Disability and Life Writing in Post-Independence Ireland [1st ed.] 9783030372453, 9783030372460

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LITERARY DISABILITY STUDIES

Disability and Life Writing in Post-Independence Ireland Elizabeth Grubgeld

Literary Disability Studies

Series Editors David Bolt Liverpool Hope University Liverpool, UK Elizabeth J. Donaldson New York Institute of Technology Old Westbury, NY, USA Julia Miele Rodas Bronx Community College City University of New York Bronx, NY, USA

Literary Disability Studies is the first book series dedicated to the exploration of literature and literary topics from a disability studies perspective. Focused on literary content and informed by disability theory, disability research, disability activism, and disability experience, the Palgrave Macmillan series provides a home for a growing body of advanced scholarship exploring the ways in which the literary imagination intersects with historical and contemporary attitudes toward disability. This cutting edge interdisciplinary work includes both monographs and edited collections (as well as focused research that does not fall within traditional monograph length). The series is supported by an editorial board of internationally-recognised literary scholars specialising in disability studies: Michael Bérubé, Edwin Erle Sparks Professor of Literature, Pennsylvania State University, USA G. Thomas Couser, Professor of English Emeritus, Hofstra University in Hempstead, New York, USA Michael Davidson, University of California Distinguished Professor, University of California, San Diego, USA Rosemarie Garland-Thomson, Professor of Women’s Studies and English, Emory University, Atlanta, USA Cynthia Lewiecki-Wilson, Professor of English Emerita, Miami University, Ohio, USA. For information about submitting a Literary Disability Studies book proposal, please contact the series editors: David Bolt ([email protected]), Elizabeth J. Donaldson ([email protected]), and/or Julia Miele Rodas ([email protected]).

More information about this series at http://www.palgrave.com/gp/series/14821

Elizabeth Grubgeld

Disability and Life Writing in Post-Independence Ireland

Elizabeth Grubgeld Oklahoma State University Stillwater, OK, USA

Literary Disability Studies ISBN 978-3-030-37245-3 ISBN 978-3-030-37246-0 (eBook) https://doi.org/10.1007/978-3-030-37246-0 © The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2020 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 publisher nor the authors or the editors give a warranty, expressed 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 institutional affiliations. Cover image: gomaba/gettyimages Cover design by eStudioCalamar This Palgrave Macmillan imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Preface

Disability and Life Writing in Post-Independence Ireland is an exploration of the way forces come together: the traditions of a literary genre, the history of an emergent nation state, and the claims of the body. A wide variety of writers come the fore: some are famous, like Sean O’Casey, Christy Brown, Christopher Nolan, and Stewart Parker, others are familiar among Irish disability activists, and others are known primarily to their families and neighbors. Every voice, no matter how celebrated or obscure, adds to a developing picture of just how disability has been understood and narrated in the nearly hundred years since Irish independence. This book is the first to bring the study of life writing and disability studies into the context of Irish literature and culture, although the study of life writing and disability has taken a major place in the field of autobiography studies. The foundational work of G. Thomas Couser, Susannah Mintz, and Leigh Gilmore has considered almost exclusively writers from the United States, although recent work in disability life writing from Africa and the Caribbean offers models of addressing disability self-representation within the postcolonial state. Among Irish studies scholars, recent inquiry into the role of Irish institutions, human rights, and a refocused attention on matters of class in post-independence Ireland suggest an ongoing conversation into which this study will enter. I have made an effort throughout to clarify the underlying concepts and terminology from disability studies and autobiographical theory, with the understanding that specialists in one field may be unfamiliar with the v

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other. Throughout the manuscript, I have given more information about conditions in Ireland than I might have for a strictly Irish Studies audience. Readers interested in disability issues, Irish social history, working class and popular literatures, or in the diverse forms of life writing should find something of value to their understanding of these interrelated areas of study. Disability life writing in Ireland takes many forms and expresses many ideological positions. I have tried to address, however briefly, every life writing available by a disabled person in Ireland and Northern Ireland, although it is very likely that I have missed some obscure or recent works. A paucity of texts by women makes difficult a thorough gender analysis of Irish disability life writing; although some women have participated in oral histories or have written blog posts or short pieces for publications having to do with a specific disability, few disabled women have published autobiographies. The dearth of autobiographies by Irish individuals with intellectual and neurodiverse disabilities has also limited this study to the life writing of those whose disabilities are primarily physical in manifestation. Additionally, I have been unable to locate memoirs by disabled people of color within Ireland or by Travellers with disabilities. The intersectionality of disability, class, gender, region, and sectarian affiliations results in such overlap that it has seemed advantageous to group the texts according to aspects of genre rather than types of impairment or other demographic characteristics. The one exception to this generic organization is the second chapter, “Disability and Class: Blindness and Labor in Post-Independence Ireland.” The question of class is so fundamental to the discussion of disability in Ireland that the topic demands its own prominent place at the start. The struggle for sustainable employment among blind people in Ireland has been so central to their collective identity and social action that the life writings of those with vision impairments seem a perfect place to begin investigating the role of class and labor. That discussion is followed by an exploration of works in the context of testimony and trauma, wherein I consider the relationship between disability and institutional life, as well as briefly discussing the very few self-referential narratives of those whose disabilities arose directly from the nearly thirty years of civil war in Northern Ireland. The next section takes on the marriage of autobiography and fiction, addressing three writers—Christy Brown, Christopher Nolan, and

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Stewart Parker—for whom style and language were of paramount importance and who employ the techniques of fiction and speak from a thirdperson perspective. Genre continues to preoccupy the final two chapters, the first of which examines the constraints of genres such as the sports and celebrity autobiography, as well as organizational publications, ethnographic research, and the human rights tribunal. The final chapter explores the possibilities generated by the advent of self-publishing, blogging, and performance art. Stillwater, USA

Elizabeth Grubgeld

Acknowledgements

Many individuals helped with this project, but my first thanks must go to Joe Bollard and Des Kenny. I have delightful memories of a long afternoon with Joe (and his guide dog York) over coffee at the Gresham Hotel. Des Kenny came in to Drumcondra on a summer afternoon to show me around the offices of the National Council for the Blind Ireland, an organization he headed for many years, and to share with me his vast understanding of issues affecting Irish people with vision impairments. Paddy Doyle and I have never managed to meet, but I am grateful for an email correspondence with him that now spans more than a decade. David Lane and Sarah Fitzgerald also kindly answered my emails regarding their work. As always, communities of scholars extend themselves in service, and I am especially appreciative of Matthias Reiss of the University of Exeter who answered my query with abundant information, including copies of crucial documents unobtainable in the United States. Irish Sign Language Interpreter Cormac Leonard also sent me copies of rare and valuable materials and introduced me to the writing of Noel O’Connell. Marilynn Richtarik of Georgia State University shared her knowledge of Stewart Parker’s life and works and sent both pre-publication proofs and, as soon as it was available, her beautifully produced Lilliput Press edition of Parker’s Hopdance. The late David Oberhelman repeatedly went well beyond the duties of any academic librarian to procure rare materials for my use, and I remember him with affection and gratitude. I must also thank the

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students in my disability studies courses over the years for their commitment and insight, especially Virginia Garrett Cannon, Elle Ferguson, Conor Mack, and Jeni Maple. As ever, I honor the abiding influence of Florence Saunders Boos, who remains teacher, mentor, and friend. Portions of Chapter 2 first appeared in The Irish University Review 47.2 (2017): 266–80 and appear here with the permission of the editor. Portions of Chapter 5 were published in the open-source journal Interférences littéraires/Literaire interferenties as part of an issue devoted to forms of diaristic writing and also appear here with permission of the editor. Patricia Zafiris and the National Library of Ireland granted permission to quote from the library’s archive of unpublished materials related to Christy Brown. For underwriting a sabbatical leave and travel to collections, I am grateful to the College of Arts and Sciences and the Department of English at Oklahoma State University. Thanks must also go to the editors of the Literary Disability Series at Palgrave Macmillan for their enthusiastic support of this work, the editorial staff for their assistance in seeing the project to completion, and to G. Thomas Couser for his expert reading of the manuscript. Jacqueline Alnes agreed to the tedious labor of checking citations and proofreading, which she did with good cheer and attention to detail. To Robert, Edward, and William Decker, thank you for all you are, and a special thanks to William for reading drafts and engaging in countless conversations about disability, life writing, and Irish culture. Ed Grubgeld, this book is for you.

Contents

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Disability and Irish Life Writing: An Overview

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Disability and Class: Blindness and Labor in Post-independence Ireland

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Disability and Testimony: Survival and Activism

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Literary Disability: Autobiography and Novel at Mid-Century

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Disability and Constrained Genres: The Sports and Celebrity Narrative and the Limits of Oral History

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New Media, New Lives: Self-Publication, Blogging, Performance Art

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Index

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CHAPTER 1

Disability and Irish Life Writing: An Overview

Researchers in the social sciences and health professions have provided impressive work concerning the sociology and politics of disability in Ireland, yet the life writing of disabled people remains for the most part uncharted and unexplored.1 In the wake of autobiography’s emergence as a major genre, the concurrent development of an Irish disability rights movement, a vastly enlarged reading public, and greater access to modes of publication than ever before, there is no shortage of material to consider: to date, at least twenty full-length prose memoirs in addition to numerous short essays, oral histories, web writings, and performance pieces. Disability life writing in Ireland has with few exceptions underscored the relation between disablement and economic and social inequities, as well as calling into question the individualist sentiment of much public discourse involving disability and the pressure to repress rather than articulate difference. In doing so, these texts engage in dialogue with the formative rhetorics of numerous genres, from the bildungsroman and fiction of social realism to celebrity and sports memoirs, survivor testimony, oral histories, and the diaristic modes of blogging and social media. This book will argue that disability life writing, particularly from the post-independence period, constitutes a culturally specific narrative emphasizing the relationship between disability and class, the shaping forces of social and geographical insularity, and the domination of private life by institutional structures. Such self-representations necessarily © The Author(s) 2020 E. Grubgeld, Disability and Life Writing in Post-Independence Ireland, Literary Disability Studies, https://doi.org/10.1007/978-3-030-37246-0_1

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reflect how a society imagines and enacts stories of embodied selfhood and community. By considering how Irish memoirists frame their personal narratives within the context of the colonial and postcolonial state, I hope to join with the emergent field of intersectional and global disability studies in answering the challenge of Clare Barker and Stuart Murray, who in 2010 identified the failure of disability studies to move beyond a middle-class and primarily Anglo-American model limited by “a singular lack of specificity as to…the nature of cultures shaped by colonization and its consequences” (Barker and Murray 2010, 223).

Histories and Metaphors Despite its discussion of matters of class and nationality, this work is not a sociology of disability in Ireland nor a history of the nation’s disability rights movement, although aspects of both offer important contextualization for individual works of life writing. Neither does it focus upon disabled bodies as metaphor. Other scholars have examined Irish literary representations of disability as indictments of the failed promises of the nation and analyzed the disabling metaphors by which British apologists for colonialization justified their arguments against Irish self-rule.2 This is valuable work, but it is not the project of this book. I am less concerned with metaphors by which disabilities describe some other phenomenon than in the ways disabled people understand and articulate their own experience. That is not to say that literary language has no place. Susan Sontag’s famous denunciation of metaphor clears a path for the elucidation rather than the elimination of literary language altogether. She writes in the preface to Illness as Metaphor: My point is that illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is the one most purified of, most resistant to, metaphorical thinking. Yet it is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it has been landscaped. It is toward an elucidation of those metaphors, and a liberation from them, that I dedicate this inquiry. (Sontag 1978, 3–4)

Disability life writing frequently finds its language in received metaphors and patterns of narrative but often uses embodied experience to create

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new figurations as well. Martha Stoddard Holmes’ critique of Sontag’s polemic against metaphors of illness makes a case for the creation of fresh metaphors. She explains that metaphors function as verbal tongs, tools for holding our own or another’s embodiment away from us until a better time comes for right engagement…Thus metaphor has a prosthetic function, with all the nuances of prosthesis: it extends our sense of touch, getting us closer to those things we cannot palpate ourselves or see without technology—but also covers up what can’t be handled, as some prosthetic limbs function to accommodate the needs of nondisabled lookers rather than those of the person who wears them. Prosthesis can be enabling or deeply problematic, depending on who directs its use. (Holmes 2011, 270)

When poetic language departs from conventional terms and moves instead toward new ways of articulating the body’s experience, the results can be much more precise and communicative. Holmes calls for “training to read metaphors critically” as well as “the generation of a more varied palette of bodily metaphors (and particularly a more balanced storehouse: verbal metaphors that appeal to tactility and other senses beyond the visual; metaphors made in visual and plastic media rather than solely those made of words)” (273). There are numerous ways in which this might be accomplished without resorting to what Amy Vidali condemns as mere policing and removal of metaphors of disability. Writers can, as she suggests, “work critically, ethically, transgressively, and creatively at the edges of disability metaphor” (Vidali 2010, 51). In the writing of activist and poet Des Kenny, former director of the National Council for the Blind Ireland (NCBI), the hands and fingertips replace the visual as metaphoric sites of exploration and knowledge. The contact of hands in “The Egg Basket,” for example, invokes a history shared by people with sight loss. “Between classes and chores more relevant,” the young speaker learns the basket weaving that for generations was one of the few employments available for people with impaired vision; when the boy’s soft hands touch the palms of the partially sighted instructor, “rough in taming cane,” the contact calls to his mind the bleak communal past of “damp sheds where blind men hunched and crouched/To sustain with their toil The Asylum.” Although for the boy making baskets is simply a handicraft, he knows that for the instructor it was “a trade—a life/Maybe not so long ago” and reflects,

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not without reason, that “this was his and still might be my lot” (Kenny 2013, 11). In the moment of touch, the speaker imagines the story of his future as one of two variants of a shared narrative: the education and social mobility promised by his schooling, and the poverty and tedium of life constrained within a mat factory, where the labor would coarsen the very fingertips needed for reading. Hands and fingers metaphorically function as conduits of knowledge in other ways as well: “Touch my hand to give me light,” the speaker calls out at the end of each quatrain of “Take the Palette and Leave Me Black,” and in “Fingersight” the speaker celebrates the “tactile cataracts, these fingers,” the “eternal voyagers” that trace shapes and fling out questions “from a blistered touch that peals and heals” (55; 16). The fingertip extends itself in search of knowledge, sings out in writing the knowledge it finds, and in turn, solaces. Reimagining the metaphor of light as knowledge by positioning the “tactile cataracts” as the receptors of knowledge, “Fingersight” thus articulates an epistemology of blindness that shapes and reflects a distinct world.

Life Writing This brief foray into lyric poetry prompts me to define what this book is, instead of what it is not. Addressed to those interested in disability studies, Irish cultural history, and the genre of life writing, it will attempt to bridge the gaps among the three fields, partly by a clarification of terms and assumptions here in the introductory chapter. Readers with expertise in one of these fields may not be familiar with another, and the general reader may be unacquainted with concepts that are part of the ongoing conversations in all three areas. Although I will not return to poetry per se, I will trace those metaphors, figures, and narrative patterns by which disabled people in Ireland have written or performed their lives. Following common practice in the field, I use the terms autobiography and memoir for the most part interchangeably, while life writing acts as an umbrella term encompassing many forms of self-representation, including the literary autobiography, personal essays, testimony, letters, diaries, lyric poems, blogs, and a wide variety of popular memoir genres. Life writing has come to be understood as much more than an unreliable source of biographical data appearing between the hardcovers of a book. It is read and studied in modes ranging from cookbooks to performance art and practiced by people who are neither celebrities nor professional writers. Thomas Couser has proposed that this shift in the subject, form,

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and reception of autobiography originates in civil movements for equality, postcolonial resistance to dominant cultural narratives, and the growth of accessible media for self-representation of many kinds. He observes that of the hundreds of contemporary life writings produced by those whom a reviewer in Washington Monthly termed “nobodies,” most involve “some body”: the embodied experience of gender, sexual identity, race, or disability. “The nobody memoir,” Couser adds, “is often about what it’s like to have or to be, to live in or as, a particular body—indeed, a body that is usually odd or anomalous” (Couser 2009, 1–2). Judgments have altered as to not only what constitutes autobiography but, as Susan Cahill has observed in relation to Ireland, “which bodies matter…which types of corporality are granted material presences in hegemonic narratives and which are rendered invisible” (Cahill 2011, 2). Life writing occupies a place between fiction and non-fiction, and between literature and history. No critical reader of autobiography can assume the facticity of every detail, and I proceed on the assumption that characters may be conflated, chronologies altered, omissions made for the sake of the narrative, dialogue invented (as it can seldom be remembered verbatim), and scenarios adjusted to dramatize the underlying emotion of an event. As Paul John Eakin argues, “the allegiance to truth that is the central, defining characteristic of memoir is less an allegiance to a factual record that biographers and historians could check than an allegiance to remembered consciousness and its unending succession of identity states, an allegiance to the history of one’s self” (Eakin 2008, 64). Memory itself is as inventive as it is reconstructive, and events change each time we look back because we have altered in time. James Olney demonstrates at length in Memory and Narrative: The Weave of Life-Writing how Western representations of the act of remembering have shifted from Augustine’s palace of memory wherein specific images and stories lie intact awaiting the visitor to the perpetually revised reel-to-reel recordings of Samuel Beckett’s Krapp’s Last Tape (Olney 1998). Questions of fact return with nagging importance when life writing functions as a form of testimony, and memoirs that turn out to be entirely fictitious, whether cynically intended to pass as autobiographical for marketing purposes or whether the product of delusion, can be admitted as nonfiction only in the sense that they reproduce the state of mind—again, cynical or delusional—of their authors.3 None of the texts I discuss here could be considered fraudulent, and yet, like recollection itself, each is partial and selective, as well as being

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informed by the expectations of its genre. Each stands as a necessarily metaphoric representation of a life. The distinctions between life writing and fiction are ambiguous and often contested, and I will have more to say about the borders of genre when discussing those writings that speak from a third-person perspective and fall into that peculiar category variously called “autobiographical fiction,” “fictional autobiography,” “autofiction,” or, in Max Saunders’s coinage, “autobiografiction” (Saunders 2010). But to briefly introduce the discussion, we might begin with Philippe Lejeune’s influential 1975 essay “The Autobiographical Pact.” Lejeune contends that without definitive internal features to distinguish it from fiction, autobiography can be said to exist only when the author, the protagonist, and the narrator are “identical” and announced as such by the use of a common name. This name then establishes a pact between author and reader, one in which the reader assumes the contents of the work in hand to be “a retrospective prose narrative written by a real person concerning his own existence” (Lejeune 1989, 4). Lejeune has long been challenged on many fronts, including his reliance on relatively recent concepts of authorship and Western notions of singular unitary self. Many texts generally accepted as life writing do not fulfill the terms of this pact, such as autobiographies in third person and those with unnamed narrators. However, the most consistently significant contribution of his “autobiographical pact” has been his identification of the fundamentally rhetorical nature of autobiography. Seen rhetorically, autobiography offers identifiable gestures of intent and invites a practice of reading. Sean O’Casey, for example, subtitles I Knock at the Door “Swift Glances Back at Things that Made Me,” and recounts most of the story through eyes, if not the voice, of the child, whose name “Johnnie Casside” echoes the author’s birth name, “John Casey” (O’Casey 1939). These gestures encourage the reader to accept its invented dialogue, staged scenes, and the long, lavishly written interior monologues of Mrs. Casside and the eldest sister as a means by which he can best communicate his vision of his past. The apprehension of novelistic technique then becomes part of the experience of reading a nonfiction text, and the dialectic between fictional and nonfictional modes is less a symptom of unreliability than a process that enlarges the auto-ethnographic realm in which the individual life is textually embedded.

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The narrated life transpires, then, as an interplay among rhetorical signals, cultural formations, genre expectations, and the constraints of publication. At the same time, individuals with singular lives create the texts we read. As Paul Smith argues, “people exist in the singular.” “What is at stake here,” Smith continues, “is a sense of how and under what conditions subjects/individuals simultaneously exist within and make purposive intervention into social formations” (Smith 1988, 5). Life writing can be read as both discursively produced and as a creation of a thoroughly unique individual, the result of what Shirley Neuman calls “a dialectic between these two generalized subject-positions, between the subject as acted upon and produced by social discourse and the subject as acting to change social discourse and, therefore, its own subject position” (Neuman 1992, 223). Acknowledging the constraints of culture and language, I am convinced that autobiography can yet act as a vital form of self-creation. Writing brings into collusion many discursive practices in a site of reflection and reconsideration, providing opportunity for change in the world from and to which it speaks. The conditions of the body may produce new kinds of stories, offering variations on given cultural scripts in order to reevaluate circumscribed identities.

Life Writing and Disability Discerning the relationship between an individual text and the cultural stories it must navigate requires attention to patterns of emplotment, language (especially in regard to cultural clichés and storytelling conventions), the relationship between the text and its genre, the material conditions of its creation, its manner of publication, and the paratextual framing in which it is offered to the public. In The Wounded Storyteller: Body, Illness, Ethics, Arthur Frank establishes four fundamental patterns underlying stories of bodily illness or impairment: restitution, chaos, quest, and testimony. Never intended to be prescriptive or entirely inclusive, and frequently overlapping, these flexible categories describe plot arcs recognizable in forms ranging from the literary autobiography to blog posts, in addition to advertising, films, journalistic accounts of disability, and television drama. Many popular narratives draw on the pattern of restitution in which the protagonist either dies or is healed physically or emotionally, often through the intervention of a nondisabled figure of wisdom or

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power. The stories Frank classifies as chaotic produce the repetitive, broken tellings characteristic of trauma and ungovernable psychic and physical pain. In the quest, as Frank defines it, the self accepts its embodiment and seeks to enter the wider world as a heroic individual. By far the most common mode of life writing, the quest draws on patterns of escape and deliverance prevalent throughout autobiographical literature and reflects a western preoccupation with individual achievement. The testimony, which Frank sees as the pinnacle of autobiography as a moral action, moves outward to answer the needs of others (Frank 1995). Simply identifying these patterns serves little purpose, but an awareness of their ubiquity denaturalizes their formative power and challenges their inevitability. As Frank argues, the predominance of the pattern of restitution places agency in the hands of the heroic enabler and renders acute illness from which one dies or recovers a more popular subject matter than disability and chronic illness, which may be enduring but unchanging, following neither a regressive or progressive plot arc (77). In their introduction to a special issue of the Journal of Literary and Cultural Disability devoted to “cripistemology,” or, more plainly, disability as producing ways and forms of knowledge, Merri Lisa Johnson and Robert McRuer posit a general rule from their own experience: “we know that it does not always get better, and when it does, there is a cost attached. Pain rears its sometimes inarticulate, sometimes articulate head here…The willful crip rejoinder to ‘it gets better’ is ‘it’s always something.’” Johnson defines the story of her disability as “episodic, not linear, a matter of intensities, sensations, and situations, not illness and cure” (Johnson and McRuer 2014, 127, 135). Repetition, rather than progression, also characterizes the narration Frank tends to pathologize as chaos: “The story traces the edges of a wound that can only be told around,” he writes. “Words suggest its rawness, but that wound is so much of the body, its insults, agonies, and losses, that words necessarily fail” (98). Narrative position is fragmented: “chaos stories remain the sufferer’s own story, but the suffering is too great for a self to be told” (115). However interrupted, repetitive, or circular, nevertheless the story is told and perhaps requires this fragmentation to articulate its author’s perspective organically. The imposition of a progressive structure suppresses this self-knowledge, just as it silences experiences best described through the language of chaos. The quest narrative, Frank’s third category of illness and disability stories, foregrounds the moral agency of the speaker and a desire to serve the reader by exploring the vulnerability and contingency of the

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body. In some cases, the quest affirms an even stronger sense of otherdirectedness as a form of testimony. This mode of self-telling is founded upon the assertion of identity as, rather than in spite of, a body. Similarly seeing autobiography as an act of self-making, Thomas Couser contends that many contemporary disability memoirs, like the coming-out narratives of sexual and gender identity formation, recount “the private acceptance and public acknowledgement of a stigmatized identity that is somatic in its basis. Both conditions (homosexuality and illness) are initially given, not chosen; coming out, however, requires that both identities be consciously affirmed and freely elected” (Couser 2009, 168). Identity, however, proves a troublesome concept, especially in disability narratives. Assertions of identity not only take place in reference to rhetorics of genre and culturally prescribed formulations of selfhood but are subject to the conditions and protocols of publication. Some memoirs in this study have been heavily edited and even ghost-written by a named or anonymous professional writer. Oral histories present their own set of problems when identity is articulated in response to specific questions asked by a researcher or as part of a document affirming the efficacy of an organization or institution. Marketing material such as cover art, the back-cover biography, and advertisements also affects the presentation of identity in the text itself. Unlike most memoirs, disability texts often appear prefaced by celebrities; in Ireland, these include individuals like television personality Gay Byrne, Supreme Court Justice Hugh O’Flaherty, and Gaelic football legend Mick O’Dwyer. As in the prefaces with which white abolitionists authenticated the stories of escaped slaves for a chiefly white readership, these introductory documents address the presumably nondisabled reader who may doubt the severity of a disability or the integrity of anyone who would write of it. Repeatedly, authors are introduced as exceptional, remarkable, inspirational, amazing, and special and, most frequently, devoid of self-pity. The introduction to John Curran’s first of two memoirs, Just My Luck (1993), promises that the book “for all time…proves that the physically disabled do not have to be in any way deprived either mentally or intellectually” (Curran 1993, 8); Joan McDonnell, the preface declares, “is totally devoid of victim-hood” (McDonnell 2004, n.p.); and publisher David Jones assures the reader of Mossie Forde’s 2010 autobiography that she is an “inspiration” who “doesn’t wallow in self-pity” (Forde 2010, n.p.). In addition to being framed by such well-intentioned but profoundly prejudicial statements of what one is or can be, or is likely to be, the

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mode of the quest, with its establishment of what Arthur Frank calls the “moral humanity” of a singular self (166), may also understate the social construction of identity and the value of a communal identity. David T. Mitchell observes that “Memoirs and autobiographical tales of physical hardship and public ostracism appeal to the singularity of experience that appeases a reader’s desire for the intimacy of confession and the narrative demand for individual exclusivity” (Mitchell 2000, 312). The autobiographical “body solitaire,” Mitchell warns, privileges an autonomous self at odds with the reality of dependency. Although popular concepts of disability stories presume a protagonist who is extolled as special or extraordinary, for many, living with a disability requires at least one assistant and often a network of friends and relatives. Such relationships may involve intimate access to the body in need of assistance, and all such arrangements require ongoing negotiations regarding privacy and autonomy. The contingency of human life appears in high relief and at odds with models of autobiography that emerge from Enlightenment valorization of the private individual. If, as Paul John Eakin has claimed, ethics is “the deep subject of autobiographical discourse” (Eakin 2004, 6), then writing about disability involves not only many ethical considerations endemic to life writing but also, and in a much wider sense, the ethics of living in a world of contingent relations and necessarily social concerns.

Disability: Definitions and Theories As I have suggested, long-standing debates about the nature of autobiography have revolved around this tension between a singular subject and a theory of autobiographical self-creation on the one hand, and, on the other, a contingent self who speaks out of a web of cultural discourses. In a similar sense, debates about the origins and nature of disability have questioned whether disability is the product of individual embodiments or the social processes and restrictive environments by which bodies are marked as disabled, or some fusion of the two perspectives. A product of the grass-roots activism of the 1970s, the social model distinguishes between individual conditions (sometimes described as impairments) and the restrictive laws, environments, and discourses that produce disability as a cultural phenomenon with far-reaching effects. Of special importance to Irish culture, the social model emphatically distinguishes itself from concepts of disability that locate the origin of impairment in spiritual or moral deficit, or, conversely, in having been chosen by God for some

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special purpose. The social model has proven useful in establishing what Tobin Siebers calls “a tactical category” of identity. “The struggle for civil rights,” he maintains, “is different from the usual process for people with disabilities because they must fight against their individuality rather than to establish it” (Siebers 2008, 60–61). However, a rigid application of the social model soon reveals its limitations. Lennard Davis, arguing for disability as an “unstable category,” has observed that “impairment,” often positioned as a condition of the body antecedent to culturally based disablement, is itself “not a neutral and easily understood term,” relying as it does on cultural notions of ability and medical diagnoses (Davis 2002, 23). In Disability Rights and Wrongs, a very controversial book in Britain when first published in 2006, Tom Shakespeare argues against the strict bifurcation in thinking that separates embodiment from social process. His reasons are many, including the social model’s inability to locate the origins of pain in the body, the mind, or social restriction. He also debates the claim that disability can be defined as a condition rooted in oppression, as even in a utopian ideal world, physical limitations and pain would go on despite the removal of barriers. Above all, he insists upon attention to the multifaceted and various interaction of physical, mental, and social factors that together produce disability (Shakespeare 2013). Sharon Snyder and David Mitchell also take on the limitation of social model theory to argue for a “cultural model” based upon an understanding that impairment is both human variation encountering environmental obstacles and socially mediated difference that lends group identity and phenomenological perspective….This insight shifts disability from either a medical pathology or signifier of social discrimination into a source of embodied revelation….The cultural model of disability does not jettison embodiment but views it as a potentially meaningful materiality. An embodied experience can be embraced while also resulting in social discrimination and material effects (such as pain, discomfort, or incapacity). (Mitchell and Snyder 2006, 10)

Similarly questioning the dominance of the social model, Tobin Siebers offers an alternative “theory of complex embodiments” that takes up the issue of representation, seeing the body and representation as reciprocal agents. Rejecting a view of the body as entirely acted upon by culture, Siebers suggests that the body’s own effects on representation are as important as the question of how representations affect understandings of

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the body. “The body is first and foremost,” he writes, “a biological agent teeming with vital and often unruly forces. It is not inert matter subject to easy manipulation by social representations. The body is alive, which means that it is as capable of influencing and transforming social languages as they are capable of influencing and transforming it” (Siebers 2008, 68). Siebers maintains that “the disabled body changes the process of representation itself…Deaf eyes listen to public television. Tongues touch-type letters home to Mom and Dad. Feet wash the breakfast dishes. Mouths sign autographs. Different bodies require and create new modes of representation” (54). Arthur Frank offers the equally tantalizing suggestion that “Observing what stories say about the body is a familiar sort of listening; describing stories as told through the body requires another level of attention” (Frank 1995, 2). Throughout my discussion of life writing by people with disabilities in Ireland, I will look not only at culturally specific representations and the relationship of text to genre but wherever possible for such traces of embodiment and textual transformation.

Life Writing in Ireland Writing about the experience of disability in Ireland necessarily takes place against a backdrop of readerly expectations about the nature of Irish autobiography, as well as a diverse set of practices regarding oral and written self-representation. Once understood as a predominantly masculine literary form with recognizable common traits, Irish autobiography has more recently been acknowledged as inclusive of varied voices, forms, and concerns. Although full-length studies of Irish life writing beyond single-author studies have been few, Liam Harte’s edited collection, The Cambridge History of Irish Autobiography (2018), does much to remedy that gap through its extensive chronological and topical coverage. In his introduction to the collection, Harte thoroughly surveys the secondary literature in the field. It is not my purpose to repeat his findings here or to give a history of the genre but instead to consider how the traditions of Irish life writing illuminate the work of people with disabilities. What are those traditions? There have been several attempts to chart such an outline, but as Harte concedes, “Every tour d’horizon must be hedged about with qualifications and hesitations, every typological gesture thwarted by the fact of thematic and stylistic diversity…the closer one looks for continuities and correspondences, the more one becomes

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aware of kaleidoscopic variety” (Harte 2009, 201). With such acknowledged problems in mind and limiting the generalizations to published books by noted authors after 1900, one might yet organize three broad categories of autobiographers: the Anglo-Irish and the literary revivalists, the fiction writers of the Catholic lower middle class after independence, and contemporary writers in the confessional or postmodern mode. The autobiographies of the class once known as Anglo-Irish work through alternating modes of satire and elegy their abiding concern with a patrilineal family history, an often idealized childhood, familial property, and an anthropomorphically apprehended landscape (Grubgeld 2004). In contrast, the autobiographies of such major practitioners of the novel and short story as Frank O’Connor, Sean O’Faolain, and John McGahern produced texts that have come to be identified with the national expression of the genre. Fusing literary naturalism and modernist techniques of fiction, their stories document the familiar world of harsh childhoods, religious disenchantment, sexual confusion, a disappointed romance with militant or cultural nationalism, and eventual emigration (Harte 2007; Lynch 2009). At the turn of the twenty-first century, Irish life writing draws often from the discourse of human rights testimony, the confessionalism of contemporary modes of self-presentation, and the self-conscious postmodernism of writers like Dermot Healy and Ciaran Carson. Across such sweeping categories, admittedly rife with exceptions and contradictions, readers have noted a reoccurring correlation between an individual life and the life of the nation. In one of the earliest treatments of Irish autobiography as a national genre, Michael Kenneally writes that the “perception of a special relationship between self and nation, the tendency to explore and define oneself in terms of patriotic values and national goals, to equate one’s development with national destiny provides the central structural metaphor of twentieth-century Irish literary autobiographies” (Kenneally 1989, 13). Declan Kiberd’s declaration that “autobiography in Ireland becomes, in effect, the autobiography of Ireland” (Kiberd 1995, 119) is echoed in the subtitle of Claire Lynch’s Irish Autobiography: Stories of Self in the Narrative of a Nation (Lynch 2009). For the most part, this correlation of self and nation holds true for the self-conscious and highly literate work of the professional writer. Even a contemporary feminist text like Nuala O’Faolain’s widely read Are You Somebody (1996) places the individual life within a critique of national values and social practices as they affected the inner lives and outward conditions of women. Alternatively, several studies have suggested that

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women often produce significant variations on these tropes, and future studies of writings by immigrants and people of diverse ethnicities, sexual identities, and ways of life may uncover entirely different forms of subjectivity and modes of telling.4 As a whole, the life writing of Irish people with disabilities bears none of the traits associated with Anglo-Irish life writing and differs considerably from the best known mid-century autobiographies. Nationalism or the overt discussion of Irish identity figure very little, except as a concern that eventually takes a place secondary to class, as in Sean O’Casey’s sixvolume autobiography. Or it may figure as the preoccupation of a difficult father, as in Christy Brown’s Down All the Days, or as part of a very localized identity, such as that expressed in John Curran’s two memoirs, both of which fuse the story of his adjustment to quadriplegia with an anthropology of his small community in West Kerry. Joe Bollard’s vivid portrayal of expatriate Irish society in England proves an exception, although it is through implication rather than direct statement that he parallels the narrowness of working-class Irish life at mid-century with the very limited knowledge and resources with which he set out on his own as a blind man with no more to his name than a bottle of wine and a shabby suitcase of meager possessions. Although some life writings refer to difficult childhoods, Christy Brown’s fictionalized Down All the Days and David Lane’s web blog Tales from the Institution are alone in representing the violent or unreliable father, long-suffering mother, and tragic siblings of so many Irish autobiographies. Joe Bollard depicts his hard-working and hard-drinking parents as aloof and, by contemporary standards, neglectful, but neither portrayal follows the familiar pattern of family dynamic evident in Irish classics like Frank O’Connor’s An Only Child (1961) or John McGahern’s Memoir (2005). Although Bollard writes regretfully of his mother’s inability to express affection, he also speculates that perhaps because his mother declared that “she hadn’t the time to ‘sit under a blind child,’” he was “turfed out” to roam the Pearse House Flats on his own, developing physical confidence and social intelligence. “I learned to fight my own battles,” he writes, “as the kids in the flats gave me no special treatment. I learned to use my ears and my wits” (Bollard 1997, 15). Mossie Forde (2010) lived with eleven siblings in a three-room farm laborer’s house with a mud floor and no plumbing, but she recalls her parents as loving and conscientious; as a child with cerebral palsy she yet played outside with her siblings, participated in social events, and was fully incorporated into the life of the family. More affluent families like those

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of Christopher Nolan (1987), poet Davoren Hanna (1990), and contemporary blogger Tommy Collison (2012) also refused the dismal verdicts of medical professionals and were able to provide books, excursions, and opportunities to enrich the intellectual lives and linguistic development of their children. Whereas the treatment of nationalism, national identity, and family life seem to differ from the expectations of mid-century Irish autobiography, disenchantment with religion—or at the very least ambivalence about its social teachings and institutional manifestations—looms large in the memoirs of Irish people with disabilities. Post-independence Ireland was not unusual in its treatment of people with disabilities, but the sovereignty of religious authority over the institutional structures to which disabled people were subject was more unilateral than in many other places. The field of disability studies has been in general hostile toward religious interpretation, and not without warrant: views of disability in the Christian tradition have been most often negative, patronizing, and counterproductive to the fight for equal access and changes in the social mechanisms that disenfranchise a population on the basis of physical difference. Susannah Mintz notes that religious narratives of disability frequently look to the afterlife for significance, offer the triumph of individual consciousness in place of community solidarity and improvement in societal conditions, and insist that physical impairments are God’s means of developing the spirit and are forms of “suffering” rather than physical differences whose features are shaped as much by a socially bound reading of the body as the impairment itself (Mintz 2006). In The Disabled God, theologian Nancy Eisland critiques traditional religious claims that physical disability teaches the just patience, keeps the virtuous from pride, corrects the sinner, proclaims God’s power, and acts as a sign of punishment in the world to come (Eisland 1994). Although even religious skeptics speak fondly of their experiences among other disabled people at Lourdes and some writers find continuing sustenance in the community of their local congregations, few present religion as a sustaining set of beliefs. Whether in reaction to mistreatment in church-run institutions or being subjected to the kinds of claims Mintz and Eisland enumerate, many emphatically repudiate religious interpretations of physical impairment as either a sign of sin or of a privileged relationship with the suffering Christ through one’s own bodily suffering. Among those who grew up at mid-century, Christy Brown relates in Down All the Days (1970) how neighbor women angered the narrator’s mother on a regular basis

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by urging her to bring him to see the “Relic” in order to effect a cure for what they perceived as imbecility; Paddy Doyle reflects that instead of being treated for an ear infection, he was told to offer up his pain for the sake of the Holy Souls in Purgatory (Doyle 1989); and a former residential hospital inmate spoke to the Ryan Commission of “a very tall nun” telling him as a small child that he was a “cripple” because he had “offended god” and dropping him to the floor as a punishment (Commission 2009). The oral histories of disabled Irish persons collected by Janet Tubridy in the mid-1980s record the still frequent experiences of being offered relics, taken on pilgrimages, and being perceived as “special” in God’s eyes. One man wryly observes, I could have made a fortune out of the number of so and so’s who asked me to say a prayer for them. If I had only charged a penny, I would have been rich by now, you know. My attitude hardened over the years towards people. Like, the old lady comes along and says, “Say a prayer for me son.” I do say, “Why don’t you say your own feckin prayers?”

A man who incurred a spinal cord injury during the 1960s remembers, there was an old woman down the road there and when I came home first she’d come down with a medal from St Joseph or St Patrick or a cure from this or that. One Monday she came over and I was in a bad humour and had a hangover and no money and I said, “The best cure you can get me is to go up to the pub and get me a large bottle and bring it back.” She never came over near me since. (Tubridy 1997, 194)

Whereas these incidents are not surprising to anyone familiar with traditionalist religious culture, the indignation with which they are recalled in each case signals the speaker’s belief in the depersonalizing and selfjustifying effect of this variety of religious interpretation. Stories such as these make clear that when we look at life writing in an Irish context, we have an expression of a culturally specific way of understanding disability that continues to underlie even the more secular and human rightscentered ethos of Ireland in its contemporary formation.

Purposes, Goals, and Hopes I have been frequently asked why I am engaged in this work. I choose not to answer such questions with disclosures about myself or my family, as that would detract from the recognition of disability as an analytical

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category equal in importance to class, gender, sexuality, and ethnicity. To do so would also undermine what has been disability theory’s greatest gift to me: the knowledge that the origins of disability are not exclusively in the body; that physical impairment is not equivalent to tragedy; and lastly and most importantly, that disability is social, political, economic, geographical—and never simply a personal matter. I would also attest that trying to understand Ireland without trying to understand the experiences of disabled people in Ireland produces a limited comprehension of a complex and diverse culture. A thorough reading of a national narrative—whether it be one of piety, obedience, and sacrifice, or of internationalism, consumerism, and entrepreneurship—requires attention to the stories that have been excluded from dominant versions of national culture. As philosopher Ladelle McWhorter observes, the power-knowledge networks that produce and regulate disability also produce and regulate ability, ableness, normality. The practices and institutions that divide, for example, the “able-bodied,” “sane,” and “whole” from the “impaired,” “mentally ill,” and “deficient” create the conditions under which all of us live; they structure the situation within which each one of us comes to terms with ourselves and creates a way of life. Normality has a history, a set of investments, an entire array of supports and assumptions that bring it into being, sustain it, and alter it when conditions so demand. To look at our world as it is seen by disability activists and scholars…is to look at the world we all live in. (McWhorter 2005, xv–xvi)

I would add to her conclusions only the admonition that we look not only to activists and scholars but to disabled artists and creative writers as well. Post-independence Ireland has come to be understood as an era in which the forces of church and state colluded to control the body and sequester those bodies that could not or did not conform. Those human beings whose bodies could not be made to conform represented an ontological threat to that order and, in a sense, they are present, whether named or not, in every writing that treats the ideological or behavioral nonconformist or, for that matter, the social edifice against which they are marked as nonconformist. The sequestration of disabled people in back rooms, sheltered workshops, and most especially in residential institutions of many kinds reflected and affected the shape of a society that chose to exclude them from its familial and political structures.

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Times have changed. Many of the writers who are discussed in this book are alive and well in the twenty-first century, and a few are young enough to have been born or come of age after the social revolution that began with the Second Vatican Council, the advent of civil rights campaigns, access to television and electronic media, and far-reaching changes in economic policies and practices. Although their physical impairments— cerebral palsy, spinal cord injuries, dystonia, multiple sclerosis, and others—mirror those of an earlier era, their experience and their mode of writing about that experience differ from their predecessors and offer a distinctive insight into transformations in Irish life. It is my aspiration that the matter of disability will more fully enter the discussion of Irish literature as it has entered discussions of social policy and public health. I hope that this study may reach across disciplinary boundaries within and beyond universities to contribute not only to our understanding of the past but to the ongoing efforts to shape the present.

Notes 1. Because I see disability as both a social construct and a physical embodiment, as well as acknowledge the crucial importance of both collective action and individual experience, I use the terms “disabled person” and “person with a disability” interchangeably. 2. As of this date, a book-length history of the disability rights movement in Ireland has yet to be written. For a history of cultural concepts of disability and institutional practices in Ireland, see McDonnell (2007). For an analysis of disabling metaphors as part of the colonial apparatus, see Mossman (2009), Gray (2011), and Quirici (2015). 3. Testimonial autobiography may include events that have been altered for the sake of narrative but which are “true” in the sense of having been experienced by people (although perhaps not the author) in the situation with which the author is identified. The best-known examples of these kinds of texts are Elie Wiesel’s Night and Rigoberta Menchú’s I Rigoberta Menchú. For discussion of the issue, see Gilmore (2001). 4. For discussion of autobiography by Irish women, see Napier (2001), Grubgeld (2004), Lynch (2009), and many of the essays collected in Harte (2018).

