Articoli di riviste sul tema "Great Britain. Mental Health Act 2007"

AbstractPurposeTo examine whether self-reported exposure to bullying during childhood is associated with suicide attempts over the life course, and if so, what mechanisms could account for this relationship.Subjects and methodsA random probability sample comprising 7461 respondents was interviewed for the 2007 survey of psychiatric morbidity of adults in Great Britain. Survey respondents were asked about suicidal attempts and whether they were bullied in childhood.ResultsRecall of being bullied in childhood decreased with age from 25% of 16–24-year-olds to 4% among those 75 or over with few differences in the proportions between men and women. Bullying co-occurred with several victimisation experiences including sexual abuse and severe beatings and with running away from home. Even after controlling for lifetime factors known to increase the risk of suicidal behaviour, adults who reported bullying in childhood were still more than twice as likely as other adults to attempt suicide later in life.DiscussionBeing the victim of bullying involves the experience of suffering a defeat and humiliation that in turn could lead to entrapment, hopelessness, depression and suicidal behaviour.ConclusionsBullying is already known to be associated with substantial distress and other negative consequences and this further evidence of a strong correlation with the risk of suicide in later life should increase further the motivation of society, services and citizens to act decisively to reduce bullying in childhood.

<p>On 19th July 2007, the Mental Health Act 2007 received the Royal Assent. The 2007 Act amends the Mental Health Act 1983, the Mental Capacity Act 2005 and the Domestic Violence, Crime and Victims Act 2004.</p><p>For those engaged in the mental health field, be it as lawyers, doctors, nurses, social workers or in some other professional role, or as service users, carers or family members, there is a great deal to take on board before most of these provisions are implemented on the intended date of October 2008. Much of the contents of this issue of the JMHL will hopefully assist readers who need to get to grips with the changes ahead.</p>

<p>We shall be reflecting on the experience of the three recent upheavals in mental health and mental capacity law – the <em>Mental Capacity Act 2005</em>, most of which came into force on 1 October 2007, accompanied by a Code of Practice; the <em>Mental Health Act 2007</em> amendments to the <em>Mental Health Act 1983</em>, most of which came into force on 3 November 2008, accompanied by its two Codes of Practice; and the <em>Mental Health Act 2007</em> amendments to the <em>Mental Capacity Act 2005</em>, bringing in the so-called deprivation of liberty safeguards or DOLS, on 1 April this year, together with another Code of Practice. That is a huge amount of new law for us all to get to grips with. Things have changed a great deal since I first started teaching Mental Health Law to social workers and psychiatrists in this very City in 1971 – nearly 40 years ago.</p>

AbstractParity in coverage for mental health services has been a longstanding policy aim at the state and federal levels and is a regulatory feature of the Affordable Care Act. Despite the importance and legislative effort involved in these policies, evaluations of their effects on patients yield mixed results. I leverage the Employee Retirement Income Security Act and unique claims-level data that includes information on employers’ self-insurance status to shed new light in this area after the implementation of two state parity laws in 2007 and federal parity a few years later. My empirics reveal evidence of strategic avoidance on behalf of insurers in both states prior to the passage of state parity, as well as positive increases in mental health care utilization after parity laws are implemented – but context matters. Policy heterogeneity across states and strategic behaviors by employers and commercial insurers substantively shape the benefits that ultimately flow to patients. Insights from this research have broad relevance to ongoing health policy debates, particularly as states retain great discretion over many health coverage decisions and as federal policy continues to evolve.

Aims and MethodA cross-sectional survey of patient drug prescriptions on two elderly psychiatric wards was carried out to estimate the potential of drug–drug interactions. Two standardised databases, British National Formulary (BNF; British Medical Association & Royal Pharmaceutical Society of Great Britain, 2007) and Upto Date (www.uptodate.com/), were employed.ResultsA majority (96%) of drug prescriptions in our study could potentially cause drug–drug interactions. Most patients were on multiple drugs (on average eight drugs per patient). There was poor concordance between the two databases: BNF picked up fewer cases of potential drug–drug interactions than Upto Date (43 v. 152 instances) and they also estimated the potential for hazardousness differently.Clinical ImplicationsPolypharmacy is common in elderly psychiatric patients and this increases the possibility of a drug–drug interaction. Estimating the risk of interactions depends on a sound knowledge in therapeutics and/or referring to a standardised source of information. the results of this study question the concordance of two well-referenced databases.

BackgroundThe identification of the factors that influence the persistence of psychiatric disorder may assist practitioners to focus on young people who are particularly prone to poor outcomes, but population-based samples of sufficient size are rare.MethodThis secondary analysis combined data from two large, population-based cross-sectional surveys in Great Britain (1999 and 2004) and their respective follow-ups (2002 and 2007), to study homotypic persistence among the 998 school-age children with psychiatric disorder at baseline. Psychiatric disorder was measured using the Development and Well-Being Assessment applying DSM-IV criteria. Factors relating to the child, family, and the severity and type of psychopathology at baseline were analysed using logistic regression.ResultsApproximately 50% of children with at least one psychiatric disorder were assigned the same diagnostic grouping at 3-year follow-up. Persistent attention-deficit/hyperactivity disorder and anxiety were predicted by poor peer relationship scores. Persistent conduct disorder was predicted by intellectual disability, rented housing, large family size, poor family function and by severer baseline psychopathology scores.ConclusionsHomotypic persistence was predicted by different factors for different groups of psychiatric disorders. Experimental research in clinical samples should explore whether these factors also influence response to interventions.

The aim of the study was to examine published professional communications by psychologists in France and Great Britain on a topical issue — integration — during the year of 1983, as a reflection and comparison of present status, practice and current ideologies. British psychologists, secure in their central legal involvement in the assessment procedures of the new 1981 Education Act, did not raise integration of handicapped children in the ordinary school as an issue. A theme running through their literature was the issue of integrating assessment/intervention-type procedures of applied behavioural models with the legal requirements of assessment/classification of children with special needs. Much concern was expressed by French psychologists, in relation to the two integration Circulars of January 1982 and January 1983. They saw the Circulars affecting directly the conceptual framework within which they worked, the development of individual skills and their more precarious career prospects. Criticism was made of the lack of definition of handicap, reducing the child to a single scholastic dimension, and thus confusing psychology with pedagogy.

BackgroundEconomic recessions are characterized by job insecurity and rising unemployment. The relationship between job insecurity and poor mental health is known. However, we do not know how this relationship is affected by individual socio-economic circumstances.MethodA random probability sample comprising 3581 respondents (1746 men and 1835 women) were selected from the third national survey of psychiatric morbidity in Great Britain. Fieldwork was carried out throughout 2007. Depression was assessed using the revised Clinical Interview Schedule and ICD-10 research diagnostic criteria administered by well-trained lay interviewers.ResultsOne-fifth of all working men and women aged 16–64 years felt that their job security was poor. From a multivariate analysis of several job stressors, there was an increased likelihood of depression among those agreeing that their job security was poor [odds ratio (OR) 1.58, 95% confidence intervals (CI) 1.22–2.06, p<0.001]. After controlling for age and sex, job insecurity (OR 1.86, 95% CI 1.47–2.35, p<0.001) and being in debt (OR 2.17, 95% CI 1.58–2.98, p<0.001) were independently associated with depression.ConclusionsJob insecurity has a strong association with feelings of depression even after controlling for biographic characteristics (age and sex), economic factors (personal debt) and work characteristics (type of work and level of responsibility). Despite the organizational changes needed to cope with a recession, employers should also take note of the additional distress experienced by workers at a time of great uncertainty, particularly those in less skilled jobs and in financial straits.

Background Police officers are often the first responders to mental health-related incidents and, consequently, can become a common gateway to care. The volume of such calls is an increasing challenge. Objective What is the evidence base for models of police-related mental health triage (often referred to as ‘street triage’) interventions? Design Rapid evidence synthesis. Participants Individuals perceived to be experiencing mental ill health or in a mental health crisis. Interventions Police officers responding to calls involving individuals experiencing perceived mental ill health or a mental health crisis, in the absence of suspected criminality or a criminal charge. Main outcome measures Inclusion was not restricted by outcome. Data sources Eleven bibliographic databases (i.e. Applied Social Sciences Index and Abstracts, Criminal Justice Abstracts, EMBASE, MEDLINE, PAIS® Index, PsycINFO, Scopus, Social Care Online, Social Policy & Practice, Social Sciences Citation Index and Social Services Abstracts) and multiple online sources were searched for relevant systematic reviews and qualitative studies from inception to November 2017. Additional primary studies reporting quantitative data published from January 2016 were also sought. Review methods The three-part rapid evidence synthesis incorporated metasynthesis of the effects of street triage-type intervention models, rapid synthesis of UK-relevant qualitative evidence on implementation and the overall synthesis. Results Five systematic reviews, eight primary studies reporting quantitative data and eight primary studies reporting qualitative data were included. Most interventions involved police officers working in partnership with mental health professionals. These interventions were generally valued by staff and showed some positive effects on procedures (such as rates of detention) and resources, although these results were not entirely consistent and not all important outcomes were measured. Most of the evidence was at risk of multiple biases caused by design flaws and/or a lack of reporting of methods, which might affect the results. Limitations All primary research was conducted in England, so may not be generalisable to the whole of the UK. Discussion of health equity issues was largely absent from the evidence. Conclusions Most published evidence that aims to describe and evaluate various models of street triage interventions is limited in scope and methodologically weak. Several systematic reviews and recent studies have called for a prospective, comprehensive and streamlined collection of a wider variety of data to evaluate the impact of these interventions. This rapid evidence synthesis expands on these recommendations to outline detailed implications for research, which includes clearer articulation of the intervention’s objectives, measurement of quantitative outcomes beyond section 136 of the Mental Health Act 1983 [Great Britain. Mental Health Act 1983. Section 136. London: The Stationery Office; 1983 URL: www.legislation.gov.uk/ukpga/1983/20/section/136 (accessed October 2017)] (i.e. rates, places of safety and processing data) and outcomes that are most important to the police, mental health and social care services and service users. Evaluations should take into consideration shorter-, medium- and longer-term effects. Whenever possible, study designs should have an appropriate concurrent comparator, for example by comparing the pragmatic implementation of collaborative street triage models with models that emphasise specialist training of police officers. The collection of qualitative data should capture dissenting views as well as the views of advocates. Any future cost-effectiveness analysis of these interventions should evaluate the impact across police, health and social services. Funding The National Institute for Health Research Health Services and Delivery Research programme.

BackgroundForensic psychiatric services provide care for those with mental disorders and offending behaviour. Concerns have been expressed that patients may stay for too long in too high levels of security. The economic burden of these services is high, and they are highly restrictive for patients. There is no agreed standard for ‘long stay’; we defined a length of stay exceeding 5 years in medium secure care, 10 years in high secure care or 15 years in a combination of both settings as long stay.ObjectivesTo (1) estimate the number of long-stay patients in secure settings; (2) describe patients’ characteristics, needs and care pathways and the reasons for their prolonged stay; (3) identify patients’ perceptions of their treatment and quality of life; and (4) explore stakeholders’ views on long stay.DesignA mixed-methods approach, including a cross-sectional survey (on 1 April 2013) of all patients in participating units to identify long-stay patients [work package (WP) 1], file reviews and consultant questionnaires for long-stay patients (WP2), interviews with patients (WP3) and focus groups with other stakeholders (WP4).SettingAll three high secure hospitals and 23 medium secure units (16 NHS and 9 independent providers) in England.ParticipantsInformation was gathered on all patients in participating units (WP1), from which 401 long-stay patients were identified (WP2), 40 patients (WP3), 17 international and 31 UK experts were interviewed and three focus groups were held (WP4).ResultsApproximately 23.5% of high secure patients and 18% of medium secure patients were long-stay patients. We estimated that there are currently about 730 forensic long-stay patients in England. The source of a patient’s admission and the current section of the Mental Health Act [Great Britain.Mental Health Act 1983 (as Amended by the Mental Health Act 2007). London: The Stationery Office; 2007] under which they were admitted predicted long-stay status. Long-stay patients had complex pathways, moving ‘around’ between settings rather than moving forward. They were most likely to be detained under a hospital order with restrictions (section 37/41) and to have disturbed backgrounds with previous psychiatric admissions, self-harm and significant offending histories. The most common diagnosis was schizophrenia, but 47% had been diagnosed with personality disorder. Only 50% had current formal psychological therapies. The rates of violent incidents within institutions and seclusion were high, and a large proportion had unsuccessful referrals to less secure settings. Most patients had some contact with their families. We identified five classes of patients within the long-stay sample with different characteristics. Patients differed in their attribution of reasons for long stay (internal/external), outlook (positive/negative), approach (active/passive) and readiness for change. Other countries have successfully developed specific long-stay services; however, UK experts were reluctant to accept the reality of long stay and that the medical model of ‘cure’ does not work with this group.LimitationsWe did not conduct file reviews on non-long-stay patients; therefore, we cannot say which factors differentiate between long-stay patients and non-long-stay patients.ConclusionsThe number of long-stay patients in England is high, resulting in high resource use. Significant barriers were identified in developing designated long-stay services. Without a national strategy, these issues are likely to remain.Future workTo compare long-stay patients and non-long-stay patients. To evaluate new service models specifically designed for long-stay patients.Study registrationThe National Institute for Health Research (NIHR) Clinical Research Network Portfolio 129376.FundingThe NIHR Health Services and Delivery Research programme.

The relationship between vitamin D deficiency and the metabolic syndrome has recently been revealed. Vitamin D deficiency was hypothesized to cause increased insulin resistance and decreased insulin secretion, which can result in the development of diabetes mellitus and obesity. Cardiovascular diseases are also closely related to the metabolic syndrome. Vitamin D has been shown to have complex multistep metabolism and act as a hormone at many extraskeletal targets. In this literature review, a comprehensive analysis of publications from Scopus, Web of Science, MedLine, The Cochrane Library, EMBASE, Global Health databases, as well as scientific libraries of Ukraine, European Union, Great Britain, USA and other countries was performed. Our goal is to identify and analyze scientific publications discussing various biological effects of vitamin D and its use in the comprehensive treatment of various diseases. In addition to the previously known role of vitamin D in calcium metabolism and the musculoskeletal system functionality, a wide range of its pleiotropic effects has been discovered recently. Modern studies have shown a relationship between low levels of vitamin D and development of neurocognitive dysfunction, mental and neurological disorders, infertility, immune reactivity and autoimmune disorders, various types of cancer, and cardiovascular pathologies. More recent data also revealed a relationship of vitamin D deficiency with practically all aspects of metabolic syndrome, namely diabetes mellitus type 2 and type 1, hyperglycemia, dyslipidemia, obesity, hypertension, and insulin resistance. It was concluded that the data of the modern literature regarding the effectiveness of vitamin D in the treatment and prevention of metabolic disorders and structural and functional changes of the liver in diabetes and non-alcoholic fatty liver disease are quite contradictory: at the same level as the numerous publications on the effective use of vitamin D, there are studies with unconfirmed effectiveness of therapy and even its toxicity for the indicated pathologies.

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

Ukraine faced numerous challenges accompanied by an increased level of psychotraumatic events in society. Historical events, including war, the annexation of Crimea, and other socio-political transformations, have contributed to an increase in the number of individuals who may exhibit symptoms of post-traumatic stress disorder (PTSD) and adjustment disorders. The growing need for qualified psychotherapy services and PTSD treatment programs in the country is urgent. However, the existing services are not yet sufficiently developed to satisfy this need at an adequate level. Increasing awareness and education in mental health issues in society actualizes the need for further scientific research and development of effective and economically justified methods of treatment. ACT (Acceptance and Commitment Therapy) is a progressive approach that helps people with PTSD change their attitudes about their memories and feelings through acceptance rather than avoidance. This method is actively studied and used in countries with developed medical science, for example, in the USA, Canada and Great Britain. In the context of Ukraine, where the topic may be less researched, the need to develop an adapted ACT model, conduct clinical trials, educate professionals, and develop supportive resources for patients and their families is urgent. Such measures will contribute to more effective treatment of PTSD and adjustment disorders in Ukrainian society.

Historically, the development of new technologies has led to higher increase in productivity in Europe and the US compared to the rest of the world. This resulted in economic asymmetry in the global economy, which ultimately led to the geopolitical domination of Europe and the USA over Africa and Asia (Findlay, O'Rourke, 2007, p. 364). With the adoption of the Lisbon Treaty, the European Union has taken a step towards playing a significant role in trade, environment and social issues (Van Langenhove & Marchesi, 2009; Rudloff & Laurer, 2017). The aim of this work is to present the main challenges and changes taking place in transatlantic relations between the EU and the USA in the second and third decades of the 21st century. To achieve this goal, the descriptive method was applied. The reforms carried out by the EU allowed it to act in the spectrum of international affairs. The conflict between Russia and Ukraine (in 2014 and 2022) showed that the EU is increasingly resorting to sanctions and conditionality instruments to promote its interests. In addition, the EU aims to create a common army. Despite the fact that these changes contribute to the increase of the EU's competitiveness in the world, US relations between the EU are extremely durable, and the transatlantic community is repairing mutual relations relatively quickly. Meanwhile, the EU's relations with China, the largest trading partner in 2021 (Eurostat, 2022), are confrontational. Despite improvement in transatlantic relations, the earlier lack of communication led to a lack of confidence in the US on the part of Europeans. Relations between the US and the EU in the third decade of the 21st century remain tense – it is worth mentioning the AUKUS defense pact (agreement between Australia, Great Britain and the United States) on the exchange of defense technologies in this respect (Borges de Castro and Ricardo, 2021; Morcos 2021 ). It resulted in deterioration of relations between Paris and the US to such an extent that they were close to breaking. At the same time, at the beginning of the third decade of the 21st century, transatlantic relations sought stabilization. President Biden's administration has reaffirmed its commitment to alliances with European countries. In addition, the US returned to the Paris Agreement (United States Department of State, 2021) and rejoined the World Health Organization (WHO) (Keaten, 2021).

Abstract Introduction Inflatable penile prostheses (IPP) are used in a multitude of urologic disorders including Peyronie’s disease and medication-refractory erectile dysfunction. The IPP procedure is performed by inserting a penile pump to help generate and maintain penile erections. Objective To analyze self-perceptions and body dysmorphia of patients who have had an IPP placement. Methods An electronic survey was delivered through REDCap to patients who had undergone an IPP placement and who were identified using diagnosis codes associated with the procedure within the 06/01/2007 - 09/01/2022 observation interval. The survey asked each patient about their comfort with their penis’s appearance and usage in sexual settings, with answer choices corresponding to a five-point Likert-Scale in addition to a free-form response section. T-tests were utilized to compare mean respondent scores before and after IPP placement using SPSS software. Results 436 surveys were sent out, and 69 responses were received (15.83%). When asked about comfort with their penis’s appearance, the respondents had a slight, non-significant increase after IPP (T-value = -0.771, p = .221). In response to inquiring about the patient’s ease using their penis in sexual relationships, patients reported an increase due to their IPP placement (T-value = -3.00, p = .0016). When reverse coded, patients demonstrated a great decrease in concern about their penis in social situations after the IPP procedure (T-value = -3.88, p = .00008). The total score of all questions before and after IPP placement increased by an average of 15.1% (T-value = -3.21, p = .00082). 44.78% of respondents noted a positive change in how the IPP changed how they view themselves and their body; 40.30% noted neutral change and 14.93% noted a negative change. In response to how the IPP has affected sexual and romantic relations, 68.66% reported a positive difference after IPP, 16.42% were neutral, and 14.93% reported a negative difference. Conclusions Our data demonstrate that IPPs have a stronger impact on sexual function, as opposed to body image; however, the vast majority of patients felt a positive or neutral change of how they view themselves and their bodies post-IPP. These findings support the continued use of IPPs in patients who are non-responsive to previous erectile dysfunction treatments. Disclosure Any of the authors act as a consultant, employee or shareholder of an industry for: Larry Lipshultz: AbbVie (Consultant) American Medical Systems/Boston Scientific (Speaker) Augmenta LLC (Stockholder) Aytu BioScience (Consultant) Contraline, Inc. (Consultant) Endo Pharmaceuticals (Consultant/Speaker) Inherent Biosciences (Advisor) Lipocine (Consultant); Mohit Khera: Consultant- AbbVie, Halozyme, Clarus, Metuchen, Acerus, Boston Scientific, Coloplast, Endo.

In January of this year, artist Christian Marclay’s 24-hour video installation The Clock came to Melbourne. As Ben Lerner explains in 10:04, the autofictional novel Lerner published in 2014, The Clock by Christian Marclay “is a clock: it is a twenty-four hour montage of thousands of scenes from movies and a few from TV edited together so as to be shown in real time; each scene indicates the time with a shot of a timepiece or its mention in dialogue, time in and outside of the film is synchronized” (52). I went to see The Clock at ACMI several times, with friends and alone, in the early morning and late at night. Each time I sank back into the comfortable chairs and settled into the communal experience of watching time pass on a screen in a dark room. I found myself sucked into the enforced narrative of time, the way in which the viewer – in this case myself, and those sharing the experience with me – sought to impose a sort of meaning on the arguably meaningless passing of the hours. In this essay, I will explore how we can expand our thinking of the idea of autofiction, as a genre, to include contemporary forms of digital media such as social media or activity trackers, as the authors of these new forms of digital media act as author-characters by playing with the divide between fact and fiction, and requiring their readers to ascertain meaning by interpreting the clues layered within. I will analyse the ways in which the meaning of autofictional texts—such as Lerner’s 10:04, but also including social media feeds, blogs and activity trackers—shifts depending on their audience. I consider that as technology develops, we increasingly use data to contextualise ourselves within a broader narrative – health data, media, journalistic data. As the sociologist John B. Thompson writes, “The development of the media not only enriches and transforms the process of self-formation, it also produces a new kind of intimacy which did not exist before … individuals can create and establish a form of intimacy which is essentially non-reciprocal” (208). New media and technologies have emerged to assist in this process of self-formation through the collection and publication of data. This essay is interested in analysing this process of self-formation, and its relationship to the genre of autofiction.Contemporary Digital Media as AutofictionWhile humans have always recorded themselves throughout history, with the rise of new technologies the instinct to record the self is increasingly becoming an automatic one; an instinct we can tie to what media theorist Nick Couldry terms as “presencing”: an “emerging requirement in everyday life to have a public presence beyond one’s bodily presence, to construct an objectification of oneself” (50). We are required to participate in ‘presencing’ by opting-in to new media; it is now uncommon – even unfavourable – for someone not to engage in any forms of social media or self-monitoring. We are now encouraged to participate in ‘presencing’ through the recording and online publication of data that would have once been considered private, such as employment histories and activity histories. Every Instagram photo, Snapchat or TikTok video contributes to an accumulating digital presence, an emerging narrative of the self. Couldry notes that presencing “is not the same as calling up a few friends to tell them some news; nor, although the audience is unspecific, is it like putting up something on a noticeboard. That is because presencing is oriented to a permanent site in public space that is distinctively marked by the producer for displaying that producer’s self” (50).In this way, we can see that in effect we are all becoming increasingly positioned to become autofiction authors. As an experimental form of literature, autofiction has been around for a long time, the term having first been introduced in the 1970s, and with Serge Doubrovsky widely credited with having introduced the genre with the publication of his 1977 novel Fils (Browning 49). In the most basic terms, autofiction is simply a work of fiction featuring a protagonist who can be interpreted as a stand-in for its author. And while autofiction is also confused with or used interchangeably with other genres such as metafiction or memoir, the difference between autofiction and other genres, writes Arnaud Schmitt, is that autoficton “relies on fiction—runs on fiction, to be exact” (141). Usually the reader can pick up on the fact that a novel is an autofictional one by noting that the protagonist and the author share a name, or key autobiographical details, but it is debatable as to whether the reader in fact needs to know that the work is autofictional in the first place in order to properly engage with it as a literary text.The same ideas can be applied to the application of digital media today. Kylie Cardell notes that “personal autobiographical but specifically diaristic (confessional, serial, quotidian) disclosure is increasingly positioned as a symptomatic feature of online life” (507). This ties in with Couldry’s idea of ‘presencing’; confession is increasingly a requirement when it comes to participation in digital media. As technology advances, the ways in which we can present and record the self evolve, and the narrative we can produce of the self expands alongside our understanding of the relationship between fact and fiction. Though of course we have always fabricated different narratives of the self, whether it be through diary entries or letter-writing, ‘presencing’ occurs when we literally present these edited versions of ourselves to an online audience. Lines become blurred between fiction and non-fiction, and the ability to distinguish between ‘fake’ and ‘real’ becomes almost impossible.Increasingly, such a distinction fails to seem important, and in some cases, this blurred line becomes the point, or a punchline; we can see this most clearly in TikTok videos, wherein people (specifically, or at least most typically, young people—Generation Z) play with ideas of truth and unreality ironically. When a teenager posts a video of themselves on TikTok dancing in their school cafeteria with the caption, “I got suspended for this, don’t let this flop”, the savvy viewer understands without it needing to be said that the student was not actually suspended – and also understands that even less outlandish or unbelievable digital content is unreliable by nature, and simply the narrative the author or producer wishes to convey; just like the savvy reader of an autofiction novel understands, without it actually being said, that the novel is in part autobiographical, even when the author and protagonist do not share a name or other easily identifiable markers.This is the nature of autofiction; it signals to the reader its status as a work of autofiction by littering intertextual clues throughout. Readers familiar with the author’s biography or body of work will pick up on these clues, creating a sense of uneasiness in the reader as they work to discern what is fact and what is not.Indeed, in 10:04, Lerner flags the text as a work of autofiction by sketching a fictional-not-fictional image of himself as an author of a story, ‘The Golden Vanity’ published in The New Yorker, that earned him a book deal—a story the ‘real’ Ben Lerner did in fact publish, two years before the publication of 10:04: “a few months before, the agent had e-mailed me that she believed I could get a “strong six-figure” advance based on a story of mine that had appeared in The New Yorker” (Lerner 4).In a review of 10:04 for the Sydney Review of Books, Stephanie Bishop writes:we learn that he did indeed write a proposal, that there was a competitive auction … What had just happened? Where are we in time? Was the celebratory meal fictional or real? Can we (and should we) seek to distinguish these categories?Here Lerner is ‘presencing’, crafting a multilayered version of himself across media by assuming that the reader of his work is also a reader of The New Yorker (an easy assumption to make given that his work often appears in, and is reviewed in, The New Yorker). Of course, this leads to the question: what becomes of autofiction when it is consumed by someone who is unable to pick up on the many metareferences layered within its narrative? In this case, the work itself becomes a joke that doesn’t land – much like a social media feed being consumed by someone who is not its intended audience.The savvy media consumer also understands that even the most meaningless or obtuse of media is all part of the overarching narrative. Lerner highlights the way we try and impose meaning onto (arguably) meaningless media when he describes his experience of watching time pass in Marclay’s The Clock:Big Ben, which I would come to learn appears frequently in the video, exploded, and people in the audience applauded… But then, a minute later, a young girl awakes from a nightmare and, as she’s comforted by her father (Clark Gable as Rhett Butler), you see Big Ben ticking away again outside their window, no sign of damage. The entire preceding twenty-four hours might have been the child’s dream, a storm that never happened, just one of many ways The Clock can be integrated into an overarching narrative. Indeed it was a greater challenge for me to resist the will to integration. (Lerner 52-53)This desire to impose an overarching narrative that Lerner speaks of – and which I also experienced when watching The Clock, as detailed in the introduction to this essay – is what the recording of the self both aims to achieve and achieves by default; it is the point and also the by-product. The Self as DataThe week my grandmother died, in 2017, my father bought me an Apple Watch. I had recently started running and—perhaps as an outlet for my grief—was looking to take my running further. I wanted a smart watch to help me record my runs; to turn the act of running into data that I could quantify and thus understand. This, in turn, would help me understand something about myself. Deborah Lupton explains my impulse here when she writes, “the body/self is portrayed as a conglomerate of quantifiable data that can be revealed using digital devices” (65). I wanted to reveal my ‘self’ by recording it, similar to the way the data accumulated in a diary, when reflected upon, helps a diarist understand their life more broadly. "Is a Fitbit a diary?”, asks Kylie Cardell. “The diary in the twenty-first century is already vastly different from many of its formal historical counterparts, yet there are discursive resonances. The Fitbit is a diary if we think of diary as a chronological record of data, which it can be” (348). The diary, as with the Apple Watch or Fitbit, is simply just a record of the self moving through time.Thus I submitted myself to the task of turning as much of myself into digital data as was possible to do so. Every walk, swim, meditation, burst of productivity, lapse in productivity, and beat of my heart became quantified, as Cardell might say, diarised. There is a very simple sort of pleasure in watching the red, green and blue rings spin round as you stand more, move more, run more. There is something soothing in knowing that at any given moment in time, you can press a button and see exactly what your heart is doing; even more soothing is knowing that at any given time, you can open up an app and see what your heart has been doing today, yesterday, this month, this year. It made sense to me that this data was being collected via my timepiece; it was simply the accumulation of my ‘self,’ as viewed through the lens of time.The Apple Watch was just the latest in a series of ways I have tasked technology with the act of quantifying myself; with my iPhone I track my periods with the Clue app. I measure my mental health with apps such as Shine, and my daily habits with Habitica. I have tried journaling apps such as Reflectly and Day One. While I have never actively tracked my food intake, or weight, or sex life, I know if I wanted to I could do this, too. And long before the Apple Watch, and long before my iPhone, too, I measured myself. In the late 2000s, I kept an online blog. Rebecca Blood notes that the development of blogging technology allowed blogging to become about “whatever came to mind. Walking to work. Last night’s party. Lunch” (54). Browning expands on this, noting that bloggingemerged as a mode of publication in the late ’90s, expressly smudging the boundaries of public and private. A diaristic mode, the blog nonetheless addresses (a) potential reader(s), often with great intimacy — and in its transition to print, as a boundary-shifting form with ill-defined goals regarding its readership. (49)(It is worth noting here that while of course many different forms of blogging exist and have always existed, this essay is only concerned with the diaristic blog that Blood and Browning speak of – arguably the most popular, and at least the most well known, form of blog.)My blog was also ostensibly about my own life, but really it was a work of autofiction, in the same way that my Apple Watch data, when shared, became a work of autofiction – which is to say that I became the central character, the author-character, whose narrative I was shaping with each post, using time as the setting. Jenny Davis writes:if self-quantifiers are seeking self-knowledge through numbers, then narratives and subjective interpretations are the mechanisms by which data morphs into selves. Self-quantifiers don’t just use data to learn about themselves, but rather, use data to construct the stories that they tell themselves about themselves.Over time, I became addicted to the blogging platform’s inbuilt metrics. I would watch with interest as certain posts performed better than others, and eventually the inevitable happened: I began – mostly unconsciously – to try and mould the content of my blogs to achieve certain outcomes – similar to the way that now, in 2019, it is hard to say whether I use an app to assist myself to meditate/journal/learn/etc, or whether I meditate/journal/learn/etc in order to record myself having done so.David Sedaris notes how the collection of data subconsciously, automatically leads to its manipulation in his essay collection, Calypso:for reasons I cannot determine my Fitbit died. I was devastated when I tapped the broadest part of it and the little dots failed to appear. Then I felt a great sense of freedom. It seemed that my life was now my own again. But was it? Walking twenty-five miles, or even running up the stairs and back, suddenly seemed pointless, since, without the steps being counted and registered, what use were they? (Sedaris, 49)In this way, the data we collect on and produce about ourselves, be it fitness metrics, blog posts, Instagram stories or works of literature or art, allows us to control and shape our own narrative, and so we do, creating what Kylie Cardell describes as “an autobiographical representation of self that is coherent and linear, “excavated” from a mass of personal data” (502).Of course, as foregrounded earlier, it is important to highlight the way ideas of privacy and audience shift in accordance with the type of media being consumed or created. Within different media, different author-characters emerge, and the author is required to participate in ‘presencing’ in different ways. For instance, data that exists only for the user does not require the user, or author, to participate in the act of ‘presencing’ at all – an example of this might be the Clue app, which records menstruation history. This information is only of interest to myself, and is not published or shared anywhere, with anyone. However even data intended for a limited audience still requires participation in ‘presencing’. While I only ‘share’ my Apple Watch’s activity with a few people, even just the act of sharing this activity influences the activity itself, creating an affect in which the fact of the content’s consumption shapes the creation of the content itself. Through consumption of Apple Watch data alone, a narrative can be built in which I am lazy, or dedicated, an early riser or a late sleeper, the kind of person who prefers setting their own goals, or the kind of person who enjoys group activities – and knowing that this narrative is being built requires me to act, consciously, in the experience of building it, which leads to the creation of something unreal or fictional interspersed with factual data. (All of which is to admit that sometimes I go on a run not because I want to go on a run, but because I want to be the sort of person who has gone on a run, and be seen as such: in this way I am ‘presencing’.)Similarly, the ephemeral versus permanent nature of data shared through media like Snapchat or Instagram dictates its status as a work of autofiction. When a piece of data – for instance, a photograph on Instagram – is published permanently, it contributes to an evolving autofictional narrative. The ‘Instagrammed’ self is both real and unreal, both fictional and non-fictional. The consumer of this data can explore an author’s social media feed dating back years and consume this data in exactly the way the author intends. However, the ‘stories’ function on Instagram, for instance, allows the consumption of this data to change again. Content is published for a limited amount of time—usually 24 hours—then disappears, and is able to be shared with either the author’s entire group of followers, or a select audience, allowing an author more creative freedom to choose how their data is consumed.Anxiety and AutofictionWhy do I feel the need to record all this data about myself? Obviously, this information is, to an extent, useful. If you are a person who menstruates, knowing exactly when your last period was, how long it lasted and how heavy it was is useful information to have, medically and logistically. If you run regularly, tracking your runs can be helpful in improving your time or routine. Similarly, recording the self in this way can be useful in keeping track of your moods, your habits, and your relationships.Of course, as previously noted, humans have always recorded ourselves. Cardell notes that “although the forms, conditions, and technology for diary keeping have changed, a motivation for recording, documenting, and accounting for the experience of the self over time has endured” (349). Still, it is hard to ignore the fact that ultimately, we seem to be entering some sort of age of digital information hoarding, and harder still to ignore the sneaking suspicion that this all seems to speak to a growing anxiety – and specifically, an anxiety of the self.Gayle Greene writes that “all writers are concerned with memory, since all writing is a remembrance of things past; all writers draw on the past, mine it as a quarry. Memory is especially important to anyone who cares about change, for forgetting dooms us to repetition” (291). If all writers are concerned with memory, as Greene posits, then perhaps we can draw the conclusion that autofiction writers are concerned with an anxiety of forgetting, or of being forgotten. We are self-conscious as authors of autofictional media; concerned with how our work is and will continue to be perceived – and whether it is perceived at all. Marjorie Worthington believes that that the rise in self-conscious fiction has resulted in an anxiety of obsolescence; that this anxiety in autofiction occurs “when a cultural trope (such as 'the author' is deemed to be in danger of becoming obsolete (or 'dying')” (27). However, it is worth considering the opposite – that an anxiety of obsolescence has resulted in a rise of self-conscious fiction, or autofiction.This fear of obsolescence is pervasive in new digital media – Instagram stories and Snapchats, which once disappeared forever into a digital void, are now able to be saved and stored. The fifteen minutes of fame has morphed into fifteen seconds: in this way, time works both for and against the anxious author of digital autofiction. Technologies evolve quicker than we can keep up, with popular platforms becoming obsolete at a rapid pace. This results in what Kylie Cardell sees as an “anxiety around the traces of lives accumulating online and the consequences of 'accidental autobiography,' as well as the desire to have a 'tidy,' representable, and 'storied' life” (503).This same desire can be seen at the root of autofiction. The media theorist José van Dijck notes thatwith the advent of photography, and later film and television, writing tacitly transformed into an interior means of consciousness and remembrance, whereupon electronic forms of media received the artificiality label…writing gained status as a more authentic container of past recollection. (15)Autofiction, however, disrupts this tacit transformation. It is a co-mingling of a desire to record the self, as well as a desire to control one’s own narrative. The drive to represent oneself in a specific way, with consideration to one’s audience and self-brand, has become the root of social media, but is so pervasive now that it is often an unexamined, subconscious one. In autofiction, this drive is not subconscious, it is self-conscious.ConclusionAs technology has developed, new ways to record, present and evaluate the self have emerged. While an impulse to self-monitor has always existed within society, with the rise of ‘presencing’ through social media this impulse has been made public. In this way, we can see presencing, or the public practice of self-performing through media, as an inherently autofictional practice. We can understand that the act of presencing stems from a place of anxiety and self-consciousness, and understand that is in fact impossible to create autofiction without self-consciousness. As we begin to understand that all digital media is becoming inherently autofictional in nature, we’re increasingly required to force to draw our own conclusions about the media we consume—just like the author-character of 10:04 is forced to draw his own conclusions about the passing of time, as represented by Big Ben, when interacting with Marclay’s The Clock. By analysing and comparing the ways in which the emerging digital landscape and autofiction both share a common goal of recording and preserving an interpretation of the ‘self’, we can then understand a deeper understanding of the purpose that autofiction serves. ReferencesBishop, Stephanie. “The Same but Different: 10:04 by Ben Lerner.” Sydney Review of Books 6 Feb. 2015. <https://sydneyreviewofbooks.com/10-04-ben-lerner/>.Blood, Rebecca. "How Blogging Software Reshapes the Online Community." Communications of the ACM 47.12 (2004): 53-55.Browning, Barbara. "The Performative Novel." TDR: The Drama Review 62.2 (2018): 43-58. Davis, Jenny. “The Qualified Self.” Cyborgology 13 Mar. 2013. <http://thesocietypages.org/cyborgology/2013/03/13/the-qualified-self/>.Cardell, Kylie. “The Future of Autobiography Studies: The Diary.” a/b: Auto/Biography Studies 32.2 (2017): 347-350.Cardell, Kylie. “Modern Memory-Making: Marie Kondo, Online Journaling, and the Excavation, Curation, and Control of Personal Digital Data.” a/b: Auto/Biography Studies 32.3 (2017): 499-517.Couldry, Nick. Media, Society, World: Social Theory and Digital Media Practice. Great Britain: Polity Press, 2012.Greene, Gayle. “Feminist Fiction and the Uses of Memory.” Signs 16.2 (1991): 290-321.Lerner, Ben. 10:04. London: Faber and Faber, 2014.Lerner, Ben. “The Golden Vanity.” The New Yorker 11 June 2012. <https://www.newyorker.com/magazine/2012/06/18/the-golden-vanity>.Lupton, Deborah. “You Are Your Data: Self-Tracking Practices and Concepts of Data.” Lifelogging. Ed. Stefan Selke. Wiesbaden: Springer, 2016. 61-79.Schmitt, Arnaud. “David Shields's Lyrical Essay: The Dream of a Genre-Free Memoir, or beyond the Paradox.” a/b: Auto/Biography Studies 31.1 (2016): 133-146.Sedaris, David. Calypso. United States: Little Brown, 2018.Thompson, John B. The Media and Modernity: A Social Theory of the Media. California: Stanford University Press, 1995.Van Dijck, José. Mediated Memories in the Digital Age. Stanford: Stanford UP, 2007.Worthington, Marjorie. The Story of "Me": Contemporary American Autofiction. Nebraska: University of Nebraska Press, 2018.

