The art of dis-ease

Eugenie Lee, Seeing is Believing, 2016, multimedia participatory installation. Photo: Silversalt Photography. © Eugenie II Jin Lee/Licensed by Viscopy, 2017

I have lifted the title for this essay from Narratives of Dis‑ease (1990), a series of works by the late British photographer Jo Spence. The series was made following the artist’s partial mastectomy for the treatment of breast cancer. Closely‑cropped around her body, the photographs show Spence partially nude, using props and performing emotive gestures, compositions and sight gags that were suggestive of the sub‑titles she ascribed to each individual image: Expunged, Exiled, Included, Excised and Expected.

Narratives of Dis‑ease addressed the psychological toll of illness and the burden of the cancer patient in performing normative social behaviours. Through her photographs, Spence confronted the underrepresentation of the medical patient experience and the disappearance of the patient body from Western culture. In this series, the shock of seeing the artist’s body transformed by cancer held the potential for surprise to transmute to empathy, and an understanding of the psychic trauma that accompanies such radical change. As Spence said, “I put up these photographs of my illness and progress and I got no feedback from anyone ... I felt as if I were in a madhouse. I thought ‘Don’t you understand that I might be dying—that I’ve put up this work on the wall to help other people see that there are other ways to think about this illness?’ And additionally, ‘This isn’t just an art work. This is an actual body that someone inhabits.’”[1] 

Of course, this possibility is highly subjective, and some viewers of the work today still cover their eyes and avert their gaze. While we are historically distanced from theories of medicine which include the Cartesian split of the mind and body, and the idea of the “body as machine”—that defective organs can simply be replaced by healthy substitutes—our institutions and our attitudes towards healthcare operate largely through distinct categories and specialisations, that do not necessarily connect with one another. In my research of artists working at the intersections of art and medicine, recent projects by Australian artists John A. Douglas, Eugenie Lee and Vic McEwan uncover medical patient experiences of psychological distress and mental anguish as part of living through disease and illness. By various means and methodologies, their works traverse and draw together the separate terrains of mental health and general health via the bodies of patients, and with the support and collaboration of medical treatment and research contexts.

John A Douglas, Styx, 2014
John A Douglas, Styx, 2014, LED Lightbox, rechargeable batteries, timber, acryclic. Courtesy the artist and Chalk Horse, Gallery, Sydney. © John A Douglas/ Licensed by Viscopy, 2017

As a long‑term, chronically ill patient with renal failure and a successful kidney transplant, artist John A. Douglas has been making work that engages directly with his experience of illness for the past seven years. In a trilogy of works called Body Fluid (2010–13), The Visceral Garden (2013) and Circles of Fire (2016–17), Douglas employs his own body to perform movement and actions that replicate his treatment and surgeries, while using video footage and photographs taken in extreme natural landscapes, to illuminate the psychological geography of this experience.

In Body Fluid II, Redux (2013) Douglas conducted a number of live performances of his peritoneal dialysis treatment—of ten hours duration—framed by three video projections, arranged like an elaborate altarpiece of his “gold man” character traversing inhospitable Australian environments: the desert, the saltpan and the snow‑capped Snowy Mountains.[2] Through this work, Douglas presented his illness as a literal alienation, casting himself as a lonely humanoid, dependent upon life support to survive, and limited in his movements by the length of the catheter attaching his abdomen to the dialysis machine.

After undertaking research for a year at the Museum of Human Disease at the University of New South Wales, Douglas made The Visceral Garden, a three‑channel video work which utilised the high‑resolution photographs he had taken of the museum’s pathology collection, including all of the diseased tissues and organs he knew to be inhabiting his body at the time, from the Glomelular Nephritis of his kidney to Osteoporosis in his bones. The garden implied in the title was rendered as a digital collage of a body, re‑configured as an inescapable underworld, inhabited by Douglas’ character. The work makes structural, sequential use of the nine circles of Dante’s inferno, into which the “red man” is consumed.

John A Douglas, Circles of Fire: Variations, 2016–17, two-channel video with sound. Courtesy the artist and Chalk Horse Gallery. © John A Douglas/Licensed by Viscopy, 2017

His most recent work Circles of Fire: Variations navigates the post‑operative, mental and physical repercussions of living with another person’s organ, and the effects of immunosuppressant drugs on the transplant patient (which causes neurotoxicity in seventy percent of patients, significantly altering post‑transplant the patient’s pre‑transplant personality). Circles of Fire: Variations begins with his costumed character lost in a mountainous, wooded landscape, then cast into the Gates of Hell. (This was filmed at an actual pit of eternal flame that burns in Turkmenistan in Central Asia.) From there, Douglas’ character is treated inside a stylised operating theatre by its surgeon hosts, where a symbolic transplant occurs—a viscous and visceral intervention—from which he is transported to the healing Osoysoos lake of British Colombia, in Canada. As with his work in the Body Fluid series, Douglas carefully researches and films in natural environments that are analogous to his inner‑scape as a patient to draw together the mind/body dualism.

