Disability Culture and Community Performance: Find a Strange and Twisted Shape

Disability Culture and Community Performance

Also by PETRA KUPPERS: COMMUNITY PERFORMANCE: An Introduction THE COMMUNITY PERFORMANCE READER (co-edited with Gwen Robertson) CRIPPLE POETICS: A Love Story (with Neil Marcus and Lisa Steichmann) DISABILITY AND CONTEMPORARY PERFORMANCE: Bodies on Edge THE SCAR OF VISIBILITY: Medical Performances and Contemporary Art

Disability Culture and Community Performance Find a Strange and Twisted Shape Petra Kuppers

© Petra Kuppers 2011 All rights reserved. No reproduction, copy or transmission of this publication may be made without written permission. No portion of this publication may be reproduced, copied or transmitted save with written permission or in accordance with the provisions of the Copyright, Designs and Patents Act 1988, or under the terms of any licence permitting limited copying issued by the Copyright Licensing Agency, Saffron House, 6–10 Kirby Street, London EC1N 8TS. Any person who does any unauthorized act in relation to this publication may be liable to criminal prosecution and civil claims for damages. The author has asserted her right to be identified as the author of this work in accordance with the Copyright, Designs and Patents Act 1988. First published 2011 by PALGRAVE MACMILLAN Palgrave Macmillan in the UK is an imprint of Macmillan Publishers Limited, registered in England, company number 785998, of Houndmills, Basingstoke, Hampshire RG21 6XS. Palgrave Macmillan in the US is a division of St Martin’s Press LLC, 175 Fifth Avenue, New York, NY 10010. Palgrave Macmillan is the global academic imprint of the above companies and has companies and representatives throughout the world. Palgrave® and Macmillan® are registered trademarks in the United States, the United Kingdom, Europe and other countries. ISBN 978–0–230–29827–9 This book is printed on paper suitable for recycling and made from fully managed and sustained forest sources. Logging, pulping and manufacturing processes are expected to conform to the environmental regulations of the country of origin. A catalogue record for this book is available from the British Library. Library of Congress Cataloging-in-Publication Data Kuppers, Petra. Disability culture and community performance : find a strange and twisted shape / Petra Kuppers. p. cm. Includes bibliographical references and index. ISBN 978–0–230–29827–9 (alk. paper) 1. People with disabilities and the performing arts. 2. Performing arts—Social aspects. 3. Artists with disabilities. I. Title. PN1590.H36K87 2011 791.087—dc22 2011012058 10 9 8 7 6 5 4 3 2 1 20 19 18 17 16 15 14 13 12 11 Printed and bound in Great Britain by CPI Antony Rowe, Chippenham and Eastbourne

Contents List of Illustrations

vii

Acknowledgements

ix

Introduction An anthropology of disability culture Traditions Sins Invalid Cripple

1 3 12 14 23

Part 1 Making a Home 1 Landscaping: Spacings Space and meaning Communication and process Audience and process Outlook

35 38 41 45 48

2 Dancing Stories about Home: Aotearoa/New Zealand Land stories Translation and intimacy Trouble in paradise Seacliff

50 51 55 62 66

3 Community Arts and Practices: Improvising Being-Together Local stories Methods: the ‘Lady of the Lake’ Anxieties: ‘Sleeping Giants’ Conclusion: community art

70 72 77 83 85

Part 2 Rhizomes/Connections 4 Towards a Rhizomatic Model of Disability Rhizomatic disability Disability/poetry Communal performance

91 94 97 101

5 Burning Butoh: Self/Community 5.1 RHIZOME: CHOREOGRAPHY OF A MOVING WRITING SELF

109

v

111

vi Contents

5.2 RHIZOME: COLLABORATION 5.3 RHIZOME: SOMATIC POETICS

122 142

Part 3 Memory Touch 6 Anarcha and Felaweshipe 6.1 PERFORMING ANARCHA 6.2 THE ANARCHA PROJECT ESSAY: REMEMBERING ANARCHA Anarcha and disability culture history The stun The contemporaneous archive: Sims speaks The contemporary archive: speaking about Sims Epilogue: the visibility of ghosts 6.3 THE ANARCHA PROJECT PERFORMATIVE LECTURE 6.4 THE ANARCHA PROJECT: A PROCESS REPORT Fractured storytelling Contentious community Touch contact Shame Arts-methods: song The Anti-Archive

153 156 158 160 165 168 173 176 180 188 188 189 191 192 200 202

Part 4 Myth-Making 7 Eurydice and Tiresias 7.1 TIRESIAN JOURNEYS 7.2 TEACHING DISABILITY CULTURE: TIRESIAS IN THE CLASSROOM Community performance, pedagogy challenges

209 212

Epilogue: The Poeti(x) of Disability Activism Deformation: DIY(x) the stone Reform/nation Form/ation Remediation: DIY(x) toward the new desiring machine

233 235 236 236 240

Notes

241

Bibliography

261

Index

274

226 227

List of Illustrations 1

Rodney Bell, in Sins Invalid performance, 2008 (Photographer: Richard Downing, provided courtesy of Sins Invalid)

22

Kanta Kochhar-Lindgren and Derek McCormack in Landscaping, Chisenhale Dance Space

39

Dance with a Difference class, Dunedin Cancer Society, 2005: rowing the waka

56

4

Dance with a Difference class, Dunedin Cancer Society, 2005: the taniwha’s claw appears

57

5

Olimpias videographer Nancy Higgins on Karitane beach

58

6

‘Earth Stories’ group at the old iron smelting works in Ystralyfera

73

Ystradgynlais Mental Health User Group participant, saying 'Hi!'

76

8

Still from ‘Earth Stories’ video

82

9

‘disabled lilacs’ still (Photographer: Lisa Steichmann)

106

Burning rehearsal, dancers Christina Braun, Neil Marcus, and Petra Kuppers (Photographer: Kelly Rafferty)

112

Burning workshop, Adelaide, Australia, with members of No Strings Attached

130

12

Drawings by Sadie Wilcox, part of Burning Wiki collaboration and Corporeal Distance exhibit (Photographer: Sadie Wilcox)

138

13

Burning circle after procession onto Port Townsend beach, part of a participatory performance for Goddard College’s MFA in Interdisciplinary Art cohort (Photographer: Linda Townsend)

145

Anarcha visit Old Town Alabama, Montgomery. Carrie Sandahl and Anita Gonzalez

189

Anarcha visit in Montgomery. Carpark site of J. Marion Sims’s clinic. Performer: Tabitha Chester

190

2 3

7

10 11

14 15

vii

viii List of Illustrations

16

Anarcha workshop, Anita Gonzalez and Tabitha Chester

195

17

Anarcha workshop in Ann Arbor, Michigan

197

18

Tiresias video still. Performer: Neil Marcus

213

19

Tiresias photo series. Performer: Kristina Yates (Photographer: Lisa Steichmann)

214

Tiresias video still. Performers: Lynn Manning and Tom Bayer

217

Tiresias photo series. Performer: Petra Kuppers (Photographer: Lisa Steichmann)

219

Tiresias photo series. Performer: Autumn Dann (Photographer Lisa Steichmann)

223

23

Tiresias photo series. Performer: Neil Marcus (Photographer: Lisa Steichmann)

225

24

Tiresias photo series: Performers Kristina Yates, Neil Marcus, Adam (the late Paul Cotton), Autumn Dann (Photographer: Lisa Steichmann)

232

Summer 2010 Olimpias group photo shoot. Chun-shan (Sandie) Yi, Sadie Wilcox, Neil Marcus, Petra Kuppers, Mark Romoser, Harold Burns (Photographer: Lisa Steichmann)

240

20 21 22

25

Acknowledgements The stories this book tells have been emerging for nearly a decade, and many people co-created the performances on which these stories are based. I wish to thank all my collaborators, the Olimpias community members, my academic peer community with whom I’ve been exchanging and editing material, my students, and the many workshop leaders who shared their insights into performance methods with me, and my activist friends who keep asking important questions about the relationship between cultural labor and world-change. I assembled and molded this book into shape during a sabbatical generously supported by the University of Michigan, with additional research funds from the Institute of Research on Women and Gender and the Global Ethnic Literatures Seminar. During my sabbatical, I benefited from close contact with faculty and students of the Performance Studies department, University of California, Berkeley, which hosted me as a visiting scholar. The final writing in response to insightful peer letters happened during a three-month fellowship at the Humanities Research Centre at the Australian National University in 2010. The performances I write about were supported in various ways, and I wish to particularly highlight two major fellowships: the Caroline Plummer Fellowship for Community Dance from the University of Otago, New Zealand, and the Institute for Medical Humanities, University of Texas Medical Branch, Galveston. The different cultural and disciplinary contact tensions I experienced during these fellowships taught me so much about respectful listening. This work benefited from generous discussions during research visits and short-term residencies, in places such as SymbioticA in Perth; the Tramway Contemporary Art Center in Glasgow; the Creative Industries Precinct at Queensland University of Technology; the Poetics of Healing Series, part of the Poetry Center at the San Francisco State University; the MFA in Interdisciplinary Art community at Goddard College in Port Townsend, Washington; and the Disability Culture Festival in Portland. So much of the thinking behind this book and my need to think formally about issues of voice and embodiment emerged in conversation with my co-workers and hosts at the Anarcha residencies in Montgomery, Alabama; at Davidson College, North Carolina; at the ix

x

Acknowledgements

Washington State University; the University of California, Berkeley; the University of Michigan; and the University of Ohio. I also wish to thank my artist/activist communities, in particular the Bare Bones Butoh crowd in San Francisco; the West Coast Contact Improvisation Festival; my wonderful co-faculty; the Contact Improvisation community in Ann Arbor, Michigan; the feminism/poetry/ embodiment/performance workgroup, in particular Eleni Stecopoulos, Denise Leto, and Amber DiPietra; the non-site collective in the Bay Area; the Subterranean Arthouse in Berkeley; the Duderstadt crew in Michigan; Centers for Independent Living that have supported discussions about the issues presented in this book; the Leaven Center disability culture retreat; the community at Arnieville/CUIDO; the Self-Advocates Resource Unit in Melbourne; ArtsAccess and community cultural development officers across Australia, and many others. During the writing of this book, I was on the board of the Society for Disability Studies, and this allowed me valuable contact with fellow researchers as we struggled on to find equitable and just community together. My colleague Amy Sara Carroll’s graduate class in Performance Studies at the University of Michigan generously read the draft manuscript, and offered me much useful engagement. I read many of these chapters in research seminars and wish to thank the University of California Berkeley, University of California Los Angeles, Stanford University, University of California Davis, University of California Riverside, Pitzer College, York University, the Ronald Beasley Center in Dunedin, Australian National University, and University of New South Wales for the opportunities for engagement. The epilogue was also generously workshopped as part of the Fictocritical Workshop at the UNSW in October 2010. I wish to thank two graduate assistants, Melanie Wakefield and Jina Kim, for all their work, and their friendly and supportive presence. Many thanks to my editor, Paula Kennedy, and to Penny Simmons, my simpatico copy-editor out among the deer, ravens and foxes of Glasgow’s edges. A number of people read the manuscript, or parts of it, and engaged in spirited debate with me, breathing life into it all: Ann Fox, Leora Amir, Sadie Wilcox, Scott Wallin, Richard Schechner, Clare Croft, Shelley Manis, Nancy Higgins, Carrie Sandahl, Susan Schweik, Jacqueline Shea Murphy, Vida Migelow and Jane Bacon, Kate Elswit, Gwen Robertson, and Neil Marcus. Thank you, everybody. Glad to make a life with you.

Acknowledgements xi

Earlier versions of parts of chapters have appeared before, but have been reshaped and integrated into this book’s narrative. Chapter 1 appeared originally as ‘Landscaping: Spacings,’ Women and Performance 26 (2003): 41–56, and has been enlarged to encompass the reflection on collaboration and collaborators’ subsequent publications on the process. Pages of Chapter 2 were initially part of the project report, and appeared in ‘Dancing Stories: A Community Dance Residency in a Hospice in New Zealand,’ Environmental Communication: A Journal of Nature and Culture 2.3 (2008): 274–80. Chapter 3 appeared in an earlier version in ‘Community Arts Practices: Improvising Being-Together,’ Culture Machine 8 (2006). A version of ‘Toward a Rhizomatic Model of Disability: Poetry, Performance, and Touch’ appeared in the Journal of Literary & Cultural Disability Studies 3.3 (2009): 221–40. The first of the Burning meditations appeared in a different form, focused on Butoh and embedded in a discussion of Butoh’s transnational character, in the journal Choreographic Practices 1.1 (2011). A different version of Chapter 5.3 appeared as ‘“your darkness also/ rich and beyond fear”: Community Performance, Somatic Poetics and the Vessels of Self and Other,’ M/C, Media/Culture Journal 12.5 (2009). The Anarcha Project essay with the historical background to the project was widely disseminated during the Anarcha residencies, as it provided the basis for our participatory performance work. It appeared in ‘The Anarcha-Anti-Archive’ Liminalities: A Journal of Performance Studies (Summer 2008), together with many fragments of voices from the project’s journey. The Anarcha Performative Lecture is the script for the performance video on the Anarcha Project DVD, The Olimpias (2008). In Part 4, the creative non-fiction dramaturgy essay appeared as ‘Tiresian Journeys’ in TDR: The Drama Review 54.2 (Winter 2008): 174–82. Fragments of the Epilogue appeared, artistically deformed by an editorial collective, in the inaugural issue of the online Epistemologies Humanities Journal (2010), and my poetic material from the Epilogue appeared first in Disability Studies Quarterly and the website Poets for Living Waters. The photo montage illustration on the book cover shows: Tiresias photo series. Performer: Jonathan Grey (Photographer: Lisa Steichmann); Permeability, at West Coast Contact Improvisation Festival 2010. Performers: Val Smith and Petra Kuppers (Photographer: Nick Kane);

xii Acknowledgements

Burning rehearsal. Dancers: Christina Braun, Neil Marcus and Petra Kuppers (Photographer: Kelly Rafferty); Tiresias photo series. Performer: Neil Marcus (Photographer: Lisa Steichmann); Tiresias videostill. Performers: Jim Ferris and Aimee Meredith Cox; Tiresias videostill. Performer: Katherine Mancuso; Witnessing image created by Harriet and Petra Kuppers, in Dunedin Hospice, New Zealand. The colors are manipulated to capture Harriet’s favorite place, on the Otago Peninsula; water burns sun production still from Burning (Photographer: Keira HeuJwyn Chang).

Introduction

Find a strange, twisted shape. This is an instruction Sonsherée Gilles gives out at an Axis Dance workshop. I repeat: find a strange and twisted shape. We are in a workshop on physically integrated dance practice, that is, dance practice open to people with different forms of embodiment, including disability. The specific theme of this evening’s workshop is Shape, the shape our bodies can make. We have thrown ourselves into asymmetrical ones, have made the smallest one possible, pushed all air out. We have made shapes that take up lots of space, have moved from one into another without hesitation, created shapes that are full of edges like frozen sculptures, and some that are rippling and flowing like water across our limbs. But at this instruction I perk up. Find a strange, twisted shape. My body-ear-mind, usually easily obedient to dance instructions, throws a wrench into my movement works. What does it mean to put ‘twisted’ and ‘strange’ together in a physically accessible dance class? On the ground around me are plenty of people who live in twisted bodies, to whom the twist is not strange, but a deeply familiar way of experiencing their bodies’ everyday frontality, location, or elevation while standing or sitting. My own body has a lot of symmetry, but the instruction suddenly makes me aware of my hunched shoulders, a certain lack of muscle tone from extended wheelchair use that I try to combat by extensive dancework, but that is not the same as the muscle tone and comportment I experienced when I was predominately a walking person. I look around myself. Behind me is my life partner, Neil Marcus. He is not dancing with us, but merely observing, since he just added a new and still metal-stapled scar on his abdomen from a recent fall. He is dystonic, a condition similar to strong cerebral palsy, and I can see his foot reaching out into space, elegantly folded over like a ballet dancer 1

2

Disability Culture and Community Performance

in pointe. Neil is crunching and rustling right now: he’s taking the opportunity of our extended shape improvisation to eat a sandwich, and contorts his body to get his mouth over the bread. To watch Neil eat is like a study in concentration. He puts great effort into placing limbs, face and food into just the right relation to one another. This twist is necessary and a work of art – but how ‘strange’ is it to Neil, or to the observer, including the many photographers who have fallen in love with him over the years and have created a catalogue of images of his highly photogenic everyday life? The plastic bag rustle adds to the soundscape of moving bodies, hands breaking falls on the floor with a bang, zippers and fabric whooshing on the cool wooden floor in the Interplayce Studio on Telegraph Avenue, in Oakland, California. In this dance class, we are in a laboratory of disability culture. We are in an environment where many disabled people come together and operate on their own terms, in conversation with non-disabled spaces, ideas, values and concerns that surround us. This environment is the space of this book.1 As in a class of dance fundamentals, this book throws shapes, and orients itself in space. The chapters here move from one shape to the other, and pay attention to the desires and instructions that initiate movement. At times, the chapters arrest, and contemplate what is going on. Like I orient myself, my bodily posture, in the dance class by paying attention to the dancers around me, I write this book by orienting myself in relation to different, sometimes surprising disciplinary discourses, to theoretical framings both close to my argument and far away, and to the different shapes that critical writing can take. I look the other way. Across the studio from me my eyes meet the eyes of a woman I haven’t danced with before. Some of us in this Axis workshop are old hands at this, and have done a number of workshops. Some of us are here less to learn about Axis methods, and more for the companionship of other disabled dance artists. A lot of disabled dancers I know are glad for the opportunity to dance with other dancers to whom different forms of embodiment are not strange, but familiar in their individual strangeness. There is so much less explanation necessary. There is no ‘special status,’ barely disguised stares, or the enthusiastic ‘oh, let me dance with the chair’ attitude we often experience in workshops in which non-disabled dancers dominate. Others in the room are just happy to not be in the limelight with their differences: they might have been told that they can’t dance (in a normate-focused class),2 that they aren’t beautiful, not right, or that they could hurt themselves. Axis workshops and other physically integrated dance environments are havens for many of us, places where we can be free

Introduction 3

to explore who we are. Maybe the ‘twisted and strange’ instruction twisted me out of that place of freedom, for a brief moment, and into the external, normate-informed eyes upon mine and other bodies. Maybe that’s what the woman across the room is thinking. The look in her eyes tells me that she has also just been jarred out of her movement flow (and Neil tells me later that he also distinctly felt reflective, jarred, by the instruction). The woman across the room had offered in the initial sharing circle that she had recently broken her right hand and foot, and is still involved in building new muscle mass now that the bones have healed, and that her mild cerebral palsy and its asymmetricalizing effects are currently accented by her injury. Twisted but unstrange could be very much the embodied vocabulary, or, to use phenomenological terms, the body-schema of this woman. But I am projecting desires and knowledges onto this woman, and it is only my own mind I have access to: in the end, I have to come back to my own sensation, my own dance.

An anthropology of disability culture While it has been traditional practice to erase the researcher’s body from the ethnographic text, ‘subjective’ bodily engagement is tacit in the process of trying to make sense of another’s somatic knowledge. There is no other way to approach the felt dimensions of movement experience than through the researcher’s own body. (Sklar, 2000: 71) What I am doing here in giving these glimpses into my thoughts at the Axis workshops is creating a participant-observer account of my experience as a long-standing member of disability culture.3 It’s a strange (and twisting) thing to call into being. What is disability culture? Is there one, are there many? Who calls cultures into being? The chapters in this book circle around this theme, and come back again and again to the impossibly possible culture that emerges when crips, disabled people, cripples, people with disabilities (for we all use different terms) come together.4 Thus, in this workshop, we pay attention to our bodily being (and eat when necessary). Many of us help each other out with the bare necessities (like peeling a mozzarella stick out of its plastic cover, inserting a straw into a cup, or feeding someone). Few of us are fazed when things usually hidden in normate life intrude in our sessions: when someone needs help to go to the bathroom, when pick up/drop

4

Disability Culture and Community Performance

off are not invisible, extraneous parts of a workshop, but are vitally important access issues which need to be taken into account. In my writing about this particular workshop, I make strategic choices. My use here of the words ‘we’ and ‘us’ is provisional, performative, these words call something into being. They mark my desire to reach towards something called ‘disability culture,’ rather than try to tell you what other people in that workshop thought. Disability culture: there is a fine line here, between exclusionary essentialism on the one hand, and, on the other, the desire to mark the differences that disability-focused environments (which can include both non-disabled and disabled people) offer to mainstream ways of acknowledging bodies and their needs. I do not think that disability culture is something that comes ‘naturally’ to people identified or identifying as disabled. And I do not think that disability culture is closed to non-disabled allies, or allies who do not wish to identify as either disabled or not. To me, disability culture is not a thing, but a process. Boundaries, norms, belongings: disability cultural environments can suspend a whole slew of rules, try to undo the history of exclusions that many of its members have experienced when they have heard or felt ‘you shouldn’t be like this.’ At the same time, disability cultural environments have to safeguard against perpetuating or erecting other exclusions (based on racial stereotypes, class, gender, economic access, internalized ableism, etc.). This is all a lot of work, trying to think without victimization and exclusion, forgiving others and oneself when it is not yet working well, and being aware of the many different forces of privilege and power that mark how we got here, into this workshop, or onto the pages of this book. It needs an ongoing flow of contact, touch, questioning and affirmation, a flow of love. There is juice in disability culture work.5 In disability culture settings, whether in art workshops, conference settings, meetings and the like, I often watch or engage myself in wayward, unusual behaviors, behaviors that might not be considered ‘normate,’ but which offer me ways of thinking about what is excluded from the norm, at what price hegemony is maintained. I drop from my wheelchair to the floor if I need a stretch, take five, even retreat to the safe room, or cool-down room, when there is too much external input and I need a time-out. More and more disability-focused conferences offer these kinds of sanctuaries, build these features into their provision of access. I value the way that inclusion as a process, as a never-ending attention to the design feature of ‘normality,’ emerges in these access features.

Introduction 5

This book offers features like these, too: many different styles, different rooms, different voices. I would like to encourage readers to be active in their navigation of this book, this volume, this artifact you hold in your hand. If a text feels too loose or too open, move on a bit, and you will find a more recognizable story or argument structure, and if something is too structured, it won’t be long before the text drops into a different register. Themes and arguments all modulate through multiple forms, and no learning/reading/engagement style will chime with all of them. Multiple entry points and an acknowledgment of active, engaged and desirous reading practices are part of my access strategy. The familiar faces and bodies in the Axis workshop room include Pamela, a woman Neil and I have worked with often over the years. She’s in her eighties, and enjoys physically integrated work since no one is too freaked by her aging body and its movement vocabulary. She always shares in the initial circle that her pink skin is fragile, and indeed, I witnessed her a while back sustaining a rip to her thin skin that took off a whole sheet on her shin and necessitated a quick trip to the hospital. While there was blood on the floor, no one was too disturbed, indeed, we were prepared, and she reappeared the next day to dance on (bandaged, and a bit more gingerly). Pamela is a delightfully disobedient dancer: she breaks out into improv easily, and any instruction that demands extended stillness is likely to be broken by her bodily desire to touch someone, to glide into a slow rhythm with her hands and feet. She’s been in my own contact improvisation classes, and also in the audience in a few of the pieces I directed over the past years. I see her at much disability culture work, performance work that emerges out of disability aesthetics, out of the shapes, senses and emotions of bodyminds labeled as ‘different,’ art that happens outside conventional genres and spaces. Since I encourage audience participation, I am always glad to have her, as I can count on her to quickly loosen any constraints audience members have in engaging physically with the action. And so I begin to speak about my own productions, as Artistic Director of The Olimpias, an artists’ collective. This book is not only about art created by disabled people as part of a cultural movement, it is also an artist’s book, a participant-observer’s perspective on disability art in its shifting and changeable forms. It represents an account of a producer of disability culture experiments, a dramaturgical analysis of how shapes, themes, readings and practices come together, freeze for a moment, and glide on our wheels past each other. This book is not only about art by people with physical impairments, although these representations dominate. In the Olimpias projects were people with

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Disability Culture and Community Performance

sensory, emotional, and cognitive differences, with illnesses, addiction issues, and with conditions that challenge the boundaries of these categories.6 There is no breakdown of specific impairments or medical or personal diagnosis language in these chapters. My own form of embodiment does set the rhetorical frame for the book, though, so issues about the navigation of space or the interiority of pain are often at the forefront of the discussions and analysis, and so are reflections on the painfulness of community performance.7 To go along with this, hopefully, also expressive in this book are the safe-keeping mechanisms, the love and care, the attention even in strife and disagreement, that characterize the communal performance work I have been part of, the reach towards community. This performance work does not aim to (only) create beautiful products, but wishes to shape a more accessible and respectful world for all of us, a world I can and wish to live in. I do not give diagnostic categories for myself and my own physical and mental differences. I shroud my own privacy, in keeping with the culture that nourished me first, UK disability culture with its focus on the old social model of disability, where diagnoses and individual (overcoming) stories are discouraged. The different politics and aesthetics of disability culture will emerge at many points in this book. There are many ways that liberatory, social justice, civil rights, or identity movements have harnessed the power of individual and communal story, voice, movement and poetics. My way of being in the world emerges in form, like playwright Chuck Mee’s does, a self-described ‘old crippled white guy’: I find, when I write, I don’t want to write well-made scenes, narratives that flow, structures that give a sense of wholeness and balance, plays that feel intact. Intact people should write intact plays with sound narratives built of sound scenes that unfold with a sense of dependable cause and effect; solid structures you can rely on. That is not my experience of the world. I like a play that feels as if a crystal goblet has been thrown on the floor and shattered, so that its pieces, when they are picked up and arranged on a table, still describe a whole glass, but the glass itself is in shards. To me, scenes should veer and smash up, career out of control, get underway and find themselves unable to stop, switch directions suddenly, break off, come to a sighing inconclusiveness. If a writer’s writings constitute a ‘body of work,’ then my body of work must feel fragmented … that feels good to me. It feels like life, it feels like the world. (2006: 233–4)

Introduction 7

His ‘intact’ I read as a rhetorical puppet, not an essentializing dividing line. Who is ‘intact,’ anyway? But basically, yeah. Right on. The artists’ collective I have led for the past 15 years is called Olimpias. Fragments, multiple perspectives, a dance of projections, moving between cultural stereotypes and limping into a feminist future: these are some of the associations that name has for me. ‘Olimpia’ is the name of the robot woman in E. T. A. Hoffmann’s Sandman, and the story has in turn served as the basis for Freud’s exploration of the uncanny. In the story, Olimpia is a mechanical woman who dances, and who becomes the object of multiple desires, wishes, erotic fantasies. In the queer logic of poetic naming, I found the reclaiming of agency-less Olimpia to be a fitting term for work that addresses how popular culture views disabled people, and scatters these expectations in the delirium of a technological dance.8 Prostheses, wheelchairs, crutches, canes, glasses, and hearing aids – the list of technologically enhanced access points of Olimpias participants is endless. Equally endless and, at times, exhausting, is the list of partialities, allegiances, pathways that intersect and construct us in other ways: we are differently gendered, sexed, classed, racialized, cultured, nationalized. We live in tension and in love with these labels, and carve out space for our creativity where we can. We use technologies like digital video, photography, sound recording, sensors, and telematic internet presences as ways to infiltrate imaginaries. Like the stillness and twirl of Hoffmann’s Olimpia (called Coppelia in the ballet based on the story), desire, erotics, and touchings of strange matter shape the aesthetics of our installations. Audiences glimpse us through doorways, out in the open fields, in storefronts, and, nude, in public parks or old stable barns, engaged in unclear acts. We behave like Coppelia in Maguy Marin’s 1994 Lyon Opera Ballet production of Coppelia, where Olimpia returns as a multiplying woman in red, a strange vision moving through run-down housing estates. The dancefilm of this production influenced my own video and performance aesthetics: out of the studio, into the everyday, in deep engagement with the myths that make our world’s meaning. The uncanny, the sense of non-home, dislocated fascination, and repressed returns swing through many Olimpias works. The tense poetry between agency and helplessness, the violence and the deliciousness of vision, and the seduction of movement drive Olimpias’ labor. In a recent performance experiment, a number of Olimpias participants assembled in the University of California Berkeley Telematics Laboratory. In their studio, named the Cave, a 24-camera array captures the performer who steps into it with multiple images, which a computer

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assembles into a 3-D image, an avatar. At the moment, there are no 3-D output systems: that would be Star Trek’s hologram. But the moving avatar in its three-dimensionality can interact with other avatars captured in other, similar caves in other research laboratories, and so bodies with depth but without mass can interact with one another over long distances. An Olimpias crew, some experienced collaborators, some new people interested in checking it out, were in the Cave, and began to explore the specific rules of visibility that reigned there, looking for the spaces where visuality, projection, the illusion of presence fragments. The Cave is calibrated to give best definition at a standing person’s upper torso and face height. Since a number of us were floor dancers and wheelchair users, the technical specifics of the Cave already proved a rich place of play with the limits of the system. The engineers who maintain the system and develop it aim at naturalistic representation, at becoming recognizable and transparent, ‘like ordinary.’ Our Olimpias agendas were different: the fractured, the fragmented, the system limits was where we wanted to push our dance. The Cave reads light pinkish skin tones best: again, a challenge, since some of our participants have much darker tones than that. And thus we stripped in the Cave (to the consternation of some technical personnel), to heighten the game with contrast and color. Our aim was not to expose any specifically ableist or racist shortcomings of a system in development, in an accusatory fashion. Instead, we found it fascinating and useful to push a form to where it breaks down, to see what faces, bodies, narratives, or techniques stress it and pull it out of shape. We received very little material back from our excursion to the laboratory. All the nude performance experiments were erased by computer failure, we were told, and the only file that made its way back to us is a short clip with Neil and me, fully dressed, moving gently in our first attempt to find out what the Cave is about. We slowly twirl around each other, falling in and out of visibility, our bodies merging and hollowing, deep cylinders, volumes in contact. We are recognizable, not by our features, but by the patterns our movement makes as our bodies fragment and smear like far away galaxies across the black background. Olimpias: visible and invisible, recognizable and strange, engaged in a seduction that is not quite recognizable, not quite clear, but present. And although the 3-D files never made it into our hands, never became part of a dancevideo, our engagement in the Cave has touched the space and the engineers who work in it: the process is more important than a spectacular product, the knowledges gained and the risks of

Introduction 9

exposure taken become the goal of this performance practice. Olimpias dances in the interplay between flesh, technology, and the gazes that traverse them. Of course, when I try to give someone our name without launching into a long explanation involving androids, Hoffmann, Freud, and Marin, I just say ‘Olimpias, like Olympics, no y’s, just i’s, think limping gods.’ And that serves well, too. Finding space, space to breathe, to be, to dance, has been an ongoing project in my journey as a critic. In my previous two books, I also focused on art productions by people who live with, or are perceived to live with, either disability or medical diagnoses like cancer. My argument in my first book, Disability and Contemporary Performance (2003), focused on the ways that disabled artists play with the systems of representation by making their material, living being experiential in its unknowability. In my second book, The Scar of Visibility (2007c), I focused more specifically on one particular theoretical perspective, a Merleau-Pontian phenomenology, to address the political valence of ‘bodily fantasies’ – the ways the interior of our bodies become felt, imagined, and represented. By locating this new writing in an embodied, experienced location, on the floor in a dance workshop, and by hosting the multiple sensations and thoughts that pass through me in writing, I continue this phenomenological, self-reflexive attention. In order to find openings, and to theorize ‘energy,’ this word that comes up again and again in my choreographer/scholar’s writings, I have previously used a number of critical theorists’ framings of representation: Benjamin’s flaneur, discussions of performativity and repetitions with difference, Derrida’s différance, the Bergsonian Open. In this book here, I leave the term energy and its companion, vibration, with quite some space, and resist definition. I speak of energy between words, between skins, in encounters between performers and audience, and between movement and writing. To me, these moments have to do with a desire for connection, with emotional/embodied wishes for something that goes beyond the discursive. I also resist using the word ‘affect’ too often here, although there’s a lineage from this word to this study. Movement and embodiment scholars like Nigel Thrift (1997 and 2004, in relation to cultural space studies) and cultural studies scholars such as Elspeth Probyn (2004) and Sara Ahmed (2004) use ‘affect’ rather than ‘emotion’ to speak about the body rather than cognition (a separation all acknowledge as problematic, but which points to hierarchies of knowledge and the history of the way knowledges are valued).9 In using

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the word ‘energy,’ I take the concept out of psychology and cultural studies discourses, and back to where I encountered it, and where it is a familiar and normalized concept: in dance classes, in the basic vocabulary and practice a dancer or choreographer needs to sense, engage with, and manipulate when creating performance work. By leaving energy and vibration in the realm of the artful, the creatively crafted, I wish to intervene into the multiplicities of affect-studies out there as I try to capture my subject in an alternative framework, appropriate to its desire for these alternative frameworks. The emphasis on artists’ political action places my critical project in a context that identifies with a directed, political, artistically articulated and shrouded, but yet urgent and necessary agenda. I am fascinated by how artists use specific experimental techniques towards self-empowerment, system critique and identitarian allegiances (in various combinations).10 My theoretical techniques allow me to imagine – desirously, never neutrally – the spaces open for liberatory readings, for subversive understandings, for new configurations of living together, for an exciting embodied scene. I wish to subvert conventional ways of reading bodies and minds, to read toward intertwined and interdependent embodiment and en-mind-ment. I am part of what I chart, and contribute to the shape of the field of disability culture as a producer, curator, festival and conference organizer, and as a critic. Following Mark Sherry’s reflections on his ethical stance towards his research, which involved intimate and non-hierarchical relationships with fellow brain-injury survivors in support groups in Australia (2006, 16ff.), I try to avoid the word ‘insider’ to characterize myself,11 to avoid dichotomistic distinctions and clear boundaries between the inside and outside of disability culture, disability experience, and authenticity. I use ‘culture’ here more like a verb than a noun, more like a process than a state, more like a form of attention than a fixing container. As in my experience in the dance class, who I am is in flux and improv, momentarily arrested, in and out of flow, experience, reflection, and mindful attention. It is this dancerly experience rather than any one identity model that characterizes my identitarian and emotional connection to this nebulous entity, disability culture. Writing this book is the next step on the journey, a different shape I throw into space. In each of my previous books, I dedicated the last chapter to a discussion of how the work of the Olimpias emerged during the writing of the particular book in dialogue with that book’s theme, how I felt nourished and supported by my creative community. This allowed me to contemplate my theoretical perspectives on my writing through embodied and engaged practice.

Introduction 11

This manuscript uses a different format. The theoretical embedment is now more implicit, still informed by the same intentions, but at times less available on the surface of the chapters I am presenting here. Instead, I am using experimental creative approaches to writing criticism. I am influenced by the experiments earlier desirous writer/critics and poet/ researchers undertook to convey their critical interventions. Jacques Derrida’s Glas; Antonin Artaud’s work; essays by Benjamin, Cixous, Irigaray, Deleuze and Guattari; fictocritical narratives such as the cultural encounter and space-making work of writer Stephen Muecke, visual artist Krim Benterrak, and Aboriginal elder Paddy Roe (1984); experimental anthropologists like Kathleen Stewart, Alphonso Lingis, or Michael Taussig; performance studies scholars like Soyini Madison, Della Pollock and Peggy Phelan: all of these writers employ memoir, textual arrangement, the juxtaposition of photograph and text, or text and text, poetic play with signifiers, to unmoor the certainties of signification. Some of these writers will appear as touchstones in these chapters, but not as texts to be deciphered. The chapters enact how questions of language, embodiment, and performance can leaven disability experience. Thought patterns developed in critical theory can open up ambivalences which, in turn, create space around identity and allow for new perspectives. But instead of declining these thought patterns through multiple commentators, I make use of these patterns, and show how cultural producers in disability culture can fruitfully engage them, and live (with) them. This book works with performance, not (only) about it, with poetics, not (only) about it, it uses choreographic, deconstructed, fragmented writing instead of creating discourse around these forms and aesthetics. I do not think of these chapters as a-theoretical (or post-theoretical), I instead posit that theory moves eel-like in the realm of form, and asks a reader to activate her reading strategies, to listen to disjunctures, lacunae, secrets, the shift in registers. As I embody a witnessing participant in art practice, I wish for readers who activate their own passionate readings. Art practice is part of the methodology of this book. With this, aspects of this book relate to two areas of investigation that have influenced the art academy in the United States, the United Kingdom, Australia, and other countries in the past decade: the discussions of performative writing, and the investigations of practiceas-research. This book sees itself in neighborly relations to both these fields. My personal biography intersected at many times with these concerns. I remember walking across a soggy Welsh moor with a graduate workshop at the Aberystwyth Center for Performance Research, led by

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Peggy Phelan, in the 1990s, on the theme of ‘performative writing.’ Phelan’s experiments with slanted text, italicized levels of presence, and close readings on the limits of self and other are important guides and interlocutors for this project. I also remember another rainy day, this time in Alsager, near Crewe, in the United Kingdom, welcoming many emerging writers in practice-as-research as one of the organizers of Intensities: Praxis and the Body, a graduate conference at Manchester Metropolitan University, in 2001. I now lead yearly symposia on artsbased research, mainly at the University of Michigan, where late winter snow rests outside our studio space: The Anarcha Project: Black Culture/ Disability Culture (2007), Touching Time (2008), Eco-Performance (2009), and Somatics, Movement and Writing (2011). Much of what has nourished me over the years of my critical and creative practice has its origin in these old and new meetings. To follow closely the twists and turns of these areas of academic labor, practice-as-research, performative or fictocritical writing, leads to an institutional history: a fruitful and interesting undertaking, but not one I am setting out to do here.12 I am highlighting some of these spatial and temporal connections, from Wales to Michigan, in order to show a different facet of the shape of this book: this is not only a book about disability culture, about cultures of disability, about culture-ing, about getting out from under disability definitions and models and finding other ways of generating and transmitting knowledge, but also a book about critical alternative practices and community performance, and the meeting places of art, criticism, and politics. A meeting place: this book is a love letter to the dancers out there, and the poets, to performance studies scholars and practitioners, to my teachers and wayfarers, and to readers who move with texts.13 This book desires to engage readers who wish to read genre-confused writing (again), to read about the emergent field of disability art, written by someone who sees herself as straddling the gap between criticism and art production, and who dances in translations.

Traditions Back to the Axis workshop. At the periphery of my vision, and available to me as a soundtrack to my own movement, is an arcing movement, a smooth low-squeal slide of wheels, accentuated by sharp turns, by the metallic clang of a wheelchair’s front wheel handled to maneuver tight spaces. This familiar presence is Rodney Bell (from the tribe Ngati Maniapoto, from the landmass Te Ika a Maui – parts of his name that

Introduction 13

would be traditional to add in his first cultural context). He is an Axis company dancer and workshop co-leader who joined the Oaklandbased company from New Zealand/Aotearoa, where he used to dance with Touch Compass Company, a physically integrated group based in Auckland. He is a manual wheelchair user, a man who moves with expansive gestures, wide circles, whose upper body is often in sway, reaching out and filling space with his presence. At the beginning of the workshop, he leads the warm-up. He begins by asking us to pay respect to the earth, to draw energy up from it. His _ low voice with his te reo (Maori language) inflection speaks English in a soft staccato, which gives texture to the words he uses. Rodney also leads the cool-downs. He asks us to form a circle at the end of each session, where we once again honor the earth, the space, teachers in our lives, and each other. Devotional practice, heart practice, energy work: there are many words I could use to describe what I experience when in Rodney’s circle, and I am trying to be careful. He draws upon something that is powerful, and which is, in that powerfulness, closed to me. It seems as natural as breath to him, and strange to me, but it does not jar me, or offend my atheist sensibilities. I look forward to his calling upon our powers, and linking them with other powers, not because I long for a spiritual or ritual practice, but because Rodney’s clearly available alternative worldview and body practice reminds me that multiple cultures, in their enriching multiplicity, are in the room. There is not only one disability culture in the room, a term that might not even make sense to some of the disabled people assembled, but also other national and ritual ways of being in the world, shaped by different heritages.14 Amongst us in the workshop is a woman who has recently arrived from Australia (she worked with Restless Dance in Adelaide, a company Neil and I recently visited, too). Her presence reminds me that our circles in disability culture can be quite close-knit, and even while many disability activists urge more heterogeneity in US developments, different localized cultures are crystallizing globally, productively upsetting notions of a shared – or globalized – international movement. But diversity of participants is one thing, diversity of techniques another. Beyond Rodney’s rituals, indigenous traditions find little specific expression in the dance material or bodily behaviors of the people who begin to dance together in the Axis workshop. The techniques are not marked, and tend to be subsumed under a ‘modernist’ vocabulary that is not explicitly marked by its own historical and geographic location. I recognize the concerns of the workshops, Shape, Rhythm,

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Effort, as languages derived from Rudolf von Laban, an Austrian early twentieth-century dance innovator. Rodney’s intertwining of his cultural, location-specific heritage with dance can help us be attuned to the fact that ‘neutral’ bodily behavior does not exist, that all behavior follows cultural rules, even if these rules are invisibilized. The supposedly neutral marks become experiential, and visible, in ruptures. In one of my Olimpias workshops, a young Irish woman declined to engage in an instruction that had its roots in Hatha Yoga. She felt that engaging in this bodily work, even without mantras or a spiritual framing, clashed with her personal belief and comportment. Her intervention led to an interesting discussion of the origins of the training methods used in dance sessions, and of the specificity of technique. In the chapters in this book, I mark cultural practices in their clash with other cultural knowledges. I point out (some) non-disabled expectations of comportment, locomotion, and time management, for instance, and their torsion in (some) disability culture practices. Writing from a specifically marked, non-neutral place, I hope to call disability cultures into being by drawing them to the level of consciousness, and by presenting them not only in content, but also in formal elements of my writing.

Sins Invalid I saw Rodney perform in 2008 as part of Sins Invalid, hanging on a trapeze suspended above the stage. The Brava Theater in San Francisco’s Mission District was filled to maximum capacity with excited people. From conversations, I gleaned that many were there to support their LGBTQI (Lesbian, Gay, Bisexual, Transgender, Queer, Questioning and Intersex) community, many to cheer on their Latina fellows, the Filipina performing on stage, their fellow African-American social justice workers, their crip friends, their comrades from feminist struggles. I felt that a lot of audiences came as visible and tactile representatives of their political allegiances. This was not (only) a normal art crowd, although plenty of fellow artists filled the theatre, all waiting to see, hear, support, and be with the Sins Invalid performers. Sins Invalid’s self description centralizes this intersected political framing: ‘Sins Invalid is a performance project on disability and sexuality that incubates and celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists as communities who have been historically marginalized from social discourse’ (www.sinsinvalid.org, last accessed March 2011).

Introduction 15

In my wheelchair, I sat wheel to wheel with many other people who rarely find themselves in the company of so many others who move through the world in similar ways: that alone was an exhilarating experience. The air was electric with expectation and with the gladness of being in presence with one another. Sins Invalid shows are parties, community celebrations. When the performers took the stage, the audiences seemed riveted, moved, delighted, supportive, and open. I spoke with many audience members afterwards to hear their thoughts – but this information, this knowledge of their communal state (which might of course differ in each individual instance) arrived with me, sitting in the first row, as a wave of affect projected from the auditorium towards the stage. To my embodied witnessing as part of a crowd, the whole event became a celebration of community, channeled and challenged through art practice. The performances of the Sins Invalid crew bring together people who use storytelling, song, and theatre to speak about sensuality and sexuality issues that are under-represented, invalidated, in other venues. This is not an easy celebration of ‘outsiderdom,’ or an evocation of an apolitical utopia. Some of the work presented to us each year is hard stuff, hard won material that is brought out from the depths of people’s life experiences, political activism, and aesthetic protest. Sexuality is an area of oppression for many disabled people, and the groundbreaking book by Tom Shakespeare, Kath Gillespie-Sells and Dominic Davies, The Sexual Politics of Disability: Untold Desires (1996) speaks about a creativity that holds against a repressive culture. As Shakespeare affirms again (2000), the sexual lives of disabled people offer insights into the potential for diversity and experimentation at a site that is associated with the emergence of personhood and identity. Sex-positive social justice cultural workers’ charge is to activate this site as a place of productive envisioning, rather than (merely) transgression of normative rules. Sins Invalid embrace this labor. There are moments of great tenderness, when a boi caresses the naked shoulder of a male dancer and makes electricity in the sensuous touch of skin on skin. There are moments of hilarious fun, tears, and laughter in the face of oppression when we hear of the abject self-denial and loathing a performer has experienced and now processes through art practice, reaching towards self-acceptance. I am not always comfortable and happy at the Sins Invalid show, though. Some of the scenes seem to me a bit too insistent on sexual attraction as a political act. When, in one scene, a woman tries to seduce a Catholic priest over dinner with conventional and heavy come-hither

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banter, I feel less in the presence of transgression and more in the realm of psychodrama, a personal dramatic catharsis effected through the playing out of desires. At those times in the show, the sexualities imagined on stage seemed to me bound by an abjection/defiance paradigm that has deep roots in the sexual oppression of disabled people. The depth of an imaginary that goes beyond hetero-normative framings or nuclear romantic ideals is emerging, but remains tense and only experiential in glimpses. What are the alternative erotic economies of disabled people? How are these economies of desire experientially and historically grounded? The Sins Invalid performances demand to be honored for what they are, spoken and moved from a place that denies oppression’s grip. There’s a culture clash in me, when I see these different value schemes, different evaluative criteria for the performance work I am writing about in this introduction. On the one hand, there is the Sins Invalid party. On the other, there is Axis, a contemporary dance company, that, while disability-led, works within that idiom with non-disabled wellknown choreographers.15 With Axis, I expect to see physical artistry and power, precision and articulation, but not necessarily a transgression of what ‘power’ means in a dance context. Dance critics can safely write about their work in relatively familiar terms. Sins Invalid works with a grassroots aesthetics that is based in effective storytelling strategies. Aesthetic evaluation and critical discourse seem to me much less developed in that area of art/life practice, critics have much less background to connect to. As a critic, I have to be careful to mark which evaluative criteria I am using, and why. There’s a tension for me in the radical reimagining of sexual economies on the one hand, and the play of desires and the aesthetics of individual storytelling on the other. Can sexual economies be newly thought from an undeconstructed ‘I’? If I were to bring European thinkers like Luce Irigaray into this discussion, and mark a history of breaking open language to dislocate desire, would that be an oppressive move? Does theory, be it Gloria Anzaldúa or Frantz Fanon, have a place in the scene of storytelling? I feel power leak away when storytelling tells a self ‘straight out,’ does not question how selves come to be, how our culture(s) conceive individuality, sensuality, contact. And yet, there is strong presence and power in testifying, naming oppression’s work on one’s own life and experience, and finding solidarity in the audience. My own work within the Olimpias focuses on fractured storytelling and experimental community art, on veiling, on silences and secrets, but many Olimpias actions are small, and have less impact on the wider

Introduction 17

cultural world. These themes, storytelling versus story-breaking, will emerge in many different constellations throughout this book. The diversity of our aesthetic political critique is a necessary and important part of disability culture’s self-imaging. We need multiple different access points, some based in traditional aesthetics, some in personal empowerment, some in formal intervention, some in ritual practice. For many disabled performers, critical positions are not easily attainable. Not only is education and practice beset with barriers, but our differences themselves might lead us to reject conventional art practice, certain kinds of irony, and the aesthetic demands of the art market. This is an important point for the project of this book. One way of telling the story of the ADA (American with Disabilities Act) and other policies focuses on how their imagination is grounded in a principle of assimilation, post-adaptation: when all buildings have ramps, when all work spaces have safe rooms, when all elevators talk, disability will disappear. It’s this rhetorically heightened straightness that provides much discussion room for the ‘real’ of disability. It is important to mark that disability culture hosts a much more varied spectrum of attitudes to ‘the mainstream,’ to reasonable accommodation, to difference and its potential to reshape the world. Some disabled people aspire to a liberal ideal of equality for all, a subsumption into a society that makes space for them. Once accommodated and in ownership of full citizenship rights, they are free to live ‘ordinary’ lives. But some disabled people have (or have to have) a radical understanding of disability culture, as a segregated/separated entity that either rejects or enhances the ‘ordinary.’ Many experience their different bodies, minds, and bodyminds as radically separate from others, radically in disjuncture with the demands on empowered individualism, radically out of step with many of the ways that contemporary culture(s) have shaped themselves. And this difference is not only experientially available, but has histories, was institutionalized, marked by labels, and physically segregated. A call for social justice rather than rights offers a perspective that does not begin at non-disabled embodiment to move outward from this position of relative privilege. Instead, forms of privilege are monitored, called out and addressed as they come into experience, and the desire is to craft a world in which all aim to be aware at all times of the histories, practices, and imaginations that have shaped it, and all participate and collaborate in addressing exclusion.16 ‘Disability justice’ is an emerging concept, with particular currency amongst disability activists of color,

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who find themselves alienated by the dominant whiteness and exclusionary practices of the disability civil rights movement.17 Most members of disability culture live in definitional hybridity and hold multiple perspectives on segregation and inclusion, on radical assertion of difference as positive value versus the need to catch an accessible bus. Many disabled people can shift perspectives appropriate to a time and place, and are experienced in living different roles. Living disability culture means code-switching, complex maneuvers that allow me to read Axis performances, with their allegiance to contemporary dance aesthetics, in one way, Sins Invalid and their grassroots-informed witnessing aesthetic in another, Olimpias experiments in yet another, and enjoy, be challenged, and be moved by them all. I can’t know, but I imagine that to some people in the audience for Sins Invalid that night, what becomes available is an opening into a different world. In that theatre, that night, performers and audiences rehearsed what it can mean to be present to one another, to be respectful and loving, to see our fierce beauty, and to stand and sit and roll together. I felt honored to be part of the circle. And the circle has history, and is not only instantiated in this one event. In one of the numbers, Seeley Quest uses hir rhythmic, sophisticated gliding spoken-word performance to explore an erotic fantasy of an encounter with a guy at a recent gallery event. Seeley’s presentation is gender-queer, and I read hir as a strong vulnerable post-dyke, working in the performance lineage of a swaggering drag king. When I asked hir about hir preferred self-identification in this scene, sie offered me this language: ‘sie sharply performs the hotness of teasing all the audience from the edge-space of androgyny.’ Hir hands are mobile and draw like snakes around hir as sie tells hir story. Quest draws upon multiple registers to queer hir desire for this man focused on the seductive erotic potential of chocolate, melting in the double-talk flirt that emerges between hir and hir conversation partner. The text lives in its delivery, in the rhythms Seeley strokes across hir skin. But even in this flattened, textual shadow, it has life, and showcases an erotics of difference that is not reducible to simple oppositions. This text here is provided by Seeley, as a performance script rather than a textual entity. he has short arms you know, the kind you get if your parent was exposed to certain drugs

Introduction 19

or other factors that mutate development. He has short arms, but regularly wields his razor to keep a close shave, because it seems easier to introduce himself with a European kiss on the cheek than handshake. I can tell he likes his jawline to stay as kempt and smooth as possible, ’cause he’s got a lot of people to meet and kiss and charm. He’s also game to charm by feeding people chocolate, being fed chocolate, and by licking chocolate off of others too. He shares this after a girl says I just fed her from my piece of chocolate torte. He adds yes, he wants some also, and then I get his mouth deliberately closed around my two fingers to caress the bite from them with his tongue, an approach I hardly get every day. He thanks me and moves off in the crowd, while I marvel at how supple his lips feel. He has short arms, and perhaps his legs wouldn’t seem so long otherwise, but with his height and peculiar grace there’s a beautiful long movement as he suddenly steps down next to me upon returning and saying yes, he’d like more but thinks he needs to be kneeling for it. I can tell he’s not all about chiseled bravado when this time he lets me play with him at my pace, lets me first brush against the surprising softness of the skin around the lower edges of his face, asking, ‘how badly do you want it?’ before finally pushing the smear past his teeth. He worships the texture of my fingertips as much as the torte, savors sucking them even more thoroughly now, and after he rises and disappears again, I wonder if he likes his fingers licked as much as I do; are his upper appendages sensitive differently from his lower ones? They are placed perfectly to stroke his own chest or another’s; he barely has to stretch one arm to mouth his fingertip wet and then circle that pleasure upon his nipple.

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Economy of size yields economy of movement-I like the languidness of his hands reaching above his shoulders, and returning to tickle at rib level, where they belong. He has short arms, which fit just right, when I imagine him folding at the waist and knees to place his head at my legs’ juncture. I can tell how sweetly his hands frame his face, how suited they are to press apart thighs, how neither of us would be distracted by an excess of gangly limbs from the focus of his elbows angled precisely in to pull hidden skin taut for discovery. He has short arms, so he’s trained his full lips to do some things in their stead, like grasp the cap of a thing that needs a screwing motion to open it up; he need apply no wrist when he can just circle it with his mouth’s hold until it comes completely undone. He is also accomplished with his feet; he uses one to wash his ass. Upon learning this, first I think, ‘What else can he do with his feet??’ Next I think, ‘What else does he do with his ass??’ I think of when he first knelt to me, how I said, ‘You know I’m also a pro-dom,’ and how instead of, ‘Why am I not surprised,’ what if he said, ‘You think I’m surprised?’ And then I could’ve shown restraint by simply saying, ‘Cheeky,’ while lightly scratching my nails across the side of his face before letting him suck them inside. I can tell if I managed to draw him off from the crowd to dally somewhere less public, when he leaned by a wall I could pin his arms at the shoulders to hold him there; though he quite outsizes me what if he accepted it, my pressing in to have my way where I want? He has short arms, which remind me of my one high schoolmate with not much dangling for his, the one who was my English teacher’s son and therefore felt off-limits, but who was beautiful and the most streamlined runner on the track team, someone I saw cutting through air for hours.

Introduction 21

Queer lovers of mine with straight spines have said they love my back’s asymmetry, its sinuous twisting, and I can tell he knows how it feels to be a freak in one’s bones, the way others don’t. So little is off-limits now; I hardly want to wash my fingers that held his chocolate, knowing that later I’ll roam more of my body with them. I can tell he knows it too, as upon parting for the night, hugging me close with short arms, his last murmured words are, ‘When you get off, think of me.’ (Quest, 2008) As sie teases above hir crotch and cups it, replays hir arousal for us in driving poetry, I am aware, as many of the audience are, of the object of desire, not actually named here: Mat Fraser. Mat is a well-known international performer and a class act on the disability arts circuit, moving from festival to festival (such as the Extravagant Bodies Festival, Zagreb 2007, the Edinburgh Festival, UK 2007, the Society for Disability Studies annual conference, NYC, US 2008, London Burlesque Fest, UK 2009). His performance marries crip style to sex, the swish double-entendre of the music hall caller to the freak tactics of his first stage persona as rock god (Kuppers, 2002). I enjoy finding him here in reference, in the background, not (only) because I am hip enough to get the reference, and certainly not because this speaks to a certain homogenization of disability culture. I enjoy it because these quotations give history to this work here: this is not alone, this is not in free-flow by itself.18 There is a larger culture/cultures that can be referenced, made fun of, get horny about, remember, be nostalgic with, or project into the future. We do have disability culture stars, we do have recognizable genres such as the show host patter, the freak sex scene, the ‘I am (crip) woman, hear me roar’ scene, the cripple child in front of doctors who takes back power scene, the telethon scene, the intersecting oppression scene, the superman joke, the drag/passing scene, the Helen Keller scene. Some of us can smile and nod as we ‘get it,’ and some of us can be gleefully looking forward to the treat that is in store when we first see or hear Mat Frazer, Liz Carr, Greg Walloch, Lynn Manning, Johnny Crescendo, Eli Clare, Julie McNamara, when we scream out for them and the other stars in our particular firmament, the particular three-ring circus of the ‘international scene’ part of the crip art world. At the end of the show, Rodney swings upside-down against a carefully lit background. His wheelchair, strapped onto his body, glitters in

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Figure 1 Rodney Bell, in Sins Invalid performance, 2008 (Photographer: Richard Downing, provided courtesy of Sins Invalid)

the spotlight. He circles, his strong hands grasping the rope, and we see his own fierce beauty. Throughout the show, we could admire his muscularity and dexterity, his articulated dance movement. Now, he is _ in facial make-up, and has put warrior tattoo lines on his Maori face, honoring his ancestry. Suspended, he engages in haka moves: he dances _ a Maori war dance, his tongue out, fierce and strong, challenging us, and thereby honoring us as fellow warriors. Different ethnic and racialized backgrounds are marked and referenced in Sins Invalid shows. One of the performers uses strong Catholic imagery grounded in her Latina identification, sexualizing Mother Mary, and playing with the taboos of priests and sex. Patty Berne’s performance poetry contains references to the ‘feeble-minded,’ a Eugenicist term that addressed amongst its fluid definitions what was called miscegenation in racist discourse, and which many disability rights trained spectators can link to African-American issues as well as to issues of developmental disability. In one of the videos he plays at Sins Invalid events, Leroy Moore has this line of poetry: ‘my sperm gave birth to the eugenics movement.’ There are many pasts here, many diasporas, many homelands, many histories, many roles. Rodney’s piece is the main scene, though, that references traditional performance practices as a source of pride, and as a positive affirmation

Introduction 23

of identitarian difference, rather than as something to be stemmed against or questioned.19 I am interested in these different inflections of disability in languages other than my own, other performance traditions than those I participated in as a Catholic-raised child who helped build altars on street corners for annual processions, and engaged in rituals that my adult anthropology-trained self can see as pre-Christian European pagan fertility rites. Disability culture is no monoculture: different ethnic, religious, ritual, and representational perspectives impact Anglo-American, predominantly protestant perspectives. In this book, different African and _ African-American perspectives, Jewish perspectives, South Asian, Maori _ _ and Pakeha, German and British and Welsh perspectives shape art practices, many in tensions with different cultural ideas of ‘normality,’ and rife with exclusions and oppressor/oppressed histories, as well as opportunities for new engagements, new stories, new myths, new beginnings.

Cripple Culture. New definitions, new inflections. No longer just ‘cripple.’ Now also ‘CRIPPLE’ and, yes, just ‘cripple.’ A body happening. But on a real good day, why not C*R*I*P*P*L*E; a body, hap-pen-ing. (Dig it or not). Cheryl Marie Wade: Disability Culture Rap, 1992. One of the ways to mark the shift of the signifier over its ground, the non-fit of language and lived reality, is to mark the play we can engage in with words, within and across languages. One such word is ‘cripple.’ I have chosen to use this word in this book not only because of its strong emotional impact, but also because of the way the word has history, within and without the English language, because of the resonances and vibrations that surround it when spoken slowly, rippled across a tongue. Cripple: that’s what I am talking about. I mark the cultural specificity of the ways we culturally engage with unusual forms of embodiment, sensorial difference, cognitive difference, and emotional difference. Disability, impairment, handicapped, ‘incapacitados’: these are the words used in legal discourse, in our touches with the institutional world. We fight for the right word, for our own claim (in the United States, to ‘disability’). But this is a book about art practice, and there, many disabled people I know like to feel a bit more lift under their wings. Try to write a poem with ‘people first’ language: ‘people with

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disabilities.’ That’s quite a mouthful. So in our own shorthand, artists often use different terms. Some of these are terms with a longer history and a richer resonance than those used in our legal and civil rights struggles, our encounters with the bureaucracies, and the march through the institutions.20 In 2008, Neil and I released a book of poetry, a record of our courtship correspondence, edited to speak to issues of disability language, pain, performance, love, and an ardent belief in this fierce beauty I keep mentioning, this beauty we both see in our disability community, in our queer communities, in our comrades in other minoritarian identity and justice struggles. Much of the poetry book was organized around the word ‘cripple.’ The opening poem, written by Neil, addresses the weight of this word, and the strategies open to the poet to both lighten and deepen it, make it a seed in a plowed ground, set it free on winds, revalue trash into flying objects, enmesh it into the metaphors with which we nourish ourselves. In this next section, this poem is put into conversational play, as we enact a conversation, as we begin to destabilize authorship (like my sole authorship of this book that bears my name). The section below is not properly any one author’s, is not easily reference-able, either: it first appeared in a small chapbook put out by the Inglis Workshop, a Philadelphia-based collective of disabled poets affiliated with a residential institution. It then was reprinted in our poetry collection, constituting a section by itself, but in dialogue with the material before and after it in the collection. It changed again, slightly, after a blog conversation with Eli Clare and Leslie FreemanDykesen about the complexity of comparing and equating race and disability. Much of the work I am discussing in this book has gone through various metamorphoses before it hit ‘the art world’: much first appeared in a very local context. Cripple Poetry: Wind, Sticks, Stones and Earth: A Conversational Essay by Petra Kuppers and Neil Marcus The Metaphor of Wind in Cripple Poetics By Neil Marcus How can I speak of cripple and not mention the wind. How can I speak of crippled and not mention the heart. Heart, wind, song, flower, space, time, love. To leave these absent is to leave cripple in stark terms. As if we were made of medical parts and not flesh and bone.