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References Barker, Clare and Stuart Murray. 2010. “Disabling Postcolonialism: Global Disability Cultures and Democratic Criticism.” Journal of Literary & Cultural Disability Studies 4 (2): 219–36. Bollard, Joe. 1997. Out of Sight. Dublin: Wolfhound. Brown, Christy. 1970. Down All the Days. London: Martin Secker & Warburg. Cahill, Susan. 2011. Irish Literature in the Celtic Tiger Years 1990–2008. London: Continuum. Collison, Tommy. 2012. That’s Me. Amazon Digital Publishing. Commission to Inquire into Child Abuse. 2009. Report (Volumes I–V). Dublin: Stationery Office. http://www.childabusecommission.ie. Couser, G.Thomas. 2009. Signifying Bodies: Disability in Contemporary Life Writing. Ann Arbor: University of Michigan Press. Curran, John. 1993. Just My Luck. Tralee: Inné Teo. Davis, Lennard J. 2002. Bending Over Backwards: Disability, Dismodernism, and Other Difficult Positions. New York: New York University Press. Doyle, Paddy. 1989. The God Squad. London: Corgi. Eakin, Paul John. 2004. “Introduction: Mapping the Ethics of Life Writing.” In The Ethics of Life Writing, edited by Paul John Eakin, 1–16. Ithaca: Cornell University Press. ———. 2008. Living Autobiographically: How We Create Identity in Narrative. Ithaca: Cornell University Press. Eisland, Nancy. 1994. The Disabled God: Toward a Liberatory Theology of Disability. Nashville: Abingdon. Forde, Mossie. 2010. Mossie’s Story. Dublin: TAF Publishing. Frank, Arthur. 1995. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press. Gilmore, Leigh. 2001. The Limits of Autobiography: Trauma and Testimony. Ithaca: Cornell University Press. Gray, Sarah. 2011. “Irish Disability: Postcolonial Narratives of Stunted Development.” PhD. diss., University of Illinois. Grubgeld, Elizabeth. 2004. Anglo-Irish Autobiography: Class, Gender, and the Forms of Narrative. Syracuse: Syracuse University Press. Hanna, Davoren. 1990. Not Common Speech. Dublin: Raven Arts Press. Harte, Liam. 2007. Modern Irish Autobiography: Self, Nation, and Society. Basingstoke: Palgrave Macmillan. ———. 2009. “‘Tomorrow We Will Change Out Names, Invent Ourselves Gain’: Irish Fiction and Autobiography Since 1990.” In Irish Literature Since 1990, edited by Scott Brewster and Michael Parker, 201–15. Manchester: Manchester University Press. ———. 2018. The History of Irish Autobiography. Cambridge: Cambridge University Press.

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Holmes, Martha Stoddard. 2011. “After Sontag: Reclaiming Metaphor.” Genre 44 (3): 263–76. Johnson, Merri Lisa and Robert McRuer. 2014. “Cripistemologies: Introduction.” Journal of Literary & Cultural Disability Studies 8 (2): 127–47. Kenneally, Michael. 1989. “The Autobiographical Imagination and Irish Literary Autobiographies.” In Critical Approaches to Anglo-Irish Literature, edited by Michael Allen and Angela Wilcox, 111–31. Gerrards Cross: Colin Smythe. Kenny, Des. 2013. My Sense of Blind. Dublin: Estuary Books. Kiberd, Declan. 1995. Inventing Ireland: The Literature of the Modern Nation. London: Jonathan Cape. Lejeune, Philippe. 1989. “The Autobiographical Pact.” In On Autobiography, edited by Paul John Eakin and translated by Katherine Leary, 3–30. Minneapolis: University of Minnesota Press. Lynch, Claire. 2009. Irish Autobiography: Stories of Self in the Narrative of a Nation. Bern: Peter Lang. McDonnell, Joan. 2004. With a Spring in My Step. Cork: Collins Press. McDonnell, Patrick. 2007. Disability and Society: Ideological and Historical Dimensions. Dublin: Blackhall. McGahern, John. 2005. Memoir. London: Faber & Faber. McWhorter, Ladelle. 2005. “Forward.” In Foucault and the Government of Disability, edited by Shelley Tremain, xii–xvii. Ann Arbor: University of Michigan. Mintz, Susannah B. 2006. “Ordinary Vessels: Disability Narratives and Representations of Faith.” Disability Studies Quarterly 26 (3). http://dsq-sds.org/ article/view/722/899. Mitchell, David T. 2000. “Body Solitaire: The Singular Subject of Disability Autobiography.” American Quarterly 52 (2): 311–15. Mitchell, David T., and Sharon Snyder. 2006. Cultural Locations of Disability. Chicago: University of Chicago Press. Mossman, Mark. 2009. Disability, Representation, and the Body in Irish Writing 1800–1922. Basingstoke and New York: Palgrave Macmillan. Napier, Taura. 2001. Seeking a Country: Literary Autobiographies of TwentiethCentury Irish Women. Lanham, MD: University Press of America. Neuman, Shirley. 1992. “Autobiography: From Different Poetics to a Poetics of Difference.” In Essays on Life Writing: From Genre to Critical Practice, edited by Marlene Kadar, 213–30. Toronto: University of Toronto Press. Nolan, Christopher. 1987. Under the Eye of the Clock: The Life Story of Christopher Nolan. New York: St. Martin’s Press. O’Casey, Sean. 1939. I Knock at the Door: Swift Glances Back at Things that Made Me. New York: Macmillan. O’Connor, Frank. 1961. An Only Child. New York: Knopf.

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O’Faolain, Nuala. 1996. Are You Somebody? The Accidental Memoir of a Dublin Woman. New York: Henry Holt. Olney, James. 1998. Memory and Narrative: The Weave of Life-Writing. Chicago: University of Chicago Press. Quirici, Marion. 2015. “Cathleen ni Houlihan and the Disability Aesthetics of Irish National Culture.” Éire-Ireland 50 (3–4): 74–93. Saunders, Max. 2010. Self-Impression, Life Writing, Autobiografiction, and the Forms of Modern Literature. Oxford: Oxford University Press. Shakespeare, Tom. 2013. Disability Rights and Wrongs Revisited. London and New York: Routledge. Siebers, Tobin. 2008. Disability Theory. Ann Arbor: University of Michigan Press. Smith, Paul. 1988. Discerning the Subject. Minneapolis: University of Minnesota Press. Sontag, Susan. 1978. Illness as Metaphor. New York: Farrar, Straus, and Giroux. Tubridy, Jean. 1997. Pegged Down: The Experience of People in Ireland with Significant Disabilities. Dublin: Institute of Public Administration. Vidali, Amy. 2010. “Seeing What We Know: Disabilities and Theories of Metaphor.” Journal of Literary and Cultural Disability Studies 4 (1): 33– 54.

CHAPTER 2

Disability and Class: Blindness and Labor in Post-independence Ireland

It is the argument of this book that disability life writing in Ireland takes a particular shape influenced by cultural factors and the protocols of genre. The conventions of genres like the bildungsroman, human rights testimony, celebrity autobiography, and, at the turn of the twenty-first century, the blog and self-referential stage or video performance interact with a distinct history. The power of institutions over private life, geographic and cultural insularity, religious understandings of the body, and an acute recognition of the relationship between disability and class become prominent features within the story of an individual life. In their indictment of church and state authoritarianism and neglect, most of the disabled writers in the century following independence place their autobiographies in dialogue with traditions of proletarian realism. The common characterization of post-revolutionary Ireland as a classless society was not shared by persons at the lower end of the scale, who not only recognized significant class variations but also chaffed at the ways the institutionalized structures of authority served to reinforce those divisions. More recent writers continue to address those inequalities as well. As Joe Cleary remarks, “‘De Valera’s Ireland’ may well have been overwhelmingly repressive, but its repressions were always unequally allocated across classes and genders. Likewise, ‘contemporary Ireland’ may be dynamic and reforming, but the benefits of such have been as unequally distributed as were the repressions

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before” (Cleary 2007, 8). Perhaps the most notable feature of the autobiographies of this period is precisely their articulation of a causal link between class status and the origins and treatment of disability. Blind people were among the first groups of disabled Irish citizens to establish their own self-governing organizations and to directly address questions of labor and class. On April 25, 1920, representatives of the National League of the Blind of Great Britain and Ireland converged upon Trafalgar Square under the banner “Justice, Not Charity.” Supported by other members of the Trade Union Congress, they addressed a crowd of 10,000, as estimated by the attendant press. One of the first Irish disability alliances to be self-governing and resolutely independent of the charitable organizations that dominated the disability sector was thus a militant trade union with a distinctly socialist outlook. Through much of the twentieth century, the League focused its attention on working conditions: a living wage and a better environment for those employed in the “sweating dens” of the industrial blind workshops that produced mats, baskets, rope, and other goods at a piece work rate that could not begin to support independent living, even on a subsistence scale.1 The League sought as well to establish a government pension for those unable to work and to expand employment opportunities outside the workshops. In part because of the publicity and pressure brought on by the League, the Blind Persons Act of 1920 passed through parliament, although in an attenuated form that allowed local councils and voluntary organizations to retain the authority to regulate that which the league had hoped to enshrine as statutory entitlements. With Ireland in the middle of a struggle for independence and subsequent civil war, the Dáil Éireann did not discuss the bill’s provisions until 1924, and despite ongoing public protest by blind activists, its specifications were never fully implemented in Northern Ireland. Although the influence of The National League of the Blind of Ireland declined in the second half of the century, the organization remained affiliated with the Irish Trade Congress and continued to press for solutions to the chronic unemployment and undercompensated labor of blind people in Ireland.2 Matters of class are important to nearly all life writing by disabled people in Ireland after independence, but because of the often contentious history of blind persons as laborers and the historical association between ocular impairments and Ireland’s political and economic history, memoirs of sight loss provide a particularly rich field of inquiry into the relationship among disability, class, and the legacy of colonialism.

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Today, most cases of sight loss in Ireland result from rare congenital conditions, accidents, and age-related problems such as strokes or macular degeneration. But during the nineteenth and early twentieth centuries, Ireland suffered one of the highest rates of infectious trachoma in the world and was home to a proportionally greater number of people with sight loss than England, Scotland, or Wales. Paradoxically, Dublin had also been since the mid-Victorian period a site of advanced study in ocular dysfunction, and infectious trachoma received considerable attention from researchers and clinicians. Widely discussed in conjunction with typhus, smallpox, and tuberculosis as public health problems rooted in inadequate housing and diet, trachoma was also associated in the popular memory with soldiers returning from British military campaigns in Egypt, where the disease was epidemic, and with the legacy of the Famine, as well as the workhouses, prisons, and residential institutions in which trachoma and multiple ophthalmological disorders continued to plague inmates well into the modern era. Julius Boldt’s classic text Trachoma (1904), for example, reflects the general understanding of the disease during the period, emphasizing its entrance into Ireland on a large scale following the Napoleonic wars and reiterating the high risks of contagion in crowded and unsanitary living conditions.3 The two memoirs of sight loss that most fully engage the relationship among disability, class, and the economics of Ireland as a colonized and postcolonial state are Sean O’Casey’s I Knock at the Door (1939) and Joe Bollard’s Out of Sight (1998). O’Casey represents the vision impairment caused by infectious trachoma and the consequent ulceration of his corneas as solitary and isolating, exacerbated by poverty, colored by religion, and characterized most powerfully as excruciating physical pain. Although his impairment affected his daily life as an adult, O’Casey addresses the issue publicly only within his childhood memoir, a self-consciously literary and fictionalized narrative. Born just three years before O’Casey first published I Knock at the Door, Joe Bollard echoes O’Casey’s understanding of the reciprocal relationship between class and disability, while building a vivid portrait of Ireland at mid-century and traversing a narrative arc leading toward his participation in a global blind community. Known in his later life as a broadcaster and producer of radio and podcast programs about sight loss rather than as a writer, he speaks to an audience that he identifies as including both blind and sighted readers. Like other contemporary texts that will be discussed in subsequent

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chapters, Bollard’s book offers in its concluding chapters a more contemporary perspective on sight loss in contrast to that of the earlier period. The availability of these and other recent Irish memoirs in a variety of media including braille text and digitally enabled text-to-speech reflects a recognition of disabled readers as a viable audience for literature, as well as the contemporary memoir’s wide acceptance as a genre that can be effectively and movingly practiced by anyone with access to book publication or other forms of dissemination.

Sean O’Casey and the “Eye Troubles” of the Working Class The first of Sean O’Casey’s six volumes of autobiography plunges the reader into the sociological and emotional milieu of his childhood at the end of the nineteenth century. Although the time frame of I Knock at the Door is Victorian, its details might have differed little were he to have been born forty years later, given the nature of his impairment, the persistence of trachoma among the poor and institutionalized, and continued limitations in healthcare resources. O’Casey was insufficiently sighted to read without intense physical pain, yet insufficiently blind to have been eligible for a placement in one of the few schools for vision-impaired Protestants. Ireland’s controversial and protracted movement toward a national health service after independence insured the persistence of the dispensary system as the primary source of health care for those who could not afford a private physician. Even the required application to a local authority for a bright red pauper’s ticket each time a visit to the dispensary was needed, a practice described as shameful and degrading in I Knock at the Door, remained in force until 1953.4 When read as a disability text, O’Casey’s book raises four key issues: his refusal to employ literary metaphors related to vision or allusions to religious, mythological, or literary figures of blindness; his indecision whether to identify himself as a unique or a collective subject within the autobiography; and the two features I would identify as most noteworthy to an Irish representation of disability: a pronounced emphasis on the causal connection between poverty and disability and a sense of having lived within a constrained and isolated world. In an attempt to comfort two friends who had recently been informed of their child’s need for extensive surgeries, O’Casey remarks in a letter of 1928 that

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It’s bad news, very bad news indeed….And you mustn’t think it tragedy: It isn’t tragedy. Tragedy is irremediable & this is not. It is an agonising, bloated nuisance, but it isn’t a tragedy. What about me? At three or four years of age, agonising ulcerated cornea of both eyes of a tubercular origin. Sixteen or fifteen or fourteen years of pain & many periods of blindness. Still a thorn in the flesh but yet God or Nature gave compensations.

He adds that “the few years will be hard on you & Rose; it will really mean nothing to the child….If he be cured, & that is very likely, he won’t even remember the mechanism of his cure” (O’Casey 1975, 325, 326). Considering the vivid recollection of his “agonizing ulcerated cornea,” O’Casey is unlikely to have believed in this last consolation, but he did view his condition as more of a “bloated nuisance” than a tragedy requiring allegorical or religious interpretation, or even the visually oriented wordplay that is ubiquitous among other such narratives. Nor does he invoke the notion of blindness as analogous to a mystical unconscious, although the idea of what D. H. Lawrence called “a reality in the darkness” was a strong and dominant note among writers of the period.5 Through their injuries and alienation, the disabled characters in O’Casey’s plays—Johnny Boyle, Harry Heegan, and Teddy Foran—incarnate the effects of war in realistic terms, and O’Casey eschews metaphoric readings of disability in his autobiography as well as his plays. More than any other physical disability, sight loss has carried the weight of metaphor. As Julia Miele Rodas argues, Blindness has its own history, its own set of metaphors, its own literature, and its own significance….The blind man participates in a unique literary history, playing the part of inspiration incarnate: Tiresias, Homer, Milton, Joyce, Borges. Our sense of blindness, our relationship to it, is structured around a universe of blind heroes and villains, poets and seers—Oedipus, the Oracle at Delphi, Samson, Lear, Rochester, Helen Keller, Ray Charles, Stevie Wonder—in a way that can scarcely be compared to any other manifestation of disability. Blindness is our metaphor for fairness, for ignorance, for trust, for love, for vulnerability, for insensibility. The wealth of meaning that has been fabricated around the idea of blindness, our cultural reliance on blindness as metaphor, thus metonymizes the blind man, recreating him as a figure of speech, the component of a joke, a poem; or, the same gesture enables all of us, blind or sighted, to recreate ourselves as metaphorically blind.6 (Rodas 2009, 116–17)

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In I Knock at the Door, however, infectious trachoma and its consequent corneal ulceration carry no meaning beyond suffering, and O’Casey holds his narrative close to the physical and psychic effects of the disease. He attempts to balance this individualized and psychological treatment with the contextualization of his impairment within a class and cultural framework. Told through an omniscient third-person voice and with only occasional interpretive interjections from the narrator, I Knock at the Door recounts the onset of the infectious trachoma he endured for much of his childhood and which, he writes, “would mean agony for many years, and be a persistent and inscrutable handicap to him throughout the rest of his life” (O’Casey 1939, 15). He casts his autobiography within the genre conventions of a novel of social realism broken at points by expressionist lyricism, a dialectic that John Fordham finds particularly resonant in working-class texts. Figurative language and a non-realistic quality, he argues, engage with modes of proletarian realism to maintain “against the critical dominance of the feeling subject, of the unmediated impression, the primacy of the social image through its subjective expression” (Fordham 2002, 89–90). The dialectic Fordham identifies does much to explain some of the contradictory elements of O’Casey’s autobiographies. In I Knock at the Door, the narration veers between the inner world of the boy he calls Johnny Casside and the outer world of the Dublin streets, where the boy encounters the harsh inequalities of class and the clash of politics and religion. The effect is to render Johnny a product of social and biological determinism: hence the subtitle, “Swift Glances Back at Things That Made Me.” However, the book demonstrates a fundamental ambivalence about its mission. Is “Johnny Casside” the sensitive child who becomes an uncommon man, the writer, and socialist whose developing inner life must dominate the narrative? Or is he a more generalized figure struggling against the limitations of a world made even more difficult and incomprehensible by a disability caused by the inequities of class? Shall his book focus on the social universe in which Johnny develops, or on the interior life and mind of its protagonist? In many ways, the portrait is of a representative figure. Infectious trachoma was a virulent and pervasive disease. Although O’Casey reflects that among the working class “it was a time when eye troubles were little thought about, nor any weakness of the body when the weakness didn’t pin the body to the bed” (O’Casey 1939, 15), “eye troubles” often did just that. Francis Lavery’s 1930 report on the continued “scourge” of trachoma in Ireland highlights the economic costs to the community and

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to individual families when the breadwinner was unable to work due to infection. Economic deprivation and a legacy of colonialism play a conjoined role in Johnny’s difficulty, as O’Casey participates in the articulation of class issues within a nationalist framing characteristic of many early twentieth-century and post-independence formulations of class conflict in Ireland.7 While making their way home from visiting Mrs. Casside’s sister, who had made “mention of a kid having sore eyes going to some place or another, getting treatment, and getting well again” (17), mother and son observe (in a scene likely drawn from an identical juxtaposition in George Moore’s A Drama in Muslin), the luxurious carriages of those on their way to the Vice-Regal Ball.8 The surrounding crowd, some ragged and barefoot, look on with envy or admiration, and some mutter insinuations of a coming revolt. A similar scene occurs later, as Johnny writhes with pain while outside the windows the Irish battalions of Victoria’s imperial army march in celebration of the Queen’s birthday. When, under pressure from school authorities and against the doctor’s instructions, Johnny has returned to school and the ulcerations on his eyes consequently recur with exceptional ferocity, his mother glimpses the picture of Queen Victoria hanging on the wall opposite that of Lord Nelson and thinks to herself, “Enough jewels in her little crown to keep them all for the rest of their lives…Crown o’ jewels, crown o’ thorns, an’ her own boy with a crown of soakin’-wet rags to deaden the pain in his temples” (143).9 Interspersed among these allusions to England’s imperial power and Ireland’s political subjugation are repeated instances of the ways poverty produces disabilities or impedes their treatment. Ineffective and damaging home remedies are tried because a private doctor would be unthinkably expensive. The brief visits with an abrupt, though highly knowledgeable, ophthalmologist require a full day’s exertion, and those without funds to pay face the shame of the red ticket and being informed by a poor-law guardian that “neither he nor the doctor was at the hasty beck and call of those entitled to Poor Law Dispensary relief” (169). Admonitions to eat nutritious food and stay dry are impossible to follow, and none of the medical personnel bothers dispensing information to a parent too humble to insist. Johnny’s mother suspects that whereas she has not been told the cause of her son’s condition, “if she’d a couple o’ guineas to give them, they’d tell her quick enough” (143). Representatives of church and school, here drawn into composite figures of the pompous rector, the cruel Protestant schoolmaster, and the pitiless Sunday school teacher,

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treat poor children as disabled and poor children with physical impairments as doubly so. Through such figurations, O’Casey points toward the collective history of a colonized and subjugated population and, while his family’s situation was less dire than he implies, their financial resources were only relatively less desperate than many, especially after the early death of his father. Yet how collective is this narrative voice? On the one hand, the very title of the book and of its initial chapter, “A Child is Born,” anticipates the protagonist as a figure of martyrdom, righteous anger, and prophecy, and the protracted anonymity of the mother and child who struggle for survival in its first pages establish him as what Michael Kenneally calls an “alienated figure,” one “set apart and different from others, a ready victim of mistreatment and isolation” (Kenneally 1988, 198, 200). Alienated from the representatives of power and authority, Johnny thus serves as an emblem of his class. Sidonie Smith and Julie Watson have argued that O’Casey’s is a heteroglossic and communal voice in which the narrator seamlessly integrates the speech of his neighbors and family among narrative passages, interior monologue, poetry, and dialogue, producing both a community document and one that tracks the emergence of his own voice as a dramatist who will again reproduce in his plays the voices of the Dublin working class (Smith and Watson 2010, 81–83). On the other hand, O’Casey endeavors to distinguish and isolate Johnny from others like him. Only once in a brief scene in the dispensary waiting room do we see or hear the speech of others with physical disabilities. This hospital “was to know him so well in the future that the doors nearly opened of their own accord when they saw him coming” (36), but Johnny never appears in interaction with other patients at the clinic, although there must have been other children who attended as regularly as O’Casey did. Perhaps this solitary portrait is attributable to literary or biographical factors: the dramatist’s economy in focusing on a small number of characters, or his family’s disconnectedness as Anglicans whose income no longer matched their educational and social identities. Yet considering his interest in generalizing his childhood self as an emblem of colonial and economic subjugation, O’Casey’s disinclination to incorporate the voices of other disabled children and adults remains surprising. During an Abbey Theatre revival of The Plough and the Stars in 1947, after O’Casey had moved permanently to England, a group of students from St. Joseph’s School for the Blind attended the play as a reward for their excellent performance on academic tests (Lyons 1999,

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71–72). However, they could not have known that the playwright, at that point canonized as a major figure in Irish literary history, was himself vision-impaired, nor is it likely that O’Casey would have identified himself as having anything in common with the students. Like many people with disabilities, O’Casey could hardly afford to acknowledge the limits of his vision, especially during the years when he worked as a manual laborer, and only in his letters does he make reference to difficulties in reading, ocular pain, or the necessity for medical treatments that continued as his eyesight deteriorated further. The personal letters he wrote as an adult divulge how often he was passing as sighted, while in actuality he could not see figures on the street ahead of him or a stage from any seats but those in the first rows, while reading was physically taxing and often painful. Although eyesight was not the reason for O’Casey’s dismissal from the Great Northern Railway in December 1911, a report filed shortly before notes that “his eyesight is defective and it is doubtful if the Company’s Doctor would pass him” (Murray 2004, 82). By the late 1930s, he had lost vision in one eye and had difficulties with the other. But because he was generally able to function using the strategies of passing, he either had no relationships with others with similar conditions as a child or an adult, or he chose not to represent them. As the American writer Georgina Kleege says of her early years, “I did not use the word. I was not blind….Blind meant the man in the subway station, standing for hours near the token booth, tin cup in hand, a mangy German shepherd lying on a bit of blanket at his feet. That was not how I saw myself” (Kleege 1999, 17). Whereas the figure of his childhood self may encapsulate a sense of collective suffering, O’Casey’s narrative voice, speaking from the position of an adult chronicler of a world he has left behind, distinguishes itself from the mute helplessness of the recollected child and any others with similar impairments. Despite the gestures toward a communal subjectivity intimated by the opening chapter and the book’s emphasis on social, economic, and religious contexts, Johnny Casside is yet a singular subject who finds himself at odds with the world around him and who the reader knows will eventually leave that world for a literary career. The experience of disability in I Knock at the Door is at its core a saga of physical pain: immitigable, frightening, and incommunicable. As has been argued by Elaine Scarry in her influential book The Body in Pain (1985), physical pain can be an isolating sensation that resists, and even destroys, language (Scarry 1985, 4). The adult writer may recognize in retrospect

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how pain, in the words of David Morris, is “always saturated with the visible or invisible imprint of specific human cultures” and “comes wrapped in a web of personal and societal implications,” but the remembered child knows only that he hurts (Morris 1991, 14, 18). In their introduction to a special issue of Literature and Medicine devoted to the analysis of pain, Martha Stoddard Holmes and Tod Chambers note that pain in its acute stages robs the speaker of voice while being “open to narration by witnesses.” Its chronic manifestation, they argue, allows for greater selfarticulation but is often nebulous and lacks a clear trajectory (Holmes and Chambers 2005, 132). O’Casey’s pain was both chronic and acute. Its chronicity allows its narration; the omniscient voice acts as witness to the acute agony which the child endures but cannot express in speech. Its symptoms can be inventoried, as when Johnny is pictured “sitting up in bed, squirming his body and grinding his teeth” (27), or when “small, hardy, shiny, pearly specks appeared on the balls of his eyes” (14) and his siblings, weary of his constant crying, remark that his eyes resemble “two burnt holes in a blanket” (16). The omniscient narrator describes the “burning ulcerated surface” of Johnny’s eyes (34) while syntactically attributing the aggressive action to pain itself: It streaks, floods, throbs, grows keener, and waxes sharper while the boy is reduced to wordless cries. O’Casey denies pain a meaning either secular or religious; it contributes nothing toward the building of Johnny’s character and has no sacramental value. Only in one instance does the sensation of ocular pain imply any meaning other than its own ontology, and that arises in a section of manuscript excluded from the published text, although by whom and for what reason his biographers and editors have not explained. In the deleted scene, Johnny’s older sister takes him with her on her short honeymoon to Bray, where he witnesses her new husband aggressively fondling her in public despite her protests. Sent away to the waterside, he flinches in the sharp sunlight, the glare so caustic that he grinds his teeth and presses his nails into his hands with such severity that his flesh is torn; he runs toward the rocks and, miserable, kills a crab.10 As an individual symbolic configuration, ocular pain is here a mute phenomenon weighted with sexual confusion and humiliation. As a more socially saturated sign, it encompasses his sister’s degradation: a gifted student and schoolteacher, she was bound now to a soldier husband who did not marry her until she was six weeks short of giving birth and who would become violent and finally confined to an institution for the insane while she endured

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increasingly squalid surroundings, supporting her five children as a charwoman until her early death. Read as a metonym of psychological distress and social disintegration, the scene refutes sentimental interpretations of disability as spiritually or morally compensatory and situates again within the experiential world of the body O’Casey’s abiding concerns with economic injustice. At the same time, however, O’Casey’s narrow focus on the isolated child undermines the class contextualization of disability he otherwise articulates.

Between Worlds: Joe Bollard’s Out of Sight After I Knock at the Door, no other published memoirs of sight loss appear until Joe Bollard’s Out of Sight, issued in 1998 by Wolfhound Press and available in braille and in an audio version produced by the National Council for the Blind Ireland (NCBI). Individuals may have written life narratives that either have been destroyed or lie unexplored in family or institutional archives, but with a few notable exceptions such as Christy Brown and Christopher Nolan, people with significant disabilities in midcentury Ireland would not have been encouraged to write and publish memoirs. Born in 1936, Bollard straddles two distinct eras in terms of the practices of autobiographical writing and the attitudes toward disability he encounters and expresses. He became totally blind at the age of two from what may have been misdiagnosed mastoiditis or surgical error. The reason was never explained to his parents, whom he believes to have been too cowed by a sense of class inferiority to have pressed for answers and compensation. His vision loss was sudden and free from the chronic pain O’Casey describes. Educated at residential schools for blind children in Dublin and Liverpool, he was from childhood immersed in a society of other blind people. Although married to a sighted woman, working most of his life with sighted musicians, and initially resistant to using such markers of vision loss as a white cane or guide dog, later in life Bollard became involved in the development of the Irish Guide Dogs Association and in producing audio programs for RTÉ and NCBI directed at visionimpaired people in Ireland. Bollard’s memoir is occasioned by the rise of autobiography as a major genre and the development of a disability rights movement in Ireland during the mid-1980s. A radical reassessment of post-independence social policy, revulsion against the abuses of authority, and a new candor in life writing allow stories such as Joe Bollard’s to be published by a well-known trade press. Out of Sight is thus very much

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a book of its own historical moment. Bollard’s discovery late in life of what he deems his most important work, fund-raising and organizing for groups serving blind people in Ireland and elsewhere is also indebted to an altered climate regarding disability. While his memoir says much about its own moment, most of the story concerns his early childhood in Dublin and the years following his return from England in 1957 to take up a musical career. His life and his narrative eventually lead him into the wider world of a national and international blind community enlivened by the disability rights movement, but the story begins in the narrow confines of working-class Dublin, the Irish neighborhoods of Everton and Vauxhall, and the circuits of small dance halls where he performed as a pianist with the Jack Ruane Band. Growing up in the decades after Irish independence, Joe Bollard spent his childhood under severely constrained circumstances. His story echoes other memoirs in depicting the limited opportunities and cultural insularity of the period, as well as a subjection to church-based institutions that was markedly intensified for people who did not or could not conform to religious, economic, behavioral, or physical norms. Like many of their contemporaries in mid-century Ireland, his parents—poor, alcoholic, and only just functionally literate—moved between Ireland and England seeking employment. He and his twelve siblings were for the most part left to raise themselves in the slum districts of Dublin and Liverpool. At four years of age, he was enrolled at St. Mary’s School for the Blind in Merrion, his tuition apparently paid as a voluntary compensation by the doctor whose misjudgment blinded him. Primarily a school for girls, St. Mary’s also offered a residential program for both boys and girls between the ages of four and seven. At the time, a centralized residential school for blind or deaf children was the only option available for those who could not afford private tutoring.11 Although harsh and impersonal, the school provided instruction in Braille by trained teachers, and when the family relocated to Liverpool during the Second World War, Bollard found himself advanced among his peers there. England, however, was an England of Irish neighborhoods and Irish nuns (the nuns at St. Vincent’s School for the Blind in Liverpool were overwhelmingly Irish). His father found employment in the British Army and his mother in the munitions factories, but the family lived in the Everton district, where Irish Catholic institutions and an overwhelmingly Irish Catholic population had been in place since the Great Famine, and where circumstances differed little from the Pearse House Flats they

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had left behind in Dublin. The English towns he later toured with Jack Ruane during the Lenten season, when dancing was forbidden in much of rural Ireland, were Irish enclaves whose homesick inhabitants gathered in clubs and parochial halls to hear the band from Ballina play “The Old Bog Road” and “Danny Boy.” In documenting such a remarkably insular world, Bollard’s narrative speaks for people with disabilities during this era and for the culture more generally. His comments on class also reflect widespread conditions and attitudes, and, perhaps because of the presence of a retrospective narrator, he defines the relationship between class and disability to a greater degree than even O’Casey does. The details of his life story and his reflective commentary highlight how conditions of poverty and powerlessness affect and even cause physical impairments, in addition to hindering rehabilitative, educational, social, and professional opportunities. In turn, physical impairments become disabling factors in social and economic life. People with disabilities, and particularly those without financial resources, often either require or are involuntarily subject to interactions with institutions of church and state, and Bollard emphatically argues that attitudes toward institutional forms of authority derive, at least in part, from ingrained habits of powerlessness. Bollard’s analysis is markedly salient when he reflects on the inaction of his parents during two of the most formative events of his life when their advocacy would have saved him from considerable hardship. Whereas he judges their alcoholism and lack of demonstrable affection toward their children as personal weaknesses, he also understands their reticence to challenge authority to be an enculturated behavior rooted in class consciousness. In Bollard’s judgment, his parents failed to seek adequate compensation when either a misdiagnosis or a botched surgery left him entirely blind; as people near the bottom of the social and economic hierarchy, he argues, they were unaccustomed to self-assertion. A prize student during his adolescence, he is offered a scholarship to Worcester College for the Blind, but the supervising nun at St. Vincent’s School for the Blind deceives his mother by leading her to believe there would be no opportunities for a Catholic boy to attend Mass and convinces her to keep him at St. Vincent’s an extra year. Sometime later, he learns that the nuns intercepted letters from another Catholic student who did take the scholarship (letters which would have revealed that the college provided transportation to Mass for Catholic students) and surmises that the school

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sacrificed his opportunity for a college education so that he might continue to win awards in regional scholastic competitions, thereby enhancing its academic reputation and encouraging charitable contributions. While he criticizes his mother’s timid acceptance of the school’s assertions, he acknowledges her lack of education and her life of hard menial labor and unremitting pregnancy, observing that “she was simply too uneducated, too much in awe of authority and too easily swayed by the nuns to question them” (Bollard 1997, 47). In both cases, his father protests that his class limitations prevented him from doing more for his son, claiming that “he was only a builder’s labourer and wouldn’t be able to afford the money I’d need to ‘keep up with the rest of the college boys”’(47). Much later in life, he writes what Bollard calls a “beautiful letter” of apology that again casts parental failing in class terms: “‘I know I might not have been the greatest father in the world. I’m just a Dublin Jackeen cum soldier cum navvy cum dock labourer’” (74–75). On the one hand, his father’s explanation is entirely inadequate as given in the narrative. On the other, Bollard’s characterization of the letter as “beautiful,” juxtaposed with his father’s earlier passivity, suggests that as writer he offers both an ethical assessment of his father’s acquiescence and an understanding of the potential limits of his moral agency. Although for many years he resented his mother and father’s failure to advocate in his behalf, in retrospect Bollard observes, “She and my father firmly believed in the ‘Us and Them’ system—we being the poor, the working class, the second-class citizens. ‘They’ were the doctors, priests, teachers, policemen—anyone in authority. You never challenged these people or questioned their decisions” (14). In the preface to his foundational study The Making of the English Working Class, E. P Thompson famously argues that class is “a relationship, and not a thing,” not a static entity but an ever-shifting relationship among groups who for variable historical reasons find themselves in opposition. “Class consciousness,” he writes, “is the way in which these experiences are handled in cultural terms: embodied in traditional systems, ideas, and institutional forms” (Thompson 1963, 11, 10). As Michael Pierse has claimed with reference to Ireland, class “is part of a collective and active, organic and historical process of identity formation…it has a culture, a history, a sense of its own existence” (Pierse 2011, 9). It is those traditional relationships to institutions that Bollard sees as most indicative of class, and even more so when disability obliges one to be subject to yet another set of institutions which, because they are also religious, hold an

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authority that is psychological and social as well as political and economic. His wife Sarah was herself raised in a Catholic residential institution for orphans and children removed from their homes; Bollard speculates that their common upbringing as a “public child” was a fundamental bond more profound than the difference in their ability to see. In some circumstances, the features that form a class identity could indeed function as a viable collective identity and a foundation for resistance, as Thompson discovered in his research into social movements in English history. In Out of Sight, however, low-paying employment, meager education, substandard housing, and lack of family planning ingrain in Bollard’s parents submissive attitudinal reflexes that in turn detrimentally affect their son’s financial and professional prospects as an adult. Citing John Fordham’s observation that, in its literature “the workingclass is not bound by the centrality of subjectivity, but rather has a lifeexperience which is determined by a perception of self as object,” Michael Pierse argues that “the worker, in the act of selling labour power, is profoundly aware of the alienation inherent in this process, of his/her position as a supposed ‘commodity’” (40). What Fordham and Pierse identify as a trait of working-class consciousness can also emerge from a disabled person’s consciousness of being perceived and evaluated as a body, and most frequently as an unproductive body. An academically gifted student and an accomplished pianist, Bollard finds that his impairment is itself a commodity that is valued or devalued according to the anticipation of profit by those to whom his labor is given or sold. Having been cheated out of his college scholarship and a path toward upward economic and social mobility, he is condemned to making mats from coconut fiber at the Catholic Blind Asylum, labor that is not only undercompensated, inadequate, and inappropriate but that also endangers the hands which must remain sensitive if he is to eventually make his living as a musician.12 When Jack Ruane hires him to play in his small dance orchestra, other band members assess his value at a lower rate because of his lack of sight, while a local promoter exploits his blindness as a novelty to draw crowds. Even as a musician, he is cognizant that a band must play what people want to hear, and his efforts to convince Ruane to incorporate more rock and roll numbers are less attributable to a desire for self-expression and artistic ambition than to his awareness of himself as a laborer whose hands must produce what can be effectively sold. Although Out of Sight shares with many other memoirs of the period a strong sense of the limitations of post-independence Ireland, it differs

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in several ways. The protagonist’s pursuit of love, vocation, and professional success requires a return to Ireland rather than an escape from it. Its episodic structure steers away from a narrative arc based on recovery from trauma or on some exceptional achievement offered as compensation for privation or disability. Additionally, a number of comedic scenes counter the prevalent bleakness of the literary naturalism that impels most narratives of mid-century Ireland, while at the same time deflecting the impulse to read tragedy into the condition of blindness, whether he is describing himself as a young man stocking up on “French letters” at an English pharmacy to resell at a profit once back in Ireland, or so sexually ignorant that he unknowingly uses one of his sister’s menstrual pads as a bandage (thus inciting her voluble protest), or proposing to Sarah in a scene “like something in a stage-Irish film,” in which the two sit on a low stone wall exchanging promises while a pig roots and grunts behind them (111). Out of Sight also avoids the clichés of battle and darkness, the dramatic intervention of a doctor, teacher, parent, or other nondisabled champion, and the conventionally staged hospital or romantic scenes that can signify heavy-handed editing and the imposition of predictable generic features on recollected experience. The composing process Bollard has described may account for the strong sense of voice and the absence of such hackneyed tropes. “I wrote the autobiography on my computer,” he recalls, “then printed it out in sections of twenty pages and sent the pages to the person who was doing the editing. To be honest there wasn’t a lot of editing to be done. I wrote straight from my head and heart on to the computer.”13 Even the title, which seems to replicate the kind of idiomatic punning common to many titles—Blind Ambition, Sight Unseen, Blind Courage, The Blind Side, Fighting Blind, and so forth—references something more particular. The prefatory verse of the same name describes the routine experiences of being mistaken as intellectually disabled, incapable of ordering his own tea at a café, defiant if asking questions of his social worker, or, as not present at all: “Perhaps they think because I’m out of sight, / They figure that I’m also out of mind” (6). If, as David Bolt has argued, ocular-normative speech creates metaphors of meaning in which blindness invariably indicates lack, here the failure resides with the sighted for whom he exists as a figure beyond the field of vision (Bolt 2016, 17– 22). He is out of their sight because they fail to acknowledge him as an independent adult capable of making his own decisions, engaging in conversation, and deciding his future.

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Writing of her difficulty in finding narrative models for her own story as a blind woman, Georgina Kleege remarks that her reading yielded, with some exceptions, only three kinds of stories: a descent into a terrible darkness, a discovery of wisdom or alternative sensory powers of uncommon strength, or the earnest effort to “reveal the humanity that the blind writer shares with some sighted reader,” the latter tactic frequently undermining itself by inadvertently accentuating “the alien nature of blind experience.” “But the real problem with these works,” she suggests, “may lie in their reliance on linear narrative. Structured around conflict, epiphany, and resolution, these narratives promote the notion that blindness is something one either triumphs over or is defeated by” (Kleege 1999, 3–4).14 It is less blindness per se than class barriers that produce the dramatic conflict in Out of Sight, and his story provides an extended illustration of what for decades has been called the “social model” of disability in that Bollard undergoes no ocular pain, infections, or side effects of any sort; nor does he need to see in order to marry, parent his children, or work as a musician and radio announcer. The obstacles he faces are, again, not factors intrinsic to vision loss except as part of its cultural framing. He must survive the cold and unfeeling atmosphere of a residential school where he was sent because of his sight loss and escape the mat-making factory to which callousness and low expectations have assigned him. He must navigate complete sexual ignorance, the outcome of the prudery typical of the period and what he identifies as a common assumption on the part of the sighted that the blind are essentially sexless.15 At the same time, he must recover from having been lured into a remote upstairs room in which he is violently assaulted and raped by three men, then rebuffed by those from he seeks help. He must find love despite the voiced opinions of others that Sarah’s decision to marry him is a foolish one, and he must struggle toward sobriety and search for sufficient and meaningful work. His story is less one shaped by blindness itself than a story whose struggles are the product of social assumptions that people with sight loss are insignificant, unproductive, and exploitable: a commodity but with limited and expendable value. The oral histories collected by NCBI in 2008 indicate much less awareness of class issues, especially among the younger interviewees. Those thirty-four years of age and older appear to have been more restricted in their educational and professional choices, some having attended residential schools and been employed in a blind workshop. The younger group

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critique what services they received in school by contrasting their experiences with an informed awareness of what resources should be available, and most have gone on to a university. Many of the younger group golf, ride horses, and travel: pastimes associated with a middle-class income or higher. The eldest interviewee, a man of fifty, raises the question of who actually uses the services provided by NCBI and other voluntary and statutory agencies. He reflects, “I know there are others a hundred times worse off, who are not getting the help. Now if they’re in the blind environment in Dublin, it’s up to someone to try to make life a bit more meaningful for these people. I’m lucky, I have my wife and children and my home and job, but I often pinch myself and say, where are the others?” (NCBI, Part 1, 52). According to recent demographic studies, those who live in rural areas, recent immigrants, Travellers, and the urban poor are much less likely to have contact with groups that can provide educational technology and opportunity for social and professional contacts. NCBI made a conscious effort to collect oral history from service users of different genders, regions, and ages, just as they attempt to reach a varied population, but class remains a significant factor in determing who has access to necessary educational adaptations and job training, and, as a consequence, who may go on to publish their stories in a more autonomous and reflective format than that of the anonymous data provider of an institutional research project. In their attention to matters of class, however, the autobiographies of Sean O’Casey and Joe Bollard offer a narrative of embodiment that goes well beyond either data provision or the conventional English-language frameworks of trauma and recovery. As a committed socialist, O’Casey is likely to have consciously constructed his story in accordance with his allegiances, whereas the same degree of political intentionality cannot be ascribed to Joe Bollard. Yet his book, like O’Casey’s, indicates the degree to which memoirs of blindness are also memoirs of labor. The private life is thus discovered within a postcolonial and class-based understanding, offering a crucial perspective on the workings of a society preoccupied with control.

