Journal articles on the topic 'Ohio Rehabilitation Services Commission'

Services to assist youth in the transition from school to work have become a priority for both rehabilitation agencies and school programs. However, a close and cooperative working relationship between agencies and schools is needed to facilitate successful transitions. This article describes an innovative course developed by the Oregon Commission for the Blind to encourage this positive working relationship between agency staff and teachers.

The Ohio Bureau of Services for the Visually Impaired office provided a paid summer work experience program for high school students in a three-county area of Southern Ohio. The program consisted of two weeks of work evaluation/adjustment and eight weeks of paid work experience in which job coaches were used. Funding was through the Job Training and Partnership Act. The mean score on a pretest of the “knowledge of the world of work,” as devised by a certified vocational evaluator, was 76 percent correct; the mean score on the posttest was 93 percent correct.

In New York State, an effective and cooperative relationship exists between the Council of Agency Administrators— comprising 17 not-for-profit agencies—and the Commission for the Blind and Visually Handicapped. This paper examines the role of each organization and hopes for future collaborative plans, including calls from the agencies for a combined state Office of Rehabilitation Services.

The Internet is a rapidly growing communication resource that is becoming mainstream in the American society. To better serve our clients, rehabilitation counselors need to understand the many aspects of the Internet and begin to explore its uses in rehabilitation counseling. The purpose of this article was to initiate a discussion regarding the impact of the Internet on rehabilitation counseling services. The current use of the Internet in counseling practices was reviewed. The relationship between the Internet usage and the empowerment of people with disabilities was explored, the roles of rehabilitation counselors in regard to the computer-mediated communication (CMC) via the Internet were outlined, and ethical and professional development-related issues concerning possible applications of CMC via the Internet for rehabilitation counseling services were discussed. CMC via the Internet may be offered as an adjunct to traditional face to face rehabilitation services. Professional organizations such as the National Rehabilitation Counseling Association (NRCA) and the Commission on Rehabilitation Counselor Certification (CRCC) should develop professional standards and ethical codes to guide such services before we fully embrace the technique.

Those who are newly blind often have difficulty in pursuing rehabilitation services, because they have not yet begun to deal constructively with the emotional issues relating to their loss of vision. For assistance here the Oregon Commission for the Blind has developed a new program, called Living With Blindness Seminars. The seminars are intensive two- or three-day sessions where clients talk about their experiences and participate in a variety of recreational and social activities.

The Visually Impaired Program, Division of Special Education of the Oakland County (Michigan) Intermediate School District, obtained Federal Act 94-142 funding in 1979. The purpose of this funding was to encourage establishment of programs that facilitated special education in the least restrictive educational environment. The Visually Impaired Program utilized these funds to establish the Educational Low Vision Aids Screening Clinic and to provide comprehensive low vision evaluations by certified low vision specialists. * This paper describes clinic rationales, procedural implementation of services from 1979 to 1982, and resultant findings. The study served as a model for the establishment of a statewide program funded in October, 1985, by the Michigan Legislature and administered by the Michigan Commission for the Blind in cooperation with the Michigan Department of Education. * A Demonstration Project funded through 94-142 federal funds, 1979-1982.

Background. With the release of the Romanow Commission report, Canadian governments are poised to consider the creation of a national home care program. If occupational and physical therapists are to have input in shaping such a program, they will need to learn from lost opportunities of the past. Purpose. This paper provides an overview of recent reforms to home care in Ontario with an emphasis on rehabilitation services. Method. Data were collected from documents and 28 key informant interviews with rehabilitation professionals. Results. Home care in Ontario has evolved in a piecemeal manner without rehabilitation professionals playing a prominent role in program design. Practice Implications. Rehabilitation services play a critical role in facilitating hospital discharges, minimizing readmissions, and improving the quality of peoples' lives. Canadians will benefit if occupational and physical therapists seize the unique opportunity before them to provide meaningful input into creating a national home care program.

As the demographic transformation of the U.S. population continues, the challenges of multicultural and diversity-based considerations remain a central focus, as does the need to incorporate cultural competencies into the practice ofrehabilitation. The Commission on Rehabilitation Counselor Certification's 2010 Code of Professional Ethicsfor Rehabilitation Counselors offers guidance for the practice of professional conduct and ethical decision making when one is working with individuals from culturally diverse groups and backgrounds. The revised code sets the expectation that the culturally competent rehabilitation counselor will develop interventions and services that are congruent with the client's values and cultural context.

Background and Objectives This mixed-method case study examined access issues related to physical therapy services among medically underserved adults within an Ohio community. Design Three community health care clinics served as the units of analysis. Methods Eleven health care providers and 110 patients participated in the study, and documents from local, state, and national resources were reviewed. Results Results revealed that structural, utilization of care, and outcome barriers existed. A lack of accessible physical therapy providers for medically underserved adults and a lack of standardized screening or assessment processes to identify physical mobility problems among people with chronic health conditions were found. Inadequate knowledge about the full scope of physical therapist practice existed, which may impede access to those individuals most in need of services. Conclusions Opportunities are present for physical therapist involvement in screening, wellness and prevention, consultation, education, and program development among medically underserved adults. However, challenges exist due to a lack of human and financial resources and the current structure of our health care system, which focuses on acute and chronic care rather than prevention.

BackgroundDirect access to physical therapist services is permitted by law in the majority of states and across all practice settings. Ohio enacted such legislation in 2004; however, it was unknown how direct access had affected actual clinical practice.ObjectivesThe purpose of this study was to describe physical therapist and physical therapist practice environment factors that affect direct access practice.DesignA 2-phase, mixed-method descriptive study was conducted.MethodsIn the first phase, focus group interviews with 32 purposively selected physical therapists were completed, which resulted in 8 themes for an electronically distributed questionnaire. In the second phase, survey questionnaires were distributed to physical therapists with an e-mail address on file with the Ohio licensing board. An adjusted return rate of 23% was achieved. Data were analyzed for descriptive statistics. A constant comparative method assessed open-ended questions for common themes and patterns.ResultsThirty-one percent of the respondents reported using direct access in physical therapist practice; however, 80% reported they would practice direct access if provided the opportunity. Physical therapists who practiced direct access were more likely to be in practice 6 years or more and hold advanced degrees beyond the entry level, were American Physical Therapy Association members, and had supportive management and organizational practice policies. The direct access physical therapist practice was generally a locally owned suburban private practice or a school-based clinic that saw approximately 6% to 10% of its patients by direct access. The majority of patients treated were adults with musculoskeletal or neuromuscular impairments.LimitationsNonresponse from e-mail may be associated with sample frame bias.ConclusionsImplementation of a direct access physical therapist practice model is evident in Ohio. Factors related to reimbursement and organizational policy appear to impede the process.

The author presents the main results of a study undertaken by the Youth Protection Commission. The study concerns 167 youths from 12 to 17 years of age, placed in a Quebec rehabilitation centre, in 1987-88 — under the Youth Protection Act — because of their “serious behaviour problems”. The study describes these problems and the social and judicial treatment provided to deal with them. It notes the beneficial effects of the boys' stay at the rehabilitation centre, a stay that is nonetheless difficult, according to the youngsters. Finally, the author tells of their ideas and questions, and with the results obtained, she puts forward some suggestions for improving the services to assist these young people.

Given the fast-paced growth of telerehabilitation, an updated integrated analysis of the ethical codes and ramifications for telerehabilitation practice is warranted. This article sensitizes rehabilitation counselors to ethical issues associated with providing telerehabilitation services and provides suggestions for safeguards and resources for addressing ethical challenges. Recent publications of the American Counseling Association (ACA, 2014), the Commission on Rehabilitation Counselor Certification (2017), and the National Board for Certified Counselors (NBCC, 2016a) highlight ethical issues such as privacy, security, informed consent, and social media guidelines. Suggestions for practitioners to address ethical challenges include acquiring compliant software, receiving training, setting clear boundaries with clients through an informed consent procedure, and using an ethical decision-making model.

SummaryGreece joined the European Community in 1981 and, three years later, the Commission of the European Communities provided financial and technical assistance under EEC Regulation 815/84 for the modernisation of the traditional psychiatric care system, with the emphasis on decentralisation of mental health services and the development of community-based services, as well as on deinstutionalization of long-stay patients and improvement of conditions in public mental hospitals. Over the last 11 years, the implementation of the EEC Reg. 815/84 programme contributed to a significant shift towards extramural care and rehabilitation. The role of the large mental hospitals has gradually been diminished and a large number of long-stay patients have been deinstitutionalised. It is commonly accepted that the EEC-funded psychiatric reform programme, despite inadequacies and constraints, had an impact on the changing mental health scene in Greece.

Based on the report of Indonesia’s National Commission of Women Rights, the data of violence against women in 2017 are distributed as 10205 cases of domestic violence (75%), 3092 cases in community level (22%), and 305 cases in nation sphere (3%). Domestic violence is the most occurred violence with 4281 cases of physical abuse (42%), followed by 3495 cases of sexual abuse (34%), 1451 cases of psychological abuse (14%), and 978 cases of economic abuse (10%). There are 3092 cases of violence in community level, where sexual abuse is placed in the first rank with 2.290 cases (74%), followed by physical abuse with 490 cases (16%), psychological abuse with 83 cases (3%), violence to migrant labor with 90 cases (3%), and trafficking with 139 cases (4%). The data in Central Java since 2014 until April 2017 noted 5881 victims of violence, consisting of 4724 female and male victims. The data showed that there are 5163 male and 425 female offenders in the violence cases.The fulfillment of the rights for women to get the protection and rehabilitation, especially to get quality, comprehensive, and continuous rehabilitation is urgently required. The regulation to protect and rehabilitate women as the victims of violence exists, although the implementation is not enough.This research used socio-legal approach; an approach overviews the legal and social aspect in observing and finding solution related to the problems in this research.Legal protection to women as the victims of violence exists in the Law and Regulation in Indonesia (Law of Domestic Violence, Law of Trafficking, Law of Victim and Witnesses Protection), while the rehabilitation to violence against women includes medical services, legal aid services, legal enforcement services, legal re-socialization, shelter service, home security services, and counselling services.

Background Homeless services expend considerable resources to provide for service users’ most basic needs, such as food and shelter, but their track record for ending homelessness is disappointing. An alternative model, Housing First, reversed the order of services so that homeless individuals are offered immediate access to independent housing, with wraparound supports but no treatment or abstinence requirements. Although the evidence base for Housing First’s effectiveness in ending homelessness is robust, less is known about its effectiveness in promoting recovery. Objective The objective of this research is to compare rehabilitation- and recovery-related outcomes of homeless services users who are engaged in either Housing First or traditional staircase services in eight European countries: France, Ireland, Italy, the Netherlands, Poland, Portugal, Spain, and Sweden. Methods A mixed methods, multi-site investigation of Housing First and traditional services will compare quantitative outcomes at two time points. Key rehabilitation outcomes include stable housing and psychiatric symptoms. Key growth outcomes include community integration and acquired capabilities. Semistructured interviews will be used to examine service users’ experiences of environmental constraints and affordances on acquired capabilities to identify features of homeless services that enhance service users’ capabilities sets. Multi-level modelling will be used to test for group differences—Housing First versus traditional services—on key outcome variables. Thematic analysis will be used to understand the ways in which service users make sense of internal and external affordances and constraints on capabilities. Results The study is registered with the European Commission (registration number: H2020-SC6-REVINEQUAL-2016/ GA726997). Two press releases, a research report to the funding body, two peer-reviewed articles, and an e-book chapter are planned for dissemination of the final results. The project was funded from September 2016 through September 2019. Expected results will be disseminated in 2019 and 2020. Conclusions We will use the findings from this research to formulate recommendations for European social policy on the configuration of homeless services and the scaling up and scaling out of Housing First programs. From our findings, we will draw conclusions about the setting features that promote individuals’ exits from homelessness, rehabilitation, and recovery. International Registered Report Identifier (IRRID) RR1-10.2196/14584

192 Background: The newest Commission on Cancer (CoC) standards focus on patient-centered care across the cancer continuum and include palliative care (PC) and psychosocial care (PS). Little is published regarding the challenges of implementing these standards in community oncology settings. To help examine the integration of PC and PS and to identify barriers and best practices, an assessment was conducted by sites selected to take part in the National Cancer Institutes’ Community Cancer Centers Project (NCCCP). Methods: The NCCCP’s goals to improve quality of care and reduce healthcare disparities included goals for expansion of PC and PS services. Volunteers formed workgroups using monthly teleconferences to share best practices and resources. A questionnaire based on the National Quality Forum (NQF) preferred practices was completed (January-April 2012) by 22 of 29 sites. Results: All respondents have inpatient PC available, 65% in the outpatient setting; 39% described PC as an integral part of their cancer program. All have designated outpatient staff providing symptom management and rehabilitation services. Nurse practitioners and physician assistants are used at 78% of the centers. Interdisciplinary staff includes pharmacists and dietitians; integrative/complementary medicine is found in 57% of the centers. All have integrated PS services: social workers are available in 91% of sites, 30% have psychiatrists, and 30% have psychologists. Most perform psychosocial screening using the NCCN Distress Management tool; 74% have standardized processes. Spiritual support is present in 70% of programs, sexual counseling services in 26%. The majority provides bereavement support. 48% have an outpatient advanced directive program. Inpatient hospice beds are available in 52% of the institutions and 22% own a hospice. Conclusions: Challenges remain with implementation of psychosocial screening and care. Programs to address sexual counseling and advanced directives are lacking. Additional efforts are needed to integrate PC services across the cancer continuum. Project funded with federal funds from the NCI, Contract No. HHSN261200800001E.

Background The physical therapy profession has called for the provision of pro bono services. Little is known about the impact on students involved in sustainable pro bono leadership. One physical therapy program established a pro bono physical therapy clinic under the direct leadership of a board of students. Objective The purpose of this study was to describe the experiences of the inaugural members of the Chester Community Physical Therapy Clinic Student Board in creating and launching the student-led pro bono physical therapy clinic. Methods A purposive sample of the 18 members participated in semistructured interviews. Content analysis was conducted using a commercially available software program. Trustworthiness was enhanced with credibility, transferability, and confirmability. Results The emergent categories were: (1) leadership skill development, (2) competency in hands-on clinical and administrative skills, and (3) commitment to both the community and the clinic. Pride emerged as a strong and overarching theme throughout the experience. Conclusions The student-led pro bono clinic meets several Commission on Accreditation in Physical Therapy Education criteria in a sustainable manner and serves as a means for measuring and meeting program mission and goals. Participation in the program was a meaningful experience and developed ownership, leadership skills, and pride among the students. There are also possibilities for expanding aspects of the program so that all physical therapist students can benefit from pro bono service opportunities.

Flood is a disaster that has the biggest threat, in terms of the number of victims or losses. Semarang City is a city that is classified as a flood prone area, this is due to the geographical location in the lowlands and highlands. The impact of the flood disaster caused damage and losses from various sectors of public infrastructure including the education service sector and health services. Damage and loss of public infrastructure will burden the government in the post-flood recovery phase. An assessment of infrastructure damage and losses from flooding is needed in order to help the Semarang City Government prepare a budget plan and manage rehabilitation and reconstruction. The purpose of this research is to explore the loss of public infrastructure due to the impact of the flood disaster, so that it can accelerate the post-disaster recovery process and management strategies for the risk of further flood disasters. The valuation method used is ECLAC (Economic Commission for Latin American and the Caribbean) Method. This method can identify damage and estimate the losses caused by floods. The results of this study are that each public infrastructure building has a different level of damage and loss and the budget allocation for disaster management each year is still inadequate. A risk transfer strategy is needed with an insurance financing scheme based on the level of risk in each infrastructure building.

Although the clinical and electrical diagnoses and treatments of peripheral nerve injuries (PNIs) had been described prior to World War I, many reports were fragmented and incomplete. Individual physicians' experiences were not extensive, and in 1914 the patient with a PNI remained a subject of medical curiosity, and was hardly a focus of comprehensive care. World War I altered these conditions; casualties with septic wounds and PNIs swamped the general hospitals. By 1915, specialized hospitals or wards were developed to care for neurological injuries. In the United Kingdom, Sir Robert Jones developed the concept of Military Orthopedic Centres, with coordinated specialized care and rehabilitation. Military appointments of neurologists and electrotherapists sharpened clinical diagnoses and examinations. Surgical techniques were introduced, then discarded or accepted as surgeons developed skills to meet the new conditions. The US Surgeon General, William Gorgas, and his consultant in neurosurgery, Charles Frazier, went a step further, with the organization of a research laboratory as well as the establishment of a Peripheral Nerve Commission and Registry. Despite these developments and good intentions, postwar follow-up for PNIs remained incomplete at best. Records were lost, personnel transferred, and patients discharged from the system. The lack of a standardized grading system seriously impaired the ability to record clinical changes and compare outcomes. Nevertheless, specialized treatment of a large number of PNIs during World War I established a foundation for comprehensive care that influenced military medical services in the next world war.

Acute physicians are confronted daily by the relentless increase in clinical demand, inadequate continuity of care, breakdown in out of hours care and a looming crisis in the medical workforce. The scale and gravity of these factors, together with changes to patient’s needs relating to the ageing demography, were detailed in the RCP report published in September 2012 ‘Hospitals on the edge’. The top concern of RCP members and fellows was the lack of continuity of care, ahead of financial pressures and clinical staff shortages. Worryingly one in ten physicians stated they would not recommend their hospital to a family member, and a further 25% were ambivalent on this question. Concern about the provision of acute medical care is not confined to consultants and specialist registrars. Another RCP report, ‘Hospital workforce, fit for the future?’ (2013) highlighted that 37% of FT2s and CMTs considered the workload of the medical registrar on call ‘unmanageable’. The outcome of the Mid Staffs independent inquiry in February 2013 provided critical context for the launch of the Future Hospital Commission (FHC) report, which was launched seven months later in September. The report was met with an extremely positive response from patients, carers, NHS staff, healthcare leaders and politicians. Lancet Editor Richard Horton said that the Commission had ‘produced the most important statement about the future of British medicine for a generation.’ Secretary of State for Health Jeremy Hunt praised the report and its ‘buck stops here’ approach. The Daily Mirror even noted that the report was one of the few areas on which the government and the opposition could agree! ‘Future Hospital: caring for medical patients’ places the patient at the centre of healthcare. Organising healthcare delivery around the needs of the patient is at its heart and features extensively in the core principles and 50 recommendations. A series of unequivocal commitments were made to patients, on issues generating considerable patient concern: moving beds in hospital, quality of communication and arrangements to leave hospital. Patients and carers were represented in each of the Commission’s five work streams, led on the recommendations relating to building a culture of compassion and respect, and participated in launch of the report to the media. The primary focus of the FHC report is on the acute care of medical patients and the views of acute physicians were key to articulating these recommendations. However the report is clear that the solution to current acute pressures on hospitals and specifically in-patient pathways, lie across the whole health and social care system. Care must be delivered in the setting in which the patient’s clinical, care and support needs can best be met and not merely delegated to the acute hospital site. This inevitably means 7 day services in the community as well as in hospital and a consistent new level of “joined up care” with integration, collaboration and information sharing across hospital and all healthcare settings. In keeping with this the report highlights the urgent need to establish alternatives to hospital admission including the extensive use of ambulatory emergency care (AEC), the provision of secondary care services in the community and an expansion of intermediate care rehabilitation services. Many of the report’s recommendations arose from clinical staff devising innovative solutions to improve the quality of care and ameliorate clinical demand. The report showcased a range of case studies describing service developments and new patterns of care, innovations that would not have been possible without the leadership and sheer determination of physicians and their teams. Dr Jack Hawkins, Acute Physician in Nottingham Queen’s Medical Centre, described how analysis of performance data showing that 50% of acute medical patients were discharged within 15 hours, led to the starting vision for their new AEC service as “everyone is ambulatory until proven otherwise”. The case studies highlight the resources needed to implement service change and the supportive staff relationships and changes to working practices that underpin their success. The report describes the “acute care hub” as the focus of acute medical services, comprising colocation of the AMU, short stay wards, enhanced care beds and the AEC. Much of this echoes the front door configuration described by the acute medicine task force report in 2007 ‘Acute medical care: The right person, in the right setting, first time’. What the FHC adds are recommendations to co-locate AEC and a clinical co-ordination centre to provide clinicians with real time data on capacity in community-based services (rehabilitation and social services), and link to rapid access specialist clinics or community services to support pathways out of AEC and AMU. Recommendations to structure acute services to maximise continuity of care is a major theme. There should be sufficient capacity in the acute care hub to accommodate admitted patients who do not require a specialist care pathway and are likely to be discharged within 48 hours. This is supported by recommended changes to working practices of consultant led teams where they commit to two or more successive days working in the hub. This allows the consultant led team who first assess the patient in AMU to continue to manage them on the short stay ward through to their discharge – an approach familiar to acute physicians but which may be novel to GIM physicians assigned a single on call day. Striving to deliver continuity by a stable clinical team should also simplify handover, improve training, feedback and the quality and safety of the care delivered. The commission recommends designating enhanced care (level 1) and high dependency (level 2) beds in the acute care hub to improve the care of acutely ill patients requiring an increased intensity of monitoring and treatment. The RCP acute medicine taskforce made the same recommendation in 2007 but acute trusts have been slow to embed level 2 beds in particular, on AMUs. In the future hospital every effort should be made to enhance rapid access to specialist pathways that benefit patients, including entry to pathways for acute coronary disease or stroke or the frail elderly direct from the community or emergency department. Here the report is clear that the responsibility for continuity of care rests with the specialty consultant, who should review the patient on the day of admission. Patient experience should be valued as much as clinical effectiveness. Patients want “joined up care” that is tailored to their acute illness, comorbidities and requirements for social support. From a patient’s perspective, failures of information sharing between primary and secondary care, or specialist services within the same or neighbouring Trusts, are incomprehensible. The report highlights that this informatics disconnect undermines accurate clinical assessment at the time of presentation with an acute illness, when patients are most vulnerable, and this deficit will impact on patient experience, timely access to specialist staff, patient outcome and resource use. Robert Francis, in commenting on the report of the Mid Staffordshire public enquiry highlighted that the subject was ‘too important to suffer the same fate as other previous enquiries .. where after initial courtesy of welcome, implementation was slow or non existent’. The RCP shares this urgency and having accepted the recommendations of the FHC as a comprehensive ‘treatment’ for the care of patients in the future hospital, is determined that the FHC report itself will not sit on a shelf, gathering dust. The RCP is now embarking on a future hospital implementation programme. This programme gathers momentum this month with the appointment of future hospital officers and staff and the immediate priority is to identify partners to set up national development sites. The RCP is seeking enthusiastic clinical teams to investigate changes to a range of hospital and community based medical services in line with the FHC principles and to evaluate the impact on patient care. Over the next 3 years it is envisaged that the programme will also include research and new approaches to commissioning, workforce deployment, healthcare facility design and integrated working across the health economy. The evaluation of these projects, in relation to the quality and safety of patient care and patient experience, will be crucial and will be shared through the RCP and its partners. In addition, from April the RCP will publish a Future Hospital journal to help share the learning from the implementation programme and welcomes submissions of innovative best practice in acute care. The challenge now is to convert the goodwill generated by publication of the FHC principles, into an implementation programme nationally, that helps build an effective evidence base to support new ways of providing high quality, safe, patient care. Acute physicians are crucial partners in meeting this challenge.

