Journal articles on the topic 'Mentally ill older people Services for 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.

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.

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.

Pelayanan kesehatan jiwa di Australia telah berkembang menjadi pelayanan yang berorientasi pada komunitas dan sensitive terhadap kebutuhan dan hak klien dengan gangguan jiwa. Perkembangan ini mempunyai implikasi pada system kesehatan jiwa komunitas., kebijakan tentang kesehatan jiwa, legalisasi, pelayanan kesehatan jiwa, pelayanan pembauran, begitu pula implikasi terhadap praktek keperawatan. Perubahan dalam pelayanan kesehatan jiwa menuntut perawat untuk memiliki pengetahuan yang teoritis yang lebih baik dan kemampuan untuk melakukan praktek keperawatan secara professional.Di Indonesia, kajian yang ekstensif tentang kebutuhan masyarakat dengan masalah kesehatan jiwa, sumber yang tersedia untuk memenuhi kebutuhan tersebut, serta keyakinan, nilai dan sikap tenaga professional kesehatan jiwa tentang ilmu kedokteran dan perilaku dari negara barat yang mempengaruhi pelayanan kesehatan jiwa, sangat diperlukan untuk pengembangan system kesehatan jiwa yang lebih efektif dan efesien. The mental health services in Australia have been developed to be more community based services and sensitive to the needs and rights of the mentally ill. This development has implications for mental health system and the community, mental health policy, legislation, mental health services, mainstreaming services as well as implications for nursing practice. The change in mental health services required the nurse to have the better theoretical knowledge and competence to practice professionally. In Indonesia, the extensive study on the needs of the people with mental health problem and the existing resource to meet those needs, as well as the current beliefs, values and attitudes held by mental health professionals towards the Western medical and behavioral science influence on mental health services is an important process in developing more efficient and effective mental health system.

Mental illness in old age is one of the most important healthcare issues of our times: if dementia were a country, it would be the world's 18th largest economy (Alzheimer's Disease International, 2010). In 1989, the UK Department of Health formally recognized old age psychiatry as a specialty in its own right, and by 2010 it had come of age. This anniversary was commemorated with a special edition of Old Age Psychiatrist, the newsletter of the Royal College of Psychiatrists, Faculty of Old Age Psychiatry (2011). To produce this, we called for “Janus” articles drawing on past experiences and giving thought to the future. Thirty-seven authors, ranging from students to retired colleagues, responded. Most contributors were UK-based but five worked elsewhere and provided an international perspective. The majority were psychiatrists who had devoted many years to the specialty, but their thoughts were set in context by representatives from other disciplines closely aligned to specialist healthcare services for mentally ill older people.

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.

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.

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.

On 29 September 1999, Senator Jocelyn Newman, the Australian Government's Minister for Family and Community Services, delivered a controversial address to the National Press Club in Canberra. The delivery had been delayed a week and it was widely rumoured that the Minister had been forced to remove some of the more controversial proposals (see Senate Question Time on 29 September, for instance). The speech, entitled "The Future of Welfare in the 21st Century", announced plans to tackle a supposed trend towards welfare dependency by creating an "active" rather than a "passive" welfare system set within the Government's policy of "Mutual Obligation": a system that focusses on "capacity and ability" (Newman para. 42) and "what people can do" rather than what they can't do (para. 44). This article, however, questions whether the welfare system projected for the future will be enabling for those who use it, or whether income-based social divisions will become further entrenched. Since taking government in 1996, the Coalition's policies have included privatisation of previously government-run utilities and services and restructuring of the economy and industrial relations to assure Australia's place in 'globalisation'. Restructuring the welfare system is but the next step. Speeches such as this one are typically part of the process by which governments expound their 'vision' for the future, announce policy directions and generate public feedback and, had the speech not been delayed a week, it would normally have attracted considerably less attention. However, with the approaching 'end of the millennium' and increasing evidence that economic restructuring and globalisation are not benefiting everyone, debates about the integration of social and economic policies have been a concern for politicians, press and policy-makers for some time (see for instance reporting of the "Australia Unlimited" Conference). While party polling may indicate support for reform (McGregor 28) there is also a perception that society is becoming a "meaner" place (Dickens 22-3). My method derives from the work of Teun A. van Dijk on ideological analysis. He maintains that ideologies function to co-ordinate the activities and thinking of group members so that the group's interests are protected and their goals realised (24). Our social identity is formed in part by our membership of particular groups. In talk and writing we promote the interests of our group by highlighting the positive things our group (the ingroup) has done and minimising or mitigating the negative things. Conversely, we highlight the negative aspects of those not in our group (the outgroup) and minimise their positive aspects (van Dijk 33). This type of analysis is designed to uncover group ideologies (26), not personal positions, and so when I attribute something to "the Minister" it is in her position as member of a group with social and political power whose interests are served by particular social and economic policies. I do not attribute it to Jocelyn Newman personally. At the most obvious level, the Minister constructs the Government as ingroup and the Opposition as outgroup. She does this by highlighting the achievements of her government while highlighting the failures of the Opposition. For instance, paragraph six says: ... the Howard Government has embarked upon a range of challenging and difficult policy agenda. We have reformed the tax system, so that it supports our new economic and social structures -- not those of the 1930s. We have reformed workplace relations in this country so that it supports the flexible and productive workplaces needed to provide jobs. As a result of our sound economic management, we have enjoyed strong, non-inflationary economic growth with low interest rates, and high employment growth. This is all the more remarkable when considered in the context of the Asian economic crisis. By contrast, she says: "the Opposition has failed to support responsible economic policy" and implies that their policies amount to "empty promises" which would be damaging if carried through (para. 11). There is ingroup/outgroup definition at a more subtle level also. The Minister uses "we" in paragraphs three to five to refer to a broad coalition of Government and community and presents the Government's own interests as being the interests of the broader group, thereby implying that they are really only one interest group when it comes to social and economic policy. Paragraph six reinforces this by showing that "we" (the community) have benefitted from the reforms that "we" (the Government) have embarked upon. This blurring of group boundaries between Government and community is also a way of shifting responsibility as I shall show shortly below. Before that, it is informative to look at the way welfare recipients are classified. They are not described as doing anything positive. The exception is "older women who have spent their lives caring for others" (para. 35), but who are then characterised as "uncertain" and "discouraged" (para. 35). Caring for others (generally undervalued in our individualistic society) is to be seen as a limited-time option only, with work being the ultimate goal (para. 48-53). Passivity and dependency are both devalued in our society -- praise is generally reserved for people who are active while "economic security and independence" (para. 9) are assumed to be everyone's goals. In the speech, however, people receiving welfare payments are defined in terms of: the welfare they receive (e.g. 53, 46, 39, 29, etc); their lack of income (e.g. 46, 15, etc.); their lack of paid work (e.g. 24, 25, 26,31, 33, 35, etc.); their age (e.g. 19, 23, 29, 35, 36, etc.); their family responsibilities (e.g. 24, 25, 26, 27, 35, etc); or their disabilities (e.g. 38, 39, 40, etc.). Even the words used are passive rather than active: "people on passive welfare assistance" rather than an active verb like "claiming" or even "receiving". Again, "no adult in paid work" (para. 24), "out of paid work" (para. 25), and "worklessness" (para. 26) are all attributes implying passivity. If she had used instead the expression 'non-working' it would at least imply the possibility of working, which is active. The term dependency commonly has associations with childhood and addiction which partly carry over to the term "welfare dependency" used by the Minister to describe the state of those receiving income support. These people may still be part of the community (para. 31), but they are contrasted with the community proper: the taxpayers (para. 19) and "hard working men and women of this country" who underwrite them (para. 32). The new welfare system places people receiving income support under obligation. They are expected to "help themselves" (para. 12, 13, 20), contribute to the economy and society (para. 12, 13), and "use every opportunity to become self-supporting" (para. 19). It becomes clear that the obligation on these people is to do whatever they can to get themselves into sufficient paid work so that they no longer need income support. The specified social contribution is minimal (para. 18, 48, 47, 37, 50). The duty of the responsible citizen is primarily economic -- to get a self-supporting job (para. 29-30). As we have seen, then, the ingroup consists of the Government and those members of the community who have benefited from the Government's economic reforms. The outgroup consists of those people who, due to low wages or unemployment, are dependent on income support -- i.e. those who have not benefitted from the Government's economic reforms. I now want to return to the matter of responsibility and the blurred boundaries between Government and community referred to above. The policies, reforms and initiatives are credited to the government (para. 15, 16, and 19 for example), but the responsibilities lie with "the community" and "the individual" (para. 17). "The community" is not a clearly defined entity, yet the Minister says that it "must and should provide income support" for those who cannot get a job despite their best efforts in the case of a genuine failure of the labour market (para. 31) -- a situation she has already claimed does not exist (para. 6). Throughout the sections on "People with disabilities" and "Parenting Payment", the Minister uses "we" inclusively (Government and community) when talking about what should be done for 'them' and non-inclusively (Government only) when talking about specific programs (50). The effect, as mentioned above, is to assert that the interests of one are the interests of both, but also to transfer the responsibility for doing something for 'them' to the broader community group. Together with the statement that "the community needs to think carefully and thoroughly" about "our" approach to income support and assistance (38), this blurring of boundaries prepares for the announcement of a Reference Group to "guide the development of a comprehensive Green Paper on welfare reform" (54). This "high-level" group will be "seeking submissions from interest groups and the broader community" (56), but the terms of reference and ultimate policies will be set by the government. I would suggest that "we" is used strategically in this speech to create in ordinary community members a sense of inclusion, ownership and responsibility for policies in which they ultimately will have little say. But by transferring the sense of responsibility in this way, the government removes from itself total responsibility when those policies fail. Will welfare in the coming years really be about enabling people to develop their capacities? I would suggest this is not possible while the people concerned are still conceptualised in terms of passivity and deficiency, and are regarded as not being part of 'our' group, not sharing 'our' interests. Rather, this speech projects a future where those who are self-supporting are encouraged to assume a position of superiority to those who are not, while their own interests are subsumed in the economic and social agendas of the Government. This speech also suggests a society where the only capacity that counts is the capacity to earn an income and people's responsibility to one another is limited to these terms. It seems clear that while the Government will continue to set the rules, it will continue to shirk provision of services, instead handing that responsibility to an ill-defined "community" and increasing the community's sense that those who receive welfare are somehow responsible for their own situation because they have not accepted their "responsibility" and "obligation" to help themselves. Is an economically driven, socially divided society what we want to create as we enter a new century? References "Australia Unlimited." Special Liftout. Weekend Australian 8-9 May 1999. Department of Family and Community Services. "Reference Group on Welfare Reform: Request for Public Submissions." Weekend Australian 23-4 Oct. 1999: 19. Dickens, Barry. "The Price of Kindness on Mean Streets." Weekend Australian 1-2 Jan. 2000: Review 22-23. McGregor, Richard. "Operation Dole Bludger." Weekend Australian 28-9 Aug. 1999: Focus 28. Newman, Jocelyn. "The Future of Welfare in the 21st Century." National Press Club, Canberra. 29 Sep. 1999. 10 Jan. 2000 <http://www.facs.gov.au/internet/newman.nsf/v1/sdiscusswelfare.htm>. Shanahan, Dennis. "Jobless Put Straight to Work." Australian 17 Dec. 1999: 1. Van Dijk, Teun A. "Opinions and Ideologies in the Press." Approaches to Media Discourse. Ed. Allan Bell and Peter Garrett. Oxford: Blackwell, 1998. 21-63. Citation reference for this article MLA style: Lisa Gunders. "Welfare in the Future -- What Kind of Society?." M/C: A Journal of Media and Culture 2.9 (2000). [your date of access] <http://www.uq.edu.au/mc/0001/welfare.php>. Chicago style: Lisa Gunders, "Welfare in the Future -- What Kind of Society?," M/C: A Journal of Media and Culture 2, no. 9 (2000), <http://www.uq.edu.au/mc/0001/welfare.php> ([your date of access]). APA style: Lisa Gunders. (2000) Welfare in the future -- what kind of society?. M/C: A Journal of Media and Culture 2(9). <http://www.uq.edu.au/mc/0001/welfare.php> ([your date of access]).

