Interdisciplinary artist with a focus on medical science, persistent pain, and disability

Interdisciplinary artist with a focus on medical science, persistent pain, and disability

a woman wearing black shirt and pants leaning forward with her hands out-stretched towards the camera. She wears blue virtual reality goggles and large silver belt against a green curtained backdrop.

Participatory performance at The Empathy Clinic, UNSW galleries, The Big Anxiety Festival 2019

 Breakout My Pelvic Sorcery is a participatory art/science/tech project about pelvic pain created by interdisciplinary artist Eugenie Lee, tech collaborators, and pain science consultants. Currently, in its early development phase, it provides an artistic platform by inviting participants to immerse in a VR game whilst wearing a custom-built haptic belt with pelvic pain-like perceptions.

This collaborative project presents alternative storytelling about pelvic pain that merges multiple perspectives - the phenomenology of the lived experiences, current scientific research, and disability studies. It is about making the latest pain research accessible to the general public by converting similes and metaphors of pelvic pain descriptions, collected from a scientific survey, into a tangible experience whilst honouring the narratives of those living with pelvic pain.  

This project is an artistic expression that conceptually explores the implications of social interactions on one's well-being. The work invites participants to embrace a shared experience of discomfort by collectively engaging in a cooperative VR game experience, infused with care and compassion.

The gaming concept is brought into the creative arena as a socially safe space to encourage positive conversations about pelvic pain and disseminate valid information with care. It recalibrates the existing misinformation ("diseased vagina") and misperceptions about women living with pelvic pain ("promiscuous") by shifting perspectives and encouraging meaningful connections between people.

This performance with accompanying technologies lasts approximately ten minutes. Although the haptic belt encourages a discomforting experience for the participant, the performance offers a compassionate interaction between the performer (as a game master) and the participants (as players) with intimacy and openness.

This artwork has been mindfully created never to trivialise the experience of pelvic pain nor use technology for its own sake. It is an artistic expression that brings the voice of lived experience to the forefront as a shared experience and acknowledges participants' willingness to be vulnerable.

What does it mean when someone says, “it feels like my pelvis is crushing in on itself”? What would it be like to do everyday things whilst feeling like that? How would it affect the person if an observer says, "but you don't look sick". The artwork is not about simulating pelvic pain symptoms but highlighting the interrelationship between pain and social interactions. It focuses on shifting perspectives and creating an artistic platform that promotes access intimacy in two pronged approaches:
1. A playful yet emotive 3D gaming format that recontextualises the complex multi-dimensionality of pain and conveys the artist's advocacy as engaging as possible to participants.
2. It reconsiders an idea of a simulation exercise that invites people to step into the shoes of others. Often misused, this deeply problematic methodology can have the unfortunate effect of focusing participants on what it feels like to have certain pathological disorders, by highlighting their supposedly impaired ability to participate in society in the same way that able-bodies can. Instead, Eugenie refashions this methodology to draw out the humanity of the experience, and through the participatory process her work encourages self-reflection on the fundamental experiences of living social beings, it generates a legacy of inclusion and allyship that carries on well after the performance has ended.

The project invites participants to play a VR game, slightly awkward but seemingly easy game session which progressively becomes psychologically, physically and cognitively difficult to complete. 

The project is based on a game that does not require complex instructions. Participants only need to move around, hitting a bouncing ball off the 3D walls with their hands. At the same time, the haptic belt creates heat and pressure around the participant’s waist. Four electrodes attached to the participant’s lower abdomen and glutes, on a low-medium setting, are used to emulate common pelvic pain descriptions - like “cramping” and “twisting”. The simple virtual game will undergo more sophisticated aesthetic gaming narratives and accessibility during the later development stage. ​​​​​​​
Documentation for participants at The Big Anxiety Festival 2019, UNSW galleries, University of NSW Australia
Stills, Videographer Bianca Willoughby

Although this project evokes mild discomfort in the participating audiences, it does not inflict genuine pain but instead explores pain-related anticipation and anxiety to highlight the psycho-social aspect of pain. The participation is not passive but engages the entire body, emotions, senses, and cognition. It is inevitable that some will find the artwork confronting – whether it be psychological, physical, or just plain ‘nothing goes near my privates!’ (note: the artwork does not involve participants' privates.)

This work aims to challenge the social attitudes and stigma that silences people living with pelvic pain, unapologetically presenting an unpalatable topic through an interactive game format. The aim is for highly stigmatised pelvic pain issues to be visible without embarrassment or negativity. It is the wish of the artist and the collaborators that the participants’ experiences can be discussed with curiosity and positivity. Participants’ game scores will be tallied on a leaderboard as a tongue-in-cheek gesture, which will be visible in real-time on the screen as a part of an installation. With their permission, these will also be posted online through social media and a dedicated website with a public forum and the latest pelvic pain science.