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Notes 1. The problem of undercompensated labor is rampant throughout the socalled sheltered workshop system in many nations and is by no means restricted to vision-impaired workers. Patrick Murray recalls that while he enjoyed working as a tailor’s apprentice in the late 1950s along with two other Deaf workers at the shop in Castlebar to which he was assigned after completing his education at Cabra, he did not realize at the time that he was entitled to public holidays and overtime, or that he could make considerably more money elsewhere (Murray 2015, 72). 2. See Reiss (2015), Phillips (2004), and Tunney (2014). For details of the Irish participation in the march on London, see the anecdotal history presented in Lyons (1999). 3. Among the many articles addressing this issue, see Campbell (1921), Somerville-Large (1944), and Somerville-Large (1964). 4. In 1944, Secretary of Finance J. J. McElligott articulated a broadly held opinion that the subsidizing of health care for the poor would remove “that very proper pride” and “spirit of independence” that had shamed “farmer’s sons and daughters” into finding money to pay for medical care rather than taking the red ticket which, he says, was seen as indicating a “certain loss of caste.” Cited in McKee (1986, 166). 5. D. H. Lawrence to Cynthia Asquith, 28 November 1915, cited in Linet (2013, 39). The passage in full reads, “…there is a living unconscious life. If only we would shut our eyes: if only we were all struck blind, and things vanished from our sight: we should marvel that we had fought and lived for shallow, visionary, peripheral nothingnesses. We should find reality in the darkness.” See Linet (2016) for a detailed inquiry into the meanings of sensory impairment in Modernist fiction. 6. For a discussion of metaphors and images of blindness in Western thought, see Barasch (2001) and Bolt (2016). 7. Building upon the writings of socialist and revolutionary James Connolly, much of the treatment of class in Ireland has analyzed its subject almost exclusively in terms of a nationalist narrative with less attention to landless laborers, the urban working class, or the history of trade unionism than one might anticipate. Historians of the later twentieth century have criticized this focus, although David Lloyd has countered with a sophisticated reading of the dynamics of a colonial (and post-colonial) Irish workforce in the wider development of Atlantic capitalism. See Lloyd (2003). 8. Although not specifically mentioning A Drama in Muslin, O’Casey expresses throughout his letters an admiration for Moore’s novels and autobiographies. 9. As a Protestant Unionist, Susan Casey may have been less inclined than her son to represent class resentment within such a nationalist framing, although it would have been common to do so. For example, noted in

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10. 11.

12.

13.

14.

Marilyn Silverman’s anthropological study of class consciousness is a 1908 newspaper account of a man unable to work owing to “an affliction to his eyes” who was arrested for salmon fishing, the practice of restricting access to salmon streams being long associated with English and AngloIrish landholding families. Protests from individuals and the district council against the imprisonment of a “poor desolate creature who lives in a barn without any friends” engaged in “an honest endeavor to reap the fruits of the Almighty” hold the laws of the Anglo-Irish landlord class to blame for the man’s miserable fate after his arrest without reference to what the community might have done to ameliorate his living conditions and lack of employment prior to his arrest (Silverman 2006, 223, 224). The scene from an unpublished draft of I Knock at the Door is described and partially quoted in Murray (2004, 37–38). Although not directly discussing children with disabilities, in his analysis of ‘the public child’ Robbie Gilligan argues that Ireland slowly shifted toward local community-based care after Vatican II urged Catholic religious to work in the larger community rather than in isolation from the public; the Kennedy report raised concerns about the integrity of residential institutions; membership in the EEC (and later the EU) required greater attention to social reform and human rights; and work with children became increasingly professionalized. In conversation with me during June 2014, Joe Bollard indicated that the parents of children with sight loss played a significant role in ending the centralized residential school system, but that history has not yet been written. See Gilligan (2009). In a group of oral histories collected by NCBI, an interviewee also speaks of the workshops as a dreaded destination with which his teachers at St. Joseph’s threatened their students (NCBI, Part 2, 64). Email to the author, 26 March 2014. In a conversation in June of the same year, he related what he sees in retrospect as a successful but comically naïve adventure in calling Wolfhound Press because of its listing at the back of telephone directory (and reasoning that perhaps the firm received fewer manuscripts because of that), mailing the full text, and shortly afterward being offered a contract during the dessert course of an expensive and highly suspenseful lunch at the Shelbourne Hotel. Although the image of the blind harper might be anticipated in memoirs by Irish people with sight loss, it never appears in any Irish memoirs of sight loss and blindness, or in Kenny’s poems. Even for a professional musician like Joe Bollard, it may have seemed out-of-date and irrelevant. According to Mary Louise O’Donnell, despite the resurgence of the harp as a national symbol during the independence period, the figure of the blind harper had long been relegated to an antiquarian curiosity contrary to a modern sense of nation. See O’Donnell (2014).

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15. David Bolt offers an extended analysis of sexuality and the representation of blindness in The Metanarrative of Blindness; Des Kenny’s poem, “Teaching the Boys to Dance” contrasts the budding desires of adolescents with the charitable practice of organized dances where “Legionary girls/Doing their religious duty” were monitored by “chaperones never taught or who had forgotten/The prelude, social purpose of the dance” (Kenny 2013, 13).

References Barasch, Mosche. 2001. Blindness: The History of a Mental Image in Western Thought. London and New York: Routledge. Boldt, Julius. 1904. Trachoma. London: Hodder and Stoughton. Bollard, Joe. 1997. Out of Sight. Dublin: Wolfhound. Bolt, David. 2016. The Metanarrative of Blindness: A Re-Reading of TwentiethCentury Anglophone Writing. Ann Arbor: The University of Michigan Press. Campbell, Lady Francis. 1921. “Schools and Other Agencies for Assisting the Blind in Great Britain and Ireland,” Outlook for the Blind 15 (1): 50–58. Cleary, Joe. 2007. Outrageous Fortune: Capital and Culture in Modern Ireland. Dublin: Field Day. Fordham, John. 2002. James Hanley: Modernism and the Working Class. Cardiff: Cardiff University Press. Gilligan, Robbie. 2009. “The ‘Public Child’ and the Reluctant State?” Éire Ireland 44 (1–2): 265–90. Holmes, Martha Stoddard and Tod Chambers. 2005. “Thinking through Pain.” Literature and Medicine 24 (1): 127–41. Kenneally, Michael. 1988. Portraying the Self: Sean O’Casey and the Art of Autobiography. Gerrards Cross: Colin Smythe; Totowa, NJ: Barnes & Noble. Kenny, Des. 2013. My Sense of Blind. Dublin: Estuary Books. Kleege, Georgina. 1999. Sight Unseen. New Haven: Yale University Press. Lavery, Francis. 1930. “Trachoma in Ireland.” The Lancet 22: 1163–65. Linet, Maren. 2013. “Blindness and Intimacy in Early Twentieth Century Literature.” Mosaic 46 (3): 27–42. Lloyd, David. 2003. “Rethinking National Marxism: James Connolly and ‘Celtic Communism’.” Interventions 5 (3): 345–370. Lyons, Pat. 1999. A Place in the Sun: A Brief History of the National League of the Blind of Ireland. Dublin: Aquavarra Research. McKee, Eamon. 1986. “Church-State Relations and the Development of Irish Health Policy: The Mother-and-Child Scheme, 1944–53.” Irish Historical Studies 25 (98): 159–94.

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Morris, David B. 1991. The Culture of Pain. Berkeley: University of California Press. Murray, Christopher. 2004. Sean O’Casey: Writer at Work. Montreal: McGillQueen’s University Press. Murray, Patrick. 2015. “My Life.” Clonberne 2015. National Council for the Blind Ireland. 2008. The NCBI Archive Project: Biographies. http://www.ncbi.ie/services/services-for-individuals/ library/archive-project-reports. O’Casey, Sean. 1939. I Knock at the Door: Swift Glances Back at Things That Made Me. New York: Macmillan. ——. 1975. The Letters of Sean O’Casey 1910–41. Vol. 1. Edited by David Krause. New York: Macmillan. O’Donnell, Mary Louise. 2014. Ireland’s Harp: The Shaping of Irish Identity C. 1770–1880. Dublin: University College Dublin Press. Phillips, Gordon. 2004. The Blind in British Society: Charity, State, and Community, c. 1780–1930. Aldershot: Ashgate. Pierse, Michael. 2011. Writing Ireland’s Working Class: Dublin After O’Casey. Basingstoke and New York: Palgrave Macmillan. Reiss, Matthias. 2015. Blind Workers Against Charity: The National League of the Blind in Great Britain and Ireland 1893–1970. Basingstoke and New York: Palgrave. Rodas, Julia Miele. 2009. “On Blindness.” Journal of Literary & Cultural Disability Studies 3 (2): 116–17. Scarry, Elaine. 1985. The Body in Pain: The Making and Unmaking of the World. New York: Oxford University Press. Silverman, Marilyn. 2006. An Irish Working Class: Explorations in Political Economy and Hegemony, 1800–1950. Toronto: University of Toronto Press. Smith, Sidonie and Julia Watson. 2010. Reading Autobiography. 2nd ed. Minneapolis: University of Minnesota Press. Somerville-Large, L. B. 1944. “Dublin’s Eye Hospitals.” The Irish Journal of Medical Science 6: 485–97. ——. 1964. “Dublin’s Eye Hospitals in the 19th Century.” Dublin Historical Record 20 (1): 19–28. Thompson, E. P. 1963. The Making of the English Working Class. London: Gollancz. Tunney, Cathal. 2014. A Sense of the Past: A Social History of Blindness in Northern Ireland. Belfast: RNIB. ——. 2016. Bodies of Modernism: Physical Disability in Transatlantic Modernist Literature. Ann Arbor: University of Michigan Press.

CHAPTER 3

Disability and Testimony: Survival and Activism

In the memoirs of disabled people in Ireland, the testimonial voice may not always involve a traumatic retelling, but it almost always involves speaking of one’s life as a paradigm of others’ lives and speaking in service to a social objective. Noel O’Connell, for example, engages in a purposefully auto-ethnographic practice when relating his memories of growing up Deaf in the last third of the twentieth century.1 Presented within a scholarly investigation of Irish Deaf people’s perceptions of education, his narrative resonates as a variation on a larger group experience: the enforced deprivation of communication skills during the heyday of oralism, physical and sexual abuse while a student at a residential school for Deaf boys, ongoing encounters with discrimination, and the struggle to break through the ableist mentality in which he had been taught to view himself and other Deaf people (O’Connell 2017). Other testimonial narratives cast the life as an exemplum of the writer’s ideological convictions, as in the autobiography of Richard Moore, who was blinded by a British soldier’s bullet while a child in the Creggan district of Derry. Titled after the question Moore’s father desperately asked an attendant surgeon, Can I Give Him My Eyes? (2010) defines its occasion as an effort to shape a social meaning from the individual life.2 Rather than drawing upon the metaphors, allusions, and arcs of narrative prevalent in conventional stories of blindness or allowing his life to be interpreted exclusively as nationalist symbol, Moore traces his growing conviction that his blindness and the circumstances of his wounding could serve as potent signs of the need © The Author(s) 2020 E. Grubgeld, Disability and Life Writing in Post-Independence Ireland, Literary Disability Studies, https://doi.org/10.1007/978-3-030-37246-0_3

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for nonviolent mediation. Introduced by the Dali Lama and published in conjunction with Moore’s Children in Crossfire Foundation, his book employs autobiography as an argument for reconciliatory justice. Most Irish autobiographies involving both physical disability and historical trauma attempt that move toward a collective voice and assert themselves as texts of resistance and encouragement. A reluctance to write autobiographical accounts of disability and trauma except as a collective and ideological witness may result from long-standing cultural prohibitions about personal revelation or being thought “a poor mouth,” as well as a dread of the suspicions that arise when compensation or entitlements are on the table. If, as I have suggested in the introduction, autobiography is a rhetorically constituted act defined largely by its reader’s expectations, then the imagined reader may constrain the life narrative to a degree unmatched in fiction or poetry. Autobiographical texts of all varieties require readers or listeners, real or imagined, to function in ways the speaker may direct but cannot control. Some of those who spoke with Marie Smyth and Marie-Therese Fay in their collection of interviews, Personal Accounts from Northern Ireland’s Troubles: Public Conflict, Private Loss (2000), do so with clear misgivings but they also repeatedly articulate their longing for a listener who is empathetic and attentive, as well as their belief that such listeners are few and far between. One man explains his reticence about speaking and his efforts to hide his injuries: “It is a subject I wouldn’t bring up myself in conversation. I would be reluctant to. I’m that type of a person that would feel that maybe I would be giving them the impression that I was looking for something or that I was playing on my injuries” (35). Much of his interview is given over to the difficulty he experiences in talking about the damage to his body, even to his wife, a nurse, and yet he also describes vividly the “ball or knot in the stomach” that embodies both his physical pain and the anguish with which he feels the injustice of what happened to him. Arthur Frank defines such traumatic recollection as a “chaos narrative”: a circular, perennially self-interrupted and self-negating effort to bring the life into coherence but lacking the ethical structure of other-directedness that would provide enough perspective to rein in its sufferings (Frank 1995, 97–115).3 To say this is by no means to belittle the self-telling of those who live with the serious and enduring effects of violence but to note how powerfully such social trauma can negate a sense of personal agency and perpetuate a repetitive cyclicality in the apprehension of one’s own experience.

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Those life writings that attempt the assertive mode of collective testimony most frequently concern residential institutions. In the wake of the independent living movement, a number of narratives also chart the transition out of institutional life. For many who grew up inside, the years there were indeed traumatic and for others, less so, or varied depending upon the institution in which they resided at different times in their lives. Joan McDonnell’s A Spring in My Step (2004) depicts her longterm hospitalization during the 1950s as disturbing primarily because of the separation from her parents and siblings, at one point a separation lasting three years due to her parents’ inability to afford the trip from Limerick to Dublin. Yet the humorous tenor of her autobiography complicates the question of whether her experience was as benign as depicted, or her memory has chosen to soften the edges, or if her choice of a nostalgic approach to childhood memoir has restricted the range of what she reveals. Most of the life narratives of disabled individuals who were placed in long-term hospitals and other facilities prior to the 1980s address conditions that were barbaric even by the standard of the times. The testimonial aspect of these life narratives speaks of a trauma that has almost nothing to do with impairment as a physical phenomenon but centers instead on the effects of social attitudes as manifested in harsh and often violent regimes. My intent here is not to interrogate testimony’s therapeutic role, evaluate its efficacy as a means to justice, or consider its authenticity. Rather, it is the structure of the testimony as a way of writing about the body and about disability that requires more exploration in the context of life writing. What happens to the body when it becomes the focal point of traumatic retelling? How does one draw meaning from such experience while retaining the privacy associated with personhood and a sense of the self as a moral agent?

Life Narratives and Institutional Lives Although its roots are ancient, the widespread practice of segregating disabled people in restricted spaces comes into force across the Englishspeaking world in the mid-nineteenth century as the state took increasing responsibility for housing those who could not live independently or were not permitted to do so. As is well known, until recently religious orders and private charities managed nearly all residential institutions in Ireland. Although districts often attempted to collect maintenance costs from families, for the most part funding has derived from government

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sources. Institutionalization, whether undertaken with the most compassionate intent or the most malevolent, and whether the focus of a narrative or looming as a threat in the background, forms part of the life writing of all but the most affluent people with disabilities. Even those now living independently or with family express concern over the prospect of an unwanted move to a nursing home if their physical condition changes, relatives become unable to assist them, or a modified living space and sufficient help is not available or affordable. In general, before the mid1980s most disabled people either stayed in the parental home under the care of their mothers well into adulthood or were sent early to long-term hospitals, special schools, and group homes. District boards were much more likely to extract children from the home than provide in-home services, as either as a means to cut local costs or because the family had been judged unable to provide adequate food and sanitation. A diagnosis of tuberculosis or rickets (a nutritional deficiency endemic in Ireland until the mid-twentieth century) often led to removal because of the danger of contagion and the necessity for a restorative diet, and, in the case of rickets, sunlight. Bone and joint tuberculosis and orthopedic damage from rickets frequently required years of surgeries and physical therapies as well. In some cases, objections to a parent’s way of life, especially concerning sexual behavior, also led to a disabled child’s removal.4 Those who came from large, poor families were more likely to spend extended time at places that provided little rehabilitation or training to live outside them and were blighted by the draconian discipline and abusive practices with which we are now familiar.5 Just as poverty can cause disabilities, so the conditions of institutional life could produce physical damage like chronic bowel prolapse from years of forced toileting, hearing loss derived from being hit on the eardrum as punishment, dental deterioration due to lack of hygiene and inadequate nutrition, or orthopedic damage caused by intentional abuse or careless handling. Sharon Snyder and David Mitchell (2006) have characterized even the best institutions as disciplining spaces that classify specific corporalities as disabilities; segregate disabled people from the general population; constrain sexual, emotional, and political development; and emphasize the mastery of rote physical skills. Although the eugenicist philosophy that governed disability institutions in many countries did not manifest itself as involuntary sterilization and abortion in Catholic Ireland, Patrick McDonnell (2007) has established how social segregation and enforced

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celibacy effected some of the same results.6 Additionally, many children with disabilities were improperly housed in industrial schools and along with adults, particularly Deaf adults, in mental institutions. Josephine O’Leary recalls that when the onset of meningitis rendered her deaf as a child in the 1950s, the local doctor advised that she “be put in the local mental hospital (as was the habit those days for many people with disabilities).” The practice was less uncommon than was her mother’s refusal to obey his directives (O’Leary 2002, 18).7 Children with disabilities usually remained in institutions until adulthood if their parents would or could not care for them (Maguire 2009, 106). Rarely did they receive appropriate care or training, and even former residents of hospitals or schools specifically set up for disabled children recall severe corporal punishments for physical differences such as being unable to lift one’s arms, tie shoes, control the bowels or urinary function, curtail involuntary tremors, or speak in a socially normative voice.8

The God Squad Paddy Doyle’s The God Squad (1988) was one of the first memoirs of the industrial school system to which he was consigned as an orphaned child of four. The God Squad narrates a difficult embodiment from the perspective of a child, with only occasional reflective comments from the time of composition. In a novelistic style that creates dramatic tension, detailed scenes, and dialogue based upon what are presumably fragments of memory, he depicts the world of those at the very bottom of a class hierarchy: destitute children without familial or social supports, without money, influence, or the expectation of melioration. The God Squad has its share of brutality both psychic and physical, as well as unflinchingly vivid descriptions of the body’s abjection. Yet it is not only the details of his story that have made this book historically important. In her discussion of the thousands of letters sent to Nuala O’Faolain from Irish women who felt their lives mirrored in the first of her two autobiographies, Are You Somebody? (1996), Eibhlin Evans contends that “there is nothing intrinsically radical or significant in telling all in writing. If, on the other hand, an autobiography takes account of the cultural and political climate of its subject’s life….if it, in effect, becomes a chronicle of wider history, it can be become a decisive political gesture” (Evans 2002, 52). Paddy Doyle’s memoir of his years at an industrial school and extended stay

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hospitals has achieved the status of a political gesture through its selfpresentation as a collective rather than confessional text. Whether voicing their experience in testimony given to an investigative commission, a blog, a self-published memoir, or a full-length autobiography published by a trade press, many of those who have spoken or written about institutionalization have announced what Sidonie Smith and Julia Watson call “the affirmation of the duty to narrate a collective story.” The teller of the story positions her- or himself as a representative subject, affirming the urgency of telling an experiential history that stands in for the unspoken narratives of other victims of the same rights violation. The obligation to narrate involves several rhetorical acts: documenting the fates of the dead, speaking for those who cannot speak, registering the difficulty of remembering a traumatic past, and memorializing the dead by producing a counter-history to official narratives of an event or everyday conditions of life. (Smith and Watson 2012, 594)

Those who came before the hearings of the Commission to Enquire into Child Abuse express similar motives: In addition to hoping that their testimony might bring release from ongoing problems traceable to the maltreatment they endured and that some practical assistance might be available through educational or vocational training as part of a redress program, they also express hope that their testimony might speak for others unable to tell their stories, prevent future abuses, and bring perpetrators to justice.9 In the preface to The God Squad—and contradicting the advertisement of the Corgi paperback edition as “the story of one child’s triumph over adversity”—Doyle explains how the yearning to understand his origins became a chronicle of something much larger than himself: “It is about society’s abdication of responsibility to a child,” he asserts. “The fact that I was the child, and that the book is about my life is largely irrelevant. The probability is that there were, and still are, thousands of ‘mes’” (12). After his mother’s death from cancer and the suicide of his father, a district court sentenced four-year-old Paddy to seven years in St. Michael’s Industrial School in Cappoquin, Co. Wexford. He began to manifest symptoms of a condition much later diagnosed as generalized dystonia, a rare neurological disorder producing chronic involuntary motion and painful muscular spasms.10 Told that he “refuse[d] to walk

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properly” (106), he was reprimanded and punished at the industrial school for his increasing lack of motor control and incontinence, both symptoms of his physical problems and the extreme nervousness ensuing from the circumstances of his history and the institution into which he was placed. Doyle considers the book to be about child abuse within the residential institutions rather than about disability, and yet within the world of the industrial school, merely having a body is to be disabled, with or without physical impairments.11 The body as represented in The God Squad is marked by scars, sores, and the evidence of its own wastes. What in other situations and other texts might be unremarked as ordinary bodily function here yields disgust and degradation. Recoiling from bodily functions generally viewed as private, adults in authority render them the objects of ongoing scrutiny. Sexual maturation is sharply monitored; boys are placed on rows of toilets and threatened until their bowels move, sometimes in painful and bloody ways; and toileting accidents result in severe punishments and public disgrace. The sexual molestation of which he accuses the managing nun bewilders the child who has no contextual narrative into which he can place her touching the parts of the body he has been taught never to touch himself. The recollected child is surrounded by the smells and signs of his own body and that of others: their sexual bodies, their disabled bodies, and their body that must shed wastes. Troubling his dreams is the image of a dead man’s body “trembling violently as it hung from a short length of rope tied to an alder tree” (54): a memory, apparently of his father, that is refigured later as the corpses of those who die around him in hospitals. The child appears at the limits of his subjectivity; unable to control his own body or those around him, he cannot distinguish himself from putrefaction. Julia Kristeva has claimed that drive to separate oneself from that which is abject and cannot be “integrated with a given system of signs” forms a critical action of identity construction and that the inability to fully do so exposes the fragility of a human identity (Kristeva 1982, 14). Here, the difficulty is exacerbated by the ubiquitous presence of that which is deemed abject, resultant from a lack of privacy that derives from a lack of power. Kristeva writes, …refuse and corpses show me what I permanently thrust aside in order to live. These body fluids, this defilement, this shit are what life withstands, hardly and with difficulty, on the part of death. There, I am at the border of my condition as a living being….Such wastes drop so that I might

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live, until, from loss to loss, nothing remains in me and my entire body falls beyond the limit—cadere, cadaver. If dung signifies the other side of the border, the place where I am not and which permits me to be, the corpse, the most sickening of wastes, is a border that has encroached upon everything. It is no longer I who expel. “I” is expelled (3–4).

The separation between self and waste which Kristeva sees as essential to being (and yet never complete or secure) cannot transpire at all in Doyle’s childhood narrative. Rather than “the place where I am not and which permits me to be,” the putrefying world is the place to which he is repeatedly assigned, named as less than human by his tormenters every time his body or the memory of his father’s corpse makes itself known. The disabled body can neither conform and be governed, nor under such harrowing circumstances can it be “self-reliant.” Rosemarie Garland Thomson has traced the causal connections between an ethic of selfreliance and nineteenth-century obsessions with cleanliness, sexual temperance, and bowel regulation: To have a body that is neither governable nor independent is a condition unaccounted for in orthodox formulations of masculinity, health, and citizenship (Garland Thomson 1997, 44). Maria Luddy’s exploration of the early years of the Irish NSPCC reveals that dirt—and the dirty body—became the focus of many investigative reports concerning child neglect. In the eyes of the agency and its inspectors, not only was dirt an indication of neglect, it was also a cause of neglect. The society recognized that in Dublin at least, the majority of abusers were residents of one-roomed tenements, “the general condition of all being filthy and most insanitary.” The result was that “people become callous to all sense of feeling, cleanliness and decency and the children reap the harvest of suffering and wrong.” (Luddy 2009, 84)

Dirt, then, cannot be eradicated by soap; like bodily wastes, it is figured as a moral excrescence. As middle-class domestic space partitioned bathing and toileting spaces, as well as the segregated parental bedroom, independence, selfreliance, and moral virtue also become associated with private space and the ability to hide one’s bodily acts within such space. According to Paul John Eakin’s extended discussion of privacy and the ethics of autobiography, philosophers and legal scholars tend to agree that privacy is

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“a precondition of personshood” and that “space or social distance is precondition of privacy” (Eakin 1998, 162–63). Yet for many disabled people, toileting, bathing, dressing, and even sex require assistance. If a culture of physical shame insists that acts of bodily function when performed in front of another person constitute a mutual violation of privacy, those very acts are rendered disabling social impairments. Excessive, even pathological, concern with bodily privacy, as illustrated so graphically in The God Squad and other such memoirs, paradoxically leads to its further violation, more so than any actual exposure of the flesh. Similarly, testimony collected in Mary Rafferty and Eoin O’Sullivan’s Suffer the Little Children (1999) and given before the Ryan Commission by a wide range of people who had lived within residential institutions, including former inhabitants of hospitals and schools for the Deaf and vision-impaired, speak of the ways toileting accidents, often the consequence of specific physical impairments, were answered with punishments that involved public nudity and the display of soiled garments and sheets. Explaining that toileting accidents were presumed to be a form of disobedience, Rafferty and O’Sullivan echo statements by those former residents of industrial schools whom they interviewed (234). Noel O’Connell’s recollection of his early years at Mary Immaculate School for Deaf Boys, Beech Park, incorporates several such scenes. As in David Lane’s memoir, in which symptomatic incontinence is punished as if it were misbehavior, O’Connell writes of boys being beaten for failure to move their bowels, as well as having lost control of their bowels after receiving laxatives from the staff (O’Connell 2017, 61–66, 71). The lack of training in child physiology and psychology among the adults who staffed various kinds of residential institutions explains in part their presumption of willful disobedience and the otherwise puzzling failure to supply incontinence pads.12 Rafferty and O’Sullivan also note that the damp climate and lack of automatic dryers and supplemental linens meant that wet beds and clothing were a heavy burden on the staff (235). Yet none of these explanations fully answers the question of why such violent and hysterical reactions ensued following what in the case of disabled children was an explicitly defined symptom of specific impairments. Kristeva’s psychoanalytic analysis and the historical association of the uncontrolled body with dirt, moral disorder, and social chaos offer some possible, if partial, answers. Because a socialized revulsion at the “private” results in the abjection of the human subject, the broken taboo inculcates guilt and shame, the

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inmate having produced the wastes and the guardian having been subject to the presence of that which is taboo. The hysterical reaction of the caretakers suggests that rather than experiencing the kind of power that Foucault attributes to the observer, they felt themselves morally injured by their proximity to wastes.13 Ideally, privacy and exposure could be imagined in a radically different way. American legal scholar Robert C. Post contends that the monumental Supreme Court decision of 1890 in which Justices Warren and Brandeis extended the right to privacy beyond matters of property to what they termed “an inviolate personality” could potentially lead toward a reconsideration of privacy less as a matter of “empirical distance than…a moral characterization.” “So conceived,” he argues, “privacy does not refer to an objective physical space of secrecy, solitude, or anonymity, but rather to the forms of respect that we owe to each other as members of a common community. Personality is violated when these forms of respect are transgressed” (Post 1991, par. 27; par. 30).14 When respect is in place, then contact with the body need not be transgressive of privacy. If, however, exposure of one’s own body and exposure to another’s body—and in particular to its bodily wastes or sexual function—generates a moral crisis, then the very foundation of the moral self is shaken, both for the one who exposes and the one to whom the body has been exposed. As his disability becomes more prominent, Doyle is removed to a series of hospitals in which death, rather than wastes, challenges his sense of self. The notoriety of The God Squad rests on its exposure of the industrial school system, but slightly more than half the story takes place after Doyle left Cappoquin for various hospitals where doctors attempted different treatments. Within those hospitals, he is fed adequately, kept clean, and often treated with gentleness by the staff, but he also endures multiple surgeries, is regularly administered phenobarbital as a balm for his recurrent nightmares, and his psychological condition is never addressed. In this section of the book, there are no more beatings, molestations, or intentional humiliations, but the recollected child remains alienated and subject to unnerving dreams and fears. Although at each move to a different location he regrets the departure from what has become familiar, at no point does life feel safe or even routine. Nor is the outside world any more comforting. A young nurse and her fiancé take him for afternoon at the zoo, but the outing is physically excruciating and leaves him feeling like a zoo animal himself, subject to the stares of others. An invitation to Christmas festivities extended by the consultant neurologist results in an

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awkward evening in which “everything that went on was alien to me, the food was unlike anything I had ever tasted before. I was confused by the variety of knives, forks, and spoons around my plate, never sure which one to use” (183). Like an anxious traveler alone in a strange country, he is frightened by the flying colored papers that pop out of the Christmas crackers and baffled by the ceremonious entry of the Christmas pudding, “a secret ritual…obviously a family tradition to which they attached great importance” (184). To Paddy Doyle’s childhood self, no respite from violence alone can cure the terrors of shame, abandonment, and the fear of death and eternal damnation. The child is always wary and never at rest. Nevertheless, the hospitals expose him to perspectives that differ from those governing his few relatives and the institutions in which he has lived since early childhood. He meets a Protestant, who should be a wicked lost soul but who appears agreeable and content; he converses with an avowed agnostic; and several of the lay nurses, although Catholic, are themselves rebellious against the regime and the views of the nuns with whom they work. In these sections of the text, Doyle portrays dramatically rather than through reflective exposition the roots of his gradual release from a suspicion that his soul is hovering at the edge of hell. Each time he had attempted some rebellion or subterfuge at Cappoquin, no matter how small, he was met with punishment and, of even greater consequence to his sense of self, the accusation of being possessed by Satan. This sense of oneself as damned bears no resemblance to anti-heroic grandeur; for the child, it is another experience of abjection, of a self equivalent to that which has been cast out. Children have few choices in general; an institutionalized child (or adult) has fewer; and a child who is said to be possessed has none at all. If one can proceed only reactively, and if that reaction results from possession by some exterior force, like God or Satan, then the self is a cipher, a body without sovereignty. Ernst van Alphen notes in the testimonies of some survivors of the Nazi Holocaust the disappearance of a continuous selfhood: an extreme disconnection between the “I” who tells of events in the past and the “I” who participated in events which are so morally repugnant that to identify past and present self as one would be psychically unbearable, if not impossible. “In Western culture,” he argues, the individual subject is held responsible for his or her own acts and, hence, destiny to an important degree. It is precisely this sense of individual responsibility that allows one to form one’s own subjectivity by means

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of consciously chosen behavior. When one does not make any conscious choices, one is in fact not 100 percent a subject. ….In order not to be disqualified as a full subject, the only solution was to abandon the concept of subjectivity on which such a disqualification rested. (Van Alphen 1997, 48)

Van Alphen discovers in the incapacity to exercise choices a “total negation of any actantial position or subjectivity” and concludes that “a killed self has no experiences, much less narratable memories” (45; 50). Perhaps because the negation of subjectivity rooted in the displacement of agency onto external forces, human or divine, plays out within a child self rather than an adult (of whom a higher degree of autonomy might be expected), Doyle is able to mark a clear distinction between the traumatized child and the morally engaged adult who speaks from the standpoint of release from a system of belief that had undermined his subjectivity . He spends the next years mostly surrounded by dying old men until being transferred to Baldoyle, and finally to the orthopedic center at Cappagh, where for the first time he grows physically and emotionally strong. Now in his teens, he meets with a social worker who helps him prepare to leave. “When the day came,” he reflects, “I was desperately sad and uncertain about the world I was heading into. I had been in institutional care for most of my life” (234). Happily, he is fostered out to a warm and welcoming family. Although still in school, he eventually moves into his own flat: “I wanted to challenge life,” he affirms. “The flat was my ‘house,’ there was a sense of ownership about it and I could bring people in when I liked without feeling I was intruding on anyone….There were times when the flat was a lonely place. I wrote a little when I couldn’t afford to go out or didn’t feel like visiting anyone” (234). A small allowance from the state goes to rent and a diet of cornflakes and eggs. Daily he wheels himself to the Synge Street Christian Brothers School and works hard enough to compensate for the years without any education at all. Whether he had assistance in the flat or managed entirely on his own, he does not say. The narrative movement to adulthood in The God Squad happens rapidly: The better life at hospital for older boys, placement in a nurturing foster home, and eventual independence all transpire within a few pages. This portion of the text is compressed, with decades flying by in a few sentences because his real subject, as he declares, is “society’s abdication

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of responsibility to a child” (12). Now educated, married, and a father, the narrator moves into present tense as he types his final sentences, the trains rushing by his home reminding him of the trains he would hear as a child, an echo of the past heard first when he and his wife bought the house together some years before: “Looking out the bay window, I fleetingly remembered St. Michael’s Industrial School. I am typing these words in that same room where trains and granite walls are as close to me now as they were thirty years ago in Cappoquin. I had never been loved there. I am here” (236). Thus concluding at the moment of its composition, The God Squad speaks neither in denial of the body’s materiality nor in subservience to its traumatized history.

Inside the Institution: David Lane The God Squad and Noel O’Connell’s Belonging (2017) are the only fulllength Irish memoirs of which I am aware that bring disability together with institutionalization and child abuse, although many others also describe what today’s standards would judge unacceptable corporal punishments and a striking disregard for a child’s psychological well-being. David Lane has written a narrative concerning his life in St. Joseph’s Orthopaedic Hospital in Coole that, while not as fully developed as a longer work might be, nevertheless incorporates all three elements.15 Tales from the Institution: The David Lane Story is of remarkable historical value in its description of daily events inside a mid-century Irish residential hospital. It offers a rich sociological portrait of the boys who lived there, the lay nurses, and the nuns who supervised them. It presents a child’s view of the educational methods of the school, the achievements and limitations of the hospital’s rehabilitative aspect, and the close relationship between its routines and celebrations and those of the Catholic Church. The reader learns how Mass, First Communions, and Christmas were celebrated inside and of the interaction between nuns and lay staff, the outdoor sports and inside games and festivities, the objects and foods that were coveted or disdained, friendships and rivalries between boys, the kinds of relationships that arose between children and adults, and the sharp distinctions between the relatively mild atmosphere of the children’s ward and the harsh administration of the ward for older boys. While emanating from very specific time and place, the stories and scenes presented are kin to those of childhood autobiography in general; even the high

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level of detail reflects what Richard Coe calls the “inventories of a small world” characteristic of childhood memoirs in numerous countries (Coe 1984, 205). Although it is difficult to perceive a distinct personality in either the narrative voice or the recollected child, the events and people depicted are particularized and memorable, and David Lane succeeds in communicating some sense of what mattered to that child, or any similar child who inhabits a challenging body in a place that seeks to discipline such bodies within its walls. The history of his family’s circumstances appears to be based upon conversations with relatives concerning how he came to live for eighteen years in a residential hospital. In the summer of 1955, Lane’s mother was dismissed from a maternity ward with a baby whose condition she did not understand and had not fully seen, and with no instructions or assistance for his care. After beholding for the first time the large bulge of exposed spinal cord in a transparent sac of spinal fluid protruding from his lower back, she sought help from a terrified neighbor and an astonished village doctor. The specialist to whom she was referred declared that her newborn (and his infant sister who had developed rickets through nutritional deficiency) would never walk and must be taken to live in a residential hospital a sizeable distance away. Although he was returned home eight years later, his family’s poverty, worsened by his father’s arrest and incarceration, meant that after a few months the family was deemed unfit and he was brought back to St. Joseph’s Hospital at Coole. Class, again, proves a determining factor in who remains at home, who attends a private school, and who grows up in a residential facility. The rhythm of his narrative alternates among incidents of wildly excessive punishments, routine corporal punishments, moments of loneliness for his mother and siblings, and, in marked contrast, anecdotes about festivities, outings, friendships, and treats. Framing his story are two selfconsciously repugnant scenes of wretchedness: one a prolonged description of the terrifying response of one of the nurses after a bowel accident and the other a depiction of the weekly enemas to which he and two other boys were subjected together. The latter is still a standard treatment for infants and very young children with certain types of spina bifida, but at this point in his story, David and the other boys are at least eleven years old and have moved into the ward for older boys. Their lack of privacy conjoined with the vocal and vehement repugnance of those administering the procedure render the process emotionally disturbing.

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Bodily wastes again provoke callousness at best and savage cruelty at worst in those assigned as caretakers, even in an orthopedic hospital where incontinence would be expected as an ongoing symptom. When David makes a first confession, mistakes and misapprehensions at first confessions being a common and often comic element of Catholic childhood narratives, he confesses having wet the bed. Although the scene is treated humorously, especially when David confides his blunder to a friend who cannot resist telling the other boys, it yet indicates how fully the children were taught to view the manifestations of their disabilities with shame. Lane explains in a 2009 interview that the memories of abuse have never, and could never, disappear or cease to have detrimental effects, but that he also has good memories of “attentive and caring” staff. He attributes the cruelty he endured to “bad apples in the Church,” particularly the ferocious Sister Bernard who regularly beat children with a stick and on one occasion battered his hands with scissors until the nails cracked, a punishment for having lied about dropping the ice cream he was to have given the hospital handyman (Fegan 2009). Beginning with a swat from her stick, the punishment rises in intensity as David becomes too frightened to explain why he had lied and she begins to be caught up in the repetition of her litany, “you must never lie to a nun” (Lane 2011, Sec. 8). The scene indicates how what was at mid-century considered an acceptable corporal punishment could escalate precipitously when perverse individuals like Sister Bernard were not held accountable because their victims were powerless children of the lower class. Whereas Tales for the Institution may be most valuable for the social historian in its revelation of daily routines and rituals, its consequence as a narrative lies in the lows and highs that it poignantly relates. In her 1939 essay “A Sketch of the Past,” Virginia Woolf speculates that while much of life is encased in a “cotton wool” of forgetfulness, we remember with greatest intensity those moments in which we felt horror or ecstasy; we apprehend dissolution or glimpse a wholeness of which we are part (Woolf 1985, 70–73). The repeated acts of humiliation remain in Lane’s memory, but so do other gestures that go beyond the kind of sustenance that simply maintains life: thus the story of a nurse who evades her superior’s questions in order to protect David from discipline she considers unfair, another child’s offer of candy as comfort after the scissors attack (itself ironically triggered by Sister Bernard’s generous wish to send ice cream to the handyman), or the sweets a nurse puts under his pillow the

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night before he faces a dreaded surgery. References to sweets (twentysix altogether, although some sweets are distributed as rewards or withheld as punishments rather than freely given) leap out of the narrative as what Roland Barthes calls a punctum within a photograph: the small, accidental element that co-exists with the socially recognizable subject matter (studium) of the picture and rises to move the viewer’s emotion and thought, generally without intention on the part of the photographer or anticipation on the part of the viewer: “It is not I who seek it out (as I invest the field of the studium with my sovereign consciousness),” Barthes explains. “It is this element which rises from the scene, shoots out of it like an arrow, and pierces me….The photographs I am speaking of are in effect punctuated, sometimes even speckled with these sensitive points; precisely, these marks, these wounds are so many points ” (Barthes 1981, 26–27). In a memoir that often lacks interiority, this pattern of repetition “rises” to express much about the isolation and limited life for which a childlike David was being prepared and about the ways children like him managed to survive. A memory of being given sweets is more than nostalgia for appetitive pleasures; the gifts are crucial tokens of human affection in an otherwise impersonal setting, signs that there is more to be expected from the world than an impoverished child with spina bifida living in a state-funded institution might otherwise anticipate.

The Freedom to Do My Own Washing: Narratives of Independent Living On the 31st of July 1957, Joe Bollard set out alone on the ferry from England to Dublin, where he had not lived since early childhood, then found the train to Ballina for an interview with the Jack Ruane Band: Here I was, at twenty-one years of age, on the threshold of a new life. I should have been excited, but as I sat on the deck of the Dublin boat that night, I felt desperately lost and alone…What had I done? I’d shut the door on a life which, although perhaps not the happiest in the world, at least had some sort of security, and now I was on my own. I was setting out on an adventure, broke, baffled and blind. (Bollard 1997, 75–76)

Warned against leaving the dormitory and workshop where he had been consigned to make mats after graduating from St. Vincent’s School for the Blind, he had managed to support himself as a musician while living with

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his parents in Liverpool. Yearning to do more with his life, he answered an advertisement for a pianist in the west of Ireland and made his way. As a young man, he may have been ignorant of the world, but he was driven by the desire to have the career of his choice and to experience a fuller life than that afforded by the Catholic Blind Asylum. His mother’s response to his decision indicates the expectation of dependency against which he struggled: “‘Who’s going to look after you?…There’s nobody in Ireland who could take care of you, and your Uncle Dickie’s at work all day–he wouldn’t be able to mind you’” (72). Similarly, Noel O’Connell’s story of leaving the safe world of the Civil Service for graduate programs in literature and social science includes the troubling memory of his father’s insistence that a Deaf person would fail at these endeavors, particularly if he renounced oralism as O’Connell chose to do (O’Connell 2017). Joe Bollard’s decision to leave the sheltered workshop led toward a fulfilling career, a family of his own, and the later adventure of transatlantic travels. O’Connell’s decision to follow his ambitions brought him the academic successes he hoped for. However, other memoirs suggest that independence can also involve certain necessary and constructive dependencies, just as independent living need not be restricted to detached housing and apartments, or mobility require voluntarily moving far from one’s place of origin. To consider the meaning and significance of independence is also to think more critically about the sway that dominant discourses hold over the shape of a life story. Conventional expectations regard disability narratives as either individualistic stories of unusual achievement or stories of trauma and its accompanying position of abjection. Stories of lives spent within residential institutions, in Ireland and elsewhere, often expose physical and sexual abuse and a traumatized subject. The body as abject appears to have replaced years of silence on the body. Yet running counter to those two kinds of narratives is a history of significant social activism on the part of disabled people. Although a history of the disability rights movement in Ireland has yet to be written, a claim can be made that almost every inch forward toward independent living has resulted from direct action by disabled people themselves. The Irish Wheelchair Association, for example, came together as a self-help group in 1960 and by the mid-1970s had expanded its work from such efforts as cultivating a Paralympic team, operating a driving school, and holding regular social events to effective lobbying for changes in law and public policy, particularly in the areas of housing, mobility, and adequate home care.