Critique of Ability In July 2008, we could be on the eve of an enormously important shift in disability in Australia. One sign of change is the entry into force on 3 May 2008 of the United Nations convention on the Rights of Persons with Disabilities, which will now be adopted by the Rudd Labor government. Through this, and other proposed measures, the Rudd government has indicated its desire for a seachange in the area of disability. Bill Shorten MP, the new Parliamentary Secretary for Disabilities and Children’s Services has been at pains to underline his commitment to a rights-based approach to disability. In this inaugural speech to Parliament, Senator Shorten declared: I believe the challenge for government is not to fit people with disabilities around programs but for programs to fit the lives, needs and ambitions of people with disabilities. The challenge for all of us is to abolish once and for all the second-class status that too often accompanies Australians living with disabilities. (Shorten, “Address in reply”; see also Shorten, ”Speaking up”) Yet if we listen to the voices of people with disability, we face fundamental issues of justice, democracy, equality and how we understand the deepest aspects of ourselves and our community. This is a situation that remains dire and palpably unjust, as many people with disabilities have attested. Elsewhere I have argued (Goggin and Newell) that disability constitutes a systemic form of exclusion and othering tantamount to a “social apartheid” . While there have been improvements and small gains since then, the system that reigns in Australia is still fundamentally oppressive. Nonetheless, I would suggest that through the rise of the many stranded movements of disability, the demographic, economic and social changes concerning impairment, we are seeing significant changes in how we understand impairment and ability (Barnes, Oliver and Barton; Goggin and Newell, Disability in Australia; Snyder, Brueggemann, and Garland-Thomson; Shakespeare; Stiker). There is now considerable, if still incomplete, recognition of disability as a category that is constituted through social, cultural, and political logics, as well as through complex facets of impairment, bodies (Corker and Shakespeare), experiences, discourses (Fulcher), and modes of materiality and subjectivity (Butler), identity and government (Tremain). Also there is growing awareness of the imbrication of disability and other categories such as sex and gender (Fine and Asch; Thomas), race, age, culture, class and distribution of wealth (Carrier; Cole; Davis, Bending over Backwards, and Enforcing Normalcy; Oliver; Rosenblum and Travis), ecology and war (Bourke; Gerber; Muir). There are rich and wide-ranging debates that offer fundamental challenges to the suffocating grip of the dominant biomedical model of disability (that conceives disability as individual deficit — for early critiques see: Borsay; Walker), as well as the still influential and important (if at times limiting) social model of disability (Oliver; Barnes and Mercer; Shakespeare). All in all,there have been many efforts to transform the social and political relations of disability. If disability has been subject to considerable examination, there has not yet been an extended, concomitant critique of ability. Nor have we witnessed a thoroughgoing recognition of unmarked, yet powerful operations of ability in our lives and thought, and the potential implications of challenging these. Certainly there have been important attempts to reframe the relationship between “ability” and “disability” (for example, see Jones and Mark). And we are all familiar with the mocking response to some neologisms that seek to capture this, such as the awkward yet pointed “differently-abled.” Despite such efforts we lack still a profound critique of ability, an exploration of “able”, the topic that this special issue invites us to consider. If we think of the impact and significance of “whiteness”, as a way to open up space for how to critically think about and change concepts of race; or of “masculinity” as a project for thinking about gender and sexuality — we can see that this interrogation of the unmarked category of “able” and “ability” is much needed (for one such attempt, see White). In this paper I would like to make a small contribution to such a critique of ability, by considering what the concept of innovation and its contemporary rhetorics have to offer for reframing disability. Innovation is an important discourse in contemporary life. It offers interesting possibilities for rethinking ability — and indeed disability. And it is this relatively unexplored prospect that this paper seeks to explore. Beyond Access, Equity & Diversity In this scene of disability, there is attention being given to making long over-due reforms. Yet the framing of many of these reforms, such as the strengthening of national and international legal frameworks, for instance, also carry with them considerable problems. Disability is too often still seen as something in need of remediation, or special treatment. Access, equity, and anti-discrimination frameworks offer important resources for challenging this “special” treatment, so too do the diversity approaches which have supplemented or supplanted them (Goggin and Newell, “Diversity as if Disability Mattered”). In what new ways can we approach disability and policies relevant to it? In a surprisingly wide range of areas, innovation has featured as a new, cross-sectoral approach. Innovation has been a long-standing topic in science, technology and economics. However, its emergence as master-theme comes from its ability to straddle and yoke together previously diverse fields. Current discussions of innovation bring together and extend work on the information society, the knowledge economy, and the relationships between science and technology. We are now familiar for instance with arguments about how digital networked information and communications technologies and their consumption are creating new forms of innovation (Benkler; McPherson; Passiante, Elia, and Massari). Innovation discourse has extended to many other unfamiliar realms too, notably the area of social and community development, where a new concept of social innovation is now proposed (Mulgan), often aligned with new ideas of social entrepreneurship that go beyond earlier accounts of corporate social responsibility. We can see the importance of innovation in the ‘creative industries’ discourses and initiatives which have emerged since the 1990s. Here previously distinct endeavours of arts and culture have become reframed in a way that puts their central achievement of creativity to the fore, and recognises its importance across all sorts of service and manufacturing industries, in particular. More recently, theorists of creative industries, such as Cunningham, have begun to talk about “social network markets,” as a way to understand the new hybrid of creativity, innovation, digital technology, and new economic logics now being constituted (Cunningham and Potts). Innovation is being regarded as a cardinal priority for societies and their governments. Accordingly, the Australian government has commissioned a Review of The National Innovation System, led by Dr Terry Cutler, due to report in the second half of 2008. The Cutler review is especially focussed upon gaps and weaknesses in the Australian innovation system. Disability has the potential to figure very strongly in this innovation talk, however there has been little discussion of disability in the innovation discourse to date. The significance of disability in relation to innovation was touched upon some years ago, in a report on Disablism from the UK Demos Foundation (Miller, Parker and Gillinson). In a chapter entitled “The engine of difference: disability, innovation and creativity,” the authors discuss the area of inclusive design, and make the argument for the “involvement of disabled people to create a stronger model of user design”:Disabled people represented a market of 8.6 million customers at the last count and their experiences aren’t yet feeding through into processes of innovation. But the role of disabled people as innovators can and should be more active; we should include disabled people in the design process because they are good at it. (57) There are two reasons given for this expertise of disabled people in design. Firstly, “disabled people are often outstanding problem solvers because they have to be … life for disabled people at the moment is a series of challenges to be overcome” (57). Secondly, “innovative ideas are more likely to come from those who have a new or different angle on old problems” (57). The paradox in this argument is that as life becomes more equitable for people with disabilities, then these ‘advantages’ should disappear” (58). Accordingly, Miller et al. make a qualified argument, namely that “greater participation of disabled people in innovation in the short term may just be the necessary trigger for creating an altogether different, and better, system of innovation for everyone in the future” (58). The Demos Disablism report was written at a time when rhetorics of innovation were just beginning to become more generalized and mainstream. This was also at a time in the UK, when there was hope that new critical approaches to disability would see it become embraced as a part of the diverse society that Blair’s New Labor Britain had been indicating. The argument Disablism offers about disability and innovation is in some ways a more formalized version of vernacular theory (McLaughlin, 1996). In the disability movement we often hear, with good reason, that people with disability, by dint of their experience and knowledge are well positioned to develop and offer particular kinds of expertise. However, Miller et al. also gesture towards a more generalized account of disability and innovation, one that would intersect with the emerging frameworks around innovation. It is this possibility that I wish to take up and briefly explore here. I want to consider the prospects for a fully-fledged encounter between disability and innovation. I would like to have a better sense of whether this is worth pursuing, and what it would add to our understanding of both disability and innovation? Would the disability perspective be integrated as a long-term part of our systems of innovation rather than, as Miller et al. imply, deployed temporarily to develop better innovation systems? What pitfalls might be bound up with, or indeed be the conditions of, such a union between disability and innovation? The All-Too-Able User A leading area where disability figures profoundly in innovation is in the field of technology — especially digital technology. There is now a considerable literature and body of practice on disability and digital technology (Annable, Goggin, and Stienstra; Goggin and Newell, Digital Disability; National Council on Disability), however for my purposes here I would like to focus upon the user, the abilities ascribed to various kinds of users, and the user with disability in particular. Digital technologies are replete with challenges and opportunities; they are multi-layered, multi-media, and global in their manifestation and function. In Australia, Britain, Canada, the US, and Europe, there have been some significant digital technology initiatives which have resulted in improved accessibility for many users and populations (Annable, Goggin, and Stienstra; National Council on Disability) . There are a range of examples of ways in which users with disability are intervening and making a difference in design. There is also a substantial body of literature that clarifies why we need to include the perspective of the disabled if we are to be truly innovative in our design practices (Annable, Goggin and Stienstra; Goggin and Newell, “Disability, Identity and Interdependence”). I want to propose, however, that there is merit in going beyond recognition of the role of people with disability in technology design (vital and overlooked as it remains), to consider how disability can enrich contemporary discourses on innovation. There is a very desirable cross-over to be promoted between the emphasis on the user-as-expert in the sphere of disability and technology, and on the integral role of disability groups in the design process, on the one hand, and the rise of the user in digital culture generally, on the other. Surprisingly, such connections are nowhere near as widespread and systematic as they should be. It may be that contemporary debates about the user, and about the user as co-creator, or producer, of technology (Haddon et al.; von Hippel) actually reinstate particular notions of ability, and the able user, understood with reference to notions of disability. The current emphasis on the productive user, based as it is on changing understandings of ability and disability, provides rich material for critical revision of the field and those assumptions surrounding ability. It opens up possibilities for engaging more fully with disability and incorporating disability into the new forms and relations of digital technology that celebrate the user (Goggin and Newell, Digital Disability). While a more detailed consideration of these possibilities require more time than this essay allows, let us consider for a moment the idea of a genuine encounter between the activated user springing from the disability movement, and the much feted user in contemporary digital culture and theories of innovation. People with disability are using these technologies in innovative ways, so have much to contribute to wider discussions of digital technology (Annable, Goggin and Stienstra). The Innovation Turn Innovation policy, the argument goes, is important because it stands to increase productivity, which in turn leads to greater international competitiveness and economic benefit. Especially with the emergence of capitalism (Gleeson), productivity has strong links to particular notions of which types of production and produce are valued. Productivity is also strongly