How Art Works: Stories from Supported Studios [1 ed.] 1032774142, 9781032774145

Citation preview

Walking alongside is a term taken up by narrative scholars to illustrate relational commitments that infuence the ways in which we address the complexity of lives, a process of unfolding temporally, and always in the context of relational connections. This beautifully and engaging piece of work highlights Dr. Watfern’s deep commitment and empathic attention to the experiential wisdom of people. Her eloquent writing draws readers in from the outset and allows them to witness the wonder of integrating the historical, the theoretical, the ecological, and the personal in an intricately woven manner. I highly recommend this book for anyone interested in the lived experience of neurodiversity, the power of art, and the importance of meaningful collaborative research. Professor Katherine Boydell, Head, Arts-based Knowledge Translation Lab, The Black Dog Institute, UNSW, Sydney, Australia Brilliant! Dr. Watfern’s work demonstrates what it means to live in relation with participants over extended periods of time and how doing so helps us gain profound insights. The meaningful and lasting relationships with participants are marked by friendship, collaboration, and a deep sense of response and responsibility. These refect the touchstones of an exceptional narrative inquiry and will guide others as they undertake narrative inquiry studies. The work makes evident that one can be deeply touched by human connections and through the use of art it shows the richness of neurodivergent people’s lives, their courage, integrity, and kindness. Professor Vera Caine, School of Nursing, University of Victoria, British Columbia, Canada Supported studios for neurodiverse artists denied access to creative activity, and to regular art schools, began to appear in the mid-1970s, and have proliferated globally in recent years. In this timely and empathic book Chloe Watfern takes a deep dive into two of them, Project Art Works, founded in 1996 in southern England, and Studio A, founded in 2017 in Sydney, Australia. The author spent time in both organizations, getting to know the people and their interrelationships, their working methods and their hopes and desires. How Art Works is a book about creativity and art-making, to be sure, and it is also a book about what that really looks like from the inside as well as the outside. Artists like Kate Adams, Sharif Persaud, Thom Roberts, and Skye Saxon are presented in depth, not as mute case studies, but with their own voices speaking loud and clear to readers. We learn from them, as well as about them. How Art Works is underpinned by systematic academic research, especially relevant to ethnography, disability studies, and visual culture, providing a thorough understanding of the scope and history of the feld. Yet, this is a refreshingly readable text, driven along by a narrative structure built on the

art of storytelling, and delivering criticality and knowledge in a way that is thoroughly accessible. In How Art Works Watfern provides the kind of detailed analysis necessary for readers to approach a deep and open understanding of these two particular organizations and the people that give them life. She also provides a wonderful example of how others might approach study of similar enterprises across the world. Colin Rhodes, Distinguished Professor of Art, Hunan Normal University This long-overdue book looking at supported studios and their artists and makers is a compelling read – one that poses questions about how you may interpret disabled people and their work. It asks to be read with an openness – prompting you to think and understand deeply about how artworks come into creation, about the role of supported studios, and to recognise the power of art within communities. This is a book I highly recommend with its easyto-follow style and honest content. Be sure to pay attention to the myriad of artwork dotted throughout. Jennifer Gilbert, Director Jennifer Lauren Gallery

HOW ART WORKS

From intergalactic travel to the daily commute, enter this book and be transported to wonderful worlds where art and life intertwine and your ideas of both are upended. Chloe Watfern, a writer, transdisciplinary researcher, and maker, joined two world-leading supported studios to learn about the work of their vibrant collectives of neurodiverse artists. At Studio A, Thom Roberts paints, photocopies, animates, and performs, inviting us to understand people as trains and trains as people (among other things). Skye-Fox, a.k.a. Katerina the Steampunk Ringmaster, a.k.a. Skye Saxon, creates interconnected universes through soft sculpture, drawing, and storytelling. Lisa Tindall writes her life breathlessly in piles of notebooks, words from which she stitches into a dress that conveys some of her experiences. At Project Art Works, Kate Adams and her son Paul Colley walk familiar and strange places, capturing them on flm. A forest of scribbles emerges in an art museum as people meet through graphite and charcoal on paper. Artists and makers like Tim Corrigan, Sharif Persaud, Carl Sexton, and Sam Smith move in and out of the frame, sharing biscuits, paint brushes, and wildernesses. In this book, written as a personal narrative informed by the latest thinking on neurodiversity and art, Chloe tells a tender and exhilarating story of the social and aesthetic dynamics at Studio A and Project Art Works, places like no other. In journeying alongside the complex and astonishing contemporary artists who work there, the book invites readers to radically reconsider their settled ideas of creativity, disability, and care, while learning about lives devoted to making. Chloe Watfern is a maker and transdisciplinary researcher. She holds honour’s degrees in art history and psychology, and a PhD from the University of New South Wales School of Art & Design. She works at the Black Dog Institute.

HOW ART WORKS Stories from Supported Studios

Chloe Watfern

Designed cover image: Thom Roberts, 36 Millennium Trains, 2019, posca on solvent release print, 76 x 58m. Photo courtesy the artist and Studio A. First published 2024 by Routledge 4 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 605 Third Avenue, New York, NY 10158 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2024 Chloe Watfern The right of Chloe Watfern to be identifed as author of this work has been asserted in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identifcation and explanation without intent to infringe. British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library ISBN: 9781032774145 (hbk) ISBN: 9781032739274 (pbk) ISBN: 9781003466703 (ebk) DOI: 10.4324/9781003466703 Typeset in ITC Galliard Pro by Apex CoVantage, LLC

Dedication Gravity, Heaven, and Planet Earth (Lou, Edie and Karl), I love you to the ends of the universe and back.

CONTENTS

List of Figures Preface Acknowledgements 1 Introduction

xiv xix xxiii 1

Introductions at Studio A 1 A kind of dance at Project Art Works 2 Knowledge in art’s defence 4 Beside Judith Scott 8 Intellectual disability, neurodiversity, and photocopying 9 Some things about me 13 References 16 2 Studios Studio A again 18 Project Art Works beginnings 19 A tidy studio 20 An artistic family 21 Working space 21 VBs and photocopies 22 Bathroom Industries 22 Dinosaur Town 25 Transformation 29 A happening 30 Value 30

18

x

Contents

An ofering to the trains 31 Artists and makers 33 I am an artist 34 Woody Tiger 35 The self vanishes 37 Being with 38 Songs 39 A piano 39 Dumb and mute 39 References 43 3 Writing beside

46

Should art speak for itself? 46 What I did 48 Writing culture 48 Othering 50 Narratives of socially engaged art 52 Critical space 55 Attention 56 Looking 57 Listening 57 Making 58 Codes and lists 59 Storied lives 60 Thin-flm interference 61 What have I done? 61 References 64 4 Project Art Works: The Not Knowing of Another A flm 68 Theory of mind 69 Calm bafement 70 What she knows 72 Pat pat pat 74 Paul: I 74 Eden: mind as landscape 77 Paul: II 79 Knowing, not knowing 80 Carl 82 They lead I follow 84 Explain being in the moment 84

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Contents

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Paul: III 85 Looking at the sky 86 The remains of something 86 Back to brown 87 What I know 89 References 90 5 Thom Roberts: Making together

92

Making 92 An animation 94 Locomotive reproduction 94 Hairdryers and photocopiers 96 Fragment of fridge 98 Art bank 100 Tim Tams at Kennedy’s 100 Photocopier conversations 107 Crowded people 108 Thom and Angelmouse 108 Thom and Santa Claus 111 Making Thom move and making decisions 113 Remote control 115 A cure? 116 References 117 6 Lisa Tindall: How disability feels An owl and some words 118 A letter 120 Life story 121 Reading the journals: I 121 Nothing about us without us 124 Two dresses 128 A painting of a mother 132 Skulls 132 Reading the journals: II 136 Reading the journals: III 139 On writing 140 Reading the journals: IV 141 Life practice 143 Impact 143 Know how we feel 143 References 145

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Contents

7 Skye Saxon: Kicking a thought bubble

146

Steampunk Ringmaster 146 Into a head 147 Pixie assistant 153 Stranger 154 Catching stories in my net 155 At the art gallery: I 157 On the creative process 157 Hattel Aquereum 157 Inscriptions 159 At the art gallery: II 160 Stuck and unstuck 161 Skye writing 162 The whole story 163 Characters and cream pies 163 Elemental empathy 165 Be someone else 166 A maze 166 References 167 8 Madame Witch: Between worlds How would you start? 168 My reading 168 Do you want to know what they say? 170 Vice versa 170 Between worlds 172 The Hanged Man 172 Tiny writing and tents 174 Spirals 176 Explanation 179 Encounters 181 Primal envy 182 Climb down in 183 Flavia Dujour 184 The sympathetic gaze 186 It is what it is 188 Thinking in pictures 189 References 192

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Contents

9 Project Art Works: Illuminating the Wilderness

xiii

193

Sharif: I 193 Ecological selves 196 They looked like trees 197 That’s my son 200 Gabriella: we spoke about the trees 202 What do you see? 204 Tim 205 Sharif: II 206 Why did he cry? 209 Consent 211 George and Sam 212 A rocket 216 Sharif: III 217 References 220 10 Thom’s way with crowns and trains

221

Budgie keynote 221 A mind in everything? 223 Emotions 224 Crowns 224 Andrew 228 Kenny Matthews 234 Crowns again 236 The gifts I have given and the gifts I have received 240 A magic show 241 Disability 245 Thom’s way 246 References 248 11 Verbs and nouns and the work of art

249

The lyric and I 250 What does this art do? 251 Careful attention 252 What has this art done? 253 Work 254 References 255 Index

257

FIGURES

0.1 0.2 0.3 0.4 1.1 1.2 1.3 2.1 2.2 2.3 2.4 2.5 2.6

Lisa Tindall, Magical Art Artists, 2022, cofee wash, watercolour pencil, watercolour markers, and acrylic paint on canvas, 38.5cm × 56cm. Skye Saxon, Cheese Brain, Ice on the Brain, Fashionable Brain, Fuzzy Brain (clockwise from top left), 2022, marker and texta on paper, 15cm × 21cm each. Thom Roberts, Kenny Sylvester Skeleton, 2022, acrylic marker and pencil on paper, 70cm × 50cm. Skye Saxon, Professor Smarty Pants and Professor Brainiac, 2022, marker and texta on paper, 21cm × 15cm each. Gemma, Untitled, 2017, acrylic on canvas, 153cm × 153cm. Damian Showyin, Squares and Windows on Weaving, 2020, wool, canvas, acrylic paint, and cotton, 58cm × 50cm. Thom Roberts, The Magic Photocopier Goes to Cloud Heaven, 2019, acrylic, ink, gouache and pencil on paper, 56cm × 76cm. Anonymous, Workshop, polaroid. Thom Roberts, Kenny Police Cop, 2021, acrylic on paper. Commissioned by The National Justice Project for Law Hack 2021. Thom and Angelmouse, Rush Hour at Cloud Heaven, 2017, flm still from three-channel video installation. Thom Roberts, Kangaroo Town Tunnel, 2018, collage, 25.5cm × 35cm. Katrina Brennan, Grid and Diamonds, 2018, acrylic on wood, 14.8cm × 14.8cm × 1.9cm each. Thom Roberts, A Silvery Side, 2020, acrylic on canvas, 80.8cm × 116cm.

xix xx xxi xxii 4 7 12 19 23 24 28 30 32

Figures

2.7 Siddharth and Susmitha Gadiyar, Phoenix Art Space, 2019. 2.8 Lisa Tindall, Thom Skulls, 2020, acrylic on canvas board, 41cm × 62cm. 2.9 Thom Roberts’ desk, 2019, including piano keys and a drawing of Woody Tiger. 2.10 Siddharth Gadiyar, Mandala 7, 2018, paint on paper, 240cm × 240cm. 2.11 In the Realm of Others, De La Warr Pavilion, 2015. 4.1 Kate Adams, The Not Knowing of Another, 2008, flm still. 4.2 Kate Adams, The Not Knowing of Another, 2008, installation view and flm still. 4.3 Anonymous, Workshop, polaroid. 4.4 Paul Colley in the studio, 2019. 4.5 Eden Kötting work in progress, Project Art Works studio, 2019. 4.6 Carl Sexton, Untitled, 2014, painting/collage, 151cm × 242cm. 4.7 Project Art Works bin, 2019. 5.1 Thom Roberts, Kermit the Frog, 2020, acrylic on paper, 29.5cm × 21cm. 5.2 Thom Roberts, Easter Station, 2019, screen shot from work in progress for augmented reality animation in Thom Roberts, City Circle Line, 2019. 5.3 Thom Roberts, Untitled (Positive & Negative), 2018, acrylic and textile on canvas, 50cm × 50cm. 5.4 Thom Roberts, Cloud Heaven, 2019, drawing on paper for augmented reality animation. 5.5 Thom Roberts, 1983, 2019, pencil on paper, 21cm × 29.5cm. 5.6 Thom Roberts, Magic Robot Machine, 2020, acrylic and ink on cardboard with AR Animation, 30sec loop. 5.7 Thom Roberts, Baby Bo, 2018, acrylic on canvas, 2020, 46cm × 40cm. 5.8 Cofee cup towers and a painting in Thom’s room, 2019. 5.9 Thom Roberts, Blades of Fan, 2020, oil pastel, gouache, and acrylic on paper, 35cm × 27cm. 5.10 A marked up calendar and a wall in Thom’s room, 2019. 5.11 Items from Thom’s memory box. 5.12 Thom and Angelmouse, Best Friends Going Through a Tunnel, 2018, digital collage. Exhibited at Firstdraft, Paired, Sydney, 2018. 5.13 Thom Roberts and performer Teodora Castalucci during a Residency at Socìetas Rafaello Sanzio, Cesena, Italy, 2019. 5.14 Thom Roberts’ cartwheels practice in Photoshop, 2019. 5.15 Thom Roberts, Blue Rattler Machine, 2020, acrylic on canvas, 80.2cm × 116cm.

xv

34 35 36 38 40 68 73 75 76 78 83 88 93

95 96 97 97 99 101 103 105 106 107 110 112 114 115

xvi Figures

6.1 Photo Lisa sent me after I asked her to write with me for Art et al and told her we would get paid, 2021. 6.2 Three of Lisa’s notebooks. 6.3 Detail from Lisa’s notebook. 6.4 Lisa Tindall, age 14. 6.5 Lisa Tindall, My Formal Dress, 2018, embroidered blue velvet and red satin, 230cm × 50cm. 6.6 Lisa Tindall, My Formal Dress (detail), 2018. 6.7 Chloe’s notebook with artwork on the cover by Lisa Tindall: Pink Skull, 2015, 50cm × 50cm. 6.8 Tea, croissants, and a drawing of a skull by Lisa Tindall, 2019. 6.9 Lisa Tindall, Skull Face with Purple Flower, 2013, acrylic and texta on paper, 29.5cm × 21cm. 6.10 Lisa Tindall, Coloured Sunshine Skull, 2017, gouache, texta, and posca on paper, 41.8cm × 29.5cm. 6.11 Lisa Tindall, Red Tail Black Cockatoo Hand Puppet, 2018, textile, 37cm × 15cm × 1cm. 6.12 Detail from Lisa’s notebook: the conference. 6.13 Lisa Tindall, Betty Boo, 2020, cotton, acrylic and beads on canvas, 36cm × 28cm. 7.1 Skye Saxon as Katerina the Steampunk Ringmaster, 2018. 7.2 Skye Saxon, Babaluey, 2019, soft sculpture, 51cm × 27cm × 8cm. 7.3 Skye Saxon, Gutsman, 2019, soft sculpture, 76cm × 45cm × 21cm. 7.4 Skye Saxon, Fauramondo, 2019, soft sculpture, 64cm × 29cm × 12.5cm. 7.5 Katy Plummer and Skye Saxon dressed as Wil from Marsytopia, with other Oddysee characters, June 2019. 7.6 Skye Saxon, Creature Red, 2016, textile mask, 26cm × 33cm. 7.7 Skye Saxon, The Beach of Four Suns, 2021, pencil, texta and ink on paper, 295cm × 41.5cm. 7.8 Skye Saxon, Cosmic Equation, 2018, pen on paper, 11.5cm × 31.5cm. 7.9 Skye Saxon, Night Webbing, 2021, texta, glitter gel pens and ink on boxboard, 29.5cm × 42.5cm. 7.10 Skye Saxon, Magical Handwriting II (detail), 2019, gel pen on paper, 49.5cm × 25cm. 7.11 Skye Saxon, Frosted Webbing, 2020, acrylic and posca pen on canvas, 51cm × 76cm. 8.1 Skye Saxon as Madame Witch, 2021. 8.2 Skye Saxon taking a break from Madame Witch with her mum Karina, Carriageworks, 2021.

119 122 123 127 130 131 132 134 134 135 137 138 142 146 148 150 152 154 156 158 160 161 162 164 169 171

Figures

8.3 Skye Saxon, The Flying Fox and The Tower, 2020, ink and pencil on paper, 15cm × 10.5cm each. 8.4 Skye Saxon, Snowfake Shaman’s Winter Wonderland, performance for Cementa Festival, Kandos, 2017. 8.5 Skye Saxon, Oddysee installation view at Cement Fondu, Sydney, 2019. 8.6 Skye Saxon, Wheel of Fortune, 2020, ink and pencil on paper, 15cm × 10.5cm. 8.7 Skye Saxon, The Serpent, 2020, ink and pencil on paper, 15cm × 10.5cm. 8.8 Skye Saxon, The Lion Strength, 2020, ink and pencil on paper, 15cm × 10.5cm. 8.9 Skye Saxon, The Fool, 2020, ink and pencil on paper, 15cm × 10.5cm. 8.10 Skye Saxon, The Hermit, 2020, ink a pencil on paper, 15cm × 10.5cm. 8.11 Madame Witch installation view, Carriageworks, 2021. 8.12 Skye Saxon, Magical Handwriting II, 2019, gel pen on paper, 49.5cm × 25cm. 9.1 Project Art Works, Illuminating the Wilderness, on location in Glen Afric, 2018. 9.2 Sharif Persaud, Untitled, 2017, acrylic and ink on paper, 2.2m × 1.5m. 9.3 Project Art Works, Illuminating the Wilderness, 2019, flm still. 9.4 Illuminating the Wilderness drawings installation, Tate Liverpool, 2019. 9.5 Project Art Works, Illuminating the Wilderness, 2019, flm still. 9.6 Page from Gabriella and Rachel’s process diary. 9.7 Gabby R, Untitled, 2014, pipe cleaners, 14cm × 21cm × 9cm. 9.8 Sharif Persaud, The Mask, 2017, flm still. 9.9 Sharif Persaud, Untitled, 2015, acrylic on canvas, 41cm × 41cm. 9.10 Project Art Works, Illuminating the Wilderness, 2019, flm still. 9.11 George Smith and Rachel Hines, Project Art Works studio, 2018. 9.12 Sam Smith, Untitled, 2020, ink/acrylic, 152cm × 122cm. 9.13 Sam Smith, Project Art Works studio, 2019. 9.14 Project Art Works, Illuminating the Wilderness, 2019, flm still. 9.15 Sharif Persaud, Self Portrait, 2015, acrylic on paper, 1.8m × 1.2m.

xvii

173 175 176 177 179 180 182 186 187 191 194 195 197 199 201 203 203 207 209 210 213 214 215 216 218

xviii Figures

9.16 Sharif Persaud, Did You Hear?, 2017, acrylic, paint pen, and felt pen on paper, 1.5m × 2.9m. 10.1 Thom Roberts, Abudgiekeuote, 2020, oil pastel, 21cm × 15cm. 10.2 Thom Roberts, 36 Millennium Trains, 2019, posca on solvent release print, 76m × 58m. 10.3 Thom Roberts, Crown Through the Magic Eye 1, 2008, digital photograph. 10.4 Thom Roberts, Positive and Negative of Thom Roberts, 2017, installation view, Kandos Cuts, Colours n Curls during Cementa Festival. 10.5 Thom Roberts, Thom Roberts Counts Trains, 2019, installation views, eighteen resin-coated polyester fabric banners. 10.6 Thom Roberts, Kenny Matthews Father, 2017, acrylic on canvas, 93cm × 77cm. 10.7 Thom Roberts, Millennium Train, 2017, acrylic and posca pen on canvas, 113.5cm × 81.5cm. 10.8 Thom Roberts, Kenny Matthews Tangara, 2018, acrylic on canvas, 116.5cm × 71.5cm. 10.9 Thom Roberts, A family of black bears (Chloe’s crown reading), 2019, posca pen on tracing paper, 42cm × 29.7cm. 10.10 Thom Roberts, Millipede (detail from Chloe’s crown reading), 2019, posca pen on tracing paper, 42cm × 29.7cm. 10.11 Hands on Thom Roberts’ crown, 2018. 10.12 Thom Roberts, City Circle Line, 2019, print with augmented reality animation. Installation view, Sub-Base Platypus, home, North Sydney. 10.13 Postcards Home, 2019. 10.14 Thom Roberts, Mirror Image of Faces, 2020, ink and acrylic on paper, 50cm × 70cm.

219 222 225 227 228 229 231 232 235 238 239 240 242 244 246

PREFACE

Attention please. Please pay attention. This book is about art and how art is made and some of the people who make it.

FIGURE 0.1

Lisa Tindall, Magical Art Artists, 2022, cofee wash, watercolour pencil, watercolour markers, and acrylic paint on canvas, 38.5cm × 56cm.

Source: Photo courtesy the artist and Studio A1

xx

Preface

It uses a lot of words to show how we can respect diferent brains and connect through art by paying attention with our whole bodies: our eyes, our ears, our mouths, our hearts, our hands, even our toes.

FIGURE 0.2

Skye Saxon, Cheese Brain, Ice on the Brain, Fashionable Brain, Fuzzy Brain (clockwise from top left), 2022, marker and texta on paper, 15cm × 21cm each.

Source: Photos courtesy the artist and Studio A

Preface

FIGURE 0.3

xxi

Thom Roberts, Kenny Sylvester Skeleton, 2022, acrylic marker and pencil on paper, 70cm × 50cm.

Source: Photo courtesy the artist and Studio A

xxii Preface

If you can’t read this book that’s OK. Maybe I can tell you about it another way. If you do want to read this book – HOORAY! Turn the page.

FIGURE 0.4

Skye Saxon, Professor Smarty Pants and Professor Brainiac, 2022, marker and texta on paper, 21cm × 15cm each.

Source: Photos courtesy of the artist and Studio A

Note 1 I commissioned the three Studio A artists who are at the heart of this book to illustrate this preface. The commissioning process continued the conversation between my research and their work, while helping make this book as accessible as possible to the artists of Studio A, and to other people who may not want to read all these words. Many thanks to the UNSW Disability Innovation Institute for their fnancial support of these commissions.

ACKNOWLEDGEMENTS

This book was made on the lands of the Gadigal, Bidjigal, and Cammeraygal people, whose sovereignty was never ceded. I pay my respect to Elders past and present and extend this respect to all Aboriginal and Torres Strait Islander people. Thank you. This book couldn’t have been made without the support of so many: those who suggested new ways of thinking and being, those who cared, those who listened, and those who answered. Some of you did all those things at once. Makers and supporters of Studio A and Project Art Works – all those named throughout this book, and all those who didn’t fnd their way in – your generosity, patience, and insights hold the foundations of this work. Thank you. Jill Bennett and Katherine Boydell, you guided me with wisdom and just the right combination of freedom and constraint. Thank you. Mark Tredinnick, you helped me make my words sing. Thank you. All of my mentors and collaborators – Julian Trollor, Iva Strnadova, Barbara Doran, Michele Elliot, Gaynor Macdonald, and other colleagues at the Black Dog Institute and Maridulu Budyari Gumal SPHERE – you have each taught me more things than I can name here. Thank you. Close readers – Kati Watson, Julie Green, Nea Cahill, Gabrielle Mordy – your eyes on these pages improved them immensely. Thank you. My family – Mum, Dad, Lily, Theresa, Lloyd, Louis, Edith, Bean – we have lived interdependence daily, and you have kept everything in perspective: soft ears, hot meals, crayons, and clean washing. Thank you. Karl, you have always been by my side, plus you read a draft late into the nights. Thank you for seeing me through with love. This one’s for you.

1 INTRODUCTION

Introductions at Studio A

I arrived breathless. Earlier, I  had walked past the community hall selling second-hand books but didn’t take a look (well, OK, maybe a glimpse). Then, I climbed four fights of stairs for the fun of it. I could have used the lift. But instead, I ran my hands gently along the stairway’s brass balustrade, patchy in places from other hands doing the same thing. I arrived breathless and padded slowly over the carpeted foor, through the tinsel hanging from the open double doors. The room I entered, tentatively, was flled with light and people hard at work. Out the windows I saw a minimetropolis, always under construction, with its cranes and scafolding framing the northern suburbs of Sydney, green and sprawling. Inside: art stuf in teetering towers, spreading across trestle tables – beads, thread, wool, paint, crayons, pencils. Canvases were leaning against cupboards, and papier-mâché sculptures dried slowly on shelves. There was a song playing that sounded familiar, but I couldn’t place it. Something with a bit of soul. I noticed shoulders moving in time, the wiggle of feet. While I drank the scene in, a man approached. He had a very particular way of pacing the foor, as though he always knows exactly where he is going, even when he doesn’t. He was wearing socks and sandals and black plastic glasses with no lenses. He was joined by a woman in green, some bangles, eyes lined lightly with black. She spoke frst. “Hi, I’m Gabrielle, nice to meet you.” She turned to the man, “Thom, would you like to introduce yourself?” He didn’t hesitate: “My name is Thom Roberts, I am the country express train and the Burj Khalifa tower in Dubai, the tallest tower in the world. And DOI: 10.4324/9781003466703-1

2

Introduction

this,” he started to whisper, pointing his body towards Gabrielle, hands cupped at the sides of his mouth, “Is Kylie Madonna the bush kangaroo.” I’d heard of Thom Roberts. Not Tom Roberts the Australian landscape painter from the Heidelberg School, whose paintings hang in the frst chambers of our state institution, The Art Gallery of New South Wales. Not that Tom Roberts. This Thom Roberts is also a painter, and so much more. I’d seen his work around town, in Sydney’s small art world. I’d had his postcard stuck on the wall above my writing desk – a face with three eyes and two noses, brilliant blue lines. I’d heard of Gabrielle too (a.k.a. Kylie Madonna), the artistic director and CEO of this place, Studio A. On the organization’s website, it is described as a supported studio “that tackles the barriers that artists living with intellectual disability face in accessing conventional education, professional development pathways and opportunities needed to be successful and renowned visual artists”.1 I was there to fnd out what that means. I was there to meet the artists. I didn’t know it yet, but I was there to create an account – slowly, cautiously, sometimes anxiously, step by step, and certainly only partial – of the work being done, the things being made, and of course, the people. Thom Roberts continued around the room, introducing each person – his friends and colleagues. There was Woody Tiger, who also goes by Emma Johnston, the principal artist facilitator. There were Cinderella and Tinkerbell, Snoopy and Kermit, Wilbur and Simba. There was Foxy, who prefers Skye Fox but also goes by Katerina and Wil and Madame Witch on occasion; the name on her birth certifcate is Skye Saxon. We will meet her again. And we’ll also meet Snow White, who goes by Lisa Tindall these days. She calls Thom Charlie, after the character in Peanuts. I would fnd out later that, on Fridays, she brings Thom home-made spaghetti Bolognese for lunch and he gives her $5. I would fnd out later that Thom is not his birth name either. Born Robert Hamilton Smith on the 23rd of January 1976, Thom’s adopted mother still calls him Rob and he is listed as Robert “Thom” Smith on the roll, which he signs each morning with his other nom de plume, Tim Tams. As for me, I’m now Zoe from Sesame Street. My sister’s name is Chloe, which makes things a bit confusing. My mother’s name is Duchess. Whenever I  arrive at the studio, Thom will say, “Hello Zoe, how’s your sister Chloe going? And how’s your mother, Duchess?” And I’ll say, “Hello Thom Roberts. My sister Chloe is very well. And so is my mother. But how are you?” He’ll most likely nod his head vigorously, give me a one-word response like “good”, and get back to business. Introductions over, for the time being. A kind of dance at Project Art Works

Later, on the other side of the world, I saw two people dancing. There was a paint brush between them, and a small plastic tub flled with red acrylic paint,

Introduction

3

or was it pink? A big drop cloth had been taped up over a white wall and foor, already covered in fecks of paint. Over the drop cloth, a canvas. The sound of gulls. The sound of a train, rattling the glass windows that look out onto a small, paved courtyard at the rear of the Project Art Works studios, under the three arches of a road bridge next to a railway track in the small seaside town of Hastings in southern England. On this organization’s website, it describes itself as “a collective of neurodiverse artists and activists”, with programmes that “evolve through creative practice and radiate out to awareness raising in the cultural and care sectors”.2 The sound of wet paint tapped and slapped onto canvas; now softly – a stroke. The paint dripping. “I’m happy, I’m happy,” said Gemma. “Gemma’s happy, Georgie’s happy,” said Georgie. I noticed how Georgie ofered Gemma choices. “Here are some colours,” she said, leading Gemma over to the table where more thick globs of acrylic sat in tubs waiting to be chosen. And then, “Here’s a big brush and a small brush; which one do you want?” Decision made, by a small gesture, they continued their dance. Gemma wielded her brush, sometimes towards Georgie, whose shirt was also covered in paint. Sometimes Gemma sat, hand moving along the paper Georgie had prepared on the table before her. Other times, she leaned against the wall, Georgie encouraging her to move along a little from the canvas because she was rubbing up against the marks she had already made. Smudge, smudge, smudge. Kate Adams, the director of Project Art Works, once wrote that the people who have shaped her organization share a purpose: which is not to do ‘good works’ but to pursue a vital enquiry: to fnd out what someone is capable of and to explore with them the possibilities of art through collaborations that foster choice, subjective preference, intuition and non-verbal interaction. This is infnitely interesting territory. It holds our attention and propels us to continually shape new approaches to art and collaboration. (Adams & Shaw, 2012, p. 10) As though reading my thoughts, Georgie smiled and whispered to me as she walked past to the sink, her hands covered in paint, “It’s like dancing, when I’m working with Gemma.” I had travelled from Sydney to sit in this studio so that I could learn more about the dance. How is it orchestrated? Where does this art come from and where does it go? I would fnd myself in museums and galleries. I would fnd myself in front of screens showing flms of the making and the moving through spaces that this organization does so well.

4

Introduction

FIGURE 1.1

Gemma, Untitled, 2017, acrylic on canvas, 153cm × 153cm.

Source: Photo courtesy the artist and Project Art Works

Knowledge in art’s defence

The author and critic Susan Sontag (1966/1990) wrote in her essay “Against Interpretation”: “None of us can ever retrieve that innocence before all theory when art knew no need to justify itself, when one did not ask of a work what it said because one knew (or thought one knew) what it did” (pp. 4–5). In this book, I do aim to justify art. I show how it works – what it does; what it has done for particular people in particular places. I try to make an art of it. But I also fll a critical gap. Artists with intellectual disability, and the studios that often support them, are still largely undocumented in the critical and academic literature. We do not know what we do not know. We do not see what we do not see. We do not hear what we do not hear. This book redresses

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ongoing invisibility and silence. At the same time, it challenges modes of thinking that seek to classify and defne. Through stories of particular people and practices, I conceptualize art as a mode of being, a way of communing with the world, and each other within it. I model an ecological mode of creative research, informed by traditions of narrative and ethnographic inquiry, that is embodied, inclusive, and intimate. My writing stems from paying close attention to the people and practices I encountered: watching, listening, and sometimes making alongside. I paid attention and created an account of what I  learned. Through my writing, I show and tell how I navigated this approach and the infuence of the organizations’ methodologies on my practice. I reveal the relationships that evolved between myself and some of the people I came to know through my inquiry. I situate this as an ethical imperative: to do research with and for, rather than on and about, other people – or, to put it another way, to make together this thing called knowledge. I  reveal moments of slippage or discomfort, where I did not know who my inquiry was for, and when I felt complicit in an inaccessible system of knowledge creation. Certainly, I have created my account in a way that strives to do justice to the artists’ and makers’ own ways of understanding what they do, in a way that strives to honour their art and their lives and the many points where those two things meet. I show what I don’t know about any of those things. Just as I show what I have found out. In so doing, I strive to honour the nonverbal, the ambiguous, and the uncertain, just as I use words to describe and explain. In this sense I follow Petra Kuppers, who wrote: My writing aims to open up a conversation about what it would mean for an art institution to honor nonverbal communication, or to present dense and uncertain verbal felds as part of the discourse about art, not just as part of the art. With this conversation, we are entering the exciting ground of disability arts inventions: a challenge to the way things are done, challenges to what it means to be in public. (Kuppers, 2016, p. 95) Like Kathleen Stewart, I want to “slow the quick jump to representational thinking and evaluative critique long enough to fnd ways of approaching the complex and uncertain objects that fascinate because they literally hit us or exert a pull on us.” Like Kathleen Stewart, “my efort here is not to fnally “know” them – to collect them into a good enough story of what’s going on – but to fashion some form of address that is adequate to their form” (Stewart, 2007, p. 4). Despite my frustrations with language, despite constantly butting up against its limits, I have learned that words, when used in the right way – carefully, lyrically – can help get the unsayable said.

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Susan Sontag’s (1966/1990) goal was to defate the idea that a work of art is its content – that it says something. This is an idea, she argues, that fuels the “never consummated project of interpretation” (p. 5), “the revenge of the intellect upon art” (p. 7). *** During my early visits to Studio A, all the faces were a blur. I clung to the few anchors I could fnd – a chair near the northern window and the plan drawers, or the simple task of untangling wool with the artist Damian Showyin and then twisting it around wooden hoops to make Christmas decorations. Sometimes, I wrapped the wool around my fngers, troubling the knots and snipping them in places where they seemed too impenetrable. I held the hoop while Damian twisted the yarn around and around and around. I remember, while we worked, sinking into the almost-silence that comes with making. Later, I would watch him weave, and lose myself in the repetitive motion, Damian’s hands guiding the wool under, loom clicking the thread in line, again and again and again. Later, I would watch him paint, his brush moving down the lines already painted on the canvas, layer upon layer upon layer of lines – purple, blue, yellow, pink – like the jostling edges of buildings. Through windows, I could see the remnants of another day’s work. I remember, I asked Damian what his paintings are about. He said, “I don’t know. Colour.” *** In place of this shadow world of meanings, waiting to be uncovered, what – Sontag asked – might a critic explore? Return to the senses, she said. “Reveal the sensuous surface of art without mucking around in it” (p. 13). In my writing, I have sometimes relished in surfaces because that was what pulled me in – paint making its way across a canvas, or wool through a loom. But I couldn’t help myself from mucking around – wrapping the wool around my fngers. I couldn’t help myself from asking why, and “what’s that about?” I have wanted to know about people, and I have wanted to know about the meanings they have made for what they do. I found out that Damian loves James Bond, and he used to work in a coffee cart, and that once when he had a bad bout of gastro and was admitted to hospital, he messaged Woody (a.k.a. Emma Johnston), the lead artist at Studio A, at three in the morning, asking her to fx his loom. *** Ann Hamilton (2009) once wrote that “every act of making matters. How we make matters.” Art, she said, reminds us “of our power to make the world.” Words, too, can be acts of making. Words can do things. ***

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FIGURE 1.2

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Damian Showyin, Squares and Windows on Weaving, 2020, wool, canvas, acrylic paint, and cotton, 58cm × 50cm.

Source: Photo courtesy the artist and Studio A

In the Oxford English Dictionary, the word ‘art’ is frst defned as “a skill in doing something, esp. as the result of knowledge or practice”. I am drawn to an early example of usage, written in 1549 by a priest: “As the spyder spynneth her webbe with muche arte.”

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Beside Judith Scott

A photograph of Judith Scott beside one of her sculptures is the frontispiece of Touching Feeling by Eve Sedgwick (2003). Judith Scott stands beside her sculpture, but they are not separate. They are in an embrace, the artist’s head pressing deep into the fbres of the form she has made. “Not only the artist’s hands and bare forearms but her face are busy with the transaction of texture,” writes Sedgwick. “There is no single way to understand the ‘besideness’ of these two forms, even though one of them was made by the other” (Sedgwick, 2003, p. 22). Eve Sedgwick uses the word ‘beside’ to get around words like ‘beneath’ and ‘behind’ and even ‘beyond’, to get around “the topos of depth or hiddenness, typically followed by a drama of exposure” that, she argues, had been the staple of critical work in the decades preceding her. Ironically, in an early monograph about Judith Scott the art historian and psychoanalyst John MacGregor writes: As with a pearl, at the heart of each of Judith’s objects some sort of hidden thing functions as a central core, serving as the basis for her concern with covering over and concealing. There is a hidden inside, and layers and layers beyond. (MacGregor, 1999, p. 35) At one point, Scott’s sculptures were x-rayed to see what forms lay at their centre – a hollow boot, a fan, a shopping trolley – all wrapped in twine and string and fabric and wool. Judith Scott spent thirty-fve years of her life in state institutions, before arriving at Creative Growth Art Centre in Oakland, California, in 1987, at the age of forty-three. From there, she created a body of work that has been applauded and investigated and exhibited in all kinds of ways, from all diferent angles. I introduce this artist and the words written about her here, in part, because there have been so many of them. In part, because the ways of thinking about her and her work start to touch upon the diferent lenses through which people approach the work being done in studios like Creative Growth in California, like Studio A in Sydney, like Project Art Works in Hastings. Because Scott had Down syndrome, was deaf, and did not speak, her work has often been understood in terms of her biography, and in terms of lack – for example, that she could not have possibly conceived of what she was doing as “Art” (MacGregor, 1999). The question of whether or not her work is art, and what kind of art it might be – outsider, outlier,3 other – doesn’t particularly interest me. How people have approached her work, and how they have used it to think about art, or diference, or disability – that’s what I want to interrogate here.

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Intellectual disability, neurodiversity, and photocopying

Applying the label of intellectual disability to an artist like Thom Roberts does not do justice to the cognitive diferences that shape his experience of the world, infected by his autism. The same applies to all the artists supported by Studio A and Project Art Works. To attempt to describe, defne, or categorize someone according to their intellectual capacity is a project with a dark history, ushering forth the everpresent shadow of eugenics, institutionalization, and pervasive social stigma.4 I could run through a list of terms that, in their time, were used to pin people down – terms like ‘idiot’, ‘moron’, and ‘imbecile’; ‘feebleminded’, ‘mentally defective’, and ‘retarded’. Sinason (2010) writes: No human group has been forced to change its name so frequently .  .  . What we are looking at is a process of euphemism. Euphemisms, linguistically, are words brought in to replace the verbal bedlinen when a particular word feels too raw, too near a disturbing experience. (p. 34) For now, let me say that the term ‘intellectual disability’5 is used to describe and categorize people who have signifcantly lower-than-average IQ and associated difculties in their ability to do things that a ‘neurotypical’ might take for granted, like communicating verbally or learning certain skills. Intellectual disability is commonly associated with genetic conditions such as Down syndrome, but it can also co-occur with other “diagnoses”, like autism. ‘Intellectual disability’ is a term used to guide policy, practice, and research, in part because it enables forms of support that target some of the specifc barriers people given that label may face in their lives. Here, I am trying to navigate ways of articulating physical and cognitive diference – and diference from what, or whom? Some idealized ‘norm’? I do this while keeping in mind the work already done by scholars and activists in the feld of disability studies. A founding father, Michael J. Oliver, pioneered the social model of disability. He argued that disability is all things that impose restrictions on disabled people (Oliver, 1996). This understanding of disability was formed in contrast to medical models that focus on impairment or defcit within an individual, and which are often associated, at least in the popular imagination, with ‘tragedy’. Some have argued that the diagnostic tools of psychology and education efectively reinforce a construct of intellectual disability via the fawed tool of the Intelligence Quotient (Kliewer, Biklen,  & Petersen, 2015).6 Intelligence is so much more than what can be measured on a psychometric scale. Psychologists like Gardner (2004) have helped create ways of thinking about, and measuring, “multiple intelligences”, yet these are still frmly situated within an individual. Theories of distributed, ecological, and enactive cognition help us

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to locate cognitive activity, to locate intelligence (and mind more broadly), beyond the skin – in dynamic systems connecting individuals, their environments, and the socio-cultural landscapes in which they move (Hutchins, 1995, 2010; Bateson, 1987; Thompson, 2007). In this way, neat arguments about the social construction of disability tend to unravel when we look closer at the complex entanglement between disabling environments or societies and the lived reality of cognitive diference (Fraser, 2018; Shakespeare & Watson, 2001). The term ‘neurodiversity’, coined by Judy Singer in the early 1990s, has helped me think about our skin-bound brains ecologically. The term has been adopted by a social and cultural movement largely pioneered by autistic, or neurodivergent, self-advocates and activists. They frame autism as a neurological variation that produces distinct, sometimes atypical, ways of thinking and interacting with the world that can manifest quite diferently in diferent individuals, and which are part of a wider spectrum of variation in the human experience (Singer, 2016). In the words of autistic artist Jon Adams: Strictly speaking ‘neurodiversity’ should embrace all human variations that have the potential to enrich society as ‘biodiversity’ does our planet. We need people who think radically diferently or perceive the world in a totally diferent way but often diference can be scary. (Adams, 2015) Embracing neurodiversity requires us to question what we mean by independence, by intelligence, by knowledge, and by care. In The Minor Gesture, Manning (2016) follows the ideas and activism ofered by the neurodiversity movement to “honor complex forms of interdependence and to create modes of encounter for that diference” (p. 5). Shifting our focus from the individual to social, relational, and sometimes physical, interdependence has radical implications. For one, it helps redefne and expand our narrow basis for a morality of personhood, focused as it often is on the autonomous actions of individuals (Kittay & Carlson, 2010). The philosopher of care and morality Eva Kittay’s daughter Sesha has a profound cognitive disability. Kittay’s life work has been profoundly informed by their relationship. In an essay that grapples with feminist care ethics and interdependence, Kittay (2020) writes: Sesha’s dependency has not been merely a burden or a problem; it has been the occasion for a particular sort of interaction and a particular sort of closeness. This extreme dependency can shed light on the dependency we all experience at some time in our life. (p. 4) Kittay emphasizes that dependence is a natural “part of any human life lived intertwined with others” (p. 5). And yet, something about it is hard to

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swallow. We fear dependence, and perhaps this is one of the reasons that we stigmatize and devalue the disabled body. On the other hand, there’s always the risk that we get caught up in a “feel good” politics that reinforces the status quo – a performance of diversity and interdependence, where “categories that mark diference are smoothed over” (Friedner & Weingarten, 2016, p. 2). I don’t mean to suggest that we are all the same in our diferences. Audre Lorde’s (2018) command rings true: let us not simply tolerate diference but see it “as a fund of necessary polarities between which our creativity can spark like a dialectic. Only then does the necessity for interdependency become unthreatening” (p. 18). All this is to say that ‘intellectual disability’, ‘autism’, and ‘neurodiversity’ are all terms that can help us think about specifc but shifting instances within the human spectrum of cognitive diferences. They are helpful insofar as they allow us to fnd ways to honour diference and interdependence, while seeking new ways of being in the world, together. None of these labels mark problems in need of fxing, and yet they do shape lives. In research, if we predetermine people in terms of problems – their stories, and their experiences, written about or written over in terms of the issues they face – then there is a risk that their “lives, and the complex and continuous composing of lives, might also become invisible” (Caine et al., 2018, p. 139). The focus of narrative inquiry on experience in relationship has ofered me a way of sitting with the storied lives of people who have received labels, allowing me to notice how they resist or reimagine the biographies made for them by others. As I will discuss further in chapter 3, this reimagining has helped me trouble the classic focus of ethnographic research on diference, on the lives of “others”, and instead to fnd ways for creativity to spark like a dialectic, “learning how to take our diferences and make them strengths” (Lorde, 2018, p. 19). *** Thom Roberts’ particular experience of autism means that he needs support with some things, like cooking a healthy dinner or writing a grant application. But ‘autism’ is not a word that he identifes with. Neither is disability. And he had never heard of the word ‘neurodiversity’ before I  put it to him, sitting around the kitchen table at Studio A one day, when I was preparing to present on his work at a conference. “Thom, do you know what neurodiversity means?” asked Kylie Madonna. He didn’t engage. “It’s the idea that people have diferent kinds of brains. That your brain is diferent from mine,” she continued, paused. “Thom, do you have a disability?” “Yes, making photocopies.” “Do I have a disability?” “Yes, driving cars.” “Thom, do you know what autism is?” “No, I don’t know.”

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FIGURE 1.3

Thom Roberts, The Magic Photocopier Goes to Cloud Heaven, 2019, acrylic, ink, gouache and pencil on paper, 56cm × 76cm.

Source: Photo courtesy the artist and Studio A

Thom is a big fan of photocopying. This love afair must be kept on a short leash by the staf at Studio A lest Thom photocopies one hundred A3 colour pictures in a single sitting. This limit on his photocopying is one of the only hard boundaries that are placed on his behaviour in the studio. So, his answer is apt. It’s the social model of disability. Certainly, the photocopier plays an important role in his creative process. There are usually photocopied faces and trains and animals piled up all around his desk. They are stapled into books, laminated and painted over, taped, marked up, and crossed out. They form long, marching lines like a centipede. Out of this repetition and reworking come paintings and performances, and pretty much everything else. If I get a chance, I like to go with Thom to the photocopier and watch the look of sheer joy on his face as he adjusts the settings, places the item in question onto the scanner bed, and presses that fnal big button. There’s nothing quite like the smell of freshly photocopied paper – static and ink and electronic dust. Thom is much more familiar, and happy, with the label ‘artist’. I am much more familiar, and happy, with making photocopies alongside him.

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Some things about me

I spent the better part of an honours year in psychology conducting a perceptual experiment, measuring the reaction times of participants as they compared 3D shapes in various degrees of rotation. What drove me onwards wasn’t the science so much as an idea – that this science of the mind might help unveil the human experience of vision. What is it like to see? What is it like to parse a visual feld that is composed of light bouncing of objects and onto our retinas? I quickly realized that my meagre experiments couldn’t answer the ‘what is it like’ question. They could only reject or confrm the null hypothesis. They could only add one tiny piece to the puzzle of how – how do we see? I’ve slowly realized that this question, ‘what is it like’, is most likely impossible to answer, but it is somewhere deep in many of us who strive – scientists, artists, all those living an examined life – to understand and communicate our curiosity about the living world and the consciousness of others in it. What is it like? Perhaps the simpler question to answer is ‘how’. *** I am a maker. I  make collage, amongst other things. I  am still learning to claim the label of ‘artist’. Often, I make art with others. We play together with images, fnding connections between colours and shapes and the stories they hold, however loosely. In John Dewey’s (1934) book Art as Experience he writes of the expressive role of art, noting that “communication is not announcing things . . . Communication is the process of creating participation, of making common what had been isolated and singular . . . the conveyance of meaning gives body and defniteness to the experience of the one who utters as well as to that of those who listen” (Dewey, 1934, p. 2). I don’t fnd that the art I make, often with others, is particularly expressive. Or, the expression happens in a way that doesn’t announce, but still manages to share. A line that trembles. A hand that turns into a head. Giving form to a body, or body to a form. *** My brother-in-law Lloyd is a great knitter, and dancer, and maker of teas. For a few years, I took Lloyd to a community choir called The Daydream Believers, where we sang – mostly out of time and tune – classic crooners to the accompaniment of an electric keyboard. Lloyd has Down syndrome. Sometimes this makes things difcult for him, and for us, his family. For example, it’s hard to fnd out the full story. Sometimes, he will “shut down”, not talk, close of. Sometimes, he seems sad – don’t we all? Words are difcult. But when we sit down together at a table every now and then, with paper and pencils and paint and things to cut and stick, words come softly and slowly. Or, we sit in

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silence. And that’s OK too. And maybe there’s no story. Maybe it’s just small snippets from a day. Lunch. A song. That fsh on the page. What is it like? At some point, I began going with Lloyd to the art museum to take part in programmes there. He loved them. He made things, once a month, looking out at the harbour. He began to lead groups in knitting workshops. He was invited to speak at a big fundraiser for the programme he participated in. He prepared a speech to present alongside one of the artisteducators. On stage, he froze. He didn’t speak. But after the words had been said, Daydream Believer played over the sound system and Lloyd did a wonderful dance, hips swinging, polished black shoes scufing deftly across the podium. In that dance, I could glimpse all his love, all his yearning – for a girlfriend, for a car, for a diferent job, for the words to tell it all to others. There was a standing ovation. Then, there was an auction of something in the corner of the room in a glass vitrine, something expensive and crystal. Afterward, a woman came up to me, a little bit wobbly. “What does he have?” she wanted to know. When we got home Lloyd’s mother, my mother-in-law, pointed out that his cufs were unbuttoned. I  should have noticed. I  should have buttoned them up. *** I’m not sure whether I’m “neurodivergent”. I have seen my fair share of therapists. I have a diagnosis written down somewhere: Generalized Anxiety Disorder, Major Depressive Episodes. I take medication. I was not sure whether to disclose this, or whether to claim it as lived disability. I do think it is relevant to the way I have written this thing. My anxiety was always there, through all the time I  spent trying to pay attention. The thing about my anxiety is that it makes me always distracted, always trying to stave of the feeling of dread at the next big bad event on the horizon, or the thing left undone. The heart-race-clenched-fst feeling of never having things “under control”. So, immersing myself in the chaotic unknowns of a place like Studio A was hard. All this to say that trying to pay attention – mindfully looking, listening, and noticing in “the feld” – was (is) hard for me. But in some ways, it brought its own therapy. When I  allowed myself to simply sit with people, when I didn’t always presuppose the outcome of my time, when I did manage to fnd moments of presence in the present, the anxiety abated. All this to say that maybe the way this writing has played out refects the state of my mind – fractured, constantly pulled from one thing to the next, holding on to small moments of relief and meaning.7 Perhaps that is also why I am so drawn to collage. I see this writing as a collage of words. So, maybe I am neurodivergent. Certainly, my anxiety has been with me throughout all this, and that means something. ***

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All the time that I was birthing this book I was also parenting, intensely. When I began, Louis was one year old. Thom Roberts has given him the name “Gravity”. Lou is certainly a force of nature. Edie was born three years later. Thom calls her “Heaven”. He gave her this name when she was still in my womb. She is biblical in an Old Testament kind of way. In Thom’s nomenclature, Gravity and Heaven’s father is “Planet Earth”. My styles as a mother and as a scholar hold some similarities. In both practices, I operate intuitively. In both practices, my attention is held and then buffeted, and I am forced to question myself constantly. Like parenting, to study is an act of care. Bringing something new into the world entails unequal parts duty, privilege, discipline, and joy. This book will proceed via fragments of the real8 – things I have read, seen, heard, and felt – all relevant to my inquiry into the work of two organizations operating at the nexus of art and disability, and the people involved with them. I have intentionally interspersed primary and secondary “data”, academic and lived knowledge, throughout each chapter. Over the following pages, there will be many people, objects, and ideas. I hope to share the wonder I have felt in coming to know them. Notes 1 Accessed 2 March 2018, and 21 June 2022, and many other times in between. 2 Accessed October 2021. 3 Lynne Cooke has suggested the term ‘outlier’ instead of ‘self-taught’ or ‘outsider’ to position the work of an artist who “has gained recognition by means at variance with expected channels and protocols . . .. [The term] sidesteps questions of ‘inside’ versus ‘outside’ in favour of distances nearer and farther from an aggregate so that being at variance with the norm can be a position of strength: a place negotiated or sought out rather than predetermined and fxed” (Cooke, 2018, p. 4). Cooke curated the frst major exhibition of Scott’s work in the United States, Bound and Unbound, at the Brooklyn Museum. It was accompanied by a monograph (Morris & Higgs, 2014). 4 The word ‘stigma’ comes from the Greek, to prick, puncture, or tattoo, via the Latin, to mark or brand. In ancient Greece, slaves, criminals, and traitors were burnt or cut as a visible sign of their infamy or subjection. Gofman’s classic defnition of stigma in contemporary society is “an attribute that is deeply discrediting,” “a spoiled identity” (Gofman, 1968, p.  3). Link and Phelan (2001) elaborate and expand: stigma is a result of the operation of power in society. It can be understood in terms of the co-occurrence of four processes: labelling diferences, associating these diferences with negative attributes, separating “us” from “them”, status loss, and discrimination. Intellectual disability is still a highly stigmatized “attribute” (Scior et al., 2020; Scior & Werner, 2016). 5 There are many other terms that are used worldwide, often interchangeably, with ‘intellectual disability’, including ‘learning disability’ in the UK, ‘developmental disability’, and ‘cognitive disability’. These sometimes carry with them their own nuanced meanings. For example, ‘cognitive disability’ is a broader term that can encompass the experience of dementias and autism. I  use ‘intellectual disability’

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here because it is the term Studio A has used to describe its members, and because it is consistently used in international contexts. 6 Binet, one of the founders of the Intelligence Quotient, did not think that his test was measuring a fxed or innate construct. Citing Trent (1994), Kliewer and colleagues (2015) argue that Binet’s death in 1911 “efectively silenced what might have been an infuential and progressive psychological discourse on intellectual fuidity, malleability, and resilience” (p.  6). Instead, IQ came to be validated as an objective measure of some static property – “intelligence”. 7 In Ordinary Afects, Stewart (2007) writes of her own prose: “Attention is distracted, pulled away from itself. But the constant pulling also makes it wakeful, ‘at attention.’ Confused but attuned” (p. 10). 8 Without wanting to delve too deeply into philosophy, I will simply borrow from Thompson (2007), who wrote that “grasped phenomenologically . . . reality is that which is disclosed to us as real, whether in everyday perception or scientifc investigation, and such disclosure is an achievement of consciousness” (p. 21).

References Adams, J. (2015, October). FlOb Holotype – the frst piece of writing expressing the ideas of Flow Observatorium calling for change in the arts landscape. Museum for Object Research. Retrieved from www.museumforobjectresearch.com/jon-adams/ Adams, K., & Shaw, P. (2012). Anthology: Project artworks 1997–2012. Hastings: Project Artworks. Bateson, G. (1987). Steps to an ecology of mind: Collected essays in anthropology, psychiatry, evolution, and epistemology. Northvale, NJ; London: Jason Aronson Inc. Caine, V., Steeves, P., Clandinin, D. J., Estefan, A., Huber, J., & Murphy, M. S. (2018). Social justice practice: A narrative inquiry perspective. Education, Citizenship and Social Justice, 13(2), 133–143. Doi:10.1177/1746197917710235 Cooke, L. (2018). Outliers and American vanguard art. Chicago, IL: University of Chicago Press. Dewey, J. (1934). Art as experience. New York: Minton, Balch & Co. Fraser, B. (2018). Cognitive disability aesthetics: Visual culture, disability representations, and the (in)visibility of cognitive diference. Toronto: University of Toronto Press. Friedner, M.,  & Weingarten, K. (2016). Disability as diversity: A  new biopolitics. Retrieved from http://somatosphere.net Gardner, H. (2004). Frames of mind: The theory of multiple intelligences. New York: Basic Books. Gofman, E. (1968). Stigma: Notes on the management of spoiled identity. Harmondsworth: Penguin. Hamilton, A. (2009). Making not knowing. In M. J. Jacob & J. Baas (Eds.), Learning mind: Experience into art. Chicago, LA: School of the Art Institute of Chicago, University of California Press. Hutchins, E. (1995). Cognition in the wild. Cambridge, MA: MIT Press. Hutchins, E. (2010). Cognitive ecology. Topics in Cognitive Science, 2(4), 705–715. Doi:10.1111/j.1756-8765.2010.01089.x Kittay, E. F. (2020). Care and disability: Friends or foes. In A. Cureton & D. Wasserman (Eds.), The Oxford handbook of philosophy and disability. Oxford: Oxford University Press.

