Hoop Dreams on Wheels:: Disability and the Competitive Wheelchair Athlete (Contemporary Sociological Perspectives)

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Hoop Dreams on Wheels

Hoop Dreams on Wheels is written in an accessible story-telling style, as it is intended to be read by a general audience as well as by students in college courses on disability, sports, the body, and social problems. The main component of the book, the life histories of the players, will be especially appealing to students, who will find these accounts useful as a way to develop their sociological imagination, that is, an understanding of the interrelationship between biography and history in society and the ways in which personal troubles are related to public issues. By linking personal stories to collective narratives, the life histories reveal the world of ordinary people’s “problematic lived experience,” to quote Norman Denzin, and show how society “speaks itself ” through the lives of individuals. Additionally, the book is of interest to scholars in the sociology of disability, sociology of sports, sociology of the body, life-history researchers, and professionals in the fields of therapeutic recreation and rehabilitative counseling. Ronald J. Berger is Professor and Chair of the Department of Sociology, Anthropology, and Criminal Justice at the University of WisconsinWhitewater.

Frontispiece National Wheelchair Basketball Association (NWBA) Collegiate Championship Trophy. Courtesy of Gregg Theune, University of Wisconsin-Whitewater (UWW).

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Hoop Dreams on Wheels Disability and the Competitive Wheelchair Athlete

Ronald J. Berger University of Wisconsin-Whitewater

First published 2009 by Routledge 270 Madison Ave, New York, NY 10016 Simultaneously published in the UK by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN Routledge is an imprint of the Taylor & Francis Group, an informa business

This edition published in the Taylor & Francis e-Library, 2008. “To purchase your own copy of this or any of Taylor & Francis or Routledge’s collection of thousands of eBooks please go to www.eBookstore.tandf.co.uk.” © 2009 Taylor & Francis All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark Notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. Library of Congress Cataloging in Publication Data A catalog record has been requested for this book Library of Congress Cataloging-in-Publication Data Berger, Ronald J. Hoop dreams on wheels: disability and the competitive wheelchair athlete/Ronald J. Berger. p. cm. Includes bibliographical references and index. 1. Wheelchair basketball—United States. 2. Sports for people with disabilities. 3. Athletes with disabilities—Biography. 4. People with disabilities—United States—Biography. I. Title. GV886.5.B47 2009 796.323
8—dc22 2008010897

ISBN 0-203-89132-5 Master e-book ISBN

ISBN10: 0–415–96510–1 (hbk) ISBN10: 0–415–96509–8 (pbk) ISBN10: 0–203–89132–5 (ebk) ISBN13: 978–0–415–96510–1 (hbk) ISBN13: 978–0–415–96509–5 (pbk) ISBN13: 978–0–203–89132–2 (ebk)

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For Sarah

Contemporary Sociological Perspectives Edited by Valerie Jenness, University of California, Irvine and Jodi O’Brien, Seattle University

This innovative series is for all readers interested in books that provide frameworks for making sense of the complexities of contemporary social life. Each of the books in this series uses a sociological lens to provide current critical and analytical perspectives on significant social issues, patterns and trends. The series consists of books that integrate the best ideas in sociological thought with an aim toward public education and engagement. These books are designed for use in the classroom as well as for scholars and socially curious general readers.

Published: Political Justice and Religious Values by Charles F. Andrain GIS and Spatial Analysis for the Social Sciences by Robert Nash Parker and Emily K. Asencio

Forthcoming: The Internet and Inequality by James C. Witte Media and Middle Class Moms by Lara Descartes and Conrad Kottak Sociology of Music by Michael B. MacDonald Race, Justice and the New Genetics by Sandra Soo-Jin Lee Watching T.V. Is Not Required by Bernard McGrane and John Gunderson Intimate Impostors: The Social Psychology of Romantic Deception by Sally Caldwell Regression Unplugged by Sally Caldwell and Robert Abbey Violence Against Women by Douglas Brownridge Gender Circuits by Eve Shapiro

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Contents

List of illustrations Series Editor’s Foreword Preface Part I 1 2 3

Disability in Society Disability, Sports, and Basketball A Case Study of Competitive Wheelchair Athletics

Part II 4 5 6 7

Life Histories of Wheelchair-Basketball Players

The First Generation The Second Generation The Third Generation The Fourth Generation

Part III 8 9

Disability, Sports, and Society

Sociological Themes: The Collective Narrative

ix xi xiii 1 3 19 29 41 43 63 83 97 119

Living With Disabilities: Pathways to Wheelchair Sports Competitive Sports and the Dilemmas of Disability Identity

121 131

Notes References Index

147 151 159

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Illustrations

Frontispiece National Wheelchair Basketball Association (NWBA) Collegiate Championship Trophy 1.1 1.2 3.1

4.1 4.2 4.3 5.1 5.2 5.3 5.4 6.1 6.2

Jeremy (Opie) Lade at the 2006 Gold Cup in Amsterdam Opie at the 2006 Gold Cup Coach Tracy Chenowyth with the University of Wisconsin-Whitewater (UWW) men’s wheelchair-basketball team (2006) Melvin Juette taking a shot at the 2001 NWBA United States Basketball Festival in Whitewater, Wisconsin Eric Barber taking a fall at the 2002 NWBA Wheelchair Basketball Tournament in Champaign, Illinois Mike Frogley, Melvin Juette, Jeremy (Opie) Lade, and Eric Barber at a NWBA tournament banquet (2005) Matt Glowacki climbing the side of a cliff at Devil’s Lake, Wisconsin Joe Johnson at the 2006 Gold Cup in Amsterdam Joe at the 2006 Gold Cup in Amsterdam Amy Bleile and Dan Ferreira at a UWW wheelchair-basketball game (2007) Jeremy (Opie) Lade scrimmaging with teammates at UWW (2004) Christina Ripp at the 2006 Gold Cup in Amsterdam

ii

4 5

38 50 55 61 67 71 72 80 87 91

x • Illustrations

6.3 6.4 7.1 7.2 7.3 7.4 7.5 7.6 7.7 9.1

Christina at the 2004 Roosevelt World Basketball Challenge in Warm Springs, Georgia UWW wheelchair-basketball team (2002) Jeremy Campbell with the UWW team (2006) Jeremy and teammates Justin South and Zac Nieman display their UWW tattoos (2004) Matt Scott at the 2006 Gold Cup in Amsterdam Matt with the UWW team (2006) Joe Chambers and Jeremy Campbell reaching for the ball at a UWW game (2006) Joe at the 2006 Gold Cup in Amsterdam Joe at the 2006 Gold Cup in Amsterdam Mike Frogley coached the University of Illinois women’s basketball team to its ninth NWBA Women’s Division Championship in 2002

92 95 100 101 108 109 114 115 116

137

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Series Editor’s Foreword

Hoop Dreams on Wheels provides an interesting sociological account of the real-life drama in the lives of wheelchair athletes. Situating these lives firmly in a larger interactional, cultural, and structural context, the strength of this book is first and foremost the detailed presentation of entrenched social relations that simultaneously result in social exclusion and social inclusion for wheelchair athletes. Ronald Berger presents rich data in the form of stories of the lives, struggles, and accomplishments of four generations of competitive wheelchair athletes. The lives and experiences presented in Hoop Dreams on Wheels constitute compelling instances of “sociological provocation.” That is, you can see society at work in the pages of stories about their lives. In addition to learning that a wheelchair athlete beat Michael Jordan in a game of one-on-one, readers will come away from the book understanding how wheelchair athletes occupy different locations— from being seen as “snotty and stuck up” to being seen as a “supercrip”— in a larger stratification order that has the capacity to both confine and liberate people with disabilities. The lessons in Hoop Dreams on Wheels are, in the first instance, about the management of disability in competitive sport in particular and modern society more generally. Moving beyond disabilities studies, however, this book presents lessons related to more general concerns about socialization, interaction, and social structure. By putting all of these lessons in a generational framework, Berger successfully highlights continuities with the past and points to prospects for change in the future. Valerie Jenness, July 2008

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Preface

I have been steeped in the subject of wheelchair basketball for some time, and I am pleased to have the opportunity to share the stories I have gathered and my thoughts about disability, sports, and identity. Hoop Dreams on Wheels is built around sixteen in-depth interviews I conducted with a group of individuals who are associated with the University of WisconsinWhitewater (UWW), the campus where I work, who are passionate about the game of wheelchair basketball. The book is an exercise in what C. Wright Mills (1959) famously called the sociological imagination, as it grapples with the intersection of biography and history in society and the ways in which personal troubles are related to public issues. It is intended to be read by a general audience as well as by students in college courses on disability, sports, the body, social problems, deviance, medical sociology and medical anthropology, and introductory sociology. It also will be of interest to scholars in the sociology of disability, the sociology of sports, the sociology of the body, and the medical humanities, as well as life-history researchers and professionals in the fields of physical education, therapeutic recreation, and rehabilitative counseling. Part I, “Disability, Sports, and Society,” situates the study of competitive wheelchair athletics in broader context by providing background in the history and sociology of disability and disability sports. It also introduces the life-history method and interview participants, and documents the development and evolution of the UWW wheelchair-basketball program. Part II, “Life Histories of Wheelchair-Basketball Players,” tells the individual stories of four generations of UWW players, quoting generously from the interviews but also framing the narrative in terms of the dynamic

xiv • Preface

interplay between social structure and personal agency, the two foundational categories of generalized sociological discourse. In Part III, I explore the sociological themes further by narrating the collective experience that is expressed through the lives of the players, highlighting the formative interpersonal and institutional influences on their lives and the pathways they took to wheelchair sports. I also examine social divisions within the disability community that have called into question the value of competitive wheelchair athletics, and I explore some of the complexities of disability identity in contemporary society. There are, as always, many people to thank for the success of a project such as this. Most central, of course, are the participants in the study—Eric Barber, Amy Bleile, Jeremy Campbell, Joe Chambers, Tracy Chenowyth, Dan Ferreira, Jon Fraser, Mike Frogley, Matt Glowacki, Melvin Juette, Joe Johnson, Jeremy Lade, Mike Lenser, Christina Ripp, Matt Scott, and John Truesdale—who shared their life stories with me and who enriched my life in the process. I am particularly appreciative of Tracy Chenowyth and Mike Frogley, who answered so many questions I had along the way. Thanks are due as well to Kent Sandstrom, Carol Brooks Gardner, Val Jenness, Ruthy Berger, and especially to Steve Rutter, my editor at Routledge, for their valuable feedback on the manuscript. Steve signed me to my first book contract some thirty years ago, and it is a pleasure to be reunited with him again to publish this book. I also thank Gregg Theune, Brenda Martin, and Mieko Yokoi-Shelton for their help with the selection and preparation of the photos; and Siân Findlay, Liz O’Donnell, and the staff at Routledge for their fine work bringing the manuscript to publication.

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PART

I

Disability, Sports, and Society

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CHAPTER

1

Disability in Society

The score was tied as the red-haired youth received the inbound pass with just 4.5 seconds to play. Jeremy Lade, or Opie as his teammates and friends call him, because of his resemblance to Opie Taylor of The Andy Griffith Show,1 pushed his way to the top of the key, 20 feet from the basket. Guarded by two opposing players, he threw up a shot. The buzzer went off as the ball soared through the air and banked off the glass and through the hoop. Pandemonium broke out in the gym. Teammates and fans rushed onto the floor and mobbed the game’s hero. The year was 2003, and the Rolling Warhawks of the University of Wisconsin-Whitewater (UWW) had won their fourth intercollegiate national basketball championship. For a moment, those of us sitting in the stands forgot we were watching a game of wheelchair basketball. It was basketball pure and simple. No stigma or pity often associated with people in wheelchairs, those who are part of the broad category of people now commonly known as “people with disabilities.” When we regained our composure, many of us wondered why we had not seen more of this on ESPN or other sports channels. After all, are billiards or poker or hotdog-eating contests more entertaining as “sport” than wheelchair basketball? Even those who love the game of basketball (see Trudell 1996; Wideman 2001) may not appreciate the special skills that are part of the wheelchair game, especially one played by elite players like Opie. But over the years, as I have attended more and more games and have spoken with numerous spectators, I have found myself and others truly impressed with the level of skill and athleticism exhibited by the players. We all understood how

4 • Disability

difficult it is to shoot the ball into a 10-foot high basket from the threepoint line, the free-throw line, or even closer, while sitting in a chair. We appreciated the manner in which the players seem to effortlessly maneuver their chairs with such speed and agility, maintaining their stamina for the duration of the game. And we were no longer surprised by the physical contact, as we have watched chairs banging against chairs, tipping over as players fall to the ground, then pull themselves up without assistance from others. As a sociologist, the entire scene has struck me as one that disrupts

Figure 1.1 Jeremy (Opie) Lade at the 2006 Gold Cup in Amsterdam. Courtesy of the Organizing Committee of the Gold Cup 2006.

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conventional assumptions of what a disabled body can do, scrambles the categories of ability and disability, makes me think of the sport as a “performance region” that could potentially alter the public’s perception about people with disabilities (see Benford and Hunt 1992: 38). At first glance, UWW would seem a rather unlikely place for a premier wheelchair-basketball program. Perhaps this says something about the marginal nature of the sport that one of the best programs in the world is located in this small college town in southeastern Wisconsin. But it is

Figure 1.2 Opie at the 2006 Gold Cup. Courtesy of the Organizing Committee of the Gold Cup 2006.

6 • Disability

indeed here that some of the best young players now flock—from all over the United States and Canada and as far as Australia, Germany, Ireland, and Israel—to hone their skills and to bring their game to a higher level. Many of the best players and coaches in the game, those who have been members of their respective national teams, have passed through this institution. In 2006, half of the twelve-member US team that competed in the international Gold Cup held in Amsterdam consisted of former or current UWW players. Hoop Dreams on Wheels reports on the results of in-depth interviews I have conducted with a group of individuals I have had the pleasure to know who have been (or are currently) associated with the UWW wheelchairbasketball program. They include both elite athletes and nonelite athletes as well as coaches and a physical therapist/athletic trainer. Among them are those who have congenital disabilities and acquired disabilities. Their life histories, which are told and analyzed later in this book, are about their hopes and dreams, their struggles and triumphs. These stories, and others like them, can teach us a good deal not only about disability issues but, more generally, about the place of the individual in society and the ways in which personal troubles can be understood as public issues, which, as C. Wright Mills (1959) observed, is the essence of the “sociological imagination.”

Entering a New Social World Michelle Fine and Lois Weis believe that sociologists engaged in qualitative inquiry should be explicit about what motivates their study, about “why we interrogate as we do” and why we choose to “train our scholarly gaze” on some subjects and not others (2002: 284; see also Berger and Quinney 2005; Denzin 1997; Frank 2000). My interest in wheelchair basketball as an object of inquiry emerged somewhat serendipitously. I was teaching a criminology course in which we were reading an autobiography of a gang member. Amy Bleile, a student with cerebral palsy, told me about a young man who had been shot in a gang dispute and paralyzed when he was sixteen years old. Amy asked if I would like her to invite him to speak to the class. This man, Melvin Juette, was a former student who had taken my course several years earlier. At that earlier time, we had rarely spoken, and he would not have stood out in my mind had he not been one of the relatively few black students in my classes and one of even fewer black students who used a wheelchair. Melvin agreed to be a guest speaker, and it was only then that I learned about his involvement in—indeed, his passion for—wheelchair basketball. It also was then that I first learned about the UWW wheelchair-basketball team, something that had previously been off my radar screen. Coincidence

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would have it that I had an emerging interest in disability issues, for my daughter had recently been diagnosed with cerebral palsy, and I was seeking the counsel of those who had experience living with a disability. Thus, the personal and professional merged for me as the project that led to this book and other scholarly work on the subject began to unfold (see Berger 2004, 2005, 2008a, 2008b; Juette and Berger 2008). As I embarked on this study, I was rather naive about the contentious terrain I was entering. I was unaware that some activists and academics with disabilities would view an able-bodied scholar like myself suspiciously, asking “What are you doing here?” (Branfield 1998; Charlton 1998). Indeed, this feeling of intrusion was first brought home to me when I attended a session on disability at a conference of the Midwest Sociological Society (MSS) in 2002, which was moderated by an adamant and charismatic woman who uses a power wheelchair. The basic thrust of the session was the oppression of people with disabilities who were portrayed as victims struggling to get by, struggling to make ends meet in the midst of a thoroughly discriminatory social order. In the discussion that followed the presentation of the papers, I asked the panelists about the “supercrip” critique that I had come across in the disability-studies literature and its implications for my study of wheelchair basketball (Berger 2004).2 The media’s (and by inference my own) preoccupation with the supercrip often provokes complaints from the disability community and those who write about disability issues. Supercrips are those individuals whose inspirational stories of courage, dedication, and hard work prove that it can be done, that one can defy the odds and accomplish the impossible. The concern is that these stories of success will foster unrealistic expectations about what people with disabilities can achieve, what they should be able to achieve, if only they tried hard enough. According to critics, the supercrip mystique encourages the public to adopt “self-made man” and “blaming-the-victim” ideologies (see Ryan 1971) that work against progressive social change for people with disabilities (Duncan 2001; Hardin and Hardin 2004; Hockenberry 1995; Schell and Rodriguez 2001; Shapiro 1993; Wendell 1996). The MSS panelists to whom I addressed my question seemed unanimous in their view that a study of competitive wheelchair-basketball players would be of little relevance to people with disabilities. “Why are you interested in these athletes?” I was asked. “What are you doing here?” At first, this reaction struck me as odd given the nature of the impairments of the people I had interviewed or was planning to interview (see Table 3.1). Moreover, I was treated rudely by the moderator, who ignored my attempts to participate in the discussion. After the session was over, however, she and I talked further, and I disclosed that I had a daughter with cerebral palsy. We began to reach a meeting of the minds, and

8 • Disability

gradually she accepted my interest as legitimate and authentic. A little bit of self-disclosure goes a long way. Over time, Jeanie Akamanti and I became friends. Later, Jeanie wrote an essay about our experience in which she recalled our initial encounter: I was stunned and offended when a (seemingly) able-bodied member of the audience had the audacity to reflect on the disability experience! Worse yet he was talking about disabled athletes. . . . At the time, I had no idea what a disservice I had done [by] seeing and reacting to him as an outsider, . . . perpetuat[ing] the same discrimination and exclusion . . . that separated and isolated me. (Akamanti 2004: 15) In her essay, Jeanie also wrote that she has come to see me as “wise” in the sense that Erving Goffman meant when he wrote about persons who appear “normal but whose special situation had made them intimately privy to the . . . life of the stigmatized individual and sympathetic with it, who find themselves accorded a measure of acceptance . . . in the clan” (1963: 28). As my research progressed and I read further in the disability-studies literature, I was pleased to come across other welcoming voices (Darling 2000; Duckett 1998). Robert Kitchin (2000) wrote that he thought it was unwise to leave the field in the hands of a small cadre of academics with disabilities who may have a professional agenda of their own that does not represent the interests of the diverse constituency of the disabled. This field of inquiry should be open to all. All that should be asked is that scholars approach their topic from a “disabled-friendly” point of view (2000: 36)— that they are able to empathize with people with disabilities, not misrepresent their experiences, and use their research to advance the principle of equality for all. With this in mind, I have viewed the interviews I have conducted as “a joint production” of researcher and participants involved in a mutual sharing of our experience of living with disability (Neuman 2003: 390). My aim has been to tap into the tacit knowledge available to insiders of this social milieu, to learn from them rather than to study them, and to provide “thick descriptions” of the life worlds in which they are embedded (Gertz 1973; Johnson 2002; Spradley 1979). The remainder of this chapter situates the study of wheelchair athletics in broader context, providing a brief history of disability as a social construction and introducing conceptual issues that will enhance readers’ understanding of the relationship between disability and society. Chapter 2 provides additional background on disability and sports, and Chapter 3 introduces the study that is the focus of the book. Part II includes the

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storied narratives of the players’ life histories, and Part III considers sociological themes pertaining to disability and sports that I derived from the interview data.

The Social Construction of Disability: A Brief History Disability is a universal phenomenon that has been prevalent throughout the history of human societies, from small-scale, preliterate communities to complex nations such as the United States. However, sociologists and other disability-studies scholars conceptualize disability not as a condition of the individual but as a social construction, that is, as a product of social definition and the social organization of society. In doing so, they make a distinction between impairment and disability. An impairment is a biological condition that entails the loss of physical or cognitive function, while a disability is an inability to perform a personal or socially necessary task because of that impairment. Thus, for example, an individual who relies on a wheelchair for mobility due to a physical impairment may only be socially disabled if the buildings to which he or she requires access are architecturally inaccessible. Otherwise, there is nothing inherent in the impairment that would prevent him or her from participating fully in the educational, occupational, and other institutional activities of society. However, societies have not always been accommodating to people with physical and cognitive impairments. In fact, most often they have not, and thus people with socially constructed disabilities have been stigmatized, marginalized, and otherwise socially disadvantaged due to their impairments (Davis 2002; Ingstad and Whyte 1995; Linton 1998; Shakespeare 2006; Wendell 1996). Pre-Modern Societies Historically, attitudes toward people with disabilities have been shrouded in mythology and bigotry, often of a religious or quasi-religious nature (Braddock and Parish 2001; Winzer 1997). In some preliterate societies, for instance, people with disabilities were the victims of infanticide. Among some African tribes, the common justification for infanticide was the belief that a disabled infant represented an evil spirit, “perhaps the offspring of a human mother and a supernatural being,” or that it was divine punishment for parental misconduct (Scheer and Groce 1988: 28). The Dogu believed that women who copulated with a bush spirit gave birth to disabled infants. The Bantu believed that “mothers who engaged in incestuous sexual unions with kinsmen” gave birth to disabled children (1988: 28). The Neur believed that a disabled infant represented “a hippopotamus that had been mistakenly born to human parents,” and they thus returned the child to its proper place “by throwing it into the river” (1988: 28).

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Among the Punan Bah of Malaysia, the body of a newborn child was considered to be little more than a physical shell, not yet human (Nicolaisen 1995). The child only became human when an ancestor spirit took possession of the body, and a severe physical deformity was attributed to the bodily presence of a nonhuman spirit. At the same time, the Punan Bah did not consider people who were blind, deaf, or who limped to be nonhuman. In Punan Bah society, the father was blamed for his child’s impairment, except in the case of blindness, which was blamed on the mother. “If she allow[ed] her husband or any other man to have intercourse with her during pregnancy,” the eyes of the child were believed to be damaged by the “man’s sword” (Nicolaisen 1995: 42). Whether parents were blamed depended on the reaction of the community. For example, a young man was blamed by his in-laws for the spastic muscles of his son, which first manifested itself by the child’s inability to hold his head upright. The condition was attributed to the fact that the father “had killed a tortoise by cutting off its head during his wife’s pregnancy” (1995: 43).3 In the ancient Greek city-state of Sparta, a baby born with an obvious physical deformity was required by law to be killed in order to mollify angry gods whom the parents had apparently displeased. On the other hand, infants with hearing and visual impairments and mental retardation were not generally viewed as “deformed,” especially when the impairment did not become manifest until later in life. Moreover, public assistance was available for individuals whose impairment precluded them from working, especially for those who sustained injuries on the battlefield (Braddock and Parish 2001; Winzer 1997). Paradoxical attitudes toward people with disabilities can be found in the Bible. The Old Testament, for instance, encouraged benevolence toward people with disabilities while also characterizing their impairments as a punishment from God. Thus, Leviticus exhorts, “Thou shalt not curse the deaf nor put a stumbling block before the blind, nor maketh the blind to wander out of the path,” while Deuteronomy warns, “If you do not carefully follow His commands and decrees . . . all these curses will come upon you and overtake you: the Lord will afflict you with madness, blindness and confusion of mind. At midday, you will grope around like a blind man in the dark” (cited in Braddock and Parish 2001: 14). In the New Testament, on the other hand, stories of Jesus’s healing of the sick and disabled have been interpreted by Christians to mean that such people exist to reveal the power of God. In John’s Gospel, for example, Jesus is asked whether a man’s blindness had been caused by his sinfulness or the sinfulness of his parents. Jesus replied that it was neither but rather a mechanism for God’s work to be revealed in him. In Europe during the Middle Ages, cognitive impairments, epilepsy, and deafness were often attributed to demonic possession, and “witches” were

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burned at the stake for such reasons (Braddock and Parish 2001; Winzer 1997).4 However, there also were emerging institutional supports for the disabled, such as “monastically inspired hospices” for the blind and mentally ill, which reflected a more compassionate attitude, albeit one that kept the disabled cloistered and segregated from the general society (Braddock and Parish 2001: 17). During this period, the relationship between poverty and disability also became more salient. The existence of poverty was considered “part of the natural order, and the poor were perceived as offering opportunities for wealthier citizens to do ‘good works’ by providing alms” (2001: 19). At that time, begging by people with disabilities was not stigmatized or criminalized, as it later was, and there were even “guilds and brotherhoods of blind beggars [who] organized to address issues of competition” among them (2001: 20).

The Uneven March of Progress The Enlightenment, or Age of Reason, was a seventeenth-century philosophical movement that sought to replace a supernatural understanding of the world based on superstition and faith with a more scientific view based on evidence and reason (Braddock and Parish 2001). This movement laid the groundwork for a medical approach to disability that attempts to ascertain scientific causes and to implement appropriate treatments or remedies. Pre-Enlightenment physicians had already made primitive efforts to administer medical treatment (Braddock and Parish 2001; Winzer 1997). For instance, physicians bore holes in the heads of the mentally ill in order to release the stones or black bile that they thought were causing the illness. One treatment of deafness consisted of frying earthworms with goose grease and dropping the solution into the ears. As bizarre and unscientific as these methods seem today, they were the rudimentary beginnings of what has been called the “medical model” of disability (Shakespeare 2006; Williams 2001), which, in the contemporary era, has led to remarkable progress in our understanding of the etiology, diagnosis, and treatment of physical and cognitive impairments. The Enlightenment also encouraged a more charitable orientation toward people with disabilities and a view that they were educable. European and Turkish monks are credited with first undertaking the education of the deaf, which began in Spain as early as the sixteenth century. Initially, this education involved training in sign language or “manualism.” Over time, proponents of manualism were at odds with proponents of “oralism,” which entailed the belief that verbal articulation was necessary for deaf people to be educated and to achieve social acceptance. During this era, the education of the blind was also undertaken. Louis Braille, a Frenchman, is of course well known for developing a system of raised dots that enabled

12 • Disability

blind people to read. In the United States, by the nineteenth century, specialized residential schools for deaf and blind students staffed by a growing cadre of professional disability educators expanded rapidly. But while progress was being made in efforts to educate people with disabilities, many of these facilities evolved from well-intentioned training schools into mere custodial asylums. All too often, people with disabilities, both physical and cognitive, were segregated along with orphans, the elderly, and the poor in almshouses or other institutions, which were caretaking facilities at best and prison-like warehouses at worst (Baynton 2006; Braddock and Parish 2001; Herman 1998). An important regressive element of the gradual march of progress was the emergence of eugenics. Eugenics, which means “well born” or “good genes,” was a social philosophy that advocated public intervention to regulate the genetic composition of the population by encouraging the breeding of parents thought to possess “good genes” and by discouraging the breeding of parents thought to possess “bad genes.” One of the initial targets of eugenics policies in the United States were European immigrants, who, just prior to World War I, were forced by the US Government to take intelligence (IQ) tests upon arrival at US ports of entry. Some of these immigrants were denied admission because of “intellectual disabilities” and forced to return to their country of origin. Some physicians sympathetic to eugenics refused to administer life-saving treatments to infants born with disabilities or birth defects, hence facilitating their deaths. Involuntary sterilization of institutional residents with cognitive impairments also was commonplace in some states, a practice that was upheld in the US Supreme Court decision of Buck v. Bell in 1927. Thousands were sterilized in a practice that continued through mid-century (Braddock and Parish 2001; Davis 2002, 2006a). The eugenics movement reached its zenith in Nazi Germany, when tens of thousands of people with disabilities were sterilized and a quarter million gassed with the full cooperation of the medical establishment. The Nazis cited the American practice of sterilization as a justification: “What we racial hygienists promote is not all new or unheard of. In a cultured nation of the first order, in the United States of America, that which we strive toward was introduced and tested long ago” (cited in Rubenstein and Roth 1987: 141). Another regressive development in the march of progress was the socalled “freak show,” which reached its heyday in Europe in the nineteenth century and lasted in the United States until the 1940s. Freak shows featured people with an assortment of physical disabilities, deformities, and other oddities—such as people without arms or legs (or both), midgets and giants, Siamese twins and bearded ladies—along with so-called tribal nonwhite “cannibals” and “savages.” This cast of characters was displayed for

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public amusement and entertainment along with sword swallowers, snake charmers, and the full-bodied tattooed. The “exhibits were extremely popular at circuses, fairs, and exhibitions,” and some even took the form of museums (Braddock and Parish 2001: 37). The “attractions” at these shows were often sold to entertainment entrepreneurs “who maintained the right to display them for the duration of their lives” (2001: 38). Freak-show entrepreneurs often fabricated exotic tales of “wild and far-flung origins of the people who were exhibited” (2001: 38). As a social institution, the freak show helped reinforce onlookers’ sense of their own normality and superiority and helped construct disability as the ultimate form of deviance (Bogdan 1988; Davis 2002; Howell and Ford 2001; Thomson 1997). In the first half of the twentieth century, public sympathy for the plight of the disabled veterans of World War I and World War II arguably contributed as much as anything to more enlightened attitudes toward people with disabilities and the expansion of social assistance programs for them, including the burgeoning field of “therapeutic recreation” (DePauw and Gavron 2005). Importantly, these veterans organized the Paralyzed Veterans of America, founded in 1947, which not only advanced the cause of those wounded in war but also acknowledged the disparity in the way they and disabled civilians were treated by society. Additionally, by midcentury a host of other civilian organizations—such as the National Association for the Deaf (1880), the American Foundation of the Blind (1921), the National Easter Seal Society (1922), the March of Dimes (1937), and the United Cerebral Palsy Association (1949)—had emerged to represent the interests of various constituencies of the disabled (Braddock and Parish 2001; Fleischer and Zames 2001; Scotch 2001).

The Contemporary Disability-Rights Movement The 1960s was a period of social turmoil and change in the United States, the time in which the civil-rights movement, the women’s movement, the consumer movement, the gay and lesbian movement, and other “oppositional” movements burst onto the political scene (Mansbridge and Morris 2001). The disability-rights movement, though less known, was an important part of this era of change. Unlike some of the other movements of this era, the disability-rights movement does not have a widely known figure with name recognition such as Martin Luther King, Jr., Rosa Parks, Betty Friedan, Gloria Steinem, or Ralph Nader. But Ed Roberts is arguably someone who is deserving of comparable recognition. Roberts, who was severely disabled from polio (he was a quadriplegic who had some minimal use of his hands), had gained admission to the University of California, Berkeley (UCB) in 1962, the same semester that James Meredith became the first African American to attend

14 • Disability

the University of Mississippi. As a youth, Roberts had had to fight to get his high-school diploma because he had not completed the driver’s education and gym requirements. . . . California’s Department of Rehabilitation [CDR] refused to pay for his college education, as it did for other, less disabled students, because Robert’s [CDR] counselor . . . believed that spending taxpayer money on [him] would be wasted since it was “infeasible” he could ever work. (Shapiro 1993: 44) Roberts took his case to the media, eventually forcing the CDR to relent (Braddock and Parish 2001; Fleischer and Zames 2001; Scotch 2001). Roberts’s success ushered in opportunities for other students with disabilities at UCB. Influenced by the political radicalism of the day, Roberts and this cohort of activists lobbied for accessibility reforms both on campus and in the larger Berkeley community. They questioned the conventional definition of “independence,” which defined it in terms of the tasks a person with a disability could perform without assistance. Instead, the activists wanted to define “independent living” in terms of the quality of life that people with disabilities could achieve with or without assistance. They argued that people with disabilities did not simply need custodial care but wanted “to be fully integrated [into] their communities” (Shapiro 1993: 52). They also aimed to reverse the power relationship between themselves and the medical, educational, and social-service professionals whose services they required. People with disabilities no longer wanted to be treated as clients who were told by professionals what to do. Instead, they wanted to be treated as self-advocates and consumers of services who could decide what was best for themselves. As this type of political activism spread throughout the country, the US Congress finally responded by passing a landmark piece of federal disability legislation, the Rehabilitation Act of 1973, which, among other things, mandated reasonable accommodations in public education and employment, required public institutions to initiate architectural accessibility reforms, and “made it illegal for any federal agency, public university, defense or other federal contractor, or any other institution or activity that received federal funding, to discriminate against anyone solely” for reason of disability (Shapiro 1993: 65). Most politicians who had voted for the Act, however, had not seriously considered its broader implications and potential costs of implementation. Thus, the Department of Health, Education and Welfare (HEW) under Presidents Gerald Ford and Jimmy Carter tried to stall the development and implementation of enforcement provisions (Braddock and Parish 2001; Fleischer and Zames 2001; Scotch 2001).

