Biomedical Art and Curatorial Care

Home , Bob Flanagan (author), Marc Quinn, Stelarc

The Patient: Biomedical Art and Curatorial Care

Rebecca Dean, BFA (Hons)

Submitted in part fulfilment of the requirements for the degree of

Doctor of Philosophy

School of Art and Design

August, 2018 Thesis/Dissertation Sheet

Surname/Family Name : Dean Given Name/s : Rebecca Louise Abbreviation for degree as give in the University calendar : PhD Faculty : Art & Design UNSW School : Art & Design UNSW Thesis Title : The Patient: Biomedical Art and Curatorial Care

Abstract 350 words maximum: (PLEASE TYPE) In this Curatorial Practice-Based Research (CPBR) project, I argue that Biomedical Art calls for a very particular expansion of the idea of curatorial care, to encompass care for artists and their collaborators as human subjects, lively materials, audiences, archives and legacies. I undertake this through the experimental curating and reflective analysis of the large-scale touring exhibition The Patient: The Medical Subject in Contemporary Art.

The thesis identifies an emerging field of practice in Biomedical Art, which focuses on the medical patient experience of biomedicine, and crosses scientific, therapeutic and social contexts. An exhibition engaging with living with illness, adapting to bodily change and contending with death, the artists included in The Patient undertake multiple roles; as patients, subjects, objectified bodies, living biological material, researchers, collaborators, and themselves, carers. I detail my creation of an interdisciplinary exhibition environment, where facets of the museum, the laboratory and the clinic coalesce to support these diverse perspectives, experiences and needs.

My research project, which is undertaken primarily through a long-term engagement with, and commissioning of contemporary practitioners, is articulated as embodied and attentive curatorial methodology in which I mobilise ‘care’ longitudinally, situationally, materially, conceptually, receptively and emotionally. Through reflective curatorial practice I argue that these forms of care for artists, lively materials and exhibition visitors productively support the complexities and challenges of Biomedical Art represented in The Patient.

I offer two main contributions to knowledge through this research: the articulation of Biomedical Art as an emerging contemporary practice; and a new way of understanding curatorial care as an imperative expansion from the caretaking of objects, to care for the living. I present curatorial care for Biomedical Art as intersecting with, and contingent upon, the structures and networks of institutional and community care of which we are all part.

Declaration relating to disposition of project thesis/dissertation

I hereby grant to the University of New South Wales or its agents the right to archive and to make available my thesis or dissertation in whole or in part in the University libraries in all forms of media, now or here after known, subject to the provisions of the Copyright Act 1968. I retain all property rights, such as patent rights. I also retain the right to use in future works (such as articles or books) all or part of this thesis or dissertation.

I also authorise University Microfilms to use the 350 word abstract of my thesis in Dissertation Abstracts International (this is applicable to doctoral theses only).

………………………………………………………… ……….…………31.8.2017…………...…….… Signature Witness Signature Date The University recognises that there may be exceptional circumstances requiring restrictions on copying or conditions on use. Requests for restriction for a period of up to 2 years must be made in writing. Requests for a longer period of restriction may be considered in exceptional circumstances and require the approval of the Dean of Graduate Research.

FOR OFFICE USE ONLY Date of completion of requirements for Award: INCLUSION OF PUBLICATIONS STATEMENT

UNSW is supportive of candidates publishing their research results during their candidature as detailed in the UNSW Thesis Examination Procedure.

Publications can be used in their thesis in lieu of a Chapter if: • The student contributed greater than 50% of the content in the publication and is the “primary author”, ie. the student was responsible primarily for the planning, execution and preparation of the work for publication • The student has approval to include the publication in their thesis in lieu of a Chapter from their supervisor and Postgraduate Coordinator. • The publication is not subject to any obligations or contractual agreements with a third party that would constrain its inclusion in the thesis

Please indicate whether this thesis contains published material or not. This thesis contains no publications, either published or submitted for publication ☐ (if this box is checked, you may delete all the material on page 2) Some of the work described in this thesis has been published and it has been documented in the relevant Chapters with acknowledgement (if this box is ☒ checked, you may delete all the material on page 2)

This thesis has publications (either published or submitted for publication) ☐ incorporated into it in lieu of a chapter and the details are presented below

CANDIDATE’S DECLARATION I declare that: • I have complied with the Thesis Examination Procedure • where I have used a publication in lieu of a Chapter, the listed publication(s) below meet(s) the requirements to be included in the thesis. Name Signature Date (dd/mm/yy) Rebecca Dean 31.8.18

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i COPYRIGHT STATEMENT

'I hereby grant the University of New South Wales or its agents the right to archive and to make available my thesis or dissertation in whole or part in the University libraries in all forms of media, now or here after known, subject to the provisions of the Copyright Act 1968. I retain all proprietary rights, such as patent rights. I also retain the right to use in future works (such as articles or books) all or part of this thesis or dissertation. I also authorise University Microfilms to use the 350 word abstract of my thesis in DissertationAbstract International (this is applicable to doctoral theses only). I have either used no substantial portions of copyright material in my thesis or I have obtained permission to use copyright material; where permission has not been granted I have applied/will apply for a partial restriction of the digital copy of my thesis or dissertation.'

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‘I hereby declare that this submission is my own work and to the best of my knowledge it contains no material previously published or written by another person, or substantial proportions of material which have been accepted for the award of any other degree or diploma at UNSW or any other educational institution, except where due acknowledgement is made in the thesis. Any contribution made to the research by others, with whom I have worked at UNSW or elsewhere, is explicitly acknowledged in the thesis. I also declare that the intellectual content of this thesis is the product of my own work, except to the extent that assistance from others in the project’s design or conception or in style, presentation and linguistic expression is acknowledged.’

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Date 18.3.19

i Abstract

In this Curatorial Practice-Based Research (CPBR) project, I argue that Biomedical Art calls for a very particular expansion of the idea of curatorial care, to encompass care for artists and their collaborators as human subjects, lively materials, audiences, archives and legacies. I undertake this through the experimental curating and reflective analysis of the large-scale touring exhibition The Patient: The Medical Subject in Contemporary Art.

ii Acknowledgements

Thanks firstly to my supervisor, Lizzie Muller, for her encouragement and attention towards my work during my candidature.

To all of the artists I have worked with over this period towards the exhibition, I really could not have done it without you: John A. Douglas, Helen Pynor, Guy Ben-Ary and collaborators, Andrew Fitch, Nathan Thompson, Darren Moore, Douglas Bakkum, Mike Edel and Stuart Hodgetts, Eugenie Lee, Andrew Burrell, Sheree Rose, ORLAN, Ingrid Bachmann, John Wynne and Tim Wainwright, and exhibition designer Shahmen Suku. And the artists and specialists who presented their work in public programs: Fiona McGregor, Aaron Sinclair, Deborah Kelly, Victoria Spence, Claire Edwardes, Jason Noble, Chris Abrahams, Jon Rose, Clayton Thomas, Dr. Susan Evans, Dr. Roland Sussex, Dr. Kumud Dhital, Joshua Cohen and Max Mohr. And to contributors to the exhibition catalogue: Dr. David Cross, Dr. Brian Lobel, and Dr. Kirsten Hudson and designer, Fiona Hudson.

To those from whom I borrowed or reproduced objects and works: John Webber, Paul Andrew and ACMI, Linda Sly and the Heide Museum, Terry Dennett and the Richard Saltoun Gallery, Sally Gray, Museum of Applied Arts and Sciences, ONE Gay and Lesbian Archive, Performance Space, and the Australian Centre for Photography.

In memory of the artists in The Patient who have passed: Bob Flanagan, David McDiarmid, Brenton Heath-Kerr, Carol Jerrems and Jo Spence.

Thanks to everyone involved in the presentation of the exhibition, The Patient at UNSW Galleries: Felicity Fenner, Lucy Ainsworth, Dara Gill, Susan Thompson and Natalie Dean. And to the Masters of Curating and Cultural Leadership students who presented public programs for this program. For The Patient at the Manning Regional Gallery: Rachel Piercy and Jane Hosking. For The Patient at the Riddoch Gallery: Melentie Pandilovski and Serena Wong.

iii To my family for their unwavering support over this time: Angela Dean, Emma Dean and Joon Yang, Jane Dean, Philip Dean, Imogen Brown, Jamie Brown, Louise Manner, Gordon Callaughan, and Lily and Lola Callaughan.

Thanks to friends that have housed me on various “writing retreats”: Sue Goldfish and Deborah Kelly, Emma Dean and Joon Yang (and Sonny the cat), and Malcolm Riddoch and Jo Burzynska (and cats Varla and Argenta).

To my fellow PhD jail-mates, who shared a room and a work ethic with me at UNSW Art and Design: Vanessa Bartlett, Pia Van Gelder, Heather Contant, Abigail Moncrief, Emma Crott, Annie Murney and Meredith Birrell. Thanks for the treats and the sarcasm.

Many thanks to Malcolm Riddoch for his editorial expertise, and to Lucas Ihlein and Lindsay Kelly for reading and commenting on my thesis.

Above all, my thanks and love to my partner, Richard Manner who has been cruelly deprived of bushwalks, camping, holidays, and many of the other things that we enjoy doing together for the past four years. Thank you for being my technician, co-driver, trouble-shooter and head installer for the touring exhibitions. Thank you for taking care of Drazic, Otak, Ubik and Solly.

This thesis is dedicated to the unknown patient.

iv Table of Contents

Abstract ii Acknowledgements iii List of Figures vii

Preface: The Spring x

1. Introduction 1 1.1 Research Questions 2 1.2 Research Methodology 5 1.3 Chapter Summary 16 1.4 Outcomes and Contributions to Knowledge 21

2. Situating Biomedical Art 25 2.1 Bioart and SymbioticA 29 2.2 Artists-as-Patients 38 2.3 Exhibitions, Galleries and Museums 55 2.4 Biomedical Art as an Emerging Field 59

3. Care and the Artist 62 3.1 The Medical Gaze and the Power Differential 63 3.2 Resistance, the Ill Artist and the Estate 69 3.3 Communities of Care and the Distributed Archive 75 3.4 The Artist as Carer and the Life of the Archive 84 3.5 Case Study 1: John A. Douglas 91 3.6 Caring and the Artist-as-Patient 102

4. Care and Lively Materials 105 4.1 Lively Materials and Biomedical Art 107 4.2 The Artist as Carer for Lively Materials 114 4.3 Case Study 2: Helen Pynor 118 4.4 Case Study 3: Guy Ben-Ary 130

v 4.5 Looking After the Living 138

5. Care and the Visitor 141 5.1 Conceptualising the Visitor 143 5.2 The Visitor and the Medical Gaze in The Patient 150 5.3 Museum, Laboratory and Clinic 158 5.4 Patient Knowledge and Public Programs 168 5.5 Case Study 4: Eugenie Lee 173 5.6 A Supportive Exhibition Environment 186

6. Conclusions, Findings and Contributions 191

Bibliography 205

Appendices 215 Appendix A The Patient catalogue (PDF layout version) Appendix B The Patient brochure, UNSW Galleries Appendix C The Patient Forum information Appendix D. The Patient Objects, UNSW Galleries and touring versions Appendix E Example of exhibition label Appendix F Eugenie Lee Seeing is Believing participant information Appendix G HREA Ethics Clearance Appendix H Example of recruitment email for semi-structured interview Appendix I Example of research questions for semi-structured interview

vi List of Figures

Figure 1 Diagram of Bio-Art copied from George Gessert, from an original diagram by Pier Luigi Capucci, 2007.

Figure 2 Tim Wainwright and John Wynne: Transplant, 2007. Photo: Tim Wainwright.

Figure 3 Peta Clancy and Helen Pynor: The Body is a Big Place, performance documentation, Performance Space, 2011. Photo: Peta Clancy.

Figure 4 Carol Jerrems, Hobart Hospital Series (1979), The Patient installation image, UNSW Galleries, 2016. Photo: Silversalt Photography.

Figure 5 David McDiarmid, nine works from Rainbow Aphorisms, 1994, The Patient installation image, UNSW Galleries, 2016. Photo: Silversalt Photography.

Figure 6 Brenton Heath-Kerr, various works, The Patient installation image, UNSW Galleries, 2016. Photo: Silversalt Photograpy.

Figure 7 Bob Flanagan and Sheree Rose, Wall of Pain, 1982, The Patient installation image, UNSW Galleries, 2016. Photo: Silversalt Photography.

Figure 8 Bob Flanagan and Sheree Rose, installation of images and objects in The Patient at UNSW Galleries, 2016. Photo: Silversalt Photography.

Figure 9 John A. Douglas, Body Fluid II (redux) 2011, Performance Space. Photo: Garth Knight.

Figure 10 John A. Douglas, Circles of Fire – Variations, 2016, installation at UNSW Galleries, 2016. Photo: Silversalt Photography.

Figure 11 John A. Douglas, Circles of Fire – Variations, video still, 2017.

Figure 12 John A. Douglas, Circles of Fire – Variations, video still, 2017.

Figure 13 Helen Pynor, The End is a Distant Memory, microscopy detail, 2016.

Figure 14 Helen Pynor, The End is a Distant Memory, 2016. The Patient installation image, UNSW Galleries, 2016. Photo: Silversalt Photography.

Figure 15 Helen Pynor, The End is a Distant Memory, video still, 2016.

vii Figure 16 Guy Ben-Ary and collaborators, cellF, performance documentation at the Cell Block Theatre, 2016. Photo: Rafaela Pandolfini.

Figure 17 Guy Ben-Ary, cellF documentation, 2015.

Figure 18 Guy Ben-Ary and collaborators, cellF documentation, 2015. The Patient installation image, UNSW Galleries, 2016. Photo: Silversalt Photography.

Figure 19 Bec Dean, The Patient Venn Diagram 1, 2016.

Figure 20 Bec Dean, The Patient Venn Diagram 2, 2016.

Figure 21 UNSW installation of The Patient, 2016. Photo: Silversalt Photography.

Figure 22 Manning Regional Gallery installation of The Patient. Photo: Manning Regional Gallery.

Figure 23 UNSW installation of The Patient, 2016. Photo by Silversalt Photography.

Figure 24 Manning Regional Gallery installation of The Patient. Photo: Manning Regional Gallery.

Figure 25 UNSW installation of The Patient Objects, 2016. Photo: Silversalt Photography.

Figure 26 Manning Gallery installation of The Patient Objects, 2017. Photo: Manning Regional Gallery.

Figure 27 Sheree Rose, Fiona McGregor and Aaron Sinclair, Resurrection Redux, 2016, performance at UNSW Galleries. Photo: John A. Douglas.

Figure 28 Eugenie Lee, Seeing is Believing, 2016, virtual reality view. Image: Andrew Burrell.

Figure 29 Eugenie Lee, Seeing is Believing, 2016. The Patient installation at UNSW Galleries. Photo: Silversalt Photography.

Figure 30 Eugenie Lee, Seeing is Believing, 2016. The Patient installation at UNSW Galleries, 2016. Photo: Silversalt Photography.

Figure 31 Eugenie Lee, Seeing is Believing, 2016. Manning Regional Gallery installation. Photo: Manning Regional Gallery.

viii Preface

The Spring

I cast my thoughts back to a small, metal object. It is a bedspring, close to two inches long. It is rusty, russet red in colour and exudes the iron tang of oxidization.

This object shares its size, shape and materiality with a collection of bedsprings held under a single catalogue number at the Gordon Museum of Pathology, Guys Hospital at the Kings College in London. The springs are generic in appearance, and as the catalogue number has no date assigned to it. It is impossible to know what age they are, or for how long they have been held in the collection.

The Gordon Museum is not open to the public. It is a museum of pathology and forensic science that exists to aid medical students in their identification and diagnosis of disease in living, human subjects. The museum has existed on the site for two hundred years, and its earliest acquisition dates from 1608. The thousands of human organs and body parts that comprise its collection are arranged in four interconnected mezzanine spaces, two storeys high, arranged around a central spiral staircase like a stone spine. The collection is arranged mainly according to disease type: Diseases of the Bone; Diseases of the Liver; Diseases of the Pulmonary System, with one upper floor dedicated to specimens related to homicide and infanticide.

The collection of bedsprings can be found in the Stomach section of the museum. It is one of the few items in the collection that does not originate from the human body, or any body. Its obscurity and difference in this way made it totally compelling to me. The springs on display were supported by a clear plastic vessel that was shaped like a stomach. I counted nine springs complete with nine longer lengths of metal wire that once attached the springs to a bedframe. A single spring was also displayed outside the stomach vessel.

ix I opened the reference catalogue and looked-up the number. And in the catalogue entry there was a photograph of a naked, tattooed man, with evidence of surgery in the form of hospital gauze stuck to his abdomen. Photography is not allowed in the Gordon Museum, and I felt a bit awkward even taking notes. So I just looked. And this is what I remember.

The man was a guest of Her Majesty’s prison system. His crimes were not stated as part of this catalogue entry and nor was the date or the period of his internment. The documentation of his naked body was however unique in terms of the protocols observed throughout the rest of the cataloguing system which clearly separated the preserved organs on display from images of their hosts. The body part always remained separate from identity. There were no other images that I saw of the people to whom organs once belonged. But then, the springs were foreign to this man’s body in the first place, and the only evidence of his existence in relation to the springs was the photograph.

The prisoner had ingested the springs orally over a period of time and had also inserted several into his rectum. He was sent to hospital to have them removed. When asked why he had done this, he answered with a nonchalance familiar to British working-class wit, “To get out a while.” The patient, it was noted, made a full recovery.

While clinical in nature, the photograph was incredibly detailed and revealed a number of tattoos on the prisoner’s skin. The photographer had taken the image of the man from the neck down, thus obfuscating his identity, and serving him up as an object of particular interest to study. The nature of his tattoos seemed to echo the sense of resistance and refusal of the powers of the system inherent in his act of swallowing the bedsprings. Among them were the words “Fuck” and “Off” neatly inscribed on his right and left knees respectively, as if his every movement made a challenge to authority and the world around him. I could only imagine the pain he endured in order “To get out a while” and the brutality of the environment that may have compelled his actions.

I had visited the Gordon Museum on the advice and arrangement of my friend and case-study artist, Helen Pynor. We met after my visit and she asked me what I thought of the collection. She asked me what specimen intrigued me the most. And we spoke almost in unison.

“The Springs!”

x Independently and amid thousands of human specimens we had both been profoundly moved by the rusty collection of metal springs.

Together we decided that evening that The Patient would be dedicated to this unknown patient.

I tell this story to preface my thesis, as it introduces a number of ideas and questions that are part of my curatorial research into artists working in an area I am calling Biomedical Art. In this story we encounter issues of ethics in the representation of patient material, the foregrounding of the patient body, the patient as object, lively materials, the agency of the patient subject, duration and pain, and institutional control. This Curatorial Practice-Based Research project focuses on curating the profound collaborations between artists and scientists and the work of artists-as-patients.

The word patient, Helen told me, has its etymology in the Latin patientem meaning, “to wait, with pain”, or “enduring, without complaint.”

We will all be patient.

xi 1. Introduction

This curatorial practice-based research project addresses Biomedical Art as an emerging field in interdisciplinary art practice and its curatorial implications, through my curation of the exhibition, The Patient: The Medical Subject in Contemporary Art (2016 - 2018). A project engaging with living with illness, adapting to bodily change and contending with death, The

Patient considers our relationship to health and medicine from the medical patient’s perspective. At a critical point of social and political discourse on burgeoning health crises and the challenges of supporting an increasingly ageing population, the project turns attention towards the creation of a lively, supportive context for the public contemplation of difficult aesthetic material engaging with art and health. This research project proposes that complex, interdisciplinary art, taking place at the intersection of science and the extremes of lived experience, requires a curatorial methodology that can answer its challenges, its innovations, and its entanglements with audiences.

My research unfolds across exhibition outcomes, public programs, a catalogue (see

Appendices), and this exegesis. The exhibition, The Patient: The Medical Subject in

Contemporary Art, was presented as a major exhibition of international and Australian art, with a significant public program of talks, conversations and workshops, a performance program and catalogue, premiering at UNSW Galleries from June - August 2016. Since that time, I have self-managed, transported, and installed the exhibition to two regional venues:

Manning Regional Gallery in Taree, New South Wales (2017), and The Riddoch Gallery in

Mount Gambier, South Australia (2018). The Patient was supported through cultural grants, philanthropy, and fundraising.

1 The exhibition included the work of twelve artists and groups. I commissioned three projects for the exhibition by artists John A. Douglas, Eugenie Lee and Helen Pynor. A major project by Guy Ben-Ary and collaborators, had its NSW performance premiere during the exhibition.

In this thesis, I engage with these four Australian projects as case study examples of

Biomedical Art in Chapters Three, Four and Five. The Patient included contemporary works by Ingrid Bachmann, ORLAN, and Tim Wainwright and John Wynne which situated these new works within current international practice engaging with the medical patient subject.

Four historical bodies of work by Bob Flanagan and Sheree Rose, Brenton Heath-Kerr, Carol

Jerrems, David McDiarmid and Jo Spence were also included in the exhibition and provide a longer perspective and different artistic lineages for contemporary art by artists-as-patients.

In this thesis, I present my curating methodology as an embodied, longitudinal form of attentiveness that stretches across historical research, disciplinary boundaries, and human and non-human interactions. Principally, I seek to present my work as expanding the foundational principles of ‘care’ for objects and collections that has defined traditional curating practice, to include care for the live, the lively, and the living, and encompassing the life-cycles of works of art.

1.1 Research Questions

My research has been stimulated by previous outcomes of my professional work as a curator, engaging with living artists, commissioning new works, and observing changes and specialisations emerging within the expanding field of interdisciplinary and transdisciplinary art. Between 2010 and 2013, I worked on two major projects by artists John A. Douglas, and

Peta Clancy and Helen Pynor. Both were installations with performance elements, they

2 incorporated functional medical or laboratory apparatus within the aesthetics of their environments, and both addressed the subject of human organ transplantation from the medical patient perspective. Around the same time, I was approached by artist Guy Ben-Ary, with whom I had previously worked, about an interactive work he was developing that utilised stem-cells harvested from his own body. With each of these projects, the idea of the patient subject examining the biological materialities and/or pathologies of their own experience was made palpable. Alongside my own practice and engagement with living artists, I was also aware of arts and health, and arts for health and wellbeing, gaining prominence in political and cultural discourse. The confluence of these manifestations seemed to suggest a potent area for curatorial research. Therefore, my first research question, driving forward the rest of my endeavours is:

What are the characteristics and qualities of Biomedical Art? - Its histories and lineages? - Its social and cultural manifestations? - Its aesthetics? - Its modes of production? - Its creative contexts?

This first question establishes the foundation for the rest of my research. It contextualises my experiences of recent, interdisciplinary artistic practice within a critical frame. The term

Biomedical Art is highly suggestive of Bioart, because the artists I am engaging with undertake some of their research in laboratory contexts, and with lively subjects and materials. However, they also mobilise social, participatory and performative forms of practice. To reflect this, my research covers historical artworks including documentary and

3 feminist photography, body-based performance practices of the 90s, live art, socially engaged practice, and a range of work made by artists and activists during the epidemics of HIV and

AIDS. Chapter 2 addresses the various lineages and discourses contributing to my articulation of Biomedical Art, firstly through an account of Bioart practice and the work of particular artists and thinkers, and secondly through a contemporary historical account of the artist-as-patient. The characteristics and qualities of Biomedical Art unfold throughout

Chapters 3 to 5, in relation to my curatorial research and practice in developing The Patient exhibition and tour.

My second research question engages with curatorial care in relation to Biomedical Art:

How does curating Biomedical Art and art work engaging with the artist-as-patient and the medical patient subject, expand the concept and practice of care in curating?

This question directly addresses the practice of curating and its etymological origin in ‘care’ and as “curators” as carers for things of importance to knowledge.1 Through The Patient I consider care in curating through the framework and research methodologies of an exhibition project that deliberately invokes and involves other institutionalised forms of care, including museums, the hospital and the research laboratory. My consideration of this question contributes to curatorial practice-based research by addressing the expansion of curatorial and museological care from its foundational, object-oriented models, to a methodology that is

1 S. Nowotny, ‘The Curator Crosses the River: A Fabulation’, in Martinon, J.P. (ed.), The Curatorial: A Philosophy of Curating, London, Bloomsbury, 2013, p. 61.

4 symbiotic to the needs, uses and impacts/effects of living artists, audiences and materially lively Biomedical Art.

1.2 Research Methodology

Curatorial Practice-Based Research

This Curatorial Practice-Based Research (CPBR) project is enacted through the many practical and conceptual vectors of curatorial labour. It has tangible, public outcomes in the form of a touring exhibition, discursive programs for public engagement, a catalogue and documentation in various forms of media. It contributes to knowledge in contemporary curatorial practice, acquired from my specific processes and skills in developing and manifesting these public outcomes, and my reflection upon them. In engaging with research into a specific, interdisciplinary area of artistic practice that I am calling Biomedical Art, the research encompasses historical and analytical fields of knowledge in contemporary art including interdisciplinary curating, new museology, body-based art, performance art, participatory art and Bioart, addressed throughout the chapters.

CPBR is a growing academic area of research, with many tertiary institutions offering programs specifically developed around curatorial research, and the production of knowledge through curating exhibitions, events, performances and other kinds of creative projects.2 The field of curating is expanding and highly contingent, meaning that the knowledge it produces, and how it produces it, is entirely dependent upon the kind of project—its artists, artworks, objects, collections, programs, performances—being curated, and where and for whom it is presented. Recently, discourse on curating has turned towards an analysis of CPBR and its

2 In Australia, Australian National University (ANU), University of New South Wales (UNSW), University of Melbourne, University of Sydney and the University of Western Australia (UWA) all offer postgraduate courses in curatorial studies.

5 pedagogies. The latest anthology on curating by Paul O’Neill, Mick Wilson and Lucy Steeds,

The Curatorial Conundrum: What to Study? What to Research? What to Practice? (2016) looks at the various conundrums produced by CPBR over the past two decades, from a number of perspectives including the idea of curatorial “‘knowing’ as embedded in the life- world rather than isolated in narrow institutional enclaves.”3 Jean-Paul Martinon’s anthology,

The Curatorial: A Philosophy of Curating (2013), draws distinctions between approaches to curating and how we understand “the curatorial”.4 Martinon’s own writing on experiencing the curatorial as an “event” and as “embodied knowledge” aligns with my own emphasis on the material and physical realities of curatorial labour which I present later in this introduction.

I come to this research project via a curating practice that spans two decades. Across this time, I have aggregated skills and knowledge of the conceptual and practical concerns of curating and exhibition-making in the process of making them. My curating practice has engaged with multiple artistic disciplines including performance and live art, transdisciplinary and new media art, and with installations and events taking place outside the confines of the modernist ‘white cube’. As such, my previous work has been informed by curatorial practice-based research in a similar range of areas including community-centred and participatory practice, as exemplified by Claire Doherty and David Cross,5 and the work of Lois Keidan and the Live Art Development Agency in the U.K.6 My work with interdisciplinary artists has also aligned with discourse produced by Sarah Cook and Beryl

Graham, in their research of new-media curating, and curatorial and institutional responses to

3 P. O’Neill (ed.), The Curatorial Conundrum: What to Study? What to Research? What to Practice?, Cambridge, MA, The MIT Press, 2016. 4 J. Martinon, The Curatorial: A Philosophy of Curating, London, Bloomsbury Academic, 2013, p. 26. 5 D. Cross and C. Doherty, One Day Sculpture, Bielefeld, Germany, Kerber Verlag, 2009. C. Doherty, Contemporary Art: From Studio to Situation, London, Black Dog Publishing, 2004. 6 L. Keidan (ed.), Access All Areas: Live Art and Disability, London, Live Art Development Agency, 2012.

6 artwork made at the interstices of science and new technology.7 However, the practice of rapidly turning-over contemporary arts programming in publicly-funded contexts, leaves only the briefest of opportunities to reflect on curating, and generally this reflection is instrumentalised around debriefing sessions that focus on an organisation’s future funding or strategic goals. Across the four years of my candidacy, I have focused on identifying my curatorial methodology within the contexts and experiences it produces, and what it means for artists, audiences, and the broader cultural conversations it connects into.

For this CPBR project, I have considered the practices of curators working in similar and related thematic and conceptual territories to The Patient, including Petra Kuppers and Ine

Gevers, whose projects I discuss in Chapter 2, as well as a range of historical projects that engage with the medical patient as subject. With its focus on the medical subject and artist- as-patient, my research also converges with curatorial research in the science-museum context, which I discuss in the same chapter. It is grounded in embodied work with artists, materials, and audiences, and draws from curator Lizzie Muller’s concept of “Reflective

Curatorial Practice” which adapted the methodologies of Donald A. Schön’s The Reflective

Practitioner (1991), for curatorial purposes.

Reflective Curatorial Practice

In The Reflective Practitioner (1991), Schön presents “reflection-in-action” as a methodology to account for how professional practitioners solve problems in the everyday. He writes,

7 S. Cook and B. Graham, Rethinking Contemporary Curating: Art After New Media, Cambridge, MIT Press, 2010.

7 When we go about the spontaneous, intuitive performance of the actions of

everyday life, we show ourselves to be knowledgeable in a special way. Often we

cannot say what it is that we know. When we try to describe it we find ourselves

at a loss, or we produce descriptions that are obviously inappropriate. Our

knowing is ordinarily tacit, implicit in our patterns of action and in our feel for the

stuff with which we are dealing. It seems right to say that our knowing is in our

action.8

In this quote, Schön draws out the difficulties that professionals face in claiming what they do in terms of a method, which resonates with my ability to articulate my own practice prior to undertaking this CPBR. In particular, my interest in Schön resides in two of his key notions. The first is that in attending to ‘situations’ and ‘problems’ an experienced practitioner will draw from a “repertoire of examples, images, understandings, and actions.”9

The second is that in attending to a problem or situation, the practitioner enters into a

“transactional” relationship with it, so that the action of the practitioner towards a situation will change it, but they too are changed by that situation.10

In her thesis, The Experience of Interactive Art: A Curatorial Study (2008), Muller interprets

Schön’s ideas as the basis from which to assess how her actions as curator were advancing her goals in relation to the development of two specific artworks.11 Muller describes the private and public processes of this assessment, which included a repertoire of actions as well

8 D. Schön, The Reflective Practitioner: How Professionals Think in Action, 2nd ed., Farnham, Surrey, Ashgate Publishing Limited, 2011, p. 49. 9 Ibid., p. 138. 10 Ibid., p. 150-151. 11 E. Muller, The Experience of Interactive Art: A Curatorial Study, PhD diss., Sydney, New South Wales, University of Technology, 2008, p.30.

8 as formal, documented points of engagement with artists and stakeholders.12 My own processes of reflection-in-action include: writing and re-writing the exhibition rationale and communicating this to artists and stakeholders; meeting with artists at different stages of developing work; running continuous email correspondence about the exhibition and individual works with artists, lenders, fabricators, suppliers and installers; traveling to creative research spaces and documenting my experience in personal notes and photographs; writing notes on individual projects, their conceptual rationales and their requirements for presentation; communicating structural and logistical information to numerous parties and adjusting this material as information flowed back; writing a catalogue essay and texts reflecting on the exhibition and its meanings for audiences; producing an informal document reflecting on the kinds of labour I enacted as a curator with each work and artist. These processes include actions that I have repeated, adjusted, and finessed over the years. I see reflections of these in Schön’s reflection-in-action, as a process that “spirals through stages of appreciation, action, and reappreciation.”13

Reciprocity in the Artist/Curator Relationship

Throughout exhibition development, my enactment of Schön’s “transactional” practitioner/situation relationship, occurs frequently and repetitively, with every artist, artwork, collector, and institution involved.14 In a more important way, Schön’s notion of the

“transactional” relationship is something that resonates strongly with my understanding of the reciprocal relationship that I cultivate with particular artists, with whom I have a longer-term connection. The idea that the practitioner changes a situation and is changed by a situation

12 Ibid., p. 31. 13 D. Schön, The Reflective Practitioner: How Professionals Think in Action, 2nd ed., Farnham, Surrey, Ashgate Publishing Limited, 2011, p. 132. 14 For instance, the inclusion of the work of ORLAN into an exhibition privileging the medical patient perspective, casts her practice into a different narrative of contemporary art. Simultaneously as curator, I am bound to display the work in the manner in which her studio authorises, and for a particular sum.

9 through their actions, correlates to my experience of longitudinal engagement with the artists

John A. Douglas and Helen Pynor, without whom this research project would not exist.

Curating new, experimental, interdisciplinary artwork with living artists is to be in the thrall of, and to be preconditioned to, change and changeability. Reciprocity between curator and artist facilitates a supportive dialogue that is responsive and open to such change, and to being changed.

To address the impacts of these reciprocal relationships on the development of my own curatorial practice, I conducted post-exhibition, semi-structured, narrative interviews with the four artists who produced new works shown in the exhibition: John A. Douglas, Helen Pynor,

Guy Ben-Ary and Eugenie Lee. On a practical level these interviews enabled debriefing and reflection on many aspects of our working process, as well as conversations enabling us to prepare artworks for future touring to different and less well-equipped contexts in regional

Australia.15 These interviews were also undertaken in order to bring the artists’ voices into my reflective process and into their case studies for this thesis, rather than presenting an account of our work together entirely from my own perspective. As Mika Hannula (ed.) writes in Artistic Research Methodology: Narrative, Power and The Public (2014), the interview “does not ask what something is but how that something is, there and then (i.e., bound in space and time), in and through an individual perspective as it is perceived and conceived.”16 The interviews were not intended as evidence of curatorial efficacy, rather they add a discursive and enriching dimension to my reflections upon my own practice.

15 Schön’s characterisation of practitioners as adapting situations or problems to specific “frames” is particularly useful in looking at the processes of reconceiving an exhibition within different social and spatial contexts, which is ostensibly a reframing and repositioning of the exhibition into different situations. 16 M. Hannula, J. Suoranta and T. Vadén, Artistic Research Methodology: Narrative, Power and The Public, New York, NY, Peter Lang, 2014, p. 39.

10 In addition to artists’ quotes from semi structured interviews, I have included descriptive accounts of my own experience of working with John A. Douglas, Helen Pynor, Guy Ben-

Ary and Eugenie Lee, with these accounts introducing each of the artists’ case studies in

Chapters Three, Four and Five. In these first-person texts, I seek to place my particular subjectivity within the context of my experience of artists’ works, and works in development.

Care in Curating

There are two, key definitions for the noun, ‘care’ (OED) that intersect in the performance of this curatorial practice-based research. The first can be readily connected to traditional, institutional forms of curating in the “serious attention or consideration applied to doing something correctly to avoid damage or risk.” This kind of care can be easily applied to objects, archives, registration tasks and administrative processes related to the curatorial. The second is providing for “what is necessary for the health, welfare, maintenance and protection of someone or something.” This definition is powerfully evocative of living subjects, rather than objects as the things attended to. The melded object and subject, as the focus of attention for myself as curatorial carer or caregiver, crucially underpins this research. This melding takes place in the contexts of Biomedical Art, which brings the care territories of art and healthcare together.

‘Care’ is often invoked in literature examining contemporary curating, as a way of demarcating the shift in professional responsibilities between the behind-the-scenes role of the curator in traditional collecting institutions of the 18th century including museums, and the public-facing, conceptual and intellectual activities of the independent curator, emerging

11 since the 1980s.17 In this way, care can be somewhat consigned to the history of curating, and referenced as a background, etymological vestige. In a 2002 interview with Beti Zerovc,

British curator Charles Esche explained of these past meanings and attachments to the word,

there is very little relationship between this notion of caring for a collection or a

child or whatever and the contemporary meaning of curator. So you could say

we should actually find another word, because I am not sure that historical

connection is very useful.18

I agree with Esche’s opinion on the questionable applicability of the traditional meaning of the term ‘curator’ to all of the different modes in which contemporary curating is deployed across institutions, commercial galleries, festivals, biennales, fairs, events and as independent practice. This CPBR interrogates my own practice in relation to an emerging field of art, in which I find that care is a useful descriptor for curatorial activity focused on the lively and the living, and which has the potential to be expanded upon and redefined.19 More recent discourse on curating has recuperated the notion of care towards a number of characteristics of contemporary curating. Curator, writer and previous Director of the Independent Curators

International (ICI), Kate Fowle, engages with care in her short essay Who cares:

17 As Paul O’Neill states in the introduction to his anthology of essays, The culture of curating and the curating of culture(s) (2012), “the figure of the curator has moved from being a caretaker of collections - a behind-the- scenes organiser and arbiter of taste - to an independently motivated practitioner with a more centralised position within the contemporary art world.” P. O’Neill, The culture of curating and the curating of culture(s), Cambridge, MA, The MIT Press, 2012, p. 9. 18 B. Zerovc, ‘Interview with Charles Esche’, When Attitude Becomes The Norm: The Contemporary Curator and Institutional Art, Lubljana, Igor Zabel Association for Culture and Theory, 2015, p. 150. 19 In this interview with Zerovc, Esche does refer to the definition of curator in Scottish law, where a curator is a person who looks after a child whose parents have died. He suggests that this meaning “could be quite interesting in the artist-curator exchange.” Ibid.

12 Understanding the Role of the Curator Today (2010) in order to reinstate complexity into increasingly binary discourse on the curatorial, she writes:

There is a widening divide between two camps—the independent and the

institutional—that supposedly signifies where curatorial allegiances lie in relation

to the “historically bound” aspect of the profession. These categorizations are

overly simplistic, giving rise to restrictive perceptions of the role of the curator

even among those working in the field.20

Fowle’s essay settles on curating as a highly contingent practice, enacted in a multiplicity of ways and contexts, and calls for thinking on curating as an “expanded field”.21 Terry Smith’s

Thinking Contemporary Curating (2012), published by ICI investigates an array of these expansions. Of the many curatorial actors he encounters in this work, he describes one kind of actor as ‘“infrastructural activists’” who initiate a “contemporary model of cooperative caring for art, artists, institutions and audiences.”22 Smiths’ observation aligns very closely with my curatorial thinking and acting towards Biomedical Art, which accounts for the care of artists, lively materials and audiences. In her essay, Support Acts: Curating, Caring and

Social Reproduction (2016), Helena Reckitt of Goldsmiths, University of London, addresses the affective labour of curating in establishing and maintaining social networks, and networks of patronage for institutions.23 In Martinon’s text, The Curatorial: A Philosophy of Curating

(2013), Stefano Harney and Valentina Desideri write ficto-critically on the curator as a carer and caretaker for space and as one “who operates through care, an ongoing care to make

20 K. Fowle, ‘Who cares? Understanding the Role of the Curator Today’, in Arrhenius, S., Rand, S., Kouris, H. (eds.), Cautionary Tales : Critical Curating, New York, NY, Apex Art, 2010, p. 18. 21 Ibid. 22 T. Smith, Thinking Contemporary Curating, New York, NY, Independent Curators International, 2012, p. 252. 23 H. Reckitt, ‘Support Acts: Curating, Caring and Social Reproduction’, in Journal of Curatorial Studies, vol. 5, no. 1, 2016, pp. 6-30.

13 space…” for art.24 From the same anthology, Stefan Nowotny draws upon the classical fable of Cura (a name that translates to care or concern) by the author Hyginus, and proposes that those “possessed” by the concern of Cura, attend to the curatorial.25 These ideas of being possessed by care, operating through care, and caring for relationships and networks, align with aspects of the embodied and attentive curatorial care that I detail throughout this thesis.

I view my curatorial practice as embodied principally around my care for others. I do not seek to present this way of curating as a “better” way of curating, but one that is particularly suited to my repertoire of practical skills, and to the kinds of artistic projects I am interested in.26 I make myself more adept to the service of others, by engaging with artists and their works throughout the entire life-cycle of their projects. Through this form of embodied attention, I seek to put my comprehension of artwork to use through multiple vectors, from the material and practical, to the intellectual. In finding methodological similarities in

Schön’s processes of reflection-in-action and repertoires of practice,27 I perceive my own repertoires operating as a continuous background process to the foregrounding of my attentive care for others: artists, lively materials, and visitors, as I define them through the chapters of this thesis.

24 S. Harney and V. Desideri, ‘A Conspiracy Without a Plot’, in Martinon, J.P. (ed.), The Curatorial: A Philosophy of Curating, London, Bloomsbury, 2013, p. 125. 25 S. Nowotny, ‘The Curator Crosses the River: A Fabulation’ in J.P. Martinon (ed.), The Curatorial: A Philosophy of Curating, London, Bloomsbury, 2013, p. 64. 26 In Sarah Pierce’s text, The Simple Operator, she writes on some of the conundrums and questions around the perceived importance of the curatorial, including, “Are curators who are attentive and ‘interested’ in the curatorial different to curators who aren’t? Are they better curators?” This CPBR, like others, is focused on the specificity of my own practice and in contributing to discourse on interdisciplinary curating, rather than positioning my work as better than the work of others in my field. S. Pierce, ‘The Simple Operator’, in Martinon, J.P. (ed.), The Curatorial: A Philosophy of Curating, London, Bloomsbury, 2013, p. 99. 27 D. Schön, The Reflective Practitioner: How Professionals Think in Action, 2nd ed., Farnham, Surrey, Ashgate Publishing Limited, 2011, p. 138.

14 The use of care to describe my curating practice in relation to Biomedical Art invokes the medical relationship to care, as attending to the ill. However, as I contend in my survey of artistic practice informing this research, the artist-as-patient emerges as a powerful voice from previously hidden institutional experiences, not as a compliant or worthy receptacle for care. My relationships with contemporary artists making new work for the exhibition are detailed through the case studies situated in Chapters Three, Four and Five of this thesis. In these sections I engage with moments and continuations of reciprocity towards the shared outcome of the exhibition, which show ‘patience’ and ‘care’ alternating across the dynamic of artist and curator.

Within my practice-based curatorial research (for this project, as well as my approach to curating in general), there are various kinds of care at play in my relationships with artists, lively materials, and exhibition visitors and audiences:

- Longitudinal Care—In my engagement with artists and practices over long periods of

time, and through the life-cycle of artworks, and the new ideas and artworks that take

shape through the process and conclusion of projects.

- Situational Care—In my travel to research spaces and physical presence with artists

while they are in the process of making work at various stages. Research for The

Patient has taken me to laboratories, hospitals, pathology and science museums, and

archives.

- Material Care—In my work with archival material, collections, and the physical

actions of preparing artworks and installation apparatus for exhibition. I am attentive

towards fabrication processes and understanding how things are made, which enables

15 me to support the material production of work. This form of care includes my

research and collaboration on the designed elements of the exhibition environment.

- Conceptual Care—In my conversations and meetings with artists regarding the

conceptual development of their works, and the exchange and sharing of knowledge

to support problem-solving, presentation and display.

- Receptive Care—In my presentation of public programs that seek the input of

expertise and knowledge from different disciplines, as well as the active involvement

of locals, visitors and audiences.

- Emotional Care—In my relationships with artists, which extends beyond the

normative or official associations of artist and curator. Working independently on this

project, without the supportive infrastructure of a larger cultural organisation,

museum, or gallery, enabled the flourishing of collaborative and honest friendships

with the artists with whom I was working.28

1.3 Chapter Summary

Chapter 2 Situating Biomedical Art, directly addresses the first research question for this project. It provides an account of the disciplines, histories, artists, and theorists that contribute to my understanding of the emerging field of Biomedical Art. For my research and the curation of the exhibition, The Patient, they manifest the background or foundational conditions for the existence of Biomedical Art. Firstly, I give a brief summary of Bioart, and engage with some of the key practitioners in this field, and their contributions to discourse

28 For the past two decades I have been very reluctant to describe any of my activities as a curator, as collaborative. Until only recently, I have worked as a curator for a wage in public institutions, and have felt very strongly that the economic disparities between artists and arts administrators negate the possibilities for true collaboration. Beyond the financial inequity, there is also institutional power which ultimately protects the institution, and limits the activities and behaviours of artists.

16 relating to the aesthetics and ethics of working with living material. Due to my geographic attention to predominantly Australian practice, I focus on the work of the Tissue Culture and

Art Project based at SymbioticA in Western Australia in order to look at Bioart and its expansions.29 The second and more substantial part of this chapter considers the different practices of artists-as-patients from the 1970s to today, whose works represent the lived experience of the medical patient subject in art. This survey of work also includes writing and curating on the patient subject, and curatorial and institutional approaches to presenting intersections of art and medicine.

Chapter 3 Care and the Artist, considers the situation of the artist-as-patient in relation to contexts of medical and institutional care. I engage with art works in The Patient to delve into the strategies and processes used by artists to overcome the marginalisation of patient perspectives, and to shift power dynamics within and outside of institutional frameworks. I engage with Michel Foucault’s history of medicine, The Birth of the Clinic: An Archaeology of Medical Perception (1963) and his articulation of the medical gaze. Foucault’s account of the development of modern medicine out of the tumult of the French revolution and the rationalism of the Age of Enlightenment, provides a foundation for understanding the situation of the contemporary medical patient in relation to power and knowledge. The artistic practices represented in The Patient problematise the duality of the doctor/patient relationship as it extends to knowledge and agency, and present alternative possibilities for artistic collaboration between artists, researchers, specialists, and medical communities.

29 Another organisation that has supported open-ended research between artists and scientists in the production of Bioart projects (among many other kinds of practice) in Australia is the Australian Network for Art and Technology (ANAT) in Adelaide.

17 Extending from the complex of care, I analyse my curatorial labour in relation to the artists in the exhibition and these issues, and examine how curating through longitudinal and situational care is mobilised with artists, their agents, and collaborators. I provide a case study of John A. Douglas to look at the synchronicities and reciprocities of his work as artist- as-patient and mine as curator of Biomedical Art. Through Douglas I also introduce the intersection of the artist-as-patient with the processes of Bioart, lively materialities and the artist examining their experiences through scientific processes, which unfolds throughout the subsequent chapters.

In Chapter 4 ‘Care and Lively Materials’, I focus on the material qualities of Biomedical Art and the engagement of artists with biological processes, cell and tissue culture, and scientific research tools to utilise or engage with human medical experiences. Artists working in research contexts engaging with biological material and with medical research and treatment, for the purpose of their creative practice, illuminate discourse on New Materialism. New

Materialism is a strand of late-twentieth and early twenty-first century thinking that challenges the human-centred theories and practices of modernity permeating most forms of disciplinary enquiry, as well as the relationships that humans have formed with the rest of life and matter on earth (and beyond).30 In particular, Jane Bennett’s writing on the agency of lively matter and lively objects—the idea that things, materials, non-humans, also act and affect change in the world—finds reflections in the works of artists engaging with transplantation, the extension of life outside the body, and the use of machines to maintain life and alter perception.

30 B. Bolt, ‘Introduction: Towards a “New Materialism” Through the Arts’, in Barrett, E. and Bolt, B. (eds.), Carnal Knowledge: Towards a ‘New Materialism’ Through the Arts, New York, NY, I.B. Taurus & Co Ltd., 2013, pp. 1-3.

18 Donna Haraway’s concepts of the network,31 “situated knowledge” and “partial perspectives”,32 manifest in the collaborative ways that artworks using the body and its materials, are made with both human and non-human actors. Haraway’s conceptualisation of the cyborg is important to my research, as the actions, representations, embodiments and performances of artists-as-patients utilise the technologies, apparatus, surveillance systems, surgical techniques, and treatments that intrude upon their bodies in the medical-health complex, for their own ends. They redirect them and recuperate them aesthetically as art. The inextricable connection of aesthetics to ethics that these artists not only suggest but intentionally interrogate through their work, finds theoretical grounding in Karan Barad’s idea of the “entanglement” of matter with meaning.33 With Biomedical Art’s return of the human subject to the scientific research and laboratory contexts from which Bioart has flourished, it has brought along with it, laboratory animals, machines, pharmaceuticals and other active agents of medical experience. My engagement with New Materialist theory enables me to contextualise the knowledge gained by artists working in the biological science and medical research contexts, within a larger scope of rethinking around the autonomy and sovereignty of the human subject and human body.34

In Chapter 5 Care and the Visitor, I reflect upon how my curating of Biomedical Art is expressed in the exhibition and public programs of The Patient, for visitors and audiences. In

31 D. Haraway, ‘A Cyborg Manifesto: Science, Technology, and Socialist-Feminism in the Late Twentieth Century’, in Manifestly Haraway, Minneapolis, MN, University of Minnesota Press, 2016, pp. 45-46. “I prefer a network ideological image, suggesting the profusion of spaces and identities and the permeability of boundaries in the personal body and in the body politic.” While Haraway refers specifically to women in the integrated circuit, I am applying this notion to the subjects of my enquiry, as well as myself as curator. 32 D. Haraway, ‘Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective’, Feminist Studies, Vol. 14, No. 3. Autumn, 1988, pp. 575-599. 33 K. Barad, ‘Living in a Posthumanist Material World’, in Smelik, A. and Lykke, N. (eds.), Bits of Life: Feminism at the Intersections of Media, Bioscience, and Technology, Seattle, WA, University of Washington Press, 2008, p. 173. 34 B. Bolt, ‘Introduction: Towards a “New Materialism” Through the Arts’, in Barrett, E. and Bolt, B. (eds.), Carnal Knowledge: Towards a ‘New Materialism’ Through the Arts, New York, NY, I.B. Taurus & Co Ltd., 2013, p. 3.

19 particular, I consider the processes through which my visualisation of a hybrid exhibition environment; situated conceptually between the museum, the laboratory, and the clinic, was realised. I discuss how working across the different disciplinary spaces of Biomedical Art, transfers the aesthetics and ethics of scientific and medical research contexts through the work of artists and into exhibition design and public programs, creating a discursive space for thinking about, and sharing knowledge of medical experience. In this chapter, I revisit

Foucault and reflect upon how different works and facets of the exhibition problematise the idea of the ‘medical’, diagnostic or otherwise objectifying gaze, including the very deliberate layout and aesthetics of the exhibition design.

I use Eugenie Lee’s participatory project, Seeing is Believing (2016), as a case study to consider the potential for Biomedical Art practice to reach beyond the objectifying problematics of artistic representation, to create experiences that elicit understanding, and suggest empathic pathways for sharing knowledge. I articulate my curatorial care for visitors through analysis of my conceptual, material and receptive attention as it is expressed in the selection of works and exhibition design, and through the development of the exhibition program as supportive scaffolding for visitor experience. This chapter gives me opportunity to reflect on my curatorial care through the iterative nature of the exhibition’s touring outcomes, and the kinds of public programs that were offered in those contexts.

20 1.4 Outcomes and Contributions to Knowledge

Outcomes

This Curatorial Practice Based Research has resulted in a number of significant outcomes:

1. Exhibition and Catalogue

The Patient: The Medical Subject in Contemporary Art was presented at UNSW Galleries in

June 2016, and its catalogue was launched at the close of the exhibition in August. The project included works by twelve contemporary artists and groups, from Australia, U.K.,

U.S.A and Canada. I was successful in funding the project and its touring iterations through state and federal government grant rounds, which demonstrates its value from the perspective of Australia’s public cultural remit. The Patient was also a unique exhibition in the Australian context, as I have found no comparable historical or recent project that engages with the patient perspective on general medicine in the contemporary art sector.

The exhibition created an interdisciplinary environment including facets of the museum, the laboratory and the clinic, where different images, narratives, representations, and embodiments could come together and present an equivocal, diverse perspective on our relationship to the medical health complex, and our human capacities and limitations in extremis. My CPBR produced an exhibition that was not centred on health messaging, or therapy, or education, or on a particular art form or media. Rather, it invited diverse approaches to artistic practice, as well as the aesthetics and complex individual experiences of medicine, into the same space. I curated a diverse public program consisting of talks, performances, forums, workshops and activities, and film screenings to create a lively context for audience participation. The publication of the exhibition catalogue also provided a document of the exhibition, and discourse around it, which was disseminated to a readership

21 beyond the location and timing of the original exhibition. It was also available as an interpretative tool for audiences of the touring exhibition.

2. Exhibition Tour

The exhibition was developed with the intention that it would reach diverse audiences, and it toured from an initial exhibition in Sydney at UNSW Galleries, to two regional venues in

Australia in 2017 and 2018. While I spent the early years of my candidacy on the research and development of The Patient, the second half of my candidacy was focused on traveling with the exhibition, reconfiguring it, installing it, presenting its public programs and meeting its audiences in different parts of Australia. The exhibition environment was designed with artist Shahmen Suku, who fabricated demountable modules for the display of artworks, which enabled the science-inspired aesthetic of the exhibition to be carried forward into all of its venues. Aspects of the public program for the exhibition were offered as part of the exhibition tour, and this enabled galleries to invite local experts into discourse with artists and the exhibition as a whole. The three iterations of the exhibition reached a total of 18,000 people.

Contributions to Knowledge

1. Biomedical Art

A key contribution of my research is the articulation of Biomedical Art as an emerging field of interdisciplinary artistic practice, supported by my historical research of the work of artists-as-patients. This research draws together different lineages, social contexts and politics of artistic practice centred on lived, medical experience. Biomedical Art was a term that I started to think about to describe an emerging field of practice, characterised by its engagement with the medical and health sector, its use of scientific research to delve into

22 human biology, neurology or pathology, and its use of the human body and medical patient body as the locus for aesthetic experience. My exhibition research for The Patient enabled me to assemble a history and ontology for this field, through the embodied, attentive actions of my curating.

2. Curatorial Care

Through reflective curatorial practice, I have developed and articulated an embodied, attentive approach to curating interdisciplinary practice at the interstices of art and medicine.

Throughout this thesis, I show how this approach was deployed with the artists, lenders, artworks, program participants, visitors, and audiences that I have worked with to bring the exhibition together. In particular, my approach engages with an expansion of the practice of curatorial care, which has foundationally been focused on the conservation of objects and collections. In this CPBR, I have examined the connection of curatorial care to other forms of care that are experienced by artist-as-patients through their association with institutions, communities and loved ones. In this way, I conceive of care in my curatorial practice as networked, attentive and aware of other caring practice related to Biomedical Art and the artist-as-patient.

Together these two contributions to knowledge offer a new way of understanding and of curating an emerging area of creative practice—Biomedical Art—that is likely to become increasingly significant in the coming years. As biomedical technologies continue to develop, extending life and creating ever-expanding opportunities for medical intervention, our understanding of what the possibilities and limits of human life is, will also change. The curation of artistic practice that interrogates the ethics, politics and aesthetics of these

23 possibilities and limitations, will support meaningful public discourse on issues that have the potential to impact us all.