In this article I discuss a story told by the South Australian Ngarrindjeri Aboriginal elder, Aunty Hilda Wilson (nee Varcoe), about the time when, at not quite sixteen, she was sent from the Point Pearce Aboriginal Station to work in the Adelaide Hills, some 500 kilometres away, as a housekeeper for “one of Adelaide’s leading doctors”. Her secondment was part of a widespread practice in early and mid-twentieth century Australia of placing young Aboriginal women “of marriageable age” from missions and government reserves into domestic service. Consciously deploying Indigenous storytelling practices as pedagogy, Hilda Wilson recounted this episode in a number of distinct ways during the late 1990s and early 2000s. Across these iterations, each building on the other, she exhibited a personal resilience in her subjectivity, embedded in Indigenous knowledge systems of relationality, kin and work, which informed her agency and determination in a challenging situation in which she was both caring for a white socially-privileged family of five, while simultaneously grappling with the injustices of a state system of segregated indentured labour. Kirmayer and colleagues propose that “notions of resilience emerging from developmental psychology and psychiatry in recent years address the distinctive cultures, geographic and social settings, and histories of adversity of indigenous peoples”. Resilience is understood here as an ability to actively engage with traumatic change, involving the capacity to absorb stress and to transform in order to cope with it (Luthar et al.). Further to this, in an Indigenous context, Marion Kickett has found the capacity for resilience to be supported by three key factors: family connections, culture and belonging as well as notions of identity and history. In exploring the layers of this autobiographical story, I employ this extended psychological notion of resilience in both a domestic ambit as well as the broader social context for Indigenous people surviving a system of external domination. Additionally I consider the resilience Aunty Hilda demonstrates at a pivotal interlude between girlhood and womanhood within the trajectory of her overall long and productive life, and within an intergenerational history of resistance and accommodation. What is especially important about her storytelling is its refusal to be contained by the imaginary of the settler nation and its generic Aboriginal-female subject. She refuses victimhood while at the same time illuminating the mechanisms of injustice, hinting also at possibilities for alternative and more equitable relationships of family and work across cultural divides. Considered through this prism, resilience is, I suggest, also a quality firmly connected to ideas of Aboriginal cultural-sovereignty and standpoint and to, what Victoria Grieves has identified as, the Aboriginal knowledge value of sharing (25, 28, 45). Storytelling as Pedagogy The story I discuss was verbally recounted in a manner that Westphalen describes as “a continuation of Dreaming Stories”, functioning to educate and connect people and country (13-14). As MacGill et al. note, “the critical and transformative aspects of decolonising pedagogies emerge from storytelling and involve the gift of narrative and the enactment of reciprocity that occurs between the listener and the storyteller.” Hilda told me that as a child she was taught not to ask questions when listening to the stories of an Elder, and her own children were raised in this manner. Hilda's oldest daughter described this as a process involving patience, intrigue and surprise (Elva Wanganeen). Narratives unfold through nuance and repetition in a complexity of layers that can generate multiple levels of meaning over time. Circularity and recursivity underlie this pedagogy through which mnemonic devices are built so that stories become re-membered and inscribed on the body of the listener. When a perceived level of knowledge-transference has occurred, a narrator may elect to elaborate further, adding another detail that will often transform the story’s social, cultural, moral or political context. Such carefully chosen additional detail, however, might re-contextualise all that has gone before. As well as being embodied, stories are also emplaced, and thus most appropriately told in the Country where events occurred. (Here I use the Aboriginal English term “Country” which encompasses home, clan estate, and the powerful complex of spiritual, animate and inanimate forces that bind people and place.) Hilda Wilson’s following account of her first job as a housekeeper for “one of Adelaide’s leading doctors”, Dr Frank Swann, provides an illustration of how she expertly uses traditional narrative forms of incrementally structured knowledge transmission within a cross-cultural setting to tell a story that expresses practices of resilience as resistance and transformation at its core. A “White Doctor” Story: The First Layer Aunty Hilda first told me this story when we were winding along the South Eastern Freeway through the Adelaide hills between Murray Bridge and Mount Barker, in 1997, on our way home to Adelaide from a trip to Camp Coorong, the Ngarrindjeri cultural education centre co-founded by her granddaughter. She was then 86 years old. Ahead of us, the profile of Mt Lofty rose out of the plains and into view. The highest peak in the Mount Lofty ranges, Yurrebilla, as it is known to Kaurna Aboriginal people, or Mt Lofty, has been an affluent enclave of white settlement for Adelaide’s moneyed elite since early colonial times. Being in place, or in view of place, provided the appropriate opportunity for her to tell me the story. It belongs to a group of stories that during our initial period of working together changed little over time until one day two years later she an added contextual detail which turned it inside out. Hilda described the doctor’s spacious hill-top residence, and her responsibilities of caring for Dr Swann’s invalid wife (“an hysteric who couldn't do anything for herself”), their twin teenage boys (who attended private college in the city) along with another son and younger daughter living at home (pers. com. Hilda Wilson). Recalling the exhilaration of looking down over the sparkling lights of Adelaide at night from this position of apparent “privilege” on the summit, she related this undeniably as a success story, justifiably taking great pride in her achievements as a teenager, capable of stepping into the place of the non-Indigenous doctor's wife in running the large and demanding household. Successfully undertaking a wide range of duties employed in the care of a family, including the disabled mother, she is an active participant crucial to the lives of all in the household, including to the work of the doctor and the twin boys in private education. Hilda recalled that Mrs Swann was unable to eat without her assistance. As the oldest daughter of a large family Hilda had previously assisted in caring for her younger siblings. Told in this way, her account collapses social distinctions, delineating a shared social and physical space, drawing its analytic frame from an Indigenous ethos of subjectivity, relationality, reciprocity and care. Moreover Hilda’s narrative of domestic service demonstrates an assertion of agency that resists colonial and patriarchal hegemony and inverts the master/mistress-servant relationship, one she firmly eschews in favour of the self-affirming role of the lady of the house. (It stands in contrast to the abuse found in other accounts for example Read, Tucker, Kartinyeri. Often the key difference was a continuity of family connections and ongoing family support.) Indeed the home transformed into a largely feminised and cross-culturalised space in which she had considerable agency and responsibility when the doctor was absent. Hilda told me this story several times in much the same way during our frequent encounters over the next two years. Each telling revealed further details that fleshed a perspective gained from what Patricia Hill Collins terms an “epistemic privilege” via her “outsider-within status” of working within a white household, lending an understanding of its social mechanisms (12-15). She also stressed the extent of her duty of care in upholding the family’s well-being, despite the work at times being too burdensome. The Second Version: Coming to Terms with Intersecting Oppressions Later, as our relationship developed and deepened, when I began to record her life-narrative as part of my doctoral work, she added an unexpected detail that altered its context completely: It was all right except I slept outside in a tin shed and it was very cold at night. Mount Lofty, by far the coldest part of Adelaide, frequently experiences winter maximum temperatures of two or three degrees and often light snowfalls. This skilful reframing draws on Indigenous storytelling pedagogy and is expressly used to invite reflexivity, opening questions that move the listener from the personal to the public realm in which domestic service and the hegemony of the home are pivotal in coming to terms with the overlapping historical oppressions of class, gender, race and nation. Suddenly we witness her subjectivity starkly shift from one self-defined and allied with an equal power relationship – or even of dependency reversal cast as “de-facto doctor's wife” – to one diminished by inequity and power imbalance in the outsider-defined role of “mistreated servant”. The latter was signalled by the dramatic addition of a single signifying detail as a decoding device to a deeper layer of meaning. In this parallel stratum of the story, Hilda purposefully brings into relief the politics in which “the private domain of women's housework intersected with the public domain of governmental social engineering policies” (Haskins 4). As Aileen Moreton-Robinson points out, what for White Australia was cheap labour and a civilising mission, for Indigenous women constituted stolen children and slavery. Protection and then assimilation were government policies under which Indigenous women grew up. (96) Hilda was sent away from her family to work in 1927 by the universally-feared Sister Pearl McKenzie, a nurse who too-zealously (Katinyeri, Ngarrindjeri Calling, 23) oversaw the Chief Protector’s policies of “training” Aboriginal children from the South Australian missions in white homes once they reached fourteen (Haebich, 316—20). Indeed many prominent Adelaide hills’ families benefited from Aboriginal labour under this arrangement. Hilda explained her struggle with the immense cultural dislocation that removal into domestic service entailed, a removal her grandfather William Rankine had travelled from Raukkan to Government House to protest against less than a decade earlier (The Register December 21, 1923). This additional layer of story also illuminates Hilda’s capacity for resilience and persistence in finding a way forward through the challenge of her circumstances (Luthar et al.), drawing on her family networks and sense of personhood (Kickett). Hilda related that her father visited her at Mount Lofty twice, though briefly, on his way to shearing jobs in the south-east of the state. “He said it was no good me living like this,” she stated. Through his active intervention, reinforcement was requested and another teenager from Point Pearce, Hilda’s future husband’s cousin, Annie Sansbury, soon arrived to share the workload. But, Hilda explained, the onerous expectations coupled with the cultural segregation of retiring to the tin shed quickly became too much for Annie, who stayed only three months, leaving Hilda coping again alone, until her father applied additional pressure for a more suitable placement to be found for his daughter. In her next position, working for the family of a racehorse trainer, Hilda contentedly shared the bedroom with the small boy for whom she cared, and not long after returned to Point Pearce where she married Robert Wilson and began a family of her own. Gendered Resilience across Cultural Divides Hilda explicitly speaks into these spaces to educate me, because all but a few white women involved have remained silent about their complicity with state sanctioned practices which exploited Indigenous labour and removed children from their families through the policies of protection and assimilation. For Indigenous women, speaking out was often fraught with the danger of a deeper removal from family and Country, even of disappearance. Victoria Haskins writes extensively of two cases in New South Wales where young Aboriginal women whose protests concerning their brutal treatment at the hands of white employers, resulted in their wrongful and prolonged committal to mental health and other institutions (147-52, 228-39). In the indentured service of Indigenous women it is possible to see oppression operating through Eurocentric ideologies of race, class and gender, in which Indigenous women were assumed to take on, through displacement, the more oppressed role of white women in pre-second world war non-Aboriginal Australian society. The troubling silent shadow-figure of the “doctor’s wife” indeed provides a haunting symbol of - and also a forceful rebellion against – the docile upper middle-class white femininity of the inter-war era. Susan Bordo has argued that that “the hysteric” is archetypal of a discourse of ‘pathology as embodied protest’ in which the body may […] be viewed as a surface on which conventional constructions of femininity are exposed starkly to view in extreme or hyperliteral form. (20) Mrs Swann’s vulnerability contrasts markedly with the strength Hilda expresses in coping with a large family, emanating from a history of equitable gender relations characteristic of Ngarrindjeri society (Bell). The intersection of race and gender, as Marcia Langton contends “continues to require deconstruction to allow us to decolonise our consciousness” (54). From Hilda’s brief description one grasps a relationship resonant with that between the protagonists in Tracy Moffat's Night Cries, (a response to the overt maternalism in the film Jedda) in which the white mother finds herself utterly reliant on her “adopted” Aboriginal daughter at the end of her life (46-7). Resilience and Survival The different versions of story Hilda deploys, provide a pedagogical basis to understanding the broader socio-political framework of her overall life narrative in which an ability to draw on the cultural continuity of the past to transform the future forms an underlying dynamic. This demonstrated capacity to meet the challenging conditions thrown up by the settler-colonial state has its foundations in the connectivity and cultural strength sustained generationally in her family. Resilience moves from being individually to socially determined, as in Kickett’s model. During the onslaught of dispossession, following South Australia’s 1836 colonial invasion, Ngarrindjeri were left near-starving and decimated from introduced diseases. Pullume (c1808-1888), the rupuli (elected leader of the Ngarrindjeri Tendi, or parliament), Hilda’s third generation great-grandfather, decisively steered his people through the traumatic changes, eventually negotiating a middle-path after the Point McLeay Mission was established on Ngarrindjeri country in 1859 (Jenkin, 59). Pullume’s granddaughter, the accomplished, independent-thinking Ellen Sumner (1842—1925), played an influential educative role during Hilda’s youth. Like other Ngarrindjeri women in her lineage, Ellen Sumner was skilled in putari practice (female doctor) and midwifery culture that extended to a duty of care concerning women and children (teaching her “what to do and what not to do”), which I suggest is something Hilda herself drew from when working with the Swann family. Hilda’s mother and aunties continued aspects of the putari tradition, attending births and giving instruction to women in the community (Bell, 171, Hughes Grandmother, 52-4). As mentioned earlier, when the South Australian government moved to introduce The Training of Children Act (SA) Hilda’s maternal grandfather William Rankine campaigned vigorously against this, taking a petition to the SA Governor in December 1923 (Haebich, 315-19). As with Aunty Hilda, William Rankine used storytelling as a method to draw public attention to the inequities of his times in an interview with The Register which drew on his life-narrative (Hughes, My Grandmother, 61). Hilda’s father Wilfred Varcoe, a Barngarrla-Wirrungu man, almost a thousand kilometres away from his Poonindie birthplace, resisted assimilation by actively pursuing traditional knowledge networks using his mobility as a highly sought after shearer to link up with related Elders in the shearing camps, (and as we saw to inspect the conditions his daughter was working under at Mt Lofty). The period Hilda spent as a servant to white families to be trained in white ways was in fact only a brief interlude in a long life in which family connections, culture and belonging (Kickett) served as the backbone of her resilience and resistance. On returning to the Point Pearce Mission, Hilda successfully raised a large family and activated a range of community initiatives that fostered well-being. In the 1960s she moved to Adelaide, initially as the sole provider of her family (her husband later followed), to give her younger children better educational opportunities. Working with Aunty Gladys Elphick OBE through the Council of Aboriginal Women, she played a foundational role in assisting other Aboriginal women establish their families in the city (Mattingly et al., 154, Fisher). In Adelaide, Aunty Hilda became an influential, much loved Elder, living in good health to the age of ninety-six years. The ability to survive changing circumstances, to extend care over and over to her children and Elders along with qualities of leadership, determination, agency and resilience have passed down through her family, several of whom have become successful in public life. These include her great-grandson and former AFL football player, Michael O’Loughlin, her great-nephew Adam Goodes and her-grand-daughter, the cultural weaver Aunty Ellen Trevorrow. Arguably, resilience contributes to physical as well as cultural longevity, through caring for the self and others. Conclusion This story demonstrates how sociocultural dimensions of resilience are contextualised in practices of everyday lives. We see this in the way that Aunty Hilda Wilson’s self-narrated story resolutely defies attempts to know, subjugate and categorise, operating instead in accord with distinctively Aboriginal expressions of gender and kinship relations that constitute an Aboriginal sovereignty. Her storytelling activates a revision of collective history in ways that valorise Indigenous identity (Kirmayer et al.). Her narrative of agency and personal achievement, one that has sustained her through life, interacts with the larger narrative of state-endorsed exploitation, diffusing its power and exposing it to wider moral scrutiny. Resilience in this context is inextricably entwined with practices of cultural survival and resistance developed in response to the introduction of government policies and the encroachment of settlers and their world. We see resilience too operating across Hilda Wilson’s family history, and throughout her long life. The agency and strategies displayed suggest alternative realities and imagine other, usually more equitable, possible worlds. References Bell, Diane. Ngarrindjeri Wurruwarrin: A World That Is, Was and Will Be. Melbourne: Spinifex, 1998. Bordo, Susan. “The Body and the Reproduction of Femininity.” Writing on the Body: Female Embodiment and Feminist Theory. Eds. Katie Conboy, Nadia Medina, and Sarah Stanbury. New York: Columbia UP, 1997. 90-110. Collins, Patricia Hill. Black Feminist Thought. New York: Routledge, 2000. Fisher, Elizabeth M. "Elphick, Gladys (1904–1988)." Australian Dictionary of Biography. National Centre of Biography, Australian National University, 29 Sep. 2013. ‹http://adb.anu.edu.au/biography/elphick-gladys-12460/text22411>. Grieves, Victoria. Aboriginal Spirituality: Aboriginal Philosophy, The Basis of Aboriginal Social and Emotional Wellbeing, Melbourne University: Cooperative Research Centre for Aboriginal Health, 2009. Haebich, Anna. Broken Circles: The Fragmenting of Indigenous Families. Fremantle: Fremantle Arts Press, 2000. Haskins, Victoria. My One Bright Spot. London: Palgrave, 2005. Hughes, Karen. "My Grandmother on the Other Side of the Lake." PhD thesis, Department of Australian Studies and Department of History, Flinders University. Adelaide, 2009. ———. “Microhistories and Things That Matter.” Australian Feminist Studies 27.73 (2012): 269-278. ———. “I’d Grown Up as a Child amongst Natives.” Outskirts: Feminisms along the Edge 28 (2013). 29 Sep. 2013 ‹http://www.outskirts.arts.uwa.edu.au/volumes/volume-28/karen-hughes>. Jenkin, Graham. Conquest of the Ngarrindjeri. Adelaide: Rigby, 1979. Kartinyeri, Doris. Kick the Tin. Melbourne: Spinifex, 2000. Kartinyeri, Doreen. My Ngarrindjeri Calling, Adelaide: Wakefield, 2007. Kickett, Marion. “Examination of How a Culturally Appropriate Definition of Resilience Affects the Physical and Mental Health of Aboriginal People.” PhD thesis, Curtin University, 2012. Kirmayer, L.J., S. Dandeneau, E. Marshall, M.K. Phillips, K. Jenssen Williamson. “Rethinking Resilience from Indigenous Perspectives.” Canadian Journal of Psychiatry 56.2 (2011): 84-91. Luthar, S., D. Cicchetti, and B. Becker. “The Construct of Resilience: A Critical Evaluation and Guidelines for Future Work.” Child Development 71.3 (2000): 543-62. MacGill, Bindi, Julie Mathews, Ellen Trevorrow, Alice Abdulla, and Deb Rankine. “Ecology, Ontology, and Pedagogy at Camp Coorong,” M/C Journal 15.3 (2012). Mattingly, Christobel, and Ken Hampton. Survival in Our Own Land, Adelaide: Wakefield, 1988. Moreton-Robinson, Aileen. Talkin’ Up to the White Woman. St Lucia: UQP, 2000. Night Cries, A Rural Tragedy. Dir. Tracy Moffatt. Chili Films, 1990. Read, Peter. A Rape of the Soul So Profound. Crows Nest: Allen & Unwin, 2002. Tucker, Margaret. If Everyone Cared. Sydney: Ure Smith, 1977. Wanganeen, Elva. Personal Communication, 2000. Westphalen, Linda. An Anthropological and Literary Study of Two Aboriginal Women's Life Histories: The Impacts of Enforced Child Removal and Policies of Assimilation. New York: Mellen Press, 2011.

Introduction The scientific validity of climate change claims, how to intervene (if at all) in environmental, economic, political and social consequences of climate change, and the adaptation and mitigation needed with any given climate change scenario, are contested areas of public, policy and academic discourses. For marginalised populations, the climate discourses around adaptation, mitigation, vulnerability and resilience are of particular importance. This paper considers the silence around disabled people in these discourses. Marci Roth of the Spinal Cord Injury Association testified before Congress in regards to the Katrina disaster: [On August 29] Susan Daniels called me to enlist my help because her sister in-law, a quadriplegic woman in New Orleans, had been unsuccessfully trying to evacuate to the Superdome for two days. […] It was clear that this woman, Benilda Caixetta, was not being evacuated. I stayed on the phone with Benilda, for the most part of the day. […] She kept telling me she’d been calling for a ride to the Superdome since Saturday; but, despite promises, no one came. The very same paratransit system that people can’t rely on in good weather is what was being relied on in the evacuation. […] I was on the phone with Benilda when she told me, with panic in her voice “the water is rushing in.” And then her phone went dead. We learned five days later that she had been found in her apartment dead, floating next to her wheelchair. […] Benilda did not have to drown. (National Council on Disability, emphasis added) According to the Intergovernmental Panel on Climate Change (IPCC), adaptation is the “Adjustment in natural or human systems in response to actual or expected climatic stimuli or their effects, which moderates harm or exploits beneficial opportunities” (IPCC, Climate Change 2007). Adaptations can be anticipatory or reactive, and depending on their degree of spontaneity they can be autonomous or planned (IPCC, Fourth Assessment Report). Adaptations can be private or public (IPCC, Fourth Assessment Report), technological, behavioural, managerial and structural (National Research Council of Canada). Adaptation, in the context of human dimensions of global change, usually refers to a process, action or outcome in a system (household, community, group, sector, region, country) in order for that system to better cope with, manage or adjust to some changing condition, stress, hazard, risk or opportunity (Smit and Wandel). Adaptation can encompass national or regional strategies as well as practical steps taken at the community level or by individuals. According to Smit et al, a framework for systematically defining adaptations is based on three questions: (i) adaptation to what; (ii) who or what adapts; and (iii) how does adaptation occur? These are essential questions that have to be looked at from many angles including cultural and anthropological lenses as well as lenses of marginalised and highly vulnerable populations. Mitigation (to reduce or prevent changes in the climate system), vulnerability (the degree to which a system is susceptible to, and unable to cope with, the adverse effects of climate change), and resilience (the amount of change a system can undergo without changing state), are other important concepts within the climate change discourse. Non-climate stresses can increase vulnerability to climate change by reducing resilience and can also reduce adaptive capacity because of resource deployment to competing needs. Extending this to the context of disabled people, ableism (sentiment to expect certain abilities within humans) (Wolbring, “Is there an end to out-able?”) and disablism (the unwillingness to accommodate different needs) (Miller, Parker and Gillinson) are two concepts that will thus play themselves out in climate discourses. The “Summary for Policymakers” of the IPCC 2007 report, Climate Change 2007: Impacts, Adaptation and Vulnerability, states: “Poor communities can be especially vulnerable, in particular those concentrated in high-risk areas. They tend to have more limited adaptive capacities, and are more dependent on climate-sensitive resources such as local water and food supplies.” From this quote one can conclude that disabled people are particularly impacted, as the majority of disabled people live in poverty (Elwan). For instance, CARE International, a humanitarian organisation fighting global poverty, the UN Office for the Coordination of Humanitarian Affairs, and Maplecroft, a company that specialises in the calculation, analysis and visualisation of global risks, conclude: “The degree of vulnerability is determined by underlying natural, human, social, physical and financial factors and is a major reason why poor people—especially those in marginalised social groups like women, children, the elderly and people with disabilities—are most affected by disasters” (CARE International). The purpose of this paper is to expose the reader to (a) how disabled people are situated in the culture of the climate, adaptation, mitigation and resilience discourse; (b) how one would answer the three questions, (i) adaptation to what, (ii) who or what adapts, and (iii) how does adaptation occur (Smit et al), using a disabled people lens; and (c) what that reality of the involvement of disabled people within the climate change discourse might herald for other groups in the future. The paper contends that there is a pressing need for the climate discourse to be more inclusive and to develop a new social contract to modify existing dynamics of ableism and disablism so as to avoid the uneven distribution of evident burdens already linked to climate change. A Culture of Neglect: The Situation of Disabled People As climates changes, environmental events that are classified as natural disasters are expected to be more frequent. In the face of recent disaster responses, how effective have these efforts been as they relate to the needs and challenges faced by disabled people? Almost immediately after Hurricane Katrina devastated the Gulf Coast, the National Council on Disability (NCD) in the United States estimated that 155,000 people with disabilities lived in the three cities hardest hit by the hurricane (about 25 per cent of the cities’ populations). The NCD urged emergency managers and government officials to recognise that the need for basic necessities by hurricane survivors with disabilities was “compounded by chronic health conditions and functional impairments … [which include] people who are blind, people who are deaf, people who use wheelchairs, canes, walkers, crutches, people with service animals, and people with mental health needs.” The NCD estimated that a disproportionate number of fatalities were people with disabilities. They cited one statistic from the American Association of Retired Persons (AARP): “73 per cent of Hurricane Katrina-related deaths in New Orleans area were among persons age 60 and over, although they comprised only 15 per cent of the population in New Orleans.” As the NCD stated, “most of those individuals had medical conditions and functional or sensory disabilities that made them more vulnerable. Many more people with disabilities under the age of 60 died or were otherwise impacted by the hurricanes.” As these numbers are very likely linked to the impaired status of the elderly, it seems reasonable to assume similar numbers for non-elderly disabled people. Hurricane Katrina is but one example of how disabled people are neglected in a disaster (Hemingway and Priestley; Fjord and Manderson). Disabled people were also disproportionately impacted in other disasters, such as the 1995 Great Hanshin Earthquake in Japan (Nakamura) or the 2003 heatwave in France, where 63 per cent of heat-related deaths occurred in institutions, with a quarter of these in nursing homes (Holstein et al.). A review of 18 US heatwave response plans revealed that although people with mental or chronic illnesses and the homeless constitute a significant proportion of the victims in recent heatwaves, only one plan emphasised outreach to disabled persons, and only two addressed the shelter and water needs of the homeless (Ebi and Meehl; Bernhard and McGeehin). Presence of Disabled People in Climate Discourse Although climate change will disproportionately impact disabled people, despite the less than stellar record of disaster adaptation and mitigation efforts towards disabled people, and despite the fact that other social groups (such as women, children, ‘the poor’, indigenous people, farmers and displaced people) are mentioned in climate-related reports such as the IPCC reports and the Human Development Report 2007/2008, the same reports do not mention disabled people. Even worse, the majority of the material generated by, and physically set up for, discourses on climate, is inaccessible for many disabled people (Australian Human Rights Commission). For instance, the IPCC report, Climate Change 2007: Impacts, Adaptation and Vulnerability, contains Box 8.2: Gender and natural disasters, makes the following points: (a) “men and women are affected differently in all phases of a disaster, from exposure to risk and risk perception; to preparedness behaviour, warning communication and response; physical, psychological, social and economic impacts; emergency response; and ultimately to recovery and reconstruction”; (b) “natural disasters have been shown to result in increased domestic violence against, and post-traumatic stress disorders in, women”; and (c) “women make an important contribution to disaster reduction, often informally through participating in disaster management and acting as agents of social change. Their resilience and their networks are critical in household and community recovery.” The content of Box 8.2 acknowledges the existence of different perspectives and contributions to the climate discourse, and that it is beneficial to explore these differences. It seems reasonable to assume that differences in perspectives, contributions and impact may well also exist between people with and without disabilities, and that it may be likewise beneficial to explore these differences. Disabled people are differently affected in all phases of a disaster, from exposure to risk and risk perception; to preparedness behaviour, warning communication and response; physical, psychological, social and economic impacts; emergency response; and ultimately to recovery and reconstruction. Disabled people could also make an important contribution to disaster reduction, often informally through participating in disaster management and acting as agents of social change. Their resilience and their networks are critical in household and community recovery, important as distributors of relief efforts and in reconstruction design. The Bonn Declaration from the 2007 international conference, Disasters are always Inclusive: Persons with Disabilities in Humanitarian Emergency Situations, highlighted many problems disabled people are facing and gives recommendations for inclusive disaster preparedness planning, for inclusive response in acute emergency situations and immediate rehabilitation measures, and for inclusive post-disaster reconstruction and development measures. Many workshops were initiated by disabled people groups, such as Rehabilitation International. However, the disabled people disaster adaptation and mitigation discourse is not mainstreamed. Advocacy by people with disability for accessible transport and universal or “life-cycle” housing (among other things) shows how they can contribute significantly to more effective social systems and public facilities. These benefit everyone and help to shift public expectations towards accessible and flexible amenities and services—for example, emergency response and evacuation procedures are much easier for all if such facilities are universally accessible. Most suggestions by disabled people for a more integrative, accessible physical environment and societal attitude benefit everyone, and gain special importance with the ever-increasing proportion of elderly people in society. The IPCC Fourth Assessment Report is intended to be a balanced assessment of current knowledge on climate change mitigation. However, none of the 2007 IPCC reports mention disabled people. Does that mean that disabled people are not impacted by, or impact, climate change? Does no knowledge of adaptation, mitigation and adaptation capacity from a disabled people lens exist, or does the knowledge not reach the IPCC, or does the IPCC judge this knowledge as irrelevant? This culture of neglect and unbalanced assessment of knowledge evident in the IPCC reports was recognised before for rise of a ‘global’ climate discourse. For instance, a 2001 Canadian government document asked that research agendas be developed with the involvement of, among others, disabled people (Health Canada). The 2009 Nairobi Declaration on Africa’s response to climate change (paragraph 36) also asks for the involvement of disabled people (African Ministerial Conference on the Environment). However, so far nothing has trickled up to the international bodies, like the IPCC, or leading conferences such as the United Nations Climate Change Conference Copenhagen 2009. Where Will It End? In his essay, “We do not need climate change apartheid in adaptation”, in the Human Development Report 2007/2008, Archbishop Desmond Tutu suggests that we are drifting into a situation of global adaptation apartheid—that adaptation becomes a euphemism for social injustice on a global scale (United Nations Development Programme). He uses the term “adaptation apartheid” to highlight the inequality of support for adaptation capacity between high and low income countries: “Inequality in capacity to adapt to climate change is emerging as a potential driver of wider disparities in wealth, security and opportunities for human development”. I submit that “adaptation apartheid” also exists in regard to disabled people, with the invisibility of disabled people in the climate discourse being just one facet. The unwillingness to accommodate, to help the “other,” is nothing new for disabled people. The ableism that favours species-typical bodily functioning (Wolbring, “Is there an end to out-able?”; Wolbring, “Why NBIC?”) and disablism (Miller, Parker, and Gillinson)—the lack of accommodation enthusiasm for the needs of people with ‘below’ species-typical body abilities and the unwillingness to adapt to the needs of “others”—is a form of “adaptation apartheid,” of accommodation apartheid, of adaptation disablism that has been battled by disabled people for a long time. In a 2009 online survey of 2000 British people, 38 per cent believed that most people in British society see disabled people as a “drain on resources” (Scope). A majority of human geneticist concluded in a survey in 1999 that disabled people will never be given the support they need (Nippert and Wolff). Adaptation disablism is visible in the literature and studies around other disasters. The 1988 British Medical Association discussion document, Selection of casualties for treatment after nuclear attack, stated “casualties whose injuries were likely to lead to a permanent disability would receive lower priority than those expected to fully recover” (Sunday Morning Herald). Famine is seen to lead to increased infanticide, increased competitiveness and decreased collaboration (Participants of the Nuclear Winter: The Anthropology of Human Survival Session). Ableism and disablism notions experienced by disabled people can now be extended to include those challenges expected to arise from the need to adapt to climate change. It is reasonable to expect that ableism will prevail, expecting people to cope with certain forms of climate change, and that disablism will be extended, with the ones less affected being unwilling to accommodate the ones more affected beyond a certain point. This ableism/disablism will not only play itself out between high and low income countries, as Desmond Tutu described, but also within high income countries, as not every need will be accommodated. The disaster experience of disabled people is just one example. And there might be climate change consequences that one can only mitigate through high tech bodily adaptations that will not be available to many of the ones who are so far accommodated in high income countries. Desmond Tutu submits that adaptation apartheid might work for the fortunate ones in the short term, but will be destructive for them in the long term (United Nations Development Programme). Disability studies scholar Erik Leipoldt proposed that the disability perspective of interdependence is a practical guide from the margins for making new choices that may lead to a just and sustainable world—a concept that reduces the distance between each other and our environment (Leipoldt). This perspective rejects ableism and disablism as it plays itself out today, including adaptation apartheid. Planned adaptation involves four basic steps: information development and awareness-raising; planning and design; implementation; and monitoring and evaluation (Smit et al). Disabled people have important knowledge to contribute to these four basic steps that goes far beyond their community. Their understanding and acceptance of, for example, the concept of interdependence, is just one major contribution. Including the concept of interdependence within the set of tools that inform the four basic steps of adaptation and other facets of climate discourse has the potential to lead to a decrease of adaptation apartheid, and to increase the utility of the climate discourse for the global community as a whole. References African Ministerial Conference on the Environment. Nairobi Declaration on the African Process for Combating Climate Change. 2009. 26 Aug. 2009 ‹ http://www.unep.org/roa/Amcen/Amcen_Events/3rd_ss/Docs/nairobi-Decration-2009.pdf ›. American Association of Retired Persons. We Can Do Better: Lessons Learned for Protecting Older Persons in Disasters. 2009. 26 Aug. 2009 ‹ http://assets.aarp.org/rgcenter/il/better.pdf ›. Australian Human Rights Commission. “Climate Change Secretariat Excludes People with Disabilities.” 2008. 26 Aug. 2009 ‹ http://www.hreoc.gov.au/about/media/media_releases/2008/95_08.html ›. Bernhard, S., and M. McGeehin. “Municipal Heatwave Response Plans.” American Journal of Public Health 94 (2004): 1520-21. CARE International, the UN Office for the Coordination of Humanitarian Affairs, and Maplecroft. Humanitarian Implications of Climate Change: Mapping Emerging Trends and Risk Hotspots for Humanitarian Actors. CARE International, 2008. 26 Aug. 2009 ‹ http://www.careclimatechange.org/files/reports/Human_Implications_PolicyBrief.pdf ›, ‹ http://www.careclimatechange.org/files/reports/CARE_Human_Implications.pdf ›. "Disasters Are Always Inclusive: Persons with Disabilities in Humanitarian Emergency Situations." Bonn Declaration from the International Conference: Disasters Are Always Inclusive: Persons with Disabilities in Humanitarian Emergency Situations. 2007. 26 Aug. 2009 ‹ http://www.disabilityfunders.org/webfm_send/6, http://www.disabilityfunders.org/emergency_preparedness ›, ‹ http://bezev.de/bezev/aktuelles/index.htm ›. Ebi, K., and G. Meehl. Heatwaves and Global Climate Change: The Heat Is On: Climate Change and Heatwaves in the Midwest. 2007. 26 Aug. 2009 ‹ www.pewclimate.org/docUploads/Regional-Impacts-Midwest.pdf ›. Elwan, A. Poverty and Disability: A Survey of the Literature. Worldbank, Social Protection Discussion Paper Series (1999): 9932. 26 Aug. 2009 ‹ http://siteresources.worldbank.org/DISABILITY/Resources/Poverty/Poverty_and_Disability_A_Survey_of_the_Literature.pdf ›. Fjord, L., and L. Manderson. “Anthropological Perspectives on Disasters and Disability: An Introduction.” Human Organisation 68.1 (2009): 64-72. Health Canada. First Annual National Health and Climate Change Science and Policy Research Consensus Conference: How Will Climate Change Affect Priorities for Your Health Science and Policy Research? Health Canada, 2001. 26 Aug. 2009 ‹ http://www.hc-sc.gc.ca/ewh-semt/pubs/climat/research-agenda-recherche/population-eng.php ›. Hemingway, L., and M. Priestley. “Natural Hazards, Human Vulnerability and Disabling Societies: A Disaster for Disabled People?” The Review of Disability Studies (2006). 26 Aug. 2009 ‹ http://www.rds.hawaii.edu/counter/count.php?id=13 ›. Holstein, J., et al. “Were Less Disabled Patients the Most Affected by the 2003 Heatwave in Nursing Homes in Paris, France?” Journal of Public Health Advance 27.4 (2005): 359-65. Intergovernmental Panel on Climate Change. Climate Change 2007: Impacts, Adaptation and Vulnerability. 2007. 26 Aug. 2009 ‹ http://www.ipcc.ch/publications_and_data/publications_ipcc_fourth_assessment_report_wg2_report_impacts_adaptation_and_vulnerability.htm ›. Intergovernmental Panel on Climate Change. “Summary for Policymakers.” Eds. O. F. Canziani, J. P. Palutikof, P. J. van der Linden, C. E. Hanson, and M.L.Parry. Cambridge, UK: Cambridge University Press, 2007. 7-22. 26 Aug. 2009 ‹ http://www.ipcc.ch/pdf/assessment-report/ar4/wg2/ar4-wg2-spm.pdf ›. Intergovernmental Panel on Climate Change. IPCC Fourth Assessment Report Working Group III Report: Mitigation of Climate Change Glossary. 2007. 26 Aug. 2009 ‹ http://www.ipcc.ch/ipccreports/ar4-wg3.htm, http://www.ipcc.ch/pdf/assessment-report/ar4/wg3/ar4-wg3-annex1.pdf ›. Leipoldt, E. “Disability Experience: A Contribution from the Margins. Towards a Sustainable Future.” Journal of Futures Studies 10 (2006): 3-15. Miller, P., S. Parker and S. Gillinson. “Disablism: How to Tackle the Last Prejudice.” Demos, 2004. 26 Aug. 2009 ‹ http://www.demos.co.uk/files/disablism.pdf ›. Nakamura, K. “Disability, Destitution, and Disaster: Surviving the 1995 Great Hanshin Earthquake in Japan.” Human Organisation 68.1 (2009): 82-88. National Council on Disability, National Council on Independent Living, National Organization on Disability, and National Spinal Cord Injury Association and the Paralyzed Veterans of America. Emergency Management and People with Disabilities: before, during and after Congressional Briefing, 10 November 2005. 26 Aug. 2009 ‹ http://www.ncd.gov/newsroom/publications/2005/transcript_emergencymgt.htm ›. National Council on Disability. National Council on Disability on Hurricane Katrina Affected Areas. 2005. 26 Aug. 2009 ‹ http://www.ncd.gov/newsroom/publications/2005/katrina2.htm ›. National Research Council of Canada. From Impacts to Adaptation: Canada in a Changing Climate 2007. 26 Aug. 2009 ‹ http://adaptation.nrcan.gc.ca/assess/2007/pdf/full-complet_e.pdf ›. Nippert, I. and G. Wolff. “Ethik und Genetik: Ergebnisse der Umfrage zu Problemaspekten angewandter Humangenetik 1994-1996, 37 Länder.” Medgen 11 (1999): 53-61. Participants of the Nuclear Winter: The Anthropology of Human Survival Session. Proceedings of the 84th American Anthropological Association's Annual Meeting. Washington, D.C., 6 Dec. 1985. 26 Aug. 2009 ‹ http://www.fas.org/sgp/othergov/doe/lanl/lib-www/la-pubs/00173165.pdf ›. Scope. “Most Britons Think Others View Disabled People ‘As Inferior’.” 2009. 26 Aug. 2009 ‹ http://www.scope.org.uk/cgi-bin/np/viewnews.cgi?id=1244379033, http://www.comres.co.uk/resources/7/Social%20Polls/Scope%20PublicPoll%20Results%20May09.pdf ›. Smit, B., et al. “The Science of Adaptation: A Framework for Assessment.” Mitigation and Adaptation Strategies for Global Change 4 (1999): 199-213. Smit, B., and J. Wandel. “Adaptation, Adaptive Capacity and Vulnerability.” Global Environmental Change 16 (2006): 282-92. Sunday Morning Herald. “Who Lives and Dies in Britain after the Bomb.” Sunday Morning Herald 1988. 26 Aug. 2009 ‹ http://news.google.com/newspapers?nid=1301&dat=19880511&id=wFYVAAAAIBAJ&sjid=kOQDAAAAIBAJ&pg=3909,113100 ›. United Nations Development Programme. Human Development Report 2007/2008: Fighting Climate Change – Human Solidarity in a Divided World. 2008. 26 Aug. 2009 ‹ http://hdr.undp.org/en/media/HDR_20072008_EN_Complete.pdf ›. Wolbring, Gregor. “Is There an End to Out-Able? Is There an End to the Rat Race for Abilities?” M/C Journal 11.3 (2008). 26 Aug. 2009 ‹ http://journal.media-culture.org.au/index.php/mcjournal/article/viewArticle/57 ›. Wolbring, Gregor. “Why NBIC? Why Human Performance Enhancement?” Innovation: The European Journal of Social Science Research 21.1 (2008): 25-40.

