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 Embodied
Performance as
Applied Research,
Art and Pedagogy

JULIE-ANN
SCOTT

Creativity,
Education
and
the Arts
 Creativity, Education and the Arts

Series editor
Anne Harris
Royal Melbourne Institute of Technology
Melbourne, Australia

Like the best autoethnographic scholarship, Prof. Scott’s moving contribution to

disability and performance studies leverages personal experience to clarify and the-
orize concepts. Her generative refunctioning of “hyper-embodiment” coordinates
insights from existential phenomenology, disability studies, and critical cultural
studies to afford a model of a methodological orientation toward rigorous empa-
thy. This is the story of an embodied mind taking nothing for granted, building
stories of how questions, big questions about social justice and our recognition of
one another’s mortality, animate the intersection of research and artistic practice.
—Craig Gingrich-Philbrook Professor, Southern Illinois University, USA

Julie-Ann Scott has written a book that is, to use two of her terms, “risky” and “sus-
ceptible.” In a provocative and useful blend of explanation of research methods and
philosophies and her own personal journey through performance ethnography, as
artist, director, and teacher, she shows us how to think about, write and speak about,
and perform the stories of others, in ways that address artistic and ethical questions of
great importance to those interested in this growing field. Written at an intellectual
level that will engage scholars and artists, yet in language that is accessible for those
community activists who may be building bridges between everyday life and social
justice, this book is an important contribution to performance studies, disability stud-
ies, and ethnography. I was captivated from the start and was sorry to see it end.
—Bruce Henderson Professor, Ithaca College, USA

Julie-Ann Scott’s Embodied Performance as Applied Research, Art & Pedagogy is a

stunner of a book. Through a series of gorgeously crafted and questioning auto-
ethnographic accounts, dialogues, and pedagogical case studies, Scott shows us the
power of hyper-embodiment to achieve acceptance, to learn with and teach others,
and to work for a more just and ethical world. A must-read for cultural, perfor-
mance and disability studies, qualitative research methods, storytellers, social jus-
tice workers, and educators.
—Stacy Holman Jones Professor, Center for Theatre and Performance, Monash
University, Australia
This series emerges out of recent rapid advances in creativity- and arts-­
informed research in education that seeks to reposition creativity studies
within (and in conversation with) education as a multi- and interdisciplin-
ary field.

This series takes as its starting point the interrelationship between arts-­
based research and a growing neuroscientific, cultural and economic dis-
course of creativity and creative industries, and the need for education to
play a larger role in these expanding discourses. It also takes as a priori an
invitation to creativity scholars to move more robustly into theorizing
the work of arts- and creativity-based research work, bridging a historical
gap between ‘science’ and ‘art’, between ‘theoretical’ and ‘applied’
approaches to research, and between qualitative and quantitative research
paradigms.

The following are the primary aims of the series:

• To publish creativity research and theory in relation to education

(including schools, curriculum, policy, higher education, pedagogy,
learning and teaching, etc.).
• To put education at the heart of debates on creativity, re-establish
the significance of creativity for learning and teaching and develop-
ment analyses, and forge links between creativity and education.
• To publish research that draws on a range of disciplinary and theo-
retical lenses, strengthening the links between creative and arts edu-
cation and geographies, anthropology, creative industries, aesthetics
and philosophy, history, and cultural studies.
• To publish creativity research and theory with an international scope
that explores and reflects the current expansion of thought and prac-
tice about global flows, cultural heritage, and creativity and the arts
in education.

More information about this series at

http://www.palgrave.com/series/14926
For the past several decades, the field of Performance Studies has been calling for
embodied performance research. Julie-Ann Scott delivers on a wide variety of lev-
els. Through a careful, thoughtful, and deeply critical exploration of her own per-
spective of narrative and body in conjunction with the bodies of her sons, students,
colleagues, and community, she explores ethnography and storytelling in a com-
pelling for performance artist/scholars to use in their courses. In an era where
recognizing systemic marginalization of the other is a crucial part of understand-
ing cultural performance, Scott’s work helps us probe beyond definition into the
multi-layered complexities of embracing vulnerability and performing self.
—Heather Carver, Professor, University of Missouri, USA
 Julie-Ann Scott

Embodied
Performance as
Applied Research, Art
and Pedagogy
Julie-Ann Scott
Department of Communication Studies
University of North Carolina Wilmington
Wilmington, NC, USA

Creativity, Education and the Arts

ISBN 978-3-319-63660-3    ISBN 978-3-319-63661-0 (eBook)
https://doi.org/10.1007/978-3-319-63661-0

Library of Congress Control Number: 2017957899

© The Editor(s) (if applicable) and The Author(s) 2018

This work is subject to copyright. All rights are solely and exclusively licensed by the
Publisher, whether the whole or part of the material is concerned, specifically the rights of
translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on
microfilms or in any other physical way, and transmission or information storage and retrieval,
electronic adaptation, computer software, or by similar or dissimilar methodology now
known or hereafter developed.
The use of general descriptive names, registered names, trademarks, service marks, etc. in this
publication does not imply, even in the absence of a specific statement, that such names are
exempt from the relevant protective laws and regulations and therefore free for general use.
The publisher, the authors and the editors are safe to assume that the advice and information
in this book are believed to be true and accurate at the date of publication. Neither the pub-
lisher nor the authors or the editors give a warranty, express or implied, with respect to the
material contained herein or for any errors or omissions that may have been made. The
publisher remains neutral with regard to jurisdictional claims in published maps and institu-
tional affiliations.