24 2. Situating Biomedical Art

While I am presenting Biomedical Art as an emerging field, there is an array of practice and discourse involving art and its intersections with medicine, and biomedical research in art, that informs it. In this chapter, I present my research on the art, artists, curatorial and museum practices, literature and theory that have contributed to my thinking about and conception of

Biomedical Art. Here I predominantly address my first research question:

As I outline in my introduction, my interest in describing and curating this field was stimulated by new artistic practice that I was engaged with as a curator over several years.

Broadly, what I thought I was apprehending in these projects, was a new human presence in the research contexts of Bioart, concerned with the experiences and potentials of the human subject in biomedicine. I have likened this situation to the Bioartist turning an outward-facing lens of scientific and aesthetic enquiry, back upon themselves.35 My work in this chapter reveals that my instinct towards addressing an expansion of Bioart is partially validated.

35 I presented a paper on my early conceptions of Biomedical Art and Curatorial Care at the International Symposium on Electronic Art (ISEA) in Vancouver, 2015. B. Dean, ‘The Patient Subject: Collaborative Biomedical Art and Curatorial Care’, ISEA 2015, proceedings of the 21st International Symposium on Electronic Art, Brighton, 2015, pp. 1-4, http://isea2015.org/proceeding/submissions/ISEA2015_submission_225.pdf, (accessed 29 August 2018).

25 However, situating Biomedical Art as an emerging field is much more complex than drawing a straight line of influence from one area of creative practice to another.

In Lindsay Kelley’s Bioart Kitchen (2016), the artist and academic asserts the emergence of

Bioart from other cultural histories than solely the “latest manifestation of new media and digital art.”36 I am similarly tasked in this project, with presenting the field of Biomedical Art as entangled with a range of different lineages, aesthetics, ethics, and politics, and as not only a recent fragmentation from Bioart. In particular, the history of performance art and body- based art practice of the 80s and 90s includes examples of artists working with medical apparatus and their own medicalised or pathologised bodies. In the same period of the late

20th Century, artists responded powerfully to the epidemics affecting the gay community, intersecting with activists in health and medicine. In terms of curating, museums and educational science contexts represent the medical subject in collections and thematic exhibitions, and often work with contemporary artists. The health sector is also broadly embracing art as a therapeutic tool, and there are contemporary artists engaging with programs and residencies in this area.

My research into Biomedical Art including the artist-as-patient contributes to recent discourse on the medical subject, particularly in relation to performance and performance art.

There are two texts in particular that intersect with my research. The first is The Scar of

Visibility: Medical Performances and Contemporary Art (2007) by curator and academic at

University of Michigan, Petra Kuppers. The second is an edited collection of essays called

Performance and the Medical Body, assembled by academics in the dramatic arts, Alex

Mermikides and Gianna Bouchard. Kuppers is a practitioner—an artist and curator—with

36 L. Kelly, Bioart Kitchen: Art, Feminism and Technoscience, London, I.B. Taurus, 2016, p. 2.

26 disability, connected with her academic scholarship engaging with disability in the arts. In

The Scar of Visibility (2007), Kuppers uses the extended metaphor of the scar that “knits” throughout her text, to intertwine medical performance with embodied forms of knowledge.

Kuppers shares her own perspectives as an artist with disability, and includes references to her own curatorial and artistic projects. She writes that she is, “Working through the contradictions and alignments between biomedicine and personal experience.”37 Kuppers’ writing addresses some of the artists included in The Patient exhibition, namely Bob

Flanagan and Sheree Rose, and ORLAN. In addition to these artists, Kuppers engages with outsider art, HIV and AIDS, and their manifestations in museums, as well as the mainstream representation of patients, hospitalisations, injuries and disease in popular film and television.

Her work casts a broader view on medical performance in contemporary art than my research, and is informed by twenty years of practice in community arts and disability activism.38

In their collection of essays on Performance and the Medical Body, Mermikides and

Bouchard engage with recent scholarship on a range of topics, from the historical relationship of medical surgery to theatre, early cabinets of curiosity, the use of theatre as therapy, to embodied pathography in performance. They also include essays and performance texts by artist practitioners including Petra Kuppers, Brian Lobel, Martin O’Brien, Clod Ensemble and Helen Pynor. Pynor’s essay includes some of her research and thinking about the

“process” of death versus the idea of death as a momentary event that she explores in the work, The End is a Distant Memory (2016) and which is included in The Patient.39

37 P. Kuppers, The Scar of Visibility: Medical Performances and Contemporary Art, Minneapolis, MA, University of Minnesota Press, 2007, p. 3. 38 Ibid., p. 2. 39 H. Pynor, ‘On the Emergent Properties of Death: When Words Fall Apart’, in Mermikides, A. and Bouchard, G. (eds.), Performance and the Medical Body, London, United Kingdom, Bloomsbury Methuen Drama, 2016, p. 176.

27 In the work of the contemporary artists whose practices influenced this research into

Biomedical Art I have identified some common characteristics:

- The work is collaborative, with reciprocal outcomes for participants.

- The work involves the employment/engagement of specialist research scientists or

technologists.

- The work connects with the health and medicine sector (through surgical

procedure/clinic visitation/patient community/lived experience).

- The work engages with the human body as the locus or material for aesthetic

experience (it uses the human body, or takes from it).

In order to address the different histories and lineages of Biomedical Art, I am dividing this chapter into two parts. The first addresses Bioart and key elements of discourse on ethics around the use of tissue culture for art. Here, I focus on the work of the Tissue Culture and

Art Project, based at SymbioticA in Perth, Western Australia, as their work has been formative to my curatorial thinking and my understanding of care when applied to art and aesthetics. The second considers the artist-as-patient and the medical patient as creative subject from a range of contemporary art perspectives, including artistic practice and curation. All of the artists, performers, curators and institutions in this section have a bearing on my understanding of Biomedical Art, and the questions it poses for curating.

28 2.1 Bioart and SymbioticA

Bioart and its Expansions

The field of contemporary arts practice known as Bioart has been active for over thirty years internationally, particularly in the western context including Australia.40 In his book Signs of

Life: Bio Art and Beyond (2007) Eduardo Kac articulates three “defining principles” for

Bioart, which may be “wholly or singly adopted by bio-artists.” They are “(1) the coaching of bio-materials into specific inert shapes or behaviours; (2) the unusual or subversive use of biotech tools and processes; (3) the invention or transformation of living organisms.”41 For

Kac at this time, the focus of Bioart was subversion, “randomness,” “transgenic” future life, and radical possibilities of intervening in evolutionary processes.42 In simpler terms, Robert

Mitchell generalises that Bioart, “involves the artistic use of biotechnology,”43 and artist

George Gessert defines it as art, “made of or by living organisms.”44

Over the decades, many artists have taken up tissue-based and biological art research to create Bioart in the ways that Kac enumerates; growing living objects of art;45 using transgenics to create modern-day chimeras;46 isolating and proliferating bacteria into

40 Many artists in this field cite Edward Steichen’s exhibition of the Delphiniums he bred himself at the Museum of Modern Art in 1936 as the first deliberate example of Bioart. I refer to George Gessert’s reference to this example in G. Gessert, Green Light: Toward an Art of Evolution, Cambridge, MA, The MIT Press, 2010, p. 1. 41 E. Kac, Signs of Life: Bio Art and Beyond, Cambridge, MA, MIT Press, 2007, p. 18. 42 Ibid. 43 R. Mitchell, Bioart and the Vitality of Media, Washington, WA, Washington University Press, 2010, p. 4. 44 G. Gessert, Green Light: Toward an Art of Evolution, Cambridge, MA, The MIT Press, 2010, p. xviii. 45 The Semi-Living Worry Doll (2000) and Pig Wings (2001) by the Tissue Culture and Art project are examples of semi-living works of art. O. Catts and I. Zurr, ‘Semi-Living Art’, in E. Kac, Signs of Life: Bio-Art and Beyond, Cambridge, MA, MIT Press, 2007, pp. 238-239. 46 Eduardo Kac’s GFP Bunny (2000), is what he describes as transgenic art. E. Kac, Telepresence, Biotelematics, Transgenic Art, exhibition catalogue, Maribor, Slovenia, Publication of the Association for Culture and Education, 2000, p. 101.

29 figurative forms;47 growing “victimless” meat and leather,48 and making creative provocations from the laboratory context that stimulate discourse around the use of living tissue for art. The aesthetics of Bioart has rearticulated the foundational materials of life:

DNA, cells, skin tissue, bacteria, neural clusters, organs and organisms, as art objects and

“fuzzy”, not-quite subjects.49 These ‘living’ lively materials are accompanied by laboratory processes and apparatus, from petri dish protocols and time-lapse microscopy, to tissue culturing and gene sequencing—and make visible, or draw emphasis to their liveliness. In the case of the manifestation of complete organisms such as Kac’s GFP Bunny (2000)50 or

George Gessert’s hybridised irises,51 the plasticity of liveliness and the unfixed, manipulable quality of life’s building blocks are made tangible for general audiences and publics.

As this diagram—modified by George Gessert, from an original diagram by Pier Luigi

Capucci in 2007—shows, the field of Bioart is expanding into multiple specialist or sub- specialist areas. However, according to this source, there is no provision for human biomaterial in this field, as its foundational terminology specifically excludes the human.52

47 Peta Clancy’s Visible Human Bodies (2005) used live bacteria to create figurative drawings on petri-dishes. P. Clancy, ‘Visible Human Bodies’, Peta Clancy, 2005, http://www.petaclancy.com/_root/vhb_1.html, (accessed 25 July 2018). 48 The Tissue Culture & Art Project, Victimless Leather - A Prototype of Stitch-less Jacket grown in a Technoscientific "Body", Nedlands, WA, TC&A, http://www.tca.uwa.edu.au/vl/vl.html, (accessed 14 April 2018). 49 I. Zurr and O. Catts, ‘Are the Semi-Living semi-Good or semi-Evil’, in Ascott, R. (ed.?) Engineering Nature: Art and Consciousness in the Post-biological Era, Bristol, Intellect Books, 2006, p. 77. 50 E. Kac, Telepresence, Biotelematics, Transgenic Art, Ljubljna, Slovenia, Association for Culture and Education, 2000, p. 101. 51 Revolution Bioengineering, Bioart Through Evolution: George Gessert, http://revolutionbio.co/bioart/bioart- through-evolution-george-gessert, (accessed 14 April 2018). 52 Terms to describe living art and allied forms of expression. Modified from a diagram by Pier Luigi Capucci, in Art Biotech, ed. Hens Hauser, Pier Luigi Capucci, and Franco Torriano (Bologna: CLUEB, 2007), 11.

30 Figure 1: Diagram of Bio-Art, 2007, copy referenced by George Gessert from original diagram by Pier Luigi Capucci, 2007.

SymbioticA

My introduction to Bioart came through SymbioticA with the presentation of their exhibition

BioFeel (2002), held at the Perth Institute of Contemporary Arts (where I worked as exhibition manager). The exhibition was accompanied by a symposium called Aesthetics of

Care? which invited their local and international artists to present on their practice-based research, with particular focus on ethics and the presentation of Bioart to the public.53

Working with SymbioticA introduced me to the idea of care as creative practice, and to artists working the field of Bioart, including George Gessert, Andre Brodyk, Marta De

Menezes, Amy Youngs and Guy-Ben Ary.

53 SymbioticA, The Aesthetics of Care?, Nedlands, WA, SymbioticA, School of Anatomy and Human Biology, University of Western Australia, 2002, http://www.tca.uwa.edu.au/publication/THE_AESTHETICS_OF_CARE.pdf, (accessed 14 April 2018).

31 Three out of the four artists that I am writing about as case studies for this thesis, and with whom I have worked for many years—Helen Pynor, John A. Douglas and Guy Ben-Ary— have undertaken periods of residency at SymbioticA. Guy Ben-Ary has been a researcher and artist-in residence at SymbioticA since its inception and manages the laboratory,

CELLCentral from the same School of Anatomy and Human Biology.54 As the leaders of

SymbioticA, Catts and Zurr have been central to facilitating other artists and art students in initiating “wet biology practices in a biomedical science department” for art and “non- medical ends.”55 This liberation of the use of the tools of biomedicine for non-medical ends is an idea I will return to in Chapter 4 Care and Lively Materials.

Tissue Culture and New Materialism

The basis of artworks in wet biology and processes that involve biologically ‘living’ things, relates strongly to discourse on new materialism, particularly in Bioart’s critical reflection on the dualism of object and subject. Traveling alongside these lively objects, beings, materials and apparatus, are the ethics and protocols that they are inseparable from. In the crossing of art and science that takes place through Bioart, particular ethical perspectives have been raised to cultural consciousness. As Oron Catts and Ionat Zurr of the Tissue Culture and Art

Project and SymbioticA asserted in an early conference paper:

A new concept is emerging in the continuum of life—that of the Semi-Living. A

Semi-Living entity is a new, autonomous entity located on the fuzzy border

between the living and the non-living, the organically grown and the constructed,

54 University of Western Australia, CELLCentral, Nedlands, WA, Faculty of Science, http://www.science.uwa.edu.au/schools/human-sciences/anatomy-human-biology/cell-central, (accessed 14 April 2018). 55 O. Catts and I. Zurr, ‘Growing for Different Ends’, in The International Journal of Biochemistry and Cell Biology (2014) vol. 56, 2014, pp. 20-29.

32 and the object and the subject … the Semi-Living relies on the vet and the

mechanic, the farmer and the artist, the nurturer and the constructor to care for

them.56

Catts and Zurr later distinguished these semi-living forms of life as a new class of being,

“The Extended Body”.57 Their notion of the extended body includes the global mass of tissue, cells, viruses, antiviruses, bacteria and other lifeforms grown in labs, as well as meat and roadkill—the once living bodies of animals that may yet contain living cells. It is this idea of the extended body that I will return to in Chapter 4, to engage specifically with the work of Helen Pynor and Guy Ben-Ary in projects that literally and figuratively extend ideas of the body, as well as of life.

The Ethics of Care

Catts’ and Zurr’s notion of the semi-living—tissue, cultures, bacteria, spores and other lab- grown material—is inseparable from care. Their “Aesthetics of Care” unites the ethical concerns of looking after, growing and manipulating “semi-living” materials in the form of tissue culture, with their practice and process of art-making. Furthermore, the artists acknowledge in this practice, the investment of both emotional and intellectual energy in their endeavours; that their ritual feedings as well as “killings” of their lab-grown objects and materials are performed as a form of public address to these complex issues, and the culpabilities and responsibilities of artists working in this field.

56 SymbioticA, The Aesthetics of Care?, Nedlands, WA, SymbioticA, School of Anatomy and Human Biology, University of Western Australia, 2002, p. 63, http://www.tca.uwa.edu.au/publication/THE_AESTHETICS_OF_CARE.pdf, (accessed 14 April 2018). 57 O. Catts and I. Zurr, ‘Towards a New Class of Being – The Extended Body’, in Artnode 6, 2006, pp. 1-9, http://www.tca.uwa.edu.au/publication/ia6_2_transvergence_catts_zurr_extendedbody.pdf, (accessed 14 April, 2018).

33 The killing is done by taking the Semi-Living sculptures out of their containment and

letting the audience touch (and be touched by) the sculptures.… The Killing Ritual

enhances the idea of the temporary nature of live and living art, and our responsibility

as manipulators to the new forms of life.58

I reflect on the ritual ‘killing’ of tissue undertaken by Catts and Zurr, to draw attention to the way that these ideas flow through to my care for the life-cycles of artistic projects and the exhibition itself as a lively space with beginnings, endings and continuances. Their practice has brought care, ethics, emotional and intellectual labour; the processes and protocols of culturing and growing life; the many and varied lively forms themselves; and the idea of living things as collaborative (or at least symbiotic) agents; into the aesthetic discourse of

Bioart, and more broadly to intersect with the discourses of new materialisms.

What SymbioticA and other Bioartists do in their addressing of ethics, responsibility as well as the social and cultural impacts of their lively materials, is make the networks of co- dependence between artists, scientists, tools and apparatus, lively materials and audiences quite visible. As Karen Barad writes in Meeting the Universe Halfway (2007), “apparatuses are not merely observing instruments but boundary-drawing practices—specific

(re)configurings of the world—which come to matter.”59 In these works, scientific concepts, methodologies, apparatus and processes are drawn into public, artistic and cultural discourse, where they may have been otherwise invisible to wider sections of the community. The development of creative contexts for Bioart, in which a variety of disciplinary perspectives come together to consider the production of artistic and aesthetic material in the laboratory,

58 I. Zurr, “The Ethical Claims of Bioart: Killing the Other or Self Cannibalism”, in Growing Semi-Living Art, Ph.D. diss., Nedlands, WA, 2008, p. 125. 59 K. Barad, Meeting the Universe Halfway, Durham, NC, Duke University Press, 2007, p. 140.

34 emphasise a porosity which further disturbs the already “discredited”60 boundary of nature and culture. Bioart has the capacity to draw our contemporary human dependence on the non- human—on laboratory animals and the array of organisms that interact with us, including bacteria, fungus and viruses—into public discourse and critical reflection.

While working with the tools of science, Ionat Zurr has argued that artists working with live cultures and tissue may employ some of the same methods and materials in practice as biomedical researchers and engineers, but that their intentions and outcomes may be very different:

The hands on, experiential engagement with materials is also a characteristic of

some of the contemporary engagement with the life sciences. However, there are

some fundamental differences: instead of efficiency and utility, some of the

artistic engagement is purposely about exposing futility, failure and loss of

control as an instrument for cultural discussions, reflections and observations.61

Zurr’s argument about the difference that aesthetic practice and process brings to science contexts, is held by other artists working in areas previously considered to reside in industry.

Keith Armstrong writes on his work in creative robotics that:

Many of us would instinctively conceive of robotics as an industrially driven

endeavour, shaped by the pursuit of relentless efficiencies. Instead, I indicate

60 D. Haraway, ‘A Cyborg Manifesto: Science, Technology, and Socialist-Feminism in the Late Twentieth Century’ in Manifestly Haraway, Minneapolis, MN, University of Minnesota Press, 2016, p. 10. 61 I. Zurr, ‘Of instrumentalisation of life and the vitality of matter: Aesthetics of creation and control in posthuman worlds’ in Dialogues in Human Geography, vol. 2 no. 12, 2012, p. 289.

35 through my practice that the field of creative robotics is emerging with radically

different frames of intention. In other words, creative practitioners might still be

able to shape mainstream experiences of robotic media that retain a healthy

criticality towards such productivist lineages.62

These positions provide interesting analogues to the way that I am conceiving of Biomedical

Art. I do not consider this emerging field as a tool for successfully instrumentalising art for medical innovation, medical messaging, or medical education through aesthetic means. My

CPBR brings together works by artists engaging with science in order to quest more specifically into phenomena tied to human experience, alongside practice that has been produced through lived illness and medical treatment. It does not seek to promote wellness, but to open up discourse on the frailty of all human life, in the context of a society that promotes optimal performance and ableism.

Bioart and the Human

My conception of the idea of ‘Biomedical Art’ has aggregated over a number of years, from curatorial experiences of working with artists towards the presentation of new, interdisciplinary artworks engaging with biological and neurological science research that include human medicine and illness. I was initially compelled by the idea that artists with lived experience of illness and hospitalisation were recuperating ‘the human’ within the field of Bioart. However, as I have described above, the work of Catts and Zurr already complicates the clear delineation of human and non-human offered by the Capucci/Gessert

62 K. Armstrong, ‘Embodying a Future for the Future: Creative Robotics and Ecosophical Praxis’, Fibreculture Journal: Digital Media, Networks and Transdisciplinary Critique, 2017, http://twentyeight.fibreculturejournal.org/2017/01/23/fcj-211-embodying-a-future-for-the-future-creative- robotics-and-ecosophical-praxis/, (accessed 30 July 2018).

36 diagram. In their conceptualisation of The Extended Body, which comprises the gamut of proliferated flesh and tissue, the animal and human are intertwined.

Curatorially, the connection of the animal with the human in biomedical context was brought together in an exhibition co-curated by SymbioticA’s Co-Director Oron Catts called

DeMonstrable (2015).63 Billed as “20 years of artistic, scientific and popular culture responses to the Earmouse,”64 the project included the emotionally devastating work of

Beatriz Da Costa, entitled, Dying for the Other (2012). The work is a three-channel video projection, showing the artist’s personal experience of breast cancer treatment, alongside those of others, while simultaneously representing experiments undertaken in a New York laboratory with mice used for breast-cancer research.65 Da Costa’s work engages with similar themes and ideas to the work of Helen Pynor, who addresses the othering of laboratory animals as stand-ins for human patients. Da Costa’s practice as an artist engaging with Bioart for over ten years, turns the apparatus of Bioart towards her own experience of illness and its entanglements with the animal world and exemplifies with this work, the idea of Biomedical

Art. In Chapter 4, I address the entanglement of human and animal in Biomedical Art through the case studies of Helen Pynor and Guy Ben-Ary.

63 DeMonstrable was Co-curated with Associate Professor Jennifer Johung and Associate Professor Elizabeth Stephens and presented at the Lawrence Wilson Gallery, University of Western Australia. 64 Lawrence Wilson Art Gallery, DeMonstrable, http://www.lwgallery.uwa.edu.au/exhibitions/past/2015/demonstrable, (accessed 21 February 2018). 65 N. Triscott, ‘Beatrice Da Costa 1974-2012’, Nicola Triscott: Art, Science, Technology and Society, 2013, https://nicolatriscott.org/2013/02/24/beatriz-da-costa-1974-2012/, (accessed 31 July 2018).

37 2.2 Artists-as-Patients

While museums and institutions such as The Wellcome Trust and The Hunterian Museum in

London, demonstrate through their collections that disease and pathology, illness, and the medical patient have been the subjects of artistic representation for centuries, and across an array of cultures and contexts,66 I am limiting my focus on artistic and curating practice from the late twentieth century to the present time, in order to draw-out the interdisciplinary and collaborative context for Biomedical Art, which I define as a field emerging from this period.

In this section of my chapter, I engage with artists and their works, and curatorial and institutional projects including exhibitions, performances, and events that represent the medical subject in contemporary art, and particularly the artist-as-patient.

The Camera and Self-Portraiture

The earliest examples of contemporary practice that I include in my research, are self- portraits and autobiographical photographic series made by women artists from the late 70s to

90s. I discuss photographers Carol Jerrems and Jo Spence, whose works are included in The

Patient exhibition, in detail in Chapter 5. These artists use strategies that are familiar to feminist practice of the time, in terms of challenging the invisibility of female experience, by bringing their hidden medical treatment into public view.

66 The Wellcome Collection stems from the collection of Henry Wellcome, “a vast stockpile of evidence about our universal interest in health and the body.” The collection includes objects of medical interest from every continent as well as artworks representing medical treatments and maladies. Wellcome Collection, Medicine Man, https://wellcomecollection.org/exhibitions/Weoe4SQAAKJwjcDC, (accessed 26 July 2018). While the collection of John Hunter at the Hunterian Museum, in the Royal College of Surgeons in London is predominantly specimen-based, it does contain paintings, sculptures and models concerning the medical and anatomical body, from around the world. Surgicat, Welcome to Surgicat, Royal College of Surgeons, http://surgicat.rcseng.ac.uk, (accessed 26 July 2018).

38 Hannah Wilke, whose feminist practice in the 1970s and early 80s included photographs of her own, often naked or semi-clothed torso adhered with small, womb-like lesions and other objects dotted over her skin,67 represented her treatment for cancer in the early 1990s with the adhesions of medical tape, intravenous needles, bandages and catheters to her body.68

Wilke’s offering of her socially and politically pathologised, ‘othered’ female body to the male gaze in the late 70s,69 included a series of works that referenced her mother’s breast cancer. Among these is a diptych portrait of herself and her mother in which both were photographed naked; Wilke covered in metal objects with her gaze directed towards the camera lens; and her mother, Selma Butter, casting her eyes downwards towards the significant scarring of a mastectomy. This work, So Help Me Hannah: Portrait of the Artist with Her Mother, Selma Butter (1979-81), showed a personal, maternal binding between the scarring of women through socially enacted forms of harm, and the physical violence of disease upon the body.70 Two decades later, Wilke’s final photographic series, Intra-Venus

(1991-92), presented images of the artist during treatment for lymphoma, taken with the assistance of her husband, Donald Goddard.71 Here, bandages and tape concealed real surgical wounds and punctures, rather than the symbolic wounds that she presented as intrusions on her body in her early work. Through a series of poses, Wilke presented herself in the guise of the archetypal Venus or Madonna, which transformed her medical wounds into stigmata.72

67 Wilke used the form of the vulva as a symbol throughout a range of her works, including the S.O.S— Starification Object Series (1974). A. Jones, Body Art: Performing The Subject, Minneapolis, MA, University of Minnesota Press, 1998, pp. 182- 183. 68 Intra-Venus (1992-1993) by Wilke was her final body of work. A. Jones, Body Art: Performing The Subject, Minneapolis, MA, University of Minnesota Press, 1998, pp. 185- 189. 69 T. Tembek, ‘Exposed Wounds: The Photographic Autopathographies of Hannah Wilke and Jo Spence’, RACAR: Canadian Art Review, Medical Tabulae: Visual Arts and Medical Representation, vol. 33, no. 1, p. 89. 70 Ibid., p. 89. 71 A. Jones, Body Art: Performing The Subject Minneapolis, MA, University of Minnesota Press, 1998, p. 185. 72 Ibid., p. 92.

39 Amelia Jones, a key biographer of Wilke’s practice has characterised these works as a

“brilliant riposte to those who condemned her work as narcissistic and Wilke herself as exploiting her own beauty.”73 Within each of the projects of Jerrems, Spence and Wilke, the autobiographical account of treatments for and perceptions of illness, is a common thread.

This approach to documenting a first-person account of illness across a range of media and art forms has been described as a form of “Pathography” or “Autopathography”, which has been co-opted and re-framed from the literary field by authors including Tamar Tembeck74 and Emma Brodzinski,75 to include visual arts and performance.

The Performance of Pain

Amelia Jones describes in her histories of performance art and the body in the late 80s and

90s in western contemporary art contexts, that the “certainty” of identity had begun to decentre, shattering “the illusory edifice of autonomous individualism subtending Western patriarchy, transforming the modernist subject (the ‘I’ of the Cartesian cogito ergo sum) into a dispersed, multiply identified postmodern subject.”76 It is in the emerging presence and acknowledgement of female bodies, racially diverse bodies, and queer bodies that pathologised and medicalised bodies such as that of Bob Flanagan appear; performing pain, spilling blood and turning the body “inside out.”77 I discuss Flanagan and his collaborator,

Sheree Rose, whose work is included in The Patient exhibition, in detail in Chapter 3.4.

73 A. Jones, Body Art: Performing The Subject, Minneapolis, MA, University of Minnesota Press, 1998, p. 185. 74 T. Tembek, ‘Exposed Wounds: The Photographic Autopathographies of Hannah Wilke and Jo Spence’, RACAR: Canadian Art Review, Medical Tabulae: Visual Arts and Medical Representation, vol. 33, no. 1, 2008, pp. 87-101. 75 E. Brodzinski, ‘The Patient Performer: Embodied Pathography in Contemporary Productions’, in Mermikides, A. and Bouchard, G. (eds.), Performance and the Medical Body, London, United Kingdom, Bloomsbury Methuen Drama, 2016, pp. 85-97. 76 A. Jones, Body Art: Performing The Subject, Minneapolis, MA, University of Minnesota Press, 1998, p. 198. 77 Ibid., p. 226.

The body-based works of Flanagan and Rose and others from this period, bring previously underground or subcultural practice including BDSM, into broader public consciousness.

Ron Athey is a performer from Los Angeles, whose work used ritualistic piercing, bloodletting, and bondage to present the endurance and suffering of pain to audiences. As an openly HIV positive artist making work with blood in the wake of the HIV and AIDS epidemics, Athey’s work drew the ire of politicians and critics of the National Endowment for the Arts for supporting “the slopping around of AIDS-infected blood.”78 Athey used

Christian images of suffering and other spiritual iconography in the staging of his work, drawing on Saint Sebastian and Jesus Christ to represent the “survival of the AIDS body.”79

Both Amelia Jones and Dominic Johnson, friends of and writers on Athey’s practice have written about affect, emotion and feeling in relation to his performances, and how his embodiment of the body in extremis transfers feeling to audiences, “Activating extreme reactions.”80 As Johnson writes:

To watch Athey perform is to witness him turn his body inside out in performance, up

to the brink of disaster, from which he manages to withdraw more or less intact, with a

gravitas that is both beautiful and devastating.81

78 C. Stortch, ‘Nea Opponents Have Found A New Target In Ron Athey’, Chicago Tribune, 30 June, 1994, http://articles.chicagotribune.com/1994-06-30/features/9406300042_1_nea-money-nea-chairman-jane- alexander-ron-athey, (accessed 9 July 2018). 79 A. Jones, ‘How Ron Athey Makes Me Feel: The Political Potential of Upsetting Art’, in D. Johnson (ed.), Pleading in the Blood: The Art and Performances of Ron Athey, Intellect Books Ltd, 2013, p. 152. 80 Ibid., p. 153. 81 D. Johnson, Pleading in the Blood: The Art and Performances of Ron Athey, Intellect Books Ltd, 2013, p. 10.

41 In this quote, Johnson captures for me, the poetics of artists with illness, othered by normative society, reclaiming their existing, visceral pain and amplifying it for aesthetic expression and political refusal. These works contrast starkly against the use of temporary pain as metaphor in performances of the 1970s by Marina Abramovic, Gina Payne and Vito

Acconci.82 They signal the emergence of other kinds of bodies—dissembled, non-normative, pathologised—into the broader cultural representation and discourse. Other artists performing acts of endurance with the use of medical instruments or props—predominantly used for drawing blood—include Franko B. (UK), Kira O’Reilly (UK), and Fiona McGregor and AñA

Wojak (as senVoodoo, AUS).

In recent years, performances presenting intimate accounts of illness and the embodiment of disease have absorbed some of the characteristics of socially-engaged and participatory art, expanding the possibilities for audiences to enter into discourse or interaction with artists.

This is particularly evident in work from the United Kingdom where ‘Live Art’ which draws from the disciplines of both theatre and fine art, has been institutionally supported for two decades.83 Martin O’Brien is a British performance artist with Cystic Fibrosis, who maintains a solo practice of endurance-based performance and filmmaking, as well as an ongoing collaboration with Sheree Rose, Flanagan’s surviving partner. Their work together includes

Death Trilogy, a trio of performances conceived of by Flanagan and Rose, but not able to be realised before Flanagan’s death. O’Brien’s standing-in for Flanagan as the recipient of consensual violence, while maintaining his own agency in these works, extends the life-span of the ideas of Flanagan and Rose into another generation of artistic practice. His work,

82 Here I refer to work by Abramovic including Rhythm 0 (1974), Gina Payne’s In Sentimental (1973) and Vito Acconci’s Trademarks (1970). 83 Live Art Development Agency, About, This is Live Art, http://www.thisisliveart.co.uk/about, (accessed 25 July 2018).

42 Mucus Factory (2011), performed for the Spill Festival in London involved his undertaking physical activity to clear mucus from his lungs and collect it in jars, recuperating the action of physiotherapy as art.84 Recent solo work by O’Brien elicits the close implication or involvement of strangers, with Anatomy of a Bite (2015) encouraging audiences to explore his mouth, and inviting them to bite his body. This project preceded a film commission representing sick people as zombies called, The Unwell (2015). In this work, O’Brien depicts the dilapidating facades and landscapes of a city that is deserted, except for the lonely, wheezing, coughing presence of the shuffling unwell. O’Brien utilises the low-budget zombie movie genre to address the transgressive potential of the ill, as Bruce LaBruce used it to challenge normative homosexual culture in L.A. Zombie (2010). As a writer and scholar,

O’Brien considers endurance work, and its confluence with experiences of chronic illness in artists including himself, Flanagan and Jill Hocking, as allowing “the experience of the body to be owned by the artist. It becomes an act of personal-political empowerment.”85

Artist John A. Douglas’ endurance performance of Body Fluid II (2010) at Performance

Space in Sydney, was the first occasion of our working together on a project addressing his illness. Douglas used the ten-hour timeframe of peritoneal dialysis treatment for kidney failure, as the framework for a live installation that visitors could step in and out of, or remain for as long as they liked. Like O’Brien, Douglas often exercises cinematic tropes in his practice, and Body Fluid draws on late 70s science fiction including Nicolas Roeg’s The Man

Who Fell To Earth (1976) to represent his chronically ill body as alien, on life support, and

84 M. O’Brien, ‘Performance’, Martin O’Brien: Performance Artist, https://www.martinobrienperformance.com/performance.html, (accessed 11 June 18). 85 M. O’Brien, ‘Performing Chronic: Chronic illness and endurance art’, Performance Research, vol. 19, no.4, 2014, p. 563, https://www.tandfonline.com/doi/pdf/10.1080/13528165.2014.947138?needAccess=true, (accessed 11 June 18).

43 dependent upon machines to survive. I discuss working with Douglas as curator towards The

Patient in detail, as the case study for Chapter 3.

Medical Procedures and Interventions

The professional spaces of medicine have been infiltrated and utilised by some artists for decades. In this section of the review I look at the relationships brokered by artists with medical professionals, to provide medical or surgical services that enable them to make work with their own bodies, or use parts of their bodies as materials. This includes work by

ORLAN, who is included in The Patient exhibition. I consider these works as pre-empting the collaborative work of Biomedical Art in their use of medical services. In most cases, the works described from the early nineties deviated from the strict medical patient/doctor relationship and are not cited by the artists as collaborative. Ideas of the mediatised body, the surveilled body, the fusion of flesh with technology and the possibilities for technology to enhance perceptions of the body are addressed in the work, rather than the medical patient experience.

ORLAN recounts in her voiceover to the documentary video Omnipresence (1993), that in the 1970s, preceding her most well-known surgical performances of the 1990s, she intervened in her own medical emergency.

I had to have an emergency operation. It was a sick body that suddenly manifested

the need. I decided to capitalize on this new adventure by turning the situation

over, by considering life as a retrievable aesthetic phenomenon. I put photos and

44 videos in the operating cell and the resulting videos and photos were shown as if it

was a pre-programmed performance.86

The nine surgical-operation-performances of ORLAN from 1990–199387 included the full cooperation of plastic surgeons and anaesthetists in order for ORLAN to undertake the cosmetic work on her face, but also to ensure that she was pain-free, conscious and able to speak throughout her experience—performing whilst under the knife. Documentation of the performances, particularly the 7th Successful Surgery known as Ominpresence (included in

The Patient exhibition), shows the invasive surgical procedures being undertaken in a fairly chaotic environment surrounded by camera-operators and photographers, as well as sign- language interpreters and curators, with live satellite feeds connecting the artist to commentators elsewhere in the world.88 In 1993, Australian artist Stelarc performed Stomach

Sculpture, which involved the use of a kinetic object attached to an endoscope that was pushed down into, and activated inside his stomach. As Stelarc describes:

The performance occurred in a private clinic 5 minutes from a hospital, in case the

stomach was accidentally punctured. The only people in attendance were my

assistants and a photographer. The endoscopist, preferred to remain anonymous.

The sculpture was exhibited as an object in-itself with the accompanying internal

video at the NGV, Melbourne 1993.89

86 ORLAN, Omnipresence, 1993, https://vimeo.com/66967753, (accessed 31 May 2017). 87 ORLAN, ORLAN, http://www.orlan.eu (accessed 1 June 2017). 88 N. Czegledy and A. P.Czegledy, ‘Transcribing the Body’, in Archée: revue d'art en ligne : arts médiatiques & cyberculture, http://archee.qc.ca/ar.php?page=article§ion=texte3¬e=ok&no=377&surligne=oui&mot=, (accessed 11 June 2018). 89 Stelarc, ‘Stomach Sculpture’, Stelarc, 1993, http://stelarc.org, (accessed 1 June 2017).

45 Stelarc’s practice has since included numerous medical and robotic interventions on or into his body including the implantation of a human ear scaffold on his left arm in 2006, along with a microphone in a second surgery (which was later removed due to infection).90 His collaborative work with Nina Sellars, Blender, used their combined biological materials collected from liposuction surgeries installed in a human-scaled blender and hermetically- sealed container.91

For British artist, Marc Quinn, five litres of his own blood used to create his self-portrait sculpture, Self (1991), comprised the total amount of blood in a human body and was therefore “drawn off at safe intervals so as to literally not die for his art.”92 Quinn describes his arrangement with a doctor in the documentary, Marc Quinn and the Mutability of the

Human Body (2016):

I found a doctor. I explained the idea to them, and they were willing to take the

blood from me. So I went every six weeks, which was just over a year. And then

when I had all the blood, I defrosted it all, poured it into the mould of the head,

put it in a freezer.93

British artist Mona Hatoum’s seminal, Turner Prize-winning video installation from 1994,

Corps étranger (foreign body), utilised the video from colonoscopies and endoscopies performed specifically for the work to render a mediatised, inside-out perspective of her

90 Stelarc, ‘Ear on Arm: Engineering Internet Organ’, Stelarc, 2006, http://stelarc.org/?catID=20242, (accessed 11 June 2018). 91 Stelarc and N. Sellars, ‘Blender’, Stelarc, 2005, http://stelarc.org/?catID=20245, (accessed 11 June 2018). 92 S-A. Van Der Zijpp, ‘Mind over Matter’, in Marc Quinn: Recent Werk, Recent Sculpture (2006), catalogue for the exhibition at Groniger Museum, The Netherlands, p.13. 93 M. Quinn, Marc Quinn and the Mutability of the Human Body (2016) Bloomberg, Brilliant Ideas https://www.youtube.com/watch?v=DdRfD7Urd6Y, (accessed 1 June 2017).

46 body.94 The work presents the quite literal medical gaze—in the hands of the artist—as a

“personal reacquisition”95 and an invasion of privacy. The installation of the work in a cylindrical object with two entrances, situates the exhibition visitor inside the projection of

Hatoum’s body and the circuit of the camera through it.

All of these projects were realised through elective procedures whereby artists made a choice to engage with doctors and specialists within the health context, and to become patients, rather than through the prior experience of chronic illness or hospitalisation. Their works speak to the intervention of medical technologies on the body, as well as the connection of the body to machines and lively biomedical apparatus, which I address in detail in Chapter 4.

I view the medical interventions in these works as precursors to the recent practice of Guy

Ben-Ary, whose work cellF takes an elective surgical procedure as the first stage of a major

Biomedical Art project where the biomedical researchers involved are institutionally supported and credited as full collaborators.

Patient Knowledge and Communities

Along with artists-as-patients, this review includes artistic projects that actively engage with medical patients and patient communities as creative participants. These projects take a number of different forms, from artists using an embedded, documentary approach to practice

94 M. MacDonald, ‘Arts: The Inside Story’, The Independent, 27 August 1995, https://www.independent.co.uk/arts-entertainment/arts-the-inside-story-1598223.html, (accessed 12 June 2018). In the article, based on an interview with the artist, the author writes the following of the medical procedure that Hatoum used to create the work. “The Pompidou curator enthusiastically found her a doctor, and she sallied in high delight to the operating theatre. Most people are revolted by the idea of sticking cameras up their orifices, but Hatoum enjoyed the experience enormously, asking the doctor to go deeper and repeat the techniques when the pictures turned out wrong.” 95 N. Czegledy and A. P.Czegledy, ‘Transcribing the Body’, in Archée: revue d'art en ligne : arts médiatiques & cyberculture, http://archee.qc.ca/ar.php?page=article§ion=texte3¬e=ok&no=377&surligne=oui&mot=, (accessed 11 June 2018).

47 by situating themselves within existing hospital wards or treatment centres, to others who call for participants with lived experience through institutional collaboration. Some of these projects adapt community arts and theatre models to include the participation of non-artists and non-performers, and others use formal research processes such as interviews to capture information from patient subjects.

Two projects that were early influences on my curatorial project development for The Patient were the Hybrid Bodies (2007–2014) research project based at Concordia University in

Montreal, Quebec, Canada, and Transplant (2007) by Tim Wainwright and John Wynne which was an outcome of a year-long artists’ residency at Harefield Hospital in London, UK.

Transplant (2007) was included in The Patient exhibition. In both cases these projects were focused on the subject of the heart transplant and the transplant patient. Hybrid Bodies was an artistic program that was commissioned to interpret data from an interdisciplinary academic study called ‘The Process of Incorporating a Transplanted Heart’ (PITH), which began in

2002.96 Artists, Ingrid Bachmann (CAN), Andrew Carnie (UK), Catherine Richards (CAN), and Alexa Wright (UK) were granted ethics access to the video interview materials with transplant patients, produced by the PITH research team. In the case of Wainwright and

Wynne, the artists were commissioned by Harefield Hospital to embed themselves within the institution for twelve months, and use the tools of their practices, photography (Wainwright) and sound (Wynne), to capture the environments and inhabitants of the wards.

96 R. Heather, Hybrid Bodies: Rethinking Heart Transplantation, exhibition catalogue, Montreal, Quebec, Concordia University, Faculty of Fine Arts, 2016, p. 4. The PITH project was “instigated by Cardiologist Dr. Heather Ross, philosopher Dr. Magrit Shildrik and sociologist Dr. Patricia McKeever, and included transplant psychiatrist Dr. Susan Abbey and health researcher Dr. Jennifer Poole. The artists collaborated with the PITH research team based at Toronto General Hospital University Health Network.”

Figure 2: Tim Wainwright and John Wynne, Transplant, 2007. Photo: Tim Wainwright.

In 2011 I commissioned the work, The Body is a Big Place by Helen Pynor and Peta Clancy for Performance Space. The project, which dealt with the subject of human organ transplantation, included a period of performance development with members of the transplant swim team of Victoria. This facet of the work resulted in a large-scale video projection of people occupying an underwater waiting room, returning to the surface to take air and then returning to their seats. Pynor and Clancy brought this social practice into conversation with the visceral work of the biological lab by performing heart perfusions on recently harvested pig hearts in the exhibition space. Perfusion describes the act of pumping

49 fluid through an organ.97 In the case of this work, the artists engaged with a scientist to stimulate the heart through an electrical impulse, which caused the heart to pump fluid through its chambers autonomously. My case study of Helen Pynor’s work for The Patient in

Chapter 4.3 engages with the artist’s continued deployment of both social and biological processes in her work, and the connection of the human to the animal in the medical context.

Figure 3: Peta Clancy and Helen Pynor: The Body is a Big Place, 2011, performance documentation, Performance Space. Photo: Peta Clancy.

Artists engaging with communities have also extended research directly into medical care contexts to work with patients. The Wellcome Trust supported photomedia project Life

Before Death (2008) by journalist, Beate Lakotta and photographer, Walter Schels, engaged with palliative care patients in hospices in Hamburg and Berlin, creating images of them and

97 Medical Dictionary, ‘perfusion’, Merriam-Webster Dictionary Online, https://www.merriam- webster.com/medical/perfusion, (accessed 26 July 2018).

50 undertaking interviews in the days before death, with a second photograph taken after death comprising a diptych.98 Working in a similar way to Wainwright and Wynne, the artists obtained the consent and cooperation of patients towards their representation. A project that began at a similar time to my research, Harmonic Oscillator (2014–ongoing) by Australian artist, Vic McEwan in collaboration with Clive Parkinson (UK), has an array of outcomes extending from an artist’s residency at Alder Hay Children’s Hospital in Liverpool, UK.

Initially focused on the “negative effects of noise levels”99 experienced by recovering patients in the hospital environment, McEwan and Parkinson’s project includes a collaboration with a young patient, compositions, a radio documentary, a book and an exhibition.100

Brian Lobel, an American artist and academic working in the UK, straddles both the

“embodied pathography” of storytelling about cancer through his performing body, as well as undertaking community-based practice in art, theatre and health. His most well-known work is BALL & Other Funny Stories About Cancer (2003-ongoing) which details his own experience with testicular cancer at a young age. Lobel creates “space for alternative and truthful narratives around illness that promote reflection on how cancer is discussed, framed and read by audiences”101 with his performances often utilising the positivity of health messaging, and contrasting these against real experiences.

98 J. Moorehead, ‘This is the end’, The Guardian, 1 April 2008, https://www.theguardian.com/society/2008/apr/01/society.photography, (accessed 12 June 2018). 99 V. McEwan, ‘The Harmonic Oscillator’, Vic McEwan artist website, http://www.vicmcewan.com/current- projects-testing, (accessed 11 June 2018). 100 I previously published a short account of this work in the ‘Anxiety’ issue of Artlink in 2017. B. Dean, ‘The art of dis-ease’, Artlink, vol. 37, no. 3, 2017, https://www.artlink.com.au/articles/4616/the-artof- dis-ease/, (accessed 28 August 2018). 101 B. Lobel, ‘Fun With Cancer Patients: The Affect of Cancer’, in Mermikides, A. and Bouchard, G. (eds.), Performance and the Medical Body, London, United Kingdom, Bloomsbury Methuen Drama, 2016, p. 100.

51 Recently, Lobel co-authored the musical, A Pacifist’s Guide to the War on Cancer (2016) with Briony Kimmings and Kristy Housley for the performance company Complicité

Associates and the National Theatre, UK. This work engaged with cancer patients in its development, using verbatim text from interviews, as well as working with non-actor and cancer patient Lara Veitch as a key cast member.102 His project, Fun With Cancer Patients

(2013), invited young cancer patients to develop an “Action” to undertake with the artist, based upon what they want or need, to legitimise “alternative subjectivities in relation to cancer”,103 while presenting different narratives to the “cultural expectations of cancer survivorship”.104

Lobel’s performance text, Sex, Cancer and Cocktails (2014) was published for the first time in the catalogue for The Patient. This text, found on page 20 of the catalogue, in Appendix 1, details Lobel’s sexual history as an antidote to the medicalised concern for sex for testicular cancer patients, in terms of freezing sperm and preserving the potential for the patient to procreate. Lobel’s inclusion in the catalogue added a written perspective on illness and sexual pleasure, which were key themes in work by Bob Flanagan and Sheree Rose, and David

McDiarmid in the exhibition.

Artist Pedro Reyes’ Sanatorium (2011) is a project that uses some of the strategies for making participatory or community-informed works, but instead situates a pseudo medical treatment context in public space. First presented by The Solomon R. Guggenheim Museum

102 Complicité Associates, ‘A Pacifist’s Guide to the War on Cancer’, Productions, 2016, http://www.complicite.org/productions/APacifistsGuideToTheWarOnCancer, (accessed 30 July 2018). 103 C. Lambert, ‘The affective work of art: an ethnographic study of Brian Lobel’s Fun with Cancer Patients’, The Sociological Review, Vol 64, Issue 4, pp. 929–950. Year 2016? First Published July 11, 2016. 104 B. Lobel, ‘Fun With Cancer Patients: The Affect of Cancer’, in Mermikides, A., and Bouchard, G. (eds.), Performance and the Medical Body, London, United Kingdom, Bloomsbury Methuen Drama, 2016, pp. 101.

52 in New York in an offsite storefront in Brooklyn, and later at Documenta 13 and the

Whitechapel Gallery (2013), Sanatorium is a project that situated the visitor-as-patient for a range of pseudo-therapeutic offerings delivered by volunteers. Reyes’ project is significant for my research as it blended the aesthetics and practices of the laboratory and the clinic in a contemporary arts setting, where participants became both patients and guinea-pigs in therapy sessions “based on a collective, cooperative and decentered organization”, meaning that the environment was devoid of any official psychoanalytic or psychiatric expertise.105

The project relied “on a tradition of psychodrama indebted to sociologist Jacob Moreno, in which patients explore emotional issues and internal conflicts through dramatization, role- playing and audience participation.”106 Reyes’ offering to everyone—not only those self- identified or diagnosed with mental illness—to undertake therapeutic exercises in this work, gestures again to the notion of inclusivity and expanding public concerns for illness and health beyond the designated treatment contexts of the medical complex,107 which I also strove to provide a context for in The Patient.

Technologically Mediated Experiences

Over the past decade, with the development of immersive technologies including Augmented

Reality (AR) and Virtual Reality (VR), a number of artists have developed projects that

105 Y. Chateigne, ‘Introduction’, in Sanatorium Operations Manual, Geneva, Ridinghouse and Geneva University of Art, 2013, p. 4. 106 P.A. De Looz, ‘Pedro Reyes Brings Sanity to Brooklyn’, Art in America, 12 June 2011, https://www.artinamericamagazine.com/news-features/news/pedro-reyes-sanitorium-guggenheim/, (accessed 17 June 2018). 107 In an interview with Laurent Schmidt in the Sanatorium manual, Reyes is quoted as answering: “These days, therapy is a luxury for a lot of people, and every day there are more people in the world who need it but can’t afford it. There is also a stigma attached to it that makes many people think that those who go to therapy must be crazy. Yet today, especially in cities, there is a vast population who could benefit from it: unattended victims of depression, loneliness, neurosis, family violence, suicide, etc. That’s why I’m so interested in alternative structures…” P. Reyes, Sanatorium Operations Manual, Geneva, Ridinghouse and Geneva University of Art, 2013, p. 7.

53 situate exhibition visitors and participants in clinic-like consultations to convey, stimulate or transfer the impression of bodily experience. George Khut and collaborators including Caitlin

Newton-Broad108 presented The Heart Library Project (2008), which invited participants into a biofeedback simulation that transformed their heartbeat data into an immersive colour field that shifted hues with changes in breathing and heartrate. Following this project research and its various iterations, Khut has worked with collaborators including Dr Angie Morrow at the

Children’s Hospital at Westmead, Sydney to produce a related project, BrightHearts App

(2011–ongoing) which supports children in their anticipation of painful procedures. The app uses heartrate sensors to capture biological data, and the audio-visual feedback that can be similarly modified through a focus on breathing and lowering heartrate.109

Cat Jones’ work, Somatic Drifts (2015), like Khut’s early development of The Heart Library

Project, invites participants to lie down in a dark, consultation-like environment where they view a mirror image of themselves being interacted with by the artist. Jones uses “touch and illusion”110 which extends her one-on-one performance repertoire from neuroscience experiments into the dissociative possibilities of sensory input. The work creates the potential for participants to feel that their limbs have been transformed into tree branches and leaves.

Neuroscience experiments involved in altering sensory input in test subjects include the

“application of sensory manipulations to external objects or virtual representations of the self that are visually incongruent with the viewer’s own body and which are not part of the

108 G. Khut, ‘The Heart Library Project’, George Khut artist website, http://www.georgekhut.com/portfolio/the- heart-library-project/, (accessed 11 June 2018). Khut’s website acknowledges the following collaborators: Caitlin Newton-Broad, David Morris-Oliveros, Greg Turner and Jason McSweeney. 109 G. Khut, ‘BrightHearts Research’, George Khut artist website, http://www.georgekhut.com/portfolio/brighthearts-research/, (accessed 11 June 2018). 110 Cat Jones, Somatic Drifts, https://catjones.net/2016/08/11/somatic-drifts/, (accessed 19 February 2018).

54 existing body representation.” 111 Both of these projects, and their art and science collaborations, were either seeded or facilitated by the Australian Network for Art and

Technology (ANAT), based in Adelaide. For the past twenty-five years, ANAT has been supporting the independent research of Australian artists in the interdisciplinary realms of science and technology.112 The project Seeing is Believing (2016) by Eugenie Lee, which was commissioned for The Patient, was supported at an early stage through ANAT and their

Synapse Residency Program, which enabled Lee to continue the development of her neuroscience work with researchers at Body in Mind at the University of South Australia.113

Her project, like the work of Khut and Jones, utilises neuroscience research processes in order to address the experience of chronic pain. I present this project as a case study in

Chapter 5.5.

2.3 Exhibitions, Galleries and Museums

Contemporary Art Projects

There are numerous curators and directors whose projects have influenced my development of The Patient. In this section, I make reference to exhibitions, performances and festivals that directly connect to my CPBR in their selection of artists and works, or indirectly through the curatorial process, exhibition design and intentions for public engagement. Ted Gott’s curated exhibition, Don’t Leave Me This Way: Art in the Age of AIDS (1994) for the National

Gallery of Australia represents a significant moment in Australian art history, where a conservative, collection-based, national institution engaged with the practices of international

111 N. Ratcliffe and R. Newport, ‘The Effect of Visual, Spatial and Temporal Manipulations on Embodiment and Action’, Frontiers in Human Neuroscience, vol. 11, 2017, p. 227, https://www.frontiersin.org/article/10.3389/fnhum.2017.00227, (accessed 13 June 2018). 112 Australian Network of Art and Technology, What We Do, http://www.anat.org.au/about/, (accessed 30 July 2018). 113 Australian Network of Art and Technology, ‘Eugenie Lee Blog’, 2015 Synapse Residency Program, http://lee2015.blog.anat.org.au/, (accessed 30 July 2018).

55 and local artists responding to the HIV and AIDS epidemics. Gott’s project included a range of contemporary art forms including video, performance, and forms of protest. Works by

ACT UP, F.A.G.S. (Fucking Angry Gays) and the Australian Memorial AIDS Quilt Project were presented alongside the works of Keith Haring, Robert Mapplethorpe, Andres Serrano, and Juan Davila.114 The possibility for art to be a driving force of cultural change, and for national cultural institutions to be places where important issues can be explored and where difficult conversations and celebrations of difference can take place, is exemplified by this project. Gott’s closing remark in his introduction to the publication for the exhibition,

“HIV/AIDS does affect everybody, everywhere—whether or not they wish to acknowledge this yet.”115 It is the idea that we are all affected and all implicated—whether or not we wish to acknowledge it—that I carry through to The Patient. Works by David McDiarmid and

Brenton Heath-Kerr that were originally curated in the NGA exhibition were included in The

Patient.

The mainstreaming of difference, and the idea of destabilising or questioning what constitutes a normal experience of life, a normal body and normal mind, were pivotal to the Niet

Normaal · Difference on Display (2009) project, led by curator Ine Gevers. This included an exhibition of work by over ninety artists and a significant publication including texts by

Donna Haraway and Petra Kuppers.116 The project takes a broad perspective on difference and its many representations and exclusions in society and culture, and includes several artists with self-identified illness, neurodiversity and disability in its curation.117 Through

114 T. Gott, Don’t Leave Me This Way: Art in the Age of AIDS, Canberra, ACT, National Gallery of Australia, 1994, pp. 231-243. 115 Ibid., p. viii. 116 I. Gevers, Difference on Display: Diversity in Art, Science and Society, exhibition catalogue, Amsterdam, The Netherlands, Beurs van Berlage, 2009. 117 The project included artists Emery Blackwell, Mat Fraser, Billy Golfus, Joseph Grigely, Daniel Johnston, and Donald Rodney.