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Kittay, E. F., & Carlson, L. (2010). [Ebook UNSW] Cognitive disability and its challenge to moral philosophy. Malden, MA: Wiley-Blackwell. Kliewer, C., Biklen, D.,  & Petersen, A. (2015). At the end of intellectual disability. Harvard Educational Review, 85(1), 1–28, 141–142. Kuppers, P. (2016). Diversity: Disability. Art Journal, 75(1), 93–97. Doi:10.1080/0 0043249.2016.1171549 Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27(1), 363–385. Lorde, A. (2018). The master’s tools will never dismantle the master’s house. Great Britain: Penguin Classics. MacGregor, J. M. (1999). Metamorphosis: The fber art of Judith Scott. Oakland, CA: Creative Growth Art Center. Manning, E. (2016). The minor gesture. Durham, NC: Duke University Press. Morris, C.,  & Higgs, M. (Eds.). (2014). Judith Scott: Bound  & unbound. Munich: DelMonico Books. Oliver, M. (1996). Understanding disability: From theory to practice. New York: St. Martin’s Press. Scior, K., Hamid, A., Hastings, R., Werner, S., Belton, C., Laniyan, A., Patel, M., & Kett, M. (2020). Intellectual disability stigma and initiatives to challenge it and promote inclusion around the globe. Journal of Policy and Practice in Intellectual Disabilities, 17(2), 165–175. Doi:10.1111/jppi.12330 Scior, K.,  & Werner, S. (Eds.). (2016). Intellectual disability and stigma. London: Palgrave Macmillan. Sedgwick, E. K. (2003). Touching feeling: Afect, pedagogy, performativity. Durham, NC: Duke University Press. Shakespeare, T., & Watson, N. (2001). The social model of disability: An outdated ideology? In Exploring theories and expanding methodologies: Where we are and where we need to go (pp. 9–28). Leeds: Emerald Group Publishing Limited. Sinason, V. (2010). Mental handicap and the human condition: An analytic approach to intellectual disability. London: Free Association Books. Singer, J. (2016). NeuroDiversity: The birth of an idea. Sydney: Judy Singer. Sontag, S. (1966/1990). Against interpretation, and other essays. New York: Anchor Books. Stewart, K. (2007). Ordinary afects. Durham, NC: Duke University Press. Thompson, E. (2007). Mind in life: Biology, phenomenology, and the sciences of mind. Cambridge: Cambridge University Press. Trent, J. W. (1994). Inventing the feeble mind: A history of mental retardation in the United States. Berkeley, CA: University of California Press.

2 STUDIOS

Studio A again

At Studio A, a small group of artists with intellectual disability are being supported to pursue their careers . . . No, wait . . . At Studio A, a small group of neurodiverse artists, with and without intellectual disability, are being supported to pursue their careers. Here we go: At Studio A, a small group of neurodiverse people, with and without intellectual disability, are being supported to make things, and share what they make with others. Studio A  is the ofspring of a larger organization called Studio Artes. ‘Artes’ is an acronym. It stands for Arts, Recreation, Training, Employment, Skills. Studio Artes was founded by an art teacher and an occupational therapist in a Hornsby garage in 2000 and has since grown to over 160 members. Like its ‘daughter’ Studio A, it is a disability service registered with the Australian National Disability Insurance Scheme. It provides a range of programmes to its members, including ones in visual and performing arts. Studio A  broke away from Studio Artes, setting up in a separate studio in 2017 to focus on the professional development of its members as contemporary artists. It is not a recreational programme. It sits in a funny place between a service and a workplace for its artists. It provides ‘vocational training’ – one of the barriers that people with intellectual disabilities face when accessing the mainstream art world.1 Perhaps most importantly, the artists are actively promoted as artists. They are shown how to claim that name and provided opportunities to do this in whatever way they may like.

DOI: 10.4324/9781003466703-2

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Project Art Works beginnings

Project Art Works began when two artists, Kate Adams and Jonathan Cole, were sharing a studio and discussing ways of supporting young people with intellectual disability, even those with the most complex needs, to make art on their own terms. Kate and Jonathan’s frst experiment, Project Paul, began in 1996 during two ten-day residencies in schools for children with severe learning difculties. Kate recounts, “It aimed at a kind of record of engagement through mark making rather than a way of intentionally making art and

FIGURE 2.1

Anonymous, Workshop, polaroid.

Source: Photo courtesy Project Art Works

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yet many of the images made have huge vitality, power and aesthetic balance” (Adams & Shaw, 2012, p. 16). In an early video from that time, Jonathan is working with a young boy in a school hall on a blue drop cloth. They have a square board between them. Green paint, then white, then blue. The boy uses a roller over the square board and then rollers up Jonathan’s arm. The paint is all over their hands, slurping onto the ground and scraped with the board across the drop cloth. The paint is dripping through their hands, held up to their faces. By the end, Jonathan’s face is blue. The boy’s face is green. Some of those early projects in schools resulted in concrete and permanent interventions into the spaces. For example, they created glazed tiles that ended up in a hydrotherapy pool. Etching copper plates became part of the entry wall of another building. But in a way that was all incidental. These days, much of their work takes place in their dedicated studio spaces in Hastings, UK. As an activist organization, they also extend their focus outwards, with the goal of placing neurodivergent experience at the centre of cultural life.2 I write about Project Art Works here, and throughout this book as a kind of interlude within my longer writing about Studio A. The practices developed over many years at Project Art Works have provided me with a way of understanding what is happening at Studio A, and vice versa. Certainly, coming to know the Project Art Works methodology has helped build my own approach to this book in particular, the recurring thread in their practice of not knowing but trying to fnd out. I will discuss this in more detail in Chapter 4. A tidy studio

“I like visual clarity in my studio,” Tony Colley told me as I arrived at Project Art Works at 10am on a Wednesday morning, in April 2019. He and two other artists were setting up for the day. Tony, Kate Adams’ husband, had been facilitating the Wednesday studio at Project Art Works for over ten years. “I like a tidy studio,” he said. “I am a tidy studio.” He was brushing white paint onto the wall, where faint slashes of other colours were tarring the surface. “I want nothing on the walls or tables, to keep the focus on the work in progress.” It’s something Tony does in his own practice, he told me, but it also works well for artists with intellectual disability. But it means a bit of preparation to reclaim this space from the marks of previous activity within it: the splatters and splashes and stains. Tony was focusing on the wall because that is where, throughout the day, he would pin works in progress and photograph them for the archive, an evolving

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entity that holds records not only of the fnished works – the paintings, drawings, sculptures, and more, made during a plethora of weekly sessions – but also the how, the progress, the process. He pointed out the lighting – he had turned the spotlights coming from the ceiling onto the walls so that they bounced the light, making it softer and more ambient, difuse. The environment is important, and Tony pays careful attention to it. “Kate and I have a son with complex needs,” Tony added. “So, we understand the importance of the environment. . . . Have you seen the flms where Kate has worked with him?” he asked, but before I could answer he was of, welcoming one of the artists into the studio. Each artist has their own place in the studio on a Wednesday with Tony. Charlotte Stephens (Charlie) sits in the furthest corner of the studio, away from distraction. The Project Art Works team has built a cross-rail to support her hand as she is painting. Her hand was reconstructed as a child and she has difculties with fne motor coordination and control, so this is one way of shaping the environment of the studio to allow her natural abilities to shine.3 Charlie has been coming to Project Art Works for well over a decade. When I visited, she was working on a painting of boat houses in the snow. “Before, I had trouble with anger,” she told me, “I was always angry. But now I’m not so much anymore.” “Why do you think that is?” I asked. “Because of painting. I’m painting every Wednesday. It feels good.” “Do you make art other days?” “Sometimes I paint at the day program, but it’s not really art. It’s not good.” An artistic family

Once, I asked the artist Skye Saxon, “What does being a part of Studio A mean to you?” “It’s like being in an artistic family,” she told me, “Where even if you don’t always have your ups, and you have your downs, you can always fnd an up, even on your down days. And even in your darkest hour, you can always fnd a light.” Working space

Both Studio A and Project Art Works could be, and have been, described as “supported studios.” Supported studios exist all over the world, in various guises and under various names.4 These organizations tend to share a common approach – artists and makers with disability are provided with working space, high quality materials, and assistance from experienced staf who have training in art. The art historian Colin Rhodes (2008) unsettled the association

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between supported studios and certain narratives of Outsider Art, particularly the ideal of the lone, self-made creator. In his article ‘An Other Academy’, he describes the supported studio as “incubator for an emergent art” (p. 131; see also Rhodes, 2022), where sensitive facilitation from arts practitioners within a studio environment has helped produce a league of artists whose work may never have existed otherwise. Their practices deserve to be visible and valued beyond the limiting discourses of Outsider Art. It is no coincidence that the frst supported studios – like Creative Growth in Oakland, California, Action Space in London, UK, and Arts Project Australia, in Melbourne – emerged in the 1960s and 1970s. This was a time of deinstitutionalization, when many long-stay hospitals and asylums were closed, as models of care turned towards reintegration within communities.5 Supported studios all over the world ofer a safe space, a place of belonging, distinct from but connected to ‘mainstream’ communities (Hall, 2013; Knutes Nyqvist & Stjerna, 2017). Crucially, the creative work enacted in these places can resist other forms of labour and care that people with intellectual disability are often expected to participate in. The creative work made in these places can even earn their makers money. VBs and photocopies

Most of us want to buy things that cost money. We work so that we can do that. This is the nature of the economic system we live in. Thom Roberts wants things that cost money. He wants to be able to make a hundred photocopies every day. He wants to go to exhibition openings, drink beer, and catch a taxi home. But the Australian National Disability Insurance Scheme won’t pay for beers or photocopies. And neither will his mum. The only way he can pay for those things is using the money that he makes from his art. When somebody says they want to buy Thom’s artwork he tells them “$100 mate.” But some things are not for sale. The laminated photocopies that Thom carries with him wherever he goes, in a tote bag slung over his shoulder, ft into this group of objects. Once, when a woman wanted to buy them at an art event, Thom took the microphone and began to sing, The Doors “Riders on the Storm” playing in the background: “These are not for sale.” Bathroom Industries

Before Thom Roberts worked at Studio A, before he worked at Studio Artes, Thom Roberts worked at Chatswood Industries. At Chatswood Industries, Thom mowed lawns. He quite liked that work, but after a while they said, “Thom your job has fnished. No more.” And then he went to a new place that he calls Bathroom Industries, his name for what is otherwise known as Ottenham Industries. Now his job was to put the headphones people got given on

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Qantas aeroplanes into little plastic bags. On other days he was asked to count plungers or nails or screws and sort them into piles. He was paid about $3 an hour. He didn’t like this work much and spent a lot of time trying to avoid it. There’s one story from his days of Industry that I’ve heard many times now and in many diferent forms. I’ve heard Thom recount it with his adopted mother in the small brick home they once shared. I’ve heard him recount it with Kylie Madonna (a.k.a. Gabrielle Mordy) around the Studio A  kitchen

FIGURE 2.2

Thom Roberts, Kenny Police Cop, 2021, acrylic on paper. Commissioned by The National Justice Project for Law Hack 2021.

Source: Photo courtesy the artist and Studio A

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table. I’ve heard him recount it on video in a work called Rush Hour at Cloud Heaven (2017) that he made with his long-time collaborator Angelmouse (a.k.a. Harriet Body). “I was at the station when the fuzz caught me red-handed.” It is a riveting opener. This is how I frst heard the story from Thom, in person, at Studio A. “Oh, Thom,” Kylie laughed when he said it unexpectedly while we were talking about something unrelated, except for the mention of trains. “This is Thom’s favourite story. Did you want to tell Chloe this story, Thom?” So, Thom told the story of a morning spent travelling on Sydney trains, from station to station, avoiding going to work. At the beginning of the day, his bag was stolen. At the end of his wandering journey, the police stopped him at Town Hall, which is Christmas Station. In the telling, Thom used the diferent names he has for the train stations. In the telling, Kylie intervened to explain bits and pieces that might not make sense. In Rush Hour at Cloud Heaven, this process of explanation and telling becomes part of the art. It’s a three-channel video work. On one screen, “Thom Tells Angelmouse.” They are cut-out faces sitting side by side on a train seat. On another screen, “Angelmouse Explains” in closed caption text overlaid across a stop frame animation of a line drawing of a body with a collaged cat head.

FIGURE 2.3

Thom and Angelmouse, Rush Hour at Cloud Heaven, 2017, flm still from three-channel video installation.

Source: Photo courtesy the artists and Studio A

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On one screen, Thom tells Angelmouse that after his bag got stolen, he went all the way from Bert and Ernie, through all the stations. On another screen, Angelmouse explains, “Thom has renamed all of Sydney’s train stations. Cheltenham Station is Bert and Ernie.” On a third screen, diferent train faces race up and down railway tracks. Thom tells Angelmouse all the diferent stations he went through, like Blue Cow, Shanghai, Christmas, Easter, and Cockroach. He also went back and forth across the Harbour Fridge. Angelmouse explains that the diferent trains are diferent people in Thom’s life. And that Thom has also attributed a character to each train: Kenny Mathews the purple Tangara is a purple face. Thom Roberts the green country link express train is a green frog. Angelmouse the red rattler is a red bear. Mrs Banks the yellow train is a yellow bee. Benji the black millennium train is a silver metal robot. Katie Snow White Pinocchio the fake train (freight train) is a brown grizzly monster. And Freddy the blue silver train is a silver blue bird. At about which point Thom tells Angelmouse, “that’s when the fuzz caught me . . . ‘you’re in big trouble now Thom cat,’ ” they told him, “ ‘now you better get on this face train and go straight to work please. And do not muck around on the station.’ ” *** “So the fuzz told you to go to work, and did you go to work?” I asked Thom, back in the studio. “No. I let nine silver trains go and waited for this one,” he pointed to a laminated picture of a train in front of him on the Studio A kitchen table. “The Tangara,” Kylie Madonna explained. “And I fnally caught it to Bathroom Town and walked up and they said: ‘by morning tea.’ ” “So, you made it to work by morning tea?” I asked. “No. And they said, ‘do you know you’re going to lose your job here?’ ” “But you were happy about that, weren’t you, Thommy?” Kylie Madonna asked. “No.” “Did you want the job?” “Yes. I wanted to do the lawn mowing job.” “But not the headphones?” “No.” “But then you got to go to Studio Artes didn’t you?” “Yes, after that I moved to you guys.” Dinosaur Town

I caught a millennium train from Shanghai (Central station) to Dinosaur Town (Hornsby station), then walked beside the tracks out to Studio Artes,

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up the stairs and frst left. Knock, knock. Kermit (a.k.a. Christopher Haysom)6 let me in to a group photography session he was facilitating. They were taking multiple exposures of people’s faces in the dark. I sat down and watched. Lights of. Lights fashed on. Camera shutter clicked. Lights of. I felt a hand on my shoulder, then on my face, the hand was feeling all over my face and I quite liked it but knew I should pull away. Lights on. It was an older woman who acknowledged what she had done with a sheepish smile. Everyone was talking about a Studio Artes performance that had happened on Friday night. The woman asked me, “Do you think I’m going to be a star in a TV commercial now? Will that be my career?” “I don’t know,” I answered, “I didn’t see your performance.” “But do you think they will make me a star in a TV commercial? My career?” “I don’t know, maybe,” I said. “Yes, if you want to,” I fnally agreed after she asked me six times or so. Meanwhile, on a whiteboard to the side of the camera, Thom Roberts had drawn one body with fve heads – sad, nervous, angry, thinking, happy. Meanwhile, Kermit had used multiple exposures to make one body with fve of his heads. Thom was keen to get on to his pictures. “Can we do pictures now?” he asked. Kermit explained that Thom wants to get to his free time where he looks stuf up on the computer and prints it of. He usually does that for a while until he has used up too many pages. Then, he’ll look up videos of trains. “I see this as Thom’s research time,” Kermit told me. Katherine, the leader of the visual art programme, whom I spoke to in the afternoon, described it as Thom’s conceptual time. “There’s only one exhibition a year here,” she said, “so as long as he makes one physical output a year here that’s fne by me.” Kermit continued, “it’s kind of like Thom gets time to just play when he is here.” *** Thom’s name for Studio Artes is ‘woodworks shop’. His name for Studio A is ‘toy shop’. *** I joined Thom at a table for lunch. It quickly became an installation. Already, when I arrived, photocopied black and white pictures of a boy were arranged in a row, faces covered so you could just see the coifed hair – a cow’s body, Thom told me. Three coifed cow bodies and then a kitten on top. These sat to the left of Thom’s cheese and tomato sandwich on white bread. At some point, Thom made his coifed crown cow-bodies into a plane, with brrrm brrrming sounds, and moved it frst fat around the table, and then around the room. Everything becomes art, becomes an installation, with Thom.

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Next, he appropriated someone’s leftover chip packet into his table-top arrangement. After lunch, Thom was in the visual art room. Marcy (a.k.a. Sue) was there too. She is one of the co-founders of Studio Artes. She no longer had an ofcial role, but on Thursdays would still volunteer in the art room. On this particular Thursday, we sat together, Thom, Marcy, and I, in a corner of Studio Artes near the window looking out onto the train line. Every now and then one went past, and that was quite exciting. First, Thom traced trains. He was tracing a silver Freddy. “Oh Fred, you make me wag,” he said as he drew, and, “Holy Moly, what hard work this is.” I asked Thom lots of questions while he was drawing. “Why do you like trains?” “I like counting trains.” “Do you like trains or buildings better?” “I like both.” “What was it like when you frst came to Studio Artes?” That got him going. Thom began to embark on The Story. “That was when the fuzz got me. I left my bag at the station. . . . ” Because he liked mowing lawns but not doing those Qantas headphones. So, he turned up late and then ended up here. I asked Marcy lots of questions too. She told me that when Thom frst came to Studio Artes, he was very nervous. “He didn’t want anyone to touch him,” Marcy told me. “He didn’t want any direction, and at that stage, he was washing his hands a lot, until they bled, which was a bit of a problem.” As Marcy spoke, she often referred to herself in the third person – as Marcy. She told me about when Thom frst called himself Thom, instead of Robert. Marcy joked that he should call himself Thom Roberts, like the Australian landscape painter. He liked that. It stuck. And then Sue became Marcy, and other people began to collect new, Thom names. It was almost as though he had to create separate people, separate characters – his own included – to be able to communicate. A woman called Sandra, whom Thom calls Upsy Daisy, worked with Thom back then. She helped him to stop pulling his fngernails out. She helped him to be OK with other people touching him. She gave him massages. She helped him to read. She made him green spaghetti, and he brought her Kit Kats and little cakes and jam rolls and biscuits. She taught him how to use a sewing machine. They made wonderful big circles out of cloth that were the trains and train tracks of Sydney, all connected. And then Thom started writing poetry and they nearly all started of with Dear Upsy Daisy or Dear Daisy Sandra or Dear Sandra Blue or Dear Daisy Blue. Beside Marcy and me, Thom began to sing, “Upsy Daisy saw lots of blue dollies on these railway tracks.”

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Marcy told me that Upsy Daisy asked Thom to write his poems letter by letter. She wasn’t a trained teacher, but she was very very clever. She was a trained artist. Marcy was an occupational therapist. In the way she described Thom’s early days at Studio Artes I could easily have read a kind of therapeutic narrative. But I was mostly drawn to the poetry: Upsy Daisy seeing blue dollies on the railway tracks; or Thom going with Upsy Daisy and Marcy out to Broken Hill, a remote town in the far west of New South Wales, on a holiday. They shared a room, which slowly flled with rocks and stones that Thom had collected: an installation in their bedroom. “Until the day we had to leave, then we had to get rid of them all,” Marcy laughed. “That was the trouble.” Another time, Thom didn’t have anything ready for an art exhibition, so they decided to build a circle with a doorway in it. Everything Thom liked went on the inside. All the things he didn’t like went on the outside. He called that his room. Thom Roberts doesn’t like burnt toast, because it reminds him of the time there was a fre in his house and there was a lot of smoke and he was very scared. The smell reminds him of fre and fear.

FIGURE 2.4

Thom Roberts, Kangaroo Town Tunnel, 2018, collage, 25.5cm × 35cm.

Source: Photo courtesy the artist and Studio A

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Thom Roberts does like ballet shoes because he used to go with his sister to her ballet lessons. The smell of the ballet, sweaty feet and all, was something that appealed to him. Thom Roberts also likes green spaghetti, cakes cut in half and neenish tarts. They went on the inside. Thom Roberts also doesn’t like stinky Luna Park, and someone named Max who used to tease him all the time – Scar Max, he calls him. A picture of Luna Park and a drawing of Scar Max went on the outside. That was the start of Thom’s installation art. Marcy told me, “He realised that he could fll a space with things that he liked . . . so that was just great love.” Transformation

Creative self-expression, fulflment, joy, belonging. All of these words have been used to describe the way supported studios make people feel, in the small body of research examining the social contexts of these places (Anderson & Bigby, 2020; Darragh, Ellison, Rillotta, Bellon, & Crocker, 2016; Hall, 2013; Katz, 1994; Knutes Nyqvist & Stjerna, 2017; Ludins-Katz & Katz, 1990; Mordy, 2012; Wexler & Derby, 2015; Yoon, 2020; Yoon, Ellison, & Essl, 2020). It is tempting to highlight a therapeutic narrative, to notice stories of social or personal transformation – and there are many.7 For example, I was very pleased with myself when I captured this conversation with the artist Katrina Brennan during a day spent at Studio A. She was carefully flling in pre-drawn black felt-tip lines on a small square wooden board with brightly coloured Posca pens. Out of the blue, she asked me, “Do you ever fnd it hard to get to sleep . . . sometimes I fnd it hard. But then I think about the grid. I think about the squares in my head. And my pen flling them in.” “Do you mean you think about drawing, like what you are doing now?” “Yes.” “That’s a good idea. I might try that.” “I fnd it so relaxing, it’s like melting in my head, and then I’m not stressed anymore.” It is true that there is a huge, and growing, body of evidence demonstrating the efects that participation in the arts can have on well-being, and all kinds of other “outcomes”.8 It is also true that Thom’s life was changed when he left his job at Bathroom Industries and started his new life as an artist at Studio Artes.9 And that Katrina (whom Thom calls Kayla) travels three hours on public transport to feel that sense of belonging or melting or relaxation that being in the studio provides. And I will introduce other artists whose lives have been transformed. But I don’t want to prioritize this narrative of transformation as the only signifcant lens for understanding these studios and the artists who work there. Rather, art has the potential to transform each and every one of us.

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FIGURE 2.5

Katrina Brennan, Grid and Diamonds, 2018, acrylic on wood, 14.8cm × 14.8cm × 1.9cm each.

Source: Photos courtesy the artist and Studio A

A happening

Once, I was having beers at a Liverpool pub with a small group of Project Art Works staf. One of them began asking me questions about the diferences and similarities between Studio A and Project Art Works. I answered her clumsily. I said something about how Studio A focuses on promoting individual artists, and artist mentors are often invited in to help with this. At Project Art Works, collaborations are central to the whole endeavour. She pushed me, “But what’s the difference between an artist mentor and what someone like Annis does?” She gestured to the woman sitting next to her. I  said something stupid about Annis being more like a carer. Annis was incensed. She told me that she absolutely does not think what she does is caring. “It’s a happening, a socially engaged practice, a collaboration.” We were silent for a moment and sipped on our beers. I fushed hot red. Annis took a deep breath and apologized. The reason she raised her hackles, she said, is that people always tell her “Oh, aren’t you good, you look after people with disabilities.” She sees what she does, what Project Art Works does, as fundamentally more profound. Value

Sometimes, the need to evade stereotypes and preconceptions about the roles of artists and staf might push organizations to invest in a certain model of art – one enmeshed in the market, centred around the profle of the individual maker, and the marketing of their products. In a brief piece on the Creative

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Growth art centre in Frieze, Trainor (2006) grazes the surface of the ethical dilemmas”: When the bubble bursts or the market’s addled attention span evaporates, where will that leave artists who have the most to lose, especially those for whom exposure has equalled a modicum of fnancial security? Are concerns about exploitation, ‘informed consent’ or the possibility of ‘autism chic’ justifed or a kind of reverse condescension? (p. 34) But perhaps I am more concerned about something deeper that is lost when places that are often collective, and underpinned by relationships, buy into art world narratives. In the words of Nika Dubrovksy and David Graeber (2019), the art world is overwhelmingly a place “of heroic individuals, even when it claims to echo the logic of movements and collectives – even when the ostensible aim of those collectives is to annihilate the distinction between art and life.” Everyone is an artist, but only some people can be Artists. Yet it is important to value the art objects made in studios with the dignity and respect they deserve – whether because they are beautiful, because they are good, because they were made with skill or passion, or all the above. Rhodes (2008) argued that a defning characteristic of organizations that support artists with intellectual disability is their “belief in the aesthetic value of the product, not only as personally relevant to the maker, but also as being of intrinsic artistic merit” (p. 131, my italics). This starts with providing the highest quality materials to make with and might end with exhibition or display in contemporary art venues, including public and commercial art galleries. Valuing art objects made by people with disability means valuing their contributions to society and culture. But . . . there is always a but. How might we also value, and pay attention to, the relationships at the heart of these studios? How might we value the many paths that art takes, often alongside or tangential to the products that make their way to a gallery? How might we value the quality of an interaction as much as the product it gives rise to? How might we value, and pay attention to, the interdependence at the heart of all art-making? An ofering to the trains

Kylie Madonna the jaguar bush kangaroo (a.k.a. Gabrielle Mordy) frst encountered Thom Roberts on the platform at Hornsby Station, way back in 2006. Unlike the other commuters, Thom was engaged in a performance for the trains.10 He carefully placed a collection of small sculptures along the edge of the platform, and then stepped back with a smile. An ofering to the trains. As they few by, he waved his arms and yelled “silvery”. Before long, station guards appeared and encouraged him to move on. Kylie, an artist

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FIGURE 2.6

Thom Roberts, A Silvery Side, 2020, acrylic on canvas, 80.8cm × 116cm.

Source: Courtesy the artist and Studio A

herself, studying fne arts and anthropology at university, immediately recognized Thom’s work as a happening – a spontaneous site-specifc piece of performance art. Clearly, the station guards did not. And neither did the other commuters that day, who stared from a distance (Mordy, 2012).11 Back in 2006, Thom would not have called himself an artist. He was simply doing something that he loved. He was simply expressing his deep fascination with trains. But Kylie realized that Thom could beneft from a diferent audience, an audience who might also see the art in Thom’s seemingly unusual actions.12 She has spent the rest of her working life pursuing opportunities for Thom, and the small group of other artists in the Studio A  collective: establishing collaborations, negotiating contracts, and securing commissions to exhibit work in galleries, museums, and other “platforms” across Australia and internationally. But despite all her work framing Studio A for consumption by the art world, which sometimes means its display in white cube galleries, or being handled with white gloves, Kylie Madonna knows for sure that life and art are never separate. This is something most of us know too, somewhere deep down. In other words, art can be everywhere, in everything, and everyone is an artist if we know how to look properly. This matters, art matters. And it matters that Thom Roberts is an artist, with his own particular skills for meaning-making.

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Artists and makers

When I frst became interested in Project Art Works, back in 2018, they had a section of their website that featured diferent “artists and makers”. They ofered both these terms to account for the diferent ways that people might come to their practice in the studio. Some people identify as artists. Others might not. Now, as I write these words, in November 2021, the website simply features “the collective” – no artists, no makers, just neurodiverse people and their work, some with and some without disability. *** Standing in an exhibition of paintings by Siddharth Gadiyar at an art gallery in Brighton, the scale of the work had been the frst thing to hit me: the all-overness of the concentric circles – Siddharth’s mandalas. Then, the texture of the surface: juicy paint and underneath something sharp and angular, the tape that Siddharth places down frst, around and around, marking out the space of the canvas “We don’t have any writing on the walls,” Patricia Finnegan, a staf artist from Project Art Works, told me. “Because the work can do the talking.” In one of the paintings in the back room, I could just make out the words “mummy love, love mummy”. “It’s Sid’s way of communicating,” his mum told me when I met her later. “Because he doesn’t use words.” A journalist from the BBC was in the gallery doing interviews, flm crew in tow. The man was cautious about vocabulary. At one point in the interview, he asked Patricia, “How do you describe people like Sid, who participate in your programs at Project Art Works? I know you don’t call them a patient, or a client. . . .” Patricia didn’t finch, “I see Sid as an artist. We are all artists, although we might make work diferently.” Later, I questioned her more about this. Patricia told me she calls Sid an artist because he is aware that there is an audience for his work: he makes art to be seen.13 Later, the journalist asked her about how she understood the art that Sid had made, and whether it could be a way of understanding what he was thinking. She answered, “I never assume to know exactly what anyone’s thinking, but what I do know is the way that he works. For instance, how he positions himself at the centre of the canvas or paper.” *** “I’m wary of the word artist,” Tony Colley told me, sitting in the Project Art Works studio in Hastings. “It carries so much weight, so much baggage. I wouldn’t call myself an artist.” Yet he sees art-making in all kinds of things. And he wouldn’t call himself a meditator, but when he draws or gardens maybe that’s what he’s doing. “Right now,” he told me, “a lot of my creative energy is being diverted into making a house.” It was a house for his son, Paul. He had been building

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it over the preceding three years, restoring a building. He had spent a lot of time staring at brick walls, or at fooring. Sometimes he would think about the gestalt of it all.

FIGURE 2.7

Siddharth and Susmitha Gadiyar, Phoenix Art Space, 2019.

Source: Photo courtesy the artist and Project Art Works

At Sid’s exhibition in Brighton, his mum was beaming. She told me how happy and calm Sid is at Project Art Works for his few hours a week. “He has behaviours that challenge,” she told me. “Sometimes it can be very difcult. But when he’s in the studio he is so focused. And look what he has made!” I spoke art words to her – I told her how much I loved the movement Sid’s work created, how all-encompassing his mandalas are when you stand in front of them. She nodded, still smiling. “Sid hasn’t seen it yet. He doesn’t know about his own exhibition. We didn’t want him to destroy it. The day we were going to bring him he had a really bad day, so it wasn’t going to work.” Later, I found out that Sid did visit his work before the exhibition ended. He seemed to love it, but no one knew for sure. I am an artist My name is Lisa [Tindall].14 I am an artist. I make paintings and drawings and I have also made quilts and sculptures. My art is a talent. It is also an experience that I can share with other people. I have a passion for art. It helps

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me control my own life and make new friends too. At Studio A I get together with my friends and make things. I love Studio A, they are my family. I sit down and I  draw and paint and I  have to make decisions myself. The staf members help if you need it. I get to sell my work too, and I get to show it to lots of people. When people see my artwork exhibited they see a new side of me. Sometimes, they are shocked. I feel wonderful. Lisa Tindall and Chloe Watfern (2021, p. 1)

FIGURE 2.8

Lisa Tindall, Thom Skulls, 2020, acrylic on canvas board, 41cm × 62cm.

Source: Photo courtesy the artist and Studio A

Woody Tiger

Woody Tiger (a.k.a. Emma Johnston, the principal artist facilitator at Studio A) ended up where she is, in part who she is, because her mum read the classifeds in the local newspaper. She still has the ad, circled in blue pen. “Artists Wanted,” it read. Woody was about to fnish her honours degree in plant and wildlife illustration, with no immediate job prospects in sight. Her mum told her: “You have to call this number because they want an artist and you’re it.” Woody did what a good daughter would do, a good artist, and called the number. It was Studio Artes. She’d never had any experience working with people with disability but had a gut feeling about the job: “I think I can do this.” We sat, Woody, Kylie, and myself, around the kitchen table at Studio A, the women recalling these beginnings for me, fnishing bits and pieces of the story for each other, asking questions.

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Woody went for an interview and thought it went well but was pipped at the post by another candidate who had disability training. They didn’t last. “But I’m still here, eighteen years later,” she laughed. Three months after her initial job interview, she was asked to come in for a trial. She found herself in a little double garage art room flled with hair dryers for drying paint. Woody led art sessions three Fridays in a row. Over by the sink, Thom was drying his painting. Our voices strained over the sound of the hair dryer. He stopped and Woody got up to help him mix a new colour. She returned. Eighteen years ago, someone asked Woody’s group if she should stay on. They all cheered. “I always feel like they hired me,” she said. *** When I frst met Woody Tiger, I asked if she was an artist and if so, what did she make. She told me she thinks of herself as a maker. “I like to make things. I don’t necessarily make the same things; sometimes I’ll make jewellery, other times I’ll paint pictures. At the moment, I’m really into sewing and textiles. I just like to make things.” At Studio A, Woody Tiger helps other people make things. The work she does is intuitive and practical, menial and profound. After a day’s work she

FIGURE 2.9

Thom Roberts’ desk, 2019, including piano keys and a drawing of Woody Tiger.

Source: Photo: Chloe Watfern

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is often drained. She tends to put all her creative energy into other peoples’ creations. On the train home to the central coast, travelling north through bush, over the Hawkesbury River, she just sits back and watches the world go by. The self vanishes

At the end of my Wednesday at Project Art Works people slowly fltered out, collected by support workers or family members. I sat again with Tony at his desk. Patricia moved about the studio packing away easels and moving paint from one place to another. Our conversation moved in circles, as conversations tend to do. Mostly, we spoke about Sid, whose work I had seen the day before. Tony said that he thought of Sid’s paintings as “archetypal in a Jungian sense”, that they tend towards a kind of collective unconscious or centring. They could also, he considered, be understood with the help of gestalt psychology – that tendency of all things to symmetry, to ‘good form’. However you want to explain it, with Jung or the gestalts or anyone else, you can’t deny the fact of the paintings and that they are good. The circle, Tony said, appears across so many diferent cultures. In Zen, it’s called an Enso. Artists practice making a circle in a single stroke. In doing that, they are exposed. But the circle is also a point of stillness, particularly at its centre. “Is Sid still, or calm while he is at the centre of his paintings?” I asked. “He is utterly focused on what he is doing,” Patricia chimed in. “You could call it centred. But I don’t have the reference for what he’s like in the rest of his life.” “So, is that art therapy?” I asked them both. “It is in one sense,” said Patricia. “You’re not striving for art therapy,” said Tony. “That’s incidental. In a sense, it’s not a striving for self-awareness or anything else, the self vanishes.” “Whose self do you mean?” I asked. “The maker, the participant,” said Tony. “But also the facilitator,” Patricia added. “I’ve often felt so absorbed in what I’m doing that I am no longer conscious of myself as a self.” “So, the way I understand what you’re saying is that there is no expectation for the process to be therapeutic?” I asked. “But it’s not a case of high or low expectations,” Tony explained. “It’s having no expectations at all, being open to whatever happens. It’s about letting a situation unfold itself and starting to learn to read the environment, the situation, and the body language. So here in the studio, it’s not that I’m expecting the artists to do an interesting painting. Instead, I’ve just got to know people, some over many, many years.” “In the end, it comes down to being with people,” said Patricia. “It’s nothing more complex than that. Just being with people – not expecting that being with to be anything more than stepping out into the unknown of another person’s consciousness.” But there’s nothing more complex than that.

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FIGURE 2.10

Siddharth Gadiyar, Mandala 7, 2018, paint on paper, 240cm × 240cm.

Source: Photo courtesy the artist and Project Art Works

Being with

Drawing on the work of the philosopher Jean-Luc Nancy (2007), Macpherson and colleagues (2016) use the term ‘being-with’ to describe a kind of wholebody listening that occurs in arts practices where people with and without intellectual disability make together. Nancy compared listening to hearing. The latter is focused on making sense in a symbolic fashion, through language. The former is attuned to that which is beyond or at the edges of language: listening beyond meaning, feeling in relation to each other and the world. The materials of art enable a particular kind of listening, of ‘being-with’, in the studio. The weight of a pencil, the size of a brush, the quality of a medium – ink versus graphite, acrylic versus oil – all have a role in the type of listening that the process of making together afords. Sometimes, an image or object might be created that enables a wider audience to ‘listen’. In this sense, Macpherson and colleagues (2016) write about the production of “meaningful

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artwork” – work that speaks in some way by reaching someone other than its maker, even though it might not be “about” or “of” anything. In fact, they stress the importance of ambiguity, of “unscripted moments of communication” (Fox & Macpherson, 2015, p. 285), where an artwork speaks directly to a viewer. Yet the question remains: who is looking and who is listening? Songs

At Studio A, that steady, chattering silence. Thom chimed in, “green, green, I love green, green is my new favourite colour. Green, I love that green, that’s Thom’s favourite colour.” He sang. He sings. Another artist chimed in, with a diferent tune and song. “I wish we could have your songs inside the paintings somehow,” someone said. A piano

Skye Saxon and I looked out through Studio A’s long windows to diferent gradations of construction sites making a tapestry of the city. There was a low building with a curved roof, its wall facing us had big stripes in two variations of grey. Skye was lost in thought for a moment. “I’m just looking over at those grey panels on that building,” she said, “and the light and shadows streaking across. I’d like to do light projections on a big wall like that . . . Imagine if it was a piano, and you played the keys with your body.” She laughed her high trill of a laugh. “You’d go boing, boing, boing.” Dumb and mute

On a Wednesday at Project Art Works I  sat for much of the day in a chair near a desk near the bookshelves where the bottles of paints were stored and near the sinks where the palettes and brushes were cleaned and stacked. I sat at Tony Colley’s desk, where his computer was plugged into the speakers. We listened to lots of good music: a Sibelius violin concerto, Joni Mitchell, The Magpies. Tony moved back and forth between artists and his desk. Sometimes, when I was at his desk and he was at his desk, we spoke. At one point, we spoke about painting and the nonverbal. “Painting is a dumb language,” Tony said. Charlie was listening: she piped in from her corner, “Dumb?!” Ofended. “I mean it’s mute, it communicates in silence; sometimes in gestures.” I told him that I think I saw one of his artworks in his wife, Kate’s, studio – a graphite drawing of hands. I felt odd, admitting that I’d been snooping. He told me that he is very interested in English sign language. The hands at the bottom of the drawing are the sign for the word ‘messenger’. Visiting

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FIGURE 2.11

In the Realm of Others, De La Warr Pavilion, 2015.

Source: Photo: Anna Arca. Photo courtesy the artists and Project Art Works

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Padua, he had been transfxed by Giotto’s Arena Chapel, and the way gesture and body language are so central to that artist’s language. “They are these standardized gestures that communicate specifc meanings.” Charlie came over to us; Tony shook her hand. “Like the handshake,” he said, “it’s a gesture, and a symbol, a way of communicating.” We all laughed. “Wasn’t it to show that you don’t have a dagger?” I asked. *** In a 2015 essay refecting on Project Art Works’ In the Realm of Others exhibition at De La Warr Pavilion – where they brought the studio and its archive into the gallery with a living exhibition, canvases rolled and stored, visibly, in plywood frames, moveable walls – Tony Colley touches on Japanese Zen painting and abstract expressionism before noting that Hokusai once took a rooster, “dipped its feet in red paint and had it walk across a swath of blue pigment producing, to the delight of his audience, Maple-Leaves on the Tatsuta River” (Colley, 2015, p. 3). He eventually arrives at the work of the Project Art Works makers on display, whose “spontaneity, directness, unselfconsciousness and above all, ‘being in the moment’, the ‘now’ ” (p. 3) make them, in his eyes, belong to the “way” of Zen masters and action painters alike.15 “As for whether it’s art,” he concludes, “I would suspect the question would be as meaningless to them [the makers] as ornithology is to birds.” He is not particularly interested, they are not particularly interested, I am not particularly interested in what art is or whether something is or isn’t art. I am interested in how the art of particular people comes into being, how it is shaped and received. Notes 1 While more than three-quarters of artists have formal training in their art form, there are no clear fgures about the types of training that artists with intellectual disability receive in Australia (Throsby & Petetskaya, 2017). 2 The work of organizations like Studio A, and even Project Art Works, doesn’t ft neatly with the feld of disability arts, which explicitly links disability politics and creative practice through “the development of shared cultural meanings and collective expression of the experience of disability and struggle . . . using art to expose the discrimination and prejudice disabled people face, and to generate group consciousness and solidarity” (Barnes, 2008, p. 15) Also see Kuppers (2014). However, I note similarities with recent curatorial projects that have explicitly attempted to reframe or provoke conversations about disability for audiences in what has been described as an activist practice (Sandell & Dodd, 2010; Soldatic & Johnson, 2019). 3 At Project Art Works, they follow the Person Centred Active Support framework (Beadle-Brown, Hutchinson, & Whelton, 2012). But Tony primarily sees himself as an artistic mentor. He was once a lecturer at an art school. There too, he told

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5 6 7

8

9

10 11

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me, you work with individuals to help them fnd their own style, to help identify what they might want to make, and how. ‘Supported studio’ is a term used in Australia and the UK, while in the United States the term ‘progressive art studios’ is more common. Many organizations operating in a similar way refer to themselves by other terms entirely. For example, Project Art Works describes itself as a collective of neurodiverse artists. For example, see Robert Edgerton’s (1967) The Cloak of Competence, and Sue Estrof’s (1985) Making It Crazy, for fne-grained ethnographic accounts of life after institutionalization. Who, at this time, was working at both Studio A and Studio Artes, before starting full-time at Studio A as Digital Solutions Manager in 2020. Supported studios don’t tend to provide art therapy – most broadly construed as a form of psychotherapy where art is the primary mode of communication yet studios are often framed by, or make claims for, the therapeutic potential of their practices. As the directors of Creative Growth once wrote, “art leads the way . . . We are not art therapists, but something very therapeutic happens in our studio” (Di Maria, 2015). In 1997 the community artist and scholar Francois Matarosso ofered one of the frst systematic accounts of the social impact of participation in the arts (Matarasso, 1997). Through detailed case studies of some 60 projects, including interviews, discussion groups, and questionnaires with over 1,000 participants, he found that arts programs had the potential to enrich social lives, bring people together, empower communities, strengthen a sense of place, and improve health and wellbeing. While all these outcomes can be achieved by other kinds of social programs and policy, he acknowledged the special power of the arts to “help people think critically about and question their experiences and those of others .  .  . with all the excitement, danger, magic, colour, symbolism, feeling, metaphor and creativity that the arts ofer”. He continued, “It is in the act of creativity that empowerment lies, and through sharing creativity that understanding and social inclusiveness are promoted” (Matarasso, 1997 p. 90). For a recent overview, see Fancourt and Finn (2019). Another story of transformation: one of Thom’s frst major public exhibitions was at Callan Park gallery, part of the Sydney College of the Arts, on the former site of the Callan Park Mental Hospital (1885–1994). Colin Rhodes was a professor at the art school and was director of the gallery at the time. He remembered Thom rocking back and forth in a corner on the frst day of installation. When the show fnally opened, no one could shut Thom up. He was front and centre. This and the following paragraph expand upon an article I  wrote for the journal Research and Practice in Intellectual and Developmental Disabilities (Watfern, 2021). Hadley (2014) writes in her book Disability, Public Space Performance and Spectatorship: Unconscious Performers, “As soon as the disabled body enters the public sphere – on the street, in social institutions, in medical institutions or in popular theatre, television, flm or literature – it becomes a spectacle. It becomes the focus of more or less furtive stares as passers-by attempt to make sense of its startling, unruly or strange corporeality. These reactions, and the social relationships, scripts and rules that inform these reactions, cast the disabled body as a source of curiosity, discomfort, stigma or pity. Meetings between social performers, spectators and scripts in day-to-day life thus constitute performative conversations in which people try to create common understandings about the state, status and meaning of bodies” (p. 2). This story of discovery, this ‘discovery narrative’, is a kind of trope in histories of “outsider”/outlier artists. For example, see ‘Find-and-seek: Discovery Narratives,

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Americanization, and Other Tales of Genius in Modern American Folk Art,’ by Jennifer Jane Marshall in Lynne Cooke’s (2018) Outliers and American Vanguard Art. Glenn Barkley (2008) writes in Without Borders: Outsider Art in an Antipodean Context of the relationship between Robert Moore and Bill Payne, as one “of acknowledgment and recognition. . . . It takes the insider to see the work of the outsider for what it is and bring it to our attention” (p. 8). 13 In his essay ‘What is art for? Why does anyone bother to make it?’ in The Creative Growth Book, David Byrne writes: “You may or may not make a living of your work, but you’re an artist if you show your work to someone. Part of the impulse is to interact socially, emotionally, and intellectually. Some of the artists at Creative Growth have that same impulse – their art, like all of it, is a way of saying the unsayable to other people. As someone who makes things myself I understand that impulse” (Di Maria, 2015 p. 20). 14 Lisa ofcially changed her surname from Scott to Tindall in mid-2022. We published together under her previous name, Lisa Scott. We decided to refer to her in this book by her new name. 15 There are similarities here with Cardinal’s description of Outsider Art, as an “art in the purest state of spontaneity, immaculately conceived, innocent of orthodox prescriptions, impervious to infuence and audience alike” (Cardinal, 1972, p. 53). Cardinal’s writing is problematic in many ways, primitivizing and often focused on ‘defcit’ in the same breath as he celebrates the wonders of the art he describes. A  chapter in his book Outsider Art is literally titled ‘In Quest of the Primitive’, in which he writes of “the search for primordial artistic expression, the primitive, indeed the savage qualities that make for art that is not subservient to the cultural norm” (Cardinal, 1972 p. 12). This is problematic language he is using, yes, and part of a tradition of modernist narratives, to quote Lynne Cooke (2018), “which identify, construct, and then appropriate (in acts of “primitivism”) from those it frames as ‘other’ ” (p. 6). But then it’s important not to throw the baby out with the bath water; it’s important not to ignore or downplay the spontaneous, revelatory, or refreshingly honest nature of much of the art made in supported studios. I will discuss this again in Chapters 3 and 8.

References Adams, K., & Shaw, P. (2012). Anthology: Project Artworks 1997–2012. UK: Project Artworks. Anderson, S., & Bigby, C. (2020). Community participation as identity and belonging: A case study of Arts Project Australia. “I am an artist”. Research and Practice in Intellectual and Developmental Disabilities, 1–14. Doi:10.1080/23297018.202 0.1753231 Barkley, G. (2008). Without borders: Outsider art in an antipodean context. Melbourne: Monash University Museum of Art. Barnes, C. (2008). Generating change: Disability culture and art. Behinderung und Dritte Welt (Journal for Disability and International Development), 19, 4–13. Beadle-Brown, J., Hutchinson, A.,  & Whelton, B. (2012). Person-centred active support – increasing choice, promoting independence and reducing challenging behaviour. Journal of Applied Research in Intellectual Disabilities, 25(4), 291–307. Doi:10.1111/j.1468-3148.2011.00666.x Cardinal, C. (1972). Outsider art. Littlehampton: Littlehampton Book Services Ltd. Colley, T. (2015). One way or another. Hastings: Project Art Works.

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Cooke, L. (2018). Outliers and American vanguard art. Chicago, IL: University of Chicago Press. Darragh, J. A., Ellison, C. J., Rillotta, F., Bellon, M., & Crocker, R. (2016). Exploring the impact of an arts-based, day options program for young adults with intellectual disabilities. Research and Practice in Intellectual and Developmental Disabilities, 3(1), 22–31. Doi:10.1080/23297018.2015.1075416 Di Maria, T. (Ed.). (2015). The creative growth book: From the outside to the inside: Artists with disabilities today. Milan: 5 Continents. Dubrovsky, N.,  & Graeber, D. (2019, September). Another art world, part 1: Art communism and artifcial scarcity. E-fux Journal, (102). Retrieved from www. e-fux.com/journal/102/284624/another-art-world-part-1-art-communism-andartifcial-scarcity/ Edgerton, R. (1967). The cloak of competence: Stigma in the lives of the mentally retarded. Berkeley, CA: University of California Press. Estrof, S. (1985). Making it crazy: An ethnography of psychiatric clients in an American community. Berkeley, CA: University of California Press. Fancourt, D., & Finn, S. (2019). What is the evidence on the role of the arts in improving health and well-being? A scoping review. Copenhagen: World Health Organization Regional Ofce for Europe (Health Evidence Network synthesis report 67). Fox, A., & Macpherson, H. (2015). Inclusive arts practice and research: A critical manifesto. London: Routledge. Hadley, B. (2014) Disability, public space performance and spectatorship: Unconscious performers. New York: Springer. Hall, E. (2013). Making and gifting belonging: Creative arts and people with learning disabilities. Environment and Planning A, 45(2), 244–262. Doi:10.1068/a44629 Katz, E. (1994). The National Institute of Art and Disabilities: An art center for adults with developmental disabilities. Mental Retardation, 32(2). Knutes Nyqvist, H., & Stjerna, M.-L. (2017). Artistry and disability – Doing art for real? Afordances at a day activity centre with an artistic profle. Disability & Society, 32(7), 966–985. Doi:10.1080/09687599.2017.1337563 Kuppers, P. (2014). Studying disability arts and culture: An introduction. New York: Palgrave Macmillan. Ludins-Katz, F.,  & Katz, E. (1990). Art  & disabilities: Establishing the creative art center for people with disabilities. Cambridge, MA: Brookline Books. Macpherson, H., Fox, A., Street, S., Cull, J., Jenner, T., Lake, D., Lake, M.,  & Hart, S. (2016). Listening space: Lessons from artists with and without learning disabilities. Environment and Planning D: Society and Space, 34(2), 371–389. Doi:10.1177/0263775815613093 Marshall, J. (2018). Find-and-seek: Discovery narratives, Americanization, and other tales of genius in modern American folk art. In L. Cooke (Ed.), Outliers and American vanguard art. Chicago, IL: University of Chicago Press. Matarasso, F. (1997). Use or ornament?: The social impact of participation in the arts. Stroud: Comedia. Mordy, G. (2012). Outsiders collaborating? How creative relationships at Studio ARTES are opening doors for artists with intellectual disabilities. Paper presented at the Collaboration in Experimental Design Research Symposium, University of New South Wales. Nancy, J.-L. (2007). Listening. New York: Fordham University Press.

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Rhodes, C. (2008). An other academy: Creative workshops for artists with intellectual disabilities. The International Journal of the Arts in Society, 3(1), 129–134. Rhodes, C. (2022). Outsider art: Spontaneous alternatives. London: Thames & Hudson. Sandell, R., & Dodd, J. (2010). Activist practice. In R. Sandell, J. Dodd, & R. GarlandThomson (Eds.), Re-presenting disability: Activism and agency in the museum. London; New York: Routledge. Soldatic, K., & Johnson, K. (2019). Madhouse: Performance artists with learning disabilities sharing the history of institutions. In Global perspectives on disability activism and advocacy: Our way. Abingdon; New York: Routledge. Thom and Angelmouse (2017). Rush hour at cloud heaven. Sydney, AU: The Big Anxiety Festival. Throsby, D., & Petetskaya, K. (2017). Making art work: An economic study of professional artists in Australia. Retrieved from www.australiacouncil.gov.au/workspace/ uploads/fles/making-art-work-throsby-report-5a05106d0bb69.pdf Trainor, J. (2006). Experimental art. Frieze: Contemporary Art and Culture, (101), 33–34. Watfern, C. (2021). “Thom Roberts is an artist and a country express train”. Commentary on “Community participation as identity and belonging: A case study of Arts Project Australia. “I am an artist”” (Anderson & Bigby, 2020). Research and Practice in Intellectual and Developmental Disabilities, 1–6. Doi:10.1080/232970 18.2021.1899847 Wexler, A., & Derby, J. (2015). Art in institutions: The emergence of (disabled) outsiders. Studies in Art Education, 56(2), 127–141. Doi:10.1080/00393541.2015. 11518956 Yoon, J. H. (2020). Professional career development in the arts management of supported studios in Australia. The Journal of Arts Management, Law, and Society, 1–19. Doi:10.1080/10632921.2020.1851840 Yoon, J. H., Ellison, C., & Essl, P. (2020). Shifting the perspective from ‘incapable’ to ‘capable’ for artists with cognitive disability; case studies in Australia and South Korea. Disability & Society, 1–25. Doi:10.1080/09687599.2020.1751079

3 WRITING BESIDE

Should art speak for itself?

Once I spoke on the phone to Colin Rhodes. He is the author of plenty of books on Outsider Art, and artists who might fall into that category. In a text about supported studios, he notes that the vocation of artist often involves more than just making; it involves engaging in a critical dialogue about art (Rhodes, 2008). This is a skill that is taught in the higher degrees now – par for the course for most professional artists. But what happens, he asks, “if you are committed to the vocation of artist, but can’t easily engage, or engage at all, in that system of discourse in normative ways” (p. 129)? He argues that this is often the case for artists with intellectual disability, who, as a result, end up “locked in a discourse of outsider art” (p. 133) – one that mythologizes spontaneous, extra-cultural creativity. At the end of his essay, he wonders if artists with intellectual disability, and their work, will come in “from the margins,” into the mainstream art world, “without the need to bring along their artist’s statements” (p. 133). I tried to ask Colin, on a video call, something about the words we use to write and talk about art made in a place like Studio A or Project Art Works – I tried to ask him about the “discourse”, and its challenges. The sun kept slanting into his face where he was sitting by a window in the early spring on the outskirts of London. By way of an answer to my circuitous questions, he said, after moving his chair, “You know, you can look at a William Blake image of a naked guy with a set of callipers sitting on a rock. And it’s a really interesting image. And you can talk about the texture of the thing. You can talk about what it means to you . . .” But having got interested in the image, there is so much more to DOI: 10.4324/9781003466703-3

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know. Who was Blake? How did he draw the image? What was he thinking when he made that work? What was happening in the world around him at that time? It’s the same with a painting by Thom Roberts, Colin told me. At one level, we can just let it speak to us directly. Not in a facile way, but in an immediate, non-verbal way, like any good art should. It can speak to us as a ‘thing in itself’. We can let it move us. But if we want to go deeper, we have to learn the language. If I want to write about the paintings of Thom Roberts, he told me, I need to be able to use the same kind of tools that an art historian or critic would use to write about any other artist. Biography is important, so long as it’s not pathologizing. Biography provides context. “Theorizing,” he said, “is also important. And often the way you theorize something is not using the theories that the artists have read themselves.” Looking back, I  know what was happening in this conversation, and what I was trying to get at with my line of questioning. I was looking for reassurance. I was looking for someone to tell me to keep going, to try to understand and describe and maybe even explain. But then Sontag kept haunting me. Return to the sensuous surface of art, she said. And Sedgwick. Stay beside, she said, don’t look beneath or behind or beyond. They called for words to work in service of art, rather than usurp its place. I did not and do not want to be complicit in any kind of othering or usurping or turning of anything or one into ‘discourse’. I was familiar with the critiques of people in positions of privilege speaking for or about others, particularly those who have been oppressed. For example, Alcof (1991) writes that “who is speaking, who is spoken of, and who listens is a result, as well as an act, of political struggle” (p. 15). I felt anxious and afraid and guilty all the time about the work that I was doing – stealing words from art, speaking about or for others. “Can’t art just speak for itself?” I asked at one point. “Yes, absolutely,” Colin said. “I mean, if art is just going to be something that people look at and buy or look at and walk away from and have supper and talk about, and the boat that they want to buy. . . . Then art’s not that interesting, is it? It seems to me that at one level art should speak for itself. Yes. I agree. However, it should be touching things in us as human beings that make us then want to talk about it and around it and through it. That’s part of it speaking for itself. So, standing dumbly in front of a work of art, being awe-struck, blown away, our mouths open, kind of dribbling slightly down the side because it’s so unbelievably great – if it stopped there, then it hasn’t quite driven home. We need to go through that moment of everything I’ve just described. And then once we take a deep breath, as humans, we want to bloody talk about it. Don’t we?”

