Technology Disability and Identity
Description of proposed project
In ‘Surgical Ward’ W H Auden memorably described ‘The treatment that the instruments are giving’, while isolated patients ‘lie apart like epochs from each other’. Our project aims to bring together accounts of and by those using, or refusing, technological intervention including medical prosthetics, so that each may understand the other more clearly. It explores the ways in which patients and physicians account for their own situation before, during and after surgery, each recuperating an amputated identity in the face of potentially objectifying medical impulse. We will focus on the impact of technology on the perception of well being and identity in patients with a life-limiting disease (such as pulmonary hypertension) and with potentially life-enhancing devices (supplementing various losses). Increasing uses of technology to provide information (DVDs, internet) are associated with different levels of accessibility to patient groups, with the potential to provide too much, or too little, or inaccurate information that may not be readily scaleable to individual needs. The diagnosis is made technologically with invasive measurements and complex non-invasive imaging, with potential for these approaches to reassure patients (cutting edge technology, mystique of technological medicine), or to dehumanize the diagnosis and lead to anxiety (it’s all too complicated to understand). Increasingly technological treatments with technological nebulizer devices or permanent indwelling lines and continuous drug infusions prolong life and improve symptoms, but with age, gender, sexuality, racial and personality-related issues that affect acceptability, uptake, therapy success rates, and safe illness behaviours. It is not clear if these new approaches are generating new issues, or if the concept of modern technology has always been with us, but the individual manifestations of it change with each generation. Anecdotal evidence suggests technological approaches to treatment may be appealing to the technological generation, but equally over-confidence with technological therapies can be associated with lack of awareness of important risks. Objective and accurate descriptions of the impact of technology in diagnosis, information provision, and management of a life-threatening disease are lacking.
At the same time, writers employ ‘autopathographical’ techniques to describe their own experiences (Thomas Couser’s term in Recovering Illness: Illness, Disability and Life-Writing); these are often counter-discursive to biomedical narratives, and describe ‘colonized’ characters who hand over their bodies and life-stories to medical authorities. Some resist the use of prosthetics. Audre Lorde, for example, wrote of their ‘lies, tricks’ and the ways in which they disguise pain and promote an image of normative femininity (‘Breast Cancer: Power vs. Prosthetics’). The activist-artist Matuscka has photographed her own body after surgery: ‘Beauty Out of Damage’ appeared on the cover of the New York Times magazine, and in turn was adapted for a Greenpeace campaign on ‘prevention’; ‘The Ruins’ explores the role of creative-invasive technology in self-presentation. Creative writers likewise investigate technologists: Ann Harleman’s ‘Thoreau’s Laundry’ explores the effects of maxillofacial prosthetics, while AS Byatt’s ‘Body Art’ features a sculpture of prosthetic artifacts and a doctor who describes his business as ‘flesh, its making, mending and unmaking’.
We aim to use self-writing methodologies to account for the impacts of technological approaches to disease on bodies and identities. We bring together physicians and patients, draw on medical as well as literary and visual accounts, to explore how historical as well as current contexts of technological ‘advance’ shape personal narratives. In so doing we investigate paradigms of ‘detachment’ (literal and physical; in patients and physicians) and, conversely, the emerging medical emphasis on emotional engagement as a diagnostic tool. We aim, then, to bridge the imaginative and linguistic gap identified by Auden: to link the ‘ common world of the uninjured’ with that of those who ‘are and suffer, that is all they do’.The project is further interested in the impact of technological intervention on patients and professionals. How does technology impact on how professionals view their patients? Does technology risk objectifying patients in ways that works against the more patient-centred practices in medicine? How do patients conceptualise their relationships with technological intervention? What kinds of stories are told about technology and disability? Can we develop translational approaches from these stories to inform clinical teams and patients equally and change outcomes for patients with disease? Will changing perceptions of the roles of technology impact on medical professionals and their perception of the illness and the place of the patient in diagnosis and management? The proposed supervision team will be led by Dr Hallett, whose research focuses on auto/biography and self-writing across different historical periods, and who has a long term interest in the impact of technology on disability. Prof Sabroe will provide a detailed understanding of medical issues around a rare and life-limiting illness (pulmonary hypertension), and will form the link to direct access to patients, the full multidisciplinary clinical team (expert medical and nursing staff, pharmacists, radiologists, for example), as well as facilitating contact with national patient support networks.
We aim to explore the paradox that those who suffer and those who aim to alleviate pain both experience alienation: from themselves and the other who is suffering. For patients, ‘Truth … is how much they can bear’; for physicians , theirs ‘is not talk like ours, but groans they smother’, as W H Auden put it, in ‘Surgical Ward’. Technologies designed to bridge the gap between patients’ and physicians’ realities themselves sometimes compound the situation, separate them still further, from themselves and from their diagnosis. We bring together practitioners and patients, to explore their parallel stories, focusing on the role and representation of technology in their ‘autopathographies’ (making use of Thomas Couser’s term for the ways in which biomedical and personal stories diverge and intersect). Our project aims to bring together accounts of and by those using, or refusing, technological intervention including medical prosthetics, so that each may understand the other more clearly. Some life-threatening diseases, like pulmonary hypertension, have increasingly complicated technological aspects to their diagnosis and management. Very complicated and potentially frightening diagnostic tests are complemented by life-saving but advanced treatments, that can require life-long continuous intravenous infusions of drugs. In parallel with the medical technology, modern technology is also having massive impacts on the information available to patients and their perception of their illness. These modern advances have equal opportunities to empower patients and disadvantage them, as they come to terms with a complex and life-changing illness. Although it may appear that the technology employed to treat this condition (body scanners, direct pressure measurements of heart function, continuous intravenous drug treatment) is entirely new, the concept of technological evolution has always been present in medicine and always been intimidating and empowering in equal measure. This project will explore the individual patient experience and the impact of technology on their perceptions of their illness and their life, sense of well being, and sense of individuality and humanity. Through these explorations, we will learn to understand the impact of technology on health and well being and personal identity, and learn again how to place the patient at the heart of patient care.
Professor Ian Sabroe is a consultant in respiratory medicine in the Pulmonary Vascular Disease Unit, and has been a consultant since 2000. He is a biomedical scientist, and has supervised 9 students to the award of their PhD. He is currently a primary or secondary supervisor to 4 students in his lab. He has examined 18 PhDs as external examiner and 5 PhDs as internal examiner. Alongside Prof Phil Withington in History, he has recently founded Medical Humanities Sheffield, the proposed new Centre for the integration and study of medicine and the humanities in Sheffield.
Dr Nicky Hallett is a Senior Lecturer in English. She currently supervises 3 PhD students in their first, second and third years of research on literary and auto/biographical material, one of whom was awarded a British Library/ University of Sheffield studentship for Nicky’s project on the biography of early modern nuns. She previously supervised 6 other PhD students at the University of Kent (2 successfully completed, and 4 on-going, transferring to other supervisors, when she moved to the University of Sheffield in 2007) She was co-founder and co-director of the Centre for Gender, Sexuality & Writing at the University of Kent, convenes the Sheffield Death Group and is a member of the Advisory Panel for the proposed Centre for Medical Humanities at Sheffield.