Добірка наукової літератури з теми "Disability, happiness, accessibility, working status"

The Working Group on Accessibility and Disability (WGAD) of the American Astronomical Society published a comprehensive list of accessibility recommendations for professional astronomy journals, based on the first-hand experience of both higher education students and professional astronomers. The recommendations include accessibility strategies intended to improve access for a wide range of disabled and neurodiverse readers, with particular attention to the way readers with visual, motor, and cognitive disabilities cope with information in a digital interface. In this paper we use the tools of critical discourse analysis (CDA) to compare the recommended strategies to the digital discursive modes currently employed by leading astronomy journals. Raters analyzed discourse modes for a sample of 256 astronomy journal articles, including the usage of linguistic indicators, digital architecture, and information display. We identify emergent categories of access barriers faced by disabled astronomers, and identify strategies in the journal papers addressing those emergent categories. We compare the discourse modes currently used in astronomy publications with the access barriers and recommended strategies described by the WGAD document. Our analysis found that discourses in astronomical publications were typically constituted with the expectation of various shared commonalities between the author and the reader, including: 1. Same sensorial modality of interaction; 2. Same experiential knowledge as authors; 3. Same access to information as authors; 4. Same linguistic knowledge as authors; 5. Same cognitive strategies as authors; 6. Same socioeconomic status and background. This case study may serve as a baseline for future studies on how inaccessible textual discourse, digital architecture, and digital display in STEM journals enhance professional inequalities. Examining how current standard journal standards impact the transition to different professional career stages would help to identify alternate discursive strategies which would improve accessibility.

Longitudinal data on the functioning of adults referred for possible autism as children are sparse and possibly different from datasets consisting of adult clinical referrals. A total of 123 young adults, mean age of 26, referred for neurodevelopmental disorders in early childhood were categorized into three outcome groups: autism spectrum disorder (ASD) diagnosis at some point and current intelligence quotient (IQ) ⩾ 70 (Ever ASD-Higher IQ), ever ASD and current IQ < 70 (Ever ASD-Lower IQ), and individuals who never received an ASD diagnosis (Never ASD). Independence and well-being were assessed through direct testing, questionnaires, and interviews. Verbal IQ, beyond intellectual disability status, accounted for group differences in employment; autistic features (Autism Diagnostic Observation Schedule Calibrated Severity Score) were uniquely related to adaptive skills and friendships. In many ways, the Never ASD group had similar outcomes compared to the ASD groups. However, lower well-being and fewer positive emotions were related to ASD diagnosis across IQ. The Ever ASD-Lower IQ group had the highest levels of irritability, hyperactivity, and medications. Families played a major role in supporting adults with and without ASD at all intellectual levels. Realistic ways of increasing independence should be developed through working with adults and their families, while acknowledging the contribution of individual differences in mental health, intelligence, and autism symptoms across neurodevelopmental disorders. Lay abstract It is important to better understand how adults with autism are functioning in adulthood. Studies that have tracked individuals across the lifespan can help identify developmental factors influence differences in adult outcomes. The present study examines the independence, well-being, and functioning of 123 adults that have been closely followed since early childhood. Autism diagnosis and cognitive assessments were given frequently throughout childhood and during adulthood. We examined differences between adults who had received an autism diagnosis at some point with higher cognitive abilities (Ever ASD-High IQ) and lower cognitive abilities (Ever ASD-Low IQ), as well as adults who never received a diagnosis of autism in the course of the study (Never ASD). We found that autistic features specifically related to adaptive skills and friendships, and verbal intelligence related to work outcomes. In many ways, the Never ASD group had similar outcomes compared to the ASD groups. However, adults with ASD tended to have lower well-being and fewer positive emotions. Families played a major role in supporting adults with and without ASD at all intellectual levels. The findings suggest that realistic ways of increasing independence need to be developed by working with adults and their families, while acknowledging the contribution of individual differences in mental health, intelligence and autism symptoms across neurodevelopmental disorders.

performance of current athletes by building confidence and contributing to favorable conditions of retired athletes. This study investigated the influences of the years of retirement and physical self-inventory on human sufferings experienced by the retired athletes. Based on the literature review, there were limited empirical studies on the conditions of former athletes after years of retirement, their glory, physical inventory, and sufferings, and the relationships among these characteristics. Using mixed research methods, this research studied the conditions of retired athletes in Metro Manila. The study confirmed that physical self-inventory influenced post-retirement human suffering. Post-retirement athletic identity, financial status and decisions to voluntary retire were observed to be the most prevalent experiences related to human suffering. 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Abstract Objectives We will actively explore ways of building bridges between people with disabilities and the non-disabled community. We aim to show an inclusive society will necessitate significant changes in ways of working with people with disability. Organization The workshop is divided into 2 parts. In Part 1 through two 15 minute presentations we offer illustrations of participatory practice with people with disabilities and families taken from different, but allied sectors. Presentation 1: ParticipaTIC is an accessible transnational on-line training platform for disabled persons organization leaders. Specifically we will address how challenges of designing an accessible platform were met while highlighting outstanding tensions between on-line accessibility and other dimensions of digital design. Such issues are relevant not just to on-line instruction, but also to creating a truly inclusive society. Presentation 2: This describes how the European Academy of Childhood Disability has picked up the gauntlet of including families and organized a special 3 hour family session at their annual conference in Paris. Focus group style activities have been designed to a) enable the expression of families with respect to what matters for the happiness and well-being of their children with disability b) enhance the participation of families to improve knowledge, practice and understanding between families and health, social and educational professionals. Building on the Part 1 presentations, Part 2 of the workshop will involve a skills building activity (50 mins). This has been extensively used in disability and discrimination training at EHESP with master students, and civil servants. It uses role-play to raise awareness of the rights and needs of people with disabilities. Participants draw plans for redesigning hospital car parking to take into account the needs of all people that use the hospital. (This may be considered as a microcosm of society.) In a first phase (20 mins) groups of 6-10 participants brainstorm. Certain participants are then asked to step into the shoes of disabled people and work with others to produce plans. (20 mins) Feedback is offered on the process and the plan. (10 mins) In conclusion (10 mins), participants will briefly be asked to suggest improvements for the accessibility of a scientific conference such as EUPHA. Conclusion: Fully inclusive practice may be in tension with taken-for-granted habits. The extent of adaptations necessary may be surprising to non-disabled people. They go beyond using sign-language, induction loops, braille, and speech synthesis. They also include Easy to Read & Understand for people with intellectual disabilities. Beyond such adjustments challenges for including people with disabilities within training, meetings, and participatory fora are raised. We suggest that our 3 examples illustrate the challenge facing society and social services in co-designing truly inclusive practice and environments. Key messages Through placing people in the shoes of people with disabilities, participants will come to learn that inclusion also impacts on the very process of consultation and participation. Inclusion will involve creating accessible and participatory environments in order to offer equal opportunities for learning and participation adapted to different groups and capacities.