Introduction 25

There is always wind in my cripple Off shore breezes. Scented nightflowering vines. Wild salsa dances that run past midnight Cripple is not extraordinary or ordinary. Cripple is a full plate A blown about newspaper An ox in a rice field, ploughing earth Petra writes: I love this poem, and what you tease out of this word that so many crip culture poets are fascinated by: ‘cripple’ is so much richer than ‘disabled’ as a sound, as an image, bound to a longer heritage. Rippling wind waves on oceans, earth furrows, the zen movement of sand and rice patterns, a chair’s mark on the ground: the sensuality of the word and your world merge as I mouth the words. Rejected trash becomes an object of beauty, moving in its own gravity. You told me that you wrote this poem in response to one of mine that you liked, Crip Language, a poem I wrote a while back. In it, cripple has a very different, harsher vocabulary. Neil writes: yes, it is clear in your poem below that the word cripple is not a ‘hip’ word. It is ancient and is born of cruelty and violence. there is no illusion that it is ‘cool.’ That’s the reality, lest we forget. You remind us of it here. There is another reality that needs expression that comes from our resistance to the stereotype and its pain. It's a delicate balance. Both sides needing acknowledgement; the wind and the kruppel/gruppen. Crip Language By Petra Kuppers Krüppel Cripple Fickle Tickle playground ground go round again last out on the line Cripple Fucking Krüppel Mädchen tickle fickle root Krücke Crutch Crotch kicked away blow me one, here, gut fuck off fick Dich Selbst Cripple Ripple Cripple Ripple stick that stick across your feet

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Disability Culture and Community Performance

fall on down fall on down that stick is harder than your bone Petra writes: we find what we need in the words we call our own: anger and tenderness, affirmation and defense. The crip and its painful history: in my poem, I remember sexual violence, and the use of the word ‘crip’ in gang contexts. I find it deeply satisfying to read my poem out loud, to use its rhythms like a shield, like a ritual, but the poem also holds for me memories of isolation. My two languages come together and clash, rhyme and diverge. I claim space with my breath. Neil writes: I don’t use the word crip to describe myself. I don’t wish to take on its painful history. I love the way you face head on the utter darkness and despair surrounding our history. You name it then I feel we are all free to move on. ‘that stick’ that once was so punishing comes creatively alive in a new narrative… To put ‘wind’ in ‘crip’ when you call us crips I cant see or feel your ‘wink’ when you refer to me as a vegetable or im vegetative i feel more at ease is there any humor in crip maybe wry crips is our history similarly known to ourselves or the public as african americans is known or unknown or unknowable not yet then why do we borrow a nigger equivalent -is it?- use of oppressive term for ownership of power this is my poorly developed opening discussion even tho im no nitwit -not without witneil ;-) And Petra replies:

Introduction 27

As always, you catch me off-step: do I reply to this as a poem, refer to the way it dances across the screen, or as an argument, a statement in a different form? Both, of course, but the dual shape captures me. In terms of word sound, I personally do not like crip – I like cripple, rippling across my tongue, little explosions, waves in my mouth. Liquid, and reminding me of Krüppel, my German word, that from early on in the German movement was used as a word of coming together, in Krüppel gruppen (cripple groups). Krüppel is also close to a German word for stick: Knüppel, something to beat with. There’s an anger in the word, and its echoes. I am not sure the English crip has the same richness there, at least not for me: it’s too short, too hip. But you rightly point to wry crips (a Berkeley-based women’s performance group): as soon as there’s a history to a word, a chain of associations, we can love it? But is there not humor in ‘crip’? I like it because it has multi-national meaning: an Australian comic artist uses the label, people all over the globe use it, and there’s an upbeatness in it, the ‘crip, crip, crip,’ like an insistent melody. It is a counterword, a reclamation of the master’s language, I agree, and holds the violences of the master (world) firmly in its sound. Is that a bad thing? I am not sure… I like your reference to the unknown nature of our history, and how, therefore, it is harder to have the oppositional tones in the word. Good point: but then, if we do not use a provisional word that speaks harder than ‘disabled people,’ how will we ever open up the silences in our history? Provisional word: that seems to me important in any discussion of ‘crip.’ It will serve us, for a while, as so many people are only slowly coming to a political and artistic understanding of what it means to lead a rich disabled life. Neil answers: i learned recently that i dont like it said of me that i have dystonia however to say i am dystonic

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Disability Culture and Community Performance

is ok i feel too that i am not a crip thats not who i am i like this word Kruppelgruppen perhaps creeper too behindenmensch no shapeshifter yes trickster ok artist ok mortal YES foil of the goddess and god realm neural collective on earth Petra writes: Storms and breezes, wind and blows – I note that your last word is ‘earth,’ which brings me back to your opening poem, and the ploughed earth. We have to labor to earn our words, to make our world. Poetry allows us to explore cripple life in its many nuances, and we can hold up different angles of our languages’ crystals. Through the prisms of our languages, our experiences, our senses, we can see a cripple poetics. The poems in our book went on journeys, and encountered many readers, passed through the mouths of people with different language traditions, and sometimes, gifts came back to us. Here is a translation of the opening poem, by an old friend of Neil’s, Francisca Miranda Schneider, a Spanish teacher. La Metáfora del Viento en la Poesía de los Tullidos En Busca de un Beso Por Neil Marcus Cómo puedo hablar de estar tullido sin mencionar el viento. Cómo puedo explicar estar lisiado y no mencionar mi corazón. El corazón, el viento, una canción, una flor, el espacio, el tiempo, el amor. No mencionarlos es explicar al tullido como un texto de medicina en vez de Alguien de carne y hueso. …

Introduction 29

To read this poem, or to hear it performed by a Native Spanish speaker is a thrilling experience where poetry meets itself, where the form of words, not only their meaning, steps forward. The words flow from lips in a different, contrapuntal rhythm to Neil’s original poem, which is itself carved out of and revitalizes many older traditions (of love, and wind, and heart poetry). There’s a strong wind here. In the context of this introduction, though, I wish to point to the translator’s choice for cripple: ‘tullido.’ This Spanish word captures something of the poetic richness of our cripple, but gives it a different flavor. Tullido can also refer to over-ripe fruit, to bruised fruit: spoilt, spilt juices. When Francisca explained this to us as one (of many) potential way of referring more allusively, more poetically, to what we term ‘disabled people,’ we remembered the over-sweetness of persimmon on the edge of spoiling, and the many English-language references to forbidden fruit, to sexuality, to a different kind of ripeness. This attention to the meaning of words, and to the different valences of ‘cripple’ will ripple through this book. The chapters in this book twist around each other. Work about other artists’ practice flows into discussions of my dramaturgical process, different voices appear and challenge my single authorship, fully in keeping with interdependency as a desirable, fully acknowledged aspect of disability culture. My work as artist and critic depends on others: I work collaboratively. The parts of this book create constellations. They bundle the light of different stars, coming together in the eye of the beholder.21 Part 1 is organized around the idea of space, habitation, making a home where there isn’t one, how we colonize/habituate ourselves to a place, how we translate myth into life, languages into each other, self into community. I approach this theme from three perspectives. First, through a production that inserted disabled bodies in spaces not designed for them (in a London dance performance). This is followed by a discussion of the ways that lives narrate themselves in the postcolonial environment of Aotearoa/New Zealand, and on the cusp of moving to a very new country: that new shore Shakespeare called death. The last chapter in Part 1 looks in detail at a Welsh performance series created with people with mental health difference, and I am exploring the concept of community through Jean Luc Nancy’s work. In this section, I also discuss structures of feeling, and Williamsian approaches to the study of culture, to see how artful practices engage the energies of communities.

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The second section, Part 2, is organized around words, such as the connects and disconnects between the lived experience of disability and the word disability. This is what happens in this writing: it inserts a slanting perspective into the methodological toolbox, and a historicizing longitude, lights from older stars and black holes. I look to poetic practice to help me experience and elucidate the gaps and opportunities around disability, disability culture, and other heavily weighted words that create gravitational fields: cancer, blindness, cripple, madness. This section also introduces different kinds of critical genres in play with one another: theoretical, footnoted essays, and intersected writing, respectively. Chapter 4 is a call for a Deleuzoguattarian rhizomatic model of disability, and it is in constructive tension with an essay group that meditates on the solo and the group, with a group montage created out of wiki posts by Olimpias participants. I have chosen this format to share what the Olimpias are, how fragmented, unclear, and veiled our experiments can be. Members (and audiences, the boundary fluid and open) drop in and out, participants find their own place within the process. Durational labor means that boredom and surprising connections emerge side by side. There’s drift and tension, but something moves. In the Burning project at the heart of these two chapters, an emphasis on energy transfer, on energetic exchange, creates a glimpse of a political project that helps to articulate the project of the rhizomatic model of disability. Part 3 deals with time and touch, themes that echo through the Anarcha and Tiresias (Part 4) sections of this book: willful histories, impossible mourning, backward glances that do not revictimize past people, or create new hagiographies, saints’ stories, out of disabled lives lived under restrictive regimes. The Anarcha sections in Chapter 6 are experiments in collaborative storytelling at the site of slavery medicine, finding echoes of medical gynecological experimentation on slave women in contemporary health care inequalities. Tiresias (Chapters 7–9) focused on collaborative myth-making, on revealing and veiling, on the intersection of photography, performance, myth, and life. Languages and bodies as processes and containers, translations and transformations: these are the registers of our culture-ing. These writings are part of the art practice they are witnessing, describing, or extending. In important ways, these written traces are the main audiencing procedure of Olimpias experiments, which are often strange, strangely shaped, twisted, in its performance instantiation. In the Olimpias performance work, the focus of the labor is on the artists’ processes, on what blooms up, often unexpected, in the space that we

Introduction 31

hold open. The audiences are part of the process, are invited into the circle, and are invited to go on thought-journeys and body-journeys with us, but our focus does not tend to be on shaping a successful stage encounter, conventionally understood. These writings here extend these politics, and are shaped with their focus on an active reader, a writerly reader. I hope they continue their performance labor. *

*

*

In the Axis workshop, the moment of stasis has passed. Twisted and strange, OK, I can do that. I translate the instructions into my own limbs, find twists that do feel strange, that stretch my bodily imaginary, that lead out of the comfort zone of my personal dancerly base-line. The category confusion passes. What I heard a moment ago as a comment on an external perspective on bodies becomes a simple movement exercise. My lower body contracts while my arms reach out wide, and I use the momentum of the movement to slide into a new position on the floor, thigh shuffling backwards, a new anchor point from which to launch out. Back in the flow of dance intelligence, my thoughts become absorbed into the patterns of crossing limbs, arching back, my head weaving through my arms, my attention wide to feel the movement patterns of the others who inhabit this space with me. The woman with the broken hand is moving in her own way, and I can feel her glide in the depth of the room. Rodney twists his lower body away from his hands, and his wheelchair tilts sideways, he hangs in a balance. Neil watches us while at rest. I move into the dance.

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Part 1 Making a Home

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1 Landscaping: Spacings

If I go to the theatre now, it must be a political gesture, with a view to changing, with the help of other women, its means of production and expression. It is high time that women gave back to the theatre its fortunate position, its raison-d’être and what makes it different – the fact that there it is possible to get across the living, breathing, speaking body …. (Hélèn Cixous, 1984) This chapter delineates a journey into performance undertaken in the spirit of Cixous’s exhortation: a movement embarked upon out of a desire to create change, to transform a space in the everyday life world, and to change that space’s mode of meaning production. Three performers went about creating a home for people who do not fit into a space, and do not fit together. The practices under discussion in this chapter attempt to make performance relevant to the architectures and practices of our lives by bringing the living body into focus: the living body, alive and making work in a cold damp place. In this Olimpias research practice, a group of performers rubbed up both physically and metaphorically against an inhospitable corridor, an insurmountable staircase, in order to view the effects of spatial arrangements on our bodies and imaginations. In April 2001, members of The Olimpias performance projects, disabled performance artist Kanta KochharLindgren, geographer Derek McCormack and I, worked in a residency at the Chisenhale Dance Space in London. We were interested in alternative access and space’s imprint on bodies and communication practices. This chapter addresses the dramaturgical concerns and questions, processes and encounters that shaped this performance/installation. 35

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Making a Home

In this chapter, I illuminate core concerns of performance practice, articulated through collaborative endeavor: the use of space in the field of meaning, and the relationships between image, word, and lived experience. These concerns emerge in a container, a narrow space, which just about allowed us practice and writing: we three Chisenhale researchers started by reading material on public art and site-specificity,1 and then met in the research residency, in a corridor, to work on themes physically, without director or script. I write this chapter as one of the three residency participants, providing one view of the personal spaces and private languages that collided and chaffed in the stairwell of the Chisenhale. Derek has also written about the project in essays in Society and Space (2005) and Cultural Geographies (2004), the later an essay that is often cited in studies about affect and embodiment, amongst cultural geography researchers. These writings extend our performance by letting the textual, the physical, and the personal collide and weave in a different format. Performance is a spatial art form. It is not only durational – specific to its temporal interval, the meeting of spectator and performer – but also specific to its location, and in its use of that location, its meanings, stories, maps, and networks. This space of performance is not neutral: not only does performance imbue a space with new meanings and create new contracts, but performance also works within the existing contracts that govern any given space prior to its colonization by the performer. Site-specific work has long been aware of this re-coding of spaces, and of the sensibilities involved in taking performance out of the traditional Western performance or gallery spaces. A web of connotation, preferred uses, pathways, and relationships characterize theatres, castles, hospitals, airports, offices, and residential units. An architectural archeologist can trace hierarchies, gender meanings, and other stratifications in everyday-life in the physical arrangements, the architecture of twelfth-century monasteries and nunneries (Gilchrist, 1994), in the private shells of the home, excavating a spatial poetics of intimacy (Bachelard, 1994/1958), and in the relations between concrete and humanity in hotels (Jameson, 1988). Performances spaces carry meaning not only in their architectural physicality, but, like galleries and museums, also carry meaning in the practices associated with their everyday maintenance, such as their position in the city/rural environment, the networks of streets, of corridors, of restroom arrangements, of bus stops and parking facilities. ‘Art’ is created in the nexus of physicality, practice, institution, and

Landscaping: Spacings 37

ideology: a work of art is not only shaped individually by the space in which it is shown, but also the conditions of what counts as ‘art’ are encoded in the environment. The blueprinting of behavior and values through environmental practices is particularly noticeable in ‘service’ areas of buildings: the secondary spaces that provide access to primary spaces. Thus, the corridors of a hospital – often cluttered, with colored markings on the floor to facilitate orientation and flow, scattered with closed doors hiding treatment rooms – tell the observer about the segregation of patient and professional. The differences between front and back stairs in Victorian houses relate important information about flow, meeting spaces, and class arrangements. Service areas tell about exclusions (long drive-ways to manor houses, excluding the foot passenger in favor of carriages and, today, cars) and preferred stories (theatre corridors, often liberally hung with stills of previous shows, setting a scene of expectation). In Landscaping, our performance experiment, these service areas, these exclusions and stories became the focal point of a performative investigation into communication, flow and personal space, always anchored back in ‘the living, breathing, speaking body.’ In Landscaping, the main text to be read, the main practice to be historically and contextually placed, was the narrow corridor and stairwell of the Chisenhale. The Chisenhale Dance Space has been influential in new dance in Britain: it is an active, artist-run space which allows artists from all over the world to experiment, engage in research processes, and develop new approaches to performance. The Chisenhale has traditionally been inaccessible for wheelchair users: six flights of narrow staircases need to be overcome before one can see a show in the performance spaces or attend a workshop in the studios on the top floor. This stairwell became the focus and location of the residency. Every day, we were working six to nine hours in the relatively cold, damp corridor leading to the first set of stairs. The corridor was narrow (my wheelchair wasn’t able to turn in it), and people using the Chisenhale had to walk through ‘our space’ in order to reach the administrative rooms and the studios. There was no electricity in this hallway – another reduction of performance means. So what did we do? The final performance/installation is not the object of this essay, and the performance as a whole will not be re-erected in these pages. Processes and practices, spatial experiences and communicative acts are at the heart of this discussion of the complex making and unmaking of communality and community.

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Making a Home

Space and meaning One of the challenges of Landscaping was to work in an environment that signified differently for all involved. The corridor moved from an intellectual challenge (an email conversation had started before the residency) to a visceral one. The narrowness of the corridor meant that Kanta, a hearing impaired woman, had to deal with echo and diminished availability of lines of sight during the performance work. No ground level storage, comfortable places, or toilet facilities meant a clear physical challenge to me, as a mobility impaired person, for whom the stairs at the end of the corridor became an open knife, a harrowing reminder of pain. All of us had to deal with the cold and dampness, and the lack of natural light and privacy. The specific blueprinting of the space became clearly visible. Corridors and stairs are a “secondary” space: a space of transition, a directional space. Stairs are not designed as places of location (an exemption are the grand stairs in both manorial halls and in some TV shows, where the hosts greet guests from the elevated position of the stairs, or where people are arranged in lines signifying center and margin – TV show host and dance troupe). To hover in these spaces often signifies hidden activities in TV dramas: a person witnessing a family fight, clutching the railings of the stairs, or people listening at doors in hotel corridors. Stairs can be a place of danger: in The Spiral Staircase and in Vertigo, the stairs reference disability and trauma as transitory life events; in both instances, the disability is ‘cured’ by a repetition of the physical transition. The stairs in these films are rites-de-passage. But for our real-life disabilities, the corridor and stairs provided none of these dramatic stories with their cathartic potential. The walls and steps provided solid, permanent evidence of the marginality of disability in social spaces, and our bodies and senses rubbed raw against the concrete. The stairwell’s trajectory was upward. No matter how we tried to bind the space of the corridor to our bodies, habituated ourselves to the cold tiles, the niches and architectural quirks, the interruptions of people hurrying past us, stepping over us, squeezing themselves past the wheelchair, all this to-ing and fro-ing reinscribed again and again the ephemerality of this space as habitat. The rules were set, as Bachelard explains: A house constitutes a body of images that give mankind proofs or illusions of stability. We are constantly re-imagining its reality: to

Landscaping: Spacings 39

Figure 2 Kanta Kochhar-Lindgren and Derek McCormack in Landscaping, Chisenhale Dance Space

distinguish all these images would be to describe the soul of the house; it would mean developing a veritable psychology of the house. To bring order to these images, I believe that we should consider two principal connecting themes: (1) A house is imagined as a vertical being. It rises upward. It differentiates itself in terms of its verticality. It is one of the appeals to our consciousness of verticality. (1994: 17) In his description of the house from the cellar to the attic, Bachelard interprets the loci of the house, the phenomenological intertwining of spatial orientation and psychological meaning. And this alignment with verticality, the need to go upward, influenced our habitation of the corridor and stairs.

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Making a Home

The uses and rules of the space, the conventions of architectural meaning, imprinted themselves again and again on us: passing bodies sailing past us, activating the flow upwards and downwards. Physically, windy London intruded when we propped open the door to let air in, making us aware of the threshold we were inhabiting, holding on like tenacious barnacles. The hybrid body of cultural images and our lived experience cast us in an alien space. Bachelard continues: (2) A house is imagined as a concentrated being. (1994:17) For instance, in the house itself, in the family sitting room, a dreamer of refuges dreams of a hut, of a nest, or of nooks and corners in which he would like to hide away, like an animal in its hole. In this way, he lives in a region that is beyond human images. (30) In our work in the corridor, we had to stop the flow and rewrite the powerful script of the transitory space. This was necessary not only to allow the representational, cultural level of rules to lose its transparency, to give up its anonymous nature and to show clearly its exclusions. On the level of physical habitation, we had to live there for a week. Thus, we had to find places for living in the corridor, temporary havens from the winds of both convention and of physical phenomena. And like Bachelard’s animal, we made minute spaces into intimate places, a concentrated island where the flow stopped to draw us up or downwards. Working, rehearsing, we all seemed to gravitate to certain points, places that became familiar, uncanny homes. I remember returning again and again to a specific step to sit on,2 and seeing Derek attracted to a specific corner in a shallow depression in the wall, a depression like a blocked out window. In the windy space, a house wouldn’t hold us: three houses were built, instead. As the week progressed, we tested the boundaries between these individual concentrated spaces: we grew testy and cranky not only with physical discomfort, but also with what seemed like a need to defend our shrunken houses, the cocoons we erected for survival. So how to draw out the choreographical implications of these spatial stories that the space drew into us, that we drew into ourselves? How could the flow become visible, how the cocoons? Rudolf von Laban’s space theories were one of the familiar, warming tools we had brought to the residency. By exploring the kinespheres of our cocoons and testing out their boundaries, juxtaposing the different effort qualities of

Landscaping: Spacings 41

our movement in this exploration, we spatialized the effects of space on us, we moved against the corridor’s energetic movement. We planted our bodies with scared geometries, with ancient shapes, with the rituals of repetition we had learned in our dance technique classes. With a piece of string stretched along the length of the corridor, flexible on one end (fastened to the wheelchair that could move to pick up slack), we threw Laban’s crystal spaces into the rushing length of the corridor. Plastic, massive shapes emerged as the string spanned between hands, heads, and feet, disrupted the single line and created complex shapes. Our bodies’ mass, and the edges of these crystals, countered the script of the corridor. But the languages of de Certeau and Bachelard, of Laban and of Deleuze, these texts that we had brought to the exploration process, didn’t necessarily run smoothly into the physical communication between us. The text on the page and the practice in the bones left us with much to discuss: Landscaping allowed fascinating insights into the differences of perception, as our different bodies met physically, emotionally and kinesthetically. The geographer wasn’t always comfortable with the improvisations, and the way in which the dancers’ bodies, more familiar with the language of effort, shape, and pathways, articulated themselves. I felt clearly the conflicting drives in my own soft, big body: my desire to launch myself at the floor and walls, exploring dancerly configurations in the stark geometry, clashed with the memory and trauma of pain in my arthritic limbs and my contracting nerves, screaming for immobility. For Kanta, the hard space brought out her own configuration of movement and isolation in a space full of strange echoes and with restricted sight lines. Articulating this unease brought other private languages into the foreground. The effects of the deaf space and the space of corporeal pain became isolating languages that were spoken and lived in individual cocoons, isolating translations of individual physicality into social spatiality. In order to keep the collaborative process alive, we needed to return to some ground rules.

Communication and process One of the themes that guided our preparation for the residency was ‘legends’ – the legends in the margins of maps, which make maps readable. Legends rely on conventions to allow communication, on social contracts of meaning and translations. We were making contact, establishing lines of communication. The space clearly signified differently for each of us, a difference we discussed frequently.

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Legends are coded by color and shape. Contour lines show the lay of the land, different colored areas mark habitation, marshland, forest, and water, shapes symbolize vantage points, bridges, dams. On the first day of the residency, we pored over the many maps Derek had brought: not just geographical maps, but also historical ones, showing the ownership of landmasses and the movement of troops, and geological ones showing differently named land formations. These maps became tools in the illumination of our individual experiences of the corridor and stairs, and our frustrations on the edges of cocoons, hovering on the limits of our shared expressive capacity. We destroyed many maps, some joyously, dancing on them and ripping them to shreds with our feet. We were well and ready for some destructive action. Others we used in the space half-ripped, leaving only edges behind, plastered onto the wall: acknowledging the code of the space, and the violent struggle to rewrite its script. But thinking about the metaphors of space and movement contained in the maps, we also started to think about orders of movement. My painful body translated the movement of my limbs into sound, and in one section of the performance sharing, too tired and pained to move, I sang as Kanta and Derek Two danced, offering my rhythms and dynamics to them as an equal partner in the improvisation – to be taken up or ignored, counterpointed or aligned, just like improv movement offerings. As our movement material grew, we returned again and again to the function of legends, and to the problems associated with finding images to map the different experiences of bodies. As part of movement sequences, or after a completed section, one of us would notate the happening on the walls of the corridor, using differently colored chalk. Once again, the walls of the corridor were wrenched out of their visual continuity, the flow upwards or downwards, and they became a white surface instead, holding the traces and translations of movement in colorful lines. The act of notation, of creating these traces, was a movement act itself, incorporating high and low reaches, sustained arches, or dabbing actions. The traces notated activity, but were not readable. They couldn’t sustain the body’s memory in space; just like the string crystals were only temporarily cast, like Laban magic runes, against the rules of the corridor’s engagement with our bodies. Back to the drawing board. Legends are also stories, myths to live by. Stories emerge out of our movement, out of the human consciousness’ engagement with verticality Blanchard had described. Verticality, the organization of consciousness in upwards and downwards,

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heaven and hell, the shaman’s low, middle and upper realms, are constant themes in legends and myths, and provided ready material for the personal and shared fantasies that filled the space during the residency. In one scene, I am standing behind my wheelchair, crashing it again and again into the first steps of the stairs: a repetitive, ritualistic movement negated by the boundary the steps provide. And drawn down from the first landing comes Derek, descending the stairs, washed ashore in the corridor on the waves of the chair’s clash and movement. He advances, and the joint momentum of mine, the chair’s, and his movement draw him up again: up into a niche in the corridor wall, until he stands suspended in the ceiling of the corridor, one foot dangerously perched on the narrow ledge, braced out, supporting himself for a short time, until he has to swing down again, back, and up on the stairs, out of sight. In the creation process, this movement sequence emerged out of an improvisation with waves of draw and pull, densities in the flow of the corridor, compressing linear energy until something happened, something exploded. But as we worked on it, desire and mythical narrative intruded, mapped themselves onto the work. Without a fixed point of naming, the sequence became ‘Orpheus’ – a drawing from the nether(upper)world, a draw that is frustrated by its own energy, and that returns to the beginning position. This was my origin story of that particular moment, the long durational moment of burn and crash, of what happened in our time in the cold, drafty corridor, and how we made meaning. Here is how Derek figures this moment, enters it as a geographer into a dance world, in a research article for Society and Space (2005): Most of the week is spent in and on a narrow stairwell and corridor in the Chisenhale. Many little things unfold there: gestures, movements, performances, cringes, frustrations, tedium. In the context of the writing of this paper one event-full moment stands out. I remember it like this: in the corridor and stairwell I am working with another of the collaborators, Petra. She is reciting some lines in a slow rhythm and, at the same time, moving up and down the corridor in her wheelchair. She suggests that I take up this rhythm. I begin trying, by walking up and down the stairs and corridor to the rhythm of Petra’s movement. But, other than my walking, nothing of any significance seems to happen. Yet Petra persists, suggesting we keep trying. She continues reciting

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lines and moving up and down the corridor, and I, through my steps up and down the stairs, try to respond to and take up the rhythm of Petra’s lines of movement. Yet, as I do this, it seems that I am trying too hard, wanting and waiting too much for something to happen: something of significance, something that fills in the meaningless of my movement. And because of this, despite my steps, I do not know how to go on, do not know how to proceed in a way that eases that awkward sense of discomfort arising from the fact that nothing of any apparent importance is happening here. So I simply keep walking, advancing and retreating up and down the stairs as best I can to the rhythm of Petra’s voice and her movement in the wheelchair. And suddenly, and with some relief, something happens to allow me to go on. As I move up and down the stairs, an unsolicited, but corporeally precipitated memory introduces a note of creative difference into my movement, animating this movement with the resonance of another performance: the summer of 1913, a theatre in Hellerau, near Dresden, the production of a number of scenes from Christophe Willibald von Gluck’s opera Orpheus and Eurydice, and, in particular, Orpheus’s ‘Descent into the Underworld’. Although it is not called up deliberately on my part, the irruption of this memory into my movement does not emerge from the ether. In the months leading up to the collaboration I have encountered images and accounts of the performance of Orpheus and Eurydice in the context of research into a practice called eurhythmics. This practice emerged in Geneva at the end of the nineteenth century and beginning of the twentieth century through the efforts of a Swiss composer and pedagogue Emile Jaques-Dalcroze (1865–1950) to develop a system of musical education through rhythmic movement. … So I have a cursory familiarity with this production by the time I come to participate in the research residency at the Chisenhale. Yet I do not enter into this residency with the intention of effecting its reenactment. Rather, in the space of that corridor and stairwell the event of the memory of the document of this performance emerges unexpectedly but affectively through the difference in repetition of movement, through the kinaesthetic refrain of footsteps up and down the stairs and along the floor, and through the refraining lines of Petra’s speaking. In effect what happens is this: the affective relations between these lines of movement somehow cross a threshold of

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consistency in such a way as to produce an event-full space through which memory emerges without recollection, a space in which the actuality of the present is charged with the enlivening potential of the virtual, that ‘pressing crowd of incipiencies and tendencies’, a ‘realm of potential … where futurity combines, unmediated, with pastness’ (Massumi, 2002: 30). (McCormack, 2005: 119–20) This epiphanic moment of Derek’s encounter with repetition and space makes so much sense to me. The performance improvisation vocabulary I draw upon during Olimpias residencies comes from the durational and quasi-shamanic practices of Joseph Beuys, the dance theatre repetitions of Pina Bausch, Laban dance rituals and shape crystals, the half-sadistic, half-delicious concentrations of Butoh walking, and the seconds of Contact Improvisatory play, halted and held. In Derek’s encounter with these working methods, the power of these methods becomes apparent, newly experiential to me. Collaboration: his writing about the despair of rehearsal allows me to gain perspective on my deeply held, but not always articulated knowledge that ‘the body knows,’ or, if not ‘the body,’ something that is a sedimentation in my bones and thoughts, and that will get to it, will come to the fore, eventually. Trance and repetition and the edges of boredom are the liminal spaces where the virtual might break in and move beyond the willed and foreseen.3 Orpheus and Eurydice: for Derek, the story, the words, the myth emerged in the repetitive stepping on the stairs, echoing Appia’s stage set for Gluck’s opera. For me, Orpheus and Eurydice emerged in the desire lines thrown into space, in the expanding and contracting space between moving entities, linked in song, in the waves of echoes that break on the concrete walls. We both did not know we would end up here, but we did, in our living, breathing, speaking bodies, rhythm propelling him and me into a situation suddenly filled with history, emotion, frustration, and connection.

Audience and process Throughout the creation process, a distracted urban audience hurried by us, on their way to the studios above, or out of the Chisenhale away from East London. Sometimes, the hurrying would arrest itself, stopped awkwardly in its tracks. A passer-by would halt at the top of the stairs,

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seeing us blocking the path with our energies, diverting the flow of the action, that natural downdraft of the stairwell. Performance contracts – how audiences are supposed to behave, when there should be silence, stillness, who should move, how the space is marked – became visible to us and others during the week that we inhabited the corridor. Spaces suddenly became taboo. People were unsure whether they were allowed to traverse the invisible stage, the kinesphere of a moving performer, by walking on towards the door or the stairs. They would look for clues: ‘non-performing’ performers nodding to them, or giving them verbal permission. Observing the reactions of these passers-by, we saw a wide variety of modes of engagement with the unexpected. The space changed as people passed by: when toddler movement sessions were held upstairs, the only turning point for my wheelchair, a niche in the corridor, became a parking zone for strollers and buggies, writing new rules for my movement. At times, these buggies sans passengers, strange objects of metal and cloth, moved over our heads, between our heaving chests, and right over our feet in their cyborg animal search for the way out of our maelstrom. But the main challenge of our game to transfigure the secondary space of the Chisenhale occurred during the performance sharing, in April 2001. A small group of around 20 people had come, squished up in that narrowness. Some people were outside for parts of the performance, looking in from the door, or moved in and out. The space, so long starkly geometrical, had now become filled with flesh, with breathing bodies. No viewing stations outside the event were possible. Corridor, external door and stairs were all performance places, and we three performers had to negotiate our way past people, work with them, and engage in one-on-one street theatre techniques. Much of the sharing was improvisational; we, the performers, had open scripts, beginning and ending points, and periods of neutrality, where we were bodies amongst others, just hanging out, feeling it in East London. The performance played with a variety of moods. Banging Kanta’s miniature teapots signaled an Alice-In-Wonderland play with perspective: large and small, possible and impossible, two-dimensional and three-dimensional. Passionate lines of desire drawn through the space parted in tragic separations. Verbal commentary structured activities: Derek shouted, ‘said the geographer expectantly,’ from the Little Prince, to start a new scenario, a new arrangement in space. Sounding fragments of Samuel Beckett’s poem – ‘Step sole sound/ long sole sound/ on all that strand/ at end of day’ – made my voice move in an

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escalating waltz, singing with bodies crashing into walls. Spectators had to move, and react to the performance: we played hide and seek amongst them, throwing ourselves into the gaps provided by their bodies on the wall, notating their positions by filling up the negative shape they had barely left behind. The wheelchair banging forward and backward in the narrow space left little room for feet, and people handled the chair in ways rarely possible (or desirable) in everyday environments, becoming familiar with it as an object, a strange, beautiful creature. Towards the end of the performance/installation, a wholly unrehearsed action relied on audience participation. In this action, we reconfigured the first flight of stairs. Maps plastered the risers of the stairs, and we handed out small wooden and plastic icons of trees, houses, people, and so on (from children’s railway models), pieces of chalk and parts of torn maps to the people in a gifting action. We then invited everybody (without verbal instruction, through mime and facial expression) to come to the stairs, and to use their objects to create a map of the stairs as a place of habitation, while sitting comfortably on the steps. Many spectators followed the invitation, and, after placing their icons on the ground, chalking in a road or a line here or there, they took up individual invitations by the performers, enacting scenes of play, and arms began to intertwine, hands to hold each other. Together, we created pockets of action, mad-hatters’ nonsense games, contact improvisations. We focused the energy on the width of the stairs, not the up-and-down function of this space, and the world in there became wider, like a strange Tardis, Dr Who’s police box that’s larger inside than out. A fantasy house emerged: we found comfort in our positions. For the next performance segment, a repetition of an earlier one, the people who had taken up our invitation to sit on the stairs stayed there, watching the repeated action from a different point, even more ‘inside’ the action. We had created not only a fantasy map of a fantasy habitation on the stairs, but had also erected new versions of Bachelard’s huts – nests of comfort on this embodied map. How do I know this? Because people sat comfortably with us on the steps. They had shifted with us, and there was all that space, somehow. And that’s really the only way I, and we, have of knowing what was happening with the audience members. My journey as I share it here is mine, gained in negotiation with the journeys of Kanta and Derek. Our process aimed to transform ourselves and our embodied, habituated understanding of space as much as it was a direct political action designed to change the architecture of the space. We knew that there would not be an elevator forthcoming any time soon. We also

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realized that our working process would leave only marginal traces in the witnesses to our actions. And that was ok. As long as we got them to shift. To enjoy themselves, even if only strangely touched by our work. And to sit down with us, creating swirls in the trajectory of Chisenhale.

Outlook Pathways and energies, the connections between these Bachelardian huts, guided us in our creation of material of longing, desire, capture and release, habitation and space, home and the city. We found loneliness and sharing, tea parties and the tragic mysteries of ancient legends. But why there? Why on those stairs, inaccessible to one of us, uncomfortable to all? Why in a damp and cold corridor? Audience members asked us this after the performance, and no ready answer came forward. I am certain that the temporary physical and emotional distress of the location allowed us to access material we might not otherwise have found. I, personally, excavated the lines between a theoretical commitment to disability politics, my indignation at inaccessible geographies, and the skin of my body, living the spaces that surround us, and I offered to share that quality of attention with our audience. Cixous’s living, breathing body linked up with the speaking body, not in theatre and storytelling, but in the activation of memes, small memory bits, sounds and snatches of songs, in the condensed shape of poetry in my mouth.4 Derek’s closing reflections about the residency, in another research article in Cultural Geographies, contain this beautiful reflection on agency and the things that help: But there is no great revolution. Nothing turned on its head. No subversion, resistance, rupture. Not even any real dancing. What remains are subtle shifts, twists, and turns in the cultivation of geographical sensibility. This cultivation is about many things, but in the corridor and the stairwell of the Chisenhale it’s about thinking (cognitively, proprioceptively) through various architectures of movement. It’s about thinking through the animating qualities of possible attachments to mundane materials in mundane spaces. Mundane materials like maps. And how they help things along. (McCormack, 2004: 219)

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We found pockets, huts of living. In need of sustenance, we addressed the living conditions, and worked with them. We engaged in practices of everyday life, rituals that habituated us to our new surroundings. The text of spatial arrangement filled with our embodiment, and took on a new charge. In our bodies and practices, we had connected writing/ practice, writing with/as practice, and created a home for our differences, a home only strangely familiar, an uncanny home hovering on the downdraft’s cusp, balanced with all its discomforts.

2 Dancing Stories about Home: Aotearoa/New Zealand

Waka, war canoes, forging through cold waters, mountains rising from the sea, a heart beating under a mountain lake, an albatross sailing towards the Antarctic: these were the story-images of Coastal Mappings, a large-scale community project set in and around Dunedin, Aotearoa/New Zealand.1 In the Coastal Mappings performance project, people in the last months of their lives joined cancer survivors, family _ _ members and other interested people in explorations of Pakeha myths _ (by European-settler descendents) and Maori stories of the land (by descendents of the crews of the first waka, first inhabitants of Aotearoa). Together, we created personal landscapes through movement, storytelling, photography, and video. In this chapter, I discuss some of the opportunities, challenges, and experiences of leading a community dance project in an intercultural social environment, and with people whose relationship to their environment is different from mine. How can we honor different cultures and their heritages in community projects? How can disability culture, or a project that sees itself in that lineage, become part of the life story of people who do not necessarily identify as disabled? This is a project of intersecting lines, of journeys, crossed timelines, shifting terrain and the efforts of building a temporary home on earth. In 2005, I had the honor to be the first Caroline Plummer Fellow in Community Dance at the University of Otago. During my six-month tenure, I facilitated a community dance project that centered on a Dunedin hospice, a palliative care environment where people live in the last months of their lives. The project moved out from that location _ into libraries, schools, beaches, parks, Maori marae (meeting houses), and galleries. I chose the hospice as my project location for many reasons: Caroline Plummer, the young dancer who founded the fellowship 50

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with her dance tutors, family, and friends network had died at this hospice, and many remembered her well. My research focused on how to challenge my understanding of community arts. Here I was being parachuted into a foreign land, not an unusual position for cultural workers, but a complicated one. I usually initiate community performance projects in the communities within which I live, and Olimpias projects tend to last at least a year, often longer, as people come together to explore, to grow, to build disability culture. As a German woman from a European dance tradition in which storytelling features strongly, I am particularly fascinated by issues of movement and storytelling, by the transmission of stories, and by the transmutations they go through as different groups find ways of connecting to the land they inhabit. I am excited by fractured storytelling: by processes that mark modernity, that are aware of the different draws contemporary postcolonial communities experience, and that question any sense of ‘original’ stories, habitation practices, or holy heritages. Many of the people I work with identify as I do, as a disabled woman, and we are aware that our form of embodiment has traditionally kept us outside of (some) folk practices. So while we use circle forms, rituals, and other elements that link to older art practices, we do so with a twist, not so much ironically, but with an awareness of the struggles we had to go through to come to these appropriations and citations, to call a place a home, to call a practice a home. This awareness of the political charge that our forms of embodiment present to mainstream and folk culture nourishes Olimpias’ politics. In Aotearoa, my focus wasn’t so much with disability activism, but with learning about other ways in which negotiation and change mark our artful collaborations with stories, lands, and bodies in transit.

Land stories A right to stories and words and an ownership of stories is by no means a given, in particular in colonial and postcolonial environments, where land, words, bodies, and stories have shifted, ripped, re-coalesced, and revalued. In Coastal Mappings, we were working with different kinds of cultural contact – contact between the living and the dead, different human inhabitants, and the connections between non-human and human dwellers. Honoring the multiple carriers and transmitters of sto_ ries was part of our agenda. Many of the Maori stories that intertwine so deeply with the places of Aotearoa weren’t told to, or known by, the

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_ _ predominantly Pakeha (white European-heritage) hospice participants when they were children, at least not to the older ones who didn’t receive some level of bicultural schooling. When we were creating sense memories of home places and of the stories we associated with them, many stories were private and personal. Some of the hospice users spoke about growing up without strong storytelling practices, alienated from Celtic and other storytelling traditions their Irish, Scottish, and Welsh parents or ancestors knew. And so some of them made up their own stories about the land. And _ even though they didn’t know the full stories that Maori have long told about the places these European immigrants now called home, _ the private stories they did tell and worked with often involved Maori _ _ place-names, and the fantasies these Pakeha children built around the (vaguely remembered) translations of these names: A river called ‘lazy _ lizard’ in the English translation of an older Maori word led one of the participants as a child to imagine stories about lizards living in the sea – _ different and yet related to the Taniwha (water demon) stories Maori have about the same place.2 In our workshops at the hospice, we used _ these memories of childhood stories and their interweaving of Maori _ _ and Pakeha realities and imaginations to build up a map of living in the locality, honoring the networks of habitation and home. Photography became an important component of our work, as it allowed us to share with people outside the hospice something of what we were doing. What we shared were colorful, dynamic images, often seen as beautiful – but these images were not illustrative. We held our stories close, and our hands offered up the act of telling, not its content. Together, we constructed witnessing photos: images created with a small digital camera, easily handled by participants, images that captured in some form our experiences. In these sessions, we began by working with regional myths and moved toward thinking about places and spaces where we’ve felt comfort, that we called home, that were important to us and acted as reservoirs of memory. Over time, we mapped parts of our life experiences onto specific landscapes, or memories of these landscapes, using movement as a way to access memory – small movements, a hand tracing lines in the sand, a head sinking to the side under the weight of sunshine, shoulders sliding downwards under the caress of the coastal wind. We worked with materials I brought in response to stories told to me and places mentioned (stones, bark, wood from the beaches, shells), and we used small gestures and caresses to respond to them and their energies. Many people had said good-bye to their favorite places, knew they would never see them again, and

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mourned their loss. Holding a shell from a specific beach, a leaf gathered on a path described in our session, became part of the gifting and memory work we created for ourselves. As they negotiated the imminence of their own deaths, many of the hospice participants worked with a careful attention to the breath of life, alive around them in the wind, and in the stories. In order to capture what we were doing, and to share it with the wider community, we took photos of our hands, with the camera circulating amongst us. We looked at every image together, building up further layers of impressions, stories, and emotions. In between my weekly visits, I manipulated the images’ colors, responding to suggestions and echoing some of the content with which participants imbued the specific movement or moment captured. The first story that began our workshops, and that returned again and _ again, was a Maori story about the creation of a lake in the Southern Alps, not far from the Dunedin location of the hospice. I had been given this story by a friend before coming to the South Island. The part of the _ story we focused on talks about a giant who desired a Maori princess, abducted her, but was hunted down by the woman’s lover, a warrior who slew the giant and burned his body. Where his body burned away, water rushed in to form Lake Wakatipu. At the bottom of the lake, the giant’s heart is still beating – and in response, the lake breathes, heaving slowly up and down. The story had many connotations for participants: love surviving, a heart still beating after many destructive experiences, a strange biology deep inside familiar tissue, but also gender violence and the trauma of continuous warfare.3 And so the heart found its way multiple times into our photographs, as did water creatures and sea life. One of the images is called ‘Josephine’s Un-Broken Ring.’ She created the pose in response to the giant story, and also in order to show the ring that was broken during her chemotherapy, when her fingers swelled. Josephine saw no point in repairing the ring, and in all important ways, the ring she has worn for over 30 years is still unbroken. ‘The other creature’ – the cancer – that is how she talked about the cells taking over her life. The final photograph is shaded in blues and greens to capture the Taniwha, the water creature, a figure that she remembered from legends and from the private stories she made up as a child. The ring area remains gold: through color, the break in the ring is mended. To me, German tales intertwined into these blues and golds: the gold of the Nibelungen saga, and the Taniwha became for my internal eye part of the water-creatures of the Rhine, the water of my childhood.

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Josephine and I talked about these different stories, their richness, and how we can find shapes for unfamiliar landscapes through the stories we tell ourselves. Josephine’s fingers form the shape of an anatomical heart, and she wanted to emphasize the motion of sheltering – a gesture she used to create the next image, in which she holds a piece of tree bark tenderly, expressing what she felt as its loneliness, and its need for tenderness. Another patient’s image is called ‘Harriet’s Peninsula,’ and it responds in coloring and shape to Harriet’s stories about the place she wanted to be laid to rest: a wind-swept cliff far out on the Otago Peninsula with its muted greens and yellows. When I visited her bedside, Harriet spoke about her love for this countryside, and of her many memories of walking on its beaches as a child, listening to stories and legends about natural features and local inhabitants her storyteller uncle shared with her. She also worked with the story of the giant, picking up a Paua shell for its textures and colors, and likening it to the heart. Harriet not only gave me permission to talk and write about some of the things she shared with me, she also felt strongly about the digital photo’s status as witness and memorial to her, and prepared her photo specifically to be given to her children. Her daughter later visited with the public parts of the project, and recognized her mother’s story in the work. Most people who worked with me participated actively in shaping their images, filling them with meanings (and all images were only released once participants found them finished and gave permission). A color speaks about a power word, a location’s color, an important story that held some part of the richness of a person’s life: like Josephine’s faith and ring, like Harriet’s love for the peninsula, walks over decades of living, short sayings her uncle shared with her, her color sense and description of the light on the hills, her delight in the shimmering colors and heft of the Paua shell. In constructing the images and stories, the outdoors and the many natural beauties of specific locations in and around Dunedin came to life in the landscapes of our bodies, filled with energy and emotion. The photographs share a new and unfamiliar image of the hospice, of people on the edge of life, and specifically of people with terminal cancer diagnoses, with the wider Dunedin and Otago communities. In these images, end-of-life periods and the hospice emerge as times and spaces of beauty and dignity, deeply connected with their environment.

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Translation and intimacy It can be hard to translate private and intimate experiences in community arts projects outside the workshops themselves, and to connect these intensities with wider audiences. I am aware that I am only telling about the stories here – I am not actually sharing many of the specific stories. There were no tape recorders in these sessions; this was not history from below. The point of so much of this work for me was energy exchange, being together – having tea, seeing the momentary vibrancy of the colors, rather than holding onto often rather vague memories and story-fragments. I am not sure if I would have fully informed permission to tell these stories as full stories, beginning/middle/end, or to tell of the personal memories that connect to the natural images. I did not often take time out from these performance creations to ask for specific permission, and so specific stories, like Josephine’s ring or Harriet’s peninsula, where the participants repeatedly told the same story and clearly signaled their willingness for that story to be shared, are all that I can hand on. The core of our experiences, then, remains hidden here. Telling about these stories is one way in which the circle of our audience expanded, overcoming the unspoken dread of the hospice. But there were other ways, embodied poetics, embodied sharings. The stories and images created in the hospice journeyed outwards, and initiated other movements, in Dance with a Difference sessions at the University of Otago Physical Education Department, with people who experience pain or stiffness as well as others who were interested in how movement and storytelling come together. We created choreographies in responses to the small gestures, movements, and images from the hospice. One of the participants told me about boulders in the surf _ of a local beach, traditionally, in Maori stories, understood to be food _ baskets that fell out of the first Maori waka, canoes that landed on the South Island. This story became a photo of a small round paua shell in a man’s hand. Now this story/image emerged into a line of women fusing into a waka, using their arms and shoulders to push oars down into an ice cold ocean, all working in unison, one left, one right, in an instantly _ recognizable cultural image deeply associated with Maori culture. Many of the Dance with a Difference participants came from the local cancer societies, whom I had visited to invite members, and many knew participants in the hospice, creating strong connections across the different project elements. Cross-generational movements led to storytelling and to touches of soft, papery skin on sunburned young limbs.

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Figure 3 Dance with a Difference class, Dunedin Cancer Society, 2005: rowing the waka

The dances moved on in turn. From the over-heated rooms of the hospice to my gathering of shells on beaches, from the memories of child- and adult-hood walks in the lands surrounding us to the mythical stories of ancient heroes, from the benches outside the public library to the rarified space of the main Otago gallery – the stories and movements generated by our project traveled across the spaces of Dunedin. In a sharing at the Dunedin Public Art Gallery, the choreographies of the Dance with a Difference group, captured in a dance video (videographer Nancy Higgins), and the witnessing images and poems from the hospice provided the material for a performance installation. Here are some of the poetic fragments that floated above the gallery – spoken in local and foreign voices, accents intermingling and shifting the boundaries of the known through prosodic intervention, through the timbre of the voice: there is a heart under the water the canoe landed on the beach the food baskets fell out and became the Moaraki boulders

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and then later it reemerged as eggs leaving the two hills slanting down to the water take your time to smell the roses the tears of the goddess became the glaciers on the mountains the giant’s heart is still beating taniwha the taniwha’s claw appears the taniwha’s sanctuary after radiotherapy, the ring is still unbroken brokenness isn’t the end of everything Long ‘ee’s, different pronunciations of ‘Taniwha,’ the somewhat broken delivery of a line by an elder woman’s voice, the melodic quickness of a young girl, the gruff sounds of a young Kiwi man, a British voice: traces of travels and arrivals mark all these lines. Members of the public who visited the gallery that weekend were _ greeted by the voices of Maori taonga (cultural treasures), a putorino and a koauau – traditional musical instruments, played by another honored

Figure 4 Dance with a Difference class, Dunedin Cancer Society, 2005: the taniwha’s claw appears

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Figure 5 Olimpias videographer Nancy Higgins on Karitane beach

caretaker of stories and traditions. Our musician, Hone Makateha, is a cultural therapist at Moana House, a residential cultural therapeutic community that caters for male offenders and rehabilitates through _ _ an emphasis on Maori values and wairua, the te reo (Maori) word most closely translated as ‘spirituality.’ Over it all, sounds float, haunting the dancing and talking people. The flutes are made from carved albatross bone, and speak to me of connections to the sea, and to the wide spaces of the Antarctic, beyond Dunedin. This inclusion of what is not there – the sea, the dead, the wide wings of the Royal Albatross – that is for me what I experienced in the middle of the circle, amongst people celebrating death and life. People moving into the Gallery see large video projections of dances, and hear these poetic fragments that hold keys to the stories of the witnessing images, spoken by local artists who participated in the project and who had come to the videographer’s home one night to speak into our microphone. These poem stories are not fully present: they are veiled, half-formed, open to interpretation, and yet evocative. The poetic fragments speak of the mutual labor involved in storytelling, the labor of speaker and witness, the translation across

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media and bodies. But the gifts we are giving our audiences demanded a sharing back in response, and people find themselves becoming performers themselves. Five times that weekend, I invite the audience into a sharing circle. In the middle of the spacious gallery rooms, up to 30 people join hands, some rather bewildered about being asked to dance themselves rather than watching dance. But the gentle flow of movement images and sound that surround us seem to help people to enter into public movement, and all are game. In the circle, we acknowledge that there are many absent presences: people (from the hospice, from the wider his_ _ _ tory of Maori and Pakeha, and also Caroline Plummer herself) who had joined and left the circle. And then we dance, with Caroline’s parents, with many other family members of hospice participants. We improvise together movements based each time on a different one of the stories that had emerged from the hospice work, and that had informed the choreographies in the Dance with a Difference sessions: the Moeraki Boulders, the Giant under Lake Wakatipu, the Taniwha in Dunedin’s harbor, the creation of Aoraki/Mount Cook. So how can we hold on to the experiences we have together? Of course, I can ask community members to write about what happened. One participant writes in her comments about the strength of taking community arts work into the ‘mainstream’ cultural spaces: ‘I loved the fact that you got people dancing in the gallery. I liked the fact that you took local people’s stories into the main gallery, which was very powerful.’ Another participant focused on the nature of the dance we engaged in: ‘It is about participation of ordinary people, making dancing accessible to everybody, bringing it back to storytelling, claiming dance back for everybody.’ Another comment again brought out the waka, the canoe, as a transport mechanism, as a means to bring people together. This visual representation, I believe, demonstrates how imagery, music, sound, and movement can transport the observer on an imaginary waka. The project was able to bring different cultures and people together and boundaries between them were smoothly _ _ _ _ crossed. Pakeha women were dancing to Maori flutes and Maori _ words. Young Maori male musicians and singers, just out of prison in a community program, were sharing their culture and aroha with Hospice clients. A diverse Dunedin community has had a wonderful opportunity to share their experiences and creativity together through the Coastal Mappings project.

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I value these statements, which can flow so easily into my project report to the Foundation who made this fellowship possible. But where is there space, in verbal response, to witness the pain of an old man who tells me urgently that he is not ready to die, not ready, does not want to die, does not? And how we hold silence together, sit still, and let it roll around the room, never above a whisper, never disruptive. But we listen to it all the way to the end. From the memories of hospice users, over the surfaces of photos, via cancer survivor’s dances, into the voices of local artists, to the surprising sharing circles in the gallery that refused to differentiate between participant and audience, Coastal Mappings charted numerous spaces and bodies of art practice in Dunedin. And Coastal Mappings had many more components, many dance workshops in small local public libraries, where we discussed alternative, embodied modes of storytelling, and moved amongst books. Students from the Dunedin dance department joined me for sessions at the main Dunedin Public Library, where we set up Story/Movement exchanges. For a few hours, the students would roam the library, and engage people – many elderly, many eager to talk to the young folk. The public library is one of the few heated and publicly open areas in the city where one can stay safely for a while. In these exchanges, people received a dance movement as a gift in return for a story. Over the afternoon, we collected these movements and stories in Laban movement choirs, expressive communal waves, dances that snaked in and out of the levels of the library and into the surrounding shopping area. There were many different stories: a Malaysian immigrant told the story of her visa applications, the heartbreak of families ripped apart, the pain of postcolonial relocation. Another woman told of early dancing lessons, of how she and her sisters would go to a local dance, meet fellow farm folk, and she described in great detail dresses she had not worn or seen for 70 years. The student working with her gave her in return a movement of dressing elaborately, a movement she would later incorporate into our dance chorus. An exchange ensued, words and body memories merging: between the two of them, the student and the elder explored how the dresses would have been fastened, how many layers there were, and where there was tightness, where space. One other component of Coastal Mappings was particularly powerful to me: I was invited to run one of my dance/storytelling workshops at a four-day Moana House Hui at the Otaku Marae, with 50 participants who created dance improvisations, each with a mehi (formal introduction), a karakia (form of prayer) and a waiata (a song). I might have been

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a fish out of water, unsure of how to behave appropriately, desperate to not just become a wide-eyed anthropologist eager to get the names of the dance components right. But what I had to share were the stories of this locality, told to me by elders, and that was enough to give me generous passage. One of the participants spoke about this particularly: he valued that I was there to share some expertise, related to their own practices and usable in their own work – I wasn’t there to either extract anthropological data asking lots of questions, or teach them. And once during that day, one of the men took me aside and told me about being a gang member in Auckland, about how he had killed men, and he watched me closely as he stepped beyond polite niceness, and let pain flow. I stood with him, watching the red glowing end of his cigarette, looking out together over the peninsula. I had visited the remnants of _ pa, fortified villages, in the region: holdouts where Maori chiefs and tribes lived uneasily with the sealers who took up residency out here, on the Southernmost tip of Aotearoa, in the early 1800s. It was only in 1770 that Captain Cook named and claimed this part of the world for the British crown, and it was in 1835/36 that measles and influenza _ _ _ brought by Pakeha ravaged the Maori settlers in Otaku. These are short histories: not many generations stood between us quietly thinking about the personal and cultural costs of postcolonial lives, and the life of violence and alcohol that engulfed the sealers, the whalers, the tribes, twisting into uneasy truces with the incoming missionaries. Eighteenforty was the year of the first Christian service on the peninsula. In 2005, I had visited a dance performance held on this marae, Ngai _ Tahu 32, by Atamira Dance Collective, an important Maori contemporary dance theatre group.4 In this show, still touring in 2009, company director Louise Potiki-Bryant cried out to her direct ancestor Wi Potiki of the Ngai Tahu, buried behind the meeting house, demanding to know why he sold the land of Otago, why he stooped to the ways of the newcomers. A woman’s karanga, the haunting welcoming cry with which newcomers are greeted onto the marae, undulated through the night. Dancers clad in colonial dress stepped like ghosts through the past, the present, and the future, pathways of light projected onto a shallow water-filled trough in which the dancers moved.5 Around the space, video projections of tukutuku patterns, ‘the oceans between the _ carvings,’ reference the geometric patterns of Maori designs, which speak of continuity and genealogy. In this show Ngai Tahu 32 (referring to the colonial file in which the land sale was recorded), whakapapa, the genealogy of land and people, binds an ongoing history that is strong and cries out into the future. In one moment in this measured,

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ritualistic show, a woman writes with a feather quill in the water, and I see the liquid stirring. These histories, recorded in sound and bodies and land, are not lost. The final Coastal Mappings sharing took place at the hospice. There, we had a hand-over ceremony, gifting copies of the witnessing images to the hospice in front of a newspaper reporter, and we showed the dance-video we created out of the stories from hospice participants. A performance framed these events: Hone Makatea had brought his men from Moana House to the hospice. They sang songs for us, and shared themselves with the people in the hospice. Songs echoing through the corridor of the hospice and beyond, up the mountains and down the stream closed the circle of our project. They reminded us of shared connections to the land, of the ways engravure happens in water, in air, in bones, and skin, not only in land deeds and the filing archive of the colonial administration. Who recites the place of the dead, who calls up the filigree of connections, the patterns of time and land that hold the spirits? This ends my description of the Coastal Mapping’s multiple ways of transferring agency, story, and presence between different players, car_ rying the life-energy of the Maori stories of the land, the second-wave _ _ arrivals and colonialists, the Pakeha, and the individual life energies of the hospice inhabitants forward. But there is a halting here, in my telling, a withholding: there is lots I did not share in this sharing, there are private conversations, touches, sudden knowledges, specific dance steps, giggles, and memories that I guard. Why?

Trouble in paradise There is much to this story that I have trouble sharing, and certain disciplinary conventions hinder my own storytelling here. My home, performance studies, has few resources to talk about some of the affective registers of this kind of performance work in ways that do not fall into celebration, sentimentality, or narcissism.6 This is work in a hospice, and there are things one gets to know in that kind of environment that exceed what can be spoken: things about differences between people, different life-paths, sudden openings and epiphanies, experimentation, and vulnerability. I struggled with this conundrum in my practical how-to book about community performance, where I did write about Coastal Mappings but shared only certain practicalities of our journey.

