Speaking for Ourselves
Conversations on Life, Music, and Autism
Michael B. Bakan
with Mara Chasar, Graeme Gibson, Elizabeth J. Grace, Zena Hamelson, Dotan Nitzberg, Gordon Peterson, Maureen Pytlik, Donald Rindale, Amy Sequenzia, and Addison Silar
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Library of Congress Cataloging-in-Publication Data
Names: Bakan, Michael B. author. | Chasar, Mara.
Title: Speaking for ourselves : conversations on life, music, and autism / Michael B. Bakan with Mara Chasar [and nine others].
Description: New York, NY : Oxford University Press, [2018] | Includes bibliographical references and index.
Identifiers: LCCN 2017034412| ISBN 9780190855833 (cloth) | ISBN 9780190855864 (oxford scholarly online) | ISBN 9780190865573 (companion website)
Subjects: LCSH: Autistic musicians—Interviews. | Music—Psychological aspects.
Classification: LCC ML3838 .B18 2018 | DDC 780.87/4—dc23
LC record available at https://lccn.loc.gov/2017034412
9 8 7 6 5 4 3 2 1
Printed by Sheridan Books, Inc., United States of America
To Megan, my wife, who showed me how to love
To Isaac, my son, who showed me how to be calm
And to Leah, my daughter, who showed me how to sing.
To Paul, my father, who gave me the gift of curiosity
To Laura, my sister, who always keeps me humble
And to Joel, my brother, who taught me how to groove.
To Rita, my mother, who made me a writer
To Susu and Rosie, for making me laugh
And to Mark, my inspiration, who knows who he is.
CONTENTS
List of Figures ix
About the Companion Website xi
Companion Website Contents xiii
Acknowledgments xv
Prologue: Autumn, 2003 xix
1. Introduction 1
2. Zena Hamelson 20
3. Mara Chasar 30
4. Donald Rindale 40
5. Elizabeth J. “Ibby” Grace 68
6. Dotan Nitzberg 94
7. Graeme Gibson 120
8. Maureen Pytlik 138
9. Gordon Peterson 168
10. Amy Sequenzia 200
11. Addison Silar 218
12. Conclusion: “Living with Autism Shouldn’t Be Hard” 233
References Cited 239
Additional Reading 247
Index 253
FIGURES
2.1 Zena Hamelson 20
2.2 The Artism Ensemble rehearsing in the E-WoMP in 2013, Council on Culture and Arts (COCA) Building, Tallahassee, Florida 22
2.3 The Artism Ensemble in concert at the Tallahassee Museum, 2011 [Photo credit: Kent Hutchinson] 27
3.1 Mara Chasar [Photo credit: Lia Chasar] 30
4.1 Evoking Donald Rindale [Photo credit: Michael Broyles] 40
5.1 Elizabeth J. “Ibby” Grace [Photo credit: Meriah Nichols] 68
6.1 Dotan Nitzberg [Photo credit: Michael Broyles] 94
7.1 Graeme Gibson [Photo credit: Michael O’Shea] 120
8.1 Maureen Pytlik [Photo credit: Alan Dunlop] 138
9.1 Two of Gordon Peterson’s favorite instruments 168
10.1 Amy Sequenzia 200
11.1 “Cupcake,” by Addison Silar 218
ABOUT THE COMPANION WEBSITE
www.oup.com/us/speakingforourselves
Username: Music1
Password: Book5983
Oxford University Press has created a password-protected website to accompany Speaking for Ourselves: Conversations on Life, Music, and Autism. Video and audio recordings of musical and spoken- word performances discussed in the text, as well as supplementary photographs, videos, and links to further online resources, may be accessed via this site. Readers are encouraged to take advantage of these additional resources. Examples available online are indicated in the text with Oxford’s symbol .
