Under the carpet : the politics and trauma of patient harm

Few studies have investigated iatrogenic outcomes from the viewpoint of patient experience. To address this anomaly, the broad aim of this research is to explore the lived experience of patient harm. Patient harm is defined as major harm to the patient, either psychosocial or physical in nature, resulting from any aspect of health care. Utilising the method of Consensual Qualitative Research (CQR), in-depth interviews are conducted with twenty-four volunteer research participants who self-report having been severely harmed by an invasive medical procedure. A standardised measure of emotional distress, the Impact of Event Scale (IES), is additionally employed for purposes of triangulation. Thematic analysis of transcript data indicate numerous findings including: (i) difficulties regarding patients‘ prior understanding of risks involved with their medical procedure; (ii) the problematic response of the health system post-procedure; (iii) multiple adverse effects upon life functioning; (iv) limited recourse options for patients; and (v) the approach desired in terms of how patient harm should be systemically handled. In addition, IES results indicate a clinically significant level of distress in the sample as a whole. To discuss findings, a cross-disciplinary approach is adopted that draws upon sociology, medicine, medical anthropology, psychology, philosophy, history, ethics, law, and political theory. Furthermore, an overall explanatory framework is proposed in terms of the master themes of power and trauma. In terms of the theme of power, a postmodernist analysis explores the politics of patient harm, particularly the dynamics surrounding the politics of knowledge (e.g., notions of subjective versus objective knowledge, informed consent, and open disclosure). This analysis suggests that patient care is not the prime function of the health system, which appears more focussed upon serving the interests of those in the upper levels of its hierarchy. In terms of the master theme of trauma, current understandings of posttraumatic stress disorder (PTSD) are critiqued, and based on data from this research as well as the international literature, a new model of trauma is proposed. This model is based upon the principle of homeostasis observed in biology, whereby within every cell or organism a state of equilibrium is sought and maintained. The proposed model identifies several bio-psychosocial markers of trauma across its three main phases. These trauma markers include: (i) a profound sense of loss; (ii) a lack of perceived control; (iii) passive trauma processing responses; (iv) an identity crisis; (v) a quest to fully understand the trauma event; (vi) a need for social validation of the traumatic experience; and (vii) posttraumatic adaption with the possibility of positive change. To further explore the master themes of power and trauma, a natural group interview is carried out at a meeting of a patient support group for arachnoiditis. Observations at this meeting and members‘ stories in general support the homeostatic model of trauma, particularly the quest to find answers in the face of distressing experience, as well as the need for social recognition of that experience. In addition, the sociopolitical response to arachnoiditis highlights how public domains of knowledge are largely constructed and controlled by vested interests. Implications of the data overall are discussed in terms of a cultural revolution being needed in health care to position core values around a prime focus upon patients as human beings.

The politics of literacy in David Almond and Dave McKean’s "The Savage" (2008)

Competency in language and literacy are central to contemporary debates about education in Anglophone nations around the world. This paper suggests that such debates are informing not just educational policy but children’s literature itself as can be seen in Almond and McKean’s The Savage. This hybrid text combines prose and graphic narrative and narration in order to tell the story of Blue, a young British boy negotiating his identity in the aftermath of his father's death. While foregrounding a narrative of ideal masculinity, The Savage enacts and privileges a formal and thematic ideal of literacy as index of individual agency and development. Almond and McKean produce a politicised understanding of language and literacy that simultaneously positions The Savage in a textual tradition of socio-culturally disenfranchised youth, and intervenes in that tradition to (perhaps ironically) affirm the very conditions previously critiqued by that very tradition. Where earlier authors such as Barry Hines sought to challenge normative accounts of language and literacy in order to indict educational policy and praxes, Almond and McKean work to naturalise the very logics of education and agency by which their protagonist has been disenfranchised. In doing so, The Savage exemplifies current approaches to education which claim to value social and cultural diversity while imposing national standardised testing predicated on assumptions about the legitimacy of uniform standards and definitions of literacy.

Narrative on a doctoral narrative : reflections on postgraduate study and pedagogy

This paper explores the stages of one student’s intellectual journey through a Doctor of Philosophy program of study in an Australian university. It outlines the theoretical and methodological insights made as she came to understand that data was discourse, entailing a politics and position of power that ran contrary to the aims of the study that the student was undertaking in and on her own community. The article is a reflective narrative produced from the experience of having to come to terms with some of the personal and professional tensions and contradictions that postgraduate study can, and maybe should, engender if it is to be any of real value.

