I am a Sydney based emerging interdisciplinary artist and a chronic pelvic pain patient.
Four years ago I participated in an art and science research residency with Prof Lorimer
Moseley and his super smart geeky team at Body In Mind at the University of South
Australia and McAuley Group at Neuroscience Research Australia (now called Centre for
Pain Research, Education and Management (PREM) at Neuroscience Research
Australia). This was the start of our collaboration on joint art and science projects, and
whilst this blog may be a little different from the ones you usually read on this forum, I
hope it will be of interest.
My artistic concept focuses on combining medical science with my pain experience. I
use paintings, sculptures, installations, performance and new media. I employ these
various media to explore artistic ways to humanise the latest neuroscience research in
chronic pain - by interlacing it with subjective patients’ narratives, including my own,
each work stands on a solid base of objective knowledge, coupled with subjective
experiences, and tells a story from both perspectives.
For the last 2 decades I’ve been living with endometriosis and adenomyosis. The pain
eventually became more than a mere symptom and needed to be acknowledged as a
beast of its own. One of my most desperate wishes during this difficult time was for
other people to understand what I was experiencing. I felt that verbal language was so
inadequate to get my experience across to them, because their understanding of what
pain is (and should be), and my actual experience of pain just didn’t match up. Some of
these interactions hugely affected how I experience my pain from day to day. The not
knowing (because pain is unsharable), and not seeing (because pain is invisible), made
it easy for others to dismiss my pain as not serious or even real. People in long-term
pain often live in silent isolation rather than continually face this lack of understanding
from others and the inadequate validation modes available for people with chronic pain.
Telling the Story of Pain through Art
As a result, I began creating artworks to address these issues, like this one from a series
entitled "McGill Pain Questionnaire" where I represented visually the many qualities of
pain that the questionnaire tries to capture.
The idea of separating body and mind still exists strongly in our culture. Descartes’
metaphysical investigations over 400 years ago established this notion of dualism, and
the mechanisms have been soundly disproved in modern science. Nonetheless this
outdated theory has been both influential and persistent and can be very disturbing,
confusing, and even traumatic to a lot of people living with persistent pain. Separating
mind and body feels at odds with the experience of living with pain, yet they continue to
encounter this lingering medical, cultural, and social belief. I use my art to try and find
alternative ways to attack this musty old viewpoint. How do I do this? By incorporating
the latest medical knowledge into my works - highlighting how far the scientific studies
have progressed since the Descartes’ era - together with subjective patients’ lived
experiences, so that I can humanise the objective knowledge of medical science into
narrative works of art.
Residency at BiM and PREM
Which now leads to my residency with clinical neuroscientists, at Body In Mind and PREM nearly three years ago. What I learned during this residency completely changed my art practice and it helped me to manage my own pain so much better because my viewpoint towards my own pain experience has drastically shifted since then. These generous and enthusiastic scientist geeks have not only validated my experience as a person living with pain, they have taught me to see my pain in different ways, and these are some of the key points they advocate time and time again that has influenced my art making ever since:
In other words, each patient’s own meaning of pain has a huge influence on the sensations and unpleasantness of their pain.
There are 3 important beliefs that the pain scientists and I share in our research that have bound us together from the very beginning:
During this residency, I was invited to participate in various scientific experiments and studies. One of the most striking and creative methodologies some of the researchers employ there was how they implement the latest technologies, like Virtual Reality and Mediated Reality to name a few, to study how the brain makes sense of the body and our sensory perceptions.
What I couldn’t understand then was why their amazing findings and knowledge had never really reached those who desperately needed to hear the most, namely pain patients. I felt that everything I’d learned there was too good to keep it to myself, so I have begun to look for ways to share with as many people as possible in my artworks.
Making Pain Personal
An idea started to emerge in my head. The researchers at Body in Mind and
NeuRA are tirelessly searching for ways to treat or provide pain relief for pain patients, some of them are using the latest technologies. What I thought of was to flip their studies around, and make an artwork that provides a perception of pain to people who don’t experience chronic pain, by using their technology. Our plan was that by doing so, our collaborative project would bridge a gap between the person feeling the pain and the person observing it. So the observer, or participant, gets to have an experience as close as possible to that of chronic pain.
Why did I want to do this? Because without going through a similar experience, it’s very
difficult for observers to understand and empathise with what it’s like to have chronic
pain – it had to become personal. I also wanted to design the work without actually
giving the observers physical torture – although the thought had entertained my mind a
few times - demonstrating the point that the brain can still produce perceptions of pain
even in the absence of physical injury. So we are trying to debunk Cartesian Dualism
here, in a truly experiential way. Importantly, I wanted to create a work that also
provokes the emotional and psychological strains of chronic pain - such as anxiety,
anticipation, isolation, and stress. The work had to encompass the bio-psycho-social
components as one inseparable experience. Because that’s what pain is, and that’s
exactly what a lot of people don’t seem to understand.