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I have worked in hospices numerous times, both as a volunteer by myself in the small town of Brecon, Wales, and in collaboration with other artists as an outreach worker for the University of Swansea. What I found in Aotearoa/New Zealand is similar to what I found in the United Kingdom: some of the people in the hospice have embraced their impending death, and are open and receptive to things that they would, most likely, have frowned upon in their ordinary life up to their encounter with their own ending. It is an amazing and generous space for an artist who approaches her labor from a class-conscious perspective. I am allowed to communicate and find companionship with people who have very little exposure to art experiments. Not to art: many people, particularly in the United Kingdom, were not strangers to art at all, they were poets, great ballroom dancers, weavers or knitters, musicians or painters, and shared their work in living rooms, parlors, and pubs. But experimental or performative approaches that were not based on traditional ritual were unusual to them. In these quiet and meditative moments of working together in hospices, whether in Wales or in Aotearoa, we were able to draw out sensory experiences. In one visit in Wales, I brought my Tibetan sound bowls and worked with a woman whose body was so sensitive, so painful, that touch was not desirable. So we worked with the sound of touch: the struck sound bowl, held close to her feet, would send waves of sound through this woman’s bones and body, creating a deeply pleasurable and creative form of touch and connection through the tunneling of sound. This woman and I were using a language of mystical touch: we were not engaging in a sci-art experiment (the language we might have given this kind of exploration in the art environment of the late 1990s in the United Kingdom), we were engaging in ritual practice and touch. And then I get to go home. In my visits to the hospice, I often found myself so reluctant to go to my twice-weekly visits, and then both elated and in tears afterwards. This was emotional labor. And affective labor: something impacts, beyond emotion, and, instead, the non-narrational, non-emotional, non-graspable nature of living beings as temporary entities enters into view. I feel that something important passes, and passes through me and these particular hospice participants: a connection that exceeds what we are creating, and that links us up, quite directly, to the energies of the sea and the mountain, the albatross and the Welsh iron works, whatever it is that surrounds us and shapes our stories. I see the ripples in that long watery trough on the marae, the

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dancers’ feet creating waves and vibrations that carry all the way to the end, overlap and articulate themselves in patterns. It is emotional labor to write this down. This is another way in which an artist’s book demands a different writing from me than my previous critic-focused books. If I want to make practice my home, I need to bring myself even more into the circle of this home’s hearth, and feel the fire and the water. There is often little distance between me and the art practices I set in motion, even (or particularly) when I do not direct them, but also when I allow myself to be swallowed up in the energy of the process, when I do not know where things are going, and am yet charged to steer a course. To be both impacted by emotion, and yet shape artwork out of it, can be a complex engagement. But having ‘confessed,’ as if my somatic and emotional engagement and disengagement with people in the last months of their lives were somehow shameful, let me step back again, and link my observations here to some thoughts about disciplinary genealogy. Shannon Jackson’s Professing Performance (2004) traces case studies of intersection in the emergence of the core discourses that shape Performance Studies as a discipline. In one of her chapters, she questions the ‘newness’ of Performance Studies’ story by reference to a drama theorist and cofounder of cultural studies, Raymond Williams. A figure only occasionally mentioned in US performance studies environments,7 Williams was one of the main figures who shaped my own way into ‘the discipline.’ And the first hospice I worked in is within a short drive’s distance from the Black Mountains Williams talks about when he grounds himself in his biographical statements, his whakapapa. Williams posited that what was to become cultural studies excavates the ‘structure of feeling’ of a people, a time, a space. This formulation undergirds my own thoughts about the efficacy of performance. Class thought, workers’ oppression, and the ideals of education for all shaped my first performance interventions, and shaped my notions of bringing dance, vibrating soundbowls, poetry, and storytelling into hospices. Just as my main memories of these workshops focus on my emotions, I had in my mind the structuring effects of values, language patterns and institutions on the emotional associations of the people I was working with. How would they feel? How did their various structural embedments set up strata for feeling? And how could embodied work and memory practice access, re-channel, create flow for emotional energies? Looking at these questions from a twenty-first-century US academic perspective, it is possible to see a questionably enthusiastic belief in performance’s political power, but these issues hold power over me.

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In Dunedin, we reached for emotion-rich story material, linked to physical memories and visual cues, and activated in movement and through Hone’s songs. We honor the labor of lifetimes, the ‘structures of feeling’ laid down in long years in the instantiation of a culture through an individual life. For Williams, his perspective on culture was shaped by the complex performances and texts that make up ‘Englishness.’ This feeling of being English was conceived as racially and ethnically homogenous, but cultural studies scholars found scope within Williams’s initial project to conceive of more heterogeneous cultures, cultures in change and in tensions within themselves, not only in class terms, but also in terms of other forms of (postcolonial) difference. In the spirit of this way of thinking about culture, I conceive of cultural performance labor as an action that takes the responsibility to make an intervention. I take permission to try to manipulate these structures to let rivers flow _ _ _ together: Pakeha and Maori, rural workers and care workers, offenders and people offended by them. There are issues of ethics here, in these decisions I make to change the course of rivers. As was already apparent in the last chapter, these projects are not all cozy affairs, and many bring up harsh realities, and expose nerves. I make a decision to do so – but I am also aware of potential hubris in these gestures. I work in collaboration, but I also produce these events when I issue my invitations, hold open the crucible within which people shape what we do, and shape themselves, and our engagement. Am I wasting people’s time and psychic energy? Is this often quite poetic approach to cultural contact, our pasts, and our connections to land really the most effective one – and effective for what, exactly? Answers to this question cannot come from my intellectual engagement with the issues we are exploring, or from the funders who make the work possible. They can’t come from the critical reception the work finds on the art (criticism) market, which easily gobbles up these explorations of liminal states, the romanticism of death, the spectacle of disability, and knows little of the highly specific cross-cultural, cross-class, cross-bodily communication practices and their potential momentary effects on the micro-level. Maybe most controversially, I believe that answers can’t even come from the things participants say at the end of projects: language around art is fraught with genre conventions, polite statements that hide what is really important. My answers, the answers that sustain these practices, can only come from the intensity of these odd moments, the sound waves running through my hands, through her feet, up her spine, up my spine, in synchronicity. These answers are word-less, as words are already too steeped in the disciplinary or

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conventional knowledges that tend to negate non-verbal communication. They can only come when a woman extends her hand with her split golden ring to rest in mine. They come when I can step into the river to feel the feeling, and stand on the shore and see the river’s course, at the same time. My own river diverts and changes, ebbs and flows, like my tears, and yet, I always have to try to remain open to where my movement, both my dance and my capability to be moved emotionally, comes from. At all these times, I need to hold on to my feeling of my outsider status, the near stereotypical German who is fascinated by South Sea stories (and, indeed, a fellow German was an honorary member of the _ group at the marae, a person who had learned te reo, Maori language), and also the German who is the remembered enemy of the hospice _ participants who fought against Nazis. Maori and other South Pacific people hold the space of antipodal Utopias for much of German cultural history, and I was not unaware of the ironies of my presence there. I know that some of my movement was fed some force from the xenophilic dreams of a colonialist nation, from romantic dreams of noble savages. I am also always an outsider in the hospice, the person who can walk away, this kindly invited but foreign, strange artist, and I had plenty of experiences that made sure that I never felt too sure of myself. For quite a few weeks, I sat quietly having tea with the hospice inhabitants, as no one felt like having an art session. At times, I sat by myself in our workshop room, and waited in vain: pain, fatigue, and other thoughts kept participants from working with me. It’s quite humbling to be a community arts worker, and that’s also a good thing. All we shape together remains, and vanishes, and sometimes it is hosted just by me, and sometimes by a group, and sometimes by many single individuals aligning their journey, for a short while, creating vibrations together.

Seacliff During my time in Aotearoa, I also worked outside the Coastal Mappings project, creating connections with disability organizations around Dunedin and beyond in keeping with my commitment to disability culture activism, and to the deliciousness of making connections. I visited centers and meetings, and just hung out, and sometimes, art would happen. One of these smaller projects was with people with developmental disabilities who remember living in Seacliff, an iconic Southern Hemisphere asylum. In cultural circles, it is most famously the site of

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poet Janet Frame’s barely avoided lobotomy. She was slated to undergo the operation, but then her first novel won a literary award, and that swayed the authorities to halt the proceedings. Jane Campion’s film, Angel at my Table (1989), tells this story for an international (feminist) film audience, retelling episodes from Frame’s autobiographies (1984). Located on a wind-swept shore on South Island, Truby King’s famous new treatment regimes meant that inmate labor created extensive gardens around the asylum.8 In 2005, I collaborated with local disability culture organizations to create witnessing performance events and rituals in these grounds. My core collaborators were elders with developmental disabilities, many non-verbal, who had all been inmates in the asylum before its closure in the 1970s. After many attempts, I feel unable to write about these rituals, although I could write quite beautifully about my experiences on the site, about the land and the stone buildings buffeted by winds. But I do not want to write an elegiac text that reads the land for clues of atrocity or ordinariness. I tried to write about the empowering function of ritual and performance, and about the problems of working in an environment where informed consent cannot be assumed, and where issues of privacy, unknowability, and dignity pressure my work as a public artist. But my writing stopped each time, and in the end, I decided to just leave these few paragraphs as placeholders for experience. There are so many problems: How much can I ethically share the work we did together, me as a foreigner working with people, many non-verbal, mainly in their sixties and seventies, many of whom were revisiting the site of their incarceration for the first time? As part of the performance, advocates and representatives of people with developmental disabilities joined us from as far away as Australia and witnessed our dance, our songs, our walk through the grounds. But beyond these human participants and observers, trees, birds, and the sea beyond the gardens also joined into this witnessing. I tried to find ways of articulating this emplacement of the perform_ ance work, drawing upon my experiences working with Maori elders, _ and upon my readings on Maori conceptions of time and history, on spiral temporalities and the effects of colonial contact on structures of feeling.9 An essay, my writing at the site of these experiences, did not feel quite right. I have shifted some of my fascination with these themes into a performance text and exercise series I continue to work on. It feels easier to try to articulate what I learned in dramatic voices, with multiple actors carrying lines forward, with improvisation as a way of marking fragmented knowledges.

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Intercultural issues can open up ways of thinking about disability culture, can open up perspectives on foreignness, visitation, the rituals of institutionalized life and life ‘in the community.’ These all create cultural contact zones, and it would be so useful to write an essay that uses that structure to house my thoughts about the Seacliff ritual, the location, cognitive difference, and intercultural contact. So I have never written this essay. Whenever I try, I come up against the memory of the song one of the elders sung for us as we were holding hands in a circle in the garden of Seacliff. We had gathered into a circle together, after having moved about the grounds in small groups, some of us gathering a flower, a leaf, a stone, to bring to the final sharing circle and leave in the middle as an act of farewell. Some of us held flowers; others had just stood with haunted eyes. And the song, this woman who had spent years of her life in the institution was singing. I felt both sadness and relief when I heard her song, but if I were to write more about it, I’d make her into a symbol even more than I do already, or allow you to make her into a symbol, her song into sharable meaning rather than the ritual drone it became in our outdoor circle. Some of the accompanying care workers offered potential explanations for the few words of her song, but no one knew exactly what it was about, and the woman only answered all questions by holding my hands. Quite a few early readers of this chapter, reading this passage, felt strong emotions at this point, wished to know exactly what happened, and felt frustrated. I want to turn it around: if I had not marked the absence of communication, if I had either just left these passages out, or else just shared a few words from this particular song, would you feel as strongly? Would the issues at the heart of this complexly sanctioned intercultural exchange be as vivid as they are, now, with the deliberation of a secret held in this writing? The Coastal Mappings participants in the Otago hospice had shared some of their stories, in full knowledge and acknowledgment of how what we were creating was going to circulate beyond the hospice, and even, ultimately, in something like the pages of this book. They knew I was an artist and academic, and knew what that meant. But I had no way to receive from this woman permission to use her song as a symbol, to extrapolate from her performance themes of loss, mourning, all these meanings that kept flooding into me that day at Seacliff. Why does it feel appropriate to share the non-verbal communications that occur in hospices but not the ritual circle at Seacliff, or, even, what exactly happened on the marae? Because there are too many stories that are told of those labeled ‘developmentally disabled,’ or ‘mad.’ And too

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many stories told of indigenous others, tribal rites, authentic foreignness. There are too many stories told in languages that have dominating power. There is something lost in not telling of moments of cultural contact, but there is also power in just naming that something happened. These paragraphs are a stand-in, a container that will not be opened but that witnesses an encounter. And there is another layer to my reluctance: an acknowledgment that we are only at the beginning of the path of disability culture, we are in emergence. The story of Seacliff, which is romantic and haunted, and has found echoes in many Aotearoa/New Zealand literary works, is ultimately not mine to tell. I am grateful that my mobility as an international scholar and artist allows me these rich experiences, but a few days spent together in between the Coastal Mappings project days do not empower me to host this narrative. So far, few disability culture narratives have come out of Aotearoa/New Zealand into international focus beyond Janet Frame’s story, but there are many activists there, and I am looking forward to their cultural production. Till they come forth, I mark the presence of stories, without their content. Containers, richly yellow and black amphorae shaped out of mud: that is how ancient Greece held the ashes of dead ones, and that is the canvas on which their deeds were memorialized. These amphorae and their contents became part of colonial exchanges. The shiny surfaces of photographs, and the treacherous words on a page, can be imbued with similar functions: to hold and keep safe, and yet to create an opaque distance that marks that experience is not to be had this way. The shell in my hand, fingers in my hand, sound in my bones. That’s how I remember the land with the double name, Aotearoa/New Zealand.

3 Community Arts and Practices: Improvising Being-Together

At the heart of this chapter are two art projects which articulate at-home-ness in myth stories: ‘Earth Stories’ and ‘Sleeping Giants’ – digital videos that emerged out of a two-year long workshop series with a group of mental health system survivors in Wales, in the United Kingdom. As a resident of a small Welsh village, and a fellow disabled person, I collaborated with people using the village’s mental health self-help center, and we created communal poetry, dance, performance, traditional music, and video. In the following, I use ‘we’ when I speak about our practices and intents, and I use it advisedly – there is of course a tension between our art work and my academic writing about it, claiming a communal voice that cannot be anything but my own single one. But given both our experiences together and the theme of this chapter, I have chosen to stay with the precariously positioned ‘we:’ the (im)possibility of community in the cauldron of essentialized identities and notions of ‘the nation.’ We used local legends and myths to find new ways of affirming our presences in our environment. With this, we found concrete ways of intervening in the negative representation of disabled people, and in particular mental health system survivors, in our locality and beyond. Acts of storytelling allow me to discuss our work as a meditation on how to approach community art work that wants to speak from a group, and from individuals, without canceling out experiences, showing the longing to ‘belong’ and yet the inability to completely merge with one another. As individuals, we exist in relation – we are neither fully separate, nor fully embraced within a group. So how can we both create and query ‘community?’ Philosopher Jean-Luc Nancy provides theoretical tools to consider community beyond self/other relations. In The Inoperative Community, 70

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he configures community by thinking about the way that being-together can resist and deconstruct dominant power relations, which attempt to weld the process of being-together into a fixed state. Community exists in relationship and negotiation, and in openness: Community is what takes place always through others and for others. It is not the space for the egos ‘subjects and substances that are at bottom immortal’ but of the I’s who are always others (or else are nothing). (Nancy, 1991: 15) The Others of the I emerge because of the finite nature of the singular: for Nancy, singular beings lean towards others, searching ‘contact of the skin (or the heart) of another singular being … [another finite being] always other, always shared, always exposed’ (1991: 28). This community is inoperative because the moment of sharedness, of an absolute connection, is sundered as it emerges: it is negated by the singularity of the I, just as the I leans and cannot help but lean towards the other. There are no egos that claim immortality, only I’s that know of their limit and seek others who share this limit, too. Storytelling and myth making are important parts of Nancy’s articulation of the inoperative community, a community that becomes inoperative at the same moment at which it offers relation. We know the scene: there is a gathering, and someone is telling a story. They were not assembled like this before the story; the recitation has gathered them together. In the speech of the narrator, their language for the first time serves no other purpose than that of presenting the narrative and of keeping it going. It is no longer the language of their exchanges, but of their reunion, the sacred language of a foundation and an oath. The teller shares it with them and among them. (Nancy, 1991: 43–4). Storytelling, sharing language, and myth-making is the offering that allows the horizon of community to appear: ‘That the work must be offered to communication means that it must in effect be offered, that is to say, presented, proposed, and abandoned on the common limit where [singularities] share one another’ (73). In storytelling (and Nancy uses the ‘foundational scene’ of a circle, and a male storyteller), singularities can experience the shared limit: foundational stories make community inoperative, as the distance between the story’s ontological claim is thrown back onto the experience of the singularity’s limit, and the possibility of the I’s death. Wanting to listen, hear, and tell, we are abandoned to the distance between the story and

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our I, but we lean in, move our heads into the circle, hovering in the space between the I and the communal story. To me, Nancy’s account of community speaks of continuous flows – of a leaning movement, of responsibility, of meanings. These I’s who are others – singularities constantly in negotiation, touching their limit – are provisional, temporal. Life flows – no point of standstill, definition, or grounding of identity in ontology is possible in this conception of improvisational community. In this chapter, this emphasis on the I’s who are others informs the discussion of art-making as improvisational flow. In the two art projects, everyday performance was the ground on which we built our communal art work: being unconsciously and consciously in spaces that we call home, but that have histories, dominant narratives, dominant ways of being seen. Our disabilities meant exclusion from some of the spaces we were investigating and inhabiting. The environment we chose was our Welsh village, surrounded by the green hills of a National Park. The exclusions we experienced worked on a variety of levels, from physical access to do with stairs, public transportation, or stamina, to imaginary access to do with patterns of usage, ownership of a locale’s imagination, and the use it is put to. Through performance, and, importantly, through mediation of those performances in public environments, we inscribed our right of access to these spaces, making our presences felt. The performance act became the performative act: a conscious inscription of difference into sedimented patterns of naturalized ‘law.’ With this, our work is not located within art therapy, changing ourselves, but within political labor, changing ourselves and our world. Our communal practice refused to be singularly authored, and this anti-romantic tactic links our work back to everyday practices of storytelling. Community, this impossible goal, is tactically erected as a place to momentarily speak from.1 With this chapter, I am offering a contemplation not (only) of a community of minds, but of cohabitation, embodiment and enworldedness as necessary aspects of thinking towards a coming community.

Local stories To speak about ‘community,’ I find it important to establish the ecology of the specific example of an intervention into the formation and articulation of community as a process. ‘Community’ emerges as many things in the following: as a national ideal, a marketing tool, an experience, a hope, and a problem.

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The village of Ystradgynlais, where all activities I am discussing here took place, is situated on the edges of the Brecon Beacons, a National Park in the middle of Wales. Ystradgynlais used to support itself through the mining industry, and the rolling hills surrounding it have been changed by Roman soldiers, Celtic inhabitants, sheep grazing, and now disused railway lines. The people supported by this land include a Welsh-speaking minority and a majority of English-speaking inhabitants. The language of Wales suffered under English imperialist policy, and has been rooted out by various historical practices, such as forbidding the language from being spoken in school and in public meetings. More recently, the language has been reintroduced into school curricula, and a culture war surrounds its problematic position in modern Wales. Many people live in Wales whose family origins might lie in Ireland, Italy, India, France, or elsewhere, and who might have settled in Wales during the Industrial Revolution, when Welsh ironworks provided jobs for many. Other people might include more recent incomers who have entered Wales as part of the counter-culture movement or as

Figure 6 ‘Earth Stories’ group at the old iron smelting works in Ystralyfera

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downshifters from the South of England. This last category of inhabitants is often and tellingly referred to as ‘white settlers’ by many Welsh who understand themselves as natives.2 Against an image of Wales as a country of anti-imperialistic segregationist politics stands the image of Wales perpetuated in tourist brochures. This image is the rural idyll, with bucolic pastoral characters such as sheep farmers, sheep dog owners, and craftspeople who make things with their hands out of wood and reed. All of these images, though, do not capture the reality for many of the people living in Ystradgynlais, and in particular the experiences of people hidden on the economic margin, the unemployed and the disabled. Both the fiercely national and the bucolic image rely on segregationist and exclusionary concepts of community, on a single vision that references historical origin and continuity. This kind of mobilization of ‘community’ is deeply suspect to feminists and others who wish to consider social change in conjunction with collective action. Thus Iris Marion Young critiques ‘community’ ideals when they become a desire for social wholeness and identification – a form of politics that relies on sameness, and which in turn erects exclusionary zones and borders (1990). Benedict Anderson, in The Imagined Community, sees the problem of national community and its seductiveness in a different light: here, ‘[I]t is imagined as a community, because, regardless of the actual inequality and exploitation that may prevail in each, the nation is always conceived as a deep, horizontal comradeship’ (1991: 5–7). But how can a community politics that keeps alive openness, provisionality, and respect for difference be mobilized? In order to address this question, I collaborated with fellow disabled people in Wales. We realized that to create affective and effective arts for social change, we needed to find points of entry into the representational canon, into the images and stories of Wales. If we wanted to affect images of mental health issues in our local rural environment, the terrain of landscape art was a good framework, since it is such a prevalent and legible genre in Welsh culture. It is for this reason that I first conceptualized the project under the name of Landscaping Women: I saw a structural affinity between art-historical arguments that found women to be the mute ground of landscape art, where nude female bodies were equated with so-called virgin soil, and disability’s invisible, yet structural relation to the labor-poor economy of Wales. Many disabled people in Wales became so due to their labor in coalmines: white finger vibration symptoms and lung diseases are common, as is arthritis. Depression and other mental health symptoms are

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also common in Wales, one of the poorest regions in Britain. Nationally and internationally, though, mental health issues in the countryside are marginalized – mental health has become increasingly focused upon as an urban problem, one associated with the rise of modernity’s social arrangements and alienations. Few of these realities of contemporary rural life find their way into the romanticized images of Wales. And, just as many people living in the village of Ystradgynlais do not recognize themselves in the images of their region presented on television, their presences and bodies are also invisible in the landscape of the National Park itself. In order to enter the Park you need capital: the main access is by car. But also, more subtly, access is regulated in other ways: taking to the outdoors, walking in the wild hills, is a middle-class leisure activity, requiring a certain cultural capital as well. It is framed by the literature of the walkers in the Lake District, of the romantic sublime, of solitude, and of communion with nature. TV images of the Brecon Beacons, for many the main access to their local landscape, emphasize a place set apart from the everyday, a place of Sunday TV programming and English voices, tweed and shepherds (a mythologized working-class occupation which seems far removed from the roots of mining activity that still pervades the stories of the village). Fishing, sheep husbandry, and farming form the mainstream images – and the visible reality of these occupations tend to be male-dominated. Many of the participants of the mental health self-help group were female, and they found their voices marginalized not only by disability and class, but also by gendered constructions. For the people I worked with, other obstacles presented themselves in terms of access to the Park: social security welfare checks do not easily allow for the bus fare for public transport ventures into the Park; for some of the older participants of the workshops, mobility was a problem. Also, their circumscribed activity of everyday life doesn’t lend itself to one-off outings. The self-help center is a place of routines, and therefore of safety: aspects of mental health issues that need to be taken into account in the design of any workshop. The answer to access was not to bring a bus onto the heath, but to find meaningful ways of structuring activity within the National Park and to find connections between the park and the everyday. In the first meetings within the group, we agreed that one of our prime objectives for the creation of art works was to reimage ourselves, to speak for us and for others about our lived reality of mental health as people living where we did. Everybody in the group had had significant mental health experiences and encounters with the mental

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health system. Life experiences included voice hearing, the diagnosis of schizophrenia, manic depression, anxiety disorders, and so on. Some had been hospitalized in their past, and knew first-hand the horror stories of some institutions. Many were on drug regimes. Some had prison experiences; others had been homeless. Amongst us were retired miners, factory workers, one teacher, and homemakers. For many of us, loneliness and the experience of the I as singular stood in tension with a way of life that romanticizes village life, communality and community. As we began our work together, we had to assert to each other again and again ‘you cannot know … you know,’ that double bind of singular beings and community that Nancy offers. In our initial meetings and discussions, over tea, we decided that we wanted to use the vocabulary that surrounded us in the media world, the vocabulary of land, myths, and history, both personal and national. These are the important, foundational stories of our environment, and we wanted to approach ownership of them – even though we were aware of their problematic nature. Our lives are not apart from these images,

Figure 7 Ystradgynlais Mental Health User Group participant, saying 'Hi!'

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and the desire to be seen mixed uneasily with the desire to use the images and narratives that shape the mediation of our world to ourselves. The initial idea of working in the mental health self-help center was, then, to combine elements of disability politics and story telling. We wanted to break the silence surrounding mental health issues, in particular in rural areas, but we wanted to present our experiences in an ambivalent way; not merely to stress the negative experiences, but to retain our dignity and pride. Negotiating the tensions and opportunities between the individual voice and a communal myth-making became central elements of the poetics we built together.

Methods: the ‘Lady of the Lake’ The focus of the first sets of workshops, in 2001, was the story of the ‘Lady of the Lake’. This story is centered on a lake high up in the hills of the Brecon Beacons, in an area of moors and high fens. The story mirrors similar myths in various British and international locations: a female fairy steps out of the waters, leaves her kingdom to marry a mortal and not fit in, or to marry a mortal not worthy of her; and then to vanish again, having transformed aspects of human experience. A local fish-and-chip shop displays the following summary of the Brecon Beacon’s ‘Lady of the Lake’ story, painted as part of a mural and written in flowery ‘heritage’ script on its walls: In the midst of beautiful mountain scenery, about 16 miles from here, is the lovely lake of Llyn y fan fach. Here, legend has it that a beautiful woman appeared to a poor shepherd boy who was so taken by her that he asked for her hand in marriage. She agreed, but only on condition that he wouldn’t strike her 3 times. However, he found cause to and she returned to the lake with her dowry of animals. Behind her were left 3 sons who became the famous doctors of Wales. (mural at the Bwyty West End Café, Llandovery) In the imagination of local people, the story of the ‘Lady of the Lake’ has, naturally, many more facets, subsets, versions, and events than the bare-bones story narrated on this local wall. In the self-help group, we found in particular that stories that emphasized the reasons for the violence of the husband on his fairy wife were of interest in many of the versions that mainly the women in the group knew and had selected to remember.

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In the workshops that followed, we used performance tableaux, rituals, creative writing methods, and spatial chorus work to create moments out of the legend’s connection with our lives. Through this legend work, we accessed a realm of political practice similar to the kind of practices that de Certeau calls ‘tactical,’ which undermine the ‘strategic’ – the central force, inscribing its laws legitimately. The strategic is forceful, dominant; it can lay down rules, generalize these, and make them work. The tactical is the work of the minor, the non-dominant: A tactic insinuates itself into the other’s place, fragmentarily, without taking it over in its entirety, without being able to keep it at a distance. (de Certeau, 1984: xix) De Certeau offers the distinction between the strategy and the tactic as a way of understanding the nature of resistance within the field of discourse. Resistance is not conceptualized as fully there, conscious, strategic, an organized political practice. Instead, de Certeau sees everyday practices as tactical interventions: he likens walking, shopping, talking, and so on, to acts that momentarily, locally, impact on power structures. An embodied knowledge of the street allows a way of living that negotiates the dictates of street grids, and the vision of social planning, abstraction, or metaphorization of life: by walking the street, the ‘soulless’ plan becomes a lived experience that could, potentially, open up a moment of difference. People get away with things: [V]ictories of the ‘weak’ over the ‘strong’ (whether the strength be that of powerful people or the violence of things or of an imposed order, etc.), clever tricks, knowing how to get away with things, ‘hunter’s cunning,’ maneuvers, polymorphic situations, joyful discoveries, poetic as well as warlike. (de Certeau, 1984: xix) De Certeau’s work on the politics and poetics of the everyday outlines how Foucault’s resistances can function in practice. His work shows how life deals with rules and how these rules can only be bound by temporality given the force of life running through them, leavening their strength. Legends and myths, the energies expended on ‘story-telling’ a location and thereby making it ‘human,’ play an important part in this

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interaction between strategies and tactics. The absolute rule of ‘history’ as a monolithic discourse, one that has naturalized itself into truth, is put into question by the power of the minor story, the legend. De Certeau writes: ‘[W]hereas historiography recounts in the past tense the strategies of instituted powers, these “fabulous” stories offer their audience a repertory of tactics for future use’ (1984: 23). De Certeau sees hollow places in the everyday, moments of layering that become accessible in the activity of the everyday, that make the everyday habitable by creating ‘depth’ and ‘space,’ spatial metaphors that create ‘habitation’ – a space where one can be, rather than having to be in one way only. Legends have an important function in this desire to make a space out of a place, making it human-shaped, habitable, weaving it into the practices of the everyday. They help to create a phenomenological, lived experience of a location: It is through the opportunity they offer to store rich silences and wordless stories, or rather through their capacity to create cellars and garrets everywhere, that local legends permit exits, ways of going out and coming back in, and thus habitable spaces. (de Certeau, 1984: 106) Legends are seen here as ‘exits:’ as Spielraum, room to play, offering the potential to not be caught in an endless, dominant signification. They allow for a place to be seen differently. This ability of legends to open up spaces for difference was used in the process of ‘Earth Stories’: using the make-believe of the legend allowed our group to make-believe about our own situation, and therefore to allow our imagination to soar. Ultimately, this strategy allowed us to see ourselves not fixed in discourse, but to experience discourse as a Spielraum. And yet, this ‘freedom’ also highlighted again and again the distance between myth and the limited I, the inoperable nature of storytelling that haunts our gatherings. De Certeau links this ability of stories and their historical, layered ghosting of a specific location to tactics evading the fixed knowledges of Foucault’s Panopticon: There is no place that is not haunted by many different spirits hidden there in silence, spirits one can ‘invoke’ or not. Haunted places are the only ones people can live in, and this inverts the schema of the Panopticon. (1984: 108)

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These local stories create forms of knowledge that are minor, local, momentarily evoked, in tension with the ‘public’: ‘this is a sort of knowledge that remains silent. Only hints of what is known but unrevealed are passed on “just between you and me”’ (de Certeau, 1984: 108). These links between knowledge and minor discourses and between practice and transformatory repetition became graspable in the workshops. Every time we joke about the woman’s perception of the strikes her husband gives her, the perspective shifts momentarily from the ‘inevitable’ difference between human and fairy to gender issues: traditional tellings of the story use the point-of-view of the young man who wants to wed the lovely lady he saw in the lake while he was herding his sheep. Every time we transpose our local environment into the gothic genre, we see our world with different eyes, and the ‘normal’ loses its hold temporarily. Nancy’s community of I’s who are others, who journey together to see themselves shifting, becoming, and yet are part of a common place, emerges in this improvisatory play. Becoming other, stepping outside the rules of place and space, means being both more and more fully the I’s we already are: our imagination and ways of being allow for more than one facet of subject position, but we are always bound back to the conditions of singularity, subjectivity, imagination, and context that we live in. We can recognize the strangenesses and familiarities in each other, the moment where the story and the I are cast asunder, where the experience of the limit exiles us from full presence in the myth we make. But instead of retreating to disappointed selves, we can see otherness within ourselves, and we can begin to build community that is both located in specific conditions and yet open to difference. The tactical uses of holding open the multiplicity of the I are not without serious discomfort, though: no place of rest and certainty is available.3 In our projects, all of us weld our identities in new provisional alignments: Welsh, English, German, farmer, miner, unemployed, academic, artist, writer, performer, family member, patient, victim, survivor, client, and many more. When we work together, paying careful heed to the multiple identities means that we strive to hold open the unknown: a sense of difference within the known, within the warm atmosphere of our meetings. Listening to the poetry we write, many of these singularities emerge as multiple, in new constellation, as we trust ourselves to share. The sharing is the core part of this relation: not the content of what is shared, or the reception of the shared content and its understanding. The act of leaning anchors our circle. Nancy’s leaning towards community allows me to think of these differences and otherings,

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as well as those that swing among us unsaid, unwritten, and as yet unthought, as potentialities that feed our community, and question its boundaries and definitions. De Certeau offers a phenomenology of resistance: of the embodiment of living within structures, opening up spaces for people to live in. The political hope I hold is that the accumulation of layers, distancing us from the ‘dominant’ story of our world and its relations, and from our story of our self, doesn’t just alienate us, but opens up Nancy’s I’s as others. This offers up a reservoir of richness that binds us with different ties to one another and to our locality. I believe that a stronger grasp of the potential of group communication and a sense of pride in the ‘deep’ location surrounding us can awaken social processes and political consciousness. Art-making played a significant part in this transformatory process: the workshops were process-based, but over a period of time, we shaped aspects of our work together into a product that could leave the circle of the self-help center and travel into the wider social world. Early on in one workshop, we created a short performance piece about the ‘Lady of the Lake,’ consisting of a number of tableaux and transitions, and a narrative recited as a choral, with individual voices taking on different ‘characters.’ The group showed great pride in their creation after a number of run-throughs, and the moving together, creating spaces and openings for one another, set a new tone of intimacy and openness in the following workshops. As we talked about the experience, it became clear that, while we felt a desire to show our work, we acknowledged a multitude of problems in bringing the performance ‘live’ to local events. And thus, our version of the ‘Lady of the Lake’ traveled to the outside as a video, combining spoken poetry and visuals, recording us in the countryside we were talking about. This provided a very useful vehicle for allowing our imaginations to soar, and our writing and our stories became wilder, as we all realized that a different set of rules (strategies) governs the universe of video-making when compared with live art. Embodiment as a reservoir and repetition of knowledge played an interesting part in the way that memories became retrievable, and entered from the private into the social: when we were exploring the connection between our childhood memories and the story, most of us pointed to moments of outside physical activity as a pivotal point in our memories: walking in a group of school children, standing by a gate in the garden, playing in a field. Meditating on the myth brought many of the participants to recall the feeling of grass under their fingers, or their emotions as they sat amongst rocks. We discussed how video

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Figure 8 Still from ‘Earth Stories’ video

would allow us to show intimate perspectives, including the touch of hand on stone, in close-up. Sensations usually characterized as ‘minor’ or ‘private’ took on a different charge as we gave ourselves permission to focus on our way of telling, and how it felt right to us. Soon our workshops moved outside, from the living room of the community center to the small garden. We collected sensations, feelings, stories, moments, images and scenes. I acted as facilitator and scribe: recording with whatever means possible what we hoarded, moderating discussions that edited our collection of everyday practices and local re-tellings down to manageable size. Our poems were all communal: we agreed on a theme to write about, and then we all produced four lines, with sometimes only single words in each line. Then we read them out to each other. And finally read them communally: in a circle, everybody reading their first line, then as the circle came round again the second one. In this way, a communal theme created a coherence in the poem, but one that was beyond the individual author. In these poetry rounds, the I’s do not share their singularity, but we lean in, from our own singularities into a rhythm, a round: Giant river boulders, round hollows ground into them, by the rushing river twirling into deep dark pools. Branches bent, fingers grip, fear flings me into the hole. Grass bends into the earth.

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In the craggy rocks, an opening to an underground tunnel. I am frightened of the darkness. The sense of not knowing where will it lead to, how long will it go on for. Suddenly there is light ahead – a cave in the mountainside. Deliver me from the fear of darkness, lady of the lake. The lady of the lake appears in the garden, and flies to the moon and the stars, and promises good times will appear once more. (from ‘Earth Stories’ videopoem)

Anxieties: ‘Sleeping Giants’ If ‘Earth Stories’ was our summer story, our celebration, and our engagement with mainstream aesthetics, the next video we created, ‘Sleeping Giants,’ was our winter work. It is harsher; its production is even further removed from ‘the professional’ as we took the camera with us all the time, with different videographers amongst us capturing the shots. The videopoem deals with another local story: as you move towards Ystradgynlais and through it, you can see a hill above the village. The outline of the hill is like a lying man, and the formation is called the ‘Sleeping Giant.’ I wish I could lie still For a long long time like you do Is the sleeping giant going to wake up? Is the sleeping giant going to wake up? Head in the clouds Stone body tilting feet first down into the earth (From ‘Sleeping Giants’ videopoem) This ‘mountain man’ is not visible from any static point – the best views can only be gained by traveling in a car. The route follows the closed and disused line of the canal that used to transport coal from the Beacons and Ystradgynlais to the iron works. And this connection between the giant and the coal, the hill and the mine workings, the cave, the weight of history, the lost grandeur of Welsh economic power, is the back-story of our second videopoem. In it, we search: our original idea was anchored in the detective genre, searching compulsively for

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the Giant. Compulsion disorders and anxiety is something many of us in the group share, and we saw here a way of again transforming individual mental habits into an artistic vision. Find a deep cave to the heart of the giant It is dark but my eyes adjust Two small points of light in the darkness I can see the light through the crevices of his fingers Heart beating faster, I could feel the warmth and the need to get closer to the giant’s heart. The giant’s heart is a cave of stalagmites, an unchartered country. (from ‘Sleeping Giants’ videopoem) By reading de Certeau, I help develop my sense of the communal importance of our art-making, I find companionship that helps to make sense of why I think there’s juice here, in these twisted tales. I can make sense of the empowerment, the euphoria of re-imaging ourselves. But, of course, the act of labor itself is always visible; the tactic remains momentary, minor, a forced insertion. Performance substitutes, cites, re-creates. However, performance does not offer an easy substitute; it offers a labored one. To quote Joseph Roach, ‘a stand-in for an elusive entity that it is not but that it must vainly aspire both to embody and to replace’ (1996: 3). This Sleeping Giant is not mythical, ritualistic, always-already-there, outside history. In our practice, the Giant becomes discursive, historically contingent, an oratorical procedure. By recounting when we saw him, we historicize him, binding his presence to the time of our lives – bridging distances between I’s and myths. With this, our Giant as myth, retold, offers us a process of community communication. By destabilizing the founding story, we fight for entry into the realm where new meaning can be founded at the same time as we continue to be suspicious of founding stories and their exclusionary effects. And it is our loss of certainty, our anxiety, that allows for new community to come into being, in being-together, and in joint exploration: Here the mythic hero – and the heroic myth – interrupts his pose and his epic. He tells the truth: that he is not a hero, not even, or especially not, the hero of writing or literature, and that there is no hero, there is no figure who alone assumes and presents the heroism of the life and death of commonly singular beings. He tells the truth of the interruption of his myth, the truth of the interruption of all

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founding speeches, of all creative and poietic speech, of speech that schematizes a world and that fictions an origin and an end. He says, therefore, that foundation, poiesis and scheme are always offered, endlessly, to each and all, to the community, to the absence of communion through which we communicate and through which we communicate to each other not the meaning of community, but an infinite reserve of common and singular meanings. (Nancy, 1991: 79, original emphasis) When we as a group engage our local myths, we do so with an agenda and a tactical sense. We substitute the dominant myth, but the act of substitution creates a new anxiety and liminality, new impossible desires for wholeness and plentitude: a traumatics of political art labor. The mythological fullness of mythology is not available to us. Our myth is a substitute myth, hewn out of dominant images as a response to them. As I am writing this, the metaphor of the coal mine keeps inserting itself into my textual fantasy, but I have to resist: the bodily and mental trauma of the work deep in the mountain, finding dirt that fuels machines, doesn’t map onto the kind of myth excavation that searches for material to reimagine mental health. But the origins of the fantasy are clear: an investment in the local, in the everyday, in repetition, are at the heart of both mining and our art-making. The cave of the heart becomes a space of doublings and hauntings.

Conclusion: community art In ‘Earth Stories’ and ‘Sleeping Giants’ we translate, and call for community flexibility, multi-lingual, multi-embodied access. We transpose perceptual or cognitive difference into sources of artistic endeavor. Our communal practice that refuses to be singularly authored binds our work back to everyday practices of storytelling. And ultimately, our work also comes back to the traditional places of storytelling. Eventually, both ‘Earth Stories’ and ‘Sleeping Giants’ had very successful exhibition records, traveling to the British National Film Theatre (as part of different years of the National Disability Film Festival), and to many other international film festivals, conferences, and disability culture meetings. But these circuits were quite far removed from the realities of the Welsh village and the everyday funding and acceptance struggles of a mental health self-help organization in its own locality. More importantly, then, our videos played and continue to play locally.

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The Mental Health Self-Help Center uses the videos as part of its regular stand at the local markets, where the stand functions to raise awareness of the center and its function in the community. The videos have also helped the center to raise funds: they provide marketing material and give an insight into the abilities, depth, and creativity of the people using the center. In all of these marketplaces, where information is exchanged and public visibility tested, our re-visions of ourselves tactically undermine stereotypes of disability. In the video interviews that accompany the videopoem about the ‘Lady of the Lake,’ two participants say this about their experiences in the project: When we began this project, I was very apprehensive about starting it. I’ve always written, but it was always personal, private to me. But I never ever dreamed that anything like this could have come out of it. Because people with a mental health problem, there is such a stigma attached to it. It is like people with a mental health problem are non-achievers, but that’s not true to all. Because what we achieve in doing this project is more that I could ever dreamed of doing! Being part of this project has been a revelation. I worked in a group, which wasn’t something I was used to doing when I had my own mental distress, disability. I always had the feeling that something good could come out of something that at the time was so very bad and black and terrible. But I know that if we go really deep inside ourselves, we can reach a creative point and that is what working in this group has revealed to me. (video transcript) In the processes of the project, its products and in the use we make of these products in the locality, the impossible goal of community emerges as a provisional place from which to speak. Working and re-working the connections between the everyday, the artistic, the land and the people, the village and the mental health self-help group, images of mental health and conceptual or temporal difference, plentitude and desire, we again and again start to knit places to live in, and we do so in beingtogether. We lean, connecting I’s and others, singular story and myth. The last words of this chapter, then, come from our group rather than from one single voice:

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This is not a giant of despair, this is a giant of hope I saw him after the snowfall silent and frozen in time His cheek was wet He lay there like a monster, quiet and still I thought if he yawned, his arms would reach the sky

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Part 2 Rhizomes/Connections

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4 Towards a Rhizomatic Model of Disability

The first aspect of the haptic, smooth space of close-vision is that its orientations, landmarks and linkages are in continuous variation; it operates step by step … one never sees from a distance in a space of this kind, nor does one see it from a distance; one is never ‘in front of,’ any more than one is ‘in’ … Orientations are not constant … There is no visual mode for points of reference that would make them interchangeable and unite them in an inertial class assignable to an immobile outside observer. On the contrary, they are tied to any number of observers … nomads entertaining tactile relations among themselves. (Deleuze and Guattari, A Thousand Plateaus, 493) What is the lived experience of disability? This chapter addresses this question, a central one in disability studies, but shifts the terrain of the question, slants it to point to a concept. What is the lived experience of disability? Between disability and disability, essential identities become mobile, and words and bodies touch each other. Many disabled people do not see themselves as part of a movement or a group of movements, as part of a minority formation, or even a civil rights group. And even those who do, who accede to group identity, often struggle with the contradiction that pertains to all group identifications: to be oneself, singular, and to be part of a group, alike. In this chapter, I wish to elucidate the lived experience of living in labels, by bringing together Deleuzoguattarian thought with poetry of disability.1 A new model of disability opens up in the textual assembly of this writing. This model queries its own character as model, since its emergence is singular, specific and momentary. By bringing this instability 91

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and temporality to thoughts about models, Deleuzoguattarian politics helps to open up the terrain of thoughts in the interstices of theory and lived experience. As part of this strategy, this chapter, like other parts of this book, incorporates not only discursive writing, but also poetic forms as part of its argumentative structure. At the core of the argument is the concept of the haptic, the touch, as a way of thinking through different positions and bringing them in contact with one another: the one, the many, disability, disability, experience, concept. This entails that this chapter makes meaning with Deleuze and Guattari. It is not about their work,2 but about the ways that disabled ways of living can be articulated with the tools these philosophers have given us. Much of the vocabulary and methodology of the article derives from the toolbox Deleuze and Guattari created with A Thousand Plateaus.3 Concepts such as the rhizome, haptic space, de- and reterritorialization will appear throughout. These terms are not easily defined: it is their vibrational power that makes them useful to the philosopher (Deleuze) and the psychoanalyst (Guattari). These terms are not fixed items or categories, but ways of thinking, and that is how they are employed here: We are tired of trees. We should stop believing in trees, roots and radicles. They’ve made us suffer too much. All of arborescent culture is founded on them, from biology to linguistics. (Deleuze and Guattari, 1987: 15) So, to de-think trees, Deleuze and Guattari offer rhizomes. The rhizome in biology is a stem that grows horizontally and shallowly underground, with plants appearing out of it at various points at the surface. It can be a reproduction mechanism. In Deleuzoguattarian philosophy, the rhizome has many of the features of a biological one, but it is also a plant that allows a reader-operator to operate on existing terms by thinking them in non-dialectic connection, in a vibrational move that oscillates and dances. This means that different states/definitions are in contiguity, one plant is both singular and communal, stems, roots, and shoots aren’t easily distinguished, or, to shift metaphors, one country abuts another. In Deleuzoguattarian writing, haptic smooth space speaks about the tactile relations between different spaces and about a continuity of spatial arrangement. The haptic smooth space stands in a non-binary relation with striated, ordered space: one moves into the other, becomes the other. Desiring machines refer to the productivity of thought, how

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things (thoughts, concepts, material, the world) assemble towards something new, towards something emerging. Even with these rudimentary, allusive descriptions that try to summarize concepts that only ever appear in highly specific instances in A Thousand Plateaus, it is possible to see that the Deleuzoguattarian toolbox allows for thoughts to be pried open, for familiar things to be disassociated, and unfamiliar things brought into contact with one another. Deleuze and Guattari do not offer a philosophy of fixing, categorizing, or ordering things, no recipe of how to think about things, but a philosophy that encourages readers to apply a style of thought to new areas. When the toolbox is in action, it creates machines that can open up conventional ways of thinking a pretty ordinary word, disability. A reader-operator of Deleuzoguattarian texts refuses to keep binaries in their places, and instead subverts high and low, oppositions, balanced views, not by inverting them, but by keeping them in resonance, vibration, or touch. This chapter moves toward vibration: toward poetry, both in its written and spoken form. It uses experiences of the haptic, the experience of touch (of paper, tongue, breath, skin, visual media, eyes following lines of text, mouse, cursor) to explore a tactility of disability, a rhizomatic model of disability that can hold a wide variety of experiences and structured positions in moments of precarious productive imbalance. It makes sense to bring Deleuzoguattarian concepts to poetry.4 It is the desire of these philosophical texts to become operant, to operate upon something, to become assemblages with other activities (such as poetry-making). The concrete images of schizoanalysis5 in A Thousand Plateaus only make sense when they are applied, when the rhizome, for instance, jumps off the pages and into the reader-operator’s thoughts about the current assembly that occupies that reader’s mind and needs operational push. The rhizome, the haptic space, the map, and the trace, all these concepts that Deleuze and Guattari delineate in their book, are not dicta, but functions, they are desiring machines that grind things together. The point is to create unexpected touches (or, to use a more Deleuzoguattarian language, surfaces, multiplicity, and simultaneity). I am with Alice van der Klei, who ends her essay on the relationships between hypertext literary production and the rhizome with this paragraph: Why the rhizome? Because I have seen people as varied as literary theorists, philosophy and cinema critics, disk jockeys, visual artists and even a dancer, in Canada, in The Netherlands, and on the Net,

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being inspired by Deleuze. Coincidentally, in Dutch, ‘De leuzen’ is a saying or a slogan. In a redefinition of hierarchy, in a video clipping, a fragmentation or a sampling textuality, I would suggest using modes of textuality that cross borders like a ‘leuzen,’ or a slogan. (2002: 54) So in this writing, I touch words and lives to each other, engage in the touch play of Deleuzoguattarian poetics, which wish something to become mobile in the reader-operator. Let the languages cross borders and dance.

Rhizomatic disability Disability is the realm I traverse with a strong sense of the haptic, the touching of concepts and bodies. Disability is a slippery word that holds nightshade and sunlight, a concept that grows above ground, in our disability culture politics, and below, in the privacy of the disarticulation of pain, of isolation, of the lived reality of social and physical oppression: Principles of connection and heterogeneity: any point of a rhizome can be connected to anything other, and must be. This is very different from the tree or root, which plots a point, fixes an order. … [N]ot every trait in a rhizome is necessarily linked to a linguistic feature: semiotic chains of every nature are connected to very diverse modes of coding (biological, political, economic, etc.) that bring into play not only different regimes of signs but also states of things of differing status. (Deleuze and Guattari, 1987: 7) One of the central struggles in disability studies concerns models of disability, a somewhat fixed generic form by now, and much discussed in the social science and humanities literature on disability. In these models, disability activism and, later, disability studies, plumb the meaning of the word disability, and put it into play with the way that disability is culturally and socially grasped. In the social model, disability is a category that is extrinsic to specific bodily being: a wheelchair user becomes disabled when she encounters a stairwell. And she can embrace the label as a sign of shared oppression, identification across a social position.6

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In the medical model, disability is intrinsic: this body is disabled, faulty, in need (and potentially able to be) cured, managed, rehabilitated. I propose a rhizomatic model of disability, already a model, slanted, quotationed, rather than a mode of experience. This is a model in which the extrinsic and intrinsic mix and merge, as they do in my own physical and psychical being when I am in pain, and cannot walk up the stairs, and wish for a painkiller, and take pride in my difference (what other choice do I have?), and feel unable to speak of the nature of my discomfort, cannot find the words, but find comfort in the company of others whose pain might be different, but who somehow feel simpatico. The rhizomes in A Thousand Plateaus connect at any point of their surface, assemble into new life forms, run along the surface of the earth, and just beneath it, mixing below and above, refusing fixed differentiation (and, of course, the schizoanalytic rhizome is not the biological rhizome, but neither is it ‘not it’: the two, concrete and abstract, are in productive tension). To me, in my life reality, thinking about my disability as a rhizomatic formation is useful and productive. And of course Deleuzoguattarian politics are specific, momentary, individual, and not reproducible. And yet I feel that there is currency in this rhizomatic model for more than just me and my personal imaginary. Without knowing what specific assemblages will emerge for any one readeroperator, a rhizomatic model allows the coexistence of ‘not only different regimes of signs but also states of things of differing status’ (Deleuze and Guattari, 1987: 7) – and that last part of the quote, things of differing status, resonates with my lived experience of disability as one that lives in a simultaneity of codes, devalued and valued at the same time. The rhizomatic model of disability produces an abundance of meanings that do not juxtapose pain and pleasure or pride and shame, but allow for an immanent transformation, a coming into being of a state of life in this world, one that is constantly shifting and productive of new subject/individual positions. But, like all Deleuzoguattarian concepts, this rhizomatic model of disability is only useful when used. It cannot have truth status, for it is empty of specific meaning. It is a movement rather than a definition. Thus, the rhizomatic model of disability is not a new model. If it were, we would be back at a recipe, a fixed state. Instead, it is radically singular, flexing its membranes to touch words (disabled, pain), experiences (pain, joy) and other concrete objects in the world (stairs, pills, people, the ground, a table around which we are sharing our libations).

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To give an example: the conceptual character of pain is filled with markers of reality, with existence on multiple levels, with background/ foreground shifts, with mobility that ‘can be connected to anything other, and must be’ (Deleuze and Guattari, 1987: 7). This is not the same as saying ‘pain shades the world,’ as if pain was a paintwash over a person’s experience. I posit that the experience of pain can resonate with a rhizomatic conception of multiple simultaneous gazes intertwining. In one of Karen Fiser’s poems, a painwash does extend over the world, but its monochrome is undone quickly. Here pain is not the solidly negative experience it so often is in a lot of work by nondisabled (and disabled) people. Pain, a halt in speech, instead becomes a moment where attention can be focused; where a single moment opens up, blooms, and sensations fill a space. Here is one of the stanzas of ‘Still Life with Open Window’: Time spent in pain exists absolutely, without structure, demarcation or relief, it is all one color, like winter’s rainy sfumato inscriptions on gray. Meanwhile, the other, inner life goes on, unwitnessed, the shadow a tree makes on the wall, rippling like water. (Fiser, 2003: 36) There are many colors in the words, different shapes the words make in my mind, and they all echo with and rewrite the meaning of sfumato, smoky, layered: there is a richness here, nuanced, not mono-colored, but delicately smeared, ‘rippling like water.’ The poem moves precisely from ‘all one color’ to the specific, small instances of change that are all held within the moment of pain. The word meanwhile speaks to me of this rhizomatic simultaneity, not a balance so much as a productive tension. The last lines of the poem are: They will have to be connected by what flowers within the moments themselves. Each moment must expand to hold this infinite, unexpected joy. (Fiser, 2003: 36) In this poem, formal qualities such as the rhythm of the words mitigate gently against a dissolve, a static absence of sensation. The formal calmly negates the singularity that many people think of as ‘constant pain,’ but without a facile celebration of richness. Pain is unspeakable, maybe, but very much communicable in disability culture poetry,

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where it can open up nuances and surfaces, clasp meanings together, and allow different textures to coexist. In this way of thinking pain with a Deleuzoguattarian toolbox, a thought, a movement, or a state can code-switch, move simultaneously on different tracks, one ‘with pain’ (as in, ‘in pain’), the other ‘with Pain,’ as a companion, an observer onto the self. Tactility governs my sense of the word disabled. In disability culture, we fit the label to ourselves like a velvet glove, like smooth plastic handles, like a ripped battle flag, like a gaping hospital gown that transforms into white lace when we shimmy. You can hear what I am doing here: exploring the affective registers of disability metaphors, their haptic potential. We can find distance between the word and ourselves. Like many body theorists, Maurice Merleau-Ponty uses disabled people as case studies to unravel how humans inhabit their bodies and minds. He writes about the blind tailor to whom needle and scissors are natural extensions, integrated into a bodily schema. Is the lived experience denying the word disability? Surely not, for as soon as that same blind tailor engages in another life activity, goes to a party, for instance, he will find the word lobbed back at him in its multiple forms: cripple, invalid, blind beggar, helpless… Instead of opposing the real-life experience of fully adapted disabled people and the (negative) connotations of disability as a social experience, a rhizomatic approach can let these tensions build, can touch one to the other, can see the multiplicity of experience and thought that opens up in the touching. Rhizomatic disability emerges in the perspectival, in a fluid realm: ‘… nomads entertaining tactile relations among themselves …’ (Deleuze and Guattari, 1987: 493).

Disability/poetry Disability is a strange label (like most words in identity politics: woman, black, queer, etc.). It adheres to individual bodies and to a social scene, to a structural position as well as an embodied, lived experience. And yet, it describes nothing shared: no one form of embodiment or orientation to the world, no origin story, no diasporic experience – not even this myth of shared social oppression, not really. Disability experiences are individual. They are often lonely. They happen in doctors’ and psychiatrists’ offices, in playgrounds, in staring encounters in the street, in embarrassing moments of silence in conversations. Disability is an individuating experience, one in which difference, in its many different forms, becomes experiential as a category function: NOT

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YOU. You cannot play like this. You cannot walk here. You will hurt yourself if you join them. You will be separate. Disability and (nonitalicized, non-slanted) disability are both lyrical: individuating, parsing, a cut in the word, in the flesh, a cut in the social field. Unless disability studies scholars and artists begin to embrace a more poetic concept of this word, this label, disability, the word will leave many with a cocked, questioning head, an ear reaching outwards, a wonder at what we are doing. What is disability studies? How can we in our heterogeneity and our culturally devalued forms of embodiment communicate what we do, when what we do is always already on the downward slope of that cocked head? Many disability culture artists show the cut that the signifier disabled executes on word and world. The cut is made politically, socially, culturally, individually. Disability culture poetry explores the rules of these games that structure those cuts and their effects. These cuts only get more complicated. When Lynn Manning speaks in ‘The Magic Wand’ about the tensions between being seen as a blind man and a black man, and the different aggregates of expectation that adhere to these different perspectives, he parses multiple cuts in the cultural scenes in which he lives: I whip out my folded cane and change from black man to blind man with a flick of my wrist. It is a profound metamorphosis – … From sociopathic gangbanger with death for eyes to all-seeing soul with saintly spirit; … From welfare-rich pimp to disability-rich gimp; And from ‘white man’s burden’ to every man’s burden. … My final form is never of my choosing; I only wield the wand; You are the magicians. (1997: 165) Manning throws the violence of these cuts back onto his observers, making the force of representation tactile. The transformation wrought

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by perspective is violent and productive. I read it as a rhizomatic structure, a vibrational moment in which identities are neither essentialized nor compounded, instead, they are in tactile relation with each other. To view this poem through a rhizomatic structure allows me to step away from understanding racist and ableist discourses as double discrimination, and allows me instead to see the interpenetration of the two discourses, their intersecting modality. They are productive together, producing strata of discrimination not in an additive mode, but through interlocking mechanisms that require the activity of articulation, the magic of instantiation by an active audience. The moment wields the wand: the historic implications of race and disability discourses in each other perform their new instantiation when ‘you are the magician.’ Most poetry that might be called disability culture poetry is not often understood as formally innovative.7 But poetry and disability become machines together. The rhizomatic model of disability allows me to think of words as productive machines, holding simultaneity, tension, and agency. In the following section, I explore the exciting borders of ways of coming to presence in words, the formal play with wordedness that surrounds the categorical nature of words. Disability culture poems become rhizomatic assemblages, bringing familiar things into unfamiliar constellations. I am looking for these moments: YOU. NOT YOU. Many in the disability civil rights community know Neil Marcus’s poem ‘Disabled Country’ (1996). Written in the 1980s, it was first published in 1996 in the New Sun Newspaper, but had been circulating for a while, and has been reprinted many times and on multiple websites. Its home is not in poetry magazines and journals, but in the disability culture movement. If there was a country called disabled, I would be from there. I live disabled culture, eat disabled food, make disabled love, cry disabled tears, climb disabled mountains and tell disabled stories. If there was a country called disabled, I would say she has immigrants that come to her from as far back as time remembers. If there was a country called disabled, then I am one of its citizens.

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I came there at age 8. I tried to leave. Was encouraged by doctors to leave. I tried to surgically remove myself from disabled country but found myself, in the end, staying and living there. If there was a country called disabled, I would always have to remind myself that I came from there. I often want to forget. I would have to remember…to remember. In my life’s journey I am making myself At home in my country. The poem charts a lyrical exploration, a space-making, but one that veers into the absurd with its juxtaposition between the word or concept disabled and multiple subjects not usually in tactile relations with the experience of disability or the word disabled. Tears, food, love, all become qualified by the word and the lived experience of disabled (and disabled), all are called into an experience of an I: they are part of a home that is being made. The word/the experience of disabled/disabled gains extension. It intrudes and extrudes, shivers over other words. This country is both besieged and danced into life. The movement of the poem is predicated on an observer gaining new vantage points on words as objects with adjectives, and on world things as perspectival, relational, defined by the user’s being as much as by their position within the landscape. To embrace a nomadic view of contingency in relation to food, love, tears, and mountains: we travel, our steps shuffle, we move, and the world changes. Disability marks the texture of the words, declines them into something non-natural, and marks imaginary landscapes and actions that can be shaded by different experiences. Tensile strength pulls on the sentence, swings and hovers on the page and echoes in the mouth, not swallowed, not fully owned. In Neil’s enumeration of a disabled life, the words mark their own excess, sound out the silly, the tired, the sad, the funny side of that with which we identify ourselves: those pesky words. These words are also clichés: word markers of life events that are normate to most people. But not to many disabled people, and one of the powers of Neil’s poem is the distance between cliché and disabled lived experiences, where love, food, country, immigration, travel are not at all normal, or non-disabled. Neil’s poem becomes a desiring machine in

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which words leave their striated spaces of origin and touch in a smooth place that allows for new configurations: disabled country.