Cover illustration: Diane Caudill / EyeEm / Getty Images

Printed on acid-free paper

This Palgrave Macmillan imprint is published by Springer Nature

The registered company is Springer International Publishing AG
The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland
 This book is dedicated to Evan, Tony, Vinny, and Nico.
Thank you for your love, support, and vital roles in my story.
This book, my research, my art, and this life I love are possible because
of all of you.
 Dear Readers

This book has multiple audiences.

I write to my academic peers who also grapple with how to reach inside
and outside of the academy as we ask important questions and find answers
in our writing and art to share with each other, our students, and external
audiences. This book is my journey through my disabled body in aca-
demia. It maps my struggles to make the world more empathetic, open,
and inclusive through narrative research, applied learning, and storytelling
performance, with all the messiness and compromises that surface along
the way. I look forward to engaging with you further on what perfor-
mance research and pedagogy in pursuit of social justice means and can
look like.
I write to new researchers, perhaps currently enrolled in courses focus-
ing on qualitative research, performance, disability, and/or cultural stud-
ies, who are wondering how the authors they read find their topics and
come to hold their positions. This book tells my story as a performance
and storytelling researcher navigating methodological, pedagogical, and
artistic questions that I hope inspire you to envision your responses to the
complexities of being cultural researchers, performers, and teachers.
I write to graduate students and new PhDs who are balancing the
teaching, research, and service expectations of higher education. I hope I
can give you a window into the process of engaging undergraduates in the
co-creation of your performance research and provide a springboard for
your potential projects.
I write to readers who picked this up even though you are not a formal
member of a university community. Thank you for your interest in the

ix
x DEAR READERS

journey of a professor desiring to connect with and beyond other profes-

sors and students. This book explains how my embodied experiences
brought me to my work. Blending social science inquiry and storytelling
performances can engage wide audiences in the pursuit of social justice,
creating a world where everyone has an opportunity to reach their full
potential as valuable citizens. Stories stay with us, interweaving themselves
into our understandings of self and others in ways traditional research
articles may not. Your stories, like the ones I’ll share, provide insights into
what it means to be a human struggling for knowledge, understanding,
and connection. I hope you’ll share them.
 Previous Titles in Series

Creativity, Education and the Arts

Series Editors:

Anne Harris, RMIT University, Australia

Titles include:

Anne Harris

Creativity and Education

Jerome Cranston and Kristin Kusanovich

Ethnotheatre and Creative Methods for Teacher Leadership

Chris Hay

Knowledge, Creativity and Failure

Chris McRae and Aubrey Huber

Creating Performances for Teaching and Learning

Tatiana Chemi

xi
xii Previous Titles in Series

A Theatre Laboratory Approach to Pedagogy and Creativity

Michael Crowhurst and Michael Emslie

Working Creatively with Stories and Learning Experiences

Gloria Latham and Robyn Ewing

Generative Conversations for Creative Learning

Stacy Holman Jones and Marc Pruyn

Creative Selves/Creative Cultures

 Acknowledgements

So many people have made this project possible. I want to thank Evan, who
knew I had a book to write before I did, and my three boys, Tony, Vinny,
and Nico, who make “Mama’s writing” part of their lives with enthusiasm. I
am thankful that Anne Harris chose to create this series and include my work
in it. Kristin Langellier taught me the performance and narrative methodolo-
gies that I continue to explore. Bruce Henderson provided support and
mentorship from the beginning of my career as a disability and performance
studies scholar. Heather Carver, Karen Mitchell, Heidi Rose, Tim Miller,
and Jim Ferris invested time in enabling me to navigate successfully through
performance studies. Without them I would not have arrived at a place
where I felt confident pursuing a project like this one. I learned to be an
autoethnographer through journal editors who gave such thoughtful feed-
back on my submissions to their journals: Stacy Holman Jones, Tony Adams,
Jimmie Manning, Keith Nainby, and Norman Denzin. I want to thank Bruce
McKinney, Vernon Cronen, and Steve Pullum, who encouraged me to pur-
sue this project, and Hana Noor Al-Deen, who provided advice along the
way. UNCW ETeal offered financial support to make this pedagogical
research happen, and Frank Trimble, Bill Bolduc, and Trahern MacLean col-
laborated on the films featured within it. Craig Gingrich-Philbrook and
Brian Grewe coordinated opportunities for me to form these arguments
through conference collaborations. Mark Johnson, Rick Olsen, David
Weber, Aubrey Huber, Jennie Bryant, and the UNCW Applied Learning
Research Cooperative provided feedback on previous drafts of this book. It
wouldn’t be where it is without them, or all the students, colleagues, com-
munity partners, and research participants that make up the pages. Thank
you. To all of you. I’m deeply indebted to the profound support system I
have in work and in life.
xiii
 Contents