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When Joseph Califano, Carter’s Secretary of HEW, tried to push through regulations that would allow “some disabled children to be educated in special schools rather than [in] regular schools adapted for them,” disability activists derided the measure as “separate but equal” (Shapiro 1993: 68). And when Califano also came out for exceptions to rules requiring wheelchair ramps in schools and hospitals, the activists organized demonstrations around the country, particularly in “those cities where the ten HEW regional offices of HEW were located—Atlanta, Boston, Chicago, Dallas, Denver, Kansas City, New York, Philadelphia, San Francisco, and Seattle, as well as in Washington, DC” (Fleischer and Zames 2001: 51–2). Until this time “the disability rights movement had been local and disparate” (2001: 52). It now became a national and cross-disability movement of diverse groups working together for social change. It was this movement that eventually culminated in the passage of the Americans with Disabilities Act (ADA) of 1990, which further expanded the rights of the disabled in both the public and private sector. Although the implementation of the ADA, like previous progressive legislation for the disabled, has been plagued by controversy over its interpretation and implementation, it marked a seminal point in the legal rights and expansion of opportunities for the disabled in the United States (Braddock and Parish 2001; Fleischer and Zames 2001; Francis and Silvers 2000; Scotch 2001). The ADA, in conjunction with other legislation and judicial decisions, dramatically changed the social landscape for people with disabilities in the United States. Importantly, children with disabilities were not only given the right to a public education, but they were entitled to receive it in the “least restrictive environment.” This mandate meant that whenever possible students with disabilities were to be integrated into general classrooms and provided with the supplemental resources (including teacher aids) that would enable them to succeed. This inclusive approach, argued disability-rights advocates, would not only benefit students with disabilities but other students as well. Students with disabilities in integrated learning environments would likely be held to higher standards of achievement than in segregated classrooms, which would improve their later life chances of success. The other students would learn the value of compassion and gain experience interacting with people of varying limitations. The academic achievement of the nondisabled students might even be enhanced, too. As disability activist Judy Heumann observed of a classroom that included a student who had a severe communication disability: Before . . . the disabled student arrived . . . the children in the class had a reputation for being less attentive in class. . . . [Now] the students took great pride in learning what [this student] meant when she made various sounds and in interpreting her sounds to

16 • Disability

the teacher. In order to learn what their new classmate was saying, the students became quieter in class, and by the end of the semester, everybody was learning more. (quoted in Fleischer and Zames 2001: 199)

Stigma and the Social Model of Disability The foregoing historical account has illustrated ways in which “disability” is not a quality of the individual but, rather, a social construction. Before moving on to the next chapter, where we will focus on the question of disability and sports, it also would be helpful to consider some additional conceptual issues relevant to the study of disability and society. Erving Goffman’s seminal work on Stigma: Notes on the Management of Spoiled Identity (1963) is a common point of departure for sociological analyses of disability. Goffman argued that disparaging reactions from others invalidate the disabled as less than “normal” if not less than “human” beings. To ward off or manage potentially “spoiled identities,” people with disabilities attempt to conceal or otherwise manage their presentation of self through various coping strategies, for example, using humor to protect others from discomfort, refusing assistance to demonstrate competency accomplishing particular tasks, or engaging in sports and physical activity to compensate for their presumed lack of ability or different bodily appearance (Cahill and Eggleston 1995; Davis 1961; Scott 1969; Taub et al. 1999). Published the same year as Howard Becker’s Outsiders: Studies in the Sociology of Deviance (1963), Goffman’s Stigma essentially framed the sociology of disability within the labeling theory school of deviance, which posited that “deviance is not a quality of the act a person commits, but rather a consequence” of others’ reactions (Becker 1963: 9). Just as Becker advanced a general theory of deviance, Goffman proffered a general theory of stigma, attributing common devalued statuses to deviants of all types: the disabled, gays and lesbians, ex-convicts, mental patients, drug addicts and alcoholics, even people of color and women—indeed, anyone who was not an “unblushing American male,” that is, “a young, married, white, urban, northern, heterosexual Protestant father of college education, fully employed, of good complexion, weight, and height, and a recent record in sports” (1963: 128). Although Goffman helped elucidate the hardships of living experienced by people with disabilities, and he recognized that stigmatized attributes are historically contingent, he treated disability as a static or essentialist category and did not challenge societal notions of what constitutes a “normal” versus “deviant” bodied person (Davis 2002; Gill 2001; Wendell 1996). Thus, his perspective on stigma does not allow for thinking about

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disabled bodies in ways, as I suggested earlier, that disrupt conventional understandings of the physical competence of people with disabilities. Indeed, disabled athletes may be better understood not simply as managing a “spoiled identity” but as engaged in a process of “oppositional identity work” as they attempt to transform a potentially discrediting identity (that is, disability) into a crediting one (that is, athleticism) that represents a “noble rather than flawed character” (Schwalbe and Mason-Schrock 1996: 141). Joel Best (2004) notes that the various oppositional movements of the 1960s helped initiate a scholarly reappraisal of the entire notion of deviance, which many sociologists now reject as a pejorative. In its place, they advanced a social constructionist view of social problems as “the activities of individuals or groups making assertions of grievances and claims with respect to some putative condition” (Spector and Kitsuse 1987: 15). According to this view, the stigmatization of people with disabilities can best be understood as a consequence of social and political processes that translate patterns of physical and cognitive difference into social hierarchies of inequality (Irwin 2001). While Goffman clearly understood stigmatization as a socially constructed process, he was ambivalent about prescribing political resistance as a viable response to it. As he wrote in Stigma, although “the next generation of his fellows” may benefit from such efforts, “drawing attention to the situation of his own kind” may only consolidate “a public image of his differentness as a real thing and of his fellow-stigmatized as constituting a real group” (Goffman 1963: 114). As we have seen, however, proponents of disability rights would not be silenced, and they have been increasingly forthright about challenging conventional typifications of the disabled as abnormal, inferior, or dependent people who at best should be pitied or treated as objects of charitable goodwill. Although a benevolent “medical model” of disability was at one time a mark of progress, it is no longer sufficient. In its place, disability activists advanced a “social model” of disability, claiming it is not an individual’s impairment but the socially imposed barriers—the inaccessible buildings, the limited modes of transportation and communication, the prejudicial attitudes—that construct disability as a subordinate social status and devalued life experience.5 Following the example of other social movements, disability activists adapted the discourse of identity politics and multiculturalism to redefine societal notions of normality and to promote disability as an acceptable, even celebrated, form of social difference (Barnes and Mercer 2001; Davis 2002; Shakespeare 2006; Tregasis 2002; Wendell 1996). In this way, the disability-rights movement challenged the conventional view that disability is a “perversion of the human condition,” an unrelenting tragedy that propels victims into the depths of despair (Camilleri 1999: 849).

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While physical and cognitive impairments may never be wished for and are often the source of great suffering, people with disabilities differ quite dramatically in the nature of their condition, which is not as “wholly disastrous” as people often imagine (Fine and Asch 1988: 11). They commonly learn to appreciate and enhance their remaining abilities and to strive for goals and qualities of human worth that are still within their grasp (Gill 2001; Potok 2002; Wright 1960). And, contrary to Goffman’s expectations, sociological research has documented people with disabilities living beyond stigma, where people act kindly toward them and where their impairments matter little in the social networks in which they are embedded (Cahill and Eggleston 1995; Makas 1988; Schneider 1988; Taylor 2000). Still, people with disabilities remain one of the most socially disadvantaged constituencies in the United States and throughout the globe. In developing countries, the problem of disability and poverty is particularly severe. For people with disabilities in these nations, survival is a far more pressing issue than rights (Barton and Armstrong 2001; Charlton 1998; Davis 2002; Fleischer and Zames 2001; Priestley 2001; Schriner 2001).

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CHAPTER

2

Disability, Sports, and Basketball

Sociologists view sports as a social institution that both reflects and influences the broader society. Simultaneously, sports are a mechanism by which cultural ideas about “desirable and normalized bodies” are constructed and particular physical attributes and accomplishments are valued while others are denigrated (Cole 2002: 441). In this way, sports also reflect and influence social constructions about the alleged physical capabilities of various groups, for example, the able-bodied versus disabledbodied, women and girls versus men and boys, and blacks versus whites (Coakley 2004; DePauw and Gavron 2005). At first glance, it would seem obvious that the “disabled body” stands in contradistinction to the dominant, or hegemonic, “ideal of the athletic body” (Promis et al. 2001: 39). To some, the notion of a disabled athlete in a wheelchair may even seem to be an oxymoron, as people with mobility impairments are for the most part unable to participate in sports that have “historically been oriented to the able-bodied” (Promis et al. 2001: 39). Sports are also “gendered activities.” As Jay Coakley, a leading sports sociologist, explains: [T]he meaning, organization, and purpose of sports are grounded in the values and experiences of men and are defined to celebrate the attributes and skills associated with dominant forms of masculinity in society. . . . [I]n the world of sports, a person is defined as “qualified” as an athlete, a coach, or an administrator

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if he or she is tough, aggressive, and emotionally focused on competitive success. (Coakley 2004: 51–2; see also Burstyn 1999; McKay et al. 2000; Messner 1992; Therberge 2002) Disabled men, on the other hand, who are often viewed as weak, vulnerable, and incomplete, have generally been denied this masculine sense of self through sports (Gerschick and Miller 1995; Hardin and Hardin 2004; Smith and Sparkes 2004). Disability and sports is a growing area of disability studies and the sociology of sports that addresses issues of this nature (DePauw and Gavron 2005; Duncan 1998; Nixon 2002). Scholars in this field have recognized that sports participation may potentially serve as a site of empowerment and resistance for people with disabilities (Ashton-Shaeffer et al. 2001; Blinde et al. 2001; Guthrie and Castelnuovo 2001; Promis et al. 2001). In wheelchair sports, for instance, the rules of the game are constructed in a way that allows participants to embrace rather than to reject their impairment. As participants come together in free spaces of association (see Groch 2001), they are able to negotiate and nurture an affirmative disability identity, one in which they view themselves more as athletes than as people who are disabled (Berger 2008b). As we shall see, however, there are pitfalls to sports participation for people with disabilities as well. And, as noted in Chapter 1, many in the disability community are especially critical of the so-called supercrip athlete, who they view as a negative model which is disempowering for people with disabilities. Moreover, society does not typically recognize disabled sports as “real” sports but rather as therapeutic or special recreation (see Smith et al. 2005), which raises the question of how and why some physical activities and not others acquire social legitimacy as sports (Berger 2008b; Coakley 2004; Hedrick 2000; Snow 2007).

The Uses and Abuses of Competitive Sports Coakley observes that conventional society views sports “as institutionalized competitive activities that involve rigorous physical exertion or the use of relatively complex physical skills by participants [who are] motivated by internal and external awards” (2004: 21). For our purposes, the crucial element of this definition is the competitive nature of sports. In societies that “emphasize cooperative relationships, the idea that people should compete with each other for rewards” might actually be viewed as disruptive or dysfunctional (2004: 25). But even in societies that value competition, overconformity to the competitive ethic can have negative consequences.

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Coakley notes that the “performance ethic” of competitive sports entails several elements of what it means to be an “athlete”: sacrificing other interests for “the game,” striving for distinction, accepting the risk of defeat, playing through pain, and refusing to accept limits in the pursuit of excellence. While overconformity to this ethic can lead to the taking of performance-enhancing drugs, the development of an attitude of hubris toward others, and a desire to humiliate or even physically harm an opponent during a game, under desirable conditions the competitive ethic can have positive benefits, including the building of “self-esteem, responsibility, achievement orientation, and teamwork skills required of occupational success” (Coakley 2004: 485; see also Berger 2008b; DePauw and Gavron 2005; Shogan 1999). As far as people with disabilities are concerned, an extensive body of research supports the proposition that participation in sports provides an array of benefits.1 For many, the primary benefit is the intrinsic satisfaction, the reward felt for playing the game, accomplishing the task itself. Others enjoy the camaraderie and affirmation they get from teammates and peers. Participants gain improved physical conditioning and a sense of bodily mastery, along with a heightened sense of self-esteem and personal empowerment that spills over into other social pursuits. They learn to view “challenges as possibilities rather than as obstacles,” to deal with defeat not as failure but as incentive to do better (Blinde et al. 2001: 163). These enhancements are not simply therapeutic or rehabilitative, for they are the same ones often enjoyed by the able-bodied who participate in athletics. At the same time, as competitive opportunities for playing wheelchair sports have expanded, critics have questioned whether people with disabilities actually benefit from “able-bodied achievement values” and whether the competitive athletic model is an appropriate one to emulate (Nixon 2002: 429; see also Hahn 1984; Hardin and Hardin 2004). But while complaints about the supercrip are often used to bolster this critique, disabled athletes themselves say that they find media representations of other disabled athletes inspiring, believing that the latter model an affirmative experience of disability for people with disabilities as well as the general public (Hardin and Hardin 2004). Howard Nixon (2002) concludes that “disabled athletes have shown that they want opportunities to compete” at the elite level of their respective sports, and he thinks that the best way to accommodate this interest is to develop differentiated sports structures that allow for a “continuum of options . . . ranging from relatively uncompetitive recreational sports where ‘everyone is a winner’ to highly competitive elite sports where only a very talented few are selected or earn the right to compete” (Nixon 2002: 429). This is the approach that is taken in ablebodied sports, and in spite of the stress of elite competition (see Campbell

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and Jones 2002), there is little reason to expect or desire disabled athletes to forgo comparable opportunities to excel (Berger 2008b).

Disability Sports in Historical Context: National and Global Dimensions The history of sports goes back to ancient times, but sports as we know it today emerged during the course of the Industrial Revolution in the late eighteenth to early twentieth centuries. Before that era, as Coakley (2004) observes: People did not see [sports] as having any utility for athletes in particular or society in general. No one thought that sports and sport participation could change how people developed or acted or how social life was organized. . . . [T]here were no reasons for people to organize sports activities for others or to build sport organizations to oversee participants or events. A few people formed sports clubs, and they occasionally scheduled contests with other groups, but they did not form leagues or national and international associations. (Coakley 2004: 74) Coakley further notes that the growth of organized sports in the United States occurred in the period between 1880 and 1920, an era in which sports were played primarily by working-class and middle-class white men and boys. During this time, cultural notions about the “character-building” aspects of sports emerged. The people who developed and organized new sports programs, especially in the area of team sports, thought they could use sports to discipline young male workers. They also felt that sports could be used to turn overly feminine “middle-class boys into assertive, competitive, achievement-oriented young men, who would become effective leaders in business, politics, and the military” (Coakley 2004: 79). Karen DePauw and Sharon Gavron (2005) add that societal concern about the physical fitness of men needed for military service around the time of the two world wars also led to the development and expansion of physical-education programs around the country. Although an increasing number of women and girls began participating in sports during this era, they had fewer opportunities to play, and no one thought that sports were character-building for them. Medical doctors even warned young women that “playing sports would sap the energy . . . [they] needed to conceive and bear healthy children” (Coakley 2004: 80). Additionally, discrimination against people of color and some white ethnic groups (for example, the Irish, Poles, Italians, and Jews) abounded, and

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much of their participation in sports, especially among African Americans, occurred in segregated settings. In 1946, Kenny Washington was the first African American to play in the National Football League. Jackie Robinson is, of course, well known for breaking the color barrier of Major League Baseball in 1947. And in 1950, Earl Lloyd became the first African American to play in the National Basketball Association (NBA). Deaf individuals appear to have been the first among people with disabilities to become involved in organized sports. Beginning in Germany in 1888, sports federations for the deaf emerged in several countries in Europe by the 1920s. Sports for people with mobility impairments, however, developed only in the aftermath of World War II, at a time when improved battlefield evacuation methods and medical technologies dramatically increased the survival rate of the wounded. These soldiers, including those with spinal-cord injuries, would have died in previous wars. Many disabled veterans in the United States, who were often warehoused in Veterans Administration (VA) hospitals throughout the country, had previously enjoyed participation in competitive sports and would not tolerate inactivity. They started playing pool, table tennis, and catch, and then progressed to swimming and bowling and pick-up games of water polo, softball, touch football, and basketball (DePauw and Gavron 2005; Fleischer and Zames 2001; NWBA 2007b). In Great Britain at this time, the National Spinal Cord Injury Center at Stoke Mandeville Hospital, under the direction of neurosurgeon Sir Ludwig Guttmann, introduced competitive sports as part of the therapeutic recreation it offered to disabled veterans. The first competitions held in 1948 included just a few events (for example, shot put, javelin throwing, and archery), but the competition quickly expanded to include other sports as well. In 1952, Guttmann organized a tournament with disabled veterans from Holland, which included 130 athletes who competed in twelve different events. Subsequently, this tournament, now called the International Stoke Mandeville Games, evolved into what is arguably the most important international movement in disability sports: the Paralympics. The first summer Paralympics was held in Italy in 1960, and the first winter Paralympics in Sweden in 1976. Women were first included in the Paralympics held in Israel in 1968. By 2004, nearly 4,000 athletes from 130 countries competed in twenty-one events (eighteen for women) at the Paralympics held in Athens, Greece (DePauw and Gavron 2005; Labanowich 1987; Nixon 2002; Smith et al. 2005; Wheelchair Sports, USA 2007). The term “Paralympics” initially referred to the word “paraplegic” but later came to mean “parallel,” as the competitions (since 1988) have been held just following and in the same venue as the regular Olympics. Although the Paralympics is separated from the able-bodied Olympics, it bears little resemblance to the Special Olympics held for the cognitively disabled in

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the United States. The Special Olympics, founded by Eunice Kennedy Shriver in 1968, is better funded through charitable contributions than are sports programs for the mobility impaired, particularly through subsidies received from the Joseph P. Kennedy Jr. Foundation (DePauw and Gavron 2005). Paralympians are at times disgruntled that the Special Olympics receives more publicity and that the public does not seem to understand the difference between these two sport competitions (Berger 2008b; Juette and Berger 2008). Although the Special Olympics are competitive, they are not in the same league as the Paralympics, which are intended for elite athletes who train and compete with the same level of dedication and intensity as their able-bodied Olympic counterparts (Nixon 2002).

The Game of Wheelchair Basketball In 1891, James Naismith, a physical-education teacher at a YMCA training school in Springfield, Massachusetts, invented the game of basketball so that white Christian youths could have a competitive sport to play indoors during the winter months (Naismith 1996; Wideman 2001). Naismith envisioned the sport as a means of promoting healthy bodies for spiritually healthy souls and could not have anticipated how popular the game would become among players and fans alike. He certainly could not have anticipated the game’s cultural influence on African Americans that has occurred in recent decades. Neither could Naismith have anticipated that the game he created would be played and enjoyed by people in wheelchairs. Among all the disability sports that emerged in the wake of World War II, wheelchair basketball arguably became the most popular. In 1948, several VA teams were organized under the auspices of the Paralyzed Veterans of America, and the Birmingham Flying Wheels from California made the first of several cross-country tours, competing with teams around the country and spreading the word about the sport among disabled veterans and nonveterans alike. An immediate result was the formation of the Kansas City Wheelchair Bulldozers, later called the Rolling Pioneers, which was the first wheelchair-basketball team to be formed outside of the VA system (DePauw and Gavron 2005; Labanowich 1987; NWBA 2007b). The first collegiate wheelchair-basketball team composed of nonveterans also was established in 1948 at the Galesburg extension campus of the University of Illinois (U of I) under the leadership of Timothy Nugent, Director of the university’s student rehabilitation services. When the State of Illinois closed its Galesburg campus, soon after, Nugent moved the team to the U of I’s flagship campus at Urbana-Champaign, where he also developed the prototype for disabled-student services that was later adopted throughout the country.

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In 1949, Nugent organized the first National Wheelchair Basketball Tournament, which was held in Galesburg. During that tournament, the participating athletes decided to organize the National Wheelchair Basketball Association (NWBA), the sport’s first national governing body. The NWBA’s mission included working on the standardization of rules, determining the eligibility of participating individuals and teams, conducting tournaments, and “foster[ing] the concept of the participant as an athlete in his own right, and by doing so, establish[ing] the validity of the sport as a legitimate avenue of athletic expression for all disabled individuals” (NWBA 2007a). In general, the rules of the game are similar to the ones used in standup basketball. In the case of wheelchair basketball, however, players are allowed two pushes of the wheelchair before they must shoot, pass the ball to a teammate, or dribble the ball at least once. At one time, before the rules were refined, ramming into an opponent’s chair was part of the game. Today, although some incidental physical contact is allowed, the chairs are considered part of the player, and general basketball rules prohibiting charging and blocking are applied (Crase 1982; Smith et al. 2005). Currently, the NWBA boasts a membership of over 2,000 players. It organizes men’s, women’s, juniors’, and collegiate divisions, and it sponsors over 200 teams. Although the NWBA is an amateur organization, a number of its teams receive financial support from, and bear the names of, professional NBA teams. The NWBA is the official body that governs the selection, training, and fielding of US teams that compete in international competitions, which include the Paralympics and the Wheelchair Basketball Championship, or Gold Cup, held every four years in the off-years between the Paralympics.2 Since 1993, the NWBA has been affiliated with Wheelchair Sports, USA, formerly the National Wheelchair Athletic Association, the broader organization that facilitates US participation in international competitions (NWBA 2007c; Smith et al. 2005; Wheelchair Sports, USA 2007).3

The Sports Wheelchair As early as the 1950s, wheelchair-basketball players began experimenting with the design of their chairs, making them more suitable for competitive sports. At that time, the Everest & Jennings (E & J) company held a wheelchair patent that gave them virtual monopolistic control of the wheelchair industry until a US Justice Department lawsuit in 1977 helped open the market to other companies. The E & J adult model, which was made out of chrome-plated steel and weighed 45–55 pounds, had a number of features such as hard rubber tires and fixed armrests that were not conducive to sporting activities (Fleischer and Zames 2001; LaMere and Labanowich 1984).

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One of the first innovations was the development of the pneumatic (air) tire to replace the hard rubber tire that was used on the conventional wheelchairs of that era. Players found that the hard tires would at times separate from the rims while they were turning their chairs and that they also provided a rougher ride and would break down after about three months of play. Aided by a $1,800 grant that Nugent received from the Chicago Sun-Times Veterans Association, designers at U of I developed a pneumatic tire that was more durable and provided a more comfortable ride. Additionally, players began removing the armrests and push handles from their chairs and lowering the backrest to eliminate unnecessary bulk and weight. They attached antitip casters to the underside of the rear frame, several inches off the ground, so if the front end of the chair lifted off the floor, the casters prevented it from tipping over. The players also angled the wheels, making them farther apart at the bottom than at the top, giving the chairs more stability and making them easier to turn. By the late 1960s, the manufacture of tubular stainless-steel chairs lowered the standard weight to about 30–35 pounds (LaMere and Labanowich 1984). The contemporary lightweight sports wheelchair, however, was apparently the brainchild of Marilyn Hamilton, who became a paraplegic after suffering a spinal-cord injury in a hang-gliding accident in 1978. Prior to her injury, Hamilton had been an avid tennis player. She found the conventional hospital chairs, even the stainless-steel models, too heavy and bulky for tennis. She asked two of her hang-glider friends, who designed gliders, to build her a lighter chair. The 26-pound aluminum chair they came up with was light and sturdy. It had a sleek and sporty look, with a low-slung back and compact frame that resembled a multispeed racing bicycle. Hamilton and her friends started their own business, manufacturing and selling their Quickie brand wheelchairs as fast as they could. The chairs came in a variety of colors and transformed an unappealing medical apparatus into a symbol of fun, sport, and disability pride. Today, several manufacturers design lightweight sports chairs for use in a variety of athletic venues (Juette and Berger 2008; Shapiro 1993).4

The Classification System One aspect of the game of wheelchair basketball that can seem rather perplexing to new spectators is the player classification system. The classification system was devised by the NWBA to address the problem of competitive fairness that emerged as players with rather diverse physical impairments became attracted to the game and some teams started using less disabled players to gain an advantage. Ambulatory post-polio players, for instance, and amputees or those who are missing a foot or some toes, have full use of their upper bodies and have an advantage over spinal-cord injured players who have restricted upper-body movement. Thus, some

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players are able to lean out of their chairs to shoot or pass, grab a rebound, receive a pass, or pick up the ball from the floor. Others have little or no sitting balance without using leg straps or supporting themselves with the back of the chair, or they need to hold on to at least one arm of the chair in order to move their trunk frontally or laterally (Juette and Berger 2008; Labanowich 1988; Smith et al. 2005). The problem of competitive fairness threatened to limit opportunities for many disabled individuals to pursue self-enhancement through sports, and in the 1960s the NWBA incorporated a medical-based player classification scheme, which has undergone modification over time, into the rules of the game. To understand this system, one needs to know a little about the structure of the spinal column. From top to bottom, the spine consists of five regions: the cervical (neck), thoracic (chest), lumbar (lower back), sacral (hip), and coccygeal (tailbone) regions. The cervical (C) region consists of seven vertebrae, descending from C1 to C7, while the thoracic (T) descends from T1 to T12, and the lumbar (L) from L1 to L5. Below the lumbar region are five fused vertebrae of the sacral region and four fused vertebrae of the coccygeal region. In general, the higher the level of impairment, the greater the loss of movement function. Under the NWBA medical classification rules, Class I players, the most seriously disabled, include those who have loss of movement function due to an impairment occurring at the T7 vertebrae or above. Class II players include those who have movement loss due to an injury occurring at the T8 level and descending through the L2 level where motor power of hips and thighs may be maintained, as well as amputees with bilateral hip disarticulation (amputation through the hip-joint capsule). Class III players include those who have other lower-extremity paralysis (partial or complete) occurring at or below the L3 level, as well as other impairments due to amputation (besides bilateral hip disarticulation), cerebral palsy, and other conditions unrelated to spinal-cord dysfunction. According to the NWBA rules, Class I, II, and III players are assigned 1, 2, and 3 points, respectively, and each team is required to put five players on the court who total no more than 12 points. Thus, a team could field a squad of three 3-point players, one 2-point and one 1-point player, for example. Over the years, the classification system has increased participation of more seriously disabled athletes. Player classification rules are similar for international competition, although here a more complex half-point classification scheme ranging from 1.0 to 4.5 points is used, with each team being allowed no more than 14 points on the court at a time. The international system also uses a functional-based evaluation, whereby trained evaluators observe a player’s performance and movement capabilities before assigning a number. The international rules recognize that purely medical criteria are inadequate

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given the number of players whose impairment is near the upper limit or the lower limit of a particular classification category (DePauw and Gavron 2005; Labanowich 1988; Smith et al. 2005).5 In many respects, it is desirable for a player to receive as low a classification as possible, for one’s playing time may increase if he or she uses a smaller proportion of the team’s allowable points. But one of the ironies of a functional-based system is that a player can improve his or her ability through hard work, practice, and greater experience in the sport, which makes the conditioned athlete appear less impaired than others with similar medical conditions. At the same time, when players are performing in front of evaluators, they will sometimes fake inability to do things they can actually do. If a ball is thrown above their head or off to the side, for instance, they will not even try to get it. But once a player receives a classification, it is difficult (though not impossible) to change it (Juette and Berger 2008).

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CHAPTER

3

A Case Study of Competitive Wheelchair Athletics

The study reported in this book derives from my membership in a university community at the University of Wisconsin-Whitewater (UWW), which is located between Madison and Milwaukee, Wisconsin, about two hours by car north of Chicago, Illinois. Founded as a school for teachers in 1868, UWW is now a comprehensive four-year university with a population of over 10,000 students, the fourth largest of the twenty-six campuses in the University of Wisconsin system. The provision of services for students with disabilities is an official state mission of the university, which has received national recognition as an exemplary college program for its efforts in this area (National Association of Student Personnel Administrators 1999). UWW’s Disabled Student Services (DSS), later called the Center for Students with Disabilities, was founded in the early 1970s under the stewardship of John Truesdale, who served as DSS Director for some thirty years.1 Facilities on campus are now entirely accessible, with curb cuts, ramps, elevators, automatic doors, adapted lavatory facilities, and specially designated parking stalls. UWW also offers a number of specialized services to students with disabilities, including academic and career counseling, instructional aids, transportation assistance, liaison with government and community agencies, and recreational and sports opportunities. The sight of students in wheelchairs on campus is commonplace and an empowering experience for students with disabilities who previously may have felt isolated and stigmatized. This chapter introduces the study of UWW wheelchair basketball that is the primary focus of this book. It includes a description of the life-history

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interview methodology, a brief profile of the sixteen interview participants, and a historical account based on the interviews of the development and evolution of the program that brought these diverse individuals together.

Method and Interview Participants Life-history research is a time-honored tradition in sociology that has “vacillated in acceptance and popularity over the years” (Goetting 1995: 5). Also termed “interpretive biography” and “life-story research,” among other designations (Atkinson 1998; Denzin 1989a; Luken and Vaughan 1999), the life-history methods aims to advance C. Wright Mills’s (1959) vision of the sociological imagination as an enterprise that grapples with the intersection of biography and history in society and the ways in which personal troubles are related to public issues. By linking personal stories to collective narratives, this qualitative genre strives to recreate the “experiential integrity of human existence” (Goetting 1995: 7), to reveal the world of ordinary people’s “problematic lived experience” (Denzin 1989b: 7), and to show how society “speaks itself ” through the lives of individuals (Rosenwald and Ochberg 1992: 7). In this life-history study, I contacted the participants through a snowball sampling process that began with people I previously had known through my association with the university, beginning with Amy Bleile and Melvin Juette, whom I mentioned in Chapter 1, and John Truesdale, the founding director of DSS and the basketball team’s first coach. The sample was purposive insofar as I wanted to interview both elite players (that is, those who played on the US or Canadian basketball teams) and nonelite players, which enabled me to learn from individuals who had varying levels of ability and commitment to the game.2 I also aimed to diversify the sample by contacting players with different types of disabilities, including those who had congenital disabilities and those who had acquired disabilities, as well as multiple generations of players who began playing at UWW during different stages of the basketball program’s institutional career. Finally, I wanted to talk to some nonplaying personnel to get their perspective on the UWW program and on issues related to disability and sports. I conducted most of the interviews in an office on the UWW campus or in the participants’ homes in the nearby area. Three of the interviews took place in Urbana, Illinois, where the participants had moved to become involved with the basketball program at the University of Illinois, UrbanaChampaign (U of I). All of them agreed to talk on the record and were comfortable with using their real names. On the rare occasion when something came up that they wished me not to disclose, I agreed to their request. The median length of the interviews, which were tape-recorded and transcribed verbatim by me, was two to three hours.

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The study, by the very nature of the UWW program, was primarily about men’s wheelchair basketball, and all but two of the sixteen interviewees were men. In the later half of the 1990s, UWW had tried to organize a women’s team, but the team folded in two years because of lack of interest.3 In contrast, U of I has a successful women’s team that is one of the best in the nation. The two women I interviewed played for U of I following their association with UWW. These two women were included in the study to add their experience and perspective. Table 3.1 lists the names of the participants in the study, identifies the nature of their disabilities, and provides a brief description of their involvement in competitive wheelchair sports. All told, eight of the players I interviewed had congenital conditions which were apparent at birth (Eric Barber, Amy Bleile, Jeremy Campbell, Dan Ferreira, Jon Fraser, Matt Glowacki, Christina Ripp, and Matt Scott); one had a medical condition that did not manifest itself until he was a young boy (Joe Johnson) and another until his late teens (Joe Chambers); and three suffered spinal-cord injuries due to an automobile accident (Mike Frogley and Jeremy Lade) or gunshot wound (Melvin Juette). Most of the participants were Caucasian men, although three were African American (Barber, Juette, and Scott) and two, as noted earlier, were women (Bleile and Ripp). In addition to John Truesdale, I also interviewed two nonplaying personnel: Mike Lenser, who has been the physical therapist and trainer for the team since 1989, and Tracy Chenowyth, who has been the coach of the team since 1998.4 The objectives of the study were twofold: (1) to document and interpret the life histories of players who have found participation in wheelchair sports a positive experience in their lives; and (2) to obtain information from knowledgeable insiders about the evolution and current state of the UWW wheelchair-basketball program, with an eye toward engaging them in frank conversational exchanges about issues pertaining to disability identity, divisions in the disability community, and the role of sports in empowering or disempowering people with disabilities. Some points of discussion were derived from my prior reading of the literature and some emerged in the course of the research (see Glaser and Strauss 1967). In a few cases, I followed up the interviews with e-mail communications or conversations at wheelchair-basketball games to ask for more detail about issues that may have been neglected or glossed over at the time of the initial meeting. I established trust and rapport with my informants by adopting a nonjudgmental attitude and by disclosing that I have a daughter with cerebral palsy, both of which helped facilitate candid discussions of the issues I wanted to address in the study (see Neuman 2003; Spradley 1979). Taking a “narrative-interview” approach (Helling 1988), I prompted my informants to reconstruct their lives through the best of their recollections and according to their own relevancies. I intervened at various times

32 • Disability Table 3.1 Players, coaches, and personnel associated with University of Wisconsin-Whitewater (UWW) wheelchair basketball. Elite players First generation Eric Barber (scoliosis): player on UWW team, US national team, and National Wheelchair Basketball Association (NWBA) Milwaukee Bucks Mike Frogley (auto accident paraplegic): player on UWW team, player and head coach of Canadian national team, and head coach of UWW men’s team and University of Illinois men’s and women’s teams Melvin Juette (gunshot paraplegic): player on UWW team, US national team, and NWBA Milwaukee Bucks Second generation Joe Johnson (Legg-Calvé-Perthes disease): player on UWW team, Canadian national team, NWBA Milwaukee Bucks, and professional teams in Australia and Germany Third generation Jeremy (Opie) Lade (auto accident paraplegic): attended UWW youth programs, player on UWW team, US national team, and NWBA Milwaukee Bucks Christina Ripp (spina bifida): attended UWW youth programs, player on University of Illinois and US national women’s team, and NWBA Denver Rolling Nuggets; also a member of US track and field team and a world-class wheelchair racer Fourth generation Jeremy Campbell (spina bifida): player on UWW team and US national team Matt Scott (spina bifida): player on UWW team and US national team Joe Chambers (single leg amputee following bone cancer): player on UWW team, US national team, and NWBA Milwaukee Bucks Non-elite players Second generation Amy Bleile (cerebral palsy): player on UWW and University of Illinois teams Dan Ferreira (osteogenesis imperfecta): player on UWW team, assistant coach of University of Illinois men’s and women’s teams, head coach of NWBA Phoenix Banner Suns, and assistant coach of US men’s team Matt Glowacki (born without legs): player on UWW basketball team; also a player on US national sit-volleyball team Third generation Jon Fraser (spina bifida): player on UWW team Able-bodied coaches and personnel Tracy Chenowyth: head coach of UWW team, coach of US juniors’ team, and assistant coach of US men’s and women’s teams Mike Lenser: physical therapist/trainer on UWW team and US national men’s and women’s teams John Truesdale: founding director of UWW Disabled Student Services and first UWW basketball coach

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to encourage elaboration and to ask questions about their experiences and opinions. As I noted earlier, my aim was to tap into the tacit knowledge available to insiders of this social milieu, to learn from them rather than to study them and to provide “thick descriptions” of the life worlds in which they are embedded. Through the process of transcribing the tape-recorded interviews, reading and rereading the transcripts, and taking notes upon notes (Lofland and Lofland 1995), I acquired intimate knowledge of the content of the interviews and constructed the thematic narrative that is told in this book.5 Ann Goetting argues that people’s narrations of their lives, as well as a biographer’s interpretation of those lives, is “not simply a ‘true’ representation of an objective ‘reality’ ” but an incomplete reconstruction of a remembered past that is inevitably marked by a degree of distortion due to the fallibility of memory and the subjectivity of perception (1995: 13). Just as “two people telling a story about the same event may tell it differently,” any one person may tell his or her story differently at different points in time (Atkinson 1998: 60). If a story of a person’s life is told honestly, to the best of his or her ability, it may be the closest approximation to the truth he or she can muster, but it is not the invariant “truth” of what transpired. At the same time, when a person tells his or her story from the perspective of hindsight rather than the immediacy of the events, it is no less authentic for having been seasoned by conscious reflection, because how one remembers the past may be the most essential part of the story he or she has to tell (Goetting 1995: Gusdorf 1980). As Robert Atkinson observes, a “person’s story is essentially an expression of his or her selfunderstanding. . . . What may be of greatest interest is how [they] see themselves and . . . want others to see them” (1998: 20). The thirteen players I interviewed for this study span four generations of athletes whose association with UWW has enhanced their lives. Before turning to their stories, however, it is first important to set their experience in context by providing a brief account of the history and evolution of the UWW wheelchair-basketball program, which I constructed from the interviews with several of the participants.

History and Evolution of the Program The UWW wheelchair-basketball program began with the efforts of John Truesdale, who arrived at the university in 1970 after working for a couple of years in the State of Wisconsin’s Division of Vocational Rehabilitation (DVR). John was hired to administer a three-year grant that had been obtained by Faculty in the UWW Department of Special Education to develop services for students with disabilities. This was a time, prior to the Rehabilitation Act of 1973 and decades before the Americans with

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Disabilities Act of 1990, when such services barely existed anywhere in the country. As John told me: I didn’t know what I was getting myself into when I came to Whitewater. . . . At that time, colleges didn’t have to make any accommodations. You could deny admission to someone because they had a disability. If you managed to get to college, you negotiated your way through on your own. You had to fight for yourself. The kids who were coming in those days were pretty resourceful. Nobody gave them anything. John spent the next three decades at UWW, founding the university’s DSS program and helping to establish Whitewater as one of the premier campuses in the country for students with disabilities. Back in the early 1970s, however, John was still trying to figure out how to best serve the disabled students’ needs. He began visiting other campuses to see what they were doing and met Tim Nugent, who was then the Director of the disabled student program at U of I. After visiting with Nugent, John became impressed with the idea that disability sports could be a way to make the broader DSS program at UWW more visible. “If you’re going to try to get publicity for your university,” he recalled, “you had to have something that people could relate to, and that would be sports. . . . At the time there wasn’t much for people with disabilities to do, besides collect their social security. . . . So we thought we’d try sports.” In 1973, with some grant money from the Wisconsin DVR, John bought fifteen sports-model chairs, which by today’s standards were still rather large and heavy. He also invested some of the money into remodeling the gym locker room, so that the players had accessible showers, toilet facilities, and lockers. The first year he attracted only five students to play, not enough to field a competitive team. But over time the program expanded. John also was the team’s coach. Although he knew something about coaching basketball, he knew nothing about the wheelchair game per se. In fact, coaching strategy for wheelchair basketball had yet to be developed (see Hedrick et al. 1994). For the first few years, the team floundered. But in 1981, when Truesdale stepped down as coach, he handed the new coach, Frank Burns, a squad of fifteen competitive players. In Burns’s second year, he led the Rolling Warhawks, as the team became known, to its first collegiate championship.6 Burns coached the UWW team for five years, until he left to pursue a career in sports marketing, and was replaced by Ron Lykins, who coached the team from 1986 to 1993. Lykins took the basketball program to a new level, bringing an athletic model of disability sports to campus. This model included outreach efforts to recruit experienced players. As Mike Frogley,

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who was one of Lykins’s recruits (from Canada) and who later coached the UWW team from 1993 to 1997 before taking a coaching position at U of I, told me: Ron realized that [if you wanted a good team] you just couldn’t wait for a kid to come to school . . . and then teach him to play wheelchair basketball. . . . [You had to go] out and look at specific people . . . [who] were already playing. Lykins was an innovator in the ongoing national and international effort to promote wheelchair basketball as a legitimate sport, not just as a disability sport (see DePauw and Gavron 2005; Hedrick 2000; Snow 2007), and he encouraged his players to view themselves as legitimate athletes capable of competing with the best players in the game. In doing so, he modeled his approach to coaching after some of the most successful stand-up college coaches of his era, particularly Bobby Knight. Knight, well known for his abusive actions toward his players, is reviled by many. To many sports sociologists he arguably represents the worst of competitive athletics. Yet many people in the sport hold him in the utmost respect for his knowledge of the game and track record of developing outstanding teams and players. Lykins’s style of coaching raises the question I posed earlier about whether people with disabilities actually benefit from able-bodied achievement values and whether disabled athletes who are viewed as supercrips can ever serve as appropriate models for other disabled people to emulate. The UWW players I interviewed had varying attitudes toward Lykins’s methods—some positive, some ambivalent, and some negative. Mike Frogley, Melvin Juette, and Eric Barber were the three elite players in my sample who played for Lykins. Melvin, the first of Lykins’s recruits to make the US national team, had played juniors’ ball through the Rehabilitation Institute of Chicago (RIC) before coming to UWW. He described Lykins as: a coach who worked his players hard and yelled and berated us for our mistakes. . . . If he didn’t like something we were doing in practice, he yelled at us incessantly and made us do “sprints” up and down the court. If someone made a mistake in a game, he called a time-out and lit into the player: “You fuckin’ idiot! Is your head stuck up your ass!” According to Melvin, “Several players actually left the team because they couldn’t put up” with Lykins’s antics, but “I thrived under his guidance.” Matt Glowacki, the one nonelite player I interviewed who played for Lykins, did not leave the team. But neither did he “get along with the man. . . .