Photo by Evgeni Tcherkasski on Unsplash ABSTRACT Public health ethics has been contingent on a political landscape leading to several operational hurdles, especially during global health emergencies. Several scholars have pointed out that liberal decision-making has prevented public health institutions from achieving their goals. Thus, the need for a substantive outlook on public health has never been stronger. First, this article highlights the ethical tension and limitations of a presumptive approach to public health that a vaccination policy might produce in a liberal political landscape. Second, influenced by the works of Angus Dawson, this article emphasizes the importance of a substantive approach to public health, especially in a post-COVID era. Last, it looks at how TM Scanlon’s theory of contractualism aids in framing a substantive approach to health policy design and the added advantages of the theory. INTRODUCTION A public health intervention like a vaccination program for COVID-19, let alone a mandatory one, faces difficulties in implementation as it presents a clash between the role of the government and liberty of its citizens.[1] The clash stems from public health operating in a liberal political landscape that accords great regard for individual liberty. The government, in good conscience, is right in feeling morally obligated to act in ways that serve to prevent the pandemic from escalating. To represent the citizens, governments and policymakers prioritize achieving and maintaining herd immunity. The tension of the state versus individual liberty questions the extent to which governments can go to implement a vaccination policy. In trying to balance the considerations of individual liberty and the scope of the state to impose an intervention, the Nuffield Council on Bioethics came up with a design known as the ‘intervention ladder.’[2] The takeaway from the intervention ladder is that the state has the burden of proof in justifying reasons for implementing a particular policy.[3] Such justified trade-offs envisioned from the intervention ladder have guided policymakers in their attempt to design and shape interventions. However, public health ethics and even the intervention ladder view public health through a presumptive or a moderate liberal lens.[4] In a presumptive approach or a moderate-liberal approach to public health, policymakers regard values like liberty or autonomy as more prominent when weighed against values like creation of public goods and their maintenance.[5] A libertarian approach favors liberty and autonomy even more strongly. The substantive view of public health holds that values, such as liberty and autonomy, do not automatically hold precedence over community-oriented values such as public goods creation.[6] Some have critiqued the intervention ladder endorsed by the Nuffield Council of Bioethics. Angus Dawson remarks that the intervention ladder as a metaphor prevents the act of climbing. He claims the ladder assumes that liberty is the only guiding principle in policymaking. Such a view neglects any responsibility the citizens have in achieving public goods and maintaining them.[7] The emphasis on the drawbacks of a presumptive approach, especially in a situation like the COVID-19 pandemic, leads us to question should public health undergo a redefinition? The approach in public health focusing on non-interference stems from traditional clinical bioethics.[8] However, I argue that public health ethics in a pandemic should accord less emphasis to individual liberty and evaluate every ethical value on a level playing field. Individual liberty provides less platform for action in situations where the community has not established herd immunity. Accountability for the harm principle and maintenance of public goods override concerns surrounding liberty.[9] Angus Dawson argues that with more participation in a vaccination program, protection of public goods from disease can be created faster.[10] Characterizing public health as an antagonist to individual liberty undermines the confidence in public health institutions and interventions for which public trust is vital. Although the government may propose a mandatory vaccination policy when voluntary measures fail to meet public health requirements, clear scientific evidence and accountability for public welfare should be the guiding principle. Thus, resetting the parameters gauging a public health intervention is the starting point to prepare for future pandemics. In Resetting the Parameters, Angus Dawson suggests that utilitarianism or contractualism could serve as philosophical frameworks that may aid in framing a substantive approach to public health.[11] Evaluating utilitarianism and contractualism according to the COVID-19 facts would help clarify which is better suited to framing a substantive public health approach. l. Is Utilitarianism Substantive? Under utilitarianism, the morbid circumstances of the COVID-19 pandemic urge us to act in ways that translate to maximizing the overall good. Utilitarianism is a philosophical theory that prides itself on maximizing the best of outcomes for the maximum number of people. In an ideal utilitarian framework, a morally right act does good for all. Utilitarians consider utility the single determining variable that should guide actions.[12] The actionable aspect of a utilitarian framework is its ability to quantify thresholds or markers that mostly dwell in the abstract. In Utilitarianism and the Pandemic, Savulescu et al. outline certain determinants as aids in applying utilitarianism.[13] Looking at the aids in the context of a mandatory vaccination policy in light of COVID-19, shows some pitfalls of utilitarianism. The first utilitarian aid is to save the maximum number of lives.[14] Rightly so, an intuitive starting point in a pandemic with striking mortality rates is attempting to save the most lives. However, implementing and justifying a policy with the aim of saving the highest number of lives is complex. While a high number of deaths is a concern, it is reductionist to concentrate only on the end goal and not the means through which such a goal is attained. The second utilitarian aid is the length of life.[15] The length of benefit gained from an outcome is crucial for utilitarians. The duration of a benefit determines the quantity of good produced. As an extension, younger people should then, theoretically, count for more than older individuals in prioritizing benefits. Such prioritization has been a matter of concern during the COVID-19 pandemic. While it is true that younger people might tend to benefit more, the pathology of COVID-19 goes against such logic. Elderly populations have experienced disproportionately more severe cases. Therefore, prioritizing youth when the elderly are suffering more of the harm would be ethically contentious.[16] The third utilitarian aid is the quality-of-life post-intervention.[17] Through measures such as QALYs and DALYs,[18] utilitarians have attempted to quantify each individual's quality after an intervention. This quantification can result in connecting an individual’s quality of life to their social worth. From a utilitarian viewpoint, a person's ability to produce relevance in society becomes a key determinant in shaping public policy. By extension, people born with disabilities such as mental illness or late-stage dementia can be overlooked merely because they lack "social value.”[19] And yet, “taboo trade-offs occur when we are forced to put a finite monetary value on these sacred values [life, health, ability], when we acknowledge that there is a maximum ‘price’ that we want to pay to uphold values that should be of ‘infinite’ value.” [20]. As such, it is unethical to place a value on someone's life based on the duration or quality of life they may have after an intervention. Besides creating difficulty in assessing the quality of life, measures such as QALYs do not address the nuances in providing healthcare. In Economic Evaluation of Mental Health Interventions, Luyten et al. discuss several operational changes that account for these nuances.[21] Utilitarians believe in a moral indifference between actions and omissions as the fourth aid.[22] It does not matter how a result is achieved as long as it benefits the common good. Putting forward a bad policy is the same as not putting forward a policy. In the ever-changing and unpredictable dynamics of the COVID-19 pandemic, actions and omissions have different moral implications. Equating them often places an unfair burden on lawmakers, leaving them emotionally and morally exhausted as they weigh the advantages and risks of various outcomes. Actively avoiding social biases, feelings, intuitions, and heuristics is the fifth aid.[23] The pandemic elicits strong feelings and aggressively tests beliefs. During the pandemic, some profoundly troubling ethical dilemmas stemmed from bias. In a utilitarian system, a mandatory vaccination policy aimed at crossing the threshold for herd immunity may overlook groups of people who are vulnerable due to a lack of access to the social determinants of health. Attempting to avoid feelings and intuitions all the time does not always result in the creation of a fair policy. Anti-vaccination activists use emotion to further their cause, hence it is critical that politicians consider the feelings at stake for the general public when enacting a mandatory vaccination policy. While utilitarianism has benefits such as developing simple operationalizable concepts, providing a quantitative check, and a balance sheet of risks and benefits, it is based on an ethical dystopia. Utilitarian policies can treat people as a means to an end by focusing solely on outcomes. Utilitarianism rests on a presumptive outlook toward public health by replacing liberty with utility. It ignores fair and just distribution and allocation of resources. Utilitarianism is not the most ethical approach to pandemic vaccination policy. ll. Is Contractualism Substantive? The libertarian and utilitarian frameworks assume positive and negative connotations to different actions. They hold that certain acts are right and certain acts are wrong. A libertarian might hold that unnecessary infringement of individual liberty is not acceptable, while a utilitarian might be of the opinion that actions that contribute to disutility are unfavorable for the promotion of the greatest happiness principle.[24] Contractualism is a philosophy that values the social contract. A contractualist approach begins its discourse by arguing that actions have inherent neutrality.[25] By saying that, “being valuable is not always a matter of being ‘to be promoted’”[26], Scanlon does not neglect the value of certain actions but urges us to respond to value through other means, as well as to find value in plurality. In What We Owe to Each Other, Scanlon finds morality through the ability to reason while attributing inherent neutrality to our actions. A discourse in contractualism does not begin by presuming that values such as liberty or autonomy hold precedence among other ethical values, i.e., it is not presumptive in its approach. Instead, he locates morality in the ability to reason and find justifications for certain actions. Thus, compared to utilitarianism, contractualism allows for a substantive approach by holding all the relevant ethical values in a level playing field. Liberty would gain precedence when justifications for safeguarding it are strong and cannot be reasonably rejected. The same goes for other values, such as promoting public goods. In short, an action is termed wrong when “the principle that allows for it, can be reasonably rejected.”[27] For Scanlon, justifiability to others is the normative determinant of right or wrong.[28] He proceeds to say that the value of justifiability is the underlying premise of our duties. Additionally, Verweij argues that treating people rationally occurs by treating them in “ways they cannot reasonably reject.”[29] By disregarding any a priori assumptions about the importance of different values, people can find and construct values that cannot be reasonably rejected as they would be justified. Scanlon believes that this can be attained if we reflect on what we owe to each other. lll. The Inherent Moral Neutrality Allows for a Substantive Approach A contractualist approach has implications for framing a substantive approach to public health. These values have been adapted from Scanlon and Verweij, and the elaboration has been framed in the context of COVID-19. The inherent neutrality of principles that contractualism holds becomes crucial while devising a public health intervention. The COVID-19 pandemic presents a situation where otherwise acceptable ethical principles require scrutiny. A blank state where there are no a priori principles that suggest which acts are morally justified and which are not helps us navigate the operational principles involved in a vaccination policy. Thus, values such as liberty, utility, and autonomy are viewed on the same level as the creation of public goods, fairness in contribution, and avoiding collective harm. a. Arriving at Principles Starting with the inherent neutrality, the state, policymakers, and the public can identify ethical principles that would form a part of the vaccination policy smorgasbord. In a public health framework where negotiation is a crucial aspect in its implementation, it is important that all the stakeholders aim to find principles that are acceptable for everyone. This would culminate with principles of action that would produce the least number of complaints by all the parties involved. If an individual has very strong reservations against a principle, these cannot be outweighed by weaker reservations held by others.[30] b. Reasonable Rejection as a Marker of Deliberation A mandatory vaccination policy in a contractualist framework would then have to incorporate reasonable rejection. A framework based on reasonable rejection includes a variety of moral considerations that shape well-being and provide a basis for fairness, choice, and responsibility. Scanlon makes an important remark in the thesis of What We Owe to Each Other: the acceptability of a principle depends on a one-by-one assessment of the strength of individuals' reasons for rejecting the principles compared to any existing alternatives. In other words, for Scanlon, what is foundational for contractualism is not minimizing what is undesirable but constructing principles no one can reasonably reject. In the context of COVID-19, a person should be able to justify the level of precaution he takes to anyone who would bear the risk of exposure. Each individual would then have strong reasons for contributing to herd immunity with regard to their duty to protect the vulnerable. The justification to forego vaccination would need to be strong.[31] The difference in a contractualist approach is that it provides a platform for valid concerns from the public. This allows more room for dialogue and for individual liberty, which seems to form a significant part of the critique. A plan of action that allows for individual concerns such as safety, efficacy, and strong medical reasons to forego vaccination encourages inclusivity in policymaking. Another public concern is that public health institutions have alienated themselves from society in general.[32]A dialogue between the stakeholders would remedy such a notion and help redefine public health according to how Dawson and Verweij view “public”– as a social entity/target as well as a mode of intervention (requiring collective action).[33] Contractualism, like the rest of the ethical frameworks, has its own set of critiques. In Obligatory Precautions Against Infection, Marcel Verweij argues that a contractualist theory inadvertently ends up asking for excessive precautions. The first claim that contractualism asks for excessive precautions arises from the fact that a contractualist approach does not consider the consequences of individual actions.[34] He believes that since consequences are not weighted, one individual’s wish to forego precautionary measures does not justify another’s non-compliance towards precaution, culminating in the other having to take excessive precautions. He also criticizes the contractualist deliberation for its failure to focus on the consequences of individual acts but on creating universalizable principles.[35] While this may seem true, such a conclusion rests on the fact that the consequences of individual acts are not weighted. However, an excerpt from Verweij’s paper offers evidence that contractualism does weigh individual acts: Suppose that we both aim to find moral principles that regulate our interaction and that can be accepted by both of us. If you then propose a principle that imposes many risks on me but none for you, then it would be reasonable if I were to reject it (especially if there are alternative principles that would yield much lower risks).[36] Both a consequentialist approach and a contractualist approach share the language of risks and burdens. For the utilitarian, risks and burdens are consequences of an action, whereas, for the contractualist, they are consequences of accepting or rejecting a principle. In the excerpt above, when an individual assesses the risks imposed, a consequentialist way of thinking is incorporated in contractualism and consequences to individuals do matter and are weighed. Verweij’s contention that a contractualist approach does not focus on individual consequences is not supported, and, as a logical extension, the argument of excessive precautions begins to fade. Being vaccinated would absolve us of having to take excessive precautions. Upon crossing the threshold of herd immunity, excessive precautions such as masks, social distancing, rigorous testing pre- as well as post-travel, and obsessively checking our phones for exposure can be done away with. The COVID-19 pandemic has immersed us in routines of excessive precautionary measures that it has become normalized for most of us. Thus, being vaccinated and covering society with a blanket of herd immunity removes the need for excessive precautions. lV. Bridging What “Is” and What “Ought” To Be Although contractualism presents a perspective that best suits a substantive approach to public health, it appears desirable only in theory. There exists a distinct reality outside of academia – politics, societal engagement, and governance reflect a different picture. This can be thought of as the gap between the is and the ought. We could envision and claim that a mandatory vaccination policy ought to be implemented in a certain manner, however, it might not be. In her paper, Realizing Bioethics’ Goals in Practice: Ten Ways “Is” Can Help “Ought,” Mildred Z. Solomon provides several reasons for this disconnect.[37] The general theme is the importance of empirical research – the need to find a balance between normative assumptions and empirical evidence – and how policymakers can, in turn, use such evidence to fine-tune the policy design process. Contractualism can prove especially useful to bridge the divide between is and ought. Theories of libertarian philosophy and utilitarianism rest on a design based on a normative approach that values liberty and utility and should guide the policymaking process. However, contractualism separates itself from these theories since constructing principles justifiable for all, and the idea of reasonable rejection must rely on empirical evidence. Engagement between various stakeholders and recognizing the plurality in values helps bridge the disconnect between the is and the ought. This is more important in the context of a mandatory vaccination policy since its requirement arises only if voluntary vaccination policies fail. Knowing why vaccination rates are low and how better to reach herd immunity will be important empirical evidence that can fine-tune the policy. In Re-enchanting Democracy as a Mode of Governance, Patsy Healey acknowledges that a struggle for political change often focuses on installing new policy designs.[38] Healey provides a list of qualities to keep in mind when designing a more people-centered policy initiative. The first quality is recognizing a shared, diverse, and conflictual political community where distributive justice is vital. The second is to foster is respect for different arguments, positions, and feelings— considering groups with conflicting values as adversaries but not enemies. The third quality is that of an ‘intelligent’ and multi-sided discussion of issues and reasoning ‘in public.’ The fourth is the fostering of respect for the role of the government while simultaneously recognizing the complexities of interactions. The fifth, and a key value in the context of the COVID-19 pandemic, is fostering respect for people who perform public services. Liberalism and utilitarianism create combative ethical discourse around those qualities, while contractualism could elevate shared public values. While liberal democracies arguably have the makings of those qualities, public engagement must be fostered at an intellectual level to promote cohesion. Another important aspect to consider is the question of what a framework should aim to answer. In Building an Ethical Framework for COVID-19 Resource Allocation: The How and Why, Angus Dawson addresses the goal of a framework, especially at the time of a pandemic.[39] He stresses the importance of context in constructing a framework and urges to engage with a diverse group of people. Value-laden normative approaches such as the libertarian and utilitarian frameworks provide less opportunity for different stakeholder claims. Dawson then argues that explicit discussions provide more clarity and help policy makers better understand the role of context in shaping a framework. Dawson asserts that a frame chosen sympathetically can help the public better appreciate the moral content involved in deliberation, whereas aiming for goals such as liberty and utility is a distraction from the workings of reality. In evaluating stakeholders, those with lower incomes often are unable to work remotely. They face a greater risk of COVID-19 due to workplace exposure as well as commutes and living conditions.[40] Although a mandatory vaccination policy has the clearly defined goal of achieving herd immunity, ensuring distributive and procedural justice should not be viewed as being mutually exclusive. CONCLUSION Societal change relies on justifiable goals, policies, and a multitude of viewpoints. As such, a contractualist approach best accommodates a multitude of views of what we owe each other. Moving forward, if pandemic-type circumstances do disseminate within the constructs of our society, public policy should further consider contractualist approaches as a healthy, inclusive means. - [1] Luyten, Jeroen. "Mutual Moral Obligations in the Prevention of Infectious Diseases." In Justice, Luck & Responsibility in Health Care, pp. 85-100. Springer, Dordrecht, 2013. [2] Council, Nuffield Bioethics. "Public Health: Ethical Issues." Nuffield Council on Bioethics (2007) [3] Dawson, Angus J. "Snakes and Ladders: State Interventions and the Place of Liberty in Public Health Policy." Journal of Medical Ethics 42, no. 8 (2016): 510-513. [4] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011. [5] Dawson, Angus. "Resetting the Parameters." Public Health Ethics (2011): 1-19. [6] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011. [7] Dawson, Angus J. "Snakes and Ladders: State Interventions and the Place of Liberty in Public Health Policy." Journal Of Medical Ethics 42, no. 8 (2016): 510-513. [8] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011. [9] Savulescu, Julian. "Good Reasons to Vaccinate: Mandatory or Payment for Risk?." Journal of Medical Ethics 47, no. 2 (2021): 78-85. [10] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011. [11] Dawson, Angus. "Resetting the Parameters." Public Health Ethics (2011): 1-19. [12] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632. [13] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632. [14] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632. [15] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632. [16] Luyten, Jeroen, and Yvonne Denier. "Explicit Cost-Effectiveness Thresholds in Health Care: A Kaleidoscope." Social Justice Research 32, no. 2 (2019): 155-171. [17] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632. [18] Luyten, Jeroen, Huseyin Naci, and Martin Knapp. "Economic Evaluation of Mental Health Interventions: An Introduction to Cost-Utility Analysis." Evidence-Based Mental Health 19, no. 2 (2016): 49-53. [19] Luyten, Jeroen, and Yvonne Denier. "Explicit Cost-Effectiveness Thresholds in Health Care: A Kaleidoscope." Social Justice Research 32, no. 2 (2019): 155-171. [20] (Luyten and Denier, 2019, p.10) [21] Luyten, Jeroen, Huseyin Naci, and Martin Knapp. "Economic Evaluation of Mental Health Interventions: An Introduction to Cost-Utility Analysis." Evidence-Based Mental Health 19, no. 2 (2016): 49-53. [22] Savulescu, Julian, Ingmar Persson, and Dominic Wilkinson. "Utilitarianism and the Pandemic." Bioethics 34, no. 6 (2020): 620-632. [23] Savulescu, et al. [24] Mill, John Stuart. "Utilitarianism, ed. George Sher." (2001). [25] Scanlon, Thomas M. "Précis of" What We Owe to Each Other"." (2003): 159-161. [26] Scanlon 2003 p.159) [27] Verweij, Marcel. "Obligatory precautions against infection." Bioethics 19, no. 4 (2005): 323-335. [28] Scanlon, Thomas M. "Précis of" What We Owe to Each Other"." (2003): 159-161. [29] Verweij, Marcel. "Obligatory precautions against infection." Bioethics 19, no. 4 (2005): 323-335. [30] Verweij, Marcel. "Obligatory precautions against infection." Bioethics 19, no. 4 (2005): 323-335. [31] Verweij, Marcel. "Obligatory precautions against infection." Bioethics 19, no. 4 (2005): 323-335. [32] Financial Times, 2021, “Covid is the Enemy, Not the Government” Sunil Jain April 26 Accessed 14 May 2021 https://www.financialexpress.com/opinion/covid-is-the-enemy-not-the-government/2240340/ [33] Dawson, Angus, ed. Public Health Ethics: Key Concepts and Issues in Policy and Practice. Cambridge University Press, 2011. [34] Verweij, Marcel. "Obligatory Precautions Against Infection." Bioethics 19, no. 4 (2005): 323-335. [35] Verweij, Marcel. "Obligatory Precautions Against Infection." Bioethics 19, no. 4 (2005): 323-335. [36] Verweij, Marcel. "Obligatory Precautions Against Infection." Bioethics 19, no. 4 (2005): 323-335. [37] Solomon, Mildred Z. "Realizing Bioethics' Goals in Practice: Ten Ways “Is” Can Help “Ought”." Hastings Center Report 35, no. 4 (2005): 40-47. [38] Healey, Patsy. "Re-enchanting Democracy as a Mode of Governance." In Connections, pp. 61-78. Routledge, 2017. [39] Dawson, Angus. "Building an Ethics Framework for COVID-19 Resource Allocation: The How and the Why." Journal of Bioethical Inquiry 17, no. 4 (2020): 757-760. [40] Schmidt, Harald, Lawrence O. Gostin, and Michelle A. Williams. "Is it Lawful and Ethical to Prioritize Racial Minorities for COVID-19 Vaccines?." Jama 324, no. 20 (2020): 2023-2024.

Photo by Diana Polekhina on Unsplash ABSTRACT With the increasing legalization of MAiD across the world, the question of whether psychiatric patients with refractory mental illness should have access to this health service is a topic of ethical debate. Even so, with present-day autonomy encouragement, and the right to die, a psychiatric diagnosis should never automatically preclude a patient from making decisions about their treatment, including the use of MAiD. INTRODUCTION Likely, no matter where we live in the world, we have similar wants: to be healthy, to be happy, to be in a community, to make our own decisions about our lives. The first and last of these wants are the primary concerns of medicine. Diseases are treated, suffering is alleviated, chronic illnesses are managed – to the extent possible. Along the way, patient autonomy is encouraged. Perhaps the greatest manifestation of this autonomy is evidenced in the increasing availability of Physician-Assisted Suicide or Medical Aid-in-Dying (MAiD). With important nuances, the criteria that patients must meet to participate in MAiD are generally similar: a patient must be over the age of 18, able to state a voluntary desire to end their own life, and two independent physicians must verify their decision-making capacity. Yet, clinical criteria for accessing this option differ. In U.S. jurisdictions where MAiD is legal, patients must have a terminal illness with a 6-month prognosis.[1] In Holland and Belgium, the presence of “intractable pain” is sufficient.[2] With the increasing legalization of MAiD across the world, the question of whether psychiatric patients suffering from refractory mental illness should have access to this means of relieving suffering is under continual debate. The ethical implications of denying autonomous decision-making to psychiatric patients at the end of life will be discussed – along with suggestions for clinical practice. l. Medical Aid-in-Dying and the Psychiatric Patient There are three main arguments against allowing a patient with psychiatric suffering to pursue MAiD. The first is that patients with severe mental illness may have impaired decision-making capacity. This impaired capacity generally encompasses the following four criteria: the ability to express a choice, the ability to understand the information presented, the ability to appreciate the “medical consequences of the situation,” and the ability to engage with different choices of treatment.[3] These criteria are impaired to varying degrees across the spectrum of mental illnesses. For instance, about 50 percent of patients with schizophrenia hospitalized for an acute episode displayed at least one element of impaired capacity, compared with 20-25 percent of those admitted with an acute depressive episode. In contrast, depression treated on an outpatient basis may not be associated with any impairment in capacity.[4] The second argument against allowing a patient with psychiatric suffering to pursue MAiD is that suicidality itself can manifest as a common symptom of psychiatric disorders (including major depressive disorder). In this context, a patient with severe mental illness who has requested MAiD, following appropriate treatment, may in fact no longer wish to die. The fear of wrongly fulfilling a MAiD request in this context alienates the notion of liberally applying MAiD to the psychiatric population. A literature review found that between 8 percent and 47 percent of patients in the Netherlands and Oregon who requested MAiD presented with depression, while 2-17 percent of those who pursued MAiD to completion had “depressive symptoms.” In the Netherlands, patients with depression were significantly less likely to be granted euthanasia/MAiD requests.[5] Providers are rightfully afraid of making a mistake that will cost a life. Kious and Battin phrase the dilemma simply: “When is it worse that someone die, whether from suicide or with physician assistance, who could have been helped, and when is it worse that someone whose suffering could only be alleviated by death continue to suffer?”[6] It is doubtful that this question will ever have a sufficient answer. The third argument, that Calkins and Swetz fervently pose, claims that “allowing the psychiatrically ill to participate in [MAiD] will compromise the patient-clinician relationship and the relationship of medicine with the public as a whole… fundamentally alter[ing] the clinician’s role as healer and trusted advisor.”[7] This argument stems from western medicine’s bias of preserving life at whatever cost, the idea being that any deviation from this goal constitutes an abandonment of the patient. Calkins and Swetz’s suggestion that all patients with severe, persistent mental illness who might request MAiD do so inappropriately vastly overestimate the capacity of current psychotropic pharmacology to alleviate pain and suffering. There remain patients who have diligently run the gamut of available treatment options and remain debilitated by their disease. Allowing for participation in MAiD can instead be a testament to the strength of a patient-clinician relationship: that this patient, after presenting the topic of MAiD to their “healer and trusted advisor,” is met with a provider who willingly and carefully listens to their reasons for requesting this option, rather than rejecting the notion out of hand. If deemed appropriate, and after careful fulfillment of the remaining MAiD criteria, the relationship can then shift towards an end-of-life alliance – therapeutic in and of itself, one in which the goal is not further treatment but a peaceful end. However, attitudes about the appropriateness of MAiD for patients with severe mental illness differ, even among psychiatrists. In a survey of 457 psychiatrists in Switzerland – one of the few countries in which MAiD can be granted “on the basis of a primary psychiatric diagnosis,” 29.3 percent of respondents indicated some degree of support for the availability of MAiD to patients with severe and persistent mental illness – an acceptance rate that parallels that of medical providers.[8] Among a profession dedicated to preserving life, there remains much (reasonable) caution about hastening its end. ll. The Psychiatric Advance Directive The ambiguity over whether patients with psychiatric illnesses should be allowed to make their own treatment decisions is not limited to the end of life. For patients with predominantly medical conditions who no longer have the capacity to make decisions about their care (for instance, patients with advanced dementia), clinicians can defer to previously stated wishes as expressed in an advance directive or per the discretion of a healthcare proxy. This deferred decision-making is sometimes referred to as substituted judgment.[9] As a correlate, patients suffering from mental illness can complete a Psychiatric Advance Directive (PAD) to indicate what treatments they would or would not want should they lose decisional capacity. These are often informed by prior, traumatic hospitalizations (for instance, a patient may request not to undergo involuntary electroconvulsive shock therapy, or receive specific antipsychotics, or may decline all psychiatric management). Yet, in contrast to advance directives guiding medical treatment, PADs are frequently (and legally) overridden if they violate “accepted clinical standards.”[10] At their discretion, physicians can override any part or all of a patient’s PAD if it violates what they deem to be acceptable care. Rather than a “let-the-patient-decide” law, the actual influence of PADs on clinical management is often minimal – shrinking its effect to a “let the doctor decide whether the patient gets to decide” law.[11] For example, Pennsylvania’s PAD statute (Act 194) specifies three instances in which physicians can override a patient’s directive. First, a physician maintains the right to involuntarily admit a patient under civil commitment law. Second, a physician may override any part of a patient’s PAD so long as they make “every reasonable effort” to have the patient transferred to a provider willing to adhere to the patient’s request. Third, the act protects any physician who violates a patient’s PAD request from “criminal or civil liability or discipline[e] for unprofessional conduct” who is deemed to have acted in “good faith” based on accepted clinical guidelines.[12] In Pennsylvania’s fairly standard PAD legislation, the physician is virtually untouchable. North Carolina’s “Advance Instruction for Mental Health Treatment” documentation explicitly communicates its limitations to the patient: the opening paragraph states, “Your instructions may be overridden if you are being held in accordance with civil commitment law.”[13] Of course, neither is it sustainable to adhere to all PAD requests. Consider the case of Hargrave v. Vermont. The Second Circuit Court of Appeals upheld the durable power of attorney (DPOA) of Nancy Hargrave (a patient with schizophrenia who was civilly committed) to refuse treatment. As Applebaum notes, “If large numbers of patients were to complete advance directives such as Nancy Hargrave’s, declining all medication, hospitals might well begin to fill with patients whom they could neither treat nor discharge.”[14] Notably, this case is an exception rather than the rule. Broad legislation emulating Hargrave will not act towards the betterment of all patients with severe mental illness. But, in the conversation on the applicability of MAiD for psychiatric patients, it is worth noting how frequently and readily these patients’ wishes are overlooked, even when they have been expressed and properly documented in a state of decisional capacity (as must be the case when completing a Psychiatric Advance Directive). lll. The Way Forward While those with mental illness deserve both fierce protection and robust mental health treatment, they also have a right to define what quality of life is acceptable. When determining the point at which treatment of a psychiatric illness becomes futile – and thus the option of pursuing MAiD more readily permissible – the concept of “qualitative futility” is particularly generative. Focus turns towards a patient’s first-person experience of illness and an understanding of their “subjective view about the quality of an outcome.”[15] This perspective shifts away from the statistical probability that a certain treatment will succeed and instead incorporates the lived reality of a patient’s illness narrative. For example, in the World Health Organization’s published report on the treatment of cancer pain, the phrase “total pain” identifies the physical and non-physical components of suffering, including “the noxious physical stimulus and also psychological, spiritual, social, and financial factors.”[16] For severely ill patients with treatment-refractory mental illness, an understanding of “qualitative futility” and “total pain” could be the most humane way to approach who should and should not qualify for MAiD. In one take on how patients with mental illness have the right to define what consists of an acceptable quality of life, Kious and Battin posit that if a patient’s decision to pursue MAiD is voluntary and if the patient possesses decision-making capacity, their request should be granted “irrespective of whether their underlying medical diagnosis is physical or mental, terminal or nonterminal.”[17] While this option should, of course, be withheld from patients suffering from an acute exacerbation in which the patient may not achieve decisional capacity, it is nevertheless true that psychiatric illness, even in severe cases, is often episodic, undergoing periods of remission when a patient may be symptom-free.[18] During these periods of lucidity, the patient’s perception of quality of life should be examined with great care. Another option offered by Kious and Battin to identify psychiatric patients who may be appropriately pursuing MAiD is to create two “metric[s] for suffering” – one for physical and one for mental illnesses. For psychiatric patients who wish to end their lives, this establishes a threshold above which suffering becomes “unbearable,” opening the door for a legitimate conversation about MAiD between patient and physician (should the patient request it). Suffering below this threshold would remain grounds for involuntary admission to an inpatient facility.[19] The question remains: how do we gauge severe enough suffering to die and suffering that is not? In exploring this question, Zhong et al.’s understanding that a person with mental illness pursuing MAiD must be evaluated differently proves valuable. The authors suggest that rather than focusing on “point capacity” (the ability to make a specific decision), an evaluation of “global capacity” should instead be conducted - a style of evaluation that is interested in “fully contextualiz[ing]” the patient’s choice to pursue MAiD. This requires asking not only about medical and psychiatric history but also family and relationship history, trauma history, education and employment history, and includes a rigorous collection of collateral information from family and friends who can confirm the patient’s wishes.[20] An additional benefit of evaluating for “global capacity” should the choice of MAiD be followed to completion is the illumination, no matter how slight, that might be provided to relatives and friends. This prior justification for, and understanding of, the patient’s decision might dull the sharpness of loss for family and friends – healing insight that may be inaccessible in the case of unassisted suicide. While Kious and Battin express concern that it is “deeply unclear” how to measure the dimensions of suffering given that “we cannot wholly trust first-person reports,” these narratives nonetheless form the substrate of psychiatry and serve as the diagnostic tool of most gravitas available to providers of mental illness.[21] They must be trusted. Or, as the old medical adage goes, they can be trusted and confirmed. It is no accident that in the WHO’s “Cancer Pain Relief” manual, the first step of pain assessment is to “believe the patient’s complaint of pain.”[22] The lived experience of a patient with severe, refractory mental illness can challenge physician hesitation about the appropriateness of MAiD. In the previously cited study in which 29.3 percent of Swiss psychiatrists reported general support for the availability of MAiD in cases of refractory mental illness, the percentage curiously swelled when presented with three clinical vignettes (in each, the patient is stated to have decision-making capacity to “refuse further treatment”). In the case of a 37-year old female with a 26-year history of anorexia nervosa, ten prior hospitalizations, a weight of 52 pounds, general muscle weakness, and low bone density, who no longer wishes to undergo force-feeds, 35.4 percent of respondents indicated that they would support her choice of MAiD.[23] In the case of a 33-year old male with a 16-year history of schizophrenia, who has failed numerous trials of anti-psychotic regiments and electroconvulsive shock therapy, who has “never been free from positive or negative symptoms,” and whose persisting illness has left him severely isolated, 32.1 percent indicated that they would support his choice of MAiD. And in the case of a 40-year-old male with persistent suicidal ideation for 20 years, whose symptoms have been refractory to numerous trials of anti-depressants, anti-psychotics, mood stabilizers, combination therapy, psychotherapy, and electroconvulsive shock therapy, who plans to commit suicide “in the near future,” 31.4 percent of respondents indicated that they would support his choice of MAiD. With generous and nuanced attention to a patient’s “total pain,” following careful evaluation of their “global capacity,” and after a thorough review of all treatment trials and any available therapeutic options yet un-tried (assessing “psychiatric futility”), those who are suffering from severe, refractory mental illness should be granted similar access to MAiD as patients suffering from cancer, ALS, and other organic causes of disease. We cannot adequately police the “badness of suffering.”[24] CONCLUSION In summary, a psychiatric diagnosis should never automatically preclude a patient from making decisions about their treatment, including deciding to end one’s own life with the help of a licensed provider. Medical Aid-in-Dying is associated with a safe, certain, and painless death. In the circumstances where it would be applicable, it serves as a less fraught option than unassisted suicide. We owe anyone who is ceaselessly suffering that much. Or, at the very least, we owe this equally fraught topic an honest conversation. [1] Calkins, Bethany C., and Keith M. Swetz. “Physician Aid-in-Dying and Suicide Prevention in Psychiatry: A Moral Imperative Over a Crisis.” The American Journal of Bioethics, vol. 19, no. 10, 2019, pp. 68–70, doi:10.1080/15265161.2019.1653398. [2] Montanari Vergallo, Gianluca et al. “Euthanasia and physician-assisted suicide for patients with depression: thought-provoking remarks.” Rivista di psichiatria vol. 55,2 (2020): 119-128. doi:10.1708/3333.33027 [3] Appelbaum, Paul S. “Assessment of Patients’ Competence to Consent to Treatment.” New England Journal of Medicine, vol. 357, no. 18, 2007, pp. 1834–40, doi:10.1056/nejmcp074045. [4] Appelbaum, Paul S. “Assessment of Patients’ Competence to Consent to Treatment,” 1834–40. [5] Levene, Ilana, and Michael Parker. “Prevalence of Depression in Granted and Refused Requests for Euthanasia and Assisted Suicide: A Systematic Review.” Journal of Medical Ethics vol. 37,4 (2011): 205-11. doi:10.1136/jme.2010.039057 [6] Levene, Ilana, and Michael Parker. “Prevalence of Depression in Granted and Refused Requests for Euthanasia ...” 205-11. [7] Calkins, Bethany C., and Keith M. Swetz. “Physician Aid-in-Dying and Suicide Prevention in Psychiatry,” 68–70. [8] Hodel, Martina A et al. “Attitudes Toward Assisted Suicide Requests in the Context of Severe and Persistent Mental Illness: A Survey of Psychiatrists in Switzerland.” Palliative & Supportive Care vol. 17,6 (2019): 621-627. doi:10.1017/S1478951519000233 [9] Appel, Jacob M. “Trial by Triad: Substituted Judgment, Mental Illness and the Right to Die.” Journal of Medical Ethics, 2021, pp. 1–4. doi:10.1136/medethics-2020-107154. [10] Swanson, Jeffrey W et al. “Superseding Psychiatric Advance Directives: Ethical and Legal Considerations.” The Journal of the American Academy of Psychiatry and the Law vol. 34,3 (2006): 385-94. [11] Swanson, Jeffrey W et al. “Superseding Psychiatric Advance Directives,” 385-94. [12] Ibid [13] “Advance Directive for Mental Health Treatment." NC Secretary of State. Web. 13 July 2021. <https://www.sosnc.gov/forms/by_title/_advance_healthcare_directives>. [14] Appelbaum, Paul S. “Law & Psychiatry: Psychiatric Advance Directives and the Treatment of Committed Patients.” Psychiatric Services (Washington, D.C.) vol. 55, no. 7, 2004, pp. 751–763. doi:10.1176/appi.ps.55.7.751 [15] Zhong, Rocksheng, et al. “Physician Aid-in-Dying for Individuals with Serious Mental Illness: Clarifying Decision-Making Capacity and Psychiatric Futility.” The American Journal of Bioethics, vol. 19, no. 10, 2019, pp. 61–63, doi:10.1080/15265161.2019.1654018. [16] World Health Organization. (‎1986)‎. Cancer Pain Relief. World Health Organization. https://apps.who.int/iris/handle/10665/43944 [17] Kious, Brent M., and Margaret (Peggy) Battin. “Physician Aid-in-Dying and Suicide Prevention in Psychiatry: A Moral Crisis?” The American Journal of Bioethics, vol. 19, no. 10, 2019, pp. 29–39, doi:10.1080/15265161.2019.1653397. [18] Kious, Brent M., and Margaret (Peggy) Battin. “Physician Aid-in-Dying,” 29–39. [19] Ibid [20] Appelbaum, Paul S. “Law & Psychiatry,” 751–763. [21] Kious, Brent M., and Margaret (Peggy) Battin. “Physician Aid-in-Dying,” 29–39. [22] World Health Organization, Cancer Pain Relief. [23] Hodel, Martina A et al. “Attitudes Toward Assisted Suicide Requests,” 621-627. [24] Kious, Brent M., and Margaret (Peggy) Battin. “Physician Aid-in-Dying,” 29–39.