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What I did

So yes, I have spoken for art and for the people who make it. I have tried to make sense.1 I have wanted to fnd things out. I blundered into the mess of everyday life armed with reference books, academic articles, a notebook, my laptop, and a camera. I recorded conversations – over a hundred – including dozens of rapid capture interviews with audiences in public venues, lasting minutes, and dozens of meandering conversations over lunch or around a making table, lasting hours.2 I spent hundreds of hours in ‘the feld’ – in the studios, at art galleries and museums, in homes, on my computer watching flms by Project Art Works of people on the other side of the world. All the time, I was writing what I learned. My time with Project Art Works was short and intense. In April  2019 I spent two weeks in the UK: one week at Project Art Works studio in Hastings, the other at their installation Illuminating the Wilderness on the fourth foor of the Tate Liverpool. When Project Art Works came to Sydney during The Big Anxiety Festival in October 2019, I spent another week observing and taking part in workshops at the Museum of Contemporary Art in Sydney. My time with Studio A has been much longer. I frst began hanging out there in mid-2018 and continued to do so regularly (once a week or so) until I began maternity leave at the beginning of 2020. I continued to engage, as a researcher, with artists, audiences, and exhibitions of Studio A  work into 2021. Where does a ‘feld’ begin and end? How is knowledge formed and what are its efects and afects? In this chapter, I will trace some of the thinking and writing that informed my approach to research. I will also describe in further detail some of the ways that I went about things. Writing culture

From the start, I set out to conduct an ‘ethnographic’ study. I was interested in the total social context3 of a place like Studio A  or Project Art Works. I didn’t only want to study the art objects made there, but to understand the relationships between people and things, and between people and people, and between people and people via things.4 I wanted to understand art objects as one locus of meaning, enmeshed among many others. I wanted to map the ripples of connection that art might aford people. I was drawn to ethnography because I thought it to be the method par excellence for doing those things – for writing the real, in a scholarly way, and for fnding out about the world from other peoples’ perspectives. I understood this endeavour, when done right, to be both immensely interesting and rooted in an ethical attention to others (but more on the problem of ‘othering’ soon).

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As I continued to read from and about the history of ethnography, I realized that ethnographic methods are open enough to allow for all kinds of experimentation, attested to by a long lineage of ethnographic texts that play creatively with form.5 There is also a long history of attention to the genre of ethnographic writing. For example, Marcus (2010) describes an ethnographic mise-en-scène best encapsulated by ‘the Malinowskian scene of encounter’: Recall those oft-quoted lines from the beginning of Argonauts of the Western Pacifc, in which feldwork is evoked and its practices are inculcated: as Malinowski intones, “Imagine yourself, suddenly set down surrounded by all your gear, alone on a tropical beach close to a native village, while the launch or dinghy which has brought you sails away out of sight” [1925, p. 46]. (p. 263) My introductions at Studio A at the beginning of this book adopt, perhaps unwittingly at the time of writing, such a trope of arrival. However, I was not simply repeating an anthropological cliché. I was trying to capture the wonder and excitement of being a stranger, an outsider, arriving at the studio for the frst time. We all arrive from somewhere, and I wanted to acknowledge that I turned up with a particular angle of arrival and that I applied a particular discipline of paying attention. But at the same time, I could have been anyone entering the studio to meet the artists and their work. That section is in fact an assemblage, what we might call ‘a true fction’.6 Geertz noted in The Interpretation of Cultures that ethnographies are like works of fction – at least in the “sense that they are ‘something made,’ ‘something fashioned’ ” (Geertz, 1973, p.  16). In Writing Culture, that famous critique and examination of anthropological modes of representation, Clifford and Marcus (1986) take this a step further, arguing that “it is important to preserve the meaning not merely of making, but also of making up, of inventing things not actually real” (p. 6). On the other hand, not all truths are constructed equally. How we represent the world, and the people within it, is signifcant. This is not a new insight, but it is one worth holding on to. In the wake of Writing Culture came an era of radical experimentation in ethnographic form, and its adoption across many overlapping disciplines, most notably in cultural studies. As the scope of its practice has expanded, what, if any, limits apply? Michael Agar highlights a few, including what he calls ‘the double narrative constraint’. “It will contain a double narrative,” he writes, “with itself as the end point: one narrative telling the history of the diferences that the representation focuses on, and the other telling the history of the construction of the representation itself” (Agar, 2004, p. 23). In other words, to make a convincingly scholarly ethnography requires us to lay our tracks clearly

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so that they can be followed in every direction, regardless of the fnal form it ends up taking. In other words, we must leave a trail as we create our situated, precarious, often collective knowledge. *** I was reading a physical book with yellow pages, worn at the spine. It was a book by Stephen Muecke (2008) and I was stuck in the margins of page 19 where someone had marked up a paragraph about Deleuze and the distinction between concepts and percepts with a light lead pencil. The wonky lines made a shape a bit like a Christian fsh. I noticed a long vertical dash down to an unintelligible word and then “is what happens or is allowed to happen when you let go of [unintelligible again]”. Elsewhere, Muecke (2016) had written that a principle of what he called ‘fctocriticism’ was that writers must “tell how we come to know rather than display what we know (a twist on the ‘show don’t tell’ adage of creative writing)” (p. xiii). But in the book with the worn-out spine he had written that people “turn fctocritical in order to think their material diferently” (p. 16). Certainly, in this book I’ve come to embrace the role that writing has played in my thinking – in making knowledge and communicating it – even as I reckon with the inaccessibility of my language for many of the artists and makers I have come to know.7 *** “So you’re writing,” Stewart and Berlant (2019) write in The Hundreds. “You make a pass at capturing something or tagging along. It’s too fast for you, it doesn’t cooperate, but you get something, backing up at the hint of precision, muscling your way in. You see how much you can’t catch, especially now that you’re onto a composition of your own” (p. 46). And Ann Hamilton (2009) asks, “What is being said? What are the forms and possibilities of saying? . . . What can words do? How can words be acts of making? . . . Through what process might I fnd words that are up to the task of all the things that need saying now?” (p. 67). I listened to the many forms of saying. I found words that captured something, even as I held them at bay, worried about the injustices they might perform. Othering

Encounters with diference have long been a staple of ethnography. The white male anthropologist sets down on a tropical beach not far from a native village, ready to ‘discover’ their ways and then present them to an audience back home. They must not ‘go native’, for fear of tarnishing the intellectual rigour of the enterprise, which requires a certain degree of objectivity, a certain part held back.8 The links here with primitivism in modern art are clear and multidirectional. The ethnographic museum, flled with strange wonders collected from ‘other’ worlds, is one quintessential example of the impulse to extract

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and reframe. Here, I will not delve into the history of classical anthropological texts that objectifed, stereotyped, made into monoliths, or otherwise failed to resist oppression of the cultures being studied. I  will not delve into the sustained and convincing critiques of this approach to research that have come from within anthropology itself, instead nodding to the alternatives, which often involve meaningful collaboration and co-production with communities in pursuit of shared or divergent goals – from archival to political.9 Aware of its pitfalls and limitations, I remain committed to the potential of ethnography as “a form of cross-cultural understanding” (Rosaldo, 1989 p. 30), while staying wary of treating people or practices as “anthropologically strange” (Hammersley & Atkinson, 2007, p. 9).10 The ‘strange’ and the ‘other’ have also long been a staple of Outsider Art narratives. For example, Roger Cardinal (2009), the man who coined the term ‘Outsider Art’, wrote: One of the criteria for the identifcation of Outsider Art is the sense of its strangeness, its idiosyncrasy; and I have hinted that this strangeness is nothing less than the mark of a coherent private world conjured up in the sweep of imagery of an individual creator. Provided we as viewers can entertain the fantasy of travelling into that world – in the same way that we might travel into a foreign country with no knowledge of its language or customs – we are in a position to savour the extreme experience of otherness, in the form of a seductive exoticism that produces an inarticulate yet intense pleasure. (p. 1466) Of course, the very idea of an ‘other’ or an ‘outsider’ requires an insider, a royal ‘we’ perhaps, as a point of comparison and contrast. Scholar and disability justice advocate Rosemarie Garland-Thomson (1997) coined the term ‘normate’ to describe “the constructed identity of those who, by way of the bodily confgurations and cultural capital they assume, can step into a position of authority and wield the power it grants them” (p. 8).11 I do not want to occupy that position. I am not normate. And yet I am not intellectually disabled. I am not autistic. How, then, to navigate the very real threat of exotifying and othering those with whom I have worked? How, then, to avoid romanticizing coherent private worlds? How, then, to avoid creating a fantasy of travelling into those worlds as an anthropologist might to a foreign country? For one, I have tried not to dwell too much on diferences, while acknowledging that I  do think quite radically diferently to someone like Thom Roberts, and that the material reality of diference has social and political implications that afect our everyday lives. It is a fne balance to walk. Simplican (2017) writes about the importance of acknowledging the relational awkwardness of disability, and the fact that disability itself is not a coherent or monolithic thing. She notes a lineage of life-writing in feminist disability

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studies that has aimed to trouble the abled/disabled binary. She calls this an ‘estranging sensitivity’. I have wanted my writing to inhabit, and investigate, neurological borderlands, which shift through time, space, and the nature of our attention to them. I have been drawn to moments of contact, exchange, and dialogue despite or across our diferences.12 I have certainly avoided a language of defcit or tragedy. For example, Sedgwick (2003) notes “a language of empathic negation” (p. 23) in response to the work of Judith Scott, as when MacGregor (1999) writes that “the notion of abstract, non-representational form is a complex idea totally outside of Judith’s ability to conceptualize” (p. 109). English (in Cooke, 2018) also notes that again and again, outsiders are diferentiated by a lack of ability to establish a relationship to instituted denotations of art. For the outsider, making could mean anything – anything but the application of a will to produce one’s art as a force identical to but separate from oneself. (p. 32) The Australian artist Anthony Mannix (who has often been placed within an outsider cannon here, and who has described his practice as like building a cosmology) helped trouble the boundaries: “I’m inside the thing I built,” he told researchers from a university in Melbourne. “So maybe you lot are the outsiders” (White, Parlane, McQuilten, & Green, 2019, p. 88).13 Rather than dwelling on diference or defcit, on inside or outside, I have tried to stay “experience near” (Geertz, 1974): sitting beside people, and the things they have built, turning that besideness into words. I have approached this task with curiosity and care, trying to understand what artists and makers do, on their own terms, but always of course through the prism of my position, which is made up of unequal parts privilege and oppression. Haraway (1988) might call this situated knowledge. Or, as anthropologist Abu-Lughod (1996) once asked, “Are there ways to write about lives so as to constitute others as less other?” Yes, she argued, through “ethnographies of the particular” (p. 473). This person, this place, this painting. Narratives of socially engaged art

In my particular approach to the messy, patterned, interconnected practices of Studio A and Project Art Works, I embarked on something quite distinct from the classic art historical monograph focused on a single artist and their work. I did not want to dwell on ‘coherent private worlds’, even as I was drawn into the intricate imagination of someone like Studio A artist Skye Saxon. Instead, I have tried to write ecologically, which I understand to mean writing about and in relationships with others – people, places, things. For example, I have articulated moments where Skye’s world collided with mine, and with those of

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other artists and audiences. I have used stories to do this, following Connelly and Clandinin (2006), who defne story as “a portal through which a person enters the world and by which their experience of the world is interpreted and made personally meaningful” (p. 375). I have used stories to help me attend to the ways that art touches bodies intimately and directly, while also underpinning “the emotions, sentiments and passions of public life”, an endeavour that Jill Bennett (2012) has described as “the study of aesthetic perception at work in a social feld” (p. 3). Thanks to Jill, I set out with the goal “not merely to reclassify objects into new clusters of visual artefacts but to animate dynamic relationships and trace connections further afeld; in other words, to trace aesthetic process as it plays out across this ‘whole’ feld” (p. 15). I was aware that the work of both Studio A and Project Art Works could be understood in terms of socially engaged art practice – also referred to as community-based, experimental, dialogic, and participatory art, to name but a few of the burgeoning labels for multi-faceted modes of making with people. As you heard in chapter  2, artists like Annis at Project Art Works explicitly frame their work in this way. There is a lively academic literature on this subject. For example, in Nicholas Bourriaud’s (2002) Relational Aesthetics “the artwork functions as the temporary terminal of a network of interconnected elements, like a narrative that extends and reinterprets preceding narratives” (p. 19). In a similar vein, Grant Kester (2004) proposes “a new aesthetic and theoretical paradigm of the work of art as a process – a locus of discursive exchange and negotiation” (p. 12). Kester’s focus on the role of dialogue in contemporary art risks elevating the verbal and discursive above all else, despite his stated desire to “acknowledge, rather than exile, the nonverbal” (p. 115). For critics like Claire Bishop, naïve celebrations of intersubjectivity, collaboration, creativity, and reparative social consensus-building can serve to ignore or downplay the important role art can play as an antagonistic force, and one not reducible to the positivist outcomes of policy-makers. Bishop (2012) was concerned about a response to art, and modes of making it, in which “an ethics of interpersonal interaction comes to prevail over a politics of social justice” (p.  25). She wanted to know “what types of relations are being produced, for whom, and why?” (Bishop, 2004, p. 65). In other words, participation, collaboration, and dialogue in and through art are not virtues in and of themselves. In Bishop’s view, art at its best should be at once autonomous and inextricably bound to the promise of better worlds,14 with a kind of transformative potential not beholden to utilitarian social outcomes. It’s a familiar argument. “Neither use nor ornament, but both,” Matarosso (1997, p. 80) wrote in his study of participation in the arts back in the 1990s. In Ali Smith’s (2014) novel How to Be Both, there is a line that has stuck with me: “Art makes nothing happen in a way that makes something happen.” It is a remix of Auden’s famous claim that “poetry makes nothing happen.” But art can be both: useless and useful, political and outside of politics, or

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enacting a diferent kind of politics to the one wrought by theory or ideology. There can be making for the sake of making, making as resistance, making because the process is beautiful or the product is beautiful, making because the thing that is made and the act of its making might just change minds or hearts or hands, or ofer them ways of connecting. That said, art world gestures within and towards the social feld do need to be interrogated. I am not alone in thinking that the tools of ethnography are well suited to this task. For instance, Siegenthaler (2013) rightly noted that scholars wishing to engage with contemporary art in the social sphere must seek and practice methods from the social sciences and social anthropology, following art into places beyond the museum or art gallery. Similarly, in Grant Kester’s (2015) editorial for the frst issue of FIELD: A  Journal of Socially Engaged Art Criticism, he calls for the development of new critical forms that move “beyond the traditions of existing art theory and criticism”, opening out to “other disciplines, including those which possess a more robust model of feld research and a greater sensitivity to the complex function of social interaction at both the micro- and macro-political level”. This approach to critical writing resonates with the practices of many artists at work in the social feld, who have increasingly turned to the discipline of anthropology, and its ethnographic approach to feld work, to frame their work (e.g., see Rutten, 2017; Schneider & Wright, 2010). Hal Foster’s (1995) iconic essay ‘The Artist as Ethnographer?’ critiqued the “quasi-anthropological artist” and their engagement with sited communities as another facet of “a primitivist fantasy” of the “other”. Since then, scholars have noted the restricted notion of ethnography that Foster evoked, derived from prominent critiques of ethnographic othering, which I have also mentioned in previous sections of this chapter (Siegenthaler, 2013). Hjorth and Sharp (2014) asked: “Has ethnography moved beyond an aesthetic gesture towards an ethical practice in art?” (p. 128). Their answer appears to be, “yes, but . . .” They propose an engagement with the ethnographic in contemporary art that does not simply equate ethnography with a certain style of documentation of cultural or geographical diference, but an ‘ethic’ of critically and refexively engaged practice. I understand this book to be a piece of socially engaged art scholarship about the socially engaged art practices of the two organizations I have studied with, and the artists who work there. It is practice based, in the sense that I  have practiced an intensive mode of sited writing, about and with communities. I am aware of some of the ethical and aesthetic tensions involved in this kind of work, some of which I  have laid out in this section. I  must concede with Bishop (2012) that perhaps “situations of negation, disruption and antagonism (the hallmarks of the historic avant-garde) are no longer perceived as viable method” (p.  189) when your practice involves the lives of other people. I am aware of the tendency to reach for social outcomes that

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socially engaged art can invite. What’s more, I am aware that it is difcult, as an outsider, an artist, an “ethnographer”, to “tear down the fragile unity of the self that is being expressed. That is the kind of risk it is perhaps fair to ask of yourself, but not of others, relative strangers” (Sean Cubitt quoted in Bishop, 2012, p. 189). In writing ecologically – writing about and in relationships with other people, places, and things – I am striving towards an articulation of art, and selfhood, that is multiple, and can operate across many levels of explanation. So, there is the level of, let’s say, the artist Thom Roberts. I have created a representation of his life and work that does justice to his autonomy, his creativity, the unique self that he is, and that his work expresses – his storied life. But then there is a diferent level, that of the interconnections between people, and between people and the material world – “autonomy through interdependence”; “a meshwork or selfess selves” (Thompson, 2007, p. 50). How might we write that? In the spaces between. In the silences. Critical space

We still do not have an adequate critical language for talking about the art made in places like Studio A and Project Art Works. The academic literature on these specifc organizations is thin to non-existent, and few scholars have given serious and sustained attention to the work of studios like them across the world. Recent publishing initiatives like Disparate Minds in the United States, and Art et al, across the UK, Australia, and United States, have tried to fll this critical gap. Social studies tend to ignore the art, art criticism tends to downplay the social, most texts fail to capture the interconnections between people, sometimes via things, at the heart of these organizations and the practices of the people who work there. The place of biography and diagnostic labels in understanding the work of artists has been one point of discussion and contention. For example, Donahue and Ortiz (2006) suggest that audiences fall back on biography or a captivating narrative to take the place of sophisticated conceptual structures, which are presumed to be absent. Nevertheless, they argue that it is the role of galleries, curators, and art writers to confdently lead by example . . . including uninhibited discussion of biography, disability, and the various relevant aspects of lifestyle and disposition that inform the work – a respectful practice of appreciating these works by approaching the unknown with wonder instead of fear. When should artwork be placed alongside the wider socio-political narratives of disability? The answer: it depends. Or, as always, there is no one or right answer. It comes down to context and, where possible, negotiation with

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the makers involved. We must feel our way, slowly, sensitively, carefully. For Lynne Cooke: It’s the narratives that worry me, as much as where the work goes, since biography still provides an important lens for the interpretation of a great deal of this work. There are situations where one person controls, shapes, and exploits a self-taught artist’s work to a degree that we seldom fnd in the mainstream art world. That’s one reason I think we need to get around, or fnd alternatives to, the primacy of intention in our curatorial and critical work. In instances involving mental and developmental disability like that of Judith Scott, what we have is an extraordinary body of creative work, but absolutely no way of knowing what the maker intended. The question becomes how to provide exhibition and discursive contexts that frame the work, that allow it to speak in a range of voices. The ideal, I think, is to keep shifting those frames. In his analysis of life history interviews with ten non-disabled arts practitioners, Perring (2005) found that they articulated three distinct but overlapping approaches to their work with learning disabled artists (artists with intellectual disability). I recognize myself in each of them – each resonates with frames that I  have tried on, and shifted between, through my thinking and writing. The frst, which Perring called ‘normalizing’, focuses on bringing artists with disability into mainstream artistic discourse, as a kind of social role valorization. The second, ‘post-therapeutic’, emphasizes the way personal or emotional issues are expressed and explored through art. The third, ‘countercultural’, aims to address the marginalization and institutionalization of people with disability. I tried on all those frames, but what anchored me, what kept me focused, was the ‘real’, the particular, the people, places and things. I tried to stay “in the middle of things” (Stewart, 2007, p. 128). Attention

The method at the heart of ethnography, “participant-observation”, is essentially a way of “living attentionally with others” (Ingold, 2014, p. 389). But as Mary Oliver (2007) once wrote, “attention without feeling . . . is only a report.” Ingold describes participant observation as an act of correspondence, and an art of inquiry – a relation with the world, and the people who inhabit it, through looking, listening and feeling – “studying with” and “learning from” rather than “study of” and “learning about” (Ingold, 2013, p. 3). To practice this inquiry “is not to describe the world, or to represent it, but to open up our perception to what is going on there so that we, in turn, can respond to it” (p. 7). The inquiry might manifest in words on a page, or some other form of representation, but the practice itself is something quite diferent.

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To create this book, my sensing body paid attention to the invisible threads spun between other bodies, between bodies and the worlds that they move through.15 Or in other words, I was the research instrument.16 I walked into rooms and felt ‘the atmosphere’. And what I felt depended on the angle of my arrival. “Or we might say,” as Ahmed (2010) did, “that the atmosphere is already angled; it is always felt from a specifc point” (p. 37). Looking

“Don’t feel strange watching and observing,” Rachel Hines, a Project Art Works artist facilitator, kept on telling me when I spent a couple of days with her in the studio. “Everyone is very used to that.”17 I think of Garland-Thomson (2009), who wrote in her book Staring: How we look: “Triggered by the sight of someone who seems unlike us, staring can begin an exploratory expedition into ourselves and outward into new worlds.”18 I think of Haraway (1988), who asked: “How to see? Where to see from? What limits to vision? What to see for? Whom to see with? Who gets to have more than one point of view? Who gets blinded? Who wears blinders? Who interprets the visual feld? What other sensory powers do we wish to cultivate besides vision?” (p. 587). I think of Berger (1972), who wrote in Ways of Seeing, “it is seeing which establishes our place in the surrounding world; we explain that world with words, but words can never undo the fact that we are surrounded by it. The relation between what we see and what we know is never settled” (p. 7). Perhaps I stared. Mostly I watched with a probing and tilting head, thinking all the time about what shots I was ‘capturing’. But then I also, sometimes, became an unscrupulous observer. I allowed myself to empty, and sway with the dance of paint, dripping or splatting or softly brushing, and I forgot about like or unlike. Listening

Once, on the radio, I listened to people talk about listening, really listening. The man was saying there is too much noise in our world. Silent places are becoming extinct. If we can learn to listen to places then, maybe, we’ll get better at listening to each other too. But it took a long time for him to learn how to listen. At frst, he thought it meant to focus hard on something – the call of a bird, for example. He thought he had to create a small window of attention. But then he realized it was more a matter of opening his mind to everything in a place, all the sounds that create its contours: winds in grass, in leaves, faint echoes. We can listen to silences too, he said, which have their own shapes.

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I thought about being in the studio and not knowing who or what to attend to, to listen to. Trying to remain open to everything, to silences, to the sound of a paint brush going back and forth over the same lines, then picking up a thread of chatter. The talk was easier to write down, already in words that only required transcription. But how to write the other stuf, how to note it, to notice it, adequately? There is a long tradition of qualitative research with people with intellectual disability that aims to ‘give voice’ to their lived experience, and an even longer tradition of research that has silenced people or privileged the perspectives of carers or health professionals (Ashby, 2011; Wilkenfeld, 2015). Listening to people with intellectual disability, privileging their ‘voices’, comes with a dilemma – how to honour the many ways that people communicate, often without words? This is particularly important when participants challenge normative ideas of what speech or voice might mean. In her research with school students considered to have signifcant disabilities, including a young man who used facilitated communication as his primary means of expression, Ashby (2011) wondered, “Was I really giving voice? Was it mine to give? Whose voice is it really? Who benefts from the telling? Is spoken voice preferable?” (p. 4). There are many ways to express oneself, and there are many ways to listen, yet verbal conversations and in-depth interviews have been the dominant mode of listening in much qualitative research, including ethnography. In the same way, we tend to emphasize the verbal in our research representations, for example only introducing research subjects through quotations from transcripts. This approach to listening to others, and to coming to knowledge, has been critiqued from multiple angles across many disciplines that seek to understand the role of silences, of the embodied, the gestural, the fragmented, and the incomplete, in understanding human lives (e.g., see Butler, 2005; Manning & Massumi, 2014; Nancy, 2007). Arts-based approaches help privilege alternative ways of listening. As I mentioned in chapter  2, Macpherson and colleagues (2016) describe a kind of whole-body listening that occurs as people with and without intellectual disability make together, the materials of art helping amplify non-verbal attunement and communication. In my research, I at once enacted and attended to this kind of listening. I moved through and between a focus on listening closely to the words of one person, or the sounds that they made moving through the world, and listening to the distributed, selfess selves of the studios, formed always in relationship. There are many sounds that make those contours. Making

I made with people to get to know them and to fnd out more about how they make. I know that this act of making together is an ancient tradition that holds power. I thought myself a maker, but I had never really made like this before:

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all sitting down together, sometimes with strangers, often with friends. Talk meandered in the making. I got lost in my tasks, like threading beads onto translucent fshing wire, one bead following another. I see this book as something that was made together. It was made in the studios. As I sat beside artists, sometimes making with them, we could have diferent kinds of conversations to the ones you might have in a conventional research interview. The words we shared bounced of the images being made. Studying with, making together. “What emerges from study will never be an answer,” writes Erin Manning (2016). “What emerges will be patient experimentation” (p. 13). Finally, I see this book as something that was made together because it is flled with images made by other people. These are just as much an embodiment of knowledge as any words I  have written. Part of the work that this book does is honouring the knowledge already made by the people with whom I have studied. Codes and lists

To make sense of my experiences, I read through all the records I had taken of it: conversations, mostly transcribed verbatim, some reconstructed; notes from ‘the feld’. As I read, I created codes in the qualitative research software Nvivo. I  wrote lists in the word processing software Microsoft Word. I  drew mind maps on pieces of paper. I compared codes and lists and maps. I pigeon-holed fragments of text into codes and lists and maps, but mainly into codes because I had previously created them for another fragment of text so I thought that I may as well chunk the new one in too for good measure. Some of the codes were very functional, I liked to think. For example, I grouped fragments of text according to the person they referred to, so that when I wanted to refer to them in my writing, I could fnd out all about them with one simple click. Some of the codes were quite abstract, like ‘sensory qualities’ or ‘perspective shift’; these I would need to reconsider in light of more fragments and more materials and more reading. I particularly appreciated the codes ‘like dancing’ and ‘it means nothing to me’. Emerson, Fretz, and Shaw (2011) ask the ethnographer to interrogate their feld notes as if they were written by a stranger: “the notes, and the persons and events they recount, become textual objects” (p. 143). We are meant to ask: “of what more general category is this an instance” (p.  148)? Instead, I wondered, “what is this art doing?”19 I remembered Sontag (1966/1990), who wrote that “the function of criticism should be to show how it is what it is, even that it is what it is, rather than to show what it means” (p.  14). I remembered Stewart (2007), who said to stay in the middle of things. So, I tried to hold of on the categories and promptly ignored all the codes I had created.

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Storied lives

The frst time I met the Studio A artist Greg Sindel, he drew my portrait. We sat at a table by the entrance to an art gallery. Photocopied drawings of some of his many comic-book characters were taped to the front of the table. The set-up felt formal, like an interview. Greg began proceedings with a question, “What kind of character would you like to be – a hero, an anti-hero, or a villain?” I had to think. Who did I want to be? I still don’t quite know. Greg was a self-professed anti-hero, “a tragic and complicated character with a difcult past . . . a tragic villain.” He could harness electricity, control ice, and withstand sub-zero temperatures. I decided to be an anti-hero too. Greg asked me why. I had to think. “I suppose I’m more complicated than a hero, less bad than a villain. Just like you.” *** I have tried to write this book without turning the people I encountered into characters or categories. I have resisted any narrative arc. I have tried to portray complicated and particular people living out their lives with art. Because this is a piece of scholarship, I  have also explored the social, cultural, and institutional narratives within which experiences are enacted, but “in a way that begins and ends that inquiry in the storied lives of the people involved” (Clandinin, 2007, p. 8). But then I wonder, Is narrative the right word? And what about its sibling synonym, story? We must let go of our stories, says Pema Chodron (2018). Bateson (1979) famously defned the term ‘story’ as “a little knot or complex of that species of connectedness which we call relevance” (p. 12). I am aware that stories can mean many things to many people, and that the word itself – ‘story’ – is used with abandon when perhaps it shouldn’t be. How else might experience come to expression? What other minor gestures might we use to make the lines tremble that compose the everyday? (Manning, 2016). It was the feeting details of storied lives that pulled me in – “hundreds of glimpses” (Muecke in Berlant & Stewart, 2019, p. 154). In this sense, I have enacted a kind of lyric social research (Abbott, 2007) – one that is grounded in feeling rather than any intimation towards a beginning, middle, or end, and surely not aiming for explanation.20 What I’ve been aiming for is a lyric essay, one which “accretes by fragments, taking shape mosaically” (D’Agata & Tall, 2007). I’ve been aiming for a kind of essay that speaks of the real through a small personal voice, which is my own but also borrowed, as I weigh and roll words around in my mouth. As my writing mentor, the poet and essayist Mark Tredinnick (2011) once wrote, “You touch the words, they touch you back” (p. 65). “The lyric,” Mark continued, “is not a heroic discourse: the ‘I’ is not what a lyric work is about. The ‘I’ is

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the string of the lyre. How the piece sounds and much of what it says is how the writer is moved by (and moves in) the world of the moment the writing sings” (p. 66). Narrative inquiry seems to reach towards the lyric, as when Caine, Estefan, and Clandinin (2013) explain their “commitment to a form of togetherness in research that seeks to explore how we are living in the midst of our stories” (p. 576). These researchers resist ‘the good story’, one with resolutions and illustrative powers, in favour of composing themselves in relation to their participants. Through being in the world, through being with others, we can come to knowledge – “Being in the scene that is pulsating, not separating what’s out there or in us” (Berlant & Stewart, 2019, p. 28). This is an ecological kind of knowledge, able to do justice to the complexity of storied lives composed together, with the world. “I  would begin with the messiness of the experiential,” writes Ahmed (2010), “the unfolding of bodies into worlds, and the drama of contingency, how we are touched by what we are near” (p. 30). Thin-flm interference

My mum read an early draft of a chapter from this book. It’s not surprising that she is my best, most adoring, critic. She told me the writing has the immediacy of a visual artwork, like a painting. She told me it is like a flm, a thin flm that sits at the nexus between a maker and a receiver. She told me about thin-flm interference, which is something that happens when light waves get tangled as they refect of two surfaces that are close together. This causes bright colours, like those you see in a sunlit soap bubble, or an oil slick on water. “The brightest colours are those that interfere constructively,” I found on a website later (OpenStax College). You are the thin flm, mum told me. But I think I might be a light wave. What have I done?

In this chapter I have mapped my approach to inquiry into the work of two studios that support neurodiverse people, with and without intellectual disability, as they make art. I show how and why I have drawn from traditions of ethnography and narrative inquiry to fll a gap in the knowledge about such studios, the artists who work there, and their embodied, relational practices. There are all kinds of ethical issues that arise when working with other people and their storied lives. I touch upon some of them, including the history of academic ‘othering’ in narratives of both ethnography and Outsider Art, as well the idea of ‘giving voice’ that flters through many forms of qualitative research. I ofer some ways forward. Over the following chapters, I will move

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deeper into the practices of each studio, honouring what I have come to know about and in relationship with other people, places, and things: a thin flm, a light wave. Notes 1 I see my own sense-making as a form of culture work, following Rosaldo’s (1989) defnition of culture as that which, “lends signifcance to human experience by selecting from and organizing it,” and as a term which refers “broadly to the forms through which people make sense of their lives, rather than more narrowly to the opera or art museums” (p. 26). 2 I received ethics approval from the University of New South Wales (HC180607) and from the NHS Social Care REC (18/IEC08/0034). 3 The anthropologist Marcel Mauss famously used the phrase ‘total social fact’ to articulate his vision of anthropology as a scientifc elucidation of social life. Here I err more towards Ingold’s understanding of the ethnographic endeavour in terms of “long-term and open-ended commitment, generous attentiveness, relational depth, and sensitivity to context” (Ingold, 2014, p. 384). 4 I nod here to Gell (1998), who wrote: “The anthropological theory of art cannot aford to have as its primary theoretical term a category or taxonomy of objects which are ‘exclusively’ art objects because the whole tendency of this theory, as I  have been suggesting, is to explore a domain in which ‘objects’ merge with ‘people’ by virtue of existence in social relations between persons and things, and persons and persons via things” (p. 12). However, studies of material and visual culture often focus on fnished objects, and what happens as they go out into the world; are used, consumed, interpreted, and so forth. As Ingold (2013) writes, “processes of making appear swallowed up in objects made; processes of seeing in images seen” (p. 7). In place of this he proposes an anthropology with art rather than an anthropology of art. Also see critique of Gell’s theory of art, which he argues downplays the ways that “art can be a mode of action – a means of intervening in the world” (p. 6). 5 For example, see Pandian and McLean (2017), McLean (2017), and of course Ellis (2004), to name only a few. In the context of intellectual disability, see the short stories, or “creative fctions” of Angrosino (1997), evoking the experiences of people who lived at a care facility in Florida. Also see Angrosino (1994). 6 It is one of two assemblages in this text of mine – the rest adheres more closely to the way events played out in real time. 7 For her PhD research, Jade French coordinated an inclusive curating project with collaborators from the inclusive arts program Blue Room, based at Bluecoat, Liverpool. Of the process, she wrote: “The group chose to use their capacity as curators to orientate audiences to their ways of understanding art, which emphatically for them, is not through text” (French, 2017). Also see French (2020). 8 Hammersley (2007) instructs: “There must always remain some part held back, some social and intellectual ‘distance’. For it is in the space created by this distance that the analytic work of the ethnographer gets done” (p. 115). Rosaldo (1989) writes of a “slippage from the ideal of detachment to actual indiference” (p. 7). 9 Marcus (2001) writes about the instrumental rapport built by anthropologists with the predesigned purposes of their inquiry in mind. He notes a more recent turn towards, and acknowledgement of, collaboration in feldwork, where people may have overlapping mutual and difering purposes. He describes this in terms of

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“partnerships with varieties of self-conscious cultural producers” (p. 524). Also see Foley and Valenzuela (2005) and Lassiter (2005). As an interesting aside, the experience of autism has often been likened to that of being an anthropologist. Oliver Sacks’ (1995) classic essay about the autistic scientist and writer Temple Grandin is titled ‘An Anthropologist on Mars’, referring to a phrase Grandin used to explain how she feels in social interactions. Autist and researcher Dawn-Joy Leong (2016) writes, “autists have variously described themselves as ‘standing apart’ from social situations, actively engaging in ‘studying’ interactions from an outsider’s, almost anthropological, standpoint” (p. 19). At the same time, difculty in understanding the concept of ‘otherness’ has been one of the defning characteristics of autism (Baron-Cohen, 1997). Garland-Thomson continues: “If one attempts to defne the normate position by peeling away all the marked traits within the social order at this historical moment, what emerges is a very narrowly defned profle that describes only a minority of actual people” (p. 8). Alcof (1991) writes: “we should strive to create wherever possible the conditions for dialogue and the practice of speaking with and to rather than speaking for others” (p. 23). Here, the authors write about the importance of “opening art-world discourse to accommodate outsider artists’ insights into their own lives and work – as told by the artists. . . . Providing artists with the ability to determine their own position as artists in the contemporary feld” (p. 88). When Kylie Madonna (a.k.a. Gabrielle Mordy) asked a small group of Studio A  artists what they thought outsider art meant, they all agreed that it referred to people who make art outside, in nature. Sometimes they do go and draw or paint en plein air, and so sometimes they are outsider artists. Here I refer to Bishop’s (2012) use of Ranciere in Artifcial Hells (p. 29). In her treatise on the sensory in ethnography, Pink (2009) quotes Simmel (1997 [1907]), who wrote, “One will no longer be able to consider as unworthy of attention the delicate, invisible threads that are spun from one person to another” (p. 12). In his essay ‘Poetry, Uncertainty and Opacity’ the anthropologist Michael Jackson sets Heisenberg’s uncertainty principle of against ethnographic methodology: “Our instruments for grasping the nature of subatomic phenomena partially determine what we see. Some methods suggest that subatomic phenomena are particular; others that they are wavelike. In other words, the means of observation constitutes the reality of what is observed.” In ethnography, “the instrument of observation is a human being . . . and the observed are not objects but other subjects. .  .  . Our understanding is born, therefore, of the interactions between observer and observed” (Pandian & McLean, 2017, p. 91). Because when someone doesn’t use many words to communicate, the other people in their life must carefully observe behaviours to fnd out how they are feeling. More on this in Chapter 4. She continued, “Because we come to expect one another to have certain kinds of bodies and behaviours, stares fare up when we glimpse people who look or act in ways that contradict our expectations. Seeing startlingly stare-able people challenges our assumptions by interrupting complacent visual business-as-usual. Staring ofers an occasion to rethink the status quo. Who we are can shift into focus by staring at who we think we are not.” Jill Bennett (2012) also asks this in her book Practical Aesthetics. Abbot writes: “A narrative writer seeks to tell us what happened and perhaps to explain it. A  lyrical writer aims to tell us of his or her intense reaction to some

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portion of the social process seen in a moment. This means that the frst will tell us about sequences of events while the second will give us congeries of images. It means that the frst will try to show reality by abstract mimesis while the second will try to make us feel reality through concrete emotions” (p. 76).

References Abbott, A. (2007). Against narrative: A preface to lyrical sociology. Sociological Theory, 25(1), 67–99. doi:10.1111/j.1467-9558.2007.00298.x Abu-Lughod, L. (1996). Writing against culture. In R. G. Fox (Ed.), Recapturing anthropology: Working in the present (pp. 137–162). Santa Fe, NM: School of American Research Press. Agar, M. (2004). We have met the other and we’re all nonlinear: Ethnography as a nonlinear dynamic system. Complexity, 10(2), 16–24. doi:10.1002/cplx.20054 Ahmed, S. (2010). Happy objects. In M. Gregg & G. J. Seigworth (Eds.), The afect theory reader (pp. 29–51). Durham, NC: Duke University Press. Alcof, L. (1991). The problem of speaking for others. Cultural Critique, 20(5). doi:10.2307/1354221 Angrosino, M. (1994). On the bus with Vonnie Lee: Explorations in life history and metaphor. Journal of Contemporary Ethnography, 23(1), 14–28. Angrosino, M. (1997). Opportunity house: Ethnographic stories of mental retardation. Walnut Creek, CA: AltaMira. Ashby, C. (2011). Whose “voice” is it anyway?: Giving voice and qualitative research involving individuals that type to communicate. Disability Studies Quarterly, 31(4). doi:10.18061/dsq.v31i4.1723 Baron-Cohen, S. (1997). Mindblindness: An essay on autism and theory of mind. Cambridge, MA: MIT Press. Bateson, G. (1979). Mind and nature: A necessary unity. London: Wildwood House. Bennett, J. (2012). Practical aesthetics. Events, afect and art after 9/11. London: I.B. Tauris & Co. Berger, J. (1972). Ways of seeing. London: BBC. Berlant, L. G., & Stewart, K. (2019). The hundreds. Durham, NC: Duke University Press. Bishop, C. (2004). Antagonism and relational aesthetics. October, 110(110), 51–79. doi:10.1162/0162287042379810 Bishop, C. (2012). Artifcial hells: Participatory art and the politics of spectatorship. London; New York: Verso Books. Bourriaud, N. (2002). Relational aesthetics. Dijon: Les Presses du réel. Butler, J. (2005). Giving an account of oneself. New York: Fordham University Press. Caine, V., Estefan, A., & Clandinin, D. J. (2013). A return to methodological commitment: Refections on narrative inquiry. Scandinavian Journal of Educational Research, 57(6), 574–586. doi:10.1080/00313831.2013.798833 Cardinal, R. (2009). Outsider art and the autistic creator. Philosophical Transactions: Biological Sciences, 364(1522), 1459–1466. http://www.jstor.org/stable/40485920 Chodron, P. (2018). Comfortable with uncertainty: 108 Teachings on cultivating fearlessness and compassion. Boulder, CO: Shambhala Publications. Clandinin, D. J. (Ed.). (2007). Handbook of narrative inquiry: Mapping a methodology. London: SAGE.

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Cliford, J., & Marcus, G. E. (1986). Writing culture: The poetics and politics of ethnography. Berkeley, CA: University of California Press. Connelly, F. M.,  & Clandinin, D. J. (2006). Narrative inquiry. In J. Green, G. Camilli, & P. B. Elmore (Eds.), Handbook of complementary methods in education research (pp. 375–385). Mahwah, NJ: Lawrence Erlbaum. Cooke, L. (2018). Outliers and American Vanguard Art. Chicago, IL: University of Chicago Press. D’Agata, J., & Tall, D. (2007). The lyric essay. Retrieved from www.hws.edu/senecareview/ lyricessay.aspx Donahue, A., & Ortiz, T. (2006, January 20). Discussing biography. Retrieved from www.disparateminds.org/blog/2016/1/18/on-biography Ellis, C. (2004). The ethnographic I: A  methodological novel about autoethnography. Lanham, MD: Rowman Altamira. Emerson, R. M., Fretz, R. I., & Shaw, L. L. (2011). Writing ethnographic feldnotes (2nd ed.). Chicago, IL: The University of Chicago Press. Foley, D., & Valenzuela, A. (2005). Critical ethnography: The politics of collaboration. In N. Denzin & Y. Lincoln (Eds.), The Sage handbook of qualitative research (3rd ed., pp. 217–234). Thousand Oaks, CA: SAGE. Foster, H. (1995). The artist as ethnographer? In G. Marcus & F. Myers (Eds.), The trafc in culture: Refguring art and anthropology (pp.  302–309). Berkeley, CA: University of California Press. French, J. (2017). Art as advocacy: Exploring curatorial practice by learning disabled artists as a site for self-advocacy (PhD Thesis). The University of Leeds. Retrieved from www.artasadvocacy.co.uk/ French, J. (2020). Inclusive curating in contemporary art. Amsterdam: Amsterdam University Press. Garland-Thomson, R. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press. Garland-Thomson, R. (2009). Staring: How we look. Oxford; New York: Oxford University Press. Geertz, C. (1973). The interpretation of cultures: Selected essays. New York: Basic Books. Geertz, C. (1974). “From the nativ’s point of vie”: On the nature of anthropological understanding. Bulletin of the American Academy of Arts and Sciences, 28(1), 26–45. doi:10.2307/3822971 Gell, A. (1998). Art and agency: An anthropological theory. Oxford: Clarendon. Hamilton, A. (2009). Making not knowing. In M. J. Jacob & J. Baas (Eds.), Learning mind: Experience into art. Chicago, LA: School of the Art Institute of Chicago, University of California Press. Hammersley, M., & Atkinson, P. (2007). Ethnography: Principles in practice (3rd ed.). London: Routledge. Haraway, D. (1988). Situated knowledges: The science question in feminism and the privilege of partial perspective. Feminist Studies, 14(3), 575. doi:10.2307/3178066 Hjorth, L., & Sharp, K. (2014). The art of ethnography: The aesthetics or ethics of participation? Visual Studies, 29(2), 128–135. doi:10.1080/1472586X.2014.887261 Ingold, T. (2013). Making: Anthropology, archaeology, art and architecture. New York: Routledge. Ingold, T. (2014). That’s enough about ethnography! HAU: Journal of Ethnographic Theory, 4(1), 383–395. doi:10.14318/hau4.1.021

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Kester, G. H. (2004). Conversation pieces: Community and communication in modern art. Berkeley, CA: University of California Press. Kester, G. H. (2015). Editorial. FIELD: A Journal of Socially Engaged Art Criticism, Spring(1), 1–10. https://feld-journal.com/issue-1/kester Lassiter, L. (2005). The Chicago guide to collaborative ethnography. Chicago, IL: University of Chicago Press. Leong, D.-J. (2016). Scheherazade’s Sea – autism, parallel embodiment and elemental empathy. (PhD Thesis). University of New South Wales. MacGregor, J. M. (1999). Metamorphosis: The fber art of Judith Scott. Oakland, CA: Creative Growth Art Center. Macpherson, H., Fox, A., Street, S., Cull, J., Jenner, T., Lake, D., Lake, M.,  & Hart, S. (2016). Listening space: Lessons from artists with and without learning disabilities. Environment and Planning D: Society and Space, 34(2), 371–389. doi:10.1177/0263775815613093 Manning, E. (2016). The minor gesture. Durham, NC: Duke University Press. Manning, E., & Massumi, B. (2014). Thought in the act: Passages in the ecology of experience. Minneapolis, MN: University of Minnesota Press. Marcus, G. E. (2001). From rapport under erasure to theaters of complicit refexivity. Qualitative Inquiry, 7(4), 519–528. doi:10.1177/107780040100700408 Marcus, G. E. (2010). Contemporary feldwork Aesthetics in art and anthropology: Experiments in collaboration and intervention. Visual Anthropology, 23(4), 263– 277. doi:10.1080/08949468.2010.484988 Matarasso, F. (1997). Use or ornament?: The social impact of participation in the arts. Stroud: Comedia. McLean, S. (2017). Fictionalizing anthropology: Encounters and fabulations at the edges of the human. Minneapolis, MN: University of Minnesota Press. Muecke, S. (2008). Joe in the Andamans and other fctocritical stories. Erskineville: Local Consumption Publications. Muecke, S. (2016). The Mother’s Day protest and other fctocritical essays. London; New York: Rowman & Littlefeld International. Nancy, J.-L. (2007). Listening. New York: Fordham University Press. Oliver, M. (2007). Our world. Boston, MA: Beacon Press. OpenStax College. Thin flm interference. Retrieved from www.coursehero.com/ study-guides/austincc-physics2/27-7-thin-flm-interference/ Pandian, A., & McLean, S. (Eds.). (2017). Crumpled paper boat: Experiments in ethnographic writing. Durham, NC: Duke University Press. Perring, G. (2005). The facilitation of learning-disabled arts: A cultural perspective. In C. Sandahl & P. Auslander (Eds.), Bodies in commotion: Disability and performance. Ann Arbor, MI: University of Michigan Press. Pink, S. (2009). Doing sensory ethnography. London: SAGE. Rhodes, C. (2008). An other academy: Creative workshops for artists with intellectual disabilities. The International Journal of the Arts in Society, 3(1), 129–134. Rosaldo, R. (1989). Culture  & truth: The remaking of social analysis. Boston, MA: Beacon Press. Rutten, K. (2017). No strings attached: Exploring the relationship between anthropology and contemporary arts. Critical Arts, 31(2), 1–11. doi:10.1080/02560046.2 017.1355400 Sacks, O. W. (1995). An anthropologist on mars. Sydney: Picador.

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Schneider, A., & Wright, C. (2010). Between art and anthropology: Contemporary ethnographic practice. Oxford; New York: Berg. Sedgwick, E. K. (2003). Touching feeling: Afect, pedagogy, performativity. Durham, NC: Duke University Press. Siegenthaler, F. (2013). Towards an ethnographic turn in contemporary art scholarship. Critical Arts, 27(6), 737–752. doi:10.1080/02560046.2013.867594 Simmel, G. (1997 [1907]). Simmel on culture: Selected writings. In D. Frisby & M. Featherstone (Eds.), Defning Culture. Los Angeles, CA: Sage Publications. Simplican, S. C. (2017). Feminist disability studies as methodology: Life-writing and the abled/disabled binary. Feminist Review, 115(1), 46–60. Smith, A. (2014). How to be both. London; New York: Hamish Hamilton. Sontag, S. (1966/1990). Against interpretation, and other essays. New York: Anchor Books. Stewart, K. (2007). Ordinary Afects. Durham, NC: Duke University Press. Thompson, E. (2007). Mind in life: Biology, phenomenology, and the sciences of mind. Cambridge: Cambridge University Press. Tredinnick, M. (2011). The lyric stance. Island, (126), 60–70. White, A., Parlane, A., McQuilten, G., & Green, C. (2019). Outsider art in Australia: Artists’ voices versus art-world mythologies. Art and Australia, 56(1), 80–95. Wilkenfeld, B. (2015). “Being heard”: Qualitative research conundrums with individuals with developmental disabilities. Research on Social Work Practice, 25(6), 702.

4 PROJECT ART WORKS The Not Knowing of Another

A flm

My frst encounter with Project Art Works was via a flm. It was a threechannel video installation called The Not Knowing of Another (Adams, 2008).1 The flm took me on a walk from a semi-decrepit railway bunker, over a bridge,

FIGURE 4.1

Kate Adams, The Not Knowing of Another, 2008, flm still.

Source: Photo courtesy the artist and Project Art Works DOI: 10.4324/9781003466703-4

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down some steps, and out to the seashore. In the flm, I saw Paul Colley, and his mother, Kate Adams, for the frst time. I saw them touch briefy, more than once. I saw him clap and rock and heard him make some sounds and noises. I saw Kate help Paul down the stairs. I saw them from all kinds of perspectives: a GoPro strapped to Paul’s chest, a camera tethered to a weather balloon up high, a close-up of Paul’s face, long shots of fgures in the distance, and at the end a beach at sunset with all its glitter and glimmer and the bobbing up and down of the sea and of the camera attached to a body. In those moving images in that darkened room, I didn’t know who they were or what it all meant. They were just humans, walking together, in the world: the vastness of it, the beauty of it. But I have thought a lot, since I frst saw that flm, about what it means. The Not Knowing of Another. I’ve turned those words, its title, around and around in my head and over my tongue. The not knowing of another. I think those words, that work, get at something central to the grander mission of Project Art Works, where art and flm are used, quite explicitly, as a means of connection between people with diferent kinds of brains. Theory of mind It may be thought that there could be a way of knowing another’s mind – say by telepathy – and that it is simply a contingent fact that this is not a way that is open to human beings. Telepathy would allow one to know another’s thoughts and feelings by coming to share them. The problem, however, is that if I have your experiences, then those experiences are mine and not yours. (Avramides, 2019)

I start this section with a nod to philosophy, which has had a long-standing interest in “the problem of other minds” – how can we ever say that we know another’s mind? Descartes made this problem famous with his brain in a vat – I think therefore I am – and set Cartesian dualism in train for centuries, slicing a line between mind and body like a surgeon’s cut in the corpus callosum. But here I do not aim to canvas such an enormous and often-amorphous feld of philosophical debate. In psychology the problem of other minds is understood diferently, as a functional one – how do humans (and some other animals) come to make good enough guesses about others’ mental states? The term ‘theory of mind’ is used to describe the ability to attribute intentional mental states (beliefs, desires, thoughts) to others based on what they say and do. According to psychologists, the social-cognitive mechanisms necessary for theory of mind, like joint attention and imitation, develop in early childhood. For example, Meltzof (2011) has proposed a Like-Me theory of developing social cognition, grounded in an infant’s proclivity towards mapping the equivalence between bodily acts and

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mental states as they come to understand that others are ‘like me’. Biological mechanisms, like those of mirror neurons, which fre in our brains when another person performs an action – “coding the equivalence between oneself and others” (Pfeifer & Dapretto, 2011, p. 188) – are often seen as crucial to theory of mind. But what happens when others aren’t “like me”? Costall and Leudar (2004, 2007) take issue with the largely implicit, mentalistic or cognitivist model that underpins theory of mind, which presupposes that understanding other people involves the ability to ‘represent’ their internal states. This model assumes that “we all have to engage in an inferential leap beyond and behind what we can actually ‘observe’ about other people in order to relate to them truly as persons” (Costall & Leudar, 2007, p. 291). Meanwhile, some people have an impaired ability to perform this supposedly fundamental mechanism. For example, a long body of literature has claimed that people with autism ‘lack’ theory of mind, and therefore empathy – psychologists like Simon Baron-Cohen (1997) have described autistic people as “mindblind”. Dufy and Dorner (2011) describe this as an autistic “mindblindness” narrative. It is tied up with defcit models of autism, which frame it as a disorder that requires intervention or ‘fxing’. However, Milton (2012) reframed this narrative as a “double empathy problem”. In other words, we might say that neurotypical, non-autistic people lack the tools to understand the mental states, or more broadly put, the lived experiences, of people who inhabit brains that are radically diferent from their own. In part, this is because neurotypical theory of mind is founded on socially constructed and biologically wired heuristics – like me, or not like me. We project our own norms onto others, whether they like it or not. Milton emphasizes that this is a double problem, based in the social interaction between people who are cognitively diferent. Unfortunately, it afects autistic people much more that their neurotypical counterparts. Theory of mind posits a gap between behaviour and mind, a Cartesian rift, which people must make sense of through theoretical inference, generating a hypothetical ‘representation’ of the intentional mental state of another individual. But this is not the only way to understand how we come to know other minds – how we empathize – and it often ignores the social and environmental contexts within which interactions occur. For example, autist and researcher Dawn-Joy Leong (2016) has described her own experiences of a kind of elemental empathy: feeling with the animate and inanimate world, through the body. There are other ways of knowing another. Calm bafement

Project Art Works has developed a practice that I  see as their way of helping neurotypical people overcome the double empathy problem, to enter a diferent mode of empathy that does not insist on mentalizing, but rather

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encourages a feeling-into, a being with. Project Art Works uses the phrase ‘calm bafement’ to describe how to approach sitting with feelings of discomfort that arise from not knowing how to communicate with another person, and from not being able to parse a lived experience that may be radically different from your own. In their document, ‘Guidelines for working with people with complex needs in a collaborative workshop’ they state, “Calm bafement is the key. If you are bafed by a person’s way of communicating be calm with the feelings this may induce in you and over time you will fnd a way to connect with them. Don’t rush. Be calm.” I’ve had the chance to participate in, and observe, many diferent collaborative workshops led by Project Art Works, including with drop-in audiences from the public and with people from local social care organizations. The frst workshop I joined was at an art gallery in Brighton, with a group of seven participants – referred to as ‘customers’ by the organization who had brought them there, which had recently been bought by a for-proft social care provider. The artists running the workshop had laid paper out on the foor – big circles, about three metres in diameter each, dusty boot-marks already visible on the white. I was drawn to the line made by a wheelchair as it firted with the edge of a circle. One of the facilitating artists, Sara Dare, handed me a piece of graphite taped to the end of a long bamboo pole and I followed the wheelchair’s movement with my own line. As I  watched the others interact, from my chair beside the paper, I  held onto the bamboo and moved it thoughtlessly, occasionally peering down to see where it went. It looked like brain waves, or the undulations of a seismograph. Next to me, a woman with very thin arms held onto her own pole. Her support worker encouraged her to move the pole and watched as the marks formed on the white ground. “Isn’t that amazing,” the support worker said. “It looks like mountains.” The woman made high but guttural grunts. I didn’t know if they were a sign of happiness or frustration. She looked at times as though she was crying, her face all scrunched up and turned away from the group. Her small, tentative lines – the product of small, tentative movements of a thin wrist, a wavering arm – sat close to mine and then touched them. Her mountains reached my brain waves. I wasn’t sure, then, if I understood her any better. I desperately wanted to uncover something of her experience. But how could I access that? I couldn’t interview the woman with the thin arms to fnd out what she thought of making with me on that day, of our lines connecting and then diverging. I could attend closely to the process of making, alongside her. I could allow all my pent-up anxiety, my need to pin things down with language, to dissolve in the doing. I could simply ‘be with’ her and let that be enough. In that feeting interaction I was enacting ‘calm bafement’ – or at least something approaching it.