conditioned by how we understand ability and, last in a long chain of strong associations, how we as a society understand and value those kinds of people and bodies believed to contain and exercise the ordained and rewarded types of ability, produce, and productivity. Disability is often seen as antithetical to productivity (a revealing text on the contradictions of disability and productivity is the 2004 Productivity Commission Review of the Disability Discrimination Act). When we think about the history of disability, we quickly realize that productivity, and by extension, innovation, are strongly ideological. Ideological, that is, in the sense that these fields of human endeavour and our understanding of them are shaped by power relations, and are built upon implicit ‘ableist’ assumptions about productivity. In this case, the power relations of disability go right to the heart of the matter, highlighting who and what are perceived to be of value, contributing economically and in other ways to society, and who and what are considered as liabilities, as less valued and uneconomical. A stark recent example of this is the Howard government workplace and welfare reforms, which further disenfranchised, controlled, and impoverished people with disability. If we need to rethink our ideas of productivity and ability in the light of new notions of disability, then so too do we need to rethink our ideas about innovation and disability. Here the new discourses of innovation may actually be useful, but also contain limited formulations and assumptions about ability and disability that need to be challenged. The existing problems of a fresh approach to disability and innovation can be clearly observed in the touchstones of national science and technology “success.” Beyond One-Sided Innovation Disability does actually feature quite prominently in the annals of innovation. Take, for instance, the celebrated case of the so-called “bionic ear” (or cochlear implant) hailed as one of Australia’s great scientific inventions of the past few decades. This is something we can find on display in the Powerhouse Museum of Technology and Design, in Sydney. Yet the politics of the cochlear implant are highly controversial, not least as it is seen by many (for instance, large parts of the Deaf community) as not involving people with disabilities, nor being informed by their desires (Campbell, also see “Social and Ethical Aspects of Cochlear Implants”). A key problem with the cochlear implant and many other technologies is that they are premised on the abolition or overcoming of disability — rather than being shaped as technology that acknowledges and is informed by disabled users in their diverse guises. The failure to learn the lessons of the cochlear implant for disability and innovation can be seen in the fact that we are being urged now to band together to support the design of a “bionic eye” by the year 2020, as a mark of distinction of achieving a great nation (2020 Summit Initial Report). Again, there is no doubting the innovation and achievement in these artefacts and their technological systems. But their development has been marked by a distinct lack of consultation and engagement with people with disabilities; or rather the involvement has been limited to a framework that positions them as passive users of technology, rather than as “producer/users”. Further, what notions of disability and ability are inscribed in these technological systems, and what do they represent and symbolize in the wider political and social field? Unfortunately, such technologies have the effect of reproducing an ableist framework, “enforcing normalcy” (Davis), rather than building in, creating and contributing to new modes of living, which embrace difference and diversity. I would argue that this represents a one-sided logic of innovation. A two-sided logic of innovation, indeed what we might call a double helix (at least) of innovation would be the sustained, genuine interaction between different users, different notions of ability, disability and impairment, and the processes of design. If such a two-sided (or indeed many-sided logic) is to emerge there is good reason to think it could more easily do so in the field of digital cultures and technologies, than say, biotechnology. The reason for this is the emphasis in digital communication technologies on decentralized, participatory, user-determined governance and design, coming from many sources. Certainly this productive, democratic, participatory conception of the user is prevalent in Internet cultures. Innovation here is being reshaped to harness the contribution and knowledge of users, and could easily be extended to embrace pioneering efforts in disability. Innovating with Disability In this paper I have tried to indicate why it is productive for discourses of innovation to consider disability; the relationship between disability and innovation is rich and complex, deserving careful elaboration and interrogation. In suggesting this, I am aware that there are also fundamental problems that innovation raises in its new policy forms. There are the issues of what is at stake when the state is redefining its traditional obligations towards citizens through innovation frameworks and discourses. And there is the troubling question of whether particular forms of activity are normatively judged to be innovative — whereas other less valued forms are not seen as innovative. By way of conclusion, however, I would note that there are now quite basic, and increasingly accepted ways, to embed innovation in design frameworks, and while they certainly have been adopted in the disability and technology area, there is much greater scope for this. However, a few things do need to change before this potential for disability to enrich innovation is adequately realized. Firstly, we need further research and theorization to clarify the contribution of disability to innovation, work that should be undertaken and directed by people with disability themselves. Secondly, there is a lack of resources for supporting disability and technology organisations, and the development of training and expertise in this area (especially to provide viable career paths for experts with disability to enter the field and sustain their work). If this is addressed, the economic benefits stand to be considerable, not to mention the implications for innovation and productivity. Thirdly, we need to think about how we can intensify existing systems of participatory design, or, better still, introduce new user-driven approaches into strategically important places in the design processes of ICTs (and indeed in the national innovation system). Finally, there is an opportunity for new approaches to governance in ICTs at a general level, informed by disability. New modes of organising, networking, and governance associated with digital technology have attracted much attention, also featuring recently in the Australia 2020 Summit. Less well recognised are new ideas about governance that come from the disability community, such as the work of Queensland Advocacy Incorporated, Rhonda Galbally’s Our Community, disability theorists such as Christopher Newell (Newell), or the Canadian DIS-IT alliance (see, for instance, Stienstra). The combination of new ideas in governance from digital culture, new ideas from the disability movement and disability studies, and new approaches to innovation could be a very powerful cocktail indeed.Dedication This paper is dedicated to my beloved friend and collaborator, Professor Christopher Newell AM (1964-2008), whose extraordinary legacy will inspire us all to continue exploring and questioning the idea of able. References Abberley, Paul. “The Concept of Oppression and the Development of a Social Theory of Disability.” Disability, Handicap & Society 2.1 (1987): 5–20. Annable, Gary, Gerard Goggin, and Deborah Stienstra, eds. “Accessibility and Inclusion in Information Technologies.” Special issue of The Information Society 23.3 (2007): 145-147. Australia 2020 Summit. Australia 2020 Summit — Initial Report. Commonwealth of Australia 20 April 2008. 15 May 2008 ‹http://www.australia2020.gov.au/docs/2020_Summit_initial_report.doc›. Barnes, Colin, and Geoff Mercer, eds. Implementing the Social Model of Disability: Theory and Research. Leeds: The Disability Press, 2004. Barnes, Colin, Mike Oliver, and Len Barton, eds. Disability Studies Today. Cambridge: Polity Press, 2002. Benkler, Yochai. The Wealth of Networks: How Social Production Transforms Markets and Freedom. New Haven, CT: Yale University Press, 2006. Borsay, Anne. “Personal Trouble or Public Issue? Toward a Model of Policy for People with Physical and Mental Disabilities.” Disability, Handicap and Society 1.2 (1986): 179-195. Bourke, Joanna. Dismembering the Male: Men’s Bodies, Britain and the Great War. Chicago: University of Chicago Press, 1996. Butler, Judith. Bodies that Matter: On the Discursive Limits of “Sex.” London: Routledge, 1993. Campbell, Fiona. “Selling the Cochlear Implant.” Disability Studies Quarterly 25.3 (2005). ‹http://www.dsq-sds-archives.org/_articles_html/2005/summer/campbell.asp›. Carrier, James G. Learning Disability: Social Class and the Construction of Inequality in American Education. New York: Greenword Press, 1986. Cole, Mike, ed. Education, Equality and Human Rights: Issues of Gender, ‘Race’, Sexuality, Disability and Social Class. London and New York: Routledge, 2006. Corker, Mairean, and Tom Shakespeare, eds. Disability/Postmodernity: Embodying Disability Theory. London: Continuum, 2002. Davis, Lennard J. Bending Over Backwards: Disability, Dismodernism, and other Difficult Positions. New York, NY: New York University Press, 2002. ———. Enforcing Normalcy: Disability, Deafness and the Body. London: Verso, 1995. Fine, Michelle, and Adrienne Asch, eds. Women with Disabilities: Essays in Psychology, Culture, and Politics. Philadelphia: Temple University Press, 1988. Fulcher, Gillian. Disabling Policies? London: Falmer Press, 1989. Gerber, David A., ed. Disabled Veterans in History. Ann Arbor, MI: University of Michigan Press, 2000. Gleeson, Brendan. Geographies of Disability. London and New York: Routledge, 1999. Goggin, Gerard, and Christopher Newell. Digital Disability: The Social Construction of Disability in New Media. Lanham, MD: Rowman & Littlefield, 2003. ———. Disability in Australia: Exposing a Social Apartheid. Sydney: University of New South Wales Press, 2005. ———, eds. “Disability, Identity, and Interdependence: ICTs and New Social Forms.” Special issue of Information, Communication & Society 9.3 (2006). ———. “Diversity as if Disability Mattered.” Australian Journal of Communication 30.3 (2003): 1-6. ———, eds. “Technology and Disability.” Special double issue of Disability Studies Quarterly 25.2-3 (2005). Haddon, Leslie, Enid Mante, Bartolomeo Sapio, Kari-Hans Kommonen, Leopoldina Fortunati, and Annevi Kant, eds. Everyday Innovators: Researching the Role of Users in Shaping ICTs. London: Springer, 2005. Jones, Melinda, and Anne Basser Marks Lee, eds. Disability, Divers-ability and Legal Change. The Hague: Martinus Nijhoff, 1999. McLaughlin, Thomas. Street Smarts and Critical Theory: Listening to the Vernacular. Madison: University of Wisconsin Press, 1996. McPherson, Tara, ed. Digital Youth, Innovation, and the Unexpected. Cambridge, MA: MIT Press, 2008. Meekosha, Helen. “Drifting Down the Gulf Stream: Navigating the Cultures of Disability Studies.” Disability & Society 19.7 (2004): 721-733. Miller, Paul, Sophia Parker, and Sarah Gillinson. Disablism: How to Tackle the Last Prejudice. London: Demos, 2004. ‹http://www.demos.co.uk/publications/disablism›. Mulgan, Geoff. “The Process of Social Innovation.” Innovations 1.2 (2006): 145-62. Muir, Kristy. “‘That Bastard’s Following Me!’ Mentally Ill Australian Veterans Struggling to Maintain Control.” Social Histories of Disability and Deformity. Ed. in David M. Turner and Kevin Stagg. New York: Routledge. 161-74. National Council on Disability (NCD). Design for Inclusion: Creating a New Marketplace. Washington: NCD, 2004. Newell, Christopher. “Debates Regarding Governance: A Disability Perspective.” Disability & Society 13.2 (1998): 295-296. Oliver, Michael. The Politics of Disablement: A Sociological Approach. New York: St. Martin’s Press, 1990. Passiante, Giuseppina, Valerio Elia, and Tommaso Massari, eds. Digital Innovation: Innovation Processes in Virtual Clusters and Digital Regions. London: Imperial College Press, 2003. Productivity Commission. Review of the Disability Discrimination Act 1992. Melbourne: Productivity Commission, 2004. ‹http://www.pc.gov.au/inquiry/dda/docs/finalreport›. Shakespeare, Tom. Disability Rights and Wrongs. New York: Routledge, 2006. Shorten, Bill. Address-in-Reply, Governor-General’s Speech. Hansard 14 Feb. 2008: 328-333. ———. “Speaking Up for True Battlers.” Daily Telegraph 12 March 2008. ‹http://www.billshorten.com.au/press/index.cfm?Fuseaction=pressreleases_full&ID=1328›. Snyder, Sharon L., Brenda Brueggemann, and Rosemary Garland-Thomson, eds. Disability Studies: Enabling the Humanities. New York: Modern Language Association of America, 2002. Stienstra, Deborah. “The Critical Space Between: Access, Inclusion and Standards in Information Technologies.” Information, Communication & Society 9.3 (2006): 335-354. Stiker, Henri-Jacques. A History of Disability. Trans. William Sayers. Ann Arbor: University of Michigan Press, 1999. Thomas, Carol. Female Forms: Experiencing and Understanding Disability. Buckingham: Open University, 1999. Rosenblum, Karen E., and Toni-Michelle C. Travis, eds. The Meaning of Difference: American Constructions of Race, Sex and Gender, Social Class, Sexual Orientation, and Disability. New York, NY: McGraw-Hill, 2008. Von Hippel, Eric. Democratizing Innovation. Cambridge, MA: MIT Press, 2005. Walker, Alan. “The Social Origins of Impairment, Disability and Handicap.” Medicine and Society 6.2-3 (1980): 18-26. White, Michele. “Where Do You Want to Sit Today: Computer Programmers’ Static Bodies and Disability.” Information, Communication and Society 9.3 (2006): 396-416.