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The Centre for Independent Living, conceived in the late 1980s and still an activist voice in its new incarnation as the Independent Living Movement Ireland, adapted some of the strategies of the independent living movements in Boston and Berkley to push for action in areas of housing, transportation, education, the removal of architectural barriers, and the provision of home care. They lobby, pilot programs to test effectiveness, collect data, apply for EU funding, provide information sessions and videos, and engage in public protest and acts of civil disobedience. Local coalitions of disabled people like the Newbridge and Naas Access Groups have worked to remove physical barriers. In 2018, the Dáil at long last ratified the 2006 United Nations Convention on the Rights of Persons with Disabilities, which asserts in Article 19 the right of individuals to “choose their place of residence and where and with whom they live on an equal basis with others.”16 This history nudges writer and reader to step aside from the expectation of abjection and urges the abandonment of yet another generic formulation, the tale of “overcoming” one’s own body. The conflict in these life writings does not lie between one’s ambitions and one’s body; the conflict lies instead between one’s ambitions for independence, however the term is imagined, and socially imposed restrictions. In short, we must read against the expectation of trauma and against an anticipated plot line that pits the speaker in a contest against her own body. It can be difficult to ascertain what independent living in Ireland means in concrete terms. Some assessments as to the number of individuals living in what are called “congregated settings” include nursing homes, while others inexplicably do not. Some include partially residential schools, while others do not. Some define “congregated settings” as sites where four disabled people live in one unit; other demographic profiles lift that minimum to ten. Some discussions of independent living include unmodified private housing and little or no home help or personal assistance, and others include individuals who live in a family home assisted by relatives, while still other studies look exclusively at those living in apartment units built for this purpose and clustered together in small groups. Some figures distinguish among intellectual, psychological, and primarily physical disabilities, but others do not. Despite a plethora of research on disability in Ireland, it remains difficult to find reliable and consistent demographics. Nevertheless, we can still inquire as to how those most directly involved in this movement toward independence perceive that concept as an experience or aspiration.

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In many ways, these are stories of “my bondage and my freedom,” and the title of Frederick Douglass’s 1855 autobiography serves here as a cautionary note. The American slave narrative tells of crossing a geographic boundary that did not necessarily insure freedom and reaching places that were often lonely and dangerous. Those escaping slavery made such a crossing with great trepidation and, in some cases, misgivings. Although freedom from slavery may constitute an absolute ethical value, stories of crossing over into what is often called “supported social housing” suggest that as fine a goal as that may be, it is best imagined as one of many strategies for living. Tom Shakespeare goes further to argue that “any solution to the dilemma of care should not be seen as an end in itself, but as a means to an end…. Different ways of providing support are not just different means to the same end, but often represent different means to reach different ends. The desirability of these different ends may depend on the particular idea of the good life which an individual or their family adopts” (Shakespeare 2013, 150). Recent work in Irish cultural criticism has questioned revisionist orthodoxy in asking whether an excess of individualism, loss of community (and the stigmatization of staying in place), and global consumerism have replaced the older problems of conformity, insularity and deprivation, warning, as does Joe Cleary, of “the matrix of oppressive and emancipatory forces at work in every period of modernity” and of the need “to be attentive to how even the most emancipatory developments can sometimes collude with or be commandeered by the regressive” (Cleary 2007, 7). In the context of disability, Shakespeare has observed that “The care debate takes place within a society in which individuality and freedom are ever more strongly prioritized. Privacy and choice have become important values, and collectivism and interdependence seem to be out of fashion. It may be no coincidence that the disability movement’s stress on independence and autonomy has coincided with the resurgence of the free market and of privatization” (137). Social housing without transportation, particularly in rural areas, can prove more segregated than a congregated setting in which one has daily interactions with others and access to the surrounding neighborhood. In some cases, it may also be true that, as Chris Drinkwater warns, supported social housing is “not an emancipation, nor even a humanitarian reform, as much as a new dispersal of power relations” involving excessive surveillance and regimentation of the private household (Drinkwater 2005, 229). To imagine independent living as the panacea for every disabled person is to grossly oversimplify the

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varieties of need and to create a false equivalency between freedom and physical autonomy . With those cautionary remarks in mind, I turn now to the only booklength narrative that focuses upon the shift from an institutional setting to independent living. A small but engaging self-published volume entitled Mossie’s Story recounts a life that, like Joe Bollard’s, is paradigmatic of both the conditions of mid-century Ireland and the seismic shifts in latecentury Irish culture. Mossie Forde’s father was a farm laborer who rented a two-room house for his wife and twelve children in a rural area northwest of Dublin. Like the mother of David Lane, her mother came home from a maternity hospital in 1949 with an unmistakably distressed infant but no advice or explanations of her child’s condition. Her mother knew something was amiss; Mossie had difficulty swallowing and required feeding through a syringe. At four, she still did not speak and crawled rather than walked over the mud floor of the house. Yet not until a visiting priest noticed her lack of physical development and arranged for her examination did she receive a diagnosis of cerebral palsy. She began to attend sessions at the newly established Marino Clinic in Bray, from its an inception a progressive facility emphasizing life skills and enabling its patients to go home for visits whenever possible. When the local county council decided her transportation to the Marino Clinic was too expensive, the council sent her as an eight-year-old child to St. Joseph’s Orthopaedic in a remote section of County Westmeath, where her education and home visits ceased. The hospital, now closed, was the site of David Lane’s childhood and figures in the 1999 documentary States of Fear and the testimonies given during the hearings of the Ryan Commission. This period of her life Forde calls “8 years of hell” (Forde 2010, 9). Although the Marino clinic had taught her how to feed, toilet, and dress herself, she was forbidden to do so in the new setting, and even more than the atrocious food and unpredictable punishments, her loss of independence was galling. “It was disheartening for me that something I had taken so long and so much effort to achieve was taken away from me,” she writes. “Something so precious to me was taken away in the cruelest fashion. They seemed determined to dismantle me and leave me dependent and helpless. These were feelings that I thought I’d never have again” (11). Those in charge, she maintains, made it clear who was important, and “had less time for you if you were poor to go along with the disability” (14). Martin Naughton, the activist and founding member of the Centre for Independent Living, has recalled of his own upbringing in St.

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Mary’s Hospital in Baldoyle: “There was a good understanding amongst staff and patients of who had nobody, who had people hardly worth talking about, and who had people who might be somebody” (Marsden 2010, 91). A 1948 report on St. Joseph’s School for Deaf Boys at Cabra observed that staff and students whose full fees were paid by their parents received plentiful and much better quality meals than the rest of the boys; those meals were even produced in an entirely separate kitchen (Commission 2009, 13.29). Such differences appear to have been common in residential institutions. Additionally, those who came from families with greater resources were less likely to be placed in long-term residential schools or hospitals or spent shorter periods of time there. Institutionalized until her fifteenth birthday, Mossie Forde then returned to live with her family and despite sleeping four to a bed and the lack of plumbing, she describes this period as one of happiness and activity. After the death of her parents, she had nowhere to go but to a nursing home. Of greatest significance in this text is Forde’s own analysis of the meaning of her move from the nursing home, where she describes herself as well-treated, to an apartment, one of a cluster of units built to be suitable for a wheelchair user and served by employees of Enable Ireland. It is also important to consider what her move to independent living does not mean. In her case, it cannot mean the absence of assistance, and others who live in self-contained apartments or other social housing speak as she does of having both independence and care. A man interviewed in an Irish Times story about the 50th anniversary of the Cheshire Homes lives “independently with a roster of support workers” after twelve years in a nursing home following a spinal cord injury. His care assistants drive him to work, and he enthusiastically reports that “I can decide my own menu. I get up when I want to” and “I always have a carer with me when I’m not at work. I like my own space and time” (Thompson 2013). His description of an independent life is less paradoxical than it might seem. A model of independence centered on physical autonomy, distance from others, and the ability to travel at will hinges upon a concept of the modern that is clearly not suitable to all bodies.17 The testimony of those who have made the move out of congregated settings suggests that of primary importance is the right to choose which kind of setting is preferable and to have control over one’s assistance, when needed, and over the shape of the life lived within either a congregated setting or a private domicile— and to make such decisions in light of personal values and ambitions.

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The most dynamic idea of independence in the writing of those who have left group settings and those who hope to do so centers on exactly that notion of choice: choices as to which career or educational path to follow, but also those small but crucial choices of whether to watch television or read, go the park or to the movies, make the bed or leave it be, and even how one’s clothing should be washed. The ordinary matter of clothes washing appears as an important aspect of independence, both as a prized aspect of self-care and as a matter of taste and preference. A woman forced to move to a nursing home when her mother became unable to further help her reports to Jean Tubridy that “I can write all on my own. I can hold a book on my own. I can eat on my own provided I have a table high enough and that won’t move. I can brush my hair on my own. You don’t have a chance to do things here at the nursing home. This is what annoys me. I would wash my own clothes at home but you can’t do that here” (Tubridy 1997, 174). Another woman with a spinal cord injury relates that she is often aided in her apartment by a sister who comes daily to visit: “And the curtains, she takes them down but I’d do the washing of them and I’d let her hand them up. I like to be able to do things myself” (152). Mossie Forde writes that in addition to shopping at the Supervalu, choosing her household furnishings, having lunch at a pub, paying her own bills, and taking the bus, is the pleasure of “doing my own washing and hanging them up” (64). The pleasure here derives from the relative autonomy of doing something with little or no support but also from making the everyday choices that allow the imprint of an inner life onto the material environment. For these women, the activities of the homemaker role are crucial to identity. Even in a benign setting, institutionalization takes away most of one’s capacity to exercise preference, and in less benign settings individuals are dispossessed of all, or nearly all, choices, whether of material belongings, relationships, activities, or even sovereignty over one’s own body. Just as privacy needs to be rethought in relation to disability and those conditions of the body that require the intimate interventions of another, so freedom needs to be understood as something other than spatial distance from others or geographic mobility. Freedom, as narrated in the stories of many who have made the move, is more than crossing that threshold into a particular domain, in this case the private apartment. It is the ability to make the choices by which human beings impact their surroundings: not only the making of a cup of tea for guests “without

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having to look for help” that delights Mossie Forde but “making many cups of tea,” if that is her preference, and then washing up after.

Notes 1. While respecting the decision of many Deaf people to reject the term disabled in favor of referencing themselves as a language minority, I include Deaf memoirs in the belief that disability has as much to do with power relations within a society as with specific physical and language differences. 2. Much of the research on those disabled in the Troubles has concentrated on psychological and social injury, although little or no attention was given to such problems until the 1990s. See analysis and bibliography in Hill and Hansen (2011). To my knowledge, no book-length memoir of physical injury beyond Richard Moore’s has appeared. For a series of interviews focusing on the specific event during which individuals were injured and the situations that have faced them after release from hospital, see the work of Smythe and Fay (2000) and Smythe (2013). 3. The analysis of trauma and its discourse has long drawn upon the foundational work of Holocaust scholars in noting the features of repetition, the speaker’s assumption of a hostile or uncomprehending listener, and a lack of agency sometimes taking the form of disassociation. 4. Specific examples of such policies are given throughout the essays collected in MacLellan and Mauger (2013). 5. This statement reflects a general consensus on the policies of child welfare before and after independence. Maria Luddy points out that as early as 1900, almost 5% of Irish children were institutionalized and that the number grew rather than declined as the century went on. She also notes that the NSPCC had considerable difficulties obtaining entry to the middle-class homes of suspected abusers, whereas inspectors encountered no impediments in entering poor dwellings (Luddy 2009, 84, 85). 6. Maguire (2009) and Rattigan (2012) both investigate the issue of infanticide with somewhat different methodologies and conclusions. Although neither discusses the matter of disabled children as the victims of infanticide, given the stigma of disability and the popular imputation that its causes lay in the sins of the parents, presumably some of those killed or allowed to die were disabled. 7. Irish Sign Language interpreter Cormac Leonard is engaged in historical research toward a history of Deaf institutions in Ireland. See his informative blog on the subject at http://deafirishinstitutions.blogspot.com. 8. See Volume III, sections 13 and 16 of the Report of the Commission to Inquire into Child Abuse. Released in 2009 after ten years in creation, the report (known as the Ryan Report) incorporates the testimony of more

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9. 10.

11. 12.

13.

than one thousand witnesses chosen from among many more who volunteered to speak about their experiences living as children in Irish residential institutions. The Ryan Commission took more limited testimony from those living in designated residential hospitals and residential schools for the Deaf or blind: 58 witness from the category entitled “Special Needs Schools and Residential Services” and 31 from “Hospitals.” The Commission conducted very little investigation into institutions for those with intellectual disabilities, the latter having been the focus of a smaller inquiry known as the McCoy Report, published by the Health Services Executive in 2007. The Ryan Commission categorizes reasons given for volunteering testimony in sections 2.4–2.49 of the report. In interviews given long after the publication of The God Squad, and on his personal Web site and the RTÉ program “Flesh and Blood” (Series 4: Episode 2), Doyle has expressed doubts that he is the biological son of his mother’s husband. However, throughout The God Squad he refers to Patrick Doyle as “my father,” and I have retained that designation in my discussion of the text. He now believes that his neurological disorder was greatly exacerbated by the surgeries to which he was subject as a child, a suspicion he reports as having been confirmed by an American surgeon with whom he consulted while in the United States. Email to the author, 19 July 2017. Paddy Doyle, email to the author, 26 January 2009. The autobiography of journalist Patrick Cockburn includes a description of his experience as a childhood victim of the Cork polio epidemic of 1956. Of his prolonged stay at St. Mary’s at Gurranabraher, a former TB hospital, he recalls that he stopped speaking for several months as a result of the harsh and alienating atmosphere and remembers his terror at overhearing a nurse tell a boy in the bed next to him that if soiled the bed, she would make him eat his excrement. Later, six-year-old Cockburn attempted to hide the evidence of his having involuntary soiled the bed when he was too afraid to get up in the night, a story similar to one told by David Lane and probably not uncommon (Cockburn 2005). In a secular context, Martin Sullivan’s critique of contemporary bladder and bowel management programs in paraplegic rehabilitation argues that the imposition of uniform practices and rigid scheduling produces a similarly disturbing disassociation between self and body: Incontinence…clearly establishes a mind/body dualism unfathomable to the uninitiated. Incontinence reveals one’s body, in all of its excessiveness and unruliness, and anything but productive and docile. The management techniques that must be employed in order to restore this docility and productivity…demand that the

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paraplegic subject adopt a mechanical, disconnected, and disembodied relationship with its body. Once this relationship is established, the body becomes…alien and alienating. (Sullivan 2005, 37) 14. My awareness of the work of Robert C. Post is indebted to Paul John Eakin’s discussion of Post’s writing in the context of autobiographical ethics. See Eakin (1998). 15. Tales from the Institution was published as a continuous narrative on the blogging platform blogspot.com. In an email to the author on 6 November 2018, David Lane explained that he has hoped to publish the blog in book form and, on the advice of someone who appeared to have contacts in publishing, removed it from the web. He expressed pleasure that his narrative is being read and is currently exploring self-publication. 16. As of 2017, the Health Services Executive has indicated that more than 1200 individuals under 65 still live in nursing homes, and the Disability Federation of Ireland reports more than 4500 people on a waiting list for social housing (“More Than 1,200 People under 65 Living in Nursing Homes for the Elderly”). The question of independence (understood as self-determination as well as residence within the wider community whenever possible) has been especially complicated when intellectual disability and mental illness enter the picture. 17. Michael Cronin’s essay “Ireland, Globalisation and the War Against Time” argues that in the new economy, “Stasis is stigma. Those who are grounded by poverty, disability, or prejudice are keenly aware of an isolation that is both social and geographical.” He cites the astute observation of Zygmunt Bauman that “Mobility climbs to the rank of the uppermost among the coveted values—and the freedom to move, perpetually a scarce and unequally distributed commodity, fast becomes the main stratifying factor of our late-modern or postmodern times.” Both Cronin and Bauman are here discussing movement as the result of privilege and choice, not the forced migration of refugees (Cronin 2002, 59, 62).

References Barthes, Roland. 1981. Camera Lucida: Reflections on Photography. New York: Hill and Wang. Bollard, Joe. 1997. Out of Sight. Dublin: Wolfhound. Cleary, Joe. 2007. Outrageous Fortune: Capital and Culture in Modern Ireland. Dublin: Field Day. Cockburn, Patrick. 2005. The Broken Boy. London: Jonathan Cape. Coe, Richard N. 1984. When the Grass Was Taller: Autobiography and the Experience of Childhood. New Haven: Yale University Press.

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Commission to Inquire into Child Abuse. 2009. Final Report. http://www. childabusecommission.ie/rpt. Convention on the Rights of Persons with Disabilities. A/RES/61/611. Article 19. https://www.un.org/development/desa/disabilities/convention-on-therights-of-persons-with-disabilities.html. Cronin, Michael. 2002. “Speed Limits: Ireland, Globalisation, and the War Against Time.” In Reinventing Ireland: Culture, Society, and the Global Economy, edited by Pedar Kirby, Luke Gibbons, and Michael Cronin, 54–67. London: Pluto. Drinkwater, Chris. 2005. “Supported Living and the Production of Individuals.” In Foucault and the Government of Disability, edited by Shelley Tremain, 229–44. Ann Arbor: University of Michigan Press. Doyle, Paddy. 1989. The God Squad. 1988. London: Corgi. Dunne, Joseph. 2002. “Citizenship and Education: A Crisis of the Republic?” In Reinventing Ireland: Culture, Society, and the Global Economy, edited by Pedar Kirby, Luke Gibbons, and Michael Cronin, 69–88. London: Pluto. Eakin, Paul John. 1998. “The Unseemly Profession: Privacy, Inviolate Personality, and the Ethics of Life Writing.” In Renegotiating Ethics in Literature, Philosophy, and Theory, edited by Jane Adamson, Richard Freadman, and David Parker, 161–80. Cambridge: Cambridge University Press. Evans, Eibhlin. 2002. “Letters After the Fact: Responses to Nuala O’Faolain’s Are You Somebody?” Critical Survey 14 (3): 51–63. Fegan, Catherine. 2009. “‘I Told a Lie and the Nun Beat Me Repeatedly with Scissors’: Child Abuse Victim.” Daily Mail.com, May 20. https://www.dailymail.co.uk/news/article-1185094/I-told-lie-nun-beatrepeatedly-scissors-Child-abuse-victim-reveals-horror-past.html. Forde, Mossie. 2010. Mossie’s Story. Dublin: The Author’s Friend. Frank, Arthur. 1995. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press. Garland-Thomson, Rosemarie. 1997. Extraordinary Bodies: Figuring Disability in American Culture and Literature. New York: Columbia University Press. Hill, Myrtle, and Nancy Hansen. 2011. “Disability and Conflict: Untold Stories from the North of Ireland.” In Critical Issues in Peace and Conflict Studies, edited by Thomas Matyók, Jessica Senehi, and Sean Byrne, 97–114. Lanham, MD: Lexington Books. Kristeva, Julia. 1982. Powers of Horror: An Essay on Abjection. Translated by Leon S. Roudiez. New York: Columbia University Press. Lane, David. 2011. Tales from the Institution: The David Lane Story. http:// Disableddave.blogspot.com. Leonard, Cormac. Deaf People and Irish Institutions, 1815–1947. http:// deafirishinstitutions.blogspot.com.

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Luddy, Maria. 2009. “The Early Years of the NSPCC in Ireland.” Eire-Ireland 44 (1–2): 62–90. MacLellan, Anne, and Alice Mauger. 2013. Growing Pains: Childhood Illness in Ireland, 1750–1950. Dublin: Irish Academic Press. Maguire, Moira J. 2009. Precarious Childhood in Post-independence Ireland. Manchester: University of Manchester Press. Marsden, Joanna. 2010. Extraordinary Lives: Celebrating 50 Years of the Irish Wheelchair Association. Dublin: Dyflin. McDonnell, Joan. 2004. A Spring in My Step. Cork: Collins. McDonnell, Patrick. 2007. Disability and Society: Ideological and Historical Dimensions. Dublin: Blackhall. Moore, Richard. 2010. Can I Give Him My Eyes: A Memoir. Dublin: Hachette. “More Than 1,200 People Under 65 Living in Nursing Homes for the Elderly.” 2017. RTE News, August 8. https://www.rte.ie/news/2017/0808/895907disabilities-nursing-homes. O’Connell, Noel. 2017. Belonging: An Autoethnography of a Life in Sign Language. Oxford and Bern: Peter Lang. O’Leary, Josephine. 2002. “My Challenging Years.” In Deaf, Woman, Proud, 18–24. Dublin: Irish Deaf Women’s Group. Post, Robert C. 1991. “Rereading Warren and Brandeis: Privacy, Property, and Appropriation.” Case Western Reserve Law Review 41 (3): 647–81. Rafferty, Mary, and Eoin O’Sullivan. 1999. Suffer the Little Children: The Inside Story of Ireland’s Industrial Schools. Dublin: New Island. Rattigan, Clíona. 2012. “What Else Could I Do?” Single Mothers and Infanticide, Ireland 1900–1950. Dublin: Irish Academic Press. Shakespeare, Tom. 2013. Disability Rights and Wrongs Revisited. London and New York: Routledge. Smith, Sidonie, and Julia Watson. 2012. “Witness or False Witness? Metrics of Authenticity, Collective I-Formations, and the Ethic of Verification in FirstPerson Testimony.” Biography 35 (4): 590–626. Smythe, Marie. 2013. Injured. Vimeo.com/60263045. Smythe, Marie, and Marie-Therese Fay. 2000. Personal Accounts of Northern Ireland’s Troubles: Public Chaos, Private Loss. London: Pluto. Snyder, Sharon L., and David T. Mitchell. 2006. Cultural Locations of Disability. Chicago: University of Chicago Press. Sullivan, Martin. 2005. “Subjected Bodies: Paraplegia, Rehabilitation, and the Politics of Movement.” In Foucault and the Government of Disability, edited by Shelley Tremain, 27–44. Ann Arbor: University of Michigan Press. Thompson, Sylvia. 2013. “Fifty Years of Creating Independence in Ireland.” Irish Times, October 29. https://www.irishtimes.com/life-and-style/healthfamily/fifty-years-of-creating-independence-in-ireland-1.1575830.

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Tubridy, Jean. 1997. Pegged Down: The Experience of People in Ireland with Significant Disabilities. Dublin: Institute of Public Administration. Van Alphen, Ernst. 1997. Caught by History: Holocaust Effects in Contemporary Art, Literature, and Theory. Stanford: Stanford University Press. Woolf, Virginia. 1985. “A Sketch of the Past.” In Moments of Being, edited by Jeanne Schulkind, 61–160. New York: Harcourt.

CHAPTER 4

Literary Disability: Autobiography and Novel at Mid-Century

Christy Brown, Christopher Nolan, and Stewart Parker are, with Sean O’Casey, the only Irish autobiographers with significant disabilities who have been predominantly known as writers of literature. Primarily because of the 1989 film adaption, Christy Brown may be most familiar today for his early memoir, My Left Foot (1954), but his subsequent prose work, Down All the Days (1970), received widespread and copious praise for its technical virtuosity and portrait of Dublin working-class life. Christopher Nolan first won notice as a poet, and reviews of Under the Eye of the Clock (1987) gave as much attention to its unusual prose style as to the “unicorn stick” (a predecessor of the mouth stick) by which it was laboriously typed. Stewart Parker was one of Northern Ireland’s major playwrights and the subject of an award-winning biography before the posthumous publication of Hopdance in 2017. With the exception of Brown’s My Left Foot, each of the writings I will discuss speaks from the third person and was conceived as a novel; the protagonist of Down All the Days is unnamed, and Nolan and Parker assign names to their protagonists that differ from their own. All three writers present distinct but equally tantalizing problems of genre. Many have debated the distinctions between nonfiction and fiction, as well as the areas of overlap. Others have argued for the creation of a middle genre, variously known as autofiction (which may retain the pronominal continuity of author and protagonist but is otherwise openly

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fictional), self-narrative (much like autofiction but emphasizing its referentiality despite any invented content), fictional autobiography (novels that mimic autobiographies), and autobiographical fiction (novels with multiple parallels between the facts of an author’s life and that of the protagonist and/or narrator).1 As explained in the introductory chapter, this study takes for granted the adoption of novelistic practices in the writing of autobiography and autobiographical practices in the writing of novels. Still, as Thomas Couser has argued, “genre matters.” “What is important,” he asserts, “is not classifying but clarifying life writing, exploring what genres are in order to understand [what] they do” (Couser 2005, 139). In reading works that are difficult to place generically, we can ask that very question of how genre choices create or diminish possibilities for writers and how they affect reading practices. What is gained and lost by the adoption of the third-person voice, an omniscient perspective, and a freer hand with dialogue and the invention of scenes and characters? We especially need to explore what is gained and lost by writing about oneself in the third person, particularly when the body of the protagonist, like that of the author, is disabled. How is fictional autobiography rhetorically different from autobiographical fiction, and what does that have to do with the matter of disability?

Rereading My Left Foot in the Era of Disability Rights Any mention of disability and literature in Ireland will usually bring forth references to Christy Brown and, in particular, to his first work, the memoir My Left Foot, as well as the highly acclaimed 1989 film of the same name. Brown was a celebrity during the years that followed its publication, with his books garnering reviews in major newspapers and his distinctive appearance a familiar feature of television programming in Ireland, England, and the United States. Today, My Left Foot may feel stiff, dated, and worse, terribly compromised by the circumstances of its composition and publication. But precisely because Brown has been the face of disability in Ireland for so many readers, it is important to reconsider in the era of disability rights both his best-known work and Down All the Days, the most mature and fully realized of the prose works he subsequently published. My Left Foot appeared first in 1954 when Brown was in his early twenties. The narrative recounts his youth in the newly built social housing

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estate of Kimmage as, in his own words, “the son of a bricklayer and the twelfth in a line of twenty-two, of which thirteen survived” (quoted in Hambleton 2007, 15). Little was known of cerebral palsy in Ireland at the time and it can be hard to diagnose even today, but Bridget Brown was given neither instructions nor an accurate explanation after she observed in her son’s earliest infancy the symptoms of what was later diagnosed as severe athetoid cerebral palsy. Even when an infant’s physical differences were recognizable and understood, women, and especially working-class women, were often sent home after delivery without any information or help, as in the story of David Lane discussed in the preceding chapter. Lane’s mother unwrapped her tightly swaddled son upon arriving home from hospital, only to discover the large bulge of exposed spinal cord in a transparent sac of spinal fluid protruding from his lower back: She had been told nothing about spina bifida, although the symptoms were obvious and the condition not unfamiliar. The limited knowledge of cerebral palsy is only part of a story that plays out in terms of class and gender, as well as physiology.2 Repeatedly informed by the medical professionals of whom she asked advice that Christy was a “mental defective,” his mother instinctively felt that he was not, despite his lack of spoken language and inability to control his movements. Told that he should be institutionalized, both parents rejected such a dire assessment, as many parents of their class did, the institutionalization of one’s children being an even greater mark of shame than their presence in the house. Despite her nearly annual pregnancies and limited resources, Bridget Brown devoted her spare time reading to Christy and attempting to engage his mind. The moment when, as he writes, “everything was changed, my future life moulded into a definite shape,” occurs on a December afternoon when, at the age of five, he impulsively grasped a piece of chalk with his left foot and attempted to write on his sister’s school slate (Brown 1998, 14). While his family looked on in amazement, with his mother’s encouragement he scrawled the letter “A,” thereby affirming her faith in his intelligence and potential. With the acquisition of literacy, Brown discovered the means to communicate with his family and eventually, the wider world. The memoir charts his developments in reading, painting, and writing; his struggles with loneliness and depression; his efforts to gain more physical independence and improve the clarity of his speech; and his first feelings of romantic attraction. The narrative emphasizes the influence of several benefactor figures in addition to his mother. Most important among them are

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Katriona Delahunt Maguire, the young social worker who encountered Bridget Brown at the Rotunda Hospital where she was recovering from another difficult and dangerous pregnancy and who became a friend and correspondent of Christy Brown for the rest of his life, and Robert Collis, a pioneer in the treatment of cerebral palsy in Ireland who guided him through the process of revising the drafts of what became My Left Foot. As the narrative concludes, Dr. Collis asks Brown to be present on the stage of a fund-raising event for his new clinic while, he, Collis would read aloud Chapter 1 of the memoir. The publicity resulting from this event, attended by more than five hundred people at the Gresham hotel, led to offers of publication in the United States and England, as well as serialization in Good Housekeeping (a magazine aimed at middle-class American homemakers) and John Bull (an English general interest magazine, akin to American periodicals like The Saturday Evening Post ). Those very placements suggest that the book was understood as a paean to social normality: the unmanageable body of its author rendered capable of sufficient conformity to become also capable of performing labor, thus affording him a place within a world based on commerce and class. This middleclass respectability for such readers was nevertheless intriguing because of his bohemian vocation as a writer and an exotic background sufficiently domesticated, at least textually, to be unthreatening. A few months after publication, the BBC produced and aired a radio play based on the text, and Brown gave many interviews for magazine, radio, and television, with his siblings providing assistance, as his speech was difficult to comprehend for those unaccustomed to it. My Left Foot has never been out of print, appears frequently on secondary school reading lists, and has been issued by at least seven publishers in England and the United States and translated into eleven languages, with audio and Braille versions also available. The film adaptation is available for streaming on most online video providers more than thirty years after its release. Yet despite its abiding popularity, academic discussions are few, except in relation to the film. The laudatory first reviews spoke less of the book than of the details of Brown’s physical impairment, his mother’s constant pregnancies, and most of all, the phenomenon of the articulate foot.3 The cover of the first edition uses approximately half its space to reproduce a photograph of his foot in close-up holding a paintbrush; the photograph is cut off at the ankle and shows nothing of his environment, family, face, or the rest of his body. The back cover is similar. When the film adaptation was shown in special congressional viewings as part of efforts to

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pass the Americans with Disabilities Act, members of the invited audience were gifted with chocolate left feet manufactured as souvenirs, as were attenders at other specialized showings (Ein Sof Communications 2018). Similarly, almost all publicity photographs of Christy Brown highlight the act of writing, painting, or typing with his foot, while photographs of him talking or sitting with others are generally candid snapshots. This fetishization of his left foot came about early, even before the publication of the memoir. Brown despised giving demonstrations of his painting technique for the small salary earned from the Disabled Artists Association and felt he had become “the cripple who painted with his toes” or a “performing monkey or seal” (Brown 1998, 83). Ten years after My Left Foot, he complained again that his “travelling showman act” rendered him a “performing barrel-organ monkey” (quoted in Hambleton 2007, 120). Although large sales provided the family with muchneeded income, as Brown’s literary ambitions grew, he also came to view his memoir as juvenilia from which he needed to distance himself. Only reluctantly did he agree to its multiple reprintings and expressed his desire that the title reference to his left foot be omitted and the book reprinted as simply The Story of Christy Brown, as it was in the American edition of 1971. For all its merits as an autobiographical narrative, My Left Foot has been perpetually treated as the miracle book of a miracle boy, and the 1955 French translation was indeed entitled Miracle en Ireland. Perhaps in part because of the marketing and reception of the book as a kind of novelty item, scholarly treatment has been practically nil, although two lightly documented biographies aimed at general audiences appeared in 1998 and 2007, and Claire Lynch has offered an insightful, if brief, analysis of the text in her historical study of Irish autobiography (Lynch 2009). As the sole academic article devoted to My Left Foot, Tom Coogan’s examination of the text in conjunction with another memoir, I Raise My Eyes to Say Yes, explores both books through the perspective of first-wave social model disability theory, particularly in terms of the social construction of disability, disability pride, and the value of establishing collective voice (Coogan 2007). Coogan raises some of the concerns that may trouble contemporary readers of Brown’s autobiography: its reliance on nondisabled emancipatory figures, its dramatic story of an exceptional and singular achievement, and the positioning of the body as a prison that must be overcome by the mind. Coogan’s greatest concern, however, is that it obscures the specific nature and degree of Robert Collis’s involvement, leading Coogan to identify it as an assisted, or even facilitated, text

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like I Raise My Eyes to Say Yes or, more famously, The Diving Bell and the Butterfly, both of which are attributed to individuals with locked-in syndrome who communicated through a system of eyeblinks. Although the question of how we read an assisted or facilitated text is an important one, Brown’s letters, as reproduced in the biographies and recently made available at the National Library of Ireland, confirm that his writing during the period is entirely consistent with the style of My Left Foot. His voice in the letters is uniformly formal and the content introspective, decorous, and earnest. Collis’s notes on the manuscript, preserved in the National Library of Ireland, are sparse: “Theme—not clear what author is trying to say” and “too many words, too many descriptions” (Brown Papers, 739/11/1). This is not line-editing or wholesale reorganization, and the book appears to be no more an assisted text than is any scholarly article or creative work abetted by the input of colleagues and editors. If we may put aside, then, the question of its integrity as the product of a single author, I would suggest that as a disability memoir, the ongoing popularity of the book with a general audience may be due in part to the very traits that Tom Coogan identifies (and regrets) as belonging to a more traditional view: its exceptionalism, the nondisabled salvationary figures, and its insistence on the triumph of mind over body. My Left Foot, its reception, and the subsequent film appear to reflect a disability narrative more common to an earlier era. However, My Left Foot is also text that deserves to be read against its conventional tropes rather than as if they constituted its totality. First of all, reading the text as the singular story of an extraordinary human being ignores its intervention as an exposé of the failings of a state that provided completely inadequate health care and no provision for appropriate education. At several points in the memoir, Brown notes his mother’s fear for his future given that he could not go to school, and the efforts of Dr. Collis to procure a private tutor emanate from the decisive statement that “You couldn’t attend a school or university in the ordinary way” (Brown 1998, 170). Brown also thematizes a sense of solidarity with other “cripples.” Looking at the children around him going through their exercises at Collis’ therapy center, he recalls, “I remembered how bitterly a look of pity had hurt me once….I began to feel a sympathy, an affinity with those children, a link that enabled me to see and to feel the real personalities” (130–31). The experience drives him to write for “all who had a life similar to my own, a life bounded in on all sides by the high walls of a narrow, suppressed life” (139). He knew few other adults

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with similar disabilities, nor was there during his era a venue for meeting them. According to his sister Ann, he later in life avoided such contacts (Hambleton 2007, 121–22). Thus, his sense of a shared identity is by no means developed, and yet it matters enough to him that he repeats the idea throughout the book. He also highlights the ongoing incidents and effects of social exclusion, while documenting that he could and did interact with others and participate in the communal life of a child and only withdrew from that interaction after the means to interact—his “chariot” as they called the wheeled wagon in which his brothers pulled him everywhere they went— breaks and sits unrepaired long enough for him to feel his difference. In adolescence, he remains uninvited to those “things that made up the every-day lives of other fellows: football, dances, beer parties and girls” (Brown 1998, 86). However, a reader, having witnessed his engagement with neighborhood life earlier in the book and cognizant that there is no physical reason he should not attend football games and other gatherings, understands that social exclusions are not inevitable nor intrinsic to disabilities. As Paul Longmore declares in “The Glorious Rage of Christy Brown,” “We witness Christy Brown, boy and man, fighting to overcome bias, to get control of his life, to define himself….My Left Foot is emphatically not a ‘triumph-over-adversity’ tale. It is the story of a disabled man’s lifelong struggle against prejudice…..Christy Brown reflects our demands for dignity, self-determination, and equal access to society and life” (Longmore 1990, 23, 24). Although Longmore is referring to the film adaptation, the social origins of Brown’s depression during this period come through in the text, especially in the chapter devoted to his first adolescent crush. A pretty neighborhood girl pays him attentions that allow him to imagine she feels genuine attraction until he catches her gazing at him with a look of pity. “Bitterest of all,” he reflects, “was the realization, that I had tricked myself into believing that my affliction didn’t matter, that my ‘queerness’ was merely self-consciousness which nobody else took any notice of…I had almost forgotten myself, had come to believe that there was no ‘difference’ between myself and other people, except in my own mind” (Brown 1998, 74). Brown here emphatically undercuts sentimental notions of overcoming one’s physical impairment by positive thinking. Social forces sequester him socially, redefine his inward sense of self, and impose its subsequent isolation.

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Secondly, the powerful presence of Bridget Brown, Robert Collis, Katriona Maguire, and many other therapists and tutors leaves the impression that My Left Foot could be read as a tribute to a series of nondisabled salvationary figures. Unquestionably, Bridget Brown saved her brilliant and precocious son from a death-in-life within a residential institution, and she did so at great personal cost. Readers were quick to acknowledge her strength, even if the state and church did little or nothing to help women like her to control their reproduction, contest domestic violence, or receive the better housing and health care that they needed. An early review bore the title, “Mrs. Brown Said ‘No’ and Saved a Crippled Genius,” while a 1962 article in the Irish weekly, The Sunday Press, was entitled “The Triumph of Mother Courage,” and a 1999 review of Anthony Jordan’s biography of Brown in The Irish Times repeats the epithet.4 Brown’s letters reveal that he was cognizant of his debt throughout his life, and one of the most moving sequences of My Left Foot tells of learning to write a new word from his spot in a corner of the sofa while watching his mother nurse a new baby. Frustrated with the difficulty of its letters but refusing her offer of help, with great urgency and concentration Christy succeeds finally in writing the all-important word: “M-O-T-H-E-R.” My Left Foot could be read as a sequence of maternal interventions and miraculous visitations from social workers, speech and physical therapists, academic tutors, and mentors. But should it be? Unlike many popular disability narratives, the narrative perspective is exclusively his; it is decidedly not a tale of the inner transformation of a nondisabled protagonist who is chastened, inspired, or otherwise bettered by his or her association with a disabled individual. Brown’s descriptions of his education also rebuff the paternalism of the rescue narrative: Katriona Maguire buys him paints but after he has already bartered with one of his brothers for his first set. She brings him books, but he requests them. Collis admonishes him to read modern fiction to help him out of the quagmire of the Dickensian style in which he finds himself as writer, but the style dissatisfies him as much as Collis. After teaching himself to paint, it is he who decides to try writing. His mentors would not have suggested imitating pulp Westerns, but having grown up on cowboy films, he begins with stories of “the American Wild West” populated by “tobacco-chewing, gun-slinging men who rode all day and drank all night” (Brown 1998, 85). And while his story of education reflects a well-established bildungsroman tradition, he places his desire for knowledge next to his and his mother’s anxiety

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about his ability to support himself after her death. In an early letter to Katriona Maguire, Brown speaks of his hope for publication as a path to financial autonomy: “I am really serious about this,” he asserts. “After all, a man cannot live forever with his mother. Neither for that matter can he subsist on the extraordinary generosity of his friends” (Brown Papers, 739/8/4). Something practical and survivalist about his efforts counterbalances a more romantic quest for self-expression or a set of class-based values that privilege writing as the apotheosis of development. A contemporary reader in the era of disability rights might also wish for a persona who is either angrier or more self-accepting. My Left Foot stylistically, structurally, and psychologically concerns itself with what is “proper,” and the recurrence of such phrasings as sit properly, move properly, speak properly, breathe properly, write properly represents the inculcation of dominant notions of normality. In contrast, we have twelve instances of queer and a remarkable nineteen instances of twisted as adjectives applied to himself or others with cerebral palsy. Much of the first two-thirds of the book also charts his efforts to regularize his movements and speech, whether by a pilgrimage to Lourdes or long hours in demanding physical exercises and vocal therapy. Yet one cannot anachronistically judge him for the lack of a disability rights community to provide a better mirror in which to see himself than the one he shatters in an outburst of self-loathing. In the early 1950s, Brown had essentially two models for self-representation: the inspirational Tiny Tim figure or the ubiquitous “bitter cripple” of gothic fiction and cinematic melodrama. He chose neither and instead creates a very particularized persona much like that of the hundreds of earnest, thoughtful, self-interrogating, and occasionally very funny letters he wrote to those he trusted and cared for. And despite the constraints of this book, which had a second function as a fund-raising device for Collis’s clinic, the persona he develops gives some glimpse into the acerbic and often caustic wit he displayed later in letters and interviews, when, for instance, he reveals that his first attempt at autobiography was a rambling four hundred page manuscript entitled “The Reminiscences of a Mental Defective”: “a nice piece of irony,” he quips, “a sort of punch on the nose for the doctors who had doubted my sanity at the age of five” (143). Throughout My Left Foot, Brown does repeatedly refer to himself as “imprisoned” within his body, and a passage describing himself before the acquisition of literacy delineates the difference between his interior

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life and a body that he cannot control and that others do not know how to interpret: I could not speak or even mumble, nor could I sit up without support on my own, let alone take steps. But I wasn’t inert or motionless. I seemed indeed to be convulsed with movement, wild, stiff, snake-like movement that never left me, except in sleep. My fingers twisted and twitched continually, my arms twined backwards and would often shoot out suddenly this way and that, and my head lolled and sagged sideways. I was a queer, crooked little fellow. (12)

The passage shifts from a description of his lack to that of his embodied excess and concludes as if observing himself from afar with the uncomprehending eyes of an outsider. He is much more than a silent watcher of life, however. In this passage, he articulates his own silence, describes his movements as they felt to him, and then imagines how he must appear to another watcher who, whether helpful or hostile, assumes the power of the subject position. The social nature of his bodily confinement during his early years becomes clearer when contrasted with his experiences in America during the summer of 1960. Staying on Long Island with Beth Moore, the married woman with whom he maintained a prolonged love affair, he discovered a greater capacity for independence and freedom than he had known in Dublin. Some of “this tremendous boost to my morale,” as he explained to Katriona Maguire, resulted from such liberating factors as drinking straws, Velcro fastenings, the American habit of wearing more casual and less confining clothing, a larger and more commodious bathroom, and later, in 1970, a lightweight electric wheelchair (quoted in Hambleton, 103). He discussed the equally liberating experience of his love affair in a letter to Maguire written shortly after returning home: Never before had I been aware of such wholeness and completeness in myself. With her, nothing was impossible, no task to great, no idea too remote…one woman had shown me it is possible—possible to build a life outside my family, to love and be loved, not through the focus lens of imaginary experience, but in the forge of life and reality, through the direct and living agency of body and soul. (Quoted in Hambleton, 106)

With different material conditions and the possibility of a mature relationship, body and soul seem less hopelessly estranged, again emphasizing, if

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retrospectively, the attitudinal conventions and the restrictions of the built environment that exacerbate the sense of physical limitation in his memoir. As Claire Lynch argues, Brown’s My Left Foot resembles other midcentury Irish autobiographies by Frank O’Connor, Sean O’Faolain, and Brendan Behan in its overriding sense of claustrophobia, isolation, and limited opportunity within a nation beleaguered by economic stagnation and the strict reign of the Catholic Church over private and public life. She wisely refrains from seeing what Brown’s calls his “imprisonment” within his body as a metaphor for national paralysis and even suggests that his focus on the domestic sphere and the overcrowded house rather than on the nation more broadly renders it an unusual and not particularly “Irish” manifestation of the genre (Lynch 2009, 124). Yet the nature of the household in terms of both its architecture and its family dynamic is specifically that of the Irish urban working class, and in that sense, his “prison” must extend to the social world in which he found himself and was trapped for reasons both loving and debilitating.