Chapter 1: Researcher Positioning as Embodied Experience   1

I Always Knew…   1
The Role of the Stories We Live in the Research We Do   2
Our Bodies Perform for and with One Another in Culture   4
Personal Storytelling Performance is Visceral   4
Storytelling is Collaborative  10
Storytelling is Susceptible  14
The Reasons We Research and the People We Reach  20
So Now You Know  21
Questions for Discussion  22
References  23

Chapter 2: Connecting to the Bodies We Research  27

First Day of Qualitative Research Methodology Seminar  27
How Do We Know? Qualitative Research Methodology in
Practice  29
Positivism and the Objective Observer  30
But I Can’t Be Detached: Inner Monologue #1  32
Interpretivism and the Genuine Empathizer  33
But They Could Never Genuinely Understand: Inner
Monologue #2  35
Cultural Criticism and the Privilege Disrupter  36
But I’m Critical of the System I Also Want to Fit into: Inner
Monologue #3  38

xv
xvi Contents

Post-Structuralism and the Dismantling Reconstructer  40

And Maybe My Research Can Change the World: Inner
Monologue #4  41
The Researcher Isn’t Protected by the IRB  42
Why Would They Give Me Data? Inner Monologue #5  44
But this Matters Beyond my Degree  45
Fast Forward: Without Performance It Feels Unfinished  46
Questions for Discussion  49
References  50

Chapter 3: T
 here’s No Center Without the
Margins—Revealing Compulsory Performance
to Achieve Audience Empathy  53
November 2006: Orono, Maine  53
Researching Embodiment as Performance in Pursuit of
Social Justice  55
Performance Research on the Page: Transcribing as
Interpretation  56
Telling Stories Makes, Dismantles, and Remakes Us  57
Compulsory Able-Bodiedness and the Case for Hyper-Embodiment  60
Because We All Know Vulnerability: Achieving Hyper-Embodied
Positioning  63
Mortality as Physical and Social Vulnerability  66
Stories on Stage Connect Us  68
Questions for Discussion  74
References  74

Chapter 4: Creating Accessible, Pedagogical Storytelling

Performances as Research—Take 1  77
Research, Applied Learning, and Activism: The Struggles
of Combined Goals  77
What Performance Ethnography Is and What It Isn’t  80
Am I Even Qualified to Lead a Pursuit of Social Justice
for the Disabled Body?  82
But Is Performance Ethnography of Stories of Disability Possible?  84
What If They Are Not Empathetic? What If They Don’t Pursue
Hyper-­Embodiment?  86
 Contents 
   xvii

Fast Forward: August 2012  89

Teaching Empathetic Embodiment, Methodology, and
Performance  89
September 2016: Looking Back—Hyper-Embodiment is
Achievable  93
From a Public Screening as Part of a Series on Diversity  95
From a Campus Screening for Introductory Diversity Courses  95
From a Small Marketing Conference on Campus that
Asked Us to Show the Film and Explain the Logo the
Advertising Students Designed for It  95
Questions for Discussion  96
References  97

A Performance Transcription Exercise  99

I’m Going to Teach from the Garbage Can 100
A Sort of Phenomenological Amnesia 102
I Can’t Wear Long Hair Anymore 103
I Am Who I Am Supposed to Be and I Am Not in Any Way 105

Chapter 5: Can Rigorous Research Be Art for the Masses?

A Student/Teacher Debrief 109
Questions for Discussion 114
References 114

Chapter 6: Hyper-Embodiment and Outsider-Research-

Pursuing Empathy and Connection in the Field 115
Why Would You Care? Researching as an Outsider 115
Two Days Later: “Is that Too Emotional to Be Research?”
Responding to Critiques of Empathetic Research and
Storytelling Performance 121
The Struggle to Bear Witness Is Ongoing 127
Questions for Discussion 128
References 128

Chapter 7: Creating Accessible, Pedagogical Art as

Research—Take 2 131
Can Critical Work Be Easy to Watch? 131
xviii Contents

What is True Performance Ethnography Again? 136

Fast Forward to Fall 2014 136
Hyper-Embodiment and Pedagogy Materializing 138
Navigating Leading Others to Hyper-Embodiment 140
Seeing Performance Ethnographic Art and Applied Pedagogy
Reach Audiences 142
Fast Forward to November 2015 142
Questions for Discussion 144
References 145

Chapter 8: Can Rigorous Research Be for the Masses?