IntroductionEmpathy: the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another, either in the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also: the capacity for this. (Merriam-Webster, “Empathy”)Compassion: sympathetic consciousness of others’ distress together with a desire to alleviate it. (Merriam-Webster, “Compassion”)After thirty years of being a vegetarian, my eyes were opened to the inherent cruelty in animal-use industries. I became vegan and spoke out on these issues at animal rights events, rallies and ethical leadership forums. My private psychology practice attracted a significant number of vegans who presented with symptoms of anxiety and depression. However, unlike many of my non-vegan clients who were unclear as to what caused their symptoms, vegans reported it as being directly related to their discovery of systematised animal misuse in society. It was as if they had extended their compassion beyond their own species.Despite these issues being increasingly discussed in open circles, this extension of compassion seems to be limited to veganism. Why is veganism increasing as a compassionate centre, with animal social justice being at its core? Drawing on key emotional experiences of vegans, based on a survey conducted in 2018 and observational data from a private psychology practice, this article explores the experiences of compassion and empathy of vegans, and the impact such experiences can have on social change.The Increase in VeganismVeganism has noticeably increased over the past decade, with greater public debate in the media. A 2016 Roy Morgan poll indicated that the number of strict vegetarian adults in Australia was 2.1 million; an increase of nearly half a million people over four years, and likely to grow (Roy Morgan). Internationally, veganism was the biggest trend of 2018, with over three times the level of interest online as “vegetarian” or “gluten-free” (The Vegan Society).I believe there are a number of reasons for this, including greater awareness through social media, increased social mobility, and people becoming aware of international practices (Oberst). Photos and videos of animal suffering are more easily accessible via mobile devices, and can be shared at a faster rate than mainstream media could traditionally share news (Forgrieve). Small budget Indie films have also shared unknown information with the public, such as Earthlings, Dominion, Cowspiracy, and Kangaroo. In addition to this, I believe there is a greater propensity for people to challenge authority and previous direction from doctors or politicians in what is known as “the era of respect” (Mowat, Corrigan, and Long).These circumstances and more have led to an increase in people making more informed, kinder choices with regard to veganism; suggesting the opening of a new era of compassion beyond one’s own species. However, living in a world where the majority of people’s consumer choices facilitates animal abuse behind closed doors, the vegan is left struggling with “the burden of knowing”; knowledge of the facts of animal mistreatment and the inability to change it or successfully induce others to acknowledge it (Mann, Vystopia).Case Study ResearchBetween 2013 and 2018 I held individual psychological counselling sessions with over 100 self-selected vegans. For these case studies, the definition of “vegan” means someone who has chosen to live their life underpinned by the philosophy of the non-use and non-exploitation of animals and informs what they eat, wear, use and are involved in. These individuals reached out to me because of the trauma they reported experiencing since learning of the ubiquitous nature of animal cruelty in society. They claimed to feel more comfortable with a vegan professional who they felt understood their anguish.From these sessions, using the qualitative research methodology of hermeneutics (Rennie), I began to notice a pattern relating to the nature and enormity of the typical vegan’s distress. Almost every vegan who came to see me presented with symptoms related to their awareness of the systemised cruelty towards animals. Their distress was compounded when they shared this information with their friends and family, whom they were sure would be equally upset by it. Instead, many people responded with indifference, criticism, and anger, saying that everyone has a right to choose what to eat. These feelings of frustration and powerlessness left them unable to reconcile competing beliefs; that the people they loved were capable of turning their eyes away from the suffering their consumer choices were financing. The typical symptoms they reported included (fig. 1):Complicated griefMental anguishDepressionAnxietySelf-medicationAnger and despairSelf-harmSuicidal thoughtsHopelessnessLonelinessPost-Traumatic Stress Disorder (PTSD)Fig. 1: Typical symptoms reported by vegans in individual counselling sessions, 2013–2018.After over 1,300 hours of one-to-one sessions with vegans around the world, plus anecdotal stories from vegans I met at numerous events, I came to believe that the vegan’s pain is unique to being vegan and warrants a specific definition.It is imperative to me that vegans do not become labelled as mentally ill or chronically dysfunctional, for which the only solution is medication. As a fellow sufferer of the “burden of knowing”, I wanted to create a term to validate our experience and avoid medicalising our plight. Only then can the vegan’s experience be examined from a humane perspective and solutions be found to help us. Then, we can become part of the rising tide of social action that says human superiority and animal abuse is unacceptable. Because I believe that this experience and associated symptoms are existential in nature, I called this “Vystopia” (Mann, Vystopia).VystopiaThe Existential crisis experienced by vegans, arising out of an awareness of the trance-like collusion with a dystopian world and the awareness of the greed, ubiquitous animal exploitation, and speciesism in a modern dystopia. (Mann, “Suffer”)Vystopia is the anguish a vegan feels, knowing about the systematised cruelty towards animals in society, and the further distress they experience with the unconscious collusion of non-vegans, and their resistance or criticism of this information. Many of my clients experienced a range of symptoms of vystopia (fig. 2): Feelings of alienation from non-vegansMisanthropyGuilt over past consumption of animalsGuilt that they are not doing enough to save animalsInability to enjoy normal aspects of lifeFrustration with non-vegans who don’t ask more questionsAnger with the “burden of knowing”Powerlessness when health professionals tell them “it’s normal”Fig. 2: Symptoms of VystopiaMisdiagnosis of the Vegan’s ConditionMany doctors have referred patients to me for mental health symptoms of eating disorders, social adjustment disorder, and self-harm. It is my opinion that vegans referred to me with these symptoms do not suffer from traditional eating or self-harm disorders.As I learned from working in a psychiatric teaching hospital in the UK, clients with these conditions are often deeply unaware of the reasons influencing their symptoms. Their symptoms become an outward sign of hidden or unconscious distress which is too painful to confront directly. The vegans sent to me are deeply distressed due to the horror they’ve witnessed or now know about in the animal industries.I discovered that regularly viewing graphic videos of animal abuse was linked with vegan clients diagnosed as having self-harm tendencies (Klonsky). They view these as they feel guilty if they don’t know about all aspects of the animal’s suffering. It’s only by knowing all the details that they can be informed and act to change it. Vegan clients who have told their doctors they “can’t eat around people who are consuming animals” are often diagnosed as having eating disorders, although they lack the typical medical symptoms of eating disorders. While it is possible for vegans, like anyone else, to suffer from these conditions, I believe that many clients have been misdiagnosed. For many, their symptoms are indicative of a normal, feeling human’s way of dealing with vystopia: The truth is that it is not a pathology, but the distress a vegan feels when they look at the state of the world and the cruelty and suffering and it’s an absolutely rational response any feeling human being should feel; a dystopian reaction to what they are seeing. (Klaper)Survey ResearchBetween February and July 2018, I conducted an anonymous online survey of 820 vegans. The survey comprised 26 multiple-choice questions covering 7 main areas:How long someone has been veganLength they have experienced vystopiaWhen vystopia was most experiencedWhere people seek help for vystopiaWhat they do to reduce symptomsFamily and relationships where significant others are not veganWhat support is most needed to help vystopiansResultsWhilst an in-depth analysis of the results is outside the scope of this article, some of the key responses are as follows (figs. 3–6):How long have you been vegan?1–5 years48%Less than 6 months16%6–12 months14%5–10 years12%10 years plus10%Fig. 3: Length of time as vegan.How long have you suffered from vystopia?1–5 years39%5–10 years21%6–12 months15%Less than 6 months13%10 years plus12%Fig. 4: Length of time suffering from vystopia.When do you most experience vystopia?Others around you eat animals79%Seeing images of animal cruelty78%Other people refuse to hear about animal cruelty78%Grocery shopping69%People laugh at you for being vegan56%Family celebrations55%Holidays40%At work events39%All the time37%When away from vegan friends30%Other8%NB: Participants invited to tick all that apply Fig. 5: When vystopia is experienced.What do you do to reduce your vystopia?Remove yourself from the world58%Increase animal advocacy55%Talk to friends34%Self-medicate (e.g. alcohol, drugs, food)24%Other16%See a doctor2%Fig. 6: Actions taken to reduce vystopia.Explaining the Differences in Adoption of VeganismWhy do some people extend their compassion towards animals whilst others are unaware of the need to do so, or believe it is anthropomorphic or sentimental? Research is