Zeitschriftenartikel zum Thema „Society for Relief of the Destitute Sick“

Basil of Caesarea, Gregory of Nazianzus, and Gregory of Nyssa each include detailed depictions of the poor in their sermons on poverty relief. This paper examines their rhetorical constructs in order to look for the everyday life of these destitute, who often elude the archaeological record. Sharing some features with the later Byzantine exempla, these images had rhetorical power precisely because they were recognisably comparable with ‘real’ poor known to their audiences. Here four stereotypes are considered: the parent who must sell a child; the exiled sick; the famine victim (with an emphasis on impoverished women and questions of status); and the debtor. The paper concludes that these authors’ constructed images of the poor body must be understood in the context of their theological understanding of the Christian doctrine of the Incarnation.

To mark the 125th anniversary of the International Red Cross and Red Crescent Movement, the Henry Dunant Society organized a two-day symposium in Geneva from 26 to 28 October 1988 on the direct precursors of the Red Cross.For three days, historians and people working on the theoretical and practical side of the Red Cross and other academic and private institutions sought to discover or rediscover women and men who, especially in the nineteenth century, had the same concerns as the “Committee of Five” for wounded and sick soldiers and for prisoners of war and a desire to see both the wounded and those caring for them declared neutral and standing relief societies created. In short, the purpose of the symposium was to ascertain the influence of that humanitarian sensibility which found tangible expression with the founding of the Red Cross in 1863.

Eugene Ionesco once remarked that an excess of politics and an exaggeration of sports are characteristics of our contemporary civilization. The excess of politization affects all parts of our public life, including medicine and its specialty Disaster Medicine. Political ideologies try to usurp a field that has solely humanitarian objectives, that depends on providing for and applying relief to many people in acute distress. There are already many relief organizations and ambulance services, physician staffed emergency medical services systems and first aid trained laymen. There are state and federal disaster relief authorities. Why then was it necessary to add another organization to this sometimes confusing manifold, the German Society on Disaster Medicine?Emergency medicine is for the individual. It must provide optimal care for each single injured or sick person — except for the shortterm management of multiple casualties. Emergency medical missions are limited by time and locality. These missions are hospital services extended to the scene of the accident and work in connection with hospitals. Disaster medicine is for the masses. Its task is to do the best possible for the largest number of people at the right time and at the right place. This implies that in a disaster situation, optimal care for every single individual can and should not be the goal, but rather the best possible care for the largest number. Disaster medicine has to work in large areas, supraregional and long-term. It needs numerous treatment facilities and several steps or levels of treatment. Therefore it requires a firm medical coordination of lay help, primary professional help, transportation, and specialized hospital treatment with maximal efficiency.

Abstract: Nursing has come a very, very long way in the past century. However, some of the challenges highlighted by nurse leaders in the late 1800’s to early 1900’s, still face the profession a century later even though their exact nature might be somewhat different. Throughout the history of nursing, most of the challenges can be linked to the gender and class barriers faced by women in society and the ever-present economic demands of the healthcare industry.The Staff Nurse is the first level professional Nurse in the hospital set up. Therefore by appearance and by word she will be professional at all time. Taking a walk through the history of nursing, the shortage of nurses appears to have been a problem from the time when the value of trained nurses in hospitals and the community was recognized. From the mid-1800’s, when scientific developments in Western medicine increasingly led to successful treatment, hospitals changed from places where the sick and destitute were cared for to institutions where the ill were admitted for treatment. The time was ripe when Florence Nightingale introduced formal training of nurses, and since then, it appears that the demand for qualified nurses increased exponentially. The objective of obtaining state registration for nurses was the priority issue for nurse activists from the 1880’s. At the Chicago World’s Fair, British nurses introduced the nurse leaders from all over the world to the idea of state registration for nurses as well as the issue of standards for nurse training schools, which would satisfy a requirement to introduce registration. The struggle for state registration was at the time also the main driving force behind the establishment of nursing organizations in various countries. Keywords: Staff Nurse, Hospital Stress, Tolerance Adjustment, Florence Nightigale. Demand, Shipt System.

The chronic condition of some pathology may lead the patient to a critical condition or even to an end-stage, putting the multidisciplinary group in an ethical conflict; as well as the family. Considering that the objective of healthcare staff has always been the well-being through prevention and correction of the clinical condition, avoiding, at all times, to relief pain and suffer, now having to address the therapeutic help to a “good death” of the patient. The cultural conditions have changed and death is not perceived the same way it used to be, nor by the society nor the group providing attention and care to the critical or end-stage patient, generating expectations for each case, separating the patient from reason and reality (1). Today, science has had a technological advance having a direct impact on the vital function of the patient, having a direct influence on the time, but mainly on the way of death, focusing the attention on the possible decisions of the seriously sick patient, starting the era of an “assisted death”, as opposed to a natural death (1,2).

Responding to disasters and crises is a crucial role for the government to ensure the public safety of society. Responding lies in the counter of crimes of civil or disorders, providing the urgent medical care to injured or sick people, and providing relief of natural and manmade disasters. Despite ongoing attempts to improve emergency response systems in Jeddah, Saudi Arabia, it still suffers from vulnerability. With the current development of the technology and internet of things (IoT), it became necessary to apply these techniques for improving emergency response systems in Jeddah. In this paper, we present Jeddah Smart Emergency Response System (JSERS) as a solution to improve the emergency response system in Jeddah using smart city technologiesز First, we discussed the problems related to the response to accidents and disasters and their history in the Kingdom of Saudi Arabia, especially Jeddah. Consequently, we described the proposed solution, followed by the architecture of the system. Following by the opportunities and the challenges of system implementation are discussed. Finally, a list of suggestions that supports this system implementation and deployment is reported.

This study regarding the selection of treatment between traditional medicine or medical treatment that is utilized by the community in an effort to cure disease. Doctors and shaman are two professions are known to the public, but using a different way. The aim of this research was to determine the meaning of a healthy and pain for the people of Jeru, know the reasons for choosing the traditional healing methods (shaman) or methods of medical treatment (doctor), and determine the factors that drive to determine the method of treatment. The method used in this study is a qualitative approach. The research location selected is Jeru Village, District Tumpang, Malang. This location was chosen as the study site because in this village still found a system of traditional medicine (shaman), and can still be found some medical personnel and some healers (shaman) are frequently visited by the public. Jeru’s people including homogeneous society. Determination of informants consists of 24 informants consisting of offender treatment, the patient, family, and also family health actors. In collecting the data, researchers used observation and interview techniques. Jeru’s society looked healthy and sick are people who feel the presence and absence of disturbances in the body when carrying out its activities. The reason for choosing a method of healing is based on trust, severity of illness, and the cause of the disease. The factors that drive a person to determine the treatment method chosen is based on internal and external factors. Internal comes from a person who wants a cure, while external factors derived from the experience of the people or the community who had suffered from the same disease, and healing which had healed. Early action before choosing between traditional healing or healing of the medical treatment itself. If it is the disease getting worse, then the sick person is looking for other relief efforts, which include traditional medicine, or medical treatment

Abstract The following study provides an insight into Japanese policies on wounded veterans’ relief during the twentieth century. During the long war (1937–1945) with China and later with the Allied Forces (1941–1945), the Japanese government established strong physical, occupational and spiritual rehabilitation programs in addition to several laws that provided pensions or allowances for military disabilities. After the defeat in 1945, under the Occupation’s new rules of democratization and demilitarization, wounded veterans quickly lost all their benefits. Furthermore, their image was devalued in the eyes of society and their voices were marginalized. However, because of their struggles, the State established a new non-discriminatory law for all disabled people. Nevertheless, after the return of Japanese autonomy in 1952, the wounded veterans still felt that they were not treated adequately because no law addressed their specific circumstances. In order to attain their goal, they created a new association of disabled veterans to express their frustration and to lobby the Japanese government for change. Because of their stubborn mobilization, the Law for Special Aid to the Wounded and Sick Retired Soldiers was finally enacted in 1963 and provided veterans with the assistance they needed and for which they had long-since been asking.

In the rural area of Dolj county, composed of 7 counties and a population of over 200,000 inhabitants, until 1881, there was no hospital. With the adoption of the Law for the establishment of rural hospitals, on June 11, 1881, the first steps were taken to put its provisions into practice. The first two rural hospitals were established in 1882, in Filiași and Bechet, financed from the county budget. Later, the hospital in Băilești was to be built, being inaugurated in 1890, followed a few years later by the hospitals in Brabova, Negoiești and Poiana Mare. In the same direction of the spread of hospital assistance in the countryside, infirmaries were established under the direction of health agents in several communes. A not inconsiderable contribution along the same path of improving the health of the inhabitants of the rural area consisted in the establishment of pharmacies in each commune at the insistence of the Superior Sanitary Council, starting in 1886. The role played by the operation of these hospitals in their area is related to their contribution to the relief of the sufferings of the sick in the rural area, as well as the promotion of the professional medical act or the familiarization of the villagers with the new institutions, taking another step on the road to the modernization of Romanian society.

The article investigates self-preservation behavior under risk conditions (COVID-19 pandemic) in the field of tourism. The practices of self-preservation behavior directly depend on the attitude to health as a value, they are implemented as a result of conscious and responsible behavior. Health is an exhaustible resource, its maintenance depends on the lifestyle of the actors. It is shown that the basis of self-preservation behavior is socialization and biological, psychological and physical characteristics of a person that determine the individualized trajectory of a personality focused on "self-project" (creation and improvement of oneself). The formation of everyday practices of self-preservation behavior is associated with both traditional patterns of behavior and personal strategies, which in modern society need to be analyzed by taking into account the latest trends caused by the pandemic. The article compares the initial "pre-pandemic" attitudes of self-preservation behavior with their current state, analyzes the process of their formation. During the COVID-19 pandemic, the unavailability of fullfledged medical care was compensated by the possibility of health tourism, which can be considered as a variant of self-preservation behavior. Other types of tourism (cultural and entertainment, event, etc.) in some cases can be considered as risky, not health-oriented practices. The dynamics of motivation of self-preservation behavior in the tourism sector in the conditions of the COVID-19 pandemic is analyzed. Firstly, the combination of the need for well-being and the desire to improve performance and stress relief is reviewed. Secondly, the activity of using tourist services is restricted due to the fear of getting sick with coronavirus. Thirdly, the Russians lay the responsibility for maintaining health on the state and the Institute of health care. Fourth, the focus of consumers of tourist services is shifting towards medical and health tourism, and tourist routes abroad are also being chosen to get vaccinated against COVID-19 with vaccines approved by WHO.

