Journal articles: 'Medical Society of the State of New York (1807- )' – Grafiati (2024)

Abstract:

BackgroundSince 2007, New York State (NYS) hospitals have been required to report surgical site infections (SSIs) following colon procedures to the NYS Department of Health, using the National Healthcare Safety Network (NHSN). The purpose of this study was to identify risk factors for the development of SSIs in patients undergoing colon procedures.MethodsNYS has been conducting validation studies at hospitals to assess the accuracy of the surveillance data reported by the participating hospitals. A sample of patients undergoing colon procedures in NYS hospitals were included in hospital-acquired infection program validation studies in 2009 and 2010. Medical chart reviews and on-site visits were performed to verify patient information reported and to evaluate additional risk factors for SSI. Bivariable and multivariable logistic regressions were performed.ResultsA total of 2,656 colon procedures were included in this analysis, including 698 SSI cases. Multivariable analysis indicated that SSI following colon procedure was associated with body mass index greater than 30 (odds ratio [OR], 1.48 [95% confidence interval (CI), 1.21–1.80]), male sex (OR, 1.34 [95% CI, 1.10–1.64]), American Society of Anesthesiologists physical classification score greater than 3 (OR, 1.33 [95% CI, 1.08–1.64]), procedure duration, transfusion (OR, 1.32 [95% CI, 1.05–1.66]), left-side colon surgical procedures, other gastroenterologic procedures, irrigation, hospital bed size greater than 500, and medical school affiliation.ConclusionsMale sex, obesity, transfusion, type of procedure, and prolonged duration were significant factors associated with overall infection risk after adjusting other factors. Additional factors not collected in the NHSN slightly improved prediction of SSIs.

Abstract:

Decisions to place limitations on the care of patients are complex, and they often involve physicians, other medical professionals, patients, or a surrogate decision-maker, family members, and others. In 1988, the Joint Commission on Accreditation of Health Care Organizations (JCAHO) and the New York State government adopted two different approaches to this complex issue of do-not-resuscitate (DNR) orders: one involved professional self-regulation, whereas the other mandated a standardized procedure requiring completion of legal documents. This study examines the impact of these two different approaches to writing of DNR orders for adult intensive care unit (ICU) patients on utilization and resulting length of stay. The study used three data bases. One is from a larger study designed to update the Mortality Probability Model (MPM), a measure of severity of illness for ICU patients. This data base includes consecutive admissions to the adult ICUs of four hospitals in the northeastern United States. The second is a similar data base from the European-North American Study of Severity Systems (ENAS), and it includes 20 hospitals. The third data base, a 1991 national survey of ICUs by the Society of Critical Care Medicine (SCCM), lists characteristics of patients in ICUs in the United States on a specific day. Logistic regression was used to analyze the first two data bases; the percentage of patients in New York with DNR orders was calculated for each of the three data bases and compared with patients in neighboring states. Length of ICU and hospital stay was measured in the first two data sets. In the MPM data, 14.4% of medical patients in New York had a DNR order written at the time of ICU discharge, compared with 198% of medical patients in Massachusetts; and 4.3% of New York surgical patients had a DNR order written at the time of ICU discharge, compared with 8.3% of surgical patients in Massachusetts. In the ENAS data, 7.4% of New York nonoperative patients has a DNR order in place within 24 hours, compared with 8.4% of such patients in the other states; and 1.0% of New York operative patients had DNR orders, compared with 3–5% of operative patients from other states. Logistic regression revealed that a New York patient was less likely to have a DNR order written than a patient located in one of the other states studied. Data from the SCCM survey demonstrated that the New York percentage of patients with “no CPR” orders was 5.50%, compared with a percentage of 6.87% in other states. With few exceptions, these differences between New York and surrounding states did not have an impact on hospital length of stay. During the period studied following implementation of New York's DNR Law, utilization of DNR orders in New York State was significantly lower than neighboring states. This decreased utilization, however, did not effect hospital utilization as measured through length of stay and ICU admissions.

Abstract:

The COVID-19 pandemic, caused by severe acute respiratory syndrome coronavirus 2, created an unprecedented need for comprehensive laboratory testing of populations, in order to meet the needs of medical practice and to guide the management and functioning of our society. With the greater New York metropolitan area as an epicenter of this pandemic beginning in March 2020, a consortium of laboratory leaders from the assembled New York academic medical institutions was formed to help identify and solve the challenges of deploying testing. This report brings forward the experience of this consortium, based on the real-world challenges which we encountered in testing patients and in supporting the recovery effort to reestablish the health care workplace. In coordination with the Greater New York Hospital Association and with the public health laboratory of New York State, this consortium communicated with state leadership to help inform public decision-making addressing the crisis. Through the length of the pandemic, the consortium has been a critical mechanism for sharing experience and best practices in dealing with issues including the following: instrument platforms, sample sources, test performance, pre- and post-analytical issues, supply chain, institutional testing capacity, pooled testing, biospecimen science, and research. The consortium also has been a mechanism for staying abreast of state and municipal policies and initiatives, and their impact on institutional and laboratory operations. The experience of this consortium may be of value to current and future laboratory professionals and policy-makers alike, in dealing with major events that impact regional laboratory services.

Abstract:

Early efforts in physiological research in the United States were produced by lone investigators working in laboratories funded by their own medical practices. In Europe, however, Claude Bernard and Carl Ludwig produced a new model of scientific research laboratories funded by the state that sought to develop the pursuit of biomedical research as an occupation. American physicians such as Henry Pickering Bowditch and S. Weir Mitchell were exposed to this new “research ethic” during their international studies and brought this new perspective home to America. Along with H. Newell Martin, these men began training professional physiologists who would assume new research positions in academic institutions. In 1887, Bowditch, Mitchell, and H. Newell Martin proposed the formation of a new society for these professional physiologists, the American Physiological Society (APS). Seventeen of the original twenty-eight members met on December 30, 1887, in New York City, NY, to establish APS. From these humble beginnings, APS evolved to become a force for change in American biomedical science.

Abstract:

The main field of scientific interests Yu.S. Vinnica - hepato-pancreatic-biliary surgery: acute pancreatitis, reconstructive biliary surgery, pancreatic injury, cholelithiasis and its complications; mechanical jaundice, surgery of the stomach and duodenum, herbiology with the use of reticular endoprostheses, surgery of the large intestine (x-ray endovascular surgery), purulent surgery, diabetic foot, frostbites (questions of the pathogenesis of cold trauma and the treatment of complications), immunodeficiency, cytokinotherapy, metabolic immunotherapy of surgical diseases, peritonitis; syndrome of systemic inflammatory response, use in surgery of new biopolymers - polyhydroxyalkanoates and medical products on their basis. Yu.S. Vinnik is the founder of the scientific school of abdominal and purulent surgery. Under the direction of Vinnik Yu.S. 47 candidate dissertations, 13 doctoral dissertations were defended. He is the author of more than 800 published works, 40 copyright patents of Russia, 37 monographs. Since 1995, he has been elected to the present time as a full member of the New York Academy of Sciences, since 1996 he has been an academician of the International Academy of Sciences on Ecology, Human and Nature Safety (MANEB), since 1999 - full member of the Russian Academy of Natural Sciences (RANS) since 2000 - Academician of the Russian Academy of Natural Sciences (RANS), Corresponding Member of the Russian Academy of Natural Sciences (RAE), Academician of the Petrovsky Academy of Sciences and Arts (PANI). Honored Doctor of the Russian Federation. Honored Worker of Science and Education of the Russian Federation. Member of the Editorial Board of the journals of the VAK "Annals of Surgical Hepatology", "Bulletin of Experimental and Clinical Surgery", "Surgery News", "Moscow Surgical Journal", "Siberian Medical Review", "Surgical Practice". Member of the Russian Society of Surgeons, the Russian Society of Surgeons-Hepatologists, the Russian Society of Surgeons-Gastroenterologists, the Russian Society of Herniologists, the Association of General Surgeons of the Russian Federation, the Russian Society of Endoscopic Surgeons.

Abstract:

We must be aware that freedom from organic disease alone can not be our goal. The optimal functioning of the individual must be our aim, and that it occur in an environment conducive to a fuller life. We must be aware that man does not live by bread alone, nor by his antihypertensive pill alone. We must be citizens of the community, helping to make it a better place for the raising of our children, for a fuller educational opportunity, for the development of the arts and other cultural aspects which help raise man above the level of animal life. Thus, the making of a doctor almost begins at his mother's knee. Nurtured further by society and its educational and Cultural institutions, he is finally given a privilege by society, to act in a responsible way in furthering the health, both physical and mental, of those he calls his patients. (Delivered to medical students and faculty, School of Medicine, University of South Dakota, May 1976 by Mitchell I. Rubin, MD, Emeritus Professor of Pediatrics, State University of New York at Buffalo, and Consultant in Pediatrics, Medical University of South Carolina).

Abstract:

It is with the deepest humility that I accept the Abraham Jacobi Award from the American Medical Association (AMA) and the American Academy of Pediatrics. Dr Jacobi represented the best in pediatrics, a practitioner in New York in 1853, Professor of Diseases of Children at New York Medical College in 1859, Chairman of the AMA Section Council on Pediatrics, founder and president of the American Pediatrics Society, and president of the American Medical Association. He was perhaps best known as a child advocate. Dr Jacobi believed that physicians should take an active interest in public policy. At an early age he was, and remained throughout his life, what would now be termed a "troublemaker." He actively pursued legislation for women and children in Albany, the state capitol, and in Washington, DC. Throughout his long and productive life, he felt comfortable only when championing a good cause.1-4 It is truly an honor to receive an award bearing his name. Before I begin my address, I would like to pay personal tribute to my dear wife Kathie, who has stood by me for 40 years throughout my shortcomings as a husband and father, as I pursued my interest in organized medicine as a child advocate. She has suffered through long waits for late dinners because of my practice or meetings, the yardwork that was never done because of office or hospital emergencies, and cared for our family alone while I attended meetings on the mainland. I would also like to honor my mentor, the late Dr Irvine McQuarrie, who "fathered" me during my first year of pediatrics residency in Hawaii.

Abstract:

As a Chinese American born in Peking and educated both in China and in the United States, the author has, for several decades, been interested in the impact of Chinese culture, including medicine, on American society. While holding a professorship in physiology and biophysics at the State University of New York, Downstate Medical Center, the author began to teach a course on Chinese medical history in the early 1960s. In 1972, he founded the Institute for Advanced Research in Asian Science and Medicine (IARASM) which publishes the American Journal of Chinese Medicine, holds international conferences for scholars and physicians interested in indigenous medical systems, trains physicians for acupuncture therapy, and fosters centers for urban primary health care. The author is a member of the World Health Organization's Expert Advisory Panel on Traditional Medicine. He is the Editor-in-Chief of the American Journal of Chinese Medicine which now reaches an audience in 45 countries. The IARASM is a World Health Organization Collaborating Center for Traditional Medicine. The author served on the Rockefeller Commission of New York State on Acupuncture in 1973, and, in the same year, served as a panel member of the National Institutes of Health Conference on Acupuncture. He visited China at the invitation of the Ministry of Public Health of the People's Republic of China or WHO in 1973, 1974, 1977, 1978, 1979, 1980, 1984, and 1987 when he chaired meetings and lectured to faculty of several medical schools. The author envisages that the process of integration of all indigenous medicines of various cultures will end in the 21st century, at which time the "ecumenical medicine" - a term first used by Joseph Needham - movement will not be necessary, for all forms of medicine will be one system. The author has a great interest in the furtherance of indigenous medicine and their integration into one system, but his views and observations, as all endeavors in humanity, are not infallible.

Abstract:

Purpose: With the advances in early detection, prevention, and treatment of some cancers, mortality rates in the United States have been consistently falling. However, with these successes have come substantial increases in the cost of cancer care. Antineoplastics are the leading class in hospital drug expenditures. Cancer treatments are causing a serious financial burden for patients, families, hospitals, and society at large, especially for those who are uninsured. Prescription assistance programs (PAPs) are offered by pharmaceutical manufacturers to provide medications at no out-of-pocket cost to medically indigent patients. To assist the Cancer Care Center at Nassau University Medical Center (NUMC) with drug costs for chemotherapies, a clinical pharmacist–managed PAP was implemented to procure chemotherapy medications from pharmaceutical manufacturers. NUMC is a safety-net teaching hospital in suburban New York. It serves mostly an indigent population, and its Level I trauma center has more than 77,000 emergency department visits per year. Methods: We observed all patients requiring assistance with chemotherapy who enrolled in PAPs from January 1, 2011, through December 31, 2012. The total number of visits in the clinic over 24 months was 9,405. Individuals potentially eligible for the PAP were identified by oncologists. Patients received a referral to the PAP when they mentioned to office personnel that they had difficulty obtaining medications or expressed financial concerns related to management. Results: The clinical pharmacist spent the majority of his time assisting uninsured individuals, working with charity pools from the drug manufacturers, and obtaining medications through the PAP. The program served 341 patients in 2011 and 579 patients in 2012. Medications obtained for these patients included both oral and parenteral chemotherapy drugs and antiemetics. The total cost savings of the medications was $908,944.11 in 2011 and $1,715,538.37 in 2012. In 2012, a total of 783 prescriptions were processed, and 775 were approved by the manufacturers (98.9%). Conclusion: PAPs provide a valuable safety net to ensure that uninsured patients with cancer receive needed prescription medications. The rising cost of health care and the high proportion of indigent patients have financially burdened the hospital. For the pharmacy department, this has resulted in a lack of compensation for pharmaceuticals dispensed to indigent patients. A pharmacy-based program to procure free medications for uninsured patients with cancer has helped to defray the expenses of the Cancer Care Center in providing care at NUMC, increased patient compliance with chemotherapy protocols, and allowed many patients to receive the treatments they otherwise would not have been able to afford.

Abstract:

Two significant, apparently unrelated, trends have emerged in American society and medicine. First, American medicine is reexamining its approach to dying. The Institute of Medicine, the American Medical Association and private funding organizations have recognized that too many dying people suffer from pain and other distress that clinicians can prevent or relieve. Second, this past decade has marked a sharp increase in the number of physicians prosecuted for criminal negligence based on arguably negligent patient care. The case often cited as a watershed is People u. Einaugfer, which involved a New York nursing home patient whose physician was convicted in 1993 of two criminal misdemeanors after he ordered an elderly dialysis patient to be tube fed through a peritoneal dialysis Catheter.How is the growing awareness of dying patients’ pain and the increasing willingness of prosecutors to charge physicians with crimes connected? Pain at the end of life is frequently treated with narcotics, prescription drugs that are closely regulated by state and federal law. That complex web of laws—and a growing fear of legal sanctions—has deterred physicians from prescribing controlled substances. As those legal sanctions move from disciplinary actions to criminal charges, physicians’ fears may expand.

Abstract:

Category: Foot & Ankle Introduction/Purpose: Medical coverage gap in United States refers to people who are uninsured because the state they are living has still opted-out of Medicaid expansion under Patient Protection and Affordable Care Act (PPACA) and they are too poor to be benefited from subsidies designed for middle-class Americans. A large percentage of this population lives in south. Despite increasing participation of the states in expanded Medicaid, it is still unclear that if such an expansion has led to improve the access to care. However, approximately one in three American is covered under Blue Cross Blue Shield (BCBS) private insurance. The purpose of this study is to determine the access to foot and ankle care based on medical insurance, nature of illness and Medicaid expansion of the state. Methods: Five pairs of Medicaid expended (California, New York, Ohio, Minnesota and Washington) and non-expanded (Utah, Texas, Alabama, Missouri, and North Carolina) states with different geographic location were selected for the study. Twenty providers from each state were randomly selected via American Orthopedic Foot & Ankle Society (AOFAS) directory with private or academic affiliations. Each provider’s office was contacted by fictitious call for the earliest available appointment in foot and ankle clinic. A standardized script was used by the same researcher every time for a 30 year old male patient with acute Achilles tendon rupture or chronic bunion with either Medicaid or BCBS insurances. Available appointment for physician was considered as an access to foot and ankle care. We registered time until appointment (if given) and reason for denial (if denied) on phone. We also recorded requirements for insurance details, PCP (Primary Care Physician) referral or imaging records. Results: 200 providers’ offices were contacted on phone for foot and ankle clinic appointment. Successful appointment was given by 36%(72/200) offices irrespective of condition and insurance. 29% of calls with Medicaid could successfully schedule an appointment compared to 43% when calling with BCBS(P=0.03). Success rate for appointment was same for Achilles rupture and Bunion (36% each). The mean time until earliest appointment was 10.7(range 1-37) days with Medicaid and 10.5 (range 1-45) days with BCBS. For Medicaid patients, no significant difference was found in appointment rates between expanded states (30%) and non-expanded (28%) states (P=0.82). Overall appointment success rate was highest in Utah (65%) and lowest in New York (10%). Differences were observed across geographical locations, as well as between academic and private institutes. Conclusion: In our study, access to foot and ankle care clinic seems to be significantly better with BCBS private insurance compared to Medicaid. Sample size is surely a limitation, but we have included more states than similarly-designed studies for better geographic variability. There was no significant difference for appointment wait-time between Achilles tendon rupture and Bunion as well as Medicaid and BCBS insurance. Medicaid expansion facility in the state has not been associated with higher success rate but associated with lengthening of wait-time. Inability to provide insurance details or PCP-referral is definitely an important barrier for the access to podiatric care.

Abstract:

In 1918 into a peasant family, was born A. A. Shalimov, who, after finishing school and technical school he enrolled in the Kuban medical Institute (1936-1941), he worked as a doctor in hospitals near Krasnodar, in Chita oblast (1941), in the cities of Bryansk and the eagle; chief surgeon of the Orel region (1949). In 1951, A. A. Shalimov returned to Bryansk, he defended his dissertation and received the title of Honored doctor of the RSFSR. Later A. A. Shalimov moved to Kharkov, he defended his doctoral dissertation (1957) and was appointed head of the Department of thoracic surgery and anesthesiology of the Ukrainian Institute of advanced training of physicians (1959), Director of the Kharkiv Institute of General and urgent surgery (1965), head of the Department of thoracoabdominal surgery of the Kiev Institute of improvement of doctors, as head of the surgical Department, the Director of Kiev research Institute of Hematology and blood transfusion (1970) and Kyiv Sri of clinical and experimental surgery (1971), chief surgeon of the Ministry of health of Ukraine (1980). A. Shalimov was elected a corresponding member of the Academy of Sciences of Ukraine (1969), academician of the National Academy of Sciences of Ukraine (1978). A. A. Shalimova awarded the title Hero of Socialist Labor of the USSR (1982), Hero of Ukraine with the order of Powers (2005). Alexander Shalimov 870 author of scientific papers, including 35 monographs, 112 inventions, he has trained 50 doctors and nearly 100 candidates of medical Sciences. A. A. Shalimov was awarded two orders of Lenin and red banner of Labor, order of the October Revolution, the order of the Ukrainian State (2005) and "For merits" of three degrees, medals and orders and medals of foreign States. Oleksandr Shalimov was a member of the Board of the Association of surgeons im. N. And. Pirogov, the International Association of surgeons, the all-Union scientific society of surgeons, gastroenterologists and cardiologists, Chairman of the Ukrainian Republican scientific society of surgeons, full member of the new York Academy of Sciences, editor-in-chief of the journal "Clinical surgery", Deputy of the Supreme Soviet of the Ukrainian SSR 8-10 convocations. The international chamber of the American biographical Institute, he was elected "Man of the year – 1997", awarded diploma of the International biographical centre of Cambridge University for achievements in medicine of the twentieth century. Died Alexander Shalimov February 28, 2006.

Abstract:

Calcium is an essential element for just about all cellular processes, and yet abnormally high levels of cellular calcium can cause cell death. The processes that control cellular levels of this metal ion are thus of critical importance to both normal and pathophysiological conditions. Essential in the regulation of intracellular calcium levels are the calcium channels associated with cell membranes, for instance, with the plasma and sarcoplasmic reticulum membranes of muscle cells. In recent years, there has been a tremendous increase in our knowledge of the structure and function of these channels. However, we also now realize that the term "calcium channels" is used to refer to a rather heterogeneous population of entities. In some instances, notably receptor-operated calcium channels, we have only indirect evidence for their existence, whereas with the voltage-dependent channels, considerable information is now available on their comparative physiology, pharmacology, and biochemistry. The main objective of the Symposium presented in Calgary during the 1989 CFBS meeting was to bring together experts in the area of the calcium channels associated with both smooth and striated muscle function so that they could present the current state of knowledge in this area.Dr. David Triggle, from the State University of New York in Buffalo, reviewed the importance of calcium and calcium channels in cellular function and highlighted the pharmacology of calcium channel antagonists particularly with respect to their effects on the L-type calcium channels associated with smooth muscle. Dr. Sidney Fleischer from Vanderbilt University, Nashville, Tennessee, focused on his work associated with the isolation and characterization of the calcium release channel – ryanodine receptor of the sarcoplasmic reticulum from striated muscle. Dr. Fleischer has referred interested readers to his recent review in the 1989 issue of the Annual Reviews of Biophysics and Biophysical Chemistry (18: 333–364). Dr. Balwant Tuana from the University of Ottawa presented an update complemented by original data from his laboratory in the Department of Pharmacology on the current state of knowledge of the structure of the L-type calcium channel associated with both skeletal and cardiac muscle. The last two speakers, Dr. Wayne Giles and Dr. Hamid Akbarali, both from the Department of Medical Physiology at the University of Calgary, completed the program by presenting a review of data concerning the electrical physiological properties of calcium-activated channels in cardiac and smooth muscle. Their manuscript highlights their recent studies, with co-workers in Calgary, of the properties of calcium-activated potassium currents from the human cystic artery.The organizers of this symposium, hosted by the Pharmacological Society of Canada, gratefully acknowledge the financial support of the Alberta Heart and Stroke Foundation, Alberta Heritage Foundation for Medical Research, Canadian Heart and Stroke Foundation, Canadian Federation of Biological Societies, Charles River Laboratories (Canada Ltd.), SynPhar Laboratories Inc., Fisher Scientific Ltd., Novopharm Ltd., and Mandel Scientific Co. Ltd. The artistic contribution from Sylvia Ficken of Medical Audiovisual Services in the Faculty of Medicine at Memorial University of Newfoundland, who drew the symposium logo reproduced on the title page, is also gratefully acknowledged.

Abstract:

Purpose Recent research finds that youth who identify as transgender or gender-expansive are disproportionately incarcerated in juvenile justice systems and are treated differently from their non-trans peers (Himmelstein and Brückner, 2011; Hunt and Moodie-Mills, 2012; Irvine, 2010; Mitchum and Moodie-Mills, 2014). Juvenile justice systems have paid little attention to this group of young people in terms of their unique service needs and risk factors. Using qualitative methods, the researchers analyze in-depth interviews and focus group findings from formerly incarcerated trans youth in juvenile justice settings to better understand their experiences. This paper aims to examine the challenges for young people, and, as well as considered recommendations for juvenile justice professionals to study toward making changes in policies, practices and programs that are needed to support young people who are transgender or gender expansive. Design/methodology/approach Using qualitative, case examples and descriptive analysis, this paper describes the experiences of trans youth in juvenile justice settings and studies toward developing models of promoting trans-affirming approaches to enhance juvenile justice institutions for trans and gender-expansive youth placed in them. The paper describes the evolution of an approach used by the authors, in New York state juvenile justice settings to increase a trans-affirming perspective as a central role in the organization’s strategy and design, and the methods it is using to institutionalize this critical change. Findings culled from the focus groups and in-depth interviews with 15 former residents of juvenile justice settings and several (3) key staff members from the juvenile justice system, focusing on policies, practices and training models are useful tools for assessing progress and recommending actions to increase the affirming nature of such systems. At its conclusion, this chapter will provide clear outcomes and implications for the development of policies, practices and programs with trans and gender expansive youth in juvenile justice systems. Findings Finding are conceptualized in six thematic categories, namely, privacy, access to health and mental health care, the difference between sexual orientation and gender identity, name and pronoun use, clothing, appearance and mannerism, and housing issues. Research limitations/implications This study is limited as it focuses on formerly incarcerated youth in the New York City area. Practical implications The following implications for practice stemming from this study are as follows: juvenile justice professionals (including judges, defense attorneys, prosecutors, probation officers and detention staff) must treat – and ensure others treat – all trans and gender-expansive youth with fairness, dignity and respect, including prohibiting any attempts to ridicule or change a youth’s gender identity or expression. Having written nondiscrimination and anti-harassment policy is also essential. These policies can address issues such as prohibiting harassment of youth or staff who are trans or gender expansive, requiring the use of respectful and inclusive language and determining how gender rules (e.g. usage of “male or “female” bathrooms, gender-based room assignments) will be addressed for transgender and gender-nonconforming youth. Programs should also provide clients and staff with training and helpful written materials. Juvenile justice professionals must promote the well-being of transgender youth by allowing them to express their gender identity through choice of clothing, name, hair-style and other means of expression and by ensuring that they have access to appropriate medical care if necessary. Juvenile justice professionals must receive training and resources regarding the unique societal, familial and developmental challenges confronting trans youth and the relevance of these issues to court proceedings. Training must be designed to address the specific professional responsibilities of the audience (i.e. judges, defense attorneys, prosecutors, probation officers and detention staff). Juvenile justice professionals must develop individualized, developmentally appropriate responses to the behavior of each trans youth, tailored to address the specific circ*mstances of his or her or their life. Social implications Providing trans-affirming services to youth in juvenile justice settings is a matter of equity and should be the goal strived for by all systems that care for these young people. Helping trans and gender-expansive youth reenter and reintegrate into society should be a primary goal. There are many organizations and systems that stand ready to assist juvenile justice systems and facilities in supporting trans and gender expansive youth in their custody and helping them to rehabilitate, heal and reenter a society that welcomes their participation and where they can thrive and not just survive. Originality/value The paper is original in that it examines the lived experiences of trans and gender-expansive youth in juvenile justice systems. An area, which has not been fully explored in the professional literature.

Abstract:

Over the last five years, the Center for Migration Studies of New York (CMS) has conducted four surveys of Catholic immigrant-serving institutions, programs, and ministries in the United States. These surveys identify the multi-faceted needs of immigrants and refugees, and examine the successes and challenges of Catholic institutions in responding to them. CMS administered its most recent survey, the Catholic Refugee and Immigrant Service Integration Survey (the “CRISIS Survey”) from December 14, 2020 through February 5, 2021. This survey explored the work of Catholic institutions during the Trump administration and the COVID-19 pandemic. The CRISIS Survey documents the reach, diversity, and productivity of Catholic institutions that worked with immigrants and refugees during a pandemic that particularly devastated their communities and an administration whose policies and rhetoric made their work far more difficult. At a time of rampant “Catholic decline” narratives, the survey also documents the reach, vitality, and relevance of Catholic immigrant-serving institutions. It identifies the obstacles encountered by immigrants in accessing Catholic programs and ministries — both organizational (funding, staffing, and siting) and exogenous (federal policies, the pandemic, and community opposition). It underscores the threat posed by US immigration policies to immigrants and to the work of Catholic institutions. Survey respondents reported that they offered new services during this period, such as: Financial assistance for families, particularly those at risk of losing housing or utilities. COVID-19 testing, education, contact tracing, and quarantine services. Mental health services. Grief support and assistance with funeral expenses. Delivery of food and sanitation supplies for infected and other homebound persons. Voter registration and Census promotion activities. Virtually all respondents provided services remotely during the pandemic. Many reported on difficulties faced by immigrants in accessing their services, due to poor internet connections, limited computer access, and lack of communications technology and training. Respondents identified several factors that negatively affected immigrants’ access to their services pre-pandemic. As in previous CMS surveys, these factors included lack of immigration status, negative community attitudes toward immigrants, fear of apprehension (particularly after traffic stops) and deportation, public transportation deficiencies, stigma over receipt of mental health services, and identification requirements to access public benefits. Respondents also reported on obstacles in working with immigrants during the pandemic. These included the pandemic itself, limited funding, demand that outpaced resources, government restrictions on relief and benefit eligibility, and (particularly for students) living arrangements, work, and family caretaking responsibilities. Respondents overwhelmingly believed that immigration enforcement, tied to fear of deportation, very negatively or somewhat negatively affected participation in their services and programs. In Catholic terms, they reported that nativist immigration policies, rhetoric, and media sources interfered with their practice of discipleship. One respondent stated, “Fear of ICE and round-ups, locally in our state and nationally, along with negative immigration rhetoric from the out-going president have made our clients very fearful to access services they rightly qualify for.” A healthcare provider reported that immigrants were “avoiding or delaying seeking treatment for COVID-19 for fear of apprehension and/or deportation.” Many said that enforcement partnerships between Immigration and Customs Enforcement and states and localities made immigrants fearful of reporting crimes or accessing government facilities. One said that potential sponsors feared coming forward to reunify with children. Respondents also cited as problems delays in family reunification, barriers to asylum-seekers entering the United States, decreased refugee admissions, and the Trump administration's rule on the public charge ground of inadmissibility. The report recommends that Catholic institutions take stock of the creative new programs, skills and capacities that they have developed during the pandemic and build on them. It also recommends that scholars and researchers prioritize independent, person-centered research that critically analyzes the work of Catholic immigrant-serving institutions. Such research would ask whether these institutions, in the words of Pope Francis, are putting “the person at the center, in his or her many aspects” and honoring the “fundamental equality” of every person. It would draw on the perspectives of immigrants served by Catholic institutions to examine the degree to which these institutions advance the rights, participation, and wellbeing of immigrants and their families in US society. Finally, it would analyze how Catholic institutions work with each other — within Arch/dioceses, regionally, nationally, and across these realms — in response to the cross-cutting needs of immigrants. The report recommends that Catholic institutions develop programmatic plans to ensure that immigrants can return to or can continue to access their programs and ministries as the pandemic subsides. These plans will need to combine communication strategies, financial support, and services such as transportation and childcare. In addition, Catholic institutions should make it a high priority to ensure that immigrants can access the infrastructure, platforms, and training that will allow them to access virtual services. They should also develop strategies to engage Catholics who do not understand, who ignore, or who work at cross-purposes to Catholic teaching and policy positions in this area. Finally, they should redouble their work with the administration and Congress to reform US immigration laws, and with states and localities to promote welcoming and inclusive communities.

Abstract:

This article provides the review of the medical use of pH- and temperature-sensitive polymer hydrogels. Such polymers are characterised by their thermal and pH sensitivity in aqueous solutions at the functioning temperature of living organisms and can react to the slightest changes in environmental conditions. Due to these properties, they are called stimuli-sensitive polymers. This response to an external stimulus occurs due to the amphiphilicity (diphilicity) of these (co)polymers. The term hydrogels includes several concepts of macrogels and microgels. Microgels, unlike macrogels, are polymer particles dispersed in a liquid and are nano- or micro-objects. The review presents studies reflecting the main methods of obtainingsuch polymeric materials, including precipitation polymerisation, as the main, simplest, and most accessible method for mini-emulsion polymerisation, microfluidics, and layer-by-layer adsorption of polyelectrolytes. Such systems will undoubtedly be promising for use in biotechnology and medicine due to the fact that they are liquid-swollen particles capable of binding and carrying various low to high molecular weight substances. It is also important that slight heating and cooling or a slight change in the pH of the medium shifts the system from a hom*ogeneous to a heterogeneous state and vice versa. This providesthe opportunity to use these polymers as a means of targeted drug delivery, thereby reducing the negative effect of toxic substances used for treatment on the entire body and directing the action to a specific point. In addition, such polymers can be used to create smart coatings of implanted materials, as well as an artificial matrix for cell and tissue regeneration, contributing to a significant increase in the survival rate and regeneration rate of cells and tissues. References 1. Gisser K. R. C., Geselbracht M. J., Cappellari A.,Hunsberger L., Ellis A. B., Perepezko J., et al. 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Abstract:

CREATING CONSPIRACY BELIEFS: How Our Thoughts Are Shaped by Dolores Albarracín et al. New York: Cambridge University Press, 2022. 308 pages. Paperback; $39.99. ISBN: 9781108965026. *Conspiracy thinking is a prominent topic of discussion in American life today--and Christians, with their concern for truth, should not only be informed about, but contributing to, this discussion. This includes awareness of how scholars in the neuro-psychological and social sciences are contributing to our understanding of the nature of conspiracy thinking. *This book investigates the causes of conspiracy thinking in the United States. Its authors draw their findings from existing social scientific literature on conspiracism, general social psychology research, and six empirical statistical studies conducted during the last two years of the Trump presidency (2019-2021): three cross-sectional online surveys, a longitudinal phone panel survey on "deep state" conspiracy claims, a "manipulation" of fear experiment on the alleged relationship between the COVID-19 virus and 5G technology, and a social media study of Twitter hashtags and "fear words." *This book shares many similarities with previous academic works on conspiracy thinking--for example, Hofstadter (1965), Pipes (1997), Robins and Post (1997), Sunstein and Vermeule (2008), Barkun (2013), and Uscinski and Parent (2014)--but distinguishes itself by relying extensively on recent polling data and statistics instead of interviews, case studies, newspaper op-eds, or conspiracist media. Indeed, the authors consciously dispute psychological works that scrutinize the personality traits and life experiences of conspiracy believers, and political science works that link conspiracy fears to power asymmetries. Such approaches, they contend, insufficiently explain the process through which conspiracy beliefs are spread. They argue, instead, that psychological and political factors are themselves shaped by a mixture of personal, media, and social media contacts. *Their central aim is thus to examine how patterns of media consumption shape conspiracy beliefs, habits that are themselves affected by one's pre-existing feelings of anxiety, which is herein defined as a nonspecific "perception of threat [that] depends on relatively stable psychological motivations of belief defense [the desire to maintain a coherent set of beliefs], belief accuracy [the desire to maintain a realistic view of the world], and social integration [the desire for trust, status, and acceptance within a group], as well as sociopolitical factors and situational factors like communications and media exposure" (p. 163). *When these needs are not met, anxiety rises. But whereas desire for belief accuracy produces, on its own, an increase in critical discernment--and hence a decrease in false conspiracy beliefs--the combination of pre-existing anxiety (e.g., feelings of ostracism) with shared conspiracy narratives increases one's predisposition to believe conspiracy claims. When one's need for closure and community trumps their need for belief accuracy, new information will be interpreted in ways that justify their emotional state and existing beliefs. The emotional turmoil and social discomfort of anxious individuals make them more prone to accept conspiracist interpretations for troubling situations, drawing them into an alternative "media ecosystem." *Assent to conspiracy claims occurs when anxiety is assuaged by theories that offer plausible and unfalsifiable "proofs" of "hidden hand" driving events. Plausibility is achieved when a theory offers the believer historic similarity (similar plots occurred in the past), psychological similarity (the enemy's alleged motive is conceivable), and normative plausibility (other members of one's community share the same belief). The unfalsifiable nature of conspiracy claims lies in their assertion that proofs of a nefarious plot have been hidden or destroyed by the conspirators; such claims dovetail with the believer's existing distrust of authoritative sources of information. The repetition of conspiracist messages by like-minded others (friends, social networks, etc.), and by popular media (e.g., Fox News) reinforces these beliefs. The believer's wounded ego can further elicit schizotypy, paranoia, and narcissism, which serve as means of self-defence against debunkers and skeptics. *The influence of various media is proportional to time spent with, and trust placed in, these sources of information, along with the consumer's prior levels of neuroticism, suspiciousness, and impulsivity. Online media have an additional influence via their use of bots, individually tailored algorithms, and various forms of "information laundering" in reply threads and chatrooms. Heavy media consumption aligns the consumer's view of the world with the one shown in their preferred media. *The prime contribution of this book is its postulation that anxiety precedes conspiracy thinking (rather than the inverse), a psychological explanation for conspiracy belief that does not lead its authors to conclude, as others have, that conspiracism is inherently a form of neurosis. However, its heavy use of statistics, jargon, and unduly complicated flowcharts renders the text onerous, especially for those without statistical training. Given that this is meant to be the book's most 'important new input into the literature, it is also its greatest weakness. *Despite the great efforts made by its authors to produce a detailed empirical study of the effects of media on conspiracy beliefs, the book's conclusions are somewhat underwhelming as they echo the findings of many previous studies and offer few new insights into the topic. For instance, their claim that social interaction is the "proverbial elephant in the room" (pp. xiii, 205) is hardly convincing. The media consumption habits of conspiracy believers are a recurring theme throughout the literature, and none make the claim that conspiracy beliefs develop in an information vacuum. The book's conclusion that anxiety serves as an "intervening mechanism" (p. 87) between conspiracy claims and a person's needs for closure and social integration in not particularly revelatory either. That humans are social animals is an argument as old as Aristotle, and that conspiracy myths help insecure individuals improve their sense of social cohesion is at least as old as Karl Popper's "conspiracy theory of society."1 *The book's statistical data also exhibits several flaws, leading its authors to wrongly conclude, as Hofstadter did in 1965, that the phenomenon of conspiracy thinking is essentially a product of conservative angst2--a claim that has been powerfully disproven by many of Hofstadter's critics. This may be due to the timeframe of the authors' research studies, which were conducted mostly during and after President Trump's first impeachment trial (in 2019-2020), which elicited a massive conservative media backlash. It could also be due to their failure to examine long-term patterns of conspiracy chatter, which would have shown (see Uscinski and Parent, 2014) that conspiracy ideation ebbs and flows along political lines over longer periods of time. Their data also contains some unrepresentative samples, namely, the overrepresentation of low-wage earners, the unemployed, and the highly educated, and the underrepresentation of working-class high school graduates and Hispanics (pp. 243-44). *One could surmise that such flaws are due to an extraordinary historical context (the Trump presidency and COVID-19 restrictions), but they are also likely attributable to the implicit political biases of current social psychological research, which, as Duarte et al. demonstrated,3 is strongly skewed to the political left. This is made evident in the authors' clearly stated opinion that conservative media is the primary cause of conspiracy beliefs and related violence (pp. 224, 169-70) from which its audience--akin to cultists and terrorists--should be deprogrammed with "corrective alternatives" and ridicule (p. 215). This seems to contradict their 'primary claim that anxiety is the underlying cause (and not the product) of conspiracy beliefs, which should presumably be allayed with kinder methods than these. By identifying conspiracy theories as both a product of right-wing media and, simultaneously, as a "type of misinformation" (p. 11), the authors leave themselves open to the charge of circular reasoning. Indeed, their political bias is shown in their frequent use of contested progressive concepts and phrases such as "racialized," "Latinx," "pro-social behavior to reduce [one's] carbon footprint," and by 'connecting peaceable conservative media such as Focus on the Family to the use of gun violence by Edgar Maddison Welch in a Washington pizzeria (p. 219). *The small number of conspiracy theories on which the authors based their surveys is another example of skewed sampling. Most of these represent themes that cause far more anxiety to conservatives than liberals (for example, the "deep state," COVID-19 restrictions, illegal immigration, President Obama's birth certificate), while little attention is given to conspiracy theories that traditionally appeal to the political left (for 'example, JFK, 9/11, GMOs, "BigPharma," CIA malfeasance, Hurricane Katrina) or to progressives' fears about policing, systemic racism, abortion rights, or gender identity, making it all the more likely that their research subjects who displayed conspiracist thinking stood on the right side of the political fence. *Finally, the book spends too much time discussing tangentially pertinent psychological research (for example, the influence of music on pain and imitative suicide) and too little detailing the content and origins of the few conspiracy theories their research is based on (with the exception of the 2016 "Pizzagate" panic). This makes the book difficult for the layperson to follow, when it is compared to academic works such as those of Barkun4 or Uscinski and Parent,5 which are accessible to a nonspecialized audience. Few details are given, for instance, of the Tuskegee syphilis experiments, which are mentioned frequently but never in detail as an example of a genuine government conspiracy (rather than a significant but nonsinister breach of medical ethics). In the end, the book complements the rest of the literature but falls short of providing significant new insights, and is unlikely to elicit interest among laypersons, especially those who hold conspiracy beliefs. * Notes *1Karl R. Popper, Conjectures and Refutations: The Growth of Scientific Knowledge (New York: Routledge & Kegan Paul, 1963). *2Richard Hofstadter, The Paranoid Style in American Politics, And Other Essays (New York: Knopf, 1965). *3José L. Duarte et al., "Political Diversity Will Improve Social Psychological Science," Behavioral and Brain Sciences 38 (2015): e130, https://doi.org/10.1017/S0140525X14000430. *4Michael Barkun, A Culture of Conspiracy: Apocalyptic Visions in Contemporary America (Berkeley, CA: University of California Press, 2013). *5Joseph E. Uscinski and Joseph M. Parent, American Conspiracy Theories (Oxford, UK: Oxford University Press, 2014). *Reviewed by Michel Jacques Gagné, Champlain College, St. Lambert, QC J4P 3P2. Michel is a historian and author of Thinking Critically about the Kennedy Assassination: Debunking the Myths and Conspiracy Theories (Routledge, 2022).

Abstract:

ABSTRACT Over the past century, society has achieved great gains in medicine, public health, and health-care infrastructure, particularly in the areas of vaccines, antibiotics, sanitation, intensive care and medical technology. Still, despite these developments, infectious diseases are emerging at unprecedented rates around the globe. Large urban centers are particularly vulnerable to communicable disease events, and must have well-prepared response systems, including on the front-line level. In November 2018, the United States’ largest municipal health-care delivery system, New York City Health + Hospitals, hosted a half-day executive-level pandemic response workshop, which sought to illustrate the complexity of preparing for, responding to, and recovering from modern-day infectious diseases impacting urban environments. Attendees were subjected to a condensed, plausible, pandemic influenza scenario and asked to simulate the high-level strategic decisions made by leaders by internal (eg, Chief Medical Officer, Chief Nursing Officer, and Legal Affairs) and external (eg, city, state, and federal public health and emergency management entities) partners across an integrated system of acute, postacute, and ambulatory sites, challenging players to question their assumptions about managing the consequences of a highly pathogenic pandemic.