We ask you now, reader, to put your mind, as a citizen of the Australian Commonwealth, to the facts presented in these pages. We ask you to study the problem, in the way that we present the case, from the Aborigines’ point of view. We do not ask for your charity; we do not ask you to study us as scientific-freaks. Above all, we do not ask for your “protection”. No, thanks! We have had 150 years of that! We ask only for justice, decency, and fair play. (Patten and Ferguson 3-4) Jack Patten and William Ferguson’s above declaration on “Plain Speaking” in Aborigines Claim Citizenship Rights! A Statement of the Case for the Aborigines Progressive Association (1938), outlining Aboriginal Australians view of colonisation and the call for Aboriginal self-determinacy, will be my guiding framework in writing this paper. I ask you to study the problem, as it is presented, from the viewpoint of an Indigenous woman who seeks to understand how “sorry” has been uttered in political domains as a word divorced from the moral freight attached to a history of “degrading, humiliating and exterminating” Aboriginal Australians (Patten and Ferguson 11). I wish to argue that the Opposition leader’s utterance of “sorry” in his 13 February 2008 “We Are Sorry – Address to Parliament” was an indicator of the insidious ways in which colonisation has treated Aboriginal Australians as less than, not equal to, white Australians and to examine the ways in which this particular utterance of the word “sorry” is built on longstanding colonial frameworks that position ‘the Aborigine’ as peripheral in the representation of a national identity – a national identity that, as shown by the transcript of the apology, continues to romanticise settler values and ignore Indigenous rights. Nelson’s address tries to disassociate the word “sorry” from any moral attachment. The basis of his address is on constructing a national identity where all injustices are equal. In offering this apology, let us not create one injustice in our attempts to address another. (Nelson) All sorrys are equal, but some are more equal than others. Listening to Nelson’s address, words resembling those of Orwell’s ran through my head. The word “sorry” in relation to Indigenous Australians has taken on cultural, political, educational and economic proportions. The previous government’s refusal to utter the word was attached to the ways in which formations of rhetorically self-sufficient arguments of practicality, equality and justice “functioned to sustain and legitimate existing inequalities between Indigenous and non-Indigenous peoples in Australia” (Augoustinos, LeCouteur and Soyland 105). How then, I wondered as I nervously waited for Nelson to begin apologising, would he transform this inherited collective discursive practice of legitimised racism that upheld mainstream Australia’s social reality? The need for an apology, and the history of political refusal to give it, is not a simple classification of one event, one moment in history. The ‘act’ of removing children is not a singular, one-off event. The need to do, the justification and rationalisation of the doing and what that means now, the having done, as well as the impact on those that were left behind, those that were taken, those that were born after, are all bound up in this particular “sorry”. Given that reluctance of the previous government to admit injustices were done and still exist, this utterance of the word “sorry” from the leader of the opposition precariously sat between freely offering it and reluctantly giving it. The above quote from Nelson, and its central concern of not performing any injustice towards mainstream Australia (“let us not” [my italics]) very definitely defines this sorry in relation to one particular injustice (the removing of Indigenous children) which therefore ignores the surrounding and complicit colonialist and racist attitudes, policies and practices that both institutionalised and perpetuated racism against Australia’s Indigenous peoples. This comment also clearly articulates the opposition’s concern that mainstream Australia not be offended by this act of offering the word “sorry”. Nelson’s address and the ways that it constructs what this “sorry” is for, what it isn’t for, and who it is for, continues to uphold and legitimate existing inequalities between Indigenous and non-Indigenous Australians. From the very start of Nelson’s “We Are Sorry – Address to Parliament”, two specific clarifications were emphasised: the “sorry” was directed at a limited time period in history; and that there is an ‘us’ and a ‘them’. Nelson defines this distinction: “two cultures; one ancient, proud and celebrating its deep bond with this land for some 50,000 years. The other, no less proud, arrived here with little more than visionary hope deeply rooted in gritty determination to build an Australian nation.” This cultural division maintains colonising discourses that define and label, legitimate and exclude groups and communities. It draws from the binary oppositions of self and other, white and black, civilised and primitive. It maintains a divide between the two predominant ideas of history that this country struggles with and it silences those in that space in between, ignoring for example, the effects of colonisation and miscegenation in blurring the lines between ‘primitive’ and ‘civilised’. Although acknowledging that Indigenous Australians inhabited this land for a good few thousand decades before the proud, gritty, determined visionaries of a couple of hundred years ago, the “sorry” that is to be uttered is only in relation to “the first seven decades of the 20th century”. Nelson establishes from the outset that any forthcoming apology, on behalf of “us” – read as non-Indigenous Anglo-Australians – in reference to ‘them’ – “those Aboriginal people forcibly removed” – is only valid for the “period within which these events occurred [which] was one that defined and shaped Australia”. My reading of this sectioning of a period in Australia’s history is that while recognising that certain colonising actions were unjust, specifically in this instance the removal of Indigenous children, this period of time is also seen as influential and significant to the growth of the country. What this does is to allow the important colonial enterprise to subsume the unjust actions by the colonisers by other important colonial actions. Explicit in Nelson’s address is that this particular time frame saw the nation of Australia reach the heights of achievements and is a triumphant period – an approach which extends beyond taking the highs with the lows, and the good with the bad, towards overshadowing any minor ‘unfortunate’ mistakes that might have been made, ‘occasionally’, along the way. Throughout the address, there are continual reminders to the listeners that the “us” should not be placed at a disadvantage in the act of saying “sorry”: to do so would be to create injustice, whereas this “sorry” is strictly about attempting to “address another”. By sectioning off a specific period in the history of colonised Australia, the assumption is that all that happened before 1910 and all that happened after 1970 are “sorry” free. This not only ignores the lead up to the official policy of removal, how it was sanctioned and the aftermath of removal as outlined in The Bringing Them Home Report (1997); it also prevents Indigenous concepts of time from playing a legitimate and recognised role in the construct of both history and society. Aboriginal time is cyclical and moves around important events: those events that are most significant to an individual are held closer than those that are insignificant or mundane. Aleksendar Janca and Clothilde Bullen state that “time is perceived in relation to the socially sanctioned importance of events and is most often identified by stages in life or historic relevance of events” (41). The speech attempts to distinguish between moments and acts in history: firmly placing the act of removing children in a past society and as only one act of injustice amongst many acts of triumph. “Our generation does not own these actions, nor should it feel guilt for what was done in many, but not all cases, with the best of intentions” (Nelson). What was done is still being felt by Indigenous Australians today. And by differentiating between those that committed these actions and “our generation”, the address relies on a linear idea of time, to distance any wrongdoing from present day white Australians. What I struggle with here is that those wrongdoings continue to be felt according to Indigenous concepts of time and therefore these acts are not in a far away past but very much felt in the present. The need to not own these actions further entrenches the idea of separateness between Indigenous Australia and non-Indigenous Australia. The fear of being guilty or at blame evokes notions of wrong and right and this address is at pains not to do that – not to lay blame or evoke shame. Nelson’s address is relying on a national identity that has historically silenced and marginalised Indigenous Australians. If there is no blame to be accepted, if there is no attached shame to be acknowledged (“great pride, but occasionally shame” (Nelson)) and dealt with, then national identity is implicitly one of “discovery”, peaceful settlement and progress. Where are the Aboriginal perspectives of history in this idea of a national identity – then and now? And does this mean that colonialism happened and is now over? State and territory actions upon, against and in exclusion of Indigenous Australians are not actions that can be positioned as past discriminations; they continue today and are a direct result of those that preceded them. Throughout his address, Nelson emphasises the progressiveness of “today” and how that owes its success to the “past”: “In doing so, we reach from within ourselves to our past, those whose lives connect us to it and in deep understanding of its importance to our future”. By relying on a dichotomous approach – us and them, white and black, past and present – Nelson emphasises the distance between this generation of Australia and any momentary unjust actions in the past. The belief is that time moves on – away from the past and towards the future. That advancement, progression and civilisation are linear movements, all heading towards a more enlightened state. “We will be at our best today – and every day – if we pause to place ourselves in the shoes of others, imbued with the imaginative capacity to see this issue through their eyes with decency and respect”. But where is the recognition that today’s experiences, the results of what has been created by the past, are also attached to the need to offer an apology? Nelson’s “we” (Anglo-Australians) are being asked to stop and think about how “they” (Aborigines) might see things differently to the mainstream norm. The implication here also is that “they” – members of the Stolen Generations – must be prepared to understand the position white Australia is coming from, and acknowledge the good that white Australia has achieved. Anglo-Australian pride and achievement is reinforced throughout the address as the basis on which our national identity is understood. Ignoring its exclusion and silencing of the Indigenous Australians to whom his “sorry” is directed, Nelson perpetuates this ideology here in his address: “In brutally harsh conditions, from the small number of early British settlers our non Indigenous ancestors have given us a nation the envy of any in the world”. This gift of a nation where there was none before disregards the acts of invasion, segregation, protection and assimilation that characterise the colonisation of this nation. It also reverts to romanticised settler notions of triumph over great adversities – a notion that could just as easily be attached to Indigenous Australians yet Nelson specifically addresses “our non Indigenous ancestors”. He does add “But Aboriginal Australians made involuntary sacrifices, different but no less important, to make possible the economic and social development of our modern [my emphasis] Australia.” Indigenous Australians certainly made voluntary sacrifices, similar to and different from those made by non Indigenous Australians (Indigenous Australians also went to both World Wars and fought for this nation) and a great deal of “our modern” country’s economic success was achieved on the backs of Blackfellas (Taylor 9). But “involuntary sacrifices” is surely a contradiction in terms, either intellectually shoddy or breathtakingly disingenuous. To make a sacrifice is to do it voluntarily, to give something up for a greater good. “Involuntary sacrifices”, like “collateral damage” and other calculatedly cold-blooded euphemisms, conveniently covers up the question of who was doing what to whom – of who was sacrificed, and by whom. In the attempt to construct a basis of equal contribution between Indigenous and non-Indigenous, as well as equal acts of struggle and triumphing, Nelson’s account of history and nation building draws from the positioning of the oppressors but tries to suppress any notion of racial oppression. It maintains the separateness of Indigenous experiences of colonisation from the colonisers themselves. His reiteration that these occasional acts of unjustness came from benevolent and charitable white Australians privileges non-Indigenous ways of knowing and doing over Indigenous ones and attempts to present them as untainted and innate as opposed to repressive, discriminatory and racist. We honour those in our past who have suffered and all those who have made sacrifices for us by the way we live our lives and shape our nation. Today we recommit to do so – as one people. (Nelson) The political need to identify as “one people” drives assimilation policies (the attitude at the very heart of removing Aboriginal children on the basis that they were Aboriginal and needed to be absorbed into one society of whites). By honouring everyone, and therefore taking the focus off any act of unjustness by non-Indigenous peoples on Indigenous peoples, Nelson’s narrative again upholds an idea of contemporary national identity that has not only romanticised the past but ignores the inequalities of the present day. He spends a good few hundred words reminding his listeners that white Australia deserves to maintain its hard won position. And there is no doubt he is talking to white Australia – his focus is on Western constructs of patriotism and success. He reverts to settler/colonial discourse to uphold ideas of equity and access: These generations considered their responsibilities to their country and one another more important than their rights. They did not buy something until they had saved up for it and values were always more important than value. Living in considerably more difficult times, they had dreams for our nation but little money. Theirs was a mesh of values enshrined in God, King and Country and the belief in something greater than yourself. Neglectful indifference to all they achieved while seeing their actions in the separations only, through the values of our comfortable, modern Australia, will be to diminish ourselves. In “the separations only…” highlights Nelson’s colonial logic, which compartmentalises time, space, people and events and tries to disconnect one colonial act from another. The ideology, attitudes and policies that allowed the taking of Indigenous children were not separate from all other colonial and colonising acts and processes. The desire for a White Australia, a clear cut policy which was in existence at the same time as protection, removal and assimilation policies, cannot be disassociated from either the taking of children or the creation of this “comfortable, modern Australia” today. “Neglectful indifference to all they achieved” could aptly be applied to Indigenous peoples throughout Australian history – pre and post invasion. Where is the active acknowledgment of the denial of Indigenous rights so that “these generations [of non-Indigenous Australians could] consider their responsibilities to their country and one another more important than their rights”? Nelson adheres to the colonialist national narrative to focus on the “positive”, which Patrick Wolfe has argued in his critique of settler colonialism, is an attempt to mask disruptive moments that reveal the scope of state and national power over Aboriginal Australians (33). After consistently reinforcing the colonial/settler narrative, Nelson’s address moves on to insert Indigenous Australians into a well-defined and confined space within a specific chapter of that narrative. His perfunctory overview of the first seven decades of the 20th century alludes to Protection Boards and Reserves, assimilation policies and Christianisation, all underlined with white benevolence. Having established the innocent, inherently humane and decent motivations of “white families”, he resorts to appropriating Indigenous people’s stories and experiences. In the retelling of these stories, two prominent themes in Nelson’s text become apparent. White fellas were only trying to help the poor Blackfella back then, and one need only glance at Aboriginal communities today to see that white fellas are only trying to help the poor Blackfella again. It is reasonably argued that removal from squalor led to better lives – children fed, housed and educated for an adult world of [sic] which they could not have imagined. However, from my life as a family doctor and knowing the impact of my own father’s removal from his unmarried teenaged mother, not knowing who you are is the source of deep, scarring sorrows the real meaning of which can be known only to those who have endured it. No one should bring a sense of moral superiority to this debate in seeking to diminish the view that good was being sought to be done. (Nelson) A sense of moral superiority is what motivates colonisation: it is what motivated the enforced removal of children. The reference to “removal from squalor” is somewhat reminiscent of the 1909 Aborigines Protection Act. Act No. 25, 1909, section 11(1) which states: The board may, in accordance with and subject to the provisions of the Apprentices Act, 1901, by indenture bind or cause to be bound the child of any aborigine, or the neglected child of any person apparently having an admixture of aboriginal blood in his veins, to be apprenticed to any master, and may collect and institute proceedings for the recovery of any wages payable under such indenture, and may expend the same as the board may think fit in the interest of the child. Every child so apprenticed shall be under the supervision of the board, or of such person that may be authorised in that behalf by the regulations. (144) Neglect was often defined as simply being Aboriginal. The representation that being removed would lead to a better life relies on Western attitudes about society and culture. It dismisses any notion of Indigenous rights to be Indigenous and defines a better life according to how white society views it. Throughout most of the 1900s, Aboriginal children that were removed to experience this better life were trained in positions of servants. Nelson’s inclusion of his own personal experience as a non Indigenous Australian who has experienced loss and sorrow sustains his textual purpose to reduce human experiences to a common ground, an equal footing – to make all injustices equal. And he finishes the paragraph off with the subtle reminder that this “sorry” is only for “those” Aboriginal Australians that were removed in the first seven decades of last century. After retelling the experience of one Indigenous person as told to the National Inquiry into the Separation of Aboriginal and Torres Strait Islander Children from their Families, he retells the experience of an Indigenous woman as told to a non-Indigenous man. The appropriate protocols concerning the re-using of Indigenous knowledge and intellectual copyright appeared to be absent in this address. Not only does the individual remain unacknowledged but the potential for misappropriating Indigenous experiences for non Indigenous purposes is apparent. The insertion of the story dismisses the importance of the original act of telling, and the significance of the unspeakable through decades of silence. Felman presents the complexities of the survivor’s tale: “the victim’s story has to overcome not just the silence of the dead but the indelible coercive power of the oppressor’s terrifying, brutal silencing of the surviving, and the inherent speechless silence of the living in the face of an unthinkable, unknowable, ungraspable event” (227). In telling this story Nelson unravelled the foundation of equality he had attempted to resurrect. And his indication towards current happenings in the Northern Territory only served to further highlight the inequities that Indigenous peoples continue to face, resist and surpass. Nelson’s statement that “separation was then, and remains today, a painful but necessary part of public policy in the protection of children” is another reminder of the “indelible coercive power of the oppressor’s terrifying” potential to repeat history. The final unmasking of the hypocritical and contested nature of Nelson’s national ideology and narrative is in his telling of the “facts” – the statistics concerning Indigenous life expectancy, Indigenous infant mortality rates, “diabetes, kidney disease, hospitalisation of women from assault, imprisonment, overcrowding, educational underperformance and unemployment”. These statistics are a result not of what Nelson terms “existential aimlessness” (immediately preceding paragraph) but of colonisation – theft of land, oppression, abuse, discrimination, and lack of any rights whether citizenship or Aboriginal. These contemporary experiences of Indigenous peoples are the direct linear result of the last two hundred years of white nation building. The address is concluded with mention of Neville Bonner, portrayed here as the perfect example of what reading, writing, expressing yourself with dignity and treating people with decency and courtesy can achieve. Bonner is presented as the ‘ideal’ Blackfella, a product of the assimilation period: he could read and write and was dignified, decent and courteous (and, coincidentally, Liberal). The inclusion of this reference to Bonner in the address may hint at the “My best friend is an Aborigine” syndrome (Heiss 71), but it also provides a discursive example to the listener of the ways in which ‘equalness’ is suggested, assumed, privileged or denied. It is a reminder, in the same vein of Patten and Ferguson’s fights for rights, that what is equal has always been apparent to the colonised. Your present official attitude is one of prejudice and misunderstanding … we are no more dirty, lazy stupid, criminal, or immoral than yourselves. Also, your slanders against our race are a moral lie, told to throw all the blame for your troubles on to us. You, who originally conquered us by guns against our spears, now rely on superiority of numbers to support your false claims of moral and intellectual superiority. After 150 years, we ask you to review the situation and give us a fair deal – a New Deal for Aborigines. The cards have been stacked against us, and we now ask you to play the game like decent Australians. Remember, we do not ask for charity, we ask for justice. Nelson quotes Bonner’s words that “[unjust hardships] can only be changed when people of non Aboriginal extraction are prepared to listen, to hear what Aboriginal people are saying and then work with us to achieve those ends”. The need for non-Indigenous Australians to listen, to be shaken out of their complacent equalness appears to have gone unheard. Fiumara, in her philosophy of listening, states: “at this point the opportunity is offered for becoming aware that the compulsion to win is due less to the intrinsic difficulty of the situation than to inhibitions induced by a non-listening language that prevents us from seeing that which would otherwise be clear” (198). It is this compulsion to win, or to at least not be seen to be losing that contributes to the unequalness of this particular “sorry” and the need to construct an equal footing. This particular utterance of sorry does not come from an acknowledged place of difference and its attached history of colonisation; instead it strives to create a foundation based on a lack of anyone being positioned on the high moral ground. It is an irony that pervades the address considering it was the coloniser’s belief in his/her moral superiority that took the first child to begin with. Nelson’s address attempts to construct the utterance of “sorry”, and its intended meaning in this specific context, on ‘equal’ ground: his representation is that we are all Australians, “us” and ‘them’ combined, “we” all suffered and made sacrifices; “we” all deserve respect and equal acknowledgment of the contribution “we” all made to this “enviable” nation. And therein lies the unequalness, the inequality, the injustice, of this particular “sorry”. This particular “sorry” is born from and maintains the structures, policies, discourses and language that led to the taking of Indigenous children in the first place. In his attempt to create a “sorry” that drew equally from the “charitable” as well as the “misjudged” deeds of white Australia, Nelson’s “We Are Sorry – Address to Parliament” increased the experiences of inequality. Chow writes that in the politics of admittance the equal depends on “acceptance by permission … and yet, being ‘admitted’ is never simply a matter of possessing the right permit, for validation and acknowledgment must also be present for admittance to be complete” (36-37). References Augoustinos, Martha, Amanda LeCouteur, and John Soyland. “Self-Sufficient Arguments in Political Rhetoric: Constructing Reconciliation and Apologizing to the Stolen Generations.” Discourse and Society 13.1 (2002): 105-142.Bringing Them Home: National Inquiry into the Separation of Aboriginal and Torres Strait Islander Children from Their Families. Sydney: Human Rights and Equal Opportunity Commission, 1997.Aborigines Protection Act 1909: An Act to Provide for the Protection and Care of Aborigines; To Repeal the Supply of Liquors Aborigines Prevention Act; To Amend the Vagrancy Act, 1902, and the Police Offences (Amendment) Act, 1908; And for Purposes Consequent Thereon or Incidental Thereto. Assented to 20 Dec. 1909. Digital Collections: Books and Serial, National Library of Australia. 24 Mar. 2008 < http://www.nla.gov.au/apps/cdview?pi=nla.aus-vn71409-9x-s1-v >.Chow, Rey. “The Politics of Admittance: Female Sexual Agency, Miscegenation and the Formation of Community in Frantz Fanon.” In Anthony C. Alessandrini, ed. Frantz Fanon: Critical Perspectives. London: Routledge, 1999. 34-56.Felman, Shoshana. “Theaters of Justice: Arendt in Jerusalem, the Eichmann Trial and the Redefinition of Legal Meaning in the Wake of the Holocaust.” Critical Inquiry 27.2 (2001): 201-238.Fiumara, Gemma Corradi. The Other Side of Language: A Philosophy of Listening. London and New York: Routledge, 2006.Heiss, Anita. I’m Not a Racist But… UK: Salt Publishing, 2007.Janca, Aleksandar, and Clothilde Bullen. “Aboriginal Concept of Time and Its Mental Health Implications.” Australian Psychiatry 11 (Supplement 2003): 40-44.Nelson, Brendan. “We Are Sorry – Address to Parliament.” 14 Feb. 2008 < http://www.liberal.org.au/info/news/detail/20080213_ WearesorryAddresstoParliament.php >.Patten, Jack, and William Ferguson. Aborigines Claim Citizen Rights! A Statement for the Aborigines Progressive Association. Sydney: The Publicist, 1938.Taylor, Martin, and James Francis. Bludgers in Grass Castles: Native Title and the Unpaid Debts of the Pastoral Industry. Chippendale: Resistance Books, 1997.William, Ross. “‘Why Should I Feel Guilty?’ Reflections on the Workings of White-Aboriginal Relations.” Australian Psychologist 35.2 (2000): 136-142.Wolfe, Patrick. Settler Colonialism and the Transformation of Anthropology: The Politics and Poetics of an Ethnographic Event. London and New York: Cassell, 1999.

Lars von Trier’s film Melancholia depicts the last days of the earth through the eyes of a young woman, Justine, who is suffering from a severe depressive illness. In the hours leading up to the Earth’s destruction through the impact of a massive blue planet named Melancholia, Justine tells her sister that “the Earth is evil, we don’t need to grieve for it. Nobody will miss it.” We can read this apparently anti-environmental statement in one sense as a symptom of Justine’s melancholic depression. The Diagnostic and Statistical Manual of Mental Disorders defines melancholia as a form of depression that is “qualitatively different from the sadness experienced during bereavement” (419). It is as if Justine’s illness relates to some ungrievable loss, a loss so pathologically far reaching that it short circuits the normal psychology of mourning. But, in another sense, does her statement not strike us with the ring of an absolute and inescapable truth? In the wake of our destruction, there would be no one left to mourn it since human memory itself would have been destroyed along with the global ecosystems which support and sustain it. The film’s central dramatic metaphor is that the experience of a severe depressive episode is like the destruction of the world. But the metaphor can be turned around to suggest that ecological crisis, real irreparable damage to the environment to the point where it may no longer be able to support human life, affects us with a collective melancholia because the destruction of the human species is a strictly ungrievable event. The discoveries of Charles Darwin in the nineteenth century constituted a major thought event which placed the emergence of humanity within a temporal context extending far beyond the limits of human memory. Claire Colebrook suggests that the equivalent event for present times is the thought of our own extinction, the awareness that environmental changes could bring about the end of the species: “[the] extinction awareness that is coming to the fore in the twenty-first century adds the sense of an ending to the broader awareness of the historical emergence of the human species.” While the scientific data is stark, our mediated cultural experience provides us with plenty of opportunities to, in Colebrook’s words, “[domesticate] the sense of the human end” by affirming “various modes of ‘post-humanism’” in ways which ultimately deny the shattering truth of extinction. This domestication obviously takes place in one sense on the level of a conscious denial of the scale of the ecological crisis. On another level, however, environmentally conscious representations of “the planet” or “nature” as a sheer autonomous objectivity, a self-contained but endangered natural order, may ultimately be the greatest obstacle to genuine ecological thinking. By invoking the concept of a non-human nature in perfect balance with itself we factor ourselves out of the ecological equation while simultaneously drawing on the power of an objectifying gaze. Slavoj Žižek gives the example of Alan Weisman’s book The World Without Us which imagines a contemporary world in which all humans have disappeared and nature reasserts itself in the ruins of our abandoned cities. Žižek describes this as the ultimate expression of ideology because: we, the humans, are here reduced to a pure disembodied gaze observing our own absence [...] this is the fundamental subjective position of fantasy: to be reduced to a gaze observing the world in the condition of the subject’s non-existence—like the fantasy of witnessing the act of one’s own conception, parental copulation, or the act of witnessing one’s own burial (80). In many ways, the very spectacle or fantasy of our own destruction has provided us with a powerful means of naturalising it—environmental catastrophe occurs to and in a “nature” whose essence excludes us—and this renders it compatible with a psychology by which the human end is itself internalised, processed, and normalised. Ironically, this normalisation may have been affected to a great extent through the popularisation, over the last ten years or so, of environmental discourses relating to the grave threats of climate change. A film such as Wall-E, for example, shows us an entirely depopulated, desertified world in which the eponymous robot character sorts through the trash of human history, living an almost-human life among the ruins. The robot functions as a kind of proxy humanity, placing us, the viewers, in a position posterior to our own species extinction and thus sending us the ultimately reassuring message that, even in our absence, our absence will be noted. In a similar way, the drama-documentary The Age of Stupid presents a future world devastated by environmental collapse in which a lone archivist presides over the whole digitised memory of humanity and carefully constructs out of actual news and documentary footage the story of our demise. These narratives and others like them ultimately serve, whatever their intentions, to domesticate the end of humanity through the logic of a post-human mastery of the story of our own obliteration. The starker truth with which Melancholia confronts us is that the end of humanity cannot and will not be internalised by any process of human memorialisation. Von Trier’s film does not portray any post-catastrophe world from which we might be able to extract a degree of psychological comfort or residual sense of mastery. Rather, the narrative frame is entirely bounded by the impact event, which we witness first in the film’s opening shots and then again at its close. There is no narrative time posterior to the impact and yet for us, the viewers, everything happens in its shattering aftermath, according to the strange non-successional logic of the future-anterior. Everything begins and ends with the moment of impact. If the narrative itself is concerned with the lives of the characters, particularly the effects of the main character’s depression on her family relationships, then the film’s central event remains radically disjunctive, incapable of being processed on this interpersonal level through the standard cinematic tropes of the disaster or survival genres. The value of regarding Melancholia as an environmental film, then, is that it profoundly de-psychologises the prospect of our extinction while forcing the burden of this event’s unfathomable content onto us. Von Trier’s film suggests that melancholy, not mourning, is a more apt emotional register for ecological crisis and for the extinction awareness it brings, and in this sense Melancholia represents a valuable alternative to more standard environmental narratives which remain susceptible to ideological reinscriptions of human (or post-human) mastery. As ecocritic Timothy Morton suggests, “melancholy is more apt, even more ethically appropriate, to an ecological situation in which the worst has already happened, and in which we find ourselves [...] already fully implicated” (75–6). The most influential account of mourning and melancholia comes from Sigmund Freud, who described these attitudes as two different ways of dealing with loss. In the process of mourning, Freud states that there comes the realisation “that the loved object no longer exists” which “[demands] that all libido shall be withdrawn from its attachments to that object” (245). The healthy outcome of this very painful process is that our libidinal attachments are free once again to take on another object of love; the lost object can be replaced according to a logic of temporal succession. Melancholia also results from a loss, says Freud, but this time it relates not simply or primarily to a replaceable external object but, more complexly, to something in the ego itself, not a discrete thing in the world but a certain way of being in the world which the lost object facilitated. Freud writes that the trauma of melancholia is thus manifested by the ego itself taking on or embodying the loss. The ego, stripped of its sense of being, comes to mimic the non-existence of that which once supported it. The “delusion” of the melancholic’s depressive state, says Freud, stems from the fact that something has ruptured her affective and libidinal attachment to the world, but this cannot be psychologically processed in terms of a replaceable loss since what is lost was never simply an external object. Her world is struck by an absence that cannot be mourned because it is kept alive as a non-being which she is. She has taken on the burden of this structural impossibility and does not pursue an imaginary resolution of it which, to invoke Žižek’s Lacanian terms once more, would involve her submitting to the subjective position of fantasy (i.e. becoming a witness to her own non-existence). The melancholic’s attitude is, Freud observes, “psychologically very remarkable” because it involves “an overcoming of the instinct which compels every living thing to cling to life” (246). The melancholic carves out an existence apparently contrary to nature. This is the context in which Justine remarks that the earth, as an ungrievable object, is “evil.” Her melancholia is never explained in the course of the film, and, indeed, we see little of her personality apart from the events which manifest her psychological crisis. The film opens with the moment of interplanetary impact itself. The great blue planet of Melancholia approaches and begins to swallow the earth into its atmosphere. We cut immediately to Justine and her sister in the moments just before the impact: the air is electrified by the approaching collision and birds cascade from the trees. Our way into the narrative is this moment of chaos and dispersion, but von Trier’s depiction of it, his use of highly choreographed slow-motion shots resembling tableaux vivants, distance us from any sense of urgency or immediacy. It is as if the closer we come to the collision, the less real and the more stylised the world becomes; as if the impact holds a content which cannot be rendered in realist terms. By contrast, the subsequent scenes focusing on Justine’s interpersonal drama use a shaky, handheld camera which embeds us in the action. The narrative follows Justine on her wedding day. As events unfold we see cracks appear in the wedding party’s luxurious facade: Justine’s divorced parents argue viciously; her wealthy brother-in-law, who funded the wedding, fears that the occasion may be ruined by petty squabbling, to his great expense. Beneath these cracks, however, we realise that there is a deeper, more inexplicable crack opening up within Justine herself. At one point she retreats with her newlywed husband from the tumult of the wedding party. We expect from this scene an articulation or partial resolution, perhaps, of Justine’s mental conflict, or at least an insight into her character. In a more conventional story, this moment of conjugal intimacy would allow Justine to express an “authentic” desire, distinct from the superficial squabbling of her family, a means to “be herself.” But this doesn’t happen. Justine inexplicably rejects her husband’s overtures. In clinical terms, we might say that Justine’s behaviour corresponds to “anhedonia,” a loss of interest in the normal sources of pleasure or enjoyment. Invoking Freud, we could add to this that the very objective viability of her libidinal attachments has been called into question and that this is what precipitates her crisis. If such attachments are what ground us in reality, Justine’s desire seems to have become ungrounded through the emergence of something “nonobjectifiable,” to borrow a term from philosophers Deleuze and Guattari (What is Philosophy?, 209). This “something” is revealed only in the second half of the film with the appearance of Melancholia and the prospect of its obliterating impact. Justine is drawn to this new planet, in one scene luxuriating naked beneath its blue glow. We could argue, in one sense, that she has discovered in Melancholia a correlate to her own self-destructive desire: the only thing that can possibly gratify her is the annihilation of the earth itself. However in another, more constructive sense, we can say that her melancholic desire amounts to a kind of geophilosophical critique, a political and ultimately ecological protest against the territorialisation of her desire according to a supposed acceptability of objects. Deleuze and Guattari suggest that, if desire’s libidinal attachments form a kind of ground or “territory” then all territories interact with one another at some level because they are all equally founded on “lines of deterritorialization” sweeping them towards a mutually shared, extra-territorial outside (A Thousand Plateaus, 9). Or, putting it in plainer terms: beneath every ground is a non-ground such that the earth cannot ultimately ground itself in itself. Every mental, material, or social territory is founded upon this global movement of ungrounding. The trauma of Justine’s melancholia refers us to something which cannot be resolved within the given territories of her social or interpersonal milieus. While her illness can be registered in terms of the events of the film’s narrative time, the film’s central event—the collision with Melancholia—remains irreducible to the memorial properties of storytelling. We may thus argue that the impact event is not strictly speaking an element of the film’s narrative, but rather a pure cinematic sign evoking a radical form of ecological openness. The film moves through different territories—conjugal, familial, economic, scientific—but what propels us from one territory to another is the impact event whose content is reducible to none of these territories. Of all the film’s characters, only Justine is “open” to this absolute irreducibility, this resistance to closure. Her openness to Melancholia is not determined by whether or not it can be objectified, that is, rendered assimilable to the terms of a given territory. Both her brother-in-law (an amateur astronomer) and her sister attempt to calculate the chances of impact, but Justine remains open to it in a manner which does not close off that which precludes survival. In the end, as Melancholia bears down on the Earth, Justine’s attitude—which in Freud’s terms is antithetical to the instinct for life—turns out to be the most appropriate one. The point of this article is certainly not to argue that we should acquiesce to the traumatic realities of environmental crisis. Its aim, rather, is to suggest that well-being and harmony may no longer describe the appropriate emotional register for ecological thinking, given the current urgency of the crisis. Human and ecological health may, after all, be radically different and incommensurable things. The great anthropologist and structuralist thinker Claude Lévi-Strauss once remarked: I am concerned with the well-being of plants and animals that are threatened by humanity. I think ecologists make the mistake of thinking that they can defend humans and nature at the same time. I think it is necessary to decide if one prefers humans or nature. I am on the side of nature (qtd in Conley, 66). Lévi-Strauss may well be right when he says that a common human and ecological health may be an illusion of wishful thinking. However, what if there is a common trauma, whose ineradicability would not be a tragedy but, rather, evidence of radical openness in which we no longer have to pick sides (humans or plants and animals)? What if the proper “base” from which to begin thinking ecologically were not a conception of a harmonious human-ecological whole but a foundational non-harmony, an encounter with which contains something ineliminably traumatising? In a recent paper, the philosopher Reza Negarestani proposes just such a traumatic account of ecological openness. All existence, understood geophilosophically, is, says Negarestani, “conditioned by a concatenation of traumas or cuts [...] there is no single or isolated psychic trauma [...] there is no psychic trauma without an organic trauma and no organic trauma without a terrestrial trauma that in turn is deepened into open cosmic vistas.” Ecological openness, in this sense, would be necessarily melancholic, in the terms described above, in that it would necessitate the perpetual precariousness of those links by which we seek to ground ourselves. Ecology is all too often given to a “mournful” attitude, which is, as we’ve argued, the very attitude of psychological incorporation, healing, and normalisation. Similarly, “nature,” we are told, holds the key to harmonious self-regulation. But what if today such notions are obstacles to a genuine awareness of the ecological realities facing us all (humans and non-humans)? What if this ideal of nature were just a product of our own desire for stability, order, and regularity—for some imaginary extra-social and non-human point of reference by which to attain to a position of mastery in the telling of the story of ourselves? References Age of Stupid, The. Dir. Fanny Armstrong. Spanner Films, 2009. American Psychological Association. Diagnostic and Statistical Manual of Mental Disorders. 4th Ed. Text Revision. Washington: American Psychological Association, 2000. Colebrook, Claire. “Introduction: Framing the End of the Species.”.Extinction. Ed. Claire Colebrook. Open Humanities Press. 2012. 14 April 2012. Conley, Vera Andermatt. Ecopolitics: The Environment in Poststructuralist Thought. London: Routledge, 1997. Deleuze, Gilles, and Felix Guattari. A Thousand Plateaus: Capitalism and Schizophrenia. Trans. Brian Massumi. Minneapolis: University of Minnesota Press, 1987. Deleuze, Gilles and Felix Guattari. What is Philosophy? Trans. Hugh Tomlinson and Graham Burchell. New York: Columbia UP, 1994. Freud, Sigmund. “Mourning and Melancholia.” The Standard Edition of the Complete Psychological Works of Sigmund Freud, Vol. 24. Ed. and trans. James Strachey. London: Hogarth Press, 1917. 237–58. Melancholia. Dir. Lars von Trier. Zontropa, 2011. Morton, Timothy. Ecology Without Nature: Rethinking Environmental Aesthetics. Cambridge: Harvard University Press, 2007. Negarestani, Reza. “On the Revolutionary Earth: A Dialectic in Territopic Materialism.” Dark Materialism Conference. Natural History Museum, London. January 12th 2011. Weisman, Alan. The World Without Us. New York: Picador, 2007. WALL-E. Dir. Andrew Stanton. Pixar, 2008. Žižek, Slavoj. Living in the End Times. London: Verso, 2010.