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. Closed Captioning: Subtitling, Stenography, and the Digital Convergence of Text with Television. 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>.

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. 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The autobiographical documentary film “18q – a valuable life”, is one attempt to redefine the place of disability in contemporary western society. My work presents some key moments in my life and that of my family since the birth of my youngest child, Allycia in 1995. Allycia was born with a rare genetic condition affecting the 18th chromosome resulting in her experiencing the world somewhat differently to the rest of the family. The condition, which manifests in a myriad of ways with varying levels of severity, affects individuals’ physical and intellectual development (Chromosome 18, n. pag.). While the film outlines the condition and Allycia’s medical history, the work is primarily concerned with the experiences of the family and offering an alternate story of disability as “other”. Drawing on Rosemarie Garland Thomson’s notion of shape structuring story ("Shape") and Margrit Shildrick’s discussion of becoming vulnerable as theoretical foundations, I reflect on how the making of the film has challenged my previously held views about disability and ultimately about myself. The Film & Disability “18q – a valuable life” introduces a new, previously “invisible” shape in the form of bodies coded as Chromosome 18 to the screen. The initial impulse to make the film was driven by a need to provide a media presence for a rare genetic condition known collectively as Chromosome 18 (Chromosome 18, n. pag.) where previously there was none. This impulse was fuelled by a desire to tell a different story, our story; a story about what life can be like when a child with intellectual and physical impairment is born into one’s family. This different story is, in Garland Thompson’s terms, one that “insists that shape structures story” (114) and endeavours to contribute to recasting disability “as an occasion for exuberant flourishing” (Garland Thompson 114). The categorisation and depiction of people with disability in western society’s media have been scrutinised by many writers including Mitchell and Snyder ("Representations"; "Visual"), Oliver and Norden who point out that negatively charged stereotypical representations of the disabled continue to proliferate in the mediasphere. Englandkennedy for example examines the portrayal of the new disability classification Attention Deficit Disorder and is highly critical of its representation in programs such as The Simpsons (1989-2008) and films such as Pecker (1998). She asserts, “few media representations of ADD exist and most are inaccurate; they reflect and reinforce social concerns and negative stereotypes” (117) to the detriment of the condition being better understood by their audiences. However, Englandkennedy also identifies the positive possibilities for informed media representations that offer new models and stories about disability, citing works such as Children of a Lesser God (1986) and The Bone Collector (1999) as examples of shifts in fictional story telling modes. There are also shifts in recent documentary films such as My Flesh and Blood (2004), Tarnation (2003) and Murderball (2005) which provide insightful, powerful and engaging stories about disability. I suggest however that they still rely upon the stereotypical modes identified by numerous disability studies scholars. For example, Darke’s (n. pag.) heroic mother figure and disabled outsider and victim are depicted in the extreme in My Flesh and Blood and Tarnation respectively, whilst Murderball, as powerful as it is, still constructs disability as “something” to be overcome and is celebrated via the character construction of the “super-crip” (Englandkennedy 99). These stories are vital and insightful developments in challenging and re-shaping the many stigmas associated with disability, but they remain, for the most part, inaccessible to me in terms of my place in the world as a person parenting a little girl with physical and intellectual impairment. Able to Live The opening of the film features footage of my two older children Adam and Kristina, as “normal”, active children. These idyllic images are interrupted by an image of me by Allycia’s bedside where, as an infant, she is attached to life saving machines. She is at once “othered” to her active, healthy siblings. Her survival was reliant, and remains so, albeit to a much lesser extent, upon the intrusion of machines, administering of medication and the intervention of strangers. The prospect of her dying rendered me powerless, vulnerable; I lacked the means to sustain her life. To hand over my child to strangers, knowing they would carve her tiny chest open, suspend the beating of her already frail heart and attempt to repair it, was to surrender to the unknown without guarantees; the only surety being she would cease to be if I did not. Allycia survived surgery. This triumph however, was recast in the shadow of abnormality as outlined in the film when genetic screening of her DNA revealed she had been born with a rare genetic abnormality coded as 18q23 deletion. This information meant she was missing a part of her eighteenth chromosome and the literature available at that time (in 1997) gave little cause for hope – she was physically and intellectually retarded. This news, delivered to me by a genetic counsellor, was coupled with advice to ensure my daughter enjoyed “quality of life”. The words, “rare genetic abnormality” and “retarded” succeeded in effectively “othering” Allycia to me, to my other two children and the general population. My knowledge and experience with people with genetic abnormalities was minimal and synonymous with loss, sadness, suffering and sacrifice and had little to do with quality of life. She was frail and I was confronted with the loss of a “normal” child that would surely result in the “loss” of my own life when framed within this bleak, imagined life that lay before me; her disability, her otherness, her vulnerability signalled my own. As unpalatable as it is for me to use the word monstrous with reference to my daughter, Shildrick’s work, aligning the disabled experience with the monstrous and the possibility of becoming via a refiguring of vulnerability, resonates somewhat with my encounter with my vulnerable self. Schildrick proposes that “any being who traverses the liminal spaces that evade classification takes on the potential to confound normative identity” (6). As Allycia’s mother, I find Shildrick’s assertion that the monstrous “remains excessive of any category, it always claims us, always touches us and implicates us in its own becoming” (6) is particularly pertinent. This is not to say that Schildrick’s notion of the monstrous is an unproblematic one. Indeed Kaul reminds us that: to identify disabled bodies too closely with the monstrous seems to risk leaving us out of universal, as well as