Abstract:

In February 2021, during the third COVID-19 lockdown in the state of Victoria, Australia, artist Shaun Wilson used the teleconferencing platforms Teams and Skype to create a slow cinema feature length artwork titled Fading Light to demonstrate how innovative creative practice can overcome barriers of distance experienced by creative practitioners from the limitations sustained during the COVID-19 pandemic. While these production techniques offer free access to develop new methodologies through practice, the wider scope of pandemic lockdowns mediated artists with teleconferencing as a tool to interrogate the nature of life during our various global lockdowns. It thus afforded a pioneering ability for artists to manufacture artwork about lockdowns whilst in lockdown, made from the tools commonly used for virtual communication. The significance of such opportunities, as this article will argue, demonstrates a novel approach to making artwork about COVID-19 in ways that were limited prior to the start of 2020 in terms of commonality, that now are “turning us all into broadcasters, streamers and filmmakers” (Sullivan). However, as we are only just becoming familiar with the cultural innovation pioneered from the limitations brought about by the pandemic, new aesthetics are emerging that challenge normative traditions of manufacturing and thinking about creative artefacts. Teleconferencing platforms were used differently prior to 2020 when compared to the current pandemic era. Throughout the 2000s and 2010s, there were no global gigascale movement restrictions or medical dangers to warrant a global shutdown that would ultimately determine how a person interacts with public places. In a pre-pandemic context, the daily use of teleconferencing was a luxury. Its subsequent use in the COVID-19 era became a necessity in many parts of day-to-day life. As artists have historically been able to comment through their work on global health crises, how has contemporary art responded since 2020 in using teleconferencing within critical studio practice? To explore such an idea, this article will probe examples of practice from artists making artworks with teleconferencing about pandemics during the COVID-19 pandemic. Discussion will purposely not consider a wider historical scope of teleconferencing in art and scholarship as the context in this article explicitly addresses art made in and commenting on the COVID-19 pandemic using the tools of lockdown readily available through teleconferencing platforms. It will instead concentrate on three artists addressing the pandemic during 2020 and 2021. The first example will be There Is No Such Thing as Internet from Polish artists Maria Magdalena Kozlowska and Maria Tobola, “performers who identify as one artist, Maria Małpecki” (“Pogo”). The second example is New York artist Michael Mandiberg’s Uncle Bob 85th Birthday via Zoom 3:00-4:00PM, August 16, 2020 (#24), from the series Zoom Paintings. The third example is Australian artist Shaun Wilson’s Fading Light. These works will be discussed as a means of considering teleconferencing as a contemporary art medium used in response to COVID-19 and art made as pandemic commentary through the technology that has defined its global social integration. Figure 1: Maria Małpecki, There Is No Such Thing as Internet, used with permission. There Is No Such Thing as Internet was presented as a live stream on 7 May 2020 and as an online video between 7-31 May 2020 in the “Online co*cktail Party with Maria Małpecki” at Pogo Bar, KW Institute for Contemporary Art, Berlin by Maria Małpecki and curator Tomek Pawlowski Jarmolajew (“Pogo”). The work represents a twenty-minute livestream essay created in part by a teleconferencing video call performance and appropriated video streams. This includes video chat examples from Chomsky and Žižek, compiled together through intertextual video collages which The Calvert Journal described as a work “that explore[s] identity and different modes of communication in times of isolation” (De La Torre). One of the key strengths of this work in terms of teleconferencing is how it embraces the medium as an integral part of the performative methodology. To such an extent, one might argue that if it was removed and replaced by traditional video camera shots, which do feature in the video but are not the main aesthetic driver, the Metamodernist troupe of Małpecki’s videos would not perform the same critique of the pandemic. So, for Małpecki to comment on isolation through the Internet requires video calls to be central in the artwork in order for it to hold the cultural value it embeds through the subject. The conceptual framework relies on short segments to create episodic moments reliant on philosophical laments relating to each part of the work. For example, the first act unfolds with a montage of short video clip collages reminiscent of the quick-clip YouTube browsing habit culture from the pandemic to expedite an argument that indeed, there really is no singular internet. Rather, from this, what we are experiencing is arguably something else entirely. From here we move to the second act titled “We wake up in a different room every morning. We wander in a labyrinth where most doors are already open” (Małpecki); but as Małpecki comments, “sometimes our job is to shut them”. The sequence evolves into a disorientating dual screen sequence of the artists panicking to what they are viewing on screen. What this is exactly remains unclear. It may be us as the audience or something else as Malpecki holds their webcam devices upside down to provide an unnerving menage amidst the screams and exacerbations that invites spatial disorientation as a point of engagement for the viewer. As we recognise that video call protocols during the pandemic are visually static and that normative ‘rules’ of video calls require stabilised video and clean sound, Małpecki subverts these protocols to that of an uncomfortable, anarchic performance. It's at odds with the gentility of video call aesthetics which, in the case of this artwork, is more like watching a continuous point of view shot from a participant on a roller coaster or an extreme fairground ride. As the audience moves through each of the eclectic acts, this randomness laments a continuity that, sometimes satirical and at other times sublime, infuses the silliness and obliqueness of habitual lockdown video viewing. Even the most mundane of videos we watch to pass the time have become anthems of the COVID-19 era as a mixture of boredom, stupidity, and collective grief. Małpecki’s work in this regard becomes a complex observation for a society in crisis. It eloquently uses video calls as a way to comment on what this article argues to be an important cultural artefact in contemporary art’s response to COVID-19. Just as Goya subverted the Venetian pandemic in the grim Plague Hospital, Małpecki reflects our era in the same disruptive way by using frailty as a mirror to reveal an uneasy reflection masked in satirical obscurity, layered with fragments of the Internet and its subjective “other”. Figure 2: Michael Mandiberg, Uncle Bob 85th Birthday via Zoom 3:00-4:00PM, August 16, 2020 (#24), used with permission. Conversely, the work of New York artist Michael Mandiberg uses teleconferencing in a different way by painting the background of video calls onto stretched canvases mostly over the duration of the actual call time. Yet in doing so, the removal of people from inside the frame highlights aspects of isolation and absence in lockdown. At the Denny Dinin Gallery exhibition in New York, The Zoom Paintings “presented in the digital sphere where they were born” (Defoe). Zoom provided both the frame and the exhibition space for these works, with “one painting … on view each day [on Zoom], for a total of ten paintings” (“Zoom”). Describing the works, Mandiberg states that they are “about the interchangeability of people and places. It’s not memorializing a particular event; it’s memorializing how unmemorable it is” (Mandiberg; Defoe). This defines an innovative approach to teleconferencing that engages with place in times when the same kinds of absence experienced in the images of peopleless Zoom video calls mirror the external absence of people in public places during lockdown. Uncle Bob 85th Birthday via Zoom 3:00-4:00PM, August 16, 2020 (#24) is time stamped with the diaristic nature of the Zoom Paintings series. These works are not just a set of painting subjects interlinked through a common theme of paintings ‘about Zoom backgrounds’. They, rather, operate as a complex depiction of absence located in the pandemic, evidently capturing a powerful social commentary about what the artist experienced during these times. In doing so, it immediately prompts the viewer into tensions that conceptually frame COVID-19, whether that be the isolation of waiting out the pandemic in lockdown, the removal of characters through illness from the virus, or even a sudden death from the virus itself. The camera’s point of view illustrates an empty space where we know something is missing. At the very least the artist suggests that someone nearby once inhabited these empty spaces but they are, at present, removed from the scene or have vanished altogether. On 16 August 2020, the day that the painting was made, the New York Times estimated that 514 people in the United States died from COVID-19 (“Coronavirus”). When measured against a further death rate peaking at 5,463 people in the United States who died on 11 February 2021, the catastrophic mortality data in the United States alone statistically supports Mandiberg’s lament as to the severity of the pandemic, which serves as the context of his work. Based on this data alone, the absence in Mandiberg’s paintings intensifies a sense of isolation and loss insofar as the subjectivity embedded within the video call frame speaks to a powerful way that contemporary art is providing commentary during the pandemic (“Coronavirus”). Art in this context becomes a silent observer using teleconferencing to address both what is taken away from us and what visually remains behind. This article acknowledges the absence in Mandiberg’s paintings as a timely reminder of the socio-devastation experienced in the pandemic’s wake. Therein lies a three-folded image within an image within an image, not unlike what we see in Blade Runner when Deckard’s Esper Machine investigates the reflection in a mirror of someone else, and no more vivid than in Van Eyck’s Arnolfini Portrait. From a structural point of view, we witness Mandiberg’s images during its exhibition on Zoom in much the same conceptual way. In this case though, it is a mirrored online image of an image painted from a video call interpreted online from a recorded image transmitted online through teleconferencing. Through similar transactions, Shaun Wilson’s utilisation of video calls is represented in Fading Light as a way to comment on COVID-19 through the lens of Teams and Skype. The similarities of Fading Light to There Is No Such Thing as Internet stem obviously from the study of figuration used as the driver of the works but at the same time, it also draws comparison with Mandiberg’s stillness as represented in the frozen poses of each figure. At a more complex level, there is, though, a polar opposite in the mechanics that, for Mandiberg, uses video to translate into painted subjects. Fading Light does the opposite, with paintings recontextualised into video subjects. Such an analysis of both works brings about a sense of trepidation. For Mandiberg, it is the unsettling stillness through absence. In Fading Light it is the oppressive state of the motionlessness in frame that offers the same sense of awkwardness found in Mandiberg’s distorted painted laptop angles, and that makes the same kind of uncomfortableness bearable. It is only as much as an audience affords the time to allow before the loneliness of the subject renders the Zoom paintings a memorial to what is lost. Of note in Fading Light are the characteristically uncomfortable traits of what we detect should be in the frame of the subject but isn’t, which lends a tension to the viewer who has involuntarily been deprived of what is to be expected. For a modern Internet audience, a video without movement invites a combination of tension, boredom, and annoyance, drawing parallels to Hitchco*ck’s premise that something has just happened but we’re not entirely sure exactly what it was or is. Likewise, Małpecki’s same juxtaposition of tension with glimpses of Chomsky and Žižek videos talking over each other is joined by the artists’ breaking the fourth wall of cinema theory. Observing the artists lose concentration while watching the other videos in the video call scenario enact the mundane activities we encounter in the same kinds of situations of watching someone else on Zoom. However, in this context, we are watching them watching someone else whom we are also watching, while watching ourselves at the same time. Figure 3: Shaun Wilson, Fading Light, used with permission. The poses in Fading Light are reconfigured from characters in German medieval paintings and low relief religious iconography created during the Black Death era. Such works hang in the Gothic St. Michael’s Church in Schwäbisch Hall in Germany originally used by Martin Luther as his Southern Germany outpost during the Reformation. Wilson documented these paintings in October 2006, which then became the ongoing source images used in the 51 Paintings Suite films. The church itself has a strong connection to pandemics where a large glass floor plate behind the altar reveals an open ossuary of people who died of plague during the Black Death. This association brings an empirical linkage to the agency in Fading Light that mediates the second handed nature of the image, initially painted during a medieval pandemic, and now juxtaposed into the video frame captured in a current pandemic. From a conceptual standpoint, the critical analysis reflected in such a framework allows the artwork to reveal itself at a multi-level perspective, operating within a Metamodernist methodology. Two separate elements oscillate in tandem with one another, yet completely independent, or in this case, impervious to each other’s affect. Fading Light’s key affordance from this oscillation consolidate Wilson’s methodology in the artwork in as much detail as what Małpecki and Mandiberg construct in their respective works, yet obviously for very different motivations. If the basis of making video art in the pandemic using teleconferencing changes the way we might think about using these platforms, which otherwise may not have previously been taken serious by the academy as a valid medium in art, then the quiet meaningfulness throughout the film transcends a structured method to ascertain a pictorial presence of the image in its facsimile state. This pays respect to the source images but also embraces and overlays the narrative of the current pandemic intertwined within the subject. Given that Fading Light allows a ubiquitous dialogue to grow from the framed image, a subjective commonality in these mentioned works provide insight into how artists have engaged innovation strategies with teleconferencing to develop artwork made and commenting about the current pandemic. Whether it be Małpecki’s subversive pandemic variety show, the loneliness of Mandiberg’s Zoom call paintings or Wilson’s refilming of Black Death era paintings, all three artists use video call platforms as a contemporary art medium capable of social commentary during histo-trauma. These works also raise the possibility of interdisciplinary Metamodernist approaches to consider the implications of non-traditional mediums in offering socio-commentary during profoundly impactful times. It remains to be seen if contemporary video call platforms will become a frequented tool in contemporary art long after the COVID-19 pandemic is over. However, by these works and indeed, from the others to follow and not yet revealed, the current ossuary provides an opportunity for artists to respond to their own immediate surroundings to redefine existing boundaries in art and look to innovation in the methods they use. We are in a new era of art making, only now beginning to reveal itself. It may take years or even decades to better understand the magnitude of the significance that artists have contributed towards their own practices since the beginnings of the pandemic. This time of profound change only strengthens the need for contemporary art to preserve and enlighten humanity through the journey from crisis to hope. References Blade Runner. Dir. by Ridley Scott, Warner Brothers, 1982. “Coronavirus US Cases.” New York Times, 27 Mar. 2021. 28 Mar. 2021 <http://www.nytimes.com/interactive/2020/us/coronavirus-us-cases.html>. Defoe, Taylor. “‘It's Memorializing How Unmemorable It Is’: Artist Michael Mandiberg on Painting Melancholy Portraits on Zoom.” Artnet News 10 Nov. 2020. 19 Mar. 2021 <http://news.artnet.com/exhibitions/mandiberg-zoom-paintings-1922159>. De La Torre, Lucia. “Art in the Age of Zoom: Explore the Video Art Collage Unraveling the Complexities of the Digital Age.” The Culvert Journal, 5 May 2020. 19 Mar. 2021 <https://www.calvertjournal.com/articles/show/11788/online-performance-art-polish-artist-maria-malpecki-digital-age>. Goya, Francisco. Plaga Hospital. Private Collection. 1800. Małpecki, Maria. There Is No Such Thing as Internet. Vimeo, 2020. <http://vimeo.com/415998383>. Mandiberg, Michael. Uncle Bob 85th Birthday via Zoom 3:00-4:00PM, August 16, 2020 (#24). New York: Denny Dinin Gallery, 2020. “Pogo Bar: Maria Małpecki & Tomek Pawłowski Jarmołajew.” KW Institute for Contemporary Art, 7 May 2020. 19 Mar. 2021 <http://www.kw-berlin.de/en/maria-malpecki-tomek-pawlowski-jarmolajew/>. Sullivan, Eve. “Video Art during and after the Pandemic: 2020 Limestone Coast Video Art Festival.” Artlink, 2020. 19 Mar. 2021 <http://www.artlink.com.au/articles/4885/video-art-during-and-after-the-pandemic-2020-limes/>. Van Eyck, Jan. Arnolfini Portrait. Canberra: National Gallery, 1434. Wilson, Shaun. Fading Light. Bakers Road Entertainment, 2021. “The Zoom Paintings.” Denny Dimin Gallery, 12 Nov. 2020. <http://dennydimingallery.com/news/virtual_exhibition/zoom-paintings/>.

Abstract:

<p>La Academia Panameña de Medicina y Cirugía, se siente honrada, en resaltar la figura de uno de sus miembros distinguidos, el Académico Titular José Manuel Fábrega Sosa, MD, FACS, FSSO, APMC. Este distinguido cirujano, panameño, hizo sus estudios profesionales en la Universidad de Notre Dame, Notre Dame, Indiana donde se graduó con honores siendo miembro de la Sociedad de honor AlphaEpsilonDelta. Continuó sus estudios de medicina en la George Washington University School of Medicine, Washington, DC., donde obtuvo el grado de Medicina, graduándose también con honores siendo nombrado en la Sociedad de Honor de Medicina de los Estados Unidos, AlphaOmegaAlpha. Hizo su residencia en cirugía en el New York Hospital Cornell Medical Center y en Oncología Quirúrgica en el Memorial Sloan Kettering Cancer Center de Nueva York. Ha sido Certificado y Recertificado por el American Board of Surgery. Fellow y ExGobernador del American College of Surgeons y Ex Presidente del Capítulo de Panamá del American College of Surgeons. Además de Fellow de la Society of Surgical Oncology. A nivel local, entre otros es Ex Presidente de la Academia Panameña de Medicina y Cirugía. Y Profesor Extraordinario de Cirugía, de la Facultad de Medicina, de la Universidad de Panamá. Presidente y miembro fundador de la Asociación Panameña de Cirugía Oncológica (APCO). Aparte de tener licencia en la República de Panamá, tiene licencia del estado de California y de Washington DC en los Estados Unidos. Recientemente, ha sido merecedor a un reconocimiento, reservado para pocos cirujanos destacados, en el mundo, ser reconocido como Honorary Fellow del American College of Surgeons (Colegio Americano de Cirujanos), luego de 43 años de brindar sus conocimientos para el cuidado y bienestar de sus pacientes. Cabe destacar que al presente Solo hay 487 cirujanos en el mundo entero que han recibido tal distinción. El Colegio Americano de Cirujanos otorga este honor cada año, a cuatro o cinco candidatos que han prestado servicios humanitarios, especialmente en el campo de la ciencia médica. Es el tercer panameño en recibir este reconocimiento; el primero en ser distinguido fue el doctor Augusto S. Boyd, en 1923; luego el neurólogo Antonio González Revilla, en 1973. La universidad de Cornell, de donde egresó, lo declaró exalumno meritorio y es el único egresado en recibir esa distinción. En Panamá; la Asamblea Nacional lo reconoció como ciudadano ejemplar y meritorio y el presidente de la república lo condecoró con la Orden Manuel Amador Guerrero en el “Grado de Gran Cruz”. Honrar, honra, y la Academia Panameña de Medicina y Cirugía, y La Revista Médica de Panamá, se enorgullecen de presentar a este ilustre panameño y latinoamericano.</p><p>ABSTRACT</p><p>The Panamanian Academy of Medicine and Surgery is honored to highlight the figure of one of its distinguished members, the Tenured Academician José Manuel Fábrega Sosa, MD, FACS, FSSO, APMC. This distinguished Panamanian surgeon did his professional studies at the University of Notre Dame, Notre Dame, Indiana where he graduated with honors as a member of the AlphaEpsilonDelta Honor Society. He continued his medical studies at the George Washington University School of Medicine, Washington, DC., Where he obtained a degree in Medicine, also graduating with honors and being named in the American Honor Society of Medicine, AlphaOmegaAlpha. He did his residency in surgery at New York Hospital Cornell Medical Center and in Surgical Oncology at Memorial Sloan Kettering Cancer Center in New York. He has been Certified and Recertified by the American Board of Surgery. Fellow and Former Governor of the American College of Surgeons and Former President of the Panama Chapter of the American College of Surgeons. In addition to Fellow of the Society of Surgical Oncology. At the local level, among others, he is Former President of the Panamanian Academy of Medicine and Surgery. And Extraordinary Professor of Surgery, Faculty of Medicine, University of Panama.</p><p>President and founding member of the Panamanian Association of Oncological Surgery (APCO). Apart from being licensed in the Republic of Panama, it is licensed by the state of California and Washington DC in the United States. Recently, he has been worthy of a recognition, reserved for few outstanding surgeons, in the world, being recognized as Honorary Fellow of the American College of Surgeons (American College of Surgeons), after 43 years of providing his knowledge for the care and well-being of your patients. It should be noted that there are currently only 487 surgeons worldwide who have received such a distinction. The American College of Surgeons awards this honor each year to four or five candidates who have provided humanitarian services, especially in the field of medical science. He is the third Panamanian to receive this recognition; the first to be distinguished was Dr. Augusto S. Boyd, in 1923, then the neurologist Antonio González Revilla, in 1973. Cornell University, where he graduated, declared him a meritorious alumnus and is the only graduate to receive that distinction. In Panama, the National Assembly recognized him as an exemplary and meritorious citizen and the President of the Republic decorated him with the Manuel Amador Guerrero Order in the “Grand Cross Degree”. Honor, honor, and the Panamanian Academy of Medicine and Surgery, and La Revista Médica de Panama, are proud to present this illustrious Panamanian and Latin American.</p>

Abstract:

Introduction: Readmissions after adult cardiac surgery is an important clinical outcome. Despite case complexity, 30-day readmission after adult congenital heart surgery (CHS) has been under studied. Hypothesis: Readmissions after adult CHS are common. There exist identifiable risk factors for unplanned readmission. Methods: We obtained State Inpatient Databases for Washington, New York, Florida, and California 2009-2011 and selected admissions 18 - 49 years with ICD-9 CM codes indicating adult CHS. We defined readmission as any non-elective hospitalization for a given patient < 30 days of discharge from the index CHS admission. We examined patient demographic and clinical variables and defined complications using the Society of Thoracic Surgeons Congenital Heart complication short list. Case complexity was grouped using the Risk Adjustment for Congenital Heart Surgery-1 (RACHS-1) categories. High resource use (HRU) admissions were defined as those > 90 th percentile for total hospital charges. Multivariate analyses using generalized estimating equations were performed to identify adjusted risk factors for readmission. Results: Of 9860 admissions, there were 1675 readmissions (17%). Median length of stay for readmissions was 4 days and mortality rate 2.1%. Most common indications for readmission were cardiac (pericardial disease, atrial fibrillation, heart failure) and infectious (endocarditis, post-operative infection). On multivariable analysis, black race (adjusted odds ratio [AOR] 1.2 p<0.04), renal insufficiency (AOR 1.8 p<0.001), drug abuse (AOR 1.4 p=0.001), obesity (AOR 1.2 p=0.03), government-sponsored insurance (AOR 1.3 p<0.001), median income <$40,000 (AOR 1.3 p=0.001), index admissions with complication (AOR 1.1 p=0.04), RACHS-1 3 complexity (AOR 1.3 p=0.04), HRU (AOR 1.4 p=0.003), and emergent (AOR 1.5 p<0.001) were risk factors for readmission. Conclusions: One out of 6 adult CHS hospitalizations result in unplanned readmission. Lower socioeconomic status, black race, renal failure, obesity, drug abuse, HRU, emergent index admission, and complications are risk factors for subsequent unplanned 30-day readmission. These risk factors may serve as potential quality improvement targets to reduce readmissions.

Abstract:

Early into the COVID pandemic, epidemiologists and infectious disease experts warned that older adults were among those most vulnerable to the disease, as multiple studies from China, Italy, Washington State, and New York City showed that age greater than 65 significantly increased the risk of severe disease and/or death from the novel 2019 coronavirus. Centers for Disease Control data through June 2020 show that nearly 81% of deaths due to COVID-19 are of people 65 years of age and older. These breakdowns indicate that, primarily, persons with advanced age and most, often, those with multiple chronic conditions are those who have died. The effects of the virus led to public health measures aimed at reducing exposures of older people and other vulnerable populations. The disease was amplified in rehabilitation centers, skilled nursing facilities, assisted living centers, group homes, and other long-term care facilities serving a primarily geriatric population. Even as parts of the country are opening up, the death toll is still climbing and affecting the older adult population disproportionately. Duty to care, autonomy and self-determination, non-judgmental regard, justice, and futility are all significant ethical principles and constructs that have arisen in the intense and real-time application of healthcare as we continue to face the present global pandemic. We use an ethical lens to examine the medical response of the SARS-CoV-2 pandemic on the older adult population and explore if society is doing enough to protect older adults, or rather, engaging in and furthering collective and systematic elder abuse.

Abstract:

BASTARDYAll children born before matrimony, or so long after the death of the husband as to render it impossible that the child could be begotten by him, are bastards.– Cro. Jac. 451William Toone: The Magistrates Manual, 1817 (66)On 4 September 1832, the body of a newborn baby boy was found washed up on the shore at the port town of Fremantle, Western Australia. As the result of an inquest into the child’s suspicious death, a 20-year-old, unmarried woman named Mary Summerland was accused of concealing his birth. In October 2014, 25-year-old Irish backpacker Caroline Quinn faced court in Perth, Western Australia, over claims that she concealed the birth of her stillborn child after giving birth in the remote north west town of Halls Creek during May of the same year. Both women denied the existence of their children, both appear to have given birth to their “illegitimate” babies alone, and both women claimed that they did not know that they had ever been pregnant at all. In addition, both women hid the body of their dead child for several days while the people they lived with or were close to, did not appear to notice that the mother of the child had had a baby. In neither case did any person associated with either woman seek to look for the missing child after it had been born.Despite occurring 182 years apart, the striking similarities between these cases could lead to the assumption that it is almost as if there were a written script of behaviour that would explain the actions of both young women. Close examination of the laws surrounding child murder, infanticide and concealment of birth reveals evidence of similar behaviours being enacted by women as far back as the 1600s (and earlier), and all are shaped in response to the legal frameworks that prosecuted women who gave birth outside of marriage.This article traces the history of child murder law from its formation in England in the 1600s and explores how early moral assumptions concerning unmarried mothers echoed through the lived experiences of women who killed their illegitimate babies in colonial Western Australia, and continue to resonate in the treatment of, and legal response to, women accused of similar crimes in the present day. The Unlicensed ChildThe unlicensed child is a term coined by Swain and Howe to more accurately define the social matrix faced by single women and their children in Australia. The term seeks to emphasise the repressive and controlling religious, legal and social pressures that acted on Australian women who had children outside marriage until the mid-1970s (xxi, 1, 92, 94). For the purposes of this article, I extend Swain and Howe’s term the unlicensed child to coin the term the unlicensed mother. Following on from Swain and Howe’s definition, if the children of unmarried mothers did not have a license to be born, it is essential to acknowledge that their mothers did not have a license to give birth. Women who had children without social and legal sanction gave birth within a society that did not allocate them “permission” to be mothers, something that the corporeality of pregnancy made it impossible for them not to be. Their own bodies—and the bodies of the babies growing inside them—betrayed them. Unlicensed mothers were punished socially, religiously, legally and financially, and their children were considered sinful and inferior to children who had married parents simply because they had been born (Scheper-Hughes 410). This unspoken lack of authorisation to experience the unavoidably innate physicality of pregnancy, birth and motherhood, in turn implies that, until recently unmarried mothers did not have license to be mothers. Two MothersAll that remains of the “case” of Mary Summerland is a file archived at the State Records Office of Western Australia under the title CONS 3472, Item 10: Rex V Mary Summerland. Yet revealed within those sparse documents is a story echoed by the events surrounding Caroline Quinn nearly two hundred years later. In September 1832, Mary Summerland was an unmarried domestic servant living and working in Fremantle when the body of a baby was found lying on a beach very close to the settlement. Western Australia had only been colonized by the British in 1829. The discovery of the body of an infant in such a tiny village (colonial Fremantle had a population of only 436 women and girls out of 1341 non-Aboriginal emigrants) (Gardiner) set in motion an inquest that resulted in Mary Summerland being investigated over the suspicious death of the child.The records suggest that Mary may have given birth, apparently alone, over a week prior to the corpse of the baby being discovered, yet no one in Fremantle, including her employer and her family, appeared to have noticed that Mary might have been pregnant, or that she had given birth to a child. When Mary Summerland was eventually accused of giving birth to the baby, she strongly denied that she had ever been pregnant, and denied being the mother of the child. It is not known how her infant ended up being disposed of in the ocean. It is also not known if Mary was eventually charged with concealment or child murder, but in either scenario, the case against her was dismissed as “no true bill” when she faced her trial. The details publically available on the case of Caroline Quinn are also sparse. Even the sex of her child has not been revealed in any of the media coverage of the event. Yet examination of the limited details available on her charge of “concealment of birth” reveal similarities between her behaviours and those of Mary Summerland.In May 2014 Caroline Quinn had been “travelling with friends in the Kimberly region of Western Australia” (Lee), and, just as Mary did, Caroline claims she “did not realise that she was pregnant” when she went into labour (Independent.ie). She appears, like Mary Summerland, to have given birth alone, and also like Mary, when her child died due to unexplained circ*mstances she hid the corpse for several days. Also echoing Mary’s story, no person in the sparsely populated Hall’s Creek community (the town has a populace of 1,211) or any friends in Caroline’s circle of acquaintances appears to have noticed her pregnancy, nor did they realise that she had given birth to a baby until the body of the child was discovered hidden in a hotel room several days after her or his birth. The media records are unclear as to whether Caroline revealed her condition to her friends or whether they “discovered” the body without her assistance. The case was not brought to the attention of authorities until Caroline’s friends took her to receive medical attention at the local hospital and staff there notified the police.Media coverage of the death of Caroline Quinn’s baby suggests her child was stillborn or died soon after birth. As of 13 August 2014 Caroline was granted leave by the Chief Magistrate to return home to Ireland while she awaited her trial, as “without trivialising the matter, nothing more serious was alleged than the concealing of the birth” (Collins, "Irish Woman"). Caroline Quinn was not required to return to Australia to appear at her trial and when the case was presented at the Perth Magistrates Court on Thursday 2 October, all charges against her were dropped as the prosecutor felt “it was not in the public interest” to proceed with legal action (Collins, "Case").Statutory MarginalisationTo understand the similarities between the behaviours of, and legal and medical response to, Mary Summerland and Caroline Quinn, it is important to situate the deaths of their children within the wider context of child murder, concealment of birth and “bastardy” law. Tracing the development of these methods of law-making clarifies the parallels between much of the child murder, infanticide and concealment of birth narrative that has occurred in Western Australia since non-Aboriginal settlement.Despite the isolated nature of Western Australia, the nearly 400 years since the law was formed in England, and the extremely remote rural locations where both these women lived and worked, their stories are remarkably alike. It is almost as if there were a written script and each member of the cast knew what role to play: both Mary and Caroline knew to hide their pregnancies, to deny the overwhelmingly traumatic experience of giving birth alone, and to conceal the corpses of their babies. The fathers of their children appear to have cut off any connection to the women or their child. The family, friends, or employers of the parents of the dead babies knew to pretend that they did not know that the mother was pregnant or who the father was. The police and medical officers knew to charge these women and to collect evidence that could be used to simultaneously meet the needs of the both prosecution and the defence when the cases were brought to trial.In reference to Mary Summerland’s case, in colonial Western Australia when a woman gave birth to an infant who died under suspicious circ*mstances, she could be prosecuted with two charges: “child murder” and/or “concealment of birth”. It is suggestive that Mary may have been charged with both. The laws regarding these two offences were focused almost exclusively on the deaths of unlicensed children and were so deeply interconnected they are difficult to untangle. For Probyn, shame pierces the centre of who we think we are, “what makes it remarkable is that it reveals with precision our values, hopes and aspirations, beyond the generalities of good manners and cultured norms” (x). Dipping into the streams of legal and medical discourse that flow back to the seventeenth century highlights the pervasiveness of discourses marginalising single women and their children. This situates Mary Summerland and Caroline Quinn within a ‘burden on society’ narrative of guilt, blame and shame that has been in circulation for over 500 years, and continues to resonate in the present (Coull).An Act to Prevent the Destroying and Murthering of Bastard ChildrenIn England prior to the 17th century, penalties for extramarital sex, the birth and/or maintenance of unlicensed children or for committing child murder were expressed through church courts (Damme 2-6; Rapaport 548; Butler 61; Hoffer and Hull 3-4). Discussion of how the punishment of child murder left the religious sphere and came to be regulated by secular laws that were focused exclusively on the unlicensed mother points to two main arguments: firstly, the patriarchal response to unlicensed (particularly female) sexuality; and secondly, a moral panic regarding a perceived rise in unlicensed pregnancies in women of the lower classes, and the resulting financial burden placed on local parishes to support unwanted, unlicensed children (Rapaport 532, 48-52; McMahon XVII, 126-29; Osborne 49; Meyer 3-8 of 14). In many respects, as Meyer suggests, “the legal system subtly encouraged neonaticide through its nearly universally negative treatment of bastard children” (240).The first of these “personal control laws” (Hoffer and Hull 13) was the Old Poor Law created by Henry VIII in 1533, and put in place to regulate all members of English society who needed to rely on the financial assistance of the parish to survive. Prior to 1533, “by custom the children of the rich depended on their relations, while the ‘fatherless poor’ relied on the charity of the monastic institutions and the municipalities” (Teichman 60-61). Its implementation marks the historical point where the state began to take responsibility for maintenance of the poor away from the church by holding communities responsible for “the problem of destitution” (Teichman 60-61; Meyer 243).The establishment of the poor law system of relief created a hierarchy of poverty in which some poor people, such as those suffering from sickness or those who were old, were seen as worthy of receiving support, while others, who were destitute as a result of “debauchery” or other self-inflicted means were seen as undeserving and sent to a house of correction or common gaol. Underprivileged, unlicensed mothers and their children were seen to be part of the category of recipients unfit for help (Jackson 31). Burdens on SocietyIt was in response to the narrative of poor unlicensed women and their children being undeserving fiscal burdens on law abiding, financially stretched community members that in 1576 a law targeted specifically at holding genetic parents responsible for the financial maintenance of unlicensed children entered the secular courts for the first time. Called the Elizabethan Poor Law it was enacted in response to the concerns of local parishes who felt that, due to the expenses exacted by the poor laws, they were being burdened with the care of a greatly increased number of unlicensed children (Jackson 30; Meyer 5-6; Teichman 61). While the 1576 legislation prosecuted both parents of unlicensed children, McMahon interprets the law as being created in response to a blend of moral and economic forces, undergirded by a deep, collective fear of illegitimacy (McMahon 128). By the 1570s “unwed mothers were routinely whipped and sent to prison” (Meyer 242) and “guardians of the poor” could force unlicensed mothers to wear a “badge” (Teichman 63). Yet surprisingly, while parishes felt that numbers of unlicensed children were increasing, no concomitant rise was actually recorded (McMahon 128).The most damning evidence of the failure of this law, was the surging incidence of infanticide following its implementation (Rapaport 548-49; Hoffer and Hull 11-13). After 1576 the number of women prosecuted for infanticide increased by 225 percent. Convictions resulting in unlicensed mothers being executed also rose (Meyer 246; Hoffer and Hull 8, 18).Infanticide IncreasesBy 1624 the level of infanticide in local communities was deemed to be so great An Act to Prevent the Destroying and Murthering of Bastard Children was created. The Act made child murder a “sex-specific crime”, focused exclusively on the unlicensed mother, who if found guilty of the offence was punished by death. Probyn suggests that “shame is intimately social” (77) and indeed, the wording of An Act to Prevent highlights the remarkably similar behaviours enacted by single women desperate to avoid the shame and criminal implication linked to the social position of unlicensed mother: Whereas many lewd Women that have been delivered of Bastard Children, to avoyd their shame and to escape punishment [my italics], doe secretlie bury, or conceale the Death of their Children, and after if the child be found dead the said Women doe alleadge that the said Children were borne dead;…For the preventing therefore of this great Mischiefe…if any Woman…be delivered of any issue of the Body, Male or Female, which being born alive, should by the Lawes of this Realm be a bastard, and that she endeavour privatlie either by drowning or secret burying thereof, or any other way, either by herselfe of the procuring of others, soe to conceale the Death thereof, as that it may not come to light, whether it be borne alive or not, but be concealed, in every such Case the Mother so offending shall suffer Death… (Davies 214; O'Donovan 259; Law Reform Commission of Western Australia 104; Osborne 49; Rose 1-2; Rapaport 548). An Act to Prevent also “contained an extraordinary provision which was a reversion of the ordinary common law presumption of dead birth” (Davies 214), removing the burden of proof from the prosecution and placing it on the defence (Francus 133; McMahon 128; Meyer 2 of 14). The implication being that if the dead body of a newborn, unlicensed baby was found hidden, it was automatically assumed that the child had been murdered by their mother (Law Reform Commission of Western Australia 104; Osborne 49; Rapaport 549-50; Francus 133). This made the Act unusual in that “the offence involved was the concealment of death rather than the death itself” (O'Donovan 259). The only way an unlicensed mother charged with child murder was able to avoid capital punishment was to produce at least one witness to give evidence that the child was “borne dead” (Law Reform Commission of Western Australia 104; Meyer 238; McMahon 126-27).Remarkable SimilaritiesClearly, the objective of An Act to Prevent was not simply to preserve infant life. It is suggestive that it was enacted in response to women wishing to avoid the legal, social, corporal and religious punishment highlighted by the implementation of the poor law legislation enacted throughout earlier centuries. It is also suggestive that these pressures were so powerful that threat of death if found guilty of killing their neonate baby was not enough to deter women from concealing their unlicensed pregnancies and committing child murder. Strikingly analogous to the behaviours of Mary Summerland in 19th century colonial Western Australia, and Caroline Quinn in 2014, the self-preservation implicit in the “strategies of secrecy” (Gowing 87) surrounding unlicensed birth and child murder often left the mother of a dead baby as the only witness to her baby’s death (McMahon xvii 49-50).An Act to Prevent set in motion the legislation that was eventually used to prosecute Mary Summerland in colonial Western Australia (Jackson 7, Davies, 213) and remnants of it still linger in the present where they have been incorporated into the ‘concealment of birth law’ that prosecuted Caroline Quinn (Legal Online TLA [10.1.182]).Changing the ‘Script’Shame runs like a viral code through the centuries to resonate within the legal response to women who committed infanticide in colonial Western Australia. It continues on through the behaviours of, and legal responses to, the story of Caroline Quinn and her child. As Probyn observes, “shame reminds us about the promises we keep to ourselves” in turn revealing our desire for belonging and elements of our deepest fears (p. x). While Caroline may live in a society that no longer outwardly condemns women who give birth outside of marriage, it is fascinating that the suite of behaviours manifested in response to her pregnancy and the birth of her child—by herself, her friends, and the wider community—can be linked to the narratives surrounding the formation of “child murder” and “concealment” law nearly 400 years earlier. Caroline’s narrative also encompasses similar behaviours enacted by Mary Summerland in 1832, in particular that Caroline knew to say that her child was “born dead” and that she had merely concealed her or his body—nothing more. This behaviour appears to have secured the release of both women as although both Mary and Caroline faced criminal investigation, neither was convicted of any crime. Yet, neither of these women or their small communities were alone in their responses. My research has uncovered 55 cases linked to child murder in Western Australia and the people involved in all of these incidences share unusually similar behaviours (Gardiner). Perhaps, it is only through the wider community becoming aware of the resonance of child murder law echoing through the centuries, that certain women who are pregnant with unwanted children will be able to write a different script for themselves, and their “unlicensed” children. ReferencesButler, Sara, M. "A Case of Indifference? Child Murder in Later Medieval England." Journal of Women's History 19.4 (2007): 59-82. Collins, Padraig. "Case against Irish Woman for Concealing Birth Dropped." The Irish Times 2 Oct. 2014. ---. "Irish Woman Held for Hiding Birth in Australia Allowed Return Home." The Irish Times 13 Aug. 2014. Coull, Kim. “The Womb Artist – A Novel: Translating Late Discovery Adoptee Pre-Verbal Trauma into Narrative”. Dissertation. Perth, WA: Edith Cowan University, 2014.Damme, Catherine. "Infanticide: The Worth of an Infant under Law." Medical History 22.1 (1978): 1-24. Davies, D.S. "Child-Killing in English Law." The Modern Law Review 1.3 (1937): 203-23. Dickinson, J.R., and J.A. Sharpe. "Infanticide in Early Modern England: The Court of Great Sessions at Chester, 1650-1800." Infanticide: Historical Perspectives on Child Murder and Concealment, 1550-2000. Ed. Mark Jackson. Hants: Ashgate, 2002. 35-51.Francus, Marilyn. "Monstrous Mothers, Monstrous Societies: Infanticide and the Rule of Law in Restoration and Eighteenth-Century England." Eighteenth-Century Life 21.2 (1997): 133-56. Gardiner, Amanda. "Sex, Death and Desperation: Infanticide, Neonaticide and Concealment of Birth in Colonial Western Australia." Dissertation. Perth, WA: Edith Cowan University, 2014.Gowing, Laura. "Secret Births and Infanticide in Seventeenth-Century England." Past & Present 156 (1997): 87-115. Hoffer, Peter C., and N.E.H. Hull. Murdering Mothers: Infanticide in England and New England 1558-1803. New York: New York University Press, 1984. Independent.ie. "Irish Woman Facing Up to Two Years in Jail for Concealing Death of Her Baby in Australia." 8 Aug. 2014. Law Reform Commission of Western Australia. "Chapter 3: Manslaughter and Other Homicide Offences." Review of the Law of Homicide: Final Report. Perth: Law Reform Commission of Western Australia, 2007. 85-117.Lee, Sally. "Irish Backpacker Charged over the Death of a Baby She Gave Birth to While Travelling in the Australia [sic] Outback." Daily Mail 8 Aug. 2014. Legal Online. "The Laws of Australia." Thomson Reuters 2010. McMahon, Vanessa. Murder in Shakespeare's England. London: Hambledon and London, 2004. Meyer, Jon'a. "Unintended Consequences for the Youngest Victims: The Role of Law in Encouraging Neonaticide from the Seventeenth to Nineteenth Centuries." Criminal Justice Studies 18.3 (2005): 237-54. O'Donovan, K. "The Medicalisation of Infanticide." Criminal Law Review (May 1984): 259-64. Osborne, Judith A. "The Crime of Infanticide: Throwing Out the Baby with the Bathwater." Canadian Journal of Family Law 6 (1987): 47-59. Rapaport, Elizabeth. "Mad Women and Desperate Girls: Infanticide and Child Murder in Law and Myth." Fordham Urban Law Journal 33.2 (2006): 527-69.Rose, Lionel. The Massacre of the Innocents: Infanticide in Britain, 1800-1939. London: Routledge & Kegan, 1986. Scheper-Hughes, Nancy. Death without Weeping: The Violence of Everyday Life in Brazil. Los Angeles: University of California Press, 1992. Swain, Shurlee, and Renate Howe. Single Mothers and Their Children: Disposal, Punishment and Survival in Australia. Cambridge: Cambridge University Press, 1995. Teichman, Jenny. Illegitimacy: An Examination of Bastardy. Oxford: Cornell University Press, 1982. Toone, William. The Magistrate's Manual: Or a Summary of the Duties and Powers of a Justice of the Peace. 2nd ed. London: Joseph Butterworth and Son, 1817.

Abstract:

Objective: Readmission after ischemic stroke presents immense social and financial burden on patients, families and society at large. Post-stroke follow-up, a way to prevent readmission, has generally been focused on patients discharged to home with limited attention to those discharged to other facilities. This study aimed to examine 30-day readmission likelihood among patients of different discharge disposition. Methods: We studied patients who were hospitalized for ischemic stroke in states of Wisconsin, Iowa, Arkansas, and New York in 2016-2017 using the Healthcare Cost and Utilization Project State Inpatient Database. Generalized estimating equation was used to study the association of discharge disposition with 30-day all-cause readmission, after adjusting for patient sociodemographics, 23 comorbidities, hospital characteristics, in-hospital complications, and proxies for stroke severity, accounting for in-hospital clustering. Results: Among 52,301 patients hospitalized for ischemic stroke, 45% were discharged to home without home-health-care, 19% to home with home-health-care, 33.5% to rehabilitation and skilled nursing facilities, 1.5% to short-term hospital, and 0.93% left against medical advice. Patients discharged to home accounted for 34.7% of total 30-day readmissions while discharged to rehabilitation and skilled nursing facilities accounted for 40.6% of total 30-day readmissions. Compared to the patients discharged to home without home-health-care which had the lowest 30-day all-cause readmission rate (8.4%), patients with other dispositions were at higher likelihood of readmission: home with home-health-care (11.3%, adjusted odds ratio [OR], 1.18; 95% confidence interval [CI], 1.08-1.28); rehabilitation and skilled nursing facilities (13.2%; adjusted OR, 1.33; 95% CI, 1.22-1.46); short-term hospitals (23.7%; adjusted OR, 3.09; 95% CI, 2.44-3.93); and left against medical advice (18.6%; adjusted OR, 2.2; 95% CI, 1.75-2.83). Conclusion: Patients who are discharged to rehabilitation and skilled nursing facilities after ischemic stroke are at high likelihood of 30-day readmission and should be a focus of discharge planning to prevent events that lead to readmission.

Abstract:

RECIPIENTS of The Endocrine Society’s Laureate Awards are selected annually by the Awards Committee. The Laureate Awards are presented to endocrinologists, members or nonmembers, from anywhere in the world. Each recipient is presented with an award certificate and is honored at the Society’s annual Awards Dinner in June. Nominations may be submitted by Society members only. A complete listing of all past awardees is available on the Society’s web site, www.endo-society.org. Nominations must be submitted by early April on the appropriate nomination form. The nomination form may be obtained by visiting the Society web site or by contacting The Endocrine Society. Fred Conrad Koch Award In 1957 a substantial legacy was bequeathed to the Society by the late Elizabeth Koch for the purpose of establishing the Fred Conrad Koch Memorial Fund in memory of her late husband, Distinguished Service Professor of Physiological Chemistry at the University of Chicago, and pioneer in the isolation of the androgens. This is the highest honor of the Society and is presented with the Koch Medal of The Endocrine Society, as well as a $25,000 honorarium. The award is given annually for exceptional contributions to endocrinology. The recipients of this award for the past ten years were: Ronald M. Evans and Michael G. Rosenfeld, 1999; C. Ronald Kahn, 2000; Robert J. Lefkowitz, 2001; Jan-Åke Gustafsson, 2002; Maria I. New, 2003; Patricia K. Donahoe, 2004; William F. Crowley, Jr., 2005; Gerald M. Reaven, 2006; John D. Baxter, 2007; and P. Reed Larsen, 2008. Ernst Oppenheimer Memorial Award The Ernst Oppenheimer Memorial Award was first presented by The Endocrine Society in 1944 and is the premier award to a young investigator in recognition of meritorious accomplishments in the field of basic or clinical endocrinology. The recipient must not have reached age 45 by July 1 of the year in which the award is presented. The award includes a $3,000 honorarium. The recipients of this award for the past five years were: Ursula B. Kaiser, 2004; Steven A. Kliewer, 2005; Charis Eng, 2006; Rohit N. Kulkarni, 2007; and Joel K. Elmquist and Randy J. Seeley, 2008. Robert H. Williams Distinguished Leadership Award The Robert H. Williams Distinguished Leadership Award was established by Dr. Robert H. Williams in 1970. The award is presented annually in recognition of outstanding leadership in endocrinology as exemplified by the recipient’s contributions and those of his/her trainees and associates to teaching, research, and administration. Distinguished leadership in endocrinology and metabolism may be manifest in a variety of ways and activities (international, national, and local). This award includes a $5,000 honorarium. The recipients of this award for the past five years were: David M. de Kretser, 2004; Gordon H. Williams, 2005; Richard J. Santen, 2006; Lewis E. Braverman, 2007; and Ron G. Rosenfeld, 2008. Edwin B. Astwood Award Lecture The Edwin B. Astwood Award Lecture is awarded for outstanding research in endocrinology. The recipient presents a plenary lecture at the annual meeting to honor the late Dr. Edwin B. Astwood of Boston. The award includes a $2,000 honorarium. The recipients of this award for the past five years were: Paolo Sassone-Corsi, 2004; Willa A. Hsueh, 2005; Mitchell A. Lazar, 2006; Lawrence C. Chan, 2007; and John A. Cidlowski, 2008. Clinical Investigator Award Lecture The Clinical Investigator Award Lecture is presented to an internationally recognized clinical investigator who has made major contributions to clinical research related to the pathogenesis, pathophysiology, and therapy of endocrine disease. The recipient presents a plenary lecture at the annual meeting and receives a $3,500 honorarium. The recipients of this award for the past five years were: Shlomo Melmed, 2004; Paul M. Stewart, 2005; Walter L. Miller, 2006; Stephen O’Rahilly, 2007; and John C. Marshall, 2008. Gerald D. Aurbach Award Lecture This award was first presented in 1993 in honor of the late Dr. Gerald D. Aurbach, who served as president of The Endocrine Society from 1989–1990. This award is presented for outstanding contributions to research in endocrinology. Dr. Aurbach received his B.A. and M.D. from the University of Virginia. After his training in endocrinology at Tufts University School of Medicine, he joined the Public Health Service and the National Institutes of Health in 1959 and had served as chief of the Metabolic Disease Branch, National Institute of Diabetes, Digestive and Kidney Diseases since 1973. He was the first to isolate PTH and played a key role in discovering the hormone’s biochemical mechanism of action in bone disease and calcium metabolism. The recipient presents a plenary lecture at the annual meeting and receives an honorarium of $1,000. The recipients of this award for the past five years were: David J. Mangelsdorf, 2004; David R. Clemmons, 2005; Paul A. Kelly, 2006; Eve Van Cauter, 2007; and Andrew F. Stewart, 2008. Sidney H. Ingbar Distinguished Service Award The Sidney H. Ingbar Distinguished Service Award is named in honor of the 65th President of The Endocrine Society and presented in recognition of distinguished service in the field of endocrinology. The award includes a $2,000 honorarium. The recipients of this award for the past five years were: Margaret A. Shupnik, 2004; P. Michael Conn, 2005; Robert D. Utiger, 2006; Robert A. Vigersky, 2007; and Lisa H. Fish, 2008. Roy O. Greep Award Lecture This award was first presented in 1999 in memory of Dr. Roy O. Greep, President of The Endocrine Society in 1965–1966, Editor-in-Chief of Endocrinology, and President of the Laurentian Hormone Conference. He retired in 1974 as director emeritus of the Laboratory of Human Reproductive Biology at Harvard’s Medical School and as the John Rock Professor Emeritus of Population Studies at Harvard’s School of Public Health. Dr. Greep received international recognition as a pioneer in the field of endocrinology, receiving the Society’s highest honor, the Fred Conrad Koch Award, in 1971. Dr. Greep will be remembered by his colleagues as a remarkable investigator, a loyal friend, and a patient and devoted teacher. The recipient of this award presents a plenary lecture at the annual meeting and receives a $1,000 honorarium. The recipients of this award for the past five years were: Phyllis M. Wise, 2004; Evan R. Simpson, 2005; Benita S. Katzenellenbogen and John Katzenellenbogen, 2006; Sally A. Camper, 2007; and Nancy Lynn Weigel, 2008. Distinguished Educator Award This award was established by the Society in 1998 to recognize exceptional achievement of educators in the field of endocrinology and metabolism. The award includes an honorarium of $3,000. The recipients of this award for the past five years were: E. Brad Thompson, 2004; Ernest L. Mazzaferri, 2005; Gilbert H. Daniels, 2006; Kenneth L. Becker, 2007; and Ronald S. Swerdloff, 2008. Distinguished Physician Award The Distinguished Physician Award was established by the Society in 1998 to honor physicians who have made outstanding contributions to the practice of endocrinology. The award includes an honorarium of $3,000. The recipients of this award for the past five years were: Edward S. Horton, 2004; Robert M. Carey, 2005; Glenn D. Braunstein, 2006; Bernardo L. Wajchenberg, 2007; and F. John Service, 2008. Richard E. Weitzman Memorial Award This award was established in 1982 to honor outstanding research achievements in the field of endocrinology and metabolism by a young investigator. The award was established in memory of the late Dr. Richard E. Weitzman. Born in 1943, Dr. Weitzman was educated at Cornell University and the State University of New York Upstate Medical Center (Syracuse). He received training in endocrinology at the University of Virginia and the Harbor-UCLA School of Medicine, rising to the rank of Associate Professor, and began a productive career studying neurohypophyseal hormone and cardiovascular-endocrine physiology. In honor of Dr. Weitzman, an anonymous donor has provided funds for an annual award of $1,000 to be given to an exceptionally promising young investigator who has not reached the age of 40 before July 1 of the year in which the award is presented. The award is based on the contributions and achievements of the nominee’s independent scholarship performed after completion of training and shall be based on the entire body of these contributions, rather than a single work. The recipients of this award for the past five years were: Tso-Pang Yao, 2004; Peter Tontonoz, 2005; Fabio Broglio, 2006; W. Lee Kraus, 2007; and Tannishtha Reya, 2008. The Endocrine Society and Pfizer, Inc. International Award for Excellence in Published Clinical Research in The Journal of Clinical Endocrinology & Metabolism In 1998, “The Endocrine Society and Pfizer, Inc. International Award for Excellence in Published Clinical Research in The Journal of Clinical Endocrinology & Metabolism (JCE&M)” was established to encourage, recognize, and reward excellence in clinical research published in JCE&M. There are no restrictions with respect to professional affiliation or geographic location. Each year, a jury selects the four best clinical research papers published in JCE&M in a volume year. Each finalist paper receives a $10,000 award. In addition to the monetary prize, the award includes coach airline travel, meeting registration, hotel for one night, and one day’s per diem for one author on each paper to attend the Society’s annual meeting in June. The announcement of the winners is made in April each year with the awards presented at The Endocrine Society annual meeting in June. Papers accepted for publication but not yet published are not eligible until the year that they are actually published.