Down All the Days: Writing the Inner World Written after the deaths of Patrick and Bridget Brown, Down All the Days exposes the familial trauma that he acknowledged in private correspondence but would never have acknowledged publicly while they lived. He candidly portrays what My Left Foot insinuates of the ongoing turmoil of family life and the consequent degradation of the body: the mercurial father who seeks release in alcohol, violence, and sex; the siblings lost to early marriage and excessive drinking; the mother worn down by twenty-two pregnancies for which she is berated and beaten by a husband who blames her fertility for the family’s poverty, excusing himself of any responsibility on the grounds that “I was drunk every time. Dead bloody drunk every time” (Brown 1990, 180). Brown was well aware that this “novel” would be understood as autobiography and remarks in a letter to the novelist Margaret Forster that those congratulating him on the advance notices will upon reading it “probably call me Judas Iscariot and a lot less biblical names for painting such a lurid picture of their little cosmos, conveniently forgetting that it is my world and I am in it

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too….At the very least I’ll bet there’ll be a lot of red faces and forgettable silences upon the emergence of my little opus” (quoted in Hambleton 2007, 167). Although those within the family circle and the immediate neighborhood would have recognized the models from which Brown drew his portraits, publishing the book as a novel allowed at least some degree of privacy for those depicted within in it. The two siblings with whom he was most intimate are either textually absent or unidentifiable: Ann, who cared for him after their mother’s death and with whom he later shared a custom-built duplex, and Sean, who was his confidant, translator, and traveling companion. Still, he feared what relatives and family friends would say, as each personage in the book correlates with an actual family member or neighbor, and the events, even if condensed or partially fictive, parallel what he saw and heard around him while growing up in Kimmage. In her book on trauma and testimony, Leigh Gilmore attests that not only does the novelistic form provide a buffer between the story told and the world with which it converges but it also offers formal possibilities that are simply more appropriate for certain kinds of life stories: conventions about truth telling, salutary as they are, can be inimical to the ways in which some writers bring trauma stories into language. The portals are too narrow and the demands too restrictive. Moreover, the judgments they invite may be too similar to forms in which trauma was experienced. When the contest is over who can tell the truth, the risk of being accused of lying (or malingering, or inflating, or whining) threatens the writer into continued silence. In this scenario, the autobiographical project may swerve from the form of autobiography even as it embraces the project of self-representation. (Gilmore 2001, 3)

If Brown’s sisters Ann and Mona were privately disturbed by the content of Down All the Days, they yet spoke of the book with praise as a record of Dublin life during the period and, in Mona’s words, “more like an autobiography than My Left Foot. It contained things that really happened” (quoted in Jordan 1998, 104). Questions of facticity aside, Down All the Days offers the reader a convincing sense of what it was to be the nameless young boy whose condition and context replicates that of his author, and it does so by avoiding plot, or even a tight chronological ordering of events. Although, as Michael Pierse points out, the arc of the boy’s development parallels the

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arc of his father’s decline and the book’s last phrase depicts “his own face, thin as a hawk’s and the eyes already voyaging, rising to meet the world,” that meeting is still a potential, rather than realized, futurity. The underlying structure that Pierse identifies is available only to readers who know enough about the author to see the boy as his stand-in.5 Down All the Days is not a bildungsroman in the manner of My Left Foot, which concludes with the triumph of its own production and publication. Nor is it a story of origins, as Sean O’Casey intimates of his own autobiography by its subtitle, “Swift Glances into the Things That Made Me.” Nor does it record a liberation from abuse or institutionalization, as do The God Squad and similar narratives. If Down All the Days is plotless, that may be because it is less a story of development or deliverance than a representation of being. Drawing stylistically upon modernist texts like Portrait of the Artist as a Young Man as an influence, Brown could enjoy a greater elasticity of form and style in attempting that difficult inward turn.6 A third motive for writing the book as a novel rather than as nonfiction, beyond questions of privacy and the possibilities of form, may lie in the relative lack of literary status granted autobiography during the period. Throughout the early 1960s, Brown had been attempting to publish poetry and was at work on a play; the literary journals to which he made inquiries were highly selective and contemporary, even experimental, in their editorial choices. He saw himself as having the talent to join other younger Irish writers in filling the gap left by the deaths of Brendan Behan and Patrick Kavanagh. The most respected of mid-century Irish autobiographies were all the products of those who had already made sterling reputations as novelists, poets, and playwrights. For a writer who in 1960 declared himself “no longer the author of My Left Foot ” and wrote to his brother Sean that he felt desperate to escape “the shadow of my first book” (quoted in Hambleton 2007, 116, 147), producing another memoir would have been a defeat. A final hypothesis as to why Brown chose the form of a novel for Down All the Days concerns its prose style, which differs greatly from that of My Left Foot and the majority of his correspondence. Robert Collis had taught Brown to simplify a style that he himself found “pompous and unnecessarily dramatic” (Brown 1998, 168). The elimination of archaic diction, elaborate circumlocutions, and vague abstractions resulted in the clean, plain style of the memoir. However, as an avid reader of Joyce, Auden, and other practitioners of high modernism, Brown in the years following sought to achieve a style that was literary and even ornate

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without being amateurish. Tom Coogan notes that Down All the Days presents an intensified and confident display of the very qualities he had been taught to excise by Dr. Collis and proposes that “the re-emergence of this style for the telling of the story reveals two things. Firstly, it is not inadequate per se, but simply unsuitable for the purposes of My Left Foot. Secondly, in being the distinguishing feature of what is in effect a supplement to My Left Foot, it suggests that style is integral to the lack the novel’s very existence implies” (Coogan 2007, 45). Style becomes a key to reading this text, in that it is style that allows Brown to explore the working-class culture that was both his nurture and his adversary; the phenomenology of the body, including its sexual impulse; and near the conclusion—with an extraordinary act of empathy—to speak of shame, pride, love, regret, and lost hopes from within the imagined consciousness of the man he most loathed, his father Patrick Brown. The straightforward chronicle of events and the plain style of My Left Foot are not only unsuitable, as Coogan argues, but entirely inadequate for a book like Down All the Days. Through its extensive interior monologues and narration of physical sensations, as well as the unannounced shifts into fantasy and dreams, Christy Brown creates a language of the body and, in so doing, depicts the material world of working-class Dublin and its consciousness, both inarticulate and supremely verbal. On the one hand, the auto-ethnographic approach of the text underscores the formative effect of a nationalist and religious legacy of martyrdom, a church and state profoundly repressive of sexuality and of women, and the limited opportunities of a stagnant economy. As Michael Pierse explains, it is also a catalog of the folkways and speech of working-class Dublin at a particular historical moment (Pierse 2011). On the other hand, the book, at least in those sections that concern the family, proceeds for the most part from the inside out. This intent focus on the sensations, dreams, thoughts, and observations of the unnamed boy has led more than one reader to see Down All the Days as a depiction of utter isolation: Francoise Borel calls the protagonist “nothing but a keen glance, ‘watching avidly’ the fantastic world around him and inside him” (Borel 1976, 287), and R. Brandon Kershner’s otherwise helpful reading of the book in light of Portrait of the Artist as a Young Man is marred by an ableist orientation that sees the physical condition of Brown’s protagonist as the epitome of a alienation of self from community that he traces back to Stephen Dedalus (Kershner 1996). But the protagonist is nevertheless an integral part of the life around him, although he does not himself venture into

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the pubs or have sexual relationships with women and it appears that he alone among his family may be immune from his father’s ever-whirling leather belt and hard fists. The attitudes, habits of being, and, above all, the language of Dublin Catholic working-class culture are his own, as they were his author’s.7 As an individual, he is nevertheless inseparable from the stories about the neighbor woman who nearly poisoned her husband with stolen tulip bulbs she mistook for onions; or the decrepit AngloIrish town house from which the family had moved to their corporation house, haunted by the ghosts of those its aristocratic owner had condemned to death; or Ireland’s legacy of rebellion, the latter also a source of his father’s bitter tirades against the present. There are songs, again of nationalist sufferings but also tunes from the music hall and minstrel shows, and songs of lost love and ribald conquest. And there are ritualistic exchanges about sexual prowess and desire as well as the rituals of the church. This melding of the details of Dublin working-class life and the inarticulate inner life of its characters requires a style that can move easily within and without. Because Down All the Days is free of expository passages and so much is told through dialogue and interior monologue, Brown never directly mentions the relationship between class and physical impairments addressed in so many memoirs by Irish writers with disabilities. Contemporary clinical studies have established that factors associated with poverty such as low birth weight and lack of prenatal care contribute to a much higher incidence of cerebral palsy among children born to low-income mothers. At mid-century, however, cerebral palsy was not understood to be connected to poverty and overcrowding in the way that trachoma, tuberculous, smallpox, and other diseases were. Robert Collis wrote with some relief that “Fortunately…cerebral palsy is not chiefly confined to the poor and the destitute who tend to be inarticulate” so that raising funds for its treatment could more easily be achieved than for “certain other crippling conditions like rickets” (Collis and O’Donnell 1951, 396). Accordingly, Down All the Days focuses its attention on the power of class and culture to affect the way the body is apprehended and understood rather than its causal effects on the body’s impairments. Yet the body is central to the book, and each body—including those of his siblings, parents, and neighbors—remains subject to trauma. If the acquisition of language dominates the plot of My Left Foot, Down All the Days is awash in the fluids of blood, breast milk, vomit, urine, semen. It speaks eloquently of the body’s domineering rule, although subjugated

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itself to a theology and culture of self-loathing. In its insistence upon the lived experience of the material body and its rejection of the progressive structure of the quest narrative, Down All the Days lays claim to its own distinct literary territory and successfully resists the imposition of logocentric ideologies of redemption and what Thomas Couser calls “the tyranny of the comic plot, the convention of an affirmative ending” (Couser 1997, 75). At the same time, Christy Brown treats the disparaged body with great tenderness. Were Down All the Days a first-person memoir, it is unlikely that he could have written about masturbation, involuntary erections, disturbing erotic dreams, or the bodies of his sisters without a tone of self-derision and mockery, if at all. The boy who is the controlling consciousness (although not the narrator) struggles with a culture that stigmatizes sexual desire, and his unresolved sexual self-hatred seems more profound than his frustration with the difficulties of talking or controlling his movements. In one scene near the conclusion, the boy awakens from a long nightmare filled with surrealistically shape-changing erotic images, overheard snatches of obscene conversation, religious confusion, medical torment, and his father’s rat-devoured corpse. He thrashes “wildly about, until the world rocked and rang and terror broke down on him.” When one of his brothers wakes to ask what the commotion is about, another “with fierce disgust, settling down under the bedclothes again,” answers, “Nothing…the bugger was just having a wet dream” (90, 223). His brother’s derisive reductionism counterpoints the solemnity with which the boy’s shame and bewilderment is rendered but does so in a way that is self-immolating: Because of the brother’s “harsh disgust,” we sympathize even more with the boy whose dream we have also experienced as readers. Brown introduces such scenes of deep interiority with a patience and slowness that draws the reader into the boy’s mind and body. One of the book’s most affecting and beautiful sequences involves a memory of lying awake restless and twitching with involuntary movements in the single room where all his siblings slept. As his eldest sister comes into undress in the moonlight late one night, he finds himself amazed and moved by the sight of her shoulders and breasts, then mortified by his erection and furious at her for having inadvertently provoked it. The loveliness of the prose plummets into a scene of private humiliation, and particularly so as the narrative then shifts back to the event that had reminded the boy of this memory, that of being shown obscene pictures by his brothers

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as a gesture of brotherly fellowship yet, unlike them, prevented by his immobility from hiding his arousal. In representing adult sexuality and disability, Brown had a more difficult task given the widespread and still current assumption that disabled adults are either asexual or that their sexuality needs to be constrained and regulated.8 A scene in his autobiographically inflected novel A Shadow in Summer (1974) addresses a first sexual encounter between the disabled Irish writer who is the protagonist and the married American woman who loves him. The passage recounts their desire as well as their failure, which comes about for physical reasons that are left strangely obscure considering how graphic much of the description is. The writing is clichéd and artificial (the novel was written quickly during a period when Brown’s alcoholism had become debilitating), but despite its stylistic faults, the novel persuasively conveys how much the prospect of sexual intimacy was both terrifying and longed for, how much its emotional and physical success would have depended upon good communication (which the couple did not have in this matter), and how alienated and distressed the experience left him, “feeling nothing at all except the bitter bite of failure” (Brown 1975, 76). In a letter written in 1964, Brown explains to Katriona Maguire the legitimacy of the erotic dimension of his feelings for, in this case, not Beth Moore but another woman. He writes an impassioned manifesto arguing the need for a sexual life in the face of an uncomprehending world. Among the highlights of this important letter is the following declaration: You may think I am…indulging in daydreams that may be disastrous to someone in my position, and you may be right; but I could not live otherwise….My interest in her, as in every other beautiful woman, is phallic as well as mental; far from ignoring the sexual aspect or trying to sublimate it into something supposedly ‘higher,’ I regard this as one of the most important things in any human man-and-woman relationship….When I am involved, I am totally involved—heart, mind, and not the least phallus….I don’t see why—I have never seen why…I should bury my male tendencies…simply because I am physically deprived of their full and natural expression. I do not want to be any kind of a eunuch; they may as well castrate me and have done with it as to try to talk me out of having sexual feelings because of my crippledom. (Brown Papers, 739/8/22)

This letter is especially striking for several reasons, particularly given the ways disabled bodies have been both subject to scrutiny and hidden away,

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and in many cases requiring the physical intervention of others while also needing the same privacy afforded to the nondisabled in order to maintain a sense of personhood.9 Brown trusted and respected Katriona McGuire; for him to introduce the matter of his own sexual desire with her in such frank terms is to insist that while his sexuality is a private matter, nevertheless it is not a private matter that is inherently shameful. Although some of his bodily functions could not be fully private, as he needed help with urination and frequently asked near-strangers in pubs to assist him in the toilet, he here refuses to have his own sexuality subject to suppression or regulation. Lastly, he defines his sexuality not in terms of lack but of “natural feelings” whose suppression would be equivalent to castration. In light of the ways men with disabilities have been historically perceived as castrated, the power of his assertion cannot be overestimated. Although different from A Shadow in Summer because of the younger age of its protagonist, Down All the Days also situates sexuality within the context of disability. Brown writes of experiences that have rarely been chronicled in any genre until very recently. A hospital examination procedure, for example, proves humiliating when the boy responds sexually to being touched. He is undressed and catheterized by young female nurses, and a kindly, soft-spoken doctor “began to touch and massage that part of him which was associated in his mind with two things—the lavatory pot, and the big black unnamable sin of which the priest spoke in such mournful tones” (36). Brown’s prose gives insight into the mute responses of one who cannot express what it is to be on such an examining table: He was not being hurt too much, but his face felt like a roaring furnace, for he was being touched and known in such a way and on such a part as never before, and he wanted to cry, or shout, or kick out in rage, anything that would save him from this awful indignity and stop this complete stranger from using his body and limbs in this frightful way; but the man seemed rather remote and absorbed as he pressed and kneaded the testicles slowly and dreamily, enquiring softly in between the firm, rhythmic movements of his hands if it hurt. There was some pain, but slowly it dulled down to a sort of sluggish ease, and then to a turgid, unexpected sort of pleasure that was unwanted but insistent; it kept rising in him, this glad guilty feeling. (36)

Christy Brown is not the first or the last to render a boy’s conflicted experience of sexual response, but here the context is specific to disability experience. Brown also balances explicit description and psychological

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complexity without the self-deprecating comedy of some of his responses to interview questions or letters to his brother Sean, and without the vulgar and typically misogynist language in which the boys and men of his community discussed sexual matters. The doctor quickly moves away and returns the cover sheet when he notices the effect of his hands; two young nurses later laugh at a similar occurrence, as if their patient could not hear them. In both scenes, doctor and nurses react in ways that are rooted in sexual shame. But this narrative is focused on Christy, not the normative bodies of the medical personnel. A working-class disabled child in a hospital is denied the capacity to feel shame. When his body is exposed and reacts in a physiologically natural way, he becomes an object of mutual embarrassment. Just as vivid is his description of pain, in this case resulting from an unidentified type of urinary blockage. While another can see symptoms of pain by observation and a doctor can describe what happens inside the body, this testimony is experiential: He was crawling down a long dark tunnel of pain; the walls seemed about to collapse, to fold in upon him; everything seemed to be breaking up, dissolving, disintegrating; he seemed to be stuck, submerged in a sort of gum mucilage; sharp brittle points of light flashed before his eyes; into the loud confusion of his mind things swam—forceps, scissors, syringes; clouds of nausea descended on him, stifling him, but he kept doggedly crawling towards a distant light, the remote yet glowing mouth of the tunnel, crawling through sluggish slime with agony at every inch; a queer boiling and seething began to rise in him drowning his brain, beating at it, bruising it; suddenly a great gaping hole opened before him; the ground swung, tethered, plunged; he was falling in wave upon wave of sickness, falling…He tried to turn on to his side, but could not; a gust of pain swept through him, leaving him breathless; slowly one pain inside him began to overwhelm all the others; it felt like a weight that slid and rolled from side to side as he moved, swelling and growing inside him. He started to sweat, the drops clinging to his eyelashes, glistening like dim stars seen through a haze. This particular pain then grew and grew, mounting to an agony until he was ready to scream. Then the green curtains shook; a great blob of light came through, widening, dazzling; a shadow stood against the light; it was all dimness again, the metallic tinkle of instruments on a tray. (Brown 1990, 34)

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Brown plunges the reader into this visceral experience without warning or explanation. We are within the consciousness of “he,” crawling ourselves toward a comprehension of what is happening. The preceding chapter offers no prelude to the scene, and not until the end of the long paragraph do we know why he is in the hospital. That information is delivered by “a man’s voice,” which tersely informs a nurse, “Some difficulty with urine” (34). Set against the six verbal constructions that describe his own actions—falling (twice), crawling (twice), and being stuck and submerged—are seventeen verbal constructions describing either fragmentation and dissolution or the assault of a powerful and uncontrollable force. As characterized by Elaine Scarry, intense pain is “experienced spatially as either the contraction of the universe down to the immediate vicinity of the body or as the body swelling to fill the entire universe” (Scarry 1985, 35), and here, the body in pain is helpless against the onslaught and incapable of perceiving anything besides its own universe of feeling until the “metallic tinkle of instruments on a tray” penetrates its isolation (Brown 1990, 34). In passages like these, Christy Brown goes far beyond what he was able to do in My Left Foot. The plain style of the latter, the progressive track of its action, and the concluding achievement of a quest for expression and recognition produce one kind of story, and one that has continued to be more popular among a general readership. Down All the Days, however, creates a more stylistically challenging text and one that challenges equally the preconceptions of its readership regarding the nature and form of narratives about disability .

“Hollyberried Imaginings”: Christopher Nolan’s Under the Eye of the Clock Seventeen years after the first appearance of Down All the Days, Christopher Nolan published a very different yet also stylistically challenging book that, like Brown’s, draws the reader inside the lived experience of disability in Ireland. Both writers had athetoid cerebral palsy deriving from birth trauma, produced books that were much celebrated during their lifetimes, and died of pulmonary aspiration in their forties. Like Brown, Nolan at first communicated with his immediate family through nonverbal sounds and a few limited gestures. Just as Brown discovered writing as a small child by holding chalk between his toes, Nolan learned at the age of eleven to compose on a typewriter with a touch stick attached

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to his forehead; later, he could use a computer unassisted. Both wrote their most mature works as autobiographies in the third person, although Nolan names his character “Joseph Meehan,” whereas Brown leaves the boy of Down All the Days unnamed. But there resemblances end. Nolan never developed intelligible speech and was unable to control his movements beyond facial expressions, head nods, and vibrating his feet. Whereas Brown was a voracious reader, Nolan was unable to turn the pages of books and explains in an early autobiographical sketch that reading was arduous for him because his brain would transpose the letters of a word so that he saw its mirror image; he would then have to mentally reverse that image in order to comprehend the word (Nolan 1981, 11–12). They also grew up in vastly different eras. Christy Brown was already twenty years old when Kathleen O’Rouke and Lady Valerie Goulding established what would become the Central Remedial Clinic, then located in one small room on Upper Pembroke Street. By the time Nolan attended the CRC, it was situated in the comfortable suburb of Clontarf as a full-fledged treatment facility with an adjacent normal school. Although he was one of the most physically impaired children in the school, there was never any question of his not being educated. The Browns and the Nolans were also of distinctly different class backgrounds. Joseph Nolan was a trained psychiatric nurse and the Nolan family owned a farm near Mullingar. They let the farm in order to purchase a house close to the CRC so that Christy, as he was called, could enroll. Nolan’s mother was an avid reader of literature and had worked as a bookkeeper before her marriage. Most tellingly, the family owned a car and he, his parents, and his sister Yvonne were able to take vacations in Kerry during the summer. When Nolan wanted to continue his schooling beyond the primary level, his mother and father successfully advocated, over considerable opposition, his admission into a local comprehensive. Upon graduation, he gained admission to Trinity College and they helped him with transportation and with the reading and writing required for the literature curriculum he began but decided not to continue, he explains, because of his concern about the labor his studies required of his family. While Nolan did not face the economic and social conditions that shaped Christy Brown, his writing, like Brown’s Down All the Days, situates the self within a precise social milieu. His work never speaks directly to identities of class or nation, nor even of the attachment to a specific neighborhood that Christy Brown expresses in his books and correspondence. Family provides Nolan his most fundamental identity,

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and his adoption of his father’s first name, “Joseph,” as the name of his autobiographical protagonist even in the earliest version of the memoir points toward the importance of inscribing himself as his father’s namesake. Although at times the word normal pertains to aspects of body and social life that he cannot achieve (and at other times is an epithet of scorn for the bigoted and restrictive powers that seek to sequester him), his parents and sister perceive that he is “tongue-tied but normal-notioned” (84), and his sister “challenged her spastic brother to be as normal in his outlook as she was normal in her treatment of him” (35). Nolan associates normality with a sense of belonging, and while he is understood to be “normal-notioned” within his family, a more conflicted social world appears at both the CRC school and Mount Temple School, the comprehensive where he came of age “under the eye” of its tower clock. School becomes a site where community is no less treasured and is often achieved, but remains tenuous and fragile. He describes the CRC as “a caring collective society” that provides him with rich memories of companionship, although his lack of speech and control over his “frenzied limbs” occasionally make him a target for ridicule (8–9) by his less disabled classmates. At Mount Temple, where he appears to be the lone disabled student, his teachers wholeheartedly value his presence and some of his classmates enthusiastically befriend him, but others mock or avoid him.10 Early on, his friend Frank Ryan attempts to defend him against the ridicule of other students and in frustration tells him, “God, I’d love to give them a kick in the puss, but then what good would that do? Ya can’t beat sense into the bastards, they see themselves as normal and the assholes can’t see further than their own noses.” Frank’s vociferous defense, along with the affirmation of other boys, moves him greatly, as he “fumbled with his feeling for friends such as his” (30). Normality as an ethical attribute of concern for the welfare of those within the social unit proves to belong not to those with normative bodies who, in Frank’s words, merely “see themselves as normal,” but to those who come together in community. Nolan perennially navigates the distinction between what Erving Goffman, in his classic study of stigma as a social phenomenon, calls virtual and actual social identity. Virtual identity is dominated by a stigmatized feature. In Nolan’s case, these features would be defined in terms of lack. His lack of motor control and speech belie his actual identity as a boy of intelligence and humanity, traits which, were others able to perceive them, would be valued rather than stigmatized (Goffman 1986).

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Intermittently bullied and accepted at school, Joseph feels “bullied and badgered constantly” by “his need to find time to express his thoughts” (30). The work of composition and his discovery of a particular kind of language occupy as important a place in Under the Eye of the Clock as does his portrayal of the processes of stigma and his struggle to move past it. Repeatedly, Nolan sees his literary writing as a means to that end. With the discovery of baclofen as treatment for spasticity, Nolan was finally able to communicate. The drug allowed his muscles to relax enough that, wearing his “unicorn stick,” he could laboriously type while his mother cupped his chin so that his aim might be more accurate. A few years later, he learned to use a computer that allowed him to work unassisted and at a much greater speed. The style he achieves, however, is by no means normal. Instead, it flies in the face of ableist notions of order while at the same time expressing vividly what it is to live inside his particular body. His neologisms, compounded nouns, and long strings of alliterative phrases are so idiosyncratic that, like Brown, he seems to create a new language for relating consciousness and embodiment. Nolan’s first communication to the world came in the shape of a poem that even then demonstrated the condensed and alliterative phrasing that his writing would always display. In his first book Dam-Burst of Dreams (1980), a collection of short writings published when he was just fifteen, more conventional letters to relatives and small essays on various topics contrast with the startling imagery, vocabulary, and sound effects of his poems and literary prose. Speaking of himself in the third person, he recalls being asked how he had developed such an arcane vocabulary and “longed to be able to say that he only knew that as he typed thoughts, brilliant, bright, boiling words poured into his mind” (1980, 23). “My mind is like a spin-dryer at full speed, my thoughts fly around my skull while millions of beautiful words cascade down in my lap,” he told an interviewer in 1987. “Images gunfire across my consciousness and while trying to discipline them I jump in awe at the soul-filled bounty of my mind’s expanse” (Grimes 2009, A18). No drafts of his work remain, and no one has described watching him write. Some of his language is so unusual and so literary that it seems reasonable to imagine that Bernadette Nolan contributed to his phrasings, as well as assisting him with matters of punctuation and organization. If she did indeed partly author his text (and, again, we have no way of knowing this), that would take nothing away from the startling originality of

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what was published or the value of its perspective. In discussing questions of authorship and ethics in the case of I Raise My Eyes to Say Yes, Thomas Couser argues that even if specific word choices are not those of Sienkiewicz-Mercer, the importance hearing of the otherwise inaccessible perspective of someone with locked-in syndrome outweighs others concerns. He notes the irony implicit in the effect of “translating” her rudimentary language into “a fluent detailed narrative” which simultaneously silences her own voice by normalizing it (Couser 2004, 38–39). The contrast with Christopher Nolan’s distinctly non-normative language is readily apparent. Although readers might wish for greater transparency regarding collaborative authorship involved in the production of Under the Eye of the Clock, any contributions to Nolan’s system of language-making, whether from his mother or someone else, amplify its effect rather than silencing his voice. In Under the Eye of the Clock (1987), he describes the process of composing the writings that became his first book: …bibs-bedecked he bashfully brought forth droned, bespoked letters bested onto a page by a bent, nursed and crudely given nod of his stubborn head. As he typed he blundered like a young foal strayed from his mother. His own mother cradled his head but he mentally gadded here and there in fields of swishing grass and pursed wildness. His mind was darting under beech copper-mulled, along streams calling out his name, he hissed and frolicked but his mother called it spasms. Delirious with the falling words plopping onto his path he made youth reel where youth was meant to stagnate. Such were Joseph’s powers as he gimleted his words onto white sheets of life. (26–27)

Having “for years clustered his words” as “hollyberried imaginings” (57), he understood the differences between conventional style and his own methods, but declared in an early poem that I endangered my freedom of expression …if I did not disembowel My notorious madness, in impeccable Language, agonizingly written, in numerous Tantalizing, spasmodic-ridden onslaughts, On a rickety, moaning, typewriter (Nolan 1981, 109)

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This strange style, he proclaims in Under the Eye of the Clock, is vital to his freedom and to the creation of a book which, he says, “made sense of his life” and let him see “a reason for his being given a second chance at birth” (97). The relationship of these fiercely defended “hollyberried imaginings” to the condition of being that Nolan wished to express provokes the question of what might constitute a disability aesthetic. Might literary language emanate differently from different bodies? Or might the articulation of certain embodied experience require new language and new forms? At the very least, might consideration of the embodiment of both writer and reader lead to fresh understandings of the possibilities of style? The question has been taken up by many who have queried the origin and effect of ableist metaphors, for example, as well as by disability scholars such as Tobin Siebers (2008) and Michael Davidson (2008), both of whom explore the ways disability may reconfigure aesthetic composition and reception.11 All three questions can be answered in the affirmative when looking at Christopher Nolan’s work. In the most material sense, his style is closely related to the specific nature of his disability and his means of composition. For Nolan, learning was almost entirely aural, which most certainly contributes to the tremendous emphasis on sound, especially alliteration, in his literary prose. Those clusters of words, often taking the form of invented compound nouns, may in part derive from a method of communication that he had used since childhood, that of casting his eyes on two or three objects that, taken together, create a meaning.12 Tom Coogan argues that because of the slowness of Nolan’s typing and the multifaceted physical effort of staying in position and relaxing his muscles sufficiently to strike the correct keys, “his creativity becomes less Cartesian (the mind escaping its prison), and more a living-throughthe-body experience” (287). In the “staccatoed style” which results, he records how it feels to be Christopher Nolan, suggesting that curious visitors might cup his chin in their own hands and “feel the undercurrents of electricity running and molesting his attempts to strike a letter….Only thus could he explain why his rhythm of sound was jumpy and jarring on the ear” (Nolan 1987, 90). It is not spasticity that produces this style— he could write conventionally when he chose to—but his style enables him to reproduce the “electric pulses” which governed his body (27) and communicate not only his thoughts, feelings, and experiences but the physicality of his being.

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Defining Nolan’s work as having “a distinctive literary style that can best be understood through its origins in his disability experience and identity,” Coogan also contends that “the literariness of Nolan’s writing arises in part from a subversion of ‘ordinary’ ableist language that emerges from Nolan’s disability” (Coogan 2012, 278). He includes as part of this “subversion” Nolan’s rejection of the medical, religious, and social “scripts” which have dominated discourses of disability. He also argues that Nolan pointedly rejects orthodox forms of memoir (and, I would add, the antecedent of My Left Foot ). In its place, Nolan offers a thirdperson narration in which he creates, as a literary act, a boy named Joseph Meehan who is nevertheless the subject of a book subtitled The Autobiography of Christopher Nolan.13 The originality of such a project is by his own admission an attempt to subvert the expectations of an uncomprehending world. Listening to a lecture on Joyce while at Trinity, he reflects that he too “nadir-aspired to mould his only gift into briny, bastardized braille so that fellows following never had to nod yes to mankind’s gastric view that man speechless and crippled must forever be strolling as underlings to the yapping establishment” (1987, 161). Bristling with energy, sure of its own power and fending off by its very existence the oppressive force of social stigma, Under the Eye of the Clock takes its place as a work of resistance.

Stewart Parker’s Hopdance: Body and Soul Introducing her discussion of the autofictional work of Jeanette Winterson, Leigh Gilmore asserts that Winterson defies autobiographical conventions “not because they are unrelated to her project, but because they are central, and resistance offers a renewable and resilient mode of engagement.” She continues, “Autobiography’s attention to names as markers of identity, its tension about the relation between historical verifiability and the limits of memory, its distrust of fantasy, dreams, and the imagination, its multiform history and patchwork present tense all offer…grounds for an experiment in (self-) representation focused on sexuality, love, and loss” (Gilmore 2001, 120). Stewart Parker’s Hopdance (2017) similarly engages and challenges the genre of autobiography and in so doing offers its own experiment in self-representation focused on the relation of identity and body. At the same time, his work queries what happens to one’s sense of continuity after a sudden and traumatic alteration of the body.

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Presented as a novel, Hopdance eludes the “patchwork present tense” associated with memoir, but it oscillates between a narrative past and a past that has occurred before the main thread of action. Structurally, it is also a kind of patchwork, published for the first time almost thirty years after the playwright’s death and assembled by his biographer, Marilynn Richtarik, from drafts written over more than two decades. Parker began to write about his experience in 1970, nine years after his leg was amputated and when the fear of cancer appearing in the other leg had somewhat abated. He completed a draft in 1975 and continued to tinker occasionally with the manuscript, adjusting the order of its episodes and revising sentences. In a 1977 interview, he claimed that he had ceased to work on the manuscript because its purpose had been personal and therapeutic (Richtarik 2012, 118). He confessed in his unpublished journals that he felt “apathetic” about it and wished to concentrate on his plays (quoted in Richtarik 2017b, xiii). He returned to the manuscript in the early 1980s and again during the summer of 1988, altering its focus to more of an aesthetic autobiography along the lines of Portrait of the Artist as a Young Man. The book remained unfinished, as Parker suddenly and unexpectedly died of stomach cancer in fall of the same year. Richtarik’s painstaking editing produces an effectively integrated whole that is nevertheless true to its author’s intent to downplay chronological ordering in favor of what he called in an earlier unpublished work, “a sequence of narrative images which will enact themselves simultaneously in the reader’s mind when he has finished reading them by the intricate way in which they are connected” (quoted in Richtarik 2017b, xv). A vivid rendering of Belfast during the early 1960s and undergraduate life at Queen’s University alternates with internal monologue, scenes from the past, and the dreams and hallucinations brought on by both pain and the pharmaceuticals prescribed to suppress it. Like Down All the Days and Under the Eye of the Clock, Hopdance is narrated in the third person and its protagonist does not share its author’s name. The overarching narrative follows the inner and outer experience of Tosh, a young university student with literary and theatrical interests, a hypochondriac mother, and Prudence, a girlfriend who spends most of her time crying or tottering on the verge of tears. Tosh undergoes the onset of acute leg pain that is eventually diagnosed as bone cancer, the amputation that quickly follows the diagnosis, and an arduous adjustment to a prosthetic limb. By creating Tosh, Parker distinguishes his younger incarnation from an omniscient third-person voice that the reader may

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associate with the author’s own. He thus bypasses one of autobiography’s most distinctive features: present-tense exposition about the relationship between the autobiographical persona as representative of the author and the narrativized past self. Without the commentary in retrospective present tense that is characteristic of memoir, the narrative voice knows no more and no less than its protagonist does. Even the “flashback” scenes that abruptly interrupt the action receive neither introduction nor interpretation. Eliminating the expected reflections on the meaning of his experience turns the focus on the experience itself as endured by a nineteen-year-old boy who is often self-centered and bewildered. Tosh has no interest in discussing how he feels, and he acknowledges the consequences of what has happened to him only in the book’s final pages. The distancing of protagonist from authorial self is akin, although not identical, to the bifurcation of old and new self endemic to stories about sudden changes in the body. Despite actor Christopher Reeve’s assertion in the title of his first memoir, Still Me (Reeve 1999), most who have written about having undergone a major physical alteration attest to the feeling of having ended one life and begun another.14 It becomes Tosh’s work to negotiate the gulf between his very different embodiments and, even more fundamentally, between his mind and his body and between himself and others. His questions are persistent: What is the relationship between consciousness and the body? If the body alters, can the self be sustained as an integrated whole? Paralleling the strategic disassociation that Parker achieves in writing his memoir as a third-person novel, his protagonist experiences moments of disassociation from his own body, particularly when it wrests control from his mind. Thinking ahead to the morning when his leg will be removed at the thigh, he determines that “the only resource he was aware of was the voice in his head itself, the fact of his own consciousness, and it was telling him that tomorrow it itself will be drowned in gristle and blood and then he would have no resources at all” (Parker 2017, 47). Soon after the amputation, as bandages are pulled away from his suppurating stump, Tosh is reduced to little beyond the sensation of pain, and even morphine does not succeed in giving him back himself; instead, “he thrashed about and twitched in an agony of derangement” (62) as if invaded by forces over which his mind can exert no discipline. Even the title of Hopdance anticipates this loss of autonomy. It may evoke the jaunting dance of a minstrel figure or the idiosyncratic rhythms of walking with a crutch or prosthesis, but the lines derive from Shakespeare’s

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King Lear, as given in the epigraph. Disguised as Mad Tom O’Bedlam, the exiled Edgar calls out, “The foul fiend haunts poor Tom in the guise of a Nightingale/ Hopdance cries in Tom’s belly for two white herring/ Croak not, black angel; I have no food for thee” (III, vi, 2034–36). The cunning figure of Hoberdidance who infests the hosts in whom he dwells prefigures the cancer that invades Tosh and alters him. Metaphors of invasion are common in narratives of cancer, but in Hopdance the foul fiend comes not only as tumorous growth but also as the pain that Tosh admits “took me over completely” (42). As Hopdance cries for herrings, the black angel demands Tosh’s removal from the world he knows. The old self seems to have fallen away. Awaiting the biopsy of his bone that will take place the following morning, Tosh changes into the hospital garb and “slowly he shed the street clothing which seemed now like an old elaborate disguise.” His existence, he considers, “was at its solitary climax for him….He had a powerful sense of having reached the end of his growing…..he would have arrived at last at the unknown life which he was destined to live. It would be his own life and he would have to live it with whatever resources were available. In the meantime a wave as tall as a ship was creeping soundlessly towards him over the dark water” (48). The visitors who crowd into his room after the biopsy “belonged now to two different kinds of real life and there was no point of contact, an invisible magnetic field was pushing between, keeping the distance constant” (51). The old life seems so remote as to be grotesque and absurd: the whimpering of Prudence, the “braying” of his evangelical Presbyterian relatives, the endless complaints of his mother, the chatter of his university friends. He perceives himself, like the narrator of Samuel Beckett’s Company, to be “one on his back in the dark,” to whom memories come as if from another voice (Beckett 1996, 3). Beckett, Tosh has claimed earlier in Hopdance, writes in a “post-personal” mode (7), suggesting less the current controversial application of the term to people with communicative and memory disorders than the sensation of detachment from what constituted a “personality” in the past. Like the characters of Beckett’s plays, the narrator of Company exists within a present whose relationship to what he remembers as the past “cannot be verified” (Beckett 1996, 3). Accordingly, the narrator of Company refers to the self-figure in his memory as “he,” and similarly, Tosh finds himself wondering if he has not died to his past. What faces him, he thinks on the evening before his amputation, “would certainly be some form of death.” It will most certainly be a death to the body he has previously known.

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Already, his leg is as remote to him as will be the “large bunch of artificial legs…stacked upright” he later observes at the office of a prosthetic fitter. Reminded of the stacks of prostheses in photographs from Auschwitz and Belsen, Tosh, whose name is a slang term for “rubbish,” thinks of them as a “a kind of human refuse. Detritus of bottles and tin cans in the white sand of a desert” (85). His own leg he views with a disengaged interest and pity: He pushed back the bed-clothes and placed his left leg on top of them. He wouldn’t be the same person after they took it away. A quarter of him would have disappeared. He studied the leg intently, memorising it. From thigh to ankle it looked sick and defeated, with its wasted muscles and white hairlessness and the six-inch vertical scar down the front crossed at intervals by stitch-marks, like a cartographer’s railway line. But the foot clearly wanted to live. It was forlornly expressive like an eager dog staring into the muzzle of its master’s shotgun. (47)

The prospect brings him a tender affection for the foot despite, or perhaps because of, its innocent ungainliness: “Its nails were slightly yellowed and needing trimming. An ancient fossilized corn rounded out the smallest toe….For all that, there was a harmony of line and proportion at which Tosh marvelled” (47). As he anticipates the loss of a part of himself, he sees it as something also distinct from himself—an unfortunate dog or an object of aesthetic merit. His mind, as well, appears distinct and selfhood a kind of hovering metaconsciousness: “he was aware of taking conscious pleasure in the rational processes of his mind for the first time in his life, just as he had perceived the shapeliness of the human foot for the first time” (48). And of the relationship between mind and body? That produces insistent questions that remain unresolved for Tosh: Is this me, this head voice? Are you Tosh, hey? That warm bath with the wound in its middle down there. That is your body. That’s you too. Where do I end? Your shaved off stubble, is that part of this body dragging me down? There, I don’t think of it as me, I objectify it. But other times I do, when you come, when you swim. Voice immersed in body. Then I love it. Bodies. I could cry for bodies. If this one’s eye weren’t parched. (29)

As Clare Wallace observes in her perceptive review of the text, “The flux of pronouns in such interior monologues deliberately complicates any easy

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presumption of rational safe distance or superior knowledge; body and mind roil together” (Wallace 2018). The body cannot be dominated by the mind, and the mind is subject to the body, even as it produces the words that will eventually create a communicative self. Unlike Christy Brown or Christopher Nolan, Stewart Parker does not write about a life within a body he was born to. Hopdance recaptures the experience of a rapid and shocking change in the self-perception of a man not yet twenty, a perception that is also hounded by the way “others see me. Scary ghost. Sad freak…halt scarecrow” (5). Although Parker depicts a period of time in which he felt pathologized, his book does not entirely pathologize its subject. In the final section, Tosh has so internalized the way he imagines others see him that he views himself as if from the outside, “a scarecrow pendulum on the loose, suspended between the metal crutches, clank of his weary bones,” moving through the dank grey city like “a dwarf hobbling through a wilderness of towering headstones” (134). Half flesh, half metal, shrunken in his mind’s eye, Tosh appears abject. And yet the scene ends in a vision of human community surpassing anything that Tosh has experienced with his family or friends. He slides down on the ground next to an old man with a “stump in the cut-off trouser leg” (134). The aged beggar, presented as Tosh’s double, simply asks, “What’s your story, son?” Invoking the first time the firstperson narrative pronoun, the book concludes with the lines, “So I tell him my story. And at last free. Peace, for a brief spell, at least. Peace” (135). This ending may be read as gesture toward what Marilynn Richtarik identifies as Parker’s efforts in later drafts to parallel Tosh’s development as a writer with his development as a human being: “The amputation, Parker suggests, prepares him to become a serious writer by forcing him into a more authentic relationship to life” (Richtarik 2017b, xvi). Citing lines from Tosh’s one-sided conversation with Prudence, Clare Wallace, too, concludes that “What he comes to realize is less his own exceptionality, than how suffering illuminates that ‘we’ve got everything in common, including a conviction of personal uniqueness’” (Wallace 2018). Similarly, Katarzyna Ojrzynska ´ traces Tosh’s evolution from his efforts at passing to what she calls the embrace of narrative witnessing (Ojrzynska ´ 2019, 141). These progressive readings are entirely commensurate with both the scene of communion with the beggar and with Tosh’s maturation from the early scenes in which he merely performs without conviction the roles of lover, friend, student, and son.

