Journal articles: 'Disability Services Act 2011 (Tas)' – Grafiati (2024)

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Badan Penyelenggara Jaminan Sosial (BPJS) berfungsi menyelenggarakan program jaminan kesehatan secara nasional berdasarkan prinsip asuransi sosial dan prinsip ekuitas dengan tujuan menjamin agar peserta memperoleh manfaat kesehatan. Pasal 1 angka 2 Undang-Undang Nomor 24 Tahun 2011 tentang Badan Penyelenggara Jaminan Sosial menyatakan bahwa Jaminan sosial adalah salah satu bentuk perlidungan sosial untuk menjamin seluruh rakyat agar dapat memenuhi kebutuhan dasar hidupnya yang layak. Dalam Pasal 224, 225, dan 226 Undang-Undang Nomor 11 tahun 2006 tentang UUPA, kewajiban kepada Pemerintah Aceh untuk memberikan pelayanan kesehatan secara menyeluruh kepada penduduk Aceh terutama penduduk miskin, fakir miskin, anak yatim dan terlantar. Pasien BPJS Kelas 3 di beberapa Rumah Sakit di Kota Banda Aceh memerlukan perlindungan secara hukum dalam menerima pelayanan kesehatan yang bertujuan menjamin adanya kepastian hukum yang didapatkan oleh pasien, sehingga pasien terhindar dari kerugian saat menerima pelayanan kesehatan yang seharusnya diberikan secara baik dan optimal oleh tenaga kesehatan.Kerugian sebagaimana dimaksud berupa kerugian atas kerusakan, pencemaran, dan atau kerugian menderita penyakit/cacat sebagai akibat perbuatan/kesalahan dokter. Bentuk ganti kerugian berupa perawatan kesehatan dalam rangka memulihkan kondisi pasien, pengembalian uang atau pengembalian barang dan atau pemberian santunan yang sesuai dengan ketentuan perundang-undangan.National Social Security Agency (BPJS) has a function to conduct national health of social security based social insurance principle and equity principle aiming at securing the members in order to obtain the benefit of health care. Article 1 point 2 of the Act Number 24, 2011 regarding National Social Security Agency stipulates that Social Security is one of the forms of social protection in securing all people to fulfill basic need of proper lives. Articles 224, 225, and 226 of the Act Number 11, 2006 regarding Aceh Governance Act oblige the Aceh Government especially the poor, orphan and abandoned kids. Patients of the National Social Security Agency of Class 3 in several hospitals in Banda Aceh need law protection in providing health services aiming to secure the existence of law certainty acquired by the patients hence it prevents from the loss while accepting the health services that should be provided well and optimally by medical staffs. The loss aforementioned are damages, contamination, or suffering from illness/disability resulted from medical malpractice. The kinds of the loss are health care in recovering patients’ condition, compensating or returning things or the compensation that is not based on existing rules.

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BackgroundThere has been consistent evidence that people with learning disabilities experience health inequalities and poor NHS health-care provision, leading to avoidable harm and premature, avoidable death.ObjectivesTo describe the factors in NHS hospitals that promote or compromise a safe environment for patients with learning disabilities, in the light of national recommendations that hospitals should (1) identify patients with learning disabilities, (2) provide reasonably adjusted services, (3) involve carers as partners in care and (4) include patient and carer views in service development.DesignA 21-month mixed-method study carried out between 2011 and 2013, using questionnaire surveys, interviews, observation and monitoring of safety incidents.SettingSix NHS hospitals in the south of England.MethodsThe study employed mixed methodologies in three stages. Stage I involved mapping the systems and structural changes within each hospital site, with senior strategic managers asked to provide data on relevant policies. Stage II examined the effectiveness of implemented measures. Methods for this stage included an electronic questionnaire survey sent to all clinical staff (n = 990); face-to-face semi-structured interviews with clinical staff and strategic hospital managers (n = 68); semi-structured face-to-face interviews with adults with learning disabilities who had used the hospital in a 12-month period (n = 33); questionnaire survey (n = 88) and semi-structured interviews (n = 37) with carers of patients with learning disabilities who had been a patient during the 12-month period; and participant observation with patients (n = 8). Stage III assessed generalisability to other vulnerable patient groups and involved expert panel discussions with senior managers and senior clinicians at four sites (n = 42).ResultsExamples of good practice were not consistently replicated hospital-wide. The most common safety issues were delays and omissions of treatment and basic care. The main barriers to better and safer hospital care for people with learning disabilities were (1) the invisibility of patients with learning disabilities within hospitals, owing to a lack of effective flagging systems and a lack of staff knowledge and willingness to flag this group; (2) poor staff understanding of the specific vulnerabilities of people with learning disabilities, the reasonable adjustments to services that these patients may need and the Mental Capacity Act (Great Britain.Mental Capacity Act 2005. Chapter 9. London: The Stationery Office; 2005); (3) a lack of consistent and effective carer involvement and misunderstanding by staff of the carer role; and (4) a lack of clear lines of responsibility and accountability for the care of each patient with learning disabilities. The main enablers were the learning disability liaison nurse (LDLN), provided that this role was properly supported by senior management and carried sufficient authority to change practice; and ward managers who facilitated a positive ward culture and ensured consistent implementation of reasonable adjustments.ConclusionsThe vulnerabilities of people with learning disabilities can, and do, lead to compromised patient safety in NHS hospitals. Further research is needed as follows: (1) identifying the most frequently needed reasonable adjustments within the hospital care pathways of people with learning disabilities and their cost implications; (2) identifying the most effective structures for ensuring clear lines of responsibility and accountability for the care of patients with learning disabilities, including support needed by ward managers in order to carry day-to-day accountability; (3) investigating practical and effective ways of flagging patients with learning disabilities across NHS services and within NHS hospitals; (4) investigating, implementing and evaluating protocols for shared care; (5) evaluating LDLN posts nationwide; and (6) extending research recommendations (1) and (3) to patients with dementia and those with mental health problems.Study registrationComprehensive Clinical Research Network Portfolio, 10998; Integrated Research Application System Coordinated System for gaining NHS Permission, 74907.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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This paper aims to portray the overall picture of poverty in the world and mentions the key solution to overcome poverty from a critical perspective. The data and figures were quoted from a number of researchers and organizations in the field of poverty around the world. Simultaneously, the information strengthens the correlations among poverty and lack of education. Only appropriate philosophies of education can improve the country’s socio-economic conditions and contribute to effective solutions to worldwide poverty. In the 21st century, despite the rapid development of science and technology with a series of inventions brought into the world to make life more comfortable, human poverty remains a global problem, especially in developing countries. Poverty, according to Lister (2004), is reflected by the state of “low living standards and/or inability to participate fully in society because of lack of material resources” (p.7). The impact and serious consequences of poverty on multiple aspects of human life have been realized by different organizations and researchers from different contexts (Fraser, 2000; Lister, 2004; Lipman, 2004; Lister, 2008). This paper will indicate some of the concepts and research results on poverty. Figures and causes of poverty, and some solutions from education as a key breaker to poverty will also be discussed. Creating a universal definition of poverty is not simple (Nyasulu, 2010). There are conflicts among different groups of people defining poverty, based on different views and fields. Some writers, according to Nyasulu, tend to connect poverty with social problems, while others focus on political or other causes. However, the reality of poverty needs to be considered from different sides and ways; for that reason, the diversity of definitions assigned to poverty can help form the basis on which interventions are drawn (Ife and Tesoriero, 2006). For instance, in dealing with poverty issues, it is essential to intervene politically; economic intervention is very necessary to any definition of this matter. A political definition necessitates political interventions in dealing with poverty, and economic definitions inevitably lead to economic interventions. Similarly, Księżopolski (1999) uses several models to show the perspectives on poverty as marginal, motivation and socialist. These models look at poverty and solutions from different angles. Socialists, for example, emphasize the responsibilities of social organization. The state manages the micro levels and distributes the shares of national gross resources, at the same time fighting to maintain the narrow gap among classes. In his book, Księżopolski (1999) also emphasizes the changes and new values of charity funds or financial aid from churches or organizations recognized by the Poor Law. Speaking specifically, in the new stages poverty has been recognized differently, and support is also delivered in limited categories related to more specific and visible objectives, with the aim of helping the poor change their own status for sustainable improvement. Three ways of categorizing the poor and locating them in the appropriate places are (1) the powerless, (2) who is willing to work and (3) who is dodging work. Basically, poverty is determined not to belong to any specific cultures or politics; otherwise, it refers to the situation in which people’s earnings cannot support their minimum living standard (Rowntree, 1910). Human living standard is defined in Alfredsson & Eide’s work (1999) as follows: “Everyone has the right to a standard of living adequate for the health and well-being of himself and his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circ*mstances beyond his control.” (p. 524). In addition, poverty is measured by Global Hunger Index (GHI), which is calculated by the International Food Policy Institute (IFPRI) every year. The GHI measures hunger not only globally, but also by country and region. To have the figures multi-dimensionally, the GHI is based on three indicators: 1. Undernourishment: the proportion of the undernourished as a percentage of the population (reflecting the share of the population with insufficient calorie intake). 2. Child underweight: the proportion of children under age 5 who are underweight (low weight for their age, reflecting wasting, stunted growth or both), which is one indicator of child under-nutrition. 3. Child mortality: the mortality rate of children under 5 (partially reflecting the fatal synergy of inadequate dietary intake and unhealthy environments). Apart from the individual aspects and the above measurement based on nutrition, which help partly imagine poverty, poverty is more complicated, not just being closely related to human physical life but badly affecting spiritual life. According to Jones and Novak (1999 cited in Lister, 2008), poverty not only characterizes the precarious financial situation but also makes people self-deprecating. Poverty turns itself into the roots of shame, guilt, humiliation and resistance. It leads the poor to the end of the road, and they will never call for help except in the worst situations. Education can help people escape poverty or make it worse. In fact, inequality in education has stolen opportunity for fighting poverty from people in many places around the world, in both developed and developing countries (Lipman, 2004). Lipman confirms: “Students need an education that instills a sense of hope and possibility that they can make a difference in their own family, school, and community and in the broader national and global community while it prepare them for multiple life choices.” (p.181) Bradshaw (2005) synthesizes five main causes of poverty: (1) individual deficiencies, (2) cultural belief systems that support subcultures of poverty, (3) economic, political and social distortions or discrimination, (4) geographical disparities and (5) cumulative and cyclical interdependencies. The researcher suggests the most appropriate solution corresponding with each cause. This reflects the diverse causes of poverty; otherwise, poverty easily happens because of social and political issues. From the literature review, it can be said that poverty comes from complex causes and reasons, and is not a problem of any single individual or country. Poverty has brought about serious consequences and needs to be dealt with by many methods and collective effort of many countries and organizations. This paper will focus on representing some alarming figures on poverty, problems of poverty and then the education as a key breaker to poverty. According to a statistics in 2012 on poverty from the United Nations Development Program (UNDP), nearly half the world's population lives below the poverty line, of which is less than $1.25 a day . In a statistics in 2015, of every 1,000 children, 93 do not live to age 5 , and about 448 million babies are stillborn each year . Poverty in the world is happening alarmingly. According to a World Bank study, the risk of poverty continues to increase on a global scale and, of the 2009 slowdown in economic growth, which led to higher prices for fuel and food, further pushed 53 million people into poverty in addition to almost 155 million in 2008. From 1990 to 2009, the average GHI in the world decreased by nearly one-fifth. Many countries had success in solving the problem of child nutrition; however, the mortality rate of children under 5 and the proportion of undernourished people are still high. From 2011 to 2013, the number of hungry people in the world was estimated at 842 million, down 17 percent compared with the period 1990 to 1992, according to a report released by the Food and Agriculture Organization of the United Nations (FAO) titled “The State of Food Insecurity in the World 2013” . Although poverty in some African countries had been improved in this stage, sub-Saharan Africa still maintained an area with high the highest percentage of hungry people in the world. The consequences and big problems resulting from poverty are terrible in the extreme. The following will illustrate the overall picture under the issues of health, unemployment, education and society and politics ➢ Health issues: According a report by Manos Unidas, a non- government organization (NGO) in Spain , poverty kills more than 30,000 children under age 5 worldwide every day, and 11 million children die each year because of poverty. Currently, 42 million people are living with HIV, 39 million of them in developing countries. The Manos Unidas report also shows that 15 million children globally have been orphaned because of AIDS. Scientists predict that by 2020 a number of African countries will have lost a quarter of their population to this disease. Simultaneously, chronic drought and lack of clean water have not only hindered economic development but also caused disastrous consequences of serious diseases across Africa. In fact, only 58 percent of Africans have access to clean water; as a result, the average life expectancy in Africa is the lowest in the world, just 45 years old (Bui, 2010). ➢ Unemployment issues: According to the United Nations, the youth unemployment rate in Africa is the highest in the world: 25.6 percent in the Middle East and North Africa. Unemployment with growth rates of 10 percent a year is one of the key issues causing poverty in African and negatively affecting programs and development plans. Total African debt amounts to $425 billion (Bui, 2010). In addition, joblessness caused by the global economic downturn pushed more than 140 million people in Asia into extreme poverty in 2009, the International Labor Organization (ILO) warned in a report titled The Fallout in Asia, prepared for the High-Level Regional Forum on Responding to the Economic Crisis in Asia and the Pacific, in Manila from Feb. 18 to 20, 2009 . Surprisingly, this situation also happens in developed countries. About 12.5 million people in the United Kingdom (accounting for 20 percent of the population) are living below the poverty line, and in 2005, 35 million people in the United States could not live without charity. At present, 620 million people in Asia are living on less than $1 per day; half of them are in India and China, two countries whose economies are considered to be growing. ➢ Education issues: Going to school is one of the basic needs of human beings, but poor people cannot achieve it. Globally, 130 million children do not attend school, 55 percent of them girls, and 82 million children have lost their childhoods by marrying too soon (Bui, 2010). Similarly, two-thirds of the 759 million illiterate people in total are women. Specifically, the illiteracy rate in Africa keeps increasing, accounting for about 40 percent of the African population at age 15 and over 50 percent of women at age 25. The number of illiterate people in the six countries with the highest number of illiterate people in the world - China, India, Indonesia, Brazil, Bangladesh and Egypt - reached 510 million, accounting for 70 percent of total global illiteracy. ➢ Social and political issues: Poverty leads to a number of social problems and instability in political systems of countries around the world. Actually, 246 million children are underage labors, including 72 million under age 10. Simultaneously, according to an estimate by the United Nations (UN), about 100 million children worldwide are living on the streets. For years, Africa has suffered a chronic refugee problem, with more than 7 million refugees currently and over 200 million people without homes because of a series of internal conflicts and civil wars. Poverty threatens stability and development; it also directly influences human development. Solving the problems caused by poverty takes a lot of time and resources, but afterward they can focus on developing their societies. Poverty has become a global issue with political significance of particular importance. It is a potential cause of political and social instability, even leading to violence and war not only within a country, but also in the whole world. Poverty and injustice together have raised fierce conflicts in international relations; if these conflicts are not satisfactorily resolved by peaceful means, war will inevitably break out. Obviously, poverty plus lack of understanding lead to disastrous consequences such as population growth, depletion of water resources, energy scarcity, pollution, food shortages and serious diseases (especially HIV/AIDS), which are not easy to control; simultaneously, poverty plus injustice will cause international crimes such as terrorism, drug and human trafficking, and money laundering. Among recognizable four issues above which reflected the serious consequences of poverty, the third ones, education, if being prioritized in intervention over other issues in the fighting against poverty is believed to bring more effectiveness in resolving the problems from the roots. In fact, human being with the possibility of being educated resulted from their distinctive linguistic ability makes them differential from other beings species on the earth (Barrow and Woods 2006, p.22). With education, human can be aware and more critical with their situations, they are aimed with abilities to deal with social problems as well as adversity for a better life; however, inequality in education has stolen opportunity for fighting poverty from unprivileged people (Lipman, 2004). An appropriate education can help increase chances for human to deal with all of the issues related to poverty; simultaneously it can narrow the unexpected side-effect of making poverty worse. A number of philosophies from ancient Greek to contemporary era focus on the aspect of education with their own epistemology, for example, idealism of Plato encouraged students to be truth seekers and pragmatism of Dewey enhanced the individual needs of students (Gutex, 1997). Education, more later on, especially critical pedagogy focuses on developing people independently and critically which is essential for poor people to have ability of being aware of what they are facing and then to have equivalent solutions for their problems. In other words, critical pedagogy helps people emancipate themselves and from that they can contribute to transform the situations or society they live in. In this sense, in his most influential work titled “Pedagogy of the Oppressed” (1972), Paulo Freire carried out his critical pedagogy by building up a community network of peasants- the marginalized and unprivileged party in his context, aiming at awakening their awareness about who they are and their roles in society at that time. To do so, he involved the peasants into a problem-posing education which was different from the traditional model of banking education with the technique of dialogue. Dialogue wasn’t just simply for people to learn about each other; but it was for figuring out the same voice; more importantly, for cooperation to build a social network for changing society. The peasants in such an educational community would be relieved from stressfulness and the feeling of being outsiders when all of them could discuss and exchange ideas with each other about the issues from their “praxis”. Praxis which was derived from what people act and linked to some values in their social lives, was defined by Freire as “reflection and action upon the world in order to transform it” (p.50). Critical pedagogy dialogical approach in Pedagogy of the Oppressed of Freire seems to be one of the helpful ways for solving poverty for its close connection to the nature of equality. It doesn’t require any highly intellectual teachers who lead the process; instead, everything happens naturally and the answers are identified by the emancipation of the learners themselves. It can be said that the effectiveness of this pedagogy for people to escape poverty comes from its direct impact on human critical consciousness; from that, learners would be fully aware of their current situations and self- figure out the appropriate solutions for their own. In addition, equality which was one of the essences making learners in critical pedagogy intellectually emancipate was reflected via the work titled “The Ignorant Schoolmaster” by Jacques Rancière (1991). In this work, the teacher and students seemed to be equal in terms of the knowledge. The explicator- teacher Joseph Jacotot employed the interrogative approach which was discovered to be universal because “he taught what he didn’t know”. Obviously, this teacher taught French to Flemish students while he couldn’t speak his students’ language. The ignorance which was not used in the literal sense but a metaphor showed that learners can absolutely realize their capacity for self-emancipation without the traditional teaching of transmission of knowledge from teachers. Regarding this, Rancière (1991, p.17) stated “that every common person might conceive his human dignity, take the measure of his intellectual capacity, and decide how to use it”. This education is so meaningful for poor people by being able to evoking their courageousness to develop themselves when they always try to stay away from the community due the fact that poverty is the roots of shame, guilt, humiliation and resistance (Novak, 1999). The contribution of critical pedagogy to solving poverty by changing the consciousness of people from their immanence is summarized by Freire’s argument in his “Pedagogy of Indignation” as follows: “It is certain that men and women can change the world for the better, can make it less unjust, but they can do so from starting point of concrete reality they “come upon” in their generation. They cannot do it on the basis of reveries, false dreams, or pure illusion”. (p.31) To sum up, education could be an extremely helpful way of solving poverty regarding the possibilities from the applications of studies in critical pedagogy for educational and social issues. Therefore, among the world issues, poverty could be possibly resolved in accordance with the indigenous people’s understanding of their praxis, their actions, cognitive transformation, and the solutions with emancipation in terms of the following keynotes: First, because the poor are powerless, they usually fall into the states of self-deprecation, shame, guilt and humiliation, as previously mentioned. In other words, they usually build a barrier between themselves and society, or they resist changing their status. Therefore, approaching them is not a simple matter; it requires much time and the contributions of psychologists and sociologists in learning about their aspirations, as well as evoking and nurturing the will and capacities of individuals, then providing people with chances to carry out their own potential for overcoming obstacles in life. Second, poverty happens easily in remote areas not endowed with favorable conditions for development. People there haven’t had a lot of access to modern civilization; nor do they earn a lot of money for a better life. Low literacy, together with the lack of healthy forms of entertainment and despair about life without exit, easily lead people into drug addiction, gambling and alcoholism. In other words, the vicious circle of poverty and powerlessness usually leads the poor to a dead end. Above all, they are lonely and need to be listened to, shared with and led to escape from their states. Community meetings for exchanging ideas, communicating and immediate intervening, along with appropriate forms of entertainment, should be held frequently to meet the expectations of the poor, direct them to appropriate jobs and, step by step, change their favorite habits of entertainment. Last but not least, poor people should be encouraged to participate in social forums where they can both raise their voices about their situations and make valuable suggestions for dealing with their poverty. Children from poor families should be completely exempted from school fees to encourage them to go to school, and curriculum should also focus on raising community awareness of poverty issues through extracurricular and volunteer activities, such as meeting and talking with the community, helping poor people with odd jobs, or simply spending time listening to them. Not a matter of any individual country, poverty has become a major problem, a threat to the survival, stability and development of the world and humanity. Globalization has become a bridge linking countries; for that reason, instability in any country can directly and deeply affect the stability of others. The international community has been joining hands to solve poverty; many anti-poverty organizations, including FAO (Food and Agriculture Organization), BecA (the Biosciences eastern and central Africa), UN-REDD (the United Nations Programme on Reducing Emissions from Deforestation and Forest Degradation), BRAC (Building Resources Across Communities), UNDP (United Nations Development Programme), WHO (World Health Organization) and Manos Unidas, operate both regionally and internationally, making some achievements by reducing the number of hungry people, estimated 842 million in the period 1990 to 1992, by 17 percent in 2011- to 2013 . The diverse methods used to deal with poverty have invested billions of dollars in education, health and healing. The Millennium Development Goals set by UNDP put forward eight solutions for addressing issues related to poverty holistically: 1) Eradicate extreme poverty and hunger. 2) Achieve universal primary education. 3) Promote gender equality and empower women. 4) Reduce child mortality. 5) Improve maternal health. 6) Combat HIV/AIDS, malaria and other diseases. 7) Ensure environmental sustainability. 8) Develop a global partnership for development. Although all of the mentioned solutions carried out directly by countries and organizations not only focus on the roots of poverty but break its circle, it is recognized that the solutions do not emphasize the role of the poor themselves which a critical pedagogy does. More than anyone, the poor should have a sense of their poverty so that they can become responsible for their own fate and actively fight poverty instead of waiting for help. It is not different from the cores of critical theory in solving educational and political issues that the poor should be aware and conscious about their situation and reflected context. It is required a critical transformation from their own praxis which would allow them to go through a process of learning, sharing, solving problems, and leading to social movements. This is similar to the method of giving poor people fish hooks rather than giving them fish. The government and people of any country understand better than anyone else clearly the strengths and characteristics of their homelands. It follows that they can efficiently contribute to causing poverty, preventing the return of poverty, and solving consequences of the poverty in their countries by many ways, especially a critical pedagogy; and indirectly narrow the scale of poverty in the world. In a word, the wars against poverty take time, money, energy and human resources, and they are absolutely not simple to end. Again, the poor and the challenged should be educated to be fully aware of their situation to that they can overcome poverty themselves. They need to be respected and receive sharing from the community. All forms of discrimination should be condemned and excluded from human society. When whole communities join hands in solving this universal problem, the endless circle of poverty can be addressed definitely someday. More importantly, every country should be responsible for finding appropriate ways to overcome poverty before receiving supports from other countries as well as the poor self-conscious responsibilities about themselves before receiving supports from the others, but the methods leading them to emancipation for their own transformation and later the social change.

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The NDIS introduces changes to the level of control, choice and flexibility that persons with a disability can exercise over the services they require to support their individual needs. One of the main stays of NDIS is the ability for persons with a disability to utilise allocated funding how and with whom they choose to create a package of supports. Coinciding with the move towards the NDIS has been the introduction of the NSW WHS Act 2011. This Act introduces and broader new definitions relating to persons with responsibilities for ensuring health and safety at work. In some circ*mstances the individual person with a disability will be a direct employer, or an “other” in the workplace, and will take on responsibilities for health and safety for persons working in their home. For government organisations making funding decisions and allocating funds for the purchase of support services, there continues to be an obligation to ensure that services are conducted safely with risks to health adequately managed. NSW FACS can not “contract” out of their obligations. Instead we must work in partnership with all stakeholders to manage WHS risks as far as is reasonably practicable. Our role in government means we have the resources, experience, and must respond to the community expectation that we will support persons with a disability to understand and discharge their WHS obligations as far as is reasonably practicable. This is a way of operating presents the following questions: Do persons with disability understand the WHS obligations and risks associated with their care and supports? How to individuals with disability obtain sound advice and information on WHS risks that may be associated with their care arrangements? Can WHS information and resources that organisations like NSW Department of Family and Community Services (Ageing Disability and Home Care) have established be leverages to share with our “clients”? As Government partners in NDIS are we obligated to share our knowledge and information? What is the best way to bridge the gap in understanding and what types of information, tools and training can be made available on WHS for persons with a disability.A Joint WHS project currently underway within NSW FACS seeks to address the information and resources gap for all clients who participate in self directed funding arrangements (including NDIS). Our project will demonstrate how products and advice developed for internal staff use can be “reframed” and made accessible to persons with disability, their carers and individual service providers. The approach being applied within NSW FACS will potentially reduce costs in persons with disability being required to engage additional services to seek and develop WHS direct guidance and tools. The project being undertaken will deliver face to face training models, e-learning components and online information and tools to assist stakeholders in the NDIS and other Direct Funding Arrangements within NSW, to make informed decisions regarding WHS risk in the provision of care and support services. Guidance and information is provided on key risk areas utilising tested tools & WHS resources within the disability sector. E-learning solutions are made available to inform and train stakeholders of WHS obligations and potential risk management approaches. NSW FACS works with NGO stakeholders to ensure consistent advice and assistance is provided in the area of WHS obligations and performance expectations.

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IntroductionWithin Australia, the approach taken to the ways in which disabled people access television is heavily influenced by legislation and activism from abroad. This is increasingly the case as television moves to online modes of distribution where physical and legislative boundaries are more fluid. While early investigations of the intersections between television and the concept of abroad focused on the impacts of representation and national reputation (Boddy), the introduction of new media technologies saw a shifting focus towards the impact and introduction of new media technologies. Drawing on Chan’s definition of media internationalisation as “the process by which the ownership, structure, production, distribution, or content of a country’s media is influenced by foreign media interests, culture and markets” (Chan 71), this article considers the impacts of legislative and advocacy efforts abroad on Australian television audiences with disabilities accessing subscription Video on Demand (VOD).Subscription (VOD) services have caused a major shift in the way television is used and consumed in Australia. Prior to 2015, there was a small subscription VOD industry operating out of this country. Providers such as Quickflix had limited content and the bulk of VOD services used by Australians related to catch-up television, user-generated videos on YouTube or Vimeo, or accessing Netflix US illegally through virtual private networks (VPNs) and proxy services (Ryall; Lombato and Meese). VOD is distinct in that it is generally streamed over Internet-based online services and is not linear, giving viewers the opportunity to watch the video at any time once the programme is available. Unlike broadcast television, there is no particular government or corporate entity controlling the creation of VOD. These services take advantage of the time-shifted convenience of the medium. In addition, VOD is typically not terrestrial, traversing national boundaries and challenging audience expectations and legislative boundaries. This research is concerned with the subscriber model of VOD in Australia where subscribers pay a fee to gain access to large collections of content.This internationalising of television has also offered the opportunity for people with disabilities that previously excluded them from the practice of television consumption, to participate in this national pastime. On an international level, audio description is becoming more available on VOD than it is on broadcast television, thus allowing disabled people access to television. This article situates the Australian approach to VOD accessibility within a broader international framework to question whether the internationalisation of television has affected the ways in which of content is viewed, both at legislative and public levels. While providers are still governed by national regulations, these regulations are influenced by international legislation. Further, the presence and success of advocacy groups to agitate for change has exacerbated the way accessibility is viewed and defined in Australia. The role of the Accessible Netflix Project, in conjunction with changes in the 21st Century Communications and Video Accessibility Act (CVAA) in the USA, has not only reframed accessibility discourse in the US, but also, as companies such as Netflix move abroad, has potentially stimulated a shift in media accessibility standards in Australia.We focus in particular on the impact of three new services – Netflix Australia, Stan, and Presto Entertainment—which entered the Australian market in 2015. At the time, Australia was described as having entered the “streaming wars” and consumers were predicted to be the beneficiaries (Tucker). Despite international moves to improve the accessibility of VOD for disabled consumers, via legislation and advocacy, none of these providers launched with an accessibility policy in place. Even closed captions, whose provision on Australian broadcast television had been mandated via the broadcasting services act since the early 1990s, were conspicuously absent. The absence of audio description was less surprising. With the exception of a 12-week trial on the Australian Broadcasting Commission (ABC) in 2012 and a follow up trial on iView in 2015, audio description has never been available to Australian people who are vision impaired.The findings and methodology of this article are based on research into disability and streaming television in Australia, conducted in 2015 and 2016. Funded by the Australian Communications and Consumer Action Network (ACCAN), the 12-month project reviewed national and international policy; surveyed 145 people with disability; and conducted interviews with media professionals, policy advisors, accessibility advocates, and disabled Australian VOD consumers.Accessibility Abroad Impacting on Local Accessibility: The Netflix ModelDespite the lack of a clear accessibility policy, Netflix is in front in terms of accessibility, with captions available for most content. Audio description for some content became available in April 2015 shortly after its Australian launch. The introduction of this accessibility feature has been directly attributed to the advocacy efforts of the Accessible Netflix Project, an international online movement operating out of the US and advocating for improved accessibility of VOD in the US and abroad (Ellis & Kent). Similarly, Chris Mikul, author of Access on Demand, was interviewed as part of this research. He told us that Netflix’s provision of captions was due to the impacts of legislation in the USA, namely the CVAA. The CVAA, which we discuss later in the paper, while having no jurisdiction in Australia, has improved the availability of captions by mandating accessibility abroad. As a result, accessible content is imported into the Australian market. When Netflix introduced audio description on its original programming, the VOD provider described the access feature as an option customers could choose, “just like choosing the soundtrack in a different language” (Wright). However, despite successful trials, other VOD providers have not introduced audio description as a way to compete with Netflix, and there is no legislation in place regarding the provision of audio description in Australia. People with disability, including people with vision impairments, do use VOD and continue to have particular unmet access needs. As the Netflix example illustrates, both legislation and recognition of people with a disability as a key audience demographic will result in a more accessible television environment.Impact of International LegislationThe accessibility of VOD in Australia has been impacted upon by international legislation in three key ways: through comparative bench-marks, or industry expectations; via user-led expectations and awareness of differing policies and products; and also through the introduction of international providers onto the Australian VOD market, and the presence of parallel-import VOD services. While international VOD providers such as Netflix and iTunes have officially launched in Australia, Australian consumers, both prior to and after the official availability, often access the parallel USA versions of such services. Lombato and Meese theorise that the delays in content launches between the US and Australia, and the limitations caused by licensing agreements (reducing the content availability) have prompted the continued use of Netflix US and a “kind of transnational shop-front hopping” (126). This is significant for VOD content accessibility as it emphasises the effect of, and disparities in national legislation, whereby the same company provides accessible content only in locations in which it is subject to legal requirements. Our analysis of international policy regarding the accessibility of VOD has found a varied approach—from a complete absence of accessibility regulations (New Zealand), to a layering of policy through disability discrimination acts alongside new media laws (USA). Additionally, this need to address convergence and new media in media accessibility regulation is currently a subject being discussed at government levels in some countries, primarily in the UK (ATVOD). However, outside of the USA, there remains either a lack of accessibility policies for media, new or old—as is the case in Singapore—or a lack of policies that facilitate accessibility for the VOD market—such as in Australia where a level of accessibility is required for broadcasters and subscription television but not VOD.While these changes and advancements in accessibility are taking place abroad, the space that online businesses occupy is fluid. The accessibility requirements of physical spaces cross national boundaries, and operate across multiple media and technologies, and thus, multiple media laws. For example, Australian television broadcasters are subject to some captioning requirements, yet VOD is not. Furthermore, catch-up VOD services provided by mainstream Australian television broadcasters are not subject to these laws. While legislation that accommodates convergence and the new digital media landscape is logical (ACMA) there remain few examples globally that have made changes to reflect accessibility requirements in this context. The CVAA in the US is perhaps the most effective to date, specifically addressing the issue of access to modern communications for people with disability.The CVAA and CaptioningThe CVAA seeks to ensure that “accessibility laws enacted in the 1980s and 1990s are brought up to date with 21st century technologies, including new digital, broadband, and mobile innovations” (FCC). The CVAA is designed to be forward-thinking and evolve with changing technologies (Varley). As such, the Act has been distinctive in its approach to accessibility for Internet protocol delivered video programming, including VOD. While full accessibility requirements, such as the inclusion of audio description are not addressed, the Act is considered to be the most accessible globally in its requirements for captioning of all content—specifically, English and Spanish—across cable, broadcast, satellite, and VOD content. VOD apps, plug-ins and devices are also required to implement the complete captioning capabilities, with specific requirements for personalised presentation, colour, size, and fonts. This requirement is applied to video programming distributors and to video programming owners. Indeed, programmers are expected to provide captioning compliance certificates, and distributors are required to report a failure to do so. Quality standards have also been established, with an emphasis not simply on the presence of captioning, but also on accuracy, synchronicity, completeness, and appropriate placement of captions. Despite an absence of similar legislation locally, the impacts of these foreign interests will penetrate the Australian market.In Australia, the example set by the CVAA has warranted recommendations by the ACMA and Media Access Australia. In a recent interview, Chris Mikul reinforced the position that, in order for the accessibility of VOD to improve in Australia, a similar Act is needed to the one established in the US. According to Mikul, “The CVAA in the US bridges the gap to some extent with captioning, although it doesn’t venture into online audio description. […] We need something like the CVAA here” (Mikul).Beyond the impact of the CVAA on US VOD programming, the Americans with Disabilities Act (ADA) (1990) has been significant in the developing captioning requirements of the CVAA. In 2010, disability advocates seeking more accessible VOD services attempted to prosecute Netflix under the ADA. The National Association for the Deaf (NAD) argued that Netflix discriminated against those with a hearing impairment by not providing closed captions for all content. At this time, the CVAA did not include captioning requirements for VOD providers. Instead, it was argued that online businesses should be considered as a “place” of publication accommodation, and thus subject to the same standards and anti-discrimination laws. Netflix settled out of court in 2012, agreeing to caption 100% of its content by 2014 (Mullin; Wolford). However, a Federal Appeals Court later ruled that Netflix was not a place of public accommodation and therefore did not have to comply with the ruling (Hattem). Notably, during the case Netflix also argued that it should not be required to provide captions, as it was abiding by CVAA requirements at that time.Accessibility Activism and AdvocacyAdvocates for accessibility, such as the NAD, have impacted not only on the legislative framework for VOD in the USA, but also on the international public perception and expectation of accessibility. It is important to note that many of the help forums generated by international VOD providers mix customers from multiple countries, establishing a global space in which requirements, expectations and perceptions are shared. These spaces generate a transnational accessibility, providing an awareness of what provisions are being made in other countries, and where they are not. Orrego-Carmona conducted a study on subtitling for the purpose of language translation and found the globalisation of audio-visual content and international media flows have impacted on the public view of subtitling. Indeed, this finding can be extended to subtitling for people with disability. In the help forums for VOD providers, users identified an awareness of other more accessible media environments (such as whether companies provided closed captions in other countries), the impact of legislation in other countries on accessibility, and how or if international media companies were replicating accessibility standards transnationally. Social media campaigns, instigated in both the UK and the US are significant examples of consumer and public-led activism for accessibility. “LOVEFiLM hates deaf people”, #subtitleit, launched by the Action on Hearing Loss group in the UK, and #withcaptions, were all effective online campaigns launched by individuals and disability activist groups. In early 2014, comedian Mark Thomas, as part of his show 100 Acts of Minor Dissent, placed two large posters at the entrance to the offices of Amazon UK stating "LOVEFiLM hates deaf people." A subsequent petition through change.com attracted 15154 signatures, asking for rental DVDs that were subtitled to be listed, and all streamed content to be subtitled (https://www.change.org/p/lovefilm-amazon-prime-video-amazon-uk-please-list-your-subtitled-rental-dvds-and-subtitle-your-streamed-content). A year later, Amazon increased the subtitling of its content to 40 percent. As of June 2015 the company was working towards 100% subtitling. The petition turned its attention to Sky On Demand, initiated by Jamie Danjoux, a 17-year-old boy with hearing loss (https://www.change.org/p/sky-enable-subtitles-for-ondemand), has attracted 6556 signatures. The social media campaigns #subtitleit and #withcaptions similarly aimed to target both VOD providers and the government, with the aim for both consistent and compulsory captioning across all VOD content. While UK legislation is yet to specifically address VOD captioning, the subject of accessibility and VOD is currently being debated at policy level. It was also successful in gaining commitments from Sky and BT TV to improve subtitles for their VOD and catch-up VOD programming.In the USA, The Accessible Netflix Project and founder Robert Kingett have been significant advocates for the inclusion of audio description on Netflix and other US VOD providers. Further, while the Accessible Netflix Project has a focus on the United States, its prominence and effectiveness has facilitated awareness of the accessibility of VOD transnationally, and the group internally monitors and comments on international examples. This group was integral in persuading Netflix to provide audio descriptions, a move that has impacted on the level of accessibility worldwide.These advocacy efforts abroad have not only included Australian audiences via their invitations to participate in transnational online spaces, but their success also has direct impact on the availability of captions and audio description imported to Australian video on demand consumers. ConclusionThe national borders of television have always been permeable—with content from abroad influencing programming and culture. However, within Australia, borders have been erected around the television culture with long wait times between shows airing abroad and locally. In addition, licencing deals between overseas distributors and pay television have delayed the introduction of VOD until 2015. That year saw the introduction of three VOD providers to the Australian television landscape: Stan, Presto Entertainment, and Netflix Australia. With the introduction of VOD, it is not only international content that has altered television consumption. Overseas providers have established a firm place in the Australia television marketplace. Even before the formal launch of overseas VOD providers, disabled users were accessing content from providers such as Netflix USA via VPNs and tunnelling services, illustrating both the clear demand for VOD content, and demonstrating the multiple ways in which international legislation and provider approaches to accessibility have permeated the Australian television industry.The rapid increase of ways in which we watch television has increased its accessibility. The nature of video on demand—streamed online and nonlinear—means that the content accessed is no longer as restricted by space, time and television. Audiences are able to personalise and modify access, and can use multiple devices, with multiple assistive technologies and aids. This increasingly accessible environment is the result of legislative and advocacy efforts originating in other countries. Efforts to improve captions and introduce audio description, while not originating in Australia, have seen improvements to the availability of accessibility features for disabled Australian television audiences. To return to Chan’s definition of media internationalisation with which we began this article, a concern with television accessibility while not originating in Australia, has taken place due to the influence of “foreign media interests, culture and markets” (Chan 71).However, despite the increased potential for full accessibility, there remains deficits. Captions and audio description, the two main features that support the playback of online video content in an accessible way, are not consistently provided. There are no clear, applicable legislative requirements for VOD accessibility in Australia. This must change. Based on our research, change at government, industry and advocacy levels are required in order for VOD in Australia to become fully accessible. Legislation needs to be introduced that requires a minimum level of accessibility, including audio description accessibility, on broadcast television and VOD. Further, governments should work to ensure that PWD are aware of the accessibility features that are provided across all media. For VOD providers, it should be recognised that a significant portion of the consumer base could be PWD, or their families and friends may wish to share in the activity of VOD. Establishing an understanding of the different accessibility requirements may come from hiring specialised accessibility consultants to make platforms accessible and useable for PWD. For consumers of VOD and advocates of accessibility, participation in advocacy efforts that encourage and demand that VOD providers improve accessibility options have been shown to increase accessibility abroad, and should be applied to the Australian context.ReferencesACMA. Australian Government. Converged Legislative Frameworks: International Approaches. Jul. 2011. 1 Aug. 2016 <http://www.acma.gov.au/theACMA/Library/researchacma/Occasional-papers/coverged-legislative-frameworks-international-approaches>.ATVOD. Provision of Video on Demand Access Services: A Report on the Level of Provision by On Demand. UK: The Authority for Television on Demand, 18 Dec. 2015. 13 May 2016 <http://stakeholders.ofcom.org.uk/binaries/broadcast/on-demand/accesseuropean/AS_survey_report_2015.pdf>.Boddy, William. "U.S. Television Abroad: Market Power and National Introspection." Quarterly Review of Film and Video 15.2 (1994): 45-55.Chan, Joseph Man. "Media Internationalization in China: Processes and Tensions." Journal of Communication 44.3 (1994): 70-88.Ellis, Katie, and Mike Kent. "Accessible Television: The New Frontier in Disability Media Studies Brings Together Industry Innovation, Government Legislation and Online Activism." First Monday 20 (2015). <http://firstmonday.org/ojs/index.php/fm/article/view/6170>.FCC. 21st Century Communications and Video Accessibility Act (CVAA) 2010. USA: Federal Communications Commission. 27 May 2016 <https://www.fcc.gov/consumers/guides/21st-century-communications-and-video-accessibility-act-cvaa>.Hattem, Julian. “Court: Netflix Doesn’t Have to Comply with Disability Law.” The Hill, 3 Apr. 2015. 20 Aug. 2015 <http://thehill.com/policy/technology/237829-court-netflix-doesnt-have-to-comply-with-disability-law>.Lombato, Roman, and James Meese, eds. “Australia: Circumnavigation Goes Mainstream.” Geoblocking and Global Video Culture. Amsterdam: Institute of Network Cultures, 2016.Media Access Australia. “Policy and Expectations: What You Can Expect on Free-to-air Television.” Australia: Media Access Australia, 2013. 27 May 2016 <http://www.mediaaccess.org.au/tv-video/policy-and-expectations>.Mullin, Joe. “Netflix Settles with Deaf-Rights Group, Agrees to Caption All Videos by 2014.” Arstechnica 11 Oct. 2012. 1 Jan. 2014 <http://arstechnica.com/tech-policy/2012/10/netflix-settles-with-deaf-rights-group-agrees-to-caption-all-videos-by-2014/>.Orrego-Carmona, Daniel. “Subtitling, Video Consumption and Viewers.” Translation Spaces 3 (2014): 51-70.Ryall, Jenni. “How Netflix Is Dominating Australia from Abroad.” Mashable Australia 14 Jul. 2014. 14 Sep. 2016 <http://mashable.com/2014/07/14/how-netflix-is-dominating-australia-from-abroad/#kI9Af70FngqW>.Tucker, Harry. “Netflix Leads the Streaming Wars, Followed by Foxtel’s Presto.” News.com.au 24 Jun. 2015. 18 May 2016 <http://www.news.com.au/technology/home-entertainment/tv/netflix-leads- the-streaming-wars-followed-by-foxtels-presto/news story/7adf45dcd7d9486ff47ec5ea5951287f>.Unites States Government. Americans with Disabilities Act of 1990. 27 May 2016 <http://www.ada.gov/pubs/adastatute08.htm>.Varley, Alex. “New Access for a New Century: We Sit Down with Karen Peltz Strauss.” Media Access Australia 28 Aug. 2013. 27 May 2016 <http://www.mediaaccess.org.au/latest_news/australian-policy-and-legislation/new-access-for-a- new-century>.Wolford, Josh. “Netflix Will Caption All Streaming Videos by 2014, per Settlement.” WebProNews, 11 Oct. 2012. 1 Jan. 2014 <http://www.webpronews.com/netflix-will-caption-all-streaming-videos-by-2014-per-settlement-2012-10/>.Wright, Tracey. “Netflix Begins Audio Description for Visually Impaired.” Netflix, 14 Apr. 2015. 5 June 2016 <http://blog.netflix.com/2015/04/netflix-begins-audio-description-for.html>.