A Second Student/Teacher Debrief 147
Questions for Discussion 152
References 152

Chapter 9: Compromising Methodology for Open

Audiences 153
The Hawk Tale Players’ Method, Art, and Mission:
An Audience Adaptation 153
Sometimes Verbatim and Precise Embodiment Works 157
Sometimes the Character Needs Some Minor Tweaks 158
Sometimes the Content Just Isn’t Age Appropriate 158
Sometimes a Story Needs More than Minor Tweaks to
Content to Be Age Appropriate 159
Sometimes the Character Needs Major Tweaks 160
Sometimes an Interviewee Doesn’t Tell a Story 161
Pedagogical and Social Responsibility Revisited:
The Struggle Continues 162
Questions for Discussion 167
References 168

 Chapter 10: In Conclusion—A Call for Hyper-Embodied

Performance Research Pedagogy for Social
Justice 169
Storytelling as Research and Applied Learning Pedagogy:
A Curriculum 170
The Risks We Took 171
 Contents 
   xix

A Pedagogical Need for Embodied Tangibility 172

A Human Need to Bear Witness to the Stories of Others 176
A Cultural Need for Hyper-Embodiment Through Critical
Reflection 181
Questions for Discussion 183
References 184

 Chapter 11: E
 pilogue—The Next Performance Ethnographic
Show in Pursuit of Hyper-Embodiment 187

Glossary  191

References  195

Index  205
 Series Editor’s Introduction

All accounts of embodiment are not the same, nor are all performances.
“The body I live through matters,” Scott tells us, and that mattering
breathes through on every page of this tremendous book.
There is something profoundly evocative in Scott’s opening narration
of her self-described disabled child’s body, in a scenario that opens this
compelling text, about the difference between her self-perception and the
reflection she receives back from others in the public sphere, and the
merging of those two different perceptions in her literal reflection in a
shop window which acts as a mirror of many kinds. It is a universally rec-
ognizable moment in the memory of us all, as young people—perhaps
still—seeking ourselves out in shop windows, and in others’ eyes. Yet for
those with physical disabilities or other kinds of visible diversities, as with
Scott, such reflections can be betrayals or cruel alienations.
Scott uses her critical autoethnographic eye that is “a personal storytell-
ing performance as a pursuit of hyper-embodied positioning and social
justice,” and we are right there with her. Her close attention to “compul-
sory able-bodiedness and its connection to compulsory heterosexuality”
reminds us in material, discursive, and community-based ways about the
damage and patterns of intersectional bias and discrimination—and the
dangers of continuing to ignore intersectionality in scholarship, decades
on. Texts like Scott’s, which are able to take us affectively into accounts of
such pervasive and toxic social patterns, are like golden threads in the
cloth of respectful sociality, culturally responsive pedagogy, and good
scholarship.

xxi
xxii SERIES EDITOR’S INTRODUCTION

Scott turns around the stereotyping and stigmatization that she has
encountered and makes from it a unique form of “accessible storytelling
performance” which expands more traditional notions of critical qualita-
tive research and acts as a teaching text and engagement. This text embod-
ies the stages and components of qualitative research design (Battacharya,
2017), as well as the core tenets of critical autoethnography (Holman
Jones, 2016, 2005) and multiple arts-based research forms (think Patricia
Leavy’s Social Fictions series).
As Holman Jones has argued, “there is a vital yet often unrealized rela-
tionship between storytelling and critical approaches to autoethnography”
(2016, p. 1). She has spent years leading autoethnographic scholars away
from the personal narrative approach—the generic personal-is-political
cultural analysis—of traditional autoethnography and toward the intersec-
tional heavy lifting of critical autoethnography. Here Scott interweaves
queerness in a way not unlike Holman Jones’ demand that “queer stories
shadow and haunt accounts of what is valid, normal, and right” (2016,
p. 5), and that “queering” autoethnography is a way to continue the dis-
ruptive and anti-teleological project of queer theory that has been diluted
in other methodologies. Scott draws on top performance autoethnogra-
phy scholars including Tami Spry (2016), Craig Gingrich-Philbrook
(2013), Holman Jones, et al. (2013), Deanna Shoemaker (2013), Ron
Pelias (2014), D. Soyini Madison (2006), and Kristin Langellier (2009),
with whom Scott studied, and she handles them well, inviting readers into
the world of performance ethnography in accessible and exciting ways.

