The good news is that Drawing Women’s Cancer project has now been officially sponsored by Cardiff University!!
Below is the text of the talk I gave at the Attentive Writers Conference in Glasgow last weekend.http://www.gla.ac.uk/schools/critical/research/conferences/attentivewriters/
My review of the conference can be found on the Durham Centre for Medical Humanities blog here: http://medicalhumanities.wordpress.com/2013/08/30/attentive-writers-healthcare-authorship-and-authority-conference-review-by-jac-saorsa/
I will be making regular posts both here and on the CMH blog throughout my time at Galveston.
The Argument of Images: Narrative diversity in cancer care Just to introduce myself, I am a visual artist with a background in philosophy, and a passion for exploring the complexities of existential subjectivity, and most especially with what I see as the inescapable conflict between robustness and frailty in terms of our engagement with the perceived reality of our world. I work with the body as form and with the psyche as content. I draw, paint, I write and I ‘attend’ to the manner in which my own lived experience is both influenced and reflected by that of the ‘other’. I understand my practice as a whole therefore as a kind of creative multilingualism, a process, a perpetual dialogue that derives from an interpenetrative symbiosis between visual and conventional language and which reflects a far more fundamental narrative, the subtext that underwrites our existence both as individuals and in relation to the ‘other’.
In this talk, I would like to address the conference theme of ‘attentiveness’ in terms of this process-oriented creative practice and I will discuss an ongoing interdisciplinary research project, Drawing Women’s Cancer, that is fundamentally premised in the conceptual and methodological ethos of narrative medicine but which extends this ethos by way of visual practice. As such, I will borrow James W. Fernandez’ concept of the ‘argument of images’, in order to offer a challenge to the idea of ‘attentiveness’ as being specifically related to writing, although I want to make clear at the same time that such a challenge does not deny narrative itself as indeed the powerful ‘magnet and a bridge, attracting and uniting diverse fields of learning’ that Rita Charon describes. My focus here is on what I understand as the profoundly inclusive nature of narrative, wherein writing and imagery can be understood as equal in terms of their capacity for generating dialogue, in this case between creative practice and scientific intervention.
My involvement as an artist, and more fundamentally as a human being, with the ‘other’s’ lived experience of cancer takes me to a particular part of our world that Sontag describes as the ‘kingdom of the sick’. Women with gynaecological cancer, citizens of this kingdom, welcome me as a kindred soul, even though they know I live, without pain, in the ‘kingdom of the well’. These women understand that actually we all hold ‘dual citizenship’, and through listening to and immersing myself in their stories, I share their certain, yet often unacknowledged sense that divisibility between objectivity and subjectivity is impossible in terms of experience. Thus, while we all have a stake in both the kingdoms of the sick and of the well, and where it may seemthat only time, fortune and biomedical intervention allows us to mediate between the one and the other, the aim of Drawing Women’s Cancer is to elicit a deeper general understanding of individual subjectivity as it is experienced in the former, and within societal norms and expectations. As much therefore as I owe to seminal writings that reflect on human suffering in terms of illness in general, I also refer here to the personal narratives of illness shared with me by women who have been so generous with their time and their trust, and to whom I owe a sincere debt of gratitude.
The Drawing Women’s Cancer project derives from the idea that visual art, produced by an artist working on the basis of conversations with cancer patients and health professionals, creates unique representations of the sufferer’s experience that can enable deeper understanding and therefore further conversations between patient and physician, between patients and their carers, and within the public arena in terms of awareness of the disease and its impact. Moreover, where gynaecological disease has almost a ‘taboo’ status in society due to the intimate and personal implications of the condition’s bodily location, such representation, and the conversations it encourages, can serve to promote feelings of entitlement to discuss it more openly. So, Drawing Women’s Cancer itself draws on an interdisciplinary strategy where the theoretical and methodological premises of narrative medicine are extended through visual art practice in order to engender a deeper consciousness of the existential ‘lived’ experience of women’s cancer as it relates to both physiological and emotional health.
Following Lewis’s assertion that ‘narrative deals with experience not with propositions’ (Charon 2006: 9), and based on Bruner’s concept of narrative facilitating shared knowledge and understanding (Bruner 1986) women cancer patients’ ‘personal narratives’ generated through our mutual ‘encounters’ in conversation provide me with the reference material from which I create explorative drawings. The conversations themselves are very much led by the patient. Although I am a trained therapist, the purpose of the project is in no way to provide formal counselling but rather to develop the trust and empathy that allows me to engage sensitively with a woman’s lived experience as she narrates it. There is therefore no prescribed set of questions as the objective is to elicit the individual’s unique understanding of her illness experience through allowing her time and space to tell her story in her own way. Assumed recognition of feelings – ‘I know how you feel’ – or sympathy, however well meant, is of no use here. I cannot presume to recognise the patient’s actual pain, I can only share in it by being attentive to it, by listening. I respond to her individual suffering not by attempting to identify with her pain – this would be pointless and demeaning for us both – but by involving myself in her experience, as she understands it, through the construction my own understanding, which is derived in turn from my own experience of listening to what she is saying. I record the conversations and later transcribe them as part of the process either mechanically verbatim or, more subjectively, as a basis for further narratives that explore this personal engagement with the experience of the ‘other’. All the documentation serves as the basis for the drawing process wherein attentiveness is exemplified and extended in the dialogue that is invoked through the creative act.