particular, experience, entirely in the figurative. (11) Schildrick’s notion of the universality of vulnerability however is implicit in her reference to that which confounds and disturbs us, and it is an important one. Clearly Allycia’s arrival has claimed me, touched me; I am intimately implicated in her becoming. I could not have anticipated however the degree to which she has been intertwined with my own becoming. Her arrival, in retrospect crystallised for me Shildrick’s proposition that “we are already without boundaries, already vulnerable” (6). The film does not shy away from the difficulties confronting Allycia and my family and other members of the chromosome 18 community. I have attempted however to portray our environment and culture as contributing factors and challenge the myth of medicine as a perfect science or answer to the myriad of challenges of navigating life with a disability in contemporary society. This was a difficult undertaking as I did not want the work to degenerate into one that was reliant on blame or continued in the construction of people with disability as victims. I have been mindful of balancing the sometimes painful reality of our lives with those moments that have brought us a sense of accomplishment or delight. Part of the delight of our lives is exemplified when my sister Julie articulates the difference in Allycia’s experiences as compared to her own nine year old daughter, Lydia. Julie succeeds in valorising Allycia’s freedom to be herself by juxtaposing her own daughter’s preoccupation with “what others think” and her level of self consciousness in social contexts. Julie also highlights Lydia’s awareness of Allycia’s difference, via narration over footage of Lydia assisting Allycia, and asserts that this role of becoming a helper is a positive attribute for Lydia’s development. Able to Laugh Including humour in the film was a vital ingredient in the reframing of disability in our lives and is employed as a device to enhance the accessibility of the text to an audience. The film is quite dialogue driven in furnishing background knowledge and runs the risk at times, when characters reveal some of their more painful experiences, of degenerating into a tale of despair. Humour acts as device to lift the overall mood of the film. The humour is in part structured by my failures and incompetence – particularly in reference to my command (or rather lack) of public transport both in Australia and overseas. While the events depicted did occur – my missing a ferry and losing our way in the United States – their inclusion in the film is used as a device to show me, as the able bodied person; the adult ‘able’ mother, with flaws and all. This deliberate act endeavours to re-shape the “heroic mother” stereotype. A wistful form of humour also emerges when my vulnerability becomes apparent in a sequence where I break down and cry, feeling the burden in that moment of the first eleven years of Allycia’s life. Here Allycia as carer emerges as she uses our favourite toy to interrupt my crying, succeeding in turning my tears into a gentle smile. Her maturity and ability to connect with my sadness and the need to make me feel better are apparent and serve to challenge the status of intellectual impairment as burden. This sequence also served to help me laugh at myself in quite a different way after spending many hours confronted with the many faces that are mine during the editing process. I experienced a great deal of discomfort in front of the camera due to feelings of self-consciousness and being on display. That discomfort paled into insignificance when I then had to watch myself on the monitor and triggered a parallel journey alongside the making of the film as I continued to view myself over time. Those images showing my distress, my face contorted with tears as I struggled to maintain control made me cry for quite a while afterwards. I felt a strange empathy for myself – as if viewing someone else’s pain although it was mine, simultaneously the same and other. Chris Sarra’s “notion of a common core otherness as constituting the essence of human being” is one that resonates closely with these aspects. Sarra reinterprets Bhaskar (5) arguing that “we should regard the same as a tiny ripple on the sea of otherness”, enabling us “to enshrine the right to be other” capturing “something of the wonder and strangeness of being” (5). Over time I have become used to seeing these images and have laughed at myself. I believe becoming accustomed to seeing myself, aging as I have during these years, has been a useful process. I have become "more" comfortable with seeing that face, my face in another time. In essence I have been required to sit with my own vulnerabilities and have gained a deeper acceptance of my own fragility and in a sense, my own mortality. This idea of becoming “used to”, and more accepting of the images I was previously uncomfortable with has given me a renewed hope for our community in particular, the disability community in general. My experience I believe indicates the potential for us, as we become more visible, to be accepted in our difference. Critical to this is the need for us to be seen in the fullness of human experience, including our capacity to experience laughter and love and the delight these experiences bring to our lives and those around us. These experiences are captured exquisitely when Allycia sees her newfound chromosome 18 friends, Martin and Kathryn kissing one another. She reacts in much the same way I expect other little girls might in a similar situation. She is simultaneously “grossed out” and intrigued, much to our delight. It is a lovely spontaneous moment that says much in the space of a minute about Martin and Kathryn, and about Allycia’s and my relationship. For me there is a beauty, there is honesty and there is transparency. Able to Love My desire for this film is similar to Garland Thomson’s desire for her writing to “provide access to some elements of my community to both disabled and non disabled audiences alike” (122). I felt part of the key to making the film “work” was ensuring it remained accessible to as wide an audience as possible and began with a naive optimism that the film could defy stereotypical story lines. I discovered this accessibility I desired was reliant upon the traditions of storytelling; language, the construction of character and the telling of a journey demanded an engagement in ways we collectively identify and understand (Campbell). I found our lives at times, became stereotypical. I had moments of feeling like a victim; Allycia as a dancer could well be perceived as a “supercrip” and the very act of making a film about my daughter could be viewed as a heroic one. The process resulted in my surrendering to working within a framework that relies upon, all too often, character construction that is stereotypical. I felt despondent many times upon realising the emergence of these in the work, but held onto the belief that something new could be shown by exposing “two narrative currents which are seldom included in the usual stories