needed to examine this more, but my own research and anecdotal experience suggests some factors:Social ConformityMany people are strongly influenced by what they perceive as socially normal (Mallinson and Hatemi). Cultural and family traditions, media, and community behaviour all influence the food and lifestyle choices of society. Most people are unaware that their consumer choices play a role in the mistreatment and abuse of animals.Social conditioning influences whether people choose to investigate new information further or continue with the status quo for the sake of fitting in. The need to fit in creates a social trance whereby people continue to collude with animal cruelty through their inaction, and in fact their willful ignorance means they are not likely to change their actions, as they don’t know any differently.The vegan is one who has chosen to find out the truth about animal exploitation and extend their compassion towards other species by abstaining from anything related to animal abuse.Personal and Social Defense MechanismsSimilar to social conformity, the concept of being “different” from the perceived norm is enough for many people to continue with their actions, regardless of the consequence for animals. Similarly, those who are suddenly privy to new information may feel judged by the messenger, and resistance is easier than change. The vegan is one who chooses to adjust their actions, despite the judgement or ridicule which may accompany it.Personality VariablesOn the Myers-Briggs Type Indicator (Myers and Myers), my anecdotal experience suggests that individuals with preferences for “feeling” over “thinking” are more likely to become vegan. The vegan community consists of many different personality types, with those who are strong “feeling” types more inclined to display empathy and empathetic action.Avoidance of Existential Anxiety When a person’s understanding of the world is challenged, this can create anxiety, where one is compelled to ask, “What else don’t I know?” If animal cruelty can occur at such a widespread rate—with most of society oblivious to it—what else is going on behind closed doors? For some, the reality of facing the truth can create enough angst that they will resist knowing and changing. The vegan may still experience such angst, but is compelled to change for the sake of the animals. Differing Capacity to Encompass Novel IdeasIdeas which vary from a widely believed ideology are often rejected, simply because the new idea is too radical to believe or comprehend. Consider the Law of Gravity or the concept of germs, both initially shunned by experts. Some people are more willing to delve into a new concept and explore the possibilities which come with it. Others are firmly tied to conformist ideology and will only jump on the bandwagon once others are driving it.Differing Levels of ConsciousnessIn the original book on Spiral Dynamics, Beck and Cowan talk about the magnetic forces that attract and repel individuals, the webs that connect people within organisations, and influence the rise and fall of nations and cultures. The book tracks our historic emergence from clans and tribes to networks and inter-connected networks. It identifies seven variations on how change occurs in individuals, society and leadership.Its relevance for veganism is in appreciating that there are different levels of consciousness in society. For example, a vegan passionate about the ethical treatment of animals would be faced with resistance from a hunter with a more tribal level of consciousness, according to the Spiral Dynamics model. It would be like two people from different planets communicating. Another example would be a community outraged by the influence of veganism on local employment, as demand for dairy reduces. By understanding where other people or groups are coming from, we can adapt the way in which we communicate. If vegans talk ethics and non-speciesism to people focused primarily on job security, they will face resistance.Tipping PointsIn marketing, the uptake of products and services follows a certain pattern. For example, in the 1990s, few people believed that the mobile phone market would explode to such a point. The same goes for changes in collective beliefs and ideas in society, such as the early protagonists for the Abolition of Slavery. These early innovators and adopters faced enormous resistance by those who benefited from the trade. As the movement gathered momentum, it reached what Gladwell has called the “Tipping Point”, “the moment of critical mass, the threshold, the boiling point” (12). As Gladwell stresses here, “ideas, products, messages and behaviours spread like viruses do” (7).In The Empathetic Civilization, Rifkin discusses society being wired for empathy. This occurs when the neurons in the brain mirror those of people around them, and can be likened to the psychological concept of “entrainment”. This phenomenon suggests that vegans have the ability to influence others through showing empathy and compassion.Increasingly, teenage vegans are referred to me who say, “I just had this awareness and know it is wrong to eat animals”. Many of them hadn’t seen anything on veganism or spoken to anyone about animal exploitation. I believe that this is an example of what Jung has called the “Collective Unconscious”; the structures of the unconscious mind which are shared among beings of the same species. This is encouraging for vegans who often feel helpless and cannot see how a vegan world will happen in their lifetime.ConclusionThose who are vegan for ethical reasons appear to feel compelled to take action to end animals’ plight. This may be because of the ubiquitous nature of the problem, but also because other people’s non-veganism is contributing to their vystopia.The extended compassion of vegans leaves them feeling depressed, wondering how enough people are going to change in order for veganism to become the new norm. The concept of entrainment is an encouraging one for vegans, reminding us of the importance of playing our part in being the example we want others to “entrain” to.It is my experience that empathy alone will not alleviate vystopia for these ethically-driven vegans. Vystopia can only be alleviated through action. A person may feel compelled to take action to end the suffering of refugees, children, the homeless and when they tell people, their efforts are applauded. The vegan who changes their everyday consumer choices to end animal suffering is often met with resistance, derision or criticism, as the non-vegan insists they have choice or that animals are inferior to humans. Another person may disagree with animal cruelty and yet refuse to change their consumer habits which finance the cruelty. One’s food choices are powerful political actions, and disagreeing with animal cruelty yet eating animals fuels the vegan’s vystopia. By shifting our focus from how awful the world is to taking action every day to mirror the vegan world we seek, we are creating a new norm to which others will entrain.With the increase in veganism trending upwards, the changes we are seeing across the world might mirror our compulsion to act. While the depth of animal empathy and vystopia is full of real anguish, I believe it also provides what we need to propel the world towards a vegan norm.ReferencesBeck, Don Edward, and Christopher Cowan. Spiral Dynamics: Mastering Values, Leadership and Change. New York: Wiley-Blackwell, 2005.Cowspiracy: The Sustainability Secret. Dirs. Kip Anderson and Keegan Kuhn. Appian Way, A.U.M. Films, First Spark Media, 2014.Dominion. Dir. Chris Delforce. Aussie Farms, 2018.Earthlings. Dir. Shaun Monson. Libra Max and Maggie Q, 2005.Forgrieve, Janet. “The Growing Acceptance of Veganism.” Forbes 2 Nov. 2018. 29 Mar. 2018 <https://www.forbes.com/sites/janetforgrieve/2018/11/02/picturing-a-kindler-gentler-world-vegan-month/#331421342f2b>.Gladwell, Malcolm. The Tipping Point: How Little Things Can Make a Big Difference. London: Abacus, 2000.Jung, Carl G. The Structure and Dynamics of the Psyche. 1969.Kangaroo: A Love-Hate Story. Dirs. Michael McIntyre and Kate Clere-McIntyre. Hopping Pictures, 2017.Klaper, Michael. “Interview with Dr. Michael Klaper.” YouTube 17 Aug. 2018. 29 Mar. 2019 <https://www.youtube.com/watch?time_continue=87&v=8EQOUODlq2c>.Klonsky, E. David. “The Functions of Deliberate Self-Injury: A Review of the Evidence.” Clinical Psychology Review 27.2 (2007): 226–39. Mallinson, Daniel J., and Peter K. Hatemi. “The Effects of Information and Social Conformity on Opinion Change.” Plos One 13.5 (2018). 29 Mar. 2019 <https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0196600>.Mann, Clare. “Do You Suffer from Vystopia? The Discovery of Systemised Cruelty.” Blog post. No date. 5 Apr. 2019 <https://www.veganpsychologist.com/do-you-suffer-from-vystopia/?platform=hootsuite>.———. Vystopia: The Anguish of Being Vegan in a Non-Vegan World. Sydney: Communicate31, 2018.Mowat, Andrew, John Corrigan, and Douglas Long. The Success Zone: 5 Powerful Steps to Growing Yourself and Leading Others. Mt. Evelyn: Global Publishing Group, 2009.Myers, Isabel Briggs, and Peter B. Myers. Gifts Differing: Understanding Personality Type. 2nd ed. Mountain View: Consulting Psychologists Press, 1995.Oberst, Lindsay. “Why the Global Rise in Vegan and Plant-Based Eating Isn’t a Fad (600% Increase in U.S. Vegans + Other Astounding Stats).” Food Revolution Network 18 Jan. 2018. 20 Mar. 2019 <https://foodrevolution.org/blog/vegan-statistics-global/>. Rennie, David L. “Methodical Hermeneutics and Humanistic Psychology.” The Humanistic Psychologist 35.1 (2007): 1-14.Rifkin, Jeremy. The Empathic Civilization: The Race to Global Consciousness in a World in Crisis. Cambridge: Polity, 2010.Roy Morgan. “The Slow But Steady Rise of Vegetarianism in Australia.” Roy Morgan 15 Aug. 2016. 29 Mar. 2019 <http://www.roymorgan.com/findings/vegetarianisms-slow-but-steady-rise-in-australia-201608151105>.The Vegan Society. “Statistics.” The Vegan Society, 2019. 20 Mar. 2019 <https://www.vegansociety.com/news/media/statistics>.

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.

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.