Background:Ehlers-Danlos Syndromes are heritable connective tissue disorders.They are multisystemic and patients can present with several symptoms such as joint pain and instability, visceral and autonomic dysfunction, as well as significant psychosocial sequela. Managing this cohort of young patients is usually challenging as many patients present late due to delayed diagnosis, often with several complications, problems with mobility and opioid use. Furthermore, there is often a prolonged lack of coordinated healthcare and access to social care services. A recent parliamentary debate in the U.K. highlighted that hEDS services are excluded from specialist Rheumatology commissioning services. In order to ascertain the relevance and utility of specialist services in this population, we conducted this study.Objectives:The objective of this study was to map the patient experience following a referral to the specialist clinic in order to assess the need for an integrated, multidisciplinary approach to treating patients with hypermobility EDS.Methods:We retrospectively reviewed the records of 50 patients with the diagnosis of hypermobility EDS who were seen in a specialist hypermobility clinic at University College Hospital UCLH between January 2016 and March 2016. Relevant data was collected regarding their medical care in our hospital up to October 2019.Results:The median age was 37 (range 21-59). We had 10 males and 40 females. The diagnosis of hypermobility EDS was based on the 1997 criteria as these patients were seen prior to the 2017 classification. Overall, the study yielded 6 key themes: 1. All patients experienced chronic pain, with 36% reporting use of opioids for pain management. 2. Patients were referred to multiple medical specialities within the same hospital trust, (22% patients were referred to ≥5 specialities). 3. Patients required a high number of follow up appointments (28% of patients required ≥20 follow-up visits). 4. Failed discharges were common; patients were often referred back to the Rheumatology Clinic despite being discharged to primary care. 5. Patients had a significant number of comorbidities, reflected by polypharmacy. (36% of patients were prescribed ≥5 medications). 6. Disability was high (20% of patients reported severe mobility problems).Conclusion:This study shows that patients with hEDS referred to UCLH have significant levels of disability, opioids use and polypharmacy especially for a relatively young population of patients. They need a complex interdisciplinary approach in a timely manner. In order to minimise delays and allow earlier diagnosis and intervention, we have recently adopted a multidisciplinary team approach, including pain specialists, rheumatologists, psychologists, physiotherapists, nurse specialists, urogynaecologists and neurogastroenterologists. This allows more coordinated and efficient care and incorporates an EDS-specific pain management programme. Specialised services for complex hEDS cases should be established and adequately resourced. Moreover, it would be cost effective to commission a patient-centred “one-stop-shop” service, where patients, who often travel from long distances with severe disabilities, can be seen by multiple specialities in a single visit.References:[1]Bennett, S., Walsh, N., Moss, T. and Palmer, S. (2019). Understanding the psychosocial impact of joint hypermobility syndrome and Ehlers–Danlos syndrome hypermobility type: a qualitative interview study. Disability and Rehabilitation, pp.1-10. Healthwatch Calderdale. (2019). Hypermobility Syndromes Project - Healthwatch Calderdale.[2]Tinkle, B., Castori, M., Berglund, B., Cohen, H., Grahame, R., Kazkaz, H. and Levy, H. (2017). Hypermobile Ehlers-Danlos syndrome (a.k.a. Ehlers-Danlos syndrome Type III and Ehlers-Danlos syndrome hypermobility type): Clinical description and natural history. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), pp.48-69.Disclosure of Interests:None declared

Abstract STUDY QUESTION What is the current status of assisted reproductive technology (ART) service availability, efficacy and safety in mainland China? SUMMARY ANSWER In this first national report on ART status in mainland China, data on treatment numbers, outcomes and complications in 2016 are provided and analyzed, respectively. WHAT IS KNOWN ALREADY National ART Service Provision Surveys are conducted in mainland China regularly. Data were analyzed, and this manuscript was written by team members from the National Center for Women and Children’s Health, China CDC and the Department of Women and Children Health, National Health Commission of the People’s Republic of China. STUDY DESIGN, SIZE AND DURATION A cross-sectional nationwide survey was completed in 2018, in which data regarding ART treatments, performed from 1st January to 31st December2016 in 445 ART clinics located in 31 provinces of mainland China, were collected. PARTICIPANTS/MATERIALS, SETTING AND METHODS There were in total 451 licensed ART clinics (including artificial insemination clinics) in mainland China in 2016, of which 445 submitted service data. A total of 906 840 cycles were provided by 323 in vitro fertilization (IVF) clinics, involving 375 770 conventional IVF cycles, 154 948 intracytoplasmic sperm injection (ICSI) cycles, 367 146 frozen embryo transfer (FET) thawing cycles and 8976 preimplantation genetic diagnosis (PGD) treatment cycles. A total of 161 376 artificial (i.e. intrauterine) insemination (AI) cycles were reported by 443 clinics, with 126 872 cycles using the husband’s semen (AIH) and 34 504 using donor semen (AID). MAIN RESULTS AND THE ROLE OF CHANCE In total, 98.7% of the licensed clinics, contributing to 100% of the ART services (including AID and AIH cycles), were included in this report. (Six clinics provided institutional information only and were excluded.) There were 906 840 in vitro fertilization cycles performed in mainland China with a population of over 1.3 billion inhabitants, with cycles per million inhabitants (C/M) increasing from 360 in 2013 to 657 in 2016, nationwide (range among provinces: 45–3676). After treatment with conventional IVF, the clinical pregnancy rate (PR) per oocyte retrieval cycle was 23.2%, the delivery rate (DR) per oocyte retrieval cycle was 18.7% and the proportion of twin delivery among the total deliveries was 27.9%. For ICSI cycles, the PR, DR and TDR were 20.5%, 16.7% and 27.2%, respectively. For FET per thawing cycles, the PR, DR and TDR were 48.2%, 37.6% and 24.2%. For PGD per diagnosis cycles, the PR, DR and TDR were 38.1%, 29.7% and 4.2%. For AIH cycles, the PR and DR were 13.3% and 10.5%; for AID cycles, the PR and DR were 24.3% and 21.1%, respectively. The total number of live infants born in mainland China in 2016, was 18.46 million, and the number of infants born through ART conducted in 2016 was 311 309, which accounted for 1.69% of the total. The reported rate of birth defects was about 87/10 000. The incidence of moderate to severe ovarian hyper-stimulation syndrome (OHSS) was 11.5 per 1000 oocyte retrieval cycles, and other complications were much more rare. LIMITATIONS AND REASONS FOR CAUTION This report is based on the summary data of ART services provided. The success rates were not calculated by age stratification. A low rate of birth defects was reported, which might be confounded by variations in birth follow-up methods, statistical timing and record taking. WIDER IMPLICATIONS OF THE FINDINGS ART service availability has improved significantly in recent years in mainland China. Because China is a vast country, significant imbalances in ART service provision do exist; however, the main efficacy and safety indicators were close to those of western countries. TRIAL REGISTRATION NUMBER N/A STUDY FUNDING/COMPETING INTEREST(S) The study was funded by the National Key R&D Program of China (2016YFC1000307–2). There are no competing interests.

Purpose – The purpose of this paper is to present the perspectives of English adult social care sector partners on the qualifications and standards required for leaders as they prepare to meet the demands of commissioning personalised care. Continuing an action research cycle guided by Coghlan and Brannicks (2010, p. 4) organisational centred model (McCray and Palmer, 2009) it benefits from the previous experience and reflection in action of the partners and researchers. Set in a general social care context, lessons learned from the study outcomes will be of interest to both commissioners of services and service users with acquired brain injury. Design/methodology/approach – A model of action research informed by Coghlan and Brannicks’ (2010, p. 4) organisational centred model focused on context, quality of relationships, quality of the research process and its’ outcomes was used. The role of the authors was to facilitate diagnosis of the leadership issues arising from the implementation of personalised care in the English adult social care sector and in collaboration with sector partners seek resolutions. Six focus groups comprising two commissioners, service providers, user group and care manager/social work leads were facilitated at two separate events in the south of England. Findings – Findings presented are derived from focus group discussions with strategic and organisational leaders and service user partners from the English adult social care sectors. Analysis of focus group data identified a number of themes. The overarching themes of human resource management, gaps in industry standards and leadership are discussed here. Whilst industry sector standard qualifications and frameworks may be at the centre of strategic planning for transformation, findings here have identified that additional support will be required to create leaders who can commission successfully to create cultural change. New approaches to leadership development may be needed to facilitate this process. Research limitations/implications – The study offers a single method qualitative research approach based on two local authorities in the south of England. It presents a localised and particular view of leadership development needs. Practical implications – The paper shows how action research can make a contribution to knowledge and practice. Originality/value – The paper provides interesting new insights into the skills for commissioning in a changing public and third sector environment with reference to commissioning personalised support for people with brain injury.

212 Background: The 2006 ASCO and the ESMO consensus statement on quality cancer care defined the delivery of multimodality treatment by a multidisciplinary team of appropriately skilled health professionals as an essential component of quality cancer care. Furthermore, MDCs have demonstrated improved survival in breast, head and neck, ovarian and colorectal cancers. Despite these advantages, health care systems struggle to implement and sustain MDCs due to the heavy burden imposed by the required work processes. We report on the large-scale utilization of a propriety quality measurement platform OncoLens to run MDCs across the country. Methods: Technology quality metrics were collected from the ongoing daily usage of the platform including cancer characteristics, care team utilization metrics, average attendance, quality metrics collected for accreditation and clinical trials matching on the OncoLens platform. Results: The virtual platform was accessible to around 8000 providers across the United States. In 2020, 13771 cases were discussed. Attendance of the required specialties for high quality care of Medical Oncology, Radiation Oncology, Surgery, Pathology and Radiology was attained, with the average conference attendance being 14. Race/ethnicity data on the cases revealed White (9197, 67%), Black (1817,13%), Hispanic (363,3%) and Other (2356,17%). Optional quality metrics were collected during discussions for CoC, NAPBC and NAPRC accreditation. These included NCCN guidelines discussed, Staging discussed, clinical trials discussed, Genetics discussion, palliative care discussion, rehabilitation services, reproductive counselling discussed, psychosocial counselling discussed, nutritional counselling discussed, reconstructive surgery discussion, tobacco cessation discussion across General and Site-specific conferences. Most of the case presentations were prospective. This format does enable cancer programs to collect quality metrics around Cancer program accreditation by the American College of Surgeons. 66% of patients discussed potentially matched to clinical trials during the discussion. Conclusions: A technology platform can assist cancer programs to collect quality metrics around cancer care. This gives them the ability to run data driven quality programs targeting specific quality metrics. Hispanics have a lower percentage of cases presented at MDC compared to other race/ethnicities. It is possible to have high quality discussions and attain metrics for Commission on Cancer accreditation utilizing a virtual platform.

As the hospitality industry globally suffers persistent skills shortages, organisations are increasingly looking to non-traditional labour markets to fill vacancies. Indeed, hospitality has a long tradition of employing from society’s margins [1]. Research has shown hospitality firms are more likely than other industries to hire people experiencing disability [2]. Therefore, hospitality has the need, the tradition and the capacity to implement and support lasting change in the employment of disability youth. The Australian National Disability Insurance Scheme (NDIS), which is overhauling the sector and transforming the way persons experiencing disability access services, is modelled on research demonstrating the broader economic benefits of greater inclusive workforce participation [3]. The scheme is also consistent with the fact that employment is the key to exits from disadvantage for most people of working age [4]. Yet Australia ranks 21st out of 29 OECD nations in disability employment rates [5]. These poor rates of providing inclusive employment are often levelled at firms’ unwillingness to hire applicants with a disability [6]. In late 2016, a disability services provider (DSP) and a registered charity partnered in a mobile coffee cart social enterprise to create open employment pathways for a group of disability youth previously employed in the ‘sheltered workshop’ model. A 360-degree ethnography combining interview and observational methods [7] was designed to investigate the holistic experiences of the youth and to gain insights into the levers and barriers regarding open employment. The agency/structure dualism framed the study, as it is recognised that agency is in itself not sufficient when its expression is constrained by an individual’s social deficits and the legacies of their entrenched disadvantage [8]. In all, five ‘baristas’ experiencing disability (across 10 interviews), 11 co-workers/managers from the DSP and the charity, and 21 customers comprised the sample. Previous research has identified industry’s reticence to employ people with disability as a key barrier, despite ability and willingness to work [5]. This study, however, identified a complex range of structural factors inhibiting the agency of disability youth to self-determine towards open employment. These included a history of poor experiences in institutional settings (e.g. schooling and sporting), the safety and security of sheltered workshops, parental oversight and the staffing requirements of DSP social enterprises. Surprising individual-level factors were also manifest, including the inability to responsibly manage new- found workplace independence and an absence of extrinsic motivators to work – given that the disability youth enjoyed financial security regardless of earnings. This research challenges the conventional wisdom that organisations alone need to revisit their willingness, capacity and preparedness for providing accessible employment, and rather suggests that deep-seated structural factors, and their impacts on youth, require concomitant attention. Corresponding author Richard Robinson can be contacted at: richard.robinson@uq.edu.au References (1) Baum, T. Human Resources in Tourism: Still Waiting for Change? A 2015 Reprise. Tourism Management 2015, 50, 204–212. (2) Houtenville, A.; Kalargyrou, V. Employers’ Perspectives about Employing People with Disabilities. Cornell Hospitality Quarterly 2014, 56(2), 168–179. (3) Deloitte Access Economics. The Economic Benefits of Increasing Employment for People with Disability; Australian Network on Disability: Sydney, Australia, 2011. (4) McLachlan, R.; Gilfillan, G.; Gordon, J. Deep and Persistent Disadvantage in Australia; Productivity Commission Staff Working Paper: Canberra, Australia, 2013. (5) Darcy, S.A.; Taylor, T.; Green, J. 'But I Can Do the Job': Examining Disability Employment Practice through Human Rights Complaint Cases. Disability and Society 2016, 31(9), 1242–1274. (6) Lysaght, R.; Cobigo, V.; Hamilton, K. Inclusion as a Focus of Employment-Related Research in Intellectual Disability from 2000 to 2010: A Scoping Review. Disability and Rehabilitation 2012, 34(16), 1339–1350. (7) Sandiford, P. Participant Observation as Ethnography or Ethnography as Participant Observation in Organizational Research. In The Palgrave Handbook of Research Design in Business and Management; Strand K. (Ed.); Palgrave Macmillan: London, 2015; pp 411–446. (8) Graham, J.; Shier, M.; Eisenstat, M. Young Adult Social Networks and Labour Market Attachment. Journal of Social Policy 2015, 44(4), 769–786.

Social Media is the new avenue for creating connections and sharing of information. Through social media, one can reach a global community. In recent years, we have seen how social media has changed the way we do things. Social Media has been extensively utilized for health education and promotion, proving itself to be an invaluable tool for public health, professional networking and patient care benefit. The challenge has been to use the power afforded by social media responsibly, and to define the line between use and abuse. While there may be laws, implementation proves to be a challenge in the digital age. Therefore, self-regulation and institutional policy remain a critical part. It is therefore urged that hospitals and health care facilities adopt their own social media use policy appropriate for the institution. Below are proposed rules that could guide institutions in developing their own policy for social media use: Sec. 1. Declaration of Policy. The health facility recognizes that the exercise of the freedom of expression comes with a responsibility and a duty to respect the rights of others. The health facility likewise acknowledges the fundamental right to privacy of every individual. This policy shall provide rules for responsible social media use. Sec. 2. Definition. For purposes of this policy, the following definitions shall be used: Social Media refers to electronic communication, websites or applications through which users connect, interact or share information or other content with other individuals, collectively part of an online community. This includes Facebook, Twitter, Google+, Instagram, LinkedIn, Pinterest, Blogs, Social Networking sites. Health facility shall refer to the hospital or other health care facilities, including training and educational institutions. Individual shall refer to physicians, employees, other health facility staff, residents, or students to which this policy would apply Sec. 3. Applicability. This policy shall apply to all physicians, health professionals, employees and other health facility staff, including students or residents in training, practicing their profession, working, or fulfilling academic and clinical requirements within the health facility, whether temporary or permanent. Sec. 4. General Principles. Social media use shall be guided by the following principles: In using social media, an individual should always be mindful of his or her duties to the patient and community, his profession and his colleagues. The individual should always be conscious of his or her online image and how it impacts his or her profession, or the institution where he or she is professionally employed, affiliated or otherwise connected. Responsible social media use also requires the individual to ensure that in his or her social media activity, there is no law violated, including copyright, libel and cybercrime laws. At all times, the individual shall respect the right of privacy of others. Use of social media requires a personal commitment to uphold the ethical standards required of those providing health services, upon which patient trust is built. Sec. 5. Social Media for Health Education or Promotion a.The individual using social media for health education or promotion must be well-informed of the matter subject of the social media post, comment or other activity. The individual shall refrain from any activity which spreads or tends to spread misinformation. An article written by an individual and posted in social media must be evidence-based and disclose connections with pharmaceutical or health product companies or other sources of possible conflict of interest. c.Social media shall not be used to dispense specific medical diagnosis, advice, treatment or projection but shall consist of general opinions only. Use of social media should include statements that a person should not rely on the advice given online, and that medical concerns are best addressed in the appropriate setting. The individual shall be careful in posting or publishing his or her opinion and shall ensure that such opinion will not propagate misinformation or constitute a misrepresentation. The individual shall not make any misrepresentations in his or her social media activity relating to content, his or her employment or credentials, and any other information that may be misconstrued or taken out of context. Sec. 6. Professionalism in Social Media Use Individuals are discouraged from using a single account for both professional and private use. Be mindful that an electronic mail address used professionally may readily be linked to a social media site used privately. The individual shall conduct himself or herself in social media or online the same way that he would in the public, mindful of acting in a manner befitting his profession, or that would inspire trust in the service he or she provides, especially if the individual has not separated his or her professional and personal accounts in social media. The individual shall likewise refrain from using the name, logo or other symbol of an institution without prior authority in his or her social media activity. An individual shall not identify himself or herself as a representative of an institution in social media without being authorized to do so. Individuals shall not accept former or current patients as friends or contacts in their personal accounts, unless there is justification to do so, such as a pre-existing relationship or when unavoidable for patient care. In case of online interaction with patients, this should be limited to matters related to the patient’s treatment and management, and which could be properly disclosed. Informal and personal information concerning a patient, colleague or the health facility shall not be posted, shared or otherwise used in social media. Social media shall not be used to establish inappropriate relationships with patients or colleagues, and shall not be used to obtain information that would negatively impact on the provision of services and professional management of the patient. An individual shall refrain from posting, sharing or otherwise using photos or videos taken within the health facility, which would give the impression of unprofessionalism, show parts of the health facility where there is an expectation of privacy, or those which includes colleagues, employees, other health facility staff, or patients without their express consent. The consent requirement shall apply even if the other individuals included are not readily identifiable. Sec. 7. Responsible Social Media Activity In using social media, the individual shall respect the dignity, personality, privacy and peace of mind of another. The individual shall not post, share or otherwise use social media with the intent of damaging the reputation of any other individual or institution, especially if the subject is identified or identifiable. c.Derogatory comments about patients, colleagues, employers and institutions or companies should be avoided. An individual may “like” a defamatory post but he or she must use caution when sharing, retweeting or contributing anything that might be construed as a new defamatory statement. A post, comment or other social media activity is considered defamatory if: 1) The activity imputes a discreditable act or condition to another; 2) The activity is viewed or seen by any other person; 3) The person or institution defamed is identified or readily identifiable; 4) There is malice or intent to damage the reputation of another. He or she shall be careful of sharing posts or other contents that are unverified, particularly if it discredits another person or institution, or imputes the commission of a crime or violation of law even before trial and judgment, and violates the privacy of another. Fair and true reporting on matters of public concern shall be allowed provided that the content was obtained lawfully and with due respect for the right of privacy. An individual shall not use copyrighted materials other than for fair use where there is proper citation of source and author. Use of copyrighted material for purpose of criticism, comment, news, reporting, teaching, scholarship, research, and similar purposes is compatible with fair use. An individual is prohibited from: 1) Social media activities that defame, harass, stalk, or bully another person or institution. 2) The use or access of personal social media accounts of others without authority. 3) Posting, sharing or otherwise using any information intended to be private or obtained through access to electronic data messages or documents. 4) Posting, sharing or otherwise using recorded conversations between doctors, individuals or patients, when such recording, whether audio or video, was obtained without consent of all the parties to the conversation Individuals should use conservative privacy settings in their social media account used professionally. The individual should also practice due diligence in keeping their social media accounts safe such as through regular password change and logging out after social media use. Sec. 8. Health Information Privacy The individual shall respect the right to privacy of others and shall not collect, use, access or disclose information, pictures and other personal or sensitive information without obtaining consent from the individual concerned. Physicians, health facility employees and other health staff shall have the duty of protecting patient confidentiality in their social media activity. Personal health information, including photos or videos of patients, shall not be posted, shared or otherwise used in social media without consent of patient. Consent shall be obtained after explaining to the patient the purpose of the intended collection, use, access and disclosure. Consent for use of personal health information shall be written or evidenced by electronic means. An individual shall not post, share or otherwise use any information which could be used to identify patients without their consent, including patient’s location, room numbers, and photographs or videos of patients or their body parts, including code names referring to patients. The individual shall not post, share or otherwise use any other information acquired in attending to a patient in a professional capacity, and which would blacken the reputation of the patient. The duty of maintaining patient confidentiality remains even after patient’s death. An individual shall not post, share or otherwise use any information relating to the identity, status and personal details of persons with HIV, those who have undergone drug rehabilitation, and victims of domestic violence, rape and child abuse. Sec. 9. Compliance and Reporting. An individual shall strive to develop, support and maintain a privacy culture in the health facility. He or she shall abide by the social media use policy of the institution. An individual who becomes aware of unprofessional behavior, misinformation or privacy violations in social media shall report the matter to the hospital’s privacy officer or the proper office or authority within the facility. Health facilities shall in so far as practicable monitor the social media activity of all physicians, employees and other health facility staff, including students or residents in training, practicing their profession, working, or fulfilling academic and clinical requirements within the health facility, whether temporary or permanent. Sec. 10. Penalty. A violation of this policy may constitute a violation of the code of ethics of physicians and other professions, and other applicable laws. Health Professionals, employees and other Health Facility Staff. Any person found violating this policy will be considered in violation of health facility rules and regulations, and shall be subjected to health facility administrative proceedings, which after notice and hearing, and depending on the severity of the violation, could result to termination of service or withdrawal of privileges. A lighter penalty may likewise be imposed. In determining the severity of the violation, the following factors may be considered: previous violation, if any, the nature of the violation, and the extent of injury or damage. The penalty imposed by the health facility shall be without prejudice to the filing of a complaint before the Civil Service Commission, the Professional Regulations Commission, the Office of the Prosecutor or Ombudsman, or proper courts. Students. In case of students, they shall be reported to the college wherein they are enrolled and shall be subjected to disciplinary proceedings, which could result to expulsion, depending on the severity of the violation, and in accordance with the applicable University and respective College rules. A lighter penalty may likewise be imposed. The disciplinary proceedings shall be without prejudice to other applicable legal remedies.