Abstract:

Objective: Readmission after ischemic stroke presents immense social and financial burden on the patient, family and society. The impact of social determinants of health on post-stroke readmission have not been well studied. This study aimed to examine association of patient social determinants with 30-day readmission risk after ischemic stroke. Methods: We examined patients who were hospitalized for acute ischemic stroke (ICD-9 codes 433.1, 434, and 436) in the state of Florida and New York from February 2012 to November 2013, with a 30-day run-in time and 30-day follow up time. Data were obtained from the State Inpatient Database which was then linked with Census data on social determinants at zip code level. Multivariate logistic regression models were generated to study the association of patient factors with 30-day readmission, after adjusting for patient characteristics, in-hospital infection, hemiplegia, and 16 comorbidities. All statistical analyses were conducted using SAS Version 9.4 software (SAS Institute). Results: A total of 127,290 patients were included in the study. The overall 30-day readmission rate was 23%. The 30-day readmission rates differed by race, insurance but not age, sex or household income at zip code level. The 30-day readmission rate was higher amongst black (27%) and Hispanics (25%), and lower in Native American (17%) and White (22%). Comparable to older age groups, patients who suffered a stroke at young age (<50 years old) had 23% readmission rates at 30 days. In the multivariate logistic regression model, age was not a risk factor for readmission [adjusted odds ratio (OR) 1.0, 95% confidence interval (CI) 1.0-1.0]. Compared to white, black race had higher risk of 30-day readmission (OR1.2, 95% CI 1.1-1.2), as well as Hispanic race (OR1.1, 95% CI 1.1-1.2). Compared to Medicare insurance, patient on Medicaid had higher risk of 30-day readmission (OR 1.1, 95% CI 1.1-1.2). Self-pay patients had lower risk of readmission (OR 0.6, 95% CI 0.5-0.7). Conclusion: Race and medical insurance, not age, sex, or household income, has significant influence in30-day readmission risk after ischemic stroke. This will allow further targeted intervention for readmission reduction.

Abstract:

Prescription opioid pain medication overuse, misuse and abuse has been a significant contributing factor in the opioid epidemic. The rising death rates from opioid overdose has caused healthcare practitioners and researchers to work on optimizing pain therapy and limiting the prescriptions for pain medications. The state of New York has implemented a prescription drug monitoring program(PDMP), amended public health law to limit the prescription of opioids for acute pain and utilized the resources of the state and county health departments to help in curbing this epidemic. The recent publication of guidelines for prescription opioids from CDC [2] and ASIPP (American Society of Interventional pain practitioners) [4] have independently reviewed literature and found good evidence of limiting opioid prescription for acute and chronic non cancer pain.MethodClinical Decision Support Systems (CDSS) have been developed over the last decade to help in the work flow of healthcare providers since advanced technology is increasing the complexity of electronic health records systems. There are several systematics reviews on the effectivity and utility of CDSSs. The common consensus seems to be that commercially and locally developed CDSS are effective in improving patient measures while actual workload improvement and efficient cost cutting measure are not significantly improved by CDSS. Patient provider involvement in developing CDSS is a determinant of its success and utilization rates. In this light, a plug and play form of CDSS which is independent of the vendors of Electronic Health Records and can be implemented from an external platform through secure channels would be more effective.The Health Level Seven’s (HL7) open licensed interoperability standard called Fast Health Interoperability Resources (FHIR) has a platform, Substitutable Medical Applications and Reusable Technologies (SMART) for CDSS app development by a third party. (Mandl and Kohane) [13] We adopted these open source standard to develop an app for proper implementation of the recently published guidelines for management of pain with opioid pain medications.The goal for this CDSS tool would be to achieve proper monitoring of prescription drugs, patients’ medication list and potential interactive medications, surveillance for abuse/ misuse, patient involvement in alternative therapy, reporting problems and obtaining adequate pain control.

Abstract:

Introduction The highly contagious COVID-19 virus has presented particularly difficult public policy challenges. The relatively late emergence of an effective treatments and vaccines, the structural stresses on health care systems, the lockdowns and the economic dislocations, the evident structural inequalities in effected societies, as well as the difficulty of prevention have tested social and political cohesion. Moreover, the intrusive nature of many prophylactic measures have led to individual liberty and human rights concerns. As noted by the Victorian (Australia) Ombudsman Report on the COVID-19 lockdown in Melbourne, we may be tempted, during a crisis, to view human rights as expendable in the pursuit of saving human lives. This thinking can lead to dangerous territory. It is not unlawful to curtail fundamental rights and freedoms when there are compelling reasons for doing so; human rights are inherently and inseparably a consideration of human lives. (5) These difficulties have raised issues about the importance of social or community capital in fighting the pandemic. This article discusses the impacts of social and community capital and other factors on the governmental efforts to combat the spread of infectious disease through the maintenance of social distancing and household ‘bubbles’. It argues that the beneficial effects of social and community capital towards fighting the pandemic, such as mutual respect and empathy, which underpins such public health measures as social distancing, the use of personal protective equipment, and lockdowns in the USA, have been undermined as preventive measures because they have been transmogrified to become a salient aspect of the “culture wars” (Peters). In contrast, states that have relatively lower social capital such a China have been able to more effectively arrest transmission of the disease because the government was been able to generate and personify a nationalist response to the virus and thus generate a more robust social consensus regarding the efforts to combat the disease. Social Capital and Culture Wars The response to COVID-19 required individuals, families, communities, and other types of groups to refrain from extensive interaction – to stay in their bubble. In these situations, especially given the asymptomatic nature of many COVID-19 infections and the serious imposition lockdowns and social distancing and isolation, the temptation for individuals to breach public health rules in high. From the perspective of policymakers, the response to fighting COVID-19 is a collective action problem. In studying collective action problems, scholars have paid much attention on the role of social and community capital (Ostrom and Ahn 17-35). Ostrom and Ahn comment that social capital “provides a synthesizing approach to how cultural, social, and institutional aspects of communities of various sizes jointly affect their capacity of dealing with collective-action problems” (24). Social capital is regarded as an evolving social type of cultural trait (f*ckuyama; Guiso et al.). Adger argues that social capital “captures the nature of social relations” and “provides an explanation for how individuals use their relationships to other actors in societies for their own and for the collective good” (387). The most frequently used definition of social capital is the one proffered by Putnam who regards it as “features of social organization, such as networks, norms and social trust that facilitate coordination and cooperation for mutual benefit” (Putnam, “Bowling Alone” 65). All these studies suggest that social and community capital has at least two elements: “objective associations” and subjective ties among individuals. Objective associations, or social networks, refer to both formal and informal associations that are formed and engaged in on a voluntary basis by individuals and social groups. Subjective ties or norms, on the other hand, primarily stand for trust and reciprocity (Paxton). High levels of social capital have generally been associated with democratic politics and civil societies whose institutional performance benefits from the coordinated actions and civic culture that has been facilitated by high levels of social capital (Putnam, Democracy 167-9). Alternatively, a “good and fair” state and impartial institutions are important factors in generating and preserving high levels of social capital (Offe 42-87). Yet social capital is not limited to democratic civil societies and research is mixed on whether rising social capital manifests itself in a more vigorous civil society that in turn leads to democratising impulses. Castillo argues that various trust levels for institutions that reinforce submission, hierarchy, and cultural conservatism can be high in authoritarian governments, indicating that high levels of social capital do not necessarily lead to democratic civic societies (Castillo et al.). Roßteutscher concludes after a survey of social capita indicators in authoritarian states that social capital has little effect of democratisation and may in fact reinforce authoritarian rule: in nondemocratic contexts, however, it appears to throw a spanner in the works of democratization. Trust increases the stability of nondemocratic leaderships by generating popular support, by suppressing regime threatening forms of protest activity, and by nourishing undemocratic ideals concerning governance (752). In China, there has been ongoing debate concerning the presence of civil society and the level of social capital found across Chinese society. If one defines civil society as an intermediate associational realm between the state and the family, populated by autonomous organisations which are separate from the state that are formed voluntarily by members of society to protect or extend their interests or values, it is arguable that the PRC had a significant civil society or social capital in the first few decades after its establishment (White). However, most scholars agree that nascent civil society as well as a more salient social and community capital has emerged in China’s reform era. This was evident after the 2008 Sichuan earthquake, where the government welcomed community organising and community-driven donation campaigns for a limited period of time, giving the NGO sector and bottom-up social activism a boost, as evidenced in various policy areas such as disaster relief and rural community development (F. Wu 126; Xu 9). Nevertheless, the CCP and the Chinese state have been effective in maintaining significant control over civil society and autonomous groups without attempting to completely eliminate their autonomy or existence. The dramatic economic and social changes that have occurred since the 1978 Opening have unsurprisingly engendered numerous conflicts across the society. In response, the CCP and State have adjusted political economic policies to meet the changing demands of workers, migrants, the unemployed, minorities, farmers, local artisans, entrepreneurs, and the growing middle class. Often the demands arising from these groups have resulted in policy changes, including compensation. In other circ*mstances, where these groups remain dissatisfied, the government will tolerate them (ignore them but allow them to continue in the advocacy), or, when the need arises, supress the disaffected groups (F. Wu 2). At the same time, social organisations and other groups in civil society have often “refrained from open and broad contestation against the regime”, thereby gaining the space and autonomy to achieve the objectives (F. Wu 2). Studies of Chinese social or community capital suggest that a form of modern social capital has gradually emerged as Chinese society has become increasingly modernised and liberalised (despite being non-democratic), and that this social capital has begun to play an important role in shaping social and economic lives at the local level. However, this more modern form of social capital, arising from developmental and social changes, competes with traditional social values and social capital, which stresses parochial and particularistic feelings among known individuals while modern social capital emphasises general trust and reciprocal feelings among both known and unknown individuals. The objective element of these traditional values are those government-sanctioned, formal mass organisations such as Communist Youth and the All-China Federation of Women's Associations, where members are obliged to obey the organisation leadership. The predominant subjective values are parochial and particularistic feelings among individuals who know one another, such as guanxi and zongzu (Chen and Lu, 426). The concept of social capital emphasises that the underlying cooperative values found in individuals and groups within a culture are an important factor in solving collective problems. In contrast, the notion of “culture war” focusses on those values and differences that divide social and cultural groups. Barry defines culture wars as increases in volatility, expansion of polarisation, and conflict between those who are passionate about religiously motivated politics, traditional morality, and anti-intellectualism, and…those who embrace progressive politics, cultural openness, and scientific and modernist orientations. (90) The contemporary culture wars across the world manifest opposition by various groups in society who hold divergent worldviews and ideological positions. Proponents of culture war understand various issues as part of a broader set of religious, political, and moral/normative positions invoked in opposition to “elite”, “liberal”, or “left” ideologies. Within this Manichean universe opposition to such issues as climate change, Black Lives Matter, same sex rights, prison reform, gun control, and immigration becomes framed in binary terms, and infused with a moral sensibility (Chapman 8-10). In many disputes, the culture war often devolves into an epistemological dispute about the efficacy of scientific knowledge and authority, or a dispute between “practical” and theoretical knowledge. In this environment, even facts can become partisan narratives. For these “cultural” disputes are often how electoral prospects (generally right-wing) are advanced; “not through policies or promises of a better life, but by fostering a sense of threat, a fantasy that something profoundly pure … is constantly at risk of extinction” (Malik). This “zero-sum” social and policy environment that makes it difficult to compromise and has serious consequences for social stability or government policy, especially in a liberal democratic society. Of course, from the perspective of cultural materialism such a reductionist approach to culture and political and social values is not unexpected. “Culture” is one of the many arenas in which dominant social groups seek to express and reproduce their interests and preferences. “Culture” from this sense is “material” and is ultimately connected to the distribution of power, wealth, and resources in society. As such, the various policy areas that are understood as part of the “culture wars” are another domain where various dominant and subordinate groups and interests engaged in conflict express their values and goals. Yet it is unexpected that despite the pervasiveness of information available to individuals the pool of information consumed by individuals who view the “culture wars” as a touchstone for political behaviour and a narrative to categorise events and facts is relatively closed. This lack of balance has been magnified by social media algorithms, conspiracy-laced talk radio, and a media ecosystem that frames and discusses issues in a manner that elides into an easily understood “culture war” narrative. From this perspective, the groups (generally right-wing or traditionalist) exist within an information bubble that reinforces political, social, and cultural predilections. American and Chinese Reponses to COVID-19 The COVID-19 pandemic first broke out in Wuhan in December 2019. Initially unprepared and unwilling to accept the seriousness of the infection, the Chinese government regrouped from early mistakes and essentially controlled transmission in about three months. This positive outcome has been messaged as an exposition of the superiority of the Chinese governmental system and society both domestically and internationally; a positive, even heroic performance that evidences the populist credentials of the Chinese political leadership and demonstrates national excellence. The recently published White Paper entitled “Fighting COVID-19: China in Action” also summarises China’s “strategic achievement” in the simple language of numbers: in a month, the rising spread was contained; in two months, the daily case increase fell to single digits; and in three months, a “decisive victory” was secured in Wuhan City and Hubei Province (Xinhua). This clear articulation of the positive results has rallied political support. Indeed, a recent survey shows that 89 percent of citizens are satisfied with the government’s information dissemination during the pandemic (C Wu). As part of the effort, the government extensively promoted the provision of “political goods”, such as law and order, national unity and pride, and shared values. For example, severe publishments were introduced for violence against medical professionals and police, producing and selling counterfeit medications, raising commodity prices, spreading ‘rumours’, and being uncooperative with quarantine measures (Xu). Additionally, as an extension the popular anti-corruption campaign, many local political leaders were disciplined or received criminal charges for inappropriate behaviour, abuse of power, and corruption during the pandemic (People.cn, 2 Feb. 2020). Chinese state media also described fighting the virus as a global “competition”. In this competition a nation’s “material power” as well as “mental strength”, that calls for the highest level of nation unity and patriotism, is put to the test. This discourse recalled the global competition in light of the national mythology related to the formation of Chinese nation, the historical “hardship”, and the “heroic Chinese people” (People.cn, 7 Apr. 2020). Moreover, as the threat of infection receded, it was emphasised that China “won this competition” and the Chinese people have demonstrated the “great spirit of China” to the world: a result built upon the “heroism of the whole Party, Army, and Chinese people from all ethnic groups” (People.cn, 7 Apr. 2020). In contrast to the Chinese approach of emphasising national public goods as a justification for fighting the virus, the U.S. Trump Administration used nationalism, deflection, and “culture war” discourse to undermine health responses — an unprecedented response in American public health policy. The seriousness of the disease as well as the statistical evidence of its course through the American population was disputed. The President and various supporters raged against the COVID-19 “hoax”, social distancing, and lockdowns, disparaged public health institutions and advice, and encouraged protesters to “liberate” locked-down states (Russonello). “Our federal overlords say ‘no singing’ and ‘no shouting’ on Thanksgiving”, Representative Paul Gosar, a Republican of Arizona, wrote as he retweeted a Centers for Disease Control list of Thanksgiving safety tips (Weiner). People were encouraged, by way of the White House and Republican leadership, to ignore health regulations and not to comply with social distancing measures and the wearing of masks (Tracy). This encouragement led to threats against proponents of face masks such as Dr Anthony Fauci, one of the nation’s foremost experts on infectious diseases, who required bodyguards because of the many threats on his life. Fauci’s critics — including President Trump — countered Fauci’s promotion of mask wearing by stating accusingly that he once said mask-wearing was not necessary for ordinary people (Kelly). Conspiracy theories as to the safety of vaccinations also grew across the course of the year. As the 2020 election approached, the Administration ramped up efforts to downplay the serious of the virus by identifying it with “the media” and illegitimate “partisan” efforts to undermine the Trump presidency. It also ramped up its criticism of China as the source of the infection. This political self-centeredness undermined state and federal efforts to slow transmission (Shear et al.). At the same time, Trump chided health officials for moving too slowly on vaccine approvals, repeated charges that high infection rates were due to increased testing, and argued that COVID-19 deaths were exaggerated by medical providers for political and financial reasons. These claims were amplified by various conservative media personalities such as Rush Limbaugh, and Sean Hannity and Laura Ingraham of Fox News. The result of this “COVID-19 Denialism” and the alternative narrative of COVID-19 policy told through the lens of culture war has resulted in the United States having the highest number of COVID-19 cases, and the highest number of COVID-19 deaths. At the same time, the underlying social consensus and social capital that have historically assisted in generating positive public health outcomes has been significantly eroded. According to the Pew Research Center, the share of U.S. adults who say public health officials such as those at the Centers for Disease Control and Prevention are doing an excellent or good job responding to the outbreak decreased from 79% in March to 63% in August, with an especially sharp decrease among Republicans (Pew Research Center 2020). Social Capital and COVID-19 From the perspective of social or community capital, it could be expected that the American response to the Pandemic would be more effective than the Chinese response. Historically, the United States has had high levels of social capital, a highly developed public health system, and strong governmental capacity. In contrast, China has a relatively high level of governmental and public health capacity, but the level of social capital has been lower and there is a significant presence of traditional values which emphasise parochial and particularistic values. Moreover, the antecedent institutions of social capital, such as weak and inefficient formal institutions (Batjargal et al.), environmental turbulence and resource scarcity along with the transactional nature of guanxi (gift-giving and information exchange and relationship dependence) militate against finding a more effective social and community response to the public health emergency. Yet China’s response has been significantly more successful than the Unites States’. Paradoxically, the American response under the Trump Administration and the Chinese response both relied on an externalisation of the both the threat and the justifications for their particular response. In the American case, President Trump, while downplaying the seriousness of the virus, consistently called it the “China virus” in an effort to deflect responsibly as well as a means to avert attention away from the public health impacts. As recently as 3 January 2021, Trump tweeted that the number of “China Virus” cases and deaths in the U.S. were “far exaggerated”, while critically citing the Centers for Disease Control and Prevention's methodology: “When in doubt, call it COVID-19. Fake News!” (Bacon). The Chinese Government, meanwhile, has pursued a more aggressive foreign policy across the South China Sea, on the frontier in the Indian sub-continent, and against states such as Australia who have criticised the initial Chinese response to COVID-19. To this international criticism, the government reiterated its sovereign rights and emphasised its “victimhood” in the face of “anti-China” foreign forces. Chinese state media also highlighted China as “victim” of the coronavirus, but also as a target of Western “political manoeuvres” when investigating the beginning stages of the pandemic. The major difference, however, is that public health policy in the United States was superimposed on other more fundamental political and cultural cleavages, and part of this externalisation process included the assignation of “otherness” and demonisation of internal political opponents or characterising political opponents as bent on destroying the United States. This assignation of “otherness” to various internal groups is a crucial element in the culture wars. While this may have been inevitable given the increasingly frayed nature of American society post-2008, such a characterisation has been activity pushed by local, state, and national leadership in the Republican Party and the Trump Administration (Vogel et al.). In such circ*mstances, minimising health risks and highlighting civil rights concerns due to public health measures, along with assigning blame to the democratic opposition and foreign states such as China, can have a major impact of public health responses. The result has been that social trust beyond the bubble of one’s immediate circle or those who share similar beliefs is seriously compromised — and the collective action problem presented by COVID-19 remains unsolved. Daniel Aldrich’s study of disasters in Japan, India, and US demonstrates that pre-existing high levels of social capital would lead to stronger resilience and better recovery (Aldrich). Social capital helps coordinate resources and facilitate the reconstruction collectively and therefore would lead to better recovery (Alesch et al.). Yet there has not been much research on how the pool of social capital first came about and how a disaster may affect the creation and store of social capital. Rebecca Solnit has examined five major disasters and describes that after these events, survivors would reach out and work together to confront the challenges they face, therefore increasing the social capital in the community (Solnit). However, there are studies that have concluded that major disasters can damage the social fabric in local communities (Peaco*ck et al.). The COVID-19 epidemic does not have the intensity and suddenness of other disasters but has had significant knock-on effects in increasing or decreasing social capital, depending on the institutional and social responses to the pandemic. In China, it appears that the positive social capital effects have been partially subsumed into a more generalised patriotic or nationalist affirmation of the government’s policy response. Unlike civil society responses to earlier crises, such as the 2008 Sichuan earthquake, there is less evidence of widespread community organisation and response to combat the epidemic at its initial stages. This suggests better institutional responses to the crisis by the government, but also a high degree of porosity between civil society and a national “imagined community” represented by the national state. The result has been an increased legitimacy for the Chinese government. Alternatively, in the United States the transformation of COVID-19 public health policy into a culture war issue has seriously impeded efforts to combat the epidemic in the short term by undermining the social consensus and social capital necessary to fight such a pandemic. Trust in American institutions is historically low, and President Trump’s untrue contention that President Biden’s election was due to “fraud” has further undermined the legitimacy of the American government, as evidenced by the attacks directed at Congress in the U.S. capital on 6 January 2021. As such, the lingering effects the pandemic will have on social, economic, and political institutions will likely reinforce the deep cultural and political cleavages and weaken interpersonal networks in American society. Conclusion The COVID-19 pandemic has devastated global public health and impacted deeply on the world economy. Unsurprisingly, given the serious economic, social, and political consequences, different government responses have been highly politicised. Various quarantine and infection case tracking methods have caused concern over state power intruding into private spheres. The usage of face masks, social distancing rules, and intra-state travel restrictions have aroused passionate debate over public health restrictions, individual liberty, and human rights. Yet underlying public health responses grounded in higher levels of social capital enhance the effectiveness of public health measures. In China, a country that has generally been associated with lower social capital, it is likely that the relatively strong policy response to COVID-19 will both enhance feelings of nationalism and Chinese exceptionalism and help create and increase the store of social capital. 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Abstract:

“Live free or die!” (New Hampshire State motto) Should individuals be free to make lifestyle decisions (such as what, when and how much to eat and how much physical activity to take), without undue interference from the state, even when their decisions may lead to negative consequences (obesity, heart disease, diabetes)? The UN Declaration of Human Rights enshrines the belief that “All human beings are born free and equal in dignity and rights”. The philosophy of Libertarianism (Locke) proposes that rights can be negative (e.g. the freedom to be free from outside interference) as well as positive (e.g. the right to certain benefits supplied by others). Robert Nozick, a proponent of Libertarianism, has argued that we have the right to make informed decisions about our lives without unnecessary interference. This entitlement requires that we exercise our rights only as far as they do not infringe the rights of others. The popular notion of the “Nanny State” (often used derogatively) is discussed, and the metaphor is extended to draw on the Super Nanny phenomenon, a reality television series that has been shown in numerous countries including the UK, the US, and Australia. It is argued in this paper that social marketing, when done well, can help create a “Super Nanny State” (implying positive connotations). In the “Nanny State” people are told what to do; in the “Super Nanny State” people are empowered to make healthier decisions. Social marketing applies commercial marketing principles to “sell” ideas (rather than goods or services) with the aim of improving the welfare of individuals and/or society. Where the common good may not be easily discerned, Donovan and Henley recommended using the UN Declaration of Human Rights as the baseline reference point. Social marketing is frequently used to persuade individuals to make healthier lifestyle decisions such as “eat less [saturated] fat”, “eat two fruits and five veg a day”, “find thirty minutes of physical activity a day”. Recent medical gains in immunisation, sanitation and treating infectious diseases mean that the health of a population can now be more improved by influencing lifestyle decisions than by treating illness (Rothschild). Social marketing activities worldwide are directed at influencing lifestyle decisions to prevent or minimise lifestyle diseases. “Globesity” is the new epidemic (Kline). Approximately one billion people globally are overweight or obese (compared to 850 million who are underweight); most worryingly, about 10% of children worldwide are now overweight or obese with rising incidence of type 2 diabetes in this population (Yach, Stuckler, and Brownwell). “Nanny state” is a term people often use derogatively to refer to government intervention (see Henley and Jackson). Knag (405) made a distinction between old-style, authoritarian “paternalism”, which chastised the individual using laws and sanctions, and a newer “maternalism” or “nanny state” which smothers the individual with “education and therapy (or rather, propaganda and regulation)”. Knag’s use of the term “Nanny State” still has pejorative connotations. In the “Nanny State”, governments are seen as using the tool of social marketing to tell people what they should and shouldn’t do, as if they were children being supervised by a nanny. At the extreme, people may be afraid that social marketing could be used by the State as a way to control the thoughts of the vulnerable, a view expressed some years ago by participants in a survey of attitudes towards social marketing (Laczniak, Lusch, and Murphy). More recently, the debate is more likely to focus on why social marketing often appears to be ineffective, rather than frighteningly effective (Hastings, Stead, and Macintosh). Another concern is the high level of fear being generated by much of the social marketing effort (Hastings and MacFadyen; Henley). It is as if nanny thinks she must scream at her children all the time to warn them that they will die if they don’t listen to her. However, by extension, I am suggesting that the “Super Nanny State” metaphor could have positive associations, with an authoritative (rather than authoritarian) parenting figure, one who explains appropriate sanctions (laws and regulations) but who is also capable of informing, inspiring and empowering. Still, the Libertarian ethical viewpoint would question whether governments, through social marketers, have the right to try to influence people’s lifestyle decisions such as what and how much to eat, how much to exercise, etc. In the rise of the “Nanny State”, Holt argued that governments are extending the range of their regulatory powers, restricting free markets and intruding into areas of personal responsibility, all under the guise of acting for the public’s good. A number of arguments, discussed below, can be proposed to justify interference by the State in the lifestyle decisions of individuals. The Economic Argument One argument that is often quoted to justify interference by the State is that the economic costs of allowing unsafe/unhealthy behaviours have to be borne by the community. It has been estimated in the US that medical costs relating to diabetes (which is associated directly with obesity) increased from $44 billion to $92 billion in five years (Yach, et al). The economic argument can be useful for persuading governments to invest in prevention but is not sufficient as a fundamental justification for interference. If we say that we want people to eat more healthily because their health costs will be burdensome to the community, we imply that we would not ask them to do so if their health costs were not burdensome, even if they were dying prematurely as a result. The studies relating to the economic costs of obesity have not been as extensive as those relating to the economic costs of tobacco (Yach, et al), where some have argued that prematurely dying of smoking-related diseases is less costly to the State than the costs incurred in living to old age (Barendregt, et al). This conclusion has been disputed (Rasmussen et al), but even if true, would not provide sufficient justification to cease tobacco control efforts. Similarly, I think people would expect social marketing efforts relating to nutrition and physical activity to continue even if an economic analysis showed that people dying prematurely from obesity-related illnesses were costing the State less overall in health care costs than people living an additional twenty years. The Consumer Protection Argument Some degree of interference by the State is desirable and often necessary because people are not entirely self-reliant in every circ*mstance (Mead). The social determinants of health (Marmot and Wilkinson) are sufficiently well-understood to justify government regulation to reduce inequalities in housing, education, access to health services, etc. Implicit in the criticism that the “Nanny State” treats people like children is the assumption that children are treated without dignity and respect. The positive parent or “Super Nanny” treats children with respect but recognises their vulnerability in unfamiliar or dangerous contexts. A survey of opinion in the UK in 2004 by the King’s Fund, an independent think tank, found that the public generally supported government initiatives to encourage healthier school meals; ensure cheaper fruit and vegetables; pass laws to limit salt, fat and sugar in foods; stop advertising junk foods for children and regulate for nutrition labels on food (UK public wants a “Nanny State”). The UK’s recently established National Social Marketing Centre has made recommendations for social marketing strategies to improve public health and Prime Minister Tony Blair has responded by making public health, especially the growing obesity problem, a central issue for government initiatives, offering a “helping hand” approach (Triggle). The Better Alternative Argument Wikler considered the case for more punitive government intervention in the obesity debate by weighing the pros and cons of an interesting strategy: the introduction of a “fat tax” that would require citizens to be weighed and, if found to be overweight, require them to pay a surcharge. He concluded that this level of state interference would not be justified because there are other ways to appeal to the risk-taker’s autonomy, through education and therapeutic efforts. Governments can use social marketing as one of these better alternatives to punitive sanctions. The Level Playing Field Argument Social marketers argue that many lifestyle behaviours are not entirely voluntary (O’Connell and Price). For example, it is argued that an individual’s choices about eating fast food, consuming sweetened soft drinks, and living sedentary lives have already been partially determined by commercial efforts. Thus, they argue that social marketing efforts are intended to level the playing field – educate, inform, and restore true personal autonomy to people, enabling them to make rational choices (Smith). For example, Kline’s media education program in Canada, with a component of “media risk reduction”, successfully educated young consumers (elementary school children) with strategies for “tuning out” by asking them to come up with a plan for what they would do if they “turned off TV, video games and PCs for a whole week?” (p. 249). The “tune out challenge” resulted in a reduction of media exposure (80%) displaced into active leisure pursuits. A critical aspect of this intervention was the contract drawn up in advance, with the children setting their own goals and strategies (Kline). In this view, the state is justified in trying to level the playing field, by using social marketing to offer information as well as alternative, healthier choices that can be freely accepted or rejected (Rothschild). Conclusion A real concern is that when people are treated like children, they become like children, retaining their desires and appetites but abdicating responsibility for their individual choices to the state (Knag). Some smokers, for example, declare that they will continue to smoke until the government bans smoking (Brown). Governments and social marketers have a responsibility to fund/design campaigns so that the audience views the message as informative rather than proscriptive. Joffe and Mindell (967) advocated the notion of a “canny state” with “less reliance on telling people what to do and more emphasis on making healthy choices easier”. Finally, one of the central tenets of marketing is the concept of “exchange” – the marketer must identify the benefits to be gained from buying a product. In social marketing terms, interference in an individual’s right to act freely can be effective and justified when the benefits are clearly identifiable and credible. Rothschild described marketing’s role as providing a middle point between libertarianism and paternalism, offering free choice and incentives to behave in ways that benefit the common good. Rather than shaking a finger at the individual (along the lines of earlier “Don’t Do Drugs” campaigns), the “Super Nanny” state, via social marketing, can inform and engage individuals in ways that make healthier choices more appealing and the individual feel more empowered to choose them. References Barendregt, J.J., L. Bonneux, O.J. van der Maas. “The Health Care Costs of Smoking.” New England Journal of Medicine 337.15 (1997): 1052-7. Brown, D. Depressed Men: Angry Women: Non-Stereotypical Gender Responses to Anti-Smoking Messages in Older Smokers. Unpublished Masters dissertation, Edith Cowan University, Perth, Western Australia, 2001. Donovan, R., and N. Henley. Social Marketing: Principles and Practice. Melbourne: IP Communications, 2003. Joffe, M., and J. Mindell. “A Tentative Step towards Healthy Public Policy.” Journal of Epidemiology and Community Health 58 (2004): 966-8. Hastings, G.B., and L. MacFadyen. “The Limitations of Fear Messages.” Tobacco Control 11 (2002): 73-5. Hastings, G.B., M. Stead, and A.M. Macintosh. “Rethinking Drugs Prevention: Radical Thoughts from Social Marketing.” Health Education Journal 61.4 (2002): 347-64. Henley, N. “You Will Die! Mass Media Invocations of Existential Dread.” M/C Journal 5.1 (2002). 1 May 2006 http://journal.media-culture.org.au/0203/youwilldie.php>. Henley, N., and J. Jackson. “Is It ‘Too Bloody Late’? Older People’s Response to the National Physical Activity Guidelines.” Journal of Research for Consumers 10 (2006). 7 Aug. 2006 <http://www.jrconsumers.com/_data/page/3180/ NPAGs_paper_consumer_version_may_06.pdf>. Holt, T. The Rise of the Nanny State: How Consumer Advocates Try to Run Our Lives. US: Capital Research Centre, 1995. Kline, S. “Countering Children’s Sedentary Lifestyles: An Evaluative Study of a Media-Risk Education Approach.” Childhood 12.2 (2005): 239-58. Knag, S. “The Almighty, Impotent State: Or, the Crisis of Authority.” Independent Review 1.3 (1997): 397-413. Laczniak, G.R., R.F. Lusch, and P. Murphy. “Social Marketing: Its Ethical Dimensions.” Journal of Marketing 43 (Spring 1979): 29-36. Locke, J. An Essay Concerning Human Understanding. Ed. J.W. Yolton. London: J.M. Dent & Sons, 1690/1961. Marmot, M.G., and R.G. Wilkinson, R.G., eds. Social Determinants of Health. Oxford: Oxford University Press, 1999. Mead, L. “Telling the Poor What to Do.” Public Interest 6 Jan. 1998. 1 May 2006 <http://www.polisci.wisc.edu/~soss/Courses/PA974/Readings/week%208/Mead_1998.pdf>. National Social Marketing Centre. It’s Our Health! Realising the Potential of Effective Social Marketing. Summary Report. 7 Aug. 2006 http://www.nsms.org.uk/images/CoreFiles/NCCSUMMARYItsOurHealthJune2006.pdf>. Nozick, R. Anarchy, State and Utopia. New York: Basic Books, 1974. O’Connell, J.K., and J.H. Price. “Ethical Theories for Promoting Health through Behavioral Change.” Journal of School Health 53.8 (1983): 476-9. Rasmussen, S.R., E. Prescott, T.I.A. Sorensen, and J. Sogaard. “The Total Lifetime Costs of Smoking”. European Journal of Public Health 14 (2004): 95-100. Rothschild, M. “Carrots, Sticks, and Promises: A Conceptual Framework for the Management of Public Health and Social Issue Behaviors.” Journal of Marketing 63.4 (1999): 24-37. Smith, A. “Setting a Strategy for Health.” British Medical Journal 304.6823 (8 Feb. 1992): 376-9. Triggle, N. “From Nanny State to a Helping Hand”. BBC News 25 July 2006. 9 Aug. 2006 http://news.bbc.co.uk/1/hi/health/5214276.stm>. “UK Public Wants a ‘Nanny State’”. BBC News 28 June 2004. 9 Aug. 2006 http://news.bbc.co.uk/1/hi/health/3839447.stm>. United Nations, Office of the High Commissioner of Human Rights. Universal Declaration of Human Rights. 18 Sep. 2001 http://www.unhchr.ch/udhr/lang/eng.htm>. Wikler, D. “Persuasion and Coercion for Health: Ethical Issues in Government Efforts to Change Life-Styles.” Millbank Memorial Fund Quarterly, Health and Society 56.3 (1978): 303-38. Yach, D., D. Stuckler, and K.D. Brownwell. “Epidemiological and Economic Consequences of the Global Epidemics of Obesity and Diabetes.” Nature Medicine 12.1 (2006): 62-6. Citation reference for this article MLA Style Henley, Nadine. "Free to Be Obese in a ‘Super Nanny State’?." M/C Journal 9.4 (2006). echo date('d M. Y'); ?> <http://journal.media-culture.org.au/0609/6-henley.php>. APA Style Henley, N. (Sep. 2006) "Free to Be Obese in a ‘Super Nanny State’?," M/C Journal, 9(4). Retrieved echo date('d M. Y'); ?> from <http://journal.media-culture.org.au/0609/6-henley.php>.