“We have made Italy, now we must make Italians,” in the (probably apocryphal) words of the Prime Minister, sometime after the unification of the nation in 1860. Perhaps in French, if it was said at all. (The quotation is typically attributed to Massimo D’Azeglio, the prime minister of Piedmont and predecessor of the first Italian prime minister Camillo Cavour. Many have suggested that the phrase was misquoted and misunderstood (see Doyle.) D’Azeglio spoke in Italian when he addressed the newly-formed Italian parliament, but my reference to French is meant to indicate the fragility of the national language in early Italy where much of the ruling class spoke French while the majority of the people in the peninsula still spoke regional dialects.) It was television – more than print media or even radio – that would have the biggest impact in terms of ‘making Italians.’ Writing about Italy in the 1950s, a well-known media critic suggested that television, a game show actually, “was able to succeed where The Divine Comedy failed … it gave Italy a national language” (qtd. in Foot). But these are yesterday’s problems. We have Italy and Italians. Moreover, the emergence of global ways of being and belonging are evidence of the ways in which the present transcends forms of belonging rooted in the old practices and older institutions of the nation-state. But, then again, maybe not. “A country that allows you to vote in its elections must be able to provide you with information about those elections” (Magliaro). This was 2002. The country is still Italy, but this time the Italians are anywhere but Italy. The speaker is referring to the extension of the vote to Italian citizens abroad, represented directly by 18 members of parliament, and the right to information guaranteed the newly enfranchised electorate. What, then, is the relationship between citizenship, the state and global television today? What are the modalities of involvement and participation involved in these transformations of the nation-state into a globally-articulated network of institutions? I want to think through these questions in relation to two ways that RAI International, the ‘global’ network of the Italian public broadcaster, has viewed Italians around the world at different moments in its history: mega-events and return information. Mega-Events Eighteen months after its creation in 1995, RAI International was re-launched. This decision was partially due to a change in government (which also meant a change in the executive and staff), but it was also a response to the perceived failure of RAI International to garner an adequate international audience (Morrione, Testimony [1997]). This re-launch involved a re-conceptualisation of the network’s mandate to include both information services for Italians abroad (the traditional ‘public service’ mandate for Italy’s international broadcasting) as well as programming that would increase the profile of Italian media in the global market. The mandate outlined for Roberto Morrione – appointed president as part of the re-launch – read: The necessity of strategic and operative certainties in the international positioning of the company, both with regard to programming for our co-nationals abroad and for other markets…are at the centre of the new role of RAI International. This involves bringing together in the best way the informative function of the public service, which is oriented to our community in the world in order to enrich its cultural patrimony and national identity, with an active presence in evolving markets. (Morrione, Testimony [1998]) The most significant change in the executive of the network was the appointment of Renzo Arbore, a well-known singer and bandleader, to the position of artistic director. At the time of Arbore’s appointment, the responsibilities of the artistic director at the network were ill defined, but he very quickly transformed the position into the ‘face’ of RAI International. In an interview from 1998, Arbore explained his role at the network as follows: “I’m the artistic director, which means I’m in charge of the programs that have any kind of artistic content. Also, I’m the so called “testimonial”, which is to say I do propaganda for the network, I’m the soul of RAI International” (Affatato). The most often discussed aspect of the programming on RAI International during Arbore’s tenure as artistic director was the energy and resources dedicated to events that put the spotlight on the global reach of the service itself and the possibilities that satellite distribution gave for simultaneous exchange between locations around the world. It was these ‘mega-events’ (Garofalo), in spite of constituting only a small portion of the programming schedule, that were often seen as defining RAI’s “new way” of creating international programming (Milana). La Giostra [The Merry Go Round], broadcast live on New Year’s Eve 1996, is often cited as the launch of the network’s new approach to its mission. Lasting 20 hours in total, the program was hosted by Arbore. As Morrione described it recently, The ‘mother of live shows’ was the Giostra of New Year’s ’97 where Arbore was live in the studio for 20 consecutive hours, with many guests and segments from the Pole, Peking, Moscow, Berlin, Jerusalem, San Paolo, Buenos Aires, New York and Los Angeles. It was a memorable enterprise without precedent and never to be duplicated. (Morrione, RAI International) The presentation of television as a global medium in La Giostra draws upon the relationship between live broadcasting, satellite television and conceptions of globality that has developed since the 1960s as part of what Lisa Parks describes as ‘global presence’ (Parks). However, in keeping with the dual mandate of RAI International, the audience that La Giostra is intended to constitute was not entirely homogenous in nature. The lines between the ‘national’ audience, which is to say Italians abroad, and the international audience involving a broader spectrum of viewers are often blurred, but still apparent. This can be seen in the locations to which La Giostra travelled, locations that might be seen as a mirror of the places to which the broadcast might be received. On the one hand, there are segments from a series of location that speak to a global audience, many of which are framed by the symbols of the cold war and the ensuing triumph of global capitalism. The South Pole, Moscow, Beijing and a reunified Berlin can be seen as representing this understanding of the globe. These cities highlighted the scope of the network, reaching cities previously cut off from Italy behind the iron curtain (or, in the case of the Pole, the extreme of geographic isolation.) The presence of Jerusalem contributed to this mapping of the planet with an ecclesiastical, but ecumenical accent to this theme. On the other hand, Sao Paolo, Buenos Aires, and Melbourne (not mentioned by Morrione, but the first international segment in the program) also mapped the world of Italian communities around the world. The map of the globe offered by La Giostra is similar to the description of the prospective audience for RAI International that Morrione gave in November 1996 upon his appointment as director. After having outlined the network’s reception in the Americas and Australia, where there are large communities of Italians who need to be served, he goes on to note the importance of Asia: “China, India, Japan, and Korea, where there aren’t large communities of Italians, but where “made in Italy,” the image of Italy, the culture and art that separate us from others, are highly respected resources” (Morrione, “Gli Italiani”). La Giostra served as a container that held together a vision of the globe that is centered around Italy (particularly Rome, caput mundi) through the presentation on screen of the various geopolitical alliances as well as the economic and migratory connections which link Italy to the world. These two mappings of the globe brought together within the frame of the 20-hour broadcast and statements about the network’s prospective audiences suggest that two different ways of watching RAI International were often overlaid over each other. On the one hand, the segments spanning the planet stood as a sign of RAI International’s ability to produce programs at a global scale. On the other hand, there was an attempt to speak directly to communities of Italians abroad. The first vision of the planet offered by the program suggests a mode of watching more common among disinterested, cosmopolitan viewers belonging to a relatively homogenous global media market. While the second vision of the planet was explicitly rooted in the international family of Italians constituted through the broadcast. La Giostra, like the ‘dual mandate’ of the network, can be seen as an attempt to bring together the national mission of network with its attempts to improve its position in global media markets. It was an attempt to unify what seemed two very different kinds of audiences: Italians abroad and non-Italians, those who spoke some Italian and those who speak no Italian at all. It was also an attempt to unify two very different ways of understanding global broadcasting: public service on the one hand and the profit-oriented goals of building a global brand. Given this orientation in the network’s programming philosophy, it is not surprising that Arbore, speaking of his activities as Artistic director, stated that his goals were to produce shows that would be accessible both to those that spoke very little Italian as well as those that were highly cultured (Arbore). In its attempt to bring these divergent practices and imagined audiences together, La Giostra can be seen as part of vision of globalisation rooted in the euphoria of the early nineties in which distance and cultural differences were reconciled through communications technology and “virtuous” transformation of ethnicity into niche markets. However, this approach to programming started to fracture and fail after a short period. The particular balance between the ethnic and the economically ecumenical mappings of the globe present in La Giostra proved to be as short lived as the ‘dual mandate’ at RAI International that underwrote its conception. Return Information The mega-events that Arbore organised came under increasing criticism from the parliamentary committees overseeing RAI’s activities as well as the RAI executive who saw them both extremely expensive to produce and of questionable value in the fulfillment of RAI’s mission as a public broadcaster (GRTV). They were sometimes described as misfatti televisivi [broadcasting misdeeds] (Arbore). The model of the televisual mega-event was increasingly targeted towards speaking to Italians abroad, dropping broader notions of the audience. This was not an overnight change, but part of a process through which the goals of the network were refocused towards ‘public service.’ Morrione, speaking before the parliamentary committee overseeing RAI’s activities, describes an evening dedicated to a celebration of the Italian flag which exemplifies this trend: The minister of Foreign Affairs asked us to prepare a Tricolore (the Italian flag) evening – that would go on air in the month of January – that we would call White, Red and Green (not the most imaginative name, but effective enough.) It would include international connections with Argentina, where there exists one of the oldest case d’italiani [Italian community centers], built shortly after the events of our Risorgimento and where they have an ancient Tricolore. We would also connect with Reggio Emilia, where the Tricolore was born and where they are celebrating the anniversary this year. Segments would also take us to the Vittoriano Museum in Rome for a series of testimonies. (Morrione, Testimony [1997]) Similar to La Giostra, the global reach of RAI International was used to create a sense of simultaneity among the dispersed communities of Italians around the world (including the population of Italy itself). The festival of the Italian flag was similarly deeply implicated in the rituals and patterns that bring together an audience and, at another level, a people. However, in the celebration of the Italian flag, the notion that such a spectacle might be of interest to those outside of a global “Italian” community has disappeared. Like La Giostra, programs of this kind are intended to be constitutive of an audience, a collectivity that would not exist were it not for the common space provided through television spectatorship. The celebration of the Italian flag is part of an attempt to produce a sense of global community organised by a shared sense of ethnic identity as expressed through the common temporality of a live broadcast. Italians around the world were part of the same Italian community not because of their shared history (even when this was the stated subject of the program as was the case with Red, White and Green), but because they co-existed by means of their experience of the mediated event. Through these events, the shared national history is produced out of the simultaneity of the common present and not, as the discourse around Italian identity presented in these programs would have it (for example, the narratives around the origin around the flag), the other way around. However, this connection between the global television event that was broadcast live and national belonging raised questions about the kind of participation they facilitated. This became a particularly salient issue with the election of the second Berlusconi government and the successful campaign to grant Italians citizens living abroad the vote, a campaign that was lead by formerly fascist (but centre-moving) Alleanza Nazionale. With the appoint of Massimo Magliaro, a longtime member of Alleanza Nazionale, to the head of the network in 2000, the concept of informazione di ritorno [return information] became increasingly prominent in descriptions of the service. The phrase was frequently used, along with tv di ritorno (Tremaglia), by the Minister for Italiani nel Mondo during the second Berlusconi administration, Mirko Tremaglia, and became a central theme in the projects envisioned for the service. (The concept had circulated previously, but it was not given the same emphasis that it would gain after Magliaro’s appointment. In an interview from 1996, Morrione is asked about his commitment to the policy of “so-called” return information. He answers the question by commenting in support of producing a ‘return image’ (immagine di ritorno), but never uses the phrase (Morrione, “Gli Italiani”). Similarly, Arbore, in an interview from 1998, is also asked about ‘so-called’ return information, but also never uses the term himself (Affatato). This suggests that its circulation was limited up until the late 1990s.) The concept of ‘return information’ – not quite a neologism in Italian, but certainly an uncommon expression – was a two-pronged, and never fully implemented, initiative. Primarily it was a policy that sought to further integrate RAI International into the system of RAI’s national television networks. This involved both improving the ability of RAI International to distribute information about Italy to communities of Italians abroad as well as developing strategies for the eventual use of programming produced by RAI International on the main national networks as a way of raising the awareness of Italians in Italy about the lives and beliefs of Italians abroad. (The programming produced by RAI International was never successfully integrated into the schedules of the other national networks. This issue remained an issue that had yet to be resolved as recently as the negotiations between the Prime Minister’s office and RAI to establish a new agreement governing RAI’s international service in 2007.) This is not to say that there was a dramatic shift in the kind of programming on the network. There had always been elements of these new goals in the programming produced exclusively for RAI International. The longest running program on the network, Sportello Italia [Information Desk Italy], provided information to Italians abroad about changes in Italian law that effected Italians abroad as well as changes in bureaucratic practice generally. It often focused on issues such as the voting rights of Italians abroad, questions about receiving pensions and similar issues. It was joined by a series of in-house productions that primarily consisted of news and information programming whose roots were in the new division in charge of radio and television broadcasts since the sixties. The primary change was the elimination of large-scale programs, aside from those relating to the Italian national soccer team and the Pope, due to budget restrictions. This was part of a larger shift in the way that the service was envisioned and its repositioning as the primary conduit between Italy and Italians abroad. Speaking in 2000, Magliaro explained this as a change in the network’s priorities from ‘entertainment’ to ‘information’: There will be a larger dose of information and less space for entertainment. Informational programming will be the privileged product in which we will invest the majority of our financial and human resources, both on radio and on television. Providing information means both telling Italians abroad about Italy and allowing public opinion in our country to find out about Italians around the world. (Morgia) Magliaro’s statement suggests that there is a direct connection between the changing way of conceiving of ‘global’ Italian television and the mandate of RAI International. The spectacles of the mid-nineties, implicitly characterised by Magliaro as ‘entertainment,’ were as much about gaining the attention of those who did not speak Italian or watch Italian television as speaking to Italians abroad. The kind of participation in the nation that these events solicited were limited in that they did not move beyond a relatively passive experience of that nation as community brought together through the diffuse and distracted experience of ‘entertainment’. The rise of informazione di ritorno was a discourse that offered a particular conception of Italians abroad who were more directly involved in the affairs of the nation. However, this was more than an increased interest in the participation of audiences. Return information as developed under Magliaro’s watch posited a different kind of viewer, a viewer whose actions were explicitly and intimately linked to their rights as citizens. It is not surprising that Magliaro prefaced his comments about the transformation of RAI’s mandate and programming priorities by acknowledging that the extension of the vote to Italians abroad demands a different kind of broadcaster. The new editorial policy of RAI International is motivated from the incontrovertible fact that Italians abroad will have the right to vote in a few months … . In terms of the product that we are developing, aimed at adequately responding to the new demands created by the vote… (Morgia) The granting of the vote to Italians abroad meant that the forms of symbolic communion that produced through the mega-events needed to be supplanted by a policy that allowed for a more direct link between the ritual aspects of global media to the institutions of the Italian state. The evolution of RAI International cannot be separated from the articulation of an increasingly ethno-centric conception of citizenship and the transformation of the Italian state over the course of the 1990s and early 2000s towards. The transition between these two approaches to global television in Italy is important for understanding the events that unfolded around RAI International’s role in the development of a global Italian citizenry. A development that should not be separated from the development of increasingly stern immigration policies whose effect is to identify and export undesirable outsiders. The electoral defeat of Berlusconi in 2006 and the ongoing political instability surrounding the centre-left government in power since then has meant that the future development of RAI International and the long-term effects of the right-wing government on the cultural and political fabric of Italy remain unclear at present. The current need for a reformed electoral system and talk about the need for greater efficiency from the new executive at RAI make the evolution of the global Italian citizenry an important context for understanding the role of media in the globalised nation-state in the years to come. References Affatato, M. “I ‘Segreti’ di RAI International.” GRTV.it, 17 Feb. 1998. Arbore, R. “‘Il mio sogno? Un Programma con gli italiani all’estero.’” GRTV.it, 18 June 1999. Foot, J. Milan since the Miracle: City, Culture, and Identity. Oxford: Berg, 2001. Garofalo, R. “Understanding Mega-Events: If We Are the World, Then How Do We Change It? In C. Penley and A. Ross, eds., Technoculture. Minneapolis, University of Minnesota Press, 1991. 247-270. Magliaro, M. “Speech to Second Annual Conference.” Comites Canada, 2002. Milana, A. RAI International: 40 anni, una storia. Rome: RAI, 2003. Morgia, G. La Rai del Duemila per gli italiani nel mondo: Intervista con Massimo Magliaro. 2001. Morrione, R. “Gli Italiani all’estero ‘azionisti di riferimento.’” Interview with Roberto Morrione. GRTV.it, 15 Nov. 1996. Morrione, R. Testimony of Roberto Morrione to Commitato Bicamerale per la Vigilanza RAI, 12 December 1997. Rome, 1997. 824-841. Morrione, R. Testimony of Roberto Morrione to Commitato Bicamerale per la Vigilanza RAI, 17 November 1998. Rome, 1998. 1307-1316. Morrione, R. “Tre anni memorabili.” RAI International: 40 anni, una storia. Rome: RAI, 2003. 129-137. Parks, L. Cultures in Orbit: Satellites and the Televisual. Durham, NC: Duke UP, 2005.

“We have made Italy, now we must make Italians,” in the (probably apocryphal) words of the Prime Minister, sometime after the unification of the nation in 1860. Perhaps in French, if it was said at all. (The quotation is typically attributed to Massimo D’Azeglio, the prime minister of Piedmont and predecessor of the first Italian prime minister Camillo Cavour. Many have suggested that the phrase was misquoted and misunderstood (see Doyle.) D’Azeglio spoke in Italian when he addressed the newly-formed Italian parliament, but my reference to French is meant to indicate the fragility of the national language in early Italy where much of the ruling class spoke French while the majority of the people in the peninsula still spoke regional dialects.) It was television – more than print media or even radio – that would have the biggest impact in terms of ‘making Italians.’ Writing about Italy in the 1950s, a well-known media critic suggested that television, a game show actually, “was able to succeed where The Divine Comedy failed … it gave Italy a national language” (qtd. in Foot). But these are yesterday’s problems. We have Italy and Italians. Moreover, the emergence of global ways of being and belonging are evidence of the ways in which the present transcends forms of belonging rooted in the old practices and older institutions of the nation-state. But, then again, maybe not. “A country that allows you to vote in its elections must be able to provide you with information about those elections” (Magliaro). This was 2002. The country is still Italy, but this time the Italians are anywhere but Italy. The speaker is referring to the extension of the vote to Italian citizens abroad, represented directly by 18 members of parliament, and the right to information guaranteed the newly enfranchised electorate. What, then, is the relationship between citizenship, the state and global television today? What are the modalities of involvement and participation involved in these transformations of the nation-state into a globally-articulated network of institutions? I want to think through these questions in relation to two ways that RAI International, the ‘global’ network of the Italian public broadcaster, has viewed Italians around the world at different moments in its history: mega-events and return information. Mega-Events Eighteen months after its creation in 1995, RAI International was re-launched. This decision was partially due to a change in government (which also meant a change in the executive and staff), but it was also a response to the perceived failure of RAI International to garner an adequate international audience (Morrione, Testimony [1997]). This re-launch involved a re-conceptualisation of the network’s mandate to include both information services for Italians abroad (the traditional ‘public service’ mandate for Italy’s international broadcasting) as well as programming that would increase the profile of Italian media in the global market. The mandate outlined for Roberto Morrione – appointed president as part of the re-launch – read: The necessity of strategic and operative certainties in the international positioning of the company, both with regard to programming for our co-nationals abroad and for other markets…are at the centre of the new role of RAI International. This involves bringing together in the best way the informative function of the public service, which is oriented to our community in the world in order to enrich its cultural patrimony and national identity, with an active presence in evolving markets. (Morrione, Testimony [1998]) The most significant change in the executive of the network was the appointment of Renzo Arbore, a well-known singer and bandleader, to the position of artistic director. At the time of Arbore’s appointment, the responsibilities of the artistic director at the network were ill defined, but he very quickly transformed the position into the ‘face’ of RAI International. In an interview from 1998, Arbore explained his role at the network as follows: “I’m the artistic director, which means I’m in charge of the programs that have any kind of artistic content. Also, I’m the so called “testimonial”, which is to say I do propaganda for the network, I’m the soul of RAI International” (Affatato). The most often discussed aspect of the programming on RAI International during Arbore’s tenure as artistic director was the energy and resources dedicated to events that put the spotlight on the global reach of the service itself and the possibilities that satellite distribution gave for simultaneous exchange between locations around the world. It was these ‘mega-events’ (Garofalo), in spite of constituting only a small portion of the programming schedule, that were often seen as defining RAI’s “new way” of creating international programming (Milana). La Giostra [The Merry Go Round], broadcast live on New Year’s Eve 1996, is often cited as the launch of the network’s new approach to its mission. Lasting 20 hours in total, the program was hosted by Arbore. As Morrione described it recently, The ‘mother of live shows’ was the Giostra of New Year’s ’97 where Arbore was live in the studio for 20 consecutive hours, with many guests and segments from the Pole, Peking, Moscow, Berlin, Jerusalem, San Paolo, Buenos Aires, New York and Los Angeles. It was a memorable enterprise without precedent and never to be duplicated. (Morrione, RAI International) The presentation of television as a global medium in La Giostra draws upon the relationship between live broadcasting, satellite television and conceptions of globality that has developed since the 1960s as part of what Lisa Parks describes as ‘global presence’ (Parks). However, in keeping with the dual mandate of RAI International, the audience that La Giostra is intended to constitute was not entirely homogenous in nature. The lines between the ‘national’ audience, which is to say Italians abroad, and the international audience involving a broader spectrum of viewers are often blurred, but still apparent. This can be seen in the locations to which La Giostra travelled, locations that might be seen as a mirror of the places to which the broadcast might be received. On the one hand, there are segments from a series of location that speak to a global audience, many of which are framed by the symbols of the cold war and the ensuing triumph of global capitalism. The South Pole, Moscow, Beijing and a reunified Berlin can be seen as representing this understanding of the globe. These cities highlighted the scope of the network, reaching cities previously cut off from Italy behind the iron curtain (or, in the case of the Pole, the extreme of geographic isolation.) The presence of Jerusalem contributed to this mapping of the planet with an ecclesiastical, but ecumenical accent to this theme. On the other hand, Sao Paolo, Buenos Aires, and Melbourne (not mentioned by Morrione, but the first international segment in the program) also mapped the world of Italian communities around the world. The map of the globe offered by La Giostra is similar to the description of the prospective audience for RAI International that Morrione gave in November 1996 upon his appointment as director. After having outlined the network’s reception in the Americas and Australia, where there are large communities of Italians who need to be served, he goes on to note the importance of Asia: “China, India, Japan, and Korea, where there aren’t large communities of Italians, but where “made in Italy,” the image of Italy, the culture and art that