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    What It Means to Be Literate: A Disability Materiality Approach to Literacy after Aphasia
    What It Means to Be Literate: A Disability Materiality Approach to Literacy after Aphasia
    What It Means to Be Literate: A Disability Materiality Approach to Literacy after Aphasia
    Ebook251 pages3 hours

    What It Means to Be Literate: A Disability Materiality Approach to Literacy after Aphasia

    By Elisabeth L. Miller

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    LanguageEnglish
    PublisherUniversity of Pittsburgh Press
    Release dateNov 1, 2022
    ISBN9780822988953
    What It Means to Be Literate: A Disability Materiality Approach to Literacy after Aphasia

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      Book preview

      What It Means to Be Literate - Elisabeth L. Miller

      PITTSBURGH SERIES IN COMPOSITION, LITERACY, AND CULTURE

      DAVID BARTHOLOMAE AND JEAN FERGUSON CARR, EDITORS

      WHAT IT MEANS TO BE LITERATE

      A DISABILITY MATERIALITY APPROACH TO LITERACY AFTER APHASIA

      ELISABETH L. MILLER

      UNIVERSITY OF PITTSBURGH PRESS

      Published by the University of Pittsburgh Press, Pittsburgh, Pa., 15260

      Copyright © 2022, University of Pittsburgh Press

      All rights reserved

      Manufactured in the United States of America

      Printed on acid-free paper

      10 9 8 7 6 5 4 3 2 1

      Cataloging-in-Publication data is available from the Library of Congress

      ISBN 13: 978-0-8229-4723-3

      ISBN 10: 0-8229-4723-4

      Cover art from freepik.com

      Cover design by Melissa Dias-Mandoly

      ISBN-13: 978-0-8229-8895-3 (electronic)

      For the participants in this study who so generously shared their stories, time, and insights.

      CONTENTS

      Acknowledgments

      INTRODUCTION. What Disability and Literacy Mean Together: Ableist Violence and a Disability Materiality Approach to Literacy

      CHAPTER 1. Centering Communicative Disability and Communicative Access in Literacy Research

      CHAPTER 2. Feeling Less than Literate: The Material Consequences of a Normate Template

      CHAPTER 3. Embodying Literacy: From Compulsory to Complex

      CHAPTER 4. Exceeding Ableist Literate Norms: Toward Literacy-Disability Ecologies

      CONCLUSION. What Disability Materiality Means for Approaches to Literacy

      APPENDIX A. Participants’ Chart

      APPENDIX B. Life History Interview Script

      Notes

      Works Cited

      Index

      ACKNOWLEDGMENTS

      It is perhaps a cliché to say so, but that does not make it any less true: it is an exceptionally difficult task to acknowledge all of the support that has sustained this project—from its first inklings, to the interviews that formed it, to all of the stages of its composition. There is no way to adequately thank the participants in this study. It has been one of the greatest gifts of my professional and personal life to have had the chance to listen to, stand by, engage with, laugh with, and learn so much from them. They welcomed me into their homes and into memories and experiences of reading and writing across their lives. They shared pumpkin cake, sandwiches, homegrown tomatoes, lemonade, and directions out of town (to a directionless person like me). I owe a special thanks to the aphasia writers’ group, which was one of the best parts of my week for five years. From all of the participants, I’ve learned so much about writing, humor, aphasia, kindness, language, communication, and friendship. I am so very grateful.

      I want also to thank Heather Krug and Dana Longstreth for being such open, generous, giving colleagues, for teaching me so much about what it means to be a caring, communicative professional, and for being so willing to try out an uncharted interdisciplinary collaboration. Thank you also to mentors and colleagues at University of Wisconsin–Madison, especially Kate Vieira, who believed in this project unreservedly from the beginning. Also thanks to Morris Young, Christa Olson, Jenell Johnson, and Jim Brown for their engagement with this project and long-standing encouragement of it—and of me. I was fortunate to benefit from the kindness and intellectual rigor of too many colleagues at UW–Madison to name, but I want to note the excellent camaraderie of Rubén Casas, Elisa Findlay, Annika Konrad, Nancy Reddy, Neil Simpkins, and Sharon Yam. I also want to note the particular time, support, and insights offered by Stephanie Larson and Kathleen Daly at various points in this project. And to Rebecca Lorimer-Leonard for always serving as such a powerful model and mentor in qualitative literacy work. A deep and special thanks to Brad Hughes, for his tireless mentorship and support, which has been absolutely foundational in my development as a writing studies professional.