Abstract:

Photo by Sharon McCutcheon on Unsplash ABSTRACT COVID-19 highlighted a disproportionate impact upon marginalized communities that needs to be addressed. Specifically, a focus on equity rather than equality would better address and prevent the disparities seen in COVID-19. A distributive justice framework can provide this great benefit but will succeed only if the medical community engages in outreach, anti-racism measures, and listens to communities in need. INTRODUCTION COVID-19 disproportionately impacted communities of color and lower socioeconomic status, sparking political discussion about existing inequities in the US.[1] Some states amended their guidelines for allocating resources, including vaccines, to provide care for marginalized communities experiencing these inequities, but there has been no clear consensus on which guidelines states should amend or how they should be ethically grounded. In part, this is because traditional justice theories do not acknowledge the deep-seated institutional and interpersonal discrimination embedded in our medical system. Therefore, a revamped distributive justice approach that accounts for these shortcomings is needed to guide healthcare decision-making now and into the post-COVID era. BACKGROUND Three terms – health disparity, health inequities, and health equity – help frame the issue. A health disparity is defined as any difference between populations in terms of disease incidence or adverse health events, such as morbidity or mortality. In contrast, health inequities are health disparities due to avoidable systematic structures rooted in racial, social, and economic injustice.[2] For example, current data demonstrate that Black, Latino, Indigenous Americans, and those living in poverty suffer higher morbidity and mortality rates from COVID-19.[3] Finally, health equity is the opportunity for anyone to attain his or her full health potential without interference from systematic structures and factors that generate health inequities, including race, socioeconomic status, gender, ethnicity, religion, sexual orientation, or geography.[4] ANALYSIS Health inequities for people of color with COVID-19 have led to critiques of states that do not account for race in their resource allocation guidelines.[5] For example, the Massachusetts Department of Public Health revised its COVID-19 guidelines regarding resource allocation to patients with the best chance of short-term survival.[6] Critics have argued that this change addresses neither preexisting structural inequities nor provider bias that may have led to comorbidities and increased vulnerability to COVID-19. By failing to address race specifically, they argue the policy will perpetuate poorer outcomes in already marginalized groups. As the inequities in COVID-19 outcomes continue to be uncovered and the data continue to prove that marginalized communities suffered disproportionately, we, as healthcare providers, must reconsider our role in addressing the injustices. Our actions must be ethically grounded in the concept of justice. l. Primary Theories of Justice The principle of justice in medical ethics relates to how we ought to treat people and allocate resources. Multiple theories have emerged to explain how justice should be implemented, with three of the most prominent being egalitarianism, utilitarianism, and distributive. This paper argues that distributive justice is the best framework for remedying past actions and enacting systemic changes that may persistently prevent injustices. An egalitarian approach to justice states all individuals are equal and, therefore, should have identical access to resources. In the allocation of resources, an egalitarian approach would support a strict distribution of equal value regardless of one’s attributes or characteristics. Putting this theory into practice would place a premium on guidelines based upon first-come, first-served basis or random selection.[7] However, the egalitarian approach taken in the UK continues to worsen health inequities due to institutional and structural discrimination.[8] A utilitarian approach to justice emphasizes maximizing overall benefits and achieving the greatest good for the greatest number of people. When resources are limited, the utilitarian principle historically guides decision-making. In contrast to the egalitarian focus on equal distribution, utilitarianism focuses on managing distributions to maximize numerical outcomes. During the COVID-19 pandemic, guidelines for allocating resources had utilitarian goals like saving the most lives, which may prioritize the youthful and those deemed productive in society, followed by the elderly and the very ill. It is important to reconsider using utilitarian approaches as the default in the post-COVID healthcare community. These approaches fail to address past inequity, sacrificing the marginalized in their emphasis on the greatest amount of good rather than the type of good. Finally, a distributive approach to justice mandates resources should be allocated in a manner that does not infringe individual liberties to those with the greatest need. Proposed by John Rawls in a Theory of Justice, this approach requires accounting for societal inequality, a factor absent from egalitarianism and utilitarianism.[9] Naomi Zack elaborates how distributive justice can be applied to healthcare, outlining why racism is a social determinant of health that must be acknowledged and addressed.[10] Until there are parallel health opportunities and better alignment of outcomes among different social and racial groups, the underlying systemic social and economic variables that are driving the disparities must be fixed. As a society and as healthcare providers, we should be striving to address the factors that perpetuate health inequities. While genetics and other variables influence health, the data show proportionately more exposure, more cases, and more deaths in the Black American and Hispanic populations. Preexisting conditions and general health disparities are signs of health inequity that increased vulnerability. Distributive justice as a theoretical and applied framework can be applied to preventable conditions that increase vulnerability and can justify systemic changes to prevent further bias in the medical community. During a pandemic, egalitarian and utilitarian approaches to justice are prioritized by policymakers and health systems. Yet, as COVID-19 has demonstrated, they further perpetuate the death and morbidity of populations that face discrimination. These outcomes are due to policies and guidelines that overall benefit white communities over communities of color. Historically, US policy that looks to distribute resources equally (focusing on equal access instead of outcomes), in a color-blind manner, has further perpetuated poor outcomes for marginalized communities.[11] ll. Historical and Ongoing Disparities Across socio-demographic groups, the medical system exacerbates historical and current inequities. Members of marginalized races,[12] women,[13] LGBTQ people,[14] and poor people[15] experience trauma caused by discrimination, marginalization, and failure to access high-quality public and private goods. Through the unequal treatment of marginalized communities, these historic traumas continue. In the US, people of color do not receive equal and fair medical treatment. A meta-analysis found that Hispanics and Black Americans were significantly undertreated for pain compared to their white counterparts over the last 20 years.[16] This is partly due to provider bias. Through interviewing medical trainees, a study by the National Academy of Science found that half of medical students and residents harbored racist beliefs such as “Black people’s nerve endings are less sensitive than white people’s” or “Black people’s skin is thicker than white people’s skin.”[17] More than 3,000 Indigenous American women were coerced, threatened, and deliberately misinformed to ensure cooperation in forced sterilization.[18] Hispanic people have less support in seeking medical care, in receiving culturally appropriate care, and they suffer from the medical community’s lack of resources to address language barriers.[19] In the US, patients of different sexes do not receive the same quality of healthcare. Despite having greater health needs, middle-aged and older women are more likely to have fewer hospital stays and fewer physician visits compared to men of similar demographics and health risk profiles.[20] In the field of critical care, women are less likely to be admitted to the ICU, less likely to receive interventions such as mechanical ventilation, and more likely to die compared to their male ICU counterparts.[21] In the US, patients of different socioeconomic statuses do not receive the same quality of healthcare. Low-income patients are more likely to have higher rates of infant mortality, chronic disease, and a shorter life span.[22] This is partly due to the insurance-based discrimination in the medical community.[23] One in three deaths of those experiencing homelessness could have been prevented by timely and effective medical care. An individual experiencing homelessness has a life expectancy that is decades shorter than that of the average American.[24] lll. Action Needed: Policy Reform While steps need to be taken to provide equitable care in the current pandemic, including the allocation of vaccines, they may not address the historical failures of health policy, hospital policy, and clinical care to eliminate bias and ensure equal treatment of patients. According to an applied distributive justice framework, inequities must be corrected. Rather than focusing primarily on fair resource allocation, medicine must be actively anti-racist, anti-sexist, anti-transphobic, and anti-discriminatory. Evidence has shown that the health inequities caused by COVID-19 are smaller in regions that have addressed racial wealth gaps through forms of reparations.[25] Distributive justice calls for making up for the past using tools of allocation as well as tools to remedy persistent problems. For example, Brigham and Women’s Hospital in Boston, MA, began “Healing ARC,” a pilot initiative that involves acknowledgement, redress, and closure on an institutional level.[26] Acknowledgement entails informing patients about disparities at the hospital, claiming responsibility, and incorporating community ideas for redress. Redress involves a preferential admission option for Black and Hispanic patients to specialty services, especially cardiovascular services, rather than general medicine. Closure requires that community and patient stakeholders work together to ensure that a new system is in place that will continue to prioritize equity. Of note, redress could take the form of cash transfers, discounted or free care, taxes on nonprofit hospitals that exclude patients of color,[27] or race-explicit protocol changes (such as those being instituted by Brigham and Women’s Hospital that admit patients historically denied access to certain forms of medical care). In New York, for instance, the New York State Bar Association drafted the COVID-19 resolutions to ensure that emergency regulations and guidelines do not discriminate against communities of color, and even mandate that diverse patient populations be included in clinical trials.[28] Also, physicians must listen to individuals from marginalized communities to identify needs and ensure that community members take part in decision-making. The solution is not to simply build new health centers in communities of color, as this may lead to tiers of care. Rather, local communities should have a chance to impact existing hospital policy and should also use their political participation to further their healthcare interests. Distributive justice does not seek to disenfranchise groups that hold power in the system. It aims to transform the system so that those in power do not continue to obtain unfair benefits at the expense of others. The framework accounts for unjust historical oppression and current injustices in our system to provide equitable outcomes to all who access the system. In this vein, we can begin to address the flagrant disparities between communities that have always – and continue to – exist in healthcare today.[29] CONCLUSION As equality focuses on access, it currently fails to do justice. Instead of outcomes, it is time to focus on equity. A focus on equity rather than equality would better address and prevent the disparities seen in COVID-19. A distributive justice framework can gain traction in clinical decision-making guidelines and system-level reallocation of resources but will succeed only if the medical community engages in outreach, anti-racism measures, and listens to communities in need. There should be an emphasis on implementing a distributive justice framework that treats all patients equitably, accounts for historical harm, and focuses on transparency in allocation and public health decision-making. [1] APM Research Lab Staff. 2020. “The Color of Coronavirus: COVID-19 Deaths by Race and Ethnicity in the U.S.” APM Research Lab. https://www.apmresearchlab.org/covid/deaths-by-race. [2] Bharmal, N., K. P. Derose, M. Felician, and M. M. Weden. 2015. “Understanding the Upstream Social Determinants of Health.” California: RAND Corporation 1-18. https://www.rand.org/pubs/working_papers/WR1096.html. [3] Yancy, C. W. 2020. “COVID-19 and African Americans.” JAMA. 323 (19): 1891-2. https://doi.org/10.1001/jama.2020.6548; Centers for Disease Control and Prevention. 2020. “COVID-19 in Racial and Ethnic Health Disparities.” Centers for Disease Control and Prevention. https://www.cdc.gov/coronavirus/2019-ncov/community/health-equity/racial-ethnic-disparities/index.html. [4] Braveman, P., E. Arkin, T. Orleans, D. Proctor, and A. Plough. 2017. “What is Health Equity?” Robert Wood Johnson Foundation. https://www.rwjf.org/en/library/research/2017/05/what-is-health-equity-.html. [5] Bedinger, M. 2020 Apr 22. “After Uproar, Mass. Revises Guidelines on Who Gets an ICU Bed or Ventilator Amid COVID-19 Surge.” Wbur. https://www.wbur.org/commonhealth/2020/04/20/mass-guidelines-ventilator-covid-coronavirus; Wigglesworth, A. 2020 May 11. “Institutional Racism, Inequity Fuel High Minority Death Toll from Coronavirus, L.A. Officials Say.” Los Angeles Times. https://www.latimes.com/california/story/2020-05-11/institutional-racism-inequity-high-minority-death-toll-coronavirus. [6] Executive Office of Health and Human Services Department of Public Health. 2020 Oct 20. “Crises Standards of Care Planning and Guidance for the COVID-19 Pandemic.” Commonwealth of Massachusetts. https://www.mass.gov/doc/crisis-standards-of-care-planning-guidance-for-the-covid-19-pandemic. [7] Emanuel, E. J., G. Persad, R. Upshur, et al. 2020. “Fair Allocation of Scarce Medical Resources in the Time of Covid-19. New England Journal of Medicine 382: 2049-55. https://doi.org/10.1056/NEJMsb2005114. [8] Salway, S., G. Mir, D. Turner, G. T. Ellison, L. Carter, and K. Gerrish. 2016. “Obstacles to "Race Equality" in the English National Health Service: Insights from the Healthcare Commissioning Arena.” Social Science and Medicine 152: 102-110. https://doi.org/10.1016/j.socscimed.2016.01.031. [9] Rawls, J. A Theory of Justice (Revised Edition) (Cambridge, MA: Belknap Press of Harvard University Press, 1999). [10] Zack, N. Applicative Justice: A Pragmatic Empirical Approach to Racial Injustice (New York: The Rowman & Littlefield Publishing Group, 2016). [11] Charatz-Litt, C. 1992. “A Chronicle of Racism: The Effects of the White Medical Community on Black Health.” Journal of the National Medical Association 84 (8): 717-25. http://hdl.handle.net/10822/857182. [12] Washington, H. A. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (New York: Doubleday, 2006). [13] d'Oliveira, A. F., S. G. Diniz, and L. B. Schraiber. 2002. “Violence Against Women in Health-care Institutions: An Emerging Problem.” Lancet. 359 (9318): 1681-5. https://doi.org/10.1016/S0140-6736(02)08592-6. [14] Hafeez, H., M. Zeshan, M. A. Tahir, N. Jahan, and S. Naveed. 2017. “Health Care Disparities Among Lesbian, Gay, Bisexual, and Transgender Youth: A Literature Review. Cureus 9 (4): e1184. https://doi.org/10.7759/cureus.1184; Drescher, J., A. Schwartz, F. Casoy, et al. 2016. “The Growing Regulation of Conversion Therapy.” Journal of Medical Regulation 102 (2): 7-12. https://doi.org/10.30770/2572-1852-102.2.7; Stroumsa, D. 2014. “The State of Transgender Health Care: Policy, Law, and Medical Frameworks.” American Journal of Public Health. 104 (3): e31-8. https://doi.org/10.2105/AJPH.2013.301789. [15] Stepanikova, I., and G. R. Oates. 2017. “Perceived Discrimination and Privilege in Health Care: The Role of Socioeconomic Status and Race.” American Journal of Preventative Medicine. 52 (1s1): S86-s94. https://doi.org/10.1016/j.amepre.2016.09.024; Swartz, K. “Health Care for the Poor: For Whom, What Care, and Whose Responsibility?” In Cancian, M., and S. Danziger (Eds.). Changing Poverty, Changing Policies (New York: Russell Sage Foundation Press, 2009), 69-74. [16] Meghani, S. H., E. Byun, and R. M. Gallagher. 2012. “Time to Take Stock: A Meta-analysis and Systematic Review of Analgesic Treatment Disparities for Pain in the United States.” Pain Medicine 13 (2): 150-74. https://doi.org/10.1111/j.1526-4637.2011.01310.x; Williams, D. R., and T. D. Rucker. 2000. “Understanding and Addressing Racial Disparities in Health Care.” Health Care Financing Review 21 (4): 75-90. https://scholar.harvard.edu/davidrwilliams/dwilliam/publications/understanding-and-addressing-racial-disparities-health. [17] Hoffman, K. M., S. Trawalter, J. R. Axt, and M. N. Oliver. 2016. “Racial Bias in Pain assessment and treatment recommendations, and false beliefs about biological Differences Between Blacks and Whites.” PNAS 113 (16): 4296-4301. https://doi.org/10.1073/pnas.1516047113. [18] Pacheco, C. M., S. M. Daley, T. Brown, M. Filipp, K. A. Greiner, and C. M. Daley. 2013. “Moving Forward: Breaking the Cycle of Mistrust Between American Indians and Researchers.” American Journal of Public Health. 103 (12): 2152-9. https://doi.org/10.2105/AJPH.2013.301480. [19] Velasco-Mondragon, E., A. Jimenez, A. G. Palladino-Davis, D. Davis, and J. A. Escamilla-Cejudo. 2016. “Hispanic Health in the USA: A Scoping Review of the Literature.” Public Health Reviews 37:31. https://doi.org/10.1186/s40985-016-0043-2. [20] Cameron, K. A., J. Song, L. M. Manheim, and D. D. Dunlop. 2010. “Gender Disparities in Health and Healthcare Use Among Older Adults.” Journal of Women’s Health (Larchmt) 19 (9): 1643-50. https://doi.org/10.1089/jwh.2009.1701. [21] Bierman, A. S. 2007. “Sex Matters: Gender Disparities in Quality and Outcomes of Care. Canadian Medical Association Journal 177 (12): 1520-1. https://doi.org/10.1503/cmaj.071541; Fowler, R. A., S. Sabur, P. Li, et al. 2007. “Sex-and Age-based Differences in the Delivery and Outcomes of Critical Care. Canadian Medical Association Journal 177 (12): 1513-9. https://doi.org/10.1503/cmaj.071112. [22] McLaughlin, D. K., and C. S. Stokes. 2002. “Income Inequality and Mortality in US Counties: Does Minority Racial Concentration Matter?” American Journal of Public Health 92 (1): 99-104. https://doi.org/.10.2105/ajph.92.1.99; Shea, S., J. Lima, A. Diez-Roux, N. W. Jorgensen, and R. L. McClelland. 2016. “Socioeconomic Status and Poor Health Outcome at 10 years of Follow-up in the Multi-ethnic Study of Atherosclerosis.” PLoS One 11 (11): e0165651. https://doi.org/10.1371/journal.pone.0165651. [23] Han, X., K. T. Call, J. K. Pintor, G. Alarcon-Espinoza, and A. B. Simon. 2015. “Reports of Insurance-based Discrimination in Health care and its Association with Access to Care.” American Journal of Public Health 105 Suppl 3 (Suppl 3): S517-25. https://doi.org/10.2105/AJPH.2015.302668. [24] Aldridge, R. W., D. Menezes, D. Lewer, et al. 2019. “Causes of Death Among Homeless People: A Population-based Cross-sectional Study of Linked Hospitalization and Mortality Data in England.” Wellcome Open Research 4:49. https://doi.org/10.12688/wellcomeopenres.15151.1. [25] Richardson, E. T., M. M. Malik, W. A. Darity Jr., et al. 2021. “Reparations for Black American Descendants of Persons Enslaved in the U.S. and their Potential Impact on SARS-CoV-2 Transmission.” Social Science and Medicine 276: 113741. https://doi.org/10.1016/j.socscimed.2021.113741. [26] Wispelwey, B., and M. Morse. 2021. “An Antiracist Agenda for Medicine.” Boston Review. http://bostonreview.net/science-nature-race/bram-wispelwey-michelle-morse-antiracist-agenda-medicine. [27] Johnson, S. F., A. Ojo, and H. J. Warraich. 2021. “Academic Health Centers’ Antiracism Strategies Must Extend to their Business Practices.” Annals of Internal Medicine 174 (2): 254-5. https://doi.org/10.7326/M20-6203; Golub, M., N. Calman, C. Ruddock, et al. 2011. “A Community Mobilizes to End Medical Apartheid.” Progress in Community Health Partnerships: Research, Education, and Action 5 (3): 317-25. https://doi.org/10.1353/cpr.2011.0041. [28] New York State Bar Association. 2020. “New York State Bar Association House of Delegates: Revised COVID-19 Resolutions.” https://nysba.org/app/uploads/2020/10/Final-Health-Law-Section-COVID-19-Resolutions_10-8-20-1-1.pdf. [29] Egede, L. E. 2006. “Race, Ethnicity, Culture, and Disparities in Health Care.” Journal of General Internal Medicine 21 (6): 667-669. https://doi.org/10.1111%2Fj.1525-1497.2006.0512.x

Abstract:

Story spreads out through time the behaviors or bodies – the shapes – a self has been or will be, each replacing the one before. Hence a story has before and after, gain and loss. It goes somewhere…Moreover, shape or body is crucial, not incidental, to story. It carries story; it makes story visible; in a sense it is story. Shape (or visible body) is in space what story is in time. (Bynum, quoted in Garland Thomson, 113-114) Drawing on Goffman’s classic work on stigma, research documenting the existence of discrimination and bias against individuals classified as obese goes back five decades. Since Cahnman published “The Stigma of Obesity” in 1968, other researchers have well documented systematic and growing discrimination against fat people (cf. Puhl and Brownell; Puhl and Heuer; Puhl and Heuer; Fikkan and Rothblum). While weight-based stereotyping has a long history (Chang and Christakis; McPhail; Schwartz), contemporary forms of anti-fat stigma and discrimination must be understood within a social and economic context of neoliberal healthism. By neoliberal healthism (see Crawford; Crawford; Metzel and Kirkland), I refer to the set of discourses that suggest that humans are rational, self-determining actors who independently make their own best choices and are thus responsible for their life chances and health outcomes. In such a context, good health becomes associated with proper selfhood, and there are material and social consequences for those who either unwell or perceived to be unwell. While the greatest impacts of size-based discrimination are structural in nature, the interpersonal impacts are also significant. Because obesity is commonly represented (at least partially) as a matter of behavioral choices in public health, medicine, and media, to “remain fat” is to invite commentary from others that one is lacking in personal responsibility. Guthman suggests that this lack of empathy “also stems from the growing perception that obesity presents a social cost, made all the more tenable when the perception of health responsibility has been reversed from a welfare model” (1126). Because weight loss is commonly held to be a reasonable and feasible goal and yet is nearly impossible to maintain in practice (Kassierer and Angell; Mann et al.; Puhl and Heuer), fat people are “in effect, asked to do the impossible and then socially punished for failing” (Greenhalgh, 474). In this article, I explore how weight-based stigma shaped the decisions of bariatric patients to undergo weight loss surgery. In doing so, I underline the work that emotion does in circulating anti-fat stigma and in creating categories of subjects along lines of health and responsibility. As well, I highlight how fat bodies are lived and negotiated in space and place. I then explore ways in which participants take up notions of time, specifically in regard to risk, in discussing what brought them to the decision to have bariatric surgery. I conclude by arguing that it is a dynamic interaction between the material, social, emotional, discursive, and the temporal that produces not only fat embodiment, but fat subjectivity “failed”, and serves as an impetus for seeking bariatric surgery. Methods This article is based on 30 semi-structured interviews with American bariatric patients. At the time of the interview, individuals were between six months and 12 years out from surgery. After obtaining Intuitional Review Board approval, recruitment occurred through a snowball sample. All interviews were audio-taped with permission and verbatim interview transcripts were analyzed by means of a thematic analysis using Dedoose (www.dedoose.com). All names given in this article are pseudonyms. This work is part of a larger project that includes two additional interviews with bariatric surgeons as well as participant-observation research. Findings Navigating Anti-Fat Stigma In discussing what it was like to be fat, all but one of the individuals I interviewed discussed experiencing substantive size-based stigma and discrimination. Whether through overt comments, indirect remarks, dirty looks, open gawking, or being ignored and unrecognized, participants felt hurt, angry, and shamed by friends, family, coworkers, medical providers, and strangers on the street because of the size of their bodies. Several recalled being bullied and even physically assaulted by peers as children. Many described the experience of being fat or very fat as one of simultaneous hypervisibility and invisibility. One young woman, Kaia, said: “I absolutely was not treated like a person … . I was just like this object to people. Just this big, you know, thing. That’s how people treated me.” Nearly all of my participants described being told repeatedly by others, including medical professionals, that their inability to lose weight was effectively a failure of the will. They found these comments to be particularly hurtful because, in fact, they had spent years, even decades, trying to lose weight only to gain the weight back plus more. Some providers and family members seemed to take up the idea that shame could be a motivating force in weight loss. However, as research by Lewis et al.; Puhl and Huerer; and Schafer and Ferraro has demonstrated, the effect this had was the opposite of what was intended. Specifically, a number of the individuals I spoke with delayed care and avoided health-facilitating behaviors, like exercising, because of the discrimination they had experienced. Instead, they turned to health-harming practices, like crash dieting. Moreover, the internalization of shame and blame served to lower a sense of self-worth for many participants. And despite having a strong sense that something outside of personal behavior explained their escalating body weights, they deeply internalized messages about responsibility and self-control. Danielle, for instance, remarked: “Why could the one thing I want the most be so impossible for me to maintain?” It is important to highlight the work that emotion does in circulating such experiences of anti-fat stigma and discrimination. As Fraser et al have argued in their discussion on fat and emotion, the social, the emotional, and the corporeal cannot be separated. Drawing on Ahmed, they argue that strong emotions are neither interior psychological states that work between individuals nor societal states that impact individuals. Rather, emotions are constitutive of subjects and collectivities, (Ahmed; Fraser et al.). Negative emotions in particular, such as hate and fear, produce categories of people, by defining them as a common threat and, in the process, they also create categories of people who are deemed legitimate and those who are not. Thus following Fraser et al, it is possible to see that anti-fat hatred did more than just negatively impact the individuals I spoke with. Rather, it worked to produce, differentiate, and drive home categories of people along lines of health, weight, risk, responsibility, and worth. In this next section, I examine the ways in which anti-fat discrimination works at the interface of not only the discursive and the emotive, but the material as well. Big Bodies, Small Spaces When they discussed their previous lives as very fat people, all of the participants made reference to a social and built environment mismatch, or in Garland Thomson’s terms, a “misfit”. A misfit occurs “when the environment does not sustain the shape and function of the body that enters it” (594). Whereas the built environment offers a fit for the majority of bodies, Garland Thomson continues, it also creates misfits for minority forms of embodiment. While Garland Thomson’s analysis is particular to disability, I argue that it extends to fat embodiment as well. In discussing what it was like to navigate the world as fat, participants described both the physical and emotional pain entailed in living in bodies that did not fit and frequently discussed the ways in which leaving the house was always a potential, anxiety-filled problem. Whereas all of the participants I interviewed discussed such misfitting, it was notable that participants in the Greater New York City area (70% of the sample) spoke about this topic at length. Specifically, they made frequent and explicit mentions of the particular interface between their fat bodies and the Metropolitan Transit Authority (MTA), and the tightly packed spaces of the city itself. Greater New York City area participants frequently spoke of the shame and physical discomfort in having to stand on public transportation for fear that they would be openly disparaged for “taking up too much room.” Some mentioned that transit seats were made of molded plastic, indicating by design the amount of space a body should occupy. Because they knew they would require more space than what was allotted, these participants only took seats after calculating how crowded the subway or train car was and how crowded it would likely become. Notably, the decision to not take a seat was one that was made at a cost for some of the larger individuals who experienced joint pain. Many participants stated that the densely populated nature of New York City made navigating daily life very challenging. In Talia’s words, “More people, more obstacles, less space.” Participants described always having to be on guard, looking for the next obstacle. As Candice put it: “I would walk in some place and say, ‘Will I be able to fit? Will I be able to manoeuvre around these people and not bump into them?’ I was always self-conscious.” Although participants often found creative solutions to navigating the hostile environment of both the MTA and the city at large, they also identified an increasing sense of isolation that resulted from the physical discomfort and embarrassment of not fitting in. For instance, Talia rarely joined her partner and their friends on outings to movies or the theater because the seats were too tight. Similarly, Decenia would make excuses to her husband in order to avoid social situations outside of the home: “I’d say to my husband, ‘I don’t feel well, you go.’ But you know what? It was because I was afraid not to fit, you know?” The anticipatory scrutinizing described by these participants, and the anxieties it produced, echoes Kirkland’s contention that fat individuals use the technique of ‘scanning’ in order to navigate and manage hostile social and built environments. Scanning, she states, involves both literally rapidly looking over situations and places to determine accessibility, as well as a learned assessment and observation technique that allows fat people to anticipate how they will be received in new situations and new places. For my participants, worries about not fitting were more than just internal calculation. Rather, others made all too clear that fat bodies are not welcome. Nina recalled nasty looks she received from other subway riders when she attempted to sit down. Decenia described an experience on a crowded commuter train in which the woman next to her openly expressed annoyance and disgust that their thighs were touching. Talia recalled being aggressively handed a weight loss brochure by a fellow passenger. When asked to contrast their experiences living in New York City with having travelled or lived elsewhere, participants almost universally described the New York as a more difficult place to live for fat people. However, the experiences of three of the Latinas that I interviewed troubled this narrative. Katrina felt that the harassment she received in her country of origin, the Dominican Republic, was far worse than what she now experienced in the New York Metropolitan Area. Although Decenia detailed painful experiences of anti-fat stigma in New York City, she nevertheless described her life as relatively “easy” compared to what it was like in her home country of Brazil. And Denisa contrasted her neighbourhood of East Harlem with other parts of Manhattan: “In Harlem it's different. Everybody is really fat or plump – so you feel a bit more comfortable. Not everybody, but there's a mix. Downtown – there's no mix.” Collectively, their stories serve as a reminder (see Franko et al.; Grabe and Hyde) to be suspicious of over determined accounts that “Latino culture” is (or people of colour communities in general are), more accepting of larger bodies and more resistant to weight-based stigma and discrimination. Their comments also reflect arguments made by Colls, Grosz, and Garland Thomson, who have all pointed to the contingent nature between space and bodies. Colls argue that sizing is both a material and an emotional process – what size we take ourselves to be shifts in different physical and emotional contexts. Grosz suggests that there is a “mutually constitutive relationship between bodies and cities” – one that, I would add, is raced, classed, and gendered. Garland Thomson has described the relationship between bodies and space/place as “a dynamic encounter between world and flesh.” These encounters, she states, are always contingent and situated: “When the spatial and temporal context shifts, so does the fit, and with it meanings and consequences” (592). In this sense, fat is materialized differently in different contexts and in different scales – nation, state, city, neighbourhood – and the materialization of fatness is always entangled with raced, classed, and gendered social and political-economic relations. Nevertheless, it is possible to draw some structural commonalities between divergent parts of the Greater New York City Metropolitan Area. Specifically, a dense population, cramped physical spaces, inaccessible transportation and transportation funding cuts, social norms of fast paced life, and elite, raced, classed, and gendered norms of status and beauty work to materialize fatness in such a way that a ‘misfit’ is often the result for fat people who live and/or work in this area. And importantly, misfitting, as Garland Thomson argues, has consequences: it literally “casts out” when the “shape and function of … bodies comes into conflict with the shape and stuff of the built world” (594). This casting out produces some bodies as irrelevant to social and economic life, resulting in segregation and isolation. To misfit, she argues, is to be denied full citizenship. Responsibilising the Present Garland Thomson, discussing Bynum’s statement that “shape carries story”, argues the following: “the idea that shape carries story suggests … that material bodies are not only in the spaces of the world but that they are entwined with temporality as well” (596). In this section, I discuss how participants described their decisions to get weight loss surgery by making references to the need take responsibility for health now, in the present, in order to avoid further and future morbidity and mortality. Following Adams et al., I look at how the fat body is lived in a state of constant anticipation – “thinking and living toward the future” (246). All of the participants I spoke with described long histories of weight cycling. While many managed to lose weight, none were able to maintain this weight loss in the long term – a reality consistent with the medical fact that dieting does not produce durable results (Kassirer and Angell; Mann et al.; Puhl and Heuer). They experienced this inability as not only distressing, but terrifying, as they repeatedly regained the lost weight plus more. When participants discussed their decisions to have surgery, they highlighted concerns about weight related comorbidities and mobility limitations in their explanations. Consistent then with Boero, Lopez, and Wadden et al., the participants I spoke with did not seek out surgery in hopes of finding a permanent way to become thin, but rather a permanent way to become healthy and normal. Concerns about what is considered to be normative health, more than simply concerns about what is held to be an appropriate appearance, motivated their decisions. Significantly, for these participants the decision to have bariatric surgery was based on concerns about future morbidity (and mortality) at least as much, if not more so, than on concerns about a current state of ill health and impairment. Some individuals I spoke with were unquestionably suffering from multiple chronic and even life threatening illnesses and feared they would prematurely die from these conditions. Other participants, however, made the decision to have bariatric surgery despite the fact that they had no comorbidities whatsoever. Motivating their decisions was the fear that they would eventually develop them. Importantly, medial providers explicitly and repeatedly told all of these participants that lest they take drastic and immediate action, they would die. For example: Faith’s reproductive endocrinologist said: “you’re going to have diabetes by the time you’re 30; you’re going to have a stroke by the time you’re 40. And I can only hope that you can recover enough from your stroke that you’ll be able to take care of your family.” Several female participants were warned that without losing weight, they would either never become pregnant or they would die in childbirth. By contrast, participants stated that their bariatric surgeons were the first providers they had encountered to both assert that obesity was a medical condition outside of their control and to offer them a solution. Within an atmosphere in which obesity is held to be largely or entirely the result of behavioural choices, the bariatric profession thus positions itself as unique by offering both understanding and what it claims to be a durable treatment. Importantly, it would be a mistake to conclude that some bariatric patients needed surgery while others choose it for the wrong reasons. Regardless of their states of health at the time they made the decision to have surgery, the concerns that drove these patients to seek out these procedures were experienced as very real. Whether or not these concerns would have materialized as actual health conditions is unknown. Furthermore, bariatric patients should not be seen as having been duped or suffering from ‘false consciousness.’ Rather, they operate within a particular set of social, cultural, and political-economic conditions that suggest that good citizenship requires risk avoidance and personal health management. As these individuals experienced, there are material and social consequences for ‘failing’ to obtain normative conceptualizations of health. This set of conditions helps to produce a bariatric patient population that includes both those who were contending with serious health concerns and those who feared they would develop them. All bariatric patients operate within this set of conditions (as do medical providers) and make decisions regarding health (current, future, or both) by using the resources available to them. In her work on the temporalities of dieting, Coleman argues that rather than seeing dieting as a linear and progressive event, we might think of it instead a process that brings the future into the present as potential. Adams et al suggest concerns about potential futures, particularly in regard to health, are a defining characteristic of our time. They state: “The present is governed, at almost every scale, as if the future is what matters most. Anticipatory modes enable the production of possible futures that are lived and felt as inevitable in the present, rendering hope and fear as important political vectors” (249). The ability to act in the present based on potential future risks, they argue, has become a moral imperative and a marker of proper of citizenship. Importantly, however, our work to secure the ‘best possible future’ is never fully assured, as risks are constantly changing. The future is thus always uncertain. Acting responsibly in the present therefore requires “alertness and vigilance as normative affective states” (254). Importantly, these anticipations are not diagnostic, but productive. As Adams et al state, “the future arrives already formed in the present, as if the emergency has already happened…a ‘sense’ of the simultaneous uncertainty and inevitability of the future, usually manifest in entanglements of fear and hope” (250). It is in this light, then, that we might see the decision to have bariatric surgery. For these participants, their future weight-related morbidity and mortality had already arrived in the present and thus they felt they needed to act responsibly now, by undergoing what they had been told was the only durable medical intervention for obesity. The emotions of hope, fear, anxiety and I would suggest, hatred, were key in making these decisions. Conclusion Medical, public health, and media discourses frame obesity as an epidemic that threatens to bring untold financial disaster and escalating rates of morbidity and mortality upon the nation state and the world at large. As Fraser et al argue, strong emotions (such hatred, fear, anxiety, and hope), are at the centre of these discourses; they construct, circulate, and proliferate them. Moreover, they create categories of people who are deemed legitimate and categories of others who are not. In this context, the participants I spoke with were caught between a desire to have fatness understood as a medical condition needing intervention; the anti-fat attitudes of others, including providers, which held that obesity was a failure of the will and nothing more; their own internalization of these messages of personal responsibility for proper behavioural choices, and, the biologically intractable nature of fatness wherein dieting not only fails to reduce weight in the vast majority of cases but results, in the long term, in increased weight gain (Kassirer and Angell; Mann et al.; Puhl and Heuer). Widespread anxiety and embarrassment over and fear and hatred of fatness was something that the individuals I interviewed experienced directly and which signalled to them that they were less than human. Their desire for weight loss, therefore was partially a desire to become ‘normal.’ In Butler’s term, it was the desire for a ‘liveable life. ’A liveable life, for these participants, included a desire for a seamless fit with the built environment. The individuals I spoke with were never more ashamed of their fatness than when they experienced a ‘misfit’, in Garland Thomson’s terms, between their bodies and the material world. Moreover, feelings of shame over this disjuncture worked in tandem with a deeply felt, pressing sense that something must be done in the present to secure a better health future. The belief that bariatric surgery might finally provide a durable answer to obesity served as a strong motivating factor in their decisions to undergo bariatric surgery. By taking drastic action to lose weight, participants hoped to contest stigmatizing beliefs that their fat bodies reflected pathological interiors. Moreover, they sought to demonstrate responsibility and thus secure proper subjectivities and citizenship. In this sense, concerns, anxieties, and fears about health cannot be disentangled from the experience of anti-fat stigma and discrimination. Again, anti-fat bias, for these participants, was more than discursive: it operated through the circulation of emotion and was experienced in a very material sense. The decision to have weight loss surgery can thus be seen as occurring at the interface of emotion, flesh, space, place, and time, and in ways that are fundamentally shaped by the broader social context of neoliberal healthism. AcknowledgmentI am grateful to the anonymous reviewers of this article for their helpful feedback on earlier version. References Adams, Vincanne, Michelle Murphy, and Adele E. Clarke. “Anticipation: Technoscience, Life, Affect, Temporality.” Subjectivity 28.1 (2009): 246-265. 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Abstract:

IntroductionIn Britain, hunger is often hidden in the privacy of the home. Yet otherwise private hunger is currently being rendered public and visible in the growing queues at charity-run food banks, where emergency food parcels are distributed directly to those who cannot afford to feed themselves or their families adequately (Downing et al.; Caplan). Food banks, in providing emergency relief to those in need, are responses to crisis moments, actualised through an embodied feeling of hunger that cannot be alleviated. The growing queues at food banks not only render hidden hunger visible, but also serve as reminders of the corporeal vulnerability of the human body to political and socio-economic shifts.A consideration of corporeality allows us to view the world through the lived experiences of the body. Human beings are “creatures of the flesh” who understand and reason, act and interact with their environments through the body (Johnson 81). The growing academic interest in corporeality signifies what Judith Butler calls a “new bodily ontology” (2). However, as Butler highlights, the body is also vulnerable to injury and suffering. An application of this ontology to hunger draws attention to eating as essential to life, so the denial of food poses an existential threat to health and ultimately to survival. The body’s response to threat is the physiological experience of hunger as a craving or longing that is the “most bodily experience of need […] a visceral desire locatable in a void” in which an empty stomach “initiates” a series of sounds and pangs that “call for action” in the form of eating (Anderson 27). Food bank queues serve as visible public reminders of this precariousness and of how social conditions can limit the ability of individuals to feed themselves, and so respond to an existential threat.Corporeal vulnerability made visible elicits responses that support societal interventions to feed the hungry, or that stigmatise hungry people by withdrawing or disparaging what limited support is available. Responses to vulnerability therefore evoke nurture and care or violence and abuse, and so in this sense are ambiguous (Butler; Cavarero). The responses are also normative, shaped by social and cultural understandings of what hunger is, what its causes are, and whether it is seen as originating in personal or societal failings. The stigmatising of individuals by blaming them for their hunger is closely allied to the feelings of shame that lie at the “irreducible absolutist core” of the idea of poverty (Sen 159). Shame is where the “internally felt inadequacies” of the impoverished individual and the “externally inflicted judgments” of society about the hungry body come together in a “co-construction of shame” (Walker et al. 5) that is a key part of the lived experience of hunger. The experience of shame, while common, is far from inevitable and is open to resistance (see Pickett; Foucault); shame can be subverted, turned from the hungry body and onto the society that allows hunger to happen. Who and what are deemed responsible are shaped by shifting ideas and contested understandings of hunger at a particular moment in time (Vernon).This exploration of corporeal vulnerability through food banks as a historically located response to hunger offers an alternative to studies which privilege representations, objectifying the body and “treating it as a discursive, textual, iconographic and metaphorical reality” while neglecting understandings derived from lived experiences and the responses that visible vulnerabilities elicit (Hamilakis 99). The argument made in this paper calls for a critical reconsideration of classic political economy approaches that view hunger in terms of a class struggle against the material conditions that give rise to it, and responses that ultimately led to the construction of the welfare state (Vernon). These political economy approaches, in focusing on the structures that lead to hunger and that respond to it, are more closed than Butler’s notion of ambiguous and constantly changing social responses to corporeal vulnerability. This paper also challenges the dominant tradition of nutrition science, which medicalises hunger. While nutrition science usefully draws attention to the physiological experiences and existential threat posed by acute hunger, the scientific focus on the “anatomical functioning” of the body and the optimising of survival problematically separates eating from the social contexts in which hunger is experienced (Lupton 11, 12; Abbots and Lavis). The focus in this article on the corporeal vulnerability of hunger interweaves contested representations of, and ideas about, hunger with the physiological experience of it, the material conditions that shape it, and the lived experiences of deprivation. Food banks offer a lens onto these experiences and their complexities.Food Banks: Deprivation Made VisibleSince the 1980s, food banks have become the fastest growing charitable organisations in the wealthiest countries of North America, Europe, and Australasia (Riches), but in Britain they are a recent phenomenon. The first opened in 2000, and by 2014, the largest operator, the Trussell Trust, had over 420 franchised food banks, and more recently was opening more than one per week (Lambie-Mumford et al.; Lambie-Mumford and Dowler). British food banks hand out emergency food relief directly to those who cannot afford to feed themselves or their families adequately, and have become new sites where deprivation is materialised through a congregation of hungry people and the distribution of food parcels. The food relief parcels are intended as short-term immediate responses to crisis moments felt within the body when the individual cannot alleviate hunger through their own resources; they are for “emergency use only” to ameliorate individual crisis and acute vulnerability, and are not intended as long-term solutions to sustained, chronic poverty (Perry et al.). The need for food banks has emerged with the continued shrinkage of the welfare state, which for the past half century sought to mediate the impact of changing individual and social circ*mstances on those deemed to be most vulnerable to the vicissitudes of life. The proliferation of food banks since the 2009 financial crisis and the increased public discourse about them has normalised their presence and naturalised their role in alleviating acute food poverty (Perry et al.).Media images of food bank queues and stacks of tins waiting to be handed out (Glaze; Gore) evoke collective memories from the early twentieth century of hunger marches in protest at government inaction over poverty, long queues at soup kitchens, and the faces of gaunt, unemployed war veterans (Vernon). After the Second World War, the spectre of communism and the expansionist agenda of the Soviet Union meant such images of hunger could become tools in a propaganda war constructed around the failure of the British state to care for its citizens (Field; Clarke et al; Vernon). The 1945 Labour government, elected on a social democratic agenda of reform in an era of food rationing, responded with a “war on want” based on the normative premise that no one should be without food, medical care, shelter, warmth or work. Labour’s response was the construction of the modern welfare state.The welfare state signified a major shift in ideational understandings of hunger. In the seventeenth and eighteenth centuries, ideas about hunger had been rooted in a moralistic account of divine punishment for individual failure (Vernon). Bodily experiences of hunger were seen as instruments for disciplining the indigent into a work ethic appropriate for a modern industrialised economy. The infamous workhouses, finally abolished in 1948, were key sites of deprivation where restrictions on how much food was distributed served to punish or discipline the hungry body into compliance with the dominant work ethic (Vernon; Foucault). However, these ideas shifted in the second half of the nineteenth century as the hungry citizen in Britain (if not in its colonies) was increasingly viewed as a victim of wider forces beyond the control of the individual, and the notion of disciplining the hungry body in workhouses was seen as reprehensible. A humanitarian treatment of hunger replaced a disciplinarian one as a more appropriate response to acute need (Shaw; Vernon). Charitable and reformist organisations proliferated with an agenda to feed, clothe, house, and campaign on behalf of those most deprived, and civil society largely assumed responsibility for those unable to feed themselves. By the early 1900s, ideas about hunger had begun to shift again, and after the Second World War ideational changes were formalised in the welfare state, premised on a view of hunger as due to structural rather than individual failure, hence the need for state intervention encapsulated in the “cradle to grave” mantra of the welfare state, i.e. of consistent care at the point of need for all citizens for their lifetime (see Clarke and Newman; Field; Powell). In this context, the suggestion that Britons could go to bed hungry because they could not afford to feed themselves would be seen as the failure of the “war on want” and of an advanced modern democracy to fulfil its responsibilities for the welfare of its citizens.Since the 1980s, there has been a retreat from these ideas. Successive governments have sought to rein in, reinvent or shrink what they have perceived as a “bloated” welfare state. In their view this has incentivised “dependency” by providing benefits so generous that the supposedly work-shy or “skivers” have no need to seek employment and can fund a diet of takeaways and luxury televisions (Howarth). These stigmatising ideas have, since the 2009 financial crisis and the 2010 election, become more entrenched as the Conservative-led government has sought to renew a neo-liberal agenda to shrink the welfare state, and legitimise a new mantra of austerity. This mantra is premised on the idea that the state can no longer afford the bloated welfare budget, that responsible government needs to “wean” people off benefits, and that sanctions imposed for not seeking work or for incorrectly filling in benefit claim forms serve to “encourage” people into work. Critics counter-argue that the punitive nature of sanctions has exacerbated deprivation and contributed to the growing use of food banks, a view the government disputes (Howarth; Caplan).Food Banks as Sites of Vulnerable CorporealityIn these shifting contexts, food banks have proliferated not only as sites of deprivation but also as sites of vulnerable corporeality, where people unable to draw on individual resources to respond to hunger congregate in search of social and material support. As growing numbers of people in Britain find themselves in this situation, the vulnerable corporeality of the hungry body becomes more pervasive and more visible. Hunger as a lived experience is laid bare in ever-longer food bank queues and also through the physiological, emotional and social consequences graphically described in personal blogs and in the testimonies of food bank users.Blogger Jack Monroe, for example, has recounted giving what little food she had to her child and going to bed hungry with a pot of ginger tea to “ease the stomach pains”; saying to her curious child “I’m not hungry,” while “the rumblings of my stomach call me a liar” (Monroe, Hunger Hurts). She has also written that her recourse to food banks started with the “terrifying and humiliating” admission that “you cannot afford to feed your child” and has expressed her reluctance to solicit the help of the food bank because “it feels like begging” (Monroe, Austerity Works?). Such blog accounts are corroborated in reports by food bank operators and a parliamentary enquiry which told stories of mothers not eating for days after being sanctioned under the benefit system; of children going to school hungry; of people leaving hospital after a major operation unable to feed themselves since their benefits have been cut; of the elderly having to make “hard choices” between “heat or eat” each winter; and of mixed feelings of relief and shame at receiving food bank parcels (All-Party Parliamentary Inquiry; Beattie; Cooper and Dumpleton; Caplan; Perry et al.). That is, two different visibilities have emerged: the shame of standing or being seen to stand in the food bank queue, and blogs that describe these feelings and the lived experience of hunger – both are vulnerable and visible, but in different ways and in different spaces: the physical or material, and the virtual.The response of doctors to the growing evidence of crisis was to warn that there were “all the signs of a public health emergency that could go unrecognised until it is too late to take preventative action,” that progress made against food poverty since the 1960s was being eroded (Ashton et al. 1631), and that the “robust last line of defence against hunger” provided by the welfare state was failing (Loopstra et al. n.p). Medical professionals thus sought to conscript the rhetorical resources of their professional credibility to highlight that this is a politically created public health crisis.This is not to suggest that acute hunger was absent for 50 years of the welfare state, but that with the closure of the last workhouses, the end of hunger marches, and the shutting of the soup kitchens by the 1950s, it became less visible. Over the past decade, hunger has become more visible in images of growing queues at food banks and stacked tins ready to be handed out by volunteers (Glaze; Gore) on production of a voucher provided on referral by professionals. Doctors, social workers or teachers are therefore tasked with discerning cases of need, deciding whose need is “genuine” and so worthy of food relief (see Downing et al.). The voucher system is regulated by professionals so that food banks are open only to those with a public identity constructed around bodily crisis. The sense of something as intimate as hunger being defined by others contrasts to making visible one’s own hunger through blogging. It suggests again how bodies become caught up in wider political struggles where not only is shame a co-construction of internal inadequacies and external judgements, but so too is hunger, albeit in different yet interweaving ways. New boundaries are being established between those who are deprived and those who are not, and also between those whose bodies are in short-term acute crisis, and those whose bodies are in long-term and chronic crisis, which is not deemed to be an emergency. It is in this context that food banks have also become sites of demarcation, shame, and contestation.Public debates about growing food bank queues highlight the ambiguous nature of societal responses to the vulnerability of hunger made visible. Government ministers have intensified internal shame in attributing growing food bank queues to individual inadequacies, failure to manage household budgets (Gove), and profligate spending on luxury (Johnston; Shipton). Civil society organisations have contested this account of hunger, turning shame away from the individual and onto the government. Austerity reforms have, they argue, “torn apart” the “basic safety net” of social responses to corporeal vulnerability put in place after the Second World War and intended to ensure that no-one was left hungry or destitute (Bingham), their vulnerability unattended to. Furthermore, the benefit sanctions impose punitive measures that leave families with “nothing” to live on for weeks. Hungry citizens, confronted with their own corporeal vulnerability and little choice but to seek relief from food banks, echo the Dickensian era of the workhouse (Cooper and Dumpleton) and indict the UK government response to poverty. Church leaders have called on the government to exercise “moral duty” and recognise the “acute moral imperative to act” to alleviate the suffering of the hungry body (Beattie; see also Bingham), and respond ethically to corporeal vulnerability with social policies that address unmet need for food. However, future cuts to welfare benefits mean the need for relief is likely to intensify.ConclusionThe aim of this paper was to explore the vulnerable corporeality of hunger through the lens of food banks, the twenty-first-century manifestations of charitable responses to acute need. Food banks have emerged in a gap between the renewal of a neo-liberal agenda of prudent government spending and the retreat of the welfare state, between struggles over resurgent ideas about individual responsibility and deep disquiet about wider social responsibilities. Food banks as sites of deprivation, in drawing attention to a newly vulnerable corporeality, potentially pose a threat to the moral credibility of the neo-liberal state. The threat is highlighted when the taboo of a hungry body, previously hidden because of shame, is being challenged by two new visibilities, that of food bank queues and the commentaries on blogs about the shame of having to queue for food.ReferencesAbbots, Emma-Jayne, and Anna Lavis. Eds. Why We Eat, How We Eat: Contemporary Encounters between Foods and Bodies. Farnham: Ashgate, 2013.All-Party Parliamentary Inquiry. “Feeding Britain.” 2014. 6 Jan. 2016 <https://foodpovertyinquiry.files.wordpress.com/2014/12/food>.Anderson, Patrick. “So Much Wasted:” Hunger, Performance, and the Morbidity of Resistance. Durham: Duke UP, 2010.Ashton, John R., John Middleton, and Tim Lang. “Open Letter to Prime Minister David Cameron on Food Poverty in the UK.” The Lancet 383.9929 (2014): 1631.Beattie, Jason. “27 Bishops Slam David Cameron’s Welfare Reforms as Creating a National Crisis in Unprecedented Attack.” Mirror 19 Feb. 2014. 6 Jan. 2016 <http://www.mirror.co.uk/news/uk-news/27-bishops-slam-david-camerons-3164033>.Bingham, John. “New Cardinal Vincent Nichols: Welfare Cuts ‘Frankly a Disgrace.’” Telegraph 14 Feb. 2014. 6 Jan. 2016 <http://www.telegraph.co.uk/news/religion/10639015/>.Butler, Judith. Frames of War: When Is Life Grievable? London: Verso, 2009.Cameron, David. “Why the Archbishop of Westminster Is Wrong about Welfare.” The Telegraph 18 Feb. 2014. 6 Jan. 2016 <http://www.telegraph.co.uk/news/politics/david-cameron/106464>.Caplan, Pat. “Big Society or Broken Society?” Anthropology Today 32.1 (2016): 5–9.Cavarero, Adriana. Horrorism: Naming Contemporary Violence. New York: Columbia UP, 2010.Chase, Elaine, and Robert Walker. “The Co-Construction of Shame in the Context of Poverty: Beyond a Threat to the Social Bond.” Sociology 47.4 (2013): 739–754.Clarke, John, Sharon Gewirtz, and Eugene McLaughlin (eds.). New Managerialism, New Welfare. London: Sage, 2000.Clarke, John, and Janet Newman. The Managerial State: Power, Politics and Ideology in the Remaking of Social Welfare. London: Sage, 1997.Cooper, Niall, and Sarah Dumpleton. “Walking the Breadline.” Church Action on Poverty/Oxfam May (2013): 1–20. 6 Jan. 2016 <http://policy-practice.oxfam.org.uk/publications/walking-the-breadline-the-scandal-of-food-poverty-in-21st-century-britain-292978>.Crossley, Nick. “The Politics of the Gaze: Between Foucault and Merleau-Ponty.” Human Studies 16.4 (1996): 399–419.Downing, Emma, Steven Kennedy, and Mike Fell. Food Banks and Food Poverty. London: House of Commons, 2014. 6 Jan. 2016 <http://www.parliament.uk/briefing-papers/SN06657/food-banks-and-food-poverty>.Field, Frank. “The Welfare State – Never Ending Reform.” BBC 3 Oct. 2011. 6 Jan. 2016 <http://www.bbc.co.uk/history/british/modern/field_01.shtml>.Foucault, Michel. Madness and Civilization: A History of Insanity in an Age of Reason. Trans. Richard Howard. New York: Random House, 1996.Glaze, Ben. “Tens of Thousands of Families Will Only Eat This Christmas Thanks to Food Banks.” The Mirror 23 Dec. 2015. 6 Jan. 2016 <http://www.mirror.co.uk/news/uk-news/tens-thousands-families-only-eat-705>.Gore, Alex. “Schools Teach Cookery on Fridays So Hungry Children from Families Too Poor to Eat Have Food for the Weekend.” The Daily Mail 28 Oct. 2012. 6 Jan. 2016. <http://www.dailymail.co.uk/news/article-2224304/Schools-teach-cookery-Friday>.Gove, Michael. “Education: Topical Questions.” Oral Answers to Questions 2 Sep. 2013.Hamilakis, Yannis. “Experience and Corporeality: Introduction.” Thinking through the Body: Archaeologies of Corporeality. Eds. Yannis Hamilakis, Mark Pluciennik, and Sarah Tarlow. New York: Kluwer Academic, 2002. 99-105.Howarth, Anita. “Hunger Hurts: The Politicization of an Austerity Food Blog.” International Journal of E-Politics 6.3 (2015): 13–26.Johnson, Mark. “Human Beings.” The Journal of Philosophy LXXXIV.2 (1987): 59–83.Johnston, Lucy. “Edwina Currie’s Cruel Jibe at the Poor.” Sunday Express Jan. 2014. 6 Jan. 2016 <http://www.express.co.uk/news/uk/454730/Edwina-Currie-s-cruel-jibe-at-poor>.Lambie-Mumford, Hannah, Daniel Crossley, and Eric Jensen. Household Food Security in the UK: A Review of Food Aid Final Report. February 2014. Food Ethics Council and the University of Warwick. 6 Jan. 2016 <https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/283071/household-food-security-uk-140219.pdf>.Lambie-Mumford, Hannah, and Elizabeth Dowler. “Rising Use of ‘Food Aid’ in the United Kingdom.” British Food Journal 116 (2014): 1418–1425.Loopstra, Rachel, Aaron Reeves, David Taylor-Robinson, Ben Barr, Martin McKee, and David Stuckler. “Austerity, Sanctions, and the Rise of Food Banks in the UK.” BMJ 350 (2015).Lupton, Deborah. Food, the Body and the Self. London: Sage, 1996.Monroe, Jack. “Hunger Hurts.” A Girl Called Jack 30 July 2012. 6 Jan. 2016 <http://agirlcalledjack.com/2012/07/30/hunger-hurts/>.———. “Austerity Works? We Need to Keep Making Noise about Why It Doesn’t.” Guardian 10 Sep. 2013. 6 Jan. 2016 <http://www.theguardian.com/commentisfree/2013/sep/10/austerity-poverty-frugality-jack-monroe>.Perry, Jane, Martin Williams, Tom Sefton and Moussa Haddad. “Emergency Use Only: Understanding and Reducing the Use of Food Banks in the UK.” Child Poverty Action Group, The Church of England, Oxfam and The Trussell Trust. Nov. 2014. 6 Jan. 2016 <http://www.cpag.org.uk/sites/default/files/Foodbank Report_web.pdf>.Pickett, Brent. “Foucault and the Politics of Resistance.” Polity 28.4 (1996): 445–466.Powell, Martin. “New Labour and the Third Way in the British Welfare State: A New and Distinctive Approach?” Critical Social Policy 20.1 (2000): 39–60. Riches, Graham. “Food Banks and Food Security: Welfare Reform, Human Rights and Social Policy: Lessons from Canada?” Social Policy and Administration 36.6 (2002): 648–663.Sen, Amartya. “Poor, Relatively Speaking.” Oxford Economic Papers 35.2 (1983): 153–169. Shaw, Caroline. Britannia’s Embrace: Modern Humanitarianism and the Imperial Origins of Refugee Relief. Oxford: Oxford UP, 2015.Shipton, Martin. “Vale of Glamorgan MP Alun Cairns in Food Bank Row after Claims Drug Addicts Use Them.” Wales Online Sep. 2015. 6 Jan. 2016. <http://www.walesonline.co.uk/news/wales-news/vale-glamorgan-tory-mp-alun-6060730>. Vernon, James. Hunger: A Modern History. Cambridge, MA: Harvard UP, 2009.Walker, Robert, Sarah Purcell, and Ruth Jackson “Poverty in Global Perspective: Is Shame a Common Denominator?” Journal of Social Policy 42.02 (2013): 215–233.