COMPANION WEBSITE CONTENTS
2.1 (audio) “Oh That!” by Zena Hamelson, performed by the Artism Ensemble (2012)
3.1 (video) “Purple Eggs and Ham,” by Mara Chasar, performed in rehearsal by the Artism Ensemble (2013)
4.1 (text) Links to music discussed in the chapter
5.1 (audio) “Codependence Song”, composed and sung by Elizabeth J. “Ibby” Grace
5.2 (audio) “Johnny I Hardly Knew Ya,” traditional Irish song sung by Elizbeth J. “Ibby” Grace
6.1 (video) “How to Teach Piano to People with Asperger” (lecture), by Dotan Nitzberg; presented at the 2012 World Piano Teachers Association international conference in Novi Sad, Serbia
6.2 (video) Franz Liszt, Gnomenreigen (Dance of the Gnomes), performed by Dotan Nitzberg
6.3 (video) Edvard Grieg, Piano Sonata in E Minor, Opus 7, performed by Dotan Nitzberg
6.4 (video) Franz Schubert, “Wanderer” Fantasy, performed by Dotan Nitzberg
7.1 (photo) Electric bass guitar built by Graeme Gibson and Daniel Ouellet
7.2 (photos) Graeme Gibson photo gallery: birds
7.3 (photos) Graeme Gibson photo gallery: world music instruments (from his collection)
7.4 (audio) Improvisation on Greek bouzouki by Graeme Gibson
7.5 (photo) Female red- winged blackbird (Agelaius phoeniceus), photographed by Graeme Gibson
8.1 (video) Leonard Bernstein, Sonata for Clarinet and Piano, Second Movement (Andantino—Vivace e Leggiero), performed by Maureen Pytlik (clarinet) and Nick Rodgerson (piano) at the First Unitarian Congregation of Ottawa. Videographer: Tim Pytlik.
9.1 (audio) “Sisyphus,” by Gordon Peterson
10.1 (text) Email from Amy Sequenzia with links to Hugh Dillon videos and Amy’s original poetry, etc.
11.1 (text) Addison Silar’s music playlist
11.2 (audio) “The Place Your Heart Desires” (poem), written and recited by Addison Silar
ACKNOWLEDGMENTS
This book could never have come to be without the extraordinary commitment and contributions of my ten collaborators: Mara Chasar, Graeme Gibson, Ibby Grace, Zena Hamelson, Dotan Nitzberg, Gordon Peterson, Maureen Pytlik, Donald Rindale, Amy Sequenzia, and Addison Silar. My heartfelt thanks goes out to all of you and to your wonderful families and networks of support, among whom I will mention Susan, Barry, Layenie, Adriana, Lia Chasar, Mike Chasar, Jill Huxtable, Ven Sequenzia, Nurit and Benny Nitzberg, Deborah and Bill Gibson, and Mike and Terri.
To Suzanne Ryan, editor extraordinaire, you are an author’s dream. Thank you for your unwavering support of this project over the course of many years now, and for the gluten- free fried chicken in Austin too! I am deeply indebted to the three anonymous reviewers for the Press who weighed in on the manuscript at various stages. Your insights and generosity have been invaluable in my efforts to bring this work up to the level of its potential. I am also grateful to the excellent editorial and production team at Oxford University Press who worked with me on this project, and especially to Jamie Kim, Norm Hirschy, Damian Penfold, and Patterson Lamb for their various forms of assistance.
My colleagues and students in the College of Music at Florida State University have been supportive, helpful, and inspirational in ways beyond telling. Special shout-outs are due to all of my friends in the Musicology area—Denise Von Glahn, Douglass Seaton, Frank Gunderson, Charlie Brewer, Sarah Eyerly, Michael Broyles, and Meg Jackson—as well as to Patricia Flowers, Jane Clendinning, Alice- Ann Darrow, Wendy Smith, Lauren Smith, Laura Gayle Green, Bill Fredrickson, Jennie Carpenter, Christian Dauble, Tiawana Meeks, and Danielle Davis.
