Troubling Disability: Experiences of Disability In, Through, and Around Music by Jesse Rathgeber A Dissertation Presented in Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy Approved November 2018 by the Graduate Supervisory Committee: Sandra Stauffer, Chair Roger Mantie Margaret Schmidt Ted Solís Evan Tobias ARIZONA STATE UNIVERSITY May 2019 ABSTRACT The purpose of this study was to trouble existing conceptions of disability that ground music education literature and practice. I sought plausible insights into how disability is experienced in, through, and/or around music by participants who are disabled persons/persons with disabilities (DP/PwD). Insights gained might allow readers to complexify and trouble taken- for-granted assumptions about disability. Questions included: (a) How do participants experience disability in, through, and around music? (b) What plausible insights related to disability can be gained by attending to participants’ experiences of disability in, through, and around music? (c) What plausible insights related to inclusion can be gained by attending to participants’ experiences of disability in, through, and around music? The inquiry approach was grounded in Buberian relational ontology, phenomenology, interactional theories of disability, and narrative. Seven DP/PwD participated in this study: (a) Erica, a 14-year-old diagnosed with a developmental disability of unknown etiology; (b) Duke, a drummer diagnosed with Williams syndrome; (c) Birdie, an abstract visual artist with epilepsy who used music to inform her art; (d) Daren, a b-boy/breakdancer diagnosed with Tourette syndrome, (e) Sienna, a legally blind social work college student who played banjo in a music therapy-based bluegrass band and participated in musical theatre; (f) Ice Queen, an undergraduate flute player recently diagnosed with Attention deficit/hyperactivity disorder (ADHD); and (g) Culann, an adult counselor and music listener with ADHD and mood disorders. Data generation included conversational interviews, observations, artmaking, and serendipitous data. Data co-generated with participants were crafted into narratives of their lifeworlds, including description of their experiences with disability in, through, and around music and in other aspects of their lives. An envisioned conversation among all participants demonstrates the shifts and complexities in the meanings of disability and unpacks different ways participants describe and understand disability and the myriad roles that music plays in their lifeworlds. The final chapter of the study offers discussions and suggestions regarding thinking about and ii approaching disability (i.e., interactional theories, intersectionality, and identity), inclusion (i.e., belonging, suggestions by participants, and anti-ableist pedagogy), and research/writing. iii DEDICATION This document is dedicated to all disabled persons/persons with disabilities. Your experiences matter. Your stories matter. Your musics matter. Your voices matter. You matter. iv ACKNOWLEDGMENTS First, thank you to Erica, Duke, Birdie, Daren, Sienna, Ice Queen, and Culann who opened up their lives, their identities, and themselves to me. It was an honor to be with you all, to come to know you all, and to embrace the world with you all. I hope that your stories and ideas might help other music teachers create more open and meaningful spaces for all people; I know that what I have learned from you all has greatly shaped my own practice. I also want to acknowledge all of the students/participants, faculty, and staff in places where I have worked as a music teacher/facilitator: Lee School (Springfield, IL); DeLand-Weldon CUSD 57; Country Meadows, Willow Grove Kindergarten and Early Childhood Center, and everyone at Killdeer Countryside School District 96; Arizona State University; Higher Octave Healing (Tempe, AZ); and James Madison University. I love/loved learning with and from you. I would also like to thank some very special teachers whose ways of being are all over this document, including: Loretta Campbell, Kelly Donahue Dimidik, Sam Reese, Greg DeNardo, Joe Grant, Maud Hickey, Janet Barrett, Peter Webster, Carlos Abril, Jill Sullivan, Evan Tobias, Marg Schmidt, Roger Mantie, and Ted Solís. Sandy Stauffer, I would not have come out West to study and surely would not have stuck through the degree or this project without you. Thank you for constantly challenging me, for listening to me, for reminding me to listen, for talking with me, and for encouraging me to be brave and try new things. Kim McCord, thank you for opening up so much about disability scholarship to me through your class, our chats, and our projects together. Alice Hammel, I know you have never been my teacher of record for a class, but your work and your continued friendship