This article investigates the prosthesis of identity through the process of branding. It examines cross-cultural manifestations of this phenomena from sixth millennium BCE Syria to twelfth century Japan and Britain. From the Neolithic Era, humanity has sort to extend their identities using pictorial signs that were characteristically simple. Designed to be distinctive and instantly recognisable, the totemic symbols served to signal the origin of the bearer. Subsequently, the development of branding coincided with periods of increased in mobility both in respect to geography and social strata. This includes fifth millennium Mesopotamia, nineteenth century Britain, and America during the 1920s.There are fewer articles of greater influence on contemporary culture than A Theory of Human Motivation written by Abraham Maslow in 1943. Nearly seventy-five years later, his theories about the societal need for “belongingness” and “esteem” remain a mainstay of advertising campaigns (Maslow). Although the principles are used to sell a broad range of products from shampoo to breakfast cereal they are epitomised by apparel. This is with refence to garments and accessories bearing corporation logos. Whereas other purchased items, imbued with abstract products, are intended for personal consumption the public display of these symbols may be interpreted as a form of signalling. The intention of the wearers is to literally seek the fulfilment of the aforementioned social needs. This article investigates the use of brands as prosthesis.Coats and Crests: Identity Garnered on Garments in the Middle Ages and the Muromachi PeriodA logo, at its most basic, is a pictorial sign. In his essay, The Visual Language, Ernest Gombrich described the principle as reducing images to “distinctive features” (Gombrich 46). They represent a “simplification of code,” the meaning of which we are conditioned to recognise (Gombrich 46). Logos may also be interpreted as a manifestation of totemism. According to anthropologist Claude Levi-Strauss, the principle exists in all civilisations and reflects an effort to evoke the power of nature (71-127). Totemism is also a method of population distribution (Levi-Strauss 166).This principle, in a form garnered on garments, is manifested in Mon Kiri. The practice of cutting out family crests evolved into a form of corporate branding in Japan during the Meiji Period (1868-1912) (Christensen 14). During the Muromachi period (1336-1573) the crests provided an integral means of identification on the battlefield (Christensen 13). The adorning of crests on armour was also exercised in Europe during the twelfth century, when the faces of knights were similarly obscured by helmets (Family Crests of Japan 8). Both Mon Kiri and “Coat[s] of Arms” utilised totemic symbols (Family Crests of Japan 8; Elven 14; Christensen 13). The mon for the imperial family (figs. 1 & 2) during the Muromachi Period featured chrysanthemum and paulownia flowers (Goin’ Japaneque). “Coat[s] of Arms” in Britain featured a menagerie of animals including lions (fig. 3), horses and eagles (Elven).The prothesis of identity through garnering symbols on the battlefield provided “safety” through demonstrating “belongingness”. This constituted a conflation of two separate “needs” in the “hierarchy of prepotency” propositioned by Maslow. Fig. 1. The mon symbolising the Imperial Family during the Muromachi Period featured chrysanthemum and paulownia. "Kamon (Japanese Family Crests): Ancient Key to Samurai Culture." Goin' Japaneque! 15 Nov. 2015. 27 July 2019 <http://goinjapanesque.com/05983/>.Fig. 2. An example of the crest being utilised on a garment can be found in this portrait of samurai Oda Nobunaga. "Japan's 12 Most Famous Samurai." All About Japan. 27 Aug. 2018. 27 July 2019 <https://allabout-japan.com/en/article/5818/>.Fig. 3. A detail from the “Index of Subjects of Crests.” Elven, John Peter. The Book of Family Crests: Comprising Nearly Every Family Bearing, Properly Blazoned and Explained, Accompanied by Upwards of Four Thousand Engravings. Henry Washbourne, 1847.The Pursuit of Prestige: Prosthetic Pedigree from the Late Georgian to the Victorian Eras In 1817, the seal engraver to Prince Regent, Alexander Deuchar, described the function of family crests in British Crests: Containing The Crest and Mottos of The Families of Great Britain and Ireland; Together with Those of The Principal Cities and Heraldic Terms as follows: The first approach to civilization is the distinction of ranks. So necessary is this to the welfare and existence of society, that, without it, anarchy and confusion must prevail… In an early stage, heraldic emblems were characteristic of the bearer… Certain ordinances were made, regulating the mode of bearing arms, and who were entitled to bear them. (i-v)The partitioning of social classes in Britain had deteriorated by the time this compendium was published, with displays of “conspicuous consumption” displacing “heraldic emblems” as a primary method of status signalling (Deuchar 2; Han et al. 18). A consumerism born of newfound affluence, and the desire to signify this wealth through luxury goods, was as integral to the Industrial Revolution as technological development. In Rebels against the Future, published in 1996, Kirkpatrick Sale described the phenomenon:A substantial part of the new population, though still a distinct minority, was made modestly affluent, in some places quite wealthy, by privatization of of the countryside and the industrialization of the cities, and by the sorts of commercial and other services that this called forth. The new money stimulated the consumer demand… that allowed a market economy of a scope not known before. (40)This also reflected improvements in the provision of “health, food [and] education” (Maslow; Snow 25-28). With their “physiological needs” accommodated, this ”substantial part” of the population were able to prioritised their “esteem needs” including the pursuit for prestige (Sale 40; Maslow).In Britain during the Middle Ages laws “specified in minute detail” what each class was permitted to wear (Han et al. 15). A groom, for example, was not able to wear clothing that exceeded two marks in value (Han et al. 15). In a distinct departure during the Industrial Era, it was common for the “middling and lower classes” to “ape” the “fashionable vices of their superiors” (Sale 41). Although mon-like labels that were “simplified so as to be conspicuous and instantly recognisable” emerged in Europe during the nineteenth century their application on garments remained discrete up until the early twentieth century (Christensen 13-14; Moore and Reid 24). During the 1920s, the French companies Hermes and Coco Chanel were amongst the clothing manufacturers to pioneer this principle (Chaney; Icon).During the 1860s, Lincolnshire-born Charles Frederick Worth affixed gold stamped labels to the insides of his garments (Polan et al. 9; Press). Operating from Paris, the innovation was consistent with the introduction of trademark laws in France in 1857 (Lopes et al.). He would become known as the “Father of Haute Couture”, creating dresses for royalty and celebrities including Empress Eugene from Constantinople, French actress Sarah Bernhardt and Australian Opera Singer Nellie Melba (Lopes et al.; Krick). The clothing labels proved and ineffective deterrent to counterfeit, and by the 1890s the House of Worth implemented other measures to authenticate their products (Press). The legitimisation of the origin of a product is, arguably, the primary function of branding. This principle is also applicable to subjects. The prothesis of brands, as totemic symbols, assisted consumers to relocate themselves within a new system of population distribution (Levi-Strauss 166). It was one born of commerce as opposed to heraldry.Selling of Self: Conferring Identity from the Neolithic to Modern ErasIn his 1817 compendium on family crests, Deuchar elaborated on heraldry by writing:Ignoble birth was considered as a stain almost indelible… Illustrious parentage, on the other hand, constituted the very basis of honour: it communicated peculiar rights and privileges, to which the meaner born man might not aspire. (v-vi)The Twinings Logo (fig. 4) has remained unchanged since the design was commissioned by the grandson of the company founder Richard Twining in 1787 (Twining). In addition to reflecting the heritage of the family-owned company, the brand indicated the origin of the tea. This became pertinent during the nineteenth century. Plantations began to operate from Assam to Ceylon (Jones 267-269). Amidst the rampant diversification of tea sources in the Victorian era, concerns about the “unhygienic practices” of Chinese producers were proliferated (Wengrow 11). Subsequently, the brand also offered consumers assurance in quality. Fig. 4. The Twinings Logo reproduced from "History of Twinings." Twinings. 24 July 2019 <https://www.twinings.co.uk/about-twinings/history-of-twinings>.The term ‘brand’, adapted from the Norse “brandr”, was introduced into the English language during the sixteenth century (Starcevic 179). At its most literal, it translates as to “burn down” (Starcevic 179). Using hot elements to singe markings onto animals been recorded as early as 2700 BCE in Egypt (Starcevic 182). However, archaeologists concur that the modern principle of branding predates this practice. The implementation of carved seals or stamps to make indelible impressions of handcrafted objects dates back to Prehistoric Mesopotamia (Starcevic 183; Wengrow 13). Similar traditions developed during the Bronze Age in both China and the Indus Valley (Starcevic 185). In all three civilisations branding facilitated both commerce and aspects of Totemism. In the sixth millennium BCE in “Prehistoric” Mesopotamia, referred to as the Halaf period, stone seals were carved to emulate organic form such as animal teeth (Wengrow 13-14). They were used to safeguard objects by “confer[ring] part of the bearer’s personality” (Wengrow 14). They were concurrently applied to secure the contents of vessels containing “exotic goods” used in transactions (Wengrow 15). Worn as amulets (figs. 5 & 6) the seals, and the symbols they produced, were a physical extension of their owners (Wengrow 14).Fig. 5. Recreation of stamp seal amulets from Neolithic Mesopotamia during the sixth millennium BCE. Wengrow, David. "Prehistories of Commodity Branding." Current Anthropology 49.1 (2008): 14.Fig. 6. “Lot 25Y: Rare Syrian Steatite Amulet – Fertility God 5000 BCE.” The Salesroom. 27 July 2019 <https://www.the-saleroom.com/en-gb/auction-catalogues/artemis-gallery-ancient-art/catalogue-id-srartem10006/lot-a850d229-a303-4bae-b68c-a6130005c48a>. Fig. 7. Recreation of stamp seal designs from Mesopotamia from the late fifth to fourth millennium BCE. Wengrow, David. "Prehistories of Commodity Branding." Current Anthropology 49. 1 (2008): 16.In the following millennia, the seals would increase exponentially in application and aesthetic complexity (fig. 7) to support the development of household cum cottage industries (Wengrow 15). In addition to handcrafts, sealed vessels would transport consumables such as wine, aromatic oils and animal fats (Wengrow 18). The illustrations on the seals included depictions of rituals undertaken by human figures and/or allegories using animals. It can be ascertained that the transition in the Victorian Era from heraldry to commerce, from family to corporation, had precedence. By extension, consumers were able to participate in this process of value attribution using brands as signifiers. The principle remained prevalent during the modern and post-modern eras and can be respectively interpreted using structuralist and post-structuralist theory.Totemism to Simulacrum: The Evolution of Advertising from the Modern to Post-Modern Eras In 2011, Lisa Chaney wrote of the inception of the Coco Chanel logo (fig. 8) in her biography Chanel: An Intimate Life: A crucial element in the signature design of the Chanel No.5 bottle is the small black ‘C’ within a black circle set as the seal at the neck. On the top of the lid are two more ‘C’s, intertwined back to back… from at least 1924, the No5 bottles sported the unmistakable logo… these two ‘C’s referred to Gabrielle, – in other words Coco Chanel herself, and would become the logo for the House of Chanel. Chaney continued by describing Chanel’s fascination of totemic symbols as expressed through her use of tarot cards. She also “surrounded herself with objects ripe with meaning” such as representations of wheat and lions in reference prosperity and to her zodiac symbol ‘Leo’ respectively. Fig. 8. No5 Chanel Perfume, released in 1924, featured a seal-like logo attached to the bottle neck. “No5.” Chanel. 25 July 2019 <https://www.chanel.com/us/fragrance/p/120450/n5-parfum-grand-extrait/>.Fig. 9. This illustration of the bottle by Georges Goursat was published in a women’s magazine circa 1920s. “1921 Chanel No5.” Inside Chanel. 26 July 2019 <http://inside.chanel.com/en/timeline/1921_no5>; “La 4éme Fête de l’Histoire Samedi 16 et dimache 17 juin.” Ville de Perigueux. Musée d’art et d’archéologie du Périgord. 28 Mar. 2018. 26 July 2019 <https://www.perigueux-maap.fr/category/archives/page/5/>. This product was considered the “financial basis” of the Chanel “empire” which emerged during the second and third decades of the twentieth century (Tikkanen). Chanel is credited for revolutionising Haute Couture by introducing chic modern designs that emphasised “simplicity and comfort.” This was as opposed to the corseted highly embellished fashion that characterised the Victorian Era (Tikkanen). The lavish designs released by the House of Worth were, in and of themselves, “conspicuous” displays of “consumption” (Veblen 17). In contrast, the prestige and status associated with the “poor girl” look introduced by Chanel was invested in the story of the designer (Tikkanen). A primary example is her marinière or sailor’s blouse with a Breton stripe that epitomised her ascension from café singer to couturier (Tikkanen; Burstein 8). This signifier might have gone unobserved by less discerning consumers of fashion if it were not for branding. Not unlike the Prehistoric Mesopotamians, this iteration of branding is a process which “confer[s]” the “personality” of the designer into the garment (Wengrow 13 -14). The wearer of the garment is, in turn, is imbued by extension. Advertisers in the post-structuralist era embraced Levi-Strauss’s structuralist anthropological theories (Williamson 50). This is with particular reference to “bricolage” or the “preconditioning” of totemic symbols (Williamson 173; Pool 50). Subsequently, advertising creatives cum “bricoleur” employed his principles to imbue the brands with symbolic power. This symbolic capital was, arguably, transferable to the product and, ultimately, to its consumer (Williamson 173).Post-structuralist and semiotician Jean Baudrillard “exhaustively” critiqued brands and the advertising, or simulacrum, that embellished them between the late 1960s and early 1980s (Wengrow 10-11). In Simulacra and Simulation he wrote,it is the reflection of a profound reality; it masks and denatures a profound reality; it masks the absence of a profound reality; it has no relation to any reality whatsoever: it is its own pure simulacrum. (6)The symbolic power of the Chanel brand resonates in the ‘profound reality’ of her story. It is efficiently ‘denatured’ through becoming simplified, conspicuous and instantly recognisable. It is, as a logo, physically juxtaposed as simulacra onto apparel. This simulacrum, in turn, effects the ‘profound reality’ of the consumer. In 1899, economist Thorstein Veblen wrote in The Theory of the Leisure Class:Conspicuous consumption of valuable goods it the means of reputability to the gentleman of leisure… costly entertainments, such as potlatch or the ball, are peculiarly adapted to serve this end… he consumes vicariously for his host at the same time that he is witness to the consumption… he is also made to witness his host’s facility in etiquette. (47)Therefore, according to Veblen, it was the witnessing of “wasteful” consumption that “confers status” as opposed the primary conspicuous act (Han et al. 18). Despite television being in its experimental infancy advertising was at “the height of its powers” during the 1920s (Clark et al. 18; Hill 30). Post-World War I consumers, in America, experienced an unaccustomed level of prosperity and were unsuspecting of the motives of the newly formed advertising agencies (Clark et al. 18). Subsequently, the ‘witnessing’ of consumption could be constructed across a plethora of media from the newly emerged commercial radio to billboards (Hill viii–25). The resulting ‘status’ was ‘conferred’ onto brand logos. Women’s magazines, with a legacy dating back to 1828, were a primary locus (Hill 10).Belonging in a Post-Structuralist WorldIt is significant to note that, in a post-structuralist world, consumers do not exclusively seek upward mobility in their selection of brands. The establishment of counter-culture icon Levi-Strauss and Co. was concurrent to the emergence of both The House of Worth and Coco Chanel. The Bavarian-born Levi Strauss commenced selling apparel in San Francisco in 1853 (Levi’s). Two decades later, in partnership with Nevada born tailor Jacob Davis, he patented the “riveted-for-strength” workwear using blue denim (Levi’s). Although the ontology of ‘jeans’ is contested, references to “Jene Fustyan” date back the sixteenth century (Snyder 139). It involved the combining cotton, wool and linen to create “vestments” for Geonese sailors (Snyder 138). The Two Horse Logo (fig. 10), depicting them unable to pull apart a pair of jeans to symbolise strength, has been in continuous use by Levi Strauss & Co. company since its design in 1886 (Levi’s). Fig. 10. The Two Horse Logo by Levi Strauss & Co. has been in continuous use since 1886. Staff Unzipped. "Two Horses. One Message." Heritage. Levi Strauss & Co. 1 July 2011. 25 July 2019 <https://www.levistrauss.com/2011/07/01/two-horses-many-versions-one-message/>.The “rugged wear” would become the favoured apparel amongst miners at American Gold Rush (Muthu 6). Subsequently, between the 1930s – 1960s Hollywood films cultivated jeans as a symbol of “defiance” from Stage Coach staring John Wayne in 1939 to Rebel without A Cause staring James Dean in 1955 (Muthu 6; Edgar). Consequently, during the 1960s college students protesting in America (fig. 11) against the draft chose the attire to symbolise their solidarity with the working class (Hedarty). Notwithstanding a 1990s fashion revision of denim into a diversity of garments ranging from jackets to skirts, jeans have remained a wardrobe mainstay for the past half century (Hedarty; Muthu 10). Fig. 11. Although the brand label is not visible, jeans as initially introduced to the American Goldfields in the nineteenth century by Levi Strauss & Co. were cultivated as a symbol of defiance from the 1930s – 1960s. It documents an anti-war protest that occurred at the Pentagon in 1967. Cox, Savannah. "The Anti-Vietnam War Movement." ATI. 14 Dec. 2016. 16 July 2019 <https://allthatsinteresting.com/vietnam-war-protests#7>.In 2003, the journal Science published an article “Does Rejection Hurt? An Fmri Study of Social Exclusion” (Eisenberger et al.). The cross-institutional study demonstrated that the neurological reaction to rejection is indistinguishable to physical pain. Whereas during the 1940s Maslow classified the desire for “belonging” as secondary to “physiological needs,” early twenty-first century psychologists would suggest “[social] acceptance is a mechanism for survival” (Weir 50). In Simulacra and Simulation, Jean Baudrillard wrote: Today abstraction is no longer that of the map, the double, the mirror or the concept. Simulation is no longer that of a territory, a referential being or a substance. It is the generation by models of a real without origin or reality: a hyperreal… (1)In the intervening thirty-eight years since this document was published the artifice of our interactions has increased exponentially. In order to locate ‘belongness’ in this hyperreality, the identities of the seekers require a level of encoding. Brands, as signifiers, provide a vehicle.Whereas in Prehistoric Mesopotamia carved seals, worn as amulets, were used to extend the identity of a person, in post-digital China WeChat QR codes (fig. 12), stored in mobile phones, are used to facilitate transactions from exchanging contact details to commerce. Like other totems, they provide access to information such as locations, preferences, beliefs, marital status and financial circumstances. These individualised brands are the most recent incarnation of a technology that has developed over the past eight thousand years. The intermediary iteration, emblems affixed to garments, has remained prevalent since the twelfth century. Their continued salience is due to their visibility and, subsequent, accessibility as signifiers. Fig. 12. It may be posited that Wechat QR codes are a form individualised branding. Like other totems, they store information pertaining to the owner’s location, beliefs, preferences, marital status and financial circumstances. “Join Wechat groups using QR code on 2019.” Techwebsites. 26 July 2019 <https://techwebsites.net/join-wechat-group-qr-code/>.Fig. 13. Brands function effectively as signifiers is due to the international distribution of multinational corporations. This is the shopfront of Chanel in Dubai, which offers customers apparel bearing consistent insignia as the Parisian outlet at on Rue Cambon. Customers of Chanel can signify to each other with the confidence that their products will be recognised. “Chanel.” The Dubai Mall. 26 July 2019 <https://thedubaimall.com/en/shop/chanel>.Navigating a post-structuralist world of increasing mobility necessitates a rudimental understanding of these symbols. Whereas in the nineteenth century status was conveyed through consumption and witnessing consumption, from the twentieth century onwards the garnering of brands made this transaction immediate (Veblen 47; Han et al. 18). The bricolage of the brands is constructed by bricoleurs working in any number of contemporary creative fields such as advertising, filmmaking or song writing. They provide a system by which individuals can convey and recognise identities at prima facie. They enable the prosthesis of identity.ReferencesBaudrillard, Jean. Simulacra and Simulation. Trans. Sheila Faria Glaser. United States: University of Michigan Press, 1994.Burstein, Jessica. Cold Modernism: Literature, Fashion, Art. United States: Pennsylvania State University Press, 2012.Chaney, Lisa. Chanel: An Intimate Life. United Kingdom: Penguin Books Limited, 2011.Christensen, J.A. Cut-Art: An Introduction to Chung-Hua and Kiri-E. New York: Watson-Guptill Publications, 1989. Clark, Eddie M., Timothy C. Brock, David E. Stewart, David W. Stewart. Attention, Attitude, and Affect in Response to Advertising. United Kingdom: Taylor & Francis Group, 1994.Deuchar, Alexander. British Crests: Containing the Crests and Mottos of the Families of Great Britain and Ireland Together with Those of the Principal Cities – Primary So. London: Kirkwood & Sons, 1817.Ebert, Robert. “Great Movie: Stage Coach.” Robert Ebert.com. 1 Aug. 2011. 10 Mar. 2019 <https://www.rogerebert.com/reviews/great-movie-stagecoach-1939>.Elven, John Peter. The Book of Family Crests: Comprising Nearly Every Family Bearing, Properly Blazoned and Explained, Accompanied by Upwards of Four Thousand Engravings. London: Henry Washbourne, 1847.Eisenberger, Naomi I., Matthew D. Lieberman, and Kipling D. Williams. "Does Rejection Hurt? An Fmri Study of Social Exclusion." Science 302.5643 (2003): 290-92.Family Crests of Japan. California: Stone Bridge Press, 2007.Gombrich, Ernst. "The Visual Image: Its Place in Communication." Scientific American 272 (1972): 82-96.Hedarty, Stephanie. "How Jeans Conquered the World." BBC World Service. 28 Feb. 2012. 26 July 2019 <https://www.bbc.com/news/magazine-17101768>. Han, Young Jee, Joseph C. Nunes, and Xavier Drèze. "Signaling Status with Luxury Goods: The Role of Brand Prominence." Journal of Marketing 74.4 (2010): 15-30.Hill, Daniel Delis. Advertising to the American Woman, 1900-1999. United States of Ame: Ohio State University Press, 2002."History of Twinings." Twinings. 24 July 2019 <https://www.twinings.co.uk/about-twinings/history-of-twinings>. icon-icon: Telling You More about Icons. 18 Dec. 2016. 26 July 2019 <http://www.icon-icon.com/en/hermes-logo-the-horse-drawn-carriage/>. Jones, Geoffrey. Merchants to Multinationals: British Trading Companies in the 19th and 20th Centuries. Oxford: Oxford UP, 2002.Kamon (Japanese Family Crests): Ancient Key to Samurai Culture." Goin' Japaneque! 15 Nov. 2015. 27 July 2019 <http://goinjapanesque.com/05983/>. Krick, Jessa. "Charles Frederick Worth (1825-1895) and the House of Worth." Heilburnn Timeline of Art History. The Met. Oct. 2004. 23 July 2019 <https://www.metmuseum.org/toah/hd/wrth/hd_wrth.htm>. Levi’s. "About Levis Strauss & Co." 25 July 2019 <https://www.levis.com.au/about-us.html>. Lévi-Strauss, Claude. Totemism. London: Penguin, 1969.Lopes, Teresa de Silva, and Paul Duguid. Trademarks, Brands, and Competitiveness. Abingdon: Routledge, 2010.Maslow, Abraham. "A Theory of Human Motivation." British Journal of Psychiatry 208.4 (1942): 313-13.Moore, Karl, and Susan Reid. "The Birth of Brand: 4000 Years of Branding History." Business History 4.4 (2008).Muthu, Subramanian Senthikannan. Sustainability in Denim. Cambridge Woodhead Publishing, 2017.Polan, Brenda, and Roger Tredre. The Great Fashion Designers. Oxford: Bloomsbury Publishing, 2009.Pool, Roger C. Introduction. Totemism. New ed. Harmondsworth: Penguin, 1969.Press, Claire. Wardrobe Crisis: How We Went from Sunday Best to Fast Fashion. Melbourne: Schwartz Publishing, 2016.Sale, K. Rebels against the Future: The Luddites and Their War on the Industrial Revolution: Lessons for the Computer Age. Massachusetts: Addison-Wesley, 1996.Snow, C.P. The Two Cultures and the Scientific Revolution. Cambridge: Cambridge University Press, 1959. Snyder, Rachel Louise. Fugitive Denim: A Moving Story of People and Pants in the Borderless World of Global Trade. New York: W.W. Norton, 2008.Starcevic, Sladjana. "The Origin and Historical Development of Branding and Advertising in the Old Civilizations of Africa, Asia and Europe." Marketing 46.3 (2015): 179-96.Tikkanen, Amy. "Coco Chanel." Encyclopaedia Britannica. 19 Apr. 2019. 25 July 2019 <https://www.britannica.com/biography/Coco-Chanel>.Veblen, Thorstein. The Theory of the Leisure Class: An Economic Study in the Evolution of Institutions. London: Macmillan, 1975.Weir, Kirsten. "The Pain of Social Rejection." American Psychological Association 43.4 (2012): 50.Williamson, Judith. Decoding Advertisements: Ideology and Meaning in Advertising. Ideas in Progress. London: Boyars, 1978.

Perhaps nothing in media culture today makes clearer the connection between people’s bodies and their homes than the Emmy-winning reality TV program Extreme Makeover: Home Edition. Home Edition is a spin-off from the original Extreme Makeover, and that fact provides in fundamental form the strong connection that the show demonstrates between bodies and houses. The first EM, initially popular for its focus on cosmetic surgery, laser skin and hair treatments, dental work, cosmetics and wardrobe for mainly middle-aged and self-described unattractive participants, lagged after two full seasons and was finally cancelled entirely, whereas EMHE has continued to accrue viewers and sponsors, as well as accolades (Paulsen, Poniewozik, EMHE Website, Wilhelm). That viewers and the ABC network shifted their attention to the reconstruction of houses over the original version’s direct intervention in problematic bodies indicates that sites of personal transformation are not necessarily within our own physical or emotional beings, but in the larger surround of our environments and in our cultural ideals of home and body. One effect of this shift in the Extreme Makeover format is that a seemingly wider range of narrative problems can be solved relating to houses than to the particular bodies featured on the original show. Although Extreme Makeover featured a few people who’d had previously botched cleft palate surgeries or mastectomies, as Cressida Heyes points out, “the only kind of disability that interests the show is one that can be corrected to conform to able-bodied norms” (22). Most of the recipients were simply middle-aged folks who were ordinary or aged in appearance; many of them seemed self-obsessed and vain, and their children often seemed disturbed by the transformation (Heyes 24). However, children are happy to have a brand new TV and a toy-filled room decorated like their latest fantasy, and they thereby can be drawn into the process of identity transformation in the Home Edition version; in fact, children are required of virtually all recipients of the show’s largess. Because EMHE can do “major surgery” or simply bulldoze an old structure and start with a new building, it is also able to incorporate more variety in its stories—floods, fires, hurricanes, propane explosions, war, crime, immigration, car accidents, unscrupulous contractors, insurance problems, terrorist attacks—the list of traumas is seemingly endless. Home Edition can solve any problem, small or large. Houses are much easier things to repair or reconstruct than bodies. Perhaps partly for this reason, EMHE uses disability as one of its major tropes. Until Season 4, Episode 22, 46.9 percent of the episodes have had some content related to disability or illness of a disabling sort, and this number rises to 76.4 percent if the count includes families that have been traumatised by the (usually recent) death of a family member in childhood or the prime of life by illness, accident or violence. Considering that the percentage of people living with disabilities in the U.S. is defined at 18.1 percent (Steinmetz), EMHE obviously favours them considerably in the selection process. Even the disproportionate numbers of people with disabilities living in poverty and who therefore might be more likely to need help—20.9 percent as opposed to 7.7 percent of the able-bodied population (Steinmetz)—does not fully explain their dominance on the program. In fact, the program seeks out people with new and different physical disabilities and illnesses, sending out emails to local news stations looking for “Extraordinary Mom / Dad recently diagnosed with ALS,” “Family who has a child with PROGERIA (aka ‘little old man’s disease’)” and other particular situations (Simonian). A total of sixty-five ill or disabled people have been featured on the show over the past four years, and, even if one considers its methods maudlin or exploitive, the presence of that much disability and illness is very unusual for reality TV and for TV in general. What the show purports to do is to radically transform multiple aspects of individuals’ lives—and especially lives marred by what are perceived as physical setbacks—via the provision of a luxurious new house, albeit sometimes with the addition of automobiles, mortgage payments or college scholarships. In some ways the assumptions underpinning EMHE fit with a social constructionist body theory that posits an almost infinitely flexible physical matter, of which the definitions and capabilities are largely determined by social concepts and institutions. The social model within the disability studies field has used this theoretical perspective to emphasise the distinction between an impairment, “the physical fact of lacking an arm or a leg,” and disability, “the social process that turns an impairment into a negative by creating barriers to access” (Davis, Bending 12). Accessible housing has certainly been one emphasis of disability rights activists, and many of them have focused on how “design conceptions, in relation to floor plans and allocation of functions to specific spaces, do not conceive of impairment, disease and illness as part of domestic habitation or being” (Imrie 91). In this regard, EMHE appears as a paragon. In one of its most challenging and dramatic Season 1 episodes, the “Design Team” worked on the home of the Ziteks, whose twenty-two-year-old son had been restricted to a sub-floor of the three-level structure since a car accident had paralyzed him. The show refitted the house with an elevator, roll-in bathroom and shower, and wheelchair-accessible doors. Robert Zitek was also provided with sophisticated computer equipment that would help him produce music, a life-long interest that had been halted by his upper-vertebra paralysis. Such examples abound in the new EMHE houses, which have been constructed for families featuring situations such as both blind and deaf members, a child prone to bone breaks due to osteogenesis imperfecta, legs lost in Iraq warfare, allergies that make mold life-threatening, sun sensitivity due to melanoma or polymorphic light eruption or migraines, fragile immune systems (often due to organ transplants or chemotherapy), cerebral palsy, multiple sclerosis, Krabbe disease and autism. EMHE tries to set these lives right via the latest in technology and treatment—computer communication software and hardware, lock systems, wheelchair-friendly design, ventilation and air purification set-ups, the latest in care and mental health approaches for various disabilities and occasional consultations with disabled celebrities like Marlee Matlin. Even when individuals or familes are “[d]iscriminated against on a daily basis by ignorance and physical challenges,” as the program website notes, they “deserve to have a home that doesn’t discriminate against them” (EMHE website, Season 3, Episode 4). The relief that they will be able to inhabit accessible and pleasant environments is evident on the faces of many of these recipients. That physical ease, that ability to move and perform the intimate acts of domestic life, seems according to the show’s narrative to be the most basic element of home. Nonetheless, as Robert Imrie has pointed out, superficial accessibility may still veil “a static, singular conception of the body” (201) that prevents broader change in attitudes about people with disabilities, their activities and their spaces. Starting with the story of the child singing in an attempt at self-comforting from Deleuze and Guattari’s A Thousand Plateaus, J. MacGregor Wise defines home as a process of territorialisation through specific behaviours. “The markers of home … are not simply inanimate objects (a place with stuff),” he notes, “but the presence, habits, and effects of spouses, children, parents, and companions” (299). While Ty Pennington, EMHE’s boisterous host, implies changes for these families along the lines of access to higher education, creative possibilities provided by musical instruments and disability-appropriate art materials, help with home businesses in the way of equipment and licenses and so on, the families’ identity-producing habits are just as likely to be significantly changed by the structural and decorative arrangements made for them by the Design Team. The homes that are created for these families are highly conventional in their structure, layout, decoration, and expectations of use. More specifically, certain behavioural patterns are encouraged and others discouraged by the Design Team’s assumptions. Several themes run through the show’s episodes: Large dining rooms provide for the most common of Pennington’s comments: “You can finally sit down and eat meals together as a family.” A nostalgic value in an era where most families have schedules full of conflicts that prevent such Ozzie-and-Harriet scenarios, it nonetheless predominates. Large kitchens allow for cooking and eating at home, though featured food is usually frozen and instant. In addition, kitchens are not designed for the families’ disabled members; for wheelchair users, for instance, counters need to be lower than usual with open space underneath, so that a wheelchair can roll underneath the counter. Thus, all the wheelchair inhabitants depicted will still be dependent on family members, primarily mothers, to prepare food and clean up after them. (See Imrie, 95-96, for examples of adapted kitchens.) Pets, perhaps because they are inherently “dirty,” are downplayed or absent, even when the family has them when EMHE arrives (except one family that is featured for their animal rescue efforts); interestingly, there are no service dogs, which might obviate the need for some of the high-tech solutions for the disabled offered by the show. The previous example is one element of an emphasis on clutter-free cleanliness and tastefulness combined with a rampant consumerism. While “cultural” elements may be salvaged from exotic immigrant families, most of the houses are very similar and assume a certain kind of commodified style based on new furniture (not humble family hand-me-downs), appliances, toys and expensive, prefab yard gear. Sears is a sponsor of the program, and shopping trips for furniture and appliances form a regular part of the program. Most or all of the houses have large garages, and the families are often given large vehicles by Ford, maintaining a positive take on a reliance on private transportation and gas-guzzling vehicles, but rarely handicap-adapted vans. Living spaces are open, with high ceilings and arches rather than doorways, so that family members will have visual and aural contact. Bedrooms are by contrast presented as private domains of retreat, especially for parents who have demanding (often ill or disabled) children, from which they are considered to need an occasional break. All living and bedrooms are dominated by TVs and other electronica, sometimes presented as an aid to the disabled, but also dominating to the point of excluding other ways of being and interacting. As already mentioned, childless couples and elderly people without children are completely absent. Friends buying houses together and gay couples are also not represented. The ideal of the heterosexual nuclear family is thus perpetuated, even though some of the show’s craftspeople are gay. Likewise, even though “independence” is mentioned frequently in the context of families with disabled members, there are no recipients who are disabled adults living on their own without family caretakers. “Independence” is spoken of mostly in terms of bathing, dressing, using the bathroom and other bodily aspects of life, not in terms of work, friendship, community or self-concept. Perhaps most salient, the EMHE houses are usually created as though nothing about the family will ever again change. While a few of the projects have featured terminally ill parents seeking to leave their children secure after their death, for the most part the families are considered oddly in stasis. Single mothers will stay single mothers, even children with conditions with severe prognoses will continue to live, the five-year-old will sleep forever in a fire-truck bed or dollhouse room, the occasional grandparent installed in his or her own suite will never pass away, and teenagers and young adults (especially the disabled) will never grow up, marry, discover their homosexuality, have a falling out with their parents or leave home. A kind of timeless nostalgia, hearkening back to Gaston Bachelard’s The Poetics of Space, pervades the show. Like the body-modifying Extreme Makeover, the Home Edition version is haunted by the issue of normalisation. The word ‘normal’, in fact, floats through the program’s dialogue frequently, and it is made clear that the goal of the show is to restore, as much as possible, a somewhat glamourised, but status quo existence. The website, in describing the work of one deserving couple notes that “Camp Barnabas is a non-profit organisation that caters to the needs of critically and chronically ill children and gives them the opportunity to be ‘normal’ for one week” (EMHE website, Season 3, Episode 7). Someone at the network is sophisticated enough to put ‘normal’ in quotation marks, and the show demonstrates a relatively inclusive concept of ‘normal’, but the word dominates the show itself, and the concept remains largely unquestioned (See Canguilhem; Davis, Enforcing Normalcy; and Snyder and Mitchell, Narrative, for critiques of the process of normalization in regard to disability). In EMHE there is no sense that disability or illness ever produces anything positive, even though the show also notes repeatedly the inspirational attitudes that people have developed through their disability and illness experiences. Similarly, there is no sense that a little messiness can be creatively productive or even necessary. Wise makes a distinction between “home and the home, home and house, home and domus,” the latter of each pair being normative concepts, whereas the former “is a space of comfort (a never-ending process)” antithetical to oppressive norms, such as the association of the home with the enforced domesticity of women. In cases where the house or domus becomes a place of violence and discomfort, home becomes the process of coping with or resisting the negative aspects of the place (300). Certainly the disabled have experienced this in inaccessible homes, but they may also come to experience a different version in a new EMHE house. For, as Wise puts it, “home can also mean a process of rationalization or submission, a break with the reality of the situation, self-delusion, or falling under the delusion of others” (300). The show’s assumption that the construction of these new houses will to a great extent solve these families’ problems (and that disability itself is the problem, not the failure of our culture to accommodate its many forms) may in fact be a delusional spell under which the recipient families fall. In fact, the show demonstrates a triumphalist narrative prevalent today, in which individual happenstance and extreme circumstances are given responsibility for social ills. In this regard, EMHE acts out an ancient morality play, where the recipients of the show’s largesse are assessed and judged based on what they “deserve,” and the opening of each show, when the Design Team reviews the application video tape of the family, strongly emphasises what good people these are (they work with charities, they love each other, they help out their neighbours) and how their situation is caused by natural disaster, act of God or undeserved tragedy, not their own bad behaviour. Disabilities are viewed as terrible tragedies that befall the young and innocent—there is no lung cancer or emphysema from a former smoking habit, and the recipients paralyzed by gunshots have received them in drive-by shootings or in the line of duty as police officers and soldiers. In addition, one of the functions of large families is that the children veil any selfish motivation the adults may have—they are always seeking the show’s assistance on behalf of the children, not themselves. While the Design Team always notes that there are “so many other deserving people out there,” the implication is that some people’s poverty and need may be their own fault. (See Snyder and Mitchell, Locations 41-67; Blunt and Dowling 116-25; and Holliday.) In addition, the structure of the show—with the opening view of the family’s undeserved problems, their joyous greeting at the arrival of the Team, their departure for the first vacation they may ever have had and then the final exuberance when they return to the new house—creates a sense of complete, almost religious salvation. Such narratives fail to point out social support systems that fail large numbers of people who live in poverty and who struggle with issues of accessibility in terms of not only domestic spaces, but public buildings, educational opportunities and social acceptance. In this way, it echoes elements of the medical model, long criticised in disability studies, where each and every disabled body is conceptualised as a site of individual aberration in need of correction, not as something disabled by an ableist society. In fact, “the house does not shelter us from cosmic forces; at most it filters and selects them” (Deleuze and Guattari, What Is Philosophy?, qtd. in Frichot 61), and those outside forces will still apply to all these families. The normative assumptions inherent in the houses may also become oppressive in spite of their being accessible in a technical sense (a thing necessary but perhaps not sufficient for a sense of home). As Tobin Siebers points out, “[t]he debate in architecture has so far focused more on the fundamental problem of whether buildings and landscapes should be universally accessible than on the aesthetic symbolism by which the built environment mirrors its potential inhabitants” (“Culture” 183). Siebers argues that the Jamesonian “political unconscious” is a “social imaginary” based on a concept of perfection (186) that “enforces a mutual identification between forms of appearance, whether organic, aesthetic, or architectural, and ideal images of the body politic” (185). Able-bodied people are fearful of the disabled’s incurability and refusal of normalisation, and do not accept the statistical fact that, at least through the process of aging, most people will end up dependent, ill and/or disabled at some point in life. Mainstream society “prefers to think of people with disabilities as a small population, a stable population, that nevertheless makes enormous claims on the resources of everyone else” (“Theory” 742). Siebers notes that the use of euphemism and strategies of covering eventually harm efforts to create a society that is home to able-bodied and disabled alike (“Theory” 747) and calls for an exploration of “new modes of beauty that attack aesthetic and political standards that insist on uniformity, balance, hygiene, and formal integrity” (Culture 210). What such an architecture, particularly of an actually livable domestic nature, might look like is an open question, though there are already some examples of people trying to reframe many of the assumptions about housing design. For instance, cohousing, where families and individuals share communal space, yet have private accommodations, too, makes available a larger social group than the nuclear family for social and caretaking activities (Blunt and Dowling, 262-65). But how does one define a beauty-less aesthetic or a pleasant home that is not hygienic? Post-structuralist architects, working on different grounds and usually in a highly theoretical, imaginary framework, however, may offer another clue, as they have also tried to ‘liberate’ architecture from the nostalgic dictates of the aesthetic. Ironically, one of the most famous of these, Peter Eisenman, is well known for producing, in a strange reversal, buildings that render the able-bodied uncomfortable and even sometimes ill (see, in particular, Frank and Eisenman). Of several house designs he produced over the years, Eisenman notes that his intention was to dislocate the house from that comforting metaphysic and symbolism of shelter in order to initiate a search for those possibilities of dwelling that may have been repressed by that metaphysic. The house may once have been a true locus and symbol of nurturing shelter, but in a world of irresolvable anxiety, the meaning and form of shelter must be different. (Eisenman 172) Although Eisenman’s starting point is very different from that of Siebers, it nonetheless resonates with the latter’s desire for an aesthetic that incorporates the “ragged edge” of disabled bodies. Yet few would want to live in a home made less attractive or less comfortable, and the “illusion” of permanence is one of the things that provide rest within our homes. Could there be an architecture, or an aesthetic, of home that could create a new and different kind of comfort and beauty, one that is neither based on a denial of the importance of bodily comfort and pleasure nor based on an oppressively narrow and commercialised set of aesthetic values that implicitly value some people over others? For one thing, instead of viewing home as a place of (false) stasis and permanence, we might see it as a place of continual change and renewal, which any home always becomes in practice anyway. As architect Hélène Frichot suggests, “we must look toward the immanent conditions of architecture, the processes it employs, the serial deformations of its built forms, together with our quotidian spatio-temporal practices” (63) instead of settling into a deadening nostalgia like that seen on EMHE. If we define home as a process of continual territorialisation, if we understand that “[t]here is no fixed self, only the process of looking for one,” and likewise that “there is no home, only the process of forming one” (Wise 303), perhaps we can begin to imagine a different, yet lovely conception of “house” and its relation to the experience of “home.” Extreme Makeover: Home Edition should be lauded for its attempts to include families of a wide variety of ethnic and racial backgrounds, various religions, from different regions around the U.S., both rural and suburban, even occasionally urban, and especially for its bringing to the fore how, indeed, structures can be as disabling as any individual impairment. That it shows designers and builders working with the families of the disabled to create accessible homes may help to change wider attitudes and break down resistance to the building of inclusive housing. However, it so far has missed the opportunity to help viewers think about the ways that our ideal homes may conflict with our constantly evolving social needs and bodily realities. References Bachelard, Gaston. The Poetics of Space. Tr. Maria Jolas. Boston: Beacon Press, 1969. Blunt, Alison, and Robyn Dowling. Home. London and New York: Routledge, 2006. Canguilhem, Georges. The Normal and the Pathological. New York: Zone Books, 1991. Davis, Lennard. Bending Over Backwards: Disability, Dismodernism & Other Difficult Positions. New York: NYUP, 2002. ———. Enforcing Normalcy: Disability, Deafness, and the Body. New York: Verso, 1995. Deleuze, Gilles, and Felix Guattari. A Thousand Plateaus: Capitalism and Schizophrenia. Tr. B. Massumi. Minneapolis: University of Minnesota Press, 1987. ———. What Is Philosophy? Tr. G. Burchell and H. Tomlinson. London and New York: Verso, 1994. Eisenman, Peter Eisenman. “Misreading” in House of Cards. New York: Oxford University Press, 1987. 21 Aug. 2007 http://prelectur.stanford.edu/lecturers/eisenman/biblio.html#cards>. Peter Eisenman Texts Anthology at the Stanford Presidential Lectures and Symposia in the Humanities and Arts site. 5 June 2007 http://prelectur.stanford.edu/lecturers/eisenman/texts.html#misread>. “Extreme Makeover: Home Edition” Website. 18 May 2007 http://abc.go.com/primetime/xtremehome/index.html>; http://abc.go.com/primetime/xtremehome/show.html>; http://abc.go.com/primetime/xtremehome/bios/101.html>; http://abc.go.com/primetime/xtremehome/bios/301.html>; and http://abc.go.com/primetime/xtremehome/bios/401.html>. Frank, Suzanne Sulof, and Peter Eisenman. House VI: The Client’s Response. New York: Watson-Guptill, 1994. Frichot, Hélène. “Stealing into Gilles Deleuze’s Baroque House.” In Deleuze and Space, eds. Ian Buchanan and Gregg Lambert. Deleuze Connections Series. Toronto: University of Toronto P, 2005. 61-79. Heyes, Cressida J. “Cosmetic Surgery and the Televisual Makeover: A Foucauldian feminist reading.” Feminist Media Studies 7.1 (2007): 17-32. Holliday, Ruth. “Home Truths?” In Ordinary Lifestyles: Popular Media, Consumption and Taste. Ed. David Bell and Joanne Hollows. Maidenhead, Berkshire, England: Open UP, 2005. 65-81. Imrie, Rob. Accessible Housing: Quality, Disability and Design. London and New York: Routledge, 2006. Paulsen, Wade. “‘Extreme Makeover: Home Edition’ surges in ratings and adds Ford as auto partner.” Reality TV World. 14 October 2004. 27 March 2005 http://www.realitytvworld.com/index/articles/story.php?s=2981>. Poniewozik, James, with Jeanne McDowell. “Charity Begins at Home: Extreme Makeover: Home Edition renovates its way into the Top 10 one heart-wrenching story at a time.” Time 20 Dec. 2004: i25 p159. Siebers, Tobin. “Disability in Theory: From Social Constructionism to the New Realism of the Body.” American Literary History 13.4 (2001): 737-754. ———. “What Can Disability Studies Learn from the Culture Wars?” Cultural Critique 55 (2003): 182-216. Simonian, Charisse. Email to network affiliates, 10 March 2006. 18 May 2007 http://www.thesmokinggun.com/archive/0327062extreme1.html>. Snyder, Sharon L., and David T. Mitchell. Cultural Locations of Disability. Chicago: U of Chicago P, 2006. ———. Narrative Prosthesis: Disability and the Dependencies of Discourse. Ann Arbor: University of Michigan Press, 2000. Steinmetz, Erika. Americans with Disabilities: 2002. U.S. Department of Commerce, Economics, and Statistics Administration, U.S. Census Bureau, 2006. 15 May 2007 http://www.census.gov/prod/2006pubs/p70-107.pdf>. Wilhelm, Ian. “The Rise of Charity TV (Reality Television Shows).” Chronicle of Philanthropy 19.8 (8 Feb. 2007): n.p. Wise, J. Macgregor. “Home: Territory and Identity.” Cultural Studies 14.2 (2000): 295-310. Citation reference for this article MLA Style Roney, Lisa. "The Extreme Connection Between Bodies and Houses." M/C Journal 10.4 (2007). echo date('d M. Y'); ?> <http://journal.media-culture.org.au/0708/03-roney.php>. APA Style Roney, L. (Aug. 2007) "The Extreme Connection Between Bodies and Houses," M/C Journal, 10(4). Retrieved echo date('d M. Y'); ?> from <http://journal.media-culture.org.au/0708/03-roney.php>.