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We’d be doing a drill and he’d throw balls at your head if you didn’t do it right. . . . He’d hit me a lot, . . . smack me in the head . . . if I didn’t learn something well.” In spite of his potential for abuse, Melvin acknowledged that Lykins “ultimately won the respect of the better athletes on the team.” Eric agreed that he was a “tyrant” and that “he came very close to breaking me.” But he also believed that “much of the success I’ve enjoyed in the sport is because of him.” Eric had been one of Melvin’s teammates at RIC, and one of the reasons he decided to attend UWW rather than another university was that he could see how much Melvin’s basketball skills had improved during the short time he had trained and played under Lykins. As Eric explained: In juniors’ basketball you’re working out or practicing once, maybe twice a week. . . . At Whitewater, you’re going a minimum of five times if not six times a week, with an opportunity to go seven if you want, as far as getting a workout and scrimmaging, just working on your game. Mike added: Ron was tough. But I’m glad he was tough too. I think we became better and more disciplined because of that. We didn’t always like it. But I don’t think we would have been as good or as sound in our understanding of the game if he hadn’t been. . . . We were young kids. We needed the discipline and he gave it to us. . . . There’s a mental toughness that comes out of being in a situation like that and surviving. Mike told me that universities like UWW and U of I have played an increasingly important role in the evolution of wheelchair basketball in the United States, modeling themselves after college-level varsity athletics. In the beginning, wheelchair basketball under the auspices of the National Wheelchair Basketball Association (NWBA) was viewed exclusively as a recreational or club sport. The teams typically practiced, mostly scrimmaged, once a week. Now there are a lot of specialized training regimens and skill-development drills that coaches run during practices that improve players’ abilities in a shorter period of time. According to Mike: Within a period of two or three years we’re getting guys up to the same level or better than these other guys who’d been playing [recreationally] for ten, fifteen years. . . . So the colleges have started to become . . . breeding grounds for the top-level athletes.

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Up-and-coming young players are looking at the colleges and saying, if I want to get good, if I want to get on a national team, I’m going to go to one of these colleges. During his tenure as coach, Mike oversaw a somewhat irregular arrangement whereby the university sponsored two teams, a college team composed of students and a community team composed of elite-level alumni like Melvin and Eric and some of the better student players.7 As other UWW players continued to make the US national squad, and elite players from Canada and Australia were added to the team, the practices they had in the university gym became increasingly intense, and the teams increasingly competitive. Mike Lenser, who was hired as a physical therapist midway through the Lykins era, had never heard of wheelchair basketball before arriving at UWW. Although his job was to assist all students with disabilities, he found himself particularly drawn to the players. “Basketball’s always been my thing,” he said. “It’s my favorite sport. I still play. So it was natural for me to fall into that and start helping the players out with their injuries, and as a trainer.” Early on, Mike gained a lot of respect for how difficult it is to play the game. “I got into a chair and tried it . . . [and it] was a totally humbling experience, because it’s just so different” from the stand-up game. “You’re not using your legs, plus adding all the extra skills that are necessary to be able to handle the chair.” Lenser reflected on the evolution of the UWW program during his years at the university from a team with “a lot of so-sos . . . [to] a critical mass . . . [of] players who were taking their game to a higher level.” How many other places are there in the country where you can go and find players of this caliber practicing on a regular basis? Too often it’s a handful of guys shooting around a playground or gym. . . . Or in some places, the guys are driving in 50, 60 miles away to get enough players to make a team. . . . This is a really unique situation here, where there are so many players, along with the facilities and weight room, the workout equipment, right here. Tracy Chenowyth, who took over as coach in 1998, was initially taken aback when he arrived on campus after coaching a recreational team in Indiana while he was attending graduate school in sports administration at Ball State University in Muncie, Indiana. Tracy told me about how he had stumbled into wheelchair basketball at Ball State. As part of his graduate assistantship, he was in charge of managing the campus recreational facility. Tracy went to campus one Sunday to do some paperwork. The building was supposed to be locked to the public, but he heard some basketballs bouncing in the

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gym. He went over to investigate and found a group of guys in wheelchairs practicing wheelchair basketball. In the middle of the court, Dan Byrnes, Tracy’s assistantship supervisor, was yelling at the players and making them run drills like an ordinary basketball team. “My first thought,” Tracy recalled, “was don’t yell at them. They’re in wheelchairs.” At the same time, he was amazed at what the players were doing. During a break, Tracy went up to Byrnes and learned that this was the Indianapolis Racers team that practiced in Muncie on Sundays and in Indianapolis on Tuesday nights. The coaching was something Byrnes did on a volunteer basis, and he asked Tracy if he would like to get involved, which he did. In spite of this experience, however, Tracy was not prepared for “what wheelchair basketball means at Whitewater. . . . When I got here the guys quickly educated me. . . . It is fun, but it’s not recreation. And it’s definitely not fun all the time. . . . It’s six days a week. It’s scouting, recruiting, videotape, game plans, a lot of travel. Very intense. A very elite mentality.” Although John expressed some regret that under Lykins and Frogley the basketball program had become “a little too specialized,” even “elitist,” the latter two coaches did introduce a range of programs for preteens and teens (that is, summer sports and recreation camps and weekend outreach

Figure 3.1 Coach Tracy Chenowyth with the University of Wisconsin-Whitewater (UWW) men’s wheelchair-basketball team (2006). Courtesy of Gregg Theune, UWW.

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activities) that catered to youths of varying abilities and interests. At the same time, some of the programs did focus on those youths who were interested in playing more competitively, enabling teens like Jeremy (Opie) Lade and Christina Ripp, the third generation in this study, to make the jump to elite-level play more rapidly than their predecessors. Importantly, these youngsters were exposed to mentors and role models who inspired them to excel. Opie recalled watching players like Melvin and Eric practice and learning about the NWBA and the Paralympics and Gold Cup. “That exists? I could do that?” he asked in disbelief. Melvin remembered that even as a young teen Opie showed a lot of potential, that he was the most athletic kid at the camp. “It’ll take a lot of work,” Melvin told him. “But if you’re willing to keep at it, you can do it.” Over time, Melvin became a mentor to Opie, imparting his knowledge about wheelchair basketball and, more generally, about living as a person with a disability. In turn, when Opie got older and established himself as an elite player, he became a mentor to those who were younger than him, contributing to what might be called a “chain of mentorship” that became part of the institutional culture of the UWW wheelchair-basketball program.

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PART

II

Life Histories of Wheelchair-Basketball Players

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CHAPTER

4

The First Generation

In Chapter 1, I raised the controversy of the so-called supercrip athlete that is prevalent in the disability-studies literature and the disability community. Although some may view such athletes as positive role models, as empowering figures for people with disabilities, others view them as disempowering, because they set the bar too high for people with disabilities, create unrealistic expectations about what people can achieve, and create a false impression that the types of reforms advocated by proponents of the social model of disability are unnecessary. As a result of my research with competitive wheelchair athletes, however, I have come to the conclusion that this critique is misconstrued. It’s not that I didn’t discover some disempowering elements of the supercrip phenomenon. It’s that a cavalier dismissal of these athletes fails to appreciate that they did not “make it” on their own. While they most certainly deserve credit for their hard work, perseverance, and accomplishments in the face of adversity, their lives must be understood in social context—the actions they took were enabled by significant others and institutional resources that were available to them during their lives (Berger 2005, 2008a; Juette and Berger 2008). Elsewhere, I have argued that life-history research would benefit from a more explicit engagement with sociological theorizing about social structure and personal agency, the two foundational or presuppositional categories of generalized sociological discourse (Berger 2008a).1 At the risk of oversimplification, a brief consideration of these concepts would be helpful as a framework for narrating the life histories of the players who participated in this study. Later, in Part III, I will flesh out the implications of this

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framework more fully, when I more directly explore other sociological issues that were raised in the interviews. Sociologists use the concept of social structure to refer to patterns of social interaction and institutional relationships that endure over time and that enable or constrain people’s choice and opportunities. Social structures are, in a sense, external to individuals insofar as they are not of their own making and exist prior to their engagement with the world. At the same time, social structures do not operate independently of personal agency. They are ongoing accomplishments of people whose agentive actions reproduce them in specific situational contexts. Moreover, people are not mere dupes or passive recipients of social structures; they are thinking, self-reflexive beings who are capable of assessing their circumstances and choosing among alternative courses of actions (Sandstrom et al. 2006). Through this capacity for personal agency, they exercise a degree of control over their lives and at times even manage to transform or reconfigure the social relationships in which they are enmeshed. In social-psychological terms, such persons may be characterized as engaging in self-efficacious actions, as causal agents who are capable of acting upon rather than merely reacting to their external circumstances (Bandura 1997; Gecas 1989; Gecas and Schwalbe 1983; Maddux 1995). Importantly, however, social structures are potentially both enabling and disabling influences on agentive action. People “are born with only a highly generalized capacity for agency, analogous to their ability to use language,” and the actualization of this capacity is formed by the specific range of structural resources (both interpersonal and institutional) available in their social milieu (Sewell 1992: 20).2 Clearly, the disability-rights movement has helped reconfigure the structural context in which people with disabilities are now able to exercise their agentive capacity to envision and enact successful life outcomes that move them beyond stigma and pity. For most of the people I interviewed in this study, however, it was not rights per se but involvement in disability sports that provided the crucial link between their personal circumstances and the affirmative goals of the movement. Disability sports, and wheelchair basketball in particular, were practical resources appropriated by individuals to enhance their personal attributes and to constructively engage a society in which the disability experience is often misrepresented, stigmatized, and feared. The chance to play wheelchair basketball is, of course, a structural opportunity that was not of these individuals’ own making; rather, it is a product of those who came before, of those who worked to develop institutionalized avenues of athletic competition for the disabled. At the same time, the athletes in this study were to some extent in control of their

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own destiny insofar as they made a conscious decision to invest time and energy into this particular sphere of social activity. Importantly, as we also shall see, family relationships positively impacted the development of personal agency or self-efficacy of most (but not all) of the people in this study, as other disability research has found (Engel and Munger 2003; Marshak et al. 1999).3 But even in cases where supportive family relationships were lacking, the judicious intervention of non-familial mentors and role models were key to the agentive capacity that helped them to negotiate their life circumstances in a way that prevented their physical impairments from becoming disabilities. Ron Lykins, the University of Wisconsin-Whitewater (UWW) coach I mentioned in Chapter 3, is a case in point. All three of the players whose stories I tell in this chapter—Melvin Juette, Eric Barber, and Mike Frogley—told me that they had benefited immensely from Lykins’s mentoring, in spite of the fact that they did not always like his hard-nosed manner and tough disciplinary techniques. I have grouped Melvin, Eric, and Mike under the category of “first generation” players because they were the first at UWW to become members of national teams that compete in the Paralympics and Gold Cup—Melvin and Eric on the US team and Mike on the Canadian team. In this sense, they broke new ground for the program and elevated expectations of what subsequent players could achieve. All three of them eventually became mentors and role models for others, as they continue to be to this very day.

Melvin Juette4 Melvin Juette was born in the city of Chicago in 1969 and lived most of his youth on the city’s South Side. He was an athletic youth, lean and muscular, who liked to play football, baseball, and basketball. In high school he ran the 40-yard dash in 4.2 seconds. He played on and off on his highschool football team, quitting the team several times because he did not have the discipline to stick with it. The coach only put up with him because the team was better when Melvin played. The Juette family could be considered working class—Melvin’s father worked for the Ford Motor Company and his mother in retail sales—but the neighborhood in which they lived was close enough to the poverty areas of the city to be influenced by the street culture of that milieu. Although Melvin’s parents raised him to appreciate the values of family obligation, community of church, and commitment to education, they could not shield him from the travails of the streets (see Anderson 1999). As a youth, Melvin had a proclivity for fighting, which was a useful skill in the “might makes right” culture of his peers. As he got older, he became increasingly

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embroiled in the city’s notorious gang scene, although even then he continued to do well in school and to attend church regularly. When Melvin was sixteen years old, he was shot in the back in a gang dispute. A small, 22-caliber bullet pierced his lower back, ricocheting inside his body and lodging in his tailbone. Although the spinal cord was not severed, the nerves around it were damaged. In medical parlance, his injury was “incomplete,” leaving him with some use of his hip muscles and some sensation in his lower buttocks. Nonetheless, the injury left Melvin unable to walk. The doctors decided against trying to remove the bullet because they feared this might cause even more damage to Melvin’s spine. They told Melvin and his parents that there was a chance that the bullet, over time, might become dislodged on its own, and then his prospects of walking might improve. Thus, at first, Melvin and his parents did not fully appreciate the permanency of his condition. While Melvin was recuperating at the Rehabilitation Institute of Chicago (RIC), he started using a wheelchair, which was an epiphanal moment for him. As he recalled: That’s when it hit me that I’d probably . . . [need] a wheelchair for the rest of my life. It was a reality check, and I was scared to death. . . . I had lost control of my bladder and had to learn to use a catheter to urinate. I needed help bathing [and] getting dressed. . . . I felt like a little child . . . [and] realized that I would have to learn all of the little things I had once taken for granted all over again. In spite of this realization, however, Melvin decided that he “wasn’t going to give into self-pity or despair.” He remembered how he and his friends had reacted to James, a neighborhood youth who had muscular dystrophy. “Although James used a power wheelchair,” Melvin recalled, “we all tried to include him. . . . We even changed the rules for touch football to accommodate him; if the passer hit James with the ball, it was counted as a catch. But James [felt] sorry for himself, and [we] began tiring of his negative attitude” and stopped inviting him to play. Melvin did not want “to end up like James.” People told him that he was in denial about his newly acquired disability, but he was determined to make the best of his situation. Melvin also attributes his positive adjustment to the support he received from his family and friends, as well as to his religious upbringing, which taught him “to accept the things that happened to people [including illness and death] and not mire in regret about what might have been.” It is no small matter that Melvin had the opportunity to undergo a comprehensive program of physical and occupational therapy at RIC, which

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is one of the best facilities in Chicago. Were it not for his father’s medical coverage through his job at Ford, Melvin said he probably would have been sent to a county hospital where he does not think he would have received the same quality of care. Even in the era of disability rights, money matters. At the same time, Melvin made a conscious decision to exercise his agentive capacity that was enabled by this structural context. As he said, “I realized that . . . I needed to . . . learn how my new body worked, and do whatever it took to make it work better.” Melvin described RIC as his “therapeutic boot camp,” where the regimen “was hard, grueling at times, but I could see that I was making a lot of progress.” As part of his rehab, Melvin started to learn how to use a wheelchair. And when he saw another patient pop a wheelie and do tricks in his chair, he thought, “If I’m going to be in a wheelchair, I want to get really good at using it.” It also was at RIC that Melvin was introduced to wheelchair basketball. Bob Trotter, the therapeutic coordinator and coach of the juniors’ team sponsored by RIC, asked if he would like to play in a game. Melvin accepted the invitation, and when he arrived at the gym in his conventional hospital wheelchair, he found the other players using lightweight sports chairs. They also were in much better physical condition. When Trotter put Melvin into the game, he trailed the other players the entire time. “By the time I got to one end of the court,” he recalled, “the shot had already been taken” and the others were heading in the opposite direction. “No one would pass me the ball. When [someone] finally did, I threw up a shot as I fell backwards in my chair. Miraculously the ball went in!” Melvin said he was “pumped.” That night, as I lay in bed, my mind was racing about the prospect of playing . . . sports again. The guys on the team were so full of life. . . . It made me feel good just to be around them, to have peers who . . . showed me that a disability didn’t have to stop me from leading a physically active life. A few weeks later, after Melvin began playing regularly with the RIC juniors’ team, Trotter took him to see a game played by the Chicago Sidewinders, which Melvin said was one of the best teams in the nation at that time. Melvin said his “head ping-ponged back and forth in disbelief ” as he watched the players push their chairs at breakneck speed up and down the court. “On a fast break, a player would throw a behind-the-back pass to a teammate who’d lay it up into the basket with an underhand scoop or overthe-head shot.” It was another epiphany, for “it was at that moment,” Melvin said, “that I knew what I wanted to do—to be as good as these men, to be like Mike, one of the best in the world.”5 This dream was to carry Melvin far. But he had yet to realize how much hard work it would

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take. To reach the elite level of wheelchair basketball, as in any other sport, would not just mean countless hours of training and practice to improve his physical conditioning and playing skills, but the total transformation of his mindset. Melvin, who had been an athlete before acquiring his disability, emerged as the best player on the RIC juniors’ team. He started to attract the attention of college scouts, Ron Lykins among them. Lykins persuaded him to enroll at UWW and to play basketball with the Rolling Warhawks. Melvin had been a fairly good student in his pre-college years, but the Chicago public-school system is not particularly demanding. Moreover, after his injury, he had been forced to attend a special school where the city of Chicago segregated all the students with disabilities, physical and cognitive abilities alike. Melvin resented being “treated like someone who was mentally disabled” when he was placed in classes with students who “just stared into space and drooled” and who “didn’t seem capable of learning anything.” Additionally, his high-school guidance counselor told him, “You don’t need to go to [college]. You’re just going to be disappointed. Why don’t you collect social security and let the Government take care of you.” Melvin did not take his guidance counselor’s advice, but neither was he well prepared for college work. To make matters worse, he had not fully extricated himself from his gang associates, and during his freshman year he returned home almost every weekend. (Whitewater, as noted earlier, is only two hours by car from Chicago.) By the end of the school year, Melvin found himself on academic probation and on the verge of dropping out of school. Lykins advised him that he had better enroll in summer school to improve his grade point average. Melvin enrolled in a study-skills course taught by Allen Einerson, a counselor in the university’s Academic Support Services, who taught him study skills and time-management techniques. When Melvin told Einerson that he “had never read a book from cover to cover,” Einerson accompanied him to the university library and told him to pick out something that he might like to read. Melvin chose The Godfather, followed by another Mafia novel, and his interest in reading began to grow. As a result of his work with Einerson, Melvin was better prepared to succeed when the fall semester began. He managed to stay ahead of the assigned readings and to ask questions in class when something came up that he did not understand. Gradually, Melvin felt that a whole new world was opening to him. In his criminology class, he was exposed to the concept of black-on-black crime, something he had never really thought about before. One of his philosophy professors posed the question, “Does God exist? How do you know? How do you know that what you know is true?” When Melvin returned to Chicago, he was excited to tell his old friends about what he was learning. But they dismissed him with remarks such as

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“Man, you soundin’ white. Why you . . . tryin’ to use all them big words on us?” It was at this point that Melvin realized that he needed to make a clean break from his past, and when he returned to Whitewater he began working even harder on his basketball game, spending hours in the gym lifting weights, shooting baskets, and practicing fundamentals. In the 1990–1 season, the Rolling Warhawks made it to the collegiate championship game. Although UWW lost, Melvin’s play that year attracted national attention. He was invited by Harry Vines, coach of the Arkansas Rolling Razorbacks and the US team that was to compete in the Paralympics in Barcelona, Spain in 1992, to try out for the team. “It was an honor just to be invited,” Melvin told me. “I’d been working really hard . . . [and] thought I was a lock to make the team.” Melvin was devastated when he “didn’t make the cut.” At first, he thought that the selection process was rigged, because none of the rookies at the tryout made the team. But then he thought, maybe that wasn’t the problem. He had to take responsibility for his own actions. He had not really prepared as hard as he could have. His shooting and ball-handling still needed work. His physical conditioning could have been better. Mentally, he said, “I had yet to become a true student of the game.” After taking some time out from basketball, Melvin rededicated himself to make the US team that would compete in the Gold Cup tournament in Edmonton, Alberta in 1994. Melvin was already an avid reader of Sports ’N Spokes magazine, the first copy of which he had picked up at RIC, where he learned about some of the great legends of the game. But it was at this point in his life that he also started reading a number of self-help books to improve his mental concentration through various motivational and visualization techniques. One of his favorite books, which he shared with me, is called Thinking Body, Dancing Mind: TaoSports for Extraordinary Performance in Athletics, Business, and Life (Al Huang and Lynch 1992).6 In this book, the authors describe sports as an “arena for the ongoing development of internal, psychological strengths” (1992: 10). They teach that the athlete should have the “courage to risk failure, learn from setbacks, and forge ahead . . . [viewing] competitors as partners who facilitate improvement” (1992: 11). Melvin also recited several mottos that he picked up along the way, such as one that seemed to be a paraphrasing of Goethe— “It’s not doing what you like to do but liking what you have to do that makes a world of difference”—to which he added, “Good things come to those who wait, but here’s a rule that’s slicker. It’s what you do while you wait that gets you there much quicker.” “Looking back at the 1992 tryout,” Melvin told me, “I realized that I hadn’t done anything to stand out in the coach’s mind. A coach wants to be able to say to himself: ‘that player . . . brings something special to this

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Figure 4.1 Melvin Juette taking a shot at the 2001 NWBA United States Basketball Festival in Whitewater, Wisconsin. Copyright © 2001 Paralyzed Veterans of America, by permission of Sports ’N Spokes.

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team.’” Melvin had played against the coach of the 1994 US team, Brad Hedrick, when Hedrick coached the University of Illinois (U of I) collegiate team. I knew the system that Brad wanted to run and what he looked for in his athletes. He liked players who were quick, who hustled and were tenacious on defense. I decided to transform my game to give Brad a reason to [select] me. . . . I would become a defensive specialist . . . [and] give Brad something no one else could. This time Melvin made the US team—and several others thereafter—and was on his way to establishing himself as one of the best defensive players in the game. He has not been the go-to glory guy who scores all the points— although he has had some games where that was the case—but when a coach needs someone to “lock down” an opposing player, Melvin is the one he turns to. To this day, Hedrick describes Melvin as one of the most “fundamentally sound” players he has ever seen. Melvin resists those who read his life as a tragedy, and his account does not conform to some preordained therapeutic scheme of grieving over loss—such as Elisabeth Kübler-Ross’s (1967) stages of denial, anger, bargaining, depression, and acceptance—that others might want to impose on his experience. As John Hockenberry, who was paralyzed in a car accident during his teenage years, writes, “Formulae for . . . grief efface the possibility that we might each discover our own way through difficulty, and by doing so reclaim our lives” (1995: 86). Thus, Melvin often says that his paralysis “was both the worse and best thing that happened” to him. If he had not been shot, he would have “probably ended up in prison or been killed, like so many of [his] former gang associates,” friends and enemies alike. He would have never gone on to college—he earned a Bachelor’s degree in social work and works as a probation and parole agent—or traveled to Europe, Australia, and Japan where he has played in the Paralympics and Gold Cup. As Melvin told me: In basketball we say that winning sometimes comes down to who wants it more and that success is defined by how far you bounce back up after you fall. I would not change anything about my life. Everything that’s happened to me I’ve had to experience to get me to where and who I am today.

Eric Barber Eric Barber, born in 1970, also grew up in the city of Chicago. He lived with his mother, who worked for the US Post Office, and at times also with

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his aunt and grandmother. For much of his early life he was surrounded by a large extended network of relatives who lived within two or three blocks of his home. Unlike Melvin, Eric was born with his disability, scoliosis, an abnormal curvature of the spine. He assumes that he inherited his condition from his father, who also has scoliosis. Eric’s father does not use any assistive devices for mobility, but Eric had a more severe case. When he was three years old, Eric’s doctors became concerned about fluid build-up in his spinal column that could cause his brain to hemorrhage and cost him his life, and they decided they needed to operate on his spine to correct the problem. Eric said that the doctors “kind of knew going into the surgery that because of the curvature and angles of the spine that paralysis could be a result. . . . It’s just one of those things where you have no choice but to accept the risks and hope for the best.” As a result of the surgery, Eric has had to use assistive devices for mobility. When Eric was young, he had an old-style wheelchair, which he thinks must have weighed over 50 pounds and was difficult to maneuver. At home it was easier to just crawl to get where he needed to go. He fondly remembered riding in a “whiz wheel” toy, an oval-shaped apparatus that had two huge wheels controlled by a crank that enabled him to move forward or backward, left or right, or spin in a 360-degree circle. For a time, when he was eight or nine years old, he wore leg braces and walked with a walker or crutches. When he was about eleven or twelve, when the lighter-model wheelchairs became available, he started using a chair more regularly. Because of his disability, Eric was sheltered from the street scene that occupied much of Melvin’s early life. However, Eric did not think too much about his disability at the time. To him, it was just the way things were, and he does not recall having difficulty accepting his condition. Until high school, he attended a special school for children with disabilities and thought that most other kids had to face the same challenges as he did. As he explained, “Because of the way my family treated me . . . it took me a while to realize that I was different, . . . to understand that I have [a] disability . . . that would keep me from doing certain things in my life.” Eric regularly played with a dozen or so of his cousins who never coddled him. He credits them with starting his “love affair with sports . . . because they included [him] in everything they did.” He wrestled with them and played baseball and football in his whiz wheel or wheelchair. He batted in his chair and pitched or played the outfield, and he ran pass patterns or played quarterback. He even got tackled in his chair! Eric told me, “I don’t know if they really thought of me as disabled—if it crossed their minds or if they thought they were doing something noble. . . . [But] they treated me as a player like everyone else, . . . not as their cousin with a disability.”

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Like Melvin, Eric also had a positive experience with RIC, which he said “was hugely instrumental in teaching [him] how to live with a disability— with everyday things, getting dressed, bathing, . . . things like that.” Most of the time he went to RIC on an outpatient basis, but occasionally he stayed for three to four months at a time to receive daily physical and occupational therapy. Unlike Melvin, however, Eric did not have to relearn the skills that able-bodied people take for granted because he “was still on that upward learning curve” of learning how to do things for the first time. For this reason, Eric thinks that it is easier to be born with a disability rather than to acquire one later in life. When Eric was thirteen years old, he spent a few weeks participating in the RIC inpatient “life skills” training program. While he was throwing a Nerf football around with the other patients, the staff complimented him on his good eye–hand coordination and how easily he grasped the ball with one hand. (Although Eric was a smaller-than-average youth, he had rather large hands for his age.) They suggested that he look into the wheelchairbasketball program run by Bob Trotter. “You’re a pretty good athlete,” Trotter later told him. “You need to pursue this a little more.” Eric was not initially attracted to the game. In fact, he says he actually “hated” the sport. At his young age, he could not get the ball higher than the rim; and he could not imagine ever making a basket. Thus, he turned to wheelchair softball and track and field instead (racing, shot put, and javelin throwing). Wheelchair sports opened up a whole new world for Eric as he started to travel out of state to participate in tournaments. He especially remembered how thrilling it was the first time he rode in an airplane. He also started to get stronger as he began working out on a regular basis. About basketball, Eric’s father told him, “I used to hate it too. But someday you’re really going to like the sport.” Eric was skeptical. He would listen to basketball games on the transistor radio his father had given him and found it totally boring. “You’ll come around one day,” his father said. “Trust me on this.” About a year later, Eric and his mother moved to the suburb of Palo Hills, about twenty minutes southwest of Chicago, which was closer to his mother’s job at the Post Office. There was no place nearby to practice track and field, but there was a park with an asphalt basketball court just down the street. After his mother bought him a basketball for Christmas, Eric started spending seven or eight hours a day on the court. He played pickup games with other youths who came and went, but he realized that basketball was a sport that he could get better at simply by practicing alone. After this, Eric started playing regularly with the RIC juniors’ wheelchairbasketball team, and a dream began to unfold in his mind. Like Melvin, he became an avid reader of Sports ’N Spokes magazine. The stories about wheelchair athletes enthralled him, as he also admired the photographs

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and scrutinized the box scores. “This is something to aspire to,” he thought. “But how can I get there?” Trotter told him, “It’s not a stretch. You can do this. You just have to keep practicing, going to school, doing the things you have to do to make yourself better.” Along the way, in 1987, Eric had one of the most delightful experiences of his life. A television series, a reality show called NBC Sports Fantasy, was airing at the time. Aspiring participants could write the producers and tell them about the sports fantasy they wished they could live out on television. At that time, Eric’s greatest sports fantasy was simply to meet Michael Jordan. This was before Jordan had won his first NBA championship, and he was only just emerging as the international sports celebrity he is today. For kids growing up in Chicago, however, the Chicago Bulls star player was already an icon. Eric realized that simply meeting Jordan would not make for very exciting television, so he wrote to the producers about playing Jordan in a game of wheelchair basketball. The producers liked the idea, and Jordan agreed to play Eric in a one-on-one half-court game. The event was held at Jordan’s basketball camp at Benedictine University in Lisle, Illinois. Before the game, Eric had a chance to talk with Jordan for about forty-five minutes. This conversation alone constituted the greatest thrill of Eric’s young life. Eric said that Jordan “was very down to earth. One of the nicest people I have ever met.” But Jordan assured Eric that he fully intended to win the match. Eric, however, knew that in many respects he had the upper hand, because he had seen able-bodied people who had gotten into a wheelchair for the first time and had been unable to maneuver themselves or shoot anything but air balls. Still, Eric realized that he was playing no ordinary able-bodied person. He was playing Michael Jordan! The producers established the rules of the game. Each basket would count for 2 points, and the first player to reach 20 would win. As Eric recalled: Jordan took the first shot and missed a short 10–12 footer. It hit the back iron and caromed off to the right. I tracked it down right away and threw up [a 15-foot shot] that went in. . . . From that moment, I don’t think I missed a shot . . . [until] the score was 14 to 2. Eric had by now become such an outstanding shooter that his RIC teammates had nicknamed him E-Money, because his shot was like money in the bank. But his real advantage over Jordan was his quickness. Eric got to the ball before Jordan had a chance to react, pushed his chair to a part of the court where Jordan could not reach him and took advantage of the open shot. Thinking he was dominating Jordan, Eric put himself on “cruise control” and started to relax. But Jordan finally “got it together.”

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I don’t know where it came from . . . [but] he figured out how to move the chair. . . . He was pretty tall . . . [and] with just his torso . . . he towered over me. . . . He started posting me up and making bank shots, and before I knew it the score was 14 to 10. Eric realized that he had to refocus and “finish him off somehow.” He continued to make his shots and won the game by a score of 20 to 14.

Figure 4.2 Eric Barber taking a fall at the 2002 NWBA Wheelchair Basketball Tournament in Champaign, Illinois. Copyright © 2002 Paralyzed Veterans of America, by permission of Sports ’N Spokes, photo by Mark Cowan.

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I asked Eric if he is the only person in the world who has ever beaten Michael Jordan in a game of one-on-one basketball. He replied, “His older brother used to beat him . . . [and] I still put up a disclaimer because I beat him before he won all of his championships.” During high school, Eric thought he would like to attend college at U of I. It was not too far from Chicago, and, like UWW, it was known for being an accessible campus and having an outstanding wheelchair sports program. Brad Hedrick, the coach of the U of I team, talked to Eric a few times about playing for him. But Hedrick never followed up on his promises to help Eric work out the scholarship and financial package Eric needed to attend. Eric took this to mean that Hedrick was not particularly interested in recruiting him. And although Eric was an excellent student —and unlike Melvin, an avid reader all his life—he also wonders whether Hedrick was skeptical about a black student’s ability to succeed academically at U of I, which is a big-ten university that has higher academic standards than UWW. In the meantime, Eric was flattered when Lykins started to recruit him heavily to come to UWW. Eric had learned about UWW from Melvin, who had been one of his teammates at RIC. Eric was impressed with how much Melvin’s basketball skills had improved in such a short period of time under Lykins’s coaching. When UWW was able to put together an attractive financial aid package, including an out-of-state tuition waiver, Eric decided to take the plunge. He enrolled in the university in 1989 and went on to receive an undergraduate degree in communication and a graduate degree in business administration with a specialization in human resources. He made the first of several US national teams in 1998 and is currently working in the human-resources field. Eric credits his success in life to the people around him: his mother and extended family, the professionals at RIC, his coaches, and others. He is especially grateful to his many cousins, who did not treat him differently because of his physical impairment. Illustrating my point about the experience of so-called supercrips, Eric said, “I’m nothing more than the by-product of the people in my life. They have made me who I am.”

Mike Frogley Mike Frogley, who is affectionately called Frog by his friends and colleagues, was born in the Canadian province of Prince Edward Island in 1965. His father was in the military so his family moved around a lot, eventually settling on the mainland in Ottawa, Ontario. Mike was raised by his parents to thrive on competition and to strive for excellence. His father graduated from military college with a degree in electrical engineering. His mother was an economist, and a licensed pilot, at a time when few women were involved

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in either of these pursuits. They instilled in Mike conventional values of hard work. His father taught him that there were three things he needed, and particular amounts of each, to be successful in life: “a pinch of luck, a cupful of talent, and a bucketful of hard work.” It was fortunate, his father added, that the one thing Mike had the greatest control over was the bucketful of hard work. In sociological terms, Mike’s father privileged agency over structure. Consequently, as Mike told me, “I’ve always been motivated to do the best that I can at whatever I’m doing. I can’t just be okay at something. I’m going to try to do it better than anybody else. It’s a trait that was ingrained in me by my parents that drives me to this very day.” Like so many other boys, sports were Mike’s passion as a youth. Ice hockey is clearly the dominant sport in Canada, almost a religion. But Mike never got fully indoctrinated into this sacred tradition, in part because of his father’s military posting in Washington, DC, where he was exposed to baseball and football, the two sports that he initially liked the best. Upon returning to Canada, his parents enrolled him in a summer sports camp, where he was also introduced to volleyball, soccer, and basketball. For some reason, Mike was especially enamored with basketball. He is not really sure why because, as he said, “I wasn’t very good at all.” There was an outdoor asphalt court about a mile away from his home that was on the path he took to and from the middle school he attended. He began frequenting the court daily on his way home from school and after supper, playing in pick-up games or practicing on his own if no one else was around. Mike often played basketball with older youths who beat him on a regular basis. Rather than become discouraged, however, he was determined to try harder to overcome his deficits. He analyzed the weaknesses in his game and worked to improve those skills. When he realized that his opponents were overplaying him to his right, because he dribbled to the basket with his right hand, he worked on his left-handed lay-up. When he realized they were playing him loose to prevent him from driving to the basket, he worked on his outside shot. His mentality was, “Okay, you might beat me today. But I’m going to keep working, and one day I’m going to beat you.” He admits that his hypercompetitiveness made him a sore loser at times. “I just hate to lose,” he said. “Winning is everything to me.” As Mike got better at basketball, he would go over to the high school and even to the local college to find bigger and better youths to play against. He was always looking for new and more challenging ways to compete. Eventually, he became the starting shooting guard on his high-school basketball team, not a superstar but a solid double-figure a game scorer. He described himself as the “consummate gym rat,” the first one in the gym in the morning and the last one out at night. “I just played and played and played,” he said.