'In the hands of the Receivers': The Politics of Literacy in The Savage by David Almond and Dave McKean

David Almond and Dave McKean's The Savage is a hybrid prose and graphic novel which tells the story of one young man’s maturation through literacy. The protagonist learns to deal with the death of his father and his own 'savage' self by writing a graphic novel. This article reads The Savage in the context of earlier, 'Northern' literacy narrative - particularly Tony Harrison's poem "Them & [uz]" and Barry Hines' Kes — through the discourse of neoliberalism and the notion of the reluctant boy reader. It is suggested that Almond and McKean are influenced by currently dominant ideologies of gender and literacy.

Et tu, George? Campaign journalism and the politics of compromise

There is a category of film about journalism in which journalism is not the star, but the supporting player, and journalists not the protagonists but the Greek chorus, commenting on and also changing the realities they report. In such films the news media are a structuring presence driving the plot, shaping the narrative, constructing what we might think of as a pseudo-reality. Like Daniel Boorstin’s notion of the pseudo-event (introduced in his still-relevant book The Image, 1962), this pseudo-reality is so-named because it would not exist were it not for the demands of the news media’s hunger for stories, and knowledge of the damage they can do with those stories, on the calculations and actions of the key actors. Pseudo-realities form as responses to what political actors think journalists and their organisations need and want, or as efforts to shape journalistic accounts in ways favourable to themselves. Films about politics often feature pseudorealities of this kind, in which the events and actions driving the plot have only a tenuous relationship with important things going on in the everyday world beyond the political arena. Everything we see is about image, perception, appearance.

The remediation of the personal photograph and the politics of self-representation in digital storytelling

Over the past couple of decades, the cultural field formerly known as ‘domestic’, and later ‘personal’ photography has been remediated and transformed as part of the social web, with its convergence of personal expression, interpersonal communication, and online social networks (most recently via platforms like Flickr, Facebook and Twitter). Meanwhile, the Digital Storytelling movement (involving the workshop-based production of short autobiographical videos) from its beginnings in the mid 1990s relied heavily on the narrative power of the personal photograph, often sourced from family albums, and later from online archives. This paper addresses the new issues arising for the politics of self-representation and personal photography in the era of social media, focusing particularly on the consequences of online image-sharing. It discusses in detail the practices of selection, curation, manipulation and editing of personal photographic images among a group of activist-oriented queer digital storytellers who have in common a stated desire to share their personal stories in pursuit of social change, and whose stories often aim to address both intimate and antagonistic publics.

The Politics of Sex Trafficking : a Moral Geography

This book offers a unique insight into the moral politics behind the making of human trafficking policy in Australia and the United States of America. As governments around the world rush to meet their international obligations to combat human trafficking, a heated debate has emerged over the rights, wrongs, and harms of prostitution, and its relationship to sex trafficking. The Politics of Sex Trafficking identifies and challenges intrinsic notions of moral harm that have pervaded trafficking discourse and resulted in a distinctly anti-prostitution agenda in trafficking policy in recent decades. Including rare interviews with key political actors, this book charts the competing perspectives of feminist, faith-based, and sex-worker activists, and their efforts to influence policy-makers. This critical account of the creation of anti-trafficking policy challenges the sex trafficking narrative dominant in US Congressional and Australian Parliamentary hearings, and demonstrates the power of a moral politics in shaping policy. This book will appeal to academics across the fields of criminology, criminal justice, law, human rights and gender studies, as well as policy-makers.

Disability, public space performance & spectatorship : Unconscious performers

Why would disabled people want to re-engage, re-enact and re-envisage the everyday encounters in public spaces and places that cast them as ugly, strange, stare-worthy? In Disability, Public Space Performance and Spectatorship: Unconscious Performers, Bree Hadley examines the performance practices of disabled artists in the US, UK, Europe and Australasia who do exactly this. Operating in a live or performance art paradigm, artists like James Cunningham (Australia), Noemi Lakmaier (UK/Austria), Alison Jones (UK), Aaron Williamson (UK), Katherine Araniello (UK), Bill Shannon (US), Back to Back Theatre (Australia), Rita Marcalo (UK), Liz Crow (UK) and Mat Fraser (UK) all use installation and public space performance practices to re-stage their disabled identities in risky, guerilla-style works that remind passersby of their own complicity in the daily social drama of disability. In doing so, they draw spectators' attention to their own role in constructing Western concepts of disability. This book investigates the way each of us can become unconscious performers in a daily social drama that positions disability people as figures of tragedy, stigma or pity, and the aesthetics, politics and ethics of performance practices that intervene very directly in this drama. It constructs a framework for understanding the way spectators are positioned in these practices, and how they contribute to public sphere debates about disability today.