IntroductionA catastrophe is often considered to be a final decisive event, resulting in a disastrous end. Two recent examples of catastrophes satisfying this definition were the 2012 super storm Sandy in the United States of America and the 2011 floods in Brisbane, Australia. The progress of these disasters was reported worldwide, yet coverage soon disappeared from the headlines, leaving people to deal with the aftermath of rebuilding homes, businesses and lives. The diagnosis of breast cancer is an individual’s catastrophic event. While not on the community-wide scale of the disasters mentioned previously, it can have disastrous effects on the individual as well as their family and friends. At the moment 1 in 8 women can expect to have a breast cancer diagnosis. In Australia alone this means approximately 1,375,000 people are likely to receive this diagnosis in the course of their lifetime. This article addresses how breast cancer can and does prompt women and their supportive friends, families and partners to become more creative as a result of the breast cancer (BC) diagnosis. In these cases, creativity—defined as doing something a little differently or thinking outside the square—can offer some remedy for catastrophe. Becoming totally involved in the creative moment, so as to lose all track of time and forget the trials and worries of BC, is referred to as flow. Flow is an “optimal experience” in which “people become so involved in what they are doing that the activity becomes spontaneous, almost automatic; they stop being aware of themselves as separate from the actions they are performing” (Csikszentmihalyi 53). This is one fruit of the creative process. This article refers to women as having breast cancer because the majority of people diagnosed with BC are women. However it is acknowledged that men constitute 0.8% of the total number of people diagnosed with BC (Breast Cancer in Australia). Responding to public concern, a range of charities has been formed to support people with breast cancer. One such charity is Breast Cancer Care WA (BCCWA). Together with the Australian Research Council (ARC) and Edith Cowan University (ECU), BCCWA supports an online community for people with breast cancer, Breast Cancer Click (Click). The membership of Click includes several male Clickers who are partners and supporters of Click members with BC. The Click online community consists of people with BC and their supporters, as well as health care practitioners and researchers. Those members with breast cancer are very interested in learning more about BC and supporting others in a similar situation whereas the health care practitioners and researchers are both supporting those with breast cancer and exploring the possibilities offered by online communities, to enhance their professional skills. Members of Click could be described as a community of practice, “groups of people informally bound together by shared expertise and passion for a joint enterprise” (Wenger and Snyder 139), in this case a passion for responding positively to a BC diagnosis. Wenger and Snyder go on to say: “People in communities of practice share their experiences and knowledge in free-flowing, creative ways that foster new approaches to problems” (140). The Click community helps foster creativity.Many of the verbatim quotes used in this article are taken from the www.breastcancerclick.com.au (Click) website. Instead of identifying a speaker with a personal attribution the term “Clicker” is used, and then qualified as a Clicker with breast cancer (BC) to differentiate the author from a Clicker who supports someone with breast cancer (Supporter). The Click website provides every member with an opportunity to express themselves and they often respond creatively to the challenges that confront them. The Chaos and Catastrophe of a Breast Cancer Diagnosis When a woman is first diagnosed with breast cancer, it is often as a result of her bi-annual mammogram. She expects a routine visit but is advised instead that she requires further investigation because abnormalities have been detected. This is not what she expected. Probably all previous mammograms have been normal. The personal catastrophe occurs when the woman receives a definitive diagnosis of breast cancer. Chaos is added to catastrophe as the patient and her family struggle to grasp the meaning of the diagnosis and the multiplicity of treatment options. For some, the diagnosis is quickly followed by another catastrophic event, the removal of one or both breasts. For others the catastrophe occurs by increments. This is evident in a member’s blog on the Click website,More surgery [...] dammit!!!!!!!!!! I just want this over NOW. The whole lot. I want my hair back, I want my working life back, I want the smile back on my man's face. I want ME back. I want to dance again. I want to have a conversation with friends that doesn't include my diagnosis or prognosis [...] short term, long term [...] any bloody term!!!! (Clicker BC) People with a breast cancer diagnosis do not always have an endpoint in sight, or an acceptable endpoint at all, and the chaos of treatment and recovery is focused on coping with the present and the next treatment on the horizon. This Clicker uses her blog to help her deal with the next stage of a seemingly interminable round of surgical and chemotherapeutic procedures which have thrown herself, her family, her friends and her work life into chaos. Other Clickers immediately responded to her angst with messages of support and understanding. Had this clicker not written a blog, she would not have received this support and consequently she may have coped less successfully with her treatment. Given the chaos and catastrophe inherent in a breast cancer diagnosis, what else can individuals do that makes a positive difference to their lives as they deal with the “treatment, wait, check” cycle that is the medical response to breast cancer? Creativity Arising from Chaos When people receive a life threatening diagnosis such as breast cancer, they sometimes choose to think outside the square, to do things a little differently, to change the way they relate to others, to learn a new art or craft or to take up a musical instrument. Being creative seems to provide distraction from the treatment, and may be something to look forward to when the treatment is over. Some choose to participate in a formal creative therapy program, others seek out a creative pursuit which they can do at home. For some women with a breast cancer diagnosis, joining the Click website is itself a creative act. Contributing to an online community with a common interest in BC which gives them unconditional support, such as Click, also provides them with new skills and allows other people to benefit from their advice and experience: Hi everyone. I know we all have different ways of dealing with our cancer. Mine has been to be more mindful of the wonders around me and savour every possible moment of joy. I have decided to start my own Blog to give myself a creative outlet and share my experiences. (Clicker BC) There may be a number of reasons for participating in an online community of people with breast cancer and their supporters. Whatever the motivation, it requires a person to think laterally and learn new skills in how to navigate and post to a website. A newbie member enters a relationship with people she hasn’t met. She can choose to create a new persona using an avatar, or simply devise a username which represents her online. Creativity, Click and Flow Susan Nesbit, an Associate Professor in the University of Manitoba’s occupational therapy department, was diagnosed with BC in 2000. She used “everyday creativity to maintain a good attitude and positive spirits” and refers to Csikszentmihalyi’s concept of “flow” to explain the gratifying experience which occurs when someone fully participates in an activity:that I am doing it for its own sake, and when I become so involved […] that I become spontaneous and almost automatic, I am experiencing flow. My energy flows smoothly, I feel relaxed, comfortable, energetic and totally absorbed, losing track of time. (Nesbit 63) Richards (489) describes creativity as having two conditions: one is originality and the other is meaningfulness. She argues that everyday creativity “in the multitudinous activities of day-to-day life […] has been conceptualised as a survival capability” (489). Click allows members to share this everyday creativity, inspiring a creative response in others. One Clicker (BC), who produces handmade cards at home, was inspired to hold a Skype card-making education session for rural and remote people (with and without BC).Today is a day of craft for me. I held my first remote workshop […] and it was a huge success. Just made a couple of Father's Day cards for a customer and decided to share some of my work with you all. I'd love you to take a peek at my album [...] doing what I love to do was and is my therapy to get me through each new crisis xxx. (Clicker BC) It seems this Clicker first achieved flow through the act of making cards for her own pleasure and then maintained that flow through the planning and execution of an online card making class, which was a great success. She found something that helped her to take control of her life and to live more fully and at the same time gave others the opportunity to do the same. The success of this session might inspire this Clicker to conduct more sessions for others, while those attending the session who may be battling a serious illness, might also achieve flow through absorption in the card-making process, then maintain flow through the positive responses they receive from recipients of these cards. Ripples in this online creative space reach out towards a widening pool of card makers, assisting them to cope with chaotic occurrences. Creative Therapy and Breast Cancer Some women may choose to participate in formal creative therapy programmes such as art therapy to help them deal with their cancer treatment. In general more women than men with cancer choose to use this creative response to help them cope (Geue et al. 168). This intervention when used with breast cancer patients has been shown to enhance psychological well-being by decreasing negative emotional states and enhancing positive ones (Puig et al. 224). For example, music therapy with a group of BC patients waiting for a chemotherapy cycle appeared to directly reduce patients’ anxiety and physiological arousal, while enhancing their sense of wellbeing and control (Bulfone et al. 241). Blogging and Breast Cancer The creative pursuit may already be part of woman’s “normal” or pre-diagnosis life, or may be identified and pursued as a result of the diagnosis and used as informal therapy to keep the chaos at bay, for example through joining a support website and blogging. Orgad’s research shows that when women write about their breast cancer story, “storytelling” online, it helps them cope with their disease. “The act of writing is seen as a crucial affirmation of living, a statement against fearfulness, invisibility and silence” (Lord qtd in. Orgad 67). The new ideas and direction for these women’s creativity may also be used to vent their feelings and to gain perspective on their breast cancer journey, or the story may be written to help others facing a similar journey. As evidenced by the collection of blogs at breastcancerblogs.org it seems a number of women find blogs offer a creative response to their breast cancer journey. The BC blogosphere is a vibrant record of resistance to the disease. Click members are encouraged to blog, and are given space on the site to do so, with full privacy if they choose. A study conducted by Chung and Kim (304) showed those cancer patients and their companions found blogging activity to be helpful in emotion management and for information sharing. The Clickers are also encouraged to complete a SWEE in their blog. SWEE stands for “structured written emotional expression” where a person writes about their breast cancer journey for 10-15 minutes each day for three to five days in a row. The Clicker has the opportunity to creatively express their positive and negative feelings about their breast cancer diagnosis. Research shows that writing a SWEE can be good for both physical and emotional health (Pennebaker 540; Lieberman, Morton and Goldstein 859; Butcher and Buckwalter 114; Stanton et al. 4165; Low, Stanton and Danoff-Burg 187). One Click member, the author of the Paw Paw Salad blog, received a top blog award from the breastcancerblogs website. She writes about her life with breast cancer and the stress of not knowing when or if she will ever be free of the disease. She is positive, however, about the Tamoxifen tablet she must take for another five years or more. She tries to only let the word “cancer” briefly enter her mind, once a day, when she takes her pill and to carry on as normal the rest of the time. On returning home from a camping trip, which she also described in her blog, she noted that her cancer medication bottle was looking battered and dirty.And for the first time, the sight of it made me smile. I've decided that this is just the way my Tamoxifen bottle should look. It’s not a bottle to be kept pristine in a medicine cabinet—I want it to be tossed into suitcases, kept cold in dust-covered eskies, dropped on the floor in the morning flurry. I'm hoping that my daily reminder of cancer will, as often as possible, be washed down with camp-stove coffee. And I’m thinking that the last pill of each year’s prescription demands a champagne and strawberry chaser (Paw Paw Salad). This post demonstrates the blogger’s ability to perceive and describe BC paraphernalia differently, and she uses this perspective to bolster her resilience in the face of the ongoing BC chaos in her life. Some Clickers express ambivalence towards taking Tamoxifen, a hormone based chemotherapeutic agent, because of its potentially deleterious side effects on their everyday sense of wellbeing. This blog entry may give them a new perspective on life, in spite of the possible side effects of the drug, and encourage them to celebrate the end of each year of taking the pill as one step towards being free of cancer. The fact that the writer can go camping while taking the Tamoxifen pill also demonstrates to others that life doesn’t have to stop. Mammoirs Some people with a BC diagnosis (non-Click members) have gone on to write what is affectionately called a “mammoir” a book which recounts their breast cancer journey or provides advice and information for those newly diagnosed with breast cancer. This is the term applied by Clickers even to established works of literature, such as Professor Brenda Walker’s award-winning “mammoir,” Reading by Moonlight: How Books Saved a Life. The book describes how Walker took refuge from the chaos of her breast cancer diagnosis in the books she’d always loved. Her experience of chaos prompted her to turn towards the creativity of others, which in turn triggered renewed creativity in the form of her memoir. Conclusion A diagnosis of breast cancer is for most women, a catastrophe. The newly diagnosed person is aware that this diagnosis may well be followed quite quickly by a mastectomy. Together with adjunct treatments, such as chemotherapy and/or radiotherapy, this causes chaos within the woman’s life, family and friendship networks. Each woman and her supporters deal with the catastrophe and ensuing chaos in their own individual creative way. Creative expressions include blogs, where women can tell their story; poetry, such as haikus and free verse; and simple venting of feelings about diagnosis and treatment. The SWEE technique seems to indicate that written engagement helps people cope with their diagnosis and illness. Attendance at art or music therapy sessions has been shown to be therapeutic and “mammoirs” have been written to help others to avoid the pitfalls of the health system or to deal with treatment and its side-effects. Both informal and formal or organised creative therapy appears to have positive psychological effects on the woman with breast cancer. Whether each individual with BC achieved flow, as described by Csikszentmihalyi, is not known, but it appears from the Click community that many do use everyday creative acts to help them deal with the ongoing chaos of their diagnosis and treatment. The Click was created to provide a blank canvas for those with breast cancer and their supporters to reach out to others in a similar situation. Through allowing people to respond creatively and to have those creative responses validated, this reaching out often also involves reaching in—and harnessing creativity. ReferencesAustralian Institute of Health and Welfare and Cancer Australia, 2012, Breast Cancer in Australia: An Overview, Cancer Series 71. CAN 67. Canberra: AIHW.Blog Nation. “breastcancerblogs.org.”2011-2012. 11 Mar. 2013 ‹http://www.breastcancerblogs.org/›. Breast Cancer Click. Breast Cancer Care WA. 2013. 6 Mar. 2013 ‹http://www.breastcancerclick.com.au›. Bulfone, Teresa, et al. "Effectiveness of Music Therapy for Anxiety Reduction in Women with Breast Cancer in Chemotherapy Treatment." Holistic Nursing Practice 23.4 (2009): 238-242. Butcher, Howard Karl, and K. Buckwalter. "Exasperations as Blessings: Meaning-Making and the Caregiving Experience." Journal of Aging and Identity 7.2 (2002): 113-132. Chung, Deborah S., and Sujin Kim. "Blogging Activity among Cancer Patients and Their Companions: Uses, Gratifications, and Predictors of Outcomes." Journal of the American Society for Information Science and Technology 59.2 (2007): 297-306. Csikszentmihalyi, Mihaly. Flow: The Psychology of Optimal Experience. New York: Harper and Row, 1990. Geue, Kristina, et al. "An Overview of Art Therapy Interventions for Cancer Patients and the Results of Research." Complementary Therapies in Medicine 18.3 (2010): 160-170. Lieberman, Morton A., and Benjamin A. Goldstein. "Self-Help On-Line: An Outcome Evaluation of Breast Cancer Bulletin Boards." Journal of Health Psychology 10.6 (2005): 855-862. Low, Carissa A., Annette L. Stanton, and Sharon Danoff-Burg. "Expressive Disclosure and Benefit Finding among Breast Cancer Patients: Mechanisms for Positive Health Effects." Health Psychology 25.2 (2006): 181-89. Nesbit, Susan G. "Using Creativity to Experience Flow on My Journey with Breast Cancer." Occupational Therapy in Mental Health 22.2 (2006): 61-79. Orgad, Shani. Storytelling Online: Talking Breast Cancer on the Internet. NY: Peter Lang, 2005. “Jagged Little Pill.” Paw Paw Salad. 16 Oct. 2012. 11 Mar. 2013. ‹http://www.paw-paw-salad.com/›. Pennebaker, J. "Putting Stress into Words: Health, Linguistic, and Therapeutic Implications." Behaviour Research and Therapy 31.6 (1993): 539-548. Puig, Ana, et al. "The Efficacy of Creative Arts Therapies to Enhance Emotional Expression, Spirituality, and Psychological Well-Being of Newly Diagnosed Stage I and Stage II Breast Cancer Patients: A Preliminary Study." The Arts in Psychotherapy 33.3 (2006): 218-228. Richards, Ruth. “When Illness Yields Creativity.” Eminent Creativity, Everyday Creativity and Health. Eds. Mark Runco and Ruth Richards. Greenwich: Ablex, 1997. 485-540. Stanton, Annette L, et al. "Randomized, Controlled Trial of Written Emotional Expression and Benefit Finding in Breast Cancer Patients." Journal of Clinical Oncology 20.20 (2002): 4160-4168. Wenger, Etienne, and William Snyder. "Communities of Practice: The Organizational Frontier.” Harvard Business Review 78.1 (2000): 139-146. Walker, Brenda. Reading by Moonlight: How Books Saved a Life. Australia: Penguin, 2010. Acknowledgements A special thanks to all the people, women and men, who have shared their lives with the research team via the Breast Cancer Click website. Breast Cancer Care WA, our ARC Linkage Project industry partner.

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. 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The femme fatale of film noir has come to be regarded as an expression or symptom of male paranoia about the shifting dynamics of gendered power relations in patriarchal Western culture. This theoretical perspective is influenced by Freudian psychoanalytic theory, which, according to philosopher Paul Ricoeur, is grounded in the “School of Suspicion” because it sees consciousness as false, an illusion shrouding darker, disturbing truths (Ricoeur 33). However, while the femme fatale has become firmly established as a subject of suspicion, her male incarnation, the homme fatal, has generally been overlooked and any research that has been done on the figure to date has attempted to align him with the same latent anxieties as those underpinning the femme fatale. I will explore the validity of this assumption by examining the neo-noir films Mr Brooks (Bruce A. Evans, 2007) and The Killer Inside Me (Michael Winterbottom, 2010). Earl Brooks (Kevin Costner), the eponymous character in Mr Brooks, is a husband, father, extremely wealthy and successful businessman, philanthropist, and Portland Chamber of Commerce man of the year. But this homme fatal character is also a “deadly man” who has a powerful addiction to serial murder. On the one hand Earl enjoys killing immensely, but the rational, logical part of his mind tells him that he should stop before he gets caught. This creates an internal battle which is played out on screen, with these two sides of Earl’s psyche portrayed by two different people: realistic Earl and reckless, indulgent Marshall (William Hurt). In The Killer Inside Me, Deputy Sheriff and homme fatal Lou Ford (Casey Affleck) narrates the tale of how he came to be a brutal and sadistic serial killer, offering a variety of psychoanalytically grounded reasons and excuses for his despicable behaviour that ultimately leave the audience no more enlightened about his state of mind at the end of the film than at the beginning. I will argue that these figures are problematic within the context of Ricoeur’s theory of suspicion and that the self-reflexive insight and knowledge of Freudian theory depicted by these hommes fatals suggests that the construct cannot be read merely as a male incarnation of the femme fatale. Rather than being a subject or object of paranoid expression, I contend that the homme fatal is instead a catalyst for it. Psychoanalysis and the School of SuspicionThe premise of Freudian theory is that our consciousness is just the surface of our mental apparatus, and that hidden underneath in the unconscious part of our mind is a vast body of other material such as fears and desires that we have repressed because they are too disturbing for the conscious mind to contend with. Although we are unaware of these buried emotions they still impact upon our lives, surfacing in the form of neurotic symptoms (Freud 357–58). For Freud, the latent content of the psyche can be brought to the fore through psychoanalysis and by accessing and understanding unpalatable truths, the manifest symptoms they create can be alleviated (358). Thus, for Ricoeur psychoanalysis functions as a “demystification of meaning” (32) because it seeks to explain irrational symptoms. Ricoeur argues that Freud and fellow theorists Karl Marx and Friedrich Nietzsche are “masters of suspicion” (35) because of their common view of consciousness as false, opening the path for critical interpretation as an “exercise of suspicion” (33). However, suspicious interpretation is not just a practice for mental health practitioners and philosophers. It also has an established history as a method for exploring the relationship between socio-cultural anxieties and their expression in film and popular culture. According to literary theorist Rita Felski, the popularity of the use of psychoanalysis to study culture is partly inspired by the deeply ingrained and taken-for-granted nature of Freudian schemata (5), but a suspicious analysis also brings with it a form of substantive pleasure: “a sense of prowess in the exercise of ingenious interpretation, the satisfying economy and elegance of explanatory patterns; the gratifying charge of inciting surprise or admiration in fellow readers” (Felski 18). In film theory psychoanalysis is a well-recognised way of exploring underlying socio-cultural fears and anxieties that manifest on screen through visual and narrative depictions. The Femme Fatale and SuspicionThe femme fatale of film noir is a popular subject for suspicious interpretation by feminist film scholars including Mary Ann Doane, Elisabeth Bronfen, Pam Cook, and Kate Stables. Her beautiful, powerfully seductive exterior juxtaposed with a cold, cunning, and ruthless interior has earned the femme fatale a reputation as a manifestation of male fears about female sexuality and feminism (Doane 3). As Bronfen asserts: “One could speak of her as a male fantasy, articulating both fascination for the sexually aggressive woman, as well as anxieties about female domination” (106). In classic film noir of the 1940s and 1950s the femme fatale is generally considered to represent a projection of paranoid male fears over increased economic and sexual independence of women generated by World War II (Cook 70). Similarly, in neo-noir productions such as Basic Instinct (Paul Verhoeven, 1992) and The Last Seduction (John Dahl, 1994), the femme fatale is seen to function as an expression of anxiety over the postmodern collapse of traditional roles governing sexual difference occasioned by second-wave feminist movements, along with an increased presence of women in the public sphere (Stables 167). For example, in both Basic Instinct and The Last Seduction the femmes fatales are successful businesswomen who are also ruthless killers with an insatiable appetite for sex, wealth, and power. The Homme FatalWhile the femme fatale has been prowling around the dark alleys of noir, another deadly creature, the homme fatal, has also been skulking in the cinematic landscape. He can be found in early thrillers such as Alfred Hitchcock’s 1941 classic Suspicion, George Cukor’s Gaslight (1944), Experiment Perilous (Jacques Tourner, 1944), and A Kiss Before Dying (Gerd Oswald, 1956). He can also be located in many neo-noir thrillers including Blue Steel (Kathryn Bigelow, 1990), Internal Affairs (Mike Figgis, 1990), Guilty as Sin (Sidney Lumet, 1993), In The Cut (Jane Campion, 2003), Twisted (Phillip Kaufman, 2004), Taking Lives (J.D. Caruso, 2004), as well as Mr Brooks and The Killer Inside Me. One of the few scholars to examine the homme fatal from a psychoanalytic perspective is Margaret Cohen. In her paper “The ‘Homme Fatal,’ the Phallic Father, and the New Man” Cohen explores breakdown of gender divisions to emerge in neo-noir thrillers of the 1980s and 1990s, which saw a popular movement towards films featuring a female investigator pitted against a deadly male (for example, Internal Affairs, Blue Steel, and Guilty as Sin). Focusing on Internal Affairs, Cohen contends that corrupt cop and homme fatal Dennis Peck (Richard Gere) is a “larger-than-life alternative to the femme fatale” (113). Like the deadly woman, Peck has no morals, he is obsessed with power and wealth, and has no qualms about employing his sex appeal or collapsing sexual intimacy into business in order to get what he wants (Cohen 115–16). According to Cohen, just as the femme fatale is a manifestation of male paranoia about social transformations of gendered power, Internal Affairs crystallises male anxieties about the transformations in gender roles and the place of the new man in 1980s and 1990s postmodern culture (114). However, while hommes fatals such as Dennis Peck can be aligned with the femme fatale as a subject or object of psychoanalytic interpretation regarding repressed fears, other hommes fatals subvert such an analysis through their predisposed insight into psychoanalytic theory and suspicious interpretation. Aside from the films Mr Brooks and The Killer Inside Me, which I will explore in detail in the coming section, the hommes fatals in Gaslight and Experiment Perilous display a knowledge of Freudian theory, using it to convince their female victims that they are insane, and in Taking Lives the homme fatal uses his psychological prowess to fool a female FBI behavioural specialist assigned to profile him. The psychoanalytical insight depicted by these deadly men is something the femme fatale is not ordinarily privy to (with the exception of Catherine Trammell [Sharon Stone] in Basic Instinct, who has a degree in psychology). This suggests that the homme fatal is not simply a male incarnation of the female archetype, but rather a figure with a certain insight into latent socio-cultural anxieties who deliberately sabotages suspicious interpretation. Pleasure, Subversion, and the Homme Fatal Part of the pleasure of a suspicious analysis of a text is that it allows the critical theorist to act as a detective—“solving mysteries, nailing down answers, piecing together a coherent narrative, explaining away ambiguity through interpretation of clues” (Felski 13). However, in The Killer Inside Me, homme fatal Lou Ford subverts this process, using his knowledge of psychoanalysis in a way that prevents him from being subject to suspicious interpretation. In her paper on the source text from which Winterbottom’s film was adapted, “Being’s Wound: (Un) Explaining Evil in Jim Thompson’s The Killer Inside Me,” literary theorist Dorothy Clark argues that “if Lou Ford provides a Grand Narrative, it is one in which he uses the appearance/reality outer/inner world motif to pitch to us a too-apparent Freudian psychoanalytic explanation for his actions” (54). A suspicious reading of The Killer Inside Me is disrupted and subverted by Lou’s employment of a psychoanalytic model to explain what he calls “the sickness.” By offering up a rational explanation for his otherwise irrational behaviour and grounding it in suspicion, Lou continually constructs and then deconstructs the narrative in such a way that it “conceals rather than reveals, continually eluding containment and definition” (Clark 59). According to Clark (51), what distinguishes The Killer Inside Me from the standard detective narrative is that rather than progressing from a state of enigma to one of knowledge, the story eludes knowledge, becoming increasingly complex and uncertain. Although Clark’s discussion focuses on the hard-boiled novel by Jim Thompson (1952), her observations about the character of Lou Ford are equally relevant to the 2010 neo-noir cinematic remake, which is a direct adaptation of the original novel. (Many classic films noir are reworkings of hard-boiled novels. For example, director Robert Montgomery’s 1947 film The Lady in the Lake was based on a novel originally written in 1943 by Raymond Chandler.) In the film The Killer Inside Me, as in the novel, Lou pragmatically detaches himself from his behaviour, and his dialogue creates a continuous state of puzzlement and perplexity that constantly undermines any attempt at understanding through interpretation. In Mr Brooks, any effort at a suspicious reading is equally well thwarted, but the strategy employed is the polar opposite to that used in The Killer Inside Me. In a more conventional “whodunit” narrative structure, Brooks, known as the “thumbprint killer,” might be presented as a mystery. The audience might be provided with the same clues and limited insights that Detective Atwood (Demi Moore) is given, embarking on the same journey of reconstruction, conjecture, and interpretation that she does. A picture might gradually emerge about the killer: his motivations, his rationale, what his fetishes and weak points are, and ultimately, who he is. Instead, the audience is presented not only with the identity of the killer, but the inner-most workings of his mind. According to psychoanalytic theorists, the psychical mechanism that cuts off unpleasant repressed material, blocking it from entering and disrupting the consciousness, is the ego. For Freud, the ego responds to the external world and is grounded in common sense, control, planning, and intellectual rationale (“Ego & Id” 363). However, the repressed can still communicate with the ego through the id. The psychical id is where the powerful pleasure principle reigns unrestricted; it is the primitive, infantile part of the mind in which immediate satisfaction is all that counts, despite the ego’s best attempts to “bring the influence of the external world to bear upon the id and its tendencies” (Freud, “Ego & Id” 363). For Freud, the psyche also contains a third element—the super-ego, a portion of the ego that sets itself over the rest of the ego, creating a tension that is felt consciously as a sense of guilt (Freud, “Ego & Super-Ego” 374). It is a part of Earl’s psyche that only surfaces when he realises that his daughter may have inherited the same killing impulses as him. In Mr Brooks, Marshall represents Earl’s id. He is like an evil clown, set up in opposition to the controlled, methodical, and sensible Earl, whose primary concern is that he might get caught. All Marshall wants to do is have “fun.” With pleasure his sole preoccupation, much of the film centres on the various levels of conflict between Earl and Marshall. Sometimes they are like best friends, laughing together, united in their pursuit of pleasure; at other times, when Earl tries to ignore Marshall or control him by attending Alcoholics Anonymous meetings (without revealing the nature of his own addiction), it becomes a battle of wills, with Marshall trying to undermine, goad, and torment Earl into giving in to his impulses. Early in the film Marshall’s persistence pays off when Earl breaks his two-year drought and surrenders to Marshall, indulging in the pure ecstasy of murder. Here, the play between the two characters clearly represents the psychical interaction between the ego and the id. This interplay provides the audience with seemingly transparent insight into the latent mechanisms of Earl’s psyche, eluding enigma entirely and jumping straight into knowledge of the most intimate kind. One cannot speculate about Earl’s latent thoughts because they are there, laid bare on the screen. Further, Earl makes no apologies for his behaviour. He kills because he likes and enjoys it, period, a fact that Marshall is continually reminding him of. His desire to stop is motivated only by the logical, rational, common sense part of his psyche, his ego. Despite the two different approaches to the subject of the killer inside them, both Earl and Lou manage to successfully subvert a suspicious analysis and with it the pleasure to be found in such an investigation. Lou does so by playing games with the audience’s assumptions that there is an underlying reason for his behaviour, expending a great deal of energy providing psychoanalytically grounded excuses for it: he is the victim of childhood sexual trauma, a victim of elemental human passion, he has dementia praecox, he has paranoid schizophrenia, he wants revenge, he is a flower misplaced and wrongly labelled a weed, or perhaps he is just cold-blooded and as smart as hell (Clark 46–49). Mr Brooks, on the other hand, cuts right through all the diversionary tactics and gets straight to the core of what really motivates Earl—a raw instinctual desire for pleasure. Conclusion In feminist film theory (and Western culture in general) suspicious interpretation has become a deeply ingrained and almost taken-for-granted way of understanding meaning. Part of the popularity of a suspicious analysis is the pleasure readers/viewers/critics find in the mystery-solving process of interpretation and the chance to act as detective. However, the neo-noir thrillers Mr Brooks and The Killer Inside Me exhibit a self-reflexive insight into Freudian theory, the school of suspicion, and the assumptions that accompany it, using that knowledge to deliberately subvert the opportunity for suspicious analysis. Lou plays guessing games with the audience’s desire to solve the riddle of his psyche, generating his own pleasure in the process. In Mr Brooks the audience is denied the opportunity for speculation when it comes to Earl’s mind because the innermost workings of it are laid bare for all to see, leaving no room for interpretation. The only pleasure to be had is Earl’s—the raw and brutal pleasure of killing. In patriarchal Western society the femme fatale is considered to be symptomatic of male paranoia surrounding the breakdown of gender difference and power relations. While, as Cohen suggests, this may also be true of the homme fatal, the figure’s propensity to undermine understanding through psychoanalysis suggests that as a male manifestation of male paranoia the construct of the homme fatal is an insightful catalyst of fear rather than a subject or object of it. ReferencesA Kiss Before Dying. Dir. Gerd Oswald, 1956.Blue Steel. Dir. Kathryn Bigelow, 1990.Bronfen, Elisabeth. “Femme Fatale: Negotiations of Tragic Desire.” New Literary History. 35.1 (2004): 103–16. Clark, Dorothy. “Being’s Wound: (Un) Explaining Evil in Jim Thompson’s The Killer Inside Me.” The Journal of Popular Culture. 42.1 (2009): 49–65. Cohen, Margaret. “The ‘Homme Fatal,’ the Phallic Father, and the New Man.” Cultural Critique. 23 (1992–93): 111–36. Copjec, Joan. Shades of Noir: A Reader. New York: Verso, 1993. Doane, Mary Ann. Femme Fatales: Feminism, Film Theory, Psychoanalysis. New York: Routledge, 1991. Experiment Perilous. Dir. Jacques Tourner. RKO, 1944.Felski, Rita. “Suspicious Minds.” Poetics Today. 32.2 (2011) 215–34. Freud, Sigmund. On Metapsychology: The Theory of Psychoanalysis, Beyond the Pleasure Principle, The Ego and the Id and Other Works. London: Penguin, 1991. Gaslight. Dir. George Cukor. MGM, 1944.Guilty as Sin. Dir. Sidney Lumet. Hollywood Pictures, 1993.Internal Affairs. Dir. Mike Figgis. Paramount Pictures, 1990.In The Cut. Dir. Jane Campion. Screen Gems / Columbia Pictures, 2003.Killer Inside Me, The. Dir. Michael Winterbottom. Icon, 2010.Mr Brooks. Dir. Bruce A. Evans. Metro – Goldwyn – Mayer, 2007.Ricoeur, Paul. Freud and Philosophy: An Essay on Interpretation. New Haven: Yale UP, 1970. Spicer, Andrew. Film Noir. Harlow: Pearson Education, 2002. Suspicion. Dir. Alfred Hitchcock. RKO, 1941.Taking Lives. Dir. D. J. Caruso. Warner Brothers, 2004.Thompson, Jim. The Killer Inside Me. London: Orion, 2006.