      At the University of Nevada, Reno, I am very grateful to have the chance to work with such supportive colleagues. I owe a particular thanks to Cathy Chaput for her always steady, sharp, and generous guidance, as well as Katherine Fusco, Sara Kersten, and Jess Gallo for their writing camaraderie. Also thank you to rhetoric and writing studies folks Jim Webber, Maureen McBride, Anushka Peres, Melissa Nicolas, Lynda Olman, Bill MacCauley, Jane Detweiler, and Todd Ruecker for their friendship and modeling of what it means to be an excellent colleague. Thanks, especially, to Chris Mays, a wonderful colleague and friend (along, of course, with Sam Buchanan). And to Alissa Surges for her constant kindness, good humor, and friendship.

      This book would certainly not exist without the kindness of Stephanie Kerschbaum, whose encouragement and true modeling of what it means to be a supportive mentor and colleague in this field is unparalleled. I have also benefitted greatly from the enthusiasm, collaboration, and guidance of Sushil Oswal, Lilly Campbell, and Kaia Simon—who read, responded to, and encouraged parts of this project. Of course, I also want to thank the anonymous reviewers and the excellent editors at University of Pittsburgh Press, including Josh Shanholtzer and series editors David Bartholomae and Jean Ferguson Carr. It has been an absolute privilege to have your support for this project and your guidance in strengthening it.

      Thank you also to Megan Adams, Alison Moore, and Margie Judd for help with transcription but also for enthusiasm and engagement with this project, which sustained it more than they know. Turning to my family, I want to thank Maggi for bringing such joy, encouragement, and lovely friendship to some of the most challenging patches of this project. And to Sharon for her always kind interest, enthusiasm, and support.

      To my sister Kim, for a million hours of friendship, cheerleading, and relentless support on my behalf: she is a constant ally and companion, for whom I cannot possibly express my full gratitude. Particular thanks, also, to my niece Meagan for joining us and making worktime so fun that it always seems like the same thing. Thanks to my sisters Chris, Steph, and Cyndi, and my brother Mike, for their friendship and care (and to Chris, in particular, for making such a point of checking in on me and my progress on this project). Deep gratitude goes to my mother who, in the smallest and largest of ways, inspired this project—and not just from ties to stroke and aphasia. Her humor, intelligence, commitment to my education above all things, and humbling belief in me in all things, has made so much possible. Thank you from my core for teaching me again and again a thousand ways of listening, hearing, and engaging with the world. This project has always been, in its way, because of, and for, you.

      A final and insufficient thank you to Chris: for all of the brain-storming, discussing, hashing out, and rehashing of this project. For all of the patience and the well-timed collegial pushes here and there. His sharp and integrative thinking has made this project so much stronger—and his humor and enduring care and kindness makes everything so much richer every day.

      INTRODUCTION

      WHAT DISABILITY AND LITERACY MEAN TOGETHER

      ABLEIST VIOLENCE AND A DISABILITY MATERIALITY APPROACH TO LITERACY

      I begin, as a way of opening space for the questions of this book, with two scenes: scenes that bring to light the clashes, conflicts, contrasts, and complications that arise when disability and literacy intersect, scenes that get at some of the many complexities of what disability and literacy are perceived to mean together—and of what, in fact, disabled people do with literacy. These scenes are public and personal, pointing to the complex micro and macro factors nested within all literacy practices, identities, and politics.

      On January 30, 2013, former Democratic congresswoman Gabrielle Giffords testified briefly before a Senate Judiciary Committee on gun violence. Her argument urging stricter gun laws, however, was not the newsmaker of the day. Instead, what dominated the news was her use of language, and in particular the handwritten notes from which she spoke. Giffords had been shot just over two years prior by a gunman, tragically sustaining a severe head injury while speaking to her Tucson, Arizona, constituents. That shooting left Giffords with not only physical disabilities but also with aphasia, a disability affecting her ability to use language: to speak, to decipher spoken language, to read, and to write.