Caring for the old and the infirm was an organic part of life in village society. Peasant laws formed the legislative basis for providing the elderly and the infirm with care in the nineteenth century. The conditions of the poor in Estonian village society are considered in this article primarily on the basis of court materials. Care for orphans, the elderly and the sick is also observed. The centre of attention is the northern region of Livland in the latter half of the nineteenth century, where the widespread purchasing of farms for perpetuity also quickly altered the legal, economic and social relations that had hitherto prevailed in the area. It is evident that in the latter half of the nineteenth century, the Estonian peasantry had a strategy for how to manage in the event of inevitable aging and the loss of their capacity to work. In that time period, the owners of farms had the best opportunities for securing their old age. In gratuitous contracts or wills drawn up concerning one’s property, a section concerning the upkeep of the bequeather or the giver of the gift and his spouse became customary. Thus this is also a kind of pension agreement. The possession of moveable property or money made it possible to conclude upkeep agreements or to make other agreements. Children were of primary importance since they ordinarily looked after their parents until their parents died. If there were no children in the family or if they were all dead, a foster child was adopted who was also obliged to look after his foster parents. Thus wherever possible, people themselves aspired to actively affect how their old age would proceed. The primary aim thereat was nevertheless the aspiration to manage on one’s own strength in old age as well and not to be a burden on the rural municipality. Few people ended up below the threshold for welfare assistance for the poor from the rural municipality, and they were given aid either temporarily as necessary or continually. The infirm and the elderly accounted for over half of those cared for by the rural municipality, but the relative proportion of disabled persons was also large. The primary task of welfare aid for the poor at that time was considered to be the placement of poor people who were partially capable of working in the ordinary economic and life process in the countryside in one way or another. People who were incapable of working, old people with nobody to look after them, orphans, the ill and the disabled were placed in the care of families either permanently or for a certain limited time in a system of rotation between families in the community. This was supplemented by assistance for the poor. Begging or living on alms in the local area was also tolerated to a certain extent. Begging was a temporary or permanent way of living chosen or embraced by a person for particular economic and social reasons, such as loss of the capacity to work, lack of a place to live, illness, and mental or physical disability. Vagrancy and begging were extreme manifestations of poverty in the latter half of the nineteenth century and early in the twentieth century that demonstrated social exclusion and marginalisation. The migration of the poor to the towns and cities is an indication that poor relief provided by the rural municipalities was insufficient. Even though major changes took place in rural society in the latter half of the 19th century due to the transition to the payment of rents in money, the measurement of lots to consolidate landholdings into farms, and the purchase of farms, the relative proportion of the poor in need of assistance among the rural population increased relatively little, remaining at 1.5 percent of the rural population of Tartu district in 1878, for instance. This can be explained by the fact that the farming population tried to do everything in its power to make certain that it would not be necessary to rely on the assistance of the community of the rural municipality in old age. It turns out that regardless of social changes, the reasons for being reduced to accepting welfare assistance from the rural municipality, and the proportions of the different categories of the poor remained more or less unchanged throughout the nineteenth century. Primarily the elderly and also persons who had lost their capacity to work due to illness or disability continued to be the people receiving poverty assistance. Poorhouses started being built more extensively, however, as an important innovation in the latter half of the nineteenth century, and this altered the former framework of welfare for the poor. This meant a gradual decrease in the former rotational system of community care that took place in farms and its replacement by monetary donations.

“When Giants Pass” Frederick O. Leh, M.D. When giants pass, they leave giant footprints and giant shoes to fill. Dr. Leh Siu Chuan passed away last August 2013, after suffering multi-organ failure following a stroke secondary to sick sinus syndrome. As in life, he was a fighter, refusing to give up the ghost for 3 years and 3 months, living in an intensive care unit at the hospital he spent his life serving and loving. Siu Chuan Y. Leh was born in Manila August 22, 1935, the third generation of Chinese immigrants from the Fukien Province in China. He was the second child in a brood of twelve, easily the brightest child and the apple of his father’s eye. He completed his medical studies at the Pontifical University of Santo Tomas. During the ignominous Vietnam War of the 60’s, he was able to get a position for a residency position in Otolaryngology at the University of Pennsylvania, and trained under the venerable Dr. Atkins, a protégé of both Dr. Jackson Sr. and Dr. Tucker of endoscopic fame. He had to leave his family behind – his wife Benita Leh, and three children – Shirley, Frederick and Sandra. On his second year of training, he sent for his wife and son, Frederick who would later follow in his footsteps as an otolaryngologist. Life was difficult during that time for a married resident. He received a stipend of only $200 a month, and had to moonlight in emergency rooms on weekends to make ends meet. When he finally completed his residency and passed the American Board of Otolaryngology exams, he gave up a possible lucrative partnership with his mentor to go back to the Philippines to serve his countrymen. Dr. Leh was invited to the Chinese General Hospital and Medical Center, and he served there prominently as its brightest Ear Nose and Throat practitioner. He became well-known in the Chinese community, taking time to hold clinic in the Ong’s Association Building along Benavidez in Chinatown. He later served as Chinese General Hospital’s Executive Assistant Medical Director until his health started to fail. He was also very active in the Philippine Otolaryngology scene, serving continuously as a Board Examiner, much feared by examinees for his strict and no-nonsense grilling of would-be diplomats. Dr. Leh rose rapidly through the ranks to become President of the Philippine Society of Otolaryngology Head and Neck Surgery. Under his watch, the PSOHNS expanded exponentially, gaining many new member hospitals and programs. He organized and professionalized the criteria for the accreditation program, ensuring high quality from all applicant programs. With all the kudos, fame and fortune, Dr. Leh was still not done. He was asked to take over a fledgling Tzu Chi Philippine Chapter, part of a Taiwanese Buddhist Foundation seeking to bring relief to the poor of the world. Dr. Leh organized and founded TIMA (the Tzu Chi International Medical Missions and Assistance), which later became the model for other medical missions in the world. For this Dr. Leh was awarded many times by Tzu Chi Foundation. His dream continues as the TIMA continues to treat thousands of people daily, and will soon open a clinic and perhaps a hospital to serve the less fortunate. Dr. Leh Siu Chuan is survived by his wife of 54 years, Benita Leh, and two doctor sons – Patrick, an orthopaedic surgeon, and Frederick, an otolaryngologist, and two daughters – Shirley, an auditor in New York, and Sandra, district manager for E. Excel Pharmaceuticals of Taiwan. He will live on in the memory of his colleagues and loved ones, and all who had the good fortune of knowing him.

ILLNESS, PAIN, AND HEALTH CARE IN EARLY CHRISTIANITY by Helen Rhee. Grand Rapids, MI: Eerdmans Publishing, 2022. 367 pages. Hardcover; $49.99. ISBN: 9780802876843. *"The practice of medicine is an art, not a trade; a calling, not a business; a calling in which your heart will be exercised equally with your head." --William Osler (1849-1919) *Helen Rhee, professor of the History of Christianity at Westmont College, has encapsulated this famous saying in her recent book, Illness, Pain, and Health Care in Early Christianity by demonstrating how partially objective medicine as an early science co-evolved with subjective religious thought throughout early Greek, Roman, and Christian history. Indeed, even today, a patient's pursuit of relief from suffering often involves the clinical science of medicine occurring arm-in-arm with spiritual care. Such examples include use of hospital chaplains, visitation and assistance from members of a congregation, and personal prayer. This book is comprehensive in nature and academic in tone, and Rhee has found some fascinating continuing threads of healthcare occurring in these aspects of Western civilization. *The book begins with general ideas of illness in all three cultures. Greek culture considered the importance of the Hippocratic ideas such as humoralism (defined as various body fluids and their effect on human illness) as well as prioritizing an individual's health to be a societal priority. The emphasis placed on one's individual health inherently makes sense when one considers Greek culture's lack of modern medicine, the absence of understanding public health, the high mortality rate of pregnant women and young infants, and the constant presence of death in their society (pp. 1, 2). A Greek athlete was considered the exemplar of health with the expectation that their health attributes, like all humans, would decline over time. *Roman ideas followed, led by Galen, in which each part of the body was defined simply by its usefulness and its ability to work together in concordance with every body part to make up a healthy human. Thus, Galen believed that all human function descended from a divine design; this was in sharp contrast to the ideas of Epicurus who believed nature's design had random underpinnings. This early philosophical debate involving Roman medicine still continues almost 2,000 years later with regard to a potential purpose versus a lack of purpose in biological evolution. Typically, suggestions for changes in diet and exercise were the main Roman recommendations in the setting of illness, in that medicine and public health would not be viable study areas for many centuries. The author brings up the stark reality of terrible sanitation in ancient Rome which exacerbated many of the infectious pandemics. In fact, pandemics often were considered a part of divine punishment possibly for unknown sins. We can consider the parallels of pandemics of our time, such as those associated with HIV/AIDS or COVID-19, which unfortunately have been incorrectly associated with societal sin. *Subsequent early Christian ideas regarding health and illness received significant influences from both Greco-Roman and Hebrew society. Illness was considered more holistic--encompassing both the physical and the spiritual. Specific cultural influences affecting early Christian society's views on health included the importance of caring for others (for example, Deut. 15:10) and the Levitical dietary restrictions which probably had some health benefits (p. 3). A healthy person would benefit from overall shalom; a decline in one's health could be considered demonic. Jesus was seen as the perfect healer through his miracles, and stories of healing in the Gospels were added to the already-present Greco-Roman influences such as the balancing of humors. Mental illness, which is still under-appreciated and considered an individual "weakness" in much of today's society, was evaluated and treated using the entire gamut of early Christian thought: from being a disease of the soul, to being a result of divine judgment, to being a physical problem (perhaps not yet understood during that time period). *The next section of the book contains ideas of physical pain utilized in all these early societies. Greeks used pain as an essential part of determining a physical diagnosis: pain is still an important concept utilized in modern healthcare. Romans expanded such thinking to consider pain as a disruption of the body's natural state; thus, they emphasized the importance of bringing the body back to its natural order. As an example, Galen felt that patients were not able to explain pain well. and this meant that the final opinion of pain resided solely with the medical provider. Such thoughts have had disastrous effects right up to today, when one considers healthcare's role in causing the recent opioid crisis in the United States (p. 4). Written pain narratives in Roman history were extensive and often seem to model the current history and physical examination process taught to modern medical students. Early Christian ideas of pain were somewhat parallel to Stoic belief structures in which human pain could be used as a learning tool. Early Christian writers often considered the imitation of Christ's suffering through the suffering of an individual as a learning, holy experience. Such ideas eventually led to the concept of the "martyr," which the author describes using examples in wonderful detail. *The last section of the book deals with healthcare in the ancient world, and I found this part of the book most fascinating when considering how healthcare is practiced in modern society. Both Greeks and Romans utilized their temples as places of healing, utilizing prayer and purification rituals. Treatments were extremely limited, mainly due to a lack of understanding the scientific method. Dangerous bleeding, purging, and cauterization were common ancient practices. The author points out that the Romans did build hospitals for a time, but the hospitals were used simply for preserving the health of property (slaves) and soldiers. *Early Christians considered medicine as a gift from God, and their building of early hospitals (in reality, often homes to provide rest and nutrition for the sick) during times of recurrent plagues likely marked a significant advancement in early healthcare as such simple but essential therapies do have healing benefits. It is fascinating to see early writers, such as Origen, believe that more spiritual people would be healed by God while not necessarily requiring medical care from a physician. These propositions parallel pseudo-scientific ideas that still percolate in modern society; the rise of the anti-vaccination movement in some religious movements is a good example. Regardless of the writing of early Christian writers, it is understandable that many patients would continue to follow some of the pagan medical therapies of Greco-Roman society, since good treatment options were limited, while the writing of the ancient Greeks and Romans in essence provided a "second opinion" in care. *I have many good things to say about this book. Rhee goes into great detail regarding the writings of healers in ancient Greek, Roman, and Christian societies. Examples of patients and therapies used to heal in these early historical periods are provided in extensive detail. Many of the medical aspects of prevention continue to echo in today's society, including the emphasis on exercise and diet to improve health, using pain to determine a cause of illness, and the building of hospitals to improve care. Unfortunately, there is also the continuation, in some religious systems, of the idea that illness is due to sin in which prayer alone can cure. Such beliefs are unfortunate; a better belief is that God has provided modern medicine as a gift to improve humanity's well-being. I highly recommend this book, not only for people interested in early healthcare in Greco-Roman and early Christian society, but also for people looking at the evolution of healthcare over time as it began to slowly progress into today's scientific, evidence-based, modern medicine. *Reviewed by John F. Pohl, MD, Professor of Pediatrics, Primary Children's Hospital, University of Utah, Salt Lake City, UT 84113.