The paper discusses mobility in the context of displacement. How is the mobile phone appropriated by refugees in immigration detention? What does the mobile phone, and indeed, mobility, signify in an Australian policy landscape of mandatory detention of asylum seekers and formerly prohibited access to mobile phones for detainees inside immigration detention centres? What does this intimate about the perceived dangers of “new” and mobile media? The author’s preliminary research with refugees in Australian immigration detention centres compares policy and practice. Firstly, it interrogates the unwritten policies regulating refugees’ access to media technologies when incarcerated in immigration detention. As there is no written policy on technology access and practices vary across immigration detention centres, the information in this paper has been given by detainees and has not been verified by the management of detention centres. The paper suggests that the utopian promises of mobile media echo those made about cyberspace in the 1990s. Furthermore, the residual effects of such rhetoric have infiltrated government policy in terms of perceiving mobile media as dangerous when adopted by marginalised groups such as refugees. Secondly, the research examines how and why the mobile phone has been adopted by immigration detainees despite their former prohibition. It explores the ways in which refugees practice an imagined mobility through media whilst in detention, and finds that this is critical to sustaining connection with their imagined communities. Why Refugees? In the context of increased forced migration of people due to circumstances such as political instability, war, natural disaster and famine; it is necessary to better understand how refugees mobilise and organise in situations of displacement. As new technologies encourage the capacity for borderlessness, such advantages also have to be contrasted with the potential dangers of spontaneous border crossings. The study of the behaviour and practices of refugees in relation to communication technologies offers an insight into the efficacy of immigration detention policy in filtering movement and interaction, both physical and virtual, between Australia and other countries. Although the study of refugees is a discipline in its own right, there has been minimal examination of how they appropriate technology, particularly that which facilitates and complements their mobility, to maintain connections with their diasporic networks while in situations of displacement. The studies that have been undertaken concentrate on the use of technology by refugees living in the wider community (see Glazebrook, McIver Jr. and Prokosch; Howard and Owens), rather than in the context of detention. In previous research of diasporas within the discipline of Cultural Studies, technology has been regarded as vital to subcultures and minority groups. Technology has been the tool by which such communities respond to their structural conditions (see Cunningham; Hall; Halleck). Such investigations have concentrated on the intersection of class, gender and ethnicity and how they inscribe meanings to specific technologies, which in turn, become intrinsic to the identities of the groups and communities. The research extends the work that has been done within Cultural Studies by similarly focusing on a marginalised group, refugees, and their participation in particular technologies. A review of literature across refugee studies, diaspora studies and technology studies has shown that: The study of technology use by refugees has had minimal investigation The study of diasporas has rarely included refugees The study of communities and communication practices which surround particular technologies has concentrated on groups other than refugees The escalation of issues of asylum and border control in public discourse warrant more knowledge about refugees and their networks of communication beyond the boundaries of detention and Australia The notion of “networks” refers to people, technologies, processes and practices that form the relationships between refugees in institutionalised immigration detention and the outside world. The Australian Immigration Detention Context Between 1992 and 1994, Australian law moved from permitting (but not enforcing) limited detention of asylum seekers, to a blanket policy of mandatory detention (HREOC) which, at one point, had up to 12,000 individuals in detention (Castan Centre for Human Rights Law). The detention context is particularly relevant to Australia, because its policy of mandatory detention means that refugees have restricted contact with the world outside of the detention centre. In 2005, the Migration Amendment (Detention Arrangements) Bill allowed detained families with children to live in community detention, that is, in residential accommodation outside of an immigration detention centre. Although community detention carries with it specific conditions, families are unaccompanied and have more freedom of movement. This paper discusses the author’s preliminary work with refugees in immigration detention, prior to the introduction of community detention. The research sought to investigate how asylum seekers use technology to sustain connections with their virtual communities in situations of displacement. Specifically, it explored how technology is appropriated to mediate communication in the context of institutionalised detention. The key research questions addressed by the research were: what kinds of technologies are available to refugees? How are these used? How are their benefits and limitations perceived? What, if any, kinds of social networks surround these technologies? How are relationships of power surrounding these technologies negotiated? Can technology assist refugees in sustaining connections with their communities of choice and reducing their sense of isolation? Can technology play a role in reducing the well-documented effects of this incarceration by providing mediated social interaction? What are the implications for policy, especially in relation to permitted technologies and surveillance of communication practices? Access to informants was gained by working with a refugee community advocacy group, which has established links with refugees in detention and experience in dealing with the management of detention centres. One such group is ChilOut, which organises visitor programs to immigration detention centres. This affiliation was important in gaining access to, and trust of, detainees who were willing to participate in the research. It presented opportunities to interact with detainees on a social basis. Semi-structured interviews with the research subjects were conducted to ascertain the strategies and resources currently utilised to counter the effects of mandatory detention. In 2005, detainees had access to a range of technology which can be broadly termed “old media”, while access to “new media” – such as the Internet and mobile phones – are prohibited. At the time of printing, detainees reported that mobile phones without cameras were only recently permitted. Detainees have access to pay phones inside the centre. Visitors are allowed to give detainees phone cards so they can use the pay phones without charge or the need for change. In addition to pay phones, detainees are provided with access to a fax and photocopier, which are generally used to liaise with and send relevant documentation to lawyers. There is distrust of using the fax machine at the detention centre because it is in a management office area and the detainees require permission to use it. It means the guards can read the faxes that are sent, as well as those that are received before notifying the detainees that they have received one. Detainees also have television, videos, DVDs and newspapers, so there is the possibility of feeling like part of an imagined community (Anderson) through these media. There are computers available, but no Internet access. Some of the children load computer games on them to play, others have Playstation in their rooms. It is noteworthy that the only technology to which detainees have access and which facilitates real-time person-to-person interaction is the telephone. The phone offers the opportunity for direct contact with the outside world without the visual and other sensory realities of detention. The telephone is able to mask the extent of imprisonment as it does not show the barbed razor wire surrounding the compound. Yet detainees were not permitted to have mobile phones for a long time. Thus, the key question remains: why were they deprived of access to mobile phones while allowed access to pay phones and landlines? What does this suggest about the perceived dangers of mobile media and the resonance of last century’s techno-utopian discourses? Given that detainees were only given access to “old media”, it seems that this tired but resolutely upbeat rhetoric about new technology which celebrates it as inherently liberating actually inflected policies determining the kinds of technologies to which detainees have access. It confirms the pessimistic assertions of media theorists such as Schiller and Mosco, that new technologies further alienate disadvantaged groups. As the Australian government attempts to regulate the physical movement of people across its borders, mantras of the dot.com era such as “everyone is a free agent” (Kumar 77) appear to undermine this agenda. The assumptions of liberty and democracy embedded in this “free agency” are implicit in policies that denied refugees access to “new media” such as the Internet and mobile phones. The “liberating” nature of such technology was regarded as unsafe in the hands of refugees, whose freedom of movement is institutionally contained by the Australian government through mandatory detention. The physical movement of refugees, as well as the agency and freedom with which they can claim asylum in a country, is actively discouraged through immigration detention policy and limitations on access to technology. The promise of self-expression afforded by mobile media seemed antithetical to the prejudicial administration of refugees, which is premised upon a distrust of their claims of identity and asylum. Subsequently, their use of mobile technology was also assumed to be suspect and therefore had to be restricted. Detained refugees serve as a reminder of the parameters of upbeat discourses about new technology. That is, the utopian possibilities of mobile media appear to be conditional such that its “power” can only be entrusted to certain groups. In policy terms, the mobile phone is a rich site of signification. Not only does the technology itself imply a way of being (that is free, mobile, always accessible and always able to access), but it also connotes an ideal type of user, one that is appropriate and deserving of such technology. It seems that refugees are not entitled to their mobility and, therefore, do not have rights to media that is considered to facilitate such mobility, in spite of their detention. Furthermore, there is a suggested dichotomy in the government’s classification of the technologies to which refugees have access. The fact of detention means refugees are surrounded by technology, held captive by it and are inevitably in close proximity to it. It is technology which is seen as antithetical to mobility and therefore could be described as “static”: phones, faxes, photocopiers, television, video – all of which may be characterised as “old media”. The binary opposite of such technology is that which can be regarded as mobile or new or interactive media; that which resonates with the residual effects of 1990s techno-utopian rhetoric; and could be considered as threatening in the hands of those who have physically made unauthorised border crossings. However, prior investigations of “mobile” technologies, demonstrates that such dualisms are flawed as the lowest technologies also have the capacity to facilitate mobility. Examples include Paul Gilroy’s work on the Black Atlantic, which notes that books and records have been vital in carrying oppositional ideologies and philosophies across the black diaspora. Within Asian diasporas, the exchange of video letters and taped Bollywood movies have been interpreted as forms of localised challenges to the centralised power of the broadcast media industries (Ang; Gillespie). These economies of exchange as facilitated by older forms of mobile media have been studied in relation to issues of migration and marginalisation. Given that refugees are also affected by such issues, their mobile media practices are a sobering reminder that mobility is not necessarily hi-tech nor confined to the realms of the affluent, educated and socio-economically advantaged. Rather, mobility can be a tenuous state of being displaced and itinerant, with technology adopted to manage and adapt to its challenges. The Mobile Media Practices of Detained Refugees The initial findings from the fieldwork indicate that for refugees, the mobile phone is not a technology of choice but instead, a technology of necessity and survival. Every technology that is available to them is used to sustain connection to their localized and globalised networks. The restriction to their physical movement of detainees is compensated through use of technology which allows any sort of interaction and communication. Being part of a technologically-mediated community appears to minimise the marginalisation and isolation they experience. Such feelings of dislocation have been well-documented in studies of the impact of incarceration on the mental health of refugees (see Mares and Jureidini; RANZCP; Hodes). It seems that the telephone and fax are the mainstays of their communication networks. However, such technologies are closely monitored, as landline phone calls can be traced or even tapped, and faxes have to be sent from an office manned by guards. An experienced visitor to detention centres commented that “most” detainees had mobile phones and when they were contraband, guards knew about them but generally ignored their use by detainees. Only mobile phones offer the potential for communication to be free from the surveillance by detention centres staff. The ways in which mobile phones are used by detainees is decidedly lo-tech, for example, for communication with family where use of a landline is impractical. One of the detainees said that he speaks to his wife and children on the centre pay phone every few days. However, the call costs are expensive as his family only has a mobile phone, not a landline, at their place of residence. For them to call him is also expensive and awkward, because they have to call the pay phone and if somebody answers, they have then to locate him somewhere within the compound. Thus, the connections between the detainees and their loved ones are very fragile in that they are almost totally dependent on the phone to maintain these relationships. In this instance, the mobile phone offers another means for managing the tenuous nature of these ties. The mobile phone, particularly SMS technology, offers a suitable alternative as the detainee can communicate with his family cheaply and quickly. It compensates for the constraints of the pay phone. The informal interactions afforded by the mobile phone also extend beyond family members of detainees to their supporters and advocates. Likewise, the mobile phone complements the communication practices facilitated through permitted technologies. For example, when detainees are liaising with the Department of Immigration (DIMIA), they will ask advice from the regular visitors to the immigration detention centre who come from an array of organizations such as churches, refugee advocacy groups, law firms and health organizations. Visitors generally offer whatever assistance they can by obtaining necessary forms from the department, searching the Internet, undertaking letter writing campaigns, and lobbying government ministers. Something worked in amongst all the network activity that took place over the course of this week. As promised to the family, I scoured the DIMIA web site for a form for applying under Section 417. While there didn’t seem to be an official form, I used the opportunity to research the section of the Migration Act. Googling turned up a 12 page “guide to section 417 applications” written by a barrister, which I printed out and faxed to them. So as to ensure that the family received the fax, I SMS-ed them to let them know a fax was on its way and how many pages to expect. They responded to me by fax, saying that they had been notified that they too were going to be released into community detention in the coming weeks. (Extract from fieldwork diary) The mobile phone serves the function of anticipating and verifying communications which may potentially be surveilled by staff of detention centres. Where detainees may not trust that they are being given all the letters or faxes that have been sent to them, the mobile phone enables a degree of privacy so that they at least know what to expect from their correspondents. Furthermore, it provides the opportunity for detainees to speak about matters related to their case for asylum that are regarded as too sensitive to risk being discussed in a public place such as on the centre pay phone. Often this involves seeking assistance with their application for asylum. He rang T on the centre pay phone and said that he would like to speak with me, but did not have my number. He didn’t have a pen and paper to jot down my details at the time, so he gave T his mobile number and asked her to pass it onto me, so I could ring him on it. When I rang, he had returned to his room where he could talk freely. He told me about the visit from the Commonwealth Ombudsman, who undertook to look into his case over the next couple of weeks. We talked about what would assist the Ombudsman in reviewing the case. I said I would write a letter or email in the first instance, and if he wanted other letters of support, I could circulate details of his case on the ChilOut newsletter. He said he didn’t want publicity at this stage. I offered to fax him a copy of my email, but he preferred that I give it to him in person as the fax machine in the office was too public and any documents received could be read. Again, the mobile seems to be the most appropriate technology for coordinating and organising privately away from centre surveillance… (Extract from fieldwork diary) Fear of breaches of confidentiality form only part of detainees’ desire for privacy from detention centre staff. There is also a need for private space away from other detainees as their imprisonment necessitates the constant use of communal facilities such as the pay phone. In addition to being used for its capacity for private communication, the mobile phone was also exploited as a broadcast technology by detained refugees. Text messages proved an effective way of providing brief updates to family and friends about the status of their case: 20 September 200510:24:07 Hi Linda. I am fine thank u. not news yet, I think they’ll come to see me soon, if I got news, I’ll let u know. Wish u have a good time. 15 October 200516:31:49 HI Linda, I was interview by Ombudsman yesterday, we talked about one hour and a half, it sound good…Thank u for yr concern 25 December 200520:26:54 Hi Linda. I am still in [detention centre]. No any news from Ombudsman, may be early next year. I am fine here, thanks. Tuesday 17 October 200613:44:41 Hi Linda…I transferd to [community] housing. Its much better here. How a u? takecare ur health, thanks. Thursday 16 November 200618:46:23 HI There is a good news to let u know I got the decision from that I won the FC case. Thus, for detained refugees, the mobile phone has been adopted for simple, lo-tech use. None of the respondents indicated a desire for a camera function on their mobile phones. However, one detainee did suggest that she would like to use a webcam to see and hear her child in China, whom she has not seen in eight years. While she did use the Internet for this purpose when she was on the “outside”, now she can only rely on weekly telephone conversations made from inside the detention centre. Conclusion What happens when technology is placed in the hands of those for whom it was never meant? It makes explicit what is often implied in studies of adoption of new technology, that the “utopian promise” is confined to a narrow socio-economic demographic: the advantaged, the affluent and the educated. Those who fall outside these perimeters are perceived as undeserving and untrustworthy of such technology. This is exemplified in the Australian government’s policy to deny refugees access to “new” and mobile media whilst being compulsorily detained. The decision to withhold mobile technology from mobile communities who are not so materially privileged is not only ironic but unwarranted in light of the empirical data. This has since been acknowledged by allowing detainees use of mobile phones. The mobile phone practices of detained refugees show that it is being used as a complementary and alternative technology, that is, to compensate for the inadequacies of the communication media allowed by detention centres. The mobile phone is exploited for the functions that permitted technologies do not offer: firstly, the ability to communicate with friends and family more immediately and effectively; secondly, the capacity to communicate privately with less probability of surveillance; thirdly, the opportunity to broadcast content one to many. In such communications, use of the mobile phone is simple and lo-tech: it is deployed for straightforward (but improved) interaction with detainees’ imagined communities which would otherwise be possible anyway through the “old” media technologies provided in detention. In practice, there was no evidence of the use of the hi-tech functions of mobile phones; nor was there any indication, as implied by policy, of the possible dangers that may ensue if such features of mobile media were available to detained refugees. Potentially, the research can impact on immigration detention policy, particularly in terms of reviewing the conditions under which technology is made available to refugees in institutionalised detention contexts. However, further research is required, especially a comparison of the former prohibited use of mobile media in immigration detention centres with the permitted use of these in community immigration detention. References Anderson, Benedict. Imagined Communities. 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London: Lawrence and Wishart, 1998. Halleck, Dee. “Watch Out Dick Tracy! Popular Video in the Wake of Exxon Valdez.” Technoculture. Eds. Constance Penley and Andrew Ross. Minneapolis: U of Minnesota P, 1991. Hodes, Matthew. “Three Key Issues for Young Refugees’ Mental Health.” Transcultural Psychiatry 39.2 (2002): 196-213. Howard, Ellen, and Christine Owens. “Using the Internet to Communicate with Immigrant/Refugee Communities about Health.” Poster presentation at JCDL ‘02, Portland, Oregon, 13-17 July 2002. Human Rights and Equal Opportunity Commission (HREOC). “A Last Resort?” Report on National Inquiry into Children in Immigration Detention. 26 July 2004. http://www.hreoc.gov.au/human_rights/children_detention/ submissions/castan.html>. Kumar, Amitava. “Temporary Access: The Indian H-1B Worker in the US.” Technicolor: Race, Technology and Everyday Life. Eds. Alondra Nelson and Thuy Linh Tu. New York: NYU P, 2001. Mares, Sarah, and Jon Jureidini. “Children and Families Referred from a Remote Immigration Detention Centre.” Forgotten Rights – Responding to the Crisis of Asylum Seeker Health Care: A National Summit. 12 Nov. 2003. McIver, William, and Arthur Prokosch. “Towards a Critical Approach to Examining the Digital Divide”. IEEE, 2002. Mosco, Vincent. Pushbutton Fantasies: Critical Perspectives in Videotex and Information Technology. Norwood: Ablex, 1982. Royal Australian and New Zealand College of Psychiatrists. “RANZCP Airs Deep Concern at the Mandatory Detention of Child Asylum Seekers.” Media release, 11 Nov. 2003. Schiller, Herbert. Information Inequality: The Deepening Social Crisis in America. London: Routledge, 1996. Citation reference for this article MLA Style Leung, Linda. "Mobility and Displacement: Refugees' Mobile Media Practices in Immigration Detention." M/C Journal 10.1 (2007). echo date('d M. Y'); ?> <http://journal.media-culture.org.au/0703/10-leung.php>. APA Style Leung, L. (Mar. 2007) "Mobility and Displacement: Refugees' Mobile Media Practices in Immigration Detention," M/C Journal, 10(1). Retrieved echo date('d M. Y'); ?> from <http://journal.media-culture.org.au/0703/10-leung.php>.

IntroductionJohn Berger provides a compelling analysis in Ways of Seeing on how we’ve been socialized through centuries of art to see women as objects and men as subjects. This way of seeing men and women is more than aesthetic choices but in fact shapes our ideologies of gender. As Berger asserts: “The art of the past no longer exists as it once did… In its place there is a language of images. What matters now is who uses that language for what purpose” (33).What happens when there are no historical images that represent your identity? How do others learn to see you? How do you learn to represent yourself? This article addresses the challenges that bisexuals face in constructing and contending with media representations of non-normative sexualities. As Berger suggests: “A people or class which is cut off from its own past is far less free to choose and to act as a people or class than one that has been able to situate itself in history” (33). This article seeks to apply Berger’s core concepts in Ways of Seeing studying representations of bisexuality in mainstream media. How bisexuality is represented, and therefore observed, shapes what can ultimately be culturally understood and recognized.This article explores how bisexuals use digital media to construct self-representations and brand a bisexual identity. Bisexual representations are particularly relevant to study as they are often rendered invisible by the cultural hegemony of monosexuality. Cultural norms ideologically shape the intelligibility of representation; bisexuality is often misinterpreted when read within the dominant binaries of heterosexuality and homosexuality in Western European culture. This work addresses how users adapt visual, textual, and hyperlinked information in online spaces to create representations that can be culturally recognized. Users want to be seen as bisexuals. The research for this article examined online social spaces created by and for bisexuals between 2013-2015, as well as mainstream media addressing bisexuality or bisexual characters. The social spaces studied included national and regional websites for bisexual organizations, blogs dedicated to bisexual issues and topics, and public bisexual groups on Facebook and Tumblr. Participant observation and semiotic analysis was employed to analyze how bisexual representation was discussed and performed. Learning to See Bisexuality Bisexuality is often constructed within the domain of medical and psychological classification systems as a sexual identity situated between one polarity or the other: between desiring men or desiring women as sexual partners or between being gay or being straight in sexual orientation, as most widely put forth by Alfred Kinsey in the 1950s (Kinsey et al., 1948; e.g., Blumstein, 1977; Diamond, 1993; Weinberg, 1995). This popularly held conception has a particular history that serves to reinforce the normative categories of heterosexuality and monosexuality.This history does not reflect bisexual’s accounts of their own experiences of what it means to be bisexual. Bisexuals in the spaces I study express their sexuality as fluid both in terms of gender (objects of desire do not have to identify as only male or female) as well as in terms of the lifespan (desire based on sex or gender does not have remain consistent throughout one’s life). As one participant remarked: “I think of bisexual as a different orientation from both homosexuals (who orient exclusively towards same-sex romance/sexuality) and heterosexuals (who orient exclusively toward opposite-sex romance/sexuality). Bisexuals seem to think about the world in a different way: a world of ‘AND’ rather than a world of ‘OR’.” Or as another participant noted: “I saw video a couple of months ago that described ‘bi’ as being attracted to ‘same and different sexed people.’ I considered my internal debate settled at that point. Yes, it is binary, but only in the broadest sense.”This data from my research is congruent with data from much larger studies that examined longitudinal psycho-social development of bisexual identities (Klein, 1978; Barker, 2007; Diamond, 2008). Individuals’ narratives of a more “fluid” identity suggest an emphasis at the individual level less about fluctuating between “two” possible types of sexual partners than about a dynamic, complex desire within a coherent self. Nevertheless, popular constructions of bisexuality in media continue to emphasize it within hegemonic monosexual ideologies.Heterosexual relationships are overwhelmingly the most dominant relationship type portrayed in media, and the second most portrayed relationship is homosexuality, or a serial monogamy towards only one gender. This pairing is not only conveying the dominant hegemonic norms of heterosexuality (and most often paired with serial monogamy as well), but it is equally and powerfully reproducing the hegemonic ideal of monosexuality. Monosexuality is the romantic or sexual attraction to members of one sex or gender group only. A monosexual person may identify as either heterosexual or homosexual, the key element being that their sexual or romantic attraction remains consistently directed towards one sex or gender group. In this way, we have all been socialized since childhood to value not only monogamy but monosexuality as well. However, current research on sexuality suggests that self-identified bisexuals are the largest group among non-heterosexuals. In 2011, Dr. Gary Gates, Research Director of the Williams Institute at UCLA School of Law, analyzed data collected from nine national health surveys from the USA, United Kindgdom, Canada, Australia and Norway to provide the most comprehensive statistics available to date on how many people self-identify as lesbian, gay, bisexual and transgender. While the population percentage of LGBT people varied by country, the ratio of lesbian, gay and bisexuals among LGBT people remained consistent, with self-identified bisexuals accounting for 40-60% of all LGBT populations regardless of country. This data is significant for challenging the popular assumption that bisexuals are a small minority among non-heterosexuals; indeed, this data indicates that non-monosexuals represent half of all non-heterosexuals. Yet we have learned to recognize monosexuality as dominant, normal and naturalized, even within LGBT representations. Conversely, we struggle to even recognize relationships that fall outside of this hegemonic norm. In essence, we lack ways of seeing bisexuals, pansexuals, omnisexuals, asexuals, and all queer-identified individuals who do not conform to monosexuality. We quite literally have not learned to see them, or—worse yet—learned how to not see them.Bisexual representations are particularly relevant to study as they are often rendered invisible in cultures that practice monogamy paired with hegemonic monosexuality. Members of bisexual spaces desire to achieve recognition but struggle to overcome bisexual erasure in their daily lives.Misrepresention: The Triad in Popular MediaWhen bisexuality is portrayed in media it is most commonly portrayed in a disingenuous manner where the bisexual is portrayed as being torn between potential lovers, on a pathway from straight to gay, or as a serial liar and cheater who cannot remain monogamous due to overwhelming attractions. Representations of bisexuals in media are infrequent, but those that are available too often follow these inaccurate stereotypes. By far the most common convention for representing bisexuality in visual media is the use of the triad: three people convey the (mis)representation of bisexuality as a sexuality in the “middle” of heterosexuality and homosexuality. For the purpose of this article, data analysis will be limited to print magazines for the sake of length and clarity.The 2014 New York Times Magazine article “The Scientific Quest to Prove Bisexuality Exists” (Denizet-Lewis) addresses the controversial nature of bisexuality. The cover image depicts a close-up of a man’s face, separated into two halves: in one half, a woman is nuzzled up to the man’s cheek, and the other half a man is nuzzled up to his ear. Presumably the man is bisexual and therefore split into two parts: his heterosexual self and his homosexual self. This visual depiction of bisexuality reifies the notion that bisexuals are torn between two polar desires and experience equal and concurrent attraction to more than one partner simultaneously. Furthermore, the triad represented in this way suggests that the essential bisexual is having simultaneous liaisons with heterosexual and homosexual partners.Within the convention of the triad there is also a sub-genre closely connected with hypersexualization and the male gaze. In these cases, the triad is commonly presented in varying states of undress and/or in a bed. An article in The Guardian from 11 April 2014 with the headline: “Make up your mind! The science behind bisexuality” (Browne) includes an image with three attractive young people in bed together. A man is sitting up between two sleeping women and smoking a cigarette – the cigarette connotes post-coital sexual activity, as does the smirk on his face. This may have been a suitable image if the article had been about having a threesome, but the headline—and the article—are attempting to explain the science behind bisexuality. Furthermore, while the image is intended to illustrate an article on bisexuality, the image is fundamentally misleading. The women in the image are asleep and to the side and the man is awake and in the middle. He is the central figure – it is a picture of him. So who is the bisexual in the image? What is the image attempting to do? It seems that the goal is to titillate, to excite, and to satisfy a particularly heterosexual fantasy rather than to discuss bisexuality. This hypersexualization once again references the mistaken idea (or heterosexual male fantasy) that bisexuality is only expressed through simultaneous sex acts.Many of these examples are salacious but they occur with surprising regularity in the mainstream media. On 17 February 2016, the American Association of Retired Persons posted an article to the front page of their website titled “Am I Discovering I'm Bisexual?” (Schwartz, 2016). In the accompanying image at the top of the article, we see three people sitting on a park bench – two men on either side of a woman. The image is taken from behind the bench so we see their backs and ostensibly they do not see us, the viewer. The man on the left is kissing the woman in the center while also holding hands behind the back of the bench with the man sitting on her other side. The man on the right is looking away from the couple kissing, suggesting he is not directly included in their intimate activity. Furthermore, the two men are holding hands behind the bench, which could also be code for behind the woman’s back, suggesting infidelity to the dyad and depicting some form of duplicity. This triad reinforces the trope of the bisexual as promiscuous and untrustworthy.Images such as these are common and range from the more inoffensive to the salacious. The resulting implications are that bisexuals are torn between their internal hetero and homo desires, require simultaneous partners, and are untrustworthy partners. Notably, in all these images it is never clear exactly which individuals are bisexual. Are all three members of the triad bisexual? While this is a possible read, the dominant discourse leads us to believe that one of person in the triad is the bisexual while the others adhere to more dominant sexualities.Participants in my research were acutely aware of these media representations and expressed frequent negative reactions to the implications of the triad. Each article contained numerous online comments expressing frustration with the use of “threesomes.” As one commentator stated: “Without a threesome, we’re invisible. It’s messed up. I always imagine a t-shirt with 3 couples stick figure like: girl + girl, girl + boy, and boy + boy. and it says “6 bisexuals.” What is made clear in many user comments is that the mainstream social scripts used to portray bisexuality are clearly at odds with the ways in which bisexuals choose to describe or portray themselves. Seeing through CapitalismOne of the significant conclusions of this research was the ways in which the misrepresentation of bisexuality results in many individuals feeling underrepresented or made invisible within mainstream media. The most salient themes to emerge from this research is participants’ affective struggle with feeling "invisible.” The frequency of discourse specific to invisibility is significant, as well as its expressed negatively associated experiences and feelings. The public sharing of those reactions among individuals, and the ensuing discourse that emerges from those interactions, include imagining what visibility “looks” like (its semiotic markers and what would make those markers “successful” for visibility), and the articulation of “solutions” to counter perceived invisibility. Notably, participants often express the desire for visibility in terms of commodification. As one participant posted, “their [sic] is no style for bi, there is no voice tone, unless I'm wearing my shirt, how is anyone to know?” Another participant explicated, “I wish there was a look. I wish I could get up every day and put on the clothes and jewelry that identified me to the world when I stepped out of my apartment. I wish I was as visible on the street as I am on facebook.” This longing for a culturally recognizable bisexual identity is articulated as a desire for a market commodification of “bisexual.” But a commodified identity may be a misguided desire. As Berger warns: “Publicity is not merely an assembly of competing messages: it is a language in itself which is always being used to make the same general purpose… It proposes to each of us that we transform ourselves, or our lives, by buying something more” (131). Consumerism—and its bedfellow—marketing, aim to sell the fantasy of a future self whereby the consumer transforms themselves through material objects, not transforming the culture to accept them. Berger further elicits that marketing essentially convinces us that we are not whole the way we are and sells us the idea of a wholeness achieved through consumerism (134). Following Berger’s argument, this desire for a commodified identity, while genuine, may fundamentally undermine the autonomy bisexuals currently have insomuch as without a corporate brand, bisexual representations are more culturally malleable and therefore potentially more inclusive to the real diversity of bisexual identified people.However, Berger also rightly noted that “publicity is the culture of the consumer society. It propagates through images that society’s belief in itself” (139). Without any publicity, bisexuals are not wrong to feel invisible in a consumer culture. And yet “publicity turns consumption into a substitute for democracy. The choice of what one eats (or wears or drives) takes the place of significant political choice” (149). A commodified identity will not likely usher in meaningful political change in a culture where bisexuals experience worse mental health and discrimination outcomes than lesbian and gay people (LGBT Advisory Committee, 2011). Bisexuals Online: New Ways of SeeingThe Internet, which was touted early as a space of great potential for anonymity and exploration where visibility can be masked, here becomes the place where bisexuals try to make the perceived invisible ‘visible.’ Digital technologies and spaces provide particularly useful environments for participants of online bisexual spaces to negotiate issues of invisibility as participants construct visible identities through daily posts, threads, videos, and discourse in which bisexuality is discursively and visually imagined, produced, articulated, defended, and desired. But most importantly these digital technologies provide bisexuals with opportunities to counter misrepresentations in mainstream media. In the frequent example of intimate partners in the physical world rendering a bisexual’s identity invisible, participants of these online communities grapple with the seeming paradox of one’s offline self as the avatar and one’s online self as more fully integrated, represented, and recognized. One participant expressed this experience, remarking:I feel I'm more out online that offline. That's because, in the offline world there's the whole ''social assumptions'' issue. My co-workers, friends, etc, know I have a boyfriend, wich [sic] equals ''straight'' for most ppl out there. So, I'll out myself when the occasion comes (talking abt smn I used to date, the LGBT youth group I used to belong to, or usually just abt some girl I find attractive) and usually ppl are not surprised. Whereas online, my pic at Facebook (and Orkut) is a Bisexual Pride icon. I follow Bi groups on Twitter. I'm a member of bi groups. So, online it's spelled out, while offline ppl usually think me having a bf means I'm straight.The I Am Visible (IAV) campaign is just one example of an organized response to the perceived erasure of bisexuals in mainstream culture. Launched in January 2011 by Adrienne McCue (nee Williams), the executive director of the Bi Social Network, a non-profit organization aimed at bringing awareness to representations of bisexuality in media. The campaign was hosted on bisocialnetwork.com, with the goal to “stop biphobia and bi-erasure in our community, media, news, and entertainment,” Prior to going live, IAV implemented a six-month lead-up advertising campaign across multiple online bisexual forums, making it the most publicized new venture during the period of my study. IAV hosted user-generated videos and posters that followed the vernacular of coming out and provided emotional support for listeners who may be struggling with their identity in a world largely hostile to bisexuality. Perceived invisibility was the central theme of IAV, which was the most salient theme for every bisexual group I studied online.Perhaps the most notable video and still image series to come out of IAV were those including Emmy nominated Scottish actor Alan Cumming. Cumming, a long-time Broadway thespian and acclaimed film actor, openly identifies as bisexual and has criticized ‘gaystream’ outlets on more than one occasion for intentionally mislabeling him as ‘gay.’ As such, Alan Cumming is one of the most prominently celebrated bisexual celebrities during the time of my study. While there are numerous famous out gays and lesbians in the media industry who have lent their celebrity status to endorse LGBT political messages—such as Ellen DeGeneres, Elton John, and Neil Patrick Harris, to name a few—there have been notably fewer celebrities supporting bisexual specific causes. Therefore, Cummings involvement with IAV was significant for many bisexuals. His star status was perceived as contributing legitimacy to bisexuality and increasing cultural visibility for bisexuals.These campaigns to become more visible are based in the need to counteract the false media narrative, which is, in a sense, to educate the wider society as to what bisexuality is not. The campaigns are an attempt to repair the false messages which have been “learnt” and replace them with more accurate representations. The Internet provides bisexual activists with a tool with which they can work to correct the skewed media image of themselves. Additionally, the Internet has also become a place where bisexuals can more easily represent themselves through a wide variety of semiotic markers in ways which would be difficult or unacceptable offline. In these ways, the Internet has become a key device in bisexual activism and while it is important not to uncritically praise the technology it plays an important role in enabling correct representation. ReferencesBarker, Meg. "Heteronormativity and the Exclusion of Bisexuality in Psychology." Out in Psychology: Lesbian, Gay, Bisexual, Trans, and Queer Perspectives. Eds. Victoria Clarke and Elizabeth Peel. Chichester: Wiley, 2007. 86–118.Berger, John. Ways of Seeing. London: Penguin Books, 1972.Blumstein, Phillip W., and Pepper Schwartz. “Bisexuality: Some Social Psychological Issues.” Journal of Social Issues 33.2 (1977): 30–45.Browne, Tania. “Make Up Your Mind! The Science behind Bisexuality.” The Guardian 11 Apr. 2014.Denizet-Lewis, Benoit. "The Scientific Quest to Prove Bisexuality Exists." New York Times 20 Mar. 2014.Diamond, Lisa. Sexual Fluidity: Understanding Women's Love and Desire. Harvard UP, 2008.Diamond, Milton. “Homosexuality and Bisexuality in Different Populations.” Archives of Sexual Behavior 22.4 (1993): 291-310.Gates, Gary J. How Many People Are Lesbian, Gay, Bisexual and Transgender? Williams Institute, UCLA School of Law, 2011.Kinsey, Alfred, et al. Sexual Behavior in the Human Female. Philadelphia: Saunders, 1953.Klein, Fitz. The Bisexual Option. London: Routledge, 1978.Leland, J. “Not Gay, Not Straight: A New Sexuality Emerges.” Newsweek 17 July 1995: 44–50.Schwartz, P. “Am I Discovering I Am Bisexual?” AARP (2016). 20 Mar. 2016 <http://aarp.org/home-family/sex-intimacy/info-2016/discovering-bisexual-schwartz.html>.