The end result of our two and a half years of collaboration is an interactive performance installation called, Seeing Is Believing. The researchers who have been working directly with me in this are a couple of young superstars in the pain world, Dr Tasha Stanton and Dr Valeria Bellan from Body In Mind.
Seeing is Believing is an experimental art and science project that conveys the illusion of chronic pain using the latest technology. The installation is an intimate one-on-one interaction between an audience and myself, and gives each participant a metaphorical experience of what it’s like to live with persistent pain, and explores how our brains construct and experience pain. In this artwork, I specifically focus on Complex Regional Pain Syndrome (CRPS) to demonstrate the complexities of pain in their right hand.
For the first stage, an audience firstly experiences a mediated reality machine, MIRAGE – originally developed by Dr Roger Newman at the University of Nottingham, generously lent by BIM – which distorts the hands of the audience on a screen in a manner that is incongruent to what the actual hands are doing.
This primes them for the next stage – I would call it the ‘fun’ stage, but others might
disagree. The audience is led into the silence of a small padded anechoic chamber. The
willing victim, sorry, I mean a participant, is then fitted with VR goggles and their right
hand is placed inside two gloves as an enveloping sound-score surges from speakers
embedded in the walls. This allows for a deep immersion into both an aural and visual
simulation of CRPS.
Since completion, this artwork has shown throughout Australia as a part of a large touring exhibition called, The Patient (curator: Bec Dean). The abridged version of this project was presented at the Australian Pain Society conference in Adelaide last year.
Here is a short video of an abridged version - it’s a clip from a local news program. The news summarises our project so succinctly in the shortest time, it’ll be a lot easier to further explain the artwork after this.
From what you saw in the news reporter’s reaction, aaarrrgh!!, the mechanical stimulations from the gloves are not that bad at all, but some people, just like the reporter, respond to the work far worse than others.
Success in sharing the pain experience
This experiential installation works to engage the audience’s brain in a multisensory stimulation, along with their own personal associations like their past experiences, childhood memories etc. The combined information then becomes unique to that individual with the perception of danger – whether it’s real or abstract, their brains often don’t differentiate and thus their brain concludes it needs protecting. The result can be a very discomforting experience.
A key achievement of Seeing is Believing is transforming the research behind the project
into a tangible and emotional experience for audiences. To date hundreds of audience
members have experienced the work and the response has been powerful and
overwhelming. The experience has effectively helped them feel a strong sense of
empathy and connection with the experience of chronic pain. Participants have ranged
in age from 8-78 years, and the participatory nature of the work makes it accessible to
people from different cultural, social, gender, and demographic backgrounds – it cuts
across boundaries in the same way that chronic pain itself does.
Art builds empathy for people living with pain
The main objective for this project is for the general public to experience just a little bit
of what it feels like to live with Complex Regional Pain Syndrome and chronic pain in
general and to remember their experience long after the session is finished. One of the
commonest responses has been along the lines of “is this what it really feels like?” while
they stare at their hand. Responses from people with a friend or a relative with
persistent pain, and maybe more surprisingly many clinicians, have been particularly
strong. A lot have also expressed some guilt for not having completely appreciated what
their friend, or relative, has been going through. It aims to provide a transformative
experience that will actually change the individual’s actions and attitudes towards
people with chronic pain. In doing so, the project addresses important bio-ethical issues
including the stigma surrounding people with chronic pain and the lack of
understanding from society.
Through art, we were able to experiment with generating alternative understandings and meanings for the complexities of pain.
+Note: My residency was generously supported by Synapse art and science research residency 2015 (Australian Network for Art and Technology); devolved funding administered by Accessible Arts (AARTS) on behalf of the Lifetime Care and Support Authority (LTCSA); and Arts NSW and Aging, Disability and Home Care’s Amplify Your Art Program, a devolved funding program administered by Accessible Arts on behalf of the NSW Government.
+Seeing Is Believing was developed through a Synapse Art & Science residency and premiered in 2016 in the group exhibition ‘The Patient’ (curator: Bec Dean). The installation is a one-on-one interaction between the artist and a participant conveying a multisensory experience of chronic pain by using VR, Augmented Reality and custom designed gloves.
+ Seeing Is Believing will be exhibited this year at Museum Of Discovery (MOD.) at the University Of South Australia (June-July) and Beijing Media Art Biennale, Beijing, China (September-October).
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