56 Gevers’ selection of artworks and discourse, the project addresses the connection of human experience to bio-politics, animals and technologies which I also address in The Patient. She situates herself as both curator and activist, with projects that extend beyond the confines of the gallery, dedicated to addressing and advocating pluralism and diversity in society.118

Other contemporary curators in Australia have researched and presented exhibitions around themes that remain taboo—such as death, and the representation of the dead. Helen Ennis’ curatorial project for the National Portrait Gallery in Canberra titled Reveries: Photography and Mortality (2007), engaged with the theme of death and the dead and dying human subject.119 The project included photographers representing themselves during treatment for illness (in the case of Carol Jerrems), their loved ones both dead and dying, and includes photographic series where photographers were able to access intensive care units in hospitals, funeral parlours, palliative care homes, or follow forensic experts to the sites of deaths.

Ennis’ project takes a similar subject-oriented approach to the theme of death, as The Patient does to the theme of illness. And similarly, Reveries addresses a taboo subject, and does so in an unflinching way in relation to its explicit, touching, and poignant content. Death is an acknowledged aspect of The Patient exhibition through my inclusion of deceased artists, who died from the illness they lived with and depicted in their works. I showed twelve images out of the seventeen originally selected by Ennis for Reveries in The Patient. I united these works with excerpts from Jerrems’ diary with permission of her estate, and to bring the distancing techniques of her photography into juxtaposition with the closeness of her personal reflections.

118 I. Gevers, ‘Activist’, Ine Gevers, http://inegevers.net/site/?s=websites, (accessed 16 June 2018). 119 H. Ennis, Reveries: Photography and Mortality, Canberra, ACT, The National Portrait Gallery, 2007.

57 Science Museums and Galleries

In the course of on-the-ground research with artists and their work in different locations between 2014 and 2016, I visited museums of science and technology, anatomy, pathology, and hygiene to consider medical museum perspectives on the patient body, and the work of these institutions and their curators with contemporary artists. These included the Hunterian

Museum in London, the Museum of Anatomy in Glasgow, the Museum of Hygiene in

Dresden, the Gordon Museum of Pathology at King’s College in London, The Old Operating

Theatre Museum and Herb Garret in London, the Museum of Human Disease in Sydney, and the Museum of Applied Arts and Sciences’ medical collection in Sydney. The Wellcome

Collection in London is perhaps the most well-known medical library and exhibition context, drawing from Henry Wellcome’s collection of medical objects and art dealing with medicine and disease. Since 2007, the collection has presented free exhibitions and resources to

“challenge how we all think and feel about health.”120 The collection has presented exhibitions by solo artists as well as thematic group exhibitions devised around Wellcome’s collection and including responsive new commissions by contemporary artists. Helen Pynor’s photographic work, Headache (2008)121 was included in Marius Kwint’s exhibition Brains:

The Mind as Matter (2013) which brought together human biological specimens, historical research material, photographic documents of anomalies and operations, medical apparatus, and contemporary art.122 The work of photographer, Corinne Day, who created a photographic journal of her treatment for a brain tumour, was also part of the exhibition.

Stemming predominantly from the collection, the Wellcome’s curated projects often begin with a medically objectified body part, such as the brain, heart or teeth and expand into the

120 Wellcome Collection, ‘About Wellcome Collection’, Wellcome Collection, https://wellcomecollection.org/pages/Wuw2MSIAACtd3Stq, (accessed 17 June 2018). 121 This work was subsequently purchased by the Wellcome Collection and hangs in its Reading Room. 122 M. Kwint and R. Wingate, Brains: The Mind as Matter, London, Wellcome Collection, 2012.

58 histories of its representation, its anatomical renderings, its medical artefacts and historical treatments, how it is culturally inscribed, and contemporary artworks or commissions that engage with it as subject.

The Science Gallery International, at Trinity College in Dublin, and its expansions to multiple international cities including London and Melbourne, presents contemporary exhibitions with themes that include biomedical subjects, approached from a range of artistic perspectives. The Science Gallery, London’s exhibition Blood: Life Uncut (2017) included the work The Body is a Big Place (2011) by Peta Clancy and Helen Pynor, which I originally commissioned for Performance Space in Sydney. At the end of 2018, Science Gallery

London will also be presenting Circles of Fire – Variations (2016) by John A. Douglas as part of its exhibition Spare Parts, originally commissioned for The Patient. Science Gallery

International curates its exhibition programs through the input of panels of arts and science experts, responding to expressions of interest from artists around an exhibition theme. This method of selection has enabled the reproduction and reiteration of exhibitions between their internationally-based institutions.

2.4 Biomedical Art as an Emerging Field

Bringing together and analysing the different lineages of Biomedical Art has been fundamental to my comprehension of this emerging field of practice. The varied nature of these contemporary art histories, and the different forms of practice they have produced brings a social and political foundation to the technical and practical characteristics I have observed in Biomedical Art. While all four of my case study artists engage in laboratory- based research for the development of new work, their practices are informed by other

59 tendencies and currencies in contemporary art, including performance, live art, and social and participatory practice, which this chapter has illuminated. My CPBR and the exhibition The

Patient, acknowledges and draws these rich lineages together for public presentation and discourse.

In the introduction to this chapter, I outlined some of the basic characteristics of Biomedical

Art that I perceived at the beginning of my research. They included interdisciplinary collaboration, engagement with scientists and researchers, connection to health and medicine and focus on the human body. What this review of discourse and practice has revealed is that beyond these technical and practical concerns, the social and political histories of Biomedical

Art are enmeshed in feminism and activist art practices, they engage with taboo or underrepresented elements of human experience, they span the care of live materials as well as care for patients, they situate lived experience as a critical element of practice.

There is a tendency for interdisciplinary art and new technological forms of art practice to be siloed from art history in their presentation contexts (which has as much to do with institutional conservatism in contemporary art as it does with artists finding innovative ways to present their work to audiences). For this CPBR project, it was important for me in presenting Biomedical Art, that I contextualise it historically and contemporarily. I did not want to present Biomedical Art as an isolated, emerging field with only positive manifestations of productive collaboration between art and medicine. In this way, I have attended to its other narratives, which include resistance, activism, the work of communities, and the discrete engagement of health workers outside the authorised boundaries of their practices.

60 As I will show across the next three chapters, artwork that I am identifying as Biomedical

Art, takes influence from these varied lineages. In the work of John A. Douglas, one can perceive similarities in the performance work of Bob Flanagan and Sheree Rose, Ron Athey, and Martin O’Brien, particularly in the artist’s sustained mode of endurance in performance.

Guy Ben-Ary’s recent projects utilising a surgical biopsy from his own arm, reflects elements of the surgical performances of ORLAN, and the use of medical apparatus and aesthetics by

Stelarc and by Mona Hatoum. Eugenie Lee’s work with neuroscientists shares similarities with other recent practice by George Khut and Cat Jones engaging with brain plasticity and mindfulness. Helen Pynor’s work brings the microscopic experiments of the laboratory, using protocols similar to the work of the Tissue Culture and Art Project, into conversation with non-artists and former patients with lived experience.

In undertaking this historical, theoretical, and contextual research, I have sought to position

The Patient exhibition as a complex and lively site for the confluence of different approaches to artistic practice, divergent relationships to the health sector and discursive discourse on human experience, which introduces the emerging field of Biomedical Art. In the next three chapters, I consider how my attentive curatorial methodology engages with Biomedical Art and the medical subject in art through my work with artists, lively materials, and audiences.

61 3. Care and the Artist

The medical patient is described as such through the operations of the healthcare system. In this chapter, I focus on the situations and actions of artists included in the exhibition The

Patient: The Medical Subject in Contemporary Art, in both institutional and social contexts for care. I examine how artists and their projects speak to the medical contexts in which they are implicated, and how they address the broader medical and social constructions of illness beyond the walls of the hospital or clinic. In particular, I address the following research question:

How does curating Biomedical Art and art work engaging with the artist-as- patient and the medical patient subject, expand the concept and practice of care in curating?

Within the networks of care that artists-as-patients traverse, I examine how artists, their works and their legacies are cared-for in the social and institutional systems of contemporary art. Through this section, I analyse how care in my curatorial practice intersects with institutional and other forms of care, and how this is mobilised in the selection and preparation of work for the exhibition. From the specificities of curatorial care that I identify in my introduction, in this chapter, I focus on situational and material care in my response to working with artists, their agents and their archives. In particular I address longitudinal care with my case study of artist, John A. Douglas through the development of his work for the exhibition, and the emotional and reciprocal care that exists in our relationship. In this case

62 study, I also introduce the intersection of the artist-as-patient with the processes of Bioart, lively materialities, and the engagement of scientific methods to both research and aestheticise lived medical experiences.

3.1 The Medical Gaze and the Power Differential

In The Birth of the Clinic: An Archaeology of Medical Perception (1963), Michel Foucault introduces the concept of the ‘medical gaze’, and charts the development of this concept over time, and through the specificity—including the politics—of the social contexts of modern medicine.123 Foucault represents a “historical condition” of medicine, which by the early nineteenth century had only just broken away from the perception of disease through the

“metaphysic of evil.”124 He writes:

It is as if for the first time for thousands of years, doctors, free at last of theories

and chimeras, agreed to approach the object of their experience with the purity

of an unprejudiced gaze.125

While only defined through empirical observation in recent history, this gaze was also,

no longer the gaze of any observer, but that of a doctor supported and justified

by an institution, that of a doctor endowed with the power of decision and

intervention … it was a gaze that was not content to observe what was self-

123 G. Gutting (ed.), ‘Introduction’, in The Cambridge Companion to Foucault, Cambridge University Press, 1994, p. 7. 124 M. Foucault, The Birth of the Clinic: An Archaeology of Medical Perception, New York, NY, Vintage Books, 1994, p. 196. 125 Ibid., p. 295.

63 evident; it must make it possible to outline chances and risks; it was

calculating.126

The diagnostic gaze, while clearly focusing on patient health, establishes a doctor-patient

“power differential” in which patients are positioned as the vulnerable and less knowledgeable party.127 The scientific and technological progress made in medicine from the twentieth century to now, also has the dual potential to increase life expectancy in patients, while creating depersonalising healing experiences.128 It is within this power differential that the artists-as-patients I have curated in The Patient, have made work, presenting their bodies as bodies of knowledge rather than as compliant and helplessly objectified. This empowerment of patient perspectives is an important outcome of my CPBR, and which connects to other curatorial projects, such as those of Ina Gevers, that I have discussed in

Chapter 2, that seek to change what is considered normative in human experience by actively representing difference.

Presenting the Patient Perspective

The patient perspective in the history of health and medicine, is not something that has been well documented. As Deborah Lupton writes in Medicine as Culture (1994),

until recently, the experience of people affected by illness and disease rarely

received the attention of medical historians. The history of medicine tended

126 Ibid., p. 89. 127 D. Lupton, Medicine as Culture, 2nd edn., Los Angeles, CA, Sage Publications, 2003, p. 113. 128 P. Redding, ‘Science, medicine and illness: rediscovering the patient as a person’, in Komesaroff, P.A. (ed.), Troubled Bodies: Critical perspectives on postmodernism, ethics and the body, Durham, NC, Duke University Press, 1995, p. 87.

64 towards documenting the discoveries of the ‘great men’ of biomedical science in

the inexorable progression towards modernity.129

As an exhibition focusing on medical patient experience (from the perspective of artists-as-patients), The Patient covers a period of western art history in which medical sociology and medical anthropology have also sought the patient perspective.130 This convergence of disciplinary focus aligns with the general patterns of postmodernity, the concept of plurality and the deconstruction of singular, linear histories and narratives. Historically, this period aligns with emerging theories on the social construction of disability as well as the social and gendered construction of illness.131

In terms of access to medical knowledge by the lay person, we live in a moment where disciplinary boundaries are increasingly porous. But the advent of the internet and its common use for instruction on self-care and self-diagnosis, has not necessarily corresponded to a wider cultural analysis of medicine from the patient perspective. There remains a compartmentalisation of medical knowledge and divisions between the ill and the “normal” and able, that perpetuate taboos and undermine marginalised perspectives, even within a moment of unfettered access to information.

When I began this practice-based research in 2013, it was clear that in terms of a significant survey of contemporary art practice, the exhibition would be historic in the Australian

129 D. Lupton, Medicine as Culture, 2nd edn., London, Sage Publications, 2003, p. 85. 130 Ibid., p. 88. 131 M. Oliver, ‘Defining Impairment and Dis-ability: Issues at Stake’, in Barnes, C. and Mercer, G. (eds.), Exploring the Divide, Leeds, The Disability Press, 1996, pp. 29–54.

65 context.132 From the perspective of my own field of interdisciplinary curatorial practice, there have been very few examples, even internationally, of projects engaging with Biomedical Art or medical patient subjectivity, with the exception of the artists’ own solo exhibitions or presentations. Examples of medically-themed survey shows are addressed in Chapter 2.3, and they include commissions for the science and medical museum context, showing a dominance of exhibitions with educational or science-communication remits engaging visitors to “explore” specific bodily organs and fluids, or focus on a particular area of medical study.133 Curiosity, discovery and exploration are terms that are often deployed in marketing exhibitions intersecting between medicine and art.134 But this language, although inviting, tends to reinforce traditional modes of objectification, and the power relationships between object, subject and viewer, patient and doctor. There is no doubt that these exhibitions successfully raise public awareness of science, technology and medicine and it is not my intention to negatively criticise them, but to draw a distinction around science museum modes of exhibition-making, and the particular curatorial focus of The Patient.

The intersection of art and health for wellbeing is presently growing in Australia. There is an is an increasing amount of health and cultural policy in development that is centred on the fusion of art with health for patient and medical staff wellbeing outcomes.135 Programs for

132 I have previously discussed curatorial projects by Ted Gott (1994) and Helen Ennis (2007) that have been influential to this project, but I haven’t encountered a project in the last twenty years that engages with this subject area explicitly. 133 Here I am thinking about exhibitions including Blood: Attract and Repel (2017) by the Science Gallery Melbourne, and Brains: The Mind as Matter (2012) by the Wellcome Collection. 134 For example, this is the final marketing line for the Science Gallery’s exhibition, Blood: Attract and Repel: “Explore blood with all your senses and discover the wonder of this important body fluid.” Science Gallery, Blood: Attract and Repel, https://melbourne.sciencegallery.com/blood-attract-and-repel, (accessed 5 July 2018). 135 The NSW Health and the Arts Framework was announced as a state government initiative in 2016, tasked with “Improving the health of the community through integrating The Arts into the design and delivery of health services and public health messaging.” Since this time, a range of advisory groups for art and health in local health districts have been established.

66 patients that place contemporary art and artists in hospital, aged-care, and therapeutic contexts are multiplying and diversifying—but rarely are these programs developed by artists who are also patients, and nor do they ordinarily engage with publics outside the health context, or arts audiences.136 There are, of course, exceptions within this generalisation, including projects already mentioned in Chapter 2.2, including Brighthearts (2016) and The

Heart Library Project (2007) by George Khut and collaborators, and Fun With Cancer

Patients (2013) by Brian Lobel. Art programs as therapy in medical, mental health institutions as well as the prison system, have significant histories across the mid to late 20th

Century137, but similarly, these programs are unlikely to be facilitated by artists with lived experience, and art is effectively incorporated into conventional treatment programs.

Foucauldian power dynamics insist that there is no “outside” the system. “Where there is power, there is resistance, and yet, or rather consequently, this resistance is never in a position of exteriority in relation to power.”138 Similarly, my curatorial rationale for The

Patient suggests that there is no outside of the medical-health complex and there is no outside of the entropy of the human immune system. Even if we are well at the moment, we will all be “patient”. Making sense of illness, self-care, and identity within a system of power, should

NSW Government, NSW Arts and Health Framework, 2016, pp. 1–14, http://www.health.nsw.gov.au/arts/Documents/nsw-health-and-the-arts-framework-report.pdf, (accessed 14 July 2018). 136 This is not levelled as a criticism of these practices, which ultimately aim to engage as many people as possible in programs that place wellbeing and therapy as a foremost concern. The 2017 program of the Australian Centre for Arts and Health conference had artists with lived experience representing around 8% of conference presenters. Australian Centre for Arts and Health, The Art of Good Health and Wellbeing, 30 October 2017, https://www.artsandhealth.org.au/wp- content/uploads/2017/09/ACAH_2017_ArtsHealthConference_Schedule-24.10.17.pdf, (accessed 14 July 2018). 137 S. Hogan, ‘The Intellectual Precursors of Art Therapy in Britain’, in Healing Arts: The History of Art Therapy, London, Jessica Kingsley Publications, 2001, p. 25. 138 M. Foucault, The History of Sexuality, Volume 1, New York, NY, Random House, 1990; 1978, p. 94.

67 be concerns for everyone. As Susan Sontag writes in her essay on the use of metaphor as a tool for judging those with illness:

Illness is the night-side of life, a more onerous citizenship. Everyone who is born

holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.

Although we all prefer to use only the good passport, sooner or later each of us is

obliged, at least for a spell, to identify ourselves as citizens of that other place.139

The Patient identifies all people as citizens of “that other place” through my selection of artists and works, exhibition design and public programs, which invite visitors into contexts for contemplating their own existence.

My curatorial focus on artists-as-patients and artists whose practices engage with patients as creative subjects and ‘knowing’ bodies, closes the distance of perception between wellness and illness, from person to person. From artist to viewer, audience and participant. The idea of bodies as ‘knowing’ and as the sites of different kinds of knowledge, flows though feminist theory on the gendered body, including Elizabeth Groz’s Volatile Bodies (1994),140 and in Haraway’s idea of situated knowledge, which binds the knowing body and subject to their contextual specificities.141 The artists-as-patients in The Patient aestheticise their knowing, patient bodies and medical experiences, and project these into the “kingdom of the well”. In this sense, the exhibition becomes a nexus for joining the situated knowledges of artist and viewer in careful configurations, through the selection of work, and the design and

139 S. Sontag, Illness as Metaphor and AIDS and its Metaphors, New York, NY, Doubleday, 1990, p. 3. 140 E. Grosz, Volatile Bodies: Towards a Corporeal Feminism, Bloomington, Indiana University Press, 1994, p. 18. 141 D. Haraway, ‘Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective’, Feminist Studies, Vol. 14, No. 3. Autumn, 1988, p. 581.

68 implementation of the exhibition space and its public programs. I discuss my approach to design and the outcomes of this care in relation to visitors in Chapter 5.

3.2 Resistance, the Ill Artist and the Estate

Resistance and the Ill Artist

The oldest works in the exhibition, by Australian photographer Carol Jerrems, are 8x10 inch silver gelatine photographs that represent herself and other patients in a hospital, as well as doctors, specialists, and nursing staff. Aside from her self-portraits reflected in the mirror of a hospital bathroom, the images are candid and un-posed, where subjects are photographed behind glass, glimpsed through doorways and in the actions of work, rest or recovery.

Jerrems’ compositions situate her subjects within or behind frames created by the hospital architecture. Works from this, the Hobart Hospital Series (1979), are described by curator and writer, Helen Ennis thus:

The most striking feature of the photographs from this time is their sense of

detachment … Her subjects may be aware of her but only occasionally do they

directly acknowledge her presence. When it does occur, as in one of Jerrems’

most evocative images of a young nurse busily going about her duties, it functions

as an act of exclusion.142

This series of photographs, which was the last that the artist ever produced, was printed posthumously by her friend Roger Scott, and has subsequently been curated into a number of

142 H. Ennis, Reveries: Photography and Mortality, Canberra, ACT, The National Portrait Gallery, 2007, pp. 50– 51.

69 exhibitions without any instruction on presentation from the artist.143 In The Patient, twelve photographs—a number of which had previously appeared in different curatorial projects by curators Helen Ennis and Natalie King—were accompanied by printed quotes taken from her hospital diary, made available by Jerrems’ estate, and which I discuss later in this chapter.

Quotes from this journal, also titled The Patient, alongside the photographs, created an incomplete but poignant and atmospheric sense of hospital life as frustrating, detached and lonely. Jerrems’ work, stemming from her lengthy confinement in Hobart Hospital in 1979, mirrors a kind of collective dread of hospitals and the medical complex. They also present the artist’s agency, her defiance and her critique of the institutions of power inherent in the relationship between patient and doctor. In the diary she wrote, “These doctors prefer to tell you how you are, rather than ask you how you feel.”144

A photographer working in the wake of the sexual revolution in the nineteen seventies in

Australia, Jerrems was adroit at disrupting photographic conventions, and engaged with subjects and contexts that would have been considered risqué or countercultural at the time of their making. Jerrems’ renown for taking pictures of herself, reflected in the mirrors of hotels or bedrooms she shared with lovers, finds a lonely echo in Hobart Hospital Series. In these works, the images of her reflection reveal her to be by herself in a hospital bathroom, with her illness occupying the space of a secondary subject, and even usurping her own subjectivity with several images only including the artist’s torso, enlarged by illness.145

143 H. Ennis, ‘Ward 3E’, in King, N. (ed.), Up Close: Carol Jerrems with Larry Clark, Nan Goldin and William Yang, Melbourne, VIC, Schwartz City, p. 150. Year? 144 C. Jerrems, The Patient, artist’s journal, 1979, p.3. Quotation used in the exhibition, The Patient with the permission of Linda Sly, acting on behalf of the estate of Carol Jerrems. 145 The title of the ABC TV documentary Girl in a Mirror: A Portrait of Carol Jerrems (2005) directed by Kathy Drayton, makes reference to Jerrems’ hallmark use of the mirror for self-portraiture in her work.

70 As an artist whose output across documentary, socially engaged, political and therapeutic forms of photography was almost matched by her commitment to publishing and discussing her practice, Jo Spence left behind some incisive personal perspectives on her patient experience. Interviews reproduced in her books Putting Myself in the Picture (1986) and

Cultural Sniping (1995) detail not only the dehumanising and isolating process of submitting to, and then refusing traditional treatment for breast cancer, but also the silence and inability of the art community to connect with her work on illness.

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.’146

Spence cited the lack of social cohesion and community around cancer, being randomly distributed across all class and social divides, as a challenge in presenting work where there was no “vocabulary” developed to address or critique it.147 From her perspective, working in the 1990s in the United Kingdom, art was understood as a tool in therapeutic medical contexts, and photographic art as a means to represent “cripples or people in wheelchairs”, but work addressing illness and disability differently, by “inhabiting images” as she did, was only just emerging into the contemporary art context.148 Spence’s self-proclaimed role as a

146 J. Spence, “The Artist and Illness: Cultural burn-out/holistic health! (interview with Jan Zita Grover)”, in Cultural Sniping (1995), Routledge, London pp. 213–214. 147 Ibid., p. 214. 148 Ibid., p. 214.

71 “Cultural Sniper”149 drew the ill body into her aesthetic assaults on the erasure of the marginalised “female, working class, older” bodies from cultural discourse.150

Spence’s memory of this time, as articulated in conversation with Jan Zita Grover, also reveals a total lack of engagement on the part of gallerists or curators in the presentation of her work, which paints a picture of the artist as utterly isolated, even when surrounded by people. The figure of the curator is absent in relation to Spence’s account of her practice at this time. However, she identifies her preparedness to “help” others undergoing this experience as well as encouraging empathy among general viewers, and to my mind this was a gesture of care that—at the time—was found to have no subject to attend to, and no community.151

In the work of Jerrems and Spence, the objectification and distancing of the patient enacted by the medical gaze is addressed implicitly through the deliberate separation of doctor/patient experience and by explicitly drawing attention to the signs, instruments and demarcations of surgery and treatment on the patient body. The inclusion of these works in The Patient emphasised the empowerment of the patient voice and perspective, even within situations and institutional constructs that exert power and control over the patient body.

The Family Estate and the Ill Artist

My access to works by Jerrems and Spence was authorised by their respective family- maintained estates, and practically, through liaison with galleries. A large portion of Jerrems’

149 J. Spence, Cultural Sniping: The Art of Transgression, London, Routledge, 1995. 150 P. Kuppers, The Scar of Visibility: Medical Performances and Contemporary Art, Minneapolis, MA, University of Minnesota Press, 2007, p.78. 151 Ibid., p. 214.

72 collection is held by the Heide Museum in Melbourne, and the artist’s estate is managed by her sister-in-law, Linda Sly, who lives in New Zealand. I was most fortunate to meet Sly on a research trip to the Heide Museum, which enabled me to view the 8 x 10 inch photographs that had been printed from her Hobart Hospital negatives. These images had been processed due to the previous scholarship of curators, Helen Ennis152 and Natalie King, who had both shown works from the series for different exhibitions. King, with Heide Museum, has curated and published significant research on Jerrems. Up Close: Carol Jerrems with Larry Clark,

Nan Goldin and William Yang (2010) situated the artist’s work with her contemporaries in

Australia and the U.S., and it was through making contact with King that I was introduced to

Sly.

When Sly met with me in Melbourne in April, 2016, she brought with her the original copy of Jerrems’ hospital journal, also titled The Patient, as well as a photocopy that I was able to take home with me. My selection of twelve works from Heide’s collection were accompanied by sentences from this diary, extracted with Sly’s permission. I maintain a strong sense that this personal connection with Sly, and the methodology of situational care, of working with the material of the collection on-site and in conversation with the estate and the archive, is largely what enabled me to loan these works. This outcome supports my methodology of embodied, attentive curatorial practice through situational and material care.

152 Ennis and Bob Jenyns with the University of Tasmania, curated the exhibition Living in the 70s: Photographs by Carol Jerrems in 1990, and works from the Hobart Hospital Series (1979) were also included in her exhibition and publication Reveries: Photography and Mortality (2007), as I have previously mentioned.

73 Figure 4: Carol Jerrems, Hobart Hospital Series (1979). The Patient installation image, UNSW Galleries, 2016. Photo: Silversalt Photography. Photographs accompanied by text from Jerrems’ hospital journal.

In the case of Spence, I wasn’t able to travel to London at the right time to view the artist’s collection at Richard Saltoun Gallery, and relied on making requests over email. I received permission from Terry Dennett, the artist’s surviving partner, to show the work, and due to cost implications, I settled on reproducing only five photographs titled Narratives of Dis-ease

(1990). Spence had an unorthodox relationship to the contemporary art world, and her photographic exhibitions were often produced like magazine layouts or information boards rather than a crisp, polished photomedia hang. My enthusiasm to reproduce her material in this way was tempered by my inability to connect with the original source material, or to have in-person conversations that would have made such an endeavour achievable on limited resources. A key finding of my CPBR, and reflecting on these engagements with artists and their archives, is that person-to-person connection through situational care can manifest very different project outcomes.

3.3 Communities of Care and the Distributed Archive

The Artist-as-Patient in Communities of Care

In Jo Spence’s interview with Jan Zita Grover, she identified the community of activists working to reduce the stigma of HIV and AIDS positive patients, as already possessing voice and visibility due to the longer-term establishment of same-sex activism.153 Both of the activist artists represented in The Patient exhibition, David McDiarmid and Brenton Heath-

Kerr were key figures in the Gay community in Sydney before the subject of their practices shifted to the disease that was devastating their community.

The Patient includes a documentary film about Brenton Heath-Kerr directed by Paul Andrew called The Man in the Irony Mask (1998) which was made posthumously, and dedicated to the artist. Heath-Kerr, who died in 1995, was a performance artist and costume maker whose

‘works’ were staged in the underground dance clubs of the Gay community in Sydney in the late 1980s and early 1990s. Dressed in outfits that completely masked his face and body—in material from artificial wood laminate, to a camouflage frenzy of purple gingham fabric—

Heath-Kerr was a mysterious, tall and intangible presence even in those relatively liberated contexts. His work is contemporaneous with and reminiscent of the extravagant costume and identity-based work of Australian artist Leigh Bowery who died in 1994 of AIDS related illness.

While The Man in the Irony Mask reveals strong relationships to friends, Kerr’s network also extended to the National Gallery of Australia’s curator of contemporary art, Ted Gott, and to

153 J. Spence, ‘The Artist and Illness: Cultural burn-out/holistic health! (interview with Jan Zita Grover)’, in Cultural Sniping, London, Routledge, 1995, p. 214.

75 Glynis Jones, curator of the Powerhouse Museum, an institution which holds many of Heath-

Kerr’s costumes (though not any of the work he made as part of his HIV and AIDS activism).

As curator Ted Gott recounted in the documentary:

What appealed to me about Brenton’s work, is that it was neither performance

work, nor drag. It was neither costume nor parody. It wasn’t really anything much

at all. It was really something quite evanescent. And yet underneath it was this

incredible truth, this urgency and this immediacy. So it was absolutely nothing,

and everything at the same time.154

Heath-Kerr was also commissioned for the purposes of developing a safe sex message character called “Ken” by the Victorian AIDS Council. A representation of this work, as well as Homo-sapien (1994) and the latex body-suit and terminal patient performance, Self

Portrait in Latex (1995) were included in Don’t Leave Me This Way.155 Gott’s inclusion of different kinds of cultural material of the time, including the marketing material of health messaging, posters by activist organisations, the community craft of quilt-making as well has established forms of contemporary art, was something that I reflected in The Patient, in my collection and presentation of museum objects and other cultural ephemera relating to health and medicine.

It was work which moved through the realms of the gay party world in Sydney

and Melbourne, that spoke directly to that world, participated in it actively, and

was very instructive within the exhibition in terms of presenting both a safe sex

154 P. Andrew, The Man in the Irony Mask, 1998, https://vimeo.com/80592041, (accessed 25 July 2017). 155 Ibid.

76 message in one of the pieces, Ken the safe sex character, but also in the other

piece Homo-sapiens in presenting in a very immediate way, the ravages of HIV

on the human body.156

As detailed by Gott in the documentary, Kerr’s work operated across and between the club, the exhibition, government sanctioned health messaging, and through the support of numerous friends, collaborators and senior figures in the art world, and this support was reciprocated and returned in-kind. Gott’s curation of this subcultural and community-based artist into a major national exhibition with its international significance, presented a challenge to conventional exhibition-making in Australia and put an international health issue at the centre of mainstream arts discourse.157 My inclusion of two artists in The Patient who were presented by Gott in his exhibition, reaffirms that AIDS and HIV are still shrouded in stigma today,158 and that aesthetic practice challenging dominant perspectives on HIV remain pertinent to contemporary cultural discourse.

Like Heath-Kerr, David McDiarmid was interconnected within a strong community that already cared for its artists, and its creative cultural expression. As a fashion designer, printmaker and former director of the Sydney Gay and Lesbian Mardi Gras, McDiarmid was

156 Ibid. 157 An exhibition from 2014 by Michael Graf and Russell Walsh, Transmissions: archiving HIV/AIDS, Melbourne, 1979-2014, included original material from the NGA, and reflected upon the “enormous amount of cultural production” evident in the exhibition and its impacts on audiences. A. Stephens, ‘AIDS crisis revisited in new exhibition’, Sydney Morning Herald, 7 July 2014, https://www.smh.com.au/entertainment/aids-crisis-revisited-in-new-exhibition-20140708-zsz6k.html, (accessed 2 July 2018). 158 HIV activist groups are presently addressing stigma from the clinical perspective around undetectable viral loads in HIV patients. From the HIV medical research perspective, a person with HIV who has an undetectable viral load, has zero chance of transmitting the virus to another person. However, this knowledge still needs to be effectively communicated by clinicians to patients and the community. The Undetectable = Untransmittable campaign hashtag is #sciencenotstigma. Prevention Access Campaign, Consensus Statement, Undetectable = Untransmittable, https://www.preventionaccess.org/consensus, (accessed 28 July 2018).

77 already firmly entrenched within an activist community for the rights of Gay and Lesbian

Australians before he was diagnosed with AIDS in 1986.159 McDiarmid’s career and practice is already well-charted territory in Australian culture due to the continuing work of close friend, curator and historian Sally Gray, in presenting exhibitions and publications of the artist’s work. In the exhibition If This You See Remember Me commissioned by the National

Gallery of Victoria in 2014, Gray presented a survey and touring show of McDiarmid’s work which included the work on paper series, Rainbow Aphorisms (1994), nine of which were shown in The Patient. In discussing McDiarmid and the artistic community to which he belonged, Gray stated in an interview with David Hunt on JOY 94.9, a radio station in

Melbourne:

we were part of a group of people who shared an aesthetic. We were interested in

what some people call ‘kitsch’. We were interested in high-key colour. We were

interested in sensational visual effects. We were interested in Australiana, which

was extremely unfashionable. We were interested in a whole lot of visual things

that were really a minority taste. And so, from the beginning, I admired David’s

capacity to bring unusual things together. Things that don’t go, he brought

together. And he continued to do that for his whole career.160

The Rainbow Aphorisms (1994) series made by McDiarmid towards the end of his life continued in this vein, but removed from the vital and abundant materiality of his earlier practice, which ranged across textiles, paint and mixed-media sculptures and installations.

159 S. Gray, The Full Spectrum: David McDiarmid’s Rainbow Aphorisms, Ashfield, NSW, Project Sisu Publications, 2017, p. 29. 160 S. Gray, ‘David McDiarmid: When This You See Remember Me’, JOY Community Highlights, Presenter D. Hunt, Melbourne, VIC, JOY: Out, Loud Proud, 2014, http://joy.org.au/joycommunityhighlights/2014/05/david- mcdiarmid-when-this-you-see-remember-me/, (accessed 2 July 2018).

78 Confined to working from home or hospital, McDiarmid was limited in his access to tools and art-making resources. He designed Rainbow Aphorisms on a desktop publishing program and rendered them as vector-based files, so that they could be reproduced at any time, for any scale. The works were made just prior to a major commission for the now-defunct Australian

Perspecta biennial, held by the Art Gallery of NSW. A large capital-letter Q, reproduced from a work in the Rainbow Aphorisms series, was emblazoned on a rainbow-coloured flag, which stood at the entrance to the gallery—rebranding the conservative, institutional space as

Queer.161

In an illustrated essay made for a 1993 AIDS conference, which is available on McDiarmid’s estate’s Vimeo account, McDiarmid gives a frank account of his life as a gay man. In it he describes enjoying sex and art, contending with various communicable diseases as a consequence of being a “slut”, later taking an increasing list of medication as a treatment for his HIV positive status, and working with the diversity of the Gay and Lesbian community of

Sydney for Mardi Gras.162

In 1992, my most satisfying experience as a community artist was with the HIV

Living Group at ACON, a bunch of HIV men and women who wanted to be

fabulous—who doesn’t. It almost didn’t matter what we created, our public

coming out was inherently exhilarating.163

161 S. Gray, The Full Spectrum: David McDiarmid’s Rainbow Aphorisms, Ashfield, NSW, Project Sisu Publications, 2017, p. 7. 162 D. McDiarmid, A Short History of Facial Hair, Vimeo, https://vimeo.com/92814035, (accessed 2 July 2018). 163 Ibid.

79 In the last few years of his life, McDiarmid focused his practice on reaching audiences outside the limited frame of the contemporary art institution, and through the machinations of the “AIDS industry.”164 His designs were used on posters, t-shirts, leaflets, condom packaging and other health-message paraphernalia, and were used and consumed directly by the AIDS community and their supporters. McDiarmid’s work throughout this period of the late 1980s and early 1990s, across institutional and activist spaces, demonstrated a two-way- street for ‘care’, in which care flowed to the artist from the health context, as well as the Gay and Lesbian community, but was also returned with interest by the artist through the devotion of these years.

My priority as an artist has always been to record and celebrate our lives. Having

lived through an extraordinary time of redefinition and deconstruction of

identities, from camp to gay to queer; and seeing our lives and histories

marginalised every day, we all have a responsibility to speak out.165

In The Patient exhibition, McDiarmid’s prints from the The Rainbow Aphorisms Series, are among a few selected artworks that are non-representational and non-figurative. They do not represent the likeness of the artist himself, nor the artist-as-patient. The works also refuse the muted hospital tones of other works in the exhibition, that are adopted by other artists in the exhibition as a result of being made inside hospitals or through deliberate appropriation of this colour palette. Tellingly and unsurprisingly, McDiarmid described the medical process as “oppressive.”166 Instead, the nine prints blare from the wall both visually and textually, reasserting McDiarmid’s vibrant, queer and dissonant voice, as the works themselves

164 Ibid. 165 Ibid. 166 Ibid.

80 counteract the conciliatory language employed around the gravely ill through “linguistic twisting.”167 In The Patient, McDiarmid’s images disrupt the flow of figurative representations of the ill and the body in surgical or medical contexts as represented below in the installation at UNSW Galleries.

Figure 5: David McDiarmid, nine works from Rainbow Aphorisms, 1994. The Patient installation image, UNSW Galleries, 2016. Photo: Silversalt Photography.

The Distributed Archive

Not all artists who have passed-away have estates or remaining relatives taking care of their work. Here, I look at the work of an artist who is championed and remembered by a supportive community, and whose practice is distributed among some of its members.

Brenton Heath-Kerr passed away from an AIDS related illness in 1995 and his work is held in only two public collections that I could find. They are the Museum of Applied Arts and

Sciences, which has acquired only the costumes that predate the artist’s engagement with

HIV/AIDS activism, and the National Gallery of Australia, which collected a print of

Homosapien (1994) and the costume Self Portrait in Latex which Heath-Kerr wore to the

167 S. Gray, The Full Spectrum: David McDiarmid’s Rainbow Aphorisms, Ashfield, NSW, Project Sisu Publications, 2017, p. 13.

81 opening event of Don’t Leave Me This Way: Art in the Age of AIDS (1994) at the NGA.

However, the NGA loan policies were too strict for me to borrow work with less than a year’s notice. Without a surviving family member to track down, I contacted a range of

Heath-Kerr’s friends including Ted Gott, who now works for the National Gallery of Victoria and who assisted me with a couple of leads. Eventually I was able to track down photographer John Webber, who took staged photographs and photographic details of Heath-

Kerr in costume in the 90s. I also located Paul Andrew, a friend of Heath-Kerr, who made a posthumous documentary titled The Man in the Irony Mask (1996), about the artist which is held in the collection of the Australian Centre for the Moving Image (ACMI), and that I was able to loan. Engaging with the range of friends and supporters of Heath-Kerr and the fragments of archives of his work that they hold outside collections, made me reflect on the ways in which artists—their works and legacies—are retained and cared for after death, particularly when death is premature and sudden. In curating The Patient, my work brings attention to this artist’s work again and temporarily reunites some of the fragments of his distributed archive. There are elements of situational and material care involved in curating and reproducing this work for exhibition, in which ultimately, I add to public awareness of the artist’s life and practice.

Figure 6: Brenton Heath-Kerr, various works. The Patient installation image, UNSW Galleries, 2016. Photo: Silversalt Photographs.

In contrast to Heath-Kerr’s archive, David McDiarmid’s estate is managed by his friend, the curator, writer and academic, Sally Gray. Gray has catalogued McDiarmid’s practice, is the executor of his estate, and curated many projects of his work, including (as mentioned above) the significant retrospective David McDiarmid: When This You See Remember Me at the

National Gallery of Victoria (NGV) in 2014.168 I had been disappointed that this exhibition did not tour to Sydney (or anywhere) and was grateful for Gray’s support in loaning nine of his works from the Rainbow Aphorisms series. As a curator, part of Gray’s practice since

McDiarmid’s death has been committed to extending the life-cycle of the artist’s work, with the latest major commission being the installation of the Rainbow Aphorisms series in the

London Underground in 2017.169 Gray’s work, from my perspective, exemplifies an attentive

168 S. Gray, ‘About Sally Gray’, Sally Gray, http://sallygray.com.au/?page_id=22152, (accessed 2 July 2018). 169 S. Gray, ‘David McDiarmid’s Rainbow Aphorisms in the Public Realm’, Sally Gray, http://sallygray.com.au/?page_id=18626, (accessed 2 July 2018).

83 curatorial practice across the spectrum of kinds of care that I outline in my methodology. In addition to the nine works from McDiarmid’s series, Gray also contributed to the exhibition’s library with her publications Gifts from David McDiarmid (2014) and The Full Spectrum:

David McDiarmid’s Rainbow Aphorisms (2012). These contributions manifested as a result of our meeting face-to-face, and talking together about the project, demonstrating again the importance of situational care in my CPBR.

3.4 The Artist as Carer and the Life of the Archive

Artist as Carer and Surviving Collaborator

In detailing the relationship between two collaborating artists, and the care extending between them, I also want to acknowledge the care of the Queer community in Los Angeles for maintaining the archive of Bob Flanagan and Sheree Rose. While Flanagan and Rose were heterosexual under the terms of their own relationship, their practice as artists working through the fetish and BDSM (Bondage and Discipline, Dominance and Submission, Sadism and Masochism) communities in Los Angeles put their work and lives firmly in a Queer context, which overlapped with the Gay and Lesbian communities, events, celebrations and activism. Sheree Rose’s archive is held in the ONE National Gay and Lesbian Archives at the

University of Southern California in Los Angeles, due to her work with Flanagan, and her prolific photographic documentation of the Queer, Gay and Lesbian scenes in Los Angeles throughout the 1980s and 1990s.

At the same time, and reflecting the idea of bringing real life into the context of the gallery, as with Ted Gott’s Don’t Leave Me This Way: Art in the Age of AIDS (1994), Bob Flanagan and Sheree Rose collaborated on a project called Visiting Hours, which was initially presented by the Santa Monica Museum of Art (1993) and was subsequently restaged at the

84 New Museum in New York (1994) and the Boston Museum of Fine Arts (1995). The exhibition was arranged around a dualistic set of human experiences—pain and pleasure— delivered through the recreation of familiar medical spaces including a waiting room, and a to-scale recreation of a hospital bedroom, in which Flanagan—who had Cystic Fibrosis— would occupy the bed, clad in a hospital gown while visitors were able to sit and talk with him.170 The exhibition also included work that documented and evoked the sadomasochistic practices of Flanagan and Rose as well as childhood memory, represented through installations with children’s toys and Flanagan’s writing. In this quote from an interview with

Dominic Johnson, Rose details the nuances of the artists’ sexual and working relationship and the issue of consent within their performances:

Although I was the dominant partner, and Bob was the submissive, we always

negotiated what we would and would not do to each other, in private and in

performance. In Visiting Hours, for example, a key part involved me suspending

Bob by the ankles periodically throughout the duration of the exhibition. From the

perspective of the audience, it might have looked as though Bob was lying in the

hospital bed and he’d be mysteriously drawn up to the ceiling, like an object. In

fact, he would give a signal to a video camera, and I’d receive the signal and start

pulling him up. He was sick. I was controlling his movements, but there was give

and take. I wasn’t going to suspend him whenever I felt like it, or to surprise him

without his consent. We incorporated negotiation into everything we did.171

170 D. Johnson, ‘An Interview with Sheree Rose’, in The Art of Living, London, Palgrave Macmillan Publishers Limited, 2015, pp. 111–114. 171 D. Johnson, ‘An Interview with Sheree Rose’, in The Art of Living, London, Palgrave Macmillan Publishers Limited, 2015, pp. 117–118.

85 Dominic Johnson is an academic and occasional performer whose practice has been engaged in revising and reinscribing the history of performance art using a different range of strategies including eliciting oral histories from living artists. The Art of Living (2015) includes an interview with Sheree Rose which goes some way to redressing her exclusion from previous histories, and affirming the “constitutive” role that Rose played in her collaborative work with Bob Flanagan.172 Johnson’s attentive methodology in recuperating histories of performance art, and connecting queer practice of the present day with the work of elders and forebears, resonates strongly with the awareness of historical practice that I hoped to bring to my research and exhibition. In focusing on the “lived nature of artistic practice”, Johnson invokes the idea of the “art-life continuum”173 which resonates strongly with the subjectivity of the artist-as-patient, and the attachment of artistic practice to lived experience.

The collaborative performance partnership of Flanagan and Rose, who were lovers for fourteen years, emphasises an approach to art-making as a reciprocal form of care. Rose and

Flanagan also made visible—through the extreme form of a master/slave contract—the relationship between patient and carer, which is a largely unseen and undervalued part of the chronically ill, medical patient experience. Photographic documentation of Visiting Hours, with material excerpts of particular works as well as Flanagan’s poetry, were shown in The

Patient, along with a full reproduction of the endurance-based photographic work, Wall of

Pain (1982). For me, the documentary images reflect a particular moment of activism on the part of the institutions involved in staging difficult, potentially traumatic work of current social and political significance in public spaces. In reproducing and displaying the documentation of Visiting Hours in The Patient, I wanted to acknowledge that while over

172 D. Johnson, The Art of Living, London, Palgrave Macmillan, 2015, p. 107. 173 Ibid., p. 3.

86 twenty years old, Flanagan and Rose’s live inhabitation of the contemporary art space, still resonates as challenging and taboo-breaking.

The Surviving Collaborator and the Continuing Life of the Archive

Rose’s archives, including documentation of her work with Flanagan, are held in a specialist university archive in Los Angeles, and were approved for acquisition due to Rose’s commitment to photographing the Queer and S&M scenes in Los Angeles across the 80s and

90s. The ONE National Gay and Lesbian Archive at the University of Southern California holds the unsorted collection of Rose’s works in archive boxes on four levels of shelving, along with numerous art objects, sculptures and props used in performances. In April 2016, I was able to undertake fieldwork for my research after being granted permission by ONE’s

Curator, David Evans Frantz, to look through the archive. This was facilitated by Rose, whom I was able to contact on Facebook, meet with on Skype and spend time with during my research.

As Dominic Johnson footnotes in his interview with Rose for The Art of Living (2014) and as

Rose herself discusses in an interview with Tina Takemoto, she has endured situations with other creative practitioners who have exploited her work, or written her out of the history of collaborating with Flanagan.174 At the time of our meeting, many of the objects and artworks that Rose and Flanagan had produced for or shown in the exhibition Visiting Hours (1994)— which I was particularly interested in—had not been returned from an exhibition held several

174 Rose has an ongoing dispute with Kirby Dick, the director of Sick! The Life and Death of Bob Flanagan: Supermasochist (1997) which includes the use of her documentation, and her share in the film’s profits. T. Takamoto, ‘Love is still possible in this junky world: Conversation with Sheree Rose about her life with Bob Flanagan’, in Women and Performance: a journal of feminist theory, vol. 19, no. 1, 2009, pp. 103–105, https://www.tandfonline.com/doi/citedby/10.1080/07407700802655588?scroll=top&needAccess=true, (accessed 30 June 2018).

87 years before by a commercial gallerist. I went in to this material research at the archive with a strong sense that whatever I did would not deplete Rose’s resources, but add to them by locating, digitising and reproducing content from the artist’s unsorted archive boxes, and then returning these to ONE for the archive’s use following the dismantling of the exhibition tour.

The two copies of Wall of Pain and the twenty mounted images of Visiting Hours presented in The Patient are being gifted to the archive. This is a secondary result of my CPBR, but very much connected to my methodology of situational and material care, in being able to research and reproduce the works in-person.

Figure 7: Bob Flanagan and Sheree Rose, Wall of Pain, 1982. The Patient installation image, UNSW Galleries, 2016. Photo: Silversalt Photography.

From 29 March to 6 April, 2016, I trawled through about fifteen archive boxes that were filled predominantly with slides and negatives which included the collaborative work of Rose and Flanagan, but also Rose’s documentation of the SM club scene mixed in with family

88 photos. I was able to locate a number of coloured slides documenting the various exhibitions of Visiting Hours, which I scanned. During this process, I found what seemed to be the complete series of negatives that comprised the original photographic work Wall of Pain

(1981–1992) which had been included as a grid of images in the Visiting Hours exhibition. I decided to scan this entire folder of negatives, and use these to reconstruct as faithfully as possible, the original artwork. The work is comprised of over 800 standard snapshot-sized images, and took me over a week in the archive to scan, and another two weeks in Sydney to retouch and prepare digital files for printing. My execution of this labour ties directly into my methodology of embodied and attentive curating through situational and material care. It demonstrates the connected nature of practical skill and knowledge in conceptual and aesthetic outcomes in my curatorial practice based research.

I have already mentioned in Chapter 2.2, Rose’s ongoing collaboration with British performance artist, Martin O’Brien, and their extension of the lifespan of aspects of Rose’s performance work with Flanagan. My research in Los Angeles introduced me to several other artists and researchers who are developing new work with Rose and with her archive. Rose and artist and curator Rhiannon Aarons, have recently published a book project, The Book of

Medicine (2018), an autobiographical lexicon on medicine, which Flanagan started to compile but was unable to complete before his death, and which Aarons was researching in the archive at the same time as my visit.175 Rose’s collaboration with Aarons and other artists and researchers in their twenties and thirties directed our discussions towards the possibilities of intergenerational exchange, and the extension and transference of artistic practice through different creative bodies. These conversations informed my decision to invite Rose to

175 R. Aarons, Publish Bob Flanagan's Book of Medicine, Hatchfund, https://www.hatchfund.org/project/publish_bob_flanagans_book_of_medicine, (accessed 4 July 2018).

89 Australia to perform with local artists for The Patient. My work with Rose engaged my situational and material care, resulting in the production of artworks from the archive, which can now be added to the research outcomes of the ONE National Gay and Lesbian Archive. I also regard my own curatorial research as contributing to the longitudinal care of Rose and her new collaborators, in ensuring the continuing life of the work of Flanagan and Rose.

Figure 8: Bob Flanagan and Sheree Rose, installation of images and objects in The Patient at UNSW Galleries, 2016. Photo: Silversalt Photography.

The situations and contexts for medical care and intervention, and the care of communities, institutions and individuals around artists-as-patients, their artworks and their archives create a network of care. In all of the cases I have described, I have detailed my own methodologies in requesting, selecting and preparing material and existing work to be shown in The Patient.

Through this, I have demonstrated how my caring practice of embodied, attentive curating affects how each artwork manifests towards the exhibition outcome. My situational, material and conceptual care of these artists and works, yields results ranging from access to source material for reproducing works in the case of Flanagan and Rose, to the privilege of viewing and utilising a personal account of illness in the case of Carol Jerrems. In the following case

90 study of John A. Douglas, an artist with whom I have worked since 2010, I delve more deeply into how embodied and attentive curating manifests within this relationship between artist and curator, through reciprocity and longitudinal, conceptual and emotional care.

3.5 Case Study 1: John A. Douglas

Figure 9: John A. Douglas, Body Fluid II (redux) 2011, Performance Space. Photo: Heidrun Löhr.

The man, short of stature and unusually round about the middle, is covered from head to foot in a gold lamé costume. It’s a morph suit. You can buy them on Ebay, and wear them to parties if both anonymity and exhibitionism are your shtick. But the man is not at a party. He is in a gallery, moving purposefully, with nuanced gestures, around a circumference of space inscribed by lengths of clear plastic tubing. The plastic tubes attach his body, via catheter, to a dialysis machine. Any initial amusement at his appearance dissipates somewhat on noticing

91 this. Several metres in front of him tatami mats are installed on raised bases where several visitors lie down or sit, watching him. Some stay for a few minutes, others for hours.

Occasionally the man will lie down on his own mat and cover himself with a silver emergency blanket—the kind you see offered to marathon runners at the finish line to prevent them from fainting at the sudden change in temperature and exertion. People who walk into the performance at this point often mistake the gold man for a sculpture, and some approach him with a tentative poke, startling when he moves at their touch.

Behind the man, arranged like an elaborate altarpiece are three continuously looping video projections of the same gold character traversing inhospitable Australian environments—the desert, the saltpan and the snow-capped Snowy Mountains. Places where human survival, without support, would be impossible. The man slides awkwardly down a russet-coloured sand dune, in homage to Bowie’s character TK in “The Man Who Fell to Earth”. He levitates above a golden pool of fluid above snow-capped mountain ranges, as if fuelled by its sustenance. He appears disoriented and lost, on the dryness of the salt-lake.

The dialysis being performed in this space, is peritoneal—nutrient fluids slowly trickle into the artist’s abdomen. If you watch him over a number of hours, you might see his tummy become taut, and push against the shiny fabric. The room is gallery-cold but it looks uncomfortable and hot under the lights. The dialysis machine occasionally beeps, interrupting the man’s sci-fi soundtrack and choreography, forcing his attention away from movement to attend to the machine. Bags of fluid are changed, he connects and disconnects the tubes, his abdominal cavity eventually drains out, and the performance ends. He unzips the costume’s hood, takes his blood pressure reading with the assistance of a volunteer, weighs himself and leaves.

92 This performance continues over 10 hours, four days per week, over five weeks.

I convey my memory of Douglas’ endurance performance, in order to encapsulate my intention to inhabit, with full attentiveness, the work of the artists I research and engage with as curator. This echoes the intention of Douglas for this performance, its duration and gestural choreography to create a meditative space in which visitors could contemplate their own relationship to illness and mortality. The project, Body Fluid II (redux) (2013) was commissioned by me and presented at Performance Space, Carriageworks in Sydney when I was co-director, and was my second curatorial engagement with the artist—the first being a one-off ten-hour performance development of the same work in 2011.176

John A. Douglas is an artist working across photomedia, video, and performance, who started to address his experience as a medical patient within his artistic practice in the late 2000s.

Douglas’ works are dense with cinematic citations, and his first major project engaging with his kidney failure and dialysis treatment, Body Fluid, referenced Nicolas Roeg’s 1976 film,

The Man Who Fell to Earth starring David Bowie. In this work his own, gold-sheathed and alien(ated) body—a spaceman on life-support—is used as a central motif, durationally occupying spaces and uninhabitable natural environments. I began working with Douglas in

2010 and we have since developed a committed creative relationship with each other, which is strongly based on friendship and mutual support in aspects of life that would ordinarily fall outside of a traditional curator/artist dynamic in terms of the depth of care from both sides. I produced two of Douglas’ performances while working for Performance Space in Sydney, and independently commissioned his work, Circles of Fire – Variations (2016-17) for The

176 J.A. Douglas, Body Fluid 1 (After NJP) & Body Fluid II, John A. Douglas, http://www.johnadouglas.com.au/project/body-fluid-i-after-njp-body-fluid-ii, (accessed 5 July 2018).

93 Patient.177 We initially began discussing this new work as I drove him to the renal unit of

Prince of Wales Hospital, in the days and weeks following his successful kidney transplant in

2014. I refer to this period leading up to the presentation of The Patient, as it demonstrates how emotional and situational care in this CPBR, leads to conceptual and practical outcomes.

The crossover of art with life yields different kinds of results through the personal and emotional exchange of information and feelings, than a scheduled meeting between professional parties.