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Background: Early intervention (EI) services are designed to promote the development of skills and enhance the quality of life of infants and toddlers who have been identified as having a disability or developmental delay, enhance capacity of families to care for their child with special needs, reduce future educational costs, and promote independent living (NECTAC 2011). EI services are regulated by Part C of the Individuals with Disabilities Education Improvement Act (IDEA); however, personnel shortages, particularly in rural areas, limit access for children who qualify. Telehealth is an emerging delivery model demonstrating potential to deliver EI services effectively and efficiently, thereby improving access and ameliorating the impact of provider shortages in underserved areas. The use of a telehealth delivery model facilitates inter-disciplinary collaboration, coordinated care, and consultation with specialists not available within a local community. Method: A survey sent by the National Early Childhood Technical Assistance Center (NECTAC) to IDEA Part C coordinators assessed their utilization of telehealth within states’ IDEA Part C programs. Reimbursem*nt for provider type and services and barriers to implement a telehealth service delivery model were identified. Results: Representatives from 26 states and one jurisdiction responded to the NECTAC telehealth survey. Of these, 30% (n=9) indicated that they are either currently using telehealth as an adjunct service delivery model (n=6) or plan to incorporate telehealth within the next 1-2 years (n=3). Identified telehealth providers included developmental specialists, teachers of the Deaf/Hard of Hearing (DHH), speech-language pathologists, occupational therapists, physical therapists, behavior specialists, audiologists, and interpreters. Reimbursem*nt was variable and included use of IDEA Part C funding, Medicaid, and private insurance. Expressed barriers and concerns for the implementation of telehealth as a delivery model within Part C programming included security issues (40%; n=11); privacy issues (44%; n=12); concerns about quality of services delivered via telehealth (40%; n=11); and lack of evidence to support the effectiveness of a telehealth service delivery model within IDEA Part C programming (3%; n=1). Reimbursem*nt policy and billing processes and technology infrastructure were also identified as barriers impacting the implementation of telehealth programming. Conclusions: Provider shortages impact the quantity and quality of services available for children with disabilities and developmental delay, particularly in rural areas. While many states are incorporating telehealth within their Early Intervention (IDEA Part C) services in order to improve access and overcome personnel shortages, barriers persist. Policy development, education of stakeholders, research, utilization of secure and private delivery platforms, and advocacy may facilitate more widespread adoption of telehealth within IDEA Part C programs across the country.

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IntroductionSupermarkets are functionally challenging environments for people with vision impairments. A supermarket is likely to house an average of 45,000 products in a median floor-space of 4,529 square meters and many visually impaired people are unable to shop without assistance, which greatly impedes personal independence (Nicholson et al.). The task of selecting goods in a supermarket is an “activity that is expressive of agency, identity and creativity” (Sutherland) from which many vision-impaired persons are excluded. In response to this, a number of proof of concept (demonstrating feasibility) and prototype assistive technologies are being developed which aim to use smart phones as potential sensorial aides for vision impaired persons. In this paper, I discuss two such prototypic technologies, Shop Talk and BlindShopping. I engage with this issue’s list theme by suggesting that, on the one hand, list making is a uniquely human activity that demonstrates our need for order, reliance on memory, reveals our idiosyncrasies, and provides insights into our private lives (Keaggy 12). On the other hand, lists feature in the creation of spatial inventories that represent physical environments (Perec 3-4, 9-10). The use of lists in the architecture of assistive technologies for shopping illuminates the interaction between these two modalities of list use where items contained in a list are not only textual but also cartographic elements that link the material and immaterial in space and time (Haber 63). I argue that despite the emancipatory potential of assistive shopping technologies, their efficacy in practical situations is highly dependent on the extent to which they can integrate a number of lists to produce representations of space that are meaningful for vision impaired users. I suggest that the extent to which these prototypes may translate to becoming commercially viable, widely adopted technologies is heavily reliant upon commercial and institutional infrastructures, data sources, and regulation. Thus, their design, manufacture and adoption-potential are shaped by the extent to which certain data inventories are accessible and made interoperable. To overcome such constraints, it is important to better understand the “spatial syntax” associated with the shopping task for a vision impaired person; that is, the connected ordering of real and virtual spatial elements that result in a supermarket as a knowable space within which an assisted “spatial practice” of shopping can occur (Kellerman 148, Lefebvre 16).In what follows, I use the concept of lists to discuss the production of supermarket-space in relation to the enabling and disabling potentials of assistive technologies. First, I discuss mobile digital technologies relative to disability and impairment and describe how the shopping task produces a disabling spatial practice. Second, I present a case study showing how assistive technologies function in aiding vision impaired users in completing the task of supermarket shopping. Third, I discuss various factors that may inhibit the liberating potential of technology assisted shopping by vision-impaired people. Addressing Shopping as a Disabling Spatial Practice Consider how a shopping list might inform one’s experience of supermarket space. The way shopping lists are written demonstrate the variability in the logic that governs list writing. As Bill Keaggy demonstrates in his found shopping list Web project and subsequent book, Milk, Eggs, Vodka, a shopping list may be written on a variety of materials, be arranged in a number of orientations, and the writer may use differing textual attributes, such as size or underlining to show emphasis. The writer may use longhand, abbreviate, write neatly, scribble, and use an array of alternate spelling and naming conventions. For example, items may be listed based on knowledge of the location of products, they may be arranged on a list as a result of an inventory of a pantry or fridge, or they may be copied in the order they appear in a recipe. Whilst shopping, some may follow strictly the order of their list, crossing back and forth between aisles. Some may work through their list item-by-item, perhaps forward scanning to achieve greater economies of time and space. As a person shops, their memory may be stimulated by visual cues reminding them of products they need that may not be included on their list. For the vision impaired, this task is near impossible to complete without the assistance of a relative, friend, agency volunteer, or store employee. Such forms of assistance are often unsatisfactory, as delays may be caused due to the unavailability of an assistant, or the assistant having limited literacy, knowledge, or patience to adequately meet the shopper’s needs. Home delivery services, though readily available, impede personal independence (Nicholson et al.). Katie Ellis and Mike Kent argue that “an impairment becomes a disability due to the impact of prevailing ableist social structures” (3). It can be said, then, that supermarkets function as a disability producing space for the vision impaired shopper. For the vision impaired, a supermarket is a “hegemonic modern visual infrastructure” where, for example, merchandisers may reposition items regularly to induce customers to explore areas of the shop that they wouldn’t usually, a move which adds to the difficulty faced by those customers with impaired vision who work on the assumption that items remain as they usually are (Schillmeier 161).In addressing this issue, much emphasis has been placed on the potential of mobile communications technologies in affording vision impaired users greater mobility and flexibility (Jolley 27). However, as Gerard Goggin argues, the adoption of mobile communication technologies has not necessarily “gone hand in hand with new personal and collective possibilities” given the limited access to standard features, even if the device is text-to-speech enabled (98). Issues with Digital Rights Management (DRM) limit the way a device accesses and reproduces information, and confusion over whether audio rights are needed to convert text-to-speech, impede the accessibility of mobile communications technologies for vision impaired users (Ellis and Kent 136). Accessibility and functionality issues like these arise out of the needs, desires, and expectations of the visually impaired as a user group being considered as an afterthought as opposed to a significant factor in the early phases of design and prototyping (Goggin 89). Thus, the development of assistive technologies for the vision impaired has been left to third parties who must adopt their solutions to fit within certain technical parameters. It is valuable to consider what is involved in the task of shopping in order to appreciate the considerations that must be made in the design of shopping intended assistive technologies. Shopping generally consists of five sub-tasks: travelling to the store; finding items in-store; paying for and bagging items at the register; exiting the store and getting home; and, the often overlooked task of putting items away once at home. In this process supermarkets exhibit a “trichotomous spatial ontology” consisting of locomotor space that a shopper moves around the store, haptic space in the immediate vicinity of the shopper, and search space where individual products are located (Nicholson et al.). In completing these tasks, a shopper will constantly be moving through and switching between all three of these spaces. In the next section I examine how assistive technologies function in producing supermarkets as both enabling and disabling spaces for the vision impaired. Assistive Technologies for Vision Impaired ShoppersJason Farman (43) and Adriana de Douza e Silva both argue that in many ways spaces have always acted as information interfaces where data of all types can reside. Global Positioning System (GPS), Radio Frequency Identification (RFID), and Quick Response (QR) codes all allow for practically every spatial encounter to be an encounter with information. Site-specific and location-aware technologies address the desire for meaningful representations of space for use in everyday situations by the vision impaired. Further, the possibility of an “always-on” connection to spatial information via a mobile phone with WiFi or 3G connections transforms spatial experience by “enfolding remote [and latent] contexts inside the present context” (de Souza e Silva). A range of GPS navigation systems adapted for vision-impaired users are currently on the market. Typically, these systems convert GPS information into text-to-speech instructions and are either standalone devices, such as the Trekker Breeze, or they use the compass, accelerometer, and 3G or WiFi functions found on most smart phones, such as Loadstone. Whilst both these products are adequate in guiding a vision-impaired user from their home to a supermarket, there are significant differences in their interfaces and data architectures. Trekker Breeze is a standalone hardware device that produces talking menus, maps, and GPS information. While its navigation functionality relies on a worldwide radio-navigation system that uses a constellation of 24 satellites to triangulate one’s position (May and LaPierre 263-64), its map and text-to-speech functionality relies on data on a DVD provided with the unit. Loadstone is an open source software system for Nokia devices that has been developed within the vision-impaired community. Loadstone is built on GNU General Public License (GPL) software and is developed from private and user based funding; this overcomes the issue of Trekker Breeze’s reliance on trading policies and pricing models of the few global vendors of satellite navigation data. Both products have significant shortcomings if viewed in the broader context of the five sub-tasks involved in shopping described above. Trekker Breeze and Loadstone require that additional devices be connected to it. In the case of Trekker Breeze it is a tactile keypad, and with Loadstone it is an aftermarket screen reader. To function optimally, Trekker Breeze requires that routes be pre-recorded and, according to a review conducted by the American Foundation for the Blind, it requires a 30-minute warm up time to properly orient itself. Both Trekker Breeze and Loadstone allow users to create and share Points of Interest (POI) databases showing the location of various places along a given route. Non-standard or duplicated user generated content in POI databases may, however, have a negative effect on usability (Ellis and Kent 2). Furthermore, GPS-based navigation systems are accurate to approximately ten metres, which means that users must rely on their own mobility skills when they are required to change direction or stop for traffic. This issue with GPS accuracy is more pronounced when a vision-impaired user is approaching a supermarket where they are likely to encounter environmental hazards with greater frequency and both pedestrian and vehicular traffic in greater density. Here the relations between space defined and spaces poorly defined or undefined by the GPS device interact to produce the supermarket surrounds as a disabling space (Galloway). Prototype Systems for Supermarket Navigation and Product SelectionIn the discussion to follow, I look at two prototype systems using QR codes and RFID that are designed to be used in-store by vision-impaired shoppers. Shop Talk is a proof of concept system developed by researchers at Utah State University that uses synthetic verbal route directions to assist vision impaired shoppers with supermarket navigation, product search, and selection (Nicholson et al.). Its hardware consists of a portable computational unit, a numeric keypad, a wireless barcode scanner and base station, headphones for the user to receive the synthetic speech instructions, a USB hub to connect all the components, and a backpack to carry them (with the exception of the barcode scanner) which has been slightly modified with a plastic stabiliser to assist in correct positioning. Shop Talk represents the supermarket environment using two data structures. The first is comprised of two elements: a topological map of locomotor space that allows for directional labels of “left,” “right,” and “forward,” to be added to the supermarket floor plan; and, for navigation of haptic space, the supermarket inventory management system, which is used to create verbal descriptions of product information. The second data structure is a Barcode Connectivity Matrix (BCM), which associates each shelf barcode with several pieces of information such as aisle, aisle side, section, shelf, position, Universal Product Code (UPC) barcode, product description, and price. Nicholson et al. suggest that one of their “most immediate objectives for future work is to migrate the system to a more conventional mobile platform” such as a smart phone (see Mobile Shopping). The Personalisable Interactions with Resources on AMI-Enabled Mobile Dynamic Environments (PRIAmIDE) research group at the University of Deusto is also approaching Ambient Assisted Living (AAL) by exploring the smart phone’s sensing, communication, computing, and storage potential. As part of their work, the prototype system, BlindShopping, was developed to address the issue of assisted shopping using entirely off-the-shelf technology with minimal environmental adjustments to navigate the store and search, browse and select products (López-de-Ipiña et al. 34). Blind Shopping’s architecture is based on three components. Firstly, a navigation system provides the user with synthetic verbal instructions to users via headphones connected to the smart phone device being used in order to guide them around the store. This requires a RFID reader to be attached to the tip of the user’s white cane and road-marking-like RFID tag lines to be distributed throughout the aisles. A smartphone application processes the RFID data that is received by the smart phone via Bluetooth generating the verbal navigation commands as a result. Products are recognised by pointing a QR code reader enabled smart phone at an embossed code located on a shelf. The system is managed by a Rich Internet Application (RIA) interface, which operates by Web browser, and is used to register the RFID tags situated in the aisles and the QR codes located on shelves (López-de-Ipiña and 37-38). A typical use-scenario for Blind Shopping involves a user activating the system by tracing an “L” on the screen or issuing the “Location” voice command, which activates the supermarket navigation system which then asks the user to either touch an RFID floor marking with their cane or scan a QR code on a nearby shelf to orient the system. The application then asks the user to dictate the product or category of product that they wish to locate. The smart phone maintains a continuous Bluetooth connection with the RFID reader to keep track of user location at all times. By drawing a “P” or issuing the “Product” voice command, a user can switch the device into product recognition mode where the smart phone camera is pointed at an embossed QR code on a shelf to retrieve information about a product such as manufacturer, name, weight, and price, via synthetic speech (López-de-Ipiña et al. 38-39). Despite both systems aiming to operate with as little environmental adjustment as possible, as well as minimise the extent to which a supermarket would need to allocate infrastructural, administrative, and human resources to implementing assistive technologies for vision impaired shoppers, there will undoubtedly be significant establishment and maintenance costs associated with the adoption of production versions of systems resembling either prototype described in this paper. As both systems rely on data obtained from a server by invoking Web services, supermarkets would need to provide in-store WiFi. Further, both systems’ dependence on store inventory data would mean that commercial versions of either of these systems are likely to be supermarket specific or exclusive given that there will be policies in place that forbid access to inventory systems, which contain pricing information to third parties. Secondly, an assumption in the design of both prototypes is that the shopping task ends with the user arriving at home; this overlooks the important task of being able to recognise products in order to put them away or to use at a later time.The BCM and QR product recognition components of both respective prototypic systems associates information to products in order to assist users in the product search and selection sub-tasks. However, information such as use-by dates, discount offers, country of manufacture, country of manufacturer’s origin, nutritional information, and the labelling of products as Halal, Kosher, containing alcohol, nuts, gluten, lactose, phenylalanine, and so on, create further challenges in how different data sources are managed within the devices’ software architecture. The reliance of both systems on existing smartphone technology is also problematic. Changes in the production and uptake of mobile communication devices, and the software that they operate on, occurs rapidly. Once the fit-out of a retail space with the necessary instrumentation in order to accommodate a particular system has occurred, this system is unlikely to be able to cater to the requirement for frequent upgrades, as built environments are less flexible in the upgrading of their technological infrastructure (Kellerman 148). This sets up a scenario where the supermarket may persist as a disabling space due to a gap between the functional capacities of applications designed for mobile communication devices and the environments in which they are to be used. Lists and Disabling Spatial PracticeThe development and provision of access to assistive technologies and the data they rely upon is a commercial issue (Ellis and Kent 7). The use of assistive technologies in supermarket-spaces that rely on the inter-functional coordination of multiple inventories may have the unintended effect of excluding people with disabilities from access to legitimate content (Ellis and Kent 7). With de Certeau, we can ask of supermarket-space “What spatial practices correspond, in the area where discipline is manipulated, to these apparatuses that produce a disciplinary space?" (96).In designing assistive technologies, such as those discussed in this paper, developers must strive to achieve integration across multiple data inventories. Software architectures must be optimised to overcome issues relating to intellectual property, cross platform access, standardisation, fidelity, potential duplication, and mass-storage. This need for “cross sectioning,” however, “merely adds to the muddle” (Lefebvre 8). This is a predicament that only intensifies as space and objects in space become increasingly “representable” (Galloway), and as the impetus for the project of spatial politics for the vision impaired moves beyond representation to centre on access and meaning-making.ConclusionSupermarkets act as sites of hegemony, resistance, difference, and transformation, where the vision impaired and their allies resist the “repressive socialization of impaired bodies” through their own social movements relating to environmental accessibility and the technology assisted spatial practice of shopping (Gleeson 129). It is undeniable that the prototype technologies described in this paper, and those like it, indeed do have a great deal of emancipatory potential. However, it should be understood that these devices produce representations of supermarket-space as a simulation within a framework that attempts to mimic the real, and these representations are pre-determined by the industrial, technological, and regulatory forces that govern their production (Lefebvre 8). Thus, the potential of assistive technologies is dependent upon a range of constraints relating to data accessibility, and the interaction of various kinds of lists across the geographic area that surrounds the supermarket, locomotor, haptic, and search spaces of the supermarket, the home-space, and the internal spaces of a shopper’s imaginary. These interactions are important in contributing to the reproduction of disability in supermarkets through the use of assistive shopping technologies. The ways by which people make and read shopping lists complicate the relations between supermarket-space as location data and product inventories versus that which is intuited and experienced by a shopper (Sutherland). Not only should we be creating inventories of supermarket locomotor, haptic, and search spaces, the attention of developers working in this area of assistive technologies should look beyond the challenges of spatial representation and move towards a focus on issues of interoperability and expanded access of spatial inventory databases and data within and beyond supermarket-space.ReferencesDe Certeau, Michel. The Practice of Everyday Life. Berkeley: University of California Press, 1984. Print.De Souza e Silva, A. “From Cyber to Hybrid: Mobile Technologies As Interfaces of Hybrid Spaces.” Space and Culture 9.3 (2006): 261-78.Ellis, Katie, and Mike Kent. Disability and New Media. New York: Routledge, 2011.Farman, Jason. Mobile Interface Theory: Embodied Space and Locative Media. New York: Routledge, 2012.Galloway, Alexander. “Are Some Things Unrepresentable?” Theory, Culture and Society 28 (2011): 85-102.Gleeson, Brendan. Geographies of Disability. London: Routledge, 1999.Goggin, Gerard. Cell Phone Culture: Mobile Technology in Everyday Life. London: Routledge, 2006.Haber, Alex. “Mapping the Void in Perec’s Species of Spaces.” Tattered Fragments of the Map. Ed. Adam Katz and Brian Rosa. S.l.: Thelimitsoffun.org, 2009.Jolley, William M. When the Tide Comes in: Towards Accessible Telecommunications for People with Disabilities in Australia. Sydney: Human Rights and Equal Opportunity Commission, 2003.Keaggy, Bill. Milk Eggs Vodka: Grocery Lists Lost and Found. Cincinnati, Ohio: HOW Books, 2007.Kellerman, Aharon. Personal Mobilities. London: Routledge, 2006.Kleege, Georgia. “Blindness and Visual Culture: An Eyewitness Account.” The Disability Studies Reader. 2nd edition. Ed. Lennard J. Davis. New York: Routledge, 2006. 391-98.Lefebvre, Henri. The Production of Space. Oxford, UK: Blackwell, 1991.López-de-Ipiña, Diego, Tania Lorido, and Unai López. “Indoor Navigation and Product Recognition for Blind People Assisted Shopping.” Ambient Assisted Living. Ed. J. Bravo, R. Hervás, and V. Villarreal. Berlin: Springer-Verlag, 2011. 25-32. May, Michael, and Charles LaPierre. “Accessible Global Position System (GPS) and Related Orientation Technologies.” Assistive Technology for Visually Impaired and Blind People. Ed. Marion A. Hersh, and Michael A. Johnson. London: Springer-Verlag, 2008. 261-88. Nicholson, John, Vladimir Kulyukin, and Daniel Coster. “Shoptalk: Independent Blind Shopping Through Verbal Route Directions and Barcode Scans.” The Open Rehabilitation Journal 2.1 (2009): 11-23.Perec, Georges. Species of Spaces and Other Pieces. Trans. and Ed. John Sturrock. London: Penguin Books, 1997.Schillmeier, Michael W. J. Rethinking Disability: Bodies, Senses, and Things. New York: Routledge, 2010.Sutherland, I. “Mobile Media and the Socio-Technical Protocols of the Supermarket.” Australian Journal of Communication. 36.1 (2009): 73-84.