separate us from others, are highly respected resources” (Morrione, “Gli Italiani”). La Giostra served as a container that held together a vision of the globe that is centered around Italy (particularly Rome, caput mundi) through the presentation on screen of the various geopolitical alliances as well as the economic and migratory connections which link Italy to the world. These two mappings of the globe brought together within the frame of the 20-hour broadcast and statements about the network’s prospective audiences suggest that two different ways of watching RAI International were often overlaid over each other. On the one hand, the segments spanning the planet stood as a sign of RAI International’s ability to produce programs at a global scale. On the other hand, there was an attempt to speak directly to communities of Italians abroad. The first vision of the planet offered by the program suggests a mode of watching more common among disinterested, cosmopolitan viewers belonging to a relatively homogenous global media market. While the second vision of the planet was explicitly rooted in the international family of Italians constituted through the broadcast. La Giostra, like the ‘dual mandate’ of the network, can be seen as an attempt to bring together the national mission of network with its attempts to improve its position in global media markets. It was an attempt to unify what seemed two very different kinds of audiences: Italians abroad and non-Italians, those who spoke some Italian and those who speak no Italian at all. It was also an attempt to unify two very different ways of understanding global broadcasting: public service on the one hand and the profit-oriented goals of building a global brand. Given this orientation in the network’s programming philosophy, it is not surprising that Arbore, speaking of his activities as Artistic director, stated that his goals were to produce shows that would be accessible both to those that spoke very little Italian as well as those that were highly cultured (Arbore). In its attempt to bring these divergent practices and imagined audiences together, La Giostra can be seen as part of vision of globalisation rooted in the euphoria of the early nineties in which distance and cultural differences were reconciled through communications technology and “virtuous” transformation of ethnicity into niche markets. However, this approach to programming started to fracture and fail after a short period. The particular balance between the ethnic and the economically ecumenical mappings of the globe present in La Giostra proved to be as short lived as the ‘dual mandate’ at RAI International that underwrote its conception. Return Information The mega-events that Arbore organised came under increasing criticism from the parliamentary committees overseeing RAI’s activities as well as the RAI executive who saw them both extremely expensive to produce and of questionable value in the fulfillment of RAI’s mission as a public broadcaster (GRTV). They were sometimes described as misfatti televisivi [broadcasting misdeeds] (Arbore). The model of the televisual mega-event was increasingly targeted towards speaking to Italians abroad, dropping broader notions of the audience. This was not an overnight change, but part of a process through which the goals of the network were refocused towards ‘public service.’ Morrione, speaking before the parliamentary committee overseeing RAI’s activities, describes an evening dedicated to a celebration of the Italian flag which exemplifies this trend: The minister of Foreign Affairs asked us to prepare a Tricolore (the Italian flag) evening – that would go on air in the month of January – that we would call White, Red and Green (not the most imaginative name, but effective enough.) It would include international connections with Argentina, where there exists one of the oldest case d’italiani [Italian community centers], built shortly after the events of our Risorgimento and where they have an ancient Tricolore. We would also connect with Reggio Emilia, where the Tricolore was born and where they are celebrating the anniversary this year. Segments would also take us to the Vittoriano Museum in Rome for a series of testimonies. (Morrione, Testimony [1997]) Similar to La Giostra, the global reach of RAI International was used to create a sense of simultaneity among the dispersed communities of Italians around the world (including the population of Italy itself). The festival of the Italian flag was similarly deeply implicated in the rituals and patterns that bring together an audience and, at another level, a people. However, in the celebration of the Italian flag, the notion that such a spectacle might be of interest to those outside of a global “Italian” community has disappeared. Like La Giostra, programs of this kind are intended to be constitutive of an audience, a collectivity that would not exist were it not for the common space provided through television spectatorship. The celebration of the Italian flag is part of an attempt to produce a sense of global community organised by a shared sense of ethnic identity as expressed through the common temporality of a live broadcast. Italians around the world were part of the same Italian community not because of their shared history (even when this was the stated subject of the program as was the case with Red, White and Green), but because they co-existed by means of their experience of the mediated event. Through these events, the shared national history is produced out of the simultaneity of the common present and not, as the discourse around Italian identity presented in these programs would have it (for example, the narratives around the origin around the flag), the other way around. However, this connection between the global television event that was broadcast live and national belonging raised questions about the kind of participation they facilitated. This became a particularly salient issue with the election of the second Berlusconi government and the successful campaign to grant Italians citizens living abroad the vote, a campaign that was lead by formerly fascist (but centre-moving) Alleanza Nazionale. With the appoint of Massimo Magliaro, a longtime member of Alleanza Nazionale, to the head of the network in 2000, the concept of informazione di ritorno [return information] became increasingly prominent in descriptions of the service. The phrase was frequently used, along with tv di ritorno (Tremaglia), by the Minister for Italiani nel Mondo during the second Berlusconi administration, Mirko Tremaglia, and became a central theme in the projects envisioned for the service. (The concept had circulated previously, but it was not given the same emphasis that it would gain after Magliaro’s appointment. In an interview from 1996, Morrione is asked about his commitment to the policy of “so-called” return information. He answers the question by commenting in support of producing a ‘return image’ (immagine di ritorno), but never uses the phrase (Morrione, “Gli Italiani”). Similarly, Arbore, in an interview from 1998, is also asked about ‘so-called’ return information, but also never uses the term himself (Affatato). This suggests that its circulation was limited up until the late 1990s.) The concept of ‘return information’ – not quite a neologism in Italian, but certainly an uncommon expression – was a two-pronged, and never fully implemented, initiative. Primarily it was a policy that sought to further integrate RAI International into the system of RAI’s national television networks. This involved both improving the ability of RAI International to distribute information about Italy to communities of Italians abroad as well as developing strategies for the eventual use of programming produced by RAI International on the main national networks as a way of raising the awareness of Italians in Italy about the lives and beliefs of Italians abroad. (The programming produced by RAI International was never successfully integrated into the schedules of the other national networks. This issue remained an issue that had yet to be resolved as recently as the negotiations between the Prime Minister’s office and RAI to establish a new agreement governing RAI’s international service in 2007.) This is not to say that there was a dramatic shift in the kind of programming on the network. There had always been elements of these new goals in the programming produced exclusively for RAI International. The longest running program on the network, Sportello Italia [Information Desk Italy], provided information to Italians abroad about changes in Italian law that effected Italians abroad as well as changes in bureaucratic practice generally. It often focused on issues such as the voting rights of Italians abroad, questions about receiving pensions and similar issues. It was joined by a series of in-house productions that primarily consisted of news and information programming whose roots were in the new division in charge of radio and television broadcasts since the sixties. The primary change was the elimination of large-scale programs, aside from those relating to the Italian national soccer team and the Pope, due to budget restrictions. This was part of a larger shift in the way that the service was envisioned and its repositioning as the primary conduit between Italy and Italians abroad. Speaking in 2000, Magliaro explained this as a change in the network’s priorities from ‘entertainment’ to ‘information’: There will be a larger dose of information and less space for entertainment. Informational programming will be the privileged product in which we will invest the majority of our financial and human resources, both on radio and on television. Providing information means both telling Italians abroad about Italy and allowing public opinion in our country to find out about Italians around the world. (Morgia) Magliaro’s statement suggests that there is a direct connection between the changing way of conceiving of ‘global’ Italian television and the mandate of RAI International. The spectacles of the mid-nineties, implicitly characterised by Magliaro as ‘entertainment,’ were as much about gaining the attention of those who did not speak Italian or watch Italian television as speaking to Italians abroad. The kind of participation in the nation that these events solicited were limited in that they did not move beyond a relatively passive experience of that nation as community brought together through the diffuse and distracted experience of ‘entertainment’. The rise of informazione di ritorno was a discourse that offered a particular conception of Italians abroad who were more directly involved in the affairs of the nation. However, this was more than an increased interest in the participation of audiences. Return information as developed under Magliaro’s watch posited a different kind of viewer, a viewer whose actions were explicitly and intimately linked to their rights as citizens. It is not surprising that Magliaro prefaced his comments about the transformation of RAI’s mandate and programming priorities by acknowledging that the extension of the vote to Italians abroad demands a different kind of broadcaster. The new editorial policy of RAI International is motivated from the incontrovertible fact that Italians abroad will have the right to vote in a few months … . In terms of the product that we are developing, aimed at adequately responding to the new demands created by the vote… (Morgia) The granting of the vote to Italians abroad meant that the forms of symbolic communion that produced through the mega-events needed to be supplanted by a policy that allowed for a more direct link between the ritual aspects of global media to the institutions of the Italian state. The evolution of RAI International cannot be separated from the articulation of an increasingly ethno-centric conception of citizenship and the transformation of the Italian state over the course of the 1990s and early 2000s towards. The transition between these two approaches to global television in Italy is important for understanding the events that unfolded around RAI International’s role in the development of a global Italian citizenry. A development that should not be separated from the development of increasingly stern immigration policies whose effect is to identify and export undesirable outsiders. The electoral defeat of Berlusconi in 2006 and the ongoing political instability surrounding the centre-left government in power since then has meant that the future development of RAI International and the long-term effects of the right-wing government on the cultural and political fabric of Italy remain unclear at present. The current need for a reformed electoral system and talk about the need for greater efficiency from the new executive at RAI make the evolution of the global Italian citizenry an important context for understanding the role of media in the globalised nation-state in the years to come. References Affatato, M. “I ‘Segreti’ di RAI International.” GRTV.it, 17 Feb. 1998. Arbore, R. “‘Il mio sogno? Un Programma con gli italiani all’estero.’” GRTV.it, 18 June 1999. Foot, J. Milan since the Miracle: City, Culture, and Identity. Oxford: Berg, 2001. Garofalo, R. “Understanding Mega-Events: If We Are the World, Then How Do We Change It? In C. Penley and A. Ross, eds., Technoculture. Minneapolis, University of Minnesota Press, 1991. 247-270. Magliaro, M. “Speech to Second Annual Conference.” Comites Canada, 2002. Milana, A. RAI International: 40 anni, una storia. Rome: RAI, 2003. Morgia, G. La Rai del Duemila per gli italiani nel mondo: Intervista con Massimo Magliaro. 2001. Morrione, R. “Gli Italiani all’estero ‘azionisti di riferimento.’” Interview with Roberto Morrione. GRTV.it, 15 Nov. 1996. Morrione, R. Testimony of Roberto Morrione to Commitato Bicamerale per la Vigilanza RAI, 12 December 1997. Rome, 1997. 824-841. Morrione, R. Testimony of Roberto Morrione to Commitato Bicamerale per la Vigilanza RAI, 17 November 1998. Rome, 1998. 1307-1316. Morrione, R. “Tre anni memorabili.” RAI International: 40 anni, una storia. Rome: RAI, 2003. 129-137. Parks, L. Cultures in Orbit: Satellites and the Televisual. Durham, NC: Duke UP, 2005. Citation reference for this article MLA Style Hayward, Mark. "Two Ways of Being Italian on Global Television." M/C Journal 10.6/11.1 (2008). echo date('d M. Y'); ?> <http://journal.media-culture.org.au/0804/05-hayward.php>. APA Style Hayward, M. (Apr. 2008) "Two Ways of Being Italian on Global Television," M/C Journal, 10(6)/11(1). Retrieved echo date('d M. Y'); ?> from <http://journal.media-culture.org.au/0804/05-hayward.php>.