The future of Bangladesh belongs to the younger generation. All of us have to do our bit to get them involved in improving the lives of the rural poor. If we do not do so, there will be serious social conflicts. Unless we can provide basic amenities so that the rural poor can live a meaningful life, we will never become a great nation. This is a great challenge for all youngsters and it is our work’s dream that they will take it up so as to make Bangladesh a better place to live and work. This work describes an organization named “Neuron Group” which contains four fields: Edu-Care (Neuron Educational Support Center), Medi-Care (Neuron Medical Support Center), Agri-Care (Neuron Agricultural Support Center) and Relief-Care (Neuron Relief Support Center). Students will have the opportunity to study with the most talented doctors and engineers of the country. The contribution of this work is to keep the students in their studies at pandemic time (covid-19 period) with the help of our website and social media such as Facebook, twitter and Instagram. Other contributions of this work are social awareness, to develop rural areas, create employment, help increase the income of poor people, raise awareness among poor people, bringing poor people into the mainstream of society, assistance in agriculture and financial assistance of poor and marginal farmers. In the district where the "Neuron Group will have a branch", a list of rational poor and destitute based on the wards of each Upazila of the district will be prepared and they will be given food aid from time to time.

Abstract Background Long-term sick leave due to common mental disorders (CMDs) is a great burden in society today, especially among women. A strong intention to return to work (RTW) as well as symptom relief may facilitate RTW in this group. However, there is a lack of knowledge regarding what constitutes a strong intention. The Theory of Planned Behaviour is well-suited to identifying underlying beliefs about intentions to perform a behaviour. By including psychological well-being and perceived health, a more comprehensive picture of determinants of RTW intention might be achieved. Thus, the aim of the present study was to identify associations between RTW beliefs, psychological well-being, perceived health and RTW intentions among women on long-term sick leave due to CMDs, and to do so based on the Theory of Planned Behaviour. Methods The study was cross-sectional. Between October 2019 and January 2020, 282 women on long-term sick leave (> 2 months) due to CMDs were included in the study. The questionnaires for data collection were: “RTW Beliefs Questionnaire”, the “General Health Questionnaire -12” and the “EuroQol Visual Analogue Scale”. Standard multiple regression analysis was performed both with and without adjustment for potential confounders. Results The results showed that a more positive attitude towards RTW, stronger social pressure to RTW, higher perceived control over RTW and higher psychological well-being were associated with stronger RTW intention. The adjusted analysis eliminated the importance of psychological well-being for RTW intention, but showed that women who reported that their employer had taken actions to facilitate their RTW had stronger RTW intention. Conclusion The RTW beliefs, derived from the Theory of Planned Behaviour, were all important for a strong RTW intention, while psychological well-being and perceived health showed weaker associations. Furthermore, having an employer that take actions for facilitating RTW was associated with stronger RTW intentions. Though some caution is warranted regarding the representativeness of the sample, the results do improve our understanding of some important determinants of RTW intention among women on long-term sick leave for CMDs.

By the end of the nineteenth century, the pressures of modern civilization had become so exigent that alienists were decrying the prevalence of “neurasthenia,” and William James would soon diagnose the “sick souls” whose anguished quest for relief from existential despair marked not only an enduring religious archetype but also the widening incompatibility between the demands of industrial and urban society and the needs of the psyche. One proposed remedy was Science and Health with Key to the Scriptures (1875), whose author claimed divine revelation for herself. By 1911, Mary Baker Eddy's movement had attracted so many Jews that the B'nai B'rith had to prohibit its members from subscribing to Christian Science, which Isaac Mayer Wise felt compelled to denounce as “pure quackery” that risked becoming “an epidemic delusion” (27). Another Reform rabbi, Max Heller, blasted Jews for joining a sect that was marred by the “unintelligible twaddle which [their] female savior has managed to spin around the simplest utterances” (28).

Editorial‘In the short but hot summer nights, only by opening doors and windows can the room be cooled down slightly’ complained the famous Chinese poet Fu Du in his poem Summer Night Lament more than 1000 years ago. Currently, people are suffering from the summer heat, with ambient temperatures around or exceeding 40 °C. Phrases such as “killer hot days” are no longer exaggerated statements. Hot weather can not only frustrate people, but also make people sick or even endanger lives owing to heatstroke. Fortunately, scientists have come up with a great invention, which will provide us with some much-needed relief in hot summers—the optical metafabric. The magic of this innovation is that, although it feels just like a normal fabric and has all the necessary properties of a wearable fabric, a garment made with it can cool down one’s body by nearly 5 °C even under direct sunlight, making it ideal for summer clothing. In the last few years, a team led by Prof. Guangming Tao of Huazhong University of Science and Technology has achieved remarkable progress in the area of optical metafabrics, finding new applications for this material and making it more affordable. Now, please follow our Light Science Editor as he explores this amazing new material and finds how it has been used in the industry, society, and Winter Olympics.

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].

Введение. В России число ежегодно болеющих острой респираторной вирусной инфекцией и гриппом достигает более 30 млн человек, а ежегодный суммарный экономический ущерб от острой респираторной вирусной инфекции оценивается в 40 млрд рублей, составляя около 80% ущерба от всех инфекционных болезней и достигая до 90% и выше в структуре инфекционной заболеваемости. В среднем взрослый человек переносит от 2 до 4 простуд в течение года, ребенок болеет от 6 до 9 раз. Больной острой респираторной вирусной инфекцией и гриппом нуждается в эффективном амбулаторном лечении, так как острая респираторная вирусная инфекция и грипп сопровождаются потерей трудоспособности и сопряжены с высокой вероятностью развития осложнений, в том числе жизнеугрожающих. Представляет научный и практический интерес разработка подходов к лечению и профилактике острых респираторных вирусных инфекций у взрослых, возможных к широкому применению в амбулаторных условиях. Цель исследования. Оценить эффективность и безопасность применения препарата интерферона альфа-2b (суппозитории ректальные) для лечения острой респираторной вирусной инфекции и гриппа у пациентов, обратившихся за медицинской помощью на этапе первичного звена. Материалы и методы. Проведено сравнительное, проспективное, открытое исследование с участием 60 пациентов с острой респираторной вирусной инфекцией. Группа 1 (n = 30) получала интерферон альфа-2b (суппозитории ректальные) 3 000 000 МЕ 2 раза в день для лечения заболевания. В группе 2 (n = 30) терапия проводилась в соответствии с рекомендациями по лечению острой респираторной вирусной инфекции у взрослых Минздрава России (2022 г.). Результаты. В группе 1 отмечалось сокращение выраженности симптомов, а также продолжительности лихорадки (на 1,5 дня). Купирование симптомов в основной группе наблюдалось в среднем за 7 дней, в группе сравнения – за 9,5 дней, а продолжительность нетрудоспособности в 1-й группе была на 3 дня меньше по сравнению с группой 2. Заключение. Использование препарата интерферона альфа-2b (суппозитории ректальные) в составе комплексной терапии острой респираторной вирусной инфекции и гриппа, при отсутствии возможности верификации возбудителя, позволяет сократить сроки лечения как в отношении ускорения регресса симптомов, так и сокращения сроков нетрудоспособности, что позволит улучшить качество жизни, уменьшить вероятность развития осложнений, сократить экономические потери пациента и общества. Background. In Russia, the number of people suffering from acute respiratory viral infection and influenza annually reaches more than 30 million people, and the annual total economic damage from acute respiratory viral infection is estimated at 40 billion rubles, accounting for about 80% of the damage from all infectious diseases and reaching up to 90% and more in the structure of infectious diseases. On average, an adult suffers from 2 to 4 colds during the year, a child gets sick from 6 to 9 times. A patient with acute respiratory viral infection and influenza needs effective outpatient treatment, since acute respiratory viral disease and influenza are accompanied by disability and are associated with a high probability of developing complications, including life-threatening ones. Of scientific and practical interest is the development of approaches to the treatment and prevention of acute respiratory viral infections in adults, which can be widely used on an outpatient basis. Objective. The purpose of the study was to evaluate the efficacy and safety of the use of interferon alpha-2b (rectal suppositories) for the treatment of acute respiratory viral infections and influenza in patients who sought medical help at the primary care stage. Materials and methods. A comparative, prospective, open study was conducted involving 60 patients with acute respiratory viral disease. Group 1 (n = 30) received interferon alpha-2b (rectal suppositories) 3 000 000 IU twice a day the treatment of the disease. In group 2 (n = 30) therapy was carried out in accordance with the recommendations for acute respiratory viral disease in adults of the Ministry of Health of the Russian Federation in 2022. Results. In group 1, there was a reduction in the period of fever (1.5 days shorter, relief of all symptoms was observed in an average of 7 days (in the comparison group for 9.5 days), the duration of days of disability was also 3 days less than in comparison group. Conclusion. the use of interferon alpha-2b (rectal suppositories) as part of the complex therapy of acute respiratory viral infections and influenza can reduce the treatment time, both in terms of accelerating the regression of symptoms and reducing the period of disability, which will improve the quality of life, reduce the likelihood of complications, reduce economic losses of the patient and society.