we tell about disability: sexuality and community” (Garland Thompson 114). The take on sexuality is a gentle one, concerned with emerging ideologies surrounding sexuality in our community. This is a new phenomenon in terms of the “place” of sexuality and intimacy within our community. One of our parents featured in the film makes this clear when he explains that the community is watching a new romance blossom “with interest” (18q) and that this is a new experience for us as a whole. In focussing on sexuality, my intention is to provoke discussion about perceptions surrounding people categorised as intellectually impaired and their capacity to love and build intimate relationships and the possibilities this presents for the chromosome 18 community. The theme of community features significantly in the film as audiences become privy to conferences attended by, in one instance, 300 people. My intention here is to “make our mark”. There has been no significant filmic presence of Chromosome 18. The condition is rare, but when those affected by it are gathered together, a significantly “bigger picture” of is presented where previously there was none. The community is a significant support network for families and is concerned with becoming empowered by knowledge, care and advocacy. The transcendence of global and cultural boundaries becomes apparent in the film as these differences become diminished in light of our greater need to connect with each others’ experiences in life as, or with, people born with genetic difference. The film highlights the supportive, educated and joyful “shape” of our community. In presenting our community I hope too that western society’s preoccupation with normativity and ableism (Goggin) is effectively challenged. In presenting a version of life that “destabilises the system and points up its inadequacy as a model of existential relations”, I am also demonstrating what Shildrick calls “unreflected excess, that which is other than the same” (105). The most significant shift for me has been to refigure my ideas about Allycia as an adult. When I was given her medical prognosis I believed she would be my responsibility for the rest of my life. I did not hold a lot of hope for the future and could not have possibly entertained the idea that she may live independently or heaven forbid, she may enter into an intimate adult relationship; such was my experience with the physically and intellectually impaired. Thankfully I have progressed. This progression has been, in part, due to attending a Chromosome 18 conference in Boston in 2007 where we met Kathryn and Martin, a young couple in the early stages of building a relationship. This is a new phenomenon in our community. Kathryn and Martin were born with chromosome 18 deletions. Meeting them and their families has signalled new possibilities for our children and their opportunities and their right to explore intimate adult relationships. Their relationship has given me confidence to proceed with an open mind regarding Allycia’s adulthood and sexuality. Conclusion The very act of making the film was one that would inevitably render me vulnerable. Placing myself before the camera has given me a new perspective on vulnerability as a state that simultaneously disempowers and empowers me. I could argue this process has given me a better understanding of Allycia’s place in the world, but to do this is to deny our differences. Instead I believe the experience has given me a renewed perspective in embracing our differences and has also enabled me to see how much we are alike. My understanding of myself as both “able” and “othered”, and the ensuing recognition of, and encounter with, my vulnerable self have in some measure, come as a result of being continually confronted with images of myself in the editing process. But more than this, reflecting upon the years since Allycia’s birth I have come to a more intimate understanding and acceptance of myself as a consequence of knowing Allycia. Whereas my experience has been a matter of will, Allycia’s contribution is in the fact that she simply is. These experiences have given me renewed hope of acceptance of people of difference - that over time we as a society may become used to seeing the different face and the different behaviours that often accompany the experience of people living with genetic difference. References Bhaskar, R. Dialectic: The Pulse of Freedom. London: Verso, 1993. Campbell, J. The Hero's Journey: Joseph Campbell on His Life and Work. California: New World Library, 2003 Caouette, J. Tarnation. Dir. J. Caouette. DVD. 2004. Chromosome 18. "Chromosome 18 Research & Registry Society." 2008. 3 March 2008 ‹http://www.chromosome18.org/›. Darke, P. "The Cinematic Construction of Physical Disability as Identified through the Application of the Social Model of Disability to Six Indicative Films Made since 1970: A Day In The Death of Joe Egg (1970), The Raging Moon (1970), The Elephant Man (1980), Whose Life Is It Anyway? (1981), Duet for One (1987) and My Left Foot (1989)." 1999. 10 Feb. 2006 ‹http://www.darke.info/›. Englandkennedy, E. “Media Representations of Attention Deficit Disorder: Portrayals of Cultural Skepticism in Popular Media.” Journal of Popular Culture 41.1 (2008): 91-118. Garland Thomson, R. “Shape Structures Story: Fresh and Feisty Stories about Disability.” Narrative 15.1 (2007): 113-123. –––. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia Univ. Press, 1997. Goggin, G. Division One: Bodies of Knowledge. 2002. 10 Feb. 2006 ‹http://adt.library.qut.edu.au/adt-qut/uploads/approved/adt-QUT20041123.160628/public/02whole.pdf›. Groening, M. The Simpsons. 20th Century Fox Television. 1989-2008. Iacone, J. The Bone Collector. Dir. P. Noyce. DVD. Columbia Pictures Corporation, 1999. Karsh, J. My Flesh and Blood. DVD. San Francisco: Chaiken Films, 2004. Kaul, K. Figuring Disability in Disability Studies: Theory, Policy and Practice. Toronto: York University, 2003. Medoff, M. Children of a Lesser God. Dir. R. Haines. Paramount Pictures, 1986. Mitchell, D. T., and S. L. Snyder. "Representation and Its Discontents: The Uneasy Home of Disability in Literature and Film." In Handbook of Disability Studies, eds. G. L. Albrecht, K. D. Seelman, and M. Bury. Thousand Oaks, CA: Sage, 2001. 195-218. –––. “The Visual Foucauldian: Institutional Coercion and Surveillance in Frederick Wiseman's Multi-Handicapped Documentary Series.” Journal of Medical Humanities 24.3 (2003): 291. Norden, M.F. The Cinema of Isolation. New Brunswick: Rutgers University Press, 1994 Oliver, M. The Politics of Disablement. The Disability Archive UK. University of Leeds, 1990. 3 April 2005 ‹http://www.leeds.ac.uk/disability-studies/archiveuk/Oliver/p%20of%20d%20oliver4.pdf›. Rubin, H. A., and D. A. Shapiro. Murderball. DVD. Paramount Pictures, 2005. Sarra, C. Chris Sarra & The Other. Unpublished manuscript, 2005. Shildrick, M. Embodying the Monster: Encounters with the Vulnerable Self. London: Sage, 2002.Wain, Veronica. 18q – A Valuable Life. Prod. V. Wain. 2008. Waters, J. Pecker. Videocassette. Polar Entertainment, 1998.

