Journal articles: 'Written emotional discolsure, pain' – Grafiati (2024)

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Abstract Objective Although functional abdominal pain (FAP) is one of the most common pain problems in children, there is a lack of qualitative studies on this topic. Our aim was to increase knowledge in this field by testing an innovative written narrative methodology designed to approach the experiences of children with FAP and their parents. Methods We analyzed the FAP experiences of 39 families who completed a written narrative task (children and parents separately). Some of the families (N = 20) had previously completed an online psychosocial intervention, whereas others had not, because a complementary objective was to explore possible differences between parent and child narratives, and between those who had and had not completed the intervention. Results Families wrote about abdominal pain (characteristics, triggers, pain consequences, and coping strategies), their well-being, the diagnostic process, future expectations, and the positive effects of an online psychosocial intervention. Children tended to mention pain characteristics more, whereas parents tended to write more about triggers and the diagnostic process. Conclusions A written narrative methodology was found to be a useful approach for understanding families’ experiences. Results confirmed that FAP affects families at the emotional, behavioral, and social levels and that an online psychosocial intervention can help families.

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IntroductionHaemophilia is a bleeding disorder associated with significant pain, emotional distress, quality of life (QoL) impairment and considerable healthcare costs. Psychosocial health and effective pain management are considered essential end points for optimal haemophilia care, but there is a significant gap in evidence-based treatments targeting these outcomes in people with haemophilia (PWH). Psychological interventions are cost-effective in promoting emotional well-being, QoL and pain control, although these have been scarcely used in haemophilia field. This investigation aims to evaluate the effectiveness of two psychological interventions for pain management, emotional regulation and promotion of QoL in PWH.Methods and analysisThis is a single-centre parallel randomised controlled trial conducted at a European Haemophilia Comprehensive Care Centre in Portugal, with five assessment points: baseline (T0), postintervention (T1), 3 (T2), 6 (T3) and 12 (T4) months follow-up. Eligible adult males, with moderate or severe haemophilia A or B will be randomised to experimental (EG) or control (CG) group. Intervention is either cognitive-behavioural therapy (EG1) or hypnosis (EG2), both consisting of four weekly sessions following standardised scripts delivered by trained psychologists. Randomisation will be computer generated, allocation concealment will be guaranteed and outcome assessors will be blind to EG/CG allocation. Main outcomes are pain and haemophilia-related QoL and secondary outcomes include clinical (clotting factor replacement consumption, joint bleeding episodes, analgesic intake) and psychological (pain coping strategies, anxiety, depression, illness perceptions) variables, functional assessment of the joints, inflammatory biomarkers (cytokines, high-sensitivity C reactive protein) and white blood cell count.Ethics and disseminationThis study was approved by the competent authorities and all procedures will comply with international ethical guidelines for clinical studies involving humans. Written informed consent will be obtained from all participants. The dissemination plan includes peer-reviewed scientific publications, conference participation and web and media coverage.Trial registration numberNCT02870452.

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Writing (prosaic, non-fictional and (auto)biographical) and photography (as aesthetics and technology, language, material object and practice) can communicate and interrelate in the narration and depiction of physical disorders. The five articles in this Special Issue explore how the body and its pain and disorders can be accessed in projects that either interlace words and images within themselves or that communicate and interrelate with other written or visual texts produced by others. In these photo-textual encounters (or clashes), wounded, tormented, weakened bodies are narrated and mediated, as well as marked, modified and exposed by personal and emotional choices or by ideological and socio-historical circumstances. The articles invite us to reflect on the ideological discourses, issues of power, practice, ethics and agency that any illness implicates, as well as the flexible boundaries of the written and visual language narrating such an overpowering experience.

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Objective: To determine whether patients have better outcomes when exercise instructions are provided using multimedia approaches compared with verbal or written instructions. Data sources: Electronic databases (MEDLINE, EMBASE, CINAHL, and PsychInfo) searched up to October 2018. Study selection: Randomized controlled trials exploring exercise-based interventions for health conditions, and comparing instructions provided using multimedia approaches with conventional verbal or written instructions. Results: Fourteen trials from seven countries were included, with a total of 2156 participants. Diagnoses included orthopaedic, neurological, pulmonary, cardiac, and women’s health conditions. A meta-analysis of three trials (140 participants) provided very low-quality evidence that multimedia exercise instructions may be more effective than written instructions in improving exercise adherence (standardized mean difference (SMD) 0.60, 95% confidence interval (CI) –0.06 to 1.25). Two of nine trials that could not be included in the meta-analysis for adherence due to heterogeneity reported that multimedia exercise instructions were more effective than written instructions in improving exercise adherence. Four other meta-analyses (three trials each) found low- to high-quality evidence that provision of exercise instructions using multimedia is no more beneficial than paper-based instructions for patient-related outcomes of pain intensity (SMD 0.09, 95% CI –0.47 to 0.28); uptake of physical activity (SMD 0.07, 95% CI −0.08 to 0.23); or physical (SMD 0.21, –0.21 to 0.64) or emotional (SMD 0.16, 95% CI −0.04 to 0.36) domains of health-related quality of life. Conclusion: Multimedia approaches to exercise instruction may result in increased adherence compared with instructions provided in written or verbal format, but there is insufficient evidence to determine whether this results in improved patient outcomes.

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OBJECTIVES: Inguinal hernias are the most commonly presented abdominal hernias with approximately 20 million people operated annually throughout the world. Severe chronic pain after hernia repair effects social life, daily activity and overall quality of life. The Short Form-36 is (SF-36) a validated indicator of overall health status. Studies have shown that the reliability of the SF-36 is exceeding 0.80. This study aims to determine the severity of pain and quality of life after open inguinal hernia repair at a tertiary care hospital using SF-36. METHODS This cross-sectional study was carried out at Indus Hospital Karachi from 1st April 2018 to 10th September 2018.88 Patients were enrolled in this study according to the inclusion and exclusion criteria. A written and informed consent was taken from all of them. After surgery they were sent home on painkillers. They were called at 4 weeks and were required to fill a pre designed questionnaire Short form -36. RESULTS Results showed that out of the 88 patients enrolled in this study 35 (39.8%) experienced mild pain, 37(42%) experience moderate pain and only 16 (18.2%) experienced severe pain. Quality of life was satisfactory in 72(81%) and unsatisfactory in 13(14.7%). CONCLUSION: Hence it is concluded that post operatively patients experienced better physical functioning and emotional role functioning whereas their perceptions about their general health and energy were satisfactory. Hernia surgery should be offered to all the patients with a clinically detectable hernia.

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The relationship between pain as a physical and emotional experience and the concept of suffering as an essential aspect of sanctification for faithful believers was a paradoxical and pressing theological and phenomenological issue for puritan and non-conformist communities in 17th-century England. Pain allows the paradox of non-conformists’ valorisation and suppression of corporeality to be explored due to its simultaneous impact on the mind and body and its tendency to leak across boundaries separating an individual believer from other members of their family or faith community. The material world and the human body were celebrated as theatres for the display of God’s glory through the doctrines of creation and providence despite the fall. Pain as a concept and experience captures this tension as it was represented and communicated in a range of literary genres written by and about puritan and non-conformist women including manuscript letters, spiritual journals, biographies and commonplace books. For such women, targeted by state authorities for transgressing gender norms and the religion established by law, making sense of the pain they experienced was both a personal devotional duty and a political act. Three case studies comprise a microhistory of 17th-century English puritan and non-conformist women’s lived experience, interpretation and representation of pain, inscribed in a series of manuscripts designed to nurture the spiritual and political activism of their communities. This microhistory contributes to a better understanding of pain in early modern England through its excavation of the connections that such writers drew between the imperative to be visibly godly, their marginalised subject position as a proscribed religious minority and their interpretation of the pain they experienced as a result.

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Ben Rich, J.D., Ph.D., presents a scholarly, passionate view of the ethics of the “barriers to effective pain management.” His manuscript is detailed, analytical, and compassionate. No reasonable sensitive person, especially a physician committed to caring for patients, can disagree with the proposal that human beings should have their physical, emotional, and spiritual pain tended to aggressively, meticulously, and compassionately. Similarly, the same individuals advocating for such pain management would agree that no one should go to jail unless he or she is guilty of a serious crime, that decent people should not be robbed or murdered, that children should not be hungry or homeless, and that all citizens of the United States deserve healthcare. Our society attempts to achieve these goals. Laws are written, discussed, and approved by state and federal congresses, voted on by citizens, and theoretically upheld by the courts, churches, and decent individuals. But, unless the world suddenly becomes inhabited by virtuous, ethical humans who can unfailingly differentiate “good” from “bad,” then, in spite of an abundance of laws and lawyers, doctors, and nurses, this world will continue to have pain and suffering. And, although we want to hold our doctors, politicians, educators, champion athletes, and others to “higher standards” than the average citizen, it is best to remind ourselves frequently that all humans can be weak and are bound to make imprecise judgments, that there is not a homogenous definition of “good,” that values and religious beliefs are variable.

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Background: Caring for dying children presents special challenges, according to the children themselves, their relatives and healthcare professionals. Objective: The aim of this study was to describe caring as represented in healthcare workers’ experiences of caring for dying children. Method: A phenomenological approach was chosen, in-depth interviews were carried out and data were analysed in four steps focusing on (a) open reading, (b) meaning units, (c) constituents and (d) essence. Ethical considerations: Four nurses in a general acute paediatric care setting in Sweden participated after providing written informed consent. Voluntary participation and confidentiality were ensured, and the study was ethically approved. Findings: The essence of caring for dying children was likened to a musically attuned composition, comprising five constituents: presence, self-knowledge, injustice in dying, own suffering and in need of others. Presence was found to be a prerequisite for caring when a child is dying. Self-knowledge and support from others can be of help when struggling with emotional pain and injustice. Discussion: Caring for dying children has been found to be a delicate task for healthcare workers all over the world, and the ethical dimension is emphasized in international research. In this study, emotional pain and suffering accompanied caring, but an atmosphere in which it is possible to give and get support from colleagues and to have time to grieve and time to focus on the patient’s needs may ease the burden, as can having time to process thoughts about life and death, and a possibility to grow in self-knowledge. Conclusion: Caring in ethically demanding situations may be facilitated through presence, atmosphere, self-knowledge and time. The challenge does not demand highly technological solutions; these assets are readily available, no matter where on earth. However, there is a need to further investigate these prerequisites for caring, particularly when a child is dying.

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Background: Anterior knee pain (AKP) is a common knee injury resulting from overuse, and impact negatively on the quality of life of many runners. Runners with AKP in under- resourced poor communities present with poor health outcomes. Aim: To determine the experiences and rehabilitation needs of runners in under-resourced communities in Ekurhuleni, South Africa. Methods: The study was qualitative, based on the focus group interview method. Interviews were conducted with 12 runners. They were aged from 18 to 45 years and had a history of AKP. Permission was obtained from club managers and consent from each participant. An interview schedule with predetermined questions was used to collect the data. Two researchers conducted the interview, a facilitator and moderator. The interview session lasted for 80 minutes. Audio recordings of the interview session were made, transcribed verbatim and notes taken, with the final result provided in a written report. The data approach was thematic and deductive in nature. Results: All 12 recruited participants participated. The participants were comprised of six females and six males, eight youths and four adults; seven had ≤5 years of running experience and five had 10 years. The following themes and subthemes emerged: 1) The negative impact of AKP on health (physical, emotional and social); 2) Limited rehabilitation services (availability, accessibility, affordability, adequacy and appropriateness); 3) Rehabilitation needs (knowledge and professional intervention). Conclusion: The study showed the negative impact of AKP on health and the problem of the paucity of rehabilitation services. A community based rehabilitation programme is therefore recommended for runners.

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The reflection of the homeland, the Lithuanian nation, the native land is very important in Antanas Vaičiulaitis’ creative work and personal correspondence. Letters, written 1924–1992 reveal a creative being, closely related to the formation of the image of Lithuania, its embodiment and the preservation of the memory of the motherland. The image of the homeland is often conveyed by the symbolism of a lost paradise, accompanied by the feelings of a tragic denouement. The construct of homeland as a paradise began to emerge in the writer’s early childhood, in letters it is portrayed as a mythical Eden. Through the mother, the space of home and the nature surrounding it, the metaphor of the motherland-fortress was formed. By comparing the homeland with his beloved mother, Antanas Vaičiulaitis conveyed the great pain, caused by the Lithuanian occupation. The letters’ image of homeland-paradise is associated with the ideals of patriotism, holiness of childhood and family, faith and also motives of loss and return, conveyed by the symbols of the tree and the bird. In the writer’s correspondence, through the personal context, complex emotional states reveal the cultural memory of the nation.

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This article investigates how philosophical and ethical reflections, rhetorical strategies, and emotional practices intersect. In the first section, it lays out the traditional emotion knowledge found in Persian and Indo-Persian texts on moral philosophy written in the Aristotelian tradition, which still held an important place in the education of people writing in and reading journals like Aligarh’s Tahzību-l Akhlāq. The second section looks at the transformation of this knowledge in the late nineteenth and early twentieth centuries and provides a close reading of texts that address education and self-education issues while simultaneously exhorting readers to feel more compassionate (and often to prove their compassion through specific actions). The last section, finally, uses the Punjabi traders of Delhi as a case study to show how practices of philanthropy contributed to community building. Compassion, the article argues, is a social emotion, but not necessarily an unequivocally benign emotion. It serves to construct a community and to negotiate its boundaries, but it is also a tool of exclusion and helps fortifying the communities’ internal hierarchies. The perception of the pain of others is as unequally distributed as the practices for its alleviation.

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Background: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. Aim: The study aimed at identifying key components of paediatric advance care planning through direct discussions with all involved parties. Design: The study had a qualitative design with a participatory approach. Participants constituted an advisory board and took part in two transdisciplinary workshops. Data were collected in discussion and dialogue groups and analysed using content analysis. Setting/participants: We included bereaved parents, health care providers and stakeholders of care networks. Results: Key elements were discussions, documentation, implementation, timing and participation of children and adolescents. Parents engage in discussions with facilitators and persons of trust to reach a decision. Documentation constitutes the focus of professionals, who endorse brief recommendations for procedures in case of emergencies, supplemented by larger advance directives. Implementation hindrances include emotional barriers of stakeholders, disagreements between parents and professionals and difficulties with emergency services. Discussion timing should take into account parental readiness. The intervention should be repeated at regular intervals, considering emerging needs and increasing awareness of families over time. Involving children and adolescents in advance care planning remains a challenge. Conclusion: A paediatric advance care planning intervention should take into account potential pitfalls and barriers including issues related to timing, potential conflicts between parents and professionals, ambiguity towards written advance directives, the role of non-medical carers for paediatric advance care planning implementation, the need to involve the child and the necessity of an iterative process.

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Background: The active involvement of patients and the public in the design and conduct of research (Patient and Public Involvement) is important to add relevance and context. There are particular considerations for involving children and young people in research in potentially sensitive and emotional subject areas such as palliative care. Aim: To evaluate the experiences of young people of Patient and Public Involvement for a paediatric palliative care research study. Design: Anonymous written feedback was collected from group members about their experiences of Patient and Public Involvement in a paediatric palliative care research study. An inductive thematic analysis of the feedback was conducted using NVivo. Setting / Participants: Young people aged 12–22 years who were members of existing advisory groups at a children’s hospital, hospice and the clinical research network in the West Midlands, UK. Results: Feedback was provided by 30 young people at three meetings, held between December 2016 and February 2017. Three themes emerged: (1) Involvement: Young people have a desire to be involved in palliative care research, and recognise the importance of the subject area. (2) Impact: Researchers should demonstrate the impact of the involvement work on the research, by regularly providing feedback. (3) Learning: Opportunities to learn both about the topic and about research more widely were valued. Conclusions: Young people want to be involved in palliative care research, and recognise its importance. A continuous relationship with the researcher throughout the study, with clear demonstration of the impact that their input has on the research plans, are important.

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ABSTRACTObjective:Little is known about the subjective experience of surrogates who authorize do not resuscitate (DNR) orders. This experience seems especially acute in settings such as New York State, where patients and surrogates generally give written consent for DNR orders. The goal of this study is to investigate the subjective and emotional experience of surrogates who authorize DNR orders in this setting.Methods:A qualitative, phenomenological research design was used. Surrogates of patients on the medical service were approached no earlier than 1 day and no later than 7 days after authorizing a DNR order. The interview guide was open-ended and included general prompts. Interviews were taped and transcribed. Researchers then coded the transcripts and examined the data for clusters of themes. They then met to discuss and recode disagreements.Results:Saturation was met after 10 subjects were interviewed. The following major surrogate themes were found: (1) Signing a DNR order is a process, not an isolated act. (2) The presence or absence of good quality communication and psychological support from health care personnel are among the most important factors in this process. (3) The process of signing a DNR order can raise many negative emotions including guilt, ambivalence, and conflict. (4) Prior discussions, documents such as living wills, and consensus among family members make it easier to determine the patient's wishes and carry them out by signing the DNR. (5) The surrogates believed that signing a DNR order is a prerequisite to obtaining adequate opioid analgesia.Significance of results:The experience of authorizing a DNR order is a complex and emotional decision-making process. Evidence of the patient's prior wishes and support from health care personnel make the process easier. It is disconcerting that surrogates viewed DNR orders as a prerequisite to obtaining relief for a patient's pain or suffering.

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Background: Recently, genicular nerve block and radiofrequency ablation were introduced to alleviate knee pain in patients with chronic knee osteoarthritis. Both ultrasound- and fluoroscopyguided genicular nerve blocks have been used. However, whether one is superior to the other remains unknown. Objectives: The present study compares the efficacy of ultrasound- vs fluoroscopy-guided genicular nerve blocks. Study Design: This research used a prospective randomized comparison design. Setting: The study took place at a single pain clinic within a tertiary medical center in Seoul, Republic of Korea. Methods: From July 2015 to September 2017, a randomized controlled study was performed to analyze the difference in the efficacy of ultrasound- vs fluoroscopy-guided genicular nerve blocks. The Numeric Rating Scale (NRS-11), Western Ontario and McMaster Universities Arthritis Index (WOMAC), Global Perceived Effect Scales (GPES), and complications were evaluated preprocedure, and 1 and 3 months after genicular nerve block. Results: A total of 80 patients were enrolled and randomly distributed to groups U (ultrasoundguided, n = 40) and F (fluoroscopy-guided, n = 40). Those who were lost to follow-up or had undergone other interventions were excluded, resulting in 31 and 30 patients in groups U and F, respectively. No differences in NRS-11 or WOMAC were observed between the 2 groups at baseline or during the follow-up period. GPES and complication rates were also similar between both groups. Limitations: We were unable to perform double-blind randomization and did not evaluate patients’ baseline emotional states. Conclusions: Pain relief, functional improvement, and safety were similar between groups receiving ultrasound- and fluoroscopy-guided genicular nerve blocks. Therefore, either of the 2 imaging devices may be utilized during a genicular nerve block for chronic knee pain relief. However, considering radiation exposure, ultrasound guidance may be superior to fluoroscopic guidance. The study protocol was approved by our institutional review board (2015-0369), and written informed consent was obtained from all patients. The trial was registered with the Clinical Research Information Service (KCT 0002846). This work was presented in part as D-H Kim’s MS thesis at the University of Ulsan College of Medicine (2018). Key words: Genicular nerve block, ultrasound, fluoroscopy, knee osteoarthritis, Numeric Rating Scale, The Western Ontario and McMaster Universities Osteoarthritis Index

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86 Background: Patient-provider communication about survivorship care and care plans is a core tenet of quality cancer care. Our objective was to examine gaps in communication about maintaining health, importance of follow-up care, and unmet information needs in community-based survivors. Methods: A convenience sample of adult survivors attending a community-based cancer survivorship conference were eligible to take this survey. Consenting adult survivors completed a self-administered survey with selected questions from the NCI Follow-Up Care Use among Survivors Survey. Participants were informed that survey completion was voluntary and confidential. Descriptive statistics were used to summarize and analyze data. Results: 284 surveys were distributed and 169 surveys returned, resulting in a response rate of 59.5%. After excluding Spanish-language surveys and respondents not diagnosed with cancer, 109 surveys were included in this sub-analysis. Most survivors were female (77.7%), college-educated (86.1%), married (58.4%) and diagnosed with breast cancer (47.5%). Over half (55.5%) reported experiencing pain that interfered with their daily routine yet, 83.2% reported being in good to excellent health. The primary reason for receiving follow-up care was to check for recurrence (66.2%). Most survivors (78.5%) reported having no to some patient-provider discussions about the late effects associated their treatment. 47.6% reported not receiving information about a written care summary from their provider, 94.8% would have liked to have received a written summary, and 73.1% preferred more information about the benefits of a personalized care plan. Survivors also reported in the past 2 years, their providers did not discuss topics related to emotional concerns (35.3%), alcohol consumption (35.1%) and types of foods to eat (33.8%). Survivors wanted more information on self-management techniques such as how to improve energy (83.2%), manage fatigue (72.9%), or improve sleep (69.3%) Conclusions: Our findings highlight the need for further examination on the impact of inadequate patient-provider communication on survivors’ outcomes and providers’ practice.

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Emotional restraint was the norm for the bereaved during and after the Second World War. Displays of individual grief were discouraged, and overshadowed by a wider concern for mass bereavement. There is limited archival evidence of the suffering that fathers of sons killed in action endured. This article draws upon and analyses a powerful memoir written by my grandfather, lamenting the death of his only son killed in action near the end of the War. While most men contained their emotions in such circumstances, this extended lament expresses a range of deep feelings: Love and care for the departed son, tenderness towards other family members, guilt at sending his son away to boarding school, loss of faith in (Christian) religion, and a sense of worthlessness and personal failure. Of particular interest is the impact of geographical distance over which this narrative is played out, and what it reveals about the experience of one white British middle-class family living overseas, but strongly interconnected with ‘home’ (and specifically Scotland). It also documents the pain of prolonged absence as a result of war; often boys sent ‘home’ to board were separated from their parents for much of their childhood, and were forced to ‘become men’—but not as their parents had envisaged. The article concludes by exploring the implications of this private memoir and what it reveals about memoir, masculinity, and subjectivity; gender and grieving; connections with ‘home’; and constructing meaning after trauma.

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Background: Recently, several studies suggested that radiofrequency (RF) ablation of the genicular nerves is a safe and effective therapeutic procedure for intractable pain associated with chronic knee osteoarthritis (OA). Diagnostic genicular nerve block (GNB) with local anesthetic has been generally conducted before making decisions regarding RF ablation. Although GNB has been recently performed together with corticosteroid, the analgesic effects of corticosteroids for treating chronic pain remain controversial. Objectives: The current study aims to assess the effects of combining corticosteroids and local anesthesia during ultrasound-guided GNB in patients with chronic knee OA. Study Design: A randomized, double-blinded institutional study. Setting: This study took place at Asan Medical Center in Seoul, Korea. Methods: Forty-eight patients with chronic knee OA were randomly assigned to either the lidocaine alone group (n = 24) or lidocaine plus triamcinolone (TA) group (n = 24) before ultrasound-guided GNB. Visual analog scale (VAS), Oxford Knee Score (OKS), and global perceived effects (7-point scale) were assessed at baseline and at 1, 2, 4, and 8 weeks after the procedure. Results: The VAS scores were significantly lower in the lidocaine plus TA group than in the lidocaine alone group at both 2 (P < 0.001) and 4 (P < 0.001) weeks after GNB. The alleviation of intense pain in the lidocaine plus TA group was sustained up to 2 weeks after the procedure, in accordance with the definition of a minimal clinically important improvement. Although a similar intergroup difference in OKSs was observed at 4 weeks (P < 0.001), the clinical improvement in functional capacity lasted for only one week after the reassessment of OKSs, in accordance with a minimal important change. No patient reported any postprocedural adverse events during the follow-up period. Limitations: The emotional state of the patients, which might affect the perception of knee pain, was not evaluated. The follow-up period was 2 months; this period might be insufficient to validate the short-term effects of GNB. Conclusions: Ultrasound-guided GNB, when combined with a local anesthetic and corticosteroid, can provide short-term pain relief. However, the clinical benefit of corticosteroid administration was not clear in comparison with local anesthesia alone. Given the potential adverse effects, corticosteroids might not be appropriate as adjuvants during a GNB for chronic knee OA. The study protocol was approved by our institutional review board (2012-0210), and written informed consent was obtained from all patients. The trial was registered with the Clinical Research Information Service (KCT 0001139). Key words: Chronic pain, knee osteoarthritis, genicular nerve block, ultrasound, corticosteroid, local anesthetic, visual analog scale, Oxford Knee Score

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The torments of the colossal human tragedy of the partition of India and its aftermath are still being borne by the people of India in some way or the other. The fissured social and emotional spirit of the people is still not healed. The horrific scenes of partition still haunt the psyche of the Indians. Millions were massacred and those that were alive were like live corpses moving around. Their sufferings are unfathomed. They not only suffered physically but also mentally and emotionally. Khushwant Singh’s Train to Pakistan is a novel that unfolds all aspects of suffering and pain which were endured by the people at that time. Singh has been successful in communicating to his readers the tribulations of the partition days, the harrowing experiences, grossness, the madness and the bestial horrors.The displacement of people from one country to another became the root cause of the whole holocaust. The village which bustled with activity turned into a kenopsia. Singh’s rankling at the idea of partition can be perceived in the novel. In the novel, Singh has vehemently written about every aspect of the dreaded violence to which women were subjected. It is quite obvious from the conditions prevailing in India that this splitting of the country was a futile effort. It sowed the seeds of communal discord permanently. People are still suffering they have not fully recovered from this psychosomatic trauma. The seeds of harmful weeds that were sown by the partition are still being reaped by the Indians.

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Introduction: The International Headache Society criteria were written in order to help physicians establish a headache diagnosis. However, sometimes children with headache do not seem to fit any diagnosis. The purpose of our study was to assess the application of the criteria in a clinical setting. Methods: Medical records of children referred for primary headache to the pediatric neurology clinic at Bnai Zion Medical Center from 2008 to 2017 were assessed. Results: A total of 989 patients (range 6-18 years; 53% female) were assessed at our neurology clinic. Twenty-four percent (n = 241) were diagnosed with tension-type headache, 26% (n = 256) with migraine, and 4.5% (45) with mixed headache. In 41.5% (410), we were unable to reach a specific diagnosis. No differences in gender or age were found between the groups. Children in the migraine group used more analgesic treatments to stop the headache attacks compared with the tension-type headache group (50% vs 38%, P = .001). Patients diagnosed with tension-type headache reported having more emotional difficulties ( P = .001). No significant differences were found in headache characteristics (ie, location, sidedness, character), frequency, or intensity between the younger children (ages 6-11) and the adolescents (ages 12-18) within either the tension-type headache or migraine groups. Conclusions: Retrospective application of International Headache Society criteria in a large cohort of children with headaches failed to diagnose a specific type of headache in 41.5% of children. Migraine and tension-type headache were equally prevalent, and both constituted a major burden on our patients’ everyday lives. We found no major differences in frequency, intensity, and characteristics of pain between younger children and adolescents.

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Sexual problems are found in four major forms: lack of libido, lack of arousal and potency, pain and discomfort during intercourse, and lack of orgasm. It is possible to work with a holistic approach to sexology in the clinic in order to find and repair the negative beliefs, repressions of love, and lack of purpose of life, which are the core to problems like arousal, potency, and pain with repression of gender and sexuality. It is important not to focus only on the gender and genitals in understanding the patient's sexual problems. It is of equal importance not to neglect the body, its parts, and the feelings and emotions connected to them. Shame, guilt, helplessness, fear, disgust, anger, hatred, and other strong feelings are almost always an important part of a sexual problem and these feelings are often “held” by the tissue of the pelvis and sexual organs. The patient with sexual problems can be helped both by healing existence in general and by discharging old painful emotions from the tissues. The later process of local healing is often facilitated by a simple technique: accepting contact via touch. This is a very simple technique, where the self-acceptance of the patient is to be promoted, for example, asking the female patient to put her hand on her stomach (uterus) or vulva, after which the holistic physician puts his hand supportively around hers. When done with care and after obtaining the necessary trust of the patient, this aspect of holding often releases the old negative emotions of shame bound to the touched areas. Afterwards, the emotional problems become a subject for conversational therapy and further holistic processing. Primary vulvodynia seems to be one of the diseases that can be cured after only a few successful sessions of working with acceptance through touch. The technique can be used as an isolated procedure or as a part of a pelvic examination. When touching the genitals with the intention of sexual healing, a written therapeutic contract with the patient is highly recommended and a strict ethical code is necessary to avoid malpractice. As about one woman in three suffers from sexual problems, many of which seemingly can be efficiently alleviated by the simple holistic techniques of “holding and processing”, it is very important that the holistic physician is also trained to work in the sexual sphere in order to be able to support his patients fully.

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In Ukrainian mythology as in world mythology, there is an idea of the possibility of a love relationship between a human and a demonic creature – a dead lover or a devil. Thus, F. Potushnyak’s article Dead Love in Folk Beliefs (1944) is devoted to this theme. Folk beliefs about demonic lovers precondition the relationship between them and a human, and methods of their overcoming are examined in this article. In the short story About, why the Peshevtsov pond was dried up in the town of Voronezh (1839) written by P. Kulish, we can find a very interesting interpretation of folk beliefs when a dead husband visits his wife. The writer modeled the tragic story of the woman, whose husband disappeared, with the help of folk mythological stories. And because of her deep regret, she became a victim of a demon who appeared in the image of her beloved husband. In the article, the psychological basis of the appearance of visions, in which the main figure is a dead object of love, is analyzed. Through the prism of Jung’s theory, the image of a dead lover is considered as a personification of one of the archetypes of the collective unconscious (Animus, its negative aspect). Destructive display of this image has the same psychological basis both in mythological legends and in P. Kulish’s short story About, why the Peshevtsov pond was dried up in the town of Voronezh. The woman’s consciousness refuses to take the reality as it is and creates an alternative variant for herself – the dead lover comes to her at night (when unconscious dominates – our wishes, fears, etc. are implemented in night dreams). The line between conscious and unconscious life is erased and the woman becomes a hostage of her own fantasy, which removes pain of loss and gives hope to renew the lost emotional and spiritual balance for a moment. Folk stories in the spirit of Christian morality contain “recipes” of fighting a dead lover. However, mostly these rituals cannot help the woman, who is obsessed with love to her dead lover as it happened in P. Kulish’s story.

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Obstetric problems that arise during urgent operational labour, perinatal consequences, psychological component, reproductive perspectives, cosmetology moments are the incomplete list of questions faced by a physician and a patient in case of an urgent caesarean section. The goal is to analyze clinical, perinatal results, psychological component of urgent operational labour by means of CS from the position of categories of urgency to optimize counseling the patients before an emergency surgery. The analysis of cases of abdominal birth of 1st , 2nd and 3rd categories of urgency during the first half of the year 2017 in the Department of Pregnancy Failure of the Lviv Regional Clinical Hospital has been carried out. 97 case histories of childbirth are presented and analyzed, and the labour has been carried out urgently. The age of women at labour ranged from 18 to 36 years. CS of the incomplete pregnancy was carried out in 59 (60.8%) cases and with 38 patients in the full-term pregnancy. Caesarean section of the first category of urgency was carried out with 44 patients (45.4%), the second one with 31 (31.9%), and the 3rd with 22 (22.7%). A retrospective analysis of childbirth histories in case of an urgent CS confirmed the already existing trends and problems of operative obstetrics, as well as showed some practical possibilities, and mostly, their lack in terms of patients being informed and counseled before the CS surgery. Consultation of a pregnant woman before surgery is carried out by an obstetrician-gynecologist, an anesthetist and a neonatologist. The patient gets acquainted with details and being informed gives a written consent to medical intervention by signing two documents for the obstetrician-gynecologist, one for an anesthetist, and this is the minimum package of medical documentation in terms of legal norms. It is also necessary to take into account the psychological state of a woman: awareness of a threatening condition for herself or the child; labour stress, pain, emotional stress, physical exhaustion. On such a ground the counseling of a pregnant woman should be concise, correct, confident, and rational. Thus, therefore, counseling the patients before the operation of the CS cannot be considered standard. The categories of urgency of medical interventions include a varied approach to a specific obstetric situation, the individual selection of information for the patient and her family, the optimal use of the time interval for preparation for the surgery and delivery of information.

Abstract:

Background/Aim. Multiple sclerosis (MS) is a chronic inflammatory disease of central nervous system. The main physiopatological feature of MS is demyelination. Multiple sclerosis is one of three most common causes of severe disability in youngest people. In patients with MS, apart from complete psychophysical status and objective neurologic status, a subjective perception of symptoms and signs, known as quality of life, must be considered, too. The aim of this study was to estimate a health related quality of life (HRQoL) in patients with multiple sclerosis (MS) and to investigate the correlations between scores of HRQoL and selected demographic and clinical parameters. Methods. A cross-sectional study was performed in patients meeting following inclusion criteria: MS diagnosis (McDonald's criteria), age 18-60 years, the Expanded Disability Status Scale (EDSS) < 8, and written informed consent. Exclusion criteria were exacerbation of MS in the last month, any preexisting major chronic illness and/or psychiatric disorders and antidepressive and/or corticosteroid therapy in the last month. The quality of life was measured by a disease specific instrument, MSQoL-54 (The Multiple Sclerosis Quality of Life). The neurological impairment was assessed using the Expended Disability Status Scale (EDSS) and Mini Mental Scale (MMS). The presence and severity of depression was estimated by the Hamilton Depression Rating Scale (HDRS). The presence and severity of fatigue was assessed by the Fatigue Severity Scale (FSS). Statistical analysis included descriptive statistics and correlation analysis. Results. The higher HRQoL score was registered for mental health (56.3 ? 19.5) than for physical one(51.3 ? 17.9), which means that physical disability had more important influence on quality of life deterioration comparing to mental health. The highest values of HRQoL were observed in domains of Cognitive Functioning (77.4 ? 22.5) and Pain (75.7 ? 25.5). The lowest scores of HRQoL were registered in domains of Role Limitations due to Physical Problems (32.5 ? 42.0) and Role Limitations due to Emotional Problems (44.6 ? 47.8). HRQoL scores statistically significantly correlated with natural history of MS, duration of diseases, employment and marriage status of participants. Deterioration in quality of life scores in the most of MSQoL-54 scales and subscales statistically significantly correlated with the presence and severity of physical disability, depression status and fatigue in patients with MS. Conclusion. This study showed that different demographic and clinical parameters had a major influence on HRQoL impairment in the sample of patients with MS.