The Creativity of Crip Studies

Crip studies (Kafer, 2013; McRuer, 2002, 2006; Sandahl, 2003; Schalk,
2013) is a subdiscipline of the rapidly expanding disability studies field,
with a particularly political focus. Here Scott focuses on crip studies as
embodying and formalizing the attendant fears of mortality and vulnera-
bility that characterize a critical approach to disability scholarship, and
shows how it is inherently critical, queer, and interdisciplinary, linked to
the rise of global neoliberal markets and the corporatization of both schol-
arship and embodiment. Like performance studies, crip studies is closely
linked with queer theory and queer studies, pivoting on the Foucauldian
notion of governmentality, the policing of bodies, and the performative/
queer theoretical assertion that bodies are central to all sociality, intelligi-
bility, and creativity.
 SERIES EDITOR’S INTRODUCTION
   xxiii

On a practical level, Scott offers readers great discussion questions at

the end of each chapter and has structured the book in an accessible and
logical way. Her attention in the book to multiple audiences reflects its
inclusive content and diversity of form, theoretic and ethic. Finally, and so
importantly for this series on the interweaving of creativity, education, and
the arts, Scott articulates a desire to reach beyond academic and disciplin-
ary borders (in this case, autoethnographers) and to be in critical dialogue
with performance peers, creativity scholars, social justice workers, health
and education teachers, and artists of all kinds. Her ability to move beyond
the academy and academic audiences is a major contribution to this series,
and a growing imperative in scholarly publishing overall. I’m so pleased to
welcome this text into the series, and to midwife it into the world. Long
may it thrive.

References

Battacharya, K. (2017). Fundamentals of Qualitative Research: A Practical

Guide. London: Routledge.
Gingrich-Philbrook, C. (2013). Evaluating (Evaluations of)
Autoethnography. In S. H. Jones, T. Adams, & C. Ellis (Eds.), The
Handbook of Autoethnography (pp. 609–626). Walnut Creek, CA: Left
Coast Press.
Holman Jones, S. (2016). Living Bodies of Thought: The “Critical” in
Critical Autoethnography. Qualitative Inquiry, 22(4), 228–237.
Holman Jones, S. (2005). Autoethnography: Making the Personal
Political. In N. Denzin & Y. Lincoln (Eds.), Sage Handbook of
Performance Studies (pp. 763–791). New York, NY: Sage.
Holman Jones, S., Adams, T., & Ellis, C. (Eds.). (2013). The Handbook of
Autoethnography. Walnut Creek, CA: Left Coast Press.
Kafer, A. (2013). Feminist, Queer, Crip. Indianapolis: Indiana University
Press.
Langellier, K. M, & Bell, E. (2009). The Performance Turn: Poiesis and
Praxis in Postmodern Times. In J. W. Chesebro (Ed.), A Century of
Transformation: Studies in Honor of the 100th Anniversary of the Eastern
Communication Association. Oxford: Oxford University Press.
Madison, D. S. (2006). The Dialogical Performative in Critical
Ethnography. Text and Performance Quarterly, 26(4), 320–324.
xxiv SERIES EDITOR’S INTRODUCTION

McRuer, R. (2002). Compulsory Able-Bodiedness and the Queer/

Disabled Existence. In R. Garland Thomson, B. J. Bruggemann, &
S. Snyder (Eds.), Disability Studies: Enabling the Humanities. New York:
MLA Publications.
McRuer, M. (2006). Crip Theory: Cultural Signs of Queerness and the
Body. New York: New York University Press.
Pelias, R. (2014). Performance: An Alphabet of Performative Writing.
Walnut Creek, CA: Left Coast Press.
Sandahl, C. (2003). Queering the Crip or Cripping the Queer?:
Intersections of Queer and Crip Identities in Solo Autobiographical
Performance. GLQ: A Journal of Lesbian and Gay Studies, 9(1), 25–56.
Schalk, S. (2013). Coming to Claim Crip: Disidentification with/in
Disability Studies. Disability Studies Quarterly, 33(2).
Shoemaker, D. (2013). Autoethnographic Journeys: Performing
Possibilities/Utopias/Futures. In S. H. Jones, T. Adams, & C. Ellis
(Eds.), The Handbook of Autoethnography (pp. 517–537). Walnut
Creek, CA: Left Coast Press.
Spry, T. (2016). Autoethnography and the Other: Unsettling Power through
Utopian Performatives. New York, NY: Routledge.
 Chapter 1: Researcher Positioning
as Embodied Experience

I Always Knew…1
In one of my earliest memories I’m getting out of a car during the summer
to go shopping with my mother at Kmart, the only store with toys within
30 minutes of my house. I’m so excited. I stand, peeling my legs from the
vinyl front seat. It’s 1985 and a four-year-old sitting in the front seat with-
out a seatbelt is acceptable in rural Maine. The seat is slick from the sweat
that has pooled under me. I roll up the window per my mother’s instruc-
tion. The air inside the car is hot and thick when the windows are up so
I’m disappointed she won’t let me leave them down while we shop. If our
car ever had air conditioning it doesn’t work anymore.
Today I feel proud of how I look. I’m not wearing the androgynous
overalls that dominate my childhood wardrobe because my mother thinks
their loose fit and undefined waist conceal my irregular gait. It’s finally too
hot for them. Instead I have on white shorts with bows on the side and a
pink Minnie Mouse tank top my aunt bought me. My hair is swept into
two ponytails fastened by pink elastic bands. I feel pretty and airy so I’m
walking a bit straighter, more confident than usual. I catch the eye of a
woman holding her daughter’s hand. She’s staring at me sadly. She
­whispers something. My heart beats a little faster. I’m close enough to the
store to see my reflection in the glass door. At four I’m aware of my body,
how it feels to live my identity through it, and how culture responds to it.
I’m so very aware.