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 circumstances 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. 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Years have come and gone and Bob is still around He’s tied up by his ankles and he’s hanging upside downA lifetime of infection and his lungs all filled with phlegmThe CF would’ve killed him if it weren’t for S&M Supermasochistic Bob has Cystic Fibrosis by Bob Flanagan. Soundtrack from 1997 documentary, Sick: The Life & Death of Bob Flanagan In the 1997 film, Sick: The Life & Death of Bob Flanagan, Supermasochist, artist Bob Flanagan quite literally lays himself bare to the viewer. This is a wrenching documentary which charts the dying Flanagan’s battles with cystic fibrosis (CF), and also explores the impact of this on his art and life. Sick also explores to an explicit degree the sadomasochist practices that permeated Flanagan’s private life and performance art practice, and which he used as a means of asserting control of the chronic pain and infirmity of his medical condition. Sick is not an easy watch. The film evokes feelings of fear, empathy, and horror. It challenges notions of taste and bad taste. It subjects the viewer to witness the vulnerability of the repeatedly tortured and invaded body of the artist, and of his eventual confrontation with death. As performance pieces go, this is an extreme example of body-based art. Where does this extraordinary piece stem from? From which traditions in art does it draw? To answer these questions, it is necessary to examine the framework of disability art, transgressive art, and also the tradition of medical Gothic, or the history of the Gothic body as a site of art—art that involves reading the body as carnivalesque, as degenerate, as ab-human, as abject entity. The Gothic Body as Site of Art The body has long been a site of exploration in medical practice and in artistic practice. The body has been displayed and examined in various forms, as subject, object, or abject entity through ossories, medical collections, museums of pathology, and freak shows. Paintings of crucifixions and martyrdoms, and practices of flagellation have glorified the tortured body of Christians as physical reminders of extreme piety. The abnormal or monstrous body has been a trope in art since the medieval period, often identified with ideas of evil or sin. Anatomical bodies have been referenced and explored by artists since the Renaissance. With the popular explosion of performance art in the 1960’s, bodily practices have been incorporated into site specific art. Artists’ bodies are offered for our gaze, and sometimes for interaction with, all within the context of performance. Although performance art originates in the early 20th century, it was exponents of the 1960’s that firmly aligned this practice with the site of the artist’s body. At this time, the body became a new focus of culture, with the rise in sexual freedom and the accepted use of nudity in performances and happenings. This resulted in the performance of body-based pieces such as Carolee Schneemann’s Meat Joy (1964) and Interior Scroll (1975), Hermann Nitsch and the Viennese Actionists and their Theatre of Orgies and Mysteries (1962), and Vito Acconci’s Seedbed (1971). This legacy of sexual, violent, or abject performances results in the creation of provocative and disturbing contemporary pieces such as Sick that confront the spectator with the vulnerabilities and limits of the living body. Today, contemporary culture is suffused with images of the body, both the idealised bodies of advertising and music videos, and the grotesque and transfigured bodies of contemporary art. Spooner has commented, “Contemporary Gothic is more obsessed with bodies than in any of its previous phases: bodies become spectacle, provoking disgust, modified, reconstructed and artificially augmented” (63). Today, culture’s preoccupation with the body runs the gamut from horror films obsessed with the penetrated body, to subcultural style and body manipulation, and the increasing popularity of plastic surgery makeovers on mainstream television. The body has never been so exposed, so open to the audience’s gaze. Key artists such as Damien Hirst, Mat Collishaw, the Chapman Brothers, Gabriela Friðriksdóttir, and Sue de Beer respond to this contemporary preoccupation by exploring the body in its manifold Gothic forms. This is a rich body of work that uses abject materials, references slasher movies, and plays with notions of identity, societal violence, body-horror, and the grotesque. This article looks specifically at works by contemporary transgressive artists that utilise their own bodies as site of performance, and the challenges to accepted tastes that this work poses. Performances by Bob Flanagan, Ron Athey, and Marina Abramovic are analysed in terms of boundaries, identity, and other implications in using the body of the artist as the site of art. Tropes of torture, pain. and body modification are examined as contesting the parameters of what body limits and of what is acceptable in contemporary art practice. An Intimate Canvas: The Artist’s Body as Site So what does it mean to use your own body as site of exploration? The work of artists who use their own bodies as a site of spectacle, as a medium of art, has several interesting implications. By its very nature, such an act is transgressive. It blurs the boundaries between artwork and artist. This creates an interesting tension between self and other and, indeed, arguably explores the notion of self as other. This work has an autobiographical function, in that it not only reveals universal themes of significance to the artist but, given the intimacy of the canvas, it also betrays personal preoccupations, and signifies the artist’s own relationship with the body and bodily practices. The use of the human body as canvas brings an intense physical and emotional proximity to the piece. The bodily traumas that are witnessed via performance art—whether it is Chris Burden being nailed to a Volkswagen (Trans-fixed, 1974) or Marina Abramović and Ulay collapsing, unconscious, lungs filled with carbon dioxide from reciprocal exchange of breaths (Breathing In/Breathing Out, 1977)—constitute an intimate link with the audience that arises from the shock of witnessing these transgressive acts. The body of the artist exposed in this way—a body normally only viewed by a partner, doctor or close family member—creates immediacy, giving the individual spectator in an intimate connection with the artist. Francesca Gavin, in her introductory essay to Hellbound: New Gothic Art, cites this voyeurism as essential to the experience of viewing Gothic art: “By looking at the violence or horror we become complicit in its creation, part of the cause—hence part of the discomfort in looking” (7). The first of these areas of discomfort to consider is the association of the body with pain, torture and mutilation, and the use of the artist’s body to explore this theme. Pushing the Limits: The Artist’s Body as Site of Pain The work of Marina Abramović has had a powerful effect on the contemporary landscape of body-based performance art that tests the limits of endurance of the corporeal body. Her past projects have focused on the uneasy power exchange between audience and performer. In Rhythm 0 (1974), her first long durational performance, Abramović offered her audience a choice of 72 objects including a gun, a hammer, sugar, and scissors, to be used on her own body, without any limitations on their deployment. This six-hour performance featured a motionless Abramović offering her body passively to the spectators to interact with. The intensity of the resulting video piece is remarkable; the recording of the performance captures the potential dissolution of the societal contract between artist and audience, a mutable discourse of agency and power. Abramović spoke of the sense of fear she experienced during this performance— “I felt really violated: they cut up my clothes, stuck rose thorns in my stomach, one person aimed the gun at my head, and another took it away. It created an aggressive atmosphere” (quoted, Danieri 30). Her work plays constantly with the idea of boundaries and limits, often pushing her physical self past extraordinary barriers of pain and exertion, as in Rhythm 5 (1974) where she lost consciousness as a result of smoke inhalation and had to be rescued by the spectators. Amelia Jones has analysed these performances of pain as central to the artist’s desire to establish a connection with the audience during performances: “While pain cannot be shared, its effects can be projected onto others such that they become the site of suffering […] and the original sufferer can attain some semblance of self-containment (paradoxically, through the very penetration and violation of the body” (230). One could also argue that this sharing of experience also effectively normalises the abnormal body by establishing a common bond between viewer and performer. However, this work raises questions for the viewer. Is what these artists do self-harm, presented on a public stage? Is this ethical? And, importantly, is it within the bounds of taste? The answer, it would seem, lies in issues of agency and control and, of course, in the separation of art from life that occurs due to the act of performing itself. As Coogan puts it “[t]he performance frame is contingent and temporary, holding the performer in a liminal, provisional and suspended place” (1). While Abramović’s work experiments with bodily endurance and performative limits, other artists who produce autobiographical, body-based performance can be located within the world of medical discourse and performed disability. An artist who subverts the boundaries of the body, and taste alike, is Ron Athey, the HIV-positive artist who makes performance work based on blood rituals, torture, and cutting. His use of blood is central to his practice, and the fact that this blood, which is let through performances, contains the HIV virus, gives it a doubly abject aspect. His performance Excerpted Rites Transformation (1995) which took place at the Walker Art Museum in Minneapolis caused an extreme reaction. During this performance Athey pierced own his skin with needles, and also cut into the skin of black artist Daryl Carlton in a mimicry of tribal scarification rituals that highlighted issues of race, then hung handkerchiefs dipped in Carlton’s blood on clotheslines that ran over the heads of the audience. Mary Abbe, an art critic with the Minneapolis Star Tribune who had not attended the performance, wrote an article about the danger posed to the audience by what she wrongly termed Athey’s blood. (Carlton is not HIV positive). It is clear from the tone of this response that such disease causes a profound dis-ease in the beholder. Bob Flanagan’s oeuvre also locates him in this tradition of artists who perform their disability on a public stage. Critics such as Kuppers consider Athey and Flanagan as artists who subvert the medical gaze (Foucault), refusing to accept the passive role of ‘patient’, and defiantly flaunting their abnormal bodies in the public arena. These bodies can also be considered as modified bodies. Sandahl has contextualised Athey’s performance as going beyond the parameters of the human body: “Athey’s radical cyborg identity is a temporary mode of survival, an alternative way of being in there here and now. A body not interested solely in cure nor submissive to medical interventions” (59). Kuppers, in The Scar of Visibility: Medical Performances and Contemporary Art, reflects on Flanagan and Athey’s careers as disabled artists. She examines how Flanagan constructs his identity as a chronically ill artist, and his pain performances that allowed him to avoid attracting the sentimental pity associated with illness; replacing audience empathy with shock and often revulsion. Kuppers highlights Flanagan’s use of dark humour in his performances through songs like Fun to be Dead (1997), which work to subvert the dominance of his illness. In fact, Flanagan’s work often asserts his central belief that his relative longevity (he lived to be 43, a decade longer than most CF sufferers) was achieved by his ability to counter the pain of his chronic condition with the pain of his masochistic suffering. The stereotype that the masochist is snivelling and weak is actually not true. The masochist has to know his or her own body perfectly well and be in full control of their body, in order to give control to somebody else or to give control to pain. So the masochist is actually a very strong person. I think some of that strength is what I use to combat the illness. (Dick) Athey’s description of his relief at the act of cutting echoes Flanagan’s identification of these rites as way of asserting control over a dysfunctional body: “The sight of your own blood, brought forth from your own hand, spells an almost immediate relief, a release to the pressure valve. It’s a violation that you yourself now control.” What effect does this painful and masochistic art have on the audience? On the act of viewing? On taste itself? Taste and Transgression: Beyond the Parameters of the Body The notion of taste is a hotly debated area in contemporary art practice—arguments rage as to what constitutes good or bad taste. Woodward argues that “[B]ad taste often passes for avant-garde taste these days—so long as the artist signals ‘transgressive’ intent” (1). Grunenberg (1997) has addressed the problematic notion of the audience engagement with this mode of Gothic art, asking whether it has ilost its power to shock. He contends that with the contemporary saturation of all media with violent and shocking imagery, “the ability to be shocked and moved by real or fictitious images of horror has been showing positive signs of attrition.” Nevertheless, the proximity of performance, the immediacy of the artist’s body as canvas, the feelings of horror, empathy, and even wonder occasioned by the manipulation and excesses of the body, continue to draw audiences. The artist’s body as site of performance becomes a space in which the audience may inscribe their own narratives. The body is a locus of projection, almost ab-human, “a not-quite-human subject, characterised by its morphic variability, continually in danger of becoming not-itself, becoming other” (Hurley 3–4). As the artist’s body becomes ever more manipulated and pushed beyond boundaries of taste and pain, it forces artist and audience alike to ask what lies beyond the parameters of the body. Experimentation with torture methods, with cutting, with abject materials, seems to lead back inevitably to the notion of Gothic, othered body, and a desire to pass beyond the boundaries of the repeatedly invaded and wracked body. Once you transgress the boundaries of the body, the logical locus that lies beyond is death. Dick’s Sick documents Bob Flanagan’s death, which formed part of the agreement between documentary maker and artist before shooting. Flanagan hoped his body art would continue beyond death: “I want a wealthy collector to finance an installation in which a video camera will be placed in the coffin with my body, connected to a screen on the wall, and whenever he wants to, the patron can see how I’m coming along” (Dick). Playing with the shadow of death becomes a mode of performance itself. Abramović recalls her acceptance of this fact in her early performance pieces: “When I was in Yugoslavia I was always thinking that art was a kind of question between life and death and some of my performances really included the possibility of dying, you know, during the piece, it could happen” (quoted in McEvilley 15). She also records her fear experienced during Rhythm 0 (1974), stating “What I learned was that [... ]if you leave it up to the audience, they can kill you” (quoted in Danieri 29). Death has receded from us in the 21st century. Death happens in hospitals, in the antiseptic confines of the Intensive Care Unit, it is medicated and mediated by medical staff. Traditional rituals of deathbed conversations and posthumous wakes are gradually disappearing. The discourse of death has grown silent except through the medium of the Gothic and especially the Gothic body, as the Gothic “consistently attempts to speak about the unspeakable—that is, death” (McGrath 154). Artists such as Abramović, Flanagan, and Athey function within this Gothic tradition. By insistently presenting their Gothic bodies, they force the audience to acknowledge death, transgression, and decay as realities. With collaborative partners, they mediate the process of surgery, torture, dying, and even the moment of death through photography and lens-based media. This use of media in capturing the moment also functions in a contemporary post-religious society as a mode of replication and, even, perhaps, of immortality. Bold, provocative, and challenging, the work of these transgressive artists continues to challenge the idea of bodily limits and boundaries and highlight the notion of the body as site of transformation. They continue to challenge our taste, our definition of art, and our comfort as audience. The words of Gavin come again to mind: “By looking at the violence or horror we become complicit in its creation, part of the cause—hence part of the discomfort in looking” (7). Using the artist’s body as site of performance forces us to challenge our conception of art, illness, life and death and leads to a reappraisal of taste itself. References Abbe, Mary. “Bloody Performance Draws Criticism.” Star Tribune 24 Mar. 1994. 1A. Abramovic, Marina. [website] 4 Feb. 2014. ‹http://www.marinaabramovicinstitute.org›. Athey, Ron. [website] 4 Feb. 2014. ‹http://ronatheynews.blogspot.ie›. Coogan, Amanda. “What is Performance Art?.” Irish Museum of Modern Art [website] (2011). 4 Feb. 2014 ‹http://www.imma.ie/en/page_212496.htm›. Daneri, Anna, Giacinto Di Pietrantonio, L. Hegyi, SR Sanzio, & A. Vettese. Eds. Marina Abramović. Milan: Charta, 2002. Dick, Kirby. Sick: The Life & Death of Bob Flanagan, Supermasochist. Dir. Kirby Dick. 1997. Flanagan, Bob. [website] 4 Feb. 2014. ‹http://vv.arts.ucla.edu/terminals/flanagan/flanagan.html›. Gavin, Francesca. Hellbound: New Gothic Art. London: Laurence King Publishing, 2008. Grunenberg, Christoph. “Unsolved Mysteries: Gothic Tales from Frankenstein to the Hair Eating Doll.” Gothic: Transmutations of Horror in Late Twentieth Century Art. Ed. Christoph Grunenberg. Boston: MIT Press, 1997. Hurley, Kelly. The Gothic Body: Sexuality, Materialism, and Degeneration at the Fin de Siècle. Cambridge: Cambridge UP, 1997. 160–212. Kuppers, Petra. The Scar of Visibility: Medical Performances and Contemporary Art. Minneapolis: U of Minnesota P, 2007. Mc Grath, Patrick. “Transgression and Decay.” Gothic: Transmutations of Horror in Late Twentieth Century Art. Ed. Christoph Grunenberg. Boston: MIT Press, 1997. 153–58. Spooner, Catherine. Contemporary Gothic. London: Reaktion Books, 2006. Sandahl, Carrie. “Performing Metaphors: Aids, Disability and Technology.” Contemporary Theatre Review 11.3–4 (2001): 49–60. Woodward, Richard B. “When Bad is Good.” ARTnews [website] (2012). 4 Feb. 2014. ‹http://www.artnews.com/2012/04/12/when-bad-is-good›. Zylinska, Joanna. The Cyborg Experiments: The Extensions of the Body in the Media Age. London: Continuum, 2002.