Abstract:

BackgroundWriting therapy to improve physical or mental health can take many forms. The most researched model of therapeutic writing (TW) is unfacilitated, individual expressive writing (written emotional disclosure). Facilitated writing activities are less widely researched.Data sourcesDatabases, including MEDLINE, EMBASE, PsycINFO, Linguistics and Language Behaviour Abstracts, Allied and Complementary Medicine Database and Cumulative Index to Nursing and Allied Health Literature, were searched from inception to March 2013 (updated January 2015).Review methodsFour TW practitioners provided expert advice. Study procedures were conducted by one reviewer and checked by a second. Randomised controlled trials (RCTs) and non-randomised comparative studies were included. Quality was appraised using the Cochrane risk-of-bias tool. Unfacilitated and facilitated TW studies were analysed separately underInternational Classification of Diseases, Tenth Revision chapter headings. Meta-analyses were performed where possible using RevMan version 5.2.6 (RevMan 2012, The Cochrane Collaboration, The Nordic Cochrane Centre, Copenhagen, Denmark). Costs were estimated from a UK NHS perspective and three cost–consequence case studies were prepared. Realist synthesis followed Realist and Meta-narrative Evidence Synthesis: Evolving Standards guidelines.ObjectivesTo review the clinical effectiveness and cost-effectiveness of TW for people with long-term conditions (LTCs) compared with no writing, or other controls, reporting any relevant clinical outcomes. To conduct a realist synthesis to understand how TW might work, and for whom.ResultsFrom 14,658 unique citations, 284 full-text papers were reviewed and 64 studies (59 RCTs) were included in the final effectiveness reviews. Five studies examined facilitated TW; these were extremely heterogeneous with unclear or high risk of bias but suggested that facilitated TW interventions may be beneficial in individual LTCs. Unfacilitated expressive writing was examined in 59 studies of variable or unreported quality. Overall, there was very little or no evidence of any benefit reported in the following conditions (number of studies): human immunodeficiency virus (six); breast cancer (eight); gynaecological and genitourinary cancers (five); mental health (five); asthma (four); psoriasis (three); and chronic pain (four). In inflammatory arthropathies (six) there was a reduction in disease severity [n = 191, standardised mean difference (SMD) –0.61, 95% confidence interval (CI) –0.96 to –0.26] in the short term on meta-analysis of four studies. For all other LTCs there were either no data, or sparse data with no or inconsistent, evidence of benefit. Meta-analyses conducted acrossallof the LTCs provided no evidence that unfacilitated emotional writing had any effect on depression at short- (n = 1563, SMD –0.06, 95% CI –0.29 to 0.17, substantial heterogeneity) or long-term (n = 778, SMD –0.04 95% CI –0.18 to 0.10, little heterogeneity) follow-up, or on anxiety, physiological or biomarker-based outcomes. One study reported costs, no studies reported cost-effectiveness and 12 studies reported resource use; and meta-analysis suggested reduced medication use but no impact on health centre visits. Estimated costs of intervention were low, but there was insufficient evidence to judge cost-effectiveness. Realist synthesis findings suggested that facilitated TW is a complex intervention and group interaction contributes to the perception of benefit. It was unclear from the available data who might benefit most from facilitated TW.LimitationDifficulties with developing realist synthesis programme theory meant that mechanisms operating during TW remain obscure.ConclusionsOverall, there is little evidence to support the therapeutic effectiveness or cost-effectiveness of unfacilitated expressive writing interventions in people with LTCs. Further research focused on facilitated TW in people with LTCs could be informative.Study registrationThis study is registered as PROSPERO CRD42012003343.FundingThe National Institute for Health Research Health Technology Assessment programme.

Abstract:

Introduction: In chronic diseases such as diabetes and cancer, disease-related distress is known to impact disease management and health outcomes (Barry et al. J Health Psychol 2019). We sought to develop and validate an instrument to measure hemophilia-related distress (HRD). Methods: Using themes raised during qualitative interviews, questions were written to assess HRD. Questions were revised after review by clinicians and patient focus groups. The final formatted HRD instrument comprised 24 Likert scale questions (response level 0-5) plus a numerical rating of current distress on a 1-10 scale. The HRD total score is the sum of all domain scores and could range from 0-120 with lower scores indicating less HRD. Adults (≥18 years) with hemophilia receiving care at one of two hemophilia treatment centers were recruited to participate in the validation study. After informed consent, participants reported demographic and clinical information then completed the HRD instrument and questionnaires that measured characteristics similar to HRD including: the National Cancer Center Network (NCCN) Distress Thermometer, Kessler 6+ (K6), Patient Health Questionnaire (PHQ-9), Brief Pain Inventory (BPI), 5-level EuroQol-5D (EQ-5D-5L), Haem-A-Qol, Work Productivity and Activity Impairment Questionnaire plus Classroom Impairment (WPAI), and PROMIS-29. Analysis included factor analysis and assessment of internal consistency using Cronbach's α, construct validity using Pearson's correlation coefficient and discriminant validity by comparing subgroups of patients. A subset of participants electronically completed the HRD instrument a second time within 7 days of initial assessment. Test-retest reliability was assessed using an interclass correlation coefficient (ICC). Results: Among 130 enrolled participants, 126 completed the HRD instrument in a median time of 5.4 minutes (Q1;Q3 3.5;14.4) with overall HRD scores ranged from 2-83 (median=31.5). Subject characteristics are shown in table 1. Factor analysis of 1-5 domains was undertaken with final selection of a 4-domain instrument (RMSEA 0.057 [90% CI 0.041,0.072]; CFI 0.97). The 4 domains are (# of items, Cronbach's α): Hemophilia Management Concerns (7 items, 0.81); Financial Concerns (3 items, 0.81); Perceived Self-efficacy (3 items, 0.79); Daily Function Concerns (7 items, 0.85). Assessment of convergent validity (table 2) demonstrated a moderate correlation (&gt;0.60) of the HRD total score with the NCCN Distress Thermometer, Haem-A-Qol total Score, and PROMIS social role domain. The HRD 0-10 scale correlated well with NCCN Distress Thermometer, PHQ-9 score, EQ-5D Index score, Haem-A-Qol total score, PROMIS anxiety, depression, and pain interference domains. Domain 4 (Daily Function Concerns) was well correlated with Haem-A-Qol total score as well as physical health and view of self domains, WPAI total activity impairment, and PROMIS pain interference. The HRD total score and domains 1-4 were mild to moderately correlated with the K6 measure of general psychological distress (0.3-0.54, p&lt; 0.05). Distress was higher among those with less education than standard college or graduate degree (median score 36 vs. 23, p=0.018), not employed (median total score 42 vs 26, p=0.002), and disabled (median score 43 vs 30, p=0.010). The total score was not significantly different among those with severe hemophilia compared with non-severe disease. However, domain 1 (hemophilia management concerns) was higher among those with non-severe disease (median 9 vs 6, p=0.033). Test-retest reliability was assessed in 38 subjects. ICC values were 0.84 (95% CI 0.71-0.91) for the total score and 0.56 (95% CI, 0.30-0.75), 0.51 (95% CI 0.40-0.81), 0.67 (95% CI 0.45-0.81) and 0.72 (95% CI 0.53-0.85) for domains 1-4 respectively. Conclusions: The HRD instrument measures the subjective emotional state associated with chronic management of hemophilia. The instrument demonstrates good internal consistency, construct and discriminant validity, and retest-reliability with a low responder burden. Interestingly HRD was not greater among those with severe disease, which in combination with results from analysis of domain 1, may reflect greater unease and less mastery in managing their disease among adults with non-severe hemophilia. Future studies can explore how HRD is associated with disease management and outcomes and healthcare utilization. Disclosures Kempton: Novo Nordisk: Research Funding; Octapharma: Honoraria; Genentech: Honoraria; Spark Therapeutics: Honoraria. Buckner:Genentech: Consultancy; Spark Therapeutics: Consultancy; Shire: Consultancy; Kedrion: Consultancy; Pfizer: Consultancy; Novo Nordisk: Consultancy.

Abstract:

Background:ANCA-associated Vasculitis (AAV) is a rare, severe small vessel vasculitis that affects multiple organs with a high acute mortality risk. As every patient presents differently, diagnosis is often delayed. Although treatments exist, responses vary, and remission is often not achieved or sustained. From the time of initial diagnosis onwards, patients suffer from an impaired quality of life. Coping with pain, fatigue, ongoing symptoms and combating challenges becomes a complex task and patients may be challenged in how best to communicate these emotions with health care professionals. We aimed to develop an initiative with Art and Voice, that would seek to empower people living with AAV and their carers in feeling understood, seen and heard in a meaningful way. This would invite a collective understanding of ‘how people make sense of key life experiences and what it means to them’ by creating a common language to address poorly addressed issues.Objectives:This project aims to provide a voice to patients to express personal experiences and complexity of everyday living and empower people to feel in control of their own health through an online platform. It should also allow practitioners to gain new awareness about issues faced by their patients, to better understand the relationships between caring and curing, hearing and listening.Methods:We collaborated with 10 patient association groups representatives, 17 AAV patients and 9 of their carers across 7 European countries. A series of workshops were set up to discuss issues faced and aid the subsequent production of a range of materials designed to provide clear, comprehensive content that would help individuals cope with the physical and emotional impact of AAV from diagnosis to living with it. This work was supported by a digital artist who is a rheumatologist living with vasculitis.Results:The co-creation of patient information materials featuring real life patients was successful and led to the development of a creative initiative called SEE ME.HEAR ME with an online platformwww.myancavasculitis.com. This includes: (1) an awareness programme featuring artwork created by the digital artist and advised by the patients which captures the essence of AAV from the patients view (see Figure). (2) a series of first-hand patient and carer stories capturing their authentic voice on ‘what it is like to live with the disease’. (3) extensive written content designed to fill information gaps around AAV diagnosis, investigations and treatment and what to expect during clinical follow up. The platform supports patients in asking questions and seeking information while signposting them to their own healthcare professional for advice and their local country patient association for support.Table 1.Sensitivities and specificities of examinations in gout and calcium pyrophosphate deposition diseaseConclusion:People with AAV need support throughout life, the profound psychosocial influence from illness makes the lived experience, challenging. SEE ME. HEAR ME online patient platform aims to generate awareness around AAV, improve physician and patient dialog, and enhance people’s experiences of living and coping with the disease. In addition it provides support for carers and giving valuable insights to friends, family and the general public about what the lived experience with AAV looks like.Acknowledgments:We wish to thank all European patients and patient association leads who worked on this projectDisclosure of Interests:Shanali Perera Consultant of: Vifor Pharma, Dijana krafcsik Employee of: Vifor Pharma, Peter Rutherford Shareholder of: Vifor Pharma, Employee of: Vifor Pharma, Baxter Healthcare

Abstract:

Statement of the problem. There are a lot of works in the national musicology focusing on the study of vocal chamber music for voice and piano by Ukrainian composers of the 20th century. Researchers cover quite a wide range of issues regarding vocal pieces and touch upon the problems of cyclocreation, dramaturgy, features of musical and linguistic means, etc. However, they rarely pay attention to translation, though there are many vocal opuses, in which composers use foreign poetry. In this case, the specifi c choice of the translated sample helps to determine the principles of the composer’s approach to the embodiment of the poetic text, especially in comparison with other works based on the same sources. Hence separate songs from D. Klebanov’s vocal cycle on the poems of H. Heine did not become an exception, thereby confi rming the relevance of the proposed topic. The purpose of the article is to determine specifi c features of the embodiment of H. Heine’s poetry translations in the vocal cycle of D. Klebanov on the basis of two romances – “In a grove, on a wild path”, “My love, lay your hand on my heart”, as compared to the works of other composers of the twentieth century . To achieve the research objectives the following methods were used: historical, structural-functional, genre-style and comparative. Results. Under consideration are peculiarities of the embodiment of H. Heine’s poetry translations in the vocal cycle of D. Klebanov, one of the founders of Kharkiv composition school. For this work the author took eight verses from the fi rst two cycles of the “Book of Songs” by the German poet. They were based on the motives of love poems with vivid images of nature; sometimes the poems are full of sadness, a sense of loneliness. When D. Klebanov was choosing certain samples from different poetic cycles, he tried to stick to the plot of the “Book of Songs”, since he ordered the poems in the same way they were written in the collection. Another indicator of the composer’s relation to Heiner’s texts is the choice of poetic works which are given in the cycle in Ukrainian and Russian languages. The composer’s individual vision of Heine’s lyric poetry is clearly seen when compared to the vocal works of other composers of the twentieth century, M. Medtner and E. Denisov, written on the same poetic texts. In cross-romances, similar musical-linguistic means are used, including the metrical principle of vocalization of the poetic text, homophonic-harmonic structure, harmony of classical-romantic type. However, each of the composers renders the fi gurative and semantic implications of the poems in their own way. M. Medtner builds his romance “My love, lay your hand on my heart” according to the crescendo principle. Beginning with a quieter dynamics, the composer gradually increases the volume of the sound, which at the end leads to a general climax that moves from the point of the golden section. D. Klebanov chose a different way – to reinforce the dramatism of the poem. This was possible thanks to various musical and linguistic means: a strict, intense melody in the bass doubled in the sixth with a chromatic motion and semiquavers at the end of each bar in the last line of the fi rst stanza, designation Meno mosso, chromaticized vocal melody. The composers’ choice of poetic translations depends on the place and role of the romance in the general structure of the cycle. The eight-part composition of D. Klebanov is based on the wave principle of the plot development. The original four romances pave the way to the fi rst climax – unrequited love in the fi rst romance (“Every morning I awake and ask”), painful memories in the second one (“In a grove, on a wild path”), a tragic image in the third one (“My love, lay your hand on my heart “), and an attempt to overcome the pain in the fourth romance (“First I was afraid of darkness”). Further on, the development is based on contrast: the image of death in the fi fth romance (“Your lovely face, so fair and dear”), a subtle feeling of love in the sixth one (“Oh, let me plunge my heart”), worries because of the marriage of a loved one to another guy in the seventh romance (“I hear the fl ute and the fi ddle”) and disappointment in her spiritual values in the last one (“The violets blue”). Such a location of the third romance justifi es the choice of translation, where the colours are thickening and the content becomes even darker. Such kind of a fi gurative and semantic plot resembles the tradition of a romantic vocal cycle, in which the emotional state of the lyrical character, his emotional collisions сome to the fore. In this perspective, “ 3 Poems of H. Heine” by D. Medtner demonstrate another relationship between the romances of the cycle. All of them have feelings of sorrow, despair circle, a no-go. At the same time, distancing from the immediate events is felt, as if it is a look at someone else’s life, which is evidenced by the storytelling from the third person in the second and third romances. Therefore, the fi rst romance, based on the poem “My love, lay your hand on my heart”, is a kind of “preface” to the cycle, which involves some personal detachment. This leads to the selection of softened content in the translated version of the poem. The second romance, “In a grove, on a wild path”, has a similar function in the vocal cycle of D. Klebanov as it became the preparation for the climax of the third one. The semantic line of his poem is based on two storylines: the external one is the “theme of the journey” that is refl ected in the image of nature, and the internal one is the “theme of sadness”, which focuses on the feelings of the lyrical hero. The composer here, like Анна in the third romance, deepens the line of inner experiences. This became possible thanks to the Tranquillo tempo, fl at minor tonality, massive discordant accompaniment chords, variable measure, melody of the recitative-oratorial type. H. Heine’s poem, presented in the work of D. Klebanov, became the basis of the fi fth romance of E. Denisov’s vocal opus. Like the Ukrainian master, E. Denisov builds his cycle in the spirit of the romantic tradition, but in revealing the fi gurative structure of the poem he goes a different way. He makes a clear distinction between two fi gurativesemantic lines. This is refl ected in the form of a romance that has the features of binarity and variability, the embodiment of the metro-rhythmic structure of the verse based on two opposing principles - metric and cantilena, as well as other means of musical expression. Thus, choosing the same poem by H. Heine, D. Klebanov and E. Denisov represent their own vision of its content. Conclusions The comparative analysis of the embodiment of Heine’s texts by D. Klebanov and other composers of the twentieth century helps to highlight the individual approach of the Ukrainian artist. Despite the fact that the composer chooses similar means of musical expression, he fi nds his own way of refl ecting the semantics of the poetic source. In the above mentioned romances – “In a grove, on a wild path” and “My love, lay your hand on my heart” – the author focuses on the inner confl icts of the lyrical hero, his experiences. Attention paid to the sensory side of the poems also determined the selected translations, since the rejection of translators from the original results in a certain deformation of its meaning and fi gurative structure, which infl uences the musical embodiment of the poetic source.

Abstract:

In this article I explore how Cicely Saunders championed the hospice movement and initiated what became palliative care by representing her emotional connections with others. She became friends (and, once or twice, fell in love) with dying patients and encouraged others to follow her example in listening to patients’ descriptions of pain. Her approach was radical at a time when she believed doctors routinely ‘deserted’ dying patients because it urged them to understand another’s embodied pain as inextricably bound up with the emotional impact of a terminal diagnosis. Saunders’ attention to how patients expressed their experience is summed up in her term ‘total pain’, which communicates how an individual’s pain is a whole overwhelming experience, not only physical but also emotional, social and spiritual. Previous research frames ‘total pain’ in terms of narrative, emphasising Saunders’ focus on listening to her patients and her use of narratives as evidence in advocating for cultural and institutional change, both of which I understand as engaging with a patient’s emotional reality. However, as Saunders’ ideals become mainstreamed as palliative care and amid calls for ‘narrative palliative care’, I use evidence from Saunders’ extensive written output alongside archival material to suggest that, just as palliative care is by its nature not a single specific intervention, ‘total pain’ should not be understood as simply narrative. Building on existing work in this journal questioning the primacy of conventional understandings of narrative in the medical humanities, I demonstrate how Saunders’ prominent use of fragments and soundbites alongside longer case narratives demonstrates the limits of narrative, particularly when someone is dying. Saunders thus offers a case study for considering the implications that questioning the primacy of narrative as emotional evidence might have for our understandings of how empathy or advocacy can function, or be cultivated, in medical settings.

Abstract:

Both Protestantism and Catholicism of the seventeenth century experienced the influence of theology that stressed the importance of inner devotion, which went hand in hand with a strong emphasis on the emotional experience of faith. In dealing with death, however, the discourse of comfort was still dominant, designed to suppress the pain of loss rather than bringing that feeling to the fore. This ‘emotional regime’ also affected funeral elegiac poems in which feelings of joy and delight about the deceased’s heavenly destination dominate the initial period of grief. This article aims to understand whether these emotional regimes induced a form of emotional suffering and, if so, to what extent this was visible in contemporary funerary poetry: did, for example, it stick to grief and the inner pain of loss instead of suppressing it? The essay focuses on the elegiac poems by Jeremias de Decker (1609-1660) in the Dutch Republic and by Michiel de Swaen (1654-1707) in French Flanders. It examines the striking differences between the elegies written after the passing away of a public person, such as befriended priests and preachers, and the poems about a death in the private sphere in which poetry functioned more as a means of emotional refuge.

Abstract:

Purpose This study aims to explore the psychological effects of lockdown during the early stages of the COVID-19 pandemic on people living in an Italian prison. The suspension of family visits and most activities, along with the difficulties in applying social distancing to this vulnerable population was associated with increased psychological distress. Riots broke out over two days in more than 22 prisons across Italy at the beginning of March 2020, highlighting the negative psychological impact of the pandemic and the country’s emergency policies. Design/methodology/approach The research involves 17 men (Italians and foreigners) detained in a Lombardy prison from 1 March to 4 May 2020, corresponding to the lockdown phase in Italy. The qualitative content analysis (CA) of 27 posts, written by participants during that period and published on the blog “L’Oblò”, were analysed. The analysis allowed the identification of topics and subtopics that are related to two major categories of content: cognitions and emotional connotations about the COVID-19 lockdown in prison. Findings Analysis showed that blog post content was predominately negative in terms of emotional connotations. The most frequent coded negative emotional connotations were: missing, worry, psychological pain and fear, whilst the most frequent coded positive emotional connotations were: hope and gratitude for the support they received from prison workers. The rest of the blog content was coded as “cognitions”. Cognitions were coded as descriptions of lockdown effect on detention; prison during the COVID-19 emergency; the pandemic situation in general; and comparison between inside and outside prison. Originality/value The current study is original as it describes through blog CA the psychological condition of prisoners during the first COVID-19 pandemic lockdown in the most affected region in Italy.

Abstract:

Abstract Background Despite the progress in assessment and treatment of breast cancer, being diagnosed with it or receiving chemotherapy treatment is still conceived as a traumatic experience. Women develop negative thoughts about life and death with detrimental effects on their daily physical functioning/activities, emotional state and overall quality of life. The aim of our study was to evaluate the level of anxiety and depression among breast cancer patients receiving chemotherapy and explore the correlation between these psychological disorders, clinical, sociodemographic and genetic factors. Methods A cross-sectional study was conducted among breast cancer patients undergoing intravenous chemotherapy at the oncology outpatient unit of Hôtel-Dieu de France hospital (November 2017–June 2019; Ethical approval number: CEHDF1016). All patients gave their written informed consent and completed several validated scales, including the Hospital Anxiety and Depression scale (HADS) for the assessment of anxiety and depression. Sleep quality, insomnia, cognitive function, fatigue and pain were also evaluated. Genotyping for certain gene polymorphisms (CLOCK, PER2, CRY2, OPRM1, ABCB1, COMT, DRD2) was performed using the Lightcycler® (Roche). Results A total of 112 women was included. The prevalence of depression was 43.4%, and 56.2% of the patients reported anxiety (based on the HADS classification). Multivariable analysis showed that higher cognitive scores and taking fosaprepitant were significantly associated with lower depression and anxiety scores. Moreover, being married compared to single was also associated with lower depression scores, whereas higher PSQI scores (worse sleep quality) and having the PER2 AA variant genotype compared to GG were significantly associated with higher depression scores. Finally, reporting a more severe insomnia and having the COMT Met/Met genotype were significantly associated with a higher anxiety score. Conclusions Our study demonstrated a strong relationship between depression scores and cognitive impairment, sleep quality, marital status, fosaprepitant intake, and PER2 polymorphism, while anxiety scores were correlated to cognitive impairment, insomnia severity, fosaprepitant intake, and COMT polymorphism. The association with PER polymorphism was not previously reported. Identification of genetic and clinical risk factors for anxiety and depression would help clinicians implement an individualized management therapy aiming at preventing and alleviating the burden of these symptoms in breast cancer patients, hence improving their overall quality of life.

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This paper rests on how the two bestseller horror novels chosen to compare actually connect to each other. It reviews twin interspecies relationships. The first one is a young adult debut novel The Silver Kiss (2009) by English born American author Annette Curtis Klause. It was published in 1990 and republished in 2009 with two additional short stories, “The Summer of Love” and “The Christmas Cat.” Michigan Library Association picked it as the ‘Best Book of the Year Honor Book‘ in 1990. School Library Journal too gave it place among the Best Books in the same year and American Library Association, in 1991, considered it among the Best Books for Young Adults. The other is also a debut work Let the Right One In (original Swedish: Lat denratteKomma in), also known as Let Me In (2004). It is a vampire fiction novel written by Swedish writer John Ajvide Lindqvist and translated by Ebba Segerberg into English (2008).The subject of both the works taken into consideration here is loss, relationships and vampires. ‘Species’ means type or class of individuals sharing common characteristics, whereas inter-species means taking place between species. The Silver Kiss unfolds the tale of the teenager heroine Zoe’s life, taking into account her mother’s battle with cancer and death. She is very courageous, but all alone. She is in need of someone who can hold her in sleepless nights. Late one night, she takes a walk around the garden where she meets the dashing and silver haired Simon. He realizes the agony of desolation and death and Zoe’s pensive contemplation of her sinking mother. Both of them become reconciled to emotional loss via their budding inter-relation and are strongly concerned for each other. Let the Right One In revolves around the affinity betwixt Oskar Eriksson, who is twelve years of age and an age-old vampire in the figure of Eli who also happens to be a child. Oskar is all the time teased in school by a bunch of bullies, who take pleasure in inflicting severe pain and shame upon him. With Eli’s support, he is able to retaliate against his cuss harassers. A distinctive impression of vampirism has been created by both Klause and Lindqvist together. Connectively, the inferno strikes one with all the returning warmth. Details of the figures’ everyday lives have been shared with the readers appealingly. Initially, the whole lot of selves give the impression of being unattached, after all they come to be interrelated before long. By-and-large, the novels under discussion in this place are manifold and come up with the matters in question for the reviewers to ponder over. <p> </p><p><strong> Article visualizations:</strong></p><p><img src="/-counters-/edu_01/0771/a.php" alt="Hit counter" /></p>

Abstract:

I am not afraid to say unembellished I am dying but I do not want to do it looking the other way (Lorde 48) In this poem, written by Audre Lorde shortly before her death from breast cancer, Lorde seems to echo the sentiments of Butler and Rosenblum in their collaborative cancer narrative, Cancer in Two Voices, which deals with the experience of disease and dying. Yet in representing their experience of cancer collaboratively, Butler and Rosenblum not only avoid "looking the other way," but construct a text with which they can look to - and garner support from - each other, as well as a larger community. In Cancer in Two Voices Sandra Butler and Barbara Rosenblum necessarily transgress and re-approach dominant metaphors (or "embellishments") of breast cancer and disease by presenting us with a "cancer narrative" which is written collaboratively, in two voices. Consequently, this text presents the experience of breast cancer in the voices of both the "survivor" and "victim," the "healthy" and "ill," the "object" and "subject." In their vacillation between the "I" and the "we," Butler and Rosenblum simultaneously support and resist dominant representations of breast cancer as a terrifying, dichotomizing, solitary condition. In her introduction, Butler describes breast cancer as "a shared epidemic - a collective experience" (iv), indicating from the start that the "two voices" which invoke and involve their community in the experience of cancer consciously resist solitude in favour of solidarity. In choosing to construct their narrative in two voices, Butler and Rosenblum attempt to approach and reconfigure an illness that has been repeatedly figured as isolating and taboo as, rather, sacred and communal. One of the most evident ways in which Butler and Rosenblum implicate the reader in a community which can no longer remain "at a safe distance" from the disease is by linking together traumatic experiences and images of breast cancer victims, Holocaust Survivors, and AIDS victims. The cancer narrative itself is prefaced by a section entitled "Coming Home - 1983" which evokes images of Holocaust survivors and discusses their sense of Jewish identity. Foreshadowing her own experience of a scarred body on the beach, Barbara describes the Holocaust survivors that she met: "I went to the beach with them and saw their scarred bodies...they excavated the flesh of my living relatives" (6). Later, on vacation with Sandy, Barbara goes swimming naked: "Freedom, complete freedom for my mutilated body. Freedom to swim, to move, to announce to the world I am whole in spirit if not in form, with an inkling of wholeness in my new form. Sandy and I snuggled in the water, her body unbelievably comforting and close to mine. Glorious freedom painted on her face as well" (73). In this image, although Rosenblum refers to her "mutilated body," the image is overtaken by that of a couple, comforted by each other's bodies. In this way, she heals the scars and indicates how others might heal their scars. It is interesting, however, that this special moment of comfort between two lovers occurs while Sandy and Barbara are in another "element." In many ways, the double-voiced narrative of Cancer in Two Voices acts as a collaboration (i.e. an act of treason) against the patriarchal, in stitutional powers which traditionally generate and control the dominant metaphors and treatments of breast cancer. Rosenblum and Butler transfer the role of the "oppressor" or "enemy" onto the male doctors as well as the disease itself (53-54). In particular, Barbara expresses her anger at the medical establishment by chronicling her malpractice suit against Kaiser Hospital, which failed to diagnose her cancerous tumor sooner. Thus, Butler and Rosenblum transform the patriarchal institution of medicine into a force which is as culpable as the cancer itself. Marcella Paul explains that "an outstanding characteristic of the illness is the secretiveness which has been associated with it. The presence of cancer is often denied or concealed by both cancer victims and their doctors, and this secrecy suggests that the illness is viewed as dirty and evil as well as painful and life-threatening" (32-33). Furthermore, since the breast cancer 'victim' is identified with the disease itself, she (her very identity) becomes denied, concealed, "dirty." Thus, another way in which Butler and Rosenblum resist dominant approaches to cancer is to write frankly and openly about the disease and its effects. Rosenblum writes, "[t]he major identity change I made was my decision to be public with my cancer. I was going to enter it, use it, embrace it, and eventually incorporate it as part of me. I was going to write about it in my journals, in my articles. I was going to counsel women who needed help" (67). Rather than identifying the disease as 'outside' herself, Rosenblum resolves to immerse her identity in it and, in doing so, perhaps change the character of (and the way that women respond to) the disease itself. Similarly, Butler works to help "other women to see. To look into their lives without flinching or turning away" (99). Just as Butler and Rosenblum bear witness to Barbara's disease, so too do they insist on the importance of "being seen - something that as a lesbian couple [they] have never taken for granted" - in their decision to have a ceremony of commitment (Butler 117). Perhaps, Butler and Rosenblum's inclusion of the dimensions of their lesbian relationship in the cancer narrative adds another layer of resistance against the dominant (i.e. phallic, patriarchal) taboos of cancer - another way in which Butler and Rosenblum rupture and re-figure the traditional modes of narration, images, and metaphors of disease. Julia Watson reads autobiographies "as acts not just of coming to voice but as negotiations in naming the unspeakable" (141); thus, Butler and Rosenblum 'speak' the 'unspeakable' on two accounts: their lesbian relationship and their experience of breast cancer. There are times in the cancer narrative when the concept of "us" and of "community" which Butler and Rosenblum construct fails to console. As Barbara undergoes the pain of chemotherapy and advanced cancer, she writes that a "painful disentangling is necessary" for both her and Sandra. Despite their closeness, Barbara's ability to communicate with Sandra is impeded by her sense of isolation. Rosenblum writes, "I feel totally alone in my cancer. Alone in my agony. Alone in the pain" (95). Whereas Barbara expresses the solitary experience of being in her body, Sandra writes that "her body has become 'our' body" (172). This is one significant place where Butler's and Rosenblum's collaborative and communal paradigms break down. Rosenblum explains, "when I have sensations in my body, it's an unsharable experience . Even a private language such as I have with Sandy, is a self-contradiction. There cannot be private language . I observe myself trying to talk but am isolated in an imprisoned, solipsistic world, experiencing the terror, panic, and isolation because we believe in common language, common culture, common understandings" (129-130). The physical pain, experienced by only one of the "two voices" interferes with Butler and Rosenblum's desire for commonalities. As a result, Rosenblum must express her experience in solitude - alone, despite Sandy's "wanting to be included" (169). Barbara acknowledges the truth in the dominant metaphors of cancer as isolating, but juxtaposes it with a sense of connectedness. Although her belief in their connectedness has been shaken by her unbearable loneliness, Barbara asserts that this very loneliness connects her to the human condition, and therefore to a wider human community. Similarly, while Rosenblum describes her "unstable body" as "terrifying and confusing," resulting in a sense of helplessness, instability, and unpredictability (163), perhaps this journal/letter-writing - a chronicle of the instability of Barbara's body - is a means of gaining control and stability over her condition. It is a way of climbing out of her "crisis of meaning," of attempting to resist the sense that she is "no longer fluent in the language of [her] body, its signs and symbols" (165). In writing, Rosenblum looks "for new, stable ground" (166). She asserts, "[i]nstead of losing myself, instead of being consumed by this disease - and it can consume you if you don't watch it - instead, I grew. I turned it into a possibility for opening up to myself, for discovering, and for exploring new areas" (193). Rosenblum's account of her mastectomy resists the sense of dreaded mutilation. Despite her "horrified" reaction the first time she looked at her chest - "I touched myself at least twenty-five times a day, looking for my breast. But it wasn't there anymore...I hated my body" - Barbara's horror wears off (36). In "Living in an Unstable Body," Rosenblum writes: "Losing a breast did alter my body image, as well as my body, but I never felt a diminishment of my femininity. My breasts were never the center of my womanness" (160). Furthermore, upon witnessing Deena Metzger's mastectomy scar, Butler describes "a tree of life tattooed over her scar, her chest now 'an illuminated manuscript'" (31). Perhaps Cancer in Two Voices is the same sort of "illuminated manuscript" as Metzger's tattoo - one which reinvents the image of the mastectomy as a body illuminated rather than mutilated. Rather than "look away" from the mastectomy scar, Sandra approaches it with tenderness, even kissing it: "my mouth moving along the ruffled skin of her scar brought tears to both our eyes" (31). Similarly, the cancer narrative that Butler and Rosenblum write together is a means of looking at, touching, and publicly displaying the scars (emotional and physical) that result from breast cancer. Thus, perhaps it is accurate to say, that in writing a cancer narrative in two voices, Sandra and Barbara's individual voices are raised to the level of collective experience and - in refiguring dominant metaphors - the cancer narrative is given alternate form and is introduced into the community rather than being excluded from it. References Butler, Sandra and Barbara Rosenblum. Cancer in Two Voices. Expanded Edition. Duluth: Spinsters Ink, 1991. Godard, Barbara. "Women of Letters (Reprise): in Collaboration in the Feminine: Writings on Women and Culture from Tessera Ed. Barbara Godard. Toronto: Second Story Press, 1994, 258-306. Lorde, Audre. "Today Is Not the Day," The Marvelous Arithmetics of Distance (New York: Norton, 1993) 48. Paul, Marcella L. "Cancer as Metaphor: The Function of Illness in Manuel Puig's Publis angelical" in Chasqui - Revista de literatura latinoamericana. 17:1 (1988 May): 31-41. Sontag, Susan. Illness as Metaphor & Aids and its Metaphors. New York: Anchor Books-Doubleday, 1990. Watson, Julia. "Unspeakable Differences: The Politics of Gender in Lesbian and Heterosexual Women's Autobiographies" in De/Colonizing the Subject: The Politics of Gender in Women's Autobiography. Eds. Sidonie Smith and Julia Watson. Minneapolis: University of Minnesota Press, 1992. 139-68. Zeiger, Melissa F. Beyond Consolation: Death, Sexuality, and the Changing Shapes of Elegy Ithaca & London: Cornell University Press, 1997.

