Landscape of Altered Being: : Autopathography and Embodiment in When Breath Becomes Air

Autopathography is described as an autobiographical narrative that revolves around the subjective experience of illness, often complementing or challenging the medical narrative of the disease. Since disease, by definition, affects the body of the organism, autopathographies concentrate on the broader phenomenon of illness. Illness is described as the overall impact of disease not simply on the body but on socio-cultural and personal systems relating to oneself. Paul Kalanithi’s narrative of lung cancer, When Breath Becomes Air, charts his life as a physician and patient; Kalanithi’s description illustrates that illness becomes an unrecognizable landscape of altered being. Using a phenomenological approach with concepts of embodiment, this paper attempts to re-ascertain the centrality of embodiment to the multiple aspects of our experiential reality. The reality we witness emerges from the embodied nature of our experience, making wellbeing and illness the context for everything. This paper elaborates on the thirdspace of autopathography as fundamental to making sense of the drastic alteration in one’s lived experience

Autopathographies: how "Sick Lit." shapes knowledge of the illness experience

I had the honour of being a member of the first class of MSc students in Medical Anthropology in Oxford in 2001. During the MSc I became interested in the intersections of medical anthropology and public health, particularly in considering how medical anthropology theory can be operationalized to improve public health program evaluation. I went on to complete a PhD in Anthropology and a Master's of Public Health in International Health from Boston University, where my research focused on the long-term impacts of oral rehydration therapy campaigns in highland Guatemala. I then spent a year working with Arthur Kleinman at Harvard University and, drawing on the foundational knowledge I gained from the MSc, became further interested in illness narratives. I conducted postdoctoral research on illness narratives through the Oxford Autopathographies Project, described here. I continue to investigate primary health care delivery in Guatemala and co-direct the NAPA-OT Field School in medical anthropology. I am currently Assistant Professor of Anthropology and Public Health at Agnes Scott College in Atlanta, Georgia

Autopathography

For centuries the stories of disabled people were not our own to tell. We were silenced by politics and power dynamics beyond our control, and when we succeeded it was “in spite of” our disabilities. I am interested in the reframing of this narrative and discovering my place in this historic trajectory. I am a disabled artist. I have claimed this identity. It is critical that this identity remains tied to my work as I navigate the worlds of fine art, academia, and critical theory. My art is intrinsically tied to my academic work. They are inseparably bonded through my sense of identity. My visual art creates an expansive body of self-portraiture which is supported by my writing and theoretical contributions

The doctor as patient : a thematic analysis of physician autopathographies on cancer

This thesis documents an investigation into the literary genre of physician autopathography-physician-authored autobiographical accounts of personal experience with illness/disease, injury or disability. At a general level, it explores potential explanations for the growth of this genre over the last 25 years. In addition, it compiles the first known bibliography of physician autopathography. At a more detailed level, through comprehensive thematic analysis of nine selected autopathographies on cancer, this thesis provides the foundation for a taxonomy to capture the manner in which the physician authors respond to the illness experience across their dual roles of patient and doctor. Three main categories are revealed and elaborated. Five authors are high-doctor/low-patient (DOCTOR/patient), four are high-doctor/high-patient (DOCTOR/PATIENT), and one is low-doctor/high-patient (doctor/PATIENT). The DOCTOR/patients cling fast to the doctor role. They are least accepting of the necessary transition to patienthood and most vocally rebel against it. They maintain an active, authoritative physician persona throughout their experience with cancer. The DOCTOR/PATIENTS position themselves with one foot on each side of the so-called dividing line between the physician role and the patient role. Their illness is met with resistance because of their status as physicians, but they are also more willing or able than the DOCTOR/patients to accept the vulnerabilities the transformation to patient brings. The doctor/PATIENTS show only vestiges of the physician role in the experience of illness. They are the most accepting of the patient’s passive status and demonstrate the smoothest transition from the role of doctor to that of patient

"To seize the copyright in myself" : "giving up the ghost" by Hilary Mantel as an exercise in autopathography

Though Wolf Hall and Bring Up the Bodies, two Man Booker Prize-winning historical novels by Hilary Mantel, ostensibly deal with the life of Thomas Cromwell, a chief minister to King Henry VIII, their major motif, I should argue, is that of disability, of illness, of bodily failure. As Mantel herself stated in an essay titled "Royal Bodies," "historians are still trying to peer inside the Tudors, (…) are they healthy, are they sick, can they breed?" She further added: "The story of Henry and his wives is peculiar to its time and place, but also timeless and universally understood; it is highly political and also highly personal. It is about body parts, about what slots in where, and when: are they body parts fit for purpose, or are they diseased?" (Mantel 2013) Bodily dysfunction appears to me to be one of primary thematic preoccupations of Mantel’s writing. Handicapped Muriel from Every Day is Mother’s Day, disfigured "Irish giant" O’Brien from The Giant, O’Brien, ailing Henry VIII from her Tudor triptych– these are just a few of a panoply of disabled/ill/afflicted characters that populate the pages of Mantel’s work. The aim of the present paper is to examine Mantel’s 2003 memoir entitled Giving Up the Ghost which tells the story of the writer’s struggle with endometriosis as well as doctors’ indifference and medical neglect. I will attempt to discuss Mantel’s autobiographical account not only as a narrative about the writer’s illness, but as a work which investigates interrelatedness of writing and suffering, and which tries to both make sense and take charge of one’s life story which has been otherwise claimed by the demands and limitations of an ailing body. In short, I wish to see Mantel’s memoir as an exercise in autopathography

Stigma, Confinement, and Silence : On the Precarious Life and Death of John Derby

In this commentary, we take seriously the question of what does it mean to be in a precarious position and a precarious subject within educational institutions. Structured around three concepts, Stigma, Confinement, andSilence we discuss the life and death of art education scholar and colleague, John Derby. We attempt to address how John’s scholarship helped other researchers in art education orientate themselves and take a critical stance based on disability studies

Hanging with the ‘The Chronics’ Online: Autopathography and Narrative Associations in an Online Support Group for Chronic Lymphocytic Leukemia

This paper forms part of the digitally archived conference proceedings from the Understanding Chronicity Conference at Mansfield College, Oxford University in August, 2012. Presenting early findings from a two year project mapping narrative engagement, mediation and translation in online networks of chronic lymphocytic leukemia patients and carers, the study explores a range of narrative forms online including multi-media patient stories, medical research papers, and clinical test results. The work triangulates autopathography with observations drawn from around 300 consenting CLL patients globally to map current issues for this patient group and their carers, illuminating the evolving phenomenon of e-patienthood in a rapidly evolving biomedical environment. An actor network approach facilitates mapping of complex scientific research papers, laboratory test results, and the political economy of contemporary medicine intersect with patient stories, observation and advice across multi-media platforms online. The paper outlines key emerging sites in the current landscape of CLL patients, and considers how they extrapolate to chronic illness experience generally in a digital era. Finally, the work addresses creative ethical approaches to the presentation of complex assemblages of data reflecting the multiplicity of texts and experiences involved in understanding, and living with disease. The work’s emphasis on the ways in which patient-connectedness is replacing patient centredness has been picked up by a significant contributor to the study of medical humanities and cited with attributions in a forthcoming major textbook on the subject, currently in publication. Early findings have contributed to the re-design of the website of a major leukemia support site. Several major support sites globally have expressed interest in the work, and have requested to contribute their perspectives to what will be the largest scale work on CLL of its type to date, and a significant contribution to actor network methodologies and an understanding of disease experience in the digital age