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"I'm not much different": Occupation, identity, and spinal cord injury in America

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"I'm not much different": Occupation, identity, and spinal cord injury in America

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Content NOTE TO USERS This reproduction is the best copy available. UMI "I'M NOT MUCH DIFFERENT": OCCUPATION, IDENTITY, AND SPINAL CORD INJURY IN AMERICA By Mats Eric Ken Asaba A Dissertation Presented to the FACULTY OF THE GRADUATE SCHOOL UNIVERSITY OF SOUTHERN CALIFORNIA In Partial Fulfillment of the Requirements for the Degree DOCTOR OF PHILOSOPHY (OCCUPATIONAL SCIENCE) May 2005 Copyright 2005 Mats Eric Ken Asaba UMI Number: 3180414 Copyright 2005 by Asaba, Mats Eric Ken All rights reserved. INFORMATION TO USERS The quality of this reproduction is dependent upon the quality of the copy submitted. Broken or indistinct print, colored or poor quality illustrations and photographs, print bieed-through. substandard margins, and improper alignment can adversely affect reproduction. In the unlikely event that the author did not send a complete manuscript and there are missing pages, these will be noted. Also, if unauthorized copyright material had to be removed, a note will indicate the deletion. UMI UMI Microform 3180414 Copyright 2005 by ProQuest Information and Learning Company. All rights reserved. This microform edition is protected against unauthorized copying under Title 17. United States Code. ProQuest Information and Learning Company 300 North Zeeb Road P.O. Box 1346 Ann Arbor. Ml 48106-1346 11 ACKNOWLEDGEMENTS It is difficult to describe the breadth of feelings that I have experienced over the past tew years. At times, the dissertation process has been a very lonely one, and yet, it has also been filled with interconnections and relationships made possible by the many wonderful people I know as family, friends, and colleagues. Overall, the process of writing this dissertation has been an amazing experience, affording opportunities that I will value throughout my life and upon which I will continue to reflect. I have many people to whom I wish to express my appreciation. I am grateful and touched by the participants who volunteered their time to participate in this project and who shared their stories with me. Their willingness to let me be part of their lives and their ability to share personal experiences has not only been a scholarly encounter, but a series of personally meaningful events. I hope that I have been able to bring forth the power of their stories. I wish to thank my committee chair. Dr. Jeanne Jackson, for whom I have everlasting respect as a teacher, researcher, leader, and as a person. Dr. Jackson has helped me see endless possibilities for occupational science. I feel deeply honored to have had the opportunity to conduct my dissertation research under Dr. Jackson and to learn from a mentor whose scholarly insights as well as guidance inspired me daily. I wish to thank my committee members, Dr. Florence Clark, Dr. Cheryl Matting'ly, Dr. Donald Polkinghorne, and Dr. Ruth Zemke, all, from whom I have been fortunate to learn first-hand, as well as. whose scholarly works have been greatly influential to me. Everyone in my life has had an instrumental role in the completion of this dissertation; every encounter in some way has contributed. I have been fortunate to be surrounded by wonderful colleagues and friends, who have listened, critiqued, discussed, and played with myriad ideas pertaining to concepts of occupations, identities, and disabilities. There are not enough words to describe my gratitude for these fellow doctoral students who have engaged with me, in this ongoing exchange of ideas. Melissa Park for challenging me to consider a breadth of theoretical perspectives and for her interminable commitment to pursuing excellence in scholarship. Christy Biliock for her helpful feedback and commitment to meeting over the years, even before this research commenced. Clarissa Saunders-Newton, Don Fogelberg, and Esther Hueker for their feedback and supportive words of encouragement during group meetings. I wish to thank my friends who are spread across the world, my fellow classmates, my fellow international comrades, and the USC faculty. 1 am grateful for the editorial assistance provided by Faryl Saliman-Reingold. I wish to thank Audra Sternke, Melissa Bare, and Julee Eliott for their enthusiastic participation in the OT590 seminar that always left me with interesting ideas with which to play. I wish to thank the members of the research grant led by Dr. Clark and Dr. Jackson, for allowing me to be a participant in the meetings over the years. I also want to recognize and thank the California Foundation of Occupational Therapy for the 2003 research grant, which was used toward this project, and the members of Phi Beta Kappa Alumni of Southern California for the 2004 scholarship in support of an international doctoral candidate. 1 want to extend a special thank you to Candice Huang for her continual support and bright smile when I could not seem to find that energy within me, to Wsnchun Qu for his motivational words of wisdom, and to Jalal Shawwa and his family for their unconditional encouragement. Finally, I am most grateful and appreciative for my parents and brother, for they have provided endless encouragement and support, afforded an environment ir. which to pursue my goals, and have created a sense of home where I know that I always belong. V TABLE OF CONTENTS ACKNOWLEDGEMENTS ii ABSTRACT ix CHAPTER 1 1 Introduction 1 A Story: The Humdrum Of A Day In Wesley's Life 1 The Twist: I'm No Different 3 Background To The Problem 7 Purpose Of Study 13 Significance Of Study 14 Relevance To Occupational Science 14 Relevance To Occupational Therapy 15 Organization Of Dissertation 17 CHAPTER 2 20 Introduction 20 Conceptualizing Occupation 21 Identities In Occupational Science 23 Section Summary 26 Social Construction Of Disability 27 Reviewing Perspectives Of Disability 31 Normative Perspectives 32 Biomedical And Moral Perspectives 34 Economic Perspectives 36 Social Perspectives 38 Section Summary 40 Construction Of Identities 41 Rejecting Some While Embracing Other Theories On Identities 43 Outlining A Practice Theory Of Self And Identity 45 Figured Worlds: An Initial Context Of Identity 47 Positional Identities: Social Position And Power 54 Authoring Selves 58 Linking Back To Occupational Science 62 Section Summary 63 The Potentiality Factor In Occupation 64 Section Summary 68 Chapter Summary 69 CHAPTER 3 71 VI Research Method 71 Situating This Study Within A Broader Study 74 Participant Selection 75 The Participants 78 Wesley 80 Rosalyn 80 Sam 80 Dylan 81 Data Collection 81 Interviewing Process 83 Semi-Structured Interviews 84 Narrative Interviews 85 "Hanging Out" - Participant Observation 87 Data Handling 91 Data Analysis 93 Transcription 94 The Analytic Process 96 Thematic Analysis 97 Coding 97 A Shift In The Analysis 100 Narrative Analysis 100 Rigor of Method 102 Ethical Responsibility 106 About the Researcher 108 CHAPTER 4 112 Wesley's Story 112 "I Was The First One Who Tried It" 113 "Back Into The Real World" 114 Disability In An American Workplace: ''Don't Treat Me Any Different" 116 Caliwestech: Work As A Figured World 121 Caliwestech: Symbols Of Power And Privilege At Work 124 Becoming A Tennis Player: Going To San Diego 129 Historical Overview Of Wheelchair Tennis 131 The R-econnection With Tennis 135 Objects In Figured Worlds: "That Is Exactly What I Need'" 137 Retiring From Tennis 141 Bringing Figured Worlds Together: "Forget That I'm Disabled" 143 Chapter Summary 146 CHAPTER 5 149 Rosalyn's Story 149 "I Never Expected It To Happen" 150 Meeting Rosalyn 152 A World Of Drugs: "My Main Focus - To Be High" 155 Figured World Of Mothering: "It Just Made Me A Better Person" 157 Social Dynamics Of Power 170 Language As Power: "I Don't Do Anything" ' 171 Social Position As Power: "You And I Have The Same Tasks Everyday" 178 Chapter Summary 188 CHAPTER 6 191 Sam's Story 191 Meeting Sam 192 "I Think I Broke My Neck" 193 "They Forgot My Wheelchair" 196 "I Don't Like Being .Around People in neelchairs" 198 Disability: A Dominant Social Voice 201 The Voice Of "Living Low" 209 The Voice of "Semper Fi" 216 Clashing: "Nobody Ever Dreams Of Being With Somebody In A Wheelchair". 219 "Hc.iey, Watch Out For That Curb" 224 Orchestration Of Occupations 227 Chapter Summary 230 CHAPTER 7 233 Dylan's Story 233 The Power Of Positive Thinking 235 The Two Turning Points 237 Self-Authoring And Mediating Devices 240 Facing Disability - Adding Complexity To The Construction Of Identities 246 The Sex Video 246 Painting Cups 249 Shifting And Refiguring Worlds 251 Going To The Beach - Exploring Potentiality 254 The Grilled Cheese Sandwich 256 i'he Bus As A Symbol Of Pride 259 A Rite Of Passage 262 Toward Conceptualizing Potentiality In Occupation 263 A Basis For More Agency - Shades Of Potentiality ..268 Chapter Summary 273 CHAPTERS 275 Conclusion 275 Contribution To Occupational Science 277 Occupations And Social Ideologies 277 viii Power Of Ordinary Occupations 280 Occupation As A Lens For The Broader Society 284 Contribution To Occupational Therapy 285 Chapter Summary 287 REFERENCES 289 APPENDIX A 304 Informed Consent 304 APPENDIX B 308 Recruitment Poster 308 APPENDIX C 310 Categories Of Sample Questions 310 ix ABSTRACT This dissertation is based on an 18-month ethnographic study focusing on the experiences and lives of four individuals living with spinal cord injury. The processes of creating and expressing identities through occupations within the context of daily life are explored through interviews, participation, and "hanging out." In particular, an emphasis is placed on the actual doing and experiencing of momentous as well as ordinary occupations. The findings in this study suggest that occupations are not enacted within neutral socio-cultural worlds, but envelop the socially charged complexities of myriad discourses existing within a broader social milieu The participants in this study orchestrate a repertoire of occupations within multiple contexts, both of which are frequently imbued with undertones of social power and privileges. The author suggests that it is through the experiences that come from the actual engagement in occupations, sometimes the seemingly simplest occupations, in which powerful possibilities existing within people are felt as potentiality. The findings from this study also suggest that sometimes the most unexpected, ordinary, and seemingly trivial occupations emerge as the most powerful in revealing the continuous and sometimes arduous process of crafting identities. I draw heavily on, and in a way enter into dialogue with, a practice theory of self and identity proposed by Holland, Lachicotte, Skinner, and Cain (1998), to lay out several contexts in which to explore the construction of identities. I attempt to build on research in occupational science, continuing to expose the complexity of occupations and the processes in which these individuals create and shape multiple co-existing identities through active participation in life. This dissertation is about creating, shaping, and expressing who one is through what one does, and it is about living with a disability - specifically a spinal cord injury - in the 21 st century. 1 CHAPTER 1 Introduction I begin this chapter, and in fact this dissertation, with a story. It is only the beginning of a story, really quite ordinary, and perhaps even mundane. However, it is within the subtle details and the humdrum of everyday events underlying the storyline where a most fascinating discovery begins to emerge. This finding is looming in the background ready to be unearthed. This is a story about Wesley in the present-day United States. A Story: The Humdrum Of A Dav In Wesley's Life The alarm goes off. Wesley turns toward his nightstand and strains to take a glimpse at the numbers displayed on the chirping clock. The clock reads 7:00 o'clock. He briefly contemplates tapping the snooze button foi some extra minutes of rest, but decides to resist the urge for procrastination and instead rises to begin his day. Wesley takes a shower and completes his morning routine of grooming activities before getting dressed. As is often the case on a Monday morning, Wesley glances over at the clock sitting on his nightstand, realizing that he needs to be on the highway before the Southern California traffic gets too heavy. Wesley heads for the door leading to his garage. He grabs a banana and some yogurt from the refrigerator, throwing the snacks into his bag before leaving. Wesley lives only 15 miles from work, and he loves the 30 minutes spent on the highway because he enjoys driving. His luxury peari white sport coupe is a prized possession with a V-8 engine, soft cream color leather interior, onboard navigation system, and climate control. As Wesley cruises down the highway, his car shines v ith elegance, symbolizing the success that he otherwise only modestly acknowledges. When Wesley arrives at his office, a virtual tray of e-mail awaits his reply, and several tasks are standing by for his approval. Wesley is a manager for a well- known computer-based technology company, with his jurisdiction primarily in customer service and support. Most of what Wesley does at work involves dealing with immediate as well as more long-term problems with software or hardware in order to find solutions to issues that clients are experiencing. As a manager, Wesley is also responsible for staff training and supervision of personnel within his division. It is this fast-paced environment and often demanding responsibilities that drives Wesley to rise in the morning, feeling the desire to make a difference at work. Despite what appears to be a busy and challenging schedule, Wesley enjoys the job and the environment within which his work takes place. By mid-morning, Wesley has responded to his first batch o f e-mail, checked in with his staff, and attended a meeting. In just over an hour, it will be time for lunch. During lunch, Wesley leaves the company premises, heading down the road to a new Thai restaurant. For Wesley, lunch serves as a reprieve allowing him to break away from the stress of the office. He sees this time as essential in order to be more productive in the afternoon. However, this respite does not necessarily mean being alone. Today. Wesley leaves for lunch with his colleague Peter. After lunch. 3 Wesley returns to the office and continues to work on tasks from the morning. At the end of the day, Wesley organizes his office and leaves for the gym. The gym is only minutes from his office and on his way home. Today, Wesley spends about 1 hour on strength training and cardiovascular conditioning. Then he heads straight home, arriving back in his garage at around 6:45PM. Wesley heats a chicken pot pie in the microwave oven while opening his mail. If not ordering take-out or actually eating out, dinners usually involve the microwave oven at Wesley's house. When the microwave beeps, indicating that dinner is ready. Wesley grabs a can of beer and takes his pie to the coffee table by the television. He watches a portion of the evening news and then turns to his rented DVDs, currently in the midst of watching the second season of "The Sopranos" series. Wesley's living room is equipped with an impressive 48-inch television and an elaborate multimedia sound system. A set of plush recliner chairs and a couch are positioned in front of this extravagant display of technology. This particular evening, the clock strikes ten before Wesley decides to get ready for bed. The Twist: I'm No Different In general, Wesley has been introduced as a man who enjoys driving, exercising, watching movies, and who has succeeded as a manager at a computer- based company, and his story is one to which I will return later. One might wonder where the twist to this plot lies. The twist in fact underlies the entire story, because what I have not revealed is that, over 25 years ago, Wesley had a diving accident 4 resulting in a spinal cord injury with subsequent tetraplegia 1 . I believe that if I had introduced Wesley as someone with a disability at the beginning of this story, the storyline would have been interpreted quite differently. Inevitably, if Wesley had been introduced as having a spinal cord injury, the context and premises for the story would have been altered, infused with socially informed and historically rooted images associated with disability. The twist then, has to do with how disability is largely a socially constructed phenomenon that leads to an altered context in which to make diverse and complex interpretations. The twist also has to do with a very deliberate presentation of this story. Embedded within this account of Wesley's day is a perspective that resonates among the narratives of ail the participants in this study, namely the idea that "I'm not much different." To give an example of some of the ways that the participants in this study share this viewpoint, I include a few excerpts to represent their voices: Yeah, I'm in a chair, but I'm not much different; I just can't walk. And that is when I started getting back into getting a job, going to school, urn... thinking positive and saying it's not so bad. I can do it. I can do more than mos Jole bodied, you know. More than people with their mil physical ability, you know, I can do pretty much what they can do and a lot of times more, or better, or - hard to believe, you know, but I would be able to with my disability. " Tetraplegia refers to loss of voluntary movement (paralysis) of arms, legs, and trunk, whereas paraplegia refers to paralysis of the lower trunk and legs (Cole, 2004). Tetraplegia and quadriplegia are synonymous terms used to describe a type of paralysis usually stemming from a spinal cord injury around the cervical region. Paraplegia results from a spinal cord injury around the thoracic or lumbar region. It's not so much being in the chair, like people always telling me, "Oh, it must be hard for you." I'm like, "No!" I'm sure me and you have the same tasks everyday.. .but you're standing and I'm not. We still have the same things to deal with everyday. I don't know, it seems pretty simple to me. It's just an environment where I'm an equal. It's just like me when I get in my car and drive on the freeway - I'm an equal. Get me on a beach in sand - I've got a big disability... These excerpts reflect in different ways and with a different emphasis that "I'm not much different," "I can do...what they [nondisabled] can do," "we still have the same things to deal with everyday," and "it's just an environment where I'm an equal." Even though all the participants emphasize "ability," each person also acknowledges a broader context of "disability" by the comparisons made between themselves and the "nondisabled 2 ." So much hangs on a socially constructed interpretation of disability, but the gap between what is being constructed and what is being interpreted is far-reaching. I do not interpret the participants in this study as wanting to convey a notion of "no different," in the sense of having no unique qualities as individuals. On the contrary, each of the participant's stories (Chapters 4 - 7) will bring forth much individuality and distinctiveness in perspectives. The theme, "not much different" indicates broader similarities to those who are : Participants in this study tended to use the terms "disabled'' and "nondisabled" to refer to themselves and others. As a general rule of political correctness and in order to show that each person is an individual first and that the neurological impairment is secondary, in this dissertation I generally use the phrase, "individuals living with... 'a spinal cord injury' or 'a disability."' However, the term, "nondisabled" is widely used in disability literature instead of "without a disability," with the intention to place "disability" at the center rather than periphery. 6 nondisabled, while retaining unique identities as someone who is "still me 3 ," a person who has a basic need to create and express him/herself through occupations, even if that requires facing different challenges. My intent in this section is to juxtapose a perspective held by participants in this study, against a more commonly held misconception about disability circulating within the broader society in which the participants live. In the process of creating and forming their identities, the participants in this study com'' to ff*e! a sense of being "no different," despite what a more socially dominant perspective might suggest. Within this tension - among people and within people - there is a certain complexity that also involves the social milieu, which begets myriad effects on the processes of constructing and expressing identities within the context of daily life. Individual identity has, in fact, a characteristic ambivalence. On the one hand, in order to be accepted by others, one must be similar to them to a certain extent. On the other hand, in order to avoid anonymity and taken-for-grantedness, one must be different from others to a certain extent. (Crespi, 1989, p. 101) Through an exploration of what it is like to live with a spinal cord injury - what it is like to construct identities amidst socially dominant and personaJy felt discourses often in direct conflict -1 attempt to bring forth an interpretation illustrating the complexity of this process, grounded in occupational science and the voices of the participants in this study. Implicit in Wesley's story (and in the stories of other participants in this study) is the notion that even when life takes a dramatic turn, it is J Borrowing from the title and storv of Christopher Reeves well-known book, "Still Me" (Reeve, 1998). possible to still be Wesley as defined through his own occupations. In short, I am concerned with the processes with which individuals living with spinal cord injury construct and shape their identities through occupations within the context of their everyday lives. In particular, I am interested in the actual doing and experiences of these occupations as part of this process. Background To The Problem Conservatively, approximately 14 new spinal cord injuries per million people are reported each year (National Spinal Cord Injury Statistics Center, 2004). Some reports show that the rate of new spinal cord injuries has remained stable over the past decade, while others show an increase (Human Development Report 2003; ICCP, 2004). While a traumatic spinal cord injury (SCI) used to be equated with reduced life expectancy, today researchers and clinicians generally agree that there are roughly no differences in longevity for individuals who sustain a spinal cord injury as compared to that person if he/she had not sustained an injury (Imai, Kadovvaki, & Aizawa, 2004; Kemp & Thompson, 2002). Therefore, there is an increasingly large number of individuals with spinal cord injury returning to, residing in, and rebuilding their lives within communities around the world. Because individuals living with spinal cord injury constitute a substantial minority group in the United States, it is imperative that research efforts examine ways in which these individuals reconstruct their lives, as well as explore their experiences through this process. 8 A survey of individuals living with disabilities showed that 66 percent of respondents reported that their quality of life had improved since the implementation of the Americans with Disabilities Act (ADA) in 1990 (Longmore, 2003). The question is why, despite the reported improvements in subjective quality of life related to better accessibility and opportunities, there remains a reported high level of marginalization among individuals living with disabilities. Despite what might initially have seemed like significant improvements, Longmore (2003) writes that Americans with disabilities "tend to be socially isolated" (p. 20), and "despite some improvements in accessibility, people with disabilities are still far less likely than nondisabled Americans to go to restaurants, movies, concerts, sporting events, churches, or stores" (p. 20). Moreover, individuals with disabilities are more likely to live alone and less likely to enter into long-term romantic partnerships (Longmore, 2003). The rate of suicide among individuals living with spinal cord injury has been reported to be as high as "roughly five times that of the general matched population, with most of these in the first five years after the injury" (Cole, 2004, p. 101). This bifurcated depiction of disability supports a notion that ideologies and perspectives relating to disability are complex matters, often disguised under unilaterally self- serving political rhetoric, superficial understandings of complicated issues within the public domain, and a lack of analyses grounded in the experiences of individuals living with disabilities. An increase in research pertaining to spinal cord injury in particular was spurred by the United Nations' declaration of the "UN Decade of Disabled People" 9 from 1983-1992 ( Cole, 2004). Naturally, much of the research since the 1980s was biomedical in nature (Ditunno & Formal, 1994; Fuhrer, Garber, Rintala, Clearman. & Hart, 1993; Pires & Adkins, 1996; Samuelsson, Larsson, Thyberg, & Tropp, 1996; Sapountzi-Krepia et al., 1998). Some individuals with spinal cord injury have written autobiographies (Callahan, 1989; Hockenberry, 1995; Kumin, 2000; Reeve, 1998, 2002; Thompson, 2001; Wellman & Flinn, 1992; Williams, 1997), anthologies of disability experiences have been produced (Fries, 1997; Hoogewind, 1998: Karp & Klein, 2004), and academics have researched disability experiences (Bagatell, 2002; Becker, 1997; Cole, 2004; Frank, 2000). However, very few projects have focused on the narrative experiences of people living with spinal cord injury (Cole, 2004). A basic assumption of occupational science is that engagement in occupations, or the "culturally and personally meaningful activities in which individuals partake on a daily basis or at various times throughout their lives" (Jackson, 1996, p. 341), is related to people's development and expression of identities (Bagatell, 2002: Christiansen, 2004; Clark, 1993; Jackson. 1995: Wilcock, 1998; Zemke & Clark, 1996). In other words, people have a propensity to shape their identities through what they do, what they have done in the past, and what they foresee doing in the future (Wilcock, 1998; Zemke & Clark, 1996). Hasselkus (2002) has reflected upon this notion from a perspective of both personal experience and scholarship: "'One way that I know my self is through occupation and one way that my self expresses itself in the world is through occupation" (p. 17). 10 Orchestrating these occupations is complex, involving multiple levels of engagement by an individual with his or her social, physical, mental, and spiritual environment (Primeau, Clark, & Pierce, 1989; Yerxa et al., 1989). It has been suggested that when faced with a sudden disability, people reinterpret a sense of who they are and reconstruct their identities through what they do (Fitzgerald & Paterson, 1995). Furthermore. Zemke and Clark (1996) have asserted: People are shaped by what they have done, by their daily patterns of occupation. Should disease or disability strike, individuals will be able to reconstruct meaningful lives - drawing on threads of their past selves to create a sense of continuity in their new situation. One way they do this is through commitment to action - to occupation, (p. vii) In this way, constructing and expressing identities within the context of daily life is a complex process; and adding a dimension of disability to the renegotiation of identities increasingly complicates the process. In understanding this process, it is important not only to generate knowledge about "the form, function, and meaning of human occupation' (Zemke & Clark, 1996, p. vii), but also to attend to the social milieu and social tensions in which people construct and express identities. Jackson (1998c) writes: The study of human occupation must consider the dynamic relationship between the choices people make for action and the various environmental forces that facilitate or impinge upon those choices. Simultaneously, the capacity of humans to transform their environments to meet their needs through and for engagement in occupation is central to this science, (p. 57) 11 In other words, people's choices for occupational involvement are influenced by social contexts, and moreover, the occupations as such are also imbued with social ideologies that affect choices and the meaning of carrying out particular occupations. This dynamic relationship between a more inherently individual agency and environmentally constraining or enabling forces on occupation, is of critical concern in exploring the experiential processes in which people create a sense of who they are and how others perceive them. In particular, the enactment of occupations in and of itself, regardless of personal meaning, is an outward expression of identities that others interpret based on social discourses and ideologies attached to the occupations (Taylor, 2003). An understanding of this dynamic interplay between the social and the individual, likely influences people's choices in their repertoire of occupations. I draw here from what I consider a powerfully eloquent story by a young Japanese woman who writes about her experience with spinal cord injury. She sheds light on the complexity of reconstructing a life with spinal cord injury in the context of multiple social and inner tensions. As a child, Matheson (2004) asked her teacher about a neighborhood boy with a visible disability. She had wondered why he was "different." The teacher had responded with an uncomfortable silence, leading the ycung Matheson to feel that this was something unmentionable. She writes, "I just put it deep in my heart, sealing it with the words, 'too taboo to ask!'"(Matheson, 2004, p. 15). Matheson proceeds to write of several such encounters throughout her youth, leading to a strangely misguided perception about disability. Several years later, after being involved in an accident leading to a spinal cord injury. Matheson (2004) recalls awaking from a coma, thinking to herself: "I didn't want to endure people calling me 'Sho-ga-i-sha,' an unflattering Japanese word for a disabled person that made me imagine someone who is pitiful, sad, and dependent" (pp. 14- 15). As Matheson (2004) pondered her future, now disrupted by a negligent truck driver who fell asleep at the wheel, her mind was immediately filled with old voices representing stigmatizing views of people with disabilities. These voices filled her with a sense of doubt, shame, and hopelessness. It was amid these figuratively paralyzing perceptions held by the outside world that Matheson reconstructed her identities and her life. As she lay still strapped to a bed, "'face swollen, missing front teeth, immobilized by skull traction, and attached to a respirator," (p. 16) her doctor asked her if she wanted to go for a swim. She writes, "I would do anything to go swimming! But I couldn't say yes instantly" (Matheson, 2004, p. 16). Matheson reflected that what changed something inside her was the doctor's next comment: "How can you expect others to see your potential if you don't see it in yourself?" (p. 16). For Matheson, these words were transformational in getting her to imagine new- possibilities, a revival of identities, and a life of occupations. In her particular case, the process of rebuilding identities around work, athletics, and romance eventually led to a job in journalism, three gold medals in the Nagano Paralympic Games, and a committed long-term relationship. Matheson's case embodies the problem and the endeavor of this dissertation. The onset of disability is sometimes unexpected, and coming to terms with a sudden 13 spinal cord injury is a complex process requiring a critical look at numerous factors. Social milieu, social discourses and ideologies, processes of negotiating the debilitating voices of others, and relearning to express oneself through a repertoire of occupations are all relevant to this undertaking. It has been purported that individuals living with spinal cord injury can regain a sense of control of their lives as well as achieve personal satisfaction through a repertoire of occupations (Cole, 2004; Green, Pratt, & Gregsby, 1984; Yerxa & Baum, 1986), but through what processes and under what environmental circumstances will be the topic of interest in this dissertation. Purpose Of Study In this study, I explore the experiences of four individuals living with spinal cord injury, and how these individuals negotiate and sculpt their identities through occupations within the context of their everyday lives. Through my irteractions, reflections, and time shared with these participants over the course of 18 months, I began to address questions such as: How do people construct, recreate, and express identities through occupations following a spinal cord injury? In what ways do these participants experience the processes of sculpting their identities within diverse and socially constructed contexts? How in particular do the individuals in this study experience their self-identities as "not much different" through both ordinary and not-so-ordinary occupations? What do these participants' narratives contribute to an ongoing discourse about occupation and identity? In short, this dissertation is about living with a disability - specifically a spinal cord injury - in the 21 st century and expressing identities in complex social worlds. Significance Of Study This study contributes to the gr owing knowledge base of occupational science. Moreover, honoring the vision of the founders of occupational science, this project also contributes to a better understanding of occupation and its implications for the practice profession of occupational therapy. I briefly delineate my goal here but will elaborate on these contributions in the final chapter of this dissertation. Relevance To Occupational Science The potency and value of ordinary occupations have been celebrated in occupational science since its inception (Clark, 1997; Yerxa et al., 1989; Zemke & Clark, 1996). This dissertation honors the early visions asserted by the founders of occupational science more than a decade ago. Furthermore, this research honors people as havin_ an innate need for occupation, an ability to adapt through occupation, and the capacity to choose and orchestrate occupations within complex environments (Yerxa, 1998; Yerxa et al., 1989; Zemke & Clark, 1996). Specifically, I explore the construction and expression of identities within the context of daily life among individuals living with spinal cord injury. The analysis presented in this dissertation is not based on imaginary or artificial settings, nor do I draw on simulated activities; rather. 1 present an analysis grounded in the experiences of the 15 participants as they reflect upon and engage in ordinary as well as momentous occupations within natural, everyday settings. In particular, I will emphasize the social ideologies and discourses that permeate the social contexts in which occupations are carried out, and how these socially charged ideas influence the choices and orchestration of occupations. Through the collective stories of the four participants in this study, I will also emphasize the power of ordinary occupations and how these impact the construction of identities. I also hope that this research will sufficiently illustrate the richness of individual perspectives coupled with a theoretical analysis, in order to contribute to a more inclusive view of individuals living with disabilities. Relevance To Occupational Therapy In his book Still Lives: Narratives of Spinal Cord Injury, Cole (2004), a neurophysiologist and physician, draws upon in-depth interviews to contribute to an understanding of what it is like to live with a spinal cord injury. One participant in his study reflected upon his encounter with rehabilitation: I did not know what OTs do. Now I do; they get you to a point of living at home as independently as you can. Physiotherapists may do functional hand movement; they get your hands and muscles moving, but an OT will show you how to use the hands, getting joints moving and bulk up. With no feeling in the hands, a physiotherapist will not teach you how lo use a cup. but an OT will, and will show you how to dress. (p. 92) As a physician who used to specialize in pain management among people with various neurological conditions. Cole (2004) initially had little understanding of the 16 various contributions that other health professionals played in the lives of people living with spinal cord injury. Throughout his book, Cole (2004) reflects upon his own journey of learning. He wites of the occupational therapist's work in applying medical rehabilitation beyond biomechanics: Occupational therapists have to take this and apply it to the real world. They trear 4 f he much more demanding line between showing people the limits of what they will be able to do in a world which, for the most part, disregards disability, and encouraging, enabling, and empowering people to manage their environments to their best advantage. (Cole, 2004, p. 92) In brief, my point here is two-fold. Occupational therapists have an important contribution to make in the lives of people relearning how to live with a disability, both early on and throughout the continuum of care after rehabilitation (Borell, Lilja, Andersson, & Sadlo, 2000; Clark et al., 2001; Jackson, 1996, 1998a; Tham, Borell, & Gustavsson, 1999). In fact, occupational therapists might even choose to work with individuals who have spinal cord injury beyond the health care arena and in the community where they reside as healthy adults, shifting the focus from health care to wellness and quality of life through occupations. By understanding a breadth of experiences among individuals living with spinal cord injury in various settings, occupational therapists must iearn to contextualize occupations in a way that taps the inner potential in people throughout this continuum, from acute medical care to rehabilitation to community living. Organization Of Dissertation Thus far, I have implied that occupation is central to peoples' construction and expression of identities. I have begun to frame the overarching problem of how individuals living with spinal cord injury experience this identity-making process. I have relied on stories and cases of people living with spinal cord injury to frame the complexity of the problem that is faced when reconstructing lives and identities after a sudden onset of disabilit y. I have briefly drawn on concepts from occupational science and disability studies to delineate the background, purpose, and significance of this study. In Chapter 2,1 review the relevant literature more comprehensively, in order to lay a foundation for the analysis in this dissertation. 1 will discuss more concretely what is meant by "occupation" and the ways in which identities have been explc-ed through occupations in the literature. Then I will discuss the construction of disability, drawing first upon disability literature to illustrate certain problematic perspectives, followed by a perspective that frames disability in a more contemporary light. A more inclusive view of disability places more emphasis on the social environment as responsible for disabling people, rather than seeing disability as a primarily internal problem within individual people. Next I will ' .plore the social construction of identities from a multi-disciplinary perspective, but specifically highlighting a theory from which I draw most heavily throughout this dissertation. In fact, it might be said that a large portion of the analysis in this dissertation is an ongoing dialogue with Holland et al.'s (1998) practice theory' of self and identity. Finally, I will lay the foundation for understanding potentiality as a meaningful way to express the powerful and embedded aspects of occupation that arise out of actual "doing" and "experience." Overall, this literature review lays the foundation for understanding processes in which people living with spinal cord injury go about constructing and expressing their identities within the context of daily life. In Chapter 3,1 delineate the research method used in the planning, implementation, and analysis of this study. This is a qualitative study borrowing heavily on ethnographic techniques. I engaged in interviews, participant observation, and "hanging out" with four participants over the course of 18 months. In keeping with much of the ethnographically informed qualitative research in occupational science and occupational therapy, this study was informed by a narrative inquiry in analyzing the data. In Chapters 4 - 7,1 highlight different aspects of constructing and expressing identities. It must be understood that creating and expressing a sense of identities can take many forms and consist of myriad processes. The stories in Chapters 4-7 honor the lives of four different individuals, all living with spinal cord injury, but all leading different lives. Although I highlight a different aspect of the construction of identities in each of the four stories, all the participant stories have remnants of processes from other stories. In this way, the four stories build upon one another. The first two stories develop the concept of social context including occupations, 19 people, environments, objects, and socially circulated discourses. The second of the two stories elaborates on social power and the workings of such forces when constructing identities. The third story emphasizes and explores the process of internalizing social discourses and the impact that this has on negotiating identities. In the last story, I bring together multiple aspects from prior chapters and elaborate on the power of potentiality in occupation. In the final chapter, I will summarize the findings of this study and draw out the main concepts for occupational science and occupational therapy. 20 CHAPTER 2 Introduction In this chapter, I provide a framework that will serve as a foundation for the subsequent analyses in this dissertation. In laying this foundation, I draw from a number of sources to address particular issues such as: in what ways do people living with disability come to be seen by others and themselves, in what ways do people go about creating identities, and, based on the literature, what are the most critical issues for consideration? I draw on literature from many disciplines, including anthropology, disability studies, psychology, philosophy, sociology, and occupational science, because, as Yerxa et al. (1989) stated, "No science existing today can, of itself, explain occupation" (p. 5). My intention here is to focus specifically on establishing a foundation upon which to consider more fully a series of themes and analyses brought forth through the storied accounts of four partic ipants in Chapters 4 - 7 of this dissertation. By the end of this chapter, I make a claim grounded in a review of relevant literature that identities are created and expressed in part through engagement in occupations. Furthermore, I establish the relevance of situating these identities and occupations within largely social contexts. In the subsequent sections of this chapter, I first address the concept of occupation, then the concept of disability. I address how disability has been defined in the literature and in particular explore commonly held perspectives regarding disability the United States. Next, I briefly discuss how the concept of identities is 21 viewed within this dissertation and my reasoning for entering into dialogue with a practice theory of self and identity presented by Dorothy Holland, William Lachicotte, Debra Skinner, and Carole Cain in their 1998 book, Identity and Agency in Cultural Worlds. I also illustrate the possible congruence between perspectives put forth in their practice theory and occupational science. Lastly in this chapter, I lay a foundation for exploring potentiality as a powerful element in understanding the process of creating identities through occupations. Conceptualizing Occupation My interest in the experiences of individuals living with spinal cord injury stems from wanting to learn about the rediscovery, reconstruction, and shaping of identities within different contexts after a major disruption in a repertoire of daily occupations. I began this study with the belief that people's identities were closely linked to their occupations, or, as Yerxa (2002) has stated, "People literally create who they are through occupations, which connect them to their world and culture" (p. 105). Furthermore, I assumed that what people do largely influences how they perceive themselves, are perceived by others, and perceive others to perceive them. As I lay the foundation for the analyses of this dissertation, I want to make clear what I mean by occupation, as well as identities in relation to occupations. First, occupation, as 1 use the term here, is conceptually what is most central to the scholarship of occupational science and is understood as the "culturally and personally meaningful activities in which individuals partake on a daily basis or at 22 various times throughout their lives" (Jackson, 1996, p. 341). The term "occupation" comes from the Latin root "occupatio," meaning to conquer or to seize, and has immediate links to action or praxis (Christiansen & Townsend, 2004; Engelhardt, 1977; Yerxa et al., 1989). Occupation within the context of this dissertation is rooted in the histories and traditions of occupational therapy and occupational science, and therefore not merely reduced to its possible definition denoting paid employment. Drawing from a line of scholarship on occupation (Clark et al., 1991; Jackson, 1995, 1998c: Wilcock, 1998; Yerxa et al., 1989; Zemke & Clark, 1996), occupations are corporeal, or embodied, because, without our bodies 4 , it would be difficult to engage in what occupies us daily and during the course of our lives. Occupations are social because our actions - whether mental or physical - are formed and often expressed in a social climate including others. Finally, occupations are visceral in that within a constant flow of activity - biological, physical, social, environmental, emotional, and spiritual - people experience a power within themselves through their occupations. Proponents of occupational science, value the notion that it is human nature to be moved to perpetuate these encounters, practices, and actions to which I refer. Second, the concept of identity has been of interest to social scientists from a wide array of disciplines. Since much has been written about identity within occupational science - and it is conceptually too much to reduce into a singular idea - I outline some defining characteristics that inform the analysis in this dissertation. Identity or identities have generally been interpreted as: (1) plural rather than 4 1 use the term body to mean both the physical and the mental. 23 singular (Bagatell, 2002; Christiansen, 1999; Clark, 1993; Jackson, 1995; Polkinghorne, 1988), (2) personally as well as socially constructed and reconstructed throughout life, rather than transpiring through pre-determined or sequential life stages (Bagatell, 2002; Christiansen, 1999; Clark, 1993; Holland et al., 1998; Jackson, 1995, 1996; Polkinghorne, 1988), (3) formed and expressed through narrative and occupation (Bagatell, 2002; Clark, Carlson, & Polkinghorne, 1997; Jackson, 1995; Mattingly, 1998; Mattingly & Gillette, 1991; Polkinghorne, 1988), and (4) subject to environmental influences including cultural, historical, political, and social tensions (Bagatell, 2002; Holland et al., 1998; Jackson, 1995; Kondo, 1990). Identities In Occupational Science The interest in how people go about constructing their identities, expressing themselves, and doing so in the face of disability is not new to occupational science. In fact, leading scholars in the field of occupational science have tackled this subject matter for several years, drawing from a wide array of theoretical tools and research techniques. For example, Wilcock (1998) asserts that, '"the occupational background, present, or future of people is a major reflection of every individual, that what they do, in some ways, is what or who they are" (p. 22). Occupations in this context are mechanisms by which people socially and biologically negotiate themselves within their worlds; occupations provide a vehicle for agency within these worlds. Alternatively put, people develop a sense of who they are and what they are through what they do (Engelhardt, 1977). Despite external pressures, under 24 most circumstances within communities around the United States, people have the ability to make choices about what they do and about how they see themselves within the context of their life. This is not to imply that socio-political influences are not the source of many conflicts surrounding identity construction, but rather that people are not doomed to some sort of docile identities (Foucault, 1979) defined only by social structures and tensions. Clark, Ennevor. and Richardson (1996) assert that people shape their identities through their daily practices, habits, and activities. Moreover, Clark et al. (1996) posit that people encounter many obstacles in the course of constructing themselves as occupational beings. For example, Clark (1993) describes a successful woman, Penny, whose life is disrupted by a stroke. Through her therapeutic journey with Clark, Penny finds ways to reconstructing her identities through connecting past and present in order to move forward and express a future image of what it means to be "Penny." For instance, Penny decides that she will purchase season tickets to the opera as a way of re-establishing her social life. The opera is one way that Penny gives continuity to her sense of identities. However, identities are not only about connecting with the past; novel occupations are as much part of constructing identities as are older and more familiar ones. In another account from Penny's story, she illustrates how independently riding the bus for the first time adds a sense of "risky" and "hot shot" (Clark et al., 1996, p. 389) to her repertoire of identities. It becomes quickly apparent that, within the context of a person's life the complex 25 interaction of disability and occupation may have myriad effects on the creation and expression of identities. In another case, Jackson (1998a) describes Sandy, a woman who survived a "double stroke" (p. 467). Before her stroke, Sandy juggled many occupations including mothering a teenage son, entertaining friends at home, and negotiating a stressful corporate job with a newfound career as an amateur bowler. Sandy was frustrated by how the residual effects of the stroke limited her ability to participate in meaningful occupations. The analytic point that I want to focus on here has to do with a community outing where Sandy and her occupational therapist visited a mall and ended up searching for the "perfect tablecloth" (p. 468). Sandy's story illustrates how the co-constructed occupation of shopping contributed to Sandy's experiences as a multidimensional person (Jackson, 1995), not limited to facets of disability and therapy, but also integrating identities along a temporal continuum connected to shopping, mothering, and being lesbian. What is of immediate interest to this dissertation is the way that spoken and enacted narratives can explicate how "occupational stories are embedded within a social and personal context" (p. 469), how the occupation of looking for the perfect tablecloth embodies "many themes from her previous and possible future experiences" (p. 470), and how occupation allows for the negotiation of "disability into her fabric of identity" (p. 471). It is this complexity of how identities are created and expressed through occupations situated amidst social worlds that lies at the center of the issues addressed in this dissertation. 26 The embeddedness of identities lived through occupations in everyday life is what is most unique about exploring this topic of identities through an occupational science lens. Hasselkus (2002) writes: Occupation, in addition to the end products that it yields in the way of completed projects and accomplishments, is also comprised of experience. The experiential aspects of occupation are often ignored and devalued in our society; the finished product is what we point to with pride. And yet, to me, the experience of the occupation may very well be the most important part. (p. 132) Experiences specifically relating to ordinary occupations in various contexts of daily life, whether it be riding the bus or buying a tablecloth, shed light on the power inherent in the processes of experiencing occupations. Section Summary In summary, I suggest that it is the actual experience and doing of occupations that highlights what is most essential in the prospective identity creating process. Identities situated in socially constructed contexts are often discussed in terms of cultures, societies, relationships, and mental properties, but not in terms of occupations. Occupational science brings occupation to the forefront and illuminates its significance in the discourse on disability and identity. I will further this line of research by adding perspectives resonating among a group of individuals living with spinal cord injury. 27 Social Construction Of Disability When deliberating about the concept of disability, I found that several issues required theoretical attention. In order to emphasize the social complexities surrounding disability discourses permeating the environments where the participants in this study spent their daily lives, it is imperative to consider several perspectives. Hahtn (1987) writes, "A comprehensive understanding of disability requires an examination of the architectural, institutional, and attitudinal environment encountered by disabled persons" (p. 182). Defining disability per se is generally of little importance for the purposes of this study, other than to acknowledge that spinal cord injury is typically considered a type of disability. On the other hand, considering critical and theoretical perspectives evolving within the disability literature is relevant in understanding the social promulgation of discourses pertaining to disability. Furthermore, I argue that the discourses and perspectives that are most pervasive in the worlds where the participants in this study live not only shape the social landscape of the environment, but also become internalized as discourses to be contended with and rejected, or sometimes embraced. Because this dissertation is about ways in which individuals with spinal cord injury construct and express identities through occupations, these social as well as individual perspectives are foundational. For people living with spinal cord injury and other visible disabilities, the experience and meaning of disability is reportedly variable. Among people who 28 have never had first-hand experiences with disability, their conceptions are largely based on information filtered through a variety of external sources. Thus, there are many vantage points from which to view disability. For instance, the most commonplace associations connected with the term "disability" are as a way to collectively classify medical conditions, to describe legal status, or even as a way to conceptualize discourses on a more broad societal level. Before exploring various perspectives regarding disability, I review a definitional aspect. According to Merriam-Webster s Collegiate Dictionary (2004), disability refers to a condition whereby the "disabled" is unable to "pursue an occupation because of physical or mental impairment." It can also mean a "lack of legal qualification to do something," or "disqualification, restriction, or disadvantage." On a more technical level, according to the International Classification of Impairments, Disabilities, and Handicaps, disability is defined within the context of three broad but categorically relevant dimensions of disablement. These dimensions are: (1) impairment, meaning any abnormality of physiological or anatomical structure or function; (2) disability, meaning any limitation in the ability to perform any activity considered normal for a human being or required for some recognized social role or occupation; and (3) handicap, meaning any resulting disadvantage for an individual that limits the fulfillment of a normal role or occupation (Bickenbach, 1992). To be clear, the term occupation as is used in these definitions is likely intended to refer to paid employment or vocation, rather than the more inclusive use that I have delineated earlier. 29 In considering the participants in this study, these definitions are not only unsatisfactory in general, but provide little basis for making a specific claim that individuals with spinal cord injury even qualify as "disabled." For instance, would Wesley (described at the beginning of Chapter 1) qualify as being "disabled?" Certainly he would seem able to "perform any activity considered normal for a human being or required for some recognized social role or occupation." Consider for a moment another scenario: Rosalyn is a mother, a college student, and is gainfully employed. Is she disabled? Based solely on this information and given the aforementioned definitions, we would be inclined to answer "no." What if I add that Rosalyn also has a spinal cord injury? Going by the previous definition from above, one would reject the classification of "disabled" because the woman in this case is pursuing work, school, and appears to be "fulfilling a normal occupation." It is likely that paralysi would constitute "impairment" and "handicap," but, according to the given definitions, not "disability.' And yet, from a policy perspective, a medical perspective, and from just a common everyday perspective, many people would find both Wesley and Rosalyn to have a disability, regardless of employment, mothering, academics endeavors, leisure pursuits, or even how the individual him/herself might want to be seen. Therefore, disability is not only a matter of tentative medical, legal, or work-related characteristics, but is also a matter of individual and societal perceptions. In considering these perceptions, disability is at least in part about how the individual with a disability sees him/herself, sees others, and is seen by others. 