Background Improving stroke services is critical for reducing the global stroke burden. The World Stroke Organization–World Health Organization– Lancet Neurology Commission on Stroke conducted a survey of the status of stroke services in low and middle-income countries (LMICs) compared to high-income countries. Methods Using a validated World Stroke Organization comprehensive questionnaire, we collected and compared data on stroke services along four pillars of the stroke quadrangle (surveillance, prevention, acute stroke, and rehabilitation) in 84 countries across World Health Organization regions and economic strata. The World Health Organization also conducted a survey of non-communicable diseases in 194 countries in 2019. Results Fewer surveillance activities (including presence of registries, presence of recent risk factors surveys, and participation in research) were reported in low-income countries than high-income countries. The overall global score for prevention was 40.2%. Stroke units were present in 91% of high-income countries in contrast to 18% of low-income countries (p < 0.001). Acute stroke treatments were offered in ∼ 60% of high-income countries compared to 26% of low-income countries (p = 0.009). Compared to high-income countries, LMICs provided less rehabilitation services including in-patient rehabilitation, home assessment, community rehabilitation, education, early hospital discharge program, and presence of rehabilitation protocol. Conclusions There is an urgent need to improve access to stroke units and services globally especially in LMICs. Countries with less stroke services can adapt strategies from those with better services. This could include establishment of a framework for regular monitoring of stroke burden and services, implementation of integrated prevention activities and essential acute stroke care services, and provision of interdisciplinary care for stroke rehabilitation.

Preface All health care professions are accountable to the various publics that they serve. The American Physical Therapy Association (APTA) has developed Guide to Physical Therapist Practice (“the Guide”) to help physical therapists analyze their patient/client management and describe the scope of their practice. The Guide is necessary not only to daily practice but to preparation of students. It was used as a primary resource by the Commission on Accreditation in Physical Therapy Education (CAPTE) during its revision of evaluative criteria for physical therapist professional education programs and is an essential companion document to The Normative Model of Physical Therapist Professional Education, Version 97. Specifically, the Guide is designed to help physical therapists (1) enhance quality of care, (2) improve patient/client satisfaction, (3) promote appropriate utilization of health care services, (4) increase efficiency and reduce unwarranted variation in the provision of services, and (5) promote cost reduction through prevention and wellness initiatives. The Guide also provides a framework for physical therapist clinicians and researchers as they refine outcomes data collection and analysis and develop questions for clinical research.

Appalachia is defined as a roughly 1,000-mile long region in the eastern United States nestled in and around the Appalachian mountains. It is roughly 205,000 square miles and contains all or parts of twelve states: Alabama, Georgia, Mississippi, Kentucky, Maryland, New York, Pennsylvania, Virginia, North Carolina, Tennessee, West Virginia, and Ohio. The area was home to about 25 million people as of the 2010 census. It is important to note that the region has struggled with outmigration since the 1930s beginning with the onset of the Great Depression. (Appalachian Regional Commission 2017). Historically, Appalachia has been known as a unique region in the United States. Beginning with roots as a common settlement region for fiery Scotch-Irish immigrants in the 1700s, continued by earning a reputation as a center for moonshine production during the 1930s, and now known as a region where the wealthy buy their second and third homes, the region has consistently been able to craft its own, particular culture. With a population that is 42% rural (compared to a 20% rural population for the entire U.S.) and overwhelmingly Scotch-Irish in ethnic composition, the area differs from the mainstream US. Beset by poverty, the region needs tourism to be a viable industry in many of its locales. A population that is relatively low in educational achievement (Appalachia as whole averages a 22% college completion rate per county compared with a US rate of 29% per county) and does not have easy access to intellectual resources in many places needs a stable, job-providing industry (Appalachian Regional Commission 2017). The area once had a legacy in the mining and forestry industries, but according to the Appalachian Regional Commission, that era has passed and people now rely on a rebirth of manufacturing, service industries, and tourism to provide jobs (2017). Fortunately, the situation in Appalachia has improved since 1960, as the number of economically distressed counties in the region has declined from 295 in 1960 to 91 in 2014 (Appalachian Regional Commission 2017). The poverty rate of 17.1% is slightly above the national average of 14.3% (Appalachian Regional Commission 2017). The region has come to increasingly depend on the tourism industry to fill an economic void as gaps in basic services and the continual draining of potential intellectual capital from population loss continue to plague the area. This paper will examine contemporary perspectives on tourism in the Appalachian region and analyze their economic and sociological effects.

Background: This project describes one healthcare system’s journey to expand the outreach of the Primary Stroke Center. Premier Health (PH) is a hospital system based in Dayton Ohio that provides services for over 2,200 stroke patients annually. Premier Health consists of 5 community hospitals 3 of which are Joint Commission certified Primary Stroke Centers. The requirement for Stroke Specialized Physicians on-call 24 hours a day had become more difficult with expansion of services to respond to community needs. With a limited number of Stroke Physicians within system, it was not feasible for available Physician’s to cover the 50 mile radius. A Tele-Stroke Network was developed to provide lifesaving services as well as 24/7 coverage for stroke call. Program results include synergistic unity of best practices and improved patient outcomes with the majority of patients remaining in their community. Purpose: Implement a Tele-Stroke System to provide specialty coverage and favorable patient outcomes for a Primary Stroke Center that provides coverage for a large region in the Midwest. Methods: In 2013 a stroke telehealtlh Clinical Nurse Specialist role was added and became pivotal in facilitating the following outcomes: 1) Restructuring of the Stroke Alert Call Schedules across the system. 2) Streamlining Stroke Alert Process across the system and redesign of work flows 3) Development of standard system order sets to streamline care delivery. 4) Providing IT training to end users and physicians at five hospitals. Results: • 304 Tele-Stroke consults conducted since implementation. • 33% increase in the volume of patient’s receiving T-PA • Average of 20 minutes reduction in Door to Needle for 2 of the 5 hospitals • Post telemedicine implementation there was a reduction in transfers from spoke hospitals to hub. On average, 83 % of the PH Tele-Stroke patients were able to stay in their respective communities while receiving Primary Stroke Center Care via telemedicine. Conclusion: Telemedicine implementation with standardization of stroke alert processes and order sets, restructuring of physician scheduling and IT training for the Primary Stroke Team resulted in improved t-PA use, lower door to needle time and reduction in unnecessary transfers of patients.

Abstract INTRODUCTION The State of Maryland implemented an All-Payer Global Budget Revenue (GBR) program in 2014. The policy shifted hospital reimbursement from diagnosis related groups (DRG) to set annual budgets prior to each fiscal year with the goal of reducing cost and utilization while improving patient outcomes. No studies have evaluated the impact on patients undergoing spine surgery, a growing population that can exhibit high costs. METHODS A retrospective review was conducted utilizing the Maryland Health Services Cost Review Commission Public use dataset to evaluate differences in hospital length of stay (LOS), 30 d readmissions, and disposition locations of patients undergoing elective spine surgery at hospitals under the GBR Program in Maryland from 2012 to 2018. Hierarchical regression modeling was used to evaluate the outcomes prior to and following policy implementation. Outcomes included mean LOS, odds of readmission, and the relative risk of discharge to home with home health care (HHC) or rehabilitation (Rehab) compared to home. Covariates included sex, age, race, complexity, and mortality risk. RESULTS A total of 31 068 records of elective spine surgery from 2012 to 2018 were identified. There was a statistically significant decrease in readmission rates following implementation of the global budget program, 2.57% to 2.02% P = .001. However, when clustering on hospitals, there was no significant difference in odds of readmission following policy implementation, Adjusted OR 0.76 (95% CI 0.48, 1.22). There was a statistically significant increase in the ratio of relative risks of discharge to HHC or Rehab comparing the period following policy implementation to before was 1.62 (95% CI 1.17, 2.23) and 2.07 (95% CI 1.38, 3.12), respectively. CONCLUSION A preliminary analysis demonstrates no change in hospital utilization, but an increase in risk of being discharged with ancillary services or to rehabilitation among spine fusion patients following policy implementation. Further analysis is warranted to determine changes in trends to inform future policies.

Hypothesis: Determining discharge patterns in the stroke population will assist in directing appropriate resources and patient outcomes. Methods: A retrospective review of 917 records was completed at a Joint Commission Certified Primary Stroke Center. Only patients with a confirmed diagnosis of stroke were included. Discharge destination was evaluated as well as NIHSS scores (which were then averaged) and stroke subtype. An assessment of rationale for patients not receiving Activase was also completed. Results: The following table illustrates the results of this review. This subset was further evaluated for non-treatment rationale; 80% arrived outside a treatment window; 13% were mild or rapidly improving; 5% had documented contraindications; the remaining 2% were a combination of patient refusal and missed opportunities. Interestingly, all missed opportunities resulted in discharge to SNF or AR. It appears, based on these data, clinical decisions made to withhold Activase in the setting of rapidly resolving symptoms did not result in further in-patient care in the majority of patients. Conclusions: Based on these data, nearly half of all strokes are discharged back into the community; an evaluation of available community and outpatient services may be beneficial. Further evaluation of potential barriers and opportunities to expand access to acute rehabilitation may be warranted. An evaluation of patients discharged to SNF may also be valuable to ensure discharge to most appropriate level of care to ensure best outcomes

Abstract Background A number of refugees and asylum seekers have increased dramatically in recent years. More than 250 million people worldwide are considered as refugees (United Nations High Commission for Refugees, 2018), among whom more than 50% are children. General health and especially psychological health of the refugee and asylum seeking children are an emerging, however, not well explored issues. In this study, we aimed to review the literature on the psychological health of refugee children. Methods We performed a literature search and descriptive analysis of studies published until July 2019, through MEDLINE and Science Direct databases. We identified literature on psychological health state of refugee and asylum seeking children. We analysed results of 16 studies. Results The study found that refugee children are facing severe psychological health issues, such as Post-traumatic stress disorder (PTSD), depression, anxiety, sleep disorders, behavioural problems. We identified 3 phases of psychological trauma and stress among refugee children: stress due to conflict in their home countries, stress during migration, and upon the arrival to host country. Our analysis reviled integration difficulties such as racism and bulling as important stress factors for the refugee children. Studies found that prevalence of PTSD is more than 54% among refugee children residing in Norway, significantly higher than in reference population. The studies identified the need of regular mental health assessment and preventive care, psychological counselling services for the refugee children. All included studies showed significantly higher stress among refugee children when compared to local children in host countries. Conclusions Rehabilitation services and follow-up supportive programs should be implemented to improve the mental health status of refugee children; these interventions will also contribute to their better integration. Key messages Screening and regular monitoring provided by host countries healthcare system is crucial to identify high risk children. More research is needed to better investigate the psychological health state and needs of refugee children.

This document constitutes the final report of work done by Prewitt and Associates, Inc. (PAI), under a contract from the Texas Department of Transportation (TxDOT) to provide archeological services in four TxDOT districts—Corpus Christi, Laredo, Pharr, and San Antonio. Under this contract, PAI completed Impact Evaluations and Surveys to assist TxDOT in meeting the requirements of their Memorandum of Understanding with the Texas Historical Commission and a Programmatic Agreement between the Advisory Council on Historic Preservation, the Federal Highway Administration, the Texas Historical Commission, and TxDOT. The contract began on March 17, 2003, and the last work authorization was issued on February 17, 2005. During those two years, fieldwork was done under 33 work authorizations. The 33 work authorizations consisted of 53 Impact Evaluations, 33 Surveys, and 2 Surveys with Geoarcheological Evaluation. Combined, these work authorizations entailed efforts at 47 bridge replacements, 4 bridge rehabilitation projects, 2 locations where new bridges will be built, 20 road rehabilitation or widening projects (many also involving bridge replacements or upgrades), 1 interstate highway rest area replacement, 3 drainage improvement projects, 2 curve realignment projects, 3 projects involving construction of new roads, 1 project involving construction of a railroad grade separation, 1 pedestrian bridge construction project, 1 project involving construction of a water taxi landing, 1 project involving construction of a hike-and-bike trail, 1 project involving modification of a highway interchange, and 1 project involving documentation of an archeological site disturbed by placement of a buried utility line. During completion of these work authorizations, 26 newly discovered or previously recorded archeological sites were investigated, although in the case of 9 previously recorded sites, no archeological remains were observed in the areas that will be impacted by the proposed Transportation Activities. Three of the Impact Evaluations led to recommendations that survey could be needed before construction, in some cases depending on whether new right of way would be required. The other 50 Impact Evaluations resulted in recommendations that no survey be required before construction based on the limited potential for sites with good integrity. Thirteen of the Surveys investigated a total of 3 newly recorded and 12 previously recorded sites. Of these 15 sites, 1 was considered eligible for listing in the National Register of Historic Places and designation as a State Archeological Landmark, and 1 was recommended as needing testing to assess eligibility. The other 33 Surveys either did not find any archeological sites, or they investigated sites that could be assessed as ineligible for National Register listing and State Archeological Landmark designation using the survey data. The records and artifacts generated by the project are curated at the Texas Archeological Research Laboratory.

The article deals with the problem of completeness of information on measures to counter terrorism and extremism taken by the labor-surplus states of Central Asia. With the help of some former labor migrants, a new model of terrorism (IS 2.0) is being developed based on the use of pendulum migration of radical Islamists to the countries of Central Asia and Russia, such Islamists serve as the core of various extremist organizations. A serious problem for the Russian experts is that none of the countries (Tajikistan, Kyrgyzstan or Uzbekistan) sending labor migrants to Russia publishes complex information each country publishes mainly statistical or regulatory information or news. For example, not all official documents are available in Tajikistan or Uzbekistan and it is difficult to obtain official statistics in Uzbekistan or Kyrgyzstan. Nevertheless, the analysis of the disparate experience of the three countries, among which we can highlight the purposeful work with labor migrants carried out by the representative offices of the Republic of Tajikistan abroad the courses for imams of mosques and clerics on the prevention of radicalization of the population organized by the State Commission for religious affairs of the Kyrgyz Republic and the system of social rehabilitation of repentant extremists in Uzbekistan prove the need for relevant information in a certain standardized form. The main sources of information used in the article are documents of the UN, the CIS Anti-Terrorist Center, speeches of the President of the Republic of Tajikistan containing statistical information, news information from the websites of the special services of the Kyrgyz Republic and legal documents of Uzbekistan. The article substantiates the conclusion about the need to highlight the information aspect in the formation of the anti-terrorist Eurasian space, the relevance of which was discussed at the Council of the CSTO Parliamentary Assembly in May 2019.