Introduction In The X-Files episode “Humbug”, agents Scully and Mulder travel to Florida to investigate a series of murders taking place in a community of sideshow performers, or freaks. At the episode’s end, one character, a self-made freak and human blockhead, muses on the future of the freak community:twenty-first century genetic engineering will not only eradicate the Siamese twins and the alligator-skinned people, but you’re going to be hard-pressed to find a slight overbite or a not-so-high cheek bone … . Nature abhors normality. It can’t go very long without creating a mutant. (“Humbug”) Freaks, he says, are there to remind people of the necessity of mutations. His observation that genetic engineering will eradicate anomalies of nature accurately illustrates the gradual shift that society was witnessing in the late twentieth century away from the anomalous freak and toward surgical perfection. Yet this desire for perfection, which has manifested itself in often severe surgical deformities, has seen a shift in what constitutes the freak for a contemporary audience, turning what was once an anomaly into a mass-produced creation. While the freaks of the nineteenth and early twentieth century were born with facial or anatomical deformities that warranted their place in the sideshow performance (bearded ladies, midgets, faints, lobster men, alligator-skinned people, etc.), freaks of the twenty-first century can be seen as something created by a plastic surgeon, a shift which undermines the very understanding of freak ontology. As Katherine Dunne put it: “a true freak cannot be made. A true freak must be born” (28). In her discussion of the monstrous body, Linda Williams writes that “the monster’s body is perceived as freakish in its possession of too much or too little” (63). This may have included a missing or additional limb, distorted sizes and heights, and anatomical growths. John Merrick, or the “Elephant Man” (fig. 1), as he was famously known, perfectly embodied this sense of excess that is vital to what people perceive as the monstrous body. In his discussion of freaks and the freakshow, Robert Bogdan notes that promotional posters exaggerated the already-deformed nature of freaks by emphasising certain physical anomalies and turning them into mythological creatures: “male exhibits with poorly formed arms were billed as ‘The Seal Man’; with poorly formed legs, ‘the Frog Man’; with excesses of hair, ‘The Lion Man’ or ‘Dog Boy’” (100). Figure 1: John Merrick (the Elephant Man) <https://www.pinterest.com.au/pin/193584483966192229/>.The freak’s anomalous nature made them valuable, financially but also culturally: “in many ways, the concept of ‘freak,’ is an anomaly in current social scientific thinking about demonstrable human variation. During its prime the freak show was a place where human deviance was valuable, and in that sense valued” (Bogdan 268). Many freaks were presented as “human wonders”, while “their claims to fame were quite commonplace” (Bogdan 200). Indeed, Bogdan argues that “while highly aggrandized exhibits really were full of grandeur, with respectable freaks the mundane was exploited as amazing and ordinary people were made into human wonders” (200). Lucian Gomoll similarly writes that freakshows “directed judgement away from the audience and onto the performers, assuring observers of their own unmarked normalcy” (“Objects of Dis/Order” 205).The anomalous nature of the freak therefore promoted the safety of normality at the same time as it purported to showcase the brilliance of the extraordinary. While the freaks themselves were normal, intelligent people, the freakshow served as a vehicle to gaze at oneself with a sense of relief. As much as many freakshows attempt to dismantle notions of normality, they serve to emphasise empathy, not envy. The anomalous freak is never an envied body; the particular dimensions of the freakshow mean that it is the viewer who is to be envied, and the freak who is to be pitied. From Freakshow to SideshowIn nineteenth-century freakshows, exploitation was rife; as Alison Piepmeier explains, “many of the so-called Aztecs, Pinheads, and What Is Its?”, were, in fact, “mentally disabled people dressed in wild costumes and forced to perform” (53). As a result, “freakishness often implied loss of control over one’s self and one’s destiny” (53). P.T. Barnum profited from his exploitation of freaks, while many freaks themselves also benefited from being exhibited. As Jessica Williams writes, “many freak show performers were well paid, self-sufficient, and enjoyed what they did” (69). Bogdan similarly pointed out that “some [freaks] were exploited, it is true, but in the culture of the amusement world, most human oddities were accepted as showmen. They were congratulated for parlaying into an occupation [that], in another context, might have been a burden” (268). Americans of all classes, Anissa Janine Wardi argues, enjoyed engaging in the spectacle of the freak. She writes that “it is not serendipitous that the golden age of the freak show coincided with the building of America’s colonial empire” (518). Indeed, the “exploration of the non-Western world, coupled with the transatlantic slave trade, provided the backdrop for America’s imperialist gaze, with the native ‘other’ appearing not merely in the arena of popular entertainment, but particularly in scientific and medical communities” (518). Despite the accusations levelled against Barnum, his freakshows were seen as educational and therefore beneficial to both the public and the scientific community, who, thanks to Barnum, directly benefited from the commercialisation of and rising public interest in the freak. Discussing “western conventions of viewing exotic others”, Lucian Gomoll writes that “the freak and the ‘normal’ subject produced each other in a relationship of uneven reciprocity” (“Feminist Pleasures” 129). He writes that Barnum “encouraged onlookers to define their own identities in contrast to those on display, as not disabled, not animalistic, not androgynous, not monstrous and so on”. By the twentieth century, he writes, “shows like Barnum’s were banned from public spaces as repugnant and intolerable, and forced to migrate to the margins” (129).Gomoll commends the Freakatorium, a museum curated by the late sword swallower Johnny Fox, as “demonstrating and commemorating the resourcefulness and talents of those pushed to the social margins” (“Objects of Dis/Order” 207). Gomoll writes that Fox did not merely see freaks as curiosities in the way that Barnum did. Instead, Fox provided a dignified memorial that celebrated the uniqueness of each freak. Fox’s museum displays, he writes, are “respectable spaces devoted to the lives of amazing people, which foster potential empathy from the viewers – a stark contrast to nineteenth-century freakshows” (205). Fox himself described the necessity of the Freakatorium in the wake of the sideshow: New York needs a place where people can come see the history of freakdom. People that were born with deformities that were still amazing and sensitive people and they allowed themselves to be viewed and exhibited. They made a good living off doing that. Those people were to be commended for their courageousness and bravery for standing in front of people. (Hartzman)Fox also described the manner in which the sideshow circuit was banned over time:then sideshows went out because some little girl was offended because she thought the only place she could work was the sideshow. Her mother thought it was disgraceful that people exhibited themselves so she started calling the governor and state’s attorney trying to get sideshows banned. I think it was Florida or South Carolina. It started happening in other states. They said no exhibiting human anomalies. These people who had been working in sideshows for years had their livelihood taken away from them. What now, they’re supposed to go be institutionalized? (Hartzman) Elizabeth Stephens argues that a shift occurred in the early twentieth century, and that by the late ‘30s “people with physical anomalies had been transformed in the cultural imagination from human oddities or monsters to sick people requiring diagnoses and medical intervention” (Stephens). Bogdan noted that by the 1930s, “the meaning of being different changed in American society. Scientific medicine had undermined the mystery of certain forms of human variation, and the exotic and aggrandized modes had lost their flamboyant attractiveness” (274). So-called freaks became seen as diseased bodies who “were now in the province of physicians, not the general public” (274). Indeed, scientific interest transformed the freak into a medical curiosity, contributing to the waning popularity of freakshows. Ironically, although the freaks declined in popularity as they moved into the medical community, medicine would prove to be the domain of a new kind of freak in the ensuing years. The Manufactured Freak As the freakshow declined in popularity, mainstream culture found other subjects whose appearance provoked curiosity, awe, and revulsion. Although plastic surgery is associated with the mid-to-late twentieth century and beyond, it has a long history in the medical practice. In A History of Plastic Surgery, Paolo Santoni-Rugiu and Philip J. Sykes note that “operations for the sole purpose of improving appearances came on the scene in 1906” (322). Charles C. Miller was one of the earliest pioneers of plastic surgery; Santoni-Rugiu and Sykes write that “he never disguised the fact that his ambition was to do Featural Surgery, correcting imperfections that from a medical point of view were not considered to be deformities” (302). This attitude would fundamentally transform notions of the “normal” body. In the context of cosmetic surgery, it is the normal body that becomes manipulated in order to produce something which, despite intentions, proves undoubtedly freakish. Although men certainly engage in plastic surgery (notably Igor and Grichka Bogdanoff) the twenty-first century surgical freak is synonymous with women. Kirsty Fairclough-Isaacs points out the different expectations levelled against men and women with respect to ageing and plastic surgery. While men, she says, “are closely scrutinised for attempting to hide signs of ageing, particularly hair loss”, women, in contrast, “are routinely maligned if they fail to hide the signs of ageing” (363). She observes that while popular culture may accept the ageing man, the ageing woman is less embraced by society. Consequently, women are encouraged—by the media, their fans, and by social norms around beauty—to engage in surgical manipulation, but in such a way as to make their enhancements appear seamless. Women who have successful plastic surgery—in the sense that their ageing is well-hidden—are accepted as having successfully manipulated their faces so as to appear flawless, while those whose surgical exploits are excessive or turn out badly become decidedly freakish. One of the most infamous plastic surgery cases is that of Jocelyn Wildenstein, also known as “catwoman”. Born Jocelynnys Dayannys da Silva Bezerra Périsset in 1940, Wildenstein met billionaire art dealer Alec N. Wildenstein whom she married in the late 1970s. After discovering her husband was being unfaithful, Wildenstein purportedly turned to cosmetic surgery in order to sculpt her face to resemble a cat, her husband’s favourite animal. Ironically but not surprisingly, her husband purportedly screamed in terror when he saw his wife’s revamped face for the first time. And although