Abstract:

IntroductionThe horror film Hush (2016) has attracted attention since its release due to the uniqueness of its central character—a deaf–mute author who lives in a world of silence. Maddie Young (Kate Siegel) moves into a remote cabin in the woods to recover from a breakup and finish her new novel. Aside from a cat, she is alone in the house, only engaging with loved ones via online messaging or video chats during which she uses American Sign Language (ASL). Maddie cannot hear nor speak, so writing is her primary mode of creative expression, and a key source of information for the audience. This article explores both the presence and absence of text in Hush, examining how textual “captions” of various kinds are both provided and withheld at key moments. As an author, Maddie battles the limits of written language as she struggles with writer’s block. As a person, she fights the limits of silence and isolation as a brutal killer invades her retreat. Accordingly, this article examines how the interplay between silence, text, and sound invites viewers to identify with the heroine’s experience and ultimate triumph.Hush is best described as a slasher—a horror film in which a single (usually male) killer stalks and kills a series of victims with relentless determination (Clover, Men, Women). Slashers are about close, visceral killing—blood and the hard stab of the knife. With her big brown eyes and gentle presence, quiet, deaf Maddie is clearly framed as a lamb to slaughter in the opening scenes. Indeed, throughout Hush, Maddie’s lack of hearing is leveraged to increase suspense and horror. The classic pantomime cry of “He’s behind you!” is taken to dark extremes as the audience watches a nameless man (John Gallagher Jr.) stalk the writer in her isolated house. She is unable to hear him enter the building, unable to sense him looming behind her. Neither does she hear him killing her friend outside on the porch, banging her body loudly against the French doors.And yet, despite her vulnerability, she rises to the challenge. Fighting back against her attacker using a variety of multisensory strategies, Maddie assumes the role of the “Final Girl” in this narrative. As Carol Clover has explained, the Final Girl is a key trope of slasher films, forming part of their essential structure. While others in the film are killed, “she alone looks death in the face; but she alone also finds the strength either to stay the killer long enough to be rescued (ending A) or to kill him herself (ending B)” (Clover, Her Body, Himself). However, reviews and discussions of Hush typically frame Maddie as a Final Girl with a difference. Adding disability into the equation is seen as “revolutionising” the trope (Sheppard) and “updating the Final Girl theory” for a new age (Laird). Indeed, the film presents its Final Girl as simultaneously deaf and powerful—a twist that potentially challenges the dynamics of the slasher and representations of disability more generally.My Weakness, My StrengthThe opening sequence of Hush introduces Maddie’s deafness through the use of sound, silence, and text. Following an establishing shot sweeping over the dark forest and down to her solitary cottage, the film opens to warm domesticity. Close-ups of onion, eggs, and garlic being prepared are accompanied by clear, crisp sounds of crackling, bubbling, slicing, and frying. The camera zooms out to focus on Maddie, busy at her culinary tasks. All noises begin to fade. The camera focuses on Maddie’s ear as audio is eliminated, replaced by silence. As she continues to cook, the audience experiences her world—a world devoid of sound. These initial moments also highlight the importance of digital communication technologies. Maddie moves smoothly between devices, switching from laptop computer to iPhone while sharing instant messages with a friend. Close-ups of these on-screen conversations provide viewers with additional narrative information, operating as an alternate form of captioning from within the diegesis. Snippets of text from other sources are likewise shown in passing, such as the author’s blurb on the jacket of her previous novel. The camera lingers on this book, allowing viewers to read that Maddie suffered hearing loss and vocal paralysis after contracting bacterial meningitis at 13 years old. Traditional closed captioning or subtitles are thus avoided in favour of less intrusive forms of expositional text that are integrated within the plot.While hearing characters, such as her neighbour and sister, use SimCom (simultaneous communication or sign supported speech) to communicate with her, Maddie signs in silence. Because the filmmakers have elected not to provide captions for her signs in these moments, a—typically non-ASL speaking—hearing audience will inevitably experience disruptions in comprehension and Maddie’s conversations can therefore only be partially understood. This allows for an interesting role reversal for viewers. As Katherine A. Jankowski (32) points out, deaf and hard of hearing audiences have long expressed dissatisfaction with accessing the spoken word on television and film due to a lack of closed captioning. Despite the increasing technological ease of captioning digital media in the 21st century, this barrier to accessibility continues to be an ongoing issue (Ellis and Kent). The hearing community do not share this frustrating background—television programs that include ASL are captioned to ensure hearing viewers can follow the story (see for example Beth Haller’s article on Switched at Birth in this special issue). Hush therefore inverts this dynamic by presenting ASL without captions. Whereas silence is used to draw hearing viewers into Maddie’s experience, her periodic use of ASL pushes them out again. This creates a push–pull dynamic, whereby the hearing audience identify with Maddie and empathise with the losses associated with being deaf and mute, but also realise that, as a result, she has developed additional skills that are beyond their ken.It is worth noting at this point that Maddie is not the first Final Girl with a disability. In the 1967 thriller Wait until Dark, for instance, Audrey Hepburn plays Susy Hendrix, a blind woman trapped in her home by three crooks. Martin F. Norden suggests that this film represented a “step forward” in cinematic representations of disability because its heroine is not simply an innocent victim, but “tough, resilient, and resourceful in her fight against the criminals who have misrepresented themselves to her and have broken into her apartment” (228). Susy’s blindness, at first presented as a source of vulnerability and frustration, becomes her strength in the film’s climax. Bashing out all the lights in the apartment, she forces the men to fight on her terms, in darkness, where she holds the upper hand. In a classic example of Final Girl tenacity, Susy stabs the last of them to death before help arrives. Maddie likewise uses her disability as a tactical advantage. An enhanced sense of touch allows her to detect the killer when he sneaks up behind her as she feels the lightest flutter upon the hairs of her neck. She also wields a blaring fire alarm as a weapon, deafening and disorienting her attacker, causing him to drop his knife.The similarities between these films are not coincidental. During an interview, director Mike Flanagan (who co-wrote Hush with wife Siegel) stated that they were directly informed by Wait until Dark. When asked about the choice to make Maddie’s character deaf, he explained that “it kind of happened because Kate and I were out to dinner and we were talking about movies we liked. One of the ones that we stumbled on that we both really liked was Wait Until Dark” (cited in Thurman). In the earlier film, director Terence Young used darkness to blind the audience—at times the screen is completely black and viewers must listen carefully to work out what is happening. Likewise, Flanagan and Siegel use silence to effectively deafen the audience at crucial moments. The viewers are therefore forced to experience the action as the heroines do.You’re Gonna Die Screaming But You Won’t Be HeardHorror films often depend upon sound design for impact—the most mundane visuals can be made frightening by the addition of a particular noise, effect, or tune. Therefore, in the context of the slasher genre, one of the most unique aspects of Hush is the absence of the Final Girl’s vocalisation. A mute heroine is deprived of the most basic expressive tool in the horror handbook—a good scream. “What really won me over,” comments one reviewer, “was the fact that this particular ‘final girl’ isn’t physically able to whinge or scream when in pain–something that really isn’t the norm in slasher/home invasion movies” (Gorman). Yet silence also plays an important part in this genre, “when the wind stops or the footfalls cease, death is near” (Whittington 183). Indeed, Hush’s tagline is “silence can be killer.”The arrival of the killer triggers a deep kind of silence in this particular film, because alternative captions, text, and other communicative techniques (including ASL) cease to be used or useful when the man begins terrorising Maddie. This is not entirely surprising, as the abject failure of technology is a familiar trope in slasher films. As Clover explains, “the emotional terrain of the slasher film is pretechnological” (Her Body, Himself, 198). In Hush, however, the focus on text in this context is notable. There is a sense that written modes of communication are unreliable when it counts. The killer steals her phone, and cuts electricity and Internet access to the house. She attempts to use the neighbours’ Wi-Fi via her laptop, but does not know the password. Quick thinking Maddie even scrawls backwards messages on her windows, “WON’T TELL. DIDN’T SEE FACE,” she writes in lipstick, “BOYFRIEND COMING HOME.” In response, the killer simply removes his mask, “You’ve seen it now” he says. They both know there is no boyfriend. The written word has shifted from being central to Maddie’s life, to largely irrelevant. Text cannot save her. It is only by using other strategies (and senses) that Maddie empowers herself to survive.Maddie’s struggles to communicate and take control are integral to the film’s unfolding narrative, and co-writer Siegel notes this was a conscious theme: “A lot of this movie is … a metaphor for feeling unheard. It’s a movie about asserting yourself and of course as a female writer I brought a lot to that.” In their reflection on the limits of both verbal and written communication, the writers of Hush owe a debt to another source of inspiration—Joss Whedon’s Buffy the Vampire Slayer television series. Season four, episode ten, also called Hush, was first aired on 14 December 1999 and features a critically acclaimed storyline in which the characters all lose their ability to speak. Voices from all over Sunnydale are stolen by monstrous fairytale figures called The Gentlemen, who use the silence to cut fresh hearts from living victims. Their appearance is heralded by a morbid rhyme:Can’t even shout, can’t even cry The Gentlemen are coming by. Looking in windows, knocking on doors, They need to take seven and they might take yours. Can’t call to mom, can’t say a word, You’re gonna die screaming but you won’t be heard.The theme of being “unheard” is clearly felt in this episode. Buffy and co attempt a variety of methods to compensate for their lost voices, such as hanging message boards around their necks, using basic text-to-voice computer software, and drawing on overhead projector slides. These tools essentially provide the captions for a story unfolding in silence, as no subtitles are provided. As it turns out, in many ways the friends’ non-verbal communication is more effective than their spoken words. Patrick Shade argues that the episode:celebrates the limits and virtues of both the nonverbal and the verbal. … We tend to be most readily aware of verbal means … but “Hush” stresses that we are embodied creatures whose communication consists in more than the spoken word. It reminds us that we have multiple resources we regularly employ in communicating.In a similar way, the film Hush emphasises alternative modes of expression through the device of the mute Final Girl, who must use all of her sensory and intellectual resources to survive. The evening begins with Maddie at leisure, unable to decide how to end her fictional novel. By the finale she is clarity incarnate. She assesses each real-life scene proactively and “writes” the end of the film on her own terms, showing that there is only one way to survive the night—she must fight.Deaf GainIn his discussion of disability and cinema, Norden explains that the majority of films position disabled people as outsiders and “others” because “filmmakers photograph and edit their work to reflect an able-bodied point of view” (1). The very apparatus of mainstream film, he argues, is designed to embody able-bodied experiences and encourage audience identification with able-bodied characters. He argues this bias results in disabled characters positioned as “objects of spectacle” to be pitied, feared or scorned by viewers. In Hush, however, the audience is consistently encouraged to identify with Maddie. As she fights for her life in the final scenes, sound fades away and the camera assumes a first-person perspective. The man is above, choking her on the floor, and we look up at him through her eyes. As Maddie’s groping hand finds a corkscrew and jabs the spike into his neck, we watch his death through her eyes too. The film thus assists viewers to apprehend Maddie’s strength intimately, rather than framing her as a spectacle or distanced “other” to be pitied.Importantly, it is this very core of perceived vulnerability, yet ultimate strength, that gives Maddie the edge over her attacker in the end. In this way, Maddie’s disabilities are not solely represented as a space of limitation or difference, but a potential wellspring of power. Hence the film supports, to some degree, the move to seeing deafness as gain, rather than loss:Deafness has long been viewed as a hearing loss—an absence, a void, a lack. It is virtually impossible to think of deafness without thinking of loss. And yet Deaf people do not often consider their lives to be defined by loss. Rather, there is something present in the lives of Deaf people, something full and complete. (Bauman and Murray, 3)As Bauman and Murray explain, the shift from “hearing loss” to “deaf gain” involves focusing on what is advantageous and unique about the deaf experience. They use the example of the Swiss national snowboarding team, who hired a deaf coach to boost their performance. The coach noticed they were depending too much on sound and used earplugs to teach a multi-sensory approach, “the earplugs forced them to learn to depend on the feel of the snow beneath their boards [and] the snowboarder’s performance improved markedly” (6). This idea that removing sound strengthens other senses is a thread that runs throughout Hush. For example, it is the loss of hearing and speech that are credited with inspiring Maddie’s successful writing career and innovative literary “voice”.Lennard J. Davis warns that framing people as heroic or empowered as a result of their disabilities can feed counterproductive stereotypes and perpetuate oppressive systems. “Privileging the inherent powers of the deaf or the blind is a form of patronizing,” he argues, because it traps such individuals within the concept of innate difference (106). Disparities between able and disabled people are easier to justify when disabled characters are presented as intrinsically “special” or “noble,” as this suggests inevitable divergence, rather than structural inequality. While this is something to keep in mind, Hush skirts the issue by presenting Maddie as a flawed, realistic character. She does not possess superpowers; she makes mistakes and gets injured. In short, she is a fallible human using what resources she has to the best of her abilities. As such, she represents a holistic vision of a disabled heroine rather than an overly glorified stereotype.ConclusionHush is a film about the limits of text, the gaps where language is impossible or insufficient, and the struggle to be heard as a woman with disabilities. It is a film about the difficulties surrounding both verbal and written communication, and our dependence upon them. The absence of closed captions or subtitles, combined with the use of alternative “captioning”—in the form of instant messaging, for instance—grounds the narrative in lived space, rather than providing easy extra-textual solutions. It also poses a challenge to a hearing audience, to cross the border of “otherness” and identify with a deaf heroine.Returning to the discussion of the Final Girl characterisation, Clover argues that this is a gendered device combining both traditionally feminine and masculine characteristics. The fluidity of the Final Girl is constant, “even during that final struggle she is now weak and now strong, now flees the killer and now charges him, now stabs and is stabbed, now cries out in fear and now shouts in anger” (Her Body, Himself, 221). Men viewing slasher films identify with the Final Girl’s “masculine” traits, and in the process find themselves looking through the eyes of a woman. In using a deaf character, Hush suggests that an evolution of this dynamic might also occur along the dis/abled boundary line. Maddie is a powerful survivor who shifts between weak and strong, frightened and fierce, but also between disabled and able. This portrayal encourages the audience to identify with her empowered traits and in the process look through the eyes of a disabled woman. Therefore, while slashers—and horror films in general—are not traditionally associated with progressive representations of disabilities, this evolution of the Final Girl may provide a fruitful topic of both research and filmmaking in the future.ReferencesBauman, Dirksen, and Joseph J. Murray. “Reframing: From Hearing Loss to Deaf Gain.” Trans. Fallon Brizendine and Emily Schenker. Deaf Studies Digital Journal 1 (2009): 1–10. <http://dsdj.gallaudet.edu/assets/section/section2/entry19/DSDJ_entry19.pdf>.Clover, Carol J. Men, Women, and Chain Saws: Gender in the Modern Horror Film. New Jersey: Princeton UP, 1992.———. “Her Body, Himself: Gender in the Slasher Film.” Representations 20 (1987): 187–228.Davis, Lennard J. Enforcing Normalcy: Disability, Deafness, and the Body. London: Verso, 1995.Ellis, Katie, and Mike Kent. Disability and New Media. New York: Routledge, 2011.Gorman, H. “Hush: Film Review.” Scream Horror Magazine (2016) <http://www.screamhorrormag.com/hush-film-review/>.Jankowski, Katherine A. Deaf Empowerment: Emergence, Struggle, and Rhetoric. Washington: Gallaudet UP, 1997.Laird, E.E. “Updating the Final Girl Theory.” Medium (2016) <https://medium.com/@TheFilmJournal/updating-the-final-girl-theory-b37ec0b1acf4>.Norden, M.F. Cinema of Isolation: A History of Physical Disability in the Movies. New Jersey: Rutgers UP, 1994.Shade, Patrick. “Screaming to Be Heard: Community and Communication in ‘Hush’.” Slayage 6.1 (2006). <http://www.whedonstudies.tv/uploads/2/6/2/8/26288593/shade_slayage_6.1.pdf>.Sheppard, D. “Hush: Revolutionising the Final Girl.” Eyes on Screen (2016). <https://eyesonscreen.wordpress.com/2016/06/08/hush-revolutionising-the-final-girl/>.Thurman, T. “‘Hush’ Director Mike Flanagan and Actress Kate Siegel on Their New Thriller!” Interview. Bloody Disgusting (2016). <http://bloody-disgusting.com/interviews/3384092/interview-hush-mike-flanagan-kate-siegel/>.Whittington, W. “Horror Sound Design.” A Companion to the Horror Film. Ed. Harry M. Benshoff. Oxford: John Wiley & Sons, 2014: 168–185.

Abstract:

IntroductionIn 2017, both the disability community and popular culture are using the term “inspiration porn” to describe one form of discrimination against people with disability. ABC’s Speechless, “a sitcom about a family with a son who has a disability, (has) tackled why it’s often offensive to call people with disabilities ‘inspirational’” (Wanshel). The reasons why inspiration porn is considered to be discriminatory have been widely articulated online by people with disability. Amongst them is Carly Findlay, a disabled writer, speaker, and appearance activist, who has written that:(inspiration porn) shows non-disabled people doing good deeds for disabled people—feeding them chips at McDonald’s—’serving us all lessons in kindness’: or taking them to the high school dance. These stories usually always go viral. The person with disability probably never gave their permission for the photo or story to be used in a meme or told to the media (Findlay).The definition and dynamics of inspiration porn as illustrated in this quote will be expanded upon in this paper’s critical analysis of captions. Here, the term captions is used to describe both writing found on memes and on Facebook posts (created by a “poster”), and the comments written below these posts (created by “commenters”). Facebook threads underneath posts about people with disability both “reflect and create” (Barnes, Mercer and Shakespeare 202) current societal attitudes towards disability. That is, such threads not only illustrate negative societal attitudes towards disability, but can also perpetuate these attitudes by increasing people’s exposure to them. This paper will focus on a specific case study of inspiration porn on Facebook—the crowning of a student with autism as prom king—and consider both the conflict of whether people’s kind words are patronising use of language, as well as the concerns of over-disclosure used in this thread.What Is Inspiration Porn?The genesis of the term inspiration porn is commonly attributed to the late Stella Young, a disabled woman who was an advocate for people with disability. However, the term has been traced to a blog post written in February 2012 (bear). Anecdotal evidence from Lisa Harris, a disability consultant and advocate with over 20 years’ disability education experience, suggests that the term was blogged about as far back as 2006 on Rachel Cohen-Rottenberg’s Webpage Disability and Representation (Harris). However, it was Young who popularised the term with her 2012 article We’re Not Here for Your Inspiration and 2014 TED Talk I’m Not Your Inspiration, Thank You Very Much. Young defined inspiration porn as “an image of a person with a disability, often a kid, doing something completely ordinary—like playing, or talking, or running, or drawing a picture, or hitting a tennis ball—carrying a caption like ‘your excuse is invalid’ or ‘before you quit, try’”.It is worth noting that the use of the word porn has been considered controversial in this context. Yet it can be argued that the perception of the person with disability having achieved something great gives the person without disability a hit of positive “inspired” emotion. In this way, such inspiration could be termed as porn as it serves the purpose of fulfilling the “pornographic” self-gratification of people without disability.The term inspiration porn has historically been used in disability studies in two ways. Firstly, it has been used to describe the “ableist gaze” (Davis), which is when a person with disability is ‘seen’ through the eyes of someone without disability. Indeed, just as the “male gaze” (Mulvey) is implicit in sexualised porn, so too the “ableist gaze” is implicit in inspiration porn. Secondly, it has been used to highlight the lack of power experienced by people with disability in cultural representation (Barnes, Mercer, and Shakespeare 201). This study is a good example of the latter—it is not uncommon for people with disability to be refuted when they speak out against the inherent discrimination found within captions of (intended) kindness on Facebook threads.Inspiration porn is also a form of “objectification” (Perry) of people with disability, and is based on stereotypes (Haller and Zhang 22) about disability held by people without disability. According to Dr. Paul Sinclair, a disability scholar with 15 years’ experience in disability education, objectification and stereotyping are essential factors to understanding inspiration porn as discrimination:when a person with disability engages in their daily life, it is possible that a person without disability sees them as inspirational by superimposing his/her stereotypical perception of, or understanding about, people with disability onto the identity of the person, as a human being.Such objectification and stereotyping of people with disability is evident across various media captioning. This is particularly so in social media which often includes memes of images with “inspiring” captions—such as the ones Young highlighted as clear examples of inspiration porn, which “feature the Hamilton quote (‘The only disability in life is a bad attitude’)”. Another example of this kind of captioning is found in news items such as the 2015 article Disabled Teen Crowned Homecoming Queen in Awesome Way as featured in the article USA Today (Saggio). This article described how a student not identified as having a disability gave her homecoming queen crown to a student with a disability and captioned the YouTube clip of these students with, “High school senior [Name] was hoping she’d be crowned homecoming queen. She has cerebral palsy and has never felt like she fit in at school. What happened during the crowning ceremony will warm your heart” (Saggio). The fact that the young woman was pleased with getting the crown does not mitigate the objectifying dynamics of inspiration porn present within this example. Captioning such as this both creates and reflects some of the existing attitudes—including charity and its appeal to emotionality—that perpetuate inspiration porn.Measuring Inspiration Porn with Sentiment AnalysisThe challenge for the researcher analysing Facebook threads is how to meaningfully interpret the captions’ numerous contexts. The methodology of this research used a quantitative approach to gather numerical data about selected Facebook captions. This paper discusses data gained from a sentiment analysis (Pang and Lee; Thelwall et al.; Driscoll) of these captions within the contexts of my own and other researchers’ analyses of inspiration porn, as well as the perspectives of people with disability.The sentiment analysis was conducted using SentiStrength, a software tool that extracts both positive and negative sentiment strengths “from short informal electronic text” (Thelwall et al., 2545), and ranks it “on a numerical scale” (Driscoll 3). Sentiment analysis and SentiStrength are useful, but not perfect, tools with which to analyse Facebook captions. For example, SentiStrength determines two scales: a positive emotion measurement scale ranging from +1 (neutral) to +5 (most positive), and a negative emotion measurement scale ranging from –1 (neutral) to –5 (most negative). It calculates the positive and negative scores concurrently rather than averaging them out in order to acknowledge that captions can and do express mixed emotion (Driscoll 5).News articles about people with disability attending proms and comparable events, such as the homecoming queen example described above, are often criticised by disability activists for perpetuating inspiration porn (Mort; Findlay; Brown). Based on this criticism, sentiment analysis was used in this research to measure the emotional strength of captions—particularly their possible use of patronising language—using the Autism Speaks Facebook post as a case study. The post featured an image of a high school student with autism who had been crowned prom king.The Autism Speaks Facebook page was set up to fund “research into the causes, prevention, treatments and a cure for autism; increas(e) awareness of autism spectrum disorders; and advocat(e) for the needs of individuals with autism and their families” (Autism Speaks). The location of the prom was not specified; however, Autism Speaks is based in New York. This particular Facebook page was selected for this study based on criticism that Autism Speaks receives from disability advocates. One of the major critiques is that “(its) advertising depends on offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as tragic burdens on our families and society” (Boycott Autism Speaks). Autism Speaks has also been described as a problematic example of an organisation that “dictate(s) how disability should be perceived and dealt with. Often without input of disabled people either in the design or implementation of these organizations” (crippledscholar). This article goes on to state that “charities always frame what they do as positive and helpful even when the people who are the intended recipients disagree.”The prom king post included a photo of a young man with autism after he was crowned. He was standing beside a woman who wasn’t identified. The photo, posted by the young man’s aunt on the Autism Speaks Facebook page, included a status update that read:My autistic nephew won PROM KING today! Just so you all know, having a disability doesn’t hold you back if you don’t let it! GO [NAME]. #AutismAwareness (Autism Speaks)The following caption from the comment thread of the same Facebook post is useful as an example of how SentiStrength works. The caption read:Tears of Joy! Thank you for posting!!! Wow this gives me hope for his and my son’s and everyone’s special wonderful child nephew and niece! Way cool!However, because SentiStrength does not always accurately detect and measure sarcasm or idiomatic language usage, ”Tears” (the only negatively interpreted word in this caption) has been scored as –4, while the overall positive sentiment was scored as 3. Therefore, the final SentiStrength score of this caption was 3, –4, thereby demonstrating both the utility and limitations of SentiStrength as a sentiment analysis tool. This is useful to understand when analysing the data it produces.When analysing the entire thread, the sentiment analysis results across 238 captions, showed that 2 was the average strength of positive emotion, and that –1.16 was the average strength of negative emotion. The following section will analyse how a specific caption chosen from the most positively-scored captions from these data indicates that inspiration porn is possibly evident within.Use of Language: Kind, or Patronising?This discussion analyses the use of language in one caption from this thread, focusing on the way it likely demonstrated the ableist gaze. The caption was the most positive one from these data as scored by SentiStrength (5, –1) and read, ”CONGRATULATIONS SWEETIE!!!”. While it is noted that basing this analysis primarily on one caption provides limited insight into the dynamics of inspiration porn, this analysis forms a basis from which to consider other “inspirational” Facebook posts about people with disability. As well as this caption, this discussion will also draw upon other examples mentioned in this paper—from the homecoming queen article in USA Today to another caption on the Autism Speaks thread—to illustrate the dynamics of inspiration porn.On the surface, this congratulatory caption seems like a kind thing to post. However, inspiration porn has been identified in this analysis based on the caption’s effusive use of punctuation coupled with use of capital letters and the word “sweetie”. The excitement depicted through use of multiple exclamation marks and capital letters implies that the commenter has a personal connection with the prom king, which is a possibility. However, this possibility becomes less feasible when the caption is considered within the context of other captions that display not dissimilar use of language, as well as some that also display intimate emojis, such as grin faces and love heart eyes. Further, when this use of language is used with any consistency across a thread and is not coupled with textual information that implies a personal connection between the commenter/s and the prom king, it could be interpreted as patronising, condescending and/or infantilising. In addition, “sweetie” is a term of endearment commonly used in conversation with a romantic partner, child, or someone the speaker/writer knows intimately. While, again, it is possible that these commenters knew the prom king intimately, a more likely possibility is that he was being written to by strangers, yet using language that implied he was close to them—which would then have the same patronising connotations as above. It can therefore be argued that there is a strong possibility that this heightened use of intimate and emotional language was chosen based on his autism diagnosis.The conclusion drawn above is based in part on contextual similarities between the Autism Speaks post and its associated thread, and the aforementioned homecoming queen news article. In the former, it is likely that the young prom king was congratulated effusively because of his autism diagnosis. Similarly, in the latter article, the young woman was crowned not because she was named homecoming queen, but because the crown was given to her because of her diagnosis of cerebral palsy. As both gestures appear to have been based on others’ perceptions of these individuals’ disabilities rather than on their achievements, they are both likely to be patronising gestures.Over-DisclosureIn addition to use of language, another noteworthy issue in the captions thread on the Autism Speaks Facebook page was that many of them were from parents disclosing the diagnosis of their child. One example of this was a post from a mother that read (in part):I’ll be over here worried & concerned with the other 9,999 & ½ things to deal with, keeping up with new therapies, current therapy, we came in progress from any past therapies, meltdowns, dietary restrictions, educational requirements, The joy and difficulties of not just learning a new word but actually retaining that word, sleep, being hit, keeping him from hitting himself, tags on clothes etc. etc. [sic] (Autism Speaks)The above commenter listed a number of disability-specific issues that she experienced while raising her son who has autism. The context for her caption was a discussion, unrelated to the original post, that had sparked underneath a sub-thread regarding whether the use of person-first language (“person with autism”) or identity-first language (“Autistic person”) was best when referring to someone with autism. The relationship between inspiration porn and this intimately negative post about someone with disability is that both types of post are examples of the “ableist gaze”: inspiration porn demonstrates an exaggerated sense of positivity based on someone’s disability, and this post demonstrates disregard for the privacy of the person being posted about—perhaps due to his disability. The ease with which this negative comparison (over-disclosure) can be made between ‘inspirational’ and ‘negative’ posts illustrates in part why inspiration porn is a form of discrimination—intentional or otherwise.Furthermore, some of the children who were disclosed about on the main thread were too young to be asked consent, and it is unclear whether those who were old enough had the capacity to provide informed consent. Research has found that online over-disclosure in general is a matter of concern.The specific practice of online over-disclosure from parents about their children—with or without disability—has been raised by Leaver (151), “what happens before young people have the agency, literacy or skills to take the reins of their own selves online? Parents, guardians, loved ones and others inevitably set the initial identity parameters for young people online.” Over-disclosure is therefore also an issue that concerns people with disability, and the people closest to them.There exists both anecdotal evidence and academic research regarding online over-disclosure about people with disability. The research states that when people with physical disability disclose online, they employ strategic approaches that involve the degree to which they disclose (Furr, Carreiro, and McArthur). This suggests that there are complex factors to consider around such disclosure. Also relevant is that the practice of over-disclosure about another person’s disability, regardless of whether that disclosure is made by a close family member, has been critiqued by people (Findlay; Stoltz) within the disability community: “would you publicly share this information about your other children, an aging parent, or yourself?” (Stoltz). Finally, the practice of disability over-disclosure by anyone other than the person themselves supports the understanding that inspiration porn is not about the “object” of inspiration; rather, it serves to give pleasure (and/or pain) to the objectifier.ConclusionInspiration porn via the ableist gaze is discriminatory because it focuses on a (societally) undesirable trait in a way that serves the “gazer” at the expense of the “gazed-at”. That is, people with disability are objectified and exploited in various ways that can initially appear to be positive to people without disability. For example, when someone with disability posts or is posted about on Facebook, a person without disability might then add a caption—possibly with good intentions—that serves as their “inspired” response to what it “must” be like to have a disability. It can be argued that such captions, whether on news articles or when framing social media images, therefore either reflect or create existing social inequalities—and possibly do both.In continuing to use the term inspiration porn to describe one form of discrimination against people with disability, both the disability community and popular culture are contributing to an important narrative that scholarship needs to continue to address. Indeed, the power imbalance that is celebrated within inspiration porn is in some ways more insidious than malicious discrimination against people with disability, because it is easier to mistake as kindness. The research sample presented in this paper supports the countless expressions of anecdotal evidence given by people with disability that this “kindness” is inspiration porn; a damaging expression of the ableist gaze.ReferencesAutism Speaks. Facebook 21 May 2017 <https://www.facebook.com/autismspeaks>.Barnes, Colin, Geof Mercer, and Tom Shakespeare. Exploring Disability. Maiden, MA: Blackwell Publishers Inc., 1999.bear, romham a. “Inspiration Porn.” radical access mapping project 7 Apr. 2014. 21 May 2017 <https://radicalaccessiblecommunities.wordpress.com/2012/02/14/inspiration-porn/>.The Autistic Self Advocacy Network, et al. “Why Boycott.” Boycott Autism Speaks, 6 Jan. 2014. 21 May 2017 <http://www.boycottautismspeaks.com/why-boycott-1.html>.Brown, Lydia X.Z. “Disabled People Are Not Your Feel-Good Back-Pats.” Autistic Hoya 11 Feb. 2016. 21 May 2017 <http://www.autistichoya.com/2016/02/disabled-people-are-not-your-feel-good-back-pats.html>.Crippledscholar. “Inspiration Porn Is Not Progress, It’s a New Kind of Oppression.” crippledscholar 5 May 2015. 21 May 2017 <https://crippledscholar.com/2015/05/05/inspiration-porn-is-not-progress-its-a-new-kind-of-oppression/>.Davis, Lennard J. Enforcing Normalcy: Disability, Deafness, and the Body. London: Verso, 1995.Driscoll, Beth. “Sentiment Analysis and the Literary Festival Audience.” Continuum 29.6 (2015): 861–873.Findlay, Carly. “Inspiration and Objectification of People with Disability – A Resource for Teachers and Parents.” Tune into Radio Carly 5 Feb. 2017. 21 May 2017 <http://carlyfindlay.blogspot.com.au/2017/02/inspiration-and-objectification-of.html>.Findlay, Carly. “When Parents Overshare Their Children’s Disability.” Sydney Morning Herald 23 July 2015. 21 May 2017 <http://www.smh.com.au/lifestyle/news-and-views/opinion/when-parents-overshare-their-childrens-disability-20150724-gijtw6.html>.Furr, June B., Alexis Carreiro, and John A. McArthur. “Strategic Approaches to Disability Disclosure on Social Media.” Disability & Society 31.10 (2016): 1353–1368.Haller, Beth, and Lingling Zhang. “Stigma or Empowerment? What Do Disabled People Say about Their Representation in News and Entertainment Media?” Review of Disability Studies: An International Journal 9.4 (2014).Harris, Lisa. “Genesis of Term ‘Inspiration Porn’?” Letter. 5 Oct. 2016.Leaver, Tama. “Born Digital? Presence, Privacy, and Intimate Surveillance.” Re-Orientation: Translingual Transcultural Transmedia. Studies in Narrative, Language, Identity, and Knowledge. Eds. John Hartley and Weigou Qu. Shanghai: Fudan University Press, 2015. 23 May 2017 <https://www.academia.edu/11736307/Born_Digital_Presence_Privacy_and_Intimate_Surveillance>.Mulvey, Laura. “Narrative Cinema and Visual Pleasure.” Visual and Other Pleasures. 1975.Mort, Mike. “Pity and the Prom.” Disabled Identity 9 May 2016. 21 May 2017 <https://disabledidentity.wordpress.com/2016/04/27/pity-and-the-prom/>.Pang, Bo, and Lillian Lee. “Opinion Mining and Sentiment Analysis.” Foundations and Trends® in Information Retrieval 2.1-2 (2008): 1–135.Perry, David M. “How ‘Inspiration Porn’ Reporting Objectifies People with Disabilities.” The Establishment 25 Feb. 2016. 23 May 2017 <https://theestablishment.co/how-inspiration-porn-reporting-objectifies-people-with-disabilities-db30023e3d2b>.Saggio, Jessica. “Disabled Teen Crowned Homecoming Queen in Awesome Way.” USA Today 13 Nov. 2015. 21 May 2017 <https://www.usatoday.com/story/news/humankind/2015/11/13/disabled-teen-crowned-homecoming-queen-awesome-way/75658376/>.Sinclair, Paul. “Inspiration Porn: Email Interview.” Letter. 21 Oct 2016.Stoltz, Melissa. “Parents of Children with Disabilities: Are We Speaking with or for a Community?” Two Thirds of the Planet 22 Jan. 2016. 21 May 2017 <http://www.twothirdsoftheplanet.com/parents-disability/>.Thelwall, Mike, et al. “Sentiment Strength Detection in Short Informal Text.” Journal of the American Society for Information Science and Technology 61.12 (2010): 2544–2558.Wanshel, Elyse. “This Show Just Schooled Everyone on ‘Inspiration Porn’.” Huffington Post 16 Jan. 2017. 21 May 2017 <http://www.huffingtonpost.com.au/entry/speechless-disability-porn_us_5877ddf6e4b0e58057fdc342>.Young, Stella. “I’m Not Your Inspiration, Thank You Very Much.” TED Talk Apr. 2014. 21 May 2017 <https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much>.Young, Stella. “We’re Not Here for Your Inspiration.” ABC Ramp Up 1 July 2012. 21 May 2017 <http://www.abc.net.au/rampup/articles/2012/07/02/3537035.htm>.