Abstract:

"And then I ask the question, 'How long have you been doing this?' And it says, 'That knowledge isn't given to you.' And I say, 'Jesus Christ, will you answer a question for the love of God? How long have you been doing this, and stop with those stupid answers.' I'm so pissed off at it. And it sort of just smiles and doesn't answer. And I say, 'Have you been doing this forever?' I don't think it understands forever. And then I ask what it's doing. 'What are you doing?' It wants me to give it my mind, and then it will show me what it's doing. I say, 'No dice, I don't care that much. No thanks, I'm not interested.' It says, 'Why are you afraid? Why are you worried? Don't be afraid.' All the same bullsh*t that it always wants to give you." -- Abductee 'Karen Morgan', interviewed in David Jacobs's Secret Life "We should learn to live by learning how not to make conversation with the ghost but how to talk with him, with her, how to let them speak or how to give them back speech, even if it is in oneself, in the other, in the other in oneself: they are always there, spectres, even if they do not exist, even if they are no longer, even if they are not yet." -- Jacques Derrida, Spectres of Marx Hundreds of people from all around the world are reporting being abducted by apparently alien beings, taken aboard a UFO or into a profoundly unfamiliar environment, and subjected to bizarre reproductive procedures and quasi-medical examinations. It's usually called alien abduction, and it's becoming increasingly common in western society. Official culture (academics, government, scientific institutions, etc.) have been very slow to acknowledge that anything at all is happening, overlooking the clear implication that even if a lot of people aren't reporting actual experience, that a lot of people believe they are reporting actual experience. The source of this apparent lack of official interest may lie in the undesirability of transgressing the superficial sensationalism that belies the phenomenon's apparent complexity. But what seems unavoidable is the implication that alien abduction represents an unprecedented sociological and psychological phenomenon. Predominantly obfuscating investigation of alien abduction is the absence of a clear mode of approach. The most obvious (and common) place to begin is with the question "is alien abduction real?" -- which quickly proves unproductive, essentially because its premises aren't appropriate. Firstly, it assumes that current definitions of 'real' are both stable and applicable to a hypothetically alien phenomenon. Alien abduction is also commonly deemed impossible a priori; in other words, it's not happening because we 'know' it can't. (Note: this premise embarrassed many French astronomers who for decades, despite villagers' reports, maintained that 'rocks could not fall from the sky'. We now know, despite the astronomers' arrogance, that meteorites do exist.) This is an effect of the dominant ontology -- literally, a reality constructed and reinforced by a minority of powerful members of a culture. Phenomena which threaten the most basic ontological, epistemological and existential premises of this minority are marginalised as tabloid, suppressed, or simply ignored in its hegemonic efforts to maintain power. Secondly, asking if alien abduction is real bypasses the highly problematic trait that connects virtually all abduction cases: the bulk of evidence is in the form of abductees' memories. Roughly 30% of abductions are remembered without the use of hypnosis, and 70% are 'recovered' memories of 'missing time'. (McLeod et al. 156) Most abduction experiences seem to involve complete, or almost complete, erasure of memory of the event. (see Hopkins, Missing Time). Memory itself thus becomes heavily problematised, and no longer reliable. Abduction (if we take any notice of it) causes us to doubt the reality of events that our memories are capable of providing for our perusal, since abductees remember, often very clearly, events which as a culture we generally consider impossible. Conversely, and most provocatively, alien abduction causes us to question the assumed fantasy of events that our memories contain. Vivid dreams are potential abduction experiences. As a society we may stubbornly assume the role of the French astronomers and tell abductees that they are not remembering experience, that their memories are 'false' or have been implanted by hypnotists predisposed to the alien hypothesis. But the abductees, and their memories, do not go away. A conceptualisation of memory that is capable of dealing with alien abduction phenomena should begin by observing that the memorial is intimately linked with the imaginative. It is the retained impression of experience, which is a convergence of imagination (creative thought) and perception (reception of sensory stimuli). Without memory, without the ability to recognise patterns, 'experience' -- meaningful perception -- would not be possible. Experience then, upon which we rely totally to formulate reality, is not possible without memory and imagination. Reality does influence imagination, and vice versa. But imagination is more powerful at the end of the day, since it is always imagination that changes reality. Put simply, discovery is invention. The earth only orbits the sun because enough people imagine (or think or believe) that it does. It only became possible to imagine that the earth orbits the sun, as opposed to the sun orbiting the earth, because of changes that occurred within the culture. Knowledge, despite its claims of universality, is always cultural. The experiences that produce knowledge are always never more than what a culture will allow, can allow. Cultural practice, including the production of knowledge, is and inevitably must be, a restrictive practice. The emergence of postmodern thought is essentially what has allowed an alien abduction phenomenon to begin an existence. Conceptual boundaries which have traditionally precluded such a phenomenon are now being attacked and acknowledged as cultural and therefore subject to change. Postmodern society recognises and appreciates the plasticity and constant change of reality and knowledge, and stresses the priority of concrete experience over fixed abstract principles (Tarnas 395). At its deepest level, alien abduction exposes the arbitrary nature of the reality/non-reality duality, since abduction experiences seem to involve something from non-reality/immateriality (alien beings that walk through walls) entering reality/materiality (its aftereffects are observed in the physical world). Importantly, people are affected not so much by their experience of alien abduction (which are usually forgotten), but by their memories of alien abduction. John E. Mack suggests as a response to this that our use of familiar words like 'happening', 'occurred' and 'real' will themselves have to be thought of differently, and less literally (405). What would have once been interpreted as an inclination towards fantasy, realistic dreams or simply insanity now has the potential to become something more. The memories that so many people are now reporting are not seen as merely memories of dreams, memories of fantasies or memories of episodes of insanity. They are seen as memories of experiences that bridge an objective/subjective dichotomy. They are memories of events that persistently evade complete detection and leave only enough traces in the physical world -- the odd anomalous scar or lesion, and distraught abductees -- to imply that something is happening. But the aliens never land on the White House lawn. Most significantly of all, alien abduction particularly involves that ambiguous bridge between reality and non-reality, perception and imagination -- memory. Memory is the true realm of alien abduction, and we will be forever frustrated if we try to transfer it neatly into other conceptual realms such as 'reality' or 'non-reality', 'perception' or 'imagination'. Alien abduction, like memory, just won't fit into them. It is the hybrid of perception and imagination, the convergence of reality and non-reality, resulting from the privileging of imagination over perception in the formulation of experience. It is the ultimate postmodern myth. References Derrida, Jacques. Spectres of Marx: The State of the Debt, the Work of Mourning, and the New International. London: Routledge, 1994. Harpur, Patrick. Diamonic Reality: Understanding Otherwordly Encounters. London: Penguin, 1994. Hopkins, Budd. Missing Time. New York: Ballantine, 1981. Jacobs, David M. Secret Life: Firsthand Documented Accounts of UFO Abductions. New York: Simon and Schuster, 1992. Mack, John E. Abduction: Human Encounters with Aliens. London: Simon and Schuster, 1995. McLeod, Caroline C., Barbara Corbisier, and John E. Mack. "A More Parsimonious Explanation for UFO Abduction." Psychological Inquiry 7.2 (1996): 156-168. Tarnas, Richard. The Passion of the Western Mind: Understanding the Ideas That Have Shaped Our World View. New York: Ballantine, 1991. Thompson, Keith. Angels and Aliens: UFOs and the Mythic Imagination. New York: 1993. Citation reference for this article MLA style: Adam Dodd. "'What Happened?' Deconstructing Memories of Alien Abduction." M/C: A Journal of Media and Culture 1.2 (1998). <http://www.uq.edu.au/mc/9808/alien.php>. Chicago style: Adam Dodd, "'What Happened?' Deconstructing Memories of Alien Abduction," M/C: A Journal of Media and Culture 1, no. 2 (1998), <http://www.uq.edu.au/mc/9808/alien.php>. APA style: Adam Dodd. (1998) "What happened?" Deconstructing memories of alien abduction. M/C: A Journal of Media and Culture 1(2). <http://www.uq.edu.au/mc/9808/alien.php> ([your date of access]).

Abstract:

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

Abstract:

Introduction Although our postmodern (media) society should provide room for diversity and otherness (Greer and Jewkes), some people are not integrated but rather excluded. Social exclusion can be defined as the discrepancy of the wish of being part of a society and its possibilities to be part of it and contains feelings or experiences of physically or emotionally exclusion from others (Burchardt et al.; Riva and Eck). It is not really known what or who is responsible for social exclusion (Hills et al.), but it is certain that it is not that rare phenomenon — especially in social media. Here, digital engagement characteristics (likes, follows, shares, and comments) are important to build up, renew, and strengthen different forms of relationships. But if users do not receive any feedback, the risk of feeling social excluded increases. In this context, adolescents and young adults as the primary audience are the focus of interest. They seem to be especially vulnerable when it comes to social ostracism within social media and its potential negative psychological effects (Timeo et al.). The variety of social exclusion allows multiple perspectives on the topic. Hereafter we focus on young people with cancer. This life-threatening disease can increase the risk of being excluded. Cancer as a chronic illness and its negative effects on people’s lives, such as potential death, long-term and late effects, private and social burdens (Hilgendorf et al.), show an obvious otherness compared to the healthy peer, which might push ostracism effects and social exclusion of young people within social media to a new level. We actually can see a large number of (included) young cancer patients and survivors using social media for information sharing, exchanging ideas, networking, and addressing their unmet needs of the real world (Chou et al.; Chou and Moskowitz; Ruckenstuhl et al.; Perales et al.). Especially Instagram is becoming more present in social cancer communication (Stage et al.), though it actually increasingly represents cheerful, easy-going content (Hu et al.; Waterloo et al.). Judging by the number of cancer-related hashtags, we can see more and more public cancer bloggers thematise cancer illness on Instagram. But less is known about the actual content posted by cancer bloggers on Instagram. This leads us to the question, to what extent is cancer content found and included or excluded on public Instagram profiles of German speaking cancer bloggers? And is there a difference between biography descriptions with visible cancer references and posted motifs, captions and hashtags? Chronic Illnesses, Identities, and Social Networks Chronic illnesses such as cancer not only affect the body, but also impact on the identity of those affected. It is understood as life-changing with both short-term and long-term effects on the identity-forming process and on the already developed identity (Bury; Charmaz; Leventhal et al.). With their diagnosis, adolescents and young adults face a double challenge: they have to cope with the typical developmental changes of this age group and they have to negotiate these changes against the background of a life-threatening illness (Makros and McCabe; Zebrack and Isaacso). Miller shows three levels of identity for young cancer patients (pre-cancer identity, patient identity, and post-cancer identity), which are used regularly and flexibly by those affected in their interaction with the social network in order to maintain relationships and to minimise communicative misunderstandings. Moreover, the negotiation of the self within the social network and its expectations, especially towards convalescent people, can lead to paradoxical situations and identities of young people with cancer (Jones et al.). Although therapeutic measures are completed and patients may be discharged as cured, physical, cognitive, and emotional challenges with regard to the illness (e.g. fatigue, loss of performance, difficulty concentrating) still have to be overcome. These challenges, despite recovery, cause those affected to feel they still belong to a cancer group which they have actually largely outgrown medically and therapeutically, and also continually remind them of their present difference from the healthy peer group. To minimise these differences, narratives are the means for those affected to negotiate their new illness-related identity with their network (Hyde). These processes can be digitally transformed on blogs or to age-appropriate social network sites (SNS), which enable users to record and communicate experiences and emotions in an uncomplicated, situational manner and with fewer inhibitions (Kim and Gilham). Cancer contents on SNS are called autopathography and can serve as a means of self-expression, whilst at the same time stimulating communication and networking and thus significantly influencing identity and identity development in the chronic disease process (Rettberg; Ressler et al.; Abrol et al.; Stage). The possibility of recording and archiving private moments in a digital environment through photos and texts creates a visual diary. Here, illness recordings are not just motifs, but also part of an identity process by accepting the self as being ill (Nesby and Salamonsen; Tembeck). Instagram-Exclusive Positivity Instagram is the most popular social media network amongst 14-29 year olds in Germany (Beisch et al.). It presents itself as a highly visual structured platform. Furthermore, both posts and stories are dominated by content with innocuous motifs (Hu et al.). Additionally, the visual culture on Instagram is supported by integrated image optimisations such as filters and therefore often associated with high aesthetic standards (Waterloo et al.). This encourages the exchange of idealised self-presenting and self-advertising content (Lee et al.; Lup et al.; Sheldon and Bryant). The positive tone of the shared motifs and captions can also be explained by larger, sometimes anonymous networks on Instagram. The principle of non-reciprocal following of public accounts increasingly creates weak ties, which can additionally encourage the sharing of positively connoted content due to the anonymity (Lin et al.; Waterloo et al.). The posting of negative moods or image motifs to anonymous followers does not seem to be socially standardised, due to the associated intimate thoughts and feelings (Bazarova). In addition, users are aware of the public framework in which they address intimate topics and discourses (Bazarova and Choi). Internal platform standards and technical possibilities thus create a particular posting culture: an environment that is—due to its strong visual-aesthetic structure and anonymous follower-based networks—almost exclusively positive. However, these assumptions and findings are based on a general posting culture, which is usually not focussed on niche topics like cancer. Previous studies show that SNS are used for exchange and networking, especially by young cancer patients (Chou and Moskowitz; Perales et al.). Studies from online SNS disease-related self-help groups show that weak ties in illness situations are considered beneficial when it comes to self-disclosure, seeking help, and support (Wright et al.; Love et al.; Donovan et al.). In addition, Instagram is part of the so-called “vital media” (Stage et al.), which means it is very important for young cancer patients to share cancer-related material. But despite these research findings less is known about the content shared by German-speaking bloggers who have visible cancer references in their Instagram biography. Do they include a serious, even life-threatening illness on a platform that actually stands for positivity, or do they follow the invisible platform regulations in their posted content and statements and exclude it by themselves? The specific objectives of this explorative study were (a) to obtain a descriptive analysis of the manner in which cancer bloggers post content on Instagram, and (b) to determine the extent to which most applied practices exclude the posting of certain negatively connoted motives and emotions associated with cancer. Methodology For the study, 142 German-speaking cancer bloggers (14–39 years of age) with public accounts and visible cancer references in their biography were researched on Instagram. The sample was divided into posts (7,553) and stories (4,117). The content was examined using a standardised content analysis and a code book with relevant categories (motifs, body presences, emotions, captions, emojis; ICR Cronbach’s alpha = 0.85). Measured by the value of the content posted, the story users, at 23 years of age, were comparatively much younger than the post users, at 30 years of age. The sample was predominantly female in both posts (81%) and stories (99%). The most common form of cancer was breast cancer (posts: 28%; stories: 29%), followed by brain tumors (posts: 19%; stories: 16%) and leukaemia (posts: 4%; stories: 19%). Most content was shared by people who were actively involved in treatment – 46% of posts and 54% of stories. Completed treatments were more common in posts (39%) than in stories (19%). At the time of data collection, the Instagram entries were explicitly open to the public, and no registration was required. The content, not the individual, was analysed to minimise the risk for the bloggers and to prevent them from violations of privacy and autonomy by third parties. Furthermore, the entries were assigned unidentifiable numbers to ensure that no tracing is possible (Franzke et al.). Results The sample consists of public cancer blogger accounts who document everyday experiences for their network in images and videos. The following results are shown for posts (P) and stories (S). Motifs and Bodies Looking at the evaluation of the image motifs, the selfie predominates both in posts, with 20.7 per cent, and stories, with 32.8 per cent. Other popular photo motifs are pictures of food (P: 10.2%; S: 11.0%), activities (P: 7.2%; S: 7.7%), landscapes (P: 6.3%; S: 7.1%), and of/with family and friends (P: 12.5%; S: 6.0%). Photos in medical or clinical settings are rare, with one per cent in the posts and three per cent in the stories. Looking at the bodies and faces displayed, a comparatively normal to positive image of the bloggers that were studied can be observed. Most of the people in the posts present themselves with hair (81.3%), wear make-up (53.3%) and smile at the camera (64.1%). A similar trend can also be seen in the stories. Here 63.8 per cent present themselves with hair, 62.7 per cent with make-up and 55.3 per cent with happy facial expressions. In contrast, scars (P: 1.6%; S: 4.4%) or amputations (P: 0.2%; S: 0.1%) are hardly ever shown. Thus, possible therapy-accompanying symptoms, such as alopecia, ports for chemotherapy, or amputations (e.g. mastectomy in the case of breast cancer) are rarely or hardly ever made visible by cancer bloggers. Captions, Hashtags, and Emojis Similar to the motifs, everyday themes dominate in the captions of the images, such as the description of activities (P: 23.2%; S: 18.0%), food (P: 8.2%; S: 9.3%), or beauty/fashion (P: 6.2%; S: 10.2%). However, information on the current health status of the person affected can be found under every tenth photo, both in the stories and in the posts. Hashtags are mainly found amongst the posts with 81.5 per cent. In keeping with the caption, normal themes were also chosen here, divided into the categories of activities (17.7%), beauty/fashion (7.6%), food (5.8%), and family/friends (4.8%). Illness-specific hashtags (e.g. #cancer, #survivor, or #chemo) were chosen in 15.6 per cent. In addition, the cancer bloggers in this study used emojis in 74 per cent of their posts. In the stories, however, only 28.2 per cent of the content was tagged with emojis. The most common category is smileys & people (P: 46.8%; S: 52.8%), followed by symbols (e.g. hearts, ribbons) (P: 21.1%; S: 26.5%), and animals & nature (P: 17.0%; S: 14.2%). Emotions In captions, hashtags and emojis, emotions were divided into positive (e.g. joy, fighting spirit), neutral (e.g. simple narration of the experience), and negative (e.g. fear, anger). It is noticeable that in all three categories predominantly and significantly positive or neutral words and images were used to describe emotional states or experiences. In the case of captions, 40.4 per cent of the posts and 43.9 per cent of the stories could be classified as positive. For the hashtags, the values were 18.7 per cent (P) and 43 per cent (S), and for the emojis 60 per cent (P) and 65.7 per cent (S). In contrast, there were hardly any negative moods (captions P: 5.7%, S: 5.8%; hashtags P: 4.4%, S: 0.7%; emojis P: 8.7%, S: 6.4%). Although the disease status (e.g. active in therapy or completed) had less impact on emotional messages, a significant connection with the applied thematic areas could be observed. Thus, it is apparent that medical and/or therapeutic aspects tend to be described with positive and negative words and hashtags, e.g. the current health status (χ²(3) = 795.44, p =.000, φ = 0.346) or the topics of illness/health via hashtag (χ²(3) = 797.67, p =.000, φ = 0.361). Topics such as food (χ²(3) = 20.49, p =.000, φ = 0.056) or beauty/fashion (χ²(3) = 51.52, p =.000, φ = 0.092) are recognisably more impersonal from an emotional perspective. Discussion A Digital Identity Paradox Drugs, chemotherapy, setbacks, physical impairments, or anxiety are issues that usually accompany cancer patients during treatment and also in remission. Looking at the content posted by German-speaking cancer bloggers on Instagram, illness-related images and words are comparatively rare. The bloggers show their normal, mostly cancer-free world, in which negative and illness-related content does not seem to fit. Although they clearly draw attention to their illness through their biography, this is not or only rarely addressed. Therefore, it can be stated that cancer as a topic is excluded by choice by the bloggers examined. Neither motifs, captions, nor hashtags make the illness visible. This seems paradoxical because the content and biography appear to contradict each other. And yet, the content studied only shows what Jones et al. and Miller have already described: their identity paradox, or multiple identities. The digital acceptance of one's own illness and solidarity with (anonymous) fellow sufferers is clearly given through the disclosure in the biography, but yet a normal and healthy online ego—comparable to the peer group and equal to their own illness identity—is aspired to. It seems as if those affected have to switch their identity back and forth. The awareness that they are already different in real life (in this case, ill) encourages the users examined to show a normal, age-appropriate life—at least online, which is why we speak of an identity paradox 2.0. Based on our data, the obvious otherness of being ill—and in this context the potential higher risk of digital ostracism effects (Greer and Jewkes; Timeo et al.)—can be a reason for self-exclusion of the cancer topic, in order not to be excluded by a healthy peer. The Standard Creates the Content The positive tone that can be found in almost every second post can be explained by the platform standards and practices themselves (Waterloo et al.). Thus, smiling faces in a public environment correspond more to this than sadness, anger, or despair. Although disease-related topics in captions are also provided with negatively connoted language, they do not have a determining influence on the public self-image of the blogger and their life and the illness. The strong visual culture on Instagram does not leave much scope for "other", perhaps more authentic serious content. The fact that published content has the potential to talk about cancer and to make one’s own experience with the disease transparent is proven by blogs (Kim and Gilham). Instagram does not currently seem to be particularly suitable for public profiles to make serious illness narratives about cancer. Conclusion It remains to be noted that public cancer blogs attempt to include a serious topic on Instagram. But with regard to the data, we can see a form of (maybe unconsciously) self-chosen exclusion of illness narratives. The reasons might vary. On the one hand, cancer bloggers want to belong to a healthy peer group, and expressing a visible otherness would exclude them. Therefore, they try to reduce the higher risk potential of ostracism effects. On the other hand, internal Instagram regulations and standards create an environment which can strengthen the bloggers' posting behaviours: young people, especially, post life-affirming and life-related content. This also helps them to cope with crisis situations and to avoid being dominated by a life-threatening disease. Further research on cancer on Instagram is needed to determine to what extent this is desired, and whether an awareness of this paradox exists or develops intuitively. 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Abstract:

Since the mid-eighties, personality and mood have undergone vigorous surveillance and repair across new populations in the United States. While government and the psy-complexes 1 have always had a stake in promoting citizen health, it is unique that, today, State, industry, and non-governmental organisations recruit consumers to act upon their own mental health. And while citizen behaviours in public spaces have long been fodder for diagnosis, the scope of behaviours and the breadth of the surveyed population has expanded significantly over the past twenty years. How has the notion of behavioural illness been successfully spun to recruit new populations to behavioural diagnosis and repair? Why is it a reasonable proposition that our personalities might be sick, our moods ill? This essay investigates the cultural promotion of a 'script' that assumes sick moods are possible, encourages the self-assessment of risk and self-management of dysfunctional mood, and has thus helped to create a new, adjustable subject. Michel Foucault (1976, 1988) contended that in order for subjects to act upon their selves -- for example, assess themselves via the behavioural health script -- we must view the Self as a construction, a work in progress that is alterable and in need of alteration in order for psychiatric action to seem appropriate. This conception of the self constitutes an extreme theoretical shift from the early modern belief (of Rousseau or Kant) that a core soul inhabited and shaped being, or the moral self.2 Foucault (1976) insisted that subjects are 'not born but made' through formal and informal social discourses that construct knowledge of the 'normal' self. Throughout the 19th century and the modern era, as medical, juridical, and psychiatric institutions gained increasing cultural capital, the normal self became allegedly 'knowable' through science. In turn, the citizen became 'professionalised' (Funicello 1993) -- answerable to these constructed standards, or subject to what Foucault termed biopower. In order to avoid punishments wrested upon the 'deviant' such as being placed in asylum or criminalised, citizens capitulated to social norms, and thus helped the State to achieve social order. 3 While 'technologies of power' or domination determined the conduct of individuals in the premodern era, 'technologies of the self' became prominent in the modern era.4 (Foucault, 'Technologies of the Self') These, explained Foucault, permit individuals to act upon their 'bodies, souls, thoughts, conduct and ways of being' to transform them, to attain happiness, or perfection, among other things (18). Contemporary psychiatric discourses, for example, call upon citizens to transform via self-regulation, and thus lessened the State's disciplinary burden. Since the mid-twentieth century, biopsychiatry has been embraced nationally, and played a key role in propagating self-disciplining citizens. Biopsychiatric logic is viewed culturally as common sense due to a number of occurrences. The dominant media have enthusiastically celebrated so-called biotechnical successes, such as sheep cloning and the development of better drugs to treat Schizophrenia. Hype has also surrounded newer drugs to treat depression (i.e. Prozac) and anxiety (i.e. Paxil), as well as the 'cosmetic' use of antidepressants to allegedly improve personality.5 Citizens, then, are enlisted to trust in psychiatric science to repair mood dysfunction, but also to reveal the 'true' self, occluded by biologically impaired mood. Suggesting that biopsychiatry's 'knowledge' of the human brain has revealed the human condition and can repair sick selves, these discourses have helped to launch the behavioural health script into the national psyche. The successful marketing of the script was also achieved by the diagnostic philosophy encouraged by revisions of Diagnostic and Statistical Manual or Mental Disorders(the DSM; these renovations increased the number of affective (mood) and personality diagnoses and broadened diagnostic criteria. The new DSMs 6 institutionalised the pathologisation of common personality and mood distresses as biological or genetic disorders. The texts constitute 'knowledge' of normal personality and behaviour, and press consumers toward biotechnical tools to repair the defunct self. Ian Hacking (1995) suggests that new moral concepts emerge when old ones acquire new connotations, thereby affecting our sense of who we are. The once moral self, known through introspection, is thus transformed via biopsychiatry into a self that is constructed in accordance with scientific 'knowledge'. The State and various private industries have a stake in promoting this Sick Self script. Promoting Diagnosis of the Sick Self Employing the DSM's broad criteria, research by the National Institute of Mental Health (NIMH), contends that a significant percentage of the population is behaviourally ill. The most recent Surgeon General report on Mental Health (from 1999) which also employed broad criteria, argues that a striking 50 million Americans are afflicted with a mental illness each year, most of which were non-major disorders affecting behaviour, personality and mood.7 Additionally, studies suggest that behavioural illness results in lost work days and increases demand for health services, thus constituting a severe financial burden to the State. Such studies consequently provide the State with ample reason to promote behavioural illness. In predicting an epidemic in behavioural illness and a huge increase in mental health service needs, the State has constructed health policy in accordance with the behavioural sickness script. Health policy embraces DSM diagnostic tools that sweep in a wide population by diagnosing risk as illness and links diagnosis with biotechnical recovery methods. Because criteria for these disorders have expanded and diagnoses have become more vague, however, over-diagnosis of the population has become common . 8 Depression, for example, is broadly defined to include moods ranging from the blues to suicidal ideation. Yet, the Sick Self script is ubiquitously embraced by NGO, industry, and State discourses, calling for consumer self-scrutiny and strongly promoting psychopharmaceuticals. These activities has been most successful; to wit: personality disorders were among the most common diagnoses of the 80's, and depression, which was a rare disorder thirty-five years ago, became the most common mental illness in the late 90's (Healy). Consumer Health Groups & Industry Promotions Health institutions and drug industries promote mood illness and market drug remedies as a means of profit maximisation. Broad spectrum diagnoses are, by definition, easy to sell to a wide population and create a vast market for recovery products. Pharmaceutical and insurance companies (each multibillion dollar industries), an expanding variety of self-help industries, consumer health web sites, and an array of psy-complex workers all have a stake in promoting the broad diagnosis of mood and behavioural disorders. 9 In so doing, consumer groups and the health and pharmaceutical industries not only encourage self-discipline (aligning themselves with State productivity goals), but create a vast, ongoing market for recovery products. Promoting Illness and Recovery So strong is the linkage between illness and recovery that pharmaceutical company Eli Lilly sells Prozac by promoting the broad notion of depression, rather than the drug itself. It does so through depression brochures (advertised on TV) and a web page that discusses depression symptoms and offers a depression quiz, instead of product information. Likewise, Psych Central, a typical informational health site, provides consumers standard DSM depression definitions and information (from the biopsychiatric-driven American Psychiatric Association (APA) or the NIMH, and liberal behavioural illness quizzes that typically over-diagnose consumers. 10The Psych Central site also lists a broad range of depression symptoms, while its FAQ link promotes the self-management of mood ailments. For example, the site directs those who believe that they are depressed and want help to contact a physician, obtain a diagnosis, and initiate antidepressant treatment. Such web sites, viewed as a whole, appear to deliver certified knowledge that a 'normal' mood exists, that mood disorders are common, and that abiding citizens should diagnosis and treat their mood ailment. Another essential component of the behavioural script is the suggestion that the modern self's mood is interminably sick. Because common mood distresses are fodder for diagnosis, the self is always at risk of illness, and requires vigilant self-scrutiny. The self is never a finished product. Moreover, mood sickness is insidious and quickly spirals from risk to full-blown disorder. 11 As such, behavioural illness requires on-going self-assessment. Finally, because mood sickness threatens social productivity and State financial solvency, a moral overtone is added to the mix -- good citizens are encouraged to treat their mood dysfunctions promptly, for the common good. The script thus constructs citizenship as a motive for behavioural self-scrutiny; as such, it can naturally recommend that individuals, rather than experts, take charge of the surveillance process. The recommendation of self-determined illness is also a sales feature of the script, appealing to the American ethic of individualism -- even, paradoxically, as the script proposes that science best directs us to our selves. Self-Managed Recovery Health institutions and industries that deploy this script recommend not only self-diagnosis, but also self-managed treatment as the ideal treatment. Health information web sites, for example, tend to displace the expert by encouraging consumers to pre-diagnose their selves (often via on-line quizzes) and to then consult an expert for formal diagnosis and to organise a treatment program. Like governmental heath organisation's web sites, these commonly link consumer-driven, broad-spectrum diagnosis to psycho-pharmaceutical treatment, primarily by listing drugs as the first line of treatment, and linking consumers to drug information. Unsurprisingly, pharmaceutical companies support or own many 'informational' sites. Depression-net.com, for example, is owned by Organon, maker of Remeron, an SSRI in competition with Prozac.12 Still, even sites that receive little or no funding tend to display drugs prominently; for example, Internet Mental Health, which accepts no drug funding lists drugs immediately after diagnosis on the sidebar. This trend illustrates the extent to which drugs are viewed by consumers as a first step in addressing all types of mood sicknesses. Consumer health sites, geared toward Internet users seeking health care information (estimated to be 43% of the 120 million users) promote the illness-recovery link more aggressively. Dr.koop.com, one of the most visited sites on the Internet, describes itself as 'consumer-focused' and 'interactive'. Yet, the homepage of this site tends to include 'news' stories that relay the success of drugs or report on new biopsychiatric studies in depression or mental health. Some consumer sites such as Consumer health sites, geared toward Internet users seeking health care information (estimated to be 43% of the 120 million users) promote the illness-recovery link more aggressively. Dr.koop.com, one of the most visited sites on the Internet, describes itself as 'consumer-focused' and 'interactive'. Yet, the homepage of this site tends to include 'news' stories that relay the success of drugs or report on new biopsychiatric studies in depression or mental health. Some consumer sites such as WebMD prominently display links to drugstores, (such as Drugstore.com), many of which are owned in part or entirely by pharmaceutical companies.13 Similar to the common practices of direct-to-consumer advertising, both informational and consumer sites by-pass the expert, promote recovery via drugs, and direct the consumer to a doctor in search of a prescription, rather than health care advice. State, informational and consumer web sites all help to construct certain populations as at-risk for behavioural sickness. The NIMH information page on depression -- uncanny in its likeness to consumer health and pharmaceutical sites -- utilises the DSM definition of depression and recommends the standard regime of diagnosis and biotechnical treatments (highlighting antidepressants) most appropriate for a diagnosis of major, rather than minor, depression. The site also elaborates the broad approach to mood illness, and recommends that women, children and seniors -- groups deemed at-risk by the broad criteria -- be especially scrutinised for depression. By articulating the broad DSM definition of depression, a generalisable 'self' -- anyone suffering common ailments including sadness, lethargy or weight change -- is deemed at risk of depression or other behavioural illness. At the same time, at-risk groups are constructed as populations in need of more urgent scrutiny, namely society's less powerful individuals, rather than middle-aged males. That is, society's decision-makers--psychiatric researchers, State policy-makers, pharmaceutical CEO's, (etc) are considered least at risk for having defunct selves and productivity functioning. Selling Mood Sickness These brief examples illustrate the standard presentation of behavioural illness information on the Web and from traditional resources such as mailings, brochures, and consumer manuals. Presenting the ideal self as knowable and achievable with the help of bio-psychiatric science, these discourses encourage citizens to self-scrutinise, self-define, and even self-manage the possibility of mood or behavioural dysfunction. Because the individual gathers information, determines her pre-diagnosis, and seeks out a recovery technology, the many choices involved in behavioural scrutiny make it appear to be a free and 'democratic' activity. Additionally, as individuals take on the role of the expert, self-diagnosing via questionnaires, the highly disciplinary nature of the behavioural diagnosis appears unthreatening to individual sovereignty. Thus, this technology of the self solves an age-old problem of capitalist democracy -- how to simultaneously instill citizen's faith in absolute individual liberty (as a source of good government), and, at the same time, the need to achieve the absolute governance of the individual (Miller). Foucault contended that citizens are brought into the social contract of citizenship not simply through social and governmental contracts but by processes of policing that become embedded in our notions of citizenship. The process of self-management recommended by the ubiquitous behavioural script functions smoothly as a technology of surveillance in this era, where the ideal self is known and repaired through biopsychiatric science, the democratic responsibility of a good citizen. The liberal contract has always entailed an exchange of rights for freedoms -- in Rousseau's terms 'making men free by making them subjects.' (Miller xviii) When we make ourselves subjects to ongoing behavioural scrutiny, the resulting Self is not freed, rather it is constrained by a perpetual sickness. Notes 1 This term is used in a Foucaultian sense, to refer to all those who work under and benefit or profit from the dominant biological model of psychiatry dominant since the 1950's in the U.S. 2 For more discussion, see Ian Hacking, Rewriting the Soul; Multiple Personality and the Sciences of Memory. (1995) 3 In his essay 'Technologies of the Self' (1988) Foucault outlines the four major types of technologies that function as practical reason and entice citizens to behave according to constructed social standards. Among these are technologies of production (that permit us to produce things), technologies of sign systems (permitting us to use symbols), and the technologies of power and self mentioned in the above text. Through these technologies, operations of individuals become highly regulated, some visible and some difficult to perceive. The less visible technologies of the self became essential to the smooth functioning of society in the modern era. 4 'Technologies' is used to refer to mechanisms and actions of institutions or simply social norms and habits, that work, ultimately, to govern the individual, or create behaviour that serves desires of the State and dominant social bodies. 5 Peter Kramer, author of the best-selling book Listening to Prozac (1995) contends that his patients using Prozac often credited the drug with helping their true personalities to surface. 6 The two revisions occurred in 1987 and 1994. 7 Of that group, only five percent of that group suffers a 'severe' form of mental illness (such as schizophrenia, or extreme form of bipolar or obsessive compulsive disorder), while the rest suffer less severe behavioural and mood disorders. Similar research (also based on broad criteria) was published throughout the 90's suggesting an American epidemic of behavioural illness; it was claimed that 17% of the population is neurotic, while 10-15% of the population (and 30-50% of those seeking care) was said to possess a personality disorder. (Hales and Hales, 1995) 8 The most widely assigned diagnoses in this category today are: depression, multiple personality, adjustment disorder, eating disorders and Attention Deficit Hyperactivity Disorder (ADHD), which have extremely broad criteria, and are easily assigned to a wide segment of the population. 9The quizzes offered at these sites are standard in psychiatry; the difference here is that these are consumer-conducted. Lilly uses the Zung Self-Assessment Tool, which asks 20 broad questions regarding mood, and overdiagnoses individuals with potential depression. By responding to vague questions such as 'Morning is when I feel the best', 'I notice that I am losing weight', and 'I feel downhearted, blue and sad' with the choice of 'sometimes', individuals are thereby pre-diagnosed with potential depression. (https://secure.prozac.com/Main/zung.jsp) Psych central uses the Goldberg Inventory that is similarly broad, consumer-operated, and also tends to overdiagnose. 10 The DSM and other psychiatric texts and consumer manuals commonly suggest that undiagnosed depression will lead, eventually, to full-blown major depression. While a minority of individuals who suffer ongoing episodes of major depression will eventually suffer chronic major depression, it has not been found that minor depression will snowball into major depression or chronic major depression. This in fact, is one of the many suspicions among researchers that is referred to as fact in psychiatric literature and consumer manuals. A similar case in point is the suggestion that depression is a brain disorder, when in fact, research has not determined biochemistry or genetics to be the 'cause' of major depression. 11 Increasingly, Pharmaceutical sites are indistinguishable from consumer sites, as in the case of Bristol-Meyers Squibb's depression page, (http://www.livinglifebetter.com/src/htdo...) offering a layperson's depression definition and, immediately thereafter, information on its antidepressant Serzone. 12 Like the informational and State sites, these also link consumers to depression information (generally NIMH, FDA or APA research), as well as questionnaires. References American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed. Washington, D.C: American Psychiatric Press, Inc., 1994. Cruikshank, Barbara. The Will to Empower: Democratic Citizens and Other Subjects. Ithaca, NY: Cornell University Press, 1999. Foucault, Michel. Madness and Civilization; A History of Insanity in the Age of Reason. New York: Vintage, 1961. - - - . The Order of Things; An Archaeology of the Human Science., New York: Vintage, 1966. - - - . The History of Sexuality; An Introduction, Volume I. New York: Vintage, 1976. - - - . 'Technologies of the Self', Technologies of the Self; A Seminar with Michel Foucault. Ed. Luther Martin, Huck Gutman, and Patrick H. Hutton. Amherst: University of Amherst Press, 1988. 16-49. Funicello, Theresa. The Tyranny of Kindness; Dismantling the Welfare System to End Poverty in America. New York: Atlantic Monthly Press, 1993. Hales, Dianne R. and Robert E. Hales. Caring For the Mind: The Comprehensive Guide to Mental Health. New York: Bantam Books, 1995. Healy, David. The Anti-Depressant Era. Cambridge, Mass: Harvard University Press, 1997. Kramer, Peter D. Listening to Prozac; A Psychiatrist Explores Antidepressant Drugs and the Remaking of the Self. New York: Viking, 1993. Miller, Toby. The Well-Tempered Self; Citizenship, Culture and the Postmodern Subject. Baltimore: The John Hopkins University Press, 1993. - - - . Technologies of Truth: Cultural Citizenship and the Popular Media. Minneapolis: University of Minnesota Press, 1998. Office of the Surgeon General. Mental Health: A Report of the Surgeon General. 1999. <http://www.surgeongeneral.gov/library/me...> Rose, Nickolas. Governing the Soul; The Shaping of the Private Self. London: Routledge, 1990. Links http://www.drugstore.com http://psychcentral.com/library/depression_faq.htm http://www.wikipedia.com/wiki/DSM-IV http://www.nimh.nih.gov/publicat/depression.cfm http://www.livinglifebetter.com/src/htdocs/index.asp?keyword=depression_index http://my.webmd.com http://www.mentalhealth.com http://www.surgeongeneral.gov/library/mentalhealth/home.html http://www.prozac.com http://my.webmd.com/ http://www.a-silver-lining.org/BPNDepth/criteria_d.html#MDD http://psychcentral.com/depquiz.htm Citation reference for this article Substitute your date of access for Dn Month Year etc... MLA Style Gardner, Paula. "The Perpetually Sick Self" M/C: A Journal of Media and Culture 5.5 (2002). [your date of access] < http://www.media-culture.org.au/mc/0210/Gardner.html &gt. Chicago Style Gardner, Paula, "The Perpetually Sick Self" M/C: A Journal of Media and Culture 5, no. 5 (2002), < http://www.media-culture.org.au/mc/0210/Gardner.html &gt ([your date of access]). APA Style Gardner, Paula. (2002) The Perpetually Sick Self. M/C: A Journal of Media and Culture 5(5). < http://www.media-culture.org.au/mc/0210/Gardner.html &gt ([your date of access]).

Abstract:

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 Hitchco*ck’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>.