their relationship ended in divorce, Wildenstein, dubbed “the Bride of Wildenstein”, continued to visit her plastic surgeon, and her face became progressively more distorted over the years (Figure 2). Figure 2: Jocelyn Wildenstein over the years <https://i.redd.it/vhh3yp6tgki31.jpg>. The exaggerated and freakish contours of Wildenstein’s face would undoubtedly remind viewers of the anatomical exaggerations seen in traditional freaks. Yet she does not belong to the world of the nineteenth century freak. Her deformities are self-inflicted in an attempt to fulfil certain mainstream beauty ideals to exaggerated lengths. Like many women, Wildenstein has repeatedly denied ever having received plastic surgery, claiming that her face is natural, while professing admiration for Brigitte Bardot, her beauty idol. Such denial has made her the target of further criticism, since women are not only expected to conceal the signs of ageing successfully but are also ironically expected to be honest and transparent about having had work done to their faces and bodies, particularly when it is obvious. The role that denial plays not just in Wildenstein’s case, but in plastic surgery cases more broadly, constitutes a “desirability of naturalness” (122), according to Debra Gimlin. There is, she argues, an “aesthetic preference for (surgically enhanced) ‘naturalness’” (122), a desire that sits between the natural body and the freak. This kind of appearance promotes more of an uncanny naturalness that removes signs of ageing but without being excessive; as opposed to women whose use of plastic surgery is obvious (and deemed excessive according to Williams’ “monstrous body”) the unnatural look that some plastic surgery promotes is akin to an absence of normal features, such as wrinkles. One surgeon that Gimlin cites argues that he would not remove the wrinkles of a woman in her 60s: “she’s gonna look like a freak without them”, he says. This admission signifies a clear distinction between what we understand as freakish plastic surgery (Wildenstein) and the not-yet-freakish appearance of women whose surgically enhanced appearance is at once uncanny and accepted, perpetuating norms around plastic surgery and beauty. Denial is thus part of the fabric of performing naturalness and the desire to make the unnatural seem natural, adding another quasi-freakish dimension to the increasingly normalised appearance of surgically enhanced women. While Wildenstein is mocked for her grotesque appearance, in addition to her denial of having had plastic surgery, women who have navigated plastic surgery successfully are congratulated and envied. Although contemporary media increasingly advocates the ability to age naturally, with actresses like Helen Mirren and Meryl Streep frequently cited as natural older beauties, natural ageing is only accepted to the extent that this look of naturalness is appeasing. Unflattering, unaltered naturalness, on the other hand, is demonised, with such women encouraged to turn to the knife after all in order to achieve a more acceptable look of natural ageing, one that will inevitably and ironically provoke further criticism. For women considering plastic surgery, they are damned if they do and damned if they don’t. Grant McCracken notes the similarities between Wildenstein and the famous French body artist Orlan: “like Orlan, Wildenstein had engaged in an extravagant, destructive creativity. But where Orlan sought transformational opportunity by moving upward in the Renaissance hierarchy, toward saints and angels, Wildenstein moved downwards, toward animals” (25). McCracken argues that it isn’t entirely clear whether Orlan and Wildenstein are “outliers or precursors” to the contemporary obsession with plastic surgery. But he notes how the transition of plastic surgery from a “shameful secret” to a ubiquitous if not obligatory phenomenon coincides with the surgical work of Orlan and Wildenstein. “The question remains”, he says, “what will we use this surgery to do to ourselves? Orlan and Wildenstein suggest two possibilities” (26).Meredith Jones, in her discussion of Wildenstein, echoes the earlier sentiments of Williams in regards to the monster’s body possessing too much or too little. In Wildenstein’s case, her freakishness is provoked by excess: “when too many body parts become independent they are deemed too disparate: wayward children who no longer lend harmony or respect to their host body. Jocelyn Wildenstein’s features do this: her cheeks, her eyes, her forehead and her lips are all striking enough to be deemed untoward” (125). For Jones, the combination of these features “form a grotesquery that means their host can only be deemed, at best, perversely beautiful” (125). Wildenstein has been referred to as a “modern-day freak”, and to a certain extent she does share something in common with the nineteenth century freak, specifically through the manner in which her distorted features invite viewers to gawk. Like the Elephant Man, her freakish body possesses “too much”, as Williams put it. Yet her appearance evokes none of the empathy afforded traditional freaks, whose facial or anatomical deformities were inherent and thus cause for empathy. They played no role in the formation of their deformities, only reclaiming agency once they exhibited themselves. While Wildenstein is, certainly, an anomaly in the sense that she is the only known woman who has had her features surgically altered to appear cat-like, her appearance more broadly represents an unnerving trajectory that reconstructs the freak as someone manufactured rather than born, upending Katherine Dunne’s assertion that true freaks are born, not made. Indeed, Wildenstein can be seen as a precursor to Nannette Hammond and Valeria Lukyanova, women who surgically enhanced their faces and bodies to resemble a real-life Barbie doll. Hammond, a woman from Cincinnati, has been called the first ‘Human Barbie’, chronicling the surgical process on her Instagram account. She states that her children and husband are “just so proud of me and what I’ve achieved through surgery” (Levine). This surgery has included numerous breast augmentations, botox injections and dental veneers, in addition to eyelash extensions and monthly fake tans. But while Hammond is certainly considered a “scalpel junkie”, Valeria Lukyanova’s desire to transform herself into a living Barbie doll is particularly uncanny. Michael’s Idov’s article in GQ magazine titled: “This is not a Barbie Doll. This is an Actual Human Being” attests to the uncanny appearance of Lukyanova. “Meeting Valeria Lukyanova is the closest you will come to an alien encounter”, Idov writes, describing the “queasy fear” he felt upon meeting her. “A living Barbie is automatically an Uncanny Valley Girl. Her beauty, though I hesitate to use the term, is pitched at the exact precipice where the male gaze curdles in on itself.” Lukyanova, a Ukrainian, admits to having had breast implants, but denies that she has had any more modifications, despite the uncanny symmetry of her face and body that would otherwise allude to further surgeries (Figure 3). Importantly, Lukyanova’s transformation both fulfils and affronts beauty standards. In this sense, she is at once freakish but does not fit the profile of the traditional freak, whose deformities are never confused with ideals of beauty, at least not in theory. While Johnny Fox saw freaks as talented, unique individuals, their appeal was borne of their defiance of the ideal, rather than a reinforcement of it, and the fact that their appearance was anomalous and unique, rather than reproducible at whim. Figure 3: Valeria Lukyanova with a Barbie Doll <http://shorturl.at/mER06>.Conclusion As a modern-day freak, these Barbie girls are a specific kind of abomination that undermines the very notion of the freak due to their emphasis on acceptance, on becoming mainstream, rather than being confined to the margins. As Jones puts it: “if a trajectory […] is drawn between mainstream cosmetic surgery and these individuals who have ‘gone too far’, we see that while they may be ‘freaks’ now, they nevertheless point towards a moment when such modifications could in fact be near mainstream” (188). The emphasis that is placed on mainstream acceptance and reproducibility in these cases affronts traditional notions of the freak as an anomalous individual whose features cannot be replicated. But the shift that society has seen towards genetic and surgical perfection has only accentuated the importance of biological anomalies who affront the status quo. While Wildenstein and the Barbie girls may provoke a similar sense of shock, revulsion and pity as the Elephant Man experienced, they possess none of the exceptionality or cultural importance of real freaks, whose very existence admonishes mainstream standards of beauty, ability, and biology. References Bogdan, Robert. Freak Show: Presenting Human Oddities for Amusement and Profit. Chicago and London: U of Chicago P, 1990. Dunne, Katherine. Geek Love. London: Abacus, 2015. Fairclough-Isaacs, Kirsty. "Celebrity Culture and Ageing." Routledge Handbook of Cultural Gerontology. Eds. Julia Twigg and Wendy Martin. New York: Routledge, 2015. 361-368.Gimlin, Debra. Cosmetic Surgery Narratives: A Cross-Cultural Analysis of Women’s Accounts. New York: Palgrave Macmillan, 2012. Gommol, Lucian. “The Feminist Pleasures of Coco Rico’s Social Interventions.” Art and the Artist in Society. Eds. José Jiménez-Justiniano, Elsa Luciano Feal, and Jane Elizabeth Alberdeston. Newcastle upon Tyne: Cambridge Scholars Publishing, 2013. 119-134. ———. “Objects of Dis/Order: Articulating Curiosities and Engaging People at the Freakatorium.” Defining Memory: Local Museums and the Construction of History in America’s Changing Communities. Eds. Amy K. Levin and Joshua G. Adair. Lanham: Rowman & Littlefield, 2017. 197-212. Hartzman, Marc. “Johnny Fox: A Tribute to the King of Swords.” Weird Historian. 17 Dec. 2017. <https://www.weirdhistorian.com/johnny-fox-a-tribute-to-the-king-of-swords/>.“Humbug.” The X-Files: The Complete Season 3. Writ. Darin Morgan. Dir. Kim Manners. Fox, 2007. Idov, Michael. “This Is Not a Barbie Doll. This Is an Actual Human Being.” GQ. 12 July 2017. <https://www.gq.com/story/valeria-lukyanova-human-barbie-doll>.Jones, Meredith. Skintight: An Anatomy of Cosmetic Surgery. Oxford: Berg, 2008.McCracken, Grant. Transformations: Identity Construction in Contemporary Culture. Bloomington and Indianapolis: Indiana UP, 2008.Levine, Daniel D. “Before and After: What $500,000 of Plastic Surgery Bought Human Barbie.” PopCulture.com. 7 Dec. 2017. <https://popculture.com/trending/news/nannette-hammond-before-human-barbie-cost-photos/>. Piepmeier, Alison. Out in Public: Configurations of Women's Bodies in Nineteenth-Century America. Chapel Hill and London: U of North Carolina P, 2004. Santoni-Rugiu, Paolo, and Philip J. Sykes. A History of Plastic Surgery. Berlin: Springer-Verlag, 2017. Stephens, Elizabeth. “Twenty-First Century Freak Show: Recent Transformations in the Exhibition of Non-Normative Bodies.” Disability Studies Quarterly 25.3 (2005). <https://dsq-sds.org/article/view/580/757>.Wardi, Anissa Janine. “Freak Shows, Spectacles, and Carnivals: Reading Jonathan Demme’s Beloved.” African American Review 39.4 (Winter 2005): 513-526.Williams, Jessica L. Media, Performative Identity, and the New American Freak Show. London and New York: Palgrave MacMillan, 2017. Williams, Linda. “When the Woman Looks.” Horror, The Film Reader. Ed. Mark Jancovich. London and New York: Routledge, 2002. 61-66.