Megan Bakan, Alexandria Carrico, Carrie Danielson, Jeff Edelstein, Mayna Tyrrell, and Nikki Schommer devoted countless hours to reading and re-reading the manuscript and provided important criticisms,
corrections, and recommendations. Big thanks and big hugs go out to all of you, with some extra ones reserved for Nikki, who additionally prepared the index and reference lists, a huge undertaking.
The Artism Ensemble and the Music-Play Project figure less prominently in this book than they might, but that doesn’t mean that my debt to the legions of people involved in those programs is any the less. Thanks to the Artism gang: E.S., NICKstr, Coffeebot, Mara Chasar, Zena Hamelson, Carlos Odria, Mia Gormandy, Vivianne Asturizaga, Ramin Yazdanpanah, Carlos Silva, Jade Stagg, Brian Hall, Channing Griggs, Haiqiong Deng, Elyse Marrero, Michelle Jones, Chris Wilkey, Matthew Martin, Lia and Mike Chasar, Mary and Larry Coffee, Sophie Wacongne- Speer and Kevin Speer, Rick and Stefanie Voss, Leo Welch, Ryan Scherber, Rachel Hurd, Bethany Atwell, Peggy Brady and the good people at COCA, Rabbi Jack Romberg and Temple Israel, John Fitzgerald and Remo, Inc., the National Endowment for the Arts, Jennifer Hoesing and the Florida Department of State’s Division of Cultural Affairs, the Tallahassee Museum, the Society for Disability Studies, and Sue and Barry.
To list all those who participated in the Music-Play Project would take more time and page space than any of us can afford, so it will have to suffice for me to just send a big “Thank you!” to the thirty children and families and everyone else that took part, though I’d be remiss if I didn’t give a special nod to my friend and former colleague Ben Koen, the co- founder of that program.
Some materials in this book have appeared in previous publications and I am grateful to the editors and publishers of those journals and books for granting me reprint permissions. Special thanks are due to Stephen Stuempfle and Ellen Koskoff at Ethnomusicology, Marcia Ostashewski and Heather Sparling at MUSICultures, David G. Woods, Victor Fung, and Robbie Gunstream at College Music Symposium, Simone Krüger Bridge and the Journal of World Popular Music at Equinox Publishing, and Susan Hadley and Rune Rolvsjord at Voices: A World Forum for Music Therapy, not to mention Oxford University Press for permitting reprints of materials from my chapters in the Oxford Handbooks of applied ethnomusicology and music and disability studies. Thanks to the editors of those volumes as well— Svanibor Pettan, Jeff Todd Titon, Blake Howe, Stephanie Jensen-Moulton, Neil Lerner, and Joseph Straus— for their guiding hands in those works and in turn the present one. And speaking of Joseph Straus, he has been a true inspiration and mentor to me in this work. Thanks, Joe!
A great many other people have contributed to this project in ways to numerous to specify. Beyond those I have surely forgotten to acknowledge here (to whom I apologize), they include Eleanor Feierstein, Tim
[ xvi ] Acknowledgments
Rice, Rebecca Jenkins, Derryck Smith, Pauline Whitehead, Danny Bakan, Jonnie Bakan, Kent Hutchinson, Carolyn Ramzy, Randy Raine-Reusch, Cal Melton, Keith Ivey, Sherry Simpson, Henry Hall, Mary Ann Dixon, Terry Wyatt, Peggy and John Benton, Iris and Mark Palazesi, William Cheng, Zach Richter, Jeff Packman, Anna Hoefnagels, Kathy Armstrong, Harris Berger, Louise Wrazen, Kenneth Aigen, Aaron Fox, Kayleen Justus, Karen Wacks, Eli Newberger, Brita Heimarck, Lindee Morgan, Amy Wetherby, Andrew Killick, Gerd Grupe, Kendra Stepputat, Michael Rohrbacher, Larry Witzleben, Elizabeth Fein, Clarice Rios, Dawn Prince, Richard Grinker, Tom Weisner, Elinor Ochs, Olga Solomon, Laura Sterponi, Timothy Cooley, Gregory Melchor-Barz, Theresa Allison, Neil Lerner, Andrew Dell’Antonio, Jennifer Iverson, Alex Lubet, Emily Morris, Sally Kahn, Annika Bowers, Allegra Stout, Zach Richter, and Rachel Goff.