      The Atlantic and the Washington Post reposted pictures of Giffords’s handwritten notes, initially shared on the Facebook page of Giffords’s PAC Americans for Responsible Solutions. The Atlantic framed those notes as pen-scrawled words deliberate, diligent, written on a surface all too familiar to schoolchildren: binder paper. She is trapped in her injury, the brief write-up went on, and few things make that point more powerfully than a piece of binder paper and a hand-scrawled message (Garber). Shortly after, the Atlantic’s initial posting was edited to reflect that Giffords, in fact, had not handwritten the words herself, but rather, that it was her speech therapist’s handwriting. I offer this example as a window into the complexity of meanings for literacy, language, personhood, and authorship in the context of disability. Giffords’s disability dramatically affects both what writing studies scholars would call her literate practices—how she uses writing and reading and speaking, her handwriting, her having others handwrite—and also how the press recognizes her as a literate, or an illiterate, person.

      Alleging that Giffords is trapped in her injury frames disability as a kind of static, individual embodied flaw demanding medical treatment, the kind of medical model framing that has been critiqued broadly by disability studies scholars and disability justice activists. I would argue that the media portrayal of Giffords’s literacy, too, is trapped by this rigid framing of disability as injury. In the hands of Giffords, even the lined binder paper she reads from is itself taken up as a symbol of Giffords’s embodied deficits, of her limiting, trapping injury. In this way, Giffords is trapped in others’ perceptions of her so-called infantile literate skills. Illiteracy and disability here are bound up: one signaling the other. Literate materials—the childhood paper and scrawled letters—make that point, as the Atlantic writer Megan Garber goes so far as to say, more powerfully than anything else she can imagine. Marking or alleging [a] lack of literacy, though, signifies much more than just a lack of literacy (Dolmage, Academic 110). Rather, alleging a lack of literacy, Jay Dolmage claims, may be a way to insinuate a biological lack or difference, a disability, without coming out and saying it, or writing it (Dolmage, Academic 110).

      What else might literacy—or literate ability or literate disability—in the life of a disabled public figure like Giffords symbolize? It matters, the updates made to Giffords’s story show, who did the physical handwriting of the speech notes themselves. Because political ghost-or speech-writing is a ubiquitous and openly acknowledged practice (Brandt, Rise), these questions of authorship are particularly striking. Studies of disability memoir writing tell us how writing by disabled people has been used to certify humanness or personhood: that to demonstrate the ability to write is to demonstrate the ability to think and, thus, to be human (Berube). As with slave narratives that begin with statements by whites certifying the authenticity of the writing of African slaves, disability autobiographies have commonly opened with certifying context by medical authorities, family members, or other so-called able-bodied/minded authorities that the writing has in fact been produced by the disabled person: certifying authorship, certifying literate ability, certifying personhood. This brief example of Giffords clarifies how disability may call literacy into question, opening questions about how disability and literacy contrast and conflict—of what they mean, or have been allowed to mean, together.

      A second scene occurred closer to home for me: a few months before I began my PhD program in rhetoric and composition, my mother had a severe hemorrhagic stroke, causing right-side paralysis and aphasia. For several months, she didn’t speak at all. For someone who had always been so loquacious, this was a sea change. Then she regained a few words at a time: strange words at strange times, yes for no, no for yes. One time, pocket for Kleenex in a repeated question, Do you have a pocket?, which yielded both frustration and laughter. After much silence, she recalled unexpected, often multisyllabic, words from paraphernalia, redundant, and actually to her childhood pet dog’s movie-star name, Gypsy Rose Leigh. Other words were missing: her birthdate, or the day of the week to perform at the doctor’s appointment that ultimately assessed her as insufficiently prepared for the hospital’s inpatient intensive rehabilitation program, or her daughters’ names. From the basement therapy room of the nursing home facility she ultimately called home for six months after her stroke, I thought of the possibilities and power of communicating in multiple modes. As she stuck her tongue out at me when she proved me wrong; froze out infantilizing, loud-talking neurologists and nursing staff with a sharp glare; charmed the nurses she liked with sounds, smiles, and exaggerated facial expressions, I wondered about the weight we put on language—what we expect, mark as normal or abnormal, reject out of hand.

      She and my siblings dealt with changes in our roles, settled into the relative quiet—so strange after always knowing our mother as verbose, as always talking, even in situations that called for silence—developed a shorthand, cried, laughed, worked gestures around words and words around gestures, came to ask for context and to look for synonyms, to narrow in on meaning. A family friend once observed that we communicated in what seemed like another language, saying though he was not following our conversation, it was clear that we were.