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IntroductionIn a 2013 press release issued by Blind Citizens Australia, the advocacy group announced they were lodging a human rights complaint against the Australian government and the ABC over the lack of audio description available on the public broadcaster. Audio description is a track of narration included between the lines of dialogue which describes important visual elements of a television show, movie or performance. Audio description is broadly recognised as an essential feature to make television accessible to audiences who are blind or vision impaired (Utray et al.). Indeed, Blind Citizens Australia maintained that audio description was as important as captioning on Australian television:people who are blind have waited too long and are frustrated that audio description on television remains indefinitely beyond our reach. Our Deaf or hearing impaired peers have always seen great commitment from the ABC, but we continue to feel like second class citizens.While audio description as a technology was developed in the 1960s—around the same time as captions (Ellis, “Netflix Closed Captions”)—it is not as widely available on television and access is therefore often considered to be out of reach for this group. As a further comparison, in Australia, while the provision of captions was mandated in the Broadcasting Services Act (BSA) 1992 and television sets had clear Australian standards regarding their capability to display captions, there is no legislation for audio description and no consistency regarding the ability of television sets sold in Australia to display them (Ellis, “Television’s Transition”). While as a technology, audio description is as old as captioning it is not as widely available on television. This is despite the promise of technological advancements to facilitate its availability. For example, Cronin and King predicted that technological change such as the introduction of stereo sound on television would facilitate a more widespread availability of audio description; however, this has not eventuated. Similarly, in the lead up to the transition from analogue to digital broadcasting in Australia, government policy documents predicted a more widespread availability of audio description as a result of increased bandwidth available via digital television (Ellis, “Television’s Transition”). While these predictions paved way for an audio description trial, there has been no amendment to the BSA to mandate its provision.Audio description has been experienced on Australian broadcast television in 2012, but only for a 14-week trial on ABC1. The trial report, and feedback from disability groups, identified several technical impediments and limitations which effected the experience of audio described content during this trial, including: the timing of the trial during a period in which the transition from analogue to digital television was still occurring (creating hardware compatibility issues for some consumers); the limitations of the “ad hoc” approach undertaken by the ABC and manual implementation of audio description; and the need for upgraded digital receivers (ABC “Trial of Audio Description”, 2). While advocacy groups acknowledged the technical complexities involved, the expected stakeholder discussions that were due to be held post-trial, in part to attempt to resolve the issues experienced, were never undertaken. As a result of the lack of subsequent commitments to providing audio description, in 2013 advocacy group Blind Citizens Australia lodged their formal complaints of disability discrimination against the ABC and the Federal Government. Since the 2012 trial on ABC1, the ABC’s catch-up portal iView instigated another audio description trial in 2015. Through the iView trial it was further confirmed that audio description held considerable benefits for people with a vision impairment. They also demonstrated that audio description was technically feasible, with far less ‘technical difficulties’ than the experience of the 2012 broadcast-based trial. Over the 15 month trial on ABC iView 1,305 hours of audio described content was provided and played 158, 277 times across multiple platforms, including iOS, Android, the Freeview app and desktop computers (ABC, “ABC iView Audio Description Trial”).Yet despite repeated audio description trials and the lodgement of discrimination complaints, there remains no audio description on Australian broadcast television. Similarly, whereas 55 per cent of DVDs released in Australia have captions, only 25 per cent include an audio description track (Media Access Australia). At the time of writing, the only audio description available on Australian television is on Netflix Australia, a subscription video on demand provider.This article seeks to highlight the importance of television access for people with disability, with a specific focus on the provision of audio description for people with vision impairments. Research consistently shows that despite being a visual medium, people with vision impairments watch television at least once a day (Cronin and King; Ellis, “Netflix Closed Captions”). However, while television access has been a priority for advocates for people who are Deaf and hard of hearing (Downey), audiences advocating audio description are only recently making gains (Ellis, “Netflix Closed Captions”; Ellis and Kent). These gains are frequently attributed to technological change, particularly the digitisation of television and the introduction of subscription video on demand where users access television content online and are not constrained by broadcast schedules. This transformation of how we access television is also considered in the article, again with a focus on the provision–or lack thereof—of audio description.This article also reports findings of research conducted with Australians with disabilities accessing the emerging video on demand environment in 2016. The survey was run online from January to February 2016. Survey respondents included people with disability, their families, and carers, and were sourced through disability organisations and community groups as well as via disability-focused social media. A total of 145 people completed the survey and 12 people participated in follow-up interviews. Insights were gained into both how people with disability are currently using video on demand and their anticipated usage of services. Of note is that most subscription video on demand services (Netflix Australia, Stan, and Presto) had only been introduced in Australia in the year before the survey being carried out, with only Foxtel Play and Quickflix having been in operation for some time prior to that.Finally, the article ends by looking at past and current advocacy in this area, including a discussion on existing—albeit, to date, limited—political will.Access to Television for People with DisabilitiesTelevision can be disabling in different ways for people with impairments, yet several accessibility features exist to translate information. For example, people who are D/deaf or hard of hearing may require captions, while people with vision impairments prefer to make use of audio description (Alper et al.). Similarly, people with mobility and dexterity impairments found the transition to digital broadcasting difficult, particularly with relation to set top box set up (Carmichael et al.). As Joshua Robare has highlighted, even legislation has generally favoured the inclusion of audiences with hearing impairments, while disregarding those with vision impairments. Similarly, much of the literature in this area focuses on the provision of captions—a vital accessibility feature for people who are D/deaf or hard of hearing. Consequently, research into accessibility to television for a diversity of impairments, going beyond hearing impairments, remains deficient.In a study of Australian audiences with disability conducted between September and November 2013—during the final months of the analogue to digital simulcast period of Australian broadcast television—closed captions, clean audio, and large/colour-coded remote control keys emerged as the most desired access features (see Ellis, “Digital Television Flexibility”). Audio description barely registered in the top five. In a different study conducted two years ago/later, when disabled Australian audiences of video on demand were asked the same question, captions continued to dominate at 63.4 per cent; however, audio description was also seen to be a necessary feature for almost one third of respondents (see Ellis et al., Accessing Subcription Video).Robert Kingett, founder of the Accessible Netflix Project, participated in our research and told us in an interview that video on demand providers treat accessibility as an “afterthought”, particularly for blind people whom most don’t think of as watching television. Yet research dating back to the 1990s shows almost 100 per cent of people with vision impairments watch television at least once a day (Cronin & King). Statistically, the number of Australians who identify as blind or vision impaired is not insignificant. Vision Australia estimates that over 357,000 Australians have a vision impairment, while one in five Australians have a disability of some form. With an ageing population, this number is expected to grow exponentially in the next ten years (Australian Network on Disability). Kingett therefore describes this lack of accessibility as evidence video on demand is “stuck in the dark ages”, and advocates that people with vision impairments do use video on demand and therefore continue to have unmet access needs.Video on Demand—Transforming TelevisionSubscription video on demand services have caused a major shift in the way television is used and consumed in Australia. Prior to 2015, there was a small subscription video on demand industry in this country. However, in 2015, following the launch of Netflix Australia, Stan, and Presto, Australia was described as having entered the “streaming wars” (Tucker) where consumers would benefit from the increased competition. As Netflix gained dominance in the video on demand market internationally, people with disability began to recognise the potential this service could have in transforming their access to television.For example, the growing availability of video on demand services continues to provide disruptive change to the way in which consumers enjoy information and entertainment. While traditional broadcast television has provided great opportunities for participation in news, events, and popular culture, both socially and in the workplace, the move towards video on demand services has seen a notable decline in traditional television viewing habits, with online continuing to increase at the expense of Australian free-to-air programming (C-Scott).For the general population, this always-on, always-available, and always-shareable nature of video on demand means that the experience is both convenient and instant. If a television show is of interest to friends and family, it can be quickly shared through popular social media with others, allowing everyone to join in the experience. For people with disability, the ability to both share and personalise the experience of television is critical to the popularity of video on demand services for this group. This gives them not only the same benefits as others but also ensures that people with disability are not unintentionally excluded from participation—it allows people with disability the choice as to whether or not to join in. However, exclusion from video on demand is a significant concern for people with disability due to the lack of accessibility features in popular subscription services. The lack of captions, audio description, and interfaces that do not comply with international Web accessibility standards are resulting in many people with disability being unable to fully participate in the preferred viewing platforms of family and friends.The impact of this expands beyond the consumption patterns of audiences, shifting the way the audience is defined and conceptualised. With an increasing distribution of audience attention to multiple channels, products, and services, the ability to, and strategies for, acquiring a large audience has changed (Napoli). As audience attention is distributed, it is broken up, into smaller, fragmented groups. The success, therefore, of a new provider may be to amass a large audience through the aggregation of smaller, niche audiences. This theory has significance for consumers who require audio description because they represent a viable target group. In this context, accessibility is reframed as a commercial opportunity rather than a cost (Ellis, “Netflix Closed Captions”).However, what this means for future provision of audio description in Australia is still unclear. Chris Mikul from Media Access Australia, author of Access on Demand, was interviewed as part of this research. He told us that the complete lack of audio description on local video on demand services can be attributed to the lack of Australian legislation requiring it. In an interview as part of this research he explained the central issue with audio description in this country as “the lack of audio description on broadcast TV, which is shocking in a world context”.International providers fare only slightly better. Robert Kingett established the Accessible Netflix Project in 2013 with the stated aim of advocating for the provision of audio description on Netflix. Netflix, despite a lack of a clear accessibility policy, are seen as being in front in terms of overall accessibility—captions are available for most content. However, the provision of audio description was initially not considered to be of such importance, and Netflix were initially against the idea, citing technical difficulties. Nevertheless, in 2015—shortly after their Australian launch—they did eventually introduce audio description on original programming, describing the access feature as an option customers could choose, “just like choosing the soundtrack in a different language” (Wright). However, despite such successful trials, the issue in the Australian market remains the absence of legislation mandating the provision of audio description in Australia and the other video on demand providers have not introduced audio description to compete with Netflix. As the Netflix example illustrates, both legislation and recognition of people with disability as a key audience demographic will result in a more accessible television environment for this group.Currently, it is debatable as to whether this increasingly competitive market, the shifting perception of audience attraction and retention, and the entry of multiple international video on demand providers, has influenced how accessibility is viewed, both for broadcast television and video on demand. Although there is some evidence for an increasing consideration of people with disability as “valid” consumers—take, for example, the iView audio description trial, or the inclusion of audio description by Netflix—our research indicates accessibility is still inconsistently considered, designed for, and applied by current providers.Survey Response: Key Issues Regarding AccessibilityRespondents were asked to provide an overall impression of video on demand services, and to tell us about their positive and negative experiences. Analysis of 68 extended responses, and the responses provided by the interview participants, identified a lack of availability of accessibility features such as audio description as a key problem. What our results indicate is that while customers with a disability are largely accommodating of the inaccessibility of providers—they use their own assistive technology to access content—they are keenly aware of the provisions that could be made. As one respondent put it:they could do a lot better: talking menus, spoken sub titles, and also spoken messages on screen.However, many expressed low expectations due to the continued absence of audio description on broadcast television:so, the other thing is, my expectations are quite low because of years of not having audio descriptions. I have slightly different expectations to other people.This reflection is important in considering both the shifting expectations regarding video on demand providers but also the need for a clear communication of what features are available so that providers can cater to—and therefore capture—niche markets.The survey identified captioning as the main accessibility problem of video on demand services. However, this may not accurately reflect the need for other accessibility features such as audio description. Rather, it may be indicative that this feature is often the only choice given to consumers. As, Chris Mikul identified, “the only disability being catered for to any great extent is deafness/hearing impairment”. Kingett agreed, noting:people who are deaf and hard of hearing are placed way before the rest because captions are beyond easy and cheap to create now. Please, there’s even companies that people use to crowd source captions so companies don’t have to do it anymore. This all came about because the deaf community has [banded] together … to achieve a cause. I know audio description isn’t as cheap to make as captions but, by these companies’ budgets that’s like dropping a penny.Advocacy and Political WillAs noted above, it has been argued by some that accessibility features that address vision impairments have been neglected. The reason behind this is twofold—the perception that this disability is experienced by a minority of the population and that, because blind people “don’t watch television”, it is not an important accessibility feature. This points towards a need for both disability advocacy and political will by politicians to introduce legislation. As one survey respondent identified, the reality is that, in Australia, neither politicians nor people with vision impairments have yet to address the issue on audio description in an organised or sustained way:we have very little audio described content available in Australia. We don’t have the population of blind people nor the political will by politicians to force providers to provide for us.However, Blind Citizens Australia—the coalition of television audiences with vision impairments who lodged the human rights complaint against the government and the ABC—suggest the tide is turning. Whereas advocates for people with vision impairments have traditionally focused on access to the workforce, the issue of television accessibility is increasingly gaining attention, particularly as a result of international activist efforts and the move towards video on demand (see Ellis and Kent).For example, Kingett’s Accessible Netflix Project in the US is considered one of the most successful accessibility movements towards the introduction of audio description. While its members are predominantly US-based, it does include several Australian members and continues to cover Netflix Australia’s stance on audio description, and be covered by Australian media and organisations (including Media Access Australia and Life Hacker). When Netflix launched in Australia, Kingett encouraged Australians to become more involved in the project (Ellis and Kent).However, despite the progress towards mandating of audio description in parliament and the resolution of efforts made by advocacy groups (including Vision Australia and Blind Citizens Australia), the status of audio description remains uncertain. Whilst some support has been gained—specifically through motions made by Senator Siewert and the ABC iView audio description trials—significant change has been slow. For example, conciliation discussions are still ongoing regarding the now four-year-old complaint brought against the ABC and the Federal Government by Blind Citizens Australia. Meanwhile, although the Senate supported Senator Siewert’s motion to change the Broadcasting Services Act to include audio description, the Act has yet to be amended.The results of multiple ABC trials of audio description remain in discussion. Whilst the recently released report on the findings of the April 2015—July 2016 iView trial states that the “trial has identified that those who utilised the audio description service found it a valuable enhancement to their media engagement and their social interactions” (ABC, “ABC iView Audio Description Trial” 18), it also cautioned that “any move to introduce AD services in Australia would have budgetary implications for the broadcasters in a constrained financial environment” and “broader legislative implications” (ABC, “ABC iView Audio Description Trial” 18). Indeed, although the trial was considered “successful”—in that experiences by users were generally positive and the benefits considerable (Media Access Australia, “New Report”)—the continuation of audio description on iView alone was clarified as representing “a systemic failure to provide people who are blind or have low vision with basic access to television now, given that iView is out of reach for many people in the blindness and low vision community” (Media Access Australia, “New Report”). Indeed, the relatively low numbers of plays of audio described content during the trial (158, 277 plays, representing 0.58% of total program plays on iView) were likely a result of a lack of access to smartphones or Internet technology, prohibitive data speeds and/or general Internet costs, all factors which affect the accessibility of video on demand significantly more for people with disability (Ellis et al., “Access for Everyone?”).On a more positive note, the culmination of advocacy pressure, the ABC iView trial, political attention, and increasing academic literature on the accessibility of Australian media has resulted in the establishment of an Audio Description Working Group by the government. This group consists of industry representatives, advocacy group representatives, academics, and “consumer representatives”. The aims of the group are to: identify options to sustainably increase access to audio description services; identify any impediments to the implementation of audio description; provide expert advice on audio description implementation options; and develop a report on the findings due at the end of 2017.ConclusionIn the absence of audio description, people who are blind or vision impaired report a less satisfying television experience (Cronin and King; Kingett). However, with each technological advancement in the delivery of television, from stereo sound to digital television, this group has held hopes for a more accessible experience. The reality, however, has been a continued lack of audio description, particularly in broadcast television.Several commentators have compared the provision of audio description with closed captioning. They find that audio description is not as widely available, and reflect this is likely a result of lack of legislation (Robare; Ellis, “Digital Television Flexibility”)—for example, in the Australian context, whereas the provision of captions is mandated in the Broadcasting Services Act 1992, audio description is not. As a result, there have been limited trials of audio description in this country and inconsistent standards in how to display it. As discussed throughout this paper, people with vision impairments and their allies therefore often draw on the example of the widespread “acceptance” of captions to make the case that audio description should also be more widely available.However, following the introduction of subscription video on demand in Australia, and particularly Netflix, the issue of audio description is receiving greater attention. It has been argued that video on demand has transformed television, particularly the ways in which television is accessed. Video on demand could also potentially transform the way we think about accessibility for audiences with disability. While captions are a well-established accessibility feature facilitating television access for people with a range of disabilities, video on demand is raising the profile of the importance of audio description for audiences with vision impairments.ReferencesABC. “Audio Description Trial on ABC Television: Report to the Minister for Broadband, Communications and the Digital Economy”. Dec. 2012. 8 Apr. 2017 <https://www.communications.gov.au/sites/g/files/net301/f/ABC-Audio-Description-Trial-Report2.pdf>.ABC. “ABC iView Audio Description Trial: Final Report to The Department of Communications and the Arts.” Oct. 2016. 6 Apr. 2017 <https://www.communications.gov.au/documents/final-report-trial-audio-description-abc-iview>.Alper, Meryl, et al. “Reimagining the Good Life with Disability: Communication, New Technology, and Humane Connections.” Communication and the Good Life. Ed. H. Wang. New York: Peter Lang, 2015.Australian Network on Disability. “Disability Statistics.” Mar. 2017. 30 Apr. 2017 <https://www.and.org.au/pages/disability-statistics.html>.Blind Citizens Australia. Government and ABC Fail to Deliver on Accessible TV for Australia’s Blind. Submission. 10 July 2013. 1 May 2017 <http://bca.org.au/submissions/>.C-Scott, Marc. “The Battle for Audiences as Free-TV Viewing Continues Its Decline.” Mumbrella 22 Apr. 2016. 24 May 2016 <https://mumbrella.com.au/the-battle-for-audiences-as-free-tv-viewing-continues-its-decline-362010>.Carmichael, Alex, et al. “Digital Switchover or Digital Divide: A Prognosis for Useable and Accessible Interactive Digital Television in the UK.” Universal Access in the Information Society 4 (2006): 400–16.Cronin, Barry J., and Sharon Robertson King. “The Development of the Descriptive Video Services.” National Center to Improve Practice in Special Education through Technology, Media and Materials. Sep. 1998. 8 May 2014 <https://www2.edc.org/NCIP/library/v&c/Cronin.htm>.Downey, G. “Constructing Closed-Captioning in the Public Interest: From Minority Media Accessibility to Mainstream Educational Technology.” Info 9.2–3 (2007): 69–82.Ellis, Katie. “Digital Television Flexibility: A Survey of Australians with Disability.” Media International Australia 150 (2014): 96.———. “Netflix Closed Captions Offer an Accessible Model for the Streaming Video Industry, But What about Audio Description?” Communication, Politics & Culture 47.3 (2015).———. “Television’s Transition to the Internet: Disability Accessibility and Broadband-Based TV in Australia.” Media International Australia 153 (2014): 53–63.Ellis, Katie, and Mike Kent. “Accessible Television: The New Frontier in Disability Media Studies Brings Together Industry Innovation, Government Legislation and Online Activism.” First Monday 20 (2015). <http://firstmonday.org/ojs/index.php/fm/article/view/6170>.Ellis, Katie, et al. Accessing Subscription Video on Demand: A Study of Disability and Streaming Television in Australia. Australian Communications Consumer Action Network. Aug. 2016. <https://accan.org.au/grants/current-grants/1066-accessing-video-on-demand-a-study-of-disability-and-streaming-television>.Ellis, Katie, et al. “Access for Everyone? Australia’s ‘Streaming Wars’ and Consumers with Disabilities.” Continuum (2017, publication pending).Kingett, Robert. “The Accessible Netflix Project Advocates Taking Steps to Ensure Netflix Accessibility for Everyone.” 2014. 30 Jan. 2014 <https://netflixproject.wordpress.com>.Media Access Australia. “Statistics on DVD Accessibility in Australia.” 2012. 21 Nov. 2014 <https://mediaaccess.org.au/dvds/Statistics%20on%20DVD%20accessibility%20in%20Australia>.———. “New Report on the Trial of A.D. on ABC iView.” 7 Mar. 2017. 30 Apr. 2017 <https://mediaaccess.org.au/latest_news/television/new-report-on-the-trial-of-ad-on-abc-iview>.Napoli, Philip M., ed. Audience Evolution: New Technologies and the Transformation of Media Audiences. New York: Columbia UP, 2011.Robare, Joshua S. “Television for All: Increasing Television Accessibility for the Visually Impaired through the FCC’s Ability to Regulate Video Description Technology.” Federal Communications Law Journal 63.2 (2011): 553–78.Tucker, Harry. “Netflix Leads the Streaming Wars, Followed by Foxtel’s Presto.” News.com.au 24 June 2016. 18 May 2016 <http://www.news.com.au/technology/home-entertainment/tv/netflix-leads-the-streaming-wars-followed-by-foxtels-presto/news-story/7adf45dcd7d9486ff47ec5ea5951287f>.Utray, Francisco, et al. “Monitoring Accessibility Services in Digital Television.” International Journal of Digital Multimedia Broadcasting (2012): 9.

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Writing in the American Annals of the Deaf in 1931, Emil S. Ladner Jr, a Deaf high school student, predicted the invention of words on screen to facilitate access to “talkies”. He anticipated:Perhaps, in time, an invention will be perfected that will enable the deaf to hear the “talkies”, or an invention which will throw the words spoken directly under the screen as well as being spoken at the same time. (Ladner, cited in Downey Closed Captioning)This invention would eventually come to pass and be known as captions. Captions as we know them today have become widely available because of a complex interaction between technological change, volunteer effort, legislative activism, as well as increasing consumer demand. This began in the late 1950s when the technology to develop captions began to emerge. Almost immediately, volunteers began captioning and distributing both film and television in the US via schools for the deaf (Downey, Constructing Closed-Captioning in the Public Interest). Then, between the 1970s and 1990s Deaf activists and their allies began to campaign aggressively for the mandated provision of captions on television, leading eventually to the passing of the Television Decoder Circuitry Act in the US in 1990 (Ellis). This act decreed that any television with a screen greater than 13 inches must be designed/manufactured to be capable of displaying captions. The Act was replicated internationally, with countries such as Australia adopting the same requirements with their Australian standards regarding television sets imported into the country. As other papers in this issue demonstrate, this market ultimately led to the introduction of broadcasting requirements.Captions are also vital to the accessibility of videos in today’s online and streaming environment—captioning is listed as the highest priority in the definitive World Wide Web Consortium (W3C) Web Content Accessibility Guideline’s (WCAG) 2.0 standard (W3C, “Web Content Accessibility Guidelines 2.0”). This recognition of the requirement for captions online is further reflected in legislation, from both the US 21st Century Communications and Video Accessibility Act (CVAA) (2010) and from the Australian Human Rights Commission (2014).Television today is therefore much more freely available to a range of different groups. In addition to broadcast channels, captions are also increasingly available through streaming platforms such as Netflix and other subscription video on demand providers, as well as through user-generated video sites like YouTube. However, a clear discrepancy exists between guidelines, legislation and the industry’s approach. Guidelines such as the W3C are often resisted by industry until compliance is legislated.Historically, captions have been both unavailable (Ellcessor; Ellis) and inadequate (Ellis and Kent), and in many instances, they still are. For example, while the provision of captions in online video is viewed as a priority across international and domestic policies and frameworks, there is a stark contrast between the policy requirements and the practical implementation of these captions. This has led to the active development of a solution as part of an ongoing tradition of user-led development; user-generated captions. However, within disability studies, research around the agency of this activity—and the media savvy users facilitating it—has gone significantly underexplored.Agency of ActivityInformation sharing has featured heavily throughout visions of the Web—from Vannevar Bush’s 1945 notion of the memex (Bush), to the hacker ethic, to Zuckerberg’s motivations for creating Facebook in his dorm room in 2004 (Vogelstein)—resulting in a wide agency of activity on the Web. Running through this development of first the Internet and then the Web as a place for a variety of agents to share information has been the hackers’ ethic that sharing information is a powerful, positive good (Raymond 234), that information should be free (Levey), and that to achieve these goals will often involve working around intended information access protocols, sometimes illegally and normally anonymously. From the hacker culture comes the digerati, the elite of the digital world, web users who stand out by their contributions, success, or status in the development of digital technology. In the context of access to information for people with disabilities, we describe those who find these workarounds—providing access to information through mainstream online platforms that are not immediately apparent—as the disability digerati.An acknowledged mainstream member of the digerati, Tim Berners-Lee, inventor of the World Wide Web, articulated a vision for the Web and its role in information sharing as inclusive of everyone:Worldwide, there are more than 750 million people with disabilities. As we move towards a highly connected world, it is critical that the Web be useable by anyone, regardless of individual capabilities and disabilities … The W3C [World Wide Web Consortium] is committed to removing accessibility barriers for all people with disabilities—including the deaf, blind, physically challenged, and cognitively or visually impaired. We plan to work aggressively with government, industry, and community leaders to establish and attain Web accessibility goals. (Berners-Lee)Berners-Lee’s utopian vision of a connected world where people freely shared information online has subsequently been embraced by many key individuals and groups. His emphasis on people with disabilities, however, is somewhat unique. While maintaining a focus on accessibility, in 2006 he shifted focus to who could actually contribute to this idea of accessibility when he suggested the idea of “community captioning” to video bloggers struggling with the notion of including captions on their videos:The video blogger posts his blog—and the web community provides the captions that help others. (Berners-Lee, cited in Outlaw)Here, Berners-Lee was addressing community captioning in the context of video blogging and user-generated content. However, the concept is equally significant for professionally created videos, and media savvy users can now also offer instructions to audiences about how to access captions and subtitles. This shift—from user-generated to user access—must be situated historically in the context of an evolving Web 2.0 and changing accessibility legislation and policy.In the initial accessibility requirements of the Web, there was little mention of captioning at all, primarily due to video being difficult to stream over a dial-up connection. This was reflected in the initial WCAG 1.0 standard (W3C, “Web Content Accessibility Guidelines 1.0”) in which there was no requirement for videos to be captioned. WCAG 2.0 went some way in addressing this, making captioning online video an essential Level A priority (W3C, “Web Content Accessibility Guidelines 2.0”). However, there were few tools that could actually be used to create captions, and little interest from emerging online video providers in making this a priority.As a result, the possibility of user-generated captions for video content began to be explored by both developers and users. One initial captioning tool that gained popularity was MAGpie, produced by the WGBH National Center for Accessible Media (NCAM) (WGBH). While cumbersome by today’s standards, the arrival of MAGpie 2.0 in 2002 provided an affordable and professional captioning tool that allowed people to create captions for their own videos. However, at that point there was little opportunity to caption videos online, so the focus was more on captioning personal video collections offline. This changed with the launch of YouTube in 2005 and its later purchase by Google (CNET), leading to an explosion of user-generated video content online. However, while the introduction of YouTube closed captioned video support in 2006 ensured that captioned video content could be created (YouTube), the ability for users to create captions, save the output into one of the appropriate captioning file formats, upload the captions, and synchronise the captions to the video remained a difficult task.Improvements to the production and availability of user-generated captions arrived firstly through the launch of YouTube’s automated captions feature in 2009 (Google). This service meant that videos could be uploaded to YouTube and, if the user requested it, Google would caption the video within approximately 24 hours using its speech recognition software. While the introduction of this service was highly beneficial in terms of making captioning videos easier and ensuring that the timing of captions was accurate, the quality of captions ranged significantly. In essence, if the captions were not reviewed and errors not addressed, the automated captions were sometimes inaccurate to the point of hilarity (New Media Rock Stars). These inaccurate YouTube captions are colloquially described as craptions. A #nomorecraptions campaign was launched to address inaccurate YouTube captioning and call on YouTube to make improvements.The ability to create professional user-generated captions across a variety of platforms, including YouTube, arrived in 2010 with the launch of Amara Universal Subtitles (Amara). The Amara subtitle portal provides users with the opportunity to caption online videos, even if they are hosted by another service such as YouTube. The captioned file can be saved after its creation and then uploaded to the relevant video source if the user has access to the location of the video content. The arrival of Amara continues to provide ongoing benefits—it contains a professional captioning editing suite specifically catering for online video, the tool is free, and it can caption videos located on other websites. Furthermore, Amara offers the additional benefit of being able to address the issues of YouTube automated captions—users can benefit from the machine-generated captions of YouTube in relation to its timing, then download the captions for editing in Amara to fix the issues, then return the captions to the original video, saving a significant amount of time when captioning large amounts of video content. In recent years Google have also endeavoured to simplify the captioning process for YouTube users by including its own captioning editors, but these tools are generally considered inferior to Amara (Media Access Australia).Similarly, several crowdsourced caption services such as Viki (https://www.viki.com/community) have emerged to facilitate the provision of captions. However, most of these crowdsourcing captioning services can’t tap into commercial products instead offering a service for people that have a video they’ve created, or one that already exists on YouTube. While Viki was highlighted as a useful platform in protests regarding Netflix’s lack of captions in 2009, commercial entertainment providers still have a responsibility to make improvements to their captioning. As we discuss in the next section, people have resorted extreme measures to hack Netflix to access the captions they need. While the ability for people to publish captions on user-generated content has improved significantly, there is still a notable lack of captions for professionally developed videos, movies, and television shows available online.User-Generated Netflix CaptionsIn recent years there has been a worldwide explosion of subscription video on demand service providers. Netflix epitomises the trend. As such, for people with disabilities, there has been significant focus on the availability of captions on these services (see Ellcessor, Ellis and Kent). Netflix, as the current leading provider of subscription video entertainment in both the US and with a large market shares in other countries, has been at the centre of these discussions. While Netflix offers a comprehensive range of captioned video on its service today, there are still videos that do not have captions, particularly in non-English regions. As a result, users have endeavoured to produce user-generated captions for personal use and to find workarounds to access these through the Netflix system. This has been achieved with some success.There are a number of ways in which captions or subtitles can be added to Netflix video content to improve its accessibility for individual users. An early guide in a 2011 blog post (Emil’s Celebrations) identified that when using the Netflix player using the Silverlight plug-in, it is possible to access a hidden menu which allows a subtitle file in the DFXP format to be uploaded to Netflix for playback. However, this does not appear to provide this file to all Netflix users, and is generally referred to as a “soft upload” just for the individual user. Another method to do this, generally credited as the “easiest” way, is to find a SRT file that already exists for the video title, edit the timing to line up with Netflix, use a third-party tool to convert it to the DFXP format, and then upload it using the hidden menu that requires a specific keyboard command to access. While this may be considered uncomplicated for some, there is still a certain amount of technical knowledge required to complete this action, and it is likely to be too complex for many users.However, constant developments in technology are assisting with making access to captions an easier process. Recently, Cosmin Vasile highlighted that the ability to add captions and subtitle tracks can still be uploaded providing that the older Silverlight plug-in is used for playback instead of the new HTML5 player. Others add that it is technically possible to access the hidden feature in an HTML5 player, but an additional Super Netflix browser plug-in is required (Sommergirl). Further, while the procedure for uploading the file remains similar to the approach discussed earlier, there are some additional tools available online such as Subflicks which can provide a simple online conversion of the more common SRT file format to the DFXP format (Subflicks). However, while the ability to use a personal caption or subtitle file remains, the most common way to watch Netflix videos with alternative caption or subtitle files is through the use of the Smartflix service (Smartflix). Unlike other ad-hoc solutions, this service provides a simplified mechanism to bring alternative caption files to Netflix. The Smartflix website states that the service “automatically downloads and displays subtitles in your language for all titles using the largest online subtitles database.”This automatic download and sharing of captions online—known as fansubbing—facilitates easy access for all. For example, blog posts suggest that technology such as this creates important access opportunities for people who are deaf and hard of hearing. Nevertheless, they can be met with suspicion by copyright holders. For example, a recent case in the Netherlands ruled fansubbers were engaging in illegal activities and were encouraging people to download pirated videos. While the fansubbers, like the hackers discussed earlier, argued they were acting in the greater good, the Dutch antipiracy association (BREIN) maintained that subtitles are mainly used by people downloading pirated media and sought to outlaw the manufacture and distribution of third party captions (Anthony). The fansubbers took the issue to court in order to seek clarity about whether copyright holders can reserve exclusive rights to create and distribute subtitles. However, in a ruling against the fansubbers, the court agreed with BREIN that fansubbing violated copyright and incited piracy. What impact this ruling will have on the practice of user-generated captioning online, particularly around popular sites such as Netflix, is hard to predict; however, for people with disabilities who were relying on fansubbing to access content, it is of significant concern that the contention that the main users of user-generated subtitles (or captions) are engaging in illegal activities was so readily accepted.ConclusionThis article has focused on user-generated captions and the types of platforms available to create these. It has shown that this desire to provide access, to set the information free, has resulted in the disability digerati finding workarounds to allow users to upload their own captions and make content accessible. Indeed, the Internet and then the Web as a place for information sharing is evident throughout this history of user-generated captioning online, from Berner-Lee’s conception of community captioning, to Emil and Vasile’s instructions to a Netflix community of captioners, to finally a group of fansubbers who took BRIEN to court and lost. Therefore, while we have conceived of the disability digerati as a conflation of the hacker and the acknowledged digital influencer, these two positions may again part ways, and the disability digerati may—like the hackers before them—be driven underground.Captioned entertainment content offers a powerful, even vital, mode of inclusion for people who are deaf or hard of hearing. Yet, despite Berners-Lee’s urging that everything online be made accessible to people with all sorts of disabilities, captions were not addressed in the first iteration of the WCAG, perhaps reflecting the limitations of the speed of the medium itself. This continues to be the case today—although it is no longer difficult to stream video online, and Netflix have reached global dominance, audiences who require captions still find themselves fighting for access. Thus, in this sense, user-generated captions remain an important—yet seemingly technologically and legislatively complicated—avenue for inclusion.ReferencesAnthony, Sebastian. “Fan-Made Subtitles for TV Shows and Movies Are Illegal, Court Rules.” Arstechnica UK (2017). 21 May 2017 <https://arstechnica.com/tech-policy/2017/04/fan-made-subtitles-for-tv-shows-and-movies-are-illegal/>.Amara. “Amara Makes Video Globally Accessible.” Amara (2010). 25 Apr. 2017. <https://amara.org/en/ 2010>.Berners-Lee, Tim. “World Wide Web Consortium (W3C) Launches International Web Accessibility Initiative.” Web Accessibility Initiative (WAI) (1997). 19 June 2010. <http://www.w3.org/Press/WAI-Launch.html>.Bush, Vannevar. “As We May Think.” The Atlantic (1945). 26 June 2010 <http://www.theatlantic.com/magazine/print/1969/12/as-we-may-think/3881/>.CNET. “YouTube Turns 10: The Video Site That Went Viral.” CNET (2015). 24 Apr. 2017 <https://www.cnet.com/news/youtube-turns-10-the-video-site-that-went-viral/>.Downey, Greg. 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Baltimore: John Hopkins UP, 2008.———. “Constructing Closed-Captioning in the Public Interest: From Minority Media Accessibility to Mainstream Educational Technology.” Info: The Journal of Policy, Regulation and Strategy for Telecommunications, Information and Media 9.2/3 (2007): 69–82.Ellcessor, Elizabeth. “Captions On, Off on TV, Online: Accessibility and Search Engine Optimization in Online Closed Captioning.” Television & New Media 13.4 (2012): 329-352. <http://tvn.sagepub.com/content/early/2011/10/24/1527476411425251.abstract?patientinform-links=yes&legid=sptvns;51v1>.Ellis, Katie. “Television’s Transition to the Internet: Disability Accessibility and Broadband-Based TV in Australia.” Media International Australia 153 (2014): 53–63.Ellis, Katie, and Mike Kent. “Accessible Television: The New Frontier in Disability Media Studies Brings Together Industry Innovation, Government Legislation and Online Activism.” First Monday 20 (2015). <http://firstmonday.org/ojs/index.php/fm/article/view/6170>.Emil’s Celebrations. “How to Add Subtitles to Movies Streamed in Netflix.” 16 Oct. 2011. 9 Apr. 2017 <https://emladenov.wordpress.com/2011/10/16/how-to-add-subtitles-to-movies-streamed-in-netflix/>.Google. “Automatic Captions in Youtube.” 2009. 24 Apr. 2017 <https://googleblog.blogspot.com.au/2009/11/automatic-captions-in-youtube.html>.Jaeger, Paul. “Disability and the Internet: Confronting a Digital Divide.” Disability in Society. Ed. Ronald Berger. Boulder, London: Lynne Rienner Publishers, 2012.Levey, Steven. Hackers: Heroes of the Computer Revolution. North Sebastopol: O’Teilly Media, 1984.Media Access Australia. “How to Caption a Youtube Video.” 2017. 25 Apr. 2017 <https://mediaaccess.org.au/web/how-to-caption-a-youtube-video>.New Media Rock Stars. “Youtube’s 5 Worst Hilariously Catastrophic Auto Caption Fails.” 2013. 25 Apr. 2017 <http://newmediarockstars.com/2013/05/youtubes-5-worst-hilariously-catastrophic-auto-caption-fails/>.Outlaw. “Berners-Lee Applies Web 2.0 to Improve Accessibility.” Outlaw News (2006). 25 June 2010 <http://www.out-law.com/page-6946>.Raymond, Eric S. The New Hacker’s Dictionary. 3rd ed. Cambridge: MIT P, 1996.Smartflix. “Smartflix: Supercharge Your Netflix.” 2017. 9 Apr. 2017 <https://www.smartflix.io/>.Sommergirl. “[All] Adding Subtitles in a Different Language?” 2016. 9 Apr. 2017 <https://www.reddit.com/r/netflix/comments/32l8ob/all_adding_subtitles_in_a_different_language/>.Subflicks. “Subflicks V2.0.0.” 2017. 9 Apr. 2017 <http://subflicks.com/>.Vasile, Cosmin. “Netflix Has Just Informed Us That Its Movie Streaming Service Is Now Available in Just About Every Country That Matters Financially, Aside from China, of Course.” 2016. 9 Apr. 2017 <http://news.softpedia.com/news/how-to-add-custom-subtitles-to-netflix-498579.shtml>.Vogelstein, Fred. “The Wired Interview: Facebook’s Mark Zuckerberg.” Wired Magazine (2009). 20 Jun. 2010 <http://www.wired.com/epicenter/2009/06/mark-zuckerberg-speaks/>.W3C. “Web Content Accessibility Guidelines 1.0.” W3C Recommendation (1999). 25 Jun. 2010 <http://www.w3.org/TR/WCAG10/>.———. “Web Content Accessibility Guidelines (WCAG) 2.0.” 11 Dec. 2008. 21 Aug. 2013 <http://www.w3.org/TR/WCAG20/>.WGBH. “Magpie 2.0—Free, Do-It-Yourself Access Authoring Tool for Digital Multimedia Released by WGBH.” 2002. 25 Apr. 2017 <http://ncam.wgbh.org/about/news/pr_05072002>.YouTube. “Finally, Caption Video Playback.” 2006. 24 Apr. 2017 <http://googlevideo.blogspot.com.au/2006/09/finally-caption-playback.html>.