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

I sat alone on the beach under the shade of a big umbrella. My husband, Bill, and our three children were in the condo taking a break from the Florida sunshine. Dreamily, I gazed at the vast Gulf of Mexico, the brilliant blue sky stretching endlessly above. I was sitting about 50 feet from the surf, but I couldn't actually see the waves hitting the beach; I was almost blind. It was a windy day in late May and I loved feeling the ocean breeze sweeping over me. I imagined I could hear the waves crashing onto the surf, but the sound was only a memory. I was totally deaf. Although I had a cochlear implant and could hear the waves, the cry of sea gulls, and many other sounds with the technology, I wasn't wearing it at the moment and everything I heard was in my mind. As a child, my understanding of speech was better and my vision was clearer. My diagnosis was optic atrophy at age 5 and my vision gradually degenerated over the years. For unknown reasons, nerve damage caused hearing loss and during my teens, my hearing grew worse and worse until by the time I was ready for college, I was profoundly deaf. I chose to attend Gallaudet University because my high school teachers and my parents felt I would receive better services as a deaf and blind student. I feel it was a very good decision; when I entered Gallaudet, it was like entering a new and exhilarating world. Before attending Gallaudet, while I struggled to cope with hearing loss combined with severely low vision, my world grew smaller and smaller, not being able to communicate efficiently with others. At Gallaudet, I suddenly found I could communicate with almost anybody I met on campus using sign language. Thus, my self-confidence and independence grew as I proceeded to get a college education.It wasn't an easy route to follow. I didn't know Braille at the time and depended on using a CCTV (closed captioned television) electronic aid which magnified text, enabling me to read all my college books. I also relied on the assistance of a class aid who interpreted all my teachers' lectures and class discussions because I was unable to see people's signing unless they signed right in front of my face. It was slow going and often frustrating, trying to keep involved socially and keeping up with my coursework but when I was 13 years old, my vision specialist teacher who had worked with me from 5th grade until I graduated from high school, wrote a note for me saying, "Anything worthwhile seldom comes easy." The phrase stuck in my mind and I tried to follow this philosophy. In 1989 after 7 years of persistence, I graduated with a Bachelor's of Arts degree in psychology. With the B.A. in hand and having developed good communication skills with deaf and deaf-blind people using sign language and ASL (American Sign Language), I was ready to face the world. But I wasn't exactly ready; I knew I wanted a professional job working with deaf-blind people and the way to get there was to earn a master's degree. I applied for admission into Gallaudet's graduate school and was accepted into the vocational rehabilitation counselling program. While I thoroughly enjoyed graduate school experience, I got to work with my class mates one-on-one more often and there were a lot more hands-on activities, it became obvious to me that I wasn't prepared for graduate school. I needed to learn Braille and how to use Braille technology; my vision had worsened a lot since starting college. In addition, I needed a break from school and needed to gain experience in the working world. After completing one and a half years and earning 15 credit hours in the master's program, I left Gallaudet and found a job in Baltimore, Maryland.The job was with a new program for adults who were visually and hearing impaired and mentally disabled. My job was assisting the clients with independent living and work related skills. Most of the other staff were deaf, communicating via ASL. By then, I was skilled using tactile signing, putting my hand on the back of the signer's hand to follow movements by touch, and I made friends with co-workers. I felt grown up and independent working full-time, living in my own apartment, using the subway train and bus to travel to and from work. I didn't have any serious problems living on my own. There was a supermarket up the road to which I could walk or ride a bus. But I needed a taxi ride back to the apartment when I had more groceries than I could carry. I would leave a sign I made out of cardboard and wrote my address in big black numbers, on my apartment door to help the driver find my place. I used a white cane and upon moving to Baltimore, an Orientation and Mobility (O and M) teacher who worked with blind people, showing them how to travel in the city, taught me the route to my work place using the subway and bus. Thus, I was independent and knew my way to work as well as to a nearby shopping mall. One day as I stood on the subway station platform holding my white cane, waiting for my train, the opposite train pulled in. As I stood watching passengers hurrying to board, knowing my train would arrive soon on the other side, a woman ran up to me and started pulling my arm. I handed her my notebook and black marker I used for communicating with people in the public, telling her I couldn't hear and would she please write in large print? She frantically scribbled something, but I couldn't read the note. She then gave me back the pen and pad, grabbed my arm again and started pulling me towards the train. I refused to budge, gesturing towards the opposite tracks, clearly indicating I was waiting for the other train. Finally, she let go, dashed into the train before the doors closed. I watched the train pull away, sadly reflecting that some people who wanted to help, just didn't understand how to approach disabled people. As a deaf-blind traveller, it was my duty to help educate the general public how to assist disabled persons in a humane way. After I established my new life for a few months, Bill was offered a position in the same program and moved to Baltimore to join me. He had worked at the Helen Keller National Centre in New York where I met him while doing a summer internship there three years before. I was thrilled when he got the job working beside me and we got to know each other on a daily basis. We had been dating since we met although I was in college and he was working and living in New York and then Cleveland, Ohio. Bill being hearing and sighted, was skilled in sign language and communication techniques with deaf-blind people. He had a wonderful attitude towards disabled people and made me feel like a normal person who was capable of doing things. We shared a lot and were very comfortable with each other. After nearly six months together in Baltimore, we married in May 1992, several weeks before my 28th birthday.After our first year of marriage living in Maryland, Bill and I moved to Little Rock, Arkansas. We wanted to live closer to my family and parents, Ron and Judy Cummings, who lived in Poplar Bluff, Missouri, 176 miles north of Little Rock. I wanted to go back to school and entered the deaf education program at the University of Arkansas at Little Rock with the goal of becoming a teacher for deaf-blind students. I never dreamed I would have a deaf-blind child of my own one day. My vision and hearing loss were caused by nerve damage and no one else in my family nor Bill's had a similar disability.I was pregnant with our first child when I entered UALR. In spite of my growing belly, I enjoyed the teacher training experience. I worked with a deaf-blind 12-year-old student and her teacher at the Arkansas School for the Deaf; observed two energetic four-year-olds in the pre-school program. But when my son, Joe was born in June 1994, my world changed once again. School became less important and motherhood became the ultimate. As a deaf-blind person, I wanted to be the best mom within my abilities.I decided that establishing good communication with my child was an important aspect of being a deaf-blind mom. Bill was in full agreement and we would set Joe on the kitchen table in his infant carrier, reciting together in sign language, "The three Bears". I could see Joe's tiny fists and feet wave excitedly in the air as he watched us signing children's stories. I would encourage Joe to hold my fingers while I signed to him, trying to establish a tactile signing relationship. But he was almost two years old when he finally understood that he needed to sign into my hands. We were sitting at the table and I had a bag of cookies. I refused to give him one until he made the sign for "cookie" in my hand. I quickly rewarded him with a cookie and he got three or four each time he made the sign in my hand. Today at 16, Joe is an expert finger speller and can effectively communicate with me and his younger deaf-blind brother, Ben.When Joe was two and a half, I decided to explore a cochlear implant. It was 1996 and we were living in Poplar Bluff by then. My cousin, who was studying audiology, told me that people using cochlear implants were able to understand sound so well they didn't need good vision. I made an appointment with the St. Louis cochlear implant program and after being evaluated, I decided to go ahead. I am glad I have a cochlear implant. After months of practice I learned to use the new sound and was eventually able to understand many environmental sounds. I never regained the ability of understanding speech, though, but I could hear people's voices very clearly, the sound of laughter, birds singing, and many more. Being able to hear my children's voices is especially wonderful, even when they get noisy and I get a headache. That fall I went to Leader Dogs School for the Blind (LDSB) where I met Milo, a large yellow Labrador retriever. At LDSB I learned how to care for and work with a dog guide. Having Milo as my companion and guide was like stepping into another new and wonderful world of independence. With Milo, I could walk briskly and feel secure. Milo was a big help as a deaf-blind mom, too. With Milo's guiding help, it was wonderful following my children while they rode tricycles or bikes and the whole family enjoyed going out for walks together. Our second son, Ben, was born in February 1999. He was a perfectly healthy little boy and Bill and I were looking forward to raising two sons. Joe was four and a half years old when Ben was born and was fascinated in his new brother. But when Ben was 5 months old, he was diagnosed with Langerhans Cell Histiocytosis (LCH), a rare childhood disease and in some cases, fatal. It was a long, scary road we followed as Ben received treatment at the children's hospital in St. Louis which involved making the 150 mile trip almost weekly for chemotherapy and doctor check-ups. Through it all, Ben was a happy little boy, in spite of the terrible rash that affected his scalp and diaper area, a symptom of LCH. Bill and I knew that we had to do everything possible to help Ben. When he was a year old, his condition seemed stable enough for me to feel comfortable leaving my family for two months to study Braille and learn new technology skills at a program in Kansas City. My vision had deteriorated to a point where I could no longer use a CCTV.Bill's mom, Marie Reid, who lived in Cleveland, Ohio, made a special trip to stay at our home in Poplar Bluff to help Bill with the boys while I was gone. I was successful at the program, learning Braille, making a change from magnification to Braille technology. Upon returning home, I began looking for a job and found employment as a deaf-blind specialist in a new project in Mississippi. The job was in Tupelo and we moved to northern Mississippi, settling into a new life. We transferred Ben's treatment to St. Judes Children's hospital located in Memphis, 94 miles west of Tupelo. I went to work and Bill stayed home with the boys, which worked well. When Ben had to go to St. Judes every three weeks for chemotherapy, Bill was able to drive him. The treatment was successful, the rash had disappeared and there were no traces of LCH in Ben's blood tests. But when he was almost 3 years old, he was diagnosed with optic atrophy, the same eye disease I suffered from and an audiologist detected signs of inner ear hearing loss.Shocked at the news that our little son would grow up legally blind and perhaps become deaf, Bill and I had to rethink our future. We knew we wanted Ben to have a good life and as a deaf-blind child, he needed quality services. We chose to move to Pittsburgh, Pennsylvania because I knew there were good services for deaf-blind people and I could function independently as a stay-home mom. In addition, Cleveland, Ohio, where Marie Reid and several of Bill's siblings lived, was a two hour's drive from Pittsburgh and living near family was important to us. With regret, I left my job opportunity and new friends and we re-located to Pittsburgh. We lived on a quiet street near Squirrel Hill and enrolled Joe into a near-by Catholic school. Ben received excellent early intervention services through the Pittsburgh public school, beginning Braille, using a white cane and tactile signing. The Pennsylvania services for the blind generously purchased a wonderful computer system and Braille display for me to use at home. I was able to communicate with Joe's and Ben's teachers and other contacts using e-mail. Ben's Braille teacher provided us with several print/Braille books which I read to the boys while Ben touched the tactile pictures. I made friends in the deaf and deaf-blind community and our family attended social events. Besides the social benefits of a deaf community, Pittsburgh offered a wonderful interpreting service and I was able to take Ben to doctor appointments knowing an interpreter would meet me at the hospital to assist with communication. I also found people who were willing to help me as volunteer SSPs (support Service Providers), persons whose role is to assist a deaf-blind person in any way, such as shopping, going to the bank, etc. Thus, I was able to function quite independently while Bill worked. Perhaps Bill and I were a bit crazy; after all, we had enough on our plate with a deaf-blind son and a deaf-blind mom, but love is a mysterious thing. In October 2003, Tim was born and our family was complete. Having two school-aged children and a baby on my hands was too much for me to handle alone. Bill was working and busy with culinary arts school. We realized we needed more help with the children, plus the high cost of living in the city was a struggle for us. We decided for the family's best interest, it would be better to move back to Poplar Bluff. After Joe and Ben were out of school in June, my mom flew out to Pittsburgh to escort them back to her home while Bill finished his externship for his culinary arts degree and in the late summer of 2004, we packed up our apartment, said good-bye to Pittsburgh, and drove to Missouri. The move was a good decision in many ways. Poplar Bluff, a rural town in south-eastern Missouri, has been my hometown since I was 10 years old. My extended family live there and the boys are thriving growing up among their cousins. Ben is receiving Braille and sign language services at public school and reads Braille faster than me!While both Bill and I are deeply satisfied knowing our children are happy, we have made personal sacrifices. Bill has given up his career satisfaction as a professional cook, needing to help look after the children and house. I have given up the benefits of city life such as interpreting and SSP services, not to mention the social benefits of a deaf community. But the children's well-being comes first, and I have found ways to fulfil my needs by getting involved with on-line groups for deaf-blind people, including writers and poets. I have taken a great interest in writing, especially children's stories and hope to establish a career as a writer. While I work on my computer, Bill keeps busy engaging the boys in various projects. They have built a screened-in tree house in the backyard where Ben and Tim like to sleep during warm summer nights.“It's almost 5 o'clock," Bill signed into my hand, rousing me from my thoughts. Time to prepare for our homeward journey the next day to Poplar Bluff, Missouri.Christy and Family

Horizon Environmental Services, Inc. (Horizon) was selected by LJA Engineering, Inc. (LJA), on behalf of the City of Conroe, to conduct a cultural resources inventory and assessment for the proposed Stewarts Creek Wastewater System Improvements Project in Conroe, Montgomery County, Texas. The proposed undertaking would consist of rehabilitating and replacing approximately 2.1 kilometers (1.3 miles) of existing gravity sewer pipeline that runs along the western terraces of Stewarts Creek in the southeastern portion of Conroe. The segment of the existing sewer line proposed for rehabilitation and replacement runs along the western terraces of Stewarts Creek extending from Avenue M southward to an existing transmission line right-of-way (ROW) located southeast of the intersection of Foster Drive and Ed Kharbat Drive. For purposes of the cultural resources survey, the project area was considered to consist of a linear project corridor measuring 2.1 kilometers (1.3 miles) in length by 39.6 meters (130.0 feet) in width, covering a total area of 8.3 hectares (20.4 acres). The proposed undertaking would be sponsored by the City of Conroe, which represents a political subdivision of the state of Texas. As such, the project falls under the jurisdiction of the Antiquities Code of Texas. In addition, the project may require the use of Nationwide Permits (NWP) issued by the US Army Corps of Engineers (USACE), Galveston District, for construction within or adjacent to any water features that meet the criteria for designation as “waters of the US” under Section 404 of the Clean Water Act and/or Section 10 of the Rivers and Harbors Act. As NWPs are federal permits, those portions of the overall project area located within the federal permit area would fall under the jurisdiction of Section 106 of the National Historic Preservation Act (NHPA) of 1966, as amended. As the proposed project represents a publicly sponsored undertaking, the project sponsor is required to provide the applicable federal agencies and the Texas Historical Commission (THC), which serves as the State Historic Preservation Office (SHPO) for the state of Texas, with an opportunity to review and comment on the project’s potential to adversely affect historic properties listed on or considered eligible for listing on the National Register of Historic Places (NRHP) and/or for designation as State Antiquities Landmarks (SAL). On April 1 to 2, 2020, Horizon archeologists Colene Knaub and Elizabeth Sefton, under the overall direction of Jeffrey D. Owens, Principal Investigator, performed an intensive cultural resources survey of the project area to locate any cultural resources that potentially would be impacted by the proposed undertaking. The survey was performed under Texas Antiquities Permit No. 9336. Horizon’s archeologists traversed the archeological survey area on foot and thoroughly inspected the modern ground surface for aboriginal and historic-age cultural resources. The survey area consisted of an existing gravity sewer ROW running along the western terraces of Stewarts Creek. Most of the sewer line ROW consisted of broad, cleared areas characterized by short, manicured grasses, though some segments of the ROW appear not to have been regularly maintained and had become heavily overgrown with tall grasses, weeds, and wildflowers. Large concrete manholes providing access to the existing sewer line are spaced at regular intervals along this utility corridor. The ROW crosses Silverdale Drive, Foster Drive, and an electrical transmission line, and four large stock ponds are present adjacent to the ROW that involved extensive earth-moving activities within the project corridor. Prior disturbances within the existing sewer line corridor associated with construction and maintenance of the existing sewer line, stock ponds, intersecting roadways, and the transmission line have been extensive. Overall, ground surface visibility was generally poor (<30%) due to dense vegetative ground cover. In addition to pedestrian walkover, the Texas State Minimum Archeological Survey Standards (TSMASS) require a minimum of 10 shovel tests per 1.0 kilometer (16 shovel tests per 1.0 mile) for linear projects per 30.5-meter (100.0-foot) width of ROW, or fraction thereof. As such, a minimum of 42 shovel tests would be required within the 2.1-kilometer- (1.3-mile-) long by 39.6-meter- (130.0-foot-) wide project area. Horizon excavated 44 shovel tests during the survey, thereby exceeding the TSMASS requirements for a project area of this size. Shovel tests were staggered along either side of the existing sewer line as evidenced by the locations of manholes in an effort to test sediments that potentially had been less disturbed by the original construction of the sewer line. Shovel testing typically revealed mixed brown to yellowish-brown sandy loam and sandy sediments with rare hematitic sandstone and oyster shell fragment inclusions. Mottling and mixing was observed in virtually every shovel test, suggesting that sediments within the survey corridor had been disturbed during the original construction of the sewer line. Given the extent of disturbance observed within the shovel tests excavated during the survey, it is Horizon’s opinion that sediments within the proposed disturbance zone associated with rehabilitation and replacement of the existing sewer line have been disturbed to the depth of the existing pipeline and have minimal potential to contain any intact archeological deposits. Furthermore, a prior survey was conducted for the City of Conroe in 2001 that included mechanical deep testing, though this survey did not result in the documentation of any cultural resources along this segment of Stewarts Creek. As such, it is Horizon’s opinion that the shovel testing was capable of evaluating the potential of the project area to contain prehistoric and historic-age cultural resources with the potential to meet the criteria of significance for inclusion in the NRHP and for designation as SALs. No cultural resources, prehistoric or historic-age, were observed on the modern ground surface or within any of the shovel tests excavated within the project area. As no cultural resources were observed during the survey, no cultural resources were collected. Following completion of the project, all project records will be prepared for permanent curation at the Texas Archeological Research Laboratory (TARL). Based on the results of the survey-level investigations documented in this report, no potentially significant cultural resources would be affected by the proposed undertaking. In accordance with 36 CFR 800.4, Horizon has made a reasonable and good-faith effort to identify historic properties within the project area. No cultural resources were identified within the project area that meet the criteria for designation as SALs according to 13 TAC 26 or for inclusion in the NRHP under 36 CFR 60.4. Horizon recommends a finding of “no historic properties affected,” and no further archeological work is recommended in connection with the proposed undertaking. However, human burials, both prehistoric and historic, are protected under the Texas Health and Safety Code. In the event that any human remains or burial objects are inadvertently discovered at any point during construction, use, or ongoing maintenance in the project area, even in previously surveyed areas, all work should cease immediately in the vicinity of the inadvertent discovery, and the THC should be notified immediately.