Finally, to Megan, Isaac, and Leah: Thank you for letting me write this book. I couldn’t have done it without you. I love you more than life itself.
PROLOGUE
AUTUMN, 2003
We are having dinner at Mark’s house, but Mark is nowhere to be seen.
Mark is three years old.1 He is a relative of mine (his father Scott and I are cousins) and has recently been diagnosed with an autism spectrum condition called Asperger’s syndrome.2 Having visitors to the house makes Mark anxious, especially when they’re people he doesn’t know, like my new colleague Benjamin Koen, who is here too with his wife Saba and their baby daughter Naseem.
Mark is much happier alone in his bedroom at the back of the house than dealing with all the hubbub of a dinner party, and his parents realize that it makes more sense to let him have his quiet time than force him to “be social.” Sure, it would be nice if he came out and joined us, his mother Jenny tells us, but we all know that’s not likely to happen.
Dinner is over, and while the others indulge in some wine-infused cleaning up, Ben and I sit down to drum together. We both teach ethnomusicology at Florida State University in Tallahassee—I’ve been on the faculty for about a decade, Ben for a little over two weeks—and we are both experienced percussionists. Scott is also a musician, and he and Jenny have a house full of drums: drums from Cuba, Brazil, Ghana, China, Indonesia— from all over the place really. Ben is playing a West African– style djembe; I’m on Balinese kendang. This is the first time that we’ve ever played together and the groove is strong right from the start—our own thing, but kind of like a Cuban rumba guaguancó.
My eyes are shut, as they usually are when I drum, and the music is taking me away. Then I feel a light tap on my leg. It brings me back into the room, and there, sitting on the floor beside me, is Mark. After more than an hour alone in his bedroom, he has come to join us, drawn out by the sound of the drums. Mark looks me right in the eye— something he
rarely does— then casts his gaze downward at a pair of bongó drums resting on the floor between us. He looks back up at me, as though to ask, “Can I play too?”
I smile and nod encouragingly, drumming all the while. Mark jumps right in. He immediately shifts the groove, taking Ben and me in a new rhythmic direction. We follow him there with excitement. Mark’s eyes light up. He changes the groove again; we go there too and he smiles radiantly.
Then Mark begins to sing. His voice is strong and clear, intoning words in a language of his own invention, a language he calls Skoofie.
We are reveling in the beauty and magic of the moment when a sudden cry cuts through the room, bringing our musical ascent to a screeching halt. It’s the baby, Naseem. Eight o’clock has arrived and she’s done for the night.
Minutes later, the Koens are off in their minivan, headed for home. Mark has disappeared, back to his bedroom, I suppose. I put away the drums and take a seat next to my wife Megan on the couch. Scott and Jenny join us after finishing up in the kitchen. Soon, Mark comes back into the living room—another surprise in an evening of many. He walks over to Megan and me and starts talking to us, but not like he ever has before. He usually carries a lot of tension in his body and moves stiffly, awkwardly; but now he looks loose and relaxed. He usually speaks to us in Skoofie, and on those rare occasions when he does use English he delivers his words in a monotone, with little apparent intention of actually communicating; now, though, he is speaking English, lucidly and expressively, and he’s emphasizing his words with illuminating hand gestures and body language. His parents, especially Scott, look to be as surprised by the change as I am.
Yet strangely, I’m not really able to hear what Mark is saying—not the meaning of the words anyhow— for I am transfixed by their musicality, their poetry, the choreography of their presentation. And I am thinking to myself: what has happened to this child, what has changed, and what did that brief but profound musical encounter of just minutes ago have to do with it all?