Abstract:

Photo by Kelley Sikkema on Unsplash INTRODUCTION Patients seeking abortion services in the United States face several problems, including factual inaccuracies about the procedure, the stigma surrounding the procedure, and barriers to quality care across the country. The problems surrounding abortion pose a threat to patient autonomy and beneficence—ethical principles that are usually upheld in medicine. Abortion doulas can enhance patient autonomy, improve the quality of medical care, help women talk through their emotions or the associated stigma, and provide other benefits that can address the problems surrounding abortion. Their role ranges from discussing emotional decisions and answering patient questions before the procedure, to simply holding their hand in the recovery room. In this paper, I propose that the use of abortion doulas may help address some of the problems surrounding abortion by mitigating factual inaccuracies, stigma, and barriers to quality care. I. Background Abortion doulas were started byThe Doula Project in New York City.[1]They initially worked with New York City public hospitals and eventually expanded to working with Planned Parenthood clinics, as well as other care providers.[2]Over recent years, abortion doulas have been offered in more states such as California, Arizona, and New Hampshire. Abortion doulas can work independently, in a collective, or in an abortion clinic.[3]More often, they work in a collective where they are trained and employed in clinics that are partnered with the organization. Many abortion doulas started working on a volunteer basis. Now, many are funded by donations, which allow their services to be free for patients.[4]When abortion doulas work independently, their rates are based on the specific services that they provide.[5]Patients can seek out abortion doulas through multiple avenues. They can seek out doulas that work independently, work in an abortion clinic, or through doula organizations, such as the Doula Project or The San Francisco Doula Group. II. Doulas The role of a doula has existed since ancient times. The word “doula” comes from the Greek language and translates to “a woman who serves”.[6]In 1969, Dr. Dana Raphael originated the use of the word “doula” in the US to describe a person who guides mothers through childbirth and assists them postpartum, specifically helping them breastfeed.[7]Dr. Raphael encouraged emotionally supporting new mothers through creating the new professional role of a doula.[8] Currently, doulas are trained in helping women emotionally and physically during pregnancy, childbirth, and postpartum. Doulas do not provide medical care, but they provide services such as birthing education, massage, assistance with breastfeeding, and educating mothers about the delivery process, such as knowing what to expect and what can go wrong. Research has demonstrated the effectiveness and benefits of doulas. For example, one meta-analysis compared women who received doula support during childbirth to women who did not. The study showed that doula-supported women had shorter labors, decreased complications with delivery, and rated childbirth as less painful than women without doula support.[9]Psychosocial benefits such as reduced anxiety, decreased symptoms of depression, and positive feelings associated with childbirth were significant for the doula-supported group.[10]In the last couple of decades, doulas have become increasingly popular. More recently, doulas have started a movement labeled “full spectrum doula,” in which the role of a doula in supporting women has expanded beyond birth to include abortion and adoption.[11] III. Ethical Considerations Factual Inaccuracies Complete and accurate medical information is fundamental to informed consent and autonomous decision making. Inaccurate medical information about abortion is very common and can come from multiple sources. Currently, there are 29 states that have policies restricting abortion that are not based on scientific evidence.[12]While both state policies and national media may convey false information to the public about abortion, perhaps what is most surprising is when these inaccuracies are presented to patients by physicians or medical facilities. In most states, policies mandate that any medical facility providing abortions develop and present written material to patients that is intended to educate the patient about the abortion procedure.[13]However, in some states, laws have been passed that mandate the inclusion of misinformation in these materials.[14]Healthcare providers try to mitigate the harm of this inaccurate information by prefacing it with qualifiers, disclaimers, and apologies.[15]However, they are still not able to completely avoid harm from the outdated and misleading information, which also often intends to dissuade patients from receiving an abortion.[16]The most common factual inaccuracies include stating that an abortion leads to an increased risk of breast cancer, that the fetus can feel pain as early as 12 weeks old, and that psychological effects of the procedure can lead to suicide and “post abortion traumatic stress syndrome.”[17]All these statements are false and not supported by scientific evidence; in fact, psychologists and the Diagnostic and Statistical Manual of Mental Disorders(DSM-V) do not recognize a post-traumatic stress syndrome associated with abortion.[18]Furthermore, another common inaccuracy in almost 20 states includes materials with contact information to “Crisis Pregnancy Centers” that provide false information with the intent to deter women from having an abortion.[19] Even once piece of inaccurate information can impede a patient’s ability to make an informed, autonomous decision. When these false facts are given to patients from the hands of trusted medical professionals, it has a more influential impact than when portrayed in media and advertisem*nts. Trust is a core value in the medical profession that determines the patient-physician relationship, and a part of this trust is communicating accurate and up-to-date information; if this trust did not exist in medicine, how would any patient make an informed decision? Where would they turn to for guidance and advice?[20]Challenges to informed consent and autonomy exist throughout medicine, as consent forms are complicated and filled with medical vocabulary that is often hard to understand. Signatures are sometimes scribbled onto forms before a procedure with minimal discussions to assess the patient’s understanding of the many risks and benefits. However, abortions have an additional layer of complexity regarding informed consent due to the religious and moral implications of choosing an abortion, while other common medical procedures, such as an appendectomy, do not carry the same implications. For example, a patient consenting to general surgery would probably not wonder if their physician’s advice against the surgery is due to his or her own moral values, or what the moral weight of the surgery will have on their conscious afterwards. Informed consent, regardless of procedure, should prioritize informed decision-making with evidence-based medicine without moral overtones. When inaccurate, biased, and false information is given to patients from medical institutions, it not only threatens the trust between patients and medical staff, but also prevents women from making an informed decision about their reproductive health. If abortion doulas can be a source of correct, up-to-date medical information, then women can make informed decisions based on thorough and accurate facts that allow them to exercise autonomy. Abortion doulas are well situated to correct the factual inaccuracies patients face for several reasons. First, abortion doulas are trained through a curated program with partnered medical facilities.[21]In other words, abortion doulas are thoroughly trained in patient-centered care that facilitates continuous patient support, which ranges from emotional support to providing accurate medical information when addressing patient concerns. Second, they have the time before the procedure to meet with the patient and discuss pre-abortion care topics such as providing information, addressing concerns, and preparing the patient for potential stigmatization.[22]Simultaneously, the doula can evaluate for any risk factors that may indicate negative emotions after the abortion, such as lack of social support, self-esteem, psychological stability, or multiple abortions.[23]Third, abortion doulas can provide post-abortion care counseling. While the doulas also have limited time with patients after the procedure, they would have more time than other healthcare professionals, such as nurses, to make sure the patient understands the medication regime while also offering psychological counseling for the patient on grief, guilt, and forgiveness.[24]With doulas providing technical post-procedure information, this allows them to answer any more questions that the patient may have about misleading, biased, out-of-date, or false information. Therefore, doulas can enhance patient autonomy by giving more accurate information. IV. Stigma Another critical problem facing patients who seek abortions is the stigma surrounding the procedure itself. An abortion requires many decisions to be made: do you want to be sedated or awake for the procedure? If you are awake, do you want someone to hold your hand or someone to talk to? Do you want to have privacy after the procedure? In fact, the first decision to be made is whether to have the abortion at all. For some women, that decision is immediate, quick, and assured. For others, the decision can be morally conflicting, such as due to religious reasons, society’s stigma, or other reasons. The moral conflict a woman faces when deciding on an abortion is determined by how much moral weight they apply to a fetus or embryo.[25]An abortion can make a woman feel as though they are a bad person or doing something morally wrong, especially if they place more weight on the moral status, or viability, of the fetus or embryo.[26]Regardless of why a woman feels conflicted, the bottom line is that these feelings exist, which can affect their decision-making abilities during the actual process. Our society stigmatizes women for having an abortion, it is our “modern-day Scarlet Letter.”[27]This stigma is under-researched but often theorized to be based on gender-biased roles of women in society.[28]Women who receive an abortion are labeled as “irresponsible” for having an unwanted pregnancy, or “selfish” and “unmotherly” for not wanting children. Therefore, women avoid judgement and prefer privacy during their abortion—but are these choices made because that is truly what a woman desires, or are they making these choices to avoid stigma? And, if they are making these choices to avoid stigma, how does it affect their autonomy as a decision-maker for their own healthcare choices? There is a difference between secrecy and privacy: women may want to keep their abortion decision private, like any other medical decision or health information.[29]However, some women make the decision in secret to avoid judgment and stigmatization. There is evidence that stigma plays a role in every decision of the abortion process. For example, one study explores the reasons why some women prefer to be awake versus asleep during the procedure. Women who choose to be asleep want to be less emotionally present for the fear of “seeing something” during the procedure. On the other hand, women who choose to be awake want to feel present, safe, and receive support during the process.[30]The study also found that most women rated an abortion procedure a “good experience” if care was provided in a discreet and private manner.[31]By preferring anesthesia and privacy, many women try to avoid dealing with the stigma and judgement from others. The stigma also prevents women from seeking or receiving social support.[32]While some women may make these choices because it is what they truly want, others might choose these options to avoid others witnessing their decision and from being stigmatized as a woman who “got an abortion.” Although abortion doulas cannot completely abolish the overarching societal stigma, they can help in several different ways on an individualistic level. Abortion doulas may fit the role of personalizing each experience to fit patients’ specific preferences. Doulas have the time and appropriate training to understand and discuss the emotional burdens that come along with the social stigma that surrounds abortions.[33]They have the training to explore the patient’s reasons for their decisions and can make sure they are comfortable with them. They do so in a non-judgmental way and strive to act as an advocate for the patient.[34]By listening to women and validating their decisions, women may not feel as many negative emotions surrounding the stigma or feel empowered that they made the right decision for themselves, regardless of social labels. This validation and empowerment gives women more agency in their own healthcare decisions while also providing emotional support in a situation that requires many difficult choices. Abortion doulas would become a support system for women, thereby promoting feminist ethics by normalizing emotions in a morally charged decision. They also promote the principal of beneficence by helping patients address any conflict between societal stigma and the woman’s own beliefs and morals. V. Barriers to Quality Care Access to abortion is limited: only 62 percent of American women live in counties with an abortion provider.[35]Many insurance companies do not cover abortions and clinics are often busy with limited availability, staff, and resources. Additionally, many women would need time off from work, childcare, transportation, and other resources to make it to any medical appointments—abortion care is not an exception. Currently, there are no professional programs for abortion providers to offer post-abortion counseling.[36]Additionally, in busy clinics, hospitals, or non-profit organizations such as Planned Parenthood, physicians attempt to provide as many abortions as possible to as many patients, leaving little time for post-abortion care. Provider burn-out is a major problem throughout healthcare, which has become more pronounced throughout the COVID-19 pandemic. Many providers, nurses, and other hospital staff are overworked and underpaid while hospitals themselves are overcrowded and underfunded. Moreover, abortion providers may be especially vulnerable to burn-outas they tend to both their patient’s medical and emotional needs during a procedure that has both physical pain and a plethora of emotion surrounding it.[37]With an increase in patient number due to decreased availability of services and a physician’s responsibility to tend to the patient’s emotional well-being and physical pain, this increases the risk of provider burn-out, which in turn, can affect the quality of medical care given to women receiving abortions.[38] Abortion doulas can fill the role of providing post-abortion care and help alleviate provider burn-out in many ways. First, as mentioned previously, they have the time before the procedure to meet with the patient and discuss pre-abortion care topics, provide information, and answer questions.[39]Secondly, abortion doulas can provide patients with the post-abortion care counseling that many physicians and nurses are not able to provide. This role has multiple effects. While post-abortion counseling can help address factual inaccuracies through answering questions, it can also allow doulas to make sure the patient understands the medication regime and how to deal with the pain that follows the procedure.[40]With doulas providing technical post-procedure information, this relieves understaffed nurses of some of their many tasks and responsibilities in the post-abortion recovery room; this will likely decrease the number of women who come back to the clinic or hospital with complications or additional questions. By discussing various emotions during post-procedure counseling, doulas support women by listening to their feelings. Some women may feel relief and joy after the procedure, while other may feel despair, regret, grief, or shame. When a doula listens to and supports a patient, they validate their emotions and indirectly validate their abortion decision, thereby improving the quality of the experience. Lastly, the integration of doulas into routine abortion care allows physicians and staff to concentrate on the procedure itself.[41]The doula can offer patient-centered, hands-on care to the patient while the rest of the healthcare team focuses on their own technical tasks.[42]Doula support can also decrease the need for more clinic staff in the procedure room by “decreasing the redirection of clinic staff resources,”thus creating a more efficient medical environment.[43]As the historical role of a doctor playing every role is becoming more obsolete, and the idea of a multi-faceted, integrative healthcare team is becoming the norm, it makes sense that an abortion doula can fill a niche on a healthcare team for emotionally laden procedures like abortions. The niche that the doula fills is to support, comfort, and be present with the patient throughout the entirety of the procedure in a nonjudgmental way. While nurses and doctors can be supportive, sympathetic, and caring, their jobs and roles include other responsibilities that do not allow them to be a continuous presence for the patient throughout their visit.[44]By having a person on the healthcare team whose job is to provide patient support, even if it is simply to hold their hand, the patient is more likely to be treated as a whole and provided better quality medical care. CONCLUSION Inaccurate information, stigma, and quality of care barriers are only a few of the many problems facing patients who want to receive an abortion. Each problem poses ethical challenges while also impeding quality medical care and adding to patients’ emotional burdens. Inaccurate facts and stigma hinder an informed decision, and thereby, threaten patient autonomy. The stigma of abortion can also lead to patients experiencing more negative emotions. Furthermore, healthcare barriers include a wide range of problems, from understaffed clinics to provider burn-out, all of which affect the quality and access to care for patients seeking an abortion. Abortion doulas are part of the solution to these problems. They are an extra resource, a set of hands for the patients to hold in the procedure room, and an expert in providing emotional and social support for the patient. They can enhance a patient’s decision-making skills, support the patient’s emotional well-being, answer factual questions, counter stigma, and help provide quality medical care. Therefore, abortion doulas enhance patient autonomy, promote beneficence, improve access to quality abortion care, and fill a necessary role during the abortion process. [1]Shakouri, Shireen Rose "The Doula Project." Ed. Lee, Shannon2019. Print. [2]Shakouri, Shireen Rose "The Doula Project." Ed. Lee, Shannon2019. Print. [3]Onyenacho, Tracey. "Abortion Doulas Help People Navigate the Process. They Say Their Work Was More Crucial Than Ever in the Pandemic." The Lily 2021. Web. 12/29/2021 2021 [4]Onyenacho, Tracey. "Abortion Doulas Help People Navigate the Process. They Say Their Work Was More Crucial Than Ever in the Pandemic." The Lily 2021. Web. 12/29/2021 2021 [5]Onyenacho, Tracey. "Abortion Doulas Help People Navigate the Process. They Say Their Work Was More Crucial Than Ever in the Pandemic." The Lily 2021. Web. 12/29/2021 2021 [6]Dukehart, Coburn. "Doulas: Exploring a Tradition of Support." The Baby Project. National Public Radio 2011. Web2021. [7]Roberts, Sam. "Dana Raphael, Proponent of Breast-Feeding and Use of Doulas, Dies at 90." New York Times 2016. Web2020. [8]Roberts, Sam. "Dana Raphael, Proponent of Breast-Feeding and Use of Doulas, Dies at 90." New York Times 2016. Web2020. [9]Scott, K. D., P. H. Klaus, and M. H. Klaus. "The Obstetrical and Postpartum Benefits of Continuous Support During Childbirth." J Womens Health Gend Based Med 8.10 (1999): 1257-64. Print. [10]Scott, K. D., P. H. Klaus, and M. H. Klaus. "The Obstetrical and Postpartum Benefits of Continuous Support During Childbirth." J Womens Health Gend Based Med 8.10 (1999): 1257-64. Print. [11]Chor, J., et al. "Doulas as Facilitators: The Expanded Role of Doulas into Abortion Care." J Fam Plann Reprod Health Care 38.2 (2012): 123-4. Print. [12]Nash, Elizabeth; Gold, Rachel Benson; Mohamed, Lizamarie; Ansari-Thomas, Zohra; Capello, Olivia "Policy Trends in the States, 2017." Guttmacher Instititue 2018. Web. [13]Richardson, Chinue Turner; Nash, Elizabeth. "Misinformed Consent: The Medical Accuracy of State-Developed Abortion Counseling Materials " Guttmacher Policy Review 9.4 (2006). Print. [14]Buchbinder, Mara, et al. "“Prefacing the Script” as an Ethical Response to State-Mandated Abortion Counseling." AJOB Empirical Bioethics 7.1 (2016): 48-55. Print. [15]Buchbinder, Mara, et al. "“Prefacing the Script” as an Ethical Response to State-Mandated Abortion Counseling." AJOB Empirical Bioethics 7.1 (2016): 48-55. Print. [16]Richardson, Chinue Turner; Nash, Elizabeth. "Misinformed Consent: The Medical Accuracy of State-Developed Abortion Counseling Materials " Guttmacher Policy Review 9.4 (2006). Print. [17]Richardson, Chinue Turner; Nash, Elizabeth. "Misinformed Consent: The Medical Accuracy of State-Developed Abortion Counseling Materials " Guttmacher Policy Review 9.4 (2006). Print. [18]Blevins, Christy A., et al. "The Posttraumatic Stress Disorder Checklist for Dsm-5 (Pcl-5): Development and Initial Psychometric Evaluation." Journal of Traumatic Stress 28.6 (2015): 489-98. Print. [19]Richardson, Chinue Turner; Nash, Elizabeth. "Misinformed Consent: The Medical Accuracy of State-Developed Abortion Counseling Materials " Guttmacher Policy Review 9.4 (2006). Print. [20]Pellegrini, C. A. "Trust: The Keystone of the Patient-Physician Relationship." J Am Coll Surg 224.2 (2017): 95-102. Print. [21]Shakouri, Shireen Rose "The Doula Project." Ed. Lee, Shannon2019. Print. [22]Chor, Julie, et al. "Factors Shaping Women’s Pre-Abortion Communication with Members of Their Social Network." Journal of Community Health 44.2 (2019): 265-71. Print. [23]Harris, Amy A. "Supportive Counseling before and after Elective Pregnancy Termination." Journal of Midwifery & Women’s Health 49.2 (2004): 105-12. Print. [24]Chor, Julie, et al. "Factors Shaping Women’s Pre-Abortion Communication with Members of Their Social Network." Journal of Community ` Health 44.2 (2019): 265-71. Print. [25]Watson, Katie. The Scarlet A Oxford University Press, 2018. Print. [26]Altshuler, A. L., et al. "A Good Abortion Experience: A Qualitative Exploration of Women's Needs and Preferences in Clinical Care." Soc Sci Med 191 (2017): 109-16. Print. [27]Watson, Katie. The Scarlet A Oxford University Press, 2018. Print. [28]Norris, A., et al. "Abortion Stigma: A Reconceptualization of Constituents, Causes, and Consequences." Womens Health Issues 21.3 Suppl (2011): S49-54. Print. [29]Watson, Katie. The Scarlet A Oxford University Press, 2018. Print [30]Altshuler, A. L., et al. "A Good Abortion Experience: A Qualitative Exploration of Women's Needs and Preferences in Clinical Care." Soc Sci Med 191 (2017): 109-16. Print. [31]Altshuler, A. L., et al. "A Good Abortion Experience: A Qualitative Exploration of Women's Needs and Preferences in Clinical Care." Soc Sci Med 191 (2017): 109-16. Print. [32]Norris, A., et al. "Abortion Stigma: A Reconceptualization of Constituents, Causes, and Consequences." Womens Health Issues 21.3 Suppl (2011): S49-54. Print. [33]Basmajian, Alyssa. "Abortion Doulas." Anthropology Now 6.2 (2014): 44-51. Print. [34]Amram, Natalie Lea, et al. "How Birth Doulas Help Clients Adapt to Changes in Circ*mstances, Clinical Care, and Client Preferences During Labor." J Perinat Educ.2: 96-103. Print. [35]Dennis, Amanda, Ruth Manski, and Kelly Blanchard. "A Qualitative Exploration of Low-Income Women's Experiences Accessing Abortion in Massachusetts." Women's Health Issues 25.5 (2015): 463-69. Print. [36]Harris, Amy A. "Supportive Counseling before and after Elective Pregnancy Termination." Journal of Midwifery & Women’s Health 49.2 (2004): 105-12. Print. [37]Chor, J., et al. "Integrating Doulas into First-Trimester Abortion Care: Physician, Clinic Staff, and Doula Experiences." J Midwifery Womens Health 63.1 (2018): 53-57. Print. [38]Jerman J, Jones RK and Onda T. "Characteristics of U.S. Abortion Patients in 2014 and Changes since 2008." Guttmacher Instititue 2016. Web. [39]Chor, Julie, et al. "Factors Shaping Women’s Pre-Abortion Communication with Members of Their Social Network." Journal of Community Health 44.2 (2019): 265-71. Print. [40]Chor, Julie, et al. "Factors Shaping Women’s Pre-Abortion Communication with Members of Their Social Network." Journal of Community Health 44.2 (2019): 265-71. Print. [41]Chor, J., et al. "Integrating Doulas into First-Trimester Abortion Care: Physician, Clinic Staff, and Doula Experiences." J Midwifery Womens Health 63.1 (2018): 53-57. Print. [42]Chor, J., et al. "Integrating Doulas into First-Trimester Abortion Care: Physician, Clinic Staff, and Doula Experiences." J Midwifery Womens Health 63.1 (2018): 53-57. Print. [43]Chor, J., et al. "Doula Support During First-Trimester Surgical Abortion: A Randomized Controlled Trial." Am J Obstet Gynecol 212.1 (2015): 45.e1-6. Print. [44]Basmajian, Alyssa. "Abortion Doulas." Anthropology Now 6.2 (2014): 44-51. Print.

Abstract:

Photo by Christian Bowen on Unsplash ABSTRACT Assisted Reproductive Technology can be a beneficial tool for couples unable to reproduce independently; however, it has historically discriminated against the LGBTQ+ community members. Given the evolution and acceptance of LGBTQ rights in recent years, discrimination and barriers to access reproductive technology and health care should be readdressed as they still exist within this community. INTRODUCTION In recent years, the LGBTQ+ community has made great strides toward attaining equal rights. This fight dates back to 1970 when Michael Baker and McConnell applied for a marriage license in Minnesota.[1] After the county courthouse denied the couple's request, they appealed to the Minnesota Supreme Court. Baker and McConnell’s dispute reached the US Supreme Court. Baker v. Nelson[2] was the first time a same-sex couple attempted to pursue marriage through higher courts in the US.[3] Because the couple lost the case, Baker changed his name to a gender-neutral one, and McConnell adopted Baker, allowing Baker and McConnell to have legal protections like the ability to receive certain inheritances. Baker and McConnell received a marriage license from an unsuspecting clerk from Blue Earth County, where they wed on September 3, 1971.[4] BACKGROUND The Supreme Court’s decision left individual state legislatures the option to accommodate same-sex couples’ rights constitutionally. As a result, some states banned same-sex marriage, while others offered alternative options such as domestic partnerships. With many obstacles, such as the Defense of Marriage Act (DOMA) and President Bush’s efforts to limit marriage to heterosexual people, Massachusetts became the first state to legalize gay marriage in 2003.[5] Other states slowly followed. Finally, in 2015 the US Supreme Court made same-sex marriage legal in all 50 states in Obergefell v. Hodges,[6] marking an important milestone for the LGBTQ+ community’s fight toward marriage equality. The Obergefell v. Hodges decision emphasized that members of the hom*osexual community are “not to be condemned to live in loneliness, excluded from one of civilization's oldest institutions,” thus granting them the right to “equal dignity in the eyes of the law.”[7] This paper argues that in the aftermath of the wide acceptance of LGBTQ rights, discrimination and barriers to access reproductive technology and health care persist nationally. Procreation also faces discrimination. Research supports that children’s overall psychological and physical welfare with same-sex parents does not differ compared to children with heterosexual parents.[8] Some others worry about the children’s developmental health and argue that same-sex male couples’ inability to breastfeed their children may be harmful; however, such parents can obtain breast milk via surrogate donation.[9] Further concerns regarding confusion in gender identity in children raised by same-sex parents are not supported by research in the field indicating that there are “no negative developmental or psychological outcomes for a child, nor does it result in differing gender identity, gender role behavior or sexual partner preference compared to opposite-sex parents.”[10] ANALYSIS l. Desire to Procreate The American perception toward same-sex unions has evolved “from pathology to deviant lifestyle to identity.”[11] In 2001, only 35 percent of Americans favored same‐sex marriage, while 62 percent favored it in 2017.[12] The “Gay marriage generation”[13] has a positive attitude toward same-sex unions, arising from the “interaction among activists, celebrities, political and religious leaders, and ordinary people, who together reconfigured Americans’ social imagination of hom*osexuality in a way that made gay marriage seem normal, logical, and good.”[14] Same-sex couples’ right to build a biological family and ability to do so using modern reproductive technology is unclear. The data generated by the LGBTQ Family Building Survey revealed “dramatic differences in expectations around family building between LGBTQ millennials (aged 18-35) and older generations of LGBTQ people,”[15] which may be in part attributable to recent federal rulings in favor of same-sex couples. Three important results from this survey are that 63 percent of LGBTQ millennials are considering expanding their families throughout parenthood, 48 percent of LGBTQ millennials are actively planning to grow their families, compared to 55 percent of non-LGBTQ millennials; and 63 percent of those LGBTQ people interested in building a family expect to use assisted reproductive technology (ART), foster care, or adoption to become parents.[16] There are 15.9 million Americans who identify as LGBTQ+ (6.1 million of whom are 18 to 35 years old); thus, an estimated “3.8 million LGBTQ+ millennials are considering expanding their families in the coming years, and 2.9 million are actively planning to do so.”[17] Yet access and affordability to ART, especially in vitro fertilization (IVF) and surrogacy for same-sex couples, has not been consistent at a national level. The two primary problems accessing ART for the LGBTQ community are the lack of federal law and cost. A federal law that guaranteed coverage would address both problems. ll. ART for Same-Sex Couples All same-sex male (SSM) couples and same-sex female (SSF) couples must involve third parties, including surrogates or egg or sperm donors.[18] ART involves the legal status of “up to two women (surrogate and egg donor),” the intended parents, and the child for SSM couples.[19] While sometimes necessary for heterosexual couples using ART, an egg or sperm from someone other than the intended parents or a surrogate will always be necessary for the LGBTQ people seeking ART. ART, in particular IVF, is essential for infertile couples unable to conceive on their own. Unlike other industrialized countries (such as Canada, the United Kingdom, Sweden, Germany, and Australia), the US does not heavily oversee this multibillion-dollar industry.[20] The American Society for Reproductive Medicine does provide lengthy guidelines to fertility clinics and sperm banks; however, state lawmakers have been less active as they seem to avoid the controversy surrounding controversial topics like embryo creation and abortion.[21] As a result, states “do not regulate how many children may be conceived from one donor, what types of medical information or updates must be supplied by donors, what genetic tests may be performed on embryos, how many fertilized eggs may be placed in a woman or how old a donor can be.”[22] lll. A Flawed Definition of Infertility The WHO defines the medical definition of infertility as “a disease of the reproductive system defined by the failure to achieve a clinical pregnancy after twelve months or more of regular unprotected sexual intercourse.”[23] This antiquated definition must be updated to include social infertility to integrate same-sex couples’ rights.[24] In the US, single individuals and LGBTQ couples interested in building a family by biological means are considered “socially infertile.”[25] If insurance coverage is allotted only to those with physical infertility, then it is exclusive to the heterosexual community. Although some states, such as New York, discussed below, have directly addressed this inequality by extending the definition of infertility and coverage of infertility treatments to include all residents regardless of sexual orientation, this is not yet the norm everywhere else. The outdated definition of infertility is one of the main issues affecting same-sex couples’ access to ART, as medical insurance companies hold on to the formal definition of infertility to deny coverage. lV. Insurance Coverage for IVF Insurance coverage varies per state and relies on the flawed definition of infertility. As of August 2020, 19 states have passed laws requiring insurance coverage for infertility, 13 of which include IVF coverage, as seen in Figure 1. Also, most states do not offer IVF coverage to low-income people through Medicaid.[26] In states that mandate IVF insurance coverage, the utilization rate was “277% of the rate when there was no coverage,”[27] which supports the likelihood that in other states, the cost is a primary barrier to access. When insurance does not cover ART, ART is reserved for wealthy individuals. One cycle of ART could cost, on average, “between $10,000 and $15,000.”[28] In addition, multiple cycles are often required as one IVF cycle only has “about a 25% to 30%” live birth success rate.[29] Altogether, the total cost of successful childbirth was estimated from $44,000 to $211,940 in 1992.[30] On February 11, 2021, New York Governor Andrew M. Cuomo “directed the Department of Financial Services to ensure that insurers begin covering fertility services immediately for same-sex couples who wish to start a family.”[31] New York had recently passed an IVF insurance law that required “large group insurance policies and contracts that provide medical, major medical, or similar comprehensive-type coverage and are delivered or issued for delivery in New York to cover three cycles of IVF used in the treatment of infertility.”[32] But the law fell short for same-sex couples, which were still required to “pay 6 or 12 months of out-of-pocket expenses for fertility treatments such as testing and therapeutic donor insemination procedures before qualifying for coverage.”[33] Cuomo’s subsequent order made up for gaps in the law, which defined infertility as “the inability to conceive after a certain period of unprotected intercourse or donor insemination.”[34] Cuomo’s order and the law combine to make New York an example other states can follow to broaden access to ART. V. Surrogacy Access to surrogacy also presents its own set of problems, although not exclusive to the LGBTQ community. Among states, there are differences in how and when parental rights are established. States in dark green in Figure 2 allow pre-birth orders, while the states in light green allow post-birth parentage orders. Pre-birth orders “are obtained prior to the child’s birth, and they order that the intended parent(s) will be recognized as the child’s only legal parent(s) and will be placed on the child’s birth certificate,” while post-birth parentage orders have the same intent but are obtained after the child’s birth. [35] For instance, states can require genetic testing post-birth, possibly causing a delay in establishing parentage.[36] Although preventable through the execution of a health care power of attorney, a surrogate mother could be the legal, medical decision-maker for the baby before the intended parents are legally recognized. On February 15, 2021, gestational surrogacy – the most popular type of surrogacy in which the surrogate has no biological link to the baby – was legalized in New York,[37] but it remains illegal in some states such as Nebraska, Louisiana, and Michigan.[38] In addition, the costs of surrogacy are rising, and it can cost $100,000 in the US.[39] Medicaid does not cover surrogacy costs,[40] and some health insurance policies provide supplemental surrogacy insurance with premiums of approximately $10,000 and deductibles starting at $15,000.[41] Thus, “surrogacy is really only available to those gay and lesbian couples who are upper class,”[42] leaving non-affluent couples out of options to start a family through biological means. Vl. A Right to Equality and Procreation Some argue that same-sex couples should have the right to procreate (or reproductive rights). Based on arguments stemming from equal rights and non-discrimination, same-sex couples who need to use ART to procreate should have access to it. The need to merge social infertility into the currently incomplete definition of fertility could help same-sex couples achieve access through insurance coverage. The human right of equality and non-discrimination guarantees “equal and effective protection against discrimination on any ground.”[43] The United Nations later clarified that “sexual orientation is a concept which is undoubtedly covered” [44] by this protection. The right to procreate is not overtly mentioned in the US Constitution; however, the Equal Protection Clause states that “No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States… without due process of law.”[45] In fact, some states have abridged the reproductive privileges of some US citizens by upholding prohibitive and intricate mechanisms that deter same-sex couples from enjoying the privileges other citizens have. The Supreme Court acknowledged procreation as a “fundamental”[46] personal right, in Skinner v. Oklahoma, mandating that the reproductive rights of individuals be upheld as the right to procreate is “one of the basic civil rights of man”[47] because “procreation [is] fundamental to the very existence and survival of the race.”[48] In Eisenstadt v. Baird, the courts also supported that “the decision whether to bear or beget a child” fundamentally affects a person.[49] I argue that this protection extends to same-sex couples seeking to procreate. Finally, Obergefell v. Hodges held that the Due Process and Equal Protection clauses ensure same-sex couples the right to marriage, as marriage “safeguards children and families, draw[ing] meaning from related rights of childrearing, procreation, and education.”[50] By implicit or explicit means, these cases align with the freedom to procreate that should not be unequally applied to different social or economic groups. Yet, the cases do not apply to accessing expensive tools to procreate. As heterosexuals and the LGBTQ community face trouble accessing expensive ART for vastly different reasons, especially IVF and surrogacy, the equal rights or discrimination argument is not as helpful. For now, it is relevant to adoption cases where religious groups can discriminate.[51] The insurance coverage level may be the best approach. While the social norms adapt and become more inclusive, the elimination of the infertility requirement or changing the definition of infertility could work. Several arguments could address the insurance coverage deficit. Under one argument, a biological or physical inability to conceive exists in the hom*osexual couple trying to achieve a pregnancy. Depending on the wording or a social definition, a caselaw could be developed arguing the medical definition of infertility applies to the LGBTQ community as those trying to procreate are physically unable to conceive as a couple planning to become parents. One counterargument to that approach is that it can be offensive to label people infertile (or disabled) only because of their status as part of a hom*osexual couple.[52] CONCLUSION In the last 50 years, there has been a notable shift in the social acceptance of hom*osexuality.[53] Marriage equality has opened the door for further social and legal equality, as evidenced by the increased number of same-sex couples seeking parenthood “via co-parenting, fostering, adoption or surrogacy” – colloquially referred to as the ‘Gayby Boom’.[54] However, some prejudice and disdain toward LGBTQ+ parenting remain. Equitable access to ART for all people may be attainable as new technology drives costs down, legislators face societal pressure to require broader insurance coverage, and social norms become more inclusive. [1] Eckholm, E. (2015, May 17). The same-sex couple who got a marriage license in 1971. Retrieved April 08, 2021, from https://www.nytimes.com/2015/05/17/us/the-same-sex-couple-who-got-a-marriage-license-in-1971.html [2] Eckholm, E. [3] A brief history of civil rights in the United States: A timeline of the legalization of same-sex marriage in the U.S. (2021, January 27). Retrieved April 08, 2021, from https://guides.ll.georgetown.edu/c.php?g=592919&p=4182201 [4] Eckholm, E. [5] A brief history of civil rights in the United States: A timeline of the legalization of same-sex marriage in the U.S. (2021, January 27). Retrieved April 08, 2021, from https://guides.ll.georgetown.edu/c.php?g=592919&p=4182201 [6] A brief history of civil rights in the United States [7] A brief history of civil rights in the United States [8] Lee, J., & Bolzendahl, C. (2019). Acceptance and Rejection: Patterns of opinion on hom*osexuality in the United States and the world. Sociological Forum, 34(4), 1026-1031. doi:10.1111/socf.12562 [9] Lee, J., et al. [10] Lee, J., et al. [11] Lee, J., et al. [12] Lee, et al. [13] Lee, et al. [14] Lee, et al. [15] LGBTQ family building survey. (2020, July 02). Retrieved April 08, 2021, from https://www.familyequality.org/resources/lgbtq-family-building-survey/ [16] LGBTQ family building survey. (2020, July 02). Retrieved April 08, 2021, from https://www.familyequality.org/resources/lgbtq-family-building-survey/ [17] LGBTQ family building survey. (2020, July 02). Retrieved April 08, 2021, from https://www.familyequality.org/resources/lgbtq-family-building-survey/ [18] Mackenzie, S. C., Wickins-Drazilova, D., & Wickins, J. (2020). The ethics of fertility treatment for same-sex male couples: Considerations for a modern fertility clinic. European Journal of Obstetrics & Gynecology and Reproductive Biology, 244, 71-75. doi:10.1016/j.ejogrb.2019.11.011 [19] Mackenzie, et al. [20] Ollove, M. (2015, March 18). States not eager to regulate fertility industry. Retrieved April 08, 2021, from https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2015/3/18/states-not-eager-to-regulate-fertility-industry [21] Ollove, M. [22] Ollove, M. [23] World Health Organization. (2020, September 14). Infertility. World Health Organization. https://www.who.int/news-room/fact-sheets/detail/infertility [24] Leondires, M. P. (2020, March 19). Fertility insurance Mandates & same-sex couples. Retrieved April 08, 2021, from https://www.gayparentstobe.com/gay-parenting-blog/fertility-insurance-mandates-same-sex-couples/ [25] Lo, W., & Campo-Engelstein, L. (2018). Expanding the Clinical Definition of Infertility to Include Socially Infertile Individuals and Couples. Reproductive Ethics II, 71–83. https://doi.org/10.1007/978-3-319-89429-4_6 [26] Mohapatra, S. (2015). Assisted Reproduction Inequality and Marriage Equality. Chicago-Kent Law Review, 92(1). Retrieved April 08, 2021, from https://scholarship.kentlaw.iit.edu/cgi/viewcontent.cgi?article=4146&context=cklawreview [27] Mohapatra, S. [28] Mohapatra, S. [29] Mohapatra, S. [30] Mohapatra, S. [31] Governor Cuomo announces new actions to expand access to FERTILITY coverage for same sex couples as part of 2021 Women's Agenda. (n.d.). [32] Health Insurers FAQs: IVF and Fertility Preservation Law Q&A Guidance. (n.d.). Retrieved April 08, 2021, from https://www.dfs.ny.gov/apps_and_licensing/health_insurers/ivf_fertility_preservation_law_qa_guidance [33] Governor Cuomo announces new actions to expand access to FERTILITY coverage for same sex couples as part of 2021 Women's Agenda. (n.d.). Retrieved April 08, 2021, from https://www.governor.ny.gov/news/governor-cuomo-announces-new-actions-expand-access-fertility-coverage-same-sex-couples-part#:~:text=February%2011%2C%202021-,Governor%20Cuomo%20Announces%20New%20Actions%20to%20Expand%20Access%20to%20Fertility,Part%20of%202021%20Women's%20Agenda&text=Cuomo%20today%20directed%20the%20Department,wish%20to%20start%20a%20family. [34] Leondires, M. P. [35] Assisted reproduction parentage proceedings information: Academy of Adoption and Assistive Reproduction Attorneys (AAAA). (2019, March 14). Retrieved April 08, 2021, from https://adoptionart.org/assisted-reproduction/parentage-proceedings/ [36] Assisted reproduction parentage proceedings information. [37] Governor Cuomo reminds surrogates and parents of their new Insurance rights and protections During Gestational Surrogacy. (n.d.). Retrieved April 08, 2021, from https://www.governor.ny.gov/news/governor-cuomo-reminds-surrogates-and-parents-their-new-insurance-rights-and-protections-during [38] U.S. Surrogacy Map: Surrogacy laws by state. (2020, December 23). Retrieved April 08, 2021, from https://www.creativefamilyconnections.com/us-surrogacy-law-map/ [39] Mohapatra, S. [40] Beitsch, R. (2017, June 29). As surrogacy surges, new parents seek legal protections. Retrieved April 08, 2021, from https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2017/06/29/as-surrogacy-surges-new-parents-seek-legal-protections#:~:text=Medicaid%20does%20not%20cover%20surrogacy,and%20intended%20parents%20at%20risk. [41] Where to find surrogacy insurance? (2017, November 02). Retrieved April 08, 2021, from https://surrogate.com/intended-parents/surrogacy-laws-and-legal-information/where-can-i-find-surrogacy-insurance/ [42] Mohapatra, S. [43] International covenant on civil and political rights. (n.d.). Retrieved April 08, 2021, from https://www.ohchr.org/en/professionalinterest/pages/ccpr.aspx [44] United Nations. (2003). Human rights in the administration of justice: a manual on human rights for judges, prosecutors and lawyers. [45] U.S. Const. amend. XIV, § 1. [46] Skinner v. Oklahoma, Https://caselaw.findlaw.com/us-supreme-court/316/535.html (June 1, 1942). [47] Skinner v. Oklahoma [48] Skinner v. Oklahoma [49] Eisenstadt v. Baird, Https://www.lexisnexis.com/community/casebrief/p/casebrief-eisenstadt-v-baird (March 22, 1972). [50] Obergefell v. Hodges [51] Higgins, T. (2021, June 17). Supreme Court sides with Catholic adoption agency that refuses to work with LGBT couples. CNBC. https://www.cnbc.com/2021/06/17/supreme-court-sides-with-catholic-adoption-agency-that-refuses-to-work-with-lgbt-couples.html. [52] Bowerman, M., May, A., & Rossman, S. (2017, April 24). Should the definition of infertility be more inclusive? USA Today. https://www.usatoday.com/story/news/nation-now/2017/04/22/same-sex-couples-covered-infertility-insurance/100644092/. [53] Mackenzie, et al. [54] Mackenzie, et al.