Abstract:

As a mode of open access public self-expression, blogs are one form of the unfolding massification of culture (Lovink). Though widely varied in content and style, they are characterised by a reverse chronological diary-like format, often produced by a single author, and often intimately expressive of that author’s thoughts and experiences. The purpose of this paper is to explore the use of blogs as a space for the detailed and on-going expression of the day to day experiences of sufferers of serious illness. We might traditionally consider the experience of illness as absolutely private, but illness, along with the process of recovery, retains a social and cultural aspect (Kleinman et al). A growing body of literature has recognised that the Internet has become a significant space for the recovery work that accompanies the diagnosis of serious illness (Orgad; Pitts; Hardey). Empowerment and agency are often emphasised in this literature, particularly in terms of the increased access to information and support groups, but also in the dynamic performances of self enabled by different forms of online communication and Web production. I am particularly interested in the ongoing shifts in the accessibility of “private” personal experience enabled by blog culture. Although there are thousands of others like them, three “illness blogs” have recently caught my attention for their candidness, completeness and complexity, expressing in vivid depth and detail individual lives transformed by serious illness. The late US journalist and television producer Leroy Sievers maintained a high profile blog, My Cancer, and weekly podcast on the National Public Radio website until his death from metastasised colon cancer in August 2008. Sievers used his public profile and the infrastructure of the NPR website to both detail his personal experience and bring together a community of people also affected by cancer or moved by his thoughts and experiences. The blogger Brainhell came to my attention through blogsphere comments and tributes when he died in February 2008. Spanning more than four years, Brainhell’s witty and charming blog attracted a significant audience and numerous comments, particularly toward the end of his life as the signs of his deteriorating motor system as a result of Amyotrophic Lateral Sclerosis (ALS, or “Lou Gherig’s disease”) riddled his intimate posts. Another blog of interest to me here, called Humanities Researcher, incorporates academic Stephanie Trigg’s period of illness and recovery from breast cancer within a pre-existing and ongoing blog about the intersection between professional and personal life. As I had crossed paths with Trigg while at Melbourne University, I was always interested in her blog. But her diagnosis with breast cancer and subsequent accounts of tests, the pain and debilitation of treatment and recovery within her blog also offer valuable insight into the role of online technologies in affecting experiences of illness and for the process of recovery.The subject matter of illness blogs revolves around significant personal transformations as a result of serious illness or trauma: transformations of everyday life, of body and emotional states, relationships, physical appearance, and the loss or recovery of physical ability. It is not my intention in this brief analysis to overgeneralise on the basis of some relatively limited observations. However, many blogs written in response to illness stand out for what they reveal about the shifting location or locatability of self, experience and the events of ongoing illness and thus how we can conceptualise the inherent “privacy” of illness as personal experience. Self-expression here is encompassing of the possibilities through which illness can be experienced – not as representation of that experience, a performance of a disembodied self (though these notions have their merits) – but an expressive element of the substance of the illness as it is experienced over time, as it affects the bodies, thoughts, events and relationships of individuals moving toward a state of full recovery or untimely death. Locating Oneself OnlineMany authors currently examining the role of online spaces in the lives of sufferers of serious illness see online communication as providing a means for configuring experience as a meaningful and coherent story, and thus conferring, or we could say recovering, a sense of agency amidst a tumultuous and ongoing battle with serious illness (Orgad, Pitts). In her study of breast cancer discussion forums, message boards and websites, Orgad (4) notes their role in regaining “the fundamentals disturbed by cancer” (see also Bury). Well before the emergence of online spaces, the act or writing has been seen as “a crucial affirmation of living, a statement against fearfulness, invisibility and silence” (Orgad, 67; Lorde, 61). For many decades scientists have asserted that “brief structured writing sessions can significantly improve mental and physical health for some groups of people” (Singer and Singer 485). The Internet has provided an infrastructure for bringing personal experiences of illness into the public realm, enabling a new level of visibility. Much of the work on illness and the Internet focuses on the liberatory and empowering act of story telling and “disembodied” self-expression. Discussion forums and cancer websites enable the formation of patient led “discourse communities” (Wuthnow). Online spaces such as discussion forums help their participants gain a foothold within a world they share with other sufferers, building communities of practice (Wegner) around specific forms of illness. In this way, these forms of self-expression and communication enable the sufferer of serious illness to counter the modes by which they are made “subjects”, in the Foucauldian sense, of medical discourse. All illness narratives are defined and constructed socially, and are infused with relations of power (Sontag; Foucault, Birth of the Clinic). Forms of online communication have shifted productive practice from professions to patients. Blogs, like discussion forums, websites, email lists etc., have come to play a central role in this contemporary shift. When Lovink (6) describes blogs as a “technology of the self” he points to their role in “self-fashioning”. Blogs written about and in the context of personal illness are a perfect example of this inclination to speak the truth of oneself in the confessional mode of modern culture borne of the church, science and talkshow television. For Foucault (Technologies of the Self, 17), technologies of the self: Permit individuals to effect by their own means or with the help of others a certain number of operations on their own bodies and souls, thoughts, conduct and way of being, so as to transform themselves in order to attain a state of happiness, purity, wisdom, perfection, immortality. Likewise, as a central concept for understanding Internet identity, the notion of performance (eg, Turkle) highlights the creativity with which illness bloggers may present their role as cancer patient in online spaces, perhaps as an act of resistance to “subjectifying” medical discourses and practices. Many bloggers wrest semiotic power through regular discussion of the language of pathology and medical knowledge, treatment processes and drugs. In the early stages of her treatment, Trigg plays with the new vocabulary, searching for etiologies and making her own semantic connections: I’ve learnt two new words. “Spiculated” describes the characteristic shape of a carcinoma on an ultrasound or x-ray. …The other word is at the other end of the spectrum of linguistic beauty: “lumpectomy”. It took me quite a while to realise that this was not really any different from partial mastectomy; or local excision. It’s an example of the powerful semantic connotations of words to realise that these phrases name the same processes: a long cut, and then the extraction of the diseased tissue (Humanities Researcher, 14 Oct. 2006).Partly due to the rarity of his illness, Brainhell goes through weeks of waiting for a diagnosis, and posts prolifically in an attempt to test out self-diagnoses. Amidst many serious and humorous posts analysing test results and discussing possible diagnoses Brainhell reflects on his targeted use of the blog: I am a word person. I think in sentences. I often take complex technical problems at work and describe them to myself in words. A story helps me understand things better. This blog has become a tool for me to organize my own thoughts about the Mystery Condition. (Brainhell, 6 Jan. 2004)The emancipatory potential of blog writing, however, can be easily overstated. While it is valuable to note and celebrate the performative potential of online production, and its “transformative” role as a technology of the self, it is easy to fall back on an unproblematic distinction between the actual and the virtual, the experience of illness, and its representation in online spaces. Textual expression should always refer us to the extra-textual practices that encompass it without imposing an artificial hierarchy of online and offline, actual experience and representation. As with other forms of online communication and production, the blog culture that has emerged around forms of serious illness plays a significant role in transforming our concepts of the relationship between online and offline spaces. In his My Cancer blog, Sievers often refers to “Cancer World”. He notes, for example, the many “passing friends” he makes in Cancer World through the medical staff and other regular patients at the radiation clinic, and refers to the equipment that sustains his life as the accoutrements of this world. His blog posts revolved around an articulation of the intricacies of this “world” that is in some ways a means of making sense of that world, but is also expressive of it. Sievers tries to explain the notion of Cancer World as a transformation of status between insider & outsider: “once we cross over into Cancer World, we become strangers in a strange land. What to expect, what to hope for, what to fear – none of those are clear right now” (My Cancer, 30 June 2008). Part of his struggle with the illness is also with the expression of himself as encompassed by this new “world” of the effects and activities of cancer. In a similar way, in her Humanities Researcher blog Trigg describes in beautiful detail the processes, routines and relationships formed during radiation treatment. I see these accounts of the textures of cancer spaces as lying at the point of juncture between expression and experience, not as a disembodied, emancipatory realm free from the fetters of illness and the everyday “real” self, but always encompassed by, and encompassing them, and in this way shifting what might be understood to remain “private” in personal experience and self-expression. Blogs as Public Diary Axel Bruns (171), following Matthew Rothenberg, characterises blogs as an accessible technological extension of the personal home page, gaining popularity in the late 1990s because they provided more easy to use templates and web publishing tools than earlier webpage applications. Personalised self expression is a defining element. However, the temporal quality of the reverse chronological, timestamped entry is equally significant for Bruns (171). Taking a broader focus to Bruns, who is most interested in the potential democratisation of media in news related blogs, Lovink sees the experimentation with a “public diary” format as fundamental, signalling their “productive contradiction between public and private” (Lovink 6). A diary may be written for posterity but it is primarily a secretive mode of communication. While blogs may mirror the temporal form of a diary, their intimate focus on self-expression of experience, thoughts and feelings, they do so in a very different communicative context.Despite research suggesting that a majority of bloggers report that they post primarily “for themselves” (Lenhart and Fox) – meaning that they do not deliberately seek a broad audience or readership – the step of making experiences and thoughts so widely accessible cannot be overlooked in any account of blogging. The question of audience or readership, for example, concerns Trigg in her Humanities Researcher blog: The immediacy of a blog distinguishes it from a journal or diary. I wrote for myself, of course, but also for a readership I could measure and chart and hear from, sometimes within minutes of posting. Mostly I don’t know who my readers are, but the kindness and friendship that come to me through the blog gave me courage to write about the intimacies of my treatment; and to chart the emotional upheaval it produced. (Trigg)In their ability to produce a comprehensive expression of the events, experiences, thoughts and feelings of an individual, blogs differ to other forms of online communication such as discussion forums or email lists. Illness blogs are perhaps an extreme example, an open mode of self-expression often arising abruptly in reaction to a life transforming diagnosis and tracking the process of recovery or deterioration, usually ending with remission or death. Brainhell’s blog begins with MRI results, and a series of posts about medical examination and self-examination regarding his mystery condition: So the MRI shows there is something on my brain that is not supposed to be there. The doctor thinks it is not a tumor. That would be good news. …As long as you are alive and have someone to complain to, you ain’t bad off. I am alive and I am complaining about a mystery spot on my brain, and lazy limbs. (Brainhell, 24 Dec. 2003)Brainhell spent many weeks documenting his search for a diagnosis, and continued writing up to his final deterioration and death in 2008. His final posts convey his physical deterioration in truncated sentences, spelling errors and mangled words. In one post he expresses his inability to wake his caregiver and to communicate his distress and physical discomfort at having to pee: when he snorted on waking, i shrieked and he got me up. splayed uncomfortably in the wc as he put dry clothes on me, i was gifted with his words: “you choose this, not me. you want to make it hard, what can i do?” (Brainhell, 13 Jan. 2008). The temporal and continuous format of the blog traverses the visceral, corporeal transformations of body and thought over time. The diary format goes beyond a straightforward narrative form in being far more experiential and even experimental in its self-reflective expression of the events of daily life, thoughts, feelings and states of being. Its public format bears directly on its role in shaping the communicative context in which that expression takes place, and thus to an extent shapes the experience of the illness itself. Nowhere does the expressive substance of the blog so fully encompass the possibilities through which the illness could be experienced than in the author’s death. At this point the blog feels like it is more than a catalogue, dialogue or self-presentation of a struggle with illness. It may take on the form of a memorial (see for example Tom’s Road to Recovery) – a recovery of the self expressed in the daily physical demise, through data maintained in the memory of servers. Ultimately the blog stands as a complex trace of the life lived within its posts. Brainhell’s lengthy blog exemplifies this quite hauntingly. Revealing the Private in Public Blogs exemplify a further step in the transformation of notions of public and private brought about by information and screen technologies. McQuire (103) refers to contemporary screen and Internet culture as “a social setting in which personal identity is subject to new exigencies”. Reality television, such as Big Brother, has promoted “a new mode for the public viewing of private life” (McQuire 114) contributing to the normalisation of open access to personal, intimate revelations, actions and experiences. However, privacy is “an elusive concept” that relates as much to information and property as to self-expression and personal experience (McCullagh). That is, what we consider private to an individual is itself constituted by our variable categories of personal information, material or immaterial possessions, or what counts as an expression of personal experience. Some analysts of online storytelling in the context of illness recognise the unsustainability of the distinction between public and private, but nonetheless rely on the notion of a continuum upon which activities or events could be considered as experienced in a public or private space (Orgad, 129-133). One of the characteristics of a blog, unlike other forms of online communication such as chat, discussion forums and email, is its predominantly public and openly accessible form. Though many illness bloggers do not seem to seek anonymity or hold back in allowing massive access to their self-expression and personal experience, a tension always seems to be there in the background. Identification through the proper name simply implies potential broader effects of blog writing, a pairing of the personal expressions with the person who expresses them in broader daily interactions and relationships. As already “public” figures, Stephanie Trigg and Leroy Sievers choose to forego anonymity, while Brainhell adopted his alias from the beginning and guarded his anonymity carefully. Each of these bloggers, however, shows signs of grappling with the public character of their site, and the interaction between the blog and their everyday life and relationships. In his etiquette page, Brainhell seems unclear about his readership, noting that his blog is for “friends and soul-mates, and complete strangers too”, but that he has not shared it with his family or all of his friends. He goes on to say: You may not have been invited but you are still welcome here. I made it public so that anyone could read it. Total strangers are welcome. Invited friends are welcome. But of those invited friends, I ask you to ask me before you out me as the blog author, or share the blog with other people who already know me. (Brainhell, 18 Feb. 2004) After his death Ratty took steps to continue to maintain his anonymity, vetting many comments and deleting others to “honor BH’s wishes as he outline in ‘Ettiquett for This Blog”’ (Brainhell, 2 Feb. 2008). In Leroy Sievers’ blog, one post exploring the conflict raised by publicly “sharing” his experiences provoked an interesting discussion. He relays a comment sent to him by a woman named Cherie: I have stage four colorectal cancer with liver mets. This is a strange journey, one I am not entirely sure I can share with my loved ones. I am scared it might rob them of the hope I see in their eyes. The hope which I sometimes don’t believe in. (My Cancer, 26 July 2006) Sievers struggles with this question: “How do you balance the need to talk about what is happening to you with the tears of a close friend when you tell him or her the truth? There’s no simple answer.” The blog, in this sense, seems to offer a more legitimate space for the ongoing, detailed expression of these difficult and affective, and traditionally private experiences. In some posts the privacy of the body and bodily experiences is directly challenged or re-negotiated. Stephanie Trigg was concerned with the effect of the blog on her interactions with colleagues. But another interesting dilemma presents itself to her when she is describing the physical effects of cancer, surgery and radiation treatment on her breast, and forces herself to hold back from comparing with the healthy breast: “it's not a medical breast, so I can't write about it here” (Humanities Researcher, 10 Jan. 2007). One prostate cancer blogger, identified as rdavisjr, seems to have no difficulties expressing the details of a physical intrusion on his “privacy” in the far more open forum of his blog: The pull-around ceiling mounted screen was missing (laundry?), so Kelly was called into the room and told to make a screen with a bed sheet. So here I am with one woman sticking her finger up my ass, while another woman is standing in front of the door holding an outstretched bed sheet under her chin (guess she wanted a view!)The screen was necessary to ensure my privacy in the event someone accidentally came into the room, something they said was a common thing. Well, Kelly peering over that sheet was hardly one of my more private moments in life! (Prostate Cancer Journal, 23 Feb. 2001). ConclusionWhatever emancipatory benefits may be found in expressing the most intimate of experiences and events of a serious illness online, it is the creative act of the blog as self-expression here, in its visceral, comprehensive, continuous timestamped format that dismantles the sense of privacy in the name of recovery. The blog is not the public face of private personal experience, but expressive of the life encompassed by that illness, and encompassing its author’s ongoing personal transformation. The blogs discussed here are not alone in demonstrating these practices. The blog format itself may soon evolve or disappear. Nonetheless, the massification enabled by Internet technologies and applications will continue to transform the ways in which personal experience may be considered private. ReferencesBruns, Axel. Gatewatching: Collaborative Online News Production. New York: Peter Lang, 2005.Bury, Michael. “Chronic Illness as Biographical Disruption.” Sociology of Health and Illness, 4.2 (1982): 167-182.Foucault, Michel. Birth of the Clinic: An Archaeology of Medical Perception. Trans. A.M. Sheridan. London: Tavistock, 1973.———. “Technologies of the Self” Technologies of the Self: A Seminar with Michel Foucault. Ed. Luther H. Martin, Huck Gutman, Patrick M. Hutton, 1988: 16-49. Hardey, Michael. “‘The Story of My Illness’: Personal Accounts of Illness on the Internet.” Health 6.1 (2002): 31-46Kleinman, Arthur, Veena Das, and Margaret Lock, eds. Social Suffering. Berkeley: University of California Press, 1997. Lenhart, Amanda, and Susannah Fox. Bloggers: A Portrait of the Internet’s New Storytellers. Washington: PEW Internet and American Life Project, 2006. Lorde, Audre. The Cancer Journals. San Francisco: Spinsters Ink, 1980.Lovink, Geert. Zero Comments: Blogging and Critical Internet Culture. London: Routledge, 2008. McCullagh, Karen. “Blogging: Self Presentation and Privacy.” Information and Communications Technology Law 17.1 (2008): 3-23. McQuire, Scott. “From Glass Architecture to Big Brother: Scenes from a Cultural History of Transparency.” Cultural Studies Review 9.1 (2003): 103-123.Orgad, Shani. Storytelling Online: Talking Breast Cancer on the Internet. New York: Peter Lang, 2005. Pitts, Victoria. “Illness and Internet Empowerment: Writing and Reading Breast Cancer in Cyberspace.” Health 8.1 (2004): 33-59.Rothenberg, Matthew. “Weblogs, Metadata, and the Semantic Web”, paper presented at the Association of Internet Researchers conference, Toronto, 16 Oct. 2003. ‹http://aoir.org/members/papers42/rothenberg_aoir.pdf›.Singer, Jessica, and George H.S. Singer. “Writing as Physical and Emotional Healing: Findings from Clinical Research.” Handbook of Research on Writing: History, Society, School, Individual, Text. Ed. Charles Bazerman. New York: Lawrence Erlbaum Associates, 2008: 485-498. Sontag, Susan. Illness as Metaphor; And, AIDS and Its Metaphors. London: Penguin, 1991. Trigg, Stephanie. “Life Lessons.” Sunday Age, 10 June 2007. Turkle, Sherry. Life on the Screen: Identity in the Age of the Internet. New York: Simon and Schuster, 1995. Wenger, Etienne. Communities of Practice: Learning, Meaning and Identity. Cambridge: Cambridge University Press, 1998. Wuthnow, Robert. Communities of Discourse: Ideology and Social Structure in the Reformation, the Enlightenment, and European Socialism. Cambridge, MA: Harvard University Press, 1989.BlogsBrainhell. ‹http://brainhell.blogspot.com/›. rdavisjr. Prostate Cancer Journal. ‹http://pcjournal-rrd.blogspot.com/›. Sievers, Leroy. My Cancer. ‹http://www.npr.org/blogs/mycancer/›. Tom’s Road to Recovery. ‹http://tomsrecovery.blog.com/›. Trigg, Stephanie. Humanities Researcher. ‹http://stephanietrigg.blogspot.com/›.

Abstract:

Sphincter I hope my good old asshole holds out 60 years it's been mostly OK Tho in Bolivia a fissure operation survived the altiplano hospital -- a little blood, no polyps, occasionally a small hemorrhoid active, eager, receptive to phallus coke bottle, candle, carrot banana & fingers -- Now AIDS makes it shy, but still eager to serve -- out with the dumps, in with the condom'd orgasmic friend -- still rubbery muscular, unashamed wide open for joy But another 20 years who knows, old folks got troubles everywhere -- necks, prostates, stomachs, joints -- Hope the old hole stays young till death, relax -- March 15, 1986, 1:00 PM, Allen Ginsberg Lucky to the end, Allen Ginsberg (1926-97) achieved his first and final wish. Despite the constipation mentioned occasionally in his later poems, the anus of the grand gay father of the Beats remained relatively healthy until his death while other vital organs failed. Ginsberg, who had also described the erectile misfunction of his penis in mid-to-late career poems, died from a heart attack brought on by liver cancer. While the poet fleshed out references to the male anus in at least fifty of his poems, his "Sphincter" comprises the chronological climax in the development of both his anal and erotic verse. The poem was written just months after the beginning of the global media demonisation of Hollywood star Rock Hudson who was found in late 1985 to be both gay and to have died from AIDS complications. Ginsberg's timely "Sphincter" reflects on the poet's survival as an anally-active gay man through both the pre-AIDS and AIDS eras. While criticism of the (homo)eroticism in Ginsberg's verse ranges from utter denial to near hagiography, overall the significance of his musings on male ani has been avoided. The rather anal-retentive Thomas Merrill claims that, "even sophisticated readers of Ginsberg's poetry are apt to be put off, perhaps bored by, his obsession not only with four-letter words, but with the clinical, strikingly nonerotic descriptions of his homosexuality" (24). For the far less uptight John Tytell, on the other hand, "Ginsberg has always reveled in the divinity of his own sexuality, his homosexuality, adorning his own physical propensities and urging the life of the body on his readers" (245). However, "Sphincter" which is an intensely erotic (albeit anti-Romantic) poem, contains none of the expletives (apart from "asshole") nor divine associations used repeatedly by the poet elsewhere to represent the (homo)eroticised male body, and his anus in particular. Six decades of anal health and recovery aside, Ginsberg packs a suggestive lot into his "Sphincter" with the list of objects wielded during the pre-AIDS period as the means to his erotic end. The term "phallus" -- while suggesting the penis and allo-erotic activity -- may also mean dildoes with certain tactile qualities and anus-fitting shapes and sizes ideal for auto-erotic delight. Indeed, the "coke bottle, candle, carrot/banana & fingers" -- with their smooth to slightly rough texture, stiff to pliable constituency, hard to semi-hard density, and rounded pointedness -- offer more reliable potential for sustained anal stimulation than the occasionally tumescent penis. These objects may answer the decades-old queries in "Iron Horse" (1966): "What can I shove up my ass?" and "Oh if only somebody'd come in &/shove som'in up that ass a mine" (432). The bottle and candle are appropriated from a passage in Ginsberg's signature poem, "Howl" (1955), about the "best [male] minds" (126) of the poet's generation, "who copulated ecstatic and insatiate with a bottle of beer a sweetheart a/package of cigarettes a candle . . . and ended fainting on the wall with/a vision of ultimate cunt and come..." (128). In his "Sphincter", Ginsberg reminisces about the pleasurable insertion into his anus of such props to heterosexual romance. The coke (rather than beer) bottle signifies the contemporary product probably most commodified along with youthful images of (compulsory) heterosexuality in global mass media advertising. Through sodomy with that iconic item of American capitalist cultural imperialism, the poet's jingle valorises his rectum as one of the most fitting and wonderfully subversive "things" that "go better with coke!" As items usually for oral insertion rather than anal penetration, the carrot and banana (and bottle) here play on a subtle metaphor of "receptive"-anus-as-"active"-mouth. Allusions to the (frequently 'cock-hungry') oral-anal configuration of the anus denatus are more explicit in other Ginsberg poems. In "Journal Night Thoughts" (1961) the poet awaits as "a cock throbs I lie still my/mouth in my ass" (271). Ginsberg asks his sexual partner in "Please Master" (1968) to "make me wriggle my rear to eat up the prick trunk", and describes his anus as his "hairmouth" (494). In "Sweet Boy, Gimme Yr Ass" (1974) he desires a young man's "soft mouth asshole" (613). While containing "phallus" and "fingers", there is no tongue nor other oral referent in the rather clean "Sphincter". By contrast, "Iron Horse" (1966) includes the growly request: "Sweet Prince --/open yr ass to my mouth" (433-4). Ginsberg's Pre-AIDS poems frequently celebrate the joining of the uncondomed penis, anus and body fluids in sensational detail. In "This Form of Life Needs Sex" (1961) "joy" comes to mean the very act of joining male anus with penis: "You can joy man to man but the Sperm/comes back in a trickle at dawn/in a toilet on the 45th floor" (285). "Please Master" (1968) includes the demand, "fuck me more violent ... & throb thru five seconds to spurt out your semen heat over & over" (495). In "Love Comes" (1981) the period of the sex act and whether condoms are used is not stated: "I relaxed my inside/loosed the ring in my hide ... He continued to beat/his meat in my meat" (11). The memorial "'What You Up To?'" (1982) recaptures his most scatological unsafe copulation: "That white boy ... one night in 1946/he fucked me naked in the ass/till I smelled brown excrement/staining his cock" (29). While "Sphincter" marks the chronological peak in the development of Ginsberg's erotic poetry, the unbroken line, "unashamed wide open for joy", comprises the structural and thematic climax within the poem itself. This current of anal-erotic joy traces back to "Howl" (1955) with its passage about those men, "who let themselves be fucked in the ass by saintly motorcyclists/and screamed with joy" (128). Ginsberg has said that he wrote "joy" here instead of the expected "pain" as a reaction to the "James Dickey film Deliverance where [receptive anal sex] is supposed to be the worst thing in the world" (Young 103). In the inter-male rape scene in the 1972 film version of Dickey's 1970 novel, actions indicate that one man uses his penis to penetrate the anus of another who is held at gunpoint and ordered to squeal like a pig throughout the assault. Prior to this the raped man is taunted with female names. The consensual 'safe' gay anal joy exhibited by Ginsberg's "Sphincter" counters such homo-, gyno- and porcine-phobic violence. While the anal-erotic jouissance in poems that preceded "Sphincter" was overshadowed at times by non-reproductive aims and scatological themes, "Sphincter" delivers the explicit message that consensual protected anus-around-penis eroticism (particularly for actively "receptive" men) creates penultimate emotional and physical pleasure. The "phallus/coke bottle, candle, carrot/banana & fingers" leave any specified penis out of the pre-AIDS picture. By contrast, "Now" as Ginsberg states "[in the mid-Eighties age of] AIDS", at a time when auto-eroticism, digital/dildo stimulation and other penetrations without penis mean the safest anal sex, the poet himself celebrates contact with the safe sex penis -- "the condom'd/orgasmic friend" -- for which he is "unashamed wide open for joy". The preceding phrase, "out with the dumps", refers to the expulsing of two combined types of "dumps". Firstly, the mental depression about the end of skin-to-skin anus-penis sex and secondly, defecated matter which brings not only physical relief but an anus open to penetration. Unlike "Sphincter", later poems do not specify whether sexual encounters are 'safe' or 'unsafe'. In "The Guest" (1992) the question of whether condoms are used is open but the consensual status of the encounter is stressed: "I ask permission, he says 'yes,'/I pull his hips up, hold his breast,/spurt my loves deep in his bum" (78). Other poems such as "Violent Collaborations" (written with Peter Hale, 1992) humorously relish sadomasochistic and coprophilic pleasure: "Fuck me & fist me/in your army enlist me/Poop on me when you're at ease" (92). Again there is no specification that condoms are used nor that there is 'unsafe' contact. With its "shy" but "eager" anus and "condom'd/orgasmic friend", "Sphincter" marks not so much an end to 'unsafe' sex as an end to the specification of 'safe' sex in Ginsberg's poetry. No Ginsberg poem specifically addresses his penis (and/or testicles) in the way that "Sphincter" is devoted to his anus. In his poetry he does not epitomise himself as any libidinous body part other than his anal hole. In "Please Master" (1968) the poet conflates his anus with his selfhood when exclaiming: "touch your cock head to my wrinkled self-hole/... please please master fuck me again" (494-5), and "Please call me ... a wet asshole" (495). In Ginsberg's "Sphincter" moreover, his anus synecdochically represents not only his whole person but a type of gay Everyman. His sphincter is "active" and "receptive", "old" and "young", "shy" and "unashamed", and "rubbery" and "muscular". These antithetical qualities also characterise the male body idealised in gay culture (in reaction to media images of decaying 'plague victims') during the AIDS-era. This body is sexually 'versatile' (as both 'bottom' and 'top'), boyish-looking but sexually mature, introspective but assertively 'out', and physically toned but flexible. The "rubbery muscular" qualities of Ginsberg's anus are focal, because -- apart from the "blood" and "hemorrhoid" which evoke colours and shapes -- "Sphincter" contains no other physical representations of his anal orifice nor any of the myriad hyperbolic metaphorisations found in his earlier visceral verses. Anal-roseate associations appear in "A Methedrine Vision in Hollywood" (1965) and "Hiway Poesy" (1966). In the first there is wind of the floral: "one-eyed sparkle, giant glint, any tiny fart/or rose-whiff before roses were/Thought Impossible" (381). In the second, the anus-as-flower manifests through ambiguous layers. The word "rose" may be read as noun, adjective or verb: "Oh that I were young again and the skin in my anus folds/rose" (386). "Kaddish" (1959) draws on topographical metaphors: "a mortal avalanche, whole mountains of homosexuality, Matter-/horns of Cock, Grand Canyons of Asshole" (214). Manifestations of the anus as a cosmic portal or eye appear in several poems, but not in "Sphincter". Ginsberg draws on Yogic beliefs to cast the anus as the source of the enlightening kundalini in "Iron Horse" (1966): "Muladhara sphincter up thru/mind aura/Sahasrarapadma promise/another universe" (435). In the only reference to the anus in the copious footnotes to his Collected Poems, the editors explain 'Muladhara Sphincter' simplisticly as "anal chakra (one of seven bodily centers of spirit energy in Orient [sic] yoga practice)", while 'Sahasrarapadma' is described in detail as "Seventh chakra, 'thousand-petal lotus' at skulltop" (781). Ginsberg, however, seems to have placed his stress on these first and last chakras more equally or in reverse. In "Scatalogical Observations" (1997) he declares, "The Ass knows more than the mind knows" (85-6). In "Journal Night Thoughts" (1961) the poet's anus comprises a universal 'third eye' through which he comes to 'know' and 'see'. This anus/eye in the formulation of "the eye in the center of the moving/mandala -- the/eye in the hand/the eye in the asshole" (267) is later eroticised as "I prostrate my sphincter with my eyes in/the pillow" (271). As we have seen, Ginsberg's erotic poetry frequently features imagery of the sexual orifice that is beyond any man's individual scope and culturally most proscribed from public view. While many passages in his verse evoke the male anus as a subject worthy of versification and visualisation, Ginsberg's "Sphincter" comprises an ode which literally and literarily presents the poet's anus to the audience as a poetic vision in itself. The succinctly anti-analphobic and anti-homophobic "Sphincter" finely balances critical aspects of the ars poetica. Devoid of signature tropes such as the anus/mouth, anus/I and anus/eye, "Sphincter" with its relative lack of euphemism and clever mix of metonymy and metaphor nonetheless merges antithetical themes to relay a profound spiritual message. The poet's ode to his ageing anus matter-of-factly and humorously revels in memories of auto- and allo-erotic 'phallo-morphous' perversity and celebrates the anal-erotic joy in being 'fucked safely' as a personal and political act. As this millennium closes, we could do worse in our 'anal-retentive' culture than following one of the century's wisest poetic ends: "till death, relax". References Deliverance. Dir. John Boorman. U.S.A.: Warner Bros., 1972. Dickey, James. Deliverance. Boston, MA: Houghton Mifflin, 1970. Ginsberg, Allen. Collected Poems 1947-1980. New York: Viking Penguin, 1985. ---. Cosmopolitan Greetings: Poems 1986-1992. London: Penguin, 1994. ---. Death and Fame: Poems 1993-1997. London: Penguin, 1999. ---. White Shroud: Poems 1980-1985. New York: Harper and Row, 1986. Merrill, Thomas F. Allen Ginsberg. Boston, MA: Twayne, 1988. Tytell, John. Naked Angels: The Lives and Literature of the Beat Generation. New York: McGraw-Hill, 1976. Young, Allen. "Allen Young Interviews Allen Ginsberg." 1973. Gay Sunshine Interviews. Ed. Winston Leyland. San Francisco: Gay Sunshine Press, 1978: 96-128. Citation reference for this article MLA style: Simon-Astley Scholfield. "A Poetic End: Allen Ginsberg's 'Sphincter'." M/C: A Journal of Media and Culture 2.8 (1999). [your date of access] <http://www.uq.edu.au/mc/9912/sphincter.php>. Chicago style: Simon-Astley Scholfield, "A Poetic End: Allen Ginsberg's 'Sphincter'," M/C: A Journal of Media and Culture 2, no. 8 (199x), <http://www.uq.edu.au/mc/9912/sphincter.php> ([your date of access]). APA style: Simon-Astley Scholfield. (1999) A poetic end: Allen Ginsberg's "Sphincter". M/C: A Journal of Media and Culture 2(8). <http://www.uq.edu.au/mc/9912/sphincter.php> ([your date of access]).