30 Although I challenge the usefulness of current commonplace definitions pertaining to disability in terms of exploring the construction and expression of identities through occupations, I do not reject the benefit of having definitions for the purposes of political clarity. For instance, in the case of social and health policies, it is clearly important to elucidate what constitutes disability so that resources can be allocated appropriately (Bickenbach, 1992), and so that individual rights can be protected. Thus, I concur that, for the purposes of political capital and influence, "disability" is theoretically a productive rhetoric through which to loosen old thinking as well as move curren f and future institutions to adopt more inclusive policies for individuals living with disability. Moreover, disability advocates are convincing in putting forth an argument that "disability" as such is merely a product of socially constructed physical and attitudinal barriers for which we as a society are to be partially held responsible (Gartner & Joe, 1987; Linton, 1998; Longmore, 2003; White, 1999). As I mentioned earlier however, here I am interested in the experiences of individuals living with spinal cord injury in the context of their everyday life. To this end, I want to address perspectives that make up the social landscape of the worlds where these participants carry out their lives. The participants in this study shared many experiences and reflections with me, often against a backdrop of socially pre valent misconceptions regarding disability. Interestingly, the participants in this study seldom perceived their disabilities as a central aspect of their identities, even though they frequently needed to negotiate their identities amidst the "disabilities" projected onto them by others. These 31 experiences were undeniably lived through occupations in worlds where strong undercurrents of multiple discourses were at play. Reviewing Perspectives Of Disability The analyses in subsequent chapters reveal that participants in this study emphasized b<?ing "not much different," and yet their everyday lives were also infused with discourses and images of disability against which they constructed and expressed identities through occupations. In this section, I focus on the socially constructed images and discourses pertaining to disabilities, perpetuated within the milieus where participants in this study carry out their daily lives. At present, a myriad of disability perspectives dwell in the cacophony of words populating various social milieus. These views are perpetuated through images in the media, health care system, employment venues, and throughout other aspects of a diverse social terrain (Gartner and Joe, 1987; Linton, 1998). Longmore (1987) observes that there are a plentitude of characters in media that present with a variety of disabilities, and yet the prevalence of disability tends to be an overlooked aspect of social life. In the following subsections of this chapter, I synthesize some of these beliefs and positions echoed in the collective voices of various parties. The perspectives I assemble here, either inadvertently or advertently impacted the construction and expression of identities among the participants in this study. I will start with what I will refer to as a normative perspective on disability, and then move through biomedical, economic, and social perspectives. 32 Normative Perspectives I begin with a normative perspective because its conceptual core permeates many of the subsequent theoretical positions. A large number of individuals living with disabilities face barriers to a fair share of occupational opportunities, generally due to a societal misperception of "disability" as "abnormal" and as something inherent within a person (Funk, 1988; Minow, 1990; Scotch, 1984; White, 1999). The tendency toward "normal" is the defining characteristic of a normative perspective. In this context, "normar means typical, average, or generally recognized as characteristic of the majority (Davis, 1995). For example, if 95 percent of women in Los Angeles measure 165 centimeters in height at the age of 18, then this can be considered the benchmark for the "normal" height of an 18-year-old woman in this particular cohort and community. The 5 percent of women who do not fall within this range would accordingly have "abnormal" heights. Alternatively, taking the sum of the height of all 18 year-olds in Los Angeles and dividing the total by the number of individuals measured can produce an average. This type of average is often equated with "norm." The further from the average, the further from "normal." In this way, "normal" can be understood as a simple majority or as a statistical average. Both methods produce a benchmark by which people are compared and labeled as "normal" or "abnormal." It is by default that the term "abnormal" becomes the antonym of "normal" (Linton, 1998). One problem with deferring to such terms as "normal" and abnormal" is that these terms are value-laden. On a continuum, this situates 33 "normal" as good and "abnormal" as bad. In this sense, people with disabilities are compared and placed into an artificial category of "abnormal" along a continuum where the variables are inconsistent. Linton writes: These dynamics often emerge in discussions about disabled people when comparisons are made, for instance, between "the normal" and the "the hearing impaired," or "the normal children" and "the handicapped children." The first example contrasts two groups of people; one defined by an abstract and evaluative term (the normal), the other by a more specific, concrete, and nonevaluative term (the hearing impaired) (Linton, 1998, p. 23). In this context, "normal" is artificially inscribed with a generalized and diffuse sense of meaning that is at best arbitrary, while "hearing impaired" takes on a more specific meaning with room for less ambiguity as to what characteristic is being qualified. Another problematic aspect of the normative perspective is that individuals are placed along a continuum representing degrees of normality, allowing for little heterogeneity or diversity. In the context of this perspective and in relation to disability, there is littie room for an understanding of spinal cord injury as a certain physical difference instead of the more overarching and negative perception of "abnormality." Because the underlying presumption in a normative perspective is that "normal" is desirable, this places expectations on people who fall outside of the "norm" to seek ways of becoming normal, and ultimately creates an atmosphere of intolerance. 34 Biomedical And Moral Perspectives The hallmark of the biomedical perspective is that disability is a state of mind and/or body categorized by some form of deficiency, dysfunction, or abnormality that is inherently a problem within the individual (Bickenbach, 1992; Higgins, 1992). Because proponents of the biomedical perspective do not treat social issues, Bickenbach (1992) emphasizes the underlying assumption within this perspective that "abnormality" is an individual rather than a societal issue, Although the biomedical perspective places a normative value on the mind and body, deeming those who are different as inherently deficient, this perspective does not imply moral fault 2 on the part of the subject. In its most fundamental form, then, the biomedical perspective emphasizes intra-personal deficiencies and illustrates rejection of the possibility that the general environment or attitudes of the "nondisabled" community might partially be responsible for disabling circumstances (Longmore, 2003). Implicit in the previously discussed normative perspective and more explicitly reflected in the biomedical perspective here is the belief that the expressions of "abnormality" should be corrected (Bickenbach, 1992). By virtue of powerfully intellectual discourses, the biomedical perspective leads people to believe that there is something at risk, namely that disability represents continual medical problems and a persistent need for medical services. The possible service recipient under the auspices of the biomedical perspective is viewed as being in need of 3 Earlier perspectives rooted in religion implied that disability was a consequence of moral wrongdoing (Bickenbach. 1992). It was believed that people with disabilities were being punished or paying retribution for their sins. Thus, people's moral shortcomings were being manifested in their physical being. treatment rendered by a professional. People are effectively convinced of their "abnormality" and need for medical services through the use of previously discussed numerical averages and mentally stored images of social norms and ideals. The legitimacy of the biomedical model largely depends on the notion that health professionals have the ability to fix, heal, and rehabilitate, and that the right decision is always to take corrective measures to reduce any degree of "abnormality." In this sense, Bickenbach (1992) considers the theoretical core of a biomedical perspective to be that of "medical realism," meaning that medical findings, reasons, and explanations are reified as truths that are independent of social context or culture. The process of reifying medical findings as absolute truths serves perpetually to legitimize the medical system, its agents, and the services rendered within. To this effect, Mitchell and Snyder (1997) write, "We rarely consider that the continual circulation of professionally sponsored stories about disabled people's limitations, dependencies, and abnormalities proves necessary to the continuing existence of these professional fields of study" (p. 1). The biomedical perspective inadvertently or intentionally labels the unique circumstances facing people living with disabilities as "abnormal," and as problems that exist within the person and not in society. Although the biomedical perspective is not being presented under a favorable light here, it is important to note that biomedical perspectives have been critical in advancing medical technologies and at times providing a strong and in^uential voice of support for the disability community in mobilizing policy makers (Bickenbach, 36 1992; Linton, 1998). Moreover, the perspective put forth here is not intended to define the perspectives of all health care providers but to synthesize an ideology pervasive within the medical establishment and widely referred to in the disability literature. Economic Perspectives Under the economic perspective, the focal concern has to do with how a person's disability affects ability to participate and be productive in work. This relates to the economic consequences on an individual level as well as on an institutional and national level. Bridging the conceptual frameworks of medical and economic perspectives, studies relating to disability experiences have shown that gainful employment often contributes to a perception of heightened quality of life (Bergsten, Asaba, & Bergstrom, 1977). Although not without controversy, the economic perspective is considered by many to be the first effort to recognize disability as a social problem rather than something solely individual or medical in nature. With that said, the economic perspective is based on the premise that disability can be viewed in terms of financial costs to society. The concept of "cost" in this case also includes medical costs as well as societal costs in the form of loss of work and loss of taxation monies. Although the economic perspective does not automatically frame "cost" as a problem, it is most often laced with a nuance of disability being seen as an impediment to economic growth. The economic perspective on disability also represents concerns regarding the distribution of scarce resources (Bickenbach, 1992). 37 Even if disabled people are not considered pariahs, those who are thought to bring harm directly to individuals or to the group, there are situations or cultures where disabled people are unwelcome because they are thought to drain resources or deflect attention from other needs. (Linton, 1998, p. 45) From the vantage point of an economic perspective, the location of disability is somewhere between the person and the environment. Proponents of this model are not fully willing to detach from a normative perspective with regards to work. At the core of this perspective, there is still an abundance of economic modeling based on the intersections of curves and ideal averages. This means that human beings are often subjected to becoming cash equivalents. Because the values most endorsed by the economic model have to do wich development and progress, some scholars have voiced concerns about the implicit reduction of human beings to mere numerical representations for the purposes of weighing societal costs against associated benefits. Berube (1996) writes of his experience and reflections after his son was born with Down syndrome: I fear.. .that children like James will eventually be seen as "luxuries" employers and insurance companies cannot afford.. .1 do not want to see a world in which hun.^n life is judged by the kind of cost-benefit analysis that weeds out those least likely to attain self- sufficiency and to provide adequate "returns" on social investments." (p. 52) The fears voiced in these words of a father and a scholar represent the deep-felt and shocking possibilities implicated in reducing humanity to mere economic commodities. Although the economic perspective on disability can be interpreted as 38 looking to '"weed out" individuals with disabilities, there is also a less brutal side to this perspective. While emphasizing efficiency, productivity, and cost-benefit analyses (Bickenbach, 1992), proponents of the economic perspective on disability do acknowledge that disability is not something solely within the individual and therefore that appropriate accommodations should be made to improve opportunities for people with disabilities. For instance, solutions to inaccessible workspaces or restrictive economic policies are grounded in an economic perspective. Social Perspectives It would not be unreasonable to refer to the non-native, biomedical, and economic perspectives on disability as representing the mainstream. Historically speaking, a social perspective is by contrast to the aforementioned perspectives much more recent and less representative of a unified ideology (Bickenbach, 1992). A distinguishing feature, however, is that proponents of the social perspective locate disability entirely in the social environment, never within the individual, implying a socially constructed phenomenon rather than a biomedical condition (Bickenbach, 1992). In many ways, the social perspective emerged in opposition to other perspectives such as the economic, medical, and normative. For instance, citing Harlan Hahn, Bickenbach (1992) writes: Hahn argues that viewing disablement as "an organ defect or deficiency that is located exclusively within the individual" is directly responsible for the present unsatisfactory state of disablement policy.. .disablement policy can be primarily characterized as an expression of sympathy and 39 concern coupled with a persistent inactivity and failure of political will. (p. 84) Because the biomedical, economic, and normative perspectives place the focus on a problem perceived to exist within the individual, and since these older dominant perspectives have been reified as omnipotent in American society, policies are mere expressions of sympathy and inaction because of the erroneous beliefs that it is up to the individual to "overcome" disability. Charlton (1998) also contends that beliefs and values pertaining to disability are socially composed. He asserts that because these biases are strongly embedded in society, people living with disabilities are vulnerable to assimilating these biases, even when detrimental to their personhood. In Charlton's view, some people with disabilities begin to believe that by virtue of their disability they are less capable or less normal than their able-bodied counterparts. An uncontested acceptance of one's position in society, according to Charlton (1998), leads to a sense of self-alienation, which prevents people with disabilities from discovering their capabilities and possible identities. Thus the person with a disability is in some ways stripped of his or her ability to act as an agent in shaping his or her own identities. However, Charlton (1998) does not blame the individual for his or her feeling of inferiority; rather he criticizes the social structures that create barriers for individuals with disabilities to demonstrate their competence through everyday living. Young (1990) argues for a closer look at functions of domination and oppression within the context of social groups in order to bring to light how certain 40 social groups are more or less privileged than others. Although Young (1990) does not explicitly discuss disability per se, her views are applicable to this end. She in particular advocates against a sort of universal treatment of all groups and instead suggests a more heterogeneous solution for diverse groups. While supporting a perspective that allows for more heterogeneity, Young (1990) nonetheless confirms the notion that modern day political theory is reductionistic. Section Summary In summary, I began this section by outlining the most socially prevalent ways in which disability has been defined, and the challenge that this poses in conveying the experiences of someone living with a spinai cord injury. I then synthesized and reviewed several perspectives pertaining to disability in order to build a foundation for the types of social discourses that permeate the social contexts where the participants in this study spend their daily lives. The perspectives that I have put forth in this section are not independent and isolated from one another, but rather connected through a history of disability in the United States. Moreover, these perspectives fall somewhere along a complex continuum of viewpoints where there is a great degree of overlap. As Linton (1998) writes, "casting out and vilifying disabled people is the extreme end of a long and complex continuum" (p. 45). More contemporary ideologies such as those espoused by proponents of the social perspective, tend to offer a more inclusive view of people with disabilities. I use the term "disability" throughout this dissertation and take the position that disability is a product of the interaction between person and environment. Thus, 41 disability is not merely a bodily condition. The socially dominant discourses surrounding disability inform the construction of identities and serve as critical contours in the daily landscapes negotiated through occupations among the participants in this study. Although the participants in this study do not convey an overall sense of discontent with society, they are nevertheless subjected to the perspectives and misconceptions lurking around each corner as they enter into the community to visit their doctor, the bank, the mall, or a friend's party. In this way, these perspectives are important considerations for constructing an understanding of the social discourses that prevail in the environments where the participants live ar>d negotiate identities. Construction Of Identities In the second section of this chapter, I lay a foundation and explore the ways in which identities are created and expressed through active pursuit and engagement in occupations. Just as reducing the definition of "disability" to one or two sentences would be a potentially perilous and challenging task, a brief reductionistic definition of "identity' would be inadequate in conveying the topic of concern here. In this section, I focus on exploring different concepts of identities, and endorsing one particular perspective as most fitting for the analysis in this dissertation. Since I draw heavily on Holland et al. (1998) to elucidate aspects of identities within social worlds, I call upon their words: 42 Identity is a concept that figuratively combines the intimate or personal world with the collective space of cultural forms and social relations. We are interested in identities, the imaginings of self in worlds of action, as social products; indeed, we begin with the premise that identities are lived in and through activity and so must be conceptualized as they develop in social practice. But we are also interested in identities as psychohistorical formations that develop over a person's lifetime, populating intimate terrain and motivating social life. (p. 5) Conceptually framing identities in this way gives credence to the manifestations of personhood and self-expressions through what people do or how others perceive them; furthermore, emphasizing a notion of plural identities that "combines the intimate or personal world with the collective space of cultural forms," identities that "are lived in and through activity," as well as develop throughout a "lifetime" (p. 5). This view of identities is in many ways well aligned with perspectives held by occupational scientists. Jackson (1995) writes, "Personal identity becomes embodied in human action, the specific configuration of events that constitutes one's life, and the symbolic significance of those actions" (p. 47). Hence, in this section I lay a foundation for the construction of identities on different levels, namely personal, social, and occupational. I continue to ground my perspective about identities in a review of literature that has most influenced my thinking over the past few years, specifically literature from occupational science and other disciplines suca as anthropology, cultural studies, psychology, and sociology. 43 Rejecting Some While Embracing Other Theories On Identities In this dissertation I ex:.'the experiences of individuals living with spinal cord injury, and the ways in whi J ,'i-se individuals go about creating and expressing identities through occupations in the context of their daily lives. The notion that identities are inherently a narrative matter (Polkinghorne, 1988), enacted through narratives (Mattingly, 1998), cn jted and expressed through occupations > '3aatell, 2003; Christiansen, 1999; Clark, 1993; Jackson, 1995), and shaped through social practices (Holland et al., 1998) are relatively contemporary concepts. Viewing identities as shaped and expressed through occupations, and borrowing from these more contemporary perspectives regarding the construction of identities affords individual agency, a degree of open-endedness, and a tribute to action. A practice theory of self and identity (Holland et al., 1998), although not without imperfections, affords a particularly good framework for exploring identities and occupation among the participants in this study. Before I proceed with a review of the more compelling literature, however, I briefly want to contrast these perspectives with some older, more problematic theories pertaining to the subject matter. Early on, some scholars conceptualized identity as something that occurred in stages (for example, Erikson, 1959). These developmental stages occurred in a certain sequential order, typically age-specific, and individuals needed to meet certain criteria in order to progress successfully to the next phase. The clear problem with this theoretical vantage point was that it did not account for the heterogeneity among people who go about life in a diverse world. Moreover, given this 44 perspective, people were often forced into certain identity stages in order to satisfy the theoretical model rather than the individualized experiential process (Jackson, 1995). One participant from Cole's (2004) study discussed his discontent with viewinp f he processes that people go through as they reconstruct their sense of identities, in terms of stages: My work has been not an attempt to dismiss the feeling we all have as human beings in the situations we find ourselves, but to criticize the view that people have to be pigeon-holed like that, and that if they do not go through that process then they can never be properly psychologically healed or whole, I think that is nonsense, (p. 210) By focusing on pre-determined identity stages, a vast part of identities are missed, in particular, aspects that might now be better understood as lived identities. It is for this reason that I draw instead mainly from a practice theory of self and identity. Holland et al. (1998) advocate for a view in which identities are socially and historically created through what they refer to as the "self-in-practice" or "authoring self' (p. 32). They develop a practice theory of self and identity by way of what they term a "critical disruption" (p. 23) in anthropological views of self and personhood rooted in a universalist-cuituralist debate. Although I do not go into these debates in detail here (see pp. 19-46, in Holland et al., 1998), I feel that it is important to acknowledge these debates and the evolu.ion of ideas that have influenced the scholarly treatment of concepts relating to identity. What is important here is that the focus here is shifted toward action and context, rather than static molds, pretexts, 45 and stages. Within the context of this perspective, both the social and the individual are celebrated. Outlining A Practice Theory Of Self And Identity Holland et al. (1998) take an interdisciplinary approach to viewing identities, looking outside anthropology and drawing heavily on practice and activity theories 6 . In the practice theory of self and identity (Holland et al., 1998, p. 271) that I draw from here, identities are viewed as being manifested in "practice," and that these "practiced identities" are located in multiple "contexts of activity." These activity contexts can be summarized to consist of "figured worlds," "positional identities," and "authoring selves." Although I will elaborate on these ideas in more detail, 1 offer a simple descript ion of elements that contribute to the process of shaping identities here in order to ground the reader in an overview of this perspective. "Figured worlds" (Holland et al., 1998, p. 49) have to do with the activities, people, objects, relations of power, and collective belief systems that constitute particular milieus between which people move. "Positional identities'" (Holland et al., 1998, p. 125) have to do with both the explicit and tacit undertones of power and privilege that occupy the figured world landscapes where people create and express themselves. "Authoring selves" (Holland et al., 1998, p. 169) has to do with the ways in which people internalize and orchestrate social discourses as ..'ill as negotiate a process of embracing certain identities while rejecting others. 5 In reference to these theories, Holland et al. (1998) mainly draw from Pierre Bourdieu and the Russian scholars Mikhail Bakhtin and Lev Vygotsky. 46 I am drawn to this theory of identities for several reasons. First, this vantage point allows for the broader social contexts in which individuals live, to be centrally recognized. Second, occupations (like activities) are not socially neutral (Jackson, 1995), but rather imbued with socially charged ideologies of power and privilege that are acknowledged in this perspective. Third, people do not necessarily passively accept the socially dominant discourses of privilege, but rather exercise a sense of agency to negotiate the tensions between the social and the more private discourses that have been internalized. In short, this perspective allows for identities and occupations to be viewed as socially embedded, and it allows for a refiguring of social discourses as negotiable through agency rather than absolute cultural molds: Culturally and socially constructed discourses and practices of the self are recognized as neither the "clothes" of a universally identical self nor the (static) elements of cultural molds into which the self is cast. Rather, differentiated by relations of power and the associated institutional infrastructure, they are conceived as living tools of the self- as artifacts of media that figure the self constitutively, in open-ended ways. Second, and correlatively, the self is treated as always embedded in (social) practice, and as itself a kind of practice. Third, "sites of the self," the loci of self-production or self-process, are recognized as plural. (Holland et al., 1998, p. 28) In other words, the "discourses and practices" that circulate in the various societies and communities in which we live, are "culturally and socially constructed." These discourses and practices become tools for people to use in the "open-ended" endeavors of continuously reshaping their identities. This view does not reduce identities to an essential and universal "thing" that is merely superficially redressed over time, nor does it strip the person of individual agency by ascribing what identities are about into a "cultural mold" where selfhood is stored as if in a museum of cultural history. Thus, the concern is "to respect humans as social and cultural creatures and therefore bounded, yet to recognize the processes whereby human collectives and individuals often move themselves.. .from one set of socially and culturally formed subjectivities to another" (Holland et al., 1998, pp. 6-7). It is amidst these dynamic processes where identities emerge and are shaped in everyday social life, where the "self-in-practice" mediates and where the "authoring self orchestrates. I now move to delineate the three cornerstones (figured worlds, positional identities, and authoring selves) of a practice theory of self and identity that serve as contexts within which to frame identities. Figured Worlds: An Initial Context Of Identity The concept of figured worlds serves as a foundation for considering contexts where people create and express themselves. Identities are viewed as being constructed through interactions with the social environment first, and then on a more intrapersonal level. In this way, figured worlds provide a framework for interpreting specific social events within the broader historically rooted cultural structures. According to Holland et al. (1998), what is particularly relevant about their concept of identities is that the immediate contexts in which people's identities are expressed are not neutral places to communicate to themselves or others, but are imbued with a social charge that continually repositions individuals in relation to others, as well as in relation to the underlying discourses and ideologies informing 48 abstract contours or boundaries of figured worlds. This is of particular value to occupational science when considering the subject matter of identities, because "[occupations are carried out within a particular physical, social, political, and historical environment.. .through human action, the environment is transformed, as are its social traditions" (Jackson, 1996, p. 342). I am not implying that environments are synonymous with figured worlds, but, rather, that within a practice theory of self and identity (Holland et al., 1998), figured worlds serve as a context in which to consider the various dispositions of politics, history, and power that influence the social process of shaping identities. The boundaries of figured worlds are socially constructed by the collective as well as by each individual member. The mundane events of daily life are as much a part of this world as are spontaneous and imaginative interpretations of the events. "Figured worlds rest upon people's abilities to form and be formed in collectively realized 'as if realms" (Holland et al., 1998, p. 49), although these realms are often experienced as "real" rather than "as if' or imagined in the colloquial sense of the phrase. Furthermore, figured worlds are continually shaped and remolded to encompass the everyday narratives, dramas, and experiences of its membership. Figured worlds are peopled by characters and sustained through historically relevant activities, rituals, traditions, spaces, objects, and symbols (Holland et al., 1998). By definition, a figured world is a "socially and culturally constructed realm of interpretation in which particular characters and actors are recognized, significance is assigned to certain acts, and particular outcomes are valued over others" (p. 52). It is 49 within these socially and culturally constructed realms that people act as agents to begin authoring their identities (Holland et al., 1998). People belong to multiple figured worlds and one might even suggest that "disability" constitutes a figured world populated with characters, activities, discourses, belief systems, and various objects. People move between multiple figured worlds, continuously recreating and connecting identities within different contexts, thereby achieving a sense of plural identities. For instance, in a university setting, a professor creates and upholds particular identities that are recognized and endorsed within the figured world of academia, but these identities are renegotiated, shifted, and repositioned along a different storyline informed by different ideologies when at home in a world of romance, where the characters are not defined by academic credentials but by more personally intimate and shared experiences. Figured worlds denote a sense of social community but contextually go beyond just the people, environment, and underlying belief systems, adding a dimension of active engagement in the occupations that transpires therein: Figured worlds take shape within and grant shape to the coproduction of activities, discourses, performances, and artifacts. A figured world is peopled by the figures, characters, and types who carry out its tasks and who also have styles of interacting within, distinguishable perspectives on, and orientations toward it. (Holland et al., 1998, p. 51) Figured worlds provide abstractions and social contours by which to recognize and interpret certain collectives, such as a realm of academia (Holland et al., 1998), or a more specific context like an Alcoholics Anonymous group (Cain, 1991; Holland et 50 al., 1998). Drawing from Cain's (1991) research with Alcoholics Anonymous (AA), Holland and her colleagues illustrate various aspects of figured worlds more concretely. For instance, within the figured worlds of AA which were reported by Holland et al. (1998), participants came together to redefine their lives through telling stories and collecting tokens to represent their success in maintaining sobriety. The interpretations of AA as a figured world have not gone without criticism; however, of concern here is the application of crucial elements that offer a context in which to consider identities. I draw on Holland et al. (1998) to extrapolate the conceptual meaning of figured worlds, using their analysis of AA to illustrate how this figured world represents more than just a group of people who meet weekly. Instead, AA is interpreted as a figured world populated with characters, activities, objects, and a collectively scripted storyline. The most critical point in the foundation of this theory, from Holland et al.'s (1998) perspective is that the figured world of AA is about refiguring identities, "from drinking non-alcoholics to non-drinking alcoholics, and.. .how they view and act in the world" (p. 66). This transformation of identities occurs through a process of coming together as a group, telling stories about life before AA, learning the ways to tell and be told these stories, rewarding members with tokens representing length of sobriety, and providing peer support, among other more subtle practices. These are the activities that shape this figured world. To synthesize the interpretations put forth by Holland et al. (1998), the characters populating the figured world of AA consistent of "drinking non- 51 alcoholics" and "non-drinking alcoholics." In an oversimplified way, "drinking non- alcoholics" are "alcoholics" who do not believe that their consumption of alcohol is a problem, and "non-drinking alcoholics" are "alcoholics" who have accepted that alcohol negatively affects all areas of their lives and thus feel the desire to actively change this lifestyle. These AA members gather on a regular basis to provide peer support through shared rituals and interpretations of their storied accounts of encounters and experiences with alcohol. Holland et al. (1998) describe these storytelling activities in the following way: "In personal stories, oldtimers in AA tell their own life stories or part of them- their drinking histories - and how they came to be involved in A A. These stories contribute to cultural production and reproduction" (p. 71). Furthermore, during certain activities, members celebrate the accomplishments of fellow members by giving physical tokens to represent symbolical milestones along the path of recovery. These tokens serve as one type of object or artifact. Holland et al. (1998) describe this practice: "At meetings he picks up colored chips, amid applause, to mark the amount of time he has been without a drink" (p. 75). Holland et al. (1998) also draw from Vygotsky to elucidate another type of artifact, one that exists within the mind and serves to alter behavior. It is what they refer to as a mediating device. Mediating devices, specifically semiotic mediating devices, develop from the discourses of the figured world and become a type of mental abstraction by which to alter behavior. As Holland et al. (1998) observe, "The behaviors that mark progress in the AA program become subjective mediating 52 devices; they become means by which the new member directs and evaluates his own behavior" (p. 75). In Holland et al.'s (1998) words, these mental abstractions become "tools" or internalized "voices." For instance, when the recovering alcoholic is overcome by feelings of wanting to have a drink, the symbolic remnants of the voice of a peer from A A might resonate within the individual wanting a drink. The voice might be echoing the beliefs and stories of other AA members, reminding and encouraging the person not to drink. In this way, the voices are mediating devices by which to alter the drinking behavior. Via a particular activity of telling "personal stories" (p. 71), members of AA begin to learn about the cultural scripts, or storylines, of this figured world through listening and telling stories. Although these storylines are described as narrative forms, there appears to be little open-endedness about the storylines represented in figured worlds. According to Holland et al. (1998), the AA storyline objectifies the cultural aspects underlying the figured world. Rather than authoring stories, these storylines become a sort of script or model by which to compare one's own life and identities to those of others. Thus, new members enter into the figured world of AA comparing their own experiences to those of other members, thereby learning the culture of the community while simultaneously learning to recognize themselves within the AA storyline. It is necessary to digress briefly to clarify that storyline in the sense that Holland et al. (1998 ) use the term is more like a social script than it is an open-ended and fluid storyline as many scholars of narrative have used the term. In their edited 53 book, Narrative and the Cultural Construction of Illness and Healing, Mattingly and Garro (2000) collect essays that "explore stories as ways of thinking through past, ways of making sense of ongoing situations and guides for future action" (p. 17). A narrative framework allows for a storyline that is more open-ended, pays homage to both the individual and the collective, and incorporates a temporal dimension (Bruner, 1986, 1990, 2002; Mattingly, 1998; Mattingly & Garro, 2000). Garro and Mattingly (2000) in particular illustrate the relation between narrative and lived experience, drawing extensively on perspectives rooted in philosophy and literature. The constructive power of narrative becomes evident when noting its rhetorical force, a theme taken up by many of the essays included here. Because effective stories have perlocutionary power, they can influence the subsequent actions of narrator and audience. Powerful stories can shape future actions in decisive ways, and this only increases the complex and intertwined relation between telling stories and taking actions, (pp. 17-18) As I draw from Holland et al. (1998) to situate identities within figured worlds, 1 use their form of "storyline;" however, in the broader spectrum of considering the self authoring among people, I subscribe to a narrative perspective aligned with a more open-ended and comprehensive view of the person as an agent in shaping his or her life (Bruner, 1986; Mattingly, 1998; Mattingly & Gillette, 1991). 1 now return to conceptualizing figured worlds. Figured worlds provide a context in which to interpret particular events, activities, and people, as well as a framework in which to perpetuate and celebrate shared beliefs. To people outside the world of AA, the plastic poker chips used to honor 1 year of sobriety might carry 54 little value, both emotional and financial. However, to the AA member, these objects carry symbolic meaning both on a personal level as well as collectively understood by other members within AA. In this way, the meaning and interpretation of activities and objects within AA are refigured. Furthermore, the stories told become powerful tools by which to alter behavior. This refiguring is a product of the context referred to here as figured world. It is within this reframing of people, practices, and objects that people, in part, reshape and express their identities. Positional Identities: Social Position And Power As people move between the various figured worlds that constitute the environments of their identities, they are often afforded greater or lesser privilege depending on their position within these worlds. This aspect is critical to understanding a dimension of complexity inherent to the identities formed within the worlds that I have laid out thus far. From the perspective of Holland et al. (1998), figured worlds are accessed by self-initiated entry or by being recruited. However, not all worlds are accessible, sometimes due to disinterest, but other times due to privileges simply being denied. These privileges can be those of credentials (in academia for example), or the more tacit and predetermined privileges of aristocratic legacies. Most people will be denied the privileges associated with, for example, being part of a country's royal family. 55 Holland et al. (1998) distinguish between two interlinked types of identities (positional and narrativized) relating to the social power and privilege of interest here. Of the first type of identity, they remark: Positional identities [italics added] have to do with the day-to-day and on-the-ground relations of power, deference and entitlement, social affiliation and distance - with the social-interactional, social- relational structures of the lived world...Positional identity, as we use the term, is a person's apprehension of her social position in a lived world that is, depending on the others present, of her greater or lesser access to spaces, activities, genres, and, through those genres, authoritative voices, or any voice at all. (pp. 127-128) Of the second type they write, "Narrativized [italics added] or figurative identities, in contrast, have to do with the stories, acts, and characters that make the world a cultural world...Figurative identities are likened to propositionality, to the referential, semantic facet of speech" (pp. 127-128). Thus, narrativized identities are about the "storylines" evoked by, and associated with, who we are in a particular figured world, whereas positional identities are about the privileges afforded through our actions. As an example, the power and privilege afforded to the king of a small country is scripted along the narrativized identities of being a king. However, as this king brings his troops to fight against a larger and more dominant country, his positional identity might not be afforded as much privilege when his lands and people are conquered. To untangle these ideas. Holland et al. (1998) draw upon Pierre Bourdieu's studies with Kabyle peasants in Algeria. Of particular interest to this discussion are 56 the concepts of "field" (Bourdieu, 1985; Holland et al., 1998, p. 58), "habitus" (Bourdieu, 1977, 1985; Holland et al., 1998, p. 58), and "symbolic capital" (Bourdieu, 1977; Holland et al., 1998. p. 129). Bourdieu (1977) described mechanisms by which the Kabyle men expressed and protected their sense of "honor" in their communities. Over generations, families grew or relinquished different degrees of honor through their work and interactions. Holland et al. (1998) draw from these analyses, extrapolating that men of high honor in these Algerian villages were granted narrativized identities along a particular storyline of "honor." This honor was embedded within the "fields of power" (Bourdieu, 1985) where they carried out their daily life. Moreover, men of high honor in these villages were granted privileges in the form of "symbolic capital," in other words, a kind of "capital" that was not immediately utilitarian in nature but readily convertible into more concrete forms of economic or otherwise recognized assets of social value (Bourdieu, 1977). Within these same villages, the act of exchanging gifts was more than just the giving of a present. The gift exchange bounded gift giver and gift receiver in a relationship represented by the potential for relative reciprocity. If the recipient of a gift was unable to reciprocate, he lost honor (Bourdieu, 1977; Holland et al., 1998). Thus, by the act of the gift exchange itself the characters' positional identities shifted in relation to one another - yielding symbolic capital to greater or lesser degrees - depending on the ability to reciprocate in action. Finally, Holland et al. (1998) emphasize that these positional identities are not always explicit. Rather the bestowing of much of soc ll privilege occurs in 57 subtle tones within the cultural fabric of the figured worlds. Holland et al. (1998) liken this to the historically and culturally perpetuated practices that become embodied over time in what Bourdieu (1977) has referred to as "habitus." Like identities within figured worlds, habitus is not represented by goals, but rather by a process. Over time, habitus is embodied, representing mannerisms, beliefs, a way of being that is somehow self-sustained into the future - from generation to generation - but always supported by the past events and experiences. Much of habitus is unspoken and in many ways tacitly developed through engagement with a person's immediate cultural environment. In this way habitus is part of human existence through its embedded nature in what people do and how they do those things. Although habitus is a mechanism by which individuals' actions are shaped through cultural dispositions and practices, people can also affect the broader structures of the co.Active habitus. However, according to Bourdieu (1977), the degree to which individuals are afforded agency in this context is hampered because to change habitus would arguably take many generations. On the other hand, Holland and her colleagues afford more agency to people than does Bourdieu's (1977) view alcrie. From Holland et al.'s (1998) perspective, habitus profoundly impacts the way people are perceived by others in figured worlds, as well as how individuals come to form narrativized and positional identities of more or less privilege. Although not made explicit, it is perhaps in the on-the-ground positional identities where people are able to exercise most agency. 58 Authoiing Selves Up to this point, I have described the contours, the foundational boundaries, of what Holland et al. (1998) call a figured world and the dynamics of power that exist therein. It is within these boundaries that the more fluid activities and discourses of Holland ev al.'s (1998) practice theory on self and identity circulate. "Authoring" is conceptually one of the most complex aspects of this perspective about how people form themselves and for whom they are seen. This is also an aspect of constructing identities that is powerfully compelling and fascinating for occupational science, because occupational scientists have honored people's capacity for agency through the view of people as "authors" of their life, while at the same time, attending to the historical, political, social, and cultural forces that constrain or enable this authoring process (Clark et al., 1991; Jackson, 1996; Yerxa et al., 1989). This concept will be the focus in Chapters 6 and 7 of this dissertation Holland et al. (1998) extract from the works of the Russian scholars mentioned earlier, an intricate channeling and negotiation of discourses that not only reverberate within people, but also are socially perpetuated and altered through actior. Holland et al. (1998) direct attention to the intricacies of "authoring" identities through these discourses within social worlds. This process is described as: (1) the genesis of the products (improvisations) that come from the meeting of persons, cultural resources, and situations in practice; and (2) the appropriation of these products as heuristics for the next moment of activity. To the extent that these productions are used again and again, they can become tools of agency or self-control and change. (Holland et al., p. 40) 59 The "genesis" or birth of the improvisations to which they refer is both developmental in its origins and orchestrated in its applications, in the sense that cultural resources and socially constructed tools need to be taken in through certain practices, and once these resources are internalized, they are used in order to achieve desired outcomes. It is through a certain improvisation and orchestration that identities are formed and negotiated in the moment and over time. Utilizing social discourses in constructing identities has to do with words as mental tools by which to influence cognition and behavior. Here Holland et al. (1998) derive from Lev Vygotsky's work and, of particular interest to this literature review, the developmental process of internalizing discourses and "semiotic mediation" or "symbolic bootstrapping" (Holland et al., 1998, p. 38). Holland et al. (1998) draw heavily on Vygotsky to elucidate a developmental process of these discourses from the interpsyc ho logical to intrapsychological: Inner speech is preceded in ontogeny by external speech.. .Vygotsky thus reversed the Piagetian formulation (that speech begins for oneself), and argued that speech begins for others and then eventually is directed toward oneself. Speech directed toward oneself begins out loud (as so called egocentric speech), but eventually becomes silent, inner speech, a speech whose formal characteristics...become differentiated from those of social speech, (p. 175) Thus, Holland et al. (1998) extrapolate from Vygotsky's work two concepts. First, the voices within us are internalized over time through listening, imitating, and only after this developmental process do we begin to author ourselves through these voices. Second, the words of others that are constantly circulating in the world 60 where we live function as mental "tools" (p. 177) by which people can alter their behavior. For instance, the stories of AA serve as discourses that are collectively created, shared, and eventually internalized. The recovering alcoholic begins to transform him or herself from discourses of "drinking non-alcoholics to non-drinking alcoholics" (p. 66). The recovering alcoholic described by Holland et al. (1998) is likely to want to have a drink during recovery, but it is the voices of other non- drinking alcoholics that exist as discourses inside them - as "semiotic mediating devices" - that function as "symbolic bootstraps" by which they can pull themselves up. In this way, internalized discourses serve as "tools," as ways in which people can alter their behavior and thus form alternative identities. Where Vygotsky's work helps inform a developmental aspect of internalizing discourses and using these to alter behavior, Mikhail Bakhtin helps elucidate a perspective on dialogism, focusing on the orchestration of discourses, both internal and external. This sense of "orchestration" relates to the mechanism by which the authoring self negotiates an internal environment occupied by multitudes of discourses in the form of "vo.ces" (Bakhtin, 1981; Holland et al., 1998). What lies at the heart of dialogism is this orchestration of discourses, the idea that collectively formed and perpetuated discourses (social discourses) become individually internalized, "internally persuasive" (Holland et al., 1998, p. 182), and are then organized to inform the individual identity-making process within a broader network of social interpretations: 61 The vantage point rests within the "I" and authoring comes from the I, but the words come from collective experience.. .The mixture of the perspective of the "I" and the words of others creates the contours of Bakhtin's contribution to our ideas of selves and identities, (pp. 171-172) From this perspective, it is not a simple unidirectional flow of material from the collective social onto the individual's inner space of authoring. In other words, individuals are not merely being addressed unilaterally. Rather, it is suggested that the individual populates his or her inner space with words and discourses from the outside world, accepting some while rejecting others. Bakhtin (1981) asserts, "Within the arena of almost every utterance an intense interaction and struggle between one's own and another's word is being waged, a process in which they oppose o~ dialogically interanimate each other" (p. 354). Thus, the individual is both "addressed" and "answers" (Holland et al., 1998, p. 169) in a dialogic fashion between discourses from both the inner self and the outside worlds. Furthermore, the individual does not only tell others about herself, or even herself about herself, but also informs herself from the pei^pective of others (Holland et al., 1998). This process of internalizing and orchestrating discourses in a dialogic fashion is not a neutral endeavor, but one charged with tensions, both internal and external. Again, Bakhtin (1981) writes, "The utterance so conceived is a considerably more complex and dynamic organism than it appears when construed simply as a thing that articulates the intention of the person uttering it" (p. 355). This "dialogic" self 62 authoring process is very much influenced by the power dynamics and social tensions described earlier, and found in the worlds where people carry out their lives. Linking Back To Occupational Science To recap, in keeping with a line of scholarship in sociohistorical psychology and later in activity theory, Holland et al. (1998) celebrate a perspective that identities are not about isolated people in a desolate environment. Nor are identities about people passively responding to what is occurring around them; rather, people are actively engaged in the figured worlds into which they enter. Fran an occupational science perspective, the concept of occupation is well aligned with philosophical assumptions inherent in Holland et al.'s (1998) theory pertaining to identities because occupations are not merely activities or "doing," but, rather, imbued with experiences and complexities situated in social milieus, tensions, and discourses. They are always in flow of doing something - the something being a historical, collectively defined, socially produced activity - and it is within this meaningful intent toward their surroundings that they respond to whatever they encounter in the environment. (Holland et al., 1998, p. 39) Because figured worlds contextually go beyond people and environments, and instead add a dimension of the active engagement the activities that transpire within these worlds, the focus is shifted to a perspective emphasizing "occupation." While the participants described by Holland et al. (1998) construct and express identities "in the flow of doing something" (p. 39), the theoretical focus is not on the 63 actual "doing," but rather on the broader social, cultural, political, and historical productions and performances that inform this identity-making process. Discussion and analysis can then be undertaken to consider the complexity of occupation.. .since it is not actually easy to list or classify occupations based on what a person is doing. For example, the professional tennis player does not experience nor perceive tennis in the same way as the amateur athlete who plays for fun and fitness. (Christiansen & Townsend, 2004 p. 4) Individual experiences are critical to these identity-making processes initiated and enlivened through occupations, deeply married to a social milieu. In as far as this remains the focus, in this dissertation I will include and explore perspectives accentuating positions of power and privilege within social and historical relationships and spaces. Moreover, to the extent that cultures, media, and polices inform social discourses of and against disability, I also explore these theoretical applications in my analyses. However, in addition, I focus on the ' uoing" of identities through ordinary everyday occupations. Section Summary Constructing identities and expressing identities is a continuous process of negotiation. Identities constantly exist between inner aspects of the person and external phenomena that are socially formed and perpetuated. Internal aspects of identities are constantly undergoing change and orchestration through the internalization of outer discourses. For individuals living with spinal cord injury there is an amalgamation of added unpredictable obstacles and challenges lingering 64 in the outside social world. Understanding the construction of identities within a variety of contexts and through a variety of occupations is critical in developing a deeper appreciation for identities lived through occupation. Furthermore, critical to this endeavor is the need to explore how these outside discourses are embedded and manifested within occupations. The Potentiality Factor In Occupation The final point critical to the foundation of this dissertation has to do with a concept referred to as "potentiality," similar to its more common form "potential," but with a slight difference in nuance. Up to this point, I have provided a theoretical framework as foundation for subsequent analyses in the construction and expression of identities through occupations. Critical to this foundation has been topics of social context, position and power, as well as a particular perspective on the orchestration of discourses. All along, my purported interest has been in the occupational experiences of the participants in this study. In my analysis, I came across an intriguing aspect of deeply felt potential for future identities, experienced through occupations. This encounter with potential is not unfamiliar to occupational science per se, as Jackson (1998) states, "Experiencing occupation, the flow of one's body and mind in old and new activities on a preconceptual level, is a powerful tool for beginning the process of embracing a new life" (p. 471). Even the concept of identity as such is a "process of actualizing what is potentially possible in one's life" (Polkinghorne, 1988, p. 151). 