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

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

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 emerging interdisciplinary artist Eugenie Lee, tech collaborators, and pain science consultants. Currently, in its early development phase, it provides an artistic platform for participants to grasp how difficult it is to perform simple activities whilst experiencing pelvic pain, inviting them to immerse in a visually engaging VR game whilst being stimulated by a custom-built haptic costume with pelvic pain-like sensations.

This collaborative project presents an alternative storytelling about pelvic pain illness that merges two different perspectives - lived experiences and current scientific research. It is about making the latest pain science accessible to the general public by converting similes and metaphors of pelvic pain descriptions, collected from a scientific survey, into a tangible experience for others who don't understand what pelvic pain can be like.  

This project adapts the classic arcade game ‘Breakout’ into a virtual reality challenge, with the twist that participants must play for ten minutes whilst experiencing pelvic pain-like stimulations felt through a custom-built haptic device worn around their pelvis. 

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? The artwork is not just about virtually simulating pelvic pain symptoms. It focuses on shifting perspectives and creating an artistic platform that demonstrates what it’s like to do simple thingswhilst experiencing some of these challenges. As a project which invites participants to experience a fun, 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 simulate common pelvic pain descriptions - like “cramping” and “hammering”. The simple virtual walls will undergo visually sophisticated visceral interior treatment to induce psychological apprehension and anxiety during the later development stage within the next few months. ​​​​​​​
Documentation for participants at The Big Anxiety Festival 2019, UNSW galleries, University of NSW Australia
Stills, Videographer Bianca Willoughby

The artwork does not involve real pain, but will be uncomfortable for some people. The participation is not passive but engages the entire body, its 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!’ 

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 shared 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 leader-board 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 women’s health issues – although pelvic pain does not discriminate 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. Breakout My Pelvic Sorcery is not just about creatively simulating pelvic pain symptoms for participants. It is an artistic expression that fuses experiential empathetic insight with a celebration of the resilience of those living with this devastating disease, despite its daily challenges and stigma.

Reporter & Producer of Full Story, The Guardian Australia,

Ellen Leabeater, at the artist's studio

"Can Pain Machine Create Empathy?"

Full Story Podcast, The Guardian Australia 2021

Produced by Ellen Leabeater

See 'Published Reviews' below for more information

 Project collaborators:

* Dr Susan Evans (Science consultant; pelvic pain specialist)
* Emeritus Prof Roland Sussex (Language and culture consultant; linguist at theUniversity 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)​​​​​​​
* Anthony Aitch (Costume designer)

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 healthprofessionals.

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 PainLang 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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