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

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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Introduction: The Creative Arts and Regional Well-BeingThe relationship between regionalism, well-being, and the creative arts has enjoined significant attention from community activists, commercial entrepreneurs, policy analysts, artists, and researchers over recent years (Australia Council for the Arts, “Living Culture”; Australia Council for the Arts, “The Arts in Regional Australia;” Drummond, Keane, and West; Elg; Warren, and West; Woodward, Bremner, and Cahalan). Underpinning most of the activity and research in this area is the understanding (occasionally bordering on an un-critical presumption) that the creative arts make a positive contribution to regional well-being. Commenting on the Live. Love. Life. creative-arts wellness festival in Daylesford, Victoria, Mary-Anne Thomas (Member of Parliament for the state seat of Macedon) stated that the festival will “reinforce Daylesford and the Macedon Ranges’ status as one of the nation’s leading wellness destinations” (Elg). For Thomas, it would appear that the linkage of the creative arts to regional well-being is never in doubt; which is to say, always already available for reinforcement. According to university-based researchers Margaret Woodward, Craig Bremner, and Anthony Cahalan, writing in a more scholarly and critical register, “there is a growing body of research which shows that thriving creative industries and cultural activities are crucial for the health and vitality of a region and its communities” (3). Qualifying this, they add that: “Achieving high levels of community well being through thriving creative activity is not however without its challenges in regional Australia” (3). Similarly, Rozaline Drummond, Jondi Keane, and Patrick West present their work as a test of the efficacy of the creative arts in aiding regional well-being: The opportunity to work collaboratively with a community like the one at Lake Bolac [Victoria] provided an occasion to gauge our discerning and initiating skills within creative-arts research and to test the argument that the combination of our different approaches adds to community and individual well-being. Our approach is informed by Gilles Deleuze’s ethical proposition that the health of a community is directly influenced by the richness of the composition of its parts. (n.p.)Deleuzean philosophy aside, quantitative data indicates that people in regional Australia are increasingly optimistic about the positive impact of the creative arts on their well-being. In 2016, 57% believed the arts impacted their sense of well-being and happiness, up from 52% in 2013 (Australia Council for the Arts, “The Arts in Regional Australia”). Given this article’s emphasis on place and well-being in relation to located creative-arts production, it is worth citing another dataset from the same Australia Council for the Arts publication, which details the “Location of Professional Artists”:There continues to be a concentration of artists in urban areas. Three quarters (74%) live in cities, compared to two thirds of the Australian population. This urban concentration […] may in part be related to concentration of cultural infrastructure in cities.1 in 6 Australian artists live in regional cities or towns (16%) and around 1 in 10 live in rural, remote or very remote areas (11%). (n.p.)Regional artists are a minority voice in the Australian creative arts. But the ways in which a minority voice is constructed, and the (potential) impact a minoritarian position has within the wider debate about regional well-being and the creative arts, requires careful unpacking. Ironically, creative artists themselves have been relatively neglected actors in this space. Working with Tony Birch’s short story, “The Red House”, as a neglected text of regionalism, this article exposes oversights in current understandings of the connection between well-being and regionalism. The Voice of the Regional Artist and “Resistant Speech” It is important to recognise that the “concentration of artists in urban areas” may sometimes lead to situations where non-regional artists, in the undoubtedly well-meaning pursuit of regional well-being, drown out the voices of regional artists in regional places (Australia Council for the Arts, “The Arts in Regional Australia”). Drummond, Keane, and West, all city-based artists, show sensitivity to this problem in their observation that: “It is not for the artists to presume that they can empower a [regional] community.” Certainly, regional artists and communities should take the lead in the development of regional well-being through the creative arts. The problem of (not) speaking for the other is, however, not so easily dealt with (Spivak). While urban artists might adopt the strategy of consciously allowing regional artists a voice, making such allowance could itself be viewed as a play of privilege and power by the city-based practitioner, resourced by their greater “concentration of cultural infrastructure” (Australia Council for the Arts, “The Arts in Regional Australia”). It is notoriously difficult to give the slip to the relatively invisible operations of entitlement. Furthermore, even if the regional artist is given a voice, there are many different ways of being heard or not heard. Gayatri Chakravorty Spivak’s distinction between “speaking” and “talking” is useful here. Discussing “Can the Subaltern Speak?” in an interview with Bulan Lahiri, Spivak notes that: “It was not about talking. It was about: when the subaltern speaks there is not enough infrastructure for people to recognise it as resistant speech. That’s what it means.” In this crucial move, Spivak refines understanding of the issues at stake around the minoritarian position of regional artists. It is not enough for regional artists merely to “talk”; rather, they must be heard with the full impact of “resistant speech” (Lahiri). Obviously, what Spivak means by the “infrastructure” of “resistant speech” differs from the meaning the word “infrastructure” has in the Australia Council for the Arts publication referred to above, which employs the term as part of a governmental and technocratic discourse (“The Arts in Regional Australia”). The distance separating these two usages of “infrastructure” indicates the difference between the quantitative and the qualitative. Working with Spivak, this article’s focus is on the gap or failing in the infrastructure of qualitative research that has led to the relative neglect of Tony Birch’s short story “The Red House” as a significant text of regionalism. The Australia Council for the Arts, with its quantitative and empirical methodology, would not count Birch as a regional writer (to the best of the author’s knowledge, Birch lives and works in Melbourne). Its definition of a regional artist undermines the possibilities of a qualitative research