© The Author(s) 2018 1

J.-A. Scott, Embodied Performance as Applied Research,
Art and Pedagogy, Creativity, Education and the Arts,
https://doi.org/10.1007/978-3-319-63661-0_1
2 CHAPTER 1: RESEARCHER POSITIONING AS EMBODIED EXPERIENCE

Thirty-one years later I can still see my reflection in the large glass door
as I approached that Kmart. I’m lithe and tan from hours swimming in the
behind my house. I see my deep-set, dark eyes, and my grandmother’s
nondescript, average Lafredo nose. (From the way my father talks about
them, the Lafredo nose is preferable to the Malio or Tomassi noses in the
family.) My dark brown hair reflects the sun. I also see what the mother
and her daughter see. My back is slightly hunched, pushed forward to bal-
ance while walking with my feet facing each other. Looking down I see the
fresh purple scars snaking up my calves. I realize that the first operation
didn’t fix me. The doctors snipping and lengthening my heel cords
(Achilles tendons) to drop my feet to the ground hasn’t altered my abnor-
mality enough to compel people to notice my cute outfit before my gait.
The full leg casts, followed by walking casts and six months of physical
therapy, have eliminated the need for the clunky white braces that clutched
from my ankles to my knees. I was overjoyed to be rid of them and the
long socks that reduced chafing. It is only now that I realize that the
absence of the braces hasn’t changed my daily reality as much as I’d hoped.
My legs are still wracked with spasms that leave me screaming when my
muscles finally revolt against the constant tightening tremors throughout
the day. My appearance still attracts questioning, sad, and even repulsed
gazes. The body I live through matters. I know that.

The Role of the Stories We Live in the Research

We Do
I understood privilege, stigma, and marginalization before any of those
words were part of my vocabulary. I knew the ongoing visceral, collabora-
tive, and susceptible nature of identity and personal story before I knew
what the words “visceral,” “collaborative,” and “susceptible” meant. I
knew my understandings were inescapably dependent on my physical body
moving through and experiencing the world. While my impressions are
extremely personal, formed through my body’s interactions with others,
they are also highly collaborative, my understandings dependent upon an
ongoing struggle to comprehend meaning through my interactions with
others. Our culture is made possible through our lived experiences with
one another (Berry, 2012). And since identity and meaning surface through
interacting bodies, they are inescapably susceptible to change through
future interactions. For as long as I can remember, this understanding
inspired me to tell my stories to others and to listen to theirs. I wanted to
 THE ROLE OF THE STORIES WE LIVE IN THE RESEARCH WE DO 3

know how they lived identity, meaning, and understanding through their
bodies and to tell them how I lived them through mine. I believed (and still
do) that once we embrace our dependence on mortal bodies, our under-
standing’s dependence on our embodied interactions with others, and the
susceptibility of even deeply embedded meanings to be dismantled through
our body-to-body interactions, we can become more aware, open, and
empathetic to each other’s experiences. Openness and empathy can compel
us to resist fear and marginalization and fight for inclusivity and the valuing
of one another. This begins by listening to and telling stories. Storytelling
performance gives me hope for a safer world that supports and flexes
around rather than rejects and marginalizes our vulnerable bodies. That is
why I’m writing this book. It’s also why I’m a storytelling performance
scholar, teacher, and artist.
This is a critical autoethnographic novel of personal storytelling perfor-
mance as a pursuit of hyper-embodied positioning and social justice.
Autoethnographic writing allows a researcher to situate her body in relation
to others to comprehend cultural realities. It falls under the broader meth-
odological umbrella of autoethnography that links “the autobiographical
and personal to the cultural, social, and political” (Ellis, 2004, p. xix). Many
scholars have thoughtfully explored autoethnography as a methodology
(Bochner, 2012; Chang, 2008; Ellis & Bochner, 2000; Gingrich-Philbrook,
2006; Holman Jones, Adams, & Ellis, 2013). Boylorn and Orbe (2014)
give the succinct definition of autoethnography as “cultural analysis through
personal narrative” (p. 17). Analyses take on many forms, including cre-
ative nonfiction prose (see Ellis, 2004, 2009), performance scripts (see
Spry, 2011), and poetry (see Faulkner, 2014). Methodologically, the term
combines autobiography and ethnography, calling for the “turning of the
ethnographic gaze inward on the self (auto), while maintaining the out-
ward gaze of ethnography, looking at the larger context wherein self experi-
ences occur” (Denzin, 1997, p. 227). A critical frame to an autoethnographic
story attends to cultural power relations, recognizing how privilege, power,
and difference influence our experience and response in the world (Adams,
2011; Alexander, 2006; Denzin, 2014; Diversi & Moreira, 2009; Holman
Jones, 2005; Pelias, 2014; Poulos, 2013; Shoemaker, 2013; Spry, 2006,
2016; Toyosaki & Pensoneau-­Conway, 2013). As performance of daily life,
autoethnography is a reflexive performance of self, mapping how meanings
and understandings surrounding identity surface and are struggled over
through one’s lived, embodied experience. Critical autoethnographic sto-
ries not only uncover marginalization, stigma, and prejudice in our personal
4 CHAPTER 1: RESEARCHER POSITIONING AS EMBODIED EXPERIENCE