Communal performance With the word disability, a poem always already enters a terrain marked by interdependence. Named, categorized, structured in the social model or in the medical model of disability, the use of the word lifts a poem out of ‘the natural language’ of the individual into the border realm where individuality emerges from the structures of cultural shaping. And yet there is a wobble here, a category confusion. Who thinks of themselves as disabled when alone – but who does not think of themselves (on occasion) as in pain, in isolation, different, shaking, creaking, confused, tired? To slip from one to the other, to allow oneself to occupy both spaces: that is the crip dance. Make one into the other, the other into the first one. We (this group so heterogeneous in experience, identity formation, allegiance, or medical labeling) are not malingerers, fakes, of unclear provenance, unspecified or unknown. But the uncertainty inherent in the political use of the word disabled easily gives rise to a deterritorialization that needs to be reclaimed, reterritorialized strategically, but not essentially. Disabled people do not need to be known by medical labels, but need to find lift in fixity, un-do fixity and yet acknowledge the reality of immobilization. How can the re- and deterritorialization stay together, at the same time? Disability becomes a sign, a camouflage, a coloring, a flag, and a tool that creates a rhizomatic extension with lived experience: How could movements of deterritorialization and processes of reterritorialization not be relative, always connected, caught up in one another? The orchid deterritorializes by forming an image, a tracing of a wasp; but the wasp reterritorializes on that image. The wasp is nevertheless deterritorialized, becoming a piece in the orchid’s reproductive apparatus. But it reterritorializes the orchid by transporting its pollen. Wasp and orchid, as heterogeneous elements, form a rhizome. It could be said that the orchid imitates the wasp, reproducing the image in a signifying fashion (mimesis, mimicry, lure, etc.). (Deleuze and Guattari, 1987: 11) I/Not I: a dance around the word disability to create a new world. But one has to mimic being ‘disabled,’ to slip from one level to the next. I have to arrange my features to fit the bill, to the definitions that multiply

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depending on context and the assemblage of the moment: WHO (World Heath Organization), ADA (Americans with Disabilities Act), limit cases, diagnosis denied, and prescription medicine. Interdependence is a word with resonance in disability culture circles, where the self-reliant individual is often out of reach, and self-reliance’s ableist features discernable. So in my recent poetry performance work, which is to me always critical work, I have become interested in what happens when the illusion of poetic loneliness is given up, this romantic veil is ripped, and poetry emerges instead in the lean against familiar words, in the interplay of voices, and in communal effort. What happens to the lyrical I in collaborative work? How do the boundaries of individual self, sound and utterance, structural positioning and lyric flight break productively in communal poetry? Writings on the history of community formation around poetry can help me to set up what happens in the remainder of this chapter, touching a moment in the history of poetry to the concept world of Deleuze and Guattari. This touch is a vibrational moment: something from an alien context constellates, momentarily, to operate with something else. Mary Louise Kete (2000) writes about nineteenth-century American popular poetry and gifting circles, and rehabilitates functions of poetry often disavowed in the academic poetry machine. She traces how sentimental poetics emerge out of collaboration, operating in an economy of sympathy – the exchange and circulation of affection – in the formation of community. A circulation of affection, with all its sentimental trimmings, all its affect-laden economies, shapes my reception and production of disability culture work. Deleuze and Guattari write, ‘the rhizome is the anti-genealogy’ (1987: 23). There is no necessary family resemblance for disabled people, we mostly have to make our families ourselves, choose our community. Often, there is no patrilinear descent, no matriarch, and no heteronormative narrative that duplicates itself into the future. To call for a ritual of non-essential, strategic disability community is a rhizomatic act: to put out feelers. But my agenda with this poem/prose-poem/videopoem below rests not only with affection and community, but also with the loneliness of having nothing but old words with which to play. Deleuze and Guattari discuss minor literature, writing that holds itself as constitutive of an identity only insofar as that identity is inarticulable in the realm of the major. Minor literature does not speak for a constituted minority. It does not hold onto one set of experiences. Instead,

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minor literature stages the encounter of differential within dominant forms of expression, articulated in the act of writing. This perspective on the minor shapes my reception of Neil’s poem, with its deterritorialized nouns, and frames my work on the poem below. Whose words are spoken, who is speaking in old languages, dances in familiar registers? Minor literature, Deleuze and Guattari write, embraces ‘a willed poverty, pushing deterritorialization to such an extreme that nothing remains but intensities’ (1986: 19). In my understanding of minor writing, words become staging posts: they do not signify a transparent emotion, but instead hold traces of an oppositional affect, a struggle at the site of articulation. My poem below, ‘disabled lilacs’ (2008), and its declinations that follow, have their roots in my work on Neil’s Disabled Country and with Deleuze and Guattari, in thoughts about affective community and the pain of deterritorialization, in the touch with traditions, and in the joy of play that the minor can find.8 This chapter’s text vibrates through different genres, opens up its field. The poem is followed by a lyrical essay/ prose poem about ‘disabled lilacs’ that emerged out of an email dialogue about the poem with Neil Marcus.9 The lyrical essay ends with a discussion of the collaborative ‘disabled lilacs’ videopoem (2008), now unanchored from any one author, and dispersed in a communal creation. disabled lilacs disabled worlds tumble in the lilac machine disabled dreams try out love for size disabled machines wheel in the night disabled love delights in mountain terrain disabled lilacs smell of the ice worlds disabled mountains hold us open to the sky disabled nights shudder with aching gears disabled skies make the world disappear I float on my pillow navigate the veins sing to you dance a disabled world

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disabled worlds tumble in the lilac machine The smell of it all: lilac, this is ‘the first smell of love’ in the old flower alphabets in which women communicated complex emotional messages through nose-gays, flower sprays, garlands and quiet tokens of exchange. A culture needs words, language. The flower alphabet speaks to me of alternative codings, communication beyond the verbal, in the color/smell/ sound synesthesia of ‘lilac,’ tumbling in the machine, the mechanical interlocking spheres of worlds of which disabled worlds are just some. What are the codes of disabled flowers? disabled dreams try out love for size Trying out: love, for disabled people, love, for people of size, trying it on, stepping into the shoes that might not fit: the father’s shoe, the mother’s shoe might be not shaped quite right for our feet, our sticks, our wheels. But I try it out, size it up, and find my improvisational ways around the nooks and crannies. disabled machines wheel in the night the locomotion of disability: the smooth whirr of electric wheelchairs, the elegant transmission of energies from hand to wheel in a manual chair. dance in the night at some strange Walpurgisnight, machines of flesh and metal and silicon flying together on broomsticks, keeping the old wheel of time, of season’s change, in motion. Machines/disabled: language as a meaning-making machine engaged in the production of self. Sanded into grinding gears by the light of sound. disabled love delights in mountain terrain The mountaintops and crevasses of bipolar hearts, in jumps of delight even though the mountain’s moon side is near. This ‘love,’ quotation’ed by the insistent repetition of ‘disabled,’ can explore, chart the mountain terrain as we climb over each other, infiltrate, pervade, infuse energies into our lives. The rhizome is altogether different, a MAP AND NOT A TRACING. Make a map, not a tracing. The orchid does not reproduce the tracing of the wasp; it forms a map with the wasp, in a rhizome (A Thousand Plateaus: 12). To find our way to each other, we use a map: bodies, contiguous, in contact, a new translation. These bodies aren’t tracings of the familiar, bulbous extensions of what is known: my crip body offers the delights of finding anchor points for crampons, travel boots, canes.

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disabled lilacs smell of the ice worlds and that’s the shudder of it all: disabled–alone. Is this disabled world sharable? Do I smell the ice of abandonment and insularity in the richness I call for in the disabled lilacs? The pain remains, but my mouth widens into a smile as i speak the lines and let sounds dance. disabled mountains hold us open to the sky open, flayed, muscles and joints denuded, double-jointed, holding myself like a mirror to the sky: let me see myself in the sky, in the largeness of it, anything to get away from the narrow, tiny life. Words cut into romantic cliché. The sky rains words. But what is the price of the cut that assembles me on the mountain top? What do I flay open when I call myself ‘I’ and mark the distance between ‘I’ and ‘not I,’ between my singular body and ‘disability’? In the sequence of forms unfolding from ‘disabled lilacs,’ the (currently) last entry is a videopoem, publicly available on YouTube (2008).10 This is what is there: The poem opens with a lilac blank screen, the title Disabled Lilacs and An Olimpias Disability Culture Production. Slowly, small black words move in from the right margin, just below the midline of the screen, and they only become apparent one by one ‘disabled worlds tumble…’ At the same time, the soundtrack starts up. At first, a listener hears quite indistinctly the voice of Richard Burton reading from Dylan Thomas’s Under Milk Wood (1954). Although the individual words are not easily discernable, the timbre of the voice is quite unmistakable as Burton. Then, another voice speaks over this well-recognized masterpiece of verbal performance: Neil Marcus’s voice, and he speaks the first words: ‘Lilacs falling. It’s love, love.’ Then Neil’s voice becomes all texture, and the actual words are hard to make out to people not familiar with his speech difference. But there’s swing in the voice, clarity of attack and modulation, even if the words are not clear.11 So at this point, three different verbal performances are taking place: Burton’s reading, the poem slowly inching across the screen, and Neil’s riff on the words of the poem (tumble, lilacs, alone, whenever we love). After a minute, the lilac background fades, and a black and white photograph comes into view, a shot of two people in two power wheelchairs, against a backdrop of plants and stones. The word machine runs over this assemblage as the poem keeps tracking across the screen, and now the black words are only visible when they glide over white areas of the photo. As the photograph appears, the voice of Lakshmi Fjord speaks an intense

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and detailed audio-description of the photo. ‘In a garden. Light dapples. Shapes … The thumb curves presses against her shin.’ As the poem progresses, the audio describes photos and the lilac background with Neil’s riffs on the poem alternate two more times. At one point, over an image of two figures lying on top of one another, Fjord speaks, ‘his hand, thumb arched, sharp angle, index bent, a hieroglyph,’ while the poem runs ‘make a world disappear.’ A new language, new signification in touching hands and earth, emerges in the interplay of the verbal, written and visual cues. As the screen fades again to lilac, Neil speaks: ‘Lilacs to shelter you. Dance a Dis/ a/ bled World.’ And on the ‘disabled world,’ the verbal riff and the words on the screen are finally in synch for a second, coming together. After these words, Neil hums, lightly, with good humor, and the videopoem ends. The videopoem is a rhizomatic assemblage. It relies on non-mirrored reproduction, different codes intersecting with each other. As a digital form, it is not touchable even in the way of a poem on a page, but yet, it foregrounds eye and mouth movement in both producers and recipients

Figure 9 ‘disabled lilacs’ still (Photographer: Lisa Steichmann)

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(it is fun to watch seeing people’s eyes move as they scan the photos and follow the migrating text). It is also a production whose authors are not readily apparent, non-hierarchical: Lakshmi Fjord, the audio describer, is a poet as much as the writer of the scrolling text, the performer Neil Marcus has a voice that speaks of a wealth of emotion without conventional clarity. The videographer Sadie Wilcox creates a mashup of time and space; the photographer Lisa Steichmann creates lush surfaces over which to travel. Together these people form a machine of difference, one that does not rely on reproductions of the same, either as copies or in clear metaphors, but on nomadic tactile relations where things like words and sounds and images and movement double and shift, create tense lines across surfaces. A rhizomatic model of disability shifts momentarily into view: one in which different interpretations and articulations do not vie for space to open into a single interpretation. Instead, they shift tectonically together and against one another. Where is the poem’s anchor? Where is disability’s location? The content of the poem’s words, the physical forms marked by living in spastic or painful embodiment, the photos of these forms as patterns of light and shadow: all these elements do not allow for an easy allocation of lack to the unclear voice. The reader’s eyes, the listener’s decisions on meaning, cut into the rhizome, gather meanings out of a field. But it is all unclear, and the frazzled ends of these undecidable meanings speak to the continuity of possible proliferating interpretations – here are hieroglyphs, as the audio-track describes an arrangement of fingers, a signal that reaches out. * * * ‘disabled lilacs:’ Neil finds lilacs enjoyable to say. And so he performs his improvisation of this poem, and we, collaboratively, gather together to make marks, meaning, hieroglyphs, sonars, chartings, lean into Richard Burton’s sound, into the history of Milk Wood and the words of poetry, to produce our own sounds and sagas. Disability is a word cut in the landscape of bodies. It marks the markings of language: a tattoo that makes a legible map when we lie together. To write within its purview highlights the language function of words: their differential play, their ability to structure YOU/NOT YOU. Experimental poetry is not only stuff that is unintelligible on the page. It is also poems that become unintelligible as they are performed, as their familiar words enter a machine that sticks and shudders with aching gears.

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Disability poetry as a minor literature draws community. It draws community to cut it, and it draws community to live in the cut. Disability vibrates love, food, country, and lilacs into absurd positions, into rhizomatic relation, into a minor aesthetics, and the world’s terrain shimmers into ambiguity. The ending of this chapter is quite tectonic, tactile, sonorous, harmonic, touching things to one another rather than creating an arboreal structure of connection, root and branch and twig. Some is given up in this way of writing, some clarities are lost, but other clarities might be gained. With Van der Klei and her quote at the opening of this chapter, I want to encourage leuzen: shifting textualities across borders. In the rhizomatic model of disability, I keep on the move and rest while leaning. I offer these energies to you.

5 Burning Butoh: Self/Community

(Disability culture) is not simply the shared experience of oppression. … The elements of our culture include, certainly, our longstanding social oppression, but also our emerging art and humor, our piecing together of our history, our evolving language and symbols, our remarkably unified worldview, beliefs and values, and our strategies for surviving and thriving. I use the word ‘remarkable’ because I find that the most compelling evidence of a disability culture is the vitality and universality of these elements despite generations of crushing poverty, social isolation, lack of education, silencing, imposed immobility, and relentless instruction in hating ourselves and each other. (Gill, 1995) I echo Carol Gill’s experience of disability culture, and of the breathtaking and breath-giving force that animates it. For me, writing this study with a rhetorical voice from within this culture, disability culture is the difference between being alone, isolated, and individuated with a physical, cognitive, emotional, or sensory difference that in our society invites discrimination and reinforces that isolation – the difference between all that and being in community. Naming oneself part of a larger group, a social movement or a subject position in modernity can help to focus energy,1 and to understand that solidarity can be found – precariously, in improvisation, always on the verge of collapse. Disability cultural practices have fed a number of publications in recent years,2 but only a few of these investigations name ‘disability culture’ as opposed to individually focused explorations. Fewer still explore the tensions between these different ways of conceiving of art practice in a minority culture environment. Johnson Cheu opens his discussion 109

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of Neil Marcus’s Storm Reading and Jaehn Clare’s Belle’s on Wheels with a quote from a performance by Cheryl Marie Wade and Amy Mulder, to set a tone away from cure-based or inclusion-based politics to a culturally focused perspective: ‘No longer the polite tin-cuppers, waiting for your generous inclusion, we are more and more, proud freedom fighters, taking to the stages, raising our speech-impaired voices in celebration of who we are’ (2005: 135). In this quote, and in many essays exploring disability culture, the addressant of cultural labor is a non-disabled ‘mainstream.’ More recently, intracultural perspectives have begun to emerge. Artists’ communities are more connected, audiences have grown, there is more material available (at the same time as much material slips out of consciousness, and archives and scholars are attempting to chart the timeline of disability culture history). The stage is set for delineations of multiple cultural identities in contact with one another. This chapter offers three experimental responses to and from The Burning Project, a 2008–10 Olimpias workshop/performance series with shows in California, Michigan, Washington State, and Oregon; workshops in Australia; and a lively international on-line component. In the undertow of this chapter, disability and culture as initially opposing concepts begin to spiral into each other in the practice of a particular intercultural movement experiment. The elements of this chapter work dramaturgically, not (only) analytically, and the tectonics of bodyminds in movement shift the writing forward. I begin with Butoh, a Japanese/ transnational movement form, where the ‘cripple’ is the non-cultural body whose stark becoming holds the seeds of protest. I then inch towards a reclaiming of agency and cultural specificity by ‘cripples,’ toward a joint desire for cultural expression, toward a different kind of cultural agency.

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5.1 RHIZOME: CHOREOGRAPHY OF A MOVING WRITING SELF When I write about the physical act of dancing, unique assemblies of thought often occur. These thoughts often re-inform my choreography and performance. My body as performer is more inclusive in the aftermath of writing a dance. (Hay, 2000: 28) The collective assemblage is always like the murmur from which I take my proper name, the constellation of voices, concordant or not, from which I draw my voice. … To write is perhaps to bring this assemblage of the unconscious to the light of day, to select the whispering voices, to gather the tribes and secret idioms from which I extract something I call myself (moi). I is an order word. (Deleuze and Guattari, 1986: 84, emphasis in the original) That one is dancing. Meaning that thing, meaning being the one doing that thing is something the one doing that thing is doing. Meaning doing dancing is the thing this one is doing. This one is doing dancing. This one is the one meaning to be doing that thing meaning to be doing dancing. (Stein, ‘Orta or One Dancing’ (1912), 2008: 114) Let’s write in dance. In this meditation, I share the touch of my trembling muscles willed into a writing turn: choreography, choreo, khoreia, chorus. I am witnessing the rhizome of my body dancing, the multiplicity of an ‘I’ dispersed in sensation and movement; Deleuze and Guattari’s whispering voices assembling,’ the hidden histories: graphy, graphia, writing. I think of a stylus, quill, pen, of the single point that assembles the multiple sensations and experiences of a dance, knitting together the spatial and temporal impulses that move through me, distilling a narrative. This chapter has different voices, different modes of attention, and it witnesses my embodied thought-processes while dancing in energetic touch with others, with texts, with bodies. The chapter presents different modalities of dancing thinking, thinking in multiplicity, thinking through others’ thought while moving, but the edges and delineations are not as clean as a paper form might imply. I hope to show choreography in action by working with and through my dance reading at the time of my dancing and my dramaturgical process. * * *

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My side rests on the black floor of the stage. Above me, my arm grows upwards. A different energy turns me, ever so slowly, forward. Both movements are very specific. I am in my arm: I am in my back and stomach muscles, calibrating pressure. It’s hard to keep so slow, so still. I have rehearsed this, prepared for this. My focus is in my arm, in my core muscles, in two (and more) places. And yet, I feel honed down, narrow and wide at the same time. I know now, writing this down, that I am not with the audience, with my form on the ground, with the light changing on me. I am not controlling my arm and my core from one central place: there is no connection between these two movements of my flesh. But there is me, thinking this: strangely aside, and yet fully present, as my dual focus continues. I am dancing as part of Burning (Berkeley, California, and other sites, 2008–10). Burning cites Butoh not so much as a specific technique allegiance or cultural embedment, but in relation to a mode of thinking about bodies and intensities. Burning is a show about membranes and penetration, about interdependence: cell membranes, cancer growth, neurological difference, environmental toxins, permeability, and being

Figure 10 Burning rehearsal, dancers Christina Braun, Neil Marcus, and Petra Kuppers (Photographer: Kelly Rafferty)

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permeated by/open to physical and cultural influence. It’s a show created by people who, in the main, identify as disabled, and who now wish to explore the depth and heft of the meanings of disability and medical imagery. Let’s grow these images we cannot escape, water them with our blood, let the garden of meanings blossom in our flesh, words, images. We move intensely, sometimes imperceptibly, and let words and practices sift through us. Butoh is one of the training modalities we employ, and, together, we familiarize ourselves with the heritage of this movement form, and its links to representations of disability in contemporary performance. Butoh is often written about in reference to the devastation of Hiroshima, and to the adoption of techniques of German expressionist dance – this is the main narrative that emerges in many US reviews of the form. Some Butoh practitioners in the United States and Canada, such as Kokoro Dance, specifically reference the destruction caused by the US nuclear bomb, for example, holding the World War II dead in a dancer’s arms like a contemporary pieta. Kokoro present their performance as a call for corporeal compassion, an intervention into transnational affects. Others, such as the NYC-based couple Eiko and Koma, acknowledge but do not specifically stress this origin narrative, and offer a performance experience of energy and attention. Each Butoh performer has to find a way to come to terms and be captivated by the multiple origin narratives and technique inspirations Butoh offers. In the introduction to an important collection of translated Butoh writings, the editors reference the writings of one of Butoh’s founders, Hijikata Tatsumi, as ‘self-mystifying,’ which is itself a comment on the evasive, open nature of a writing that refuses the sense and grammar of words and movement (Hijikata and Nanako, 2000: 12). This sense of evasion is heightened by the discussions of translation in relation to Butoh writings. Many of the interesting verbal images are unstable in themselves, and scholars of Japanese performance query the appropriateness of translational practices, that is, the disparate fit between certain English and Japanese formulations. This hyper-verbal yet elusive poetic framing, combined with the destabilizing of complex translation, offers nourishing soil to the discursively inclined dancer. There is much to stem against in Butoh writing: formative writings on gender and Butoh edge close to disgust with flesh (often female flesh), and abjection of the body. I have not personally experienced this abjection in my work as part of US Butoh communities in the 1990s and 2000s (most recently, with the Bare Bones Butoh group in

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San Francisco, and with the Butoh San Francisco Festival).3 To me, the poetics of becoming, combined with the intellectual excitement of a poetic sense/word universe, provide the draw of the hybrid Butoh work I encounter when working side by side with people who infuse Butoh with their Native American roots, with contact improvisation, or with break-dancing.4 My Butoh experience lies in the zone between reading about and making physical the modulations of energy, the dis/connect between corporeal instruction and literary seduction.5 How can an audience and a performer create a force field, a palpable energy beyond narrative but which emerges from poetic imagery? Ashikawa, one of the female founders of Butoh, says that ‘dance has its roots in our flesh … deeply intertwined with intuitions and the free play of our emotions, transfiguring the body’ (Fraleigh, 1999: 142). These flesh roots provide the background to my performance explorations. I think about all this, subtle sensations, flesh roots, corporeal intensity, for a split second, before I will myself back into the full presence of my movement. These thoughts ghost into the background, and I trace the tingling of the nerves. Butoh: habitation, allowing something else, an outside, to move me. To me, this movement is about invitation. I invite my arm to not be connected to my breath, my slow, turning movement. I invite my core to not be connected to the weight of the arm: when the matter of the arm begins to interfere with the balance of my slow rotation. The arm is ‘other’: an external pressure that needs adjusting to, not a connection of the same, recognized flesh. In the stillness of slow movement, in the tensing of minute muscles, I am present. This contradiction between dispersal and presence, exertion and observation, is what I invite in this dance. In one of Koma’s workshops, he repeats again and again: ‘the body wants to move.’ Eiko and Koma speak of ‘delicious movement’ born out of spaciousness and attention. (workshop communication) Plant movement. Rhizome: connected disconnect, a tendency towards the non-hierarchical that always already fails, that always already approaches its limit. External stimuli shape the movement, as the ‘Gardener,’ Neil Marcus, one of the other dancers on stage with me, transfers his energy to my arm through his eyes, his focus, his breath, his small movements. The hairs on my arm feel a wind of breath running over them, and pull the skin, the muscle and the blood towards

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the origin. My fingertips feel the weight of a gaze on them. A touch of a foreign finger on these fingers. On each finger. On the tiny hairs on the fingers. On the rills of my fingertips: on impossibly small sectors for which I have no name. A slight articulation of the shoulder, which shudders upwards towards the hand. Beneath, the torso turns. This is a dance that invites a walk in the impossible. I invite the emptiness of an ‘I,’ and use tension and vibration to open up to the possibility of no control in that highly careful control of the fibrous pull of my muscle tissue. The plant, the human, the I: the tension between the arboreal, centrally organized system and the rhizomatic, dispersed one, become the shape I follow in my skin, my blood, my muscle. I am in an openness to stimuli that attempts to keep representation at bay: I do not ‘dance’ a plant. I do not visualize a particular flower or tree; I try to focus on the abstract function of ‘plant’ instead. I attempt to not be enfolded in the specific, to not be ‘I’ to a ‘Not-I,’ but to be in both and all places, all the many places between ‘I’ and ‘Not-I.’ My method is in the paradox of dispersed movement. Dance knows what my everyday speech does not know. But my writing, like Deleuze and Guattari’s writing, can begin to know it again. Something is out of my grasp, and this chapter reassembles something. While ‘Ankoku Butoh’ can be said to have possessed a very precise method and philosophy (perhaps it could be called ‘inherited butoh’), I regard present day butoh as a ‘tendency’ that depends not only on Hijikata’s philosophical legacy but also on the development of new and diverse modes of expression. The ‘tendency’ that I speak of involves extricating the pure life which is dormant in our bodies. (Iwana, 2002) These thoughts and others about Butoh’s invitation to ‘pure life’ (to being taken over by an essence beyond subjectivity) have fascinated me since I first heard about it. I do not believe in the possibility of touching a pure life. We live in the narratives, images, and practices of the disciplined docile body minds we are in time and space. And yet, when I move with great precision, with full attention, fully present to the movement and its demands, I can feel the limit in myself. The limit is in the invitation, my dance teaches me, it is in a momentary tuning that heightens my attention to the moment where I forget the ‘my’ and the ‘I’ … and this forgotten ‘I’ immediately pays such close attention to the images, practices, and histories that pass across that moment. The invitation is the opening that forgets the passing of time, the performance,

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the audience. I forget the connection I feel with my fellow performers as humans, an ‘I’ amongst other ‘I’s. For short moments at a time, I only feel them, these other ones, as influences on my (or a) moving body. I experience these moments as freeing islands, refreshing zones of unselfconscious embodied presence. And, at the same time, I experience the inflow of images, practices, histories, stories, as the life of theory. I dance the assemblage of the Deleuzoguattarian ‘moi’ in space and time. Dancing and writing intertwine. Voice change Hijikata’s language rejects interpretation as his butoh assumes the appearance of a swindle, in which the subject and object are undergoing metamorphosis so rapidly, it swindles even his dancers’ bodies. (Mikami, 2006) Swindle my body. My body swindle. My crippled body swindles its way out of its images. Crippling interpretation of cripples. The Gardener, Neil Marcus, has a spastic movement vocabulary and a significant speech difference. I am large and round, a heavy body on stage, with multiple loci of inflammation at work in my tissues at any one moment. In different ways, our bodies are read as abnormal on conventional dance stages. Butoh attracted both of us for this delicious movement, this play between the depth and surface, the place of metamorphosis and transformation. Butoh allows me to unfold something from minute sites, allows me to layer images, words, myths, flesh, and blood. When performing, my presence smears across the bodily and into what my act enacts. There is enough time between one breath and the next to feel the firing of words in my brain: cripple, blood, swindle, translation, ghosts.6 Words dance. And as I repeat my action, and the scene, rehearse for it, I can mine these word/sounds and shape them into coherent thoughts that in turn problematize my ease in turning. Extreme slowness and rapid metamorphosis grind through me together, gears engaging with each other. Cripple. Bare life. These are the two word fires that keep halting my turn, and even now, as I am writing much of this after the rehearsals and performances have occurred, I stop – only to make a conscious choice to go on, drawn by a nervous net of connections. A quote about the cripple is the origin of my fire, the reason I started to explore choreo/graphy, dance and writing, at the site of Butoh. Only when, despite having a normal, healthy body, you come to wish that you were disabled or had been born disabled, do you take

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your first step in butoh. A person who dances butoh has just such a fervent desire, much like a child’s longing to be crippled. When I see children throw sticks and stones at a lame dog trying to slink from sight, then corner it against a wall, and mindlessly beat it, I feel jealous of the dog. Why? Because it is the dog which derives the most benefit here. It is the dog that tempts the children and, without considering its own situation, exposes itself completely. (Hijikata, 2000: 56) There are many connections to be drawn (and all of this fires through me with each minute, ongoing turning motion in the dance); the cripple of Butoh rehearses abjection, a loss of control as essence (turn) that I wish to reclaim as a disability culture artist who chafes against negative stereotypes. And yet (turn), there is a fascination in me with the strong presence of ‘cripple’ in (English translations of) foundational Butoh writings.7 The essentialized cripple or the poor injured dog accedes to full immanence, to a presence in time and space untainted by the reflective coding of meaning-making. I am, turning, grasping towards full presence, to just be turning, without these words running through me, and, at the same time, I protest the use that is made of the dog, and of the cripple, and the nature of this dragging conflict fuels my desire to make a dance of the Butoh cripple. ‘Pain’ and ‘cripple’ – these words often emerge as sites for experiences that push people to the limit. Pain emerges in my dance. Neil Marcus pays for each of our rehearsals with lots of pain, and he needs long periods in bed in order to prepare and recover. I pop painkillers before and after our work. Neither of us two, and few of our co-performers in the various incarnations of Burning, can perform a few nights in a row. But these things are part of our culture, disability culture, our daily lives, and there is nothing particularly dangerous or edgy in that – for us. The tendency to metaphorize, to make disabled people or people in pain represent purity, pre-rational life, and exceptional moments removed from a social sphere, is deeply troubling to those of us who live these lives as ordinary experiences, manageable and familiar (if not welcomed). In my dancing turn, I find my attention wandering to the writings on bare life. I feel curiosity mixed with anger, and I also feel a connection, as do so many other disabled dancers who are fascinated by Butoh, often precisely because of this exciting intertwining of the images of disability with dance.8

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I let my dancing mind consciously wander, in some of the longer rehearsals, and all kinds of terms come into my mind, things German (my mother tongue), Italian, Greek, English. They all twine around me, like fascia, into wider connections beyond my muscles, toward the muscularity of expression, as I think through the image of the dog and the cripple in Butoh. In The Coming Community, and based on Walter Benjamin’s critique of violence, Georgio Agamben discusses the relationship between zoe and bios – bare or minimal life (‘la vida nuda’ in Agamben, ‘blosses Leben’ in Benjamin, ‘bare life’ in Agamben translations), and qualified life, life as part of a group. He does this as a way of pointing to the agency of the state and the opportunities of undoing order. Does that poor dog undo an order by exposing itself and its torturers? In the state of exception, the rule becomes visible, and demarcates the boundary of control (while at the same time reasserting that control). Bare life is the life of the homer sacer, the Roman figure of a condemned man from whom the state has repealed its protection, who is exiled from the law, and who can be killed without juridical consequences. By creating a line between ‘inside’ the system of law and order, and ‘outside,’ a political system manifests itself. Bonnie Sue Stein writes about Butoh ‘audiencing’ that people are drawn in by raw emotions. She has seen ‘spectators staring with wide eyes, and … sleeping … in an escape from the spectacle rather than boredom. In Japan, especially at Noh drama, a “hypnogogic dozing” is an acceptable way of taking in the performance’ (Stein, 2001: 377). This hypnogogic dozing also happens to me in the form of small ‘ins’ and ‘outs’ of the intensity of my twitching nerves and straining muscles. Lying there, I continue to turn, and just as I am all in the small muscle energies of both holding and moving at the same time, areas of my body screaming, and I am all in the attention to my fellow dancers’ energy transferring itself to me, I still also have flashes of Agamben flow over me, writing fragments. Agamben becomes my dream in this elongation of time, in these seconds and minutes of the turn. Free-writing after rehearsals and performances, this text accretes from my memories. I am composing myself, my text, in my performance: my own hypnogogic performance mode, my self-audiencing, my witnessing. I write, remembering. Agamben’s notion of bare life provides an opportunity to speak outside the structure in a state of exception; it is close to essentialized ways of thinking the supposed authenticity of the body in pain or at the edge of death, but it is not the same. Bare life is not ‘original,’ or preceding the state, but is artificial, emergent in the constitution of the system

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that demarcates a space within which its functions do not apply – the state of exception. This state of exception can, for instance, erase distinctions between public and private (in a Panopticon prison complex) and allow the state full control over entities (no longer people) in a concentration camp. Importantly, Agamben argues, the state of exception is no longer dependent on a ritualistic and singular expulsion, but moves closer and closer to the state of law, tarnishing it, infiltrating it, infecting it, until, in the contemporary world, the boundaries have become labile, and the system is exposed as violent (still experiencing the stricture of my choreography here: the immensely slow turn, which means control of my core muscles, which begin to ache, sometimes cramp, during rehearsals). To follow Agamben: the hunger strikes at the Guantanamo Bay prison camp are the only possible expressions that can emanate out of people put into states of exception, whose personhood has been stripped down to ‘bare life.’ Communication can only occur through incursion into this flesh, bone, and blood, that is, no longer through speech acts. To signal with the life of the body is the only action open to people in states of exception, and in acting within the state of exception they defy the universality of the hold of the system, show its limits, but also reassert the system’s power (to delimit). In this formulation, the Foucauldian impasse of how to offer resistance to the system finds a painful answer: when the system, the state, is the site of violence in the public eye (as in the worldwide response to Guantanamo), it loses its legitimacy. I shift, turn imperceptibly to the audience’s eye, but I feel the muscles pull – pull hard – sideways in a slight shift. Does Butoh expose the strictures of social regulation? Or does it aestheticize an impulse away from the political? In Butoh, bare life, creaturely life, stands in an interesting relation to these issues of politics, state power, and resistance. Can a state of exception be enacted, ritualistically drawn upon, evoked, embodied? Can the rules of bodily behavior, the enculturation of the human body, become experiential in their willed absence, their suspension in the durational, painful, and sublime bodies of Butoh (suspension, holding on, muscular tension)? European expressionist dance traditions, one of the roots from which Butoh draws, have often emphasized the ugly, the deformed, and the political agency of dance. To me, the alliance of this political impetus with the figure of the cripple shifts my moving body mind, and makes me query the limits of essentialism and metaphor, body words, sound gestures. In Butoh a state of exception becomes the threshold for a new expressive force, and it is at this threshold that the cripple and

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the beaten dog hold a tenuous, agent-less position. What drives my movement? I shift, barely perceivable to myself. Turn. These thoughts on the politically problematic aspects of turning away from representation and towards (an imaginary) biology, a life measured in muscle and nerve, are not all that is with me in my position on the floor. Instead, in the many private and group rehearsals for this moment, I remember myself in the histories of my embodiment, and sediments of experience float to my attention when it vibrates away from the experience of tension. My experiences of muscle fibers twitching with the exertion of the slow turn, this delicious fully present attention to the mechanics of life, this narrowing of focus, all map easily on my movement habits when in the grip of pain. I remember myself: I put one foot in front of the other, with great deliberation, with a meditative focus charting each energy arrow that pierces and chafes. I remember myself: I lie in bed and focus on my breath, on the moment, on this expansion of chest happening now. (I rehearse for my pain self in my dance self in my writing self. Delicious pain.) Meditation and the comfort of rhythm helps to break my attention’s focus on my painful joints, on the non-located generality of inflammation, on my imaginative voyage through the pathways and tissues of my body. The dance is the dance. But what else? Is this dance to me an engagement with pain, devoid of pain, but with a similarly dispersed energetic attention? Is it an exploration of pain’s sharpening, a rehearsal of control-less control, of being with pain? ‘Vines/threads of perception,’ Neil Marcus, the Gardener, writes about his experience of our dance in the weekly writing exercises we share. I am bound and unbound in my dance. Muscle fibers, the fibers of my reading self, they all bind me. I am bound into selfhood through the excitement of theory, understanding my interdependence viscerally as I respond, minutely, to the gardening hand that hovers over me, Neil’s hand. Even now, reflecting on my dance, I want to engage in this dance again, an addict to the newness of the tangle of vines that emerges in the energy fields of different presences within and without my moving body. I feel as if I clear the field towards a new grounding. And yet, in the way I understand Butoh as a choreographic practice, the presence of ‘cripple’ never leaves my perception fully. In immanence, I reclaim the presence of pain as presence: mix it with the always-present representational history of pain. The membranes between concepts shift as I dance, reflect, stem against narratives and metaphors, and yet invite narratives of political intervention, metaphors of growth. To disarticulate these contrasting movements is

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impossible, but my dancing bodymind can hold on to all of them, in the complexity of movement as an embodied, reflexive, communal, and individual act. This is the horizon of this dance of body and words: an acknowledgment of complexity that nourishes itself from multiple knowledges and perspectives. My dance, touching bodies to words, becomes my choreographed politics.

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RHIZOME: COLLABORATION A seashore inside her she is drifting in the shallows of a short nap’s trip inland and when you put your arm leg hand near enough to mine all my cheek cells will come wading, swinging lanterns and singing, out to meet you Amber DiPietra (part of the 2009 Burning workshop series)

Burning Wiki By Leora Amir I’m here because I’ve been invited because I want to mess with the audience, move with them, bring ideas and be brought to them I am here because I am trying to understand how disability, culture, impairment, connection (to self, body, thoughts, sensation, audience, person) fit together, or clash, engage one another, rub up, bristle… I am here because I like what people and bodies and honest expression (writing, performing, ‘practicing,’ being, moving with, connecting, reflecting) can teach me. I’m here because people in the disability and disability arts community have something to teach me challenge me comfort me. I am struggling with my closeted-ness about impairment, at the same time my impairments are making themselves visible, undeniable…the complex webbing of upsetness at changing body, mine…or at frustration at my healthcare woes or communication breakdown…

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but also at the interesting changing sensations or at my dealings with the ‘able-bodied’ frames of mind that look at all impairment as SAD (see ‘sad face’), that see all disability not with the eyes of complexity and possibility, but with a limited simplicity that sucks the vibrant life out of changes (bodily, mind, senses, thought). I am here because I am interested in different ways, outside of typical ways, how disabilities, differences can be explored. I enjoy the voices that emerge from this community. I like for no one to know exactly what will happen. I am typing with my left hand slowly, my non-dominant because my right hand is numb, my right foot, right face…not dead but tingly and farther away than usual to me. A cane is in my repertoire now…originally I (and a friend) had conceptual ideas for a cane – a flat cane, a graffiti cane, ‘cane and able,’‘Cain and disabled’…In the end when I needed one, I took the first sturdy one available, from my mom (no, she didn’t need it any longer). I want to use this as research, to look at how people look at me as I hobble, but I can’t even look up from my hobble, my concentration fully needed. I see some grimacing faces…and some faces that I swear nearly say, ‘I’m glad I’m not her.’ I start saying ‘hello’ and smiling to off-set it.

The Olimpias is a collaborative, research-focused environment open to all, but particularly to people like myself: people living with pain and fatigue issues. Amongst my core collaborators are people diagnosed with conditions like cerebral palsy or dystonia, multiple sclerosis, or spinal cord injuries. Some of us identify as mental health system survivors or as neuroatypical. We use a different path from our colleagues in professional physically integrated dance and theatre (like the US’s Axis or the UK’s CandoCo),9 where ability and technique skills are developed, and traditional performance paradigms of stamina and punctuality need to shape the work. Olimpias artists have deep insight and creative ability, but they might not be able to attend rehearsals regularly and extensively, and they cannot guarantee their presence at any one performance. We make this difference into a virtue, querying the format of art and performance paradigms. We approach rehearsals as selfcontained workshops rather than parts of a natural progression towards a rehearsed performance. This allows for a much freer engagement, and a wider draw of people, forming communities rather than ensembles.

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This section is an embodiment of our working practice. People separated by time and space engage with one another. In this section, we are using segments of our performance-script and material from our dramaturgical Wiki, an online environment in which all participants can post and open up new areas of discussion. At the heart of this swirling creative energy, the Butoh cripple-desire resurfaces.

Burning Wiki By Petra Kuppers Burning emerged for me from an older project, a three-week guest residency at SymbioticA in Perth, Australia, in 2005. SymbioticA, at the University of Western Australia, is the first research laboratory that enables artists and researchers to engage in wet biology practices in a biological science department. It is a place of transgenic art, tissue manipulation, and other sci-art practices. I visited there in order to work on Purgatory Possible Projects, an interview-based sound-installation piece that investigated the outer edges of medical and artistic ethics: what kind of projects were beyond the pale, couldn’t or shouldn’t be realized? PPP intersected the voices of artists and scientists with the local sounds of Perth, seagulls and winds, and brought revealed grand dreams in contact with the specific, the local, place, and site. A complicated premise had brought me to Perth and PPP – could I create a piece in which I could engage with bodily fantasies around cancer? This initial project idea was driven by a new medical visualization technique that uses polarized light to track the movement of cancer cells – movement different from that of non-cancerous body cells. The images that emerge from this experimental diagnostic technique are stunningly beautiful. Too beautiful? Beyond the reach of what a community artist who often works with cancer survivors should use as material? What are the limits, and why? What would it mean to work poetically with alternative imaginations around cancer’s bodily invasion, war metaphors, and transformation? What does it mean to explore movement as a tracker for difference, but to not work with ideas of deficit or negativity, struggle or fight?

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How can we host the multiplicities of movements we hold inside, how do we fill the hollows of our bodies, hollows within and without? Burning emerged as the continuation of that project. I keep asking the same questions: how do people find agency in the storylines and images of diseases and biomedicine that surround them? If deviation means death, is there an ethical place for a purgatory, an abeyance, a halting of stories? The performance text of Burning enacts such questions in relation to cancer narratives and their disclosures, and to the stories surrounding diseases or disabilities that are sticky, unclear, ill identified/require self-identification as ill, such as environmental toxicity, chronic fatigue syndrome, or autism. Another dimension of Burning emerges from New (and Old) Age body work and cultural contact narratives. In the workshops, I make use of Whakapapa ritual greetings I learned on Ma¯ori marae, of body awareness modes modeled on humoral theory, body-mind-centering, and of Butoh training methods. With these spatial and temporal dislocations, the workshops echo the widespread use of non-biomedical modalities in the shaping of bodily fantasies. What does it mean for me to use ritualized formats, to ask people to take words into their mouth and bodies, to partake in energetic exchange? Can there be dialogues and engagements that are non-verbal, or else verbally poetic? What is the relationship between acting, witnessing, and performativity? How can I mark my use of ritual, dream-journeys, and energy body work techniques as acts of conscious cultural hybridity, aware of the violence of historical and contemporary appropriations, without falling into either irony or sentimentality?

Burning Wiki – Outcomes Thread by Kelly Rafferty A few weeks ago, Petra, Neil, and I performed at Bare Bones Butoh in San Francisco. The ten-minute piece consisted of Petra and me, each wrapped in a shimmery, peachy pink piece of fabric, slowly rolling over on the floor as Neil, wrapped in a similar piece of fabric, used his hands, gaze, and breath to encourage our arms and legs to grow towards the sun like little fledgling plants. When Neil

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took his energy, hands, gaze, and/or breath away from our limbs, they wilted. When he brought them back, the limbs began to grow again. The piece required a certain degree of precision (moving that slowly can be physically difficult) and focus. The goal was to respond to even the slightest shift in Neil’s energy. For the first three minutes of the piece, an audio recording played. On the recording, I read one of the monologues from the Burning script. On Saturday night we performed at Moment’s Notice in Berkeley. We were joined by Christina, Leora, and Eric. We also invited the audience to sit around us in a circle on the stage. I began the piece by performing the monologue live and putting myself in conversation with our circle of spectators. Christina and Petra were our shimmery pink garden landscape, Neil was our gardener, and Leora and Eric sat in the audience circle and moved in response to the energy between Christina and Neil and Petra and Neil. What is it that we’re trying to get out of these performances? What are our desired outcomes? I’ve been turning these questions over in my mind for the last few days as I think about our first Burning performances. On the one hand, these seem like very simplistic questions and on the other hand maybe they’re useful in their simplicity. The questions emerge from an experience I had recently. I was asked to explain my dissertation research to a group of stem-cell scientists and make a case for why I would make a significant contribution to the study of regenerative medicine. I told them about the issues I was exploring – about the politics and aesthetics of biomedicine, about what it means to try to ‘cure’ someone or something – and they kept pushing me to articulate exactly what my ‘outcomes’ would be at the end of a year of research. My questions, my artistic and theoretical explorations were illegible and unimportant without an accompanying list of desired outcomes. Maybe these performances are little experiments with energy and maybe the spectators are willing research subjects? As we perform this piece in different venues for different audiences, as we charge up our proximity to the audience, as we collaborate with more people or fewer people, we observe the changes in energy. Like a little science experiment, we change the variables every time and use our feeling instruments (our bodies) to measure the changes. Of course it’s an imprecise methodology, but I don’t know that its imprecision makes it useless.

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If we ask the audience to sit around us in a circle, do they have a more direct impact on an experience, a better access to the energy transfer at the heart of the performance? Is the spectator’s energy and focus more directed and intense when we’re performing in a dark black-box theater and we can use beautiful stage lighting as a kind of character in the performance? If we have more of a clear narrative, does that make it easier for a spectator to hook in and give us their energy? What is the relationship between narrative/character/ arc and energy in this piece? Of course it’s entirely possible that our desired outcomes for these two initial live performances have nothing to do with learning more about how energy and focus can be shaped. Maybe we’re trying to experiment with the relationship between the physical landscape of the play and the language of the play (which is why we have these body landscapes of flowers paired with a short section of the text). Maybe we’re trying to do something else entirely and I can’t quite see it yet. At this point I’m less interested in pinning down a list of desired outcomes than I am in starting a conversation with all of you about what some of our desired outcomes might be for in the future. Just for the sake of accountability, motivation, and playing with scientific conventions…

Burning Wiki: Outcomes Thread By Leora Amir I note that ‘Desire Outcomes’ is a strange phrase for structured improv process-based work. But the question might be also about engagement. It feels like we are just beginning to engage with this work and perhaps are curious how others engage with our engagement, discoveries, exploration. I’m wondering about ways participant audiences can or might want to engage with us. I felt a direct impact having audience near and with us and apart from us at the same time. I wonder if our questions to audiences about engagement might…I don’t know…engage them in a different level. What do people need to know about our work to engage with it?

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Burning Scene The Desert. Minimally different locales. It’s a valley somewhere near the annual Burning Man festival, or a similar event. It’s ok for strangely dressed character to drift in and out of the scene, if desired. A little dry garden patch for Rafia. Water, at one point. Notes The performance script contains audience engagement segments. Ad-libbing at the audience is fine. Think freak show caller. Then think ritual. No one in the play is a victim. They survive, and do so well, with some pleasure, find something they are looking for, and in good company. Synopsis Four seekers live among potentially radioactive rocks not far from the Burning Man festival site, out in the desert. They all search for some kind of resolution: one lives with pollution-induced cancer, one with leprosy, one with severe pain, and they all talk of allergies, environmental poisons, autism, living in a land that effects their bodies. They refuse to think of their differences as negative. They meet an Iraq veteran and other Burning Man visitors. Guided by a mysterious disabled dancer, they go through a ritual. They perceive their bodily changes as transformations, as being in emergence towards something new. Each makes a new commitment to life.

Burning Wiki: Butoh Dis/Ability Thread The Gardener by Neil Marcus An actor performs a role. What is the role Who is the actor? Who am I? What world do I live in?

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i am called the gardener in burning.it feels to me like a mystic role. I invite the audience to enter our creation. To enter the performance. The mirror of life. It is improv by plan. the script is fluid and at times the script is to follow the immediate moment/present. I m playing with a lot of preconceived notions. Breaking them down. Pushing limits. I often think about the role of disability in society. Is THIS what it does? In the performance, exactly what? Are people looking for? Guidance.hope.catharsis? What is the role of performance? Can I be more than an actor? Can I be me? Can I touch (literally) my audience? In real life I often feel like I am acting for the people around me. On stage however I feel im not acting im naturally there, second nature, I do not set myself apart from THE ROLE. Or the audience I watch them as much as they watch me in burning. I react to their reactions. They direct me as much as I direct them.

In our Burning workshops, we develop what Antonin Artaud calls heart athletes, we train ourselves into somatic poets aware of the affective world, not only of images, but of the material effects of sharing space. We become embodied researchers who play with quotes such as ‘the soul can be physiologically reduced to a skein of vibrations’ (Artaud, 1958: 135). We use presence, slowness, pedestrian movements, a poetics of words and bodies, and the deep affective register of touch to share our beauty and our vibrational critique on the edges of language and somatics. Burning focuses on bodily transformation. We are exploring the effects of the story-ing of cancer, MS, the historical legacy of leprosy, …: diagnoses with significant negative public images, surrounded by fear. What happens when we change genre, move from stories to poetic interventions? Our aim is to show life within these metaphor/diagnoses complexes, to show what happens when a cancer survivor speaks about her

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Figure 11 Burning workshop, Adelaide, Australia, with members of No Strings Attached

cells blooming. How do we live with cellular change that is invisible, and yet registers deeply? The journey we are on is attentive to many different perspectives. There is no message, no single narrative, but an exploration and opening of process. Together, we engage in an embodied poetics, a communal poetry-ing: creating new forms of sociability and community, not (only) textual products.

Burning Wiki: Butoh Dis/ability Thread By Neil Marcus I was so very lucky to have found Butoh. I’m not sure if it’s a dance form, a philosophy, an art form, aesthetic or form of politics. It fits well with the reality of being disabled (how great and rare is that). When I see Butoh, it seems to emphasize imperfection rather than perfection. Traditional western ideas of ballet would be the opposite of Butoh.

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My dance moves me in ways that are not ‘ballet’ like. I think my spastic dance has much in common with Butoh. When I have watched butoh performance I feel the following words describe it: Disjointed.Spastic.Malformed.Crippled.Flailing.Unearthly. Possessed.Strange. Uncoordinated. There can be a lot of facial grimacing. I say wow. This includes me. My body type. My aesthetic. I’m intrigued. I had suspected there was something very art-full about disability. Not about disability at all. About Art.

Medical play In the Burning workshops and sharings, people do not ‘own’ medical diagnosis. They do not step onto a stage and proclaim their medically given label. Instead, we twist and turn around and under words. Most of us identify as disabled or living with disease (‘ill identified,’ indeed), others are queer activists or interested in the history and effects of racialization – all areas of culture-ing where labels and desirous bodies twist and turn into each other, where lived experience and language shift into each other with aching gears. But what claim does that give us, what new machines process, profess, produce our culture making, our reclamation, our remediation, our poetry-ing?

Burning Wiki: Cancer Writing Thread By Petra Kuppers Yesterday, someone I know was diagnosed with cancer. I asked myself yet again what I am doing with Burning: what would this person make of it, would he be offended, what are the connections between emotions and aesthetics at this juncture? In the Olimpias Anarcha history essay (later in this book), I speak at one point about how my own long hospitalization experiences make me feel closer to the experiences of the slave women with cut genitalia in that wooden shack in Alabama. Of course, in the essay, I immediately question this superimposition, this inadequate empathic allegiance. And yet, that does not diminish its power for me, the drive I felt towards initiating conversations about catheters, about shame, despair, and pain, about institutionalization and the

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giving in to the pre-set daily regimen of the hospital. But it continues to make me uncomfortable. I feel the need to protest too much. What about this case, our Burning? I write, and invite you to write, about cancer, cell change, bodily transformations that bring people to extreme circumstances, to a nearness of death. I have never had cancer. But I have been terrified, twice, with doctors urging biopsies, and circumstances conspiring to make this an ordeal. At the end of last year, for a good month, I contemplated much of what was to become Burning. A young doctor had acted quite hastily. In her clinic, she had looked at an inflamed, painful growth on my breast, got agitated, wrote me a script for a biopsy, and asked me to get it looked at that week, telling me about the possibility of inflammatory breast cancer. She didn’t send me for a mammogram, because that particular cancer does often not show up in them. As it turned out, though, there is no way to get a biopsy without a mammogram. I walked between departments on the day of my doctor’s request, later chased around on the telephone, only to be told that I needed that form and that one before they could even schedule me, and that the earliest available appointments were a few weeks out. I was frantic; friends began to make calls on my behalf. In the end, I decided to leave for California, deeply frustrated, quite panicked, and ready to just give up and acknowledge that these health care practices are not working for me (and in any case, survival rates for that particular breast cancer are very small, and if diagnosed, I would have had to make choices similar to the ones the character Guide makes in Burning, the performance script). I tried again: in Berkeley, the mammography clinic would not accept a Michigan doctor’s script. To be even seen within a fortnight or a month turned out to be impossible, at least without a more powerful doctor’s intervention than my young Michigan doctor (I was told that again and again in confidence by the gatekeepers, the assistants, the secretaries: I just had the wrong doctor here, and needed a Head of Department). She had meant well. It wasn’t cancer. By the time I was finally seen, if it had been that particular cancer, it would have visibly grown a lot, so I didn’t even really need a doctor’s pronouncement. The doctor certainly had scared me. No one was uncaring: but there were rules, and if only I stopped worrying and gave myself to the machine, I’d be ok. Or not.

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But how does all that compare to the moment of actual diagnosis? I just can’t say. So earlier yesterday, I was once again questioning the journey I was on, this long-standing fantasy cancer art project, ready to feel inadequate, inappropriate, and useless. Then, I went and heard the opening lecture of Robert Hass and Gary Sposito’s Environmentalism course, out in the Genetics building on Berkeley’s campus. A poet and a scientist are working together on this course, and listening to them, I found my way back to Burning. They spoke about relations between facts and values, about the ways that knowledge is created and new connections forged, and their pleasure in each other’s company, across their disciplinary divides, gave me a much-needed boost. Of course it is ethical to investigate personal values and path choices through a poetic, experimental, strange structure. Personal experience is not always a good marker of an ability to engage certain themes: although I feel a need to justify myself, claim something akin to ‘me, too, I know the pain,’ that is not really necessary to engage with the presence of cancer, toxicity, environmental entrainment, invasion, bodily change, and the ‘contamination’ narratives of diseases like leprosy and HIV+/AIDS. For these diagnostic labels pervade all our emotional terrain, and create the panic I felt in my doctor’s office. If you are open to bodily fantasies of imaginative scope, you will react to a cancer diagnosis differently from someone who approaches fictive and actual worlds from a more matter-of-fact place. My hysterical and yet productive imaginative journey in the face of a potential diagnosis of fatal cancer was very similar to what I then wrote about in Burning. There is no generic cancer experience. There are only individual journeys of facing change or death. Contemporary medicine might have undone the ‘c’ word’s death sentence. A lot of cancers are now no longer necessarily fatal. But in many people’s minds, death row still hovers near. While swimming together last week, a friend, a medical anthropologist, told me about an old man she had interviewed in her clinic. The man told her about how in the Soviet Republic of his youth, the cancer diagnosis equaled death; she related how in Japan until recently, doctors would sometimes not even tell patients their exact diagnosis, because to know that one had cancer would impair the fight for life, the healing. A bodymind needs hope to survive, and my friend spoke about how an immune

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system can be changed by emotions. Words can be swords, blankets, nourishment, and death. Words have culturally sanctioned powers. The poet’s perspective can help to un-anchor certainties, and to find breath in the deathly cancer word. But the poet is not the scientist’s handmaiden, translating their findings (and survival rates for cancer) into public knowledge. It is legitimate to plumb the depth of our cultural concepts of cancer, even in the absence of lived experience. We all live the experience of language. We move in the compass of possibility that words leave for us. Words wreck and heal. Stories can hurt or help. As an artist, I have a mandate to change words and stories, undo them, run them backwards, put them under my own lens like a piece of tissue under a scientist’s microscope. I have the responsibility to go off script, to invent new scenes, and to breathe into this word that scares us: cancer.

Burning Wiki: Cancer Writing Thread By Neil Marcus Fantastic voyage There they are, including Raquel Welsh. All in their glamorous tight knit rubberized sci-fi outfits about to be miniaturized and injected into a human bloodstream in a miniaturized submarine. They only have a few hours to accomplish their mission: to relieve a blood clot by clearing it with laser guns. One scientist must swim outside the sub to get a better trajectory. White blood cells begin to attack thinking him an alien virus. Uh oh ! This was my first introduction to medical views of disease such as cancer, stroke etc. I was 9 or 10 years old.

Skin performance In the short performances of 2008, we opened with a monologue about bodily change and nano-invasion performed by Kelly Rafferty.

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Nano Flowers JOAN: My skin calls to crawl and I know that it will crawl, soon, here, if I drink the fresh water. Wait just a little while, with the fresh water, and it will crawl like my mum’s claws scrabbling over the granite kitchen counter. Her fingers began to crawl, like her flesh. It wasn’t milk flesh, it was ant flesh, she used to say: ‘I have ant flesh, Joanie, they grafted it onto me, and now it wants to go home.’ ‘Watch my little fingers traveling, Joanie, look at them. I do not know where they want to go, but there’s a big hive, a huge hive mind, and it knows. It KNOWS, Joanie. I am just a carrier. Nano-bits of ant flesh have replaced my milk-flesh. My poor Joanie: they will come for you. For you. You better get ready, Joanie, keep yourself nice and clean, scrub up, little Joanie, scrub up and get that pink skin glowing ready to be taken to the ant city.’ Mom. It was ants, and hive minds, and it was nano-bots and hairdryers that leave bits of metal in you as they dry your hair. She knew she wasn’t all that human anymore, and her skin had all the markings of the comings and goings, of the ants and the nano bits and and the nano silver hair dryer and the heavy metals that assemble under her skin like a cyborg, like Arnold Schwarzenegger when his head burst open. Maybe I won’t die. Who am I to say what’s happening, which story is true. Maybe my skin will burst into flower. At least it won’t be a map of saltcrusted red algae fields, like her hairdresser’s hands. I won’t be ant paths, like my mum’s scrabbling. It will be my own flowering. When my skin flowers, it will be a rose bush. A hibiscus flower, silk smooth. It will be an iris. It will look out steady, with its blue eye, at the moon. It will bloom in the desert, one night. I will bloom.

Burning Workshop Response – Harold Burns i will know your body by the buzzing in my toes here we reconstruct bodies, beyond the battered landscapes

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of soft pink scars, silver hair and stress. our unbroken bodies breathing across one another acknowledging unbridgeable distances, unshared experiences – that gap – that space between skins – each a river, a mountain, a people and the alone we all return to

Burning Wiki: Cell Image Freewrite by Leora Amir I pierce it. My body is apparently scarring itself or being scarred. ‘Safety and Danger’ is the theme of my partner’s art series which includes actual size images of objects that are both safe and dangerous – safety pins, safety razors, safety matches, safety glass, condoms, and syringes. I pierce myself. I poke myself. I stab myself. I sting myself. I hurt myself. I scar myself to try to prevent scarring on my brain…or whatever it is that will or might or probably will cause a grab-bag of fine symptoms or exacerbations, flare-ups, if you prefer hot language. One kick in the pants after another. One mystery kick in the ass after another – a little like life itself. I am just beginning this journey, although I am 8 years in. Living with the maybe diagnosis. Now living with the diagnosis Question Mark. A disease with an improvisationary mind. Yeah, a kick, but oh, the pants, and oh, the ass. Hardness. Kick. Thrill. Pain. Burn. Expectation. Anticipation. Tenderness. Soft. Round. Fleshy. Resilient.

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Burning program note, Subterranean Arthouse, Berkeley, October 2009, as part of Butoh Dance fiftieth anniversary festival The Installation/Performance Score The two stations are interactive and come to life when you engage with them. – Station A hopes to draw you into a movement dialogue, to explore different movement patterns and their meeting points. Your presence will activate movement and drawing, a movement visualization that focuses on the changing space between people. – Station B: In the back station, the video behind the golden wall will show you how you can interact with Neil before the wall. You have the option to use a blindfold when you explore movement with him, to allow you a different sense of privacy and touch. In the second half of the performance, we invite you to explore cell movement with us, to engage in an alchemy of influence. Corporeal Distance The performance installation takes place inside the art exhibit Corporeal Distance. Sadie Wilcox uses large-scale drawings to document somatic movement sequences and improvisational cripchoreography. The work on paper includes graphite, conté, and acrylic media depicting multi-layered configurations of physical gesture and kinesthetic interaction.