Abstract:

IntroductionMusically-inclined people often speak about the soundtrack of their life, with certain songs indelibly linked to a specific moment. When hearing a particular song, it can “easily evoke a whole time and place, distant feelings and emotions, and memories of where we were, and with whom” (Lewis 135). Music has the ability to provide maps to real and imagined spaces, positioning people within a larger social environment where songs “are never just a song, but a connection, a ticket, a pass, an invitation, a node in a complex network” (Kun 3). When someone is lost in the music, they can find themselves transported somewhere else entirely without physically moving. This can be a blessing in some situations, for example, while living in a disaster zone, when almost any other time or place can seem better than the here and now. The city of Christchurch, New Zealand was hit by a succession of damaging earthquakes beginning with a magnitude 7.1 earthquake in the early hours of 4 September 2010. The magnitude 6.3 earthquake of 22 February 2011, although technically an aftershock of the September earthquake, was closer and shallower, with intense ground acceleration that caused much greater damage to the city and its people (“Scientists”). It was this February earthquake that caused the total or partial collapse of many inner city buildings, and claimed the lives of 185 people. Everybody in Christchurch lost someone or something that day: their house or job; family members, friends, or colleagues; the city as they knew it; or their normal way of life. The broken central city was quickly cordoned off behind fences, with the few entry points guarded by local and international police and armed military personnel.In the aftermath of a disaster, circumstances and personal attributes will influence how people react, think and feel about the experience. Surviving a disaster is more than not dying, “survival is to do with quality of life [and] involves progressing from the event and its aftermath, and transforming the experience” (Hodgkinson and Stewart 2). In these times of heightened stress, music can be a catalyst for sharing and expressing emotions, connecting people and communities, and helping them make sense of what has happened (Carr 38; Webb 437). This article looks at some of the ways that popular songs and musical memories helped residents of a broken city remember the past and come to terms with the present.BackgroundExisting songs can take on new significance after a catastrophic event, even without any alteration. Songs such as Do You Know What It Means to Miss New Orleans? and Prayer for New Orleans have been given new emotional layers by those who were displaced or affected by Hurricane Katrina (Cooper 265; Sullivan 15). A thirty year-old song by Randy Newman, Louisiana, 1927, became something of “a contemporary anthem, its chorus – ‘Louisiana, they’re trying to wash us away’ – bearing new relevance” (Blumenfeld 166). Contemporary popular songs have also been re-mixed or revised after catastrophic events, either by the original artist or by others. Elton John’s Candle in the Wind and Beyonce’s Halo have each been revised twice by the artist after tragedy and disaster (Doyle; McAlister), while radio stations in the United States have produced commemorative versions of popular songs to mark tragedies and their anniversaries (Beaumont-Thomas; Cantrell). The use and appreciation of music after disaster is a reminder that popular music is fluid, in that it “refuses to provide a uniform or static text” (Connell and Gibson 3), and can simultaneously carry many different meanings.Music provides a soundtrack to daily life, creating a map of meaning to the world around us, or presenting a reminder of the world as it once was. Tia DeNora explains that when people hear a song that was once heard in, and remains associated with, a particular time and place, it “provides a device for unfolding, for replaying, the temporal structure of that moment, [which] is why, for so many people, the past ‘comes alive’ to its soundtrack” (67). When a community is frequently and collectively casting their minds back to a time before a catastrophic change, a sense of community identity can be seen in the use of, and reaction to, particular songs. Music allows people to “locate themselves in different imaginary geographics at one and the same time” (Cohen 93), creating spaces for people to retreat into, small ‘audiotopias’ that are “built, imagined, and sustained through sound, noise, and music” (Kun 21). The use of musical escape holes is prevalent after disaster, as many once-familiar spaces that have changed beyond recognition or are no longer able to be physically visited, can be easily imagined or remembered through music. There is a particular type of longing expressed by those who are still at home and yet cannot return to the home they knew. Whereas nostalgia is often experienced by people far from home who wish to return or those enjoying memories of a bygone era, people after disaster often encounter a similar nostalgic feeling but with no change in time or place: a loss without leaving. Glenn Albrecht coined the term ‘solastalgia’ to represent “the form of homesickness one experiences when one is still at home” (35). This sense of being unable to find solace in one’s home environment can be brought on by natural disasters such as fire, flood, earthquakes or hurricanes, or by other means like war, mining, climate change or gentrification. Solastalgia is often felt most keenly when people experience the change first-hand and then have to adjust to life in a totally changed environment. This can create “chronic distress of a solastalgic kind [that] would persist well after the acute phase of post-traumatic distress” (Albrecht 36). Just as the visible, physical effects of disaster last for years, so too do the emotional effects, but there have been many examples of how the nostalgia inherent in a shared popular music soundtrack has eased the pain of solastalgia for a community that is hurting.Pop Songs and Nostalgia in ChristchurchIn September 2011, one year after the initial earthquake, the Bank of New Zealand (BNZ) announced a collaboration with Christchurch hip hop artist, Scribe, to remake his smash hit, Not Many, for charity. Back in 2003, Not Many debuted at number five on the New Zealand music charts, where it spent twelve weeks at number one and was crowned ‘Single of the Year’ (Sweetman, On Song 164). The punchy chorus heralded Scribe as a force to be reckoned with, and created a massive imprint on New Zealand popular culture with the line: “How many dudes you know roll like this? Not many, if any” (Scribe, Not Many). Music critic, Simon Sweetman, explains how “the hook line of the chorus [is now] a conversational aside that is practically unavoidable when discussing amounts… The words ‘not many’ are now truck-and-trailered with ‘if any’. If you do not say them, you are thinking them” (On Song 167). The strong links between artist and hometown – and the fact it is an enduringly catchy song – made it ideal for a charity remake. Reworded and reworked as Not Many Cities, the chorus now asks: “How many cities you know roll like this?” to which the answer is, of course, “not many, if any” (Scribe/BNZ, Not Many Cities). The remade song entered the New Zealand music charts at number 36 and the video was widely shared through social media but not all reception was positive. Parts of the video were shot in the city’s Red Zone, the central business district that was cordoned off from public access due to safety concerns. The granting of special access outraged some residents, with letters to the editor and online commentary expressing frustration that celebrities were allowed into the Red Zone to shoot a music video while those directly affected were not allowed in to retrieve essential items from residences and business premises. However, it is not just the Red Zone that features: the video switches between Scribe travelling around the broken inner city on the back of a small truck and lingering shots of carefully selected people, businesses, and groups – all with ties to the BNZ as either clients or beneficiaries of sponsorship. In some ways, Not Many Cities comes across like just another corporate promotional video for the BNZ, albeit with more emotion and a better soundtrack than usual. But what it has bequeathed is a snapshot of the city as it was in that liminal time: a landscape featuring familiar buildings, spaces and places which, although damaged, was still a recognisable version of the city that existed before the earthquakes.Before Scribe burst onto the music scene in the early 2000s, the best-known song about Christchurch was probably Christchurch (in Cashel St. I wait), an early hit from the Exponents (Mitchell 189). Initially known as the Dance Exponents, the group formed in Christchurch in the early 1980s and remained local and national favourites thanks to a string of hits Sweetman refers to as “the question-mark songs,” such as Who Loves Who the Most?, Why Does Love Do This to Me?, and What Ever Happened to Tracey? (Best Songwriter). Despite disbanding in 1999, the group re-formed to be the headline act of ‘Band Together’—a multi-artist, outdoor music event organised for the benefit of Christchurch residents by local musician, Jason Kerrison, formerly of the band OpShop. Attended by over 140,000 people (Anderson, Band Together), this nine-hour event brought joy and distraction to a shaken and stressed populace who, at that point in time (October 2010), probably thought the worst was over.The Exponents took the stage last, and chose Christchurch (in Cashel St. I Wait) as their final number. Every musician involved in the gig joined them on stage and the crowd rose to their feet, singing along with gusto. A local favourite since its release in 1985, the verses may have been a bit of a mumble for some, but the chorus rang out loud and clear across the park: Christchurch, In Cashel Street I wait,Together we will be,Together, together, together, One day, one day, one day,One day, one day, one daaaaaay! (Exponents, “Christchurch (in Cashel St. I Wait)”; lyrics written as sung)At that moment, forming an impromptu community choir of over 100,000 people, the audience was filled with hope and faith that those words would come true. Life would go on and people would gather together in Cashel Street and wait for normality to return, one day. Later the following year, the opening of the Re:Start container mall added an extra layer of poignancy to the song lyrics. Denied access to most of the city’s CBD, that one small part of Cashel Street now populated with colourful shipping containers was almost the only place in central Christchurch where people could wait. There are many music videos that capture the central city of Christchurch as it was in decades past. There are some local classics, like The Bats’ Block of Wood and Claudine; The Shallows’ Suzanne Said; Moana and the Moahunters’ Rebel in Me; and All Fall Down’s Black Gratten, which were all filmed in the 1980s or early 1990s (Goodsort, Re-Live and More Music). These videos provide many flashback moments to the city as it was twenty or thirty years ago. However, one post-earthquake release became an accidental musical time capsule. The song, Space and Place, was released in February 2013, but both song and video had been recorded not long before the earthquakes occurred. The song was inspired by the feelings experienced when returning home after a long absence, and celebrates the importance of the home town as “a place that knows you as well as you know it” (Anderson, Letter). The chorus features the line, “streets of common ground, I remember, I remember” (Franklin, Mayes, and Roberts, Space and Place), but it is the video, showcasing many of the Christchurch places and spaces only recently lost to the earthquakes, that tugs at people’s heartstrings. The video for Space and Place sweeps through the central city at night, with key heritage buildings like the Christ Church Cathedral, and the Catholic Basilica lit up against the night sky (both are still damaged and inaccessible). Producer and engineer, Rob Mayes, describes the video as “a love letter to something we all lost [with] the song and its lyrics [becoming] even more potent, poignant, and unexpectedly prescient post quake” (“Songs in the Key”). The Arts Centre features prominently in the footage, including the back alleys and archways that hosted all manner of night-time activities – sanctioned or otherwise – as well as many people’s favourite hangout, the Dux de Lux (the Dux). Operating from the corner of the Arts Centre site since the 1970s, the Dux has been described as “the city’s common room” and “Christchurch’s beating heart” by musicians mourning its loss (Anderson, Musicians). While the repair and restoration of some parts of the Arts Centre is currently well advanced, the Student Union building that once housed this inner-city social institution is not slated for reopening until 2019 (“Rebuild and Restore”), and whether the Dux will be welcomed back remains to be seen. Empty Spaces, Missing PlacesA Facebook group, ‘Save Our Dux,’ was created in early March 2011, and quickly filled with messages and memories from around the world. People wandered down memory lane together as they reminisced about their favourite gigs and memorable occasions, like the ‘Big Snow’ of 1992 when the Dux served up mulled wine and looked more like a ski chalet. Memories were shared about the time when the music video for the Dance Exponents’ song, Victoria, was filmed at the Dux and the Art Deco-style apartment building across the street. The reminiscing continued, establishing and strengthening connections, with music providing a stepping stone to shared experience and a sense of community. Physically restricted from visiting a favourite social space, people were converging in virtual hangouts to relive moments and remember places now cut off by the passing of time, the falling of bricks, and the rise of barrier fences.While waiting to find out whether the original Dux site can be re-occupied, the business owners opened new venues that housed different parts of the Dux business (live music, vegetarian food, and the bars/brewery). Although the fit-out of the restaurant and bars capture a sense of the history and charm that people associate with the Dux brand, the empty wasteland and building sites that surround the new Dux Central quickly destroy any illusion of permanence or familiarity. Now that most of the quake-damaged buildings have been demolished, the freshly-scarred earth of the central city is like a child’s gap-toothed smile. Wandering around the city and forgetting what used to occupy an empty space, wanting to visit a shop or bar before remembering it is no longer there, being at the Dux but not at the Dux – these are the kind of things that contributed to a feeling that local music writer, Vicki Anderson, describes as “lost city syndrome” (“Lost City”). Although initially worried she might be alone in mourning places lost, other residents have shared similar experiences. In an online comment on the article, one local resident explained how there are two different cities fighting for dominance in their head: “the new keeps trying to overlay the old [but] when I’m not looking at pictures, or in seeing it as it is, it’s the old city that pushes its way to the front” (Juniper). Others expressed relief that they were not the only ones feeling strangely homesick in their own town, homesick for a place they never left but that had somehow left them.There are a variety of methods available to fill the gaps in both memories and cityscape. The Human Interface Technology Laboratory New Zealand (HITLab), produced a technological solution: interactive augmented reality software called CityViewAR, using GPS data and 3D models to show parts of the city as they were prior to the earthquakes (“CityViewAR”). However, not everybody needed computerised help to remember buildings and other details. Many people found that, just by listening to a certain song or remembering particular gigs, it was not just an image of a building that appeared but a multi-sensory event complete with sound, movement, smell, and emotion. In online spaces like the Save Our Dux group, memories of favourite bands and songs, crowded gigs, old friends, good times, great food, and long nights were shared and discussed, embroidering a rich and colourful tapestry about a favourite part of Christchurch’s social scene. ConclusionMusic is strongly interwoven with memory, and can recreate a particular moment in time and place through the associations carried in lyrics, melody, and imagery. Songs can spark vivid memories of what was happening – when, where, and with whom. A song shared is a connection made: between people; between moments; between good times and bad; between the past and the present. Music provides a soundtrack to people’s lives, and during times of stress it can also provide many benefits. The lyrics and video imagery of songs made in years gone by have been shown to take on new significance and meaning after disaster, offering snapshots of times, people and places that are no longer with us. Even without relying on the accompanying imagery of a video, music has the ability to recreate spaces or relocate the listener somewhere other than the physical location they currently occupy. This small act of musical magic can provide a great deal of comfort when suffering solastalgia, the feeling of homesickness one experiences when the familiar landscapes of home suddenly change or disappear, when one has not left home but that home has nonetheless gone from sight. The earthquakes (and the demolition crews that followed) have created a lot of empty land in Christchurch but the sound of popular music has filled many gaps – not just on the ground, but also in the hearts and lives of the city’s residents. ReferencesAlbrecht, Glenn. “Solastalgia.” Alternatives Journal 32.4/5 (2006): 34-36.Anderson, Vicki. “A Love Letter to Christchurch.” Stuff 22 Feb. 2013. <http://www.stuff.co.nz/the-press/christchurch-life/art-and-stage/christchurch-music/8335491/A-love-letter-to-Christchurch>.———. “Band Together.” Supplemental. The Press. 25 Oct. 2010: 1. ———. “Lost City Syndrome.” Stuff 19 Mar. 2012. <http://www.stuff.co.nz/the-press/opinion/blogs/rock-and-roll-mother/6600468/Lost-city-syndrome>.———. “Musicians Sing Praises in Call for ‘Vital Common Room’ to Reopen.” The Press 7 Jun. 2011: A8. Beaumont-Thomas, Ben. “Exploring Musical Responses to 9/11.” Guardian 9 Sep. 2011. <https://www.theguardian.com/music/musicblog/2011/sep/09/musical-responses-9-11>. Blumenfeld, Larry. “Since the Flood: Scenes from the Fight for New Orleans Jazz Culture.” Pop When the World Falls Apart. Ed. Eric Weisbard. Durham: Duke UP, 2012. 145-175.Cantrell, Rebecca. “These Emotional Musical Tributes Are Still Powerful 20 Years after Oklahoma City Bombing.” KFOR 18 Apr. 2015. <http://kfor.com/2015/04/18/these-emotional-musical-tributes-are-still-powerful-20-years-after-oklahoma-city-bombing/>.Carr, Revell. ““We Never Will Forget”: Disaster in American Folksong from the Nineteenth Century to September 11, 2011.” Voices 30.3/4 (2004): 36-41. “CityViewAR.” HITLab NZ, ca. 2011. <http://www.hitlabnz.org/index.php/products/cityviewar>. Cohen, Sara. Decline, Renewal and the City in Popular Music Culture: Beyond the Beatles. Hampshire: Ashgate, 2007. Connell, John, and Chris Gibson. Soundtracks: Popular Music, Identity and Place. London: Routledge, 2003.Cooper, B. Lee. “Right Place, Wrong Time: Discography of a Disaster.” Popular Music and Society 31.2 (2008): 263-4. DeNora, Tia. Music in Everyday Life. Cambridge: Cambridge UP, 2000. Doyle, Jack. “Candle in the Wind, 1973 & 1997.” Pop History Dig 26 Apr. 2008. <http://www.pophistorydig.com/topics/candle-in-the-wind1973-1997/>. Goodsort, Paul. “More Music Videos Set in Pre-Quake(s) Christchurch.” Mostly within Human Hearing Range. 3 Dec. 2011. <http://humanhearingrange.blogspot.co.nz/2011/12/more-music-videos-set-in-pre-quakes.html>.———. “Re-Live the ‘Old’ Christchurch in Music Videos.” Mostly within Human Hearing Range. 7 Nov. 2011. <http://humanhearingrange.blogspot.co.nz/2011/11/re-live-old-christchurch-in-music.html>. Hodgkinson, Peter, and Michael Stewart. Coping with Catastrophe: A Handbook of Disaster Management. London: Routledge, 1991. Juniper. “Lost City Syndrome.” Comment. Stuff 19 Mar. 2012. <http://www.stuff.co.nz/the-press/opinion/blogs/rock-and-roll-mother/6600468/Lost-city-syndrome>.Kun, Josh. Audiotopia. Berkeley: U of California P, 2005. Lewis, George H. “Who Do You Love? The Dimensions of Musical Taste.” Popular Music and Communication. Ed. James Lull. London: Sage, 1992. 134-151. Mayes, Rob. “Songs in the Key-Space and Place.” Failsafe Records. Mar. 2013. <http://www.failsaferecords.com/>.McAlister, Elizabeth. “Soundscapes of Disaster and Humanitarianism.” Small Axe 16.3 (2012): 22-38. Mitchell, Tony. “Flat City Sounds Redux: A Musical ‘Countercartography’ of Christchurch.” Home, Land and Sea: Situating Music in Aotearoa New Zealand. Eds. Glenda Keam and Tony Mitchell. Auckland: Pearson, 2011. 176-194.“Rebuild and Restore.” Arts Centre, ca. 2016. <http://www.artscentre.org.nz/rebuild---restore.html>.“Scientists Find Rare Mix of Factors Exacerbated the Christchurch Quake.” GNS [Institute of Geological and Nuclear Sciences Limited] Science 16 Mar. 2011. <http://www.gns.cri.nz/Home/News-and-Events/Media-Releases/Multiple-factors>. Sullivan, Jack. “In New Orleans, Did the Music Die?” Chronicle of Higher Education 53.3 (2006): 14-15. Sweetman, Simon. “New Zealand’s Best Songwriter.” Stuff 18 Feb. 2011. <http://www.stuff.co.nz/entertainment/blogs/blog-on-the-tracks/4672532/New-Zealands-best-songwriter>.———. On Song. Auckland: Penguin, 2012.Webb, Gary. “The Popular Culture of Disaster: Exploring a New Dimension of Disaster Research.” Handbook of Disaster Research. Eds. Havidan Rodriguez, Enrico Quarantelli and Russell Dynes. New York: Springer, 2006. 430-440. MusicAll Fall Down. “Black Gratten.” Wallpaper Coat [EP]. New Zealand: Flying Nun, 1987.Bats. “Block of Wood” [single]. New Zealand: Flying Nun, 1987. ———. “Claudine.” And Here’s Music for the Fireside [EP]. New Zealand: Flying Nun, 1985. Beyonce. “Halo.” I Am Sacha Fierce. USA: Columbia, 2008.Charlie Miller. “Prayer for New Orleans.” Our New Orleans. USA: Nonesuch, 2005. (Dance) Exponents. “Christchurch (in Cashel St. I Wait).” Expectations. New Zealand: Mushroom Records, 1985.———. “Victoria.” Prayers Be Answered. New Zealand: Mushroom, 1982. ———. “What Ever Happened to Tracy?” Something Beginning with C. New Zealand: PolyGram, 1992.———. “Who Loves Who the Most?” Something Beginning with C. New Zealand: PolyGram, 1992.———. “Why Does Love Do This to Me?” Something Beginning with C. New Zealand: PolyGram, 1992.Elton John. “Candle in the Wind.” Goodbye Yellow Brick Road. United Kingdom: MCA, 1973.Franklin, Leigh, Rob Mayes, and Mark Roberts. “Space and Place.” Songs in the Key. New Zealand: Failsafe, 2013. Louis Armstrong and Billie Holiday. “Do You Know What It Means to Miss New Orleans.” New Orleans Original Motion Picture Soundtrack. USA: Giants of Jazz, 1983 (originally recorded 1947). Moana and the Moahunters. “Rebel in Me.” Tahi. New Zealand: Southside, 1993.Randy Newman. “Louisiana 1927.” Good Old Boys. USA: Reprise, 1974.Scribe. “Not Many.” The Crusader. New Zealand: Dirty Records/Festival Mushroom, 2003.Scribe/BNZ. “Not Many Cities.” [charity single]. New Zealand, 2011. The Shallows. “Suzanne Said.” [single]. New Zealand: self-released, 1985.

Abstract:

Special Care NoticeThis article discusses trauma and violence inflicted upon the Indigenous peoples of Tasmania through the processes of colonisation. Content within this article may be distressing to some readers. IntroductionThis article looks briefly at the collection, consultation, and digital sharing of stories essential to the histories of the First Nations peoples of Australia. Focusing on materials held in Sydney, New South Wales two case studies—the object known as the Proclamation Board and the George Augustus Robinson Papers—explore how materials can be shared with Aboriginal peoples of the region now known as Tasmania. Specifically, the authors of this article (a Palawa man and an Australian woman of European descent) ask how can the idea of the privileging of Indigenous voices, within Eurocentric cultural collections, be transformed from rhetoric to reality? Moreover, how can we navigate this complex work, that is made even more problematic by distance, through the utilisation of knowledge networks which are geographically isolated from the collections holding stories crucial to Indigenous communities? In seeking to answer these important questions, this article looks at how cultural, emotional, and intellectual ownership can be divested from the physical ownership of a collection in a way that repatriates—appropriately and sensitively—stories of Aboriginal Australia and of colonisation. Holding Stories, Not Always Our OwnCultural institutions, including libraries, have, in recent years, been drawn into discussions centred on the notion of digital disruption and “that transformative shift which has seen the ongoing realignment of business resources, relationships, knowledge, and value both facilitating the entry of previously impossible ideas and accelerating the competitive impact of those same impossible ideas” (Franks and Ensor n.p.). As Molly Brown has noted, librarians “are faced, on a daily basis, with rapidly changing technology and the ways in which our patrons access and use information. Thus, we need to look at disruptive technologies as opportunities” (n.p.). Some innovations, including the transition from card catalogues to online catalogues and the provision of a wide range of electronic resources, are now considered to be business as usual for most institutions. So, too, the digitisation of great swathes of materials to facilitate access to collections onsite and online, with digitising primary sources seen as an intermediary between the pillars of preserving these materials and facilitating access for those who cannot, for a variety of logistical and personal reasons, travel to a particular repository where a collection is held.The result has been the development of hybrid collections: that is, collections that can be accessed in both physical and digital formats. Yet, the digitisation processes conducted by memory institutions is often selective. Limited resources, even for large-scale digitisation projects usually only realise outcomes that focus on making visually rich, key, or canonical documents, or those documents that are considered high use and at risk, available online. Such materials are extracted from the larger full body of records while other lesser-known components are often omitted. Digitisation projects therefore tend to be devised for a broader audience where contextual questions are less central to the methodology in favour of presenting notable or famous documents online only. Documents can be profiled as an exhibition separate from their complete collection and, critically, their wider context. Libraries of course are not neutral spaces and this practice of (re)enforcing the canon through digitisation is a challenge that cultural institutions, in partnerships, need to address (Franks and Ensor n.p.). Indeed, our digital collections are as affected by power relationships and the ongoing impacts of colonisation as our physical collections. These power relationships can be seen through an organisation’s “processes that support acquisitions, as purchases and as the acceptance of artefacts offered as donations. Throughout such processes decisions are continually made (consciously and unconsciously) that affect what is presented and actively promoted as the official history” (Thorpe et al. 8). While it is important to acknowledge what we do collect, it is equally important to look, too, at what we do not collect and to consider how we continually privilege and exclude stories. Especially when these stories are not always our own, but are held, often as accidents of collecting. For example, an item comes in as part of a larger suite of materials while older, city-based institutions often pre-date regional repositories. An essential point here is that cultural institutions can often become comfortable in what they collect, building on existing holdings. This, in turn, can lead to comfortable digitisation. If we are to be truly disruptive, we need to embrace feeling uncomfortable in what we do, and we need to view digitisation as an intervention opportunity; a chance to challenge what we ‘know’ about our collections. This is especially relevant in any attempts to decolonise collections.Case Study One: The Proclamation BoardThe first case study looks at an example of re-digitisation. One of the seven Proclamation Boards known to survive in a public collection is held by the Mitchell Library, State Library of New South Wales, having been purchased from Tasmanian collector and photographer John Watt Beattie (1859–1930) in May 1919 for £30 (Morris 86). Why, with so much material to digitise—working in a program of limited funds and time—would the Library return to an object that has already been privileged? Unanswered questions and advances in digitisation technologies, created a unique opportunity. For the First Peoples of Van Diemen’s Land (now known as Tasmania), colonisation by the British in 1803 was “an emotionally, intellectually, physically, and spiritually confronting series of encounters” (Franks n.p.). Violent incidents became routine and were followed by a full-scale conflict, often referred to as the Black War (Clements 1), or more recently as the Tasmanian War, fought from the 1820s until 1832. Image 1: Governor Arthur’s Proclamation to the Aborigines, ca. 1828–1830. Image Credit: Mitchell Library, State Library of New South Wales, Call No.: SAFE / R 247.Behind the British combatants were various support staff, including administrators and propagandists. One of the efforts by the belligerents, behind the front line, to win the war and bring about peace was the production of approximately 100 Proclamation Boards. These four-strip pictograms were the result of a scheme introduced by Lieutenant Governor George Arthur (1784–1854), on the advice of Surveyor General George Frankland (1800–38), to communicate that all are equal under the rule of law (Arthur 1). Frankland wrote to Arthur in early 1829 to suggest these Proclamation Boards could be produced and nailed to trees (Morris 84), as a Eurocentric adaptation of a traditional method of communication used by Indigenous peoples who left images on the trunks of trees. The overtly stated purpose of the Boards was, like the printed proclamations exhorting peace, to assert, all people—black and white—were equal. That “British Justice would protect” everyone (Morris 84). The first strip on each of these pictogram Boards presents Indigenous peoples and colonists living peacefully together. The second strip shows “a conciliatory handshake between the British governor and an Aboriginal ‘chief’, highly reminiscent of images found in North America on treaty medals and anti-slavery tokens” (Darian-Smith and Edmonds 4). The third and fourth strips depict the repercussions for committing murder (or, indeed, any significant crime), with an Indigenous man hanged for spearing a colonist and a European man hanged for shooting an Aboriginal man. Both men executed in the presence of the Lieutenant Governor. The Boards, oil on Huon pine, were painted by “convict artists incarcerated in the island penal colony” (Carroll 73).The Board at the State Library of New South Wales was digitised quite early on in the Library’s digitisation program, it has been routinely exhibited (including for the Library’s centenary in 2010) and is written about regularly. Yet, many questions about this small piece of timber remain unanswered. For example, some Boards were outlined with sketches and some were outlined with pouncing, “a technique [of the Italian Renaissance] of pricking the contours of a drawing with a pin. Charcoal was then dusted on to the drawing” (Carroll 75–76). Could such a sketch or example of pouncing be seen beneath the surface layers of paint on this particular Board? What might be revealed by examining the Board more closely and looking at this object in different ways?An important, but unexpected, discovery was that while most of the pigments in the painting correlate with those commonly available to artists in the early nineteenth century there is one outstanding anomaly. X-ray analysis revealed cadmium yellow present in several places across the painting, including the dresses of the little girls in strip one, uniform details in strip two, and the trousers worn by the settler men in strips three and four (Kahabka 2). This is an extraordinary discovery, as cadmium yellows were available “commercially as an artist pigment in England by 1846” and were shown by “Winsor & Newton at the 1851 Exhibition held at the Crystal Palace, London” (Fiedler and Bayard 68). The availability of this particular type of yellow in the early 1850s could set a new marker for the earliest possible date for the manufacture of this Board, long-assumed to be 1828–30. Further, the early manufacture of cadmium yellow saw the pigment in short supply and a very expensive option when compared with other pigments such as chrome yellow (the darker yellow, seen in the grid lines that separate the scenes in the painting). This presents a clearly uncomfortable truth in relation to an object so heavily researched and so significant to a well-regarded collection that aims to document much of Australia’s colonial history. Is it possible, for example, the Board has been subjected to overpainting at a later date? Or, was this premium paint used to produce a display Board that was sent, by the Tasmanian Government, to the 1866 Intercolonial Exhibition in Melbourne? In seeking to see the finer details of the painting through re-digitisation, the results were much richer than anticipated. The sketch outlines are clearly visible in the new high-resolution files. There are, too, details unable to be seen clearly with the naked eye, including this warrior’s headdress and ceremonial scarring on his stomach, scars that tell stories “of pain, endurance, identity, status, beauty, courage, sorrow or grief” (Australian Museum n.p.). The image of this man has been duplicated and distributed since the 1830s, an anonymous figure deployed to tell a settler-centric story of the Black, or Tasmanian, War. This man can now be seen, for the first time nine decades later, to wear his own story. We do not know his name, but he is no longer completely anonymous. This image is now, in some ways, a portrait. The State Library of New South Wales acknowledges this object is part of an important chapter in the Tasmanian story and, though two Boards are in collections in Tasmania (the Tasmanian Museum and Art Gallery, Hobart and the Queen Victoria Museum and Art Gallery, Launceston), each Board is different. The Library holds an important piece of a large and complex puzzle and has a moral obligation to make this information available beyond its metropolitan location. Digitisation, in this case re-digitisation, is allowing for the disruption of this story in sparking new questions around provenance and for the relocating of a Palawa warrior to a more prominent, perhaps even equal role, within a colonial narrative. Image 2: Detail, Governor Arthur’s Proclamation to the Aborigines, ca. 1828–1830. Image Credit: Mitchell Library, State Library of New South Wales, Call No.: SAFE / R 247.Case Study Two: The George Augustus Robinson PapersThe second case study focuses on the work being led by the Indigenous Engagement Branch at the State Library of New South Wales on the George Augustus Robinson (1791–1866) Papers. In 1829, Robinson was granted a government post in Van Diemen’s Land to ‘conciliate’ with the Palawa peoples. More accurately, Robinson’s core task was dispossession and the systematic disconnection of the Palawa peoples from their Country, community, and culture. Robinson was a habitual diarist and notetaker documenting much of his own life as well as the lives of those around him, including First Nations peoples. His extensive suite of papers represents a familiar and peculiar kind of discomfort for Aboriginal Australians, one in which they are forced to learn about themselves through the eyes and words of their oppressors. For many First Nations peoples of Tasmania, Robinson remains a violent and terrible figure, but his observations of Palawa culture and language are as vital as they are problematic. Importantly, his papers include vibrant and utterly unique descriptions of people, place, flora and fauna, and language, as well as illustrations revealing insights into the routines of daily life (even as those routines were being systematically dismantled by colonial authorities). “Robinson’s records have informed much of the revitalisation of Tasmanian Aboriginal culture in the twentieth century and continue to provide the basis for investigations of identity and deep relationships to land by Aboriginal scholars” (Lehman n.p.). These observations and snippets of lived culture are of immense value to Palawa peoples today but the act of reading between Robinson’s assumptions and beyond his entrenched colonial views is difficult work.Image 3: George Augustus Robinson Papers, 1829–34. Image Credit: Mitchell Library, State Library of New South Wales, A 7023–A 7031.The canonical reference for Robinson’s archive is Friendly Mission: The Tasmanian Journals and Papers of George Augustus Robinson, 1829–1834, edited by N.J.B. Plomley. The volume of over 1,000 pages was first published in 1966. This large-scale project is recognised “as a monumental work of Tasmanian history” (Crane ix). Yet, this standard text (relied upon by Indigenous and non-Indigenous researchers) has clearly not reproduced a significant percentage of Robinson’s Tasmanian manuscripts. Through his presumptuous truncations Plomley has not simply edited Robinson’s work but has, quite literally, written many Palawa stories out of this colonial narrative. It is this lack of agency in determining what should be left out that is most troubling, and reflects an all-too-familiar approach which libraries, including the State Library of New South Wales, are now urgently trying to rectify. Plomley’s preface and introduction does not indicate large tranches of information are missing. Indeed, Plomley specifies “that in extenso [in full] reproduction was necessary” (4) and omissions “have been kept to a minimum” (8). A 32-page supplement was published in 1971. A new edition, including the supplement, some corrections made by Plomley, and some extra material was released in 2008. But much continues to be unknown outside of academic circles, and far too few Palawa Elders and language revival workers have had access to Robinson’s original unfiltered observations. Indeed, Plomley’s text is linear and neat when compared to the often-chaotic writings of Robinson. Digitisation cannot address matters of the materiality of the archive, but such projects do offer opportunities for access to information in its original form, unedited, and unmediated.Extensive consultation with communities in Tasmania is underpinning the digitisation and re-description of a collection which has long been assumed—through partial digitisation, microfilming, and Plomley’s text—to be readily available and wholly understood. Central to this project is not just challenging the canonical status of Plomley’s work but directly challenging the idea non-Aboriginal experts can truly understand the cultural or linguistic context of the information recorded in Robinson’s journals. One of the more exciting outcomes, so far, has been working with Palawa peoples to explore the possibility of Palawa-led transcriptions and translation, and not breaking up the tasks of this work and distributing them to consultants or to non-Indigenous student groups. In this way, people are being meaningfully reunited with their own histories and, crucially, given first right to contextualise and understand these histories. Again, digitisation and disruption can be seen here as allies with the facilitation of accessibility to an archive in ways that re-distribute the traditional power relations around interpreting and telling stories held within colonial-rich collections.Image 4: Detail, George Augustus Robinson Papers, 1829–34. Image Credit: Mitchell Library, State Library of New South Wales, A 7023–A 7031.As has been so brilliantly illustrated by Bruce Pascoe’s recent work Dark Emu (2014), when Aboriginal peoples are given the opportunity to interpret their own culture from the colonial records without interference, they are able to see strength and sophistication rather than victimhood. For, to “understand how the Europeans’ assumptions selectively filtered the information brought to them by the early explorers is to see how we came to have the history of the country we accept today” (4). Far from decrying these early colonial records Aboriginal peoples understand their vital importance in connecting to a culture which was dismantled and destroyed, but importantly it is known that far too much is lost in translation when Aboriginal Australians are not the ones undertaking the translating. ConclusionFor Aboriginal Australians, culture and knowledge is no longer always anchored to Country. These histories, once so firmly connected to communities through their ancestral lands and languages, have been dispersed across the continent and around the world. Many important stories—of family history, language, and ways of life—are held in cultural institutions and understanding the role of responsibly disseminating these collections through digitisation is paramount. In transitioning from physical collections to hybrid collections of the physical and digital, the digitisation processes conducted by memory institutions can be—and due to the size of some collections is inevitably—selective. Limited resources, even for large-scale and well-resourced digitisation projects usually realise outcomes that focus on making visually rich, key, or canonical documents, or those documents considered high use or at risk, available online. Such materials are extracted from a full body of records. Digitisation projects, as noted, tend to be devised for a broader audience where contextual questions are less central to the methodology in favour of presenting notable documents online, separate from their complete collection and, critically, their context. Our institutions carry the weight of past collecting strategies and, today, the pressure of digitisation strategies as well. Contemporary librarians should not be gatekeepers, but rather key holders. In collaborating across sectors and with communities we open doors for education, research, and the repatriation of culture and knowledge. We must, always, remember to open these doors wide: the call of Aboriginal Australians of ‘nothing about us without us’ is not an invitation to collaboration but an imperative. Libraries—as well as galleries, archives, and museums—cannot tell these stories alone. Also, these two case studies highlight what we believe to be one of the biggest mistakes that not just libraries but all cultural institutions are vulnerable to making, the assumption that just because a collection is open access it is also accessible. Digitisation projects are more valuable when communicated, contextualised and—essentially—the result of community consultation. Such work can, for some, be uncomfortable while for others it offers opportunities to embrace disruption and, by extension, opportunities to decolonise collections. For First Nations peoples this work can be more powerful than any simple measurement tool can record. Through examining our past collecting, deliberate efforts to consult, and through digital sharing projects across metropolitan and regional Australia, we can make meaningful differences to the ways in which Aboriginal Australians can, again, own their histories.Acknowledgements The authors acknowledge the Palawa peoples: the traditional custodians of the lands known today as Tasmania. The authors acknowledge, too, the Gadigal people upon whose lands this article was researched and written. We are indebted to Dana Kahabka (Conservator), Joy Lai (Imaging Specialist), Richard Neville (Mitchell Librarian), and Marika Duczynski (Project Officer) at the State Library of New South Wales. Sincere thanks are also given to Jason Ensor of Western Sydney University.ReferencesArthur, George. “Proclamation.” The Hobart Town Courier 19 Apr. 1828: 1.———. Proclamation to the Aborigines. Graphic Materials. Sydney: Mitchell Library, State Library of New South Wales, SAFE R / 247, ca. 1828–1830.Australian Museum. “Aboriginal Scarification.” 2018. 11 Jan. 2019 <https://australianmuseum.net.au/about/history/exhibitions/body-art/aboriginal-scarification/>.Brown, Molly. “Disruptive Technology: A Good Thing for Our Libraries?” International Librarians Network (2016). 26 Aug. 2018 <https://interlibnet.org/2016/11/25/disruptive-technology-a-good-thing-for-our-libraries/>.Carroll, Khadija von Zinnenburg. Art in the Time of Colony: Empires and the Making of the Modern World, 1650–2000. Farnham, UK: Ashgate Publishing, 2014.Clements, Nicholas. The Black War: Fear, Sex and Resistance in Tasmania. St Lucia, U of Queensland P, 2014.Crane, Ralph. “Introduction.” Friendly Mission: The Tasmanian Journals and Papers of George Augustus Robinson, 1829-1834. 2nd ed. Launceston and Hobart: Queen Victoria Museum and Art Gallery, and Quintus Publishing, 2008. ix.Darian-Smith, Kate, and Penelope Edmonds. “Conciliation on Colonial Frontiers.” Conciliation on Colonial Frontiers: Conflict, Performance and Commemoration in Australia and the Pacific Rim. Eds. Kate Darian-Smith and Penelope Edmonds. New York: Routledge, 2015. 1–14.Edmonds, Penelope. “‘Failing in Every Endeavour to Conciliate’: Governor Arthur’s Proclamation Boards to the Aborigines, Australian Conciliation Narratives and Their Transnational Connections.” Journal of Australian Studies 35.2 (2011): 201–18.Fiedler, Inge, and Michael A. Bayard. Artist Pigments, a Handbook of Their History and Characteristics. Ed. Robert L. Feller. Cambridge: Cambridge UP, 1986. 65–108. Franks, Rachel. “A True Crime Tale: Re-Imagining Governor Arthur’s Proclamation Board for the Tasmanian Aborigines.” M/C Journal 18.6 (2015). 1 Feb. 2019 <http://journal.media-culture.org.au/index.php/mcjournal/article/view/1036>.Franks, Rachel, and Jason Ensor. “Challenging the Canon: Collaboration, Digitisation and Education.” ALIA Online: A Conference of the Australian Library and Information Association, 11–15 Feb. 2019, Sydney.Kahabka, Dana. Condition Assessment [Governor Arthur’s Proclamation to the Aborigines, ca. 1828–1830, SAFE / R247]. Sydney: State Library of New South Wales, 2017.Lehman, Greg. “Pleading Robinson: Reviews of Friendly Mission: The Tasmanian Journals and Papers of George Augustus Robinson (2008) and Reading Robinson: Companion Essays to Friendly Mission (2008).” Australian Humanities Review 49 (2010). 1 May 2019 <http://press-files.anu.edu.au/downloads/press/p41961/html/review-12.xhtml?referer=1294&page=15>. Morris, John. “Notes on A Message to the Tasmanian Aborigines in 1829, popularly called ‘Governor Davey’s Proclamation to the Aborigines, 1816’.” Australiana 10.3 (1988): 84–7.Pascoe, Bruce. Dark Emu. Broome: Magabala Books, 2014/2018.Plomley, N.J.B. Friendly Mission: The Tasmanian Journals and Papers of George Augustus Robinson, 1829–1834. Hobart: Tasmanian Historical Research Association, 1966.Robinson, George Augustus. Papers. Textual Records. Sydney: Mitchell Library, State Library of NSW, A 7023–A 7031, 1829–34. Thorpe, Kirsten, Monica Galassi, and Rachel Franks. “Discovering Indigenous Australian Culture: Building Trusted Engagement in Online Environments.” Journal of Web Librarianship 10.4 (2016): 343–63.