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Later, I would stumble upon an article that also seemed to explore a kind of ‘calm bafement’ (Bos & Abma, 2021). The lead researcher had been hanging out in “reversed integration” settings in Holland – former institutions that people without disability were beginning to inhabit. Bos noted his own response to interactions with people who didn’t use verbal language to communicate. His conclusion: we, people without intellectual disability, must put down “our verbal and cognitive weaponry”, our quick jump to words. He described confusing, unsatisfactory encounters with a man he called Harry, who was known for approaching people in the streets and initiating physical contact – a hand to arm, for example, with a tight grip – and staring into their eyes without saying a word, but perhaps with a bark or a grunt. The researcher explained: I felt deeply unable to respond adequately to him. I felt shaken and uncertain, because I did not know what Harry approached me for, why he approached me so obtrusively and (apparently) excited, nor how I should react to keep this unusual interaction going in a way that would please both of us. (p. 11) When he spoke to neighbours, they expressed a similar response, which led them to avoid Harry in the street or cut encounters short. He went on to describe a slow process of getting to know Harry, which culminated in an encounter that unfolded in complete silence, but with a deep exchange of “gazes and smiles, without words or sounds”. “One of the things people experience,” Kate Adams told me, “when they encounter someone who might not use the normal modes of communication or expression or social engagement, is a real vulnerability.” People aren’t sure how to feel about diference. The uncertainty, the lack of social norms to fall back upon, can be uncomfortable. Teaching neurotypical people to sit with their discomfort, to embrace not knowing, and then learn how to communicate diferently, bodily, paying attention with curiosity and wonderment, is one core part of the Project Art Works project.2 In the words of Pema Chodron (2018) in her wise book Comfortable with Uncertainty, in a section titled ‘Nothing Solid’, “this moving away from comfort and security, this stepping out into what is unknown, uncharted, and shaky – that’s called liberation” (p. 24). What she knows

“What I know,” Kate Adams wrote in a book chapter with me (Adams, Boue & Watfern, 2022), her words sitting alongside mine, but separate, is that if I take care to actively listen and see, make eye contact when talking in a calm and clear way, am observant and responsive to the inconspicuous signifers in Paul’s presence, then we have the possibility of connection.

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Kate Adams, The Not Knowing of Another, 2008, installation view and flm still.

Source: Photos courtesy the artist and Project Art Works

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I know not to sit down too close or abruptly or to make assumptions or try and interpret but to be calm and bafed and open. These are lessons on being and Paul is a patient and stoic teacher. He is enigmatic and uncompromisingly truthful. Without guile or malice. Just very purely himself. This is disarming and challenging because it holds trust and innocence – perhaps more of the latter than the former. He reveals these qualities in every particle of his being. It took me a while after our clear-eyed, angelic child had been replaced by a devastating litany of clinical labels and inabilities to fnd my way back to him. To do this I had to be quiet and to develop an approach to fnding out about him through a form of open and loving research. Like an artist’s practice; if I do this what happens? Not too much! Perhaps by approaching it another way – connection. Input and output. By incremental degrees nonverbal communication became so much more expansive than reductive, training the senses and opening out an extraordinary world. Pat pat pat

During a workshop, a woman brought a small canvas over to a man, who was wearing a bib that was often in his mouth, being chewed on. The woman got a big tube of purple paint and held it up close to the man’s hands, squirting it. She showed him her fngers squelching into the paint, her fngers rubbing onto the small white canvas, her fngers drumming on the canvas, slowly and then faster, looking to the man for signs of response, of enjoyment perhaps. The man seemed focused on her movements. The pitter patter, pat pat pat, drruum d r u m of her fngers on the taut canvas.3 Over at another part of the big white circle on the ground, one woman massaged paint into another woman’s tight fsts, and they loosened slowly. *** In the Project Art Works anthology, on page 50, there is a polaroid shot of two pairs of hands, holding each other. The nature of the hold is ambiguous. There are paint-splattered clothes and cloth in the background. One hand grasps, another hand sits on top. *** During the last moments of the workshop, the pieces made during the session were shown to the participants. One canvas was just two squirts of paint: a purple squirt and a green squirt. Thick paint. It glistened. “I can feel the texture and temperature of it,” said one support worker. The participants weren’t silent, but they did not speak in words. Paul: I

I met Paul Colley for the frst and only time on a Thursday afternoon. He was sitting at a table with an artist called Georgie, in front of paintings she had

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Anonymous, Workshop, polaroid.

Source: Photo courtesy Project Art Works

made with another participant, Gemma, in the morning – drips and dashes and daubs, the record of that earlier interaction. Tete a Tete: portraits by Henri Cartier-Bresson sat on the foor, beside piles of cut-up printed out photos. Georgie, a photographer herself, was cutting out rectangles from a cardboard edifce that would eventually become a book. Paul likes books, he likes turning their pages. Paul also likes faces, particularly the faces of people he knows well, people he loves. Faces motivate him, his father Tony Colley had told me.

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I watched Paul watch as Georgie stuck a picture of Dan, Paul’s favourite support worker, inside one of the cardboard windows. I watched as Georgie placed a blank square canvas onto a chair in front of them. She set up a slide projector and placed a transparency of Dan into a slot. She spent a long time adjusting the focus. I focused on making my gaze loose but all-encompassing as I took in the studio in its entirety, keeping at the centre of it all the face of this support worker I’d never met growing larger and then smaller, coming in and out of focus, projected onto a blank canvas. She placed a few more slides on the desk in front of Paul and asked, “Which one do you want to see?” He pointed and she put it in the slot. A picture of Kate. Throughout their afternoon together, Georgie constructed an ever more elaborate environment around them – transparencies everywhere, photographs printed onto acetate, including a proof sheet of Kates. The expression on her face varied only slightly.

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Paul Colley in the studio, 2019.

Source: Photos courtesy the artist and Project Art Works

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Georgie explained: last week in the studio, they had Georgie’s fancy camera, and they brought people in to be photographed by Paul. His subjects sat perpendicular to him but facing the camera. Georgie had set it up so that the camera was connected to a wire connected to a button that Paul could push to take the photograph. But he didn’t have to look at his subject; he looked at a projection of the camera’s viewfnder onto a screen directly in front of him. At one point on this Thursday afternoon, Paul had a snack. He ate an apple. It was silent in the studio, so the eating of the apple felt particularly loud. It was silent but there were so many sounds. People walking upstairs, paper being ripped, footsteps, humming, tape unfurled and then stuck, an apple being eaten. At one point Paul fell asleep. I looked at him cautiously. Paul, the master of looking. Paul, the subject of so many flms and videos. Paul, the maker of so many flms and videos. Paul, the collaborator. Rather than a maker, perhaps he is a gazer. But in that sense, he is also a director. He directs with his gaze. Rachel, the lead artist on a Thursday, said to me later that Paul has “a cinematic way of working people out. A nuanced way of understanding facial expressions . . . Looking through, beyond, and reversing.” Eden: mind as landscape

The artist Eden Kötting worked away on her still life. It was her twelfth day at the painting. When Eden had frst arrived, Patricia, a Project Art Works staf member, took the bag she was carrying and carefully set up the scene, referring to a photograph of it from the previous week: Boots Maps of somewhere in Sussex and somewhere in France Red thermos Scarf Mittens White camping plate Metal thermometer Plaid cloth background: orange and yellow and green and blue and pink Eden said the word ‘happy’ a lot. Happy, happy, happy. She held out her hand and I squeezed it as I crouched next to her, watching her apply daubs of a brilliant turquoise to the bottom of the canvas. The bits of her still life and the paint on the canvas made a strange symmetry. Was the turquoise from the map or the cloth? Both had pink and green at right angles, running parallel. I don’t know. I know from my reading that Eden is the daughter of the flm maker Andrew Kötting. They make work together – flms, animations, collages, drawings.

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FIGURE 4.5

Eden Kötting work in progress, Project Art Works studio, 2019.

Source: Photo: Chloe Watfern. Courtesy the artist and Project Art Works

They have spent a lifetime making together. They mostly do not do this at Project Art Works. Andrew Kötting has written many things about his daughter Eden and their making together. He has written about “not knowing where the knowing has come from. The fash of insight so comforting . . . Eden and her mind as landscape” (Kötting, 2002). He has written that “the work she creates might be seen as an extension of her mind’s eye. Her psyche a strange sing-song geography” (Kötting, 2011). “But this is not just about Eden,” he recognized. It is about a studio and the group who inhabit it, give it “an atmosphere of purpose and industry”, make it “a place of focus and camaraderie”, “a place of industry and contemplation, a meditative hive of activity”. A  place that “rumbles with relationships”, he wrote in a later essay (Kötting, 2012). “It is alive with happening. And however singular the atmosphere might at frst appear the making of art is inherently collective.” By the end of the day, Eden had added many more daubs of colour to her still life. I wanted to walk through it, touching the colours with my toes. But I didn’t. I said good-bye. Patricia helped Eden pack the boots and maps and thermos and scarf and mittens and cloth and thermometer and plate back into her bag. Patricia put the canvas away for next week.

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Paul: II

Being Paul’s mother has informed everything, Kate told me once. We were sitting in a café above an art museum. “Becoming a mother is one thing,” she said. “And then becoming aware that your child is diferent, and . . .” she searched for words, “vulnerable . . . more vulnerable than other people, is grief.” That grief, she told me, happened slowly, over time. Paul was a perfect, beautiful baby. She remembered, when he was about fve months old; she put him on his tummy on the foor after a bath. She could see that he was trying to push up with his hands, but then his arms were shooting back by his sides. It looked like something was short-circuiting. “And I immediately felt it in my stomach, it felt like an emotional surge, of fear.” Gradually, they took Paul for tests. More and more tests. When Paul was about ffteen months old, they had a meeting with a paediatrician, who told them, “Well, he’s profoundly disabled intellectually, and I shouldn’t think he’ll walk, I shouldn’t think he’ll talk, and he won’t be able to live an independent life. But you can have another child, and he can always live in an institution.” “That was the moment at which things changed,” Kate said. They went through a process of emotional adjustment, which also generated a kind of energy to do something. They did an intensive programme of therapy for fve years. For the frst two years they worked seven days a week, ten hours a day. They worked with forty volunteers from the local community on a system of sensory stimulation, to try and bring Paul ‘into the world’. There they were, Kate, Tony, Paul’s sister Ruby, and their team of volunteers, teaching Paul to crawl, motivating him by using objects and images that he was obviously drawn to – a Japanese print of a bird on the wall in their living room, pictures of planes and faces, the night sky. Next, they were teaching Paul to walk. “But when we got to the intellectual, cognitive stuf, it hit a kind of wall.” Kate understood this to be a processing issue, an input-output error. Because “he understands much more than he can explain.” One way that Kate and Tony tried to understand Paul was through flm. They flmed and documented everything – a record of Paul’s response to the therapy; a record of his interactions with the world, to inform the slew of medical and allied health professionals they encountered; a record to take back to the child assessment centre with them; a record to share with other families going through similar journeys. It was a tool for advocacy at lots of diferent levels. Finally, it was a kind of visual diary.4 “It’s 1985,” writes Pratap Rughani (2012) in his essay ‘The Art of Not Knowing’: A small boy, Paul Colley, is held in the centre of the frame, his limbs repeatedly exercised by adults holding him prone on a table. His limbs are

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moved in quick rhythms to help him develop ‘cross-patterning’, a step in the healthy development of a child that most parents never need to know enough about to name. (p. 204) Rughani also makes the connection between the fastidious video documentation that Kate and Tony used with Paul, and the central role of flm in everything that Project Art Works does. When Kate and Jon Cole set up Project Art Works some years later, he writes, “[T]his intimate family experience inspired the company’s use of video as a creative and documentary tool” (p. 204). Kate once told me that she is always discovering ‘something more’ about Paul through the process of flming with him. It’s a way of working that allows you to pay very close attention, to discover something more, to discover a response, frame by frame; to slow down and speed up. For example, Kate explained, Paul has always rocked, “He rocks very closely to things, and for a long time I was worried that he would hurt himself or hit something.” But when she started to flm him rocking, she realized that he was incredibly accurate with his body movements, that they weren’t out of control in any way. He understood the space that he was in, perhaps missing something by about 5mm each time. Kate continued, “There’s ways in which flming really helps me understand him.5 But also, to explore the otherness of him. Just because I’m his mother and carer, I don’t know all there is to know. He’s a mystery. But I think that’s true of everyone. It’s a way of making my relationship with him no diferent to anyone’s relationship with anyone else.” In a flm artwork by Kate called New Year’s Day (2004), I watched Paul out on a beach taking great big strides along the wet sand. It was a big open expanse of beach, fat as a pancake. The wet sand refected the sky. Paul ran, free. Sometimes his body was silhouetted against the horizon of sea and sand and sky and I followed the black outline of his fgure in space. He moved in circles around his mother, as though she had a gravitational pull. Kate told me that “Paul is the source of so many ideas because he has completely shifted the centre of gravity of my life. It’s not something I could turn away from. What I’ve learned from him, I think, will always inform what I do.” Knowing, not knowing

We have been dancing around these words – ‘knowing, not knowing’. The academic in me wants to go deep into questions of epistemology or hermeneutics. I’ll try sticking with the subject by taking it sideways a little bit. I imagine the philosopher of care Eva Kittay sitting in a room flled with philosophers. Papers rustle. There are stony stares, and the walls are probably sandstone. They are focused on defning the parameters of morality: who

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do we enclose within the circle of personhood? They list cognitive capacities. They consider the capacities of non-human animals like chimpanzees and dogs and magpies. Suddenly, Kittay must defend her daughter Sesha from comparison with “What did you say – a pig?” (Kittay, 2009, p. 621). Kittay is not taking issue with the position that a pig, or a magpie, could be endowed the rights of personhood that most humans enjoy. Rather, she reels from the argument that the moral status of the “radically cognitively limited” should be demoted below that of other human beings. Or rather, that moral status should be assigned on the basis of psychological capacities, and specifcally, higher-level cognition. Elsewhere, the bioethicist Jef McMahan had written that people like Sesha – people with, as these philosophers put it, “profound cognitive disability” – are “almost entirely unresponsive to their environment and to other people . . . [and] incapable of deep personal and social relations, creativity and achievement” (McMahan, 1996, p.  5). I  am reminded of all that we are learning about the intelligence of plants, of forests, of mycelial networks, of ecosystems. I am reminded of all that we have done to those things in the name of the superior capacities of the human species. Kittay’s response to the philosophers in that room helps illuminate the ethics of care that she has done so much to develop, while she never abandons these vital and elusive words – knowing, and not knowing. In her essay, Kittay uses the concepts of epistemic responsibility and epistemic modesty to challenge McMahan. In other words, “Know the subject that you are using to make a philosophical point” and “know what you don’t know.” She shows how the philosophers had failed on both those fronts. She shows what she does and does not know, as a mother and carer, about the inner life of her daughter. She tells of a deep and loving relationship that is constantly surprising. In the telling, she reframes the question of moral status to rest not on the “cognitive capacities” of an individual, but on complex webs of interdependence. “Because what it is to be human,” Kittay tells the philosophers, “is not a bundle of capacities. It’s a way that you are, a way you are in the world, a way you are with another” (Kittay, 2009, p. 621). From her battlefeld in moral philosophy, Kittay is enacting what she calls an invisible labour of care. For Kittay, this means helping to shape a world that will accept, and value, her daughter Sesha. Starting with philosophy. In much of the art made at Project Art Works I also see an invisible labour of care, which helps challenge all those who presume to ‘know’ about ‘disability’.6 This unknowing is, in part, a response to fxed narratives – whether of tragedy or inspiration, where the unique personhood of an individual is stolen by their label. This unknowing is, in part, what happens when I am in the swing of things, stick in hand, making marks on a big sheet of paper on the foor – not knowing or caring what kind of diference separates me from the other people in the room. This unknowing is, in part, what watching a flm like The Not Knowing of Another did for a neurotypical viewer like me,

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as I journeyed through a favourite place, not speaking, not presuming anything to be obvious but the fact of the landscape and the people within it. I allowed myself to open with the unfolding of small intimacies in a kind of calm bafement. What I did know: the way bodies move in space, together. Carl

Carl Sexton’s mother Doreen arrived with him at the studio on Friday morning. I had already been warned by the lead facilitating artist, Rachel, to just sit down and not talk or engage when Carl entered the room. “He can hit out,” she explained. So, when he walked in, I immediately felt that slight rush of fear at the possibility of an interaction gone awry. I was standing. Doreen introduced herself, captured me with her intense green-brown eyes, and I didn’t know how to extract myself from conversation with her. Rachel intervened, “Chloe, I think you should sit down now.” Rachel told me later that Doreen used to talk and talk and talk, exhausting herself and all of them. But today, she set herself up at a desk facing a wall and started to paint and draw. Her back was facing the room, and she couldn’t see Carl out in the garden studio. Of course, she was still listening out, she told me – this is her time, but never completely hers. Rachel showed me one of Doreen’s pictures. “Doreen calls this ‘bad head’,” said Rachel. It was a very abstract doodle in paint with what now did appear to be a head exploding from the crown into lots of little droplets and lines. “Next, I want to make a ‘good head’,” Doreen explained to me. “I’m really just playing around. It’s a way for me to calm down because I’m always so alert, always observing. But I’m also thinking that this could help me in the future, to work with Carl at home, maybe to collaborate with him.” Often Doreen will turn up with a helmet on, Rachel had told me. But the day I met her she was without. She was beaming, thrilled. “It’s been a very good week,” she said. Carl spent all morning and then all afternoon in the garden studio, with hand marks on the walls, paint on the ceiling. For a little while, I sat out there beside the railway lines, on the ground next to the salt for the ice. Carl lay on his side, slowly working across a large sheet of paper, writing words out in a tiny script. He took the paper with him when he left. His mother Doreen told me, between bouts of focused work on her ‘good head’, about when Carl frst encountered Project Art Works during sessions they had ofered at his school. At the end of the sessions, they had done a little show and tell of the work. Kate looked into Doreen’s eyes and said, “There’s an artist in there.” Even then, it made such a big diference to his behaviour. School wasn’t good for Carl. People were always telling him no. He wasn’t allowed to explore, to be curious, like he is at Project Art Works. And when he was met with a no, when he couldn’t do the things he wanted to do, then he started

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Carl Sexton, Untitled, 2014, painting/collage, 151cm × 242cm.

Source: Photo courtesy the artist and Project Art Works

doing the behaviours; the challenging behaviours like hitting out. “He just wanted to be included.” “Here, they get him,” she told me. “They place the individual at the centre, fnding ways for him to communicate, without words.” *** At the end of the day, I met Carl’s sister Mel. She was in her third year of art school and collaborating with her brother for her fnal project. “But it’s always the case,” she said frankly, “that I call it collaborating even though I come up with the idea. He joins in and I make it seem as though it’s his idea too. It’s always been like that.” Her work is all about fnding diferent ways to communicate with Carl, and to communicate Carl’s experience of the world to others. “It wasn’t easy growing up,” she said. “It was so difcult not being able to speak to each other.” She has found that letting him come to her, being patient and waiting, “that’s the best way to begin to communicate with him.” The video installation she had planned for her fnal work involves a sensory wall and diferent projections of videos of things that, she thinks, Carl fnds pleasing: water swirling in a bowl, close-ups of textural images. She showed me a picture of Carl blowing the seeds of a dandelion. “He has always loved to do that, and I never really understood why,” she told me. Until she slowed down the video and watched all the little seeds foating in slow motion across the screen, from Carl’s perspective. It’s like a galaxy or a

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universe. It’s mesmerizing. And she wondered if Carl sometimes sees things like that, slowed down or zoomed in – each seed a little world for a moment. They lead I follow

Tom Lepora had been working with Carl all morning. We spoke over lunch. He was already exhausted from focusing so intently on the subtle changes in sounds and body language, looking and not looking. Before joining Project Art Works, Tom was a mental health nurse in locked wards. Everything was controlled. They had protocols and they had to follow them by the number. “And it was often punitive,” he continued. For example, if someone threw a hot drink, then hot drinks were taken away. But Tom began to wonder, “What in the environment or situation is causing someone to throw that hot drink?” At Project Art Works it’s diferent, he said. “We’re given the freedom to just respond to people, to get to know them and to build relationships over a long period of time. We can spend time with them in a space and allow them to shape the environment in a way that suits them, so that they don’t have to do behaviours. And if they do something, like hit out, then I don’t blame them, it’s not their fault. I think about what I can do diferently next time to change the situation.” When Tom works with Carl, they often do collage together. “I’ve found it’s a way of having a conversation, so that I can become involved in the process. I have a role, I cut things up.” He usually sits on the foor, at Carl’s level or lower. Often, he will play around with mirroring him, “So, if he says numbers, I will say them back. I think he likes that but then I wonder if he’s trying to say something to me and I’m just repeating what he’s saying back at him. It must be so frustrating.” Not knowing but trying to fnd out. Trying to feel his way into relationship with Carl, to attune himself to his rhythms, but always questioning the assumptions that might feed into that process. “They lead – I follow.” He told me that could sum up his approach, and the approach of Project Art Works. But then he second-guessed himself. “I try to let Carl lead. . . .” Is it, as the directors of Creative Growth studio once wrote, that “art leads the way” (Di Maria, 2015)? What would that even mean? Explain being in the moment

Part of Project Art Works’ advocacy work involves showing other people and organizations ways of working inclusively, through art, with neurodivergent people. I spoke to Martin Swan about this. Martin manages Project Art Works’ Explorers programme, which aims to place neurodivergent makers at the heart

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of mainstream culture through partnerships with various arts and social care organizations. He told me about the difculties he has communicating what they do at Project Art Works. Martin pointed to a piece of paper on a clipboard on the table next to him: “So, I’ve got this piece of paper that says that they work in the moment, and they use a thing called calm bafement, and it’s beautiful.” He sighed, continued. “ ‘Being in the moment’ is a very lyrical phrase, but it doesn’t really describe anything. . . . I think we haven’t explained ourselves properly.” If art is to be doing something – like making institutions more inclusive for neurodivergent communities, or improving their quality of life – then must what it does be clear and replicable? What space is there for indeterminacy and ambiguity when art is recruited to serve a purpose? Is it precisely in this indeterminacy that the ‘doing something’ happens? Or, if we argue that perhaps there is a kind of pragmatic precision missing from Project Art Works’ radical agenda, then how might they explain themselves properly? Is it my task to explain? And if so, am I helping or hindering? Bit of both probably, as it mostly is. Paul: III

At some point in 2019, before I had yet met her son, Kate Adams shared a document with me titled ‘THE NOT KNOWING OF ANOTHER Observations of a walk by Paul Colley from flm’.7 The observations, this document notes, were made by Triangle, a specialist psychology support provision based in Brighton. Their aim was to describe what was happening for Paul, “without imposing neurotypical meaning and/or interpretation on his experience.” The text is written in second person, addressed to Paul, who is ‘you’. The text alternates between descriptions starting with ‘your camera’ and ‘you being flmed’. They write things like: You stop walking and stand still, you raise your arms and your hands upwards, you clap and rock, you make some noises/sounds. And: You look down and up, the rocks and stones are down and the sea is up and ahead. And: K[ate] ofers you her hand that you take. Only once does the writer break their anonymity, using frst person, in the second last paragraph. YOUR CAMERA: I can hear your heartbeat steadily. I am reminded of Mary Oliver: attention without feeling is only a report. I want to follow where they are headed: away from interpretation, towards knowing through noticing. But something is missing in the psychologists’ report. It shows without telling for sure. But it lacks a lyricism that would be necessary to fully do justice to its subject.

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Looking at the sky

Once, I asked my mum to read some notes I had been accruing about Project Art Works and not knowing and theory of mind and calm bafement and the kind of knowing that is attuned to the movements of a child through a landscape or the movement of paint over hands. Mum was sitting out in the garden with my three-year-old son Louis, who was feeding bits of grass to the chickens, and my seven-month-old daughter Edie, who was lying on a big quilt that mum had patched for me a month or so before. I tried to explain to mum what the notes were for and about. She told me she had just been lying with Louis, on their backs on the quilt, looking up at the sky, so that they could see the world like Edie sees it. And that they were just looking at the sky, being with each other, nothing more than that, but there’s nothing more complex than that. And isn’t that partly what I’m trying to say? The remains of something

At frst, I  had titled this section ‘A proposition’, because that was a word I heard many times, from many diferent Project Art Works staf. The artwork is a proposition, I was told. The whole process of making involves setting up propositions, artistic propositions, that the participant can then respond to, or not, in their own way. I digressed into metaphor about the linguistic operation a proposition might perform. I think what they meant, when they used that word, is that each encounter, whether under the railway arches in Hastings, or in a white-walled gallery, involves ofering something of yourself to another person through the materials at hand – paint, charcoal, cardboard, canvas, string. And through that, fnding something of that other person. Annis, one of the Project Art Works staf, explained to me, “We’re in a room with people, as artists, as equals, exploring something together, and seeing where that goes.” For example, over many years she has worked with a woman called Claire. Annis and other staf artists try to fnd a way to document what Claire’s experience of being in the studio is like, often through installations that gradually accumulate around her. “It’s documenting the engagement,” another staf artist, Sara, jumped in. “It’s documenting the remains of something . . . an activity is not quite the right word.” She searched for the right word and found it with glee, “the evidence! It’s evidence of the essence of an interaction, or an engagement, in its full – not just a smudge that’s been left, but hopefully something that captures . . . however energetic it was, or however intimate it was.” “It’s about relationships,” Annis added. With Claire, this has involved working out slowly, together, the momentum of their mark making. “Claire

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doesn’t like getting messy, but she will hold onto your arm while you make movements, and she will remove her hand when she doesn’t want to make a mark. We’ve developed that together over time.” One day, Claire seemed to realize that by pressing lightly on Annis’ hand, she could make a slight movement, they could make a slight movement together. “I was holding her, and I said ‘press when you want to make a mark, and push, push my hand.’ I felt her move. And I’d try to respond, [through] how far I  let my hand drop. I tried to respond to the pressure, to that sense of pressure she put on my hand.” This was a simple change in their relationship, their way of working together, that gave Claire more control. Simple, but “it can be a kind of break through.” Sara agreed, in everything that they do, “the connection between the artist and the participant, or maker, ends up being a starting point or a catalyst.” Back to brown

There is a fne line between facilitation and intervention or interference. Tony, for example, said that sometimes it would be necessary for him to intervene in a ‘student’s’ practice, if it would help them overcome a stumbling block. Other Project Art Works staf members Annis, Sara, and Anne-Marie told me about moments when they resisted their natural inclination to stop someone from taking their own path. Often this would turn out for the best – an artist making a much better painting from following their own vision, despite the risks (e.g., of causing an image to disappear into black). Annis explained, “If the image had been destroyed it wouldn’t have mattered either. Because what was important was that she made the choice.” Sara responded, “Yes absolutely it is about choice, but sometimes it’s not so easy . . . It’s also about identifying if that is a choice that has been made.” She has worked with many people who, if given many pots of paint at the same time, would pour them all on, not allowing them to dry. They would end up with a sludgy mess. But if the paint is allowed to dry between layers, you’ve got a completely diferent piece of work, even though the process is almost the same. “So,” Anne-Marie tried to clarify, “if you’ve got seven colours in front of you, was the choice to put them all on at the same time? Or was that just because all those paints were there?” “Yes,” Sara said, “and is that moment of putting all those paints together on one painting and making a brown painting more important than layering them and having a completely diferent looking painting at the end of it? And who’s that for? Is that for the [staf] artist, because its more satisfying aesthetically? . . . It’s about untangling the choice.” In this work, each artist must interrogate their inclination to judge a process in terms of some sort of fnished thing. At the same time, they must value the fnished thing, and enable people to create things that can be valued by others. ***

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Carl will often put his work in the bin. Rachel laughed quietly, “It’s interesting watching people try and retrieve it, take it out – because it is beautiful.” But that is a very important decision for Carl to make, to put his work in the bin. “And you need to keep it in there,” Rachel said. “It’s important to reject work, and if somebody chooses not to continue with work, that’s something we need to honour and uphold.” On the other hand, it is so hard to know when things are fnished. The staf artist might think, “Woah, look at the colours, look at the composition on that, that’s beautiful. But always remember: this is just our perception, is it relevant to them?” “What role does beauty play in what happens?” I asked Rachel. She didn’t have to think, “The absolute beauty of it are the interactions. And it just so happens that art is used as a mediator to enable these meaningful relationships to happen.” *** At the Museum of Contemporary Art in Sydney, I worked closely with their Access Manager Susannah Thorne as she and her team collaborated with Project Art Works to bring their work to the museum.

FIGURE 4.7

Project Art Works bin, 2019.

Source: Photo: Chloe Watfern

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Project Art Works, she said to me, seems to be pursuing a kind of art activism – they seem very passionate about this idea that their art, art by neurodivergent people, should be exhibited in mainstream gallery spaces, be valued, and recognized. Susannah confded in me that she doesn’t care so much about that side of things; her agenda is much more aligned with the other facets of Project Art Works’ activism. For Susannah, this means a slow infltration into the institution, a slow building of community, a democratization – to make sure that everyone feels comfortable accessing the museum. And everyone is not an artist, they might not want to be, they might not care at all about that. They might just want to be a part of art, to be a part of an art community. For example, she told me about a woman she works with every week at a local disability service provider. This woman makes the most beautiful pieces, she told me, and at the end of the session Susannah often feels an urge to hold on to them, to put them up on a wall, for example. But the woman obviously doesn’t care about the fnished products. She will generally just sweep them of the table and straight into a bin. For her, being an artist isn’t important. What’s important to her is the process of making. I felt as though I could have been speaking to one of the staf at Project Art Works. And I realized that this is the advocacy work that is needed – to expand our conception of what art is and does, and what it means to be an artist, that it is not simply about art objects being exhibited in places of high culture, although this is a part of the work that must be done. I think of Joseph Beuys’ mantra that everyone is an artist, a mantra that Project Art Works have whole-heartedly adopted. I return to something Rachel told me, at the end of a long day in the studio: “We always talk about the fact that fundamentally everything will revert back to brown, these tertiaries. But tertiaries are the mud of life, and eventually it will all mix back into something.” What I know

I know that at Project Art Works there are many people who have come to know each other, often over the course of many years. I know that for neurotypical collaborators, this involves paying careful attention. It involves becoming attuned to the non-verbal, to the small movements of a hand, to the 5mm between a body and a wall, to the nature of each mark. Perhaps I do not know what Paul was thinking or feeling while he was looking at those pictures of Kate. It’s true, I didn’t know how to ask him. But I can imagine. Notes 1 A version of this section, ‘A flm’, and portions of subsequent sections, ‘What she knows’ and ‘Knowing, not knowing’, were published in a book chapter (Adams, Boue, & Watfern, 2022) and are reproduced here with the kind of permission of Bloomsbury Publishing Plc.

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2 These days, Project Art Works conducts a lot of outreach with external arts and community organizations, often in the form of ‘encounters’ between people with and without disability – showing neurotypical people how to be calm and bafed, allowing fear and prejudice and awkwardness to dissolve in the doing. A staf member told me that “on the awareness days, we are most focused on managing neurotypical participants’ fear, particularly about not knowing how to respond. It can be traumatic for them, people who have never encountered others in that way before.” 3 In an earlier draft, I wrote ‘taught canvas’. My writing mentor Mark corrected me, “Taut. But the idea of a canvas that teaches, in which lessons are taught, is beautiful. A Freudian slip, Chloe?” 4 Tony told me that the process of systematically documenting everything stood Kate in good stead when she went back to study a Master of Sequential Design and Illustration. She had already developed a very solid practice of diligently documenting and refecting – a refective practice. “It’s this refective practice that I see ingrained into the fabric of Project Art Works,” Tony told me. “Systematic recording as a discipline.” It’s something he also does in his work with the organization. Tony keeps a meticulous weekly record of the work of each artist he mentors, and how it has progressed. He writes in pencil in a small, elegant cursive script. He was on to his twelfth book on the day I sat with him. It was half full, each week marked with a diferent coloured tab. He learned to do this with Paul, but also as a lecturer and art teacher, it was how he was taught to teach – to keep a record of his student’s work, to inform his own judgements and report writing. At Project Art Works there has been another component to these diaries – to present a record to social care funding bodies of the service he has provided to the artists. I asked to look at his fne pale words. I saw an entry about the artist Michelle Roberts. It stated simply what she had done that day – adding to line drawings of Lady Gaga and Madonna on a 2m x 3m canvas. But Tony also made a formal comment, about how her forms bustle together on the picture plane, almost tessellating. Another artist facilitator, Rachel, also described her “refective practice, where you’re constantly questioning yourself to be able to meet the needs of those you work with. Because you can never second guess or presume about what people want or need, ever.” 5 Paul’s support team also records video. In 2019, at the time of one of my conversations with Kate, Paul had nine support workers. His team had been working through the process of teeth cleaning. Each person supporting him to clean his teeth had a camera on the wall, flming them. Then, they compared notes. “This is really important for Paul,” Kate explained. “If you’ve got diferent people helping you to clean your teeth, or doing it for you, they’re all going to do it in a diferent way, and that is a real pain. The whole experience of being looked after can be just a nightmare in that respect. Video refection is really important because it is very objective.” 6 Reading Kittay (and other thinkers who have written of disability), Simplican (2017) writes of “the importance of challenging subjects who confdently ‘know’ about ‘disability’, as though it could be a thoroughly comprehended object of knowledge” (p. 54). 7 This text formed part of the guide to The Not Knowing of Another installation when it was exhibited at De La Warr Pavilion in 2008.

References Adams, K. (2004). New years day. UK: Project Art Works. Available online: https:// vimeo.com/385448644 Adams, K. (2008). The not knowing of another. UK: Project Art Works. Available online: https://vimeo.com/246994674

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Adams, K., Boue, S., & Watfern, C. (2022). Being together in a neurodiverse world: Exploring with Project Art Works. In J. Bennett (Ed.), The big anxiety: Taking care of mental health in times of crisis. London: Bloomsbury. Avramides, A. (2019). Other minds. Stanford Encyclopedia of Philosophy. Retrieved from https://plato.stanford.edu/entries/other-minds/ Baron-Cohen, S. (1997). Mindblindness: An essay on autism and theory of mind. Cambridge, MA: MIT Press. Bos, G., & Abma, T. (2021). Putting down verbal and cognitive weaponry: The need for ‘experimental-relational spaces of encounter’ between people with and without severe intellectual disabilities. Disability & Society, 1–25. doi:10.1080/09687599. 2021.1899896 Chodron, P. (2018). Comfortable with uncertainty: 108 Teachings on cultivating fearlessness and compassion. Boulder, CO: Shambhala Publications. Costall, A., & Leudar, I. (2004). Where is the ‘theory’ in theory of mind? Theory & Psychology, 14(5), 623–646. doi:10.1177/0959354304046176 Costall, A., & Leudar, I. (2007). Getting over “the problem of other minds”: Communication in context. Infant Behavior and Development, 30(2), 289–295. doi:10.1016/j.infbeh.2007.02.001 Di Maria, T. (Ed.) (2015). The Creative Growth book: From the outside to the inside: Artists with disabilities today. Milan: 5 Continents. Dufy, J., & Dorner, R. (2011). The pathos of “mindblindness”: Autism, science, and sadness in “theory of mind” narratives. Journal of Literary & Cultural Disability Studies, 5(2), 201–215, 227. doi:10.3828/jlcds.2011.16 Kittay, E. F. (2009). The personal is philosophical is political: A  philosopher and mother of a cognitively disabled person sends notes from the battlefeld. Metaphilosophy, 40(3–4), 606–627. doi:10.1111/j.1467-9973.2009.01600.x Kötting, A. (2002). Mapping perception: In hindsight a refection. Retrieved from www.andrewkotting.com/ak%20web/mapping.html Kötting, A. (2011). INSIDEOUT ART and the Wednesday Mentoring Group. Retrieved from www.andrewkotting.com/ak%20web/insideoutart.html Kötting, A. (2012). An outroduction for a publication by Project Art Works: Insideout art. Retrieved from www.andrewkotting.com/ak%20web/insideoutartoutro Leong, D.-J. (2016). Scheherazade’s Sea – autism, parallel embodiment and elemental empathy. (PhD). University of New South Wales. McMahan, J. (1996). Cognitive disability, misfortune, and justice. Philosophy & Public Afairs, 25(1), 3–35. doi:10.1111/j.1088-4963.1996.tb00074.x Meltzof, A. N. (2011). Imitation as a mechanism of social cognition: Origins of empathy, theory of mind, and the representation of action. In U. Goswamu (Ed.), Blackwell handbook of childhood cognitive development (2nd ed., pp. 49–75). John Wiley & Sons. Milton, D. E. M. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & Society, 27(6), 883–887. doi:10.1080/09687599.2012.710008 Pfeifer, J. H., & Dapretto, M. (2011). “Mirror, mirror, in my mind”: Empathy, interpersonal competence, and the mirror neuron system. In J. Decety  & W. J. Ickes (Eds.), The social neuroscience of empathy. Cambridge MA; London: MIT Press. Rughani, P. (2012). The art of not knowing. In K. Adams & P. Shaw (Eds.), Anthology: Project Art Works 1997–2012. Hastings: Project Art Works. Simplican, S. C. (2017). Feminist disability studies as methodology: Life-writing and the abled/disabled binary. Feminist Review, 115(1), 46–60.

5 THOM ROBERTS Making together

Making

The artist Ann Hamilton’s (2009) words have become a kind of mantra for me as I have written this thing, this book, about the makings of others, and as I come to terms with my own urge to make: “Every act of making matters. How we make matters” (p. 71). Thanks to her I turned to the seventeen pages for ‘making’ in the Oxford English Dictionary. There are fve entries: two verbs, two nouns, and an adjective. I turned to the frst verb, whose Indo-European base had the sense “to knead, work with the hands”. The Germanic verb is related to an adjective meaning “ft, suitable”, perhaps via the sense “that which can be done”. To make can mean to bring into existence, to produce, to give a certain form to a portion of matter, to form by the collection of individuals, to go on (e.g., a journey). Then we can also: make the time, make a baby, make believe, make a hole, a mark, a sound, make history, make an example of, make the best (also most, worst) of, make it so, until . . . one’s mind is made up. Ann Hamilton, again, asks, “Can I  really believe .  .  . that all the collective acts of making carry a weight that can counter the acts of unmaking that accrue daily” (p. 70)? We unmake when we forget the many ways of being and doing, instead focusing on what can and has been produced – the thing that is made rather than the act of making. If art is for anything, then it is for this: to remind us of our power to make the world, to remind us that every act of making matters, to remind us that

DOI: 10.4324/9781003466703-5

Thom Roberts: Making together

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Thom Roberts, Kermit the Frog, 2020, acrylic on paper, 29.5cm × 21cm.

Source: Photo courtesy the artist and Studio A

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we can be verbs and nouns. Thom has reminded me of these things often. I have made with him, made alongside him, to learn more about the kind of making he does daily. I have also learned about other people who have had this privilege. An animation

At Studio A, I put my hand up to sit in and help, if I could, at the new digital art programme on Mondays, led by Kermit (a.k.a. Christopher Haysom), who has a background in flm and photography. I  know my way around Photoshop and have a basic grasp of flm editing and animation software, although I was in for a big learning curve. I quickly found myself making a stop-frame animation with Thom – taking the photos while Thom moved his drawings around. Click click click. Dog, cat, mouse, lion, bear, alien elephant. All with lots of eyes and mouths that got moved around and switched over. “Thom’s way.” The mouths and eyes opened and closed. The eyes rolled around and around. The heads wobbled. The dog and cat and mouse and lion and bear and alien elephant had been drawn onto paper, then cut out and stuck with blue tac onto a bigger sheet, which became more and more crinkled as the shoot progressed. The blue tac left marks. There were smudges all over the white. “Thom cat moves the head straight again,” Thom narrated. “Do you like your photocopies Thom? Do you like the photocopier? You can go in and do them if you like, I don’t mind.” Some wishful thinking. Locomotive reproduction

Thom’s art is forever expanding into the space around him. One day I counted three-and-a-half tables out of eight that he had occupied in some way or other with his proliferating content. Trains everywhere. But that morning we worked on buses. Diferent colours of buses, with diferent colours of eyes. On the computer, we made the buses move back and forth across the screen. Inevitably, we realized – or remembered – that trains are the thing; trains are what Thom really wanted to make move. He wanted to make them go to the diferent stations on the city circle and pick people up: Shanghai (Central), Christmas (Town Hall), Easter (Wynyard), Cloud Heaven (Circular Quay). Thom had been drawing the stations and he had been drawing trains. More and more of them appeared on the surfaces around us. Trains with faces, faces

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Thom Roberts, Easter Station, 2019, screen shot from work in progress for augmented reality animation in Thom Roberts, City Circle Line, 2019.

with faces, trains with trains. Photocopies upon photocopies, folded then sticky-taped then folded then moved about. Not long after that, I began noticing Thom everywhere I looked at Studio A. On top of the fridge: a face photocopied forty times and folded under a stack of consent forms for an excursion. Next to the photocopier: a monster hiding in the scrap paper. I picked it up and looked at it hard, my nose almost brushing up against the bulging curve at its top. Then I put it back down and went home for the day. ***

Walter Benjamin (1935/1969) once wrote about the aura of a work of art – something that “withers” in the age of mechanical reproduction. To explain what he means by aura he turns to natural objects, like a branch above your head when you are lying on the grass looking up, or a mountain on the horizon. Their aura, he writes, is “the unique phenomenon of a distance, however close it may be” (p. 5). Nevertheless, “every day the urge grows stronger to get hold of an object at very close range by way of its likeness, its reproduction.” Elsewhere, Michael Taussig (2011) writes: “Why bother? What is the need here – the need to grasp the object as an image at close distance?” (p. 7). Elsewhere, Maggie Nelson (2017) writes: “The most I want to do is show you the end of my index fnger. Its muteness” (p. 5).

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FIGURE 5.3

Thom Roberts, Untitled (Positive & Negative), 2018, acrylic and textile on canvas, 50cm × 50cm.

Source: Photo courtesy the artist and Studio A

Hairdryers and photocopiers

Thom is always doing something interesting. For example, the hairdryer “died,” and Woody (a.k.a. Emma Johnston) asked if someone wanted to say a few words for it. Thom stood from his corner, hands beside lips, and said “good-bye hairdryer. It was nice to know you. I will see you in heaven.” Another day. It was Kylie Madonna’s (a.k.a. Gabrielle Mordy’s) mother’s birthday. Sue volunteers at the studio on a Wednesday. Thom brought out a birthday cake alight with candles. Kylie Madonna asked him if he would start the singing. Thom sang: Sad birthday to you, Mad birthday to you, Surprise birthday to you. Everyone was in hysterics. Then, they asked Thom what Sue should wish for. Thom thought for a while, screwed up his eyes, and said, “photocopiers”.

Thom Roberts: Making together

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Thom Roberts, Cloud Heaven, 2019, drawing on paper for augmented reality animation.

Source: Photo courtesy the artist and Studio A

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Thom Roberts, 1983, 2019, pencil on paper, 21cm × 29.5cm.

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Fragment of fridge

Another day, Thom got straight to work tracing a picture of Cloud Heaven, with the harbour fridge just visible in the background. Then, he drew a little section of the bridge on another piece of A4 paper, with the number 1983 above it. In 1983, when Thom was six years old, he was living in an apartment in North Sydney. From the balcony, he could see a little fragment of the Harbour Bridge. When I asked him about the drawing, he told me the following story. In his typical manner, he was loud as hell, pausing at key moments for theatrical suspense, hands placed frmly at either side of his mouth to accentuate important details. “This is in history, a long time ago,” he began. “I think Thom, well, in that day I was trying to get ready to go to Cromehurst School, in the morning. And I ran away from Kennedy. And I ran around that corner, up that balcony in 1983, and I saw a bit of that bridge. And that was my driver, she said to Kennedy, ‘where is that Thom gone to?’ . . . Now what could happen if Thom runs all that way?” “Runs all the way where?” I asked. “And get the train from North Sydney to Wynyard. Get of and change trains to go to Cloud Heaven to look for Woody Tiger, my staf teacher, when she was little. And there was Kennedy! She told my taxi driver, ‘where is that naughty Thom gone to? He’s gonna be in big trouble.’ They could have rung the police. Oh no! That could really happen, but I  didn’t do it. I  was very lucky. Big trouble from Kennedy. There you are. That’s the story. Yep.” I read it back to Thom, and he cracked himself up laughing. “Let’s ask Woody to come and see this. Send it to Woody Tiger.” “What do you want me to tell Woody?” I asked. “About my history in 1983. And, can you write this down?” I wrote this down: “When Kennedy picked Thom up from Cromehurst school, I  think we drove all the way down to cross that harbour fridge. Drove all that way, to get Maccas and went to Mittagong to pick up my sister and drove all the way down through Kangaroo Valley, up that mountain Cambewarra and drove all the way down through Bomaderry and down to Nowra, down that road down on the Island to see my Buddy Brown Boy [his dad]. That was on Friday night, Saturday night and Sunday night. On Monday morning I think we packed up and left the Brown house. Drove. I think we left the Island back up to Nowra, back up mountain Cambewarra, and I saw all this fog down in Kangaroo Valley and drove back up to drop of my sister at

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Thom Roberts, Magic Robot Machine, 2020, acrylic and ink on cardboard with AR Animation, 30sec loop.

Source: Photo courtesy the artist and Studio A

school. I call her Marge. And then after that we stopped at a garage to get an ice block. That’s when Kennedy bought me an ice block many years ago, in 1983 it was, and after that I think we had Maccas for breakfast and after that Kennedy drove Thom to Cromehurst school at Lindfeld to drop me of . . . And that’s when Woody was a baby. It’s a part of my life.” He told me and I wrote it down and I sent it to Woody.1 Just a little fragment of the harbour fridge. But it opened a part of Thom’s life to me: a six-year-old seeing escape, and a journey to the island where he grew up, and quite a bit of Maccas.

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Art bank

Much later, I would see that fragment of bridge again, in an augmented reality animation. It was a work Thom had made for an organization called Artbank. He made an art bank: A robot face that spat out artwork from its green rectangular mouth when I held my phone up to it with a particular app open. The robot face spoke, in Thom Roberts’ voice: “I have got ten hundred thousands of art works inside of me and I am going to spit them all out. Shall we do it right now guys? . . . Beep beep, err, beep beep, here.” Out came a picture that said ITALY in big caps above what could be a city scene with views onto the angular rooftops of somewhere like Venice (where Thom went to see the Biennale in October 2019). “Do you love it?” Thom’s voice continued. “I really love this one.” Out came a picture of a black circle with a smaller circle at its centre overlaid onto prisms in purple and orange and green and brown and pink. Under the circle, a little bar graph: 3, 2, 1, 0. “And this one. Thank you for painting me out Thom Roberts.” This one said ‘1983’. And there was the harbour fridge, but it looked like the wheel of a car, and there were lots of colourful lines leading onto it and away from it and over in one corner was maybe a building upside down. “I  have got ten hundred thousands of art works inside of me and I  am going to spit them all out.” Tim Tams at Kennedy’s

I walked along the path that made its way through dry lawn, then up a small fight of steps. I opened the screen door of a red brick house on a biggish block in the middle of one of the less green suburbs of northern Sydney. Kennedy (a.k.a. Nancy) was in her mid-eighties. Short white hair, red shirt. A portly King Charles Spaniel named Bo preceded her – Thom’s mum, the adopted mother of Robert Thom Smith Roberts Tim Tams. I brought Tim Tams for morning tea. Kennedy made us instant cofees with sugar, and I took some milk. I told her when. I looked around. There were two mini toy trains hiding in a corner of the kitchen, where it opened into the living room. There were lots of pictures on the walls, most of them reproductions of masters: two Vermeers hung very low near the television, below three pictures that I soon found out were Thom’s. *** Thom Roberts grew up on an island in the mouth of the Shoalhaven, a few hours south of Sydney. As a four-year-old, he was already way ahead of his peers with his colour. Or, as Kennedy described it, “with what his colour did”. They used to get out big white sheets of butcher’s paper. The things Thom would draw, Kennedy remembered, were just like those stone faces on Easter Island. She asked her husband, back then, “How does he know about them?”

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Thom Roberts, Baby Bo, 2018, acrylic on canvas, 2020, 46cm × 40cm.

Source: Photo courtesy the artist and Studio A

Eventually they all moved up to Sydney so Thom could go to school. By that point they’d been through three or four psychiatrists. Thom started at one school, but it wasn’t a good ft. He ended up at Cromehurst in Lindfeld, where he could receive extra support. One day, Kennedy went in to pick Thom up from school. He had done a painting of a bridge at night. It was very dark. Before they left, Thom had dipped his fngers into some yellow paint and slapped them all around the painting. Kennedy was horrifed, she thought he had ruined the picture. But

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then she realized he had made highlights. “It was another thing that opened my eyes,” she told me. “It struck me then that there’s more here than I know . . . that there’s defnitely something in that head of his.” Kennedy chuckled. Bo fopped into my scratching hands as I perched on the sofa in the living room. Thom Roberts’ head appeared around the corner of the corridor leading between living room and kitchen. “Hello Thom Roberts,” I said. “Hello Zoe.” Kennedy continued with her story of Thom’s life. When Thom left school, he was in a sheltered workshop, but he didn’t like it much and was in trouble all the time. So, Kennedy enrolled him at a TAFE (technical and further education) in an evening school art class, but the teacher didn’t know how to handle him either. They put Kennedy on to Studio Artes. It took me a while to realize that I was hearing it again – the Story. That Big Story in Thom Roberts’ (a.k.a. Robert Hamilton Smith’s) life: “I was at the station when the fuzz caught me red-handed.” But that’s not how it started. That’s not how the story started that day. Kennedy started the story, and Thom helped sometimes. Like, he told her that the transit police got him at Town Hall Station. “I call it Christmas station,” he said. “You can come out here and talk to us, you don’t have to hide behind there,” she beckoned Thom over from where he had been standing in the darkened corridor. “And his bags were stolen,” she turned back to me. “My bags were being thiefed. My bag got stolen,” he said. “So, I brought him down to Ottenham, which is another sheltered workshop run by St Vincent De Pauls. They’d take him in straight away. But you were naughty there, weren’t you?” “Yep. Yep.” “We don’t need to know how naughty . . . and that’s going back a long time ago, you wouldn’t do anything stupid like that now would you?” “No.” Because now Thom goes to the studio. Because now Thom doesn’t have to mow lawns or count plungers and nails and screws or put airline headphones in plastic bags. Because now Thom makes art for a living. Because now Thom is the person at the centre of the room, heckling and singing and showing everyone up. He’s not on the perimeter anymore. And now Thom makes art that gets seen. He makes art on billboards and scafolds and riverbanks and train stations and canvases and tables. He makes art as a way of life. And some of the evidence of that is in his bedroom. Kennedy is clearly proud of her son’s talent, but perhaps doesn’t quite see the talent that manifests itself in the installation that is his room, towards

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which she rolled her eyes as we peered in. “I try to make sure we go through it once a month,” she told me. Later, Thom told me they do ‘recycling’. They clear out all these large coffee cups he keeps bringing home from lunch – stacked and taped into towers that rise from the top of his bookshelf. Not to mention the piles of photocopies on the table beside the mini box of a TV, playing static when I frst walked in, then a blue blank screen and a few streaked hand marks – from Thom moving his fngers across the surface? I experienced Thom’s room as an art installation. I’ve been to enough white cubes where a room flled with the everyday contents of a life are the display. And there, in Thom’s room, each object sits in relation to the others – has been placed for a reason – seems ‘made’. I suppose the same could be said for most bedrooms (we make our beds after all). What I mean to say is that I saw everything in Thom’s room as art. And this means I  valued it. Perhaps I  also set it apart from myself in some way. I observed Thom’s room with keen interest but as though it was an object to be studied. But I was studying with Thom and his room. So, I told myself: resist the temptation to analyse. And resist the temptation to romanticize this creative drive that animates Thom’s interactions with the world. Be with Thom and his room. That is enough. Let Thom teach you what is going on here. We hung out in there for a long time. We listened to cassettes Thom had overdubbed with his own lyrics – stories about red gloves and purple shoes on the railway tracks. His ‘free time tapings’ or ‘free time artwork’. His taped over tapes.

FIGURE 5.8

Cofee cup towers and a painting in Thom’s room, 2019.

Source: Photo: Chloe Watfern

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‘Dream a little dream’ came on. Taped over Thom sang over the top about ‘dark purple hats on those railroad tracks’. Thom in the room with me sang: “Dark purple hats, and blue gloves, yep. It’s a song about put on your red shoes. And I say put on your blue gloves, put on your dark purple hat.” The two Thoms were in chorus. Meanwhile, Thom in the room was also in the middle of telling me the story of how he stole tapes from his music teacher, back at school. Tapes like ‘Rock around the Clock’. Meanwhile, Thom in the room was giggling and so was I and so was the recording of Thom. The dark purple hat and blue gloves story continued over the top of songs as we continued to play through the tape: Shocking Blue, Tom Waits, Outkast. Next, Thom showed me four big permanent markers that were sitting on his bookshelf – two red, two blue – and with great focus took a piece of paper and drew two thick lines, held the paper up, moved it back and forth, then showed me how the line can be thin too. “I’ve got new marking pens,” he told me. “Blues and reds. Here, look, you can do thin ones too by the way. Here, look, can you see the diference? Look.” I looked. Next, I  watched Thom as he ficked through a real estate magazine and drew over pictures with his markers. I could have watched Thom fick through magazines for days. He drew two faces, his and Kennedy’s, in front of some houses. He found a mirror and used it to double the faces. Four faces in front of houses in refection. Next, Thom showed me the two fans on his desk, each with three blades, painted blue. At Thom’s school, he told me, Cromehurst in Lindfeld, there were plenty of fans, “three in one classroom, one in the staf ofce, another one over in the college – that used to be an art room but many, many years ago. And they were this colour.” He gestured to his fans. “And we had two fans in the kitchen. But they were diferent. One was four bladed and one was threebladed. One was green and there was a yellow one. They were in the kitchen.” I found out later that underneath the house, Thom has a collection of fans. Three blades, four blades, two. I didn’t get to see them. *** In his essay ‘Using Things as Art’ Darren Hudson Hick (2019) writes about the artefacts and natural objects – an antique apple peeler, a collection of rocks  – that he and his wife use as art. They sit on shelves in their house. Occasionally, they will look deeply and closely at them, admiring their forms. “At frst pass,” he writes, “to use something as art in the sense that I am using the phrase is to employ that thing as an object of a certain sort of focused engagement” (p. 61). In other words, a kind of attention that is often described as ‘aesthetic’. Later, he continues, “To use something as art is to pull it from the background into the foreground, from the domain of the mundane to that of the

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sacred. It is for reasons of highlighting this position that we put things in frames and on pedestals” (p. 66). Perhaps I  am using Thom’s room as art. Perhaps he is using the things within it as art – fan, cups, tapes. He is using them to make art. ***

FIGURE 5.9

Thom Roberts, Blades of Fan, 2020, oil pastel, gouache, and acrylic on paper, 35cm × 27cm.