Eugenie Lee’s work on the manifestation of chronic pain, directly investigates the ways in which psychological and emotional triggers can aggregate within the body and mind of a sufferer of Complex Regional Pain Syndrome (CPRS), so that the anxious anticipation of a painful encounter makes the subject more susceptible to feeling actual pain. Supported by numerous neuroscience research centres, including Body in Mind at the University of South Australia and NeuRA at the University of Sydney, Lee’s work Seeing is Believing (2016) uses the perceptual trickery of Virtual Reality to invert the treatment procedures used by neuroscientists to relieve the effects of chronic pain in sufferers by amplifying the potential for pain signals to reach the brain of a user.[3] Working with artist Andrew Burrell and a team of specialist engineers across computer science and acoustics, Lee’s performative installation incrementally limits the breadth of sensorial perception of participants, and seals them temporarily in a claustrophobic and acoustically anechoic space. Once inside and connected to an Oculus Rift and interactive glove, the VR program takes the participant through a scenario wherein their own hand appears to become swollen, and a potentially painful encounter is extrapolated.

Lee’s work distils her own experience of suffering from chronic pain into sensorial and metaphoric components through which she leads participants of the work in a one‑on‑one “consultation”. Social isolation becomes darkness and a closing‑off of the senses—the participant is shuttered into a space inside which no‑one else can hear them. While the VR is technically interactive, there is no way for those in its thrall it to alter its outcome, or to change the narrative, other than to indicate to the artist that they want it to stop. The title of Seeing is Believing encourages the idea that through participation and embodiment, people who encounter the work might be able to empathise with sufferers of chronic pain. It also serves as a reminder that sufferers of chronic pain are often disbelieved and distrusted by other people, as there is no visible site of injury to account for what they feel. In addition, there is to what Elaine Scarry describes as the “difficulty of expressing physical pain”.[4]

In work that is both in‑progress and ongoing, artist Vic McEwan has been working with young patients and their families at the Alder Hey Children’s Hospital in Liverpool, UK to determine the effects of sound on health and wellbeing. From his early research, McEwan uncovered a report from the World Health Organisation that recommended noise levels as low as 30 decibels for hospital wards and 35 in consultation areas to assist in healing and recovery. To initiate the collaboration, McEwan introduced patients to the technical application of decibel readers, which they used to record their own sonic environments. From the readings undertaken by young people and the artist himself, sounds of 83 and 85 decibels were recorded, eclipsing the noise McEwan recorded while travelling on a bus in peak hour traffic (which peaked at 78): “It’s causing people to heal more slowly. It’s causing people to feel more stress”.[5] 

Vic McEwan, Harmonic Oscillator, 2016, production still. Courtesy and © the artist

As a musician and composer, McEwan has been working with material gathered by himself and the patients he’s collaborated with, making compositions with the sounds that can be heard including heart monitors, air‑conditioners and televisions, as well as amplifying the sounds made by electronics and hospital machinery which are beyond the range of human hearing (but nevertheless absorbed by the human body). His work has also extended into collaborations with specific patients, to “break down the hierarchy” and normative behaviours of artists “working in community” to focus on the experience and creative potential individual patients.

As a result of this work, McEwan is in the process of producing a digital app for smart devices that can be downloaded in hospital by patients, staff and visitors, to assist in the relief of noise‑related anxiety in the hospital environment. His audit of the hospital acoustic ecology has also revealed some practical and relatively easy fixes to constant and repetitive noise problems. In this multi‑platform institutional research, with its multiple stand‑alone and ongoing projects, McEwan’s work points to the value of an interdisciplinary an open‑ended approach to engaging with art in the context of real life. The Harmonic Oscillator considers the multiple influences and impacts upon the patient mind and body including environment, expectation, personal history, illness and diagnosis as well as phenomena that cannot be seen or heard. 

Eugenie Lee, Seeing is Believing, 2016, multimedia participatory installation, VR still by Anrew Burrell. © Eugenie II Jin Lee/Licensed by Viscopy, 2017

If we think of medical patient experience as a relatively hidden one; institutionalised, segregated from daily life, and demonstrably under‑examined in our culture, then the mental health of the medical patient must be deemed almost invisible. In the works and works‑in‑progress of artists John A. Douglas, Eugenie Lee and Vic McEwan, through the embodiment‑as‑patient, the use of technology to stimulate somatic empathy, and sensitive collaboration with patient communities, this shadowy dimension of human existence is beginning to become illuminated. The interdisciplinary practices and collaborations of artists working across the divides of art and medicine, also forge links and discourse between different aspects of medical practice and scientific research, creating projects with potential for mutual reciprocity and extended engagement.


  1. ^ Jo Spence “The Artist and Illness: Cultural burn-out/holistic health!”, an interview with Jan Zita Grover in Cultural Sniping (1995), London: Routledge, 1995, p. 213–14. 
  2. ^ Body Fluid II (Redux) was commissioned by the Performance Space for the 2013 International Symposium of Electronic Arts (ISEA), Sydney
  3. ^ Lee’s work was developed in collaboration with Tarsha Stanton, Valeria Bellan and Lorimer Moseley from the University of South Australia; Stuart Esdaile from the University of Sydney; Roger Newport and Hayley Thair from the University of Nottingham; the McAulay Group from Neuroscience Research Australia and Andrew Burrell
  4. ^ Elaine Scarry, The Body in Pain: The Making and Unmaking of the World, London: Oxford University Press, 1985, p. 3
  5. ^ Clive Parkinson and Vic McEwan, The Harmonic Oscillator, keynote address for the 2017 Culture Health and Wellbeing International Conference, Bristol.

Bec Dean is currently a PhD candidate at UNSW Art and Design, and is working with the National Institute for Experimental Arts on The Big Anxiety. She is co‑director of Cementa, Kandos and formerly the co‑director of Performance Space, Sydney. She curated The Patient: The Medical Subject In Contemporary Art for the UNSW Galleries, Sydney, in 2016.