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 circumstances 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 circumstances, 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.

It seems clear that people who are deaf ... struggle continually against the meanings that others impose on their experience, and the way that this separates them from others. They struggle for acknowledgement of the way they see their lives and wish to live them, and aspire to connection?with other people, to share and belong. (David Moorhead. Knowing Who I Am. 1995. 85.) Nga Tapuwae and Before I am deaf but, before that part of my life started, I was hearing and worked for many years as a librarian in New Zealand. My first job was in a public library located within a secondary school Nga Tapuwae Secondary College in South Auckland. Its placement was a 1970’s social experiment to see if a public library could work within the grounds of a community college (and the answer was no, it could not). The experience was a great introduction for me to the Maori and Polynesian cultures that I had not previously encountered. Until then, I was wary of both groups, and so it was a revelation to realise that although there were many social problems in the area including low literacy, many of the children and teenagers were bright, talented individuals. They simply did not connect to the Anglo-Saxon reading materials we offered. Years later, my interest in the social dynamics of literacy led to my enrolment in a post-graduate literacy degree in Melbourne. This action may have saved my life because at the end of this course, a minor ailment resulted in a visit to the university doctor who diagnosed me with the life-threatening medical condition, Neurofibromatosis Type 2 (NF 2). NF2 is a late onset genetic condition in which one’s body grows tumours, always on both hearing nerves, sometimes elsewhere as well. The tumours usually cause deafness and can cause death. I was told I needed to have my tumours removed and would probably become fully deaf as a result. This is how my life as I knew it changed direction and I started the long journey towards becoming deaf. Diagnosis and Change Predictably, once diagnosed, friends and colleagues rallied to comfort me. I was told things probably weren’t as bad as they sounded. Helen Keller was mentioned several times as an example of someone who had succeeded despite being deaf and blind. ‘Really,’ my friends asked, ‘how bad can it be? ‘Inside myself however, it couldn’t have been worse. A day later the enormity of it all hit me and I became inconsolable. A friend drove me back to the doctor and she did two things that were to change my life. She referred me to the University’s counselling services where, happily, I was counselled by Elizabeth Hastings who later went on to become Australia’s first Disability Services Commissioner. Secondly, the doctor organised for me to visit the HEAR Service at the Victorian Deaf Society (VDS). Again by happy accident, my friend and I stumbled into the ‘wrong building’ where I ended up meeting John Lovett, who was Deaf and the CEO there, via an interpreter. When I met John Lovett I was distraught but, unlike other people, he made no attempt to stop me crying. He simply listened carefully until I realised he understood what I was saying and stopped crying myself. He said my fears that I could end up alone and lonely were valid and he suggested the best thing I could do for myself was to join the ‘Deaf community’; a community. I had never heard of. He explained it was made up of people like him who used Australian sign language (Auslan) to communicate. He was so engaging and supportive that this plan sounded fine to me. By the time we finished talking and he walked me over to the HEAR Service, I was so in his thrall that I had enrolled for a Deaf awareness workshop, an Auslan class, and had plans to join the Deaf community. Had I stayed on and learned Auslan, my life may well have followed a different path, but this was not to be at that time. Becoming Hearing Impaired (HI) Across at the HEAR service, an alternate view of my potential future was put to me. Instead of moving away from everything familiar and joining the Deaf community, I could learn to lip-read and hopefully use it to stay in the workforce and amongst my hearing friends. I had a cousin and aunt who were late deafened; my cousin in particular was doing well communicating with lip-reading. I discussed this with friends and the idea of staying with the people I already knew sounded far less confronting than joining the Deaf community and so I chose this path. My surgeon was also optimistic. He was confident he could save some of my hearing. Suddenly learning Auslan seemed superfluous. I phoned John Lovett to explain, and his response was that I should do what suited me, but he asked me to remember one thing: that it was me who decided to leave the Deaf Community, not that the Deaf community had not wanted me. He told me that, if I changed my mind, I could always go back because the door to the Deaf community would always be open and he would be still be there. It would be a decade before I decided that I wanted to go back through that door, and around that time this great man passed away, but I never forgot my promise to remember our conversation. It, and a few other exchanges I had with him in the following years, stayed at the back of my mind, especially as my residual hearing sank over the years, and the prospect of total deafness hung over me. When I had the surgery, my surgeon’s optimism proved unfounded. He could not save any hearing on my left side and my facial and balance nerves were damaged as well. The hospital then decided not to operate again, and would only attempt to remove the second tumour if it grew and threatened my health again. Consequently, for close to a decade, my life was on hold in many ways. I feared deafness—for me it signalled that my life as I knew it would end and I would be isolated. Every hearing test was a tense time for me as I watched my remaining hearing decline in a slow, relentless downward path on the graph. It was like watching the tide go out knowing it was never going to come in as fully again. My thinking started to change too. Within a week of my diagnosis I experienced discrimination for the first time. A library school that had offered me a place in its post graduate librarianship course the following year made it clear that they no longer wanted me. In the end it did not matter as I was accepted at another institution but it was my first experience of being treated less favourably in the community and it was a shock. After the surgery my life settled down again. I found work in public libraries again, rekindled an old relationship and in 1994 had a baby boy. However, living with a hearing loss is hard work. Everything seemed tiring, especially lip-reading. My ears rejected my hearing aid and became itchy and inflamed. I became aware that my continual hearing problems were sometimes seen as a nuisance in work situations. Socialising lost a lot of its appeal so my social world also contracted. Around this time something else started happening. Outside work, people started expressing admiration for me—words like ‘role model’ and ‘inspiring’ started entering the conversation. Any other time I might have enjoyed it but for me, struggling to adapt to my new situation, it felt odd. The whole thing reminded me of being encouraged to be like Helen Keller; as if there is a right way to behave when one is deaf in which you are an inspiration, and a wrong way in which one is seen as being in need of a role model. I discussed this with Elizabeth Hastings who had helped me prepare mentally for the surgery and afterwards. I explained I felt vulnerable and needy in my new situation and she gave me some useful advice. She thought feeling needy was a good thing as realising one needs people keeps one humble. She observed that, after years of intellectualising, educated people sometimes started believing they could use intellectualisation as a way to avoid painful emotions such as sadness. This behaviour then cut them off from support and from understanding that none of us can do it alone. She believed that, in always having to ask for help, people with disabilities are kept aware of the simple truth that all people depend on others to survive. She said I could regard becoming deaf as a disability, or I could choose to regard it as a privilege. Over the years the truth of her words became increasingly more evident to me as I waded through all the jargon and intellectualisation that surrounds discussion of both deafness and the disability arena, compared to the often raw emotion expressed by those on the receiving end of it. At a personal level I have found that talking about emotions helps especially in the face of the ubiquitous ‘positive thinking’ brigade who would have us all believe that successful people do not feel negative emotions regardless of what is happening. The Lie Elizabeth had initially sympathised with my sadness about my impending deafness. One day however she asked why, having expressed positive sentiments both about deaf people and people with disabilities, I was saying I would probably be better off dead than deaf? Up until that conversation I was unaware of the contradictions between what I felt and what I was saying. I came to realise I was living a lie because I did not believe what I was telling myself; namely, that deaf people and people with disabilities are as good as other people. Far from believing this, what I really thought was that being deaf, or having a disability, did lessen one’s worth. It was an uncomfortable admission, particularly sharing it with someone sitting in a wheelchair, and especially as up until then I had always seen myself as a liberal thinker. Now, faced with the reality of becoming deaf, I had been hoist by my own petard, as I could not come to terms with the idea of myself as a deaf person. The Christian idea of looking after the ‘less fortunate’ was one I had been exposed to, but I had not realised the flip side of it, which is that the ‘less fortunate’ are also perceived as a ‘burden’ for those looking after them. It reminded me of my initial experiences years earlier at Nga Tapuwae when I came face to face with cultures I thought I had understood but did not. In both cases it was only when I got to know people that I began to question my own attitudes and assumptions and broadened my thinking. Unfortunately for deaf people, and people with disabilities, I have not been the only person lying to myself. These days it is not common for people to express their fears about deaf people or people with disabilities. People just press on without fully communicating or understanding the other person’s attitude or perspectives. When things then do not work out, these failures reinforce the misconceptions and these attitudes persist. I believe it is one of the main reasons why true community inclusion for deaf and people with disabilities is moving so slowly. Paying for access is another manifestation of this. Everyone is supportive of access in principle but there is continuous complaint about paying for things such as interpreting. The never-ending discussions between deaf people and the wealthy movie industry about providing more than token access to captioned cinema demonstrate