Abstract:

To Rodica, who died first / To Mircea, who continues me [I]In his book Picturing Health and Illness: Images of Identity and Difference, Sander L. Gilman argues that during the nineteenth century the healthy norm perceived as ugly not only those who were deformed, but also those who were ill, ageing, and/or experienced different bodily “loss of function” (53). In the nineteenth century, how much was medicine responsible for defining ugly as ill, deformed, and getting old, versus beautiful as healthy, and then, for the sake of the community’s health, firmly promoting these ideas? Furthermore, with the rise of photographic art, medicine was able to manipulate and control these ideas even more efficiently. According to Deborah Lupton, “The new technology of photography that developed from the mid-nineteenth century became a valuable strategy in the documentation of patterns of disease and illness, and the construction of the sites of dirtiness and contagion” (30). This essay focuses on the skin’s narrative as it presents its story when photographed. William Yang takes photos of his good friend, Allan, who is dying of AIDS. Of interests here is to discuss/approach the photographic art not from its scopophilic angle, that is, not from its perverse and pleasurable voyeuristic angle, but to analyze it side-by-side with Drew Leder’s notion of the “the remaining body.” He believes that in states of severe pain, one’s body “dys-appears,” “from the Greek prefix signifying ‘bad,’ ‘hard,’ or ‘ill,’” and he gives as example the English word “dysfunctional” (84). Yang’s photos offer variations of the “body that remains,” and, as we shall see, of the body that gradually did not remain. Through his work, Yang approaches visually the theme of the ars moriendi of the entropic body in pain as reminder of its mortal, gradually disabling fabric. [II] In the section of his work dedicated to AIDS, Gilman discusses only a collection of posters that have circulated in mass-media, which he researched at the National Library of Medicine at Bethesda, Maryland. Gilman thinks these posters function as the “still images of illness” (174). In other words, he believes these posters may have had an impact on the lay community, although not the intensified, urgent one, as he would have hoped. Because Gilman did not include a single photo of a patient dying of AIDS — although he understood this lack — I juxtapose one of the posters from his book with Yang’s photos taken of his dying friend, Allan, from his project entitled Sadness: A Monologue with Slides. Here I discuss the impact of Allan’s increasingly emaciated body versus the static, almost ineffective quality of the poster in order to consider the idea according to which “AIDS victims are living sculptures. … Both subject and object of art … they combine with their disease to overcome the narcissism of human consciousness. … It is an art of continuous transformation of subject into object and object into subject” (Siebers 220-21). Yang is an Australian artist with Chinese parentage. The images presented in this section originally appeared in print in Thomas W. Sokolowski’s and Rosalind Solomon’s collection of essays entitled Portraits in the Time of AIDS. According to the editors, Yang presented them as “monologues with slide projection in the theatre” (34) because the main actor of this one-man show is dying of AIDS. Yang’s work consists of seventeen slides with short texts written underneath them. In an attempt to respect the body that is dying, the texts are not recited, but the readers/spectators read them subvocally. The brilliance of this piece resides in its hushed tone, which parallels the act of dying when the patient’s body and mind become more and more tacit and lifeless. From one photo to another, and from one text to another, we discover Allan, although we never quite get to know him. The minitexts relate Allan’s story: how he was hospitalized at St. Vincent’s, known as “the AIDS ward” (35); how he decided to return home, into a studio shared with a dealer; how AIDS first attacked his lungs, and so he had to keep next to him “a large cylinder of oxygen as he was often out of breath” (37); how AIDS then affected his sight, and he developed a condition known as “CytoMegalo Virus — C.M.V. Retinctus” that gradually “destroyed the retina” of his eyes (39); how he decided “to go off medication” (46); and, how, finally “he went into a coma. I saw a nurse give him a glass of water but the water just ran out of his mouth” (50). To look at these photos time and time again is to be reminded of Albert Einstein’s vision of the passenger trapped in the train running with the speed of light. That passenger could not sense all that was happening in the train, and especially outside of it, because time moves in its cosmic, non-human, slippery dimension, and thus sensation could not profusely permeate his body. Juxtaposing Einstein’s vision with Allan’s decaying body, I read the latter’s body as if it were coiled up inside his mind just like a snail covers a part of its body under its hard shell. The photos are presented rapidly with no entr-acte in between; in a matter of minutes, time and space seem to collapse. There is no time for a prolonged reminiscence of Allan’s spent life. Allan is dying now, and he does not have time to remember his life. He barely has time to feel his body, a touch, or a kiss on his face, which seems to Yang “to have caved in” (47). Through this work, not only does Yang capture the disturbing moments of a friend dying, but he also touches on the “epidermis” of despair. This “epidermis” is both endotopic and exotopic, meaning that it starts within the patient and then it radiates/extends to his relatives and friends. Yang’s images of Allan dying give the impression that his body levitates, jutting out into space — but unfortunately without much meaning. On the other hand, the posters advertised for AIDS are simple, if not quite embarrassing and disrespectful given the gravity of this illness. They rarely touch on any aspects related to the illness itself, as they allude more to the immorality of homosexual acts. Gilman explains part of the rationale involved in the process of not presenting people dying of AIDS as follows: The image of the ‘positive’ body or the body with AIDS is strictly controlled in the world of the public health poster. Nowhere is an image of the ‘ugly’ or diseased body evoked directly, for any such evocation would refer back to the initial sense as a ‘gay’ disease. … Mens non sana in corpore insano cannot be the motto. For representing the ill body as a dying body is not possible. Such a body would point to ‘deviance from the norm’ in the form of illness. And this association with homosexuality and addiction labeled as illness must be suppressed. … All these images are images not of educating, but of control. (162) The poster chosen for illustration reads “LOVE AIDS PEOPLE,” with AIDS used as a verb and not as a noun; nonetheless, the construction’s subtlety is rather counterproductive. To a certain extent, this poster can be related to Michelangelo Merisi Caravaggio’s The Incredulity of Saint Thomas (1601-02). There, the Apostle touches the actual wound because he needs tactile proof to accept its existence. The act of touching, as well as the skin open by the wound, reveal the fact that “Skin lacks the depth, the interiority we want it to give us. … The flesh we crave as confirmation of our forms cannot do anything but turn us forever out even as we burrow into the holes we find there” (Phelan 42). But the poster presented below brings into focus verbally (therefore propagandistically) how one’s body might be destroyed because of AIDS. Furthermore, the symbol of the arrow is a recurrent motif in the art representing AIDS, especially in light of its religious association with the martyrdom of Saint Sebastian (see for example David Wojnarowicz art works which offer a personal interpretation of the martyrdom of Saint Sebastian). But if LOVE AIDS PEOPLE, and if gay men identify themselves with a martyr, then they might easily fall target to this twisted logic and think of themselves as victims. As Larry Kramer notes, gay men are tragic people partly because they feel responsible for an illness that has been affecting both the homosexual and heterosexual communities: “The continuing existence of HIV is essential for the functioning of the totalitarianism under which gay people now live. It works like this: HIV allows ‘them’ to sell us as sick. And that kills off our usefulness, both in our minds — their thinking we are sick — and in the eyes of the world — everyone thinking we are sick” (65).Gay men have always been a target since, allegedly, they are a menace to the institution of marriage, procreation, and to morality in general. Endocrinology studies have been conducted on gay men, but their results have not been able to say with certainty why some people prefer to engage in homosexual rather than heterosexual acts. According to Jennifer Terry, earlier studies from the 1930s aimed at determining distinct somatic features of homosexuals for the most part failed to produce any such evidence. Most of them focused on the overall physical structure of bodies, measuring skeletal features, pelvic angles and things like muscle density and hair distribution. (144) (Another useful resource is Holt N. Parker’s 2001 article “The Myth of the Heterosexual: Anthropology and Sexuality for Classicists.”) How and by whom are our sexual identities created? Does the presence of one specific anatomical organ delimit one person’s sexual identity? We have been trained into believing that there are only two genders, male and female, partly because of our binary way of thinking. Needless to say, just as in one color there are degrees of its intensity and saturation, so there are in us verbal, behavioral, and sexual tendencies that could make us look and act more or less masculine or feminine. Even more productive is to note the importance of power (control) and the erotic in our lives considering that the photos (and the minitexts) presenting Allan seem insufficient to initiate a dialogue by themselves. Because the eroticized body is what dies, that is, what is put at risk or could become powerless because of AIDS. The body that cannot touch and be touched anymore; the body that cannot control its needs and desires; and, ultimately, the body that is deprived of its pleasures and thus loses its erotic self. Therefore, AIDS is not only a way to redefine our erotic life, but also becomes a reason to question our hygiene practices. Elizabeth Grosz points out that “erotic pleasures are evanescent, they are forgotten almost as they occur” (195). But when erotic pleasures are controlled, as seems to be the case because of AIDS, have we intervened in such a manner as to program our intercourse? Admittedly, AIDS is predominantly linked with one’s sexuality and, hence, it could make one feel too self-aware about one’s needs, as well as rigid and self-conscious in an (intimate) act which, in essence, is all about losing oneself, being uninhibited. In the end, Allan’s sense of identity seems to be imprinted only in the camera’s objective lens. After he died, as Yang remembers, “I read his diaries […]. AIDS was a tragedy that was for sure, but as well he had an addictive personality and his day to day life was full of desperation. I hadn’t realize the extent of this and it came as a shock. Yet there were moments of clarity when his fresh test for life shone” (51). Yang does not say more about Allan’s intimate writings and, as he suggests, it was quite surprising for him to discover a richer, more intimate dimension of his friend. Still, until Allan’s diaries will be released to the public to offer us a more palpable view on his life, we rely exclusively on the selections of photos and minitexts accomplished by Yang, thus being aware that, no matter how exquisite they are, they could only say a few things about this enigmatic patient.[III] After exposing Allan’s gradually collapsing body, we may want to analyze to which extent is dying/death something that reveals our self-centricity. It is by now a truism to say that death is the final moment of our embodiment to which we are denied access. Nonetheless, we cannot stop thinking about (our) death, and the last passage of this essay proposes its own reflection on this subject. Norbert Elias argues that each one of us is a homo clausus (Latin for “closed, self-sufficient being”). He believes that this condition is a consequence of our living an advanced phase in our individualized life. Surprisingly, he relates this self-sufficiency to the ritual of dying. He believes that in highly industrialized societies, a patient may benefit from the most recent technical and medical equipment, but that that person usually dies alone, meaning without his family/relatives around him. On the other hand, as he goes on to argue, “families in less developed states … often go hand in hand with far greater inequalities of power between men and women. [The dying] take leave of the world publicly, within a circle of people most of whom have strong emotive value for them, and for whom they themselves have a such a value. They die unhygienically, but not alone” (87). Elias does not explore this idea in depth, so we are left to wonder what he meant by dying unhygienically, or if he thought that method was better in coping with death. Also, he never mentioned the exact countries/regions he had in mind when he made that remark; therefore, we are left unsatisfied by his comment. Nonetheless, as Elias reminds us, it is important to remember that the traditional death rituals were and are intimate moments (and they should remain like this). The homo clausus idea may be linked with a body that is reaching its final embodiment, and hence becoming a closing-in-itself body. However, how does a body transact and/or negotiate the moments of its final embodiment? The process of sinking in one’s body, to which I refer, is not a visually, aurally, or especially olfactorily pleasant experience. Our deceitful memory misdirects our emotional brains by indicating which subsystem is still functional and open and which has become useless, that is, closed. In this light, we should redefine Elias’s idea by saying that what appears to be a monolithic structure — a body: closed, sealed, and/or self-contained — is in fact a very fluid body; that death does not reveal our self-centricity because that reasoning may generate an absurd idea, namely, we die alone because we have spent a life alone. Consequently, the dying body becomes the margin par excellence, which, because it is completely out of control, does not stop from leaking and/or emitting smells. This theory is confirmed by a study conducted on dying patients, Dying Process: Patients' Experiences of Palliative Care (2000), where Julia Lawton notes that “on a number of occasions, staff kept aromatherapy oil burners running throughout the day and night in an attempt to veil the odour of excretia, vomit and rotting flesh. … I observed that smell created a boundary around a patient, repelling others away” (135). One has to close one’s eyes to vaguely imagine what it must feel like for the medical personnel to keep the vigil of the dying bodies. Nonetheless, the lay community is exposed to photographs of the dying only on rare occasions. According to Gilman, these images are not made public because “The classical model of ‘healthy/beauty’ and ‘illness/ugliness’ is part of a cultural baggage that accompanies any representation of the ill or healthy body” (118-19). While the skin is endowed with the capacity of regenerating itself after it has been wounded, thus effacing time, a photograph of a dying body seems to efface one’s memory of one’s accumulated experiences. Such a photograph makes its contents (that is, the time, location, personal context of the shooting) disappear since its details will eventually fade away. As a corollary, the absent body effaces its photographed version, leaving it few chances to be remembered. The theme of the ars moriendi, as presented in this essay, has demonstrated that what dies is not only one’s body, but also the echoed memory of its erotic self. ReferencesElias, Norbert. The Loneliness of Dying. New York: Blackwell, 1985. Gilman, Sander. Picturing Health and Illness: Images of Identity and Difference. Baltimore: Johns Hopkins UP, 1995. Grosz, Elizabeth. Space, Time, and Perversion: Essays on the Politics of Bodies.New York: Routledge, 1995. Kramer, Larry. The Tragedy of Today’s Gay. New York: Penguin Group, 2005. Lawton, Julia. Dying Process: Patients' Experiences of Palliative Care. New York: Routledge, 2000. Leder, Drew. The Absent Body. Chicago: University of Chicago Press, 1990. Lupton, Deborah. The Imperative of Health: Public Health and the Regulated Body. Thousand Oaks, California: Sage Publications, 1995. Peggy Phelan. Mourning Sex: Performing Public Memories. New York: Routledge, 1997. Siebers, Tobin. The Body Aesthetic: From Fine Art to Body Modification. Ann Arbor: University of Michigan Press, 2000. Jennifer Terry. “The Seductive Power of Science in the Making of Deviant Subjectivity.” Posthuman Bodies. Eds. Judith Halberstam and Ira Livingston. Bloomington : Indiana University Press, 1995: 135-162. Yang, William. “Allan from Sadness: A Monologue with Slides.” Portraits in the Time of AIDS. Eds. Thomas W. Sokolowski and Rosalind Solomon. New York: Grey Art Gallery & Study Center, 1988: 34-51.

Abstract:

One of the most distinct places the politics of affect have played out in Australia of late has been in the struggles around the mandatory detention of undocumented migrants; specifically, in arguments about the amount of compassion border control practices should or do entail. Indeed, in 1990 the newly established Joint Standing Committee on Migration (JSCM) published its first report, Illegal Entrants in Australia: Balancing Control and Compassion. Contemporaneous, thought not specifically concerned, with the establishment of mandatory detention for asylum seekers, this report helped shape the context in which detention policy developed. As the Bureau of Immigration and Population Research put it in their summary of the report, “the Committee endorsed a tough stance regarding all future illegal entrants but a more compassionate stance regarding those now in Australia” (24). It would be easy now to frame this report in a narrative of decline. Under a Labor government the JSCM had at least some compassion to offer; since the 1996 conservative Coalition victory any such compassion has been in increasingly short supply, if not an outright political liability. This is a popular narrative for those clinging to the belief that Labor is still, in some residual sense, a social-democratic party. I am more interested in the ways the report’s subtitle effectively predicted the framework in which debates about detention have since been constructed: control vs. compassion, with balance as the appropriate mediating term. Control and compassion are presented as the poles of a single governmental project insofar as they can be properly calibrated; but at the same time, compassion is presented as an external balance to the governmental project (control), an extra-political restriction of the political sphere. This is a very formal way to put it, but it reflects a simple, vernacular theory that circulates widely among refugee activists. It is expressed with concision in Peter Mares’ groundbreaking book on detention centres, Borderlines, in the chapter title “Compassion as a vice”. Compassion remains one of the major themes and demands of Australian refugee advocates. They thematise compassion not only for the obvious reasons that mandatory detention involves a devastating lack thereof, and that its critics are frequently driven by intense emotional connections both to particular detainees and TPV holders and, more generally, to all who suffer the effects of Australian border control. There is also a historical or conjunctural element: as Ghassan Hage has written, for the last ten years or so many forms of political opposition in Australia have organised their criticisms in terms of “things like compassion or hospitality rather than in the name of a left/right political divide” (7). This tendency is not limited to any one group; it ranges across the spectrum from Liberal Party wets to anarchist collectives, via dozens of organised groups and individuals varying greatly in their political beliefs and intentions. In this context, it would be tendentious to offer any particular example(s) of compassionate activism, so let me instead cite a complaint. In November 2002, the conservative journal Quadrant worried that morality and compassion “have been appropriated as if by right by those who are opposed to the government’s policies” on border protection (“False Refugees” 2). Thus, the right was forced to begin to speak the language of compassion as well. The Department of Immigration, often considered the epitome of the lack of compassion in Australian politics, use the phrase “Australia is a compassionate country, but…” so often they might as well inscribe it on their letterhead. Of course this is hypocritical, but it is not enough to say the right are deforming the true meaning of the term. The point is that compassion is a contested term in Australian political discourse; its meanings are not fixed, but constructed and struggled over by competing political interests. This should not be particularly surprising. Stuart Hall, following Ernesto Laclau and others, famously argued that no political term has an intrinsic meaning. Meanings are produced – articulated, and de- or re-articulated – through a dynamic and partisan “suturing together of elements that have no necessary or eternal belongingness” (10). Compassion has many possible political meanings; it can be articulated to diverse social (and antisocial) ends. If I was writing on the politics of compassion in the US, for example, I would be talking about George W. Bush’s slogan of “compassionate conservatism”, and whatever Hannah Arendt meant when she argued that “the passion of compassion has haunted and driven the best men [sic] of all revolutions” (65), I think she meant something very different by the term than do, say, Rural Australians for Refugees. As Lauren Berlant has written, “politicized feeling is a kind of thinking that too often assumes the obviousness of the thought it has” (48). Hage has also opened this assumed obviousness to question, writing that “small-‘l’ liberals often translate the social conditions that allow them to hold certain superior ethical views into a kind of innate moral superiority. They see ethics as a matter of will” (8-9). These social conditions are complex – it isn’t just that, as some on the right like to assert, compassion is a product of middle class comfort. The actual relations are more dynamic and open. Connections between class and occupational categories on the one hand, and social attitudes and values on the other, are not given but constructed, articulated and struggled over. As Hall put it, the way class functions in the distribution of ideologies is “not as the permanent class-colonization of a discourse, but as the work entailed in articulating these discourses to different political class practices” (139). The point here is to emphasise that the politics of compassion are not straightforward, and that we can recognise and affirm feelings of compassion while questioning the politics that seem to emanate from those feelings. For example, a politics that takes compassion as its basis seems ill-suited to think through issues it can’t put a human face to – that is, the systematic and structural conditions for mandatory detention and border control. Compassion’s political investments accrue to specifiable individuals and groups, and to the harms done to them. This is not, as such, a bad thing, particularly if you happen to be a specifiable individual to whom a substantive harm has been done. But compassion, going one by one, group by group, doesn’t cope well with situations where the form of the one, or the form of the disadvantaged minority, constitutes not only a basis for aid or emancipation, but also violently imposes particular ideas of modern western subjectivity. How does this violence work? I want to answer by way of the story of an Iranian man who applied for asylum in Australia in 2004. In the available documents he is referred to as “the Applicant”. The Applicant claimed asylum based on his homosexuality, and his fear of persecution should he return to Iran. His asylum application was rejected by the Refugee Review Tribunal because the Tribunal did not believe he was really gay. In their decision they write that “the Tribunal was surprised to observe such a comprehensive inability on the Applicant’s part to identify any kind of emotion-stirring or dignity-arousing phenomena in the world around him”. The phenomena the Tribunal suggest might have been emotion-stirring for a gay Iranian include Oscar Wilde, Alexander the Great, Andre Gide, Greco-Roman wrestling, Bette Midler, and Madonna. I can personally think of much worse bases for immigration decisions than Madonna fandom, but there is obviously something more at stake here. (All quotes from the hearing are taken from the High Court transcript “WAAG v MIMIA”. I have been unable to locate a transcript of the original RRT decision, and so far as I know it remains unavailable. Thanks to Mark Pendleton for drawing my attention to this case, and for help with references.) Justice Kirby, one of the presiding Justices at the Applicant’s High Court appeal, responded to this with the obvious point, “Madonna, Bette Midler and so on are phenomena of the Western culture. In Iran, where there is death for some people who are homosexuals, these are not in the forefront of the mind”. Indeed, the High Court is repeatedly critical and even scornful of the Tribunal decision. When Mr Bennett, who is appearing for the Minister for Immigration in the appeal begins his case, he says, “your Honour, the primary attack which seems to be made on the decision of the –”, he is cut off by Justice Gummow, who says, “Well, in lay terms, the primary attack is that it was botched in the Tribunal, Mr Solicitor”. But Mr Bennett replies by saying no, “it was not botched. If one reads the whole of the Tribunal judgement, one sees a consistent line of reasoning and a conclusion being reached”. In a sense this is true; the deep tragicomic weirdness of the Tribunal decision is based very much in the unfolding of a particular form of homophobic rationality specific to border control and refugee determination. There have been hundreds of applications for protection specifically from homophobic persecution since 1994, when the first such application was made in Australia. As of 2002, only 22% of those applications had been successful, with the odds stacked heavily against lesbians – only 7% of lesbian applicants were successful, against a shocking enough 26% of gay men (Millbank, Imagining Otherness 148). There are a number of reasons for this. The Tribunal has routinely decided that even if persecution had occurred on the basis of homosexuality, the Applicant would be able to avoid such persecution if she or he acted ‘discreetly’, that is, hid their sexuality. The High Court ruled out this argument in 2003, but the Tribunal maintains an array of effective techniques of homophobic exclusion. For example, the Tribunal often uses the Spartacus International Gay Guide to find out about local conditions of lesbian and gay life even though it is a tourist guide book aimed at Western gay men with plenty of disposable income (Dauvergne and Millbank 178-9). And even in cases which have found in favour of particular lesbian and gay asylum seekers, the Tribunal has often gone out of its way to assert that lesbians and gay men are, nevertheless, not the subjects of human rights. States, that is, violate no rights when they legislate against lesbian and gay identities and practices, and the victims of such legislation have no rights to protection (Millbank, Fear 252-3). To go back to Madonna. Bennett’s basic point with respect to the references to the Material Girl et al is that the Tribunal specifically rules them as irrelevant. Mr Bennett: The criticism which is being made concerns a question which the Tribunal asked and what is very much treated in the Tribunal’s judgement as a passing reference. If one looks, for example, at page 34 – Kirby J: This is where Oscar, Alexander and Bette as well as Madonna turn up? Mr Bennett: Yes. The very paragraph my learned friend relies on, if one reads the sentence, what the Tribunal is saying is, “I am not looking for these things”. Gummow J: Well, why mention it? What sort of training do these people get in decision making before they are appointed to this body, Mr Solicitor? Mr Bennett: I cannot assist your Honour on that. Gummow J: No. Well, whatever it is, what happened here does not speak highly of the results of it. To gloss this, Bennett argues that the High Court are making too much of an irrelevant minor point in the decision. Mr Bennett: One would think [based on the High Court’s questions] that the only things in this judgement were the throwaway references saying, “I wasn’t looking for an understanding of Oscar Wilde”, et cetera. That is simply, when one reads the judgement as a whole, not something which goes to the centre at all… There is a small part of the judgement which could be criticized and which is put, in the judgement itself, as a subsidiary element and prefaced with the word “not”. Kirby J: But the “not” is a bit undone by what follows when I think Marilyn [Monroe] is thrown in. Mr Bennett: Well, your Honour, I am not sure why she is thrown in. Kirby J: Well, that is exactly the point. Mr Bennett holds that, as per Wayne’s World, the word “not” negates any clause to which it is attached. Justice Kirby, on the other hand, feels that this “not” comes undone, and that this undoing – and the uncertainty that accrues to it – is exactly the point. But the Tribunal won’t be tied down on this, and makes use of its “not” to hold gay stereotypes at arm’s length – which is still, of course, to hold them, at a remove that will insulate homophobia against its own illegitimacy. The Tribunal defends itself against accusations of homophobia by announcing specifically and repeatedly, in terms that consciously evoke culturally specific gay stereotypes, that it is not interested in those stereotypes. This unconvincing alibi works to prevent any inconvenient accusations of bias from butting in on the routine business of heteronormativity. Paul Morrison has noted that not many people will refuse to believe you’re gay: “Claims to normativity are characteristically met with scepticism. Only parents doubt confessions of deviance” (5). In this case, it is not a parent but a paternalistic state apparatus. The reasons the Tribunal did not believe the applicant [were] (a) because of “inconsistencies about the first sexual experience”, (b) “the uniformity of relationships”, (c) the “absence of a “gay” circle of friends”, (d) “lack of contact with the “gay” underground” and [(e)] “lack of other forms of identification”. Of these the most telling, I think, are the last three: a lack of gay friends, of contact with the gay underground, or of unspecified other forms of identification. What we can see here is that even if the Tribunal isn’t looking for the stereotypical icons of Western gay culture, it is looking for the characteristic forms of Western gay identity which, as we know, are far from universal. The assumptions about the continuities between sex acts and identities that we codify with names like lesbian, gay, homosexual and so on, often very poorly translate the ways in which non-Western populations understand and describe themselves, if they translate them at all. Gayatri Gopinath, for example, uses the term “queer diaspor[a]... in contradistinction to the globalization of “gay” identity that replicates a colonial narrative of development and progress that judges all other sexual cultures, communities, and practices against a model of Euro-American sexual identity” (11). I can’t assess the accuracy of the Tribunal’s claims regarding the Applicant’s social life, although I am inclined to scepticism. But if the Applicant in this case indeed had no gay friends, no contact with the gay underground and no other forms of identification with the big bad world of gaydom, he may obviously, nevertheless, have been a Man Who Has Sex With Men, as they sometimes say in AIDS prevention work. But this would not, either in the terms of Australian law or the UN Convention, qualify him as a refugee. You can only achieve refugee status under the terms of the Convention based on membership of a ‘specific social group’. Lesbians and gay men are held to constitute such groups, but what this means is that there’s a certain forcing of Western identity norms onto the identity and onto the body of the sexual other. This shouldn’t read simply as a moral point about how we should respect diversity. There’s a real sense that our own lives as political and sexual beings are radically impoverished to the extent we fail to foster and affirm non-Western non-heterosexualities. There’s a sustaining enrichment that we miss out on, of course, in addition to the much more serious forms of violence others will be subject to. And these are kinds of violence as well as forms of enrichment that compassionate politics, organised around the good refugee, just does not apprehend. In an essay on “The politics of bad feeling”, Sara Ahmed makes a related argument about national shame and mourning. “Words cannot be separated from bodies, or other signs of life. So the word ‘mourns’ might get attached to some subjects (some more than others represent the nation in mourning), and it might get attached to some objects (some losses more than others may count as losses for this nation)” (73). At one level, these points are often made with regard to compassion, especially as it is racialised in Australian politics; for example, that there would be a public outcry were we to detain hypothetical white boat people. But Ahmed’s point stretches further – in the necessary relation between words and bodies, she asks not only which bodies do the describing and which are described, but which are permitted a relation to language at all? If “words cannot be separated from bodies”, what happens to those bodies words fail? The queer diasporic body, so reductively captured in that phrase, is a case in point. How do we honour its singularity, as well as its sociality? How do we understand the systematicity of the forces that degrade and subjugate it? What do the politics of compassion have to offer here? It’s easy for the critic or the cynic to sneer at such politics – so liberal, so sentimental, so wet – or to deconstruct them, expose “the violence of sentimentality” (Berlant 62), show “how compassion towards the other’s suffering might sustain the violence of appropriation” (Ahmed 74). These are not moves I want to make. A guiding assumption of this essay is that there is never a unilinear trajectory between feelings and politics. Any particular affect or set of affects may be progressive, reactionary, apolitical, or a combination thereof, in a given situation; compassionate politics are no more necessarily bad than they are necessarily good. On the other hand, “not necessarily bad” is a weak basis for a political movement, especially one that needs to understand and negotiate the ways the enclosures and borders of late capitalism mass-produce bodies we can’t put names to, people outside familiar and recognisable forms of identity and subjectivity. As Etienne Balibar has put it, “in utter disregard of certain borders – or, in certain cases, under covers of such borders – indefinable and impossible identities emerge in various places, identities which are, as a consequence, regarded as non-identities. However, their existence is, none the less, a life-and-death question for large numbers of human beings” (77). Any answer to that question starts with our compassion – and our rage – at an unacceptable situation. But it doesn’t end there. References Ahmed, Sara. “The Politics of Bad Feeling.” Australian Critical Race and Whiteness Studies Association Journal 1.1 (2005): 72-85. Arendt, Hannah. On Revolution. Harmondsworth: Penguin, 1973. Balibar, Etienne. We, the People of Europe? Reflections on Transnational Citizenship. Trans. James Swenson. Princeton: Princeton UP, 2004. Berlant, Lauren. “The Subject of True Feeling: Pain, Privacy and Politics.” Cultural Studies and Political Theory. Ed. Jodi Dean. Ithaca and Cornell: Cornell UP, 2000. 42-62. Bureau of Immigration and Population Research. Illegal Entrants in Australia: An Annotated Bibliography. Canberra: Australian Government Publishing Service, 1994. Dauvergne, Catherine and Jenni Millbank. “Cruisingforsex.com: An Empirical Critique of the Evidentiary Practices of the Australian Refugee Review Tribunal.” Alternative Law Journal 28 (2003): 176-81. “False Refugees and Misplaced Compassion” Editorial. Quadrant 390 (2002): 2-4. Hage, Ghassan. Against Paranoid Nationalism: Searching for Hope in a Shrinking Society. Annandale: Pluto, 2003. Hall, Stuart. The Hard Road to Renewal: Thatcherism and the Crisis of the Left. London: Verso, 1988. Joint Standing Committee on Migration. Illegal Entrants in Australia: Balancing Control and Compassion. Canberra: The Committee, 1990. Mares, Peter. Borderline: Australia’s Treatment of Refugees and Asylum Seekers. Sydney: UNSW Press, 2001. Millbank, Jenni. “Imagining Otherness: Refugee Claims on the Basis of Sexuality in Canada and Australia.” Melbourne University Law Review 26 (2002): 144-77. ———. “Fear of Persecution or Just a Queer Feeling? Refugee Status and Sexual orientation in Australia.” Alternative Law Journal 20 (1995): 261-65, 299. Morrison, Paul. The Explanation for Everything: Essays on Sexual Subjectivity. New York: New York UP, 2001. Pendleton, Mark. “Borderline.” Bite 2 (2004): 3-4. “WAAG v MIMIA [2004]. HCATrans 475 (19 Nov. 2004)” High Court of Australia Transcripts. 2005. 17 Oct. 2005 http://www.austlii.edu.au/au/other/HCATrans/2004/475.html>. Citation reference for this article MLA Style McGrath, Shane. "Compassionate Refugee Politics?." M/C Journal 8.6 (2005). echo date('d M. Y'); ?> <http://journal.media-culture.org.au/0512/02-mcgrath.php>. APA Style McGrath, S. (Dec. 2005) "Compassionate Refugee Politics?," M/C Journal, 8(6). Retrieved echo date('d M. Y'); ?> from <http://journal.media-culture.org.au/0512/02-mcgrath.php>.