Source: Photo courtesy the artist and Studio A

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FIGURE 5.10

A marked up calendar and a wall in Thom’s room, 2019.

Source: Photos: Chloe Watfern

I wanted to archive Thom’s room. I wanted to take time-lapse photographs of the cofee cup cityscapes rising and falling with the cycle of recycling bin nights. I wanted to digitize the taped-over tapes. I wanted to scan each page of his marked-up calendar. But all I did was take a few photographs with my smart phone. Before I left, I spoke again to Kennedy. She told me she wishes she’d kept a record of all Thom’s early paintings. She gestured towards the ones on her living room wall. “He did a whole lot more and I honestly wish I could have bought the lot. I wish I’d even photographed them. But I didn’t.” She showed me Thom’s memory box: old report cards, newsletters from Studio Artes, photos from Thom’s Christening after his adoption (he was a baby, three months old), a Christmas hat and stocking, a running medal, sports awards, photos of Thom as a toddler and as a boy, a ballooning certifcate from a trip the family went on in 1992. I read a report out loud from ffth form: “Robby’s art has developed in style over the year, he is expanding his subject matter and concentrates very well, being most attentive. Robby has a fast free-fowing sketching style which can be used in the future to complement his written and oral language development in the classroom.”

Thom Roberts: Making together

FIGURE 5.11

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Items from Thom’s memory box.

Source: Photo: Chloe Watfern

Before I left, I asked Kennedy about something she had told me earlier, at a Studio A Christmas party. We were sitting in Thom’s corner, in front of his portraits in progress for a major art commission. She told me then that Thom has three separate lives – at home, at Studio A, and at Studio Artes. He makes sure he keeps each of them self-contained, she said. For example, Thom never paints at home. “So, do you think Thom makes any art at home?” I asked naively, as I fumbled with my bag. “Well, you’ve seen his room,” she replied. “He builds buildings and then he draws on everything. But no art, no art of that kind, no. It’s diferent.” “But he’s making things?” “Well, you’ve seen his room,” she repeated. Photocopier conversations

Another day, standing in front of the photocopier at Studio A, Thom talked me through his week. “Today is Wednesday,” he told me. “Tomorrow is Thursday. On Friday I am back to this again. I come here every Monday, Tuesday, Wednesday, Friday. Studio, Thursdays.”

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“Studio where?” “Hornsby, I call it Dinosaur Town.” “Oh! And what do you do on Thursday?” Thom leant a bit closer, whispered, “same thing.” *** It turns out that the photocopiers at Studio A and Studio Artes, in Thom’s worldview, are married. It turns out that the bookkeeper at Studio A is called Photocopier. “I want to make paper come out of her mouth,” Thom told me once. Crowded people

“You know what I might write another story here,” Thom declared to me one day. He told me a story and I thought it a poem, so I made it a poem. I don’t like crowds of people. I like less people. So, I say, “oh, I think I’ll call this train Dark Carpet Grey Black Jumbo Jetty.” That’s what I call it. Then I let it go. I wait for the next one, and I say, “here comes a Brown Alf.” That’s what I call it. But this train is still crowded. There it goes. And I wait for the next one. And I say, “less crowds now, less crowded.” And I say, “here comes Pink Burt.” Still less crowds. Oh, but I think I’ll catch the next one. There it goes. And this is less people now. Oh, here comes a nice Yellow Ernie. This Yellow Ernie stops and I get on it. Oh I caught a nice Yellow Ernie. All of the crowded people have gone straight to work in the city. That’s the ones I don’t like catching. I wait for the less crowded ones to arrive. Thom and Angelmouse

In the digital print ‘Best Friends Going Through a Tunnel’ by Thom and Angelmouse, their faces are trains hurtling down tunnels, becoming further

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and further away with every photocopy, every photograph.2 The Studio A carpet is there behind their heads if you know to look for it – a nondescript combination of greys that makes a tiny meshwork only visible from close-up. To arrive at an image or artwork, they did a lot of storytelling. For example, before they made this one, Thom came into the studio on a Saturday talking about how Thom and Angelmouse have been friends forever, like Bert and Ernie. Then they went looking for photos of Bert and Ernie. Then they kept chatting about what if they’d been friends when they were babies. They found pictures of themselves when they were babies. And then they put them all together – the pictures, the stories – into something that is, in this case, “basically a visualisation of our collaboration”, Angelmouse explained. Best friends going through a tunnel. When Angelmouse fnished her masters at art school, she was thinking about what the hell she should do next. She went and volunteered at Studio A. On the frst day, she was asked to assist Thom with his work. She didn’t know how to do that. “I didn’t understand what the assist word meant, because he was making in a way that was perfectly incredible. . . . So, I just kept coming every week.” Because she wasn’t paid, because she was a volunteer, she never felt any pressure or expectation around how their relationship needed to be. “Money brings a hierarchy,” she said. Without money involved, she felt more like a visitor than an employee. She would sit with Thom in his studio, watching and learning from him. They would chat. She began to decipher his way of being in the world, and the words he used to describe things. Their friendship deepened. One day, Thom needed help using an iPad to animate his drawings. Angelmouse stepped in. She found herself making suggestions. This felt, to Angelmouse, more like a collaboration than simply assisting. For Angelmouse, her relationship with Thom was also like a mentorship. She feels like Thom mentored her. She learned so much from him and from being around him. She had never had any experience of disability before. He introduced her to a new world of art and of making. He introduced her to the possibilities of making in a socially engaged kind of way. I love this way of framing their relationship. I too want to fip the trope of the supported artist with disability, always being mentored by others. Of course, Studio A  was also a part of the mentorship that Angelmouse received from Thom. For one, they enabled Thom and Angelmouse to spend so much time together and helped create a space in which they could rif of each other. Angelmouse described this as a kind of generosity, a gift – from Thom, and from Studio A. One day, we were sitting around the Studio A kitchen table: Thom, Angelmouse, and I. While Angelmouse and I spoke, Thom drew. He began on two exquisite corpses, like the ones he and Angelmouse had been playing around with during their studio time the previous Saturday. It’s a technique the surrealists loved. You fold a piece of paper into three sections, and then each person

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FIGURE 5.12

Thom and Angelmouse, Best Friends Going Through a Tunnel, 2018, digital collage. Exhibited at Firstdraft, Paired, Sydney, 2018.

Source: Photo courtesy the artist and Studio A

draws something, without knowing what the other person makes. Thom was adamant that neither I nor Angelmouse could look as he drew his sections. In one of them, Thom put two sets of feet at either end of the paper. In the other, he drew two heads. We all cracked up. “Head to head, feet to feet,” Thom said as he wandered of to show the other Studio A artists their latest collaboration.

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Angelmouse and I  continued to talk.3 We spoke about Art and art, and about artists and Artists, and about children and about food and about money. We spoke about capitalism. We spoke about the art market and the wheel of production and identity and celebrity it requires. We spoke critically about Studio A, in a way, because it too feeds and is fed by the market. Of course, we also agreed that Studio A is incredible: it’s atmosphere and light; the fact that people love working there and love each other; the fact that they have helped Thom share his work with so many people all over Australia and across the world. We spoke about how the work that they have made together – as Thom and Angelmouse – shows audiences their relationship, and how they have come to understand one another. In a way, she said, “it’s about me interpreting, but also about Thom being generous enough for me to interpret. It’s about him receiving me, and me receiving him as well.” Sometimes, Angelmouse continued, she has felt a sense of responsibility, or a duty of care. Sometimes, she has felt as though she is assisting Thom. For example, assisting Thom to talk to me just now. “But when we’re in that really raw state of creating . . . all that stuf kind of falls away.” I too have felt a duty, perhaps a burden, to represent Thom with care, to work with him carefully. And I  too have felt all that fall away when we sit together at a desk: head to head, feet to feet. Thom and Santa Claus

Millennium Train Santa Claus New York Towers Giant is a big man with a shock of white hair. Most people know him as Scott Wright, the co-founder and artistic director of Erth Visual & Physical, Inc., a company that makes puppetrybased theatrical productions, often in collaboration with communities. Thom’s frst name for Santa Claus was once, fttingly, Gepetto – Pinocchio’s father, the puppet maker. But his name very quickly changed from Gepetto to Pinocchio – from the puppet maker to the puppet. And then it became Santa Claus. And now it is Millennium Train Santa Claus New York Towers Giant. Once, I  asked Santa Claus to describe his relationship with Thom. He sighed, paused. “My relationship with Thom,” he said, “comes from my relationship with Studio A. And I think my relationship with Studio A is as the ‘cool uncle’. And I don’t know what my relationship with Thom is. I think of him as a friend. . . .” When Santa Claus frst began to work with Studio A, he understood very quickly that he was not an expert, imparting wisdom, but a collaborator whose main role was to fnd a way of becoming a part of the artists’ world. So, they played together. Using projections and physical puppetry, they took over Carriageworks, a former railway-yard-turned-multi-arts precinct in the centre of Sydney. Skye Saxon donned a set of wings and few around the foyer. They animated Thom’s work and made it dance along the walls and foor. After that

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FIGURE 5.13

Thom Roberts and performer Teodora Castalucci during a Residency at Socìetas Rafaello Sanzio, Cesena, Italy, 2019.

Source: Photo courtesy the artists and Studio A

frst period of play, every time Erth were in rehearsals at Carriageworks Scott would block out time to invite Studio A in, and just explore. There was never an idea, or a preconceived outcome, Santa Claus said, “until it made itself available to us.” In 2016, a residency came up at an arts centre in Bundanon, on the south coast of New South Wales. The year after, they did another. One time while they were there, in the former home of the painter Arthur Boyd, near the banks of the Shoalhaven River, there was a big storm and they got fooded in. A group of them were stuck together for three more days than planned. To keep themselves entertained, Skye Saxon presided over a mock wedding between Meagan Pelham and Thom.4 Another time, on the banks of the Shoalhaven, Thom got straight to work collecting sticks and sticking them into the sand. “Hobart, this is Hobart City,” he told his companions. “It became bigger and bigger and bigger,” Santa Claus remembered. They started feeding it, fnding sticks that Thom could add. Then he began on cars

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and people, built out of egg cartons and sticky tape. They began to record him, using a VR camera, and a drone from above. In the footage from one, “you were very small, looking up as Thom reached down and picked you up and carried you around and relocated you in parts of Hobart city. But you could also, on the other side of the screen, watch him doing it from above, as if you were a giant.” This is something Thom loves: opposites, big and small, and giants. Again, nothing was ever expected of this experimentation. It didn’t need to have an outcome or a purpose. Another time, Thom and Santa Claus and Woody went to Italy. They went to make something with an Italian choreographer and experimental theatremaker who had plans – she wanted Thom to play an Elven king from a Goethe poem. But her plans didn’t prevail. Thom was not interested in the poem or the piece of classical music or the story the others had devised, which related to Hobart city and the VR footage they had been collecting. Thom was not interested so they just let things go. They played. They explored. The Italian choreographer’s daughter was in town, with her baby daughter. Thom named her Hobart. The choreographer’s daughter is a dancer. She asked if she could do some dance with Thom. They stood face to face, and she said, “copy me.” It grew and grew. “The thing that was fascinating for me,” Santa Claus remembered, “was the relationship between the two of them, as complete strangers.” It grew and grew. He copied her, she copied him. One move followed another, with no preconceived outcome. *** Santa Claus thinks it sounds wrong to say he works with Studio A. “Work is such a horrible word to associate with art,” he said, then put on a deep funny voice. “I made a ‘work’ of art. It’s like we’ve added the word work to art-making to justify it in a world where you have to have a proper job. I fnd myself stopping, when I go, ‘I’ve been working with Studio A . . .’ oh, no, I haven’t been working with Studio A, I’ve just . . .” “You’ve been playing with Studio A . . . ?” I asked. “I’ve just had a friendship, or I’ve had a relationship with Studio A . . . but I’m sure that some people wouldn’t understand that, so I have to put the word work in there.” Making Thom move and making decisions

Thom didn’t come one day so I  spent my time making him cartwheel and jump over trains coming into their stations. A whole crowd of Thoms – my absent boss.

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FIGURE 5.14

Thom Roberts’ cartwheels practice in Photoshop, 2019.

Did I  work for Thom? I  made him move. He was the boss, but I  still made some decisions. I took creative license. I didn’t understand what I was doing to be a collaboration in the sense that Thom and Angelmouse was a collaboration. I was making with Thom to understand him better. I was making as a form of ‘participant observation’. I was making with Thom to better understand his practice, which involves so much collaboration – making with others. For example, in this project of ours – making Thom move, making his trains move – Kermit had a lot of input too. So did Kylie Madonna. It was a collective enterprise, with Thom the creative director, in control of the vision. But I  wonder, did I  ever make decisions for Thom, not with him? How could I be sure? Sometimes, I  provided options about which he could say yes or no. For example, I chose a width of brush on the computer and asked if that was OK. “Yes.” I asked, “What colour?” “Green,” he said. “Light green or dark green?” “Light green.” I choose one on the colour wheel, “Is that OK?”

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“Yes, perfect. Thank you, Zoe.” Green is Thom’s favourite colour. Green green green green. Remote control

Some days I thought it would be easier if I just did the work on the computer, and Thom could do what he likes best – drawing and painting and taping and photocopying. I waved Kermit over. I tried to explain. He stopped, then spoke: “OK, this is great, but Thom, you are meant to be doing the work on the computer, because the idea is that you will be able to do all these things by yourself without Chloe. Chloe is here to help you and to teach you, but she isn’t going to just do it for you.” Here, we were navigating the dance between support and intervention, between independence and interdependence. We were meant to be doing it together, we were meant to be learning together. But fnding the right way to do that wasn’t always clear or easy. Once, another time, Kermit explained to me that he thinks of himself like a remote control. He doesn’t give instructions. Instead, he tries to work out what the artist wants to do and then ofers some diferent ways that they could achieve that – to conjure it, ‘to materialize it’. They might tell him where things should move, or how quickly they need to move. “I’m a remote control that can talk to people. And I  can do things like remind people about layers, or other tricky things that can happen when you’re working with graphics. But the creative control always comes from the artist.” So, I was to be Thom’s remote control. But in the process, I was to show him how to become a remote control himself?

FIGURE 5.15

Thom Roberts, Blue Rattler Machine, 2020, acrylic on canvas, 80.2cm × 116cm.

Source: Photo courtesy the artist and Studio A

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We scanned Thom’s train drawings into the computer using the photocopier: a red rattler and a silver train (an Angelmouse and a Freddy). Over the course of a day, we learned how to make the train doors open and close. I kind of taught Thom. For example, I showed him how to cut, copy, paste, and undo using the keyboard short cuts. Thom made a chart of the diferent shortcuts on a piece of paper. Whenever I asked him what keys he needed to use to do something he looked at the chart, then practised what he thought he needed to do using the symbols on the paper. Of course, Thom also taught me. He taught me that the train doors open on the inside of the train’s body, not the outside. He taught me about the diferent sounds trains make. He taught me about the importance of play for getting creative things done. A cure?

In her wonderful essay about the artist David Salle, Janet Malcolm (1994) writes: Writers have traditionally come to painters’ ateliers in search of aesthetic succor. To the writer, the painter is a fortunate alter ego, an embodiment of the sensuality and exteriority that he has abjured to pursue his invisible, odorless calling. The writer comes to the places where traces of making can actually be seen and smelled and touched expecting to be inspired and enabled, possibly even cured. But my trouble was that I was never at all sure about who I was coming into the studio – a writer, a researcher, an artist, a friend, a volunteer, an assistant, a teacher, a student? I still don’t know. But now I don’t care so much. The artists at Studio A aren’t so self-conscious. They taught me to be a maker: of animations, teas, sentences, babies, collages, paragraphs, beds, theses. I made a move towards people and objects that interested me. I wanted to see and smell and touch. Then I made them invisible, odourless. I tried to make a verb out of art. I’m not going to claim that I was cured in the studio. I am still an anxious wreck much of the time. I still don’t know what words are for exactly, beyond creating a faint impression of one’s experience of the real world through vibrations in the air, or black lines on the retina. But perhaps I am in the process of being relieved of a particular kind of burden to be something other than that which I am in any given moment. I put one word in front of the other. I notice my fngers, mute but moving. Notes 1 She replied: “Thanks for sending these on!!. It’s made my morning reading them & I literally laughed out loud & had epic weird smile face on the train!. . . Xx Woody Tiger Aka . . . baby Woody .”

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2 Revised elements of this section appeared in an article I  published in Overland (Watfern, 2018). 3 Here, I have taken some creative license and amalgamated content from two separate conversations with Angelmouse, one around the kitchen table at Studio A in 2018, and a second at a café in Redfern a couple of years later. 4 In that time, birdfoxmonster emerged, which would eventually become a ‘multisensory performance and dining experience’ starring Meagan, Skye, and Thom, staged at Carriageworks from 21 to 30 September 2017. “Bird seeks love, fox plays dead, monster becomes machine,” is all that’s left of the copy for this event on the Carriageworks website (https://carriageworks.com.au/events/birdfoxmonster/). “There was fllet mignon and potato gratin for Meagan, a salad of autumn vegetables and dried seaweed for Skye [like digging through autumn leaves to a grave], and hamburger sliders for Thom because, well, of course,” Santa Claus remembered. Each artist’s work was projected onto the dining table, animated. Woody and Kylie and Santa and others served the food to the guests. “At the end of the show,” Santa continued, “the audience was asked to consummate the marriage by helping wash the dishes. There was free-form karaoke. People loved talking to the artists. We created a caring, loving space.”

References Benjamin, W. (1935/1969). The work of art in the age of its mechanical reproducibility. In H. Arendt (Ed.), Illuminations. New York: Schocken Books. Hamilton, A. (2009). Making not knowing. In M. J. Jacob & J. Baas (Eds.), Learning mind: Experience into art. Chicago, LA: School of the Art Institute of Chicago, University of California Press. Hick, D. H. (2019). Using things as art. Grazer philosophische Studien, 2019(1), 56–80. doi:10.1163/18756735-000060 Malcolm, J. (1994). Forty-one false starts. The New Yorker. Retrieved from www. newyorker.com/magazine/1994/07/11/forty-one-false-starts Nelson, M. (2017). Bluets. London: Jonathan Cape. Taussig, M. T. (2011). Fieldwork Notebooks. Hatje Cantz; 100 Notes, 100 Thoughts: Documenta Series 001. Watfern, C. (2018). Best friends going through a tunnel: The art of Thom and Angelmouse. Overland. Retrieved from https://overland.org.au/2018/07/bestfriends-going-through-a-tunnel-the-art-of-thom-and-angelmouse/

6 LISA TINDALL How disability feels

An owl and some words

I can’t remember exactly when I frst met Lisa Tindall. I do remember that in my frst weeks at Studio A, Lisa was working on a soft sculpture of an owl, intently focused on stitching beads into its wings and body. Occasionally she would chuckle at a joke or call someone afectionately by their Thom name. The owl Lisa was making was for a judge, who arrived at the studio one day. She was impeccably dressed, with short blonde hair. “Now I’ll think of you whenever I look at this work,” she said. Lisa smiled. The judge left and took the owl away with her – wrapped in black cloth and plastic-bagged. “That must feel funny,” someone else said. “It’s gone, the owl is gone.” “What will we look at now?” Woody asked. “You’ll have to make something else,” Kylie Madonna intervened. Since the judge came to collect her owl, Lisa has made many more things – a painting of her mother, for example, and countless pages of words in her notebooks, and a large collection of woven squares that will be turned into a blanket. She made a dress too, an autobiographical dress hand-stitched with words from her notebooks. We made something together: a written thing about her work and her life, and my response to her work and her life. First, we presented it at a conference in Adelaide,1 then we turned it into a journal article for the British Journal of Learning Disabilities (Scott & Watfern, 2021) and an article for the online publication Art et al, which celebrates neurodiverse culture (Watfern & Scott, 2021).2 In the following pages, I try to describe how I’ve felt and what I’ve learned throughout the process of working with Lisa. She has taught me much about DOI: 10.4324/9781003466703-6

Lisa Tindall: How disability feels

FIGURE 6.1

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Photo Lisa sent me after I asked her to write with me for Art et al and told her we would get paid, 2021.

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writing as a kind of making, and in reading words from her journals I’ve come to know about her life in a way that wasn’t initially clear or easy. At frst, I wrote this chapter as a series of letters addressed to Lisa. It helped me to imagine an audience for my words. It helped me to understand my writing here as another kind of making with – an act of correspondence with Lisa and her work (Ingold, 2013). I didn’t want to simply be writing about Lisa and her work, but with her, in dialogue. But just because I  was addressing my text to Lisa didn’t mean that she would read it or respond. I imagined sitting her down in a café and reading aloud. But my words were too dense. I verged too much towards the abstract. I tried to write a letter in Easy Read, which is a way of making information easy to understand for people with intellectual disability. I didn’t send it. Eventually, in the last throes of my writing, I emailed her this chapter, these 8,000 or so words. I pushed send at 11:08am, called her at 11:14am to explain, and received a reply at 11:36am: “I am happy with it and don’t change it; leave it the same.” I have an inkling that she didn’t read it. A letter

Dear Lisa, This is a letter for you. A man once said that fnding things out about the world can be like correspondence. He said correspondence means noticing things and letting them afect us deeply. Then we can try to respond to what we have noticed. I am trying to correspond with: • you • your art and your journals • the things I have found out about your life First, I looked, listened, and noticed how I felt. I wrote that down. Then, we wrote some things together. I have learned a lot from you. I want to tell you all that I have learned. I hope I can do that in a way that makes sense. xoxo Chloe

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Life story

I can’t remember when I  frst met Lisa, but I  do remember when Kylie Madonna frst told me that Lisa was working on her life story. I was sitting with Kylie at the kitchen table at Studio A. She described a moment, a few years before, when Lisa had arrived at the studio with a stack of her journals. No one knew that she had been writing before that. It was then that Kylie Madonna realized Lisa was serious about getting her story told. Kylie paired Lisa with another writer and artist, Stella McDonald. Lisa gave Stella her diaries. At frst, Stella was drawn to the marginalia: the numbers and dates Lisa uses to keep track of the books, and the lives of people within them, like the years between members of her family being born. Stella saw the diaries as a visual thing, she had in mind that Lisa would produce text-based drawings. So, they sat together in the studio, Lisa and Stella, as Lisa made drawings to accompany short narrative phrases that Stella had selected from the diaries. Lisa made works on paper where she copied out the years from the margins of her journals. Stella found it hard to see a book in the journals. The life presented on the pages didn’t follow a narrative, it twisted back and forth on itself, it wasn’t always tethered to the truth. “The way she puts her life on the page is the way that we remember life,” Stella told me. Stella found it hard to see a book in the journals, but Lisa was writing a book. That was what she wanted to make. Eventually Stella realized that the drawings were not “the thing” – “the thing is the diary. It’s the everyday practice . . . flling the page, flling her life with shape and meaning. That was the thing.” Stella worked this out through a process of getting to know Lisa and getting to know the studio. Now, she and Kylie and I are focused on how to get the book (the notebooks, diaries, journals, whatever we want to call them) out into the world. Reading the journals: I

One day, Lisa gave me three of her journals to take home. I placed them carefully in my backpack, then moved them from my backpack to a haphazard pile on my desk, and then to a bookshelf on an adjacent wall. They sat there for many months. When I moved rooms and desk the journals came with me. I read them intensely at frst, then sporadically. I returned to them many times. Sometimes, while I worked, I would glance over to where they sat among the other words I had read or planned to read, near the box of my own journals. I was making sure they were safe, reminding myself of my responsibility, reminding myself why I was writing at all.

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FIGURE 6.2

Three of Lisa’s notebooks.

Source: Photo: Chloe Watfern

I marked pages with post-it notes that had the words ‘NOTE TO SELF’ written in red caps at the top and a little check box at the bottom with ‘RECEIVED BY SELF’, in smaller caps. This seemed appropriate, although it was not intentionally so. I wondered about the audience she imagined. I  wondered the same for myself. I suspect that we are writing for ourselves frst and foremost. But we also hope that we are talking to someone other than ourselves.

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FIGURE 6.3

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Detail from Lisa’s notebook.

Source: Photo: Chloe Watfern

“I want to tell Young Ladies and Gentleman,” Lisa wrote. “You can stand up for yourself, independent your life.” I transcribed bits and pieces that I had marked out with post-it notes, but when I  converted Lisa’s handwriting to text on a screen, something went missing. I wondered whether to transcribe the capital letter at the beginning of a word where it might not need to be. I wondered how much I should ‘clean’ them up, Lisa’s words? As I typed them into the computer, I saw myself correcting little points of grammar, like the fastidious editor. I wondered how to remain true to Lisa’s voice, while presenting it with as much dignity as possible. I wondered how I might transcribe a curve in a place where you wouldn’t usually fnd one in the Latin alphabet? I could see where she had fnished for the night and then started up the next day in a new pen – this one black, that one blue, another one purple with sparkles. There are few full stops. Lisa tends to start each new day with an ‘and’. There are lots of ands. There is a breathlessness to her writing. It loops and repeats because that is what days do. But it also loops and repeats as she writes about the same things over and over again, like how lucky she is but also how lonely she feels sometimes. How lucky she is to have friends and family, to have her Studio A family too. But then how lonely she feels, because her half-sister doesn’t come visit and she never calls, and her mum is dead, and she doesn’t know who or where her real dad is.

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Things happen in her life on the pages. But they aren’t in any consistent order. One moment we are in her early childhood, the next we are at the studio, or a doctor’s rooms, or the shopping centre, or a dream. She writes about her half-sister doing her hair and about wanting to learn to drive and about wanting to move into a new place with a big table and a big lounge room and a white picket fence and a pool, but her grandmother told her not to sit on the lounge because she would wreck it, so she had to sit on the mats. Then, she is in the present, making spaghetti Bolognese with her cat Betty Boo sleeping on her bed and playing all night .  .  . then, she is remembering, “we went to the snow and playing snow balls and throw at Mum all the time, My half sister riding on the Horse and thunder went so Fast and Mum and I couldn’t stop laughing at her.” Then on another page, another book: “I remember my half sister went on the horse and her horse didn’t move at all it stood there hasn’t move mum and I laughing at her and she got mad at us and the horse as well and I couldn’t stop laughing. . . .” Passages like these jumped out at me so I wrote them down. But I was meant to be on the lookout for things about Studio A and Lisa’s life as an artist because that is what I thought I was supposed to be researching. “I am Artists, a friend and Daughter and Niece Cousin’s and Granddaughter as well,” Lisa wrote in one notebook, which is a blue denim with ‘Get Inspired’ written on its front in a faded silver script. Chapter 10, it says on the inside cover. Chapter 10 of her autobiography, starting at page 344. In this notebook she has written, later: Studio A My family and they are Now and for ever and I am very Lucky to have them My Life they Still are to me I hope one day everyone who out there having children or someone you know who having a child with Disability and don’t treat one child you need to treat equal at Same time and My Mum didn’t treat us EQUAL . . . I imagined Lisa’s words blown up big on posters or made into banners and marched along city streets. There’s a politics in here, and her disability is an important part of her life story, which she is working so hard to get down on paper. Can I help Lisa be political? Have I helped her be political? What would that even mean? All I could do, and have done, is work with her and her words. Nothing about us without us

I wanted to work with Lisa, to collaborate with her, as part of my research, because I had been reading up on my politics and my research methodology. “Nothing about us without us.” That line lodged itself in my consciousness, made me feel, rightly, uncomfortable about my role as an academic and outsider writing about Lisa’s life, and about the lives and art of people

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with intellectual disability. “Nothing about us without us.” It is a potent mantra that has catalysed disability rights activists and advocates in their fght against oppression and disempowerment, a fght for their right to be involved in key decisions that afect their lives. “Nothing about us without us.” In research, it demands ways of working that, at the very least, meaningfully involve people with disability (disabled people)3 in the production and dissemination of knowledge. Of course, the defnition of ‘involvement’ can be slippery. Emancipatory research is a paradigm aligned most closely with the social model of disability. It aims to transform the social and material relations of research production, and hopefully, in the process, address the social and material barriers faced by people with disability. It is judged on its ability to empower disabled people throughout the research process. In the words of Colin Barnes, one of the chief proponents of emancipatory research: Emancipatory research is about the demystifcation of the structures and processes which create disability, and the establishment of a workable dialogue between the research community and disabled people. To do this, researchers must put their knowledge and skills at the disposal of disabled people. They do not have to have impairments themselves to do this. (Barnes, 1992, p. 122) Research projects commissioned and led by disabled peoples’ organizations are often the most clearly emancipatory in their design and remit. But any research can be emancipatory if it aligns itself with this paradigm’s core values. I read this quote from bell hooks in an article about emancipatory disability research: It is important that we speak. What we speak about is more important. It is our responsibility collectively and individually to distinguish between mere speaking that is about self-aggrandisement, exploitation of the exotic ‘other’; and that coming to voice which is a gesture of resistance, an afrmation of struggle. (hooks, 1989, p. 18, quoted in Barton, 2005, p. 319) bell hooks writes about the position of black women in a racist society. Barton (2005), quoting her, writes about the position of disabled people as they struggle for rights, choices, and participation. At the end of his article, the author goes on to ask himself a series of questions including: Who is my research for? What right have I  to undertake this research? What responsibilities arise from the privileges I have as a result of my social

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position? Does my writing and speaking reproduce a system of domination [and] oppression or challenge it? (p. 325) I too ask myself these questions. I asked myself these questions. I wondered, too, where the politics lay at Studio A. I went there interested in disability. I went there interested in how art works, how art works as a way of negotiating diference in a society where intellectual disability is still stigmatized, where people with intellectual disability face all kinds of barriers. But I found out quite quickly that most of the artists, Lisa’s friends and colleagues, didn’t have a political imperative to their making. Mostly they weren’t setting out to somehow represent their lived experience of disability, for example. Who was I to impose this upon them? But there is a politics to Lisa, to her art, to her story and her desire to tell it. And perhaps her politics suited my purposes. In other words, I was on the lookout for a collaborator – an artist – who might want to work with me to talk and write about their art in the context of disability, and for an academic audience. But were we going to transform the social and material relations of research production? “Nothing about us without us.” Art makes nothing happen. Art makes something happen. There is a large, and growing, academic literature about something referred to as inclusive research. It is aligned with emancipatory and participatory approaches, but is a term developed to describe research where people with intellectual disability are more than the subjects of research – where people with intellectual disability are involved in the formulation, creation, and dissemination of research (Nind & Vinha, 2014; Walmsley & Johnson, 2003). Research, to put it simply, is fnding things out. Lisa and I  began a miniature experiment in inclusive research focused almost exclusively on her life and art. Our work together falls into a tradition of life-history and autobiographical research with and by people with intellectual disability (Atkinson & Walmsley, 1999; Goodley, 1996). This is a type of research that focuses on personal stories as a direct route to social understanding, in the hope of allowing readers to “feel and think of the person’s story and the society against which it stands” (Goodley, 1996, p. 338). I was struck when I read, in Atkinson and Walmsley’s (1999) article, that, “until the mid-1970s virtually the only records we have of people with learning difculties are biographical fragments, scraps of information recorded by others which represent their lives in particular ways for particular purposes” (p. 203).

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FIGURE 6.4

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Lisa Tindall, age 14.

Source: Photos courtesy the artist and Studio A

Biographical fragments. Scraps of information recorded by others. Partial records of past lives. Atkinson and Walmsley refer to the “lost voices” of people with intellectual disability. All those people only represented by others, if at all. Represented by others for particular purposes: often, eugenics, or at the very least social control. So, autobiographical and life-history research with (and by)

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people with intellectual disability seeks to redress this – to place the voices of people with intellectual disability at the centre of narratives about them. I came to understand that my role, as a collaborator, was to help shine a light on Lisa’s story, to amplify the knowledge she was already sharing through her writing and her visual art. I could put my skills at her service. Of course, sometimes I failed. I used words that didn’t make sense to Lisa. Or I took our work in directions that suited me as much, or more than, her. But at least, I suppose, I tried. “In my journals and in my art,” Lisa told me, “I’m sharing my personal story because I want people to hear about it so that they can know about what I was going through.” I tried to help her make sense of her story and place it in the context of the society against which it stands.4 Two dresses

The frst dress, Lisa’s mum bought for her to wear to her formal when she was fourteen years old. It fell all the way to her ankles. It was light blue and paisley. There are two photos of her wearing it. In one, her shoulders reach up to her ears. She smiles nervously for the camera. In the other, she rests one hand on a brown armchair. The second dress she made when she was forty-something. She handstitched it with words from her journals. It is a recreation of the frst. I frst saw it at the Australian Design Centre on the 18th of March 2019. Lisa was wearing a bright red shirt and smiling ear to ear. The dress hung from a white wall: purple velvet bodice and long red satin skirt. It was hung high so that its hem just brushed the ground. I once told Lisa that I think her dress is like a symbol. I asked if she knew what that word – symbol – meant. She said no. So, I continued. “Like . . . a love heart is a symbol of love.” (What an inadequate explanation!) I told her I think her dress is a symbol because it stands for something else. How she feels about her mum, remembering their relationship, her life story. She told me she thought she knew what I meant. But later (and always) I wondered if things (always) must mean something. Later, I was sitting at my desk, remembering the dress, and looking at pictures of it. The critic in me began to ‘read’ Lisa’s artwork. I started with the carefully hand-stitched words, which were difcult to make out. I could see the opening line: “My Mum took Me to Macky Queensland.” I know how big a moment this was for Lisa. Her mum took her away from her dad when she was two-and-a-half years old. It’s something she returns to again and again in her journals. I know she misses her dad and wishes she could still be a part of his life. As I followed the stitches on Lisa’s dress I didn’t just think about the words; I thought about each stitch – all that labour and love, that labour of love, that making something like this requires. To quote Mitchell (2012), “text and

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textile share common association through the Latin texere, to weave. These fragile references suggest for textiles a kind of speaking and for language a form of making” (p. 325). In all the making that Lisa does, she weaves the story of her life with the act of the making itself. In almost one breath, the writing on her dress continues: “now I grew up started my new life at the gallery [Studio A].” When we worked together to explain the dress from Lisa’s perspective, this is what we eventually arrived at: In 2013 I started writing a book about my past and about my mum. That has been a personal thing. My life story has sad parts, difcult times when I felt alone. My disability is part of my story. If I have a bad day I sit down and write at home. If I get upset, I write again. It gives me relief. I write about my past, but I write about my future as well. When I was a kid my mum took me away from my real dad, and that is something I am still trying to understand. Writing helps. I brought the book into Studio A because I wanted to turn it into an artwork. No one knew about all the writing I had been doing! It felt good to share my journals with them. An artist called Stella came along and helped me a little bit. We looked through a box flled with photos. I found a photo of myself in a dress that my mum gave me. I  was about fourteen years old. The dress was for a formal dance at school. I wanted to put some words on the dress, words from my book. They are words for my mum. It’s a personal thing, and an emotional thing. It is a way to remember the past and think about the future. Some of my friends have lost their loved ones. I know how it feels to lose someone and I know it’s hard, you don’t get over it. I wish my mum didn’t die and I wish I could say I love her for all she did for me. I’d like to thank my mum for supporting me. I love my mum dearly, but sometimes she was a pain. I had to put up with a lot while I was growing up. So I made the dress, and I stitched words from my book onto the dress. Lisa made the dress in the studio, surrounded by, and with the help of, a supportive community – a family of friends and colleagues. They were there for her when her mum died. When my sister rang me and said mum’s gone it really hit me and I didn’t know what to say. She said Lisa she’s gone, she was crying, and I went no no no no no, I kept saying no no no no. She said Lisa, she’s gone. And I said no. And the next minute I had to sit down. It didn’t hit me. But then I said to myself

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I’m not going to stay home, I’m going to go visit friends. So I went into the studio, I popped in to say hi. They said oh I’m sorry to hear about your mum Lisa, and I said thank you thank you. They said we care about you Lisa, we do. I love Studio A, they are my family now. I’m very happy to be there when I can. But the one thing I miss is my mum. I wish I knew what to say or do in the face of Lisa’s loss, and in the face of some of the things she has had to endure over the course of her life. I am glad that she has Studio A.

FIGURE 6.5

Lisa Tindall, My Formal Dress, 2018, embroidered blue velvet and red satin, 230cm × 50cm.

Source: Photo courtesy the artist and Studio A

Lisa Tindall: How disability feels

FIGURE 6.6

Lisa Tindall, My Formal Dress (detail), 2018.

Source: Photo courtesy the artist and Studio A

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FIGURE 6.7

Chloe’s notebook with artwork on the cover by Lisa Tindall: Pink Skull, 2015, 50cm × 50cm.

Source: Photo: Chloe Watfern

A painting of a mother

Once Lisa sent me a photo of the painting she had made of her mum. It was before it was quite fnished. There were little bits of white coming through the skin, and through the green background. Another time, Lisa was watching a DVD of her parents’ wedding. She wrote about it in a notebook: “Outside the church and reception and friends and family and they happy Together and I can see my Dad touch Mum on her Removed her hair out of her face in 1973 2 ½ Years old I don’t remember When he Left Me and . . . ” A man removing hair from a woman’s face in a video of a wedding. A woman missing a man who is her father. A painting of a mother. That’s all for now. Skulls

Lisa has made many, many drawings and paintings of skulls. Once she even stitched them into a quilt. While I was spending time at Studio A, one of the

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notebooks I used had a picture of her artwork Pink Skull (2015) on the front and back cover. On the inside of the front cover is a printed statement, “About the Artist”: Lisa [Tindall’s] methodology is powerfully focused and driven. After deciding on a theme, she continues laboriously with that subject matter until she develops an easy fluency. A  recent source of inspiration for Lisa has been the Mexican celebration ‘Dia de Muertos’ (Day of the Dead). Her series of sugary skull paintings, which she describes as self-portraits, perfectly encompass the Mexican festival’s inherent contradiction. Lisa frst began working with skulls in 2013, and has consistently returned to this subject matter. She works predominantly in painting but has experimented with a variety of mediums including screen-printing, quilting and installation. Her artworks compel the viewer with their fun, lively and lollipop sweetness, whilst simultaneously depicting scenes of death.5 I also want to claim a methodology for Lisa. I want to celebrate her fuency. I want to celebrate the language of her art making, emphasize that it is a valid form of knowledge that she holds and shapes. But where can I fnd purchase on her language of skulls? What should I do with the fact that she has made drawing after drawing, painting after painting, of them? And that she considers these skulls a kind of self-portrait? When I  visited Lisa at her home, we ate chocolate croissants and drank tea at the round table next to her kitchen. Beside her television there were two blue dolphins made from glass and a small green ceramic skull made in a factory in the Day of the Dead style, with yellow eye holes and a red fower on top. Lisa showed me a book filled with drawings of skulls. One had rainbow teeth and a blue flower at its forehead. It was surrounded by a wobbling red line, a stick sprouting from its top with two leaves attached: an apple. When I  asked her about it, about them, she told me she makes skulls because it is something diferent to do. People have told her they are beautiful, and she likes that. Do they have anything to do with death? I tried to ask her. She said no. Because I wonder, I tried to ask her, if you started to make them around the time your mum died? (Always searching for meaning.) She was still alive, Lisa told me, when she began. I told her they are beautiful. Your skulls are beautiful. They are beautiful.

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FIGURE 6.8

Tea, croissants, and a drawing of a skull by Lisa Tindall, 2019.

Source: Photo: Chloe Watfern

FIGURE 6.9

Lisa Tindall, Skull Face with Purple Flower, 2013, acrylic and texta on paper, 29.5cm × 21cm.

Source: Photo courtesy the artist and Studio A

Lisa Tindall: How disability feels

FIGURE 6.10

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Lisa Tindall, Coloured Sunshine Skull, 2017, gouache, texta, and posca on paper, 41.8cm × 29.5cm.

Source: Photo courtesy the artist and Studio A

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Reading the journals: II

Once, I read one of Lisa’s journals in bed with my little boy by my side. Once, Lisa sent him donuts and he ate them for breakfast. A soft hand-puppet of a black cockatoo that Lisa made hung for many months from his sister’s bedroom door. In the journal I read Lisa writes about her sore foot. She writes about buying things from the shops and how much they cost. She buys a microwave for $20 and three cups and saucers and two tops to wear because they were half price. She buys kitchen tea towels, $1 each. She buys a lotto ticket. She buys new shoes and a pair of socks. She sells some skulls and makes some money. She has no hot water because there is a black-out on her street. So, she has hot showers at the Hornsby swimming pool. People come to help her. Number 2 (a.k.a. Lise Anderson) works at Studio A. She picks Lisa up in the morning and takes her to the studio. Lise listens to Lisa; she asks if she is OK when she is not OK, when she is feeling sad. She helps with flling out forms. And Lisa is so tired all the time, and her sore toe hurts a lot. She is tired and she had a dream one night; she confdes: Now I want to wish something I never had told anyone in my whole life is that I had a dream that there was knock on my front door it was my dad and my uncles as well and he said to me he wants to get know me and what I been up to thing I been telling them I’m artists and I used to be a bowler Athlete and Next Minute I woke UP It was a dream every night I had a Dream and last night I had a Dream again this time it was I was mum with three lovely boys and wonderful HusBand as well and Four more boys again they were grown up and this morning I woke up again it was a Dream . . . I almost fell asleep in bed with my son while reading Lisa’s journals. I closed my eyes for a few minutes and rested her words on my head, the pages balanced on my nose. I, too, am very tired all the time. But I rarely dream. The conference On Friday at the conference, it was really very good and when I sit down next to Chloe and I started talking and everyone listen what I have to say and started little tears in my eye and after that it was over done it and they came up to me and touch my dress and they never see that dress before . . . . I was very proud myself . . . this is what I want to do this talk to everyone around world here what we want to say I can do this all my life and talking front of everyone if I can do this in front of everyone and not get nerves and scared any more and put my head up high.

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FIGURE 6.11

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Lisa Tindall, Red Tail Black Cockatoo Hand Puppet, 2018, textile, 37cm × 15cm × 1cm.

Source: Photo courtesy the artist and Studio A

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At the conference, we hung Lisa’s dress from a luggage trolley that we borrowed from the hotel reception. The dress was on a hanger that Lise from Studio A had prepared. Lise was there with us, staying with Lisa. They had caught the plane down together from Sydney to Adelaide. Lise wrapped a silver ribbon around the hook of the hanger to make it look extra special. On a slide show behind us we showed pictures of Lisa’s paintings. In her speech that day Lisa told our audience: I started painting in 2000. I didn’t know how to do painting. I remember, I said to the staf “I don’t know how to do it,” and “I can’t do this and I can’t do that.” They told me not to say that. They told me, “you can do this.” And I said “OK, I can do this.” I decided I would try. In 2000 I sold eight painting, my frst paintings. My mum had said to me that I will never be an artist. The frst time I had an art show, she was shocked. When she saw all the paintings I did, she was blown away. When she saw one of my big paintings she said, “that’s not my daughter’s painting, she can’t do that.” When I told her it was my painting, that I had done it, she said to me, “if you don’t sell it, I’ll buy it.” But business people bought the painting, all the way from Western Australia. Lots of people were coming up to me, they said: “Did you do this? How did you do that?” I said, “I sit down and draw and paint.” And they said, “wow.” I haven’t stopped making art work since then. Later, Lisa spoke about her dress too. People in the room came up to us afterwards and looked at the dress and she said they could touch it if they wanted to. Some people did touch it. A woman, a self-advocate with intellectual disability, traced her fngers over the stitches Lisa had made. “Wow,” she said.

FIGURE 6.12

Detail from Lisa’s notebook: the conference.

Source: Photo: Chloe Watfern

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Reading the journals: III

Lisa remembers her mum drinking. She remembers things going in one ear and out the other. She remembers eating too much. She remembers taking chips from the cupboard because she was stressed. She remembers: at school they call me fatso and Pizza Hut I didn’t like them when they cal my Names at School or Neighbour hood they are very mean or cruel and Rude people and I didn’t Need that from home as well Because Nan does that as well, say nasty things about me, too lazy, too fat, don’t help out, I only think about myself or anyone else . . . She remembers when her half-sister was a toddler, she hit her eye on the corner of Lisa’s desk. At dinner Lisa watched her sister’s eye swell bigger and bigger and bigger and bigger. They took her to the hospital. That same week a tennis racket hit Lisa in the eye. On notebooks

The anthropologist Michael Taussig (2011) has written about the notebook as a kind of fetish object: “what is meant to be a mere instrument or a tool, a mere notebook, ends up being an end in itself” (p. 6). We deify the notebooks of our great forebears. Reading the notebooks of others, “we think we are watching a mind at work and can, as it were, eavesdrop” (p. 8). But, in reality, we often fnd pages that are unintelligible or obscure. Taussig turns, eventually, to Joan Didion. So, I  do too. Her essay ‘On Keeping a Notebook’. Taussig notes that all the fragments of perception that Didion has collected in her notebooks are something more than a personal archive. They keep “the current self in touch with former selves” (p.  11). I think, again, of Lisa. How she keeps in touch with former selves in a single sentence. About her use of the word ‘and’. ‘And’/then. I turn again to Didion (1968): How it felt to me: that is getting closer to the truth about a notebook. I sometimes delude myself about why I keep a notebook, imagine that some thrifty virtue derives from preserving everything observed . . .. I imagine, in other words, that the notebook is about other people. But of course it is not . . . Remember what it was to be me: that is always the point. In Lisa’s notebooks, she remembers what it was to be her, how it felt to be her. But her notes are not only about her. Of course they are not. And neither

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are Didion’s. They embody pieces of world that made an impression – people, moments, tennis rackets. They are about Lisa in relationship with others, including the unknown people who might read what she has written. Feeling lonely. Missing people. Feeling lucky. Loving people. Wanting more love. Lisa wrote, “sometimes I get mad with people I love and they don’t understand what I trying to say.” She wrote about people coming and going from her life. Support workers’ last days and frst ones. Support workers who help her and spend time with her at the shops or in her home. Support workers who move her things around without asking, who tell her what to do like she’s a little kid even though she’s an adult. I have even appeared in her journals, fragments of me squished into her accounts of the day to day, which are squished alongside her hopes and dreams and memories. She has appeared in my notebooks too. On writing

Lisa once told me: “Every night and day I sit at home and write. Thinking about what words I put in. They aren’t just in my head because I can put them down in the book.” She didn’t write when she was living with her mum. It was too much work looking after her. But when she moved into her own apartment, in 2013, she started “writing and writing and writing”: It makes me feel relieved and it helps me not get upset all the time. I sit down and write. I put my mind on it so I can concentrate on the book and not worry about anyone else. Again, it’s tempting to suggest a kind of therapeutic function for Lisa’s notebooks. Writing brings her relief. It helps keep her mind of worries. Writing has been a way for Lisa to take control of her life, and her life story. But I like Didion’s approach better – “we tell ourselves stories in order to live.” *** In the day I tend to write on the computer, my hands fying over the keyboard, but then I go back and delete, I stop and start and chop and change. In the night, I write by hand. I make a mess. I fnd writing very hard. But it also helps me think, I think. The same could be said for many things, even the weather. For example, I  printed out an early draft of these pages to read in my garden but left them unattended for a minute and a wind came and blew them away. When I gathered the sheets up again, they were all out of order and I read them haphazardly, the edges of the paper still fapping in the breeze.

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There is something to be said for chance, the kind of chance that a breeze brings. A  breeze is not at all random; it is made by a specifc diference in atmospheric pressure. And things can be out of order but still make sense. Reading the journals: IV

I was sitting in an ofce chair with my dog at my feet begging for dinner even though it was only four in the afternoon. I was reading one of Lisa’s journals, trying to ignore the dog. I was thinking about Lisa writing at home on her couch with her cat Betty Boo by her side. Every time Lisa sends me a text message it isn’t just from her; it is also from Betty Boo. She has dedicated poems to Betty Boo. One of them starts like this: I LIKE MY CAT BETTY BOO SHE IS WONDERFUL CAT IN MY LIFE. I MISS MY MUM FOREVER. BETTY BOO SHE HAS FURRYING CLOUD BODY AND SHE HAS BEAUTIFUL EYES TURNS GREEN DIFFERENT WHEN SHE LOOKS AT ME IN THE SUN AND WHEN I LOOK AT HER WAS THE ONE FOR ME AND I SEE HER BEAUTIFUL EYES AND WHEN SHE TURN HER HEAD AND SHE TELLS ME HURRY UP MUM AND FEED ME WHEN SHE TELLS ME THAT SHE WANTS TO PLAY WITH HER AND PAT AS WELL AND HER EYES TELL ME SHE IS VERY HAPPY AS WELL. Lisa has made a soft sculpture of Betty Boo with her own special house and on the walls of the house she has written some words and on the inside is a tiny empty bowl and a cat toy hanging from the ceiling. When I visited her apartment in Hornsby, Betty Boo didn’t come to greet me. She was sleeping in a corner with her legs curled up under her belly. Later, she came and pushed her way between my ankles. While I tried to ignore the dog at my feet, carefully turning the pages of Lisa’s journal, perhaps I was thinking about her writing with faint purrs at her side, because in one section she wrote this: My cat her name is betty boo she is my dream home to me and she is very special to me and I love her so much and she knows it I love her and she gives me a hug and cuddling snuggly to me, some of my friends lose their love ones and I know how does it feels to lose someone and I know its hard Not get over it and you get shock your Life and I wish my mum didn’t die and I wish I could say I love her the all she did for me when I was a baby

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now I Grow up My own Life and I like to thank to my mum for support Me and raising us kids. Lisa took care of her mother when she was sick and old; they took care of each other over long convoluted lives. Now, Lisa takes care of her cat Betty Boo, and Betty Boo takes care of her.

FIGURE 6.13

Lisa Tindall, Betty Boo, 2020, cotton, acrylic and beads on canvas, 36cm × 28cm.

Source: Photo courtesy the artist and Studio A

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Life practice

Stella McDonald has worked with all kinds of artists in her various jobs, including her current one as curator at a university art gallery in Sydney. Many of those artists, she told me, “are so conscious of their practice and the parameters of it.” They write their own artist statements and biographies. They say: these are the mediums I use, and I’m interested in exploring this or that concept through my work. Working with Lisa, Stella realized that she isn’t led by that: “She’s led by her feelings and her domestic life and the community at Studio A. Yet, her practice endures. And it’s very consistent.” Working with Lisa requires a diferent level of respect and care, because the line between art and life is thinner and more fragile. As Stella said, “you’re not dealing with someone’s practice, you’re dealing with someone’s life. That’s her life.” Impact

I’ve been very focused on understanding the ‘impact’ of Lisa’s work (and the ‘impact’ of other artists at Studio A): The ‘impact’ of their art on others, the ‘impact’ the making has had on them. That word is a staple of the contemporary university, which I  suppose is why I adopted it, interpellated it, but never letting go of the quotation marks. “Art makes nothing happen in a way that makes something happen.” ‘Impact’, my writing mentor Mark once pointed out to me, is an ugly word really. It carries an undertone of violence. What happens when an unstoppable force meets an immovable object? Did curiosity kill the cat? Know how we feel

What I mean is that I have wanted to somehow fnd and record evidence of how art makes other people feel, and what the artists might want other people to feel when they see their work. So, I’ve asked Lisa, lots of times. I’ve asked her: “how do you want people to feel when they see your work?” Lisa has said to me lots of times that she wants people to know what disability feels like: “I want all audiences to know how we feel.” Talking with her, and seeing her art, and reading her journals, I now know a lot about what it feels like to be Lisa. What it has felt like to be Lisa. Her disability is only one part of that. But it is an important part because it is important to her. Because of Lisa’s disability she has been excluded and spurned and called names.

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“Sometimes we can talk funny,” she told me. “But that’s how we do. I know we can’t speak properly, but we can. Normal people need to stop and think what we are saying. They need to stop teasing other people, like bullying. I was bullied at home in QLD. Mum told me to go get some milk. I went up to the corner. When I went up there, they call me awful names, they call me spastic. And I came back, and mum says where’s the milk? I said I’m not going up there. She said why? These kids called me names. I didn’t want to go but she grabbed me and took me up there and she said to their mum, your child called my daughter spastic. And do you know what they said? No, they didn’t. They denied it. That really hurt. I haven’t forgotten. I haven’t forgotten what they said. And I don’t want others to go through what I went through.” I once asked Lisa if she could tell me how she thought being an artist and sharing her story might help other people know what disability feels like. “I don’t know,” she said. “It’s so difcult to say. It’s so difcult to say it. I don’t know what to say after that.” She didn’t really have to say anything. I already knew. “They think we don’t work hard,” she told me. “But we have to work extra hard . . . I have to work extra hard.” I already knew because I’d seen the work. I had felt how it worked. I had followed the stitches and the strokes and the lines in the books. “Sometimes I get shy.” she told me. “They always come up to me. People I don’t know, at art things. Someone said to me, Lisa you need to look up. I said I’m shy, I don’t know what to say.” But Lisa isn’t shy at the studio. And she isn’t shy with me. She looks me in the eye. She tells me things and I write them down. I don’t know all the things she might want to say, or all the things she’s felt, but I have been able to feel my way into her life, alongside her and her work. Notes 1 The Australasian Society for Intellectual Disability conference, November 2019. 2 Lisa changed her surname from Scott to Tindall in mid-2022. Sections from the British Journal of Learning Disabilities article are reproduced throughout this chapter, with permission. 3 Preferences for people-frst or identity-frst language difer by individual and region. In Australia, the norm is still to use people-frst language, that is ‘people with disability’ rather than ‘disabled people’. 4 In my conversation with Stella about Lisa’s autobiography, she spoke of the importance of not making sense of Lisa’s words, of letting them be seen and read as they are, on the page that they were frst written. She wanted to present them as a facsimile, retaining everything, including the diferent page sizes and covers of each book. For the purpose of Lisa’s autobiography, as opposed to the autobiographical accounts I have constructed with Lisa, I agree that to let Lisa’s own sense-making speak for itself is important. As Stella said, “you can’t try and make it chronological or try and make too much narrative sense of it because the truth is right there.” I wonder if I could have found a way to bring more of Lisa’s indeterminate way of truth-telling into our accounts. 5 This also appears on the Studio A website, accessed 20 May 2021.