that the inclusion lie is alive and well. Until it can be effectively addressed through genuine dialogue, deaf people, hard of hearing people and people with disabilities will always be largely relegated to life outside the mainstream. Collectively we will also continue to have to endure this double message that we are of equal value to the community while simultaneously being considered a financial burden if we try to access it in ways that are meaningful to us. Becoming Deaf In 2002 however all this thinking still lay ahead of me. I still had some hearing and was back living in New Zealand to be close to my family. My relationship had ended and I was a solo mother. My workplace had approved leave of absence, and so I still had my job to go back to in Melbourne if I wanted it. However, I suspected that I would soon need the second tumour removed because I was getting shooting pains down my face. When my fears were confirmed I could not decide whether to move back to Melbourne or let the job go, and risk having trouble finding one if I went back later. I initially chose to stay longer as my father was sick but eventually I decided Melbourne was where I wanted to be especially if I was deaf. I returned, found temporary employment, and right up to the second surgery I was able to work as I could make good use of the small amount of hearing I still had. I thought that I would still be able to cope when I was made fully deaf as a result of the surgery. It was, after all, only one notch down on the audiogram and I was already ‘profoundly deaf’ and still working. When I woke up after the surgery completely deaf, it felt anti-climactic. The world seemed exactly the same, just silent. At home where I was surrounded by my close family and friends everything initially seemed possible. However, when my family left, it was just my seven-year-old son and myself again, and on venturing back into the community, it quickly became clear to me that at some level my status had changed. Without any cues, I struggled to follow speech and few people wanted to write things down. Although my son was only seven, people communicated with him in preference to me. I felt as if we had changed roles: I was now the child and he was the adult. Worse was soon to follow when I tried to re-enter the workforce. When I had the surgery, the hospital had installed a gadget called an auditory brainstem implant, (ABI) which they said would help me hear. An ABI is similar to a cochlear implant but it is attached to the brainstem instead of the cochlear nerve. My cochlear nerve was removed. I hoped my ABI would enable me to hear enough to find work but, aside from clinical conditions in which there was no background noise and the staff knew how to assist, it did not work. My most humiliating moment with it came when it broke down mid job interview and I spent half the time left trying to get it going again in full view of the embarrassed interview panel, and the other half trying to maintain my composure whilst trying to lip-read the questions. The most crushing blow came from the library where I had happily worked for seven years at middle management level. This library was collaborating with another institution to set up a new library and they needed new staff. I hopefully applied for a job at the same level I had worked at prior to becoming deaf but was unsuccessful. When I asked for feedback, I was told that I was not seen as having the skills to work at that level. My lowest point came when I was refused a job unpacking boxes of books. I was told I did not have experience in this area even though, as any librarian will attest, unpacking boxes is part of any librarian’s work. When I could not find unskilled work, it occurred to me that possibly I would never work again. While this was unfolding, my young son and I went from being comfortable financially to impoverished. My ex-partner also decided he would now make childcare arrangements directly with my son as he was annoyed at being expected to write things down for me. My relationship with him, some family members, and my friends were all under strain at that time. I was lost. It also became clear that my son was not coping. Although he knew the rudiments of Auslan, it was not enough for us to communicate sufficiently. His behaviour at school deteriorated and one night he became so frustrated trying to talk to me that he started to pull out his own hair. I calmed him and asked him to write down for me what he was feeling and he wrote down ‘It is like you died. It is like I don’t have a Mum now’. It was now clear to me that although I still had my friends, nobody including myself knew what to do. I realised I had to find someone who could understand my situation and I knew now it had to be a Deaf person. Fortunately, by this stage I was back learning Auslan again at La Trobe University. The week after the conversation with my son, I told my Auslan teacher what had happened. To my relief she understood my situation immediately. She told me to bring my son to class, at no cost, and she would teach him herself. I did and my life started to turn around. My son took to Auslan with such speed and application that he was able to not only converse with her in one month but immediately started using Auslan with me at home to get the things he wanted. We were able to re-establish the mother/son relationship that we both needed. I was also able to help my son talk through and deal with all the changes that me becoming deaf had foisted upon him. He still uses Auslan to talk to me and supplements it using speech, copious finger spelling, notes and diagrams. More than anything else, this relationship has kept me anchored to my long-term goal of becoming a clear signer. Encouraged by my son’s success, I put all my energy into learning Auslan and enrolled in a full time TAFE Auslan course. I also joined a chat group called ‘Here to Hear’ (H2H). The perspectives in the group ranged from strongly oral to strongly Deaf but for me, trying to find a place to fit in any of it, it was invaluable. Almost daily I chatted with the group, asking questions and invariably someone responded. The group acted as a safety net and sounding board for me as I worked out the practicalities of living life deaf. The day of my fateful interview and the ABI humiliation, I came home so shaken that I used the Irish remedy of a couple of swigs of whisky, and then went online and posted an account of it all. I can still remember the collective indignation of the group and, as I read the responses, beginning to see the funny side of it . . . something I could not have done alone. I also made use of easy access to Deaf teachers at TAFE and used that to listen to them and ask advice on situations. I found out for example, that if I instructed my son to stand behind me when people in shops insisted on addressing him, they had no alternative but to talk to me; it was a good clear message to all concerned that my son was the child in this relationship. About this time, I discovered the Disability Discrimination Act (DDA) that Elizabeth Hastings had worked so hard on, filed my first DDA complaint, and received my first apology at the mediation session that followed. My personal life also improved, relationship by relationship as everyone adjusted. Slowly the ice melted in most of my relationships; some relationships faded and were replaced with new ones with signing people, and eventually hearing people again. My life moved forward. Through a member of ‘Here to Hear’, I was invited to apply for my first post deaf job—covering holiday leave at a Deaf sports organisation. I practically finger-spelt my way through the interview but not only did they offer me the job, they were delighted to have me. I was able to buy a few things with the money I earned, and suddenly it felt as if everything was possible again. This acceptance of me by Deaf people had a profound impact on me. I mixed with people more, and it was not too long before I was able to use my basic signing skills to use Auslan interpreters and re-enter the workplace. I have discovered over time that living in silence also has advantages—no more noisy parties or rubbish trucks clanging at dawn and in its place a vastly heightened visual awareness that I enjoy. Before I was deaf I thought it would be lonely in the silence but in fact many of life’s best moments—watching rain hit and then run down a window, swimming in the sea, cooking and being with good friends—do not rely upon sound at all; they feel the same way they always did. Sometimes I have felt somewhat of an outsider in the Deaf community. I have sometimes been taken aback by people’s abruptness but I have learned over time that being succinct is valued in Auslan, and some people like to come straight to the point. At crisis points, such as when I asked for help at the Victorian Deaf Society and my Auslan class, it has been a huge relief to talk to Deaf people and know immediately that they understand just from reading their eyes. Having access to an additional world of deaf people has made my life more enjoyable. I feel privileged to be associated with the Deaf community. I can recall a couple of Christmases ago making dinner for some signing friends and suddenly realising that, without noticing, everything had become alright in my world again. Everyone was signing really fast – something I still struggle with; but every now and then someone would stop and summarise so I felt included. It was really relaxed and simply felt like old times, just old times without the sound thrown in. Le Page and Tabouret-Keller, two ethnographers, have this to say about why people communicate the ways they do: The individual ... creates for himself the patterns of his linguistic behaviour so as to resemble those of the group or groups with which from time to time he wishes to be identified, or so as to be unlike those from whom he wishes to be distinguished ... . We see speech acts as acts of projection; the speaker is projecting his inner universe, implicitly with the invitation to others to share it ... he is seeking to reinforce his models of the world, and hopes for solidarity from those with whom he wishes to identify. (181) This quote neatly sums up why I choose to communicate the ways I do. I use Auslan and speech in different situations because I am connected to people in both groups and I want them in my life. I do not feel hugely different from anyone these days. If it is accepted that I have as much to contribute to the community as anyone else, becoming deaf has also meant for me that I expect to see other people treated well and accepted. For me that means contributing my time and thoughts, and advocating. It also means expecting a good level of access to interpreters, to some thought provoking captioned movies in English, and affordable assistive technologies so I can participate. I see this right to participate and engage in genuine dialogue with the rest of the community as central to the aspirations and identity of us all, regardless of who we are or where others think we belong. References Le Page, R.B., and Andree Tabouret-Keller. Acts of Identity: Creole-Based Approaches to Language and Ethnicity. London: Cambridge University Press, 1985. Moorhead, D. “Knowing Who I Am.” In S. Gregory, ed., Deaf Futures Revisited. Block 3, Unit 10, D251 Issues in Deafness. Open University, 1995.