65 Potentiality, however, has a very particular meaning rooted in a tradition of philosophy, and the term "potentiality" in this context derives from the roots "potenza" and "potere," meaning "potency" and "can," respectively (Agamben, 1999, p. 177). Potentiality is a state of "power" to effect change, in order to produce "actuality" (Cohen, 2003; Harman, 2002). In this way, potentiality can be understood as more than mere possibilities. It is not about happenstance possibilities that materialize out of "emptiness," but about possibilities that exist in something that is already present, but has just not yet taken shape or form (Agamben, 1999). Of particular concern here is the potentiality inherent in occupations to bring into actuality expressions of identities. Many scholars have written about potentiality, often drawing from Aristotle, and have applied the concept in a variety of endeavors (Cohen, 2003). Here, I draw mostly on Agamben (1999), whose focus adds a dimension of what is present in potentiality. Agamben (1999) comments that there are two kinds of potentiality that need to be untangled. Generically, potentiality means merely that there is a possibility that some future event will occur as a result of some transformation or change (Agamben, 1999). For example, an infant possesses the potential to become an astronaut as much as she has the potential to become an actor, doctor, or teacher. The second type of potentiality, however, is not so "generic," and it is the type of potentiality that is of interest here. A person who has some particular knowledge and who has the power to act on that knowledge embodies this second form of potentiality. Thus, potentiality in this sense exists as a basic material in 66 present knowledge. To exercise power to act on that knowledge in order to bring about change, and to bring into actuality something from this knowledge, is potentiality. The assumption that people have agency is ever present within this notion, meaning that people not only have the power to act, but the power to not act (Agamben, 1999; Cohen, 2003). Thus, a scholar of occupational science has the potential to conduct research and publish findings to disseminate among other scholars, and at the same time, the occupational science scholar has the potential to not do research and not share any knowledge with others. In Agamben's (1999) own words: Unlike mere possibilities, which can be considered from a purely logical standpoint, potentialities or capacities present themselves above all things that exist but that, at the same time, do not exist as actual things; they are present, yet they do not appear in the form of present things, (p. 14) The term potentiality in this sense denotes a process of bringing into actuality- something that lingers and exists within us, such as skill or knowledge. Here I want to draw on a beautiful example from Agamben (1999): In an exergue to the collection of poems she entitled Requiem, Anna Akhmatova recounts how her poems were born. It was in the 1930s, and for months and months she joined the line outside the prison of Leningrad, trying to hear news of her son, who had been arrested on political grounds. There were dozens of other women in line with her. One day, one of these women recognized her and, turning to her, addressed her with the following simple question: "Can you speak of this?" Akhmatova was silent for a moment and then, without knowing how or why, found an 67 answer to the question: "Yes," she said, "I can." (Agamben, 1999, p. 177) In this passage, a writer is recognized and posed with a question about whether she can present, in the form of words, something about this experience outsit < he gates of a prison where her son is being held. It is what Agamben (1999) writes next in his analysis of this event in terms of potentiality that moves the reader to understand the power of potentiality and what it can bring to the study of occupation: Did she perhaps mean by these words that she was such a gifted poet that she knew how to handle language skillfully enough to describe the atrocious things of which it is so difficult to write? I do not think so. This is not what she meant to say. For everyone a moment comes in which she or he must utter this "I can," which does not refer to any certainty or specific capacity but is, nevertheless, absolutely demanding. Beyond all faculties, this "I can" does not mean anything - yet it marks what is, for each of us, perhaps the hardest and bitterest experience possible: the experience of potentiality, (p. 178) Life is full of twists and turns, sometimes bringing upon us the challenges of disability. As we experience life through our occupations, I suggest that it is in the moments when we are deeply engaged in our occupations when we do not always know how but we nonetheless know that we can. Identities, too, are formed in these worlds where we carry out our occupations (Clark, Wood, & Larson, 1998). In this way, occupations are often about "being" and "becoming" (Fidler & Fidler, 1978; Hasselkus, 2002; Wilcock, 1998), but in worlds with social contexts that are filled with both empowering and disempowering circumstances and discourses. Agamben (1999) does not put forth examples exuding necessarily happy feelings, but it is 68 perhaps in these examples of a potentiality in the form of "I can," couched in the "bitter experiences" of atrocity, where the meaning is felt most deeply. I do not mean that disability is about atrocity, nor that it is necessarily a bitter experience, but from the perspective of the participants in this study, facing a new life with a spinal cord injury is at least initially an experience of ambivalence and sometimes embittered encounters. In that context: Should disease or disability strike, individuals will be able to reconstruct meaningful lives - drawing on threads of their past selves to create a sense of continuity in their new situation...Thus a person's history of occupation, to some extent, shapes what he or she will become in the future. (Zemke and Clark, 1996, p. vii) This idea of becoming and deeply felt sense of "I can" exist as potentialities in occupations. As Jackson (1998) declares, "The important point is that occupation is a potent medium for eliciting unarticulated, unprocessed, felt experiences that can potentially prompt emotions of joy and images of a future self' (p. 471). In order to understand identities conceptually as a form of "being" as well as "becoming," occupational scientists focus on the "doing." Section Summary In summary, I suggest that it is in the actual doing of occupations that people experience a sense of potentiality. Like Matheson (2004), the woman 1 introduced in Chapter 1 who won 3 gold medals in the Nagano Paralympic Games, it was through a gentle prodding that she came to imagine new possibilities. However, it was through the actual doing of such occupations as swimming that she realized the 69 potentiality in her that eventually led to her becoming a gold medallist. That is not to say that every potentiality has to represent an exemplar quality, nor that potentiality has to be couched in such a positive light always, but potentiality exists within people and is a source of the "I can" in occupations. Chapter Summary The practice theory of self and identity (Holland et al., 1998) offers a broad perspective, and what I am concerned with most are the experiences of "doing" identities through occupation among four individuals living with spinal cord injury. A key dimension to the practice theory of self and identity (Holland et al., 1998) that I draw from in this dissertation, is the idea of "activity," which Holland and her colleagues trace to Bakhtin, Bourdieu, and Vygotsky. It is largely because of this thread that I suggest a particular compatibility between the tenets of occupational science and the practice theory of self and identity. The complexity afforded by this kind of multi-theoretical lens is of great interest, especially when considering issues having to do with disability. As Christiansen and Townsend (2004) note, "Occupations are more than activities or tasks. Occupations are invested with a sense of purpose, meaning, vocation, cultural significance, and political power" (p. 2). Occupations lie at the center of the analysis in this dissertation, not as simple activities, but as complexities that are about people, actions, environments, social discourses, disability, social privilege, work, recreation, and intricate webs of relations. In the most ordinary 70 occupations, participants find potent mechanisms through which to experience their own potentiality. The stories presented in subsequent chapters highlight environments that encompass a historical and political reality of disability in America, and a context that gives credence to the socially constructed borders of a social milieu where participants live their identities through occupations. 71 CHAPTER 3 Research Method In this chapter I provide a background to the research methods used; I also delineate the research procedures ^nd analyses in this study. In occupational science, as in any field, the problem determines the type of approach used to answer the research question(s) at hand (Ottenbacher, 1992). In short, the research question defines the research method (Seidman, 1998). This is an ethnographic study (Lawlor & Mattingly, 2001; Mattingly & Lawlor, 2000), and it is about the construction and expression of identities through both ordinary and momentous occupations within the contexts of everyday life. I entered into and participated in the lives of four individuals living with spinal cord injury over an 18-month period, and I used interviews and participant observation to explore their experiences. I begir with the theoretical underpinnings that guided this project. Occupational scientists honor the notion that occupations are enacted and experienced within the context of a person's life (Clark et al., 1991; Yerxa et al., 1989), and also acknowledge the complexity of the contexts in which these occupations are carried out (Gray, Kennedy, & Zemke, 1996). For instance, albeit people can make choices about the orchestration of occupations within their life (Clark, 1993; Clark et al., 1991; Jackson, 1995, 1996; Yerxs et al., 1989), but these choices are not isolated from the social complexities in which they are expressed (Jackson, 1995). Moreover, studying occupation is about the way people make 72 meaning and shape their identities, through connecting seemingly unrelated events into stories enlivened with reason, motive, and symbolism ^Clark, 1993; Jackson, 1996; Mattingly, 1998). The principle concerns and the types of research questions that are of interest in occupational science are in concert with the parad ifT ms of qualitative research (Bailey & Jackson, 2002; Clark et al., 1997; Clark et al., 1996; Mattingly & Lawlor, 2000; Spencer, Krefting, & Mattingly, 1993; Yerxa et al., 1989). Qualitative research is a broad designation used to describe inquiries that rely on information obtained in the form of words rather than numbers (Schwandt, 2001), moreover representing the particular way that a research question or problem is approached. Unlike quantitative research approaches, the qualitative research study seeks to build theory and depends on the accuracy of data based on trust, and accuracy of interpretations based on depth of inquiry. Qualitative research is about methods of analyzing a particular kind of information, primarily that of text, which is constructed through audiotaped interviews, observations, field notes, and/or documents (Lincoln & Guba, 1985; Polkinghorne &, Gribbons, 1998). Ethnography and narrative inquiries are among some of the more common approaches used within social sciences and occupational science in particular, to collect such qualitative data (La»vlor, 2003; Mattingly & Lawlor, 2000; Polkinghorne & Gribbons, 1998; Schwandt, 2001). Analytic method? informed b> narrative or grounded theory have been said to be among the most common within health care research employing qualitative methods (Lawlor, 2003; Spencer et al., 1993). 73 Furthermore, there is an underlying assumption that people rely on past events and experiences in order to make sense of their world; moreover connecting seemingly random everts with a plot and assigning motives, intentions, and reasons to actions (Becker, 1997; Bruner, 1986; Mattingly, 1998; Polkinghorne, 1988; Polkinghorne, 1995). It is up to the researcher to find and excavate specific moments from an entanglement of lived experiences (Wilson & Hutchinson, 1991). Qualitative research can thus contribute to an understanding of how people make sense of their worlds and of themselves within these worlds. This is in keeping with the foundation for qualitative inquiry and occupational science (Krefting. 1991). The purpose for using a qualitative research approach here is to gain knowledge about the meaning of human action (Schwandt, 2001), and about the complexity of human experiences within the context of daily life (Spencer et al., 1993). Occupational science is based on tenets, such as that people have the capacity to exercise agency in choosing and orchestrating their occupations, albeit not without social forces either enabling or limiting these choices. People make sense of events in highly individual ways and within shifting social contexts. This contributes to the way in which they continue to shape and express who they are in social as well as private settings. Thus the analytic focus is on the individual and her or his engagement in occupations. It is for this reason that the qualitative approach is valuable to explore and ascertain information about how people go about reconstructing and expressing identities through occupations. Moreover, how are these occupations enacted and experienced among a group of individuals living with 74 spinal cord injury? Fundamental to the qualitative inquiry is the notion that people's experiences constitute a basis for human knowledge, thus emphasizing the informant's perspective, and, more importantly, the impact of these experiences on the informant's identities, lived through occupations. Situating This Study Within A Broader Study The initial impetus for this study was born out of an opportunity that I was presented with while still taking courses as part of the doctoral program in occupational science at University of Southern California (USC). The degree of personal and academic fulfillment that has come from this initial opportunity is vast, however to the extent that thij influenced the me^' ods of this dissertation, I would like to situate this study within the broader context of a federally funded investigation led by Drs. Florence Clark and Jeanne Jackson from the Department of Occupational Science and Occupational Therapy at University of Southern California (USC), in collaboration with the Spinal Cord Injury Program at Rancho Los Amigos National Rehabilitation Center (RLANRC) (Clark, Rubyi, Jackson, Uhles-Tanaka, & Atkins, 1999). I shall refer to this project here as the USC- RLANRC Study. Clark et al. (1999) used an ethnographic approach to investigate how such aspects as occupations, lifestyle choices, habits, beliefs, values, and environment influ 1 the development of pressure ulcers within a daily living context among individuals living with spinal cord injury. The USC-RLANRC project team focused on the individual experiences pertaining to these pressure ulcers and the events surrounding the development and treatment of the ulcer. As a recruitment criterion, all of the participants in the USC-RLANRC Study experienced at least one event of a medically serious (stage 3 or 4) pressure ulcer. Because of the high incidence of pressure ulcers among individuals living with spinal cord injury (Ditunno & Formal, 1994; Fuhrer et al., 1993; Sapountzi- Krepia et al., 1998). the USC-RLANRC researchers wondered whether individuals who were able to negotiate the many obstacles of life, while simultaneously avoiding some of the potential adversities such as pressure ulcers, might have valuable information to share about the way they balance their everyday life. It was purported that if an individual with a spinal cord injury never experienced a pressure ulcer, then he or she was in some ways part of an exemplar minority group. I was invited to contribute to this larger study, by providing information relating to in-depth accounts of occupations situated in the everyday life of a group of individuals living with spinal cord injury that had never experienced pressure ulcers. I received support in the form of mentorship in qualitative research methods and first-hand experience relating to the design and implementation of a large grant operated project. Although the data from my study might contribute to the larger USC-RLANRC Study, the research questions and aim were not embedded in that of the broader grant project. Par*' -inant Selection I relied on techniques of network and convenience sampling (Polits & Hungler, 1999) to recruit participants for this study. All recruitment efforts commenced upon receiving final approval from the Institutional Review Board (IRB) committees at both University of Southern California (USC) and RLANRC (see App,..dix A). Because I was able to rely on the institutional connections of the broader USC-RLANRC Study referred to earlier, 1 initially began recruitment at Rancho Los Amigos National Rehabilitation Center (RLANRC) in California. First, I contacted the occupational therapy department and requested that information about my research project be shared with potential participants. Sec ond, I co'.tacted one of the administrative assistants at RLANRC who was handling the USC- RLANRC Study. I requested that she share information about my research project with potential participants that she came across. I supplied all my referral sources with information about the study as well as my contact information. I also posted fliers with similar information relating to my research project in common areas at RLANRC (see Appendix B). Last'y, 1 asked people who might have contact with individuals living with spinal cord injury to share information about the project with anyone that they might come across who would met the enrollment criteria. Ultimately participants recruited into this study came from multiple referral sources. Within the first 2 months of recruitment, I had received 7 phone calls from people expressing an interest in my study. Some of these contacts were directly from RLANRC sources while others were via word of mouth. By the end of the second month of recruitment I had enrolled five participants in the study. I decided against enrolling one woman because she lived more than 150 miles from my residence. I felt that it would be difficult to drive to meet her on a frequent basis and suspected 77 that I might have difficulty scheduling times to meet if relevant last minute events were to arise. I decided against enrolling another person, a man, because I had already enrolled three men. Because recruitment was progressing as scheduled, I decided to wait in an attempt to recruit another woman into the study. Moreover, I felt that enrolling six participants would prevent me from achieving sufficient time and depth with each of the informants. After about ten months, another person called to express interest in the study. At that point in the study I was focusing my interviews and participant observation efforts with the active participants and decided against enrolling another person. I felt that I had achieved good rapport with the participants in my study, and was able to meet with each participant on a regular basis. I did not want to interrupt the flow of these relationships by adding another person, thus splitting my time. The criteria for enrollment was that the participant had to be at least 18 years of age, had lived with a spinal cord injury for at least 1 year, and had never experienced a pressure ulcer. These last two criteria were implemented for the purposes of the USC-RLANRC gi ant study. I selected to enroll individuals over the age of 18, as I was focusing on the adult population. Deciding on length of time since injury was an issue requiring some deliberation. After a review of literature and consulting with a surgeon who was also a specialist in physiatry at RLANRC, I decided that having lived with spinal cord injury for at least one year would be a reasonable recruitment criterion. Most initial pressure ulcers occur within the first 78 year of being injured, and then risk tapers off in subsequent years 7 (Scott, 2002). All individuals who contacted me met the criteria set forth for participation. The Participants The participants were a dynamic group of remarkable individuals with a wide variety of interests. I learned a lot from these participants about the experiences of living with spinal cord injury, but I was also exposed to a variety of other experiences in the process of spending time engaged in occupations. For example, I attended the 2003 U.S. Open Wheelchair Tennis Tournament, sat in on a children's book club at a public library, at 4 nded an art opening, spent many evenings at Downtown Disney, visited historical California beach properties, and drove many thousands of miles to meet with participants in a wide array of other venues. These are just some examples of the types of experiences that I shared with participants in the process of conducting interviews. The reason that this aspect of the research was significant is because the lives of these participants were filled with rich and fascinating opportunities for occupation. It is difficult to reduce their stories into a brief introduction, thus I do so only for the purposes of describing the superficial demographics that represent these individuals. The stories of each of the participants are embedded in greater detail within the analyses extended in Chapters 4 - 7 of the dissertation. In order to maintain confidentiality to the greatest degree possible, all names used in this dissertation are * This does not account for repeat incidents of pressure ulcers. pseudonyms. Each participant selected their own pseudonym for the purposes of the study. However, for some participants, I later came to realize that these pseudonyms carried personal meaning or significance. Therefore I reassigned new pseudonyms for the final write-up of this dissertation. Certain specific locations or personally identifiable facts have been altered to protect the participants to the greatest possible degree from being recognized through their narratives. One woman, Angela, was initially enrolled but was later dropped from the study. Angela was a fascinating person with a very busy life and many stories to tell. It was perhaps because she was too busy with the repertoire of occupations in he^- life that she decided to not continue with interviews after the fourth month. Thus between the fourth and eleventh month of the study, Angela and I did not meet. However, we did maintain occasional telephone and e-mail contact. During the twelfth month of the study, Angela agreed to meet one more time. In total, 1 met with Angela for 6 interviews lasting approximately 8 hours; I also met with Angela on 3 other occasions for participant observation 8 . Ultimately, I felt that I did not have enough information to make accurate interpretations regarding Angela's story for this dissertation. There were several unanswered questions. Moreover, although Angela never explicitly withdrew from the study, her actions and implicit expressions had conveyed certain ambivalence about having her story be part of this dissertation. 8 These numbers are not reflected in the descriptive tally of interview/participant observation/transcription hours for this study, mentioned in the next section. 80 The remaining four participants consisted of three men and one woman, ranging in age between 28-50 years at the time of the study. The participants had different levels of spinal injuries, ranging from C5 to T6, and had been injured for different lengths of time, ranging from 9-28 years. The participants came from different ethnic backgrounds; three individuals identified themselves as Caucasian and one as Hispanic. Wesley Wesley was born in southern California during the mid 1950s and completed a college degree locally. Wesley injured his spine in a diving accident during college. He sustained an incomplete injury of the cervical spine. Wesley had lived with his spinal cord injury for about 28 years when I met him. Rosalyn Rosalyn was born during the 1970s and moved to California when she was young. She attended elementary and secondary school in California. Although Rosalyn never graduated from high school, she did complete her GED. She also took some college courses in an attempt to improve her job prospects. Rosalyn had not yet graduated frori high school when she injured her spine in an automobile accident. She sustained an incomplete lesion of her thoracic spine. Rosalyn had lived with her spinal cord injury for about 12 years when I met her. Sam Sam was born in southern California during the mid 1950s. Sam did not graduate from high school but did complete his GED while serving in the U.S. military. Sam took some college courses and other continuing education classes, but reported never having an interest in school. Sam injured his spine in a diving accident when he was in his twenties. He sustained a mixed incomplete/complete lesion of the cervical spine. Sam had lived with his spinal cord injury for about 22 years when I met him. Dylan Dylan was born in southern California during the early 1960s. Although he remembers moving several times when he was a child, on the account of his father's job, he mostly remembers growing up in California. Dylan graduated from college, and spent most of his career efforts in business and entrepreneurship. He injured his spine in an automobile accident when he was in his twenties, and sustained an incomplete lesion of the cervical spine. Dylan had lived with a spinal cord injury for about 15 years when I met him. Data Collection I used multiple audio digitally 9 recorded interviews and participant observation to analyze the experiences of participants in this study. In particular I attended to the construction and expression of identities through occupations in the context of everyday life. The four participants in this study participated in a total of 58 interviews over an 18-month period. The audio-recorded portion of each interview lasted for approximately 45-90 minutes depending on the participant and 9 An Olympus Voice-Trek DM-1 digital recording device was used. 82 the flow of the conversation, resulting in approximately 60 to 70 hours of interview time and 1,800 pages of transcription. I also spent at least 3 sessions with each participant engaging in occupations or simply "hanging out" with them as they went about their routine life. For instance, in addition to the events and occupations that I mentioned earlier, I also played tennis, joined a participant and a group of his friends for Friday night basketball games at a sports bar, shared lunch at a local Chinese restaurant, toured the beaches of Orange County, played billiards, went to the mall, and attended various disability expo shows. These were occupations that happened repeatedly and over a period of time. Hence, although an interview might have lasted for 60 minutes, I would typically spend an entire morning, afternoon, or evening with participants. For example, with Sam I would frequently conduct an interview from 11AM - 12:30PM and then have lunch together, often lasting until about 3:30PM; or with Wesley I would meet to play tennis on Saturday mornings followed by lunch and sometimes an interview after that, thus I would arrive at his home at 8:30AM and leave around 2PM. When Wesley and I played tennis, we met at his home and then we would take one car to the tennis courts. He would always drive. This combination of interviewing and hanging out allowed me to gain an in- depth understanding of the participant's perspectives, thus affording a more thorough and rich context in which to make interpretations. Furthermore, combining these different ethnographic techniques allowed for the elucidation of richness and certain social texture surrounding the participant's experiences that would not otherwise be 83 possible. I collected data at the participant's residence, work place, a public place, or some other agreed upon location, a flexibility that was critical to the qualitative research process (Seidman, 1998). Interviewing Process Interviewing is a useful way to access what people have to say about various topics of concern in a research endeavor (Seidman, 1998). The purpose of using interviews in qualitative research is not to test or evaluate hypotheses, but rather to gain an understanding about the research participants' experiences and the interpretations that he or she makes of those experiences (Seidman 1998). Furthermore, interviewing allows for experiences, actions, and reflections to be contextualized (Dey, 1993; Mishler, 1986; Seidman, 1998). However, not all interviews are the same, in that different ideological underpinnings tend to beget different styles and techniques. Depending on the interviewing style, it is possible to bring out varying aspects of an experience, the meaning attributed to the experience, or perhaps a more fluid series of experiences in the form of a story. The interview process in this study was two-fold in that I used both semi- structured and narrative interviews. 1 used in-depth semi-structured interviews to elicit responses to certain questions that I had formulated based on prior reading, as well as to clarify responses from previous interviews; I used narrative interviews to elicit storied accounts of events, experiences, and reflections. Narrative interviews allowed for more fluidity and a more reciprocal dynamic response between researcher and participant. As time went on and the content of my discussions with 84 each participant became increasingly more individualized in nature, 1 relied more heavily on the more open-ended narrative interviewing techniques. Moreover, I found that narrative interviewing allowed me to access more contexts through the stories that the participants told, emphasizing the nuances that I might have missed with more directed and structured questions. Even though I dichotomize the interviewing process for the purpose of clarity here, in actuality I went back and forth between the two types of interviewing techniques. After each interview I recorded observations, general impressions, descriptions of the setting where the interview took place, and any other thoughts that were pertinent to the interview. Depending on circumstances, this either occurred as an audio-recorded segment, as a hand-written note, or typed notation. Semi-Structured Interviews The nature of the initial semi-structured interviews allowed me to begin an interview with thematically guided topics about a repertoire of occupations. I inquired about past and present occupations, personal and family history, injury trajectories, experiences in rehabilitation and later the community, and perspectives on health 10 . During these interviews I also took time to establish rapport and trust. I also asked about more logistic matters such as where they grew up, what kinds of things they enjoyed as children, the l .vel of their spinal injuries, if they had gone to school, and if they worked. I asked questions such as: "Can you tell me about how 10 I had initially constructed a guide in order to obtain information about a certain set of questions (See Appendix C). 85 you spent your weekends before your injury?" or "What kinds of things did you most enjoy doing before you were injured?" Depending on the response I could continue to probe with questions such as: "Did you enjoy sports?" or "Did you typically like to hang out with friends?" This approach to interviewing allowed me to ask for more elaboration about particular topics as well as develop a sense of what the participant did or did not do in terms of occupations. 1 also relied on these types of semi- structured interviews to follow up on questions that I had come across from a narrative interview, or from other thoughts that had arisen for either the participant or myself. This use of multiple interviews with each participant over an extended period provided an opportunity to clarify ideas and thus contributed to the accuracy of my analysis. Narrative Interviews Narrative interviews allows for the participants to relate significant events in their life through stories. Embedded within these narratives are descriptions of the characters, relationships, emotions, motives behind actions, and events (Mattingly, 1998). The unique values of these narratives are the intricacies and personal insights that are woven through the story (Mattingly, 1998). Moreover, narrative interviews provide a venue for informants to provide accounts of experiences that lie together a number of different events (Bruner, 1986; Polkinghorne, 1988; Polkinghorne, 1995). There has been some debate about what constitutes narrative and if the stories told by participants in research endeavors are in fact narratives. Rather than untangling these varied perspectives, I have viewed the stories as narratives and my analytic concern has been about what is conveyed in the messages of these stories. Moreover, I have followed Mattingly (1998) on this matter in favor of a view that, "the issue is not what a story is, as some kind of text, but what a storytelling episode is - and does - as some kind of social act.. .To put the matter simply, stories are about someone trying to do something, and what happens to her and to others as a result " (p. 7). This perspective places an emphasis on events and action while also honoring the context in which this action takes place. Overall, the narrative interviews allowed me to hear about the participant's perspectives through storied accounts The stories allowed the participants to voice their own perceptions about events as well as provide reasons as to why they thought something happened or what circumstances led up to a particular event. During the process of collecting data, I adjusted my style in accordance with the participant's preferences. For instance, Sam would frequently say, "just ask and I'll tell you." Sam preferred that I ask specific questions as we began the interviews. However, I soon found that Sam then went into telling numerous stories, often 'ingential in terms of the themes. Thus with Sam I often introduced a theme and then allowed for Sam to share his thoughts in a storied form that often included a variety of stories about a variety of topics. Dylan on the other hand, preferred to begin interviews by sharing something that had iecently happened in his life. His life was full of stories. His stories were often very revealing and as 1 reflected upon many of his stories, I felt glad that he had shared because I would not have thought to a4c. Wesley for example, typically responded with brief answers and once in a while wob 'd engage in a more natural exchange during our interviews. Wesley preferred to "stay active." I realized that with Wesley, engaging in an occupation together was much more conducive to exploring various topics than sitting face to face in an interview like atmosphere. "Hanging Out" - Participant Observation Observations are another mode of information gathering and can yield interesting findings about the aesthetics of social practices as well as allow for the researcher to become more integrated into the background of the context in which the research is being conducted (Lofland & Lofland, 1995). Although observations alone do not allow for comprehensive accounts of what it is like for people as they experience certain events (Spencer et al. 5 1993), observations serve as a valuable complement to the interviewing process. As I began this study, I felt conflicted about the idea of "observing" the participants in this study, feeling as though this was patronizing and a highly reductionistic way to conceive of spending time with people. I use the terms "observation" and "hanging out" interchangeably to describe the time spent participating with the research informants, however I am not sure that these terms connote the level of "participation" or "occupation" that was transpiring during the time of hanging out. When I designed the data collection process for this study I planned for a rapport-building session to take place early in the study. This session was designed to occur around an occupation of he participant's choice, where we could interact in a natural way rather than the more traditional face-to-face interview. My reasoning for this was two-fold. First, I believed that sharing in the experience of an occupation would contribute to a deeper sense of rapport and would honor the kind of respect that I felt I owed each participant for his or her commitment to the study. Establishing trust and rapport between researcher and informant is vital to the data collection process and to the ultimate credibility of the analysis in qualitative work (Lawlor & Mattingly, 2001). Secondly, I was interested in applying the concept of occupation, not only as the focus of my analysis, but to the actual research method being implemented to explore occupation. Sharing in the occupational experiences seemed appealing to me in terms of serving as a mechanism for establishing rapport. Over the years, 1 heard stories from friends working in various corporate settings, about how companies used a variety of explicit as well as tacit practices to build trust and rapport within their corporate climate. These efforts often seemed very occupational in nature to me. In the literature, I have found examples of companies around the globe that use a variety of team building initiatives to strengthen the bond between employees through what 1 would call occupations (Kondo, 1990; Wenger, McDermott, & Snyder, 2002). These company-based initiatives are the explicit efforts to develop trusting relationships and better communication among members of a group(s). However, there is also a more tacit level of trust that develops among people when engaged in occupations that are not directly related to their work. In the corporate setting a lot of the critical rapport building is informally said to happen while, for example. having a drink after work or while playing golf. This idea prompted me to consider 89 honoring the power and value of shared ordinary occupations as a way of establishing rapport while simultaneously placing the occupations most central to the participants in this study into context. For example, for Rosalyn, sharing a meal was a valued and favored occupation. So for our second session we were supposed to meet for lunch at a local Thai restaurant that she frequented. However, Rosalyn called me about one hour before we were supposed to meet and said that her wheelchair had broken. She wondered if I would take her to the "wheelchair repair shop'' rather than have lunch. Due to the circumstances this interview did not turn out as originally planned but did contribute to establishing trust and respect. Eventually a few weeks later, Rosalyn and I were able to meet for lunch. This occupation session turned out to be an invaluable period of hanging out, as Rosalyn candidly conveyed a great degree of information about herself and her views on a variety of topics. I remember leaving the interview wondering if it was because of this shared occupation, because I did not have the recorder, because of timing, or some other reason that this particular session had seemed so rich in detail and so natural. I concluded that the combination of the favored occupation within a natural environment greatly contributed to this session. As occupational scientists, we find powerful meaning in the "doing," and in fact we value and even celebrate the most ordinary aspects of occupations (Florey, 1996). I believe that engaging in occupations together with participants in this study - perhaps what makes this an ethnographic study - was an invaluable source of "data collection." If in fact occupation is as central as I have advocated through the literature review of this dissertation as well as through the analyses presented in subsequent sections, then I suggest that it is also reasonable that occupation might have value in being the basis for a mutually respectful research relationship between researcher and participant. Because of the longitudinal nature of this study, I had the opportunity to hang out and participate with the participants in a variety of occupations through various seasons. At minimum, I observed at least two different types of events and occupations with each participant. First, I participated in occupations that participants perceived as healthy. Second, I participated in occupations that were found to be meaningful and contributing to a sense of identities. Because I sought to be involved with participants in various dimensions of their lives and as they engaged in occupations, I needed to be flexible with scheduling. We met during the mornings, afternoons, evenings, weekdays, weekends, in the community, and in homes. Sometimes I spent only one hour with a participant, although rarely, and on one occasion I spent 14 consecutive hours with a participant when we traveled to San Diego together. Overall, hanging out allowed me to gather information during both ordinary and momentous events as the participants actually engaged in occupations within various contexts (home, social community, hospital or rehabilitation setting, and/or special events among any others). These periods of hanging out allowed me to be a part of the participant's daily life. Written and verbal notations were made after each period of hanging out. My written notes were entered into my computer in 91 a Microsoft Word document. All materials were stored under a pseudonym and password-protected drive. Data Handling In this section I discuss the handling of data for this project, which was mostly done digitally. Handling and organization of digital data included data transfers and storage, logistics for interview transcription, as well as digital archiving of these materials. Although this added a layer of complexity, there were also benefits to this procedure. I used an Olympus Voice-Trek DM-1 digital device to record all audio portions of the interviews for this study. This digital device allowed for 5 hours of continuous recording, and stored the interviews in the form of an audio file". Upon the completion of each interview, these files were then downloaded from the recording device to an IBM 12 laptop computer via USB cable using the software, DSS Player Pro - Dictation Module, version 1.0.7 (Olympus, 1997-2001a). Each downloaded audio file was stored on the hard drive until it had been transcribed. I also transferred all audio files to a CD-ROM for the purposes of backing up material. All hard copies, including paper and digital media, resulting from computer files or audio material were stored with pseudonyms under lock and key. Audio material was transcribed on a Microsoft Windows compatible computer using an Olympus RS-23 Foot Switch for PC device and the software, DSS " All files were recorded and stored in .DSS format 12 International Business Machines. Inc 92 Player Pro - Transcription Module, Version 1.0.7 (Olympus, 1997-2001b). In the cases where someone other than myself transcribed interviews, two methods were used to securely transfer files. These methods consisted of either handing over a CD-ROM with files, or transferring files using the software, WS_FTP 5.08LE (Ipswitch, 1991-2004), to a password protected secure server housed at the Center for Health Professions at USC. The transcriber was sent a password and instructions on how to access the server in 2 separate e-mail messages. In order to maintain maximum security, files weie deleted from the server upon retrieval by the transcriber and passwords were changed between each upload/download transfer. This prevented a transcriber, or anyone with access to the transcriber's e-mail account, from re-entering the server once the files had been uploaded or downloaded. Every person who provided assistance with the handling of raw data material for this study signed a form agreeing to confidentiality. There were clear benefits to having digitally recorded interviews and field notes. First, the recording device was small and discrete, allowing for it to be less conspicuous. For one participant this was particularly significant, as she commented that she forgot about the recorder because it was "so small." Second, due to the recording capacity of the device there was no need to turn or change tapes during the interview. Hence, interviews were uninterrupted (by the recording device) and interview portions were not missed in segue between tape flipping. Third, the sound quality of digital recording with this particular device was superior to an alternative cassette-recording device that I had used previously. Fourth, the digital recording 93 format allowed for indexing. This meant that specific portions of an interview could be flagged or labeled, which enabled expedient searching of particular interview segments. As the volume of audio material accumulated, this function became especially valuable. Fifth, cassette tapes consume a lot of space and often are vulnerable to damage due to the inherent moving parts. Finally, the digital files allowed for ease of storage and transfer. This afforded unsurpassed efficiency and speed of transmitting materials between research associates and myself. Data Analysis In this section I will describe the analytic approach and procedures. Although I do so in a concrete sequence for the purpose of clarity, the actual process of data gathering and data analysis was recursive and non-linear. Overlapping interviews and observations with early transcribing and data analysis served to guide the direction of subsequent interviews, thus broadening, deepening, and strengthening the final analysis (Charmaz, 1983; Lincoln & Guba, 1985). The purposes of a qualitative inquiry, as in any research, is to describe and explain the ascertained information as well as interpret it in ways that make it comprehensible to the reader (Dey, 1993). By going beyond descriptions, the information is transformed through interpretations in order to yield fresh perspectives (Dey, 1993). I begin with outlining the procedures of transforming the oral interviews into texts suitable for analysis (Polkinghorne, 1995). Then I delineate the process and shifting in thinking that informed my final analysis. I will provide examples through this section, where it serves to clarify or support the methodological procedure. Transcription The transcription process for this study was multi-faceted, and can be classified into 3 groupings of transcription. These three groups were myself, a group of three students enrolled in a graduate seminar at USC, and a professional transcriber. All participants in this study consented to interview materials being handled and discussed within a research team, including the transcription of interviews by someone other than myself. During the initial 4 months of interviews, I personally transcribed 14 interviews or 16 hours of audio-recorded material. The first hour of interview materia'! required 11 hours of transcription. As I gained skill and improved my efficiency, 1 gradually required 8-9 hours of transcription per hour of audio material. Due to the length of time it took for me to transcribe interviews, 1 did not always have enough time to complete transcriptions between interviews. Thus, in order to maintain a certain focus during interviews, I kept a notepad with questions and themes that came up during interviews or of thoughts that I had between meeting participants. Beginning from the fifth month of study, I outsourced a portion of the transcription, however, I continued to transcribe interviews and completed 10 more transcriptions before the conclusion of the study. A professional transcriber 95 completed a total of 14 interviews over the course of the study, while 3 students enrolled in a graduate seminar 13 completed a total of 22 interviews. The graduate seminar was titled OT590 Directed Research Seminar' 4 and led by Dr. Jeanne Jackson and myself. The students enrolled in the seminar were in their second year of the entry-level masters program in occupational therapy. This course provided the students with an experience in the qualitative research process as well as a first-hand knowledge of some of the skills involved in managing and processing information gathered through interviews and participant observations. Specifically, each student was assigned the task of transcribing audio material for one research participant over a 4-month period. The directed research experience involved monthly discussions around the unfolding story of each participant, as well as a focused exploration of pertinent topics and emerging themes. Thematic topic areas included: occupations and identity, health perspectives, adaptation and transformation, and implications for occupational therapy. All audio materials were transcribed near verbatim, retaining pauses, laughter, and nuances of expressions through bracketed qualifiers. However, I opted to not retain repeated "ummm" and "ahhs." For example, the following segment, "Ummm, umm. I would say yes, ummm, you know, ummm, no supervision, you take the blueprint, you take the material, and you make it happen;" was transcribed as "Ummm, I would say yes, you know, no supervision, you take the blueprint, you !j My dissertation committee chair, Dr. Jeanne Jackson, and I designed this seminar during the 2002 Fall semester. 14 The seminar was offered during the 2003 Spring semester through the Department of Occupational Science and Occupational Therapy at University of Southern California. take the material, and you make it happen." Upon receiving transcripts that had been transcribed by the professional transcriber or the OT590 students, I checked all materials for accuracy. This involved listening to the recorded session while making sure that the text accurately reflected the recording. Moreover, I would add any notations reflecting expressions or significant events that occurred during the interview, but were not captured within the audio file. During this period I also noted thoughts that emerged regarding particular interviews by which I was perplexed. I would sometimes question the significance of particular events or contemplate potential mishaps that had arisen during the interviewing process. These thoughts were documented as memos throughout the research process. These types of memos allowed me to gain analytical distance from the data as well as strengthening my analysis (Strauss & Corbin, 1990). The Analytic Process I will now document the procedures used in carrying out my analysis, and the dilemma causing me to shift my analytic frame from thematic analysis to narrative analysis. 1 began analyzing the data, while still conducting and transcribing interviews, remaining immersed in relevant literature, as well as exploring concepts with my advisor and research groups. Initially I approached this process using a thematic analysis, "a process for encoding qualitative information" (Boyatzis, 1998, p. 4). Boyatzis (1998) writes that thematic analysis might be most useful early. I used the software program, Atlas.ti (Muhr, 1997), to organize and code my data. 97 Thematic Analysis Thematic analysis involves a systematic breaking down of the text into more manageable bits, classifying themes, and drawing connections between these bits and themes thereby illuminating intentions and meanings embedded in the human actions represented (Boyatzis, 1998; Dey, 1993). Through systematically tracing patterns and relationships within the data, the process of thematic analysis is about making sense out of qualitative information by observing, encoding, and making interpretations (Boyatzis, 1998). Relying on modified techniques of grounded theory, I took a hybrid approach to derive codes both inductively and deductively. In other words I depended on previously established theories within occupational science and other disciplines to guide coding (deductive), as well as generated codes from the raw data (inductive). The benefit of using a deductive approach was that it allowed me to draw from research already existing (Strauss and Corbin, 1990). On the other hand, the benefit of using an inductive approach was that it allowed for novel themes to emerge from the raw data in ways that had not been brought to surface before (Strauss and Corbin. 1990). In combining these approaches I aimed to benefit from the strengths of each. Coding Coding is the first step in beginning to analyze the text (Strauss and Corbin, 1990). Initial coding entailed dissecting and breaking the interview and observation material into manageable bits that were assigned a name. Codes captured phenomena in one or two words and were later applied to more segments of the text. I generated 52 codes, combining an approach of both inductive and deductive coding. For instance, the code Daily Routine was defined by such comments as: "Taking care of my daughter all day," "I usually try to get out for lunch, get out of the building and have a friend with me - usually go out for lunch everyday," and "Two hours in the morning and two hours in the night. Sometimes at night it [self- carej can take only an hour." The daily routines that participants told me about were occupational in nature and emerged from the data; initially, I was not sure how these routines would be significant. However, I found this code laden with ordinary occupations and thus felt that something important was being captured, ultimately these ideas did become tied to broader themes of constructing identities through occupations. I also used deductive coding, relying on prior theory. Based on my review of the literature, I found numerous accounts of misperceptions held by the nondisabled public, which seemed to have an impact upon identities of individual living with disabilities (Carrillo, Corbett, & Lewis, 1982). I created a code, Outside Perceptions After Injury, characterized by such comments as, "The reactions that you get from other people, you know, a turned head, or you hear kids, you know, "hey mom, what's wrong with him?" You know, you get a lot of that," "You're in the chair! Why should you try to look good when you're sitting in a wheelchair? That concept doesn't come across to nurses or professionals at that level [acute care hospital], I don't know why, but they think I should be wearing sweatpants or hospital pants," and "So I just met somebody [potential romantic partner] new, local, and their attitude is just so different towards me. So I am enjoying that." As I added codes I revisited previously coded transcr'pts, constantly going back and forth, looking for themes both within and across cases. I drew links between the broader research questions and the categories established through coding process. As I consolidated codes by characteristics and attributes (Strauss and Corbin, 1990), a process that may be likened to placing similar concepts under an umbrella, I began to feel that I was losing the richness of each participant's story. Three broad themes began to emerge from this process as I revisited data as well as returned to participants, clarifying points from previous interviews. These themes consisted of "I'm not much different," "Potentiality," and "Relationships." However, as I continued with this process, exploring emerging themes, and pondering how this fit into the broader narratives that the participants had shared with me, I became increasingly frustrated with an inability to capture the uniqueness and experiences of each participant's story, echoing a sentiment in the literature (Bailey & Jackson, 2002; Riessman, 1990). I found that I was losing the rich variability of interview content and diverse contexts in which I had spent time with participants. For instance, my interviews with Wesley many times followed a game o"f tennis; one time Wesley and I traveled to San Diego with one of his friends, spending 14 consecutive hours participating in a varied repertoire of occupations. Similarly, my interviews with Dylan varied in content from time to time, so much, that it was difficult to capture the richness of his narratives as I divided his stories of 100 disability, work, relationships, and leisure, into broader themes. Thus, I felt that the potency in some of the stories offered by participants' were too distinct to be captured ir a thematic code, or were lost as I searched and linked codes across cases. A Shift In The Analysis Instead, I felt that these stories could contribute to a more intriguing analysis about why participants acted in certain ways and how this contributed to their construction of identities. For instance, as Sam and I were leaving a restaurant after having lunch one day, he caught sight of a m?.n across the street and suddenly remarked, "See, that's why I don't hang out with disabled guys!" The discussion that ensued allowed me to explore this comment, which led to new insights that had not been immediately apparent, and that I felt could be better brought forth through creating a more coherent narrative from a conglomerate of rich data collected within different contexts over time. This led me to shift my analytic approach to a narrative inquiry, consistent with ethnographic research endeavors in health and social sciences (Bailey & Jackson, 2002; Lawlor & Mattingly, 2001; Mattingly, 1998; Mattingly & Lawlor, 2000). This type of ethnographic research concerns, "understanding how people live their lives in their sociocultural worlds" (Lawlor, 2003). Narrative Analysis I focused on the theme, "I'm not much different." The statement, "I'm not much different," begged the question, "Not much different than whom or what?," and "Why ?" A complexity, inherent in the experiences of living with a disability 101 and constructing identities against dominant social discourses, existed at the core of this question. Because narrative analyses are heavily based on researcher interpretations - and I needed to explain processes by synthesizing different stories - there were many stories I could have told. I began to construct coherent stories that could inform ongoing discourses pertaining to the construction of identities through occupations, making theoretical interpretations supported by extensive quotes representing the voices of the participants (Bailey & Jackson, 2002; Mishler. 