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References Atkinson, D.,  & Walmsley, J. A. N. (1999). Using autobiographical approaches with people with learning difculties. Disability  & Society, 14(2), 203–216. doi:10.1080/09687599926271 Barnes, C. (1992). Making our own choices. Belper: The British Council of Disabled People. Barton, L. (2005). Emancipatory research and disabled people: Some observations and questions. Educational Review,57(3), 317–327. doi:10.1080/00131910500149325 Didion, J. (1968). On keeping a notebook. In Slouching towards Bethlehem. New York: Farrar Strauss & Giroux. Goodley, D. (1996). Tales of Hidden Lives: A  critical examination of life history research with people who have learning difculties. Disability  & Society, 11(3), 333–348. doi:10.1080/09687599627642 Ingold, T. (2013). Making: Anthropology, archaeology, art and architecture. New York: Routledge. Mitchell, V. (2012). Textiles, text and techne. In J. Hemmings (Ed.), The textile reader (pp. 5–13). New York: Berg Publishers. Nind, M., & Vinha, H. (2014). Doing research inclusively: Bridges to multiple possibilities in inclusive research. British Journal of Learning Disabilities, 42(2), 102– 109. doi:10.1111/bld.12013 Scott, L., & Watfern, C. (2021). Becoming an artist and sharing my story. British Journal of Learning Disabilities, 49(3), 287–292. doi:10.1111/bld.12397 Taussig, M. T. (2011). Fieldwork Notebooks. Hatje Cantz; 100 Notes, 100 Thoughts: Documenta Series 001. Walmsley, J.,  & Johnson, K. (2003). Inclusive research with people with learning disabilities: Past, present, and futures. Philadelphia, PA; London: J. Kingsley Publishers. Watfern, C., & Scott, L. (2021). Writing Together. Art et al. Retrieved from https:// artetal.org/writing-reviews/chloe-and-lisa-writing

7 SKYE SAXON Kicking a thought bubble

Steampunk Ringmaster

When I frst met Katerina the Steampunk Ringmaster (a.k.a. the artist Skye Saxon) she was wearing circular silver steampunk goggles, a red velvet jacket with gold brocade trimming over a black top, white satin gloves, and black

FIGURE 7.1

Skye Saxon as Katerina the Steampunk Ringmaster, 2018.

Source: Photo: Document Photography DOI: 10.4324/9781003466703-7

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fared pants with embroidery around the fairs. We were standing in an unused driveway at the front of an art space in the heart of the city on a mid-winter day with blue sky above us and a huddle of almost-skyscrapers bearing down around us. I had just been turned into a skyscraper by Thom Roberts (blue, 555 m tall). I tried to ask Skye about the signifcance of her outft. She didn’t tell me. She stood for a while out on the street corner encouraging people to enter. A man walking a small dog stopped to pick up a poo. She didn’t talk to him, and he didn’t look at her. Into a head

On a shelf before a long window, silhouetted against a church spire and a Jacaranda, Skye’s “dollies” sat awkwardly, lifeless heads nodding. But I  had seen them in lots of diferent poses. I had seen them getting their guts stufed with fufy cotton stufng. I had stufed limbs myself. I had listened as Skye recounted the incredible tales of someone like Midnight, who’s “got big long ears, is dark purple, with dark brown to black feet. Razor sharp teeth. We used baby forks.” The artist herself has long brown hair that she keeps in a low-slung ponytail, and very long, well-kept fngernails. When she is particularly animated, usually as she tells the story of someone like Midnight’s exploits, her hands do a lot of the talking – perhaps demonstrating the trajectory of poison darts, or exactly how tiny the multi-coloured lizards are. And to both of us in those moments, Midnight was as real as the view out the window onto purple blossom, the occasional fight of an aeroplane farther out. Each time I  visited the studio more dollies had appeared, in various stages of completion: a pencil drawing sticky-taped to a window, a brightly painted sculpture replete with webbed fngers and whiskers, or perhaps just a rough calico form. I ran my fngers around the edges of Babaluey’s body, the uneven shapes of his legs. I thought he was a gorilla, a member of the sweet tooth gang who cry “shuttuppa your face” while waving their fsts. But there are so many characters, so many story lines, that I struggled to keep track. Skye was always quick to fll me in, to add a word or two about who is who and what is what. Babaluey, for instance, is a frozen Neanderthal caveman . . . silly me. Once, when I asked a question about something mundane like how long it had been since she’d been back in the studio after a break, Skye told me, with a sigh and a smile, “I don’t know. I don’t focus on everyday details. Well, I focus on details, but not on that level. I focus on storytelling details.” Skye contains vivid, extraordinary stories all layered and intersecting at different angles. They leak out in phrases and giggled sentences. They appear in her drawings, her performances, her digital work, and her dollies, which were just the beginning of a new project in the making.

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FIGURE 7.2

Skye Saxon, Babaluey, 2019, soft sculpture, 51cm × 27cm × 8cm.

Source: Photos courtesy the artist and Studio A

Skye Saxon: Kicking a thought bubble

FIGURE 7.2

(Continued).

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‘Dollies’ is actually a word Katy coined for the cast of bodies lining themselves up on the studio shelf. Katy Plummer is an artist who joined Skye on Wednesdays to help her give form to the huge interlocking set of stories that Skye calls, quite aptly, The Oddysee. When I frst met her, Katy explained to me, “we are both makers; we can spend the whole day not talking just making things and singing silly songs.” I asked if they could sing me one of their songs. They sang: fufy butt fufy butt fufy fufy fufy fufy butt. They were gluing an umber wool, hand-died by Katy, onto the butt of a character called Gutsman who is half orangutan half gorilla . . . Then they started on his belly: fufy gut fufy gut fufy fufy fufy fufy gut. They sang and they laughed and they kept on making.

FIGURE 7.3

Skye Saxon, Gutsman, 2019, soft sculpture, 76cm × 45cm × 21cm.

Source: Photo courtesy the artist and Studio A

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Between making dollies and singing silly songs, Katy and Skye had begun to get to the bottom or the top or the sides of The Oddysee. Originally, it was just something that Skye talked about in passing to the people in her life. They would receive little fragments, as I have, of a character’s escapades. Skye thought they belonged on a stage, with human performers acting out the many parts. But when Kylie Madonna got wind of it, she had diferent ideas. She was concerned that Skye might not be at her strongest or most confdent during live performance; she has been known to ‘freeze’ or become anxious in the lead up. “And her plan also seemed very resource heavy. I wondered if it was realistic or ever going to be realized,” Kylie told me. But most importantly, Kylie Madonna wanted to broaden Skye’s understanding of the diferent ways that she might be able to tell her stories. Enter Katy. Always wearing calico dresses cut to the same pattern: ankle length, billowing sleeves, almost Elizabethan. One is green with a pair of eyes sewn onto the back. She creates dark, mysterious video and installation work. They have the quality of fairy tales, those of the unadulterated Brothers Grimm variety. She told me that, like Skye, her narratives just spin out and spin out and spin out. But she’s also learning how to pull things together and structure them. She sees herself as ‘lending’ Skye some of those skills – certain ways of making, and of creating scafolds for making. After about a month of Wednesdays, Skye and Katy had managed to squeeze and shove and stuf The Oddysee as it existed in Skye’s head into the beginnings of a ‘thing’, that is, a physical entity to be seen and heard and perhaps touched by other people in a gallery, even when Skye was not around. I arrived at the studio a bit late, breathless as always. Skye was painting a big banner with the word ODDYSEE written multi-coloured on blue. “For the circus,” she explained. Was I looking at Skye when I began to ask more questions, or Katy? Both, or neither of them? Katy chimed in, “Do you want to tell it? How is this going to work?” Skye didn’t speak, so Katy did. She said that they had discovered that The Oddysee is not only a circus but also a container for lots of diferent stories, for “lots and lots of the worlds that Skye invents and visits and lives in”. Those stories would be told through the dollies, and through videos of Skye holding the dollies while telling them. Skye is the steampunk ringmaster, “holding the whole circus together, all of these diferent worlds and their characters”. “Like Fauramondo, he’s the DJ cat-fsh,” Skye piped in. She put the painted circus banner over on the drying rack and the pair moved over to the kitchen table to begin the process of making fesh out of Fauramondo the DJ cat-fsh. I followed. Skye talked to us as she drew, starting with the long dreadlocks, then his head, his “web-like hands, and web-like body all the way through”. “What do you mean web-like?” Katy asked.

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“Stretchy skin”. Skye’s pencil: long, short, long, short. Back and forth for detail. In the background, the constant chatter of the studio. Katy guiding Skye gently, Skye showing Katy how. “He’s got a few whiskers coming out of his face. Big eyes . . . He’s got a scarred tattoo over the front of his body . . . I don’t know what it looks like, but I do know that it’s scarred . . . And that’s Fauramondo.”

FIGURE 7.4

Skye Saxon, Fauramondo, 2019, soft sculpture, 64cm × 29cm × 12.5cm.

Source: Photo courtesy the artist and Studio A

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Katy got paper to trace out the limbs, so that they could cut them from calico. Later, they would paint him green, make whiskers from wool. But before that they turned his fat calico limbs inside out and flled them with cotton stufng. I helped. But I couldn’t help myself asking more. There were so many things I wanted to know, but I didn’t have the words to ask them. So, our talk meandered as we were making, which is how conversations generally occur, following the threads of diferent stories. Skye told us about when she frst met Midnight, her oldest friend, who precedes The Oddysee but is also integral to it. “I was fying around in my A-wing, which is an old bird. I got shot down by an eagle shadow character. The fre came from behind. Midnight must’ve heard my cries for help . . . I was getting very badly shot at, so he decided enough’s enough, I’m going to fy and help with this fghter pilot. So, he comes, fies in, scares of the dark shadows, shows his fangs and claws, stretches out his wings and legs and ears. . . .” Midnight saved Skye Fox. But he found out her royal secret – her birthmark. I showed them mine, a dark pixelated blob on my right hand. “I have one too,” said Katy, “mine looks like a pig on a hill, or a horse’s head. It used to disgust me so much when I was a child . . .. Umm Skye Fox, do you want to swap me? You can stuf his head and I can stuf his body?” And perhaps that is a ftting place to end this little scene: Skye stufng the head of one of her dollies, just one little facet of the big show in her head. Or maybe we can end with Katy, when she said to me that she doesn’t see what she is doing with Skye as a collaboration: “This is Skye’s. And it’s pretty much fully formed, it just doesn’t have a body and that’s my role – to help her give it a body, to get it out of her brain, and into the world.” “Into a head,” Skye added, laughing, holding Fauramondo’s calico oval in one hand, a wad of white fuf in the other. Pixie assistant

When I asked Skye about working with Katy, she said this: Katy has helped me work out phenomenal magic. Apart from being bright and bubbly and always looking really cool, I think she’s got more than just a little pinch of pixie dust in her. She’s got a spark of life in her somewhere from another galaxy. And she’s not always seen as a human. When I asked Katy about working with Skye, she said this: I helped build a tunnel and held up the walls, to let the art fow through. The art is not the dollies, and it’s not the videos. Those are the structural pillars. The art is the space between. Just like a painting is just an object that records the mark made as art visits. I helped create a space where art could visit. And that was an accidental magic thing that happened between us.

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FIGURE 7.5

Katy Plummer and Skye Saxon dressed as Wil from Marsytopia, with other Oddysee characters, June 2019.

Source: Photo: Chloe Watfern

Stranger

Skye remembers making footprints and handprints with paint in primary school. She remembers the teacher hanging them up on a line in the classroom, but they were hanging above a fan. She remembers them all getting torn up by the fan. “But do you remember a moment when you realized you wanted to be an artist?” I prodded and I probed. “That’s kind of the earliest memory I have of wanting to be an artist, seeing that art get accidentally torn up by the fan.” *** When they were little, Skye and her twin sister Kristel used to talk to each other in their own made-up language, pretending to be mice. Their hands would do a lot of the talking. Skye showed me how, although she couldn’t remember the exact words they would use. No one else could understand what they were saying. This meant their speech development was quite slow. They lived for many years in a small town called Bright in regional Victoria: snow country. They would drive the three-and-a-half hours to Melbourne for therapy because there was nothing in the area. To pass the time, Skye and Kristel would draw – from books, or illustrating moments in their lives. Like the time the foods came through – ten inches of rain in ten hours, and they lived

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downstream from two rivers. They were evacuated by an enormous front-end loader. So, Skye drew the foods. She wrote them too. Karina, Skye’s mother, remembers those days. She remembers the drawing and the writing – “it was their way of telling their story.” She also remembers seeing bruises on Skye’s legs when she came home from school. “I just thought, she’s fallen over, she’s banged into something.” Years later, Skye let her know about the bullying. Karina remembers how much Skye hated the transition to work programme she started after she left high school in Year 10. She hated it so much that she ran away one day, walking the many kilometres home from the nearest bus stop. Karina remembers Skye starting at Studio Artes, where Karina had also just begun to work. She was very into detailed drawing, but it was mainly copying directly from books. Kylie Madonna remembers frst meeting Skye at Studio Artes. To Kylie, she didn’t seem very happy – she would sit for long periods of time doing nothing; it was difcult to motivate her. She also had a bit of a short temper and would get irritated easily by other people. But then one day they were using chalk in the driveway outside the studio. Skye drew a big, abstract fgure . . . “how would you describe it?” Kylie paused, “it had a potency about it.” His name was Stranger. Skye explained, “He’s got green eyes. . . . He’s a bounty hunter.” “I must admit I was a little bit scared of Stranger when I frst met him, in a good way, I wouldn’t mess with Stranger,” Kylie continued. While Skye was making Stranger, it was the frst time Kylie had seen her really engaged in something. It was the frst time she had seen Skye create something that was immediately compelling, and a little bit spooky. “Then we were like, ah, we’ve found something that Skye likes to do.” To this day, Skye talks about how she makes art from the dark parts of herself. I have never met Stranger. The chalk washed away. And the drawing Skye did later, on a big sheet of white paper, was most likely burnt in a fre that destroyed much of Studio Artes in 2016. Catching stories in my net

Every time I returned to Studio A I caught up with Skye, caught up on her work. I saw the new things that she had made, but I also caught a few more of her stories in my net, with lots falling through, not sticking. She gets so carried away with her stories that it is difcult not to get taken with her, despite the strange sense that they are both true and not true, even for her. I didn’t know how to ask her what was real and what was imagined. One day, I met Babaluey the frozen Neanderthal caveman, again. Skye said I could hold him, so I did. I felt the roughness of the paint where it had formed little clots and lumps. I saw the uneven legs: one fat, one thin. Fauramondo had long twine whiskers now. They were all piling up around his snout.

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Skye started to tell me about the characters, but I steered the conversation in a diferent direction. “I want to know about you, about how you come up with these characters and how you tie them all together,” I said, because I was trying to piece it all together, to see how things cohere within the exuberance of her imagination. “It’s hard to explain,” she said. “It’s kind of like when you have chillies, and they get on your face, and it feels like it’s going to melt of. I melt my face and become diferent characters. I might grow long ears, or my hair might suddenly go white.” “Does that hurt?” “It might sting, but it doesn’t hurt. . .. And when I control them, I can also open their head at the back door to the master controls and then I can make them talk and move.” She mimed a kind of robotic movement. All the while I  was holding Babaluey. “Clunk, clunk, clunk, boom . . . And then I would just move comfortably inside the master controller. . . . What I see being inside their head is what they would see.”

FIGURE 7.6

Skye Saxon, Creature Red, 2016, textile mask, 26cm × 33cm.

Source: Photo courtesy the artist and Studio A

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At the art gallery: I

We walked and our walking echoed of the marble foor and the high ceilings of the institution. Everything reminded Skye of something. In one gallery, there was a series of bright, surreal photographs of people in strange poses. “There was a time when I was wrapped in white and black pieces of cloth, like a Band-Aid, they were wrapping me so tight. I  was like a puppet, you could pull the ends of the cloth and my arms would move like this, and my legs would move like this. . . . That’s what it reminds me of.” At the very end of a corridor, tucked away next to a screen, was a vitrine flled with the artist Kathy Cavaliere’s process diaries. There were drawings of a living voodoo doll casting love spells, with a little cloth doll beside it, stained with ink, wearing a newspaper shirt. Above the doll were the artist’s scrawled words ‘empty headless hollow shell’. When someone asked Skye, much later, what she saw at the gallery, she told them about this – about the voodoo dolls. On the creative process

“I’m not sure what that word means: process.” Skye said. “Well, how do you go from an idea to an exhibition?” I asked. It’s like having a cartoon light bulb above your head, that fickers on and of every time . . . well . . . a bit like Morse code. It’s like reading a book upside down and back to front. It’s like grabbing a needle and thread, pulling it out from your head and starting to sew it all together. It’s like kicking an old thought bubble and seeing what happens. “What would happen?” It would come to life. It’s like if you 3D-printed my head, cut little holes in it, and then you could see what was happening inside. It’s for everyone I know who can’t see inside my head. And it feels . . . . It feels . . . it feels like face-planting into a giant marshmallow. Hattel Aquereum I’m not going to tell you about the Hatell Aquereum or Sweet Umbria or Marsytopia. I’m not going to tell you about Fauramondo or Babaluey or Brainiac. I’ll leave those stories to Skye Saxon, otherwise known as Skye Fox, otherwise known as Katerina the Steampunk Ringmaster. For now, let’s call her Skye Fox, and for now let’s say she is the holder of the keys, she is the master of the circus and she is a traveller between worlds. She also

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knows how to use her hands – how to paint a picture with paint, how to make a doll with cloth, how to map the trajectory of a poison dart with a single well-maintained fngernail. She knows how to use her hands to articulate stories that deserve the accolade of epic.

Well, that is what I said in writing that went up online (Watfern, 2019). But I lied. Because even then I tried to tell again. I tried to explain. Even as I quoted Walter Benjamin (1955/2007), who once wrote, “it is half the art of storytelling to keep a story free from explanation as one reproduces it” (p. 87). *** It was a Monday. Skye was talking to me about Fauramondo, about the aquarium hotel he visits, which stretches up to the sky and deep down into the earth. She wrote its name down: ‘Hatell Aquereum’. It is a crystallized dome with pods where people can sleep. “Kind of like suspended animation”, she told me. Some of the rooms are flled with water, others with air. “I’d love to see what it looks like,” I  said. “Could you draw it? Because I have a picture in my mind, but I’m not sure it’s the same as the one in yours.” We found a piece of paper big enough to hold the large rectangular ruler and semi-circle stencil that she wanted to use to trace it out. I came back

FIGURE 7.7

Skye Saxon, The Beach of Four Suns, 2021, pencil, texta and ink on paper, 295cm × 41.5cm.

Source: Photo courtesy the artist and Studio A

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later to see the crystalline geodesic dome she had described to me simplifed into a long straight box with a curving roof – pro forma forms made from industrially produced stencils. But isn’t it always the case that the materials at hand shape how we express our inner realities? Sometimes, the way a line has taken form tells us as much or more than a fnished image. Looking at a drawing, we can attune ourselves to the movement of a hand embedded in it. Inscriptions

Skye and I had been working together all morning at the computer. Much of the time we were talking. Or, to be more precise, Skye was telling me things that seemed to be set of by even the slightest stimulus – the pixelated Photoshop canvas she was working on reminded her of Tetris, and the bottom of a swimming pool, and stained glass windows, like the stained glass parrot her brother made when they were kids, like the tall and intricate windows of the Sanctuary behind the monastery on the far-of planet of Marsytopia, where an adventure quickly ensued involving a humble farmer and a queen. And there I was wondering how on earth I was to help Skye come back to the computer and put stylus to tablet, fnger to mouse pad. Skye fnds stories in everything. But fnding the bridge between words and images, between the stories in her head and the people who might like to see, hear, or feel them, is another matter. Fittingly, Skye told me a story that lunch time, which seemed to get at this conundrum. She was eating her ravioli and special sauce from a small takeaway container, and I was fnishing up my lunch with a cup of instant cofee and a plum. Everyone else had already returned to work. We had been silent for quite some time; then Skye turned to me. “I keep on having this dream, and in it I have a son. Me and my son are in this giant library with high walls and books that reach up to the sky. We are doing our magical handwriting. We could go on for days and nights, just writing. As we do our magical handwriting the words get projected upwards into moving pictures. People can come in and watch the pictures as they appear projected up on the walls and ceiling of the library. They watch over our shoulders as the pictures come up.” “How do the words you are writing appear as images in your dream?” I asked. “Hmm . . . I think the actual word doesn’t come up, but the ink detaches and then moves around to form the picture. For example, the word ‘moon’ would become the night sky. Or, if the audience wanted to dance, they would request us to write music. And the musical notes would turn into the music of their favourite song, but it would also turn into people dancing.” I could picture this vividly in my mind’s eye. Ink detaching from words and becoming image. I wrote down Skye’s words. If I were to let the magical

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FIGURE 7.8

Skye Saxon, Cosmic Equation, 2018, pen on paper, 11.5cm × 31.5cm.

Source: Photo courtesy the artist and Studio A

realism of anthropology take hold, I could say that I ‘inscribed’ her discourse, turning it from a passing event into an account, “which exists in its inscriptions and can be reconsulted” (Geertz, 1973, p. 8). As I reconsulted Skye’s words, I thought some more about our spoken and written languages, and how they were once more deeply connected to sense and the sensuous. I wondered what the word ‘moon’ might look and sound like if it were to truly conspire with that celestial body. I wondered what words I  could use to give form to all that I  felt and thought. In the same way, that day, I had been able to see the light of Skye’s mind fltering through in vivid colours, a stained-glass window, but I couldn’t quite see it in the images she was making. We returned to the computer. Skye used a symmetry shortcut to create spiralling snowfakes and planetoids out of thin air. At the art gallery: II

Skye was interested in everything at the art gallery. When I asked her what she had liked so far, she reached out to the wall. “I  like the way this feels. I  do that in cinemas, run my hands along the walls . . . And I’m curious about the curtains. What’s behind the curtains?” We peeked through the curtains and found cracks in the walls. Through them, we saw little fickers of projection, but they didn’t make sense. In another dark room we had just seen an homage to Georges Méliès the magician, who spliced his celluloid body into multiples and few to the moon when cinema really was a new kind of magic. With our heads so close to the black walls, I realized that they had a scent – like smoke. I told Skye and she smelt the walls too. Yes, defnitely smoke. She pointed out the black grains of wall all over my forehead. A security guard told

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us that it was Portuguese cork. The artist, William Kentridge, had wanted the walls to be special. Skye was also very interested in the marble foor. “It’s like a game,” she said. She tried to walk without stepping on the cracks. “And this one,” she pointed downwards to a tile. “This one reminds me of a universe, or a galaxy.” Stuck and unstuck

Once, I asked Skye, “is there anything hard about being an artist?” “Well, it depends on the day,” she replied. “Sometimes it’s great, fun, experimental play. Other days, well, it might be that you’re stuck and you’ve got to fnd a way to get unstuck or unwind. You’ve got to let the rhythm go until you become unstuck. Sometimes at night I’ll get a scroll that only I can understand, and I need to fnd a way to unlock the code.” “How does that relate to the challenges of being an artist?” “I don’t really know, but I do know that it’s raining outside.”

FIGURE 7.9

Skye Saxon, Night Webbing, 2021, texta, glitter gel pens and ink on boxboard, 29.5cm × 42.5cm.

Source: Photo courtesy the artist and Studio A

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Skye writing

I had been procrastinating, reading short snippets of texts in an anxious haze: Intellectual Disability and Stigma; Culture and Truth: Art of the Encounter. I had been trying to write and deleting the words almost as soon as they had emerged on the blank screen. I decided to go for a run. Out in the open on the path by the coast, wind soft but building, I looked up. There were the traces of lines in the sky above the ocean, the relics of a sky writer? Write Skye, I thought. Write Skye. I chanted it to myself like a mantra in time with the rhythm of my feet. *** Skye once took me over to the plan drawers by the windows at Studio A, looking north to greener suburbs, and brought out two sheets of paper, one black the other white. Magic runes written by Hank Octoman, an octopus who is also a dark Mage. She told me how, a long time ago, she found Hank washed up on a beach, seagulls pecking, waves lashing and gashing. She saved him from a certain demise. His black paper was covered in a dense scrawl of white pen, the white paper was covered in a dense scrawl of black pen. She moved in her explanation between describing it as her own writing and as the writing of Hank. “There is a fuidity that moves naturally between the two,” I wrote then, frantically, in my car – I meant, a fuidity between Skye describing herself writing and Hank writing. Their scrawling is intentionally illegible. If not, it could be dangerous for other people to read.

FIGURE 7.10

Skye Saxon, Magical Handwriting II (detail), 2019, gel pen on paper, 49.5cm × 25cm.

Source: Photo courtesy the artist and Studio A

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The whole story

Once, Skye told me, “I haven’t really told you the whole story, I’ve only really told you bits and pieces of the story.” So, I asked, “how do I get the whole story? The whole story of what?” “I mostly dream or act it out. We could be on Marsytopia right now and I could be talking to you about how when we were kids we helped the princess to sneak out of the castle, to avoid the teacher who taught her who was so boring. He literally would put everybody who listened to sleep. Even the guards. We would have a wake-up ice bucket system.” Skye was working on a map. She was drawing in pencil on a piece of paper that was quite crumpled. “It’s supposed to be a map of where everybody lives and where everybody comes into The Oddysee. But now I’m thinking it looks more like the map of Marsytopia. A bit like if Mars and Earth collided and were put in a capsule to create Marsytopia.” She told me it’s like a navigation tool. “It’s like navigating my brain .  .  . I’ve got no idea how to navigate it. Well . . . I kind of do.” “How do you navigate it?” “It depends on the day. Sometimes it will be a rocket ship playground or something like that. Other days I’ll have a set of wings and I can just fy, or, a rocket-powered scooter. I’ll be like ‘see ya, bye.’ Or there will be days when I’m wearing my trench coat, I would run home sometimes but I’d feel like I’d take of.” “How do you let us navigate it?” “I would give you guys a key that allows you to unlock any door so that you can navigate certain paths in the mind map and fnd a weapon, like a cross bow, so you can navigate your way around even if you have to shoot. I can’t promise it will be safe. Some days you might bounce around on jelly. Other days you might be running for your life, shooting creatures. Other days you might be playing strange puzzle games. Sometimes you have to race against the clock so you don’t end up . . . deceased. I also love it that you can be swimming and you’re like . . . OK, I’m swimming in deep water but you don’t need to hold your breath.” Characters and cream pies

I visited Skye and her mother Karina at their home in Rouse Hill on a suburban street of neatly rendered townhouses, each almost but not quite identical. In the small plot of garden out front there were some maples and one brilliantly purple hibiscus. Skye’s room was also small and flled with treasures.

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FIGURE 7.11

Skye Saxon, Frosted Webbing, 2020, acrylic and posca pen on canvas, 51cm × 76cm.

Source: Photo courtesy the artist and Studio A

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For instance, there were plush foxes of all shapes and sizes, including a little stash of them that she revealed to me under the sheets of her neatly made bed. There were graphic novels and DVDs stacked on a bookshelf near the door. There were framed prints from Zelda above her walk-in-wardrobe. Skye told me Nintendo has been an inspiration. She likes the art in the games, and the music and the back stories too. Midnight was sitting on a chair next to her bed. He is a little bit terrifying, I admitted to Skye. “Particularly those teeth. Baby forks, right?” She nodded, told me she wants to make him a cofn so she can carry him around with her and scare people, or just show him to them. I wondered how that would turn out. In the living room, Skye showed me a canvas stacked up in the small space next to the TV. It was quite dark but there were small multi-coloured dots all over it. It’s called ‘The Aftermath’ she told me. She made it with her art therapist. “It’s the circus characters, they’ve all been jostling around, throwing cream pies at each other,” she explained. Karina came over with a photo of Skye and a painting at Studio A. “It’s interesting isn’t it, how this one is so light while the other one is so dark. This one,” Karina said, pointing to the painting in the photo she was holding, “reminds me of a spider web covered in dew, just catching the morning light.” “It’s a snowfake,” Skye corrected her. “Every snowfake is diferent.” I looked closer. The snowfake was covered in Skye Fox’s miniscule writing. Earlier, Karina had told me that Skye’s characters can be problematic, because sometimes Skye has difculty separating between the two: “It’s about the switch and knowing when to do that.” “When the girls were still at school, they used to go to a musical theatre group. They’d put on a performance once a year. The girls had to learn that when you’re on stage you’re in character, but then you have to get out of character. Somewhere along the line she’s lost a lot of that knowledge.” Elemental empathy

Starting from when the artist, researcher, and autist Dawn-Joy Leong was very young, about four or fve years old, she had a fascination with characters, both historical and fctional. As a child, she would ‘put on’ their personas every day. She even hand-made her own costumes. Sometimes she would inhabit the characters, other times they would inhabit her. Like Thom and Skye, DawnJoy has never liked her given name. “Dr. Dawn-Joy Leong sounds like some poor sci-f movie character to my innate ears,” she once told me. Perhaps, she wondered, she might change her name to Scheherazade – one of her personas

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and the namesake of a recent performance artwork. She explained, “I fnd it easier to talk about myself when we (the characters and me) inhabit and personify in oneness.” In her memoir Nobody Nowhere, Donna Williams (1992) also describes personas she discovered and adopted from a very young age: People were forever saying that I had no friends. In fact my world was full of them. They were far more magical, reliable, predictable and real than other children, and they came with guarantees. It was a world of my own creation where I didn’t need to control myself or the objects, animals and nature, which were simply being in my presence. (p. 8) Dawn-Joy Leong suspects that this tendency towards inhabiting other personas relates to what people refer to as autistic ‘masking’ – a coping mechanism, a way of passing as ‘normal’. “I  was learning to perform,” writes Williams (1992, p. 15). But it also points, she told me, “toward a kind of connectivity with the material and wider sentient world. Science has now proven that even plants have a version of sentience that us humans failed to notice before.” Be someone else

Once, I asked Skye, “If you could tell people at least one thing so that they know why seeing your work is important, what would that be?” “I don’t know that there’s just one thing I would tell them. There’s lots of things . . .” Skye paused, then she started speaking quite fast and didn’t stop for quite a while, not really drawing breath. “If being yourself doesn’t work out, don’t be yourself, be someone else. If that other person helps you get through the day, be them, even if it’s for just that one day. If not, and they don’t exactly work out, change that character and be someone else. You might be surprised and you’ll be someone or other you haven’t thought about in years. Or they might kick your butt.” A maze

Skye used to work at a café down the road from her home. When I visited, we went there for lunch. On the walk, she told me about the neighbourhood cats, and pointed out the playground, which has giant serpents and two crocodiles built into it. The café was like an old farmhouse in the middle of the suburbs. Nearby, two big cranes were building a high-rise. When Skye used to work there, she told me, she would take out bins, clean dishes, that kind of thing, “but they rushed me too much.” There was a big, older man who seemed

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to own the place. He took our order, smelt like cigarettes. He was neither friendly nor unfriendly. He had small, squinting eyes. When we paid, up at the counter, he nodded towards me. “You’ve got a friend with you today.” Skye explained that I’m from Studio A. Silence. I felt the need to tell him that Skye was in the middle of a big project at Carriageworks, in the city, and that I  was writing about it. He didn’t seem impressed, but he also didn’t seem like the kind of guy to give much away. “She brings in her drawings,” he told me. “Her art . . . I mean, her crafts,” he corrected himself. Over lunch – wedges and onion rings – I had asked Skye what she planned to make next. She had ideas about a maze. You collect pictures along the way that tell a story, but only if you collect them in the right order. You might come out as a hero, or you might come out as yourself. References Benjamin, W. (1955/2007). The storyteller (H. Zohn, Trans.). In H. Arendt (Ed.), Illuminations. New York: Schocken Books. Geertz, C. (1973). The interpretation of cultures: Selected essays. New York: Basic Books. Watfern, C. (2019). Oddysee: Skye Saxon. Running Dog. Retrieved from https:// rundog.art/oddysee-skye-saxon/ Williams, D. (1992). Nobody nowhere. London; Sydney: Doubleday.

8 MADAME WITCH Between worlds

How would you start?

It was an overcast afternoon.1 Outside, puddles on the ground refected sky. We were inside Carriageworks, in one section of a smaller structure made from steel beams and felt panels. It was temporarily housing the work of eleven different artist-led initiatives from across NSW. That day, the artist Skye Saxon was Madame Witch. She had been reading tarot for visitors, from cards she had made herself, but was taking a momentary break from her work. Madame Witch leant her elbows on the frame of the window separating her space from mine – I was a ‘writer-in-residence’ with an arts publication (Running Dog), our area conveniently positioned right beside Studio A’s installation.2 Madame Witch’s emerald-green hat sat abandoned next to her tent. The hat covered everything but the legs of her familiar, My, who is a cat but also a character from the Moomin series. I could just make out twenty jewel-like cards pinned to the wall behind Madame Witch and to her right. I was there to write about her and her art. I wanted her to help me write. “How would you start?” I asked “I usually start by complimenting them on what they’re wearing, or something like that. I ask them if they’d like a reading.” My reading

I complimented Madame Witch on her outft. Now, she was wearing her hat. I asked if she would give me a reading. She agreed. I sat down on a snowfake on a pillow on polished concrete foor with small fecks of stone and a crack running through it all the way out past another Studio A artist Matthew DOI: 10.4324/9781003466703-8

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Calandra’s drawing-in-progress of Madame Witch in her abandoned castle in the middle of a forest. The snowfake on my pillow had eight wonky diamonds cut into white cloth. Its radiating dendrites were painted blue and grey. It was fecked with stitches in silver thread. Skye Saxon has made many a snowfake in her time. I imagined myself a weary traveller, stumbling upon an enchanted fortress. I imagined myself as someone who believes in tarot and the divinatory power of the cards. “I’m in your hands.” “You’ll have to sanitize frst.”

FIGURE 8.1

Skye Saxon as Madame Witch, 2021.

Source: Photo courtesy the artist and Studio A

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We laughed. I sanitized, shufed. She selected the cards and placed them one after another on the grey box between us. You were The Tower. You are The Serpent. You want The Fool. But what you get is The Hermit. “What does that mean?” “You’ll soon fnd out.” Do you want to know what they say?

During my time at Carriageworks, I  followed Madame Witch around, and asked her questions, and watched other people have their tarot read and asked them questions. Over four days, I audio recorded conversations with eighteen people immediately after their reading. I asked them to talk me through their experience and sometimes probed them to consider how cognitive diferences may, or may not, have played into their interaction. When I spoke with people who had had their tarot read, I tended to do this away from Madame Witch. This felt strange, and ethically fraught because I was talking about Madame Witch, not with her. And I was sometimes using words that she doesn’t identify strongly with, like disability. But I felt the separation was necessary to understand peoples’ responses, because I  suspected that people might say diferent things while talking with Madame Witch. I suspected they would ask me diferent kinds of questions. This distinction is not something I tested empirically. “What do you think about me recording interviews with people after they have their tarot reading? Do you want to know what they say?” I asked Madame Witch. “I don’t care what people say, as long as they have a good laugh.” Vice versa

Many people told me that Madame Witch’s cards had told them something meaningful about themselves or their lives. “It forced me to think about how I am or will apply them to my life from this point onwards,” said one man. “The power of the cards!” I responded. “Yeah, art imitating life and all that, or vice versa.” Another visitor confded, “There’s always something satisfying about someone telling you something about yourself, even if it’s, you know . . . mythical,” she laughed. “Because it’s a nice feeling to pretend that someone can see into who you are.” ***

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Madame Witch approached a man wearing dinosaur shorts and shark socks while they were waiting at the café for their orders. He agreed to have his tarot read. He was also an artist in the show. After his reading was fnished the man was confused. “So, what’s going on, where is the performance?” “This is the performance,” Skye explained. “Ah, I like it, you’re activating the space.” None of us were completely sure what activating meant, where the divide between art and life was, when the performance began or ended. *** “I’m just curious,” someone else asked me, “whether she’s knowing it’s a performance and she’s playing the part of Madame Witch, or whether she truly believes in tarot and she’s just using this as an opportunity to do readings for people.” I had heard Kylie Madonna play up the ‘ambiguity’ of Skye’s performance. As an anthropologist, Kylie has had a longstanding interest in shamans,

FIGURE 8.2

Skye Saxon taking a break from Madame Witch with her mum Karina, Carriageworks, 2021.

Source: Photo: Chloe Watfern

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mysticism, and the occult. She has a tarot deck at home that she will consult every now and then. So, I played it up too. The ambiguity. “I think it’s a bit of both,” I replied. “She’s an artist and it’s her arts practice. But it’s interesting when you can’t always know, when you’re not always sure.” Between worlds

Skye Saxon’s grandmother was very intuitive. She passed away at their home in Baulkham Hills, in the north-west of Sydney. It was a big white house with two storeys. Skye’s mother, Karina, remembers cupboard doors opening and closing in the kitchen of their own accord. The back door leading into the yard would do the same. It was nothing to do with the breeze. Skye’s grandfather was always interested in the idea of being between worlds. He had a book called Borderlands, flled with stories of people passing over between life and death. He died too young, not long after he had returned to painting. He made intricate Australian landscapes in a studio above their garage, accessed by a spiral staircase. Nobody was allowed in there without his permission. He had set up a system so that whenever he needed something, he rang a bell, and it would be delivered. Delivering a cofee one day, Karina told him he needed something in the foreground, and that the light wasn’t quite right. He ended up putting a fence in. She found herself invited back more regularly. I found this out because when I asked her if she is an artist too, she said no, more an art critic. *** “I kind of like hearing about the bell system.” Skye told me. “I’ve never done it myself, but I like it. If I had to do a system like that, I’d have it so the people downstairs would see a picture system. Something simple like I want this this this and this, made into this . . . while I’m working.” She pointed to imagined pictures in the air above us and I could almost see them: Chocolate, marshmallows, hot water, milk. The Hanged Man

I found out that Madame Witch takes direction from the cards, but she also reads peoples’ faces. “How do you read peoples’ faces?” “It’s a combination of the facial expressions, the colours, everything.” An invigilator chimed in: “Oh, so you read the auras as well? You do quite a bit then!” In my humble opinion, the best thing about Madame Witch’s tarot reading was not the quasi-psychic insights she provided but the chance to hear from her what each of her drawings meant. What they meant for you, in her humble opinion.

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Madame Witch gave the Tarot her own special twist. My favourite is ‘The Flying Fox’ – her version of The Hanged Man. In some interpretations this card depicts the Norse god Odin, who hung himself from the tree of life for nine days and nine nights. He wanted to know about other worlds. He wanted to understand the runes. Madame Witch said of The Flying Fox: “It could be telling you that you need to see the world from a diferent point of view, upside down in this case.” But I didn’t get The Flying Fox. You were The Tower A chance to escape A ladder to climb down Don’t be afraid to use the back door Or your secret, special key3

FIGURE 8.3

Skye Saxon, The Flying Fox and The Tower, 2020, ink and pencil on paper, 15cm × 10.5cm each.

Source: Photos courtesy the artist and Studio A

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FIGURE 8.3

(Continued).

Tiny writing and tents

Madame Witch joined me in the Running Dog room. We stood by the big glass doors and looked out at the people forming a line labelled ‘audience’. For some reason, as we stood, Madame Witch told me she couldn’t keep up with what the teacher said at school, so she wrote everything really small. Which reminds me, did I tell you about the tent yet? It was made from a white parachute and it was hanging from the ceiling in Madame Witch’s castle. All around its pointed tip were spells, and the stories of magical peoples’ lives. But they were in a writing that no ordinary person could ever understand. There have been other scrawling words in magical scripts, and there have been other tents. In a tepee in a Kandos pine forest back in 2017, Skye

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FIGURE 8.4

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Skye Saxon, Snowfake Shaman’s Winter Wonderland, performance for Cementa Festival, Kandos, 2017.

Source: Photo: Alex Wisser. Photo courtesy the artist and Studio A

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FIGURE 8.5

Skye Saxon, Oddysee installation view at Cement Fondu, Sydney, 2019.

Source: Photo: Chloe Watfern. Photo courtesy the artist and Studio A

Saxon became a Snowfake Shaman, relieving visitors of whatever was bugging them: “I shouted into the heavens telling things to go away and never come back.” A couple of years later, in a white cube in an inner-city art gallery, Skye Saxon became Katerina the Steampunk Ringmaster, and some torn strips of red fabric formed the edges of her circus tent. The circus contained a number of diferent universes with a number of different inhabitants with a number of diferent stories that happened to overlap if you happened to have the key. The circus thing was, in some ways, a matter of convenience. It was a device for holding all the stories and all the universes in a single room. It was a way of navigating one particular brain and keeping all the characters on track. Spirals

An older woman with a blue wash through her short hair arrived in the space early one morning, before Skye had arrived. She was standing beside the tent, watching a video of Madame Witch interpreting each card, and turned around

Madame Witch: Between worlds

FIGURE 8.6

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Skye Saxon, Wheel of Fortune, 2020, ink and pencil on paper, 15cm × 10.5cm.

Source: Photo courtesy the artist and Studio A

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to suddenly see Madame Witch in person. Madame Witch invited her to have a reading. What she’ll get: the Wheel of Fortune. “You’ll need to go on a wonky path,” Skye told her. “Because it’s a wheel, am I  going to go round and round and round in circles?” She wanted to know. “No, you won’t have to go round in circles. . . .” They both laughed. Afterwards, the woman told me the experience enabled her to see the world from her own perspective, but from a diferent place, and to see the world from Madame Witch’s perspective. Upside down, around, and around. Many people told me that they felt connected to Madame Witch and comfortable in her presence. “It was almost like a dialogue between us.” Or they described “a porousness, a coming together.” At the same time, almost in the same breath, they noted their own, and Skye’s vulnerability: “I felt protective.” In this sense they mirrored my response to Madame Witch (and Skye-Fox, and Skye Saxon) and her work – feeling fascinated, connected, as though I was witnessing some kind of mind-reading, folk-empathic exchange. But then, at the same time, I  was ever on the lookout for exotifcation and voyeurism, particularly from myself, in the way I represented Madame Witch (and Skye Saxon) and her work. “I think it’s incredibly generous of her,” someone told me after their reading. “It’s an ofering . . . to get a diferent perspective.” But then she paused, continued, “It’s interesting isn’t it, how it’s in the context of the art world, and how the art world. . . .” She paused, choosing her words carefully. “It’s something really special, and something that needs to be taken care of. Because the art world so easily co-opts things that it thinks are of the moment and relevant.” One man was hesitant to have his cards read at frst, but then he realized, “She’s obviously investing a lot of herself into this. So, I think that’s my responsibility, as another artist, to understand that, and to participate.” You are The Serpent You’ve been blushing but Don’t feel like you’re gonna get turned to stone Don’t get that cold shoulder feeling Patch something up in the relationship I brought a few books with me to Carriageworks that I barely read. One was The Snake Book: A Breathtaking Study of Beautiful Snakes from Around the World. I used it to hide printed sheets of paper – ‘participant information statements’, to go through with visitors before I recorded them.

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Skye Saxon, The Serpent, 2020, ink and pencil on paper, 15cm × 10.5cm.

Source: Photo courtesy the artist and Studio A

Another was Louise Bourgeois: Drawings and Observations. There’s a drawing in this book that looks a bit like two witches’ hats, one upside down and almost touching the other. Bourgeois called them spirals and wrote, “This is the toi and the moi. You see, the spirals seem to be isolated. They exist only through the fact that they are reaching” (Bourgeois & Rinder, 1995, p. 130). Explanation

Many people recognized Madame Witch’s tarot reading as a way of understanding Skye Saxon’s creative work. Many people asked Madame Witch for more information – How did you draw that? What did you use – pencils, pen? “Both.”

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Sometimes, they wanted to know more but didn’t know how to ask her. Skye tends to take questions literally and may not expand on something if she’s not in the mood. “I guess my only uncertainty was whether she wanted to be engaged in that process of [explaining] her art, or if she didn’t want to, like she wasn’t able to talk more about it, or didn’t want to,” one person told me. In a similar way, a woman confded, “I was expecting . . . I’m not sure if this is my bias on how tarot readings work, or interacting with people with

FIGURE 8.8

Skye Saxon, The Lion Strength, 2020, ink and pencil on paper, 15cm × 10.5cm.

Source: Photo courtesy the artist and Studio A

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diferent, sort of, neurodivergent capabilities,” she corrected herself, “perspectives, but I guess I was waiting for an explanation. And Skye kind of read into the cards, but not in a way that I was expecting.” I return to Sontag, who told us to return to the sensuous surface of art. Pencils, pen? Both. The feel of her velvet hat. What more can be explained? Let’s suspend our expectations that art must perform some ulterior work, which the artist uncovers in their statement or that the curator unpacks in their wall panel. But I can’t stop reading into things. “Have you ever done your own tarot reading?” “Probably not. I probably shouldn’t. I defnitely probably shouldn’t. Don’t want to get cursed or anything!” Encounters

Another of the books I brought with me to Carriageworks was Encounters: Two studies in the Sociology of Interaction, by Erving Gofman (1972). He writes about diferent types of interactions that occur in the social world – focused and unfocused. In an unfocused interaction, two strangers across a room might “check up on each other’s clothing, posture and general manner, while each modifes his own demeanour because he himself is under observation” (p. 7). In a focused interaction, on the other hand, people agree to come together in the pursuit of a shared task – a conversation, perhaps, or a game. Another word he proposes for this type of interaction is ‘encounter’. He calls it “a natural unit of social organization” (p. 8). Someone told me, “The tarot reading is such a peaceful encounter that gives some structure for getting to know someone. There’s a focus, you’re not just talking to each other.” I was making the tarot reading become something else – I was making it into an encounter, into a socially benefcial unit of social organization. I tried to stop. *** “The Lion Strength does represent strength, it also represents a cheekiness, cunningness, and playfulness. It’s telling you to look before you leap, so you don’t pounce into a pole or a brick wall . . . but if you do pounce into a person and you know them, then, maybe they will like it! If not, oh well, just say – hey, it’s my Lion Strength, I couldn’t help that!” You want The Fool It’s OK to play The Fool It’s OK to be The Fool The Fool will guide you on a crooked path No matter how long it might take

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FIGURE 8.9

Skye Saxon, The Fool, 2020, ink and pencil on paper, 15cm × 10.5cm.

Source: Photo courtesy the artist and Studio A

Primal envy

At my writing table I  sat with a young man and woman, both ‘creatives’. They spoke of envy. The woman said, “You can kind of tell it’s what’s been in their mind and they’re immediately getting it out and onto paper.” (Matthew Calandra had been drawing Madame Witch in her castle in the other room.) She compared this to her own practice. “Whenever I do something,” she said, “it is so incredibly premeditated.” The man spoke about scribble pads at Ofceworks, about drawings from mental institutes. He used the word ‘primal’, but then he corrected himself. He explained that he had been following a kind of stream of consciousness as he spoke to me, but that he didn’t want it to come out as though he thinks “that there’s nothing in between, [that] it’s just this direct primal thing”. He referred to Picasso and the modernists. He didn’t use the word ‘primitivism’, but that is what he was reaching towards when he described Picasso’s conception of African art “as this primal expression, just like ‘blah’ or something. But it’s not like that. Or that’s one aspect of how you would interpret it from an outside.”

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We were thinking things through. Other people used words like ‘honesty’ and ‘authenticity’ and ‘raw’ to talk about Madame Witch’s art. These words can also very easily slip from admiration into infantilization or othering. But then again, why not celebrate and give thanks for the child-like wonder and playfulness that Skye does embody in her work? For example, someone told me, “I love the tepee play area. Unlike coming to an exhibition where an artist is fabricating that, to talk about childhood play and using it as a metaphor for this and that . . .. I think this is just more honest and powerful.” Refecting on this here, I began to get myself into a pickle. I began to invest words in categorical distinctions, for example, between the sophisticated conceptual propositions of a ‘professionalized’ artist and the authentically playful, unmediated expression of someone like Skye. This is a well-versed distinction in the history of texts on Outsider Art. For example, Lynne Cooke (2018) has written: As an intellectual construction outsider art is founded on assumptions and creative and cultural projections that infer in the work emphatic separation from socio-cultural infuence and diference to normal artworld practice, on the grounds that relatively unmediated creative outpourings reveal more truthfully the things of existence. (p. 12) In reality, as always, things are blurry. Better to come back to the particular: to Madame Witch (a.k.a. Skye Saxon, a.k.a. Skye-Fox), and to the “creative” who sat at my desk, who told me that she felt weighed down by decisions. She was always wondering what she would be able to say through her choices of image or composition. Sometimes, she would go for many months without making at all. She saw, in Skye’s work, a kind of fow that she wished she could enter. “I noticed a stark contrast between her form of art-making and mine,” she said. She wanted to be clear that she wasn’t saying, “She is someone who is ‘the other’ and I  am not.” She was simply noting the diferences in their practices, with something (again) approaching envy. Climb down in

So if you or night come in the moonlight shining the cards, relax, listen, full of a good feeling digging a wonky path. The Fool will light your darkest, and the Magician represents what happens. Stay relaxed. Seriously if you could be your path it could just loosen the Wheel of what you see.

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Don’t blame me. You were once a way to patch something good. Stay in the deep breath it doesn’t mean everything is a step back. Go out of a ladder to climb down in. “What do you reckon Madame Witch? The computer wrote this from your words.”4 “It sounds like something I’d say.” Flavia Dujour

One day, Madame Witch and I met a woman called Nola who had devised a fctional art world, inhabited by a small group of artists and their agent. Nola had written about the work each artist had made. “It’s truly conceptual,” she told me. “In the sense that, to me, the idea is the art.” For example, in another room of the exhibition at Carriageworks, there was a pile of clothes and a wall label. Flavia Dujour, the wall label explained, spent one year wearing only discarded clothes picked up from the streets. This was all fction. My interest was piqued for many reasons, but mostly because I saw in Nola’s work an interesting parallel with Skye’s practice of devising characters. In fact, it was not a parallel but a perpendicular. For example, when I spoke to Kylie Madonna (a.k.a. Gabrielle Mordy) about this later, she reminded me that a key barrier for artists with intellectual disability is that their work isn’t considered conceptual enough, in an art world where the concept behind a work is often more important than the work itself. I made sure that Nola had her tarot read by Madame Witch, and then recorded their ensuing conversation. They sat on the little platform underneath Matthew Calandra’s drawing. I sat on the foor beneath them. I watched, but sometimes I intervened. For example, I encouraged them to tell each other about their characters. “I have a steampunk by the name of Katerina,” Madame Witch explained. “Katerina has a magical whip that allows her to do all sorts of things.” “That’s great, is she like a super-hero?” Nola wanted to know. “She runs a steampunk-styled circus. The keeper keeps the characters in line. Occasionally, if they get out of control, she cracks out a whip and everyone thinks ‘oh, I’m suppose to be cooking now,’ or ‘oh, I’m suppose to be sewing up your costume.’ Or, whatever.” “She keeps them all under control. She’s a little bit like Des’ree; they should meet some time. Des’ree is a bit intolerant of other people’s silly attitudes . . .” (Des’ree does big public artworks, which are so dangerous that she’s never had a single accident because everyone is too afraid to go near them.) “And then there’s Wil,” I interjected.

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“There’s Wil, he’s a Marsytopian,” Madame Witch explained. “What’s that?” Nola asked. “Marsytopia is a planet.” “You mean like Mars – M – A – R – S – Utopia? How do you spell it?” “Argh, I don’t really know how to spell it,” said Madame Witch. “Ok, well, that’s what it sounds like anyway.” “It’s like taking Mars, making it a bit bigger, and turning it into a living planet.” “And so, it’s a perfect place, like Utopia?” “Kind of . . . everyone has their ups and downs, their good days and bad days, their hiccup days . . . Wil has two friends. One named Fats, who’s a big gutsy guy. He ate the engine of the spaceship one day. It was made out of lollies.” “He ate it! That’s a bit perverse, good, I like that!” said Nola. “We did manage to get home eventually. Brainiac, on the other hand, is a bit arrogant. He foated above the height he was supposed to be at . . . he got incinerated in the furnace.” “Scorched. Did he get totally incinerated?” “He got badly burned.” “Is he fnished?” “No. So they turned of the incinerator, got him out, put him in a block of ice.” “As you would.” “And when he fnally thawed out of the block of ice, they tried to stitch him up, fx his brain and everything.” “Good luck! If he’s silly enough to eat the engine in the frst place it makes you wonder, doesn’t it?” “Yeah. He thinks Wil’s going to be the guy who ends up marrying the princess, but Wil’s going to be the guy who plays the role of the hero.” “Yeah, this is good. This is kind of like free play with the characters, isn’t it?” Nola said. “I’m working in a very restricted way, which of course the purpose is, but I really like this. There could be moments of more levity, I think, in what I’m doing. More play. Let it run a bit, but then pull it back, as De’sree would. She wouldn’t be able to tolerate it. [It’s] according to what the characters are able to tolerate really . . . if they couldn’t bear something then it can’t be done.” “Yeah, my characters like to hang upside down and stuf like that,” said Madame Witch. “Yeah, they kind of move around in space more freely than mine. Mine are very . . . the constraints of their practice really work on them. Which is the point of what I’m doing. But it’s a diferent approach. It’s good. I think it’s terrifc.” Afterwards, Nola told me, “It’s the signifcance of diference, isn’t it? People bounce of each other. Like in my art world, there are all these diferent practices by artists. She [Skye], for a minute, was almost scooped into my world, in my mind. . . .”

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FIGURE 8.10

Skye Saxon, The Hermit, 2020, ink a pencil on paper, 15cm × 10.5cm.

Source: Photo courtesy the artist and Studio A

What you get is The Hermit In the darkness of hours In this sticky situation He will point you in the right direction So you don’t end up digging a hole for yourself The sympathetic gaze

Most people don’t know how to talk about disability and diference. This isn’t surprising. People struggled to fnd words to describe their sense of Skye’s difference. Some people said stigmatizing things. “It’s so cute, she is so sweet. . . . Does she have a mental . . . uh . . . mental difculty?” one woman asked, approaching me at my desk.

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I tried to explain Studio A, disability, talent, interdependence, the need for support. The lady told me she knows someone who is disabled at her church. She mimed him rocking back and forth. “I feel sad for him. I don’t know what he has. But I think he is happy. They are happy in themselves.”

FIGURE 8.11

Madame Witch installation view, Carriageworks, 2021.