Abstract:

Introduction It is very common for children’s films to adapt, rework, or otherwise re-imagine existing cultural material. Such re-imaginings are potential candidates for fidelity criticism: a mode of analysis whereby an adaptation is judged according to its degree of faithfulness to the source text. Indeed, it is interesting that while fidelity criticism is now considered outdated and problematic by adaptation theorists (see Stam; Leitch; and Whelehan) the issue of fidelity has tended to linger in the discussions that form around material adapted for children. In particular, it is often assumed that the re-imagining of cultural material for children will involve a process of “dumbing down” that strips the original text of its complexity so that it is more easily consumed by young audiences (see Semenza; Kellogg; Hastings; and Napolitano). This is especially the case when children’s films draw from texts—or genres—that are specifically associated with an adult readership. This paper explores such an interplay between children’s and adult’s culture with reference to the re-imagining of the horror genre in children’s animated film. Recent years have seen an inrush of animated films that play with horror tropes, conventions, and characters. These include Frankenweenie (2012), ParaNorman (2012), Hotel Transylvania (2012), Igor (2008), Monsters Inc. (2001), Monster House (2006), and Monsters vs Aliens (2009). Often diminishingly referred to as “kiddie horror” or “goth lite”, this re-imagining of the horror genre is connected to broader shifts in children’s culture, literature, and media. Anna Jackson, Karen Coats, and Roderick McGillis, for instance, have written about the mainstreaming of the Gothic in children’s literature after centuries of “suppression” (2); a glance at the titles in a children’s book store, they tell us, may suggest that “fear or the pretence of fear has become a dominant mode of enjoyment in literature for young people” (1). At the same time, as Lisa Hopkins has pointed out, media products with dark, supernatural, or Gothic elements are increasingly being marketed to children, either directly or through product tie-ins such as toys or branded food items (116-17). The re-imagining of horror for children demands our attention for a number of reasons. First, it raises questions about the commercialisation and repackaging of material that has traditionally been considered “high culture”, particularly when the films in question are seen to pilfer from sites of the literary Gothic such as Mary Shelley’s Frankenstein (1818) or Bram Stoker’s Dracula (1897). The classic horror films of the 1930s such as James Whale’s Frankenstein (1931) also have their own canonical status within the genre, and are objects of reverence for horror fans and film scholars alike. Moreover, aficionados of the genre have been known to object vehemently to any perceived simplification or dumbing down of horror conventions in order to address a non-horror audience. As Lisa Bode has demonstrated, such objections were articulated in many reviews of the film Twilight, in which the repackaging and simplifying of vampire mythology was seen to pander to a female, teenage or “tween” audience (710-11). Second, the re-imagining of horror for children raises questions about whether the genre is an appropriate source of pleasure and entertainment for young audiences. Horror has traditionally been understood as problematic and damaging even for adult viewers: Mark Jancovich, for instance, writes of the long-standing assumption that horror “is moronic, sick and worrying; that any person who derives pleasure from the genre is moronic, sick and potentially dangerous” and that both the genre and its fans are “deviant” (18). Consequently, discussions about the relationship between children and horror have tended to emphasise regulation, restriction, censorship, effect, and “the dangers of imitative violence” (Buckingham 95). As Paul Wells observes, there is a “consistent concern […] that horror films are harmful to children, but clearly these films are not made for children, and the responsibility for who views them lies with adult authority figures who determine how and when horror films are seen” (24). Previous academic work on the child as horror viewer has tended to focus on children as consumers of horror material designed for adults. Joanne Cantor’s extensive work in this area has indicated that fright reactions to horror media are commonly reported and can be long-lived (Cantor; and Cantor and Oliver). Elsewhere, the work of Sarah Smith (45-76) and David Buckingham (95-138) has indicated that children, like adults, can gain certain pleasures from the genre; it has also indicated that children can be quite media savvy when viewing horror, and can operate effectively as self-censors. However, little work has yet been conducted on whether (and how) the horror genre might be transformed for child viewers. With this in mind, I explore here the re-imagining of horror in two children’s animated films: Frankenweenie and ParaNorman. I will consider the way horror tropes, narratives, conventions, and characters have been reshaped in each film with a child’s perspective in mind. This, I argue, does not make them simplified texts or unsuitable objects of pleasure for adults; instead, the films demonstrate that the act of re-imagining horror for children calls into question long-held assumptions about pleasure, taste, and the boundaries between “adult” and “child”. Frankenweenie and ParaNorman: Rewriting the Myth of Childhood Innocence Frankenweenie is a stop-motion animation written by John August and directed by Tim Burton, based on a live-action short film made by Burton in 1984. As its name suggests, Frankenweenie re-imagines Shelley’s Frankenstein by transforming the relationship between creator and monster into that between child and pet. Burton’s Victor Frankenstein is a young boy living in a small American town, a creative loner who enjoys making monster movies. When his beloved dog Sparky is killed in a car accident, young Victor—like his predecessor in Shelley’s novel—is driven by the awfulness of this encounter with death to discover the “mysteries of creation” (Shelley 38): he digs up Sparky’s body, drags the corpse back to the family home, and reanimates him in the attic. This coming-to-life sequence is both a re-imagining of the famous animation scene in Whale’s film Frankenstein and a tender expression of the love between a boy and his dog. The re-imagined creation scene therefore becomes a site of negotiation between adult and child audiences: adult viewers familiar with Whale’s adaptation and its sense of electric spectacle are invited to rethink this scene from a child’s perspective, while child viewers are given access to a key moment from the horror canon. While this blurring of the lines between child and adult is a common theme in Burton’s work—many of his films exist in a liminal space where a certain childlike sensibility mingles with a more adult-centric dark humour—Frankenweenie is unique in that it actively re-imagines as “childlike” a film and/or work of literature that was previously populated by adult characters and associated with adult audiences. ParaNorman is the second major film from the animation studio Laika Entertainment. Following in the footsteps of the earlier Laika film Coraline (2009)—and paving the way for the studio’s 2014 release, Boxtrolls—ParaNorman features stop-motion animation, twisted storylines, and the exploration of dark themes and spaces by child characters. The film tells the story of Norman, an eleven year old boy who can see and communicate with the dead. This gift marks him as an outcast in the small town of Blithe Hollow, which has built its identity on the historic trial and hanging of an “evil” child witch. Norman must grapple with the town’s troubled past and calm the spirit of the vengeful witch; along the way, he and an odd assortment of children battle zombies and townsfolk alike, the latter appearing more monstrous than the former as the film progresses. Although ParaNorman does not position itself as an adaptation of a specific horror text, as does Frankenweenie, it shares with Burton’s film a playful intertextuality whereby references are constantly made to iconic films in the horror genre (including Halloween [1978], Friday the 13th [1980], and Day of the Dead [1985]). Both films were released in 2012 to critical acclaim. Interestingly, though, film critics seemed to disagree over who these texts were actually “for.” Some reviewers described the films as children’s texts, and warned that adults would likely find them “tame and compromised” (Scott), “toothless” (McCarthy) or “sentimental” (Bradshaw). These comments carry connotations of simplification: the suggestion is that the conventions and tropes of the horror genre have been weakened (or even contaminated) by the association with child audiences, and that consequently adults cannot (or should not) take pleasure in the films. Other reviewers of ParaNorman and Frankenweenie suggested that adults were more likely to enjoy the films than children (O’Connell; Berardinelli; and Wolgamott). Often, this suggestion came together with a warning about scary or dark content: the films were deemed to be too frightening for young children, and this exclusion of the child audience allowed the reviewer to acknowledge his or her own enjoyment of and investment in the film (and the potential enjoyment of other adult viewers). Lou Lumenick, for instance, peppers his review of ParaNorman with language that indicates his own pleasure (“probably the year’s most visually dazzling movie so far”; the climax is “too good to spoil”; the humour is “deliciously twisted”), while warning that children as old as eight should not be taken to see the film. Similarly, Christy Lemire warns that certain elements of Frankenweenie are scary and that “this is not really a movie for little kids”; she goes on to add that this scariness “is precisely what makes ‘Frankenweenie’ such a consistent wonder to watch for the rest of us” (emphasis added). In both these cases a line is drawn between child and adult viewers, and arguably it is the film’s straying into the illicit area of horror from the confines of a children’s text that renders it an object of pleasure for the adult viewer. The thrill of being scared is also interpreted here as a specifically adult pleasure. This need on the part of critics to establish boundaries between child and adult viewerships is interesting given that the films themselves strive to incorporate children (as characters and as viewers) into the horror space. In particular, both films work hard to dismantle the myths of childhood innocence—and associated ideas about pleasure and taste—that have previously seen children excluded from the culture of the horror film. Both the young protagonists, for instance, are depicted as media-literate consumers or makers of horror material. Victor is initially seen exhibiting one of his home-made monster movies to his bemused parents, and we first encounter Norman watching a zombie film with his (dead) grandmother; clearly a consummate horror viewer, Norman decodes the film for Grandma, explaining that the zombie is eating the woman’s head because, “that’s what they do.” In this way, the myth of childhood innocence is rewritten: the child’s mature engagement with the horror genre gives him agency, which is linked to his active position in the narrative (both Norman and Victor literally save their towns from destruction); the parents, meanwhile, are reduced to babbling stereotypes who worry that their sons will “turn out weird” (Frankenweenie) or wonder why they “can’t be like other kids” (ParaNorman). The films also rewrite the myth of childhood innocence by depicting Victor and Norman as children with dark, difficult lives. Importantly, each boy has encountered death and, for each, his parents have failed to effectively guide him through the experience. In Frankenweenie Victor is grief-stricken when Sparky dies, yet his parents can offer little more than platitudes to quell the pain of loss. “When you lose someone you love they never really leave you,” Victor’s mother intones, “they just move into a special place in your heart,” to which Victor replies “I don’t want him in my heart—I want him here with me!” The death of Norman’s grandmother is similarly dismissed by his mother in ParaNorman. “I know you and Grandma were very close,” she says, “but we all have to move on. Grandma’s in a better place now.” Norman objects: “No she’s not, she’s in the living room!” In both scenes, the literal-minded but intelligent child seems to understand death, loss, and grief while the parents are unable to speak about these “mature” concepts in a meaningful way. The films are also reminders that a child’s first experience of death can come very young, and often occurs via the loss of an elderly relative or a beloved pet. Death, Play, and the Monster In both films, therefore, the audience is invited to think about death. Consequently, there is a sense in each film that while the violent and sexual content of most horror texts has been stripped away, the dark centre of the horror genre remains. As Paul Wells reminds us, horror “is predominantly concerned with the fear of death, the multiple ways in which it can occur, and the untimely nature of its occurrence” (10). Certainly, the horror texts which Frankenweenie and ParaNorman re-imagine are specifically concerned with death and mortality. The various adaptations of Frankenstein that are referenced in Frankenweenie and the zombie films to which ParaNorman pays homage all deploy “the monster” as a figure who defies easy categorisation as living or dead. The othering of this figure in the traditional horror narrative allows him/her/it to both subvert and confirm cultural ideas about life, death, and human status: for monsters, as Elaine Graham notes, have long been deployed in popular culture as figures who “mark the fault-lines” and also “signal the fragility” of boundary structures, including the boundary between human and not human, and that between life and death (12). Frankenweenie’s Sparky, as an iteration of the Frankenstein monster, clearly fits this description: he is neither living nor dead, and his monstrosity emerges not from any act of violence or from physical deformity (he remains, throughout the film, a cute and lovable dog, albeit with bolts fixed to his neck) but from his boundary-crossing status. However, while most versions of the Frankenstein monster are deliberately positioned to confront ideas about the human/machine boundary and to perform notions of the posthuman, such concerns are sidelined in Frankenweenie. Instead, the emphasis is on concerns that are likely to resonate with children: Sparky is a reminder of the human preoccupation with death, loss, and the question of why (or whether, or when) we should abide by the laws of nature. Arguably, this indicates a re-imagining of the Frankenstein tale not only for child audiences but from a child’s perspective. In ParaNorman, similarly, the zombie–often read as an articulation of adult anxieties about war, apocalypse, terrorism, and the deterioration of social order (Platts 551-55)—is re-used and re-imagined in a childlike way. From a child’s perspective, the zombie may represent the horrific truth of mortality and/or the troublesome desire to live forever that emerges once this truth has been confronted. More specifically, the notion of dealing meaningfully with the past and of honouring rather than silencing the dead is a strong thematic undercurrent in ParaNorman, and in this sense the zombies are important figures who dramatise the connections between past and present. While this past/present connection is explored on many levels in ParaNorman—including the level of a town grappling with its dark history—it is Norman and his grandmother who take centre stage: the boundary-crossing figure of the zombie is re-realised here in terms of a negotiation with a presence that is now absent (the elderly relative who has died but is still remembered). Indeed, the zombies in this film are an implicit rebuke to Norman’s mother and her command that Norman “move on” after his grandmother’s death. The dead are still present, this film playfully reminds us, and therefore “moving on” is an overly simplistic and somewhat disrespectful response (especially when imposed on children by adult authority figures.) If the horror narrative is built around the notion that “normality is threatened by the Monster”, as Robin Wood has famously suggested, ParaNorman and Frankenweenie re-imagine this narrative of subversion from a child’s perspective (31). Both films open up a space within which the child is permitted to negotiate with the destabilising figure of the monster; the normality that is “threatened” here is the adult notion of the finality of death and, relatedly, the assumption that death is not a suitable subject for children to think or talk about. Breaking down such understandings, Frankenweenie and ParaNorman strive not so much to play with death (a phrase that implies a certain callousness, a problematic disregard for human life) but to explore death through the darkness of play. This is beautifully imaged in a scene from ParaNorman in which Norman and his friend Neil play with the ghost of Neil’s recently deceased dog. “We’re going to play with a dead dog in the garden,” Neil enthusiastically announces to his brother, “and we’re not even going to have to dig him up first!” Somewhat similarly, film critic Richard Corliss notes in his review of Frankenweenie that the film’s “message to the young” is that “children should play with dead things.” Through this intersection between “death” and “play”, both films propose a particularly child-like (although not necessarily child-ish) way of negotiating horror’s dark territory. Conclusion Animated film has always been an ambiguous space in terms of age, pleasure, and viewership. As film critic Margaret Pomeranz has observed, “there is this perception that if it’s an animated film then you can take the little littlies” (Pomeranz and Stratton). Animation itself is often a signifier of safety, fun, nostalgia, and childishness; it is a means of addressing families and young audiences. Yet at the same time, the fantastic and transformative aspects of animation can be powerful tools for telling stories that are dark, surprising, or somehow subversive. It is therefore interesting that the trend towards re-imagining horror for children that this paper has identified is unfolding within the animated space. It is beyond the scope of this paper to fully consider what animation as a medium brings to this re-imagining process. However, it is worth noting that the distinctive stop-motion style used in both films works to position them as alternatives to Disney products (for although Frankenweenie was released under the Disney banner, it is visually distinct from most of Disney’s animated ventures). The majority of Disney films are adaptations or re-imaginings of some sort, yet these re-imaginings look to fairytales or children’s literature for their source material. In contrast, as this paper has demonstrated, Frankenweenie and ParaNorman open up a space for boundary play: they give children access to tropes, narratives, and characters that are specifically associated with adult viewers, and they invite adults to see these tropes, narratives, and characters from a child’s perspective. Ultimately, it is difficult to determine the success of this re-imagining process: what, indeed, does a successful re-imagining of horror for children look like, and who might be permitted to take pleasure from it? Arguably, ParaNorman and Frankenweenie have succeeded in reshaping the genre without simplifying it, deploying tropes and characters from classic horror texts in a meaningful way within the complex space of children’s animated film. References Berardinelli, James. “Frankenweenie (Review).” Reelviews, 4 Oct. 2012. 6 Aug. 2014 ‹http://www.reelviews.net/php_review_template.php?identifier=2530›. Bode, Lisa. “Transitional Tastes: Teen Girls and Genre in the Critical Reception of Twilight.” Continuum: Journal of Media & Cultural Studies 24.5 (2010): 707-19. Bradshaw, Peter. “Frankenweenie: First Look Review.” The Guardian, 11 Oct. 2012. 6 Aug. 2014 ‹http://www.theguardian.com/film/2012/oct/10/frankenweenie-review-london-film-festival-tim-burton›. Buckingham, David. Moving Images: Understanding Children’s Emotional Responses to Television. Manchester and New York: Manchester University Press, 1996. Cantor, Joanne. “‘I’ll Never Have a Clown in My House’ – Why Movie Horror Lives On.” Poetics Today 25.2 (2004): 283-304. Cantor, Joanne, and Mary Beth Oliver. “Developmental Differences in Responses to Horror”. The Horror Film. Ed. Stephen Prince. New Brunswick, NJ: Rutgers UP, 2004. 224-41. Corliss, Richard. “‘Frankenweenie’ Movie Review: A Re-Animated Delight”. Time, 4 Oct. 2012. 6 Aug. 2014 ‹http://entertainment.time.com/2012/10/04/tim-burtons-frankenweenie-a-re-animated-delight/›. Frankenweenie. Directed by Tim Burton. Walt Disney Pictures, 2012. Graham, Elaine L. Representations of the Post/Human: Monsters, Aliens and Others in Popular Culture. Manchester: Manchester UP, 2002. Hastings, A. Waller. “Moral Simplification in Disney’s The Little Mermaid.” The Lion and the Unicorn 17.1 (1993): 83-92. Hopkins, Lisa. Screening the Gothic. Austin: U of Texas P, 2005. Jackson, Anna, Karen Coats, and Roderick McGillis. “Introduction.” The Gothic in Children’s Literature: Haunting the Borders. Eds. Anna Jackson, Karen Coats, and Roderick McGillis. New York: Routledge, 2008. 1-14. Jancovich, Mark. “General Introduction.” Horror: The Film Reader. Ed. Mark Jancovich. London: Routledge, 2002. 1-19. Kellogg, Judith L. “The Dynamics of Dumbing: The Case of Merlin.” The Lion and the Unicorn 17.1 (1993): 57-72. Leitch, Thomas. “Twelve Fallacies in Contemporary Adaptation Theory.” Criticism 45.2 (2003): 149-71. Lemire, Christy. “‘Frankenweenie’ Review: Tim Burton Reminds Us Why We Love Him.” The Huffington Post, 2 Oct. 2012. 6 Aug. 2014 ‹http://www.huffingtonpost.com/2012/10/03/frankenweenie-review-tim-burton_n_1935142.html›. Lumenick, Lou. “So Good, It’s Scary (ParaNorman Review)”. New York Post, 17 Aug. 2012. 3 Jun. 2015 ‹http://nypost.com/2012/08/17/so-good-its-scary/›. McCarthy, Todd. “Frankenweenie: Film Review.” The Hollywood Reporter, 20 Sep. 2012. 6 Aug. 2014 ‹http://www.hollywoodreporter.com/movie/frankenweenie/review/372720›. Napolitano, Marc. “Disneyfying Dickens: Oliver & Company and The Muppet Christmas Carol as Dickensian Musicals.” Studies in Popular Culture 32.1 (2009): 79-102. O’Connell, Sean. “Middle School and Zombies? Awwwkward!” Washington Post, 17 Aug. 2012. 3 Jun. 2015 ‹http://www.washingtonpost.com/gog/movies/paranorman,1208210.html›. ParaNorman. Directed by Chris Butler and Sam Fell. Focus Features/Laika Entertainment, 2012. Platts, Todd K. “Locating Zombies in the Sociology of Popular Culture”. Sociology Compass 7 (2013): 547-60. Pomeranz, Margaret, and David Stratton. “Igor (Review).” At the Movies, 14 Dec. 2008. 6 Aug. 2014 ‹http://www.abc.net.au/atthemovies/txt/s2426109.htm›. Scott, A.O. “It’s Aliiiive! And Wagging Its Tail: ‘Frankenweenie’, Tim Burton’s Homage to Horror Classics.” New York Times, 4 Oct. 2012. 6 Aug. 2014 ‹http://www.nytimes.com/2012/10/05/movies/frankenweenie-tim-burtons-homage-to-horror-classics.html›. Semenza, Gregory M. Colón. “Teens, Shakespeare, and the Dumbing Down Cliché: The Case of The Animated Tales.” Shakespeare Bulletin 26.2 (2008): 37-68. Shelley, Mary. Frankenstein, or, The Modern Prometheus. Hertfordshire: Wordsworth Editions, 1993 [1818]. Smith, Sarah J. Children, Cinema and Censorship: From Dracula to the Dead End Kids. London: I.B. Tauris, 2005. Stam, Robert. “Introduction: The Theory and Practice of Adaptation.” Literature and Film: A Guide to the Theory and Practice of Film Adaptation. Eds. Robert Stam and Alessandra Raengo. Oxford: Blackwell, 2005. 1-52. Wells, Paul. The Horror Genre: From Beelzebub to Blair Witch. London: Wallflower, 2000. Whelehan, Imelda. “Adaptations: the Contemporary Dilemmas.” Adaptations: From Text to Screen, Screen to Text. Eds. Deborah Cartmell and Imelda Whelehan. London: Routledge, 1999. 3-19. Wolgamott, L. Kent. “‘Frankenweenie’ A Box-Office Bomb, But Superior Film.” Lincoln Journal Star, 10 Oct. 2012. 18 Aug. 2014 ‹http://journalstar.com/entertainment/movies/l-kent-wolgamott-frankenweenie-a-box-office-bomb-but-superior/article_42409e82-89b9-5794-8082-7b5de3d469e2.html›. Wood, Robin. “The American Nightmare: Horror in the 70s.” Horror: The Film Reader. Ed. Mark Jancovich. London: Routledge, 2002. 25-32.