Burning Wiki: Burning and Visual Art Thread By Sadie Wilcox Graphite drawings provide an entrance to talk about cancer. In the hospital setting I work with oncology patients. Cancer diagnosis and treatments are everyday topics. Outside of the hospital environment, however, talking about cancer becomes more difficult. The privacy of my patients competes with the need for a public discourse. In response to this concern, I have begun to approach the Burning collaboration through the medium of visual art. This graphite sketch, an inverted reference to the human body, provides an alternative vehicle to enter into an exploration of the movement, of cancer, and of multimedia approaches to health and healing.

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Figure 12 Drawings by Sadie Wilcox, part of Burning Wiki collaboration and Corporeal Distance exhibit (Photographer: Sadie Wilcox)

In other Burning images, a mixed-media collage incorporates organic and inorganic elements. Cut paper, glue, tape, and white paint obscure graphite line drawings beneath the layered surface. Cellular and plant forms are embedded with heavy metals, titanium white toxicity, which create a wrinkled, skin-like texture on the page. As a burn survivor, my own skin echoes the creased, layered quality of the original image. The cellular formation of my hypotropic scars exposes rich layers of texture, curve, and contour.

Burning Workshop Response – Harold Burns I give you this ‘Japanese line drawing’ You give me ‘napalm in the morning’ words as gifts refigured beyond recognition

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Response connect Below are three responses to performances in August 2008, at the Bare Bones Butoh laboratory in San Francisco and at the Moment’s Notice performance event in 8th Street Studio, Berkeley. We gathered the responses days after the event, by emailing people we knew in the audience, or mining the Wiki for responses. We link back to the opening discussion of this experimental chapter, about ‘desired outcomes:’ does this measure the audience’s reaction? How do we measure ‘engagement?’ To talk about how one felt while performing, or while watching performance, is notoriously difficult. What energy transfers in audience’ and performers’ comments? We do not have negative comments – who would tell us what they did not enjoy? But these responders are artists themselves, part of the improv community, and their comments reveal more than many audience remarks, open up registers and categories of associations. ‘I was struck by the energy of the group, how having the audience sit in a circle intermingled with the performers shifted the feeling in the room. a word to describe my experience of the piece is ‘timeless.’ stepping out of modern, fast-paced time into a more spacious, organic experience of time.’ ‘a coming together a weaving a simmering pot of spices and green beans and sprouts and earth a lovely fortunate time to be together to hold to love to share. thank you!’ ‘I feel a flow and connectedness and focus with the performers, through sight and feel…and to the circle through sound, and a dust-like still vibrating attention.’

Performer’s Response By Eric Kupers I recently performed in an in-progress Burning showing. As usual when doing something with Petra Kuppers and Neil Marcus, it turned my expectations upside down, challenged me, and invited me into the warm, soothing waters of radically inclusive dance. Due to scheduling, I couldn’t be at the rehearsal, so we met 2 hours before the show to talk about what would happen. Petra gave some language about Neil being a gardener, and letting him ‘garden’ us, and that we would bloom and wilt, following the core performers for cues, but also being the link between performers and audience. There was no more structure than to blossom and wilt, relating to

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Neil, relating to Petra and the other dancer rolling on the floor, and being a model for what the audience could do too. It was wonderful. I was put ‘on the spot’ in a frightening and transformative way. I couldn’t rely on fancy dance moves, athleticism, choreography, or even a clear structure. I just had to be in my body, witness what was going on, and respond minimally. I was asked to stay present, in a way that I’m unused to onstage. Maybe people were watching me, maybe not…maybe I was doing what Petra and Neil intended, maybe not. There was such openness in their instructions and presence, that I also knew I couldn’t really mess up. I loved it. Loved the simpleness, the non-performative performance of it, the dissolving, oh so gently, of the walls between performer and witness, movement and stillness, special event and ordinary life. It pointed to physically integrated dance as both a field of exploration into inclusive ways of moving, and as a teaching that there isn’t something called ‘dance’ that is separate from the way each of our bodies move, every day, across a room, on and off the toilet, in bed, at meals, in conversation, to turn and respond to a surprise. We slipped into and out of our ‘performance’ as simply as stepping across a threshold. No unnecessary drama. Nothing out of the ordinary. Yet, so rare an experience in the performance world. And so we work on: drifting in and out of focused attention and open play, breaking bread, hanging out, sharing meals and many personal stories that won’t get told in public essays.

Note from a Cyber-Participant of Burning By Elizabeth Walden I think that in a real encounter everyone comes away changed; indeed, the terrain itself is changed by what has happened upon it. I was around when the Olimpias were working in Rhode Island, working in and on the landscape in order to explore sensuous embodiment in relation to the specificity of place. The work left marks all over the place that year. There were not only the workshops, but all the art work that the whole process yielded. I didn’t intend to get involved, but kept getting drawn in different ways: as an interlocutor, meeting participants, looking at the various exhibits, discussing the video editing. And I guess without even knowing it I shared the

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encounter, by seeing the possibility in the collaboration, by the fluid use of various media, by the process as a form of activism. Burning draws me, reluctant me, in even more readily, allowing me to read if I want and talk when I want, respects my own limits as it invites me to participate. The Wiki format allows various sorts of interventions, from short immediate comments to longer interventions, to group discussions of a topic. The encounter, for me, is a virtual one, but my participation with the Olimpias always has been that. What the Wiki permits is the transparency of this encounter, indeed the inescapability of it.

Neil Marcus reminds us what Burning can bring to our knowledge production: an ethics of reflection, pause before performance action, the attention to the connections that move through our cultural, social, individual, and internal bodies, the threads knitting up.

Burning Wiki: Cancer Writing Thread: By Neil Marcus abc website: Stand Up To Cancer is launching a new movement to attack cancer once and for all by pushing promising scientific breakthroughs to the finish. Here we stand, on the verge of unlocking the answers that will finally conquer the devastation that is cancer. We now understand the very biology that drives cancer. With knowledge gained from the mapping of the human genome, we can now target the genes and pathways that are involved in turning normal cells into cancerous ones. We are on the brink of possessing a toolbox full A TV SPECIAL SEPT 5TH how media approaches DIFFERENCE how burning approaches the subject…………. ETHICS ETHOS PATHOS VINES/THREADS of perception

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5.3 RHIZOME: SOMATIC POETICS Communicating deep feeling in linear solid blocks of print felt arcane, a method beyond me. (Audre Lorde in an interview with Adrienne Rich, Lorde, 1984: 87) How do you disclose? In writing, in spoken words, in movements, in sounds, in the quiet energetic vibration and its trace in discourse? Is disclosure a narrative account of a self, or a poetic fragment, sent into the world outside the sanction of a story or another recognizable form? These are the questions that guide my exploration in this essay. I meditate on them from the vantage point of my own self-narrative, as a community performance practitioner and writer, a poet whose artistry, in many ways, relies on the willingness of others to disclose, to open themselves, and yet who feels ambivalent about narrative disclosures. What I share with you, reader, are my thoughts on what some may call compassion fatigue, on boredom, on burn-out, on the inability to be moved by someone’s hard-won right to story her life, to tell his narrative, to disclose her pain. I find it ironic that for as long as I can remember, my attention has often wandered when someone tells me their story – how this cancer was diagnosed, what the doctors did, how she coped, how he garnered support, how ze survived, how that person died, how she lived. The story of how addiction took over hir life, how she craved, how he hated, how someone sponsored her, listened to her, how he is making amends, how she copes, how sie gets on with hir life. The story of being born this way, being prodded this way, being paraded in front of doctors just like this, being operated on, being photographed, being inappropriately touched, being neglected, being forgotten, being unloved, being lonely. Listening to these accounts, my attention does wander, even though this is the heart blood of my chosen life – these are the people whose company I seek, with whom I feel comfortable, with whom I make art, with whom I make a life, to whom I disclose my own stories. But somehow, when we rehearse these stories in each other’s company (for rehearsal, polishing, is how I think of storytelling), I drift. In this performance-as-research chapter, the last of three witnesses to a performance experiment, I want to draw attention to what does draw my attention in community art situations, what halts my drift, and allows me to find connection beyond a story that is unique and so special to this individual, but which I feel I have heard so many times.

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What grabs me, again and again, lies beyond the words, beyond the ‘I did this… and that… and they did this… and that,’ beyond the story of hardship and injury, recovery, and overcoming. My moment of connection tends to happen in the warmth of this hand in mine. It occurs in the material connection that seems to well up between these gray eyes and my own deep gaze. I can feel the skin change its electric tonus as I am listening to the uncoiling account. There’s a timbre in the voice that I follow, even as I lose the words. In the moment of verbal disclosure, physical intimacy changes the time and space of encounter. And I know that the people I sit with are well aware of this – it is not lost on them that my attention isn’t wholly focused on the story they are telling, that I will have forgotten core details when next we work together. But they are also aware, I believe, of those moments of energetic connect that happen through, beyond, and underneath the narrative disclosure. There is a physical opening occurring here, right now, when I tell this account to you, when you sit by my side and I confess that I can’t always keep the stories of my current community participants straight, that I forget names all the time, that I do not really wish to put together a show with lots of testimony, that I’d rather have single power words floating in space. Orientation towards the frame: a poetics of vibration How do we witness the uncapturable in performance, how do limits of sharing fuel performance practice? As I continue to look at the artistic processes of community performance projects, I point out traces of this other attention, this embodied poetics of vibration, the heart athlete’s performance practice. One of the frames through which I construct this chapter is a focus on the formal in practice: on an attention to the shapes of narratives, and on the ways that formal experimentation can open up spaces beyond and beneath the narratives that can sound so familiar. An attention to the formal in community practice is often confused with an elitist drive towards quality, towards a modern or postmodern play with forms that stands somehow in opposition to how ‘ordinary people’ construct their lives. But there are other ways to think about ‘the formal,’ ways to question the naturalness with which stories are told, poems are written, the ease of an ‘I,’ the separation between self and those others (who hurt, or love, or persecute, or free), the embedment of the experience of thought in institutions of thinking. Elizabeth St. Pierre frames her own struggle with burn-out, falling silent, and the need to just keep going even if the ethical issues involved

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in continuing her research overwhelm her. She charts out her thinking in reference to Michel Foucault’s comments on how to transgress into a realm of knowing that stretches a self, allows it ‘get free of oneself’: Getting free of oneself involves an attempt to understand the ‘structures of intelligibility’ (Britzman, 1995, p. 156) that limit thought. Foucault (1984/1985) explaining the urgency of such labor, says, ‘There are times in life when the question of knowing if one can think differently than one thinks, and perceive differently than one sees, is absolutely necessary if one is to go on looking and reflecting at all’ (p. 8). (St. Pierre, 1997: 204) Can we think outside the structure of story, outside the habits of thought that make us sense and position ourselves in time and space, in power and knowledge? Is there a way to change the frame, into a different format, to ‘change our mind’? And even if there is not, if the structures of legibility always contain what we can think, there might be riches in that borderland, the border country towards the intelligible, the places where difference presses close in an uncontained, unstoried way. To think differently, to get free of oneself: all these concerns resonate deeply with me, and with the ways that I wish to engage in community art practice. Like St. Pierre, I try to embrace Deleuzian, poststructuralist approaches to story and self. ‘I’ wish to perform and to write at the moment when the chorus of the voices that make up my ‘I’ presses against my skin, from the inside and the outside, query the notion of ‘skin’ as barrier. But can ‘I’ stay in that vibrational moment? This chapter is not an exercise in quotation marks, but it is a chapter of many I’s, and – imagine you see this chapter performed – I invite the vibration of the hand gestures that mark small breaches in the air next to my head as I speak. I get thrown off those particular theory horses again and again. But curiosity drives me on, and it is a curiosity nourished not by the absence of (language) connection, by isolation, but by the fullness of those movements of touch and density I described above. That materiality of the tearful eye gaze, the electricity of those fine skin hairs, the voice shivering me: these are not essentialist connections that somehow reveal or disclose a person to me, but these matters make the boundaries of ‘me’ and ‘person’ vibrate. Disclosure here becomes the density of living itself, the flowing, non-essential process of shaping lives together.

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Figure 13 Burning circle after procession onto Port Townsend beach, part of a participatory performance for Goddard College’s MFA in Interdisciplinary Art cohort (Photographer: Linda Townsend)

Deleuze and Guattari (1987) have called this bordering ‘deterritorialization,’ always already bound to the reterritorialization that allows the naming of the experience. Breath-touch on the limits of territories. This is not a shift from verbal to a privileging of non-verbal communication, finding richness and truth in one and less in the other. Nonverbal communication can be just as conventional as spoken language. When someone’s hand reaches out to touch someone who is upset, that gesture can feel ingrained and predictable, and the chain of caretaking that is initiated by the gesture can even hinder the flow of disclosure the crying or upset person might be engaged in. Likewise, I believe the common form of the circle, one I use in nearly every community session I lead, does not really create more community than another format would engender. The repetition of the circle just has something very comforting, it can allow all participants to drop into a certain kind of ease that is different from the everyday, but the rules of that ease are not open – circles territorialize as much as they deterritorialize: here is an inside, here an outside. There is nothing inherently radical in them. But circles might create a radical shift in communication situations when they break open other encrusted forms – an orientation to a leader, a group versus individual arrangement, or the singularity of islands out in space. Circles bring lots of multiples into contact, they gather tribes,

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Nancy’s community. What provisional I’s we extract from them in each instance – that is our ethical challenge. Bodily fantasies on the limit: Burning Even deeply felt inner experiences do not escape the generic, and there is lift available in the vibration between the shared fantasy and the personal fantasy: that’s the journey of the last part of the Burning experiments, the participatory score that guides us into and through our cell imagery. In the last part of these evening-long Burning performance happenings, we use meditation techniques to shift the space and time of participants. We invite people to lie down or otherwise become comfortable (or to observe in quiet). I then begin to lead the part of the evening that most closely dovetails with my personal research exploration. With a slow and deep voice, I ask people to breathe, to become aware of the movement of breath through their bodies, and of the hollows filled by the luxuriating breath. Once participants are deeply relaxed, I take them on journeys that activate bodily fantasies. I ask them to breathe in colored lights (and leave the specific nature of the colors to them). I invite participants to become cell bodies – heart cells, liver cells, skin cells – and to explore the properties and sensations of these cell environments, through both internal and external movement. ‘What is the surface, what is liquid, what does the granular space of the cell feel like? How does the cell membrane move?’ When deeply involved in these explorations, I move through the room and give people individual encounters by whispering to them, one by one – letting them respond bodily to the idea that their cell encounters alchemical elements like gold and silver, lead or mercury, or other deeply culturally laden substances like oil or blood. When I am finished with my individual instruction to each participant, all around me, people are moving gently, undulating, contracting and expanding, their eyes closed and their faces full of concentration and openness. Some have dropped out of the meditation and are sitting quietly against a wall, observing what is going on around them. Some move more than others, some whisper quietly to themselves. When people are back in spoken-language-time, in sitting-uprighttime, we all talk about the experiences, and about the cultural body knowledges, half-forgotten healing practices, that seem to emerge like Jungian archetypes in these movement journeys. During the meditative/slow movement sequence, some long-standing Olimpias performers in the room had imagined themselves as cancer cells, and gently moved with the physical imagery this brought to them. In my

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meditation invitations during the participatory performance, I do not invite community participants to move as cancer cells – it seems to me to require a more careful approach, a longer developmental period, to enter this darkly signified state, even though Olimpias performers do by no means all move tragically, darkly, or despairing when entering ‘cancer movement.’ In workshops in the weeks leading up to the participatory performances, Olimpias collaborators entered these experiences of cell movement, different organ parts, and cancerous movement many times, and had time to debrief and reflect on their experiences. After the immersion exercise of cell movement, we ask people how it felt to lie and move in a space that also held cancer cells, and if they noticed different movement patterns, different imaginaries of cell movement, around them, and how that felt. This leads to rich discussions, testimonies of poetic embodiment, snippets of disclosures, glimpses of personal stories, but the echo of embodiment seems to keep the full, long stories at bay, and outside of the immediacy of our sharing. As I look around myself while listening, I see some hands intertwined, some gentle touches, as people rock in the memory of their meditations. now your light shines very brightly but I want you to know your darkness also rich and beyond fear (Lorde, 1984 87) My research aim with these movement meditation sequences is not to find essential truths about human bodily imagination, but to explore the limits of somatic experience and cultural expression, to make artful life experiential and to hence create new tools for living in the chemically saturated world we all inhabit. I need to add here that these are my personal aims for Burning – as the preceding collage showed, all associated artists have their own journey, their own reasons for being involved, and there is no necessary consensus – just a shared interest in transformation, the cultural images of disease, disability, and addiction, the effects of invasion and touch in our lives, and how embodied poetry can help us live. A number of collaborators worked together in the participatory Burning performances at

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the Subterranean Arthouse, two years on from our initial explorations, now in 2010. The Subterranean Arthouse is a small Butoh performance space in Berkeley, located in an old shop, complete with an open membrane into the urban space – a shop-window and glass door. Lots of things happen with and through us during these evenings, not just my movement meditations. One of my colleagues, Sadie Wilcox, sets up live drawing scenarios, sketching the space between people. Chun-shan (Sandie) Yi creates silhouette cutouts with participants. Dancer Harold Burns engages participants in contact dance, and invites a crossing of boundaries in and through presence. Neil Marcus invites people to move with him, gently, and blindfolded, and to feel his spastic embodiment and his facility with tender touch. Elder performance artist Adam (the late Paul Cotton) acts as a host, and guides dance actions on a sofa. Mark Romoser of the Silicon Valley Independent Living Center dances gracefully on the floor. Amber diPietra’s poem about cell movement and the journeys from one to another sounds out in the space, set to music by Mindy Dillard. What I am writing about here is my personal account of the actions I engage in, one facet of these evenings – choreographing participants’ inner experiences. My desires echo Lorde’s poem: ‘I want you’ – there’s a sensual desire in me when I set up these movement meditation scenes, a delight in an erotic language and voice touch that is not predicated on sexual contact, but on intimacy, and on the borderlines, the membranes of the ear and the skin; ‘to know’ – I continue to be intrigued and obsessed, as an artist and as a critic, by the way people envision what goes on inside them, and find agency, poetic lift, in mobilizing these knowledges, in reaching from the images of bodies to the life of bodies in the world. ‘your darkness also’ – not just the bright light, no, but also the fears and the strengths that hide in the blood and muscle, in the living pulsing shadow of the heart muscle pumping away, in the dark purple lobe of the liver wrapping itself around my middle and purifying, detoxifying, sifting, whatever sweeps through this body. These meditative slow practices can destabilize people. Some report that they experience something quite real, quite deep, and that there is transformation to be gained in these dream journeys. But the framing within which the Burning workshops take place questions immediately the ‘authentic’ of this experiential disclosure. The shared, the cultural, the heritage, and hidden knowledge of being encultured quickly complicate any essence. This is where the element of formal enframing enters into the immediacy of experience, and into the narration of a stable, autonomous ‘I.’ Our deepest cellular experience, the sounds and

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movements we listen to when we are deeply relaxed, are still cultured, are still shared, come to us in genres and stable image complexes. This form of presentation also questions practices of self-disclosure that participate in trauma narratives through what Canadian sociologist Erving Goffman has called ‘impression management’ (1969: 208). Goffman researched the ways we play ourselves as roles in specific contexts, how we manage acts of disclosure and knowledge, how we deal with stigma and stereotype. Impression management refers to the ways people present themselves to others, using conscious or unconscious techniques to shape their image. In Goffman’s framing of these acts of self-presentation, performance, and dramaturgical choices are foregrounded: impression management is an interactive, dynamic process. Disclosure becomes a semiotic act, not a ‘natural,’ unfiltered display of an ‘authentic’ self, but a complex engagement with choices. The naming and claiming of bodily trauma can be part of the repertoire of selfrepresentation, a (stock-)narrative that enables recognition and hence communication. The full traumatic narrative arc (injury, reaction, overcoming) can here be a way to manage the discomfort of others, to navigate potential stigma. In Burning, by-passing verbal self-disclosure and the recitation of experience, by encountering ourselves in dialogue with our insides and with foreign elements in this experiential way, there is less space for people to speak managed, filtered, personal truths. I find that these truths tend to either close down communication if raw and direct, or become told as a story in its complete, polished arc. Either form leaves little space for dialogue. After each journey through bodies, cells, through liver and heart, breath and membrane, audience members need to unfold for themselves what they felt, and how that felt, and how that relates to the stories of cancer, environmental toxins, and invasion that they know. It is not fair. We should be able to have dialogues about ‘I am poisoned, I live with environmental sensitivities, and they constrict my life,’ ‘I survived cancer,’ ‘I have multiple sclerosis,’ ‘I am autistic,’ ‘I am addicted to certain substances,’ ‘I am injured by certain substances.’ But tragedy tugs at these stories, puts their narrators into the realm of the inviolate, as a community quickly feels sorry for these persons, or else feels attacked by them, in particular if one does not know how to help. Yes, we know this story: we can manage her identity for her, and his social role can click into fixity. The cultural weight of these narratives hinders flow, becomes heavily stigmatized. Many contemporary writers on the subjects of cancer and personhood recognize the (not always negative) aspects of this stigma, and mobilize them in their narratives.

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As Marisa Acocella Marchetto in the Cancer-Vixen: A True Story puts it: ‘Play the cancer card!’ (2006: 107). The cancer card appears in this graphic novel memoir in the form of a full-page spoof advertisement, and the card is presented as a way to get out of unwanted social obligations. The cancer card is perfectly designed to create the communal cringe and the hasty retreat. If you have cancer, you are beyond the pale, and ordinary rules of behavior no longer apply. People who experience these life-changing transformational diagnoses often know very well how isolating it can be to name one’s personal story, and many are very careful about how they manage disclosure, and know that if they choose to disclose, they have to manage other people’s discomfort, and they become ‘ill identified’ in many ways. In Burning, stories of injury and hurt swing in the room with us, all of these stories are mentioned in our performance program, but none of them are specifically given individual voice in our performance (although some participants chose to come out in the sharing circle at the end of the event). No one owns the diagnoses, or the identity of ‘survivor,’ and the presence of these disease complexes is instead dispersed, performatively enacted, and brought in experiential contact with all members of our temporary group. When you leave our round, you most likely still do not know who has multiple sclerosis, who has substance addiction issues, who is sensitive to environmental toxins. Communication demands territorialization, and formal experimentation alone, unanchored in lived experience, easily alienates. So how can disclosure and the storytelling self find some lift, and yet some connection, too? How can the Burning cell imaginary become both deep, emotionally rich, and formal, pointing to its constructed nature? That’s the question that each of the Olimpias’ community performance experiments begins with, and ends with. As this book continues on its path, there will be many journeys that walk on the limits of tentative verbal disclosure and tentative shared embodiment, and that dance to the embodied poetry that emerges between these modes. Come and sit by my side, and we share in this path river flow border cell life.

Part 3 Memory Touch

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6 Anarcha and Felaweshipe

Part 3 turns to myth and history, mythical storytelling, personal history, the impact of time on humans, and the impact myths (of slavery medicine, racialized embodiment, cross-historical empathy, relative privilege, activist love) can have on contemporary bodies. You will have to read through a few pages to get the ‘facts’: to the medical historical slavery medicine case around which this part revolves. The embroidery, the veiling, the accumulation of text and performance is deliberate. In these chapters, writings toward and around a slave called Anarcha function as a lens that bundles glimpses of cultural formations of identity, race and gender. Artful social justice work requires a sense of the poetic valence of concepts that shape cultural thinking. Hybrids, freaks, kawaii (Japanese ‘cute’) characters, cyborgs, monkey tricksters, fantastically intersected lives: these are the strata through which a disability mythologist travels, and I have to be aware of the dangers of disarticulation, the problems that arise from easy celebration without grounding in lived reality, in the challenges of contemporary inequalities. But usually, when I look at the motivation of theorists who use image complexes to capture the processes of embodiment and en-mind-ment, and at the way their methods are shaped by the motivation to find openings for breath, I can see how parallels can work, how feminist, queer, class, critical race and cripple thought can align on the hinge of desire.1 I am using my own fantasy to call for brothers and sisters wherever I can find them; I use my own desires to construct backwards, to confound what I do know, to trip myself up as I go, with Benjamin, botanizing on the asphalt, or in the corridors of the library stacks. Here is one of these finds from the stacks: in a book on medieval history writing, Getting Medieval: Sexualities and Communities, Pre- and 153

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Postmodern, Carolyn Dinshaw discusses the creation and projection of community for subaltern groups. She writes: A queer history focuses on sex in particular as heterogeneous and indeterminate, even as it recognizes and pursues sex’s irreducible interrelatedness with other cultural phenomena. (1999: 13) It is the presence of affect and sexual energy that translates itself to the historian desirous of community: not the actual emergence of what we, today, understand parsed sexual practices to be. Indeterminacy is the operant principle in Dinshaw’s historical project, lacunae in premodern lives opening up potential contact zones to postmodern ones: The queer historian … is decidedly not nostalgic for wholeness and unity; but s/he nonetheless desires an affective, even tactile relation to the past such as the relic provides. Queer relics – queer fetishes – do not stand for the whole, do not promise integrity of body; they defy the distinction between truth and falsehood, as do ordinary fetishes, but they offer the possibility of a relation to (not a mirroring or completing of) something or someone that was, or that was thought, or that was specifically prevented from being or even being thought. ‘Being prevented from being or even being thought:’ this formulation can also speak to people who investigate disability cultures and their histories, these strange and complex and hardly thinkable things, these emotionally charged and ambivalently regarded actions, insistences, performative acts, speaking into being. Wrenched out of its context of hypocrisy and stagnant, nostalgic longing for wholeness, the queer Pardoner’s preoccupation with the matter of past lives can reinforce the queer sense of the need for and prompt the creation not of the kinds of books that would please ‘historians,’ as Foucault sneered, but rather of another kind of ‘felaweshipe’ across time. (1999: 142) I can use Dinshaw’s approach to touch history for crip culture: calling into imaginary being a cultural formation by projecting backwards,

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finding moments where a witnessing sensibility can locate fantastical identifications in the lacunae of the past, a felaweshipe, strange yet recognizable. Dinshaw’s alternative sexuality-based historical project opens up new space in thinking historical touch. In the historical/memory projects in this section, I use a similar strategy: to extend a witnessing touch, to call for a complex and reflective collective politics of embodiment. What I sketch out here in these pages as my understanding of method is akin to an ethnomethodological approach. My own desires as I identify with the object of study shape my understanding of the methods I can use and my suspicions of the languages available. So I embrace the methods of the myth-maker, the partial and loquacious curator of the Wunderkammer. Desire, recognition and distorted mirrors, community and the (im)possibilities of empathy should not only be part of the objects we study, but can be part of the very methods we employ.

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Memory Touch

PERFORMING ANARCHA

At issue here is the precariousness of empathy and the uncertain line between witness and spectator. Only more obscene than the brutality unleashed at the whipping post is the demand that this suffering be materialized and evidenced by the display of the tortured body or endless recitations of the ghastly and the terrible. In light of this, how does one give expression to these outrages without exacerbating the indifference to suffering that is the consequence of the benumbing spectacle or contend with the narcissistic identification that obliterates the other or the prurience that too often is the response to such displays? This was the challenge faced by Douglass and the other foes of slavery, and this is the task I take up here. (Hartman, 1997: 4) In my hands are small jewelstones, hard and cool and smooth. I bought them in a gem store in Ann Arbor and carried them with me to various residencies, giving them gladly to strangers to touch, collect them again, and use them somewhere else, thousands of miles away. In a darkened dance studio, I watch people with their eyes closed, often a faint smile on their lips, fingering these stones, and feathers, pearls, a mask, a dried starfish. Then, on a gentle invitation, they reach out, still with their eyes closed, and hand their object into a stranger’s hand. There is a lot of trust involved: trust in us performers when we first hand objects to them, people who don’t quite know what to make of this performance event but are willing to get involved. There’s trust in reaching out without sight, on the command of a quiet, warm voice, and meeting a stranger’s skin, temperature, and touch. Having engaged in their exchange, audience members explore the new object between their fingertips. Weigh it. Feel its textures. The shape it makes on their skin. Smell it. Listen to the associations that come up, to the sense memories that bubble into the present, to the power of objects. As the performance continues, performers walk or wheel by audience members, touch them gently, having asked permission, or dance close to them, whisper words, and create a sharing circle that never quite utters the secrets at its heart. This is part of an Anarcha Project sharing. My collaborator Aimee Meredith Cox brought the objects exercise to this particular residency at the University of Washington, in 2007. We have had two days to work with dance students and other interested people, to create a performance installation about memory, the touch of time, ethical witnessing and the histories and possibilities of our bodies. Carrie Sandahl, Aimee,

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and I have been leading this residency and are now orchestrating the final sharing, as part of the Society for Disability Studies conference. About forty people sit around a central bare space in the dance studio, with other open spaces for movement work between the chairs, around and behind audience members. We open our show with the weight of stones and implicate our witnesses in the stories we do not tell. There are duets of people leaning into each other, mirroring each other, dancing poetry. There are glimpses of the story of a child in a hospital, there to get yet another operation to lengthen or straighten limbs, a child alone and frightened. There are stories of gynecologists and eugenic impulses towards disabled mothers. There is muscle memory of African-American theatre history and women’s fight against subjection.2 There are stories of contemporary black women’s denial of self-care in a machine that pressures them to perform. All these stories are fragmented, incomplete, and point back to a story we never tell straight out in our residencies, the story of Anarcha. We don’t tell it, because we have found out in our performance experiments that telling it re-victimizes, releases anger and fear, arrests communication. So all workshop participants who come to explore the connections of disability culture and African-American culture with us first read the essay that follows these introductory comments, the Anarcha Project essay. And then, we touch stones and history together, and bend them, queer them, into crip relics, suffused with triangulated desires, not for wholeness, not for empathy, but for the strange word, felaweshipe. We sing songs, we dance body histories and we acknowledge historical and contemporary hurt and pain. Our shared performances emerge from our desire to reach out and touch a stranger. In the materials that follow, a historical essay which functioned as communal touchstone for all our residencies and workshops, a performative lecture script, and a process report, the story comes to life in many different ways: in history, paintings, medical discourse, in kinesthetic bodily response, in drama, in song. How do we translate these stories into contemporary movement, into something that can move us and people beyond our circle?3 With eyes open and closed, in kindness and in anger, in close encounters and in alienation, we touch without knowing each other.

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6.2 THE ANARCHA PROJECT ESSAY: REMEMBERING ANARCHA The object of this essay is two-fold – presenting a historical case ‘objectively,’ as a past event that wounded the bodies of women, and as an entry in the histories of disability culture. And at the same time, my object is to enact in my writing my objection: my attempt to find ways of distancing my story from the only way we have of knowing of it, the medical archive, the clinical distance of description. I am talking about this: a young white doctor in Montgomery, Alabama, in the 1840s developed operative procedures to close vaginal fistulas, that is, tears in vaginal tissue (caused by prolonged labor, or by inexpert use of forceps). Fistulas cause constant leakage of urine, and, if the fistula affects the rectal canal, fecal matter. The doctor developed his methods through extensive experiments executed on the bodies of a number of un-anesthetized black slave women. He operated on at least one of these women over 30 times. Reader, do you not come up short, arrested, even against these deliberately flat and unemotional sentences about ‘what happened?’ The ‘objectivity’ of the medical, the scientific way of knowing, sets an object – something to look at, diagnose, categorize. But I ask you, as I write, to resist the distance of the objectification. What kind of writing in the realm of medical history can object objectification, and undo the distances both archives and language itself place between us? This is the horizon on which this essay teeters – and teeters precariously. The archival record, authored by the very doctor whose practices are so problematic, has given up three names: Anarcha, Lucy, and Betsey. These are three of the women at the slave clinic in Montgomery, Alabama. The doctor operating on them was James Marion Sims, the inventor of the Sims speculum. Each time we as future healthcare providers pick up a speculum we should think of Anarcha and the unimaginable sacrifice that she was forced to make for the development of this commonly-used tool. Let us never forget. (Alexandria C. Lynch, website) Let us never forget. Black medical student Alexandria Lynch voices her anger at the forgetting of the black women across whose bodies US medicine was advanced. But remembering, honoring, and ethical witnessing are problematic and difficult, and collapse too eagerly into containing narrative.

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How can I talk about what it is that we should not forget? Already, ‘naming’ makes complex my task of writing: the three names and title of Dr James Marion Sims, together with the ‘father of gynecology’ label given to him, outweigh Anarcha, Lucy, and Betsey, the first names of the three women we know, with many others lost to history, their names unrecorded, their offspring unknown, their lineage diffuse. These women were slaves and the subject of multiple experimental operations. To merely repeat ‘what happened,’ what gynecological operations they went through in the rural town of Montgomery, Alabama in the 1840s, without anesthesia, and why, with medical labels and time-lines codified and sanctioned by the medical archive, is already to perform the victim narrative for Anarcha and her fellows in that make-shift hospital. So already at this point, I have to think about the responsibilities of historical work, and of the power of naming. Sims himself is the only source about Anarcha’s life. He wrote an autobiography, published posthumously (by a few months) by his son in 1880. Earlier, he also published much about his discovery of a cure for fistula, and his work at the slave hospital, in a monograph, as well as in numerous talks he gave once he became a fashionable doctor (working on white women) in New York, and on his European tours. Sims, who was friends with P. T. Barnum, knew how to present himself, and the word ‘dandy’ appears in the literature surrounding him. Against this onslaught of words celebrating his work, where is space to remember Anarcha and the others? In black popular cultural historian Janell Hobson’s work on the discourses of black women’s beauty, Anarcha’s name is indexed – and Sims isn’t. What some might deem an oversight from a historian’s perspective might be an act of assertion, a counter-history, a remembering differently. Performer and health educator Terri Kapsalis, who provides one of the most indepth and critical account of Sims’s work in her cultural study of the speculum, also dreams of difference for Anarcha and the others: she asks about their husbands, partners, children, loved ones, and about the space outside the hospital (1997, 40). This desire, to remember differently, also fuels the narrative I want to unfold: but the movement of my narrative becomes constrained and arrested every time I begin it, since the medical narrative surrounding Anarcha is so strong, the doctor’s agency so well documented and remembered, and her agency only dreamed about. Stop, start, side-track: these are the performative politics of my academic writing in this essay, refusing a linear logic, and yet needing to be clear, and to speak out, respectfully, in difference.

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Anarcha and disability culture history FITSARI ’DAN DUNIYA (Urine, the Oppressor of the World) Fitsari ’dan duniya fitsari ’dan Dandi. Urine, the Oppressor of the World. Urine, who has forced me from my home. Muna neman lafiya; sun ce mu tafi Dandi. We went out looking to be healed, but they said we were all whores. Ciwo ya same ni tun ina yarinya ta. This sickness ‘caught me,’ when I was only a young girl. Ina zauna a gida na ji labari mai kyau. I sat confined at home until I heard the good news. Nace:Wayyo, iya! Sai kiba ni ku’di. I said, ‘My word, mother! Give me the money’ Zan je Jos Jankwano zan sauka zan ga sabbin Turawa. I will go to Jankwano in Jos! I will go down there and see the new Europeans! … (from Wall, 2002: 1330) This dance song is sung by women thrown out by men, now living in Evangel Hospital in the city of Jos, in Plateau State, Nigeria. It tells a story of singing together, dancing together, call and response. These women find their own voice (recorded by a St. Louis-based surgeon, the founder of the Worldwide Fund for Mothers Injured in Childbirth). They find their voice even within a force field that speaks of both gendered and colonial histories, personal and structural oppression. It leads me to think about Anarcha, Lucy, and Betsey as part of a culture, a community, and a group of people who will have found ways of surviving. Forced operations claimed as a necessity to make a body more ‘acceptable’ to its social field, social exclusion as an effect of bodily and functional difference, a parading of their bodies to other practitioners, their bodies as fields of experimentation, and an ambivalent attitude towards medical power: these thematic complexes all link these women to the stories of many disabled people, and their experiences in the medical theatre of bodily display, the surgical theatre, and the performances of disability. To bring Anarcha into the purview of disability culture has multiple implications. Firstly, calling her presence into the realm of disability culture history does not mean just adding another ‘identity’ label to her persona. As disability studies scholars have shown,4 disability is more than just another identity category (although it is that, too): it

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undergirds many binary distinctions of gender and racialized difference. These issues of the intertwining of race, gender, and disability are very visible in the case of Anarcha and the women that surround her. One disability story in relation to fistula concerns the gender framework within the West African community structure. Fistulas, and the smell of urine, can engender ostracization within many African societies, as the stories surrounding the Abbis Ababa fistula hospital show.5 Anarcha and the other women would have been deemed ‘crippled’ by their condition not just by the white slave masters who saw their condition as making them unfit for their duties within the sexual economy of slavery (and therefore provided them freely to Sims’s hospital), but also by their black community. Another disability reading of Anarcha’s story can focus on ‘dysaesthesia aethiopis’ – a historical medical label that gave sanctioned weight to the presumed lack of pain perception attributed to black people. Disability in relation to pain becomes a class marker in nineteenthcentury society: ‘refined’ sensibility (evidenced by strong susceptibility to pain in the form of disease complexes such as neuralgia) was seen as evidence of a higher developmental position apropos the hardy and strong non-white woman.6 It is around this issue of pain that themes of slavery and its justification, issues of degeneracy and the decline of the West, and other racist and eugenic stories can coalesce. A disability history sensibility can also allow me to see the problems surrounding historical embodiment. The archives of medicine give me little help in accessing the being-in-the-world experienced by someone other than myself. The aesthetic, non-clinical encounters in art practice have better chances to move me, to expand my repertoire of emotions and motions, as I witness (once) living bodies, voices, and visions appear in proximity to me, in the registers of the everyday.7 The distance the archive enacts, the ‘objective’ abstraction necessary to the generation of data, keeps me away. As a disability scholar, I grow sensitive to the level of interpretation and claim that surrounds historical embodiment, and the politics involved with someone pronouncing on a person’s ‘quality of life.’ And these pronunciations do not always translate from bodies to language to sense. * * * Pain and fistulas: it is surprisingly hard, even after many days in the archives of medical libraries, to assess their relationship. Of course,

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‘pain’ always had a problematic relationship to the medical archive: presumed ‘subjective,’ and dense to the penetrating gaze, its qualities and specificities are hard to measure. So, to use the language of (some) contemporary physicians taking a patient’s history: on a scale of 1 to 10, with 10 being the worst you ever felt, how did it feel, Anarcha? How would the question be answered by a woman who developed a fistula after cancer-treatments today (the main source of occurrence in the US today)? It is easy to see the disconnect between the modes in which pain can enter the archive (and a patient’s chart), and the experience of pain itself. After speaking with various medical practitioners and cancer survivors, I still feel unable to imagine for sure what having a fistula might feel like. One woman who spoke to me refused further operations on her fistula, and assured me that she lived a good life. Diane Axelsen, a philosophy professor from Spelman College, plays it down, when she states that ‘While certainly a source of chronic discomfort and possible secondary irritation, and while obviously embarrassing in many contexts, vesico-vaginal fistula is not a disorder involving chronic or severe pain’ (1985: 12). It is clear that Sims himself goes to extremes to present the effects of the condition: the urine was running day and night, saturating the bedding and clothing, and producing an inflammation of the external parts wherever it came into contact with the person, almost similar to confluent smallpox, with constant pain and burning. The odor from this saturation permeated everything …; and, of course, her life was one of suffering and disgust. (1884: 240) McGregor writes about this description: ‘Here also, in his article, the patient’s condition is compared to smallpox – a terrible and deadly disease. In reality, while she was doubtless miserable and very uncomfortable, she was not dying’ (1998: 46). I note Sims’s equation of the fistula itself with poor mechanisms for maintenance, made particularly hard in the sweltering heat of Alabama. Regular access to water, clean clothing, pads, and other devices would have helped to make the condition more bearable – and it is slavery, rather than the condition itself that put these remedies beyond the pale. Noting these issues shouldn’t cloud the very real suffering no doubt experienced by the Montgomery women: even if physical pain wasn’t

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as ‘bad’ as Sims describes it (and constant itching or conditions such as cystitis are horrible to bear, questioning Axelsen’s assessment), the social exclusion and internalized disgust heightens these painful experiences, making ‘external’ and ‘internal’ pain indistinguishable. Most importantly, though, it is in Sims’s interest to portray fistulas as a major curse and fate (nearly) as bad as death itself: it is only against this rhetoric that his surgical interventions are vaguely arguable. The very tone of the rhetoric cues me to imagine the resistance and repugnance at the experiments by Sims’s contemporaries. Again, the archive does not give me many glimpses of these local, temporary reactions, or to the everyday reception of the slave clinic in its town. The accounts of ordinary people walking on the street past the house are lost to me. But I can know from Sims’s biography that local doctors stopped attending his public operations, and I can also learn from the same source that some of his wife’s relatives urged him to stop his extended experimental work. Since it is only Sims’s voice that echoes down to me, it is hard to know, but easy to imagine, differences: not everybody can keep up dogmatic certainties about black women’s pain in the face of screams and tears (and we know that in the case of at least one of the women, Lucy, Sims admitted that she had excruciating pain and ‘extreme agony,’ 1884: 238). Some evidence shows something of the disquiet and even horror that surrounded the hospital. Seale Harris, writing in a biography in 1950 – the biography was dedicated to Harris’s father who had been a disciple of Sims – about the Sims hospital claims that ‘all kinds of whispers were beginning to circulate around town … dark rumors that it was a terrible thing for Sims to be allowed to keep on using human beings as experimental animals for his unproved theories’ (327). The triumphalist epitaph on Sims’s monument in the statehouse grounds in Columbia, South Carolina reads that he was ‘honored in all lands and died with the benediction of mankind.’ Harris’s account shows that there was a public secret surrounding Sims’s public ascent – his triumph might have been tainted right from the outset, not only in contemporary hindsight. Arrested, enslaved, Anarcha was held in place by other means than the marble of monuments.8 Medical historian McGregor makes a good case for the reason why the slave women remained with Sims through the years: she doesn’t even mention the problems and difficulties of escape, but she discusses how Sims administered opium to his subjects, in doses extremely likely to make them dependent on the drug (1998: 51–2). The opium was not primarily given as a pain reliever, but as a way of making these women constipated in order to heighten the

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chances of a cure: Sims wanted them to pass as little as possible after their operations, so water and food was kept at a minimum, as well. Their opium consumption allowed for a docile hospital atmosphere, even though other side-effects beyond dependency are easy to imagine. In interviews, medical practitioners tell me that this regime is vital for a fistula cure to be achieved: indeed, in fistulas that involve the anal canal (and leakage of fecal matter), passing nothing is highly important. But what might be ‘sound medical practice’ becomes something else when repeated 30 times. Weak, potentially dehydrated women who endure multiple operations, and who move very little: thrombosis and other post-operative dangers such as sepsis would have been very real for them. It is likely (given the reality of sepsis, and the way that Sims speaks about one of the named slave women in his care ‘nearly dying’ of a post-operative infection), although undocumented, that many of the hospital’s inhabitants died. What went on in these women, removed from their circle, put into a new institution outside the plantation, and kept there for years on end? Throughout my review of the literature, I have found it difficult reading: maintaining a distance, keeping at bay my thoughts of excruciating pain, hard environmental conditions, and drug dependency of these women, and yet giving them space to not be wholly consumed by my fantasies of their victimhood. As a disabled woman, I have shared a small part of a path that they might have been on, at least in medical terms. After a knee operation and the required immobilization in a hospital, I suffered a painful deepvein thrombosis in my youth, and stayed on strong opiate drugs for many weeks as I was shuttled about from intensive care unit to ward and back again. I am well familiar with the narcotizing effects not only of the drugs, but also of the flow of time within the institution of the hospital, the emptying and filling of time, and the hypnotic value of repetition, be they electronic sounds of medical machinery or the drone of passing cars far outside my hospital room. What would three years on similar drugs, more or less horizontal, with nothing to do, do to you? And yet, I need to acknowledge that the women’s actual experience is closed to me. Not only would the environmental conditions be drastically different, and the women in the hospital un-anaesthetized if drugged during operations, they also probably retained many more memories of long-term physical violence and pain than contemporary women of any color in the United States hopefully ever experience (outside domestic violence contexts, some of the exploitative conditions undocumented people find themselves in, and the agonies that can accompany living without health insurance). On plantations, lashings, even of pregnant

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slaves, happened regularly (as many slave narratives show), and the labor that slaves were usually subjected to was too excruciating for many contemporary people to imagine. These women’s understanding of pain and mine would have been widely divergent. In addition, sadistic masters and doctors interested in dabbling in ‘experimental science’ on cheap slave labor were numerous. One escaped slave named Fed, who fled to England, wrote later about his time in the US South, and about being an experimental subject for a doctor who wanted to know about ways of withstanding high temperatures (a generalized query very similar to the ones Dr Mengele and the other doctors in front of the Nuremberg Commission in 1946 had asked in the concentration camps). This doctor, a Dr Thomas Hamilton, buried Fed to the neck in a heated hole in the ground, effectively cooking him. The doctor administered various drugs to see what their effect would be. Fed fainted each time in his ovenlike pit.9 Having gained mobility to run away, Fed also gained the mobility of the pen, forbidden him by slavery law, and was able to write of his experiences, breaking the silence that still encloses Anarcha. How to write about these experiences? There is a specific function to affect and the draw of sentiment in the style I have chosen in these pages. Some writers choose what to me, today, sounds like a sarcastic voice, hiding/not hiding pain and anger. In commenting on similar slave-experiments, Kenneth and Virgina Kiple write in 1980: ‘Some experimentally inclined physicians wreaked considerable wear and tear on slave patients in an effort to find out [about the anatomy of blacks and their disease susceptibilities] (215). But what does this tone (‘wear and tear’ – a formula to hold pain at bay?) do to the memory of Anarcha and the others? My outrage at Fed’s fate can only be owned by me: I can neither claim to know this man, these women and their experience, nor can I speak ‘for them,’ exposing a system already often exposed. But what I can witness is the fact of my own outrage, and my ongoing astonishment at the lack of references to deliberate and systemic cruelties as a significant part of the history of the country in which I live.

The stun The history of postcolonial black feminism already knows many named and unnamed heroine-martyrs, women who suffered and died under the brutal hands of racism. Remembering them can often be an exercise in thinking about one’s own self. Black feminist activist

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E. Francis White writes about the work surrounding Saartje Baartman, the Hottentot Venus. Baartman was a South African woman who was brought to Europe and displayed in freak shows in various locations in the nineteenth century. White writes about black feminist responses to Baartman’s story: ‘We use hyperbole and understatement to distance ourselves from the pain we experience when we think about the story. And our ironic and sarcastic tones barely mask the anger we feel toward the scientists and carnival hucksters who exploited Baartman. (2001: 18). But the anger at long-dead exploiters is not all that swings in the memory. White uses the example of strip-searching, frisking, and the relative likelihood of this happening to a black woman rather than a white one: ‘This history resonates for us, because we remain under a regime in which our bodies are open to racist controls. Baartman’s case causes especial anxiety, because her experiences represent the physical vulnerabilities that we still face’ (2001, 20). Remembering Baartman is to recall aspects of one’s own position, obliquely, and to see it as a structural historical problem, not just a ‘momentary glitch’ in contemporary race relations. White’s analysis of the contemporary echoes of the Venus story is powerful, active, and her link of contemporary indignities to historical cruelties does not elide the specific history of Saartje Baartman, but makes her story come to life in a framed and specific way: while anger stands pretty helpless against freak displays in the eighteenth and nineteenth centuries, racism and sexism today are well within the purview of action, and channeled anger is an appropriate reaction that can lead to change. Here, the response to the archive can help create a shared repertoire of political action. It is vital, then, to find ways to move with the anger. But what is the expression of this angry move, and what happens to the adrenal charge of encounter before political actions? Janelle Hobson writes about a moment of felt silence when first faced with the realities of Baartman’s story. Baartman’s anatomized body became a rhetorical pawn in the debates about the supposed inferiority of ‘the black race’ in scientific racism and eugenics. Books, articles, treatises, and monographs have been filled with the details of this story.10 But in a graduate classroom at Emory University, Hobson found that to know the scholarly arguments about the unfolding and embedding of Baartman’s story is one thing. Vision (here as a simulation of the reality of a lived experience) created a different form of knowledge for her, a shared understanding:

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It was, however, the image of her [Baartman’s] disembodied and dissected genitalia – preserved in a jar filled with formaldehyde fluid and shown to us in a slide show – that stunned the class into silence. In the long and awkward pause that ensued, we (all women, primarily of color) had to acknowledge that there was no effective language to emote or even intellectualize the body politic, as it relates to Baartman’s legacy. (2005: 4) Stun, awkward pause, beyond language: there was something in the encounter with Baartman’s mutilated body, even translated through the glass screen of jars, liquids and photography that touched the women in that classroom. Of course, in terms of disciplinary framing, vision creates discourse: anatomical renditions of Baartman’s and other women’s genitalia, whether as drawings or photographic slides, act as information carriers and rhetorical tools in biomedicine (as disability studies knows well). But here, nearness rather than distance emerges. The stunning effect of this vision in the classroom scene seems to stem from ‘we (all women, primarily of color).’ The visual becomes assaultive, leads to modes of identification, substitution, as those women become aware of themselves as women, and as women of color. The visual becomes an affront, as they sit together, learn together, and learn of a history that would have excluded all of them, denied them learning, as women, and as women of color. Identification, both as a scientific exercise and as a social phenomenon, enters the scene. A third identification might also play into this stun. When I speak to other women about Anarcha, Betsey, and Lucy, many react in similar ways, with a physical shudder visibly passing through their bodies. Hearing of fistula and their ‘cure,’ many women involuntarily clasp their legs, and, when I ask them about the specifics of their reaction, they describe a pulling of the perineal muscles: an interior, invisible, but clearly experienced reaction, an embodied connection to stories hard to hear. But this stun, this arrest, the perineal heave, never normally finds its way into the archival, the written-down traces of history. This is a ‘private’ outrage, expressed in the registers of the repertoire of bodily action. It asserts itself in the shame of History: the Latin word for shame is the root of the word pudenda, the female genitalia, the ‘private parts.’ The stun of the privates, made public, opens for me avenues for remembering Anarcha differently.

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The contemporaneous archive: Sims speaks There’s something about the stun, and about my (and others’) involuntary internal shudder that also frames Sims’s work, throws it into immobility. Sims is well known in medical history for two medical innovations. First is his speculum, allowing him visual access to the vagina, and the Sims position, an immobilizing, highly uncomfortable position that allows the gynecologist access to the woman’s genitalia, and allows for the insertion of the speculum. Different from other positions for gynecological exams (such as stirrups) that allow a woman to face her doctor, the Sims position turns the woman away – a necessity in the Victorian era, where Sims’s visual exploration of a woman’s genitalia was one of the most radical aspects of his practice.11 Of course, there are many medical and social reasons why gynecologists employ different body positions in examinations. But in Sims’s case, women’s immobility emerges from his practice in many different ways. Beyond his work on fistulas, which I will discuss in more detail below, one of his other medical achievements is his identification and naming of ‘vaginismus,’ the rigid clench of the vaginal muscles, disallowing access. In his Notes on Vaginismus, given as a triumphant lecture at the Obstetrical Society of London, Sims discusses a case brought before him, a woman whose genitalia wouldn’t allow her husband access to his ‘marital rights.’ Sims found that he couldn’t even insert a finger into the tightly clenched vagina. He writes what happened when he speculated about operative treatments: They seized the idea and insisted on the operation, which I declined to perform, on the grounds that an untried process was not justifiable on one in her position in society, … (1861: 358–9) The cut – but where to cut, how to cut, how to throw the clenched muscle into immobility: only experiments could provide that answer, and to experiment on this woman wasn’t possible, given ‘her position in society.’ Eventually, Sims does agree to operate on a different woman, one whose husband is threatening her with divorce (and it is this threat to the family that allows Sims to overcome his scruples). After three operations, still not successful, one woman’s voice is heard in Sims’s account, not normally given to describing patients’ reactions or emotions.

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The woman whose vagina has already been cut and cut again three times remains silent, but her mother enters the scene: By this time the mother of the lady came to the very just conclusion that I was experimenting on her daughter. I told her that was true, and attempted to explain to her the propriety of the course, when a lawsuit and divorce were in the distance. The mother, however, was inexorable, and unfortunately removed her daughter from my care. But her improvement was so great that I had no doubt of her fulfilling the relation of wife under some difficulties. The experience gained by this case was of great value to me. (1861: 360) Eventually, Sims will find ‘a cure’: cuts that to a contemporary reader read like genital mutilation: he removes the hymen, makes a large Y-shaped incision into the vaginal muscles, employs ‘subsequent dilation’ (often with a glass dildo, worn for several days).12 These are accounts from Sims’s practice in New York, where he worked at the first women’s hospital he co-founded, and, in particular, from his private practice, much more lucrative, and with better-placed clients. The rationality of cuts, and their multiplicity, is obvious to Sims, even as the different rationality of tightly clasped vaginal muscles in the face of such medicine and gender relations might be equally obvious to contemporary readers. But I want to draw attention to another aspect of these cases: the issue of experimentation, justifications for it, and the fact that in ‘the public’s eyes’ (here only accessible through the irate mother), experimentation was already problematic. A few years before operating on well-to-do white women in New York, Sims earned his spurs differently, learning his craft and the cut on different bodies in another kind of rigidity: the grasp of slavery. He learned what he knew through multiple unsuccessful and life-threatening operations on Anarcha, Lucy, Betsey, and others. * * * And again, I pause, shift sideways, even as I know that I need to present his writings, as ‘the archival record.’ Denunciatory texts from the 1970s onwards create counter-voices to the medical texts. The historian Graham J. Barker-Benfield talks about early gynecology being characterized by ‘flamboyant, drastic, risky, and instant use of the

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knife’ (1976: 90), and Barbara Ehrenreich and Deidre English speak about Sims ‘keeping slaves for the sole purpose of surgical experimentation’ (1979: 76). For instance, Mary Daly’s important radical feminist polemic drew attention to Sims in her book Gyn/Ecology (1978), which traces cross-cultural structures of patriarchy designed to degrade and dismember women. In her poetic/political language, she describes Sims, and gynecologists like him, who hastened the demise of midwifery, cut very quickly, and began to identify women with their sex organs. She references the students at Harvard Medical School who adulated Sims as ‘one of the immortals’ when she writes: Such gynecological ‘holy ghosts’ as Sims now haunt the history of women from generation to generation. The seeds of such ghostly/ ghastly presences are iatrogenic diseases, and the daughters of women infected by such ‘divine’ doctors carry in their bodies and minds the cancerous cells hidden there by these ‘helpers.’ (Daly, 1978: 226) These ‘cancerous cells’ are the ‘second-rate,’ pathologically identified, positions of women as cutting surfaces in contemporary culture. Black history scholars entered the field of discussions surrounding Sims later,13 and although I have not found a specific critique of white women’s writings about black victims in relation to Sims specifically, the wider framework of a postcolonial feminist understanding pertains very much to these accounts. Daly’s polemics have not only drawn fire from the patriarchal system she assaults, but also from other feminists, in particular women of color who point out that non-white women are cast as victims in need to be ‘spoken for’ by white feminists. This charge, speaking for silenced others, still needs to shape respectful discourse in a postcolonial feminist environment. My account of the women in Sims’s hospital tries to navigate carefully. * * * The scene is set, and here is Anarcha’s first entry into Sims’s autobiography. He is a young inexperienced physician in Montgomery, Alabama, and services various slaveholders like himself, making rounds. We found a young colored woman, about seventeen years of age, well-developed, who had been in labor then seventy-two hours. The child’s head was so impacted in the pelvis that the labor-pains had

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almost entirely ceased. It was evident that matters could not long remain in this condition without the system becoming exhausted, and without the pressure producing a sloughing of the soft parts of the mother. (1884: 227) We read here the voice of the slaveholder, a man raised and living as a white doctor in the second half of the nineteenth century. The objectification of Anarcha’s body he performs in these sentences is generic: the man speaking about a woman’s labor, the white man speaking about cattle. And still, we need to acknowledge what is written in those printed pages: women left in labor for three days, women’s bodies shaped by the effects of their environment. The wide-spread lactoseintolerance of a large number of people of African descent in the South could lead to rickets, which in turn could lead to narrow hips, and to the tortures of childbirth so often described in the literature. Here, in this recorded ‘fact,’ the medical archive allows for reflections on daily bodily being, on the repertoire – that which is transmitted in different, embodied ways. From various medical historical texts, I gleaned that rickets as a physiological issue was exacerbated by slavery practices. These practices, on the one hand, heightened difference hysterically by trying to find racialized markers that could distinguish between and hierarchize ‘races.’ On the other hand, in relation to rickets, these daily slavery practices that looked away from the actual nature and cause of (environmental) differences – equating problematic bone development with lower developmental status, not with a problematic fit with nutritional practices specific to world regions. This racist vision intersects with other practices that effect childbirth. Slave children were owned by their mother’s slaveholder, and the breeding of a labor-force was a significant economical aspect of slavery. To many postcolonial writers, the birthing of children into slavery becomes a traumatic memory. An arrested birth reads in multiple ways against this scandal of living arrest and forced labor. Likewise, sexual exploitation and rape were widespread. And thus, many black women gave birth when too young, undernourished, and exhausted.14 Of course, there is no way of knowing if any of these issues affected Anarcha specifically, neither can I make use of her body and her pain to project onto her (sub)conscious desires about her child’s entry into the world. This is where her figure becomes hazy, straining on a bed (or the floor), maybe alone since the others were out working, maybe with

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a black midwife who would be completely invisible to Sims. Anarcha’s figure loses her specificity and merges with others we have read or heard about. Sims’s account of her, which gives no space for her voice, robs her of her agency in multiple ways: she is a slave, she is silent here, and she becomes a figure, a statistic intersected with multiple exploited bodies. Sims continues, and tells us of being called back to Anarcha, diagnosing her fistula. In the years to come, Sims would establish a hospital in which he collected slave women with fistulas, and operated on them, experimenting with many different devices and sutures. These operations all took place without anesthesia, and most were completely unsuccessful, resulting in inflammation, sepsis, and other problems. In his autobiography, Sims only charts his progress, not that of the women in his care, but we know that Anarcha alone had to endure over 30 of these operations. I want to end this section on the stun – not to ‘gross out’ the reader, but to remind you of the repertoire of performances in Sims’s clinic, and of ways of (not)knowing. Can you imagine her? There she would be, immobile, on a table, either on her arms and legs, or in the uncomfortable Sims position, conscious, held by either white doctors or by other inmates of the hospital. As little as Sims tells us, I read that she fought: he speaks of ‘voluntary resistance of the patient’ (1884: 68) (rather than the involuntary one of the spasm away from the blade).15 There she would be, while Sims cut away the necrotized tissue, the remnants of the last unsuccessful operation, in her vagina, and threaded a needle to her flesh. But yet, she survived. She was more than the flesh at the moment of the cut. She lived, and traces of her habitation in the slave hospital remain beyond the medical names, instruments, and archives. They remain in the shared embodiment of women who feel a pull, a stun, a pause. They remain in the work of activists who fight for just and free health care to all people living in the United States. They also remain in the aesthetic means disabled people have found to celebrate their survival in the face of structural oppression. And in art practice, both invited into the archive and interloping, some of the objections uttered by survivors can find places to live. But before I discuss these witnesses on the limits of the archive, I want to turn briefly to the presence of Anarcha in more contemporary accounts of her story within the medical archive. It is this contemporary, ‘reasonable’ register that political artwork needs to address.