stories, but also look toward means to resist them. This is the focus of my
research, teaching, and performance of personal storytelling. In this chap-
ter I’ll explain the visceral, collaborative, and susceptible nature of personal
storytelling performance. These components extend from our encounters
in daily life, to qualitative research, to class learning objectives, to staged
productions for diverse audiences. Telling, listening, and interpreting sto-
ries enables human beings to share experiences, to access how life is lived
through bodies other than our own, and to pursue social justice through
striving to create a culture where all bodies are offered the opportunities to
reach their utmost potentials.

Our Bodies Perform for and with

One Another in Culture

Personal Storytelling Performance is Visceral

Storytelling is embodied (Langellier & Peterson, 2004). A personal story
is first lived through a body; identity and meaning surface through embod-
ied interactions in the world. Storytelling comes from bodies, dependent
on the lungs, vocal cords, tongue, and jaw muscles of the teller and the
eyes, ears, and/or facial muscles of the listener responding. I use the term
“visceral” because of its emphasis on sensations deep within the body.
Visceral describes the organs in our abdomens, the stomach and intestines,
our guts (Merriam-Webster, 2016). It also describes deep inward feelings,
strong reactions based on emotion and personal intuition rather than
intellect and reasoning. Visceral stems from the place where we feel hun-
ger and fullness, the sinking of dread and disappointment, the fluttering of
anxiety and attraction, and the swelling of hope and faith. The perfor-
mance of personal storytelling is inescapably physical and intuitive. As our
bodies move through the world, certain moments are made meaningful
and we react. Interactions evoke feelings that compel us to set off those
moments as worthy of reiteration. Storytelling is an instinctive compul-
sion. It is our way of performing who we are and what matters to us.
The attention to the visceral experience as a means of knowing stems
from existential phenomenology and its focus on the flesh, blood, bone,
and organs as the “foundations of consciousness” that engage with and are
“transformed by the world” (Sobchack, 2004, p. 2). An existential phe-
nomenological perspective emphasizes the body’s role in the creation of
personal and cultural truth, power, and identity, all of which are ­contingent
 OUR BODIES PERFORM FOR AND WITH ONE ANOTHER IN CULTURE 5

upon the living human tissues that allow us to experience our world—to
feel, see, hear, smell, and touch and to be felt, seen, heard, smelled, and
touched. As the founder of existential phenomenology Merleau-Ponty
(1964) articulates, “The enigma is that my body simultaneously sees and
is seen. That which looks at all things can also look at itself and recognize,
in what it sees, the ‘other side’ of its power of looking. It sees itself seeing;
it touches itself touching; it is visible and sensitive for itself” (reprinted in
Kearney & Rasmussen, 2001, p. 290). The body is at once the subject of
its story, the vessel for telling, and its own audience, experiencing and
reacting (both physically and emotionally) to the sound waves and physical
expressions it creates for and with others.
According to Langellier and Peterson (2004), telling a story “is not a
cognitive or reflective process for which the body is a container; before a
story is conceived or performed for an other it is lived through the body
as meaningful” (p. 9). Storytelling is inescapably visceral, instinctively per-
formed from within the body as a means for the body to understand itself
in relation to others within cultures through our ongoing performances of
identity in the world.
As I attend to the visceral nature of personal storytelling, my focus on
my body and its physical and emotional sensations intensifies. The feeling
of the cool keys of my laptop, the click of my nails against the keys, my
bare feet against the hardwood floor as I rock in a glider. I balance my
infant son, Nico, hot against my abdomen, just far enough away from the
keyboard so I can type while he sleeps. I am both content, enjoying Nico’s
soft breathing, and a bit anxious; my chest is faintly tight. There is a slight
worry as I glance at the clock on my computer and hope I can type one
more section before Tony and Vinny wake up from their naps. We are all
performing, all the time. Performance extends from our cultural stages
across our daily encounters. Our bodies in the world are performing our-
selves with, for, and in resistance to others. Without anyone watching me,
my daily performance of an academic mother during the summer session
continues. Right now, in solitude, I am my own audience, experiencing
and reacting physically and emotionally.
As a physically disabled person, I am perhaps more aware of my body’s
role in my experience and understanding of the world than most. My body
demands my attention. Across cultural encounters, the disabled person’s
body evokes others to ask for its story (Garland-Thomson, 2009; Mairs,
1996). Others desire to know how my body came to expose the fragility
of being fleshed. They ask me to explain “how it happened,” revealing that
6 CHAPTER 1: RESEARCHER POSITIONING AS EMBODIED EXPERIENCE