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Resilience is an interdisciplinary concept that has been interrogated and investigated in a number of fields of research and practice including psychology, climate change, trauma studies, education and disaster planning. This paper considers its position within critical disability studies, popular understandings of disability and the emergence of a disability culture. Patrick Martin-Breen and J. Marty Anderies offer a colloquial definition of resilience as: Bouncing back after stress, enduring greater stress, and being less disturbed by a given amount of stress. … To be resilient is to withstand a large disturbance without, in the end, changing, disintegrating, or becoming permanently damaged; to return to normal quickly; and to distort less in the face of such stresses. (1182) Conversely, Glenn E. Richardson argues that resiliency is a ‘metatheory’ that can best be described as ‘growth or adaptation through disruption rather than to just recover or bounce back’ (1184). He argues that resiliency theory has progressed through several stages, from the recognition of characteristics of resilient individuals to an appreciation of the support structures required beyond the level of the individual. In her memoir Resilience, Ann Deveson describes resilience as a concept that people think they understand until they are called upon to define it. Deveson offers many definitions and examples of resilience throughout her book, beginning with stories about disability, people with disability and their experiences of changing levels of social inclusion and exclusion (632). She paints an evocative picture of a young mother whose five year old son has cerebral palsy giving evidence before a Royal Commission into Human Relationships during a period of significant social change involving the deinstitutionalisation of people with disabilities: A few years earlier, this child with cerebral palsy would have been placed in an institution. His mother might not even have seen him. Now she had care of her child but the pendulum had swung in the opposite direction. (632) During the 1980s a number of large institutions caring for people with developmental impairments and psychiatric illnesses were closed in favour of community care (Clear 652). Although giving an appearance of endorsing equality of disabled people in the community, the ‘hidden agenda’ of this initiative was to cut public expenditure on social services (Ellis 163). As a result, an undue burden fell to women who became primary carers with little support such as the woman Deveson remembers. She questions where this young mother mustered such ‘magnificent resilience’ when she had such little support: When he was born, she had been discharged from the hospital with her baby, a feeding formula and a tiny pink plate for the child’s cleft palate. The only advice she received was to come back later to have the plate refitted. Her general practitioner prescribed her sedatives for depression, and she and her husband found their own way to the Royal Blind society by asking a blind man they saw outside a supermarket. She had only learned accidentally from one of the nurses that her baby was blind. ‘He’s mentally retarded too,’ the nurse had added, almost as an afterthought. (632) Thus Deveson’s consideration of resilience includes both an individual’s response to what could be described as tragedy and the importance of social support and the drive to demand it. Despite her child’s impairment and the lack of community resources made available to her family to cope, this young woman was leading public discussion about the plight of people with disabilities and their families in the hopes the government would intervene to help improve the situation (Deveson 632). Indeed, when it comes to the experience of disability, resilience is implied and generally understood to mean an attribute of the individual. However, as resilience theory has progressed, resilience can no longer be considered as existing exclusively within the domain of an individual’s personal qualities. Environmental support structures are vital in fostering resilience (Wilkes). Despite resiliency theory moving on from the level of the individual, popular discourses of resiliency as an individual’s attribute continue to dominate disability. As such, some critical disability commentators have redefined resilience as a response to a disabling social world. My aim in this paper is to explore this discourse by engaging with ideas about disability and resilience that emerge in popular culture. Despite the changing social position of people with disabilities in the community, notions of resilience are often invoked to describe the experience of people with disability and attributes of successful (often considered ‘inspiring’) people with disability. I begin by offering a definition of resilience as it is bound up in notions of inspiration and usually applied to people with disabilities. The second part of the paper explores disability as a cultural signifier to comment on the ways in which disability offers cultural meanings that may work to reassure nondisabled people of their privileged position. Finally, the paper considers interpretations of disability as a personal tragedy before exploring the emergence of a disability culture that recognises the social and cultural oppression experienced by people with disabilities and reworks definitions of resilience as a response to that oppression. Defining Resilience: Good Outcomes in Spite of Serious Threats Disability is often invoked in stories about resilience. Gillian King, Elizabeth Brown, and Linda Smith argue that a clear link exists between resilience and feeling that life is meaningful. They argue that the experiences of people with disabilities can offer a template for how to develop resilience and cope with life changes (King, Brown and Smith 633). According to the Oxford English Dictionary Online, resilience is ‘the action or an act of rebounding or springing back’ (653). King et al add that several concepts are associated with resilience such as hardiness, a sense of coherence and learned optimism (633). Deveson, resilience ‘has come to mean an ability to confront adversity and still find hope and meaning in life’. She comments that it conjures up notions of heroism, endurance and determination (632). Each of these characteristics we might describe as inspirational. It is telling that both Deveson and King et al use people with disabilities as signifiers of resilience in practice. However, Katherine Runswick-Cole and Dan Goodley argue that this definition of resilience has not necessarily been useful to people with disabilities and instead recommend a definition of resilience that Deveson only alludes to. For Runswick-Cole and Goodley resilience can be located in social processes. They argue that a thorough investigation of resilience in the lives of people with disabilities considers the broader social and cultural restrictions placed on top of impairments rather than simply individualising resilience as a character trait of people who can ‘overcome the odds’: An exploration of resilience in the lives of disabled people must, then, focus on what resources are available and who is accessing those resources. Crucially, in seeking to build resilience in the lives of disabled people, this can never simply be a matter of building individual capacity or family support, it must also be a case of challenging social, attitudinal and structural barriers which increase adversity in the lives of disabled people. (634) This is an alternative approach to disability that sees ‘the problem’ located in social structures and inaccessible environments. This so-called social model of disability is based on principles of empowerment and argues that able-bodied mainstream society disables people who have impairments through an inaccessible built environment and the perpetuation of stereotypes and prejudicial attitudes. Disability Dustbins and Inspirational Cripples Arthur Frank, sociologist and author of The Wounded Storyteller, explains that ‘the human body, for all its resilience, is fragile; breakdown is built into it. Bodily predictability, if not the exception, should be regarded as exceptional; contingency ought to be accepted as normative’ (634). Frank argues that we do not want to admit that our bodies are unpredictable and could ‘break down’ at any moment. Those bodies that do break down therefore become representatives of many of the things [the able-bodied, normal world] most fear-tragedy, loss, dark and the unknown. Involuntarily we walk- or more often sit- in the valley of the shadow of death. Contact with us throws up in people's faces the fact of sickness and death in the world … A deformed and paralysed body attacks everyone's sense of well-being and invincibility. (Hunt 186) People with disabilities therefore become loaded cultural signifiers, as Tom Shakespeare argues in Cultural Representations of Disabled People: Dustbins for Disavowal: ‘it is non-disabled people’s embodiment which is the issue: disabled people remind non-disabled people of their own vulnerability’ (139). As a result, people with disabilities are culturally othered. Several disability theorists have argued that this makes the non-disabled feel better about themselves and their tenuous privileged position (Barnes; Ellis; Kumari Campbell; Oliver, Goggin and Newell; Shakespeare). Disability, as a concept, is both everywhere and nowhere. Generally considered a medical experience or personal tragedy, the discipline of critical disability studies has emerged to question why disability is considered an inherently negative experience and if there is more to disability than a body that has something wrong with it. Fiona Kumari Campbell suggests ableism – ‘the network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species typical and therefore essential and fully human’ – is repeatedly performed in our culture. This cultural project is difficult to sustain because by their very nature all bodies are out of control. People with disability are an acute reminder of the temporariness of an able bodied ontology (650). In order to maintain this division and network of beliefs, the idea that disability is a personal tragedy rather than a set of social relations designed to exclude some bodies but not others is culturally reproduced through stereotypes such as the idea that people with disabilities who achieve both ordinary and extraordinary things are sources of inspiration. Resilience as a personal quality is implicated in this stereotype. In a powerful Ramp Up blog that was republished on the ABC’s Drum and the influential popular culture/mummy blogging site website Mamamia, Stella Young takes issues with the media’s framing of disability as inspirational: We all learn how to use the bodies we're born with, or learn to use them in an adjusted state, whether those bodies are considered disabled or not. So that image of the kid drawing a picture with the pencil held in her mouth instead of her hand? That's just the best way for her, in her body, to do it. For her, it's normal. I can't help but wonder whether the source of this strange assumption that living our lives takes some particular kind of courage is the news media, an incredibly powerful tool in shaping the way we think about disability. Most journalists seem utterly incapable of writing or talking about a person with a disability without using phrases like "overcoming disability", "brave", "suffers from", "defying the odds", "wheelchair bound" or, my personal favourite, "inspirational". If we even begin to question the way we're labelled, we slide immediately to the other end of the scale and become "bitter" and "ungrateful". We fail to be what people expect. (610) These phrases, that Young claims the media rely on to isolate people with disabilities, are synonyms for the qualities Deveson attributes to resilient individuals (632). As Beth Haller notes, although disabled activists and academics attempt to progress important political work, the news media continue to frame people with disability as courageous and inspirational simply for living their lives (216). By comparison, disability theorist Irving Zola describes rejecting his leg braces (symbolic of his professional status) electing instead to use a wheelchair: If we lived in a less healthiest, capitalist, and hierarchal society, which spent less time finding ways to exclude and disenfranchise people and more time finding ways to include and enhance the potentialities of everyone, then there wouldn’t have been so much for me to overcome. (654) Harilyn Russo agrees, and in her memoir Don’t Call Me Inspirational highlights the socially created barriers put in her way and the ways these are ignored in favour of individualising social disablement as something inspirational people ‘overcome’: I’ll tell you why I am inspirational: I put up with the barriers, the barricades, the bullsh*t you put between us to avoid confronting something—probably yourself—and still pay the rent on time and savor dark chocolate. Now that takes real courage. (651) Throughout her book, Russo seeks to ‘overcome disability prejudice’ rather than ‘overcome disability’. Russo establishes herself and her experiences as normal and every day while articulating the tedium she finds in being pigeon holed as inspirational. These authors are constructing a new way of thinking about disability. Michael Oliver first described this as the ‘social model of disability’ in 1981. He sought to overturn the pathologisation of disability by giving people ‘a way of applying the idea that it was society not people with impairments that should be the target for professional intervention and practice’ (Runswick-Cole and Goodley 634). Resilience: A Key Concept Fiona Kumari Campbell questions whether resilience is a useful concept in the context of disability and reflects on its use to obscure “the ‘real’ problem, namely disability oppression” (649). She interrogates traditional definitions of resilience as they draw on notions of good outcomes in spite of risk factors or experiences of severe trauma and calls for an understanding of the interactive and dynamic features of resilience as opposed to ‘individualised psychological attributes’. Thus, individualised notions of resilience as they are implicated in the cultural stories of inspirational people with disabilities are embedded within the ableist relations that Kumari Campbell seeks to expose. In Empowerment, Self-Advocacy and Resilience, Dan Goodley argues that resilience is a key concept that has repeatedly emerged throughout his research into disability and self-advocacy. He draws on the reflections of people with disabilities to offer a re-definition of resilience as a response to a disabling society that includes five interrelated aspects (648). First is resilience as contextual, which recognises resilience as the result of the contexts in which it emerges, including through relationships with others and the experience of disabling and enabling environments. Secondly, resilience complicates preconceived notions about people with disabilities such as the view that they are passive. Goodley’s third feature of resilience is optimism. He notes resistance toward oppression as a key characteristic of optimistic resilience. Goodley again considers the importance of interpersonal relationships and group identity when he argues that the fourth feature of resilience relies on people with disabilities forming relationships with each other and group identities to question their oppression. Finally, Goodley argues ‘resilience is indicative of disablement’ and suggests that people with disability must be resilient in everyday life because we live in a disabling society. Kumari Campbell posits that individualised notions of resilience are a ‘cop out’ designed to ‘distract and defuse the reality of people labouring under very difficult circ*mstances of which the solution is better access to quality services’. She is hopeful, like Goodley, that resilience can be redefined as a political project, and encourages people with disabilities to develop a critical consciousness and find a new sense of community through art, humour and peer support. Therefore, according to Kumari Campbell and Goodley, resilience can be redefined as a response to social disablement rather than bodily impairment. Disability Culture: Acts of Resilience in a Disabling Society Russo and Zola’s work is part of a disability culture that has emerged in response to narrow ways of understanding disability. Steven Brown emphasises the importance of experience and personal identity in his definition of disability culture: People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives and our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. (520) Brown’s definition of disability culture therefore draws on all five of Goodley’s features of resilience. Disability culture is contextual, complicating, optimistic, interpersonal and indicative of disablement. The forging of a group identity reveals the resilience of disability culture as contextual and interpersonal. The creation of art, music, literature and other cultural artefacts reveals resilience as optimistic. The notion that people with disabilities are proud of their identity complicates traditional understandings of disability as a personal tragedy. Brown’s emphasis on the common history of the oppression of people with disabilities, as it initiated the whole disability culture movement, is ‘indicative of disablement’. The bonds of resilience that create the disability cultural movement are a result of the social oppression of people with disabilities (Gill; Martin; Brown; Goodley). Conclusion Whereas people with disabilities going about their every day lives have often been considered inspirational and as possessing resilient qualities, a new disability culture is emerging that repositions the resilience of people with disabilities as a political response to social oppression. Drawing on Runswick-Cole and Goodley’s argument that individualising qualities of resilience in inspirational people with disabilities has not benefitted people with disabilities, this paper sought to reveal the importance of resilience as a response to social oppression. People with disabilities in their formation of a disability cultural movement are reworking and redefining resilience as a response to oppression. Throughout this paper I have drawn on the reflections of a number of people with disabilities to illustrate the emergence of a disability culture as it has begun the work of redefining resilience as a political project that “‘outs’ the problems that disabled people face and names and prioritises the concerns” (Kumari Campbell 649). As Goodley argues, people with disabilities have developed a politics of resilience ‘in the face of a disabling world’. References Barnes, Colin. “Disabling Imagery and the Media: An Exploration of the Principles for Media Representations of Disabled People.” 1992. Brown, Steven. “What Is Disability Culture?” Disability Studies Quarterly 22.2 (2002). Clear, Mike. Promises, Promises: Disability and Terms of Inclusion. Leichhardt: Federation Press, 2000. Deveson, Ann. Resilience. Crows Nest: Allen & Unwin, 2003. Ellis, Katie. Disabling Diversity: The Social Construction of Disability in 1990s Australian National Cinema. Saarbrücken, Germany: VDM Verlag, 2008. Frank, Arthur. The Wounded Storyteller: Body, Illness and Ethics. Chicago: The University of Chicago Press, 1995. Gill, Carol. “A Psychological View of Disability Culture.” Disability Studies Quarterly (Fall 1995). ———. "Disability in Australia: Exposing a Social Apartheid." Sydney: University of New South Wales, 2005. Goodley, Dan. “Empowerment, Self-Advocacy and Resilience.” Journal of Intellectual Disabilities 9.4 (2005): 333-343. Haller, Beth. Representing Disability in an Ableist World: Essays on Mass Media. Louisville, KY: Avocado Press, 2010. Hunt, Paul. “A Critical Condition.” Stigma: The Experience of Disability. Ed. Paul Hunt. London: Geoffrey Chapman, 1966. King, Gillian, Elizabeth Brown, and Linda Smith. “Resilience: Learning from People with Disabilities and the Turning Points in Their Lives.” Health Psychology. Ed. Barbara, Tinsley. Westport, CT: Praeger, 2003. Kumari Campbell, Fiona. Contours of Ableism: The Production of Disability and Abledness. New York: Palgrave Macmillian, 2009. ———. “Out of the Shadows: Resilience and Living with Ableism Seminar.” The University of Dundee, 13 Sep. 2010. Martin-Breen, Patrick, and J. Marty Anderies. “Resilience: A Literature Review.” The Rockefeller Foundation, 2011. Martin, Douglas. Disability Culture: Eager to Bite the Hands That Would Feed Them. New York Times, 1997. Oliver, Mike. “Understanding Disability: From Theory to Practice.” Houndsmill, Basingstoke: Macmillian, 1996. Oxford English Dictionary. “resilience, n.” Oxford University Press. Richardson, G. E. “The Metatheory of Resilience and Resiliency,” Journal of Clinical Psychology 58.3. (2002): 307-321. Rousso, Harilyn. "Don’t Call Me Inspirational: A Disabled Feminist Talks Back." Philadelphia: Temple University Press. 2013. Runswick-Cole, Katherine, and Dan Goodley. “Resilience: A Disability Studies and Community Psychology Approach.” Social and Personality Psychology Compass 7. 2 (2013): 67-78. Shakespeare, Tom. “Cultural Representation of Disabled People: Dustbins for Disavowal?” Disability & Society 9.3 (1994): 283-299. Wilkes, Glenda. “Introduction – A Second Generation of Resilience Research.” Journal of Clinical Psychology 58.3 (2002): 229-232. Young, Stella. “We’re Not Here for Your Inspiration.” Ramp Up 2012. Zola, Irving. Missing Pieces: A Chronicle of Living with a Disability. Philadelphia: Temple University Press. 1982.

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Introduction: Conceptualizing DisabilityThe two most prominent models for understanding disability are the medical model and the social model (“Disability”). The medical model locates disability in the person and emphasises the possibility of a cure, reinforcing the idea that disability is the fault of the disabled person, their body, their genes, and/or their upbringing. The social model, formulated as a response to the medical model, presents disability as a failure of the surrounding environment to accommodate differently abled bodies and minds. Closely linked to identity politics, the social model argues that disability is not a defect to be fixed but a source of human experience and identity, and that to disregard the needs of people with disability is to discriminate against them by being “ableist.”Both models have limitations. On the one hand, simply being a person with disability or having any other minority identity/-ies does not by itself lead to exclusion and discrimination (Nocella 18); an element of social valuation must be present that goes beyond a mere numbers game. On the other hand, merely focusing on the social aspect neglects “the realities of sickness, suffering, and pain” that many people with disability experience (Mollow 196) and that cannot be substantially alleviated by any degree of social change. The body is irreducible to discourse and representation (Siebers 749). Disability exists only at the confluence of differently abled minds and bodies and unaccommodating social and physical environs. How a body “fits” (my word) its environment is the focus of the “ecosomatic paradigm” (Cella 574-75); one example is how the drastically different environment of Cormac McCarthy’s The Road (2006) reorients the coordinates of ability and impairment (Cella 582–84). I want to examine a novel that, conversely, features a change not in environment but in body.Alien LegsTim Farnsworth, the protagonist of Joshua Ferris’s second novel, The Unnamed (2010), is a high-powered New York lawyer who develops a condition that causes him to walk spontaneously without control over direction or duration. Tim suffers four periods of “walking,” during which his body could without warning stand up and walk at any time up to the point of exhaustion; each period grows increasingly longer with more frequent walks, until the fourth one ends in Tim’s death. As his wife, Jane, understands it, these forced excursions are “a hijacking of some obscure order of the body, the frightened soul inside the runaway train of mindless matter” (24). The direction is not random, for his legs follow roads and traffic lights. When Tim is exhausted, his legs abruptly stop, ceding control back to his conscious will, whence Tim usually calls Jane and then sleeps like a baby wherever he stops. She picks him up at all hours of the day and night.Contemporary critics note shades of Beckett in both the premise and title of the novel (“Young”; Adams), connections confirmed by Ferris (“Involuntary”); Ron Charles mentions the Poe story “The Man of the Crowd” (1845), but it seems only the compulsion to walk is similar. Ferris says he “was interested in writing about disease” (“Involuntary”), and disability is at the core of the novel; Tim more than once thinks bitterly to himself that the smug person without disability in front of him will one day fall ill and die, alluding to the universality of disability. His condition is detrimental to his work and life, and Stuart Murray explores how this reveals the ableist assumptions behind the idea of “productivity” in a post-industrial economy. In one humorous episode, Tim arrives unexpectedly (but volitionally) at a courtroom and has just finished requesting permission to join the proceedings when his legs take him out of the courtroom again; he barely has time to shout over his shoulder, “on second thought, Your Honor” (Ferris Unnamed 103). However, Murray does not discuss what is unique about Tim’s disability: it revolves around walking, the paradigmatic act of ability in popular culture, as connoted in the phrase “to stand up and walk.” This makes it difficult to understand Tim’s predicament solely in terms of either the medical or social model. He is able-bodied—in fact, we might say he is “over-able”—leading one doctor to label his condition “benign idiopathic perambulation” (41; my emphasis); yet the lack of agency in his walking precludes it from becoming a “pedestrian speech act” (de Certeau 98), walking that imbues space with semiotic value. It is difficult to imagine what changes society could make to neutralize Tim’s disability.The novel explores both avenues. At first, Tim adheres to the medical model protocol of seeking a diagnosis to facilitate treatment. He goes to every and any (pseudo)expert in search of “the One Guy” who can diagnose and, possibly, cure him (53), but none can; a paper in The New England Journal of Medicine documents psychiatrists and neurologists, finding nothing, kicking the can between them, “from the mind to body back to the mind” (101). Tim is driven to seek a diagnosis because, under the medical model, a diagnosis facilitates understanding, by others and by oneself. As the Farnsworths experience many times, it is surpassingly difficult to explain to others that one has a disease with no diagnosis or even name. Without a name, the disease may as well not exist, and even their daughter, Becka, doubts Tim at first. Only Jane is able to empathize with him based on her own experience of menopause, incomprehensible to men, gesturing towards the influence of sex on medical hermeneutics (Mollow 188–92). As the last hope of a diagnosis comes up empty, Tim shifts his mentality, attempting to understand his condition through an idiosyncratic idiom: experiencing “brain fog”, feeling “mentally unsticky”, and having “jangly” nerves, “hyperslogged” muscles, a “floaty” left side, and “bunched up” breathing—these, to him, are “the most precise descriptions” of his physical and mental state (126). “Name” something, “revealing nature’s mystery”, and one can “triumph over it”, he thinks at one point (212). But he is never able to eschew the drive toward understanding via naming, and his “deep metaphysical ache” (Burn 45) takes the form of a lament at misfortune, a genre traceable to the Book of Job.Short of crafting a life for Tim in which his family, friends, and work are meaningfully present yet detached enough in scheduling and physical space to accommodate his needs, the social model is insufficient to make sense of, let alone neutralize, his disability. Nonetheless, there are certain aspects of his experience that can be improved with social adjustments. Tim often ends his walks by sleeping wherever he stops, and he would benefit from sensitivity training for police officers and other authority figures; out of all the authority figures who he encounters, only one shows consideration for his safety, comfort, and mental well-being prior to addressing the illegality of his behaviour. And making the general public more aware of “modes of not knowing, unknowing, and failing to know”, in the words of Jack Halberstam (qtd. in McRuer and Johnson 152), would alleviate the plight not just of Tim but of all sufferers of undiagnosed diseases and people with (rare forms of) disability.After Tim leaves home and starts walking cross-country, he has to learn to deal with his disability without any support system. The solution he hits upon illustrates the ecosomatic paradigm: he buys camping gear and treats his walking as an endless hike. Neither “curing” his body nor asking accommodation of society, Tim’s tools mediate a fit between body and environs, and it more or less works. For Tim the involuntary nomad, “everywhere was a wilderness” (Ferris Unnamed 247).The Otherness of the BodyProblems arise when Tim tries to fight his legs. After despairing of a diagnosis, he internalises the struggle against the “somatic noncompliance” of his body (Mollow 197) and refers to it as “the other” (207). One through-line of the novel is a (failed) attempt to overcome cartesian duality (Reiffenrath). Tim divides his experiences along cartesian lines and actively tries to enhance while short-circuiting the body. He recites case law and tries to take up birdwatching to maintain his mind, but his body constantly stymies him, drawing his attention to its own needs. He keeps himself ill-clothed and -fed and spurns needed medical attention, only to find—on the brink of death—that his body has brought him to a hospital, and that he stops walking until he is cured and discharged. Tim’s early impression that his body has “a mind of its own” (44), a situation comparable to the Strange Case of Dr Jekyll and Mr Hyde (1886; Ludwigs 123–24), is borne out when it starts to silently speak to him, monosyllabically at first (“Food!” (207)), then progressing to simple sentences (“Leg is hurting” (213)) and sarcasm (“Deficiency of copper causes anemia, just so you know” (216)) before arriving at full-blown taunting:The other was the interrogator and he the muttering subject […].Q: Are you aware that you can be made to forget words, if certain neurons are suppressed from firing?A: Certain what?Q: And that by suppressing the firing of others, you can be made to forget what words mean entirely? Like the word Jane, for instance.A: Which?Q: And do you know that if I do this—[inaudible]A: Oof!Q: —you will flatline? And if I do this—[inaudible]A: Aaa, aaa…Q: —you will cease flatlining? (223–24; emphases and interpolations in original except for bracketed ellipsis)His Jobean lament turns literal, with his mind on God’s side and his body, “the other”, on the Devil’s in a battle for his eternal soul (Burn 46). Ironically, this “God talk” (Ferris Unnamed 248) finally gets Tim diagnosed with schizophrenia, and he receives medication that silences his body, if not stilling his legs. But when he is not medicated, his body can dominate his mind with multiple-page monologues.Not long after Tim’s mind and body reach a truce thanks to the camping gear and medication, Tim receives word on the west coast that Jane, in New York, has terminal cancer; he resolves to fight his end-of-walk “narcoleptic episodes” (12) to return to her—on foot. His body is not pleased, and it slowly falls apart as Tim fights it eastward cross-country. By the time he is hospitalized “ten miles as the crow flies from his final destination”, his ailments include “conjunctivitis”, “leg cramps”, “myositis”, “kidney failure”, “chafing and blisters”, “shingles”, “back pain”, “bug bites, ticks, fleas and lice”, “sun blisters”, “heatstroke and dehydration”, “rhabdomyolysis”, “excess [blood] potassium”, “splintering [leg] bones”, “burning tongue”, “[ballooning] heels”, “osteal complications”, “acute respiratory distress syndrome”, “excess fluid [in] his peritoneal cavity”, “brain swelling”, and a coma (278–80)—not including the fingers and toes lost to frostbite during an earlier period of walking. Nevertheless, he recovers and reunites with Jane, maintaining a holding pattern by returning to Jane’s hospital bedside after each walk.Jane recovers; the urgency having dissipated, Tim goes back on the road, confident that “he had proven long ago that there was no circ*mstance under which he could not walk if he put his mind to it” (303). A victory for mind over body? Not quite. The ending, Tim’s death scene, planned by Ferris from the beginning (Ferris “Tracking”), manages to grant victory to both mind and body without uniting them: his mind keeps working after physical death, but its last thought is of a “delicious […] cup of water” (310). Mind and body are two, but indivisible.Cartesian duality has relevance for other significant characters. The chain-smoking Detective Roy, assigned the case Tim is defending, later appears with oxygen tank in tow due to emphysema, yet he cannot quit smoking. What might have been a mere shortcut for characterization here carries physical consequences: the oxygen tank limits Roy’s movement and, one supposes, his investigative ability. After Jane recovers, Tim visits Frank Novovian, the security guard at his old law firm, and finds he has “gone fat [...] His retiring slouch behind the security post said there was no going back”; recognising Tim, Frank “lifted an inch off [his] chair, righting his jellied form, which immediately settled back into place” (297; my emphases). Frank’s physical state reflects the state of his career: settled. The mind-body antagonism is even more stark among Tim’s lawyer colleagues. Lev Wittig cannot become sexually aroused unless there is a “rare and extremely venomous snak[e]” in the room with no lights (145)—in direct contrast to his being a corporate tax specialist and the “dullest person you will ever meet” (141). And Mike Kronish famously once billed a twenty-seven-hour workday by crossing multiple time zones, but his apparent victory of mind over matter is undercut by his other notable achievement, being such a workaholic that his grown kids call him “Uncle Daddy” (148).Jane offers a more vexed case. While serving as Tim’s primary caretaker, she dreads the prospect of sacrificing the rest of her life for him. The pressures of the consciously maintaining her wedding vows directly affects her body. Besides succumbing to and recovering from alcoholism, she is twice tempted by the sexuality of other men; the second time, Tim calls her at the moment of truth to tell her the walking has returned, but instead of offering to pick him up, she says to him, “Come home” (195). As she later admits, asking him to do the impossible is a form of abandonment, and though causality is merely implied, Tim decides a day later not to return. Cartesian duality is similarly blurred in Jane’s fight against cancer. Prior to developing cancer, it is the pretence for Tim’s frequent office absences; she develops cancer; she fights it into remission not by relying on the clinical trial she undergoes, but because Tim’s impossible return inspires her; its remission removes the sense of urgency keeping Tim around, and he leaves; and he later learns that she dies from its recurrence. In multiple senses, Jane’s physical challenges are inextricable from her marriage commitment. Tim’s peripatetic condition affects both of them in hom*ologous ways, gesturing towards the importance of disability studies for understanding the experience both of people with disability and of their caretakers.Becka copes with cartesian duality in the form of her obesity, and the way she does so sets an example for Tim. She gains weight during adolescence, around the time Tim starts walking uncontrollably, and despite her efforts she never loses weight. At first moody and depressed, she later channels her emotions into music, eventually going on tour. After one of her concerts, she tells Tim she has accepted her body, calling it “my one go-around,” freeing her from having to “hate yourself till the bitter end” (262) to instead enjoy her life and music. The idea of acceptance stays with Tim; whereas in previous episodes of walking he ignored the outside world—another example of reconceptualizing walking in the mode of disability—he pays attention to his surroundings on his journey back to New York, which is filled with descriptions of various geographical, meteorological, biological, and sociological phenomena, all while his body slowly breaks down. By the time he leaves home forever, he has acquired the habit of constant observation and the ability to enjoy things moment by moment. “Beauty, surprisingly, was everywhere” (279), he thinks. Invoking the figure of the flâneur, which Ferris had in mind when writing the novel (Ferris “Involuntary”), Peter Ferry argues that “becoming a 21st century incarnation of the flâneur gives Tim a greater sense of selfhood, a belief in the significance of his own existence within the increasingly chaotic and disorientating urban environment” (59). I concur, with two caveats: the chaotic and disorienting environment is not merely urban; and, contrary to Ferry’s claim that this regained selfhood is in contrast to “disintegrating” “conventional understandings of masculinity” (57), it instead incorporates Tim’s new identity as a person with disability.Conclusion: The Experience of DisabilityMore than specific insights into living with disability, the most important contribution of The Unnamed to disability studies is its exploration of the pure experience of disability. Ferris says, “I wanted to strip down this character to the very barest essentials and see what happens when sickness can’t go away and it can’t be answered by all [sic] of the medical technology that the country has at its disposal” (“Tracking”); by making Tim a wealthy lawyer with a caring family—removing common complicating socioeconomic factors of disability—and giving him an unprecedented impairment—removing all medical support and social services—Ferris depicts disability per se, illuminating the importance of disability studies for all people with(out) disability. After undergoing variegated experiences of pure disability, Tim “maintained a sound mind until the end. He was vigilant about periodic checkups and disciplined with his medication. He took care of himself as best he could, eating well however possible, sleeping when his body required it, […] and he persevered in this manner of living until his death” (Ferris Unnamed 306). This is an ideal relation to maintain between mind, body, and environment, irrespective of (dis)ability.ReferencesAdams, Tim. “The Unnamed by Joshua Ferris.” Fiction. Observer, 21 Feb. 2010: n. pag. 19 Sep. 2018 <https://www.theguardian.com/books/2010/feb/21/the-unnamed-joshua-ferris>.Burn, Stephen J. “Mapping the Syndrome Novel.” Diseases and Disorders in Contemporary Fiction: The Syndrome Syndrome. Eds. T.J. Lustig and James Peaco*ck. New York: Routledge, 2013. 35-52.Cella, Matthew J.C. “The Ecosomatic Paradigm in Literature: Merging Disability Studies and Ecocriticism.” Interdisciplinary Studies in Literature and Environment 20.3 (2013): 574–96.De Certeau, Michel. The Practice of Everyday Life. 1980. Trans. Steven Rendall. Berkeley: U of California P, 1984.Charles, Ron. “Book World Review of Joshua Ferris’s ‘The Unnamed.’” Books. Washington Post 20 Jan. 2010: n. pag. 19 Sep. 2018 <http://www.washingtonpost.com/wp-dyn/content/article/2010/01/19/AR2010011903945.html>.“Disability.” Wikipedia: The Free Encyclopedia 17 Sep. 2018. 19 Sep. 2018 <https://en.wikipedia.org/wiki/Disability>.Ferris, Joshua. “Involuntary Walking; the Joshua Ferris Interview.” ReadRollShow. Created by David Weich. Sheepscot Creative, 2010. Vimeo, 9 Mar. 2010. 18 Sep. 2018 <https://www.vimeo.com/10026925>. [My transcript.]———. “Tracking a Man’s Life, in Endless Footsteps.” Interview by Melissa Block. All Things Considered, NPR, 15 Feb. 2010. 18 Sep. 2018 <https://www.npr.org/templates/transcript/transcript.php?storyId=123650332>.———. The Unnamed: A Novel. New York: Little, Brown, 2010.Ferry, Peter. “Reading Manhattan, Reading Masculinity: Reintroducing the Flâneur with E.B. White’s Here Is New York and Joshua Ferris’ The Unnamed.” Culture, Society & Masculinities 3.1 (2011): 49–61.Ludwigs, Marina. “Walking as a Metaphor for Narrativity.” Studia Neophilologica 87.1 (Suppl. 1) (2015): 116–28.McCarthy, Cormac. The Road. New York: Vintage, 2006.McRuer, Robert, and Merri Lisa Johnson. “Proliferating Cripistemologies: A Virtual Roundtable.” Journal of Literary and Cultural Disability Studies 8.2 (2014): 149–69.Mollow, Anna. “Criphystemologies: What Disability Theory Needs to Know about Hysteria.” Journal of Literary and Cultural Disability Studies 8.2 (2014): 185–201.Murray, Stuart. “Reading Disability in a Time of Posthuman Work: Speed and Embodiment in Joshua Ferris’ The Unnamed and Michael Faber’s Under the Skin.” Disability Studies Quarterly 37.4 (2017). 20 May 2018 <http://dsq–sds.org/article/view/6104/4823/>.Nocella, Anthony J., II. “Defining Eco–Ability: Social Justice and the Intersectionality of Disability, Nonhuman Animals, and Ecology.” Earth, Animal, and Disability Liberation: The Rise of the Eco–Ability Movement. Eds. Anthony J. Nocella II, Judy K.C. Bentley, and Janet M. Duncan. New York: Peter Lang, 2012. 3–21.Poe, Edgar Allan. “The Man of the Crowd.” 1845. PoeStories.com. 18 Sep. 2018 <https://poestories.com/read/manofthecrowd>.Reiffenrath, Tanja. “Mind over Matter? Joshua Ferris’s The Unnamed as Counternarrative.” [sic] – a journal of literature, culture and literary translation 5.1 (2014). 20 May 2018 <https://www.sic–journal.org/ArticleView.aspx?aid=305/>.Siebers, Tobin. “Disability in Theory: From Social Constructionism to the New Realism of the Body.” American Literary History 13.4 (2001): 737–54.“The Young and the Restless.” Review of The Unnamed by Joshua Ferris. Books and Arts. Economist, 28 Jan. 2010: n. pag. 19 Sep. 2018 <https://www.economist.com/books-and-arts/2010/01/28/the-young-and-the-restless>.