A same-but-different dichotomy has recently been encapsulated within the US Food and Drug Administration’s ill-defined concept of “substantial equivalence” (USFDA, FDA). By invoking this concept the genetically modified organism (GMO) industry has escaped the rigors of safety testing that might otherwise apply. The curious concept of “substantial equivalence” grants a presumption of safety to GMO food. This presumption has yet to be earned, and has been used to constrain labelling of both GMO and non-GMO food. It is an idea that well serves corporatism. It enables the claim of difference to secure patent protection, while upholding the contrary claim of sameness to avoid labelling and safety scrutiny. It offers the best of both worlds for corporate food entrepreneurs, and delivers the worst of both worlds to consumers. The term “substantial equivalence” has established its currency within the GMO discourse. As the opportunities for patenting food technologies expand, the GMO recruitment of this concept will likely be a dress rehearsal for the developing debates on the labelling and testing of other techno-foods – including nano-foods and clone-foods. “Substantial Equivalence” “Are the Seven Commandments the same as they used to be, Benjamin?” asks Clover in George Orwell’s “Animal Farm”. By way of response, Benjamin “read out to her what was written on the wall. There was nothing there now except a single Commandment. It ran: ALL ANIMALS ARE EQUAL BUT SOME ANIMALS ARE MORE EQUAL THAN OTHERS”. After this reductionist revelation, further novel and curious events at Manor Farm, “did not seem strange” (Orwell, ch. X). Equality is a concept at the very core of mathematics, but beyond the domain of logic, equality becomes a hotly contested notion – and the domain of food is no exception. A novel food has a regulatory advantage if it can claim to be the same as an established food – a food that has proven its worth over centuries, perhaps even millennia – and thus does not trigger new, perhaps costly and onerous, testing, compliance, and even new and burdensome regulations. On the other hand, such a novel food has an intellectual property (IP) advantage only in terms of its difference. And thus there is an entrenched dissonance for newly technologised foods, between claiming sameness, and claiming difference. The same/different dilemma is erased, so some would have it, by appeal to the curious new dualist doctrine of “substantial equivalence” whereby sameness and difference are claimed simultaneously, thereby creating a win/win for corporatism, and a loss/loss for consumerism. This ground has been pioneered, and to some extent conquered, by the GMO industry. The conquest has ramifications for other cryptic food technologies, that is technologies that are invisible to the consumer and that are not evident to the consumer other than via labelling. Cryptic technologies pertaining to food include GMOs, pesticides, hormone treatments, irradiation and, most recently, manufactured nano-particles introduced into the food production and delivery stream. Genetic modification of plants was reported as early as 1984 by Horsch et al. The case of Diamond v. Chakrabarty resulted in a US Supreme Court decision that upheld the prior decision of the US Court of Customs and Patent Appeal that “the fact that micro-organisms are alive is without legal significance for purposes of the patent law”, and ruled that the “respondent’s micro-organism plainly qualifies as patentable subject matter”. This was a majority decision of nine judges, with four judges dissenting (Burger). It was this Chakrabarty judgement that has seriously opened the Pandora’s box of GMOs because patenting rights makes GMOs an attractive corporate proposition by offering potentially unique monopoly rights over food. The rear guard action against GMOs has most often focussed on health repercussions (Smith, Genetic), food security issues, and also the potential for corporate malfeasance to hide behind a cloak of secrecy citing commercial confidentiality (Smith, Seeds). Others have tilted at the foundational plank on which the economics of the GMO industry sits: “I suggest that the main concern is that we do not want a single molecule of anything we eat to contribute to, or be patented and owned by, a reckless, ruthless chemical organisation” (Grist 22). The GMO industry exhibits bipolar behaviour, invoking the concept of “substantial difference” to claim patent rights by way of “novelty”, and then claiming “substantial equivalence” when dealing with other regulatory authorities including food, drug and pesticide agencies; a case of “having their cake and eating it too” (Engdahl 8). This is a clever slight-of-rhetoric, laying claim to the best of both worlds for corporations, and the worst of both worlds for consumers. Corporations achieve patent protection and no concomitant specific regulatory oversight; while consumers pay the cost of patent monopolization, and are not necessarily apprised, by way of labelling or otherwise, that they are purchasing and eating GMOs, and thereby financing the GMO industry. The lemma of “substantial equivalence” does not bear close scrutiny. It is a fuzzy concept that lacks a tight testable definition. It is exactly this fuzziness that allows lots of wriggle room to keep GMOs out of rigorous testing regimes. Millstone et al. argue that “substantial equivalence is a pseudo-scientific concept because it is a commercial and political judgement masquerading as if it is scientific. It is moreover, inherently anti-scientific because it was created primarily to provide an excuse for not requiring biochemical or toxicological tests. It therefore serves to discourage and inhibit informative scientific research” (526). “Substantial equivalence” grants GMOs the benefit of the doubt regarding safety, and thereby leaves unexamined the ramifications for human consumer health, for farm labourer and food-processor health, for the welfare of farm animals fed a diet of GMO grain, and for the well-being of the ecosystem, both in general and in its particularities. “Substantial equivalence” was introduced into the food discourse by an Organisation for Economic Co-operation and Development (OECD) report: “safety evaluation of foods derived by modern biotechnology: concepts and principles”. It is from this document that the ongoing mantra of assumed safety of GMOs derives: “modern biotechnology … does not inherently lead to foods that are less safe … . Therefore evaluation of foods and food components obtained from organisms developed by the application of the newer techniques does not necessitate a fundamental change in established principles, nor does it require a different standard of safety” (OECD, “Safety” 10). This was at the time, and remains, an act of faith, a pro-corporatist and a post-cautionary approach. The OECD motto reveals where their priorities lean: “for a better world economy” (OECD, “Better”). The term “substantial equivalence” was preceded by the 1992 USFDA concept of “substantial similarity” (Levidow, Murphy and Carr) and was adopted from a prior usage by the US Food and Drug Agency (USFDA) where it was used pertaining to medical devices (Miller). Even GMO proponents accept that “Substantial equivalence is not intended to be a scientific formulation; it is a conceptual tool for food producers and government regulators” (Miller 1043). And there’s the rub – there is no scientific definition of “substantial equivalence”, no scientific test of proof of concept, and nor is there likely to be, since this is a ‘spinmeister’ term. And yet this is the cornerstone on which rests the presumption of safety of GMOs. Absence of evidence is taken to be evidence of absence. History suggests that this is a fraught presumption. By way of contrast, the patenting of GMOs depends on the antithesis of assumed ‘sameness’. Patenting rests on proven, scrutinised, challengeable and robust tests of difference and novelty. Lightfoot et al. report that transgenic plants exhibit “unexpected changes [that] challenge the usual assumptions of GMO equivalence and suggest genomic, proteomic and metanomic characterization of transgenics is advisable” (1). GMO Milk and Contested Labelling Pesticide company Monsanto markets the genetically engineered hormone rBST (recombinant Bovine Somatotropin; also known as: rbST; rBGH, recombinant Bovine Growth Hormone; and the brand name Prosilac) to dairy farmers who inject it into their cows to increase milk production. This product is not approved for use in many jurisdictions, including Europe, Australia, New Zealand, Canada and Japan. Even Monsanto accepts that rBST leads to mastitis (inflammation and pus in the udder) and other “cow health problems”, however, it maintains that “these problems did not occur at rates that would prohibit the use of Prosilac” (Monsanto). A European Union study identified an extensive list of health concerns of rBST use (European Commission). The US Dairy Export Council however entertain no doubt. In their background document they ask “is milk from cows treated with rBST safe?” and answer “Absolutely” (USDEC). Meanwhile, Monsanto’s website raises and answers the question: “Is the milk from cows treated with rbST any different from milk from untreated cows? No” (Monsanto). Injecting cows with genetically modified hormones to boost their milk production remains a contested practice, banned in many countries. It is the claimed equivalence that has kept consumers of US dairy products in the dark, shielded rBST dairy farmers from having to declare that their milk production is GMO-enhanced, and has inhibited non-GMO producers from declaring their milk as non-GMO, non rBST, or not hormone enhanced. This is a battle that has simmered, and sometimes raged, for a decade in the US. Finally there is a modest victory for consumers: the Pennsylvania Department of Agriculture (PDA) requires all labels used on milk products to be approved in advance by the department. The standard issued in October 2007 (PDA, “Standards”) signalled to producers that any milk labels claiming rBST-free status would be rejected. This advice was rescinded in January 2008 with new, specific, department-approved textual constructions allowed, and ensuring that any “no rBST” style claim was paired with a PDA-prescribed disclaimer (PDA, “Revised Standards”). However, parsimonious labelling is prohibited: No labeling may contain references such as ‘No Hormones’, ‘Hormone Free’, ‘Free of Hormones’, ‘No BST’, ‘Free of BST’, ‘BST Free’,’No added BST’, or any statement which indicates, implies or could be construed to mean that no natural bovine somatotropin (BST) or synthetic bovine somatotropin (rBST) are contained in or added to the product. (PDA, “Revised Standards” 3) Difference claims are prohibited: In no instance shall any label state or imply that milk from cows not treated with recombinant bovine somatotropin (rBST, rbST, RBST or rbst) differs in composition from milk or products made with milk from treated cows, or that rBST is not contained in or added to the product. If a product is represented as, or intended to be represented to consumers as, containing or produced from milk from cows not treated with rBST any labeling information must convey only a difference in farming practices or dairy herd management methods. (PDA, “Revised Standards” 3) The PDA-approved labelling text for non-GMO dairy farmers is specified as follows: ‘From cows not treated with rBST. No significant difference has been shown between milk derived from rBST-treated and non-rBST-treated cows’ or a substantial equivalent. Hereinafter, the first sentence shall be referred to as the ‘Claim’, and the second sentence shall be referred to as the ‘Disclaimer’. (PDA, “Revised Standards” 4) It is onto the non-GMO dairy farmer alone, that the costs of compliance fall. These costs include label preparation and approval, proving non-usage of GMOs, and of creating and maintaining an audit trail. In nearby Ohio a similar consumer versus corporatist pantomime is playing out. This time with the Ohio Department of Agriculture (ODA) calling the shots, and again serving the GMO industry. The ODA prescribed text allowed to non-GMO dairy farmers is “from cows not supplemented with rbST” and this is to be conjoined with the mandatory disclaimer “no significant difference has been shown between milk derived from rbST-supplemented and non-rbST supplemented cows” (Curet). These are “emergency rules”: they apply for 90 days, and are proposed as permanent. Once again, the onus is on the non-GMO dairy farmers to document and prove their claims. GMO dairy farmers face no such governmental requirements, including no disclosure requirement, and thus an asymmetric regulatory impost is placed on the non-GMO farmer which opens up new opportunities for administrative demands and technocratic harassment. Levidow et al. argue, somewhat Eurocentrically, that from its 1990s adoption “as the basis for a harmonized science-based approach to risk assessment” (26) the concept of “substantial equivalence” has “been recast in at least three ways” (58). It is true that the GMO debate has evolved differently in the US and Europe, and with other jurisdictions usually adopting intermediate positions, yet the concept persists. Levidow et al. nominate their three recastings as: firstly an “implicit redefinition” by the appending of “extra phrases in official documents”; secondly, “it has been reinterpreted, as risk assessment processes have … required more evidence of safety than before, especially in Europe”; and thirdly, “it has been demoted in the European Union regulatory procedures so that it can no longer be used to justify the claim that a risk assessment is unnecessary” (58). Romeis et al. have proposed a decision tree approach to GMO risks based on cascading tiers of risk assessment. However what remains is that the defects of the concept of “substantial equivalence” persist. Schauzu identified that: such decisions are a matter of “opinion”; that there is “no clear definition of the term ‘substantial’”; that because genetic modification “is aimed at introducing new traits into organisms, the result will always be a different combination of genes and proteins”; and that “there is no general checklist that could be followed by those who are responsible for allowing a product to be placed on the market” (2). Benchmark for Further Food Novelties? The discourse, contestation, and debate about “substantial equivalence” have largely focussed on the introduction of GMOs into food production processes. GM can best be regarded as the test case, and proof of concept, for establishing “substantial equivalence” as a benchmark for evaluating new and forthcoming food technologies. This is of concern, because the concept of “substantial equivalence” is scientific hokum, and yet its persistence, even entrenchment, within regulatory agencies may be a harbinger of forthcoming same-but-different debates for nanotechnology and other future bioengineering. The appeal of “substantial equivalence” has been a brake on the creation of GMO-specific regulations and on rigorous GMO testing. The food nanotechnology industry can be expected to look to the precedent of the GMO debate to head off specific nano-regulations and nano-testing. As cloning becomes economically viable, then this may be another wave of food innovation that muddies the regulatory waters with the confused – and ultimately self-contradictory – concept of “substantial equivalence”. Nanotechnology engineers particles in the size range 1 to 100 nanometres – a nanometre is one billionth of a metre. This is interesting for manufacturers because at this size chemicals behave differently, or as the Australian Office of Nanotechnology expresses it, “new functionalities are obtained” (AON). Globally, government expenditure on nanotechnology research reached US$4.6 billion in 2006 (Roco 3.12). While there are now many patents (ETC Group; Roco), regulation specific to nanoparticles is lacking (Bowman and Hodge; Miller and Senjen). The USFDA advises that nano-manufacturers “must show a reasonable assurance of safety … or substantial equivalence” (FDA). A recent inventory of nano-products already on the market identified 580 products. Of these 11.4% were categorised as “Food and Beverage” (WWICS). This is at a time when public confidence in regulatory bodies is declining (HRA). In an Australian consumer survey on nanotechnology, 65% of respondents indicated they were concerned about “unknown and long term side effects”, and 71% agreed that it is important “to know if products are made with nanotechnology” (MARS 22). Cloned animals are currently more expensive to produce than traditional animal progeny. In the course of 678 pages, the USFDA Animal Cloning: A Draft Risk Assessment has not a single mention of “substantial equivalence”. However the Federation of Animal Science Societies (FASS) in its single page “Statement in Support of USFDA’s Risk Assessment Conclusion That Food from Cloned Animals Is Safe for Human Consumption” states that “FASS endorses the use of this comparative evaluation process as the foundation of establishing substantial equivalence of any food being evaluated. It must be emphasized that it is the food product itself that should be the focus of the evaluation rather than the technology used to generate cloned animals” (FASS 1). Contrary to the FASS derogation of the importance of process in food production, for consumers both the process and provenance of production is an important and integral aspect of a food product’s value and identity. Some consumers will legitimately insist that their Kalamata olives are from Greece, or their balsamic vinegar is from Modena. It was the British public’s growing awareness that their sugar was being produced by slave labour that enabled the boycotting of the product, and ultimately the outlawing of slavery (Hochschild). When consumers boycott Nestle, because of past or present marketing practices, or boycott produce of USA because of, for example, US foreign policy or animal welfare concerns, they are distinguishing the food based on the narrative of the food, the production process and/or production context which are a part of the identity of the food. Consumers attribute value to food based on production process and provenance information (Paull). Products produced by slave labour, by child labour, by political prisoners, by means of torture, theft, immoral, unethical or unsustainable practices are different from their alternatives. The process of production is a part of the identity of a product and consumers are increasingly interested in food narrative. It requires vigilance to ensure that these narratives are delivered with the product to the consumer, and are neither lost nor suppressed. Throughout the GM debate, the organic sector has successfully skirted the “substantial equivalence” debate by excluding GMOs from the certified organic food production process. This GMO-exclusion from the organic food stream is the one reprieve available to consumers worldwide who are keen to avoid GMOs in their diet. The organic industry carries the expectation of providing food produced without artificial pesticides and fertilizers, and by extension, without GMOs. Most recently, the Soil Association, the leading organic certifier in the UK, claims to be the first organisation in the world to exclude manufactured nonoparticles from their products (Soil Association). There has been the call that engineered nanoparticles be excluded from organic standards worldwide, given that there is no mandatory safety testing and no compulsory labelling in place (Paull and Lyons). The twisted rhetoric of oxymorons does not make the ideal foundation for policy. Setting food policy on the shifting sands of “substantial equivalence” seems foolhardy when we consider the potentially profound ramifications of globally mass marketing a dysfunctional food. If there is a 2×2 matrix of terms – “substantial equivalence”, substantial difference, insubstantial equivalence, insubstantial difference – while only one corner of this matrix is engaged for food policy, and while the elements remain matters of opinion rather than being testable by science, or by some other regime, then the public is the dupe, and potentially the victim. “Substantial equivalence” has served the GMO corporates well and the public poorly, and this asymmetry is slated to escalate if nano-food and clone-food are also folded into the “substantial equivalence” paradigm. Only in Orwellian Newspeak is war peace, or is same different. It is time to jettison the pseudo-scientific doctrine of “substantial equivalence”, as a convenient oxymoron, and embrace full disclosure of provenance, process and difference, so that consumers are not collateral in a continuing asymmetric knowledge war. References Australian Office of Nanotechnology (AON). 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Hart Research Associates, 25 Sep. 2007.Levidow, Les, Joseph Murphy, and Susan Carr. “Recasting ‘Substantial Equivalence’: Transatlantic Governance of GM Food.” Science, Technology, and Human Values 32.1 (Jan. 2007): 26-64.Lightfoot, David, Rajsree Mungur, Rafiqa Ameziane, Anthony Glass, and Karen Berhard. “Transgenic Manipulation of C and N Metabolism: Stretching the GMO Equivalence.” American Society of Plant Biologists Conference: Plant Biology, 2000.MARS. “Final Report: Australian Community Attitudes Held about Nanotechnology – Trends 2005-2007.” Report prepared for Department of Industry, Tourism and Resources (DITR). Miranda, NSW: Market Attitude Research Services, 12 June 2007.Miller, Georgia, and Rye Senjen. “Out of the Laboratory and on to Our Plates: Nanotechnology in Food and Agriculture.” Friends of the Earth, 2008. 24 Apr. 2008 < http://nano.foe.org.au/node/220 >.Miller, Henry. “Substantial Equivalence: Its Uses and Abuses.” Nature Biotechnology 17 (7 Nov. 1999): 1042-1043.Millstone, Erik, Eric Brunner, and Sue Mayer. “Beyond ‘Substantial Equivalence’.” Nature 401 (7 Oct. 1999): 525-526.Monsanto. “Posilac, Bovine Somatotropin by Monsanto: Questions and Answers about bST from the United States Food and Drug Administration.” 2007. 24 Apr. 2008 < http://www.monsantodairy.com/faqs/fda_safety.html >.Organisation for Economic Co-operation and Development (OECD). “For a Better World Economy.” Paris: OECD, 2008. 24 Apr. 2008 < http://www.oecd.org/ >.———. “Safety Evaluation of Foods Derived by Modern Biotechnology: Concepts and Principles.” Paris: OECD, 1993.Orwell, George. Animal Farm. 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Bureau of Food Safety and Laboratory Services, Pennsylvania Department of Agriculture, 22 Oct. 2007.Roco, Mihail. “National Nanotechnology Initiative – Past, Present, Future.” In William Goddard, Donald Brenner, Sergy Lyshevski and Gerald Iafrate, eds. Handbook of Nanoscience, Engineering and Technology. 2nd ed. Boca Raton, FL: CRC Press, 2007.Romeis, Jorg, Detlef Bartsch, Franz Bigler, Marco Candolfi, Marco Gielkins, et al. “Assessment of Risk of Insect-Resistant Transgenic Crops to Nontarget Arthropods.” Nature Biotechnology 26.2 (Feb. 2008): 203-208.Schauzu, Marianna. “The Concept of Substantial Equivalence in Safety Assessment of Food Derived from Genetically Modified Organisms.” AgBiotechNet 2 (Apr. 2000): 1-4.Soil Association. “Soil Association First Organisation in the World to Ban Nanoparticles – Potentially Toxic Beauty Products That Get Right under Your Skin.” London: Soil Association, 17 Jan. 2008. 24 Apr. 2008 < http://www.soilassociation.org/web/sa/saweb.nsf/848d689047 cb466780256a6b00298980/42308d944a3088a6802573d100351790!OpenDocument >.Smith, Jeffrey. Genetic Roulette: The Documented Health Risks of Genetically Engineered Foods. Fairfield, Iowa: Yes! Books, 2007.———. Seeds of Deception. Melbourne: Scribe, 2004.U.S. Dairy Export Council (USDEC). Bovine Somatotropin (BST) Backgrounder. Arlington, VA: U.S. Dairy Export Council, 2006.U.S. Food and Drug Administration (USFDA). Animal Cloning: A Draft Risk Assessment. Rockville, MD: Center for Veterinary Medicine, U.S. Food and Drug Administration, 28 Dec. 2006.———. FDA and Nanotechnology Products. U.S. Department of Health and Human Services, U.S. Food and Drug Administration, 2008. 24 Apr. 2008 < http://www.fda.gov/nanotechnology/faqs.html >.Woodrow Wilson International Center for Scholars (WWICS). “A Nanotechnology Consumer Products Inventory.” Data set as at Sep. 2007. Woodrow Wilson International Center for Scholars, Project on Emerging Technologies, Sep. 2007. 24 Apr. 2008 < http://www.nanotechproject.org/inventories/consumer >.