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The contemporary archive: speaking about Sims Most references to Sims in medical journals in the twenty-first century focus on his work as ‘part of his time’ – a rationalization that somehow makes it acceptable to ‘look beyond’ slavery as the origin of his success. These biographical accounts function within the logic of a Western, individualized archive of progress: the issue of ‘being of his time/ beyond his time’ echoes the teleological narrative of a medicine (and world) that moves towards fuller enlightenment, and where individuals, contributing to the forward-looking narrative, also construct the forward momentum themselves – they are embedded and constructed by ‘their time’ as they constitute the future. Some accounts problematize the ‘of his time/beyond his time’ narrative of Sims, but ultimately fall back into the narratives of great (if flawed) men. In a review essay on Sims in the Southern Medical Journal in 2004, Jeffrey S. Sartin discussed how Sims’s practices fall short of contemporary medical ethics. Sartin explains that the grounds on which they fall short are the areas of autonomy and beneficence – rather technical discussions, stemming from bioethics. Beneficence refers to the doctor’s will to make patients better (rather than merely to further his or her own career through heedless experimentation). Autonomy refers to the patient’s ability to give informed and free consent, hugely problematic in a slavery context. By couching his criticism of Sims in these terms, Sartin does not deal with the unspeakable nature of the experiments in the farm hospital: he circumnavigates the stun, the clenching muscles, the coming up short. Sartin concludes his essay in the following way: One cannot escape the implications that if it were not for Anarcha, Betsey, Lucy, and the other unknown slave women undergoing dozens of operations without anesthesia while under bondage to Sims, he would have ended up an anonymous practitioner in Alabama. This dependence of the southern professional on chattel slavery was exemplified by J. Marion Sims no less than the masters of cotton plantations. The stain of the most shameful portion of America’s heritage cannot be whitewashed when we consider his place in history, even as we recognize his many accomplishments. J. Marion Sims was simultaneously a man of his time and a man ahead of his time. While it might be concluded that his place in history results from the latter, and any ethical questions arise from

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the former, the truth is complicated. Though modern critics may not wish to remove Sims’ monument from their current homes, they would not be remiss to have monuments erected beside them to Lucy, Betsey and Anarcha. (2004: 504) There is clearly a carefulness here, maybe a knowledge that speaking decisively might cause problems (after over 100 years?). Parsing out, putting here, putting there, dividing, the enormity, unacknowledged, becomes … manageable? Erecting a monument to Anarcha, Lucy, and Betsey: is that the answer to the historical banality of atrocity, its everydayness, and its ubiquity? Or is this a carefulness that edges towards whitewashing these women, white-facing them, denying their literally unspoken suffering and making them the free, informed, autonomous subjects of their own destiny, climbing up onto plinths in the same way Sims managed his career? Arrested, again, immobilized in marble: how can that marble hold the tension that must have permeated their bodies against the cutting knife? Sartin’s (relative) difficulty in even presenting this careful account might well relate to the editorial of the same issue of the Southern Medical Journal, in the fifth year of the twenty-first century. In the editorial, J. Patrick O’Leary writes the article, ‘J. Marion Sims: A Defense of the Father of Gynecology.’ One of the issues on which O’Leary and Sartin disagree is anesthesia: Sims didn’t use it at the slave farm, but he did use it later, once he became famous, went on lecture tours, and operated on royalty in Europe, and in the first Women’s hospital he co-founded in New York City. The point debated back and forth is whether anesthesia was widely available and used at the time of the operations. The historical record is indeed ambiguous: anesthesia was used (on white patients) well before Sims’s operations but it isn’t clear if Sims as a lowly practitioner in Alabama would have heard of this. Quite a number of commentators make this debate (‘could he have known’) the centerpiece of their discussion. And I can see the lure: following this question can lead to a merry romp in the medical archive, safe and secure knowledge with gratifyingly hard-but-not-impossible-to-trace publication dates and dissemination routes. The debate becomes moot, though, through Sims’s own admission. Sims believed in the lesser pain receptivity of black people, and acknowledged in his later lectures and publications that he couldn’t have operated on white women without anesthesia. He didn’t feel the same impossibility in relation to his slaves – his knowledge of their

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lesser pain receptivity (and their easily silenced voices?) allowed him to operate (and restrain). Sims would not have started his program of multiple, endless surgery on vaginas if the women available for this operation had been white rather than black. The terms of this particular debate are taken up by many voices, writing in medical journals in different countries. But their measured tones and parsing, combined with the historical excavation of ‘he might have known/couldn’t have known’ keeps eliding the presence of Anarcha and the others, who usually appear at the end, as a form of coda. Shouldn’t the women also leave traces in the everyday of life, not just on the plinth of specialized attention? As I do it myself, I still find the recitation of names, linked to an exhortation to remember, problematic. Putting them on a plinth next to Sims cannot be the answer. For Wendy Brinker, writing in 2000 as an activist and artist in Columbia, South Carolina, a possible answer lies in the direction of the dismantling of monuments: Since it was illegal for enslaved Africans to read or write, an offense punishable by death, Anarcha, Betsy and Lucy left no account of their ordeal. We can only imagine what they endured at the hands of Sims and what horror an enslaved woman must have felt at the news that she was being sent to him for treatment. Surely rumors must have run rampant among enslaved communities about what he did to women there. All over South Carolina, Sims has been honored and memorialized with statues and plaques. Buildings, hospitals, schools and streets bare his name. While it is impossible to negate the historical context of his racial, class and gender biases, shouldn’t we agree to apply some standard of humanity to those we choose to honor? (2000, webpublication) Finding traces of Anarcha, if not in the archive, then in the bodily repertoire: this is the path this essay steers towards, tentatively, as I cannot claim full authority, as I open my writerly voice to be intersected. To me, the repertoire emerges in the visceral responses to these histories, to the calm, decorous voices from the archive. How else can we find a link to these women, how can their stories become central, without in turn just falling back into the categories of representation and (merely) the memory of oppression? I offered disability culture as a space to hold onto their memory, a space that might allow for their whole being, life and survival to be remembered, not as special heroines, but as private

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women who have lived. To see them thus, to be touched by them as such, imagines a space that does not only see them as medical victims.

Epilogue: the visibility of ghosts Visual documents can make present a past in different ways than the writings in the archive – as Hobson found in her class, stunned into silence. In the contemporaneous and the more contemporary medical archives, I found two visual memories of Anarcha, Lucy ,and Betsey, of plantation slavery, and of brutalized women’s bodies – one directly presenting them, one haunting a portrait of Sims. The site of the wound in the cases of Anarcha and the others is unrepresentable: the very idea of seeing its site was anathema to many practitioners before Sims, and his speculum offered a first (to US medical knowledge) sight of the forbidden realm of the woman’s interior. And this wounding, and its tense relation to the stances of propriety and decorum, guide my reading of the image I have found in the archives, an image that aims to present what happened in Montgomery. It does not come from women’s or black people’s reclamations of history, but from Robert Thum, a white Michigan artist who was commissioned by the Parke-Davis Company to create this image for A History of Medicine in Pictures (ed. George A. Bender GA, 1961).16 Thum had a reputation as a detail-oriented historical painter, and he created many images celebrating medical and pharmaceutical contexts, as part of an advertising campaign. This practice echoes the ‘soft marketing’ many drug companies still use today when they commission art contests or calendars. The Parke-Davis Company was a pharmaceutical company situated in Detroit, Michigan, and was acquired by Warner-Lambert in 1970. Since 2000, Warner-Lambert is part of Pfizer, a massive medical research and drug company. Thum had worked with Parke-Davis since 1949, and had created 40 images, first for a book on pharmacy, and then another 40 for this history of medicine volume. As part of his research, Thum visited many sites of historical importance. I have not been able to ascertain if Thum visited Montgomery, Alabama, but it seems unlikely. The makeshift hospital Sims operated in was not a site deemed worth preserving by subsequent generations (and even this well-worn formula for historical movement rings hollow in the context of women who might never have seen their offspring, their next generation, again). In Thum’s painting, the wounding, the bleeding, the urine, and the puss are invisibilized.

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The image shows three black women and three white men in a tense and dramatic situation that is pretty much unreadable without the additional historical information of what went on in that hospital in Montgomery. All gazes in the image point to one man at the right of the image: a man standing with his arms crossed, looking straight ahead. This man is clearly Sims: he holds in his hand an early version of the speculum (originally fashioned from a bent pewter spoon). The leonine hair is well recognizable to someone who has been combing through the archive: Sims had his likeness taken by various portraitists. He doesn’t make obvious eye-contact with the woman closest to him: she is kneeling on a table, a mild and yet resigned look on her face, one hand as if in supplication lying on her chest, one on her leg. McGregor, who reproduces this image on the cover of her book, draws attention to the beautification of the scene: the women’s unshod feet show no sign of the tear and wear they would have been exposed to without footwear, a white drape separates the area from all other hospital beds (1998: 43). Two women peek out, past the sheet: a look of awe and childlike curiosity can be read in their stances, referencing familiar stereotypes, and yet, their faces hold a blankness or an unclear expectation. The two other men are younger than Sims, in shirtsleeves. And I read some defiance, some doubt in their stances – an arm is out, a chair is lifted, a head is cocked. Are these stances of rapt attention? Or did Thom let some of the gruesomeness of the situation, accessible even to a white man in 1950s America, flow into this image by way of unsure affects, unclear emotions? My signifyin’ reading here wants to see resistance, doubt, a cocked eyebrow at least – a halt against what will predictably unfold. Scalpel, and scissors, are laid out already, and they point out to me, the viewer, and away from the tableaux of poses held by these six protagonists. Am I to make up my own mind? One other image from Sims’s archival presence spins or signifies into repertoire, into the specific encounter of history’s time and the present of the witness. Visiting the rare book room at the library of the University of Texas Medical Branch, I asked for a copy of Sims’s autobiography. I had just begun my research into this project, and had spent much painful time reading about the history of medical experimentation on human subjects. I also felt sad for not being able to find works that presented a different vision to Thum’s painting. With these emotions, I opened the book. I found a non-documented image, a stranger in the archive, for next to that by now well-familiar head and shoulder portrait of Sims, a new image had inserted itself.

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Maybe it was the humid atmosphere of Galveston, even present in the rare book area, or maybe it was just a function of the inks used in printing the 100-year old book, but there, on the overlay protecting the print, a ghost of an image had appeared. Ghosts have much currency in the literary remembering of slavery – Toni Morrison’s neoslavery writing enacts the bewitching of ghosts, bringing forth specters in order to allow their pain to be heard, and their memory laid to rest respectfully. Here, in the heart of the medical world, surrounded by dark wood and hard sculptures of men’s heads, I found a ghost, and a shiver ran down my spine. But this ghost is a shadow of the man whose voice comes from its pages, who speaks in the tone of clinical detachment. Something had detached itself from the ink, from the pressure of the printing press, and had woven a different density on the page that would otherwise be blank. Willfully, I think of Anarcha, Lucy, and Betsey, fully aware that I am evoking the register of the feminist gothic. Anarcha’s and Sims’s stories become shadows into which I pour meaning. It needs my labor to connect the material traces of time in the archive to Sims’s images’ bleeding, or to Anarcha’s public secret of slavery’s brutality. Violence is leaching through the material of the archive: how strange to find this weird image, literalizing my critical vocabulary, just as the danger of metaphorizing these women’s pain and subjugating their experiences to my story is constantly with me. The object has multiplied, and the story is no longer straight – and from being an objective observer, I needed to write this essay as a witness whose objection leads to forms of writing medical history that are open, multiple, and set off on different paths while keeping the stun of encountering history alive. The remnant in the library doubled Sims, for sure, but it also alienated him from his presence: there was something else, some overlay, some other vision of history that became tangible to me. Embodied in the archive, new performances of encounter occur in the library. I put down your 34-page document, excited and enraged, and called my mother. I was talking fast, unconcerned with what type of sense I was making. Anarcha’s story is not a linear narrative. It curves, winds around, and encircles all of us. The power in this covering, however, is that it can either smother us and take our breath away, or protect us and set us free. My mother, I think, could only hear the fistula and the violation and only smell the stink of shame. She had no words to form a question, to inquire what it all meant. She already knew. The burden of this knowledge is silence for many black women. I imagine her stomach muscles and the walls of

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her vagina automatically tensing as mine did at the suggestion of Anarcha’s pain. The unspeakable was already verbalized deep within both of our bodies from birth. This unspeakable shame, this mark of race and sex, informs the way we walk, hold our heads and hide or show ourselves to the world. Aimee Meredith Cox (Anarcha Anti-Archive)

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6.3 THE ANARCHA PROJECT PERFORMATIVE LECTURE (Starts in Black) (Sounds of metal clanging) (Slides start) TIYE: OOOOOOOOOO WOODEN CABINS GLASS DILDOS MOTHER’S BLOOD DAUGHTER’S TEARS PETRA: The object of this essay is two-fold – presenting a historical case ‘objectively,’ as a past event that wounded the bodies of women, and as an entry in the histories of disability culture. And at the same time, my object is to enact in my writing my objection: my attempt to find ways of distancing my story from the only way we have of knowing of it, the medical archive, the clinical distance of description. I am talking about this: A young white doctor in Montgomery, Alabama, in the 1840s developed operative procedures to close vaginal fistulas, that is, tears in vaginal tissue (caused by prolonged labor, or by inexpert use of forceps). Fistulas cause constant leakage of urine. The doctor developed his methods through extensive experiments executed on the bodies of a number of un-anesthetized black slave women. He operated on at least one of these women over 30 times. Listener, Reader, do you not come up short, arrested even, against these deliberately flat and unemotional sentences about ‘what happened’? The ‘objectivity’ of the medical, the scientific way of knowing, sets an object – something to look at, diagnose, categorize. But I ask you, as I write, to resist the distance of the objectification. This is the horizon on which this essay teeters – and teeters precariously. How can I talk about what it is that we should not forget? Already, ‘naming’ makes complex my task of writing: the three names and title of Dr James Marion Sims, together with the ‘father of gynecology’ label given to him, outweigh Anarcha, Lucy, and Betsey, the first names of the three women we know, with many others lost to history. These women were slaves, and the subject of multiple experimental operations. To merely repeat ‘what happened,’ what

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gynecological operations they went through in the rural town of Montgomery, Alabama in the 1840s, without anesthesia, and why, with medical labels and time-lines codified and sanctioned by the medical archive, is already to perform the victim narrative for Anarcha and her fellows. So already at this point, I have to think about the responsibilities of historical work. (Slides out) OOOOOOO TIYE: When I was 13, I had my first visit to the gynecologist. Days before the visit, I had been afraid of what would take place & asked my mother what the doctor would do to to me. She tried to comfort me by saying she would stay in the examining room while the doctor would just ‘look under my clothes.’ Mom, was usually frank & loquacious & debunked a lot of things for me that most parents tried to keep under wraps. But she was unusually brief with me now. My sole comfort was that she’d remain in the examining room with me. The gyn was a large white man (Slide of Sims Statue) with an accent that caused the ends of his words to curl. He had big clumsy hands and looked like a butcher in his white coat and I was immediately struck dumb. He came at me with something that I couldn’t see but that clinked and jangled. I slid up the table as his hands pressed my thighs and finally I felt something cold and hard press into me then seemed to break through. I yelled. He sucked his teeth loudly and threw the jangley object on the table behind him and began to press here and there heavily on my stomach. ‘Get her dressed!’ he said brusquely to my mother, snapping off his gloves, before he walked out the room. I began that staccato hiccupping kind of crying that used to drive my mother up the walls when I was little. I was beyond embarrassment, anguish and pain and there was some part of me looking down from the ceiling and feeling… nothing. My mother said not a word. She dressed me gently and when we got home she squeezed fresh orange juice and fed it to me with a spoon and I slept like I had died. (Anita and Aimee shadow screen dance)

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PETRA: All stories are disrupted by shadows: by the past and the futures entering our space, by our private times, sorrows and joys infiltrating generative and painful collaboration, by the touch of one hand and another. These are vibrations of history: the space opened in a moment, not the duration of a narrative, but the intensity of a song, a poem, a word, a touch: igniting passion. (Tiye sing) YOU BETTER NOT SHOUT YOU BETTER NOT CRY YOU BETTER NOT POUT I’M TELLIN’ YOU WHY CARRIE: I’m searching for Anarcha; a memory emerges. I am four years old convalescing from foot surgery at the Carrie Tingley Hospital for Crippled. I am a long way from home, and it’s nearly Christmas. I am lying in a large crib, one of many children lying in large cribs in a cavernous, white ward. In addition to the indignity of being in a CRIB (I’m a big girl, after all), I have a plastic baggie adhered to my labia to catch a urine sample. I try not to pee because I know that when I do, the nurse will come and peel the baggie off of me, which always felt like a thousand band-aids being ripped off at once. The other children are no comfort to me. In those days, such hospitals doubled as residential homes for crippled children abandoned by parents who were unable or unwilling to care for them. A girl in the crib across from me would taunt, ‘your mommy’s never coming back, your daddy’s never coming back, you live here.’ I knew she was wrong, but didn’t contradict her. I knew that her mommy and daddy were never coming back to get her, which was far worse punishment than any taunt I could throw back at her. The days were long and mostly empty. One day, a beautiful black woman visited the children’s ward. She sat by my crib, singing HE SEES YOU WHEN YOU’RE SLEEPING HE KNOWS WHEN YOU’RE AWAKE HE KNOWS IF YOU’VE BEEN BAD OR GOOD SO BE GOOD FOR GOODNESS SAKE

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She mesmerized me; her liquid brown eyes, her hair pressed into waves. Her warm ebony hand with a diamond ring cradled my tiny pink hand, both our hands resting on the starched white mattress. Her honeyed voice a soothing anesthesia. I wish I knew her name. BLOOD OF THE MOTHERS DAUGHTER’S TEARS BLOOD OF THE MOTHERS DAUGHTER’S TEARS BLOOD OF THE MOTHERS DAUGHTER’S TEARS BLOOD OF THE MOTHERS DAUGHTER’S TEARS Mother? Anarcha? Aimee? Petra? Lucy? Tiye? Anita? Betsy? I wish I knew her name. CHORUS (The Grid under Anita’s monologue) ANITA: I’m traveling the country searching for Anarcha. I thought that I found her in the eyes of the woman in the wheelchair at the last residency, but I must have been mistaken. That woman had red hair and she recited a beautiful poem about flowers with a charming smile. Anarcha was just a Black slave with no voice. A woman who had to show her buttocks to the white physician upon request – or when given the order. I thought that I almost found her when we went into that Alabama servant shack in Montgomery. But there, I looked around and realized that this was a white-washed version of what might have been her experience. None of the tourists in the village that day were Black and disempowered. There could have been a trace of Anarcha at Tuskegee, but there the campus was hot and vacant and populated by middle-class Blacks. They seemed oblivious to the past, reveling in the chance

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to pursue an education in the state of Alabama. They didn’t remember the incident that made Tuskegee infamous. How far back do I have to go to find Anarcha? At her birth she may have been only 30 years outside of Africa, but she was born here, in America. She arrived only to have her first child die on her at 15. Then she was able to suffer for another four years as a tortured body with senses so dulled that the horror of Sims’s knives penetrating her most sacred parts may have escaped her. Or did she believe that she deserved it. Where was her mother? Last month I found a section of Anarcha in Carrie’s poem about the indignity of the gynecology exam with its drips and blots of residue. I found another part of her in the sorrowful sounds of Tiye’s haunting song ‘to feel no pain.’ And there really must have been some of her in that woman’s eyes. But I continue to search for fissures in the present world that echo the voice of Anarcha. Because someone needs to account for the sins reaped upon her body. There! Did I hear it in your exhale? TIYE: TO FEEL NO PAIN TO FEEL NO SHAME LIKE A SHADOW I GLIDE OVER WALLS COOL AND SILENT I BEND INTO CORNERS AND UP TO THE CEILING FREE AND UNTETHERED LIGHT AND UNBOUND TO FEEL NO PAIN TO FEEL NO SHAME LIKE A SHADOW (Elevated shoes, images of instruments, slave shack)

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TIYE: It is important to me that we don’t over-romanticize the Anarcha story by glossing over the harsh and nasty The ‘under the clothes’ parts. The Power and The Control. Rough hands on vulnerable flesh. (Inhale) Cold metallic objects digging into soft intimate places. Eyes not wanting or caring to see another human-being… but only flesh to be toyed with. It ain’t pretty and it makes me sick and angry as a woman in general and as a black woman in particular. I am searching for Anarcha’s place to vent. We’re all afraid of anger and too many times the victims are expected to handle all things with grace. I think grace is a wonderful and sublime thing and I’ve tried hard and, I believe, succeeded in cultivating it within myself. But where does the anger go? (Breath rhythm with company) Petra, Anita, Carrie, Tiye, and Aimee, if we decide to follow these three Alabama women to that place. (Breath rhythm stops) And then maybe, if we can emerge intact, they might follow us into the garden. To a place of respite and release. A place we’ve created for ourselves. This is why I search for Betsey, Lucy, and Anarcha. PETRA: BETSY, LUCY, AND ANARCHA (Tiye hand claps interrupts) CHORUS: EH EH EH ATA BATEY OH ATA BATEY OH EH EH EH ATA BATEY OH ATA BATEY OH AIMEE: I am in New York. Harlem. I have come here for the most unlikely reason: to film my sister’s transformation from sad case to swan for a makeover TV show. When I walk into her apartment and see her, I want to cry. She looks sad, beaten down, gray, almost invisible. Every time I visit it seems another part of this once luminous black woman is eaten away – disappeared. As her fingers type furiously on one of the four blackberries the PR company she works for has given her so as to have constant access

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to her, I see Anarcha behind her frantic eyes. Like Anarcha, she is never left alone, never able to fully reclaim herself. The speculum, the blackberry, Sims entering the room where Anarcha just wants to find some rest, a supervisor calling on a Sunday demanding Jennifer’s body at work, Anarcha’s fistulas, the 16 fibroid tumors fed by stress and denial that sat for years in my sister’s stomach. The hosts of the reality makeover show tell my sister that she lives her life all in her head, that she has become disconnected from her body. No shit? We call that survival – a black woman trying to survive within the sickness of institutions. The corporation, the university, the doctor’s office, the street. Here, in all of these spaces, we lose our bodies to save ourselves. Anarcha, however, does not (even if we don’t fully realize it) allow us to remain completely lost or forever disconnected. I am gripping my mother’s hand and holding my breath waiting for my sister to debut her transformation. She walks through the door to cheers and clapping from the small crowd of friends and family behind me. I can only gasp and sob, gasp and sob, gasp and sob with my fingertips pressed hard to my eyelids squeezing out streams of tears. She walked in the room and I saw, for the first time since we were little girls, her eyes. Her big, clear brown, joyful, intelligent eyes and… she was smiling. Radiant. Her shoulders fell back and she stepped on strong legs trampling over those who would see her disappear – spitting in the face of invisibility – holding, reclaiming, owning, and celebrating her black female body. Demanding we not forget the fistula, the shudder, the cries, the pain, the horror, and the shame. But also demanding that we remember the strength and the love, the strength and the love, the strength and the love, Anarcha and Betsy, Betsy and Lucy, Lucy and Anarcha, Jennifer and Aimee, the strength and the love, the strength and the love. (Claps, Tiye starts then we add in) (Calypso) TIYE: (ALL) TO FEEL NO PAIN TO FEEL NO SHAME LIKE A SHADOW (Chorus vocals comes in) I GLIDE OVER WALLS COOL AND SILENT

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I BEND INTO CORNERS AND UP TO THE CEILING FREE AND UNTETHERED LIGHT AND UNBOUND TO FEEL NO PAIN TO FEEL NO SHAME LIKE A SHADOW PETRA: At what point do you know that you are history? When does your story end? PETRA, AIMEE, CARRIE, TIYE: in that rocking chair, on that porch, In the Porsche wrapped around an elm tree Old limbs spreading, remembering rope and gleeful Laughter pulling hearses and street fire, fire that melted Hundred-year-old honey, and dripped, with the shit of the dead Into the picnic, sweethearts on the lawn, white sheets on the ground, In the wind, skins incised tattooed painted tarred, holes In the bark where squirrels cower before the storm, Red bush tails twitching in the jar With the waxen seal that says here is history’s frayed swinging end, Amusement by any other name, abandoned garden fete, Old eyehole, stitches unraveling as the tree Sways with the impact of metal, crash, again and again? CHORUS: EH EH EH ATA BATEY OH ATA BATEY OH EH EH EH ATA BATEY OH ATA BATEY OH

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THE ANARCHA PROJECT: A PROCESS REPORT

The Anarcha Project lived for three years. I went and researched at the Institute for Medical Humanities in Galveston, Texas, and at the Wellcome Trust in London, and I wrote a paper on the historical data available, their intersection with material on slavery medicine, on racialization and pain perception, on gynecology and the switch from midwifery to medical doctor specialization. But after my work as a single researcher in the archive, the process of Anarcha had to move elsewhere. In these pages, I share what I learned as a performance-maker.

Fractured storytelling The Anarcha history essay you just read became the starting point of a very different journey, a journey with which the dramatic script above intersected and traversed. I had had it with writing about Sims, about whether he was a good guy, a bad guy, and why, and have his name, his big name, eclipse again and again these women who were shadows and remained so. There was no way to find out more about them, even though pouring over old city maps of Montgomery gave me an illusion of knowing what was there, the heady scent of discovery that I, not trained as a historian, felt easily. There was no way to know how they dealt with it all. I didn’t want them to become saints or martyrs, not victims or overcomers, in my story, and I did not know how I could continue writing about them. I finally took to heart the criticism of African scholars with the fascination around the Hottentott Venus: do not write about the spectacularly exceptional as exceptional. It covers up the very real everyday, and the very real reverberations today, now, here. Cultural scholars and artists today do not know what happened. And we need to live in not knowing. We can’t fill out, fantasize, about what was then. Instead, we need to live up to the traces of it all today. Have you heard about Marion Sims? Petra kept asking and I kept being embarrassed. Surely the passersby wouldn’t have known about a white doctor from 1840. Each site she asked if they had heard of Marion Sims. Her British/German accent kept bouncing off of unaccustomed southern ears. Our dialects went ringing through the southern streets of springtime Montgomery. They responded with avoidance and/or puzzlement. – no, who was he? – In my mind – don’t nobody like that live anywhere around here. – Anita Gonzalez (Anarcha Anti-Archive)

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Figure 14 Anarcha visit Old Town Alabama, Montgomery. Carrie Sandahl and Anita Gonzalez

Contentious community After my historical archival study was done, I invited a number of other scholars and artists to join me, to explore all this together, with many different methods, and many different agendas. Carrie Sandahl, Anita Gonzalez, Tiye Giraud, and Aimee Cox, together with me, led The Anarcha Project: dancers, musicians, disability scholars, Center for Independent Living board members, shelter organizers, social activists, healers. We worked in Montgomery, Alabama. We traveled. We fought. We disagreed. We sneered. We accused ourselves of racial or ableist insensitivity. And then we just got back together again and worked. For our project was one of social justice, and there was always anger in our project. In every residency, we gave a performative lecture, and the script included in this book gives the flavor of one of those. The lecture changed every time, marked by what we were experiencing and learning. Only the quotes from my Anarcha Project essay remained stable. We learned a lot, and we quickly learned what we could or could not do

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Figure 15 Anarcha visit in Montgomery. Carpark site of J. Marion Sims’s clinic. Performer: Tabitha Chester

with a project like this. In one of the worst experiences of the Anarcha Project, we loosened hate. In a poets-in-schools workshop in Detroit, we found ourselves in a unique situation, in the form of a medical question and answer session about fistula and slave medicine. Instead of talking about the aesthetics of witnessing, or approaches to working with this kind of material, we were right in the blood and gore, and we, the workshop leaders Anita, Carrie, and myself, did not know how we got there. The atmosphere was sullen and oppressive. We found out later that the organizer of the workshop had not informed her participants of the nature of our project, had not given people the option to stay away from something so upsetting. And we had not checked in properly, had not found out why exactly people were in the circle with us. And so we all found ourselves with a trainwreck on our hands, and since then, we have never once shared the medical details of what happened in a workshop setting. We check and recheck that participants have read the Anarcha Project essay, or at least looked over it. When we give lectures,

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we state that we will not talk about the medical details of the case, citing this workshop experience of trauma and anger. This can mean that for some people, Anarcha workshops and sharings feel somewhat nebulous: there is a secret at the heart of the work, there’s something unspoken in the room. This makes it very hard to create Anarcha performances for the general public, for people who come to the material without some information about the events. This is work on the edge of sensationalism and sickening trauma, and there’s the draw of a narrative that speaks about healing and closure. We lean against this kind of experience. To present the historical information, or to create a healed narrative that smoothes over the reverberations of this past, can activate hate, revisit abjection, and can feel like a fist to the gut. The earth’s crust itself has joined in on this one. I woke up to a small earthquake – 2.7, but close by, within 10 miles, out in the ocean. Sounded and felt like someone dropped something heavy on our roof. We like these kind of earthquakes – the small ones are good, they relieve the stress on the faults and make a Big One less likely. Or that’s what they say, anyway. And the small sounds and words, emitted steadily, should relieve the stress enough to avoid the shouting and screaming, I guess. Maybe sometimes. Penny Richards (Cyber Anarcha in the Anarcha Anti-Archive)

Touch contact Hands touching stone, reaching out to other hands, handing on the hard object between soft skin surfaces. To me, the Washington residency I described at the outset of this section was one of the most successful sharings. It used physical touch, sense impression, not to re-create the internal clench, but the opening of hands. This physical action, in its physicality, allows us to share some of Anarcha’s secrets, without poisoning our contemporary world with the stink of history. As hands open, but not link together in the ease of the circle, they explore the touch of a stranger. That stranger’s physicality, smell, warmth, and pulse can become the baseline of a performance. Healing Touches the time I remember my mother carrying me around everyone knew how my parents loved me

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and would not discard their first born as other well meaning folks told them to do they were young, they could and did have more healthy children but they would not abandon me the healing touch is knowing I am precious to them the time when he held me in his arms and would walk holding my hand down the street and was proud to be in public with me, kissing me telling me that I was beautiful the healing touch is knowing his need for me the time when they were each born in their turns perfectly formed little beings in my sole care tended them, fed, washed, comforted them, the healing touch is knowing they are mine Eleanor Lisney (Cyber Anarcha in the Anarcha Anti-Archive)

Shame We get asked a lot, individually and as a collective: Why are you doing this? We all have different reasons for being in the project, for being on this exasperating journey of speaking to one another across divisions of ableism, racism, gender pain, old hurt, and new hurts. Here are my two main reasons, and the reasons why I started the Anarcha Project anew, as a collaborative effort: 1. Today, incontinence is still the dividing line for many people, the line between living at home and living in an institution. Many disabled people know the heartache of shame and anger when faced with issues of bladder and bowel. Many of the Anarcha issues, expulsion, separation, the painfulness of dealing with it all physically and psychically, are still part of our experience, and they are still not spoken about. In many Anarcha workshops, people spoke up about catheters, about access to incontinence care, about smells, about stink, and shame, shame, shame. The Anarcha Project allowed for a place to explore shame: about piss and shit, about blood down there, about buttocks, about denied children, about what is under the skirts and trousers. I believe that by opening up a historical perspective on our feelings today, and on our politics today, we can take up the tools of change.

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It all Depends® A river of fluid connects Anarcha’s past to disability culture’s present. Our society cannot tolerate incontinence; once beyond infancy, incontinence divides the human from the non-human, the right to live and the imperative to die. Our Center for Independent Living maintains a supply closet with incontinence products for those who cannot afford them. These products are prohibitively expensive for folks living on a meager social security check. Often, the inability to pay for these products is the final straw that sends people into nursing homes. Medicare and Medicaid will pay for these products if you’re in a nursing home, but not if you’re living at home. Disabled and elderly people have their freedom taken from them for the simple lack of these products. I have heard people claim they’d rather die than have their children ‘change their diapers.’ I have heard of disabled people confined to their homes because they are rationing their incontinence supplies and cannot afford to change them so that they smell socially acceptable. They’re also afraid that someone will discover that they can’t afford them, and on those grounds have them incarcerated in a nursing home, as if the nursing home really solves the problem. I have also heard stories of disabled and elderly people being left by nurses in their own urine and feces, the maceration causing skin breakdown, which leads to infected bedsores, which leads to death. Incontinence is a terrible reminder that we are not independent creatures with full control over our bodies. We depend on others for nourishment and for eliminating waste. When incontinent, we are reduced to our waste. We become the refuse of society, not to be lovingly cared for, but to be flushed away like a piece of shit or sanitized out of existence. Carrie Sandahl (Anarcha Anti-Archive, 2008) 2. In many African-American communities, biomedicine, in particular experimental medicine, is still seen as deeply problematic. History still lives on: Tuskeegee, an iconic place in US race relations, is a mere 30-minutes drive from the slave shack hospital we explored in Montgomery, Alabama. Anarcha’s story is for us, the female, the shushed up version of Tuskeegee, where poor black men were the subjects of medical experimentation for syphilis research. Shushing up: when our black collaborators talked to their mums and grandmums about our project, they heard again and again what I, as one

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of the white collaborators, only saw in people’s eyes: Why do you want to bring that up again? I have seen plenty of these blank, putdown stares during Anarcha, and during other community projects, and I need to recognize when there is no connection between artistorganizers and participants, between participants and their local community, between one person and another. We need to listen and take note and action when there is something unspoken in the room, when privilege and insider status muddy the waters, when we hold ourselves tight. There is pain inflicted in the retelling. There is shame. There is our shame, our personal implication in nets of privilege, and there is historical shame and projection. Anarcha, Lucy, Betsy: those women would probably have been ashamed to have their lives exposed. The Doctor’s Office [At the Old Alabama Town recreation site] the Doctor’s Office fascinated me with its primitive tools. There was the prototype speculum, which surprisingly resembled other inspection tools within the glass case, like tools for exploring mouths. In general I suppose that body cavities need opening if you are to investigate their ailments. A poster on the wall listed the names of famous doctors of Montgomery County and there he was, Sims. Petra had finally found him. The museum tour guide didn’t know of him, but here was tactile archival evidence of his experiments and his atrocities against slave women. Of course the women weren’t mentioned. In a strange way though, Sims’s presence within the historical memory of the town of Alabama validated their existence, because he wrote down their names, I could know that to look through him I might find them, these absent women whose historical circumstances in some ways report my own history. My grandmother’s mother was a South Carolina slave. The other parts of my family were free West Indian ‘conch’ people. Grandma Nash somehow emerged from underneath the scrawled name of Marion Sims as a potential life in the historical record of slave atrocities and women. This could be a breach in the historical record that might allow for her presence. There they lay, the rusty tools encrusted. Layers of red history imbedded within them. I purchased a set of rusty keys from the little market in the museum; rusty keys that could open up a history of hidden pains. Anita Gonzalez (Anarcha Anti-Archive, 2008)

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Figure 16 Anarcha workshop, Anita Gonzalez and Tabitha Chester

We (and this is not a royal we, but the ‘we’ of the collaborators) better have an answer to why we bring it up again. The threat of the institution is one of those reasons: the nursing home, the prison, the waiting room in a Medicare facility. And there are other reasons: today, many African-American women are still undermedicated for pain. Slavery medicine ideas about black women’s capacity for pain are still alive and well, not only in medical communities, but also in the very households of people, not only in the United States, but internationally. Those of us who have worked in shelters and with domestic violence survivors of color know about these painful connections, the assumptions, the demands, the ideas that some people can carry pain better than others. When we know the histories of how medicine came to its knowledges, and how these knowledges flowed into the population, all of us can feel more empowered to speak up, and to collaborate with medical professionals, social workers, allies, and each other on terms that acknowledge shame, exploitation, the burden of the past, but do not make collaborative futures impossible. But we – the we of activists and artists – have to tread carefully. We have to respect the way that people speak, cultural ways of dealing

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with healing and care. ‘Piss on pity,’ the battle cry of an originally predominantly white US disability culture, does not work for everybody. That’s one of the things we learned the hard way in Anarcha: some of the crip culture ways of speaking deadened communication. In some of our discussions, people who came to us found disability activists’ outspokenness about issues of great privacy, pissing and shitting, troubling and distancing. Any one day at the In-Home-Support-Services agency in Oakland, California, for instance, shows starkly that a lot of careproviders are of color, and a lot of care-recipients white: to ignore these racialized post-slavery, postcolonial labor practices and their impact on calls for ‘independence’ would be to white-wash aspects of privilege. In our Anarcha discussions, we challenged disability activism’s emphasis on independent living, and we discussed together that there are different models of being interdependent, in community, loved and safe, and yet with space to grow. We also learned together to use different lenses when we discuss our stories: disability activism has a different way of framing the basis of these stories than, for instance, poverty activist do, or radical health activists. The concept of disability as a minority identity does not always translate well in environments where intersecting and complicating identities (of racialization, ethnic affiliation, gender, class, etc.) can expose the privilege of unmarked identities. If we truly want a more inclusive ‘disability studies,’ we need to interrogate the history of our terms not only in terms of definitions and intersections, but also in terms of cultural legibility and habits. A heterosexual African-American blind gospel singer in a close-knit religious community might not experience the same kind of ‘disability experience,’ or even identify with disability in the same way, at the same times, as a queer Asian blind university student. A white queer performance artist with mobility issues who has a history of oppositional encounters and fosters them in his art experiences and personal narrative lives disability in a different way from a Latina elder who experiences bladder control issues post-cancer treatment. Unless we begin to take seriously some of the ways that different cultural paths around issues of trauma, personal hurt, and pain are differently dealt with in different classes, ethnic groups, and genders, we will not have a more culturally diverse disability studies, or a cross-cultural performance studies of embodiment. In Anarcha, one of the ways that we spoke across widely different experiences and moved into political performance was through personal vulnerability. This is not (just) the vulnerability remembered and told in a coherent life story, but also the vulnerability in the moment,

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Figure 17 Anarcha workshop in Ann Arbor, Michigan

in the encounter, in the here and now, in the time and space outside the safety of a story. This is the vulnerability of being in process, in improvisation, of getting it wrong, of getting what one knows and thinks and feels challenged and transformed. This is the vulnerability Aimee talks about in her account of our Anarcha Symposium at the University of Michigan: Aimee Meredith Cox (from ‘With Anarcha: A Meditative Diary on Personal Healing and Touching History Through Performance Practice,’ Anarcha Anti-Archive, 2008) In April 2007, the Anarcha core collaborators held a symposium where nearly thirty professors, performance artists, community activists, healers and students from around the world convened to wrestle with the theoretical, methodological and applied concerns of working in and across both the boundaries of identity and the boundaries of practice. The symposium participants have spent the great majority of their personal and professional lives contending with the implications

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of disability, race, gender, and sexuality and how these often overlapping, sometimes fragmented identities inform their work. The symposium was divided into four strands or thematic categories that were further explored and defined by the participants. These themes included: the development of a performance piece; articulation of a manifesto on working at the intersection of black and crip culture studies, and a healing event or ritual that addresses the need for balance and health in our work. Other than presenting a performance lecture on the first day of the symposium, the core collaborators’ participation was limited to providing the resources necessary for the participants to work together in their thematic groups. … On the last day of the symposium, the participants presented each of the three thematic strands in the black-box theatre space, and this became my first viewing of their process and product. Sitting in the audience, I realized that this was the first time I was experiencing Anarcha from the perspective of an observer. As the participants passionately read their words, danced, and moved with one another, spoke from projected media images, sang out in ecstasy and pain, laughed and cried from the deepest, most private parts of their being, I moved from observer to participant, propelled by their naked vulnerability and honesty. The performances could only be properly read when the audience members brought themselves fully to the stage with the Anarcha performers, and willingly welcomed the intimacy created there. I was touched physically, as I felt the release of suppressed tension and anger flow through my veins, and emotionally, surprised by the warmth of my tears. Although I am always working towards emotional vulnerability and the shedding of self-consciousness in my own Anarcha performance, I am operating from a script whose words I know and can anticipate. Approaching Anarcha from this new ethnographic place of participant-observer, I entered into a realm of intimacy that I could not predict nor necessarily control, and it made me feel both unstable and empowered. In her work on the portrayal of notions of respectability in AfricanAmerican literature, Candice Jenkins (2007) considers how the history of sexual objectification of black women impacts our ability to lead healthy, whole, self-directed, sexually intimate lives in the present. Jenkins argues that the norms of respectability meant to protect blacks in general and black women in particular from being viewed and treated as uncivilized in mainstream society have the

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power to transcend the public sector and seep into our inner most private lives. Even though I grew up in a family where I was made to understand my right to be free in the broadest sense of the word, and encouraged to express myself from my uniquely raced and gendered perspective, the norms and expectations of the world outside of my home inevitably impacted how I saw myself both outside of and within this intimate, protected space. I understood that my black female identity meant that my boldness could easily be read as aggression and my sensuality as vulgarity. Recently in my work with young black women living in lowincome communities, I have been thinking about the issue of respectability and its relationship to social mobility, especially for those with very few economic and political resources to their avail. Self-imposed behavior management and adherence to normative notions of self-improvement can seem like the best routes to moving towards the center when you are black, female, poor, disabled, homosexual, or in any way threatening to the bodily status quo. I wonder how even the most seemingly benign mandates to be normal, improve, and deny our selves in order to ‘fit in’ constrain our attempts to make connections and live fully in this world across boundaries and through difference. How does working to be respectable destroy our capacity for intimacy? This question emerged for me during the symposium performance as a vestige of Marion J. Sims’s work and the work of a society that has valorized him while silencing the women he left broken. How much shame are we all holding onto and what will allow for its release? In being profoundly touched by the symposium participants, I felt that I found an answer in their interactive performances. The performers gave me permission to forgive myself for taking on a societal shame that is not mine, that never really belonged to me. I was also asked to trust in the transformative power of the intimacy and vulnerability that underlies collaborative performance. And, it is from this deeply personal realm that self healing begins and on which the larger collective work of social change relies. (Cox, 2008) One of the Anarcha symposium participants, Rebecca Wanzo, writes about the Anarcha Project in the context of African-American sentimental storytelling, and she discusses the historical context essay, the performative lecture, and the symposium performance she participated

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in. In relation to the political mobilization of affect and emotion, she sums up her analysis of the project: What makes The Anarcha Project a progressive sentimental political project – one that moves forward and away from the traditional attachments of individualistic feelings and self-transformation as central to political projects – is the refusal to believe that a narrow framing or identification can accommodate all that should be included in the archival record of these women’s histories. Many of us who participated in this project struggle with the fact that a part of the story is ‘us’ and ‘not us,’ and to work through our feelings about this reality. The Anarcha story transforms the historical archive into one of affective negotiations. When sentimental political storytelling makes not only feeling, but also working through feeling, an object and part of the historical record, sentimentality is not passive – it is doing something. … This kind of work pushes people to be participants and not spectators and to question their affective attachments. While they do not have to let go of their individual attachments, they are taught to expand the boundaries of their affect and to recognize that not everything includes them – and that furthermore, such exclusions are often painful to address. However, dwelling in discomfort, even pain, can push people to see and conduct themselves differently. (2009: 157, original emphasis)

Arts-methods: song Having been called by call and response back to music, let’s prepare our descent: let the call of call and response, passionate utterance and response – articulated in the scene Douglass identifies as ‘the bloodstained gate’ through which he entered into subjection and subjectivity, more precisely, in the phonography of the very screams that open the way into the knowledge of slavery and the knowledge of freedom –operate as a kind of anacrusis (a note or beat or musicked word improvised through the opposition of speech and writing before the definition of rhythm and melody). (Moten, 2003: 21–2) Opening ourselves: how can we divide the words from the melody, our swaying presence from the sonorous history of the gospel song,

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the moan from the scream, the rocking of comfort from illusionary pleasures of identification, a moment from story, shadows from consciousness? In Anarcha, we found ourselves listening to one of our collaborators, Tabitha Chester, a Southern Minister’s daughter, who was able to decode so much of the slave shacks we visited in Alabama. She saw more than those of us, black or white, who do not embrace Christian values. She pointed out the crosses, the bible verses, the stories behind particular photographs and the religious conventions behind them. She made us see that religion would have been a major part of the lives of these women, and a source of strength. And so, we all started to research and sing gospel songs, to complement the West-African songs we had already in our repertoire. Our methods grew through accretion, chance, and by trying to listen to silences, following the hostile, turnedaway eyes. I am drawn to the scene where the actors trace their own shadows on the ground which turns into a circle dance with hospital cots. What is the significance of the shadow in this piece? I see a cool darkness, a place of respite where one can hide or retreat to in order to regain strength, if only for a short while. But conversely, shadows can be a place where monsters lurk, The Abyss. But in a life of harsh truths and un-anesthetized pain, Anarcha, Betsy, and Lucy perhaps might choose to navigate the abyss. Their spiritual belief system, which probably is some amalgam of Christianity and African Animism, might enable them to find some solace in that darkness. To Feel No Pain To Feel No Shame Like a Shadow, I glide over walls Cool & Silent, I bend into corners And up to the ceiling Free & untethered, Light & unbound To Feel No Pain To Feel No Shame Like a Shadow……. The song is multilayered in melody and rhythmic structure. It starts low and sails higher and higher. It is slow and lilting at first… minor and melancholy with spaces for instrumentation to glide between phrases. Then it is reprised with an overlay or counterpoint of voices

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and instruments that gives it an increase… a fuller, lusher, swell. Just underneath the last few phrases, percussion slips in, subtle at first. Perhaps handclaps, the shadow of the church, the rhythm called calypso, the foundation of lively Black church music. The words lean rock, push and dance with one another. As the song ends, leaving the handclaps bare, more percussion is quickly added. Perhaps, African ago-go bell or Brazilian Pandiero. A melodic chant is revealed. … Searching the abyss, going down through the layers. The chant is not an original one from Africa. Rather, it is a vocable, a scat that suggests Africa as well as a sense of release. I have felt this release many times in the Black church as well as in live African ceremonial and party music. The dense sound of human voices riding on loping percussion. The surge of energy, power, and strength. I want to believe that Anarcha and family could call this down, could call upon this power and create a space of peace and revival for themselves. I have to believe. Tiye Giraud (Anarcha Anti-Archive, 2008)

The Anti-Archive We worked with over 1000 people during the many Anarcha residencies in Alabama, North Carolina, California, Michigan, Ohio, Texas, and Washington. Many people only caught a little glimpse of what it was all about, but many read the project essay, and learned something more about the fact that medicine has a history, that ethical decisions are part of medical practice, and that there are costs that bring responsibilities. Leading up to and during the two Ann Arbor residencies, we had also opened up the circle of participants to Cyber-Participants, in the CyberAnarcha. These people, not physically able to be with us, but all over the world, responded to instructions I had sent out, and we collected their responses and wove them into our residency days by reading them out at the beginning of workshops and lectures, and letting them influence our work. Anarcha Cyber Gifts – sample instructions • This morning, take ten minutes to work with shadows. Find your own body’s shadow. Respond to it, to the joyful and hard secrets it holds, to its evasive and elegant movement, to its limits and its dissolves. Write (or whatever your practice) for ten minutes, prose,

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poetry, dialogue, dance, song, whatever flows, and share what you wrote or created with us! • This morning, let sound run like water over your body. Begin with a hum, and then open out as your mouth and throat widens. Vibrate with the sound, find vowels and consonants that run and drip and wash over you, let them be cast off your body, pool at your feet, spray around you. Then sound a steady flow engulfing you warmly. Write in response, remembering the sounds and their sensations. • What are healing touches in your life? Make those the center of your poem, and write out towards the paper’s edge and back in again. As always, we are happy to receive what you want to share, and we are happy to just be in your thoughts, too. Many people shared parts of their stories: experiences of being in contact with medical professionals, experiences of the threat of the nursing home, poems about catheters, being lonely in hospitals, racism in hospitals, white patients with black nurses, black contemporary femininity, gynecologists’ contemporary eugenic impulses towards disabled women who want children, fibroid tumors, contemporary fistula post-cancer treatments. Many of these experiences became part of the Anarcha AntiArchive: a wild collection of about 200 webpages, linked and accessed in often unpredictable ways, with chance generators disrupting linearity and causality in (sometimes frustrating) ways. Personal history and social history merge and coalesce in those pages. like souls, neither touching nor mingling, never composing a set, these positionless fragments depict the beauties of transition and isolation at once. Belonging to the chronology of the instant, a book of them would have to present them as a discontinuous series, a book from which each page could be taken out. (Warner, 1999, electronic resource) How to host a Past Collective: setting up a circle The generating part of the project closed in 2008, but I still give presentations with the material we generated. But what formal methods can I select, ethically and responsibly, to present the multivocal nature of the Anarcha Project, given that it is now just me in the conference room, given that the point of the project was the intersection of multiple stories, not the fetishization of individual ones?

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In a number of recent presentations, I used a circle exercise to engage in fragmented, shrouded disclosure, to keep privacies safe, and to find material contact with one another. In these Anarcha rounds, we all take words into our mouths, and try to stay conscious to the nature of this act – taking something into our mouth, rather than acting out words, normalizing them into spoken language. Take this into your mouth – transgression, sacrament, ritual, entrainment, from one body to another. So before an Anarcha presentation, I print out random pages from our Anarcha Anti-Archive. A number of the links in the website pull up material through chance procedures (a process implemented by Olimpias collaborator Jay Steichmann, who investigated digital literacies). So whenever you click that particular link, you get to a different page in the anti-archive, and you cannot retrace your step, or mark your place in an unfolding narrative. What comes up are poems, story fragments, images, all submitted in response to the cyber Anarcha prompts, from many people nationally and internationally, from Wales to Malaysia. I pull up a good number of these pages, combined with some of the pages written by the core collaborators of our project. In the sharing that follows, I do not speak about the heart of the project, but I mark that I leave things unsaid. The people in the round, then, have only a vague sense of what the project is about, and I explain why this formal frame appears instead of open disclosure. I ask their permission to proceed. They either give it to me, or, if not, our circle becomes something else, and we speak about performance practices and formal means of speaking about trauma instead. Having marked the space as one in which we agree on a specific framework or rule, having set up a space apart, we begin. One by one, raw and without preamble, people in the circle read what they have been given. The meaning of what they are reading only comes to them as they are reading – they have had little time to familiarize themselves with the words beforehand. Someone reads a poem about being held as a baby by one’s mother, being accepted, even through the writer’s body is so different. Someone reads about the persistence of shame. Someone reads about how incontinence is so often the borderline for independent living in contemporary cultures – up to here, freedom, past this point, at the point of leakage, the nursing home. Someone reads about her mother’s upset about digging up that awful past again. Someone reads about fibroid tumors in African-American women. Someone reads about the Venus Hottentott. Someone begins to cry (most recently at a Feminisms and Rhetorics conference), crying softly, and there is no

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knowing about why, but there is companionship, and quiet contemplation, and it is ok. These presentations start with low-key chatting, setting up the circle, and end the same way – once we have made our way around, once our fragments are read out, we just sit and talk, no ‘presentation-mode’ emerges, and no one gets up into high drama. We’ve all taken strange things into our mouths, talked of piss and shit and blood and race and oppression and love and survival. Did we get free of ourselves, of the inevitability of narrative, in the attention to articulation, elocution, the performance of words, even if just for a moment? Did we taste the words on our tongues, material physical traces of a different form of embodiment? Container/conclusion The poet Anne Carson attended one of our joint Anarcha presentations, with all core collaborators present, and her comments to us that evening helped to frame our subsequent work for me – she called our work creating a container, a vessel for experience, without sharing the specifics of that experience. I have since explored this image further, thought about amphorae as commemorative vases, thought of earth and clay as materials, thought of the illustrations on ancient vessels, on pattern and form, flow and movement. The vessel as matter: deterritorializing and reterritorializing, familiar and strange, shaping into form, and shaped out of formlessness, fired in the light and baked in the earth’s darkness, hardened only to crumble and crack again with the ages, returning to dust. These disclosures are in time and space – they are not narratives that create an archive or a body of knowledge. They breathe, and vibrate, and press against skin. What can be contained, what leaks, what finds its way through the membrane? The journey is over, for now: we have visited the site of the shack, we have goofed around Sims’s statues, we made the Montgomery historian really uncomfortable when we came and asked about Anarcha, we spoke with Montgomery residents, and developed ideas in the Auburn University theatre. We have spoken at African-American Cultural Centers and at Centers for Independent Living. We have taken up residence online, joining other activists who ask medical practitioners to remember the stories of their instruments, like the story of the speculum. Those of us deeply involved in the project have learned a lot, mainly about how we are able to hurt each other without knowing it, and how deep our pain can be. And a good number of medical students have now more material to explore bioethics in practice, historically and today.

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But does that change our world? That’s the question that stands at the end of these processes, of social justice work, as we take stock, and see how we can grow from our experiences. These are not ADAPT actions, or inventions by poverty activists, they do not necessarily challenge nursing home directors, they do not speak to the legislature directly. But in individual instances, one bit at a time, these processes can change the world: participating in our workshops can alleviate some fears. People touch the hard stone together. Handing on a feather can shape some solidarity. Witnessing a glimpsed story can show people that they are not alone in their frustration and shame. The rhythm of the dance can galvanize anger, which can in turn channel into activism, and it can release joy, giving us strength. In the droning of our words, us listening to each other across time and space, we open up spaces for voices that are not in the circle, that go unheard, but who press against our presence, our present, our vessel. In the end, it is the journey of social justice art projects that counts, staying open, and in contact, in the act of continuing to speak, hand to hand.

Part 4 Myth-Making

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7 Eurydice and Tiresias

Part 4 makes a home with mythological images, archetypal stories remembered in density and experience. Before I move to the figure of Tiresias, I dwell again, as in the Chisenhale corridor, with Eurydice, see her receding in the underworld, a limping figure, snake-bit, in limbo. She is the recurring figure in my personal biomythography, to cite Audre Lorde’s term of female-focused reclamation, developed in her book Zami (1982), which takes its title from a Caribbean word for women working together, as friends and lovers – a lesbian culture-ing. When I think of Eurydice, or read feminist poets’ visitations with her story, she limps, and I imagine the sudden sharp pain of poison circulating in her limb. In Monique Wittig’s retelling of Eurydice’s story (1976: 16–17), age, decay, and permeable membranes shiver into erotic imagery as Eurydice escapes the underworld in an all-women world. I remember dark mezzo-soprano operatic sound swelling up and articulating this name, Eurydice, which flows differently from my German tongue than in its English rhythm.1 The two figures, Tiresias and Eurydice, have a meeting point in Orpheus, who tries but fails to reclaim her from the depths of the earth. Earlier, Orpheus meets Tiresias while stumbling around in the underworld. But let’s leave the singer to his fame, and find out more of the story of Tiresias. In this part, those relegated to myth’s margin enter into the central spot, and it is the central characters, the powerful (and falling) patriarchs of Olympus – Orpheus, Oedipus, Pentheus and Kreon – who step to the side of this stage. We know of the cultural obsession with disability, which gives us Oedipus, Medusa, Hephaistus, Captains Hook and Ahab, and many other disabled characters throughout literature and mythology.2 But disability as a form of embodiment, as a way of being in the world, is 209

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often shrouded by the excessive signification of literary topoi exploring disability’s outsider status.3 I am interested in how and when our specific forms of embodiment and our movement vocabularies become the motor for representation. How can my biomythographical imagination of Eurydice’s limp and her encounter with snakes leave traces in textual production? How can Tiresias’s oracular perception, the flow of past, present, and future, set up formal echoes? Writing about performance, photos like pearls glide through our fingers. During 2007/8, I directed the Tiresias Project, which allowed participants to reflect on bodies, myths, transformations, disability and disability culture. Tiresias had many different aspects: photography and writing workshops in Michigan, Rhode Island, and California; dance workshops in studios, barns, and beaches; a community performance with the Center for Independent Living in Ann Arbor and my Disability Culture undergraduate class; an award-winning dancepoetryvideo; and a photography exhibit with portraits of many disability culture performers and writers. At the heart of Tiresias are its secrets, its withholding, its oracular veiling. Much remains unsaid and unseen. A significant part of the project is an archive of gorgeous wet-process photos that will never be seen in public, since guarded personal journeys with visibility and secrets were an important aspect of our work. Participants who exposed themselves to the camera knew that they had total control over whether or not the images would be released. Our invitation was one of time and space, a place to explore personal eroticism with full awareness of the price that might be paid for visibility. Over the course of a year the Tiresias Project welcomed collaborators in performance events and photo-shoots. We met for a few days in various locations, both inside studios and out in nature, danced together, and posed for Lisa Steichmann’s camera while talking about disability culture, erotics, and difference, and the poetics of becoming visible.4 In between our meetings, the US and European artists engaged in this project discussed their experiences and connections on a list-serv. We engaged in oracular practice: we called a new land into being, unclear, shape-shifting, and built on the terrain of our bodies. What is seen, what is known, what is spoken: these are the questions around photography and performance that fuelled our exploration. I first became fascinated by Tiresias after reading disability culture poets’ and critics’ reworking of ancient myth,5 while writing about my personal investment in Greek mythology.6 I watched Martha Graham’s dance Night Journey, in which the Oedipus myth is retold through Jocasta’s eyes, with Tiresias as time-keeper and persecutor. Graham created her

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feminist version – how can we, as disability culture artists, do the same? What happens when we make the shifting cripple elder the focus of our work? What can I find here for my own body, shifting in time? In our workshops/performances, we take Tiresias out of the background fabric of history.7 Now Tiresias and his disability, her undecidable bodily status, the malleability of his body, the shimmer of hir gender, her tri-pedal step and his blind/seeing eyes become the focal point of disability cultural work.8 We open ourselves up to an exploration of boundaries, try to reclaim seduction for disability: not as a freak parade, but as sensuous bodies engaged sensuously with the world.9 At the heart of our show are images of seduction, an erotics of encounter with disability’s difference which problematizes conventional notions of disabled people as tragic, sexless, or deficient.10 The aim of the next piece of Tiresias writing (Chapter 8) is to echo the embodied touching of myth, moments of temporal constellation, moments between word and sensation. I think of this dramaturgical creative-non-fiction chapter as a dance across terrain and time: a piece of work that shifts, movement engendered by medialities – the motion of a waltz, of connection and disconnect, of touch and distance, held in tension between visible and invisible, clear and obscure, private and public, given and withheld.

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Myth-Making

TIRESIAN JOURNEYS

At the heart of the Tiresias Project was a listserv on which participants wrote about what it meant for them to be part of the project, what thoughts and experiences came up for them. This chapter emerged from my own writings on that listserv while I was traveling and gathering Tiresias information. It functions as my dramaturgical meditation toward and during the project. It brings me back to my own exploration of process, an embodied poetics that merges my movement patterns, environmental exploration, historical backgrounds, and the resonances of words. In these choreographed thoughts, the Tiresias Project emerges in its ambivalences, its halting steps, and its oracular nature. These multiple emergences link back to the rhizomatics of disability, its crystalline refractory shape, images thrown into the world. The photos by Lisa Steichmann and the video stills from the dancepoetryvideo are neither illustrative of my text, nor described in the chapter: they carry their own rhetorical weight in this meditation on performance processes and embodiment.

I I drive in the desert: there’s the spice of baking plants in my nose, and my mouth is parched, even though I drank at every fountain in the park. My skin tingles. I’ve been out in the sun too long, and it’s time to head for cool shade. But in this rental car, I think about the journey that brought me here: snakes, looking over foreign, strange landscapes, stepping, with my cane, through meadows, forests, over hills. Searching for what? Tiresias.