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Mike’s parents expected him to get a college education, and after high school he enrolled in nearby Carleton University as a matter of course. He found himself drifting mentally, however, because he was not sure what he wanted to study or do with the rest of his life. He tried math, accounting, and economics; he was good at all of these subjects, but he did not have a passion for any of them. After enrolling as a full-time reservist in the Canadian military, he thought he had found his calling. The idea of being a leader of men appealed to him, and he decided to pursue a career as a commissioned officer in the Navy. But something unexpected happened to Mike before he got to officertraining school. It was June 1986. He and a couple of friends decided to drive up to the country cabin his father owned just north of Ottawa. (By now his parents had divorced.) As he recalled, “It was a spur-of-themoment type of thing, go up to the cottage and do some fishing and partying and just hang out.” The three youths hopped into Mike’s Fiat Spider, a hot little convertible he had bought a year earlier. The three young men decided to see how fast they could drive up to the cottage. Typically an hour’s ride, Mike’s brother had set the record at fortyfive minutes. They were racing through winding, rolling hills making great time, with speeds approaching 125 miles per hour at certain stretches. As they approached the last curve, about 5 miles from their destination, just twenty-nine minutes had elapsed. The rest of the road was a straight-away that led right up to the cottage, so they were assured of breaking the record. Around the last bend, Mike lost control of the car as it spun into a ditch. No one was wearing seatbelts. His two friends were thrown from the vehicle; they were scraped and bruised but not seriously hurt. Mike fell partly out of the car, and as his body twisted around, the vehicle rolled over his back. Mike tried to move, but he could not. He called over to one of his friends. “Can you see if my legs, my feet, are moving?” he asked. “Sorry Mike, they’re not,” his friend said, looking away in regret. Mike realized what this meant. Mike’s spine was fractured at the T4 level, paralyzing him from the chest down. The surgeon at Ottawa General Hospital, a specialist in spinal-cord injuries, implanted a 12-inch, pencil-like stainless-steel rod on each side of his spine. The rods, positioned between the T1 and T10 vertebrae, function like splints, enabling Mike to sit erect in a wheelchair. People with comparable injuries who do not have these rods, or who have rods that are shorter than the ones implanted in Mike, tend to slouch in their chairs with their shoulders rolled forward. This poor posture can cause health problems down the road as added pressure is placed on the internal organs. Mike thinks that the rods also have an added benefit, because the ability to sit upright enables him to project an appearance of steadfastness and self-assurance.

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Mike is appreciative of the excellent treatment he believes he received through the Canadian healthcare system. The surgeon was one of the best in his field, and the nurses and rehabilitative staff were outstanding. They gave him the support and individualized attention he needed but did not pamper him, helping him to learn how his new body worked and how to maximize his independence within the context of his newly acquired impairment. Like Melvin, Mike initially felt as if he were a newborn baby, because he had to relearn such basic bodily functions as sitting up on his own or reaching for something within his grasp. He had to learn, too, how to bath himself, get dressed, and push, maneuver, and transfer in and out of his wheelchair. But Mike looked at all of this as a challenge, and, like Melvin as well, he did not give in to despair. When he first realized he would not be able to walk again, he “took a deep breath,” he said, “literally for a moment, and got myself together. Life is too short to feel sorry for oneself.” He asked the hospital rehab staff to tell him what he needed to do to get better. If his physical therapist told him he needed to do 500 push-ups a day, he did not do 300 or 400 or 490. He did 500, and then asked if it was alright to do more. This is how he had always lived his life. Why change things now? “There’s no way I’m going to lose at this one,” he thought. About his disability, Mike has the attitude that “I don’t do things worse than anybody else. I just do things differently.” It would have been easy for me to look at myself and say, “being in a wheelchair is not as good as walking.” It’s true that in some places it’s not as good. In a society filled with stairs, a wheelchair is not your number one choice. But if you’re going to be in a shopping mall, which is 100 percent accessible, it’s one of the best ways to get around. . . . The point is that being in a wheelchair is not worse or better, it’s just different. Like Melvin and Eric, Mike was introduced to wheelchair basketball while he was still recuperating in the hospital. At first, he could not get used to being unable to jump or glide through the air while finishing a lay-up. Before his injury, he had had phenomenal range on his jump shot; now he could barely reach the basket. Still, he had not lost his passion for the game, and he wanted to get back into basketball. He thought that coaching might be the way to go, and he called his old high-school coach and asked him for an opportunity to help with the team. The coach agreed. When Mike arrived at the high-school gym for his first practice, he thought about mentioning the obvious fact that here he was, a guy in a wheelchair, coaching a stand-up basketball team. But he decided not to mention it at all. He would answer any questions they had, but this was

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not going to be about him; it was about the players becoming as good as they could be. In addition to coaching, Mike reenrolled at Carleton University and majored in history. He also did volunteer work with the Drive and Survive program sponsored by Texaco Canada, something he had started while in rehab, traveling the country speaking to kids about the adverse consequences of irresponsible driving. By the spring of 1988, Mike was ready to get back into playing basketball again. He began by returning to the old asphalt court where he had first learned to play and started practicing on his own. He found himself getting better and better, able to hit shots from a bit of distance. He went through the same mental and physical process he had gone through before, identifying his weaknesses and working to overcome them. Mike and his mother now lived about three miles away from the court. The house was on the top of a steep hill, and the daily push in his wheelchair down to the court was an easy ride. The return trip was another matter, but the workout built up his strength. He even pushed himself backwards up the hill, intuitively realizing that this would improve the muscular condition of both sides of his body. Mike had the good fortune of meeting Reggie McClellan, who was living in Ottawa at the time. McClellan was one of the best players in the history of Canadian wheelchair basketball and a leading figure in the development of the Canadian Wheelchair Basketball Association (CWBA). McClellan became a mentor to Mike, giving him advice on how to improve his skills and facilitating his involvement with increasingly competitive teams. During a tournament held in Edmonton, Mike also met Brent Foster, the coach of the Canadian national team. Foster liked the way Mike played and invited him to try out for the Canadian national B team. Mike made the team and played in his first international tournament in Stoke Mandeville in England, in 1989. The next year Foster selected Mike for the A team. In just a short time after his accident, Mike had become one of the best wheelchair-basketball players in Canada. During this time, Mike continued working with the high-school basketball team and developed a passion for coaching. He enjoyed imparting his knowledge of the game to others and was always looking for new ways to help players improve their game. He read everything about coaching that he could get his hands on, and, in the course of researching and making inquiries about basketball camps for his players, he received an invitation to attend a week-long (stand-up) basketball coaching clinic offered by Bobby Cremins of the Georgia Institute of Technology in Atlanta. Cremins is one of the most successful college coaches of all time, and Mike was determined to learn as much as he could from someone he considered to be one of the masters of the game. He also wanted to make

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a good impression on Cremins. At the clinic, he woke up at 4:00 A.M., got showered and shaved and waited outside the gym as the sun came up. Cremins was always the first to arrive, and this gave Mike the opportunity to chat with him alone for a while. Mike was in awe of Cremins and soaked in everything he had to say. The next year when Mike returned to the camp, he found himself an insider among some of the best high-school and college basketball coaches in the country. Around this time, Mike also learned about a summer wheelchairbasketball clinic that Ron Lykins was offering at UWW. Mike called Lykins and was disappointed to hear that the dates of the clinic conflicted with a previous commitment he had made. “Is there another time I could come down?” Mike asked. “I still want to learn from you.” Lykins told him, “There’s not going to be a lot of guys around [after the clinic]. What if I come up to you and run a clinic there?” Mike said he would ask around to see if something could be arranged. The Canadian clinic did in fact materialize, and Mike spent a week chauffeuring Lykins around town and getting to know him. Lykins, who was always looking for up-and-coming players to recruit, invited Mike to enroll at UWW to play basketball and to complete his college degree. Mike realized that was a great opportunity and accepted the offer. When Mike arrived in Whitewater to begin the fall 1989 semester, Lykins told him, “You’re the first Canadian player we’ve ever recruited. Don’t fuck it up, or nobody else from Canada will ever be recruited again.” This meant taking care of the academic side of things, too. Mike replied, “Just tell me what I need to do to get better. I’ll do whatever you ask of me.” Lykins put Mike on a weight-lifting program, and he started to get stronger and stronger. When Mike was not working out in the weight room

Figure 4.3 (left to right) Mike Frogley, Melvin Juette, Jeremy (Opie) Lade, and Eric Barber at a NWBA tournament banquet (2005). Courtesy of Melvin Juette.

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or practicing in the gym, he watched hours of basketball videotape. From the time he got up in the morning till the time he went to bed at night, he did nothing but attend class, study, work out and play basketball—seven days a week. He had no social life; he was all business. Mike continued his association with the Canadian national team both as a player and later as a coach. And, after taking over coaching responsibilities at UWW, he eventually went on to U of I, where he is also pursuing a doctorate in kinesiology. Mike, like Melvin and Eric, recognizes that others have been responsible for his success in life. “Nobody’s a self-made man,” he opined, while crediting his parents as well as the people who helped with his post-accident rehabilitation and those who gave him opportunities to play and coach basketball. Mike understands the complaint about the supercrip but does not think it should prevent people from striving for excellence. We all struggle with how we’re going to be perceived. . . . People will say that they don’t want to be compared to a bar they can’t reach. Well, don’t try to reach that bar. . . . You don’t have to compare yourself to me or to a Melvin Juette or an Eric Barber. You define your own dreams. By the same token, don’t diminish the accomplishments of those who have chosen to work hard to achieve their goals. Don’t ignore the sacrifices they’ve made, the hours and hours in the gym practicing, the discipline that it takes to have gotten them where they are. . . . It’s the natural evolution of wheelchair basketball for the athletes . . . to find the level at which they want to participate. . . . That’s what happens in ablebodied sports. We’re starting to filter into the able-bodied model. I will discuss the relationship between able-bodied and disabled-bodied sports further in the concluding chapter of the book.

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CHAPTER

5

The Second Generation

This chapter tells the stories of four individuals from the “second generation” of University of Wisconsin-Whitewater (UWW) players that I interviewed. By the early 1990s, coach Ron Lykins and players like Melvin Juette, Eric Barber, and Mike Frogley had transformed the institutional culture of the UWW wheelchair-basketball program into what Tracy Chenowyth described as a “no-nonsense, give-it-everything-you-got” competitive milieu where players aspire to elite status in the sport.1 To be sure, no one expected every player on the team to be able to reach this level, but everyone was expected to work as hard as they could to maximize their potential, both as basketball players and as people more generally. At this point in the evolution of the program, however, a divide between the players on the team and the other students with disabilities was becoming apparent, and as John Truesdale observed, an element of elitism was starting to creep into the program (see Chapter 3). Some of the players in this chapter reveal and reflect upon these social fissures. We begin with Matt Glowacki, who came to UWW during the end of the Ron Lykins era but who also played after Mike Frogley assumed coaching duties. Although Matt is not an elite basketball player in that he had no desire to achieve the level of skill that would have made him competitive for the US national team, he does have the achievement motivation and personal fervor that is typical of elite athletes; and he has been a member of the US national sit-volleyball team. Next, we have Joe Johnson, an elite player from Canada who has played on the Canadian national team. Joe is also the only player in my sample who at the time of this writing has played

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wheelchair basketball professionally abroad. Dan Ferreira arguably has the competitive drive to be an elite athlete, but he simply did not have the talent due to the limitations of his impairment. However, he does aspire to the elite level of coaching and has been an assistant coach on the US men’s team. Finally, we have Amy Bleile, one of two women in my sample, a nonelite player, who by her own account is probably the most disabled person who ever played wheelchair basketball at UWW. By virtue of being a woman and having a relatively severe impairment, Amy offers a different perspective on some of the issues that are raised by this study. Like the other players in this book, the lives of all four of these individuals can be understood in term of the structure–agency dynamic I outlined in the previous chapter, particularly the ways in which parents and other mentors and role models, as well as institutional opportunities to play disability sports, facilitated self-empowering agentive action.

Matt Glowacki Matt Glowacki was born in the medium-sized city of Janeseville, Wisconsin, in 1973. “When I came out of my mother’s womb with no legs,” he told me, “everyone was taken by surprise. My mother had had a normal pregnancy. She hadn’t taken thalidomide or anything like that. So it was just one of those random occurrences of nature.” Currently Matt’s legs extend just 13 to 14 inches below his pelvis. At the time of Matt’s birth, the doctors were not sure if he would even live, because they were concerned about other complications that might develop. After that worry passed, there was still the matter of the family home. Matt’s parents, both independent business people, had just built a new tri-level house. They thought about selling it but decided against it. Matt would just have to learn how to get up and down the stairs on his own. “I kind of did a shoulder roll up and down the stairs,” Matt said, aided by draw handles that his father installed on the side of the stairs that Matt used to pull himself along. When Matt was a toddler, at a time when other kids his age were walking, he crawled around on the floor. Then his parents bought him a Tonka truck that he laid on and pushed with his hands. After that, he moved on to a skateboard. He also tried prostheses, artificial legs, for a while, but they felt unnatural and he did not like them. Nonetheless, Matt wore the prostheses on and off for about nine years in school. By the ninth grade, however, he started incorporating a wheelchair into his repertoire of assistive devices. During the years of Matt’s youth, the conventional thinking was that amputees or other people without limbs should wear prostheses so they could look like everybody else. In fact, the doctors told Matt that in order

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to grow up “normal,” he needed to be as tall as the other kids. Matt thinks that prostheses might be more suitable for amputees who have their knees intact. In that case, one could probably walk as well with artificial legs as without them. But because Matt’s legs are too short, they do not serve as effective levers that allow him to manipulate the prostheses. If he used them, he would have to walk with crutches, which would be slower than the wheelchair he uses today. Matt looks at prostheses like a toupee, something you wear for appearance but that has no functionality for people like himself. As a youth, Matt never played any sports, although he was active in a variety of other pursuits at school: drama, the debate team, and choir. He earned the rank of Eagle Scout in the Boy Scouts, and in high school he was an announcer for football and basketball games and wrestling matches. He also was on his high-school cheerleading squad, participating in pyramids and other difficult routines, for which he received an athletic letter. Everyone in Matt’s family is involved in small business, and when he was just fifteen years old, Matt started his own deejay business, at one time doing about fifty events a year. In 1991 he decided to enroll at nearby UWW, which had a reputation as an outstanding business school, to learn more about running a business. Both of his parents and his sister had gone there, so it was a “no brainer” for him. It was just prior to enrolling at UWW that Matt decided to become involved in wheelchair basketball. He felt that he was overweight and needed more physical activity to lose it, if only to make his clothes fit better. He went over to Roseman Building, the campus facility that houses Disabled Student Services (DSS)2 and the wheelchair-basketball gym, and watched some of the guys scrimmaging. At first glance, he thought, “That’s not very hard. I can do that.” Later when he started playing, however, he realized, “Whoa, it’s harder than you think.” He was able to push his wheelchair fast up and down the court, but he had no idea what to do when he got to his destination. Melvin Juette, who still played for the team, gave him the nickname, “Wild Thing,” because he seemed out of control much of the time. As noted earlier, Matt was not too fond of Ron Lykins’s coaching methods. Neither was he enamored with the game, and he had no intention of ever becoming an elite player. Several times he almost quit, but Mike Frogley encouraged him to stay. And after Mike took over coaching responsibilities, Matt thrived in the role of fundraiser for the program. Mike had come up with the idea of players going out into the community and giving wheelchair-basketball demonstrations at schools and other venues for a fee or donation. He called this the Cornerstones for Success program. Mike arranged for Matt to be paid for conducting the demonstrations, and Matt estimates that he averaged two to three demonstrations a week. This also

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was the beginning of Matt’s career as a motivational speaker, although he prefers the term “informational lecturer,” since, he said, “you can’t really motivate someone who doesn’t want to be motivated.” Currently he also earns a living by designing wheelchairs tailored to particular lifestyles and, as noted earlier, he has been a member of the US national sit-volleyball team, a game that is well suited for amputees and people without legs.3 Matt showed me a flyer entitled Expectations that he distributes to advertise his speaking presentations.4 On the front cover, Matt is pictured in rock-climbing gear climbing up the side of a cliff; on the back cover he is balancing himself with his hands on two rocks at the mountain’s peak; and inside the flyer he is pictured lifting heavy weights and playing with the US volleyball team. In the text that is printed inside the flyer, Matt writes about “expectations” in ways that implicitly acknowledge issues of structure and agency. Expectations are the guideposts to reaching potential. . . . When the expectations for an individual are based on perceived inabilities, or disability, it prevents that person from realizing their own potential and developing self-esteem. This is also true for the able-bodied community. . . . Look back at the people who have made a difference in your life; most likely, they are people who saw something in you that you could not see for yourself. They helped you develop and nurture your potential, and because of their expectation, you experienced success in a new area. . . . Matt Glowacki knows how important high expectations are for everyone, because in many situations, out of compassion, expectations are lowered for people with a disability. . . . Through the way Matt lives his life, he proves that real compassion is a level playing field with high expectations for everyone, not excuses for someone’s inability. Matt expounded upon his views regarding the real meaning of compassion by offering a critique of the DSS program at Whitewater, which he thinks in some instances has done students with disabilities a disservice by coddling them and making it more difficult for them to “make it in the real world.” He also said that he thought that some people with disabilities lack initiative and fail to take advantage of the opportunities that are currently available for them. The disabled community is an exact replica of any other minority community. And the biggest problem with that fact is that once you get the rights, the hardest thing to do is to encourage people to use those rights. So you can solicit the community to put in

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Figure 5.1 Matt Glowacki climbing the side of a cliff at Devil’s Lake, Wisconsin. Courtesy of Matt Glowacki.

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curb cuts. And you can solicit the community to pay for a college education for disabled people. But if there’s no end game that says, okay, we’ve cut the curbs, we’ve given you a college education, now go out and use that, what’s the point? They’re still the same people who’ve been accommodated all their life. And now they’ve been accommodated even more. . . . Whitewater has created a wonderful little Disney World for people with disabilities. They do everything for them. There was a guy who started school with me. When I graduated, he still didn’t have his degree. He got so fat. Before, he was capable of doing a lot of things for himself. When he came to college he pushed his own chair. By the time I graduated, he was using a power chair because he never used his muscles. He was more disabled than when he came. It was scary. Perhaps for these reasons, Matt told me that he does not identify with or want to associate with other people with disabilities. “I don’t have a lot in common with those people,” he said. “Just because a person has a disability doesn’t mean I want to be their friend. Even the people who play sports, I don’t socialize with them at all.” We will consider the issue of disability identity and divisions in the disability community more fully later in the book. But in Matt’s view the key point is this: Just because someone has a preconceived limitation, it has no relationship to his or her potential. . . . People may have diverse backgrounds and diverse experiences, [but] the characteristics of a successful person are the same. . . . By not challenging someone’s ideas of what they can accomplish, you are cheating them out of future rewards. (From Expectations) In sociological terms, Matt seems to understand that social structures may be potentially empowering or disempowering. At the same time, like others in this study, he privileges agency over structure in his analysis of disability and has little patience with those who might be inclined to view people with disabilities as victims of society.

Joe Johnson Joe Johnson was born in Winnipeg, Manitoba, in 1975, and grew up in the neighboring small town of Laurier. His father worked as a manager for a major electronics firm, and his mother worked as a teacher’s aide. Joe was a typically active youth, playing all kinds of sports. But hockey, not surprisingly, was his obsession. In addition to ice hockey, he played floor

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hockey, lawn hockey, and street hockey—as Joe said, “Any form of hockey I could get my hands on.” During the winter months, Joe also enjoyed snowball fights with other youths. But in the summer, this type of combat became more perilous, because the boys fired rocks at each other with homemade slingshots constructed out of a two-by-four with a clothespin and a piece of elastic fastened to the wood with a nail. During the summer of his eighth year, the elastic on Joe’s slingshot pulled the nail from the board and punctured him in the eye. He was in the hospital for three weeks and had to miss most of the summer-long hockey camps he had hoped to attend. Joe was in danger of losing his vision entirely, but he made a full recovery. When Joe returned for the last week of hockey camp after a summer of relative inactivity, his coaches and parents noticed that his leg seemed to be turning inward and that he was walking with a limp. Joe started experiencing pain when he walked and had difficulty making his daily oneand-a-half block route to school and back. Joe was diagnosed with Legg-Calvé-Perthes (LCP) disease, a degenerative disease of the hip bone caused by a lack of blood flowing to the femur that causes the bone to become brittle and to deteriorate. Because of pain in his hip, Joe had to use a wheelchair for mobility for about a year and crutches and braces for two years after that. Over time, as is sometimes the case with LCP, the blood flow returned and the bone started to regenerate, though not fully. Joe permanently lost about a quarter of his femur, and he incurred a lot of scar tissue in his hip joint, which reduced his range of motion considerably and restricted his mobility. Over the years, Joe has had a few muscle release operations (in his hip flexors, lower abs, and groin) that have given him more flexibility, and he is able to walk without assistive devices. He still experiences periodic pain, however, and he occasionally falls when his hips lock unexpectedly. The greatest impact of LCP on Joe’s life was his inability to play conventional sports, especially because it caused him to become isolated from his friends who still played. He eventually got into officiating games, just to be around the other guys, but he said “it was hard to take, . . . seeing all of my friends running around and having fun.” Thus, Joe seemed to have had more difficulty adjusting to his acquired disability than Melvin Juette or Mike Frogley did. “I sort of got into a state of depression,” he recalled, “not enough to be clinically diagnosed but enough to worry my parents. I’d come home from school and just go to my bedroom and read books, shut myself out from the rest of the world.” Joe’s parents took him to see a social worker. He remembered just sitting in her office, not wanting to say anything. She eventually got him to talk about his feelings about sports and asked if he would like to be introduced to a man, a double amputee, who knew a lot about wheelchair sports. Joe’s

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first reaction was, “No, I don’t want to do that. That’s not real sports. That’s something disabled people do.” Although Joe was a little upset at the suggestion that he get involved in wheelchair sports, his parents encouraged him to pursue this opportunity. When he arrived at the gym one Saturday morning, he was amazed to see all the other kids in wheelchairs. They played a game of wheelchair tag called British bulldogs, and some basketball and floor hockey. It was the hockey, of course, that hooked Joe, and he soon started playing sledge hockey on ice. In sledge hockey, you sit in sledges, or sleds, supported by blades that allow you to maneuver on the ice. In each hand you hold sticks, which have a spike end for pushing and a blade end for shooting. Joe subsequently joined a sledge-hockey league, but the program soon folded for lack of funding. Slowly but surely, however, Joe came to appreciate that there were many opportunities to play all kinds of wheelchair sports. For a while, he got into wheelchair racing, and then racketball and tennis. But none of these pursuits filled the void in his heart that he felt for missing out on hockey. Joe told me that “one of the biggest things about hockey for [him] was the camaraderie, being around the guys.” And that is why he got involved in wheelchair basketball. Like many other youths, however, Joe did not particularly like it at first because he had trouble getting the ball to reach the rim. He actually thought, “This is the stupidest thing around. We’re all too small and weak. No one’s ever going to hit the hoop.” But the part of the game that reminded him of hockey was the teamwork, a group of guys working together “trying to accomplish a goal.” After a year or two playing juniors’ basketball, Joe started getting pretty good at the game. At thirteen years of age, he was better than most kids his age, and he started to get invited to play with older youths and men in the Canadian Wheelchair Basketball Association (CWBA) seniors’ competitions. Although Joe later became known as one of the best “big men” in the game, at that time he was one of the smaller players, and he relied on his speed to make his mark. He remembered one game in which he scored eight points. Everyone congratulated him: “Holy smokes, Joe, good game!” Here he was, as Joe recalled, “a thirteen-year-old playing against men!” He relished the accolades and thought, “I’m going to stick with this.” Over the next few years, Joe played on the Manitoba provincial team and, through his involvement in Canadian basketball, met Mike Frogley. Mike tried to convince Joe to come to UWW to play, but Joe was reluctant to make the move to the United States. Mike can be a very persuasive individual, and after John Truesdale helped work out a financial arrangement that reduced the out-of-state tuition, Joe came to Whitewater in 1993, where he majored in physical education, never regretting his decision to follow Mike’s advice. It is at UWW where Joe became the world-class player he is today. That is when he started to train hard and become motivated to be

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Figure 5.2 Joe Johnson at the 2006 Gold Cup in Amsterdam. Courtesy of the Organizing Committee of the Gold Cup 2006.

one of the best in the game. He made his first of several Canadian national teams in 1996 and has played professionally in Australia and Germany. Because of the nature of his disability—he does not use a wheelchair in his everyday life—Joe does not identify himself as either able-bodied or disabled. When he first developed LCP, he explained, “I thought, these are not my people.” But after a while, especially after coming to Whitewater, he started to make friends with people who used wheelchairs all the time. Now he feels that he has “the best of both worlds.” He gets to play a sport that he thoroughly enjoys, but at the end of the day, he can park his wheelchair and go wherever he wants to go without it. To be sure, there

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Figure 5.3 Joe at the 2006 Gold Cup in Amsterdam. Courtesy of the Organizing Committee of the Gold Cup 2006.

are some days when his hip or legs bother him more than others and it is difficult for him to walk without limping. On those days, he uses his handicapped parking placard. But on other days, when he is feeling fine, he will pass up the open handicapped spaces and look for a regular spot, even if it means walking a longer distance. Joe’s remarks reveal the protean nature of disability identity and suggest an element of choice that is involved in identifying with other “persons with disabilities.” But his best-of-both-worlds perspective has in some sense been institutionalized in Canada, where CWBA rules allow able-bodied people to play in Canadian competitions. Joe’s older brother and younger sister,

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who are both able-bodied, have gotten involved in the sport. It is a source of great joy for Joe to be able to share this experience with his siblings. He and his brother, who used to play sports together before the onset of Joe’s disability, can now “compete with each other again . . . on an equal playing field.” And Joe says that his sister has gotten so good at the sport that “everyone in Canada wants her to cut off a toe or something, sacrifice it, so that she can be eligible to play” in international tournaments for the Canadian national women’s team. Joe’s somewhat unique place in the disability community also seems to have allowed him to see through the hierarchies that have been created. He admits that some ball players seem to exude an attitude of hubris that, as I noted in Chapter 2, has also been observed among able-bodied athletes, viewing “themselves as better than the rest of the disabled students on campus.” Joe expressed regret about “the split” that seems to exist, the lack of camaraderie, “among our own population. . . . It’s a hierarchy type of thing. I do think we [all] share a lot of common interests. But it’s going to take a lot of time to get everyone viewing it that way.” Indeed, although the various constituencies of the disabled—those with physical versus cognitive disabilities (and varying types of each), those with more severe versus less severe disabilities, and those who were born with disabilities versus those who acquired disabilities in later life—have at times worked together to seek passage of disability-rights legislation (see Chapter 1), the movement consists of individuals and groups that “may have little in common except the stigma the society imposes on them” (Engel and Munger 2003: 14).

Dan Ferreira Dan Ferreira was born in New Bedford, Massachusetts in 1974 with a genetic disability called osteogenesis imperfecta (OI). OI causes the bones to be weak and brittle and hence susceptible to fracturing. Both his father and younger brother have this condition, which seems to affect only males. When Dan was younger he could not stand on his legs because the bones would break so easily. When he broke the growth plate in his legs, the growing tissue at the end of the long bones, he was destined to be shorter than he might otherwise have been. The doctors have told him that if he had not had OI, he probably would have been 6 foot 2 inches tall rather than the 4 foot 5 inches he is today. Some people with OI are able to walk, although not well, but Dan cannot, in part because he has poor balance. During his youth, Dan told me, “I was always breaking something. I would break my arm, be in a cast, get it taken off, and break my leg two days later.” He has had numerous surgeries over his lifetime, well over 150, and has therefore spent much of his life in the hospital or recovering from an injury.

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As a youth, Dan felt rather estranged from his parents, who divorced when he was young. Dan lived with his mother, an older sister, and a younger sister and brother. They grew up poor, living in housing projects and attending inner-city schools with few resources, especially for kids with disabilities. Dan admits he “was a very angry child,” and no wonder. Not only was there strain with his parents, but the school personnel always downplayed his potential. (They obviously did not share Matt Glowacki’s philosophy about expectations.) Dan remembered an IEP (individualized education plan) meeting where the special-education staff told his mother and him that he would probably manage to muddle his way through school, graduate, and then live with his mother and collect social security for the rest of his life. Then when his mother died, they expected Dan to end up in a public-subsidized nursing home. That was the future others envisioned for him. Consequently, Dan had what he described as “a woeis-me attitude” toward his life. “There’s millions of people in the world,” he thought. “Why me?” Dan became increasingly unhappy in the public-school system. Although he had friends from his neighborhood, he felt alienated from his classmates. He started to “skip school every now and then,” getting into trouble for minor transgressions such as “doing a wheelie in the hallway.” In the eighth grade, he had the opportunity to take a tour of the Massachusetts Hospital School (MHS), a special school for the physically disabled, just twenty minutes outside of Boston in Canton. Dan liked the idea of going to a school where he could be around other youths like himself. He started to realize that there were options for him other than wasting away in New Bedford, and by his sophomore year he enrolled in MHS. At MHS, Dan met other students who had a wide range of disabilities, and he started to think that he was rather fortunate compared to some of his new peers. His first dormitory roommate, a youth named Arthur Leahy, had muscular dystrophy (MD). Dan described Arthur as “an incredibly gifted writer” who suffered from a form of degenerative MD that he knew would very likely cause his death by the time he was in his early twenties. Dan realized that in the “overall scheme of life,” his own disability did not have to stop him from accomplishing what he wanted to do. “This is my life,” he told me. “I wouldn’t be who I am if I wasn’t disabled. . . . You can either dwell on the negative or focus on the positive things you have going for you.” Before attending MHS, Dan had never heard of wheelchair sports outside of the Special Olympics for the cognitively disabled, which he knew was not for him. Now he had the opportunity to pursue all types of sporting activities, beginning with wheelchair football and track racing. He also began lifting weights and building more muscle mass, which protected him but did not completely prevent bone breaks. On one occasion, as he was

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pushing down the football field to receive a pass, the defensive player guarding him clipped him from behind, skimming against the back wheel of Dan’s chair. Dan flipped end-over-end for a few yards, suffering a deep gash on his head and a dislocated shoulder that was “hanging down by my knee.” One of Dan’s good friends at MHS was Sebastian DeFrancesco, who was a Paralympian table-tennis player. Dan often played with him and got so good at the game that he made the US developmental team and traveled to England for a tournament. Then there was basketball, of course, which eventually became his true love. He credits the MHS recreational therapist, Theresa Kelly, for encouraging him in that direction and getting him involved with the newly formed National Wheelchair Basketball Association (NWBA) juniors’ team that was sponsored by MHS. He recalled that he was one of the most coordinated players on the team and that the coach designed a lot of the plays just for him. When Dan was sixteen years old, he read in Sports ’N Spokes magazine about a summer basketball camp at the University of Illinois (U of I) run by Brad Hedrick. Dan decided to attend and remembered fondly how he was the only one of his peers to be invited to play ball with the camp counselors. Over the next two years, Dan played on a couple of men’s teams in the Boston area with older men, many of them Vietnam War veterans. He played with Bob Hall, the first wheelchair athlete to push the Boston Marathon, and Tip Thiboutot, one of the best wheelchair-basketball players of all time. Back at school, Dan moved into the student independent-living dorm where he was able to cook his own meals and essentially live on his own and come and go from campus as he pleased. He also started taking on leadership responsibilities, graduating from student council representative in his first year in school, to council treasurer, vice president, and then president in his senior year. Initially, Dan intended to stay in the Boston area and enroll at the University of Massachusetts (U of M) upon his high-school graduation. But U of M did not have a wheelchair-basketball team, and he was encouraged by Thiboutot, among others, to select a college where he could play ball. Although he first thought about going to U of I to play for Hedrick, he also had met Mike Frogley at a tournament he attended in Whitewater. Mike persuaded Dan to attend UWW, and John Truesdale helped work out the financial arrangements. Thus, in 1995, Dan was off to the Midwest. Dan said that he has “always been a really competitive person.” Perhaps it was a way for him to channel his childhood anger. “I always wanted to finish first. Even if we were just doing floor exercises.” And although he was prone to injury—“That’s been the story,” he said, “injuries throughout my entire sports careers”—he was fearless. Thus, Dan had an elite mentality

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that was well suited for the UWW environment, and he eventually became a starter on the team. Unfortunately, Dan did not have the natural ability, or the capacity to avoid injury, that allowed him to seriously compete for a slot on the US team. As Dan said: I’ve never been the most athletic player. But I’ve always been mediocre on the good side of things to be able to hold my own. I’ve always believed that if you work hard at something you’re going to get your gains and you’re going to get better. . . . I credit sports with teaching me there isn’t anything in life I can’t do. After his playing days were over, Dan channeled his competitive drive and love of the game into coaching. He followed Mike to U of I and became the assistant coach on the men’s and women’s team while he pursued a master’s degree in leisure studies with an emphasis in sports management. Dan also went on to coach the NBA-sponsored Phoenix Banner Suns wheelchair-basketball team, has been an assistant coach on the US men’s team, and currently works in the area of adaptive sports programming. Although Dan had a difficult family life, he said that he has “been fortunate to have always had great friends.” He spoke especially fondly of his experience at UWW and the lifelong friendships he made with his peers on the basketball team. “It was like a family,” he said, and “it’s something I miss tremendously.” At the same time, Dan had some critical things to say about some people with disabilities who, he worries, project a negative image to the public. “There are already enough stereotypes out there,” he said. “I think you have a responsibility to present yourself positively to the rest of the world,” and for Dan that means exercising your agentive capacity in the face of constraints and showing others that you are capable of being independent. I try to be as normal and do things as normally as possible. I don’t like people modifying things for me. . . . I’m not saying I’m never too proud to ask for help. But I rarely do. People ask me what’s the best way to act toward someone with a disability or in a wheelchair. I say don’t do something for them that you wouldn’t do for anybody else. You know, people hold the door open for me sometimes. I hold doors for other people. It’s just the polite thing to do. . . . Yet there are some people who try to use their disability to their advantage. They might be getting a push, and they’re able to push themselves. . . . Do they really need a power chair? No. But they’re using one. In my opinion, that’s someone who’s deserving of a negative title for a person with a disability.

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Looking back on his life, Dan thinks he was so angry because he had listened to the people who told him that he would never amount to much. But, as he said, “Once I realized that there were other options, for me [or] for any person with a disability, regardless of what it is,” his life took a different direction. Implicitly privileging agency over structure, Dan opined, “There are only two roads you can take in life. You can take the negative road and view your life as being over—I know people who are like that. . . . Or you can take the positive road and live every day as normally as possible.”