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Progression, however, is a slippery claim. Richtarik notes that “Hopdance does not present his steady progression toward enlightenment, but rather flashes of illumination interspersed with episodes displaying…self-delusion” (Richtarik 2017a, 97). Moreover, as the American poet and memoirist Kenny Fries has written in the introduction to his Body Remember, “There is no overcoming my disability, only a movement toward a different understanding of the place disability has in our culture and in our lives. There is no resolution because the narrative of disability is not a narrative of answers. The narrative of disability is a narrative of questions” (Fries 2003, xii). As for disability’s place in his culture, Parker has little to say directly about the ideologies of working-class Northern Irish Protestantism in which he grew up, except to depict as monstrous invasions the unrelenting “muffled lugubrious” prayers of his evangelical relatives and visitors (68). If we take the second of Fries’ twin sites of disability, “our culture and…our lives,” then it can be said that Hopdance explores exactly this question of how Tosh, in a different body and with a different relation to the world, will make a life. The answers fall beyond the pages of the book. It is with the questions that we conclude, questions that point toward a crucial recognition of interdependency. Tosh confesses to a visiting friend and simultaneously to himself, I’ve been away a fearful distance, Florence. I want to come back to life. I can’t do it alone. I need some soul to meet me…. The mind makes these bones talk. And the words are all we have. And beyond the words and the mind is where you feel you live. An illusory place, probably, a void, a necessary fiction. So where do you start, Florence? Where does a soul find its mirror? I’m waiting for the kiss of life. It’s only through each other that we even begin to exist at all. (133)

The scene is characteristically deflationary in that his friend’s response to this declaration is to tell him that Prudence, whom he has no wish to see and from whom he has extricated himself with some difficulty, wants to get together again. Nevertheless, Tosh’s words are urgent and engender in the book’s final paragraph that first and only shift from the third-person narrator to the autobiographical “I” during his conversation with the old beggar. Whether the pronoun finally emerges in an autobiographical text or whether the writer chooses for all the various reasons that have been

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discussed to hold back from that declaration, Hopdance, like the work of Christy Brown and Christopher Nolan, extends the aesthetic possibilities of a deeply embodied life writing.

Notes 1. The descriptive category “self-narrative” is a formulated by Arnaud Schmitt (2010) who also provides a helpful overview of these different perspectives. 2. In My Left Foot, Mrs. Brown becomes concerned about Christy’s physical condition at about four months, a date Robert Collis repeats in a medical article concerning cerebral palsy (Collis and O’Donnell 1951, 387). In contrast, the script of the BBC adaptation broadcast shortly after the book’s publication, and thus quite possibly drawn from interviews, includes a monologue in which Mrs. Brown recalls that Christy screamed constantly and had to be removed from the baby nursery at the hospital. In the script of the radio play, she explains that he was unable to nurse because he could not maintain a sucking motion, and she was warned not to feel the kinds of hopes that a mother would have for an ordinary child. Because children with sucking disorders were frequently fed with syringes from infancy into early childhood, the dialogue in the play is very plausible. Although it is impossible at this date to conclusively determine if writer Marianne Helweg drew from Mrs. Brown’s memories, it does seem unlikely that medical personnel would not have understood his condition to be precarious and requiring particular kinds of attention (Capell and Helweg 1954). Robert Collis also remarks on the general lack of care available for infants following birth as an endemic problem in Ireland (Collis 1975, 77). 3. As late as 1970, a London Times article heralding the imminent publication of Down All the Days declares that “Christy Brown is outwardly a helpless, speechless, lolling baby,” and a follow-up article in The New York Times refers to him as “a brain-damaged vegetable, unable to walk, talk, feed or drink without help, totally uneducated.” Not only does the focus upon the writer’s body continue to take precedence over literary matters but does so in the most insulting and inaccurate terms (Brien 1970, 48). 4. The Daily Worker headline as shown in the Radharc documentary (Radharc 1962; The Sunday Press, cited in Hambleton 2007, 28; Hannah, 1999, 47). 5. In a brilliant reading of Down All the Days as working-class literature that revolts against the structures of church and state through its critique of sexual repression, Michael Pierse traces its subtle undercurrent of bildungsroman, such as an implied parallel between Brown’s own aesthetic

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6.

7.

8.

9. 10.

11.

12.

ambitions and the work of his father, whose hands are not only frightening and “hard-as-nails” but “alert and agile with the bricklayer’s trowel and chisel…magically moulding a patchwork pyramid of cemented rectangles to enclose the lives, loves, labours, passions, despairs of innumerable strangers; those master craftsman’s hands turning deserts of empty spaces into jungles of human dwellings” (See Pierse 2011, 194–206). R. Brandon Kershner has a provided a detailed analysis of the parallels between specific scenes in Down All the Days and Portrait of the Artist as a Young Man. He describes both books as seeking “the situation of the subject in history” through multiple narrative positions, forays into multiple genres, extensive free indirect discourse, and features of social realism. Brown was especially irritated by the attempts of bourgeois writers to represent the working class world that, since the era of Sean O’Casey’s Dublin trilogy, had been a favorite subject matter for the theater. He struggled to extricate himself from a collaboration with Robert Collis on the grounds that Collis had only an observer’s limited knowledge of how characters of that class would think, talk, and behave, and that their play would be ludicrous to anyone truly familiar with the culture. See Hambleton (2007, 114–15). As Russell Shuttleworth explains in his introduction to a special issue of Sexuality Research and Social Policy, sexuality and disability studies did not emerge as an area of either activism or academic inquiry until the twentyfirst century, despite calls for attention to the subject by earlier activists and researchers. See Shuttleworth (2007) for a review of the critical literature up to that point. Tobin Siebers (2008) offers a discussion of this very paradox. In a RTÉ radio program about Nolan, two of his classmates debate the degree to which he was accepted at school, one insisting that he was wellliked and the other recalling incidents of mockery and social exclusion. See Farrelly (1981). Davidson observes, for example, how parataxis and spatial design in the poetry of Larry Eigner derives, at least in part, from Eigner’s self-described compositional practices, developed to accommodate his difficulty situating paper in a typewriter due to cerebral palsy (243). From the perspective of the receptor of art, Davidson observes how Deaf poetry caused him to rethink his emphasis on text and sound and instead, to consider “the visual, spatial, and communal nature of poetic production” (223). Disabled artists, and the presence of disabled bodies in art, he argues, may disrupt language and expectation in potentially generative ways. This aspect of his style has been compared to that of G. M. Hopkins, but Nolan became familiar with Hopkins only after publishing Dam-Burst

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of Dreams in 1981. A reporter for The Washington Post provides this description of Nolan’s method of combining nouns to create meaning: Conversing with Nolan is like a complicated game of charades, or 20 Questions. Struggling to control the direction of a random body movement, he gestures broadly to objects around the room that provide clues to his meaning. A correct guess brings an upward movement of his eyes that says “yes.” The listener pieces together a thought from a series of such clues. An electric space heater on the floor, together with agitation of his feet, is part of an answer, “cold feet,” to the question of why he found it difficult to type during his initial attempts at age 11. A fleeting glance toward a hand-drawn greeting card displayed on the mantelpiece, and an invitation to read it, begin another response. Successful interpretation is rewarded with his gleeful laugh. (De Young 1988) 13. Coogan continues, By implying calculating self-consciousness on the part of Joseph the author, Nolan inevitably, and presumably deliberately, invites examination of his own intent. He demonstrates his artfulness and self-awareness, but also his understanding that the reader will be aware of it….He expresses both his individual agency…and his grasp of the system within which it must function….He highlights the processes of creation, but also the process of reception in the form of the status accorded to certain elements as “literary.” (Coogan 2012, 286–87) 14. Examples abound in American life writing by people who became disabled in adulthood. The American novelist Reynolds Price, who became paraplegic in middle age, speaks for many in advising his readers of the need to “abandon the death watch by the corpse of your old self” (Price 1994, 188). This question is further explored in the discussion of memoirs by athletes that follows in Chapter 5.

References Beckett, Samuel. 1996. Nohow On. New York: Grove. Borel, Françoise. 1976. “‘I Am Without a Name’: The Fiction of Christy Brown.” Cahiers Irelandais 4–5: 287–95. Brien, Alan. 1970. “London: Christy Brown’s Triumph.” New York Times, February 9, 48.

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Brown, Christy. 1975. A Shadow on Summer. New York: Stein and Day. First published 1974. ———. 1990. Down All the Days. London: Mandarin. First published 1970. ———. 1998. My Left Foot. London: Vintage. First published 1954. Capell, Eileen, and Marianne Helweg. 1954. My Left Foot: The Story of Christy Brown. Christy Brown Papers, MS 49,739/4/1. National Library of Ireland. Collis, Robert. 1975. To Be a Pilgrim: The Autobiography of Robert Collis. London: Secker and Warburg. Collis, Robert, and Mary O’Donnell. 1951. “Cerebral Palsy.” Archives of Disease in Childhood 26 (129): 387–98. Coogan, Tom. 2007. “Me, Thyself and I: Dependency and the Issues of Authenticity and Authority in Christy Brown’s My Left Foot and Ruth SienkiewiczMercer and Steven B. Kaplan’s I Raise My Eyes To Say Yes.” Journal of Literary Disability 1 (2): 42–54. ———. 2012. “‘Brilliant, Bright, Boiling Words’: Literary Disability, Language and the Writing Body in the work of Christopher Nolan.” Disability & Society 27 (2): 277–90. Couser, G. Thomas. 1997. Recovering Bodies: Illness, Disability, and Life Writing. Madison: University of Wisconsin Press. ———. 2004. Vulnerable Subjects: Ethics and Life Writing. Ithaca: Cornell University Press. ———. 2005. “Genre Matters: Form, Force, and Filiation.” Life Writing 2 (2): 139–56. Davidson, Michael. 2008. Concerto for the Left Hand: Disability and the Defamiliar Body. Ann Arbor: University of Michigan Press. De Young, Karen. 1988. “Christopher Nolan: Beyond the Limits.” The Washington Post, March 31. Ein Sof Communications. 2018. http://einsofcommunications.com/successstories/miramax-left-foot. Farrelly, Patrick, producer. 1981. Dam-Burst of Dreams. RTÉ Radio One: Documentary on One. https://www.rte.ie/radio1/doconone/2012/0305/ 646957-documentary-podcast-dam-burst-of-dreams-christy-nolan-poetauthor. Fries, Kenny. 2003. Body Remember. Madison: University of Wisconsin Press. Gilmore, Leigh. 2001. The Limits of Autobiography: Trauma and Testimony. Ithaca: Cornell University Press. Goffman, Erving. 1986. Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster. Grimes, William. 2009. “Irish Author Christopher Nolan Dies at 42.” The New York Times, February 24. Hambleton, Georgina Louise. 2007. Christy Brown: The Life that Inspired My Left Foot. Edinburgh: Mainstream.

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Hannah, Jack. 1999. “A Legend in His Own Letters.” The Irish Times, May 8. Jordan, Anthony. 1998. Christy Brown’s Women: A Biography Drawing Upon His Letters: Includes the Founding of Cerebral Palsy Ireland by Robert Collis. Dublin: Westport. Kershner, R. Brandon. 1996. “History as Nightmare: Joyce’s Portrait to Christy Brown.” In Joyce and the Subject of History, edited by Mark Wollaeger, Victor Luftig, and Robert Spoo, 27–46. Ann Arbor: University of Michigan Press. Lane, David. Tales from the Institution: The David Lane Story. Disableddave. blogspot.com. Longmore, Paul. 1990. “The Glorious Rage of Christy Brown.” Disability Studies Quarterly 10 (4): 23–25. Lynch, Claire. 2009. Irish Autobiography: Stories of Self in the Narrative of a Nation. Oxford and Bern: Peter Lang. Nolan, Christopher. 1981. Dam Burst of Dreams. Athens: Ohio State University Press. ———. 1987. Under the Eye of the Clock: The Life Story of Christopher Nolan. New York: St. Martin’s Press. Ojrzynska, ´ Katarzyna. 2019. “‘What’s Your Story, Son?’: Disability and Narrative in Stewart Parker’s Hopdance.” New Hibernia Review 22 (4): 129–42. Parker, Stewart. 2017. Hopdance. Edited by Marilynn Richtarik. Dublin: Lilliput. Pierse, Michael. 2011. Writing Ireland’s Working Class: Dublin After O’Casey. Basingstoke and New York: Palgrave Macmillan. Price, Reynolds. 1994. A Whole New Life: An Illness and a Healing. New York: Athenaeum. Radharc Films. 1962. “Christy Brown: My Left Foot.” https://ifiplayer.ie/ radharc-christy-brown-my-left-foot. Reeve, Christopher. 1999. Still Me. New York: Random House. Richtarik, Marilynn. 2012. Stewart Parker: A Life. Oxford: Oxford University Press. ———. 2017a. “Intimations of Mortality: Stewart Parker’s Hopdance.” Études Irlandaises 42 (1): 93–103. ———. 2017b. “Note on the Text.” In Hopdance, by Stewart Parker, xi–xxi. Dublin: Lilliput. Scarry, Elaine. 1985. The Body in Pain: The Making and Unmaking of the World. New York: Oxford University Press. Schmitt, Arnaud. 2010. “Making the Case for Self-Narration Against Autofiction.” a/b: Auto/Biography Studies 25 (1): 122–37. Siebers, Tobin. 2008. Disability Theory. Ann Arbor: University of Michigan Press.

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Shuttleworth, Russell. 2007. “Introduction to Special Issue: Critical Research and Policy Debates in Disability and Sexuality Studies.” Sexuality Research and Social Policy 4 (1): 1–14. Wallace, Clare. 2018. “‘Starts with the wound’: Stewart Parker’s Hopdance.” Breac: A Digital Journal of Irish Studies. https://breac.nd.edu/articles/startswith-the-wound-stewart-parkers-hopdance.

CHAPTER 5

Disability and Constrained Genres: The Sports and Celebrity Narrative and the Limits of Oral History

All life narratives are in some sense constrained by the models of self and storytelling provided by a culture, even when they achieve the startling originality of language found in Christopher Nolan’s Under the Eye of the Clock or the oppositional moral force of Paddy Doyle’s The God Squad. Yet certain kinds of autobiographical texts appear to be more fully constrained than others. As popular genres, the memoirs of athletes and celebrities with disabilities may find it difficult to resist conventionalized narrative patterns and representations of disability, particularly the depiction of the body itself as one’s primary obstacle and a focus upon the achievements of an exceptional individual rather than the kind of social critique evident in works like Down All the Days, The God Squad, and Out of Sight. Equally constricted by genre and context are the often heavily scripted and edited narratives analyzed by social scientists or circulated in service organization publications. Testimony given to commissions entrusted with the investigation of abuse and neglect is so constrained by the questions asked, the circumstances of testifying, and the limitations of representation as to often prove unsatisfactory as a reconstructive act of self-telling. My questions about such life narratives address those points at which the ideology that shapes those genre constraints comes into friction with the life that struggles to emerge in pages of a book, magazine, Web site, or oral transcription.

© The Author(s) 2020 E. Grubgeld, Disability and Life Writing in Post-Independence Ireland, Literary Disability Studies, https://doi.org/10.1007/978-3-030-37246-0_5

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Disability and the Sports Memoir Disability and sports have a particularly close relationship in that a remarkable number of popular depictions of disability occur within narratives of athletic injury and athletic achievement. The pattern of restitution described by Arthur Frank in the first section of The Wounded Storyteller (1995) proffers compensatory rewards for physical impairment when cure is not possible. The obstacle that must be overcome is one’s own body and mind; the reward is frequently measured similarly: climbing a mountain, winning a race, or becoming a professional dancer. Such stories of embodied difference seek their resolution in a physical feat that outshines the everyday performances of a community that has been identified as normative. Aesthetically, there is a narrative symmetry to this pattern of resolution in which the body solves the problem of the body. But as David Mitchell argued in a foundational essay critiquing the individualism of disability memoirs more generally (2000), these stories also appeal to wide audience because their emphasis on the exceptional achievement of the athlete places the onus for resolution on the individual and allows the reader or viewer (in the case of film and television) a comfortable escape from thinking about the impact of systemic ableism. Canadian scholar and Paralympian Danielle Peers goes further, arguing that an excessive attention to disabled athletes damages those who either cannot or chose not to participate: the pedestal turns the social inequality of disability into something to overcome, rather than something to challenge and change….The heroic Paralympian relies on discourses of the pitiful cripple who can’t overcome and the burdensome gimp who won’t…I realize how these discourses serve to set us apart, whether up on the pedestal or down in the gutter: they enable others not to look us in the eye, they induce us not to look into each other’s and they encourage us not to look inside of ourselves. (Peers 2009, 654)

Similar criticisms could be leveled at the majority of sports autobiographies in that they follow a pattern comparable to conventionalized disability narratives: Singularly talented individuals face obstacles of poverty, discrimination, or injury; they embark on a roller-coaster of wins and losses; and their experience culminates in a competitive triumph in which they leave their troubled origins behind.

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Sports in Ireland do not carry a burden of social signification comparable to sports in some other nations, but there are enough books about Irish sports to allow the Irish Examiner to publish a selection of what they deem as the forty best of their kind, including fifteen autobiographies (“Ireland’s 40” 2014). In contrast, memoirs by Irish disabled athletes are very few, and in all cases, the writers are amateurs. They come to sports of various kinds not only as a source of friendships and adventure but also as a means to express the competitive drive that all identify as their primary character trait. Some of the characteristics of sports autobiography more generally are conspicuously absent, such struggles with team management or coaches, racial discrimination, interactions with the public, and the projection of exaggerated gender roles, particularly heterosexual hypermasculinity. Occupying a central position in these texts, however, is physical pain resulting from the sport, the physical impairment, or both: pain that by necessity, training, or temperament they have learned to suppress until it becomes unsuppressible. That impulse to disregard pain beyond normal expectations proves itself part and parcel of a drive to surpass the norm in almost every area of life. The autobiography of operatic tenor, doctor, and 18-time Paralympic gold medalist Ronan Tynan establishes a personality that thrives on competition: musical, academic, and athletic. Choosing fields of achievement that depend upon physical stamina and individual performance, he relates a history of suppressing symptoms and enduring pain while engaging in activities that were taxing both intellectually and physically. Halfway Home establishes a progressive plotline that moves toward ever-mounting success in one field after another, affirming his brother’s comment that “Ronan has no reverse gear. It’s only forward” (Tynan 2002, 236). Born in 1960 with phocomelia, a genetic condition causing in his case foreshortened lower legs and splayed feet, Tynan attributes his accomplishments to the abiding encouragement of his father, technical improvements in prosthetic devices, divine assistance, and above all, his own optimism and a strength of will inherited from his mother. Tynan’s measurement of success echoes his mother’s ambitions that he be perceived as “normal,” except that his own ambitions drive him to outperform his peers. The family as a whole seems to have lived by their grandfather’s edict that one must “Wear your best coat and hat, and look prosperous, even when you are at your worst” (21). When taken outside as a toddler, he recalls, “I was always bundled up by Mam when we went out, even in good weather. My legs were never shown, I suppose so that

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no one would see a difference between me and any other baby” (18). In a period when disabled children were still routinely institutionalized or hidden away in back rooms as evidence of parental sins (he comments that the unspoken attitude of the community seemed to be “Why don’t you leave the delicate lad at home?”), his mother’s actions manifest her insistence that others perceive her son as no different from themselves, even if her attitude silenced important aspects of his experience. Having lost two other infants, including Ronan’s twin, she made a pact with God that Ronan would walk. She became “fiercer than ever and she squeezed all her will into her living children” (17). In a scene early in the book, she takes young Ronan on a long promenade down Main Street to show the people of the town that he can walk and that the family is “not to be pitied.” He continues, As we walked, everyone gawked, some whispering, and even stepping out of the shops to look at me like hens to feed. I didn’t like the feeling of their eyes one bit. It was as if a dark net were being cast over me. I wanted to break loose of it, but didn’t know how. I was unsteady as a newborn foal on my new limbs, experiencing the still odd mix of freedom and pain that walking brought. The platforms were heavy and my splayed legs meant that I had to use my hips to move, resulting in a none-too-graceful, crooked gait that took a lot out of me. Mam fixed her gaze straight ahead and pulled me along at an unmerciful pace, nodding greetings to anyone who dared make eye contact. (34)

Ronan begins to complain of the pain in his legs and feet, but his mother “marches him onward,” as if in a crusade. When the parish priest bends down to examine him and asks, “Oh, is that the delicate little fellow?” her response is quick and sharp: “None of my children are delicate, Father….And this one will not be little” (34–35). Once in the car, his father chides her and offers Ronan sympathetic looks, but again her response is abrupt and defiant: “They looked at you because they never saw you walk before. And now you have showed them” (35). The sequence ends at home, when Ronan is finally able to remove his prosthetics and discovers that his feet and legs are red and raw with chaffing. Despite portraying his mother as less than compassionate, especially in contrast with his gentle father, Tynan has asserted that his motive for writing the autobiography was to honor her efforts and encourage other mothers to follow her lead: “I want other mothers to read to see the great determination of a woman to make her son walk,” he declared

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to a Globe and Mail reporter. “It was a huge struggle” (Hampson 2005). Yet passages like this one describing the long walk down Main Street carry a recollection of social shame and physical pain that cannot be fully muted by an adult understanding of her motives. For Tynan and his mother, pain was to be borne without complaint in order to resist the belittling impulses of one’s neighbors. The endurance of pain also holds particular meanings for a theology that understands it as a form of spiritual labor. On the one hand, he finds faintly ridiculous his mother’s assertion of a common belief that “God grants rewards for mortifications” and that by driving to the shrine at Knock instead of walking the 170 miles, “we won’t get half the deal” (14). But on the other hand, later in the book, he considers that his good fortune may have come to him as a reward for having “the cross to bear that I did, and…my own sort of pilgrimage in bearing it” (46). When he describes the new rigor and intensity with which he pursued equestrian skills after the death of his grandfather awakened a compulsion to “waste none of my precious time on earth,” he remarks that “Nature has a funny way of making you pay for what you want” (79). Whether his terminology involves God or Nature, in either case Tynan posits a metaphysical exchange of suffering and success, if one can find the way to focus the suffering. Will becomes a way to focus and bear it, and as if seeking a resistant barrier against which his will can test itself, Tynan enrolls as the first disabled student at the National College of Physical Education in Limerick, where, despite his having two amputated legs and requiring prosthesis to walk, no adaptations in performance methods were allowed. Later, he endures long hours of standing during his medical training without requesting (or demanding) any variations in procedures designed for and by different bodies. Despite the suspicions of other interns that he might be avoiding work by asking them for help during night duty when his stumps became unbearably painful, “I never alluded to the fact that I was having problems with my limbs. I needed to complete my residency without drawing too much attention to my disposition” (194). Given the era in which he attended medical college, it seems probable that had Tynan asked for modifications, he would have been denied not only the requested accommodations but the opportunity to study. Yet the real origin of this decision, the memoir suggests, is in his temperament and his upbringing. As a boy, he was subject to blackouts, but “I didn’t like to talk about them for fear I’d be seen as making excuses or asking extra favors” (63). After an attentive teacher creates an athletic event at which

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he would not be disadvantaged by his legs, he overcomes his disappointment at failing to win by a recognition that he “had come in second on merit, without any allowances in the race being made for me” (59). He surprises himself by his willingness to ride horses without his prosthetics because he began to win more competitions without them, and throughout the book, his desire to surpass others in performance turns out to be even greater than his desire to blend in. Tynan’s story is thus shaped around the twin assumptions of much disability representation: the demand that the subject be normal and, at the same time, a demand that the subject be seen as unusual or remarkable. In his Disability and Society: Ideological and Historical Dimensions, Patrick McDonnell explains the problems of normalizing ideologies and practices. Although preferable to the practice of institutionalization, “the ideology of normalisation failed to recognise and acknowledge the importance of difference. In fact, the main objective of normalising practices was the eradication or attenuation of difference,” whereas a disability rights perspective would argue that “the key issues were the recognition of difference rather than its assimilation, the representation of disabled people’s perspectives rather than the exercise of expertise, and the belief that the material as much as the conceptual world was at the root of discrimination and inequality.” Much as Danielle Peers critiques the valorization of the Paralympic hero, McDonnell also argues that, paradoxically, a focus on eradicating difference privileges a few individuals who are able to “negotiate the existing mainstream system,” while further stigmatizing those who are not (McDonnell 2007, 178). Tynan is able to negotiate the system in part because his family had sufficient income for him to travel regularly to London for prosthetic fittings, to have a car and motor scooter, and to try different educational paths and athletic enterprises. His book makes no mention of class privilege or class issues of any sort and is focused squarely on his individual accomplishments and his debt to his parents. Once he becomes involved with adaptive sports, he does experience a sense of camaraderie with other disabled people. Of his week at the 1984 International Games for the Disabled, involving approximately 1700 athletes from around the world, he acknowledges that “it was the first time that I really focused on how hard each of these special athletes had worked to achieve such a high level of mobility and skill in their respective sports. It was no small achievement for these people to earn their place on their national teams under such difficult circumstances. All I can say,” he concludes, “is that

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it opened my eyes” (137). More is gained than a first-place medal in the discus when a crack in his prosthesis at the 1986 championships in Sweden leads to “a question you would only hear at a Paralympics. ‘Could I borrow your foot for the competition? I’ll give it back to you as soon as I finish my throw’” (150). A fine performance leads to a friendship with the Canadian who had readily volunteered his prosthetic foot. Without the self-deprecation concerning his weight, baldness, loud voice, or romantic foibles with which Tynan typically renders a scene humorous, the whole sequence is funny, light-hearted, and joyous. Yet even with the discovery of a sense of community and ease around other disabled people, the sequence finishes by his announcing that he had broken four world records and had been dubbed in the headline of the Swedish daily press, “Ronan the Barbar” (152). For the most part, the remainder of the book follows a pattern familiar to most such memoirs: descriptions of events, accomplishments, and awards in his chosen fields. Tynan is undoubtedly unusual simply in the variety of his enterprises; few individuals excel at prosthetic design and marketing, orthopedic medicine, athletic competition at the highest level, and a career in music that brings international recognition. Throughout it all, though, runs the competitor’s urge to surpass and, in using the body to surpass, to answer what the nondisabled world sees as a singular problem of a singular body.

Constraints of Voice: Editors, Collaborators, and Ghostwriters A reader might expect the autobiography of a man who gained fame as a singer and athlete to have been ghostwritten or heavily edited by a professional writer. But Ronan Tynan explains that he chose to publish his book with Scribner’s for a third of what he was offered by Warner Books in order to maintain his authorship of the text and control over its contents. Having initially taken forty-three pages to a meeting with Warner Books, he was extended a lucrative deal, a ghostwriter, and instructions to include a marketable quotient of misery. Instead, he recalls, he bought novelist Steven King’s instructional memoir, On Writing, taught himself to tell a story, and wrote his own (Hampson 2005). However, the specter of the ghostwriter hovers over memoirs of people who are not by vocation writers and who are well known before their book’s publication. Politicians, media stars, and athletes often employ a ghostwriter, work in collaboration with a professional, or, at the very least, require extensive

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assistance from an editor. Justified or not, doubts about the singularity of authorship also arise when the name on the title page is that of someone with little or no formal education, like Christy Brown, or, like Christopher Nolan, someone whose disabilities seem to preclude the elaborate style of his finished text. By including the name of a collaborator on the title page, a commercially successful memoir like that of Northern Ireland’s world champion water skier Janet Gray invites questions that cannot be easily answered. Unlike many autobiographers, Gray never refers to the act of writing the book we are reading. She is a motivational speaker who has given many addresses to different groups, so some of her life story and observations may have been authored well in advance of the book project. Whether her “friend and co-writer” Lorraine Wiley (Gray 2009, x) composed the text based on conversations with Gray or sections of narrative provided by her, or whether Wiley functioned more as an editor, the resultant book has a more polished style, unified chapters, and less episodic structure than most self-published texts. In her essay on the contemporary sports memoir, Mary McElroy reiterates what is probably a common assumption that “Athletes rely on their physical prowess on the field but usually require assistance in translating their story from the playing field to paper: such co-authored arrangement facilitates the athlete’s communication with the reading public but, consequently, raises doubts concerning the authenticity of the work” (McElroy 1999, 168). McElroy offers no quantitative evidence that athletes are in more need of writing assistance than musicians, actors, politicians, or reality television stars, but her reservations about what she calls authenticity do compel a serious look at the word itself. What do we actually mean by authenticity? Does authenticity in autobiography require that every word has been printed as it was once independently written by the subject of the autobiography? If so, few books could be deemed authentic. Must the story report facts and events accurately, or in the way that the autobiographical subject remembers them or chooses to depict them? Must it embody the intentions of the autobiographical subject and capture his or her characteristic voice? Theorists of autobiography, as well as ethnographers, historians, sociologists, and others, have raised numerous questions about the nature and the ethics of many types of collaborative life writing. Thomas Couser’s

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Vulnerable Subjects: Ethics and Life Writing (2004) offers a helpful distinction between the authorship (understood as the actual labor of writing) and authenticity. His greatest concern is that a collaboration produces a text that is acceptable to its subject, particularly when there is a power differential between the subject of the autobiography and whoever is writing or editing. “The justice of the portrayal,” he argues, “has to do with whether the text represents its subject the way the subject would like to be represented, with whether that portrayal is in the subject’s best interests, with the control the subject has over it, and with the degree and kind of any harm or wrong done by misrepresentation” (Couser 2004, 41–42). However, if these considerations are important to an assessment of authenticity, they would have to be pursued with information beyond that which is in the text. For the reader unacquainted with Janet Gray, very little information of significance is available beyond what her book relates and a few interviews in regional newspapers. We have no means to ascertain if the criteria Couser presents have been met. We also have no means to determine if any internal tensions are due to dual authorship, the constraints of popular genre expectations, or to conflicting feelings within the autobiographical subject herself. Nevertheless, looking at what Katja Lee calls “productive sites of friction,” the “exposed seams” in what strives to be the seamless garment published under a “double signature,” may bring to light some significant contrasts in how disability is narrated and understood in an Irish context (Lee 2014, 1257). Janet Gray’s Blind Ambition was published in 2009 by Gill and Macmillan and has appeared in paperback under two distinct covers and as an MP3 recording produced by the Royal Institute of the Blind. The memoir begins in her childhood and traces the onset of hereditary blindness in her father, herself, and her younger brother. It recounts her early years of marriage, her involvement in water sports, and her competitive triumphs. Approximately half the book concerns a serious accident that occurred in Florida during training and her efforts to regain mobility; it concludes with her return to her sport. Gray was a public figure long before her book appeared, and it is occasioned by her local celebrity as a world champion athlete and her substantial efforts on behalf of other disabled athletes. Before its publication, she had been selected Northern Ireland’s Woman of the Year and Northern Ireland Sports Personality of the Year four times, as well as having been made a Member of the British Empire in 2002. Her accident in 2004 received extensive coverage in the regional press, and later that year she was awarded an honorary doctorate

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from Queen’s University. Gray is an athlete rather than a writer, and the presence of a co-author and the book’s publication by a popular trade press suggest that whatever Janet Gray’s inclination as a storyteller, certain aspects of the story may have been emphasized in order to market the book to the audience that Gray’s status would anticipate. As in so many disability memoirs, the paratextual materials repeat adjectives such as exceptional, inspiring, remarkable, and special, while the book is presented as a tale of astonishing and unique achievement. Like Tynan, Gray appropriates the militaristic and athletic metaphors of popular discourse, although in reality neither amputation nor blindness can be battled or conquered. In this and other ways, much of Blind Ambition is highly conventionalized. Summaries of public events unrelated to the story are interspersed with more personal narrative; having no organic connection to the story, the passages function as no more than a genre convention, and one that appears also in Wiley’s biographies. Even the title, replicating that of the 2005 BBC documentary about Gray, employs the idiomatic punning common to popular memoirs of people with disabilities, and at least three other memoirs of sight loss have been published with the same title. Of more serious consequence, any references to class or to politics are carefully avoided in what is marketed as an inspirational text. Both Gray and her co-author, Lorraine Wiley, are evangelicals and associated with Unionist politics; Gray grew up attending Sinclair Seamen’s Presbyterian Church, a gathering point of hard-line Ulster Unionism since the Home Rule movement in the late 1800s, and she has friends and relatives among the followers of the Protestant firebrand Ian Paisley. She was a teen and young woman during the worst years of the Troubles, but while she often mentions her love of shopping, she says nothing about the barricades, checkpoints, metal detectors, and guards around stores in the city center. Her omission of any reference to the civil war, except to note the IRA ceasefire among the many good things of 1994, may be attributable to her sense of herself as a public figure of significance to her province rather than only the Protestant community. But the fact that the issue is not addressed at all reveals that the narrative of her life is, again, constrained by genre. Gray’s autobiography, like Tynan’s, exhibits the traits of midto-late twentieth-century celebrity autobiography in Ireland described by Andrew P. McIntyre and Diane Negra. These texts, they argue, repeatedly stress “the subject’s affiliation (however qualified and problematic) with stable or even fixed institutional and national categories” in order to “hold

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in place the stabilizing power of institutions” (McIntyre and Negra 2018, 377). Emphasizing love of place and traditional aspects of culture such as religious piety, such texts avoid confronting the systemic fractures in their societies and thus also avoid the kind of rich social context that would give greater depth to the portrayal of an individual life. Other conventions of popular narratives of disability and sports are less jarring in the context of Gray’s experience. While the heavy use of foreshadowing, for example, may be no more than an imitation of stories Gray had read or the literary intervention by her co-author, the terminology of providence and fate exhibits the overtly Calvinist theology of the Irish Presbyterianism in which she was raised. To foreshadow events is to inscribe them with order rather than imagine oneself as the passive victim of utterly unpredictable and random events. Repeated references to the onset of “a curtain of inky blackness,” “utter darkness,” “never-ending night,” “the black hole of glaucoma” and other such terms that express the sighted world’s notion of blindness capture a period of time more like the long, dragging days of a hurricane’s inevitable approach than the sudden development of a tornado. She asserts that watching her father and brother lose their sight and waiting for the deterioration of her own felt as if curtains were falling or she were falling, agonizingly slowly, into another world. After mobility training, however, these words themselves fall away and are replaced by a sense of adventure . Blind Ambition is most interesting when the text wars with its own conventions. The competitive trait that marks most biographies and autobiographies of athletes is balanced here with an articulation of other reasons why a blind woman might suddenly take up championship water skiing. She does write that her success at the Northern League inter-club competition provoked “a taste for winning.” “On reflection,” she continues, “I can trace the origins of my competitiveness to that day when, instead of making tea, I sliced my way through the waters of Lough Henney at Boardmills and found a purpose and direction for my life” (49). However, she speaks also of the welcome companionship of with other people with vision impairments, the “level playing field” of racing with other blind athletes, and the rush and exhilaration of vigorous activity. Even Ronan Tynan’s unvarying attention to the pleasures of winning races also articulates that sensation when one’s body—socially stigmatized and often a source of pain—also provides joy through its own physical action: “When I ride,” he observes, “the horse and I become one. I feel the animal’s power under me and am transformed….I gain speed, nobility,

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beauty, and freedom” (Tynan 2002, 79–80). In both instances, individual achievement may be the dominant note, but also we hear of the delight produced by friendships with other similarly disabled people and by the discovery of the strength and beauty of one’s own body. A second comparison with Tynan’s book proves another insight into this issue. We might recall that key moment in Halfway Home when Tynan decides that his initial embarrassment at riding horses without his prosthetic legs can be shrugged off in consideration of how well the horses perform without the extra weight of the prosthetics. The desire to not stand out is superseded by the athlete’s desire to do so in a competition. Although that particular scenario is not echoed in Blind Ambition, Gray’s ambition to be a champion athlete in a sport designated for those with sight loss supersedes her desire to simply be accepted as an ordinary middle-class wife interested in fashion and homemaking who just happens to be blind. The book’s effort to insist on sameness is contradicted by its subject’s achievement and subsequent celebrity. If, as Rosemarie Garland Thomson claims, “disability is the unorthodox made flesh, refusing to be normalized, neutralized, or homogenized” (Garland Thomson 1997, 24), the textual manifestation of difference emerges despite genre conventions and marketing concerns. Like Halfway Home, Blind Ambition presents the wish to “overcome” a physical impairment in order to gain a life which is both “normal” and of such unusual achievement that she becomes a recognized and muchlauded public figure. But unlike Tynan, Gray devotes a good deal of the autobiography to presenting the daily life of a blind woman and her growing involvement in disability organizations. Gray discovers an identity and “sense of purpose” through her involvement in Northern Ireland Blind Sports and other athletic groups. She refers appreciatively to the new companionship and “unconditional acceptance” she experiences among other blind people, unlike the years when she had “struggled so hard to maintain a semblance of normality and tried desperately to fit in with my contemporaries” (52). Although the book lacks the social analysis of those memoirs of sight loss discussed in the second chapter of this book, much of its contribution comes from its inscription of the everyday, from cooking and keeping house as a blind woman to her enthusiastic embrace of a career contingent upon her disability. It exhibits a tension among three ways of understanding disability: as abnormality, as creating its own normality, or as requiring that an individual be superior in some way. But

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these contradictions may also represent a personality that is athletic, individualist, and competitive but which also desires mutual understanding and mutual assistance. While the book is textually overbalanced toward the former set of traits, Gray yet emerges as a more complex personality than she might seem. Halfway through the text, Gray relates the story of the training accident which sidelined her with massive injuries throughout her body. The book changes direction at this point, only to take up its recital of athletic conquests at the end when, after three years of rehabilitation and against all odds, she recovers sufficiently to once again get into her wetsuit and onto her skis. The pace slows to match the multitude of her injuries and the dozens of surgeries required, as well as the slowness of her return to speech after her face was reconstructed with eight plates, thirty-seven screws, wires, and coral implants.1 Without addressing the systemic problems of the insurance industry, she makes sure her reader understands that, despite her homesickness for Northern Ireland, there is only one reason why a woman in her precarious condition would be taken from intensive care shortly after major surgeries and put on a transatlantic commercial flight to London and Belfast. Her private insurance and that of the skiing training center determined, in marked disagreement with her medical team in Florida, that she must return to a place where some other entity, in this case, the National Health Service, would pay for the remainder of her treatment. The trip itself is a debacle, as the Tampa airport and the airline either disregard or reverse the careful arrangements that had been organized for her transportation. The episode constitutes one of the few occasions on which this resolutely cheerful book allows itself to express outrage.2 The militaristic metaphors of battle, defeat, and conquest return in the context of the onslaught of pain. She labors diligently in physical therapy to regain mobility and, with considerable difficulty, walks to the stage on crutches to receive an honorary doctorate instead of using the wheelchair that she despises. Yet such metaphors are again incompatible, as one can make efforts in physical therapy and work to stave off emotions such as despair, fear, and indifference, but one cannot by sheer willpower defeat injuries to bones and tissues.3 She presents the desire to perform a socially constructed normality as if it were on a par with her urgent desire to wash her hair while in the ICU or be sufficiently made up that the BBC cameras will not pick up the extensive scarring on her face during the filming of

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a documentary about her. And of more consequence, she presents that desire as if it were a cure for physical impairment. In her epilogue, Gray articulates the fundamental contradiction of her life narrative. Speaking of the “umpteen illustrious titles I’ve managed to collect along the way,” she asserts that I think my favourite is still the simplest and perhaps most recognized: Janet Gray. The others may speak of honour and achievement but it is my name that denotes my identity. I am Janet, who, as a young girl, stumbled into a word of darkness. While I never returned to the sighted community, I pushed and fought my way back into its society. Not satisfied with remaining on the fringes, I decided to climb to the top, carving a niche in history and leaving others a trail of encouragement. My chosen tool was sport. (211)

To be just Janet is, paradoxically, not to be the anonymous private person, the wife, the woman who does not stand out as different. It is instead to embrace difference in the sense that to be Janet is to “climb to the top,” and yet, at the same time, to perform a normality that is refuted by difference.

Dorine Reihill’s Going Home Dorine Reihill’s memoir, Going Home: A Story of Survival (1987), also describes a horrific accident and, in addition, permanent disablement rather than the recovery that allows Janet Gray to resume her water sports. Reihill displays many characteristics of what I have called the athlete’s temperament: a powerful competitive impulse, a resistance to the expression of pain, and an identity integrally tied to rigorous physical action. Her sport, however, was not the kind that brings medals or fame. Until her accident, she was an accomplished amateur equestrian, enjoying the traditional fox hunt and competing in local horse shows. She grew up in a family whose “lives revolved around horses” and was, with her five brothers, self-confessedly “horse-mad” (Reihill 1987, 6). But she was not a public figure, and her book is not subject to the constraints under which the autobiographies of celebrities and athletes tend to operate. She never had a reason to feel, as did Janet Gray, that she was carrying a flag for her community. An experienced writer of fiction and journalism, Reihill is also unlikely to have required a professional collaborator, and the book shows

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nothing of the stock literary gestures or the divided voice of Blind Ambition. The contrast between the two provides insight into very different narrative paths that the story of disability might take. “It was,” writes Anglo-Irish novelist Elizabeth Bowen, her mother’s “great wish…that I should not be muffish” (Bowen 1942, 406), and to avoid that epithet one was trained to persist through unutterable fear or pain, to ride large and terrifying horses in any weather, and to avoid sentimentality at all costs. Dorine Reihill was not, like Bowen, an inheritor of the old Protestant landed class. Nevertheless, she too was schooled since childhood to disdain any traces of muffishness. Just as Ronan Tynan, after fracturing his pelvis and four lumbar vertebra while practicing jumps, worries less about his injuries than the disappointing unlikelihood of riding in the upcoming Dublin Horse Show, so Reihill’s first words to her family doctor after regaining consciousness are “Will I be able to hunt again this season?” (Reihill 1987, 26). She recounts her response after being rushed to the emergency unit and told that her expensive new leather riding boots must be cut off due to the damage to her legs; a tender-hearted nurse asks her if she is afraid, and she recalls, “I said with what I hoped was a certain measure of disdain, ‘Certainly not! Hunting people don’t get frightened’” (20). Married into a family of great wealth and prestige, she was a publishing writer in an era when a woman of her class might hesitate to acknowledge literary interests of her own; she raised, trained, and rode horses at hunts and at major horse shows; and she suffered extraordinary injuries when after a long day of riding in the cold October rain she was caught between a car and horse trailer and dragged against the tarmac for almost a mile in the darkness.4 Throughout the ordeal and until she was sedated late that night, she never lost consciousness. Dorine Reihill never rides again. Her story does not follow the narrative arc that Arthur Frank calls a “restitution” narrative in which the ill or disabled subject is brought to recovery or some sort of compensation. At the conclusion of her book, she walks with mobility aids, she deals everyday with severe pain, she writes, and she lives. Although the back cover predictably attributes her endurance to “her unconquerable will to survive” which “never wavered,” the text tells a different story. Periods of depression and suicidal thoughts do occur during the 296 days she initially spent in hospital and in the ongoing years of infections, surgeries, and chronic pain. She says next to nothing about her “will” or other attributes of character except a degree of obstinacy and a tendency to

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crack jokes in the most terrible circumstances, even about suicide: dismissing the idea of drowning in her pool, for instance, because “apparently people look awful if they die from drowning and I want to look a nice corpse” (62). Instead, she attributes her ability to finally leave the hospital to the doctors, nurses, and physical therapists who saved her life, her good friends who sat with her during the long months, and the staff who managed the large house and cared for her children during her hospitalization and even after her return home, when she often could not face social interactions or sought to hide her sadness from her children. If cliché phrasings about will power are absent from all but the back cover blub, metaphors of pain are also missing from the text. Instead, she conveys pain through precise descriptions of its causes and context. For example, her dread of receiving yet more injections leads her to ignore an intense pain in her left side; the pain intensifies until “Saturday night I was hardly able to speak or breathe.” After her senior physician is urgently summoned, he tells her she has a “‘touch’ of pleurisy,” a statement belied by the sudden presence of the full staff of nurses, her private nurse who has also been summoned, and a specialist in inserting difficult venous drips. As nearly all her veins had collapsed, an emergency insertion of an anti-coagulant drip to save her from a pulmonary embolism must be given through the jugular and without anesthetics while she is forcibly restrained. After the anti-coagulant drip causes a hemorrhage in her injured hip, she recalls that “I was so ill I couldn’t even feel strong enough to will myself to die” (44–45). No metaphors are needed for the reader to visualize and imagine the paradoxically conjoined experience of acute pain and exhaustion so great that it swallows up desire, even the desire to die. She produces a text that draws upon a medical approach to her body and what medical personnel later tell her about the episode, but rather than being at the mercy of either banal metaphor or medical discourse, the story materializes through her subjective memory and her characteristic mordant humor. Because Reihill stays away from military metaphors of battle, defeat, and conquest, she can create a narrative in which she need not win, as much as she has loved to win in the past. As has been often argued in the wake of Susan Sontag’s Illness as Metaphor (1978), militaristic metaphors of illness and disability can produce assumptions of moral failing when the “fight” is lost; in consequence a story that depends upon restitution collapses when the goals desired (cure, sight, hearing, walking, or whatever else an individual or others have set as a goal) cannot be met.