II Tiresias penetrates Greek drama. He steps, dusty, leaning on a staff, onto the stage. She is the hermaphroditic shapeshifter who has lived both as a man, as Zeus’s priest, and as a woman, as a prostitute of great renown. Tiresias wields his and her staff throughout Antigone, Oedipus, The Bacchae, through Ovid’s Metamorphoses and many other canonical texts where his blindness, her cripdom, offers special status as advisor to the mighty. But he, she never speaks straight: the witness of the Wasteland, Tiresias speaks with a poet’s tongue, revealing only puzzles. Tiresias: priest, prostitute, fellow crip, disabled man/woman, aging shapeshifter, trickster, oracle. A figure who walks in the countryside,

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unbounded. I am on the tracks of this figure. It all started with a ramble in the countryside, and snakes.

III Over six months in 2007, disabled artists came together to explore the beauty of our bodies, perform defiantly our place in the loss and richness of a sensuous encounter. This is no place of positive images. Many of us had to think hard about placing ourselves naked in front of a camera. Everybody had to make a decision about public display, and retrace a personal journey of shame and joy. In the photos, you see bodies with burnt skin and amputations showing in ways respectful to us (and unavailable to the devotee scene that devours such images), ample bodies of size that roll carefully with bodily pain and the weight of public disgust, spastic limbs that unfold tenderly to show filigree beauty, blind people touching others. In dance and photography, we enact transformations that know the abjection our bodies are placed in, but also know the pleasures our bodies open up to us. The project happens in the name of Tiresias: we claim Greek gods with a sarcastic eye, colonize the theatre of Dionysus, invade the outdoors of olive groves playfully. Disabled people and our fascinating bodies, senses and minds live in Greek mythology. In the Tiresias Project, we extend that lineage, and use our own disabled bodies to reshape myth. Our photo shoots recapitulate Tiresian sites as we drop

Figure 18 Tiresias video still. Performer: Neil Marcus

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Figure 19 Tiresias photo series. Performer: Kristina Yates (Photographer: Lisa Steichmann)

our clothes in nature reserves and university campuses, in performance studios and private barns. We roll like snakes over each other, twist for Lisa Steichmann’s camera, and talk and talk about what we are doing, what is hard or easy to do, what it means to be disabled, older, a sexual being, in erotic contact. We write poetry. We break bread together, find nourishment in each other’s company. And we change.

IV Tiresias leaves the temple. Greek temples are open, wide and welcoming to the winds: worship happens outside, where burnt offerings tempt the taste buds of the gods. Inside, in the cella, the statue of Zeus looks out, smells the smoke, through the thick bars of stone that support the roof. So I can hear Tiresias’s step on the marble, his staff tapping the floor. Maybe he feels a bit frisky today, and whacks his staff against the columns of the colonnade as he walks along – whack, whack, whack, all the way to the end of the row. This place is his home, and he marks

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his territory: small chinks in the marble shaft of the columns speak of a habit of years, a forceful rally against the staff’s downward momentum. The evening walk takes him past olive plantations, rows upon rows of orderly plants, waiting to be productive. And soon, he is in the halfshade of ancient canopies. Old trees, windswept, twist at the edge of the forest. Tiresias, his own body shaped by the unpredictable forces of age, touches the sinuous bark, which peels in long stripes, as if undressing. He enters. Not far off, he hears the brook. He knows the names of the nymphs who live here, knows the stories of their love affairs with mortals and gods, where this one lay, and that one lost her girdle. Whistling in the near dark, he moves to higher ground, where the trees open to the harsh light of the Mediterranean hills. He first hears the insects buzzing around the Ash, before he smells the harsh honey that garlands the old tree in a drapery of drips, exuded by the bark. Clad in an off-white sandal becoming a patrician priest, his foot steps forward, and as he pulls his staff past his hips, to reach up higher, and lift himself to the hill’s crest, he freezes. He hears, no, sees, movement just where his next footstep is ready to fall. Tiresias sees the snakes with startling clarity, an animal’s pulse dilates his eyes, allows for a reaction much younger, much older than his years. Instinctively, he lifts his staff high above his head, and hears as it whistles past his ear, his arm calling on the strength of his back. It lands, hard, on the two twisting bodies that roil in front of him: snakes, copulating, unwary of the human, and of this massive wooden staff that crashes through glittering scales, tissue, cracks two spines, and leaves blood, spreading. Not quite cool blood pools: the temperature of the shade-dappled ground, blood pumped through long thin bodies, liquefied and supple from a day’s coil on sun-heated rocks. Tiresias steps back, his staff spattered, ripped skin hanging off splintered surfaces: skin that won’t molt again, will not enter the cycle of renewal. He is disturbed by his actions and by the swiftness of his response, thoughts catching up only now to what has happened. He feels cold, and hot, and shaken, mesmerized by the bloody mess in front of him. And although he begins to feel unfamiliar pulls in his torso, his loins, he can’t help but look upon the dead bodies. Leaning on his trembling staff, he traces with his eyes the final twitches that shake the corpses, rub them against one another one last time. And the world begins, anew.

V What were the snakes that Tiresias killed, setting in motion his own transformation? I am fascinated by this question, and it is one of many

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that set me on this journey, on this desert road. Since I consciously began to gather material around Tiresian stories, I’ve also become interested in Squamata. Maybe I just like the word, like orange sweet squash in my mouth, or the squirm of my tongue. The Swedish botanist Carl von Linné, better know as Linneaus in the English-speaking world, set the world to order, catalogued and named the creatures of this earth. Goethe, the poet, named Linneaus one of the great influences in his life. Von Linné saw himself as an artist, a poet of the natural world, and knew the power of the word: to name something was to invent it, and thus, on the cover of his Systema Naturae, he names the animals and plants newly created in the Garden of Eden. And to find a name for snakes, he opened these drawers, let the creatures dangle from one to the other, emerging in their specificity in the interplay between orders, letters, words. The snakes are Serpentes, of the order of Squamata, of the class of Sauropsida, of the phyllus Chordata, of the kingdom Animalia. Squamata are scaled reptiles, and if skin encompasses and covers, scales hide, have a sneaky reputation, and people do not like to touch. But as a disabled woman more suspicious of the naturalness of skin, of the given of our bodies, I like scales: I like the overt play with coverage, with something that does not hide a skin, but is it, differently, permeable, geometric up to a point, shimmering. Scales are like words to me: sinuously cladding meaning, not smoothing out those joints between words and world and my breath mouthing them. But I have a magpie mind, and want to know something about that land Tiresias stepped on, about those snakes whose copulation is so fertile, fold staff and spine and gender and genitalia and gods so elegantly around one another in words. In Tucson, in the desert museum, I went to see rattle-snakes. And found them too small for my imagination. Surely, Tiresias cannot have been too rattled by these brown green twigs? In my European imagination (and my German mother-tongue whispers ‘Schlange,’ quite a fullbodied experience, little of the lisp of ‘snake’), snakes have the allure of the dragon: Serpentes, the suborder, holds in it ‘Serpent,’ and that is a word much larger than even anacondas. The serpent is the old name for the dragon, those mythical creatures that guarded the forbidden corners of this earth. ‘Here be dragons’ is what it says on old maps, and sea monsters with ferocious teeth and windy bodies would peep out from lairs, or swim like little figure eights in unexplored oceans. In Northern Arizona, one Hopi story tells of a young female rattlesnake who accompanies a boy who is trying to find his father, who turns out to be the sun: snakes hold wise knowledge in many cultures, and ascension to adulthood steps often over, into, or against a Serpent. Tiresias

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becomes a woman when he kills the snakes. Mythologists explain backstories, backbones to this surprise: the snakes were sacred to the archaic goddess, whose reign preceded the differentiated, taxonomised Mount Olympus with patriarchal Zeus at the helm. The snakes link to mother goddess worship, and to a freer traffic in sexual pleasure than the ones of those figures whose names have given meaning to Freud’s complexes, to the strange twists of human sexuality. But that older goddess is lost in time. Since we know nothing of those rites, those guy mythologists are dreaming, dreaming of a summer of love, and I cannot follow too long in their hippie footsteps. But then, I am a woman, like Tiresias is now. She is a prostitute, and knows all about the other side of sex’s romance, and the size of snakes. I shall be as silent about the specifics of the transformation as Virigina Woolf was. Orlando just woke up. And Tiresias?

VI In the Tiresias videodance, bodies happen. The video moves like a snake, limps, repeats with a twist. Words and bodies appear on the screen, and the boundaries are unclear and oracular. The words are a poem by Jim Ferris, and they speak about time, change, bodily being: ‘The rivers are high now, soon they must burst their banks,’ as we see a nude performer rise out of his electric wheelchair. While a woman explores her reach from a manual chair, coming back to the center, we hear ‘In time, you will bounce to a new beat’ and later, ‘Though in time your organs will huddle together for warmth.’ Near the middle of the video, a voice says

Figure 20 Tiresias video still. Performers: Lynn Manning and Tom Bayer

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the line most disabled people hear all the time: ‘what happened to you?’ The words also appear in the playful captioning on the screen image, placed between two heads linked by a caressing hand. ‘I happened.’ The words multiply, like footprints on the image. Hair twists, shrouds smiles, the heads move closer. A dancer in a wheelchair rolls into red silk. Naked bodies coil together. ‘And now I happen everyday’

VII Baudelaire writes in ‘Crépuscule du soir’: Against the lamplight, whose shivering is the wind’s, Prostitution spreads its light and life in the streets: Like an anthill opening its issue it penetrates Mysteriously everywhere by its own occult route; Like an enemy mining the foundations of a fort, Or a worm in an apple, eating what all should eat, It circulates securely in the city’s clogged heart. The worm in the apple: another snake image winds its way into the byways of the established order, the fort, the clogged heart: the (male) body politic is run over by this vital (viral) animality. The fallen woman’s utterly foreign order circulates beneath one’s nose, non-sensate to ourselves, just as blood only comes to our mind when we bleed, or when a sudden fright brings our heartbeat into our ears. Tiresias has fallen into the other side, against the lamplight. The casual lean against the lamppost, the more urgent lean in the back alley and the moths attracted helplessly to light: they all come together in one of Baudelaire’s beautiful phrases of shitty, gritty urban life. The poet of prostitution and flanerie pits the woman into the stink of the sewer. This life is the life of vegetation beyond the rationality of light. Tiresias became a woman long before this particular debris of Western civilization descended on women: that snake, that worm, in this particular apple is Eve’s harsh burden. The Greeks had some more space for women in their Olympus, if only marginally so. And taking my cue from the romantic mythologists, I can trace a different lineage from Tiresias’s gender change, from priest of Zeus to holy prostitute. The body at the center waited breathless: religious and sexual ecstasy have been linked for a long time, and the sweet tree sap echoes other lickings, orgies, feasts where apples and flesh are eaten. Travel and holy prostitution have surprising links, too, for according to Greek historian Herodotus, in Babylon, women were

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Figure 21 Tiresias photo series. Performer: Petra Kuppers (Photographer: Lisa Steichmann)

supposed to trek to a specific temple each year, to have sex with a foreigner, to show the land’s hospitality. It’s easy to see why straight boy mythologists who hardly ever seem to be of middle-Eastern descent might get so excited about it all. What did Tiresias think, engaged in her duties? I cannot know. But maybe she thought of the hieros gamos, the holy wedding: the union of god and human, intercourse across species and bodily shapes, so common throughout Greek mythology, and well remembered from her Priesthood days. When she slew those copulating snakes, that little bit of life energy, the roasting on the hot stone translated into sensual twining, maybe she felt a need to keep those coils, that spark, that rush alive? Maybe. But Greece was also the place that gave the world another name linked with prostitution: porne is the Greek word for prostitute, derived from the verb ‘to sell’ – a commerce term, and maybe Tiresias just saw the entrepreneurial advantages of a job that allowed her to circulate amongst the voting, deciding men, and assert her influence,

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a quality that stuck to her/him throughout the Greek dramas. At the heart of holy prostitution is an understanding of female sexuality as a place of connection, redemption and flow. That’s not too far from the capitalist wet dream of money, either, and whatever hippie vibes I carry in my heart and hips, I am not convinced that this Tiresian image is so much more empowering to me personally than the cocky priest of Zeus. But it makes for a change, at least.

VIII Tiresias is walking in the woods, again. Her evening walk, with her staff thumping a different rhythm from the one she can never decide about: is she weary of its repetition, or does she find comfort, solace, excitement in the endless performance of the coil, feeding an ongoing fire of creation, nourishing the gods with her acts? The sun is low in her eyes, and the perfume of wild rosemary fills her nostrils. That blinding sun: to look at it, she feels the dryness of her eye, and the discomfort of the everyday life of her aging body, the creak in her shoulders as they lift the heavy staff, and the chaffing of her sweating breasts against the linen binds. And yet, she also knows the sun as divine, that light as a source of knowledge, an illumination beyond the night. Stepping on her path, she contemplates the paradox of meaning and experience in her own bones. And it is thus slowly, turned inward, that she comes upon them: two snakes, their bodies rolling over each other in a mating dance. Tiresias stands aside, and looks down upon the serpents whose tooth could fell her. No muscle twitches in her body, her dry hand leans firmly on her staff, planted like a young tree. She only dimly remembers that day seven years ago, but she lets her fingers glide down her staff, feel the smooth patches where she took a scrape to the wood, to eradicate the stain of her slaughter. She is not sure if it is compassion she feels, or weariness, but she turns on her sandals, unafraid to expose her Achilles heels to the distracted snakes. She’s been exposed before, many times, often with pleasure, and there is neither shame nor risk in her as she accepts the wheels of time and their interlocking spokes. And as she steps away, she feels again those pulls, those pushes, glands in quickened change.

IX My Tiresian journeys have brought me to England. Here, Pan, Puck, the Green Man, the bountiful lady, Maria, Hecate, all those figures seem to

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have such rich currency: I find them in book stores, libraries, pub names, decorations on houses. Their names do not flatten out in the same way I think they do on other soils: somehow, they still remain complex cups of meaning, mixing and merging myths and songs. Behind the Green Man mask in the tourist shop, I see the leer, the leafy shadow of hunt and pursuit in the forest, and remember hieros gamos, goat rites, ancient circles. In the tiny ancient village of Pytchney I go for a walk, leaning on my cane, as I am waiting to meet a fellow scholar and writer, a blind man, to talk to him about Tiresias, who will become blind as her journey continues. Around me, in the village, I see signs of other ways of seeing the world: sixteenth-century thatched homes with witches’ crosses inset (reminder of violence, not just twee nostalgia). I walk around their church, nothing special to the locals, a twelfth-century building. I find legible gravestones from 1755, and older ones that are too hard to decipher. And above the entries, at the downspouts, hang little stone bundles, easily disregarded, the same color and texture as the rest of the old gray church. But these are gargoyles, demon creatures, often half-man/half-woman, harking back to pagan times. Their naked asses, giant penises and stylized vulvas are all over the hidden corners of European churches. Here is the holy fool, the one who steps in the sanctuary. Life sprouts, here, and there is nothing virginal about it. The next day’s journey brings me to Ely, and one of the most imposing cathedrals in England, site of a Christian religious community since 674 – and who knows what was worshipped there before. I think of Tiresias again, as I stand in the newly restored Lady Chapel off to the side from the main Cathedral. It is the largest Lady Chapel in England, and around me stretches a light open space, with old stone floors, and full of grave markers in bronze. High up in the ceiling, where the roof bosses meet in their graceful arches, the Green Man stares down at me, fulfilling similar mysterious functions as the gargoyles: a strange pagan presence in the Anglican space. Many legends attach to the Green Man – and one of them has him planting Yggdrasil, the giant Ash tree of Norse mythology. Like the roof trusses, connecting points reach out from everywhere to everywhere else on my Tiresian travels: everything touches in the river of words. But in that Lady Chapel, rearing over it all, all by herself, without curlicues or sandstone supports, is a very strange Mary. She is an artwork created in 2000 by sculptor David Wynne, and there’s a lot of controversy surrounding her, gossip both locally and nationally. For she looks like a real woman, flowing hair, pretty wild expression on her face (whatever she’s on, I am having some), and her arms are reaching up – in ecstatic dance, some sort of

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annunciation, no doubt. It is a rather unusual piece of work to have in a ‘working’ church. Many people think it is gaudy – but it just throws into relief the gaudiness of all of the church paraphernalia, no matter how old. It looks very contemporary (in fact, annoyed British worshippers have compared her shape and appearance to Charlie Dimmock, a prime-time TV gardener goddess – making out of the Virgin Mary a Green Woman). Praying to the Virgin Mary, strange to me in any circumstances, seems particularly unusual in this case. And yet, here she is, in one of the most important cathedrals in the United Kingdom, a huge ship sailing over the fen plains. Her arms are upraised in a place at which worship happened for well over 1000 years – no matter what I personally make of Christianity, the place is alive with some energy, some lines, some pulls. I turn around myself, my cane tapping the bronze and stone beneath, and I think of the thoughts that help me chart my journey. The hairs at the back of my neck stand up. The world shifts on its axis as I feel the ley lines drawing out from here: the Green Man, Mary, Tiresias, Greek Gods, Celtic Fertility Dances, Christian Rites of Eve Eating Apples and All Eating the Flesh that is the Word that is the Life: words pull and connect, unveil connections and bind them to my flesh, standing on the stone floor of a Cathedral, where flesh was both mortified and celebrated. Shapeshift.

X In the Tiresias dancevideo, unusual dancerly bodies roll and twist into one another in the suspension of a dark video frame. Overhead camera work dislocated the scene’s orientation. A yellow manual wheelchair appears centrally in many shots. Different people sit in it, turn it in a slow circle. Muscles and steel shift against one another. Here be dragons: here are strange rites, people engaged in silent communication, shooting snarky gazes at the camera while they turn in display. These bodies are shrouded, even though their white and black skins gleam in the light. At the end of the video, the empty wheelchair is pulled out of the frame, and two performers draw red silk across each other as the last words of the poem stands alone on the screen: ‘choose to nourish.’

XI I am back in my car, in the desert near Tucson and my writers’ residency home, the Casa Libre en la Solana. I have stopped, my air conditioning as low as I can keep it without fainting in this heat. I would love

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to move, to roam among these hills, but I know I cannot: my aching bones will not allow me to crest that hill, and the sun will turn my head long before I can hope to reach the crest, anyway. Snake hills are not human shaped. The Hopi know shapeshifters, too, evil witches, ghost powder, the stuff of Tony Hillerman novels. Where the shapeshifters dance, you cannot walk. But the heat of the desert brings me different memories, of Australia, Arnhem Land, and another snake: the Rainbow Snake, a dreamtime creature that sang the land we move across, that dreamt it into existence. The Rainbow Snake is made up of many different animals, a hybrid fertile creature that can both heal and kill. It is the creator of humans, but also swallows them, vomiting them back up as the bare red rocks of the Australian Outback. This desert land is closed to me. But words are not, and the land lives on in words, the snake connects the lived experience of walking in the forest, finding the Yggdrasil, meeting the copulating snakes, to these words, on this page, these words for you, Reader. Words bring us into

Figure 22 Tiresias photo series. Performer: Autumn Dann (Photographer Lisa Steichmann)

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the compass of experience: that is what a crip who cannot scale the hill can take from a poetics of the world, stepping with other feet.

XII Tiresias was blinded for his step beyond the words and bodies of male and female. Zeus got angry, Hera got angry, lover’s tiff: who has more fun in bed, men or women? That was one fight Hera did not want to lose: for her, the one secret women have is that they have more fun, more orgasms, than guys, and can keep quiet about it. But Zeus leaned on his old hand, Tiresias, the only person who truly could make a comparison between the pleasures. And priesthood isn’t easily driven out of people: Tiresias bowed to higher pressure, and ’fessed up. The girls have it. Hera screamed, and blinded him for his treachery. Zeus felt bad, a bit, and though he could not undo his wife’s spell, he tried to balance things out, and gave Tiresias second sight. So now Tiresias knows the future. But he’s a cunning guy, ornery, snarky, not much beholden to bonds of sexual favor, political liaison, or friendship: he’s seen it all, seen it all go to hell, keeps his own council, and thus he speaks with an oracular tongue. No straight answers here, but poetry’s pull hither and thither, shapeshifting in one’s mouth.

XIII Language becomes sinuous in my travels, thoughts, the path through this chapter. My journey started in an interest in snakes, serpents, dragons: creatures that breathe fire. For fire, the Greek sun, the Arizona heat, blinds my exploration of Tiresias’s steps, her erotics that touch words to bodies. Two snakes: their bodies intertwined, boundaries undecided, the hermaphroditic oracle that lives in different skins, glands, shapes. A figure shimmers at the tree. This is the Ouroboros, the snake swallowing its own tail, an alchemic symbol of rebirth, transformation, and circularity. Jung talked about the Ouroboros as the archetype of integration, the shadow incorporated. And this circle wheel is the site of the oracle, where the veils of language open in unfamiliar, ever new ways, unconcealing itself, only to fall back into the density of undecidable bodies, shimmering unclear words. Tiresias steps out into the mountains of Greece, her staff falling next to his feet in terrain where I cannot walk. But the fire words blow over me and excite my curiosity, and new words and worlds emerge, touch, break, undo, and knit. From my research journeys to the transformations of photographic

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Figure 23 Tiresias photo series. Performer: Neil Marcus (Photographer: Lisa Steichmann)

alchemy and the flowing video image, I arrive in a circle of friends and co-performers, and bodies touch mine. Tiresias stands at the place where the eros of words, their twining, sensual ways come to the hieros gamos: the holy intercourse of words, cross-species breeding, gods and humans, words and their trafficking, vitality, loss and fertility, nourishment on all our tongues.

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7.2 TEACHING DISABILITY CULTURE: TIRESIAS IN THE CLASSROOM I opened my eyes to find him watching me. The sun had just begun to struggle through the bare branches of the trees and I asked him what he was doing awake. He had been so still and so silent; I had thought for sure he had finally drifted off. He said that he loved watching my sleep. He said that the way the sun fell on my face made me look so beautiful. I smiled; I didn’t want to tell him that I hadn’t been sleeping. That I’d lain next to him the whole night wide awake and trying not to move or even breathe, for fear that I would shatter the moment, the magic, the sheer wonderment of the whole situation. There was a boy in my bed! A boy with his arm slung over my hips like it belonged there. I was hyperaware of his everything. The way his heartbeat sounded in the stillness, the heat that radiated from his body, the slight movement of his thumb sliding over my hipbone, the weight of his legs tangled up with mine, the whispered, steady, slow sound of his breathing and somewhere behind all that, was the feeling of being watched, of being wanted, of being beautiful. (Melissa Sartori, CIL worker and community participant, Tiresias, February 2008) Sexual awakenings, the tenderness and violences of vulnerability, the roles we play and the moments when life changes: these were the themes of Tiresias, the community performance. And in one moment, all silent, we listened to this story in our round, and smiled at one another. A project about disability and sexuality can move us all to remember our personal beauty. In winter term 2008, I taught an undergraduate course on Disability Culture at the University of Michigan, and in the course, we collaborated with the Center for Independent Living in Ann Arbor (CIL). For the Disability Culture class, I had received funding from the Ginsberg Center, a University of Michigan service-learning organization. The application focused on a show about disability, sensuality, and sexuality where students would be working as equals with community members. With this money, I was able to pay all community members a small amount for every workshop they participated in, as well as all travel expenses. I was also able to bring in a number of professional disabled artists as guests to work with students and community members. In the class, after initial weeks of working through a number of writings on disability culture, the students and I moved our classroom to

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the CIL, for five weeks. We all had to trek down to the Industrial Estate on the edge of town. The Ann Arbor CIL had recently outgrown its previous space. The transition was not an easy one, as promised public transport routes were slow in coming on stream, and the students experienced the difficulties of moving through urban space not designed for pedestrians. Moving our bodies through space, preparing our bodyminds for new environments: students experienced many disability cultural issues through the difficulties of this project. Then, we performed together, and we had to keep transport issues firmly in our mind as we were rehearsing and performing, with accessible taxis and vans arriving sometimes punctually, but always ready to depart immediately. In the last weeks of our course, we reflected together on our experiences. I got quite ill during the production process, and I have felt, as I have done for a while, that my days of organizing and producing complex community performances with multiple communities (local activists/ users of the CIL, university students, professional artists), all with different agendas and needs, are coming to an end. There is too much haste in these processes, and I prefer the much slower pace and the time and space for engagement that long-term projects offer to all participants, including myself.11 But I also know, from speaking with many participants afterwards, how important the Tiresias community performance was to them, how it affirmed them as artists, honored their labor, how it allowed them to speak up about issues that corrode their lives, how epiphany and transformation awaited them in the private spaces alongside the public process, how the labor sharing between a community organization and a large university might be experienced as a collaboration rather than ‘get in, get data, get out’ process. The presence of outside witnesses, art professionals from outside the Ann Arbor area, as short as it was, also added a sense of importance and networking to the proceedings, similar to the ally witnesses in the Aotearoa asylum ceremony. Disability culture work is so often marginalized, local, only witnessed by friends and family. There is political capital in calling wider connections into being, and those gains outweigh the administrative hassles.

Community performance, pedagogy challenges Instead of following the trajectory to get into detail of what we did and how, and how much fun it was, and how valuable, I will stop here and share the uncomfortable thoughts I have about how to place community performance in a university setting, and in particular in the teaching encounter.

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There is always too little time to really reflect on the roles we play, and that we expect to play. There are certain expectations of teaching, art, and community engagement. We spent a lot of time addressing these in the first weeks of the course. I tell students quite clearly that I will not ‘teach’ them how to run community workshops, or a particular set of texts that would allow them to grasp the concept of ‘disability culture.’ I would hold open for them a relatively safe space in which they could experiment and think, feel and move through the issues the course presented. I could not tell them what the outcomes would be: the path of the course is determined in collaboration, which requires all parties to take responsibility for the path. I also tell them that our aim in the course is not to create a beautiful piece of art: great poetry, fantastic music, and successful theatre. I am interested in showing them and exploring with them how art forms groan under the pressure they can be put under, when conventional social relations, class, ability, race imaginations, and gender norms are pressed. What we were setting out to do was NOT helping people. This is a problematic issue, given how much service learning emphasizes teaching. Our purpose as I set it was to grow together, to learn something about ourselves, to use each other as teachers, as peers, and to find compassion, for ourselves and others. This course is designed to create self-reflexive practitioners, critics, thinkers, and doers who respect different kind of knowledges: their bodies, their emotions, and their minds. This course, like all of my courses, failed at these objectives, failed in a way. Here are the disconnects between what I always hope the course would do and what some students perceive. Of course, in each course, there are students who understand the critical and discombobulating nature of our undertaking, and are ok with it. Others come to that realization later, sometimes years after a course. But some are angry with the course. There’s a lot of discomfort everywhere, a lot of challenge, both critically/conceptually, but also physically: we do strange stuff (like dancing), and we find out how hard it is to negotiate Ann Arbor’s outer edges with buses, and in the snow. We experience and work with people who can be angry, who feel and are excluded. 1.

Students and community members suggested that we rehearse more: there is an expectation of smoothness, of getting it right. There is some idea of what good theatre should be. But we cannot

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work like that. Community members are under no pressure to turn up for all rehearsals, or for the show. They have a lot of stuff going on in their lives, and so do students who can’t just step out of their class and community schedules. We record some material from earlier workshops, so that people who cannot be with us physically can have presence (and indeed, in the final show, one of the community participants was ill, and we used a video projection of her to share her powerful story). Some participants see that there is power in the excitement of the one-off, the improv, in being in the moment rather than being safe. We have interesting discussions about that. But even at the course’s end, some students and community members ask for more rehearsals. It is hard to change the shape and expectations of existing art practices. Students want to document the show in multiple ways, and put it all up on the web, and somehow get more audiences. Again, some know that the process is the product here, not the often confessional performance numbers that students and community participants co-produce, and that easily can become voyeuristic set-pieces when viewed from the outside, easily stereotyped moments of cultural contact. One man spoke about sexual violence in prisons, and how he feels like an outsider now, in liberty, because of what he has seen, and what rules he knew how to live by. Another man spoke about the delight of seeing his child swing in a playground, the deep upswell of love he felt, his breathlessness as he witnessed the child as a consequence of his sexuality. To share those stories outside the circle we had established would be problematic, might invade people’s privacy, and sets up complex issues of permission and exploitation. In our final sharing circle, we did work with the energies these stories release. And so, after the ex-inmate shared his prison story, he offered his arm to a student for a dance, both of them dressed to the nines. Here was an older white man with white hair, speaking of shanks and blood and prison bitches, and the care he felt and enacted for another person in prison who needed pain meds and was abused. And here was a young white woman, dressed in pink satin, who gladly took his hand. They danced a waltz, channeling the energy in the room, releasing it into coils of music and circles. After a few seconds, the two broke off and found new partners in the audience circle, until everybody in the room was waltzing, on their feet, with their wheelchairs, swaying on their static chairs, or

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holding onto one another. On and on it went, circling, corralling, and transforming the energy released by the story. No documentation of the stories could possibly capture the communal holding of breath at the mentioning of the shank, at the explosion of violence in the narrative, and then this conversion of tension into communal dance. In the community were a few recovering addicts. The genre of 12-step confession exerts a strong force on all US community performances I have facilitated or witnessed. This recognizable and familiar genre is very good for its purpose, ritual structure and cathartic release (‘Hello, my name is … and I am ….’), but for art practices, it can structure self-revelation and confessional narrative in ways that do not chime with Olimpias aims.12 I enjoy disrupting these genres, engaging in fractured storytelling that veils more than it lays open, that hews a bit closer to the bone, that questions the ‘I’ that owns those words of confession. But am I a teacher, an artist/director, or a facilitator when I offer alternative options to participants, other ways of sharing? What are the edges of, on the one hand, opening opportunities for expression and, on the other, sharpening artistic and critical thoughts about storytelling? Students want more guidance, or at least a better sense of how grades come together. There was some comparing, and grumbling. I gave a student a good grade who hardly ever presented written work in any of his classes, but who stepped up and not only created a skillful hip-hop performance for the show, but also for one of the classes afterwards, reflecting in a rap about our experiences. I also give good grades to tricksters, sometimes quite annoying cynical people who defy what’s going on. These transgressions against the codes of expected English class grading are hard for some of my students to understand. I try to get students to reflect on what they have just witnessed and participated in, and make connections between the CIL experience and grade systems. They saw and heard that some people can try and try and try and fail. They drop out of the system; they are beaten without rhyme or reason. My lesson is not that life is unfair: my lesson tries to be that heartfulness and presence will find their reward in my classroom as much as analytic thought and writing skills will. We need to dream the world we want to live in: we can’t just critique the status quo. This is an activist pedagogy, informed by bell hooks’s pedagogy of love, this is work towards a world we can all live in.

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This is a classroom of (some) discomfort. There is no celebration of doing good, of righting the world’s wrongs, of being good citizens. This is a classroom where at best, a student questions the value of his education, her morals, hir vision of the world, her understanding of beauty and love. Those destabilizing mechanisms are at the heart of the projects. And those uncomfortable encounters make this worthwhile for me. Failure is success for me: it can show that we open up safety and challenge ourselves. There is no way that we can truly grapple with the exclusions, pain and reality of oppression in a 15-week class. And the effect of these emotions will infiltrate, however celebratory we approach our short collaboration. My aim cannot be to create closure, but to lay the seeds that will, most likely, flower later, and might become an important part of a student’s life and educational path, beyond the details of academic scrabbling. And in these classes, we waltz, and we break bread together, and sing and rap the poetry of cultures some of us hear about for the first time, and some of us cry, and we all dance. The poets and dancers in the project come together with hope, and with a need to be heard and witnessed. We all step into the process together, again and again, and I love the depth and the feelings that I am privileged to experience. To end this chapter on our community performance, the word goes to one of the performers, a community participant and CIL user who has been a supporter of Olimpias work through many different events, workshops, and performances, and who wrote and performed a monologue during our show which ends like this: I long/search/envision/hope/ for a future that embraces the entire spectrum of human nature/ participation as a glorious symphony of many harmonious voices, sounds, textures, and sizes. I want a world where all people feel their unique beauty inside along with the knowledge that each voice flutters as butterfly’s wings against the wind currents …. One voice matters and sets the stage for infinite beauty. Meanwhile I search for beauty in my life. Perhaps it’s in the concept of beauty that beauty can best express the delight found in opening people’s attitudes to reveal awareness and understanding towards all kinds of diversity. I look forward to the day when l instinctively

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know another has genuine beauty because they realize the joy difference has to offer. They understand that people are valuable and unique each one, and have much to offer humanity. The common good is greatly expanded/enhanced when we are all validated as equals, and celebrated for our inner beauty. Carolyn Earle, community participant, Tiresias, February 2009

Figure 24 Tiresias photo series: Performers Kristina Yates, Neil Marcus, Adam (the late Paul Cotton), Autumn Dann (Photographer Lisa Steichmann)

Epilogue: The Poeti(x) of Disability Activism

Within this syntax, in this order of discourse, woman, even though she is hidden, manages to make ‘sense’ – sensation? – manages to create content. Luce Irigaray We must invent a name for those ‘critical’ inventions which belong to literature while deforming its limits. Jacques Derrida While sitting on a street, on a traffic island, during the protest actions against social welfare cuts in Berkeley, California, in 2010, I note what I feel and remember, and I try to assemble something out of exhaust gases and companionship, out of my feminism/embodiment/poetry/ performance workgroup meetings, out of my thoughts on embodied poetics, aesthetic activism, and on how to end this book. Here is my score for this epilogue, my instruction to myself: how can I link the experience of feminist protest, of street activism as well as strategic essentialism, to a complex understanding of efficacy, and to the history of women’s, and disabled people’s, public protests? How can I perform a multiplicity of self, a rhizomatic model, an embodied poetics, within a generous exhortation, a culture-ing, a song of my foremothers, forelovers, the poets and thinkers who worked in similar ways? How can I use their patterns without appropriation, but without ‘straight’ citational reference, either, how can I affiliate, approximate, lean towards them? I name this an essay in the DIY mode: a performative poetic exercise that revisits older poetic and activist forms, but does so as a 233

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reassembly and reclamation, a constellation that articulates past and present towards a future. Do it yourself, Y: yourself, why, why yourself, what is at stake in this letter, the Y-chromosome of the male zygote, the DIY that brings up images of suburban dads in shopping malls checking out power tools? So this poetry essay, this epilogue, is a machine, it is an assemblage that does something, DIY, but with an addition, an excess: (just insert here) a little line that queers the Y into a slight side-sprawl. DIX, dixit: ‘(someone) said it.’ What is it that says something through this ‘you,’ this coalition of thoughts, emotions, subconscious and conscious desires, this energetic bundle that constellates into subjecthood and self-reflexive intelligence? Who speaks? D-I-Y saying it, saying it yourself (again), for again, you are a subject, you are the subject, you are subject. Subject to our history, we are making a home. DIY(x): As a feminist disability activist, writer and artist, I move in the realm of interdependence, not independence; collective creativity, not single genius; genealogy rather than history. I speak and live through organs that are two, and multiple. I move with a glide, my hand on my wheelchair. Feel the wheel run through the palm, the smoothness of the hand control, the continuity of touch, the contiguity of self and machine. This essay in the poetic mode swallows up the singularity of an ‘I,’ ‘saying.’ The Y of DIY is suspect: always already generic, already swallowed whole into any attempt at self-narration. Yourself is yourself is yourself. Do you recognize the form? You might have accessed the smell of a rose in your memory banks, right now. Enjoy the smell. See the color. The Steinian stone in the shoe of the Sunday morning shopping spree in the mall, this stone hinders an easy transformation of my home into something that resembles even more my idea of ‘my home.’ ‘DIY is DIY is DIY’ arrests at the site of the poet whose living room became a salon: a dramatic place of poetic mobility, of exploratory DIY culture, of assembling the voices that herald new subject positions, new desires. Gertrude is also the name of my paternal grandmother, something I always remember when Gertrude Stein appears in my memory: DIY(x) is a guerrilla genealogy, an embodied poetics, making kinship where we can, inside and out of the state’s boundary. As I am keeping the Y in its slightly unbalanced sideways slide, on its crutch; as I move into my own dixit without full ownership, I call upon foremothers. Dea ex machina. ‘I’ can DIY(x) a stellar chart of adventuresses who call cultures into being.

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This I, now leaning into itself, or into each other, in an X, this multiplied I now borders into her own generosity. What is appropriation, what is gifting? This is an I, crossed; an I, echoed; an I in the mode of ‘and,’ and hence already leaning into the voices of the past. Much material here is reworked, substituted, reconstituted, and reshaped from other sources, including various alchemical texts, and, in particular, Tender Buttons by Gertrude Stein, and material from Gloria Anzaldúa and Luce Irigaray. I call into a lineage, constellated community.

Deformation: DIY(x) the stone Activists, my body is on the line. This is a work of substitution; a prosodic form fills out under new pressure. The sewing machine, the wheelchair: the machines of identity are at work on old poems. DIY yourself new clothes, empress, new subject positions, new ways of feeling scar tissue. The wheel is moved forward and back forward, forward and back again, that is the particular direction that is imparted in pressure waves pushes no curve in sight. Spokes, metal spokes, spokes quite monstrous ordinarily, aligned to cascade into a point a dragon’s red tooth The tensile steel is not necessary. The plastic will do as long as there is equal pressure and no flex there is no place that needs to bulge out to the side and veer inward. What is the impetus that makes machinery that makes it thwack. What is the impetus of the endless rolling line and the necessary scar

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in the palm. What is the impetus. What is red freedom what is it where is the languid length it is there and a dark place is not an open place only to walk away to come back when wanted only perch with tense thighs a perch that is water the muscle has no color. A line distinguishes it In the newspaper, below the fold, A line break, just distinguish it Folds, lines, breaks, transformation: the DIY(x) of the zygote, expressive C4, T4. TCCGTTGCATTGCA

Reform/nation T4: the name of the euthanasia program run by the German Nazis, based on what they called ‘the American Science.’ The name is derived from the street name Tiergarten (animal garden). The Nazis used poisonous gas to kill over 200,000 disabled and ill people, perfecting a regime of gas chambers that would later be used in the extermination of Jews, Roma and Sinti, gay people, and others. In the deformation of the nation, what are the boundaries of the citizen machine? Who calls whom ‘citizen,’ and collects earth, called ‘home,’ on (in/non-) human remains? Who can lead a ritual of reclamation, and remediate the past? DIY(x): a national do-over, a mythological reinvention, lines drawn in the sand. Again and again, we find ourselves in the border country: what are the ethics of engagement, between autonomy and citizenship? DIY(x) comes up against the membrane of the other.

Form/ation Communal do-over, under the shadow of the ultra-man, Arnold Schwarzenegger: here is the site of DIY with a ‘Y’ writ large, testosterone washed away in the tax debacle of Californian dismantling of social institutions.

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Arnieville was an activist camp and tent village of a coalition of disabled, poor, and homeless people, on a traffic island in a busy street in Berkeley, California, during May, June, and July of 2010, set up by organizations like Disabled People Outside and CUIDO (Communities United in Defense of Olmstead). People slept in tents three feet away from roaring traffic, fast wheels and exhaust fumes. Activists used their physical presence in these precarious and polluted surroundings, their art, song and a large papier-mâché puppet of Arnold Schwarzenegger, complete with raised hatchet, to protest the ongoing dismantling of the social welfare system. Cuts kill, taxes save lives. DIY(x): what are your Desert Island songs? I remember: the poetics of street action played across my body, as we sat in our wheelchairs, scooters, and loungers, huddled together to sun ourselves or shiver in the treacherous Northern California spring and early summer, my senses alert to the infiltrations of temperature change, of migraines held barely at bay with ever higher doses of pain killers, of the cramp setting into joints. There was also the smell of comfort offered by the warm food neighbors brought by each day, and the settling in each day for the sharing circle, to hear and bear the different voices, different cognitive frames. The bearing was not always easy: there were tears, and shouts, and accusations, arguments, ravings, these genres’ boundaries often interwoven and undecidable. I remember feeling a part of this community, and apart, and I still feel the complexities of ethically witnessing and writing about a moment of disability culture that even at the time felt like it was destined to achieve mythical status as the longest-running protest by disabled people in the United States. I also remember the renewed pleasures of the possibility, the precariousness of home when I did wheel home on many days, leaving others behind, to connect myself differently, to plug into the electrical web and charge my wheelchair, fire up the computer, send images of Arnieville to Facebook and discuss its politics and my experiences with activists in Australia and elsewhere. Months later, Neil Marcus and I wheeled up to the tent embassy in Canberra, Australia, where Aboriginal activists mark their presence, their guardianship over the land, and their demand of land rights through a continued protest, living on the brick-and-stone parliament’s garden grounds, intermittently since 1972, continuously since 1992. We all sat companionably, Neil and I listened, and then spoke a bit of our experiences being part of Arnieville, the intentions of the organizers and their labor, the people who took part, our elders and the history

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of the movement, and we all took time together and smiled. Hanging out. Our bodies, ourselves, on the line, smudging the line, breathing together, in process. I remember my disrupted, poisoned sleep in one of Arnieville’s tents, the concentration of traffic fumes peaking in the morning commute, my light-headed writing in the gray light of early morning hours. Your teeth stand row upon row like a shark’s maw no longer hens, ewes, no longer lionesses. Initiate, I greet you. Claim back the beloved’s bodies, for ourselves. We stand, and sit, and lie down my hand resting on your foot your hand in mine head on shoulder we reach out: in the circle of the activist camp circular dignity homeless homemaker circular freedom of care representation and power dust upon your brow, beloved, fight in the circle of the activist camp my arms, to arms, through the fire Documentaries about maquiladoras factories on the silver screen cross solidarity from far away Who can speak for her which women find voice in our market place? our greasy stories connect wagon upon wagon unknown goods push by on bucking trains circle the earth, one meadow at a time. Mothers, lovers, where do we sit and stand together? (brother) Ashes Ashes We all fall down.

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Breathe, and read, read on, and read the material out loud. There is no need to be an expert. The German words below are old, a Catholic gospel song, a call for protection. Feel the effort and shapes your mouth and throat make as you articulate syllables that might be unfamiliar to you. DIY(x): make these words yours, find your rhythm, and write on, sound on, move on. Use this writing as a gift, as a platform, as an impetus or a score. You may want to add your own prayer memory, your own ritual, and hence enlarge the store of prosodic magic that can anchor specificity in the world. DIY(x): sending vibrations into the world, finding resonance, offering solidarity. Maria breit den Mantel aus Maria spread your mantle wide Mach Schirm und Schild fur uns daraus Make screen and shield of it for us Lass uns darunter sicher stehn Let us stand safe beneath it Bis alle Sturm vorubergehn Till all storms have passed Gracias Madre Transformation: DIY(x) exotics, romance, historic chick lit. Sun water mercury acid sulfur iron oxygen copper you built yourself a circle home in the desert, from grains of sand, you’ve hidden yourself. I walk through the desert wailing, I walk to call for you there’s camels and carpets, and silk and bells, but then they vanish, and the street is baked hard and red clay. I still call for you in the desert. It is time to change our location. Let us leave this trap. and i and my body rise/ with the dusky beasts/ with eve and her brother/ to gasp in/ the unsubstantial air/ and evenly begin the long/ slide out of paradise/ all life is life./ all clay is kin and kin. Lucille Clifton DIY(x): clay kin, with elemental impurities and chemical membrane shuttling convoys that infiltrate mitochondrial DNA. Breathe in, in and out, slowly, feel the air rushing into you. Breathe in, breathe out. Taste the air, smell its provenance. What gases flow over your tongue? Your

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aviolae lubricate with dinosaur exhalations, with French death rattles, with the smoke of German chimney stacks. DIY(x): know that the Y will always lean into others, it is built that way. Join the molecules.

Remediation: DIY(x) toward the new desiring machine Bioremedial intervention requires the trans formation of the toxic element, its ree valuation and rein sertion into the hol istic organ ism with calculated press ure, the illusion of control, the illusion of freedom of movement, authentic movement, myself, my self, grind my own axe and corn, I herewith name you

Figure 25 Summer 2010 Olimpias group photo shoot. Chun-shan (Sandie) Yi, Sadie Wilcox, Neil Marcus, Petra Kuppers, Mark Romoser, Harold Burns (Photographer: Lisa Steichmann)

Notes Introduction 1. There is a resonance here with the way that Michael Davidson opens his book Concerto for the Left Hand (2008: xiii), where he describes a community swimming pool as a place to see Disability Nation in action: a complex nation that does not necessarily see itself as such, but that is being enabled and enables social forms, laws, architectural conventions, etc. Davidson moves on to Walt Whitman’s poem about observed male bathers (Song of Myself, Section 11), and the tension between these two sites of bathing open up to a broad vista of being in or out, voyeurism and privilege, mediation and social justice. The precariously communal is a site many disability scholars visit often: disability studies scholars like Simi Linton (2006) and Rosemarie Garland Thomson (2007) have used the Society for Disability Studies dance to talk eloquently about experiences of community. But, like Davidson at the site of the bath declined through the gaze upon Whitman’s bathers, I am not sure about the utopia of a particular dance. So in my recount of the Axis dance class, I am focusing on the connects and disconnects I experience. Dances (and swimming pools) have rules and conventions, and the particular swirls that emerge in the contact between bodies and (hydraulic or other) pressures are of interest to me. 2. I am using the word ‘normate’ here in the way that Rosemarie Garland Thomson does, as a way to disarticulate normal from its positive associations, to draw attention to the values we hold in our words. She calls the ‘normate … the constructed identity of those who, by way of the bodily configurations and cultural capital they assume, can step into a position of authority and wield the power it grants them’ (1997: 8). You might be ok being called normal, but would you like being normate? ‘Normative’ holds some of these connotations, too, but ‘normate’ is less familiar, and hence holds more disruptive power. 3. In the wake of James Clifford’s and other critiques of the disinterested ethnographic observer in the 1980s, and with the development of dance studies’ attention to the specificity of training, embodiment and cultural embedment (most significantly with Susan Leigh Foster’s widely influential Reading Dancing, 1986), dance studies scholars incorporated a reflexive voice into their ethnography scholarship, acknowledging the importance of embodied experience and witnessing, for instance in the writings of Tomie Hahn on Japanese Dance in its focus on body-to-body transmission through the senses (2007), Deidre Sklar on kinesthetic empathy for anthropologists, and the problems of writing dance (1991, 2000), Cynthia Novak on contact improvisation (1990), or Barbara Sellers-Young on intercultural somatic processes (1998).

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4. Tracing the genealogy and development of disability definitions and languages is becoming an ever larger (and interesting) undertaking. For the purposes of familiarizing oneself with the field, still one of the best texts and classroom favorite is Simi Linton’s (1998) chapter on languages. For a useful overview of the many effects of disability definitions, and arguments for and against identity-based political models, see Shakespeare (2006). For a non US/UK perspective, see, for instance, Goggin and Newell (2003). 5. And there’s a history that can swing in the undertones, in the footnotes: what’s swinging here is the Woman with Juice, Cheryl Mary Wade’s calling herself out of abjection into fullness (Wade and Mulder, 1994). 6. In many of my non-US projects, people with developmental differences or learning disabilities like Down Syndrome are full participants and collaborators, but then, most of my non-US projects took place in rural environments where there was not a high level of services and differentiated (or segregated) arts environments available. In urban US contexts, the divisions between (particularly) physical disability and cognitive difference can be very pronounced, and I find it harder to draw upon a wide variety of participants in some of the locations in which I work (I did not have that problem with the Rhode Island Olimpias Projects, but it is particularly pronounced in the Berkeley context). This is a challenge for future Olimpias works. This split also exists in the literature on performance and disability, where a therapeutic perspective still dominates most writing on art, performance, or dance by people with cognitive differences/developmental impairments. For a cultural perspective, see, for instance, Perring, 2005. Most projects of this kind are led by non-disabled practitioners who can be very reflexive and thoughtful about their work and its political agenda (for material on the UK group Entelechy, see Nash, 2005, and de Wit and Swift, 1995. For a Deleuzian perspective on working with the Australian youth group Restless Dance Company, see Hickey-Moody, 2009). The tensions between existing models of performance in their relation to disability also inform important work on disability and theatre, often with a focus on the engagement between disabled actors and the normalizing regimes of theatre, see Sandahl’s body of work (1999, 2000, 2001a and b, 2002). 7. Community performance, community-based performance, applied theatre, participatory arts, engaged art, new genre public art: there are many definitions and approaches in this wide and growing field. In my own book on community performance (Kuppers, 2007d), I forgo a definition of something that invents itself continuously and locally, but I focus on three issues that I see as central to this work: that it is communally created, that it focuses on process rather than product, and that it is created as political labor. Other writers and collections in the field include Amans (2009), Cohen-Cruz (2005, 2010), Haedicke and Nellhaus (2001), Sonia Kuftinec (2003), Prentki and Preston (2008). 8. Reclaiming Olimpia (and Clara, the other main female figure in The Sandman) is at the heart of Hélène Cixous’s critique of Freud’s Uncanny essay: to take the uncanny all the way to the end might mean to destabilize the reading self’s (Freud’s) own subjectivity (1976: 533–5).

Notes 243 9. ‘Thrift-reading’ has become its own kind of method, a focus on ‘nonrepresentational thought,’ that is useful for the articulation of dance and movement in space , see for instance Lorimer, 2007, which quotes McCormack, 2004, one of the participants writing on one of the projects I am discussing in this book, Landscaping. 10. The issues of system-critique and system-building are intriguing. Shannon Jackson’s study of the social turn in performance studies, and of experimental aesthetics in a neoliberal moment, offers much to grapple with, thoughts on how careful artists need to parse concepts of oppositionality, independence, the evading of state structures in a time of the dismantling of the welfare state. How can contemporary performance work in the social arena productively engage public welfare systems and support structures for social life (2011)? 11. ‘Insider’ research is a well-recognized method, but one that has a number of complexities, in particular in regard to potential bias and projection, and to the problems of eliding self-experiences with the experiences of others. For an early account of using this method, see Zinn, 1979. 12. There are others who are tracing these disciplinary histories: Wandor (2008) for Creative Writing in a UK context includes at various points an account of Practice-As-Research, and Shannon Jackson’s Professing Performance (2004) provides a useful text on the emergence of performance studies as a discipline, and so does Jon McKenzie’s Perform or Else (2001). Peggy Phelan and Jill Lane’s collection (1997) is another important text in this context. In the United Kingdom, the PARIP network, website, and conferences constitute the most significant body of work on the institutional history of Practice-asResearch, in Australia the preferred term is practice-led research. See Barrett and Bolt (2007) and Dean and Smith (2009), for international approaches to creative arts research. In the US context, the institutionalization of practiceas-research degrees is only emerging, and James Elkins’s edition (2009) traces developments (predominantly in fine arts). 13. It is a love letter instead of a telephone book listing. While I respect the citational logic of the academy, and the way we carefully build knowledge through accretion and engagement, this book experiments with different paths of knowledge creation. My writing grounds itself in decades of reading, and at times, I wish I could import the footnotes of my previous books, and the contents of my current bookcase, to trace in detail where all these ideas were nourished. But in this text, I keep my apparatus slender, and thus try out a different voice to reach different audiences. While I still hope to propel my reader to other books, I also hope to propel my reader to just move, or breathe, or sit with herself. 14. And there is no additive model of disability + racialization at work here: an attention to the non-essential nature of disability, its movability in multiple cultural contexts that intersect with one another, is what disability studies begins to learn from postcolonial studies. 15. Sonshere Gilles identifies as non-disabled, I found out in a discussion amongst workshop participants. I had not know this: she is a relatively small woman, with highly mobile limbs, and, at those fleeting times when I had thought about it, I had projected some sort of ligament issue onto her body. Which in itself says something interesting about the appearance of

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non-disabled professional dance artists and their relationship to potentially normative forms of embodiment, as well as about my naturalizing gaze that just assumed disability in the absence of other self-definitions. Axis emerged out of movement classes led by Thais Mazur, and the company is currently led by founding company member Judith Smith, a woman with an acquired disability. Axis does not see itself as a disability culture producer, but as a physically integrated dance company. Many dancers in the company who identify as disabled have acquired disabilities. These distinctions and (at times medicalized) descriptions might seem to contravene ways of speaking within the social model of disability, which tends to de-emphasize condition labeling, but they are important amongst those most embodied of artists, dancers. At many dance gatherings internationally, the casting choices of the few professional (i.e., paying) companies like CandoCo or Axis, open to disabled dancers, are discussed in great detail. These issues also inform critics' writing: for instance, Telory Davies writing on Axis opens her discussion with an account of her bodily change, a dance injury (2008). Whether or not a company casts people who were always disabled seems to me to become an important dividing line in the field. Only a few companies are led and have choreographers that are disabled from birth; for instance, Gerda Koenig in Germany (for more on her, see Kuppers 2003 and 2006c). This leads to a number of interesting questions, just in relation to physical impairment alone: is ‘physically integrated’ as easily possible or desirable with people who, for instance, have never walked? To whom chair or crutch moves are the primary mode of locomotion? How fluently can non-disabled choreographers embrace alternative forms of locomotion as central rather than peripheral (or exotic) ways of being? And can dance critics see these forms of technical engagement with difference, is there a need to develop a literacy of aesthetic difference? These issues, how non-disabled and disabled choreographers, dancers and critics can work together, is becoming an important theme in current research work (see, for instance, Sue Cheesman and Catherine Chappell, Artistic Director of Touch Compass, 2010) 16. These ways of formulating social exclusion through multiple and historically grounded injustices allow for a more nuanced understanding of the multiplicities of discrimination, and the multiple fronts of progressive practice – for instance, cultural theorist Nancy Fraser points to systemic symbolic or cultural injustices, not only to socioeconomic ones (1997:14). She highlights the violence of misrecognition, and points towards participatory parity as the way to move forward. 17. These forms of addressing social justice are sometimes called ‘second-wave disability movement’ (but this is a contested term that to some seems to needlessly polarize activists). Writers like Chris Bell (2006), Robert McRuer (2006) and Eli Clare (1999) are moving towards these alternative imaginations of disability culture’s politics. Lennard Davis names a second-wave disability studies, as a scene of writers comfortable with difference and with questioning hard-won distinctions and formulations (in his introduction, 2006). The second wave movement question is one that aligns itself with social justice movements rather than liberatory frameworks (for a discussion of social justice and international human rights frameworks in relation to

Notes 245

18.

19.

20.

21.

disability, see Parker, 2006). In the US activist context, ‘disability justice’ was the frame given to discussions of disability at the 2010 Social Forum in Detroit, a major site for the reimagining of social engagement. Disability justice calls in the United States are often aligned with, and emerge from, the perspectives of people of color (and I am grateful to Mia Mingis, Patty Berne, and Leroy Moore, as well as members of Arnieville, for conversations about these issues). And writing this, I need to give honor to the many disabled artists who have felt the need to write and perform a history for themselves, to reverberate through time backwards and forward. An important play for many US artists was P.H.*reaks: The Hidden History of People with Disabilities. Playwright and director Victoria Lewis writes: ‘In 1993, Other Voices presented the collaboratively written play … which argued for a collective identity for persons with disabilities across time and history – an epic sweep that included court dwarfs in the seventeenth century, sideshow freaks, Franklin Delano Roosevelt, Henri Matisse, and disabled civil rights protesters from the 1930s to today’ (2005: 115, see also Lewis, 2006, for the complete play text). Lewis also explains the closeness between disability studies and disability culture: she describes how Paul Longmore’s essays ‘The Life of Randolph Bourne and the Need for a History of Disabled People’ (1985) and ‘Uncovering the Hidden History of People with Disabilities’ (1987), directly influenced the artists’ collective Other Voices, at the Mark Taper Forum in LA. This direct acknowledgment of activist agendas across scholarly and artistic endeavors fuels many disability culture works, and can be seen as one divide between disability culture material and aesthetic practices that focus on the interesting possibilities physical and other differences offer, without a specific nod to cultural development. There are many paths that can lead to disability culture, and for a different historical perspective, one that marries discourses and experiences of mendicancy to disability’s historical presence in US urban space, see Susan Schweik (2009). _ When I speak with Rodney about disability in traditional Maori cultures, on the marae (the meeting house), we are somewhat unsure about what kinds of validation are available. Disability is often linked to warrior issues, to the scars and traces of warfare. Disabled children can learn traditional dances, and through them develop self-image and pride, he tells me. Whether this translates into a disability rights movement, or should, and how this is to happen, is unclear as of yet, to both of us. Many of these histories leave traces that cannot be ignored, repurposed, flaunted, as Eli Clare points out (1999): ‘the hate that engendered certain words or has marked their history stays with us.’ Walter Benjamin gives this image of constellated writing, and offers a way of thinking that moves beyond Aufhebung, Hegel’s movement of the dialectic: here, linearity becomes intriguingly undermined as perspective and standpoint enter the site of historical knowledge. In the Arcades Project, Benjamin writes: ‘It is not that what is past casts its light on what is present, or what is present its light on what is past; rather, image is that wherein what has been comes together in a flash with the now to form a constellation’ (1999: 462–3).

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Part 1 Making a Home Chapter 1 Landscaping: Spacings 1. On new genre public art (Bach et al., 2001; Lacy, 1995; Lippard, 1997; Suderburg, 2000), on everyday practices (Benjamin, 1976; de Certeau, 1988; Lefebvre, 1971), on energetics and flow (Deleuze and Guattari, 1987; Laban, 1966). 2. In the final sharing, I sang and improvised around the lines: ‘Over time, I grew roots at the bottom of the stairs …,’ a connection between the physical habitus and the words which only became clear to me after the residency. But that’s a story, a metaphor, an image. Much of what I remember about the sound and the feeling seemed to emerge from the deep listening, a week of attention, the long haul, ‘all the way to the end’ Pauline Oliveros moves towards when she invites a contemplation of environmental sound (1984). 3. And this is the Deleuzian virtual: an opening out of what is merely possible, and a move towards a wider open, a concept gladly referenced by many collaborating artists. Collaborative improvisation practice, in particular cross-arts improv, is still critically under-represented, though. Music (and in particular jazz) holds the largest share of material out there, followed by theatre and dance, in particular in journals like Contact Quarterly, see also Ann Cooper Albright and David Gere (2003), Susan Leigh Foster (2003), Sandra Minton (1997), and Miranda Tuffnell and Chris Crickmay (2003). For a good overview over bi-media and poly-media improvisation, see Hazel Smith and Roger Dean (1997), and for a still influential account of the joy of flow in improvisation, see Mihaly Csikszentmihalyi, 1996, in particular pp. 110–13. 4. The mouthing of words, and of poetry, the elocutionary execution of fragmentation and incorporation, appears at many points in this manuscript. Again, my wish is not to investigate genealogies of these forms of thinking about poetry as oral act and as sound (in particular, song), nor about text in performance practice, but to enact, in this writing, some of the touches of words: at times, I hope my reader will try out some of these words in their mouths. For some background on the relations between performance studies and oral traditions, see a short introductory article by Della Pollock (2003), also Edwards (1999). For a wide variety of treatments, see the journal Text and Performance Quarterly.

Chapter 2 Dancing Stories about Home: Aotearoa/New Zealand 1. A few pages of the material in this chapter have been shared in various ways, and the multiplicity of sites speaks to the circulatory patterns surrounding community performance: as part of a project report on community arts on the Community Arts Network (a valuable resource in particular for US practitioners, sadly discontinued in 2010); in a report on NZ dance for Animated, the UK community dance publication; as a practice report in Environmental Communication; and, interspersed with exercises and how-to ideas, in my community performance toolbox, 2007d.