      Literacy came into contact with her still relatively new disability—or didn’t—when, at the hospital discharge and again at the nursing home intake, she refused to sign: to even make an X on the paperwork, to even hold a pen. In no small part, this is the reason my oldest sister became her power of attorney. Always more like a sketch than a signature, more like an art than a transaction, the very look, the very craft of her handwriting meant something to her. Reading and writing writ large had never been her forte. Perhaps working from something like, I later suspected, undiagnosed and unacknowledged dyslexia in a generation that didn’t expect girls to go beyond the basics of education anyway, she described being passed forward, grade to grade, until she could get out. Still, the swirls of her name were sacred, and now, as she has not to my knowledge so much as held a pen, inscribed a letter, or even made an X in the decade since her stroke, they are lost.

      Since my elementary school days, my mother always found the lines and scribbles of my handwriting, as she said, appalling, sloppy, artless. These responses reflect values around language and literacy, around penmanship and personhood, around ability and literacy, disability and illiteracy. What of the pain of handwriting when the letters no longer come quickly to mind and when one’s hand moves and feels differently? What of the specter of a memory of being able to write in certain ways? What of the shift to having other people write, read, and sign on one’s behalf? What does it mean to be literate when one’s access to language is changed? What’s normal or desirable about the ways of doing and being, or not doing and being, literate/illiterate after aphasia? What, I ask in this book, does it mean to be literate at all?

      The questions of these two public and private scenes are questions of literacy, illiteracy, ability, disability: of the materials we use to write and read; of what feels or looks right or wrong; of the ways others perceive us, or we perceive ourselves, as literate or not; of the ways literate norms hurt us; and of the ways we change, adapt, and transform those norms. In What It Means to Be Literate, I ask and explore these questions and complexities through the generous participation of people who’ve experienced strokes and brain injuries and now live with language-related disabilities, or aphasia. Aphasia, though it is relatively unknown, is more common than cerebral palsy, multiple sclerosis, or Parkinson’s disease. Every year, roughly two hundred thousand individuals in the United States acquire some form of aphasia, affecting various aspects of their language use: speaking, listening, writing, and reading (National Institute). While this book focuses in on aphasia, the experience of disability affecting reading and writing activities and identities, as well as language use and thinking processes, is certainly not entirely unique. Individuals with Parkinson’s, multiple sclerosis, or other progressive conditions may experience aphasia. Similarly, scholarship and advocacy around neurodiversity—or the varied range of neurocognitive functioning for individuals with autism, dyslexia, intellectual disability, depression, and more—has highlighted important diversity in language and literacy use in ways that overlap with the aphasic folks featured in this study (Hughes 2). Throughout, I aim to point to some of those resonances (and hope readers will make their own links) to experiences of disability, embodiment, neurodiversity, or even aging bodies in relation to literacy, literate norms, and what it means to be literate.

      My study of aphasia and literacy began not as research at all, but as a public humanities project in which I collaborated with a speech pathologist to create multimodal composing groups for local community members with aphasia interested in telling their life stories. Because aphasia affects language, the medium for so many narratives, I suspected that aphasic people’s life experiences and insights often go unheard, unobserved, and unrecorded. Accordingly, we designed not therapy, but weekly community storytelling groups to facilitate the telling of stories in life books: scrapbook-like texts that featured drawings, old photos and ticket stubs, newspaper clippings, and even locks of childhood hair. "It’s your book, we urged participants, and your story. In response to one participant’s request that she wanted to write write," we created an aphasia writers’ group that has met weekly for the past several years, focusing on the composing of any writing genre that interests participants, featuring projects from children’s books to poems to resumes and cover letters. As I sat in the small Easter egg blue-green rooms of the speech and hearing clinic in these weekly composing groups, as folks illustrated old memories and future goals on bright scrapbook pages, as our ears and eyes listened to speech and gestures alike, I learned a great deal about how individuals compose across modes and with other people, about what it means to communicate, to listen, to tell stories.

      What It Means to Be Literate draws insights from those composing groups, but it also looks beyond the clinic’s walls. Participating in these groups, I quickly realized I had questions about individuals’ literate lives outside of the groups: at home, as part of hobbies or careers, as parents

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