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And that collapse sometimes leads to a void in a narrative of the self. In their studies of British male athletes who underwent paralyzing damage to the spinal cord, Brett Smith and Andrew C. Sparkes note repeatedly the pernicious effect of holding to the restitution story as a shaping narrative. In the case of so many disabilities, one may become stronger or healthier through exercise, diet, or medicine, but rarely can underlying impairment be reversed. Smith and Sparkes transcribe the circular repetitions of one man’s agonizing articulation of hopelessness after the demise of his conviction that he (identified by the pseudonym “Jamie”) would defeat his paralysis and again move independently and even play rugby. They observe that in place of his “failed restitution narrative,” metaphors of battle have become metaphors of choking, suffocating, crumbling, and shattering. “In this movement,” they conclude, “Jamie’s previous narrative dissolves and his psycho-emotional wellbeing is battered. His world is unmade, reduced to nothing. Thus, not surprisingly, his self and identities are fragmented as their narrative structures break apart to the point where life is deemed to be meaningless and devoid of purpose and hope” (Smith and Sparkes 2008, 224).5 While not rendered abject through the failure of metaphors of battle, Dorine Reihill acknowledges in the final sentences of Going Home that more operations and more pain are in the future. She extends a hope, rather than a resolute conviction, that “with the advances of modern medicine one day in the future I shall once again be just an ordinary housewife,” although as a writer, socialite, equestrian, and world traveler, she was never ordinary. That final sentence may need to be delivered with her characteristic wink. Following this conclusion, she offers a whimsical epilogue inspired by a long alphabetical list of medical problems she was asked to devise in case of an emergency. The “Alphabetical Index for this book” some of which are somber, such as Nights (“They seem endless with my insomnia and nightmares”) and others which simply speak for themselves: an Epitaph (“Rest in Pieces”), Teenagers (“with the IKnow-It-All attitude” that “makes me feel that I really have made it as a ‘normal’ mother”), and Guinness (her nutritional source when she could not hold down other foods, much to her abstemious physician’s distress). The longest, most detailed entries, as the reader might expect, are those on Pain and, longest of all—Horses (85–92). Narratives are indeed, as Sparkes and Smith claim, “identity performances” in which writers or speakers create coherence by emplotting the details of experience in such a way that their identity is affirmed (Sparkes

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and Smith 2007, 681). Public figures like Ronan Tynan and Janet Gray accord their autobiographical identity with the public role to which each has successfully aspired. Their memoirs are thus necessarily constrained by the role and by the tradition of self-narrating that has been associated with the role. At the same time, each successfully conveys aspects of its subject’s character. The tensions within each book actually lay open some of the key contradictions in the experience of disability and in writing about it. Less encumbered by a public role, Dorine Reihill is more fully able to articulate a sense of both physical and psychological pain; yet because the trauma of her accident and her ongoing disablement are met with the very traits she identifies with her early training in horsemanship—that characteristic lack of “muffishness”—she also produces a narrative that looks at the world with a stringent wit, a sense of irony, and an exacting attention to detail. But what is particularly Irish about these texts? In the first chapter of this book, I identified disability life writing in Ireland as a distinctly national genre in its attention to cultural and geographic insularity, the hegemonic force of institutions, especially that of the Catholic Church in Ireland, and the interrelationship of disability and class. Because all three writers had access to therapeutic, professional, and recreational travel, none of them was confined geographically and all had exposure to other cultures. Going Home even opens with a scene in which, accompanying her husband on a business trip to Japan, Reihill successfully delivers a speech in Japanese. Janet Gray’s sense of relief upon hearing Belfast accents on her return from Florida is less the expression of cultural insularity than love of home. As these writers were neither removed from their families nor otherwise directly subjected to religious authoritarianism, religion plays less of an institutional role and more of a theological one, observable in Ronan Tynan’s sense that impairment and pain could have spiritual value, and in the teleological understanding of providence that is part of Janet Gray’s Calvinism. Dorine Reihill was a practicing Catholic, but she acknowledges that while others advised her to pray and offered their prayers, her religion was not of much significance during her ordeal except to distress her when nausea prohibited the taking of communion. Unlike almost every text so far considered, these three books say nothing about class, and yet those differences I have just described are primarily attributable to class status. All three writers were of at least middleclass background and had no contact with residential institutions or state

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interference with private life. They could afford travel, recreation, medical treatment and equipment, and, in the case of Dorine Reihill, roundthe-clock private nurses both in hospital and at home. Their very silence speaks to a class privilege that fails to recognize itself, and only in that sense does their work address questions of class. As I go on to discuss the brief oral histories given in organizational publications or sociological studies, and most especially in the case of testimonies before evidentiary committees, questions of class, economic and cultural insularity, and the institutional force of religion surface once again.

Other Constrained Genres: Oral History and the Testimony The autobiographies of the celebrity or athlete often struggle within the constraints of an ethos of competitive individualism and their recognition of a civic role, and other public forms of autobiography expose the limits of their genres as well. The oral history as collected by a service organization tends to highlight desirable facets of that organization, and the excerpts from life narratives that appear in academic research often lack context. Testimony collected as part of an inquiry into inadequate or abusive conditions can leave witnesses feeling violated rather than restored by the act of recounting life experience due to problems in the circumstances of its collection, its appearance as text, or its effect—or lack of effect—in achieving the ends for which such difficult utterances were made. The histories of individuals that appear in anthologies or Web sites developed by advocacy organizations frequently echo the interests of those who compile the stories and ask the leading questions. Encompassing long passages of direct quotation and flattering photographic portraits, Extraordinary Lives: Celebrating 50 Years of the Irish Wheelchair Association, for example, presents upbeat life stories that reflect the athletic and social goals of the organization. Although the majority of people profiled in the collection have participated in competitive athletics, including the Paralympics, these portraits are not focused on the idea of a competitive personality. Neither are the stories uniformly structured around the survival of crises related to injury or disappointment in one’s performance, or the accumulation of achievements and accolades. Many of them tell of the progress toward self-sufficiency after institutionalization, living with parents, or in group accommodations like the Cheshire

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Homes. Some of the stories capture indispensable pictures of how disability affected people of limited means, as in the case of an elderly woman from rural County Mayo who developed MS in the late 1950s. Without any support services and unable to afford a wheelchair, she maintained a small house without heat or stove and raised six children from her seat at the kitchen table (Marsden 2010, 50). She expresses regret only that her children were unable to participate in after-school activities because she needed their help in the home. Her story and that of others portrayed in the volume tell of personal growth, physical improvement through athletics, and the pioneering activist accomplishments of the organization. However, the sketches also have their own narrow field of focus; purposefully affirmative, they concentrate primarily on the experience of achieving independence from the parental home or institutional care and involvement in IWA activities. With just a few dissenting utterances, like a young man who speaks of the loneliness he feels in his own bungalow after living first with his mother and then eight years in clustered living units built by the IWA, the narratives exist to support the independent living ideals of the organization and celebrate its successes. The experiences and information within the volume offer insight into the experience of living with mobility impairments from mid-century through the early 2000s and will be of great value to a history of the disability rights movement in Ireland, but the life stories and the realization of the individual personalities presented by each portrait are constrained by the project’s larger goals. Janet Tubridy’s collection of interviews with thirty disabled people in Ireland, Pegged Down: Experiences of People in Ireland with Significant Physical Disabilities (1997), organizes its material around topics such as education, income, marriage, and religion. The life histories and reminiscences of those she interviewed appear in short quotations that provide evidence for discussion of each topic. The book serves as a good source of information about Irish attitudes toward disability and the everyday experiences of disabled people in Ireland during the late twentieth century. Tubridy quotes, rather than summarizes, what she was told, so the stories and perspectives of her interviewees appear in their own voices. As with most such studies, however, their experiences elucidate each topic while never giving a sense of the whole person speaking. The authority to interpret what is said and produce a narrative remains with the researcher, not the subject. It may have been impossible to reproduce as an appendix the full text of each interview, but doing so would have allowed a life

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story shaped by the speakers themselves and representing a more holistic self-narrative. Although the study of the self-narratives of former Rugby players referenced earlier in the discussion of militaristic metaphor takes place in England rather than Ireland, the questions raised by researchers Smith and Sparkes are relevant to this discussion. Smith and Sparkes use Jamie’s story to argue for the necessity of listening to people’s experience of despair and, by listening, potentially help them turn the story toward “counter-narratives that provide alternative maps and different emplotments regarding disability and impairment that enable different body-self relationships to emerge” (2008, 232). This motive is far from exploitative or harmful to Jamie, and potentially helpful to many others. The reader can assume that Jamie gave informed consent. But we have no way of knowing if Jamie did or would have approved this portrait of himself, or whether it encapsulates his full experience of quadriplegia. Thomas Couser has argued at length for “the inclusion in collaborative narratives of accounts of the transactions and negotiations that produced them— what Paul John Eakin calls ‘the story of the story’” (Couser 2004, 25). Sparkes directly addresses some of these issues in a later essay exploring his inability to complete an auto-ethnographic project concerning his father’s dementia. In the process, he carefully outlines the research ethics by which he guided his earlier investigations into illness and disability, but he is still troubled by the problem that “we run the risk of making those we write about not only recognisable to others but recognisable to themselves in ways they might not feel comfortable with or agree to even if they have given their informed consent (whatever this might mean) for the story to be told” (Sparkes 2013, 207). Jamie’s words describe himself as a figure of pathos in their study. Were he to read it, would this representation be therapeutic in terms of self-recognition or damaging in terms of enforcing a sense of worthlessness? Splintering of the voice and diminishment of narrative agency appear more endemic to those self-referential stories that are elicited by lawyers or as part of an inquiry commission.6 As explained in Chapter 3 of this book, the Commission to Inquire into Child Abuse (known as the Ryan Commission) took evidence from many former residents of institutions for children, including eighty-nine individuals who had lived in residential hospitals and schools for the Deaf or blind, as well as other disabled people housed in industrial schools and other such institutions (Commission 2009). The fundamental problems with such narrations are perhaps

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best articulated by a man who is not disabled but who had been sentenced to St. Joseph’s Industrial School (known as Ferryhouse) after the death of his mother. The problems he identifies parallel those who testified about neglect and abuse in eighteen different hospitals or training schools for sensory disabilities. During a 2009 broadcast of the RTÉ television show, “Questions and Answers,” former Clonmel mayor and councilman Michael O’Brien made an impassioned statement regarding the inadequacies of the Ryan Commission and its results. His statement was widely discussed in the news media and is readily viewable on YouTube and other video platforms. His reaction to the process of giving evidence to the Commission may serve to elucidate the limitations of such testimony not only as a form of social action but also as a form of life narrative. His objections address some of the major problems in the way evidence of institutional abuse was collected, as well as the fundamental differences between life narratives constrained by the testimonial situation and those narratives in which the writer has greater agency. As is evident from his strong emotions and the recursive, at times elliptical nature of his expression, the repeated rapes and beatings he recounts are relived each time they are retold; they are retold because his testimony has not been properly heard or answered. He desires his listeners to feel within themselves some inkling of what he endured and continues to endure as his experiences are replayed in memory and etched in narrative; he demands that his listeners be those he accuses and that they and the state must take responsibility rather than offering a “mealy mouthed apology.” Shaking with anguish and rage, frequently interrupting his own sentences and shifting between past and present events, he protests both the inadequate response of the state and the presence of those he accuses, a man brought “over from Rome, ninety odd years of age, to tell me I was telling lies.” “You made a bags of it,” he declares to politician Noel Dempsey, “You made a complete bags of it…You didn’t do it right, you got it wrong” (Carroll 2009).7 Clearly, the structure of evidence-gathering, the presentation of the evidence, and the limited outcomes available frustrated the motives for which witnesses, many for the first times in their lives, spoke about events that left them badly scarred. The witnesses themselves address the desire to be heard and believed. They hope by their testimony both to help others like them and to gain some release from problems such as panic attacks, chronic fear, inability to show affection or keep a job, alcoholism,

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drug abuse, depression, suicidal thoughts, and shame: all symptoms familiar to students of trauma (Commission 2009, 2.4–2.49). What do we learn from O’Brien’s televised condemnation of the process? Everything about it reflects what psychologist Eija Harjula calls “a strange, silent language that speaks in between the words and sentences, [that] changes the rhythm of speech, makes one lose words, suddenly tears a hole in speech” (Harjula 2002, 200). This “silent language” and the “hole torn in speech” underscore the fundamental unsayability of trauma: A discourse of the body speaks instead. The sweats and nightmares he describes are a wordless narrative repetition of the experience of rape and beatings. The circularity, interruption, and the breaking voice in his description of that repetition itself repeats the trauma. Each time he speaks, he relives the nightmares and the trauma of retelling the story of both the original event and the nightmares that followed, and each time the experience builds accumulatively. He has allowed himself to be cross-examined and refuted by the ninety-year old man because telling the story is insufficient to his needs and even counterproductive. He wants acknowledgment that his repetitions have a source outside of himself, and he wants those who are responsible to make that acknowledgment and respond with action. His appearance before the investigative branch of the commission indicates his desire for specific outcomes such as acknowledgment of responsibility, reparations, and criminal prosecutions. Those who testified before the confidential committee were not subjected to cross-examination and refutation but neither would their testimonies lead toward any actions. Its stated primary purpose—To provide a forum—implies a belief that telling a story has some value in and of itself.8 The Commission did make “a bags of it” in its naïve aspiration that the confidential forum would release people from their stories by telling those stories. Beyond the inherent problems in traumatic repetitions without redress, the structure of the report itself undercuts any hopes of establishing voice, causality, and narrative coherence. In the transcriptions of testimony released to the public, no names are given, no acts are described (ellipses are placed in substitution), events are divorced from the rest of the speaker’s life story, and the speaker remains in abject position as a being to whom things were done. As a document of autobiography, the report exposes one after another of Ernst Van Alphen’s characterizations of unsuccessful traumatic narratives: Subjectivity is muted or erased; the stories lack of a plot or framing by which events could be related with meaningful coherence; and the plots or narrative frames which enclose them fail to do justice to the

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recalled event or the circumstances of its recollection and narration (Van Alphen 1997, 41–64). The therapeutic myth of recovery through testimony does not serve those needs, and it has been suggested more than once that the Irish public is tired of the story, suspicious of the payments made through the redress schemes, and ready to “change the channel.” Like information gleaned from interviews in less traumatic contexts, these textual representations of life experience lack their own narrative structure and fail to express more than particular facts related to the topic of inquiry. This problem is not so much a literary one as a psychological dilemma with lived consequences. Dori Laub writes of a survivor of the Jewish Holocaust who became most animated when describing those moments and events in which victims defied authority with small gestures of bravery or kindness, even if those gestures were terribly compromised by the situation in which they found themselves (Laub 1991, 62). These types of stories are entirely missing from the Ryan report and other such documents. In an effort to protect the privacy of those individuals who spoke and those against whom allegations were made, the commission focused on the deeds of perpetrators in isolation from the lives of those who were on the receiving end and contained within its mandate little means to pursue the perpetrators. In the report’s decontextualized format—devoid of name, history, reflection, and particularly devoid of any stories of active or psychic resistance—these testimonies cannot speak beyond the point of abjection. And thus they leave the speakers as abused bodies without agency, voice, or answer. From the autobiography of a world-famous singer to a collection of biographical and autobiographical portraits of the energetic activists of the Irish Wheelchair Association and the Ryan Commission’s fragmented accounts of the recollections of child abuse survivors, genres under the pressure of many different kinds of constraints confine a life narrative within those strictures and yet also give enough room to express the extraordinary variety of disability experience within Ireland and Northern Ireland .

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Notes 1. Despite the severity of Gray’s injuries, this section of the book also relates humorous episodes in the hospital: a feature of every memoir of long-term hospitalization I have read. Perhaps hospital life is so different from life outside as to continually manifest the incongruities fundamental to humor. The impulse to rebel against its regulations and protocols also seems ubiquitous and is the source of much hospital humor. I have not observed this feature in the memoirs of people who spent childhoods in residential hospitals or long-term care. The authority of the hospital may be so great in the child’s mind that rebellion is unthinkable, and the absurd incongruities noticeable to adults do not register as such for the child. 2. Lawsuits against both the training company and its insurance provider were settled in 2011 and 2012. To the Belfast Telegraph she commented, “You’ll hear of a $3.5m (£2.18m) judgment being mentioned, but I only received a mere fraction of that…My costs were horrendous. Although I’d paid for my insurance, I had to pay back all my medical expenses, the legal cover and everything so there was very little left.” She adds, “The ski school abandoned me because of the legal implications … I think that hurt me more than anything, to feel that my coach and the people that I trusted had abandoned me when the chips were down” (McNeilly 2012). 3. See Chapter 1 for a discussion of both the power and the problems of metaphors of disability; Chapter 2 also treats this issue in the context of vision impairment. 4. Before her marriage, she wrote (as Dorine Rohan) a pioneering study of Irish Catholic attitudes toward sex. Marriage Irish Style, published in 1969 by Cork’s respected Mercier Press, is not an academic sociological study, but it is frequently cited in academic and journalistic discussions of the topic. The book reproduces the remarkably candid answers she received to interview questions about sexual knowledge and experience. I have been unable to discover why or under what auspices she undertook to write a book so unusual for its time. That she would ask such questions and write such a book says a great deal about her audacity and courage. 5. An earlier article based on the same data set focuses specifically on metaphors of sport and battle as self-descriptive language but also discusses what they term to be more productive metaphors of travel and rebirth, metaphors which may also include instances of barriers and misdirection. See Smith and Sparkes (2004). 6. The Industrial Memories Project headed by Emilie Pine is engaged in making the Ryan Report more readable through digital indexing that will allow for tracing the actions of particular individuals and institutions. The project is creating an oral archive so that survivors may tell their stories in full. Those stories will be made public as whole narratives. See Pine et al. (2017)

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and the Industrial Memories Project site at https://industrialmemories. ucd.ie/. 7. O’Brien’s remarks have been transcribed (Carroll 2009) and can be viewed on numerous You Tube sites. 8. As explained in Chapter 3, the Confidential Committee and the Investigation Committee were two distinct entities: The first provided a confidential forum and made general recommendations, while the latter was charged with investigation of specific allegations and included cross-examination and compulsory attendance.

References Bowen, Elizabeth. 1942. Bowen’s Court. New York: Alfred A. Knopf. Carroll, Steven. 2009. “Ex-Mayor Tells of Abuse by Order.” Irish Times, May 27. https://www.irishtimes.com/news/ex-mayor-tells-of-abuseby-order-1.771258. Commission to Inquire into Child Abuse. 2009. Final Report. http://www. childabusecommission.ie/rpt. Couser, Thomas. 2004. Vulnerable Subjects: Ethics and Life Writing. Ithaca: Cornell University Press. Garland Thomson, Rosemarie. 1997. Extraordinary Bodies: Figuring Disability in American Culture and Literature. New York: Columbia University Press. Gray, Janet, and Lorraine Wiley. 2009. Blind Ambition. Dublin: Gill and Macmillan. Frank, Arthur. 1995. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press. Hampson, Sarah. 2005. “I Can’t Tell You. You’re Killing Me!” Globe and Mail, April 16. https://www.theglobeandmail.com/arts/i-cant-tell-youyoure-killing-me/article978900. Harjula, Eijan, 2002. “Trauma Lives in Speech: The Rhythm of Speech Breaks, Word Disappear, A Hole Is Torn in Speech.” Translated by Timo Heiskanen. International Forum of Psychoanalysis 11 (3): 198–201. Industrial Memories. https://industrialmemories.ucd.ie/project. “Ireland’s 40 Greatest Sports Books.” 2014. Irish Examiner, December 2. https://www.irishexaminer.com/sport/other-sports/irelands-40-greatestsports-books-300376.html. Laub, Dori. 1991. “Bearing Witness or the Vicissitudes of Listening.” In Testimony: Crises of Witnessing in Literature, Psychoanalysis and History, edited by Shoshana Felman and Dori Laub, 57–74. London and New York: Routledge. Lee, Katja. 2014. “Not Just Ghost Stories: Alternate Practices for Reading Coauthored Celebrity Memoirs.” Journal of Popular Culture 46 (6): 1256–70.

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Marsden, Joanna. 2010. Extraordinary Lives: Celebrating 50 Years of the Irish Wheelchair Association. Dublin: Dyflin. McDonnell, Patrick. 2007. Disability and Society: Ideological and Historical Dimensions. Dublin: Blackhall. McElroy, Mary. 1999. “Athletes Displaying Their Lives: The Emergence of the Contemporary Sports Autobiography.” In The Achievement of American Sport Literature: A Critical Appraisal, edited by Wiley Lee Umphlett, 165–83. Rutherford, MA: Farleigh Dickinson University Press. McIntyre, Anthony P., and Diane Negra. 2018. “Irish Celebrity Autobiography.” In The History of Irish Autobiography, edited by Liam Harte. 363–78. Cambridge: Cambridge University Press. McNeilly, Claire. 2012. “Blind Water Skier Settles Massive Lawsuit over Horrific Training Accident.” Belfast Telegraph, May 11. blind-water-skier-settlesmassive-lawsuit-over-horrific-training-accident-28747939.html. Mitchell, David T. 2000. “Body Solitaire: The Singular Subject of Disability Autobiography.” American Quarterly 52 (2): 311–15. Peers, Danielle. 2009. “(Dis)Empowering Paralympic Histories: Absent Athletes and Disabling Discourses.” Disability and Society 24 (5): 653–65. Pine, Emilie, Susan Leavy, and Mark T. Keane. 2017. “Re-reading the Ryan Report: Witnessing Via Close and Distant Reading.” Eire-Ireland 52 (1–2): 198–215. Reihill, Dorine. 1987. Going Home: Story of Survival. Dublin: Poolbeg. Rohan, Dorine. 1969. Marriage Irish Style. Cork: Mercier Press. Smith, Brett, and Andrew C. Sparkes. 2004. “Men, Sport, and Spinal Cord Injury: An Analysis of Metaphors and Narrative Types.” Disability and Society 19 (6): 613–26. ——. 2008. “Changing Bodies, Changing Narratives, and the Consequences of Tellability: A Case Study of Becoming Disabled Through Sport.” Sociology of Health and Illness 30 (2): 217–36. Sontag, Susan. 1978. Illness as Metaphor. New York: Farrar, Straus, and Giroux. Sparkes, Andrew C. 2013. “Autoethnography at the Will of the Body.” In Contemporary British Autoethnography, edited by Nigel P. Short, Lydia Turner, and Alec Grant, 203–11, Rotterdam: Sense. Sparkes, Andrew C., and Brett Smith. 2007. “Men, Spinal Cord Injury, Memories and the Narrative Performance of Pain.” Disability and Society 23 (7): 679–90. Tubridy, Jean. 1997. Pegged Down: The Experience of People in Ireland with Significant Disabilities. Dublin: Institute of Public Administration. Tynan, Ronan. 2002. Halfway Home. London: Bantam. Van Alphen, Ernst. 1997. Caught by History: Holocaust Effects in Contemporary Art, Literature, and Theory. Stanford: Stanford University Press.

CHAPTER 6

New Media, New Lives: Self-Publication, Blogging, Performance Art

Beginning with a consideration of several self-published autobiographies, I will explore the ways various types of self-published texts define their community and operate both within and outside narrative conventions of writing about disability. The advent of relatively inexpensive venues for self-publication, particularly in economical e-book format, has produced a greater number of texts by persons who are not trained or professional writers. Although lack of advertising and bookstore circulation may limit their audiences, more recent publications of this kind are easily discoverable through searches in online bookstores, usually available electronically for a relatively small purchase price, and more accessible through adaptive technology than traditional book publication.1 Blogging can offer options for life writing that differ significantly from the models pervasive in traditional publication venues, especially in its ability to manipulate visual space and route the reader through hyperlink and alternative organizational patterns and narrative strategies. An analysis of the relationship between the paper diary and the blog offers insights into the blog’s functionality as a mode of disability life writing, as well as some of its limitations. While the subject of disability and self-referential performance art deserves a booklength study of its own, I will conclude with a very brief consideration of theatre as yet another medium for articulating embodied experience and the growth of performance art as a form of living text.

© The Author(s) 2020 E. Grubgeld, Disability and Life Writing in Post-Independence Ireland, Literary Disability Studies, https://doi.org/10.1007/978-3-030-37246-0_6

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Self-Publication and the Mosaic of Life Writing The metaphor of the mosaic seems to fit especially well with self-published memoirs of living as a disabled person in Ireland. The books are themselves small, unpolished, and of different contours and coloration. As straightforward chronological first-person narratives, none experiments with structure or language, yet each life and each voice is distinct. Despite the often patronizing and sentimental nature of the prefaces and endorsements that accompany most of them, the texts themselves avoid clichés and predictable arcs of narrative. All contribute to a larger design that continues to take shape as the nation has shifted from a governance dominated by conservative Catholicism to an adamantly secular one, as rural populations continue to urbanize, and as the urban centers contend with problems of housing and transportation. These memoirs also mirror a transformation in disabled people’s perceptions of their own rights and possibilities in the face of what are sometimes daunting setbacks. The self-published memoirs of David Lane and Mossie Forde, addressed in my previous discussion of institutional survivors and the independent living movement, succinctly and evocatively capture the failure of the state to deal with the physical, intellectual, and emotional needs of disabled children during the mid-century period; of the five examples, I will briefly address here each has its own agenda and singular voice.2 Born in 1941, John Curran speaks for an earlier generation, but his experience differs greatly from those who grew up with disabilities at midcentury. As a result of an accident, Curran became quadriplegic in 1978 at the age of thirty-six. State funding to help underwrite medical expenses, unthinkable in prior decades, allowed him to purchase a suitable van and necessary equipment; he was financially secure and surrounded by loving and supportive people. His Just My Luck! (1993), written unassisted and self-published with the help of local organizations and business, stresses the helpful role of family and community, his deep roots in County Kerry where his family has farmed the same land for four generations, and his great love of his townland’s culture, history, and landscape. His second memoir, Tides of Change: Memories of a Kerry Childhood (2004), is much less concerned with his own childhood than with the rich folkloric world in which he came of age. While including some strong statements on the difficulty of navigating the health services bureaucracy and the injustice of requiring family members to work full-time as uncompensated personal attendants, and speaking frankly about the physical difficulties of toileting,

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sexuality, and the danger of infections and bedsores that accompany life with spinal cord injury, his memoirs are also unusual in their deep devotion to a specific locale and a sense of embodiment that is inseparable from his geographic placement. Leigh Gath’s Don’t Tell Me I Can’t (2012) takes her from a small town south of Belfast to Austin, Texas, and eventually to Limerick where she resettled with her second husband, but her sense of place is also strong and integrally related to her story. Unlike Curran, Gath was born with significant disabilities, deriving in her case from the administration of Thalidomide to her mother during pregnancy. Refusing to believe that her daughter needed institutionalization, her mother kept her expectations high, and Gath received physical therapy, training in life skills, and an adequate education in Belfast’s Fleming Fulton Special School, a nonsectarian institution established for young people with physical disabilities. Her family were Catholics living in a Republican enclave in Newry, a small town south of Belfast, but most of her schoolmates were Protestants, some of whom had never spoken to a Catholic in their lives. Unlike athlete Janet Gray, who is silent on the subject of the sectarian divide and the nearly thirty years of civil war in Northern Ireland, Gath explores its effects on her early life, sometimes with a kind of grim humor at its absurdities, such as her Protestant classmates’ complete ignorance regarding Catholicism and their fears of being kidnapped by nuns during a school excursion to Dublin. As a teenager, later as an underemployed office worker, and then as disability activist, she found herself frequently in dangerous situations, including an incident in which Protestant paramilitary gunmen stopped her car at a roadblock and she sat terrified of being shot; instead, she was recognized, complimented on her work with Disability Action, and assured that they would watch her car to be sure she was not attacked. On another occasion, she vigorously campaigned for sidewalk ramps by rambling down the middle of the road in her electric scooter as act of nonviolent public protest and writing a letter of complaint directly to the highly controversial Protestant Unionist politician Enoch Powell. When Powell, who had refused to meet with Thalidomide victims or launch an inquiry into the use of the drug while he was Minister of Health, nevertheless appeared unexpectedly on her mother’s doorstep, the family was afraid they would be shot by their Republican neighbors were anyone to see him. The outcome of this drama—comic only in retrospect—was Powell’s capitulation to her demands and the construction of accessible footpaths around most of Newry.

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Gath’s memoir, told in a tough, witty, but compassionate voice, records her growing involvement in disability rights, evolving from a sense of selfacceptance for which she credits her mother and siblings. At twelve, she made the decision to forgo prosthetic legs as an uncomfortable nuisance whose primary purpose was to render her less visually offensive to the nondisabled, while having shoes designed that did allow her to walk short distances in places where her power chair would have been difficult to maneuver. She was a young woman full of plans and ready to take on the world, only to encounter job discrimination and romantic difficulties with men who were ashamed or unsupportive of her needs. She also recounts her struggle with the impulse to avoid other disabled people for fear of drawing attention to her own disabilities, an impulse that diminished the more she became involved in organizations with an activist agenda. Her book narrates, then, the discovery of a vocation originating in a strong sense of self-established in childhood, a conviction that injustice could not continue unanswered, and in the practical necessity of advocating for oneself as a disabled person in an inhospitable environment. Two other self-published memoirs offer, again, very different parts of the mosaic. Brendan Brophy was born with cerebral palsy and attended both a local school and the Marino Centre, where he received academic training along with expert speech and physical therapies. His brief memoir On Three Wheels (1996) is unusual in that, unlike most memoirs, its completion and publication was something of a community effort. The introduction reveals that a committee was established for that purpose and that the title was a matter of debate among committee members who eventually chose one of Brophy’s suggestions. The memoir also functions as an homage to a recreational respite program where he received training in computer skills, making possible the fulfillment of his ambition to publish his life story. The corporate nature of the book’s final version and the prospect of an immediate and real readership within Brophy’s small town may be in part responsible for its constrained voice. Yet the result is not the saccharine feel-good tale that might be expected from a book sponsored by the local Credit Union and Rotary Club. He clearly outlines some of the frustrations he has undergone as a physically disabled man in rural Ireland. Although an intelligent and capable adult, his opportunities were limited to pilgrimages, as funded trips to Lourdes appear to have been readily available, and some participation in adaptive sports, although he repeatedly missed the top scores that would have given him the chance to travel and train for the Paralympics. Despite the health benefits of

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sports participation and the comradeship even the religiously lukewarm or disenchanted appear to enjoy on Lourdes pilgrimages, neither is a substitute for meaningful employment and supported independent living. A report released as recently as 2018 found less than one-third of people with disabilities employed in Ireland, citing lack of support for private sector adaptation, failure to lead in the public sector, and problems with transportation (Banks et al. 2018). For the most part, Brophy restrains himself from expressions of emotion beyond some disappointment in himself for his athletic performances and for the decision to finish his schooling without earning the leaving certificate. While his editor remarks on Brophy’s “strong sense of privacy” and the way “some curtains remain drawn” on his difficulties in establishing adult relationships and periods of depression (and in those remarks publicly disclosing information Brophy himself had chosen not to reveal), he suggests that perhaps after having now written a first memoir, Brophy would be willing to “write in greater detail…about the physical and mental stresses that make such heavy demands on boys and girls, men and women, who find themselves equipped with bodies that refuse to obey their commands” (Brophy 1996, iv). However, when Brophy does express stress, it has little to do with his unresponsive body and much to do with the ongoing problem of unemployment, with “almost six years at home doing nothing,” and fearing he would be “simply vegetate” (82), as well as with the problems of socializing when one’s friends fail to offer invitations to accompany them on their nights out or a nightclub refuses to admit someone whom, they claim, would not be covered by their insurance and whom they suspect to be intoxicated because of his speech and movement (58–59). A less immediate and personal audience might have allowed greater candor, but, judging from what he has written, that would concern the low expectations, discrimination, and stigmatization that bar his full participation in adult life. Suggesting by example the ways community building among disabled people can enrich the inner life, Robert Dowdall’s Beyond the Darkness (2014) narrates the friendships, travel, and the discovery of his life’s work that came about through his extensive participation with the National Council for the Blind. Blinded by a car accident at nineteen, Dowdall recounts his gradual adjustment, his need to break free from the excessively solicitous and protective family circle, and his eventual acceptance of the need to use a white cane and, later, a guide dog who enables him to move about with confidence. The last half of his book is devoted to

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recounting his experiences as a world traveler, tandem bicycle enthusiast, and mountain climber with NCBI-sponsored excursions. Through both stories and expository passages, Dowdall’s narrative decisively argues that the onset of a disability requires letting go of the old life and acknowledging the new, as difficult as that might be for all involved. He believes that the instantaneous and complete loss of his sight may have made that adjustment less taxing than for those with degenerative impairments. Recounting an episode from his time at the Royal National College for the Blind in Hereford, he recalls his partially sighted fellow students stumbling with linked arms behind him and his guide dog on return from a night out; afraid of appearing different from sighted people by using walking aids, they put themselves in a position of dependency upon a totally blind man who gained his mobility by being willing to let go of any pretense at passing as sighted. At the same time, he learned to understand what he calls their “predicament” of rapidly losing the sight they have and recalls that “some of them felt as though they were living in a parallel universe, being neither blind nor fully sighted….they felt they stood out in a crowd, that they felt they looked awkward and the general public often assumed they were drunk and sometimes mistaken for being on drugs” (Dowdall 2014, loc. 1973). Their fear of being stigmatized keeps them isolated, whereas Dowdall describes himself as willing to chat up “the devil himself if I thought I could get a bit of craic, or a half-decent conversation, out of him” (loc. 1992). Because of his willingness to both identity as Blind and to venture out beyond the social circles of the college, he becomes increasingly alienated from the other students and wonders if he also belongs neither to the world of the sighted nor to the world of the blind. As Dowdall writes about his involvement with the NCBI after his return to Ireland, he traces the development of that sense of belonging for which he sought while in England. As a participant in NCBI recreational activities, he takes on increasingly challenging hikes, bicycling, and climbing adventures, including the ascent of Mt. Kilimanjaro and bicycle trips through Latin American, Asia, and the United States. Although he does take some pride in being the first blind person to reach Kilimanjaro’s peak, he does not exhibit the competitive personality evident in the sports autobiographies discussed in the previous chapter. Nor do we see, despite his jocular and beer-filled camaraderie with his fellow teammates, the hypermasculine ethos sometimes associated with wheelchair basketball and other male-dominated sports. Instead, Dowdall depicts the sheer joy

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of mountain climbing, the glorious sharp clear air and the bright smell of the trees, and even the spiritual peace that comes to him in the wilderness and especially in such sacred places as the Himalayas. Having rejected the Catholicism of his family, he draws from “the strength and energy of the great Himalayas” (loc. 1786) and eventually takes up the serious practice of Yoga and holistic healing. Qualifying as a certified massage therapist, he, like so many other disabled people, confronts unyielding discrimination when seeking employment but eventually sets up his own small independent practice. Dowdall mutes the triumphalist path of his narrative by acknowledging his ongoing struggle with depression, which he describes as more difficult than blindness, but in general his story is one of community with other disabled people and the discovery of a private spiritual path. Last in this rapid survey of a few exemplary texts is a short memoir by a boy of eighteen. In 2012, Tommy Collison, who had been blogging as TrustTommy since the age of fourteen, self-published It’s Me, a retrospective narrative of his life interspersed with commentary on issues related to disability. Rereading his years of blogs, he reports having discovered in them a developmental narrative of his maturation that gave him a basis for a book that is roughly chronological. Although the character of Tommy remains unchanged in any major way, he traces the ebb and flow of his boyish confidence along with discoveries of new talents, such as singing and acting, and an increasing facility at managing his life independently. Written while he was still in secondary school, the memoir glides easily between addresses to different kinds of readers, perhaps as the result of his having addressed multiple readerships on Trust Tommy. Like many of the blogs I will next discuss, his memoir also weaves personal narrative with exposition, finding in his own circumstances a starting point for discussing broader concerns. For example, his memories of particularly effective physiotherapists and teachers lead him to speak directly toward those kinds of audiences, pointing out precisely why certain ways of interacting with disabled clients and students are preferable to others. Some stories speak to other disabled young people, such as his discussion of the decision to use a cane while navigating school halls despite his initial embarrassment at doing so, to use a wheelchair while recovering from knee surgery (preferable, he states, to falling in the street trying to prove something unnecessary to prove), and later, to use a crutch while rehearsing his role in a school play.

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Because of his parents’ income and educational level, Collison had few dealings with institutions beyond hospitals. His mother—like Christy’s Brown’s mother—rejected early assessments of his prognosis as intellectually disabled and unlikely to live independently, but unlike a Bridget Brown, she was able to insist on his receiving the education that eventually led to his graduation from New York University with a degree in Journalism and Middle Eastern and Islamic Studies. Both parents worked with him on the physiotherapy exercises that loosened his speech and strengthened his muscles, as well as taking him to the United States for advanced surgeries that led to better posture and increased mobility. Although he makes no comments that would lead the reader to believe that he has thought directly about matters of class privilege, Collison is keenly aware of the ways his body needs certain kinds of attention and probably always will. Rejecting a triumphalist story about overcoming or living in spite of a disability, he argues that “that the way to live your life isn’t so much ‘in spite’ of your disability as much as ‘in tandem with it’” (Collison 2012, 28), managing its symptoms with pragmatic approaches that must be recalibrated daily, and discovering something to be “outrageously passionate” (38) about and toward which one can direct any energy left over from the meeting the sometimes unpredictable demands of the body.