Amy Bleile Amy Bleile was born in Dubuque, Iowa, in 1977, four months premature, barely viable at a little over two pounds. “Everyone thought I was going to die,” she recalled being told by her mother. “The hospital minister even gave me my last rites.” During her infancy, Amy had to wear baby-doll clothes. After a while, her mother realized that Amy was not reaching the developmental milestones expected of infants her age, and she suspected that something was wrong. The doctors tried to assure her that Amy’s delays were due to her premature birth. At the age of two, however, Amy was diagnosed with quadriplegic spastic cerebral palsy (CP). CP is a condition caused by damage to the brain before, during, or soon after birth. It is not a hereditary condition, but premature and low-birthweight babies are more likely to be affected. Like any disability, people with CP experience a variety of impairments (and impairments of varying severity) depending on the part of the brain that is affected. Often, people with CP suffer from spastic muscles, that is, muscles that are stiff and tight. In Amy’s case, her leg muscles are more affected than her arms, although the quadriplegic diagnosis indicates that all four of her limbs are implicated in the CP. Amy has needed several surgeries on her right hand to make it functional, as well as numerous other surgeries (more than forty) over the years. During the first few years of her life, Amy’s mother took her back and forth to a hospital preschool in Iowa City where Amy stayed six weeks at a time—without her parents, which the staff said would be distracting— to receive physical and occupational therapy. The hospital staff said that Amy would never be able to walk and that she would be dependent on a wheelchair all her life. Amy’s mother did not accept this prognosis. “That’s not the kind of attitude we want,” she told them. So she began researching other places to take Amy and found Shriners Hospital in Chicago. After three surgeries and more therapy, Amy was able to get around using braces and a walker, although she continued to use a wheelchair as well. Amy also experimented

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with crutches for a while, but because of her spasticity she fell a lot and soon abandoned this method of mobility. Amy’s father was an alcoholic and an emotionally abusive man who never accepted the reality of his daughter’s impairment. He simply thought that Amy was lazy and that all she needed was a healthy dose of tough love. Amy’s parents eventually divorced, and Amy, her younger brother and sister, and her mother often were in difficult financial straits. Amy remembered one particular tough period when they were semi-homeless and had to camp out in her grandparents’ yard for an extended period of time. They also lived in low-income housing, where her mother had to carry her up and down a short flight of stairs, and a trailer park, where her mother managed the complex, cleaned houses, and offered daycare for neighborhood kids. Amy recalled having a fairly easy time of it during elementary school, but she did have to be bussed to an accessible school, which was not the same school as her siblings attended. There also were many trips to Shriners in Chicago interspersed during the academic year that disrupted her education. During middle school, Amy was unhappy to be excluded from gym class and field trips, the latter because the bus was not accessible and school officials thought she was an insurance liability. There was one empathic teacher, however, who offered to carry her on and off the bus, allowing her to go on a trip every now and then. It was in high school that Amy had the most difficulty because of her disability. There was nothing wrong with Amy intellectually—she was an A/B student—but the high school required her to take a battery of intelligence tests not given to other students to prove that she was capable of attending regular classes. Still, Amy recalled that on the first day of school she walked into her English class (with braces using her walker) and the teacher told her, “Excuse me, you’re in the wrong room.” Amy rechecked her class schedule and said, “No, it says this is the right room.” The teacher replied, “No, the special-ed room is down the hall.” Amy was taken aback. “I’m sorry,” she retorted, “but I’m not in special ed. This is where I’m supposed to be.” By now the teacher was visibly upset, obviously not wanting Amy in his classroom. “I said the special-ed room is down the hall,” he repeated sternly. This was only one of many battles Amy and her mother had to fight at the high school. Amy used her walker half of the school day and her wheelchair the other half. While she was out of her chair, school policy required her to keep it in a janitor’s closet; the chair was a fire hazard, she was told. This created added hardship for Amy when she had to transfer in and out of her chair, which could take her several minutes, as the closet was very crowded. One time a ladder fell on her head and knocked her out for a few minutes. The closet also smelled of cleaning solvents, which made the air unhealthy for Amy to breathe.

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Amy also had to endure other harassments from school officials. At the beginning of every school year, she was required to have her doctor write the school nurse a letter verifying that CP was not a contagious disease. She also was only allowed to go to the bathroom at certain times of the day, and the teachers would time her to make sure she did not take too long. One time she was called into the principal’s office for violating this rule, and the principal actually threw pencils at her and called her a “fucking cripple.” An African-American friend who had helped Amy in the bathroom was called to the office too; the principal called her a “nigger.” During fire drills, Amy was required to stay in the building, as no one was willing to push her outside. When her friend finally did, one supervising teacher got upset and told her to get Amy back into the building. Additionally, Amy was mistreated by other students who were never reprimanded for their misconduct. Students continually knocked her over in the hallway, just for fun. One student even put rat poison in her lunch food, and another stomped on her foot and broke it. It seems almost unbelievable that things like this were still happening in the 1990s, but apparently that’s how regressive parts of the Dubuque community were in their attitudes toward people who were “different.” Eventually, Amy’s mother called in the Dubuque Human Rights Commission, which cited the school for over thirty violations. Outside of school, Amy and her African-American friends were also the victims of hate crimes led by two young men, William and Daniel McDermott, whom Amy and her friends called the McDermott gang. Amy and her friends were spat upon, shot at, nearly run down by a car, and had a cross burned on their lawn. One of Amy’s friends was beaten with a baseball bat and almost died. Amy’s mother called the local police who asked her, “Why are you letting your daughter hang out with black kids?” When the federal authorities finally got wind of what was happening, Amy became a witness in one of the first successful hate-crime prosecutions in the country.5 Throughout all these experiences, Amy has remained remarkably resilient and upbeat, another testimony to the agentive capacity of human beings. Her self-efficacious response to social constraint, however, was in no small part due to the steadfastness of her mother. Regarding Amy’s disability, her mother told her, “I’m not always going to be here to do things for you. It’s not a problem asking for help, but first you have to try to do it on your own.” As Amy said, “I never got away with feeling sorry for myself, at least not for more than five minutes. My mom would kick me in the butt if I ever got that down in the dumps.” As Amy prepared to graduate high school, her guidance counselor told her that she “needed to learn her limitations,” that college was not an option because she had a disability—another instance of lowered expectations that,

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Figure 5.4 Amy Bleile and Dan Ferreira at a UWW wheelchair-basketball game (2007). Photo by Ron Berger.

as we have seen, is part of the disability experience. Nevertheless, Amy decided to disregard this advice and enroll in nearby Clark College, doing very well in her first year. During that time she met a girl from Wisconsin in one of her classes who told her about a completely accessible school in Whitewater. Amy decided to apply to UWW and was admitted for the fall 1997 semester. She was thrilled to be in an environment where there were a lot of other students with disabilities. Prior to enrolling at UWW, Amy had never played organized wheelchair basketball. She had occasionally shot baskets and scrimmaged with the other patients while she was undergoing rehab at Shriners Hospital, but that was it. During her first year at UWW, she was invited to play with the fledgling women’s team coached by Melvin Juette and Eric Barber. At the time, Amy was the only woman with a disability who wanted to play, so the team was filled with able-bodied women. This made them ineligible for NWBA-sponsored events, but they were allowed to compete in Canadian tournaments, where able-bodied people are eligible to play. After a while, Amy got to know and befriended the players on the men’s basketball team, and she was invited to join them for a tournament in Carbondale, Illinois. The team’s Class I player was not able make the trip,

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and they needed a Class I to put on the court. During the games, Amy, who was not yet very adept at moving her chair, generally parked herself in the middle of the court and tried to get in the way when the opposing team attempted a fast break. Otherwise, she just tried to stay out of the way and limit herself to calling out the location of the ball to her teammates. Amy told me about being roughhoused by players on the opposing team, who knocked her over every chance they got. They also trash-talked Amy, who did not know how to react. “You’re too nice,” her teammates said. “You need to work on your trash-talking.” The most Amy could muster was an “I hope you miss” remark to the opposing players. But she did show fortitude by staying in the game, even after incurring a head injury that later required ten stitches. Amy played with the men’s team for the next two seasons, enjoying the sociability of this new milieu but also gaining a reputation as something of a goody-two-shoes. She was taken aback when she heard other players with disabilities calling each other “gimps,” “cripples” and the like, politically incorrect language that she thinks undermines the cause of people with disabilities. “You shouldn’t be talking like that,” she told them. “We’re supposed to be setting a good example, . . . educating people all the time.” Amy said that she likes “to think of the big picture. . . . That’s my thing. . . . But sometimes it can be a little wearing on people. . . . The boys joke that I’m the mama of the group. . . . ‘Amy’s gonna make sure we’re nice and always do the right thing.’” Amy also told me that she thought that some of the athletes needed educating about people like her who use power wheelchairs. Before college, Amy had always used a manual chair. She only started using a power chair after she arrived at UWW. As she said: The campus is so large. Me pushing a chair around here isn’t too feasible. . . . There’s been some [athletes] who’ve told me, “If it wasn’t for you, I would’ve had real misconceptions about people in power chairs”—thinking that we’re lazy and just in power chairs because it’s easy, when in reality it’s the key to our independence. . . . Then again, I’ve heard people from the other side who say, “I thought that all the athletes were real jerks.” . . . They didn’t [even] want to have anything to do with me because they felt like I was trying to pretend that I wasn’t disabled, that I was better than them because I played sports. . . . But after meeting some of [the athletes] they said, “Now I can see that they’re really nice guys. They work really hard.” Thus Amy views things from what she called “the middle ground,” believing that “both sides hold stereotypes and false ideas about each other. And if

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there’s not someone . . . brave enough to come up and start a conversation, then it can become a real big issue.” Amy, who graduated from UWW with a degree in social work and then transferred to U of I to earn a master’s degree, also played on the U of I women’s team under Mike Frogley. I asked her if she had observed any differences between playing with the men on the UWW team and the women on the U of I team. I liked playing on the guys’ team so much better. The girls are so petty and competitive with each other, on the court and off. . . . I think it’s because a lot of them feel that they have to fight so much more than the guys to get respect. . . . A girl would be like, “Frog, so and so won’t let me in the drill.” That would never come out of a guys’ mouth. I would just sit there, “That’s not a big deal. Who really cares?” . . . So I have much more of a guys’ mentality when it comes to that kind of thing. . . . But I liked the fact that there were girls on the girls’ team [who played] at my level. . . . so I could keep up a little better. But as for hanging out with the team, it was much better hanging out with the guys. . . . And the [other] girls would not choose to hang out with each other either. At the same time, Amy also expressed some disgruntlement with those athletes who refuse to date women who use wheelchairs, as if they felt they were “too good” for these women. [T]he people who . . . say I’m not going to date you, . . . that’s ridiculous. . . . I have a friend who used to play here . . . [who thought] he’d never date a girl in a wheelchair. . . . After we became friends he told me, “You really changed my view.” . . . Well, he got married last year . . . [to] a girl in a chair. “Thank you, Amy, for being right,” he said. With these remarks, Amy revealed an additional divide within the disability community based on gender, as some disabled men try to disavow their stigmatized status by dissociating themselves from women with disabilities, perhaps enabling them to maintain a sense of masculine power and privilege that is often denied to men with disabilities. In doing so, unfortunately, they reinforce hierarchical relationships within their own community. I will explore the issue of gender and disability in more detail later in the book.

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CHAPTER

6

The Third Generation

This chapter tells the stories of three “third generation” athletes—two elite and one non-elite—whose lives have been touched by the University of Wisconsin-Whitewater (UWW) wheelchair-basketball program. The themes of familial support, the influence of mentors and role models, and the self-empowering benefits of institutional opportunities to play competitive sports are reiterated here, along with the disgruntlement that is characteristic of divisions within the disability community. All three of the individuals in this chapter were among the first cohort of athletes who came up through the pre-college youth programs developed by Mike Frogley at UWW (see Chapter 3). As noted earlier, these institutional structures provided recreational opportunities to youths with varying abilities and interests while also nurturing and mentoring youths who were interested in playing wheelchair basketball more competitively, enabling them to rise to the elite level of the sport more rapidly. Jeremy (Opie) Lade, who lost the use of his legs as a result of an automobile accident he experienced when he was eight years old, is an elite player who possesses the work ethic and competitive drive to win that is second to none. Christina Ripp was born with spina bifida and is also an elite basketball player as well as a world-class wheelchair racer who matches Opie’s dedication to achieving excellence in sports. Jon Fraser was born with spina bifida, too. He is a non-elite player who has always been able to hold his own with his peers on the court, but, by his own admission, he never had the interest to work as hard as Opie or Christina to make it to the next level. Thus, Jon

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gives us the perspective of someone who is in some sense both an insider and an outsider to the world of elite wheelchair athletics.

Jeremy Lade Jeremy (Opie) Lade was born in Oconto, a small town in northern Wisconsin, in 1981. His parents worked in various factory jobs until his mother got a job with a title insurance company. She learned the business and eventually bought the company and brought Opie’s father into the business as well. Prior to his accident, Opie enjoyed skateboarding and bicycle riding and, of course, team sports, which he played often with his older brother. Baseball was his passion, his “big thing,” as he said, and he was good at it too. He loved competing and was proud to be an all-star in Little League. Ironically, he “never even touched a basketball” at that point in his life. The automobile accident that cost Opie his ability to walk happened during the summer of 1989. It was a foggy morning with low visibility as the Lade family embarked on a summer vacation trip. On a bypass, a truck veered in front of the Lades’ car and hit it. Jeremy was wearing a seatbelt, but it was resting too high on his torso; later, the Lades learned that this was due to a design defect. Opie jolted forward as the vehicles collided, bending at his navel rather than his waist and shattering one of the vertebrae in his back. A piece of the vertebrae cut through his spinal cord, and he was instantly paralyzed, leaving him without function below the T12 level. “I couldn’t feel my legs,” Opie told me. “I knew it right away.” Opie’s brother, who was a couple of inches taller and thus avoided the same fate, actually broke his back. But after months of wearing a back brace and undergoing rehabilitation, he made a full recovery. Opie’s mother broke her wrist, which required casting, and her face was cut pretty badly; and his father incurred only a minor cut on his forehead. As he looks back on that day, Opie said, “it was kind of funny because all the ambulance people were worried about my eye,” which was cut and bleeding and required two stitches. “We got to take care of his eye! We got to take care of his eye!” they kept shouting. After Opie was taken to the hospital, the doctors performed exploratory surgery to make sure there was no internal bleeding, which there was not. But other than that, Opie told me, “The next ten to twelve days were a blur. I didn’t really know what was going on. . . . People were coming and going. It took a while for everything to sink in.” He said that his mother was “pretty tore up about it. My dad too. . . . But they were pretty strong in front of me, which made me strong too.” Eventually, Opie came to view his condition as “an obstacle that I just had to overcome.” When things got hard, he would think, “I got to beat this.”

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Opie was in the hospital for about three months, undergoing a therapeutic regime similar to the one experienced by Melvin Juette and Mike Frogley that I described in Chapter 4. The part he seemed to remember most about that experience was learning how to use his wheelchair—“some old folding chair, not very sporty,” he said. He also told me about the alterations on his home that were required to make it wheelchair accessible. At considerable expense for a family of modest means, the Lades installed a wheelchair ramp and widened the front door to make room for his chair. At that time, Opie did not recall ever seeing anyone in Oconto use a wheelchair, and it was a “struggle every day” to learn how to use one to get around. His father taught him to “jump” up and down curbs, because there were no curb cuts in Oconto, which was “a painful process [with] many a bump on the back of my head,” he said. His mother tried to coddle him a bit, but his father would have none of that, realizing that Opie needed to learn how to do things for himself. Since the elementary school which Opie had been attending was inaccessible to wheelchairs, he had to switch schools and make new friends, which is a difficult process for any youth of that age. But Opie thinks the experience made him more outgoing than he otherwise would have been if he “had just hung out with the same group of friends [he had known] since Kindergarten.” By middle school, Opie seems to have settled into his situation, and participation in sports was, of course, a key ingredient of his adjustment. As others have testified in this book, Opie’s friends offered to accommodate their games so that he could play with them. When they played baseball (hardball), Opie’s first love, he batted from his wheelchair. Sometimes he pushed himself around the bases himself; sometimes he used a designated runner. And he played positions that required less mobility: pitcher and first base. At school, the gym teachers made adaptations for him, too. Opie was a competitor and wanted to prove to everyone that he was still an “athlete.” Encouraged by his brother, who challenged him to get stronger and better, he kept “working and working” to be the best he could be. When Opie was about twelve years old, he attended a summer camp for youths with disabilities at Camp Wabeek, an Easter Seals program in the Wisconsin Dells. At Camp Wabeek he participated in a variety of activities, including arts and crafts, fishing, canoeing, swimming, and archery. There also was a basketball court where a few of the kids liked to shoot around. Many kids at the camp had more severe impairments than Jeremy, and a lot of them used power wheelchairs. Opie found that he was more athletic— and more motivated to be athletic—than most. He needed a greater challenge. It was around that time that Jackie Wenkman, an assistant director of Disabled Student Services at UWW, got a call from a friend who lived in

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Octonto telling her about a youngster who had been in a car accident and needed something constructive to do. “Is there anything you can do for him?” she asked. Wenkman told Ron Lykins about the phone call, and Lykins discussed the situation with Mike Frogley, who was his graduate assistant at the time. “There must be other kids out there like this,” they said to each other, and they came up with the idea of starting a summer sports camp.1 The following summer, when the first UWW summer camp was held, Opie was one of twenty youths to attend. The kids went swimming, pushed track, played tennis and football, and even learned a little karate. Basketball was the sport that captured Jeremy’s imagination, however. He watched the older players like Melvin Juette and Eric Barber scrimmage and was in awe of what he saw. They told him about the National Wheelchair Basketball Association (NWBA) and the Paralympics and Gold Cup, and Opie was hooked. After the initial success of the sports camp, Mike went on to develop a summer basketball program for kids as well as a monthly weekend outreach program for those who wanted to play more competitively. As Opie participated in these activities, Melvin was the one who took him under his wing. Melvin told me that he could see right away that Opie “had a natural talent for the game. He was fast, a good shooter, . . . a leader on the court . . . [and] an eager learner.” If Melvin told Opie “to do something, gave him feedback about his play, he’d do it without question.” By the time Opie was ready for college in 1999, he had already made the US national juniors’ team. Mike, who had by now moved to the University of Illinois (U of I), tried to persuade his young protégé to follow him there, but Opie had his mind set on Whitewater, especially because it was a lot closer to Oconto. Besides, as he told me: I have so much tradition here. And to come back to a program and be able to give what I was given. To help out some kids—I see kids at the camps, and I think that could be me. . . . It’s been a lot of fun to be able to do for other kids what guys like Melvin and Eric have done for me. Opie entered college a year after Tracy Chenowyth took over as coach of the UWW team, and it was Opie’s emergence as an elite athlete that helped Tracy make his mark as a championship-winning coach. Everyone who knows Opie describes him as one of the hardest working athletes who has ever passed through the UWW program. He lifted weights nearly every day, and during the summer he rode his hand-operated bicycle 20 miles a day (in the winter he a rode a stationary hand cycle). “Some of the other players think I’m obsessed,” he told me, but “I have a quote on my gym

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locker that reads: ‘Obsessed is what lazy people call a hard worker.’” Opie admitted that it is unlikely he would have attended college “if it wasn’t for basketball.” At the same time, his competitive nature spills over into his academic endeavors. “I definitely took care of business as far as academics are concerned,” he said. “I wanted to have the best GPA [grade point average] on the team.” Opie also admitted that at times he has gotten frustrated with some of his UWW teammates who do not share his commitment to winning. After losing a game, for example, he just wants to get back into the gym to “work harder so we don’t lose the next time.” For other players, however, “It’s

Figure 6.1 Jeremy (Opie) Lade scrimmaging with teammates at UWW (2004). Courtesy of Gregg Theune, UWW.

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just a loss. It’s no big deal.” Nowadays, Opie is more accepting of the fact that people differ in their interests and priorities and that he cannot hold everyone up to his standards about basketball. Still, like others in this study, Opie implicitly privileged agency over structure as he expressed frustration with those people with disabilities who he thinks feign more dependence than they need and who spoil the positive image that he tries to project. As he said: I think as far as being athletes, we have a huge responsibility on our shoulders to be seen as independent, to be out there doing things the best that we can do, to be opening doors for ourselves, and little things like that, so people aren’t saying, “Oh, he can’t do anything if we don’t help him.” . . . If you see people [with disabilities] who have the ability . . . and they just let other people help them all the time, I think that hurts the image of having a disability. . . . I know there are a lot of people . . . who need help. But then again I think there are people . . . who aren’t pushing themselves to the limit of their independence. . . . Even on our basketball team, we got certain guys who—maybe they don’t comb their hair every day, they wear dirty clothes. . . . That’s definitely frustrating from my point of view. Opie made his first US men’s wheelchair basketball team in 2002, winning a gold medal at the Gold Cup tournament held in Kitakyushu City, Japan, and fulfilling his dream of becoming one of the best players in the world. After graduating with a degree in physical education, Opie continues to live in Whitewater and to practice regularly with other alumni and current UWW players in Roseman gym. He likes to trash-talk the older players like Melvin: “Geriatrics, I’ve been watching you for years. I know all your moves.” Melvin retorts, “You youngsters gettin’ tired yet? . . . This old man is running circles around you.” This type of exchange is all in good-natured fun, of course. The mutual level of respect and affection that Opie and Melvin have for each other, as is also true of other players in the program, is one of the most admirable elements of the Whitewater story.

Christina Ripp Christina Ripp was born in Madison, Wisconsin, in 1980 with spina bifida. Spina bifida, which means cleft spine, is an incomplete closure of the spinal column that occurs during the first month of pregnancy. It is one of the most common congenital conditions that cause disability, but medical researchers are still uncertain about its cause. As we have noted with other disabilities, spina bifida and its effects on individuals vary in severity.2 In

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Christina’s case, the doctors operated on her right away, fourteen hours after her birth, to close up the open sac on her spine. Over her lifetime she has had numerous surgeries to mitigate the disabling impact of the condition, including procedures on her hips, legs, and feet. She is a bilateral paraplegic and has no feeling in her legs. At the time of her birth, Christina’s parents ran a family farm, but they separated when she was just two months old. Thus, Christina was raised by her mother in a single-parent household until she was eight years old, when her mother remarried. She thinks of her stepfather as her dad and has very little contact with her biological father. Christina got her first wheelchair when she was two and a half to three years old. But when she was little, she told me, “Most of the time I just crawled, . . . even in school until the end of the first grade. When we went outside for recess, I got pulled out in a wagon.” Christina said that her mother always pushed her to be independent and even made her pull herself up on the kitchen countertop, using her ribcage as leverage on the countertop edge, to get something out of the cupboard. Christina also used braces and a walker to aid her mobility. By the time she was twelve years old, she started using a wheelchair on a regular basis. In elementary school, Christina’s classmates were pretty accepting of her condition. “All the kids wanted to race me down the hall,” she recalled. “I was the ‘seal walk’ champion.” Around the sixth grade, however, things got more difficult when the other kids started cliquing up. That is when she started to realize, “Oh, I’m different because I use a wheelchair.” Still, “it really didn’t matter to [her] all that much” because she found new friends, and wheelchair basketball. Christina’s physical therapist had told her that playing basketball would be good for her upper-body strength. Often, she arrived forty-five minutes early to school so that she could shoot the ball around from her wheelchair under the supervision of a teacher’s aid. During gym class, her teacher wanted to lower the basket to make it easier for her to reach it. But Christina always wanted to shoot at the regulation 10-foot basket, “the big one,” as she called it back then. “I just wanted to make that basket,” she recalled. “I don’t know what was driving me. I just liked it. I think it was the challenge.” Christina attended Camp Wabeek, the same one that Opie attended, from about the age of eight until she was about twelve years old. Among all the activities that were offered at the camp, she liked swimming and basketball the most, and her counselors encouraged her to keep at it. Opie was one of her best friends at the camp, and they often enjoyed shooting around together. But like Opie, Christina became bored with the camp, and she realized that she was “one of only a few kids who could even dress themselves.” She told her mother, “This isn’t where I should be.”

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Christina remembered the time when some players from a Madison men’s wheelchair-basketball team put on a demonstration at the camp, which impressed her to no end. Soon thereafter, she received a letter inviting her to join a newly formed juniors’ team in Madison. Christina assumes that someone from the camp must have given the organizers her address. Being a rather shy person, she did not want to go at first and told her mother that she was content with just shooting baskets. Her mother said, “Just go and try it. See what it’s all about. If you don’t like it, you don’t have to go anymore.” Christina’s stepfather drove her to the first practice. She was nervous, and when she arrived at the gym she found that all of the players there were older boys! It was not long before she realized, however, that she was faster than a lot of them. She thought, “I’m better than the boys at something,” and this motivated her to keep going. As Christina got more involved in basketball, she learned about the first UWW summer camp, where once again she was the only girl in attendance. Still, she simply loved it. “We had a blast,” she said. “[At night] we’d watch a movie and then go to the gym and play basketball at midnight. We were so tired we could hardly keep our eyes open. But we wanted to play basketball.” Christina’s camp experience also brought her under Mike Frogley’s tutelage, and she became a regular participant (as a player and counselor) in the programs that he coordinated for pre-college youths. Christina credited Mike with “trying to promote healthy lifestyles for us, to get us involved in being active.” She also credited him for jumpstarting her career in wheelchair racing when Mike “would drive his car ahead of us, . . . speed up and make us sprint after him.” When Christina was fourteen years old, she started playing on the National Basketball Association (NBA)-sponsored Minnesota Timberwolves women’s team, making the four- to five-hour trip to Minneapolis to participate. At her age, she was six years younger than anyone else on the team, and she started feeling the pressure of the higher level of competition. Her mother, however, kept at her to continue, and by the time she was a senior in high school, she made up her mind to go to Whitewater to play. Since UWW didn’t have a women’s team, Mike told her she could play with the men. But when he took the coaching position at U of I, he persuaded her to come with him and play for the U of I women’s team. Christina enrolled in the fall of 1998, where she majored in physical education. She made her first US women’s wheelchair-basketball team in 2000 and her first US track-and-field team in 2002. As one of the two women in my sample, Christina had some interesting observations to make about gender differences in wheelchair sports. “There’s a lot of women who play tennis and push track,” she said. “But basketball doesn’t seem to interest them as much.” She is not really sure

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why this is the case, but she does think that playing with the boys helped her become a better athlete. “I think some parents with girls who are playing wheelchair basketball don’t push them as hard as the boys get pushed,” she observed. Thus, like Amy Bleile, who said that she “liked playing on the guys’ teams so much better,”3 Christina said that she “really enjoyed playing with the boys. . . . It made me want to work harder.” Christina also told me that a lot of disabled women she knows “have poor self body images because they don’t look like a supermodel—and you’re not going to when you’re sitting in a chair.” She thinks that women who have acquired their disability later in life probably struggle with this more than women who have grown up with one.

Figure 6.2 Christina Ripp at the 2006 Gold Cup in Amsterdam. Courtesy of the Organizing Committee of the Gold Cup 2006.

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Figure 6.3 Christina at the 2004 Roosevelt World Basketball Challenge in Warm Springs, Georgia. Copyright © 2004 Paralyzed Veterans of America, by permission of Sports ’N Spokes.

I’m sure that if I had walked at one time, I would compare myself to what I used to do. . . . [But] I’m really comfortable with my disability because I don’t know anything else. . . . I’ve gotten past the struggles of being different. . . . This is who I am. . . . I just compare myself to me. Still, like Amy, Christina is disgruntled about male athletes who are unwilling to date women in wheelchairs. I’ve gotten into some heated conversations with people about that. . . . “How can you say you’re not going to date anyone in a

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wheelchair? . . . Even though you like me you won’t date me because I’m sitting.” . . . They have such high standards for their women. . . . They want them perfect. They have to be this pretty. They have to have this good of a body.

Jon Fraser Jon Fraser was born in Chicago in 1980 and grew up in various Chicago suburbs and later in Kenosha, Wisconsin. His parents were never married and split up when Jon was two to three years old; he has not seen his father since. His mother married his stepfather when he was eight or nine, and Jon was very pleased because he “had always wanted a dad.” Jon has an older sister and younger sister but described his family as “dysfunctional,” though perhaps “just as much as anybody else’s,” in part because none of the siblings have the same biological father and his mother and older sister “never really saw eye to eye.” Like Christina, Jon was born with spina bifida and had several surgeries when he was young to mitigate the condition, including the installation of a tubular shunt that runs from his spine to his head that regulates the flow of fluid to his brain. He can feel his lower extremities only in some places, “a little bit below my knee,” he said, and “a spot on the lower part of my legs. I can feel my ankles . . . but I can’t feel my feet at all.” When Jon was younger, he walked with braces. He remembered “staying with my grandma a lot. . . . She never had a car her whole life . . . so we walked everywhere, . . . usually pretty far distances because she didn’t like to take the bus.” As he got older, however, the curvature in his spine got worse, and he started experiencing a lot of pain, having to take frequent rests when he walked. He told me about walking with one of his friends and “holding on to his shoulder . . . because I couldn’t go very far without having to stop.” Jon recalled that in the fifth or sixth grade the doctors recommended another surgery to help with his walking. He had to miss a lot of school but “had a really nice teacher who came . . . to the house and tutored [him] so he could graduate to the next grade level and not have to stay back a year.” The rehabilitation from that surgery was grueling, however, and he eventually realized that he could more easily keep up with his friends and “get from place to place ten times quicker” if he just used a wheelchair. He found it easier to toss a ball around from a chair too, which is something he liked to do with his friends. Jon had some good friends from his neighborhood who “didn’t care about [his] disability,” but the kids at school were a different matter. “They were pretty rough, . . . made fun of me a lot,” he said. He also learned that young kids will “say whatever is on their minds,” and if they “see someone

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who is different, they will ask, ‘What’s wrong with you?’ . . . without thinking about the consequences of what they’re saying.” At the same time, some of Jon’s classmates started to resent him because they thought the teachers gave him special treatment because of his disability. One time, a student tripped Jon when he was walking down the aisle. When the school principal asked the boy why he did it, he replied, “I don’t like him. He always gets favored by the teachers.” In gym class, the teachers made Jon do most of the activities required of the other students. He was made to swim, even though he did not like it, and he had to push his wheelchair for a mile at a time. He even tried square dancing, but that was pretty hard to do in a chair. By the time Jon enrolled in high school, he had played some basketball with his friends but never in an organized fashion, which began after his parents took him to a social gathering of families who had children with disabilities. It was there that Jon met a man, Ricky Chones, who ran a wheelchair-basketball program for kids a couple of nights a week. When Jon started playing with this group, he found that he was one of the fastest boys on the court and that he could easily—perhaps too easily—get by his opponents and score and rebound at will. Thus, he started to get bored because playing against the other boys was no challenge. That’s when Chones asked Jon if he would like to play on a more competitive team. Subsequently, Jon started playing with NWBA-sponsored teams and found himself becoming a pretty good athlete. Through this network, he met Opie and Christina, and after he attended the UWW youth programs, he got to know Mike Frogley, too. Mike talked to Jon about coming to Whitewater to play college ball, but by the time Jon graduated from high school in 1999, Mike had already left for U of I. Jon, like Opie, decided to stick with UWW in order to stay closer to his friends and family in Kenosha. Jon was actually the first player I interviewed who told me about the initiation rituals that were imposed on rookies at UWW, like shaving heads completely bald or leaving scalps with a Mohawk or other design—a basketball, checkerboard, or smiley face, for instance. Rookies also have to pick up all the loose balls in the gym after a practice and load the wheelchairs on and off the bus when the team travels; and they have to fetch items for the players if they request them. If a rookie is unwilling to comply with these rituals, Jon said, he might find himself on his back, wheelchair tipped over, with his “wheels thrown halfway across the gym.” I asked Jon if these antics discouraged students from joining the team, and he told me he had only heard of one player who had ever quit because of these practices. Otherwise, “everyone who comes here pretty much knows what they’re getting themselves into.” As a non-elite player, Jon had some interesting observations to make about the difference between elite athletes like Opie and athletes like

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Figure 6.4 UWW wheelchair-basketball team (2002). (Bottom left to right) Opie and Jon Fraser. (Top right) Tracy Chenowyth. Copyright © 2002 Paralyzed Veterans of America, by permission of Sports ’N Spokes.

himself, and between those who play wheelchair basketball and those who do not. If I had the work ethic Opie does, I might be at the level he’s at. . . . He just has this burning desire to work and get better. I don’t have that. . . . I like basketball and it’s really fun. I’ll work hard at it, but I won’t spend eight hours a day in the gym shooting and lifting . . . I’d rather . . . have time to hang out with my friends. At the time of the interview, Jon was still a student, a general business major, and he admitted to being unhappy that his playing time had been reduced as new up-and-coming players had been added to the team. This ate away at his confidence and caused him to feel a little badly about himself, indicating a downside of the UWW program’s over-conformity to the performance ethic of competitive sports. “I don’t know if I can handle sitting on the bench anymore,” Jon told me. “I start thinking that the coach doesn’t like me, that he doesn’t think I’m a good player.” Jon, a young man who has several close friends and who is well liked by everyone who knows him, also admitted that confidence is something he has struggled with all his life. I let my disability bring me down a lot. . . . It’s hard for me . . . to forget . . . things people have said to me over the years—all the

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people . . . who said that I couldn’t do this or I couldn’t do that. . . . So right now I actually think basketball is hurting me more than it’s helping me. In some ways, among the people I interviewed, Jon seemed the most selfdeprecating and ground down by his childhood experiences, perhaps in part due to the nature of his familial background. As for the divide between people who play wheelchair basketball and people who do not, Jon said: When you’re on a team you have that close-knit feeling. That’s who you hang out with . . . [and] a lot of times the topic of conversation is basketball—what game we played, how we played, what game’s coming up. If I’m talking to someone who’s not on the team, I can’t talk to them about that. . . . It’s like that in society in general. There are people who play sports or who like sports and people who don’t play or who don’t like it. . . . [People with disabilities] are no different. They’re like everyone else. On balance, however, Jon thinks that wheelchair basketball is good for people with disabilities. “To have the awareness that you can play sports— that you don’t have to climb into a little shell and hate the rest of the world because you’re in a wheelchair—it can definitely help there.” He remembered how a girlfriend of his had told him, before she knew anything about people in wheelchairs, “Wow, you can do this? . . . You can play sports? . . . I can’t believe you can do all this stuff.”

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CHAPTER

7

The Fourth Generation

In the final stage of my research, I was able to interview three elite athletes who were not yet members of the University of Wisconsin-Whitewater (UWW) community when the project first began. Jeremy Campbell, Matt Scott, and Joe Chambers represent a “fourth generation” of athletes who were recruited by Tracy Chenowyth after Mike Frogley left for the University of Illinois (U of I). By now a new era—the Chenowyth era— was fully underway. Jeremy (Opie) Lade, once a mentoree, was now a mentor, although Melvin Juette and Eric Barber, who still live in Whitewater, continued in that capacity as well. UWW had firmly established its national reputation as the place for up-and-coming players to go, even if it meant bypassing the opportunity to receive a full-ride tuition scholarship at a Division I university.1 Jeremy Campbell and Matt Scott, like Christina Ripp and Jon Fraser, were born with spina bifida. Joe Chambers, on the other hand, did not acquire his disability until he was in his late teens, when he developed cancer of the knee and eventually had to have his leg amputated. Together, these young men have formed a formidable trio on the basketball court. They are all deeply appreciative of the other players and coaches who paved the way for them. They have a sense of history, knowing from whence they came. All three were still students at the time of the interviews, but they had already made their mark, cementing their own legacy within this rather remarkable collegiate sports program.