1986; Riessman, 1990). Further reading confirmed that rather than locating thematic threads across cases, I was interested in synthesizing each participant's narratives in order to elucidate the process of how individuals constructed and expressed their identities within the contexts of their daily life over time (Mattingly & Lawlor, 2000). Crucial to this method is a recursive process of moving between data and the emerging themes (Polkinghome, 1995). I relied on a recursive process of moving between data, as well as reading relevant literature and reformulating interpretations based on this process. This was not a process of breaking apart stories in search of themes across cases, nor an endeavor in writing one person's life story, rather it was a process of constructing four stories based on the narrative analyses of the data collected through narrative interviews in this study. Polkinghome (1995) writes that a narrative analysis consists of the synthesizing and configuring of qualitative data, into a coherent argument that is of scholarly interest, lending itself toward the development of a particular plot. The 102 processes of constructing and expressing identities through occupations after a spinal cod injury were complex, requiring a thorough exploration and an account of personal agency as well as a temporal linking of life events within the social contexts. By focusing on different aspects of this process through a series of four cases, I felt that I was able to provide a more valuable and comprehensive analysis of the overall subject matter (Seidman, 1991). Specifically, through a dialogue with Holland et al. (1998), each story brings out different themes relating to the broader topic relating to the construction of identities. Polkinghorne (1995) writes, "The final story must fit the data while at the same time bringing an order and meaningfulness that is not apparent in the data themselves" (p. 16). Rigor of Method In any field scholarly research endeavor, the problem determines the type of approach used to answer the research question(s) at hand (Ottenbacher, 1992; Seidman, 1998). As I have delineated throughout this chapter, the research problem in this study was exploratory in nature, and the data were gathered longitudinally through interviews and participant observations. Lased on the research problem and the type of data analyzed in this dissertation, a qualitative research approach was most appropriate. Because qualitative research includes a broad mix of methods, it is necessary to examine the quality of the research design. This evaluation of the rigor of the research method is a critical process to assure the credibility and accuracy (Agar, 1986; Krefting, 1991) as well as trustworthiness (Guba, 1981) ofthe research 103 design and subsequent findings. I review three aspects of evaluating the rigor of the method. First, Guba (1981) identified a model of trustworthiness in which he delineated four aspects pivotal to a higher standard in reporting on data analysis, and also in understanding the results of resulting reports. Trustworthiness in general refers to the recording and reporting of information in such a manner that it is positively recognizable to the informant (Lincoln and Guba, 1985). Through credibility, Lincoln and Guba (1985) suggest that qualitative researchers report on, as closely as possible, the lived experiences as perceived by the informants. Since it is assumed within the paradigm of qualitative research that there are multiple realities within the human realm, it is the researcher's responsibility to accurately illustrate as many as possible or all of these realities (Krefting, 1991). Polkinghorne (2001) stated that a qualitative claim is valid when the reader is convinced that the interpretations accurately reflect the meaning and intentions depicted within the raw data (text). Second, people are not static beings whose experiences remain unchanged over time, thus the findings of this type of research project are specific to persons involved at a particular time (Guba, 1981). Individual perspectives uncovered through the interviewing processes often deviate from a so-called "norm," and it is precisely these perspectives that yield the greatest value and support for using qualitative methods. These perspectives are critical and considered highly important in qualitative research (Krefting. 1991). More importantly, when the research 104 findings are sufficiently grounded in data, and the reporting of these findings are rich in description, the reader might find him or herself able to make connections between his or her own encounters and the stories presented (Geertz, 1973; Seidman, 1998). This strengthens the argument and might help the reader discover new dimensions to the way he or she applies new strategies to his or her own life. This allows for the reader to determine how well the findings relate to him or her based on the context, persons involved, timing, among other elements <?f f he original research (Lincoln and Guba, 1985). Thus the aim is compel the reader into being able to make connections between individual experiences (Seidman, 1998), or what Guba (1981) has referred to as transferability. Third, the trustworthiness of qualitative research is enhanced by the closeness of the researcher and participant (Guba, 1981; Lawlor and Mattingly, 2001). In other words, conducting interviews and partic ipant observation as part of a qualitative research is deeply reliant on rapport building and mutually respectful discussions surrounding the research topic(s) in question. I believe that when a person enters into dialogue with another person, each person always enters the dialogue with a certain set of preconceptions that have developed through past life experiences and within some cultural context. These preconceptions, however subtle, become part of and influence people's daily interactions. With some cynicism I am aware that in a research relationship, the expert researcher should gather and review information obtained from the research subject, with his or her utmost objectivity and thereby uphold one of the most cardinal tenets of scientific research. In other words, the 105 researcher should avoid letting her or his subjectivity permeate the data or the interpretations of the data to the greatest possible extent. I emphasize the terms "expert" and "subject" with some degree of sarcasm because, ironically, I as the researcher, am, as a matter of subject, interested in the study participant's (subject's) expertise and knowledge. I take the position that however objective I attempt to be in my qualitative research endeavor, a certain degree of my subjectivity is likely to permeate both procedures of both data collection and data analysis. This subjectivity is a reality of human nature and it serves as a foundation for establishing rapport and trust with participants in the field. Furthermore, the types of encounters made possible by prolonged engagement or immersion into the settings where research participants carry out their lives, make it possible to report on such non-verbalized phenomena as tacit knowledge, rituals, and daily practices. These aspects of trust and prolonged engagement serve to strengthen the outcomes of qualitative research. More concretely, in this study I used several strategies and techniques to establish rigor of the study. First, by providing in-depth accounts of stories shared by participants in this study, including both their words and my interpretations, I attempted to enhance transferability through the density of the stories (Krefting, 1991). Second, I collected data through both interviews and observations (triangulation of data methods), as weil as made use of a research team with varied expertise to discuss emerging themes and segments of participant narratives (triangulation of investigators) (Krefting, 1991). Running these research meetings (OT59Q Seminar) allowed for me to hear alternative views to my own thinking. 106 Moreover, these seminars served as part of my mentorship in qualitative research. Third, holding such a seminar series as well as individual meetings with my research advisor to review research progress also served to increase the dependability and confirmability of the study (Krefting, 1991). Lastly, through prolonged engagement with the participants over an 18-month period as well as by carrying out member checking, I improved credibility of the study. Member checking consisted of reviewing responses and interpretations of interviews with the participant to allow for clarification and assure maximal accuracy (Krefting, 1991). Ethical Responsibility Sharing perspectives about personal experiences through qualitative research endeavors such as this, carry with it both benefits and risks. Participation in this study meant revealing in-depth details about an array of personal matters, sometimes intimate, sometimes relating to family members, and always embedded in the circumstances surrounding everyday life. Because of this level of depth, participants can have their voices heard, not as one four hundredth of large quantitative data set, but as a voice deeply embedded within the richness of specific circumstances, processes, and social contexts. On the other hand, the level of this detail might provide enough information for a reader to guess who is being referred to in a text. Moreover, in this study there are only five participants thus linking each individual very closely to this particular project. For participants who wanted to have their voices heard and who not feel ambivalent by the possibility of their identities being 107 known, embraced the idea of sharing their perspectives without signs of hesitation. Conversely, participants who did not want their stories shared with others occasionally expressed hesitation, and would mention to me that they did not want certain aspects of their narrative in a published paper. I took all precautions available to minimize exposure and kept all materials obtained through this research project confidential from people outside the research team. However, given the nature of reporting on qualitative research anonymity cannot be promised. In accordance with the principles of qualitative inquiry, participants were informed about this challenge albeit I was committed to ethical conduct. I maintained the research materials confidential through the assignment of pseudonyms, altering locations of certain events, handling all data and research materials securely, and storing hard copies of any transcripts and digital media under lock and key. I also obtained informed consent from each participant, in accordance with the rules and regulations of the University of Southern California Institutional Review Board (USCIRB) (see Appendix A). The informed consent form was developed in accordance with the requirements set forth by the USCIRB, the institutional review board of Los Amigos Reseach and Education Institute (LAREI), and principles from Seidman (1998). I informed participants that by not publicly associating themselves with my study, they would decrease the risk of their stories being recognized as theirs. I also left it up to each participant to decide how they wanted to introduce me to family, friends, and others within their social network. In most cases, the participants in this 108 study referred to me as "a friend from USC," "a grad student from USC," or "a fellow from USC." On occasion, friends of participants would ask about me at social gatherings. One participant's response sums up the general response of all participants: "Oh, I'm helping him out with one of his projects for school." Thus, in respecting the participant's privacy and attempting to remain as discrete as possible, I tried to blend into the group as the "guy from USC" who was receiving assistance with his project. About the Researcher I am a male of European and Asian decent, born in Sweden and raised in both Sweden and Japan. I am also unmarried and have no children. Although I was initially somewhat unaware of the influence that these factors could have in the research process, I soon reflected upon and learned that these aspects of who I was played a role in the research process. For instance, as I was leaving after the second interview Rosalyn asked, "If you don't mind me asking, what are you?" I told her that I was half Japanese and half Swedish. To this, Rosalyn responded, "I knew it, I've got some half Asian friends." Based on the subsequent dialogue, I understood what Rosalyn had intended in asking her question. First, she had suspected that I was half Asian and on a superficial level probably wanted to confirm her guess, but on a deeper level she wanted to find a personal point at which to connect. The discussion ensued included topics of travel, food, and culture. Similarly, Sam asked about my "ethnicity," and after learning of my Japanese side we began talking about 109 his time in Japan and his love for "rice." In the case of all participants, I was intrigued by how my "Asian" half was the part of me with which they generally identified. I was also made acutely aware that my inexperience on a personal level with children resulted in my initial lack of insight into Rosalyn's life and her narratives. Rosalyn's life revolved around occupations of mothering, something with which I was desperately unfamiliar. During an OT590 seminar, one of the students who had been transcribing Rosalyn's interviews commented that I might try to inquire more about Rosalyn's relationship with her daughter. It was a simple observation, but one that turned out to be very significant in the analysis. After rethinking my interactions with Rosalyn and re-listening to interviews, I realized how I had missed the degree to which mothering had been central to her. I had not picked up on certain relevant and important details about mothering or parenting, I reasoned, from my own lack of familiarity with the subject. In this regard I am greatly indebted to the seminar students, my peer collaborators, and my advisor for their insights as I attempted to compensate by reading, learning, and being a better listener. Second, prior to this study my research experiences were mostly associated with projects relying on quantitative methods. Although my novice status as a qualitative researcher might be seen as a drawback, I received mentorship throughout this project from researchers with a long history of experience in using qualitative methods. I also completed coursework in qualitative research methods and analysis. 110 endeavored in my own reading on various perspectives, and ran a seminar together with my advisor to ensure the quality of the analysis. Third, although I have worked as an occupational therapist for several years, I do not have any extensive experiences with working in spinal cord injury rehabilitation. I view this aspect of my background as positive within the realm of this project, as it helped in reducing any preconceived notions specifically pertaining to the lives of people living with spinal cord injury. For example, I had little knowledge about aspects concerning environment control units, the latest low- technological equipment such as wheelchairs, cushions, and mattresses, or even techniques and strategies to improve independence with self-care. Therefore, both out of need and curiosity I found myself prone to exploring issues that someone familiar with spinal cord injury rehabilitation might otherwise have taken for granted. Thus allowed for me to hear about the experiences in many of the most ordinary occupations in these participant's lives. Moreover, the participants knew that I did not have expertise in spinal cord rehabilitation, thus being more inclined to show me aspects of their daily life that they might not otherwise have shared. I found that many of the strategies and aspects of daily living to which I was privy, were aspects that participants explicitly said were not "things I would tell my therapist." Finally, my biases and perspectives on occupation are influenced by my background as an occupational therapist and by my ongoing studies as a doctoral student in occupational science. Although I did have ideas about the relationship Ill between occupation and identities, I acknowledged that these were my viewpoints and conceded that the informants might not necessarily share this perspective. The benefit of having an understanding about the power of occupation in the context of people's lives far outweighs the drawbacks in this case. Although my ideas about occupation helped guide my questions during this study, I remained open to the perspectives of the participants' viewpoints and new ways in which to understand these myriad perspectives. 112 CHAPTER 4 Wesley's Story Wesley fractured his neck in a diving accident and consequently sustained a spinal cord injury when he was in his teens. His story, however, is not about the "disability" that resulted from his diving accident, but rather about staying active, and in his words, "being an equal." What Wesley shares today stems from a unique culmination of many years living with and adjusting to spinal cord injury. Wesley focuses on opportunities where his abilities allow him to stay active. His story reveals how being independent and active is about being able to perform a wide range of occupations. Although Wesley's narratives gleam with accomplishment, his story should not be taken as one that comes easily or one that typifies the process of adjusting to spinal cord injury. Nor should it be assumed that Wesley's story is about triumph. Rather, Wesley's story illustrates how a traumatic spinal cord injury can displace a person's sense of identities, even if temporarily, and how occupations can serve as an organizing mechanism of coherence for recreating identities within socially constructed realms. In this chapter, I draw on disability studies and a practice theory of self and identity (Holland et al.. 1998) to explicate how, in Wesley's case, identities are reconstructed through occupations situated within such worlds as tennis and paid employment. It is by means of the intricate social and cultural dimensions made possible through occupations in these figured worlds, as well as the actual 113 participation in occupations, that Wesley is able to realize and express continuing and emerging identities. Before focusing on the more theoretical analysis, however, I will take a moment to introduce briefly, Wesley's social history as well as the events before and after his injury. "I Was The First One Who Tried It" Wesley recalls that it was in the early 1970s when he looked out over the bridge and took a dive that led to his accident, a fracture of the C6-C7 vertebrae. Wesley had just returned from a weekend at Yosemite National Park, where he had been camping with his brothers and some friends. Wesley was feeling rejuvenated and confident about himself. In his elated state, with feelings of invincibility, Wesley, his brother William, and his friend Darin decided to cove dive. This was not the first time that Wesley had been cove diving; in fact, it was a favored occupation of his. During their cove exploration, Wesley and William discovered a bridge suspended over a stream of water. Although the moments that followed the discovery of this bridge would change Wesley's life in many ways, he described the event casually: We weren't thinking, we were 19 and kinda showing off, and thinking nothing we do would be wrong or bad and just.. .well, I was the first one who tried it, just showing off, and didn't check the depth of the water. Hit the bottom and broke my neck. The event remained vivid in Wesley's memory and he said that he never lost consciousness. He felt lucky that both William and Darin were there to rescue him. William witnessed the dive from the bridge and rushed down to pull Wesley out of 114 the water. William laid Wesley on a ber 01 rocks next to the stream. By this time, Darin had made it down the slope from the other side of the bridge. Since Darin was training to be a paramedic at the time, Wesley said, "He knew what to do." Darin made an attempt at stabilizing Wesley's neck. While Darin was tending to Wesley, William went to call for help. Darin and William then tried to keep Wesley awake until the ambulance arrived. Wesley had little knowledge about what to expect from the recovery process after a spinal cord injury. He trusted in the expertise of the rehabilitation staff and accepted that he should follow the suggestions they imparted. The rehabilitation setting was a protected environment where life was highly structured, where failure was always reframed in a positive light, and where staff inflated egos for the purpose of boosting morale and confidence. Wesley did not think much about the effect that his spinal cord injury would have on his participation in more complex occupations such as work or leisure after discharge from the hospital. Although Wesley understood that returning to the life he had lived prior to his accident seemed unlikely, he had little other concept about what life could be like when returning home. "Back Into The Real World' After 6 months of rehabilitation, Wesley returned to his parent's home, where he had been living prior to his accident. Although Wesley had learned a variety of skills durinp rehabilitation, when he returned home there were many elements of transitioning from rehab to the community that were a challenge. Re-integration into 115 the real world meant facing the reality of misperceptions by the public and coping with threats to independence posed by the outside environment. Wesley reflected upon this transition: When you're in rehab, you're in a very protected environment. There are other people in chairs there, or there are other people with more physical disabilities than you, and the nurses are there taking care of you, and they feed you. It's a very protected environment even though you're slowly getting back in, maybe dressing yourself and transferring into a chair, and coming home on weekends and all that. It's a very protected environment...and suddenly here I am thrown back into the real world. Although Wesley did not know about his parents' plans when he was discharged from the rehabilitation unit, upon arriving at his parents' home he soon found out that he would be starting school immediately. According to Wesley, this was his parents' decision and they did all the planning. Wesley's parents wanted to impress upon him that they would provide any assistance that he needed but that they would not let him withdraw into a room at the back of the house. According to Wesley, his parents recognized that the future probably seemed like a void containing an overwhelming number of unknowns and that Wesley was at a point in his life when he needed their guidance. Wesley's parents created an atmosphere in which he felt compelled to return to the community as an active participant: WTien I came home in February from six months of rehab, I had no idea of what I was going to do. I had no idea! The parents did, and I'm glad they did. I love them for it. 'Cause I came home on the weekend and they said, "You're starting school on Monday." It freaked me out. 116 Wesley ended up completing an Associates degree, and later a Bachelor's degree from a different university. Toward the end of college, Wesley was feeling trapped and constrained by the limits of living at home. He and his younger brother William decided to buy a house together and move out. Since William was attending the same university and serving as Wesley's caregiver, daily living was a smooth transition and the commute to school got easier. Over time, Wesley's desire for his own home and a somewhat more independent lifestyle placed in contrast to the perceptions held by the public - that of a person requiring personal care and financial assistance - led Wesley to further reshape his sense of identities, demanding to be seen as an "equal" and "able" person living with a spinal cord injury. It was many years later when I met Wesley for the first time. Disability In An American Workplace: "Don't Treat Me Any Different" Over the course of my initial months of interviews with Wesley, I quickly found myself forgetting about Wesley's disability. Wesley generally showed up to our interviews in business casual attire. Our conversations were always peppered with sports news and chat about recent or upcoming trips that Wesley was contemplating. We shared many meals together, sometimes at a sports bar and other times at a restaurant. Sitting at a table, sharing a meal, exchanging conversation, and cheering for the Los Angeles Lakers were certainly not moments that I associated with a stereotype of "disability." However, these were the critical elements involved in hanging out on a Friday evening with Wesley, putting into context the experiences that he shared with me during interviews. Moreover, it was during these moments 117 when I participated in occupations with Wesley that I began to really understand the importance of social context and the associated symbolic meaning that this carried for Wesley's engagement in occupations. At the conclusion of my sixth interview with Wesley, a significant moment occurred in our research relationship. It had been about 1 month since I met Wesley when I first mentioned to him that I wanted to visit and spend the morning with him at his workplace. Since we hadn't decided on a definite time, the idea seemed to linger on without commitment over the course of the next two interviews. One evening when I had already turned off the recorder and was gathering my papers from the kitchen table. I asked Wesley more directly when I might be able to come see him at his job. At this point, Wesley appeared somewhat conflicted by my persistence in wanting to observe him at work. While avoiding eye contact, he told me that he didn't think it was going to work out. I was silent, waiting for Wesley to continue. During the brief moment of silence, I felt my stomach tighten as I feared that Wesley might tell me that I had somehow offended him or that he was withdrawing from the study. In a way, I should have had no reason to feel anxious, but I knew that I had been pushing Wesley to share his thoughts and experiences regarding disability on a deeper level and as a consequence possibly alienating him. During those intense interviews, I had especially felt as though Wesley was distancing himself. Wesley gave me two reasons why he didn't want me to visit his workplace. First, due to company regulations, he would need to obtain security clearance for me. 118 Second, and more importantly within the context of this study, Wesley questioned what I could learn from observing him at work. On a cognitive level, Wesley knew that I wanted to see him at his office because it would allow me to put his narrative into context and to understand more fully aspects of his daily life, especially aspects that he had come to take for granted. Despite this general understanding, Wesley still felt that there was nothing that I could observe him do that would be any different from watching another manager. Wesley's response struck me as defensive and although I did not know why at the time, I sensed an increasing tension and resistance to my interviewing tactics. What was absolutely clear was that I would not be interviewing or observing Wesley at work. As the subsequent interviews unfolded, 1 focused on trying to understand what Wesley really wanted me to know about him and spent less time trying to guide him along with my preconceived questions. I began to analyze and reflect upon my interviews with Wesley. It became clear to me that for Wesley, having me observe him at work would require him to publicly acknowledge that he was being "studied," in some way being objectified in an academic endeavor. I remembered what Wesley had told me earlier: When I am trying to prove myself to others I guess, you want to be treated equally as others. Umm...that's all I'm saying...I'm in a chair but I don't want you to treat me any different from anybody else. Wesley had spent many years "proving himself' at work and to some degree he might have felt as though he was still proving himself. A researcher visiting Wesley 119 at work because of Wesley's spinal cord injury would undermine Wesley's position at his workplace. Not only would I be treating him differently, but also by highlighting his disability, he would potentially position himself to be treated differently by others. What should have been clear to me was how much I was approaching my questions from a perspective rooted in a somewhat medical conception 15 , albeit socially informed. I had been asking questions about how Wesley injured his spine, how he viewed health, what types of medical complications if any he had experienced as a result of his spinal cord injury, among other discussions about his family and the types of things he enjoyed doing. My approach at trying to access his experience of living with a spinal cord injury - in a qualitative research manner - was being overshadowed by my falling back on an interviewing style seemingly rooted in a world of clinical sciences. I realized that I had to rethink the manner in which I had approached the interviews. It was a qualitative learning experience for me, and one that proved to be beneficial. As I stepped back to ponder the events of our research relationship and the meaning behind what Wesley was expressing to me, I began to understand Wesley's perspective within a complicated web of disability. The issues surrounding work and disability have a complicated history in North America. Only 30 years ago, scholars of disability policy wrote, l: See Chapter 2. From the perspective of the medical-clinical conception, disability has to do with a person's inability to perform certain functions due to some inherent deficit in mental, physical, or emotional capacity. In considering this model in its most fundamental form, there is an apparent neglect for the possibility that the general environment or attitudes of the "non-disabled" community may partially be responsible for the disabling circumstances (Higgins, 1992). 120 "Architectural, transportation, educational, attitudinal, and legal barriers combine with awesome force to deny a majority of disabled adults the opportunity to obtain work commensurate with their abilities and interests" (Bowe, 1978, p. 163). As time passed and as an increasing diversity of perspectives regarding disability evolved, more complex sets of arguments were brought forth. Within this complexity existed a sort of ambivalence toward people with disabilities in the context of work: Myths surrounding disability persist today, leaving many people - including top decision makers - with false and stereotyped notions of what disabled persons can and cannot do for themselves. Once a person becomes disabled, business people often view the person's incapacity as if it meant the individual were unable to work at all. (Rogers, 1987, p. 118) Wesley was of the impression that people with disabilities can and should work, even though, "Most nondisabled people resisted the idea that disabled people could work, learn, or have families" (Holms, 2001, p. 27). Thus, it was in face of multi- faceted barriers to education and gainful employment that Wesley successfully negotiated a college degree and a desirable job that matched his skills and interests. The company had grown since Wesley first joined. Along with company growth, Wesley had accepted promotions and a number of opportunities for career development. It was clear that Wesley had achieved much success in his career, but it was equally clear that his accomplishments had materialized despite many environmental challenges. As I reflected, I began to understand Wesley as someone positioned as a manager within a world where disability intensified the obstacles to success to a degree I had not initially recognized. At work, there was no longer any 121 ambivalence about whether Wesley could perform his job or not. Wesley was not marginally positioned as someone unable, but rather enjoyed a level of respect granted to him as a competent manager. It had taken many years for Wesley to earn and build this respect where he worked at Caliwestech. Caliwestech: Work As A Figured World At Caliwestech, employees work as a team to provide support for computer hardware and software for major American corporations. Some employees answer the phone, some create and analyze computer programs, while others oversee and manage day-to-day operations. Tokens of recognition are granted in the form of salaries, time off, and or designated space within the company. For Wesley, Caliwestech is, among many things, a place where certain acts are carried out, a world in which certain actions carry particular significance, and a realm in which aspects of self-identities are constructed and expressed. Through our discussions, e- mail exchange, and Wesley's stories, 1 began to see Caliwestech as a figured world. As Holland et al. (1998) assert, "A figured world is peopled by the figures, characters, and types who carry out its tasks and who also have styles of interacting within, distinguishable perspectives on, and orientations toward it" (p. 51). For Wesley, the figured world of employment in which he is a character is defined within the boundaries of a particular space and during relatively regular and predictable time periods. Artifacts such as computers, telephones, and offices not only serve as physicalities - tools that make the job possible - but also serve as symbolic tokens of 122 positioning within this figured world. These are elements that provide a framework of meaning. An employee workspace at Caliwestech might be a cubicle, a closed-off corner area, or an office with a door. For Wesley, having an office with a door served as a symbol of privilege within the company. When Wesley and I discussed his workplace, he mentioned that his office was in a "pretty large building." He also gave me the name of the city in which the company was located, signaling the company's financial viability and success. As we began to discuss more about Wesley's workspace, he said: Finally gave me a real nice larger office with a door where 1 can kind of close things off, because I have a lot of teleconferences. I needed the privacy and it's a closed office so other people didn't have to hear. I have a computer that's set up in front and do a lot of tracking and a lot of e-mails, and a lot of different products I support, so I'm going to a lot of status meetings, keeping up with old products and running new products. When Wesley said that they "finally gave me a real nice larger office," the term "finally" in this context connotes a sense of "deserving," as well as something that is "conclusive." There is an implicit desirability about having an office, but also about having a "larger" office and one "with a door." Wesley says that he needs privacy, not because he wants to talk about personal matters, but because of work-related "teleconferences." In saying, "other people don't have to hear," it is possible to view Wesley as being sensitive to the needs of others and expressing consideration for them by trying not to disturb. However, given Wesley's position as a manager 123 within the company, his statement is more convincingly interpreted to imply a certain social boundary between those having access to, and those not having access to, certain privileged knowledge within this particular figured world Wesley has the ability and authority to open or close his office door, effectively allowing for his conversation to be more or less accessible to others. Moreover, a computer is an artifact within the realm of Caliwestech, used for sophisticated computational tasks as well as more ordinary tasks such as sending and receiving e-mail for the purposes of communication. Depending on security clearance, however, the computer inadvertently also serves as a gateway into more or less privileged cyber-territory. For instance, a manager can control the distribution of e-mail memos to a particular division, whereas a rank-and-file staff member only has the receiving right. Whereas a staff member inputs her or his password and accesses a customer file pertaining to a current case, the manager's password has added privileges including not only customer files, but also personnel files, including employee time logs and salary information. Within cyber-territory, symbols of power represented by passwords and virtual locks apply in the same way as material spaces, rooms, and door locks in the physical world. The computer serves as a kind of gateway, not neutral, but imbued with possibilities that are readily transformable according to the privileges inherent to its user. Within the world of Caliwestech, Wesley is not only afforded a prestigious address, an office with a door, and access to by way of passwords to virtual and physical spaces, but he is also afforded the freedom to exercise a certain autonomy in 124 roaming between spaces. Wesley explains that when he breaks for lunch, he tends to go out with a friend from work or occasionally meets friends from outside of work. When I asked Wesley about what lunch is like and if the company is conveniently located to restaurants, he replied: I usually try to get out for lunch, get out of the building and have a friend with me, usually go out for lunch everyday. It's nice to get out of the office. It's nice because I'm not on the clock. I'm salaried, so if things aren't really tied up or bad I can stay out for an hour and a half or two. Wesley says that he is salaried and that it's nice because he is "not on the clock," indicating for him a certain amount of autonomy - greater flexibility in his schedule during the day. In addition to the privileges of being able to leave the office for lunch everyday, Wesley also takes extended time off between projects during which he travels to Las Vegas or takes a cruise. In fact during the time that I interviewed Wesley, he traveled to Las Vegas twice, Florida once, and went on a Caribbean cruise. Moreover, Wesley enjoys financial circumstances that allow him to travel in this manner as well as be a homeowner and drive a luxury car. This is a lifestyle for which Wesley works hard, putting in long hours and occasionally working more than 12-hour days. Sometimes he works late covering for another manager. For Wesley, work means responsibility as well as autonomy for his decisions and actions. Caliwestech: Symbols Of Power And Privilege At Work Within the figured world of Caliwestech. Wesley is constructing an identity figured along the storyline of the Caliwestech culture. In other words, within 125 Caliwestech there are certain acts and characters that create the culture of the company. What gives meaning to these characters and their actions is the storyline that serves as the backbone to the company culture. Identities form in these figured worlds through the day-to-day activities undertaken In their name. Neophytes are recruited into and gain perspective on such practices and come to identify themselves as actors of more or less influence, more or less privilege, and more or less power in these worlds. (Holland et al., 1998, p. 60) Wesley is a manager who sits in an office with a door. On a daily basis, he uses e- mail, attends meetings, learns about different products, tracks problems, and attends to conference calls, among other tasks. These are spaces and acts defined along a certain storyline about what it means to be a manager at Caliwestech, subsequently making the "figuring" of this world and its characters possible. However, while simultaneously "figuring" his identity within this world, Wesley is also "positioning" himself, an aspect of identities having to do with "position relative to socially identified others, one's sense of social place, and entitlement" (Holland et al., 1998, p. 125). This is a concept that I will detail more fully in the next chapter. For the purposes of this chapter however, Holland et al. (1998) differentiate between what they refer to as figured and positional identities l6 : Positional identities have to do with the day-to-day and on the ground relations of power, deference and entitlement, social affiliation and distance - with the social-interactional, social-relational structures of the lived world. Narrativized or figurative identities, in Also see Chapter 2 126 contrast, have to do with the stories, acts, and characters that make the world a cultural world, (p. 127) Within Caliwestech, Wesley is afforded respect for the abilities he has shown on the job over a period of many years. This is an aspect of Wesley's identity that is not only figured as a manager within Caliwestech but also positioned along the continuum of a hierarchy. My intention is to draw upon Wesley's perspective in order to situate him as a character within this figured world. Within this world of employment, having an office, being able to access privacy, and having flexibility to leave work for lunch daily, sometimes for an extended period, are symbols of success. It represents where Wesley is positioned in the company hierarchy. But it also provides a socially constructed context in which Wesley can express aspects of his identity such as independence, authority, confidence, and competence - someone who has earned access to opportunities allowing him to move up in the corporate hierarchy. Wesley works tirelessly to negotiate occupations at work around achieving high goals, not just by his own standards, but also by the standards of those around him. These occupations are imbued with symbolic privileges because of the social context in which Wesley carries out these acts. Wesley does not expect less of himself because he uses a wheelchair, nor does he want others to lower their expectations of him for any reason. This seems to be an especially salient point within the context of work. Being studied as a person with a disability for Wesley is acceptable to the extent that it emphasizes his abilities to engage in everyday life. 127 Being studied within his work environment, however, implies for Wesley that I may doubt his abilities or question how he functions, as if to say that I don't think his work achievements are possible - even though these were not my intentions. Moreover, having to openly acknowledge to his colleagues that he is in a study for individuals living with spinal cord injury immediately foregrounds his disability and exposes him to the possibility of others seeing him as "negatively different" rather tlran "positively similar," seeing him for his disability rather than ability. Having his disability brought to the surface at work would accomplish the very opposite of what Wesley has sought and struggled to achieve over the last 20 years. Thus, Wesley's hesitation with regard to having me visit him in his workplace becomes a clear threat to the position that he is afforded at Caliwestech. Holland et al. write about such a breach within the context of a work environment, albe<t issues of gender relations in the work place confound their example. In the Holland et al. (1998) case, the general manager (female) enters the office of the automotive parts manager (male). As she cio~es the door, she sees a large poster of a bikini-clad model pinned to the back cf the door. In this moment, the general manager finds her authority diminished by the sexual objectification of the woman on the poster. The sexual nature of the poster introduces a breach in her authority as a manager and in the figured world of work, instead displacing her into what Holland et al. (1998) call a figured realm of romance. In this example, the owner of the poster probably intends no harm or insult to the general manager: at least that is one of Holland et al.'s (1998) interpretations. In fact the poster is even tucked away on the back of the door. Yet it is what the poster represents within the context of work that serves as a source for making this female general manager feel derided. In the case of the general manager, the slight to her position is deeply felt within her, but not immediately or necessarily from others in her figured world. My visiting Wesley at work would introduce a breach to his position as a manager within the context of Caliwestech, not only felt within Wesley, but also from the collective others populating the social context of his unit. iMy presence would displace Wesley's identities associated with being a manager at Caliwestech to that of disabled individual, someone v, ho participates in "disability" research studies. The figured world of Caliwestech is one realm in which Wesley spends a large part of his time and energies. With regard to Caliwestech, my focus has been on the dynamics of company culture to situate such work-related occupations as teleconferencing, computing, and going to lunch. In this context, objects and artifacts such . s office spaces, cyberspace, computers, and lunchtime travel took on particular meaning having to do with the storylines of privilege afforded to the relevant characters in this world. Moreover, the relevance of my inability to visit Wesley at work is presented against a backdrop of disability discourse in America. Disability in the workplace is not neutral for Wesley, but rather something about which he maintains certain vigilance. In the following section, I direct my attention to another aspect of figured worlds, namely the shifting into and out of figured worlds, and moreover how artifacts can serve as a mechanism by which to unlock 129 these worlds. My focus remains on how Wesley goes about forming identities through his negotiation of occupations between these social contexts. Becoming A Tennis Plaver: Going To San Diego It was toward the end of the first year of this research project that Wesley and I planned a ruad trip to San Diego for the U.S. Open Wheelchair Tennis Championships. Tennis was an occupation central to Wesley's life, both as a sport in which to participate and as a venue through which to meet friends. As I was driving to Wesley's home, I thought about previous interviews and about what I had come to know about Wesley as a person. I amused myself with the idea that a little over a year ago I would have been perplexed by the thought of how 3 guys, 3 duffle bags, and 2 wheelchairs were going to fit into a two-door sport coupe. I thought about how many people I had met who were surprised by the fact that wheelchair users are able to drive and even more surprised by the notion that something like wheelchair tennis exists. In part, I think that I was deriving my amusement from reflecting on my own ignorance. Only a year ago, I myself had wondered what it was like for someone to drive or compete in a tennis tournament after a cervical level spinal cord injury. On this day, while driving down to meet Wesley, I was excited about attending the tennis tournament and about seeing an aspect of Wesley's life that had been central to him for so long. By this point in the research relationship, Wesley and I had already played tennis on a few occasions and discussed many aspects of what the sport meant for Wesley. 130 Tennis was more a recreational thing - again, I needed to stay busy, you know, have activities to do. I had the job, the job took up some time but I needed time to recreate, you knov.\ I was like, what can I do to have some fun, you know. And, um, as a matter of fact, I think I might have told you, during my first years out, I didn't have any disabled friends, they were all my able- bodied friends. So I'd do things with them and I'd go out on my own and go pushing and things like that. I was, I did a lot of sports as I grew up, so it was nice to get back into the competitive mode like that. And I had played tennis with my older brother when he was playing in high school. I'd hit with him, so tennis was just a natural thing. Yea, so just looking for activities that I could do, just get out there and do stuff, be active. As Wesley reflected on his involvement with tennis, he initially described it as something that serves the purpose of recreation. However, for Wesley, tennis turns out to be more than something casual or something to just "stay busy" or to "have some fun." For Wesley, tennis comes to be a world through which to build friendships, express identities, and stay physically active. Although casual in his verbal narrative, the amount of time Wesley actually spends practicing, competing, and thinking about tennis is substantial: Umm, not with my schedule. If I could get three or four practices in during a week, I was in pretty good shape. So it was a lot of weekends and a couple of weeknights after work. I'd be happy with that. Like I said, I could have put more effort into it, you know, practiced more. But like I said, it was never that big of a thing for me, it was more of a social and exercise kind of a thing and just a little playing and having fun. Although Wesley stated that tennis was "just...fun," I suggest that the world of tennis for Wesley is imbued with much more than just frivolous play. Instead, it is a 131 realm in which he rebuilds identities infused with feelings of competence and notions of possibilities. Wesley holds high expectations for himself. For Wesley, practicing three to four nights per week after work and competing on the weekends is "just a little playing and having fun." In addition to the weekly practices and competitions, tennis actually involves both domestic and international travel as wei! The figured world of tennis for Wesley is based on underlying storylines and pivotal objects that he often wanted to convey to me in our discussions about the history of wheelchair tennis in America. I subsequently came to see this history as significant in my analysis, situating tennis as a figured world in which Wesley constructs and expresses his identities through occupations. Historical Overview Of Wheelchair Tennis Tennis has a long history in America and around the world. Here, however, I focus only on one aspect of tennis: the historical development and current practice of wheelchair tennis. I believe that understanding the development of wheelchair tennis provides a context in which to situate the events around a figured world. As this section will show, it also gives credence to Wesley's need to be seen as equal. According to the International Tennis Federation (ITF), wheelchair tennis officially existed in America since about 1976. Much of the early movement to popularize wheelchair tennis into a more visible arena was credited to Brad Parks, an early advocate of the sport as well as the first U.S. Open National Championships winner in 1980. During the course of several years, efforts to promote wheelchair tennis led to the formation of the International Wheelchair Tennis Federation (IWTF) in 1988. 132 This occurred in tandem with the showcasing of wheelchair tennis during the 1988 Seoul Olympic Games. The initial purpose of IWTF was to spread enthusiasm about tennis among potential players within the wheelchair community as well as to popularize it as a sport worthy of spectatorship. During the 1992 Barcelona Paralympics, wheelchair tennis gained recognition around the world as it became a full medal sport. During the 1992 Paralympics, 32 men from 14 countries and 16 women from 6 countries competed. In only 4 years, wheelchair tennis grew to be represented by over 72 players from 24 nations in the Atlanta 1996 Paralympic Games. The sport continued to grow during each of the subsequent Olympic games (International Tennis Federation Website-Olympics, 2004). By virtue of the visibility and popularity of the Olympics and Paralympics, more publicity and funding became available for the wheelchair tennis community. As wheelchair tennis was promoted, the ITF wrote: "Up-down" exhibitions continued to be a great way to spread the word, with a wheelchair player teamed up with an able-bodied partner. Many exhibitions were staged around the world, usually in conjunction with ATP/WTA tournaments or Davis Cup and Fed Cup ties. Top professional players such as Jonas Bjorkman, Jim Courier, Ivan Lendl, Gabriella Sabatini, Conchita Martinez, Bjorn Borg, Richard Krajicek, Jimmy Connors, John McEnroe, Yannick Noah, Arthur Ashe, Pete Sampras, Stefan Edberg, Chris Evert and Martina Navratilova have all helped to promote the sport through their participation in exhibitions around the world. For those familiar with the world of professional tennis this roster of names speaks for itself. Pairing a wheelchair tennis player with someone like McEnroe or Sampras 133 brings a new image to the sport. "Up-down" exhibitions exemplify how disabled players can play against nondisabled players as well as along side nondisabled players. The symbolic message of this togetherness is powerful: disability or the use of a wheelchair does not have to stand in the way of engaging in occupation together as tennis players. This is where I find the most central link to Wesley's narrative: Wheelchair tennis integrated so easily with the able- bodied game since it can be played on any regular tennis court, with no modification to rackets and balls, with the only rule difference being that the wheelchair player gets two bounces. Wheelchair tennis players could easily play with able-bodied friends and family and this integration allowed the game to grow much faster, ensuring that a wheelchair player could get out onto the court to practice with anyone. (ITF) The basic message from the governing organization is that with minimal adaptation, wheelchair tennis is a sport that allows for competition and camaraderie among disabled and nondisabled players. The socially constructed realm that I have referred to as a figured world is not represented by the stasis of a geographical place or group of characters, but instead by a more fluid state of co-production of as well as co- participation in occupations, collective ideologies, and objects of significance (Holland et al., 1998). Wheelchair tennis was born out of a sport familiar to many, but adapted with regard to rules and significant artifacts in order to meet the needs of a new generation of players. For Wesley, participating in realms where he is an equal is vital to his expression of identities along a line of competence and success. Tenr c comes to be an outlet for Wesley to engage in an occupation with others who also use 134 wheelchairs, but without feeling disabled. Wheelchair tennis is unique in the sense that, within this world, Wesley can engage in a competitive game with players regardless of whether they use a wheelchair. Because of the underlying storylines of wheelchair tennis and a consequent position within the broader tennis community, Wesley is able to enter into a figured world that is constructed around the abilities, competencies, and friendships of players rather than being constructed around the wheelchairs and adapted rules. For Wesley, wheelchair tennis is symbolically figured around the "tennis" and not the "wheelchair." Tennis can been seen as a socially constructed world made up of spectators, players, rules, rackets, balls, and hierarchies, and thus a place where identities can be formed. As such, a figured world of tennis is not a place, but rather a set of social connections, objects, and assigned rules that take on specific meaning. Tennis brings players together as both friends and as competitors in a very particular context. The same two people may share lunch and discuss matters of work or family as friends; then, as they prepare for a tennis game after lunch, they are refigured, not as friends, but as competitors. The shifting of occupations from that of sharing a meal to that of playing tennis is accompanied by a shifting from one figured world to another. Although the characters remain the same, the rules, objects, and environments change. The sense of congeniality expressed at lunch is no longer the expectation on the tennis court and is instead replaced by a sense of competitiveness. 135 The Reconnection With Tennis Wesley's transition from the sidelines of spectatorship to the court of competition was not without struggles. Despite Wesley's saying that "tennis was just a natural thing," I discovered over the course of our interviews that tennis was not something that had just been a "natural thing." In fact, reconnecting with the tennis community as a player had taken many years after Wesley's spinal cord injury. During the years immediately following his injury, Wesley explored a variety of other sports. However, he was always ambivalent about joining as a player: Basketball is really tough for quadriplegics; you won't see them play there. There's what they call quad rugby, but that's a pretty collision violent sport, its almost like football in a wheelchair. Um, a lot of pushing would be really great exercise. I like tennis; it's exactly what I wanted. After much deliberation and yearning for the opportunity to participate in sports once again, Wesley declared that tennis was his interest. However, Wesley was unsure about how this can be possible. Since Wesley had played tennis before, it was familiar to him and yet it was as though he needed something to unlock this world of tennis. Jackson (1998a) described a woman, Sandy, who survived a "double stroke" (p. 467). Before her stroke, Sandy juggled many occupations including mothering a teenage son, entertaining friends at home, and negotiating a stressful corporate job with a newfound outlet as an amateur bowler. Sandy was frustrated by how the 136 residual effects of the stroke limited her ability to participate in meaningful occupations. The analytic focus that I am interested in here is centered on a community outing where Sandy and her occupational therapist visited a mall and ended up searching for the "perfect tablecloth" (p. 468). Sandy's story illustrates how the co-constructed occupation of shopping contributes to Sandy's experiences as a person who is not limited to facets of disability and therapy, but as a person with many aspects to her life, integrating identities along a temporal continuum connected to shopping, mothering, and being lesbian. Of particular interest here is the aspects of this analysis that explore how "occupational stories are embedded within a social and personal context" (p. 469), how the occupation of looking for the perfect tablecloth embodies "many themes from her previous and possible future experiences" (p. 470), and how occupation allows for the negotiation of "disability into her fabric of identity" (p. 471). Although Wesley does not have the assistance of an occupational therapist, Wesley too does eventually find his "perfect tablecloth:" in his case, it is the world of tennis. I asked Wesley about how he finally entered into the world of wheelchair tennis. While working, I got to see some people playing wheelchair tennis, and I played tennis before that, and was interested but didn't think that at my level I could play, and I saw they taped up, and I wanted to find something that I could do myself. I found a device that was easy enough to put into the racket or I could put my hand into, and swing the racket on my own. And as soon as I found that device, I got one made for myself. I bought another chair, a lightweight chair I could play tennis in. 137 Seeing other individuals using wheelchairs and playing tennis intrigued him, but Wesley said he .didn't think that at my level I could play." It turned out that what initially held Wesley back from reconnecting with the tennis community was the disabling perception of "taping up 17 ." Wesley moved around the periphery of spectatorship, occasionally entertaining the idea of becoming a player, then retreating to the sidelines where he would again be a spectator. Like Sandy, Wesley too experienced the frustrations of not being able to participate in a favored occupation because of his disability. Although Wesley did not reflect upon his spectatorship of rugby, basketball, or even tennis as a way to imagine himself as a player, it was evident from his narrative that he mused about playing for a long time, especially tennis. By watching other individuals in wheelchairs compete, it allowed Wesley not only to be a spectator of the sport and to learn the rules and strategies of the game, but also to imagine himself as a player within this world. I was intrigued and still perplexed by Wesley's commitment to sports, his history with tennis, and yet his extended hesitation to enter into the tennis community as a player. I felt that there was more to his story. Objects In Figured Worlds: "That Is Exactly What I Need" In subsequent interviews, I continued to inquire about the "device" that Wesley had made reference to, and that had been so pivotal in Wesley's re-entry into the tennis world. Wesley wanted something where he could get ready independently '' "Taping up" refers to the taping of a tennis racket to the hand. Many players with tetraplegia do not have enough grip strength to hold a tennis racket during the course of a tennis match. Therefore. many players in the "quad division" grip the tennis racket and tape their fingers around the racket handle. 