Blogging: Purposes, Readerships, and Structures of Selfhood The daily recalibration of energy and the conviction of a purpose underlie many blogging efforts. The structure of the blog, evolving from the genre of the diary, offers a compatible medium, perhaps more so than the booklength memoir. The blog also offers more room for experimentation and more adaptability to the ups and downs of pain and fatigue. Life narratives of disability have often molded themselves into patterns observable within the literature, media, and popular discourse of specific cultures. Those patterns are in turn enforced by the demands of a publishing industry responsive to the expectations of readers. As a species of life narrative, the online diary, or blog, can offer new narrative structures for disability life writing that differ significantly from the models pervasive in traditional publication venues. They also challenge the assumption of a solitary writer and reader by their ability to create communities of exchange. Blogs can serve many functions: observations on world events; gossip about celebrities and athletes; the self-promotion of public figures in

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media, politics, or sports; information and advice for those seeking help with financial problems, divorce, weight loss, or almost any other concern. The blog roll, generally placed to the side of one’s own text leads readers to other blogs of common interest, potentially creating networks of information and dialogue. Some have suggested that the blogs function primarily as sites from which to look outward toward other websites or offline events rather than to introspectively review one’s life. However, to define blogs in that way is to give undue emphasis to the types of blogs generally produced by well-educated and politically engaged adult men at the expense of more narrative and self-reflecting blogs often written by women and young adults.3 Some have argued the necessity of distinguishing the blog (as originating in ideologically oriented lists of relevant links posted on list serves and discussion boards) from the online diary (originating in the confessional rhetoric of the Live Journal platform popular at the turn of the twenty-first century).4 That distinction may well be a false one, as the two motives and forms often meld. Suzy Byrne, a well-known Irish disability activist and journalist, recollects how personal expression, research, and public advocacy came together in her twelve years of blogging as “Maman Poulet”: Blogging or twittering or other interacting with social media or using a message board is a powerful tool that many dismiss. I blog because I can. I write things that interest me or bother me. I spent a lot of time reading other blogs and just started my own as a place to start to put thoughts together. My curious mind then got the better of me and the research and the opinion came together. (Byrne 2009)

Similarly, the subtitle of Sarah Fitzgerald’s blog Yummy Wobbly Mummy: Parenting, Activism and Everything in Between speaks to its fusion of political commentary, disability activism, and personal narrative. Including genres as diverse as lyric poems and an open letter to Taoiseach Leo Varadkar, her blog’s entries most commonly address public issues through a personal story: her own toddler and the problem of body image for girls and women more generally; her experiences as an English major and the way disabled people are often pushed into supposedly practical fields of applied education; a day of shoe shopping and the difficulties of finding attractive and supportive footwear for a woman with cerebral palsy. While many blogs serve as launching sites for small essays on current issues (whether directly related to disability or not), others are more

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narrative and recount a life either diaristically or from a retrospective viewpoint. Some, like David Lane’s Tales from the Institution, discussed in the third chapter of this book, use the blog space to publish what is essentially a full memoir, chronologically told and imagined as a whole unit. The blog, in short, may be both narrative and expository, as well as personal and public; in a blog like Fitzgerald’s, these features are integrally fused. The blog thus occupies a nebulous space between private and public text, and this consideration is important in terms of both its form and its rhetoric. The impact or anticipation of audience or reader in the text is similarly complicated. Yet while some bloggers define the motive for writing as a predominantly self-reflective one, most disabled bloggers declare their purpose to be the dissemination of information or encouragement to others with similar impairments, educating those without these impairments, leaving a legacy for children or other loved ones, or registering their take on any number of religious, political, or social issues from a disabled perspective. Stephen Kuusisto writes in his introduction to a special issue on blogging in Disability Studies Quarterly that The web log is part notebook, part opinion magazine, half public speech, half the stuff of privacy. It is shrill, uninformed, sober, giddy, and in the right hands, a medium of inquiry. One thinks of Charles Dickens’s description of the writer as being an “ink stained wretch” for like the dailiness of journalism, the blog demands constant attention: noteworthy bloggers often have hundreds, if not thousands of readers who expect fresh material each morning. In turn the blog allows for conversations between writer and reader as well as offering a cyber space “agora” — a very public space for argumentation, agreement, truth telling, and occasional lying. (Kuusisto 2007, 1–2)

If Kuusisto is correct, audience plays a great part in the rhetoric of blogging. In a study of weblogs and guides to web blogging, Julie Rak concludes that many bloggers understand the blog “as an outlet for unofficial writing that takes place outside professional publishing. It is designed to bypass the traditional circuit of publishing between the writer, agent, editor, publisher, distributor, and seller.” She continues, “In the available guides to constructing blogs, bloggers are encouraged to see themselves as writers who want an audience and want to be part of a community, and who should be willing to forego certain aspects of anonymity

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and privacy in order to build readership” (Rak 2005, 175). Tommy Collison speaks of his conscious effort not to reveal personal information about other people, but adamantly believes that too often…there’s a sense that people shouldn’t talk about their shortcomings and impairment, especially given that the internet gives people the opportunity to put forward their best sides and not talk about other facets of their personalities…I came to realize that writing openly about my struggles with disability was not only cathartic to me…but other people— who I’d never met and only knew me from what I wrote online—appreciated my posts on CP too. Some were grateful that someone with firsthand experience was talking about their disability, while others who didn’t have CP but appreciated the insight into what it was like to live with a disability. (Collison 2012, 16)

In studying the blogs of Irish women with cancer, Claire Lynch expresses concern that the tightly woven circles of writers and readers with cancer limit the blog’s potential to reach a wider audience (Lynch 2014, 112). Yet the establishment of community like the one Collison describes may be a far greater value than having one’s work read more widely. Bloggers who manage to connect with others whose experience dovetails with their own repeatedly speak of their readers as members of a community. Suzy Byrne recalls that even before message boards, blogging, and Twitter, the early technology of the list serve allowed her to form bonds with women who were like me—disabled lesbians because in the early/mid 90’s there were not many out lesbians and fewer still out disabled lesbians and I’ve always found the “community” difficult to access. The disability “community” was a hard place to access also….I also received the greatest acts of kindness when going through hard times as I spoke about things I could not speak about anywhere else. I blog because I can. I write things that interest me or bother me. I spent a lot of time reading other blogs and just started my own as a place to start to put thoughts together. I also used this time to access information on issues and use it in my political and personal life. Living with Lupus in the 90’s was a very lonely space. I found a lupy community all over the world and got information on the newest medications and moral support from people I never met. (Byrne 2009)

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Similarly, Collison recalls how the blogging community he entered as a young teenager encouraged him to use the cane he had avoided: “Previously I’d shied away from using a cane because I didn’t want to be different,” he remembers. “Now, though, when the suggestion came up at a physio appointment, other bloggers with disabilities talked to me and I realized that, not only was it worth it, but it was okay if it made me a little different from others” (Collison 2012, 17). Thus despite an audience that may in some cases be quite small, the blog acknowledges itself as an interactive public document with the power to affect the lives of strangers. In looking at disability blogging in particular, we must consider not only how it operates within a rhetorical context of readers and fellow writers, but how a text is being produced and how the structural features of a hosting website affect what we read and the life that is written on its digital pages. This question invites a comparison of the blog and its ancestor, the paper diary. The relationship between the diary and the blog as genres has been a subject of much discussion and debate. Blogs do resemble diaries in a number of ways. As Madeleine Sorapure has noted, “The insistent presentness of the web—the imperative to keep web sites updated—parallels the diary’s traditionally non-retrospective autobiographical form: a series of entries, each one dated and rooted firmly in its present moment” (Sorapure 2003, 2). As she suggests, blogs are not static productions; the shape of the blog is one of gradual accretion, with new entries supplanting the old and the old is rarely revised or altered in light of the new. Rather than giving the impression of a static point of narrative consciousness from which a story is told retrospectively, the blog and the diary foreground the voice’s perpetual reemergence in everadvancing points in time. Although certain themes or subject matters may dominate, the organization is nearly always chronological, even as some bloggers create a formal structure that differs from traditional diaries in deemphasizing and obscuring the reader’s sense of linear time or of its dominance as an organizational structure. With some literacy skills, an Internet connection, and an accessible computer that accommodates one’s physical needs, anyone can write a blog. It requires no editorial approval or publisher’s agreement, nor any necessary conformity to certain accepted arcs of plot, levels or types of

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language, subject matter, or modes of voice. There are hundreds of selfidentified disability blogs in the Anglophone world with ironically humorous titles that defiantly display the very derisive slurs with which disabled people have been denigrated through the years like GimpyGirl, and AngryCrip, or playful titles like Arthritic Young Thing, Amputeehee, or Crip Chronicles, each an unlikely candidate for the title of a book that is meant to sell but entirely acceptable within certain blogging communities. Like the diary, however, the writing it engenders is inevitably shaped by the rhetoric of its genre and by the material demands of the medium. As the writing within a diary is affected by the size of the page and instrument for writing—pencil, fountain pen, keyboard, or voice-recognition software—so is the blog a product of the dimensions and features afforded by the hosting site. It is partly for this reason that I am entirely bypassing a discussion of social media sites like Facebook and Twitter, despite Laurie McNeill’s revelatory analyses of “auto/tweetographies” (McNeill 2014) and Claire Lynch’s expectation that despite being “a drip-feed of textual self-portraiture,” “there is a very real potential that these fragments of life will be read as a complete narrative, as several years’ worth of observations, reflections and commentary are collated” (Lynch 2018, 386).5 Social media sites are too much the controlled product of their design features to share in the relative freedom of the diary or the blog. Nevertheless, it must be conceded said that many of the blog sites most accessible to a novice, like BlogSpot, are also restrictive in design, provide little alternative to a chronological organization, diminish graphic possibilities, and relegate hypertext to a few links between portions of conventional text. If the blog can present an opportunity for revisionary voices, it is nevertheless important to recall that despite the proliferation of increasingly lightweight and relatively inexpensive technology, some prospective writers remain “off the grid,” a descriptor I use metaphorically but which has origins as the description of a household without electrical power or utilities like water or gas. Many recent studies have examined precisely who is “off the grid” of the Internet and why, and the barriers to connectivity are unsurprising: class, age, geography, and frequently disability—not only because of inaccessible technology but because people with disabilities are much more likely to live with reduced incomes than not. Still, blogging has allowed for a greater participation in life writing by those of limited income or without much formal education, as well as those

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who live in congregated settings or are isolated due to a lack of appropriate housing, transportation, or employment. The vlog, or video blog, has similarly become a tool for communication and expression among the Deaf and other users of signed languages, as the podcast functions for people with sight loss. A small entry, left unrevised and superseded by a newer one, may be—like Twitter—more physically feasible for someone with limited experience in writing or access to a computer, or whose writing endeavors are circumvented by pain, spasticity, or other problems that discourage longer structural units within a text. In his study of online life writing, at this date still untranslated, Philippe Lejeune asks the tantalizing question, “notre moi, notre intimité ne sont-ils pas façonnés par les moyens d’expression et de communication?” [Our selfhood, our inner lives, are they not shaped by our means of expression and communication?]. Although we may never know another’s inner life, the adaptive technology of a computer and the instantaneous publication and anticipated audiences of online writing shapes the self we apprehend as readers of blogs (Lejeune 2000, 11). This shaping of a narrative self takes different forms, but the blog, unlike other public forms of writing, allows for a mimetic recreation of the repetitions and the fluctuating levels of functionality that often accompany disability as lived experience. By showcasing the diary in a public forum, they can give insight into the daily: the instabilities of the body and efforts at various therapies, in addition to diaries of surgeries, medicines, and interactions with doctors, social workers, insurance company staff, and other representatives of the institutions with whom disabled people routinely interact. They accurately capture the ongoing necessity for recording symptoms, treatments, and responses, while also articulating the daily bodily self-evaluation that certain kinds of disability require. Most disability bloggers do not write every day because their bodies get in the way. Although the mere recording of events seems not entirely satisfactory to the many disabled bloggers who provide meta-commentary on their entries, such records require the reader to enter the world of the writer rather than confining the blog to patterns of experience more familiar and palatable to readers with conventional expectations. At times, the recitation of such details carries its own narrative power, as in “3343 Needles,” a winner of the 2018 Irish Blog Awards. Perhaps best described as a prose poem, the post concerns eleven years of daily injections for MS symptoms, now mercifully reduced to weekly injections. Its fragmented and repetitive lines evoke the tedium, the harassing side effects, the waiting, and

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the daily appointments that robbed the author of time now available for reading, studying, writing, and enjoying other interests (Van Eeckhoutte). As possibilities abound, it is yet true that the instantaneous public readership of online life writing can bring certain dangers. Like a diary that has fallen into the wrong hands, the blog can be read by the wrong eyes, and this sense of an adversarial audience affects some content and approach. Sarah Lewthwaite, a researcher on disability and media at the University of Southampton, addresses the phenomenon of employers, and conceivably those who monitor disability allowances for housing and personal assistants, examining open-access web writings such as Facebook posting and blogging in an attempt to “catch the imposters.” She writes, Facebook interactions known to be private and frivolous, have become caught up in a legal and corporate project to define how much disability is required to qualify as disabled….any number of assumptions about what constitutes a disability are enacted. More importantly, an underlying concern can be perceived regarding the force with which the boundaries are decided without reflection. I would argue that these moves “discipline” disabled people. In this way, disabled people must perform a strictly defined role. The abilities of a disabled person are rendered suspect…there is no room for grey areas, i.e. the complexity and diversity of impairments that exist in day to day life. (Lewthwaite 2011)

Not only does the threat of surveillance potentially inhibit efforts at textual self-representation but, as Lewthwaite astutely points out, narrows what that representation might be. Writing about disability in contemporary Ireland also has to grapple with the fact that particularly endemic to Irish culture has been the view of the body, until quite recently, as a fallen vessel. When the body finds a voice in the mid-1990s, it is often a story of abjection: molestation, sufferings, and starvation. If physical impairments govern what one does with the day, one may well write from and about the body. But if doing so produces a “misery memoir,” then those who do not feel miserable may lack a model for self-representation beyond the cheerful admonitions to optimism ubiquitous on the sites of service organizations. In an email to me, long-time blogger Eric Doran protests my suggestion that his blog is an autobiography: he states that “the site for me is just a communication tool but not an autobiography. I don’t feel like writing something very personal for the world to see for free.”6 He addressed the issue on his

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website later that month, asserting that his website “is certainly not an autobiographical attempt. I don’t feel the need to expose myself, warts and all for free. So, what is here is that which I don’t mind other people reading” (Doran, 15 June 2009). Four months later, he reiterated that “it’s NOT an autobiography by any means and anything on this site is carefully vetted by myself” (18 October 2009). His rejection of the genre as descriptive of his own practice is in truth a rejection of a very particular notion of autobiography and reveals three highly significant assumptions: that autobiography is necessarily confessional, that it makes the writer subject to a public voyeurism, and that it transforms one’s life into a sellable product. His shrewd perception of the state of contemporary autobiography points to why it might appear a less than desirable medium for those who do not see their bodies as victimized or abject.

Two Irish Bloggers as Life Writers Although some disabilities are fairly static in their symptoms and may cause no added impairments beyond temporary side effects of medicines or occasional curable infections, some are degenerative. The arc of plot reverses the traditional quest narrative in moving from initial strength and mobility to decreasing control and, in some cases, premature death. However, a blog format allows for flexible possibilities of organization. Eric Doran’s Not Going Quietly, which explores life with the degenerative disease Friedreich’s Ataxia, was in its original format one of the most striking examples of a structural recasting of the narrative of decline. For those who are writing narratives of their lives, the blog can become a means to shape that narrative and to adopt, adapt, or even reject the plots or storylines in which disabled lives have conventionally been told. To draw again from Madeleine Sorapure: Representing the self in a database form—creating and coding information about oneself, populating a database that readers subsequently query— develops and reflects a sense of identity as constituted by fragments and segments, each of which is separately meaningful and equally significant. In an online diary, pieces of information about the self may be brought together in different configurations, signifying multiple and shifting ways of understanding the self. Although a print diary is also structured like a database of entries, the self-representation it contains appears to be

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more continuous and unified by virtue of its being chronologically continuous, bound together in a book or notebook, and read linearly. For online diarists, writing on the computer and publishing on the network, the database form more thoroughly infuses self-representation. (Sorapure 2003, 7–8)

Not Going Quietly has been through several different manifestations, and although the format I analyze here ended in 2013 and is now readily viewable only through the Wayback Machine of the non-profit Internet Archive (https://archive.org), the possibilities it suggests for selfrepresentation render it invaluable for this discussion. In its earlier format, the blog site included a “what’s new” category in its contents box that allows a reader to join Eric Doran at his most recent posting. However, because he was able to have a website designed specifically for him that was not dependent on the rigid format of a platform template, his entries were not dated, nor did they appear in the order of posting. Instead, the inner world of his blog could be entered through key words listed on a contents box to the side of the text. Such an index is typical of blogs, but its exclusivity as the sole means to entrance is still very unusual. These tags allowed Doran to move out of a linear storytelling into a more lateral arrangement of interests and experiences. Although this feature could be replicated in a print diary, it would be, as it is in the blog-world, very atypical. His stated intention was to use his own stories to provide information and support for others living with Friedreich’s Ataxia and to write in resistance to the stifling views of disability he encountered in Ireland and elsewhere. Acutely aware of the ways it has shaped his sense of himself, he explains, A wheelchair is a mobility tool, nothing more, nothing less. However it often seems that I am subsumed by the chair, being called wheelchair man or more often wheelchair boy. No wonder I fought it so vehemently. I remember when I was 16, and my balance was real bad, so bad that everywhere I went I would get angry stares by people convinced that I was stoned or drunk. I would wait for as few people to be around as possible before I’d start moving. I viewed a wheelchair as a final sign of defeat that would turn “me” into one of “them.” I literally “walked” until I dropped. (Doran 2006)

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Part of his resistance to being “subsumed by the chair” is to “to give expression to some issues on my mind…I am going to take up my two index fingers and pound them for all they are worth. The what’s new page is my soapbox and commentary on whatever issue takes my fancy, or just plain gets on my nerves…I am tired of looking up Friedreich’s Ataxia, and only finding impersonal medical type pages which are very one dimensional” (2006). Although the overarching plot of his life writing chronicles the gradual loss of his mobility, within that timeline of physical decline he creates a wide variety of other stories: his search for adventure and fulfillment through travel, his wry and often ironic perspective on the foibles of others (especially the uncomprehending rigidity of airline companies), and his iconoclastic views on individual rights, politics, religious dogma, and the abuses of power. At the same time, he clarifies that “I don’t want some Pollyanna site, proclaiming to everyone how I cope with FA everyday with the help of jesus (deliberate small j). Friedreich’s Ataxia is something I honestly wouldn’t wish on a dog, but it is my reality, so I just better get on with it!” (2006). Unlike most paper diaries, Not Going Quietly in its earlier versions could be entered at any point without the reader having a sense of skipping the beginning; in a sense, it had no beginning, middle, or end. Its structure thus countered the deterministic textual dominance of an illness’s progression or a body’s degeneration. The motion toward death was circumvented narratologically by the topical and spatial arrangement. By means of this non-chronological “table of contents,” Doran could organize his textual self according to the many places he has traveled rather than the relentless deterioration of muscular control that is symptomatic of his disease. He was able to recreate himself as a resilient and tough-minded world traveler to Egypt, South Africa, India, and the wilds of Manhattan, and as a man with strong views on politics, religion, and other matters. For those able to move beyond the prefabricated architecture of popular blogging platforms, the online diary can, as in the case of Not Going Quietly, eschew chronological organization in favor of a topical organization that maintains the speaker’s integrity as an ongoing participant in the life of the world. And to use a genre and also to adapt it, to work within inherited forms of narrative and also to adjust them is to establish agency and voice in narratives that speak, as Arthur Frank would have it, both about and through the body’s experience (Frank 1995, 2). Because Friedreich’s Ataxia is a degenerative disease, of late Doran has experienced a precipitous decline in mobility and his ability to travel. For

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reasons that are probably both financial and related to accessibility, his blog structure has undergone three changes since its original manifestation, all of which, including the original, are viewable at the Internet Archive. The current blog is very rudimentary and lacks the spatialized structure of its original format as well as the more extended posts and videos of the two different formats he used from 2013 to 2017. He continues to articulate his objections to charitable organizations and religious fundamentalisms, while also expressing concerns over what will happen to him once his mother is no longer able to assist his rapidly increasing physical needs. Even the structural changes in his blog, I believe, are still expressive of its potential to maintain a rigorous fidelity to felt experience through not only its content but its medium. An equally noteworthy but very different kind of blogger is Sarah Fitzgerald, whose ongoing blog at WobblyYummyMummy.com is archived back to May 2014. A freelance writer and editor with training in literary studies and creative writing, she is also a disability activist, frequent contributor to the news media, wife, and mother; her family is profiled in Wildfire Films’ “Somebody to Love,” which explores love relationships among Irish people with a wide variety of disabilities and premiered on RTÉ One in 2014. Fitzgerald’s blog maintains a simple chronological organization, although topics and names can be located through a search box. Her cerebral palsy produces periods of pain and weakness, but her impairment is not progressive. On the blog, she marks time not by the symptoms of her impairment but by her daughter’s birthdays and Valentine’s Day greetings to her husband. Far from being sentimental gestures, these elements are contextualized by stories that drive home how hard she has had to work against assumptions of her incapacity in order to achieve an independent domestic life. The narrative and expository aspects of blogging are here seamlessly integrated, and the blog makes its probing queries and impassioned arguments in the context of her life experiences. In video portrait posted by the Independent Living Movement Ireland (formerly the Centre for Independent Living), she ends her comments by affirming that “We are the experts in our own lives” and that “It’s about taking control and being the person you are, rather than the person you are perceived to be” (ILMI 2018), and these remain key themes during five years of blogging. In a light-hearted post, she imagines how she must appear to a child who comes to the door on Halloween:

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What they see is a misshapen young lady, with sudden and uncontrolled movements, saliva flowing freely as she reaches her hand into the oversized tub of sweets, her speech slurred as she compliments their shopbought costumes…I can’t imagine what it’s like to be that young child on my doorstep, but it’s clear to me that my disfigured body and unusual movements are scarier than any costume they will ever see. For somebody who doesn’t have one, having a disability can be a frightening prospect. (Fitzgerald 10/14)

This frightening prospect takes an ominous turn when others perceive her as incapable of taking care of a family. Pregnant with her first child, she finds the medical professionals with whom she must cooperate baffled “at how somebody, who would be traditionally perceived to be an object of care, could in turn fulfil the physical and emotional demands of a small baby” (Fitzgerald 9/14). In a series of entries from December 2014, she draws together her thoughts on the significance of her work as a writer and activist, the loss of a mother who goaded her toward self-sufficiency, and the abiding and very real threat of losing her autonomy. She writes, she says, to push back against the implications of what she calls “one of the worst moments of my life,” the day my husband and I were supposed to take Alison from the hospital, It was a Monday, and I was recovering marvellously from my section. I was feeding Alison well, and she was thriving. I was even walking a little using a walker, having had to use a wheelchair for the last three weeks of the pregnancy. However, I felt emotional and like shit; my section scar was sore, I was missing my own mother like crazy, and it felt like fluid was leaking from every bodily orifice. And this was the moment that the head midwife, ward manager or whoever she was told me that they had “concerns” about my ability to take care of my daughter. My heart broke. In that moment, it felt like Alison had died. I rang my husband and told him to take Ali with him and leave me behind, because it was me, not him, that they had the problem with…After numerous phone calls to social workers, public health nurses and Offaly CIL, we were allowed home, on the condition that a Public Health Nurse could come to our home every day and monitor our “progress.” (Fitzgerald 12/2014)

Throughout their daughter’s childhood, she reflects, they have never felt safe from scrutiny, never free to make the mistakes most young parents make, never able to share their questions or needs for fear of being

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thought incapable. Her own story, though, is not her sole focus; she also understands it as an exemplum of the way disabled people are routinely subject to surveillance and evaluation, as well as being instinctively mistrusted as to their own abilities to manage their lives. Interlaced with this experience is the memory of her mother and a concurrent memory of all the pioneers of the independent living movement who in their passing have left such gaps of leadership. Reeling from the death of one of the movement’s most dynamic leaders, Martin Naughton, she recalls again in a post from the following year the fear in which she and her husband lived after the birth of their daughter and earlier memories of her mother’s resolve that she become selfsufficient. Interlaced with these memories is the contemplation of a robin that flew gently into the house, as if a messenger from the dead. Ruminating on all of this, she articulates the urgency of her need to speak out both through direct activism and through writing: When it seems that all the greatness of the world is slowly disappearing, will we be able to find the courage to look within ourselves to see what we can offer? And if we can’t trust ourselves to do this, who can we trust to educate our legacies to our children? That’s why we need to tell them about the past, the robin. We all need to know where we came from. And sometimes we need a reminder, so that we may create meaningful legacies for them. We need to remember the past, not to live in it, but rather to use it as a blueprint to make our own mark in history. (Fitzgerald 9/2017)

At its best, electronic media can disseminate the work of someone like Sarah Fitzgerald to a readership who might not purchase a book or be able to read a print text, allowing her to make that mark in order to offer to others a blueprint for what might come next.

Visual Self-Representations Similarly, viewers who may never have the opportunity to attend an exhibit or performance have access to such events via electronic distribution, although the possibilities for dialogue and community building offered by a blog or social media are less apparent. The much-discussed work of Irish photographer, painter, and performance artist Mary Duffy stands with the self-portraiture of the Mexican Modernist painter Frieda

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Kahlo and contemporary artists like Tanya Raabe Webber and Lucy Jones in representing their own disabled bodies in frank terms that both invite and confront the viewer. Her ground-breaking performances from the 1990s, invoking both visual images and autobiographical narration, have reached a wide international audience by their incorporation in the 1996 American film Vital Signs: Crip Culture Talks Back (Mitchell and Snyder 2000), which has in turn been disseminated through YouTube. Without the availability of the DVD for purchase and the free medium of YouTube, it is unlikely her performance would have garnered so much attention and analysis. A comparable performance by playwright Rosaleen McDonagh, The Babydoll Project (2003), recounting her experiences growing up as a Traveller woman with cerebral palsy, drew strong responses from its live audiences but has never been as widely discussed, presumably due to its lack of a web presence. In her performance, Mary Duffy displays herself before an audience armless and naked in the guise of Venus de Milo, breaking taboos concerning the naked body and compelling her audience to disregard social taboos concerning the regulations of staring. Duffy explains, “I have been stared at all my life, and… by my standing there stark naked and vulnerable, it feels like I am holding up a mirror to your voyeurism and saying, ‘So you want to look do you? I’ll give you something to look at’” (Duffy 183). Unlike the silent Venus, she begins a narrative of her life experience. Rosemarie Garland Thomson describes the scene: Her exhibition begins with total darkness…After an uncomfortable time, enigmatic images and a rhythmic sound float up from the darkness…The suggestion of embryonic development and fetal heartbeat eventually emerge…Suddenly, the form of Mary Duffy appears out of the darkness, spotlighted from the front against a black background. The scene dramatically obliterates all visual alternatives except Duffy’s ultrawhite form….Springing—like the mythological Venus—full blown, full-breasted, and voluptuous, this living, armless Venus silently demands that the audience stare at her…hyperbolically fusing two opposing visual discourses: staring at the freakishly different body and gazing at the female body as a sexualized aesthetic object. (Garland Thomson 2005a, 36)

Duffy’s performance as recorded in the film Vital Signs: Crip Culture Talks Back remains startling and challenging for the viewer, but, as Garland Thomson has elsewhere argued, film also acts as a “mediation” that

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changes the lived staring encounter in several ways; first, it absolves the starer of responsibility to the object of the stare; second, it eliminates the possibility of engagement between the two people in the staring relationship; third, it grants all agency to the looker and withdraws any agency from the looked upon; fourth, it renders the confrontation static. In short, virtual staring evacuates any dynamism from a lived encounter. (Garland Thomson 2005b, n.p.)

While electronic dissemination has resulted in a very wide audience for Duffy’s project, the virtual audience is more protected from a transformative encounter than in the occasion of a live performance where the dynamic relationship between subject and object remains tense and disruptive, and the live performer and live audience must be both watcher and watched in a relationship underwritten by a narrative that assumes no fourth wall. Theatre scholar Dee Heddon has expressed concerns that in an era in which “the sheer availability of mass-mediated personal narratives” has “arguably rendered the autobiographical performance an ineffective political tool…the autobiographical performance is simply one more first-persona narrative in an indistinguishable cacophony.” “Challenges to form,” she insists, must become primary with “formal experimentation grounded in the political aims of the work” (Heddon 2006, 141). By incarnating the talking Venus as metaphor, Duffy draws upon her embodied life story to engage the history of the artistic representation of women and the display of disabled women for entertainment, medical, and sexual purposes. The materialization of the metaphor thus relies upon her own body to address issues that go beyond the single life. As a kind of autobiography, this work of performance art also questions the concept of both feminine lack and disabled lack, as Duffy reshapes the inherited language that would describe and explain her life.7 Through her performances, she also replaces the notion of privacy as physical distance or restricted access to one’s body—concepts impractical for many disabled people—with the materialization of a concept of privacy as the affirmation of another’s integrity. In the United States and England, her performance art represents a continuation of the political agitprop theatre of feminist, anti-racist, and disability activism; in Ireland, there was no such context. Although the Arts Council of Ireland commissioned Duffy’s series of photographic selfportraits, “Cutting the Ties That Bind,” in 1987, the performances by

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which she became well-known as an artist took place elsewhere. The actors, writers, and directors whose observations are collected in Kate O’Reilly’s Face-On: Disability Arts in Ireland and Beyond (2007) all speak to the dearth of interest and opportunities for disability theatre of any sort in the Ireland of the later twentieth century. Several different theatre groups have evolved since then, and self-referential performance art continues as a stimulating genre for disabled artists in Ireland and in Northern Ireland, where artists like Sinéad O’Donnell are able to draw upon a British tradition of political theatre for grant funding and support. The type of self-reflexive performance art offered by Mary Duffy, Rosaleen McDonagh, and other contemporary performers comprises one of the most accessible and exciting ways to cut through more conventional selfportraitures to representations that challenge the viewer and create a generative moment for dialogue.

Conclusion Despite debilitating cuts to services in the age of the austerity budget and ongoing problems with housing, transportation, and employment, the current generation has a greater likelihood of entrance into academic programs in which their writing abilities can be honed, and their access to more prestigious publication is less remote than for prior generations. Just as the idea of what it means to be Irish has changed drastically in the past decades and the genre of the autobiography stretched its parameters with apparently limitless elasticity, so the notion of disability continues to be in flux. Self-representations of disability necessarily mirror how specific cultures enact and narrate stories. Irish disability narratives contest conservative religious interpretations of physical impairment, as well as the conventions of heroic individualism or compensatory overcoming with which their stories are sometimes framed by paratextual materials such as advertising, endorsements, and authenticating prefaces. Most demonstrate a sharp recognition of how inequalities of class and authority exacerbate and even cause impairments; with that recognition, the ethical self appears most often discovered in a sense of obligation to others. Accordingly, many of these writings identify themselves not only as expressivist and aesthetic self-representations but as testimonial documents in service to an activist principle. Liam Harte maintains that the memoirs of those outside the

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dominant narrative of Irish history “demonstrate the radical uses of autobiography by marginalized subjects whose assertion of a personal narrative voice, which also speaks beyond itself, is a compelling means of cultural inscription.” This writing, he continues, can “critique larger cultural and political forces and so reconfigure the relations between self, nation and society in counter-hegemonic ways” (Harte 2007, 12). By remaining alert to what makes a text different from broader cultural models, we may see how life writing can illuminate one of the autobiography’s most crucial acts: the refining of an ethical self who must claim its value, assert its freedom, imagine its past and future, and discover the possibilities of its own will and action.

Notes 1. Hard copies of self-published books can be expensive and difficult to find. Thus where possible, I have cited e-book versions as the most likely to be accessible. Since pagination is sometimes removed in these formats, I have included section numbers where available. Thomas Couser noted in 2009 that despite their democratic promise, “self-published texts are rarely reviewed, minimally advertised, and generally reach only minute audiences,” but they have become eminently discoverable by online bookstores and search engines. Locating books in the digital age is much less dependent than in prior years on advertising or promotion in bookstores. 2. Other self-published memoirs of which I am aware include David Boland, Life off the Tip of My Tongue (199-), Rex Lee, Melodies at Eventide (2016), and Michael McCormack, Walking on Tippy Toes (1999). 3. Herring et al. (2004) and Taylor (2011) discuss this issue in terms of gender bias, but it is easy to imagine equally dismissive judgments of personal narratives by disabled bloggers as well. 4. Julie Rak provides a helpful summary and analysis of arguments concerning the similarities and differences between paper diaries and online blogging. See Rak (2005, 167–72). 5. The interface between social media and disability is explored at length in the substantial collection of essays entitled Disability and Social Media: Global Perspectives (Ellis and Kent 2017). 6. Email to the author, 13 June 2009. 7. Ann Millet-Gallant (2010) offers a feminist reading of Mary Duff’s selfportrait photography and performance art in the context of the history of disabled women as objects of display and more contemporary presentations of self-designed and managed by disabled women themselves.

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References Banks, Joanna, Raphaele Grotti, Eamon Fahey, and Dorthy Watson. 2018. Disability and Discrimination in Ireland. Dublin: ESRI and The Irish Human Rights and Equality Commission. Boland, David. 199-. Life Off the Tip of My Tongue. Portlaoise: n.p. Brophy, Brendan. 1996. On Three Wheels. Ferbane, Co. Offaly: Brosna Press. Byrne, Suzy. Mamam Poulet. http://www.mamanpoulet.com. ———. “Speech by Suzy Byrne/Maman Poulet at NWCI Website & Care Publication Launch, 19 Oct 09.” https://www.nwci.ie/index.php/learn/article/ speech_by_suzy_byrnemaman_poulet_at_nwci_website_care_publication_ launch_19. Collison, Tommy. 2012. That’s Me. PDF Edition. https://gumroad.com/l/LirS. Couser, Thomas. 2009. Signifying Bodies: Disability in Contemporary Life Writing. Ann Arbor: University of Michigan. Curran, John. 1993. Just My Luck! Tralee, Co. Kerry: Inné Teo. ———. 2004. Tides of Change: Memories of a Kerry Childhood. Toor, Waterville, Co. Kerry: Curran. Doran, Eric. 2006. Not Going Quietly. NotGoingQuietly.com (Viewed at InternetArchive.org). Dowdall, Robert, and Emer Cleary. 2014. Beyond the Darkness. Dublin: Emu Ink. Duffy, Mary. 1997. “So You Want to Look?” In Framed: Interrogating Disability in the Media, edited by Chris Davis and Ann Pointon, 182–83. London: British Film Institute. Ellis, Katie, and Mike Kent. 2017. Disability and Social Media: Global Perspectives. London and New York: Routledge. Fitzgerald, Sarah. WobblyYummyMummy. https://wobblyyummymummy.com. Frank, Arthur. 1995. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press. Garland Thomson, Rosemarie. 2005a. “Dares to Stares: Disabled Women Performance Artists and the Dynamic of Staring.” In Bodies in Commotion: Disability and Performance, edited by Carrie Sandahl and Philip Auslannder, 30–41. Ann Arbor: University of Michigan Press. ———. 2005b. “Staring at the Other.” Disability Studies Quarterly 25 (4). http://dsq-sds.org/article/view/610/787. Gath, Leigh. 2012. Don’t Tell Me I Can’t. n.p.: Create Space Independent Publishing Platform. Kindle Edition. Harte, Liam. 2007. Modern Irish Autobiography: Self, Nation, and Society. Basingstoke and New York: Palgrave Macmillan. Heddon, Dee. 2006. “The Politics of the Personal: Autobiography in Performance.” In Feminist Futures? Theatre, Performance, Theory, edited by Elaine

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Aston and Geraldine Harris, 130–48. Basingstoke and New York: Palgrave Macmillan. Herring, Susan C., Inna Kouper, Louis Ann Scheidt, and Elijah L. Wright. 2004. “Women and Children Last: The Discursive Construction of Weblogs.” In Into the Blogosphere: Rhetoric, Community, and the Culture of Weblogs, edited by Laura Gurak, Smiljana Antonijevic, Laurie Johnson, Clancy Ratliff, and Jessica Reyman. Minneapolis: University of Minnesota. http://hdl.handle.net/ 11299/172275. Independent Living Movement Ireland. 2018. “Video Resources.” https://ilmi. ie/ilmi-video-resources. Kuusisto, Stephen. 2007. “A Roundtable on Disability Blogging.” Disability Studies Quarterly 27 (1–2): n.p. Lee, Rex. 2016. Melodies at Eventide. Dublin: The Manuscript Publisher. Lejeune, Philippe. 2000. Journal Personnel, Ordinateur, Internet. Paris: Éditions du Seuil. Lewthwaite, Sarah. 32 Days Remaining. https://slewth.wordpress.com//2011/ 02/01/who-is-researching-disability-in-facebook. Lynch, Claire. 2014. Cyber Ireland: Text, Image Culture. Basingstoke and New York: Palgrave Macmillan. ———. 2018. “Irish Life Writing in the Digital Era.” In The History of Irish Autobiography, edited by Liam Harte, 379–93. Cambridge: Cambridge University Press. McCormack, Michael. 1999. Walking on Tippy Toes. n.p.: n.p. McDonagh, Rosaleen. 2007. “Extract from Babydoll and Afterword.” In FaceOn: Disability Arts in Ireland and Beyond, edited by Kate O’Reilly, 77–87. Dublin: Arts and Disability Ireland. McNeill, Laurie. 2014. “Life Bytes: Six-word Memoir and the Exigencies of Auto/Tweetographies.” In Identity Technologies: Constructing the Self Online, edited by Anna Poletti and Julie Rak, 144–66. Madison: University of Wisconsin Press. Millett-Gallant, Ann. 2010. The Disabled Body in Contemporary Art. Basingstoke and New York: Palgrave Macmillan. Mitchell, David T., and Sharon L. Snyder. 2000 [1995]. Vital Signs: Crip Culture Talks Back. Director’s Cut. Brooklyn: Fanlight Productions. O’Reilly, Kate, ed. 2007. Face-On: Disability Arts in Ireland and Beyond. Dublin: Arts and Disability Ireland. Rak, Julie. 2005. “The Digital Queer: Weblogs and Internet Identity.” Biography 28 (1): 166–82. Sorapure, Madeleine. 2003. “Screening Moments, Scrolling Lives: Diary Writing on the Web.” Biography 26 (1): 1–23.

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Taylor, Anthea. 2011. Single Women in Popular Culture: The Limits of Postfeminism. Basingstoke and New York: Palgrave Macmillan. Van Eeckhoutte, Willeke. Ireland, Multiple Sclerosis, and Me. https://irelandms. com/2018/04/25/3443-needles.

Index

A Alphen, Ernst van, 55–56, 133 Autobiography and collective voice, 78–79, 111–113, 116–117 as genre, 4–7, 23, 33, 73–74, 85–87, 98–100 assisted or collaborative, 9, 38, 77, 95–97, 117–124 Autofiction, 28–33, 73–105 as genre, 6, 73–74, 83–85, 98, 99–100

B Beckett, Samuel, 5, 101 Blindness in Ireland, 23–40, 143–145 and labor movement, 24, 41 association with British colonization, 25 dispensary health care system, 26, 29, 41, 64–65

institutions and schools, 26, 37, 39, 41, 42, 48, 53, 58–61, 68, 114, 141, 146 organizations, 24, 34, 39–40, 41, 143–144 Bloggers Byrne, Suzy, 147, 148–149 Doran, Eric, 139–156 Fitzgerald, Sarah, 147, 156–159 Van Eeckhoutte, Willeke, 153 Blogging, 139, 146–159 as private and public text, 146–149, 152–154, 158–159 blogging communities, 146–147, 148–150 compared to diary and message boards, 147, 149–151, 156, 163 limitations, 151–152, 153–154 structure, 146–147, 150–153, 154–157 Bollard, Joe, 14, 25–26, 33–40, 42, 60–61, 64

© The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2020 E. Grubgeld, Disability and Life Writing in Post-Independence Ireland, Literary Disability Studies, https://doi.org/10.1007/978-3-030-37246-0

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INDEX

Bolt, David, 38, 41, 43 Brown, Christy, 14, 15, 73–93, 103, 105, 118

C Catholic Church, 13, 15–16, 34–37, 48, 57–59, 83, 120–129, 140. See also Disability, and religion; Irish autobiography, and religion Class, 23–40 and access to publication, 139, 148–149, 151–152 and access to services, 24, 26, 33–39, 47–49, 58, 64–65, 68, 74–76, 87–88, 91, 93, 116, 128, 146 definition, 36–37 relation to consciousness, 35–37, 40, 85–87, 105, 116, 128–129 relation to institutions, 26, 34–36, 47–49, 53, 57–58, 64–65, 68, 74–76, 146 relation to nationalism, 14, 24, 28–29, 41, 87, 128–129 Cleary, Joe, 23, 63 Commission to Inquire into Child Abuse (Ryan Commission), 16, 50, 53, 65, 67, 131–134, 136 Coogan, Tom, 77–78, 85–87, 97, 107 Couser, G. Thomas, 4, 5, 9, 74, 88, 96, 118, 119, 131, 163 Cronin, Michael, 69

D Davidson, Michael, 97, 106 Davis, Lennard, 11 Disability and mobility, 62–64, 66, 69, 144 and religion, 15, 35, 57, 104, 115, 120–121, 128–129. See

also Catholic Church; Irish autobiography, and religion and sexuality, 38, 39, 43, 88–91, 106 definitions, 10–12, 18, 39, 61–62 Disability and narrative conventions and self-publication, 140 and style, 86, 89–93, 95–98, 99–101, 106 authenticating documents, 9, 140 exceptionalism, 9–10, 28–32, 47, 78–79, 112, 116, 120, 123–124. See also Sports autobiography metaphor, 2–4, 18, 27–28, 38, 41, 45, 83, 97, 100–101, 120, 121, 123, 126–127, 130–131, 135, 161 narrative patterns, 7–10, 28, 37–38, 78, 88, 92, 98, 122, 125–126, 130–131, 139, 162–163 non-disabled salvationary figures, 75, 78, 80–81 Doyle, Paddy, 16, 49–57, 111 Duffy, Mary, 159, 160–163 E Eakin, Paul John, 5, 10, 52, 69, 131 Eisland, Nancy, 15 Ethnography and oral history, 39–40, 42, 126–127, 129–134 F Forde, Mossie, 9, 14, 64–67, 140 Fordham, John, 28, 37 Frank, Arthur, 7–9, 12, 46, 112, 125, 156 G Garland Thomson, Rosemarie, 52, 122, 160, 161

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Gilmore, Leigh, 18, 84, 98 Goffman, Erving, 94 Gray, Janet, 118–124, 128, 135, 141

Lejeune, Philippe, 6, 152 Lloyd, David, 41 Lynch, Claire, 13, 77, 83, 149, 151

H Harte, Liam, 12–13, 18, 162 Holmes, Martha Stoddard, 3, 32 and Tod Chambers, 32

M McDonagh, Rosaleen, 160, 162 McDonnell, Patrick, 18, 48, 116 McRuer, Robert, 8 McWhorter, Ladelle, 16–17 Mintz, Susannah, 15 Mitchell, David T., 10, 11, 48, 112, 160. See also Snyder, Sharon L.

I Independent living, 47, 56–67, 130 Irish Autobiography, 1, 12–15, 17, 33, 57, 85–86, 128–129, 154 and national story, 1–2, 12–14, 15, 17, 28–29, 35, 41, 49, 63–64, 83, 128–129 and religion, 15–16, 58–59, 83, 128–129. See also Catholic Church; Disability, and religion characteristics, 1–2, 12–16, 23 contrast with disability narratives, 12, 13–15, 17, 24, 26, 35, 83, 153

J Johnson, Merri Lisa, 8 Joyce, James, 27, 85, 98

K Kenny, Desmond, 3–4, 42 Kleege, Georgina, 31, 39 Kristeva, Julia, 51–53 Kuusisto, Stephen, 148–149

L Lane, David, 14, 57–60, 64, 68, 69, 75, 140, 148 Laub, Dori, 134

N Nolan, Christopher, 73, 92–98, 111, 118

O O’Casey, Sean, 6, 14, 25, 26–33, 41, 106 O’Connell, Noel, 45, 53, 57, 61 Olney, James, 5

P Pain, 12–33, 91–92, 100, 113, 114–115, 125–127. See also Sports autobiography Parker, Stewart, 73, 98–105 Peers, Danielle, 112, 116 Performance art, 159–162, 163 Pierse, Michael, 36, 37, 84–86

R Rak, Julie, 148, 149, 163 Reihill, Dorine, 124–129, 135 Reiss, Matthais, 41 Residential institutions, 17, 45–67, 75–76, 131, 140

170

INDEX

history and policies, 47–49, 67, 75–76 Rodas, Julia Miele, 27 S Scarry, Elaine, 31, 92 Self-publishing memoirists, 139–146. See also Forde, Mossie Brophy, Brendan, 142–143 Collison, Tommy, 145–146, 148–150 Curran, John, 9, 14, 140–141 Dowdall, Robert, 143–145 Gath, Leigh, 141 Shakespeare, Tom, 11, 63 Siebers, Tobin, 10–12, 97, 106 Smith, Brett, 127, 131, 135 Smith, Sidonie, 30, 50 Snyder, Sharon L., 11, 48, 160. See also Mitchell, David T. Sontag, Susan, 2–3, 126 Sorapure, Madeleine, 150, 154–155 Sparkes, Andrew C., 127, 131, 135 Sports autobiography, 113–134 and genre constraints, 112–113, 117, 119–121 normalization and exceptionalism, 112–117, 122–123

see also Autobiography, and collective voice; Disability and narrative conventions; Pain T Testimony, 4, 5, 13, 23, 45–60, 65, 91, 129–134 as life narrative, 9, 18, 47–48, 133–134 purpose, 50, 67, 133 see also Commission to Inquire into Child Abuse; Residential institutions; Trauma Thompson, E.P., 36, 37 Trauma, 50–56, 61 abjection, 51–56, 101–103, 134 and Northern Ireland, 46, 67 narrative structure, 46–47, 62 relation to speech, 46–47, 131–134 see also Commission to Inquire into Child Abuse; Residential institutions; Testimony Tynan, Ronan, 113, 120–122, 127–128 W Watson, Julia, 30, 50