As an artist who has lived with renal failure for a significant part of his adult life, Douglas’ work of the past ten years has delved into the complexity of this lived experience as a medical patient. Central to his artistic enquiry is his own body which appears in all of his work, and through it, his recognition of its/his dependence upon both internal and external agents to survive.178 This is suggested through his narrative approach to video and photomedia, which uses imagery and enacts surreal performances referencing the interior of his body and its organs, as well as symbolic surgical procedures that are performed upon it.

After receiving his kidney transplant, the source of his medical dependency which had previously been daily peritoneal dialysis treatment, has shifted to a continuous regimen of immunosuppressant medication supporting a donated organ.

Douglas’ practice—like the practices of many artists—is supported through the work of a significant other. Melanie Ryan, his partner, has facilitated aspects of the development and presentation of Douglas’ work and is credited with an array of production and support roles.

177 I previously published a short account of this work in the ‘Anxiety’ issue of Artlink in 2017. B. Dean, ‘The art of dis-ease’, Artlink, vol. 37, no. 3, 2017, https://www.artlink.com.au/articles/4616/the-artof- dis-ease/, (accessed 28 August 2018). 178 This, of course, is an inherent condition of all human and non-human organisms, as well as a key concept in the new materialist theory that I will discuss in the next chapter.

94 In the ten-hour durational performance of Body Fluid (2010), Ryan acted in place of a nurse, in case the tube connecting Douglas to his dialysis machine became twisted, or if problems arose with the sterile connections between Douglas and his catheter, which could lead to infections. Beyond attending to his medical care requirements in performance contexts, Ryan also manages photography for Douglas’ location-based video shoots, by running logistics on the ground and performing the duties of a stage manager and camera operator as required.

This work frees Douglas to perform in character. Douglas has expressed that Ryan is the only person who understands the complexity of what he needs, both in terms of technical achievement, and personal/medical care. I draw attention to Ryan’s support to acknowledge the expertise involved in her care, which also extends to areas of practical and aesthetic knowledge for the production of her partner’s work. It is important to my conceptualisation of Biomedical Art that the multiple agents and collaborators involved in its making, and their respective, situated forms of knowledge are recognised.

With Douglas’ transition from dependence upon self-administered dialysis treatment, to the increased physical freedom made possible by his kidney transplant surgery, he has also altered his approach to practice, which is now more collaborative, and less of a solo endeavour than when we began working together in 2010. Involving numerous other creative as well as scientific and medical practitioners, his large-scale project, Circles of Fire (2016– ongoing) is an iterative video, performance, virtual reality and photomedia project addressing his unfolding experience of life on the edge of illness and health, as a transplant patient. The project has involved location shooting that was previously impossible for him when on dialysis, and has taken him to several overseas destinations including Canada, Turkmenistan,

Germany, England and Italy, accompanied by Ryan. Another continuing collaboration for this recent work, was established after his first presentation of Body Fluid II (2010) at

95 Performance Space with choreographer, Sue Healey. Healey’s practice has included devising work with artists of different abilities and non-dancers, which has made her engagement with

Douglas, an artist with disability in his late fifties, integral to his ability to inhabit characters for durational performances and performance-based videography on location.179

Figure 10: John A. Douglas, Circles of Fire – Variations, 2016, installation at UNSW Galleries. Photo: Silversalt Photography.

In addition to Healey, Douglas also works with fibre textile artist, Michele Elliot who fabricated his costumes180 and with performance maker Alejandro Ronaldi on interactive

179 Healey co-devised the cyclic choreography for Douglas’ ten-hour performances for Body Fluid II (redux) in 2013 and has continued to work with him for the various iterations of Circles of Fire. 180 M. Elliot, News, Michele Elliot, https://micheleelliot.com/page/news, (accessed 22 June 2018).

96 costumes and aerial movement.181 Circles of Fire – Variations (2016-2017) includes three other performers who represent the surgeons and nurses responsible for his transplant operation, including the artist Stella Topaz, who is a registered nurse and health advocate by day, and who performs an actual cannulation on Douglas in the video work. The artist’s expansion of players within the narrative of this project, and his recognition of the people engaged in his healthcare through them, expresses the idea of coexistence and a network for care within his work. The kidney itself, The Intruder (2016) is also aestheticised as a stylised anatomical model and represented in this body of work as a glass object, produced by artist

Nadège Desgenétez.182

During Douglas’ development of Circles of Fire, I successfully applied for a residency for him with SymbioticA at the Department of Anatomy and Human Biology at the University of

Western Australia. In 2015 he learned techniques in their laboratories to look at aspects of his illness at close-range. In a previous residency at the Museum of Human Disease in 2013, which I helped to broker, Douglas took photographs of pathology in human organs that reflected his own internal conditions and used these to create composite landscapes for the work The Visceral Garden – Landscape and Specimen (2013). These instances of my involvement in creating situations for independent research and aesthetic outcomes for the artist, demonstrate my conceptual and material care for him and his work, longitudinally and beyond the scope of an exhibition. For the first time, this opportunity with SymbioticA has enabled him to scrutinise his own biomateriality. Using light microscopy, he was able to photograph the depleted T-cells in his blood that he had isolated in the laboratory from a

181 J. A. Douglas, Protected: Alejandro Rolandi | LED COSTUME FINAL OUTCOMES, John A. Douglas, http://www.johnadouglas.com.au/alejandro-rolandi-led-costume-final-outcomes, (accessed 22 June 2018). 182 J.A. Douglas, Protected: Nadège Desgenétez | Glass Work Documentation, John A. Douglas, 2016, http://www.johnadouglas.com.au/tag/nadege-desgenetez, (accessed 22 June 2018).

97 blood transfusion.183 During this time in Perth, he also interviewed a mycologist, Dr Yit Heng

Chooi, about the cyclosporine active in immunosuppressants, which causes neurotoxicity in many transplant patients, and is responsible for dramatic changes in personality.184 Douglas’ artistic research on the physical and psychological impacts of transplant surgery, reveals on scientific and experiential levels, his embodied refutation of the Cartesian split between the mind and body, and the still widely-held notion that replacing a faulty organ represents a medical cure.

Figure 11: John A. Douglas, Circles of Fire – Variations, video still, 2017. The left side of the image shows a montage of t-cells.

While highly stylised, Douglas’ work represents his body with a heightened reflection upon its functions and pathologies. His work also engages with his cognisance of existing—within the medical complex—as both object and subject simultaneously, in being the object of medical study, as well as a subject with experience and perspective and a voice with which to

183 J.A. Douglas, Protected: SYMBIOTICA LAB | T-Cell Microscopy, John A. Douglas, 2016, http://www.johnadouglas.com.au/symbiotica-lab-t-cell-microscopy, (accessed 5 July 2018). 184 J.A. Douglas, Protected: Research Archive | Mycology, John A. Douglas, 2016, http://www.johnadouglas.com.au/symbiotica-lab-mycology, (accessed 5 July 2018).

98 express it.185 In terms of thinking about the body as a site of knowledge and knowledge- making—which has been the focus of feminist work in biological science discourse including that of Donna Haraway and Elizabeth Grosz—Douglas embodies, within his body and his work, the perspective of a “knowing self” that is constantly changing, and partial, in terms of its incomplete nature without the support of other things/people/systems. This embodiment has recently been quite actively tested through Douglas’ development of work engaging with his transplant experience while simultaneously recovering from the transplant, and living with the ever-evolving contingencies of immunosuppressant medication. In this quote from my post-exhibition interview with the artist, Douglas describes the connection of his recovery with his art-making:

I didn’t know if I was going to survive or not, so that’s the ultimate context … I

was making that work as I was going through the experience of recovering from a

transplant, and the heaviest aspects were the dark, emotional, nightmarish, almost

uncanny, Freudian-like terrors that are the lived experience of a lot of transplant

patients.186

These terrifying aspects of living as a transplant patient, are conveyed through his work in images that disconnect his body from landscape, and submerge his figure in darkness.

185 P. Redding, ‘Science, medicine and illness: rediscovering the patient as a person’, in Komesaroff, P.A. (ed.), Troubled Bodies: Critical perspectives on postmodernism, ethics and the body, Durham, NC, Duke University Press, 1995, p. 87. Redding writes, “In modern scientific medicine an analogous distinction between the ‘subjective’ and scientific (or objective) views of an illness is found in the distinction between the perspectives of the patient and doctor. The patient knows the disease from the point of view of his or her own lived body. He or she knows what it is like to be sick and gives expression to this point of view in recounting the symptoms. From the doctor’s theoretically grounded diagnostic and therapeutic perspective, however, the specific complaints of the patient are downgraded as forms of knowledge.” 186 J.A. Douglas, ‘Interview with John A. Douglas’ [interviewed by Bec Dean], 8 September, 2017.

Figure 12: John A. Douglas, Circles of Fire – Variations, video still, 2017.

In discussing his experience of transplantation, Douglas has referred to Jean-Luc Nancy’s intimate philosophical account of his heart transplant titled L’Intrus (2000). In L’Intrus (The

Intruder) Nancy expresses “estrangement” from his body, and a “troubled state of intimacy” is inferred through the shifting tone of his writing.187 Nancy’s work engages with the disturbance of the idea of self that is common in transplant patient experience, as documented in the many case studies provided by Lesley A. Sharp in Strange Harvest: Organ

Transplants, Denatured Bodies, and the Transformed Self (2006). In talking about Nancy’s writing Douglas echoes the awareness of self as altered and transformed in this way:

When he talks about the intrusion, he’s not just talking about the transplanted

organ, he’s talking about your entire body … as an intruder into your life because

187 P.M. Adamek, ‘The Intimacy of Jean-Luc Nancy’s “L’Intrus”’, The New Centennial Review, vol. 2, no. 3, East Lansing, Michigan State University Press, 2002, pp. 189-201, http://www.jstor.org/stable/41949361, (accessed 1 May 2018).

100 it’s sort of thrown in your face … I pay attention to a body that is not a normal

body, it’s a body that’s been altered, as well as my mind and my emotional

landscape … everything’s been altered.188

I recall Douglas’ interest in Nancy, not only for this personal account of the transplant experience, his mort vivant (living death) and the “insistent deferral of death”189 that the intrusion provides, but for the philosopher’s previous work on coexistence and community as essential to the very existence of individuals: “Being cannot be anything but being-with-one- another, circulating in the with and as the with of this singularly plural coexistence.”190

Nancy’s insistence that there is no existence without coexistence, takes on a very literal reading for the transplant patient.191 But patient experience—and from my perspective,

Douglas’ experience in particular—also makes explicit the importance of coexistence with other humans and networks for survival including family, loved ones, doctors, service providers, and communities. My work as the curator of Douglas’ art practice resides within this network of support and care, rather than discretely outside it as ‘professional curatorial work’. My personal creative and professional fulfilment in approaching curatorial practice through attentive care, is reciprocated by Douglas in a profound way. In discussing his work following Body Fluid II (redux) (2013) which I curated for Performance Space, Douglas says:

188 J.A. Douglas, ‘Interview with John A. Douglas’ [interviewed by Bec Dean], 8 September, 2017. 189 F. Wynn, ‘Reflecting on the ongoing aftermath of heart transplantation: Jean-Luc Nancy’s L’intrus’, Nursing Inquiry, vol. 16, no. 1, 2009, p. 3, https://doi.org/10.1111/j.1440-1800.2009.00438.x, (accessed 25 July 2018). 190 J. Nancy, Being Singular Plural, trans R.D. Richardson and A. E. O’Byrne, CI, Stanford University Press, 2000, p. 3. 191 These are connections that I address in the next chapter through new materialism, including Donna Haraway and Jane Bennet who include non-human and lively material agents in this network of coexistence.

101 because I was given an opportunity to make this work … I was able to move on to

making work about transplant. Then I realised that it was giving me the

motivation to actually not only make the work but to stay alive.192

Through this particular case study, I want to identify my expansion of the idea of curatorial care into care for artists, not as a maternalising, unidirectional or hierarchical imposition upon an artist to ‘look-after’ them, but as an attentive engagement that is part of an already existing and expanding network of relationships with the artist. My care materialises through longitudinal, situational, material and emotional forms. The blurred delineation between art and life in Douglas’ perception of his own practice is also mirrored in our interactions, which as previously described, manifest through friendship. Longitudinal, attentive curating, is most tangible in my work with Douglas, where situational, conceptual and emotional forms of care also coalesce. In terms of the networked nature of this relationship, I also consider the flow of support to be mutual and reciprocal.

3.6 Caring and the Artist-as-Patient

My research of artists-as-patients extending across Chapters 2 and 3, has revealed the medical context as producing bodies of decentred subjectivity, corporeal rearrangement and uncertainty. Thus the production of the body and self “as a means of public communication”193 finds specificity in the body of the artist-as-patient. Artists-as-patients embody discourse that challenges the dualisms of illness/health, mind/body, object/subject, human/machine. They present their subjective, embodied knowledge as art, through different

192 J.A. Douglas, ‘Interview with John A. Douglas’ [interviewed by Bec Dean], 8 September, 2017. 193 A. Jones, ‘Introduction’, in Warr, T. (ed.), The Artist’s Body, New York, NY, Phaidon, 2012, p. 33.

102 creative strategies which include resisting the medical gaze, as well as finding creative platforms through communities of shared experience. My research has shown how artists-as- patients making Biomedical Art—including John A. Douglas, and Sheree Rose in her work with Martin O’Brien and Rhiannon Aarons—challenge death and the structures of finitude with their embodied knowledge. I have detailed how, from this embodied perspective,

Douglas’ work reaches beyond premature death through performing the transplant-patient body, while Rose transfers her intimate performances with Flanagan onto younger others. I propose that these examples of artistic practice, which express both profound and challenging aspects of human experience, call for deep consideration of curatorial care.

My study of care and the artist has described a complex and multi-layered network of relationships and connections. I have analysed artworks and historical material and the situation of different artists-as-patients within the healthcare and social contexts that informed their work. Connecting to these institutional, community-centred and intimate forms of care, I have considered my curatorial care towards individuals, estates and archives in which artistic works and legacies are held, and the tangible exhibition outcomes that this methodology yielded. I have detailed how I extended my situational, material and conceptual forms care for artists, their works and their archives.

My case study of John A. Douglas presented the artist’s practice in relation to his medical history and treatment, and interpersonal relationships to loved-ones. Through his network of care, I identify his life-partner as a crucial agent in the success of his practice, in her emotional and technical comprehension of his needs. My commitment to working with

Douglas through modes of longitudinal, situational, conceptual and emotional care, towards the development and presentation of Circles of Fire – Variations, is shown to be reciprocated

103 by the artist in his articulation of its importance to his life. My case study of Douglas, emphasises that curatorial labour in caring, exists as part of the network of care in which the artist-as-patient is connected through.

From the artists’ patient bodies, the networks of care that surround them, including my attentive curatorial labour, in Chapter 4, I delve into the human body and its materials, to analyse how care is applied by artists to lively materiality in the contexts of Biomedical Art.

104 4. Care and Lively Materials

From the body of the artist, to the substance of the body, in this chapter, I reorient my perspective on Biomedical Art from looking at medical patient body in art and society, to the lively materials of which bodies themselves are comprised. My case studies engage with the practices of two artists who use bodily materials as the foundation for new work. In particular I focus on the following research question in relation to lively materials:

What are the characteristics and qualities of Biomedical Art?

- Its aesthetics? - Its modes of production? - Its creative contexts?

I then build upon my concept of care in curating, as it relates to lively materials through

Biomedical Art, by addressing my second research question:

How does curating Biomedical Art and art work engaging with the artist-as-patient and the medical patient subject, expand the concept and practice of care in curating?

105 Having considered the field of Bioart in Chapter 2, I attend to its influences on interdisciplinary collaboration in the biomedical; the development of the aesthetics and ethics of practices that manipulate the materials of living creatures; and the questions for care through artistic practice and curating that such practices elicit. How does working with the lively and the living expand the potential for care in curating? In this chapter I draw out these ideas and examples of practice in relation to the movement towards new materialism, using my research methodology with a particular focus on situational and material care in my embodied curatorial practice. In particular, I analyse how curatorial practice can respond to the needs of Biomedical Art in its liveliness.

I present two case studies by artists Guy Ben-Ary and Helen Pynor, both of whom showed major new works in The Patient. Having worked with these artists periodically over many years, I reflect upon their influence on my curatorial practice and vice versa, and the questions for curatorial care that their practices have stimulated. In particular, their return to, or focus on the human within biological-based practices adds complexity to an already complex territory in which animal and non-human subjects intermingle with lively objects.

Their engagement in these new works with human experience, biological matter, and care for lively material were key factors driving my research for The Patient. My analysis of my curating practice focuses on my situational care towards the artists working in laboratories, and my material and conceptual care towards the presentation of their works.

Both of the projects I provide case studies for in this chapter are, by their very nature, complex to describe and to categorise, as they involve multiple components derived from years of research and development with different project partners and affiliates. Aspects of the hands-on enquiry for each of these works by Helen Pynor and Guy Ben-Ary took place

106 and continue to be developed in the practical spaces of scientific laboratories, in which familiar distinctions between object/subject, life/matter, living/dead and human/machine, are questioned. The diagnostic problem of the categorisation of disease, identified by Foucault in

The Birth of the Clinic: An Archaeology of Medical Perception (1963) as resistant to essentialisation, through the fact of its embodiment, its appearance in the body of a living patient,194 is mirrored in the work of the artist-as-patient which also resists categorisation through that work’s embodied nature. In this chapter, boundaries and categorisations become even more indefinite, as my research with artists encounters the “leaky distinction between animal-human (organism) and machine.”195 These case studies engage primarily with the care of artists towards their work involving lively material, and how my attentive curating recognises and supports the nature of this work.

4.1 Lively Materials and Biomedical Art

A question that initiated my research into this area of Biomedical Art practice, was whether artists empowered by experimentation in the laboratory, through modes of practice established by Bioart, were beginning to turn the lens of scientific enquiry onto themselves?

This question was stimulated by my previous work with artists including Helen Pynor and

John A. Douglas, as well as through observing Guy Ben-Ary—working from a research laboratory context with ethical clearance for the use of a variety of animals—undertake rather more complex collaborative work using his own biological material. Because of the human-

194 M. Foucault, The Birth of the Clinic: An Archaeology of Medical Perception, New York, NY, Vintage Books, 1994, p. 9. 195 D. Haraway, ‘A Cyborg Manifesto: Science, Technology, and Socialist-Feminism in the Late Twentieth Century’, in Manifestly Haraway, Minneapolis, MN, University of Minnesota Press, 2016, p. 11.

107 centred nature of these works, and their varying relationships to the medical, I was also conscious of their more social and socially-engaged processes and outcomes. All of the artists worked with human performers, and in the case of Helen Pynor, Eugenie Lee and John A.

Douglas, with people with lived experience of medical conditions and illness. In these works,

I was seeing the separation enacted by the “medical gaze”—of the patient subject from their identity—transformed by the empowerment of artists in perceiving their own illness and pathology through a scientific lens, and with the support of scientific collaboration.

Bioart as described by Eduardo Kac “opens itself to the entire gamut of life processes and entities”196 while my own focus on a selection of artistic practice, is rather more limited in range and coalesces around the human. Oron Catts and Ionat Zurr, as I have detailed in

Chapter 2.1, have written of their own practice and the programs offered by their laboratory and research centre, as having been made with the tools of biomedicine for non-medical outcomes.197 And although the work I am engaging with is not medical in and of itself, it specifically engages with aspects of medicine and with human, medical subjects. However, the kind of reorientation to the human that I am encountering through my curatorial engagement with these art practices, is attached profoundly to other kinds of life forms and lively materials, as well as to the aesthetics of Bioart. By lively materials, I refer to Jane

Bennett’s work in Vibrant Matter (2010), in which she presents matter and materials previously considered inert or benign, as lively and agential, as “animate things rather than passive objects.”198 The human subjects that are utilised by, or who collaborate with the artists in my case studies, are presented as inextricably entangled with lively others—

196 E. Kac, (ed.), Signs of Life: Bio Art and Beyond, Cambridge, MA, MIT Press, 2007, p. 20. 197 O. Catts and I. Zurr, ‘Growing for Different Ends’, in The International Journal of Biochemistry and Cell Biology (2014), vol. 56, 2014, pp. 20-29. 198 J. Bennett, Vibrant Matter: A Political Ecology of Things, Durham, NC, Duke University Press, 2010, p. vii.

108 machines, animals, drugs, viruses—as well as other people, with society, its stigmas and its politics.

The situation of the human, medical subject in these works is suggestive of Haraway’s vision of a feminist network. As she states, “I prefer a network ideological image, suggesting the profusion of spaces and identities and the permeability of boundaries in the personal body and in the body politic.”199 In this network, the body is suffused by its surroundings, and other identities rather than presenting as a monolithic construct. This reading of the human body can be recognised readily in the work of John A. Douglas, whose medical patient body is quite literally composed of his and other human biological matter. And it is not only the obvious introduction into his renal system of a donated kidney which keeps him alive, as

Circles of Fire – Variations (2016) engages with the immunosuppressants that maintain his life on the knife-edge of health and illness. Douglas references the active agent of his cocktail of drugs, cyclosporine, through the scarab beetle which creates the conditions for the drug’s fungal derivation, found within the dung it pushes around. The scarab beetle is, of course, the ancient Egyptian symbol for rebirth and regeneration and this reference to ancient contexts is maintained by Douglas through his use of ancient sites for performance, including the ruins of one of the first recorded hospitals in Ashgabat, Turkmenistan.200 Douglas’ highly symbolic video work is filled with these kinds of visual citations—both ancient and modern—to the lively materials and objects, chemistry and surroundings that his body intersects with, from the representation of surgical tools as ritualistic instruments, to the microscopy of his actual

T-cells sparsely illuminating what appears to be a night sky.

199 D. Haraway, ‘A Cyborg Manifesto: Science, Technology, and Socialist-Feminism in the Late Twentieth Century’, in Manifestly Haraway, Minneapolis, MN, University of Minnesota Press, 2016. p. 45. 200 J.A. Douglas, Circles of Fire, Sydney, NSW, http://www.johnadouglas.com.au/project/circles-fire-variations, (accessed 14 April 2018).

109

As Lesley A. Sharp writes in Strange Harvest (2006), the symbolic or metaphoric use of other kinds of lively bodies and materials also extends to image making in transplant awareness communication.201 But the butterflies, flowers, clouds, and trees used in these advocacy contexts, are taken to the dark side in Douglas’ patient perspective. They become beetles, bejewelled wounds, blubbery red jelly and pits of fire.

The agency of the pharmaceuticals that Douglas experiences within his body and throughout daily life, replaces the mechanical agent—his dialysis machine—which was the life- sustaining factor of his existence pre-transplant, and which featured in his durational performances of Body Fluid II – Redux (2011). The presence and necessity of these life- prolonging machines are also an audio and visual feature of other works in the exhibition. In

Tim Wainwright and John Wynne’s Transplant (2008), subjects are photographed attached to heart pumps and respirators, while the soundtrack presents an acoustic environment punctuated by beeps and mechanical compressions. ORLAN’s surgical performance in

Omnipresence: 7th successful operation (1993) is also filled with these machines as well as clocks, cameras, televisions and other communications devices transmitting her work live to audiences outside the operating theatre. Across these works, the presence of machines as life support varies. In Douglas’ Body Fluid series, he casts himself as a machine-dependent other, a cyborg. In Wainwright and Wynne’s documentary work, machines are crucially agential in their temporary surrogacy for failed organs, and for organs-in-waiting. ORLAN’s work situates the human and machine agents—all decked out in green—as the chorus for her performative act of bodily transformation through surgery. As Karen Barad writes in Meeting

201 L. Sharp, Strange Harvest: Organ Transplants, Denatured Bodies, and the Transformed Self, Berkeley, CA, University of California Press, 2006, p. 94.

110 the Universe Halfway (2007), “Workers, machines, managers are entangled phenomena, relational beings, that share more than the air around them; they help constitute one another.”202 On the “shop floor” of the operating theatre, this entanglement and mutual constitution of human and machine reaches its highest stakes.

All of the works in The Patient exhibition, in fact, demonstrate the entanglement of the human to lively materials and objects, “thing-power”203 and the “active powers issuing from nonsubjects.”204 The medical context is so potent with these relationships, as they literally enmesh the range of human experience between life and death; from the active agents in pharmaceuticals, to life-rendering machines, to the performance of operations in the ‘theatre’, to processes and procedures, to saline drips, to language itself. Scanning across the exhibition, these lively elements stand out the moment they are sought out: Carol Jerrems’ capturing of the ‘swoosh’ of a curtain being drawn around a patient consultation; Brenton

Heath-Kerr’s use of latex as a suit to both mimic the qualities of skin, while masking his specific identity; Bob Flanagan and Sheree Rose’s simulation of the discharge from Cystic

Fibrosis with green goo; Jo Spence’s use of minimal props to gesture towards pervasive cultural issues around feminine behaviour and societal expectation; the glove used by

Eugenie Lee transforming itself into the virtual hand of her project’s subjects; the powerful re-shaping of words by David McDiarmid which counteract the language of stigmatisation.

The work of Ingrid Bachmann in A-Part of Me (2013) presents a totally synthetic form of liveliness in the exhibition. Her kinetic sculptures with black rubber tendrils host audio recordings of the memories of transplant patients while occupying a materially oppositional

202 K. Barad, Meeting the Universe Halfway, Durham, NC, Duke University Press, 2007, p. 239. 203 J. Bennett, Vibrant Matter: A Political Ecology of Things, Durham, NC, Duke University Press, 2010, p. 2. 204 Ibid., p. ix.

111 space to human flesh. The othering and objectifying of the medical patient is emphasised in this work through her use of plastics and robotics.

The presence of lively materials throughout these works, and particularly in the works of my case study artists in Biomedical Art, call into question the dualism of subject and object that are produced by the medical gaze, as well as the organising, scientific gaze to which the medical gaze is related. Cyborgs, lively tissue of human provenance, donor organs passed from the dead to the living, and animal material that stands-in for the human, exist between and across these boundaries. The representation and embodiment of these objects/subjects in art reaches beyond the distinct spaces of the hospital or laboratory, and brings their problematizing, troubling existence to cultural, social and aesthetic conversation. In their paper, Towards a New Class of Being – The Extended Body (2006) Oron Catts and Ionat Zurr write about the pioneering work of Honor Fell at the Strangeways laboratories in the UK, and her encouragement of her scientists “to adopt what she referred to as ‘the tissue culture point of view’ as a way to better understand the processes and needs of cells in vitro.”205 Catts and

Zurr push this notion further by thinking of life outside the body as “The Extended Body.”206

The Biomedical Art that I examine through case studies of Helen Pynor and Guy Ben-Ary later in this chapter, represent the extended bodies they use in their works as both agential and offering knowledge to their research. The care that is undertaken by the artists in keeping their lively materials alive, is reciprocated through aesthetic feedback.

In Jane Bennett’s Vibrant Matter (2010), the author identifies human constitution as “vital materiality” through both the factual nature of our construction from a range of separable

205 O. Catts and I. Zurr, ‘Towards a New Class of Being – The Extended Body’, in Artnode 6, 2006, pp. 1–9. 206 Ibid.

112 material elements, and in the “lively and self-organizing” nature of these elements themselves.207 It is the human body conceived of not only as a whole, but as a network of connected, lively parts, tissues and fluids. It is this self-organising, material liveliness that is foundationally integral to both of the practices of the case study artists in this chapter. The liveliness of neural stem-cell clusters for Guy Ben-Ary, produces a source of potential communication between the cells and other human agents. For Helen Pynor, the cell growth and division of seemingly dead flesh is interwoven with the human, lived-experience of the phenomenon of clinical death and resuscitation.

Both of their projects engage with lively, bodily materials to stir very difficult, uncomfortable questions about the possible viable futures of humanity in a long-term sense, and the future that awaits us at our death. The use of these materials enables artists to reach beyond the finite possibilities of mortal life and into regenerative genetics and stem cell science and their uses. As with much practice in the field of bio-art, these works in Biomedical Art are provocative because of the loaded territories—animal experimentation and stem cell technologies—that they operate within. Using unscientific methodologies in science contexts, they give rise to more questions than answers in relation to the agency of the patient body, and the agency of human material in the medical context. But I am particularly interested in how these artists speak back to the medical gaze and the scientific gaze with lively material complexity, from within biological science and medical environments. They take the wet material from the laboratory into exhibition contexts, such as The Patient. Discourse on our medical dependence on animal test subjects, and different potentials for human immortality, can thereby take place the public domain.

207 J. Bennett, Vibrant Matter: A Political Ecology of Things, Durham, NC, Duke University Press, 2010. p. 10.

113 4.2 The Artist as Carer for Lively Materials

Using the examples of Biomedical Art that I have researched and curated for The Patient, I argue that they return an aspect of the human and the biomedical to the expansive realm of wet-biology-as-art, initiated by and proliferated through the field of Bioart. But this human focus is not exclusively anthropocentric. The human returns in this artistic research, by way of attachments to animal life, semi-living tissue culture, blood and other body fluids, machines, medical apparatus, procedures and pharmaceutical agents. In a related way, for curating Biomedical Art, I consider my practice as a kind of return to the foundational principles of curating—caring for objects—where the objects in question are transformed by life. They are troubled and entangled with subjectivity. In the main, they are not objects at all, but artists, collaborators, medical subjects, lively materials, and audiences. Acknowledging this is a key finding of my research.

These practices—of the artists I have worked with and my own—are demonstrably aligned with the theories of vital materialism. Common to all four of my artist case studies, is their research and development of work through collaborative processes, engaging with multiple participants, disciplines and specific expertise. To employ Haraway’s terminology, the artworks are made through the temporary alignment of multiple, “partial perspectives”.208 All artists utilise human performance and the collaboration of other human bodies. They each develop lively materials or processes in the laboratory with the support of scientific collaborators. The works all engage with and challenge ethical issues across a range of dimensions from the use of animals, patient self-care, and the engagement of audiences in

208 D. Haraway, ‘Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective’, Feminist Studies, Vol. 14, No. 3. Autumn, 1988, pp. 575-599.

114 potentially uncomfortable experiences. Their projects also require such specific input from collaborators that aspects of each project are made in different cities and countries as well as in different kinds of spaces; from laboratories and performance spaces, to universities and research centres. The artists produce works that reveal the structures and apparatus of their making. They are vividly entangled across the material and social dimensions of collaborative, interdisciplinary art making and my CPBR.

In order to comprehend and engage with the faceted nature of the production of these works,

I have necessarily travelled to the contexts of their making, and met with the artists’ collaborative teams. My situational care in this CPBR has been made possible by traveling to the various sites in which artists work. This has taken me to museums, laboratories, clinics, studios and artists houses in different parts of the country and the world. The other factor that these projects have in common is longevity. Douglas, Pynor, Ben-Ary and Lee have each defined the research and development timelines of their works across several years. My ongoing engagement with these artists, particularly Pynor and Douglas, means that I have developed strong friendships with them, and these ‘friendships’ disrupt the idea of a discrete kind of professional labour focused on curating. I understand my curatorial work to incorporate the theoretical with the practical, and the empirical—seeing for myself what is taking place in the processes of artistic practice from beginning to end—with the affective.

The subject of care for my practice—being distributed across lively materials, other humans as well as including the traditional art object—is attended to in a range of different ways.

Primarily, my care as a curator is realised through the recognition of the complexity of interdisciplinary artistic practice, as well as the lived experiences of artists, the care they are extending to lively materials, animals, and human participants, and the support that they or

115 their work may require in order to be presented. My embodied activity of situational care in attending to artists at various stages of their project development, enables me to empirically comprehend the various facets and components of their work, and to ultimately be more useful, more helpful, in my conceptual and material care for their work. The ethical processes undertaken by artists to variously work with animals and their materials, with human biomateriality and with human subjects as participants, is something that I can further support as the works are prepared for presentation. The ethical processes undertaken by artists to variously work with animals and their materials, with human biomateriality and with human subjects as participants, is something that I can further support as the works are prepared for presentation. This is a consequence of my having observed in the laboratory context, both the artists and their scientific collaborators in action.

Working practically with interdisciplinary art in the presentation contexts of contemporary art spaces, also generates questions for the suitability of institutions in caring for live artists and performers, as well as lively materials. In general, contemporary art galleries are not equipped to deal with the living, beyond their servicing of audience members. While galleries are typically furnished with storage facilities for crates and art objects, dressing rooms, showers or ‘green room’ spaces for performers are rarely incorporated into their architecture.

There may be consideration for visitors with disability in making galleries accessible, but the longer-term support of an artist with disability—for such considerations as a parking space, or a place to rest between performances—is not accounted for within the built environments of galleries in general.209 The management of artists’ comfort in this regard is something

209 Situations regarding the accessibility of cultural institutions are presently in a state of flux in Australia. Most public institutions for contemporary art have a Disability/Inclusion/Access Plan, which demonstrate a commitment to changing gallery and museum practice, broadly with a focus on accessibility for visitors. However, some of these include statements that commit institutions to working with and collecting artists with disability, and providing participatory artistic programs. Examples of these can be found at:

116 which, for The Patient in its first iteration, was taken-on by me as independent curator, rather than the gallery itself, particularly in the case of the first exhibition’s closing performance by

Sheree Rose and Fiona McGregor. In terms of the care of live tissue culture, which sits well outside a general gallery remit for the care of ‘objects’, I arranged with Guy Ben-Ary to locate a local laboratory to maintain his neuron clusters prior to his performances. My activity in managing artists’ reduced expectations of institutional support, is to try to make the environment better through my own efforts. I refer to these practical limitations because they emphasise for me the influence and the inseparability of the functional from the formal and conceptual—what is the scope of contemporary art that can be prioritised and presented in these contexts?

Jane Bennett writes in The Enchantment of Modern Life that, “To live among or as a crossing is to have motion called to mind, and in this reminding is also a somatic event.”210 The involvement that I have as a curator of interdisciplinary artistic practices that create

“crossings”—which blur animal and human subjectivity, human and machine subjectivity, and the crossing of the boundaries between life, death and the limits of sensory perception— is to be part of motions of change within artistic practice that aims to understand the complexity of what it is to be human. To be human and alive in contemporary culture, as these works show, is to be caught up in relationships, behaviours and systems with other things that support life.

Art Gallery of New South Wales, Disability Inclusion Action Plan, https://www.artgallery.nsw.gov.au/about- us/corporate-information/policy-documents/diap/, (accessed 28 July 2018). Museum of Contemporary Art, Access for Everyone, https://www.mca.com.au/plan-your-visit/access/, (accessed 28 July 2018). 210 J. Bennett, The Enchantment of Modern Life: Attachments, Crossings and Ethics, NJ, Princeton University Press, 2001, pp. 17-18.

117 From identifying the proliferation of lively materials in the artworks that form The Patient exhibition, I will now focus in on the specificities of particular lively materials, their care and their presentation, through an analysis of my curatorial engagement with the works of Helen

Pynor and Guy Ben-Ary in these two artist case studies.

4.3 Case Study 2: Helen Pynor

The Max Planck Institute of Molecular Cell Biology and Genetics is on the south bank of the river Elbe, in Dresden. Its glass building has an internal skeleton of floors that are arranged in taxonomic order from the macro to the micro. Laboratories on the lower floor work with organisms, while the tissue, cells and DNA are researched on ascending levels. Helen Pynor has a small amount of desk space that she shares with PhD students, postdoctoral fellows and the laboratory technician at Dr. Jochen Rink’s laboratory on the ‘tissue’ floor of the building. Rink is a regenerative cell biologist and his lab works with planarian worms, among others. Planarian worms have the curious ability to regenerate after sustaining injuries that would be catastrophic to other animals. You can cut a planarian in half, and the two halves will regrow the respective missing head or tail, and continue to live, feed and proliferate as normal.

I arrive in Dresden as Pynor is setting-up a 48-hour light microscopy time-lapse recording of her tissue culture research using chicken meat. On the morning I meet her, we walk to the supermarket where she purchased the chicken—as situational verification—and then on to the laboratory. Her decision to use shop-bought chicken was an ethical one, but not ethically watertight, which Pynor acknowledges. The institute has thousands of living animals bred for the lab under its roof as well as animal-derived material including foetal bovine serum, which Helen will need to use to feed her chicken tissue culture. But her selection of chicken

118 meat as opposed to lab-animal or embryonic chick of this work, is connected to the ordinariness of our human relationship to it as food, as familiar supermarket product, as dead.

Pynor is interested in death as a longer process than the precise moment we announce it from a clinical perspective. Outside of the laboratory, she has been meeting and listening to people with experiences of near-death and subsequent resuscitation in situations ranging from social gatherings to intensive care units. Like many of us, myself included, she carries the notions that have proliferated through culture about near death: the spirit rising above the body on the bed and moving towards the light. But to find out how long life actually remains in the body, she needs the apparatus of biological science.

And so she keeps a necessary vigil of 48 hours over cells that she has found still living in her shop-bought chicken meat. The conditions of the Rink laboratory have provided at least part of the chicken with regenerative potential. The time-lapse photography shows its cells growing and dividing.

119

Figure 13: Helen Pynor, The End is a Distant Memory, microscopy detail, 2016. Photo: Helen Pynor.

In presenting this case study of Helen Pynor’s work for The Patient, I seek to address a number of issues relating to lively materials and curating that are captured in this memory of traveling to Dresden in 2015. The work titled The End is a Distant Memory (2016), deliberately complicates the subjectivity of the human medical patient with the animal through the artist’s dual emphasis on human experience, and the uses of animal material for the purposes of biological science and medicine. I consider Pynor’s use of animal tissue and animal subjects in her work, and examine the ethical perspectives and protocols that accompany these animals and their materiality. I look at where the artist positions her own ethics in the care of vital materials and the presentation of her work, and by extension, mine as curator. In this case study, I also look at my longitudinal relationship with the artist’s practice and ideas, and the impact of these on developing a methodological focus of attentive curating through the lifecycle of projects.

120 The End is a Distant Memory (2016) is an artwork about the liminal space between life and death. As a point of departure, it invokes popular cultural references to people who claim to have had lucid, ‘out-of-body’ experiences when close to death (from which they have subsequently been revived). Pynor uses performance to engage a human collaborator in the metaphoric re-enactment of his personal near-death experience in an intensive care unit. In parallel, she uses a tissue-culture process to investigate the edges of life and death, working with chicken meat purchased from the supermarket to determine if it still contains live cells, and whether these cells can be encouraged to proliferate. The resulting installation of photographs, videos, sounds, and time-lapse microscopy sequences, creates a network of associations between the male subject of near-death experience, chickens at a free-range farm, chicken meat, and the living cells of chicken grown in a lab. The narrative produced by these associations is that of a merger of the biological with the medical, and the individual human with the industrial-scale anonymity and ubiquity of farmed chicken. The fractured multi-screen and image form that this work takes is suggestive of Haraway’s notion of the integrated circuit in the “profusion of spaces and identities and the permeability of boundaries in the personal body and the body politic.”211 Pynor presents her detailed studies into contrasting life-forms and contexts, as if they are all part of a fragmented whole. The perspective into these biological, industrial and medical frames is also partial, and this whole is unable to be grasped from a single, dominant viewpoint.

For many years, Pynor has been making work about liveness—of objects, tissue, bodily organs, animal life, and human bodies—with emphasis on porosity in form and meaning, exchanged between lively subjects. A recent photographic project, The Accidental Primate

211 D. Haraway, ‘A Cyborg Manifesto: Science, Technology, and Socialist-Feminism in the Late Twentieth Century’, in Manifestly Haraway, Minneapolis, MN, University of Minnesota Press, 2016, p. 45.

121 (2014) captures a flying fox in moments of flight, alongside movement studies of parachutes crumpling. The subjects are treated identically, drawing attention to the appropriation of human design from nature.212 In The Body is a Big Place (2011), Pynor and her collaborator

Peta Clancy performed live heart perfusion of two pigs hearts adjacent to a dream-like video installation of people sitting in an underwater waiting room, occasionally swimming to the surface for breath.213 In The End is a Distant Memory, Pynor uses a similar aesthetic strategy to unite disparate subjects. Three portraits of denuded supermarket chickens are photographed in anthropomorphic poses. They are arranged in relation to the floor-projected video of Pynor’s human subject, Rowan Thomas, being physically manipulated by performers from an aerial perspective. The chickens are rendered with the same skin tone as the human subject, and both are presented against a background of clinical grey. Techniques of anthropomorphising, mimicking and mirroring subjects in her work are contrasted with formal disjunctures. Candid documentary footage taken in the aisles of the supermarket where the chicken meat was purchased for later tissue culture, and the aisles of a chicken farm, is presented alongside microscopic footage and explanatory text etched into glass that looks like it would be at home in a science museum.

Pynor’s use of biological and laboratory techniques alongside photography, video, sculpture and the strategies of live art and socially engaged practices creates projects that can be interpreted through multiple different readings, including material, formal and social. But each of these aesthetic facets contribute to the same landscape of meaning. The abstracted forms of cells and tissue from the laboratory and the aesthetics of science communication are

212 H. Pynor, ‘The Accidental Primate’, Helen Pynor, 2014, http://www.helenpynor.com/the_accidental_primate.htm, (accessed 14 July 2018). 213 H. Pynor and P. Clancy, ‘The Body is a Big Place,’ Helen Pynor, 2011, http://www.helenpynor.com/the_body_is_a_big_place.htm, (accessed 14 July 2018).

122 brought into visual and spatial conversation with human experience, which refers back to the very real relationships that animals and the lively objects of the laboratory have with human medicine and human wellbeing. Pynor says of describing her practice as Biomedical Art:

I think for my work, Biomedical Art is a more accurate description than Bioart,

because Bioart often has the kind of connotation that you’re working with tissue

cultured cells or things that are in the very abstracted realm of the lab. When I’m

doing biologically orientated works, I always work with human subjects and

human experience … And in my case, they usually are medical subjects and

people that have had medical experience.214

Pynor’s integration of scientific experimentation and data with a social and performative approach to collaborating with people with lived experience of illness or medical trauma, has been profoundly influential on my research for this program. With Peta Clancy for The Body is a Big Place (2011), she engaged with members of the Victorian transplant community, while investigating biologically, the functionality of disembodied pigs’ hearts. For The End is a Distant Memory, the definitions of life and death were similarly investigated through animal surrogates and a human subject. Her blending of the scientific with the social encouraged my thinking about Biomedical Art in the first place, and stimulated my research of the body-based performance, the feminist photomedia, and the social activist practices that were historically and contemporaneously taking place alongside interdisciplinary and academic collaborations between science and art. For The Patient, Pynor’s work also brings the question of laboratory ethics and medicine, and the experience of animals, to the foreground of a largely human-focussed exhibition. My inclusion of this work in The Patient,

214 H. Pynor, ‘Interview with Helen Pynor’ [interviewed by Bec Dean], 29 March, 2017.

123 addresses the first question of my CPBR about the qualities of Biomedical Art, and shows it to be a field that situates the human as dependent upon all of our other lively entanglements.

Figure 14: Helen Pynor, The End is a Distant Memory, 2016. The Patient installation image, UNSW Galleries. Photo: Silversalt Photography.

Pynor’s attention to chicken life in The End is a Distant Memory, and her tracing and documenting the narrative progression of the cycle of existence for chickens farmed as meat, sets an ethical tone for the project. Rather than using animals grown and readily sanctioned for use in the laboratory, the artist draws herself as complicit as any other meat-eating human in her alternative use of supermarket-bought chicken meat for biopsy and tissue culturing. I do not interpret Pynor’s attention to this life and death cycle as an exonerating process but rather as a form of acknowledging and observing, in a processual and informed way, the reality behind the widely sanctioned consumption of chicken meat purchased from a shop.

This ethical benchmark set by Pynor in her use of chicken meat and chickens killed for meat, is communicated to visitors as information in the exhibition space, where Pynor takes care to

124 recognise these, in line with all of the collaborative elements of her work. Of working with tissue culture, Pynor says:

For me it’s about interrogating the real materiality of bodies. If you don’t go down

that road and you make art about the body, you kind of end up using

representational strategies or metaphoric strategies, which can be extremely

powerful. But there’s something else when you work with real wet tissue, real wet

biology, real cells, and you create the conditions for that tissue to do something

that is compelling … for me there’s a relation between wet biology and

photography, and why I’ve always been drawn to photography as opposed to

painting. There’s always this suggestion that this object exists in the real world.

Painting is entirely an invention and an imaginative space. It’s the link to realness

that’s important to me.215

Using tissue culture to find a live animal cell analogue to the human experience of near- death, Pynor collaborated with the regenerative cell biologist, Jochen Rink, at his research laboratory at the Max Planck Institute of Molecular Cell Biology and Genetics in Dresden.216

The focus of Rink’s lab on the regeneration of tissue from injury using the biological example of the planarian flatworm, was both a conceptual and practical collaboration for

Pynor. In this context she was able to perform biopsies on chicken meat and engage tissue culture protocols to encourage any living cells in the biopsy to grow, as well as having cross- disciplinary conversations about the capacities of organisms to regenerate, adapt and continue

215 H. Pynor, ‘Interview with Helen Pynor’ [interviewed by Bec Dean], 29 March, 2017. 216 Max Planck Institute for Molecular Cell Biology and Genetics, ‘Jochen Rink’, CBG, 2018, https://www.mpi- cbg.de/research-groups/current-groups/jochen-rink/group-leader/#c992, (accessed 14 July 2018).

125 to live. From this residency, Pynor was able to create video documentation of the chicken cells dividing, which were used in the exhibition.

From my perspective as a curator, my ability to travel to the Max Planck Institute in Dresden and accompany the artist as she performed tasks in different parts of the environment was important for several specific reasons: It enabled me to understand the regenerative cell biology techniques performed by the artist, and their aesthetic implications and possibilities. I could immerse myself in the laboratory context for several days and reflect on its ethics in relation to the use of animals. I documented the spatial design of the building and its use of architectural materials and the situation of apparatus for reference for exhibition design for

The Patient. I was able to support the artist in her development of ideas for future parts of the project, by drawing from findings of her work with living tissue, which I would not have been able to absorb through a simple viewing of work-in-progress dislocated from this environment. My observation of Pynor’s feeding her tissue cultures and monitoring the microscopy of the cells dividing, emphasised the commitment to care that artists sign-up for when they embark upon collaborations that result in, or involve living materials or organism.

While Pynor’s engagement with the laboratory ran over five months, it required her to fly repeatedly between London and Dresden to attend to the other aspects of her life. The artist says of this engagement with care:

There is a huge amount of care involved with the cells that are growing in tissue

culture. They become little beings, because my job is to care for them and nurture

them, and if I don’t constantly care and maintain them they die. So I become a

sort of custodian of these little, tiny beings.217

217 H. Pynor, ‘Interview with Helen Pynor’ [interviewed by Bec Dean], 29 March, 2017.

126

My ability to meet the artist in the context that she was working in, also enabled me to discuss the development of the work while witnessing the work in progress, as the ‘work’ itself was growing. This situated perspective, again using the language of Haraway, of being with the artist during the process of making, allowed us to conceive together, other facets of the project, with a shared knowledge of the shape that the project was already taking, practically, ethically and conceptually. It was in Dresden that I suggested Pynor work with performance makers, Branch Nebula, for the Rowan Thomas re-enactment of his near-death experience. This connection was made due to the discussion we were able to have about the

‘reaching’, ‘stretching’ movement of the cells in the microscopy footage. My engagement with Pynor in this biological research context, alongside my work with case study artists John

A. Douglas, Guy Ben-Ary and Eugenie Lee, gave me access to spaces that would normally be closed to me, and allowed me to develop an aesthetic literacy of the laboratory to apply to the design research for the exhibition. This transfer of artistic knowledge through my practice of embodied, attentive curatorial practice, demonstrates the reciprocity between artist and curator produced by this CPBR.

127

Figure 15: Helen Pynor, The End is a Distant Memory, 2016, video still showing performance-makers, Branch Nebula manipulating the body of Rowan Thomas. Photo: Helen Pynor.

My long-term working relationship with artists, particularly exemplified by Pynor and

Douglas, operates as a kind of mirroring that reflects the artist’s own occupation with engaging in long-term projects that unfold over several years. I become more knowledgeable of the processes, components, collaborations, concepts and aesthetics of their practices because they are realised longitudinally and require a more embodied, present and located means to stay connected to them. Pynor says of this relationship:

with curators, there is sometimes dialogue. Sometimes there’s very little dialogue.

The work arrives in the space and then the curator actively engages with how it’s

put out in the space, but you visited me in Dresden, and then in my studio in

London … you also engage with the personal lives of the artists you work with,

like what traumas are going on? What medical, personal, emotional … because all

of that informs the work. Also, there’s your willingness or your generosity to keep

128 dialoguing, keep conversation going about even the works that you’re not

formally curating.218

Pynor’s quote demonstrates the importance of our continuing discourse, through and around projects, where I continue to follow the narrative of her practice through my longitudinal care for her and her work. My case study of Pynor’s work for The Patient draws together a range of issues around care, ethics and relationships across art-making, curating and presentation from the biomedical. Pynor’s faceted, multi-perspectival practice, invites audiences and viewers of her work to draw connections between seemingly disparate images and subjectivities, representing the living, the dead and the in-between. The work thus further complicates the dualism of the object/subject by also calling into question the dualities of alive/dead and animal/human that are qualities of lively materialism. In terms of my curating, the longitudinal, research-based, materially diverse and situational nature of Pynor’s artistic process, has influenced the methodology of my practice towards care.

218 H. Pynor, ‘Interview with Helen Pynor’ [interviewed by Bec Dean], 29 March, 2017.

129 4.4 Case Study 3: Guy Ben-Ary

CellF is installed on the raised stage of the National Art School’s Cellblock theatre. It is a black, mechanical presence, taking up the centre of the platform and illuminated coolly. The building itself is long and rectangular with a rounded end where the stage is. It was built by convicts to house convicts in the nineteenth century, and the traces of its prison cells and staircases can still be made-out in the walls, along with the crude etchings of inmates marking-off time. The rough-hewn sandstone walls have fairly good acoustic properties, they are not too reflective, and we need this with a 14-speaker array installed around the space where the audience will stand.

Tonight, percussionist Claire Edwardes and clarinettist Jason Noble are playing with cellF, while Guy Ben-Ary and the rest of the cellF team stand by to open the reception and transmission relays—the synthesisers—between the artwork and the two musicians. When

Edwardes begins her improvisation with cellF, she does so with a careful progression through her many instruments, which she builds with complexity as the feedback from the neural stem cell cluster becomes more responsive. At one point interrupting the cascade of notes on her xylophone, the musician thumps a single, loud beat on a drum, and cellF seems to roar back a response which makes the room gasp.

The sound of a collective drawn-in breath and the tingling feeling that something unexpected happened fills the room. I look around at others to clock their surprise and we share the uncanny sensation of being in the presence of something alive but not yet human.

130 The second performance of cellF in Sydney for The Patient on 11 June 2016, will remain the most alive in my memory because of this moment. It was in these few seconds where the potential for the artists’ disembodied cells to become agential or self-organising, crystallised in the minds and bodies of many people at the same time. As audience filling the room, we reacted viscerally and simultaneously to this information.

Figure 16: Guy Ben-Ary and collaborators, cellF, 2016, performance documentation at the Cell Block Theatre, National School of Art showing Claire Edwardes and Jason Noble performing. Photo: Rafaela Pandolfini.

In contrast to my close engagement with Helen Pynor, which has been enriched through constant and discursive conversations over many years, my work with Guy Ben-Ary has been more formally attached to exhibition outcomes, and confined to scheduled points of connection throughout his development of work with collaborators. This difference is due to the artist’s methodology, which is less focused on the unfurling of presentation possibilities

131 through experimentation and process, and far more oriented towards achieving aesthetic and conceptual goals established at the beginning of a project. In the case of the project cellF

(2015), this goal was the manifestation of a “Rock star in a petri dish,”219 a musical entity whose “brain” or lively component would be fabricated through stem cell culture processes, resulting in neural clusters that originate from a biopsy taken from Ben-Ary’s arm.

Figure 17: Guy Ben-Ary, cellF documentation, 2015. This image shows the artist resting following the biopsy for skin that was harvested to produce the neural stem cells for the project. Photo: Guy Ben-Ary.

In brief, Ben-Ary’s biopsied tissue was encouraged to continue to grow at the laboratory he works for at the University of Western Australia and then sent to a laboratory in Barcelona where it was induced to become stem cells through a process called Induced Pluripotent Stem

219 A. Taylor, ‘“Rock star in a petri dish”: Guy Ben-Ary harvests cells to create an external brain to play music,’ Sydney Morning Herald, 6 June 2016, https://www.smh.com.au/entertainment/art-and-design/rock-star-in-a- petri-dish-guy-benary-harvests-cells-to-create-an-external-brain-to-play-music-20160606-gpcvop.html, (accessed 14 July 2018).

132 Cells (iPSc). This material was then sent back to Perth for Ben-Ary to differentiate into neural stem-cells, which were then grown in dozens of petri-dishes on a device called a

Multi-Electrode Array (MEA). The MEA is like an electronic circuit that is able to capture the wet electronic impulses of the neural cluster, as well as deliver electrical impulses back to it. This two-way reciprocity between lively material and external data is something that Ben-

Ary has been working with for years, but cellF is the first occasion in which external communication has been transmitted to his own, disembodied and differentiated biological material, and back again.

The stem-cell clusters housed in their MEA petri-dishes is what Ben-Ary refers to as a

“brain”, a simplified term that enables audiences of his work to easily comprehend what takes place in cellF’s performances. This “brain” connected to a multi-input synthesiser and an array of speakers, also received an input from external microphones, which means that it can effectively ‘jam’ with other musicians. For The Patient, cellF was represented by process- based documentation of the project, and three live performances of the work, with noted contemporary Australian musicians, at an external site to the gallery, as part of the exhibition’s live programs.

I started discussions with Ben-Ary about being involved in The Patient because of his shift from working materially with laboratory animals, to working with his own bio-materiality following the provocation of an artist friend, Boryana Rossa, with whom he also co-authored the work, Nervoplastika (2014), the first of his collaborative projects to use neurons derived from his own body.220 I was interested in including cellF in The Patient because of Ben-

220 S. Bell, Guy Ben-Ary: ‘The Work of Accelerated Fastness’, in Kluszczynski, Nervoplastica, exhibition catalogue, Gdansk, Laznia Centre for Contemporary Art, 2015, p. 128.