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Jeremy Campbell Jeremy Campbell was born in Pinson, Alabama, a small town about 25 miles north of Birmingham, in 1984. The Pinson hospital staff, who had never before dealt with a case of spina bifida, told Jeremy’s parents that he might not survive. Even if he did make it, the staff said, he would likely suffer complete paralysis and possible mental retardation. This prognosis, based as it was on the hospital’s inexperience with this condition, was overly pessimistic. Jeremy did require immediate surgery to close up his spine, and he underwent about a dozen other bone and muscle procedures— among them, pins inserted in his knees—by the time he was seven. When he was four to five years old, he had to wear a full body cast for about seven months. But after all this, he has retained limited sensation in his legs and is clearly a very intelligent young man. As a young child, Jeremy walked without assistive devices. But as he grew older, and heavier, his body could not carry his own weight. By the time he was five, he started wearing one brace, and by the next year he was wearing two. By the time he was seven he was using crutches, and if he had to walk long distances he used a walker. Soon thereafter he was diagnosed with scoliosis, too. The doctors worried that the curvature in Jeremy’s spine might puncture his lung, and they recommended that he use a wheelchair to alleviate the pressure and avoid further complications. Jeremy has been using a wheelchair ever since. Jeremy’s father is a welder and a recovering alcoholic, and his mother is a nurse who has suffered bouts of depression. Jeremy attributes much of the stress on his family not to his own condition but to his older brother, who is a diagnosed schizophrenic and bipolar manic depressive. The disease did not manifest itself until Jeremy’s brother was eighteen and Jeremy was eleven, and thus there are “two very distinct stories” about his family, Jeremy said. There’s the one before my brother’s condition and the one after. . . . My parents have been through a lot, which has caused them to have some pitfalls. But for the most part they’ve done pretty well. . . . I always knew they loved me and would do anything for me. . . . It was tough growing up with a disability, to not be able to do everything the other kids were doing. . . . There were times when I got frustrated. . . . But my parents never let me cry in my milk too long. They always pushed me to be independent, told me “You know, lots of people can’t do things. It’s what you can do that matters.” Jeremy described his school and peer experiences positively. The schools he attended were architecturally accessible, and he was treated well by his

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peers. “I don’t have any Forrest Gump stories,” he said, “where kids threw rocks at me or called me names. . . . My friends treated me like anybody else. They didn’t see my wheelchair as anything other than being the way I got around.” Thus, his friends included him in the sports they played, and they never made him feel like he was “this poor guy in a chair.” As a youth, Jeremy swam and played wheelchair sports through the Lakeshore Foundation in Birmingham, beginning with track and field and later basketball. There were times when his mother drove him up to Birmingham five days a week. Until his teens, Jeremy played recreationally, not competitively. When he was fourteen he started focusing on basketball full-time, hoping to receive a scholarship to play college ball. During high school, he played in the National Wheelchair Basketball Association (NWBA) juniors’ division and eventually with a couple of NWBA men’s teams, and he attended the camps that Mike Frogley ran at the U of I. In 1999, Jeremy made his first US national juniors’ team, playing alongside Jeremy (Opie) Lade. Two years later, he made the US juniors’ team coached by Tracy Chenowyth, also the coach at UWW at that time. During the international tournament held in Brazil, Jeremy got to know Tracy quite well. He was impressed with Tracy’s talents as a coach who knew how to get the best out of his players and also as a person who is a genuinely caring human being. Jeremy was widely recruited by collegiate coaches at several universities, and he actually turned down scholarships in order to come to UWW to play under Tracy in 2002. It was especially tough to turn down the opportunity to play at U of I, as Jeremy has great admiration for Mike. And the University of Texas at Arlington (UTA)—“I’m a huge Dallas Cowboys fan,” he said. UTA offered me a full-ride scholarship. So to be in Arlington. . . . I could be a season ticket holder [for the Cowboys], get my education paid for, live in a climate that’s like Alabama, not the freezing cold [like Wisconsin]. . . . I turned all that down because I wanted to be here with Tracy. Today, Jeremy describes Tracy as “the most beautiful person I’ve ever met. He’s my basketball coach, but he’s probably my best friend too.” To be able to play with Opie, his teammate on the national juniors’ team, was also a key factor in Jeremy’s decision to come to UWW. Although Opie was only three years older, Jeremy looked up to him as a mentor, as someone who could help him become a better player, and a better person. Opie was the team leader when I got here, both on and off the court. . . . He cares deeply about everybody in this program. . . .

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Figure 7.1 Jeremy Campbell with the UWW team (2006). Courtesy of Gregg Theune, UWW.

He makes sure they’re in a place—financially, academically, whatever they need—to achieve success. . . . Opie has instilled a lot of these traits in me, to make me want to help people too. And after Opie graduated, Jeremy became the leader of the team. Like his predecessors, Jeremy has had a great deal of success at UWW, winning national collegiate championships and making his first US national men’s team in 2006. He is majoring in human performance and would like to work as an athletic trainer in a YMCA or similar venue.2 I think what impressed me the most about Jeremy’s story was the depth of his

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commitment to his teammates and his genuine interest in helping other people. I’ve got twelve guys on this team who look to me for help with whatever they need. . . . I cater to these guys. I want them to know that I love them, that I will do anything for them. I challenge my guys all the time to become better athletes, better students, better people. . . . I’m always watching [my teammates], analyzing their attitudes and behaviors and trying to get them to move past the negative things that are holding them back and turning those things into something more positive. Jeremy described the bond he felt for his teammates as a “brotherhood.” During the year in which the Rolling Warhawks won their third national title in a row, one of his teammates had attempted suicide. “We had been through a lot that year,” he recalled. “Our slogan that season was ‘all is one.’” Some of them went out and got Warhawks tattoos together to show their commitment to each other. Jeremy is an avid reader and well versed in psychology and philosophy. One of his favorite books is Viktor Frankl’s Man’s Search for Meaning (1959),

Figure 7.2 Jeremy and teammates Justin South and Zac Nieman display their UWW tattoos (2004). Courtesy of Gregg Theune, UWW.

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which he has read four or five times. From Frankl, Jeremy derived a philosophy of life that includes struggle as a central element, which is, of course, an implicit acknowledgement of the agentive capacity of human beings to overcome structural constraints. People tend to look at struggle and run from it. . . . I look at struggle and think, that’s how I can grow, learn from it, become a better person. . . . As disabled people, I feel that it’s our job to educate others about what we go through and what we can show you about your own life. . . . If someone can look at me and say, “If this guy can do it, so can I,” they might be a better person for having known me. . . . I can let you see that as a disabled person . . . I can show you how to be happy, appreciate your life as it is. Just imagine if we all . . . just said, forget about what we want to be. We are what we are right now. I also found Jeremy to be remarkably tolerant of people who say inappropriate or offensive things about people with disabilities. To be honest, it’s tough being a disabled person. There are tons of things that come up every day that could easily grab hold of you and break you. It takes a very disciplined, positive person to accept the position that we’re in and push through it. . . . But for me, it’s all I’ve ever known. Yes, there are lots of things that could potentially eat away at my self-worth. People look at me funny, stare at me, say something dumb . . . or talk to me like I’m mentally challenged. . . . It’s easy to think, “Man, everybody thinks I’m worthless.” . . . But you have to realize that they’re just doing the best they can. . . . For the most part I haven’t found people doing or saying things out of malice. . . . They just don’t know any better. Growing up in Alabama, however, Jeremy did have experiences that stretched even his capacity for tolerance. Evangelical Christians, for example, of which there are many in the South, would “lay hands” on him without his permission and tell him that if he believed in Jesus hard enough and rid himself of his demons he would be able to walk. But Jeremy was philosophical even about such folks. Frankl said that our last right as people is the right to react to any situation however we want. That’s a very difficult thing to do. Right now, if I were to punch you in the eye, you could decide to punch me back, or you could . . . try to find out why I hit you. . . . Even the most hurtful person is that way because of something that

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happened or didn’t happen earlier in life that made them unhappy. . . . Maybe they weren’t loved as a child. Still, Jeremy admitted, “It’s hard not to dismiss some people as completely off their rocker, . . . [as] so full of horseshit.” Throughout his life, Jeremy told me, being a wheelchair-basketball player has made it easier for him to meet and get to know other people. Basketball has always been the ice-breaker in my life. It’s the first thing that people know about me. . . . They don’t see me as just another guy in a wheelchair but as a wheelchair-basketball player. . . . If someone wants to get to know me, they can come up to me and ask about basketball. And then before you know it, we are talking about going to a movie together or going on a date or something like that. Jeremy acknowledges, however, that other people with disabilities may not have it as easy. “They struggle with meeting people because they feel that everybody sees them as different. So they say to themselves, ‘I don’t want to know them,’ because they don’t want to get rejected.” Jeremy thinks that some people shy away from people with disabilities because they assume that they are angry people, that they carry a chip on their shoulders. It is true, Jeremy believes, that some people with disabilities are angry about their predicament, and “rightfully so,” because “disabled people are on the bottom of the scrap heap.” Still, he told me: I’m just a very honest person. I’ll ask them, what do you want to know about me? What is going through your mind right now that would help you feel better about me? . . . They might want to know, ‘What happened to you? How do you feel about it? Can you have sex?’ These are the types of questions that come up. So when I meet someone and it’s a person with whom I’m going to spend some time, I say, let’s get it out of the way so we can start having fun, move past the barrier that is my chair. . . . Having this attitude has never backfired on me. I’ve never felt that I shouldn’t have been so open. I asked Jeremy what he thought about the rift between disabled athletes and nonathletes that has come up in this study. He acknowledged that some of the nonathletes have told him of their dislike for the wheelchairbasketball players, whom they described as arrogant and self-centered. Jeremy admitted that he has known players like that, but he simply tells them, “Well, you haven’t talked to me, because I’m not like that.”

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Jeremy believes that some of the nonathletes at UWW resent the wheelchair-basketball team because it receives so many positive accolades from the university community. They look at us and think, “Why does everybody love them so much?” Yet when I’m pushing my chair around campus or cruising in my power chair people won’t even look at me. They don’t realize that we still get that stuff too. But basketball has provided us with an outlet for people to see beyond our disabilities. Jeremy also thinks that some of the nonathletes may not have accepted their condition in the way that he has. But, he tells them: You don’t have to play basketball to be a happy disabled person. Has it made my life happier? Absolutely. I can’t even imagine my life without basketball. But you don’t need to be an athlete to be happy. Is your life going to be hard? Of course. You’re disabled. . . . Every day I look at some things I can’t do and have to decide whether I’m going to be upset about it or whether I’m going to accept what I am and move on through it. . . . Everything is going to be a little more difficult [when you’re disabled]. But you can do it. On this score, however, Jeremy agrees with some of the other players I interviewed who think that some people with disabilities give in too easily to physical and social constraints and do not challenge themselves to maximize their potential. When I see other disabled people who have handle bars on their chairs, or they have their mother or friend pushing them around, and they don’t really need it, that hurts me. . . . Maybe somebody told them they couldn’t push themselves and they believed it. I don’t know. . . . But it stereotypes me as somebody who needs a push too. I’ve had friends with me in the mall who have gotten chewed out by [passersby] for not pushing me. Truly. They say, “Why aren’t you pushing him? You expect him to push himself?” . . . These people weren’t trying to be mean. They thought they were looking out for my best interest. . . . They’ve just seen too many disabled people not being able to do anything for themselves. Jeremy also said, as have others in this study, that too many people with disabilities he knows seem content “to sit at home and draw social security. That’s no way to live.” Returning to his theme of struggle, he added, nothing

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in life is worthwhile if you haven’t struggled for it. “When I hear people say they’ve achieved something and didn’t work hard for it, I think you really haven’t achieved anything, because you didn’t push yourself, you didn’t struggle. Maybe I’m wrong about that, but that’s the way I look at it.” Referring to his own accomplishments, he concluded: It’s hard to be a wheelchair-basketball player. I’ve had to bust my tail for it. . . . I don’t want to be viewed as a pat on the back—you can play basketball, isn’t that nice, good job. I work hard to be good at what I do . . . [and] if I can show you by my example that you can be better at what you do too, well, that’s what I’m all about.

Matt Scott Matt Scott was born in Detroit, Michigan in 1985 with spina bifida. Like the other three players with spina bifida in this study, Matt had surgery to close the opening in his spine. Unlike the other players, Matt has full sensation in his legs and is able to bear weight on them and move them. He does, however, lack balance and does not have the lower-body strength to enable him to walk without assistive devices. He also is a bilateral foot amputee. From Matt, I learned that club feet is a condition sometimes associated with spina bifida. When Matt was younger, he told me, “I used to play all kinds of sports, run around twenty-four/seven, always pounding, pounding, pounding my feet.” He developed painful ulcers that eventually necessitated the amputations. Consequently, Matt uses a wheelchair for mobility. Matt’s father worked for the military in the area of weapons procurement and his mother was a restaurant manager. When Matt was five, his father got a job in Missouri, where the family lived for a year. Then his parents separated, and he moved with his mother and older sister to live with his aunt in South Carolina, returning to the Detroit area a year later, where he lived with his grandmother while his mother “got back on her feet.” For a while, his parents got back together, and Matt lived with both of his parents and sister. When they split up again, Matt moved in with his father, and his sister stayed with his mother. Growing up, Matt said, “Nobody in my family treated me as if I was different.” In some sense, he “didn’t know disability” as a social construct; it was just his “reality.” The schools he attended were accessible; the only minor inconvenience he recalled was having to go into the gym through a back door because the main entrance was at the bottom of a staircase. All of his peers were “perfectly fine with my disability,” he said, “perfectly fine with who I was. They were more than happy helping me with anything I needed, or getting help from me. Sometimes people struggle with getting help from someone with a disability. Not anyone I ever hung out with.”

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As for sports, Matt played basketball, baseball, and football with his friends. Sometimes he played in his wheelchair and sometimes he crawled around on all fours. When they played football, he was known as the best tackler in the group because he could get lower than anybody else and grab an opponent by the ankles. He also had above-average upper-body strength and could hold his own when he wrestled with his friends. Matt started playing organized wheelchair basketball when he was fourteen years old. He learned about the sport from his doctors, and he finally decided to try it. He described the first time he entered the gym as an epiphany. It was just amazing. Nothing like I expected—the smell of burnt rubber, chairs crashing. Everybody’s intense, hooting and hollering. It’s just a very fun-loving game. When I saw that, I knew I wanted to be part of it. . . . These guys are good. They can teach me a few things. . . . This could very well be the type of game I could enjoy and excel at. From that point on there was no stopping Matt, who made up his mind to become one of the best players in the game. He played juniors’ ball with the Sterling Heights Challengers, where a couple of the more experienced juniors, Mike Paye and Denny Muha, took him “under their wings.” He also attended Mike Frogley’s summer camps at U of I, and it was not long before he was playing (with Paye and Muha) on the NWBA Michigan Thunderbirds men’s team. These guys were stronger, faster, more skilled guys—not just a bunch of teenage kids. They had been playing for a very long time. . . . They challenged us, helped us acquire a better understanding of the game. . . . It was an intense environment . . . with so many guys playing on such a high level who wanted to train and get better. . . . We competed against the top men’s teams in the country, . . . against some of the best players in the world. Like Jeremy, Matt met Tracy Chenowyth at the 2001 US juniors’ team tryouts in Whitewater. Matt said that he was virtually unknown on the national scene at that time, and he “shocked a few people” with his ability, particularly his breakneck speed. (Matt is the fastest player I have ever seen play wheelchair basketball.) Thus, Tracy selected him for the team and hoped that Matt would decide to come to UWW when he graduated high school. At that time, Matt had expected to go to UTA, where he could have received a full-ride college scholarship. Other Michigan players (including Paye) had gone there; they even called the UTA connection the “Michigan pipeline.” But Matt, like Jeremy, wanted to play for Tracy.

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I felt that Tracy could take a player who wasn’t a blue-chip guy and build him into one. I thought he did a really good job with our [US juniors’] team. We had very limited time together. He ran the floor really well. He knew how to talk to his players. . . . I felt that Tracy would help me get to the point where I’d be one of the guys who was a perennial selection to the US men’s team. . . . And he hasn’t disappointed me since. Matt enrolled at UWW in 2005 and played on his first US men’s team the following year. He credits Tracy and the UWW program, including alumni Melvin Juette, Eric Barber, and Jeremy (Opie) Lade—all teammates on the 2006 US team—for much of his success. Speaking of Melvin and Eric, Matt said: Those guys have so much knowledge of the game that they can share with the younger players. . . . They carry themselves well. They are guys you can look up to, . . . not only as far as athletics go, but as far as being successful people. It’s really good for us to have them around. . . . They are like our big brothers. As for Opie, who is closer in age to Matt than Melvin and Eric: He has the qualities in a basketball player that someone like me can appreciate. . . . He expects a lot out of himself and his teammates. . . . I knew when I came here that he trained hard, and I wanted to train hard too. . . . He worked with me and taught me some things to do on my own. . . . He did everything that I knew he would when I decided to come to Whitewater. Before I interviewed Matt, other people had described him as the (future or current) Michael Jordan of wheelchair basketball. I asked him what he thought about this. “I’ve heard it,” he admitted, “but I take it with a grain of salt.” Michael Jordan is an icon. When you say basketball, whatever kind of basketball you’re talking about, you think Michael Jordan. . . . I am by no means there yet in my sport. I really appreciate that my hard work shows and that people acknowledge me as a good player. But that’s not going to make me . . . rest on my laurels. I still want to push myself to get better. . . . I have more goals to achieve for myself. I have a juniors’ world championship, but I don’t have a men’s gold medal. . . . I want to be the best in the world.

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Figure 7.3 Matt Scott at the 2006 Gold Cup in Amsterdam. Courtesy of the Organizing Committee of the Gold Cup 2006.

Matt acknowledged that some of the disabled students who do not play sports think of the wheelchair-basketball players as “snotty, stuck-up.” But anyone who knows Matt could not possibly think this of him. He attributes this “negative connotation” to ongoing competition between people who have different interests. “It’s even like that across different kinds of sports,” he observed. “Everybody thinks that the sport they play is better.” Matt’s primary concern, however, is not with disagreements among people with disabilities but with breaking down barriers between able-bodied and disabled people. That is why he enjoys putting on demonstrations through the Cornerstones for Success program. “I feel like this is a really good thing for disabled people,” he said. “It’s not like people think, oh, these guys are

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in wheelchairs and they play basketball. It’s like, these guys are really good. They see us for what we can do, our ability, not for our disability.” Matt is majoring in social work and plans to work in some area of human services, perhaps in a medical or criminal-justice setting, where he can help the newly injured or other people with disabilities. At the time of the interview, he still had two more years of eligibility playing at UWW. But,

Figure 7.4 Matt with the UWW team (2006). Courtesy of Gregg Theune, UWW.

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thus far, he said, “being here has been an opportunity, an experience I will never forget. So many wheelchair-basketball players have come through this program. . . . I’m just really glad to be a part of it.” He also remains appreciative of all the people in his life who have supported him—his family, coaches, and teammates, and the programs he was involved in before coming to UWW. “Without those programs and the people who supported me, I don’t know how much success I would have had.”

Joe Chambers Joe Chambers was born in Landsthul, Germany, in 1982 while his mother was serving abroad in the US military. He has never met his father and assumes he was the product of a one-night stand. When Joe and his mother came back to the United States, they lived in Kansas and Maryland before returning to his mother’s home state of California. They lived with his grandparents on a ranch outside of Davis (near Sacramento) until Joe was thirteen or fourteen years old. Then they got a place of their own in Davis. Currently Joe’s mother works in the accounting department at the University of California, Davis (UCD). As an adult, Joe is 6 foot 5 inches inches tall, with weight fluctuating between 230 and 250 pounds. He also was “a real big kid” when he was younger, he said, and actively involved in sports. Before high school, baseball was his passion, but he admits that he “was never very good at it.” In high school he played a little football until he started focusing on basketball. During his freshman year, Joe played half of the basketball season on the junior varsity team until he moved up to the varsity squad. The team made it to the state tournament, where Joe played in the Arco Arena, the home of the National Basketball Association (NBA) Sacramento Kings basketball team. They lost the second game in the tournament, but the experience was one of the greatest thrills of Joe’s young life. After a disappointing sophomore year, Joe’s high-school team went undefeated in league play in his junior year and made it to the state tournament again. By now, Joe was starting to establish himself as one of the best high-school players in the state. During the summers he participated in Amateur Athletic Union leagues and Big Man basketball camps, competing with college-caliber players in front of big-time college coaches and scouts.3 During his senior year, Joe was heavily recruited by several colleges and was set to go to the University of Southern California to play under coach Henry Bibby when the health problems that would change his life took hold. Joe’s senior year did not go well on several counts. Although he had established himself as the best player in his league—he won his league’s scoring title and made the senior all-star team for the entire Sacramento

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metropolitan area—his team did not play well. Toward the end of the season, Joe started having trouble with his left knee. At first, neither he nor his high-school trainer knew what was wrong. They thought it might be tendonitis, maybe just growing pains. After each game, Joe’s knee would swell up so badly that it looked “like four softballs piled into a little bag,” he said. His trainer would ice it up to relieve the swelling and the pain. Before each game, they would stretch it out and tape it up. Joe was reluctant to admit he had a serious injury because he feared it would ruin his prospects of playing college ball. For six months he endured it without seeking the advice of a physician. By this time, however, the swelling would never go down. Finally, he relented and went to see a doctor. An X-ray revealed a femur with a hole the size of an ice-cream scoop. The doctor was not sure what it was. “We don’t know if it’s just a big cyst,” he said, “or if it’s cancer.” At first brush, Joe was not too concerned about what the doctor said—“I just totally blew it off,” he told me. He had a game that night, and that was all he was worried about. At the game, Joe got into an altercation with a fan of the opposing team. I had something like 35 points on this team . . . and their crowd was riding me the whole game. My knee was killing me, and I told Coach to take me out of the game. It had been a frustrating year, and as I walked off the court I gave their crowd the finger. Right then, some big ole’ boy started coming across to me from their side of the court. I was like, okay, we’re going to fight . . . [and] I started walking toward him. We were right at the point of exchanging punches when I got tackled by my assistant coach [and] a cop grabbed him.4 As it turned out, that was the last game of stand-up basketball that Joe ever played. Shortly thereafter, he got a call from the doctor. He indeed had cancer, osteocarcoma, and would need to undergo chemotherapy right away and have half of his femur removed. He also was going to require knee replacement surgery and have a metal knee and two metal rods inserted in his leg. “I would be surprised if you ever played basketball again,” the doctor told Joe. As Joe recalled: That’s when it really hit me. That’s when the crying came on. I couldn’t believe this was happening. . . . I wasn’t thinking about all the stories you hear about cancer and how bad it is, whether it was going to kill me. All I was thinking about was, “Man, how am I going to get back on the basketball court? This can’t be the end of it.”

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When Joe began his chemotherapy treatments at a hospital in Sacramento, he did not want anyone from his high school to know he had cancer. All they needed to know is that he had a knee injury. But on his second night in the hospital he got a phone call from a Davis newspaper reporter inquiring about what was going on. Joe relented and admitted that he had cancer. Now everyone would know what was going on. He started receiving letters, and a lot of people wanted to visit him in the hospital. While he agreed to see some, at times he got in such a foul mood about his situation that he sent people away. In the early stages of his ordeal, Joe was in denial about the implications of his condition. He told the surgeon who was going to do the knee replacement, “Watch, I’m going to play basketball again.” But that’s when he learned about the seriousness of the type of cancer he had. Joe’s mother asked the doctor, “Can you tell us what other people you know who’ve had this type of cancer and surgery are doing?” The doctor replied, “Well, we don’t really have any that we’re following right now, because this cancer kills most people within five years.” After Joe finished two arduous rounds of chemotherapy within a year, he had the surgery, anticipating that the metal knee and rods would have to be replaced every three years. But because of his size and weight, Joe’s knee broke in six months. Joe and his mother, unhappy with the pessimistic prognosis of the surgeon, sought out a specialist in San Francisco, Richard O’Donnell, who had developed a new technology designed to increase the strength and durability of the artificial knee. Joe had surgery again, but O’Donnell’s knee broke in six months, too. The third time around O’Donnell added some special cement to reinforce the fittings, and this time it seemed to hold. Joe started working as a plumber with a friend who taught him the business, and was starting to make “good money.” Then, a year after the third surgery, Joe’s knee started bothering him again. He thought he had broken it, and when O’Donnell went back into surgery to look at it, he found that Joe had a raging infection. This time, instead of replacing the knee, O’Donnell inserted a metal spacer that prevented Joe from bending his leg and which was quite painful to manipulate. By now, Joe’s anger was started to build. The surgeries he had undergone were no small matters. Each one was followed by an extended period of recovery in the hospital, a good deal of pain, and an arduous regimen of physical therapy. This is what Joe’s life was like for two years following his diagnosis with cancer. This time, Joe was released from the hospital for home rehab and instructions about treating the infection. He had a PIC (peripherally inserted catheter) line inserted in his vein, which allowed him to self-administer medication to fight the infection; this he had to do every four hours. He also had to give himself shots in his buttocks twice a day to prevent blot clots.

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After the infection cleared, which took some time, O’Donnell wanted to give a knee replacement another try. By this time, however, Joe had had enough. He told O’Donnell, “I just want you to cut the leg off.” They sat in O’Donnell’s office for an hour. “Do you really want to do this?” O’Donnell asked. “I really want to try to save your leg. I’m willing to fight this all the way, till there’s nothing left I can do.” Joe had previously discussed his wishes with his mother. “If you really want to do this,” she told him, “it’s your call. You’re the one who has to go through it. . . . [and] deal with it afterwards.” A week later, Joe had his leg amputated, eight inches above the knee.5 Some forty staples were used to close the wound while it healed. The stump was huge at first, swollen with water. Joe described it as “a big water balloon.” The dressing on the wound had to be changed frequently, but it healed up well, with very little scar tissue. About six months later, Joe got his first artificial leg—with a hydraulic knee and foot—that he attaches by means of suction to a socket in his upper leg. Currently he walks with a slight limp but is able to move around quite well. He keeps a wheelchair in reserve, in case he has to travel long distances or otherwise be on his feet for an extended period of time, in order to avoid pressure sores that can develop on his leg. After the amputation, Joe’s anger over everything he had been through began to ferment. He got in with a “wrong crowd” of friends and started drinking heavily and getting into fights; he was even arrested a couple times. He quit his plumbing job and started working as a bouncer in a bar, which allowed Joe “to get paid to beat up people.” In retrospect, he realizes that he was “unleashing all my anger onto other people.” Joe’s mother encouraged him to see a psychologist or to join a group of amputees she had located in the San Francisco area, but he never wanted to do it. “I can’t go and tell all my feelings to some guy [or group] I just met,” he told her. Eventually, however, he did ask her to “find me something. Some sort of sport. There’s got to be some kind of wheelchair sport out there.” Through word of mouth, Joe’s mother had located Scott Harrington, a disabled athlete who coached the Sacramento Cagers wheelchair-basketball team. When Joe spoke with Harrington on the phone, Joe hesitated, thinking, “It’ll never live up to the old basketball.” But Harrington told him, “Just come on down to the gym. See what it’s like. Watch us practice. . . . [But] you should know that we get after each other a bit. We’re pretty competitive.” Joe replied, “You probably don’t know what competitive is.” When he arrived at the practice, it was another wheelchair-basketball epiphany. “This is the coolest thing I’ve ever seen,” he thought. “And it just took off from there. . . . All of a sudden I was able to play basketball again. All the drinking and fighting, I kicked it out the window right then.

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. . . That’s all it took for me to turn my life around. All I needed was to be on the basketball court again.”6 The Cagers played in what Joe described as a “laid-back league . . . with a bunch of older guys” who played for fun and exercise. Almost immediately he started to dominate, scoring some 40 points a game. Harrington recognized Joe’s talent and took on the role of his mentor. He asked Joe if it would be alright if he called Rod Williams, a former Paralympian who coached the San Jose Spartans, a higher-caliber NWBA team. When Harrington first called Williams, the Spartans coach responded, “Sorry, but all our spaces on the team are filled. We can’t do it.” Harrington insisted, “Just let me bring him down one time and watch him play.” As soon as Williams saw Joe play, he knew he wanted him on his team. And then Joe started to make a name for himself in the NWBA basketball community. Now Williams took up the mantle of mentor and steered Joe to think about parlaying his basketball talents into a four-year college scholarship. “I’d really like to keep you here for me,” he told Joe, “but you need to move on.” By now, Joe was four years out of high school. But the idea of going to college appealed to him.

Figure 7.5 Joe Chambers (left) and Jeremy Campbell (right) reaching for the ball at a UWW game (2006). Courtesy of Gregg Theune, UWW

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Figure 7.6 Joe at the 2006 Gold Cup in Amsterdam. Courtesy of the Organizing Committee of the Gold Cup 2006.

Williams made some phone calls and sent out a few emails to see what he could do. The coaches from UTA and the University of Arizona (U of A), as well as Mike Frogley from U of I, tried to recruit Joe for their programs. On a visit down to Arizona, Joe almost made a decision to go there, in part, because it was a warm-weather climate and closer to California. A week later, however, he met Tracy Chenowyth at a juniors’ tournament in San Jose. Jeremy Campbell and Matt Scott were there too. By now, Joe had heard about UWW’s reputation as the “undisputed best” college team. Joe was so impressed that he made a decision to forgo a scholarship and come to UWW to play.

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Joe told me that when he was at U of A, he got the impression that wheelchair basketball seemed to be viewed as “a fun little thing.” People were like, “Oh, it’s the wheelchair-basketball team. Isn’t it nice that they can do that.” At UWW, he realized, it is looked upon as a “real sports program . . . [that is] respected by everybody.” Joe sat out his first year in Whitewater to establish residency, but he practiced with the team and played with UWW alumni on the NWBA Milwaukee Bucks (see Chapter 3, note 7). “I learned so much in just a short time,” he said, singling out Eric, Melvin, and Opie as a “tremendous help” to him. And once he got on the court with Jeremy and Matt—“the things we did together were just insane,” he said. “I’ve been so lucky to have those type of people around me. . . . It’s been a hell of a ride.” At the time of our interview, Joe had been playing wheelchair basketball for just three years, making his first US team in 2006. “If I had gone to Arizona,” he told me, “I wouldn’t be on the US team right now. . . . They don’t have that competitive, winning edge.”

Figure 7.7 Joe at the 2006 Gold Cup in Amsterdam. Courtesy of the Organizing Committee of the Gold Cup 2006.

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Joe, big and tall and sporting tattoos on his arms and leg, is an intimidating presence on the basketball court. Although gentle and mildmannered off the court, he likes to get himself psyched up before a game. He thinks about how people told him he “was never going to be on the basketball court again,” and he goes into the game with his mind set on proving them wrong. “I do it to get a competitive edge,” he said. “I like to jaw at the other players, get after them, hound them hard. . . . If they try to jaw back, they’re already playing my game. . . . Most of them can’t take it.” At the time of the interview, Joe was majoring in sociology and was interested in working in the area of child protective services. He also was giving some serious thought to playing professionally in Europe after he graduated. Before that, however, he planned to win some more college championships. “I love being part of this program,” he said. “Coming to Whitewater absolutely saved my life. I really don’t know what I’d be doing now if I wasn’t here.”

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PART

III

Sociological Themes The Collective Narrative

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CHAPTER

8

Living With Disabilities Pathways to Wheelchair Sports

In Chapter 3, I noted that life-history research seeks to advance C. Wright Mills’s (1959) vision of the sociological imagination as an enterprise that grapples with the intersection of biography and history in society and the ways in which personal troubles are related to public issues. Moreover, life-history research has the added value of narrating people’s lives for the purpose of making connections to readers, enabling them to develop empathy with people who are often marginalized in society and whose experiences are often misrepresented and misunderstood (Berger and Quinney 2005; Goetting 1995). On the other hand, Jabar Gubrium and James Holstein (1999) are concerned that sociologists who tell stories of people’s lives not abandon their professional obligation to make analytical sense of these narratives. It is one thing, they argue, to allow “indigenous voices [to] have their own say,” it is quite another thing to abandon the responsibility to “complement and contextualize the explication of informants’ accounts, or nonaccounts, as the case may be” (1999: 599–600). In Part I, I attempted to provide this context by situating the study in terms of the history of disability as a social construction and by raising some conceptual issues regarding stigma as a social phenomenon. I also discussed the emergence of the disability-rights movement and the ways in which this movement initiated a profound shift in cultural attitudes and institutional opportunities for people with disabilities in contemporary society. In Part II, I introduced a social framing of the life histories in terms of the agency-structure problematic, linking study participants’ personal

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experience with collective narratives and highlighting the social-structural context in which individual agentive action was enabled, or disabled, as the case may be. In particular, I noted that involvement in disability sports provided the crucial link between participants’ personal circumstances and the affirmative goals of the disability-rights movement, and that the University of Wisconsin-Whitewater (UWW) was a pivotal institutional site in which this link was constructed and propagated. In Part III of this book, I explore these sociological themes further by narrating the collective experience that is expressed through the lives of the thirteen players interviewed in the study (see Rosenwald and Ochberg 1992). In this chapter, I highlight the formative family, educational, peer, and mentoring influences on their lives and the pathways they took to wheelchair sports. Then, in Chapter 9, I return to the supercrip critique that I introduced earlier in the book and examine the empowering and disempowering elements of competitive disability sports and the implications of the study for understanding some of the complexities of disability identity in contemporary society.

Family Influences on Children With Disabilities The family is arguably a key social-structural influence on the development of individuals and their capacity for self-efficacious agentive action (Gecas 1989). In their research on the family and disability, Laura Marshak, Milton Seligman, and Fran Prezant (1999) also found that families are among the most important social-support mechanisms that buffer or mediate the stresses and challenges that living with a disability entails. In a society that “generally views people with disabilities in distorted ways,” it is difficult for disabled children to develop a positive self-image (Marshak et al. 1999: 5). Under optimal circumstances, families provide children with the emotional support and positive definition of self that allows for a reframing of one’s impairment as a challenge rather than as a tragedy. As noted earlier, however, the ability of families to do this has been substantially aided by the broad cultural shift in attitudes and opportunities that have been engendered by the disability-rights movement. For the most part, but with some exceptions, the participants in this study came from family environments where there was at least one (if not two) nurturing parent who was able to advocate on behalf of their children and to obtain needed medical services either through private insurance or other means. Among the medical institutions that participants singled out as providing valuable services are the Rehabilitation Institute of Chicago (RIC) (Melvin Juette and Eric Barber), Shriners Hospital in Chicago (Amy Bleile), and the Canadian healthcare system (Mike Frogley). Although architectural modifications of the participants’ homes may have

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been required, only Amy Bleile reported any substantial obstacles to accessibility into or within her home. (This was following the divorce of her parents, when she was living in low-income housing.) Often, as young children, the participants said that they crawled on the floor longer than able-bodied children of their own age, but no one said they were unable to acquire the assistive devices they needed. For the most part, parents encouraged their children to maximize their abilities and to strive for independence. Jeremy Campbell’s parents told him that “lots of people can’t do things. It’s what you can do that matters.” Amy said, “I never got away with feeling sorry for myself, at least not for more than five minutes. My mom would kick me in the butt if I ever got that down in the dumps.” Christina Ripp’s mother even made her pull herself up onto the kitchen countertop, using her ribcage as leverage, to get items out of the cupboard. After his car accident, eight-year-old Jeremy (Opie) Lade’s parents were devastated, but they tried to be strong in front of him, which Opie said made him strong, too, and helped him think that he could “beat this.” Eric Barber grew up in an extended family milieu with a dozen or so cousins who never coddled him, even to the point of tackling him in his wheelchair when they played football. In retrospect, Eric is not sure “if they thought of [him] as disabled” and were doing some charitable good deed, but at the time Eric felt that they treated him “like everyone else, . . . not as their cousin with a disability.” Thus, it took Eric “a while to realize that [he] was different” and that having a disability “would keep [him] from doing certain things in [his] life.” Similarly, Matt Scott said that no one in his family treated him “as if [he] was different” and that he was unaware of “disability” as a category of social existence. And it was not until the sixth grade that Christina started to realize that she was “different because [she used] a wheelchair.” To be sure, in some cases, family resources were lacking or ineffective in shielding study participants from the difficulties encountered in school. Dan Ferreira felt estranged from his parents, who divorced when he was young. Dan’s mother was unable to protect him from the debilitating reactions of the special-education staff at the public school he attended who told him that he would probably muddle his way through school at best and then collect social security for the rest of his life. Thus Dan developed an angry, “woe-is-me” attitude toward his life. Jon Fraser described his family as “dysfunctional” and unable to compensate for “all the people . . . over the years . . . who said that [he] couldn’t do this . . . [or] that.” Amy was fortunate to have a supportive mother, because her abusive, alcoholic father thought that her physical problems stemmed not from cerebral palsy but from laziness.