The facility of narrative to interrelate verbal communication and the act of drawing, where conventional language is translated through my creative response into visual language, defines its fundamental importance. This is made clear in the analogous relations between ‘data’ – the transcripts – and process, and the two primary narrative forms, linear and non-linear. Linear narrative, fundamentally sequential and premised on logic with a beginning, middle and end, is the form in which the patients ‘tell their stories’. Non-linear narrative however, eschews logic and its characteristic contradictory elements – interruption, circular and/or unfinished references and ‘chronological anarchy’ – are all evidenced in the creative process wherein drawings often ‘become’ in their own right far more than I, in creating them, ever expected as I try to capture the nuances of narrative in and in-between lines, tones, and layers of colour. The drawings are therefore more explorative than interpretive and where Deleuze asserts that people are made up of varied lines – indeed there is a whole ‘geography’ in people – I seek through the drawing process to explore new landscapes and chase new horizons.
Most importantly here, and where attentiveness takes on its most fundamental role, the interrelation between linear and non-linear narrative gives rise to a third language, neither fully verbal nor visual, which is itself generated in a complex and creative continuum between objective understandings of disease and more subjective understandings of the experience of illness. Derived from the complex continuum wherein one language is mapped onto another, this third language is manifest as simultaneous point of difference and correspondence. It is an independent, self-authored ‘meta-narrative’, a ‘telling’ that is beyond both the verbal articulation of personal experience and the dialogical process that dictates the nuances of art practice.
A language of course needs speakers to give it life, and spoken stories are indeed the driving force of Drawing Women’s Cancer, but a language also needs listeners. I am a listener, and as I engage directly and attentively with the experience of the patient speaker I am also a responder, but at the same time as dialogue dictates my creative process it is the meta-language that the process itself evokes that goes beyond the parameters of my own experience. It is the meta-language that provides the narrative catalyst for meaningful engagement with the overall impact of gynaecological disease women’s lives through its capacity to embrace the combined perspectives of the speaker patient, the responder artist, and the public ‘listener’, or more precisely, viewer of the drawings. It is the meta-language that comes alive through the viewer’s individual and subjective experience of the drawings and the continuing dialogue that this experience provokes. Where, through listening and through drawing I personally come to appreciate, understand and thus participate, with profound empathy, in the experiences that the drawings attempt to communicate, through looking and responding in turn, the viewer has the opportunity to do the same. The dialogue continues.
The pilot study for the Drawing Women’s Cancer project as a whole was carried out last year. The Speaking the Unspeakable study addressed pre-cancerous vulval neoplasia and began from the premise that a combination of easier access to patient-focused information about symptoms and treatment, along with a greater public awareness and acceptance of vulval disease as a rare yet debilitating condition, would potentially lessen patients’ experiences of isolation and associated problems. Building on the principle that such a combination could be realised through an innovative and collaborative initiative based on controlled interventions and intersections between narrative medicine, contemporary drawing practice and medical science, our introduction of a visual artist’s perspective into current gynaecological cancer treatment in Wales culminated in a very successful exhibition at the Senedd, the Welsh Assembly building in Cardiff last November.
As my practice as a whole is never exclusive in terms of either visual or conventional language, my argument of images here serves to attest the validity of a visual approach to attentiveness although this is not to suggest that it is the only approach. Indeed, for Linguist Einar Haugen, ‘many ideas do come in extra-linguistic form, as images’ but he also acknowledges, that simply because images representing experience can be in themselves extra-linguistic, this is not to discount language per se. With the Drawing Women’s Cancer project we are proposing that a visual engagement with the experience of illness through drawings that are derived from my experience and interpretation of the patients’ personal narratives (which are themselves interpretations of experience), is a multi-layered process that can be defined not as an alternative to the written or spoken word, but more as a methodological ‘visual extension’ of narrative medicine. Speaking the Unspeakable has produced a valid testimony both to the adaptability of the narrative medicine paradigm and to the efficacy of a qualitative approach to the complex relation between scientific intervention and person-centred emotional experience. Visual representation here becomes itself a form of ‘attentive’ creativity, manifest in an interlanguage that can indeed ‘speak the unspeakable’.
The art-science path is well trodden, but through the Drawing Women’s Cancer project as a whole, we hope to leave some new footprints that will lead to a greater general awareness and understanding of cancer, not just in the objective sense as a disease that must be treated, but also in the profoundly subjective intuition of the sufferer’s ‘lived’ experience. It is such awareness and understanding that gives rise to empathy over sympathy and this in itself is a paradigm for change. The project already has an online presence in the form of a website and an ‘artists blog’, and as we now have confirmation from Cardiff University of their formal sponsorship of the project as a whole we can go forward and seek major funding to continue and develop the work. In the meantime and I am very excited to have been invited as a visiting scholar at the University of Texas Institute of Medical Humanities for October and November this year to draft an illustrated monograph of Speaking the Unspeakable for publication.
I would like to conclude this talk, with a nod of due respect to the specific theme of this conference, with two short extracts from pieces of writing I did in response to specific experiences during the initial stages of the Drawing Women’s Cancer project. The first was written after I attended a Gynaecological Survivorship Event at the very beginning of the project. The second was written in response to an encounter I had with an elderly patient who spoke with me minutes before undergoing radical surgery on her vulva for the second time. The first experience made me realise how much the Drawing Women’s Cancer project could potentially do towards increasing and enhancing awareness and therefore empathic communication about the disease, and the second experience movingly confirmed for me the necessity and importance of doing so.