The National Cultural Policy Discussion Paper—drafted to assist the Australian Government in developing the first national Cultural Policy since Creative Nation nearly two decades ago—envisages a future in which arts, cultural and creative activities directly support the development of an inclusive, innovative and productive Australia. "The policy," it says, "will be based on an understanding that a creative nation produces a more inclusive society and a more expressive and confident citizenry by encouraging our ability to express, describe and share our diverse experiences—with each other and with the world" (Australian Government 3). Even a cursory reading of this Discussion Paper makes it clear that the question of impact—in aesthetic, cultural and economic terms—is central to the Government's agenda in developing a new Cultural Policy. Hand-in-hand with the notion of impact comes the process of measurement of progress. The Discussion Paper notes that progress "must be measurable, and the Government will invest in ways to assess the impact that the National Cultural Policy has on society and the economy" (11). If progress must be measurable, this raises questions about what arts, cultural and creative workers do, whether it is worth it, and whether they could be doing it better. In effect, the Discussion Paper pushes artsworkers ever closer to a climate in which they have to be skilled not just at making work, but at making the impact of this work clear to stakeholders. The Government in its plans for Australia's cultural future, is clearly most supportive of artsworkers who can do this, and the scholars, educators and employers who can best train the artsworkers of the future to do this. Teaching Artsworkers to Measure the Impact of Their Work: The Challenges How do we train artsworkers to assess, measure and articulate the impact of what they do? How do we prepare them to be ready to work in a climate that will—as the National Cultural Policy Discussion Paper makes clear—emphasise measuring impact, communicating impact, and communicating impact across aesthetic, cultural and economic categories? As educators delivering training in this area, the Discussion Paper has made this already compelling question even more pressing as we work to develop the career-ready graduates the Government seeks. Our program, the Master of Creative Industries (Creative Production & Arts Management) offered in the Creative Industries Faculty at Queensland University of Technology in Brisbane, Australia, is, like most programs in arts and cultural management in the US, UK, Europe and Australia, offering a three-Semester postgraduate program that allows students to develop the career-ready skills required to work as managers of arts, cultural or creative organisations. That we need to train our graduates to work not just as producers of plays, paintings or recordings, but as entrepreneurial arts advocates who can measure and articulate the value of their programs to others, is not news (Hadley "Creating" 647-48; cf. Brkic; Ebewo and Sirayi; Beckerman; Sikes). Our program—which offers training in arts policy, management, marketing and budgeting followed by training in entrepreneurship and a practical project—is already structured around this necessity. The question of how to teach students this diverse skill set is, however, still a subject of debate; and the question of how to teach students to measure the impact of this work is even more difficult. There is, of course, a body of literature on the impact of arts, cultural and creative activities, value and evaluation that has been developed over the past decade, particularly through landmark reports like Matarasso's Use or Ornament? The Social Impact of Participation in the Arts (1997) and the RAND Corporation's Gifts of the Muse: Reframing the Debate about the Benefits of the Arts (2004). There are also emergent studies in an Australian context: Madden's "Cautionary Note" on using economic impact studies in the arts (2001); case studies on arts and wellbeing by consultancy firm Effective Change (2003); case studies by DCITA (2003); the Asia Pacific Journal of Arts and Cultural Management (2009) issue on "value"; and Australia Council publications on arts, culture and economy. As Richards has explained, "evaluation is basically a straightforward concept. E-value-ation = a process of enquiry that allows a judgment of amount, value or worth to be made" (99). What makes arts evaluation difficult is not the concept, but the measurement of intangible values—aesthetic quality, expression, engagement or experience. In the literature, discussion has been plagued by debate about what is measured, what method is used, and whether subjective values can in fact be measured. Commentators note that in current practice, questions of value are still deferred because they are too difficult to measure (Bilton and Leary 52), discussed only in terms of economic measures such as market share or satisfaction which are statistically quantifiable (Belfiore and Bennett "Rethinking" 137), or done through un-rigorous surveys that draw only ambiguous, subjective, or selective responses (Merli 110). According to Belfiore and Bennett, Public debate about the value of the arts thus comes to be dominated by what might best be termed the cult of the measurable; and, of course, it is those disciplines primarily concerned with measurement, namely, economics and statistics, which are looked upon to find the evidence that will finally prove why the arts are so important to individuals and societies. A corollary of this is that the humanities are of little use in this investigation. ("Rethinking" 137) Accordingly, Ragsdale states, Arts organizations [still] need to find a way to assess their progress in …making great art that matters to people—as evidenced, perhaps, by increased enthusiasm, frequency of attendance, the capacity and desire to talk or write about one's experience, or in some other way respond to the experience, the curiosity to learn about the art form and the ideas encountered, the depth of emotional response, the quality of the social connections made, and the expansion of one's aesthetics over time. Commentators are still looking for a balanced approach (cf. Geursen and Rentschler; Falk and Dierkling), which evaluates aesthetic practices, business practices, audience response, and results for all parties, in tandem. An approach which evaluates intrinsic impacts, instrumental impacts, and the way each enables the other, in tandem—with an emphasis not on the numbers but on whether we are getting better at what we are doing. And, of course, allows evaluators of arts, cultural and creative activities to use creative arts methods—sketches, stories, bodily movements and relationships and so forth—to provide data to inform the assessment, so they can draw not just on statistical research methods but on arts, culture and humanities research methods. Teaching Artsworkers to Measure the Impact of Their Work: Our Approach As a result of this contested terrain, our method for training artsworkers to measure the impact of their programs has emerged not just from these debates—which tend to conclude by declaring the needs for better methods without providing them—but from a research-teaching nexus in which our own trial-and-error work as consultants to arts, cultural and educational organisations looking to measure the impact of or improve their programs has taught us what is effective. Each of us has worked as managers of professional associations such as Drama Australia and Australasian Association for Theatre, Drama and Performance Studies (ADSA), members of boards or committees for arts organisations such as Youth Arts Queensland and Young People and the Arts Australia (YPAA), as well as consultants to major cultural organisations like the Queensland Performing Arts Centre and the Brisbane Festival. The methods for measuring impact we have developed via this work are based not just on surveys and statistics, but on our own practice as scholars and producers of culture—and are therefore based in arts, culture and humanities approaches. As scholars, we investigate the way marginalised groups tell stories—particularly groups marked by age, gender, race or ability, using community, contemporary and public space performance practices (cf. Hadley, "Bree"; Gattenhof). What we have learned by bringing this sort of scholarly analysis into dialogue with a more systematised approach to articulating impact to government, stakeholders and sponsors is that there is no one-size-fits-all approach. What is needed, instead, is a toolkit, which incorporates central principles and stages, together with qualitative, quantitative and performative tools to track aesthetics, accessibility, inclusivity, capacity-building, creativity etc., as appropriate on a case-by-case basis. Whatever the approach, it is critical that the data track the relationship between the experience the artists, audience or stakeholders anticipated the activity should have, the aspects of the activity that enabled that experience to emerge (or not), and the effect of that (or not) for the arts organisation, their artists, their partners, or their audiences. The combination of methods needs to be selected in consultation with the arts organisation, and the negotiations typically need to include detailed discussion of what should be evaluated (aesthetics, access, inclusivity, or capacity), when it should be evaluated (before, during or after), and how the results should be communicated (including the difference between evaluation for reporting purposes and evaluation for program improvement purposes, and the difference between evaluation and related processes like reflection, documentary-making, or market research). Translating what we have learned through our cultural research and consultancy into a study package for students relies on an understanding of what they want from their study. This, typically, is practical career-ready skills. Students want to produce their own arts, or produce other people's arts, and most have not imagined themselves participating in meta-level processes in which they argue the value of arts, cultural and creative activities (Hadley, "Creating" 652). Accordingly, most have not thought of themselves as researchers, using cultural research methods to create reports that inform how the Australian government values, supports, and services the arts. The first step in teaching students to operate effectively as evaluators of arts, cultural and creative activities is, then, to re-orient their expectations to include this in their understanding of what artsworkers do, what skills artsworkers need, and where they deploy these skills. Simply handing over our own methods, as "the" methods, would not enable graduates to work effectively in a climate were one size will not fit all, and methods for evaluating impact need to be negotiated again for each new context. 1. Understanding the Need for Evaluation: Cause and Effect The first step in encouraging students to become effective evaluators is asking them to map their sector, the major stakeholders, the agendas, alignments and misalignments in what the various players are trying to achieve, and the programs, projects and products through which the players are trying to achieve it. This starting point is drawn from Program Theory—which, as Joon-Yee Kwok argues in her evaluation of the SPARK National Mentoring Program for Young and Emerging Artists (2010) is useful in evaluating cultural activities. The Program Theory approach starts with a flow chart that represents relationships between activities in a program, allowing evaluators to unpack some of the assumptions the program's producers have about what activities have what sort of effect, then test whether they are in fact having that sort of effect (cf. Hall and Hall). It could, for example, start with a flow chart representing the relationship between a community arts policy, a community arts organisation, a community-devised show it is producing, and a blog it has created because it assumes it will allow the public to become more interested in the show the participants are creating, to unpack the assumptions about the sort of effect this is supposed to have, and test whether this is in fact having this sort of effect. Masterclasses, conversations and debate with peers and industry professionals about the agendas, activities and assumptions underpinning programs in their sector allows students to look for elements that may be critical in their programs' ability to achieve (or not) an anticipated impact. In effect to start asking about, "the way things are done now, […] what things are done well, and […] what could be done better" (Australian Government 12).2. Understanding the Nature of Evaluation: PurposeOnce students have been alerted to the need to look for cause-effect assumptions that can determine whether or not their program, project or product is effective, they are asked to consider what data they should be developing about this, why, and for whom. Are they evaluating a program to account to government, stakeholders and sponsors for the money they have spent? To improve the way it works? To use that information to develop innovative new programs in future? In other words, who is the audience? Being aware of the many possible purposes and audiences for evaluation information can allow students to be clear not just about what needs to be evaluated, but the nature of the evaluation they will do—a largely statistical report, versus a narrative summary of experiences, emotions and effects—which may differ depending on the audience.3. Making Decisions about What to Evaluate: Priorities When setting out to measure the impact of arts, cultural or creative activities, many people try to measure everything, measure for the purposes of reporting, improvement and development using the same methods, or gather a range of different sorts of data in the hope that something in it will answer questions about whether an activity is having the anticipated effect, and, if so, how. We ask students to be more selective, making strategic decisions about which anticipated effects of a program, project or product need to be evaluated, whether the evaluation is for reporting, improvement or innovation purposes, and what information stakeholders most require. In addition to the concept of collecting data about critical points where programs succeed or fail in achieving a desired effect, and different approaches for reporting, improvement or development, we ask students to think about the different categories of effect that may be more or less interesting to different stakeholders. This is not an exhaustive list, or a list of things every evaluation should measure. It is a tool to demonstrate to would-be evaluators points of focus that could be developed, depending on the stakeholders' priorities, the purpose of the evaluation, and the critical points at which desired effects need to occur to ensure success. Without such framing, evaluators are likely to end up with unusable data, which become a difficulty to deal with rather than a benefit for the artsworkers, arts organisations or stakeholders. 4. Methods for Evaluation: Process To be effective, methods for collecting data about how arts, cultural or creative activities have (or fail to have) anticipated impact need to include conventional survey, interview and focus group style tools, and creative or performative tools such as discussion, documentation or observation. We encourage students to use creative practice to draw out people's experience of arts events—for example, observation, documentation still images, video or audio documentation, or facilitated development of sketches, stories or scenes about an experience, can be used to register and record people's feelings. These sorts of methods can capture what Mihaly Csikszentmihalyi calls "flow" of experience (cf. Belfiore and Bennett, "Determinants" 232)—for example, photos of a festival space at hourly intervals or the colours a child uses to convey memory of a performance can capture to flow of movement, engagement, and experience for spectators more clearly than statistics. These, together with conventional surveys or interviews that comment on the feelings expressed, allow for a combination of quantitative, qualitative and performative data to demonstrate impact. The approach becomes arts- and humanities- based, using arts methods to encourage people to talk, write or otherwise respond to their experience in terms of emotion, connection, community, or expansion of aesthetics. The evaluator still needs to draw out the meaning of the responses through content, text or discourse analysis, and teaching students how to do a content analysis of quantitative, qualitative and performative data is critical at this stage. When teaching students how to evaluate their data, our method encourages students not just to focus on the experience, or the effect of the experience, but the relationship between the two—the things that act as "enablers" "determinants" (White and Hede; Belfiore and Bennett, "Determinants" passim) of effect. This approach allows the evaluator to use a combination of conventional and creative methods to describe not just what effect an activity had, but, more critically, what enabled it to have that effect, providing a firmer platform for discussing the impact, and how it could be replicated, developed or deepened next time, than a list of effects and numbers of people who felt those effects alone. 5. Communicating Results: Politics Often arts, cultural or creative organisations can be concerned about the image of their work an evaluation will create. The final step in our approach is to alert students to the professional, political and ethical implications of evaluation. Students learn to share their knowledge with organisations, encouraging them to see the value of reporting both correct and incorrect assumptions about the impact of their activities, as part of a continuous improvement process. Then we assist them in drawing the results of this sort of cultural research into planning, development and training documents which may assist the organisation in improving in the future. In effect, it is about encouraging organisations to take the Australian government at its word when, in the National Cultural Policy Discussion Paper, it says it that measuring impact is about measuring progress—what we do well, what we could do better, and how, not just success statistics about who is most successful—as it is this that will ultimately be most useful in creating an inclusive, innovative, productive Australia. Teaching Artsworkers to Measure the Impact of Their Work: The Impact of Our Approach What, then, is the impact of our training on graduates' ability to measure the impact of work? Have we made measurable progress in our efforts to teach artsworkers to assess and articulate the impact of their work? The MCI (CP&AM) has been offered for three years. Our approach is still emergent and experimental. We have, though, identified a number of impacts of our work. First, our students are less fearful of becoming involved in measuring the value or impact of arts, cultural and creative programs. This is evidenced by the number who chooses to do some sort of evaluation for their Major Project, a 15,000 word individual project or internship which concludes their degree. Of the 50 or so students who have reached the Major Project in three years—35 completed and 15 in planning for 2012—about a third have incorporated evaluation into their Major Project. This includes evaluation of sector, business or producing models (5), youth arts and youth arts mentorship programs (4), audience development programs (2), touring programs (4), and even other arts management training programs (1). Indeed, after internships in programming or producing roles, this work—aligned with the Government's interest in improving training of young artists, touring, audience development, and economic development—has become a most popular Major Project option. This has enabled students to work with a range of arts, cultural and creative organisations, share their training—their methods, their understanding of what their methods can measure, when, and how—with Industry. Second, this Industry-engaged training has helped graduates in securing employment. This is evidenced by the fact that graduates have gone on to be employed with organisations they have interned with as part of their Major Project, or other organisations, including some of Brisbane's biggest cultural organisations—local and state government departments, Queensland Performing Arts Centre, Brisbane Festival, Metro Arts, Backbone Youth Arts, and Youth Arts Queensland, amongst others. Thirdly, graduates' contribution to local organisations and industry has increased the profile of a relatively new program. This is evidenced by the fact that it enrols 40 to 50 new students a year across Graduate Certificate / MCI (CP&AM) programs, typically two thirds domestic students and one third international students from Canada, Germany, France, Denmark, Norway and, of course, China. Indeed, some students are now disseminating this work globally, undertaking their Major Project as an internship or industry project with an organisation overseas. In effect, our training's impact emerges not just from our research, or our training, but from the fact that our graduates disseminate our approach to a range of arts, cultural and creative organisations in a practical way. We have, as a result, expanded the audience for this approach, and the number of people and contexts via which it is being adapted and made useful. Whilst few of students come into our program with a desire to do this sort of work, or even a working knowledge of the policy that informs it, on completion many consider it a viable part of their practice and career pathway. When they realise what they can achieve, and what it can mean to the organisations they work with, they do incorporate research, research consultant and government roles as part of their career portfolio, and thus make a contribution to the strong cultural sector the Government envisages in the National Cultural Policy Discussion Paper. Our work as scholars, practitioners and educators has thus enabled us to take a long-term, processual and grassroots approach to reshaping agendas for approaches to this form of cultural research, as our practices are adopted and adapted by students and industry stakeholders. Given the challenges commentators have identified in creating and disseminating effective evaluation methods in arts over the past decade, this, for us—though by no means work that is complete—does count as measurable progress. References Beckerman, Gary. "Adventuring Arts Entrepreneurship Curricula in Higher Education: An Examination of Present Efforts, Obstacles, and Best pPractices." The Journal of Arts Management, Law, and Society 37.2 (2007): 87-112. Belfiore, Eleaonora, and Oliver Bennett. "Determinants of Impact: Towards a Better Understanding of Encounters with the Arts." Cultural Trends 16.3 (2007): 225-75. ———. "Rethinking the Social Impacts of the Arts." International Journal of Cultural Policy 13.2 (2007): 135-51. Bilton, Chris, and Ruth Leary. "What Can Managers Do for Creativity? Brokering Creativity in the Creative Industries." International Journal of Cultural Policy 8.1 (2002): 49-64. Brkic, Aleksandar. "Teaching Arts Management: Where Did We Lose the Core Ideas?" Journal of Arts Management, Law and Society 38.4 (2009): 270-80. Czikszentmihalyi, Mihaly. "A Systems Perspective on Creativity." Creative Management. Ed. Jane Henry. Sage: London, 2001. 11-26. Australian Government. "National Cultural Policy Discussion Paper." Department of Prime Minster and Cabinet – Office for the Arts 2011. 1 Oct. 2011 ‹http://culture.arts.gov.au/discussion-paper›. Ebewo, Patrick, and Mzo Sirayi. "The Concept of Arts/Cultural Management: A Critical Reflection." Journal of Arts Management, Law and Society 38.4 (2009): 281-95. Effective Change and VicHealth. Creative Connections: Promoting Mental Health and Wellbeing through Community Arts Participation 2003. 1 Oct. 2011 ‹http://www.vichealth.vic.gov.au/en/Publications/Social-connection/Creative-Connections.aspx›. Effective Change. Evaluating Community Arts and Community Well Being 2003. 1 Oct. 2011 ‹http://www.arts.vic.gov.au/Research_and_Resources/Resources/Evaluating_Community_Arts_and_Wellbeing›. Falk, John H., and Lynn. D Dierking. "Re-Envisioning Success in the Cultural Sector." Cultural Trends 17.4 (2008): 233-46. Gattenhof, Sandra. "Sandra Gattenhof." QUT ePrints Article Repository. Queensland University of Technology, 2011. 1 Oct. 2011 ‹http://eprints.qut.edu.au/view/person/Gattenhof,_Sandra.html›. Geursen, Gus and Ruth Rentschler. "Unravelling Cultural Value." The Journal of Arts Management, Law and Society 33.3 (2003): 196-210. Hall, Irene and David Hall. Evaluation and Social Research: Introducing Small Scale Practice. London: Palgrave McMillan, 2004. Hadley, Bree. "Bree Hadley." QUT ePrints Article Repository. Queensland University of Technology, 2011. 1 Oct. 2011 ‹http://eprints.qut.edu.au/view/person/Hadley,_Bree.html›. ———. "Creating Successful Cultural Brokers: The Pros and Cons of a Community of Practice Approach in Arts Management Education." Asia Pacific Journal of Arts and Cultural Management 8.1 (2011): 645-59. Kwok, Joon. When Sparks Fly: Developing Formal Mentoring Programs for the Career Development of Young and Emerging Artists. Masters Thesis. Brisbane: Queensland University of Technology, 2010. Madden, Christopher. "Using 'Economic' Impact Studies in Arts and Cultural Advocacy: A Cautionary Note." Media International Australia, Incorporating Culture & Policy 98 (2001): 161-78. Matarasso, Francis. Use or Ornament? The Social Impact of Participation in the Arts. Bournes Greens, Stroud: Comedia, 1997. McCarthy, Kevin. F., Elizabeth H. Ondaatje, Laura Zakaras, and Arthur Brooks. Gifts of the Muse: Reframing the Debate about the Benefits of the Arts. Santa Monica: RAND Corporation, 2004. Merli, Paola. "Evaluating the Social Impact of Participation in Arts Activities." International Journal of Cultural Policy 8.1 (2002): 107-18. Muir, Jan. The Regional Impact of Cultural Programs: Some Case Study Findings. Communications Research Unit - DCITA, 2003. Ragsdale, Diana. "Keynote - Surviving the Culture Change." Australia Council Arts Marketing Summit. Australia Council for the Arts: 2008. Richards, Alison. "Evaluation Approaches." Creative Collaboration: Artists and Communities. Melbourne: Victorian College of the Arts, University of Melbourne, 2006. Sikes, Michael. "Higher Education Training in Arts Administration: A Millennial and Metaphoric Reappraisal. Journal of Arts Management, Law and Society 30.2 (2000): 91-101.White, Tabitha, and Anne-Marie Hede. "Using Narrative Inquiry to Explore the Impact of Art on Individuals." Journal of Arts Management, Law, and Society 38.1 (2008): 19-35.

Introduction Since at least the work of van Gennep in the early 1900s, anthropologists have recognised that borders and thresholds are crucial in understanding human behavior and culture. But particularly in the past few decades, the study of borders has moved from the margins of social inquiry to the centre. At the same time, fashion (Entwistle), including clothing and skin (Bille), have emerged as crucial to understanding the human condition. In this article, we draw on and expand this literature on borders and fashion to demonstrate that the way Indonesians fashion and display their body reflects larger changes in attitudes about morality and gender. And in this, borders and thresholds are crucial. In order to make this argument, we consider three case studies from Indonesia. First, we discuss the requirement that policewomen submit to a virginity test, which takes the form of a hymen inspection. Then, we look at the successful campaign by policewomen to be able to wear the Islamic veil. Finally, we consider reports of Makassar policewomen who attempt to turn young people into exemplary citizens and traffic 'ambassadors' by using downtown crosswalks as a catwalk. In each of these three cases, fashioned borders and thresholds play prominent roles in determining the expression of morality, particularly in relation to gender roles. Fashion, Thresholds, and Borders There was once a time when social scientists tended to view clothes and other forms of adornment as "frivolous" or trivial (Entwistle 14; 18). Over the past few decades, however, fashion has emerged as a serious study within the social sciences. Writers have, for example, demonstrated how fashion is closely tied up with identity and capitalism (King and Winarnita). And although fashion used to be envisaged as emerging from London, New York, Paris, Milan, and other Western locations, scholars are increasingly recognising the importance of Asia in fashion studies. Whether the haute couture and cosplay in Tokyo or 'traditional' weaving of materials in Indonesia, studying fashion and clothes provides crucial insight into the cultures and societies of Asia (King and Winarnita). To contribute to this burgeoning area of research in Asian fashion, we draw on the anthropological classics, in particular, the concept of threshold. Every time we walk through a doorway, gate, or cross a line, we cross a threshold. But what classic anthropology shows us is that crossing certain thresholds changes our social status. This changing particularly occurs in the context of ritual. For example, walking onto a stage, a person becomes a performer or actor. Traditionally a groom carries his bride through the door, symbolising the transition to husband and wife (Douglas 115). In this article, we apply this idea that crossing thresholds is associated with transitioning social statuses (Douglas; Turner; van Gennep). To do this, we first establish a connection between national and personal borders. We argue that skin and clothes have a cultural function in addition to their practical functions. Typically, skin is imagined as a kind of social border and clothes provide a buffer zone. But to make this case, we first need to elaborate how we understand national borders. In the traditional kingdoms of Southeast Asia, borders were largely imperceptible or non-existent. Power was thought to radiate out from the ruler, through the capital, and into the surrounding areas. As it emanated from this 'exemplary centre', power was thought to weaken (Geertz 222-229). Rather than an area of land, a kingdom was thought to be a group of people (Tambiah 516). In this context, borders were irrelevant. But as in other parts of the world, in the era of nations, the situation has entirely changed in modern Indonesia. In a simple sense, our current global legal system is created out of international borders. These borders are, first and foremost, imagined lines that separate the area belonging to one nation-state from another. Borders are for the most part simply drawn on maps, explained by reference to latitude, longitude, and other features of the landscape. But, obviously, borders exist outside the imagination and on maps. They have significance in international law, in separating one jurisdiction from another. Usually, national borders can only be legally crossed with appropriate documentation and legal status. In extreme cases, crossing another nation's border can be a cause for war; but the difficulty in determining borders in practice means both sides may debate over whether a border was actually crossed. Where this possibility exists, sometimes the imagined lines are marked on the actual earth by fences, walls, etc. To protect borders, buffer zones are sometimes created. The most famous buffer zone is the Demilitarized Zone or DMZ, which runs along North Korea's border with South Korea. As no peace treaty has been signed between these two nations, they are technically still at war. Hostility is intense, but armed conflict has, for the most part, ceased. The buffer helps both sides maintain this cessation by enabling them to distinguish between an unintentional infringement and a genuine invasion. All this practical significance of borders and buffer zones is obvious. But borders become even more fascinating when we look beyond their 'practical' significance. Borders have ritual as well as practical importance. Like the flag, the nation's borders have meaning. They also have moral implications. Borders have become an issue of almost fanatical or zealous significance. The 2015 footage of a female Hungarian reporter physically attacking asylum seekers who crossed the border into her nation indicates that she was not just upset with their legal status; presumably she does not physically attack people breaking other laws (BBC News). Similarly the border vigilantes, volunteers who 'protect' the southern borders of the USA against what they see as drug cartels, apparently take no action against white-collar criminals in the cities of the USA. For the Hungarian reporter and the border vigilantes, the border is a threshold to be protected at all costs and those who cross it without proper documentation and process are more than just law breakers; they are moral transgressors, possibly even equivalent to filth. So much for border crossing. What about the borders themselves? As mentioned, fences, walls, and other markers are built to make the imagined line tangible. But some borders go well beyond that. Borders are also adorned or fashioned. For instance, the border between North and South Korea serves as a site where national sovereignty and legitimacy are emphasised, defended, and contested. It is at this buffer zone that these two nations look at each other and showcase to the other what is ideally contained within their own respective national borders. But it is not just national states which have buffer zones and borders with deep significance in the modern period; our own clothes and skin possess a similar moral significance. Why are clothes so important? Of course, like national borders, clothes have practical and functional use. Clothes keep us warm, dry, and protected from the sun and other elements. In addition to this practical use, clothes are heavily imbued with significance. Clothes are a way to fashion the body. They define our various identities including gender, class, etc. Clothes also signify morality and modesty (Leach 152). But where does this morality regarding clothing come from? Clothing is a site where state, religious, and familial control is played out. Just like the DMZ, our bodies are aestheticised with adornments, accoutrements, and decorations, and they are imbued with strong symbolic significance in attempts to reveal what constitutes the enclosed. Just like the DMZ, our clothing or lack thereof is considered constitutive of the nation. Because clothes play a role akin to geo-political borders, clothes are our DMZ; they mark us as good citizens. Whether we wear gang colours or a cross on our necklace, they can show us as belonging to something powerful, protective, and worth belonging to. They also show others that they do not belong. In relation to this, perhaps it is necessary to mention one cultural aspect of clothing. This is the importance, in the modern Indonesian nation, of appearing rapih. Rapih typically means clean, tidy, and well-groomed. The ripped and dirty jeans, old T-shirts, unshaven, unkempt hair, which has, at times, been mainstream fashion in other parts of the world, is typically viewed negatively in Indonesia, where wearing 'appropriate' clothing has been tied up with the nationalist project. For instance, as a primary school student in Indonesia, Winarnita was taught Pendidikan Moral Pancasila (Pancasila Moral Education). Named after the Pancasila, the guiding principles of the Indonesian nation, this class is also known as "PMP". It provided instruction in how to be a good national citizen. Crucially, this included deportment. The importance of being well dressed and rapih was stressed. In sum, like national borders, clothes are much more than their practical significance and practical use. This analysis can be extended by looking at skin. The practical significance of skin cannot be overstated; it is crucial to survival. But that does not preclude the possibility that humans—being the prolifically creative and meaning-making animals that we are—can make skin meaningful. Everyday racism, for instance, is primarily enabled by people making skin colour meaningful. And although skin is not optional, we fashion it into borders that define who we are, such as through tattoos, by piercing, accessorising, and through various forms of body modification (from body building to genital modification). Thresholds are also important in understanding skin. In a modern Indonesian context, when a penis crosses a woman's hymen her ritual status changes; she is no longer a virgin maiden (gadis) or virgin (perawan). If we apply the analogy of borders to the hymen, we could think of it as a checkpoint or border crossing. At a national border crossing, only people with correct credentials (for instance, passport holders with visas) can legally cross and only at certain times (not on public holidays or only from 9-5). At a hymen, only people with the correct status, namely one's husband, can morally cross. The checkpoint is a crucial reminder of the nation state and citizen scheme. The hymen is a crucial reminder of heteronormative standards. Crucial to understanding Indonesian notions of skin is the idea of aurat (Bennett 2007; Parker 2008). This term refers to parts of the body that should be covered. Or it could be said that aurat refers to 'intimate parts' of the body, if we understand that different parts of the body are considered intimate in Indonesian cultures. Indonesians tend to describe the aurat as those body parts that arouse feelings of sexual attraction or embarrassment in others. The concept tends to have Arabic and Islamic associations in Indonesia. Accordingly, for many Muslims, it means that women, once they appear sexually mature, should cover their hair, neck, and cleavage, and other areas that might arouse sexual attraction. These need to be covered when they leave their house, when they are viewed by people outside of the immediate nuclear family (muhrim). For men, it means they should be covered from their stomach to their knees. However, different Islamic scholars and preachers give different interpretations about what the aurat includes, with some opining that the entire female body with the exception of hands and face needs to be covered. That said, the general disposition or habitus of using clothes to cover is also found among non-Muslims in Indonesia. Accordingly, Catholics, Protestants, and Hindus also tend to cover their legs and cleavage, and so on, more than would commonly be found in Western countries. Having outlined the literature and cultural context, we now turn to our case studies. The Veil and Indonesian Policewomen Our first case study focusses on Indonesian police. Aside from a practical significance in law enforcement, police also have symbolic importance. There is an ideal that police should set and enforce standards for exemplary behaviour. Despite this, the Indonesia police have an image problem, being seen as highly corrupt (Davies, Stone, & Buttle). This is where policewomen fit in. The female constabulary are thought to be capable of morally improving the police force and the nation. Additionally, Indonesian policewomen are believed to be needed in situations of family violence, for instance, and to bring a sensitive and humane approach. The moral significance of Indonesia's policewomen shows clearly through issues of their clothing, in particular, the veil. In 2005, it became illegal for Indonesian policewomen to wear the veil on duty. Various reasons were given for this ban. These included that police should present a secular image, showcasing a modern and progressive nation. But this was one border contest where policewomen were able to successfully fight back; in 2013, they won the right to wear the veil on duty. The arguments espoused by both sides during this debate were reflective of geo-political border disputes, and protagonists deployed words such as "sovereignty", "human rights", and "religious autonomy". But in the end it was the policewomen's narrative that best convinced the government that they had a right to wear the veil on duty. Possibly this is because by 2013 many politicians and policymakers wanted to present Indonesia as a pious nation and having policewomen able to express their religion – and the veil being imbued with sentiments of honesty and dedication – fitted in with this larger national image. In contrast, policewomen have been unsuccessful in efforts to ban so called virginity testing (discussed below). Indonesian Policewomen Need to Be Attractive But veils are not the only bodily border that can be packed around language used to describe a DMZ. Policewomen's physical appearance, and specifically facial appearance and make-up, are discussed in similar terms. As such another border that policewomen must present in a particular (i.e. beautiful) way is their appearance. As part of the selection process, women police candidates must be judged by a mostly male panel as being pretty. They have to be a certain height and weight, and bust measurements are taken. The image of the policewoman is tall, slim, and beautiful, with a veil or with regulation cut and coiffed hair. Recognising the 'importance' of beauty for policewomen, they are given a monthly allowance precisely to buy make-up. Such is the status of policewomen that entry is highly competitive. And those who make the cut accrue many benefits. One of these benefits can be celebrity status, and it is not unusual for some policewomen to have over 100,000 Instagram followers. This celebrity status has led one police official to publicly state that women should not join the police force thinking it is a shortcut to celebrity status (Davies). So just like a nation trying to present its best self, Indonesia is imagined in the image of its policewomen. Policewomen feel pride in being selected for this position even when feeling vexed about these barriers to getting selected (Davies). Another barrier to selection is discussed in the next case study. Virginity Testing of Policewomen Our second case study relates to the necessity that female police recruits be virgins. Since 1965, policewomen recruits have been required to undergo internal examinations to ensure that their hymen is supposedly intact. Glossed as 'virginity' tests this procedure involves a two-finger examination by a health professional. Protests against the practice have been voiced by Human Rights Watch and others (Human Rights Watch). Pledges have also been made that the practice will be removed. But to date the procedure is still performed, although there are currently moves to have it banned within the armed forces. Hymens are more of a skin border than a clothing border such as that formed by uniforms or veils, but they operate in similar ways. The ‘feelable’ hymen marks an unmarried woman as moral. New women police recruits must be unmarried and therefore virgins. Actually, the hymen is not a taut skin border, but rather a loose connection of overlapping tissue and in this sense a hymen is not something one can lose. But the hymen is used as a proxy to determine a woman’s value. Hymen border control gives one a moral edge. A hymen supposedly measures a woman’s ability to protect herself, like any fortified geo-political border. Protecting one’s own borders gives the suggestion that one is able to protect others. A policewoman who can protect her bodily borders can protect those of others. Outsiders may wonder what being attractive, modest, but not too modest has to do with police work. And some (but by no means all) Indonesian policewomen wondered the same thing too. Indeed, some policewomen Davies interviewed in the 2010s were against this practice, but many staunchly supported it. They had successfully passed this rite of passage and therefore felt a common bond with other new recruits who had also gone through this procedure. Typically rites of passage, and especially the accompanying humiliation and abuse, engender a strong sense of solidarity among those who have passed through them. The virginity test seems to have operated in a similar way. Policewomen and the 'Citayam' Street Fashion Our third case study is an analysis of a short and otherwise unremarkable TV news report about policewomen parading across a crosswalk in a remote regional city. To understand why, we need to turn to "Citayam Fashion Week", a youth social movement which has developed around a road crossing in downtown Jakarta. Social movements like this are difficult to pin down, but it seems that a central aspect has been young fashionistas using a zebra crossing on a busy Jakarta street as an impromptu catwalk to strut across, be seen, and photographed. These youths are referred to in one article as "Jakarta's budget fashionistas" (Saraswati). The movement is understood in social media and traditional media sources as expressing 'street fashion'. Social media has been central to this movement. The youths have posted photos and videos of themselves crossing the road on social media. Some of these young fashionistas posted interviews with each other on TikTok. Some of the interviews went viral in June 2022 (Saraswati). So where does the name "Citayam Fashion Week" come from? Citayam is an outer area of Jakarta, which is a long way from from the wealthy central district where the young fashionistas congregate. But "Citayam" does not mean that the youths are all thought to come from that area. Instead the idea is that they could be from any poorer outer areas around the capital and have bussed or trained into town. The crosswalk they strut across is near the transport hub next to a central train station. The English-language "Fashion Week" is a tongue-in-cheek label mocking the haute couture fashion weeks around the world – events which, due to a wealth and class gap, are closed off to these teens. Strutting on the crosswalk is not limited to a single 'week' but it is an ongoing activity. The movement has spread to other parts of Indonesia, with youth parading across cross walks in other urban centres. Citayam Fashion Week became one of the major Indonesian public issues of 2022. Reaction was mixed. Some pointed to the unique street style and attitude, act, and language of the young fashionistas, some of whom became minor celebrities. The "Citayam Fashion Week" idea was also picked up by mainstream media, attracting celebrities, models, content creators, politicians and other people in the public eye. Some government voices also welcomed the social movement as promoting tourism and the creative industry. Others voiced disapproval at the youth. Their clothes were disparaged as 'tacky', reflecting deep divides in class and income in modern Jakarta. Some officials noted that they are a nuisance because they create traffic jams and loitering. Criticism also had a moral angle, in particular with commentators focused on male teens wearing feminine attire (Saraswati). Social scientists such as Oki Rahadianto (Souisa & Salim) and Saraswati see this as an expression of youth agency. These authors particularly highlight the class origins of the Citayam fashionistas being mostly from poorer outer suburbs. Their fashion displays are seen to be a way of reclaiming space for the youth in the urban landscape. Furthermore, the youths are expressing their own and unique version of youth culture. We can use the idea of threshold to provide unique insight into this phenomenon in the simple sense that the crosswalk connects one side of the road to the other. But the youth use it for something far more significant than this simple practical purpose. What is perceived to be happening is that some of the youth, who after all are in the process of transitioning from childhood to adulthood, use the crosswalk to publicly express their transition to non-normative gender and sexual identities; indeed, some of them have also transitioned to become mini celebrities in the process. Images of 'Citayam' portray young males adorned in makeup and clothes that are not identifiably masculine. They appear to be crossing gender boundaries. Other images show the distinct street fashion of these youth of exposed skin through crop tops (short tops) that show the belly, clothes with cut-out sections on various parts of the body, and ripped jeans. In a way, these youth are transgressing the taboo against exposing too much skin in public. One video is particularly interesting in light of the approach we are taking in this article as it comes from Makassar, the capital of one of Indonesia's outlying regions. "The Citayam Fashion Week phenomenon spreads to Makassar; young people become traffic (lalu lintas) ambassadors" (Kompas TV) is a news report about policewomen getting involved with young people using a crosswalk to parade their fashion. At first glance the Citayam Fashion Week portrayed in Makassar, a small city in an outlying province, is tiny compared to the scale of the movement in Jakarta. The news report shows half a dozen young males in feminine clothing and makeup. Aside from several cars in the background, there is no observable traffic that the process seems to interrupt. The news report portrays several Indonesian policewomen, all veiled, assisting and accompanying the young fashionistas. The reporter explains that the policewomen go 'hand in hand' (menggandeng) with the fashionistas. The police attempt to harness the creative energy of the youth and turn them into traffic ambassadors (duta lalu lintas). Perhaps it is going too far to state, but the term for traffic here, lalu lintas ("lalu" means to pass by or pass through, and "lintas" means "to cross"), implies that the police are assisting them in crossing thresholds. In any case, from the perspective we have adopted in this chapter, Citayam Fashion Week can be analysed in terms of thresholds as a literal road crossing turned into a place where youth can cross over gender norms and class barriers. The policewomen, with their soft, feminine abilities, attempt to transform them into exemplary citizens. Discussion: Morality, Skin, and Borders In this article, we have actually passed over two apparent contradictions in Indonesian society. In the early 2000s, Indonesian policewomen recruits were required to prove their modesty by passing a virginity test in which their hymen was inspected. Yet, at the same time they needed to be attractive. And, moreover, they were not allowed to wear the Muslim veil. They had to be modest and protect themselves from male lust but also good-looking and visible to others. The other contradiction relates to a single crosswalk or zebra crossing in downtown Jakarta, Indonesia's capital city, in 2022. Instead of using this zebra crossing simply as a place to cross the road, some youths turned it to their own ends as an impromptu 'catwalk' and posted images of their fashion on Instagram. A kind of social movement has emerged whereby Indonesian youth are fashioning their identity that contravenes gender expectations. In an inconsequential news report on the Citayam Fashion Week in Makassar, policewomen were portrayed as co-opting and redirecting the movement into an instructional opportunity in orderly road crossing. The youths could thereby transformed into good citizens. Although the two phenomena – attractive modest police virgins and a crosswalk that became a catwalk – might seem distinct, underlying the paradoxes are similar issues which can be teased out by analysing them in terms of morality, gender, and clothing in relation to borders, buffer zones, and thresholds. Veils, hymens, clothes, make-up are all politically positioned as borders worth fighting for, as necessary borders. While some border disputes can be won (such as policewomen winning the right to veil on duty, or disrupting traffic by parading one's gender-bending fashion), others are either not challenged or unsuccessfully challenged (such as ending virginity tests). These borders of moral encounter enable and provoke various responses: the ban on veiling for Indonesian policewomen was something to challenge as it undermined women’s moral position and stopped their expression of piety – things their nation wanted them to be able to do. But fighting to stop virginity testing was not permissible because even suggesting a contestation implies immorality. Only the immoral could want to get rid of virginity tests. The Citayam Fashion Week presented potentially immoral youths who corrupt national values, but with the help of policewomen, literally and figuratively holding their hand, they could be transformed into worthwhile citizens. National values were at stake in clothing and skin. Conclusion Borders and buffer zone are crucial to a nation's image of itself; whether in the geographical shape of one's country, or in clothes and skin. Douglas suggests that the human experience of boundaries can symbolise society. If she is correct, Indonesian nationalist ideas about clothing, skin, and even hymens shape how Indonesians understand their own nation. Through the three case studies we argued firstly for the importance of analysing the fashioning of the body not only as a form of border maintenance, but as truly at the centre of understanding national morality in Indonesia. Secondly, the national border may also be a way to remake the individual. People see themselves in the 'shape' of their country. As Bille stated "like skin, borders are a protective integument as well as a surface of inscription. Like the body, the nation is skin deep" (71). Thresholds are just as they imply. Passing through a threshold, we cross over one side of the border. We can potentially occupy an in-between status in, for instance, demilitarised zones. Or we can continue on to the other side. To go over a threshold such as becoming a policewoman, a teenager, a fashionista, and a mini celebrity, a good citizen can be constituted through re-fashioning the body. Fashioning one's body can be done through adorning skin with makeup or clothes, covering or revealing the skin, including particular parts of the body deemed sacred, such as the aurat, or by maintaining a special type of skin such as the hymen. The skin that is re-fashioned thus becomes a site of border contention that we argue define not only personal but national identity. Acknowledgment This article was first presented by Sharyn Graham Davies as a plenary address on 24 November 2021 as part of the Women in Asia conference. References BBC News. "Hungarian Camerawoman Who Kicked Refugees Charged." 8 Sep. 2016. 3 Oct 2022 <https://www.bbc.com/news/world-europe-37304489>. Bennett, Linda Rae. 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