I attracted their gaze as “not normal.” Their curiosity gives me hope that
they realize that what happened to me could also happen to them. All of
our bodies are vulnerable. We know our mortality even if we choose to
ignore it, and this shared knowledge gives hope of connection. I offer
these two autoethnographies to highlight the visceral sensations of the
body we often ignore in our stories. I hope you feel them with me and
realize the visceral nature of your identity that forms through your body’s
sensations of the world and your ongoing responses to it.

 993: It Fell Out

1
I’m in Boston Children’s Hospital and I’m screaming in pain. I’m con-
vulsing, hysterical, and tied down with nylon bands. The bands are soft
and seamless, not cutting into me, but strong. I cannot move beyond their
three-inch length. I continue to push against them. Yesterday the doctors
performed a bone rotation. They peeled back the skin of my thighs and
pried my muscles to the side to saw my femur bones in half, rotate them
30 degrees, and nail them back together again. My last memories are the
prick of an IV, followed by a mask blowing air scented with strawberries as
I counted backward. Sometime during the night, the epidural which
numbed the pain fell out. Blood pooled behind me, but the nighttime
nurse thought I had started my period from the stress of the surgery and
figured she’d wait until I woke up to change the bed. She put a towel
behind me in the meantime. By the time they realized the epidural was out
and the blood was draining from my back, not from between my legs, the
pain medication had worn off. I’m small for my age and to go back up to
the necessary pain medication after it was abruptly cut off is dangerous. I
could go into shock. So they tie me to the bed so I don’t disturb my legs
in traction and can “ride” the pain until lower doses of alternative painkill-
ers can take effect. I am so aware of my body: the involuntary tremors that
come one after the other without any reprieve.
I’ll give you a quick medical lesson so you can stop wondering what
exactly is “wrong” with me: Spastic cerebral palsy results from damage to
the cerebellum, the area of the brain responsible for movement. My brain
perpetually sends signals to my leg muscles, instructing them to contract,
like others’ legs react if someone sticks them with a pin. These repeated
contractions are mostly undetectable to me as they happen, but they cause
tight, spastic muscles that have shortened to the point that they spin my
feet to face each other. When I was four, the doctors snipped and length-
ened my Achilles tendons to drop my feet to the floor in a two-phase
 OUR BODIES PERFORM FOR AND WITH ONE ANOTHER IN CULTURE 7

process. This is the third operation, and the one that is supposed to finally
give me a more “normal” gait by spinning my legs so that the contracted
muscles’ pulling turns them forward, not 30 degrees inward. I usually can-
not feel the repeated contractions throughout the day, but now, with two
bones sawed in half, each minor contraction is excruciating. I scream for
hours before falling asleep from the exhaustion and the medication that
has finally built up enough to quiet the pain to an angry murmur.
I still remember that pain clearly 23 years later. The 48 hours following
that surgery were the worst pain I’ve ever felt. As I remember, my toes
curl, I cringe, my son moves with my tightening. I am so aware of my
body’s sensation. The inescapably visceral nature of my body is vivid,
encompassing all of my attention.

 013: They Won’t Go Wider

2
I arrived at the hospital three hours ago. Before that, the familiar dull pain
in my back had increased in intensity to the point that I woke up my hus-
band, Evan. We cradled a sleepy toddler to the car at 2:00 AM to drop him
off at our friends’ house before heading to the hospital. By the time we
checked in I had dilated to six centimeters. I breathe through the pain.
This is my second baby. I deliver fast and the reprieve I get between con-
tractions makes childbirth a manageable experience compared to the oper-
ation I had at 12. Plus, I don’t believe in epidurals. They fall out. It took
a five-minute exchange for me to agree to them inserting a needle into my
wrist to drip a saline solution that burns even though it isn’t supposed to.
Despite how it “should” feel, my body responds negatively. I hate all nee-
dles, not just epidurals, but it’s procedure, and the contractions are get-
ting close enough that it’s not worth arguing about. I’ll make them take
it out once Vinny, my second son, gets here.
As I enter the dimly lit delivery room, I see the labor tub is filling and
I wonder if I’ll get to use it or not. The hospital doesn’t allow for water
births, only water labors, and I have a feeling the baby is coming soon, too
soon to get into the tub. I’m right. The tub is only halfway full when my
water breaks. It comes in a stream that feels as though a warm garden hose
is running down my leg for three seconds. Then it stops.
“My water broke,” I tell Evan through gritted teeth, gripping the bed
through a contraction. I’m on my side since most of the pain is in my
back.
“I’ll call the nurse.” Evan presses the black button above my bed that
awakens the intercom. There’s static.
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