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Education and Peers The school experiences of the participants were sufficiently diverse to make generalizations about this element of the disability experience difficult. Dan Ferreira, as noted above, had difficulty in an integrated school system, but he came into his own when he transferred to a special school for the disabled at Massachusetts Hospital School (MHS) where he felt empowered by being among other youths like himself. Eric Barber, who attended a segregated school until high school, had not even noticed he was different until then because all the other students had disabilities too; however, neither did he report any problems during his high-school years. Jeremy Campbell, Matt Scott, and Matt Glowacki reported no problems at all in the K-12 integrated schools they attended; and Glowacki even participated in a variety of extracurricular school activities—drama, debate, choir, cheerleading, and sports announcing. However, following his disablement from a gunshot injury at age sixteen, Melvin Juette was required to attend a special high school for students with both physical and cognitive impairments. Some of the students in his classes did not “seem capable of learning anything,” and Melvin resented “being treated like someone who was mentally disabled,” an all-too-frequent attribution in a society that has a distorted view of disability (Cahill and Eggleston. 1995; Marshak et al. 1999). Schooling also entails experiences interacting with school-age peers. Jeremy (Opie) Lade had to switch schools after his accident, because the one he had been attending was inaccessible, but he thinks the experience made him more outgoing because he was forced to make new friends.1 Dan and Jon Fraser, on the other hand, said that they felt alienated from their peers. Jon in particular told me about fellow students who made fun of him and resented him because they thought the teachers gave him special treatment. Amy Bleile reported shockingly serious emotional and physical abuse from both students and school staff, which led her mother to call in the local Human Rights Commission. Marshak et al. (1999) note that acceptance by school peers can be differentiated from friendships, and friendships can be as important as family during the developmental years of adolescence, helping to mediate adverse societal reactions and bolstering disabled youths’ self-esteem. All of the study participants—including those who had negative school experiences—reported having friends who valued them as individuals and included them in their activities. Jon even told me that he was not motivated to work hard enough to become an elite wheelchair athlete, not because he may not have had the potential to become one, but because he valued the time spent with friends more. Several of the study participants reported being included in recreational sports activities with friends during their youth and that their friends made

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rule accommodations to allow them to play in their wheelchairs. Opie played baseball positions like pitcher or first base that required less mobility, and he sometimes used a designated runner to round the bases. Matt Scott, like Eric, played tackle football with his friends, and he was even known as the best tackler in the group because he could get lower to the ground and grab an opponent by the ankles. Jeremy said that when he played sports with his friends they “treated [him] like anybody else” and never made him feel like he was “this poor guy in a chair.”

Adapting to Acquired and Congenital Disabilities Five of the thirteen players interviewed in this study had acquired rather than congenital disabilities. Although there may be as much variation among people within each of these categories as between them, acquiring a disability in later life may pose different challenges. As noted earlier, those born with congenital disabilities never knew a life that was any other way, although those with positive family supports seemed to have had an easier time accepting their condition than those who did not. They did not have to relearn the skills that able-bodied people who acquire a disability later in life previously took for granted. Marshak et al. observe that acceptance of a disability, whether it is congenital or acquired, hinges on the question of integrating disability as a “nondevaluating aspect of one’s identity” (1999: 130). Some people with disabilities and their families may go through a period of mourning over loss or regret about “what might have been.” But Marshak et al. also note that “mourning is not a precondition” for successful adjustment and that people do not always respond according to some patterned or formulaic therapeutic scheme (1999: 130; see Chapter 4). After Melvin Juette’s accident, for example, some people thought that he was in denial because he seemed to recover, psychologically speaking, so well. He attributes his positive adjustment to the support he received from family and friends, as well as his religious upbringing, which taught him “to accept the things that happened to people . . . and not mire in regret over what might have been.” Melvin remembered how his friends had reacted to James, a youth with muscular dystrophy from his neighborhood, whose negative attitude about his own disability at times made him unpleasant to be around. Melvin did not want his friends to feel that way about him. Melvin is not that unique in exhibiting such resilience in the face of an acquired disability. Mike Frogley’s parents taught him the value of hard work, which, they said, was more important than luck and talent in determining life outcomes. Mike said that he had always been motivated to do his best—and to be “better than anyone else”—at whatever activity

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he was pursuing. Thus, following his car accident and paralysis, he did not give into despair, literally taking “a deep breath . . . for a moment” and then deciding to move forward full throttle. “It would have been easy for me to look at myself and say, ‘being in a wheelchair is not as good as walking,’” he told me. But after working hard in rehabilitative therapy to maximize his potential and learning how to manipulate a wheelchair, his attitude was, “I don’t do things worse than anybody else. I just do things differently.” Even young Jeremy (Opie) Lade, emboldened by the fortitude of his parents, decided that he could “beat this.” Such responses to disablement are indicative of A. Manette Ansay’s (2001) observations about adapting to disability. Ansay, who suffered an illness that put her in a wheelchair for an extended period of her life, writes: It’s not that I believe the things that happen to us happen for a reason . . . [or] that things have a way of working out for the best. . . . But I do believe that each of us has the ability to decide how we’ll react to the random circumstances of our lives, and that our reaction can shape future circumstances, affect opportunities, [and] open doors. (Ansay 1999: 265) Jeremy Campbell’s philosophy of life based on struggle, derived from his reading of Viktor Frankl (1959), is equally applicable to those who have acquired and congenital disabilities. As Jeremy said: People tend to look at struggle and run from it. . . . I look at struggle and think, that’s how I can grow, learn from it, become a better person. . . . Every day I look at some things I can’t do and have to decide whether I’m going to be upset about it or whether I’m going to accept what I am and move on through it. Things are not always so easy for people with disabilities, however. Joe Johnson had been a very physically active youth when was he was diagnosed with Legg-Calvé-Perthes disease at eight years of age, eliminating the possibility that he could ever play able-bodied sports again. He became depressed, “not enough to be clinically diagnosed,” he said, “but enough to worry [his] parents.” For a while, he withdrew into solitude, until wheelchair sports showed him a way out of his malaise. Joe Chambers was even more devastated when he was diagnosed with bone cancer at the end of his senior year in high school, which eventually required an above-theknee amputation of his left leg. His long road to recovery was filled with much travail and angered volatility as he fell into a psychological abyss. If he had not found wheelchair sports, he may not have recovered. His story

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cautions us against presenting the struggle of overcoming adversity as “too clean [or] the transformation too complete” if it means deprecating “those who fail to rise out of the ashes” of despair (Frank 1995: 135). At the same time, it is perhaps the fear of becoming disabled that at least partly underlies the public’s discomfort with disability. People with disabilities remind the nondisabled of their own vulnerability. Indeed, only about 15 percent of people with disabilities in the United States are actually born with their impairment, and in some sense nearly everyone may be considered only “temporarily able-bodied,” as accidents, illness, or old age take their toll (Siebers 2006). This is also, as I explore further in the next chapter, one of the reasons that the notion of a common disability identity is so elusive, because what do people with such varying impairments that develop at varying times over the life course really have in common? Nevertheless, John Hockenberry asks a provocative question in response to the specter of this threat: “Why aren’t people with disabilities a source of reassurance to the general public that although life is unpredictable and circumstances may be unfavorable, versatility and adaptation are possible; they’re built into the coding of human beings” (quoted in Fleisher and Zames 2001: 205).

Involvement in Wheelchair Sports Successful life outcomes for disadvantaged youths typically entail exposure to positive adult mentors other than parents (Williams and Kornblum 1985). In this study, participants’ involvement in wheelchair sports was indeed facilitated by exposure to adult mentors who provided crucial support and guidance. First-generation UWW athletes Eric Barber and Melvin Juette were introduced to wheelchair basketball through Bob Trotter, the Therapeutic Recreation Coordinator at RIC. Eric was just thirteen years old at the time, and he did not initially like the sport—in fact, he said he “hated” it—because he could not get the ball to reach the basket. He did, however, find himself enjoying wheelchair softball and track and field, which opened up a whole new world, enabling him to travel out of state and to undergo improved physical conditioning. When Eric finally got into basketball, he became inspired by the legendary players he read about in Sports ’N Spokes magazine, and Trotter encouraged him to aspire to become one of them. Melvin, who was sixteen years old when he was introduced to the sport, was especially drawn to the camaraderie he felt with the other players and the way in which peers who were “so full of life” showed him that having “a disability didn’t have to stop [him] from leading a physically active life.” Having played sports all his life, he was inspired by the outstanding athletes whom he watched play on the Chicago Sidewinders men’s wheelchair-basketball team and whom he read about in Sports ’N Spokes.

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Mike Frogley, the first UWW player from Canada, did not initially like playing wheelchair basketball—it just didn’t compare to the stand-up game he had played before his car accident—but he found a niche for himself in coaching. Later, however, he met Reggie McClellan and Brent Foster, an outstanding player and a coach, respectively, in Canadian wheelchair basketball, who became mentors who propelled Mike onto the path of becoming an elite athlete. It was coach Ron Lykins who first brought a model of competitive elite athletics to the UWW basketball program, and it was Lykins whom Eric, Melvin, and Mike most credit for their successful athletic careers.2 And once Lykins opened the pipeline to Canada by recruiting Mike, Joe Johnson soon followed suit. Like Eric and Mike, Joe was not initially enamored with wheelchair sports; he did not consider them to be “real” sports but, rather, something that “disabled people do.” However, his parents encouraged him to get involved, and he soon realized that wheelchair sports offered the possibility of filling a void in his life, as he could once again experience the camaraderie with teammates he had previously enjoyed through stand-up sports—the pleasure of “being around the guys” and of working together to “accomplish a goal.” Second-generation players Matt Glowacki and Amy Bleile did not become involved in competitive wheelchair sports until college, but Dan Ferreira first came into his own as a wheelchair athlete when he transferred to MHS during his sophomore year of high school. Prior to that time, Dan had never heard of wheelchair sports for people with mobility impairments; he only had heard of the Special Olympics for the cognitively impaired. At MHS he got involved in a variety of wheelchair sports and even made the US developmental team for table tennis. Dan credits an MHS physical therapist, Theresa Kelly, for encouraging him to focus on basketball, and Tip Thiboutot, an older teammate on a men’s team, for encouraging him to play ball in college. And it was Mike, whom Dan met at a basketball tournament in Whitewater, who persuaded him to attend school at UWW. Jeremy (Opie) Lade and Christina Ripp enjoyed shooting baskets at Camp Wabeek, an Easter Seals program for disabled youths, but they felt out of place among other youths who had more serious impairments than they did. They sought greater challenges, and, after attending a UWW summer camp that was organized by Mike, they were on a trajectory to become elite athletes themselves. The summer camp program, and an older mentor, Ricky Chones, were instrumental in Jon Fraser’s desire to play college ball, too. By now, the first-generation players—Mike, Melvin, and Eric—had emerged as mentors to up-and-coming young players, modeling selfefficacious action for people with disabilities both on and off the court. They are part of the chain of mentorship that became part of the

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institutional culture of the UWW wheelchair-basketball program. Thus, as Opie matured and became a world-class player himself, he took on a mentorship role for younger athletes. Fourth-generation Jeremy Campbell is a case in point. As a youth, Jeremy had played a variety of wheelchair sports through the Lakeshore Foundation in Birmingham, which was a 50-mile round-trip from his home. Jeremy’s mother was steadfast in her commitment to driving him back and forth from Birmingham, sometimes as often as five times a week. Jeremy began focusing on basketball in his teens, hoping to receive a scholarship to play ball at a Division I university. He already was a nationalcaliber juniors’ player when he met UWW coach Tracy Chenowyth, who also was the coach of the 2001 US juniors’ team at the time. By then, Chenowyth had already begun to establish a legacy of his own as one of the best wheelchair-basketball coaches in the nation, and it was he who inspired Jeremy to forgo a scholarship at a Division I school to play basketball at UWW, a decision that Jeremy never regretted. Jeremy, who played with Opie on the US juniors’ team before coming to UWW, also credited Opie for much of his basketball success; and he even acknowledged Opie’s role as a model for mentoring others, so that Jeremy, too, could become part of the chain of mentorship tradition at UWW. As Jeremy said: Opie was the team leader when I got here, both on and off the court . . . He cares deeply about everybody in this program . . . [and] makes sure they’re in a place . . . to achieve success. . . . Opie has instilled a lot of these traits in me, to make me want to help people too. Matt Scott, another fourth-generation player, had similar experiences that brought him to UWW. Although Matt always played sports with his friends, he did not get involved in organized wheelchair basketball, which his doctors encouraged him to pursue, until he was fourteen years old. It was not long after that that Matt developed a burning desire to be one of the best players in the world; and after playing with the Sterling Heights Challengers juniors’ team3 and the Michigan Thunderbirds men’s team, he expected to play ball at a Division I university to help him achieve that goal. Like Jeremy, however, Matt met Tracy along the way and decided to attend UWW instead; and he credited Tracy, as well as Eric, Melvin, and Opie, for making him a better basketball player. Of the older mentors, Eric and Melvin, Matt said, “Those guys have so much knowledge of the game that they can share. . . . They carry themselves well. They are guys you can look up to, . . . not only as [athletes], but as . . . successful people.” Of Opie, Matt added, “He has the qualities . . . that someone like me can appreciate. . . . He expects a lot out of himself and his teammates.”

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Joe Chambers was an outstanding high-school basketball player before he developed the bone cancer that resulted in his leg amputation. After his mother sought out opportunities for her son to get involved in wheelchair sports, Joe met his first disabled athletic mentor, Scott Harrington, who coached a local wheelchair-basketball team. Harrington, in turn, introduced Scott to Rob Williams, a Paralympian athlete who coached a higher-caliber team. The chain of mentorship continued, as Williams encouraged Joe to pursue college ball. Joe’s exploration of his options led him to meet Tracy, as well as Jeremy and Matt, who convinced him that UWW was the “undisputed best” place to play. Thus he, too, decided to forgo opportunities to play for a Division I team; and he, too, has never regretted the decision that he made.

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CHAPTER

9

Competitive Sports and the Dilemmas of Disability Identity

Previously I noted the supercrip critique of competitive wheelchair athletics that overlooks or misconstrues the ways in which individuals’ agentive action was enabled by significant others and institutional resources. Here I want to explore another dimension of this critique—the question of whether competitive athletics offers an empowering or disempowering experience for people with disabilities. While many recognize the benefits of sports participation for people with disabilities, others question whether the model of competitive athletics is an appropriate one to emulate. Competitive disabled athletes, it is said, set the bar too high for people with disabilities and encourage the able-bodied society to think that social reforms are unnecessary. They also reinforce social systems of domination, equating individuals’ self-worth with coming out on top in the competitive struggle for achievement (see Chapter 2). In this chapter, I draw upon the entire body of interviews I conducted to develop a more nuanced view of competitive athletics as both a potentially empowering and a potentially disempowering experience for people with disabilities. While the athletic identity constructed in the free space of athletic competition at the University of Wisconsin-Whitewater (UWW) has had generally positive effects on the athletes who played there, it also has had unintended adverse consequences that reinforce the supercrip critique: a subcultural milieu that alienated the broader disability community and impeded the development of a collective identity or common vision for improving the lives of people with disabilities. Thus, what follows is a discussion of the unintended social fissures that developed between elite

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athletes and nonathletes within the disability community. I also examine the tensions between exclusionary and inclusionary aspects of the sport and between separatist and integrationist strategies of using sports for personal empowerment and progressive social change, and I consider the broader implications of the study for disability identity and the role of sports in the disability-rights movement (see also Berger 2008b).

Divisions in the Disability Community In Chapter 3, I documented the local history of the UWW program and its movement in a more exclusionary direction that catered to more competitive athletes. This process is typical of competitive sports subcultures, which entail selection and recruitment of players who have already undergone a degree of “anticipatory socialization whereby characteristics and roles of the subculture” have been previously enacted (Donnelly and Young 2001: 400). Thus, some (but not all) of the UWW players had prior socialization to the values and norms of competitive athletics—among them, working hard and sacrificing other interests to enhance one’s performance, becoming physically and mentally tough, and contributing to a winning team (see Chapter 2). If the players had not acquired this mindset previously, they were expected to do so now. Recall that even coach Tracy Chenowyth was taken aback when he first arrived at UWW in 1998, not being prepared for “what wheelchair basketball means [here]. It’s six days a week. . . . Very intense. A very elite mentality.” Earlier, I noted that John Truesdale, who founded the program in the early 1970s, expressed some regret that the program as it evolved under Ron Lykins and Mike Frogley in the 1990s had became “a little too specialized,” even “elitist.”1 As John told me: I had thought that the athletes would be good role models for the other kids, and help them, but it didn’t work out that way. We used to have a much more broadly based program, with intramural wheelchair football, softball, floor hockey, track and field. . . . But that stuff just went away, and it has never really recovered. Eric Barber, the second UWW player to make the US national team, added: We’re probably the victim of our own success. . . . Back when I first came here, we were still struggling to fill the team, still trying to get people to play. . . . But after a while we became pretty successful. We started winning a lot of games, going to the important tournaments, getting coverage in [wheelchair sports] publications, . . . doing really well.

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When Tracy arrived, he tried to reach out to more of the other disabled students on campus. Roseman Building, the campus facility that houses the Center for Students with Disabilities, the wheelchair-basketball gym, the physical therapy and weight/workout room, and an adjacent office where students have access to a computer, is the regular hangout for the players on the team; and Tracy has told the other students that these venues are open to them, too. I’ve tried to establish relationships, just talk to them, let them know that this isn’t just for the basketball team. They’ll meet some of the guys when they’re in here. I think the barrier’s being broken down. . . . [Before] this area had almost been off limits to the other students. I don’t think that exists anymore, but it’s not as strong a bond as I’d like it to be. Still, Tracy observed, a psychological boundary of sorts has developed between the players on the team and the other disabled students as a consequence of the mental conditioning that’s become part of the basketball program. As he explained: The mentality of the guys who have been successful in the program—being a no-nonsense, give-it-everything-you-got type of thing—is that it’s not just about basketball. We try to build that mentality about school, about social relationships, about everything. There’s a commitment and determination that these guys have that exists beyond the basketball court. . . . So I think that anyone who comes in here—if that person is just going to sit on the couch and fall asleep, or come in and just exist and not want to work out, not want to get better physically or mentally, not want to get on the computer and finish a class assignment, but they just want to hang out and be lazy—they’re not going to fit in here. Anyone who is dedicated to what they’re doing—that could be basketball, it could be school, whatever—they’re welcome here. Unlike proponents of the supercrip critique, Mike Lenser, the team’s physical therapist and trainer, has always viewed the athletes as “ambassadors for the disabled,” as people who could pave the way for others by projecting a positive image of people with disabilities. “But there’s a big disconnect here,” he acknowledged. “The athletes and nonathletes don’t relate to each other. . . . And of course some people don’t relate to sports at all, even able-bodied people.” With these comments, Mike suggested that lack of common interests, rather than player elitism, may lie at the heart of the divide between players and nonplayers. Jon Fraser, a non-elite athlete

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who joined the team during the Chenowyth era, concurred with this observation when he told me about the “close-knit feeling” on the team and observed that there are people in society “who play sports or who like sports and people who don’t play or who don’t like it.” People with disabilities “are no different,” he said, “They’re like everyone else.” Moreover, there is an esprit de corps felt by members of the team that was described as a “brotherhood” by Jeremy Campbell and as a “family” by Dan Ferreira. At the same time, recall that Jon was unhappy that his playing time on the team had been reduced when new up-and-coming players were added to the squad, which ate away at his confidence and caused him to feel badly about himself, indicating a downside of the UWW program’s overconformity to the performance ethic of competitive sports. Jeremy (Opie) Lade understands that not everyone has the same interests and priorities and that there are “people who don’t want to compete . . . [and] people like [him] who want to win all the time.” Still, as noted earlier, Opie has a hard time with those who he thinks project a negative image of people with disabilities and spoil the positive image that he tries to project. Recall that he thought disabled athletes had a “huge responsibility . . . to be seen as independent . . . so people aren’t saying, ‘Oh, he can’t do anything if we don’t help him.’” Opie added that he thought that some people with disabilities feign more dependence than they need and are not “pushing themselves to the limit of their independence.” The notion of pushing oneself to the “limit of their independence” is underscored in Matt Glowaki’s philosophy of “expectations,” which Matt thinks is the key ingredient for success in whatever endeavor one pursues. Unfortunately, the experience of all too many people with disabilities is that they are confronted and ground down by the lowered expectations of others (Marshak et al. 1999). Recall the lowered expectations of the specialeducation staff at Dan Ferreira’s school; and both Melvin Juette and Amy Bleile had high-school guidance counselors who discouraged them from going to college. Eric even wondered whether Brad Hedrick, the coach of the University of Illinois (U of I) team, doubted that an African American could succeed academically at a school like U of I. But even Dan, a victim of lower expectations, complained about people who aren’t trying to maximize their independence and who he thinks create a distorted view of disability. Recall his comment: I think you have a responsibility to present yourself positively to the rest of the world because there are already enough stereotypes out there. . . . Yet there’s some people who try to use their disability to their advantage. They might be getting a push, and they’re able to push themselves. . . . Do they really need a power chair? No. But they’re using one. In my opinion, that’s someone who’s deserving of a negative title for a person with a disability.

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Similarly, Matt was critical of the people with disabilities who he thinks lack initiative and who seem unwilling to seize the opportunities that are now available to them. Recall his comment: “The disabled community is an exact replica of any other minority community. And the biggest problem with that fact is that once you get the rights, the hardest thing to do is to get people to use those rights.” Matt even criticized the accommodations that UWW has made for its students with disabilities: “Whitewater has created a wonderful little Disney World for people with disabilities. They do everything for them.”2 Such views could be read by some as mitigating support for the social model of disability, as reinforcing a belief that society has already done enough to help people with disabilities and that there are no longer any external barriers to success. Joe Johnson, on the other hand, had another view of this issue. He admitted that when he was first exposed to wheelchair basketball after being diagnosed with Legg-Calvé-Perthes disease, he thought, “These are not my people.” After a while, however, he made new friends and began to feel a part of the group. Now he thinks it is rather unfortunate that some of his fellow athletes do not view themselves as having common interests with other people with disabilities. “It’s almost as if the wheelchair-basketball players see themselves as better than the rest of the disabled students on campus.” Joe said. “It’s a hierarchy type of thing. I do think we share a lot of common interests. But it’s going to take a lot of time to get everyone viewing it that way.” Similarly, Eric told me that he saw “both sides of the spectrum,” noting the downside of some athletes’ exclusionary attitude toward other people with disabilities. I know people who are in basketball or sports who look at themselves as upper echelon, who don’t want to have anything to do with people who use power chairs. . . . [There are even some who] think, sure I participate in these sports, but outside of that I don’t want to have anything to do with another person who has a disability. . . . [They] go to a club or a bar or any setting, and if they see another person in a wheelchair they’ll shy away from the place. . . . When they go to a restaurant they won’t sit in their own wheelchair. They want to sit in a booth. They want to disconnect themselves from their wheelchair or feel like they’re disconnected from it. Amy Bleile, who currently uses a power chair for mobility but who also played wheelchair basketball at both UWW and U of I, viewed the disunity among people with disabilities from what she called “the middle ground.” She has been criticized by athletes for using a power chair and criticized by nonathletes for thinking that she “was better than them because [she]

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played sports.” Amy expressed her dilemma this way: “All my life I’ve been discriminated against by able-bodied people. But before college I never encountered discrimination from within the disability community itself. So it was kind of difficult learning to fit between both worlds.” When Jeremy Campbell told me that he wants people to realize that it’s “hard to be a wheelchair-basketball player. I’ve had to bust my tail for it,” it reminded me of Mike Frogley’s observation about people struggling “with how we’re going to be perceived.” People will say they don’t want to be compared to a bar they can’t reach. Well, don’t try to reach that bar. . . . [But] don’t diminish the accomplishments of those who have chosen to work hard to achieve their goals. . . . It’s the natural evolution of wheelchair basketball for the athletes . . . to find the level at which they want to participate. . . . That happens in able-bodied sports. We’re starting to filter into the able-bodied model. Howard Nixon (2002), as noted in Chapter 2, thinks a way out of this dilemma is to develop a “continuum of options” ranging from ones that are appropriate for those who want to play casually to ones that are suitable to those who want to play at the elite level of the sport. Mike told me that he agreed with this proposition and has in fact developed and been working to implement an inclusive, five-level disability sports model for youths that begins with what he calls “introductory recreation and leisure” and moves on through “specific recreation and leisure,” “introductory athletics,” “competitive athletics,” and “specialized athletics” (Frogley and Williams n.d.).

Gender and Disability Another division within the disability community pertains to issues of gender. Overall, opportunities for women and girls to participate in organized athletics have increased dramatically in the past few decades. The women’s movement, the health-and-fitness movement, and media coverage of women in sports have facilitated this process. Importantly as well, US Congressional passage of Title IX legislation in 1972 declared “no person in the United States shall, on the basis of sex, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any educational program or activity receiving federal assistance.” Although men who controlled high-school and college sports programs initially objected to this legislation, because they feared it would reduce opportunities for young men in sports, much progress has been made for women in sports (Coakley 2004). At the same time, after more than a

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decade, the Women’s National Basketball Association (WNBA) which is sponsored by the National Basketball Association (NBA) has been unable to attract enough fans to turn a profit. Even women, by a margin of three to one, say they would prefer to watch an NBA game over a WNBA game (Dahlberg 2007). Like the larger society, involvement of women and girls in disability sports lags behind involvement of men and boys (DePauw and Gavron 2005). Although the women’s team that Mike Frogley went on to coach at U of I is arguably the best women’s collegiate team in the country, there has not been sufficient interest among women at UWW to maintain a program there (but see Chapter 3, Note 3). Amy Bleile, who did play with women’s teams at both UWW and U of I, thought that women athletes had to fight harder than men to get respect and were sometimes rather “petty and competitive with each other.” Thus she preferred to hang out with the guys. Christina Ripp doesn’t think that girls are pushed as hard to excel in sports and that playing with the boys made her “want to work harder” and be a better athlete. Still, she regretted that some women with disabilities continue to struggle with their body image, although she has gotten past her own struggles with “being different.” The issue of gender also came up in the interviews with Amy and Christina with respect to dating. Recall that Amy was annoyed with athletes who simply would not date women who used power wheelchairs and that

Figure 9.1 Mike Frogley coached the University of Illinois women’s basketball team to its ninth NWBA Women’s Division Championship in 2002. Copyright © 2002 Paralyzed Veterans of America, by permission of Sports ’N Spokes, photo by Curt Beamer.

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Christina was critical of men who just “want the perfect girl. . . . They have to be this pretty . . . have this good of a body.” When I asked the men about these gendered patterns of dating, they said that they noticed them, too, but some offered a different interpretation. Jon Fraser explained that he has been reluctant to date women in wheelchairs because it makes a relationship more difficult when two people have a disability, especially if one partner has a severe impairment. “I dated someone who . . . couldn’t walk or crawl,” he said, “couldn’t transfer in and out of her chair very well. And me being in a wheelchair, too, there’s not much I could do for her. . . . So it’s just a lot easier to be with an able-bodied person.” Matt Glowacki added that the outside world often makes it hard for two people in wheelchairs to date: A lot of times it doesn’t matter one on one. But when you go out in public, people stare, act incredibly stupid. . . . I had one guy in a restaurant come up to us and say “What do you guys do, bump wheelchairs together to have sex?” . . . I have to put up with enough in everyday life, so why . . . put myself and my date through that. Matt also offered some observations of his own on what it has been like for him dating able-bodied women. “You can usually tell right away,” he said, if a disability “is going to be a big deal or not—based on when you go out in public.” Matt said that it took his current girlfriend a while to get comfortable with the situation, but “she eventually stopped caring about it because she realized it really didn’t make a big difference.” Matt acknowledged that it “takes a remarkably compassionate individual . . . to say I can love that person.” For the men in this study, and others like them, wheelchair basketball is clearly an arena in which they can create and sustain a sense of masculine competence (Taub et al. 1999). In doing so, some may reproduce some undesirable traits of hegemonic masculinity, reinforcing hierarchical relationships within their community and, significantly, applying a “double standard” in their personal relationships with women. That men associated with progressive social movements sometimes reproduce the gender dynamics of the larger society is of course an old story (Kleinman 1996). Criticism of this attitude and behavior among wheelchair athletes is fair. As noted earlier, some disabled men at times seem to want to disavow their stigmatized status while also maintaining their masculine power and privilege. In my judgment, however, this identity dilemma should not cause us to dismiss the liberatory potential of their performative athletic endeavors and the ways in which they challenge conventional notions of normality.

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Mainstreaming Wheelchair Basketball Earlier in the book I noted that mainstream sports media such as ESPN do not seem to view wheelchair sports as having entertainment value comparable to billiards, poker, and hotdog-eating contests (see Chapter 1). In general, the people I interviewed in this study were troubled by this state of affairs. They want more than a patronizing “pat on the back,” as if others think that only “natural” bodies play natural sports and “unnatural” bodies play unnatural sports (see Shogan 1999; Snow 2007). They want legitimacy as real athletes, to be recognized for their accomplishments, perhaps even to get paid for them, and not be reduced to a stereotype— the supercrip—that denigrates them as inauthentic representatives of the disability experience, whether that attribution comes from the media, critical sports sociologists, disability-studies scholars, or other people with disabilities. During the interviews, I raised the issue of mainstreaming wheelchair basketball in the United States, with the National Collegiate Athletic Association (NCAA) accepting it as a varsity sport and the NBA marketing it in a manner similar to the WNBA. Currently the National Wheelchair Basketball Association (NWBA) is an amateur organization; players are only allowed to earn and raise funds for reimbursement of expenses. Even when the NBA sponsors NWBA teams, as they do with the Milwaukee Bucks, they generally view this support as charity, according to John Truesdale, as “something that makes them look like they’re helping the needy.” Although there are opportunities to play professionally for money in other countries, where there is less competition for the sports dollar, the key to mainstreaming wheelchair basketball is arguably its professionalization in the United States. Not everyone I spoke to is optimistic that this will ever happen, however. “I definitely think wheelchair basketball deserves a wider audience,” said John, “but there’s just so much going on out there in the way of sports. I don’t see how it fits into the larger picture.” Similarly, Mike Lenser described wheelchair basketball as “kind of down on the food chain” as far as sports are concerned. “To be truthful, I’m not optimistic,” he said. “Right now there’s so little publicity about it,” and outside of the bigger national and international tournaments, “the crowds at the games are usually pretty minimal, mainly family and friends.” Mike Frogley, on the other hand, thought that the problem facing women’s basketball is that it competes for the same fan base as men’s basketball. “It’s basically the same game,” he observed. “But wheelchair basketball is different. We should be able to carve out our own niche from a fan-support standpoint because we are a unique sport.” Joe Johnson added: If you promote it right, people will come out to support it. After all, it’s a good product. It’s not like the people who come to the

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game say, “What the heck is this?” People really find it entertaining. . . . They say, “That’s awesome! When do you guys play again? I’m coming. I’m bringing my friends.” Jon Fraser has had similar experiences. “I think if the sport were more widely known,” he said, “people would love to watch. One of my friends, her dad came to a game and he was like, ‘This sport is great! I like it better than [stand-up] basketball.’” Mike Frogley noted, however, that anyone who tries to market the sport will have to overcome the media and public “mentality that treats wheelchair sports merely as human interest,” as a story about supercrips perhaps, but not about legitimate athletes (see Hardin and Hardin 2004; Schell and Rodriguez 2001). This is not the Special Olympics. It’s a competitive sport. It’s about winning. . . . The key will be . . . getting people to see these guys as athletes, projecting an image of what a wheelchair athlete looks like, getting people to recognize players of differing ability, just as they do in able-bodied sports. So they can say, wow, Melvin Juette is a phenomenal athlete. He’s just spectacular. Or Dan Ferreira. He’s pretty good. He can play with some of the better players, but he’s not one of them. He just doesn’t have the athleticism. John Truesdale agreed with this sentiment. There could be a niche for wheelchair basketball. But it’s got to be validated by something external. That’s where the NCAA and the NBA come in. They [and their fans] need to realize what it takes to be an elite wheelchair athlete, what kind of training goes into it. . . . Right now the support that’s given to some teams is viewed mainly as charity. The participants in this study were unanimous in their belief that for wheelchair basketball to expand and achieve greater recognition as a legitimate sport it will need to open up eligibility to able-bodied players, as has been done in Canada, where the Canadian Wheelchair Basketball Association allows able-bodied people to play in Canadian competitions. This approach has been termed “reverse integration” by people in the field of therapeutic recreation and is a controversial reform that many involved in the sport (including the current leadership of the NWBA) oppose, thinking it would undermine the recreational and therapeutic purpose of disability sports and limit opportunities for people with disabilities to play (Brasile 1990; Lindstrom 1992; Nixon 2002).

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Joe Johnson told me that “[w]hen Canada first allowed able-bodies to play . . . there was a lot of mixed feelings. The common sentiment . . . was that ‘this is our sport. We can’t play stand-up basketball, so why should we let them play wheelchair basketball?’” But Joe saw some hypocrisy in this. “We want acceptance from these people. We’re saying come watch us play, but you can’t play yourself. I think if we started getting able-bodied people involved, the sport would grow.” Of course, Joe very much enjoys the fact that his brother and sister, who are able-bodied, got involved in wheelchair sports, too. Eric Barber agrees with Joe, thinking that the NWBA has an “old school” mentality that is self-defeating. “How can you grow the sport if you limit people from participating? . . . It’s called wheelchair basketball, not disabled basketball.” Joe added, “If you think about it, wheelchair basketball is like any other sport. If people just thought of the wheelchair as a piece of equipment, like a hockey stick is to a hockey player, or a baseball bat is to a baseball player, they would view it in a different light.” While Nixon worries that “reverse integration . . . can be complicated by a mismatching of structural aspects of sports and the abilities of participants with disabilities” (2002: 428), no one I interviewed felt that inclusion of able-bodied people would disadvantage people with disabilities, as long as the NWBA’s player classification system was maintained and able-bodied players were placed in the highest classification category (see Chapter 2). Tracy Chenowyth explained that if able-bodied athletes were permitted to play and placed in the Class III category, the competitive fairness of the game would be maintained. So much of the game is moving a wheelchair, and there’s really no difference between a disabled Class III player and a completely ablebodied person like me, functionally speaking, in a wheelchair. He can bend over and pick up every ball I can. He can . . . use his abs, trunk, and hip flexors for stability, speed, and balance. I actually think able-bodies are at a disadvantage because they don’t know how to use a wheelchair. And if they want to put in the time to learn, why not let them play? I’m not going to take anybody’s opportunity unless I work harder than them. It would actually increase opportunities for lower-classification players, because if you have more Class III’s wanting to play, you’d need more I’s on the team. It would also create more teams, which would be good for the sport. Mike Lenser concurred, noting, “I don’t see able-bodies taking over the game. How many are going to work hard at the sport to be able to play competitively? So let the game grow that way and see what happens. It would have the potential of getting so many more people involved.”