133 Ary’s engagement with a medical process to initiate this work, and therefore his forging of historical connections back to artists including ORLAN, Stelarc, Mona Hatoum and Marc

Quinn, who have utilised elective medical procedures to variously extend the human body outside of its given proportions, or to expand its representational potential, its morphology or its longevity. Due to Ben-Ary’s established practice and networks within the research science community, and his ability to work with leading-edge science processes to create the living foundations of his work, I was also interested in what this ability proposed—in a speculative sense—towards the agency of the medical patient within the medical realm. Here is the artist, a short-term subject of medical intervention, caring for his own biomateriality across the object/subject duality, within a biomedical research context, for artistic purposes.

It was the particular attention to care for lively materials in this project that was of most interest to me in terms of my research into curating and care. The daily care that is focussed on the multiple ‘brains’ that Ben-Ary has produced which continue to live outside of his body. While the artist was a considerably shorter-term patient than many of the artists represented in the exhibition, the methodical care of his own stem cell clusters has extended over several years, and still continues as the work is taken on tour internationally. As Ben-

Ary states:

This project is an embodiment. We embody the neurons. But it’s my embodiment

as well as a person in the lab, you know I mean there’s a lot of care, there’s a lot

of time that goes into that. I’m starting to think about myself as a facilitator, more

than anything else, you know, kind of creating this platform for them (the brains)

to perform.221

221 G. Ben-Ary, ‘Interview with Guy Ben-Ary’ [interviewed by Bec Dean], 1 October, 2016.

134

This level of care is made possible by Ben-Ary’s employment at CELLCentral at the UWA

School of Anatomy and Human Biology, and his ability to ‘feed’ the neural clusters daily— without which, the realisation of such a complex, long-term work would be impossible. One of the practical provisions for showing cellF in contexts that are not close to Ben-Ary’s laboratory, is for a host laboratory to receive and grow the neural clusters several weeks in advance of the performances. Care is distributed by the artist through the instructions that he supplies to other scientists, by travelling with the stem cells to their destination.

Figure 18: Guy Ben-Ary and collaborators, cellF documentation, 2015, installation at UNSW Galleries, 2016. The background montage of images shows the process of converting the artist’s skin to neural stem cells, as well as the other creative processes involved in the work. Photo: Silversalt Photography.

135 While the use of his own neurological material—rather than those of mice or fish that have to die in order for their neurons to be harvested—responds to some of the ethical issues around the use of laboratory animals for art,222 the project deliberately throws up other more speculative ethics for the future uses of disembodied human tissue and neurons. At the heart of all of Ben-Ary’s projects using neurons and robotics, is the idea that a kind of reciprocity of communication can be established between the neural clusters and visitors or participants.

This is made possible by his configuration of digital and analogue interfaces between the disembodied material that he grows, and a robotic body, where the robotic makes possible the visualisation or figuration of the microscopic, lively neural activity. Ben-Ary states:

I mean basically it’s almost an aesthetic tool to kind of look at what’s happening

in a microscopic or invisible environment, and highlight the liveliness and then …

comes this narrative of embodiment—giving a body to a disembodied brain....

And the minute that you have this architecture, this narrative of the body and the

brain, you really want to look at biofeedback otherwise it’s not a body and a

brain.223

Typically, the robotic forms that Ben-Ary has worked with over the past two decades have been movement-oriented and created through the collaboration of artist, Phillip Gamblen.224

But the cellF host body is an analogue synthesiser and the dynamism of the activity of the neural network is presented sonically rather than mechanically. In performances of the work, there is also a different kind of embodiment that takes place in the transmission of sound

222 The primary source of nutrient that is ‘fed’ to the cells is still derived from foetal calf serum. 223 G. Ben-Ary, ‘Interview with Guy Ben-Ary’ [interviewed by Bec Dean], 1 October, 2016. 224 Phillip Gamblen was the primary collaborator on design of the host bodies or robotic infrastructures for Silent Barrage (2009) and MeART (2002).

136 created by cellF and its live musicians, to the audience. The array of sixteen speakers connected to cellF is arranged not in front of the audience, but around them, and the source of sound for each speaker can be traced to a particular part of the neural network’s Multi

Electrode Array. In this way, the activity of the neurons and their response to the musicians that ‘play’ with them can literally be powerfully felt through the bodies of the audience members.

Ben-Ary and his collaborators working on reciprocity between the semi-living and the consciously living, problematize the life-matter binary by calling into question the agency and sentience of disembodied (then re-embodied), lively cells. cellF gestures towards possible futures involving the cloning and genetic tailoring of future, multiple human selves towards specified tasks, talents, or virtuosities. In the context of The Patient, surrounded by the work of artists living with illness, undertaking operations, and representing the experiences of patient communities and of individuals, it points to a possible outsourcing and re-growth of the self as opposed to the experience of disease. In its performance though, its disembodied human liveliness is felt and experienced—actually vibrated—through other human bodies, emphasising a “shared materiality.”225

The longevity of Ben-Ary’s project and his co-authorship of the work with an array of collaborators including artists Nathan Thompson and Andrew Fitch, musician Darren Moore and scientists Douglas Bakkum, Mike Edel and Stuart Hodgetts, meant that I was able to engage with the artists across various milestones of the work in development: From observing the testing of an analogue synthesiser which would give the neural clusters a voice,

225 J. Bennett, Vibrant Matter: A Political Ecology of Things, Durham, NC, Duke University Press, 2010. p. 13.

137 to giving feedback to early designs for the instrument/musician, to listening to Douglas

Bakkum discuss the potential behaviours of the neural stem-cell clusters. The process of making, through facets of testing, learning and accruing knowledge in this work, hinges on the confluence of partial perspectives, from widely different fields, communicating across language that is highly specific to particular disciplines. The existence of cellF very much aligns with Haraway’s vision of a network for knowledge-making.

cellF brings into sharp focus for my research, ideas of care around lively materials and curatorial care for these materials as well as the artist, from whose body they stem. The time and patience taken by Ben-Ary to grow this material and keep it alive is measured in terms of years, whereas the performative life of his cells outside the specific environment of the lab may only be hours or days. The practical engagement of curating and care with this work, while focused on the arrangement of specialist support for the artist’s neural clusters, as well as sourcing a performance space with a suitable acoustic and aesthetic environment for presentation, has been enriched through my attentive, embodied engagement with the work through various key moments in its development, and observing the rigors involved in its collaborative manifestation.

4.5 Looking After the Living

We are now in a better position to name that other way to promote human health

and happiness: to raise the status of the materiality of which we are

composed.226

226 Ibid., p. 12.

138

In Jane Bennett’s Vibrant Matter (2010), from which this quote is taken, she seeks to broaden the definition of self, by looking at the heterogeneous composition of the body, as well as the lively objects and materials that flow around and through it. In this chapter, I have shown that

Biomedical Art, brings a human focus back into the practical spaces of the laboratory, which emerges partially from the field of Bioart. However, rather than finding a discrete focus on human experience, my research of artistic practice taking place in the laboratory reveals the human is inextricably entangled with the animal, the machine, apparatus, and performances of lively processes, as well as the hidden, self-organising systems of the body itself.

I have also taken a vital materialist lens to the entire exhibition to capture the expanded notions of self and body already in play in historical and recent representations of the patient subject. As a space devoted to the extension of life and restoration of health through therapeutic, mechanical, pharmaceutical, procedural, and even transgenic means, I show the medical context to be quite literally alive with matter, materials and objects. I have addressed my curating methodology and situational and material attentiveness to artistic projects in development, wherein I identify Biomedical Art as spanning across scientific, artistic, social, and personal domains. Here I detail the need for my curating to recognise the care that artists take towards their materially lively projects.

I have presented case studies of Helen Pynor and Guy Ben-Ary whose new projects, The End is a Distant Memory (2016-2017) and cellF (2015) were respectively commissioned and supported through my development of The Patient exhibition. Through my analysis of these works, I have shown how the different collaborations bring numerous other participants, objects, and different vital materials into play, and engage with the complex ethics around the

139 use of both human and animal material in science and art. I have focused on the experimental ways in which these artists work collaboratively with research scientists to realise complex, longitudinal artworks, bringing multiple perspectives and forms of disciplinary knowledge together as an accrual of partial perspectives, in Haraway’s terms, towards a particular artistic outcome. This CPBR presents Biomedical Art as a field of practice formed around collaboration in diverse areas of knowledge, in which artists become carers for lively objects and materials that may stem from themselves or from others.

Collaborations between artists and scientists and vice versa create new fields for cultural production and discourse, in which disciplinary difference and knowledge-sharing becomes the foundation for mutual engagement. As such, the work undertaken at these meeting points is highly speculative and experimental, and the full scope of potential outcomes may change and unfold over a long period of time. To carefully attend to artists at various stages as they navigate through these projects, exposes my own curatorial practices to a range of contexts, ideas and experiences, which would otherwise be hidden if my work were more utilitarian and distanced. My methodology of situational and material care, enables me to recognise artists as carers, and to mobilise my curatorial attention on facilitating their particular, specialist care for lively artworks and live subjects.

In this way, my curatorial practice, engaging with an emerging interdisciplinary field, expands upon the foundations of traditional, institutional curating. The practice retains and builds upon the knowledge of care for objects, in recognising that some objects are lively. In my final chapter, Care and the Visitor, I engage with Biomedical Art in a participatory mode, and how curatorial care is extended to the people experiencing it.

140 5. Care and The Visitor

Through my historical and contextual analysis of artists’ practices and the artist case studies in Chapters 3 and 4, I have attempted to build a picture of a field of artistic enquiry— culminating in Biomedical Art—that seeks to bring the under-examined nature of medical patient experience into public discourse. Chapter 3 concluded with a case study on the practice of John A. Douglas and his interpretation of kidney disease and transplantation through the use of sites, mythologies and symbols that render his body as both alien and alienated. The case studies of Guy Ben-Ary and Helen Pynor in Chapter 4 detailed their use of human and animal materials, respectively, for life-extending processes that are not commonly appreciated outside of the laboratory context. The curation of these works and others for group exhibition, configures images, sounds, inferences, and experiences together that would be otherwise isolated and excluded from daily life. The Patient exhibition represents detailed surgical procedures, laboratory experiments involving living material, exposed and altered human bodies, and intimate encounters with sex and death that broach taboos. I researched and implemented engagement strategies for visitors and audiences with these challenging factors in mind. The exhibition deliberately draws visitors into the contemplation of extreme human experience, and creates opportunities for supportive reflection upon them.

The presentation of marginalised experiences and potentially contentious material are concerns both for visitor interaction and maintaining respect for artists whose bodies and lived experiences are on the line. In this way, I acknowledge that the ‘medical gaze’ discussed in Chapter 3.1, also extends through to society and public consciousness. Through my analysis of the exhibition design of The Patient and its lively, participatory public programs, I will show in this chapter how curatorial practice can provide supportive

141 scaffolding for difficult art encounters which acknowledges the medical gaze, privileges the patient perspective and facilitates the sharing of knowledge and aesthetic experience. I also address how the exhibition engages with visitors and audiences, and the ways in which care through my attentive curatorial practice is extended to them.

Curatorial care as it relates to visitor experience is approached through my second research question:

How does curating Biomedical Art and art work engaging with the artist-as-patient and the medical patient subject, expand the concept and practice of care in curating?

Given that the development of Biomedical Art is undertaken in different disciplinary areas such as hospitals, clinics, museums and laboratories, my question for curating begins with the notion that the exhibition and gallery could or should also manifest aspects of these intersecting environments, recognising and drawing upon their impacts on artists and artistic practice for the benefit of visitors. Should not the creation of interdisciplinary, collaborative artwork anticipate the curatorial need for an exhibition environment and public program to conceptually, aesthetically and ethically correspond to its ideas and intentions? In this way, the interdisciplinary characteristics of Biomedical Art practices hold the potential to be communicated to visitors across a number of vectors including exhibition design, interpretation and discourse as well as their primary interaction with the selected work. My attention to visitor experience detailed through this chapter is shown to be mobilised through material, conceptual and receptive forms of care.

142

5.1 Conceptualising the Visitor

Over the last three decades, numerous artistic and curatorial trends and discourses have changed the ways in which communities, audiences and gallery visitors are conceptualised and attended-to in relation to curatorial practice and exhibition-making. Relational

Aesthetics, Institutional Critique, socially-engaged art practices, and the analysis of evolving orthodoxies around public participation in art have changed perceptions of the gallery visitor as a passively absorbing cultural consumer. These ideas run parallel to wider discourse across

New Museology, which has broadly identified the museum visitor as the dominant focus of contemporary institutional activity, and the museum as a “medium for communication” with visitors.227

The transition of institutional ‘care’ from collection object to living subject in the museum context has been the focus of museum practice and subject of many publications on contemporary or ‘new’ museology since the 1990s.228 In Lois Silverman’s The Social Work of Museums (2010), she states that “museums today should be fostering cultures of caring as well as caring for culture.”229 Silverman’s “expanded vision” for museums to be “more responsive and more relevant to society”230 aligns with the ethical and social dimensions of an exhibition seeking to champion the work of artists whose practices emerge from taboo subjecthood, stigma, societal banishment, misrepresentation and shame. This is a leading rather than underlying characteristic of The Patient.

227 E. Hooper-Greenhill, Museums and their Visitors, London, Routledge, 1994, p. 3. 228 E. Hooper-Greenhill, Museum, Media, Message, London, New York, NY, Routledge, 1995, p. 2. 229 L. Silverman, The Social Work of Museums, London, Routledge, 2010, p. 39. 230 C.B. Ocello, ‘Being responsive to be responsible Museums and Audience Development’, in Marstine, J. (ed.), The Routledge Companion to Museum Ethics, London, Routledge, 2010, p. 188.

143

Claire Bishop underscores in Artificial Hells (2012), that this desire “to rethink art collectively” is connected to more expansive social and political movements, recurring at different moments in contemporary (European) history.231 If we follow a Foucauldian approach to this notion of a shared set of desires, we find a set of conditions that make possible the overturning of traditional disciplinary relationships and hierarchies taking place around a similar timeframe in the late 20th Century; between artists and audiences, museums and visitors, as well as between hospitals and patients. In Eilean Hooper-Greenhill’s historical analysis of the museum, Museums and the Shaping of Knowledge (1992), she writes “now knowledge is structured through a three-dimensional, holistic experience which is defined through its relationship to people … Where both the object and the curator are decentred and the visitor/client/customer has new opportunities.”232

In curating The Patient, I have become immersed in work that engages with societal imbalance around the awareness and understanding of illness and a range of medical patient experiences. As a project deliberately presenting marginalised experiences and social issues, the exhibition feeds into wider discourse on the social work and the social ‘good’ of exhibitions, and the capacity for social transformation through art and visitor engagement with cultural institutions.

Through my research into other curatorial and artistic projects engaging with medicine, I have found similar statements of purpose and intention expressed for reaching audiences to change their perspectives. On the one hand, curators acknowledge that works by individual

231 C. Bishop, Artificial Hells: Participatory Art and the Politics of Spectatorship, London, Verso, 2012, p. 3. 232 E. Hooper-Greenhill, Museums and the Shaping of Knowledge, London, Routledge, 1992, p. 214.

144 artists-as-patients, or with patient subjects, are intimate and deeply personal, and that they should be held as precious and inviolable. On the other, they simultaneously assert the opportunity held in public exhibitions for collective redress of misrepresentations, stigmas, and aspects of human life that are hidden from mainstream society.

For Ted Gott, showing another side to the representation of the AIDS epidemic by a “lurid and voyeuristic press” was central to the concerns of his exhibition Don’t Leave Me This

Way: Art In The Age of AIDS (1994 TK) at the National Gallery of Australia. In his introduction, he wrote:

While the Australian public now knows more than ever before about gay men and

their lifestyles ... few people have any real consciousness of the searing impact

that repeated witnessing of death, anguish, and physical suffering has had on

Australia’s gay communities.233

An international reviewer of the exhibition, Douglas Dreishpoon, remarked that the exhibition “turned out to be a vehicle for mass catharsis, grieving and hope.”234 In receiving exhibition documentation from the gallery for his research, he was provided with a copy of a visitor’s book that revealed that individuals had profoundly life-changing experiences in the context of the exhibition, even acknowledging and overcoming their prejudices.235 Showing

233 T. Gott, Don’t Leave Me This Way: Art in the Age of AIDS, Canberra, ACT, National Gallery of Australia, 1994, p. 4. 234 D. Dreishpoon, ‘Art's revenge in the time of AIDS’, in Art Journal, vol. 54, no. 4, 1995, p. 90, https://search.proquest.com/docview/223306743?accountid=12763, (accessed 29 June 2018). 235 In his review, Dreishpoon includes the following statement from the visitor’s book: “I have never known anyone with AIDS, but I have imagined and realized how close everyone is to it every day. Homosexuality frightens me, perhaps because of AIDS. I have always kept myself protected from all these things (i.e., drugs and unsafe sex) and so I hope I am immune to being hurt from it. But I love all people (OR TRY TO BE UNPREJUDICED though it is hard). I’m glad I forced myself to see this exhibition. People need to know what’s

145 the intimate, human side of a difficult health and social issue in order to change people’s minds, and to have a direct impact on the thinking and behaviour of visitors, was a clear intention and outcome of this exhibition.

In the catalogue essay for Helen Ennis’ exhibition Reveries: Photography and Mortality

(2007), held at the National Portrait Gallery of Australia, the curator wrote about representing intimacy, in order to reflect on what is shared in our experience of being human:

In each case it is an individual’s life—the sum of a unique set of experiences—

that is being represented ... However, in my view it is also necessary to attend to

the photographs as a form of collective expression and to consider the main

preoccupations and patterns that emerge from them as a group. Chief among these

is the desire to deal visually with profound aspects of human experience, to make

images that will communicate some fundamental truths.236

In the context of an exhibition engaging with a taboo and underrepresented topic, visitors may come armed with misconceptions, fuelled by misrepresentations that are normalised in everyday language237 and through prejudices that are socially ingrained—including the persistence of the medical gaze.238 The Patient presents artworks, projects and events that challenge this dynamic and offers alternatives to diagnostic or judgemental perspectives on the art and artists involved in the exhibition. In presenting The Patient I deliberately designed

going on. Things have changed. We must face our fears and accept everyone. Thank you for keeping me in touch with reality.” Ibid., p. 91. 236 H. Ennis, Reveries: Photography and Mortality, Canberra, ACT, The National Portrait Gallery, 2007, p. 6. 237 S. Sontag, Illness as Metaphor and AIDS and its Metaphors, New York, NY, Doubleday, 1990, p. 57. 238 M. Foucault, The Birth of the Clinic: An Archaeology of Medical Perception, New York, NY, Vintage Books, 1994, p. 89.

146 the exhibition to bring in the different disciplinary perspectives of Biomedical Art. I created a public program with talks, performances, workshops, forums, film screenings and on-site activities to charge the exhibition space with liveliness, activated across the duration of its timeline. The exhibition as context for aesthetic experience with a ‘life-cycle’, aligns with my intention to connect visitor experience with life: the lives and lived-experiences of medical patients and the artist-as-patient in Biomedical Art. My attentive curatorial methodology brings visitors inside this dynamic, acknowledging the people at the centre of the exhibition, their experiences, and the mortality and tenuous grasp on health that we all share.

Caring for the Artist and the Visitor

“AJ: Our society has no forums or contexts to even discuss pain, death or sex. You provided an amazing environment for people to just be free to talk -

BF: that’s true: to provide a place where people could be hypnotized by honesty. We’re used to keeping secrets, being lied to, and not talking about certain topics. All I ever try to do, in my writing and in my shows, is state everything that happens as plainly and honestly as possible, yet with some sort of craft - to be entertaining and funny too.”239

In this excerpt from an interview with Bob Flanagan by Andrea Juno, published by the 1990s counterculture book series, Re:Search, the artist and interviewer discuss Flanagan and Sheree

Rose’s ground-breaking exhibition, Visiting Hours (1993), in its original iteration at the Santa

Monica Museum of Art. The exhibition was inhabited by Flanagan every day during gallery opening hours, where he occupied a constructed space in the middle of the exhibition that replicated his hospital room, replete with medical equipment and personal ephemera. Across this time, Flanagan unintentionally became a supportive agent for visitors, their emotional

239 A. Juno (ed.), ‘Interview 5’, in Bob Flanagan: Supermasochist, New York, NY, Ira Silverberg, 1993, p. 99.

147 reactions to the exhibition, and a listener to their fears and experiences of illness.240 The confessional element of Flanagan’s personal engagement with visitors, tapped into a need from the visitor to talk and ask questions about issues that remained taboo.

As a live performer, Flanagan was the living centre of Visiting Hours, engaging directly with visitors and bringing them inside the exhibition’s vital discourse. The exhibition—although unwittingly, from Flanagan’s documented perspective—shares characteristics with participatory modes for audience and community engagement that started to become commonplace across both contemporary creative practice as well as in museum contexts throughout the 1990s and the early 2000s.241 In this period, artists, curators and institutions were developing exhibitions and events with the anticipation of meaningful social outcomes.

The idea that an exhibition could be a ‘forum’ or ‘environment’ in which critical issues could be collectively examined, was being scrutinised from different philosophical and practical positions and for different purposes. As Claire Bishop writes in her critical analysis and history of participatory art, Artificial Hells (2012), since the 1990s there has been a “shared set of desires to overturn the traditional relationship between the art object, the artist, and the audience.”242

As the curator of a project that seeks to place the visitor into a closer relationship with questions of illness and patient subjectivity, conceiving of and delivering holistic, supportive structures that facilitate both the visitor’s encounter with artworks and their acquisition of potentially new knowledge was a significant issue for my research. In the case of The Patient and my commitment to ‘care’ the material, supportive structures for encounter and

240 Ibid., pp. 98-99. 241 C. Bishop, Artificial Hells: Participatory Art and the Politics of Spectatorship, London, Verso, 2012. 242 Ibid., p. 2.

148 interpretation do not only need to service the visitor, but also the artists who are—like

Flanagan was in a very literal way—the people whose lived experience is at the centre of the exhibition experience. As Petra Kuppers questions in her book on medical performance in contemporary art:

Who needs to know what, what mechanisms are in place for this knowledge, and

what other mechanisms need to be employed to undo some of the certainties,

some of the labelling and identifications that are the currency of medical

diagnosis?243

This quote by Kuppers invokes the medical gaze and its diagnostic tendencies, and highlights the importance of considering human ethics in exhibition-making around stigmatised subjects. While sharing knowledge, experiences and ideas with visitors and audiences is a priority for curatorial projects engaging with marginalised experience, this sharing should be undertaken with conceptual and emotional care in attending to both the needs of artists as well as audiences.

243 P. Kuppers, The Scar of Visibility: Medical Performances and Contemporary Art, Minneapolis, MA, University of Minnesota Press, 2007, p. 3.

149 5.2 The Visitor and the Medical Gaze in The Patient

Addressing the medical gaze in relationship to the gallery visitor for The Patient, unfolds across various forms of curatorial labour including the selection of works, the exhibition design and in the production of the exhibition’s public program. In thinking about “the visitor” and “audiences” for The Patient, I position them as participants in the broader systems of the medical/health complex addressed in the exhibition as well as participants in the cultural systems of which the artists, their works, and the gallery itself are all a part. They are implicated in Foucault’s conception of the “medical gaze”, which serves as a touchstone for thinking about how power is distributed and implemented throughout the exhibition and through the institutional systems critiqued and confronted by the artists in the exhibition.

Foucault’s work on the nature of subjectivity encompasses the “social divisions brought about in the name of madness, illness, and delinquency, along with their effects on the constitution of a rational, normal subject.”244 Madness and Civilisation (1961), The Birth of the Clinic (1963), and Discipline and Punish (1975) presented “effective”245 histories that showed the development of the subject “as a possible, desirable or even indispensable object of knowledge.”246 In terms of the medical gaze, this ‘object’ changes shape and focus through a sequence of different classificatory systems over time and place, 247 but always resides in

244 M. Foucault, ‘Ethics: Subjectivity and Truth’, in The Essential Works of Foucault, 1954–1984, Rabinow, P. (ed.), New York, NY, The New Press, 1994, p. 88. 245 In Museums and the Shaping of Knowledge (1992), Eilean Hooper-Greenhill writes about Foucault and Effective History as opposing “the pursuit of the founding origin of things, and a rejection of the approach that seeks to impose a chronology, and ordering structure, and a developmental flow from the past to the present.” E. Hooper-Greenhill, Museums and the Shaping of Knowledge, London, Routledge, 1992, p. 10. 246 Ibid., p. 87. 247 Systems such as nosology, epidemiology, pathology, anatomy and physiology, psychology and the classification of tissues are examined in this history, focused on the 18th and 19th centuries, leading to 20th Century anatomo-clinical perception.

150 and around the body of an ill person (it is important to point out that the “rational, normal subject” is also an identity in a constant state of flux). The “calculating”248 nature of the medical gaze as defined by Foucault, separates a person’s body from their individuality, and is replicated on a cultural level through the separation of the patient from society, where the patient is “enveloped in a collective, homogenised space,”249 the institutional space of the hospital or clinic. In some ways, my curation of The Patient is concerned with retrieving this subject/object of knowledge from medical cloisters, and situating them in a public form of discourse. But this act of retrieval is done in cognisance of the operation of the medical gaze.

Foucault’s claim that “Power relations are both intentional and nonsubjective,”250 plays out in the gallery context and throughout its public programs, where individual agency—of artists, patients and visitors—can be viewed against the shifting social constructs of prohibition, stigmatisation and marginalisation. In some works, institutional power is directly questioned, and in others, the agency of the artist in manipulating the (literal) operations of the institution is emphasised. In the context of the gallery, this contest is quiet and contained to the experience of the visitor navigating the exhibition design and the selection and placement of works in spatial associations. In programmed moments of discourse, or through performative and interactive works, a shared or collaborative examination of power relations (and what to do about it) can be undertaken.

The conundrum of replicating the othering tendencies of the medical-health complex by creating an exhibition centred on patient experience, where literal objects occupy the gallery

248 M. Foucault, The Birth of the Clinic: An Archaeology of Medical Perception, New York, NY, Vintage Books, 1994, p. 89. 249 Ibid., p. 196. 250 M. Foucault, The History of Sexuality, Volume 1, New York, NY, Random House, 1990; 1978, p. 94. I understand this to suggest that power can be exerted from a particular source, but it can also have no particular target, and therefore it is not simple to map or locate.

151 space, is a tangible curatorial concern in The Patient. The exhibition presents images made in the late 1970s, which very much convey a sense of patient isolation and exclusion, alongside participatory contemporary art practice that collapse the distance between patient and

“normal” subject.251 A follow-on from my research question concerning Biomedical Art as an emerging field, is whether it creates mutually useful discourse between art and medicine. In some ways, it progresses the hopeful statement at the end of Foucault’s history of the clinic, that, “The possibility for the individual of being both subject and object of his own knowledge implies an inversion of the structure of finitude.”252 In The Patient, the artist-as- patient embodies this potential for knowledge creation, connecting with audiences beyond the medical-health complex. In The Patient, artists-as-patients may accept diagnosis and treatment, but they push forward with this medical and embodied knowledge in their own creative responses to illness. In the case of Bob Flanagan and Sheree Rose, their projects extend beyond the death of Flanagan, into collaborations with other artists.

Challenging the Medical Gaze

Identifying, for the benefit of visitors, the existence of a cultural and social division between the ill and the well, and challenging the othering tendencies of the medical gaze, are addressed in The Patient through all of the means at my disposal, as curator. These include: the design and use of the gallery space and facilities outside of the main venue at UNSW

Galleries; the creation of a public program including talks, symposia, and live interviews with artists; the presentation of didactic material; the creation of a resource area, library and interactive tools; the publication of a catalogue and the selection of the works themselves.

251 Here I am referring to Carol Jerrems’ photographic documentary work in Hobart Hospital Series (1979) in contrast to projects such as Seeing is Believing (2016) by Eugenie Lee that are participatory and work with interactive forms of new media. 252 M. Foucault, The Birth of the Clinic: An Archaeology of Medical Perception, New York, NY, Vintage Books, 1994, p. 197.

152

Several artists included in The Patient reflect and subvert the medical gaze by offering up images of their bodies to the judgemental gaze of other people. In these cases, acquired cultural and social tendencies towards objectification are countered by deliberate acts of performative subjectification. Jo Spence “examined the patriarchal constructions of femininity by exploring the changes” in her body.253 Artists bringing their individuality back into play in the same frame as their medical objectification is a clear repudiation of the medical gaze. Throughout the exhibition, artists in different timeframes and from a variety of social contexts have used strategies in the making of their work that consciously address issues of patient marginality and objectification, or do so through the representation of a system that is demarcated by exclusionary or prohibitive signifiers. Hobart Hospital Series

(1979) by Carol Jerrems and Narratives of Dis-ease (1990) by Jo Spence, are both projects that directly address the clinical gaze of the physician, and in the case of Spence, in its social manifestation. In Jerrems’ work, we see examples of the division between patient and medical staff conveyed through apertures and enclosures within her photographs of hospital architecture—the internal life of the patient contrasted with the exclusive and impenetrable environment of the medical practitioner. Spence represents her othering as ‘MONSTER’ in her work Narratives of Dis-ease by revealing her post-operative breast and daubing her body with a word suggesting a more ancient, but persistent perception of disease and infection— particularly of women—as being a symptom of moral decline.254 Spence wrote:

In these photographs is the beginning of a ‘subject’ language, one which allows

me to start the painful process of expressing my own feelings and perceptions, of

253 A. Jones, Performing The Subject, Minneapolis, MA, University of Minnesota Press, 1998, p. 186. 254 S. Sontag, Illness as Metaphor and AIDS and its Metaphors, New York, NY, Doubleday, 1990, p. 58.

153 challenging the ‘ugliness’ of being seen as Other. In doing so, I cease to be a

victim, becoming again an active participant in life ... Breaking out is not a

painless process for anybody. In cracking the mirror for myself, I am

automatically challenging your view too.255

Of course, it is not only ‘the gaze’ and visual perception, operating between people with different experiences of the world, but the language that accompanies it. In Illness as

Metaphor (1978), Susan Sontag addressed the use of militarised language in the description of medical treatment for cancer, as well as in describing the behaviour of patients. Fighting, battling, attacking and invading are all terms deployed in the arsenal of words that demarcate the ill within a particular “struggle” outside of the banalities of “normal” life.256 David

McDiarmid’s work Rainbow Aphorisms (1994) converted the conciliatory, glib language around illness into high-camp parody, “an exemplar of the gay male cultural habit of laughing at situations that are horrifying and tragic.”257 His aphorisms, printed in vivid, rainbow colour, cut through sentimentality, invite laughter and forge a closeness with viewers, especially in the context of The Patient which surrounds visitors with representations of marginalised bodies. As David Halperin writes in McDiarmid’s monograph:

You also invite others to share in your renunciation of any automatic claim to

social standing, and you encourage them to join you in the ranks of people whose

suffering is always subject, at least, to de-valorisation.258

255 J. Spence, Cultural Sniping, London, Routledge, 1995, p. 134. 256 S. Sontag, Illness as Metaphor and AIDS and its Metaphors, New York, NY, Doubleday, 1990, p. 57. 257 D. Halperin, ‘Agonies of Hilarity’, in When This You See, Remember Me, Melbourne, VIC, National Gallery of Victoria, 2014, p. 137. 258 Ibid., p. 138.

154 While the works of Jerrems and Spence are realised through the more traditional and recognisable representational forms of photomedia in documentary photography and self- portraiture, I included a more recent example of participatory documentary practice by Tim

Wainwright and John Wynne. Where Jerrems and Spence address the medical gaze on its own terms—Jerrems by revealing the structures of power in the hospital environment, and

Spence by offering her own medically damaged body as object for scrutiny—Wainwright and

Wynne worked in the context of the Harefield Hospital in London for a year, on the hospital’s invitation. Their collaborative work Transplant (2008) was developed through a sustained and reciprocal engagement with patients and their hospital environment. The form of the work is a slideshow featuring portraits, details of medical machinery and structure, and textures of the hospital decor, but is dominated by an audio track. Wynne’s sound accompanies the play of Wainwrights photographs, conveying not only the thoughts and feelings of the work’s participants, but the acoustic ecology of the hospital itself. The beeps, alarms and overwhelming drone of the environment becomes an atmosphere that is absorbed while viewing the work, and becomes the foil to an analytical or calculating engagement with the images, which are themselves fragmentary and fleeting in nature. In the exhibition—due to the penetrating nature of sound—the hospital drone intersects with other works.

In the curation of contemporary and recent work for the exhibition, I selected works that do not necessarily use visual forms of representation, but instead invite visitors to temporarily occupy the position of the patient, ‘other’ body or subject. Specifically, the kinetic sound sculpture, A-Part of Me (2013) by Ingrid Bachmann is a tactile and highly synthetic-looking pair of objects that bear no resemblance to the human form, but transmit very human experiences into the bodies of visitors through electronic stimulation. Using Arduino motors

155 and bone transducers, Bachmann’s interviews with transplant recipients are conveyed by these objects into the bodies of visitors through a transducer speaker that uses the vibration of a tiny metal plate to transmit sound as vibrations through bones. This means that the words spoken by Bachmann’s subjects reach the eardrum of those that interact with the objects by placing the transducers against the bones of the face, rather than through the ear canal. In this way, the visitors’ bodies become part of the structure for conveying patient stories, thereby temporarily embodying them.

This engagement with visitors through acts or performances of physical embodiment, mediated by interactive technologies, is a key facet of the performance and virtual reality project, Seeing is Believing (2016) by Eugenie Lee, which is discussed at length later in the case study of this chapter. Inviting audiences to occupy the physical or conceptual space usually reserved for the patient in the medical context (and for the subject in the gallery context) was of vital importance to my curation of The Patient in terms of giving space to practices that seek to forge empathy between visitors and artists-as-patients. These practices create moments of attachment and make possible the exchange of “partial knowledge” between human beings.259

Sharing knowledge through Biomedical Art and the work of artists-as-patients with visitors and audiences was always a profound concern for my curation of The Patient. As I have identified in this CPBR, the problem of labelling work, describing it and thereby disclosing the illness of the artist-as-patient directly adjacent to their work, reinforces the perceptual, diagnostic structures of the medical gaze within the exhibition environment. In my design for

259 D. Haraway, ‘Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective’, Feminist Studies, Vol. 14, No. 3. Autumn, 1988, p. 583.

156 the gallery space, I decided not to include any descriptive text, curatorial or artist statements about artworks that would support the instantaneous medical assessment of artists by viewers, such as directly referencing their illness in text. Instead, the UNSW Galleries and I published and distributed free brochures to visitors consisting of an introduction by me, and brief biographical and descriptive information about the artists and their works, that would enable people to reflect on their exhibition experience in their own time (Appendix B). In terms of exhibition labels, I focused on making this basic information as accessible as possible to audiences by working with styles, font-sizes and heights suggested by the disability sector.

I commissioned The Patient catalogue (Appendix A) prior to the UNSW Galleries exhibition, and scheduled its launch for the final week of the exhibition season, in order to include photographic documentation, particularly of artworks by Helen Pynor, John A. Douglas and

Eugenie Lee, which were newly created. I commissioned three essays by three contemporary artists, who each have a unique perspective on Biomedical Art. Dr. Kirsten Hudson has been a collaborator of Guy Ben-Ary on previous projects, Dr. Brian Lobel is a performance artist whose work I describe in Chapter 2.2, and Dr. David Cross is a performance artist and curator whose engagement with his own body, particularly his gaze as “grotesque,” has formed the basis for a number of participatory performance installations.260 The exhibition catalogues were provided free to the touring venues for The Patient in 2017 and 2018 and were distributed to gallery visitors, for use much in the way intended as the brochure at

UNSW Galleries. The commissioned essays, and my own lengthier introduction in the catalogue, also served to deepen discourse around the project, and Biomedical Art, and create a legacy document for the exhibition, for everyone involved. In my conceptual and material

260 D. Cross, Some Kind of Beautiful: The Grotesque Body in Contemporary Art, PhD diss., Queensland University of Technology, 2006, https://eprints.qut.edu.au/16277/1/David_Cross_Thesis.pdf, (accessed 30 July 2018).

157 care towards discouraging the visitor’s diagnostic gaze in the exhibition environment, I have demonstrated how embodied CPBR can create solutions for exhibition interpretation that care for the artist and benefit the gallery visitor.

5.3 Museum, Laboratory and Clinic

Due to the nature of Biomedical Art as interdisciplinary, I initially conceived of The Patient as a hybrid form of exhibition and touring program, situated conceptually at the intersection of the museum, the laboratory and the clinic. In this space, the object-oriented, knowledge- sharing characteristics of the museum; the collaborative, experimental and speculative propositions of the laboratory; and the interactive, human-to-human connections of the clinic could coalesce around the subject of the medical patient in Biomedical Art. This concept was developed as a reflection on my attentive curatorial research with artists, active within these disciplinary environments.

The original diagram I made for this model situated the exhibition at the narrow intersection of these institutional contexts:

158 Figure 19: Bec Dean, The Patient Venn Diagram 1, 2016. Showing my intention to develop the exhibition as a hybrid context.

Researching an ontology for Biomedical Art, including its different historical lineages—body art, performance art, Bioart, documentary photography, and social activism—culminated in my inclusion of the work of historical artists into the exhibition. This dimension of historical and cultural analysis of medicine from the perspective of the artist-as-patient, reoriented my original rationale. The work I considered as new, interdisciplinary and biomedical, was exhibited in relation to a past that was still exerting its influence on the present. Established power structures, the medical gaze, stigma, taboo, emotion, trauma and catharsis also converged in this focus on the patient body through the addition of works by Carol Jerrems,

Bob Flanagan and Sheree Rose, Jo Spence, Brenton Heath-Kerr, David McDiarmid, and

ORLAN. This artistic research situated the patient subject, artists, visitors and my own self

159 within a living system of relationships between institutions, disciplines, people, and materials.

My diagram for the exhibition shifted in the course of my research to position the contemporary, Biomedical Artist operating at centre of these interstices, while I widened the brief of The Patient to incorporate work that may not intersect in all three of these spaces.

This revised diagram incorporates all of my research interests and contexts as curator into the remit of the exhibition, while demonstrating the artists’ focus on their own projects and their specific outcomes at the nexus of these areas:

Figure 20: Bec Dean, The Patient Venn Diagram 2, 2016. Showing the expansion of my curatorial remit and my placement of the artist at the centre of interdisciplinary contexts.

160

Reconceiving of the exhibition itself as a context that holds the conceptual elements of the museum, laboratory, and clinic—rather than existing in the specific range of their intersection—reinstates the artist as central figure within these realms. It also incorporates the scope of curating and programming activity taking place within and outside of physical institutional spaces. The Patient exhibition season was programmed for visitor activity with a very tangible life-cycle in mind, including regular moments for participatory visitor engagement that would activate the exhibition space beyond opening night, discourse with artists, health and medical specialists, and also An Ending in which the dead were ceremonially remembered. Acknowledging the exhibition environment as a lively space aligns with my curatorial focus on the entire life-cycle of an artwork, as well as the practice of working attentively with artists through the longitudinal care for their artworks.

This revision of the exhibition shows another practical and conceptual outcome of my situational care for artists across the timelines and specific contexts of the development of their works. In creating an exhibition environment that reflects the aesthetics of the different disciplinary contexts I have engaged with, I act as an experiential surrogate for the exhibition’s audiences, who have not been invited into these different disciplinary contexts through the privileged access afforded to me as curator. In this way, the exhibition gestures further towards recognising the network of agents—scientists, patients, artists—integral to the making of these works. The result of my creation of a space with interdisciplinary references, was that visitors could also access aspects of scientific research, historical collections and literature from these disciplines.

161 At the heart of this notion—of the exhibition as lively space—is an acknowledgement that

Biomedical Art exists as a result of an ongoing, living system of relationships, where the past and present coalesce, while opening up a range of possible futures for thought.

Exhibition Design

The exhibition design for The Patient was developed in collaboration with artist and designer

Shahmen Suku, whose background study with a biomedical science degree laid a foundation for our shared comprehension of the aesthetic intersection of the science and humanities environments. Suku realised a modular design for walls, tables, plinths, and showcases that could tour and be reconstructed in different arrangements in each gallery. He adapted the characteristic forms of laboratory environments, including the use of metal construction materials reflecting utilitarian, industrial shelving. The design also utilised a visible sub- structure for walls and plinths, which allowed visibility through different artwork enclosures and spaces to other artworks, creating visual points of cross-reference, while retaining the autonomy of works from one another in the shared space. The sub-structures also referred to an anatomy of the gallery, revealing a connected skeleton beneath bright white, clinical- looking walls. The use of these structures in the space created visual and physical obstructions and narrow passages for moving through the exhibition. In this way, the exhibition layout actively avoided the classical display of installations through grand apertures and framings, and obscured a more distanced reading of the works, urging visitors into more intimate physical engagements with those works. The design also incorporated seating to accommodate the possibility for periods of rest and reflection for visitors, rather than an unbroken flow of experience.

162 A major part of the design brief was the construction of a library and research area for visitors, which combined a space for rest and further research after visiting the show. This area was populated by my collection of reference books on anatomy and medicine, books on art and medicine, and monographs about artists in the exhibition. The library area was furnished with chairs and tables to facilitate reading. This area also included a display of objects from medical culture that I researched for connections to each of the artists in the exhibition. Some of these were objects that now form part of my own collection, and others were borrowed from the Museum of Applied Arts and Sciences (MAAS) in Sydney. They included, prostheses, medicine, first aid materials, safe sex paraphernalia, scientific instruments, x-ray technology, teaching aids and anatomical models. I curated this element of the exhibition as an aesthetic response to the environments I was working in and visiting with artists. The objects were selected to provide visitors with symbolic, material reference points for each of the artists in the exhibition, and to offer a glimpse into the material culture that I was able to engage with throughout my research of the exhibition. From MAAS, I borrowed six items from their Medical Collection, with the support of curator Tilly Bolyen. This exhibit, The Patient Objects, reflected the influence of the lively objects of medical culture on artists themselves, and their absorption of laboratory and medical aesthetics into the presentation of their work. My curation of this space and its vitrines and shelves, allowed me to reference the contexts of museum, laboratory and clinic in which I had been researching with my case study artists. A list of the objects from the UNSW exhibition and the touring exhibitions can be found in Appendix C.

Suku’s modular exhibition design meant that the exhibition’s aesthetic could also travel with the artworks to the different regional galleries in which it was shown. In this way, the touring venues were able to install the exhibition with the same attention to detail, and retain the

163 conceptual elements of museum, laboratory and clinic that were represented in the UNSW exhibition. My engagement with exhibition design and fabrication was a key outcome of my

CPBR in terms of its aesthetic interpretation of my embodied experiences working with artists towards their new, Biomedical Art projects. The exhibition design also demonstrated my methodology of situational and material care, in my awareness of the research contexts of

Biomedical Art. Over the next few pages, I present a range of images from each exhibition to demonstrate how the different iterations of the project were realised.

164

Figure 21: UNSW installation of The Patient, 2016. View from work by Bob Flanagan and Sheree Rose towards Guy-Ben Ary in the background. Image shows the skeleton construction of the modular walls designed by Shahmen Suku. Photo: Silversalt Photography.

Figure 22: Manning Gallery installation of The Patient. Image shows the use of the designed exhibition structures and their aesthetic adaptation to a white cube context. Photo: Manning Regional Gallery.

165

Figure 23: UNSW installation of The Patient, 2016. View from entrance to Helen Pynor exhibit across Guy-Ben Ary towards background installation by John A. Douglas. Image shows the skeleton construction of the modular walls designed by Shahmen Suku. Photo by Silversalt Photography.

Figure 24: Manning Gallery installation of The Patient. Image shows the use of the designed exhibition structures and their aesthetic adaptation to a white cube context. Photo: Manning Regional Gallery.

166 Figure 25: UNSW installation of The Patient Objects, 2016. Objects included loans from the Museum of Applied Arts and Sciences and books from my own library. Photo: Silversalt Photography.

Figure 26: Manning Gallery installation of The Patient Objects, 2017. Objects and books from my collection. The original form of the display unit at UNSW Galleries was shortened to fit into the smaller space. Photo: Manning Regional Gallery.

167 5.4 Patient Knowledge and Public Programs

My desire to integrate a comprehensive public program for visitors and audiences into the fabric of the exhibition, and for it to reactivate interest in the exhibition across its season, was to facilitate discourse and a sense of community dynamic around a difficult topic—to create moments for mutual catharsis. Ethically, I felt a responsibility to visitors to deliver a public program that would elucidate and offer further insights into some of the challenging questions raised by the artists in their work. Shocking visitors with difficult and potentially traumatic content, letting them wade through the exhibition without any supporting/supportive framework, was not my intention for this project, as this works against my attentive methodology as well as the claim for expanding curatorial care. Continuing my conceptually attentive approach to artists in the presentation of their work, I programmed significant moments for more in-depth visitor participation in direct conversations around their work, throughout the exhibition timeframe. The program I developed for the exhibition at UNSW can be found in Appendix B.

A major facet of the public program for the exhibition was The Patient Forum, presented on

24 July 2016 in the lecture theatre at UNSW Art & Design. This was an interdisciplinary forum in which speakers from across the arts and health sectors spoke together about different medical subjects including Chronic Pain, Organ Transplantation and End of Life.

This arrangement of speakers created a transdisciplinary space for discursive conversation that reflected my conception of the intersections of the museum, laboratory, and clinic.

Bringing together health workers, artists, patients, and specialists produced multidimensional perspectives on the same concerns, and presented the patient perspective of medicine within a non-hierarchical platform that included medical professionals. I presented a keynote address

168 that focused on the curatorial project and my artistic research. Speakers included three key artists in the exhibition, Eugenie Lee, John A. Douglas and Helen Pynor. They were joined by Gynaecologist and Female pain specialist Dr Susan Evans; Emeritus Professor Roly

Sussex from the School of Languages and Cultures, University of Queensland; Prof. Dr.

Kumud Dhital, Cardiothoracic specialist and transplant surgeon, St Vincent’s Hospital,

Sydney; Max Mohr Transplant recipient and representative of Transplant Australia; Joshua

Cohen, Clinic Nurse Consultant at Concord Palliative Care Unit; and Victoria Spence, an end of life specialist and activist. The forum information and schedule of speakers, including their biographies, can be viewed in Appendix F. This significant forum, featuring a wide range of speakers from across the medical and health complex, demonstrates my receptive care to other forms of community knowledge and experience, informing public engagement with the exhibition.

Two weeks after the exhibition opening, I produced a three-night performance of cellF with

Guy Ben-Ary and his collaborative team at the Cellblock Theatre, part of the National School of Art which was co-presented with the support of the National Art School Gallery.261 cellF was performed with the Sydney based musicians, Chris Abrahams, Ensemble Offspring,

Clayton Thomas, Darren Moore, and Jon Rose. As I have already detailed in the previous chapter, Ben-Ary’s decision to present the work in a performative environment was inherently tied to its conceptual basis, as a “rock star in a petri dish.”262 But choosing a space outside of the main venue was based on the acoustic and spatial shortcomings of the gallery environment. The work is intended for a crowd, complete with the collective energy of a

261 National Art School, ‘cellF’, What’s On, https://www.nas.edu.au/Whats-On/cellf/, (accessed 14 July 2018). 262 A. Taylor, ‘“Rock star in a petri dish”: Guy Ben-Ary harvests cells to create an external brain to play music’, Sydney Morning Herald, 6 June 2016, https://www.smh.com.au/entertainment/art-and-design/rock-star-in-a- petri-dish-guy-benary-harvests-cells-to-create-an-external-brain-to-play-music-20160606-gpcvop.html, (accessed 14 July 2018).

169 people engaged in hearing and feeling the neural network of cellF responding to the musicians’ instrumentations. Moments of mutual acknowledgement of this living-to-semi- living reciprocity, of the liveness of encounter between audiences and Ben-Ary’s living brain, were palpable within the space.

The contribution of Sheree Rose, partner and collaborator of Bob Flanagan, to the exhibition during its final weeks was a result of my meeting with the artist in Los Angeles while researching her archive at the ONE Gay and Lesbian Archive and the University of Southern

California. In Sydney, Rose collaborated with local, body-based performance artist and writer, Fiona McGregor, on an evening of conversation, and in a performance called

Resurrection Redux (2016) for the exhibition’s closing night. These two live events brought the living history of Rose and Flanagan’s collaboration into the exhibition space, while the performance saw Rose performing a series of BDSM ‘medical’ rituals on the body of a male volunteer, Aaron G. Sinclair. Rose’s current practice includes a collaboration with British- based artist, Martin O’Brien, with whom she makes new work, and also re-presents performances that were originally made with Flanagan.263 The ritualised, intergenerational exchange of Rose with O’Brien, and also with McGregor and Sinclair in the performance for

The Patient, conveys a continuum of Rose’s care, beyond the death of Flanagan. The performances also temporarily resurrected him within the moment, through other bodies.

As a lively body activating the exhibition space, the visitor in the context of The Patient forms temporary and partial attachments to many other represented bodies; sick bodies, terminal bodies, substitute bodies, transformed bodies. The intentionally socially complex

263 M. O’Brien, ‘Performance’, Martin O’Brien: Performance Artist, https://www.martinobrienperformance.com/performance.html, (accessed 11 June 18).

170 form of the exhibition calls for care to be mediated in a holistic manner; through conceptual care for artists, their work and their intimate bodily representations, as well as visitors engaging (perhaps for the first time) with traumatic and compelling artistic material.

“An Ending” was performed for the close of the exhibition by artist, celebrant and death activist, Victoria Spence. Spence invited the audience for Rose’s performance to reflect on the exhibition and the artists, and on loved ones that had passed. The final performance of

The Patient consisted of the visitors and audiences for the performance remembering and speaking the names of the dead into the space. This ritual and performance were an important realisation of emotional care for artists and visitors together.

Figure 27: Sheree Rose, Fiona McGregor and Aaron Sinclair, Resurrection Redux, 2016, performance at UNSW Galleries. Photo: John A. Douglas.

171 Patient Knowledge and the Touring Exhibition

As I was based at UNSW Art and Design during the UNSW Galleries exhibition for The

Patient, I was able to personally attend to the dozen separate events that were programmed across its two-month season. For the regional program, I offered the full spectrum of the possible public programs to the touring venues, from which they could select according to their own capacity to deliver them. I presented the possibility to venues, that they could conduct public programs that would invite local specialists and people with lived experience to present these events.

Manning Regional Gallery ran several public programs alongside the exhibition that incorporated local expertise. Together we produced The Patient Forum, with John A.

Douglas, Eugenie Lee and a local Taree writer with disability, Fay Keegan, to present about their respective works and the intersection of art and life. The Taree Film Society also curated a film program with a medical theme to accompany the exhibition. At Riddoch

Gallery in Mount Gambier we presented a less formal discussion and gallery talk between myself and a local academic, Professor Lucie Walters, of Rural Postgraduate Medical

Education at Flinders Rural Health, South Australia. These extensions of my original public programs for the UNSW Galleries exhibition, demonstrated my CPBR methodology in its receptive care towards adapting public programs to suit different social contexts.

This chapter has so far encompassed and explained my practical curatorial labour in facilitating visitor engagement, and conceiving of care for both visitors and artists in The

Patient exhibition. I have outlined my curatorial strategy of producing a lively, interdisciplinary exhibition environment and public program in which facets of the museum, the laboratory and the clinic coalesce. In this final artist case study of Eugenie Lee and her

172 work, Seeing is Believing (2016), I focus on the artist’s appropriation of the clinic consultation—its scheduling of one-on-one, private appointments—as a format for bringing visitors into temporary connection with patient experience. Made at the intersection of art and medical research, this example of Biomedical Art demonstrates the capacity for such work to reach beyond the boundaries of individual human experience. In this case study, I also reflect upon the challenges that the work presents to institutional and curatorial care for artists and audiences.

5.5 Case Study 4: Eugenie Lee

I sit in a waiting area—a couple of white chairs against a black wall, opposite three small enclosures. The artist enters and takes me to one of these areas where we sit and introduce ourselves. At the table, I sign a paper print-out of a consent form—complex legalese that diminishes responsibility for what is about to happen.

In the first enclosure, the artist stands behind a desk stacked with a black box object with various apertures. She asks me to extend my hands out inside the box, and I see them appear in front of my eyes on a digital display. She initiates a computer program where yellow blocks of colour appear around my hands. The blocks change size and shape slightly and she tells me to keep my hands inside the yellow lines. After thirty seconds the digital display erases the side of the screen showing my right hand. Lee asks me to locate my right hand with my left hand inside the box, and instead of feeling my own flesh, my hand touches a bare part of the table.

She asks me to put my right hand inside the box again, and to extend my index finger. My pointing hand appears in the digital display, and she lightly pinches the tip of my index

173 finger. I feel a pulling sensation and my finger appears to grow, like a rubber band being stretched-out. She stops pulling and then pushes against the tip of my finger and I can feel it shrinking while watching it become a stump of knuckle on the screen.

We leave this area and the artist invites me inside what looks like a large safe. It is about

1.5m square and lined with upholstered fabric padding. I sit on the chair inside, and put on a glove that is connected to cables, as well as an Oculus Rift VR headset. I can see my gloved hand represented in the VR space and I wiggle my fingers in front of my ‘eyes’ against a red background. My digital arm is synced to my movements and I start to feel pressure in my ears and silence fill the space around me. In the VR feed, I see my hand and arm begin to swell, taking on the appearance and thick sensation of uncooked sausages. The VR space darkens, and scraping sounds accompany a vision of barbed wire creeping into the frame. The wire scratches towards my hand, eventually piercing it through my palm. I feel heat and pain at the point of rupture, then the wire winds back, my hand returns to normal and the sequence stops.

Figure 28: Eugenie Lee, Seeing is Believing, 2016, virtual reality view. Image: Andrew Burrell.

174

I write about my participation in this work in order to emphasise its composition of social, environmental, performative and technological interfaces by the artist. This retelling of my somatic perception of Seeing is Believing (2016) by Eugenie Lee, details the accumulative effects of these different factors on my experience of virtual pain, in the context of The

Patient. The artist’s use of an array of tools and constructs in this work, mirrors scientific findings into Chronic Pain and Complex Regional Pain Syndrome (CPRS) which suggest that external factors inducing anxiety in patients, contribute to their pain perception.