Source: Photo: Chloe Watfern

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What should I have said in return? Someone else confded, after watching Madame Witch on video (without meeting her in person): “She’s fascinating, isn’t she? She’s got the most beautiful face and smile. Her whole body is diferent for each card, and so is the way she explains each card. So, she was looking a bit pensive and a tiny bit anxious for the card after the lion, I think maybe it was the moon. It was about absolutely needing help, and she actually portrayed that. I  thought she’s maybe needed help at some point in her life. And the next one was the one who’s mischievous, so she’d become mischievous and then she’d become serious again. So, you can see that each one she’s done possibly to help herself through each situation, because you can see that she’s had some sadness in her life.” These are examples of what others have termed ‘the sympathetic gaze’, a perspective which “suggests that this work is compelling and valuable only relative to biography” (Donahue & Ortiz, 2006). Kylie Madonna has often been faced with this ‘sympathetic gaze’. For example, she can’t count the number of times that she has been asked if she is an art therapist or told how good she is for helping people with intellectual disability. She wants people to stop in their tracks and think ‘wow’, rather than “isn’t that great, they have an intellectual disability, and they are making art.” She wants the work to break through that response by virtue of its quality, and through its exhibition in mainstream contexts without apology or caveat. I could twist this on its head by saying that the quality of Skye’s work performed a social function. Because I have cold hard evidence that many of her audience members elided stereotypes about disability, or cognitive diference, and instead engaged with Skye Saxon as an artist, on her level – literally eye to eye, sitting on cushions she had made by hand. But as ever, I feel uncomfortable over-analysing. Does it somehow make me complicit in the sympathetic gaze? Do I expect that, because Skye has a disability, her work must perform a function by addressing stigma and discrimination in the broader community? Why must she, and her work, bear that burden? So instead, I’ll share this little interchange, which may or may not be meaningful. “What’s in this for you?” Someone asked Madame Witch after her reading. “Nothing. I’m personally doing this for fun.” “Well, fun is something. Fun is really something. But it’s also serious for you too. Because it’s your work.” “Yeah, if you could call it that. I call it fun.” It is what it is

As patternmakers, we humans are always looking for shadow meanings – trying to pull things together into a narrative of some form or other. LeGuin (1989) writes beautifully about this in ‘Some Thoughts on Narrative’: Living creatures go to considerable pains to escape equality, to evade entropy, chaos, and old night. They arrange things. They make sense,

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literally. Molecule by molecule. In the cell. The cells arrange themselves. The body is an arrangement in spacetime, a patterning, a process; the mind is a process of the body, an organ, doing what organs do: organize. Order, pattern, connect. (p. 41) Things might come to us at frst as disparate sense-impressions, tableaux vivants, one card at a time. But very quickly we link them together. This is who I was, this is who I am, this is who I will be. . . . Or, this is what they are really trying to say, beneath the surface of our interaction. Sitting before a tarot reader, we desperately want the cards to connect in some way and for them to tell us something meaningful about ourselves – we look for meaning everywhere, and often fnd it, if we are lucky. A tangential parallel? Rosaldo (1989) writes about his time spent with the Ilongot people of the Philippines. After years of feldwork, questioning, and analysis, he still hadn’t arrived at a satisfactory explanation of their head-hunting practices – literally severing the head of a member of a neighbouring tribe after the death of a loved one. The people themselves had told him it was about grief and rage. He looked for explanations based on exchange theory, retribution, social order . . . But in the end, he settled on grief and rage, those simple elemental forces of human experience, as the best explanation. Where am I going with this? I have spent all this time with Skye asking her about her art, about what it means to her, about what it means to make. And she has given me all kinds of wonderful, imaginative, and playful answers – she has described herself inhabiting a character to the extent that she can feel the whiskers at her nose, the fur of its body on her skin; she has described herself unlocking the keys to her brain, opening up its lid and jumping in. In her tarot readings, she almost always described her cards as playful and fun. Play, fun, fur, skin . . . There’s nothing simpler, and nothing more complex, than those elemental drivers of human experience. Thinking in pictures

At Carriageworks, again, we were sitting around the Running Dog table: me, Madame Witch, and my godmother Julie, who had just had her Tarot read. Skye had begun to explain to Julie, with my encouragement, some of her other characters – the sweet tooth gang (and the sour tooth gang too), Skye-Fox, Katerina the Steampunk Ringmaster, and Midnight. I told Skye how envious I  felt of her imagination, “and then I  kind of steal your imagination when I write about your work. Which is a funny thing to do. Not steal it, but I . . .” “I don’t mind,” said Skye. “Not steal it, I quote your imagination.” “So, you’re capturing it,” Julie said.

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“In a net?” I asked. “It can escape from a net,” said Skye. “But they do escape . . .” “It could be like a huge, big sail of muslin and all of the words just gather up in the sail,” said Julie. “Words . . . I wouldn’t say words,” said Skye. “What would you say?” I asked. “Pictures.” “Pictures,” I repeated. “A lot of them can move like puppets.” “But you tell them in words sometimes?” “But it’s much more embodied?” Julie asked. “It’s like watching giant feet walk past and you say ‘aaargh I hope I’m not underneath one of those giant feet,’ ” Skye explained. “Don’t squash me!” We laughed. “Heeelp! Don’t squash me! Giant foot . . . just walked past.” Later, I walked Julie out up the steps and onto the street. She told me she wanted to talk more about porousness, but she didn’t know if that word would mean anything to Skye and then if it doesn’t mean anything to her, what’s the point? *** Autistic writer and scientist Temple Grandin (2006) opens her autobiography with a clear, succinct insight into her mind: I think in pictures. Words are like a second language to me. I translate both spoken and written words into full-color movies, complete with sound, which run like a VCR tape in my head. When somebody speaks to me, his words are instantly translated into pictures. Language-based thinkers often fnd this phenomenon difcult to understand.5 *** While I was driving home from Madame Witch’s castle, someone on the radio was talking about clouds. About how clouds are like our emotions, they move between visibility and invisibility. About how a cloud forming in a blue sky is a bit like a thought forming in an absent mind. I think this may be relevant. I think this quote from John Berger (2015) may be relevant too: “We who draw do so not only to make something observed visible to others, but also to accompany something invisible to its incalculable destination” (p. 11). *** When mum read an early draft of my writing about Skye, she told me she had a great idea: Why don’t I make two books? One of them should be made from beautiful thick pages and bound in cloth. It should be completely blank.

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Skye Saxon, Magical Handwriting II, 2019, gel pen on paper, 49.5cm × 25cm.

Source: Photo courtesy the artist and Studio A

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Notes 1 This chapter is an expanded version of a piece I published with Running Dog (Watfern, 2021). Reproduced with permission. 2 I had requested this confguration, a request that was, delightfully, approved. 3 These found poems are made from a transcript of Skye’s tarot readings. I truncated and lineated them. 4 An editor from Running Dog visited and showed us how to use a Markov Chain on a website called Glass Leaves. I put in the transcript of Madame Witch’s tarot readings and from the results, made this poem. 5 Temple Grandin is a controversial fgure in the neurodiversity movement, as someone who has used ableist and pathologizing language to talk about autism and advocated prevention of “severe forms of autism”. I quote her here without endorsing those views.

References Berger, J. (2015). Bento’s sketchbook. London: Verso. Bourgeois, L., & Rinder, L. (1995). Louise Bourgeois: Drawings & observations. Boston, MA; New York; Toronto; London: Bullfnch Press. Cooke, L. (2018). Outliers and American vanguard art. Chicago, IL: University of Chicago Press. Donahue, A., & Ortiz, T. (2006, January 20). Discussing biography. Retrieved from www.disparateminds.org/blog/2016/1/18/on-biography Gofman, E. (1972). Encounters: Two studies in the sociology of interaction. Harmondsworth: Penguin. Grandin, T. (2006). Thinking in pictures and other reports from my life with autism (2nd ed.). New York: Vintage. LeGuin, U. (1989). Some thoughts on narrative. In Dancing at the edge of the world: Thoughts on words, women, places. New York: Grove Press. Rosaldo, R. (1989). Culture  & truth: The remaking of social analysis. Boston, MA: Beacon Press. Watfern, C. (2021). Madame Witch. Running Dog. Retrieved from https://rundog. art/projects/madame-witch/

9 PROJECT ART WORKS Illuminating the Wilderness

Sharif: I

Project Art Works’ flm Illuminating the Wilderness (2019) opens with the artist Sharif Persaud. He is singing Grace Jones, “Pull Up to the Bumper.” Then, he speaks. “Hello Tim, oh, good morning Tim. Hello Tim, how are you today?” Tim Corrigan, the creative director of Project Art Works, answers, “I’m fne, thanks.” Sharif continues, “I’m going to tell you the facts though Tim. Firstly, I’m not getting married. Secondly, I’m not having kids. Third, I’m not smoking. Fourth, I’m not drinking any alcohol. Fifthly, I’m not having any students. Sixthly, I’m not getting a job anymore and Seventhly I’m not joining the army anymore as well then Tim. I would rather be single and unemployed though.” Sharif and Tim are somewhere in Scotland. In Glen Afric, to be precise. There are mothers and fathers and sons and daughters there with them. There are support workers too. It rains a lot, and the sound of the rain – on leaves, on grass, on water, on raincoats – is very relaxing, was very relaxing for someone like me, watching from a darkened room in Liverpool, where the flm was screened on the fourth foor of the Tate as part of a larger installation taking over the entire level. I settled into sound – the occasional grunt, a meander of conversation, footsteps coming and going, wind through trees. I  let the DOI: 10.4324/9781003466703-9

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sounds wash over me, cultivating a kind of calm bafement, allowing myself to be with these people and the place that they were exploring. But in that opening dialogue, I was also alert to the meaning of Sharif’s words, his ‘facts’: “I’m not, I’m not, I’m not.” Not going to get married, not getting a job. And I thought about all the limitations that have been imposed upon Sharif because of his disability. I remembered meeting Sharif in the studio under the railway arches at Hastings less than a week earlier. Then, he was sitting at his desk facing the door. He likes predictability, to know where everyone is and who everyone is. So, this position meant that he could greet each person as they entered the studio and be aware of all the comings and goings. Usually, Tim will help Sharif transition into his studio day between 10 and 10.30am, when everyone else arrives. But because Tim was away, in Liverpool, he had gone upstairs to the ofce and made himself a hot chocolate with lots of multi-coloured marshmallows. He had a mask of the English comedian Al Murray, very well worn, that sat for the most part on top of his head but which he would sometimes bring down over his face. He had a lot of straws on a small table to the side of his desk. Some of them had been made into cars and

FIGURE 9.1

Project Art Works, Illuminating the Wilderness, on location in Glen Afric, 2018.

Source: Photo courtesy the artists and Project Art Works

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a house using sticky tape. There was a bag next to his chair flled with printed out pictures, some of himself wearing a mask, and other masks too – was that queen Elizabeth? A box of pencils sat to his left and there were sheets of paper in front of him. Over the course of the morning, he drew things at a rapid speed while talking even faster. Rachel, a facilitating artist, asked him, when each drawing was fnished, “Shall we pin them up on the wall so that everybody can see them?” One at a time the drawings went up on the wall. There was Sharif at the Tesco supermarket going down the escalator. There was Sharif dreaming on his bed; dreaming about lights, and there are the lights but when you look at them they make you sneeze. There is Sharif sneezing on the pier in the wintertime and his father is also sneezing beside him. “This is Sharif in the cold weather on the pier,” he told me. “Hastings Pier with his father. He blows his nose gently with a tissue so that it doesn’t do too much damage. Do you have a cold? Have you ever had a cold?” He asked everyone, including me. “Do you have a fu? Have you ever had a fu? Do you have allergies? Do you get hay fever?” There were some nods and murmurs. “Any dreams lately Rachel? Any nightmares?” “Can we talk about it at lunchtime?” She said, and “What should we do next?”

FIGURE 9.2

Sharif Persaud, Untitled, 2017, acrylic and ink on paper, 2.2m × 1.5m.

Source: Photo courtesy the artist and Project Art Works

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“I’m not going to draw my dream about vomiting because that might cause anxiety, mightn’t it Rachel?” “It’s OK Sharif, take your time,” she said. “We could draw something else, or we could go and prime the canvas?” “I’m going to draw.” “Sharif is good today,” Rachel told me later. “Sometimes you can tell he is quite distressed, doesn’t want to access the studio. He’ll spend his time in the toilet, talking to the sink. You can hear him talking in there now.” Ecological selves

Illuminating the Wilderness is one flm in a series of flms by Project Art Works that have aimed to record the experience of neurodiverse people as they pay attention to the world. In other flms, people explore the pier at Hastings – creaking poles, water softly lapping, construction work, hands knocking along balustrades; or a church in a feld – aerial shots of a group walking in line through wheat, echoing empty altar, windows onto grass. These flms have taught me how to pay attention. I looked with Gabriella beneath a rock and noticed the intricate threads woven by a spider. We will meet her soon in the Project Art Works studio. I listened to Sharif ask Dan, “Has your cat had any dreams before though, Dan?” And I heard him respond, “I tried to ask it, but it wouldn’t tell me. It went ‘meow’.” I listened to the rain and wondered at it, wondered at what it might sound like to someone else. “I love the clattering sounds, the staccato, the ripples, the appoggiatura and trills, the sudden drop in levels, the pitter patter of rain like crisps dancing inside a foil coated box,” wrote Dawn-Joy Leong (2020). “It unpacks our meanings, our world, on our terms”. What I love is the way these flms capture the dance of lives lived together despite and often because of diferences, and the way they gently acknowledge how fraught this togetherness is, but how necessary, and how beautiful. To return to a refrain I have been chanting throughout this book, I love the way a flm like Illuminating the Wilderness helps me to understand our ecological selves, illuminating how a group of people make sense of our wild and precious lives in diferent but interconnected ways. To do this required a careful and diligent scafolding, much of which remained outside of the lens of the fnal flm: itineraries, risk management, targeted support, and ethical choices concerning consent and representation. It also required a kind of freedom, a radical openness to the many ways of being together in the world. The dance is in the balancing of the two: scafolds and freedom. I am reminded of the dynamicist model of cognition as an ‘autopoietic system’: the constant negotiation of inside and outside, “of selfhood and a

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Project Art Works, Illuminating the Wilderness, 2019, flm still.

Source: Photo courtesy Project Art Works

correlative world or environment of otherness” through recursive, interdependent processes (Thompson, 2007). Freedom and constraints. A meshwork of “selfess selves”. The autonomy of any cognitive system – and its ability to sense, think, move, make – is a function of its interdependence. To put it a diferent way, I turn to Project Art Works again in this chapter because their collective work has helped me pay attention to people and place, to their interdependence, and to the wild and precious lives of some of those who are enacting this. Here, I try to evoke these messy interconnections through a mode of writing that brings disparate elements of their practice into conversation. They looked like trees

On the fourth foor of the Tate Liverpool, windows looking out to river and port, people came and went, as they do in art galleries. Posing for photos. Pausing for seconds, perhaps minutes. There were long scrolls of paper hanging down from wire stretching across the ceiling. There was the sound of rain, or singing, or mufed talking – vocalizations – coming from a darkened room at one end of the space where the flm Illuminating the Wilderness was playing. Once, I tried to sidestep the edge of a scroll, but my bag nicked it slightly, leaving a small, almost imperceptible dent. As I walked through the forest of paper, white turned to black scrolls covered in dense scribbles of charcoal. They were beautiful but at frst unintelligible: a lake, a forest? Eventually, I arrived at the workshop, the working studio, at the far end of the space.

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Three artist facilitators – Sara, Annis, and Anne-Marie – were getting ready for a group of people to arrive, taping a large sheet of paper to the foor. Sara used to be part of the core team at Project Art Works but had taken a break to focus on her own painting practice. Anne-Marie helped casually at these kinds of public workshops and had worked only occasionally in the Hastings studios. At the time, Annis was the lead artist during a weekly studio day at Project Art Works and had a socially engaged practice of her own (you’ve heard from all three of them before, in earlier chapters). They were all a little nervous. “It’s the anticipation,” said Sara. “You don’t know who they’re going to be, how it’s going to unfold.” “It’s like getting ready for a performance,” said Annis. A group of people from Blue Room arrived, somewhat rambunctiously. Blue Room is an inclusive arts programme for learning disabled and neurodivergent adults hosted at Bluecoat, a Liverpool contemporary arts centre. The Blue Room artists were confdent, immediately taking control of the room. “What’s this white paper for?” one of the men asked as they all took their seats around the long scroll taped onto the foor. “I’d love to draw on there.” “I would as well,” someone else chimed in. “I can’t wait to see what comes out.” A young man danced across the white. Annis quickly paired of with someone called Donald. They spent about half an hour moving back and forth, back and forth with their willow charcoal on bamboo poles, in tandem, Annis mirroring Donald’s movements. Near the end Donald explained to me, “We did lines, all kinds of lines . . . diamonds, hearts, circles, oblongs.” Annis continued, “We went all around, didn’t we?” “Yes, from there to there to there to there,” he nodded, pointing to the thicket of scribbles across the foor. When it came time for the session to end, the young man danced again across their collective drawing. His feet made prints on the surface. Later, we would take the drawing down the goods elevator and through the loading room onto the paved riverside, and seal it with an adhesive spray. It was windy, so the spray blew up into our faces. The security guard who let us out looked on with arms folded across his chest, “You know that painter, Pollock? This is a bit like that . . . I reckon they’re masterpieces.” Earlier, the Blue Room artists had assessed the drawings already hanging in the big white cube of the gallery. I like it, they said. This one looks like fre – there, in that square. This one looks like waves when you go swimming; like a butterfy; like someone fshing for a whale; like a dragon; like ghosts; like peoples’ memories; like seeing things underwater – look, there. Annis walked through the hanging paper with Donald. They gestured together at the scribbling lines, tracing the movement of the charcoal with their hands. Donald thought that they looked like trees.

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Illuminating the Wilderness drawings installation, Tate Liverpool, 2019.

Source: Photos: Chloe Watfern. Photos courtesy the artists and Project Art Works

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FIGURE 9.4

(Continued).

That’s my son

To walk through a landscape is not easy for Paul Colley, the son of Kate Adams. Kate elaborated: Without the assimilation of neurotypical constructs – like, what things are and how they work, the ‘rules’ – the world is confusing and wondrous every

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moment of every day. A shadow on the pavement is not to be trusted. Is it a hole or a shady fssure? Whatever. It needs to be manoeuvred around. Spatial transitions. Very tricky. Doorways, portals and thresholds between one world and another; without knowing what a room is for or what it holds; imagine. Just giving yourself up to this. Trusting. Neurotypical minds tend towards focus blindness and flter out stimulus and minute observations when absorbed by intention. In Scotland, in Illuminating the Wilderness, we see Paul walk slowly down a rocky hill. Watching, I imagined what the hill might look like from his perspective. I  imagined giving myself up to a flood of sensation: light breeze, bump of a root, shadows from trees, a hand at my elbow. Could I give myself up completely? Could I forget the names I have been taught for things? Is that what it is like to be Paul? It does not look easy, but he has help. *** Once, I sat down for an interview with a couple who had just watched the flm. Kate was nearby. At some point she jumped in: “Part of the reason for doing the flm is to show that there’s nothing scientifc or particularly difcult about really loving or being with someone with complex needs.” “Yes,” said the woman, “and the guy with the lovely smile .  .  .” She trailed of. “That’s my son Paul,” Kate said proudly, her labour no longer invisible.

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Project Art Works, Illuminating the Wilderness, 2019, flm still.

Source: Photo courtesy Project Art Works

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Gabriella: we spoke about the trees

Rachel sat very close to Gabriella, their knees touching. Sometimes, she held Gabriella’s hands, ran her fngers along her palm. Rachel drew while Gabriella worked on her little vibrant pipe-cleaner creatures. Rachel was drawing a picture of a sheep from a cartoon that Gabriella had given her. “What’s your favourite thing about sheep?” Gabriella asked. “Oh, their funny noses,” Rachel touched her nose with her index fnger and ran it down to the curve above her lips. “What’s your favourite kind of sheep?” “I feel embarrassed,” Rachel admitted. “I don’t know enough about sheep to know the diferent breeds.” Gabriella talked Rachel through the diferent species of sheep. Gabriella had piles of multi-coloured pipe cleaners, plastic toys like those you can win at the arcades on the piers, and things scavenged from the beach. She used a hot glue gun to stick them together. On a bit of crab shell that Rachel had found on the beach she built up a big head out of hot glue. When she had fnished, she stuck a single googly eye at its centre. There were lots of googly eyes laid out on the desk in front of her. Her mum, Mandy, came in at the end of the day and put two googly eyes over her closed eyes and put her glasses back on. Rachel took a photo. In a journal Rachel keeps about her work with Gabriella, I read an entry dated 26 October 2018: “You said that you had ‘so much excitement’ today that you didn’t know what to do with it. You spoke about your hatchlings and how the egg changes colour as an indicator that the egg is ready to hatch from incubation. [On Thursdays, Gabriella works at a farm where she helps look after the animals.] You created ‘clifs’ using straws in your forest scene.” On the opposite page she had written, “We spoke about the trees in Glen Afric, the straight pines and the silver birch trunks.” During their trip to Scotland to flm Illuminating the Wilderness, Gabriella and Mandy and Rachel stayed in a chalet together. “I learned so much,” Rachel told me. “About their relationship . . . it made me realize the incredible adaptive qualities that people have, because its every day for them, every minute of the day they’re having to adapt, they’re having to modify their thoughts, cope with change, it was actually really revealing for me, how brave people are.” *** “I’m very intrigued,” I said to Gabriella’s mum, Mandy, as we sat around the kitchen table at Project Art Works. “How do you understand what Gabriella’s doing down there?” I gestured downwards to the art room. She answered, “I’m always saying, ‘I’m not arty.’ So, I kind of don’t get it. But Tim tells me that’s not the case. What did he say to me? He said something like, ‘that’s not a good attitude.’ But then I said, ‘well I like dark skies,

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Page from Gabriella and Rachel’s process diary.

Source: Courtesy the artists and Project Art Works

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Gabby R, Untitled, 2014, pipe cleaners, 14cm × 21cm × 9cm.

Source: Photo courtesy the artist and Project Art Works

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and seagulls,’ and he said ‘that’s art.’ So, what do I understand? I understand that Gabby fnds it therapeutic, calming, she feels valued, part of something. I  think she feels understood, and that she’s amongst friends, so she can be free, she can be herself. And I think she thoroughly enjoys it and it’s the most motivating activity that she has in her week, that gets her up before me, gets her ready, and makes her say ‘come on, we’ll be late.’ So, it’s good.” What do you see?

People saw all kinds of things in the drawings at the Tate Liverpool, like the one that Ronald and Annis made, and the ones that Ronald thought looked like trees. For one woman, a drawing evoked for her a particular place, a particular forest, and she described walking through it, arriving at a lake, seeing the birds fy away and then land again on its surface. Often people just saw the drawings as scratchings and scribbles. And that’s what they were. People having fun across a sheet of paper. People making their mark. And those marks were beautiful. “You can’t sell it,” one woman told me disapprovingly. Another man asked me, “Are the drawings expressing anything? Or do people just turn up and do whatever?” Tim jumped in, “I think of them as conversations. But they all start with scribbles.” The man seemed to get it, nodded, “It’s how they want to scribble.” I asked him to elaborate. He said, “The product, it didn’t all relate to me. But it’s understanding where it comes from that’s really wonderful. It makes you think, doesn’t it?” *** Once, I sat down for an interview with a woman who had just watched Illuminating the Wilderness. It took her back to a part of her life that she loved, she told me. She remembered teaching young people with learning disabilities in rough, inner-city London. They lived in awful high-rise blocks with broken lifts, she said. “They’d never seen the sea. They’d never walked in the countryside. They’d never done so many things.” At the school, they dug a huge great pond and brought the fre brigade in to fll it up. Later, in her classroom overlooking the pond, there was a shriek: “Look! Look what’s happening!” A black bird was washing itself in the pond. One of the boys had never seen a bird having a bath. *** In tangles of lines across a sheet of paper, I saw the wild. Looking into my children’s eyes, I see the wild. But this is taking the word ‘wild’ into the terrain

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of metaphor. We are, quite literally, running out of wild places. And not all of us are lucky enough to reach the ones we still have left. *** Once, I spoke for some time with a man in the quiet darkened room where Illuminating the Wilderness was playing at the Museum of Contemporary Art in Sydney. I found out all kinds of things about his life: the name of his cat (Kiska, a pure Russian Blue), his job (he had had it for four years and one month). I found out that he has spent a lot of time, in the course of his job, taking pictures of fowers in the Mt. Druitt area of Western Sydney. I found out that he has an acquired brain injury. “Everyone needs to get away from the hustle and bustle,” he told me. “You need to relate back to nature. I mean, I lay under a tree – under the green, large trees of the botanical gardens in Sydney. I was there having lunch and I lay on the lawn looking up at the leaves of the tree and I can tell you, I had a diferent perspective of my brain.” Later, he sent me an email. Then he sent me more emails; they had no words, just pictures of his paintings attached: a red zebra with a white mane, a pink pelican, Parliament House, a portrait of Prince, a portrait of his father, a portrait of three Labradors. *** “A horizon,” writes Thompson (2007), “is not a thing ‘out there’ but rather a structure of appearance. It therefore implicates or points back to the perceiver for whom appearances are so structured” (p. 35). In this sense, “the horizon of every possible horizon is the world” (p. 36). I think of Walter Benjamin lying on grass, looking up at the branch of a tree above his head, and using this experience to help articulate the aura of a work of art – “the unique phenomenon of a distance, however close it may be” (Benjamin, 1935/1969, p. 5). The wild is both further away and closer to us than we tend to imagine. What could be wilder than the consciousness of another precious life? The horizon of every possible horizon is the world. Tim

Tim Corrigan trained as a painter. Kate Adams was one of Tim’s tutors at art school. When, in 2001, Project Art Works won a grant to make a series of short flms to be shown in public spaces around the UK, they bought a camera. Film became more and more a part of what they did. Tim taught himself to edit. He worked freelance for a while – made commercials in London,

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edited an Israeli arms dealer’s home video collection (as you do . . .). When he returned full time to Project Art Works, he had become fuent in his own language of flmmaking. But he sees his practice as fundamentally about people, about being with people. There’s a kind of making, a material element, to that. He loves priming canvases. He likes the edges of things, their frames. He thinks the edges of a sheet of paper, or a canvas, aren’t that dissimilar to the frame in a flm – they are all containers for things to happen within. In his flming he often uses the still shot, the locked of frame, with people and things (a paintbrush, a body) coming in and out of it. Sharif: II

In Sharif Persaud’s flm The Mask (2017), which he made in collaboration with Tim Corrigan, Sharif narrates his own story. He is wearing his Al Murray mask as he walks along a car-lined street. “When I wear the mask,” Sharif says, “I ask people if they’ve got diabetes, I ask people if they’ve got high blood pressure, and if they’ve known anyone who had their leg amputated from gangrene. I ask people where they live and what type of house they live in and what door number they live at.” He says all the things he is obsessed with and all the things he likes, like fake sneezing. He does a fake sneeze as he walks along a dirt path beside pebbles beside the sea, heading north from Hastings towards the De La Warre Pavilion. In cross-cuts to Sharif in a darkened studio he talks to Tim. “Isn’t that right, Tim?” he asks, as he talks about when his house caught on fre. Sharif arrives at the arts centre at sunset. He meets Al Murray in a dressing room. He asks Al Murray if he has any allergies. He slowly takes of his mask. Al Murray is allergic to cats. “Have you ever had any dreams before, Al Murray?” Sharif asks. “Yes, lots of dreams,” he replies. “What do you have dreams about?” Sharif asks. “I did a show last night, and then I had a dream last night about the show in which I was watching the show while I was on stage doing the show at the same time and I forgot all the words.” Sharif is full of words; they tumble out quickly like a rap or a spoken poem: “dimples, freckles, watches, a dot on the kettle . . . Nanny coughing, Nanny sneezing . . . they had to change the kettle especially for me . . .. ” In the fnal seconds of the flm, Sharif stares at the camera. Mask of. *** Tim frst met Sharif when Sharif was still in school, but they frst worked together seriously during a flm project called In Transit (2010). At that time, Sharif was leaving school and heading into adult services – ‘transitioning’ into adult life. Project Art Works created thirty-six flms over a fve-year period, each in collaboration with a young person, which could sit alongside other

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Sharif Persaud, The Mask, 2017, flm still.

Source: Photo courtesy the artist and Project Art Works

‘evidence’ used during the Person-Centred Reviews and assessment processes with Social Services during transition planning. Often this kind of planning focuses on the negative aspects of a person’s support needs, emphasizing what they might fnd difcult, to enable them to get the right funding. “The idea was,” Tim explained, “to create flm portraits that would hopefully show something a bit more poetic about a person, to give a more rounded impression of someone.” Tim worked with Sharif over many weeks to make their flm. It is almost sixteen minutes long. It starts with a weather report. Then, footage of the calm seas of the English south coast. “Like the Mediterranean,” Sharif says, in charge of the camera, the horizon see-sawing. Always the person in the world, in the landscape. Sound of waves. Later, standing beneath a tree, Sharif tells Tim, tells the camera: “I’m Mr Sharif Persaud and I’m very obsessed with weather – hurricanes, tornadoes, cyclones, typhoons, what else? I’m very obsessed with . . . what’s it called . . . umm, jobs and hospital programs, drama, amputations, disabled people, and illnesses as well.” He walks his dog along a concrete path through a park. “Obsessions,” he continues, “means when you get to obsess so much, you get too interested in the same thing and you carry on having it in your head all day long and then when you carry on having it in your head all day long it starts to become an obsession. I like having obsessions. Defnitely.” He calls his dog. “Skipper! Skip skip skip skip skip skiii per!!” “Autism means you can get a bit anxious sometimes,” he continues. “Sometimes if you have really really severe autism you can have even more behaviour

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problems, you can start to become aggressive and things like that, and you can start to hit people. With mild autism you tend to laugh at things that are not funny. . . . Autism is what’s in your body. It’s a condition. It’s a disability. And when you have autism it can make you a little bit anxious sometimes. I’ve got autism, haven’t I? I’ve got autism too.” At the time they were flming, lots of things were unravelling for Sharif. He had been excluded from college. Resources and placements that had been set up for him broke down. Things got very tricky. A few months after they had fnished the flm, there was an incident and Sharif was sectioned into an assessment and treatment unit. “You go in, they strip you of your medication, they re-assess you,” Tim explained. “But the thing is, these places don’t operate as they should.” Sharif should only have been in the unit for a month at most, but it was over six months before he came out. When Sharif was released, his family reached out to Tim. Tim and Sharif began to work together again, one to one, in a Project Art Works programme called Creative Interventions – painting, drawing, flming, and just being together in the studio. One thing led to another. They continued to work together. Eventually, they made The Mask. *** Sharif scripts so much of his life, performing his conversations like a routine: “any dreams lately?” He will ask. “Any nightmares?” Sharif has a personality that people fall in love with, but it’s kind of a mask. It is a mask. It’s a way of protecting himself. Autistic people are often compelled to mask their behaviours to “ft in” with socio-cultural norms. Autistic masking can include forcing or faking eye contact and pushing through intense sensory discomfort. Not surprisingly, masking can cause exhaustion, anxiety, depression, and autistic burnout (Sedgewick, Hull, & Ellis, 2021). Tim wanted to go beyond the mask in his work with Sharif. For example, his physical mask of Al Murray is great in some ways; it allows him to go up to people and talk to them, but it also makes him vulnerable, “People fnd it funny and its curious, and it kind of makes him a slight spectacle when he’s out and about wearing it.” His family, Tim told me, are keen for Sharif to stop wearing it. “Our practice,” Tim explained, “has to be joined up with other areas of Sharif’s life . . . So, I don’t want to fetishize the mask, when at home they’re trying to go, ‘actually we don’t want it.’ It’s really important now that the next piece of work enables Sharif to put that to one side.” The last of Sharif’s masks are all crumpled, falling to bits. They are more sticky tape than mask. “Everyone loves Sharif,” Tim told me, everyone loves the performance he puts on, the things that he says. But that makes it even more important to treat his life ethically, to negotiate his story so that the one he depicts is not just the ‘façade’, the ‘mask’.

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Sharif Persaud, Untitled, 2015, acrylic on canvas, 41cm × 41cm.

Source: Photo courtesy the artist and Project Art Works

Why did he cry?

On the fourth foor of the Tate Liverpool, I  spoke to a small man with a mouse-like face, thinning dark hair with streaks of grey. I had seen him crying in the gallery earlier, after Tim had shown him The Mask in a small viewing room adjacent to the workshop space. First, he told me, he had watched Illuminating the Wilderness. His views about that flm were mixed, “because I found the people were unbelievably interesting, but at times I felt that the photography was intrusive of them . . . that the photography was possibly taking over from their experience. It was more, ‘let’s see what we think they’re doing and they’re thinking’ rather than they themselves were doing. I loved the section . . . I mean the young girl who loved to look at the minutiae of life and put her fngers in the spore . . . now

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Project Art Works, Illuminating the Wilderness, 2019, flm still.

Source: Photo courtesy Project Art Works

that was what she was interested in . . . it was showing her actual experience of the thing.” He was articulating something I  had heard from other sources, in other moments – a version of the voyeuristic critique of the flm. People were concerned that it represents people, and they do not represent themselves. Gabriella, holding the camera, flming an earthworm writhing its way across a bare bit of dirt, flming lichen, the shadow of her head, a rock overturned – that seems so much more clearly “her actual experience of the thing” than the other flmmakers’ framing of her experience. Those shots flmed by Gabriella, or through a go-pro attached to Paul’s body, give a sense of frst-person perspective. But the power of a flm like Illuminating the Wilderness comes from how it accommodates multiple perspectives. It captures the entanglement between people – mother, father, daughter, son, carer, artist, staf. It also shows, gently, quietly, through shifting points of view, the entanglement between self-representation and representation by another. *** The man who had cried on the fourth foor of the Tate Liverpool told me that he loved the young man, Sharif. But he was also terrifed for him. The man was worried about Sharif being thrust into the limelight. When I asked about his tears, he told me that they “were tears of irritation, and whatever else I can’t say. . . .” He continued, “Celebrity is very easy to get, and very easy to lose. And he could very easily become a celebrity. Because he has that ability and capacity and the words, but . . . when he takes the mask away there is that

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unbelievable sadness in him, there’s that unbelievable inability to communicate that he hasn’t got when the mask is there. And that’s a worry for me.” The man knew that Sharif would be having a major solo show soon at a public art gallery in Shoreditch, in the East of London. But he wanted to know, “what does he gain from that, where does he go from that?” I know that others share this concern. I have worried about it too: the risks of short-term celebrity, or of someone’s work (and the life experiences it may communicate) being shared for another’s gain. These aren’t risks only faced by neurodivergent artists, although perhaps they are exacerbated by communication barriers and power imbalances. Places like Project Art Works and Studio A are so special because they are always asking themselves these ethical questions too. In my view, the answer comes back to the fact that work is made in a supportive community that will continue, regardless of vagaries in public attention to it. Where does Sharif go? He returns to the studio under the railway bridge in Hastings. Sometimes he will shout at the sink, but often he will be at peace doing something that he loves. Consent

Art made during art psychotherapy is not usually shown; the art made in places like Project Art Works is. The distinction between public and private needs to be carefully negotiated with each maker. For example, some of Sharif’s drawings are very private and personal. Through them, he is often processing traumatic events or working through anxiety. What things are appropriate to share in a public forum like an art exhibition is something they try to discuss in the studio. But the boundaries of informed consent become ever blurrier with people who might not use words to communicate. At Project Art Works, consent is monitored from moment to moment, through a process of research and observation. Staf talk to support networks to fnd out as much as possible about the individuals they work with. They stay present, in the moment, with each person, monitoring assent and/or dissent through body language and other non-verbal cues. “This isn’t always obvious,” they note in a document they shared with me titled ‘consent’, “which is why it is so important to stay very present with the person you’re working with.” They always provide choice. If something feels unsuitable, they change it. But perhaps most importantly, “where possible we build long-term relationships with individuals and their circles of support. This gives us insight into the ways they most enjoy interacting, how this might shift according to environment, context etc. and how we can positively respond.” Paying attention and building relationships are at the heart of Project Art Works practice and provide the foundations for ethical collaborative work with people who might not be able to articulate their preferences. But neither

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of these things – attention, or relationships – is self-evident. They must be learned and negotiated, often over long periods of time. George and Sam

Sam and George Smith frst encountered Project Art Works as children. Now, adult men, they ran full pelt into the studio on a Thursday morning. Immediately, George started to paint. Well, frst he sat down in front of the three sheets of paper on the table in front of him. Two of his paintings in progress leaned on the wall behind him, three on paper were pinned up a bit higher, beside two big sheets drawn up into a grid. One was flled with daubs of colour and labelled with names. Rachel explained that George mixes all his own colours and then records them on these charts, with names like grassy green, pinky orange, sea-sky blue, purple grey. Today he added fve daubs to the newly gridded sheet: bluegrey, browny red, light grass, purple, and grey brown. George held onto two paint brushes and almost fippantly gestured across the paper, across one after another of the sheets on the table in front of him. At one point I heard him say “magic”. He had just made a big stroke in his light grass. Then he said “massive attack”. Massive Attack was playing through the speakers. George likes music. We all had tea and biscuits at 11. The chocolate-coated digestive crumbled a little onto one of the sheets of paper. Rachel asked if they were fnished. George indicated that they were with his head. Or did he? With my untrained eye, I simply saw a lack of response. Rachel stuck the pictures up on the wall to dry. When Sharif became ‘heightened’ – speaking louder and louder, shouting at the sink – George also, and quite naturally, seemed to become heightened. He repeatedly asked his support worker, who had come into the room: “Why is it that the blowfy is there? Why is it that the grasshopper is there?” Over and over. Then he asked, “Why is it that I’m trying to stay alive all the time in the kitchen? Why is it that I’m trying to stay alive all the time? Why is it that I’m trying to stay alive?” George was restless, getting up and down. Rachel sat down beside George. “Why is it that I’m trying to stay alive?” he asked her, not looking at his painting. “Let’s talk about it at lunch,” she said. “How about some music? Shall we listen to Bowie?” “Yes,” he said. Bowie’s ‘Life on Mars’ came on over the speakers and everything, everyone, settled back into place. Meanwhile, George’s brother Sam sat on the other side of the room. He sat for long periods of time, often silent. Or he drummed his fngers along the table. Or he blew onto his fngers as he moved them one at a time. Sam had a big canvas in front of him. He sat and looked at it, or he didn’t.

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George Smith and Rachel Hines, Project Art Works studio, 2018.

Source: Photo courtesy the artists and Project Art Works

He propped his feet up on the canvas, which was tilted away from him at an angle, with shallow buckets beneath it to catch the drips. Sam sat for long periods of time and then every now and then he would spray the canvas and the paint would drip down from the very top to the very bottom. Every now and then one of the staf would go over and fll up a spray bottle for him or ask if he wanted a diferent colour. Last week, they had laid thirty colour cards out on the surgical table on wheels that was sitting next to his canvas, with his spray bottle on top. From the thirty he chose seven. Today he chose three from the seven to work with. “It’s important to give him the time to look and to choose,” Rachel said. By the window, a sheet of paper sat with a thick piece of charcoal resting on top of it. Every now and then Sam went over to make a mark. Hanging on a line out the window, past the courtyard covered in paint, past the fence, a few houses away, somebody else’s washing shivered. Blues and whites and blacks and an occasional orange. *** Earlier, I had watched a video by Project Art Works called Tesselate (2016). In it, Sam Smith makes a two-and-a-half-square-metre work on a timber and plywood construction. He helps cut and saw and sand the panels – twenty-seven squares to make up the work in its totality. He squeezes bottles of paint that

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FIGURE 9.12

Sam Smith, Untitled, 2020, ink/acrylic, 152cm × 122cm.

Source: Photo courtesy the artist and Project Art Works

empty across the big surface – red, black, blue, pink. The whole process has a percussive instrumentality to it. The artists supporting him listen deeply too. Sam drums and splats and squirts and circles and spots, each panel separately, then the panels recombined. A  train goes past. Sam taps his fngers on the wood. A red bubble moves slowly across the screen on a fow of paint. ***

Project Art Works: Illuminating the Wilderness

FIGURE 9.13

Sam Smith, Project Art Works studio, 2019.

Source: Photo courtesy the artist and Project Art Works

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FIGURE 9.14

Project Art Works, Illuminating the Wilderness, 2019, flm still.

Source: Photo courtesy of Project Art Works

In Scotland, in Illuminating the Wilderness, the camera follows Sam and George as they run and run and run through the free wild landscape, down paths and out onto open felds. Someone told me that at one point they were worried that Sam would just keep running and running away and they would never be able to stop him or catch up. *** Meanwhile, Sam and George continued to paint, or not paint. Meanwhile, the staf were dancing to Bowie, or mixing up colours, or dripping drops of ink onto canvases, or unsticking tape, or taping up straws. The staf were dancing, but I was sitting still, watching, learning. A rocket

Deep in the Museum of Contemporary Art in Sydney, behind the double glass doors of the National Centre for Creative Learning, a man was drawing a rocket.1 The rocket was for going to space. He was drawing a rocket using a thick marker pen duct taped to the end of a long stick. The pen left a glossy trail. “Wow, I  love it. Look at that, I  love it,” said the man to no one in particular.

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Soon, someone would hand him another stick, this one with willow charcoal at its end. He would draw a series of vertical lines beside the rocket, lighter lines this time, but no less confdent. Then he would pass me the stick and leave the room. Soon, his rocket and his lines would be gone too. Or they would be there but hidden beneath the lines of other people who might not have been drawing anything at all in particular. Sharif: III

Sharif Persaud’s frst solo exhibition Have You Ever Had was frst exhibited in 2021 at Autograph, a public gallery in London. It included large-scale paintings, drawings, and flm. Many of these were self-portraits or told a story from his life – his dreams and nightmares, his favourite places. In one way or another his body was at their centre. They were the product of long hours of work in the studio in Hastings, often in the company of Tim, Rachel, and other artists. It was a labour that kept his anxiety at bay, grounding him in the steady process of applying paint to canvas: tracing the edges of his nose, hands, eyes. “Have you had any dreams lately? Have you had any nightmares?” In her response to the show on the Autograph website, the autistic artist and writer Sonia Boue (2021) argued that “an artist’s individual agency is a point often missed when their work is supported. Indeed, removing the lens of ‘supported work’ is vital if we are to dismantle a cultural hegemony which still allows intellectual ableism.” In its place, she celebrated Sharif’s work for its beauty, its relevance, and his accomplishment. She insisted on the value of his art, comparing it to Picasso, Matisse, Warhol. I could hear her responding to an art world that is still wary of artists practicing ‘outside’ the conventional paradigms. And of course, I agree. His paintings are powerful. They speak in a language of colour and line that compels you to listen diferently. This is what good art does, regardless of the maker. But here I want to take this argument in a different direction. I want to celebrate the conversations and relationships unique to the collective environment at Project Art Works as a valid, and integral, part of the art that Sharif makes. For example, the strong narrative focus of much of Sharif’s work tends to come out of the conversations between him and the artist he is working with in the studio. Sometimes this is obvious – Sharif uses speech bubbles, and characters converse about a particular moment in his life within a drawing. Other times it is less so, but often the spark or catalyst for a painting is in these conversations. Perhaps we do not need to remove the lens of supported work to dismantle cultural hegemonies, but rather to pay more attention to interdependence in all its many forms.

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FIGURE 9.15

Sharif Persaud, Self Portrait, 2015, acrylic on paper, 1.8m × 1.2m.

Source: Photo courtesy the artist and Project Art Works

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In his short review of Illuminating the Wilderness, when it was a joint winner of the Jarman award in 2020, the critic Adrian Searle (25 November 2020) wrote a dismissive and perplexed account of the flm and the people in it: Autistic artist Sharif Persaud insists on wearing a homemade Al Murray mask, and gets his wellies mired in the mud. Subtitles announce that someone is ‘happy blowing’ or ‘rocking’. The upbeat voices of carers cut through indecipherable chatter. “It is very boring here,” Sharif says in the gloaming, truth speaking to power. I fnd all this problematic. What did Searle fnd problematic? The indecipherable chatter? The unclear power dynamics? The boredom? The mask? All of it. So, after a few quick lines, he turned away. Certainly, it is not easy making sense of the people and practices at Project Art Works. Not because they are problematic, but because our society tends to expect easy narratives – for instance, of creative genius or tragedy, overcoming or sufering. But what if we allowed Sharif to teach us a thing or two? And Tim for that matter? What if we spent a while in their wild and precious lives, noticing the places where they have crossed? The weather and the wellies, the chatter and the trees, are rather interesting after all.

FIGURE 9.16

Sharif Persaud, Did You Hear?, 2017, acrylic, paint pen, and felt pen on paper, 1.5m × 2.9m.

Source: Photo courtesy the artist and Project Art Works

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Note 1 An earlier version of this section was published as part of an article I wrote for Running Dog (Watfern, 2019). Reproduced here with permission.

References Benjamin, W. (1935/1969). The work of art in the age of its mechanical reproducibility. In H. Arendt (Ed.), Illuminations. New York: Schocken Books. Boue, S. (2021). Dismantling intellectual ableism in the arts. Retrieved from https:// autograph.org.uk/blog/dismantling-intellectual-ableism-in-the-arts/ Persaud, S. (2017). The mask. UK: Project Art Works. Available online: https://vimeo. com/363066328 Project Art Works (2016). Tesselate. UK: Project Art Works. Available online: https:// vimeo.com/429242765 Project Art Works (2019). Illuminating the Wilderness. UK: Project Art Works. Available online: https://vimeo.com/326795036 Searle, A. (2020, November 25). Apocalyptic goo and Detroit in beats: Jarman award 2020 is shared. The Guardian. Retrieved from www.theguardian.com/artanddesign/2020/ nov/24/jarman-award-2020-shared-whitechapel-gallery-london Sedgewick, F., Hull, L., & Ellis, H. (2021). Autism and masking: How and why people do it, and the impact it can have. London: Jessica Kingsley Publishers. Thompson, E. (2007). Mind in life: Biology, phenomenology, and the sciences of mind. Cambridge: Cambridge University Press. Watfern, C. (2019). Illuminating the Wilderness. Running Dog. Retrieved from https://rundog.art/illuminating-the-wilderness-project-art-works/

10 THOM’S WAY WITH CROWNS AND TRAINS

Budgie keynote

During one of my early visits to Studio A, Kylie Madonna encouraged Thom Roberts to show me some paintings. There was a stack of canvases on the grey carpeted foor. We took them one by one, a corner each, and placed them out in a wonky grid. They were mostly paintings of trains. “This is Freddy,” Thom said. “This is Benji, Cam, Matt, Freddy.” Each train was also a person. “And what’s this one?” I asked, pointing to a picture like a keyhole or a peg or the outline of a human head and neck – a bulbous top and a thin bottom, concentric layers of luscious colour. “Lemon train. Budgie keynote.” “OK, budgie keynote,” I said, “can you tell me more about what a budgie keynote is?” Thom laughed. “It’s the hammer inside the piano.” “And it’s on a train?” “Yes . . . That’s the Oscar train. Do you like it?” Indeed, I did. I noticed that there were letters and numbers on the budgie keynote pictures. I asked Thom about them. “Well,” Thom said, “these are the high notes, this is the little bass, this is the big bass. This is the Tangarra walkway. This is an ordinary Tangy, it has these walkways. This is a Gosford Tangy, this has a walkway like this.” Thom continued to talk me through the diferent walkways of the diferent types of trains, and he walked through the paintings as he did this. Thom walked carefully around the blank bits at the edges of the canvases. One foot DOI: 10.4324/9781003466703-10

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FIGURE 10.1

Thom Roberts, Abudgiekeuote, 2020, oil pastel, 21cm × 15cm.

Source: Photo courtesy the artist and Studio A

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in front of the other. He said the names of trains and people, people as trains, trains as people, as though letting me in on a secret – loud and soft at the same time, his hands cupping his mouth, “You open up the doors and then go through like this,” Thom acted out the movement of the doors with his arms and hands. “I’ll tell you what sounds the doors make. The Tangarra train sounds like this: do do do dooo, pat pat pat pat pat pat . . . Doors closing, please stand clear. Beep beep woooosh.” Thom walked back and forth along and around the edges of his paintings, acting out the sounds and movements of the trains. We wondered, Kylie Madonna and I, if maybe the budgie keynote represents a sound. Or if maybe the budgie keynote represents a movement. Or if maybe the budgie keynote is a shape somewhere on the train. “Do you like it?” Thom asked me again. *** Later, Kylie Madonna the jaguar bush kangaroo told me that Thom Roberts has changed her experience of trains. Other things too, of course. But trains were most pressing in her mind as we spoke. Now, she told me, she notices diferent shapes and sounds, and she thinks of each Thom name for the stations as she passes through – Cloud Heaven, Christmas, Easter, St Herbies, St Monsters. One day, she looked through the doors as her train moved around a bend, and she fnally saw a budgie keynote. And then, just like that, it was gone. A mind in everything?

Unlike the diference between plants and animals, Farah and Heberlein (2007) argue that the diference between person and non-person may not be a natural distinction (that is one that exists in reality). Although personhood is central to ethics, and much of the law, the defning criteria of personhood are elusive. Our intuition of personhood, a function, in part, of a cortical Person Perception Network, may in fact be a kind of ‘illusion’: “like visual illusions, it is the result of brain mechanisms that represent the world nonveridically under certain circumstances” (p. 45). For example, we tend to attribute personhood to things that have a mouth and eyes, or that make particular kinds of movements. For most neurotypicals, this network operates according to varying degrees of salience: like me, not like me. Autistic people tend to personify or anthropomorphize objects more than their neurotypical counterparts. White and Remington (2019) propose possible reasons for this: a way of reducing uncertainty or promoting social connection? Writer and scholar of literature Ralph Savarese (2014) suggests that autistic people have a less human-centred empathy. In other words, many experience a deeply felt relation to all things in relation, or to what we might call

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the sentient intelligence of more-than-human worlds. For example, famous autists like Temple Grandin and Dawn Prince have written evocatively about their own afnities with animals.1 This ability to connect with the more-thanhuman is one of the things that equips many autists with an innate gift for a kind of lyric writing, one that employs metaphor, metonymy, simile, and synaesthesia – a way of eliding the more abstract concepts and categories that are the fodder of neurotypical verbosity by grounding language in the tangible and concrete (Savarese, 2015). It seems, writes Savarese (2014), “when addressing neurotypicals, autistics have no other way of expressing the mute, though completely vital, signifcance of what exists around them” (p. 79). Perhaps there is a mind in everything, it’s just that the neurotypical mind has grown accustomed to inferring it from faces. What if we felt it in all the forms that the world throws at us? Emotions

Thom likes to draw the diferent emotions on whatever surface comes to hand – on the backs of photocopies of faces, on trains, on folded up pieces of photocopier paper. Often, he will scrunch them or tape them up after he has drawn them. Thinking about Thom’s interest in emotions, I began to write about autism and social interaction and how it can be difcult for autistic people to attribute emotional states based on facial expressions. I  began to construct an argument about how Thom’s art-making might be a way for him to process emotions, or express them, or explore his experience of autism. But that’s not something Thom would say about his work. So, I stopped myself. Then I opened some of Thom’s pictures on my browser and tried to notice how they made me feel. Angry? Sad? Happy? Surprised? I didn’t feel anything very strongly at all. I had a sore back from sitting down all day in front of a screen. I was a little bit grumpy. My eyes were tired. I scrolled past a policeman and an elephant, lingered over portraits of Ringo Starr and George Harrison. I had a good long look at an Alien from Space with eight eyes, all diferent colours, a black gaping mouth, and curly green hair. I stopped at a print of thirty-six millennium trains, all the emotional states there on a grid. It made me wag, as Thom would say. Somehow, perhaps, I felt lighter. But here I am again making claims for art, for an art that is felt. Crowns

There is one particular thing about meeting Thom Roberts that has changed my experience of the world: I can’t stop looking at crowns – that area at the upper back of the head where hair tends to grow, if you have any, in a circular pattern known as a whorl.2 On the train, I move to the back of the carriage so that I can stare down the rows of seats at the curves and waves and

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FIGURE 10.2

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Thom Roberts, 36 Millennium Trains, 2019, posca on solvent release print, 76m × 58m.

Source: Photo courtesy the artist and Studio A

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spirals and ever-expanding patches that constitute the heads of strangers from behind. Sometimes, I wonder what they contain – those hair and skin and skull encased brains . . . I like crowns heaps I like crowns most I like tiny holes Millions of holes Millions of holes in your head There are tiny squares . . . With my magic eye. Thom Roberts (2009) When I frst met Thom Roberts at Studio A, we didn’t shake hands, but he did on multiple occasions hold his palm across my crown and run his fngers through my hair, at other times using his thumbs to search through my whorl, where at one point he found a millipede. “Thom is always reading brains,” Catherine McGuinness, another Studio A artist, whispered to me conspiratorially. “What is it? What is it? What made these holes in your head? What is it? What is it? Who made these holes?” Thom whispered too – to himself, to me? I found this a little confronting – here was someone I had just met touching me in a way I wasn’t used to. But it was also soothing. I love my head being stroked. I fnd it incredibly relaxing and comforting. I think it was his way of taking my measure, of sussing me out. I know now that Thom’s crown readings are a common part of his dayto-day interactions in the studio. Thom delights in fnding diferent creatures in peoples’ hair, or simply making a momentary connection as he rushes past on his way to important matters at an easel or a trestle table. Woody (a.k.a. Emma Johnston) describes it as a “beautiful blessing”. It is a favour that she will return to him, a way of checking in, particularly if she notices him feeling edgy or out of sorts over the course of the day in the studio. No one can remember when exactly Thom’s fascination with crowns began. It may have all started with a kaleidoscope. In a photograph from 2008 we look with Thom down his magic eye at hair fragmented into patterns, into millions of holes. Thom no longer has the kaleidoscope, but he still very much likes crowns. *** Since I’ve known him, Thom has found quite a few diferent things in my crown, including but not limited to holes, a millipede, a car, a horse’s body, a cow’s body, a cockroach, a spider. Since I’ve known him, I’ve seen Thom ‘read’ crowns in quite a few diferent places, including but not limited to the studio, a pub, a children’s festival, an

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FIGURE 10.3

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Thom Roberts, Crown Through the Magic Eye 1, 2008, digital photograph.3

Source: Photo courtesy the artist and Studio A

art gallery. Sometimes this act has been feeting, a simple hand to head. Other times, it has been more protracted. Depending on the context, it could be an ‘experience’ for the public to engage in. It could be an ‘artist talk’. It could be ‘performance art’. “I like to turn everybody’s crowns, even strangers, all into animal bodies,” he told me. *** The frst time Thom read crowns as performance art was at the Kandos Cuts, Colours N Curls hairdressing salon during Cementa 2017, a contemporary arts festival in a rural town a few hours’ drive out of Sydney. On the shopfront window, a large-scale drawing of Thom’s own crown was digitally animated with a choreographed dance of millipedes. The whole space was covered with his marks. And then, people sat down in an ancient barber’s chair in the window as Thom proceeded to touch, then trace, then turn their heads into drawings of animals. ‘Crown portraits’, Thom calls them. The frst time Thom read my crown as performance art it went like this: he touched my hair for a few moments, running his fngers back and forth along the parting at the back of my head. Next, on a sheet of tracing paper, he made a series of lines with a posca pen, literally tracing my hair. Then, he clipped the paper to an easel, and turned me into a four-legged spider.

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FIGURE 10.4

Thom Roberts, Positive and Negative of Thom Roberts, 2017, installation view, Kandos Cuts, Colours n Curls during Cementa Festival.