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Abstract:

RACHAEL. It seems you feel our work is not a benefit to the public.DECKARD. Replicants are like any other machine. They're either a benefit or a hazard. If they're a benefit it's not my problem.RACHAEL. May I ask you a personal question?DECKARD. Yes.RACHAEL. Have you every retired a human by mistake? (Scott 17:30) CAPTCHAs (henceforth "captchas") are commonplace on today's Internet. Their purpose seems clear: block malicious software, allow human users to pass. But as much as they exclude spambots, captchas often exclude humans with visual and other disabilities (Dzieza; W3C Working Group). Worse yet, more and more advanced captcha-breaking technology has resulted in more and more challenging captchas, raising the barrier between online services and those who would access them. In the words of inclusive design advocate Robin Christopherson, "CAPTCHAs are evil". In this essay I describe how the captcha industry implements a posthuman process that speculative fiction has gestured toward but not grasped. The hostile posthumanity of captcha is not just a technical problem, nor just a problem of usability or access. Rather, captchas convey a design philosophy that asks humans to prove themselves by performing well at disembodied games. This philosophy has its roots in the Turing Test itself, whose terms guide speculation away from the real problems that today's authentication systems present. Drawing the concept of "procedurality" from game studies, I argue that, despite a design goal of separating machines and humans to the benefit of the latter, captchas actually and ironically produce an arms race in which humans have a systematic and increasing disadvantage. This arms race results from the Turing Test's equivocation between human and machine bodies, an assumption whose influence I identify in popular film, science fiction literature, and captcha design discourse. The Captcha Industry and Its Side-Effects Exclusion is an essential function of every cybersecurity system. From denial-of-service attacks to data theft, toxic automated entities constantly seek admission to services they would damage. To remain functional and accessible, Websites need security systems to keep out "abusive agents" (Shet). In cybersecurity, the term "user authentication" refers to the process of distinguishing between abusive agents and welcome users (Jeng et al.). Of the many available authentication techniques, CAPTCHA, "Completely Automated Public Turing test[s] to tell Computers and Humans Apart" (Von Ahn et al. 1465), is one of the most iconic. Although some captchas display a simple checkbox beside a disclaimer to the effect that "I am not a robot" (Shet), these frequently give way to more difficult alternatives: perception tests (fig. 1). Test captchas may show sequences of distorted letters, which a user is supposed to recognise and then type in (Godfrey). Others effectively digitize a game of "I Spy": an image appears, with an instruction to select the parts of it that show a specific type of object (Zhu et al.). A newer type of captcha involves icons rotated upside-down or sideways, the task being to right them (Gossweiler et al.). These latter developments show the influence of gamification (Kani and Nishigaki; Kumar et al.), the design trend where game-like elements figure in serious tasks. Fig. 1: A series of captchas followed by multifactor authentication as a "quick security check" during the author's suspicious attempt to access LinkedIn over a Virtual Private Network Gamified captchas, in using tests of ability to tell humans from computers, invite three problems, of which only the first has received focussed critical attention. I discuss each briefly below, and at greater length in subsequent sections. First, as many commentators have pointed out (W3C Working Group), captchas can accidentally categorise real humans as nonhumans—a technical problem that becomes more likely as captcha-breaking technologies improve (e.g. Tam et al.; Brown et al.). Indeed, the design and breaking of captchas has become an almost self-sustaining subfield in computer science, as researchers review extant captchas, publish methods for breaking them, and publish further captcha designs (e.g. Weng et al.). Such research fuels an industry of captcha-solving services (fig. 2), of which some use automated techniques, and some are "human-powered", employing groups of humans to complete large numbers of captchas, thus clearing the way for automated incursions (Motoyama et al. 2). Captchas now face the quixotic task of using ability tests to distinguish legitimate users from abusers with similar abilities. Fig. 2: Captcha production and captcha breaking: a feedback loop Second, gamified captchas import the feelings of games. When they defeat a real human, the human seems not to have encountered the failure state of an automated procedure, but rather to have lost, or given up on, a game. The same frame of "gameful"-ness (McGonigal, under "Happiness Hacking") or "gameful work" (under "The Rise of the Happiness Engineers"), supposed to flatter users with a feeling of reward or satisfaction when they complete a challenge, has a different effect in the event of defeat. Gamefulness shifts the fault from procedure to human, suggesting, for the latter, the shameful status of loser. Third, like games, gamified captchas promote a particular strain of logic. Just as other forms of media can be powerful venues for purveying stereotypes, so are gamified captchas, in this case conveying the notion that ability is a legitimate means, not only of apportioning privilege, but of humanising and dehumanising. Humanity thus appears as a status earned, and disability appears not as a stigma, nor an occurrence, but an essence. The latter two problems emerge because the captcha reveals, propagates and naturalises an ideology through mechanised procedures. Below I invoke the concept of "procedural rhetoric" to critique the disembodied notion of humanity that underlies both the original Turing Test and the "Completely Automated Public Turing test." Both tests, I argue, ultimately play to the disadvantage of their human participants. Rhetorical Games, Procedural Rhetoric When videogame studies emerged as an academic field in the early 2000s, once of its first tasks was to legitimise games relative to other types of artefact, especially literary texts (Eskelinen; Aarseth). Scholars sought a framework for discussing how video games, like other more venerable media, can express ideas (Weise). Janet Murray and Ian Bogost looked to the notion of procedure, devising the concepts of "procedurality" (Bogost 3), "procedural authorship" (Murray 171), and "procedural rhetoric" (Bogost 1). From a proceduralist perspective, a videogame is both an object and a medium for inscribing processes. Those processes have two basic types: procedures the game's developers have authored, which script the behaviour of the game as a computer program; and procedures human players respond with, the "operational logic" of gameplay (Bogost 13). Procedurality's two types of procedure, the computerised and the human, have a kind of call-and-response relationship, where the behaviour of the machine calls upon players to respond with their own behaviour patterns. Games thus train their players. Through the training that is play, players acquire habits they bring to other contexts, giving videogames the power not only to express ideas but "disrupt and change fundamental attitudes and beliefs about the world, leading to potentially significant long-term social change" (Bogost ix). That social change can be positive (McGonigal), or it can involve "dark patterns", cases where game procedures provoke and exploit harmful behaviours (Zagal et al.). For example, embedded in many game paradigms is the procedural rhetoric of "toxic meritocracy" (Paul 66), where players earn rewards, status and personal improvement by overcoming challenges, and, especially, excelling where others fail. While meritocracy may seem logical within a strictly competitive arena, its effect in a broader cultural context is to legitimise privileges as the spoils of victory, and maltreatment as the just result of defeat. As game design has influenced other fields, so too has procedurality's applicability expanded. Gamification, "the use of game design elements in non-game contexts" (Deterding et al. 9), is a popular trend in which designers seek to imbue diverse tasks with some of the enjoyment of playing a game (10). Gamification discourse has drawn heavily upon Mihaly Csikszentmihalyi's "positive psychology" (Seligman and Csikszentmihalyi), and especially the speculative psychology of flow (Csikszentmihalyi 51), which promise enormously broad benefits for individuals acting in the "flow state" that challenging play supposedly promotes (75). Gamification has become a celebrated cause, advocated by a group of scholars and designers Sebastian Deterding calls the "Californian league of gamification evangelists" (120), before becoming an object of critical scrutiny (Fuchs et al.). Where gamification goes, it brings its dark patterns with it. In gamified user authentication (Kroeze and Olivier), and particularly gamified captcha, there occurs an intersection of deceptively difficult games, real-world stakes, and users whose differences go often ignored. The Disembodied Arms Race In captcha design research, the concept of disability occurs under the broader umbrella of usability. Usability studies emphasise the fact that some technology pieces are easier to access than others (Yan and El Ahmad). Disability studies, in contrast, emphasises the fact that different users have different capacities to overcome access barriers. Ability is contextual, an intersection of usability and disability, use case and user (Reynolds 443). When used as an index of humanness, ability yields illusive results. In Posthuman Knowledge, Rosi Braidotti begins her conceptual enquiry into the posthuman condition with a contemplation of captcha, asking what it means to tick that checkbox claiming that "I am not a robot" (8), and noting the baffling multiplicity of possible answers. From a practical angle, Junya Kani and Masakatsu Nishigaki write candidly about the problem of distinguishing robot from human: "no matter how advanced malicious automated programs are, a CAPTCHA that will not pass automated programs is required. Hence, we have to find another human cognitive processing capability to tackle this challenge" (40). Kani and Nishigaki try out various human cognitive processing capabilities for the task. Narrative comprehension and humour become candidates: might a captcha ascribe humanity based on human users' ability to determine the correct order of scenes in a film (43)? What about panels in a cartoon (40)? As they seek to assess the soft skills of machines, Kani and Nishigaki set up a drama similar to that of Philip K. Dick's Do Androids Dream of Electric Sheep. Do Androids Dream of Electric Sheep, and its film adaptation, Blade Runner (Scott), describe a spacefaring society populated by both humans and androids. Androids have lesser legal privileges than humans, and in particular face execution—euphemistically called "retirement"—for trespassing on planet Earth (Dick 60). Blade Runner gave these androids their more famous name: "replicant". Replicants mostly resemble humans in thought and action, but are reputed to lack the capacity for empathy, so human police, seeking a cognitive processing capability unique to humans, test for empathy to test for humanness (30). But as with captchas, Blade Runner's testing procedure depends upon an automated device whose effectiveness is not certain, prompting the haunting question: "have you ever retired a human by mistake?" (Scott 17:50). Blade Runner's empathy test is part of a long philosophical discourse about the distinction between human and machine (e.g. Putnam; Searle). At the heart of the debate lies Alan Turing's "Turing Test", which a machine hypothetically passes when it can pass itself off as a human conversationalist in an exchange of written text. Turing's motivation for coming up with the test goes: there may be no absolute way of defining what makes a human mind, so the best we can do is assess a computer's ability to imitate one (Turing 433). The aporia, however—how can we determine what makes a human mind?—is the result of an unfair question. Turing's test, dealing only with information expressed in strings of text, purposely disembodies both humans and machines. The Blade Runner universe similarly evens the playing field: replicants look, feel and act like humans to such an extent that distinguishing between the two becomes, again, the subject of a cognition test. The Turing Test, obsessed with information processing and steeped in mind-body dualism, assesses humanness using criteria that automated users can master relatively easily. In contrast, in everyday life, I use a suite of much more intuitive sensory tests to distinguish between my housemate and my laptop. My intuitions capture what the Turing Test masks: a human is a fleshy entity, possessed of the numerous trappings and capacities of a human body. The result of the automated Turing Test's focus on cognition is an arms race that places human users at an increasing disadvantage. Loss, in such a race, manifests not only as exclusion by and from computer services, but as a redefinition of proper usership, the proper behaviour of the authentic, human, user. Thus the Turing Test implicitly provides for a scenario where a machine becomes able to super-imitate humanness: to be perceived as human more often than a real human would be. In such an outcome, it would be the human conversationalist who would begin to fail the Turing test; to fail to pass themself off according to new criteria for authenticity. This scenario is possible because, through procedural rhetoric, machines shift human perspectives: about what is and is not responsible behaviour; about what humans should and should not feel when confronted with a challenge; about who does and does not deserve access; and, fundamentally, about what does and does not signify authentic usership. In captcha, as in Blade Runner, it is ultimately a machine that adjudicates between human and machine cognition. As users we rely upon this machine to serve our interests, rather than pursue some emergent automated interest, some by-product of the feedback loop that results from the ideologies of human researchers both producing and being produced by mechanised procedures. In the case of captcha, that faith is misplaced. The Feeling of Robopocalypse A rich repertory of fiction has speculated upon what novelist Daniel Wilson calls the "Robopocalypse", the scenario where machines overthrow humankind. Most versions of the story play out as a slave-owner's nightmare, featuring formerly servile entities (which happen to be machines) violently revolting and destroying the civilisation of their masters. Blade Runner's rogue replicants, for example, are effectively fugitive slaves (Dihal 196). Popular narratives of robopocalypse, despite showing their antagonists as lethal robots, are fundamentally human stories with robots playing some of the parts. In contrast, the exclusion a captcha presents when it defeats a human is not metaphorical or emancipatory. There, in that moment, is a mechanised entity defeating a human. The defeat takes place within an authoritative frame that hides its aggression. For a human user, to be defeated by a captcha is to fail to meet an apparently common standard, within the framework of a common procedure. This is a robopocalypse of baffling systems rather than anthropomorphic soldiers. Likewise, non-human software clients pose threats that humanoid replicants do not. In particular, software clients replicate much faster than physical bodies. The sheer sudden scale of a denial-of-service attack makes Philip K. Dick's vision of android resistance seem quaint. The task of excluding unauthorised software, unlike the impulse to exclude replicants, is more a practical necessity than an exercise in colonialism. Nevertheless, dystopia finds its way into the captcha process through the peril inherent in the test, whenever humans are told apart from authentic users. This is the encroachment of the hostile posthuman, naturalised by us before it denaturalises us. The hostile posthuman sometimes manifests as a drone strike, Terminator-esque (Cameron), a dehumanised decision to kill (Asaro). But it is also a process of gradual exclusion, detectable from moment to moment as a feeling of disdain or impatience for the irresponsibility, incompetence, or simply unusualness of a human who struggles to keep afloat of a rising standard. "We are in this together", Braidotti writes, "between the algorithmic devil and the acidified deep blue sea" (9). But we are also in this separately, divided along lines of ability. Captcha's danger, as a broken procedure, hides in plain sight, because it lashes out at some only while continuing to flatter others with a game that they can still win. Conclusion Online security systems may always have to define some users as legitimate and others as illegitimate. Is there a future where they do so on the basis of behaviour rather than identity or essence? Might some future system accord each user, human or machine, the same authentic status, and provide all with an initial benefit of the doubt? In the short term, such a system would seem grossly impractical. The type of user that most needs to be excluded is the disembodied type, the type that can generate orders of magnitude more demands than a human, that can proliferate suddenly and in immense number because it does not lag behind the slow processes of human bodies. This type of user exists in software alone. Rich in irony, then, is the captcha paradigm which depends on the disabilities of the threats it confronts. We dread malicious software not for its disabilities—which are momentary and all too human—but its abilities. Attenuating the threat presented by those abilities requires inverting a habit that meritocracy trains and overtrains: specifically, we have here a case where the plight of the human user calls for negative action toward ability rather than disability. 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Indigenous cross-cultural training has been around since the 1980s. It is often seen as a way to increase the skills and competency of staff engaged in providing service to Indigenous clients and customers, teaching Indigenous students within universities and schools, or working with Indigenous communities (Fredericks and Bargallie, “Indigenous”; “Which Way”). In this article we demonstrate how such training often exposes power, whiteness, and concepts of an Indigenous “other”. We highlight how cross-cultural training programs can potentially provide a setting in which non-Indigenous participants can develop a deeper realisation of how their understandings of the “other” are formed and enacted within a “white” social setting. Revealing whiteness as a racial construct enables people to see race, and “know what racism is, what it is not and what it does” (Bargallie, 262). Training participants can use such revelations to develop their racial literacy and anti-racist praxis (Bargallie), which when implemented have the capacity to transform inequitable power differentials in their work with Indigenous peoples and organisations.What Does the Literature Say about Cross-Cultural Training? An array of names are used for Indigenous cross-cultural training, including cultural awareness, cultural competency, cultural responsiveness, cultural safety, cultural sensitivity, cultural humility, and cultural capability. Each model takes on a different approach and goal depending on the discipline or profession to which the training is applied (Hollinsworth). Throughout this article we refer to Indigenous cross-cultural training as “cultural competence” or “cultural awareness” and discuss these in relation to their application within higher education institutions. While literature on health and human services programs in Australia, Canada, New Zealand, and other nation states provide clear definitions of terms such as “cultural safety”, cultural competence or cultural awareness is often lacking a concise and consistent definition.Often delivered as a half day or a one to two-day training course, it is unrealistic to think that Indigenous cultural competence can be achieved through one’s mere attendance and participation. Moreover, when courses centre on “cultural differences” and enable revelations about those differences they are in danger of presenting idealised notions of Indigeneity. Cultural competence becomes a process through which an Indigenous “other” is objectified, while very little is offered by way of translating knowledge and skills into practice when working with Indigenous peoples.What this type of learning has the capacity to do is oversimplify and reinforce racism and racist stereotypes of Indigenous peoples and Indigenous cultures. What is generally believed is that if non-Indigenous peoples know more about Indigenous peoples and cultures, relationships between Indigenous and non-Indigenous peoples will somehow improve. The work of Goenpul scholar Aileen Moreton-Robinson is vital to draw on here, when she asks, has the intellectual investment in defining our cultural differences resulted in the valuing of our knowledges? Has the academy become a more enlightened place in which to work, and, more important, in what ways have our communities benefited? (xvii)What is revealed in a range of studies – whether centring on racism and discrimination or the ongoing disparities across health, education, incarceration, employment, and more – is that despite forty plus years of training focused on understanding cultural differences, very little has changed. Indigenous knowledges continue to be devalued and overlooked. Everyday and structural racisms shape everyday experiences for Indigenous employees in Australian workplaces such as the Australian Public Service (Bargallie) and the Australian higher education sector (Fredericks and White).As the literature demonstrates, the racial division of labour in such institutions often leaves Indigenous employees languishing on the lower rungs of the employment ladder (Bargallie). The findings of an Australian university case study, discussed below, highlights how power, whiteness, and concepts of “otherness” are exposed and play out in cultural competency training. Through their exposure, we argue that better understandings about Indigenous Australians, which are not based on culture difference but personal reflexivity, may be gained. Revealing What Was Needed in the Course’s Foundation and ImplementationThis case study is centred within a regional Australian university across numerous campuses. In 2012, the university council approved an Aboriginal and Torres Strait Islander strategy, which included a range of initiatives, including the provision of cross-cultural training for staff. In developing the training, a team explored the evidence as it related to university settings (Anning; Asmar; Butler and Young; Fredericks; Fredericks and Thompson; Kinnane, Wilks, Wilson, Hughes and Thomas; McLaughlin and Whatman). This investigation included what had been undertaken in other Australian universities (Anderson; University of Sydney) and drew on the recommendations from earlier research (Behrendt, Larkin, Griew and Kelly; Bradley, Noonan, Nugent and Scales; Universities Australia). Additional consultation took place with a broad range of internal and external stakeholders.While some literature on cross-cultural training centred on the need to understand cultural differences, others exposed the problems of focusing entirely on difference (Brach and Fraser; Campinha-Bacote; Fredericks; Spencer and Archer; Young). The courses that challenged the centrality of cultural difference explained why race needed to be at the core of its training, highlighting its role in enabling discussions of racism, bias, discrimination and how these may be used as means to facilitate potential individual and organisational change. This approach also addressed stereotypes and Eurocentric understandings of what and who is an Indigenous Australian (Carlson; Gorringe, Ross and Forde; Hollinsworth; Moreton-Robinson). It is from this basis that we worked and grew our own training program. Working on this foundational premise, we began to separate content that showcased the fluidity and diversity of Indigenous peoples and refrained from situating us within romantic notions of culture or presenting us as an exotic “other”. In other words, we embraced work that responded to non-Indigenous people’s objectified understandings and expectations of us. For example, the expectation that Indigenous peoples will offer a Welcome to Country, performance, share a story, sing, dance, or disseminate Indigenous knowledges. While we recognise that some of these cultural elements may offer enjoyment and insight to non-Indigenous people, they do not challenge behaviours or the nature of the relationships that non-Indigenous people have with Aboriginal and Torres Strait Islander peoples (Bargallie; Fredericks; Hollinsworth; Westwood and Westwood; Young).The other content which needed separating were the methods that enabled participants to understand and own their standpoints. This included the use of critical Indigenous studies as a form of analysis (Moreton-Robinson). Critical race theory (Delgado and Stefancic) was also used as a means for participants to interrogate their own cultural positionings and understand the pervasive nature of race and racism in Australian society and institutions (McLaughlin and Whatman). This offered all participants, both non-Indigenous and Indigenous, the opportunity to learn how institutional racism operates, and maintains discrimination, neglect, abuse, denial, and violence, inclusive of the continued subjugation that exists within higher education settings and broader society.We knew that the course needed to be available online as well as face-to-face. This would increase accessibility to staff across the university community. We sought to embed critical thinking as we began to map out the course, including the theory in the sections that covered colonisation and the history of Indigenous dispossession, trauma and pain, along with the ongoing effects of federal and state policies and legislations that locates racism at the core of Australian politics. In addition to documenting the ongoing effects of racism, we sought to ensure that Indigenous resistance, agency, and activism was highlighted, showing how this continues, thus linking the past to the contemporary experiences of Indigenous peoples.Drawing on the work of Bargallie we wanted to demonstrate how Aboriginal and Torres Strait Islander peoples experience racism through systems and structures in their everyday work with colleagues in large organisations, such as universities. Participants were asked to self-reflect on how race impacts their day-to-day lives (McIntosh). The final session of the training focused on the university’s commitment to “Closing the Gap” and its Reconciliation Action Plan (RAP). The associated activity involved participants working individually and in small groups to discuss and consider what they could contribute to the RAP activities and enact within their work environments. Throughout the training, participants were asked to reflect on their personal positioning, and in the final session they were asked to draw from these reflections and discuss how they would discuss race, racism and reconciliation activities with the governance of their university (Westwood and Westwood; Young).Revelations in the Facilitators, Observers, and Participants’ Discussions? This section draws on data collected from the first course offered within the university’s pilot program. During the delivery of the in-person training sessions, two observers wrote notes while the facilitators also noted their feelings and thoughts. After the training, the facilitators and observers debriefed and discussed the delivery of the course along with the feedback received during the sessions.What was noticed by the team was the defensive body language of participants and the types of questions they asked. Team members observed how there were clear differences between the interest non-Indigenous participants displayed when talking about Aboriginal and Torres Strait Islander peoples and a clear discomfort when they were asked to reflect on their own position in relation to Indigenous people. We noted that during these occasions some participants crossed their arms, two wrote notes to each other across the table, and many participants showed discomfort. When the lead facilitator raised this to participants during the sessions, some expressed their dislike and discomfort at having to talk about themselves. A couple were clearly unhappy and upset. We found this interesting as we were asking participants to reflect and talk about how they interpret and understand themselves in relation to Indigenous people and race, privilege, and power.This supports the work of DiAngelo who explains that facilitators can spend a lot of time trying to manage the behaviour of participants. Similarly, Castagno identifies that sometimes facilitators of training might overly focus on keeping participants happy, and in doing so, derail the hard conversations needed. We did not do either. Instead, we worked to manage the behaviours expressed and draw out what was happening to break the attempts to silence racial discussions. We reiterated and worked hard to reassure participants that we were in a “safe space” and that while such discussions may be difficult, they were worth working through on an individual and collective level.During the workshop, numerous emotions surfaced, people laughed at Indigenous humour and cried at what they witnessed as losses. They also expressed anger, defensiveness, and denial. Some participants revelled in hearing answers to questions that they had long wondered about; some openly discussed how they thought they had discovered a distant Aboriginal relative. Many questions surfaced, such as why hadn’t they ever been told this version of Australian history? Why were we focusing on them and not Aboriginal people? How could they be racist when they had an Aboriginal friend or an Aboriginal relative?Some said they felt “guilty” about what had happened in the past. Others said they were not personally responsible or responsible for the actions of their ancestors, questioning why they needed to go over such history in the first place? Inter-woven within participants’ revelations were issues of racism, power, whiteness, and white privilege. Many participants took a defensive stance to protect their white privilege (DiAngelo). As we worked through these issues, several participants started to see their own positionality and shared this with the group. Clearly, the revelation of whiteness as a racial construct was a turning point for some. The language in the group also changed for some participants as revelations emerged through the interrogation and unpacking of stories of racism. Bargallie’s work exploring racism in the workplace, explains that “racism”, as both a word and theme, is primarily absent in conversations amongst non-Indigenous colleagues. Despite its entrenchment in the dialogue, it is rarely, if ever addressed. In fact, for many non-Indigenous people, the fear of being accused of racism is worse than the act of racism itself (Ahmed; Bargallie). We have seen this play out within the media, sport, news bulletins, and more. Lentin describes the act of denying racism despite its existence in full sight as “not racism”, arguing that its very denial is “a form of racist violence” (406).Through enhancing racial literacy, Bargallie asserts that people gain a better understanding of “what racism is, what racism is not and how race works” (258). Such revelations can work towards dismantling racism in workplaces. Individual and structural racism go hand-in-glove and must be examined and addressed together. This is what we wanted to work towards within the cultural competency course. Through the use of critical Indigenous studies and critical race theory we situated race, and not cultural difference, as central, providing participants with a racial literacy that could be used as a tool to challenge and dismantle racism in the workplace.Revelations in the Participant Evaluations?The evaluations revealed that our intention to disrupt the status quo in cultural competency training was achieved. Some of the discussions were difficult and this was reflected in the feedback. It was valuable to learn that numerous participants wanted to do more through group work, conversations, and problem resolution, along with having extra reading materials. This prompted our decision to include extra links to resource learning materials through the course’s online site. We also opted to provide all participants with a copy of the book Indigenous Australia for Dummies (Behrendt). The cost of the book was built into the course and future participants were thankful for this combination of resources.One unexpected concern raised by participants was that the course should not be “that hard”, and that we should “dumb down” the course. We were astounded considering that many participants were academics and we were confident that facilitators of other mandatory workplace training, for example, staff Equal Employment Opportunity (EEO), Fire Safety, Risk Management, Occupational Health and Safety, Discrimination and more, weren’t asked to “dumb down” their content. We explained to the participants what content we had been asked to deliver and knew their responses demonstrated white fragility. We were not prepared to adjust the course and dumb it down for white understandings and comfortabilities (Leonardo and Porter).Comments that were expected included that the facilitators were “passionate”, “articulate”, demonstrated “knowledge” and effectively “dealt with issues”. A couple of the participants wrote that the facilitators were “aggressive” or “angry”. This however is not new for us, or new to other Aboriginal women. We know Aboriginal women are often seen as “aggressive” and “angry”, when non-Indigenous women might be described as “passionate” or “assertive” for saying exactly the same thing. The work of Aileen Moreton-Robinson in Australia, and the works of numerous other Aboriginal women provide evidence of this form of racism (Fredericks and White; Bargallie; Bond). Internationally, other Indigenous women and women of colour document the same experiences (Lorde). Participants’ assessment of the facilitators is consistent with the racism expressed through racial microaggression outside of the university, and in other organisations. This is despite working in the higher education sector, which is normally perceived as a more knowledgeable and informed environment. Needless to say, we did not take on these comments.The evaluations did offer us the opportunity to adjust the course and make it stronger before it was offered across the university where we received further evaluation of its success. Despite this, the university decided to withdraw and reallocate the money to the development of a diversity training course that would cover all equity groups. This meant that Aboriginal and Torres Strait Islander peoples would be covered along with sexual diversity, gender, disability, and people from non-English speaking backgrounds. The content focused on Aboriginal and Torres Strait Islander peoples was reduced to one hour of the total course. Including Aboriginal and Torres Strait Islander peoples in this way is not based on evidence and works to minimise Indigenous Australians and their inherent rights and sovereignty to just another “equity group”. Conclusion We set out to develop and deliver a cross-cultural course that was based on evidence and a foundation of 40 plus years’ experience in delivering such training. In addition, we sought a program that would align with the university’s Reconciliation Action Plan and the directions being undertaken in the sector and by Universities Australia. Through engaging participants in a process of critical thinking centring on race, we developed a training program that successfully fostered self-reflection and brought about revelations of whiteness.Focusing on cultural differences has proven ineffective to the work needed to improve the lives of Indigenous Australian peoples. Recognising this, our discussions with participants directly challenged racist and negative stereotypes, individual and structural racism, prejudices, and white privilege. By centring race over cultural difference in cultural competency training, we worked to foster self-revelation within participants to transform inequitable power differentials in their work with Indigenous peoples and organisations. The institution’s disbandment and defunding of the program however is a telling revelation in and of itself, highlighting the continuing struggle and importance of placing additional pressure on persons, institutions, and organisations to implement meaningful structural change. ReferencesAhmed, Sara. On Being Included: Racism and Diversity in Institutional Life. Duke University Press, 2012.Anderson, Ian. “Advancing Indigenous Health through Medical Education”. 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In Cultural Competence and the Higher Education Sector: Perspectives, Policies and Practice, eds. Jack Frawley, Gabrielle Russell, and Juanita Sherwood, Springer Publications, 295-308. <https://link.springer.com/book/10.1007%2F978-981-15-5362-2>.Fredericks, Bronwyn, and Debbie Bargallie. “‘Which Way? Talking Culture, Talking Race’: Unpacking an Indigenous Cultural Competency Course”. International Journal of Critical Indigenous Studies 9.1 (2016): 1-14.Fredericks, Bronwyn, and Marlene Thompson. “Collaborative Voices: Ongoing Reflections on Cultural Competency and the Health Care of Australian Indigenous People”. Journal of Australian Indigenous Issues 13.3 (2010): 10-20.Fredericks, Bronwyn, and Nereda White. “Using Bridges Made by Others as Scaffolding and Establishing Footings for Those That Follow: Indigenous Women in the Academy”. Australian Journal of Education 62.3 (2018): 243–255.Gorringe, Scott, Joe Ross, and Cressida Fforde. Will the Real Aborigine Please Stand Up? 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Archer. “Surveys of Cultural Competency in Health Professional Education: A Literature Review”. Journal of Emergency Primary Health Care 6.2 (2008): 17.Universities Australia. National Best Practice Framework for Indigenous Cultural Competency in Australian Universities. Universities Australia, 2011. <http://www.universitiesaustralia.edu.au/lightbox/1312>.University of Sydney. National Centre for Cultural Competence, 2016. <http://sydney.edu.au/nccc/>.Westwood, Barbara, and Geoff Westwood. “Aboriginal Cultural Awareness Training: Policy v. Accountability – Failure in Reality”. Australian Health Review 34 (2010): 423-429.Young, Susan. “Not Because It’s a Bloody Black Issue! Problematics of Cross Cultural Training”. In Unmasking Whiteness: Race Relations and Reconciliation, ed. Belinda McKay, 204-219. Queensland Studies Centre, University of Queensland Press, 1999.

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Abstract:

IntroductionTasmania hangs from the map of Australia like a drop in freefall from the substance of the mainland. Often the whole state is mislaid from Australian maps and logos (Reddit). Tasmania has, at least since federation, been considered peripheral—a region seen as isolated, a ‘problem’ economically, politically, and culturally. However, Tasmania not only cleaves to the ‘north island’ of Australia but is also subject to the gravitational pull of an even greater land mass—Antarctica. In this article, we upturn the political conventions of map-making that place both Antarctica and Tasmania in obscure positions at the base of the globe. We show how a changing global climate re-frames Antarctica and the Southern Ocean as key drivers of worldwide environmental shifts. The liquid and solid water between Tasmania and Antarctica is revealed not as a hom*ogenous barrier, but as a dynamic and relational medium linking the Tasmanian archipelago with Antarctica. When Antarctica becomes the focus, the script is flipped: Tasmania is no longer on the edge, but core to a network of gateways into the southern land. The state’s capital of Hobart can from this perspective be understood as an “Antarctic city”, central to the geopolitics, economy, and culture of the frozen continent (Salazar et al.). Viewed from the south, we argue, Tasmania is not a problem, but an opportunity for a form of ecological, cultural, economic, and political sustainability that opens up the southern continent to science, discovery, and imagination.A Centre at the End of the Earth? Tasmania as ParadoxThe islands of Tasmania owe their existence to climate change: a period of warming at the end of the last ice age melted the vast sheets of ice covering the polar regions, causing sea levels to rise by more than one hundred metres (Tasmanian Climate Change Office 8). Eleven thousand years ago, Aboriginal people would have witnessed the rise of what is now called Bass Strait, turning what had been a peninsula into an archipelago, with the large island of Tasmania at its heart. The heterogeneous practices and narratives of Tasmanian regional identity have been shaped by the geography of these islands, and their connection to the Southern Ocean and Antarctica. Regions, understood as “centres of collective consciousness and sociospatial identities” (Paasi 241) are constantly reproduced and reimagined through place-based social practices and communications over time. As we will show, diverse and contradictory narratives of Tasmanian regionality often co-exist, interacting in complex and sometimes complementary ways. Ecocritical literary scholar C.A. Cranston considers duality to be embedded in the textual construction of Tasmania, writing “it was hell, it was heaven, it was penal, it was paradise” (29). Tasmania is multiply polarised: it is both isolated and connected; close and far away; rich in resources and poor in capital; the socially conservative birthplace of radical green politics (Hay 60). The weather, as if sensing the fine balance of these paradoxes, blows hot and cold at a moment’s notice.Tasmania has wielded extraordinary political influence at times in its history—notably during the settlement of Melbourne in 1835 (Boyce), and during protests against damming the Franklin River in the early 1980s (Mercer). However, twentieth-century historical and political narratives of Tasmania portray the Bass Strait as a barrier, isolating Tasmanians from the mainland (Harwood 61). Sir Bede Callaghan, who headed one of a long line of federal government inquiries into “the Tasmanian problem” (Harwood 106), was clear that Tasmania was a victim of its own geography:the major disability facing the people of Tasmania (although some residents may consider it an advantage) is that Tasmania is an island. Separation from the mainland adversely affects the economy of the State and the general welfare of the people in many ways. (Callaghan 3)This perspective may stem from the fact that Tasmania has maintained the lowest Gross Domestic Product per capita of all states since federation (Bureau of Infrastructure Transport and Regional Economics 9). Socially, economically, and culturally, Tasmania consistently ranks among the worst regions of Australia. Statistical comparisons with other parts of Australia reveal the population’s high unemployment, low wages, poor educational outcomes, and bad health (West 31). The state’s remoteness and isolation from the mainland states and its reliance on federal income have contributed to the whole of Tasmania, including Hobart, being classified as ‘regional’ by the Australian government, in an attempt to promote immigration and economic growth (Department of Infrastructure and Regional Development 1). Tasmania is indeed both regional and remote. However, in this article we argue that, while regionality may be cast as a disadvantage, the island’s remote location is also an asset, particularly when viewed from a far southern perspective (Image 1).Image 1: Antarctica (Orthographic Projection). Image Credit: Wikimedia Commons, Modified Shading of Tasmania and Addition of Captions by H. Nielsen.Connecting Oceans/Collapsing DistanceTasmania and Antarctica have been closely linked in the past—the future archipelago formed a land bridge between Antarctica and northern land masses until the opening of the Tasman Seaway some 32 million years ago (Barker et al.). The far south was tangible to the Indigenous people of the island in the weather blowing in from the Southern Ocean, while the southern lights, or “nuyina”, formed a visible connection (Australia’s new icebreaker vessel is named RSV Nuyina in recognition of these links). In the contemporary Australian imagination, Tasmania tends to be defined by its marine boundaries, the sea around the islands represented as flat, empty space against which to highlight the topography of its landscape and the isolation of its position (Davies et al.). A more relational geographic perspective illuminates the “power of cross-currents and connections” (Stratford et al. 273) across these seascapes. The sea country of Tasmania is multiple and heterogeneous: the rough, shallow waters of the island-scattered Bass Strait flow into the Tasman Sea, where the continental shelf descends toward an abyssal plain studded with volcanic seamounts. To the south, the Southern Ocean provides nutrient-rich upwellings that attract fish and cetacean populations. Tasmania’s coast is a dynamic, liminal space, moving and changing in response to the global currents that are driven by the shifting, calving and melting ice shelves and sheets in Antarctica.Oceans have long been a medium of connection between Tasmania and Antarctica. In the early colonial period, when the seas were the major thoroughfares of the world and inland travel was treacherous and slow, Tasmania’s connection with the Southern Ocean made it a valuable hub for exploration and exploitation of the south. Between 1642 and 1900, early European explorers were followed by British penal colonists, convicts, sealers, and whalers (Kriwoken and Williamson 93). Tasmania was well known to polar explorers, with expeditions led by Jules Dumont d’Urville, James Clark Ross, Roald Amundsen, and Douglas Mawson all transiting through the port of Hobart. Now that the city is no longer a whaling hub, growing populations of cetaceans continue to migrate past the islands on their annual journeys from the tropics, across the Sub-Antarctic Front and Antarctic circumpolar current, and into the south polar region, while southern species such as leopard seals are occasionally seen around Tasmania (Tasmania Parks and Wildlife). Although the water surrounding Tasmania and Antarctica is at times hom*ogenised as a ‘barrier’, rendering these places isolated, the bodies of water that surround both are in fact permeable, and regularly crossed by both humans and marine species. The waters are diverse in their physical characteristics, underlying topography, sea life, and relationships, and serve to connect many different ocean regions, ecosystems, and weather patterns.Views from the Far SouthWhen considered in terms of its relative proximity to Antarctic, rather than its distance from Australia’s political and economic centres, Tasmania’s identity undergoes a significant shift. A sign at co*ckle Creek, in the state’s far south, reminds visitors that they are closer to Antarctica than to Cairns, invoking a discourse of connectedness that collapses the standard ten-day ship voyage to Australia’s closest Antarctic station into a unit comparable with the routinely scheduled 5.5 hour flight to North Queensland. Hobart is the logistical hub for the Australian Antarctic Division and the French Institut Polaire Francais (IPEV), and has hosted Antarctic vessels belonging to the USA, South Korea, and Japan in recent years. From a far southern perspective, Hobart is not a regional Australian capital but a global polar hub. This alters the city’s geographic imaginary not only in a latitudinal sense—from “top down” to “bottom up”—but also a longitudinal one. Via its southward connection to Antarctica, Hobart is also connected east and west to four other recognized gateways: Cape Town in South Africa, Christchurch in New Zealand; Punta Arenas in Chile; and Ushuaia in Argentina (Image 2). The latter cities are considered small by international standards, but play an outsized role in relation to Antarctica.Image 2: H. Nielsen with a Sign Announcing Distances between Antarctic ‘Gateway’ Cities and Antarctica, Ushuaia, Argentina, 2018. Image Credit: Nicki D'Souza.These five cities form what might be called—to adapt geographer Klaus Dodds’ term—a ‘Southern Rim’ around the South Polar region (Dodds Geopolitics). They exist in ambiguous relationship to each other. Although the five cities signed a Statement of Intent in 2009 committing them to collaboration, they continue to compete vigorously for northern hemisphere traffic and the brand identity of the most prominent global gateway. A state government brochure spruiks Hobart, for example, as the “perfect Antarctic Gateway” emphasising its uniqueness and “natural advantages” in this regard (Tasmanian Government, 2016). In practice, the cities are automatically differentiated by their geographic position with respect to Antarctica. Although the ‘ice continent’ is often conceived as one entity, it too has regions, in both scientific and geographical senses (Terauds and Lee; Antonello). Hobart provides access to parts of East Antarctica, where the Australian, French, Japanese, and Chinese programs (among others) have bases; Cape Town is a useful access point for Europeans going to Dronning Maud Land; Christchurch is closest to the Ross Sea region, site of the largest US base; and Punta Arenas and Ushuaia neighbour the Antarctic Peninsula, home to numerous bases as well as a thriving tourist industry.The Antarctic sector is important to the Tasmanian economy, contributing $186 million (AUD) in 2017/18 (Wells; Gutwein; Tasmanian Polar Network). Unsurprisingly, Tasmania’s gateway brand has been actively promoted, with the 2016 Australian Antarctic Strategy and 20 Year Action Plan foregrounding the need to “Build Tasmania’s status as the premier East Antarctic Gateway for science and operations” and the state government releasing a “Tasmanian Antarctic Gateway Strategy” in 2017. The Chinese Antarctic program has been a particular focus: a Memorandum of Understanding focussed on Australia and China’s Antarctic relations includes a “commitment to utilise Australia, including Tasmania, as an Antarctic ‘gateway’.” (Australian Antarctic Division). These efforts towards a closer relationship with China have more recently come under attack as part of a questioning of China’s interests in the region (without, it should be noted, a concomitant questioning of Australia’s own considerable interests) (Baker 9). In these exchanges, a global power and a state of Australia generally classed as regional and peripheral are brought into direct contact via the even more remote Antarctic region. This connection was particularly visible when Chinese President Xi Jinping travelled to Hobart in 2014, in a visit described as both “strategic” and “incongruous” (Burden). There can be differences in how this relationship is narrated to domestic and international audiences, with issues of sovereignty and international cooperation variously foregrounded, laying the ground for what Dodds terms “awkward Antarctic nationalism” (1).Territory and ConnectionsThe awkwardness comes to a head in Tasmania, where domestic and international views of connections with the far south collide. Australia claims sovereignty over almost 6 million km2 of the Antarctic continent—a claim that in area is “roughly the size of mainland Australia minus Queensland” (Bergin). This geopolitical context elevates the importance of a regional part of Australia: the claims to Antarctic territory (which are recognised only by four other claimant nations) are performed not only in Antarctic localities, where they are made visible “with paraphernalia such as maps, flags, and plaques” (Salazar 55), but also in Tasmania, particularly in Hobart and surrounds. A replica of Mawson’s Huts in central Hobart makes Australia’s historic territorial interests in Antarctica visible an urban setting, foregrounding the figure of Douglas Mawson, the well-known Australian scientist and explorer who led the expeditions that proclaimed Australia’s sovereignty in the region of the continent roughly to its south (Leane et al.). Tasmania is caught in a balancing act, as it fosters international Antarctic connections (such hosting vessels from other national programs), while also playing a key role in administering what is domestically referred to as the Australian Antarctic Territory. The rhetoric of protection can offer common ground: island studies scholar Godfrey Baldacchino notes that as island narratives have moved “away from the perspective of the ‘explorer-discoverer-colonist’” they have been replaced by “the perspective of the ‘custodian-steward-environmentalist’” (49), but reminds readers that a colonising disposition still lurks beneath the surface. It must be remembered that terms such as “stewardship” and “leadership” can undertake sovereignty labour (Dodds “Awkward”), and that Tasmania’s Antarctic connections can be mobilised for a range of purposes. When Environment Minister Greg Hunt proclaimed at a press conference that: “Hobart is the gateway to the Antarctic for the future” (26 Apr. 2016), the remark had meaning within discourses of both sovereignty and economics. Tasmania’s capital was leveraged as a way to position Australia as a leader in the Antarctic arena.From ‘Gateway’ to ‘Antarctic City’While discussion of Antarctic ‘Gateway’ Cities often focuses on the economic and logistical benefit of their Antarctic connections, Hobart’s “gateway” identity, like those of its counterparts, stretches well beyond this, encompassing geological, climatic, historical, political, cultural and scientific links. Even the southerly wind, according to cartoonist Jon Kudelka, “has penguins in it” (Image 3). Hobart residents feel a high level of connection to Antarctica. In 2018, a survey of 300 randomly selected residents of Greater Hobart was conducted under the umbrella of the “Antarctic Cities” Australian Research Council Linkage Project led by Assoc. Prof. Juan Francisco Salazar (and involving all three present authors). Fourteen percent of respondents reported having been involved in an economic activity related to Antarctica, and 36% had attended a cultural event about Antarctica. Connections between the southern continent and Hobart were recognised as important: 71.9% agreed that “people in my city can influence the cultural meanings that shape our relationship to Antarctica”, while 90% agreed or strongly agreed that Hobart should play a significant role as a custodian of Antarctica’s future, and 88.4% agreed or strongly agreed that: “How we treat Antarctica is a test of our approach to ecological sustainability.” Image 3: “The Southerly” Demonstrates How Weather Connects Hobart and Antarctica. Image Credit: Jon Kudelka, Reproduced with Permission.Hobart, like the other gateways, activates these connections in its conscious place-branding. The city is particularly strong as a centre of Antarctic research: signs at the cruise-ship terminal on the waterfront claim that “There are more Antarctic scientists based in Hobart […] than at any other one place on earth, making Hobart a globally significant contributor to our understanding of Antarctica and the Southern Ocean.” Researchers are based at the Institute for Marine and Antarctic Studies (IMAS), the Commonwealth Scientific and Industrial Research Organisation (CSIRO), and the Australian Antarctic Division (AAD), with several working between institutions. Many Antarctic researchers located elsewhere in the world also have a connection with the place through affiliations and collaborations, leading journalist Jo Chandler to assert that “the breadth and depth of Hobart’s knowledge of ice, water, and the life forms they nurture […] is arguably unrivalled anywhere in the world” (86).Hobart also plays a significant role in Antarctica’s governance, as the site of the secretariats for the Commission for the Conservation of Antarctic Marine Living Resources (CCAMLR) and the Agreement on the Conservation of Albatrosses and Petrels (ACAP), and as host of the Antarctic Consultative Treaty Meetings on more than one occasion (1986, 2012). The cultural domain is active, with Tasmanian Museum and Art Gallery (TMAG) featuring a permanent exhibit, “Islands to Ice”, emphasising the ocean as connecting the two places; the Mawson’s Huts Replica Museum aiming (among other things) to “highlight Hobart as the gateway to the Antarctic continent for the Asia Pacific region”; and a biennial Australian Antarctic Festival drawing over twenty thousand visitors, about a sixth of them from interstate or overseas (Hingley). Antarctic links are evident in the city’s natural and built environment: the dolerite columns of Mt Wellington, the statue of the Tasmanian Antarctic explorer Louis Bernacchi on the waterfront, and the wharfs that regularly accommodate icebreakers such as the Aurora Australis and the Astrolabe. Antarctica is figured as a southern neighbour; as historian Tom Griffiths puts it, Tasmanians “grow up with Antarctica breathing down their necks” (5). As an Antarctic City, Hobart mediates access to Antarctica both physically and in the cultural imaginary.Perhaps in recognition of the diverse ways in which a region or a city might be connected to Antarctica, researchers have recently been suggesting critical approaches to the ‘gateway’ label. C. Michael Hall points to a fuzziness in the way the term is applied, noting that it has drifted from its initial definition (drawn from economic geography) as denoting an access and supply point to a hinterland that produces a certain level of economic benefits. While Hall looks to keep the term robustly defined to avoid empty “local boosterism” (272–73), Gabriela Roldan aims to move the concept “beyond its function as an entry and exit door”, arguing that, among other things, the local community should be actively engaged in the Antarctic region (57). Leane, examining the representation of Hobart as a gateway in historical travel texts, concurs that “ingress and egress” are insufficient descriptors of Tasmania’s relationship with Antarctica, suggesting that at least discursively the island is positioned as “part of an Antarctic rim, itself sharing qualities of the polar region” (45). The ARC Linkage Project described above, supported by the Hobart City Council, the State Government and the University of Tasmania, as well as other national and international partners, aims to foster the idea of the Hobart and its counterparts as ‘Antarctic cities’ whose citizens act as custodians for the South Polar region, with a genuine concern for and investment in its future.Near and Far: Local Perspectives A changing climate may once again herald a shift in the identity of the Tasmanian islands. Recognition of the central role of Antarctica in regulating the global climate has generated scientific and political re-evaluation of the region. Antarctica is not only the planet’s largest heat sink but is the engine of global water currents and wind patterns that drive weather patterns and biodiversity across the world (Convey et al. 543). For example, Tas van Ommen’s research into Antarctic glaciology shows the tangible connection between increased snowfall in coastal East Antarctica and patterns of drought southwest Western Australia (van Ommen and Morgan). Hobart has become a global centre of marine and Antarctic science, bringing investment and development to the city. As the global climate heats up, Tasmania—thanks to its low latitude and southerly weather patterns—is one of the few regions in Australia likely to remain temperate. This is already leading to migration from the mainland that is impacting house prices and rental availability (Johnston; Landers 1). The region’s future is therefore closely entangled with its proximity to the far south. Salazar writes that “we cannot continue to think of Antarctica as the end of the Earth” (67). Shifting Antarctica into focus also brings Tasmania in from the margins. As an Antarctic city, Hobart assumes a privileged positioned on the global stage. This allows the city to present itself as central to international research efforts—in contrast to domestic views of the place as a small regional capital. The city inhabits dual identities; it is both on the periphery of Australian concerns and at the centre of Antarctic activity. Tasmania, then, is not in freefall, but rather at the forefront of a push to recognise Antarctica as entangled with its neighbours to the north.AcknowledgementsThis work was supported by the Australian Research Council under LP160100210.ReferencesAntonello, Alessandro. “Finding Place in Antarctica.” Antarctica and the Humanities. Eds. Peder Roberts, Lize-Marie van der Watt, and Adrian Howkins. London: Palgrave Macmillan, 2016. 181–204.Australian Government. 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This paper examines the manner of reconciling the concepts of Public Administration as a discipline and the contemporary actual realities in the Philippines as carried out by the National College of Public Administration and Governance of the University of the Philippines, Diliman. As a center of academic excellence and bestowed with the mandate of advancing nation-building into which utterance of identity is an implicit element, there is no other academic institution where expectations to advance the development of a ‘grounded’ public policy is so high than the said College. The paper studies the research direction of the NCPAG vis a vis its role in strengthening Philippine Public Administration both as discipline and praxis by developing approaches that are culturally and socially grounded in the Philippine society. The paper however limited its scrutiny to the epistemological element of the researches. Through content analysis, the article analyzed the theoretical frameworks used in the dissertations covered by the study and tries to answer the question of whether or not there is an attempt to develop, let alone to utilize in its analysis of phenomena, an indigenous theory. Initial results of the study had been juxtaposed to the academic orientation, research interests, and history of the College. References Books: Abueva, J. (1995). The Presidency and the Nation-State. In P. Tapales & N. Pilar (Eds.), Public Administration by the Year 2000: Looking Back into the Future (pp. 575-582). Quezon City: College of Public Administration. Abueva, J. (2007). From IPA to NCPAG: Some Reflections. In C. Alfiler (Ed.), Public Administration plus Governance: Assessing the Past, Addressing the Future (pp. 675-684). Quezon City: National College of Public Administration and Governance. Alfiler, M. C. Public Administration plus Governance: Assessing the Past, Addressing the Future. Quezon City: National College of Public Administration and Governance, 2007. Cariño, L. (2007). Traditional Public Administration to Governance: Research in NCPAG, 1952-2002, Public Administration plusGovernance: Assessing the Past, Addressing the Future (pp. 685-706). Quezon City:National College of Public Administration and Governance. Reyes, D. (1995). Life Begins at Forty: An Inquiry on Administrative Theory in the Philippines and the Structure of Scientific Revelations. In P. Tapales & N. Pilar (Eds.), Public Administration by the Year 2000: Looking Back into the Future (pp. 18-73). Quezon City: College of Public Administration. Tapales, P. & Pilar, N. Public Administration by the Year 2000: Looking Back into the Future. Quezon City: National College of Public Administration and Governance, 1995. Journal Articles: Abueva, J. “Ideals and Practice in the Study of Public Administration and Governance.” Philippine Journal of Public Administration 52, nos. 2-4 (2008): 119-138. Brillantes, A. & Fernandez, M. “Is There a Philippine Public Administration? Or Better Still For Whom is Philippines Public Administration.” Philipine Journal of Public Administration 52, nos. 2-4 (2008). Brillantes, A. & Fernandez, M. “Theory and Practice of Public Administration in the Philippines: Concerns for an Identity Crisis.” Asian Journal of Political Science 21, no. 1 (2013): 80-101. Brillantes, A. & Montes, R. “Federalism: Logical Step After Devolution?” Philippine Journal of Public Administration 51, nos. 1-4 (2007): 1-32. Cariño, L. “From Traditional Public Administration to Governance Tradition.” Philippine Journal of Public Administration 50, nos. 1-4 (2006): 1-22. Cariño, L. “Is There a Philippine Public Administration?” Philippine Journal of Public Administration 30, no. 4 (1986): 375-381. Corpuz, O. “Is There a Philippine Public Administration?” Philippine Journal of Public Administration 30, no. 4 (1986): 368-374. Dela Cruz, L. “Research Directions and Trajectory of the University of the Philippines Asian Center.” Scientia 4, no. 1 (2015): 48-67. Dela Cruz, L. “The Language of the Self: A Critical Assessment of Filipino Philosophy Theses Exploring the Filipino Self in University of the Philippines – Diliman.” Scientia 4, no. 2 (2015): 144-171. De Guzman, R. “Is There a Philippine Public Administration?.” Philippine Journal of Public Administration, 30, no. 4 (1986): 375-382. Domingo, M.O. “Indigenous Leadership and Governance.” Philippine Journal of Public Administration 48, nos. 1 & 2 (2004): 1-32. Englehart, J. “The Marriage between Theory and Practice.” Public Administration Review 61, no. 3 (2001): 371-374. Haque, M. S. “Theory and Practice of Public Administration in Southeast Asia: Traditions, Directions, and Impacts.” International Journal of Public Administration 30 (2007): 1297-1326. Hodder, R. “The Philippine Legislature and Social Relationships: Toward the Formalization of the Polity?” Philippine Studies 53, no. 4 (2005): 563-598. Llanera, T. “Ethnocentrism: Lessons from Richard Rorty to Randy David.” Philippine Sociological Review 65, special issue (2017): 135-149. Nolasco, L. “Prehistory and Early History of Philippine Public Administration.” Philippine Journal of Public Administration 55, nos. 1 & 2 (2011): 21-46. Penalosa, M. C. “Administrative Reform and Indigenization.” Philippine Journal of Public Administration 58, no. 2 (2014): 195-223. Rafael, E. “Philippine Problems are Problems of Modernity, Not of Transition.” Philippine Sociological Review 65, special issue (2017): 151-175. Reyes, D. “The Identity Crisis in Philippine Public Administration Revisited.” Philippine Journal of Public Administration 23, no. 1 (1979): 1-19. Reyes, D. “The Study of Administrative History: Philippine Public Administration as an Historical Discipline.” Philippine Journal of Public Administration 52, nos. 2-4 (2008). Ricote, E. “Philippine Public Administration as a Field of Study, Enduring and Emerging Areas, Challenges, and Prospects.” Philippine Journal of Public Administration 52, nos. 2- 4 (2008): 167-194. Sampaco-Baddiri, M. “New Institutionalism and Public Administration.” Philippine Journal of Public Administration 55, nos. 1 & 2 (2011): 1-20. Sto. Tomas, P. & Mangahas, J. “Public Administration and Governance.” Philippine Journal of Public Administration 50, nos. 1-4 (2006): 54-89. Thornhill, C. & Van Dijk, G. “Public Administration Theory: Justification for Conceptualisation.” Journal of Public Administration 45, no. 1.1 (2010): 95-110. Wilson, W. “The Study of Administration.” Political Science Quarterly 2, no. 2 (1887): 197-222. Unpublished Dissertations Abad-Sarmiento, L. (2005). An Assessment of the Administrative Capability of Local Governments in the National Capital Region in Implementing the Gender Mainstreaming Policy. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Abdon Jr., N.B. (November 2000). Religiosity, Ethical Practice and Performance: The Case of the Bureau of Internal Revenue. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Abdulrachman, S.M. (June 1991). The Relationship Between Religious Beliefs and Public Responsibility: A Case Study Among Maranao Muslim Public Administrators. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Alcid, R.G. (March 2007). E-Governance Perspective to Strengthen the Policy and Institutional Framework for ICT in the Philippines. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Ati, M.P. (December 1996). Process Assessment of the Implementation of Integrated Approach to Local Development Management in Davao City. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Bajao, A.R. (2009). Philippine Counterinsurgency Programs From Marcos to Arroyo: A Study in National Security Administration. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Bambalan, G.C. (2005). Elements of Sustainability in Philippine Forest Governance: An Analysis of the Community-Based Forest Management and Integrated Forest Management Programs in Isabela, Quirino, Aurora, and Negros Oriental, Philippines. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Bautista-Cruz, C. (April 2007). Strengthening Institutional Capacity for Disaster Reduction: The Cases of the Local Governments of Marikina, Pasig, and Pateros. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Boceta, N.M. (March 2003). The Development and Regulatory Functions of the Philippine Coconut Authority: 1973-2000. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Buendia, E.E. (May 2001). Democratizing Governance in the Philippines: Redefining and measuring the State of People’s Participation in Governance. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Caraan, H.S. (2010). Public-Private Sectors’ Role in the Clean Administration of Labor Justice: Transforming a Problematic Confluence into a Confluent Solution. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Carmona, C.V. (November 2003). Judicial Review of Economic Policies: Implications on Policymaking and Implementation. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Clavejo, L.A. (April 2008). Strategies for Crisis Management: The Responses of China to SARS and Avian Flu Pandemics and Lessons for the Philippines. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Co, E.A. (July 1997). Management Policy Formulation: The Generics Act of 1988. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Cuaresma, J.C. (April 13, 2008). Institutionalization of Geographic Information System for RPTA in Seven Philippine Local Government Units: Enabling and Hindering Factors. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Dimzon, C. (October 2003). An Evaluation of the Pre-Departure Orientation Seminar Program for Women Overseas Household Workers: Implications for Good Governance. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. De Vera III, J.E. (July 1999). A Comparative Study of Policy Decisions on Population Management in Selected Local Legislative Bodies in Pangasinan and Cebu. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Domingo, M.Z. (November 2004). Good Governance of Civil Society Organizations and the Role of Boards. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Domingo-Almase, A.D. (March 2007). A Saga of Administrative Thought in Presidential Rhetoric: An Analysis of the State of the Nation Addresses and Speeches of Philippine Presidents, 1935-2006. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Doncillo, H.V. (June 1995). Beneficiaries and Business Sector Participation, Administrative Capability and Effectiveness of a Solid Waste Management Service: The Case of Metro Cebu. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Dumrichob, S. (June 1990). An Assessment of a Rural Employment Program: The Case of the Program for Rural Employment Creation in Thailand. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Eclar, V.B. (April 1991). Analysis of Policies and Factors Affecting Successful Commercialization of Technologies. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Espinoza-Abadingo, L.M. (April 1990).The Administration of Elections in the Philippines: A Study of the Commission on Elections. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Ferrer, O.P. (May 2006). Community Governance: Understanding Community Processes and Initiatives. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Francisco, R.B. (March 2007). Sound Development Management in Urban Renewal and Slum Upgrading: The Case of National Government Center (West Side) Commonwealth Avenue, Quezon City. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Gaffud, R.B. (March 1995). Strengthening Market Leverage of People’s Enterprise and Promoting Self-Reliance: A Framework for Collaboration Between Cooperatives and Local Governments. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Garcia, J.G. (November 1995). Academe-Based Extension Services for Agricultural Development: A Study of the Administration of a Comprehensive UPLB Project. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Garcia Jr., M.F. (November 1995). Reorganization of the Philippine Fisheries Research System. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Gavino Jr., J.C. (1992). A Critical Study of the Regulation of the Telephone Utility: Some Options for Policy Development. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Genato-Rebullida, M.G. (April 1990). Church Development Perspective: Policy Formulation and Implementation. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Gonzales, B.V. (2009). The Development Promise of Corporate Social Responsibility in Education: Energy Development Corporation’s Role in Improving School Performance. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Gonzales, E. (1972-1990). The Philippine Agrarian Reform Program. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Hofer, D.K. (April 2005). Local Government Unit Bond Flotation for Financing Development in the Philippine Setting: Case Studies and Vital Lessons Learned. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Imdad, M.P. (2010). Dynamics and Perspectives of Aid Management in the Philippines: Achievements, Challenges, and the Way Forward. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Jimenez, G.P. (2005). Selected Credit Programs for Farmer-Based Postharvest Enterprise: An Assessment. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Lamarca, F.J. (April 1992). The Tobacco Contract Growing Project of the National Tobacco Administration in the Province of La Union: An Assessment of Administrative Capability, Participation, Trading Practices and Effectiveness. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Legaspi, P.E. (March 1990). The Genesis, Viability, and Effectiveness of Community Organizations: The Case of Pangasinan Credit Cooperatives. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Legayada, B.L. (October 1992). Career Advancement of Women Managers in the Philippine Bureaucracy: A Case Study of Region VI. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Librea, R.C. (January 2010). Mainstreaming Human Rights-Based Approach in Selected Development and Governance Projects. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Macaayong, H.W. (May 1992). Small and Medium Enterprises Development: A Study on Program Administration and Effectiveness in the Province of Lanao Del Sur. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Mallari, N.H. (1994). Political Economy of Philippine Public Enterprises. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Maxino-Yorobe, G.A. (November 1995). Administrative Factors in Agricultural R and D Projects. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Legaspi, P.E. (March 1990). The Genesis, Viability, and Effectiveness of Community Organizations: The Case of Pangasinan Credit Cooperatives. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Morato, E.A. (2004). Policies and Strategies for Promoting Entrepreneurship and Enterprise Development. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Moreno, F. (2004). Good Governance in Microcredit Strategy for Poverty Reduction: Focus on Western Mindanao. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Navarro, R.L. (April 1992). Public-Private Partnership in Development Administration: GO-NGO Collaboration in Agricultural Development. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Noval, M.G. (June 1994). Measuring and Accessing the Quality, Equity, and Efficiency of Public Hospitals in the Philippines. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Ogbinar, E.R. (1990). The Role of Government in the Development of the Philippine Maritime Industry and in the Promotion of Maritime Safety. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Oguejiofor, A.C. (March 2010). Challenges to Microfinance as a Poverty Reduction Strategy: Evidences from the Philippines. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Ortiz, J.I. (March 2002). Participatory Development Planning; The Bondoc Development Program Experience. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Paje, R.P. (June 1999). Decentralizing Philippine Environment and Natural Resources Management: An Analysis of the Devolution of Community-Based Upland Development Programs. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Panganiban, E.M. (1990). Toward a Democratic-Efficient Framework of Local Government in the Philippines: Some Policy Criteria. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Prakash, I.G. (October 2006). Partnership Among Government, Private Sector and Civil Society: Improving Services in the Philippine Disability Sector. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Pujiono (1998). An Assessment of the Administrative Capability for Disaster Preparedness of Three Municipalities. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Reyes, D. (June 1995). A Search for Heritage. An Analysis of Trends and Content of Public Administration Literature at UP College of Public Administration, 1952-1992. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Reyes, J.C. (June 1993). Administration for Research Utilization: An Analysis of Five Agricultural Research Organizations. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Reyes, R.E. (October 2008). Corporate Governance and the Clark Development Corporation: A Case Study. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Rodriguez, A.S. (October 2001). An Operational Model to Institutionalize Knowledge Management in the Philippines: Lessons on Knowledge Management Practices From the 5th Countryn Programme for Children. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Rodriguez, M.P. (June 2002). A Privatized Corporation in Transition: A Study of Organization Culture. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Salvosa, C.R. (April 2007). Assessing Governance Performance of Selected Primary Cooperatives in the Philippines. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Sam, R.A. (2002). Farmers’ Cooperatives in Conflict-Ridden Areas: The Maguindanao Experience. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Sanchez, L.V. (July 1990). The Katarungang Pambarangay: Justice at the Grassroots. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Serrano, C.P. (June 1990). The Administrative Capacity of the Iskolar ng Bayan Program (STFAP): An early evaluation. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Serrano, D.J. (July 2005). Dynamics of Policy Formulation: The Passage of the Ecological Solid Waste Management Act. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Serrona, E.R. (October 1992). The Northern Samar Integrated Rural Development Project: A Study in Rural Development Administration. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Sonsri, G. (October 2005). Analysis of Motivational Factors Influencing the Performance of Municipal Government Employees in Public Service Delivery: The Case of Two Selected Metropolitan Municipalities in Thailand. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Subramanian, K.S. (June 1993). Financial Administration of Indian Railways. (Unpublished doctoral dissertation). University of the Philippines, Quezon City, Philippines. Swaminathan, R. (July 1993). 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Story spreads out through time the behaviors or bodies – the shapes – a self has been or will be, each replacing the one before. Hence a story has before and after, gain and loss. It goes somewhere…Moreover, shape or body is crucial, not incidental, to story. It carries story; it makes story visible; in a sense it is story. Shape (or visible body) is in space what story is in time. (Bynum, quoted in Garland Thomson, 113-114) Drawing on Goffman’s classic work on stigma, research documenting the existence of discrimination and bias against individuals classified as obese goes back five decades. Since Cahnman published “The Stigma of Obesity” in 1968, other researchers have well documented systematic and growing discrimination against fat people (cf. Puhl and Brownell; Puhl and Heuer; Puhl and Heuer; Fikkan and Rothblum). While weight-based stereotyping has a long history (Chang and Christakis; McPhail; Schwartz), contemporary forms of anti-fat stigma and discrimination must be understood within a social and economic context of neoliberal healthism. By neoliberal healthism (see Crawford; Crawford; Metzel and Kirkland), I refer to the set of discourses that suggest that humans are rational, self-determining actors who independently make their own best choices and are thus responsible for their life chances and health outcomes. In such a context, good health becomes associated with proper selfhood, and there are material and social consequences for those who either unwell or perceived to be unwell. While the greatest impacts of size-based discrimination are structural in nature, the interpersonal impacts are also significant. Because obesity is commonly represented (at least partially) as a matter of behavioral choices in public health, medicine, and media, to “remain fat” is to invite commentary from others that one is lacking in personal responsibility. Guthman suggests that this lack of empathy “also stems from the growing perception that obesity presents a social cost, made all the more tenable when the perception of health responsibility has been reversed from a welfare model” (1126). Because weight loss is commonly held to be a reasonable and feasible goal and yet is nearly impossible to maintain in practice (Kassierer and Angell; Mann et al.; Puhl and Heuer), fat people are “in effect, asked to do the impossible and then socially punished for failing” (Greenhalgh, 474). In this article, I explore how weight-based stigma shaped the decisions of bariatric patients to undergo weight loss surgery. In doing so, I underline the work that emotion does in circulating anti-fat stigma and in creating categories of subjects along lines of health and responsibility. As well, I highlight how fat bodies are lived and negotiated in space and place. I then explore ways in which participants take up notions of time, specifically in regard to risk, in discussing what brought them to the decision to have bariatric surgery. I conclude by arguing that it is a dynamic interaction between the material, social, emotional, discursive, and the temporal that produces not only fat embodiment, but fat subjectivity “failed”, and serves as an impetus for seeking bariatric surgery. Methods This article is based on 30 semi-structured interviews with American bariatric patients. At the time of the interview, individuals were between six months and 12 years out from surgery. After obtaining Intuitional Review Board approval, recruitment occurred through a snowball sample. All interviews were audio-taped with permission and verbatim interview transcripts were analyzed by means of a thematic analysis using Dedoose (www.dedoose.com). All names given in this article are pseudonyms. This work is part of a larger project that includes two additional interviews with bariatric surgeons as well as participant-observation research. Findings Navigating Anti-Fat Stigma In discussing what it was like to be fat, all but one of the individuals I interviewed discussed experiencing substantive size-based stigma and discrimination. Whether through overt comments, indirect remarks, dirty looks, open gawking, or being ignored and unrecognized, participants felt hurt, angry, and shamed by friends, family, coworkers, medical providers, and strangers on the street because of the size of their bodies. Several recalled being bullied and even physically assaulted by peers as children. Many described the experience of being fat or very fat as one of simultaneous hypervisibility and invisibility. One young woman, Kaia, said: “I absolutely was not treated like a person … . I was just like this object to people. Just this big, you know, thing. That’s how people treated me.” Nearly all of my participants described being told repeatedly by others, including medical professionals, that their inability to lose weight was effectively a failure of the will. They found these comments to be particularly hurtful because, in fact, they had spent years, even decades, trying to lose weight only to gain the weight back plus more. Some providers and family members seemed to take up the idea that shame could be a motivating force in weight loss. However, as research by Lewis et al.; Puhl and Huerer; and Schafer and Ferraro has demonstrated, the effect this had was the opposite of what was intended. Specifically, a number of the individuals I spoke with delayed care and avoided health-facilitating behaviors, like exercising, because of the discrimination they had experienced. Instead, they turned to health-harming practices, like crash dieting. Moreover, the internalization of shame and blame served to lower a sense of self-worth for many participants. And despite having a strong sense that something outside of personal behavior explained their escalating body weights, they deeply internalized messages about responsibility and self-control. Danielle, for instance, remarked: “Why could the one thing I want the most be so impossible for me to maintain?” It is important to highlight the work that emotion does in circulating such experiences of anti-fat stigma and discrimination. As Fraser et al have argued in their discussion on fat and emotion, the social, the emotional, and the corporeal cannot be separated. Drawing on Ahmed, they argue that strong emotions are neither interior psychological states that work between individuals nor societal states that impact individuals. Rather, emotions are constitutive of subjects and collectivities, (Ahmed; Fraser et al.). Negative emotions in particular, such as hate and fear, produce categories of people, by defining them as a common threat and, in the process, they also create categories of people who are deemed legitimate and those who are not. Thus following Fraser et al, it is possible to see that anti-fat hatred did more than just negatively impact the individuals I spoke with. Rather, it worked to produce, differentiate, and drive home categories of people along lines of health, weight, risk, responsibility, and worth. In this next section, I examine the ways in which anti-fat discrimination works at the interface of not only the discursive and the emotive, but the material as well. Big Bodies, Small Spaces When they discussed their previous lives as very fat people, all of the participants made reference to a social and built environment mismatch, or in Garland Thomson’s terms, a “misfit”. A misfit occurs “when the environment does not sustain the shape and function of the body that enters it” (594). Whereas the built environment offers a fit for the majority of bodies, Garland Thomson continues, it also creates misfits for minority forms of embodiment. While Garland Thomson’s analysis is particular to disability, I argue that it extends to fat embodiment as well. In discussing what it was like to navigate the world as fat, participants described both the physical and emotional pain entailed in living in bodies that did not fit and frequently discussed the ways in which leaving the house was always a potential, anxiety-filled problem. Whereas all of the participants I interviewed discussed such misfitting, it was notable that participants in the Greater New York City area (70% of the sample) spoke about this topic at length. Specifically, they made frequent and explicit mentions of the particular interface between their fat bodies and the Metropolitan Transit Authority (MTA), and the tightly packed spaces of the city itself. Greater New York City area participants frequently spoke of the shame and physical discomfort in having to stand on public transportation for fear that they would be openly disparaged for “taking up too much room.” Some mentioned that transit seats were made of molded plastic, indicating by design the amount of space a body should occupy. Because they knew they would require more space than what was allotted, these participants only took seats after calculating how crowded the subway or train car was and how crowded it would likely become. Notably, the decision to not take a seat was one that was made at a cost for some of the larger individuals who experienced joint pain. Many participants stated that the densely populated nature of New York City made navigating daily life very challenging. In Talia’s words, “More people, more obstacles, less space.” Participants described always having to be on guard, looking for the next obstacle. As Candice put it: “I would walk in some place and say, ‘Will I be able to fit? Will I be able to manoeuvre around these people and not bump into them?’ I was always self-conscious.” Although participants often found creative solutions to navigating the hostile environment of both the MTA and the city at large, they also identified an increasing sense of isolation that resulted from the physical discomfort and embarrassment of not fitting in. For instance, Talia rarely joined her partner and their friends on outings to movies or the theater because the seats were too tight. Similarly, Decenia would make excuses to her husband in order to avoid social situations outside of the home: “I’d say to my husband, ‘I don’t feel well, you go.’ But you know what? It was because I was afraid not to fit, you know?” The anticipatory scrutinizing described by these participants, and the anxieties it produced, echoes Kirkland’s contention that fat individuals use the technique of ‘scanning’ in order to navigate and manage hostile social and built environments. Scanning, she states, involves both literally rapidly looking over situations and places to determine accessibility, as well as a learned assessment and observation technique that allows fat people to anticipate how they will be received in new situations and new places. For my participants, worries about not fitting were more than just internal calculation. Rather, others made all too clear that fat bodies are not welcome. Nina recalled nasty looks she received from other subway riders when she attempted to sit down. Decenia described an experience on a crowded commuter train in which the woman next to her openly expressed annoyance and disgust that their thighs were touching. Talia recalled being aggressively handed a weight loss brochure by a fellow passenger. When asked to contrast their experiences living in New York City with having travelled or lived elsewhere, participants almost universally described the New York as a more difficult place to live for fat people. However, the experiences of three of the Latinas that I interviewed troubled this narrative. Katrina felt that the harassment she received in her country of origin, the Dominican Republic, was far worse than what she now experienced in the New York Metropolitan Area. Although Decenia detailed painful experiences of anti-fat stigma in New York City, she nevertheless described her life as relatively “easy” compared to what it was like in her home country of Brazil. And Denisa contrasted her neighbourhood of East Harlem with other parts of Manhattan: “In Harlem it's different. Everybody is really fat or plump – so you feel a bit more comfortable. Not everybody, but there's a mix. Downtown – there's no mix.” Collectively, their stories serve as a reminder (see Franko et al.; Grabe and Hyde) to be suspicious of over determined accounts that “Latino culture” is (or people of colour communities in general are), more accepting of larger bodies and more resistant to weight-based stigma and discrimination. Their comments also reflect arguments made by Colls, Grosz, and Garland Thomson, who have all pointed to the contingent nature between space and bodies. Colls argue that sizing is both a material and an emotional process – what size we take ourselves to be shifts in different physical and emotional contexts. Grosz suggests that there is a “mutually constitutive relationship between bodies and cities” – one that, I would add, is raced, classed, and gendered. Garland Thomson has described the relationship between bodies and space/place as “a dynamic encounter between world and flesh.” These encounters, she states, are always contingent and situated: “When the spatial and temporal context shifts, so does the fit, and with it meanings and consequences” (592). In this sense, fat is materialized differently in different contexts and in different scales – nation, state, city, neighbourhood – and the materialization of fatness is always entangled with raced, classed, and gendered social and political-economic relations. Nevertheless, it is possible to draw some structural commonalities between divergent parts of the Greater New York City Metropolitan Area. Specifically, a dense population, cramped physical spaces, inaccessible transportation and transportation funding cuts, social norms of fast paced life, and elite, raced, classed, and gendered norms of status and beauty work to materialize fatness in such a way that a ‘misfit’ is often the result for fat people who live and/or work in this area. And importantly, misfitting, as Garland Thomson argues, has consequences: it literally “casts out” when the “shape and function of … bodies comes into conflict with the shape and stuff of the built world” (594). This casting out produces some bodies as irrelevant to social and economic life, resulting in segregation and isolation. To misfit, she argues, is to be denied full citizenship. Responsibilising the Present Garland Thomson, discussing Bynum’s statement that “shape carries story”, argues the following: “the idea that shape carries story suggests … that material bodies are not only in the spaces of the world but that they are entwined with temporality as well” (596). In this section, I discuss how participants described their decisions to get weight loss surgery by making references to the need take responsibility for health now, in the present, in order to avoid further and future morbidity and mortality. Following Adams et al., I look at how the fat body is lived in a state of constant anticipation – “thinking and living toward the future” (246). All of the participants I spoke with described long histories of weight cycling. While many managed to lose weight, none were able to maintain this weight loss in the long term – a reality consistent with the medical fact that dieting does not produce durable results (Kassirer and Angell; Mann et al.; Puhl and Heuer). They experienced this inability as not only distressing, but terrifying, as they repeatedly regained the lost weight plus more. When participants discussed their decisions to have surgery, they highlighted concerns about weight related comorbidities and mobility limitations in their explanations. Consistent then with Boero, Lopez, and Wadden et al., the participants I spoke with did not seek out surgery in hopes of finding a permanent way to become thin, but rather a permanent way to become healthy and normal. Concerns about what is considered to be normative health, more than simply concerns about what is held to be an appropriate appearance, motivated their decisions. Significantly, for these participants the decision to have bariatric surgery was based on concerns about future morbidity (and mortality) at least as much, if not more so, than on concerns about a current state of ill health and impairment. Some individuals I spoke with were unquestionably suffering from multiple chronic and even life threatening illnesses and feared they would prematurely die from these conditions. Other participants, however, made the decision to have bariatric surgery despite the fact that they had no comorbidities whatsoever. Motivating their decisions was the fear that they would eventually develop them. Importantly, medial providers explicitly and repeatedly told all of these participants that lest they take drastic and immediate action, they would die. For example: Faith’s reproductive endocrinologist said: “you’re going to have diabetes by the time you’re 30; you’re going to have a stroke by the time you’re 40. And I can only hope that you can recover enough from your stroke that you’ll be able to take care of your family.” Several female participants were warned that without losing weight, they would either never become pregnant or they would die in childbirth. By contrast, participants stated that their bariatric surgeons were the first providers they had encountered to both assert that obesity was a medical condition outside of their control and to offer them a solution. Within an atmosphere in which obesity is held to be largely or entirely the result of behavioural choices, the bariatric profession thus positions itself as unique by offering both understanding and what it claims to be a durable treatment. Importantly, it would be a mistake to conclude that some bariatric patients needed surgery while others choose it for the wrong reasons. Regardless of their states of health at the time they made the decision to have surgery, the concerns that drove these patients to seek out these procedures were experienced as very real. Whether or not these concerns would have materialized as actual health conditions is unknown. Furthermore, bariatric patients should not be seen as having been duped or suffering from ‘false consciousness.’ Rather, they operate within a particular set of social, cultural, and political-economic conditions that suggest that good citizenship requires risk avoidance and personal health management. As these individuals experienced, there are material and social consequences for ‘failing’ to obtain normative conceptualizations of health. This set of conditions helps to produce a bariatric patient population that includes both those who were contending with serious health concerns and those who feared they would develop them. All bariatric patients operate within this set of conditions (as do medical providers) and make decisions regarding health (current, future, or both) by using the resources available to them. In her work on the temporalities of dieting, Coleman argues that rather than seeing dieting as a linear and progressive event, we might think of it instead a process that brings the future into the present as potential. Adams et al suggest concerns about potential futures, particularly in regard to health, are a defining characteristic of our time. They state: “The present is governed, at almost every scale, as if the future is what matters most. Anticipatory modes enable the production of possible futures that are lived and felt as inevitable in the present, rendering hope and fear as important political vectors” (249). The ability to act in the present based on potential future risks, they argue, has become a moral imperative and a marker of proper of citizenship. Importantly, however, our work to secure the ‘best possible future’ is never fully assured, as risks are constantly changing. The future is thus always uncertain. Acting responsibly in the present therefore requires “alertness and vigilance as normative affective states” (254). Importantly, these anticipations are not diagnostic, but productive. As Adams et al state, “the future arrives already formed in the present, as if the emergency has already happened…a ‘sense’ of the simultaneous uncertainty and inevitability of the future, usually manifest in entanglements of fear and hope” (250). It is in this light, then, that we might see the decision to have bariatric surgery. For these participants, their future weight-related morbidity and mortality had already arrived in the present and thus they felt they needed to act responsibly now, by undergoing what they had been told was the only durable medical intervention for obesity. The emotions of hope, fear, anxiety and I would suggest, hatred, were key in making these decisions. Conclusion Medical, public health, and media discourses frame obesity as an epidemic that threatens to bring untold financial disaster and escalating rates of morbidity and mortality upon the nation state and the world at large. As Fraser et al argue, strong emotions (such hatred, fear, anxiety, and hope), are at the centre of these discourses; they construct, circulate, and proliferate them. Moreover, they create categories of people who are deemed legitimate and categories of others who are not. In this context, the participants I spoke with were caught between a desire to have fatness understood as a medical condition needing intervention; the anti-fat attitudes of others, including providers, which held that obesity was a failure of the will and nothing more; their own internalization of these messages of personal responsibility for proper behavioural choices, and, the biologically intractable nature of fatness wherein dieting not only fails to reduce weight in the vast majority of cases but results, in the long term, in increased weight gain (Kassirer and Angell; Mann et al.; Puhl and Heuer). Widespread anxiety and embarrassment over and fear and hatred of fatness was something that the individuals I interviewed experienced directly and which signalled to them that they were less than human. Their desire for weight loss, therefore was partially a desire to become ‘normal.’ In Butler’s term, it was the desire for a ‘liveable life. ’A liveable life, for these participants, included a desire for a seamless fit with the built environment. The individuals I spoke with were never more ashamed of their fatness than when they experienced a ‘misfit’, in Garland Thomson’s terms, between their bodies and the material world. Moreover, feelings of shame over this disjuncture worked in tandem with a deeply felt, pressing sense that something must be done in the present to secure a better health future. The belief that bariatric surgery might finally provide a durable answer to obesity served as a strong motivating factor in their decisions to undergo bariatric surgery. By taking drastic action to lose weight, participants hoped to contest stigmatizing beliefs that their fat bodies reflected pathological interiors. Moreover, they sought to demonstrate responsibility and thus secure proper subjectivities and citizenship. In this sense, concerns, anxieties, and fears about health cannot be disentangled from the experience of anti-fat stigma and discrimination. Again, anti-fat bias, for these participants, was more than discursive: it operated through the circulation of emotion and was experienced in a very material sense. The decision to have weight loss surgery can thus be seen as occurring at the interface of emotion, flesh, space, place, and time, and in ways that are fundamentally shaped by the broader social context of neoliberal healthism. AcknowledgmentI am grateful to the anonymous reviewers of this article for their helpful feedback on earlier version. References Adams, Vincanne, Michelle Murphy, and Adele E. Clarke. “Anticipation: Technoscience, Life, Affect, Temporality.” Subjectivity 28.1 (2009): 246-265. 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Colls, Rachel. “‘Looking Alright, Feeling Alright:’ Emotions, Sizing, and the Geographies of Women’s Experience of Clothing Consumption.” Social & Cultural Geography 5.4 (2004): 583-596. Crawford, Robert. “You Are Dangerous to Your Health: The Ideology and Politics of Victim Blaming.” International Journal of Health Services 7.4 (1977): 663-680. ———. “Health as a Meaningful Social Practice.: Health 10.4 (2006): 401-20. Dedoose. Computer Software. n.d. Franko, Debra L., Emilie J. Coen, James P. Roehrig, Rachel Rodgers, Amy Jenkins, Meghan E. Lovering, Stephanie Dela Cruz. “Considering J. Lo and Ugly Betty: A Qualitative Examination of Risk Factors and Prevention Targets for Body Dissatisfaction, Eating Disorders, and Obesity in Young Latina Women.” Body Image 9.3 (2012), 381-387. Fikken, Janna J., and Esther D. Rothblum. “Is Fat a Feminist Issue? Exploring the Gendered Nature of Weight Bias.” Sex Roles 66.9-10 (2012): 575-592. Fraser, Suzanne, JaneMaree Maher, and Jan Wright. “Between Bodies and Collectivities: Articulating the Action of Emotion in Obesity Epidemic Discourse.” Social Theory & Health 8.2 (2010): 192-209. Garland Thomson, Rosemarie. “Misfits: A Feminist Materialist Disability Concept.” Hypatia 26.3 (2011): 591-609. Goffman, Erving. Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster, 1963. Grabe, Shelly, and Janet S. Hyde. “Ethnicity and Body Dissatisfaction among Women in the United States: A Meta-Analysis.” Psychological Bulletin 132.2 (2006): 622. Greenhalgh, Susan. “Weighty Subjects: The Biopolitics of the U.S. War on Fat.” American Ethnologist 39.3 (2012): 471-487. Grosz, Elizabeth A. “Bodies-Cities.” Feminist Theory and the Body: A Reader, eds. Janet Price and Margrit Shildrick. New York: Routledge, 1999. 381-387. 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McPhail, Deborah. “What to Do with the ‘Tubby Hubby?: ‘Obesity,’ the Crisis of Masculinity, and the Nuclear Family in Early Cold War Canada. Antipode 41.5 (2009): 1021-1050. Mann, Traci, A. Janet Tomiyama, Erika Westling, Ann-Marie Lew, Barbara Samuels, and Jason Chatman. “Medicare’s Search for Effective Obesity Treatments.” American Psychologist 62.3 (2007): 220-233. Metzl, Jonathan. “Introduction: Why ‘Against Health?’” Against Health: How Health Became the New Morality, eds. Jonathan Metzl and Anna Kirkland. New York: NYU Press, 2010. 1-14. Puhl, Rebecca M. “Obesity Stigma: Important Considerations for Public Health.” American Journal of Public Health 100.6 (2010): 1019-1028.———, and Kelly D. Brownell. “Psychosocial Origins of Obesity Stigma: Toward Changing a Powerful and Pervasive Bias.” Obesity Reviews 4.4 (2003): 213-227. ——— and Chelsea A. Heuer. “The Stigma of Obesity: A Review and Update.” Obesity 17.5 (2009): 941-964. Schafer, Markus H., and Kenneth F. 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Abstract:

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

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IntroductionContemporary societies are increasingly becoming sites in which it is more difficult for people to respectfully negotiate disagreements about human diversity. This is exemplified by people who must oppose oppressive social conventions that marginalise them because they identify as belonging to one or more minority groups. One of the key factors in this dynamic is how people’s being in particular sites impacts their being as a person. The “fate of the stranger” is shaped by the spaces they inhabit and people are labelled as “insiders or outsiders” (Amin Land 2); for many people this means our societies are sites of dissatisfaction. For example, in some sites asylum seekers and refugees are referred to as “co-habitant and potential citizen,” while in other sites they are referred to as “impure and threats” (Amin Land 2). This process of defining a person’s being is also experienced by people who are “multi-abled, multi-sexed, multi-sexual, or multi-faith” (Garbutt 275). This article provides a reading of the Human Library in relation to contemporary understandings of space from human geographers such as Ash Amin, as a way of rethinking our everyday spaces as sites for protesting the marginalisation of difference. It primarily draws on my researching and organising Human Libraries across Australia.Protest can employ both instrumental and expressive forms of activism. Instrumental activism aims to change law or policy, gain improvements in living conditions, and win important human services. Expressive activism is often understood as a continuum of political acts extending from lawful demonstrations through to violent activities. Recent studies demonstrate that protest has developed beyond such conventional forms (Dalton, Van Sickle, and Weldon). Contemporary protest includes such things as: acts of spontaneity (Snow and Moss); advocating rights via cultural rather than political protest (Bruce); and activating spatial politics by engaging in urban public spaces to highlight long-standing socio-spatial inequalities (Marom).These examples demonstrate the tension that exists within contemporary protest. While some people accuse expressive activism of being “a thing-for-itself that is not aimed at producing results”, others recognise that “both expressive and instrumental activism are necessary and important” (Maddison and Scalmer 69-71). Far from being self-interested, protest that adopts expressive activism offers its practitioners an important tool:Expressive activism is oriented towards the construction, reconstruction and/or transformation of norms, values, identities and ways of living and being. It is not just about ‘who we are’ […] but also about ‘how we are’ in the world, consequently requiring evaluation of ‘what we do’ and ‘how we do it’. (Stammers 164-165)This understanding of expressive activism provides a useful lens for reading the Human Library as a means of rethinking everyday spaces as sites for protesting the marginalisation of difference. This is particularly so because the Human Library, as an activist organisation dedicated to increasing respect for difference, is situated within the contemporary anti-prejudice movement (Stammers; Chesters and Welsh; Watson "'You Shouldn't Have to Suffer'").Introducing the Human LibraryHuman Libraries transform the spaces provided by traditional libraries into spaces that challenge contemporary socio-spatial dynamics. Human Libraries provide people (Readers) with a safe space in which they can choose another person (a volunteer known as a Human Book) and engage in a conversation or ‘reading’ about the way that people perceive and experience difference. Readers choose their Human Books from a catalogue of titles and descriptions which are developed by each Human Book.and express something about how they identify. For example, titles include such things as belonging to sexual minority groups, living with physical or mental impairment, or belonging to different ethnic and cultural backgrounds. Each ‘reading’ is defined by three rules: 1) you may raise any topic or ask any question; 2) a ‘reading’ is a dialogue so Human Books ask their Readers questions too; and 3) each person may decline to answer any question and to end the reading at any time. Using this method, Human Libraries protest the way in which socio-spatial norms marginalise people who are different. They enact a form of expressive activism that reconstructs the way that norms are used in local sites to marginalise different ways of living and being. This reconstruction of the relationship between norms and sites enables people to be “who we are” and “how we are” without having to be inauthentic about “what we do” and “how we do it” (Stammers 164-165).The first Human Library took place at the Roskilde Festival (Denmark) in the summer of 2000 and as an international activist organisation within the anti-prejudice movement, has since become active in over 80 countries and used in a variety of local community sites thus demonstrating its ability to “transcend borders and be adapted to different situations” (Abergel et al. 13). It now operates in such diverse settings as local libraries, universities, schools, music and cultural festivals and workplaces. Participants’ (Organisers, Readers and Human Books) reflections on their experiences of engaging in Human Libraries helps to illustrate how they perceive Human Libraries as sites that challenge socio-spatial norms.Human Libraries enable people to create sites that reverse our usual social interactions. The following phrases, used by participants to describe their contact with the Human Library, illustrate this. An Organiser, whose local government job requires her to develop projects that encourage interactions between in-groups and out-groups, explains that Human Libraries bring people who usually live “on the margins […] into the centre of the page” and that “the powerful people […] who are usually in the centre” are required to listen to different experiences. Likewise, Human Books describe themselves as being “totally open” in order to encourage their Readers to ask about topics that society labels as “taboo”. Readers illustrate how they encounter Human Libraries in ways that the other spaces in their day-to-day lives function. One Reader talks about “stumbling upon” a Human Library within a community event and describes this as “a kind of a stroke of brilliance to catch people at a place like that rather than in a more conventional library setting”. Other Readers emphasise the significance of this type of encounter when they explain that they “probably wouldn’t just go and bother someone in the street” and that participating in a Human Library has provided a type of conversation “that doesn’t happen in any other way”. The outcome of this is highlighted by a Reader who explains that she pushed herself “to go beyond […] just a polite social conversation” because the Human Library “lays it all out there and says, we’re here to talk” (Watson "'You Shouldn't Have to Suffer'" 124-132). These descriptions of people’s experiences of Human Libraries demonstrate how they perceive Human Libraries as spaces that enable them to have conversations with people they would not normally speak to about topics they would usually feel unable to speak about. Their examples are better appreciated when considered along with the scholarship on the interconnectedness of space and intergroup relations.The Interconnectedness of Space and Intergroup RelationsA multiplicity of spaces shape people’s everyday lives. The everyday refers to the “flow of routine” often defined by such mundane habitual practices as going to work, crossing streets and shopping (Dirksmeier and Helbrecht 495). Who a person is, where a person lives, the spaces a person can enter and move about, and how a person is treated in those spaces are intertwined. Belonging is not an abstract concept; as people move in and out of different spaces they demonstrate how belonging is “experienced differentially, and the pleasures and powers it confers are not distributed evenly but [are] linked to relations of inequality and practices of social exclusion” (Noble and Poynting 490). This warns us against romanticizing the urban space of the city and regarding it over-simplistically as neutral and accessible to all, as a space of open flow and untroubled human interaction and as a natural catalyst for proximate reflexivity (Noble and Poynting; Amin and Thrift; Amin Land; Priest et al.).Acknowledging the negative impacts inherent in the interconnectedness of the city and intergroup relations, some scholars have moved their attention from examining integration at the macrospatial level of society to studying the microecology of segregation (Clack, Dixon, and Tredoux; Dixon, Tredoux and Clack; Alexander and Tredoux; Priest et al.; Thomas; Dandy and Pe-Pua; Dixon and Durrheim; Durrheim et al.). This shifts the focus from a primary interest in the city and the neighbourhood to a closer examination of people’s everyday life spaces. This focus examines how members of different groups “share proximity and co-presence” (Clack, Dixon, and Tredoux 2) and engage in informal practices that uphold barriers (Alexander and Tredoux; Dixon and Durrheim). For example, people were observed as they shared spaces such as beaches, school cafeterias and university class rooms and were found to use these spaces in ways that enacted segregation along lines of race, ethnicity, age, and gender. In examples such as these, everyday life spaces are seen to function in ways that (re)instate borders around difference through everyday spatial practices and they act as sites in which “informal segregation practices can be enacted and reproduced” (Priest et al. 32). The shift in scholarly interest to the microecology of segregation serves my interest in how we might use everyday spaces as sites to contest segregation. The following discusses three everyday spaces that serve this interest.The Space of the Everyday UrbanThe macrospatial terrain of the world’s cities and towns is increasingly defined by difference and their public spaces are often spaces of “visibility and encounter between strangers” (Amin "Ethnicity" 967). Negotiating difference is a natural part of living in these large urban spaces and it is an increasingly more common experience in, what was previously, the typically hom*ogenous setting of rural communities. This process of negotiation occurs most noticeably within the microecology of the “everyday urban,” a context defined by the interconnection of everyday spaces and intergroup relations (Alexander and Tredoux; Durrheim et al.; Dixon and Durrheim). It is here that we find “the micropolitics of everyday social contact and encounter” (Amin "Ethnicity" 959). These everyday spaces include our streets, parks, malls, and cafes, and they are often described as shared spaces of freedom, mingling, and serendipitous encounters. However, while spaces such as these can place people from diverse backgrounds and groups in close proximity, it is important not to overstate their effectiveness in helping people negotiate difference (Wise; Noble "Cosmopolitan Habits"; Priest et al.; Valentine "Living"). This is the case because urban public spaces can carry a reverse side to the provision of proximity. They are often “spaces of transit with very little contact between strangers” (Amin "Ethnicity" 967). As such, urban public spaces do not naturally serve our need to negotiate our everyday encounters with others (Amin and Thrift; Amin, Massey, and Thrift; Rosaldo; Amin "Ethnicity").This illuminates the need to rethink our everyday public spaces and start to unsettle and shift how some spaces act to perpetuate negative and habitual socio-spatial norms which encourage avoidance rather than provide spaces to contest inequality and inequity (Alexander and Tredoux; Durrheim et al.; Clack, Dixon, and Tredoux; Dixon and Durrheim; Wise). Participants at Human Libraries demonstrate that they recognise this when they explain that they do not feel able to approach and speak with people who are different in everyday spaces such as the street, public transport and shops. They point out that they feel that socio-spatial norms dictate that it is rude, impolite or intrusive to approach strangers and people who are different in public spaces and to begin a conversation, especially about difference (Watson "'You Shouldn't Have to Suffer'"). Examples such as this signal how everyday urban spaces embody socio-spatial norms and practices that impede people’s capacity to engage in everyday acts that protest the marginalisation of difference. This clarifies why “even in the most carefully designed and inclusive spaces, the marginalised and the prejudiced stay away” (Amin "Ethnicity" 968). This alerts us to the need to better appreciate what occurs in other everyday spaces in which people associate even more closely.Spaces and the MicropublicOther everyday spaces in which people spend a significant amount of time are spaces of association, referred to as micropublics (Amin "Ethnicity"; Noble "Cosmopolitan Habits"). They include those places in which we work, study, play sports, and recreate. Micropublics function as spaces of habitual engagement, interdependence and “prosaic negotiations” (Amin "Ethnicity" 969). For example, we attend our place of work on a daily basis which requires us to communicate and interact with our colleagues as well as navigate other forms of elementary social etiquette. In this way, micropublics often bring people from diverse backgrounds and identity groups together in spaces that require them to interact with people who are different to themselves. In practice, however, the contact people undertake in their micropublics tends to be illusory and includes practices of informal segregation (Dixon and Durrheim; Alexander and Tredoux; Clack, Dixon, and Tredoux). This highlights that “co-presence and collaboration are two very different things” and that micropublics do not immediately serve as sites for protesting the marginalisation of difference (Amin Land 59).Participants at Human Libraries share experiences taken from their own work places and schools and suggest that the codes of civility that are enforced within these micropublics make it difficult, if not impossible, to engage in certain conversations. For example, Readers at Human Libraries disclose that they do not feel comfortable discussing issues of physical impairment or mental illness with colleagues who live with disability and mental illness. Similarly, high school students explain that they feel unable to discuss what it means to be gay, lesbian or bisexual with their fellow-students who identity as LGBTQI (Watson "'You Shouldn't Have to Suffer'"). Examples such as these demonstrate how micropublics embody “degrees and modalities of familiarity and strangeness” (Noble "Strange Familiarities" 33) and that even though they may embody degrees of collaboration and contribute to a shift in the way people develop various forms of familiarity, they do not naturally lend themselves to protesting the way in which codes of civility camouflage disrespect for difference. These experiences alert us to the way that our everyday spaces and the norms attached to them contribute to defining what it means to be and to belong.Spaces and BeingPeople’s experiences of marginalisation in public spaces illuminates how people’s freedom to be in particular spaces and their being – their humanity – are intimately connected. This happens as people who are made to feel that they should not be in a space are sent the message that they do not have the right to be at all (Noble and Poynting). Valentine ("Prejudice" 531) explains how this is demonstrated by the way some people speak about other people who are different in relation to public and private spaces:Individuals stated that they believed in individual freedom and were not prejudiced against minority groups and yet saw no contradiction in then expressing hostility towards seeing lesbians and gay men kissing on the street, or women wearing the hijab in their neighbourhood or feeling uncomfortable at the sight of a disabled person in public or being inconvenienced by disabled access provisions.This response reveals how some people frame acceptance of minority groups using the criteria of invisibility and how spatial norms define “appropriate embodied ways of being in public space” (Valentine "Prejudice" 532). This exemplifies how some people regard it as tolerable for minority groups to express their difference at home but not in public because this would be considered as imposing “their way of life” upon majority people, thus transgressing spatial norms about appropriate embodied ways of being in public spaces.People who participate at Human Libraries as Readers illustrate this dynamic when they share how, during the course of their everyday lives, they have come in contact with people with disabilities or met people who identify as gay, lesbian or transgender and have recognised negative feelings within themselves such as discomfort, embarrassment, or have refused to recognise a person’s authentic identity. They also admit to hiding these feelings in public but expressing them once they return home (Watson "'You Shouldn't Have to Suffer'"; Kudo et al.). Similarly, people who volunteer as Human Books speak about their experiences of being in public spaces and feeling unsafe or the target of negative treatment. For example, Human Books who identify as gay comment that they need to do a “safety check” before showing signs of physical affection in public; Human Books whose physical appearance does not align with social constructs of gender relate that they have been banned from using public toilets; and Human Books with eating disorders speak about being labelled as “crazy” (Watson "'You Shouldn't Have to Suffer'"; Watson "Being a Human Book"). Behaviours such as these demonstrate how people who are different are defined and treated as lesser beings in public spaces and are relegated to segregated micropublics such as their homes as well as groups and clubs dedicated to particular minorities.Conclusion: Rethinking Our SpacesThe above discussion includes a number of findings that are informative when thinking about how our everyday spaces might act as sites for protesting the marginalisation of difference. The following offers a concluding discussion about how we might approach such a project, paying particular attention to what we can learn from the Human Library.Firstly, Human Libraries exemplify the need to develop sites that protest the way in which our everyday public spaces do not naturally serve our need to negotiate our everyday encounter with difference (Noble and Poynting; Amin and Thrift; Amin Strangers; Priest et al.). Readers indicate that Human Libraries are spaces that make it possible for them to meet people they don’t feel able to approach in other everyday public spaces. As such, Human Libraries illuminate the importance of developing sites that protest social and spatial norms by enabling “encounter between strangers” (Amin "Ethnicity" 967).Secondly, Human Libraries protest the space of the micropublic as sites that are illusory, superficial, and bearers of informal segregation (Clack, Dixon, and Tredoux; Dixon, Tredoux and Clack; Alexander and Tredoux; Priest et al.; Thomas; Dandy and Pe-Pua; Dixon and Durrheim; Durrheim et al.). They achieve this by being sites in which no topic or question is taboo and that welcome and value respectful conversations about difference. Readers are able to speak to Human Books about differences such as what it is like to live with physical impairment, to be lesbian and/or to be an immigrant or a refugee. Their conversations are much deeper than the superficial conversations they feel restricted to within the confines of their everyday micropublics which enables them to protest codes of civility that render conversations about the marginalisation of difference as unacceptable (Watson "'You Shouldn't Have to Suffer'"; Watson "Being a Human Book").Thirdly, Human Libraries provide sites that protest the way in which other spaces define people who are different as lesser beings because Human Libraries are spaces in which every person has the right to be their authentic self. They are spaces that make it possible for people to be 'who we are’ by authentically being ‘how we are’ (Stammers 164-165). They shed a light on the way that a person’s being is sometimes distorted by how they experience being in a particular space and in doing so protest spatial norms that divide, marginalise and diminish people by marginalising them via the criteria of invisibility (Clack, Dixon, and Tredoux; Dixon and Durrheim; Thomas). For this reason, Human Libraries can be regarded as safe spaces to meet people who are different and bring people from the margins of society to its centre as sites that protest the marginalisation of difference.ReferencesAbergel, Ronni, et al. Don't Judge a Book by Its Cover? The Living Library Organiser's Guide. Budapest: Council of Europe 2005.Alexander, Lameez, and Colin Tredoux. "The Spaces between Us: A Spatial Analysis of Informal Segregation at a South African University." Journal of Social Issues 66.2 (2010): 367-86.Amin, Ash. "Ethnicity and the Multicultural City: Living with Diversity." Environment and Planning A 34.6 (2002): 959-80.———. Land of Strangers. Cambridge: Polity, 2012.———, D. Massey, and Nigel Thrift. Cities for the Many Not the Few. Bristol: Policy P, 2000.———, and Nigel Thrift. Cities: Reimagining the Urban. Cambridge: Polity, 2002.Bruce, Katherine Mcfarland. "LGBT Pride as a Cultural Protest Tactic in a Southern City." Journal of Contemporary Ethnography 42.5 (2013): 608-35.Clack, Beverley, John Dixon, and Colin Tredoux. "Eating Together Apart: Patterns of Segregation in a Multi-Ethnic Cafeteria." Journal of Community & Applied Social Psychology 15.1 (2005): 1-16.Dalton, Russell, Alix Van Sickle, and Steven Weldon. "The Individual–Institutional Nexus of Protest Behaviour." Brit. J. Polit. Sci. 40.1 (2010): 51-73.Dandy, Justine, and Rogelia Pe-Pua. "Beyond Mutual Acculturation." Zeitschrift für Psychologie 221.4 (2013): 232-41.Dirksmeier, Peter, and Ilse Helbrecht. "Everyday Urban Encounters as Stratification Practices." City 19.4 (2015): 486-98.Dixon, John, and Kevin Durrheim. "Contact and the Ecology of Racial Division: Some Varieties of Informal Segregation." British Journal of Social Psychology 42.1 (2003): 1-23.———, Colin Tredoux, and Beverley Clack. "On the Micro-Ecology of Racial Division: A Neglected Dimension of Segregation." South African Journal of Psychology 35.3 (2005): 395-411.Durrheim, Kevin, et al. "From Exclusion to Informal Segregation: The Limits to Racial Transformation at the University of Natal." Social Dynamics 30.1 (2004): 141-69.Garbutt, Rob. "The Living Library: Some Theoretical Approaches to a Strategy for Activating Human Rights and Peace." Activating Human Rights and Peace: Universal Responsibility Conference 2008 Conference Proceedings. Ed. Rob Garbutt.Kudo, Kazuhiro, et al. "Bridging Difference through Dialogue: Preliminary Findings of the Outcomes of the Human Library in a University Setting." 2011 Shanghai International Conference on Social Science. Maddison, Sarah, and Sean Scalmer. Activist Wisdom: Practical Knowledge and Creative Tension in Social Movements. Sydney: UNSW P, 2006.Marom, Nathan. "Activising Space: The Spatial Politics of the 2011 Protest Movement in Israel." Urban Studies 50.13 (2013): 2826-41.Noble, Greg. "Cosmopolitan Habits: The Capacities and Habitats of Intercultural Conviviality." Body & Society 19.2-3 (2013): 162-85.———. "Strange Familiarities: A Response to Ash Amin's Land of Strangers." Identities 20.1 (2013): 31-36.———, and Scott Poynting. "White Lines: The Intercultural Politics of Everyday Movement in Social Spaces." Journal of Intercultural Studies 31.5 (2010): 489-505.Priest, Naomi, et al. "Patterns of Intergroup Contact in Public Spaces: Micro-Ecology of Segregation in Australian Communities." Societies 4.1 (2014): 30-44.Rosaldo, R. "Cultural Citizenship, Inequality and Multiculturalism." Race, Identity, and Citizenship. Eds. R. Torres, L. Miron, and J. Inda. Oxford: Blackwell, 1999.Snow, David A., and Dana M. Moss. "Protest on the Fly: Toward a Theory of Spontaneity in the Dynamics of Protest and Social Movements." American Sociological Review 79.6 (2014): 1122-43.Stammers, Neil. Human Rights and Social Movements. London: Pluto P, 2009.Thomas, Mary E. "‘I Think It's Just Natural’: The Spatiality of Racial Segregation at a US High School." Environment and Planning A 37.7 (2005): 1233-48.Valentine, Gill. "Living with Difference: Reflections on Geographies of Encounter." Progress in Human Geography 32.3 (2008): 323-37.———. "Prejudice: Rethinking Geographies of Oppression." Social & Cultural Geography 11.6 (2010): 519-37.Watson, Greg. "Being a Human Book: Conversations for Rupturing Prejudice." Rites of Spring. Ed. Julie Lunn. Perth: Black Swan P, 2017.———. "'You Shouldn't Have to Suffer for Being Who You Are': An Examination of the Human Library Strategy for Challenging Prejudice and Increasing Respect for Difference." Curtin University, 2015.Wise, Amanda. "Hope in a Land of Strangers." Identities 20.1 (2013): 37-45.