138 and with as little effort as possible. It was not until several years after his injury, after Wesley had settled into the routines of work, that he witnessed a man with tetraplegia using a racket that had this "device" attached to the handle. I said, "that's perfect, that is exactly what I need." And so it wasn't until that age that I actually started playing tennis....he had the device that was attached to the tennis racket and you would kind of fit your hand in there and then just Velcro it. You know, down and you're ready to go. None of this long taping and undoing. And as soon as I saw that device I thought this could work, and it worked out perfectly. I ^ as able to get back in sports and do it competitively, and I met some really great people and stuff. The idea of a racket splint deeply intrigued Wesley. This moment on the sidelines of a tennis court defined a critical point in Wesley's entrance, more fully, into a familiar but new figured world. The simple discovery of an adapted tennis racket afforded Wesley the opportunity to reconsider an occupation that he had dismissed in his mind as something that would not be possible. Suddenly the impossible had become possible and the feelings of doubt were replaced with hope. For Wesley, coupling the tennis racket with the affixed hand splint brought a whole new level of potency to the meaning of this artifact within figured world of tennis. Generically, the function of moldable plastic splinting material is to make orthoses that aid in maintaining or correcting body position. In this case, however, the function is adapted to serve the purpose of securing a racket on Wesley's hand. Wesley is now as independent in donning the tennis racket as he is in donning his shirt in the morning. 139 The general function of a tennis racket is as a tool to hit a tennis ball. The size and shape of the racket head, tension and weave of the strings, and material composite of the frame, have an impact on the racket's weight, durability, and usability. These characteristics influence the amount of power and precision that a player is able to execute. For example, Wesley shared with me during one of our tennis games that he lacked upper body strength due to his spinal cord injury. For this reason, Wesley chose a racket that afforded him maximum power at the expense of precision and control, because he felt as though he could better control for precision through practice. These are the critical elements of objects that Holland et al. (1998) make reference to when they write that "artifacts 'open up' figured worlds" (p. 61). Figured worlds are evinced in practice through artifacts employed by people in their performances. Such artifacts are pivotal in the sense Vygotsky attributed to them in play. Artifacts "open up" figured worlds. They are the means by which figured worlds are evoked, collectively developed, individually learned, and made socially and personally powerful. (Holland et al., 1998, p. 61) In Wesley's case, this transition of moving from spectator to player was not only about wanting the simplicity of donning the racket, but more importantly about Wesley needing to feel that he was an equal participant. There were thus two major artifacts that opened up the figured world of wheelchair tennis for him. First, there was the physical "device" that allowed him to use a tennis racket simply and without assistance. Second, there was the rhetorical "device" - the underlying ideologies and 140 storylines of wheelchair tennis - serving as a mechanism by which Wesley could see himself as part of a respected new generation of players in a recognizable world of tennis. If Wesley had settled for a sport that required him to depend on assistance or a sport that was restricted to only individuals with disabilities, then in his own mind, Wesley would have essentially accepted himself as a person defined by disability rather than as a person of independence and confidence: In our terms, the actions, the deployments of artifacts such as pronouns and chips, evoke the worlds to which they were relevant, and position individuals with respect to those worlds. It is their pivotal role, as Vygotsky called it - their capacity to shift the perceptual, cognitive, affective, and practical frame of activity - that makes cultural artifacts so significant in human life. (Holland et al., 1998, p. 63) The figured world of wheelchair tennis had been "opened" and "evoked" for Wesley through the coupled ingenuity of an improvised splint and an empowering storyline. Being independent and empowered in this way placed Wesley on the tennis court, potentially with an able-bodied friend or player. Traveling to San Diego with Wesley and his friend had allowed me to understand this concept more fully, as they told me about the rich and proud historical background of tennis and in particular, wheelchair tennis. Thus, as Holland et al. have pointed out, it is often through this process of improvisation and reshaping of figured worlds in which people's identities are also created: To attend to the materiality of cultural artifacts is also to recognize the force of their use in practices - practices responsive to changing historical circumstances (see also Holland & Cole, 1995). The 141 conceptual and material aspects of figured worlds, and of the artifacts through which they are evinced, are constantly char.' .'rg through the improvisations of actors. This ccn-jw of flux is the ground for identity development. (Jo'terd et al., 1998, p. 63) The man with the device that Wesley had observed on the tennis court was an agent in the improvisational process of changing the world of wheelchair tennis, through artifact and participation, to open up the world to more players with tetraplegia. Wesley entered into this world, perpetuating improvisation and change in the wheelchair tennis world but also within himself. As Wesley became part of the figured world of tennis, the figured world of tennis concomitantly became part of him. In this way, I purport that Wesiey's involvement in tennis was more than "jus* a way to stay busy;" it was a way to recycle, recreate, and express identities through occupations made possible within a multi-faceted and socially constructed realm, a figured world. These were occupational stories embedded in socially constructed contexts, and the threads of past identities woven into new ones (Jackson, 1998a). Retiring From Tennis Tennis has taken on multiple meanings for Wesley and has changed over time. Wesley's temporary hiatus from playing competitive sports after his injury was not an indication of any lack of interest on his part. Rather, it was a representation of the formation and sculpting of new identities. Immediately after his injury, tennis allowed Wesley to be a spectator of the sport and participate not only through spectatorship, but also through imagined participation in the sport. Tennis served as a bridge between the past, present, and future. In fact, sports in 142 general had been a natural part of Wesley's youth. Wesley practiced playing tennis and gradually it became a sport through which to be competitive. Then, about one year before I met Wesley, he decided to redefine his involvement in tennis. He now plays -• ',th friends on a more recreational level and for general fitness. He also continues to attend the national tennis tournaments as a spectator and supporter. Wesley explained why he again moved toward the sidelines of the sport: i played 9 or 10 tournaments one year. But I've kind of burned out on the tournaments. I like going out with friends and just hit around, get some exercise. But, um, the tournaments 1 just get a little bored about them and it's the same old thing. And I have to play this certain level. I am too good at one level and then I am not too good at the other level.. .So I get my butt kicked a lot too, so it's not a lot of fun either. And I just like playing it competitive, you know, like playing people at a good level. So i kind of cut back on the tournaments.. .Last year I think I played in four or five tournaments. I've done some traveling. I went to England and played, went to Switzerland and played. Did a lot of traveling in the U.S., played in Florida, Minnesota, and St. Louis. During the course of this study, Wesley was instrumental in opening my mind to possibilities that I had not previously seen. He challenged me to revisit what I had regarded as common sense or had come to take for granted. I had viewed with skepticism the possibility of someone with tetraplegia playing tennis. I assumed that paralysis of one's upper extremities would naturally mean the inability to play tennis in a meaningful way. Wesley challenged this notion when he invited me to play tennis with him. In fact, tennis became something that Wesley and I shared over the course of this research endeavor. Not only did tennis become a meaningful 143 co-occupation for Wesley and me, but also it came to symbolize Wesley's independence and ability. Bringing Figured Worlds Together: "Forget That I'm Disabled" To recap, when I met Wesley it was many years after the accident in which he acquired his spinal cord injury. Wesley filled his days with occupations revolving around employment and leisure pursuits. Initially, this did not seem unusual or theoretically significant to me. However, over the course of several interviews and ethnographic periods of "hanging out," I began to see the occupations confuting work and tennis, and the contexts in which these occupations were carried out, as instrumental in the construction and expression of identities for Wesley. For Wesley, going to work and playing tennis were not arbitrary matters in order to go along with mainstream ideologies, but rather expressions of resistance - both internally and externally - against the public perceptions of eternal dependence that are often erroneously ascribed to people living with disabilities. From Wesley's perspective, both work and tennis entailed socially constructed as well as socially charged contexts in which he enacted occupations and lived out identities imbued with ability, competence, and hope. Wesley communicated to me in various ways how he felt "able" rather than "unable" with'n environments such as the workplace and on the tennis court where he carried out his occupations, and how in some contexts his disability even became nonexistent: for example, he stated 1 don't know, it seems pretty simple to me. It's just an environment [workplace] where I'm an equal. It's just like me when I get in my car and drive on the freeway, 144 I'm an equal. Get me on a beach in sanu, I've got a big disability now, I'm not an equal, you can't move around very good in the sand, but that's kind of the situation, I think the best way to describe it. These assertions are especially significant because these are made in the context of disability. Wesley makes clear that work or the tennis courts are places where he is not "disabled." Ironically, "equality" may not come to mind when hearing Wesley talk about work or tennis, nor does the idea of "I'm no different." On the contrary, what initially comes to mind within the context of corporate America, international competitions, and Wesley's success is upward mobility, something that comes not from sameness with others, but from proving oneself as positively different and exceeding the normal expectations (Markus & Kitayama, 1991). On several occasions over the 18 months that I spent time with Wesley, he shared with me how one of the greatest compliments for him is when people forget that he has a disability or when his disability becomes invisible: People seem to forget that I'm disabled. That's the best, I've told you, that's the best compliment I can ever hear. As far as things about the disability, they really go away....that's all it is, and that's why I'm very comfortable in something like that. Although Wesley's spinal cord injury never really "goes away"per se, it becomes a non-issue within certain social configurations. It rarely affects the shared experiences of occupations performed within these figured worlds, such as the workplace and on the tennis court. However, at times, it might. Depending on the social constructions of the milieu in which occupations are enacted, the occupations 145 become infused with the connotations of disability. Occupations that otherwise have little to do with power suddenly take on elements of social privilege. Because people's social privilege is often associated with the occupations that they carry out in particular contexts, positions shift as people move between different worlds and different occupations. In the moments of shifting between contexts and renegotiating occupations, the enactor's position is suspended in a liminal state of question. When Wesley and I share a meal for example, and we enter into a conversation about something like his trip to the Caribbean, there is nothing to indicate "disability" in a sense of inability or a need for assistance. Sitting at a table and sharing a meal at a restaurant becomes a natural, if not a habitual, part of our relationship. The fact that Wesley occasionally benefits from certain customized accommodations conceptually seems no different from an "able-bodied" person needing a vegetarian meal or a nonsmoking room in a hotel. Even so, a request for a special meal or a nonsmoking accommodation is rarely equated with disability. On the other hand, requesting a bathroom with grab bars and railings is much more readily seen as a stigmatizing situation leading to images of impairment and dependence. Unfortunately this is what the concept of disability tends to mean within the public domain. By aligning occupations with figured worlds, I have attempted to accentuate the theoretical complexity of occupations within a broader social realm. For Wesley, occupations pertaining to work and leisure are imbued with a breadth and depth of symbolism and meaning that must be placed in context. Thus, this chapter provides 146 social context, as a starting point from which to explore the construction of identities through occupations. Jarman (2004) wrote that, "Occupation is not just something that is done, nor is it just a category of work. Instead occupation involves a series of thoughts, actions, and interactions in particular places and times" (p. 50). Moreover, Jackson (1996) asserted: People's choices for action are impelled by personal passions and convictions, yet these commitments are embedded within a particular social-historical community of beliefs. People do not act in isolation of others nor do they automatically assume the particular cultural traditions and beliefs into which they are born. (p. 341) People are inherently social beings, participating in multiple figured worlds, shaping and being shaped as they negotiate and move between these worlds. Since the boundaries of a figured world are socially created by the collective group as well as by each individual member, one's sense of identities and meaning within a figured world is always in process (Holland et al., 1998). In this way, "People negotiate an evolving story about their life events and how their lives fit or contradict the world around them." (Jackson, 1996, p. 341) Chapter Summary Within the figured worlds of work, tennis, and social relationships, Wesley expresses his identities as being "equal." For Wesley, the figured worlds in which he is a part are not about disability, but about the occupations around which the worlds are organized. Wesley works in a company where his loyalty and skill have placed 147 him among the ranks of managers. It is a place in which Wesley can express aspects of himself as someone who is successful and who can independently accomplish his work; in his words it is not "a beach in sand." Wesley's story also illustrates how, even though he plays tennis with other individuals who live with "disability," the relationships that form this world are about tennis for, not about disability. When Wesley initially watched tennis, he found a connection to his past but did not enter into this figured world as a player. Entering into this tennis world at the time would have been an assault to his identity as a tennis player. For the time-being he was content as a more passive participant, fostering the links to his past while imagining a more active role. Eventually, Wesley found a way to move from a passive peripheral participant to a more central one when he discovered a racket splint. The splint enabled Wesley to recreate and express identities as a tennis player. It was not until the discovery of the tennis racket that this became a possibility for Wesley, because prior to the discovery, Wesley would have resigned himself to identities of disabled. For Wesley, the splint allowed him to enter into this realm as a tennis player, and as someone who could play and practice with non-disabled players. What is most important about the figured worlds that Wesley moves between is not related to disability, but rather to a shared experience around occupation. Wesley's story illustrates how his sense of identities is challenged through the breaches in his own perceptions about what disability means and who is perceived to be as he shifts between worlds. When Wesley reflects upon public perceptions, when he is confronted by my questions about his disability, or when random people 148 in the community question his "sameness," he is forced to reassess his position within the figured worlds in which he has become a part. 149 CHAPTER 5 Rosalyn's Story In the previous chapter I illustrated how Wesley negotiated identities through occupations situated within figured worlds of work and leisure. Like Wesley, Rosalyn forms and expresses her identities through occupations; however, Rosalyn's story unfolds within different environments and with focus on an additional dimension. Rosalyn's story places an emphasis on matters of negotiating social position within figured worlds of motherhood. Elements of power linger in the background of Rosalyn's narrative - embedded in her public interactions and language - and expressed most vividly when engaged in occupation. In this way, Rosalyn moves in and out of figured worlds, negotiating her position along strikingly complex storylines of motherhood. Rosalyn rejects notions of a disabling image of herself at all times; however, as contexts shift so does the expression of her identities as a mother. Mothering is a significant and striking aspect of Rosalyn's story. Her story specifically illustrates how she constructs, re-constructs, and expresses her identities through occupations of mothering; it demonstrates how becoming a mother and carrying out the occupations associated with mothering transforms her sense of identities. Mothering is not constituted by a neutral set of contexts here; instead, Rosalyn finds her occupations deeply intertwined within socio-political undercurrents of power embedded in language and her interactions with other 150 people. Further marginalized by such demographic titles as being a woman and being recognized as Latina confounds the complexity of negotiating identities as a mother living with a disability. In this way, Rosalyn's identities carry a multi- minority status in the broader society in which she lives. I continue to draw on the work of Holland et al. (1998) to explicate ideas of narrativized and positional identities within the figured worlds where Rosalyn carries out her daily occupations. I also draw from literature about mothering to support and strengthen claims made regarding the inherent power that lingers within the social discourses that inform these figured worlds. I shall begin this chapter with Rosalyn's accident, then continue her story from the point at which I first met Rosalyn. During the remainder of the chapter, I will set the scene of motherhood and provide an analysis for Rosalyn's negotiation of power within this context. "I Never Expected It To Happen" Rosalyn and several of her peers decided to plan a party for a friend who was graduating from high school, deliberating among themselves about organizing food, beverages, party favors, music, and other social activities. On the day of the party, Rosalyn spent most of the afternoon preparing appetizers and oven-baked casseroles. As she prepared the food, she would bring batches over to her friend's house. The day gradually turned to evening and Rosalyn felt excited about getting ready for the festivities. Rosalyn recalled that the party turned out to be a great success and everyone seemed to have a great time. As it got later, Rosalyn began to feel tired from all the excitement leading up to the actual party. She had been on her feet the 151 entire day, running between houses, preparing food, and taking care of last-minute details. After several hours, Rosalyn decided that it was time to leave. She packed her belongings and made her way toward the door, exchanging good-byes along the way. As she exited the house, Rosalyn smiled and took a deep breath. In that breath, Rosalyn felt satisfied with her efforts during the day and simultaneously felt relieved to be going home. Rosalyn walked across the street to her car and suddenly realized that she had forgotten her purse. In that instant when she remembered her purse, without another thought, Rosalyn made a 180-degree pivot turn. As she took her next step back toward her friend's house, from the corner of her right eye, Rosalyn caught a glimpse of something moving. She remembered the following seconds as if she was moving in slow motion. As she turned to her right, she realized too late that a car was coming towards her. There was a loud bang as Rosalyn was hit, followed by screeching tires when the car drove away. Though she never lost consciousness, Rosalyn lay still on the road. Nobody from the party witnessed the accident, but several people had heard the loud sound from the impact. As people from the party came out onto the veranda to see what had happened, her friends found Rosalyn lying in the middle of the road. Someone called for an ambulance and Rosalyn was taken to a local emergency room. She was treated for an incomplete spinal cord injury. Rosalyn was 16 years old; she said, "I never expected it to happen." 152 Meeting Rosalvn When I scheduled with Rosalyn to meet her for the first time, it had been 10 years since her accident. We met at her parents' house where she was living at the time, in a part of southern California with which I was only vaguely familiar. They lived in what I had heard was a poor and crime-ridden neighborhood. As I drove up to the house, I surveyed the neighborhood for signs that it was safe for me to be there. It was a busy street and both sides were lined with trees and homes. In the front yards were children playing and families sitting on front porches engaged in conversation. The houses did not exude financial wealth and success (in the sense that the American media portrays success), but I sensed warmth from the sounds of children chattering and laughing. I walked up towards the house where Rosalyn lived and noticed a ramp leading up to the front door. The ramp appeared to be homemade; the angle appeared steeper than generally recommended, the wood was unfinished, and steel pipes had been affixed for handrails. I climbed the ramp and rang the doorbell. A man, who I later learned was Rosalyn's father, opened the door and offered me a seat in the living room. As this was my first time meeting Rosalyn and seeing the environment in which she lived, I took note of my surroundings including the interior decor and objects that were displayed in the home. Although I documented the environments where I met all the participants in this study, Rosalyn's home came to be of particular significance because I learned that she spent most of her day there. Although I did not know it at the time, the occupations that were most central to Rosalyn and inextricably tied to 153 most other aspects of her life revolved around the people and social environment of this home. Rosalyn's father had disappeared down a narrow hall, I presumed to let Rosalyn know that I had arrived. As I waited, I continued to survey the environment. There was a couch and a love seat at right angles, and a television situated in the opposite corner of the room. The living and dining area were connected and had wall-to-wall carpeting of a faded dark orange color; the floor was covered with toys and baby trinkets. In both rooms, I could see boxes of various goods ranging from medical supplies to pet food. The lighting in the living room was dim and it seemed like a dual-purpose living and storage area. From where I was sitting I could see what appeared to be a small kitchen beyond the dining room to the right. To the left, I could see a narrow hallway. After less than a minute, Rosalyn's father returned, appearing through the narrow hallway with a baby in his arms and told me to go on back to the last room on the right. I thanked him and proceeded to follow the hallway. Next to the wall between the hallway and the kitchen, there was an antique looking wooden chest of drawers with a dark finish. On top of the chest were family pictures, porcelain dolls and figurines, as well as some bills filed between ornaments. The walls around the living room and dining areas were also decorated with what I assumed were family portraits. On the other hand, the walls along the hallway were barren. There was a door on my right with a padlock on it. 1 later learned that this was Rosalyn's parents' bedroom. At the end of the hallway there were three more doors. The door on the left was a closet, the 154 door straight ahead led to the bathroom, and the door to the right was the entrance to Rosalyn's room. I knocked and entered. Rosalyn was a young woman with dark brown eyes and shoulder length dark black hair. She was sitting on her bed, wearing jeans and a t-shirt, and she struck me as being somewhat overweight. She initially had a passive gentleness about her demeanor, by this, 1 mean that her tone of voice was soft and her eye contact shifted between a downward gaze and glances in my general direction. Once in a while, Rosalyn would make eye contact. As we began to talk, her answers were brief and vague, but articulate. After a few minutes, she became more comfortable and animated. We talked about Rosalyn's past and about her thoughts pertaining to events from various times in her life. 1 came to learn of a light-hearted side to Rosalyn that hadn't been immediately apparent. Rosalyn would often use sarcasm. This became more apparent as time went on and as I continued to become more acquainted with Rosalyn. Over the course of our interviews, I learned about many aspects of Rosalyn's life, about her perspectives on many different subjects, and I saw her interact with others in her environment. I learned that during the years following her spinal cord injury, Rosalyn dropped out of high school but successfully completed her general education development (GED) exam, took a journey down a slippery road of drug use, and transitioned into the realm of motherhood. These aspects were not equally significant events, but all were momentous, and were in many ways interconnected. For Rosalyn, being a mother and engaging in the occupations of 155 mothering became the single most important aspect of her life. The significance of mothering for Rosalyn was nv.^e most explicit when placed against a backdrop of the events leading up to her pregnancy. I thus return to Rosalyn's story, picking up from the years following her injury, and begin to explore her personal transformation from a young woman consumed by a daily life of drugs to a mother celebrating her sobriety. A World Of Drugs: "My Main Focus - To Be High" Although Rosalyn was not new to drugs at the time of her injury, her involvement worsened during the years following her accident. Rosalyn says that she first used marijuana and soon thereafter began experimenting with other drugs 18 . She said that she tried every drug on the market 'hat did not require the use of a needle, confessing that, "I was using a lot of drugs for a long time. That was my mair c ->cus - to be high." I continued to ask Rosalyn about the period in her life when she was using drugs most heavily. Rosalyn shared with me that her drug use was the reason for dropping out of school and for not being able to maintain a job. Rosalyn des . • 'bed to me how she would often wake up in a motel room realizing that she had not left for days. Per Rosalyn's description, these motel rooms were occupied by several people who came and went over the course of hours and days. Sometimes she knew the other people, and sometimes she did not. Although Rosalyn attempted to cease 18 Rosalyn actually hesitated to reveal her drug history with me during interviews when 1 had a recording device, though she shared with me in detail over lunch one day. The impetus for this lunch interview came from an interview during which Rosalyn began to talk briefly about her prior history with drugs. 156 her drug use on more than one occasion, she says her initia' attempts were unsuccessful: I've been sober a while. I did fall off the wagon a few times! But I picked myself up, and he [boyfriend] was always there to help me. And he stood by me through that. And I respect him for that. He never, even then, he didn't treat me bad. He didn't put me down. He didn't criticize me. He stood there. He was there for me, you know? Rosalyn admitted that she "fell off the wagon a few times." She tried to quit, but was unable to follow through with her decision at first. Rosalyn denied ever attending any type of detoxification program, support group, or utilizing emergency medical resources during her years of drug use. Surprisingly, Rosalyn even denied any encounters with law enforcement while under the influence of drugs or during any of the transactions needed to obtain the drugs. Instead, she said, "I picked myself up." Rosalyn referred to her boyfriend as "always there to "Hp me," and being the greatest support as she began to think about "quitting." Rosalyn continued to say, "he stood by me through that," conveying that her boyfriend supported her when she relapsed after months of sobriety. During these years, Rosalyn withdrew from friends, family, school, work, and all leisure pursuits that she had once enjoyed. This was also a time when Rosalyn says that every moment was devoted to occupations of getting high or the pursuit of acquiring something that would bring her one step closer to getting high. As Rosalyn said, "My main focus - to be high." In reflecting upon this period, Rosalyn said, "Yeah. Maybe at the time I didn't think it was wrong, like, I didn't, I 157 was reckless. Now I look back on it and I'm like, 'What were you doing' - well, I remember thinking it was kinda fun!" These years of being what Rosalyn referred to as "reckless" ended one day when she woke up in a motel, looked around at the other people scattered around the room and thought to herself - "what am I doing?" She had spent several days "tripping," not eating anything of substantial nutritional value, and beginning to feel that she was unable to remember events. According to Rosalyn she decided then to change her life. Around this same time, Rosalyn discovered that she was pregnant. Although Rosalyn did not remember or know for certain whether her last "trip" coincided with her pregnancy, she remembered learning of her pregnancy and making a definite decision to end all drug use. When I met Rosalyn, she said that she had been clean and sober for over 19 months, and her daughter was 10 months old. In this way, Rosalyn's pregnancy was not only the pivotal point in making a major change in her life, but was also the gateway into a social context full of occupations, and a world of motherhood. Figured World Of Mothering: "It Just Made Me A Better Person" I intentionally move onto a figured world of motherhood here, after Rosalyn's history with drugs, because of how she interpreted the connection between these events along a trajectory of change during her life. Developing a comprehensive sense of motherhood as a figured world from Rosalyn's perspective is critical in setting the scene for exploring how identities are negotiated and expressed through the occupations involved in mothering. Moreover, developing a 158 sense of how Rosalyn constructed her identities within a figured world of motherhood allows for a more meaningful discussion of issues regarding social position and power later in this chapter. Following a lineage of scholarship already put forth in occupational science, "mothering" as I use the term here is about activities, practices, and social participation - in other words, occupations devoted to the rearing of a child, not about a gender role (Jackson, 1998b, 1998c; Lawlor, 2004; Ruddick, 1994). I intentionally differentiate between motherhood and mothering here to demarcate a distinction between the social context or figured world (motherhood) and the occupations (mothering) that characterize the lived identities in these worlds. A figured world, briefly revisiting descriptions from Chapters 2 and 4, is "a socially and culturally constructed realm of interpretation in which particular characters and actors are recognized, significance is assigned to certain acts, and particular outcomes are valued over others" (Holland et al., 1998, p. 52). In other words, critical to the framework afforded by figured worlds are: (1) characters, (2) occupations, (3) ideologies, (4) objects, and (5) storylines. In the context of this chapter, the relevant characters are Rosalyn (mother), Rosalyn's child (daughter), Rosalyn's boyfriend (father), Rosalyn's parents (grandparents), and outsiders (friends, other mothers, and random people with whom Rosalyn comes into contact). Relevant occupations within this figured world include such activities as reading, going to the park, playing at home, preparing meals, and feeding. Ideologies include such aspects of life as making conscious efforts to eat a healthier diet while pregnant, 159 creating a healthy diet (e.g., including vegetables), taking vitamins, and simply being a "good" mother. Within the figured world of motherhood, there are a plethora of objects and artifacts, namely Rosalyn's daughter's toys, diapers, baby clothes, and assorted other baby paraphernalia. In addition, within Rosalyn's realm of motherhood, her wheelchair is also a significant object. The storyline of motherhood for Rosalyn is rooted in seemingly Western practices as well as morality. At first glance, motherhood and mothering may seem self-evident; these are ideas having to do with being a mother. Generally, this may include both a community of other mothers as well as sharing in a certain series of behaviors associated with mothering. Moreover, in North America there is an especially strong sense of moral code pertaining to what it means to be a "good" or "bad" mother (Falk, 2000; Farber, 2000; Francis-Connolly, 1998, 2000). Many women negotiate and orchestrate occupations of mothering in ways that parallel perceptions of "good" parenting (Lawlor, 2004; Lawlor & Mattingly, 1998). These attitudes are by no means singular. Rather, there are many perspectives on motherhood, some of which co-exist in stark contradiction to each other. In this way, as one begins to inquire more critically about what constitutes motherhood or mothering, the complexity becomes increasingly more apparent. The complexity exists within the border zone between what a group of mothers share and what is unique to a particular mother. If one accepts that motherhood includes certain common experiences situated within a broad collective context, and concomitantly that mother-child dyads create unique experiences that are independent from the broader context, then it becomes important 160 to present the mother's perspective in more detaii. Moreover, because figured worlds are socially and culturally constructed, it is reasonable to expect multiple worlds of motherhood to e. list depending on such aspects as, but not limited to, cultural contexts. By adding an increasing heterogeneity of meaning to the occupations enacted within figured worlds of motherhood, parameters also gradually begin to change. Thus, what defines the meaning of "good" mothering might not be universal, but might instead vary depending on context. Although mothering in many ways is constituted by a set of unique experiences within each mother-child dyad, there are also recognizable commonalities among collective mothering practices (Arendell, 2000; Farber, 2004). I suggest that these collective practices are rooted in ideologies that are based on socially created ideals. Researchers that focus on the perspectives of mothering among women with disabilities suggest that participants find themselves comparing their potential as mothers against a socially constructed benchmark (Farber, 2000; Grant, 2001). In other words, there is a phenomenon of an idealized mother that seems to seep into the internal discourses of women. In this way, many mothers living with disabilities deem themselves failing to meet the criteria of the ideal mother (Farber, 2000; Grant, 2001). Such an idealized myth about motherhood and mothering is not unique to women with disabilities but also exists among non- disabled women (Francis-Connolly, 2000; Falk, 2000). By drawing from Rosalyn's narrative to delineate the parame ters of motherhood from her perspective, I believe 161 that I will illustrate her point of view, which is heavily influenced by and rooted in mainstream North American ideals. Rosalyn entered into the figured world of motherhood when she learned of her pregnancy. Rosalyn expressed a clear understanding about what she felt were her responsibilities as a pregnant woman. The months leading up to actually giving birth were characterized by a drastic change in lifestyle. She actively began to seek and implement what she perceived as positive changes, changes that were appropriate for a woman who was pregnant. As Rosalyn reflected upon her pregnancy, she said that it turned out to be one of the healthiest times in her life. I was curious as to what she meant; Rosalyn clarified her assertion as follows: During my pregnancy, I was healthy [baby cooing in background]...Before I got pregnant, I wasn't very healthy.. .you have to take care of yourself! You have to eat right, take a lot of vitamins, and I was doing a lot of exercise. I just was, you know. I couldn't just do, like sitting around, you know. Rosalyn somehow equated her pregnancy with health, stating that she had to start "eating right," "taking vitamins," "exercising," and refraining from a state of idleness by staying active. However, upon closer examination and within this context, this was not only a matter of health; these were matters of an internalized discourse about what Rosalyn felt that she should do as a pregnant woman. In saying that "you have to take care of yourself," Rosalyn solidified her stance that the right thing to do if you are pregnant is to take care of yourself, and this was defined by eating well, taking vitamins, and exercising. For Rosalyn, her assertion was absolute and final, it was about what "you have" to do. These perspectives represented socially prevalent discourses permeating American society via various sources such as parents, physicians, friends, schools, books, and from the prevailing images in the media. To some degree, this related to how Rosalyn positioned herself in different figured worlds, an aspect I will address in this chapter, and on the other hand this also related to the function of social discourses in creating identities, something I will address in the next two chapters. Rosalyn described giving birth to her daughter as being "amazing," the most powerful series of moments in her life, both positive and negative, representing an emotional elation countered by pain and temporary incapacity. During one interview, Rosalyn said, "Yeah, that was pretty...it was intense, you know, and then I had a little bit of complications when I had her. And then once I had her, you know, it was like an amazing feeling. Yeah." These moments were not only powerful in a cognitively memorable way, but were also pivotal in ways that validated for Rosalyn that the lifestyle changes she had made were "good." Rosalyn mentioned that the weeks immediately following the birth of her daughter were difficult. She shared how it was difficult because she had numbness and severe pain in her hand from pregnancy-related carpal tunnel syndrome. Moreover, Rosalyn recalled feeling unhealthy because of problems that included "feeling weak," "couldn't sit up," and "couldn't do anything on my own." Interestingly, these moments of frustration and discomfort were intimately intertwined with feelings of joy and satisfaction from sharing time with her newborn daughter. This was a 163 powerful string of events for Rosalyn because it symbolized not only a successful delivery, but also served as the ultimate expression of rejecting disability. By successfully carrying her pregnancy to term and delivering her baby, Rosalyn demonstrated to herself and to the world around her that she was taking part in a repertoire of experiences associated with a broader community of mothers. Over the course of subsequent interviews, I continued to ask Rosalyn about her experiences as a mother. Rosalyn often reflected upon the changes in her life brought forth by becoming a mother. Rosalyn found a sense of responsibility and meaning in life, something that she claimed not to have had before she was pregnant: Rosalyn: I had kinda of, ah...my life is different. Um, I have other responsibilities. I have.. .everyday is something new, you know. My child.. .right now, I'm not married, but you can see I live a married life, you know. J have a child. I have her father. We're not married yet, so in that sense, you know, more responsibilities. Life is different. I'm more mature now. I see life in a different way. EA: How do you see life? Rosalyn: Hold on for just a minute. [Tending to baby. Baby making noises]. Now I have something to look forward to, something to live for, you know, like my daughter. Not that 1 didn't have nothing to live for before. I had myself, but, you know, she's my kid and I wouldn't want nothing to happen to me. Yeah. Rosalyn's words illustrated how it was in the realization of being and becoming a mother that she felt a surge of responsibility to herself and to her unborn child, as well as a consequent desire to make dramatic changes in her life. These feelings were even more confirmed as Rosalyn began to enact daily mothering occupations. 164 She said that she now had "something to live for," as if to imply that her own life was not enough. As Rosalyn migrated between dramatically different lifestyles, there was something about motherhood that was powerful for Rosalyn, instigating change and sustaining the subjectively desirable aspects of that change: Just the fact that, you know, she was mine and she was my child, and I just.. .it just made me a better person because you have to become really responsible. It's a lot of responsibilities, a lot of patience.. .1 have no patience, but you learn to be patient with your kids, you know. They're a headache, you know. It could be a headache, but it's also, you know, being a parent it's great! But...like for example, you know, the little things that they do. "You're so cute!" [to baby]. And, I think that's something, you know! Rosalyn's commitment to her daughter was not only illuminated in her reflections, but also in her actions. Throughout the year of meeting with Rosalyn, I saw her engage with her daughter in different ways. When I asked her about what she and her daughter did together, she said: Oh, we do everything together. Everything we can do together. I take her out, and she's barely learning how to walk, so, there's not really that much, you can't really go to the park and stuff because she's still little. But I try and you know, take her places, and play with other kids. I want her to interact with other kids, I mean, that's hard, I love her, yea. She's my baby. Rosalyn participated in grooming her daughter, preparing meals, playing with a variety of toys, going to the park, having birthday parties, and reading, among many other occupations. She illustrated how mothering was an ordinary experience for her, one in which her disability was rarely the focus. The tone of her voice and the 165 content of what she chose to convey was frequently tied to a social discourse that resonated with a flavor of "ideal" mothering. For instance, in the above excerpt Rosalyn said that although difficult, she wanted her daughter to "interact with other kids," echoing a discourse that "good" mothers introduce their children u variety of social experiences. These types of discourses were infused into Rosalyn's interviews innumerable times. Preparing meals also became a major set of occupations. Rosalyn said that she generally did not like cooking or spending time in the kitchen. For herself or for her boyfriend, she would seldom make efforts to prepare meals. However, this changed when she had her daughter. Again, her emphasis on cooking was aligned with her perception of collectively shared values that mothering should involve preparing well-balanced meals for the children, and moreover that the children should be exposed to good eating habits from an early age: I do make my daughter, like, her, I do get up and make her very health-conscious food. You kr /, I don't give her soda. I hardly ever have given her the slightest taste of anything sweet, and I give her juice in the morning. I try not to give her even Gerber. I don't even like giving her that. I give her more natural stuff. You know, I'll cut her fruit, or then I'll make her, like, a soup and crackers. And for dinner, she'll probably get like a Gerber, and, yeah, for my daughter, yeah, I do that. I watch what she eats, 'cause I don't want her to have bad teeth. 1 want her to be healthy and pick that up since she was little. 'Cause when I was very little, like five, I used to eat a lot of junk food, I had braces, I had rotten teeth. You know, and I don't want that to happen to her. 166 Rosalyn's commitment to her daughter's well-being was clear, and her intentions were certainly tied to the ideals of mothering. She did not give her daughter soda, nor did she buy into ready-made mainstream baby foods. Instead, she said that she prepared her daughter more "natural" foods such as fruits or soups. The core of Rosalyn's statement was, "I want her to be healthy and pick that up since she was little;" Rosalyn made explicit her intention to teach her daughter about health by making it part of her routine and part of her lifestyle. Rosalyn also reflected on her own childhood and thus acknowledged different ways of mothering, taking a stance on which style she perceived as better. Rosalyn shared many stories about mothering with me, revealing the multifaceted nature of these events. Although I only met Rosalyn's boyfriend on one occasion, his presence within family life was made apparent through Rosalyn's narrative. According to Rosalyn, her boyfriend played an instrumental part in the childrearing process, both in helping with parenting as well as assisting with errands. Generally, Rosalyn said that she and her boyfriend spent nearly every evening together with their daughter. Evenings would entail going out to eat, visiting the park, or simply staying at home. In this way, mothering was not always about Rosalyn and her daughter, but sometimes about Rosalyn, her daughter, and her boyfriend. For instance, on one occasion Rosalyn and her boyfriend were concerned that her daughter might be sick: We are still learning. We share that. We share the troubles of sitting in the emergency room with a kid, with your kid being sick. L mean, l':h glad he's here to 167 help me. I mean, I have my parents, so, 1 don't want to be negative too much. Cause, because they're way is like, "Oh, you don't know how to raise your kid." Sharing in parenting with her boyfriend was important for Rosalyn. Rosalyn says, "We are still learning." In a previous interview she said, "You can see I live a married life." Rosalyn and her boyfriend were young and still learning about certain aspects of parenting together. From Rosalyn's perspective, mothering co-existed in synchrony with the shared occupations she performed with her boyfriend, unlike what she shared with her parents. Rosalyn was grateful for the help that her parents provided but on many occasions made it clear that they were not needed for parenting or as surrogate parents due to some lack of ability on Rosalyn's or her boyfriend's part. Regardless of what other people think about parenting with or without a disability, Rosalyn felt strongly that she was able to perform good parenting. On a couple of occasions, I asked Rosalyn if she felt that her disability in any way limited her performance of mothering occupations. Each time, she would look at me and confidently reply, "No!" Participating in daily occupations with her daughter became something routine and ordinary, something that Rosalyn seldom reflected upon as creative, yet these were the occupations that created the unique landscape of motherhood that I describe, as in this example Rosalyn offered: Yeah, and, I always read her books, but in English because I don't have, like, Spanish. She always comes, "Book, book, book." Oh, she comes with her phone now. Her grandma, 1 think her grandma will probably read her some stuff in Spanish. 168 As Rosalyn read to her daughter, they sometimes sat on Rosalyn's bed and sometimes her daughter sat in her lap while they lounged in the living room. During these times when Rosalyn sat with her daughter reading, there was no wheelchair, no adaptive strategies, no disability; there was only mothering. However, I also noticed that there were other times when Rosalyn did need to be creative in finding ways to incorporate her wheelchair into occupations of mothering. 1 observed that Rosalyn was in fact very adaptive in using a variety of techniques to carry out her daily- activities or finding solutions in order to meet her goals. For Rosalyn, this was all common sense. For example, she was initially puzzled by how she would hold hei daughter and propel her wheelchair simultaneously. Rosalyn offered an explanation of how she and her daughter had somehow co-constructed a method as they went about relating to each uer through ordinary everyday occupations: Like carrying her, I used to be like, Oh my God, how am 1 going to carry her? I figure I'll just put her on my lap. Thank God, she liked it! She likes it...she likes it. She kinda knows too, Lke I better hold on, 'cause 1 might like, let go., .you know. So she puts her part in it, too. Riding the wheelchair was a beautiful example of how Rosalyn and her daughter shared a mother-daughter experience out of occupational need, or perhaps simply out of co-creating mothering. Functionally speaking, Rosalyn needed to get from point A to point B within the house and did not want to spend extra time strapping her daughter into a harness. Rosalyn's daughter needed to hold onto her mother in order to not fall off the wheelchair. Both mother and daughter shared in the responsibility 169 to make the travel possible. However, I also felt as though this was more than merely a functional adaptation to serve mobility. This was about the more discrete landscape of motherhood where Rosalyn and her daughter were engaging in creativity and togetherness. These were the defining moments of mothering, uniquely belonging to Rosalyn ari her daughter. I witnessed this orchestrated mother-daughter dance of mobility within the house. Sometimes as Rosalyn would come around a corner, I saw her daughter sitting in her lap facing forward, usually smiling and taking in the scene. As Rosalyn's daughter got older, I would more commonly see Rosalyn wheeling and her daughter standing on the foot rests of the wheelchair facing her mother, occasionally looking around and then burying her face between Rosalyn's thighs. These were not the socially scripted moments of mothering, and yet recognizable as mothering. In summary, I have made an argument for the social contours and content making up a figured world of mothering. Rosalyn shaped and expressed her identities through a variety of occupations within this figured world. It was during the initial months of her pregnancy that Rosalyn began to refigure herself as a woman soon to be mother; an identity grossly different from that of long-term drug- user and high school drop-out. Ultimately, Rosalyn made lifestyle changes that she perceived as healthy and morally sound, something that was for her an imperative prerequisite to motherhood. Many of the collectively constructed ideals that have naturally been figured into motherhood tend to exclude mothers with disabilities. Even though women living with physical disabilities have historically been 170 marginalized as potential mothers (Collins, 1999; Morris, 1995), Rosalyn challenged this perception in every way possible. She did not factor in her disability as a significant factor within the realm of mothering, thus negating any sub-world of motherhood specifically designed for women with disabilities. Social Dynamics Of Power At the beginning of this chapter, I stated the intention to explore how socially embedded dynamics of power influence Rosalyn's relative position in a figured world of motherhood. Of relevance is how sets of collective ideas form ideals about mothering, and how Rosalyn internalized these ideals and interpreted her own position within a figured world of motherhood. Figured worlds are not construed as neutral environments. Holland et al. (1998) wrote, "Another facet of lived worlds, that of power, status, relative privilege, and their negotiation, and another facet of lived identities, that of one's self as entitled or as disqualified and inappropriate, must also receive theoretical attention" (p. 125). Whereas in Wesley's story I focused on laying out the dimensions of figured worlds, situating occupations therein, and illustrating the migration in and out of figured worlds through one's occupational engagement, in the remainder of this chapter I will focus on tensions of social position born out of mixed perceptions existing within the boundaries of motherhood. In particular, I want to give special attention to and draw from my interviews with Rosalyn to illustrate the relevance of power as manifested in language and in social positioning. The source of this tension exists in the abstract space between Rosalyn's self-perceptions and how other 171 people see her. During my interviews with Rosalyn, she is still negotiating her position within a figured world of motherhood, realizing in this process that her disability serves as the impetus for multiple attitudinal barriers asserted by non- disabled women. Because of the centrality of mothering for Rosalyn, motherhood serves as the field 19 in which power can be further explored. Language As Power: "I Don't Do Anything" The use of language is a mechanism of communication, but it is also a potent source for the expression of power within socially constructed contexts. Not only can language be an assertion of power over another person, but language is also imbued with indices of one's own self-perceived social position within a given context. Holland et al. (1998) explicate how artifacts, performances, or even spaces can connote a certain theory existing within the person. Language genres are also intricately intertwined within these artifacts, performances, and spaces. Language is part of a theory-in-person, palpable in the expressions uttered in such figured worlds as that of motherhood. The language belongs to the individual characters in this world, but also belong to a broader context of social institutions existing as part of the socially figured landscape and terrain. Languages are in this way not divorced from context: The dialect we speak, the degree of f ormality we adopt in our speech, the deeds we do, the places we go, the emotions we express, and the clothes we wear are treated as indicators of claims to and identification with social categories and positions of privilege 19 See Chapter 2, p. 34 172 relative to those with whom we are interacting. (Holland et al„ 1998, p. 127) My intention is to establish that the implications of power embedded in language are critical aspects for consideration in Rosalyn's story. Many scholars and contributors to disability studies have long recognized that language, in its many forms, is imbued with varying implications for all parties involved in the communicative process. Embedded within utterances are subtle signals leading to people's relative (i.e., higher or lower; or more or less valued) position within a given relationp'- 'p at a given time. For instance, depending on the context and how an individual perceives h" or her uwn relative position, he or she might use expressions of a more or less formal nature, or a different choice of vocabulary. Although a comprehensive exploration of the complexity of power in lang, .ge use is beyond the scope of this chapter, I want to emphasize the need to recognize the presence of such forces: Bourdieu acknowledges, as did Bakhtin (1986), speakers' awareness of the differential social valuing of languages, genres, and styles of speaking, and he emphasizes 'he habitual, out-of-awareness assessments one makes before and during conversation: judgments of the linguistic forms that are likely to be valued, of one's command over those linguistic resources, and of the social privilege (or lack thereof) that a person of one's relative position has to employ such resources. The assessment reveals itself in the way speech is marked, leading the speaker to strained, self-conscious, "correct" speech of to effortless, unselfconscious sn<^,ch; to comfort or to discomfort; to voice or to si_w_• j. (Holland et al., 1998, p. 128i The significance of these ongoing "out-of-awareness assessments" and "speech markers" became apparent to me as I began to explore how Rosalyn seemed to 173 underrate her mothering activities when speaking to me. Even though mothering occupations were some of the most significant aspects of Rosalyn's life, the importance of these occupations were understated and minimized in her everyday language. For instance, during one of my initial interviews, 1 asked Rosalyn to tell me about her daily routine and about what she liked to do. 1 had certain expectations that her response might include something relating to leisure activities and paid employment. Instead, Rosalyn said to me: Being a mother and waking up every day, taking care of her [Rosalyn's daughter]. That's my life. Taking care of my daughter all day. It's an all day work. / don't do anything, [italics added] I just basically take care of her and if I have to go to the doctor, have an errand to run and sometimes I can't take her, she stays home and I go by myself. My parents help me out a lot. Although I did hear Rosalyn say that she spent the majority of any given day attending to the needs of her daughter, 1 believe that what I really heard at the moment was, "That's my life.. .1 don't do anything." Perhaps it had to do with Rosalyn's emphasis, or perhaps it was just a gap in expectation leading to shortcomings on my part. For reasons uriknown to mt, I had somehow tuned into the rhetoric of "nothingness," perhaps underestimating Rosalyn's level of engagement in occupation and the level to which she exercised her agency as a mother. At that moment in the interview I should i tuned into what Rosalyn was really conveying, namely, the meaning of being a mother and the significance of the occupations involved in mothering. In fact, within a short statement Rosalyn 174 actually gave me the synopsis and essence of the entire interview. She told me about her job, only it was not "paid employment." She explicitly told me, "Taking care of my daub..ter all day. It's an all day work." Rosalyn also conveyed in the same conversation that she felt fortunate to have assistance with child care from her parents. Rosalyn felt that her work as a mother was intense but that a degree of respite, provided by her parents, was available if needed. Over the course of the next several interviews with Rosalyn, i asked, among other things, how she spent her days, her perspectives on living with spinal cord injury, what it was like to be a mother, and how she saw herself as a person in the past, present, and future. Rosalyn would always provide an answer, but it was usually brief; for me, her answers often seemed to fall short of satisfying my inquiry and 1 continued probing for more details or rephrasing my questions to see if there was more to Rosalyn's words than 1 was hearing. I pondered the possibi'ity that I was missing something that was mysteriously hidden in the answers. It was through this process of mining Rosalyn's stories and reflecting on my own position as a researcher that I discovered subtleties lurking within Rosalyn's language, reflecting a lack of power. It was not only a matter of word choice but also a matter of how Rosalyn presented and framed her stories. In Rosalyn's vagueness and choice of words I found a dissonance between language and action Motheiing was so central and yet so peripheral in her descriptions. Based on Rosalyn's actual involvement (actions) with her daughter and the significance of these experiences for her, within the given context I expected the centrality of the 175 mothering experiences to be more emphasized by Rosalyn's language. Instead, Rosalyn downplayed the significance of her daily occupations with words such as "only" and "just," such as in the earlier quote, "Ijust [italics added]...take care of her." Moreover, by not sharing stories in their entirety or omitting details, Rosalyn displayed what I initially interpreted as a lack of substance (language) that showed ambivalence on her part abor.t the importance of the events conveyed. Of this kind of language among mothers, Bateson (1996) writes: When these women acknowledge that they have been working hard, they still talk as if they have been doing the same thing for 20 years, just being "a wife and mother." In tact, the shifts in skills needed to be a wife, a mother of a newborn, mother of a 2-year-old child, mother of a teenager, mother-in-law...are major job shifts, each one requiring new skills. If you wen* through that kind of shift of responsibilities in the corporate wcrld, you would get a new "title on the door and a Bigelow on the floor," and you certainly would not say, "I've been doing the same thing for 20 years, (p. 8-9) Metaphorically speaking, Rosalyn, with words, had been constructing a canvas of vivid colors and rich textures. I had only seen a two-dimensional black and white snapshot of the canvas, even though Rosalyn had been showing me in beautiful colors how being a mother was the single most central aspect of her life and her identities. Being a mother was a source of health, identity, pride, frustration, and routine consuming every facet of every day. Mothering was not only part of Rosalyn's identity, it was a world imbued with social and personal ideologies, power struggles, and an aspect of who she saw herself becoming. 