Introduction The scientific validity of climate change claims, how to intervene (if at all) in environmental, economic, political and social consequences of climate change, and the adaptation and mitigation needed with any given climate change scenario, are contested areas of public, policy and academic discourses. For marginalised populations, the climate discourses around adaptation, mitigation, vulnerability and resilience are of particular importance. This paper considers the silence around disabled people in these discourses. Marci Roth of the Spinal Cord Injury Association testified before Congress in regards to the Katrina disaster: [On August 29] Susan Daniels called me to enlist my help because her sister in-law, a quadriplegic woman in New Orleans, had been unsuccessfully trying to evacuate to the Superdome for two days. […] It was clear that this woman, Benilda Caixetta, was not being evacuated. I stayed on the phone with Benilda, for the most part of the day. […] She kept telling me she’d been calling for a ride to the Superdome since Saturday; but, despite promises, no one came. The very same paratransit system that people can’t rely on in good weather is what was being relied on in the evacuation. […] I was on the phone with Benilda when she told me, with panic in her voice “the water is rushing in.” And then her phone went dead. We learned five days later that she had been found in her apartment dead, floating next to her wheelchair. […] Benilda did not have to drown. (National Council on Disability, emphasis added) According to the Intergovernmental Panel on Climate Change (IPCC), adaptation is the “Adjustment in natural or human systems in response to actual or expected climatic stimuli or their effects, which moderates harm or exploits beneficial opportunities” (IPCC, Climate Change 2007). Adaptations can be anticipatory or reactive, and depending on their degree of spontaneity they can be autonomous or planned (IPCC, Fourth Assessment Report). Adaptations can be private or public (IPCC, Fourth Assessment Report), technological, behavioural, managerial and structural (National Research Council of Canada). Adaptation, in the context of human dimensions of global change, usually refers to a process, action or outcome in a system (household, community, group, sector, region, country) in order for that system to better cope with, manage or adjust to some changing condition, stress, hazard, risk or opportunity (Smit and Wandel). Adaptation can encompass national or regional strategies as well as practical steps taken at the community level or by individuals. According to Smit et al, a framework for systematically defining adaptations is based on three questions: (i) adaptation to what; (ii) who or what adapts; and (iii) how does adaptation occur? These are essential questions that have to be looked at from many angles including cultural and anthropological lenses as well as lenses of marginalised and highly vulnerable populations. Mitigation (to reduce or prevent changes in the climate system), vulnerability (the degree to which a system is susceptible to, and unable to cope with, the adverse effects of climate change), and resilience (the amount of change a system can undergo without changing state), are other important concepts within the climate change discourse. Non-climate stresses can increase vulnerability to climate change by reducing resilience and can also reduce adaptive capacity because of resource deployment to competing needs. Extending this to the context of disabled people, ableism (sentiment to expect certain abilities within humans) (Wolbring, “Is there an end to out-able?”) and disablism (the unwillingness to accommodate different needs) (Miller, Parker and Gillinson) are two concepts that will thus play themselves out in climate discourses. The “Summary for Policymakers” of the IPCC 2007 report, Climate Change 2007: Impacts, Adaptation and Vulnerability, states: “Poor communities can be especially vulnerable, in particular those concentrated in high-risk areas. They tend to have more limited adaptive capacities, and are more dependent on climate-sensitive resources such as local water and food supplies.” From this quote one can conclude that disabled people are particularly impacted, as the majority of disabled people live in poverty (Elwan). For instance, CARE International, a humanitarian organisation fighting global poverty, the UN Office for the Coordination of Humanitarian Affairs, and Maplecroft, a company that specialises in the calculation, analysis and visualisation of global risks, conclude: “The degree of vulnerability is determined by underlying natural, human, social, physical and financial factors and is a major reason why poor people—especially those in marginalised social groups like women, children, the elderly and people with disabilities—are most affected by disasters” (CARE International). The purpose of this paper is to expose the reader to (a) how disabled people are situated in the culture of the climate, adaptation, mitigation and resilience discourse; (b) how one would answer the three questions, (i) adaptation to what, (ii) who or what adapts, and (iii) how does adaptation occur (Smit et al), using a disabled people lens; and (c) what that reality of the involvement of disabled people within the climate change discourse might herald for other groups in the future. The paper contends that there is a pressing need for the climate discourse to be more inclusive and to develop a new social contract to modify existing dynamics of ableism and disablism so as to avoid the uneven distribution of evident burdens already linked to climate change. A Culture of Neglect: The Situation of Disabled People As climates changes, environmental events that are classified as natural disasters are expected to be more frequent. In the face of recent disaster responses, how effective have these efforts been as they relate to the needs and challenges faced by disabled people? Almost immediately after Hurricane Katrina devastated the Gulf Coast, the National Council on Disability (NCD) in the United States estimated that 155,000 people with disabilities lived in the three cities hardest hit by the hurricane (about 25 per cent of the cities’ populations). The NCD urged emergency managers and government officials to recognise that the need for basic necessities by hurricane survivors with disabilities was “compounded by chronic health conditions and functional impairments … [which include] people who are blind, people who are deaf, people who use wheelchairs, canes, walkers, crutches, people with service animals, and people with mental health needs.” The NCD estimated that a disproportionate number of fatalities were people with disabilities. They cited one statistic from the American Association of Retired Persons (AARP): “73 per cent of Hurricane Katrina-related deaths in New Orleans area were among persons age 60 and over, although they comprised only 15 per cent of the population in New Orleans.” As the NCD stated, “most of those individuals had medical conditions and functional or sensory disabilities that made them more vulnerable. Many more people with disabilities under the age of 60 died or were otherwise impacted by the hurricanes.” As these numbers are very likely linked to the impaired status of the elderly, it seems reasonable to assume similar numbers for non-elderly disabled people. Hurricane Katrina is but one example of how disabled people are neglected in a disaster (Hemingway and Priestley; Fjord and Manderson). Disabled people were also disproportionately impacted in other disasters, such as the 1995 Great Hanshin Earthquake in Japan (Nakamura) or the 2003 heatwave in France, where 63 per cent of heat-related deaths occurred in institutions, with a quarter of these in nursing homes (Holstein et al.). A review of 18 US heatwave response plans revealed that although people with mental or chronic illnesses and the homeless constitute a significant proportion of the victims in recent heatwaves, only one plan emphasised outreach to disabled persons, and only two addressed the shelter and water needs of the homeless (Ebi and Meehl; Bernhard and McGeehin). Presence of Disabled People in Climate Discourse Although climate change will disproportionately impact disabled people, despite the less than stellar record of disaster adaptation and mitigation efforts towards disabled people, and despite the fact that other social groups (such as women, children, ‘the poor’, indigenous people, farmers and displaced people) are mentioned in climate-related reports such as the IPCC reports and the Human Development Report 2007/2008, the same reports do not mention disabled people. Even worse, the majority of the material generated by, and physically set up for, discourses on climate, is inaccessible for many disabled people (Australian Human Rights Commission). For instance, the IPCC report, Climate Change 2007: Impacts, Adaptation and Vulnerability, contains Box 8.2: Gender and natural disasters, makes the following points: (a) “men and women are affected differently in all phases of a disaster, from exposure to risk and risk perception; to preparedness behaviour, warning communication and response; physical, psychological, social and economic impacts; emergency response; and ultimately to recovery and reconstruction”; (b) “natural disasters have been shown to result in increased domestic violence against, and post-traumatic stress disorders in, women”; and (c) “women make an important contribution to disaster reduction, often informally through participating in disaster management and acting as agents of social change. Their resilience and their networks are critical in household and community recovery.” The content of Box 8.2 acknowledges the existence of different perspectives and contributions to the climate discourse, and that it is beneficial to explore these differences. It seems reasonable to assume that differences in perspectives, contributions and impact may well also exist between people with and without disabilities, and that it may be likewise beneficial to explore these differences. Disabled people are differently affected in all phases of a disaster, from exposure to risk and risk perception; to preparedness behaviour, warning communication and response; physical, psychological, social and economic impacts; emergency response; and ultimately to recovery and reconstruction. Disabled people could also make an important contribution to disaster reduction, often informally through participating in disaster management and acting as agents of social change. Their resilience and their networks are critical in household and community recovery, important as distributors of relief efforts and in reconstruction design. The Bonn Declaration from the 2007 international conference, Disasters are always Inclusive: Persons with Disabilities in Humanitarian Emergency Situations, highlighted many problems disabled people are facing and gives recommendations for inclusive disaster preparedness planning, for inclusive response in acute emergency situations and immediate rehabilitation measures, and for inclusive post-disaster reconstruction and development measures. Many workshops were initiated by disabled people groups, such as Rehabilitation International. However, the disabled people disaster adaptation and mitigation discourse is not mainstreamed. Advocacy by people with disability for accessible transport and universal or “life-cycle” housing (among other things) shows how they can contribute significantly to more effective social systems and public facilities. These benefit everyone and help to shift public expectations towards accessible and flexible amenities and services—for example, emergency response and evacuation procedures are much easier for all if such facilities are universally accessible. Most suggestions by disabled people for a more integrative, accessible physical environment and societal attitude benefit everyone, and gain special importance with the ever-increasing proportion of elderly people in society. The IPCC Fourth Assessment Report is intended to be a balanced assessment of current knowledge on climate change mitigation. However, none of the 2007 IPCC reports mention disabled people. Does that mean that disabled people are not impacted by, or impact, climate change? Does no knowledge of adaptation, mitigation and adaptation capacity from a disabled people lens exist, or does the knowledge not reach the IPCC, or does the IPCC judge this knowledge as irrelevant? This culture of neglect and unbalanced assessment of knowledge evident in the IPCC reports was recognised before for rise of a ‘global’ climate discourse. For instance, a 2001 Canadian government document asked that research agendas be developed with the involvement of, among others, disabled people (Health Canada). The 2009 Nairobi Declaration on Africa’s response to climate change (paragraph 36) also asks for the involvement of disabled people (African Ministerial Conference on the Environment). However, so far nothing has trickled up to the international bodies, like the IPCC, or leading conferences such as the United Nations Climate Change Conference Copenhagen 2009. Where Will It End? In his essay, “We do not need climate change apartheid in adaptation”, in the Human Development Report 2007/2008, Archbishop Desmond Tutu suggests that we are drifting into a situation of global adaptation apartheid—that adaptation becomes a euphemism for social injustice on a global scale (United Nations Development Programme). He uses the term “adaptation apartheid” to highlight the inequality of support for adaptation capacity between high and low income countries: “Inequality in capacity to adapt to climate change is emerging as a potential driver of wider disparities in wealth, security and opportunities for human development”. I submit that “adaptation apartheid” also exists in regard to disabled people, with the invisibility of disabled people in the climate discourse being just one facet. The unwillingness to accommodate, to help the “other,” is nothing new for disabled people. The ableism that favours species-typical bodily functioning (Wolbring, “Is there an end to out-able?”; Wolbring, “Why NBIC?”) and disablism (Miller, Parker, and Gillinson)—the lack of accommodation enthusiasm for the needs of people with ‘below’ species-typical body abilities and the unwillingness to adapt to the needs of “others”—is a form of “adaptation apartheid,” of accommodation apartheid, of adaptation disablism that has been battled by disabled people for a long time. In a 2009 online survey of 2000 British people, 38 per cent believed that most people in British society see disabled people as a “drain on resources” (Scope). A majority of human geneticist concluded in a survey in 1999 that disabled people will never be given the support they need (Nippert and Wolff). Adaptation disablism is visible in the literature and studies around other disasters. The 1988 British Medical Association discussion document, Selection of casualties for treatment after nuclear attack, stated “casualties whose injuries were likely to lead to a permanent disability would receive lower priority than those expected to fully recover” (Sunday Morning Herald). Famine is seen to lead to increased infanticide, increased competitiveness and decreased collaboration (Participants of the Nuclear Winter: The Anthropology of Human Survival Session). Ableism and disablism notions experienced by disabled people can now be extended to include those challenges expected to arise from the need to adapt to climate change. It is reasonable to expect that ableism will prevail, expecting people to cope with certain forms of climate change, and that disablism will be extended, with the ones less affected being unwilling to accommodate the ones more affected beyond a certain point. This ableism/disablism will not only play itself out between high and low income countries, as Desmond Tutu described, but also within high income countries, as not every need will be accommodated. The disaster experience of disabled people is just one example. And there might be climate change consequences that one can only mitigate through high tech bodily adaptations that will not be available to many of the ones who are so far accommodated in high income countries. Desmond Tutu submits that adaptation apartheid might work for the fortunate ones in the short term, but will be destructive for them in the long term (United Nations Development Programme). Disability studies scholar Erik Leipoldt proposed that the disability perspective of interdependence is a practical guide from the margins for making new choices that may lead to a just and sustainable world—a concept that reduces the distance between each other and our environment (Leipoldt). This perspective rejects ableism and disablism as it plays itself out today, including adaptation apartheid. Planned adaptation involves four basic steps: information development and awareness-raising; planning and design; implementation; and monitoring and evaluation (Smit et al). Disabled people have important knowledge to contribute to these four basic steps that goes far beyond their community. Their understanding and acceptance of, for example, the concept of interdependence, is just one major contribution. Including the concept of interdependence within the set of tools that inform the four basic steps of adaptation and other facets of climate discourse has the potential to lead to a decrease of adaptation apartheid, and to increase the utility of the climate discourse for the global community as a whole. References African Ministerial Conference on the Environment. 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Worldbank, Social Protection Discussion Paper Series (1999): 9932. 26 Aug. 2009 ‹ http://siteresources.worldbank.org/DISABILITY/Resources/Poverty/Poverty_and_Disability_A_Survey_of_the_Literature.pdf ›. Fjord, L., and L. Manderson. “Anthropological Perspectives on Disasters and Disability: An Introduction.” Human Organisation 68.1 (2009): 64-72. Health Canada. First Annual National Health and Climate Change Science and Policy Research Consensus Conference: How Will Climate Change Affect Priorities for Your Health Science and Policy Research? Health Canada, 2001. 26 Aug. 2009 ‹ http://www.hc-sc.gc.ca/ewh-semt/pubs/climat/research-agenda-recherche/population-eng.php ›. Hemingway, L., and M. Priestley. “Natural Hazards, Human Vulnerability and Disabling Societies: A Disaster for Disabled People?” The Review of Disability Studies (2006). 26 Aug. 2009 ‹ http://www.rds.hawaii.edu/counter/count.php?id=13 ›. Holstein, J., et al. “Were Less Disabled Patients the Most Affected by the 2003 Heatwave in Nursing Homes in Paris, France?” Journal of Public Health Advance 27.4 (2005): 359-65. Intergovernmental Panel on Climate Change. Climate Change 2007: Impacts, Adaptation and Vulnerability. 2007. 26 Aug. 2009 ‹ http://www.ipcc.ch/publications_and_data/publications_ipcc_fourth_assessment_report_wg2_report_impacts_adaptation_and_vulnerability.htm ›. Intergovernmental Panel on Climate Change. “Summary for Policymakers.” Eds. O. F. Canziani, J. P. Palutikof, P. J. van der Linden, C. E. Hanson, and M.L.Parry. Cambridge, UK: Cambridge University Press, 2007. 7-22. 26 Aug. 2009 ‹ http://www.ipcc.ch/pdf/assessment-report/ar4/wg2/ar4-wg2-spm.pdf ›. Intergovernmental Panel on Climate Change. 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Emergency Management and People with Disabilities: before, during and after Congressional Briefing, 10 November 2005. 26 Aug. 2009 ‹ http://www.ncd.gov/newsroom/publications/2005/transcript_emergencymgt.htm ›. National Council on Disability. National Council on Disability on Hurricane Katrina Affected Areas. 2005. 26 Aug. 2009 ‹ http://www.ncd.gov/newsroom/publications/2005/katrina2.htm ›. National Research Council of Canada. From Impacts to Adaptation: Canada in a Changing Climate 2007. 26 Aug. 2009 ‹ http://adaptation.nrcan.gc.ca/assess/2007/pdf/full-complet_e.pdf ›. Nippert, I. and G. Wolff. “Ethik und Genetik: Ergebnisse der Umfrage zu Problemaspekten angewandter Humangenetik 1994-1996, 37 Länder.” Medgen 11 (1999): 53-61. Participants of the Nuclear Winter: The Anthropology of Human Survival Session. Proceedings of the 84th American Anthropological Association's Annual Meeting. 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While the television cooking genre has evolved in numerous ways to withstand competition and become a constant feature in television programming (Collins and College), it has been argued that audience demand for televisual cooking has always been high because of the daily importance of cooking (Hamada, “Multimedia Integration”). Early cooking shows were characterised by an instructional discourse, before quickly embracing an entertainment focus; modern cooking shows take on a more competitive, out of the kitchen focus (Collins and College). The genre has continued to evolve, with celebrity chefs and ordinary people embracing transmedia affordances to return to the instructional focus of the early cooking shows. While the television cooking show is recognised for its broad cultural impacts related to gender (Ouellette and Hay), cultural capital (Ibrahim; Oren), television formatting (Oren), and even communication itself (Matwick and Matwick), its role in the widespread adoption of television captions is significantly underexplored. Even the fact that a cooking show was the first ever program captioned on American television is almost completely unremarked within cooking show histories and literature.A Brief History of Captioning WorldwideWhen captions were first introduced on US television in the early 1970s, programmers were guided by the general principle to make the captioned program “accessible to every deaf viewer regardless of reading ability” (Jensema, McCann and Ramsey 284). However, there were no exact rules regarding captioning quality and captions did not reflect verbatim what was said onscreen. According to Jensema, McCann and Ramsey (285), less than verbatim captioning continued for many years because “deaf people were so delighted to have captions that they accepted almost anything thrown on the screen” (see also Newell 266 for a discussion of the UK context).While the benefits of captions for people who are D/deaf or hard of hearing were immediate, its commercial applications also became apparent. When the moral argument that people who were D/deaf or hard of hearing had a right to access television via captions proved unsuccessful in the fight for legislation, advocates lobbied the US Congress about the mainstream commercial benefits such as in education and the benefits for people learning English as a second language (Downey). Activist efforts and hard-won legal battles meant D/deaf and hard of hearing viewers can now expect closed captions on almost all television content. With legislation in place to determine the provision of captions, attention began to focus on their quality. D/deaf viewers are no longer just delighted to accept anything thrown on the screen and have begun to demand verbatim captioning. At the same time, market-based incentives are capturing the attention of television executives seeking to make money, and the widespread availability of verbatim captions has been recognised for its multimedia—and therefore commercial—applications. These include its capacity for information retrieval (Miura et al.; Agnihotri et al.) and for creative repurposing of television content (Blankinship et al.). Captions and transcripts have been identified as being of particular importance to augmenting the information provided in cooking shows (Miura et al.; Oh et al.).Early Captions in the US: Julia Child’s The French ChefJulia Child is indicative of the early period of the cooking genre (Collins and College)—she has been described as “the epitome of the TV chef” (ray 53) and is often credited for making cooking accessible to American audiences through her onscreen focus on normalising techniques that she promised could be mastered at home (ray). She is still recognised for her mastery of the genre, and for her capacity to entertain in a way that stood out from her contemporaries (Collins and College; ray).Julia Child’s The French Chef originally aired on the US publicly-funded Public Broadcasting System (PBS) affiliate WBGH from 1963–1973. The captioning of television also began in the 1960s, with educators creating the captions themselves, mainly for educational use in deaf schools (Downey 70). However, there soon came calls for public television to also be made accessible for the deaf and hard of hearing—the debate focused on equality and pushed for recognition that deaf people were culturally diverse (Downey 70).The PBS therefore began a trial of captioning programs (Downey 71). These would be “open captions”—characters which were positioned on the screen as part of the normal image for all viewers to see (Downey 71). The trial was designed to determine both the number of D/deaf and hard of hearing people viewing the program, as well as to test if non-D/deaf and hard of hearing viewers would watch a program which had captions (Downey 71). The French Chef was selected for captioning by WBGH because it was their most popular television show in the early 1970s and in 1972 eight episodes of The French Chef were aired using open—albeit inconsistent—captions (Downey 71; Jensema et al. 284).There were concerns from some broadcasters that openly captioned programs would drive away the “hearing majority” (Downey 71). However, there was no explicit study carried out in 1972 on the viewers of The French Chef to determine if this was the case because WBGH ran out of funds to research this further (Downey 71). Nevertheless, Jensema, McCann and Ramsey (284) note that WBGH did begin to re-broadcast ABC World News Tonight in the 1970s with open captions and that this was the only regularly captioned show at the time.Due to changes in technology and fears that not everyone wanted to see captions onscreen, television’s focus shifted from open captions to closed captioning in the 1980s. Captions became encoded, with viewers needing a decoder to be able to access them. However, the high cost of the decoders meant that many could not afford to buy them and adoption of the technology was slow (Youngblood and Lysaght 243; Downey 71). In 1979, the US government had set up the National Captioning Institute (NCI) with a mandate to develop and sell these decoders, and provide captioning services to the networks. This was initially government-funded but was designed to eventually be self-sufficient (Downey 73).PBS, ABC and NBC (but not CBS) had agreed to a trial (Downey 73). However, there was a reluctance on the part of broadcasters to pay to caption content when there was not enough evidence that the demand was high (Downey 73—74). The argument for the provision of captioned content therefore began to focus on the rights of all citizens to be able to access a public service. A complaint was lodged claiming that the Los Angeles station KCET, which was a PBS affiliate, did not provide captioned content that was available elsewhere (Downey 74). When Los Angeles PBS station KCET refused to air captioned episodes of The French Chef, the Greater Los Angeles Council on Deafness (GLAD) picketed the station until the decision was reversed. GLAD then focused on legislation and used the Rehabilitation Act to argue that television was federally assisted and, by not providing captioned content, broadcasters were in violation of the Act (Downey 74).GLAD also used the 1934 Communications Act in their argument. This Act had firstly established the Federal Communications Commission (FCC) and then assigned them the right to grant and renew broadcast licenses as long as those broadcasters served the ‘‘public interest, convenience, and necessity’’ (Michalik, cited in Downey 74). The FCC could, argued GLAD, therefore refuse to renew the licenses of broadcasters who did not air captioned content. However, rather than this argument working in their favour, the FCC instead changed its own procedures to avoid such legal actions in the future (Downey 75). As a result, although some stations began to voluntarily caption more content, it was not until 1996 that it became a legally mandated requirement with the introduction of the Telecommunications Act (Youngblood and Lysaght 244)—too late for The French Chef.My Kitchen Rules: Captioning BreachWhereas The French Chef presented instructional cooking programming from a kitchen set, more recently the food genre has moved away from the staged domestic kitchen set as an instructional space to use real-life domestic kitchens and more competitive multi-bench spaces. The Australian program MKR straddles this shift in the cooking genre with the first half of each season occurring in domestic settings and the second half in Iron Chef style studio competition (see Oren for a discussion of the influence of Iron Chef on contemporary cooking shows).All broadcast channels in Australia are mandated to caption 100 per cent of programs aired between 6am and midnight. However, the 2013 MKR Grand Final broadcast by Channel Seven Brisbane Pty Ltd and Channel Seven Melbourne Pty Ltd (Seven) failed to transmit 10 minutes of captions some 30 minutes into the 2-hour program. The ACMA received two complaints relating to this. The first complaint, received on 27 April 2013, the same evening as the program was broadcast, noted ‘[the D/deaf community] … should not have to miss out’ (ACMA, Report No. 3046 3). The second complaint, received on 30 April 2013, identified the crucial nature of the missing segment and its effect on viewers’ overall enjoyment of the program (ACMA, Report No. 3046 3).Seven explained that the relevant segment (approximately 10 per cent of the program) was missing from the captioning file, but that it had not appeared to be missing when Seven completed its usual captioning checks prior to broadcast (ACMA, Report No. 3046 4). The ACMA found that Seven had breached the conditions of their commercial television broadcasting licence by “failing to provide a captioning service for the program” (ACMA, Report No. 3046 12). The interruption of captioning was serious enough to constitute a breach due, in part, to the nature and characteristic of the program:the viewer is engaged in the momentum of the competitive process by being provided with an understanding of each of the competition stages; how the judges, guests and contestants interact; and their commentaries of the food and the cooking processes during those stages. (ACMA, Report No. 3046 6)These interactions have become a crucial part of the cooking genre, a genre often described as offering a way to acquire cultural capital via instructions in both cooking and ideological food preferences (Oren 31). Further, in relation to the uncaptioned MKR segment, ACMA acknowledged it would have been difficult to follow both the cooking process and the exchanges taking place between contestants (ACMA, Report No. 3046 8). ACMA considered these exchanges crucial to ‘a viewer’s understanding of, and secondly to their engagement with the different inter-related stages of the program’ (ACMA, Report No. 3046 7).An additional complaint was made with regards to the same program broadcast on Prime Television (Northern) Pty Ltd (Prime), a Seven Network affiliate. The complaint stated that the lack of captions was “Not good enough in prime time and for a show that is non-live in nature” (ACMA, Report No. 3124 3). Despite the fact that the ACMA found that “the fault arose from the affiliate, Seven, rather than from the licensee [Prime]”, Prime was also found to also have breached their licence conditions by failing to provide a captioning service (ACMA, Report No. 3124 12).The following year, Seven launched captions for their online catch-up television platform. Although this was a result of discussions with a complainant over the broader lack of captioned online television content, it was also a step that re-established Seven’s credentials as a leader in commercial television access. The 2015 season of MKR also featured their first partially-deaf contestant, Emilie Biggar.Mainstreaming Captions — Inter-Platform CooperationOver time, cooking shows on television have evolved from an informative style (The French Chef) to become more entertaining in their approach (MKR). As Oren identifies, this has seen a shift in the food genre “away from the traditional, instructional format and towards professionalism and competition” (Oren 25). The affordances of television itself as a visual medium has also been recognised as crucial in the popularity of this genre and its more recent transmedia turn. That is, following Joshua Meyrowitz’s medium theory regarding how different media can afford us different messages, televised cooking shows offer audiences stylised knowledge about food and cooking beyond the traditional cookbook (Oren; ray). In addition, cooking shows are taking their product beyond just television and increasing their inter-platform cooperation (Oren)—for example, MKR has a comprehensive companion website that viewers can visit to watch whole episodes, obtain full recipes, and view shopping lists. While this can be viewed as a modern take on Julia Child’s cookbook success, it must also be considered in the context of the increasing focus on multimedia approaches to cooking instructions (Hamada et al., Multimedia Integration; Cooking Navi; Oh et al.). Audiences today are more likely to attempt a recipe if they have seen it on television, and will use transmedia to download the recipe. As Oren explains:foodism’s ascent to popular culture provides the backdrop and motivation for the current explosion of food-themed formats that encourages audiences’ investment in their own expertise as critics, diners, foodies and even wanna-be professional chefs. FoodTV, in turn, feeds back into a web-powered, gastro-culture and critique-economy where appraisal outranks delight. (Oren 33)This explosion in popularity of the web-powered gastro culture Oren refers to has led to an increase in appetite for step by step, easy to access instructions. These are being delivered using captions. As a result of the legislation and activism described throughout this paper, captions are more widely available and, in many cases, now describe what is said onscreen verbatim. In addition, the mainstream commercial benefits and uses of captions are being explored. Captions have therefore moved from a specialist assistive technology for people who are D/deaf or hard of hearing to become recognised as an important resource for creative television viewers regardless of their hearing (Blankinship et al.). With captions becoming more accessible, accurate, financially viable, and mainstreamed, their potential as an additional television resource is of interest. As outlined above, within the cooking show genre—especially with its current multimedia turn and the demand for captioned recipe instructions (Hamada et al., “Multimedia Integration”, “Cooking Navi”; Oh et al.)