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Everyone I spoke with generally concurred that revising the eligibility rules would go a long way toward accomplishing what Nixon (2002) envisions as “genuine integration,” as opposed to reverse integration. According to Nixon, genuine integration entails interaction between disabled and ablebodied players that “is not affected by stigma, prejudice, or discrimination,” where “disabled competitors do not feel deviant, inferior, or specially favored because they are disabled,” and where “disabled athletes’ impairments . . . are recognized and accepted but do not [disadvantage them] . . . in competition . . . with their able-bodied counterparts” (2002: 428). A major obstacle to the integration of wheelchair sports, as suggested earlier, is that they lack legitimacy as sports per se. As long as this remains true, the transformative potential of wheelchair sports for reordering the way people think about able-bodied and disabled-bodied athletes— and about able-bodied and disabled-bodied people more generally—will be undermined. Brad Hedrick (2000), one of the most distinguished coaches in the game, thinks that major amateur athletic organizations like the United States Olympic Committee and the International Olympic Committee (IOC) could help change this situation. But up to now these sports bodies have been impediments to reform. While they have given their seal of approval to the Paralympic tournament as “para” Olympics, they have resisted even minimal integration of wheelchair events into the regular Olympic games. But why, Hedrick asks, did the IOC elevate recreational sports like beach volleyball and mountain-bike racing to Olympic status in 1996 while wheelchair basketball was deemed unworthy of inclusion (in spite of persistent efforts by Hedrick and others)? Why do Olympic sports organizations view wheelchair basketball as a less legitimate sport than, say, badminton or table tennis (or curling if one considers the winter Olympics) and continue to preserve the “complete programmatic separation” of athletes with disabilities from athletes without disabilities (Hedrick 2000: 74)? Why do these sports boundaries need policing? Is it because wheelchair athletes are not really athletes after all? Will their inclusion somehow diminish the Olympic games? How long will the “separate but (un)equal” model of the Olympics/Paralympics be maintained? The answers to these questions are as yet uncharted terrain for the disability-rights movement. Outside of the wheelchair-sports community, these claims have not really been advanced at all. But the people I have met through my research on wheelchair basketball point us in the direction of change. While they appreciate the opportunity to “get on the bus” of athletic competition, they are no longer content to “sit in the back” (Hedrick 2000: 74).

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Sports and Disability Identity When John Truesdale first introduced wheelchair basketball at UWW in the early 1970s, he had no idea that it would become one of the premier programs in the country, a place where elite athletes would come to hone their skills and bring their game to a higher level. On balance, he seemed pleased with what has been accomplished at UWW, but he regretted that the program left behind disabled students who might have been interested in playing more casually and recreationally. Mike Lenser had expected the athletes on the team to serve as “ambassadors” for the other students with disabilities, people who would project a positive image of people with disabilities and serve as role models for others. While this turned out to be true for dedicated players coming up through the ranks, Mike had not anticipated the divide that became apparent between the athlete and nonathlete students on campus or the ways in which people with disabilities would exercise internal surveillance over one another (see Davis 2001; Deal 2003). Thus, some of the players I interviewed were rather critical of nonathletes, who they believed subvert the cause of people with disabilities by lacking initiative or feigning more dependence than they require, hence failing to fulfill their moral obligations to represent their constituency in a way that the broader audience of able-bodied people will recognize as warranting alteration of power relations that stigmatize and marginalize people with disabilities. At the same time, others were critical of some athletes’ elitist attitude toward nonathletes and their unwillingness to associate themselves with other disabled people, as well as their use of politically incorrect language and questionable attitudes toward women with disabilities. Moreover, some informants reported that some nonathletes they knew resented and disliked the athletes, mirroring the condemnation of the supercrip that is prevalent among disability activists and scholars. These findings raise questions about the nature of disability identity and the role of sports in the disability-rights movement. The disabilityrights movement, as noted earlier, is fraught with diversity and internal divisions. Such disunity within social movements, as Robert Benford and Scott Hunt observe, “can be detrimental when it . . . diverts attention from the movement’s principle theme” (1992: 51). But the nature of that theme is precisely one of the issues that divides the disability movement. Some elements of the deaf community, for example, favor the maintenance of a separatist deaf culture as a linguistic minority group and are not particularly interested in integrating with the hearing society. Or take the National Federation of the Blind, which (in contrast to the American Council of the Blind) was the only disability organization that did not endorse the Americans with Disabilities Act (ADA), believing that special

144 • Sociological Themes

accommodations for the blind perpetuate the view of them as inferior, second-class citizens (Barnes and Mercer 2001; Fleischer and Zames 2001; Groch 2001). Sharon Groch notes that the mobility-impaired constituency has been the most pan- or cross-disability in its approach to disability issues, the one most likely to develop “disability consciousness,” a broader oppositional ideology that is inclusive of all forms of disability and through which adherents feel a common obligation “to act collectively on their own behalf” (2001: 98). Although the mobility-impaired constituency has organized around specific physical conditions (for example, cerebral palsy, muscular dystrophy, spina bifida, spinal-cord injuries), its members have been less likely than the deaf and blind to live and go to school in specialized residential communities where there is opportunity to interact in free spaces of autonomous association. Consequently, Groch argues, mobility-impaired people have been less likely to develop internal subcultural forms of oppositional consciousness and, through a process of frame extension (see Snow et al. 1986), more likely to adopt an external master frame of civil rights from which it based its integrationist strategy of social change. As we have seen, however, the wheelchair-basketball community has in fact developed its own subcultural milieu and is divided over the question of integration, that is, whether able-bodied people should be allowed to participate in the sport. The free space of association enjoyed by its participants has led to what Eric Barber called an “old school” mentality that is resistant to the modification of rules that would enable disable-bodied people to play alongside their able-bodied counterparts on an equal playing field, where (dis)ability does not matter, or as Karen DePauw (1997) suggests, where the sport is defined by the (in)Visibility of disAbility, as “prevailing hegemonic notions of what actually constitutes physicality” are challenged, “sport and disability [are recognized] as social and cultural entities that can and do change,” and “physicality [is] reinterpreted to represent the creative ways in which both the mind and body respond to challenges that occur on account of disability” (Promis et al. 2001: 48; see also Shogan 1999). As Arthur Frank (1995) observes, the disabled body can serve as a dyadic or communicative body, a body that has something to teach, which seeks a new integration of body and self and reframes what appears to be lacking as something replete with possibility. It could be argued that such deconstruction of the categories of disabled and abled bodies could be detrimental to the disability movement by undermining the disability identity and oppositional consciousness necessary for progressive social change and further implementation of the social model of disability. On the other hand, rethinking the desirability of disability identity may not be such a bad thing. As we have seen, competing claims regarding authenticity and inauthenticity can devolve into “policing

Dilemmas of Disability • 145

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action” that turns on itself and reproduces the same hierarchical patterns of inclusion and exclusion that people with disabilities have been fighting against (Davis 2001: 538). Besides, given the range of conditions that constitute “people with disabilities,” it is impossible for any one subgroup to legitimately claim to represent the totality.3 On the other hand, Linda Martín Alcoff and Satya Mohanty (2006) suggest that it would be unwise to dismiss the notion of disability identity or identity based on other social categories as no longer meaningful or relevant. As they write, “Identities are . . . social embodied facts about ourselves in the world,” about the way in which our social location is “distributed and hierarchically organized” (Alcoff and Mohanty 2006: 6). Alcoff and Mohanty also note, however, that identities are not fixed but always subject to an individual’s interpretation; people are free to accept or reject identity based on group membership so they may claim their own subjectivity, or sense of self, and choose to become the person they truly want to be (Galvin 2003; Giddens 1991). Indeed, Nick Watson (2002) found that the people with disabilities whom he interviewed did not consider “disability” to be a salient part of their identity. They did not dismiss their impairment as irrelevant—it was an undeniable fact of their lives—but neither did they internalize its significance (see also Deal 2003; Engel and Munger 2003; Schell and Rodriguez 2001). The paradox of identity politics, argues Watson, is that it involves a preoccupation with or reification of group boundaries based on hierarchical differentiation that reaffirms those boundaries rather than dismantling them (Galvin 2003; Philipson 1991). Although the disability-rights movement aimed to advance an affirmative view of disability identity based on the celebration of difference (see Chapter 1), the people in Watson’s study preferred to “negate impairment as an identifier” altogether (2002: 524). Like Watson’s informants, the participants in my study are by no means preoccupied with the nature of disability identity or their place in the disability-rights movement. They play for the love of the game, for camaraderie, for improved physical conditioning and psychological wellbeing. Their identities are not substantially invested in positioning themselves in the vanguard of disability rights, and in their day-to-day lives they do not think much about oppositional disability consciousness. At the same time, they remain open to alternative models of organizing disability sports, models that are inclusive and that provide opportunities for people with varying degrees of (dis)ability to participate at various levels of commitment and specialization. By way of conclusion, it is also important to note that the athletes whom I interviewed should not be understood as merely attempting to manage a “spoiled identity,” as Erving Goffman (1963) might have presumed, or as trying to compensate for “the assumed negative difference of their physical

146 • Sociological Themes

competence and bodily appearance,” as Diane Taub et al. suggest (1999: 1482). Rather, by devoting themselves to the game of basketball they love so much, they engage in oppositional identity work that subverts the hegemonic ideal of the “normal” body. This ideal, as Lennard Davis (2006a) reminds us, is a social construction that eludes us all. How many of us think that we are too fat or too thin, too short or too tall, too wrinkled or too bald, too dark-skinned or too light-skinned—the list goes on and on. Only when we are stripped of these misgivings can we truly be free to create and recreate our own subjectivity. Knowledge of and engagement with the social identities from whence we came is a necessary part of this process, but freely constructing identity requires a forward-looking vision of how our identities are part of a larger and more universal movement of liberatory social transformation (Berger 2007). Davis argues that “the ever-increasing trolling for missed identities” may have run its course and that we are now in “need of new cultural forms that will promote a concept of the subject . . . that derives its strength from knowledge of [not just] where identity has been but more [from] where identity is going” (2001: 538, 544). The disability-rights movement challenged “the idea of defective citizenship by situating disability in the environment, not in the body” (Siebers 2006: 12). Tobin Siebers thinks that “people with disabilities” as a social category will continue to remain useful not only as a means of advancing the collective interests of the disabled but as a resource for all of us to think about “fundamental democratic principles such as inclusiveness and participation” (2006: 25). Carol Gill (1994) hopes for the day not when her impairment will be deemed irrelevant but when disability will provoke a respectful curiosity about what I have learned from my differences that I could teach society. In such a world, no one would mind being called Disabled. Being unable to do something the way most people do it would not be seen as something bad that needed curing. It would be seen as just a difference. (Gill 1994: 45) Unfortunately, all too often society stigmatizes or otherwise devalues people who are different, whether that difference is based on (dis)ability, race, nationality, gender, sexual orientation, or whatever, denying people the opportunity to “make a difference” in the world (Henry and Milovanovic 1996). But according to Michael Ignatieff, it is our very differences, not just our similarities, that constitute the essence of what it means “to be a human being. . . . No other species differentiates itself in [such] individualized abundance . . . [and the] reality of difference, both fated and created, is our common inheritance, the shared integument that we might fight to defend whenever any of us is attacked for manifesting it” (2001: 28).

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Notes

1 Disability in Society 1. 2. 3.

4. 5.

Red-haired child actor Ron Howard played Opie Taylor in this classic 1960s sitcom. Disability studies is an interdisciplinary field of inquiry that includes scholars from across the social and behavioral sciences, the medical and rehabilitative sciences, and the humanities (Albrecht et al. 2001; Davis 2002, 2006b; Linton 1998). For those who survived their disability in these small-scale societies, there is evidence of role adaptation. The blind of Kanuri specialized in rope-making, and the blind of Besongye worked as musicians. The blind of San Pedro Yolox engaged in the practice of begging to contribute to their local kinship clan; they also weaved twine nets, sorted coffee beans and ears of maize, and pulled garden weeds. At times, they were expected to interpret dreams, thereby giving advice to others in their group. The large albino population of Cuna Indians on the Panamanian San Blas Islands, who were sensitive to direct sunlight, became night fishermen (Scheer and Groce 1988). Demonology and witch-burning were prevalent in colonial New England as well (Braddock and Parish 2001). Some disability scholars in the phenomenological tradition have critiqued the social model for obscuring the corporeal reality of physical and cognitive impairment and exiling it from sociological consideration. They have called for “an embodied, rather than disembodied, notion of disability” (Hughes and Paterson 1997: 326) that describes “the subjectivity of the lived body in the life-world” (Turner 2001: 253; see also Davis 2002; Shakespeare 2006).

2 Disability, Sports, and Basketball 1.

2. 3.

See, for example, Ashton-Shaeffer et al. (2001), Blinde and McClung (1997), Blinde et al. (2001), Greenwood et al. (1990), Guthrie and Castelnuovo (2001), Hopper and Santomier (1984), Paulsen, French, and Sherill (1990), Taub et al. (1999), White and Duda (1993), and Wilson (2002). The first official Gold Cup was held in 1979. The National Wheelchair Athletic Association grew out of the National Wheelchair Games (NWG), the first multi-event tournament that was held in the United States in 1957. The NWG was organized by Benjamin Lipton, the coach of the Bulova Watchmakers, a New York wheelchair-basketball team sponsored by the Bulova Watch company.

148 • Notes 4. 5.

See advertisements in Sports ’N Spokes magazine, published by the Paralyzed Veterans of America, 2111 East Highland Avenue, Suite 180, Phoenix, AZ 85016. In 2006–7 the NWBA began experimenting with a four-point classification scheme for its Division I and Collegiate divisions that is similar to the international system.

3 A Case Study of Competitive Wheelchair Athletics 1. 2. 3. 4. 5. 6. 7.

The Center for Students with Disabilities currently serves about 500 students a year and has an annual budget of over 1 million dollars. W. Lawrence Neuman notes that a purposive sample is appropriate when the researcher wants “to select unique cases that are especially informative . . . [or] to identify particular types of cases for in-depth investigation” (2003: 213). In 2008, UWW started up a women’s team again. Lenser and Chenowyth still held these positions at the time of this writing. Robert Emerson et al. define a thematic narrative as one that incorporates “several analytic themes or concepts linked by a common topic” (1995: 170). Warhawks is the official name of the UWW sports teams. The community team disaffiliated from the university when it received sponsorship from the NBA Milwaukee Bucks in 2001, although some of the Bucks players still regularly practice on campus to this very day.

4 The First Generation 1.

2.

3. 4.

5. 6.

For general treatises on structure and agency in sociological theory, see Alexander (1982, 1988), Archer (1988), Bourdieu (1977), Emirbayer and Mische (1998), Giddens (1979, 1984), Ritzer (1996), and Sewell (1992). For applications to life-history research, see Berger (1995), Berger (2008a), Brewer (1988), Farrall and Bowling (1999), Hubbard (2000), Juette and Berger (2008), and Messerschmidt (2000, 2004). Mustafa Emirbayer and Ann Mische (1998) divide agency into three component elements: the interactive or habitual, the projective, and the practical-evaluative. For a specific application of this scheme to life-history research, see Berger (2008a) and Juette and Berger (2008). Viktor Gecas (1989) argues that this is true for everyone, the able-bodied and disabled-bodied alike. Because of Melvin’s gang involvement and my interest in criminology, I spent more time with him than any of the other players, accumulating over twenty hours of interview material that covered a good deal of terrain outside of the area of disability and sports. We decided that his full story merited a book in itself, and we tell it in autobiographical format in Wheelchair Warrior: Gangs, Disability, and Basketball (Juette and Berger 2008). This is, of course, a reference to Michael Jordan. Melvin also showed me one of his favorite passages from Randy Snow’s book, Pushing Forward: A Memoir of Motivation (2001), in which Snow describes “The Challenger Pathway”: “It’s our life challenges that reveal our strengths. From our revealed strengths we identify our options. From here we develop a vision, and in the pursuance of our vision, as Aristotle said, we ‘realize our essence’” (p. 138).

5 The Second Generation 1.

2. 3. 4. 5.

Two second-generation elite players who were unavailable for interviews but who made substantial contributions to elevating the reputation and caliber of the UWW program were Jeff Glasbrenner, who played for the US national team, and Troy Sachs, who played for the Australian national team. DSS was not yet called the Center for Students with Disabilities. Matt also has served on the State of Wisconsin’s Easter Seals board of directors and on the Governor’s Rehabilitation Council, an organization that monitors and oversees the Division of Vocational Rehabilitation. See also http://www.mattglowacki.com/. Amy showed me a letter that she received from US Attorney Robert L. Teig dated August 9, 1993, in which he thanked her for “assistance as a witness in this case. . . . You showed

Notes • 149

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immeasurable courage and integrity in helping us make sure these crimes did not go unpunished. . . . Being a witness . . . meant you had to battle some very real fears and endure some great inconveniences. . . . At a time when everyone has concentrated on the very negative aspects of what has happened in Dubuque, I hope people don’t lose sight of a very positive facet. You and others who were concerned that justice was done came forward . . . and said ‘Enough. It stops here.’” 6 The Third Generation 1. 2. 3.

Mike Frogley provided me with this account. For information about different types of spina bifida, see Spina Bifida Association (http://www.sbaa.org) and National Dissemination Center for Children with Disabilities (http://www.nichcy.org). Also recall Amy’s remark, “The girls are so petty and competitive with each other, on the court and off.”

7 The Fourth Generation 1. 2. 3. 4. 5.

6.

UWW is a Division III university. At the time of this writing, Jeremy was thinking about going to graduate school at the University of Illinois and working under Frogley as an assistant coach. Joe roomed with Eddie Curry, who became a successful NBA player, at one of the camps. He also played with Tyson Chandler, another future NBA as well as US national team player. Later, Joe wrote a letter of apology to the opposing school. After each of his previous surgeries, a little bit more of the femur had been chipped away. Thus, Joe’s point of amputation is higher than it would have been if he had had his leg amputated right away. Nonetheless, Joe is appreciative of all the medical care he received (and especially of O’Donnell), and he is thankful that his mother had insurance coverage to pay for it through her job at UCD. Harrington had acquired his disability in an automobile accident. When Joe later came to UWW, Harrington decided to enroll, too, and play on the basketball team with him.

8 Living with Disabilities: Pathways to Wheelchair Sports 1. 2. 3.

Amy Bleile, too, was unable to attend her local elementary school and had to be bussed to an accessible school out of her neighborhood. Melvin was appreciative of a summer study-skills course he took from a UWW counselor, Allen Einerson, which helped rescue him from academic probation. Matt was especially appreciative of two more experienced juniors’ players, Mike Paye and Denny Muha, who took him “under their wings.”

9 Competitive Sports and the Dilemmas of Disability Identity 1. 2.

3.

UWW does continue to sponsor an intramural wheelchair-basketball program for students and a summer wheelchair-basketball program for teens. Randy Snow raises a similar concern when he notes that the credibility one gets for playing wheelchair basketball and “the security you find within this environment” can make it more difficult to move “beyond its safe haven” to a broader engagement with the outside world (2007: 62). According to data posted on the UWW website, however, UWW graduates with disabilities are employed at a rate of 90 to 95 percent, compared to an overall employment rate for people with disabilities of just 30 percent. Lennard Davis notes that the ADA covers conditions as varied as “obsesity, carpal tunnel syndrome, AIDS, deafness, dyslexia, attention deficit disorder, Down syndrome, and many other diverse conditions” (2001: 536).

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Index

agency (see personal agency) AIDS, 149 Akamanti, Jeanie, 8 albino, 147n Alcoff, Linda Martín, 145 Amateur Athletic Union, 110 American Council of the Blind, 143 American Foundation of the Blind, 131 Americans with Disabilities Act of 1990 (ADA), 15, 33–34, 143, 149n amputees/amputation, 26–27, 32, 64–66, 69, 97, 105, 113, 126, 130, 149n Ansay, A. Manette, 126 Arco Arena, 110 Arkansas Rolling Razorbacks, 49 artificial legs/knee (see prostheses) Atkinson, Robert 33 attention deficit disorder, 149 Ball State University, 37 Barber, Eric, 31–32, 35–36, 39, 45, 51–56, 59, 61–62, 63, 80, 86, 97, 107, 122–25, 127–29, 132, 141, 144 basketball, 3, 139–40 (see also disability sports, sports, wheelchair basketball) women’s, 139 history of, 24 Becker, Howard, 16

Benford, Robert, 143 Best, Joel, 17 Bibby, Henry, 110 Big Man basketball camps, 110 bipolar manic depression, 98 Birmingham Flying Wheels, 24 black-on-black crime, 48 Bleile, Amy, 6, 30, 31–32, 63, 77–82, 91–92, 122–23, 128, 135–37, 147n, 149n blindness/the blind, 9–13, 23, 143–44 Braille, Louis, 11 Buck v. Bell, 12 Bulova Watchmakers, 147n Burns, Frank, 34 Byrnes, Dan, 38 Califano, Joseph, 15 California Department of Rehabilitation (CDR), 14 Camp Wabeek (Easter Seals), 85, 89, 128 Campbell, Jeremy, 31–32, 97–105, 106, 114–16, 122–26, 129–30, 134, 136, 149n Canadian healthcare system, 59, 122 Canadian wheelchair basketball, 30, 32, 45, 60, 62, 70–73, 80, 128, 140–41 Canadian Wheelchair Basketball Association, 70, 72, 140 cancer, 32, 97, 111–12, 126, 130

160 • Index Carleton University, 58, 60 carpal tunnel syndrome, 149 cerebral palsy, 6, 7, 13, 27, 31, 32, 77, 79, 123, 144 chain of mentorship, 39, 128–30 The Challenger Pathway, 148n Chambers, Joe, 31–32, 97, 110–17, 126, 130, 149n Chandler, Tyson, 149 chemotherapy, 111–12 Chenowyth, Tracy, 31–32, 37–38, 86, 95, 97, 106–7, 115, 129–30, 132–33, 141 Chicago Sidewinders, 47, 127 Chones, Ricky, 94, 128 Clark College, 80 club feet, 105 Coakley, Jay, 19–22 Cremins, Bobby, 60–61 Curry, Eddie, 149n Davis, Lennard, 146, 149n deaf culture, 143 deafness/the deaf, 9–13, 23, 149n DeFrancesco, Sebastian, 75 Denver Rolling Nuggets, 32 DePauw, Karen, 22, 144 deviance, 16–17 disability (see also disability history, disability identity, disability rights, disability sports) academics/scholars/studies, 7–9, 20, 43, 139, 143, 147n acquired and congenital, 6, 30–31, 53, 73, 91, 125–27 architecture and accessibility, 9, 14–15, 17, 29, 59, 78, 85, 98, 105, 122–23, 149n body image among women, 91–92, 137–38 consciousness, 144 dating and, 82, 92–93, 137–38 developing countries and, 18 divisions in disability community, 66, 68, 73, 76, 81–82, 88, 96, 103–4, 108–9, 131–38, 140–41, 143–45 education and, 10–12, 13–16, 48, 52, 68, 74, 78–79, 85, 89, 93–94, 98, 105, 123–25, 134 family and, 45, 46, 52, 56, 62, 79, 84–85, 89, 98, 105, 110, 113, 122–25 gender and, 31, 82, 90–93, 136–38

healthcare/medical treatment and, 11, 23, 35–36, 46–47, 49, 52–53, 58–59, 69, 73, 77–78, 80, 89, 93, 98, 111–13, 122, 127, 149n impairment versus, 9 independent living movement, 14 masculinity and, 20, 82, 92–93, 138 medical model of, 11, 17 peers and, 46, 47, 69, 76, 79, 85, 89, 93–94, 99, 105–6, 124–25 phenomenological perspective on, 147n politically incorrect language and, 81, 143 poverty and, 11, 18 religion and, 9–10, 46, 102, 125 social model of, 17, 43, 135, 144, 147n special education and, 74, 78, 134 stigma/prejudice/distorted view of, 7, 9, 16–18, 44, 73, 121–22, 124, 134, 138, 142–43, 145–46 veterans, 13, 23–24, 75 disability history (see also disability sports) the Bible, 10 Colonial New England, 147n education of deaf and blind, 10–11 Enlightenment, 11 eugenics, 12 freak show, 12–13 involuntary sterilization, 12 IQ tests, 12 Middle Ages, 10–11 Nazi Germany, 12 pre-modern societies, 9–10, 147n rights movement, 13–15 Sparta, 10 World War I, 12 World War II, 12–13, 23–24 disability identity, 31, 72, 122, 125, 127, 131, 138, 143–46 athletic, 17, 20, 131 oppositional, 17, 144, 146 politics, 17, 145–46 spoiled, 16–17, 145 disability rights, 13–15, 44, 47, 66, 73, 21–22, 132, 135, 142–46 disability sports, 44 (see also Gold Cup, Paralympics, supercrip complaint, wheelchair basketball) benefits of, 20–21, 44, 83 competitive model of, 20–21, 34–37, 122, 128, 131–32, 134

Index • 161

1111 2 3 4 5 6 7 8 91 1011 11222 12 13222 4 5 6 7 8 9 20111 1222 2 3 4 5 6 7 8 9 30111 1 2 3 4 35 6 7 8 9 40111 1 2 3222

deaf individuals and, 23 football, 23, 74–75, 86, 132 genuine integration and, 142 history, 22–25 masculinity and, 138 mentors/role models, 21, 47, 49, 53–54, 60, 70, 75, 94, 127–28, 130, 149n (see also University of Wisconsin-Whitewater) pathways to involvement in, 127–30 racing/track and field, 32, 53, 70, 74, 83, 86, 90, 99, 127, 132 reverse integration and, 140–41 sit-volleyball, 32, 63, 66 sledge hockey, 70 softball, 23, 32, 53, 127, 132 subculture, 131–32, 144 table tennis, 23, 75, 128 transformative potential of, 5, 17, 138, 142, 144, 146 women and girls in, 23, 31, 82, 90–91, 137 Down syndrome, 149n Drive and Survive program, 60 Dubuque Human Rights Commission, 79 dyslexia, 149n Einerson, Alan, 48, 149n Emerson, Robert, 148n Emirbayer, Mustafa, 148n epilepsy, 10 ESPN, 3, 139 eugenics (see disability history) Evangelical Christians, 102 Everest & Jennings, 25 Expectations, 66, 68 family relationships, 45, 122 (see also disability) Ferreira, Dan, 31–32, 63, 73–77, 80, 123–24, 128, 134 Fine, Michelle, 6 Forrest Gump, 99 Foster, Brent, 60, 128 frame extension, 144 Frank, Arthur, 144 Frankl, Viktor, 101–2 Fraser, Jon, 31–32, 83, 93–96, 97, 123, 128, 133, 138, 140 freak show (see disability history) free space of association, 20, 144 Friedan, Betty, 13

Frogley, Mike, 31–32, 34–37, 45, 56–62, 63, 65, 69–70, 75–76, 82, 83, 85–86, 94, 99, 115, 122, 125–26, 128, 132, 136–37, 139–40, 149n gangs, 6, 46, 48 Gavron, Sharon, 22 Gecas, Viktor, 148 gender, 138 (see also disability, disability sports, sports, University of Wisconsin-Whitewater) Gill, Carol, 146 Glasbrenner, Jeff, 148n Glowacki, Matt, 31–32, 35–36, 63–68, 124, 128, 134–35, 138 Goethe, 49 Goetting, Ann, 33 Goffman, Erving, 8, 16–18, 145 Gold Cup, 6, 25, 39, 45, 51, 86, 88, 147n Groch, Sharon, 144 Gubrium, Jaber, 121 Guttmann, Sir Ludwig, 23 Hall, Bob, 75 Hamilton, Marilyn, 26 Harrington, Scott, 113, 130, 149n hate crime, 79 Hedrick, Brad, 51, 56, 75, 142 Heumann, Judy, 15 Hockenberry, John, 51, 127 Holstein, James, 121 Hunt, Scott, 143 identity, 146 (see also disability identity) Ignatieff, Michael, 146 Indianapolis Racers, 38 infanticide, 9 International Olympic Committee (IOC), 142 International Stoke Mandeville Games, 23, 60 interpretive biography, 30 Johnson, Joe, 31–32, 63, 68–73, 126, 128, 134, 139, 141 Jordan, Michael, 54–56, 107, 148n Joseph P. Kennedy Jr. Foundation, 24 Juette, Melvin, 5, 30, 31–32, 35–36, 39, 45–51, 52, 56, 59, 61–62, 63, 69, 80, 85–86, 107, 122, 124–25, 127–29, 148n

162 • Index Kansas City Wheelchair Bulldozers/Rolling Pioneers, 24 Kelly, Theresa, 75, 128 King Jr., Martin Luther, 13 Kitchen, Robert, 8 Knight, Bobby, 35 Kübler-Ross, Elisabeth, 51 labeling theory, 16–17 Lade, Jeremy (Opie), 3–5, 31–32, 39, 61, 83–88, 89, 94–95, 97, 99–100, 107, 123, 126, 128–29, 134 Lakeshore Foundation, 99, 129 Leahy, Arthur, 74 Legg-Calvé-Perthes disease, 32, 69, 126, 135 Lenser, Mike, 31–32, 37, 133, 139, 141, 143 life-history research, 30, 43, 121, 148n life-story research, 30 Lipton, Benjamin, 147n Lloyd, Earl, 23 Lykins, Ron, 34–36, 45, 48, 56, 63, 65, 86, 128, 132 Major League Baseball, 23 Man’s Search for Meaning, 101 March of Dimes, 13 Marshak, Laura, 122, 124–25 masculinity (see disability, disability sports, sports) Massachusetts Hospital School (MHS), 74–75, 124, 128 McClellan, Reggie, 60, 128 McDermott, William and Daniel, 79 medical model (see disability) mental retardation, 10, 98 mental illness/mentally ill, 11 Meredith, James, 13 methodology, 8, 30–31, 33 (see also interpretive biography, life-history research, life-story research) narrative truth, 33 narrative-interview approach, 31 Michigan Thunderbirds, 106, 129 Midwest Sociological Society, 7 Mills, C. Wright, 6, 30, 121 Milwaukee Bucks, 32, 116, 139, 148n Minnesota Timberwolves, 90 Mische, Ann, 148n Mohanty, Satya, 145 Muha, Denny, 106, 149n muscular dystrophy, 46, 74, 125, 144

Nader, Ralph, 13 NBC Sports Fantasy, 54 Naismith, James, 24 National Association for the Deaf, 13 National Basketball Association (NBA), 23, 110, 137, 139–40 National Collegiate Athletic Association (NCAA), 139–40 National Easter Seal Society, 13 National Federation of the Blind, 143 National Football League, 23 National Spinal Cord Injury Center, 23 National Wheelchair Athletic Association, 147n National Wheelchair Games, 147n National Wheelchair Basketball Association (NWBA), 25, 36, 39, 75, 86, 94, 99, 106, 114, 140–41 (see also wheelchair basketball) NBA-sponsored teams, 25, 32, 76, 90, 116, 139 National Wheelchair Basketball Tournament, 25 Neuman, W. Lawrence, 148n Nieman, Zac, 101 Nixon, Howard, 21, 136, 141–42 Nugent, Timothy, 24–26, 34 obesity, 149n O’Donnell, Richard, 112–13, 149n Olympics, 23–24, 142 oppositional movements, 13, 17 osteocarcoma, 111 osteogenesis imperfecta, 32, 73 Outsiders: Studies in the Sociology of Deviance, 16 Paralympics, 23, 25, 39, 45, 49, 51, 86, 142 Paralyzed Veterans of America, 13, 24 Parks, Rosa, 13 Paye, Mike, 106, 149n personal agency, 43–45, 47, 57, 64, 66, 68, 76–77, 79, 88, 102, 121–22, 131, 148n (see also self-efficacy) Phoenix Banner Suns, 32, 76 polio/post-polio, 13, 26 power wheelchair(s), 7, 46, 68, 76, 81, 85, 104, 134–35, 137 Prezant, Fran, 122 prostheses/artificial legs/knee, 64, 112–13 Pushing Forward, 148n

Index • 163

1111 2 3 4 5 6 7 8 91 1011 11222 12 13222 4 5 6 7 8 9 20111 1222 2 3 4 5 6 7 8 9 30111 1 2 3 4 35 6 7 8 9 40111 1 2 3222

Quickie wheelchair, 26 Rehabilitation Act of 1973, 14, 33, 122 Rehabilitation Institute of Chicago (RIC), 35–36, 46–47, 49, 53, 122, 127 juniors’ basketball team, 47–48, 53 Ripp, Christina, 31–32, 39, 83, 88–93, 97, 123–25, 128, 137–38 Roberts, Ed, 13–14 Robinson, Jackie, 23 Sachs, Troy, 148n Sacramento Cagers, 113–14 Sacramento Kings, 110 San Jose Spartans, 114 schizophrenia, 98 scoliosis, 31, 52, 98 Scott, Matt, 31–32, 97, 105–110, 115–16, 123–25, 129–30 Seligman, Milton, 122 self-efficacy, 44–45, 79, 122, 128 Shriners Hospital, 77–78, 80, 122 Shriver, Eunice Kennedy, 24 Siebers, Tobin, 146 Snow, Randy, 148n, 149n social constructionist view of social problems, 17. social difference, 17, 79, 146 social model of disability (see disability) social structure, 43–44, 47, 57, 64, 66, 68, 77, 88, 102, 121–22, 148n sociological imagination, 6, 30, 121 South, Justin, 101 Special Olympics, 23–24, 74, 128, 140 spina bifida, 32, 83, 88–89, 93, 97–98, 144, 149n spinal column (structure of), 27 spinal-cord injuries, 23, 26, 31, 46, 58, 144 sports (see also basketball, disability, TaoSports, disability sports, wheelchair basketball) benefits of, 21–22 the body and, 19 competition/competitive performance ethic, 20–21, 95, 131–32, 134 history of, 22–23 masculinity and, 19–20, 22 race/ethnicity and, 19–24 sociologists/sociology of, 19–20, 35 subculture, 131–32

women and girls in, 19, 22, 136–37, 139 Sports ’N Spokes magazine, 49, 53, 75, 127, 148n Steinem, Gloria, 13 Stigma: Notes on the Management of Spoiled Identity, 16 Sterling Heights Challengers, 106, 129 Stoke Mandeville Hospital, 23 supercrip critique/complaint, 7, 20–21, 35, 43, 56, 62, 131, 133, 139–40, 143 TaoSports, 49 Taub, Diane, 146 Teig, Robert, 148n therapeutic recreation, 13, 20–21, 23, 47, 140 Thiboutot, Tip, 75, 128 Thinking Body, Dancing Mind, 49 Title IX, 136 Trotter, Bob, 47, 53–54, 127 Truesdale, John, 29–34, 38, 70, 75, 132, 139–40, 143 United Cerebral Palsy Association, 13 United States Olympic Committee, 142 University of Arizona (U of A), 115–16 University of California, Berkeley (UCB), 13–14 University of Illinois, Galesburg, 24 University of Illinois, UrbanaChampaign (U of I), 24, 26, 30, 35, 51, 56, 62, 75–76, 86, 94, 97, 99, 106, 115 women’s wheelchair basketball team, 31, 76, 82, 90, 135, 137 University of Southern California, 110 University of Texas at Arlington (UTA), 99, 106, 115 University of Wisconsin-Whitewater (UWW), 5, 29, 122 Academic Support Services, 48 accessibility of facilities and disability services at, 29 Center for Students with Disabilities, 29, 133, 148n community basketball team, 37 Cornerstones for Success program, 65, 108 Disabled Students Services, 29, 34, 65–66, 85, 148n employment of graduates with disabilities, 149n

164 • Index initiation rituals at, 94 mentors/role models, 39, 45, 83, 97, 99–100, 128–30, 132, 143 summer sports program, 38–39, 86, 90, 128 wheelchair basketball program, 5–6, 30, 33–39, 45, 63, 83, 94, 97, 115–16, 128–31, 143 women’s wheelchair basketball team, 31, 80, 148n Veterans Administration (VA), 23–24 Vines, Harry, 49 Washington, Kenny, 23 Watson, Nick, 145 Weis, Lois, 6 Wenkman, Jackie, 85–86 wheelchair basketball, 3–4 (see also Canadian Wheelchair Basketball Association, disability sports, Gold Cup, National Wheelchair Basketball Association, Paralympics, Rehabilitation

Institute of Chicago, University of Arizona, University of Illinois, University of Texas at Arlington, University of WisconsinWhitewater) classification system, 26–28, 141, 148n history, 24–25 mainstreaming, 139–42 rules, 25 Wheelchair Basketball World Championship (see Gold Cup) wheelchair design, 25–26 (see also power wheelchairs) wheelchair sports (see disability sports, wheelchair basketball) Wheelchair Sports, USA, 25 Wheelchair Warrior: Gangs, Disability, and Basketball, 148n Williams, Rob, 114, 130 Wisconsin Division of Vocational Rehabilitation, 33–34, 148n Women’s National Basketball Association (WNBA), 137, 139