176 I was perplexed by how I had missed the quintessence of what Rosalyn had been sharing with me, and about the way in which Rosalyn framed her answer to me, "I don't do anything. I just basically take care of her." Why was it that Rosalyn described taking care of her daughter as not doing anything? After many interviews with Rosalyn, I concluded for the moment that it was not a matter of Rosalyn believing that she did nothing but rather that she had either intentionally or "out-of- awareness" tailored her language to fit a certain social attitude towards mothering. My question about what Rosalyn did and what she liked to do had connoted an expectation of work and leisure. To that effect, Rosalyn had not seen her occupations of mothering as ork." Thus, doing nothing was in reference to "paid employment;" in fact, she later told me that she had "worked" previously and she would like to work again at some point in the future. Rosalyn also qualified her statement by saying that she "takes care" of her daughter. Her language and tone of voice conveyed ambivalence with regard to the significance of her occupations: "I just basically take care of her," as if this was a menial task when in fact that was not how Rosalyn felt about mothering occupations. The idea of needing an appropriate balance between work, rest, and play is commonly reflected ii. everyday conversation. In America, work has historically meant paid employment. In a repertoire of middle-class American occupations, leisure has also been a popular way to occupy time. For some people, staying at home could be interpreted as relaxing, while for others this might constitute "doing nothing." Child care, however, has somehow fallen outside this trilogy of work, rest, 177 and play. Child care by a parent is often not considered legitimate employment nor is it a leisure pursuit. It is certainly not rest. Mothering, as well as all "work" generally associated with home (Primeau, 1996), tends to fall into an undervalued and poorly recognized category of occupations 20 . Generally, researchers exploring occupations pertaining to mothering and the voices of mothers living with physical disabilities continue to be underrepresented (Cohen, 1998; Farber, 2000; Morris, 1995; Radtke & VanMens-Verhulst, 2001). In the scenario of Rosalyn couching her answer in such a way that seemed to understate the significance of mothering for her, it is possible that I was partially responsible for imbuing my own language with connotations biased by certain expectations. What became clear was that within Rosalyn's language there was a complex tension between the content of what she said and how she framed her response. The content in many ways was a representation of her past actions. In looking at my interviews with Rosalyn, her narrative was always infused with stories about her daughter, yet, as I have shown, the language she used frequently downplayed the importance of these moments. Scholars in disability studies have also recognized this complexity of power as manifested in language: However constitutive discourse practices are, we also recognize that language's effects are dispersed, uneven, and contradictory. People wield language for many purposes, but at the same time language's effects also spill or seep out, beyond the immediate container of the situation and "intent" for which it was crafted. 20 Although 1 have not made it my purpose to study mothering with disability, I hope that Rosalyn's story might stimulate future researchers to write about the occupations carried out by mothers who live with disabilities. 178 Language can only be partly harnessed as an instrument of agency, never wholly so, for it always carries along many other material histories and purposes and the arbitrary and differential traces of its systematic functioning. If language can be said to transform economic systems, institutions, and social practices, then its power flows diffusely in uneven currents (Wilson & Wilson, 2001, p. 3). During our interviews, Rosalyn and I revisited the topic of her becoming and being a mother. The topic would sometimes be intentionally broached by me, sometimes Rosalyn would tell a related story that was on her mind, and sometimes the topic of mothering would simply arise from an unrelated topic. The degree to which topics relating to mothering occupations were infused into most of our conversations offers an indication of how much motherhood meant to Rosalyn and to the shaping of her identities. Yet her use of language illustrated a certain restraint or self-limitation. A socially dominant discourse laden with undervaluing of mothering permeated Rosalyn's everyday language. Without realizing the significance of her own ianguage, Rosalyn afforded power and privilege to the people she most struggles against, to defend her position as a relevant character in the figured world of motherhood. Social Position As Power: "'You And I Have The Same Tasks Everyday" Another dimension of power that I want to discuss is that of social position. Despite the discernable disempowerment in Rosalyn's language, she felt strongly that she was able to go about her life like most other people, with or without disability. Rosalyn is not alone in feeling this way. In a qualitative study of 10 179 mothers living with various disabilities, Farber (2004) outlined several themes from her data. Farber (2004) found that some mothers with disabilities felt "just like other mothers." She quoted one participant saying, "There is no difference between me and Joe Blow over there, except for I have a little disability. But the disability does not stop me from being the parent that I am - the good parent that I am" (p. 201). The participant in Farber's (2004) study echoed many of the same sentiments that Rosalyn expressed, namely her focus on "no difference" and being a "good parent." Moreover, in saying that, "the disability does not stop me from being the parent that I am," the participant in Farber's study alluded to occupations of mothering. It is the fundamental experience of engaging in occupations together with her child that is most important and exists as the essence of this discourse. Rosalyn, too, often made reference to how she was no different and how all mothers have the same kind of issues to address. Rosalyn said, "You know, 1 think every parent feels the same way. You would do anything for your kid and you want the best for them and they're a lot of work, really hard, you know, really hard!" 1 believe that it is important to point out that Rosalyn stated, "every parent," meaning with or without a disability. Rosalyn did not find a need to qualify "mother" as either "mother without a disability" or "mother with a disability" because motherhood and mothering for Rosalyn transcended her experiences of disability. In moments when Rosalyn expressed herself as a mother, she was living out positional and figurative identities as a mother. However, for Rosalyn, being a mother had to do with mothering, or the occupations that mothers do. For Rosalyn, 180 these occupations remained consistent along a storyline of a figured (narrativized) identity situated as part of motherhood. In her own words, Rosalyn asserted, "every mother feels the same way." Holland et al. (1998) differentiated between figurative identities and positional identities. To reiterate briefly the difference between these two types of identities: Positional identities have to do with the day-to-day and on-the-ground relations of power, deference and entitlement, social affiliation and distance - with the social-interactional, social-relational structures of the lived world. Narritivized or figurative identities, in contrast, have to do with the stories, acts, and characters that make the world a cultural world. (Holland el al, p. 127). Thus, Rosalyn's identities as a mother within the figured world of mothering are significant in as far as she is recognized for the occupations enacted by the character constituted by a mother within this realm. Her actions define her as a mother, and are accorded with certain status as part of these narrativized identities. In Rosalyn's case, however, she is constantly reminded that within the narrativized storyline of mothering, there are more and less valued mothers, performing more or less valued ways of mothering. It is during the moments when she goes about her daily routine in the community and faces direct slights to her identities as a mother, that positional identities become a relevant tool for the analysis of "on-the-ground" power struggles. I will elaborate on this concept next. Rosalyn saw her disability as a minor inconvenience, but did not see her disability as something limiting her from participating in what she wanted to do, nor 181 did she define herself by her disability. For instance, constructing and expressing her identity as a mother revolved around occupations with her daughter rather than limitations relating to her disability. Whatever challenges being a mother presented for Rosalyn, she interpreted as aspects of mothering rather than disability: It's not so much being in the chair, like people always telling me, "Oh, it must be hard for you." I'm like, "No!" I'm sure me and you have the same tasks everyday, we just have to go through the same things everyday, regardless. But you're standing and I'm not. We still have the same things to deal with everyday. As Rosalyn moved around in the community, however, people reminded her of this perception. This immediately threw Rosalyn into a position ot uisempowerment, but she quickly worked to reposition herself. Rosalyn was surprised because she generally forgot that other people occasionally perceived her as a woman using a wheelchair and in doing so doubted her fertility or questioned her ability to engage in mothering occupations. Rosalyn acknowledged that people without disabilities might not understand what it is like to mother with a disability. She did not blame people for a lack of knowledge, but she was quick to assert her lack of patience and tolerance for ignorance displayed by random people in public places, especially when remarks pertained to possibilities of motherhood or mothering for persons with spinal cord injury. It is within this gap in perception between how Rosalyn views herself and how others view her in the community that Rosalyn confronts the inner workings of power in relation to social position. Holland et al. (1998) use the phrase 182 "positional identities," to explicate a person's relational position to other people within a given context: .. .a person's apprehension of her social position in a lived world: that is, depending on the others present, of her greater or lesser access to spaces, activities, genres, and, through those genres, authoritative voices, or any voice at all (Holland et al, p. 127-128). Within the context of motherhood for Rosaiyn, the relevance of positional identities exists in social interactions when she is challenged by other mothers regarding her maternity and ability to engage in mothering occupations. On one occasion, Rosaiyn was with her daughter at a friend's party. During the party, someone approached Rosaiyn's friend to inquire about whether Rosaiyn was "the mother" and how it was that she managed to care for her child given her spinal cord injury. The discussion took place within Rosalyn's hearing distance. According to Rosaiyn, this was not an inquiry of general curiosity but rather plain ignorance. As the exchange continued, Rosaiyn approached and entered into the conversation. At this point, Rosaiyn was subjected to a bombardment of questions, but what she focused on was the question pertaining to how she gave birth given her spinal cord injury. Rosaiyn: Nc, because she was like, "How did you have her?" You know? EA: So it was different...she was not really asking you "How was your childbirth?" She was asking, "How did you do that?" Rosaiyn: Due to my condition, how was it possible? EA: I see. 183 Rosalyn: Yeah. That was her, like, concern. EA: So, how did you answer her? Rosalyn: The same way you do [baby cries in background]. EA: The same way I did? Rosalyn: I said, "The same way you do." I told her, "The same way you did." In the process of questioning Rosalyn about her ability to become pregnant and carry her pregnancy to term, the woman was slighting Rosalyn's position in the figured world of motherhood. In this encounter, Rosalyn was faced with a tension between how she perceived herself and how someone else saw her. I have already illustrated how, for Rosalyn, learning that she was prtgnant was the opening into motherhood. Rosalyn did not, and had not, seen herself as any less of a woman or a potential mother because of her spinal cord injury. In fa^t, Rosalyn was proud not only to be a mother, but also to be a "good" mother. Hence, this incident became one of several in which Rosalyn began to negotiate her positional identities as a mother living with a visible disability. As I described earlier, there is a dominant American ideology about what constitutes motherhood and subsequently what constitutes "good" mothering. Aligned with this ideology of motherhood are "dialects," "formalities," "expressions," "clothes," and in general, a plethora of recognizable identifiers that serve to symbolize and signal relative position within and between worlds of motherhood. In many ways, the mothering hierarchy is very normative, thereby 184 placing most mothering occupations along a continuum of norms. On one end of this spectrum, some acts of mothering will be deemed "bad," while, on the other end some acts will be deemed beyond expectations of "good." The mothers who can regularly perform at the "good" end of the spectrum become a sort of icon of mothering. Mothering with a disability has tended to fall outside of this spectrum altogether, landing in an area grossly neglected. For many years and, in fact, even in today's social climate, there is still an undercurrenr of beliefs denoting a sense that living with a physical disability results in an automatic exemption from the possibility of mothering (Farber, 2004). However, the fact that physical disability has in recent years been repeatedly shown to have little bearing on the fundamental ability or experience of mothering (Grant, 2001). Thus, it is within this gap that I continue to pursue the topics of relational or positional identities. Each time Rosalyn entered the community with her daughter, she exposed herself to the misperceptions of others. Rosalyn became cognizant of the attacks to her position as a relevant character in the figured world of motherhood, and immediately fought each challenge with words. F Hand et al. (1998) draw from Bourdieu (1990) to explicate the undercurrents of power and the effect that this has in the daily relations between people from varying degrees of relative privilege: Bourdieu is careful to point out that the Kabyle man's protection of his status in honor, and the indicators of honor itself, goes on in a largely automatic way...Bourdieu focuses on the embodied dispositions developed among Kabyle men to protect their honor. He details how adult men, in ways beyond their awareness, maintained a constant vigilance for slights 185 to their honor. They noticed and were ever . kely to react to social claims made by others of greater honor, and they worked indefatigably to refuse the positions of inferiority afforded them by those claims. Social positions, in other words, become dispositions through participation in, identification with, and development of expertise within the figured world (Holland et a), p. 136). Rosalyn certainly maintained this type of vigilance - as did Wesley - as she surveyed remarks that might be construed as slights to her relevancy in the figured world of motherhood. Rosalyn shared with me an encounter from a visit to the bank. Her telling of the story remains vivid in my mind. Rosalyn was sitting on her bed. as I had described earlier, quiet and with a downward gaze. As she remembered the story, her tone of voice suddenly was filled with emotion as she shifted from her gentle disposition to one of more slicing sarcasm. Her facial expressions were suddenly animated and the way she told the story filled my mind with images of how the event had transpired: Just that people staring, but you know what, you learn to live with that, I guess. To this day, people still stare and strangers still come up and ask you questions. Especially sometimes when I'm with my kid, you know, they're like, "That youi kid?" and I'm like "Yeah" you know. It's just, strangers, people I've never seen, I'll probably never see again and you know...and, "Oh my God, how did you do it?" Like the other day, I went to the bank, and the lady that works there was like, I was filling out some papers, and she's like, "Oh my God, how did you have a baby?" And I was like, "The same way you would, you know, I mean, we're the same. The same way!" "Oh it's amazing to me." Ajd I said, "Why?" And she said, "Well, how do you take care of your kid?" I said, "The same way you would," you know. I said, "The 186 same exact way you would." I said, "The same way I take care of my child, you know." She was like, "that's it?" I don't know, maybe she felt.. .I'm not going to ask anymore, but that was the answer I gave her. For Rosalyn, these types of assaults to her identities as a mother and now to her ability to care for her daughter were not isolated incidents. In a few short months, Rosalyn told of three encounters in public where people displayed surprise at the fact that she was a mother, and in the event of displaying surprise, challenged Rosalyn's womanhood and motherhood. The women who confronted Rosalyn, whether at the party or at the bank, convey through their tones of voice and the manner in which they spoke, a sense of self-perceived social dominance: No matter what one person says to another, there is always more to the message than its semantic content. How the message is said - through accent, tone, or tempo, what language or dialect it is said in, what style (formal or informal), what mode (whether phrased as a question or command) - all these index the relationship among speaker, addressee, and audience and constitute signs of the speaker's claim to social position. (Holland et al., 1998, pp. 11-12) In the cases from the party and the bank 21 , there are at least two issues at play. First is the issue pertaining to fertility - how Rosalyn, a woman with a spinal cord injury. can actually physically conceive and deliver a child. Second is the issue relating to 21 1 pondered these events for quite some time. 1 thought about someone approaching Rosalyn (or anyone for that matter) to inquire about how she had a baby. In a brief moment of reflection, the whole scenario seemed ludicrous. Did the woman at the bank not realize that her actions were rude or at the very least socially inappropriate? If a mother comes into a bank with a visible physical disability, does it suddenly provide an open invitation to inquire about personal matters of fertility, childbirth, or mothering, and at that with an expression of disbelief that it would even be possible? Or would it be appropriate to doubt the person's parenting skills? 1 believe that the answers to the questions 1 pose are self-evident. What remains shocking is that these are the attitudinal barriers that people with disabilities (members of misunderstood minority groups) face on a daily basis. 187 occupations of mothering, how Rosalyn as a woman with a spinal cord injury can care for a child. The concept of "fertility" or "childbirth" is challenged by expressions such as "How did you have her?" or "How did you do it?" Similarly, occupations of mothering are conceptually challenged by such expressions as "Well, how do you take care of your kid?" Statements such as "That your kid?" take on a more ambiguous nature in this context because, unless clarified, it is unclear whether the question gets at fertility, childbirth, or mothering. Although at first these encounters seem merely rude and inappropriate, these are in fact socially rooted assaults to another person's position in a given figured world, in this case, • iat of motherhood. Moreover, these are examples of tensions that exist in the interactions between Rosalyn and other women. Ironically, these tensions typically arise amid occupations of mothe r ing. In summary, for Rosalyn, constructing an identity around being a mother is situated in a certain set of expectations from historical experiences and collective ideologies about what it means to engage in occupations of mothering. Because Rosalyn had not until recently had this experience, her expectations perhaps stem primarily from first being a daughter, playing with children, and from hearing about mothering through the stories told by friends. As Rosalyn takes on an identity constructed and expressed through mothering occupations, the world of mothering takes on new meaning and is gradually re-formed to reflect Rosalyn's social context. As she negotiates her identities, Rosalyn is constantly experiencing the power 188 indicative in her language and as illustrated by the challenges to her position as a mother. Chapter Summary Rosalyn illustrates how she constructs and expresses identities through occupations within a figured world of motherhood. This world not only has boundaries defined by artifacts, ideologies, and storylines, but is also defined by the activities that its members enact. I have referred to these activities as occupations of mothering. For Rosalyn, becoming a mother involved giving up drug use, taking vitamins, beginning to exercise, staying active, and learning how to take responsibility. I had been perplexed by how Rosalyn had completely surrendered her participation in a world of drugs, something so ubiquitous for so many years. Rosalyn's transformation in going from a life completely consumed by acquiring and using drugs to a life completely consumed by mothering was remarkable. Over time, mothering came to involve preparing meals, going to the park, performing ADLs, going to the doctor's office, and playing, among other occupations. Within Rosalyn's world of mothering, she was a capable mother who creatively adapted to the challenges brought forth in her everyday interactions. Rosalyn illustrated how identities constantly undergo shifts and social positioning, and how the boundaries of her social milieu were constantly being challenged by the tensions and breaches born out of public misperceptions. The occupations of mothering, made explicit through my interviews with Rosalyn, were 189 inseparable from notions of constructing and expressing identities. At the same time, mothering was also inseparable from ideologies of social power and position. Motherhood served as the transformational event that moved Rosalyn from a life completely consumed by drug-use to a life completely consumed with mothering. Therefore, the centrality, significance, and full meaning of mothering for Rosalyn only became evident when placed against the backdrop of her history with drugs and outside perceptions about Rosalyn as a mother with a disability. Power was a significant aspect of negotiating identities for Rosalyn. The power inherent in positional identities had to do with behaviors as indices of claims to social relationships with others (Holland et al., 1998). Rosalyn's relative position as she interacted in her social worlds was manifested in her use of language, By understating her own participation in mothering, Rosalyn engaged in discounting and self-limiting her own power in social relationships. I have argued that this was not an intentional act on Rosalyn's part, but rather something embedded within the socially constructed worlds in which she carried out her occupations. In this way, Rosalyn had to filter her inner experiences against the power dynamics embedded in the outside social world. Rosalyn exemplified how her identities as a mother were deeply rooted in occupations rather than a socially prescribed role. It was within the context and the experiences of her everyday negotiation that Rosalyn rejected self- images of disability and challenged what some deem common sense. Rosalyn said, "We're all the same," and although her story illustrates how we might all have a similar need for occupation, her story illustrates how people are so uniquely 190 different. Her approach to constructing and expressing identities through occupation are an explicit example of how Rosalyn refutes the ordinary within discourse about mothering and disability, and instead offers a glimpse into the power of occupation played out in one woman's life. 191 CHAPTER 6 Sam's Story Over the course of this study, I got to know Sam through interviews, but I also had chances to interact with him through shared occupations such as dining, billiards, and taking walks, "wheeling 22 ." 1 had the opportunity of seeing Sam in his home, at his work, and in various community settings including restaurants, a local park, and a convention center. The time I spent with Sam during interviews was critical in understanding his point of view. However, the less structured and more improvisational interactions that were embedded in occupations, proved pivotal in revealing perspectives critical to his narrative. His story, as the story of each participant in this study, is multi-faceted and complex. Sam's actions and words carry potency, providing a glimpse into a discourse about rejecting disabled identities. Sam lives out his identities through occupations, often among communities and friends that are non-disabled. As Sam expresses and negotiates these identities, it is often against a backdrop saturated in discourses of disability, discourses that are the antithesis of how Sam sees himself. Sam's narrative illustrates how it is ultimately through occupation that he expresses his identities. Moreover, it is within the moments embedded in occupations where Sam's identities are negotiated. As Sam is challenged by discourses within and around him, he is refigured and repositioned in his world. In Sam's story, I continue " Sam used "wheeling" as an alternative term to refer to ambulating in a wheelchair. 192 to explore how shifting between figured worlds affects his social position. I continue to draw upon disability literature to inform the social discourses impacting the shaping of identities. 1 will also draw on concepts of authoring from the works of Bakhtin (1981) as well as Holland et al. (1998) to extrapolate the idea of dialogism and how this concept can further an understanding of dominant disability discourses in Sam's construction of present and future identities. Sam's story will thus serve to better understand the processes of constructing and negotiating identities through occupations within multiple contexts and within rubrics of disability discourses. Meeting Sam The first time I met Sam, we got together at his workplace on a Saturday afternoon. When I arrived at the company parking lot, I noticed that there were several entrances to a building that looked like a warehouse. I parked and walked around the building looking for a sign, perhaps an open door, or an indication that someone was inside. When I approached a door near the corner of the building, I noticed that it was slightly ajar and that the lights inside were turned on. I peeked in and called Sam's name. I could hear what I assumed to be Sam's voice telling me to have a seat inside and that he would be right out. I entered and sat down in one of the chairs inside. It was a reception area and there were two small office desks, both furnished with a telephone, a computer, and stacks of papers. Between the windows along the wall, there were bookshelves with manuals, brochures, and piles of loose paper. The two desks were separated by a doorway that led to another area that had more office space as well as what looked like a lounge area. As I waited, my overall 193 impression of the immediate space was that it appeared somewhat cramped, disheveled, and in need of an ergonomic overhaul. Sam had spent this Saturday organizing his office, completing tasks that needed to be finished, before his upcoming trip abroad to visit his fiance. Given the amount of work that Sam seemed to have, I was grateful that he agreed to meet with me. I had been waiting for about three minutes when Sam came out from the back office area, where his office was located. He was wearing a dark solid-colored, short-sleeved shirt, blue jeans, and tattered white sneakers. Sam had dark, natura^y-graying hair that he wore combed back. He invited me into an office area that was substantially larger than the first. As we sat down, Sam began to tell me about his spinal cord injury. "I Think I Broke Mv Neck" Like many other Americans who have acquired a spinal cord injury 23 , Sam fractured his neck in a diving accident. On the day of his accident, Sam and his friends had rented a property by a river and planned a party. The property featured a single family home and a private lawn leading down to the river. There were about twenty people, eating, drinking, and playing football, Frisbee, volleyball, as well as swimming that afternoon. It was amidst this jubilant atmosphere that Sam sustained the injury to his neck. Sam was at the end of the dock, drying off from a swim. He was kneeling down, drying his legs, when he heard someone approaching. As he " J Although the landscape of spinal cord injury statistics continues to change, sports have generally been the fourth leading cause of an incomplete or completely severed cord, and 66% of sports injuries have been from diving. The overall leading cause of spinal cord injury continues to be vehicular accidents but violence is a close second. Falls are the documented third leading cause (http://w-.vw.cureparalvsis.org/statistics, August, 2004). 194 stood up, he turned to find his friend approaching with his hands full of sand. Sam dove off the dock. It was not a calculated dive but rather a sudden unconscious decision to escape a friend's joking "attack." In retrospect, Sam said he didn't know why he jumped. Normally, he would have much sooner risen to a challenge and battled his friend than to have jumped in an effort to escape: When I came up, there was my friend holding a bunch of sand and he was going to nail me and I was, like, right here on the dock. So I just turned around and I went like this [diving gesture with arms above head] and I was like...uh-oh...you know, this isn't really where I need to be diving, and so I sprang out parallel with the water, you know, 'cause I knew I had to do it just right, you know, 'cause I knew that I was in shallow water. And I did, and everything was fine, but then when I went down, my head hit the bottom in that little sandbar and, umm, you know, that is when it happened. I still can't believe that I turned around and dove, you know., .normally, it would have been on, you know. If I would have seen that, I would have grabbed you.. .and we would have been on you know. I don't know where my mind was that, that day. I obviously wasn't thinking. Sam remembered his injury clearly and said that he never lost consciousness. I asked Sam to describe what he remembered from his injury. His response left me with a vivid image and I remember being speechless for a moment, imagining how it must have felt to be lying on the bottom of the riverbed waiting and hoping for help: As soon as, I knew, I mean, I knew I was diving into shallow water...it was like, feet. When I went down and I ran into something.. .my head, I was just so relaxed that my head went into my chest and I heard.. .1 heard my ribs snap, snap, snap, snap. And my body was just like hitting a gong; it was like a lot of vibrations. It seemed like I was in the atmosphere, 195 like, floating, floating in the atmosphere for a minute. My body was just vibrating and I ended up lying on the bottom. I was just, like, lying on top of my legs. I could move my shoulders like this [shrugging his shoulders] but I could not move my arms, I could not move my legs, I couldn't get my head up from the sand, I could move it left and right but I could not lift it. I just lay there on the bottom, I mean, I knew I broke my neck but I did not realize what happened actually, I didn't realize that I was paralyzed. It's kind of funny, because I told a friend 2 weeks before that that I was going to have an accident like that. Sam referred to the event as an "accident;" however, it is worth noting that Sam believed that everything happens for a reason and that his injury was no exception. Thus, ''accident" for Sam was a descriptor, and matter of event, rather than something connoting coincidental misfortune. He felt guilty about things he had done in the past. Sam defined the guilt for his past actions as something for which he would pay retribution; in his own words, "A guilty conscience over all this little stupid stuff that I did even if I got caught for it.. .1 just felt like God was going to punish me, you know, for all that stuff." A couple of weeks before the party, Sam had shared these thoughts with his best friend, thoughts about sensing something bad in his own future. Sam recalled lying on the bottom of the riverbed. What was going through his mind at the time was that, "they think I'm playing." In fact, Sam's friends did think tha' he was joking, especially his best friend, since it had only been a couple of weeks since Sam had told his friend about his premonitions. Sam said, "They all thought that I was horse-playing, holding my breath or something." After what 196 seemed like an eternity to Sam, his friend jumped in to rescue him. Even then, his friend still didn't truly believe that Sam was seriously hurt. When he picked me up out of the water, I was hanging on his arm.. .he picked me up.. .1 was like a wet towel. I was just like a wet towel hanging on his arm and I said, "Hey, get me out of the water; I think I broke my neck." And he's the one that I told 2 weeks earlier. "No, you didn't," he said.. .he thought I was bullshitting or something. "No, you didn't," he said.. .he started lowering me back into the water and, I mean, I was lifeless. At this point, Sam's friends realized that this was not a joke, and someone called for an ambulance. Sam was taken to the emergency room and found to have a mixed incomplete/complete spinal cord injury. From that day, Sam would receive treatment in intensive care, acute care, and finally rehabilitation before transitioning back into the community. "Thev Forgot Mv Wheelchair" Once back home, Sam rejoined a community of friends. Sam told how he learned to become so proficient in doing things for himself that his friends forgot about his disability. This was particularly powerful for Sam. I do not mean to imply that maintaining friendships was especially unique or unusual as such, but that for Sam reintegration was also about remaining relevant as an "able" friend. Representing himself as "able" was not only a matter of outward projection for Sam; it was also a matter of introspection into an orchestration of his identities. Sam shared one incident that occurred after returning home: 197 I would jump in the passenger seat or whatever, and we'd take off, and maybe we were going to the restaurant, maybe it was one of our birthdays, and we would always get together for our birthdays. And I always sat shotgun, right, and everybody falls out of the car, and I'm fucking sitting there, waiting, waiting, fucking looking around, and everybody's fucking gone. I mean, everybody's, "where's Sam?" They totally forgot to get my wheelchair out of the trunk to let me out of the car. They just completely forgot, which is kind of a good thing [italics added], kind of, you know, but I thought they were fucking with me, but they swore up and down, they swore up and down to this day, you know, "We just, we don't know where our mind was at, you were just, we just piled out of the car, and, you know. And we just figured that you filed out, too." I go, "I would have filed out too had you given me my damn wheels." In saying, "which is kind of a good thing," Sam exemplified his pride in being momentarily perceived by his friends as "able to exit the car independently," even though in this instance he did not. Equally as significant within this event, however, was how Sam exemplified his initial bridging and maintenance of i^"entities embedded in friendships established before his injury. It would have been conceivable that after his injury, Sam's friends could have refigured him as a disabled man or as a disabled friend-thrusting him into a realm of disability rather than friendship. Sam expended much mental and physical energy after his injury to connect multiple aspects of his identities within the coherence of a storyline of liend^hips, but also more broadly within the different social realms that he was traversing. Sam was not going to let his wheelchair prevent him from continuing to 198 participate in occupations with his friends, including going to restaurants and celebrating birthdays. Throu<]/.» this process of participation, Sam learned to bridge aspects of the life that he knew before his injury to a life that yet remained ahead of him. He wove his past into his future so as not to lose at least part of his sense of identities. In this way, Sam came to feel that he was no differently able to participate in personally meaningful occupations and that he was a man of abilities rather than disabilities. For Sam, being "able" was expressed in his actions and in his words as part of his demeanor. The depth of this self-perspective became clearer when contrasted to Sam's feelings about other people with disabilities, revealing prejudices dwelling underneath the surface, unnoticed at first glance. "I Don't Like Being Around People in Wheelchairs" One day, Sam and I had finished eating lunch at a nearby restaurant following a morning interview. As we were exiting the restaurant, Sam looked out across the parking lot and spotted a man in a wheelchair - a man appearing to be having difficulty negotiating one of the sidewalk curves. Sam made a comment to the effect, "See, that's why I don't hang out with disabled guys." Without much time to reflect upon his comment, I was not quite sure what Sam meant. However, I felt as though something important had just transpired. Sam had made his comment with great conviction and at the same time casually slipped it into our dialogue as if I would somehow know what he meant. I did not. In the introduction of this chapter, I wrote that ? /me of the most pivotal junctures in revealing Sam's perspectives often 199 arose out of moments embedded in occupation. In this moment outside the restaurant, which was both unplanned and unexpected, Sam set into motion a discourse rooted in perceptions of disability. Although these perceptions were his own, Sam had adopted them through a process of internalizing a perpetuated, inherently social notion of disability. Furthermore, at some level ingrained in this process, Sam experienced a sense of conflict. Sam and I sat down at a patio table and I asked Sam about his comment. He explained: It's really weird, though, I remember telling somebody, "I don't like being around people in wheelchairs for the most part, a lot of, I don't like being around a lot of disabled," you know...You know what, you know what's weird Eric, is you just brought up something that's funny.. .see, when I see somebody else in a wheelchair, I consider them disabled. You know, and I feel for them, I mean, I know, I know, I don't think of me in a chair, I don't think of myself like that, I'm different than they are, it's different. I'm not above them, it has nothing to do with me being above them or anything, but, but you know, I mean, you know, you know, hey, if they need help, I'll go help them, you know. Sam said, "you just brought up something funny," realizing within him, even for a fleeting instant, a clash between his self-image and perceptions of others or the image that he thinks others have of him. Sam was pummeled into a discourse about perceptions of disability and self-identity. I was puzzled by Sam's negative response to the man across the street and even more by his seemingly ambiguous feelings about the general disability community. Sam clearly distanced himself from what he considered a broader disability community in saying, "I don't think of me in a chair, I 200 don't think of myself like that, I'm different than they are." Sam's comment made me curious about what disability meant for Sam and how he positioned himself within this and other contexts. I wondered what it was that Sam felt made him "different." When I asked, Sam responded: I like being around confident people.. .It's like, some guys in chairs, you know, you'd think they'd never ever saw a woman before in their life, you know. It's, like, you go out with some of these guys and it's so embarrassing you know, I mean, uh, and, um, I don't know, I consider myself different than disabled people;, other people that I see, I don't consider myself disabled. Albeit unfortunately typical in many American contexts today, Sam's thoughts bordered on being arrogant and certainly might be considered somewhat insensitive in some social circles. Insensitivity toward people with disabilities, however, was not a characteristic that I would have chosen to describe Sam. In fact, Sam had previously talked about wanting to volunteer at an elementary school to share his experiences with children, regarding what life was like with spinal cord injury. Moreover, Sam spoke of wanting to create a children's book featuring people with disabilities in order to improve and diversify the imag of someone who might live with a disability. Sam wanted to share, that although he was a person with a disability, he was not necessarily so different from someone non-disabled in that he participated in things like work, school, athletics, went out with friends, and was involved in a romantic relationship, all things that were generally considered unconceivable for a person with a disability by the non-disabled community. Sam 201 had also talked about wanting to improve accessibility by citing public facilities that did not meet Americans with Disabilities Act (ADA) regulations. He had even taken a class to learn more about the ADA in order to be better able to perform this task. I realized that it was not about the man across the parking lot needing help, or even about not wanting to associate with people who had disabilities; it was about what the man across the parking lot represented and symbolized for Sam. As I explored what Sam was trying to say, I became conscious of an intricate web of social threads that represented an obscure prejudice in Sam, hidden from his own self-reflections but also disguised in a set of broader social forces. Within Sam there was inner conflicts entangled in this crosscurrent, challenging his sense of identities as a strong, able, and socially desirable man. Based on observations of other men with disabilities, Sam connected disability with what he deemed a certain social awkwardness. In interpreting this awkwardness as something associated with disability rather than something having to do with individual personality, Sam came to feel distance toward an entire group of people represented by the man across the parking lot. In essence, Sam unwillingly perpetuated the discrimination that he himself so profoundly wanted to eliminate. Disability: A Dominant Social Voice The man across the parking lot is for Sam a gateway into a plurality of voices being orchestrated, what some have called languages of heteroglossia (Bakhtin, 1981) and aspects of the dialogic self (Holland et al., 1998), both essential constituents in matters of self-authorship. Simply stated, "authoring" has to do with 202 making sense of the worlds that we inhabit and our position in these worlds, while the actual mechanisms of authoring are multi-faceted and conceptually much more complex. The rejection of disability exists within Sam as voices of socio-historical prejudice deeply rooted in discourses existing beyond conscious thought. I will illustrate that myriad discourses, three in particular, are paramount in the construction and expression of identities for Sam. Authoring is in many ways a social mechanism. We draw from socially formed and perpetuated discourses circulating within the figured words of which we are a part, and over time we internalize some of these discourses while rejecting others. However, these discourses are also weighed against our past and ongoing stream of experiences that we interpret as meaningful. In this process, we form perspectives about the world around us as well as about ourselves, while reflecting these discourses in our occupations and identities. Self-authorship does not occur in the absence of social tensions and pressures, nor does it happen as a creative process situated solely within the person (Bakhtin, 1981; Holland et al., 1998). Rather, we construct our sense of identities from preexisting social movements, practices, and discourses. Holland et al. (1998) write: In such a diverse and contentious social world, the author, in everyday life as in artistic work, creates by orchestration, by arranging overheard elements, themes, and forms, not by some outpouring of an ineffable and central source. That is, the author works within, or at least against, a set of constraints that are also a set of possibilities for utterance. These are the social forms of language that Bakhtin summarized: 203 dialects, registers, accents, and "speech genres." (Holland et al„ 1998, p. 171) The movements, practices, and discourses exist as outside speech (social speech) and belonging to a social collective, but over time can be internalized (inner speech) as voices of others reverberating within us, and at times drawn upon to express identities comprehensible to ourselves and others. Social discourses are in this way internalized as forms of inner speech, subjected to orchestration so that identities can be realized and expressed. Inner speech is not disconnected from social speech; it is an internalized discourse within the person resulting from the trafficking of "social speech to inner speech" (p. 186). Over time this trafficking becomes a bilateral function. Orchestration of voices should not be taken as a type of psychosis, but rather as a natural tension between how Sam sees himself and how he knows other people see him. The "dialects, registers, and accents," the words of the other, contribute to what I refer to as a dominant discourse on disability. Linton (1998) writes how such dominant discourses are pervasive throughout American society, lingering in social policies and practices revealing systematic marginalization of people with disabilities. Linton (1998) describes how images of people who live with disabilities are distorted. The phrases wheelchair bound or confined to a wheelchair are frequently seen in newspapers and magazines, and heard in conversation. A more puzzling variant was spotted in Lingua Franca, which described the former governor of Alabama, George 204 Wallace, as the "slumped, wheelchair-ridden, 'Guv'nah.'" (p. 27) Moreover, a socially dominant perspective about disability is readily palpable via media such as movies, television, radio, advertisement, and everyday speech (Longmore, 2003). In, Why I Burned My Book and Other Essays on Disability, Paul Longmore explicates images of disability in the media as follows: Motion pictures and fictional television frequently depict handicapped people as bitter and self-pitying. Whether a blind woman or an amputee surgeon on The Love Boat, a wheelchair - using mechanic on Happy Days, a blind farmer's son or Elmonzo Wilder recovering from a stroke on Little House on the Prairie, or a paraplegic former gymnast on Diff'rent Strokes, disabled people are inevitably shown to be angry and obnoxious, wallowing in self-pity and unwilling to take responsibility for themselves. (Longmore, 2003, p. 123) The media here serves as an example of the voice of the "other." Furthermore, images in the media of people with disabilities have a tendency to be blurred into a sort of hybrid image of a disabled person who is a hodgepodge of medical conditions, usually completely unintelligible. Take, for example, the 2002 movie Pumpkin, starring Christina Ricci as a shallow sorority girl and Hank Harris as "Pumpkin," an athlete who is depicted using a wheelchair and as having mental retardation. At the beginning of the movie, Pumpkin is portrayed with difficulty speaking and as grossly immobile. By the end, he speaks with occasionally fluent speech, dances, sprints a relay race, and wins the love of the shallow sorority girl. The point I want to make here is that Pumpkin is described as "mentally retarded," 205 something having nothing to do with his portrayal in a wheelchair. The uninformed audience is left with the impression that people who are mentally retarded use wheelchairs, or that people who use wheelchairs are mentally retarded, either way a clearly misguided analogy that leads to what some have called a "spread effect" (Gartner & Joe, 1987). The depiction of people in the media and in social discourse is a powerful venue through which people form ideas and meanings about themselves as well as others. Although misguided, the portrayal of disability in popular media perpetuates misconceptions about people with disabilities and thus contributes to the ongoing marginalization experienced. In viewing the images on the screen, and in recognizing a portrayal of oneself, a person with a disability may begin to see him or herself from the perspective of the other. For Sam, the voices grounded in discourses about disability pulsate within him as he negotiates what it means to live with a spinal cord injury. In Bakhtin's (1981) words: This process - experimenting by turning persuasive discourse into speaking persons - becomes especially important in those cases where a struggle against such images has already begun, where someone is striving to liberate himself from the influence of such an image and its discourse by means of objectification, or is striving to expose the limitations of both image and discourse. The importance of struggling with another's discourse, its influence in the history of an individual's coming to ideological consciousness, is enormous. One's own discourse and one's own voice, although born of another or dynamically stimulated by another, will sooner or later begin to liberate themselves from the authority of the other's discourse. This process is made more complex by the fact that a 206 variety of alien voices enter into the struggle for influence within an individual's consciousness... (Bakhtin, 1981, P. 348). Even though Sam refers to himself as a man who uses a wheelchair and in fact as someone who is disabled, Sam does not define or project himself as "Disabled," as in unable or lacking the ability to be engaged with others. As will become apparent, Sam strongly rejects what the broad category of disability tends to connote and most importantly for him, what "a disabled person" implies about him, something that is the exact opposite of how he identifies or expresses himself. In this way, Sam's construction and reshaping of his identities is intricately linked to circulating discourses on disability as well as the social context in which his identities are expressed. In other words, Sam hears the dominant social discourses within him, challenging him and comparing him to an arbitrary norm. Holland et al. (1998) write about a woman, Sandy, who perceives herself as a respected member of her community and as someone who takes pride in not conforming to the mainstream social rules around her. Likewise, Sam sees himself as a respected member among a community of friends as well as a romantic partner and a reliable employee, among other things. When Sandy moves to attend college, she is faced with criticisms deeply embedded in the social norms of the college community. She finds herself socially ousted for cursing when she is angry and for not wearing appropriately "preppie" clothes. Holland et al. (1998) provide a theoretical interpretation of her experience. 