infrastructure. However, recognizing the powerful regional concerns within a text by a primarily city-based writer like Birch is a key move, not only in expanding the definition of who counts as a minoritarian regional writer, but in giving voice to the “resistant speech” of women and children, subalterns on Spivak’s terms, within the regional-urban flux (Lahiri). The aim of this article is to give voice to Tony Birch as a regional writer, at least insofar as he is the author of “The Red House”, while also addressing the issue of well-being (as linked to the curse of domestic violence), through attention to Birch’s artistic re-creation of regionalism. In this way, working with Spivak’s reference to “infrastructure,” the aim is to nurture the growth of a research infrastructure open to a more productive engagement with regionalism, which begins by nuancing the definition of regional. It is not that regional artists, defined either by their demography or (as with Birch) by their creative concerns, are not “talking” rather, what they are saying is not being recognised in Spivak’s strong sense of “speaking”. Indeed, the very fact that Birch is not a regional writer in an empirical sense, and that, as will be explored later in this article, “The Red House” is not even primarily set in a regional location, has at least one important consequence. Potentially, it increases the value of Birch’s short story to an engagement with regionalism, given that “The Red House” unfolds regionalism as a concept always already in productive dialogue with other frameworks of place (such as the urban and the international). To the extent that Birch is a city-based writer of regionalism, and thus on the (urban) margin of the (regional) margin, he enlivens an exquisite position of minoritarian power. Furthermore, “The Red House” contains a diversity of acute insights into the nexus of regionalism and well-being that, to date, critics have overlooked. “The Red House” and the Well-Being of Places Comparatively little scholarly attention has been paid to creative work that itself dramatises and interrogates the issue of regional well-being. Tony Birch’s short story “The Red House” (2006), from his collection of linked stories (which is sometimes referred to as a novel) Shadowboxing, is a particularly interesting candidate to fill this gap in the literature, given how delicately it ranges across, and problematises, the division between the urban and the regional.“The Red House” is the opening story of Shadowboxing. Covering a period of close to a decade, loosely overlapping with the 1960s, and set in different parts of Victoria and Melbourne, it is told in the voice of Michael, who recounts the story of a peripatetic family under stress and struggling to survive. The first sentence reads: “We moved to the red house in the winter after my younger sister, May, died of meningitis” (1). The first page also establishes the place-based coordinates of the story: “In the weeks following our move from Clunes back to Fitzroy, our new house was almost submerged by a rising flood” (1). Birch’s interrogation of regionalism will henceforth operate largely along the Clunes-Fitzroy axis. Fitzroy is an inner-city suburb of Melbourne while Clunes is a small regional town (present population: approximately 2000) about 140 kilometres north-west of Melbourne (Clunes). A flashback section of three pages or so, early on in the story, fills in the events leading up to the return to Melbourne after May’s death in Clunes. Apart from this, the story has a linear structure. The various spatial shifts of “The Red House”, both within Melbourne and between Clunes and Melbourne, are all triggered by threats against, or the pursuit of, multiple modes of well-being. The first move reflects the promise of a fresh romantic union: “It was only after he [Michael’s father] had met my mother and moved with her to my [maternal] grandmother’s house over in Carlton that he had left Fitzroy for the first time in his life” (4–5). This move from Fitzroy to Carlton is followed by a much bigger one: Carlton to Clunes. Implicated in this move are at least two modes of well-being: “The eventual move to the bush had come on the advice of a doctor at the public hospital. He said that the fresh air would help my dad recover from [his] asthma” (5); however, “My grandmother told me years later that the move did not really have all that much to do with his asthma. It was the drink” (5). The context is the husband’s assault of “his six months’ pregnant wife” with “a straight right on the end of her nose” (5). The decision to move to Clunes is made by Michael’s mother: “He fought with her so much that my mother eventually decided that she would have to move away from her mother’s house, for both their sakes. Clunes was a drastic move. But it worked, for a time […]. They appeared happy” (6). This part of “The Red House” unpacks the complexities of how well-being and (physical and mental) health are linked in a social matrix; a physical ailment (asthma) elides an addiction to alcohol, until a doctor’s discourse (validated by the authority of a medical establishment) is subverted by the subalternate voice of Michael’s grandmother. This passage also dramatises the abject scenario of a victim (Michael’s mother) attending to the well-being of her persecutor (Michael’s father) by moving to Clunes “for both their sakes” (6).Subsequently, May is born in Clunes, “a ‘special baby’. She was magical even…” (6). Indeed, “My father’s habit of explosive anger melted before May. He was truly besotted with her” (6). Just before what would have been her second birthday, May dies. “My father wanted to bring May back to Melbourne for burial, but my mother stood up to him and demanded that she be buried in the town where she was born” (6). This is the most powerful enduring connection of Michael’s family to regional Clunes. Significantly, well-being (in the sense of survival and the rebuilding of happiness after the tragic death of a daughter) is dispersed differently, through place, by mother and father, along gendered lines. While the mother wants her daughter’s birthplace and place of death to coincide, the father wants to possess his daughter, almost as if she were an object, by returning her to the city for burial. (Space restrictions preclude further exploration here of the many issues raised by May’s death, including those around the gendered nexus between well-being [happiness] and the proximity or otherwise to a child’s burial place.) After May’s death, Michael’s father’s behaviour deteriorates once more. The domestic violence continues: “It was difficult for my mother to find anything safe to say to him […]. She tried to talk about May with him several times, but he either responded with silence, or swore and yelled at her uncontrollably. He also found his way back to the pubs” (7). The decision to return to Melbourne is made by Michael’s father, against his wife’s wishes: And then one night after he had walked in from the pub he sat down at the table and just said to her, ‘Fuck all this fresh-air bullshit, we’re going back to Melbourne.’ She tried persuading him to stay, talked about his job and my school, but he would not listen. He got sick of her talking and slammed a fist into his heavy palm. ‘We’re fucken going. That’s it. We’re going.’ And that was it.She looked across the table that night and saw once again the man she had married six years earlier, the man who she had deceived herself had faded and eventually disappeared with the move away from the city. (7)In this passage, well-being (even if only imagined rather than real) is explicitly linked to place. Shortly afterwards, the family moves into the red house, where they will remain. The flashback section of the text has already sketched out the chain of events that leads to the return to the city, while also commenting on the agency Michael’s mother exercises in dealing with what, to her, is an unwelcome situation: “Mum […] had argued against coming back to the city. She sensed the looming danger in my father moving back both to his old streets and his old habits. But on realising that she had no real say in the matter, she was determined to ensure that she at least have some say in the house she was moving into” (4). Specifically, Michael’s mother turns her Fitzroy house into the regional house left behind in Clunes. Under her influence, “It wasn’t long before the inside of the house came to life and began to resemble the old place at Clunes” (11). Again: she brings a portrait of May, along with assorted baby belongings, into the Fitzroy house, keeping this secret from her husband. Thus, Michael’s mother infiltrates regional place into urban place as a strategy of (subalternate) well-being. In summary, “The Red House” unpacks well-being as an expansive category shaped by domestic violence, in a negative sense, but also more positively by the actuality or promise of happiness. It also interrogates the fine-grained links between well-being in its incarnations as medical and emotional health. At the same time, it maps the rise and fall of well-being against a human geography of regional and urban places, refusing any simplistic connection of place to well-being (more faintly, there is even the problematising presence of international place, in the character of the Italian landlord, Mr Carboni, and the reference to “the local Italian community [2]). Thus, the text’s regionalism suggests a strategic model, reliant on human intervention in the (re-)creation of place; this is most evident in Michael’s mother’s actions. “The Red House” rewards interpretation as a text of how regional place (Clunes) is re-made in urban place (Fitzroy) through the rehabilitation of a house in the interests of well-being. Well-Being and Domestic Violence across Places It is hard to imagine a greater threat to the well-being of women and children than domestic violence. This makes it all the more surprising that “The Red House” is one of relatively few texts (to the author’s knowledge) to offer a detailed outline of the territory of well-being, in its many forms stretching from the health-based to the emotional, while also including a direct and unflinching consideration of domestic violence. (One cognate text is Kathryn Heyman’s novel The Breaking, which merges medical disability and domestic violence within a broader consideration of regional well-being.) Even more unusual is the way Birch’s story of well-being and domestic violence is mapped in relation to regional and non-regional places. “The Red House” is rare and valuable for its triangulation of well-being, domestic violence, and place; above all, in its refusal to resort to any comforting notion that regional places have essential qualities that make them necessarily better for well-being than the experience of cities. This is perhaps the meaning of the colour of the red house, a colour Michael’s father hates. According to a local know-all, Emu Bailey, the red was originally a form of protest by Ettie Rogers, “‘some sort of communist’” (10). “‘Most everyone around here back then was DLP [Democratic Labour Party]. Still is, some of them. Ettie wasn’t in agreement with the others in the street, so she let them know all about it. Redone it every summer too, the same colour, red’” (10). When Michael’s mother responds to her husband’s injunction to re-paint the house “‘any colour but that fucken red’” (13) by preparing to re-paint it, subversively, “a deep red splash of colour” (19) it is not difficult to discern a silent protest, passed down from woman to woman, against the domestic violence suffered by Michael and his mother. Indeed, Birch comes very close to describing the red of the house as blood-like, labelling it “a rich congealed red” (2). “Congealed” is often used to describe blood. In this way, through a colour that evokes the body, a house becomes a visible and metaphorical protest against the bodily violence (but also emotional and mental torment) that is domestic violence. As Meg Mundell argues, “the body is integral to how literary sense of place is produced” (8). This bodily, coloured protest folds back into the special sort of place the Fitzroy home becomes. If Michael’s mother cannot keep living in Clunes, she can at least paint her city house red. Perhaps attesting to the success of this female protest, there is, towards the end of “The Red House”, a fascinating moment when, as if influenced by the domestic circumstances of transplanted place (from regional Clunes) created by Michael’s mother, domestic violence threatens, but is thwarted. Michael’s mother has just told her husband that she is going to have another baby: “He spun around and moved towards her. I thought that maybe he was going to hit her. But he didn’t. He stopped in front of her. They were toe to toe” (17). Place and (pregnant) body, in an intensified combination (or even, to riff on Spivak’s terminology, as an “infrastructure”), allow the subaltern to “speak” against her oppression. Conclusion: Re-Defining Regionalism through the Literary Creative Arts Tony Birch’s “The Red House” re-creates the regional as something other than a pre-determined place. Regionalism is “activated,” in a strategic mode, within the flux of the urban and the regional. This is particularly evident in the actions of Michael’s mother. She preserves her well-being (located in Clunes, as it were, where her daughter is buried) even after she is forced by her husband to return to Melbourne (the place she left to escape from his domestic violence). The picture of May acts as a talisman of well-being (aptly, given Clunes is described by Michael as “a town where old superstitions held sway over logic” [6]), which Michael’s mother smuggles from regional Clunes into her Melbourne house. “The Red House” is thus a vital literary rejoinder to the conceptualisation of well-being, and regional areas employed by government bodies and commercial entities, which instrumentalizes a binary opposition of the regional/non-regional. By extension, it contests the naïve linkage of regional place to well-being through a nuanced investigation into the complex links between place (regional, urban, even international) and multi-faceted well-being. Birch’s story is a valuable, fine-grained creative analysis of well-being (extending from happiness, comfort and security through to what might be called the “ill-being” of domestic violence), which is matched to an equally fine-grained engagement with multiple modalities of place. It challenges the reader to creatively re-think how regionalism and well-being might align. References Australia Council for the Arts. “Living Culture: First Nations Arts Participation and Wellbeing.” Sydney: Australia Council for the Arts, 2017. 