—this is particularly pertinent.Hamada et al. identify captions as a useful technology to use in the increasingly popular educational, yet entertaining, cooking show genre as the required information—ingredient lists, instructions, recipes—is in high demand (Hamada et al., “Multimedia Integration” 658). They note that cooking shows often present information out of order, making them difficult to follow, particularly if a recipe must be sourced later from a website (Hamada et al., “Multimedia Integration” 658-59; Oh et al.). Each step in a recipe must be navigated and coordinated, particularly if multiple recipes are being completed at the same times (Hamada, et al., Cooking Navi) as is often the case on cooking shows such as MKR. Using captions as part of a software program to index cooking videos facilitates a number of search affordances for people wishing to replicate the recipe themselves. As Kyeong-Jin et al. explain:if food and recipe information are published as linked data with the scheme, it enables to search food recipe and annotate certain recipe by communities (sic). In addition, because of characteristics of linked data, information on food recipes can be connected to additional data source such as products for ingredients, and recipe websites can support users’ decision making in the cooking domain. (Oh et al. 2)The advantages of such a software program are many. For the audience there is easy access to desired information. For the number of commercial entities involved, this consumer desire facilitates endless marketing opportunities including product placement, increased ratings, and software development. Interesting, all of this falls outside the “usual” parameters of captions as purely an assistive device for a few, and facilitates the mainstreaming—and perhaps beginnings of acceptance—of captions.ConclusionCaptions are a vital accessibility feature for television viewers who are D/deaf or hard of hearing, not just from an informative or entertainment perspective but also to facilitate social inclusion for this culturally diverse group. The availability and quality of television captions has moved through three stages. These can be broadly summarised as early yet inconsistent captions, captions becoming more widely available and accurate—often as a direct result of activism and legislation—but not yet fully verbatim, and verbatim captions as adopted within mainstream software applications. This paper has situated these stages within the television cooking genre, a genre often remarked for its appeal towards inclusion and cultural capital.If television facilitates social inclusion, then food television offers vital cultural capital. While Julia Child’s The French Chef offered the first example of television captions via open captions in 1972, a lack of funding means we do not know how viewers (both hearing and not) actually received the program. However, at the time, captions that would be considered unacceptable today were received favourably (Jensema, McCann and Ramsey; Newell)—anything was deemed better than nothing. Increasingly, as the focus shifted to closed captioning and the cooking genre embraced a more competitive approach, viewers who required captions were no longer happy with missing or inconsistent captioning quality. The was particularly significant in Australia in 2013 when several viewers complained to ACMA that captions were missing from the finale of MKR. These captions provided more than vital cooking instructions—their lack prevented viewers from understanding conflict within the program. Following this breach, Seven became the only Australian commercial television station to offer captions on their web based catch-up platform. While this may have gone a long way to rehabilitate Seven amongst D/deaf and hard of hearing audiences, there is the potential too for commercial benefits. Caption technology is now being mainstreamed for use in cooking software applications developed from televised cooking shows. These allow viewers—both D/deaf and hearing—to access information in a completely new, and inclusive, way.ReferencesAgnihotri, Lalitha, et al. “Summarization of Video Programs Based on Closed Captions.” 4315 (2001): 599–607.Australian Communications and Media Authority (ACMA). Investigation Report No. 3046. 2013. 26 Apr. 2017 <http://www.acma.gov.au/~/media/Diversity%20Localism%20and%20Accessibility/Investigation%20reports/Word%20document/3046%20My%20Kitchen%20Rules%20Grand%20Final%20docx.docx>.———. Investigation Report No. 3124. 2014. 26 Apr. 2017 <http://www.acma.gov.au/~/media/Diversity%20Localism%20and%20Accessibility/Investigation%20reports/Word%20document/3124%20NEN%20My%20Kitchen%20Rules%20docx.docx>.Blankinship, E., et al. “Closed Caption, Open Source.” BT Technology Journal 22.4 (2004): 151–59.Collins, Kathleen, and John Jay College. “TV Cooking Shows: The Evolution of a Genre”. Flow: A Critical Forum on Television and Media Culture (7 May 2008). 14 May 2017 <http://www.flowjournal.org/2008/05/tv-cooking-shows-the-evolution-of-a-genre/>.Downey, Greg. “Constructing Closed-Captioning in the Public Interest: From Minority Media Accessibility to Mainstream Educational Technology.” The Journal of Policy, Regulation and Strategy for Telecommunications, Information and Media 9.2/3 (2007): 69–82. 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When we think of disability today in the Western world, Christopher Reeve most likely comes to mind. A film star who captured people’s imagination as Superman, Reeve was already a celebrity before he took the fall that would lead to his new position in the fame game: the role of super-crip. As a person with acquired quadriplegia, Christopher Reeve has become both the epitome of disability in Western culture — the powerful cultural myth of disability as tragedy and catastrophe — and, in an intimately related way, the icon for the high-technology quest for cure. The case of Reeve is fascinating, yet critical discussion of Christopher Reeve in terms of fame, celebrity and his performance of disability is conspicuously lacking (for a rare exception see McRuer). To some extent this reflects the comparative lack of engagement of media and cultural studies with disability (Goggin). To redress this lacuna, we draw upon theories of celebrity (Dyer; Marshall; Turner, Bonner, & Marshall; Turner) to explore the production of Reeve as celebrity, as well as bringing accounts of celebrity into dialogue with critical disability studies. Reeve is a cultural icon, not just because of the economy, industrial processes, semiotics, and contemporary consumption of celebrity, outlined in Turner’s 2004 framework. Fame and celebrity are crucial systems in the construction of disability; and the circulation of Reeve-as-celebrity only makes sense if we understand the centrality of disability to culture and media. Reeve plays an enormously important (if ambiguous) function in the social relations of disability, at the heart of the discursive underpinning of the otherness of disability and the construction of normal sexed and gendered bodies (the normate) in everyday life. What is distinctive and especially powerful about this instance of fame and disability is how authenticity plays through the body of the celebrity Reeve; how his saintly numinosity is received by fans and admirers with passion, pathos, pleasure; and how this process places people with disabilities in an oppressive social system, so making them subject(s). An Accidental Star Born September 25, 1952, Christopher Reeve became famous for his roles in the 1978 movie Superman, and the subsequent three sequels (Superman II, III, IV), as well as his role in other films such as Monsignor. As well as becoming a well-known actor, Reeve gained a profile for his activism on human rights, solidarity, environmental, and other issues. In May 1995 Reeve acquired a disability in a riding accident. In the ensuing months, Reeve’s situation attracted a great deal of international attention. He spent six months in the Kessler Rehabilitation Institute in New Jersey, and there gave a high-rating interview on US television personality Barbara Walters’ 20/20 program. In 1996, Reeve appeared at the Academy Awards, was a host at the 1996 Paralympic Games, and was invited to speak at the Democratic National Convention. In the same year Reeve narrated a film about the lives of people living with disabilities (Mierendorf). In 1998 his memoir Still Me was published, followed in 2002 by another book Nothing Is Impossible. Reeve’s active fashioning of an image and ‘new life’ (to use his phrase) stands in stark contrast with most people with disabilities, who find it difficult to enter into the industry and system of celebrity, because they are most often taken to be the opposite of glamorous or important. They are objects of pity, or freaks to be stared at (Mitchell & Synder; Thomson), rather than assuming other attributes of stars. Reeve became famous for his disability, indeed very early on he was acclaimed as the pre-eminent American with disability — as in the phrase ‘President of Disability’, an appellation he attracted. Reeve was quickly positioned in the celebrity industry, not least because his example, image, and texts were avidly consumed by viewers and readers. For millions of people — as evident in the letters compiled in the 1999 book Care Packages by his wife, Dana Reeve — Christopher Reeve is a hero, renowned for his courage in doing battle with his disability and his quest for a cure. Part of the creation of Reeve as celebrity has been a conscious fashioning of his life as an instructive fable. A number of biographies have now been published (Havill; Hughes; Oleksy; Wren). Variations on a theme, these tend to the hagiographic: Christopher Reeve: Triumph over Tragedy (Alter). Those interested in Reeve’s life and work can turn also to fan websites. Most tellingly perhaps is the number of books, fables really, aimed at children, again, on a characteristic theme: Learning about Courage from the Life of Christopher Reeve (Kosek; see also Abraham; Howard). The construction, but especially the consumption, of Reeve as disabled celebrity, is consonant with powerful cultural myths and tropes of disability. In many Western cultures, disability is predominantly understood a tragedy, something that comes from the defects and lack of our bodies, whether through accidents of birth or life. Those ‘suffering’ with disability, according to this cultural myth, need to come to terms with this bitter tragedy, and show courage in heroically overcoming their lot while they bide their time for the cure that will come. The protagonist for this this script is typically the ‘brave’ person with disability; or, as this figure is colloquially known in critical disability studies and the disability movement — the super-crip. This discourse of disability exerts a strong force today, and is known as the ‘medical’ model. It interacts with a prior, but still active charity discourse of disability (Fulcher). There is a deep cultural history of disability being seen as something that needs to be dealt with by charity. In late modernity, charity is very big business indeed, and celebrities play an important role in representing the good works bestowed on people with disabilities by rich donors. Those managing celebrities often suggest that the star finds a charity to gain favourable publicity, a routine for which people with disabilities are generally the pathetic but handy extras. Charity dinners and events do not just reinforce the tragedy of disability, but they also leave unexamined the structural nature of disability, and its associated disadvantage. Those critiquing the medical and charitable discourses of disability, and the oppressive power relations of disability that it represents, point to the social and cultural shaping of disability, most famously in the British ‘social’ model of disability — but also from a range of other perspectives (Corker and Thomas). Those formulating these critiques point to the crucial function that the trope of the super-crip plays in the policing of people with disabilities in contemporary culture and society. Indeed how the figure of the super-crip is also very much bound up with the construction of the ‘normal’ body, a general economy of representation that affects everyone. Superman Flies Again The celebrity of Christopher Reeve and what it reveals for an understanding of fame and disability can be seen with great clarity in his 2002 visit to Australia. In 2002 there had been a heated national debate on the ethics of use of embryonic stem cells for research. In an analysis of three months of the print media coverage of these debates, we have suggested that disability was repeatedly, almost obsessively, invoked in these debates (‘Uniting the Nation’). Yet the dominant representation of disability here was the cultural myth of disability as tragedy, requiring cure at all cost, and that this trope was central to the way that biotechnology was constructed as requiring an urgent, united national response. Significantly, in these debates, people with disabilities were often talked about but very rarely licensed to speak. Only one person with disability was, and remains, a central figure in these Australian stem cell and biotechnology policy conversations: Christopher Reeve. As an outspoken advocate of research on embryonic stem-cells in the quest for a cure for spinal injuries, as well as other diseases, Reeve’s support was enlisted by various protagonists. The current affairs show Sixty Minutes (modelled after its American counterpart) presented Reeve in debate with Australian critics: PRESENTER: Stem cell research is leading to perhaps the greatest medical breakthroughs of all time… Imagine a world where paraplegics could walk or the blind could see … But it’s a breakthrough some passionately oppose. A breakthrough that’s caused a fierce personal debate between those like actor Christopher Reeve, who sees this technology as a miracle, and those who regard it as murder. (‘Miracle or Murder?’) Sixty Minutes starkly portrays the debate in Manichean terms: lunatics standing in the way of technological progress versus Christopher Reeve flying again tomorrow. Christopher presents the debate in utilitarian terms: CHRISTOPHER REEVE: The purpose of government, really in a free society, is to do the greatest good for the greatest number of people. And that question should always be in the forefront of legislators’ minds. (‘Miracle or Murder?’) No criticism of Reeve’s position was offered, despite the fierce debate over the implications of such utilitarian rhetoric for minorities such as people with disabilities (including himself!). Yet this utilitarian stance on disability has been elaborated by philosopher Peter Singer, and trenchantly critiqued by the international disability rights movement. Later in 2002, the Premier of New South Wales, Bob Carr, invited Reeve to visit Australia to participate in the New South Wales Spinal Cord Forum. A journalist by training, and skilled media practitioner, Carr had been the most outspoken Australian state premier urging the Federal government to permit the use of embryonic stem cells for research. Carr’s reasons were as much as industrial as benevolent, boosting the stocks of biotechnology as a clean, green, boom industry. Carr cleverly and repeated enlisted stereotypes of disability in the service of his cause. Christopher Reeve was flown into Australia on a specially modified Boeing 747, free of charge courtesy of an Australian airline, and was paid a hefty appearance fee. Not only did Reeve’s fee hugely contrast with meagre disability support pensions many Australians with disabilities live on, he was literally the only voice and image of disability given any publicity. Consuming Celebrity, Contesting Crips As our analysis of Reeve’s antipodean career suggests, if disability were a republic, and Reeve its leader, its polity would look more plutocracy than democracy; as befits modern celebrity with its constitutive tensions between the demotic and democratic (Turner). For his part, Reeve has criticised the treatment of people with disabilities, and how they are stereotyped, not least the narrow concept of the ‘normal’ in mainstream films. This is something that has directly effected his career, which has become limited to narration or certain types of television and film work. Reeve’s reprise on his culture’s notion of disability comes with his starring role in an ironic, high-tech 1998 remake of Alfred Hitchcock’s Rear Window (Bleckner), a movie that in the original featured a photojournalist injured and temporarily using a wheelchair. Reeve has also been a strong advocate, lobbyist, and force in the politics of disability. His activism, however, has been far more strongly focussed on finding a cure for people with spinal injuries — rather than seeking to redress inequality and discrimination of all people with disabilities. Yet Reeve’s success in the notoriously fickle star system that allows disability to be understood and mapped in popular culture is mostly an unexplored paradox. As we note above, the construction of Reeve as celebrity, celebrating his individual resilience and resourcefulness, and his authenticity, functions precisely to sustain the ‘truth’ and the power relations of disability. Reeve’s celebrity plays an ideological role, knitting together a set of discourses: individualism; consumerism; democratic capitalism; and the primacy of the able body (Marshall; Turner). The nature of this cultural function of Reeve’s celebrity is revealed in the largely unpublicised contests over his fame. At the same time Reeve was gaining fame with his traditional approach to disability and reinforcement of the continuing catastrophe of his life, he was attracting an infamy within certain sections of the international disability rights movement. In a 1996 US debate disability scholar David T Mitchell put it this way: ‘He’s [Reeve] the good guy — the supercrip, the Superman, and those of us who can live with who we are with our disabilities, but who cannot live with, and in fact, protest and retaliate against the oppression we confront every second of our lives are the bad guys’ (Mitchell, quoted in Brown). Many feel, like Mitchell, that Reeve’s focus on a cure ignores the unmet needs of people with disabilities for daily access to support services and for the ending of their brutal, dehumanising, daily experience as other (Goggin & Newell, Disability in Australia). In her book Make Them Go Away Mary Johnson points to the conservative forces that Christopher Reeve is associated with and the way in which these forces have been working to oppose the acceptance of disability rights. Johnson documents the way in which fame can work in a variety of ways to claw back the rights of Americans with disabilities granted in the Americans with Disabilities Act, documenting the association of Reeve and, in a different fashion, Clint Eastwood as stars who have actively worked to limit the applicability of civil rights legislation to people with disabilities. Like other successful celebrities, Reeve has been assiduous in managing his image, through the use of celebrity professionals including public relations professionals. In his Australian encounters, for example, Reeve gave a variety of media interviews to Australian journalists and yet the editor of the Australian disability rights magazine Link was unable to obtain an interview. Despite this, critiques of the super-crip celebrity function of Reeve by people with disabilities did circulate at the margins of mainstream media during his Australian visit, not least in disability media and the Internet (Leipoldt, Newell, and Corcoran, 2003). Infamous Disability Like the lives of saints, it is deeply offensive to many to criticise Christopher Reeve. So deeply engrained are the cultural myths of the catastrophe of disability and the creation of Reeve as icon that any critique runs the risk of being received as sacrilege, as one rare iconoclastic website provocatively prefigures (Maddox). In this highly charged context, we wish to acknowledge his contribution in highlighting some aspects of contemporary disability, and emphasise our desire not to play Reeve the person — rather to explore the cultural and media dimensions of fame and disability. In Christopher Reeve we find a remarkable exception as someone with disability who is celebrated in our culture. We welcome a wider debate over what is at stake in this celebrity and how Reeve’s renown differs from other disabled stars, as, for example, in Robert McRuer reflection that: ... at the beginning of the last century the most famous person with disabilities in the world, despite her participation in an ‘overcoming’ narrative, was a socialist who understood that disability disproportionately impacted workers and the power[less]; Helen Keller knew that blindness and deafness, for instance, often resulted from industrial accidents. At the beginning of this century, the most famous person with disabilities in the world is allowing his image to be used in commercials … (McRuer 230) For our part, we think Reeve’s celebrity plays an important contemporary role because it binds together a constellation of economic, political, and social institutions and discourses — namely science, biotechnology, and national competitiveness. In the second half of 2004, the stem cell debate is once again prominent in American debates as a presidential election issue. Reeve figures disability in national culture in his own country and internationally, as the case of the currency of his celebrity in Australia demonstrates. In this light, we have only just begun to register, let alone explore and debate, what is entailed for us all in the production of this disabled fame and infamy. Epilogue to “Fame and Disability” Christopher Reeve died on Sunday 10 October 2004, shortly after this article was accepted for publication. His death occasioned an outpouring of condolences, mourning, and reflection. We share that sense of loss. How Reeve will be remembered is still unfolding. The early weeks of public mourning have emphasised his celebrity as the very embodiment and exemplar of disabled identity: ‘The death of Christopher Reeve leaves embryonic-stem-cell activism without one of its star generals’ (Newsweek); ‘He Never Gave Up: What actor and activist Christopher Reeve taught scientists about the treatment of spinal-cord injury’ (Time); ‘Incredible Journey: Facing tragedy, Christopher Reeve inspired the world with hope and a lesson in courage’ (People); ‘Superman’s Legacy’ (The Express); ‘Reeve, the Real Superman’ (Hindustani Times). In his tribute New South Wales Premier Bob Carr called Reeve the ‘most impressive person I have ever met’, and lamented ‘Humankind has lost an advocate and friend’ (Carr). The figure of Reeve remains central to how disability is represented. In our culture, death is often closely entwined with disability (as in the saying ‘better dead than disabled’), something Reeve reflected upon himself often. How Reeve’s ‘global mourning’ partakes and shapes in this dense knots of associations, and how it transforms his celebrity, is something that requires further work (Ang et. al.). The political and analytical engagement with Reeve’s celebrity and mourning at this time serves to underscore our exploration of fame and disability in this article. Already there is his posthumous enlistment in the United States Presidential elections, where disability is both central and yet marginal, people with disability talked about rather than listened to. The ethics of stem cell research was an election issue before Reeve’s untimely passing, with Democratic presidential contender John Kerry sharply marking his difference on this issue with President Bush. After Reeve’s death his widow Dana joined the podium on the Kerry campaign in Columbus, Ohio, to put the case herself; for his part, Kerry compared Bush’s opposition to stem cell research as akin to favouring the candle lobby over electricity. As we write, the US polls are a week away, but the cultural representation of disability — and the intensely political role celebrity plays in it — appears even more palpably implicated in the government of society itself. References Abraham, Philip. Christopher Reeve. New York: Children’s Press, 2002. Alter, Judy. Christopher Reeve: Triumph over Tragedy. Danbury, Conn.: Franklin Watts, 2000. Ang, Ien, Ruth Barcan, Helen Grace, Elaine Lally, Justine Lloyd, and Zoe Sofoulis (eds.) Planet Diana: Cultural Studies and Global Mourning. Sydney: Research Centre in Intercommunal Studies, University of Western Sydney, Nepean, 1997. Bleckner, Jeff, dir. Rear Window. 1998. Brown, Steven E. “Super Duper? The (Unfortunate) Ascendancy of Christopher Reeve.” Mainstream: Magazine of the Able-Disabled, October 1996. Repr. 10 Aug. 2004 http://www.independentliving.org/docs3/brown96c.html>. Carr, Bob. “A Class Act of Grace and Courage.” Sydney Morning Herald. 12 Oct. 2004: 14. Corker, Mairian and Carol Thomas. “A Journey around the Social Model.” Disability/Postmodernity: Embodying Disability Theory. Ed. Mairian Corker and Tom Shakespeare. London and New York: Continuum, 2000. Donner, Richard, dir. Superman. 1978. Dyer, Richard. Heavenly Bodies: Film Stars and Society. London: BFI Macmillan, 1986. Fulcher, Gillian. Disabling Policies? London: Falmer Press, 1989. Furie, Sidney J., dir. Superman IV: The Quest for Peace. 1987. Finn, Margaret L. Christopher Reeve. Philadelphia: Chelsea House Publishers, 1997. Gilmer, Tim. “The Missionary Reeve.” New Mobility. November 2002. 13 Aug. 2004 http://www.newmobility.com/>. Goggin, Gerard. “Media Studies’ Disability.” Media International Australia 108 (Aug. 2003): 157-68. Goggin, Gerard, and Christopher Newell. Disability in Australia: Exposing a Social Apartheid. Sydney: UNSW Press, 2005. —. “Uniting the Nation?: Disability, Stem Cells, and the Australian Media.” Disability & Society 19 (2004): 47-60. Havill, Adrian. Man of Steel: The Career and Courage of Christopher Reeve. New York, N.Y.: Signet, 1996. Howard, Megan. Christopher Reeve. Minneapolis: Lerner Publications, 1999. Hughes, Libby. Christopher Reeve. Parsippany, NJ.: Dillon Press, 1998. Johnson, Mary. Make Them Go Away: Clint Eastwood, Christopher Reeve and the Case Against Disability Rights. Louisville : Advocado Press, 2003. Kosek, Jane Kelly. Learning about Courage from the Life of Christopher Reeve. 1st ed. New York : PowerKids Press, 1999. Leipoldt, Erik, Christopher Newell, and Maurice Corcoran. “Christopher Reeve and Bob Carr Dehumanise Disability — Stem Cell Research Not the Best Solution.” Online Opinion 27 Jan. 2003. http://www.onlineopinion.com.au/view.asp?article=510>. Lester, Richard (dir.) Superman II. 1980. —. Superman III. 1983. Maddox. “Christopher Reeve Is an Asshole.” 12 Aug. 2004 http://maddox.xmission.com/c.cgi?u=creeve>. Marshall, P. David. Celebrity and Power: Fame in Contemporary Culture. Minneapolis and London: U of Minnesota P, 1997. Mierendorf, Michael, dir. Without Pity: A Film about Abilities. Narr. Christopher Reeve. 1996. “Miracle or Murder?” Sixty Minutes. Channel 9, Australia. March 17, 2002. 15 June 2002 http://news.ninemsn.com.au/sixtyminutes/stories/2002_03_17/story_532.asp>. Mitchell, David, and Synder, Sharon, eds. The Body and Physical Difference. Ann Arbor, U of Michigan, 1997. McRuer, Robert. “Critical Investments: AIDS, Christopher Reeve, and Queer/Disability Studies.” Journal of Medical Humanities 23 (2002): 221-37. Oleksy, Walter G. Christopher Reeve. San Diego, CA: Lucent, 2000. Reeve, Christopher. Nothing Is Impossible: Reflections on a New Life. 1st ed. New York: Random House, 2002. —. Still Me. 1st ed. New York: Random House, 1998. Reeve, Dana, comp. Care Packages: Letters to Christopher Reeve from Strangers and Other Friends. 1st ed. New York: Random House, 1999. Reeve, Matthew (dir.) Christopher Reeve: Courageous Steps. Television documentary, 2002. Thomson, Rosemary Garland, ed. Freakery: Cultural Spectacles of the Extraordinary Body. New York: New York UP, 1996. Turner, Graeme. Understanding Celebrity. Thousands Oak, CA: Sage, 2004. Turner, Graeme, Frances Bonner, and David P Marshall. Fame Games: The Production of Celebrity in Australia. Melbourne: Cambridge UP, 2000. Wren, Laura Lee. Christopher Reeve: Hollywood’s Man of Courage. Berkeley Heights, NJ : Enslow, 1999. Younis, Steve. “Christopher Reeve Homepage.” 12 Aug. 2004 http://www.fortunecity.com/lavender/greatsleep/1023/main.html>. Citation reference for this article MLA Style Goggin, Gerard & Newell, Christopher. "Fame and Disability: Christopher Reeve, Super Crips, and Infamous Celebrity." M/C Journal 7.5 (2004). echo date('d M. Y'); ?> <http://journal.media-culture.org.au/0411/02-goggin.php>. APA Style Goggin, G. & Newell, C. (Nov. 2004) "Fame and Disability: Christopher Reeve, Super Crips, and Infamous Celebrity," M/C Journal, 7(5). Retrieved echo date('d M. Y'); ?> from <http://journal.media-culture.org.au/0411/02-goggin.php>.