207 As she reported her thoughts and feelings, the criticisms were remembered in (took on) the voices of her peers. She seemed to reexperience the comparison of herself to an ideal through the questions and criticisms of her peers. These critics had become an "internal interlocutor," which invidiously compared her to the ideal and to whose charges she formulated answers and defenses, (p. 179) Similarly, Sam sees himself as an able man who carries out his life in a way not too different than before his injury. Just as Sandy faces criticisms in her new college environment, Sam faces the socially constructed criticisms from the non-disabled outside community. These criticisms become voices that are grounded in social policies, journalistic writing, and other media. The voices of the non-disabled collective majority become the internal interlocutors that remind Sam of his disability. Entering into dialogue with and orchestrating these voices is a critical aspect of identity construction. Holland et al. (1998) write, "If, to be perceptible by others, we cast ourselves in terms of the other, then we do that by seeing ourselves from the outside. That is. we assume a position which Bakhtin names 'outsideness' or 'transgredience'" (p. 174). Furthermore, in Bakhtin's (1981) words: Language, for the individual consciousness, lies on the borderline between oneself and the other. The word in language is half someone else's. It becomes one's own only when the speaker populates it with his own intention, his own accent, when he appropriates the word, adapting it to his own semantic and expressive intention, (p. 293) It is at the junction of this orchestration that prejudices such as those in question here are outwardly expressed while concomitantly experienced internally as dialogism- 208 part of a process of authoring the self. Sam achieves "outsideness" in understanding and seeing himself from the perspectives of the non-disabled majority. However, it is within the border area that dialogism opens up and where the voices of the other challenge those that have become part of the individual's inner voice. In this way, Sam is able to temper his inner voices with his own intentions. Metaphorically, Sam's prejudices had been swept under the carpet and in many ways lay dormant until occasionally experienced and expressed in ordinary or not-so-ordinary routines and occupations, such as this day after lunch. In her book Justice and the Politics of Difference, Marion Iris Young (1990) critically challenges the view that there has been any real shift toward a more inclusive American ideology regarding acceptance of diverse groups of people. More specifically, Young (1990) questions the notion that contemporary thinking has shifted from an overtly discriminating view against those who are different to a view that is more accepting. She writes: A discursive commitment to equality for all has emerged. Racism, sexism, homophobia, ageism, and ableism, I argue, have not disappeared with that commitment, but have gone underground, dwelling in everyday habits and cultural meanings of which people are for the most part unaware. (Young, 1990, p. 124) Indeed, Sam himself acknowledges his own prejudice when he stumbles over his words as he tries to justify why he doesn't want to mingle with other people who have disabilities. Sam thus recognizes himself in the man across the parking lot — not as someone unable, not as a comrade, but as someone who is similarly identified 209 within the collective social category of "a disabled person." Within this collective, disability is collapsed and reduced into a singular category of people who are portrayed as self-pitying, incapable, and asexual (Longmore, 2003). The voices of the "other" that exist in opposition to Sam's self-image are rooted in the social discourses. I have made a claim that the media is a realm in which the language of the "other" is developed and perpetuated as a socially dominant discourse on disability. Moreover, similar discourse permeates today's social policies and everyday practices; thus, the self-authoring discussed here remains subtle and in many circumstances invisible on the surface. The Voice Of "Living Low" I have primarily focused on a socially dominant voice of disability, which resonates strongly within Sam; however, this is one of multiple "inner voices" that Sam orchestrates in his day-to-day context. In exemplifying this voice of the "other" resounding within Sam, J have drawn from the media and from examples in the disability studies literature. In order to more fully appreciate the concept of self- authorship and to allow for an exploration of dialogism, I now turn to another voice, one that Sam refers to as "living low." For Sam, this is an inner voice that stands in opposition to or at least challenges the dominant social voices. In this way, we can appreciate the notion that inner voices are not singular; rather, there are plural inner voices that are highly individual despite typically having a base in broader, more collective discourses. Within the context of disability, resistance against a dominant social discourse comes in various forms. To illustrate this, I draw on an occasion 210 when I visited Sam for our regular interview and he told me he burned himself while cooking a tray of enchiladas. 1 asked him if he was okay, to which he replied: Living low, it's all a part of living low, you know. It's like limbo.. .when you're living high, you do the same shit. You trip off the curb, you stumble, you trip over your shoelace, you know, you fall, you skin your elbows, you burn yourself on the stove, it's all the same, just a little different. It's all the same, but different. In the context of living low, the term "low" (or alternatively ''high") merely refers to the position of one's center of gravity. In other words, by using a wheelchair one is lower to the ground than if one is standing. "Living" signifies the idea of being active rather than dependent, even if "confined" to a static "low" seated position. Moreover, living low connoted a sense that whether one uses a wheelchair or not, accidents happen. As Sam was telling me this, he showed me a magazine boasting the title "Living Low" in orange, apparently a publication distributed by a local company. He had picked up a copy at a convention. Although the phrase "living low" was not his own, his use of the phrase also captured for me a sense of being cool or in vogue. As I paged through the magazine I found pictures of, interviews with, and stories about individuals with spinal cord injury. The images were what the media might refer to as sexy, intense, exciting, captivating, and at times provocative. The interviews focused on successful individuals like athletes, entrepreneurs, a dentist, and dancers. The stories were about being hip, taking risks, and living life to its fullest. Sam's response brilliantly captured how living low for him was about being in a wheelchair and doing the same things that he would if he 211 were not in a wheelchair - he was living life. Sam proceeded by telling me about living low: Sam: I remember when I first got hurt, I pulled up, I mean, this is the kinda stuff you go through when you're learning how to live again, right? At the hospital, I wanted some popcorn, right? So I was independent enough, I got the popcorn out of the machine, and I was so hungry, starving, and opened it up, slid it in the micro wave... when it was done I just kinda like pulled it off and slid it down onto my lap from up here, slid it down onto my lap, and all of a sudden my legs were moving, and I started going back to the elevator, and my leg started jumping, and I'm like, what the hell is going on? So I'm trying to reposition my feet, and my legs are jumping, and what the hell, you know? Whatever, so I get back to my bed, get somebody to open up the popcorn, eat my popcorn and everything, and uh, I couldn't get into bed yet at that time, so they came and helped me get back in bed, they pulled my pants down, and you should've seen the two bums I had on my legs, from the hot grease underneath! Interviewer. 'Cause you couldn't feel- Saw: Feel it, you know.. .1 knew my legs were jumping. I, you know, my body was telling me something; I just wasn't listening. You know, I wanted to eat that damned popcorn. Oh, shit! Yeah, I mean it's, uh, living low. Living low! In essence, living low is about pushing the limits - about piercing through the dominant social discourse about what it means to be "disabled." In hearing Sam use the phrase in various contexts, living low is also about a certain nonchalance regarding events that we might expect deserve more urgency, such as attending to a burn. Moreover, living low conveys a sense that mishaps will somehow routinely 212 occur, regardless of whether one has a disability or not. In a subsequent interview, I ask Sam to clarify the concept of living low and the magazine that he had showed me: Interviewer. So, I just have some questions about that Living Low magazine. The men and women in there, what do they think of being in there or about the way they're being portrayed? Sam: They don't care one way or the other, they, yeah, a lot of them feed off it, that's who they are, that's their personality, you know. Uh, but most of those people in there are magnets. People just like being around them. It doesn't matter if they're in a chair; they are just interesting, they have a lot to offer, you know. A few months late' ,vhen attending a disability equipment expo with Sam, I came across the Living Low Magazine again. I picked up a copy for myself. Having more time to read the magazine, I came to appreciate fully that this was in fact a d'scourse circulating within the disability community - one that Sam had internalized and integrated into his own speech to make it his own by "populating it with intention" (Bakhtin, 1981, p. 293). I quote from the inside cover of the magaz'ne: We realize that over time our ideas and punctuated behavior is becoming the norm. You see, by someone taking the responsibility to push the edge and move the bar it creates nev, parameters better serving all involved. The key to better service to the customer is to continually push the edge and move the bar....We have dedicated ourselves to improve the lifestyle of the disabled community. Whether it be the portrayal of disabled, development of new sports or better mobility products we are pushing the edge....Some will watch and judge while others will explore and follow. The final result is called progress, technology, and at times controversy. (Box, 2002, p. 3) 213 By introducing the voice of "living low," I have in effect also revealed another layer of Sam as a person. Living low is a symbol for being cool within certain disability circles, but it also serves as a discourse existing in dynamic opposition to the more static and socially dominant discourses about disability previously asserted. What I mean by "static" here is not that the socially dominant discourse about disability is a permanent fixture, but that it is rooted in a long history of rejecting differences such as those found with disability; furthermore the associated prejudices are socially pervasive and perpetuated. Creating change within such a realm takes time and occurs over many generations. On the other hand, a discourse such as living low has a shorter history and is more fluid as it is internalized and becomes an inner voice. Living low is in many ways a presentation of a subculture that is emerging as a popular and contemporary voice of disability, an alternative to that of the self-pity, dependence, and inability permeating the socially dominant discourses. For Sam, living low is a catch-phrase by which he can identify himself as a person living life to its fullest. It captures his sense of nonchalance about the possibility or actuality of rather serious mishaps and, as we shall see later, about being socially desirable as a partner in romance. To exemplify how "living low" identities are enacted and expressed through occupation, I refer to a story of how Sam "outdid all the para's." On this particular occasion, Sam was visiting his primary care physician for a regular outpatient appointment. The hospital where Sam visited his doctor was also where he had received treat*.ient after his spinal cord injury. A therapist was outside in an open area teaching a group of clients with paraplegia how to ride a recumbent 214 hand cycle 24 . Sam thought the sport looked interesting and wanted to try, but he was told that this was not something appropriate for "quads." After much negotiating, Sam convinced the therapist to let him try. Sam described ho .v he couldn't quite get his balance on his first try: Ace bandaged my hands to the damned thing, right.. .and the training wheels were up, right, but, I mean, they were up only about this much [indicating 3- 5 inches], they weren't popped up all the way, right. I go, I go, let me uh, let me uh, I go all right, let me go...and I went, "wooooa." [swaying side to side in chair] As soon as he let me go I went to lean to the right [leaning to right], I was headed right for the damned curb, right. I was like, "whoa," I was like, all of a sudden I whipped up and turned that wheel the other way [gesturing with his hands as if righting a bike], and it threw me this way. Now I'm ccming for this curb, and I'm like, "whoa," but I was like, "whoa, boom" [swaying side to side in chair]...there was no way he could let me go. But the training wheels screwed me up, right, so I told him, pop those damned training wheels, those things are getting in the damn way, damn it. Against the therapist's better judgment, Sam convinced him to grant another try but without the training wheels. Sam was adamant about being given the opportunity to ~ 4 This is a 2-wheel bike propelied with hands, which uses outriggers and has a seat with a backrest. In a search for two-wheel hand bikes on the Internet in August 2004.1 found very little information. It seems as though most hand cyclists have a preference for upper body-driven trikes (three wheels). The bike that Sam rode was a two-wheel recumbent hand cycle with outriggers (what he refers to as "training wheels"). The bike frame is comparable to a standard bike, except it is low to the ground and has a seat with a backrest rather than the more typical bike seat. One manufacturer writes this about their two-wheel recumbent hand bike: "It will tip over onto the outriggers. In the extended or down position the outriggers will let you tip just a little bit from side to side. With the outriggers in the retracted or up position, the HandBike will tip over about 30 degrees. You won't fall out of the seat but will, at first, find this uncomfortable. Experienced riders can actually snap the bike back up on two wheels from this position. The key is that you won't fall out of the HandBike when stopped or moving slowly with the outriggers in either the extended or retracted position. Steering is accomplished by leaning into the turn and not by twisting the steering column. With just two wheels the rider can lean very steeply into the turn." flutp: • www.mobilitvena.com. August 2004) 215 try again. The more he was told that he wouldn't be able to succeed in this event, the more the socially dominant voice of disability was jeering at and taunting the dialogic self within Sam to expose more of the "living low" voice. Giving up in the pursuit of this moment would mean surrender to the dominant discourse on disability. Sam continued telling the story: He started laughing, he said, "Man you're going to fall." I said, "Man I don't give a shit. Pop those things up man." I went, "Whoa, whoa, whoa, whoa, whomp," [swaying from side to side] right up and centered, going up the middle of the street. Went around the hospital like twice, nobody could believe it. Here's the old quad, you know, no feeling from here down, no movement, no balance, oh yeah, I was the only one of those guys who could do it out of all those para's and shit. So, I mean I like a challenge, I especially like a physical challenge, or something like that. Sam is without a doubt competitive, adventurous, and physical in his pursuit of occupation, but what is of significance here is the stance from which Sam authors his identities in the world around him. As Sam enters into the space of authoring, he stays informed by the socially rooted inner voices, but always factors in his own experiences. The continual orchestration of voices that occurs within Sam is the conceptual core of self-authorship and formation of identities. Conquering the socially dominant voice, disproving it, and pushing it aside is often at the heart of Sam's actions. It is often in an ephemeral moment discovered while engaging in occupation that the expression of this internal dialogue can be tapped and understood. 216 The Voice of "Semper Fi" If there were only two voices entering into dialogue within the space of authoring, understanding identity would be less complex. This is not the case; rather, there is chorus of multiple voices that often exist in an alternating state of harmony and cacophony. Picking out every voice in this choir may not be possible, but identifying the major forces is what I hope to do in Sam's case. To this end, I want to introduce another discourse echoing within Sam - a vociferous voice that has been part of Sam for much longer than that of "living low." As in a choir, however, many of Sam's inner voices often harmonize in unity to accentuate a point or to give emphasis to something especially important. The first time that I interviewed Sam in his office, I noticed a bold red banner with yellow lettering reading "Semper Fi" hanging on the wall by his desk. "Semper Fi" derives from "semper fidelis," Latin for "always faithful," which is the United States Marine Corps motto. In Sam's apartment, I had seen a number of objects embossed with the U.S. Marine seal. I learned that Sam joined the United States Marine Corps just before he was scheduled to graduate from high school. As a marine, Sam was able to travel to different parts of Asia. Sam says that adjusting to the regimen of the military was a difficult change at first, but something that he not only learned to do, but also learned to love. Sam's identity as a former U.S. Marine was strong. Sam said that what he learned as a marine remained with him. In particular, he said that being a Marine taught him to be on time and to show respect. At work, Sam expec ted that the staff that reported to him be on time, have their tasks 217 completed in not only a timely manner but completed correctly. Sam shared with me that he had a low tolerance for what he deemed as signs of weakness - for instance, employees who offered disgruntled looks and expressed complaints about work. For Sam, it was not about "I can't," but rather, "I can and I will." It was a matter of persistence and sufficient effort, as he explained: It's persistence, you know, or just because you can't do it the first time or maybe the tenth, or the twentieth, or thirtieth, you keep trying, you know, I think that, uh, it's just a matter of time, a matter of what it is, you know, uh, when it comes to, I guess, physical ability and mental ability, you know, not like winning the lottery or nothing. I mean, you can just buy that over and over and over for the rest of your life.. .write that off, you know. But I think physically or mentally, if you, persistence, if you just keep trying and trying and don't give up, you know, which is a big thing, not giving up, you know. Sam's emphai ; s on effort and persistence is explicit. Sam does not look favorably on "giving up," and sees this as a weakness. Sam frequently makes reference to the things he learned from being a Marine, and even after leaving active duty, Sam displays his pride via branding objects, symbols, and rhetoric. A moment's glance at the United States Marine Corp (USMC) website reveals Marine rhetoric, something reified within Sam as words by which to live - words that permeate his language and his actions in various contexts. The USMC home page declares: Semper Fi is a constant reminder of devotion to Corps and Country. Two simple words held more closely by Marines than any outsider can understand.. .[one click of the mouse cues to another screen] ONLY THE STRONG: We are warriors, one and all. Born to defend, built to conquer. The steel we wear is the steel 218 within ourselves, forged by the hot fire of discipline and training. We are fierce in a way no others can be. We are Marines. (Marines, 2004) Sam has internalized the voices of the U.S. Marine Corp, and that rhetoric continues to be part of his identity and part of his inner orchestrated voices. He displays with pride a variety of paraphernalia identifying him with the U.S. Marine Corps. When asked about his work ethic, Sam speaks from the voice of semper fi, naming persistence and effort as key ingredients. The strength within him to prevail over difficult challenges is what it means to be a Marine, for Sam an inherent quality he wants to express and display. In the U.S. Marine discourse, the title of what it means to be a Marine is "ONLY THE STRONG," and is followed by a warrior's maxim. I have illustrated how voices unfold within the context of Sam's daily life, and I now turn to an event from Sam's travels abroad to further this illustration. Traveling is not only an occupation and adventure for Sam, but also a bridge to a life of romance. Traveling is a way for Sam to see the woman to whom he is engaged. Sam and his fiance met over the Internet and had maintained contact by phone and e- mail for over one year when I met Sam. During our time together for this study, Sam traveled abroad to visit his fiance twice. His fiance was from a region of the world that was politically unstable at ti^ time. At the time, many Americans were not traveling at all for fear of flying in general and for fear of how they would be perceived abroad. Moreover, there was widespread fear among Americans about how they might be perceived in parts of the world where attacks on Americans had 219 already been noted 25 . I asked Sam about his trip. He told me that, just after he landed and met his fiance, they were on their way to the hotel when they heard about a terrorist attack in the city. Sam said: We heard there had just been a bomb, you know, yada, yada, yada. It's just like, damn. All right, it's going to be an exciting trip, you know. Of course, my mom's calling me a couple hours later.. ."you all right? You all right? We heard there was a bomb in the city." This example of Sam's travels abroad is a somewhat dramatic and unusual example. Sam's response did not reflect any sense that this might have been a bad time to travel or that his safety was in question. Instead, he said, "It's going to be an exciting trip." Whether Sam ever experienced fear, or even a sense of sorrow, at the moment when he learned of the terrorist attack happening only blocks away is something we will not truly know. However, what is clear is that Sam chose to express and show an aspect of his identities that is clearly informed by his inner voice of Semper Fi. It is the warrior in him that is most prominently expressed here. Concomitantly, any trace of a voice representing a socially dominant perspective of disability is drowned. Clashing: "Nobody Ever Dreams Of Being With Somebody In A Wheelchair" During the course of this study, I began to understand how Sam orchestrated the inner voices of living low, Semper Fi, and socially dominant voices about disability. One particular aspect of Sam's life effectively unravels the concept of dialogism and exposes the voices echoed within him, a socially dominant voice of 25 In reference to the news coverage in daily media following the events of September 11, 2001 220 disability and a blend of inner voices resisting the objectification of disability. During an interview, Sam told me about a conversation that he had had with his fiance over the phone: 1 said, "All's I can say is this, that, uh, nobody ever dreams of being with somebody in a wheelchair, or with somebody that's disabled, or whatever," you know. I said, uh, "I don't expect them to understand, they don't know me," you know. I said, "And they'll never know me the way you know me." I said. "Your family knows me almost the way you know me, you know, and that's why they like me, you know." Sam's words surprised me - "Nobody ever dreams of being with somebody in a wheelchair, or with somebody that's disabled." Sam's "long-distance" relationship with his fiance had been infused into our conversation from the first interview when Sam shared with me that he was about to go visit her, to interviews months later when 1 heard about his trip, or about a phone call he had had hours earlier, or about plans for the future, until the end of this research project when I had the pleasure of meeting Sam's fiance in person. I had seen pictures of Sam traveling with his fiance. 1 had never sensed doubt on Sam's part rooted in his disability. Nevertheless, the tension within Sam is explicit. In saying that "nobody ever dreams of being with somebody in a wheelchair," Sam again opens up a window into the dialogic self. He exposes a perspective that is not completely his own, but yet exists within him as a voice rebelling against and in many ways instigating his own inner voice. Bakhtin (1981) writes: The word in language is half someone else's. It becomes "one's own" only when the speaker populates 221 it with his own intention, his own accent, when he appropriates the word, adapting it to his own semantic and expressive intention. Prior to this moment of appropriation, the word does not exist in a neutral and impersonal language (it is not after all out of a dictionary that the speaker gets his words!), but rather it exists in other people's mouths, in other people's contexts, serving other people's intentions: it is from there that one must take the word, and make it one's own. (p. 293-294) By engaging in dialogue with his fiance, Sam begins to orchestrate the voices within him and "populate them with his own intentions and accents," thereby making them his own. While Sam is orchestrating these voices, these perspectives, he is simultaneously engaged in a dialogue with his fiance that continues to contribute to this process. Sam continued to state that his fiance shared with him her own surprise at having fallen in love with him: All I can, all I can tell you is this, she goes, "I have truly learned one thing since I've been with you." I said, "What's that?" She said, "Love is blind. Love is definitely blind. I would have never have thought that I could love somebody that's in a wheelchair as much as I love you, you know." You know, and especially like when she has to clean me up, I shit my pants, like, last time I was there, I had a real bad problem, I don't know what was going on, but.. .three times a day, sometimes, I'd have to get cleaned up, man. Sam was aware that his spinal cord injury was not always convenient. He pointed out how it was especially difficult to imagine that anyone would want to be with him romantically when certain disability-related complications occurred, such as having 222 an unexpected bowel movement 26 . Still, Sam refuted the socially dominant image of disability and especially being cast as part of an asexual image. I return to Paul Longmore's look at disability in the media only in brevity for the purpose of reiterating the previously discussed socially dominant perspective: With few exceptions, television programs and movies depict disabled people shunning romantic possibilities because of low self-esteem. From the amputee veteran in the film classic The Best Years of Our Lives to a quadriplegic accountant in this season's [1985] Highway to Heaven, handicapped characters typically cannot believe that anyone could love them with their disabilities. (Longmore, 2003, p. 124) Within the context of what a dominant discourse about romance conveys, Sam is cast as an ineligible participant because of his spinal cord injury. The social voice, so to speak, casts him as a person with a disability, as an asexual person. Both Sam and his fiance feel themselves being tugged at by other people telling them that this is an improper love. However, Sam strongly rejects this socially dominant voice that is constantly challenging him. Sam does believe that someone can love him as someone living low. It is through an orchestration of voices that Sam constructs his identities as a desirable man in a romantic relationship and comes to see himself as a partner. 26 Sam found himself in the most precarious circumstances of any of the participants in this study when it came to his bowel care. Sam said that he generally tried to perform his bowel care program every other day. Although this is consistent with general recommendations for individuals with spinal cord injury (reference - sheet #10 SCI network), this schedule seemed to leave Sam with frequent accidents. In fact, during my interviews with Sam, I witnessed Sam experiencing sweating with a piloerectile response to be relieved by having a bowel movement, 3 times. I would wait while Sam attended to what he referred to as a "plumbing issue." In addition to the times that I witnessed, Sam also disclosed several other incidents with me that occurred during our research study. Sam had a bowel accident on the airplane while on the way to visit his fiance as well as in a hotel in which he was a guest. 223 This orchestration of discourses as reflected in occupations has been observed previously. Bagatell (2002) describes a young man with autism, Ben. Ben was someone who grew up feeling "different" (p. 76) for most of his life. As a young boy, Ben was teased because he looked different, acted different, and perhaps because he outperformed his classmates academically. During his secondary school years, Ben was described as mostly engaging in solitary play, albeit not bothered by this sense of isolation. Ben was content with being "different," in spite of the many authority figures that were encouraging him to fit in and "act normal" (p. 80). As he got older, however, this changed. Bagatell (2002) writes, "As he got older, Ben became aware of the authoritative voices around him, those of teachers, doctors, and his parents, that told him that in order to have a meaningful life, he would have to 'act normal'" (p. 80). Around the same time that Ben began to understand the implications of these voices, he began to feel a desire to experience romantic relationships, and he began to search for different avenues through which to experience being "normal" (p. 79), something that ended up not being entirely possible. I introduce this story because Bagatell (2003) draws from Holland et al. (1998) as well as Bakhtin (1981) to elucidate the dialogism defining Ben's orchestration of voices and self-authoring process: During the time I got to know Ben he began to experience tension between the discourses of the communities in which he lived and constructed his identities-his new found Aspie world and the neurotypical world. For Ben, the neurotypical world where he lived with his family, went to college, and received therapy services was an inescapable space of 224 identity making. He continued to hear the authoritative voices reminding him on a daily basis of the importance of fitting in and of his marginalized position. He also heard voices of the Aspie community that reminded him that he could live a meaningful life as a person with autism, (p. 91) The Bakhtinian dialogism to which Holland et al. (1998) frequently refers is deeply situated within social contexts and within "figured worlds." In Ben's case above, when frustrated by his parents and teachers' wishes for him to be "normal," he reminds himself with discourses from the Aspie community that it was okay to be himself. In Ben's case, he finds comfort in carrying out occupations in worlds where this "Aspie" voice can be embraced. Sam, on the other hand, does not generally seek disability-friendly environments, but he vehemently challenges discourses of disability wherever he finds himself. It is through occupation that Sam most potently expresses and conveys his identities as able and valid in various worlds ranging from romance to the courtyards outside a hospital. For Sam, actions speak louder than words, and this is exemplified in his stories. "Honey. Watch Out For That Curb" A few days into his most recent trip, Sam and his fiance went to a nearby mall to pick up a few things and to peruse the storefronts. For Sam and his fiance, this was more than running an errand; it was in many ways a time for them to be together as a romantically involved couple. As a partner in a romantic relationship and as someone living life, Sarn was very much living low. When Sam and his fiance arrived at the mall they found there was no elevator. The dilemma that 225 presented itself was that Sam's fiance wanted to find something that was on the third floor, but she did not think that Sam could safely ride the escalator. She asked Sam to wait for her while she went to find what she needed. Sam wanted to accompany her, but she refused to let him ride the escalator. Sam tried to convince his fiance that she only needed to stand behind him as a precaution. She continued to refuse Sam's attempts, and Sam reluctantly ended up waiting on the first level. Ironically, in this moment, Sam was quite literally "low" but no longer living low. The socially dominant voice of disability was asserted over Sam's inner voice. Sam experienced a breach to his usual orchestration of voices. Before Sam's fiance returned however, her brother showed up at the mall. Sam described what happened next: Well, then her brother showed up at the mall, right. And I'm like, "Hey," uh. He said, "Where's Sonia?" I said, "She's up there on the third floor. Let's go up there." He goes, "How?" I go, "Up the escalator... come on...follow me." And so I pushed on to the escalator, and he pushed right on, and nobody, not one person got on in back of us, until I was all the way up to the top, right? Riding an escalator may not always be considered an occupation. But in this case, riding the escalator with his future brother-in-law became an occupation for Sam; moreover it was an occupation tied to a broader and more socially meaningful occupation of shopping at the mall with his fiance. In this case, riding the escalator allowed San, to demonstrate that he doesn't give up (voice of Semper Fi) and that he quite literally in this scenario lived on the edge (voice of living low). Sam commented that "not one person got on in back of us," implying that his riding the 226 escalator was perceived by others as risky and daring. Most importantly for Sam, however, was that riding the escalator allowed him to express outwardly his inner voices through an occupation. In this way, he conveyed to his fiance that he was a romantic partner who was able, not a disabled man who was a burden at the mall and needed to be left behind to wait at ground level. This negotiation of identities amidst the relationship with his fiance is an ongoing challenge that Sam continues to fight. Sam described how during the same trip, he in part had to make an extra effort to push the boundaries in order for his fiance to see him as "able:" We're getting to my first curb, and, like, she never saw me do a wheelie or anything, right, and the curbs over there are pretty high, right. She's like, "Hon! Honey, watch out for that curb," and I did a wheelie, and boom, boom, boom, scared the shit out of her. Pissed her off. "Don't you ever do that again!" Of course, you know, I did it the next time, and that's all I needed to do was break my chair while I was over there; I thought about that later, [sarcastic] That weald have b p en great. So, anyway, so, she's, you know, learning I can do, I'm not really different, like she pictured, you know, me being in a wheelchair, you know. You know, she thought she was going to be pushing me and stuff like that...but everything, everything went really good, you know. Ultimately, Sam developed a sense of confidence in his ability to face challenges and to try things that others tell him not to do. The tugging at perspectives that occurred within him was spread across every palpable aspect of Sam's life. However, it was especially important for Sam to make certain that the woman who he was entering into a long-term commitment with could also appreciate him as a man living low. The fact that Sam continually pushed these boundaries was evident even in the above 227 quote, as Sam said, "of course, you know, I did it the next time." When his fiance doubted his ability to do something, for Sam it was not so much of a challenge as it was an indication that his fiance was still not seeing him in a way consistent with his own perspective. Moreover, he heard the socially dominant voice of disability in his fiance, something that provoked the inner voices of resistance to emerge ever more forcefully. Orchestration Of Occupations Throughout this chapter, Sam's story has been about rejecting an image of disability and instead negotiating identities through the orchestration of discourses that I have referred to as voices of "disability," "living low," and "Semper Fi." These voices develop amidst the relationships between people and within socially constructed contexts or figured worlds where people carry out their lives. In Sam's story, I have drawn on such worlds as media, Marine Corps, friendships, and romantic relationships. Furthermore, at the outset of this chapter I made a claim that it is through occupation that a window into the orchestration of voices and thus identities is opened; and that it is through occupation that people not only express their identities but also actively negotiate identities within figured worlds. On the day when Sam went to the hospital for his doctor's appointment, for example, he had no intention of riding a recumbent bike when he was preparing to leave his home. This is an event, and an occupation, that emerged out of circumstances entirely unforeseen. To recap from earlier, in this scenario Sam was told by the therapist "this is not an activity for quad's." Responding to this perceived 228 assault and slight to his social position required an improvisational orchestration of occupations. Sam felt challenged not only to negotiate a voice of living low against a socially dominant voice of disability, but also to orchestrate into this negotiation, the actual "doing" of riding a recumbent bike. The complexity of this negotiation - the dialogism of internally persuasive discourses and orchestration of occupations - is what lies at the crux of the ongoing construction of identities in social worlds. What is interesting about Sam's story is that his narrative is not only "about occupations," but it is expressed through occupations. Sam's construction and expression of identities is largely tied to his orchestration of socially informed discourses that have become internally persuasive. What Sam illustrates so beautifully is that identities are not only about an orchestration of social discourses in the form of internal voices, but it is about the orchestration of occupations in the form of action. These occupations are imbued with symbolism, and intimately situated as part of a broader social context. For instance, riding an escalator ordinarily might not even qualify as an occupation. However, in Sam's case, riding the escalator must be seen more broadly. The escalator serves as a major obstacle in Sam's world of romance. For Sam, the collective mall experience is about being able to spend time with his fiance and about exploring a new environment. Contextually this is not just about the humdrum of running errands or a vacation, but a time to develop a relationship with someone with whom he might spend the remainder of his life. In this way, Sam's time at the mall is at least partly figured along a storyline of romance. Ascending the escalator becomes purposeful, 229 culturally significant, personally as well as symbolically meaningful, and highly relevant as Sam negotiates identities of competence and ability. The escalator is an obstacle because it displaces Sam in an instant from being a romantic partner to being a disabled person. In a matter of seconds, Sam goes from being in what he considers a desirable and privileged position in the world of romance to being in an undesirable and unprivileged position within the world of disability. Sam protests and tries to free himself from being placed there, but finally gives in and sits on the ground level waiting for his fiance to return. In the next pivotal moment, however, he sees an opportunity in the arrival of his fiance's brother and, without being explicit, convinces the brother to help catapult him back into a more dignified place. The environment in which Sam finds himself does not change as he sits at the bottom of the escalator, but the voices within him are in fierce debate. For many, this internal debate might ensue until the fiance returns. Instead of succumbing to the dominance of a voice of disability, Sam orchestrates his actions to ascend the escalator, metaphorically ascending back into a world where dignity is restored. Sam is driven to demonstrate that he can do the things that others don't think he can do - to negotiate and express the voices within him and to orchestrate them through occupation. Moreover, it is possible to see the brother within the broader picture as a potential brother-in-law. Thus, Sam is challenged to not lose face as a future brother-in-law, abandoned at the bottom of the escalator as "the disabled guy." Sam 230 shows his future brother-in-law that he is capable of being a good partner and a contributing family member. He simultaneously strengthens a bond with the brother as he orchestrates this occupation and re-enters into the world as an able man and as a partner who can participate in the shopping experience. Moreover, the metaphorical implications of Sam riding ahead of his future brother-in-law as they ascend the escalator beautifully exemplifies to the world Sam's full membership in a world of romance, a more dignified position, both figuratively and literally. Embracing these challenges not only shows others that Sam is "able," but it confirms for him that he is "still able." It goes to show that he can be a full participant in all aspects of life, able-bodied or not. It is through the act of orchestrating occupations that Sam acts as an agent in his environment. Chapter Summary Sam's story is in many ways about the tension that persists in constructing identities in various social contexts. It is via Sam's occupations that we gain access into an ongoing dialogue of perspectives situated in broader social discourses. For instance, one such discourse is the way in which people with disabilities are portrayed in the media and thus in the minds of the socially dominant non-disabled population. Another such discourse is the way that groups of people with disabilities have come to see themselves as living on the edge - living life to the fullest. There are many other socially informed discourses or voices, such as voices developed through being a Marine, being a partner in romance, or being an employee at a 231 company. In organizing and orchestrating these voices, people come to understand themselves as relevant characters within the various figured worlds in which these discourses are perpetuated. This orchestration is not always smooth and easy, but rather is full of twists and turns, and always involves tension resulting from the conflict of different perspectives. As Sam's story reveals, it is through occupation that he enriches the ideas put forth throughout this chapter. He gives meaning to living with a disability through occupation. In many ways, these occupations are enfolded as much within his daily life as they are within more momentous events such as traveling to see his fiance. Sam shifts between and within figured worlds; he also merges worlds of romance and disability. Sam illustrates the ongoing dialogism that occurs within him as he encounters breaches to his sense of identities imposed by socially dominant discourses. Moreover, it is in the moments when Sam is in the midst of occupation that the windows into the dialogic self are opened. For Sam, while wheeling in the community, while shopping at the mall with his fiance, while visiting with friends, or while playing sports, Sam's dialogic self is exposed as his social position is subjected to shifts from outside discourses. Occupation is a mechanism by which people claim and reclaim their identities when challenged by the multiple social voices represented in dialogism. It is through the "doing" of occupations that Sam is able to migrate back into the territories of control, the worlds in which he is afforded a more desirable position, and in which he is more familiar with the boundaries set 232 by his comrades. It is through the orchestration of occupations that Sam is able to enter into and exit from social worlds. He eloquently uses occupation as a vehicle to set into motion his own discourse. In this way, he identifies himself through occupation. Sam manages to draw other people into dialogue with him by engaging them in his occupations. The moments of these shared experiences represent the real orchestration of voices, the figuring of identities, and the seismic shifts in social position within the worlds where Sam resides. 233 CHAPTER 7 Dylan's Story Up to this point, I have illustrated how participants in this study develop, negotiate, and express identities through occupations that represent abilities and competence. Wesley, Rosalyn, and Sam vehemently reject identities of disability, in the sense of being cast into a discourse of dependence and incapacity, or in the sense of combating slights to social positions within the worlds they inhabit. Dylan, too, finds images of disability inimical to his own sense of identities. Dylan frequently reflects upon his life. His story illustrates how he mines his everyday occupations, both novel and ordinary, for opportunities to uncover and express identities exuding possibilities. Occupations not only connect the present to Dylan's past, but also serve as a way to imagine the future. The temporality of this experience is not simply a matter of connecting an arbitrary memory from the past, but rather an example of how the reflections embedded within the present moments inform imagined possibilities and future occupations. In previous chapters, I have described aspects of identity construction using the concept of figured worlds, primarily focusing on the socially constructed realms formed by occupations, characters, objects, ideologies, and storylines. I highlighted self-authorship, social power, and position - in the context of disability — as critical to the construction and expression of identities through occupatic ns. Although I 234 draw upon different aspects of identity construction in each chapter, I intend for the process to be seen as intertwined and complex. To this point, I have concentrated on the present, sometimes dipping into specific events from a participant's past in order to situate current circumstances within a certain thread of prior experiences. Although I have mostly focused on the immediacy of figured worlds, as in the here-and-now. Dylan's story more potently brings out the importance of past, present, and future dimensions of the here-and- now worlds. The possibilities in Dylan's story are not theoretical in the sense of being remote probabilities or goals, but rather a more viscerally experienced potential, a potential that is lived through the actual doing of occupations. Dylan has a proclivity for sharing his experiences of and perspective on life in the form of rich narratives. His story is complex, and provides an ideal case for bringing together and reiterating points that I have explored in previous chapters. Thus, I will spend a substantial part of this chapter reiterating aspects of self- authoring and positionality, but from a different perspective and with new examples situated in a different context. I will add a new dimension to the notion of self- authoring, drawing from Holland et al.'s (1998) interpretations of Vygotsky. Moreover, drawing from Agamben (1999), I will explore concepts of potential both within people and in occupation, as well as more specifically explore how a concept of potentiality emerges through Dylan's engagement in occupation. 235 The Power Of Positive Thinking Long before his accident, Dylan had been hurled into a state of depression after his father died. Dylan was only a teenager when his father took his own life. As Dylan reflected upon the years spent with his father, he recalled vivid memories of fishing trips during the summers, and early weekend mornings riding off-road motorbikes through the sand dunes of the Southwest. Dylan cherished these times, saying that these were moments critical to his development as a young man. Through these recreational occupations, Dylan and his father bonded, developing a relationship of trust, respect, and love. At the time, Dylan described himself as athletic, artistic, popular among peers at school, and as having high self-esteem. However, during the months and years following his father's death, Dylan described himself as increasingly depressed, beginning to experiment with illegal substances, withdrawn from school activities, and ultimately being arrested for a crime that haunted him for many years. Dylan had been trapped in the dark and distant corners of his mind for several years, withdrawn and isolated from a happier life he knew to exist, when he happened upon a book titled The Power of Positive Thinking. Whether it was the actual message conveyed within this book, merely an incident of opportune timing, or something entirely unrelated, Dylan described reading this book as instrumental in ending his depression. The words by Norman Vincent Peale in The Power of Positive Thinking inspired a transformational change; he remembers feeling the need to reframe his outlook on life and to adopt a perspective that incorporated 236 occupations defined by possibilities rather than limitation. It became apparent that reading this book was a pivotal event in Dylan's reframing of past events, as in narrative meaning-making (Bruner, 1986, 1990, 2002; Mattingly, 1998; Polkinghorne, 1988), and also served as a paradigm by which to pull himself up, as through the use of mediating devices (Holland and Valsiner, 1988). As Dylan re-emerged into the world after years of feeling consumed by depression, he embraced his passion for creativity and business. Dylan began to work full-time for his mother's company. Dylan gained more responsibility within the company and eventually assumed responsibility for the management of several corporate accounts. He asked his mother to consider expanding her business and allowing him to handle aspects of marketing. Dylan's mother was hesitant and did not have the same vision for company growth, thus reacting unfavorably to most of Dylan's ideas. Not long thereafter, Dylan began to feel his creative ideas and his entrepreneurial urges being overly restrained by an increasing tension between him and his mother. After numerous unresolved discussions with his mother, Dylan left for a more metropolitan area to work at a large company where he expected to find greater opportunities for career development. After less than two y^ars, Dylan decided to take the knowledge he had acquired and start his own business. He rekindled his passion for visual arts and integrated this interest with his management skills. Dylan was in his 20s and felt that he was at the peak of his career. He had learned about management through various employment venues and later acquired a 237 broad set of skills through apprenticing under entrepreneurs who had been instrumental in showing Dylan the knack for his newfound business career. The Two Turning Points His business was reaching a new height of success when Dylan was involved in an accident that led to his spinal cord injury. On the day of his accident, Dylan had been working with his girlfriend and brother on a number of projects. According to Dylan, they had completed about 10 accounts in the field. Dylan and his girlfriend returned to Dylan's apartment after dropping his brother off at a friend's house. The following day, Dylan and his girlfriend were supposed to visit with family. Dylan remembers feeling exhausted from working and driving all day. Despite Dylan's pleas to get a good night's rest at his place before running any more errands, his girlfriend insisted that they pick up her clothes and other belongings in preparation for the following day's events. To appease a tired Dylan, his girlfriend offered to drive. Dylan reluctantly agreed. He does not remember the exact details of the accident because, soon after they left, he fell asleep. While driving along the highway, Dylan's girlfriend fell asleep as well, rolling their truck at about 70 miles per hour. The roof of the truck caved in and Dylan said that he took most of the force to his head and neck. They said I was awake in and out during the time. It took the jaws of life to take me out, but I don't remember any of it. The only thing that I can remember is that, maybe a day or two after, one of the doctors waking me up and telling me that I had a spinal injury and I guess I was all drugged up with painkillers and stuff and I really didn't know what that meant. I 238 just thought, 'cause I had had some hospital time before when I broke my leg, and football accidents in high school, and also riding motorcycles...so I was just, like, I will eventually get better. It was not something permanent to me at that time. And then I spent about a month there and it started to hit me that, I guess.. .umm, everyone else is kind of serious.. .hey, this is kind of permanent.. .you're gonna have to deal with it. Dylan framed his spinal injury in the context of previous experiences. He said, '"cause I had some hospital time before.. .so I was just, like, I will eventually get better," not fully realizing the extent of his injuries during the initial weeks following his accident. It was not until after about one month that Dylan began to see the permanence of his paralysis through the eyes of people around him, and began to cope with a new and altered corporeal experience. When I heard Dylan recount the events of these first months in the hospital, I thought that Dylan's lack of knowledge concerning spinal cord injury might actually have helped him cope with the acute and relatively traumatic circumstances. However, according to Dylan, his ability to cope with the trauma stemmed from a promise he had made to himself earlier, never to be depressed again and to look at the bright side. In this moment, Dylan affirmed the turning points of his life. Bruner (2002) has fittingly written, "The bald fact of the matter is that one rarely encounters autobiographies, whether written or spontaneously told in interview, that are without turning points" (p. 83). Dylan had experienced two sudden and admitted traumatic events in his life: First, the death of his father, and then the unexpected accident that led to his spinal cord injury. For Dylan, these sudden and bewildering disruptions 239 were interpreted as turning points, filtered through a lens he called "'the power of positive thinking.'' Those are kind of >\> •" jrning points in my life that really affected me >. !ot, n really have that bad experience and then U iccide that I have to change. I can't feel this way because it's not productive for me. And I also looked back after, like, my injury...and I seemed to take it a lot better than the other people that were injured. I seemed to not want to go to that depressed level, and there is always the therapist or a lot of people who were in the rehab place who were trying to inquire if I feel depressed, and ask, "How do you feel about what's happened to you?," and things like that, and I just felt like, at that time, at age 18 and 19, when I read that book [The Power of Positive Thinking], and telling myself that I just wasn't going to feel bad again no matter what happened, and I just kind of held on to that paradigm and that thinking. That kind of carried me through my rehab and carried me through my injury all throughout these years. The death of his father had hurled Dylan into an emotional abyss. lie had struggled to make sense of the events surrounding hiis father's death by trying a variety of strategies, such as attempting to forget about his father by filling an emotional void with mischief, withdrawing to contemplate in solitude, and receiving counseling at school. For many years, Dylan had not been able to make sense of these events and what they meant for him. However, by reading a book, talking to others, setting goals, and contemplating the past, Dylan reinterpreted the meaning of events in his life. He said, "I can't feel this way.. .it's not productive for me." Dylan acted as an agent to begin reconstructing identities around competence and possibility. The events of the past had not changed, but Dylan's interpretation of these events and 240 what it could mean in his life had changed. In this way, by recalling and telling stories of past events, Dylan found ways to dynamically redefine what these events meant in his life (Bruner, 2002). i f-Authoring And Mediating Devices In examining what The Power of Positive Thinking means for Dylan as he deals with a new injury and with renegotiating his sense of identities, it is helpful to return to the idea of self-authoring. In Chapter 5, Sam's narrative elucidates ideas about self-authorship through occupations that are inherently representing notions of ability and competence. For Sam, discourses of "disability," "Semper Fi," and "living low" are dialogically engaged as inner voices to be orchestrated. Despite numerous and persistent challenges t •> his ability for engagement in occupations, Sam rejects "disability," instead orchestrating occupations around discourses of "Semper Fi" and "living low," negotiating and expressing identities of aptitude and competency. Similarly for Dylan, "positive thinking" penetrates an inner cacaphony of discourses and becomes "internally persuasive" (Holland et al., 1998). Holland et al. (1998) draw upon two scholars, Bakhtin and Vygotsky, as a foundation for their perspective on self-authoring. In this way, Holland et al.'s (1998) concept of self-authoring is a sort of fusion between Bakhtin's ideas of dialogism and Vygotsky's ideas pertaining to the developmental process of creating a sense of self. According to Holland et al. (1998), Bakhtin's perspective on self- authoring is imbued with an emphasis on social power and tensions as well as an "insistence on dialogism, addressivity, and answerability" (p. 177). In other words, a 241 person is constantly being "addressed" by social discourses and simultaneously entering into dialogue with these discourses by "answering" with what is internally orchestrated and has become internally persuasive. On the other hand, Vygotsky has been interpreted to be more concerned with the development of internally persuacive discourses in self-authoring and the function of such discourses in ordinary, everyday occupations (Holland et al., 1998). Central to Vygotsky's tenets is human development and ideas about how people are uniquely able to seize and conquer social obstacles through the use of linguistic symbols, something he refers to as semiotic or mediating devices 27 (Holland et al., 1998; Vygotsky, 1978). According to Holland et al. (1998), both Vygotsky and Bakhtin hold, '"Inner speech' to be the key intra-mental node, where social speech penetrates the body and becomes the premiere building block of thought and feeling" (pp. 174-175). In other words, self- authoring, as I use the term here, is a sort of hybrid between the theoretical stances of both Bakhtin and Vygotsky. However, as Holland et al. (1998) note, Bakhtin and Vygotsky diverge on what is central to the process of negotiating identities through discourses. Vygotsky (1986) did discuss monologic versus dialogic forms of (inner) speech, but he simply did not give inner speech the dialogic quality that Bakhtin did. Inner speech was, for Vygotsky, only possible because of social speech, and thus dialogical in its developmental origins. But Vygotsky gave more emphasis to the semantic, representational potential of mature linguistic practice and its potential for semiotic 2 " Originally, examples of such mediating devices included tying a knot in a handkerchief as a cue to remember a given task, or displaying a picture of an obese person on the refrigerator door as a reminder of a personal diet protocol (Holland et al.. 1998; Vygotsky, 1978). 