This case study draws a compelling conclusion to this chapter. It is an example of interdisciplinary, Biomedical Artwork that challenges many of the binary oppositions at play in the medical gaze, including the division between the ill and the well. The artist’s career, which has spanned an array of art forms including figurative painting, has been applied to the representation of Chronic Pain, a widely misunderstood illness that is inherently difficult to represent as it “is a multidimensional phenomenon involving physiological, psychological and social factors.”264 The work, which was commissioned for The Patient utilises virtual reality, immersive installation, sound and performance, to create a mixed reality environment into which visitors are drawn, one-by-one, into an intimate encounter both with the artist herself, and a technologically mediated form of pain.265

The foundation of the work is a clinic-like consultation with visitors lasting for thirty minutes. The performance collapses the distanced perspective of the medical gaze, while

264 A.J. Koestler and A. Myers, Understanding chronic pain, Jackson, University Press of Mississippi, 2002, p. xii. 265 I previously published a short account of this work in the ‘Anxiety’ issue of Artlink in 2017. B. Dean, ‘The art of dis-ease’, Artlink, vol. 37, no. 3, 2017, https://www.artlink.com.au/articles/4616/the-artof- dis-ease/, (accessed 28 August 2018).

175 transferring the subjective experience of the artist-as-patient into the visitor’s body. The work utilises neuroscientific research into forms of Chronic Pain and CPRS that treats patients using Virtual Reality and other technological platforms. In the research space, these visual tools quickly act to trick the brain of a pain patient into perceiving positive bodily change, which can provide temporary relief from pain.266 The research is based on the thesis that chronic pain is formed in motivational and emotional areas of the brain267 and heightened by a range of psychological factors including depression and the anticipation of pain itself.268

Guiding Lee’s research and engagement of scientific partners for Seeing is Believing, was her desire to find answers and potential solutions for her ongoing experience of CPRS, an experience that could not be reconciled with a solo, studio-based, painting practice. Her connection to neuroscientists at the research institute Body in Mind at the University of South

Australia 269 was made possible through a Synapse residency awarded by Australian Network for Art and Technology (ANAT) in Adelaide. Lee was interested in developing a visual and physical language beyond the reaches of representational painting, as the subject of her work was her own experience of CPRS.270 Like many who suffer from chronic pain, Lee was challenged by the practical limits of expressing physical pain to other people, including her clinicians.271

266 D. S. Harvie, R. T. Smith, E.V. Hunter, M. G. Davis, M. Sterling and G. L. Moseley, ‘Using visuo-kinetic virtual reality to induce illusory spinal movement: the MoOVi Illusion’, in PeerJ, 2017, https://doi.org/10.7717/peerj.3023, (accessed 22 June 2018). 267 A.R. Mansour, M.A. Farmer, M.N. Baliki and A. Apkarian, Vania ‘Learning and Brain Plasticity in Mental Disorders’, in Restorative Neurology and Neuroscience, Amsterdam, IOS Press, vol. 32, no. 1, 2014, p. 129. 268 E. Lee, Interview with Eugenie Lee, [interviewed by Bec Dean], 29 March 2017, Project No. HC15850. 269 University of South Australia, Body in Mind, https://bodyinmind.org, (accessed 19 February 2018). 270 E. Lee, Interview with Eugenie Lee, [interviewed by Bec Dean], 29 March 2017, Project No. HC15850. 271 Ibid.

176 The clinicians, because of their university training, understand pain only in

relation to tissue damage. So if there is an ongoing pain, you just cut off that nerve

that’s linked to that area and then you should be fine. But people with Chronic

Pain still experience ongoing pain, and clinicians don’t understand why. So the

patient often gets pushed aside because the case is too difficult.272

Within the exhibition, Lee’s project was the most profound example of a direct, reciprocal collaboration taking place between artists and scientists. The collaboration between Lee and

Body in Mind was motivated by a shared desire to communicate in a participatory and embodied way about the neurological basis of pain. This knowledge about pain was intended to be of benefit to a wider community outside the research context, as well as for clinicians, whose understanding of pain is often limited to the idea that it has an objective and treatable provenance.273 Body in Mind’s vision is “To provide a credible and reliable channel through which clinical pain scientists can bring their scientific discoveries straight into the real world.”274

From my own personal experience as well as the researchers’ perspectives, what I

am really interested in is the intersection of objectivity and subjectivity. Of

course, researchers have to get data and recordings and to find a result and get an

average. But as a patient, my experience of their tests is subjective, so I like

working between these two perspectives.275

272 Ibid. 273 D.S. Butler and G.L. Moseley, Explain Pain, Adelaide, SA, Noigroup Publications, 2013. 274 University of South Australia, Body in Mind: About Us, https://bodyinmind.org/about-bim/, (accessed 19 February 2018). 275 E. Lee, Interview with Eugenie Lee, [interviewed by Bec Dean], 29 March 2017, Project No. HC15850.

177 In Elaine Scarry’s seminal text, The Body in Pain: The Making and Unmaking of the World

(1985), the author writes of the difficulty of expressing physical pain, stating that “physical pain is exceptional in the whole fabric of psychic, somatic and perceptual states for being the only one that has no object.”276 Chronic pain itself stems from no visible origin on the body.

Although pain may be felt to emanate from a hand or in an internal organ, there is no site of injury or infection to be found on the area in question.277 Lee’s work, transformed through collaboration into Virtual Reality and participation, alters the dynamic of pain perception as a fraught transaction from person-to-person, by putting the viewer of the work in the place of the person in pain, creating an empathic feedback loop.

Lee’s prior practice was dedicated almost entirely to the making of objects—figurative paintings—to convey her physical experience of pain and its isolating social impacts. Viewer interaction with this work is limited to visually encountering it in a gallery space and imagining a narrative within the surrealistic domestic contexts represented by Lee. The artist’s initiation of an interdisciplinary collaboration has however, resulted in an immersive project that emphasises feeling, the stimulation of multiple senses, and the potential for somatic knowledge of Chronic Pain to be conveyed through the body of the visitor. In this dynamic, the visitor becomes physically attached to a machine for person-to-person, sensorial sharing. Rather than occupying a distanced, objectifying perspective towards a discrete work of art, the visitor becomes momentarily possessed by it.

276 E. Scarry, The Body in Pain, Oxford University Press, 1985, p. 161. 277 D. S. Butler and G. L. Moseley, Explain Pain, Adelaide, Noigroup Publications, 2013.

178

Figure 29: Eugenie Lee, Seeing is Believing, 2016, UNSW Galleries installation detail with participant. Photo: Silversalt Photography.

In this way, Lee’s work aligns with my application of Donna Haraway’s ideas of “situated knowledge”, “partial perspective” and “temporary attachments”, to my conception and analysis of the exhibition. Haraway counters the idea of the transcendent, objective, scientific gaze with perception that is embodied, sensorial, and specifically located.278 In Lee’s case, her artistic and personal undertaking to gain knowledge of the complicated neurological operations of CPRS within her own physiology, is offered as an embodied and virtual glimpse for visitors into this physical and psychological space. This project does not claim to allow the ‘well or able’ to “see from their positions”279—the patient or the chronically ill— but points to the possibility of a temporary empathic connection through interdisciplinary reciprocity.

278 D. Haraway, ‘Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspectives’, Feminist Studies, vol. 14, No. 3, 1994, p. 583. 279 Ibid., p. 584.

179

Lee’s work, Seeing is Believing (2016), disrupts the relationship to care that audiences expect of a publicly-funded artist or institution. The work invites participants to sign-up for a

(virtual) experience of pain, which is the opposite of the safe spaces generally provided by cultural institutions. Seeing is Believing utilises 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. Working with digital artist Andrew Burrell and a team of specialist engineers across computer science and acoustics, Lee’s performative installation incrementally limited the breadth of sensorial perception of participants, and sealed them temporarily in a claustrophobic and acoustically anechoic space. Once inside and connected to an Oculus Rift and interactive glove, the VR program carried the participant through a scenario wherein their own hand appears to become swollen, and a potentially painful encounter is extrapolated. 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.

This inversion of care was the cause of some protracted negotiations between the artist and her neuroscience collaborators. The artist recounted:

I had to have my entire performance script approved by them. They directed me

word-by-word, line-by-line, through the entire performance. All three stages.

They told me that I would need to orally present the legal disclosure, which would

then be signed by the participant. But I was also directed to explain every detail of

180 the performance and participant’s interaction, so there would be no surprises. But

I thought, ‘There has to be a surprise! This is art.’280

This quote highlights the differences in approaches to ethics in participatory contemporary art, and research science involving human participants.

In earlier stages of negotiation, Lee’s collaborative partners requested first-aid responders or a registered nurse to be present in the space at all times, as well as a provision for participants to be rushed to a local General Practitioner in case of adverse reactions.281 This was deemed necessary by the neuroscientists in case visitors expressed discomfort in while participating in the work. The consent process for the project was eventually resolved around an online booking procedure through which potential participants answered basic health questions, and acknowledged their comprehension of detailed information about the work. A copy of this document can be found in Appendix E. From Lee’s perspective, it was crucial to personally perform the work, to act as the conduit for visitor experience. This meant that her presence in the gallery was maintained for four days per week, over the seven weeks of the exhibition period. The legal disclaimer process insisted-upon by her partners added fifteen to twenty minutes, to a twenty-minute, one-on-one performance.

While rigorous disclaimer and disclosure processes were inserted into Lee’s performance to benefit the wellbeing or safety of the visitor, her own self-care and health was compromised by the same measures. In our interview following the first presentation of the work at UNSW

280 E. Lee, Interview with Eugenie Lee [interviewed by Bec Dean], 29 March 2017, Project No. HC15850. 281 Ibid.

181 galleries, we discussed how the project could be modified to be less impactful and tiring on her body, for the various iterations of the exhibition’s tour.

Instead of a forty-five minute performance, I’m going to reduce it down to twenty

minutes. I think this is possible. Also, it would be a better performance work and

bring out potentially better reactions from participants as well. I’m not going to

talk as much as the scientists asked me to originally.282

This case study reinforces my intention to create audience and visitor engagement programs that attend to the needs of visitors, as well as the artists whose works they are engaging in.

Lee’s work demonstrates, on a practical level, how programs that do not adequately support the care requirements of artists with different needs, can adversely affect artists in the performance of their work. While the strictures around the artist’s attachment to her work, as a performance that operated between nine-to-five were largely self-imposed, on reflection, this timetable and process should have been more rigorously assessed prior to the opening of the exhibition and the publication of a performance schedule. However, the work itself, and its legal provisions were finalised only in the few days prior to the exhibition opening.

In the presentation of the final project, contentious issues of liability, responsibility, and the management of the care of visitors as participants were manifested towards the final production phase, illuminating for Lee that, “I realised my collaborators didn’t understand art. Some of them had never stepped into an art gallery in their lives.”283 In spite of the difficulties experienced between the artist and her scientific partners during this first

282 Ibid. 283 E. Lee, Interview with Eugenie Lee [interviewed by Bec Dean], 29 March 2017, Project No. HC15850.

182 collaboration and the public outing of Seeing is Believing for The Patient, they are continuing to work together on future projects and reiterations of the VR experience, including a wearable module that can fit in a backpack, which does not have to be controlled by Lee as a performer.

Lee’s project encapsulates many of the ideas and arguments I have presented and progressed in this chapter. Her examination of a condition that she has lived with for many years has resulted in a project with an array of different outcomes to reflect upon; the practicalities of human ethics protocols in her work, her inversion or disruption of the medical gaze through performance and technology, and the creation of a tool for empathy that is experienced rather than seen or demonstrated. Seeing is Believing combined the artist’s intention to create a multimedia artwork harnessing the potential for embodiment and empathy, with an experimental engagement with scientific collaborators in realising a shared outcome. The work has a knowledge-sharing purpose that Lee openly addresses, and this can be transferred to others through active, person-to-person engagement. In this way Lee’s work manifested the museum/laboratory/clinic concept that was originally guiding many of my early questions about curating and presenting Biomedical Art. Like Bob Flanagan’s Visiting Hours (1993), described earlier in this chapter, Lee also became a central, living point of the exhibition. But rather than becoming a vessel or sounding board for the confessions and fears of other people, Seeing is Believing effected a reversal of perspectives, so that the visitor can temporarily occupy the position of the patient. This Biomedical Art project takes the idea of forming an understanding of the experience of others by engaging with representations of different experience, further towards the possibility of embodying the experience of others.

183 For both of the regional touring venues for The Patient, Eugenie Lee and I presented Seeing is Believing as a week-long performance, in which there were limited appointments made available with the artist, as our debriefing conversation on her work for the UNSW exhibition revealed that it was too difficult for the artist to run the performances across the entire duration of the exhibition. The cost of transporting her heavy installation was also too prohibitive for the tour, so I personally constructed a portable space using the same structural materials utilised within Shahmen Suku’s exhibition design. This adaptive change demonstrates the reciprocity between Lee and myself in our ability to reconceive the installation and performance of her work to suit both of our needs. My practical ability to offer a structural alternative to her complex installation also reveals in my CPBR, my capacity to attend to material concerns of the artist and the exhibition. These two photographs illustrate the transformation of Lee’s installation into a portable structure.

184

Figure 30: Eugenie Lee, Seeing is Believing, 2016, UNSW Galleries installation. Photo: Silversalt Photography.

Figure 31: Eugenie Lee, Seeing is Believing, 2016, Manning Regional Gallery. Due to the confines of the exhibition space, the performance was held in a workshop area. We also produced a similar lighting state as the UNSW exhibition, but this image shows the structure with the house lights on. Photo: Manning Regional Gallery.

185 5.6 A Supportive Exhibition Environment

Within the expansive field of interdisciplinary art, the call for curators and institutions to adapt to technological change, work differently with new materials and interactive platforms, and diversify their engagement with visitors and participants is continuously recurring. Sarah

Cook and Beryl Graham’s book Rethinking Curating: Art After New Media (2010) directly addressed this issue, concluding among other things that:

New media art fundamentally disrupts a curator’s and an audience member’s

understanding of the stages of production, distribution, and consumption of a

work of art....With new media art, artists have opened up opportunities for the

audience to be participants—as curator, documenter, tagger and collector. As

such, the modes used by curators in rethinking their roles in relation to this

challenge must be able to work collaboratively, across the boundaries of

disciplines.284

In her essay, Bioart and nanoart in a museum context (2010), Ellen K. Levy suggests that institutions undertaking exhibitions of Bioart or nanoart should consider their infrastructural capacities, as well as their legal and moral obligations towards living art.285 The Curating

Third Space research group from UNSW, in evaluating art-science collaborations, emphasise the “departure” of research-driven art-science exhibitions from conventional exhibition

284 S. Cook and B. Graham, Rethinking Contemporary Curating: Art After New Media, Cambridge, MIT Press, 2010, p. 302. 285 E. K. Levey, ‘Bioart and nanoart in a museum context: Terms of Engagement’, in Marstine, J. (ed.) The Routledge Companion to Museum Ethics, New York, NY, Routledge, 2011, p. 459.

186 models, creating trans-disciplinary environments in the public domain.286 That the interdisciplinary arts are rapidly diversifying, growing, and recalibrating against a background of slow-to-change, institutional conservatism is well established, and presents ongoing challenges for making exhibitions that include new materials, technologies and interactive platforms. In this curatorial research on Biomedical Art, I contend that alongside the legal, moral, practical and conceptual considerations it raises, curating needs to carefully attend to the living things and living people that coalesce around its aesthetic experience. I have done so in The Patient by creating supportive structures in design and public programs, through which visitors may engage with difficult and potentially painful (in the case of

Eugenie Lee) artistic projects.

My CPBR for The Patient, while informed by years of working in the heterogeneous area of interdisciplinary arts, including new media, sound art, Bioart and performance, has been focused on merging this practical and conceptual knowledge with a heightened awareness of and care for the lived experiences, emotions and vulnerabilities of artists, participants, and visitors. In this chapter, I have situated ‘the visitor’ within the broader social manifestations of medicine and medical treatment as taboo subjects, and the proliferation of the medical gaze in culture. My CPBR has emphasised a need for an attentive approach to curating that accounts for the visitor and their potential unfamiliarity with the exhibition themes and imagery, as well as the intimate and personal nature of the artistic practices they encounter. In this chapter, I have addressed my selection of works, exhibition design and the development of a significant array of experiential and intellectual public programs in relation to this

286 L. Muller, J. Bennett, L. Froggett and V. Bartlett, ‘Understanding Third Space: Evaluating Art-Science Collaboration’, Proceedings of the 21st International Symposium of Electronic Arts: ISEA2015: DISRUPTION, Vancouver, BC, Simon Fraser University, 2015, p. 1.

187 objective. I frame this as curatorial labour in terms of conceptual, material and emotional care.

Through my articulation of an interdisciplinary framework of engagement for the exhibition, that combines aesthetic and ethical properties of the museum, laboratory and the clinic, I have presented an example of interdisciplinary curating that engages with contemporary art across forms, contexts and time periods. These histories, collaborations, contexts and scientific processes begin to describe the ontology of a field of practice I am calling

Biomedical Art, which is a key outcome of my CPBR. In bringing my research together for

The Patient, the new experiments in Biomedical Art—new processes for working with communities in the medical health sector, and personal investigations into a lived experience of illness using the tools of science—have been presented against a historical background that illuminates the social and cultural impacts of the medical health complex. Throughout The

Patient exhibition, I produced public programs that engaged visitors with artists, clinicians, and people with lived experience, providing forums that flattened the hierarchies that normally privilege expertise over embodied knowledge. I have identified this form of labour through conceptual, material and receptive care.

An attentive curatorial focus on visitor experience and curatorial care, practically and conceptually demonstrated through the case study of artist Eugenie Lee and her work, Seeing is Believing, coalesces my arguments about agency for both artists and visitors in the exhibition. My description of this work details the disruptive, fruitful characteristics of

Biomedical Art in creating immersive experiences for visitors that lean towards the development of empathic responses. Through this case study, I have tried to show how interdisciplinary collaboration creates the potential for audiences to put themselves on the

188 other side of the dichotomy of ill and well that operates through the medical gaze, and how the exhibition environment presents the supportive scaffolding in which participants can experience an inversion of care. The adoption of aesthetics, protocols, and ethics of different research contexts in the gallery—the fabrication of a clinic—changes the dynamic of interaction between a visitor and a work of art, in which visitors submit control of their aesthetic experiences over to a performer and their artwork.

I feel I have also identified a gap in the burgeoning art and health sector in Australia, which is in the curation of practice by artists with lived experience of illness for public audiences. The work that I have engaged with and researched for The Patient can be interpreted as neither therapeutic nor useful in a health-sector treatment context, nor does it reward a purely educational curiosity for learning about illness, or offer-up medical bodies as spectacle or as specimens. However, various works interpret and reframe the dynamics of art in therapeutic and museological contexts to reposition the patient perspective as an active, creative agent within them. What my CPBR presents in relation to the art and health sector, is the notion of the medical patient as an empowered, creative subject. The case study of Eugenie Lee in this chapter, shows the patient in leading-edge research and engagement with a scientific partner, in challenging orthodoxies around pain through embodied, aesthetic experiences.

In curating The Patient, I have attempted to address an under-examined area of life and the social inequity in which it exists, while considering the ethics of doing this work from the perspective of the visitor and the artist. The artworks themselves suggest, if not outright demand an attention to progressing their ideas and politics through an informed, ethical lens.

I propose that my implementation of supportive structures for engaging with The Patient exhibition, is an expression of material and conceptual care. This careful methodology

189 addresses the exhibition as a lively, interactive entity that is invigorated at different points throughout the exhibition period by artists and by visitors. In this space, the visitor as a lively body, connects with many other kinds of body: patients, artists-as-patients, living materials outside artists’ bodies, representations of the dead, and the bodies of animals that stand in for humans.

190 6. Conclusions, Findings and Contributions

Opportunities of the Curatorial Practice-Based Research

My Curatorial Practice-Based Research project has unfolded over four years, beginning with my discernment of an emerging field of art practice—Biomedical Art—investigating its qualities and its histories, and thinking about how, and through what methods it might be curated and shared with audiences. This research has given me the opportunity to focus on the development of a culturally, socially and academically significant curatorial project, to construct an ontology for Biomedical Art, while enabling me to develop, implement, and reflect-upon my curatorial methodology, which is grounded in care.

The Patient: The Medical Subject in Contemporary Art was realised as a major exhibition of international and Australian art, for which I spent the early years of my candidacy researching artists, artworks, curatorial projects, and exhibition-making concerned with the medical subject. Throughout this time, I engaged with artists and their collaborators in the process of developing their projects, fundraising for the exhibition program and tour, and reflected on my curatorial activities and methodology.

In the final two years of my candidacy, I spent a lot of time with the exhibition, in and amongst it, redesigning it for touring, travelling with it, installing it and meeting its different audiences in different parts of Australia. My publicly stated intention for the exhibition was to “create a space … for poetic, reflective and social forms of engagement with issues by which we are all at some point touched.”287 The Patient is a curatorial project about life and its challenges, and I wanted this research to yield public outcomes that would extend beyond

287 B. Dean, ‘Art and the Medical Patient’, The Patient, exhibition catalogue, Sydney, New South Wales, UNSW Galleries, 2016, p. 8.

191 a single audience base, and which connected with ordinary people beyond the academic context.

This thesis The Patient: Biomedical Art and Curatorial Care includes a historical survey of the artist-as-patient and reflective writing that examines the lifecycle of this CPBR, its influences, research processes, methodologies and outcomes. It has expanded my awareness of the processes and activities involved in my curating, and how they change the outcomes of exhibition-making. In this way, my CPBR project yields the public presentation of a group exhibition and tour, a catalogue and discursive visitor engagement program, as well as an exegesis that reflects upon these outcomes and their contributions to the history of contemporary art, and to curatorial theory and practice.

The key opportunity presented by my CPBR was to reflect and build on the idea of curatorial care in relation to a specific exhibition theme, and emerging field of art practice. Artists-as- patients and artists making biomedical art represent, collaborate with and embody the patient subject in ways that make explicit the alignment of ‘care’ with ‘control’ in the medical/health context. However, my CPBR has found that artists’ agential presence within these systems, and through their powerful images, installations, performances and participatory works, show that this power-differential can be resisted. Not only resisted, but in some cases transformed into co-productive, interdisciplinary collaborations. Their works actively disrupt the linearity of the “medical gaze” as identified by Foucault. Thus, in acknowledging the agency of the artist-as-patient and the medical patient as creative subject, the idea of a straightforward or unidirectional relationship to care in my particular curating and work with artists, is brought into question.

192 Findings from the Research Questions

Biomedical Art

My CPBR was guided by two connected questions. The first concerned the nature and the properties of Biomedical Art:

What are the characteristics and qualities of Biomedical Art?

- Its histories and lineages? - Its social and cultural manifestations?

- Its aesthetics? - Its modes of production?

- Its creative contexts?

I addressed the first subsets of this question through my analysis of artistic practice, curating, exhibition-making and writing around the artist-as-patient, as well as related discourse produced around the expansions of Bioart, which comprised the second chapter of this thesis.

The result of my analysis of the histories, lineages and social contexts, anticipating the emergence of Biomedical Art, was the delineation of this field as comprising collaborative artistic enquiry ranging across different aesthetics and processes, which is critically informed through vectors of biological science research, and the lived experience of the medical patient. This is a field of art that unites social forms of art practice and performance, with scientific experimentation and collaboration. My research has contributed to the field of art history and theory, through this analysis of the qualities of Biomedical Art, by showing the new ways that art connects with scientific research. My research includes performance and the body in Biomedical Art, and in the work of artists-as-patients, to strongly argue for the role of art in life, including in its most extreme and intimate aspects and expressions. It

193 recognises the medical patient as a creative, powerful, and collaborative subject, and provides a contemporary history of artistic practice to support this claim.

In Chapter 1 and Chapter 2 of this exegesis, I outlined some of the qualities that I initially perceived in Biomedical Art including: a connection to the health and medicine sector through a range of experiential vectors, the employment or engagement of specialist scientists or technologists, collaboration and reciprocity (rather than a solo endeavour), and the engagement of the human body as locus for aesthetic experience. What my research has discovered in the development and presentation of The Patient, is that Biomedical Art can also be understood through its more profound qualities including its subversion of the medical and diagnostic gaze, its enlightening representation of the suffering patient body and the body in pain, its care for liveness and lively materiality, and its nurturing of and respect for patient knowledge.

My CPBR has shown the new pathways and contexts for knowledge-making that are open to artists in Biomedical Art, including human neuroscience research, pain research, regenerative cell biology and stem-cell technology. It has revealed the new material relationships developed by artists in reintroducing human biology and human experience into the research spaces of Bioart, and connecting this materiality into social, performative, interactive and immersive art encounters. The research detailed how I introduced this work to audiences, using a range of curatorial strategies and scaffolds, including the development of an interdisciplinary public program, an exhibition design which referenced the museum, laboratory and clinic research contexts of Biomedical Art, and through my selection of works which situated new practice against the historical. In this way, my research and its outcomes

194 holds significance for cultural institutions in terms of visitor engagement strategies for programs that connect art with science.

This CPBR will be useful to a range of different researchers, including cultural practitioners, theorists and a new generation of interdisciplinary artists. My exhibition project and exegesis show new relationships in art and science, forming from a range of different influences and lineages. Similarly, my research finds that artists making Biomedical Art are driven by their enquiries into art and science, from very different foundational practices including performance, painting, photography and Bioart.

This research assembles a history of artistic practice, which I believe should be useful to the growing field of art and health programming and policy-making in Australia. The research documents and presents an area that is presently underrepresented and underexamined in this field, namely artwork by medical patients, and art practices that recognise the medical patient as a creative subject. My case studies of John A. Douglas and Eugenie Lee in Chapters 3.5 and 5.5 respectively, show how Biomedical Art, and the artists’ aesthetic recuperation of their chronic illnesses, has facilitated remarkable insights into the experience and understanding of disease. As John A. Douglas reveals in Chapter 3.5, this work has been life- giving.

Attentive Curatorial Practice

The analysis of my curatorial practice, and articulation of a curatorial methodology, is a substantial contribution to knowledge in the growing academic field of CPBR, as well as to

195 curatorial practice for independent curators, galleries and museums, as I have mentioned above. My analysis has extended across three chapters to engage with the different subjects of my CBPR, and the ways that I have conceived of relating to, and working productively with artists, the lively materials of Biomedical Art, and audiences for my exhibition project.

My second research question asked:

How does curating Biomedical Art and art work engaging with the artist-as-patient and the medical patient subject, expand the concept and practice of care in curating?

The Patient: The Medical Subject in Contemporary Art has been a fruitful exhibition project through which to research and reflect upon the expansion of care in curating, as care is a primary subject in treatment, research and experimentation in the sectors of health and medicine, and in biomedical science research. In devising and presenting the exhibition through several iterations, I have created the conditions to reflect upon my own method of curatorial care over a significant timeframe, with an awareness of the broader implications for the care that is expressed by institutions, in scientific process, communities, archives, estates, families, loved-ones, and by artists themselves. I have undertaken this analysis through chapters that focus on care and the artist, care and lively materials, and care and the exhibition visitor. In the following section of this conclusion, I will summarise how my methodology of embodied, attentive curatorial practice was expressed, and what I discovered in the process.

196 I have examined the concept of curatorial care to account for and give insight into my own process. Across the thesis I have reflected upon the various subsets of care that are observable across my CPBR, which I will provide examples for here:

- Longitudinal Care—In my case study of John A. Douglas, I was able to reflect upon

the experience of working with an artist over many years, including my accumulative

understanding of the networks of care in which he is enmeshed as a chronically ill

patient, how these both inhibit and support his work, and the ways in which I

supportively connect to them. Through the process of a semi-structured interview, the

artist expressed how crucial my commissioning of his work was to his quality of life

experience, reinforcing the important role of art in life that is a quality of Biomedical

Art.

- Situational Care—In the first part of Chapter 3 Care and The Artist, I presented my

situational attention to artist-as-patients through my engagement with various artist’s

estates, gallerists, family members and surviving collaborators. Here, I was able to

demonstrate that situational care, including my presence at the ONE Archive in Los

Angeles working directly with Sheree Rose, and my face-to-face meeting with Linda

Sly at the Heide Museum in Melbourne, yielded significant artistic and material

outcomes for the exhibition, which were not able to be replicated through more

detached forms of communication with other galleries or archives.

In the case study of Helen Pynor in Chapter 4.3, I show how my presence at a key

point in her research at the Max Planck Institute of Molecular Cell Biology and

Genetics in Dresden, was able to inform the artist’s approach to performance-making

collaborators for a later phase of her project.

197 - Material Care—There are two key ways in which my material care manifests in The

Patient and in this exegesis. One is skills-based and one is concerned with the

perception of new material relationships in Biomedical Art, and the challenges they

may present to curating. In Chapter 3.4, I detail my access to the archives of Sheree

Rose at the ONE National Gay and Lesbian Archive in Los Angeles. I show how my

practical skills in photography and photographic retouching, enabled me to reproduce

a key work from the 1980s by Bob Flanagan and Sheree Rose for The Patient. In

Chapter 4, I have focused on the care expressed by artists towards the lively materials

that are produced in Biomedical Art. In particular, this section of my exegesis

contributes to my idea of care as expressed through a matrix of relationships, of which

I am a part, and which I can productively support. My support of Guy Ben-Ary in

finding a biomedical research space that could (in turn) care for his lively, active

neural stem cell clusters, shows an example of a networked form of care.

- Conceptual Care—In Chapter 5, in which I detail my reconstruction of the exhibition

for its touring iterations, I show how my skills in fabrication enabled me to construct

a portable performance space for Eugenie Lee, to replace her heavy installation. This

reconstruction was a result of conceptually attending to the project for touring, with

the preconditions that the artist would be physically and geographically unable to

present the work over its two-month exhibition seasons. I have also detailed my

conceptual attention to the problematic of the medical gaze in the context of the

exhibition space, and my decision to create different kinds of information sources for

visitors, including labels, brochures and a catalogue, in order to circumvent diagnostic

tendencies when looking at images of the ill.

- Receptive Care—In Chapter 5, I have given an account of my development of a

public program for The Patient that would be interdisciplinary, and mirror the concept

198 of the museum, laboratory, and clinic as a hybrid space for exhibition. In this way, I

considered the public program to be receptive to ideas and influence from outside

contemporary art. The Patient Forum, which included perspectives on illness and

disease from people with lived-experience, transplant surgeons, pain researchers,

palliative-care nurses, end of life specialists, as well as artists, broadened the

perspective on care afforded by the exhibition, and Biomedical Art. My receptive

attention to outside influence, was also extended through the exhibition tour, in my

collaboration with host venues on public programs that included local expertise.

- Emotional Care—The Patient is an exhibition engaging with subject matter that

invites the contemplation of death and finitude, and for which death is one of the

potential consequences of being patient. My ongoing curatorial relationship with John

A. Douglas is bound by friendship, and I demonstrated in his case study in Chapter

3.5, how supporting him during his recovery period, led to his sharing of important

insights into the development of his new work for the exhibition. The intimacy of my

understanding of Douglas’ chronic illness, and the support that he needs for his work

to flourish, enables me to productively advocate for him in fundraising and producing

his work.

This detailed analysis of different forms of care deployed through my work with Biomedical

Art has produced insights into the nature of curatorial care that may be applicable to other art forms and contexts—particularly forms where artists’ and audiences’ lived experience are central:

199 - That care in curating can be lively, transactional and reciprocal, and that the things it

cares for, are not things at all, but lively and agential, including artists, visitors,

audiences and materials.

- That curatorial care does not have to be viewed as unidirectional. It can be

considered as part of the network of care that we are all surrounded by, both the

impersonal institutional and the social relations of community, family and loved ones.

Curatorial practice should cultivate an awareness of these other forms of care at work,

in order to comprehend the needs of artists, artworks and audiences.

- That collaborative, interdisciplinary practice is challenging, takes time, and may or

may not yield expected outcomes for those involved. Curatorial practice should attend

to uncertainty as a guarantee of interdisciplinary art, and therefore longitudinally and

situationally engage with new work in development.

- That museums and galleries can be transformed into spaces where visitors are able

to reflect through aesthetic experience, on important and challenging themes, ideas

and issues. Curatorial practice can use supportive and ethical scaffolding in public

programming, information distribution and exhibition design to facilitate visitor

encounters with taboo or stigmatised subjects in contemporary art.

The findings of my research argue strongly for an active, engaged practice with artists making Biomedical Art. This goes beyond the truism that new kinds of art require new kinds of curatorial methodologies to supportively present them. It argues for being present in stages of artistic development, in order to properly comprehend the needs of Biomedical Art. It manifests Haraway’s feminist call for “situated knowledges” and “temporary attachments” being constructive to a better understanding of science, life and our place in the world, through an embodied research methodology that attends to artists and their works both

200 physically and conceptually. This form of care is networked, and connects across individuals and institutions. It is a methodology that is reciprocal in that it gives and receives knowledge in the process of attending. It sustains friendships and shared interests across science and art with artists, beyond ‘professional’ boundaries. I have discovered that caring through attentive

CPBR, has been crucial to the realisation of my exhibition project, in dealing with art that plumbs particular extremes of human existence. My findings will be of interest to curators working specifically at the intersections of art and science, from the different situations of exhibition-making in contemporary art, as well as the interdisciplinary museum. These findings for curating and care will be useful for future curatorial practice-based research, as they were all made in the process of researching, developing and presenting a significant exhibition project. These outcomes add an ethical, human layer to the need for galleries and museums to adapt to technological change in art.

Furthering the Research Outcomes

Having established the idea of Biomedical Art as an emerging field of artistic practice, and articulated my curatorial methodology in care, I have several lines of enquiry to pursue in research that extends from this CPBR.

The Lively Exhibition Context

A major contribution of the thesis is in demonstrating the way in which exhibition contexts can be used to engage audiences in arts and health in critical and challenging ways. This opens up new possibilities for curating in the arts and health field, particularly mental health, which is a growing area of national concern. I am joining postdoctoral researchers at the

National Institute for Experimental Arts at UNSW Art and Design to work on the next iteration of The Big Anxiety festival in 2019. For this project, I will be undertaking

201 Curatorial Practice-Based Research which will extend my conceptual and practical work in creating the lively, multidisciplinary exhibition context for The Patient, in considering the exhibition as experience and as participatory body in terms of its ability to engage with audiences and produce empathic, emotionally transformative encounters for visitors. I will work alongside researchers applying different qualitative measures to audience experience, which we will publish as research outcomes following the festival.

Longitudinal Curatorial Care

In identifying reciprocity and longitudinal curatorial engagement with artists as a key facet of my curatorial practice, I am continuing to work with three of my case-study artists on future works. The creative relationships that I have established with John A. Douglas, Eugenie Lee and Helen Pynor continue to deepen, but in particular I have two new projects in development with Douglas and Lee. Douglas is presenting a live version of Circles of Fire for Performance Space in 2018, which I am engaged on as producer, undertaking fundraising and project management. I am specifically attending to Douglas’ care between performances, and supporting the artist in monitoring his health and communicating this to Performance

Space as the performance period approaches. Eugenie Lee is undertaking a new collaboration with Body in Mind at the University of South Australia that examines the embodied physical responses to pain in pain patients, and working on a virtual reality experience which progresses her work on the empathic potential of VR in Seeing is Believing. I am assisting

Lee on this project as producer, in order to support her management of its collaborative components, and the experts involved in bringing the work to fruition. The need for a project manager to support Lee in her collaborative projects, emerged as a finding from our debrief and interview following The Patient. I will continue to support Lee throughout with conceptual and material care towards her practice.

202

Reciprocity Between Disciplines

Art and science collaboration is a defining quality of Biomedical Art. As part of my research for The Patient, I had informal conversations with my case study artists and their scientific collaborators about their work towards the goals of creative projects. These conversations illuminated the shared interests harnessed in interdisciplinary practice, which I wanted to mobilise in the program for The Patient through its multidisciplinary public forum, which included artists, surgeons, medical patients, and pain and end-of-life specialists. I presented

The Patient as an exhibition that expressed aspects of the museum, the laboratory, and the clinic as a curatorial convergence, in order to bring different approaches to knowledge exchange and transfer into the same space. Since this time, I have developed a podcast series for download and broadcast on local radio, called The Constellations, with DLUX Media

Arts which asks artists and their collaborators across science and technology to talk about why and how they embark on interdisciplinary projects, and the benefits and challenges for their different practices. This project continues my research into interdisciplinary reciprocity, of which Biomedical Art is an incredibly fruitful area of knowledge convergence. In this way, informed by my curatorial work on The Patient, I am looking at other ways to bring art and science discourse, including Biomedical Art, to the attention of broader arts and science audiences, and to give voice to these reciprocities and innovations in practice.

Closing Statement

This has been a project of enormous significance for me both personally and professionally, as it has given me a rich period of time in which to use reflective curatorial practice to identify and extend upon the repertoire of actions in my work as a curator of interdisciplinary art. It has put some much-needed distance between my ideas and the continuous churn of

203 organisational programming and administration to think, act and care about myself, and set- down my particular way of curating. The Patient: Biomedical Art and Curatorial Care has enabled me to focus on an area of artistic practice that is important to me, and which I hope I have demonstrated, sheds light upon a still marginalised and stigmatised area of human experience. The medical experience is one that will increasingly infiltrate whatever we understand to be ‘normal’ or ‘optimal’ life, as medical science enables us to live longer, intervene in disease and postpone premature death. At the same time, neoliberal agendas are determined to undermine the socialised nature of our existing health support, and create conditions for work and life that erode our wellbeing. Ultimately, this is a project that calls us all to care about one another and to recognise our agency in the network of care.

We will all be patient.

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Appendices

Appendix A The Patient catalogue (PDF layout version)

Appendix B The Patient brochure, UNSW Galleries

Appendix C The Patient Forum information

Appendix D The Patient Objects, UNSW Galleries and touring versions

Appendix E Example of exhibition label

Appendix F Eugenie Lee Seeing is Believing participant forms

215

Appendix A

The Patient catalogue (PDF layout version)

THE PATIENT

The Medical Subject in Contemporary Art

1 THE PATIENT

Curated by Bec Dean

3 ART AND THE MEDICAL PATIENT

Bec Dean

What do you look at while you’re making is also the artist’s body, including its up your mind? Ours is not a reflective representation, its recorded and live culture, we do no raise our eyes up to actions, and living biological material the hills. Most of the time we decide stemming from its source. A number of the critical things while looking at the artists in the exhibition use technologies linoleum floor of an institutional corridor, that stimulate the human body through or whispering hurriedly in a waiting room sound, vibration and immersion, with a television blatting nonsense. expanding pathways beyond the visual, Thomas Harris. Hannibal towards an embodied formation of empathy with, and understanding of, others. The aliveness and the viscerality The word patient has a dual meaning. It of these creative practices are rendered describes a state of being – of bearing down to text and image on the page – an a situation quietly, with no complaints. imperfect document for experiences that It also describes a person in a hospital register so profoundly and so deeply who is ill and submitting themselves upon and within the body. to diagnosis or treatment. The word originates from the Latin, patiens, which means “suffering, enduring,”1 and for the There are several influences and medical patient, it is a common enough predecessors for The Patient in historical experience to wait, with pain. exhibitions, and two of which I would particularly like to mention. Curator Ted

The Patient is an exhibition engaging Gott’s 1994 exhibition Don’t Leave Me with some of the more complex and This Way: Art in the Age of AIDS at the challenging aspects of human existence National Gallery of Australia, remains an – living with illness, adapting to bodily important touchstone for thinking about change and approaching death. It does the ways in which institutional spaces so through twelve bodies of work created can bring communities of difference – by individual artists and collaborations, those who do not seek to be normalised with new works by four artists, whose or their creative practices diluted by the interdisciplinary practices have sought to dominant culture – into conversation with integrate scientists, scientific knowledge the gallery-going public. Don’t Leave Me and laboratory contexts into their making This Way was presented at an urgent process. For many of the artists in the point in Australia’s attempt to contend exhibition, the body of work in question with the HIV and AIDS epidemics

4 decimating the gay community. The ‘Rinse the mouth—rinse the mouth’ with exhibition enabled artists, patients, the greeting of the Deity stooping from loved-ones, and community members the floor of Heaven to welcome us—when to gather together for conversation, we think of this and infinitely more, as grieving and celebration in a shared, we are so frequently forced to think of creative space.2 Bob Flanagan and it, it becomes strange indeed that illness Sheree Rose’s Visiting Hours, presented has not taken its place with love, battle, at the Santa Monica Museum of Art in and jealousy among the prime themes of 1993 and the New Museum, New York literature. in 1994 reproduced Flanagan’s hospital Virginia Woolfe, On Being Ill room and institutional waiting areas as part of the exhibition environment. The Patient was initiated by my In these contexts Flanagan became, engagement with four artists working in simultaneously, the art object on display, biomedical contexts. I began formulating the material and subject of the work, the project after spending a number and just a sick guy in bed who visitors of years working with John A Douglas to the space could sit beside and talk towards a performance-based solo with. Both of these projects tested the exhibition called Body Fluid II: Redux boundaries of the gallery space socially, (2013), presented at Performance Space, politically and formally – demonstrating Sydney. I knew Douglas first as an that galleries could be reimagined and artist, then as an artist with renal failure conceived as spaces for transformative, and then as a neighbour and friend. social human interaction with and Through all of these different roles, we through art. have continued our conversation across art, artist/patient subjectivity and the Considering how common illness is, how interdisciplinary possibilities for both tremendous the spiritual change that it our practices. It occurred to me that brings, how astonishing, when the lights Douglas’s work was embarking on a of health go down, the undiscovered slow-dive into his experience of renal countries that are then disclosed…how failure, through symbol and metaphor, we go down into the pit of death and environment and landscape, cultural feel the waters of annihilation close and sociological perceptions, right above our heads and wake thinking to down to his embodiment of disease find ourselves in the presence of the on tissue-based and cellular levels. angels and the harpers when we have Douglas talks about his work in relation a tooth out and come to the surface in to the epic poem by Dante – a journey the dentist’s arm chair and confuse his into the Inferno and its complex layers.

5 It’s a path that I have been invited to research of this work, investigating the walk on beside the artist, and this has end of life will engage with patients who been both an incredibly privileged and have experienced ‘lucid’ death and near- fraught space to occupy. Circles of Fire - death. (variations) (2016) navigates the post- operative, psychological and physical Infrequent journeys to the laboratories repercussions of immunosuppressant and offices of SymbioticA at the drugs on the transplant patient – a University of Western Australia in Perth continuous, disciplined battle for enabled me to connect with Guy Ben- physiological balance and survival. Ary and his research team, through the making of cellF (2015). For The Patient, I first worked with Helen Pynor on the I was able to present this performance project The Body is a Big Place (2011), work as a suite of three concerts on a biomedical project engaging with three consecutive nights, held at the organ transplantation, which she made Cellblock Theatre at the National Art with collaborator Peta Clancy. For The School in Sydney. cellF is an analogue Patient, I visited Helen Pynor in Dresden sythesiser, powered by a cluster of during her residency at the Max Planck human, neural stem-cells that can ‘play’ Institute for Molecular Cell Biology, with, and respond to human musicians. I followed by her studio in London and like to think of cellF as a cyborg, but in back in Sydney at the University of NSW an inverse way to our popular-cultural (and the local abattoir). In her work imagination – it is machine on the The End is a Distant Memory (2016), outside, and human on the inside. Ben- the artist’s scientific engagement with Ary became a short-term patient and popular culture’s ‘Holy Grail’ of science long-term carer for his own biological endeavor – the raising of the dead, or material and its differentiations into the extension of life – led to her focus biopsy, cultured tissue, stem cells and on human dependence on other animals then neural stem cells. The work has for the sustainment of life, and inversely, taken him four years of daily care to develop, along with the dedicated work the ‘humanity’ of animals we kill for of a team of specialist artist and scientist nourishment. In this work, chickens act as collaborators. cellF raises important a stand-in for the human experience of ethical questions about the possibility death, and the dissociated way in which for autonomous human life, outside they are presented for consumption the human body, and the autonomy of reflects our inability to face this mortal potentially sensate, human biomateriality. reality ourselves. Pynor’s regeneration of cells from a ‘dead’ chicken purchased from the supermarket shows the Eugenie Lee was introduced to me by liminality between life and death on a Vicki Sowry at the Australian Network microscopic level, and her sustained for Art and Technology in Adelaide, and

6 I was able to join her in the early stages power and subversive potential of art of her neuroscience-informed research at in to address discrimination, visibility Body-in-Mind at the University of South and the social impacts of the epidemic, Australia, which resulted in her work, socially engaged photographers, who Seeing is Believing. As a sufferer of the addressed directly and defiantly the loss chronic pain type, Complex Regional Pain of agency that patients experience within Syndrome (CPRS), Lee has progressed the hospital system, and body-based from the representation of her pain performance and conceptual artists, through an established, solo figurative whose use of their own bodies as object, painting practice, to a full immersion in subject and art material, brought the collaboration with neuroscientists and medical body viscerally into the space of the engagement of different specialist the gallery.3 fields, including acoustic engineering, virtual reality and sound design. The Among these artists is ORLAN – who is artist’s transition from representation perhaps (along with Stelarc) the most to live, participatory embodiment in her well-known artist using her own body as work was driven by her desire to move material for art-making. Integral to my away from the inexpressibility of pain inclusion of ORLAN’s work in The Patient through traditional means – facilitated by was acknowledging that her adoption the reciprocity of her scientific partners. of surgical procedure for the works for In this work, and that of Douglas, Pynor which she is most famous, was initiated and Ben-Ary I was witnessing artists by a real medical emergency in the occupying the spaces of science, and 1970s. In the work Omnipresence (1993) vice-versa, where collaboration was ORLAN speaks in French about her sought, valued and necessary. desire to “recuperate” this foundational medical intervention as art. The intention In shaping The Patient as an exhibition, of the artist to take control of, or refuse I was keen to address the artistic a situation in which the body is ordinarily practices and lineages that have submitted to the medical-health complex informed these four artists and to put without question, is a theme which them in conversation with new work resonates through the works of artists in the space. I have researched a wide including aforementioned Bob Flanagan range of contemporary art to engage and Sheree Rose. Carol Jerrem’s Hobart with the various lineages and progenitors Hospital Series (1979) is the oldest work of biomedical art: the feminist artists in the exhibition, though it maintains who challenged the social obligation a kind of contemporaneity through to hide the diseased or surgical body directness of Jerrems’ gaze and the from public view, the HIV and AIDS timelessness of the institutional spaces activist artists whose works brought she represents. Accompanied by extracts home to mainstream Australia the from the artist’s hospital journal (also

7 called The Patient), the selection of and Heath-Kerr’s obliteration of the self, photographs convey a kind of atomised through full-body costume-making, show sense of loneliness and exclusion – from something of the extraordinary energy everyday life, from medical knowledge and diversity of artists at the time, and from a range of possible futures. responding to the epidemic tearing- Jerrems died the year after these through their community. While now photographs were taken. twenty years old, McDiarmid’s series was made to be infinitely reproducible and his acerbic humour, which inverted the Like Jerrems, photographer Jo Spence conciliatory and patronising language continued to make work about her around illness, seems to have almost battle with breast cancer following her diagnosis and throughout her treatment preempted the self-aware and self- – her Final Project reflecting on her life deprecating, micro-witticisms on digital and art, and the approach of death. platforms such as Twitter. By contrast, Narratives of Dis-ease (1990) probed the Heath-Kerr’s practice eschewed both emotional depths of illness with titles language and identity, focusing instead Expunged, Exiled, Included, Excised on the extreme ‘othering’ of patienthood and Expected. In these works, Spence and the dehumanising effects of staged five self-portraits that focused stigmatisation. closely on details of her naked and draped form: half her torso without a The exhibition also includes two recent head, holding a “boobie prize”; the stark artworks made by artists John Wynne & revelation of her post-operative breast Tim Wainwright, and Ingrid Bachmann, with the word MONSTER boldly printed who have worked through different across her chest; weeping and clutching processes in close consultation with a teddy bear to cover her nakedness. transplant patient communities and The work Expected in this series shows hospitals. Transplant (2008) was made Spence squeezing her feet into pointy following a year-long residency by red stilettoes, reflecting the societal Wynne, a sound artist and Wainwright, expectation of a resiliently pretty a photographer at Harefield Hospital in femininity to rise above the adversity of London, a world-leading institution for disease.4 heart and lung transplants. The resulting video projection and sound work creates Both David McDiarmid and Brenton intimate portraits of patient experience, Heath-Kerr were Sydney-based artists from the joy of individuals feeling lucky who were included in Ted Gott’s Don’t to be alive, to the pain of those mourning Leave Me This Way: Art in the Age of the death of donors they will never know. AIDS (1994). The diversity of these Ingrid Bachmann, whose work, A-Part of practices, as reflected in McDiarmid’s Me (2014), which sits at the threshold to bold, Rainbow Aphorisms Series (1994) the entrance of The Patient, uses bone-

8 transducers to bring patient experiences seminal work of American performance into the visitor’s body through vibration, artists Bob Flanagan and Sheree Rose in meaning that voices of patients are the 1990s. Cross pays homage to the wit, transmitted through the visitor’s own fearlessness and generosity of Flanagan skeleton. A-Part of Me reflects the in creating spaces – both literal and intention of the exhibition, to get inside, metaphorical – in which to contemplate or to be temporarily inhabited by the the fear of death, and to laugh (and experience of others. cry) at sickness. Academic and artist working in biological tissue culture, Kirsten Hudson offers, A Precar(e)ious From its inception, The Patient was Impasse, in which she ponders ‘care’ intended to tour so that it could connect with audiences in regional Australia in its different forms – for the self, for as well as the urban centre of Sydney others and for aesthetics – and care – health issues being statistically as an ethically problematic practice. more pronounced in these contexts. Performance-maker, Brian Lobel has The exhibition design was conceived edited, for publication, the script of a by Shahmen Suku to be modular and work that he has previously performed adaptable to different exhibition live – Timeline of a Sex Life, Timeline of environments, while reflecting the a Cancer Life – which catalogues from aesthetics of the institutional spaces a personal perspective, the difficult in which I was conducting my research interplay of grave illness with sex and – museums, laboratories and clinics. In intimacy. collating and designing a resource library and a collection of non-art objects to The Patient has been made possible accompany the exhibition – researched through negotiation with multiple through the medical collection of the individuals and organisations. I would Museum of Applied Arts and Sciences – I like to thank and pay respect to those intended to give visitors access to the keepers of archives and of artists’ historical material culture and aesthetics memories who enable their works and of medicine, as well as offering additional ideas to be included in contemporary publications for enquiries into specific discourse: Curator and designer Sally artists. Gray who is the executor of the estate of the artist David McDiarmid; Linda Supporting my endeavor to reflect Sly, sister-in-law of Carol Jerrems, upon and provide external viewpoints whose introduction to me by curator, for The Patient in this publication are Natalie King enabled us to meet in three artists, writers and academics who person and borrow the artist’s works have contributed texts. David Cross is a from the Heide Museum of Modern Art participatory performance maker who in in Melbourne; The ONE National Gay his essay, Im/Patient, contemplates the and Lesbian Archives at the Library of

9 the University of Southern California, leading edge technologies. The artists Los Angeles, which granted my access in this exhibition deepen our own to the archives of Sheree Rose, and enquiries into the actual stuff of illness assisted my scanning of the hundreds and disease, death and life – how they of images which now comprise Wall manifest viscerally and psychologically of Pain (1982); filmmaker Paul Andrew as well as socially and politically. The and photographer, John Webber who driving concern for me in presenting as friends of the artist assisted my The Patient was to create a space – and selection of their video and photographs this publication – for poetic, reflective to represent performance artist Brenton and social forms of engagement with Heath-Kerr in the exhibition; long-term issues by which we are all at some point collaborator of Jo Spence and fellow touched. photographer, Terry Dennett who gave permission for the reproduction of her series, Narratives of Disease (1990) via We will all be patient. the Richard Saltoun Gallery in London.