Notes 247 _ 2. Maori accounts are not ‘stories’ in the sense of fairy tales, but accounts of whakapapa, of how things, peoples, and the world came to be, a genealogy of the land. One of the Coastal Mappings collaborators, Nancy Higgins, co-authored an essay on this issue, looking at conceptions of blindness among _ Maori (Tikao et al., 2009). It is easy to see why this focus on the status of myth would be of interest to a community artist: in turn, these stories, even in their adapted and re-told form, shifting through the alienating kaleidoscope of contemporary pressures, in turn influence how we come to be enworlded as postcolonial contemporary subjects, how we perceive the world around us, and how we see ourselves. 3. The postcolonial appropriation and re-functioning of myth occurs in many ways, and with different formal results. For one intriguing discussion of genre and myth, in this case about Australian aboriginal stories leached off their territory-defining function and shaped into children’s or tourist-consumption story material, see the classical text by Stephen Muecke (1992, 42ff.). 4. For more information about the group and its aesthetic, see Mazer, 2007, part of the first full-length collection of academic research on New Zealand theatre, Performing Aotearoa. 5. This performance echoes for me with Jacqueline Shea Murphy’s discussion of the acceptance of dance as part of the evidentiary process around land rights in Canadian Supreme Court decisions, where dance emerges as more than just representation of the past, but as a physical and spiritual connection between the past and the present. She writes that ‘admitting (dance) into the halls of official memory forces a rethinking of how performance functions as historical document and suggests that performance such as dancing enacted, and continues to enact, effect on the world.’ (2007: 220), and goes on to discuss in nuance and with the voices of many Canadian Aboriginal and Native American artists how this historical connection can operate. 6. There is a lot of important work on death and mourning in performance studies (for instance, Phelan, 1997, Roach, 1996), and there are also a number of studies that speak about community work with people with HIV+/AIDS, for example, from a political perspective. Work on affect, public spheres, and community (for instance, the Public Feelings Project and its authors, such as Lauren Berlant and Ann Cvetkovich) has also opened up literacy on the subject. But the ordinariness and extraordinariness of regular cultural worker visits in hospices seem more rarely addressed: this is not about trauma, or ‘having to work it through,’ but about the non-traumatic nature of this work, the flow rather than the rupture. 7. Structures of feeling, and the particular alignments of emotion in individual and communal lives have become resonant for some writers, though, and offer a different way of thinking about public feeling than affect theory. For examples in performance studies, see Dolan (2005: 65f.), Muñoz (2009: 41f.), or Román (2005). 8. Truby King was a health reformer, director of the Seacliff Lunatic Asylum from 1889 and lecturer in mental diseases at the nearby University of Otago. He is widely known as the founder of the Plunket Society, which advocated scientific nutrition for babies, a well-developed network of nurses, and had

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a eugenic focus on the betterment and sustainment of the race. His directorship of Seacliff is often characterized by a connection between the patients and nature. People incarcerated at the asylum worked in the grounds – labor outdoors being seen as a therapeutic good (and also as a cheap way of getting work done, in particular in the labor shortages during the war). Many accounts of what Seacliff was like come to us through Janet Frame’s autobiography and notes (for a discussion, see Henke, 2000). New Zealand Historian Michael King quotes from one of Frame’s letters in this passage about life at Seacliff: ‘… Ina … had been a music teacher. Music? Ina wets the bed and is struck for it and hauled across the floor. And the little brown-faced woman is slapped because when the door is opened she runs to get out. But we all do. They open a door and we run …’ (King, 2001: 76). 9. For an overview over_ some of these issues in relation to literary criticism, see Najita (2006). Maori time conceptions in relation to architecture (and hence, specifically useful to choreography) are the theme of McKay and Walmsley (2003).

Chapter 3 Community Arts and Practices: Improvising Being-Together 1. In ‘history from below’ framings and the ethical performance studies tradition associated with Dwight Conquergood (1989, 1991), I need to be clear and transparent about how power and capital flowed around the project. This work was initially funded by a MIND Millennium Award, a fund that allowed people to create work that strengthened their communities, without a salary or artist’s fee component for the organizer. After the first year, additional funds from the University of Wales, Swansea, Adult Outreach Department, and, most significantly, from the National Endowment for Science, Technology and the Arts, allowed us to extend our work. During the project, I was a research fellow at Manchester Metropolitan University, Contemporary Arts Department, and, towards the end of our time together, I worked at Bryant University in the United States, from which I came back to visit. My academic appointments allow me to work in this open, collaborative, and research-focused manner, without the expectation of ‘peer-reviewed’ outcomes or significant venues for my art practice. It is important to stress, though, that while community arts are (relatively speaking) thriving in many countries, community artists often struggle to make a living. In the case of The Olimpias projects in Wales, the fact that I do not necessarily get paid for projects I facilitate can be an important feature of building trust and working together. In other projects, and always depending on funding structures, this issue is dealt with differently: during The Olimpias projects in Rhode Island, every participant was paid for participation in every workshop, as a recognition of their creative labor, appropriate to the way that recognition is usually bestowed in the United States. For many of these participants, The Olimpias was an important economic reality in their lives, an issue that again impacts our work in significant ways. Participants and collaborators in The Olimpias projects are aware that I am an academic, and I shared information about the ways that value and

Notes 249 recognition flow within the academy. But they also know that I do not write about projects immediately, or after only short contact, and that I carefully guard privacy and confidences. When I do write about projects, it is with permission, with the trust of the community, and usually after a long period of reflection. In the main, collaborators know me as a fellow disabled woman, with many stories and issues that I share with them but are not for publication or public consumption, just like their own. They know me as a disability culture activist, and they know that my writing is in aid of a larger political project: the validation and celebration of disability culture and community arts. 2. As a ‘white settler,’ I was well aware of the packaging of the countryside where I had made my home at that time, and of the local stories and myths that were, in all manner of shape and form, presented for quick consumption for tourists, and that fed back into the imagination of children growing up in Wales. Over time, through working as a dance and creativity tutor in hospices, community halls, elder centers, and other places where older people would open up their story reservoirs to me, I had come to appreciate the depth and range of many of these tales, which were only incompletely and in shortened form received by the mainstream marketing campaigns (see also the tensions around ‘myth’ in Chapter 2, the Aotearoa chapter). At this time, I was working as a community dance leader, and created dance or participated in community dance events with local children and adults, where the Welsh stories of fairies, giants, Arthur’s saga material, and Merlin stories were used as basis for dance themes: an effective and interesting way of socializing children and adults into their local story environment, but one that often relied on anodyne and ‘cleaned-up’ versions of the stories transmitted. 3. Art historian Miwon Kwon focuses on this aspect of community arts when she discusses the problems that face the community artist as member of a community: [T]he artist engages in an ongoing process of describing and enacting his/ her allegiance and commitment, constructing and maintaining a dual identity (as artist here, as community member/representative there), and of course, all subjects within this network are internally split or estranged as well, continuously negotiating a sense of identity and subjectivity through differential encounters with the other (2002: 136–7).

Part 2 Rhizomes/Connections Chapter 4 Towards a Rhizomatic Model of Disability 1. Deleuzoguattarian and Deleuzian thought and social activism and identity politics dance around each other frequently, but it is very hard to make these concepts grip onto concrete contemporary social relations, yet easy to see their applicability and potential. For an interesting collection of ‘applications,’ see Martin Fuglsang and Meier Sorensen (2006). ‘Identity politics’ does not function well at all within Deleuze and Guattari’s theory, with its query of boundaries and binary definitions. Instead, their

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3. 4.

5.

Notes thoughts align with the minoritarian, that is, identity within the realm of deterritorialization (always in engagement with reterritorialization). There are multiple critiques of Deleuzoguattarian perspectives, following work like Alice Jardine’s (1984). Much criticism questions what is given up in de-essentializing oppressed identities in a world where social justice eludes us. What level of (textual) freedom are we assuming among our interlocutors? And how can we address contemporary injustices derived from identity-based ways of thinking, using poststructuralist approaches? I chart some of the ways that poststructuralist thinking and lived art practice can speak to and illuminate one another around disability in my previous books. Feminist theorists like Moira Gatens and Elizabeth Grosz have written a number of studies that explore Deleuzoguattarian politics. See also Rosi Braidotti (1994). The appropriation of non-Western practices and colonialderived ethnographic material (such as the ‘nomad’ and discussions of deterritorialization) are also critiques brought to Deleuze and Guattari’s work, while acknowledging the authors’ awareness of postcolonial capitalism. For starting points, see Robert Young (1995). For an example of an essay on literary representation, see Jeffrey T. Nealon (1998). In dance studies, Deleuzian perspective have a lot of play, see, for instance, Lepecki (2006) and, in relation to practice-as-research, Vincs (2007). For a useful overview of A Thousand Plateaus and its way of working, see André Pierre Colombat (1991). Deleuze and Guattari use poetry and literary texts extensively in their productions: quotes from D. H. Lawrence about the functions of art, intensive discussions of Kafka, Proust, Artaud. For a reading of Kerouac through Deleuze, within the terms of rhizomes and deterritorialization, see Marco Abel (2002). For a reading that captures the excitement that emerges between cyberpunk literature and Deleuzian concepts, see Charles J. Stivale (1991). A wider overview of Deleuze and literature can be found in Jan Buchanan and John Marks (2000). Schizoanalysis emerged as a term in Deleuze and Guattari’s Anti-Oedipus (1972), and its meanings have been changed, added to, and queried by the two in many publications. It is not about making things easier. It makes them more complex, creates new connections, allows new webs to emerge. In the book Chaosmosis, Guattari writes that ‘Schizoanalysis rather than moving in the direction of reductionist modifications which simplify the complex, will work towards its complexification, its processual enrichment, towards the consistency of its virtual lines of bifurcation and differentiation, in short towards its ontological heterogeneity’ (1972: 61). Although it is possible to query schizoanalysis as a romanticization of the lived experience of schizophrenia and catatonia, this critique would not really respect the authors’ intentions in their engagement with the medical terms of the older psychoanalytic system. The terms are used to query contemporary production. They see individuals (rather than ‘subjects’) as aggregates of heterogeneous functions not steered by a lack (of integration, for instance), but by productive wanderings, moving between points of intensity not governed by any one narrative (such as a psychoanalytic one, like the narrative of Oedipus).

Notes 251 6. The critiques of the social model are varied and provide an exciting impetus to much theoretical labor in disability studies. Janet Price and Margrit Shildrick, for instance, critique the social model and its lack of attention to the lived experience of disability, and see the problems with taking the social model too far: ‘[i]n disability politics, and to a large extent in theory, that putative split between mind and body has been perpetuated to the extent that the body is seen simply as the focus of discriminatory practices on the part of wider society which limit the possibilities open to its owner’ (2002: 67). Susan Wendell calls for a more nuanced approach in contemporary disability studies: ‘[k]nowing more about how people experience, live with, and think about their own impairments[,] could contribute to an appreciation of disability as a valuable difference from the medical norms of body and mind’ (1996: 22). 7. Notable exceptions include the work of Larry Eigner, an Experimental Bay Area poet (for a discussion, see Michael Davidson, 2002); Aaron Williamson, a performance poet (see Davidson, 2001; Kanta Kochhar-Lindgren, 2005; and Kuppers, 2003). For a good overview of people writing on disability and poetry, and extensive bibliographies, see the Journal for Literary and Cultural Disability Studies 1:1, special issue on disability and/as poetry. 8. This chapter was also at one point a paper at a session on disability and poetry during the 2007 Modern Languages Association convention. My own work in this book plays with some of the conventions of citational practice, and so it is interesting to see what happened when my own poem, as a recombinant form of Neil’s piece, and in context of a Deleuzoguattarian frame, was fed through a different desire machine, Patrick Durgin’s essay on what he calls post-ableist aesthetics (2009). In a highly unusual citational practice (The Journal of Modern Literature not usually being a high-burg of postmodern pastiche), he paraphrases the poem (and gives no citation for Disabled Country, or reference to the Deleuzoguattarian framing of the paper): ‘The figures of contrast in Kuppers’s poetics, in particular, are given as such static ideational borderlands as to permit no irony in, for instance, her riff on Neil Marcus’s “Disabled Country,” in which lines of “disabled lilacs … mountains … nights” and “skies … sing to you/ dance a disabled world”’ (2009, 174). Durgin’s concern is with the routing out of the essential(izing), on the one hand, and the diagnosis of ableist tropics, on the other. And so, our collaborative and staggered poem’s form is swallowed into a particular meaning-making machine. I am intrigued by Durgin’s wider frame, postableist poetics and its analysis of experimental practice to highlight the construction of disability, but I am also wary of the presence of passing in this essay: the poetries he discusses tend to circulate outside identification with disability (for instance, ‘… Laura Moriarty (1952–), a poet virtually unknown to disability culture and who does not identify as disabled. … These facts are further suggestive of the notion that, where a fully-fledged post-ableist poetics is concerned, anyone will write it – a person does not have to be or to identify as disabled’ (2009: 161). I have a particular political agenda which means I tend to work on and with people who cannot or choose not to pass, some of whom, for a variety of reasons, work outside of certain delineations of the poetry scene, or to whom that scene is closed, or even the rooms where

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the scene takes place. Those different tactics in an ableist world might be why Durgin and I misunderstand each other: for instance, when he asked me at the convention to elaborate on the presence of the word ‘bi-polar’ in the poem, I understood him to ask for a public disclosure, something I approach with great carefulness: mental health difference finds expression in my writing and production in multiple ways, but not in the ownership of medical labels. As he writes in his essay, he, on the other hand, understood my deflection of his query as an irresponsible disavowal of the weight of words. In the end, though, our appreciation of experimental aesthetics tends to similar terrains, if different perspectives, and we will have to work through our locational and political differences. 9. For the full dialogic lyrical essay called ‘Disability/Performance,’ centered on Marcus’s 1995 performance piece My Sexual History, see Kuppers and Marcus (2009). 10. The video is available on YouTube: http://www.youtube.com/ watch?v=GCU1MHyRFC4. One can search for ‘disabled lilacs youtube’ and find it that way. 11. Although Barthesian theory is more closely aligned with Freudian fetishes and the stagings of absences than Deleuzoguattarian writings, this aspect of our video motivates me to remember an iconic passage by Barthes. Vocal writing, ‘carried by the grain of the voice, which is an erotic mixture of timbre and language … language lined with flesh … the articulation of the body’ (1975: 66). There is an interesting argument here about the im/possibility of escaping the mythic nature of language: lilacs, and so many of the words that make up these poem sequences, are so drenched with use, so obvious in their mythic function. How does the incursion of the bodily, in particular in the word disabled, change these histories? Do these actions mythify disability; allow it palpable distance between thing and word? Barthes writes about myth: ‘For the very end of myth is to immobilize the world: they must suggest or mimic a universal order which has fixated once and for all the hierarchy of possessions’ (1972: 55). Disabled seems to me in a different order or place of mythification than love, and to align these spheres might show the glassy, spherical nature of language’s function, expose the naturalized myth, and enter it into the ongoing chain of signification (body/word/body…) in a fully acknowledged way. There is nothing only ‘natural’ or ‘individual’ about disability, and to call it ‘myth’ is to point to that: ‘Myth is a type of speech chosen by history: it cannot possibly evolve from the “nature” of things’ (Barthes, 1972: 110). As Barthes writes, though, to break the circles of language, one ‘must drop out of language’ (1979: 233), which means leaving agency and self behind. This impossible move is, nevertheless, one that many disabled people with significant speech differences rehearse many times: the loss of agency becomes not a moment of extraordinary disjuncture from language and meaning, but a commonplace assumption that is projected onto disabled people again and again. But, as in my reclaiming of Deleuzoguattarian concepts, to understand these pernicious moves does not mean to evacuate the field. The art practices I am analyzing mount their critiques on the level of form as well as content (and articulations in between). I hope to break the naturalization of myth.

Notes 253

Chapter 5 Burning Butoh: Self/Community 1. Joe Shapiro’s No Pity shows much of that energy of coming together as a social group (2003), and the development of the field of disability studies exemplifies the draw towards finding coherence. Here, in some ways, it might be useful to go on a lengthy tour of other identity politics projects and show how members of African-American culture, queer culture, or others negotiate this focusing of energy, or use trauma approaches as an alternative to identity framings. I am choosing not to do this in this book: there are multiple sites where that kind of labor is done (although not many yet in relation to crip culture), and while I think that comparing the relative strategies would be a highly useful research task, this project instead tries to place itself within disability culture, talking about an experience of tentatively communal enworldedness: no need to relativize this right now. For me, this culture is central – and few mainstream cultures place themselves in relation to other cultures each time they map out part of their terrain. 2. Examples include anthologies of both primary and secondary material, such as Susan Crutchfield and Marcy Epstein (2000), Kimball King and Tom Fahry (2002), Riva Lehrer (2005), Vicki Lewis (2006), Carrie Sandahl and Philip Auslander (2006), James C. Wilson and Cynthia Lewiecki-Wilson (2001), Bauman, Nelson and Rose (2006), Millet (2010), Tremain (1996), an anthology by disabled dykes; and single-authored books by disability activists and theorists, such as Harlan Lane’s work on Deaf culture (1996), Stephen Brown (2001), the work by Rosemarie Garland Thomson (1997), Brenda Brueggeman’s work which discusses amongst other topics Deaf performance and poetry (1999), Kanta Kochhar-Lindgren’s work on Deaf and intercultural theatre (2005), and my own work on disability dance and performance (2003, 2007). Disability culture poetry lives in many places: in crip culture cabarets on stage, but also in a number of books and collections, for instance the by now classic Toward Solomon’s Mountain; Despite this Flesh, Vassar Miller’s edition of poetry dealing with disability, and Kenny Fries’s much-used anthology Staring Back. 3. See for instance this interview between a Butoh master and a literary critic, conducted in 1968, and reprinted in 2000 in a highly influential special issue on Butoh in TDR. Here, a specific anti-female framing is set up which is then undercut by the evasive and destabilizing poetry of Hijikata’s writings (who did work with women post-1968): Shibusawa: It’s what Haniya Yutaka has cleverly termed ‘meditation in the womb.’ Which reminds me, all the dancers in your ‘dance of darkness’ are men. Are women, then, too fleshy and round for it? Hijikata: A dancer must be able to relate to, for example, a frozen bone that transcends gender. (Hijikata 2000: 51) 4. This draw towards becoming, and becoming other, as part of a historical narrative on the emergence of Butoh, is well encapsulated by Miryam Sas in her closing remarks in her book on Japanese surrealism: This fascination, this longing for the encounter with what is the barest edge of possibility (the longing for crisis), like the longing in early

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Notes twentieth-century Japanese poetry for the encounter with ‘actuality,’ has the structure in these post-war movements of a desire performed and incorporated in the physical movements of the dance, which is its experimental trial and both can and cannot ‘grasp’ the object of its longing. (Sas, 1999: 176)

5. These places of seduction by dance and writing simultaneously fuel explorations like Erin Manning’s work with (rather than on) the tango (2007), which argues for an ethics of touch in movement. Simone Forti’s career also intertwines writing, dance, politics and emplacement (2003; and also Day and Forti, 2009). 6. Translation, approximation, alignment of concepts, cultural specificity, and transnational mobility: there is much juice in the cross-linguistic travels of dance writing, as Sally Gardner reminds us in her discussion (2010) of translating Laurence Louppe’s French writings on dance, comparing them with work on Isadora Duncan. Meanings multiply, various registers and conceptions of corporeality productively articulate with each other. 7. And Hijikata’s students take up the language too (although what exactly these words mean in Japanese – disabled/crippled/handicapped – what they signified in the original interviews, what was said, seems impossible to trace: the cripple is slippery, like the transnational history of Butoh language). Yoko Ashikawa, a student of Hijikata and founder of her own lineage, explained to Sondra Fraleigh: ‘Start with the viewpoint that you are handicapped,’ she advises in terms of dancing. [I wonder: what does this mean? Handicapped in terms of dancing? Is this the ‘handicapped’ of the horse race, or is it developmentally disabled? My monkey mind chases around, casting for different meanings.] For me this means adopting the existential attitude of ‘not knowing,’ to be open to whatever comes, or attaining what is called in Zen a ‘beginner’s mind.’ (Fraleigh, 1999: 141) 8. Disabled dancers who use Butoh-inspired forms include: Erik Ferguson and Yulia Arakelyan in Portland, Oregon; Manri Kim, director of the company Taihen in Osaka, Japan; the US Bay Area’s AXIS dance company in their 2010 collaboration with Shinichi Iova-Koga’s inkBoat; Berlin’s Theater Thikwa’s collaboration with Minako Seki and Erika Matsunami; and many more. 9. For a discussion of CandoCo’s path, see both co-founder Adam Benjamin’s handbook (2002) and Owen Smith (2005), also Ann Cooper Albright (1997) and Kuppers (2003). Smith frames CandoCo by explaining how their challenge to mainstream dance aesthetics stands in opposition to dance companies with disabled members like Green Candle and Amici, associated with the label of ‘disability dance.’ He describes how dance criticism of the group’s work picked up (from ‘warm and sharing’ to ‘edgy’) when they worked with non-disabled choreographers. It seems to me that there are more possibilities on the spectrum between ‘victim art’ (Arlene Croce’s much quoted excuse for not watching certain kinds of art), and ‘avant-garde dynamism.’ The

Notes 255 wider contemporary dance scene, off the radar of much criticism, provides space for alternatives, in Contact Improv jams, camps and festivals (see Ann Cooper Albright, 1997, Albright and Gere, 2003, Goldman, 2010); in forms of somatic work such as Ecstatic Dance, Five Rhythms and SoulMotion; Continuum, Body Mind Centering (Bainbridge-Cohen, 2008) and Authentic Movement (Pallaro, 1999, and 2007), nationally articulated at sites like the Los Angeles SomaFest and internationally coalescing in journals such as the Journal for Dance and Somatic Practices.

Part 3 Memory Touch Chapter 6 Anarcha and Felaweshipe 1. One example of this kind of contested image work is the cyborg writing by Donna Haraway, see, for instance, Wendell (2001: 45ff.), and Mitchell and Snyder (1997: 28–9, fn. 33); Kuppers (2007c: 132ff); Parker-Starbuck (2005); Sobchack (1991). Siebers takes up Haraway in his critique of ‘current body theory’ (2008: 62). He refers to his own sense of truth in order to disengage from her: ‘I know the truth about the myth of the cyborg, about how nondisabled people try to represent disability as a marvelous advantage, because I am a cyborg myself… Pain is not a friend to humanity. It is not a secret resource for political change. It is not a well of delight for the individual. Theories that encourage these interpretations are not only unrealistic about pain; they contribute to the ideology of ability, marginalizing people with disabilities and making their stories of suffering and victimization both politically impotent and difficult to believe’ (2008: 64). References to personal truth do indeed evacuate discussions of theory and politics, and I argue that pain can be a motor to aesthetic political labor, embodied and felt, shared and negotiated. In multiple ways, pain disrupts the clear boundaries of self and language, truth and embodiment, as the history of art practices by people in pain shows. Positing pain as the other to ‘theory’ is not useful, given how pervasive pain experiences are, and yet how mythologized or individuated pain is represented in multiple discourses. Artists and theorists alike have shown how productive pain thought can be. But pain, transhumanist thought and usefulness also align for me in other ways. Fiona Campbell’s study of ableism (2009) embraces a Heideggerian perspective on world and technology, and that makes for a historically grounded argument. And yet, I find it hard to enter and engage. I remember, a few years back, writing a solidly argued paper that discussed fleeting everyday war memorials at the beginning of the Iraq invasion, and using Heideggerian perspectives on work and earth in that. When I submitted it to a performance studies journal, the response I received back was electric: the reviewer was clearly deeply pained by my use of Heidegger, not on the level of argument, but by the associations with Nazi Germany, the uses to which this writing was historically able to be put. I have never forgotten the pain I read in this readers’ report, and what I learned about the emotional costs of my citational practice, how communication was forestalled here. ‘Usefulness’ is not the only arbiter worth considering when writing,

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2. 3.

4. 5.

Notes particularly in a social justice environment, in a place where we can listen to the words and concepts we use in all their historical complexity, in the use to which they’ve been put. Robbie McCauley in her performance Sally’s Rape: ‘a tightness between her thighs. When it lets go, she screams with terror’ (1994: 240) This question informs much dance scholarship: how to know what performances happened in the past, how to perform the past, how to touch bodies to bodies, these are the questions that drive editions such as Dils and Albright (2001); Foster (1995); and Franko and Richards (2000). Putting one’s body on the line is part of these investigations, too: Ann Cooper Albright’s most recent book, on Loie Fuller, uses performance means as well as historical textual analysis to approach this figure in the electric light (2007). For an extended analysis of relationships between gender and race in US literature, focused through a discussion of disability, see Garland Thomson, 1997. Given this chapter’s scope, I am not dealing with fistula issues in non-US settings, although there, issues of race, gender, and economic relations between countries are still at the heart of the matter. There are many problems with ‘development’ approaches to fistula repair, ignoring the underlying causes of fistula and instead seeing ‘repair’ as a gift sent from a (Westernized) heaven – see the tenor of stories at the International Society for Women and Development, http://www.nigerfistula.org/stories3.htm, where, as always in colonial stories, ‘women with warmth and obvious intelligence’ charm white hospital doctors. In another fistula healing environment, another doctor finds spiritual redemption, feeling here less alienated than in his normal environment: To have danced with the fistula patients is to be submerged in a unique community of caring, which is bound together by an almost indescribable knowledge of the nature of suffering. To have danced with the fistula patients is to recall why you went into medicine in the first place, and to mourn what we in the West have lost, in spite of our advanced health care, affluent economies, and technical expertise. (Wall, 2002: 1332) I wonder if the women in the West are mourning the passing of fistulas as a wide-spread health issue. Sims and Africa are linked in many ways: the Abbis Ababa fistula hospital holds in its walls some bricks from Sim’s Women’s Hospital in NYC. I insert a new note, one not part of the original Anarcha background essay, in response to another project on women’s bodies ‘ruined’ by fistula: how does Ruined (2008), Lynn Nottage’s Pulitzer-prize winning play, engage with the complexities of representing fistula, how does it deal with the contradiction of who is in the audience in most of the high-ticket price auditoria and how this rewrite of Mother Courage set in the Congo presents violence against women, and their survival? Damage, loss, and redemption are part of the currency of Ruined. I am intrigued how our Anarcha collaborative performance-making, with so many different aesthetics at the table, can productively disturb narratological conventions around trauma representation.

Notes 257 6. See, for instance, Briggs (2000: 250f.), for a discussion of the eugenicist collapse of gender and race paradigms around issues of white women’s neuralgia, ‘weakness,’ low birthing rate, and hysteria. 7. For a sustained analysis of the repertoire as an addition, subversion, insertion into the archive, see Taylor (2003). She writes in relation to performance practices in Peru that the archive can hold photos and documents, and ‘The repertoire, …, holds the tales of the survivors, their gestures, the traumatic flashbacks, repeats, and hallucinations – in short, all those acts usually thought of as ephemeral and invalid forms of knowledge and evidence (192–3) 8. Searle Harris also mentions that a statue for these women might be a possibility (1950: 27) – but on my visits in Montgomery in 2006, only Sims face, body, and name greeted me at all the sites I visited. 9. Historical references for this material include Savitt (1982: 344); and also Chamerovzow (1855: 45–8), and Boney (1967: 291). 10. Indeed, Zine Magubane goes so far as to call the wealth of material published after Gilman Sander’s much-cited 1985 analysis of Baartman a ‘genesis of a veritable theoretical industry’ (Magubane, 2001: 817). In this theoretical line, Baartman has become an icon of the struggle to identify the collaboration of racists, misogynist and postcolonial attitudes with scientific theories. Magubane sees a problem with this thinking, though: she in turn presents an analysis of Gilman’s a-historical and psychologically determinist (‘othering’) use of Baartman that reifies supposedly stable racial difference (rather than, in a more contemporary vein of race work, seeing the identification of race itself as a rhetorical strategy). 11. This visual exploration, and the various metaphors of colonialization, enlightenment, and visuality that can build upon it, is discussed in detail by Terri Kapsalis (1997). She links Sims’s practice with race-based fertility technology in contemporary society, in particular the development of Norplant as a contraceptive particularly aimed at black women. 12. The use of dildos as a help in treatment is still part of contemporary practice – but in the main, vaginismus tends to be seen today as a psychosomatic disorder, with treatment options including counseling, education, and behavioral training. 13. Sims and his practices are discussed against the background of attitudes to black health in the overview text, Byrd and Clayton (2000). 14. This statement – slaveholders raped their slaves – was furiously contested. The fact that slaves were forbidden to learn to read and write, combined with Victorian attitudes towards issues of sexuality, led to a silencing of their voices. Indeed, as late as 1978, articles appear that try to ‘debunk’ theories of rape. One article based on statistics never talks of rape. The authors instead chose to speak about the ‘common assumption that slave owners deliberately manipulated the reproductive behavior of female slaves in order to increase their stock of slaves for sale or their own use’ (Trussell and Steckel, 1978: 477). The authors create an elaborate analysis of the age of slaves at menarche and first birth, and they find that based on their data, slave women didn’t bear children that much earlier than white women. In their complex analysis they forget (conveniently) many medical and social issues, such as children dying at birth, the removal of babies from their slave

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mothers (they, for instance, look at ‘numbers of slave women dying childless’), and the highly problematic nature of ‘documentation’ and registers in the first place. Against this ‘scientific data’ stand the biographies of those slave women who did manage to survive and to write (‘virtually every known nineteenth-century female slave narrative contains a reference to, at some juncture, the ever present threat and reality of rape’ (Hine, 1989: 912). 15. See also McGregor (1998: 50ff.), and Kapsalis (1997: 39–40) on the issue of pain in these operations. 16. For other brief discussions of the painter, see Duffin and Li (1995), and Steneck (1995).

Part 4 Myth-Making Chapter 7 Eurydice and Tiresias 1. The song of Orpheus in Gluck’s opera (1762, set to female voice, mezzosoprano, by Berlioz in 1856, changing sex and register): ‘Che farò senza Euridice? Dove andrò senza il mio ben? Euridice!… Oh dio! Rispondi! lo son pure il tuo fedel!’ A different liquidity of language speaks of pain and longing. 2. These are European and white US American figures, but other cultural cycles have their own disability imaginations. Henry Louis Gates (who limps) makes a limping figure the rhythmic articulation point of The Signifying Monkey, the Yoruba trickster figure Esu. I willfully read Gates’s description of Esu as an intersected aesthetics, combining an assertion of African-American theoretical competencies with an evaluation of disability, both strategically employed in the face of Western illiteracy. ‘Esu is said to limp as he walks precisely because of his mediating function: his legs are of different lengths because he keeps one anchored in the realm of the gods while the other rests in this, our human world’ (1988: 6). I cannot find any instances where Gates gives an indication of a specific disability politics. But his trickster theoretical stance might well preclude such straightforwardness, and I imagine he'd be ok with me calling him in this way into my project. 3. This leads to an intriguing bifurcation of literary disability studies. On the one hand, researchers explore the function of literary representations of disability in narratological or formal terms (for instance, Mitchell and Snyder, 2000, and Davis, 2002), as representations that need to be read against stock elements in genre work (Garland-Thomson, 1997) or see disability as textual effect, short-circuiting textual mechanisms (for instance, Ato Quayson 2007). Other positions, on the other hand, assert the ‘real’ of disability, lived experience, and assess literary representation against social effects. What is still nascent is a literary disability studies that can merge a complex understanding of the uses and functions of disability imagery or formal traces potentially associated with disability (like Quayson’s engagement with literary autism) with an equally complex understanding of the readerly or audiencing effects of physical, sensory, or cognitive difference, and their interplay with the social embedment of ‘disability.’ How does my embodied, cultural, medical, or social placement as ‘disabled,’ in all its uncertain signification, inform my consumption and labor with literary texts?

Notes 259 4. We published our musings in the Australian performance studies journal About Performance, in a special issue about performance and photography (2008), in an intersected multi-voiced essay similar to that of the Burning: Community essay, Chapter 5 in this book. 5. See, for instance, Marcy Epstein, 2005, on using a Medea-lens to approach contemporary representations of women; Anne Basting and Robin Mello’s 2010 Penelope Project in Milwaukee with people in long-term care environments, in collaboration with university students and Sojourn Theatre. 6. I wrote about this fascination in the context of teaching a disability culture graduate class, and holding a disability poetry banquet, see Kuppers, 2006a. 7. Disabled characters multiply on the Greek stage, and disability studies scholars tell us both about the killing of disabled infants (a plot device in Oedipus Rex), and the metaphorical presence of disability. See, for instance, Stiker (1999), Garland (1995), and Rose (2003). Henri Stiker is explicit on how he constructs his vision of disability in Classical Antiquity, given the paucity of textual evidence about that which is deliberately vanished, and he refers back to Marie Delcourt (1938). These moments of transmission with all their failures and complexities are themselves interesting, not only in the light of whether or not certain issues were true and a historical reality, but also in terms of the desires and wishful perspectives all researchers, whether in disability studies or not, bring to their subjects. 8. The undecidability of Tiresias, his veiled nature, has provided fuel for many explorations, and from Eliot’s Wasteland to Guillaume Apollinaire’s poems and his Surrealist play The Breasts of Tiresias (1903), the ‘tiresian’ has currency as a symptom catalogue of modern disjuncture and distance (McFarlane, 1976), or holds privilege as a form of memory that allows viewers to connect and link the fragmented visual culture of modernity (Iampolski, 1998). Tiresias is the lynchpin of gender play in Madden’s analysis of modernist queer poetics (2008), and, though not specifically about the seer, the sexual dissent of non-identity provides fuel for crip/queer politics that hold against heteronormativity and compulsory able-bodiedness, as Robert McRuer and Abby Wilkerson argue (2003). Methodologically, this undecidability does not work well (or kindly) with the instruments of literary criticism and its location of citation. To locate: the story comes to modern writers through Ovid, Pindar, Plutarch, and Appolodorus, through snippets of information in Antigone, The Bacchae, and Oedipus Rex, through gossip, through hearsay, to what I pick up from Delcourt (1938), and through what rhetorics scholar Jay Dolmage shared with me from his unpublished doctoral thesis (2006). My intention is not to trace the differences and complexities of each specific classical occurrence of the seer, but to do myth-work, that is, to tell the story on. 9. This is not a new claim, or a new desire, and I understand our labor to be part of the wider field of disability arts, and disability and art. Many queer- and gender-activist choreographers have worked with CandoCo, for instance: Emily Claid, Javier de Frutos, Nigel Charnock (and his company, DV8, has also cast disabled dancers in their shows and videos). Wry Crips, Neil Marcus’s play My Sexual History: there are many examples of dancers using either talk about sexuality or the display of naked disabled bodies as a way to insert themselves differently into the public sphere.

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10. This is by no means always a joyful reclamation. These stereotypes are part of who we are, and most performance artists I know who put themselves solo on the spot have to deal with the fallout of their actions, and are wary and aware of potential costs, even if there’s great power and energy in the moment of defiance. Rosemarie Garland-Thomson writes on female performance artists’ invitation to stare (at them): ‘By boldly inviting the stare in their performances, Cheryl Marie Wade, Mary Duffy, Carrie Sandahl violate the cultural proscription against staring, at once exposing their impairments and the oppressive narratives about disability that the prohibition against staring attempts to politely silence’ (2005: 32), see also Garland Thomson, 2009, which explores the starer/staree dynamic in more breadth. As a director/ producer who orchestrates gazes (and is well aware of the willful nature of eyes and all senses, their refusal to be nicely herded into one direction by a stage and its cues), I have learned that this dynamic of challenging the starer through the actions of the staree is often fraught with tensions and pain, and the results are often unpredictable. 11. To build a community also means that there are people to fall back upon, and when I was unable to take two sessions, Olimpias collaborator Aimee Cox took over and engaged my class in exciting debates about social justice, race, and disability. 12. George Jensen reads Alcoholics Anonymous narratives through a Bakhtinian lens, and isolates segments of talks (‘Childhood,’ ‘Drunkology,’ ‘Coming to AA,’ ‘Now’) which make up an experienced AA member’s narrative voice at meetings and sustain both the program’s analysis of alcoholism and the community’s response (2000: 133).

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Index Bold entries refer to illustrations. Aberystwyth Center for Performance Research, 11–12 Aboriginal protests, 237 Adam (Paul Cotton), 148, 232 aesthetic evaluation, 16 affect, and use of term, 9 Agamben, George, and bare/qualified life, 118–19 Ahmed, Sara, 9 Americans with Disabilities Act, 17 Amir, Leora, 122–3, 127, 136 Anarcha, 158 and disability culture history, 160–5 and fistula operations, 172 and Sims’s account of, 170–2 Anarcha Project and Anarcha Anti-Archive, 203 and Anarcha Project essay: Anarcha and disability culture history, 160–5; images of Sims, 176–8; memory of women, 175–6; modern criticism of Sims, 173–5; object of, 158; remembering Anarcha, 158–60; Sims’s writings, 168–72; the stun, 165–7; visibility of ghosts, 176–9 as container for experience, 205 and Cyber-Anarcha, 202–3 and felaweshipe, 157 and impact of, 206 and leaders of, 189 and performative lecture script, 180–7; first visit to gynecologist, 181; object of, 180; objectification, 180; responsibilities of historical work, 180–1; searching for Anarcha, 182–6 and process report, 188–206; addressing different experiences,

196; contentious community, 189–91; cyber-participation, 202–3; exclusion of medical details in workshops, 190–1; fractured storytelling, 188; gospel song, 201; incontinence, 192–3; ongoing changes, 189–90; personal vulnerability, 196–9; political mobilization of affect and emotion, 200; reasons for project, 192–5; setting up a circle, 203–5; shame, 192, 194, 199; song, 200–2; Symposium at University of Michigan, 197–200; touch contact, 191–2 and sharing objects exercise, 156 see also Sims, James Marion Anderson, Benedict, 74 Anzaldúa, Gloria, 16, 235 Apollinaire, Guillaume, 259n8 Arnieville, 237–9 Artaud, Antonin, 11, 129 Ashikawa, Yoko, 114, 254n7 Atamira Dance Collective, and Ngai Tahu 32, 61–2 Axelsen, Diane, 162 Axis Dance, 243n15 and aesthetic evaluation, 16 and performances of, 16 and physically integrated dance workshop, 1–3, 3–4, 5, 12–13, 31 Baartman, Saartje, 166–7, 257n10 Bachelard, Gaston, 38–9, 40, 41 Bare Bones Butoh, 113–14, 125, 139 bare life, 118–19 Barker-Benfield, Graham J, 169–70 Barthes, Roland, 252n11 Baudelaire, Charles, 218 Bausch, Pina, 45 Bayer, Tom, 217 274

Index 275 Bell, Rodney, 12–13, 14, 22 and Sins Invalid, 14, 21–2 Benjamin, Walter, 9, 11, 118, 245n21 Benterrak, Krim, 11 Berne, Patty, 22 Berlant, Lauren, 247n6 Beuys, Joseph, 45 black feminism, 165–6 Braun, Christina, 112 Brecon Beacons National Park and access to, 75 and ‘Lady of the Lake’ legend, 77–8 Brinker, Wendy, 175 burn-out, 142, 143 Burning project and aims for, 147 and audience response, 139 and bodily fantasies on the limit, 146–50 and bodily transformation, 129–30 and Burning circle, 145 and Burning Wiki: Butoh dis/ability thread, 128–9, 130–1; cancer writing thread, 131–4, 141; cell image rewrite, 136; cyberparticipation, 140–1; engagement, 127; origins of project, 124–5; outcomes thread, 125–7; reasons for participation, 122–3; visual art thread, 137–8 and Butoh, 112, 113; performance explorations, 114–16, 117, 118, 120 and Corporeal Distance, 137 and desired outcomes, 126, 127 and embodied poetics, 130 and energy, 126–7 and ethical concerns, 131, 133 and experimental responses to, 110 and the Gardener, 128–9 and installation/performance score, 137 and knowledge production, 141 and movement meditation sequences, 146–7, 148–9 and nano flowers, 135 and origins of, 124–5 and pain of performers, 117

and participatory performances, 147–8 and performance text, 125, 128 and performances of, 125–6 and performer’s response to, 139–40 and plant movement, 114–15 and poet’s perspective on cancer, 133–4 and potential diagnosis of cancer, 132 and program note, 137 and rehearsal, 112 and skin performance, 134–5 and subjects of, 112–13 and synopsis of, 128 and visual art, 137–8 and workshops, 130; heart athletes, 129; methods used in, 125; response to, 135–6, 138 Burns, Harold, 135–6, 138, 148, 240 Burton, Richard, 105 Butoh, 110 and abjection of the body, 113 and appeal of, 114, 116 and audience reaction, 118 and bare life, 118–19 and Burning project, 112, 113 and desire to be disabled, 116–17 and German expressionist dance, 113 and Hiroshima, 113 and Marcus on, 130–1 and performance explorations, 114–16, 117, 118, 120 and pure life, 115 and state of exception, 119–20 as a tendency, 115 and translated writings, 113 Butoh San Francisco Festival, 114 Campion, Jane, 67 cancer, see Burning project CandoCo, 123, 254n9, 259n9 Carr, Liz, 21 Carson, Anne, 205 casting, 243n15 change, and performance, 35 Chester, Tabitha, 190, 195, 200–2 Cheu, Johnson, 109–10

276

Index

Chisenhale Dance Space, 35 and inaccessibility for wheelchair users, 37 and influence of, 37 see also Landscaping circle, and use in community sessions, 145–6 Cixous, Hélène, 11, 35, 242n8 Clare, Eli, 21, 24, 245n20 Clare, Jaehn, 110 Clifton, Lucille, 239 Coastal Mappings, 50, 65 and audience comments, 59 and audience participation, 59 and choice of hospice as project location, 50–1 and components of, 60 and Dance with a Difference sessions, 55–6, 57 and experience of working in a hospice, 62–4 and final sharing in hospice, 62 and focus of research, 51 and hidden core of experience, 55 and land stories, 51–4 −ori and Mona House Hui (Ma assembly), 60–1 and music, 57–8 and performance installation, 56–9 and photography, 52 and poetic fragments, 56–7, 58–9 and sharing circles, 59 and Story/Movement exchanges, 60 and storytelling, 51 and witnessing images, 52, 53–4 collaborative improvisation, 246n3 communication, and Landscaping, 41 community and critique of community ideals, 74 and disability culture, 109 and ‘Earth Stories’, 80–1 and exclusionary concepts of, 74 and inoperative community, 71 and myth-making, 71 and nature of, 70–1, 81, 84–5 and problem of national community, 74 and storytelling, 71–2

community art, 85–6 and participants’ experience of, 86 community performance, 242n7 and pedagogy challenges, 227–31 community projects, and funding, 248n1 compassion fatigue, 142 connection, 9, 143, 144 Cotton, Paul (Adam), 148, 232 Cox, Aimee Meredith, 156, 178–9, 189, 197–9 Crescendo, Johnny, 21 cripple and cripple poetry, 24–9 and use of term, 23 critical theory, 11 and framings of representation, 9 Croce, Arlene, 254n9 CUIDO (Communities United in Defense of Olmstead), 237 cultural studies, 64, 65 Cvetkovitch, Ann, 247n6 cyborgs, 153, 255n1 Daly, Mary, 170 Dann, Autumn, 223, 232 Davidson, Michael, 241n1 Davies, Dominic, 15 de Certeau, M, 41 and habitation, 79 and knowledge created by stories, 80 and legends, 79 and resistance, 78, 81 and strategy and tactics, 78, 79 Deleuze, Gilles, 11, 41, 91, 92 and collective assemblage, 111 and criticism of, 250n2 and deterritorialization, 101, 145 and minor literature, 102, 103 and nature of philosophy of, 93 and rhizomes, 92, 94 and schizoanalysis, 93, 250n5 and A Thousand Plateaus, 92, 93 Derrida, Jacques, 9, 11, 233 desiring machines, 92–3 deterritorialization, 101, 145 Dillard, Mandy, 148 Dinshaw, Carolyn, 153–4 DiPietra, Amber, 122, 148

Index 277 disability and cultural obsession with, 209 and definitions, 242n4 as form of embodiment, 209–10 as individuating experience, 97–8 and lived experience of, 91 and medical model of, 95 and models of, 94 and rhizomatic model of, 95–7; disability poetry, 98–101; ‘disabled lilacs’ videopoem, 105–7; pain, 95–7 as slippery word, 94 and social model of, 94, 251n6 disability activism, and poeti(x) of, 233–40 disability cultural environments, and features of, 4 disability culture, 3 and an anthropology of, 3–12 and community, 109 and disability poetry, 98–101, 108; ‘disabled lilacs’, 103; ‘disabled lilacs’ essay/prose poem, 104–5; ‘disabled lilacs’ still ‘photo, 106; ‘disabled lilacs’ videopoem, 105–7 and diversity of aesthetic political critique, 17 and elements of, 109 and multiple perspectives of members of, 18, 23 as a process, 4 and radical understanding of, 17 and variety of attitudes towards ‘mainstream’, 17 disability justice, 17–18, 244n17 Disabled People Outside, 237 disclosure and connection, 143, 144 and impression management, 149 and means of, 142 and trauma narratives, 149–50 DIY, 234 DIY(x), 234 and form/ation, 236–9 and reform/nation, 236 and remediation, 240 the stone, 235–6 and transformation, 239–40

Durgin, Patrick, 251n8 dysaesthesia aethiopis, 161 Earle, Carolyn, 232 ‘Earth Stories’, 70, 73 and community, 80–1 and community art, 85–6 and ‘Lady of the Lake’ legend, 77–8, 80, 81; videopoem, 81–3 and participants’ experience of, 86 and process-based workshops, 81 and use of legends, 79 Ehrenreich, Barbara, 170 Eiko, 113, 114 Ely Cathedral, 221–2 energy and theorizing of, 9 and use of term, 9–10 English, Deidre, 170 ethics, and performance interventions, 65 eurhythmics, 44 Eurydice, 44, 45, 209, 210 euthanasia, 236 exception, state of, 118–20 Fanon, Frantz, 16 Fantastic Voyage, 134 Fed, 165 felaweshipe, 154, 155, 157 feminism and black feminism, 165–6 and community mobilization, 74 and crip thought, 153 Ferris, Jim, 217 Fiser, Karen, 96 fistulas and development of procedures to close, 158 and developmental approaches to repair, 256n5 and ostracization, 161 and pain, 161–3 and Sims’s experimental operations, 172 and Sims on effects of, 162 see also Anarcha Project; Sims, James Marion Fjord, Lakshmi, 105–6, 107

278

Index

formal in practice, 143 and ways to think about, 143 Foucault, Michel, 78, 79, 144 foundational stories, 71, 76 Fraleigh, Sondra Horton, 114, 254n7 Frame, Janet, 66–7, 69, 247n8 Fraser, Mat, 21 Fraser, Nancy, 244n16 Freeman-Dykesen, Leslie, 24 Freud, Sigmund, 7 Garland-Thomson, Rosemarie, 241n2, 260n10 Gates, Henry Louis, 258n2 ghosts, and literary remembering of slavery, 178 Gill, Carol, 109 Gilles, Sonsherée, 1, 243n15 Gillespie-Sells, Kath, 15 Giraud, Tiye, 189, 201–2 Goffman, Erving, 149 Gonzalez, Anita, 188, 189, 194, 195 Graham, Martha, 210–11 group identity, and contradictions in, 91 Guantanamo Bay prison, 119 Guattari, Félix, 11, 91, 92 and collective assemblage, 111 and criticism of, 250n2 and deterritorialization, 101, 145 and minor literature, 102, 103 and nature of philosophy of, 93 and rhizomes, 92, 94 and schizoanalysis, 93, 250n5 and A Thousand Plateaus, 92, 93 habitation, 79 Hamilton, Thomas, 165 haptic, and concept of, 92 haptic smooth space, 92 Haraway, Donna, 153, 255n1 Harris, Seale, 163 Hartman, Saidiya V, 156 Hass, Robert, 133 Herodotus, 218–19 Higgins, Nancy, 56, 58 Hijikata, Tatsumi, 113, 116–17, 253n3 history, 153, 154–5 see also Anarcha Project

Hobson, Janell, 159, 166 Hoffmann, E T A, 7 hospices, and experience of working in, 62–4 see also Coastal Mappings houses, and Bachelard on, 38–9, 40 identity politics, 97, 249n1, 253n1 imagined communities, 74 impression management, 149 incontinence, 192–3 Inglis Workshop, 24 insider research, 243n11 intelligibility, 144 Intensities: Praxis and the Body (graduate conference, 2001), 12 interdependence, 29, 101, 102, 196, 234 Irigaray, Luce, 11, 16, 233, 235 Iwana, Masaki, 115 Jackson, Shannon, 64, 243n10 Jaques-Dalcroze, Emile, 44 Jenkins, Candice, 198 Jensen, George, 260n12 Kapsalis, Terri, 159 Kete, Mary Louise, 102 King, Truby, 67, 247n8 Kiple, Kenneth and Virginia, 165 knowing, and thinking differently, 144 Kochhar-Lindgren, Kanta, 35, 38, 39, 41, 47 Koenig, Gerda, 243n15 Kokoro Dance, 113 Koma, 113, 114 Kupers, Eric, 139–40 Kwon, Miwon, 249n3 Laban, Rudolf von, 14, 40, 41 land rights, and dance, 247n5 Landscaping, 37, 39 and assessment of performance, 48–9 and audience participation, 47 and audience reaction, 45–6 and challenges of, 38 and communication, 41 and creation process, 43 and legends, 41–3

Index 279 and maps, 42 and McCormack’s account of, 43–5, 48 and Orpheus sequence, 43–5 and performance sharing, 46 and space and meaning, 38–41 and transforming process, 47–8 and variety of moods, 46–7 language and cripple poetry, 24–9 and description of disabled, 23–4 legends and ‘Earth Stories’, 79; ‘Lady of the Lake’, 77–8, 80, 81; still from video, 82; videopoem, 81–3 and habitable spaces, 79 and interaction between strategy and tactics, 78–9 and Landscaping, 41–3 and role of, 79 and ‘Sleeping Giants’ videopoem, 83–4 Lewis, Victoria, 245n18 Lingis, Alphonso, 11 Lisney, Eleanor, 191–2 Longmore, Paul, 245n18 Lorde, Audre, 142, 147, 148, 209 Lynch, Alexandria C, 158 McCauley, Robbie, 256n2 McCormack, Derek, 35, 36, 39, 40, 43–5, 46, 47 McGregor, Deborah Kuhn, 162, 163, 177 McNamara, Julie, 21 Madison, Soyini, 11 Magubane, Zine, 257n10 Makateha, Hone, 58, 62 Manning, Lynn, 21, 98–9, 217 maps, and Landscaping, 42 Marchetto, Marisa Acocella, 150 Marcus, Neil, 237, 240 and Axis Dance workshop, 1–2, 3 and Burning project, 112, 125–6, 128–9, 141, 148 and Butoh, 130–1 and cripple poetry, 24–9 and ‘Disabled Country’, 99–101 and ‘disabled lilacs’ videopoem, 105, 106, 107

and Fantastic Voyage, 134 and pain, 117 and ‘The Metaphor of Wind in Cripple Poetics’, 24–5 and Tiresias Project, 213, 225, 232 Marin, Maguy, 7 Mazur, Thais, 243n15 medical experiments, see Anarcha; Anarcha Project; Sims, James Marion meditation, and movement meditation sequences, 146–7, 148–9 Mee, Chuck, 6 mental health and community art, 85–6; see also ‘Earth Stories’; ‘Sleeping Giants’ and experiences of, 75–6 and marginalization of rural issues, 74–5 and Wales, 74–5 Merleau-Ponty, Maurice, 97 Mikami, Kayo, 116 minor literature, 102–3 and disability poetry, 108 Moment’s Notice, 126, 139 Moore, Leroy, 22 Morrison, Toni, 178 Moten, Fred, 200 Muecke, Stephen, 11, 247n3 Mulder, Amy, 110 Murphy, Jacqueline Shea, 247n5 myths, 153 and community, 71 and interaction between strategy and tactics, 78–9 and post-colonial appropriation, 247n3 see also legends Nancy, Jean-Luc, 29, 80 and community, 70–1, 84–5 Nazis, and euthanasia, 236 New Zealand, see Coastal Mappings; Seacliff project Ngai Tahu 32, 61–2 Noh drama, 118 non-verbal communication, 145 normate, 241n2 Nottage, Lynn, 256n5

280

Index

O’Leary, J Patrick, 174 Olimpias, 5–6, 7 and Chisenhale residency, 35, 36 and collaborators in, 123 and origins of name, 7 and performance experiment in the Cave, 7–9 and rehearsals as workshops, 123 and working practices, 123–4 Orpheus, 209 and Landscaping, 43–5 pain and Burning project performers, 117 and fistulas, 161–3 and nature of, 255n1 and rhizomatic model of disability, 95–7 performance and change, 35 and efficacy of, 64 and intervention, 65 and political power of, 64 as spatial art form, 36 Performance Studies, 64 performative writing, 12 Phelan, Peggy, 11, 12 photography, and Coastal Mappings, witnessing images, 52, 53–4 physically integrated dance, and Axis Dance workshop, 1–3, 3–4, 5, 12–13, 31 Plummer, Caroline, 50–1 poetry and cripple poetry, 24–9 and Deleuzoguattarian concepts, 93–4 and disability poetry, 98–101, 108, 253n2; ‘disabled lilacs’, 103; ‘disabled lilacs’ essay/prose poem, 104–5; ‘disabled lilacs’ still ‘photo, 106; ‘disabled lilacs’ videopoem, 105–7 and ‘Earth Stories’ videopoem, 82–3 and minor literature, 102–3 and ‘Sleeping Giants’ videopoem, 83–4 political action, 10

Pollock, Della, 11 Potiki-Bryant, Louise, 61 Price, Janet, 251n6 Probyn, Elspeth, 9 Purgatory Possible Projects, 124 queer history, 154 Quest, Seeley, 18 and ‘he has short arms’, 18–21 racism, 166–7 Rafferty, Kelly, 125–7, 134 rape, and slaves, 171, 257n14 resistance, 81 and nature of, 78 respectability, 198–9 rhizomes, 92 and deterritorialization, 101 and hypertext literary production, 93–4 and rhizomatic model of disability, 95–7; disability poetry, 98–101, 108; ‘disabled lilacs’ videopoem, 105–7; pain, 95–7 Richards, Penny, 191 Roach, Joseph, 84 Roe, Paddy, 11 Romoser, Mark, 148, 240 Sandahl, Carrie, 156, 189, 193 Sanders, Gilman, 257n10 Sartin, Jeffrey S, 173–4 Sartori, Melissa, 226 Sas, Miryam, 253n4 schizoanalysis, 93, 250n5 Schneider, Francisca Miranda, 28–9 Schwarzenegger, Arnold, 236, 237 Seacliff project, 66–9 second-wave disability movement, 244n17 sexuality and disability, 15 and Sins Invalid, 15–16 see also Tiresias Project Shakespeare, Tom, 15 Shapiro, Jo, 253n1 Sherry, Mark, 10 Shildrick, Margrit, 251n6 Siebers, Tobin, 255n1

Index 281 Sims, James Marion, 158, 159 and Anarcha, 170–2 and contemporary reactions to experiments, 163, 169 and effects of fistulas, 162 and feminist criticism of, 170 and images of, 176–8 and invention of speculum, 158, 168 and modern criticism of, 169–70, 173–5 and Sims position, 168 and triumphalist epitaph of, 163 and use/non-use of anesthesia, 174–5 and use of opium, 163–4 and vaginismus, 168–9 Sins Invalid and aesthetic evaluation, 16 and audience for, 14 and audience reaction, 15 and ethnicity, 22 and ‘he has short arms’, 18–21 and performances of, 15, 16, 21–2 and race, 22 and self-description of, 14 and sexuality, 15–16 site-specificity, 36 Sklar, Deidre, 3 slave experiments, see Anarcha; Anarcha Project; Sims, James Marion ‘Sleeping Giants’, 70, 83–4 and community art, 85–6 Smith, Judith, 243n15 Smith, Owen, 254n9 social justice, 17 social mobility, 199 somatic poetics, 142–50 space and Landscaping, 37, 40–1; assessment of performance, 48–9; audience participation, 47; audience reaction, 45–6; challenges of, 38; communication, 41; legends, 41–3; Orpheus sequence, 43–5; performance sharing, 46; transforming process, 47–8; variety of moods, 46–7 and meaning, 36, 38–41

and performance as spatial art form, 36 and performance practice, 36 and re-coding of, 36 and service areas of buildings, 37 speculum, and Sims’s invention of, 158, 168 Sposito, Gary, 133 Squamata, 216 St Pierre, Elizabeth, 143–4 stairs and Landscaping, 38 and meaning, 38 Steichmann, Jay, 204 Steichmann, Lisa, 107, 240 and Tiresias Project, 210, 212, 214, 232 Stein, Bonnie Sue, 118 Stein, Gertrude, 111, 234, 235 Stewart, Kathleen, 11 storytelling, 16 and community, 71–2 and connection, 143 and knowledge created by, 80 see also Coastal Mappings; legends; myths strategic political practice, 78 Subterranean Arthouse, 147–8 SymbioticA, 124 system-critique/building, 243n10 T4, 236 tactical political practice, 78 Taussig, Michael, 11 Taylor, Diana, 257n7 Thomas, Dylan, 105 Thrift, Nigel, 9 Thum, Robert, 176–7 Tiresias, 209, 210 in Greek drama, 212 Tiresias Project, 210 and aspects of, 210 and author’s reflections/meditations on, 212–25; blinding of Tiresias, 224; desert, 222–3; Ely Cathedral, 221–2; English myths, 220–1; figure of Tiresias, 212–13; Green Man, 221; Ouroboros, 224; photo shoots, 213–14;

282

Index

Tiresias Project – continued Rainbow Snake, 223; snakes, 215–17; Tiresias as prostitute, 218–20; Tiresias in olive plantation, 215; Tiresias in the temple, 214–15; Tiresias kills the snakes, 215, 216–17; Tiresias’s transformation into woman, 216–17; Tiresias turns aside from snakes, 220; words, 223–5 and community performance; Tiresias in the classroom, 231–2; discomfort in classroom, 231; fractured storytelling, 230; grading, 230; pedagogy challenges, 227–31; process as product, 229–30; purpose of, 228; rehearsals, 228–9; themes of, 226 and heart of, 210 and listserv, 210, 212 and photo archive, 210 and photo series, 214, 219, 223, 225, 232 and seduction, 211 and video stills, 213, 217 and videodance, 217–18, 222 Touch Compass Company, 13 trauma narratives, 149–50 trust, 156 uncanny, 7 University of California Berkeley, and Telematics Laboratory, 7–9 vaginismus, 168–9, 257n12 Van der Klei, Alice, 93–4, 108

verticality, 42–3 vibration, 9 von Linné, Carl (Linneaus), 216 Wade, Cheryl Marie, 23, 110 Walden, Elizabeth, 140–1 Wales and Brecon Beacons National Park, 75 and image of, 74 and inhabitants of, 73–4 and mental health, 74–5, 75–6 and Welsh language, 73 see also ‘Earth Stories’; ‘Sleeping Giants’ Wall, Lewis L, 160, 256n5 Walloch, Greg, 21 Wanzo, Rebecca, 199–200 Warner, Martha L, 203 Wendell, Susan, 251n6 White, E Francis, 165–6 Whitman, Walt, 241n1 Wilcox, Sadie, 107, 137–8, 148, 240 Williams, Raymond, 64, 65 Wittig, Monique, 209 Woolf, Virginia, 217 Wynne, David, 221 Yates, Kristina, 214, 232 Yi, Chun-shan (Sandie), 148, 240 Young, Iris Marion, 74 Ystradgynlais, 73 see also ‘Earth Stories’; ‘Sleeping Giants’