Abstract:

There is a moment in Al Gore’s 2006 documentary An Inconvenient Truth devised to expose the sheer audacity of fossil fuel lobby groups in the United States. In their attempts to address significant scientific consensus and growing public concern over climate change, these groups are resorting to what Gore’s film suggests are grotesque distortions of fact. A particular example highlighted in the film is the Competitive Enterprise Institute’s (CPE—a lobby group funded by ExxonMobil) “pro” energy industry advertisem*nt: “Carbon dioxide”, the ad states. “They call it pollution, we call it life.” While on the one hand employing rhetoric against the “inconvenient truth” that carbon dioxide emissions are ratcheting up the Earth’s temperature, these advertisem*nts also pose a question – though perhaps unintended – that is worth addressing. Where does life reside? This is not an issue of essentialism, but relates to the claims, materials and technologies through which life as a political object emerges. The danger of entertaining the vested interests of polluting industry in a discussion of climate change and its biopolitics is countered by an imperative to acknowledge the ways in which multiple positions in the climate change debate invoke and appeal to ‘life’ as the bottom line, or inviolable interest, of their political, social or economic work. In doing so, other questions come to the fore that a politics of climate change framed in terms of moral positions or competing values will tend to overlook. These questions concern the manifold practices of life that constitute the contemporary terrain of the political, and the actors and instruments put in this employ. Who speaks for life? And who or what produces it? Climate change as a matter of concern (Latour) has gathered and generated a host of experts, communities, narratives and technical devices all invested in the administration of life. It is, as Malcom Bull argues, “the paradigmatic issue of the new politics,” a politics which “draws people towards the public realm and makes life itself subject to the caprices of state and market” (2). This paper seeks to highlight the politics of life that have emerged around climate change as a public issue. It will argue that these politics appear in incremental and multiple ways that situate an array of actors and interests as active in both contesting and generating the terms of life: what life is and how we come to know it. This way of thinking about climate change debates opposes a prevalent moralistic framework that reads the practices and discourses of debate in terms of oppositional positions alone. While sympathies may flow in varying directions, especially when it comes to such a highly charged and massively consequential issue as climate change, there is little insight to be had from charging the CPE (for example) with manipulating consumers, or misrepresenting well-known facts. Where new and more productive understandings open up is in relation to the fields through which these gathering actors play out their claims to the project of life. These fields, from the state, to the corporation, to the domestic sphere, reveal a complex network of strategies and devices that seek to secure life in constantly renovated terms. Life Politics Biopolitical scholarship in the wake of Foucault has challenged life as a pre-given uncritical category, and sought to highlight the means through which it is put under question and constituted through varying and composing assemblages of practitioners and practices. Such work regards the project of human well-being as highly complex and technical, and has undertaken to document this empirically through close attention to the everyday ecologies in which humans are enmeshed. This is a political and theoretical project in itself, situating political processes in micro, as well as macro, registers, including daily life as a site of (self) management and governance. Rabinow and Rose refer to biopolitical circuits that draw together and inter-relate the multiple sites and scales operative in the administration of life. These involve not just technologies, rationalities and regimes of authority and control, but also politics “from below” in the form of rights claims and community formation and agitation (198). Active in these circuits, too, are corporate and non-state interests for whom the pursuit of maximising life’s qualities and capabilities has become a concern through which “market relations and shareholder value” are negotiated (Rabinow and Rose 211). As many biopolitical scholars argue, biopower—the strategies through which biopolitics are enacted—is characteristic of the “disciplinary neo-liberalism” that has come to define the modern state, and through which the conduct of conduct is practiced (Di Muzio 305). Foucault’s concept of governmentality describes the devolution of state-based disciplinarity and sovereignty to a host of non-state actors, rationalities and strategies of governing, including the self-managing subject, not in opposition to the state, but contributing to its form. According to Bratich, Packer and McCarthy, everyday life is thus “saturated with governmental techniques” (18) in which we are all enrolled. Unlike regimes of biopolitics identified with what Agamben terms “thanopolitics”—the exercise of biopower “which ultimately rests on the power of some to threaten the death of others” (Rabinow and Rose 198), such as the Nazi’s National Socialism and other eugenic campaigns—governmental arts in the service of “vitalist” biopolitics (Rose 1) are increasingly diffused amongst all those with an “interest” in sustaining life, from organisations to individuals. The integration of techniques of self-governance which ask the individual to work on themselves and their own dispositions with State functions has broadened the base by which life is governed, and foregrounded an unsettled terrain of life claims. Rose argues that medical science is at the forefront of these contemporary biopolitics, and to this effect “has […] been fully engaged in the ethical questions of how we should live—of what kinds of creatures we are, of the kinds of obligations that we have to ourselves and to others, of the kinds of techniques we can and should use to improve ourselves” (20). Asking individuals to self-identify through their medical histories and bodily specificities, medical cultures are also shaping new political arrangements, as communities connected by shared genetics or physical conditions, for instance, emerge, evolve and agitate according to the latest medical knowledge. Yet it is not just medicine that provokes ethical work and new political forms. The environment is a key site for life politics that entails a multi-faceted discourse of obligations and entitlements, across fields and scales of engagement. Calculating Environments In line with neo-liberal logic, environmental discourse concerned with ameliorating climate change has increasingly focused upon the individual as an agent of self-monitoring, to both facilitate government agendas at a distance, and to “self-fashion” in the mode of the autonomous subject, securing against external risks (Ong 501). Climate change is commonly represented as such a risk, to both human and non-human life. A recent letter published by the Royal Australasian College of Physicians in two leading British medical journals, named climate change as the “biggest global health threat of the twenty-first century” (Morton). As I have argued elsewhere (Potter), security is central to dominant cultures of environmental governance in the West; these cultures tie sustainability goals to various and interrelated regimes of monitoring which attach to concepts of what Clark and Stevenson call “the good ecological citizen” (238). Citizenship is thus practiced through strategies of governmentality which call on individuals to invest not just in their own well-being, but in the broader project of life. Calculation is a primary technique through which modern environmental governance is enacted; calculative strategies are seen to mediate risk, according to Foucault, and consequently to “assure living” (Elden 575). Rationalised schemes for self-monitoring are proliferating under climate change and the project of environmentalism more broadly, something which critics of neo-liberalism have identified as symptomatic of the privatisation of politics that liberal governmentality has fostered. As we have seen in Australia, an evolving policy emphasis on individual practices and the domestic sphere as crucial sites of environmental action – for instance, the introduction of domestic water restrictions, and the phasing out of energy-inefficient light bulbs in the home—provides a leading discourse of ethico-political responsibility. The rise of carbon dioxide counting is symptomatic of this culture, and indicates the distributed fields of life management in contemporary governmentality. Carbon dioxide, as the CPE is keen to point out, is crucial to life, but it is also—in too large an amount—a force of destruction. Its management, in vitalist terms, is thus established as an effort to protect life in the face of death. The concept of “carbon footprinting” has been promoted by governments, NGOs, industry and individuals as a way of securing this goal, and a host of calculative techniques and strategies are employed to this end, across a spectrum of activities and contexts all framed in the interests of life. The footprinting measure seeks to secure living via self-policed limits, which also—in classic biopolitical form—shift previously private practices into a public realm of count-ability and accountability. The carbon footprint, like its associates the ecological footprint and the water footprint, has developed as a multi-faceted tool of citizenship beyond the traditional boundaries of the state. Suggesting an ecological conception of territory and of our relationships and responsibilities to this, the footprint, as a measure of resource use and emissions relative to the Earth’s capacities to absorb these, calculates and visualises the “specific qualities” (Elden 575) that, in a spatialised understanding of security, constitute and define this territory. The carbon footprint’s relatively simple remit of measuring carbon emissions per unit of assessment—be that the individual, the corporation, or the nation—belies the ways in which life is formatted and produced through its calculations. A tangled set of devices, practices and discourses is employed to make carbon and thus life calculable and manageable. Treading Lightly The old environmental adage to “tread lightly upon the Earth” has been literalised in the metaphor of the footprint, which attempts both to symbolise environmental practice and to directly translate data in order to meaningfully communicate necessary boundaries for our living. The World Wildlife Fund’s Living Planet Report 2008 exemplifies the growing popularity of the footprint as a political and poetic hook: speaking in terms of our “ecological overshoot,” and the move from “ecological credit to ecological deficit”, the report urges an attendance to our “global footprint” which “now exceeds the world’s capacity to regenerate by about 30 per cent” (1). Angela Crombie’s A Lighter Footprint, an instruction manual for sustainable living, is one of a host of media through which individuals are educated in modes of footprint calculation and management. She presents a range of techniques, including carbon offsetting, shifting to sustainable modes of transport, eating and buying differently, recycling and conserving water, to mediate our carbon dioxide output, and to “show […] politicians how easy it is” (13). Governments however, need no persuading from citizens that carbon calculation is an exercise to be harnessed. As governments around the world move (slowly) to address climate change, policies that instrumentalise carbon dioxide emission and reduction via an auditing of credits and deficits have come to the fore—for example, the European Union Emissions Trading Scheme and the Chicago Climate Exchange. In Australia, we have the currently-under-debate Carbon Pollution Reduction Scheme, a part of which is the Australian Emissions Trading Scheme (AETS) that will introduce a system of “carbon credits” and trading in a market-based model of supply and demand. This initiative will put a price on carbon dioxide emissions, and cap the amount of emissions any one polluter can produce without purchasing further credits. In readiness for the scheme, business initiatives are forming to take advantage of this new carbon market. Industries in carbon auditing and off-setting services are consolidating; hectares of trees, already active in the carbon sequestration market, are being cultivated as “carbon sinks” and key sites of compliance for polluters under the AETS. Governments are also planning to turn their tracts of forested public land into carbon credits worth billions of dollars (Arup 7). The attachment of emission measures to goods and services requires a range of calculative experts, and the implementation of new marketing and branding strategies, aimed at conveying the carbon “health” of a product. The introduction of “food mile” labelling (the amount of carbon dioxide emitted in the transportation of the food from source to consumer) in certain supermarkets in the United Kingdom is an example of this. Carbon risk analysis and management programs are being introduced across businesses in readiness for the forthcoming “carbon economy”. As one flyer selling “a suite of carbon related services” explains, “early action will give you the edge in understanding and mitigating the risks, and puts you in a prime position to capitalise on the rewards” (MGI Business Solutions Worldwide). In addition, lobby groups are working to ensure exclusions from or the free allocation of permits within the proposed AETS, with degrees of compulsion applied to different industries – the Federal Government, for instance, will provide a $3.9 billion compensation package for the electric power sector when the AETS commences, to enable their “adjustment” to this carbon regime. Performing Life Noortje Mares provides a further means of thinking through the politics of life in the context of climate change by complicating the distinction between public and private interest. Her study of “green living experiments” describes the rise of carbon calculation in the home in recent years, and the implementation of technologies such as the smart electricity meter that provides a constantly updating display of data relating to amounts and cost of energy consumed and the carbon dioxide emitted in the routines of domestic life. Her research tracks the entry of these personal calculative regimes into public life via internet forums such as blogs, where individuals notate or discuss their experiences of pursing low-carbon lifestyles. On the one hand, these calculative practices of living and their public representation can be read as evidencing the pervasive neo-liberal governmentality at work in contemporary environmental practice, where individuals are encouraged to scrupulously monitor their domestic cultures. The rise of auditing as a technology of self, and more broadly as a technique of public accountability, has come under fire for its “immunity-granting role” (Charkiewicz 79), where internal audits become substituted for external compliance and regulation. Mares challenges this reading, however, by demonstrating the ways in which green living experiments “transform everyday material practices into practices of public involvement” that (118) don’t resolve or pin down relations between the individual, the non-human environment, and the social, or reveal a mappable flow of actions and effects between the public realm and the home. The empirical modes of publicity that these individuals employ, “the careful recording of measurements and the reliable descriptions of sensory observation, so as to enable ‘virtual witnessing’ by wider audiences”, open up to much more complex understandings than one of calculative self-discipline at work. As “instrument[s] of public involvement” (120), the experiments that Mares describe locate the politics of life in the embodied socio-material entanglements of the domestic sphere, in arrangements of humans and non-human technologies. Such arrangements, she suggests, are ontologically productive in that they introduce “not only new knowledge, but also new entities […] to society” (119), and as such these experiments and the modes of calculation they employ become active in the composition of reality. Recent work in economic sociology and cultural studies has similarly contended that calculation, far from either a naturalised or thoroughly abstract process, relies upon a host of devices, relations, and techniques: that is, as Gay Hawkins explains, calculative processes “have to be enacted” (108). Environmental governmentality in the service of securing life is a networked practice that draws in a host of actors, not a top-down imposition. The institution of carbon economies and carbon emissions as a new register of public accountability, brings alternative ways to calculate the world into being, and consequently re-calibrates life as it emerges from these heterogeneous arrangements. All That Gathers Latour writes that we come to know a matter of concern by all the things that gather around it (Latour). This includes the human, as well as the non-human actors, policies, practices and technologies that are put to work in the making of our realities. Climate change is routinely represented as a threat to life, with predicted (and occurring) species extinction, growing numbers of climate change refugees, dispossessed from uninhabitable lands, and the rise of diseases and extreme weather scenarios that put human life in peril. There is no doubt, of course, that climate change does mean death for some: indeed, there are thanopolitical overtones in inequitable relations between the fall-out of impacts from major polluting nations on poorer countries, or those much more susceptible to rising sea levels. Biosocial equity, as Bull points out, is a “matter of being equally alive and equally dead” (2). Yet in the biopolitical project of assuring living, life is burgeoning around the problem of climate change. The critique of neo-liberalism as a blanketing system that subjects all aspects of life to market logic, and in which the cynical techniques of industry seek to appropriate ethico-political stances for their own material ends, are insufficient responses to what is actually unfolding in the messy terrain of climate change and its biopolitics. What this paper has attempted to show is that there is no particular purchase on life that can be had by any one actor who gathers around this concern. Varying interests, ambitions, and intentions, without moral hierarchy, stake their claim in life as a constantly constituting site in which they participate, and from this perspective, the ways in which we understand life to be both produced and managed expand. This is to refuse either an opposition or a conflation between the market and nature, or the market and life. It is also to argue that we cannot essentialise human-ness in the climate change debate. For while human relations with animals, plants and weathers may make us what we are, so too do our relations with (in a much less romantic view) non-human things, technologies, schemes, and even markets—from carbon auditing services, to the label on a tin on the supermarket shelf. As these intersect and entangle, the project of life, in the new politics of climate change, is far from straightforward. References An Inconvenient Truth. Dir. Davis Guggenheim. Village Roadshow, 2006. Arup, Tom. “Victoria Makes Enormous Carbon Stocktake in Bid for Offset Billions.” The Age 24 Sep. 2009: 7. Bratich, Jack Z., Jeremy Packer, and Cameron McCarthy. “Governing the Present.” Foucault, Cultural Studies and Governmentality. Ed. Bratich, Packer and McCarthy. Albany: State University of New York Press, 2003. 3-21. Bull, Malcolm. “Globalization and Biopolitics.” New Left Review 45 (2007): 12 May 2009 . < http://newleftreview.org/?page=article&view=2675 >. Charkiewicz, Ewa. “Corporations, the UN and Neo-liberal Bio-politics.” Development 48.1 (2005): 75-83. Clark, Nigel, and Nick Stevenson. “Care in a Time of Catastrophe: Citizenship, Community and the Ecological Imagination.” Journal of Human Rights 2.2 (2003): 235-246. Crombie, Angela. A Lighter Footprint: A Practical Guide to Minimising Your Impact on the Planet. Carlton North, Vic.: Scribe, 2007. Di Muzio, Tim. “Governing Global Slums: The Biopolitics of Target 11.” Global Governance. 14.3 (2008): 305-326. Elden, Stuart. “Governmentality, Calculation and Territory.” Environment and Planning D: Society and Space 25 (2007): 562-580. Hawkins, Gay. The Ethics of Waste: How We Relate to Rubbish. Sydney: University of New South Wales Press, 2006. Latour, Bruno. “Why Has Critique Run Out of Steam?: From Matters of Fact to Matters of Concern.” Critical Inquiry 30.2 (2004): 225-248. Mares, Noortje. “Testing Powers of Engagement: Green Living Experiments, the Ontological Turn and the Undoability and Involvement.” European Journal of Social Theory 12.1 (2009): 117-133. MGI Business Solutions Worldwide. “Carbon News.” Adelaide. 2 Aug. 2009. Ong, Aihwa. “Mutations in Citizenship.” Theory, Culture and Society 23.2-3 (2006): 499-505. Potter, Emily. “Footprints in the Mallee: Climate Change, Sustaining Communities, and the Nature of Place.” Landscapes and Learning: Place Studies in a Global World. Ed. Margaret Somerville, Kerith Power and Phoenix de Carteret. Sense Publishers. Forthcoming. Rabinow, Paul, and Nikolas Rose. “Biopower Today.” Biosocieties 1 (2006): 195-217. Rose, Nikolas. “The Politics of Life Itself.” Theory, Culture and Society 18.6 (2001): 1-30. World Wildlife Fund. Living Planet Report 2008. Switzerland, 2008.

Abstract:

As a scholarly discourse, transmedia storytelling relies heavily on conservative constructions of authorship that laud corporate architects and patriarchs such as George Lucas and J.J. Abrams as exemplars of “the creator.” This piece argues that transmedia theory works to construct patriarchal ideals of individual authorship to the detriment of alternative conceptions of transmediality, storyworlds, and authorship. The genesis for this piece was our struggle to find a transmedia storyworld that we were both familiar with, that also qualifies as “legitimate” transmedia in the eyes of our prospective scholarly readers. After trying to wrangle our various interests, fandoms, and areas of expertise into harmony, we realized we were exerting more effort in this process of validating stories as transmedia than actually examining how stories spread across various platforms, how they make meanings, and what kinds of pleasures they offer audiences. Authorship is a definitive criterion of transmedia storytelling theory; it is also an academic red herring. We were initially interested in investigating the possible overdeterminations between the healthcare industry and Breaking Bad (2008-2013). The series revolves around a high school chemistry teacher who launches a successful meth empire as a way to pay for his cancer treatments that a dysfunctional US healthcare industry refuses to fund. We wondered if the success of the series and the timely debates on healthcare raised in its reception prompted any PR response from or discussion among US health insurers. However, our concern was that this dynamic among medical and media industries would not qualify as transmedia because these exchanges were not authored by Vince Gilligan or any of the credited creators of Breaking Bad. Yet, why shouldn’t such interfaces between the “real world” and media fiction count as part of the transmedia story that is Breaking Bad? Most stories are, in some shape or form, transmedia stories at this stage, and transmedia theory acknowledges there is a long history to this kind of practice (Freeman). Let’s dispense with restrictive definitions of transmediality and turn attention to how storytelling behaves in a digital era, that is, the processes of creating, disseminating and amending stories across many different media, the meanings and forms such media and communications produce, and the pleasures they offer audiences.Can we think about how health insurance companies responded to Breaking Bad in terms of transmedia storytelling? Defining Transmedia Storytelling via AuthorshipThe scholarly concern with defining transmedia storytelling via a strong focus on authorship has traced slight distinctions between seriality, franchising, adaptation and transmedia storytelling (Jenkins, “Transmedia Storytelling;” Johnson, “Media Franchising”). However, the theoretical discourse on authorship itself and these discussions of the tensions between forms are underwritten by a gendered bias. Indeed, the very concept of transmediality may be a gendered backlash against the rising prominence of seriality as a historically feminised mode of storytelling, associated with television and serial novels.Even with the move towards traditionally lowbrow, feminized forms of trans-serial narrative, the majority of academic and popular criticism of transmedia storytelling reproduces and reinstates narratives of male-centred, individual authorship that are historically descended from theorizations of the auteur. Auteur theory, which is still considered a legitimate analytical framework today, emerged in postwar theorizations of Hollywood film by French critics, most prominently in the journal Cahiers du Cinema, and at the nascence of film theory as a field (Cook). Auteur theory surfaced as a way to conceptualise aesthetic variation and value within the Fordist model of the Hollywood studio system (Cook). Directors were identified as the ultimate author or “creative source” if a film sufficiently fitted a paradigm of consistent “vision” across their oeuvre, and they were thus seen as artists challenging the commercialism of the studio system (Cook). In this way, classical auteur theory draws a dichotomy between art and authorship on one side and commerce and corporations on the other, strongly valorising the former for its existence within an industrial context dominated by the latter. In recent decades, auteurist notions have spread from film scholarship to pervade popular discourses of media authorship. Even though transmedia production inherently disrupts notions of authorship by diffusing the act of creation over many different media platforms and texts, much of the scholarship disproportionately chooses to vex over authorship in a manner reminiscent of classical auteur theory.In scholarly terms, a chief distinction between serial storytelling and transmedia storytelling lies in how authorship is constructed in relation to the text: serial storytelling has long been understood as relying on distributed authorship (Hilmes), but transmedia storytelling reveres the individual mastermind, or the master architect who plans and disseminates the storyworld across platforms. Henry Jenkins’ definition of transmedia storytelling is multifaceted and includes, “the systematic dispersal of multiple textual elements across many channels, which reflects the synergies of media conglomeration, based on complex story-worlds, and coordinated authorial design of integrated elements” (Jenkins, “Transmedia Storytelling”). Jenkins is perhaps the most pivotal figure in developing transmedia studies in the humanities to date and a key reference point for most scholars working in this subfield.A key limitation of Jenkins’ definition of transmedia storytelling is its emphasis on authorship, which persists in wider scholarship on transmedia storytelling. Jenkins focuses on the nature of authorship as a key characteristic of transmedia productions that distinguishes them from other kinds of intertextual and serial stories:Because transmedia storytelling requires a high degree of coordination across the different media sectors, it has so far worked best either in independent projects where the same artist shapes the story across all of the media involved or in projects where strong collaboration (or co-creation) is encouraged across the different divisions of the same company. (Jenkins, “Transmedia Storytelling”)Since the texts under discussion are commonly large in their scale, budget, and the number of people employed, it is reductive to credit particular individuals for this work and implicitly dismiss the authorial contributions of many others. Elaborating on the foundation set by Jenkins, Matthew Freeman uses Foucauldian concepts to describe two “author-functions” focused on the role of an author in defining the transmedia text itself and in marketing it (Freeman 36-38). Scott, Evans, Hills, and Hadas similarly view authorial branding as a symbolic industrial strategy significant to transmedia storytelling. Interestingly, M.J. Clarke identifies the ways transmedia television texts invite audiences to imagine a central mastermind, but also thwart and defer this impulse. Ultimately, Freeman argues that identifiable and consistent authorship is a defining characteristic of transmedia storytelling (Freeman 37), and Suzanne Scott argues that transmedia storytelling has “intensified the author’s function” from previous eras (47).Industry definitions of transmediality similarly position authorship as central to transmedia storytelling, and Jenkins’ definition has also been widely mobilised in industry discussions (Jenkins, “Transmedia” 202). This is unsurprising, because defining authorial roles has significant monetary value in terms of remuneration and copyright. In speaking to the Producers Guild of America, Jeff Gomez enumerated eight defining characteristics of transmedia production, the very first of which is, “Content is originated by one or a very few visionaries” (PGA Blog). Gomez’s talk was part of an industry-driven bid to have “Transmedia Producer” recognised by the trade associations as a legitimate and significant role; Gomez was successful and is now recognised as a transmedia producer. Nevertheless, his talk of “visionaries” not only situates authorship as central to transmedia production, but constructs authorship in very conservative, almost hagiographical terms. Indeed, Leora Hadas analyses the function of Joss Whedon’s authorship of Marvel's Agents of S.H.I.E.L.D (2013-) as a branding mechanism and argues that authors are becoming increasingly visible brands associated with transmedia stories.Such a discourse of authorship constructs individual figures as artists and masterminds, in an idealised manner that has been strongly critiqued in the wake of poststructuralism. It even recalls tired scholarly endeavours of divining authorial intention. Unsurprisingly, the figures valorised for their transmedia authorship are predominantly men; the scholarly emphasis on authorship thus reinforces the biases of media industries. Further, it idolises these figures at the expense of unacknowledged and under-celebrated female writers, directors and producers, as well as those creative workers labouring “below the line” in areas like production design, art direction, and special effects. Far from critiquing the biases of industry, academic discourse legitimises and lauds them.We hope that scholarship on transmedia storytelling might instead work to open up discourses of creation, production, authorship, and collaboration. For a story to qualify as transmedia is it even necessary to have an identifiable author? Transmedia texts and storyworlds can be genuinely collaborative or authorless creations, in which the harmony of various creators’ intentions may be unnecessary or even undesirable. Further, industry and academics alike often overlook examples of transmedia storytelling that might be considered “lowbrow.” For example, transmedia definitions should include Antonella the Uncensored Reviewer, a relatively small-scale, forty-something, plus size, YouTube channel producer whose persona is dispersed across multiple formats including beauty product reviews, letter writing, as well as interactive sex advice live casts. What happens when we blur the categories of author, celebrity, brand, and narrative in scholarship? We argue that these roles are substantially blurred in media industries in which authors like J.J. Abrams share the limelight with their stars as well as their corporate affiliations, and all “brands” are sutured to the storyworld text. These various actors all shape and are shaped by the narrative worlds they produce in an author-storyworld nexus, in which authorship includes all people working to produce the storyworld as well as the corporation funding it. Authorship never exists inside the limits of a single, male mind. Rather it is a field of relations among various players and stakeholders. While there is value in delineating between these roles for purposes of analysis and scholarly discussion, we should acknowledge that in the media industry, the roles of various stakeholders are increasingly porous.The current academic discourse of transmedia storytelling reconstructs old social biases and hierarchies in contexts where they might be most vulnerable to breakdown. Scott argues that,despite their potential to demystify and democratize authorship between producers and consumers, transmedia stories tend to reinforce boundaries between ‘official’ and ‘unauthorized’ forms of narrative expansion through the construction of a single author/textual authority figure. (44)Significantly, we suggest that it is the theorisation of transmedia storytelling that reinforces (or in fact constructs anew) an idealised author figure.The gendered dimension of the scholarly distinction between serialised (or trans-serial) and transmedial storytelling builds on a long history in the arts and the academy alike. In fact, an important precursor of transmedia narratives is the serialized novel of the Victorian era. The literature of Charlotte Brontë, George Eliot and Harriet Beecher Stowe was published in serial form and among the most widely read of the Victorian era in Western culture (Easley; Flint 21; Hilmes). Yet, these novels are rarely given proportional credit in what is popularly taught as the Western literary canon. The serial storytelling endemic to television as a medium has similarly been historically dismissed and marginalized as lowbrow and feminine (at least until the recent emergence of notions of the industrial role of the “showrunner” and the critical concept of “quality television”). Joanne Morreale outlines how trans-serial television examples, like The Dick Van Dyke Show, which spread their storyworlds across a number of different television programs, offer important precursors to today’s transmedia franchises (Morreale). In television’s nascent years, the anthology plays of the 1940s and 50s, which were discrete, unconnected hour-length stories, were heralded as cutting-edge, artistic and highbrow while serial narrative forms like the soap opera were denigrated (Boddy 80-92). Crucially, these anthology plays were largely created by and aimed at males, whereas soap operas were often created by and targeted to female audiences. The gendered terms in which various genres and modes of storytelling are discussed have implications for the value assigned to them in criticism, scholarship and culture more broadly (Hilmes; Kuhn; Johnson, “Devaluing”). Transmedia theory, as a scholarly discourse, betrays similarly gendered leanings as early television criticism, in valorising forms of transmedia narration that favour a single, male-bodied, and all-powerful author or corporation, such as George Lucas, Jim Henson or Marvel Comics.George Lucas is often depicted in scholarly and popular discourses as a headstrong transmedia auteur, as in the South Park episode ‘The China Problem’ (2008)A Circle of Men: Fans, Creators, Stories and TheoristsInterestingly, scholarly discourse on transmedia even betrays these gendered biases when exploring the engagement and activity of audiences in relation to transmedia texts. Despite the definitional emphasis on authorship, fan cultures have been a substantial topic of investigation in scholarly studies of transmedia storytelling, with many scholars elevating fans to the status of author, exploring the apparent blurring of these boundaries, and recasting the terms of these relationships (Scott; Dena; Pearson; Stein). Most notably, substantial scholarly attention has traced how transmedia texts cultivate a masculinized, “nerdy” fan culture that identifies with the male-bodied, all-powerful author or corporation (Brooker, Star Wars, Using; Jenkins, Convergence). Whether idealising the role of the creators or audiences, transmedia theory reinforces gendered hierarchies. Star Wars (1977-) is a pivotal corporate transmedia franchise that significantly shaped the convergent trajectory of media industries in the 20th century. As such it is also an anchor point for transmedia scholarship, much of which lauds and legitimates the creative work of fans. However, in focusing so heavily on the macho power struggle between George Lucas and Star Wars fans for authorial control over the storyworld, scholarship unwittingly reinstates Lucas’s status as sole creator rather than treating Star Wars’ authorship as inherently diffuse and porous.Recent fan activity surrounding animated adult science-fiction sitcom Rick and Morty (2013-) further demonstrates the macho culture of transmedia fandom in practice and its fascination with male authors. The animated series follows the intergalactic misadventures of a scientific genius and his grandson. Inspired by a seemingly inconsequential joke on the show, some of its fans began to fetishize a particular, limited-edition fast food sauce. When McDonalds, the actual owner of that sauce, cashed in by promoting the return of its Szechuan Sauce, a macho culture within the show’s fandom reached its zenith in the forms of hostile behaviour at McDonalds restaurants and online (Alexander and Kuchera). Rick and Morty fandom also built a misogynist reputation for its angry responses to the show’s efforts to hire a writer’s room that gave equal representation to women. Rick and Morty trolls doggedly harassed a few of the show’s female writers through 2017 and went so far as to post their private information online (Barsanti). Such gender politics of fan cultures have been the subject of much scholarly attention (Johnson, “Fan-tagonism”), not least in the many conversations hosted on Jenkins’ blog. Gendered performances and readings of fan activity are instrumental in defining and legitimating some texts as transmedia and some creators as masterminds, not only within fandoms but also in the scholarly discourse.When McDonalds promoted the return of their Szechuan Sauce, in response to its mention in the story world of animated sci-fi sitcom Rick and Morty, they contributed to transmedia storytelling.Both Rick and Morty and Star Wars are examples of how masculinist fan cultures, stubborn allegiances to male authorship, and definitions of transmedia converge both in academia and popular culture. While Rick and Morty is, in reality, partly female-authored, much of its media image is still anchored to its two male “creators,” Justin Roiland and Dan Harmon. Particularly in the context of #MeToo feminism, one wonders how much female authorship has been elided from existing storyworlds and, furthermore, what alternative examples of transmedia narration are exempt from current definitions of transmediality.The individual creator is a social construction of scholarship and popular discourse. This imaginary creator bears little relation to the conditions of creation and production of transmedia storyworlds, which are almost always team written and collectively authored. Further, the focus on writing itself elides the significant contributions of many creators such as those in production design (Bevan). Beyond that, what creative credit do focus groups deserve in shaping transmedia stories and their multi-layered, multi-platformed reaches? Is authorship, or even credit, really the concept we, as scholars, want to invest in when studying these forms of narration and mediation?At more symbolic levels, the seemingly exhaustless popular and scholarly appetite for male-bodied authorship persists within storyworlds themselves. The transmedia examples popularly and academically heralded as “seminal” centre on patrimony, patrilineage, and inheritance (i.e. Star Wars [1977-] and The Lord of the Rings [1937-]). Of course, Harry Potter (2001-2009) is an outlier as the celebrification of J.K. Rowling provides a strong example of credited female authorship. However, this example plays out many of the same issues, albeit the franchise is attached to a woman, in that it precludes many of the other creative minds who have helped shape Harry Potter’s world. How many more billions of dollars need we invest in men writing about the mysteries of how other men spread their genetic material across fictional universes? Moreover, transmedia studies remains dominated by academic men geeking out about how fan men geek out about how male creators write about mostly male characters in stories about … men. There are other stories waiting to be told and studied through the practices and theories of transmedia. These stories might be gender-inclusive and collective in ways that challenge traditional notions of authorship, control, rights, origin, and property.Obsession with male authorship, control, rights, origin, paternity and property is recognisible in scholarship on transmedia storytelling, and also symbolically in many of the most heralded examples of transmedia storytelling, such as the Star Wars saga.Prompting Broader DiscussionThis piece urges the development of broader understandings of transmedia storytelling. A range of media scholarship has already begun this work. Jonathan Gray’s book on paratexts offers an important pathway for such scholarship by legitimating ancillary texts, like posters and trailers, that uniquely straddle promotional and feature content platforms (Gray). A wave of scholars productively explores transmedia storytelling with a focus on storyworlds (Scolari; Harvey), often through the lens of narratology (Ryan; Ryan and Thon). Scolari, Bertetti, and Freeman have drawn together a media archaeological approach and a focus on transmedia characters in an innovative way. We hope to see greater proliferation of focuses and perspectives for the study of transmedia storytelling, including investigations that connect fictional and non-fictional worlds and stories, and a more inclusive variety of life experiences.Conversely, new scholarship on media authorship provides fresh directions, models, methods, and concepts for examining the complexity and messiness of this topic. A growing body of scholarship on the functions of media branding is also productive for reconceptualising notions of authorship in transmedia storytelling (Bourdaa; Dehry Kurtz and Bourdaa). Most notably, A Companion to Media Authorship edited by Gray and Derek Johnson productively interrogates relationships between creative processes, collaborative practices, production cultures, industrial structures, legal frameworks, and theoretical approaches around media authorship. Its case studies begin the work of reimagining of the role of authorship in transmedia, and pave the way for further developments (Burnett; Gordon; Hilmes; Stein). In particular, Matt Hills’s case study of how “counter-authorship” was negotiated on Torchwood (2006-2011) opens up new ways of thinking about multiple authorship and the variety of experiences, contributions, credits, and relationships this encompasses. Johnson’s Media Franchising addresses authorship in a complex way through a focus on social interactions, without making it a defining feature of the form; it would be significant to see a similar scholarly treatment of transmedia. At the very least, scholarly attention might turn its focus away from the very patriarchal activity of discussing definitions among a coterie and, instead, study the process of spreadability of male-centred transmedia storyworlds (Jenkins, Ford, and Green). Given that transmedia is not historically unique to the digital age, scholars might instead study how spreadability changes with the emergence of digitality and convergence, rather than pontificating on definitions of adaptation versus transmedia and cinema versus media.We urge transmedia scholars to distance their work from the malignant gender politics endemic to the media industries and particularly global Hollywood. The confluence of gendered agendas in both academia and media industries works to reinforce patriarchal hierarchies. The humanities should offer independent analysis and critique of how media industries and products function, and should highlight opportunities for conceiving of, creating, and treating such media practices and texts in new ways. As such, it is problematic that discourses on transmedia commonly neglect the distinction between what defines transmediality and what constitutes good examples of transmedia. This blurs the boundaries between description and prescription, taxonomy and hierarchy, analysis and evaluation, and definition and taste. Such discourses blinker us to what we might consider to be transmedia, but also to what examples of “good” transmedia storytelling might look like.Transmedia theory focuses disproportionately on authorship. This restricts a comprehensive understanding of transmedia storytelling, limits the lenses we bring to it, obstructs the ways we evaluate transmedia stories, and impedes how we imagine the possibilities for both media and storytelling. Stories have always been transmedial. What changes with the inception of transmedia theory is that men can claim credit for the stories and for all the work that many people do across various sectors and industries. It is questionable whether authorship is important to transmedia, in which creation is most often collective, loosely planned (at best) and diffused across many people, skill sets, and sectors. While Jenkins’s work has been pivotal in the development of transmedia theory, this is a ripe moment for the diversification of theoretical paradigms for understanding stories in the digital era.ReferencesAlexander, Julia, and Ben Kuchera. “How a Rick and Morty Joke Led to a McDonald’s Szechuan Sauce Controversy.” Polygon 4 Apr. 2017. <https://www.polygon.com/2017/10/12/16464374/rick-and-morty-mcdonalds-szechuan-sauce>.Aristotle. Aristotle's Poetics. New York: Hill and Wang, 1961. Barsanti, Sami. “Dan Harmon Is Pissed at Rick and Morty Fans Harassing Female Writers.” The AV Club 21 Sep. 2017. <https://www.avclub.com/dan-harmon-is-pissed-at-rick-and-morty-fans-for-harassi-1818628816>.Bevan, Alex. “Nostalgia for Pre-Digital Media in Mad Men.” Television & New Media 14.6 (2013): 546-559.Boddy, William. Fifties Television: The Industry and Its Critics. Chicago: U of Illinois P, 1993.Bourdaa, Mélanie. “This Is Not Marketing. This Is HBO: Branding HBO with Transmedia Storytelling.” Networking Knowledge: Journal of the MeCCSA Postgraduate Network, 7.1 (2014). <http://www.ojs.meccsa.org.uk/index.php/netknow/article/view/328>.Brooker, Will. Star Wars. London: BFI Classics, 2009. ———. Using the Force: Creativity, Community and Star Wars Fans. New York: Bloomsbury, 2003.Burnett, Colin. “Hidden Hands at Work: Authorship, the Intentional Flux and the Dynamics of Collaboration.” In A Companion to Media Authorship, eds. Jonathan Gray and Derek Johnson, 112-133. Oxford: Wiley, 2013.Clark, M.J. Transmedia Television: New Trends in Network Serial Production. New York: Bloomsbury, 2012.Cook, Pam. “Authorship and Cinema.” In The Cinema Book, 2nd ed., ed. Pam Cook, 235-314. London: BFI, 1999.Dena, Christy. Transmedia Practice: Theorising the Practice of Expressing a Fictional World across Distinct Media and Environments. PhD Thesis, University of Sydney. 2009.Dehry Kurtz, B.W.L., and Mélanie Bourdaa (eds). The Rise of Transtexts: Challenges and Opportunities. New York: Taylor and Francis, 2016.Evans, Elizabeth. Transmedia Television: Audiences, New Media and Daily Life. New York: Taylor and Francis, 2011.Easley, Alexis. First Person Anonymous. New York: Routledge, 2016.Flint, Kate. “The Victorian Novel and Its Readers.” In The Cambridge Companion to the Victorian Novel, ed. Deirdre David, 13-35. Cambridge: Cambridge UP, 2012. Freeman, Matthew. Historicising Transmedia Storytelling: Early Twentieth Century Storyworlds. New York: Taylor and Francis, 2016.Gordon, Ian. “Comics, Creators and Copyright: On the Ownership of Serial Narratives by Multiple Authors.” In A Companion to Media Authorship, eds. Jonathan Gray and Derek Johnson, 221-236. Oxford: Wiley, 2013.Gray, Jonathan. Show Sold Separately: Promos, Spoilers and Other Media Texts. New York: New York UP, 2010.Gray, Jonathan, and Derek Johnson (eds.). A Companion to Media Authorship. Chichester: Wiley, 2013.Hadas, Leora. “Authorship and Authenticity in the Transmedia Brand: The Case of Marvel’s Agents of S.H.I.E.L.D.” Networking Knowledge: Journal of the MeCCSA Postgraduate Network, 7.1 (2014). <http://www.ojs.meccsa.org.uk/index.php/netknow/article/view/332>.Harvey, Colin. Fantastic Transmedia: Narrative, Play and Memory across Fantasy Storyworlds. London: Palgrave, 2015.Hills, Matt. “From Chris Chibnall to Fox: Torchwood’s Marginalised Authors and Counter-Discourses of TV Authorship.” In A Companion to Media Authorship, eds. Jonathan Gray and Derek Johnson, 200-220. Oxford: Wiley, 2013.Hilmes, Michelle. “Never Ending Story: Authorship, Seriality and the Radio Writers Guild.” In A Companion to Media Authorship, eds. Jonathan Gray and Derek Johnson, 181-199. Oxford: Wiley, 2013.Jenkins, Henry. “Transmedia 202: Further Reflections.” Confessions of an Aca-Fan. 31 July 2011. <http://henryjenkins.org/blog/2011/08/defining_transmedia_further_re.html>.———. “Transmedia Storytelling 101.” Confessions of an Aca-Fan. 21 Mar. 2007. <http://henryjenkins.org/blog/2007/03/transmedia_storytelling_101.html>.———. Convergence Culture: Where Old and New Media Collide. New York: New York University Press, 2006.———, Sam Ford, and Joshua Green. Spreadable Media: Creating Value and Meaning in a Networked Culture. New York: New York UP, 2013.Johnson, Derek. Media Franchising: Creative License and Collaboration in the Culture Industries. New York: New York UP, 2013.———. “Fan-tagonism: Factions, Institutions, and Constitutive Hegemonies of Fandom.” In Fandom: Identities and Communities in a Mediated World, eds. Jonathan Gray, Cornell Sandvoss, and C. Lee Harrington, 285-300. New York: New York UP, 2007.———. “Devaluing and Revaluing Seriality: The Gendered Discourses of Media Franchising.” Media, Culture & Society, 33.7 (2011): 1077-1093. Kuhn, Annette. “Women’s Genres: Melodrama, Soap Opera and Theory.” In Feminist Television Criticism: A Reader, eds. Charlotte Brunsdon and Lynn Spigel, 225-234. 2nd ed. Maidenhead: Open UP, 2008.Morreale, Joanne. The Dick Van Dyke Show. Detroit, MI: Wayne State UP, 2015.Pearson, Roberta. “Fandom in the Digital Era.” Popular Communication, 8.1 (2010): 84-95. DOI: 10.1080/15405700903502346.Producers Guild of America, The. “Defining Characteristics of Trans-Media Production.” PGA NMC Blog. 2 Oct. 2007. <http://pganmc.blogspot.com.au/2007/10/pga-member-jeff-gomez-left-assembled.html>.Rodham Clinton, Hillary. What Happened. New York: Simon & Schuster, 2017.Ryan, Marie-Laure. “Transmedial Storytelling and Transficitonality.” Poetics Today, 34.3 (2013): 361-388. DOI: 10.1215/03335372-2325250. ———, and Jan-Noȅl Thon (eds.). 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Abstract:

Apparently some people upon coming across [Down Syndrome dolls] were offended. […] Still, it’s curious, and telling, what gives offense. Was it the shock of seeing a doll not modeled on the normative form that caused such offense? Or the assumption that any representation of Down Syndrome must naturally intend ridicule? Either way, it would seem that we might benefit from an examination of such reactions—especially as they relate to instances of the idealisation of the human form that dolls […] represent. (Faulkner) IntroductionWhen Joanne Faulkner describes public criticism of dolls designed to look like they have Down Syndrome, she draws attention to the need for an examination of the way discourses of disability are communicated. She calls, in particular, for an interrogation of people’s reactions to the disruption of the idealised human form that most dolls adopt. The case of Down Syndrome dolls is fascinating, yet critical discussion of these dolls from a disability or cultural studies perspective is conspicuously lacking. To address this lack, this paper draws upon theories of the cultural construction of disability, beauty, and normalcy (Garland-Thompson, Kumari Campbell, Wendell), to explore the way ideas about disability are communicated and circulated. The dominant discourse of disability is medical, where people are diagnosed or identified as disabled if they meet certain criteria, or lists of physical impairments. These lists have a tendency to subsume the disparate qualities of disability (Garland-Thompson) and remove people considered disabled from the social and cultural world in which they live (Snyder and Mitchell 377). While Down Syndrome dolls, produced by Downi Creations and Helga’s European Speciality Toys (HEST) in the US and Europe respectively, are reflective of such lists, they also perform the cultural function of increasing the visibility of disability in society. In addition, the companies distributing these dolls state that they are striving for greater inclusion of people with Down Syndrome (Collins, Parks). However, the effect of the dominance of medicalised discourses of disability can be seen in the public reaction to these dolls. This paper seeks also to bring an interrogation of disability into dialogue with a critical analysis of the discursive function of lists.The paper begins with a consideration of lists as they have been used to define disability and organise knowledge within medicine, and the impact this has had on the position of disability within society. In order to differentiate itself from medical discourses, the emerging social model also relied on lists during the 1980s and 1990s. However, these lists also decontextualised disability by ignoring certain factors for political advantage. The social model, like medicine, tended to ignore the diversity of humanity it was apparently arguing for (Snyder and Mitchell 377). The focus then shifts to the image of Down Syndrome dolls and the ensuing negative interpretation of them focusing, in particular, on reader comments following a Mail Online (Fisher) article. Although the dolls were debated across the blogosphere on a number of disability, special needs parenting, and Down Syndrome specific blogs, people commenting on The Mail Online—a UK based conservative tabloid newspaper—offer useful insights into communication and meaning making around disability. People establish meanings about disability through communication (Hedlund 766). While cultural responses to disability are influenced by a number of paradigms of interpretation such as superstition, religion, and fear, this paper is concerned with the rejection of bodies that do not ascribe to cultural standards of beauty and seeks to explore this paradigm alongside and within the use of lists by the various models of disability. This paper interrogates the use of lists in the way meanings about disability are communicated through the medical diagnostic list, the Down Syndrome dolls, and reactions to them. Each list reduces the disparate qualities and experiences of disability, yet as a cultural artefact, these dolls go some way towards recognising the social and cultural world that medicalised discourses of disability ignore. Drawing on the use of lists within different frameworks of disability, this paper contrasts the individual, or medical, model of disability (that being disabled is a personal problem) with the social model (that exclusion due to disability is social oppression). Secondly, the paper compares the characteristics of Down Syndrome dolls with actual characteristics of Down Syndrome to conclude that these features aim to be a celebrated, not stigmatised, aspect of the doll. By reasserting alternative notions of the body, the dolls point towards a more diverse society where disability can be understood in relation to social oppression. However, these aims of celebration have not automatically translated to a more diverse understanding. This paper aims to complicate perceptions of disability beyond a rudimentary list of characteristics through a consideration of the negative public response to these dolls. These responses are an example of the cultural subjugation of disability.Lists and the Creation of Normative Cultural ValuesFor Robert Belknap, lists are the dominant way of “organizing data relevant to human functioning” (8). While lists are used in a number of ways and for a variety of purposes, Belknap divides lists into two categories—the practical and the literary. Practical lists store meanings, while literary lists create them (89). Belknap’s recognition of the importance of meaning making is particularly relevant to a cultural interrogation of disability. As Mitchell and Snyder comment:Disability’s representational “fate” is not so much dependant upon a tradition of negative portrayals as it is tethered to inciting the act of meaning-making itself. (6)Disability unites disparate groups of people whose only commonality is that they are considered “abnormal” (Garland-Thompson). Ableism—the beliefs, processes, and practices which produce the ideal body—is a cultural project in which normative values are created in an attempt to neutralise the fact that all bodies are out of control (Kumari Campbell). Medical models use diagnostic lists and criteria to remove bodies from their social and cultural context and enforce an unequal power dynamic (Snyder and Mitchell 377).By comparison, the social model of disability shifts the emphasis to situate disability in social and cultural practices (Goggin and Newell 36). Lists have also been integral to the formation of the social model of disability as theorists established binary oppositions between medical and social understandings of disability (Oliver 22). While these lists have no “essential meaning,” through discourse they shape human experience (Liggett). Lists bring disparate items together to structure meaning and organisation. According to Hedlund, insights into the experience of disability—which is neither wholly medical nor wholly social—can be found in the language we use to communicate ideas about disability (766). For example, while the recent production of children’s dolls designed to reflect a list of the physical features of Down Syndrome (Table 2) may have no inherent meaning, negative public reception reveals recognisable modes of understanding disability. Down Syndrome dolls are in stark contrast to dolls popularly available which assume a normative representation. For Blair and Shalmon (15), popular children’s toys communicate cultural standards of beauty. Naomi Wolf describes beauty as a socially constructed normative value used to disempower women in particular. The idealisation of the human form is an aspect of children’s toys that has been criticised for perpetuating a narrow conception of beauty (Levy 189). Disability is likewise subject to social construction and is part of a collective social reality beyond diagnostic lists (Hedlund 766).Organising Knowledge: The Social vs. Medical Model of DisabilityDisability has long been moored in medical cultures and institutions which emphasise a sterile ideal of the body based on a diagnosis of biological difference as deviance. For example, in 1866, John Langdon Down sought to provide a diagnostic classification system for people with, what would later come to be called (after him), Down Syndrome. He focused on physical features:The hair is […] of a brownish colour, straight and scanty. The face is flat and broad, and destitute of prominence. The cheeks are roundish, and extended laterally. The eyes are obliquely placed, and the internal canthi more than normally distant from one another. The palpebral fissure is very narrow. The forehead is wrinkled transversely from the constant assistance which the levatores palpebrarum derive from the occipito-frontalis muscle in the opening of the eyes. The lips are large and thick with transverse fissures. The tongue is long, thick, and is much roughened. The nose is small. The skin has a slight dirty yellowish tinge, and is deficient in elasticity, giving the appearance of being too large for the body. (Down)These features form what Belknap would describe as a “pragmatic” list (12). For Belknap, scientific classification, such as the description Langdon Down offers above, introduces precision and validation to the use of lists (167). The overt principle linking these disparate characteristics together is the normative body from which these features deviate. Medicalised discourses, such as Down’s list, have been linked with the institutionalisation of people with this condition and their exclusion from the broader community (Hickey-Moody 23). Such emphasis on criteria to proffer diagnosis removes and decontextualises bodies from the world in which they live (Snyder and Mitchell 370). This world may in fact be the disabling factor, rather than the person’s body. The social model emerged in direct opposition to medicalised definitions of disability as a number of activists with disabilities in the United Kingdom formed The Union of Physically Impaired Against Segregation (UPIAS) and concluded that people with disability are disabled not by their bodies but by a world structured to exclude their bodies (Finkelstein 13). By separating disability (socially created) from impairment (the body), disability is understood as society’s unwillingness to accommodate the needs of people with impairments. The British academic and disability activist Michael Oliver was central to the establishment of the social model of disability. Following the activities of the UPIAS, Oliver (re)defined disability as a “form of social oppression,” and created two lists (reproduced below) to distinguish between the social and individual (or medical) models of disability. By utilising the list form in this way, Oliver both provided a repository of information regarding the social model of disability and contextualised it in direct opposition to what he describes as the individual model. These lists present the social model as a coherent discipline, in an easy to understand format. As Belknap argues, the suggestion of order is a major tool of the list (98). Oliver’s list suggests a clear order to the emerging social model of disability—disability is a problem with society, not an individual. However, this list was problematic because it appeared to disregard impairment within the experience of disability. As the “impersonal became political” (Snyder and Mitchell 377), impairment became the unacknowledged ambiguity in the binary opposition the social model was attempting to create (Shakespeare 35). Nevertheless, Oliver’s lists successfully enforced a desired order to the social model of disability. The individual modelThe social modelPersonal tragedy theorySocial oppression theoryPersonal problemSocial problemIndividual treatmentSocial actionMedicalisationSelf helpProfessional dominanceIndividual and collective responsibilityExpertiseExperienceAdjustmentAffirmationIndividual identityCollective identityPrejudiceDiscriminationAttitudesBehaviourCareRightsControlChoicePolicyPoliticsIndividual adaptation Social changeTable 1 The Individual v Social Model of Disability (Oliver)The social model then went through a period of “lists,” especially when discussing media and culture. Positive versus negative portrayals of disability were identified and scholars listed strategies for the appropriate representation of disability (Barnes, Barnes Mercer and Shakespeare). The representations of impairment or the physical markers of disability were discouraged as the discipline concerned itself with establishing disability as a political struggle against a disabling social world. Oliver’s lists arrange certain “facts” about disability. Disability is framed as a social phenomenon where certain aspects are emphasised and others left out. While Oliver explains that these lists were intended to represent extreme ends of a continuum to illustrate the distinction between disability and impairment (33), these are not mutually exclusive categories (Shakespeare 35). Disability is not simply a list of physical features, nor is it a clear distinction between individual/medical and social models. By utilising lists, the social model reacts to and attempts to move beyond the particular ordering provided by the medical model, but remains tied to a system of classification that imposes order on human functioning. Critical analysis of the representation of disability must re-engage the body by moving beyond binaries and pragmatic lists. While lists organise data central to human functioning, systems of meaning shape the organisation of human experience. Down Syndrome dolls, explored in the next section, complicate the distinction between the medical and social models.Down Syndrome DollsThese dolls are based on composites of a number of children with Down Syndrome (Hareyan). Helga Parks, CEO of HEST, describes the dolls as a realistic representation of nine physical features of Down Syndrome. Likewise, Donna Moore of Downi Creations employed a designer to oversee the production of the dolls which boast 13 features of Down Syndrome (Velasquez). These features are listed in the table below. HEST Down Syndrome Dolls Downi CreationsSmall ears set low on head with a fold at the topSmall ears with a fold at the topEars set low on the headSmall mouthSmall mouthProtruding tongueSlightly protruding tongueShortened fingers Shortened fingersPinkie finger curves inwardAlmond shaped eyesAlmond-shaped eyesHorizontal crease in palm of handHorizontal crease in palm of handGap between first and second toeA gap between the first and second toesShortened toesFlattened back of headFlattened back of headFlattened bridge across nose Flattened bridge across noseOptional: An incision in the chest to indicate open-heart surgery Table 2: Down Syndrome Dolls (Parks, Velasquez) Achieving the physical features of Down Syndrome is significant because Parks and Moore wanted children with the condition to recognise themselves:When a child with Down’s syndrome [sic.] picks up a regular doll, he doesn’t see himself, he sees the world’s perception of “perfect.” Our society is so focused on bodily perfection. (Cresswell)Despite these motivations, studies show that children with Down Syndrome prefer to play with “typical dolls” that do not reflect the physical characteristics of Down Syndrome (Cafferty 49). According to Cafferty, it is possible that children prefer typical dolls because they are “more attractive” (49). Similar studies of diverse groups of children have shown that children prefer to play with dolls they perceive as fitting into social concepts of beauty (Abbasi). Deeply embedded cultural notions of beauty—which exclude disability (see Morris)—are communicated from childhood (Blair & Shalmon 15). Notions of bodily perfection dominate children’s toys and Western culture in general as Cresswell comments above. Many bodies, not just those deemed “disabled,” do not conform to these cultural standards. Cultural ideals of beauty and an idealisation of the human body according to increasingly narrow parameters are becoming conflated with conceptions of normality (Wendell 86). Recognition of disability as subject to cultural rejection allows us to see “beauty and normalcy [as] a series of practices and positions [taken] in order to avoid the stigmatization of ugliness and abnormality” (Garland-Thompson). The exaggerated features of the doll problematise the idea that people with disability should strive to appear as nondisabled as possible and in turn highlights that some people, such as those with Down Syndrome, cannot “pass” as nondisabled and must therefore navigate a life and community that is not welcoming. While lists of the features of Down Syndrome store associated medicalised meanings, the discussion of the dolls online (the medium through which they are sold) provides insight into the cultural interpretation of disability and the way meaning is made. The next section of the paper considers a selection of negative responses to the Down Syndrome dolls that followed an article published in Mail Online (Fisher). What Causes Offence? Prior to Down Syndrome dolls, the majority of “disability dolls” were constructed through their accessories rather than through the dolls’ physical form and features. Wheelchairs, white canes, guide dogs and harnesses, plastic walkers, leg braces, and hearing aids could be purchased for use with dolls. Down Syndrome dolls look different as the features of impairment are embedded in the dolls’ construction. While accessories have a more temporary feel about them, the permanence of the impairments attributed to the doll was problematic for some who felt it projected a negative image of disability. Listed below are several negative comments following an article published in Mail Online (Fisher):What a grim world we are living in. No longer are dollies for play, for make believe, or for fun. Now it all about self image and psychological “help.” We “disabled” know we are “disabled”—we don’t need a doll to remind us of that! Stop making everything PC; let children be children and play and laugh once again!I think it’s sick and patronising.Who on earth are those education “experts?” Has nobody told them that you don’t educate children by mirroring their defects/weaknesses/negative traits but by doing exactly the opposite, mirroring back the BEST in them?The Downs Syndrome doll looks like they took the physical traits and presented them in an exaggerated way to make them more noticeable. That doll does not look attractive to me at all. If someone has a child that WANTS such a doll, fine. I can’t really see how it would help many of them, it would be like a huge sign saying “You are different.”The terminology used (grim, sick, patronising, defect, weak, negative, unattractive, different) to describe disability in these posts is significant. These descriptions are ideological categories which disadvantage and devalue “bodies that do not conform to certain cultural standards” (Garland-Thompson). Implicit and explicit in all of these comments is the sense that disability and Downs Syndrome in particular is undesirable, unattractive even. When listed together, like Belknap’s literary lists, they are not random or isolated interpretations; they form part of a larger system of meaning making around disability.These responses are informed by the notion that in order to gain equality in society, people with disability must suppress their difference and focus instead on how they are really just like everybody else. However, this focus ignores barriers to inclusion, such as in the rejection of bodies that do not ascribe to cultural standards of beauty. An increasing visibility of impairment in popular culture such as children’s toys advances an understanding of disability as diversity through difference and not something inherently bad. ConclusionPeter Laudin of Pattycake Doll, a company which sells Black, Hispanic, Asian, and Disabled dolls, has found that children “love all dolls unconditionally whether it’s special needs or not” (Lee Adam). He suggests that the majority of the negative responses to the Down Syndrome dolls stem from prejudice (Lee Adam). Dolls popularly available idealise the human form and assume a normative representation. While this has been criticised for communicating damaging standards of beauty from childhood (Levy, Blair and Shalmon), critiques about disability are not as widely understood. The social and medical models of disability focus attention on certain aspects of disability through lists; however, the reduction of diagnostic criteria in the form of a list (whether medical or social) decontextualises disability from the social and cultural world. Thus, the list form, while useful, has elided the disparate qualities of disability. As Belknap argues, lists “ask us to make them meaningful” (xv). Although the dolls discussed in this paper have been criticised for stereotyping and emphasising the difference between children with disability and those without, an inclusion of the physical features of Down Syndrome is consistent with recent moves within critical disability studies to re-engage the body (Shakespeare 35). As Faulkner notes in the epigraph to this paper, an examination of negative reactions to these dolls reveals much about the cultural position of people with disability. References Abbasi, Jennifer. “Why 6-Year Old Girls Want to be Sexy.” Live Science 16 July (2012). 30 Aug. 2012 ‹http://www.livescience.com/21609-self-sexualization-young-girls.html›. Barnes, Colin. Disabling Imagery and the Media: An Exploration of the Principles for Media Representations of Disabled People. Krumlin Halifax: Ryburn Publishing, 1992. 5 Aug. 2012 http://www.leeds.ac.uk/disability-studies/archiveuk/Barnes/disabling%20imagery.pdf.Barnes, Colin, Geoff Mercer, and Tom Shakespeare. Exploring Disability: A Sociological Introduction. Malden: Polity Press, 1999.Belknap, Robert. The List: The Uses and Pleasures of Cataloguing. New Haven: Yale U P, 2004.Blair, Lorrie, and Maya Shalmon. “Cosmetic Surgery and the Cultural Construction of Beauty.” Art Education 58.3 (2005): 14-18.Cafferty, Diana De Rosa. A Doll Like Me: Do Children with Down Syndrome Prefer to Play with Dolls That Have the Physical Features Associated with Down Syndrome? MS thesis. U of California, 2012. Campbell, Fiona Kumari. Contours of Ableism: The Production of Disability and Abledness. New York: Palgrave Macmillan, 2009.Collins, Allyson. “Dolls with Down Syndrome May Help Kids.” ABC News. 27 Jun. 2008. 4 Oct. 2012 ‹http://abcnews.go.com/Health/Parenting/story?id=5255393&page=1#.UGzQXK6T-XP›. Cresswell, Adam. “Dolls with Disability Divide Opinion.” The Australian 12 Jul. 2008. 26 Dec. 2008 ‹http://www.theaustralian.news.com.au/story/0,25197,24000338-23289,00.html›.Down, John Langdon. “Observations on an Ethnic Classification of Idiots.” Neonatology on the Web. 1866. 3 Aug. 2012 ‹http://www.neonatology.org/classics/down.html›.Faulkner, Joanne “Disability Dolls.” What Sorts of People? 26 Jun. 2008. 29 Aug. 2012 ‹http://whatsortsofpeople.wordpress.com/2008/06/26/disability-dolls/›.Finkelstein, Vic. “Representing Disability.” Disabling Barriers—Enabling Environments. Ed. John Swain, et al. Los Angeles: Sage, 2004. 13-20.Fisher, Lorraine. “Parents’ Fury at ‘Down's Syndrome Dolls’ Designed to Help Children Deal with Disability.” Mail Online 7 Jul. 2008. 26 Dec. 2008. ‹http://www.dailymail.co.uk/femail/article-1032600/Parents-fury-Downs-Syndrome-dolls-designed-help-children-deal-disability.html›. Garland-Thomson, Rosemarie. “Re-Shaping, Re-Thinking, Re-Defining: Feminist Disability Studies.” The Free Library 1 Jan. 2008. 3 Aug. 2012. ‹http://www.thefreelibrary.com/Re-shaping, Re-thinking, Re-defining: Feminist Disability Studies.-a084377500›.Goggin, Gerard and Christopher Newell. Disability in Australia: Exposing a Social Apartheid. Sydney: U of New South Wales, 2005.Hareyan, Armen. “Using Dolls to Reduce the Stigma of Down Syndrome.” EMax Health. 4 Dec. 2008. Jan 2009 ‹http://www.emaxhealth.com/7/22865.html›.Hedlund, Marianne. “Disability as a Phenomenon: A Discourse of Social and Biological Understanding.” Disability & Society. 15.5 (2000): 765-80.Hickey-Moody, Anna. Unimaginable Bodies. Netherlands: Sense Publishers, 2009.Lee Adams, William. “New Dolls on the Block.” Time Magazine 19 Mar. 2009. 13 Dec. 2009. ‹http://www.time.com/time/magazine/article/0,9171,1886457,00.html›.Levy, Ariel. Female Chauvinist Pigs: Women and the Rise of Raunch Culture. Collingwood: Black Inc. 2010.Liggett, Helen. “Stars are not Born: An Interpretive Approach to the Politics of Disability” in Disability Studies: Past Present and Future. Ed. Len Barton and Mike Oliver. Leeds: The Disability Press, 1997. 178-194.Mitchell, David and Sharon Snyder. Narrative Prosthesis: Disability and the Dependencies of Discourse. Ann Arbor, The U of Michigan P, 2000.Morris, Jenny “A Feminist Perspective.” Framed. Ed. Ann Pointon & Chris Davies. London: British Film Institute, 1997. 21-30. Oliver, Michael. Understanding Disability: From Theory to Practice. New York: Palgrave Macmillan, 1996.Parks, Helga. “New Doll Is Child’s Best Friend.” HEST Press Release, 2005. Shakespeare, Tom. Disability Rights and Wrongs. London: Routledge, 2006.Snyder, Sharon, and David Mitchell. “Re-Engaging the Body: Disability Studes and the Resistance to Embodiment.” Public Culture 13.3 (2001): 367-89.Velasquez, Leticia. “Downi Creations.” 2007. 4 Dec. 2009. ‹http://cause-of-our-joy.blogspot.com/2007/08/downi-creations.html›.Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability. New York: Routledge, 1996.Wolf, Naomi. The Beauty Myth: How Images of Beauty Are Used against Women. New York: Harper Perennial, 2002 [1991].

Abstract:

The rise of expertise in the lives of women is a complex and prolonged process that began when the old networks through which women had learned from each other were being discredited or destroyed (Ehrenreich and English). Enclosed spaces of expert power formed separately from political control, market logistics and the pressures exerted by their subjects (Rose and Miller). This, however, was not a question of imposing expertise on women and forcing them to adhere to expert proclamations: “the experts could not have triumphed had not so many women welcomed them, sought them out, and … organised to promote their influence” (Ehrenreich and English 28). Women’s continuing enthusiasm for self-help books – and it is mainly women who buy them (Wood) – attests to the fact that they are still welcoming expertise into their lives. This paper argues that a major factor in the popularity of self-help is the reversal of the conventional ‘priestly’ relationship and ethic of confession, in a process of conversion that relies on the enthusiasm and active participation of the reader.Miller and Rose outline four ways in which human behaviour can be transformed: regulation (enmeshing people in a code of standards); captivation (seducing people with charm or charisma); education (training, convincing or persuading people); and conversion (transforming personhood, and ways of experiencing the world so that people understand themselves in fundamentally new ways). Of these four ways of acting upon others, it is conversion that is the most potent, because it changes people at the level of their own subjectivity – “personhood itself is remade” (Miller and Rose 35). While theories of conversion cannot be adequately discussed here, one aspect held in common by theories of religious conversion as well as those from psychological studies of ‘brainwashing’ is enthusiasm. Rambo’s analysis of the stages of religious conversion, for example, includes ‘questing’ in an active and engaged way, and a probable encounter with a passionately enthusiastic believer. Melia and Ryder, in their study of ‘brainwashing,’ state that two of the end stages of conversion are euphoria and proselytising – a point to which I will return in the conclusion. In order for a conversion to occur, then, the reader must be not only intellectually convinced of the truth, but must feel it is an important or vital truth, a truth she needs – in short, the reader must be enthused. The popularity of self-help books coincides with the rise of psy expertise more generally (Rose, "Identity"; Inventing), but self-help putatively offers escape from the experts, whilst simultaneously immersing its readers in expertise. Readers of self-help view themselves as reading sceptically (Simonds), interpretively (Rosenblatt) and resistingly (Fetterly, Rowe). They choose to read books as an educational activity (Dolby), rather than attending counselling or psychotherapy sessions in which they might be subject to manipulation, domination and control by a therapist (Simonds). I have discussed the nature of the advice in relationship manuals elsewhere (Hazleden, "Relationship"; "Pathology"), but the intention of this paper is to investigate the ways in which the authors attempt to enthuse and convert the reader.Best-Selling ExpertiseIn common with other best-selling genres, popular relationship manuals begin trying to enthuse the reader on the covers, which are intended to attract the reader, to establish the professional – or ‘priestly’ – credentials of the author and to assert the merit of the book, presenting the authors as experienced professionally-qualified experts, and advertising their bestseller status. These factors form part of the marketing ‘buzz’ or collective enthusiasm about a particular author or book.As part of the process of establishing themselves in the priestly role, the authors emphasise their professional qualifications and experience. Most authors use the title ‘Dr’ on the cover (Hendrix, McGraw, Forward, Gray, Cowan and Kinder, Schlessinger) or ‘PhD’ after their names (Vedral, DeAngelis, Spezzano). Further claims on the covers include assertions of the prominence of the authors in their field. Typical are DeAngelis’s claim to being “America’s foremost relationships expert,” and Hendrix’s claim to being “the world’s leading marital therapist.” Clinical and professional experience is mentioned, such as Spezzano’s “twenty-three years of counseling experience” (1) and Forward’s experience as “a consultant in many southern California Medical and psychiatric facilities” (iii). The cover of Spezzano’s book claims that he is a “therapist, seminar leader, author, lecturer and visionary leader.” McGraw emphasises his formal qualifications throughout his book, saying, “I had more degrees than a thermometer” (McGraw 6), and he refers to himself throughout as “Dr. Phil,” much like “Dr Laura” (Schlessinger). Facts and SecretsThe authors claim their ideas are based on clinical practice, research, and evidence. One author claims, “In this book, there is a wealth of tried and accurate information, which has worked for thousands of people in my therapeutic practice and seminars over the last two decades” (Spezzano 1). Another claims that he “worked with hundreds of couples in private practice and thousands more in workshops and seminars” and subsequently based his ideas on “research and clinical observations” (Hendrix xviii). Dowling refers to “four years of research … interviewing professionals who work with and study women.” She went to all this trouble because, she assures us, “I wanted facts” (Dowling, dust-jacket, 30).All this is in order to assure the reader of the relevance and build her enthusiasm about the importance of the book. McGraw (226) says he “reviewed case histories of literally thousands and thousands of couples” in order “to choose the right topics” for his book. Spezzano (7) claims that his psychological exercises come from clinical experience, but “more importantly, I have tested them all personally. Now I offer them to you.” This notion of being in possession of important new knowledge of which the reader is unaware is common, and expressed most succinctly by McGraw (15): “I have learned what you know and, more important, what you don't know.” This knowledge may be referred to as ‘secret’ (e.g. DeAngelis), or ‘hidden’ (e.g. Dowling) or as a recent discovery. Readers seem to accept this – they often assume that self-help books spring ‘naturally’ from clinical investigation as new information is ‘discovered’ about the human psyche (Lichterman 432).The Altruistic AuthorOn the assumption that readers will be familiar with other self-help books, some authors find it necessary to explain why they felt motivated to write one themselves. Usually these take the form of a kind of altruistic enthusiasm to share their great discoveries. Cowan and Kinder (xiv) claim that “one of the wonderful, intrinsic rewards of working with someone in individual psychotherapy is the rich and intense relationship that is established, [but] one of the frustrations of individual work is that in a whole lifetime it is impossible to touch more than a few people.” Morgan (26) assures us that “the results of applying certain principles to my marriage were so revolutionary that I had to pass them on in the four lesson Total Woman course, and now in this book.”The authors justify their own addition to an overcrowded genre by delineating what is distinctive about their own book, or what other “books, articles and surveys missed” (Dowling 30) or misinterpreted. Beattie (98-102) devotes several pages to a discussion of Dowling to assert that Dowling’s ‘Cinderella Complex’ is more accurately known as ‘codependency.’ The authors of another book admit that their ideas are not new, but claim to make a unique contribution because they are “writing from a much-needed male point of view” (Cowan and Kinder, back cover). Similarly, Gray suggests “many books are one-sided and unfortunately reinforce mistrust and resentment toward the opposite sex.” This meant that “a definitive guide was needed for understanding how healthy men and women are different,” and he promises “This book provides that vision” (Gray 4,7).Some authors are vehement in attacking other experts’ books as “gripe sessions,” “gobbledegook” (Schlessinger 51, 87), or “ridiculous” (Vedral 282). McGraw (9) writes “it is amazing to me how this country is overflowing with marital therapists, psychiatrists and psychologists, counselors, healers, advice columnists, and self-help authors – and their approach to relationships is usually so embarrassing that I want to turn my head in shame.” His own book, by contrast, will be quite different from anything the reader has heard before, because “it differs from what relationship ‘experts’ tell you” (McGraw 45).Confessions of an Author Because the authors are writing about intimate relationships, they are also keen to establish their credentials on a more personal level. “Loving, losing, learning the lessons, and reloving have been my path” (Carter-Scott 247-248), says one, and another asserts that, “It’s taken me a long time to understand men. It’s been a difficult and often painful journey and I’ve made a lot of mistakes along the way in my own relationships” (DeAngelis xvi). The authors are even keen to admit the mistakes they made in their previous relationships. Gray says, “In my previous relationships, I had become indifferent and unloving at difficult times … As a result, my first marriage had been very painful and difficult” (Gray 2). Others describe the feelings of disappointment with their marriages: We gradually changed. I was amazed to realize that Charlie had stopped talking. He had become distant and preoccupied. … Each evening, when Charlie walked in the front door after work, a cloud of gloom and tension floated in with him. That cloud was almost tangible. … this tension cloud permeated our home atmosphere … there was a barrier between us. (Morgan 18)Doyle (14) tells a similar tale: “While my intentions were good, I was clearly on the road to marital hell. … I was becoming estranged from the man who had once made me so happy. Our marriage was in serious trouble and it had only been four years since we’d taken our vows.” The authors relate the bewilderment they felt in these failing relationships: “My confusion about the psychology of love relationships was compounded when I began to have problems with my own marriage. … we gave our marriage eight years of intensive examination, working with numerous therapists. Nothing seemed to help” (Hendrix xvii).Even the process of writing the relationship manual itself can be uncomfortable: This was the hardest and most painful chapter for me to write, because it hit so close to home … I sat down at my computer, typed out the title of this chapter, and burst into tears. … It was the pain of my own broken heart. (DeAngelis 74)The Worthlessness of ExpertiseThus, the authors present their confessional tales in which they have learned important lessons through their own suffering, through the experience of life itself, and not through the intervention of any form of external or professional expertise. Furthermore, they highlight the failure of their professional training. Susan Forward (4) draws a comparison between her professional life as a relationship counsellor and the “Susan who went home at night and twisted herself into a pretzel trying to keep her husband from yelling at her.” McGraw tells of a time when he was counselling a couple, and: Suddenly all I could hear myself saying was blah, blah, blah. Blah, blah, blah, blah. As I sat there, I asked myself, ‘Has anybody noticed over the last fifty years that this crap doesn’t work? Has it occurred to anyone that the vast majority of these couples aren’t getting any better? (McGraw 6)The authors go to some lengths to demonstrate that their new-found knowledge is unlike anything else, and are even prepared to mention the apparent contradiction between the role the author already held as a relationship expert (before they made their important discoveries) and the failure of their own relationships (the implication being that these relationships failed because the authors themselves were not yet beneficiaries of the wisdom contained in their latest books). Gray, for example, talking about his “painful and difficult” first marriage (2), and DeAngelis, bemoaning her “mistakes” (xvi), allude to the failure of their marriage to each other, at a time when both were already well-known relationship experts. Hendrix (xvii) says: As I sat in the divorce court waiting to see the judge, I felt like a double failure, a failure as a husband and as a therapist. That very afternoon I was scheduled to teach a course on marriage and the family, and the next day, as usual, I had several couples to counsel. Despite my professional training, I felt just as confused and defeated as the other men and women who were sitting beside me.Thus the authors present the knowledge they have gained from their experiences as being unavailable through professional marital therapy, relationship counselling, and other self-help books. Rather, the advice they impart is presented as the hard-won outcome of a long and painful process of personal discovery.Peace and PassionOnce the uniqueness of the advice is established, the authors attempt to enthuse the reader by describing the effects of following it. Norwood (Women 4) says her programme led to “the most rewarding years of my life,” and Forward (10) says she “discovered enormous amounts of creativity and energy in myself that hadn't been available to me before.” Gray (268) asserts that, following his discoveries “I personally experienced this inner transformation,” and DeAngelis (126) claims “I am compassionate where I used to be critical; I am patient where I used to be judgmental.” Doyle (23) says, “practicing the principles described in this book has transformed my marriage into a passionate, romantic union.” Similarly, in discussing the effects of her ideas on her marriage, Morgan (26) speaks of “This brand new love between us” that “has given us a brand new life together.” Having established the success of their ideas and techniques on their own lives, the authors go on to relate stories about their successful application to the lives and relationships of their clients. One author writes that “When I began implementing my ideas … The divorce rate in my practice sharply declined, and the couples … reported a much deeper satisfaction in their marriages” (Hendrix xix). Another claims “Repeatedly I have heard people say that they have benefited more from this new understanding of relationships than from years of therapy” (Gray 7). Morgan, describing the effects of her ‘Total Woman’ classes, says: Attending one of the first classes in Miami were wives of the Miami Dolphin football players … it is interesting to note that their team won every game that next season and became the world champions! … Gals, I wouldn’t dream of taking credit for the Superbowl … (Morgan 188)In case we are still unconvinced, the authors include praise and thanks from their inspired clients: “My life has become exciting and wonderful. Thank you,” writes one (Vedral 308). Gray (6) talks of the “thousands of inspirational comments that people have shared” about his advice. Vedral (307) says “I have received thousands of letters from women … thanking me for shining a beam of light on their situations.” If these clients have transformed their lives, the authors claim, so can the reader. They promise that the future will be “exceptional” (Friedman 242) and “wonderful” (Norwood, Women 257). It will consist of “self fulfilment, love, and joy” (Norwood, Women 26), “peace and joy” (Hendrix xx), “freedom and a lifetime of healing, hope and happiness” (Beattie), “peace, relief, joy, and passion that you will never find any other way” (Doyle 62) – in short, “happiness for the rest of your life” (Spezzano 77).SummaryIn order to effect the conversion of their readers, the authors seek to create enthusiasm about their books. First, they appeal to the modern tradition of credentialism, making claims about their formal professional qualifications and experience. This establishes them as credible ‘priests.’ Then they make calculable, factual, evidence-based claims concerning the number of books they have sold, and appeal to the epistemological authority of the methodology involved in establishing the findings of their books. They provide evidence of the efficacy of their own unique methods by relating the success of their ideas when applied to their own lives and relationships, and those of their clients and their readers. The authors also go to some lengths to establish that they have personal experience of relationship problems, especially those the reader is currently presumed to be experiencing. This establishes the ‘empathy’ essential to Rogerian therapy (Rogers), and an informal claim to lay knowledge or insight. In telling their own personal stories, the authors establish an ethic of confession, in which the truth of oneself is sought, unearthed and revealed in “the infinite task of extracting from the depths of oneself, in between the words, a truth which the very form of the confession holds out like a shimmering mirage” (Foucault, History 59). At the same time, by claiming that their qualifications were not helpful in solving these personal difficulties, the authors assert that much of their professional training was useless or even harmful, suggesting that they are aware of a general scepticism towards experts (cf. Beck, Giddens), and share these doubts. By implying that it is other experts who are perhaps not to be trusted, they distinguish their own work from anything offered by other relationship experts, thereby circumventing “the paradox of self-help books’ existence” (Cheery) and proliferation. Thus, the authors present their motives as altruistic, whilst perhaps questioning the motives of others. Their own book, they promise, will be the one (finally) that brings a future of peace, passion and joy. Conversion, Enthusiasm and the Reversal of the Priestly RelationshipAlthough power relations between authors and readers are complex, self-help is evidence of power in one of its most efficacious forms – that of conversion. This is a relationship into which one enters voluntarily and enthusiastically, in the name of oneself, for the benefit of oneself. Such power enthuses, persuades, incites, invites, provokes and entices, and it is therefore a strongly subjectifying power, and most especially so because the relationship of the reader to the author is one of choice. Because the reader can choose between authors, and skip or skim sections, she can concentrate on the parts of the therapeutic diagnosis that she believes specifically apply to her. For example, Grodin (414) found it was common for a reader to attach excerpts from a book to a bathroom mirror or kitchen cabinet, and to re-read and underline sections of a book that seemed most relevant. In this way, through her enthusiastic participation, the reader becomes her own expert, her own therapist, in control of certain aspects of the encounter, which nonetheless must always take place on psy terms.In many conversion studies, the final stage involves the assimilation and embodiment of new practices (e.g. Paloutzian et al. 1072), whereby the convert employs or utilises her new truths. I argue that in self-help books, this stage occurs in the reversal of the ‘priestly’ relationship. The ‘priestly’ relationship between client and therapist, is one in which in which the therapist remains mysterious while the client confesses and is known (Rose, "Power"). In the self-help book, however, this relationship is reversed. The authors confess their own ‘sins’ and imperfections, by relating their own disastrous experiences in relationships and wrong-thinking. They are, of course, themselves enthusiastic converts, who are enmeshed within the power that they exercise (cf. Foucault History; Discipline), as these confessions illustrate. The reader is encouraged to go through this process of confession as well, but she is expected to do so privately, and to play the role of priest and confessor to herself. Thus, in a reversal of the priestly relationship, the person who ‘is knowledge’ within the book itself is the author. It is only if the reader takes up the invitation to perform for herself the priestly role that she will become an object of knowledge – and even then, only to herself, albeit through a psy diagnostic gaze provided for her. Of course, this instance of confession to the self still places the individual “in a network of relations of power with those who claim to be able to extract the truth of these confessions through their possession of the keys to interpretation” (Dreyfus and Rabinow 174), but the keys to interpretation are provided to the reader by the author, and left with her for her own safekeeping and future use. As mentioned in the introduction, conversion involves questing in an active and engaged way, and may involve joy and proselytising. Because the relationship must be one of active participation, the enthusiasm of the reader to apply these truths to her own self-understanding is critical. Indeed, the convert is, by her very nature, an enthusiast.ConclusionSelf-help books seek to bring about a transformation of subjectivity from powerlessness to active goal-setting, personal improvement and achievement. This is achieved by a process of conversion that produces particular choices and types of identity, new subjectivities remade through the production of new ethical truths. Self-help discourses endow individuals with new enthusiasms, aptitudes and qualities – and these can then be passed on to others. Indeed, the self-help reader is invited, by means of the author’s confessions, to become, in a limited way, the author’s own therapist – ie, she is invited to perform an examination of the author’s (past) mistakes, to diagnose the author’s (past) condition and to prescribe an appropriate (retrospective) cure for this condition. Through the process of diagnosing the author and the author’s clients, using the psy gaze provided by the author, the reader is rendered an expert in therapeutic wisdom and is converted to a new belief system in which she will become an enthusiastic participant in her own subjectification. ReferencesBeattie, M. 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Abstract:

Introduction The counterculture that arose during the 1960s and 1970s left lasting social and political reverberations in developed nations. This was a time of increasing affluence and liberalisation which opened up remarkable political opportunities for social change. Within this context, an array of new social movements were a vital ingredient of the ferment that saw existing norms challenged and the establishment of new rights for many oppressed groups. An expanding arena of concerns included the environmental damage caused by 200 years of industrial capitalism. This article examines one aspect of a current environment movement in Australia, the anti-Coal Seam Gas (CSG) movement, and the part played by participants. In particular, the focus is upon one action that emerged during the recent Bentley Blockade, which was a regional mobilisation against proposed unconventional gas mining (UGM) near Lismore, NSW. Over the course of the blockade, the conventional ritual of waving at passers-by was transformed into a mechanism for garnering broad community support. Arguably, this was a crucial factor in the eventual outcome. In this case, we contend that the wave, rather than a countercultural artefact being appropriated by the mainstream, represents an everyday behaviour that builds social solidarity, which is subverted to become an effective part of the repertoire of the movement. At a more general level, this article examines how counterculture and mainstream interact via the subversion of “ordinary” citizens and the role of certain cultural understandings for that purpose. We will begin by examining the nature of the counterculture and its relationship to social movements before discussing the character of the anti-CSG movement in general and the Bentley Blockade in particular, using the personal experience of one of the writers. We will then be able to explore our thesis in detail and make some concluding remarks. The Counterculture and Social Movements In this article, we follow Cox’s understanding of the counterculture as a kind of meta-movement within which specific social movements are situated. For Cox (105), the counterculture that flourished during the 1960s and 1970s was an overarching movement in which existing social relations—in particular the family—were rejected by a younger generation, who succeeded in effectively fusing previously separate political and cultural spheres of dissent into one. Cox (103-04) points out that the precondition for such a phenomenon is “free space”—conditions under which counter-hegemonic activity can occur—for example, being liberated from the constraints of working to subsist, something which the unprecedented prosperity of the post WWII years allowed. Hence, in the 1960s and 1970s, as the counterculture emerged, a wave of activism arose in the western world which later came to be referred to as new social movements. These included the civil rights movement, women’s liberation, pacifism and the anti-nuclear and environment movements. The new movements rejected established power and organisational structures and tended, some scholars argued, to cross class lines, basing their claims on non-material issues. Della Porta and Diani claim this wave of movements is characterised by: a critical ideology in relation to modernism and progress; decentralized and participatory organizational structures; defense of interpersonal solidarity against the great bureaucracies; and the reclamation of autonomous spaces, rather than material advantages. (9) This depiction clearly announces the countercultural nature of the new social movements. As Carter (91) avers, these movements attempted to bypass the state and instead mobilise civil society, employing a range of innovative tactics and strategies—the repertoire of action—which may involve breaking laws. It should be noted that over time, some of these movements did shift towards accommodation of existing power structures and became more reformist in nature, to the point of forming political parties in the case of the Greens. However, inasmuch as the counterculture represented a merging of distinctively non-mainstream ways of life with the practice of actively challenging social arrangements at a political level (Cox 18–19; Grossberg 15–18;), the tactic of mobilising civil society to join social movements demonstrates in fact a reverse direction: large numbers of people are transfigured in radical ways by their involvement in social movements. One important principle underlying much of the repertoire of action of these new movements was non-violence. Again, this signals countercultural norms of the period. As Sharp (583–86) wrote at the time, non-violence is crucial in that it denies the aggressor their rationale for violent repression. This principle is founded on the liberal notion, whose legacy goes back to Locke, that the legitimacy of the government rests upon the consent of the governed—that is, the people can withdraw their consent (Locke in Ball & Dagger 92). Ghandi also relied upon this idea when formulating his non-violent approach to conflict, satyagraha (Sharp 83–84). Thus an idea that upholds the modern state is adopted by the counterculture in order to undermine it (the state), again demonstrating an instance of counterflow from the mainstream. Non-violence does not mean non-resistance. In fact, it usually involves non-compliance with a government or other authority and when practised in large numbers, can be very effective, as Ghandi and those in the civil rights movement showed. The result will be either that the government enters into negotiation with the protestors, or they can engage in violence to suppress them, which generally alienates the wider population, leading to a loss of support (Finley & Soifer 104–105). Tarrow (88) makes the important point that the less threatening an action, the harder it is to repress. As a result, democratic states have generally modified their response towards the “strategic weapon of nonviolent protest and even moved towards accommodation and recognition of this tactic as legitimate” (Tarrow 172). Nevertheless, the potential for state violence remains, and the freedom to protest is proscribed by various laws. One of the key figures to emerge from the new social movements that formed an integral part of the counterculture was Bill Moyer, who, in conjunction with colleagues produced a seminal text for theorising and organising social movements (Moyer et al.). Many contemporary social movements have been significantly influenced by Moyer’s Movement Action Plan (MAP), which describes not only key theoretical concepts but is also a practical guide to movement building and achieving aims. Moyer’s model was utilised in training the Northern Rivers community in the anti-CSG movement in conjunction with the non-violent direct action (NVDA) model developed by the North-East Forest Alliance (NEFA) that resisted logging in the forests of north-eastern NSW during the late 1980s and 1990s (Ricketts 138–40). Indeed, the Northern Rivers region of NSW—dubbed the Rainbow Region—is celebrated, as a “‘meeting place’ of countercultures and for the articulation of social and environmental ideals that challenge mainstream practice” (Ward and van Vuuren 63). As Bible (6–7) outlines, the Northern Rivers’ place in countercultural history is cemented by the holding of the Aquarius Festival in Nimbin in 1973 and the consequent decision of many attendees to stay on and settle in the region. They formed new kinds of communities based on an alternative ethics that eschewed a consumerist, individualist agenda in favour of modes of existence that emphasised living in harmony with the environment. The Terania Creek campaign of the late 1970s made the region famous for its environmental activism, when the new settlers resisted the logging of Nightcap National Park using nonviolent methods (Bible 5). It was also instrumental in developing an array of ingenious actions that were used in subsequent campaigns such as the Franklin Dam blockade in Tasmania in the early 1980s (Kelly 116). Indeed, many of these earlier activists were key figures in the anti-CSG movement that has developed in the Rainbow Region over the last few years. The Anti-CSG Movement Despite opposition to other forms of UGM, such as tight sands and shale oil extraction techniques, the term anti-CSG is used here, as it still seems to attract wide recognition. Unconventional gas extraction usually involves a process called fracking, which is the injection at high pressure of water, sand and a number of highly toxic chemicals underground to release the gas that is trapped in rock formations. Among the risks attributed to fracking are contamination of aquifers, air pollution from fugitive emissions and exposure to radioactive particles with resultant threats to human and animal health, as well as an increased risk of earthquakes (Ellsworth; Hand 13; Sovacool 254–260). Additionally, the vast amount of water that is extracted in the fracking process is saline and may contain residues of the fracking chemicals, heavy metals and radioactive matter. This produced water must either be stored or treated (Howarth 273–73; Sovacool 255). Further, there is potential for accidents and incidents and there are many reports—particularly in the United States where the practice is well established—of adverse events such as compressors exploding, leaks and spills, and water from taps catching fire (Sovacool 255–257). Despite an abundance of anecdotal evidence, until recently authorities and academics believed there was not enough “rigorous evidence” to make a definitive judgment of harm to animal and human health as a result of fracking (Mitka 2135). For example, in Australia, the Queensland Government was unable to find a clear link between fracking and health complaints in the Tara gasfield (Thompson 56), even though it is known that there are fugitive emissions from these gasfields (Tait et al. 3099-103). It is within this context that grassroots opposition to UGM began in Australia. The largest and most sustained challenge has come from the Northern Rivers of New South Wales, where a company called Metgasco has been attempting to engage in UGM for a number of years. Stiff community opposition has developed over this time, with activists training, co-ordinating and organising using the principles of Moyer’s MAP and NEFA’s NVDA. Numerous community and affinity groups opposing UGM sprang up including the Lock the Gate Alliance (LTG), a grassroots organisation opposing coal and gas mining, which formed in 2010 (Lock the Gate Alliance online). The movement put up sustained resistance to Metgasco’s attempts to establish wells at Glenugie, near Grafton and Doubtful Creek, near Kyogle in 2012 and 2013, despite the use of a substantial police presence at both locations. In the event, neither site was used for production despite exploratory wells being sunk (ABC News; Dobney). Metgasco announced it would be withdrawing its operations following new Federal and State government regulations at the time of the Doubtful Creek blockade. However it returned to the fray with a formal announcement in February 2014 (Metgasco), that it would drill at Bentley, 12 kilometres west of Lismore. It was widely believed this would occur with a view to production on an industrial scale should initial exploration prove fruitful. The Bentley Blockade It was known well before the formal announcement that Metgasco planned to drill at Bentley and community actions such as flash mobs, media releases and planning meetings were part of the build-up to direct action at the site. One of the authors of this article was actively involved in the movement and participated in a variety of these actions. By the end of January 2014 it was decided to hold an ongoing vigil at the site, which was still entirely undeveloped. Participants, including one author, volunteered for four-hour shifts which began at 5 a.m. each day and before long, were lasting into the night. The purpose of a vigil is to bear witness, maintain a presence and express a point of view. It thus accords well with the principle of non-violence. Eventually the site mushroomed into a tent village with three gates being blockaded. The main gate, Gate A, sprouted a variety of poles, tripods and other installations together with colourful tents and shelters, peopled by protesters on a 24-hour basis. The vigils persisted on all three gates for the duration of the blockade. As the number of blockaders swelled, popular support grew, lending weight to the notion that countercultural ideas and practices were spreading throughout the community. In response, Metgasco called on the State Government to provide police to coincide with the arrival of equipment. It was rumoured that 200 police would be drafted to defend the site in late April. When alerts were sent out to the community warning of imminent police action, an estimated crowd of 2000 people attended in the early hours of the morning and the police called off their operation (Feliu). As the weeks wore on, training was stepped up, attendees were educated in non-violent resistance and protestors willing to act as police liaison persons were placed on a rotating roster. In May, the State Government was preparing to send up to 800 police and the Riot Squad to break the blockade (NSW Hansard in Buckingham). Local farmers (now a part of the movement) and activist leaders had gone to Sydney in an effort to find a political solution in order to avoid what threatened to be a clash that would involve police violence. A confluence of events, such as: the sudden resignation of the Premier; revelations via the Independent Commission against Corruption about nefarious dealings and undue influence of the coal industry upon the government; a radio interview with locals by a popular broadcaster in Sydney; and the reputed hesitation of the police themselves in engaging with a group of possibly 7,000 to 10,000 protestors, resulted in the Office for Coal Seam Gas suspending Metgasco’s drilling licence on 15 May (NSW Department of Resources & Energy). The grounds were that the company had not adequately fulfilled its obligations to consult with the community. At the date of writing, the suspension still holds. The Wave The repertoire of contention at the Bentley Blockade was expansive, comprising most of the standard actions and strategies developed in earlier environmental struggles. These included direct blocking tactics in addition to the use of more carnivalesque actions like music and theatre, as well as the use of various media to reach a broader public. Non-violence was at the core of all actions, but we would tentatively suggest that Bentley may have provided a novel addition to the repertoire, stemming originally from the vigil, which brought the first protestors to the site. At the beginning of the vigil, which was initially held near the entrance to the proposed drilling site atop a cutting, occupants of passing vehicles below would demonstrate their support by sounding their horns and/or waving to the vigil-keepers, who at first were few in number. There was a precedent for this behaviour in the campaign leading up to the blockade. Activist groups such as the Knitting Nannas against Gas had encouraged vehicles to show support by sounding their horns. So when the motorists tooted spontaneously at Bentley, we waved back. Occupants of other vehicles would show disapproval by means of rude gestures and/or yelling and we would wave to them as well. After some weeks, as a presence began to be established at the site, it became routine for vigil keepers to smile and wave at all passing vehicles. This often elicited a positive response. After the first mass call-out discussed above, a number of us migrated to another gate, where numbers were much sparser and there was a perceived need for a greater presence. At this point, the participating writer had begun to act as a police liaison person, but the practice of waving routinely was continued. Those protecting this gate usually included protestors ready to block access, the police liaison person, a legal observer, vigil-keepers and a passing parade of visitors. Because this location was directly on the road, it was possible to see the drivers of vehicles and make eye contact more easily. Certain vehicles became familiar, passing at regular times, on the way to work or school, for example. As time passed, most of those protecting the gate also joined the waving ritual to the point where it became like a game to try to prise a signal of acknowledgement from the passing motorists, or even to win over a disapprover. Police vehicles, some of which passed at set intervals, were included in this game. Mostly they waved cheerfully. There were some we never managed to win over, but waving and making direct eye contact with regular motorists over time created a sense of community and an acknowledgement of the work we were doing, as they increasingly responded in kind. Motorists could hardly feel threatened when they encountered smiling, waving protestors. By including the disapprovers, we acted inclusively and our determined good humour seemed to de-escalate demonstrated hostility. Locals who did not want drilling to go ahead but who were nevertheless unwilling to join a direct action were thus able to participate in the resistance in a way that may have felt safe for them. Some of them even stopped and visited the site, voicing their support. Standing on the side of the road and waving to passers-by may seem peripheral to the “real” action, even trivial. But we would argue it is a valuable adjunct to a blockade (which is situated near a road) when one of the strategies of the overall campaign is to win popular backing. Hence waving, whilst not a completely new part of the repertoire, constitutes what Tilly (41–45) would call innovation at the margins, something he asserts is necessary to maintain the effectiveness and vitality of contentious action. In this case, it is arguable that the sheer size of community support probably helped to concentrate the minds of the state government politicians in Sydney, particularly as they contemplated initiating a massive, taxpayer-funded police action against the people for the benefit of a commercial operation. Waving is a symbolic gesture indicating acknowledgement and goodwill. It fits well within a repertoire based on the principle of non-violence. Moreover, it is a conventional social norm and everyday behaviour that is so innocuous that it is difficult to see how it could be suppressed by police or other authorities. Therein lies its subversiveness. For in communicating our common humanity in a spirit of friendliness, we drew attention to the fact that we were without rancour and tacitly invited others to join us and to explore our concerns. In this way, the counterculture drew upon a mainstream custom to develop and extend upon a new form of dissent. This constitutes a reversal of the more usual phenomenon of countercultural artefacts—such as “hippie clothing”—being appropriated or co-opted by the prevailing culture (see Reading). But it also fits with the more general phenomenon that we have argued was occurring; that of enticing ordinary residents into joining together in countercultural activity, via the pathway of a social movement. Conclusion The anti-CSG movement in the Northern Rivers was developed and organised by countercultural participants of previous contentious challenges. It was highly effective in building popular support whilst at the same time forging a loose coalition of various activist groups. We have surveyed one practice—the wave—that evolved out of mainstream culture over the course of the Bentley Blockade and suggested it may come to be seen as part of the repertoire of actions that can be beneficially employed under suitable conditions. Waving to passers-by invites them to become part of the movement in a non-threatening and inclusive way. It thus envelops supporters and non-supporters alike, and its very innocuousness makes it difficult to suppress. We have argued that this instance can be referenced to a similar reverse movement at a broader level—that of co-opting liberal notions and involving the general populace in new practices and activities that undermine the status quo. The ability of the counterculture in general and environment movements in particular to innovate in the quest to challenge and change what it perceives as damaging or unethical practices demonstrates its ingenuity and spirit. This movement is testament to its dynamic nature. References ABC News. Metgasco Has No CSG Extraction Plans for Glenugie. 2013. 30 July 2014 ‹http://www.abc.net.au/news/2013-01-22/metgasco-says-no-csg-extraction-planned-for-glenugie/4477652›. Bible, Vanessa. 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