Since I began work on The Patient, 1 people have asked me why I’m doing maquariedictionary.com.au, https://www. it. Of course, that’s not what they macquariedictionary.com.au/features/ word/search/?word=patient&search_word_ want to ask, but politeness prevents type=Dictionary, (accessed 9 July, 2016) them from being direct. The question 2 Gott, T. Don’t Leave Me This Way: Art in the is actually, “Are you sick?” or, “What is Age of AIDS (National Gallery of Australia, 1994) your stake in this issue?” But of course, 3 Art historian Amelia Jones has written everyone has skin in this game, and extensively on the work of body-based the patient perspective is one that performance artists. In Body Art she writes of is underrepresented in a culture that ORLAN, Flanagan and Rose that they, “turn champions optimal productivity above all the body inside out, enacting the stubborn else. We will all ‘endure, with pain’, but corporeality of the self while refusing any when we go through bodily trauma for conception of this corporeality as fixed in its the first time, we mostly do so without materiality.” Jones, A. Body Art: Performing the much prior reflection, as if there are no Subject (University of Minnesota Press, 1998), 226. maps and no guides available to us. The 4 Throughout Spence’s practice, she actively collection of works, new experiments resisted the image of submissive femininity, and ongoing projects that comprise The which continued through her gendered Patient are all variously difficult, fearless, representation of cancer. funny, painfully beautiful and unlovely. They range across media and connect to us as viewers and occasionally as participants through both familiar and

10 ESSAYS

11 IM/PATIENT

David Cross

The action is violent, abject and pure. out of galleries and into underground A frugal set of components include a clubs. It was in the S/M clubs, parties and hammer, a nail, a piece of lumber and a bookshops of Los Angeles that Flanagan determination to pierce skin and cross first performed his pan-disciplinary work the abject threshold. Of the profound across performance, writing and music. gestures in performance art in the second He was funny, profound, intensely curious half of the twentieth century, one of the as to the assorted thresholds of his body most transgressive is still comparatively and the body of his life partner Sheree little known. Bob Flanagan nailing Rose, and he was also sick, very sick. his penis to a piece of wood for the

Threshold Program on ‘Auto-erotic SM Flanagan’s performance of nailing his in 1989, while not exactly obscure, is not penis to a piece of wood is the act of elevated in the performance canon either. a self-proclaimed masochist seeking Compared to Chris Burden’s Shoot (1971), gratification from carefully orchestrated Vito Acconci’s Seedbed (1971) or Marina self-inflicted pain. But what is missing Abramovic’s Rhythm 0 (1974), Flanagan’s from the requisite opprobrium of horror action, one of many that saw him perform and disgust at this action is that this work an extraordinary range of masochistic and his extensive lexicon of piercings, acts on his body, occupies a contingent insertions and threshold testing is less position in the many narratives on about self-destruction than pure defiance. performance written since the 1990s. Flanagan had invented a multi-modal creative syntax that sought to sublimate

This in part is about timing. The late the pain he experienced knowing he eighties, was a complex period for was slowly but surely drowning in his own mucous. His acts are no more and performance as neo-conservatism, no less a positive and equal reaction to both inside and outside the art world, the extremity of a brutal degenerative pushed back against representations of condition in his lungs commonly referred difference and specifically the explicit to as cystic fibrosis. body. The AIDS crisis and the resultant hysteria manufactured by conservative forces that sought to link abnormal sexual Through the works in his auto-erotic practices to the wrath of God, was part series, Flanagan simply sought to invent of a broader attack on alterity which his own idiosyncratic creative frames that forced a good deal of radical performance could do justice to what he was forced

12 by circumstance to think and feel. That through sexual gratification, curiosity and these thrashed at the outer reaches of humour. If any artist could be justified in socially acceptable behaviors where sex a little scatter-gun flame-throwing at the and violence oscillate in a murky, almost unfairness of it all, it would be Flanagan libertine accord, distracts from other key but he understood the futility and waste considerations. Principal among these is manifest in such cathartic expressions that Flanagan offered unique insights into and crucially, he did not have a reservoir his entire life as a medical patient, defined of energy to spend recklessly. He had to always by tests, invasive procedures choose his battles and the terms they and being treated as a person who had were fought on. He was never going to something desperately wrong with him. win the war but the skirmishes, he sensed, His abnormal body was in many ways not were there for the taking.1 his own, it was the property of medical science, of radiographers, pathologists, Flanagan’s approach was to always to nurses and the litany of experts, charged entertain himself, and where possible, with slowing his incremental decimation. entertain others with meditations on Each one inflicted small acts of pain for the sheer unremitting absurdity of the supposedly greater good. His role being sick. His hilarious performance was to suffer each one for the grander, on acoustic guitar of Mary Poppins if nebulous, plan of prolonging his life. Supercalifragilisticexpialidocious changed In other words, he had no choice but to to Super masochistic Bob had cystic suffer for the vague aspirations of health fibrosis, he was supposed to die at ten but professionals to make him better. he was too precocious………. is beautiful both for its semantic elegance and its Where many might choose to frame audacious mashup of the saccharine Flanagan’s actions as the deviant working original.2 It’s also heartbreaking in the way of a diseased mind, they are more in which it spells out in a straightforward accurately the pragmatic performances manner the triumph of surviving illness of a highly agile mind seeking a level of or perhaps more accurately the sense agency most people take for granted. of wonderment in delaying its nefarious What makes all of his work so powerful is effects. Flanagan gave us permission to the consistency and surety of resistance laugh at being sick. Artists are very rarely that is never framed through anger, so generous and selfless. He was giving belligerence or especially self-pity, but us a unique insight into the remarkable

13 properties of living by revealing the body killing itself. Her often playful self- gradual demise of his body and with it his portraits embody a curious amalgam mind. That it helped him is important but of forensic investigation of the ravages we were the real beneficiaries.3 of cancer with a determined attempt to carefully compose the aesthetic frame of its representation. As she While unique, Flanagan was one of many got progressively more ill over time, artists to have captured the experience of Wilke refused to allow the increasing being sick, of being a medical patient. The medicalisation of her body to determine assorted artists in The Patient exhibition her identity. Wilke’s manipulation of attest to the extensive discourse of artistic responses that capture the the costumes and props are fantastical but experience of being unwell. Artists as at the same time speak to the power of diverse as Frida Kahlo, Jo Spence, David art as a key mechanism of pain relief and Wojnarowicz and Hannah Wilke are a agency in the often powerless space of small cross-section of artists in this field respite care. who have employed a range of artistic and literary modalities, that collectively Towards the end of his life both Flanagan speak to the meaning and representation and Rose were embraced by an art world of ‘abnormal’ bodies coming undone. that had previously been indifferent at best. In the work Visiting Hours (1994) in Battling the ravages of breast cancer collaboration with Sheree, he responded at the same time as Flanagan was by turning the art gallery into his hospital bombarding cystic fibrosis with room, with both Flanagan and Rose masochistic intent, New York-based artist holding court with everyone who was Hannah Wilke produced a similarly raw fortunate enough to come by4. He was and brutally honest body of work. Her very sick by then and spent numerous Intra-Venus series of photographs from days in the ‘real’ hospital leaving the 1992 documented the changing form of gallery as a ghostly space of absence. her body as chemotherapy and breast There were the accoutrements of sickness cancer fought a desperate campaign (the hospital bed, the assorted medical for dominance. Like Flanagan, Wilke technologies) and the accoutrements developed a uniquely personal syntax of bondage (he and Sheree had quite that meshed humour with a self-reflexive a collection) framed side by side. I understanding of the absurdity of her unfortunately chose a day like this to

14 visit them at the former New Museum on sickness captured across so many artistic Broadway in SoHo and thus missed that modes allowed us to understand the most precious opportunity to chat. There mystery of what it is to be healthy. were the brilliant self-portrait photos, and the assorted objects including the coffin with a television image of his face that 1 became your face as you came closer, but For a study on Flanagan that includes a series of interviews, an overview of his assorted the main act was struggling to breathe in projects and excepts from his writing including a hospital uptown. the extraordinary text Why? See Juno, Andrea and Vale, V (eds) Bob Flanagan: Supermasochist, Flanagan’s commitment to blurring the RE/Search Publications, San Francisco, 1993 2 divide between art and life spoke acutely The song is performed by Flanagan in Kirby Dick’s documentary of the artist, Sick: The Life to the experience of being a patient and Death of Bob Flanagan Supermasochist, while never accepting the fragilities Lions Gate Films, 1997. this role was supposed to entail. He 3 Flanagan captured many of his thoughts on was not prepared to aestheticise his why he chose his specific forms and approaches condition, to illustrate or pontificate on in his detailed writings on the subject. See, illness per se. His gift was braver and Flanagan, Bob, The Pain Journal, Semiotext(e), more difficult. Knowing that illness and Los Angeles, 2000. 4 It is important to highlight the centrality of its representation is the go to subject Sheree Rose to Flanagan’s practice. Many of the matter for soap opera (tragedy and works known and attributed to Flanagan were pathos packaged in santised, digestible developed collaboratively with Rose and their frames), he gave us, at considerable creative relationship was a central feature of cost, warts and all. He risked ridicule, Flanagan’s work. condemnation and the hysteria that comes from a profound fear of alterity. He risked people confusing deviance for art and the act of nailing his penis to a piece of wood as the act of a deranged nihilist. But then Flanagan understood what few of us will ever really grasp, that wisdom in tandem with creativity, volition and abandon can profoundly temper even the greatest adversity. His

15 A PRECAR(E)IOUS IMPASSE

Kirsten Hudson

04.12.12 An Elegy in Three Parts 44%bf 82kg 171cm 1210cals I am seeking out the conditions under which certain BMI: 28.04 BMR: attachments to what counts as life come to make sense or 1580.8cals P: 50g C: 140g F: 50g no longer make sense, yet remain powerful as they work W: 90cm T: 65cm C: against the flourishing of particular and collective beings. 103cm - Lauren Berlant. Cruel Optimism Cardio: 20mins X 7 Steady AM CUNNING RECOGNITION Lift: 2day on 1 off X 45mins PM A logic of care, or, an attempt to maintain composure 07. 01. 13 amidst crisis and lack 40% bf 78kg 171cm We live in a time of debility, a precarious state of living 2200cals measured against an impossible scene of fulfilment, a good- BMI: 26.67 BMR: life fantasy of capacity that is forever beyond our reach. To 1542.4cals be debilitated is to be steered towards thinking of life as P: 150g C: 175g F: 100g a sequence of projects that work towards the security of W: 88cm T: 65cm C: 100cm corporeal, affective and cognitive standards of flourishing Cardio: 20mins X 7 Steady in a future still imagined as bright. Lauren Berlant calls this AM unyielding hope: “cruel optimism”. Lift: 2day on 1 off X Haunted by the ever-expanding potentiality of the 45mins PM not-yet-actuated self - the ideal mind/body combo of 05.02.13 health, wealth, success and happiness - we swallow the 38% bf 76kg 171cm promise that bodily faults, physical injury, exhaustion and 2200cals vulnerability are able to be overcome. Life is reduced to BMI: 25.99 BMR: 1523.2cals P: 175g C: 105g F: 120g a series of self-regulatory processes supposed to enable W: 86cm T: 64.5cm C: the prospect of one day not being debilitated. 100cm But no one escapes the mark of debility. Debility is the Cardio: 20mins X 7 Steady new norm. AM In a quest to make life more bearable, possible, liveable, Lift: 2day on 1 off X we are encouraged to employ a regulatory mode of care as 45mins PM 01.03.13 a strategy to (hopefully) mitigate our precariousness. When 36% bf 74kg 171cm it comes to care for the self, first there must be recognition 2600cals of our own precarity, our own manner in which we fail to BMI: 25.31 BMR: 1504cals be productive, well (managed) machinesi. Recognition of

16 P: 200g C: 180g F: 120g lack, that is, a personal failure to manage the self, makes the W: 85cm T: 64cm C: 98cm body/self a legible object of care, and with this recognition Cardio: 40mins X 3-4 we attempt to correct or eliminate any trait that falls short Steady AM of the idealised norm. Self-care as self-discipline. But HIIT: 20mins X 3 AM what if the ability to exert control over one’s body is not Lift: 6X1.5hrs PM enough? And BTW it is never enough. What (or who) then, 03.05.13 32% bf 74kg 171cm is hindering our flourishing? 2600cals Pedagogies of attention become attuned to who BMI: 25.31 BMR: 1504cals (or what) is recognised as a comprehensible or P: 200g C: 180g F: 120g incomprehensible form of life, which in turn determines W: 82cm T: 63cm C: 96cm what bodies (and lives) are going to be made to pay for Cardio: 40mins X 3-4 our ‘progress’. Elizabeth A. Povinelli calls this regulatory Steady AM logic of care a politics of ‘cunning recognition’. Who HIIT: 20mins X 3 AM Lift: 6X1.5hrs PM (or what) is recognised as deserving of care? And 10.07.13 more importantly, whose bodies and lives are deemed 30% bf 74kg 171cm disposable? 2600cals But, what if we refigure precarious life from a site of BMI: 25.31 BMR: 1504cals debility to be regulated, to instead locate precarity, P: 200g C: 180g F: 120g following Jasbir K. Puar, as an opportunity to animate W: 76cm T: 61cm C: 94cm Cardio: 40mins X 3-4 questions that expose what (or who) comes at the cost of Steady AM ‘us’ getting ‘better’? HIIT: 20mins X 3 AM Lift: 6X1.5hrs PM SITUATED PRECARITY 07.09.13 28% bf 72kg 171cm An ethics of care, or, a delay that opens out into anxiety 2600cals When precarious life is refigured as an opportunity BMI: 24.62 BMR: 1480.1cals to expose the very ways that we rely on, need and P: 200g C: 180g F: 120g are dependent on others in fundamental ways, we W: 75cm T: 60cm C: 92cm rethink our very relationality with others. Methods Cardio: 40mins X 3-4 through which one comes to encounter, perceive, know Steady AM and produce particular relations to things (human, HIIT: 20mins X 3 AM Lift: 6X1.5hrs PM environmental, animal others, as well as a whole host 04.12.13 of other others, fleshy lively material even) impacts on 27% bf 70kg 171cm what and how we care.

17 2100cals In a time when art is no longer connected only to a BMI: 23.94 BMR: 1460cals specific type of object but to constellations, relationships, P: 200g C: 100g F: 100g and interventions into different contexts, I am interested W: 74cm T: 60cm C: 90cm in how curatorial methods of ‘making visible’ might Cardio: 40mins X 3-4 influence politics of recognition, relationality and worth. Steady AM More specifically, I am concerned with how particular HIIT: 20mins X 3 AM Lift: 6X1.5hrs PM curatorial appeals to care perpetuate (and/or negate) the 05.03.14 stories we tell ourselves about whose bodies and lives 22% bf 66.5kg 171cm matter, versus those we deem disposable, ungrievable. 2602cals It is a current trend when discussing the practice of BMI: 22.74 BMR: 1427cals contemporary art curatorship, to point out that the noun W: 72cm T: 59cm C: 88cm ‘curate’ derives from either the Medieval Latin word P: 200g C: 113g F: 150g curatus, which means ‘to care’, or the Latin word curare Lift: 5X1hr AM meaning ‘to take care of’. But care according to whom? 01.05.14 21% bf 65.8kg 171cm And who exactly gets to determine what (or who) is 2602cals worthy of being taken care of? Unfortunately the terms BMI: 22.5 BMR: 1412.9cals on which the concept of curatorial care itself is premised W: 72cm T: 59cm C: 87cm are very rarely mentioned, simply assumed. Care as P: 200g C: 113g F: 150g on-trend soundbite, a shorthand appeal to indicate an Lift: 5X1hr AM apparent sensitivity to context and a willingness to 03.07.14 consider the preservation of relationships as a moral 21% bf 65.8kg 171cm priority. Curatorial care is now the mark of the civilised, 2602cals a cultivated awareness of a long list of fashionable BMI: 22.5 BMR: 1412.9cals W: 72cm T: 59cm C: 87cm things. P: 200g C: 113g F: 150g Puig de la Bellacasa discusses such mawkishly trivial 05.08.14 appeals to care as an indication of an age of watered- 21% bf 65.8kg 171cm down ethics, what she terms: biopolitcal morality. 2210cals Curatorial care as biopolitcal morality is an impoverished BMI: 22.5 BMR: 1403.4cals economy of care, one that emerges from, and is a W: 72cm T: 59cm C: 87cm reflection of, broader historical, material conditions and P: 165g C: 50g F: 150g institutional arrangements regarding what a good life HIIT: 20minsX3 AM Lift: 5X1hr AM is and how such a good life should come into being. I 08.09.14 am not arguing here over who cares and who doesn’t. 20.5% bf 65.6kg 171cm Instead I am brooding over what we believe care

18 2210cals consists of when it comes to determining what, who, and BMI: 22.5 SMM: 28.7kg how we come to encounter, perceive, know and produce BMR: 1496cals particular relations to things via curatorial practices in W: 71cm T: 58.5cm C: an ever-increasing precarious world. 87cm P: 165g C: 50g F: 150g So how might one approach the practice of curatorial Cardio: 20minsX2 AM care in a more embodied and situated manner, to start HIIT: 20minsX3 AM from the premise of challenging viewers to become more Lift: 5X1hr AM curious about the world-making effects of their own caring 16.10.14 practices? Or, following Donna Haraway, to conceptually, 18% bf 61.5kg 171cm aesthetically and ethically pose the question: 2210cals What worlds do you care for? BMI: 21.1 SMM: 28kg BMR: 1459cals W: 70.5cm T: 58cm C: INDETERMINATE PRESENCES 87cm An aesthetics of care, or, creating alternative conditions P: 165g C: 50g F: 150g Cardio: 20minsX2 AM for living otherwise HIIT: 20minsX3 AM Aesthetics are deeply connected to our experience of the Lift: 5X1hr AM world. Aesthetic experiences curated with an intention 16.12.14 to re-habituate sensorium can activate an embodied 18.1%bf 59.1kg 171cm questioning as to how we come to encounter, perceive, 2210cals know, and produce particular relations to things. An BMI: 20.3 SMM: 26.5kg aesthetics of care as a curatorial principle, conceptualised BMR: 1415cals as an ethically situated and informed, hands-on W: 69.5cm T: 57cm C: 95cm mindfulness to the inherent difficulties in being together, P: 165g C: 50g F: 150g offers an embodied point of departure for thinking about, Lift: 5X1hr AM playing with, laboring in, brooding over, what is at stake 28.02.15 when we ask: what (and whose) worlds do you care for? 16%bf 59.3kg 171cm The Patient’s curator Bec Dean employs an aesthetically 2210cals driven and confronting curatorial treatment of life BMI: 20.4 SMM: 27.7kg to activate an uneasy, yet critical and embodied BMR: 1445cals W: 68cm T: 56cm C: 95cm engagement with the precarity of human, more-than- P: 165g C: 50g F: 150g human and non-human others. By presenting art works Lift: 5X1hr AM that utilise wet visceral living material, bodily processes, 13.05.15 physical sensations, as well as lab-based care-practices

19 17.1% bf 59.7kg 171cm required to keep fleshy biological matter ‘alive’, 1800cals The Patient disturbs perceptions in a manner that BMI: 20.5 SMM: 27.5kg BMR: highlights the need for particular and situated care, 1439cals an awareness of how caring over here could kill W: 67cm T: 55cm C: 95cm over there. Offering a variety of precariously fleshy B: 94cm narratives, encounters and environments that ooze P: 165g C: 60g F: 100g HIIT: 20minsX2 AM out of embodied experiences of illness, suffering, Cardio: 20minsX2 AM liminality, pain, disability, near-death experiences Lift: 5X1hr AM and more-than-human striving, The Patient brings 01.07.15 into sharp focus how care practices are intimately 15.8% bf 58kg 171cm entangled in the ongoing re-making of our world. 1800cals There are all kinds of practices, actions, encounters BMI: 19.84 and experiences, that for good or ill, lie so far outside W: 65cm T: 53cm C: 95cm HIIT: 20minsX2 AM our expected boundaries of ‘normal’ that they force Lift: 5X1hr AM us, in acknowledging that they have occurred, to 05.09.15 restructure our understandings of life. They cannot 59kg 171cm 1800cals be simply assimilated. We have to make room for P: 165g C: 60g F: 100g them. The Patient’s ‘making visible’ of particular W: 65cm T: 55cm C: 95.5cm aesthetic forms of life is not meant to activate mere B: 94.5cm empathy, or elicit a reaction to smooth over their HIIT: 20minsX2 AM debility and precariousness. Instead, by bringing into Lift: 5X1hr AM the public domain particular modes of living and 10.11.15 63kg 171cm 2000cals contextual practices of care not rooted in normative P: 165g C: 155g F: 80g good life fantasies, The Patient disturbs our taken- W: 68cm T: 56cm C: 96cm for-grantedness of ‘life’ and makes our world strange. B: 95cm Starting from the premise that human, more-than- HIIT: 20minsX2 AM human, and non-human worlds are fundamentally Lift: 5X1hr AM interdependent and vulnerable, The Patient reminds 22.12.15 us that in an age of overwhelming precarity, care is a 65kg 171cm 1820cals material, ethical and affective practice that requires W: 68cm T: 56cm C: 96cm us to stay with the trouble that comes with trying B: 96cm P: 165g C: 155g F: 60g to reimagine conditions of living otherwise, one that HIIT: 20minsX2 AM might allow us all the chance at a different kind of Lift: 5X1hr AM flourishing.

20 14.01.16 1There are stories we tell ourselves about how subjectivity takes 15.5% bf 64kg 171cm 1820cals place. I am suspicious of their repetition as they tap tap away W: 68cm T: 55.5cm C: 96.5cm inside my head. Habitually subjected to calculations and desires B: 96cm (calculated desires? Desiring calculations?), the tap tap tapping P: 165g C: 155g F: 60g of the numbers my body generates tells me to take care, get a HIIT: 20minsX2 AM life, and my body (and mind) capitulates. Always via hindsight Lift: 5X1hr AM I hesitate. Uncertainties arise after, amongst a questioning 10.02.16 turbulence: what (or who?) here is at stake for my care? Multiple 14.8%bf 63kg 171cm 1820cals competing and contradictory disciplinary apparatuses cut deep. W: 67.5cm T: 55cm C: 96.5cm Noticing the sensation of the drip rather than the weeping numb B: 96cm wound, I remember too late: it is always the body (but not just P: 165g C: 155g F: 60g my body I think I remember too late?) that provides the edge HIIT: 20minsX3 AM that power seeks to grasp. I remain subject to an extraordinary Lift: 4X1hr AM pressure to name myself as failure. Caught in the thrall of failure’s Lift: 4X1hr PM affect, and the all-consuming drive to thrive, I don’t see, don’t 10.04.16 feel, don’t don’t know what (or who) I step on, crush, unknowingly 13.8%bf 63kg 171cm 1820cals use. I do not grieve in that moment, other bodies, other lives that W: 66.5cm T: 54.4cm C: come at the cost of my striving. I see the cost of care at pace, in 96.5cm B: 96.5cm rear view, receding, and I swear I tell myself to try to remember, P: 165g C: 155g F: 60g to take/use more care for next time, to pay attention to the price HIIT: 20minsX3 AM care exacts. Care sifts and falls and grips. I find myself seeing the Lift: 4X1hr AM cost of care at pace, in rear view, receding, more often than I like Lift: 4X1hr PM to remember. Too late. Always too late. It’s not much, I admit, this 10.06.16 stuttering, drifting, holding on, treading water, floating, doggy 13.5% bf 64kg 171cm 2000cals paddling, improvising, coasting, tottering, wandering, maintaining, W: 65cm T: 54cm C: 97cm B: surviving, struggling. But I am not the disposable, ungrievable. I 97cm am not claiming my attention to care and its cost is ‘a start’. It is P: 165kg C: 155g F: 80g simply a slippage. Yet, these slippages, these temporary moments HIIT: 20minsX3 AM could become spaces where what emerges are other possibilities, Cardio: 20minsX2AM histories, collectivities, agencies, temporalities and relationalities. Lift: 4X1hr AM If, I am vigilant. If, I take care. If, I remember that a way of caring over here could kill over there. I so do not want to participate in care-washing practices. God, care is hard work. The price it exacts is shattering.

21 SEX, CANCER AND COCKTAILS

Brian Lobel

Throughout my time performing my & Cocktails, I invited 20-25 audience cancer-related solo work (see BALL members to a real home, served them & Other Funny Stories About Cancer, cocktails, and facilitated presentations 2003-present), one thing always held from sexual health doctors, cancer nurses, true regardless of location: if there was sex toy sellers and people with cancer. not an explicit question & answer period/ In the world of cancer, sex is always talkback after the show, I would inevitably talked about in relation to fertility – be greeted (for 30 minutes, up to 2 hours) how to bank sperm, freeze eggs, etc, post-show with questions, stories and and rarely is there talk about pleasure: discussion with audience members. These audience members’ attendance at my having it, not having it, negotiating it shows was, in the first place, predicated with partners, strangers, etc. So we on their personal connection to cancer – got together in the style of an Ann either from their own medical history or Summers or Tupperware party, talked the medical history of their loved ones. about (conversational and sexual) These questions, stories and discussions lubrication and (medical and sexual) often became the most important part experimentation and just shared space, of the tours or workshops – and yet, I asked questions, laughed – and cried still found myself, night after night, in a quite a bit. After the first night – even spotlight, in front of a darkened theatre, when my cocktails didn’t come out on monologuing about my life and my time, and people had a hard time finding history with illness. the house – when people wouldn’t leave So, in 2014, tired of talking ad nauseam because they had too many questions, I about my own history with cancer, I knew I had done something right by just began a series of interactive performance shutting the fuck up. Audience members, events which were designed to give when given the chance to speak and audience members the opportunity, first share, are significantly more interesting and foremost, to share, ask questions, than I’ll ever be. and have their voices and opinions heard and witnessed by others. The first in My contribution to Sex, Cancer & these series was Sex, Cancer & Cocktails, Cocktails was the following essay – first produced for the SICK! Festival in originally performed without everyone Manchester and Brighton, supported having a pseudonym (as are here by Wellcome Trust. For Sex, Cancer presented).

22 TIMELINE OF A SEX LIFE 1999

1981 While living in Jerusalem, I begin dating a young woman Adina, while being actively I am born, biologically male, to two in love with my first male crush, Adir. He loving heterosexual parents, in Upstate is an outspoken homophobe. New York.

June 2000 1986 I return to Camp Givah, where I now fall I am photographed dressed up in my in love with the new Camp Nurse, Ron, we female cousin’s clothes. First recorded do not make out. incident of drag, first hint of a sexuality other than purely heterosexual. January 2000 I kiss my first boy, correction, a man, correction, a 35-year old Classics 1994 instructor at the University of Michigan. I become a man, according to Jewish law, at my Bar Mitzvah. I am yet to have an January 2000 orgasm. Classics instructor tells me, 14 hours after sex, that if I repeat anything that 1998 happened between us, he would kill me. At 17, I have my first kiss with Maya, the

Camp Nurse who I work with at Camp January 2000 Givah. She was 24, and after kissing on I write down Classics instructors name three separate occasions, I end things and put it in a paper in my desk with a with her as I think she is strange for being description of what happened, just in attracted to a 17 year old, or to me. case I ever disappeared.

23 February 2000 June 2001

I make my first trip to London where I The brown spots continue, and I get an meet a beautiful bartender, Daniel, and STD test as I believe the brown spot to we have a positive sexual experience. I be discharge. I am told that I should not have still told no one about my sexuality. have unprotected oral sex.

December 2000 August 2001 My friend Lina is diagnosed with terminal I notice two cysts behind my nipples. esophogeal cancer at 18 years old. The Fearing breast cancer – my friend day before she dies, we kiss. It is a small had died of stranger diagnosis just kiss, but not insignificant. previously – I have it checked by my family physician. All is considered June 2001 normal. I live in NYC for the summer, undertaking an internship. I am living alone in NYC September 2001 and am not financially independent. It is The week before my flight to Miami to a great time. During sex with Nelson, a see Reynaldo, all planes are grounded wedding dress accessory maker, I notice because of September 11th. We decide brown spots in my semen. to wait to reschedule.

June 2001 (later) September 2001 I fall in love with a man named Reynaldo while dancing in Lincoln Center. We The brown spots continue and I go to spend a week together and plan to see the University Health Service. Yet again, each other in September in Miami. He no one touches my genitals, but give me buys me a plane ticket. yet another lecture about safe sex.

24 October 2001 My testicle is removed, my genitals look I tell my friends about Reynaldo, and funny. The scar is puffy, I think everyone about my queerness. There is relief in will see it. this. I have sex with Rob, who lives in my I have sex with Rob again. He is a very shared house, he is very kind. kind lover and makes me feel good about my body. I return to my parents home of Albany, October 14, 2001 New York. I am so incredibly unhorny, I’ve I am masturbating when I notice that my never been so un-horny in my life. right testicle is incredibly big and hard. I take a trip to NYC to see Reynaldo. We have sex for about 10 minutes. It is painful, Halloween 2001 and unsexy. We lay together and it is fine. I return to the same doctor as the month I return back to Albany on the bus, and on before complaining of the testicle. the journey home, my diarrhea is so bad

That day I am in the hospital with blood tests, that I need to be hospitalized. ultrasounds, chest xrays. CT scans come I am told that I need to have abdominal the next day. The surgery for my testicular surgery, and that the abdominal surgery – cancer is planning for 3 days. I finally call to called an RPLND – might leave me unable tell my parents, as I wanted to wait until I had to ejaculate. I decide that I need to have news. My mother has pleurisy when I call, and sex with a woman as I’m still a ‘virgin’. breathes heavily. When I hear silence after I I return to my University town (Ann Arbor) tell her the news, I think I’ve killed her. and pursue 3 women to have sex with. They I need to go for a breast biopsy about are all unavailable… or uninterested… or the cysts. Sitting in the overcrowded all- could tell how misogynistic my journey was. female women’s health clinic, I feel quite I have sex with the Classics instructor. out of place. When my name is called I weigh 50lbs less than normal, and am almost instantly, all the patiently waiting hairless. He doesn’t ask me how I am, or women look at me like I’m the devil. why I have no hair.

25 I fall in love with the man sitting next scars, perhaps out of common courtesy, to me at the Vagina Monologues – and which Americans don’t value. realise that I look so deathly that I am I learn that Vicky, has been attacked probably unfuckable. on the street in Miami, leaving her with Five weeks after my surgery, still without a long term brain injury. While life is an orgasm, I finally have a wet dream. I difficult, she also, because of the way am thankful I haven’t lost my ability to the injury occurred, has no experience ejaculate. of sadness anymore and lives her life Six months later, I have sex with Vicky, the as though everything is fantastic. It is woman who moved into Rob’s room when strange when she comes to visit London, he moved out, and she is an amazing as it is a very stoic city, but we have a woman who I date for six months. great time. We sleep in the same bed, but there is nothing sexual. I think everyone sees my scars every time I have sex. I tend to withhold sex for a That first great boyfriend and best friend while with people I like, and also become dies in a freak accident, and I question more instantly promiscuous, hoping that I my body all over again. I become will never see people again if they wonder uncomfortable. what’s up with my body. A man I meet professionally learns that I meet a beautiful man who values my I have a history of testicular cancer, he body, and also has a history of illness, and asks me what my genitals look like as a we have an incredible romance. I fuck it precursor to sex. It is strangely arousing up royally, I am only 25 years old. to have someone use the word cancer to get my pants off. We date again, and this time break up more kindly. We stay as best friends. I move to London to pursue health 2014 insurance on the NHS and further academic I feel a bump on my chest and report it and artistic pursuits. I begin to date British to the NHS. Within 4 weeks, I have a CT men, with mixed results. Few ask about my scan, MRI, 2 ultrasounds and multiple

26 bloodtests. When I arrive for the February 2016 biopsy, I learn that the bump has My friend Jon, who had come to Sex, disappeared. I wanted not to be single Cancer & Cocktails in Brighton, marries his during this time, but also couldn’t partner in hospice before passing away. imagine having anyone near my body A man who I had slept with multiple at all until I knew what was happening times and I – 1 year after meeting – inside of it. discover that we had a similarly horrible I hook up with a man who came to see experience with testicular cancer. WE my Fun with Cancer Patients exhibition HAD SEEN EACH OTHER NAKED. LOTS. I – a Swedish man who works in trans guess my scars have faded, or maybe I’ve health. He was very nice indeed. It’s become a better lover so people don’t weird that cancer is my career. have time to think or notice.

2015 While touring my Fun with Cancer Patients project in Birmingham and Bodies grow and change so much over time, I Belgium, I sleep with a number of art cannot even begin to chart where the cancer programmers whom I meet when they begins, ends, nor where or how the spectre of its affects appear and disappear. After all is see my exhibition about cancer. said and done, though, upon reflection, I can I create a show called Sex, Cancer and confidently say that this body has been touched Cocktails in Manchester and Brighton. – literally, medically, sexually and kindly – by In Brighton, my friend Jon – with many. And that’s complicated, difficult, and whom I always had a healthy flirtation actually very very good. – comes with his partner as he had himself been diagnosed with prostate cancer. I continue to have an active, and sometimes meaningful love life.

27 28 ARTISTS & WORKS

29 INGRID BACHMANN b. 1958, London, England. Lives and works in Montreal, Canada.

Ingrid Bachmann is an interdisciplinary for listening to the narratives of heart artist and researcher who explores transplant recipients. The listener hears the complicated relationship between these stories intimately in their body the material and virtual realms. Her and through their body. Bone transducer works exists at the crossroads of the sensors are used to conduct the sound technological, the generative, the through the bones using the skull as the performative and the corporeal. In the resonating chamber. Only the person piece A-Part of Me (2014), the body is holding the transducer to his/her bones used both as the means and the site can hear the sound.

30 A-Part of Me, 2014 Kolozsvari and Mark Lowe. Bone transducer sensors, electronics, The PITH (Process of Incorporating a sound recordings. Transplanted Heart) Team: Dr. Heather Circuit design and electronics by Ross, Dr. Margrit Shildrick, Dr. Susan Martin Peach Abbey, Dr. Patricia McKeever, Dr. (Installation image page 30 by Jennifer Poole, Enza DeLuca. Silversalt Photography) This project has been supported Courtesy the artist. by SSHRC (Social Sciences and Humanities Research Council), Conseil Acknowledgements des arts et des lettres du Québec and Project collaborators Dana Dal Bo, Concordia University. Wojtek Gwiazda, Emily Jan, Csenge

31 GUY BEN-ARY

Nathan Thompson, Andrew Fitch, Darren Moore, Douglas Bakkum, Stuart Hodgetts & Mike Edel

Guy Ben-Ary b. 1967, Los Angeles, USA. Lives and works in Perth, Australia.

CellF is the world’s first neural synthesiser. product of a team of artists, designers, Its ‘brain’ is made of biological neural musicians and scientists. networks that grow in a Petri dish, For The Patient, cellF performed a controlling a ‘body’ that is made of an three-night concert series in Sydney array of analogue modular synthesizers. with experimental Australian musicians With this form cellF is an autonomous including Chris Abrahams, Jon Rose, instrument that can play with human Clayton Thomas and Darren Moore, and musicians in real time. Consisting of a Ensemble Offspring. neural network, bio-engineered from the skin cells of Guy Ben-Ary, an array While the idea for cellF stemmed from of analogue synthesisers and various the artist’s desire to extend his biological analogue interfaces, cellF is a collaborative material into a different posthuman form,

32 a “rock star in a petri-dish” – creating a cellF, 2015 living self-portrait of virtuosic potential Documentation of the making of cellF, audio and video Courtesy the artists. – the work poses an array of ethical (Image page 32 of cellF and Chris Abrahams by questions and explores the possibilities Rafaela Pandolfini) for the prolongment of human life. In Acknowledgements making cellF, Ben-Ary became a short- This project has been assisted by the Australian Government term patient, but a long-term carer for through the Australia Council, its arts funding and advisory hundreds of tissue cultures, each with body and the Government of Western Australia through the capacity to be empowered with a the Department of Culture and the Arts. cellF is supported by SymbioticA, UWA; LaSalle College, Singapore. Sydney different body, and to live for an indefinite performance supported by the National Art School, Sydney; period of time. Biomedical Sciences, UNSW and Performance Space.

33 JOHN A DOUGLAS b. 1960, Sydney, Australia. Lives and works in Sydney.

In this trilogy of works, made between Fire (variations) navigates through the 2012 to date, John A Douglas engages complex and challenging terrain of organ with his lived experience as a renal patient. transplantation, as a metaphysical journey. In the large scale photographs of Body Circles of Fire (variations) is an ongoing, Fluid – The Seven Cycles, the golden figure iterative multi channel video experiment of a humanoid interacts impossibly with that will aggregate and change each different environmental extremes. In The time it is exhibited. Using the narrative Visceral Garden, Douglas’ encounters with structure of Dante’s Inferno as a template, specimens of pathology are rendered as Douglas performs interpretations of luminous imaginary landscapes. The artist his transplant experience on location in connects the internal and external states the Karakum Desert, and in the ancient of being, as a chronically ill patient, as fortresses in Turkmenistan. He also entering an underworld from where there was given permission to perform on is no return. The latest work Circles of the sacred Okanagan medicine lake of

34 the Skylx people in Canada. The film is highly collaborative and interdisciplinary, incorporating the wet processes of tissue culture in the laboratory with the fiery, elemental work of making glass in a furnace. His external and internal landscapes are then enfolded into to a highly stylised performance of transplantation in an ‘operating theatre’.

35 Circles of Fire – (variations) 2016 Videography: John A Douglas, Dara Gil Two channel synchronised 4K to HD 1080p Lighting: John A Douglas, Mark Mitchell video with sound Editing, Compositing and Colour Grading: John (Image page 34, detail page 35) A Douglas Soundtrack: Justin Ashworth Courtesy the artist and Chalkhorse Gallery. Arrangements, Sound Design and Mixing: Justin

Performers: John A Douglas with Celeste Ashworth and John A Douglas Props Design Aldahn, Stella Topaz, Yiorgos Zafariou and Production: John A Douglas, Nadège Performance Director: Sue Healey Desgenétez (glass objects) and Yiorgos Zafiriou

36 Acknowledgements The Visceral Garden – Landscape and

First Nation Okanagan custodian of Spotted Lake Specimen, 2014 (Klil’x), Alex Louis (Senklip Skalwx) for permission to LED backlit Duraclear, timber, acrylic, perform and shoot at Spotted Lake, BC, Canada; rechargeable Artik Gubaev and Batyr Nitazov for clearance and transport in Turkmenistan; batteries, 30 x 30 x 14cm, 2014. Dr Stuart Hodgetts, Assoc. Prof. Silvana Gaudieri, Blood of Archne, Elysium Fields, Styx Guy Ben-Ary and Celeste Wale for assistance with Asthmatic, Nephrotic, Parathyroid the artist’s T-cell experiments and microscopy and Renal, Bronchial, Osteoperosis SymbioticA Lab, UWA. Dr Yit Heng Chooi for access to mycology specimens at UWA. The artist would like to acknowledge and pay respect Acknowledgements to the following Aboriginal First Nations: Okanagan Courtesy the artist and Chalkhorse Gallery. Syilx (BC, Canada) and Nyungar Boodjar (WA, Special thanks to Derek Williamson, Australia) and Gadigal Eora (Sydney, Australia) on whose land this work was recorded and performed. Museum of Human Disease, UNSW Medicine This project has been assisted by the Australian This project has been assisted by the

Government through the Australia Council, its arts Australian Government through the Australia funding and advisory body. Council, its arts funding and advisory body.

Body Fluid – The Seven Cycles, 2012 Analogue C-Type photographs on metallic paper The Intruder, 2016 and aluminium, 100 x 100cm Glass, dimensions variable From left to right: The Offering, Replenish, Ascension Acknowledgements (Pictured on previous page) In collaboration with Nadège Desgenétez.

Acknowledgements The artists gratefully acknowledges the Courtesy the artist and Chalkhorse Gallery. support of The School of Art, ANU Canberra, The artist would like to acknowledge and pay ACT. This project has been assisted by the respect to the following Aboriginal nations; Latje Latje, Kurientje and Gadubanud, on whose land the Australian Government through the Australia works were recorded and performed. Council, its arts funding and advisory body.

37 BOB FLANAGAN & SHEREE ROSE

Bob Flanagan Sheree Rose b. 1952, Los Angeles, USA. b. 1941, Los Angeles, USA. d. 1996, Los Angeles. Lives and works in Los Angeles.

From 1981 until with his death in 1996, Wall of Pain, 1982/2016 800 black and white photographs, Sheree Rose collaborated with her syringe needles partner, Bob Flanagan, in a series of 355.5 x 320 cm photographs, videos and performances that documented their sado-masochistic Documentary images from the relationship as well as the impact of his exhibition Visiting Hours, cystic fibrosis on both their artistic and 1993-1995 personal lives. Visiting Hours is arguably 22 colour photographs the pair’s most famous work. This major 23 x 25 cm collaboration premiered in 1993 at the Photographs by Sheree Rose, Santa Monica Museum, California before Keitaro Yoshioka and Molly Shore (Images page 38 and 39 by touring in the United States. Silversalt Photography)

38 Alphabet Block Wall, 1992 Books of poetry by Bob Flanagan Wood, paint The Wedding of Everything, 1983 This sample of building blocks is Sherwood Press, Los Angeles taken from an original Slave Sonnets, 1986 artwork made with 1,400 wooden Cold Calm Press, Los Angeles blocks. Love is Still Possible in this Junky World, 2009 Country Club Projects, Los Angeles

Acknowledgements Courtesy Sheree Rose and The One Archives, Los Angeles

39 BRENTON HEATH-KERR b. 1962, Sydney, Australia. d. 1995, Sydney.

Brenton Heath-Kerr was a performance that obfuscated his own features. Many of artist and AIDS activist, until his death his iconic costumes have been collected at the age of 33 from an AIDS-related by the Museum of Applied Arts and illness. Heath-Kerr made costumes and Sciences, Sydney. performances for the gay and lesbian He is represented by three photographs club scene in Sydney and was later taken by John Webber of the costumes presented in contemporary art contexts including the National Gallery of Australia. Homosapien (1994) and Self Portrait in Heath-Kerr’s work explored identity and Latex (1994), and a video, The Man in the experience – including his experience as a Irony Mask (1998) made after Heath-Kerr’s patient – through costume and characters death, by filmmaker Paul Andrew.

40 Man in the Irony Mask, 1998 Homosapien, 1994 Documentary video, 28:00 min Colour photograph, 60 x 60cm Director: Paul Andrew Photograph by John Webber. Producer: Kath Shelper (Above) DOP: Joanne Parker Sound: Leo Sullivan Untitled, 1994 Editor and Graphics: Dave Davidson Two untitled portraits of Brenton Composers: Paul Mac & Andy Rantzen Heath-Kerr wearing Self Portrait in Assistant: Tamara Sperling Latex (1994) Interpreter: Phillip Richards Colour photograph, 60 x 60cm Photographs by John Webber. Acknowledgements (Detail page 40) Courtesy the artists and loaned from ACMI, Melbourne.

41 CAROL JERREMS b. 1949, Melbourne, Australia. d. 1980, Melbourne.

Carol Jerrems’ black and white, surroundings, other patients, and the autobiographical portraits and doctors and nurses treating her during a photographs of young people and lengthy, four-month stay for treatment of subcultures of the 1970s in Australia Bud-Chiari Syndrome in Hobart Hospital. resonated with the rapid social change Jerrems died the following year from her and spirit of resistance of the times. illness. In the Royal Hobart Hospital series, The photographs are accompanied by Jerrems continued to take photographs extracts of Jerrems’ hospital journal, also of herself, her changing body, her clinical called The Patient.

42 Twelve works from the Royal Hobart Hospital Series, 1979 Printed by Roger Scott, 2004 Gelatin silver photographs 20 x 25.5 cm Exhibited with excerpts from Carol Jerrems’ hospital diary, The Patient

Acknowledgements Courtesy Ken Jerrems and the Estate of Lance Jerrems with thanks to the Heide Museum of Modern Art, Melbourne.

43 EUGENIE LEE b. 1974, Seoul, South Korea. Lives and works in Sydney.

Seeing is Believing is an experimental participant’s multisensory experience art and science collaborative project using the latest technologies. that conveys a type of chronic pain called Complex Regional Pain Syndrome The project is based on neuroscience (CRPS). Through a one-on-one interaction research showing that pain is integrated between the artist and a participant, with the person’s environment. It can be the interactive performance installation influenced by many factors, including conveys a metaphorical experience vision, touch, hearing, expectations and/ of chronic pain by manipulating each or previous experiences.

44 Seeing is Believing is an exercise to demonstrate, contrary to common belief, that pain reflects only the amount of tissue damage, that the brain can still produce perceptions of pain even in the absence of physical injury. It is also an artistic way of externalising an inherently internal experience, so that visitors may experience something of what it is like to have CRPS.

45 Seeing is Believing, 2016 New media artist: Dr Andrew Burrell Multimedia, participatory installation, ‘mirage machine’, virtual reality environment, Oculus Students from the University of Sydney: Rift and anechoic chamber Electrical Engineering: Tom Hazell (Installation images by Silversalt Photography, Science Talented Student Program: Rosie Virtual Reality image on page 45 by Andrew Menzies Burrell) Psychology: Blake Segula Architectural Science: Meisha Stephens Acknowledgements Architecture: Matthew Bolton and Cassandra This work has been developed in collaboration Prasad Design Computing: Rob Yuan with Dr Tarsha Stanton, Dr Valeria Bellan and With very special thanks to Bec Dean, Vicky Professor Lorimer Moseley from the University Sowry, Mark Stone, Hayley Stone, Richard of South Australia; Stuart Esdaile from the Stone, Patricia Stone, Jennifer Hunt, Shannon University of Sydney; Dr. Roger Newport and Hunt, Dr Susan Evans, Professor Roland Sussex, Hayley Thair from the University of Nottingham; Mike Buick, Paul Greedy, Dara Gill, Associate McAuley Group from Neuroscience Research Professor William Martens, Craig Keeler-Milne, Australia (NeuRA). Professor Philip Poronnik, Carol Carpenter,

46 Susan Thompson, Natalie Dean, Astrid Clark, Maria Clark, Flavia Abdurahman, Flavia Di Pietro, Matthew Bagg, Martin Rabey, Sarah Houbolt, Dr Trish Adams, BIM team, McAuley team and UNSW installation crew. Seeing is Believing is supported by Australian Network for Art and Technology (ANAT) - Lee is a recipient of the Synapse Residency Program 2015. This project is also supported by; AARTS Small Grant 2016, a devolved funding program administered by Accessible Arts (AARTS) on behalf of the Lifetime Care and Support Authority (LTCSA), and supported by 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.

47 DAVID McDIARMID b. 1952, Hobart, Australia. d. 1995, Sydney.

David McDiarmid was a celebrated with the HIV/AIDS crisis. In The Rainbow Australian artist, painter, activist, designer Aphorism Series (1994), McDiarmid’s across print media and textiles artistic biting, witty and incendiary statements, director of the Sydney Gay and Lesbian which counteract the conciliatory Mardi Gras. His vibrant work engaged language employed around sickness, are with homosexual male identity politics, rendered in large, rainbow typeface over gay liberation and activism and later a rainbow background.

48 Rainbow Aphorism Series, 1994 Exhibition prints (2015) Inkjet print on Platine fibre cotton rag 63 x 43.5cm (Image page 48 by Silversalt Photography)

Acknowledgements Courtesy the David McDiarmid Estate.

49 ORLAN b. 1947, Saint-Étienne, France. Lives and works in Los Angeles, New York and Paris.

ORLAN is a French conceptual and Omnipresence (1993), explores the performance artist. Since 1963 she material and cultural transformation of has created series of photographs, the body as image and flesh. The recent installations, sculptures, texts, objects, work Liberty Flayed (2013), engages with films and performances. She is well augmentation of the body and its layers known as the first artist to use plastic through the possibilities of the digital. surgery, and to collaborate with medical ORLAN makes her own body the medium, surgeons in the making of her work. the raw material, and the visual support Her 7th ‘surgery-performance’ titled of her work.

50 7th Surgery-Performance Titled 4th Surgery-Performance Titled Omniprésence, 1993 Successful Operation Video, 82:51 min 8th December, 1991 (Pictured this page and page 52) Liberty Flayed, 2013 Video loop Acknowledgements All works courtesy the artist.

51 HELEN PYNOR b. 1964, Sydney, Australia. Lives and works in London and Sydney.

Helen Pynor’s work explores places: life and death become folds that philosophically and experientially continuously fall through each other. ambiguous zones such as the life-death Pynor developed the work during an boundary and the inter-subjective extended research residency in 2015 at borderlands of organ transplantation. The Max Planck Institute of Molecular In The End is a Distant Memory Pynor Cell Biology and Genetics in Dresden, presents death as an extended durational Germany, working in the laboratory Dr process, rather than an event that takes Jochen Rink, a regeneration biologist place in a moment of time. It speaks to who studies the capacity for organisms to the indefinable edges of life and death, regenerate their body after catastrophic and life’s survival in the most unlikely injury. Rink’s speculation that there might

52 still be living chicken cells inside chicken purchased at a Dresden supermarket. meat on the supermarket shelf became Pynor cultured these ‘ghost cells’ and the prompt for Pynor’s new research. their cellular descendants for 3 months, Pynor drew on her previous science undertaking Differential Interference training to undertake a systematic study Contrast microscopy of the cells growing of this speculation using Tissue Culture and dividing in culture. techniques, beginning with chick embryos The End is a Distant Memory takes and ‘freshly dead’ chickens obtained viewers through the spaces of life (the from an abattoir, and ending with the farm), death (the abattoir), disconnection successful extraction of living chicken (the supermarket) and regeneration (the fibroblast cells from chicken meat she laboratory).

53 The End is a Distant Memory, 2016 Videography: 3.Etage Filmproduktion (Frank Video, sound, photography and object Beitlich, Susanne Hörenz) installation Sound Field Recording: Cristian Spataro Video Post-Production and Editing: Dominic Sound: James Brown Kirkwood Scientific Collaborators: Dr Jochen Rink, Stills Photography: Helen Pynor, Jürgen Dr Britta Schroth-Diez and Dr Jan Peychl from Jeibmann, Ronald Schemmel the Max Planck Institute of Molecular Cell Stills Digital File Preparation: Richard Luxton, Biology and Genetics, Dresden, Germany Warren Macris Cell Tissue Culture: Helen Pynor Printing: Warren Macris Differential Interference Contrast Microscopy: Framing: Graphic Art Mount Dr Britta Schroth-Diez, Dr Jan Peychl and Helen Pynor Shot on location in Dresden and Großenhain, Video Direction: Helen Pynor Germany.

54 Rink Lab, Light Microscopy Facility, Media The bird used in the ‘falling bird’ sequence was Technologies and Outreach at the Max Planck obtained from an abattoir and was not killed Institute of Molecular Cell Biology and Genetics, during the filming of this sequence. Dresden, Christian Cohrs, Herr Noack, Alex Time-lapse microscopy footage depicts living Riedel, Jürgen Jeibmann, Ronald Schemmel, chicken fibroblast cells, extracted from chicken Victoria Spence and Bec Dean. meat bought at a supermarket. Cells were This installation forms part of an ongoing extracted and maintained in vitro for 3 months investigation into the ambiguity of the life-death using Cell Tissue Culture techniques. boundary with survivors of near death and performance makers Branch Nebula (Lee Wilson

Acknowledgements and Mirabelle Wouters). All collaborators and Heino Andreas, Stephanie This project has been assisted by the Australian von Kannen, Robert Bayersdorf, James Cleland, Government through the Australia Council, its Daphne Myers, Kostas Margitudis, Julia Eichhorn, arts funding and advisory body.

55 JO SPENCE b. 1934, London, UK. d. 1992, Hampstead.

Jo Spence was an integral figure within Dis-ease Spence explores the gendered photographic discourse and feminism in experience, subjectivity and agency of the UK and internationally from the 1970s the female patient. In this case, taking onwards. Through her diverse projects control of her own representation. she was well known for her political and socially engaged approach to photography, and later the representation of her own struggles with breast cancer. In the staged portraits of Narratives of

56 Narratives of Dis-ease, 1990 Narratives of Dis-ease: Excised, Exiled, Expunged, Expected, Included Five colour photographs 63.5 x 41cm Collaboration with Dr Tim Sheard (Image above by Silversalt Photography)

Acknowledgements Copyright the Estate of Jo Spence. Courtesy Richard Saltoun Gallery, London.

57 TIM WAINWRIGHT & JOHN WYNNE

Tim Wainwright John Wynne b. 1954, Brisbane, Australia. b. 1957, RCAF Zweibrücken, Germany. Lives and works in London, UK. Lives and works in London, UK.

John Wynne and Tim Wainwright “Through all the differences and similarities were artists-in-residence for a year at of sound and vision, seeing and hearing, Harefield Hospital, near London, one looking and listening, a rapprochement of the world’s leading centres for heart emerges in the collaboration. The insistent and lung transplants. They recorded stillness of a photograph hovers in and and photographed patients, the devices out of the temporal movement of spoken attached to or implanted in them, and the language, but both add a powerful sense hospital itself. This video is one of several of human presence and individuality to collaborative outputs from the project. each other.” (David Toop)

58 Transplant, 2008 Video with sound (Image detail on page 58)

Courtesy the artists.