Pelvic pain as a topic is deeply unpopular in our culture – the public has an aversion to discussing womxn’s (or multigendered) health issues – although pelvic pain does not discriminate against gender differences, many assume it is exclusively a women’s disease. Despite over 20% of Australians living with pelvic pain, public knowledge is obscured by misunderstanding and lack of research. 

Womxn living with pelvic pain, more so than any other form of persistent pain, live with an unspoken shame - feeling they have somehow brought their condition upon themselves, are flawed, weak, unworthy, and irrelevant. Observers often express, in various ways, their doubt about the existence of this invisible pain, and this can compound these feelings.

The goal of this project is to drive positive social change and offers the artist an opportunity to tell a story from the hearts of womxn living with pelvic pain and do the right thing by them.
 Project collaborators:

* Dr Susan Evans (Science consultant; pelvic pain specialist)
* Emeritus Prof Roland Sussex (Language and culture consultant; linguist at the University of Queensland)
* Dr Claire Ashton-James (Science consultant; social psychologist and empathy expert at the University of Sydney)
* Bec Dean (Producer)
* Peter de Jersey (Mechatronic engineer)
* Josh Harle (New media artist)​​​​​​​

Professor Roland Sussex, Ms Ellie Schofield and Dr Susan Evans have provided the artist with data from a scientific survey which they have recently conducted, entitled The Language of Pelvic Pain.

This research survey collated the personal pain experience of over 1000 Australian women, in their own words. Responses were anonymous, and their use of words and language is being analysed using modern computer software techniques. The researchers are investigating the words and expressions which women use when describing specific pain experiences, as an opportunity to bridge the communication gap between women with pain and their health professionals.

The similes and metaphorical expressions Breakout My Pelvic Sorcery is based on were selected from this.

Science consultants
Dr Susan Evans
Susan Evans is a Gynaecologist and Specialist Pain Medicine Physician in Adelaide. She is chair of the Pelvic Pain Foundation of Australia, member of the Advisory Board of the Robinson Research Institute, co-author of the Policy Document ‘The $6Billion Woman and the $600Million Girl: The Pelvic Pain Report’, co-developer of the Periods, Pain and Endometriosis Schools Program (PPEP-Talk), and has a long held interest in improving the quality of life of women and girls with pelvic pain. Susan has contributed widely to education on pelvic pain in Australia through medical journals, radio and television.

Emeritus Prof Roland Sussex
Roland Sussex is a Research Professor in the Institute for Teaching and Learning Innovation, and in the School of Languages and Cultures at the University of Queensland. His current research is on the triangle between language, culture and society, and technology. He is co-chief investigator in the Pain Lang Research Group at the University of Queensland, which is investigating the use of language in the diagnosis, treatment and management of pain. He was a Professor of Applied Language Studies at the University of Queensland, Linguistics and Russian at the University of Reading (UK), and the University of Melbourne in 1977-2010.

Dr Claire Ashton-James
Claire Ashton-James, PhD is a social psychologist and Senior Lecturer in Pain Management at The University of Sydney Faculty of Medicine and Health. Claire’s research focuses on the interpersonal realm of pain and healthcare. Her more recent research explores the social antecedents and consequences of pain, the impact of surgeons’ social attributes on patients’ experience of pain, the impact of clinician empathic communication on clinician and patient wellbeing.

Special thanks to Dr Bec Dean, Dr Josh Harle, Dr Natasha Andreadis, Mark Stone, Hayley Stone, Warwick de Jersey, Tom Iltcheff, Eugenie Ko, Colin Minter, Steve McKenzie, Jennifer Hunt, and Tahlia Hunt.  
This project has been assisted by the Australian Government through the Australia Council for the Arts, its arts funding and advisory body; and funded by Create NSW’s 360 Vision: Virtual Reality/Augmented Reality Development Initiative.

Published Reviews

Ellen Leabeater, Can A Pain Machine Create Empathy?, The Full Story, The Guardian Australia, 06 April 2021
Namila Benson and co-host Carly Findlay, What Does Access Look Like In The Arts?, ABC The Art Show, 02 December 2020
Keith Gallasch, The Big Anxiety #2: Breakout My Pelvic Sorcery, RealTime, 6 December 2019
Making of Breakout My Pelvic Sorcery
Everything we need to run the hacked TENS machine
Everything we need to run the hacked TENS machine
Inside the Arduino box encasing relay board & Arduino & raspberry pi
Inside the Arduino box encasing relay board & Arduino & raspberry pi
Peter with Relay boards and arduino for the preparation of selected pelvic pain effects
Peter with Relay boards and arduino for the preparation of selected pelvic pain effects
Inside of Raspberry pi with micro SD card
Inside of Raspberry pi with micro SD card
Mechatronic engineer Peter hacking TENS machine to experiment on some of the effects we are after, including 'electric zap', 'tearing' and 'piercing' sensation.

Selected works

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