But as I am focused on these thoughts, Mark shuts down. He stops talking, abruptly turns away, and walks back to his room. And when I next see him only a couple of days later, he’s pretty much his old self again—a little bit stiff, a little bit anxious, not so keen to communicate.
After our drumming session, I have a restless night’s sleep. I keep waking up, thinking about the events of the evening, wondering what to make of it, where to go from here. Then it comes to me, at about 3:00 in the morning, and I continue to stir it around in my head until the earliest time I can politely call Ben, at 8:00. I tell him I have an idea, an idea for
a music-and-play project for children on the autism spectrum and their families, one that would essentially recreate the conditions of our drum jam with Mark the night before, and hopefully with similarly wondrous results.3
That vision eventually becomes a reality, first as a program called the Music-Play Project (2005–2009),4 later as a neurodiverse music group named the Artism Ensemble (2011–2013).5 It ultimately morphs into something very different as well, a new project spanning the years 2011–2016 that centers on my conversations during that period with ten fascinating individuals. All of these people have two things in common: a life in which music figures prominently and an autism spectrum diagnosis. In this book, they tell their stories, in their own words and through the conversations in which we shared.
NOTES
1. Mark is a pseudonym, as are the names used for his parents. Certain other details in this account have been adjusted as well to protect the anonymity of Mark and his family.
2. In earlier editions of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (see, for example, American Psychiatric Association 2000), Asperger’s disorder, also known as Asperger’s syndrome, was identified as a separate diagnosis within the larger diagnostic category of autism spectrum disorder (ASD). Three other forms of ASD—autistic disorder, childhood disintegrative disorder, and pervasive developmental disordernot otherwise specified (PDD-NOS)— were likewise separately identified. The fifth edition of the Manual, DSM-5 (American Psychiatric Association 2013), brought major changes, subsuming all four categories of autism diagnosis under the single diagnostic classification of ASD: autism spectrum disorder. Thus, in the words of John Donvan and Caren Zucker, “Asperger’s as a diagnosis was killed off” by the APA in DSM-5 (Donvan and Zucker 2016, 528). This change has generated controversy and ongoing debate in many quarters (Silberman 2015, 381–468; Donvan and Zucker 2016, 527–33), and within the autistic self-advocacy, neurodiversity, and disability studies communities, a significant distinction between Asperger’s and other kinds of autism is frequently maintained. The distinction is an important one for the majority of my collaborators on this project, and for that reason we retain the status of Asperger’s syndrome as an identifiable autism spectrum condition throughout this book, its disappearance from the current edition of the DSM notwithstanding.
3. It is important to note that while the musical experience recounted here had a lasting impact on me, both personally and professionally, this was by Mark’s own report not the case for him. In September 2013, some ten years after our first time drumming together (there have been many others since then), I had occasion to ask Mark what he remembered about that evening and whether it had been significant for him. He replied that he didn’t remember much but knew
about what had happened because he had heard me talk about it. He then added, “It wasn’t really that important to me because I’m not that into music anyhow” (personal correspondence, September 18, 2013).
4. There are several publications on the Music-Play Project (Bakan 2009; Bakan, Koen, Bakan, et al. 2008; Bakan, Koen, Kobylarz, et al. 2008; Koen et al. 2008). A substantial literature exists in the area of medical ethnomusicology (Allison 2010; Barz 2006; Barz and Cohen 2011; Edwards, Melchor-Barz, and Binson 2015; Koen 2008).
5. Studies of the Artism Ensemble have yielded a series of publications (Bakan 2014a, 2014b, 2014c, 2015a, 2015b, 2016a, 2016b). Representative publications from applied ethnomusicology are varied in both topical focus and approach (Dirksen 2012; Harrison 2012; Harrison, Pettan, and Mackinlay 2010; Pettan and Titon 2015; Titon 1992; Van Buren 2010).