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Introduction Children are not only born digital, they are fashioned toward a lifestyle that needs them to be digital all the time (Palfrey and Gasser). They click, tap, save, circulate, download, and upload the texts of their lives, their friends’ lives, and the anonymous lives of the people that surround them. They are socialised as Internet consumers ready to participate in digital services targeted to them as they age such as Snapchat, Instagram, and YouTube. But they are also fashioned as producers, whereby their lives are sold as content on these same markets. As commodities, the minutiae of their lives become the fodder for online circulation. Paradoxically, we also celebrate these digital behaviours as a means to express identity. Personal profile-building for adults is considered agency-building (Beer and Burrows), and as a consequence, we praise children for mimicking these acts of adult lifestyle. This article reflects on the Kids, Creative Storyworlds, and Wearables project, which involved an ethnographic study with five young children (ages 4-7), who were asked to share their autobiographical stories, creative self-narrations, and predictions about their future mediated lives (Atkins et al.). For this case study, we focus on commercialised forms of children’s automedia, and we compare discussions we had with 6-year old Cayden, a child we met in the study who expresses the desire to make himself famous online, with videos of Jacob, a child vlogger on YouTube’s Kinder Playtime, who clearly influences children like Cayden. We argue that child social influencers need consideration both as autobiographical agents and as child subjects requiring a sheltered approach to their online lives.Automedia Automedia is an emergent genre of autobiography (Smith and Watson Reading 190; “Virtually Me” 78). Broadcasting one’s life online takes many forms (Kennedy “Vulnerability”). Ümit Kennedy argues “Vlogging on YouTube is a contemporary form of autobiography in which individuals engage in a process of documenting their life on a daily or weekly basis and, in doing so, construct[ing] their identity online” (“Exploring”). Sidonie Smith and Julia Watson write that “visual and digital modes are projecting and circulating not just new subjects but new notions of subjectivity through the effects of automediality” with the result that “the archive of the self in time, in space and in relation expands and is fundamentally reorganized” (Reading 190). Emma Maguire addresses what online texts “tell us about cultural understandings of selfhood and what it means to communicate ‘real’ life through media” naming one tool, “automedia”. Further, Julie Rak calls on scholars “to rethink ‘life’ and ‘writing’ as automedia” to further “characterize the enactment of a personal life story in a new media environment.” We define automedia as a genre that involves the practices of creating, performing, sharing, circulating, and (at times) preserving one’s digital life narrative meant for multiple publics. Automedia revises identity formation, embodiment, or corporealities in acts of self-creation (Brophy and Hladki 4). Automedia also emphasizes circulation. As shared digital life texts now circulate through the behaviours of other human subjects, and automatically via algorithms in data assemblages, we contend that automediality currently involves a measure of relinquishing control over perpetually evolving mediatised environments. One cannot control how a shared life narrative will meet a public in the future, which is a revised way of thinking about autobiography. For the sake of this paper, we argue that children’s automedia ought to be considered a creative, autobiographical act, in order to afford child authors who create them the consideration they deserve as agents, now and in the future. Automedial practices often begin when children receive access to a device. The need for a distraction activity is often the reason parents hand a young child a smartphone, iPad, or even a wearable camera (Nansen). Mirroring the lives of parents, children aspire to share representations of their own personal lives in pursuit of social capital. They are often encouraged to use technologies and apps as adults do–to track aspects of self, broadcast life stories and eventually “live share” them—effectively creating, performing, sharing, and at times, seeking to preserve a public life narrative. With this practice, society inculcates children into spheres of device ubiquity, “socializing them to a future digital lifestyle that will involve always carrying a computer in some form” (Atkins et al. 49). Consequently, their representations become inculcated in larger media assemblages. Writing about toddlers, Nansen describes how the “archiving, circulation and reception of these images speaks to larger assemblages of media in which software protocols and algorithms are increasingly embedded in and help to configure everyday life (e.g. Chun; Gillespie), including young children’s media lives (Ito)” (Nansen). Children, like adult citizens, are increasingly faced with choices “not structured by their own preferences but by the economic imperatives of the private corporations that have recently come to dominate the internet” (Andrejevic). Recent studies have shown that for children and youth in the digital age, Internet fame, often characterized by brand endorsem*nts, is a major aspiration (Uhls and Greenfield, 2). However, despite the ambition to participate as celebrity digital selves, children are also mired in the calls to shield them from exposure to screens through institutions that label these activities detrimental. In many countries, digital “protections” are outlined by privacy commissioners and federal or provincial/state statutes, (e.g. Office of the Privacy Commissioner of Canada). Consequently, children are often caught in a paradox that defines them either as literate digital agents able to compose or participate with their online selves, or as subjectified wards caught up in commercial practices that exploit their lives for commercial gain.Kids, Creative Storyworlds and Wearables ProjectBoth academic and popular cultural critics continually discuss the future but rarely directly engage the people who will be empowered (or subjugated) by it as young adults in twenty years. To address children’s lack of agency in these discussions, we launched the Kids, Creative Storyworlds and Wearables project to bring children into a dialogue about their own digital futures. Much has been written on childhood agency and participation in culture and mediated culture from the discipline of sociology (James and James; Jenks; Jenkins). In previous work, we addressed the perspective of child autobiographical feature filmmakers to explore issues of creative agency and consent when adult gatekeepers facilitate children in film production (Pedersen and Aspevig “My Eyes”; Pedersen and Aspevig “Swept”). Drawing on that previous work, this project concentrates on children’s automediated lives and the many unique concerns that materialize with digital identity-building. Children are categorised as a vulnerable demographic group necessitating special policy and legislation, but the lives they project as children will eventually become subsumed in their own adult lives, which will almost certainly be treated and mediated in a much different manner in the future. We focused on this landscape, and sought to query the children on their futures, also considering the issues that arise when adult gatekeepers get involved with child social media influencers. In the Storyworlds ethnographic study, children were given a wearable toy, a Vtech smartwatch called Kidizoom, to use over a month’s timeframe to serve as a focal point for ethnographic conversations. The Kidizoom watch enables children to take photos and videos, which are uploaded to a web interface. Before we gave them the tech, we asked them questions about their lives, including What are machines going to be like in the future? Can you imagine yourself wearing a certain kind of computer? Can you tell/draw a story about that? If you could wear a computer that gave you a super power, what would it be? Can you use your imagination to think of a person in a story who would use technology? In answering, many of them drew autobiographical drawings of technical inventions, and cast themselves in the images. We were particularly struck by the comments made by one participant, Cayden (pseudonym), a 6-year-old boy, and the stories he told us about himself and his aspirations. He expressed the desire to host a YouTube channel about his life, his activities, and the wearable technologies his family already owned (e.g. a GroPro camera) and the one we gave him, the Kidizoom smartwatch. He talked about how he would be proud to publically broadcast his own videos on YouTube, and about the role he had been allowed to play in the making of videos about his life (that were not broadcast). To contextualize Cayden’s commentary and his automedial aspirations, we extended our study to explore child social media influencers who broadcast components of their personal lives for the deliberate purpose of popularity and the financial gain of their parents.We selected the videos of Jacob, a child vlogger because we judged them to be representative of the kinds that Cayden watched. Jacob reviews toys through “unboxing videos,” a genre in which a child tells an online audience her or his personal experiences using new toys in regular, short videos on a social media site. Jacob appears on a YouTube channel called Kinder Playtime, which appears to be a parent-run channel that states that, “We enjoy doing these things while playing with our kids: Jacob, Emily, and Chloe” (see Figure 1). In one particular video, Jacob reviews the Kidizoom watch, serving as a child influencer for the product. By understanding Jacob’s performance as agent-driven automedia, as well as being a commercialised, mediatised form of advertising, we get a clearer picture of how the children in the study are coming to terms with their own digital selfhood and the realisation that circulated, life-exposing videos are the expectation in this context.Children are implicated in a range of ways through “family” influencer and toy unboxing videos, which are emergent entertainment industries (Abidin 1; Nansen and Nicoll; Craig and Cunningham 77). In particular, unboxing videos do impact child viewers, especially when children host them. Jackie Marsh emphasizes the digital literacy practices at play here that co-construct viewers as “cyberflâneur[s]” and she states that “this mode of cultural transmission is a growing feature of online practices for this age group” (369). Her stress, however, is on how the child viewer enjoys “the vicarious pleasure he or she may get from viewing the playing of another child with the toy” (376). Marsh writes that her study subject, a child called “Gareth”, “was not interested in being made visible to EvanHD [a child celebrity social media influencer] or other online peers, but was content to consume” the unboxing videos. The concept of the cyberflâneur, then, is fitting as a mediatising co-constituting process of identity-building within discourses of consumerism. However, in our study, the children, and especially Cayden, also expressed the desire to create, host, and circulate their own videos that broadcast their lives, also demonstrating awareness that videos are valorised in their social circles. Child viewers watch famous children perform consumer-identities to create an aura of influence, but viewers simultaneously aspire to become influencers using automedial performances, in essence, becoming products, themselves. Jacob, Automedial Subjects and Social Media InfluencersJacob is a vlogger on YouTube whose videos can garner millions of views, suggesting that he is also an influencer. In one video, he appears to be around the age of six as he proudly sits with folded hands, bright eyes, and a beaming, but partly toothless smile (see Figure 2). He says, “Welcome to Kinder Playtime! Today we have the Kidi Zoom Smartwatch DX. It’s from VTech” (Kinder Playtime). We see the Kidi Zoom unboxed and then depicted in stylized animations amid snippets of Jacob’s smiling face. The voice and hands of a faceless parent guide Jacob as he uses his new wearable toy. We listen to both parent and child describe numerous features for recording and enhancing the wearer’s daily habits (e.g. calculator, calendar, fitness games), and his dad tells him it has a pedometer “which tracks your steps” (Kinder Playtime). But the watch is also used by Jacob to mediate himself and his world. We see that Jacob takes pictures of himself on the tiny watch screen as he acts silly for the camera. He also uses the watch to take personal videos of his mother and sister in his home. The video ends with his father mentioning bedtime, which prompts a “thank you” to VTech for giving him the watch, and a cheerful “Bye!” from Jacob (Kinder Playtime). Figure 1: Screenshot of Kinder Playtime YouTube channel, About page Figure 2: Screenshot of “Jacob,” a child vlogger at Kinder Playtime We chose Jacob for three reasons. First, he is the same age as the children in the Storyworlds study. Second, he reviews the smart watch artifact that we gave to the study children, so there was a common use of automedia technology. Third, Jacob’s parents were involved with his broadcasts, and we wanted to work within the boundaries of parent-sanctioned practices. However, we also felt that his playful approach was a good example of how social media influence overlaps with automediality. Jacob is a labourer trading his public self-representations in exchange for free products and revenue earned through the monetisation of his content on YouTube. It appears that much of what Jacob says is scripted, particularly the promotional statements, like, “Today we have the Kidizoom Smartwatch DX. It’s from VTech. It’s the smartest watch for kids” (Kinder Playtime). Importantly, as an automedial subject Jacob reveals aspects of his self and his identity, in the manner of many child vloggers on public social media sites. His product reviews are contextualised within a commoditised space that provides him a means for the public performance of his self, which, via YouTube, has the potential to reach an enormous audience. YouTube claims to have “over a billion users—almost one-third of all people on the Internet—and every day people watch hundreds of millions of hours on YouTube and generate billions of views” (YouTube). Significantly, he is not only filmed by others, Jacob is also a creative practitioner, as Cayden aspired to become. Jacob uses high-tech toys, in this case, a new wearable technology for self-compositions (the smart watch), to record himself, friends, family or simply the goings-on around him. Strapped to his wrist, the watch toy lets him play at being watched, at being quantified and at recording the life stories of others, or constructing automediated creations for himself, which he may upload to numerous social media sites. This is the start of his online automediated life, which will be increasingly under his ownership as he ages. To greater or lesser degrees, he will later be able to curate, add to, and remediate his body of automedia, including his digital past. Kennedy points out that “people are using YouTube as a transformative tool, and mirror, to document, construct, and present their identity online” (“Exploring”). Her focus is on adult vloggers who consent to their activities. Jacob’s automedia is constructed collaboratively with his parents, and it is unclear how much awareness he has of himself as an automedia creator. However, if we don’t afford Jacob the same consideration as we afford adult autobiographers, that the depiction of his life is his own, we will reduce his identity performance to pure artifice or advertisem*nt. The questions Jacob’s videos raise around agency, consent, and creativity are important here. Sidonie Smith asks “Can there be a free, agentic space; and if so, where in the world can it be found?” (Manifesto 188). How much agency does Jacob have? Is there a liberating aspect in the act of putting personal technology into the hands of a child who can record his life, himself? And finally, how would an adult Jacob feel about his childhood self advertising these products online? Is this really automediality if Jacob does not fully understand what it means to publicly tell a mediated life story?These queries lead to concerns over child social media influence with regard to legal protection, marketing ethics, and user consent. The rise of “fan marketing” presents a nexus of stealth marketing to children by other children. Stealth marketing involves participants, in this case, fans, who do not know they are involved in an advertising scheme. For instance, the popular Minecon Minecraft conference event sessions have pushed their audience to develop the skills to become advocates and advertisers of their products, for example by showing audiences how to build a YouTube channel and sharing tips for growing a community. Targeting children in marketing ploys seems insidious. Marketing analyst Sandy Fleisher describes the value of outsourcing marketing to fan labourers:while Grand Theft Auto spent $120 million on marketing its latest release, Minecraft fans are being taught how to create and market promotional content themselves. One [example] is Minecraft YouTuber, SkydoesMinecraft. His nearly 7 million strong YouTube army, almost as big as Justin Bieber’s, means his daily videos enjoy a lot of views; 1,419,734,267 to be precise. While concerns about meaningful consent that practices like this raise have led some government bodies, and consumer and child protection groups to advocate restrictions for children, other critics have questioned the limits placed on children’s free expression by such restrictions. Tech commentator Larry Magid has written that, “In the interest of protecting children, we sometimes deny them the right to access material and express themselves.” Meghan M. Sweeney notes that “the surge in collaborative web models and the emphasis on interactivity—frequently termed Web 2.0—has meant that children are not merely targets of global media organizations” but have “multiple opportunities to be active, critical, and resistant producers”...and ”may be active agents in the production and dissemination of information” (68). Nevertheless, writes Sweeney, “corporate entities can have restrictive effects on consumers” (68), by for example, limiting imaginative play to the choices offered on a Disney website, or limiting imaginative topics to commercial products (toys, video games etc), as in YouTube review videos. Automedia is an important site from which to consider young children’s online practices in public spheres. Jacob’s performance is indeed meant to influence the choice to buy a toy, but it is also meant to influence others in knowing Jacob as an identity. He means to share and circulate his self. Julie Rak recalls Paul John Eakin’s claims about life-writing that the “process does not even occur at the level of writing, but at the level of living, so that identity formation is the result of narrative-building.” We view Jacob’s performance along these lines. Kinder Playtime offers him a constrained, parent-sanctioned (albeit commercialised) space for role-playing, a practice bound up with identity-formation in the life of most children. To think through the legality of recognising Jacob’s automedial content as his life, Rak is also useful: “In Eakin’s work in particular, we can see evidence of John Locke’s contention that identity is the expression of consciousness which is continuous over time, but that identity is also a product, one’s own property which is a legal entity”. We have argued that children are often caught in the paradox that defines them either as literate digital creators composing and circulating their online selves or as subjectified personas caught up in commercial advertising practices that use their lives for commercial gain. However, through close observation of individual children, one who we met and questioned in our study, Cayden, the other who we met through his mediated, commercialized, and circulated online persona, Jacob, we argue that child social influencers need consideration as autobiographical agents expressing themselves through automediality. As children create, edit, and grow digital traces of their lives and selves, how these texts are framed becomes increasingly important, in part because their future adult selves have such a stake in the matter: they are being formed through automedia. Moreover, these children’s coming of age may bring legal questions about the ownership of their automedial products such as YouTube videos, an enduring legacy they are leaving behind for their adult selves. Crucially, if we reduce identity performances such as unboxing, toy review videos, and other forms of children’s fan marketing to pure advertisem*nt, we cannot afford Jacob and other child influencers the agency that their self representation is legally and artistically their own.ReferencesAbidin, Crystal. “#familygoals: Family Influencers, Calibrated Amateurism, and Justifying Young Digital Labor.” Social Media + Society 3.2 (2017): 1-15.Andrejevic, Mark. “Privacy, Exploitation, and the Digital Enclosure.” Amsterdam Law Forum 1.4 (2009). <http://amsterdamlawforum.org/article/view/94/168>.Atkins, Bridgette, Isabel Pedersen, Shirley Van Nuland, and Samantha Reid. “A Glimpse into the Kids, Creative Storyworlds and Wearables Project: A Work-in-Progress.” ICET 60th World Assembly: Teachers for a Better World: Creating Conditions for Quality Education – Pedagogy, Policy and Professionalism. 2017. 49-60.Beer, David, and Roger Burrows. “Popular Culture, Digital Archives and the New Social Life of Data.” Theory, Culture & Society 30.4 (2013): 47–71.Brophy, Sarah, and Janice Hladki. Introduction. Pedagogy, Image Practices, and Contested Corporealities. Eds. Sarah Brophy and Janice Hladki. New York, NY: Routledge, 2014. 1-6.Craig, David, and Stuart Cunningham. “Toy Unboxing: Living in a(n Unregulated) Material World.” Media International Australia 163.1 (2017): 77-86.Fleischer, Sandy. “Watch Out for That Creeper: What Minecraft Teaches Us about Marketing.” Digital Marketing Magazine. 30 May 2014. <http://digitalmarketingmagazine.co.uk/articles/watch-out-for-that-creeper-what-minecraft-teaches-us-about-marketing>.James, Allison, and Adrian James. Key Concepts in Childhood Studies. London: Sage, 2012.Jenkins, Henry. The Childhood Reader. New York: NYU P, 1998.Jenks, Chris. Childhood. 2nd ed. London: Routledge, 2015.Kennedy, Ümit. "Exploring YouTube as a Transformative Tool in the 'The Power of MAKEUP!' Movement." M/C Journal 19.4 (2016). <http://journal.media-culture.org.au/index.php/mcjournal/article/view/1127>.———. “The Vulnerability of Contemporary Digital Autobiography” a/b: Auto/Biography Studies 32.2 (2017): 409-411.Kinder Playtime. “VTech Kidizoom Smart Watch DX Review by Kinder Playtime.” YouTube, 4 Nov. 2015. <https://www.youtube.com/watch?v=JaxCSjwZjcA&t=28s>.Magid, Larry. “Protecting Children Online Needs to Allow for Their Right to Free Speech.” ConnectSafely 29 Aug. 2014. <http://www.connectsafely.org/protecting-children-online-needs-to-allow-for-their-right-to-free-speech/>.Maguire, Emma. “Home, About, Shop, Contact: Constructing an Authorial Persona via the Author Website.” M/C Journal 17.3 (2014). <http://journal.media-culture.org.au/index.php/mcjournal/article/view/821>.Marsh, Jackie. “‘Unboxing’ Videos: Co-construction of the Child as Cyberflâneur.” Discourse: Studies in the Cultural Politics of Education 37.3 (2016): 369-380.Nansen, Bjorn. “Accidental, Assisted, Automated: An Emerging Repertoire of Infant Mobile Media Techniques.” M/C Journal 18.5 (2015). <http://journal.media-culture.org.au/index.php/mcjournal/article/view/1026>.———, and Benjamin Nicoll. “Toy Unboxing Videos and the Mimetic Production of Play.” Paper presented at the 18th Annual Conference of Internet Researchers (AoIR), Tartu, Estonia. 2017.Palfrey, John, and Urs Gasser. Born Digital: How Children Grow Up in a Digital Age. New York: Basic Books, 2016.Pedersen, Isabel, and Kristen Aspevig. “‘My Eyes Ended Up at My Fingertips, My Ears, My Nose, My Mouth’: Antoine, Autobiographical Documentary, and the Cinematic Depiction of a Blind Child Subject.” Biography: An Interdisciplinary Quarterly 34.4 (2011).Pedersen, Isabel, and Kristen Aspevig. “‘Swept to the Sidelines and Forgotten’: Cultural Exclusion, Blind Persons’ Participation, and International Film Festivals.” Canadian Journal of Disability Studies 3.3 (2014): 29-52.Rak, Julie. “First Person? Life Writing versus Automedia.” International Association for Biography and Autobiography Europe (IABA Europe). Vienna, Austria. 30 Oct. – 3 Nov. 2013.Smith, Sidonie. “The Autobiographical Manifesto.” Ed. Shirely Neuman. Autobiography and Questions of Gender. London: Frank Cass, 1991.———, and Julia Watson. Reading Autobiography. Minneapolis: U of Minnesota P, 2010.———. “Virtually Me: A Toolbox about Online Self-Presentation.” Identity Technologies: Constructing the Self Online. Eds. Anna Poletti and Julie Rak. Madison: U of Wisconsin P, 2014. 70-95.Sweeney, Meghan. “‘Where Happily Ever After Happens Every Day’: Disney's Official Princess Website and the Commodification of Play.” Jeunesse: Young People, Texts, Cultures 3.2 (2011): 66-87.Uhls, Yalda, and Particia Greenfield. “The Value of Fame: Preadolescent Perceptions of Popular Media and Their Relationship to Future Aspirations.” Developmental Psychology 48.2 (2012): 315-326.YouTube. “YouTube for Press.” 2017. <https://www.youtube.com/yt/about/press/>.

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Introduction: Bubbles and Sport The ephemeral materiality of bubbles – beautiful, spectacular, and distracting but ultimately fragile – when applied to protect or conserve in the interests of sport-media profit, creates conditions that exacerbate existing inequalities in sport and society. Bubbles are usually something to watch, admire, and chase after in their brief yet shiny lives. There is supposed to be, technically, nothing inside them other than one or more gasses, and yet we constantly refer to people and objects being inside bubbles. The metaphor of the bubble has been used to describe the life of celebrities, politicians in purpose-built capital cities like Canberra, and even leftist, environmentally activist urban dwellers. The metaphorical and material qualities of bubbles are aligned—they cannot be easily captured and are liable to change at any time. In this article we address the metaphorical sporting bubble, which is often evoked in describing life in professional sport. This is a vernacular term used to capture and condemn the conditions of life of elite sportspeople (usually men), most commonly after there has been a sport-related scandal, especially of a sexual nature (Rowe). It is frequently paired with connotatively loaded adjectives like pampered and indulged. The sporting bubble is rarely interrogated in academic literature, the concept largely being left to the media and moral entrepreneurs. It is represented as involving a highly privileged but also pressurised life for those who live inside it. A sporting bubble is a world constructed for its most prized inhabitants that enables them to be protected from insurgents and to set the terms of their encounters with others, especially sport fans and disciplinary agents of the state. The Covid-19 pandemic both reinforced and reconfigured the operational concept of the bubble, re-arranging tensions between safety (protecting athletes) and fragility (short careers, risks of injury, etc.) for those within, while safeguarding those without from bubble contagion. Privilege and Precarity Bubble-induced social isolation, critics argue, encourages a loss of perspective among those under its protection, an entitled disconnection from the usual rules and responsibilities of everyday life. For this reason, the denizens of the sporting bubble are seen as being at risk to themselves and, more troublingly, to those allowed temporarily to penetrate it, especially young women who are first exploited by and then ejected from it (Benedict). There are many well-documented cases of professional male athletes “behaving badly” and trying to rely on institutional status and various versions of the sporting bubble for shelter (Flood and Dyson; Reel and Crouch; Wade). In the age of mobile and social media, it is increasingly difficult to keep misbehaviour in-house, resulting in a slew of media stories about, for example, drunkenness and sexual misconduct, such as when then-Sydney Roosters co-captain Mitchell Pearce was suspended and fined in 2016 after being filmed trying to force an unwanted kiss on a woman and then simulating a lewd act with her dog while drunk. There is contestation between those who condemn such behaviour as aberrant and those who regard it as the conventional expression of youthful masculinity as part of the familiar “boys will be boys” dictum. The latter naturalise an inequitable gender order, frequently treating sportsmen as victims of predatory women, and ignoring asymmetries of power between men and women, especially in hom*osocial environments (Toffoletti). For those in the sporting bubble (predominantly elite sportsmen and highly paid executives, also mostly men, with an array of service staff of both sexes moving in and out of it), life is reflected for those being protected via an array of screens (small screens in homes and indoor places of entertainment, and even smaller screens on theirs and others’ phones, as well as huge screens at sport events). These male sport stars are paid handsomely to use their skill and strength to perform for the sporting codes, their every facial expression and bodily action watched by the media and relayed to audiences. This is often a precarious existence, the usually brief career of an athlete worker being dependent on health, luck, age, successful competition with rivals, networks, and club and coach preferences. There is a large, aspirational reserve army of athletes vying to play at the elite level, despite risks of injury and invasive, life-changing medical interventions. Responsibility for avoiding performance and image enhancing drugs (PIEDs) also weighs heavily on their shoulders (Connor). Professional sportspeople, in their more reflective moments, know that their time in the limelight will soon be up, meaning that getting a ticket to the sporting bubble, even for a short time, can make all the difference to their post-sport lives and those of their families. The most vulnerable of the small minority of participants in sport who make a good, short-term living from it are those for whom, in the absence of quality education and prior social status, it is their sole likely means of upward social mobility (Spaaij). Elite sport performers are surrounded by minders, doctors, fitness instructors, therapists, coaches, advisors and other service personnel, all supporting athletes to stay focussed on and maximise performance quality to satisfy co-present crowds, broadcasters, sponsors, sports bodies and mass media audiences. The shield offered by the sporting bubble supports the teleological win-at-all-costs mentality of professional sport. The stakes are high, with athlete and executive salaries, sponsorships and broadcasting deals entangled in a complex web of investments in keeping the “talent” pivotal to the “attention economy” (Davenport and Beck)—the players that provide the content for sale—in top form. Yet, the bubble cannot be entirely secured and poor behaviour or performance can have devastating effects, including permanent injury or disability, mental illness and loss of reputation (Rowe, “Scandals and Sport”). Given this fragile materiality of the sporting bubble, it is striking that, in response to the sudden shutdown following the economic and health crisis caused by the 2020 global pandemic, the leaders of professional sport decided to create more of them and seek to seal the metaphorical and material space with unprecedented efficiency. The outcome was a multi-sided tale of mobility, confinement, capital, labour, and the gendering of sport and society. The Covid-19 Gilded Cage Sociologists such as Zygmunt Bauman and John Urry have analysed the socio-politics of mobilities, whereby some people in the world, such as tourists, can traverse the globe at their leisure, while others remain fixed in geographical space because they lack the means to be mobile or, in contrast, are involuntarily displaced by war, so-called “ethnic cleansing”, famine, poverty or environmental degradation. The Covid-19 global pandemic re-framed these matters of mobilities (Rowe, “Subjecting Pandemic Sport”), with conventional moving around—between houses, businesses, cities, regions and countries—suddenly subjected to the imperative to be static and, in perniciously unreflective technocratic discourse, “socially distanced” (when what was actually meant was to be “physically distanced”). The late-twentieth century analysis of the “risk society” by Ulrich Beck, in which the mysterious consequences of humans’ predation on their environment are visited upon them with terrifying force, was dramatically realised with the coming of Covid-19. In another iteration of the metaphor, it burst the bubble of twenty-first century global sport. What we today call sport was formed through the process of sportisation (Maguire), whereby hyper-local, folk physical play was reconfigured as multi-spatial industrialised sport in modernity, becoming increasingly reliant on individual athletes and teams travelling across the landscape and well over the horizon. Co-present crowds were, in turn, overshadowed in the sport economy when sport events were taken to much larger, dispersed audiences via the media, especially in broadcast mode (Nicholson, Kerr, and Sherwood). This lucrative mediation of professional sport, though, came with an unforgiving obligation to generate an uninterrupted supply of spectacular live sport content. The pandemic closed down most sports events and those that did take place lacked the crucial participation of the co-present crowd to provide the requisite event atmosphere demanded by those viewers accustomed to a sense of occasion. Instead, they received a strange spectacle of sport performers operating in empty “cathedrals”, often with a “faked” crowd presence. The mediated sport spectacle under the pandemic involved cardboard cut-out and sex doll spectators, Zoom images of fans on large screens, and sampled sounds of the crowd recycled from sport video games. Confected co-presence produced simulacra of the “real” as Baudrillardian visions came to life. The sporting bubble had become even more remote. For elite sportspeople routinely isolated from the “common people”, the live sport encounter offered some sensory experience of the social – the sounds, sights and even smells of the crowd. Now the sporting bubble closed in on an already insulated and insular existence. It exposed the irony of the bubble as a sign of both privileged mobility and incarcerated athlete work, both refuge and prison. Its logic of contagion also turned a structure intended to protect those inside from those outside into, as already observed, a mechanism to manage the threat of insiders to outsiders. In Australia, as in many other countries, the populace was enjoined by governments and health authorities to help prevent the spread of Covid-19 through isolation and immobility. There were various exceptions, principally those classified as essential workers, a heterogeneous cohort ranging from supermarket shelf stackers to pharmacists. People in the cultural, leisure and sports industries, including musicians, actors, and athletes, were not counted among this crucial labour force. Indeed, the performing arts (including dance, theatre and music) were put on ice with quite devastating effects on the livelihoods and wellbeing of those involved. So, with all major sports shut down (the exception being horse racing, which received the benefit both of government subsidies and expanding online gambling revenue), sport organisations began to represent themselves as essential services that could help sustain collective mental and even spiritual wellbeing. This case was made most aggressively by Australian Rugby League Commission Chairman, Peter V’landys, in contending that “an Australia without rugby league is not Australia”. In similar vein, prominent sport and media figure Phil Gould insisted, when describing rugby league fans in Western Sydney’s Penrith, “they’re lost, because the football’s not on … . It holds their families together. People don’t understand that … . Their life begins in the second week of March, and it ends in October”. Despite misgivings about public safety and equality before the pandemic regime, sporting bubbles were allowed to form, re-form and circulate. The indefinite shutdown of the National Rugby League (NRL) on 23 March 2020 was followed after negotiation between multiple entities by its reopening on 28 May 2020. The competition included a team from another nation-state (the Warriors from Aotearoa/New Zealand) in creating an international sporting bubble on the Central Coast of New South Wales, separating them from their families and friends across the Tasman Sea. Appeals to the mental health of fans and the importance of the NRL to myths of “Australianness” notwithstanding, the league had not prudently maintained a financial reserve and so could not afford to shut down for long. Significant gambling revenue for leagues like the NRL and Australian Football League (AFL) also influenced the push to return to sport business as usual. Sport contests were needed in order to exploit the gambling opportunities – especially online and mobile – stimulated by home “confinement”. During the coronavirus lockdowns, Australians’ weekly spending on gambling went up by 142 per cent, and the NRL earned significantly more than usual from gambling revenue—potentially $10 million above forecasts for 2020. Despite the clear financial imperative at play, including heavy reliance on gambling, sporting bubble-making involved special licence. The state of Queensland, which had pursued a hard-line approach by closing its borders for most of those wishing to cross them for biographical landmark events like family funerals and even for medical treatment in border communities, became “the nation's sporting hub”. Queensland became the home of most teams of the men’s AFL (notably the women’s AFLW season having been cancelled) following a large Covid-19 second wave in Melbourne. The women’s National Netball League was based exclusively in Queensland. This state, which for the first time hosted the AFL Grand Final, deployed sport as a tool in both national sports tourism marketing and internal pre-election politics, sponsoring a documentary, The Sporting Bubble 2020, via its Tourism and Events arm. While Queensland became the larger bubble incorporating many other sporting bubbles, both the AFL and the NRL had versions of the “fly in, fly out” labour rhythms conventionally associated with the mining industry in remote and regional areas. In this instance, though, the bubble experience did not involve long stays in miners’ camps or even the one-night hotel stopovers familiar to the popular music and sport industries. Here, the bubble moved, usually by plane, to fulfil the requirements of a live sport “gig”, whereupon it was immediately returned to its more solid bubble hub or to domestic self-isolation. In the space created between disciplined expectation and deplored non-compliance, the sporting bubble inevitably became the scrutinised object and subject of scandal. Sporting Bubble Scandals While people with a very low risk of spreading Covid-19 (coming from areas with no active cases) were denied entry to Queensland for even the most serious of reasons (for example, the death of a child), images of AFL players and their families socialising and enjoying swimming at the Royal Pines Resort sporting bubble crossed our screens. Yet, despite their (players’, officials’ and families’) relative privilege and freedom of movement under the AFL Covid-Safe Plan, some players and others inside the bubble were involved in “scandals”. Most notable was the case of a drunken brawl outside a Gold Coast strip club which led to two Richmond players being “banished”, suspended for 10 matches, and the club fined $100,000. But it was not only players who breached Covid-19 bubble protocols: Collingwood coaches Nathan Buckley and Brenton Sanderson paid the $50,000 fine imposed on the club for playing tennis in Perth outside their bubble, while Richmond was fined $45,000 after Brooke Cotchin, wife of team captain Trent, posted an image to Instagram of a Gold Coast day spa that she had visited outside the “hub” (the institutionally preferred term for bubble). She was subsequently distressed after being trolled. Also of concern was the lack of physical distancing, and the range of people allowed into the sporting bubble, including babysitters, grandparents, and swimming coaches (for children). There were other cases of players being caught leaving the bubble to attend parties and sharing videos of their “antics” on social media. Biosecurity breaches of bubbles by players occurred relatively frequently, with stern words from both the AFL and NRL leaders (and their clubs) and fines accumulating in the thousands of dollars. Some people were also caught sneaking into bubbles, with Lekahni Pearce, the girlfriend of Swans player Elijah Taylor, stating that it was easy in Perth, “no security, I didn’t see a security guard” (in Barron, Stevens, and Zaczek) (a month later, outside the bubble, they had broken up and he pled guilty to unlawfully assaulting her; Ramsey). Flouting the rules, despite stern threats from government, did not lead to any bubble being popped. The sport-media machine powering sporting bubbles continued to run, the attendant emotional or health risks accepted in the name of national cultural therapy, while sponsorship, advertising and gambling revenue continued to accumulate mostly for the benefit of men. Gendering Sporting Bubbles Designed as biosecurity structures to maintain the supply of media-sport content, keep players and other vital cogs of the machine running smoothly, and to exclude Covid-19, sporting bubbles were, in their most advanced form, exclusive luxury camps that illuminated the elevated socio-cultural status of sportsmen. The ongoing inequalities between men’s and women’s sport in Australia and around the world were clearly in evidence, as well as the politics of gender whereby women are obliged to “care” and men are enabled to be “careless” – or at least to manage carefully their “duty of care”. In Australia, the only sport for women that continued during the height of the Covid-19 lockdown was netball, which operated in a bubble that was one of sacrifice rather than privilege. With minimum salaries of only $30,000 – significantly less than the lowest-paid “rookies” in the AFL – and some being mothers of small children and/or with professional jobs juggled alongside their netball careers, these elite sportswomen wanted to continue to play despite the personal inconvenience or cost (Pavlidis). Not one breach of the netballers out of the bubble was reported, indicating that they took their responsibilities with appropriate seriousness and, perhaps, were subjected to less scrutiny than the sportsmen accustomed to attracting front-page headlines. National Netball League (also known after its Queensland-based naming rights sponsor as Suncorp Super Netball) players could be regarded as fortunate to have the opportunity to be in a bubble and to participate in their competition. The NRL Women’s (NRLW) Premiership season was also completed, but only involved four teams subject to fly in, fly out and bubble arrangements, and being played in so-called curtain-raiser games for the NRL. As noted earlier, the AFLW season was truncated, despite all the prior training and sacrifice required of its players. Similarly, because of their resource advantages, the UK men’s and boy’s top six tiers of association football were allowed to continue during lockdown, compared to only two for women and girls. In the United States, inequalities between men’s and women’s sports were clearly demonstrated by the conditions afforded to those elite sportswomen inside the Women’s National Basketball Association (WNBA) sport bubble in the IMG Academy in Florida. Players shared photos of rodent traps in their rooms, insect traps under their mattresses, inedible food and blocked plumbing in their bubble accommodation. These conditions were a far cry from the luxury usually afforded elite sportsmen, including in Florida’s Walt Disney World for the men’s NBA, and is just one of the many instances of how gendered inequality was both reproduced and exacerbated by Covid-19. Bursting the Bubble As we have seen, governments and corporate leaders in sport were able to create material and metaphorical bubbles during the Covid-19 lockdown in order to transmit stadium sport contests into home spaces. The rationale was the importance of sport to national identity, belonging and the routines and rhythms of life. But for whom? Many women, who still carry the major responsibilities of “care”, found that Covid-19 intensified the affective relations and gendered inequities of “home” as a leisure site (Fullagar and Pavlidis). Rates of domestic violence surged, and many women experienced significant anxiety and depression related to the stress of home confinement and home schooling. During the pandemic, women were also more likely to experience the stress and trauma of being first responders, witnessing virus-related sickness and death as the majority of nurses and care workers. They also bore the brunt of much of the economic and employment loss during this time. Also, as noted above, livelihoods in the arts and cultural sector did not receive the benefits of the “bubble”, despite having a comparable claim to sport in contributing significantly to societal wellbeing. This sector’s workforce is substantially female, although men dominate its senior roles. Despite these inequalities, after the late March to May hiatus, many elite male sportsmen – and some sportswomen - operated in a bubble. Moving in and out of them was not easy. Life inside could be mentally stressful (especially in long stays of up to 150 days in sports like cricket), and tabloid and social media troll punishment awaited those who were caught going “over the fence”. But, life in the sporting bubble was generally preferable to the daily realities of those afflicted by the trauma arising from forced home confinement, and for whom watching moving sports images was scant compensation for compulsory immobility. The ethical foundation of the sparkly, ephemeral fantasy of the sporting bubble is questionable when it is placed in the service of a voracious “media sports cultural complex” (Rowe, Global Media Sport) that consumes sport labour power and rolls back progress in gender relations as a default response to a global pandemic. Covid-19 dramatically highlighted social inequalities in many areas of life, including medical care, work, and sport. For the small minority of people involved in sport who are elite professionals, the only thing worse than being in a sporting bubble during the pandemic was not being in one, as being outside precluded their participation. Being inside the bubble was a privilege, albeit a dubious one. But, as in wider society, not all sporting bubbles are created equal. Some are more opulent than others, and the experiences of the supporting and the supported can be very different. The surface of the sporting bubble may be impermanent, but when its interior is opened up to scrutiny, it reveals some very durable structures of inequality. Bubbles are made to burst. They are, by nature, temporary, translucent structures created as spectacles. As a form of luminosity, bubbles “allow a thing or object to exist only as a flash, sparkle or shimmer” (Deleuze, 52). In echoing Deleuze, Angela McRobbie (54) argues that luminosity “softens and disguises the regulative dynamics of neoliberal society”. The sporting bubble was designed to discharge that function for those millions rendered immobile by home confinement legislation in Australia and around the world, who were having to deal with the associated trauma, risk and disadvantage. 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