Introduction Crime fiction is one of the world’s most popular genres. Indeed, it has been estimated that as many as one in every three new novels, published in English, is classified within the crime fiction category (Knight xi). These new entrants to the market are forced to jostle for space on bookstore and library shelves with reprints of classic crime novels; such works placed in, often fierce, competition against their contemporaries as well as many of their predecessors. Raymond Chandler, in his well-known essay The Simple Art of Murder, noted Ernest Hemingway’s observation that “the good writer competes only with the dead. The good detective story writer […] competes not only with all the unburied dead but with all the hosts of the living as well” (3). In fact, there are so many examples of crime fiction works that, as early as the 1920s, one of the original ‘Queens of Crime’, Dorothy L. Sayers, complained: It is impossible to keep track of all the detective-stories produced to-day [sic]. Book upon book, magazine upon magazine pour out from the Press, crammed with murders, thefts, arsons, frauds, conspiracies, problems, puzzles, mysteries, thrills, maniacs, crooks, poisoners, forgers, garrotters, police, spies, secret-service men, detectives, until it seems that half the world must be engaged in setting riddles for the other half to solve (95). Twenty years after Sayers wrote on the matter of the vast quantities of crime fiction available, W.H. Auden wrote one of the more famous essays on the genre: The Guilty Vicarage: Notes on the Detective Story, by an Addict. Auden is, perhaps, better known as a poet but his connection to the crime fiction genre is undisputed. As well as his poetic works that reference crime fiction and commentaries on crime fiction, one of Auden’s fellow poets, Cecil Day-Lewis, wrote a series of crime fiction novels under the pseudonym Nicholas Blake: the central protagonist of these novels, Nigel Strangeways, was modelled upon Auden (Scaggs 27). Interestingly, some writers whose names are now synonymous with the genre, such as Edgar Allan Poe and Raymond Chandler, established the link between poetry and crime fiction many years before the publication of The Guilty Vicarage. Edmund Wilson suggested that “reading detective stories is simply a kind of vice that, for silliness and minor harmfulness, ranks somewhere between crossword puzzles and smoking” (395). In the first line of The Guilty Vicarage, Auden supports Wilson’s claim and confesses that: “For me, as for many others, the reading of detective stories is an addiction like tobacco or alcohol” (406). This indicates that the genre is at best a trivial pursuit, at worst a pursuit that is bad for your health and is, increasingly, socially unacceptable, while Auden’s ideas around taste—high and low—are made clear when he declares that “detective stories have nothing to do with works of art” (406). The debates that surround genre and taste are many and varied. The mid-1920s was a point in time which had witnessed crime fiction writers produce some of the finest examples of fiction to ever be published and when readers and publishers were watching, with anticipation, as a new generation of crime fiction writers were readying themselves to enter what would become known as the genre’s Golden Age. At this time, R. Austin Freeman wrote that: By the critic and the professedly literary person the detective story is apt to be dismissed contemptuously as outside the pale of literature, to be conceived of as a type of work produced by half-educated and wholly incompetent writers for consumption by office boys, factory girls, and other persons devoid of culture and literary taste (7). This article responds to Auden’s essay and explores how crime fiction appeals to many different tastes: tastes that are acquired, change over time, are embraced, or kept as guilty secrets. In addition, this article will challenge Auden’s very narrow definition of crime fiction and suggest how Auden’s religious imagery, deployed to explain why many people choose to read crime fiction, can be incorporated into a broader popular discourse on punishment. This latter argument demonstrates that a taste for crime fiction and a taste for justice are inextricably intertwined. Crime Fiction: A Type For Every Taste Cathy Cole has observed that “crime novels are housed in their own section in many bookshops, separated from literary novels much as you’d keep a child with measles away from the rest of the class” (116). Times have changed. So too, have our tastes. Crime fiction, once sequestered in corners, now demands vast tracts of prime real estate in bookstores allowing readers to “make their way to the appropriate shelves, and begin to browse […] sorting through a wide variety of very different types of novels” (Malmgren 115). This is a result of the sheer size of the genre, noted above, as well as the genre’s expanding scope. Indeed, those who worked to re-invent crime fiction in the 1800s could not have envisaged the “taxonomic exuberance” (Derrida 206) of the writers who have defined crime fiction sub-genres, as well as how readers would respond by not only wanting to read crime fiction but also wanting to read many different types of crime fiction tailored to their particular tastes. To understand the demand for this diversity, it is important to reflect upon some of the appeal factors of crime fiction for readers. Many rules have been promulgated for the writers of crime fiction to follow. Ronald Knox produced a set of 10 rules in 1928. These included Rule 3 “Not more than one secret room or passage is allowable”, and Rule 10 “Twin brothers, and doubles generally, must not appear unless we have been duly prepared for them” (194–6). In the same year, S.S. Van Dine produced another list of 20 rules, which included Rule 3 “There must be no love interest: The business in hand is to bring a criminal to the bar of justice, not to bring a lovelorn couple to the hymeneal altar”, and Rule 7 “There simply must be a corpse in a detective novel, and the deader the corpse the better” (189–93). Some of these directives have been deliberately ignored or have become out-of-date over time while others continue to be followed in contemporary crime writing practice. In sharp contrast, there are no rules for reading this genre. Individuals are, generally, free to choose what, where, when, why, and how they read crime fiction. There are, however, different appeal factors for readers. The most common of these appeal factors, often described as doorways, are story, setting, character, and language. As the following passage explains: The story doorway beckons those who enjoy reading to find out what happens next. The setting doorway opens widest for readers who enjoy being immersed in an evocation of place or time. The doorway of character is for readers who enjoy looking at the world through others’ eyes. Readers who most appreciate skilful writing enter through the doorway of language (Wyatt online). These doorways draw readers to the crime fiction genre. There are stories that allow us to easily predict what will come next or make us hold our breath until the very last page, the books that we will cheerfully lend to a family member or a friend and those that we keep close to hand to re-read again and again. There are settings as diverse as country manors, exotic locations, and familiar city streets, places we have been and others that we might want to explore. There are characters such as the accidental sleuth, the hardboiled detective, and the refined police officer, amongst many others, the men and women—complete with idiosyncrasies and flaws—who we have grown to admire and trust. There is also the language that all writers, regardless of genre, depend upon to tell their tales. In crime fiction, even the most basic task of describing where the murder victim was found can range from words that convey the genteel—“The room of the tragedy” (Christie 62)—to the absurd: “There it was, jammed between a pallet load of best export boneless beef and half a tonne of spring lamb” (Maloney 1). These appeal factors indicate why readers might choose crime fiction over another genre, or choose one type of crime fiction over another. Yet such factors fail to explain what crime fiction is or adequately answer why the genre is devoured in such vast quantities. Firstly, crime fiction stories are those in which there is the committing of a crime, or at least the suspicion of a crime (Cole), and the story that unfolds revolves around the efforts of an amateur or professional detective to solve that crime (Scaggs). Secondly, crime fiction offers the reassurance of resolution, a guarantee that from “previous experience and from certain cultural conventions associated with this genre that ultimately the mystery will be fully explained” (Zunshine 122). For Auden, the definition of the crime novel was quite specific, and he argued that referring to the genre by “the vulgar definition, ‘a Whodunit’ is correct” (407). Auden went on to offer a basic formula stating that: “a murder occurs; many are suspected; all but one suspect, who is the murderer, are eliminated; the murderer is arrested or dies” (407). The idea of a formula is certainly a useful one, particularly when production demands—in terms of both quality and quantity—are so high, because the formula facilitates creators in the “rapid and efficient production of new works” (Cawelti 9). For contemporary crime fiction readers, the doorways to reading, discussed briefly above, have been cast wide open. Stories relying upon the basic crime fiction formula as a foundation can be gothic tales, clue puzzles, forensic procedurals, spy thrillers, hardboiled narratives, or violent crime narratives, amongst many others. The settings can be quiet villages or busy metropolises, landscapes that readers actually inhabit or that provide a form of affordable tourism. These stories can be set in the past, the here and now, or the future. Characters can range from Edgar Allan Poe’s C. Auguste Dupin to Dashiell Hammett’s Sam Spade, from Agatha Christie’s Miss Jane Marple to Kerry Greenwood’s Honourable Phryne Fisher. Similarly, language can come in numerous styles from the direct (even rough) words of Carter Brown to the literary prose of Peter Temple. Anything is possible, meaning everything is available to readers. For Auden—although he required a crime to be committed and expected that crime to be resolved—these doorways were only slightly ajar. For him, the story had to be a Whodunit; the setting had to be rural England, though a college setting was also considered suitable; the characters had to be “eccentric (aesthetically interesting individuals) and good (instinctively ethical)” and there needed to be a “completely satisfactory detective” (Sherlock Holmes, Inspector French, and Father Brown were identified as “satisfactory”); and the language descriptive and detailed (406, 409, 408). To illustrate this point, Auden’s concept of crime fiction has been plotted on a taxonomy, below, that traces the genre’s main developments over a period of three centuries. As can be seen, much of what is, today, taken for granted as being classified as crime fiction is completely excluded from Auden’s ideal. Figure 1: Taxonomy of Crime Fiction (Adapted from Franks, Murder 136) Crime Fiction: A Personal Journey I discovered crime fiction the summer before I started high school when I saw the film version of The Big Sleep starring Humphrey Bogart and Lauren Bacall. A few days after I had seen the film I started reading the Raymond Chandler novel of the same title, featuring his famous detective Philip Marlowe, and was transfixed by the second paragraph: The main hallway of the Sternwood place was two stories high. Over the entrance doors, which would have let in a troop of Indian elephants, there was a broad stained-glass panel showing a knight in dark armour rescuing a lady who was tied to a tree and didn’t have any clothes on but some very long and convenient hair. The knight had pushed the visor of his helmet back to be sociable, and he was fiddling with the knots on the ropes that tied the lady to the tree and not getting anywhere. I stood there and thought that if I lived in the house, I would sooner or later have to climb up there and help him. He didn’t seem to be really trying (9). John Scaggs has written that this passage indicates Marlowe is an idealised figure, a knight of romance rewritten onto the mean streets of mid-20th century Los Angeles (62); a relocation Susan Roland calls a “secular form of the divinely sanctioned knight errant on a quest for metaphysical justice” (139): my kind of guy. Like many young people I looked for adventure and escape in books, a search that was realised with Raymond Chandler and his contemporaries. On the escapism scale, these men with their stories of tough-talking detectives taking on murderers and other criminals, law enforcement officers, and the occasional femme fatale, were certainly a sharp upgrade from C.S. Lewis and the Chronicles of Narnia. After reading the works written by the pioneers of the hardboiled and roman noir traditions, I looked to other American authors such as Edgar Allan Poe who, in the mid-1800s, became the father of the modern detective story, and Thorne Smith who, in the 1920s and 1930s, produced magical realist tales with characters who often chose to dabble on the wrong side of the law. This led me to the works of British crime writers including Arthur Conan Doyle, Agatha Christie, and Dorothy L. Sayers. My personal library then became dominated by Australian writers of crime fiction, from the stories of bushrangers and convicts of the Colonial era to contemporary tales of police and private investigators. There have been various attempts to “improve” or “refine” my tastes: to convince me that serious literature is real reading and frivolous fiction is merely a distraction. Certainly, the reading of those novels, often described as classics, provide perfect combinations of beauty and brilliance. Their narratives, however, do not often result in satisfactory endings. This routinely frustrates me because, while I understand the philosophical frameworks that many writers operate within, I believe the characters of such works are too often treated unfairly in the final pages. For example, at the end of Ernest Hemingway’s A Farewell to Arms, Frederick Henry “left the hospital and walked back to the hotel in the rain” after his son is stillborn and “Mrs Henry” becomes “very ill” and dies (292–93). Another example can be found on the last page of George Orwell’s Nineteen Eighty-Four when Winston Smith “gazed up at the enormous face” and he realised that he “loved Big Brother” (311). Endings such as these provide a space for reflection about the world around us but rarely spark an immediate response of how great that world is to live in (Franks Motive). The subject matter of crime fiction does not easily facilitate fairy-tale finishes, yet, people continue to read the genre because, generally, the concluding chapter will show that justice, of some form, will be done. Punishment will be meted out to the ‘bad characters’ that have broken society’s moral or legal laws; the ‘good characters’ may experience hardships and may suffer but they will, generally, prevail. Crime Fiction: A Taste For Justice Superimposed upon Auden’s parameters around crime fiction, are his ideas of the law in the real world and how such laws are interwoven with the Christian-based system of ethics. This can be seen in Auden’s listing of three classes of crime: “(a) offenses against God and one’s neighbor or neighbors; (b) offenses against God and society; (c) offenses against God” (407). Murder, in Auden’s opinion, is a class (b) offense: for the crime fiction novel, the society reflected within the story should be one in “a state of grace, i.e., a society where there is no need of the law, no contradiction between the aesthetic individual and the ethical universal, and where murder, therefore, is the unheard-of act which precipitates a crisis” (408). Additionally, in the crime novel “as in its mirror image, the Quest for the Grail, maps (the ritual of space) and timetables (the ritual of time) are desirable. Nature should reflect its human inhabitants, i.e., it should be the Great Good Place; for the more Eden-like it is, the greater the contradiction of murder” (408). Thus, as Charles J. Rzepka notes, “according to W.H. Auden, the ‘classical’ English detective story typically re-enacts rites of scapegoating and expulsion that affirm the innocence of a community of good people supposedly ignorant of evil” (12). This premise—of good versus evil—supports Auden’s claim that the punishment of wrongdoers, particularly those who claim the “right to be omnipotent” and commit murder (409), should be swift and final: As to the murderer’s end, of the three alternatives—execution, suicide, and madness—the first is preferable; for if he commits suicide he refuses to repent, and if he goes mad he cannot repent, but if he does not repent society cannot forgive. Execution, on the other hand, is the act of atonement by which the murderer is forgiven by society (409). The unilateral endorsement of state-sanctioned murder is problematic, however, because—of the main justifications for punishment: retribution; deterrence; incapacitation; and rehabilitation (Carter Snead 1245)—punishment, in this context, focuses exclusively upon retribution and deterrence, incapacitation is achieved by default, but the idea of rehabilitation is completely ignored. This, in turn, ignores how the reading of crime fiction can be incorporated into a broader popular discourse on punishment and how a taste for crime fiction and a taste for justice are inextricably intertwined. One of the ways to explore the connection between crime fiction and justice is through the lens of Emile Durkheim’s thesis on the conscience collective which proposes punishment is a process allowing for the demonstration of group norms and the strengthening of moral boundaries. David Garland, in summarising this thesis, states: So although the modern state has a near monopoly of penal violence and controls the administration of penalties, a much wider population feels itself to be involved in the process of punishment, and supplies the context of social support and valorization within which state punishment takes place (32). It is claimed here that this “much wider population” connecting with the task of punishment can be taken further. Crime fiction, above all other forms of literary production, which, for those who do not directly contribute to the maintenance of their respective legal systems, facilitates a feeling of active participation in the penalising of a variety of perpetrators: from the issuing of fines to incarceration (Franks Punishment). Crime fiction readers are therefore, temporarily at least, direct contributors to a more stable society: one that is clearly based upon right and wrong and reliant upon the conscience collective to maintain and reaffirm order. In this context, the reader is no longer alone, with only their crime fiction novel for company, but has become an active member of “a moral framework which binds individuals to each other and to its conventions and institutions” (Garland 51). This allows crime fiction, once viewed as a “vice” (Wilson 395) or an “addiction” (Auden 406), to be seen as playing a crucial role in the preservation of social mores. It has been argued “only the most literal of literary minds would dispute the claim that fictional characters help shape the way we think of ourselves, and hence help us articulate more clearly what it means to be human” (Galgut 190). Crime fiction focuses on what it means to be human, and how complex humans are, because stories of murders, and the men and women who perpetrate and solve them, comment on what drives some people to take a life and others to avenge that life which is lost and, by extension, engages with a broad community of readers around ideas of justice and punishment. It is, furthermore, argued here that the idea of the story is one of the more important doorways for crime fiction and, more specifically, the conclusions that these stories, traditionally, offer. For Auden, the ending should be one of restoration of the spirit, as he suspected that “the typical reader of detective stories is, like myself, a person who suffers from a sense of sin” (411). In this way, the “phantasy, then, which the detective story addict indulges is the phantasy of being restored to the Garden of Eden, to a state of innocence, where he may know love as love and not as the law” (412), indicating that it was not necessarily an accident that “the detective story has flourished most in predominantly Protestant countries” (408). Today, modern crime fiction is a “broad church, where talented authors raise questions and cast light on a variety of societal and other issues through the prism of an exciting, page-turning story” (Sisterson). Moreover, our tastes in crime fiction have been tempered by a growing fear of real crime, particularly murder, “a crime of unique horror” (Hitchens 200). This has seen some readers develop a taste for crime fiction that is not produced within a framework of ecclesiastical faith but is rather grounded in reliance upon those who enact punishment in both the fictional and real worlds. As P.D. James has written: [N]ot by luck or divine intervention, but by human ingenuity, human intelligence and human courage. It confirms our hope that, despite some evidence to the contrary, we live in a beneficent and moral universe in which problems can be solved by rational means and peace and order restored from communal or personal disruption and chaos (174). Dorothy L. Sayers, despite her work to legitimise crime fiction, wrote that there: “certainly does seem a possibility that the detective story will some time come to an end, simply because the public will have learnt all the tricks” (108). Of course, many readers have “learnt all the tricks”, or most of them. This does not, however, detract from the genre’s overall appeal. We have not grown bored with, or become tired of, the formula that revolves around good and evil, and justice and punishment. Quite the opposite. Our knowledge of, as well as our faith in, the genre’s “tricks” gives a level of confidence to readers who are looking for endings that punish murderers and other wrongdoers, allowing for more satisfactory conclusions than the, rather depressing, ends given to Mr. Henry and Mr. Smith by Ernest Hemingway and George Orwell noted above. Conclusion For some, the popularity of crime fiction is a curious case indeed. When Penguin and Collins published the Marsh Million—100,000 copies each of 10 Ngaio Marsh titles in 1949—the author’s relief at the success of the project was palpable when she commented that “it was pleasant to find detective fiction being discussed as a tolerable form of reading by people whose opinion one valued” (172). More recently, upon the announcement that a Miles Franklin Award would be given to Peter Temple for his crime novel Truth, John Sutherland, a former chairman of the judges for one of the world’s most famous literary awards, suggested that submitting a crime novel for the Booker Prize would be: “like putting a donkey into the Grand National”. Much like art, fashion, food, and home furnishings or any one of the innumerable fields of activity and endeavour that are subject to opinion, there will always be those within the world of fiction who claim positions as arbiters of taste. Yet reading is intensely personal. I like a strong, well-plotted story, appreciate a carefully researched setting, and can admire elegant language, but if a character is too difficult to embrace—if I find I cannot make an emotional connection, if I find myself ambivalent about their fate—then a book is discarded as not being to my taste. It is also important to recognise that some tastes are transient. Crime fiction stories that are popular today could be forgotten tomorrow. Some stories appeal to such a broad range of tastes they are immediately included in the crime fiction canon. Yet others evolve over time to accommodate widespread changes in taste (an excellent example of this can be seen in the continual re-imagining of the stories of Sherlock Holmes). Personal tastes also adapt to our experiences and our surroundings. A book that someone adores in their 20s might be dismissed in their 40s. A storyline that was meaningful when read abroad may lose some of its magic when read at home. Personal events, from a change in employment to the loss of a loved one, can also impact upon what we want to read. Similarly, world events, such as economic crises and military conflicts, can also influence our reading preferences. Auden professed an almost insatiable appetite for crime fiction, describing the reading of detective stories as an addiction, and listed a very specific set of criteria to define the Whodunit. Today, such self-imposed restrictions are rare as, while there are many rules for writing crime fiction, there are no rules for reading this (or any other) genre. People are, generally, free to choose what, where, when, why, and how they read crime fiction, and to follow the deliberate or whimsical paths that their tastes may lay down for them. Crime fiction writers, past and present, offer: an incredible array of detective stories from the locked room to the clue puzzle; settings that range from the English country estate to city skyscrapers in glamorous locations around the world; numerous characters from cerebral sleuths who can solve a crime in their living room over a nice, hot cup of tea to weapon wielding heroes who track down villains on foot in darkened alleyways; and, language that ranges from the cultured conversations from the novels of the genre’s Golden Age to the hard-hitting terminology of forensic and legal procedurals. Overlaid on these appeal factors is the capacity of crime fiction to feed a taste for justice: to engage, vicariously at least, in the establishment of a more stable society. Of course, there are those who turn to the genre for a temporary distraction, an occasional guilty pleasure. There are those who stumble across the genre by accident or deliberately seek it out. There are also those, like Auden, who are addicted to crime fiction. So there are corpses for the conservative and dead bodies for the bloodthirsty. There is, indeed, a murder victim, and a murder story, to suit every reader’s taste. References Auden, W.H. “The Guilty Vicarage: Notes on The Detective Story, By an Addict.” Harper’s Magazine May (1948): 406–12. 1 Dec. 2013 ‹http://www.harpers.org/archive/1948/05/0033206›. Carter Snead, O. “Memory and Punishment.” Vanderbilt Law Review 64.4 (2011): 1195–264. Cawelti, John G. Adventure, Mystery and Romance: Formula Stories as Art and Popular Culture. Chicago: U of Chicago P, 1976/1977. Chandler, Raymond. The Big Sleep. London: Penguin, 1939/1970. ––. The Simple Art of Murder. New York: Vintage Books, 1950/1988. Christie, Agatha. The Mysterious Affair at Styles. London: HarperCollins, 1920/2007. Cole, Cathy. Private Dicks and Feisty Chicks: An Interrogation of Crime Fiction. Fremantle: Curtin UP, 2004. 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London: Random House, 1929/2004. ––. in R. Chandler. The Simple Art of Murder. New York: Vintage Books, 1950/1988. Hitchens, P. A Brief History of Crime: The Decline of Order, Justice and Liberty in England. London: Atlantic Books, 2003. James, P.D. Talking About Detective Fiction. New York: Alfred A. Knopf, 2009. Knight, Stephen. Crime Fiction since 1800: Death, Detection, Diversity, 2nd ed. New York: Palgrave Macmillian, 2010. Knox, Ronald A. “Club Rules: The 10 Commandments for Detective Novelists, 1928.” Ronald Knox Society of North America. 1 Dec. 2013 ‹http://www.ronaldknoxsociety.com/detective.html›. Malmgren, C.D. “Anatomy of Murder: Mystery, Detective and Crime Fiction.” Journal of Popular Culture Spring (1997): 115–21. Maloney, Shane. The Murray Whelan Trilogy: Stiff, The Brush-Off and Nice Try. Melbourne: Text Publishing, 1994/2008. Marsh, Ngaio in J. Drayton. Ngaio Marsh: Her Life in Crime. Auckland: Harper Collins, 2008. Orwell, George. Nineteen Eighty-Four. London: Penguin Books, 1949/1989. Roland, Susan. From Agatha Christie to Ruth Rendell: British Women Writers in Detective and Crime Fiction. London: Palgrave, 2001. Rzepka, Charles J. Detective Fiction. Cambridge: Polity, 2005. Sayers, Dorothy L. “The Omnibus of Crime.” The Art of the Mystery Story: A Collection of Critical Essays. Ed. Howard Haycraft. New York: Simon & Schuster, 1928/1947. 71–109. Scaggs, John. Crime Fiction: The New Critical Idiom. London: Routledge, 2005. Sisterson, C. “Battle for the Marsh: Awards 2013.” Black Mask: Pulps, Noir and News of Same. 1 Jan. 2014 http://www.blackmask.com/category/awards-2013/ Sutherland, John. in A. Flood. “Could Miles Franklin turn the Booker Prize to Crime?” The Guardian. 1 Jan. 2014 ‹http://www.guardian.co.uk/books/2010/jun/25/miles-franklin-booker-prize-crime›. Van Dine, S.S. “Twenty Rules for Writing Detective Stories.” The Art of the Mystery Story: A Collection of Critical Essays. Ed. Howard Haycraft. 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