59 60 CONTRIBUTOR BIOGRAPHIES

61 ARTIST BIOGRAPHIES

INGRID BACHMANN He received a PhD in Neuroengineering from the Georgia Institute of Technology and

Ingrid Bachmann is a multi-disciplinary Emory University in Atlanta, GA, USA. His installation artist whose interests span interdisciplinary background includes training in obsolete technologies and digital media. Her neuroscience, mechanical engineering, robotics, work combines new media with traditional art and artificial intelligence. He currently leads practices and explores the shifting relationships projects to find the fundamental rules neurons between artist, audience and artefact. use to communicate with each other and how such rules can scale to produce learning,

She has exhibited her work nationally and memory, and creativity. internationally in exhibitions and festivals in Canada, Europe, the United States, Asia, and Latin America including the 11th Havana Biennial GUY BEN-ARY (2012), Manifestation International d’art 6, Québec (2012), Lab 30, Augsburg (2010), and the Guy Ben-Ary, born in Los Angeles, is a Perth Southern Alberta Art Gallery (2010). Bachmann based artist and researcher. He currently has also made contributions as an editor and works at SymbioticA, an artistic laboratory writer: she is the co-editor of Material Matters dedicated to the research, learning and hands- (YYZ Books, 1998, 1999) and has contributed on engagement with the life sciences, which essays to several anthologies and periodicals is located within the University of Western including The Object of Labor, MIT Press (2007). Australia. Recognised internationally as a major artist and innovator working across science and She is currently Associate Professor in the media arts, Guy specialises in biotechnological Studio Arts Department at Concordia University artwork, which aims to enrich our understanding in Montreal, Canada. She is also a founding of what it means to be alive. member of Hexagram: Institute for Research and Creation in the Media Arts and is the Director of Ben-Ary’s work has been presented in exhibitions the Institute of Everyday Life. and festivals from the Beijing National Art Museum to San Paulo Biennale to the Moscow Biennale. His ingridbachmann.com work can also be seen in the permanent collection of the Museum of Modern Art in New York. In 2009, the work Silent Barrage was awarded an Honorary DOUGLAS BAKKUM Mention in Prix Ars Electronica (Austria) and also won first prize at VIDA, a significant international Douglas Bakkum is a scientist and group leader competition for Art and Artificial Life. in the Department of Biosystems Science Ben-Ary specialises in microscopy, biological and Engineering at ETH Zurich, Switzerland. & digital imaging, tissue engineering. His Main

62 research areas are cybernetics, robotics and and collaborative, immersive performance the interface of biological material to robotics. approaches, his ongoing experience of chronic His artworks utilise motion and growth to illness and treatment. He offers a unique and investigate technological aspects of today’s personal perspective as both artist & patient culture and the re-use of biological materials that intersects with biomedical science, clinical and technologies. treatment and his own human and emotional experience as a renal patient. guybenary.com Douglas’ career began in the late 1970s as a drummer for various underground post-punk ANDREW BURRELL bands, Seems Twice & Kill The King. In the mid- 1990s, he moved into visual arts and commenced studies at COFA UNSW, where he completed an Dr Andrew Burrell is a new media artist, writer and educator working with emerging technologies MFA in 2008. In 2011 he began to incorporate his in the realms of real time 3d, interactive dialysis treatment into his practice and in 2012 installation and networked environments. His work began a residency at The Museum of Human investigates the relationship between imagined Disease & School of Media Arts, UNSW for the and remembered narrative and the constitution development and production of work responding of identity, and demonstrates an ongoing creative to dialysis & chronic renal disease. and thematic interest in the multi-layered biological and technological encoding of human His latest project of his transformative renal subjectivity. His practice revolves around the transplant, titled Circles of Fire, will be collection, writing and representation of narrative presented iteratively over the next two years, ‘fictions’ and the interplay of art, philosophy, and adds a third body of work to the trilogy technology and the life-sciences, and challenges exploring his lived experience as a renal patient. accounts of the self as being both continuous John A Douglas is represented by Chalk Horse. and linear. His networked projects in virtual and augmented environments have received johnadouglas.com international recognition. miscellanea.com MIKE EDEL

Mike Edel has specialised his university studies in JOHN A DOUGLAS the basic and fundamental principles of Anatomy (achieving Honours), Embryology and Human John A Douglas is an interdisciplinary artist Physiology, completing his PhD in Pathology whose practice investigates through scientific in the year 2000 at the University of Western

63 Australia, Perth, Australia. He moved to Barcelona including The Wedding of Everything, Slave in 2004 and works with his wife, Dr. Ana Belen Sonnets, and the infamous Fuck Journal, which Alvarez Palomo, to develop new clinical grade cell was destroyed by its printer in India out of reprogramming technology to make stem cells to fear of reprisals by Indian customs agents. study and treat human disease. Edel is currently Flanagan performed throughout the U.S., often a Group Leader/Ramon y Cajal Investigator (RYC- in collaboration with his partner Sheree Rose. 2010-06512) and accredited Associate Professor Together, Flanagan and Rose combined text, teaching and research based at the University video, and live performance in highly personal but of Barcelona, Faculty of Medicine. He is a senior universal explorations of sex, illness, and mortality. researcher in the field of IPSCs, hESC, gene regulation, epigenetics, cell cycle, differentiation One of their major collaborations was Visiting to neurons or cardiac muscle cells for the use of Hours which premiered in 1993 at the Santa such cells as a cell replacement therapy. He has 38 Monica Museum, California traveling the following publications to date, a book on the state of the art year to the New Museum of Contemporary Art, of iPSC technology (2015), ten years post-doctoral NY and the Museum of the School of Fine Arts experience and five years as group leader. He in Boston (1995). This installation dealt with is Affiliated as Senior Research Fellow at the Flanagan’s lifelong battle with cystic fibrosis in University of Western Australia, and the University relation to his sexuality. In addition to performing of Sydney, Faculty of Medicine, and Visiting in art venues, Flanagan also appeared on stage International Research Fellow at the Victor Chang with Los Angeles Groundlings Comedy Improv Cardiac Research Institute, Sydney, Australia. Ensemble and in numerous films and videos including the Nine Inch Nails music video Happiness is Slavery and in Michael Tolkin’s film, ANDREW FITCH The New Age. He was also the subject of Kirby Dick’s 1997 documentary: SICK: The Life and Andrew Fitch completed a B.Eng (Hons) in Death of Bob Flanagan, Supermasochist. 2010 and his PhD in 2015, at The University of Western Australia. His main research focused on memristor-based chaotic circuits and has BRENTON HEATH-KERR published a book, journal articles and book chapters describing the results of this work. Brenton Heath-Kerr was a performance artist He has been building analogue synthesizers and costume maker whose work was presented since 1998 and currently runs Nonlinearcircuits, in the context of Gay and Lesbian club culture producing a wide variety of unique designs and Sydney Mardi Gras parties of the late intended for use in experimental music. eighties and early nineties. Heath-Kerr was a prominent AIDS activist, until his death at the nonlinearcircuits.blogspot.com age of 33 from an AIDS-related illness. It was Heath-Kerr’s HIV positive status that led him to re-evaluate his life, stop working in ‘straight’ BOB FLANAGAN jobs and explore his creativity. He began to explore how people are ‘read’ through image, Bob Flanagan was a writer and performer. He commenting on how much importance society authored several books of poetry and prose places on this reading yet how superficial and

64 unreliable it can be. image-making, focusing on her mostly urban His work was commissioned by the Sydney Film environment and its diverse inhabitants. Festival, ACON, Victorian AIDS Council and the Jerrems put her camera where counter cultures Sydney Gay and Lesbian Mardi Gras. He was suggested; women’s liberation, street youths and represented in the National Gallery of Australia’s ‘Sharpies’ and Indigenous people in the cities exhibition, Don’t Leave Me This Way: Art in the who were campaigning for justice and land rights. Age of AIDS (1994). Some of his best-known costume works, Miss Gingham, Wood Woman Jerrems was the first contemporary Australian and Tom of Finland are part of the permanent woman photographer to have work acquired collection of the Museum of Applied Arts and by significant museums including the National Sciences, Sydney. Gallery of Australia. The National Gallery in Canberra holds an extensive archive of her photographs and film work. Her work is also STUART HODGETTS held by the Heide Museum of Modern Art, Melbourne where curator Natalie King recently

Stuart Hodgetts is currently Director of the curated and published Up Close: Carol Jerrems Spinal Cord Repair Laboratory in the School of with Larry Clark, Nan Goldin and William Yang Anatomy, Physiology & Human Biology, at the (2014). The documentary film by Kathy Drayton, University of Western Australia (UWA). He has Girl in a Mirror: A Portrait of Carol Jerrems was extensive knowledge and expertise in cell based made in 2005 introducing a new generation to transplantation therapies and has been devoted Jerrems’ work. to this research since 1998. Previously, Hodgetts has worked at the University of Essex, UK where he obtained his PhD, did his first postdoctoral EUGENIE LEE appointment, before working overseas at the Oklahoma Medical Research Foundation, USA. He Eugenie Lee is an emerging interdisciplinary is developing technologies for the use of Induced artist focusing on medical science and her Pluripotent Stem Cells (iPSCs) for use in spinal own chronic pain disease. Her works convey cord injury, and is also using this in a number of the bio-psycho-social experiences of pain- art/science collaborations – in particular as part related illness through visual metaphor. of a collaboration with Guy Ben-Ary. Since 2005, Lee communicates her narratives through Hodgetts has been involved in the generation sculptures, installations, new media, paintings of nearly $3 million in research funds and has and performance. Her works humanise the published in many highly ranked peer reviewed objective perspective of the latest neuroscience journals. A long standing advocate of this cross- research in chronic pain by interlacing with disciplinary research, he is currently Symbiotica’s subjective patients’ narratives. Lee has Scientific Consultant and Adviser. collaborated with some of the world’s leading pain researchers at the University of South Australia, Neuroscience Research Australia, and CAROL JERREMS the University of Sydney through a prestigious research grant, Synapse Residency 2015 (ANAT) Carol Jerrems’ low key, intimate approach to and Accessible Arts. photography comprised a diaristic style of Lee has been an ambassador for Pelvic Pain

65 Foundation Australia since 2015, and has been Griffith University in Brisbane Australia in 2013 a Visiting Fellow at Neuroscience Research which looked at the adaptation of Carnatic Australia since 2014. Indian rhythms to drum set. eugenielee.com

ORLAN DAVID McDIARMID One of the most internationally famous French

A prolific artist and graphic designer, a artists of her generation, ORLAN creates prominent political activist, a pioneer of sculptures, photographs, performances, videos, Australia’s gay liberation movement in the early videogames and augmented realities, using 1970s and artistic director of the Sydney Mardi scientific and medical technics like surgery and Gras in the 1980s, David McDiarmid was one of biogenetics. However, her choice of medium is Australia’s most unique and prolific characters. secondary to the themes ORLAN explores in her work, as the ideas in her practice prevail and the In both his work and his life, McDiarmid’s world materiality pursues. was a heady melting pot of art, colour, fashion, music, sex, gay rights and identity politics. Once ORLAN makes her own body the medium, the being diagnosed with AIDS in 1987, his art and raw material, and the visual support of her energies turned to creating a dialogue around work. Her body is often the site and spark of AIDS and the life of its sufferers, for which he is best known internationally. public debate. She is a major figure in body art and “carnal art”, as she defined it in her

McDiarmid first settled in Melbourne, where 1989 manifesto. Her commitment to liberty is he studied film, illustration, art and history at also an integral part of her work. She defends what is now RMIT. Moving to Sydney in 1972, he innovative, interrogative and subversive helped found Sydney Gay Liberation and at a positions in her art, and seeks to constantly and peaceful protest in front of ABC’s Headquarters radically disrupt conventions and “ready-made that year, became the first person arrested at a thinking”. ORLAN and her practice work against gay rights protest in Australia. natural determinism, male supremacy, religion, cultural segregation, racism and all forms of social and political domination. DARREN MOORE Always mixed with humour, often using Darren Moore is an Australian drummer, parody or even the grotesque, her provocative electronic music based in Tokyo, Japan. He artworks can shock as she defies convention. performs regularly on drum set and modular ORLAN recently won the E-reputation award, synthesizer in predominantly in the fields designating the most observed and followed of jazz, experimental and improvised music artist on the Internet. styles. Darren has performed extensively in Australia, South-East Asia, Japan and Europe. He completed his Doctorate of Musical Arts at orlan.eu

66 HELEN PYNOR Max Planck Institute of Molecular Cell Biology and Genetics (MPI-CBG) in Dresden, Germany,

Helen Pynor’s practice spans large-scale followed by postdoctoral research in the lab of installations through to small intimate works using Alejandro Sanchez Alvarado at the University photography, sculpture, video, media art, wet of Utah, Salt Lake City, USA. Since 2011 he has biology and performance. Her work is informed headed an independent Max Planck Research by in-depth residencies in scientific and clinical Group at the MPI-CBG in Dresden. The group institutions such as the Max Planck Institute of is studying the ability of planarian flatworms Molecular Cell Biology and Genetics, Dresden, the to regenerate their entire body from tiny Heart and Lung Transplant Unit at St Vincent’s tissue pieces. The self-organising signalling Hospital, Sydney, and SymbioticA, Perth. networks specifying the planarian body plan and their interplay with the pluripotent stem

Pynor has exhibited widely nationally and cells of the worms are a primary research focus internationally, including at the National Taiwan of the lab. The group is also investigating Museum of Fine Arts; National Centre for why some animals regenerate while many Contemporary Art, Russia; Science Gallery Dublin; cannot. Taking advantage of the dramatic Ars Electronica, Linz; ISEA2013, Sydney; Wellcome variation in regenerative abilities amongst Collection, London; Museum of Science and Industry, different planarian species, the group has built Manchester; Centraal Museum, Utrecht; Powerhouse a large planarian species collection to study Museum, Sydney; Galerija Kapelica, Ljubljana; the molecular and evolutionary mechanisms The Australian Centre for Photography, Sydney; underlying the gain or loss of regenerative Performance Space, Sydney; Royal Academy of Arts, abilities. Recent achievements include the London; and Leonardo Electronic Almanac, online. rescue of a species-specific regeneration defect published in Nature, and a European Research In 2012 Pynor’s collaborative work The Body is a Council Consolidator and European Molecular Big Place was awarded an Honorary Mention at Prix Biology Organisation EMBO Young Investigator Ars Electronica, Linz and she has been the recipient grants awarded to Jochen Rink. of national awards in Australia including the Josephine Ulrick and Win Schubert Photography Award and the RBS Emerging Artist Award. Pynor SHEREE ROSE has completed a Bachelor of Science (1st Class

Hons), a Bachelor of Visual Arts and a practice- Sheree Rose is a documentary photographer based PhD. She is represented by Dominik Mersch and performance artist who became well known Gallery, Sydney and GV Art gallery, London. in 1990s as the collaborator and partner of performance artist, Bob Flanagan. Flanagan helenpynor.com and Rose exhibited their extreme show, Visiting Hours at the Santa Monica Museum of Art, and the New Museum of Contemporary Art in New JOCHEN RINK York in 1993 and 1994. After Flanagan’s death in 1996, the documentary, Sick: The Life and Jochen Rink holds a degree in natural sciences Death of Bob Flanagan: Supermasochist in which from the University of Cambridge, UK. He Rose was integrally involved, won a prize at the completed his PhD with Marino Zerial at The Sundance Film Festival. Rose has continued to

67 show her photography at international galleries, Spence maintained a career as an educator, including the Tate Modern in Liverpool, Country writer, organizer and broadcaster. She was firmly Club and Coagula Galleries in Los Angeles. embedded in the photographic discourse of the era, regularly appearing in journals such as Rose has recently collaborated with English performance Ten.8, Cameraworks and the feminist magazine artist, Martin O’Brien, both in London and Los Angeles, Spare Rib. In 1986, Spence published Putting including the works Do with Me as You Will, Dust to Myself in the Picture (Camden Press) bringing Dust, and If it were the Apocalypse (I’d eat you to stay together her raw and confessional works to alive). In 2016 they will present an installation, The inspire a younger generation of photographers. Viewing (a posthumous realisation of a concept by She participated in many key photographic Flanagan), at the DaDaFest in Liverpool, UK. In 2015, she surveys, including the seminal Three collaborated with Rocio Bolivar in Between Menopause Perspectives on Photography at the Hayward and Old Age, Alternative Beauty, presented by the Live Gallery in 1979. Art Development Agency at the Chelsea Theatre in London. She has recently returned from India, where she Much of Spence’s later work was a response to collaborated with Bolivar at the Morni Hills Performance her treatment by the medical establishment and Art Biennale and Performance Exhibition Space in her attempt to navigate its authority through Brooklyn, New York. Rose’s art and photography archive alternative therapies. Work such as ‘Cancer is held by ONE National Gay & Lesbian Archives at the Shock’ (1982) and ‘The Picture of Health?’ (1982- University of Southern California Libraries. 86) present Spence’s concerns through photo narrative, montage and performative re-staging of personal trauma. JO SPENCE jospence.org

Jo Spence was an integral figure in contemporary photography from the 1970s onwards who used her work to redefine the NATHAN THOMPSON traditional roles of women. She became well known for her highly politicised approach to Nathan Thompson is a multi-disciplinary the medium. Her political awareness led her artist exploring the possibilities of man/ towards a collaboration with Terry Dennett, machine interaction and the hidden corners a photographer with whom she founded that arise from this relationship. Mostly he the Photography Workshop Ltd, a roving implements machine/robots that play along the platform that acted as an open resource, with blurred edge of the interactive while showing a common belief in the emancipatory potential independent thought, only slightly tethered to of photography. Spence continued to work the audiences action. His work often questions collaboratively throughout her career going on the role of humans in the natural landscape and to co-establish the Hackney Flashers (1974 - through these investigations, builds a greater early 80s) and Polysnappers (1980-82). understanding of our inhabited space. His machines are self-built, analogue and lifelike in Alongside a prolific photographic practice, their behaviour, using custom electronic Neural-

68 type networks that are on their own, very simple TIM WAINWRIGHT but when piggybacked, multiplied and fed back into the stream, display behaviour remarkably Tim Wainwright has shown his work organic. The interpretations of this evolving internationally in museums, galleries, and public machine language lead to an installation unique and private spaces. It has included large-scale to every setting. Often the participant both visual and sonic installations, photographic controls and is controlled by the mechanics of documentary projects, abstracts, and story these unique lifelike constructions. telling. He has used photography, film and sound to investigate the nature of transformation whilst exploring witness and voyeurism. JOHN WYNNE “Far from being made into mirrors for his own fears, his subjects are allowed to ‘speak’ for themselves. His interest isn’t in showing the John Wynne is a London-based artist whose differences in their self-image but simply in practice includes large-scale multi-channel observing that each of them has a self-image.” sound installations for galleries and public (Charles Darwent) spaces, delicate sound sculptures, flying radios Transplant represents the third element in a and award-winning ‘composed documentaries’ body of work that examines what he sees as for radio which hover on the boundary between the four fundamental elements of what it is to documentary and abstraction. His massive be human - mind, body, heart and soul. With installation for 300 speakers, player piano and regard to this he has documented the lives of vacuum cleaner became the first work of sound the severely mentally ill, of people with cancer, art in the Saatchi collection in London and and is currently exploring what soul means to won him the 2010 British Composer Award for a variety of different people living in London. Sonic Art. His work with endangered languages For Transplant, he initiated a collaboration with includes a project with click language speakers another artist, John Wynne, which represents in the Kalahari Desert and another with something of a departure from his usual members of the indigenous Gitxsan community practice. in British Columbia. He lives and works in London.

After a year-long residency with photographer www.aboutsoul.org Tim Wainwright at one of the world’s leading centres for heart and lung transplantation, the Transplant project led to a book, an installation and a half-hour commission for BBC Radio. John is a Reader in Sound Arts at the University of the Arts London , a core member of the CRiSAP research centre, and has a PhD from Goldsmiths College, University of London. sensitivebrigade.com

69 WRITER BIOGRAPHIES

DAVID CROSS KIRSTEN HUDSON

David Cross is a Melbourne based artist, Kirsten Hudson is a trans-disciplinary artist, curator and writer, his practice extends across writer and academic based in Western performance, installation, sculpture, public Australia, where she is employed as a lecturer art and video. Known for his examination of in the School of Media Culture and Creative risk, pleasure and participation, Cross often Arts, and the School of Design and Art at utilises inflatable structures to negotiate Curtin University. Her research focuses on the inter-personal exchange. He has performed in philosophies, histories, and materialities of the international live art festivals in Poland and body, informed by gender studies, queer theory Croatia and was selected as a New Zealand and post-humanism. Creating performance, film and objects, her practice critically resists representative at the 2011 Prague Quadrennial. and subverts normalising representations, Cross was commissioned by National Institute constructions and perceptions of subjectivity, of Experimental Art/City of Sydney to develop sociality and embodiment. Her current research Drift, a large-scale public art commission for projects materially and textually explore: 1. the Taylors Square in Sydney (2011). His work Hold political, ethical and aesthetic consequences was selected for inclusion in Liveworks at of bio-technologies on understandings of life, Performance Space, Sydney in 2010 and at Arts death and person-hood; 2. how new media/ House for the Melbourne International Festival machine interfaces discipline gesture, affect in October 2012. More recently he has examined and sensation; 3. the potential of the art object the connection between sport, performance to activate sensation, affect, and/or emotion and community in public art projects for that lie outside western frames of reference and Scape 7 in Christchurch (2013) and Temporary perception. Democracies: A Project for Campbelltown Arts Centre (2014). As a curator he developed with Claire Doherty the One Day Sculpture project across New Zealand in 2008/9, Iteration:Again: 13 Public Art Projects Across Tasmania (2011) and Treatment: 6 Public Artworks at Western Treatment Plant (2015). He is Professor of Visual Arts at Deakin University. davidcrossartist.com

70 EXHIBITION & DESIGN BIOGRAPHIES

BRIAN LOBEL SHAHMEN SUKU

Brian Lobel is a performer, teacher and curator Shahmen Suku is an exhibition designer and who creates work about bodies and how they performance artist based in Sydney. He studied are watched, policed, prodded and loved by interior design at the Queensland University others. Lobel shows work internationally in of Technology and biomedical science at a range of contexts, from medical schools to the University of Queensland. Recent design museums, marketplaces to forests, blending projects include Art as a Verb and VOLUME provocative humour with insightful reflection. He 2015 | Another Art Book Fair (both Artspace, is a Senior Lecturer at University Sydney, 2015) and Isabel and Alfredo Aquilizan: of Chichester, Wellcome Settlement (QUT Art Museum, Brisbane, 2013). Trust Public Engagement Fellow, and Co- Director of The Sick of the Fringe. FIONA HUDSON Brian has been creating work about cancer, illness and disability for a decade, touring to Fiona Hudson is a graphic designer based in tens of thousands of medical students, doctors, Sydney. She studied Creative Arts (Graphic and patient groups. His projects discuss his own Design) and Communications (Marketing & history of cancer (BALL & Other Funny Stories Advertising) at the University of Wollongong About Cancer) and the psychosocial experiences (2013). Her work focuses primarily on of others with illness (Fun with Cancer Patients) publication, digital design, branding, typography and include interactive events (Sex, Cancer & and client relationships. Some of Fiona’s clients Cocktails, CANCER DEATH MATCH) and the have included the University of Wollongong, book of the musical (with Bryony Kimmings) A Menulog and Navarra Venues. Pacifist’s Guide to the War on Cancer.

fionahudson.com.au blobelwarming.com

71 CURATOR BIOGRAPHY

Bec Dean is a curator, writer and educator who with Lizzie Muller (2011) and Trace Elements: trained as a visual artist. She has worked for arts Spirit and Memory in Japanese and Australian organisations and contemporary art spaces in Photomedia with Shihoko Iida at Tokyo Opera Australia since 1996. City Art Gallery (2008) and Performance Space (2009). Dean joined Performance Space as Associate Director in 2007 and became Co-Director Dean’s writing on art, new media practice and with Jeff Khan in January 2012 until February performance has been published extensively 2014. She continues to a presence outside since the late 1990s in broadsheets and art the organisation as Curator at Large. Dean is journals and commissioned by galleries and currently curating independent projects and institutions for catalogues. Recent contributions working as a casual academic, while undertaking in publications include the books Deborah Kelly a PhD at the University of New South Wales. & published by Artspace and Unsitely Aesthetics edited by Maria Miranda. She co-edited the Sad Dean was previously curator at the Australian & Lonely issue of Photofile with Robert Cook Centre for Photography (2005-2007) and (2004) and the Artlink issue, Sexing the Agenda Exhibition Manager at Perth Institute of (2013) with Johanna Mendelssohn. Contemporary Arts (2002-2005). Her curatorial interests revolve around interdisciplinary and participatory practices, performance, site- specificity, biomedical art, and science and humanities intersections and discourses. She was co-curator of the interdisciplinary art laboratory Time_Place_Space: Nomad produced by Performance Space and ArtsHouse, Melbourne (2014-2015). Notable projects include the SEXES festival, co-curated with Deborah Kelly and Jeff Khan, Local Positioning Systems at Museum of Contemporary Art, Australia with Jeff Khan (2012), Awfully Wonderful: Science Fiction in Contemporary Art at Performance Space

72 ACKNOWLEDGEMENTS

Bec Dean would like to thank presenting Special thanks to Lizzie Muller, Rachel Arndt, partner UNSW Galleries and its staff for David Evans-Frantz, Linda Sly, Natalie King, staging the premiere exhibition of this project. Katarina Paseta, Richard Manner, Tilly Boleyn, This project is supported by ArtsNSW; the Matthew Connell, Derek Williamson, Claire Australian Government through its arts funding Monneraye, Vanessa Bartlett and Dianna and and advisory body, the Australia Council for Tugi Balog of Graphic Art Mount. the Arts; the Department of Culture and the Arts, Western Australia and the Russell Mills The Patient: The Medical Subject in Foundation. Contemporary Art UNSW Galleries, UNSW Art & Design Many thanks to event partners, UNSW Art & 3 June - 6 August, 2016 Design, National Art School and Performance Space. The Patient Forum UNSW Art & Design This project has also been supported by 133 24 June, 2016 individual funders through a Pozible campaign assisted by the generosity of artists Deborah Curator and Editor: Bec Dean Kelly, Raquel Ormella, Lily Hibberd, Nadège Exhibition Designer: Shahmen Suku Desgenétez, Eugenie Lee and Lucas Ihlein & Ian Catalogue and Type Designer: Fiona Hudson Milliss. Curatorial & Editorial Assistant: Emma Size Essayists: Dr. David Cross, Dr. Kirsten Hudson, Thanks to individual catalogue supporters: Dr. Brian Lobell and Bec Dean Patti Belletty, Marcus Canning, Alexandra Production: Dara Gill Crosby, Courtney Gibson, Su Goldfish, Lily Exhibition Coordinator: Lucy Ainsworth Hibberd, Lucas Ihlein, Shihoko Iida, Clare Lewis, Gallery Manager: Susan Thompson Chris Malcolm, Sarah McEwan, Daniel Mudie- UNSW Galleries Director: Felicity Fenner Cunningham, Richard Newton, Raquel Ormella, Tulleah Pearce, Elizabeth Stanton, Sarah Miller, Installation images on pages 28 and 60 by Samuel White, Fiona Winning, Greg Pritchard, Silversalt Photography Steph Walker, Hayley West, Alex Wisser and Pip Wittenoom.

73 PRESENTED BY

SUPPORTED BY

74 76

Appendix B

The Patient brochure, UNSW Galleries

The Medical Subject in Contemporary Art

Artists Curator Ingrid Bachmann Bec Dean Guy Ben-Ary John A Douglas 3 June – 6 August Bob Flanagan & Sheree Rose 2016 Brenton Heath-Kerr Carol Jerrems Eugenie Lee David McDiarmid ORLAN Helen Pynor Jo Spence John Wynne & Tim Wainwright The Patient: Encountering the Medical Subject

The word patient has a dual meaning. It describes his collaborators Nathan Thompson, a state of being – of bearing a situation quietly, Andrew Fitch, Darren Moore, Douglas Bakkum, without complaint. It also describes a person Stuart Hodgetts and Mike Edel have created an in a hospital or clinical context, who is ill and autonomous, cybernetic synthesiser controlled undergoing diagnosis or treatment. The word by a living neural cluster made from Ben-Ary’s originates from the Latin, patiens, which means own stemcells in cellF. “suffering, enduring”.¹ And for the medical patient, it For The Patient, I have researched a wide range is a common enough experience to wait, with pain. of contemporary art to engage with the various This exhibition, The Patient, addresses the lineages and progenitors of biomedical art: embodied experience of the artist as medical the feminist artists that challenged the social patient, and the medical patient as living subject obligation to hide the diseased or surgical body in contemporary art. It explores the ways in which from public view; the HIV and AIDS activist artists engage with powerful human experiences artists whose works brought home to mainstream in the fields of health, biological science and Australia the power and subversive potential of medicine, contributing to discourse on the art in addressing discrimination, visibility and representation of illness, disease, care, individual the social impacts of the epidemic; socially- agency and what it is to be human. engaged photographers who addressed directly and defiantly the loss of agency that patients From over two decades of artistic enquiry through experience within the hospital system; and “Bio Art”² convergences of the humanities and body-based performance and conceptual sciences, artists now have extraordinary access artists and their collaborators whose use of their to the spaces of biological science and medicine own bodies as object, subject and art material – from laboratories, surgeries, therapeutic and brought the medical body viscerally into the community contexts, to specialist museums. space of the gallery.³ Their access is not restricted to spaces, but includes relationships with scientific and ORLAN has given access to both her early and medical professionals and their fields of recent video works for this project including research and knowledge. performative surgeries and animations of augmented bodies. The exhibition also includes There are four new works in The Patient. recent artworks made by artists John Wynne & Helen Pynor’s The end is a distant memory Tim Wainwright, and Ingrid Bachmann, who have considers the state between living and dying and worked through different processes in close the scientific, medical and digestive consumption consultation with transplant patient communities of other animals. Video and performance artist and hospitals. As this is an exhibition engaging John A Douglas exhibits a trilogy of works with the experience of illness including those of traversing his lived experience as a renal patient. terminal patients, many of the artists represented This includes the premiere of a new work as have passed away. Permission to show these a transplant recipient called Circles of Fire. works has been gained from the estates of Installation artist and painter Eugenie Lee has Jo Spence, David McDiarmid and Carol Jerrems, created a participatory, virtual reality installation the friends of Brenton Heath-Kerr and the partner called Seeing is Believing that enables visitors and collaborator of Bob Flanagan, Sheree Rose. to comprehend the experience of chronic pain. Looking to the future of patienthood and the The history of medicine as a subject matter potential of the human body, Guy Ben-Ary and of art is perhaps as old as art itself, leaving Bec Dean, Curator

behind its evidence in Stone Age amulets, Bec Dean is a curator and writer with a idols, mosaics, hieroglyphics and illuminated background as a visual artist working in video, manuscripts, through to the Western canon and photography and performance. Her curatorial the celebrated anatomical drawings of Da Vinci, interests are focused on the reciprocity the consumptive muses of the Pre-Raphaelites, between distinct disciplines across science the etchings of Hogarth, the suffering figures and the humanities and the representation of Munch, and the self-portraits of Kahlo. of new media and experimental practice The material record of human history tells us within the wider discourses and contexts that people across all times, places, cultures of contemporary art. and religions have grappled with expressing She has been working for contemporary the transient and fragile nature of our fleshly, arts spaces and organisations since 1996. embodied human experience.4 She joined Performance Space as Associate The collection of works, new experiments and Director in 2007 and became Co-Director ongoing projects that comprise The Patient are with Jeff Khan in January 2012 until February all variously difficult, fearless, funny, painfully 2014. She continues a relationship with beautiful and unlovely. They range across media the organisation as Curator at Large. and connect to us as viewers and occasionally She is currently exploring possibilities for an as participants through both familiar and leading independent practice as well as undertaking edge technologies. The artists in this exhibition a PhD at UNSW Art & Design. deepen our own enquiries into the actual stuff Dean was previously curator at the Australian of illness and disease, death and life – how they Centre for Photography (2005-2007) and manifest viscerally and psychologically as well as Exhibition Manager at Perth Institute of socially and politically. The driving concern Contemporary Arts (2002-2005). She was for me in presenting The Patient is to create a co-curator of the recent iterations of the space for poetic, reflective and social forms of interdisciplinary art laboratory Time_Place_ engagement with issues that we are all at some Space: Nomad produced by Performance point touched by. Space and ArtsHouse, Melbourne We will all be patient. (2014-2015). Her curatorial projects have been presented around Australia and in Bec Dean, Curator international contexts.

1 maquariedictionary.com 2 The field of “Bio Art” is defined by one of its most prolific writers and artists, Eduardo Kac, as “a new direction in contemporary art that manipulates the processes of life.” Kac, E. Signs of Life: Bio Art and Beyond (Cambridge and London: MIT Press, 2007), 18. 3 Art historian Amelia Jones has written extensively on the work of body-based performance artists. In Body Art she writes of ORLAN, Flanagan and Rose that they, “turn the body inside out, enacting the stubborn corporeality of the self while refusing any conception of this corporeality as fixed in its materiality.” Jones, A. Body Art: Performing the Subject (University of Minnesota Press, 1998), 226. 4 The Wellcome Collection in London, UK, holds the most diverse collection of medical objects, artefacts, books and materials relating to the medical humanities and the social history of medicine. Its publication The Art of Medicine tells the story of medicine through art and artefacts. Anderson, J., Barnes, E., Shackleton, E. The Art of Medicine (Chicago: University of Chicago Press, 2011). Public Program

Exhibition Preview Catalogue, Book Launch and an Ending AUSLAN and live audio description is provided Join us for the launch of The Patient catalogue on this pre-opening tour with the curator and and the launch of Dr Lindsay Kelly’s new exhibition artists. book Bioart Kitchen: Art, Feminism and Technoscience (I. B. Tauris, 2016) with drinks, 5pm – 6pm, Thursday 2 June ‘food’ and an Ending performed by Sheree UNSW Galleries Rose, Fiona McGregor and Victoria Spence. FREE 5pm – 7pm, Thursday 4 August cellF UNSW Galleries The Sydney premiere of cellF by Guy Ben-Ary, FREE Nathan Thompson, Andrew Fitch, Darren Moore, Douglas Bakkum, Stuart Hodgetts and Mike Edel. Participatory Program Developed by cellF live performances with musicians, the Master of Curating and Cultural Chris Abrahams (Friday), Ensemble Offspring Leadership Program 2016 (Saturday), Jon Rose, Darren Moore and Clayton Thomas (Sunday). For more information on all of these programs, please go to: 8pm, Friday 10 – Sunday 12 June artdesign.unsw.edu.au/unsw-galleries Cellblock Theatre, National Art School Corner Forbes Street & Burton Street, Darlinghurst The Screening Room Emma Fowler, Amanda Saker & Issac Yeo FREE In conjunction with The Patient exhibition at The Patient Forum UNSW Galleries, this curated film series explores Join artists, doctors, historians, scientists and the relationships between science, medicine and specialists for this cross-disciplinary forum the patient. From German Expressionist cinema engaging with key issues running through the to the psychodramas of Ingmar Bergman, these exhibition The Patient at UNSW Galleries. screenings extend the conversation around health and humanity beyond the gallery. 10am – 4pm, Friday 24 June EG02 Theatre, UNSW Art & Design The Black Box, UNSW Art & Design Corner of Greens Road and Oxford Street FREE AUSLAN interpretation provided FREE, tea and coffee provided Piecing it Together Joan Cameron-Smith, Cara Lopez & Chloe Gunn In Conversation with Sheree Rose This collaborative collage workshop will Performance artist and widow of Bob Flanagan, extend and borrow from imagery in The Patient Sheree Rose, discusses her extraordinary body surrounding themes of health, illness and medical of work, her collaborative performances, and sciences. The workshop will be convened by life after Bob with fellow performance artist and contemporary Australian artist Deborah Kelly, celebrated author, Fiona McGregor. and will coincide with Kelly’s own Postgraduate 5pm – 6pm, Tuesday 2 August Masters Exhibition at UNSW Galleries. UNSW Galleries UNSW Galleries AUSLAN interpretation provided FREE FREE, tea and coffee provided Are YOU Sick? Leana Julian & Sarah Gallagher The Are YOU Sick? app will provide a digital, interactive feedback form for exhibition audiences to express their own personal experiences with illness. These anonymous responses will be added to a database that will follow the exhibition throughout its tour of regional NSW and Victoria. Acknowledegments UNSW Galleries FREE

Personal/Social Objects Maria Makismova & Renee Quiambao Bec Dean would like to thank presenting partner As part of the Personal/Social Objects UNSW Galleries and its staff for supporting project visitors are invited to bring a small and presenting this project. The Patient is also empty medication container to be displayed supported by Museums & Galleries of NSW, in a pill box cabinet. the Australia Council for the Arts and the Russell Mills Foundation. Many thanks to UNSW Galleries the event partners, National Art School and FREE Performance Space. This project has also been supported by 133 individual funders through Pozible and the generosity of artists Deborah Kelly, Raquel Ormella, Lily Hibberd, Nadège Desgenétez, Eugenie Lee and Lucas Ihlein & Ian Milliss.

Special thanks to Lizzie Muller, Richard Manner, Tilly Boleyn, Matthew Connell, Derek Williamson, Claire Monneraye and Vanessa Bartlett.

A UNSW Galleries exhibition Curator Bec Dean Exhibition Designer Shahmen Suku Designer Fiona Hudson Curatorial and Editorial Assistant Emma Size

John A Douglas, Circles of Fire: Version 1, 2016. Carol Jerrems, photograph from the Royal Hobart Hospital Synchronised dual channel 4k to HD. Series, 1979. Printed by Roger Scott, 2004. video and sound. Gelatin silver photograph. Courtesy of the artist and Chalkhorse Courtesy of Ken Jerrems and the Estate of Lance Jerrems Sydney. with thanks to the Heide Museum of Modern Art, Melbourne. Artists

Ingrid Bachmann Guy Ben-Ary, John A Douglas

b. 1958, London, Canada. Nathan Thompson, b. 1960, Sydney, Australia. Lives and works in Montreal. Andrew Fitch, Lives and works in Sydney. Darren Moore, Douglas Bakkum, Ingrid Bachmann is an Stuart Hodgetts In this trilogy of works, interdisciplinary artist and made between 2010 to researcher who explores and Mike Edel date, John A Douglas engages the complicated relationship G. B–A b. 1967, Los Angeles, USA. with his lived experience as between the material and virtual Lives and works in Perth, Australia. a renal patient. In the large- realms. Her works exists at the scale photographs of crossroads of the technological, Body Fluid, the sheathed the generative, the performative cellF is the world’s first neural figure of a humanoid interacts and the corporeal. In the piece synthesiser. It is made from impossibly with different A-Part of Me, the body is used the artist Guy Ben-Ary’s neural environmental extremes. both as the means and the site stem cells that have been In The Visceral Garden, for listening to the narratives bioengineered from a biopsy Douglas’ encounters with of heart transplant recipients. taken from his arm and nurtured specimens of pathology The listener hears these stories in a laboratory over several are rendered as luminous intimately in their body and years. The neural networks imaginary landscapes. The through their body. Bone control an array of analogue artist connects the internal transducer sensors are used synthesisers and can play and external states of being, to conduct the sound through with human musicians. as a chronically ill patient, as the bones using the skull as The artist’s extended biology entering an underworld from the resonating chamber. is the material, subject and where there is no return. The Only the person holding the co-author of this work. Its living latest work Circles of Fire transducer to his/her bones ‘brain’ has a lively materiality navigates through the complex can hear the sound. that compels us to consider and challenging terrain of the selective possibilities of organ transplantation, as a the future human body. metaphysical journey. A-Part of Me, 2014. Bone transducer sensors, electronics, sound recordings. cellF, 2015. Circles of Fire: Version 1, 2016. Courtesy of the artist. Documentation of the making of cellF. Synchronised dual channel 4k to HD Courtesy of the artists. video and sound. Courtesy of the artist and Chalkhorse Sydney. Bob Flanagan Brenton Heath-Kerr Carol Jerrems b. 1952, Los Angeles, USA. b. 1962, Sydney, Australia. b. 1949, Melbourne, Australia. d. 1996, Los Angeles, USA. d. 1995, Sydney. d. 1980, Melbourne. Sheree Rose b. 1941, Los Angeles, USA. Brenton Heath-Kerr was a Carol Jerrems’ black and white, Lives and works in Los Angeles. performance artist and AIDS autobiographical portraits and activist, until his death at the photographs of young people From 1981 until his death in age of 33 from an AIDS-related and subcultures of the 1970s 1996, Sheree Rose collaborated illness. Heath-Kerr made in Australia resonated with with her partner, Bob Flanagan, costumes and performances the rapid social change and in a series of photographs, for the gay and lesbian club spirit of resistance of the times. videos and performances scene in Sydney and was later In the Royal Hobart Hospital that documented their sado- presented in contemporary Series, Jerrems continued to masochistic relationship as art contexts including the take photographs of herself, well as the impact of his cystic National Gallery of Australia. her changing body, her clinical fibrosis on both their artistic Heath-Kerr’s work explored surroundings, other patients and personal lives. identity and experience – and the doctors and nurses Visiting Hours is arguably including his experience as a treating her during a lengthy, the pair’s most famous work. patient – through costume and twelve-week stay for treatment This major collaboration characters that obfuscated his of Bud-Chiari Syndrome in premiered in 1993 at the own features. Many of his iconic Hobart Hospital. Jerrems Santa Monica Museum, costumes have been collected died the following year from California, before touring by the Museum of Applied Arts her illness. in the United States. and Sciences, Sydney. Photograph from the Royal Hobart , 1979. Homosapien, 1994. Hospital Series Wall of Pain, 1993/2016. Printed by Roger Scott, 2004. Type C photograph. Documentary photographs. Gelatin silver photographs. from Visiting Hours, 1993-1995. Photograph by John Webber. Exhibited with excerpts from Photograph by Sheree Rose. Carol Jerrems’ hospital diary, The Patient. Courtesy of Sheree Rose and Courtesy of Ken Jerrems and the Estate the One Archives, Los Angeles. of Lance Jerrems with thanks to the Heide Museum of Modern Art, Melbourne. Eugenie Lee David McDiarmid ORLAN b. 1974, South Korea. b. 1952, Hobart, Australia. b. 1947, Saint-Étienne, France. Lives and works in Sydney. d. 1995, Sydney. Lives and works in Los Angeles, New York and Paris.

Seeing is Believing conveys David McDiarmid was a ORLAN is a French conceptual the bio-psycho-social celebrated Australian artist, and performance artist. Since aspects of a type of chronic painter, activist, designer 1963 she has created series pain – Complex Regional across print media and textiles of photographs, installations, Pain Syndrome (CRPS). and artistic director of the sculptures, texts, objects, The interactive installation, Sydney Gay and Lesbian Mardi films and performances. She supported by a Synapse Gras. His vibrant work engaged is well known as the first artist Residency, is based on with homosexual male identity to use plastic surgery, and the latest research in politics, gay liberation and to collaborate with medical neuroscience showing that activism and later with the surgeons in the making of pain is integrated with each HIV/AIDS crisis. In Rainbow her work. This exhibition person’s environment, Aphorism Series, McDiarmid’s includes video of her 7th and that their subjective biting, witty and incendiary ‘surgery-performance’ which associations contribute statements, which counteract explores the material and to their perception of pain. the conciliatory language cultural transformation of the employed around sickness, body as image and flesh, and are rendered in large, recent works that engage with Seeing is Believing, 2016. Multimedia, participatory installation, rainbow typeface over a augmentation of the body ‘Mirage Machine’, Oculus Rift and rainbow background. through the possibilities of anechoic chamber. the digital. ORLAN makes her Neuroscience collaborators: own body the medium, the raw Dr Tarsha Stanton, Dr Valeria Bellan, David McDiarmid Professor Lorimer Moseley, Rainbow Aphorism Series, 1994. material, and the visual support Professor Philip Porronik, Exhibition prints 2015 on loan of her work. Professor William Martens, from the David McDiarmid Estate. Stuart Elisdale and Inkjet print on Platine fibre cotton rag. Professor Roger Newport. VR media design and production: Courtesy of the David McDiarmid Estate. 4th Surgery-Performance Titled Andrew Burrell, Tom Hazell Successful Operation, 8th December, 1991. and Rosie Menzies. Courtesy of the artist. Acoustic design: Meisha Stevens. Design: Matthew Bolton and Cassandra Prasad and Rob Yuan. Courtesy of the artist. Helen Pynor Jo Spence John Wynne b. 1964, Sydney, Australia. b. 1934, London, UK. b. 1957, RCAF Zweibrücken, Lives and works in London d. 1992, Hampstead. Germany. Lives and works and Sydney. in London.

Helen Pynor’s work reflects Jo Spence was an integral Tim Wainwright her ongoing fascination with figure within photographic b. 1954, Brisbane, Australia. the porosity between mind discourse in the UK and Lives and works in London. and body, culture and biology, internationally from the body and memory. Drawing 1970s onwards. Through her John Wynne and Tim Wainwright on her own dual backgrounds diverse projects she was well were artists-in-residence for a in the biological sciences known for her political and year at Harefield Hospital near and the visual arts, Pynor’s socially engaged approach London, one of the world’s work explores the interiority to photography, and later leading centres for heart and of the human body. The end the representation of her lung transplants. They recorded is a distant memory is an own struggles with breast and photographed patients, the interdisciplinary work exploring cancer. In the staged portraits devices attached to or implanted two related philosophically and of Narratives of Dis-ease in them, and the hospital medically ambiguous zones – Spence explores the gendered environment itself. the end of life into death, and experience, subjectivity and the inter-subjective nature of agency of the female patient. “Through all the differences and eating. Her work brings into In this case, taking control of similarities of sound and vision, focus the use of animals as her own representation. seeing and hearing, looking proxies for human test and listening, a rapprochement subjects in biological science emerges in the collaboration. The Narratives of Dis-ease, 1990. insistent stillness of a photograph and medical contexts and Colour photograph, 63.5 x 41cm. the transfer of bodily tissue and Collaboration with Dr Tim Sheard hovers in and out of the temporal Copyright the Estate of Jo Spence. energy between organisms. movement of spoken language, Courtesy of Richard Saltoun Gallery, but both add a powerful sense of London. human presence and individuality The end is a distant memory, 2016. to each other.” (David Toop) Video, sound, photography and object installation. Sound by James Brown. Collaborating scientist Dr Jochen Rink, Max Planck Institute of Molecular Cell Transplant, 2008. Biology and Genetics, Dresden. Video with sound. Courtesy of the artist. Courtesy of the artists. Presented by

Project Support

Find Us Contact Us UNSW Art & Design Telephone +61 (0) 2 8936 0888 Oxford Street Email [email protected] (corner of Greens Road) www.artdesign.unsw.edu.au/unsw-galleries Paddington NSW 2021 Australia Connect to Us Visit Us facebookfacebook.com/artdesignunsw Opening Hours instagram@unswgalleries Tuesday to Saturday 10am to 5pm twitterartdesignunsw Closed public holidays tumblrartdesignunsw.tumblr.com

Appendix C

The Patient Forum information

The Patient Forum Friday 24 June 2016 FREE

Join artists, doctors, nurses, academics, specialists and health and medicine advocates for this cross-disciplinary forum engaging with key themes and medical experiences running through the exhibition The Patient, now showing at UNSW Galleries.

The forum will begin with a keynote address by Bec Dean, curator of the exhibition and PhD candidate at UNSW Art & Design. Her presentation will describe her artist and exhibition research, and reflection on curatorial and institutional practice in relation to biomedical art.

Three illuminating panel discussions will bring together artists presenting new work in the exhibition, with experts from the fields of health and medicine with which their work intersects. These discussions will incorporate multiple perspectives on pain, organ transplantation and the end of life.

Schedule 9.45am Registration and tea and coffee served

10.00am Welcome and acknowledgement of country

10.15am Curatorial address Bec Dean: Curator and PhD Candidate UNSW The Patient: Curating and Care in Biomedical Art

11.00am Panel Discussion: Pain Eugenie Lee: Artist and Chronic Pain Patient, presenting work in The Patient Dr Susan Evans: Gynaecologist, Laparoscopic Surgeon and Specialist Pain Medicine Physician Emeritus Professor Roland Sussex OAM: Research Professor, Institute for Teaching and Learning Innovation and the School of Languages and Cultures, The University of Queensland Moderated by Professor Jill Bennett: Founding Director, National Institute of Experimental Arts, UNSW

12.00pm Lunch 1.00pm Panel Discussion: Transplant John A Douglas: Artist and Kidney Transplant Recipient, presenting work in The Patient Associate Professor Dr Kumud Dhital: Heart and Lung Transplant Specialist and Cardiothoracic Surgeon, St Vincent’s Hospital and UNSW Max Mohr: Public Advocate and Spokesperson for Transplant Australia, and Liver Transplant Recipient Moderated by Dr Astrid Lorange: Writer, researcher and lecturer, UNSW Art & Design

2.00pm Panel Discussion: End of Life Helen Pynor: Artist, presenting work in The Patient Joshua Cohen: Clinic Nurse Consultant at Concord Palliative Care unit Moderated by Victoria Spence: Moderated by Victoria Spence: Artist, Dramaturg, Life Rites Counsellor, Life Passage Celebrant and Holistic Funeral Director 3.00pm Summation and close

(photo credit: Brenton Heath-Kerr, Homosapien 1994. Photo by John Webber)

FAQs What are my transport/parking options getting to the event? There is a range of 4h and 1h on street parking in the streets adjacent to UNSW's Paddington campus. There are numerous buses that travel between Bondi and Circular Quay/Railway Square and Newtown along Oxford Street. The closest train station is Museum. Where can I contact the organizer with any questions? [email protected]

Appendix D

The Patient Objects, UNSW Galleries and touring version label

Appendix E

Example of exhibition label

Appendix F

Eugenie Lee Seeing is Believing participant forms Participant Release Form

Artist Eugenie Lee

Exhibition ‘Seeing is Believing’ One-on-One participatory performance installation total duration approximately 30 mins.

Participation Date/s Thursday 2 June 2016

Participant Full name…………………………………………………….(the Participant)

Participant’s contact Phone: details Email:

Address:

Recording Recording of the Participant as a participant in the Exhibition (the Recording)

1. I, [full name of participant] agree that the Artist may:

(a) incorporate all or part of the Recording (including my image,likeness photograph and voice) in the Recording, in any versions or other media that may evolve from the Recording and in any related advertising and promotional material;

(b) copy, store, reproduce, adapt, alter, rearrange, edit and cut the Recording at Artist’s sole discretion and in any format and in any way whatsoever;

(c) do any or all acts or omissions which would otherwise be an infringement of my moral rights in the Recording and, to the extent allowable by law, I waive any moral rights that I have in the Recording;

(d) authorise, or authorise others to, publicise, display, broadcast, exhibit, distribute and otherwise communicate to the public all or part of the Recording, or otherwise, in any and all media now known or later developed throughout the world, in perpetuity; and

(e) use my name, image, likeness, photograph, voice and biographical material supplied by me for the purpose of promoting and publicising the Recording, in any and all media throughout the world in perpetuity.

2. I agree that the Artist:

(a) will own the entire right, title and interest (including present and future copyright) in the Recording and to the extent required, I assign all of my right, title and interest (including present

Participant Release Form page 1

1 and future copyright) in the Recording to the Artist; and

(b) may assign or licence the benefits of this Release in whole or in part.

3. I acknowledge that the Artist:

(a) is under no obligation to use all or part of the Recording; and

(b) makes no guarantee that any transcript prepared of the Participant’s contribution to the Recording will be wholly accurate in every respect and I release the Artist from any claim by me or anyone on my behalf arising out of the Recording and/or my appearance in the Recording including defamation.

4. I warrant and represent to the Artist that:

(a) the consent of no other person is required to grant the rights I have granted under this Release; and

(b) the statements made by me during the Recording are, to the best of my knowledge, true and correct and that these statements will not violate or infringe upon the rights of others.

5. I agree that I may not interfere, seek injunctive relief or otherwise impair the production, distribution, exploitation, advertising, promotion or publicity of the Recording or any rights in connection with the Recording. I further agree that any dispute arising from or in connection with this Release will be exclusively resolved in accordance with the laws and courts of New South Wales.

6. It is expressly understood and agreed that my sole remedy in the event of any breach of this Release by the Artist will be an action at law for damages, if any.

[INSERT NAME OF PARTICIPANT]:

Signature of Witness Signature of Participant

Name of Witness

Date: Date:

Participant Release Form page 2

If the participant who has signed this release is under 18 years of age, this Release must also be agreed to by the Parent or Guardian of the person appearing.

I am a parent (or guardian) of the person in the Appearance who has signed this release and consent, and I hereby agree that I and the said person appearing will be bound by all the provisions contained herein.

NAME ______(Please Print) (Signature)

DATE

Seeing is Believing Information for Participants

Seeing is Believing is an experimental art and science collaborative project that conveys a type of chronic pain called Complex Regional Pain Syndrome (CRPS). Through a one-on- one interaction between the artist and a participant, the interactive performance installation conveys a metaphorical experience of chronic pain by manipulating each participant’s multisensory experience using the latest technologies.

The project is based on neuroscience research showing that pain is integrated with the person’s environment. It can be influenced by many factors, including vision, touch, hearing, expectations and/or previous experiences.

Seeing is Believing is an exercise to demonstrate, contrary to the common belief that pain reflects only the amount of tissue damage, that the brain can still produce perceptions of pain even in the absence of physical injury. It is also an artistic way of externalising an inherently internal experience, so that the audience can experience something of what it is like to have CRPS. Please note that this artwork is designed not to give pain to you, the participant, however it may or may not involve various types of discomfort depending on your response.

The experience

My interactive performance installation will take you on a one-on-one journey through three stages. Meant to be immersive and somewhat provocative, aspects of this installation may be confronting. Please consider what each stage involves so that I can appropriately tailor the level of the experience to you.

My performance throughout will be friendly and empathetic to make sure that the experience is positive. There will be gentle touch on your hands and head from me. If you are unsure about the appropriateness of the exhibit for you, and would like more details of what is involved and how it might affect you personally, then please check the list of health conditions provided [in the attachment]. The performance can be stopped at a moment’s notice, so if at any time you feel uncomfortable and do not wish to continue simply give the word and it will stop.

Stage 1: A fun Mediated Reality experience using a machine called the MIRAGE to distort your hands on the screen in a manner that is incongruent to what the actual hands are doing.

Stage 2: I take you into a purpose-built anechoic chamber. After a short sensitivity test using a simple TENS machine, I will help you to put on a purpose-built glove and a pair of Virtual Reality (VR) goggles. With a remote control I will then produce individually tailored artistically interpreted CRPS symptoms and visual effects, felt and seen through the glove and VR. In addition, the acoustics of the room will symbolically simulate the altered sensory-cognitive responses of people living with chronic pain. You will be in this room with me for approximately 5-6 minutes.

Stage 3: I will guide you through a simple grounding exercise, discussing your response to each stage of the exhibit, and sharing the concept behind the artwork.

Why is this important?

Pain is invisible, yet it is a very real experience for the people living with it. Pain is difficult to communicate using simple words, and we often have to draw on metaphors to try and describe it, but even those fall short as pain is a complex, individual, subjective, and sensory cognitive experience. This experience is highly affected by the physical-psychological-social environment of the individual. People in long-term pain often live in silent isolation, as often there aren’t enough adequate validation modes available for people with chronic pain.

The purpose of this project is to raise the awareness and understanding of chronic pain in a diverse group of audiences through an immersive whole body experience.

Participation

You will be asked to provide some information as part of the booking process and experience. These questions are for the artist’s future art research and the collaborating scientists’ data collection purpose only. Under no circumstances your information will be shared with any other parties.

The project may not be suitable for people with psychiatric disorders as the experience involves immersive moving images and sensory cognitive manipulations within an enclosed space.

Please read the disclosure for details of medical conditions that may prohibit participation or require modifications to the experience.

These questions are for the purpose of the artist’s future art research and the collaborating scientists’ data collection only. Under no circumstances your information will be shared by any other parties.

The project is not suitable for children under the age of 5. Children between the ages of 5-11 may be able to participate in Stage 1 only.

This work is wheelchair-friendly, however in Stage 1 with the Mirage machine this will depend upon their ability to sit upright/lean forward and also the height of their chair arms.

Seeing is Believing Questionnaire

These questions are for the artist’s future art research and the collaborating scientists’ data collection purpose only. Under no circumstances your information will be shared by any other parties.

Questionnaire:

Name [text box] Age [text box] Sex [text box] email [text box]

Have you heard of CRPS before? [Y / N]

How strongly do you agree with the following statement “Pain is my bodies way of telling me that something is wrong.” (1 = strongly agree, 3 = unsure, 5 = strongly disagree) [text box, or drop down 1-5]

Do you have, or have a history of, any other form of chronic pain? [Y / N] If “Y” then follow up: Would you like to provide more details [text box]

Has a close friend or relative ever experienced chronic pain? [Y / N] If “Y” then follow up: Would you like to provide more details [text box]

Have you used TENS machine before? [Y / N]

Do you tend to be quite sensitive to different things like heat? [Y / N]

Do you have epilepsy? The purpose built glove device has a rapid pulsing sensation. It may trigger adverse reaction to people with epilepsy. [Y / N]

Do you suffer from anxiety or panic attacks? The experience within the VR and the glove device is deliberately designed to heighten the anxiety level. [Y / N]

Do you suffer from claustrophobia? The anechoic chamber is very small. It is deliberately designed in a way so the participant feels isolated from the outside world. Some people feel enhanced sense of calm and peace whereas some may feel overly confined. [Y / N]

Do you suffer from any pain? Is this pain in your right hand? [Y / N]

Do you have any skin conditions or open wounds on your right hand? This is important to know because we will not be able to use TENS on your hand should this be the case. [Y / N]

Do you suffer from any condition that causes reduced sensation in the hands? [Y/N]

Do you have chronic hand pain or a history of chronic hand pain? [Y/N]

Do you have any metal implants in your hands? [Y/N]

Do you have any other condition, medical or otherwise, that we should be aware of? [Y/N] if Y then; Please provide details: [text box]