10 Mar. 2019 <https://www.australiacouncil.gov.au/research/living-culture/>.———. “The Arts in Regional Australia: A Research Summary.” Sydney: Australia Council for the Arts, 2017. 10 Mar. 2019 <https://www.australiacouncil.gov.au/research/regional-arts-summary/>.Birch, Tony. “The Red House.” Shadowboxing. Melbourne: Scribe, 2006. 1–19. Clunes, Victoria. Wikipedia. <https://en.wikipedia.org/wiki/Clunes,_Victoria>.Drummond, Rozalind, Jondi Keane, and Patrick West. “Zones of Practice: Embodiment and Creative Arts Research.” M/C Journal 15.4 (2012). 1 Mar. 2019 <http://journal.media-culture.org.au/index.php/mcjournal/article/view/528>.Elg, Hayley. “New Wellness Festival for Daylesford.” The Advocate 22 Jan. 2018. 1 Mar. 2019 <https://www.hepburnadvocate.com.au/story/5182322/the-live-love-life-festival-is-coming-to-daylesford-this-november/>.Heyman, Kathryn. “When I First Wrote about Domestic Violence, No One Talked about It. Now the Shame has Lifted.” The Guardian. 21 May 2017. 10 Mar. 2019 <https://www.theguardian.com/books/2017/may/21/when-i-first-wrote-about-domestic-violence-no-one-talked-about-it-now-the-shame-has-lifted>.Lahiri, Bulan. “In Conversation: Speaking to Spivak.” The Hindu 5 Feb. 2011. 1 Mar. 2019 <https://www.thehindu.com/books/In-Conversation-Speaking-to-Spivak/article15130635.ece>.Mundell, Meg. “Crafting ‘Literary Sense of Place’: The Generative Work of Literary Place-Making.” JASAL: Journal of the Association for the Study of Australian Literature 18.1 (2018): 1–17. 10 Mar. 2019 <https://openjournals.library.sydney.edu.au/index.php/JASAL/article/view/12375>.Spivak, Gayatri Chakravorty. “Can the Subaltern Speak?” Colonial Discourse and Post-Colonial Theory: A Reader. New York: Harvester Wheatsheaf, 1993: 66–111. Warren, Brad, and Patrick West. “From Ecological Creativity to an Ecology of Well-Being: ‘Flows & Catchments’ as a Case Study of NVivo.” Landscapes: The Journal of the International Centre for Landscape and Language 5.2 (2013): 1–15. 1 Mar. 2019 <https://ro.ecu.edu.au/landscapes/vol5/iss2/21/>.Woodward, Margaret, Craig Bremner, and Anthony Cahalan. “Defining the Geography of Creativity in a Regional Australian University.” Proceedings of the 2012 Australian Council of University Art and Design Schools (ACUADS) Conference: Region and Isolation: The Changing Function of Art & Design Education within Diasporic Cultures and Borderless Communities. Australian Council of University Art and Design Schools (ACUADS) Conference 2012. Perth: Australian Council of University Art and Design Schools (ACUADS), 2012: 1–13. 1 Mar. 2019 <https://acuads.com.au/conference/article/defining-the-geography-of-creativity-in-a-regional-australian-university/>.

Disabled people are less satisfied with their lives compared with nondisabled people. The first chapter of this doctoral thesis aims to understand how much of this differential is explained by the actual impairments disabled people have and how much by the barriers they face to a full participation in society. Contrasting evidence on the effect of education on subjective well-being (SWB) suggests that other factors, such as aspirations or income, might mediate the relationship between satisfaction and educational attainment. As regards working status, however, the positive impact of holding a job and the negative effect of being unemployed on individual happiness remain unquestioned (Di Tella et al., 2001; Frey & Stutzer; 2000; 2010). The data is taken from the European Survey on Income and Living Conditions (EU-SILC) for year 2013. The EU-SILC is an annual survey including 32 countries, the 28 European Member States and four additional countries (Iceland, Norway, Serbia and Switzerland), which is addressed to individuals aged 16 or older living in private households. In year 2013 only, it included an ad hoc module on well-being. Results show that disabled people are significantly less likely to be working, as well as less satisfied with their lives on average. Moreover, societal participation has a positive impact on subjective well-being. The disability policies of different OECD member states have been converging since 1990, with benefits getting progressively less generous, a tightening of eligibility criteria and increased emphasis on active labour market policies. Literature on the impact of reduced benefits and activation policies on the employment of disabled people is inconclusive. However, most of it analyzes either active or passive policies. The second chapter of this thesis focuses instead on the combined effect of different policies on disabled people's labour market attachment. Google scholar was used as a search engine and snowballing allowed to find additional papers. The literature was then scanned for relevance. Northern European welfare regimes are the most effective at employing disabled individuals, with Anglo-Saxon and Eastern European regimes are at the other hand of the spectrum. The Danish model of flexicurity has a negative impact on the labour market attachment of disabled individuals, but the Dutch model does not. The employment chances of disabled people increase with national employment rates. Conclusions can be drawn about which policy mix would increase the labour market attachment of disabled people with residual work capacity. The third chapter considers both satisfaction and meaning of life (as different facets of happiness), investigating whether environmental accessibility mediates the relationship between disability and happiness. Furthermore, the effect of accessibility on the happiness of different categories of disabled is analysed. The environmental accessibility index is built using data from the 2012 Eurobameter survey on accessibility, while the rest of the variables come from the EU-SILC 2013, which includes an ad hoc module on well-being. Findings show that higher environmental accessibility narrows the happiness gap between disabled people and the rest, even after interaction terms between disability and working status are introduced. Moreover, environmental accessibility has a greater impact on the happiness of older disabled people, while the opposite is true of disabled people in the highest income quartile.