teaches me so much. Also, thank you to those whose scholarship taught me, including but not limited to: Adam Patrick Bell, Tuulikki Laes, Joe Abramo, Warren Churchill, Juliet Hess, Judith Jellison, Alex Lubet, Petra Kuppers, Neil Marcus, and Martin Buber. So many friends have supported me through my work on this document. Shayne Hamm, you may have passed away long ago but your spirit still moves through me every day and I know there is some of you in this document. Emmett O’Leary, thank you for being the big research v brother that I did not know I needed and for starting me down the road of phenomenology. Ryan Bledsoe, I so appreciate your playfulness and how you encourage me to play as a writer, researcher, educator, and human. Isaac Bickmore, thanks for being a constant collaborator and friend. Austin Showen, I owe you so much for challenging me and constantly being ready to jam and chat. Tim Nowak and Jared O’Leary, thank you for pushing me to think about different things and also for calling me out when I get too pretentious. Also, a big thank you to all of the ASU doctoral student community with whom I interacted during my time on campus, including, but not limited to: Soyeon Kang, Joyce McCall, Nathan Johnston, Sarah Minette, Tavious Peterkin, Corrie Box, Elizabeth Bucura, Vinny Brancato, Emily Schwartz, Yousef Alsayegh, Nathan Botts, and Hyung Seok Kim. Outside of ASU, Dave Stringham, you deserve a special thank you. You have supported me, been an informal mentor and co-provocateur, and cooked up new ways of opening up music and art education to underserved communities with me: thank you for all you have done and continue to do. Thank you to all of the Rathgebers, Sheppards, Rykaczewski, and Bylinas. Mom and Dad, you will never know how grateful I am to have such loving and supportive parents who nurtured my musical life, my curiosity, and my empathy for others. I love you and thank you for all you have sacrificed to help me explore my own path. To Jon, Susan, and Molly Kanner, thank you for being my “logical family,” people I can always turn to for artistic and personal inspiration. Thank you to our pets, current and past, even though none of them can read: Simone de Beauvdog and Judith Barkler (dogs); Ravi, Lola, and Suni (chinchillas); and Martin Bubler (beta fish), thank you for the love you give; know that I owe you my life. Finally, Kasia Rathgeber, my loving wife and best friend, this is as much your document as it is mine. I could not have started, sustained, or completed this journey without you and all that you have done. You support me in ways that I cannot fathom, in ways that I might never fully understand. Your empathy and care for all people is endlessly inspiring and endlessly educative. I am in awe of you for so many reasons. Thank you and know that I love you vi TABLE OF CONTENTS Page LIST OF TABLES ………………………………………………………………………………………... xi LIST OF FIGURES ……………………………………………………………………………………… xii CHAPTER 1. AN INTRODUCTION …….………………………………………………………………………...1 Purpose Statement and Research Questions .................................................................... 2 Clarification of Vocabulary .................................................................................................. 3 DP/PwD. ...................................................................................................................... 3 In, Through, and Around Music. .................................................................................. 4 Outlining a Rationale .......................................................................................................... 4 My Experiences of Disability - Trigger Warning. .......................................................... 5 Problematizing Disability in Music Education research. .............................................. 9 Problematizing Inclusion in Music Education. ........................................................... 11 Overview of the Document ............................................................................................... 24 2. DIALOGUE WITH LITERATURE …….………………………………………………………… 26 Disability in Disability Studies Literature ........................................................................... 27 Impairment, Disability, and Disablement. .................................................................. 27 Individual-Focused Conceptions of Disability. ........................................................... 29 Social-focused Conceptions of Disability. .................................................................. 35 Interactional Conceptions of Disability. ...................................................................... 45 Summary. .................................................................................................................