Source: Photo courtesy the artist and Studio A

But I’m getting ahead of myself. Andrew

In the echoing chamber of the arts centre, Carriageworks, there were banging, mufed footsteps all around us. I detected a sense of hesitation in Andrew’s (a.k.a. Daniel Mudie Cunningham’s) voice. Was I imagining it? Was he choosing his words carefully? I also detected the deep admiration that this curator had for Studio A, and for Thom Roberts in particular. Thom Roberts, who gave Daniel the name ‘Andrew’, which he wasn’t so sure about. Thom Roberts, whom he had just curated into an exhibition called The National 2019: New Australian Art. Thom Roberts, who calls Carriageworks a bedroom for trains. Thom Roberts, whose portraits of people as trains and trains as people Andrew had curated onto the Wilson St  signage that greets everyone who enters the venue from the road near the university and Redfern train station. Thom Roberts, who will often go train watching near Redfern station, where there are eight lanes of trains going in diferent directions, and you can get up close to the tracks. Andrew admitted that his admiration for Thom was a “slow reveal”. It took getting to know him and forming a relationship, but also getting to know how he worked. “In some ways,” he continued, “I can never really understand how

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he grasps the world, but I feel like I can interpret his perception . . . I don’t know, it’s hard to . . .” He cut himself short, changed tack. “I’m really interested in the way that he’s interested in trains.” Blowing Thom Roberts’ paintings up big on the signage at Wilson St made sense, Andrew told me, because to him the panels looked like train windows. He imagined being a passenger on a train, looking out those windows, seeing the landscape fragment into images that fash past as the speed of the train accelerates. He started to think about how Thom loves sequences of images, and photocopying, and, of course, trains. He began to make connections. He remembered Walter Benjamin – his writing about the role of the train in modernity, and as a way of thinking about cinematic montage. He knew that Thom makes animations and uses montage in his work. So, he blew Thom Roberts’ paintings up big on the signage that looks like train windows above the former railway yard. *** Writing about Thom Roberts’ work for The National, Carrie Miller (2019) opens with her thoughts on the train as “perhaps the quintessential cultural signifer of capitalist modernity”. It’s a technology equated, she continues, with modernist ideals of human progress: being a passenger on trains has shaped how we view the world. Looking out through a framed, moving image is a cinematic way of seeing. She suggests that, perhaps, the way Thom photocopies,

FIGURE 10.5

Thom Roberts, Thom Roberts Counts Trains, 2019, installation views, eighteen resin-coated polyester fabric banners.

Source: Photo courtesy the artist and Studio A

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FIGURE 10.5

(Continued).

and then produces multiple images that form a sequence, can be linked to montage and movement in flm. Then, she hedges: But while it is possible to make these larger claims about Roberts’ practice, it’s undeniable that the work is, frst and foremost, an extension of his deep and abiding personal connection to this specifc form of technology: I liked trains since I  was a little child, reddies and silveries back in those days; 1984 it was. I  was counting them. I  was counting the trains. I still count them. I see one – one going that way, one going the other way. It’s just something that I like to do. Language about art can be so stifing, so difcult to get right. There are formulas that people fall back upon, the kind you will often fnd on wall labels in galleries. For example, we might be tempted to write: “Thom Roberts explores the concept of trains in his work.” We could go even further, to add, “He uses sequencing and blurring efects in his photocopying practice to evoke the relationship between cinematic montage and the experience of being on a train.” But the language there is wrong. Firstly, it wouldn’t make sense to Thom. Secondly, it doesn’t help make sense of Thom’s intentions for others.4 There’s nothing wrong with a curator or critic, or anyone really, thinking about the

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train as a cinematic metaphor in Thom’s work. People can think what they like about art; that’s part of its special appeal. But there is something wrong with thinking that Thom engaged with the idea of trains in an abstract, conceptual sense. Thom does think with trains, and the way he makes with them and about them is an example of his creative intelligence at work. But he is not exploring the idea of trains; he is exploring the feeling of particular trains – their sounds, their shapes, their colours, the way they move. He is making his joy – his love of trains – visible to others. Perhaps he is teaching us about the animacy of inanimate things. Certainly, he has shown me how train faces and human faces have many similarities. He has

FIGURE 10.6

Thom Roberts, Kenny Matthews Father, 2017, acrylic on canvas, 93cm × 77cm.

Source: Photo courtesy the artist and Studio A

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FIGURE 10.7

Thom Roberts, Millennium Train, 2017, acrylic and posca pen on canvas, 113.5cm × 81.5cm.

Source: Photo courtesy the artist and Studio A

shown me how to be with trains, and people, diferently. He has shown me how to pay attention to things I might not have otherwise. In fact, when I come to think of it, this is what most artworks that have ever really moved me have been able to achieve: they have helped me to pay attention diferently. With my embodied brain. With that intricate, animate machine made from fesh. When Andrew spoke about his ideas with Thom, he told him, those signs look like train windows to me. It would be nice to see your images in the train

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windows. And, if you were sitting next to the window, in the window seat, the train would frame your body and your torso. Whenever Andrew spoke about his show to other people, he would always start with Thom, because he was a kind of entry into the show, and the work would literally be at the entry to the show. “I didn’t treat Thom’s work particularly diferently to anyone else’s,” he told me. “But it did make me think that framing Thom, or contextualizing who he is and who Studio A are . . . I wrestled with that a little bit. Because I thought, is it important to say this is an artist with an intellectual disability?” That Thom is autistic or has a disability is not something Andrew had ever discussed with Thom or the Studio A team, because it did not seem very relevant to Thom’s work. For some artists their disability might be an intrinsic part of their practice. Andrew himself grappled with these questions in the 1990s, working out whether or not to describe himself as a queer artist – whether or not to use “identity as a description of the cultural production”. He decided in the end that it was important to provide audiences with the context that Thom works at Studio A, “an organization that creates career pathways for artists with intellectual disability”; an organization that creates opportunities for them as contemporary artists, in the contemporary art world, he added. He certainly didn’t want to frame Thom as an Outsider Artist and didn’t want to dwell on any kind of pathological, or non-normative description of him or his work. He wanted to celebrate him as a contemporary artist, no caveats. Andrew curated Thom into his show because he found a way to think with his work and because he thought about a good place to put it. It’s the same with other artists. It doesn’t matter who. But with Thom, he thought trains and frames and cinema and movement. He also just likes the guy. He likes how Thom takes over a room and how he touches his crown and he kind of likes the name he’s been given but wishes it could have been something a bit better. And that’s how art works in the art world. One person likes another, likes the way that they work, fnds a way to think with them. But only because they have had the chance to get to know them. “There’s something that’s so beautiful and quite delightful about the way Thom interacts with people, and the way he is in the world,” Andrew told me. “I quite love it actually. I think he just makes me happy,” he laughed. “I don’t want to overthink it in some ways because it’s just . . . he’s just a great guy.” *** Thom was happy to have his pictures in the show at Carriageworks. He will be happy to keep making pictures and doing more things with them. This is what he said once, to Kylie Madonna: I want to make my pictures at Carriageworks move. I  want to play with the size of the portraits, make some large and make some shrink down tiny small. I  want to tell children stories about going around the City Circle

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and North Shore line. I want to make the children and adults laugh. Funny trains that are light and dark. I want to shrink up big my friend Kenny Conehead’s (Mathew Calandra’s) big head and put him on the City Circle line. I want him running on the tracks going from St Herbies station (St James station) to St Monsters (Museum) and back to Shanghai station (Central). I want thousands of people to see my pictures move and I want to make little children laugh. At the moment people are confused by how I  see trains. I  want to help them understand. I  feel excited on the train and I want other people to feel excited. Wonderful.5 Thom’s paintings, which were blown up big on the signage at the Wilson St entrance to Carriageworks, are joyful, playful, even accessible. They communicate directly. You don’t have to understand anything beyond what they are – portraits of people and trains – to engage with them. You don’t even have to understand Thom’s relationship with the people and trains he has depicted. You don’t need to know that one of them is Katy Plummer, Skye-Fox’s pixie assistant, whom Thom calls Diesel Snow White. Or that another is Angelmouse’s husband. Or that another is Upsy Daisy, Thom’s frst supporter at Studio Artes. Or that another, the boy with the sad face and the three eyes and the black and white stripey top, is now hanging in a psychiatrist’s rooms somewhere in north Sydney. Or that another is Kenny Conehead Matthews, otherwise known as a Tangara Train, otherwise known as Matthew Calandra, who also makes art at Studio A. *** In a short documentary about him, Thom Roberts visits The National and looks up at the pictures that have been blown up big at the entry to the bedroom for trains (Quinn, 2019). “Holy moly,” Thom says, “they’re huge! Holy Moly . . . Look at the size of these pictures! They blow ‘em up huge, like magic.” Cut to Kylie Madonna, who explains, “the aesthetic language Thom has developed is so compelling that audiences will be inspired, hopefully, to investigate further – what is this world that Thom exists in?” Cut to Thom. “Ten hundred thousand people will come and see Thom Roberts’ artwork,” he laughs. “There you go.” Kenny Matthews

Thom seemed distracted. He was fussing. He was looking through boxes, walking back and forth between the corridor and his desk, rocking back and forth on his heels, running his hands back and forth over his head, opening and closing the cupboard looking for paint. But his painting of Kenny Matthews sat still and silent and centred on an easel near the plan drawers. I wrote in my notes from that day: “The portrait is

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FIGURE 10.8

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Thom Roberts, Kenny Matthews Tangara, 2018, acrylic on canvas, 116.5cm × 71.5cm.

Source: Photo courtesy the artist and Studio A

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very accurate – is that the right word? It captures something about Matthew – a look, a presence?” I watched as Thom played with Kenny Matthew’s nephew. I watched Kenny Matthews leave the studio with his mum and brother and his brother’s son. “Bye, Thom.” Then I watched Woody bring Thom back to focus on his work. She held up a picture of Kenny on her laptop beside the canvas, while Thom drew in the expressive lines on his face – creased forehead, crinkles at the edge of a smile. “Yep . . . yep . . . yep . . . yep,” Thom said, every time he made a mark. Then he decided he needed to see it from a distance. He walked back to the other side of the room and squinted, again rocking back on his heels. “Do you like it?” He asked me. Crowns again

The frst time I watched Thom perform his crown reading was at a corporate function at a pub near Cloud Heaven (a.k.a. Circular Quay, in central Sydney). From my shady couch by the bar, or lingering near Thom’s easel and chair, I tried to map the ripples of communication or connection that might have occurred between Thom and his somewhat boozy audience. In this strange setting, with people largely unversed in performance art, there was a degree of awkwardness and even misunderstanding. I  saw clumsy touches, averted eyes. One woman was brought to tears by the drawing Thom made from her crown – a herd of black horses. She told me about her family difculties, her son’s deep depression. For her, the crown reading was like a palm reading or meeting with a psychic. Since then, I’ve watched many crown readings and spoken to the people who’ve experienced them, in all kinds of contexts.6 And some people do seem to think that Thom is really seeing them through his performance, that he is somehow peering into their minds through the back of their heads. Is this the trope of the autist as savant playing itself out (Arnold, 2013)? Dare I say it, does Thom’s crown reading begin to err into the realm of the “freak show” (Hadley, 2014)? “Step right up, step right up, have your crown read by Thom Roberts, autistic genius.” Certainly, participants like to ponder the signifcance of their animal. A bear: nickname since high school. A bee: feeling like a worker drone. An ibis: “well, I do like to eat a lot of junk food.” But most people laugh, with Thom, when they see his interpretation of them, one that they realize has been driven by the abstraction of a few lines traced from the hair on the back of their head, and not by some mystical vision. A young man summed it up well: “I felt that it was just an exploration that could have gone anywhere, and I was going on this journey with him.” Something else that happens in Thom’s crown-reading performances is that people feel cared for, or perhaps attended to. People with intellectual disability

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are often cast in the cared for role, as the recipients of care (Rapley, 2004). So, a gymnastics coach explained to me that in the past she has only really had interactions with people with intellectual disability or autism when she was providing them services, “but it was diferent this time because I was, for want of a better term, in the passenger seat”. Here, Thom was providing a service to her. But what is the ‘service’? Well, I  know I  feel cared for as Thom drums his fngers along the parting that runs from my double cowlick almost all the way back to the tight little bun I always have at the nape of my neck. It is something about the intimacy of touch, then the sound of posca pen on paper, the way the paper curls over your eyes so you can’t see out, if only for a second at most. “It feels a lot like you’re about to get something done to your body,” one woman told me. “As women,” she continued, “we opt into those experiences, like going to the hairdresser, going to the nail salon, going to get our nethers plucked. But this was really nice to have someone just gently touching my head.” Yet it goes beyond touch, and it’s not exactly a service either. It doesn’t feel transactional, although there is an exchange of sorts. For one, the participant is gifted their crown portrait at the end of the ‘reading’. As the giver of the gift, as the artist, Thom exerts his own unique power within the social dynamic of this performance. And if the supplicant is lucky, they receive more than a drawing of a bear, a bee, or an ibis; more than the physical tracing on paper: rolled up, sticky-taped, and handed to them to do with as they will. They receive a moment of insight into Thom’s creative process: his delight, his disinhibition, his talent. “When I see Thom doing this,” a participant confded in me, “I recognize there’s a sense of him having assurance about who he is and what he is through the doing. And that reafrms to me the importance of creativity in each of us.” Witnessing Thom’s creativity can be both liberating and inspiring. Another artist, crown freshly read and recovered from a big chesty laugh, sighed heavily: “Now I can’t wait to go home and face my blank canvas, so to speak”. For participants and onlookers, seeing Thom work is a demonstration of his focus, his skill, his way of working: “It’s just the joy of making,” said one woman after her crown was read in a university art gallery, “There’s dedication. But also this sense of abandonment. You can see he’s lost in doing the thing, and there’s the focus but when he’s fnished it’s on to the next.” *** I recorded those interviews with Thom’s audiences, like I recorded the interviews with Skye’s audiences, like I  recorded the interviews with Project Art Works’ audiences, because I  wanted to understand how their work afected and connected people. I was searching for evidence of something: an interaction, an encounter, a moment of understanding. I  was seeking to trace aesthetic and empathic processes as they played out across the whole social feld (Bennett, 2012): what does this art do? How is it received? I could conclude that Thom’s crown-reading performance is an opportunity for creative

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FIGURE 10.9

Thom Roberts, A family of black bears (Chloe’s crown reading), 2019, posca pen on tracing paper, 42cm × 29.7cm.

Source: Photo courtesy the artist and Studio A

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and social transformation on the part of his audiences, which leads to social role valorization for Thom, who is shown to be a skilled, professional artist with important insights to share. But I am reluctant to make such categorical claims. I fear their violence. Art makes nothing happen in a way that makes something happen. Reading back over the interview transcripts, over and over and over again, I was drawn to particular images and events rather than the abstracted ideas that they might be pointing towards. In other words, I wanted to dwell in the lyric qualities of the encounters I experienced because that was the best way I could fnd to make sense of them. For example, a woman, let’s call her Violet, was turned by Thom into an echidna surrounded by ants. She asked me, as he ran his fngers along the part in her hair, “Is he psychic?” I’m not sure what I said in response. I do know that afterwards, she told me she used to work in a call centre with a lady who thought people were vegetables. “I was a rhubarb, she was a brussel sprout.” There was another woman whom Violet always thought of as an Afghan dog – because she had the hair, you know? “When she left, she gave me her ruler,” Violet remembered. Before she left, Violet asked me, “How do you think Thom interprets it? What do you think he thinks it means?” *** Another example: a group arrived from a local disability organization. A woman in the group was carrying a baby doll with three coloured marks on her forehead, in what looked like posca pen. She reached out to me, multiple times, touching my wrist, gently but with determination. A support worker pulled her away each time. She did not have her crown read by Thom. I interviewed the group leader, whom Thom turned into a frog with lots of little frog eggs. “It’s the anticipation I love,” he said. “Like I love, love, love going on holiday to somewhere I’ve never been before. It’s the unknown. Packing my bags, but not knowing what exactly I might need.” “What I love,” I said, “is arriving somewhere in the dark and then only seeing it for the frst time in the morning when I wake up.” ***

FIGURE 10.10

Thom Roberts, Millipede (detail from Chloe’s crown reading), 2019, posca pen on tracing paper, 42cm × 29.7cm.

Source: Photo courtesy the artist and Studio A

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FIGURE 10.11

Hands on Thom Roberts’ crown, 2018.

Source: Photo: Chloe Watfern

I’d like to not make explicit the metaphors I am reaching for, but I suppose I must. No, I’ll take us in a diferent direction. I’ll ask: What is the metaphorical potential of this act – of reaching out to another person, whether friend or stranger, and making contact, hand to head? How many heads and how many hands make the web of our belonging? And what about the webbed feet? The hoofs and paws? The penned papers of our mysterious consciousness? The gifts I have given and the gifts I have received

• Four pieces of caramel milk chocolate, each Monday I was at the studio, after Thom had eaten his lunch. Once, he placed the chocolate onto my computer, just next to the track pad. I  left it for a little too long and it started to melt. • Drawings made during the reading of my crown – a millipede, a turtle, and a family of black bears. • At a second-hand book sale on the ground foor of the Crows Nest Community Centre, I found The Gift by Lewis Hyde (1983/2007). I also found a book on locomotives of America, which I gave to Thom. Only now do I piece those two facts together. Lewis Hyde writes, “the only essential is this: the gift must always move.” His italics not mine, but if they weren’t there, I would put them in. He continues, “There are other forms of property that stand still, that mark a boundary or

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resist momentum, but the gift keeps going” (p.  4). It’s weight, he writes, “shifts from body to body” (p. 11). The nascent idea or talent that allows for, and brings forth, creative labour is a kind of gift. And an essential element of that labour “is not creation so much as invocation. Part of the work cannot be made, it must be received” (p. 186). The work of art is a gift, which must move from body to body. Returning to a deep source, I  read again through Mauss (1906/1967), who mapped the obligation to give, the obligation to receive, and the obligation to make a return gift, or give onwards, that has been embedded within many social systems – the potlatch, and the taonga for example. He argued that these traditions are part of a “pattern of spiritual bonds between things which are to some extent parts of persons, and persons and groups that behave in some measure as if they were things” (p. 11). I give thanks for the gifts Thom has given me and hope to give them on. For this is the logic of the gift – when given right, it compels a kind of reciprocity that is not transactional. • There’s another gift from Thom that I forgot to mention and fnd hard to put into words. Perhaps I could call it a lightness of being. Light because each of us are not solid. We could be something else and perhaps we are – a train, a bus, a building, an ibis, a bear, a bee. A magic show

In his book of prose poems about the artist Joseph Cornell, Charles Simic (1992) writes, “all art is a magic operation, or, if you prefer, a prayer for a new image” (p. 30). Earlier in this poem, called ‘A force illegible’, Simic wonders, “Did Cornell know what he was doing? Yes, but mostly no. Does anyone fully? He knew what he liked to see and touch” (p. 30). *** Thom did a magic show. Everything backwards. He walked into the room backwards. He made all his movements look like he was in reverse. He ripped a sheet of white paper up and threw it into the air. The pieces fell slowly to the ground. He walked out of the room backwards. Then, he played the flm back, backwards. All the small pieces of paper came together in his hand. A clean white sheet. *** Walter Benjamin (1935/1969) writes of the origins of art in the creation of ceremonial objects for ritual. He writes of cult objects, whose audience were

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not other humans but the spirits or gods. These cult objects were, in his words, “an instrument of magic” (p. 7). With the growing secularization of art, he writes, Western society turned towards a kind of art for art’s sake – denying any function. It was a turn towards a secular cult of beauty. However, with the advent of mechanical reproduction, the criterion of authenticity upon which art for art’s sake is built, the ‘aura’ of art – remember, “the unique phenomenon of a distance, however close it may be” – was disrupted. In its place another practice – politics. And with that practice, we moved from holding a cult/ritual value for art objects towards an emphasis on their exhibition value – who will see them? How close will they be able to come into the world of a viewer? In what ways will people be touched? *** When Thom frst saw the animated train stations that we had created he called it magic. I agreed. We were at a group show, more like an installation, of work by some of the Studio A artists. The name of the show was home. The work was housed in a former torpedo factory opposite the ferry terminal at Neutral

FIGURE 10.12

Thom Roberts, City Circle Line, 2019, print with augmented reality animation. Installation view, Sub-Base Platypus, home, North Sydney.

Source: Photo: Karla Hansen. Photo courtesy the artist and Studio A

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Bay, on the northern side of Sydney harbour. On the water were sleek yachts with names like Allegro, Cantana, and Ambition. At the exhibition, I helped people use an augmented reality app on their phone so that they could see Thom Roberts and his trains move through the stations of the city circle line. Thom jumped and cartwheeled between trains as they careened down the criss-crossed lines he had drawn. He became a train driver. Train faces spiralled. Train faces moved back and forth, towards and away from vanishing points. I saw quite a few people laugh. *** When I joined the artists on a site visit many months before, Kylie Madonna asked everyone to come together at the centre of the warehouse and close their eyes. “Take a deep breath,” she said. “And think about the colours in here, the temperatures, the sounds. And tell me what the space is saying to you.” “Oh my Lord, this is making me sea-sick,” said Thom. Taking a diferent approach, she asked us, “when your audience walks in, what is the most important thing you want them to feel?” Skye knew, “Calm but a bit creepy”. Meanwhile, Thom made his way over to the remnants of railway tracks in the concrete foor and began power walking back and forth along them while hooting like a train. *** On the last day of the home exhibition, I  spoke to two women near Thom Roberts’ train stations. All the artists and their friends and family were milling around us. “It means so much more, meeting the people – the artists – themselves,” one of the women told me. The other continued, “It’s just so easy to see something on a wall or in a room and stop for a moment or two but not really know the story. You look, and then you walk on.” “Yes, but today,” the frst said, “I really felt the connection. Not only with the work, but with the artists. And I could see how they are all so connected too.” Kylie Madonna and I had masterminded a little letter box over by one of the walls where people were encouraged to write something – a poem, a phrase, a picture – on a postcard, in response to the show. Looking through the sixty-six cards we received, I found all kinds of small gems: tokens of thanks, love letters. The ones I liked best were made by fellow artists from Studio Artes and Studio A. I see them as evidence of their connection, and their support of one another. Then I found a response from eight-year-old Leo: experience crossed out twice and rewritten. And the folly of trying to capture experience on a postcard at a former torpedo factory when the trains actually weren’t there at all. ***

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FIGURE 10.13

Postcards Home, 2019.

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(Continued).

Even so, at the exhibition, I eavesdropped on all kinds of conversations, trying my hardest to get at experience, to fnd out what people thought and felt, or simply said. “How sophisticated.” “There’s so much work involved.” “How long did it take you to make?” “How did you do it?” “How clever.” Disability

I was on the lookout for ableism, and I was on the lookout for barriers. Have I been trying to show artists like Thom Roberts overcoming barriers? I hope not, because perhaps that in itself would be a form of ableism. I note that once, Thom was not asked to speak at an opening event, even though all the other artists in the show gave talks. The curator spoke on his behalf.

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FIGURE 10.14

Thom Roberts, Mirror Image of Faces, 2020, ink and acrylic on paper, 50cm × 70cm.

Source: Photo courtesy the artist and Studio A

I note that once, Thom drew portraits at an art fair. An artist approached and threw $100 at his feet. “You should be paying him,” the artist said to Kylie Madonna, who took it personally, of course. Because he wasn’t being paid to be there. And because she worries all the time about whether she is exploiting the artists in some way. But Thom did sell a lot of paintings at the fair, and part of those sales may have come out of the interactions that occurred during his performance. *** It felt awkward, talking about this with Thom – disability. So, we didn’t. I have been complicit. I have been ambiguous. I have been ableist. I have been an advocate. I have exotifed. I have focused on diference. I have celebrated diference. I have celebrated everything. I have become a friend. I have forgotten. I have been complicit. It’s not always easy. Why is it so awkward? Thom’s way

Often, when I asked Thom Roberts a question – for example, “can you tell me about why there are four eyes in this painting?” He would tell me simply, “I did it Thom’s way.”

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But I couldn’t stop myself from coming up with explanations. I wanted to see the world in Thom’s way, through Thom’s eyes, so I tried to un-focus mine and look at all of a head at once without turning it into the concept ‘face’ or ‘you’ or ‘person’. Then I focused in close on the texture of each line. Then I moved back and forth between the whole and the parts in quick succession until I felt a little bit dizzy and disoriented, so I took a break. Later, I  thought about psychological studies using eye-tracking technology showing that autistic people look at faces diferently to their neurotypical counterparts – an attention more difuse, less focused on the salient features that tend to give clear social cues, like a smile. Too often this diference is described as defcit. But I would very much like to experience a cup as a smile, or a person as a train, even though this might make life difcult sometimes. Then, I wondered if all the eyes are there in Thom’s pictures because trains have lots of windows, and for Thom human faces are like trains with lots of windows for eyes, and train faces are like humans with mouths that open to let sounds in and out? Finally, I settled back into ‘Thom’s way’. I let myself be comfortable with not knowing some things, like why there are four eyes in many of his paintings, or what exactly a budgie keynote monster is. I let myself afrm what I do know, and what I feel: Thom and his art have ofered something to me, and I have ofered something back in return. My ofering has been these words. I have written about Thom’s way in a way of my own: attending to the webs of connection that art makes possible and that make art possible. I followed his art where it led me: into studios and museums and hair salons and train stations and red brick homes. I looked at the millipede he had made from the hair at the back of my head and thought of it as a metaphor for something that is hard to put into words but absolutely vital if we are to reconcile our animal brains with the meshwork of our shared lives. Notes 1 For a discussion of this autobiographical literature in terms of more-than-human emotional geographies, see Davidson and Smith (2009). 2 This and following sections focused on Thom’s practice with crowns are an expanded version of a journal article I  published in Art/Research International (Watfern, 2021). 3 Excuse the crease; the original photograph can’t be located, so this one has been scanned from a book (Roberts, 2009). However, I do kind of like that the crease here looks like a hair parting. 4 I am indebted to Snoopy (a.k.a. Katrina Dunn-Jones), a curator, writer, and psychologist-in-training, who has worked at Studio A for many years, for frst bringing this issue of language, and the expectation that an artist is always ‘exploring a concept’, to my attention. 5 Quoted by Kylie Madonna in a nomination text she wrote for an award, which, in the end, he didn’t win. 6 For example, at the UNSW Galleries, during The Big Anxiety Festival in 2019, I interviewed twenty people about their experience of having their crowns read by

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Thom. We sat on black folding chairs at the entrance to Thom’s assigned space – an appointment room, with concrete foor, four chairs, a table on wheels, and lime green curtains that looked like they could be from a hospital ward or, as Kylie Madonna noted, like some Soviet interrogation room.

References Arnold, L. (2013). The social construction of the savant. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(2). Retrieved from www.larry-arnold.net/ Autonomy/index.php/autonomy/article/view/26 Benjamin, W. (1935/1969). The work of art in the age of its mechanical reproducibility. In H. Arendt (Ed.), Illuminations. New York: Schocken Books. Bennett, J. (2012). Practical aesthetics. Events, afect and art after 9/11. London: I.B. Tauris & Co. Davidson, J.,  & Smith, M. (2009). Autistic autobiographies and more-than-human emotional geographies. Environment and Planning D: Society and Space, 27(5), 898–916. doi:10.1068/d4308 Farah, M. J., & Heberlein, A. S. (2007). Personhood and neuroscience: Naturalizing or nihilating? American Journal of Bioethics, 7(1), 37–48. doi:10.1080/15265160 6010641990010-0277(91)90045-6 Hadley, B. (2014). Disability, public space performance and spectatorship: Unconscious performers. Basingstoke; Hampshire: Palgrave Macmillan. Hyde, L. (1983/2007). The gift: Creativity and the artist in the modern world. New York: Vintage Books. Mauss, M. (1906/1967). The gift: Forms and functions of exchange in archaic societies (I. Cunnison, Trans.). New York: W.W. Norton & Company. Miller, C. (2019). Thom Roberts Counts trains: Artist text. Retrieved from www. the-national.com.au/artists/thom-roberts/thom-roberts-counts-trains/ Quinn, G. (2019). Art bites: Studio A. Sydney: ABC. Rapley, M. (2004). The social construction of intellectual disability. New York: Cambridge University Press. Roberts, T. (2009). In his own words. In S. Boccalatte  & M. Jones (Eds.), Trunk: Volume one: Hair. Sydney: Boccalatte. Savarese, R. J. (2014). I  object: Autism, empathy, and the trope of personifcation. In M. M. Hammond  & S. J. Kim (Eds.), Rethinking empathy through literature (pp. 74–92). New York: Routledge. Savarese, R. J. (2015). What some autistics can teach us about poetry: A neurocosmopolitan approach. In L. Zunshine (Ed.), The Oxford handbook of cognitive literary studies. Oxford: Oxford University Press. Simic, C. (1992). Dime-store alchemy: The art of Joseph Cornell. New York: New York Review of Books. Watfern, C. (2021). Thom Roberts reads crowns: Musing on art and neurodiversity through the lens of one artist’s practice. Art/Research International: A Transdisciplinary Journal, 6(2), 505–521. White, R. C., & Remington, A. (2019). Object personifcation in autism: This paper will be very sad if you don’t read it. Autism, 23(4), 1042–1045. doi:10.1177/136236 1318793408

11 VERBS AND NOUNS AND THE WORK OF ART

In 2018, I set of to fnd out how art works in two organizations that support neurodiverse artists and makers. What does it mean to know ‘how art works’? I divined my research puzzle slowly, learning to pay attention, and to translate this attention into words that present my experience of the communities I came to know. I found out about how art is made, how it is received, and how it connects us despite (or in fact because of) very diferent ways of being in and experiencing the world. In this sense, art has been the subject of my inquiry, but I have also always been awake to the lived experience of people. I have built up a constellation of glimpses into the lives and work of makers like Thom Roberts and Skye Saxon, Kate Adams and Sharif Persaud – artists who have not received adequate critical or academic attention, and for whom the discourses of Outsider Art are inadequate. I have shown how each story stands alone but is also deeply intertwined with the others, like the woven strands of one of Damien Showyin’s scarves. Am I the hands guiding the strands under? Or the loom easing it into place? Either way, I have assembled something that is new. I have shown how art works in very particular lives and places. I’ve found that it is in the particular – this person, this painting, this place – that we can begin to understand more universal questions about art and disability and lives connected through practices of care and collaboration, through practices that resist and transform, through practices that manage to get something said about life that isn’t reducible to a single self. When art works, it takes on a life of its own. And perhaps the meaning of all this can’t be pinned down, like some discrete representation of an intentional mental state, but we can feel our way towards understanding.

DOI: 10.4324/9781003466703-11

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The lyric and I

I arrived at the creative form of this book as a way of doing justice to the individual and collective practices that I came to know, and of inviting others to form a relationship with them. My approach to research and its representation also has broader implications for all thinkers, writers, and makers who are interested in mapping the social dynamics of art, or, as Bennett (2012) put it, all those who study “aesthetic perception at work in a social feld” (p. 3).1 I synthesized insights from traditions of writing within and beyond academia as I  shaped the structure and mode of address of this text. From narrative inquiry, I took an idea of story that resists a simple arc. Instead, the researcher is committed to composing “a form of togetherness” that shows how we are always in the middle of our stories (Caine, Estefan, & Clandinin, 2013, p. 576). From a lively history of thought critiquing the texts of anthropology, I understood the ethnographic project to be something that is made. I found license to explore ways of making and saying that help us approach complex and uncertain social felds and “fashion some form of address that is adequate to their form” (Stewart, 2007, p. 4). From disability studies, I looked to traditions of life writing and (auto)biography with and by people with intellectual disability (Atkinson & Walmsley, 1999). I saw many of the images and stories being made in the studios I studied with as a contribution to this lineage. Then, reading the likes of Janet Malcolm, Joan Didion, and Maggie Nelson, I began to arrive at my own style: a kind of lyric essay. It involved creating a collage of experiences – of people and objects I met, of things I read – each grounded in their own real, but also speaking to each other through the spaces between. The meaning emerges in the resonances. Through this form I was able to show how I was moved by and moved in the worlds of the two organizations I  studied with. But, as my writing mentor Mark Tredinnick (2011) once wrote, “the ‘I’ is not what a lyric work is about. The ‘I’ is the string of the lyre” (p. 66). Throughout this book I  have quoted Susan Sontag, who called herself against interpretation: rather than asking of a work of art what it says or means, we should remember what it does. Return to the sensuous surface of art, she said. So, I  did. But I  couldn’t let go of the possibility of meaning: not of uncovering some hidden message behind or beyond the work of art, but of seeing meaning emerge through the process of making and in the stories of the thing made. This approach requires its own conscious schooling in a mode of paying attention to art, and to the lives of people who make it. I found that surfaces have depth, and that I had much to learn from the highly sensory, bottom-up processing, and the elemental or ecological empathy, of autistic experience. That many autists are uniquely gifted in the art of lyric writing was an idea I only found after settling on the lyric essay as the form for

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this book, but I realize that this was no coincidence. The lyric ofers a kind of attention that is attuned to the ecological – the relationships between people and objects and place. In turn, this book shows others how to look, listen, and feel into understanding. It illuminates a kind of paradox that art inhabits: if we are to reach towards universal or collective truths then we must never stray too far from the particular – this body in space; how it feels to be me. What does this art do?

Thom Roberts is an artist. That sentence contains two nouns, one article, and one verb: ‘is’, a state of being word. Earlier in this book I wrote that Thom has reminded me that we can be verbs and not nouns. I was thinking of all that art does when we treat it not as a static thing but as a state of being and a process of becoming, and that the same applies to people. I turned to the verb ‘to make’. Thom Roberts makes paintings and drawings and photocopies and performances with skilful know-how, often in the company of other artists. His art has been exhibited in galleries and all kinds of other places too. Through his art, Thom also makes money, and friends, and meaning for himself. He doesn’t have to pack airline headphones into plastic bags for an hourly wage less than the cost of a cup of cofee to take home and add to his bookshelf cityscapes. Becoming an artist was a huge transformation in the life of Thom Roberts, as it was for Lisa Scott and Skye Saxon and many of the other artists whom I met over the course of my research, only some of whom could make it onto these pages. What’s more, I’ve shown how their work has touched other people, myself included – challenging assumptions about art and disability and what it means to make. All of this is important. All of these things go into the work of art and the act of making, despite all the unmaking, like the continued stigma and discrimination faced by people with disability in contemporary society – the art world one small microcosm. Earlier in this book I argued that “we unmake when we forget the many ways of being and doing, instead focusing on what can and has been produced – the thing that is made rather than the act of making.” I privileged verbs over nouns. I was reacting against a drive towards outcomes and impact, a drive towards productivity, which I felt diminished something important about the process of putting down one line onto paper after another – or stitch into cloth, or paint onto canvas, or letter onto page – of letting the making lead us forwards, without any expectation of a result, without expecting that an artwork or the person making it will say something or become something other than what they are in the moment of creation. It’s not striving for anything, Tony Colley explained to me in the Project Art Works studio; in fact “the self vanishes”. But the artwork does remain: the record of an interaction, the product of long hours of focused labour, or marks made in distracted conversation. It remains unless it gets thrown away.

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Certainly, I have shown how people think together through making, as the materials of art mediate interactions: the light touch Annis felt from Claire as they moved paint brush together, hand resting lightly on hand; Skye and her pixie assistant Katy stufng calico to give body to The Oddysee; Thom and I  animating the city circle line. The process of making together requires us to pay attention with all our bodies: our hands, our eyes, our ears, our skin. It involves coming to know another diferently, and through this coming to know ourselves diferently too. It involves feeling our way into knowing. Careful attention

Project Art Works’ concept of ‘calm bafement’ involves a kind of feeling into a relationship with another person. If they communicate without words, ‘calm bafement’ requires carefully and calmly noticing one’s own response to the other person and fnding a way to relate through the nonverbal languages of art. I framed this in terms of Milton’s (2012) double empathy problem: we neurotypicals struggle to understand consciousnesses diferent to our own, like those of autistic people. To address the neurotypical empathy defcit requires laying down socially conditioned cognitive baggage, including our tendency to leap to labels or categories. Suspending certainty, giving over to being with someone without words, without the option of asking them how they feel, or what they want to do, can be an incredibly vulnerable thing to experience. Yet it is a vital part of the process of building more inclusive neurodiverse communities and societies.2 In immersing myself in the world of Kate Adams and her son Paul Colley – through their flms, and through my time spent in their company – I came to understand some of the stakes of ‘calm bafement’, or of not knowing but fnding out. Their story of mother and son showed me how to fnd an ethics of care in the spaces between bodies, in the gaps but also in the moments of reaching. When I frst read these words by Ann Hamilton (2009), I immediately sent them to Kate: Not knowing, waiting and fnding – though they may happen accidentally – aren’t accidents. They involve work and research. Not knowing isn’t ignorance. (Fear springs from ignorance). Not knowing is a permissive and rigorous willingness to trust, leave knowing in suspension, trusting in possibility without result, regarding as possible all manner of response. (pp. 68–69) Kate replied, “Goodness the synchronicity of thoughts and words. How interesting that humans are connected in this way.” But I worried then that I couldn’t email Paul, and that these words wouldn’t mean anything to him, which is something I  have worried about a lot in the writing of this thing.

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Because not knowing takes on a diferent kind of ethical charge when the person about whom you are writing quite literally does not know what you are doing. I relied on Kate, as Paul’s guardian and conduit, to mediate his consent. An ethics of care? Certainly, working with neurodivergent subjects and collaborators, many of whom fnd verbal communication difcult, I had to navigate a tension that I found mirrored in the experiences of facilitators and staf in the studios – how to carefully enter into someone else’s practice, how to support or understand, without knowing exactly what they intend? Is this a practice of care? Annis frmly rejected my intimations towards care in that Liverpool pub. I believe she was reacting against certain narratives of disability – the medical model in particular – that always place the disabled person as the recipient of care, in need of ‘fxing’ or ‘treatment’. Similarly, in these narratives, the supporting artist is considered a worthy helper. But if we understand care diferently, as something experienced in relationship, reciprocally, then I  think it is worth acknowledging as part of the work that art does in the studios.3 In this sense, I have considered how art gives form and meaning to (often invisible) labours of care, where disability, too, is experienced in relationship. This shift in focus requires paying careful attention to the ways that art can make our interdependence visible, but it starts with noticing this interdependence already at play in the reality of day-to-day lives. This is not to say that autonomy is not important. For example, the right to freedom and choice is something that disabled people have been fghting for over decades, in response to ever-present histories of paternalism and institutionalization. But it is helpful to understand autonomy as a function of interdependence. Art ofers one site for us to actively explore what this interdependence might look like, and how it might work, challenging neurotypicals to step into a radically diferent mode of engagement with the world, and other people within it. What has this art done?

Which brings me back to verbs and nouns. Because if we stop at the act of making, and ignore the things that are made, something is lost. Verbs and nouns must dance. Objects are signifcant, and so is what happens to and with them. I  have shown how I  have thought with others through making. But I have also shown how I have thought with the things that have already been made, like many of the art works included as images throughout this text. Take, for example, Lisa’s dress. It is one material embodiment of her life story, whose form holds meaning. The words stitched into its cloth hold meaning too. In thinking with Lisa’s dress and the body of work that sits around it – the journals, the paintings – I came to know her in a way that I wouldn’t have from a conversation. Her art gets something said about her life, and about complex,

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messy lives, that is worth paying attention to. In a similar way, once I asked Skye-Fox, “Why do you want to share your characters?” She didn’t hesitate, “It’s a way of expressing what you can’t just say in ordinary words.” Charles Simic (1992) wrote that “every art is about the longing of One for the Other.” Every art is trying to fnd a way to say something that ordinary words won’t quite allow for, to those who know how to listen. We are each inside the worlds we have built, our bodies framed by windows into secret rooms. The glimpses aforded by the artists I have come to know through this inquiry are testament to their skilful know-how, and to the enabling relationships within the studios. They are also a reminder that we share a world, and each of our particular preoccupations holds common threads. Work

Lloyd moved back home in 2019, to the house I share with his mother and brother, his niece and nephew. Our relationship changed. Often, he will take our dog for a walk, or cook us dinner. Sometimes, we make art together, or I order his groceries. He calls me regularly even though he lives downstairs. I help him, he helps me. One day, a woman visited from Lloyd’s job support company. She wanted to take a photo of him in a nice shirt sitting at a desk. The CEO of her company thought that if the government saw a photo of all the people that they support, the government would be more inclined to keep providing funding for their services. She roamed the house looking for an appropriate place to take the picture and alighted upon my desk near the south-facing window in my daughter’s bedroom – cot on one side, change table on the other, bookshelf a little further away. My computer was open on the desk. I was in the kitchen making lunch, so I agreed that they could use the desk for their picture. Lloyd sat there in my swivel chair, smiling. Collared shirt, combed hair. I’m not sure if the woman asked him to act like he was typing on my computer. I hope she didn’t. Often, I must explain to Lloyd that I can’t talk or walk or join him in one activity or another because I am working. I am sitting at my desk, hands running over the keyboard, pressing buttons with my mouse. Working to understand how art works. I am reminded of Scott Wright (a.k.a. Santa Claus), who once told me that he never wants to use the term ‘work’ to describe what he does with Studio A. But art does get put to work. We make artworks. We make art work. Even though the words could well be something diferent. Thom Roberts used to work at Bathroom Industries. Now, at Studio A, he is making. He is given the freedom and support to fourish in that pursuit.

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Thom Roberts is an artist, and a maker, and a friend, and autistic, and a huge fan of photocopiers and trains and crowns (and buildings and babies and green things and songs). And what about Lloyd? He is a knitter, and drinker of teas. He is a walker of dogs. He is a maker of drawings and meals. One invisible labour of this book has involved listening better to the many kinds of making that propel him onwards. And what about me? Well, now I’m Zoe from Sesame Street in all correspondence with my Studio A community. Just because this research is over doesn’t mean the relationships won’t continue. I will continue to make in a way that has been enlivened by all that I have learned from the studios. And soon, the portrait I commissioned from Thom Roberts of my small family will be ready. I will hang it on my wall. Each of us with four eyes. ‘Thom’s way’. Notes 1 I have already been applying my insights in the adjacent feld of arts-based knowledge translation in health research through my work with the inimitable Katherine Boydell. We have developed and interrogated projects where creative art forms broker understanding between health professionals, people with lived experience of diagnosis or care, and the general public – aesthetic perception at work in the social feld of health (for example see Watfern et al., 2021; Watfern, Macdonald, Gilmore, Stone, & Elliot, 2022). 2 I’m also very interested in how this extends to our empathy and relationships with the more-than-human world. For example, I am certain there is much to learn from autistic consciousness about becoming more attuned with the sentient ecologies all around us. This would be a fruitful area for future applied research. 3 In another project I led with carers of people with dementia, we created one large textile banner whose slogan has stuck with me: “Care is a relationship not a role.”

References Atkinson, D.,  & Walmsley, J. A. N. (1999). Using autobiographical approaches with people with learning difculties. Disability  & Society, 14(2), 203–216. doi:10.1080/09687599926271 Bennett, J. (2012). Practical aesthetics. Events, afect and art after 9/11. London: I.B. Tauris & Co. Caine, V., Estefan, A., & Clandinin, D. J. (2013). A return to methodological commitment: Refections on narrative inquiry. Scandinavian Journal of Educational Research, 57(6), 574–586. doi:10.1080/00313831.2013.798833 Hamilton, A. (2009). Making not knowing. In M. J. Jacob & J. Baas (Eds.), Learning mind: Experience into art. Chicago, LA: School of the Art Institute of Chicago, University of California Press. Milton, D. E. M. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & Society, 27(6), 883–887. doi:10.1080/09687599.2012. 710008

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Simic, C. (1992). Dime-store alchemy: The art of Joseph Cornell. New York: New York Review of Books. Stewart, K. (2007). Ordinary afects. Durham, NC: Duke University Press. Tredinnick, M. (2011). The lyric stance. Island, (126), 60–70. Watfern, C., Doran, B., Dadich, A., Triandaflidis, Z., Habak, S.,  & Boydell, K. M. (2021). The HIVE: A co-created art installation about health. Public Health, 193, 26–28. doi:10.1016/j.puhe.2020.12.007 Watfern, C., Macdonald, G., Gilmore, I., Stone, L.,  & Elliot, M. (2022). Carer ‘craftivists’ make their point. Australian Journal of Dementia Care, 11(1), 11–13.

INDEX

Note: Page numbers in italics indicate a fgure on the corresponding page. 36 Millennium Trains (Roberts) 224, 225 1983 (Roberts) 97 Abudgiekeuote (Roberts) 222 Adams, K. 3, 19, 20, 69, 72, 85, 200, 205, 249, 252 Against Interpretation (Sontag) 4, 250 Agar, M. 49 Ahmed, S. 57, 61 Alcof, L. 47 Al Murray 194, 206–208, 219 art, defnition 7 Art as Experience (Dewey) 13 artist mentor/facilitator 2, 29, 109, 198, 253; Emma Johnston 35; Mark Tredinnick 60, 90n3, 143, 250; Rachel Hines 57, 90n4; Tony 41n3, 90n4 art psychotherapy 211 attention 5, 14–15, 49, 56–57, 69, 72, 104, 212, 247, 252–253 Australian Design Centre 128 Australian National Disability Insurance Scheme 18, 22 autism 9–11, 31, 70, 207, 208, 224, 237 autistic masking 208 autobiographical research 126, 127

Baby Bo (Roberts) 101 Baron-Cohen, S. 70 Barton, L. 125 Bateson, G. 60 The Beach of Four Suns (Saxon) 158 Benjamin, W. 95, 158, 205, 229, 241 Bennett, J. 53, 250 Berger, J. 57, 190 Berlant, L. G. 50 Betty Boo (Tindall) 124, 141, 142, 142 Beuys, J. 89 Big Anxiety Festival 48 Bishop, C. 53, 54 blades of fan (Roberts) 105 Blake, W. 46–47 Blue Rattler Machine (Roberts) 115 Boue, S. 72, 217 Bourriaud, N. 53 Brennan, K. 29 British Journal of Learning Disabilities 118 budgie keynote 221, 222, 223, 247 Caine, V. 61 calm bafement 70–72, 74, 82, 85, 252 Chodron, P. 60, 72 City Circle Line (Roberts) 95, 235–236, 242, 243, 252 Clandinin, D. J. 53, 61

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Cliford, J. 49 Cloud Heaven (Roberts) 12, 24, 94, 97, 98, 223, 236 Cole, J. 19, 80 Colley, P. 69, 74, 76, 79, 85, 200, 252 Colley, T. 20, 33, 39, 41, 75, 251 Comfortable with Uncertainty (Chodron) 72 Connelly, F. M. 53 Cooke, L. 56, 183 Corrigan, T. 193, 205, 206 Cosmic Equation (Saxon) 160 Costall, A. 70 Creative Growth Art Centre 8, 30–31, 84 Creature Red (Saxon) 156 crowns 224–227, 236–240 Crown Through the Magic Eye 1 (Roberts) 227 Deleuze, G. 50 Dewey, J. 13 Didion, J. 139, 140, 250 Did You Hear? (Persaud) 219 disability, social model 9, 12, 125 digital art programme 94 Dorner, R. 70 double empathy problem 70, 252 Down syndrome 8, 9, 13 Dubrovksy, N. 31 Dufy, J. 70 Dujour, F. 184–186 Easter Station (Roberts) 95 elemental empathy 70, 165 Emerson, R. M. 59 emotions 53, 190, 224 Encounters: Two studies in the Sociology of Interaction (Gofman) 181 Estefan, A. 61 ethics of care 81, 252, 253 ethnographic study 5, 48–51, 54, 56, 58, 61 eugenics 9, 127 exotifcation 178 A family of black bears (Roberts) 238, 240 Farah, M. J. 223 fction 49, 184 FIELD: A Journal of Socially Engaged Art Criticism 54 Finnegan, P. 33 The Flying Fox and The Tower (Saxon) 173–174

The Fool (Saxon) 182 Foster, H. 54 Fretz, R. I. 59 Frosted Webbing (Saxon) 164 Gabby, R. 203, 204 Gadiyar, S. 33, 34 Gardner, H. 9 Geertz, C. 49 Gemma 3, 4, 75 Glen Afric 193, 194, 202 Graeber, D. 31 Grandin, T. 190, 224 Grid and Diamonds (Brennan) 30 Hamilton, A. 6, 50, 92, 252 Haraway, D. 52, 57 Heberlein, A. S. 223 The Hermit (Saxon) 186 Hick, D. H. 104 Hines, R. 57 history: of anthropological texts 51; of ethnography 49, 61; life history research 56, 126, 127; of Outsider Art 61, 183 Hjorth, L. 54 How to Be Both (Smith) 53 The Hundreds (Stewart and Berlant) 50 Illuminating the Wilderness (2019) 48, 193, 199–200, 201, 210, 216 illusion 223 inclusive disability research 5, 126 institutionalization 9, 56, 253 intellectual disability 11, 72, 126, 245–246; artists with 2, 4, 9, 18, 20, 31, 46, 56; defnition 9; people with 19, 22, 38, 58, 61 intelligence 9, 10, 81, 224, 231 Intelligence Quotient 9 The Interpretation of Cultures (Geertz) 49 Johnston, E. see Woody Tiger Kangaroo Town Tunnel (Roberts) 28 Kenny Matthews Father (Roberts) 231 Kenny Matthews Tangara (Roberts) 235 Kenny Police Cop (Roberts) 23 Kentridge, W. 161 Kester, G. 53, 54 Kittay, E. 10, 80, 81 Kötting, A. 77, 78

Index

Kötting, E. 77, 78 Kuppers, P. 5 LeGuin, U. 188 Leong, D.-J. 70, 165, 166, 196 Leudar, I. 70 life-history research 127 listening 5, 14, 56, 57–58; of being-with 38–39; to people with intellectual disability 58; whole-body 38, 58 Lorde, A. 11 Louise Bourgeois: Drawings and Observations (Bourgeois and Rinder) 179 Macpherson, H. 38, 58 Madame Witch see Saxon, S. Madonna, K. (a.k.a Gabrielle Mordy) 2, 11, 23, 25, 31, 32, 96, 114, 118, 121, 151, 155, 171, 184, 188, 221, 223, 233, 234, 243, 246 Magical Handwriting II (Saxon) 162, 191 The Magic Photocopier Goes to Cloud Heaven (Roberts) 12 magic robot machine (Roberts) 99 magic show 241–242 Malcolm, J. 116, 250 Mandala 7 (Gadiyar) 38, 38 Manning, E. 10, 59 Marcus, G. E. 49 The Mask (2017) 206, 207 Matarosso, F. 53 Calandra, M. 168–169, 184, 234 McDonald, S. 121, 143 McGuinness, C. 226 McMahan, J. 81 Méliès, G. 160 Meltzof, A. N. 69 mentorship 109 Miller, C. 229 Millipede (detail from Chloe’s crown reading) (Roberts) 226, 239, 240, 247 Milton, D. E. M. 252 mindblindness 70 miniscule writing 165 The Minor Gesture (Manning) 10, 60 Mirror Image of Faces (Roberts) 246 Mitchell, J. 39 Mitchell, V. 128 morality of personhood 10 Muecke, S. 50

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multiple intelligences 9 Museum of Contemporary Art in Sydney 48, 88, 205, 216 Nancy, J.-L. 38 narrative inquiry 11, 61, 250 The National 2019: New Australian Art exhibition 228 National Centre for Creative Learning 216 Nelson, M. 95, 250 neurodivergent 10, 14, 20, 84, 85, 89, 181, 198, 211, 253 neurodiversity 9, 10, 11 neurotypical people 70, 72 New Year’s Day (2004) 80 Night Webbing (Saxon) 161 Nobody Nowhere (Williams) 166 notebooks 118, 122, 123, 139–140 The Not Knowing of Another (2008) 68, 68, 73, 81, 85 The Oddysee (Saxon) 150, 151, 153, 163, 176, 252 Oliver, M. 9 oppression 51, 52, 125, 126 An Other Academy (Rhodes) 22 Othering 47, 48, 50–52, 54, 61, 183 Outsider Art 183; identifcation of 51; narratives of 22, 51; othering 61 performance for Cementa Festival (Saxon) 175 Persaud, S. 193, 195, 206, 207, 209, 217, 218, 219, 249 person-centred reviews 207 Person Perception Network 223 Phoenix Art Space 34 photocopying 9, 12, 95, 95, 115, 229, 230 Picasso 182, 217 Positive and Negative of Thom Roberts (Roberts) 228 Postcards Home 244–245 Prince, D. 224 Project Art Works 9, 46, 48, 52; bin 88; collaborative workshops 71; Illuminating the Wilderness 194, 197, 201, 210, 216; methodology 20; In the Realm of Others exhibition 41; Smith, Sam 215; Smith and Hines 213; team 21 Project Paul 19

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quasi-psychic insights 172 In the Realm of Others (Pavilion) 40, 41 recycling 103, 106 Red Tail Black Cockatoo Hand Puppet (Tindall) 137 Relational Aesthetics (Bourriaud) 53 Remington, A. 223 Rhodes, C. 21, 31, 46, 47 Roberts, T. 1, 9, 47, 55, 93, 221, 222, 240, 249; and Angelmouse 108–111, 110; animation 94; cartwheels practice 114; and Castalucci 112; desk 36; experience of autism 11; memory box 106, 107; room 103, 106; and Santa Claus 111–113 Rosaldo, R. 189 Rughani, P. 79, 80 Rush Hour at Cloud Heaven (Thom and Angelmouse) 24, 24–25 Salle, D. 116 Savarese, R. 223, 224 Saxon, S. 249; dollies 147, 150; as Katerina 146; as Madame Witch 169; and Plummer 154 Scott, J. 8 Sedgwick, E. 8, 47 sensory qualities 59 The Serpent (Saxon) 179 Sexton, C. 82, 83 Sharp, K. 54 Shaw, L. L. 59 Showyin, D. 6, 7, 249 Siegenthaler, F. 54 A Silvery Side (Roberts) 32 Simic, C. 241, 254 Singer, J. 10 skull (Tindall) 132–135 Smith, A. 53 Smith, R. H. see Roberts, T. social-cognitive mechanisms 69 socially engaged art 52–54 social model of disability 9, 12, 125 social stigma 9 socio-cultural norms 208 soft sculpture (Saxon) 118, 141, 149–150, 152 Sontag, S. 4, 6, 47, 59, 181, 250 Squares and Windows on Weaving (Showyin) 7

Staring: How we look (Garland-Thomson) 57 Stewart, K. 5, 50, 59 story, defned 53, 60 Studio A 9, 18, 21, 46, 48, 52 Studio Artes 18, 22, 25–29, 35, 102, 106–107, 108, 155, 234, 243 supported studios 21–22, 29, 46 support workers 37, 140 TAFE (technical and further education) 102 tarot reading 170, 172, 179–181, 189 Tate Liverpool 48, 189, 199, 204, 209, 210 Taussig, M. T. 95, 139 Tesselate (2016) 213 theory of mind 68–70, 86 thin-flm interference 61 Thompson, E. 205 Thom Roberts Counts Trains (Roberts) 229, 229–230 Thom Skulls (Tindall) 35 Tindall, L. 2, 35, 118, 127, 133; artwork 132; childhood 124; conference 136; dresses, formal 128–131 Touching feeling: Afect, pedagogy, performativity (Sedgwick) 8 In Transit (2010) 206 Tredinnick, M. 60, 250 Using Things as Art (Hick) 104 valuing art objects 31 visual art programme 26 voyeurism 178 Walmsley, J.A.N. 127 Ways of Seeing (Berger) 57 Wheel of Fortune (Saxon) 177, 178 White, R. C. 223 whole-body listening 38, 58 Williams, D. 166 Woody Tiger 2, 6, 35–37, 36, 96, 98, 99, 118, 226, 236 Workshop 19, 71, 75 Writing Culture (Cliford and Marcus) 48–50 Zen masters 41