Abstract:

I was born illegitimate. Born on an existential precipice. My unwed mother was 36 years old when she relinquished me. I was the fourth baby she was required to give away. After I emerged blood stained and blue tinged – abject, liminal – not only did the nurses refuse me my mother’s touch, I also lost the sound of her voice. Her smell. Her heart beat. Her taste. Her gaze. The silence was multi-sensory. When they told her I was dead, I also lost, within her memory and imagination, my life. I was adopted soon after but not told for over four decades. It was too shameful for even me to know. Imprinted at birth with a psychological ‘death’, I fell, as a Late Discovery Adoptee (LDA), into a socio-cultural and psychological abyss, frozen at birth at the bottom of a parturitive void from where, invisible within family, society, and self I was unable to form an undamaged sense of being.Throughout the 20th century (and for centuries before) this kind of ‘social abortion’ was the dominant script. An adoptee was regarded as a bastard, born of sin, the mother blamed, the father exonerated, and silence demanded (Lynch 28-74). My adoptive mother also sinned. She was infertile. But, in taking me on, she assumed the role of a womb worthy woman, good wife, and, in her case, reluctant mother (she secretly didn’t want children and was privately overwhelmed by the task). In this way, my mother, my adoptive mother, and myself are all the daughters of bereavement, all of us sacrificed on the altar of prejudice and fear that infertility, sex outside of marriage, and illegitimacy were unspeakable crimes for which a price must be paid and against which redemptive protection must be arranged. If, as Thomas Keneally (5) writes, “original sin is the mother fluid of history” then perhaps all three of us all lie in its abject waters. Grotevant, Dunbar, Kohler and Lash Esau (379) point out that adoption was used to ‘shield’ children from their illegitimacy, women from their ‘sexual indiscretions’, and adoptive parents from their infertility in the belief that “severing ties with birth family members would promote attachment between adopted children and parents”. For the adoptee in the closed record system, the socio/political/economic vortex that orchestrated their illegitimacy is born out of a deeply, self incriminating primal fear that reaches right back into the recesses of survival – the act of procreation is infested with easily transgressed life and death taboos within the ‘troop’ that require silence and the burial of many bodies (see Amanda Gardiner’s “Sex, Death and Desperation: Infanticide, Neonaticide, and Concealment of Birth in Colonial Western Australia” for a palpable, moving, and comprehensive exposition on the links between 'illegitimacy', the unmarried mother and child murder). As Nancy Verrier (24) states in Coming Home to Self, “what has to be understood is that separation trauma is an insidious experience, because, as a society, we fail to see this experience as a trauma”. Indeed, relinquishment/adoption for the baby and subsequent adult can be acutely and chronically painful. While I was never told the truth of my origins, of course, my body knew. It had been there. Sentient, aware, sane, sensually, organically articulate, it messaged me (and anyone who may have been interested) over the decades via the language of trauma, its lexicon and grammar cellular, hormonal, muscular (Howard & Crandall, 1-17; Pert, 72), the truth of my birth, of who I was an “unthought known” (Bollas 4). I have lived out my secret fatality in a miasmic nebula of what I know now to be the sequelae of adoption psychopathology: nausea, physical and psychological pain, agoraphobia, panic attacks, shame, internalised anger, depression, self-harm, genetic bewilderment, and generalised anxiety (Brodzinsky 25-47; Brodzinsky, Smith, & Brodzinsky 74; Kenny, Higgins, Soloff, & Sweid xiv; Levy-Shiff 97-98; Lifton 210-212; Verrier The Primal Wound 42-44; Wierzbicki 447-451) – including an all pervading sense of unreality experienced as dissociation (the experience of depersonalisation – where the self feels unreal – and derealisation – where the world feels unreal), disembodiment, and existential elision – all characteristics of Post Traumatic Stress Disorder (PTSD). In these ways, my body intervened, acted out, groaned in answer to the social overlay, and from beyond “the dermal veil” tried to procure access, as Vicky Kirby (77) writes, to “the body’s opaque ocean depths” through its illnesses, its eloquent, and incessantly aching and silent verbosities deepened and made impossibly fraught because I was not told. The aim of this paper is to discuss one aspect of how my body tried to channel the trauma of my secret fatality and liminality: my pre-disclosure art work (the cellular memory of my trauma also expressed itself, pre-disclosure, through my writings – poetry, journal entries – and also through post-coital glossolalia, all discussed at length in my Honours research “Womb Tongues” and my Doctoral Dissertation “The Womb Artist – A Novel: Translating Pre-verbal Late Discovery Adoption Trauma into Narrative”). From the age of thirty onwards I spent twelve years in therapy where the cause of my childhood and adult psychopathology remained a mystery. During this time, my embodied grief and memories found their way into my art work, a series of 5’ x 3’ acrylic paintings, some of which I offer now for discussion (figures 1-4). These paintings map and express what my body knew but could not verbalise (without language to express my grief, my body found other ways to vent). They are symptom and sign of my pre-verbal adoption trauma, evidence that my body ‘knew’ and laboured ceaselessly and silently to find creative ways to express the incarcerated trauma. Post disclosure, I have used my paintings as artefacts to inform, underpin, and nourish the writing of a collection of poetry “Womb Tongues” and a literary novel/memoir “The Womb Artist” (TWA) in an ongoing autoethnographical, performative, and critical inquiry. My practice-led research as a now conscious and creative witness, fashions the recontextualisation of my ‘self’ into my ‘self’ and society, this time with cognisant and reparative knowledge and facilitates the translation of my body’s psychopathology and memory (explicit and implicit) into a healing testimony that explores the traumatised body as text and politicizes the issues surrounding LDAs (Riley 205). If I use these paintings as a memoirist, I use them second hand, after the fact, after they have served their initial purpose, as the tangible art works of a baby buried beneath a culture’s prejudice, shame, and judgement and the personal cries from the illegitimate body/self. I use them now to explore and explain my subclinical and subterranean life as a LDA.My pre-disclosure paintings (Figures 1-4) – filled with vaginal, fetal, uterine, and umbilical references – provide some kind of ‘evidence’ that my body knew what had happened to me as if, with the tenacity of a poltergeist, my ‘spectral self’ found ways to communicate. Not simply clues, but the body’s translation of the intra-psychic landscape, a pictorial and artistic séance into the world, as if my amygdala – as quasar and signal, homing device and history lesson (a measure, container, and memoir) – knew how to paint a snap shot or an x-ray of the psyche, of my cellular marrow memories (a term formulated from fellow LDA Sandy McCutcheon’s (76) memoir, The Magician’s Son when he says, “What I really wanted was the history of my marrow”). If, as Salveet Talwar suggests, “trauma is processed from the body up”, then for the LDA pre-discovery, non-verbal somatic signage is one’s ‘mother tongue’(25). Talwar writes, “non-verbal expressive therapies such as art, dance, music, poetry and drama all activate the sub-cortical regions of the brain and access pre-verbal memories” (26). In these paintings, eerily divinatory and pointed traumatic, memories are made visible and access, as Gussie Klorer (213) explains in regard to brain function and art therapy, the limbic (emotional) system and the prefrontal cortex in sensorimotor integration. In this way, as Marie Angel and Anna Gibbs (168) suggest, “the visual image may serve as a kind of transitional mode in thought”. Ruth Skilbeck in her paper First Things: Reflections on Single-lens Reflex Digital Photography with a Wide-angled Lens, also discusses (with reference to her photographic record and artistic expression of her mother’s death) what she calls the “dark matter” – what has been overlooked, “left out”, and/or is inexplicable (55) – and the idea of art work as the “transitional object” as “a means that some artists use, conceptually and yet also viscerally, in response to the extreme ‘separation anxiety’ of losing a loved one, to the void of the Unknown” (57). In my case, non-disclosure prevented my literacy and the evolution of the image into language, prevented me from fully understanding the coded messages left for me in my art work. However, each of my paintings is now, with the benefit of full disclosure, a powerful, penetrating, and comprehensible intra and extra sensory cry from the body in kinaesthetic translation (Lusebrink, 125; Klorer, 217). In Figure 1, ‘Embrace’, the reference to the umbilical is palpable, described in my novel “The Womb Artist” (184) this way; “two ropes tightly entwine as one, like a dark and dirty umbilical cord snaking its way across a nether world of smudged umbers”. There is an ‘abject’ void surrounding it. The cord sapped of its colour, its blood, nutrients – the baby starved of oxygen, breath; the LDA starved of words and conscious understanding. It has two parts entwined that may be seen in many ways (without wanting to reduce these to static binaries): mother/baby; conscious/unconscious; first person/third person; child/adult; semiotic/symbolic – numerous dualities could be spun from this embrace – but in terms of my novel and of the adoptive experience, it reeks of need, life and death, a text choking on the poetic while at the same time nourished by it; a text made ‘available’ to the reader while at the same narrowing, limiting, and obscuring the indefinable nature of pre-verbal trauma. Figure 1. Embrace. 1993. Acrylic on canvas.The painting ‘Womb Tongues’ (Figure 2) is perhaps the last (and, obviously, lasting) memory of the infinite inchoate universe within the womb, the umbilical this time wrapped around in a phallic/clitorial embrace as the baby-self emerges into the constrictions of a Foucauldian world, where the adoptive script smothers the ‘body’ encased beneath the ‘coils’ of Judeo-Christian prejudice and centuries old taboo. In this way, the reassigned adoptee is an acute example of power (authority) controlling and defining the self and what knowledge of the self may be allowed. The baby in this painting is now a suffocated clitoris, a bound subject, a phallic representation, a gagged ‘tongue’ in the shape of the personally absent (but socially imposing) omni-present and punitive patriarchy. Figure 2. Womb Tongues. 1997. Acrylic on canvas.‘Germination’ (Figure 3) depicts an umbilical again, but this time as emerging from a seething underworld and is present in TWA (174) this way, “a colony of night crawlers that writhe and slither on the canvas, moving as one, dozens of them as thin as a finger, as long as a dream”. The rhizomic nature of this painting (and Figure 4), becomes a heaving horde of psychosomatic and psychopathological influences and experiences, a multitude of closely packed, intense, and dendridic compulsions and symptoms, a mass of interconnected (and by nature of the silence and lie) subterranean knowledges that force the germination of a ‘ghost baby/child/adult’ indicated by the pale and ashen seedling that emerges above ground. The umbilical is ghosted, pale and devoid of life. It is in the air now, reaching up, as if in germination to a psychological photosynthesis. There is the knot and swarm within the unconscious; something has, in true alien fashion, been incubated and is now emerging. In some ways, these paintings are hardly cryptic.Figure 3. Germination.1993. Acrylic on canvas.In Figure 4 ‘The Birthing Tree’, the overt symbolism reaches ‘clairvoyant status’. This could be read as the family ‘tree’ with its four faces screaming out of the ‘branches’. Do these represent the four babies relinquished by our mother (the larger of these ‘beings’ as myself, giving birth to the illegitimate, silenced, and abject self)? Are we all depicted in anguish and as wraithlike, grotesquely simplified into pure affect? This illegitimate self is painted as gestating a ‘blue’ baby, near full-term in a meld of tree and ‘self’, a blue umbilical cord, again, devoid of blood, ghosted, lifeless and yet still living, once again suffocated by the representation of the umbilical in the ‘bowels’ of the self, the abject part of the body, where refuse is stored and eliminated: The duodenum of the damned. The Devil may be seen as Christopher Bollas’s “shadow of the object”, or the Jungian archetypal shadow, not simply a Judeo-Christian fear-based spectre and curmudgeon, but a site of unprocessed and, therefore, feared psychological material, material that must be brought to consciousness and integrated. Perhaps the Devil also is the antithesis to ‘God’ as mother. The hell of ‘not mother’, no mother, not the right mother, the reluctant adoptive mother – the Devil as icon for the rich underbelly of the psyche and apophatic to the adopted/artificial/socially scripted self.Figure 4. The Birthing Tree. 1995. Acrylic on canvas.These paintings ache with the trauma of my relinquishment and LDA experience. They ache with my body’s truth, where the cellular and psychological, flesh and blood and feeling, leak from my wounds in unspeakable confluence (the two genital lips as the site of relinquishment, my speaking lips that have been sealed through non-disclosure and shame, the psychological trauma as Verrier’s ‘primal wound’) just as I leaked from my mother (and society) at birth, as blood and muck, and ooze and pus and death (Grosz 195) only to be quickly and silently mopped up and cleansed through adoption and life-long secrecy. Where I, as translator, fluent in both silence and signs, disclose the baby’s trauma, asking for legitimacy. My experience as a LDA sets up an interesting experiment, one that allows an examination of the pre-verbal/pre-disclosure body as a fleshed and breathing Rosetta Stone, as an interface between the language of the body and of the verbalised, painted, and written text. As a constructed body, written upon and invented legally, socially, and psychologically, I am, in Hélène Cixous’s (“To Live the Orange” 83) words, “un-forgetting”, “un-silencing” and “unearthing” my ‘self’ – I am re-writing, re-inventing and, under public scrutiny, legitimising my ‘self’. I am a site of inquiry, discovery, extrapolation, and becoming (Metta 492; Poulus 475) and, as Grosz (vii) suggests, a body with “all the explanatory power” of the mind. I am, as I embroider myself and my LDA experience into literary and critical texts, authoring myself into existence, referencing with particular relevance Peter Carnochan’s (361) suggestion that “analysis...acts as midwife to the birth of being”. I am, as I swim forever amorphous, invisible, and unspoken in my mother’s womb, fashioning a shore, landscaping my mind against the constant wet, my chronic liminality (Rambo 629) providing social landfall for other LDAs and silenced minorities. As Catherine Lynch (3) writes regarding LDAs, “Through the creation of text and theory I can formulate an intimate space for a family of adoptive subjects I might never know via our participation in a new discourse in Australian academia.” I participate through my creative, self-reflexive, process fuelled (Durey 22), practice-led enquiry. I use the intimacy (and also universality and multiplicity) and illegitimacy of my body as an alterative text, as a site of academic and creative augmentation in the understanding of LDA issues. The relinquished and silenced baby and LDA adult needs a voice, a ‘body’, and a ‘tender’ place in the consciousness of society, as Helen Riley (“Confronting the Conspiracy of Silence” 11) suggests, “voice, validation, and vindication”. Judith Herman (3) argues that, “Survivors challenge us to reconnect fragments, to reconstruct history, to make meaning of their present symptoms in the light of past events”. I seek to use the example of my experience – as Judith Durey (31) suggests, in “support of evocative, creative modes of representation as valid forms of research in their own right” – to unfurl the whole, to give impetus and precedence for other researchers into adoption and advocate for future babies who may be bought, sold, arranged, and/or created by various means. The recent controversy over Gammy, the baby boy born with Down Syndrome in Thailand, highlights the urgent and moral need for legislation with regard to surrogacy (see Kajsa Ekis Ekman’s Being and Being Bought: Prostitution, Surrogacy and the Split Self for a comprehensive examination of surrogacy issues). Indeed, Catherine Lynch in her paper Doubting Adoption Legislation links the experiences of LDAs and the children of born of surrogacy, most effectively arguing that, “if the fate that closed record adoptees suffered was a misplaced solution to the question of what to do with children already conceived how can you justify the deliberate conception of a child with the intention even before its creation of cruelly removing that child from their mother?” (6). Cixous (xxii) confesses, “All I want is to illustrate, depict fragments, events of human life and death...each unique and yet at the same time exchangeable. Not the law, the exception”. I, too, am a fragment, an illustration (a painting), and, as every individual always is – paradoxically – a communal and, therefore, deeply recognisable and generally applicable minority and exception. In my illegitimacy, I am some kind of evidence. Evidence of cellular memory. Evidence of embodiment. Evidence that silenced illegitimacies will manifest in symptom and non-verbal narratives, that they will ooze out and await translation, verification, and witness. This paper is offered with reverence and with feminist intention, as a revenant mouthpiece for other LDAs, babies born of surrogacy, and donor assisted offspring (and, indeed, any) who are marginalised, silenced, and obscured. It is also intended to promote discussion in the psychological and psychoanalytic fields and, as Helen Riley (202-207) advocates regarding late discovery offspring, more research within the social sciences and the bio-medical field that may encourage legislators to better understand what the ‘best interests of the child’ are in terms of late discovery of origins and the complexity of adoption/conception practices available today. As I write now (and always) the umbilical from my paintings curve and writhe across my soul, twist and morph into the swollen and throbbing organ of tongues, my throat aching to utter, my hands ready to craft latent affect into language in translation of, and in obedience to, my body’s knowledges. It is the art of mute witness that reverses genesis, that keeps the umbilical fat and supple and full of blood, and allows my conscious conception and creation. Indeed, in the intersection of my theoretical, creative, psychological, and somatic praxis, the heat (read hot and messy, insightful and insistent signage) of my body’s knowledges perhaps intensifies – with a ripe bouquet – the inevitably ongoing odour/aroma of the reproductive world. ReferencesAngel, Maria, and Anna Gibbs. “On Moving and Being Moved: The Corporeality of Writing in Literary Fiction and New Media Art.” Literature and Sensation, eds. Anthony Uhlmann, Helen Groth, Paul Sheehan, and Stephan McLaren. Newcastle upon Tyne, UK: Cambridge Scholars Publishing, 2009: 162-172. Bollas, Christopher. The Shadow of the Object: Psychoanalysis of the Unthought Known. New York: Columbia UP, 1987. Brodzinsky, David. “Adjustment to Adoption: A Psychosocial Perspective.” Clinical Psychology Review 7 (1987): 25-47. doi: 10.1016/0272-7358(87)90003-1.Brodzinsky, David, Daniel Smith, and Anne Brodzinsky. Children’s Adjustment to Adoption: Developmental and Clinical Issues. California: Sage Publications, 1998.Carnochan, Peter. “Containers without Lids”. Psychoanalytic Dialogues 16.3 (2006): 341-362.Cixous, Hélène. “To Live the Orange”. The Hélène Cixous Reader: With a Preface by Hélène Cixous and Foreword by Jacques Derrida, ed. Susan Sellers. Oxford, UK: Routledge, 1979/1994. 81-92. ---. “Preface.” The Hélène Cixous Reader: With a Preface by Hélène Cixous and Foreword by Jacques Derrida, ed. Susan Sellers. Oxford, UK: Routledge, 1994. xv-xxii.Coull, Kim. “Womb Tongues: A Collection of Poetry.” Honours Thesis. Perth, WA: Edith Cowan University, 2007. ---. “The Womb Artist – A Novel: Translating Late Discovery Adoptee Pre-Verbal Trauma into Narrative”. Dissertation. Perth, WA: Edith Cowan University, 2014. Durey, Judith. Translating Hiraeth, Performing Adoption: Art as Mediation and Form of Cultural Production. Dissertation. Perth, WA: Murdoch University, 2010. 22 Sep. 2011 .Ekis Ekman, Kajsa. Being and Being Bought: Prostitution, Surrogacy and the Split Self. Trans. S. Martin Cheadle. North Melbourne: Spinifex Press, 2013. Gardiner, Amanda. “Sex, Death and Desperation: Infanticide, Neonaticide, and Concealment of Birth in Colonial Western Australia”. Dissertation. Perth, WA: Edith Cowan University, 2014. Grosz, Elizabeth. Volatile Bodies. NSW: Allen &. Unwin, 1994. Grotevant, Harold D., Nora Dunbar, Julie K. Kohler, and Amy. M. Lash Esau. “Adoptive Identity: How Contexts within and beyond the Family Shape Developmental Pathways.” Family Relations 49.3 (2000): 79-87.Herman, Judith L. Trauma and Recovery: From Domestic Abuse to Political Terror. London: Harper Collins, 1992. Howard, Sethane, and Mark W. Crandall. Post Traumatic Stress Disorder: What Happens in the Brain. Washington Academy of Sciences 93.3 (2007): 1-18.Keneally, Thomas. Schindler’s List. London: Serpentine Publishing Company, 1982. Kenny, Pauline, Daryl Higgins, Carol Soloff, and Reem Sweid. Past Adoption Experiences: National Research Study on the Service Response to Past Adoption Practices. Research Report 21. Australian Institute of Family Studies, 2012.Kirby, Vicky. Telling Flesh: The Substance of the Corporeal. New York and London: Routledge, 1997. Klorer, P. Gussie. “Expressive Therapy with Severely Maltreated Children: Neuroscience Contributions.” Journal of the American Art Therapy Association 22.4 (2005): 213-220. doi:10.1080/07421656.2005.10129523.Levy-Shiff, Rachel. “Psychological Adjustment of Adoptees in Adulthood: Family Environment and Adoption-Related Correlates. International Journal of Behavioural Development 25 (2001): 97-104. doi: 1080/01650250042000131.Lifton, Betty J. “The Adoptee’s Journey.” Journal of Social Distress and the Homeless 11.2 (2002): 207-213. doi: 10.1023/A:1014320119546.Lusebrink, Vija B. “Art Therapy and the Brain: An Attempt to Understand the Underlying Processes of Art Expression in Therapy.” Journal of the American Art Therapy Association 21.3 (2004): 125-135. doi:10.1080/07421656. 2004.10129496.Lynch, Catherine. “An Ado/aptive Reading and Writing of Australia and Its Contemporary Literature.” Australian Journal of Adoption 1.1 (2009): 1-401.---. Doubting Adoption Legislation. n.d.McCutcheon, Sandy. The Magician’s Son: A Search for Identity. Sydney, NSW: Penguin, 2006. Metta, Marilyn. “Putting the Body on the Line: Embodied Writing and Recovery through Domestic Violence.” Handbook of Autoethnography, eds. Stacy Holman Jones, Tony Adams, and Carolyn Ellis. Walnut Creek, CA: Left Coast Press, 2013: 486-509.Pert, Candace. Molecules of Emotion: The Science behind Mind-body Medicine. New York: Touchstone, 2007. Rambo, Carol. “Twitch: A Performance of Chronic Liminality.” Handbook of Autoethnography, eds. Stacy Holman Jones, Tony Adams, and Carolyn Ellis. Walnut Creek, CA: Left Coast Press, 2013: 627-638.Riley, Helen J. Identity and Genetic Origins: An Ethical Exploration of the Late Discovery of Adoptive and Donor-insemination Offspring Status. Dissertation. Brisbane: Queensland University of Technology, 2012.---. “Confronting the Conspiracy of Silence and Denial of Difference for Late Discovery Persons and Donor Conceived People.” Australian Journal of Adoption 7.2 (2013): 1-13.Skilbeck, Ruth. “First Things: Reflection on Single-Lens Reflex Digital Photography with a Wide-Angle Lens.” International Journal of the Image 3 (2013): 55-66. Talwar, Savneet. “Accessing Traumatic Memory through Art Making: An Art Therapy Trauma Protocol (ATTP)." 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Abstract:

In PilsenTwenty-six Station Road,She climbed to the third floorUp stairs which were all that was leftOf the whole house,She opened her doorFull on to the sky,Stood gaping over the edge.For this was the placeThe world ended.Thenshe locked up carefullylest someone stealSiriusor Aldebaranfrom her kitchen,went back downstairsand settled herselfto waitfor the house to rise againand for her husband to rise from the ashesand for her children’s hands and feet to be stuck back in placeIn the morning they found herstill as stone, sparrows pecking her hands.Five Minutes after the Air Raidby Miroslav Holub(Calder 287) Holding Still Detonation. Affect. During the Second World War, London and other European cities were subjected to the terrors of aerial bombardment, rendered through nightmarish anticipations of the bomber (Gollin 7) and the material storm of the real air-raid. The fall of bombs plagued cities and their citizens with the terrible rain of explosives and incendiary weapons. A volatile landscape was formed as the urban environment was ‘unmade’ and urged into violent motion. Flying projectiles of shrapnel, debris and people; avalanches of collapsing factories and houses; the inhale and exhale of compressed air and firestorms; the scream of the explosion. All these composed an incredibly fluid urban traumatic, as atmospheres fell over the cities that was thick with smoke, dust, and ventilated only by terror (see for instance Sebald 10 and Mendieta’s 3 recent commentary). Vast craters were imprinted onto the charred morphologies of London and Berlin as well as Coventry, Hamburg and Dresden. Just as the punctuations of the bombing saw the psychic as well as the material give way, writers portraying Britain as an ‘volcano island’ (Spaight 5) witnessed eruptive projections – the volleys of the material air-war; the emotional signature of charged and bitter reprisals; pain, anguish and vengeance - counter-strikes of affect. In the midst of all of this molten violence and emotion it seems impossible that a simultaneous sense of quiescence could be at all possible. More than mere physical fixity or geographical stasis, a rather different sort of experience could take place. Preceding, during and following the excessive mobilisation of an air raid, ‘stillness’ was often used to describe certain plateuing stretches of time-space which were slowed and even stopped (Anderson 740). Between the eruptions appeared hollows of calm and even boredom. People’s nervous flinching under the reverberation of high-explosive blasts formed part of what Jordan Crandall might call a ‘bodily-inclination’ position. Slackened and taut feelings condensed around people listening out for the oncoming bomber. People found that they prepared for the dreadful wail of the siren, or relaxed in the aftermath of the attack. In these instances, states of tension and apprehension as well as calm and relief formed though stillness. The peculiar experiences of ‘stillness’ articulated in these events open out, I suggest, distinctive ways-of-being which undo our assumptions of perpetually fluid subjectivities and the primacy of the ‘body in motion’ even within the context of unparalleled movement and uncertainty (see Harrison 423 and also Rose and Wylie 477 for theoretical critique). The sorts of “musics of stillness and silence able to be discovered in a world of movement” (Thrift, Still 50), add to our understandings of the material geographies of war and terror (see for instance Graham 63; Gregory and Pred 3), whilst they gesture towards complex material-affective experiences of bodies and spaces. Stillness in this sense, denotes apprehending and anticipating spaces and events in ways that sees the body enveloped within the movement of the environment around it; bobbing along intensities that course their way through it; positioned towards pasts and futures that make themselves felt, and becoming capable of intense forms of experience and thought. These examples illustrate not a shutting down of the body to an inwardly focused position – albeit composed by complex relations and connections – but bodies finely attuned to their exteriors (see Bissell, Animating 277 and Conradson 33). In this paper I draw from a range of oral and written testimony archived at the Imperial War Museum and the Mass Observation wartime regular reports. Edited publications from these collections were also consulted. Detailing the experience of aerial bombing during the Blitz, particularly on London between September 1940 to May 1941, forms part of a wider project concerning the calculative and affective dimensions of the aeroplane’s relationship with the human body, especially through the spaces it has worked to construct (infrastructures such as airports) and destroy. While appearing extraordinary, the examples I use are actually fairly typical of the patternings of experience and the depth and clarity with which they are told. They could be taken to be representative of the population as a whole or coincidentally similar testimonials. Either way, they are couched within a specific cultural historical context of urgency, threat and unparalleled violence.Anticipations The complex material geographies of an air raid reveal the ecological interdependencies of populations and their often urban environments and metabolisms (Coward 419; Davis 3; Graham 63; Gregory The Colonial 19; Hewitt Place 257). Aerial warfare was an address of populations conceived at the register of their bio-rhythmical and metabolic relationship to their milieu (Adey). The Blitz and the subsequent Allied bombing campaign constituted Churchill’s ‘great experiment’ for governments attempting to assess the damage an air raid could inflict upon a population’s nerves and morale (Brittain 77; Gregory In Another 88). An anxious and uncertain landscape constructed before the war, perpetuated by public officials, commentators and members of parliament, saw background affects (Ngai 5) of urgency creating an atmosphere that pressurised and squeezed the population to prepare for the ‘gathering storm’. Attacks upon the atmosphere itself had been readily predicted in the form of threatening gas attacks ready to poison the medium upon which human and animal life depended (Haldane 111; Sloterdijk 41-57). One of the most talked of moments of the Blitz is not necessarily the action but the times of stillness that preceded it. Before and in-between an air raid stillness appears to describe a state rendered somewhere between the lulls and silences of the action and the warnings and the anticipatory feelings of what might happen. In the awaiting bodies, the materialites of silence could be felt as a kind-of-sound and as an atmospheric sense of imminence. At the onset of the first air-raids sound became a signifier of what was on the way (MO 408). Waiting – as both practice and sensation – imparted considerable inertia that went back and forth through time (Jeffrey 956; Massumi, Parables 3). For Geographer Kenneth Hewitt, sound “told of the coming raiders, the nearness of bombs, the plight of loved ones” (When the 16). The enormous social survey of Mass Observation concluded that “fear seems to be linked above all with noise” (original emphasis). As one report found, “It is the siren or the whistle or the explosion or the drone – these are the things that terrify. Fear seems to come to us most of all through our sense of hearing” (MO 378). Yet the power of the siren came not only from its capacity to propagate sound and to alert, but the warning held in its voice of ‘keeping silent’. “Prefacing in a dire prolepsis the post-apocalyptic event before the event”, as Bishop and Phillips (97) put it, the stillness of silence was incredibly virtual in its affects, disclosing - in its lack of life – the lives that would be later taken. Devastation was expected and rehearsed by civilians. Stillness formed a space and body ready to spring into movement – an ‘imminent mobility’ as John Armitage (204) has described it. Perched on the edge of devastation, space-times were felt through a sense of impending doom. Fatalistic yet composed expectations of a bomb heading straight down pervaded the thoughts and feelings of shelter dwellers (MO 253; MO 217). Waves of sound disrupted fragile tempers as they passed through the waiting bodies in the physical language of tensed muscles and gritted teeth (Gaskin 36). Silence helped form bodies inclined-to-attention, particularly sensitive to aural disturbances and vibrations from all around. Walls, floors and objects carried an urban bass-line of warning (Goodman). Stillness was forged through a body readied in advance of the violence these materialities signified. A calm and composed body was not necessarily an immobile body. Civilians who had prepared for the attacks were ready to snap into action - to dutifully wear their gas-mask or escape to shelter. ‘Backgrounds of expectation’ (Thrift, Still 36) were forged through non-too-subtle procedural and sequential movements which opened-out new modes of thinking and feeling. Folding one’s clothes and placing them on the dresser in-readiness; pillows and sheets prepared for a spell in the shelter, these were some of many orderly examples (IWM 14595). In the event of a gas attack air raid precautions instructions advised how to put on a gas mask (ARPD 90-92),i) Hold the breath. ii) Remove headgear and place between the knees. iii) Lift the flap of the haversack [ …] iv) Bring the face-piece towards the face’[…](v) Breathe out and continue to breathe in a normal manner The rational technologies of drill, dressage and operational research enabled poise in the face of an eventual air-raid. Through this ‘logistical-life’ (Reid 17), thought was directed towards simple tasks by minutely described instructions. Stilled LifeThe end of stillness was usually marked by a reactionary ‘flinch’, ‘start’ or ‘jump’. Such reactionary ‘urgent analogs’ (Ngai 94; Tomkins 96) often occurred as a response to sounds and movements that merely broke the tension rather than accurately mimicking an air raid. These atmospheres were brittle and easily disrupted. Cars back-firing and changing gear were often complained about (MO 371), just as bringing people out of the quiescence of sleep was a common effect of air-raids (Kraftl and Horton 509). Disorientation was usually fostered in this process while people found it very difficult to carry out the most simple of tasks. Putting one’s clothes on or even making their way out of the bedroom door became enormously problematic. Sirens awoke a ‘conditioned reflex’ to take cover (MO 364). Long periods of sleep deprivation brought on considerable fatigue and anxiety. ‘Sleep we Must’ wrote journalist Ritchie Calder (252) noticing the invigorating powers of sleep for both urban morale and the bare existence of survival. For other more traumatized members of the population, psychological studies found that the sustained concentration of shelling caused what was named ‘apathy-retreat’ (Harrisson, Living 65). This extreme form of acquiescence saw especially susceptible and vulnerable civilians suffer an overwhelming urge to sleep and to be cared-for ‘as if chronically ill’ (Janis 90). A class and racial politics of quiescent affect was enacted as several members of the population were believed far more liable to ‘give way’ to defeat and dangerous emotions (Brittain 77; Committee of Imperial Defence).In other cases it was only once an air-raid had started that sleep could be found (MO 253). The boredom of waiting could gather in its intensity deforming bodies with “the doom of depression” (Anderson 749). The stopped time-spaces in advance of a raid could be soaked with so much tension that the commencement of sirens, vibrations and explosions would allow a person overwhelming relief (MO 253). Quoting from a boy recalling his experiences in Hannover during 1943, Hewitt illustrates:I lie in bed. I am afraid. I strain my ears to hear something but still all is quiet. I hardly dare breathe, as if something horrible is knocking at the door, at the windows. Is it the beating of my heart? ... Suddenly there seems relief, the sirens howl into the night ... (Heimatbund Niedersachsen 1953: 185). (Cited in Hewitt, When 16)Once a state of still was lost getting it back required some effort (Bissell, Comfortable 1697). Cautious of preventing mass panic and public hysteria by allowing the body to erupt outwards into dangerous vectors of mobility, the British government’s schooling in the theories of panicology (Orr 12) and contagious affect (Le Bon 17; Tarde 278; Thrift, Intensities 57; Trotter 140), made air raid precautions (ARP) officers, police and civil defence teams enforce ‘stay put’ and ‘hold firm’ orders to protect the population (Jones et al, Civilian Morale 463, Public Panic 63-64; Thomas 16). Such orders were meant to shield against precisely the kinds of volatile bodies they were trying to compel with their own bombing strategies. Reactions to the Blitz were moralised and racialised. Becoming stilled required self-conscious work by a public anxious not to be seen to ‘panic’. This took the form of self-disciplination. People exhausted considerable energy to ‘settle’ themselves down. It required ‘holding’ themselves still and ‘together’ in order to accomplish this state, and to avoid going the same way as the buildings falling apart around them, as some people observed (MO 408). In Britain a cup of tea was often made as a spontaneous response in the event of the conclusion of a raid (Brown 686). As well as destroying bombing created spaces too – making space for stillness (Conradson 33). Many people found that they could recall their experiences in vivid detail, allocating a significant proportion of their memories to the recollection of the self and an awareness of their surroundings (IWM 19103). In this mode of stillness, contemplation did not turn-inwards but unfolded out towards the environment. The material processual movement of the shell-blast literally evacuated all sound and materials from its centre to leave a vacuum of negative pressure. Diaries and oral testimonies stretch out these millisecond events into discernable times and spaces of sensation, thought and the experience of experience (Massumi, Parables 2). Extraordinarily, survivors mention serene feelings of quiet within the eye of the blast (see Mortimer 239); they had, literally, ‘no time to be frightened’ (Crighton-Miller 6150). A shell explosion could create such intensities of stillness that a sudden and distinctive lessening of the person and world are expressed, constituting ‘stilling-slowing diminishments’ (Anderson 744). As if the blast-vacuum had sucked all the animation from their agency, recollections convey passivity and, paradoxically, a much more heightened and contemplative sense of the moment (Bourke 121; Thrift, Still 41). More lucid accounts describe a multitude of thoughts and an attention to minute detail. Alternatively, the enormous peaking of a waking blast subdued all later activities to relative obsolescence. The hurricane of sounds and air appear to overload into the flatness of an extended and calmed instantaneous present.Then the whistling stopped, then a terrific thump as it hit the ground, and everything seem to expand, then contract with deliberation and stillness seemed to be all around. (As recollected by Bill and Vi Reagan in Gaskin 17)On the other hand, as Schivelbusch (7) shows us in his exploration of defeat, the cessation of war could be met with an outburst of feeling. In these micro-moments a close encounter with death was often experienced with elation, a feeling of peace and well-being drawn through a much more heightened sense of the now (MO 253). These are not pre-formed or contemplative techniques of attunement as Thrift has tracked, but are the consequence of significant trauma and the primal reaction to extreme danger.TracesSusan Griffin’s haunting A Chorus of Stones documents what she describes as a private life of war (1). For Griffin, and as shown in these brief examples, stillness and being-stilled describe a series of diverse experiences endured during aerial bombing. Yet, as Griffin narrates, these are not-so private lives. A common representation of air war can be found in Henry Moore’s tube shelter sketches which convey sleeping tube-dwellers harboured in the London underground during the Blitz. The bodies are represented as much more than individuals being connected by Moore’s wave-like shapes into the turbulent aggregation of a choppy ocean. What we see in Moore’s portrayal and the examples discussed already are experiences with definite relations to both inner and outer worlds. They refer to more-than individuals who bear intimate relations to their outsides and the atmospheric and material environments enveloping and searing through them. Stillness was an unlikely state composed through these circulations just as it was formed as a means of address. It was required in order to apprehend sounds and possible events through techniques of listening or waiting. Alternatively being stilled could refer to pauses between air-strikes and the corresponding breaks of tension in the aftermath of a raid. Stillness was composed through a series of distributed yet interconnecting bodies, feelings, materials and atmospheres oriented towards the future and the past. The ruins of bombed-out building forms stand as traces even today. Just as Massumi (Sensing 16) describes in the context of architecture, the now static remainder of the explosion “envelops in its stillness a deformational field of which it stands as the trace”. The ruined forms left after the attack stand as a “monument” of the passing of the raid to be what it once was – house, factory, shop, restaurant, library - and to become something else. The experience of those ‘from below’ (Hewitt 2) suffering contemporary forms of air-warfare share many parallels with those of the Blitz. Air power continues to target, apparently more precisely, the affective tones of the body. Accessed by kinetic and non-kinetic forces, the signs of air-war are generated by the shelling of Kosovo, ‘shock and awe’ in Iraq, air-strikes in Afghanistan and by the simulated air-raids of IDF aircraft producing sonic-booms over sleeping Palestinian civilians, now becoming far more real as I write in the final days of 2008. Achieving stillness in the wake of aerial trauma remains, even now, a way to survive the (private) life of air war. AcknowledgementsI’d like to thank the editors and particularly the referees for such a close reading of the article; time did not permit the attention their suggestions demanded. Grateful acknowledgement is also made to the AHRC whose funding allowed me to research and write this paper. ReferencesAdey, Peter. Aerial Geographies: Mobilities, Bodies and Subjects. Oxford: Wiley-Blackwell, 2010 (forthcoming). 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