242 mediation, and thus gave less attention to what Bakhtin continued to emphasize, the pragmatic aspects of language - how it was used, how it communicated power and authority, how it was inscribed with status and influence. (Holland et al., 1998, p. 178) In Dylan's case, the discourse of "positive thinking" is clearly dialogical in its developmental origin, and yet not as clearly representative of the kind of power, addressivity, and answerability that Bakhtin's work brought to the concept of self- authoring for Sam. Where Bakhtin focuses on the social struggles that accompany the orchestration of discourses, as social and inner speech, Vygotsky focuses more on the developmental processes and effect of symbols or mediating devices on consciousness (Holland et al., 1998). Through the retelling of events that led him to incorporate "positive thinking" Dylan explicates a perspective on agency. The discourse of "positive thinking," serves as a sort of "modicum of control over one's own behavior" (Holland et al., 1998, p. 175). Thus shifting from the dialogic qualities informed by Bakhtin's work, Dylan's story brings forth more about the developmental processes of self-authoring. Holland et al. (1998) write, "Just as humans can modify the environment physically - thanks to their production of and facility with tools and symbols - they can also modify the environment's stimulus value for their own mental states" (p. 35). In the widely cited example of Alcoholics Anonymous (AA), Holland et al. (1998), refer to "storylines" and "tokens" used within that group to explicate a kind of mediating device within the figured worlds of AA. It represents a particular kind of objectified ideology functioning as a behavioral template. According to Holland 243 et al. (1998), entering into the AA figured world means redefining one's identities to include that of "alcoholic" and exercising a transformation of identities "from drinking non-alcoholic to non-drinking alcoholic 28 " (p. 65). In accomplishing this transformation, a member begins to tell and be told in "a particular sort of personal story" (p. 65). Characters use these stories to share aspects of their own life, their experiences with drinking alcohol, and their desire to enter into an AA realm. Moreover, as milestones of sobriety are met, tokens - in the form of poker chips - are granted as symbols of achievement. These stories contribute to cultural production and reproduction in three ways. First, they objectify many cultural elements - the beliefs, propositions, and interpretations - that new or potential AA members learn through listening. Second, by virtue of their narrative forms, the stories realize a model of what alcoholism is and what it means to be an alcoholic.. .Third, the AA story is a tool of subjectivity, a mediating device for self- understanding... he learns to understand his own life as an AA life, and himself as an AA alcoholic. The personal story is a cultural vehicle for identity formation. (Holland et al., 1998, p. 71) The AA storyline serves as a way to keep the participating member from drinking, and becomes a sort of mediating device 29 . This serves to alter the AA member's The drinking non-alcohoiic is someone who "fails to meet social obligations...their behavior becomes problematic by normal standards" (Holland et al., 1998, p. 67). Moreover, the drinking non alcoholic has a "tendency toward inappropriate, out-of-control behavior...after drinking alcohol" (ibid). The non-drinking alcoholic is someone who identifies as once having been a "drinking non alcoholic," and has also incorporated "sobriety" into their life, meaning, "a new way of life, with spiritual aspects of surrender to God or a Higher Power, humility, trust, honesty, and making amends for wrongs committed in the past or present" (Holland et al., 1998, p. 70). 29 "These means (or activities, as Vygotsky with his emphasis on process might prefer) are psychological devices for mediating between one's mental states and processes and one's environment" (Holland and Valsiner, 1988, p. 248). 244 behavior (Holland & Valsiner, 1988), just as "positive thinking" alters Dylan's frame of mind. Holland et al. (1998) write. "Mediating devices are part of collectively formed systems of meaning, products of social history. Although individuals constantly construct and reconstruct their own mediating devices, most of their constructions are not original" (p. 36). In this way, the devices are rooted in cultural and environmental circumstances. Moreover, mediating devices are described as symbols that function within the cerebral world, like physically palpable objects and tools function in the physical or corporeal world (Holland et al., 1998; Holland & Valsiner, 1988). For instance, a flight attendant might suppress his or her frustrations at an inappropriate passenger by imagining that the passenger had recently experienced a traumatic event (Holland & Valsiner, 1988). The mediating device for the flight attendant is the symbol of the imagined trauma as a mechanism for forgiving the passenger's inappropriate behaviors. By relying on such mental tools, the flight attendant is able to ignore the inappropriateness and consequently avoid feeling angry or enacting this anger. By assigning new meaning and personal relevancy to "positive thinking," Dylan is in effect internalizing a discourse by which to be guided. For Dylan, "positive thinking" is a representation of "the potential of words as tools, as 'bootstraps' by which one could pull oneself up to another form of behavior" (Holland et al., 1998, p. 177). When he sustains his spinal cord injury, Dylan enters into a realm of rehabilitation, surrounded by other people who have also encountered changes in their ability to function due to injury or illness. Dylan remembers, "I 245 seemed to take it a lot better than the other people that were injured," signifying that he was able to draw upon the past events in his life, but also to a greater degree access a mediating device of "positive thinking," allowing him to "take it a lot better." Referring to The Power of Positive Thinking, Dylan says, "I just kind of held on to that paradigm and that thinking," and attributes to this an instrumental part of his rehabilitation. What the book comes to mean for Dylan is not just something that he causally reads, but rather something that moves from a social (outer) discourse to an inner discourse, moreover serving as a "bootstrap" by which to pull himself up. Dylan is able to influence his mental state and his actions, reframing and redirecting the construction of identities, much of which remains in the future. In presenting the two turning points in Dylan's life leading up to his spinal cord injury, my intent has been two-fold. I have begun to introduce who Dylan is as a person. Dylan is someone who is active, social, and enjoys athletics; he is someone who takes pride in his work and considers himself an artist and entrepreneur. He is also someone who experienced the dark depths of depression but somehow, despite little support from his family, emerge as a man filled with feelings of potential. By the mediating device of "positive thinking," Dylan leaves behind a state of hopelessness, asserting that because of "positive thinking," he feels more optimistic and is better able to cope with his spinal cord injury. Dylan is constantly engaged in reflecting and reinterpreting events in his life; his social history is complex, with many twists and turns. The Power of Positive Thinking influences Dylan's interpretation of events along a temporal continuum of past, present, and 246 future. This is not merely a static representation of previous events, but rather a dynamic process of constructing a sense of identities and informing present and future action in an open-ended manner. In the next section I will continue to explore aspects of self-authorship, adding a layer of complexity by integrating notions of power and privilege. Facing Disability - Adding Complexity To The Construction Of Identities In this section, I begin to frame Dylan's initial encounters with disability, drawing upon two stories that Dylan shared during our interviews. These stories, as told by Dylan, represent the complexity involved in negotiating a sense of identities through occupations after a spinal cord injury. It was during discussions about adjusting to a new life that Dylan recounted how facing disability itself was not as challenging as facing the images of disability. Drawing from past experiences, Dylan did not want to incorporate apathetic and disabling images into his occupations and ongoing self-authoring of identities. As Dylan continued to reconstruct his sense of identities around competence and possibility, he increasingly rejected occupations and images connoting inability and dependence. The Sex Video Dyian began to tell me about a rehabilitation session that remained vivid in his mind, even after nearly 20 years. Dylan and his peers on the spinal cord injury unit were invited to view an educational video on disability and sexual expression, followed by a discussion. Under normal circumstances, talking about sex and watching a "sex video" might sound like a welcome series of events for the young 247 adult male in the United States. Initially, this was true for Dylan and his peers. However, several minutes into the session, the excitement and intrigue had faded and the appeal was gone. Within the context of spinal cord injury rehabilitation, talking about sex meant discussing fertility, performance limitations, and adaptive strategies. A "sex video" meant watching individuals with a variety of physical disabilities having sex on tape for the purposes of education. In short, this turned out to be a direct assault to Dylan and his peers' self-perceptions as competent and desirable men. Moreover, this turned out to be the antithesis of exciting, and instead a rather traumatic experience: That is the first experience of having to deal with being disabled...And by seeing the movie...we're still not looking at ourselves, there are no mirrors in a rehab place, so we're not visualizing who we are. We're just still adapting to the wheelchair for the movement. And, um, it's just getting the communications you have with the people there, so that was sort of the initial shock, seeing people with disabilities, and just never before seeing that, you might have seen something in the movies of people having sex or pornos.. .but it is a completely different image that you've never seen before, and, like I said, it's kind of a shock. Like I said, we all, it was like a group consensus that that was really weird. I didn't feel comfortable seeing that, and I didn't feel comfortable thinking about myself that way. And, actually, it did damage to us mentally to say that, "Wow, you are not attractive anymore if you're with somebody anymore." So that was kind of difficult to deal with. Dylan recalls this story as "the first experience of having to deal with being disabled," explicating the significance of this event in hurling him into a realm of disability. Dylan goes on to say, "we're not visualizing who we are." Dylan clearly 248 conveys how seeing the video comes as a shock, not because of the sexually explicit material, but because of the images of disability. At the time, Dylan is only beginning to reconstruct a sense of identities that include the permanence of a complete spinal cord injury. An object such as his wheelchair is still more short- term like a crutch than a long-term alternative mode of ambulation. Dylan sees the inconveniences of adaptive equipment around him as temporary rather than permanent fixtures in his life. In this context, the wheelchair is simply an expedient way to make mobility more efficient and, like crutches, can be discarded once he recovers. In short, after weeks of effectively not visualizing himself as "disabled," during this critical event Dylan finds himself in a sudden head-on confrontation with a notion of disability for which he is not ready. The film clip portrays images of awkwardness and inability, resulting in feelings among the viewers made explicit in such utterances as, "you are not attractive anymore." Dylan later reveals how, some of the participants in the video, received assistance with bed transfers or with certain aspects of what might arguably be considered essential to the intimate experiences of sexual occupations. Hence, the essence of an ostensibly amorous and private experience is made mechanical and robbed of a more desirable quality. It is difficult for Dylan to derive personal meaning from the viewing of the tape because he considers the people depicted unattractive. Dylan is not intending his statements to be negatively judgmental regarding other people's aesthetic qualities; rather, he cannot see himself as one of the participants depicted, nor can he imagine himself as a sexual partner. The 249 possibilities for Dylan as a potentially desirable partner in romance are shattered during these moments of watching people on the screen - supposedly like himself - engaging in something embodying what he considers unat.ractiveness, dependence, and to some degree incompetence. Painting Cups Dylan's confrontation with images of disability and perceived slights to his position as a competent man was not an isolated event. Before his injury, Dylan had considered himself an artist, and this self-perception never changed after his injury. Although Dylan did dedicate time to painting, his artistic creativity was not confined to such endeavors. He experimented with different media and themes in a variety of contexts and settings. From his own interpretations, the work that Dylan had done for his mother, the apprenticeships he had pursued thereafter, and his own business were all outlets for and expressions of artistic creativity. It was because of this past history with art that I focus on a particular story that Dylan shared with me on more than one occasion. I don't know, it's hard to explain it.. .the actual thing that they were doing was okay to help build our dexterity or whatever, but what we were actually doing kind of, it almost feels like you're regressing as a human a certain amount of years that you almost felt like, well, you're having us paint cups, and that's fine and dandy to help our dexterity, to help us do something with our arms and hands, but what kind of perception does that give us of ourselves that we're now resigned to painting cups, you know? How do we fit into the world, you know? Could I have imagined myself driving a van from a wheelchair?.. .It doesn't really do anything for your esteem if you're an adult, 250 you know. It works with kids, but, see, it really bothered me because I'm an artist and they were trying to get me to do that and I'm like, "I'm not doing this." Dylan was referring to a treatment session during his rehabilitation and the occupation at hand involved painting cups. Upon telling the therapist that he would not participate in the session, Dylan qualified his statement by saying that he would be amenable to participation if he was given "real" paint brushes and a canvas instead of the plastic cups. The complexity of the meaning embedded in this occupation for Dylan was not immediately apparent; however, there were numerous issues at play that directly related to the process of his negotiation of identities. Inherent in this passage were a plethora of connotations connecting Dylan to a sense of past, present, and future identities, all embedded within this occupation. The meaning of painting cups and the objects used represented in a symbolic way something quite demeaning for Dylan. It connected Dylan to his past, not as fond memories of being a "kid," but as insulting slights to his identities as an "artist." On a continuum of more or less sophistication relating to artistic expression, Dylan considered himself to be a professional and skilled artist. Conversely, painting cups was something for children and something that represented unskilled and unprofessional art. Dylan said, "We're now resigned to painting cups." Furthermore, Dylan asserted that "it almost feels like you're regressing as a human," confirming a sort of temporal rewind while simultaneously conveying a sense of dissatisfaction. What this occupation connoted for Dylan was a sort of temporal regression and deterioration of maturity on one hand, and a stifling of prospective 251 potential on the other. For Dylan, painting cups was especially disturbing because he was an artist. Cup painting was not necessarily beneath him, but rather something lacking value, connoting a degree of elementariness, assaulting his personal integrity, and, above all, lacking sufficient ties to future identities. This sense of stifled potential was revealed in comments such as, "how do we fit into the world?" Shifting And Refiguring Worlds In both the case of the sex video and the cup painting session, Dylan is thrust into a world of disability. The sex video makes explicit images of people with disabilities as dependent and "unattractive." Although the video does not asexualize individuals with disability as is described in Chapter 5, according to Dylan, the result is similar because it situates him as unattractive and undesirable as a romantic partner. A discourse of disability penetrates his consciousness as a social voice to be orchestrated against other inner discourses of ability and competence (Holland et al., 1998). Similarly, cup painting is an occupation that connotes a discourse of disability dictating a context of child's play, concomitantly also "pivoting" (Holland et al., 1998) Dylan from a possible world of art to a world of disability. As Dylan experiences the tension between discourses within him and the transition between figured worlds, he describes a similar orchestration of voices as Sam did in Chapter 6, and a similar shifting of power as Rosalyn did in Chapter 5. The potency of Dylan's stories lies in how vividly these socially situated identities are illustrated in and experienced through occupations. By socially situated, I am referring to the figured worlds in which occupations are enacted. In 252 the case of the video session, there are multiple figured worlds simultaneously being negotiated. For instance, there is conceivably a world created around a group of patients living and experiencing rehabilitation together, and also a more distant and imagined world of romantic and/or sexual endeavors. Certainly part of the therapeutic agenda is to foster a sense of hope along a continuum of possibilities for desirable future identities. For Dylan, however, instead of opening a world of possibilities, the educational sex videotape opens a world of disability. Dylan finds himself in a room, trapped by the images on the television screen, and, to his detriment, stunned into a kind of socio-emotional paralysis far more debilitating than the physical paralysis. It is in the very depths of the visceral experience, felt in the moments of actually watching the video clip, when Dylan is overcome by a sense of conflict stemming from perceptions of disability challenging his self-image. Thus, in terms of negotiating identities, Dylan is pivoted from a world of sexual exploration into a realm of disability; simultaneously, his social position as a competent and desirable man is slighted. This is the first encounter in which Dylan recalls facing disability, and he remembers that it was damaging. Yet he comes to draw upon this experience as a way to resist being cast and positioned as a dependent person within a disability realm. These objectifications become the organizing basis of resentment and often of more active resistance. When individuals learn about figured worlds and come, in some sense, to identify themselves in those worlds, their participation may include reactions to the 253 treatment they have received as occupants of the positions figured by those worlds. Yet the "metapragmatic" capability to figure social practice- through narrative, drawing, singing, and other means of articulation — is at the same time a capability to figure it otherwise than it is. (Holland et al., 1998, p. 143) In other words, within the contexts of figured worlds, both figured and positional identities are intricately intertwined. A part of these identities is scripted along the socially constructed ideologies of a given figured world, often seeming reified and static. What Holland et al. (1998) propose is that identities are in fact not so scripted and static, but rather exist within a realm where there is room for a greater degree of agency and change. By knowing and understanding, perhaps even internalizing, objectifying discourses circulating in the social environment, a person can begin to resist such objectifications. By resisting in this way, a person begins to shape his or her own identities along ideologies and storylines that deviate from those of the immediate figured worlds. In fact, some weeks after the "sex video" incident, Dylan encountered another slight to his position as a competent person. Dylan entered into the cup painting session with a certain self-perception of being a skilled artist. He understood that the function of painting cups was intended to contribute to developing dexterity and fine motor skills, but it was the occupational form and meaning that he opposed. For Dylan, artistic occupations have been a matter of significance and meaning, yet the materials provided and the context connoted evoked a sense of futility. This time, however, Dylan resisted the slights to his 254 position and instead said, "It really bothered me because I'm an artist...and I'm like, 'I'm not doing this."' Th-* materials and theme of the cups evoke a figured world of disability, but by resisting, Dylan refigured this realm into a place of art by obtaining a canvas, oil paints, and a more personally relevant theme. I have reiterated many ideas and continued to add conceptually to ideas explored throughout the previous stories. Dylan's narrative adds a new context, a different perspective, and contributes to the richness of the varied nuances present in the negotiation of identities through occupations. Continuing to cornect Dylan's occupations to myriad meanings rooted in his past or his projections of identities in the future, I will further examine the notion of possible identities brought forth in occupation. Going To The Beach - Exploring Potentiality Upon discharge from rehabilitation, Dylan engaged in a mea; "'gful series of occupations culminating in going to the beach. These occupations were imbued with potential, and yet also drew upon Dylan's past experiences. Through experiences of going to the beach, Dylan began to wonder whether he would be able to drive or travel. Dylan used to frequent the beach prior to his accident. Over the course of our interviews, he took me to visit two different beaches, one that turned out to be where he had journeyed on his first outing post-rehabilitation. The beach was a place for Dylan to, among many things, think, read, paint, eat, play, bring a date, and meet friends. After his accident, Dylan felt a strong desire to revisit the beach where he had spent so much time during previous years. Going to the beach consisted of a set 255 of occupations connecting pre- and post-injury identities. Dylan described how he did not find much support from his family or friends and how he spent his first outing alone after returning home from rehabilitation: And I got there, and I was just so proud of myself that I gotten on the bus on my own and gotten down there, and it was a real nice summer day, and, like I said, it is a real beautiful area and it's got parks. It's like Venice or Balboa...it's <jor a real nice pier. And when I got down there, though, it was probably about 11 o'clock going on 12ish and 1 realized, "Wow, I didn't think about lunch and I didnt think about eating first, so now what am I going to do?" So this is the first time that 1 ever decided that I could eat out on my own. So I was like, "So how am I going to do this? How am I going to get my money out? Can I handle this? or what am I going to eat? What can I order so I don't make a mess? I don't have my fork with me." I was just so institutionalized to a certain extent at the rehab place.. .And so 1 went to the end of the pier and.. .1 looked at the menu, and there were a lot of things that looked good, hamburgers and fries and things like that, but then I started thinking, "Is the hamburger going to be too big? Am 1 going to be able to handle that? Am 1 going to make a mess? " So 1 thought, "Well, how about if 1 just go for a grilled cheese sandwich cause that seems pretty flat, easy, and no. much could fall out of it." So I went for the grilled cheese sandwich and I think I handed the wallet over to the gal and said, "Can you take the money out for me".. .and you know that was the first time 1 realized, "Hey, you are just going to have to trust people, and just give 'em the wallet and let them take the money out and do things like that." After I finished the sandwich, I was like, "Wow, that was pretty cool. 1 got down to the beach, had my lunch on my own, didn't need much help, so, you know, wow, so I guess I can get out there and do things on my own." So it just gave me a lot of confidence to be able to do that. And then the rest of the day was just about enjoying the beach that I grew up and experienced and cruised around. 256 Dylan began this anecdote by saying, "I got there and I was just so proud of myself," and toward the end said, "So it just gave me a lot of confidence." Dylan was proud of the competence he had demonstrated to himself, and he was proud of the possibilities that he had unveiled through the process of occupation. Dylan was filled with confidence because he had asserted his agency in transforming the imagined into reality. He had acted on and in his world through everyday occupations, and he had tapped the reservoirs of potentiality embedded within these occupations and in him. Just as cup painting had represented regression and stifled possibilities, going to the beach had conversely come to represent progression, hope, and potentiality. The Grilled Cheese Sandwich Why did eating a grilled cheese sandwich at the beach give Dylan so much confidence? When Dylan arrived at the beach, he realized that he had not planned for lunch. After all, Dylan said that he was still in some ways "institutionalized." Moreover, despite the institutional mentality, Dylan still did see himself as a competent person, even though he had not yet dealt with the need to plan for lunch. However, eating lunch for Dylan was apparently not just about deciding what to eat, ordering, and consuming. Instead, lunch began with such thoughts as, "How am 1 going to do this?," "How am I going to get my money?," "What can I order so 1 don't make a mess?," "Can 1 handle this?," ?nd other fleeting doubts. After much self-deliberation and reasoning, Dylan decided to order the grilled cheese sandwich. This was something that struck him as "pretty flat, easy, and not much could fall out 257 of it," and, as for money, "you are just going to have to trust people." In many ways, the grilled cheese sandwich could have pivoted Dylan from a realm of ability and competence into a world of disability. However, this was not the case. Although the sandwich might have been selected due to self-doubt, it turned into an object associated with potentiality, competency, and embedded within the occupation of eating. The dining occupation represented by the simple consumption of a "flat" grilled cheese sandwich, actually turned out to be complex. Most central to the eating of this sandwich was the affirmative answer to a self-doubting question in Dylan's mind: "Can I handle this?" People encounter many obstacles in the course of constructing themselves as occupational beings, and people shape their identities through their daily practices, habits, and activities (Clark et al., 1996; Jackson, 1998a). In successfully overcoming multiple hurdles from internal self-doubt to external physical barriers, Dylan came to interpret the grilled cheese sandwich experience as "the first time that I ever decided that I could eat out on my own... so I guess I can get out there and do things on my own." Through the deceptively simple engagement in this occupation, Dylan was able momentarily to feel the potentiality within himself, and concomitantly to see future possibilities. If he could eat a grilled cheese sandwich, perhaps he could eat a hamburger next time. And with continued success, perhaps he could entertain the idea of dining with friends or with a date. Clark (1993) writes that, "Most individuals with disability probably do not develop to their full capacity because the development of human potential is, like 258 identity, also contingent on circumstances" (p. 1073). In her Eleanor Clarke Slagle lecture, Clark (1993) describes a successful woman, Penny, whose life is disrupted by a stroke. Through their journey - both research-informed and therapeutic in nature - Clark, among many things, metaphorically sees herself as the "coach of an elite athlete" (p. 1073), helping Penny imagine what is possible through contextually relevant occupations. Some time after her stroke, Penny is said to have, Choked on a piece of broccoli during a feeding session, an indicator that therapy should have beg.-n with applesauce...one year later Penny was eating whatever she wanted, was back to teaching, and was using a motorized scooter. A year after that, she could use a walker and was independent in all activities of daily living (Clark, 1993, p. 1073). In the therapeutic sense, part of the challenge was to discover and explore a sufficient breadth of occupations in order to transform the symbolic connotations of eating applesauce into, for example, those of teaching. In the research sense, the challenge was to excavate occupations for a potency linked to the reconstruction of identities after a disability. By the time I met Dylan, he was no longer contemplating the grilled cheese sandwich. Dylan and I shared many lunches, dinners, and happy hour snacks. Dylan would usually ask me to place a tray in his lap in order to make it easier for him to reach his meal. If Dylan ordered a hamburger, he wuuld ask me to cut it in half; when we ordered food that required dipping, I would prepare the food and put it on his plate. What was important to Dylan was the shared experience of a mealtime. He placed less emphasis on such logistics as whether something might fall out of the 259 sandwich or whether he would be able to cut the meat by himself, and more emphasis on the internally experienced and orchestrated identities of competence and ability a£ someone participating and sharing in an occupation. In fact, during the course of this study, Dylan increasingly spent more time dating, usually within the context of a shared meal. In such statements as, "Or maybe she would go out with me.... I still have that hundred-dollar gift certificate from, umm, the Jazz Kitchen," Dylan made explicit the naturalness of musing about the incorporation of dining as part of a much larger event than just nourishment. Moreover, Dylan punctuated the fact that he was no longer filled with the self-doubts represented by the grilled cheese sandwich many years earlier. The Bus As A Symbol Of Pride Why was Dylan so proud of riding the bus? Dylan was accustomed to driving a car, having the freedom to roam about his community when and how he desired. As a consequence of not having an accessible vehicle, the bus became a tool for re-entering the community, but riding the bus was also an occupation imbued with larger possibilities. Riding the bus was a big deal. Based on logistics alone, Southern California is a place where the car is a token of necessity in nearly every household and where people customarily drive their cars from their homes to a grocery store located only a few blocks down the road. For the purpose of a more vivid illustration, I will exaggerate a bit and draw from Dylan's own thoughts to declare that cars in California are not only a mode of transportation but are more like extensions of self. In this sense, Dylan had been concerned about being trapped and 260 isolated by limited mobility. Successfully riding the bus opened up possibilities that had been lost to him until he actually engaged his curiosity and enacted the occupation of riding a bus. At the time, possibilit ies were about gaining access to the community and remaining involved, but bus riding was more complex and imbued with even deeper and broader implications. Consider for a moment what riding the bus came to involve for Dylan contextually, and consequently how this related to his sense of self-identities. Using the bus would never be as convenient as driving his own car, but more than a matter of inconvenience, riding the bus became an occupation where Dylan's position as a competent man in society was repeatedly slighted. As Dylan continued to use the bus for commuting to work, school, or to see friends, he increasingly encountered challenges: The lift that would have to come up 4 feet and out often broke. So it was just a fiasco and such stress that the drivers would have to go through when this would happen, because it would throw them off schedule, and they would take out their stress on me, and it just became such a battle to assert myself and say, "Look, I have the right to ride the bus the same as everyone else, and you can't take out your stress on me." It just became a true stress to just get back and forth. When it worked well, it was great. But then, also, the weather conditions would make it difficult. Dylan's words affected me, resonating with similarties from other stories, especially his assertions that "they would take out their stress on me...it just became such a battle.. .1 have the right to ride the bus." Just as Rosalyn's position as a competent mother was slighted at the bank, Dylan's position as a competent man commuting to 261 work or to the beach was slighted. Furthermore, just as Sam was cast into a world and a discourse of disability at the bottom of the escalator, Dylan, too, is frequently cast into a discourse of inability and dependence while riding the bus. Like Rosalyn and Sam, Dylan negotiates his self-sense of identities amidst discourses of disability and slights to his social position. In the process of negotiation and through engaging in these occupations, Dylan imagined what would be possible when he obtained his own vehicle. In this context, Dylan was proud of managing to get onto the bus and successfully accomplishing his travel mission on that first day going to the beach, and he continued to be proud for persevering in the face of challenge and imagining a more affable future. Riding the bus heightened the intensity with which Dylan imagined possibilities of driving his own car. In fact Dylan finally obtained his own vehicle, observing: That's what's so great about my van, is that it allows me to be involved.. .That's what the van does for me, it gives me that freedom to just go and do whatever I want, I don't have to care whether it's too hot in the van, or if I have the heat on too much, no one's gonna complain, and I can go and drive around wherever I want to drive or I can drive as long as I want to drive and I don't have to worry about coming home. Whether Dylan rides the bus or his car, the task of travel from point A to point B is met. However, the possibilities made available by the car give new meaning to traveling for Dylan. When he enters his vehicle, he is no longer subject to slights by random people, nor is he generally cast into discourses around disability when driving his own car. Thus, riding the bus to the beach on that "nice summer day" is 262 an occupation that Dylan is proud of accomplishing. Taking that initial step, engaging in an occupation broadly within the genre of travel, allows Dylan to begin seeing possibilities. It is the springboard for greater things to come. A Rite Of Passage Although over time we can see the grading of occupations from eating a grilled cheese sandwich to sharing a meal at the Jazz Kitchen, and from riding a bus to driving a van, there is a notion of potentiality within Dylan that is constantly brewing and awaiting actualization. To borrow from Bruner (2002), the occupations involved in going to the beach are somewhat like a rite of passage from a negotiation of "disability" to a negotiation of "ability" for Dylan: A !Kung Bushman boy is put through a painful ceremonial (which includes having ashes rubbed into fresh cuts in his cheeks, tomorrow's proud scars of manhood) designed to mark his passage out of childhood. Now he is fit to be a hunter, ready to reject a child's ways.. .The rite of passage not only encourages but legitimizes change. It is not only in rites de passage (or Erikson's life stages) that turning points are conventionalized. Self-narrating, if I may state it again, is from the outside in as well as from the inside out. (Bruner, 2002, pp. 83-84) Dylan sets out on a mission to the beach, but this adventure turns out to be more than just a way to reconnect to the past. Instead, this becomes more of a journey into the future. Along the way, Dylan experiences barriers, a sort of painful ceremony into "able-hood," albeit not quite as drastic as rubbing ashes into fresh cuts. Symbolically, this is not only a passage out of rehabilitation, but also a passage into a realm of competence and possibility. Dylan inadvertently rejects disability, usually 263 in more subtle ways than Sam and Rosalyn, but nevertheless it is a denial of displacement into a world publicly misinterpreted as dependence and incompetence. In asserting his pride and confidence, Dylan legitimizes his recognition of possibilities within him and embraces the change from institution to com : nity. Toward Conceptualizing Potentiality In Occupation I have used the term potentiality throughout this chapter, connoting a sense of possibility. Recapping from Chapter 2, potentiality derives from the roots "potenza" and "potere," meaning "power" and "can," respectively (Agamben, 1999). Agamben (1999)writes that there are two kinds of potentiality. Generically, potentiality means merely that there is a possibility that some future event or transformation will occur. On a deeper level however, potentiality is not merely that which might exist in the future; it exists in the present although not yet tangible or palpable (Agamben, 1999). The potentiality that I am concerned with here is a matter of contemporary discussions, albeit rooted in writings dating back to Aristotle. This contemporary potentiality in particular is a concept that I believe has n h to offer the future of occupational science. Even though my intention in this dissertation is not to trace the concept of potentiality back to early philosophers, it is vital to situate "potentiality" for the purposes of clarity. With this in mind, it is useful to turn again to Giorgio Agamben: There is a generic potentiality, and this is the one that is meant when we say, for example, that a child has the potential to know, or that he or she can potentially become head of state. This generic sense is not the one that interests Aristotle. The potentiality that interests 264 him is the one that belongs to someone who, for example, has knowledge or an ability. In this sense, we say of the architect that he or she has the potential to build, or the poet that he or she has the potential to write poems. It is clear that this existing potentiality differs from the generic potentiality of the child. The child, Aristotle says, is potential in the sense that he must suffer an alteration (a becoming other) through learning. Whoever already possesses knowledge, by contrast, is not obliged to suffer an alteration; he is instead potential, Aristotle says, thanks to a hexis, a "having," on the basis of which he can also not bring his knowledge into actuality (m* energein) by not making a work, for example. Thus the architect is potential insofar as he has the potential to not-build, the poet the potential to not write poems. (Agamben, 1999, p. 179) A clear distinction is made between a "generic" kind of potential and a more metaphorically pregnant potential, one that is imbued with "hexis." Even though potentiality may not be fully visible, it exists in a stream of current processes and is negotiated through the occupations that we partake in during our everyday lives. As occupational beings, that is, as sentient beings that have an inherent need to engage in occupations, we accrue potential to act on knowledge and information through engaging in occupations. It is in this intangibility that the power - the potenza - of potentiality dwells: Unlike mere possibilities, which can be considered from a purely logical standpoint, potentialities or capacities present themselves above all things that exist but that, at the same time, do not exist as actual things; they are present, yet they do not appear in the form of present things. (Agamben, 1999, p. 14) 265 Potentiality is as much the power to act on knowledge as it is the power to not act. It is clear from these passages that the underlying assumption is that a person has some capacity to act on prior information and skills to bring into reality, or not, that which lies dormant as potentiality (Agamben, 1999). Potentiality denotes an event classified by action or inaction, a certain will to exercise agency, and an active pursuit of a future that has not yet taken form. I believe that the kind of agency afforded by a multi-faceted potentiality and felt through the enactment of occupations, is a critical element in the lives of the participants in this study. It is a matter of not quite knowing how, but somehow knowing that "I can." It is this idea of "can" that interests Agamben, and the concept of "can" exists at the heart of what I want to explore further. Agamben (1999) writes: Following Wittgenstein's suggestion, according to which philosophical problems become clearer if they are formulated as questions concerning the meaning of words, I could state the subject of my work as an attempt to understand the meaning of the verb "can" [potere]. What do I mean when I say: "I can, 1 cannot"?" (Agamben, 1999, p. 177) This is where I believe that Agamben (1999) offers a perspective aligned with what participants in this study reported and also with ideas embraced by occupational science. When Dylan faces disability for the first time, he is struck by the paralyzing effect of the images on the screen. He is unprepared for the displacement of his identities into a realm of disability. The sex video screening, like the cup painting session, offers Dylan no motivation to engage and no risks worth taking (Mattingly, 266 1998; Mattingly and Garro, 2000). On the other hand, it is a story worth telling because Dylan wondered, "Could I have imagined myself driving a van from a wheelchair." When Dylan is presented with cups and paintbrushes, he is thrown into a world of disability where he is stripped of his privilege as an artist, and as a competent person. Dylan expresses an awareness pertaining to the purpose of the occupation at hand, namely, "to help build our dexterity." However, he challenges the relevance of this occupation for the lack of a connection to his potential as an artist or as someone who migh* drive. This is significant because, during the initial period of adjusting to the permanence of his spinal cord injury, Dylan does not know whether he can paint, drive, visit the beach, or go on a date again. These are not unknowns in the sense of unfamiliar and novel experiences, but unknowns in the sense of deeply rooted q. .stions regarding self-potential. In the process of reconstructing his identities as an artist and as a person who drives, among other things, Dylan makes explicit his need tc engage in occupations where he can begin to experience the potential within him. It does not have to be driving, but it has to be sufficiently potent to allow a vision of traveling and being re-engaged within his community. The story underlying cup painting is one described in terms of regression, and thus it points to the past rather than the future. As Aganiben (1999) states, potentiality is a matter of a deep knowing that one "can" even though the details might not yet have been revealed: 267 For everyone a moment comes in which she or he must utter this "I can," which does not refer to any certainty or specific capacity but is, nevertheless, absolutely demanding. Beyond all faculties, this "I can" does not mean anything - yet it marks what is, for each of us, perhaps the hardest and bitterest experience possible: the experience of potentiality, (p. 173) Something transforms Dylan during his initial encounters with disabilit" During the moments surrounding the sex video screening and cup painting, Dylan begins to experience a visceral experience of potentiality brewing within him. Several months later, going to the beach serves as the vehicle into occupations of abilities and competence. On the day when Dylan first arrives at the pier after independently riding the bus for the first time, he does not imagine taking a date to the Jazz Kitchen. Through the occupation of eating a grilled cheese sandwich alone at the beach, Dylan gains a sense of confidence on a superficial level, and on a deeper level begins to express a sense of potentiality in saying, "so I ^uess I can get out there and do things." This is still a sense of potentiality because Dylan is not quite sure ("so I guess") whether he will be able to "get out there and do things," but he has begun to feel a certain potentiality. In this respect, it is not a matter of generic possibility that exists independent of his actions, but rather a kind of potential that exists within him and is intimately tied to the agency that he expresses through his occupations. It is only through this retrospective account of that first day at the pier that Dylan sheds light onto the potentiality embedded within the occupations enacted, occupations that transform Dylan's sense of identities to a state of "potere." Dylan does not know how, but he knows that he can paint, drive, and perhaps go on a date 268 again. It is an experience felt through the negotiation of identities and real-time enactment of occupations. Moreover, it is in this retrospective account, the narrative telling, that the outsider gains privy into Dylan's own interpretations of events and his negotiation of occupations to construct a new sense of identities. A Bas ; Tor More Agency - Shades Of Potentiality In this chapter, I have continued a dialogue with Holland et al.'s (1998) work pertaining to the construction of identities in social worlds. In particular, I have focused on the nature of socially constructed worlds in which Dylan enacts his occupations, and how discourses perpetuated in these worlds are internalized and orchestrated within the person. As Dylan moves between social worlds and orchestrates identities and occupations, he is also fighting against dynamics of social power and privilege. Although Holland et al. (1998) d^, provide room for much agency and for ideas about concepts likened to potentials', the stories that I have shared through this disse ation portray an ev»n more open-ended agency expressed in terms of more specific potentiality. Holland et v'. (1998), do not describe human potential in teons of the openness that I put forth here: In the making of meaning, we "author" the world. But the 'T' is by no means a freewheeling agent, authoring worlds from creative springs within. Rather, the "I" is more like Levi-F f <-auss's (1966) bricoleur, who builds with preexisting materials. In authoring the world, in putting words 10 the world that add, esses her, the "I" draws upon the languages, the dialects, the words of others to which she has been exposed, (p. 170) 269 The idea that humans build on prior knowledge embedded in various discourses is comprehensible. It is difficult to imagine that humans are blank slates existing with an unlimited capacity for creativity born from within. Although a bricoleur-like image resonates well with the narratives shared by participants in this study, the unlimited springs of creativity from within also carry a powerful potential to be consider ed. What 1 explore here has to do with the preexisting materials but also the orchestrating and negotiating of potential through the very enactment of occupations. Exploring ideas pertaining to the potentiality in a person and in occupation inherently requires a greater sense of openness and a power to act on that openness. Dylan illustrates how his identities remain open-ended, allowing for possibilities to arise out of actually engaging in and expressing himself through occupations. Using two examples from Holland et al. (1998)- that of Alcoholics Anonymous and the Tij 30 Festival - 1 contrast the open-ended potentiality that 1 discuss here against a backdrop of a more restrictive sense of potential suggested by Holland et al. (1998). I add Holland et al.'s example of the Tij Festival to add a dimension of complexity to the case of AA that 1 have already draw from in previous chapters. In short, the storyline of AA is too limiting, and within the storyline of the Tij Festival, the potential identities are too displaced into a parallel "as-if realm." The AA storylines are scripted, which disallows a sought-after openness; and the Tij 30 Tij Festival has been described as the "relation of the rituals io Brahmanical cosmology and ideology," (Holland et al., 1998. p. 254), with an emphasis on singing and dancing although contextuaiized as "activities within the religious observances - fasting, performing, puja (worship), and ritual bathing - that, in addition to the feast on the night before Tij, take place over a four-day period" (Holland et al.. 199°, p. 254). 270 festivities allow for agency in the form of a festival but not typically in everyday life. For instance, when Holland et al. (1998) explain the use of their term "figured," they also consider other terms such as "narrativized" or "dramatized," and in doing so suggest a certain scripted storyline. Holland et al. (1998) write, "'Narrativized' and 'dramatized' convey the idea that many of the elements of a world relate to one another in the form of a story or drama, a 'standard plot' against which narratives of unusual events are told" (p. 53). Dylan's story is not one with a standard plot, nor is there a drama against which to tell his story. Dylan's narrative has to do with the open-ended potentiality of identities embedded within here-and-now ordinary occupations. The stories of AA that Holland et al. (199 s * describe, serve in many ways as a type of modeling by which to compare one's own story or life to those of others, in the process reifying the landscape of AA storylines. Dylan, on the other hand, is not involved in this type of listening and telling of his story, nor is he subscribing to an underlying storyline within his figured worlds in this way. The construction of identities for Dylan is not necessarily about searching for a story on which to hang his identities, nor seeking a storyline of reification upon which he can model his own shifting identities. Rather, the storyline, so to speak, along which Dylan is constructing and molding his identities is open-enaed and one that sets into motion a sense of agency as as potentiality. Thus, Dylan has an inherent need for an expression of more potentiality and open-ended agency than is allowed by the kind of storylines or mediating devices underlying Alcoholics Anonymous. 271 The narrativity of identities among the Nepalese women of the Tij Festival brings in a more open-ended kind of storyline, something closer to what I mean by allowing for potentiality. The extensive ethnography conducted in Nepal explicates how a certain resistance to the here-and-now, on-the-ground storylines and ideologies can serve as a venue for imaginary figured worlds of more desirable possibilities. In particular, these stories have to do with resistance against the socio political oppression of women by government, society, and men such as husbands and fathers. The Tij festival described by Holland et al. (1998) serve as the impetus for an imaginary world where women can indulge in the possibilities for a better life (c life of equal opportunities) through the telling, retelling, and hearing of stories in the forms of song and dance. Through the medium of Tij songs and the collective activity of their song groups, the Naudadan women brought to life an atmosphere of possibility. In the "play" of Tij, women's groups composed and performed songs through which alternative worlds were imagined and experienced, through which alternative femininities were given shape. (Holland et al., 1998, p. 254) Through the occupations associated with the Tij Festival, women co-construct a sort of parallel "counter realm" in which they can imagine alternative possibilities in the construction of their identities. It. this imaginary realm, the women are afforded a sense of agency not generally perce: -d in Their everyday, or>-the-ground realities in Nepal. Interestingly, by virtue of coming together for Tij festivities and in enacting the occupations of Tij, the women achieve a corporeal experience of agency and 272 empowerment, albeit brief, and through this process are able to effect their construction of identities in the imaginary worlds as well as the actual culture in which the expressed these identities 31 . This implies a sort of collective agency leading to a change in culture. Dylan's story is about how he constructs a sense of identities around the potentiality that he comes to realize through his engagement in occupations. It is not that the AA storyline cannot create a sense of possibility, for it create; i possibility of sobriety. However, these possibilities have been defined by a notion such as "non-drinking alcoholic" within the AA storyline, and in some abstrac. way become universally sought by its membership. Conversely, Dylan's story shows how his occupations are open-ended and autonomously enacted, producing unexpected possibilities within him. Dylan's construction of identities through his occupations is in many ways embedded in the culture and people around him, like the Nepalese women of Tij. Although the storyline of Tij sheds light on possibility, these are possibilities embedded in a parallel reality of imagination and enacted through performance. The possibilities produced through Tij occupations exist in a much more abstract world than that in which Dylan lives. Although Dylan spends much 31 Holland et al. (1998) write, "Over the period of our research this time-bounded world began to expand. Tij groups became less circumscribed in time, their compositions leus controllable. Their songs became available both in handwritten versions and in published songbooks, outside the time and locale of the festival (earlier, singing Tij songs after the festival had been labeled a sin). T he relations between women in many Tij groups also became more multi-stranded: some of the women began to relate to one another not just as sisters and friends but also as political actors and, in one case, as a literacy teacher promoting equal rights. Women in these groups also expanded the scope of their agency in the worlds of domestic relations and political action" (p. 269). 273 tiir>e imagining possibilities, the potentiality within him is emergent in the moments of enacting occupations in the here-and-now. Chapter Summary In this chapter I have brought forth aspects of self-authoring and social power in a different contexts. Moreover, I have shed light on an element of potentiality existent in and fundamental to the actual engagement in occupation. Specifically, in the first section of this chapter I drew out aspects of self-authoring using "positive thinking" as a mediating device. Then I turned to the figured worlds of disability as Dylan initially faced a new life with spinal cord injury. Dylan's life unfolds amidst multiple obstacles that repeatedly challenge him to negotiate his identities as a man living with a disability in America. This section was characterized by Dylan's struggle to combat the disabling images and discourses from the social worlds around him. I re-illustrated the significance of the dialogism that occurs as part of self-authoring and furthermore illustrated the dynamics of social position inherent in this process. Lastly, drawing on Dylan's trip to the beach, I illustrated the potentiality inherent in occupation. Negotiating a sense of identities embedded in occupations is complex. This process is often further complicated by such factors as disability. Through Dylan's eyes, the most dramatic exemplification of this complexity was illustrated in images providing little or no room for imagination about a desirable future and conveying a dramatic absence of potentialityThe kind of self-authoring that occurs within 274 figured worlds does not always provide an adequate context for exploring the potentiality inherent in occupations relevant to constructing and expressing identities. Potentiality is increasingly realized out of enacted occupations: as Dylan increasingly builds upon these experiences, he continues to take on unanticipated challenges. Potentiality is embedded in and expressed through occupations and is set into motion through an imaginary realm in which occupations are negotiated to form and re-form identities. Dylan captures the significance of both the imaginary and more concrete aspects of social realms in shaping and reinterpreting his identities. 275 CHAPTER 8 Conclusion In the final chapter of this dissertation, I summarize what I consider the most salient findings that came from these analyses. I have explored ways in which four individuals living with spinal cord injury, create, shape, and express identities through both ordinary and more momentous occupations within the context of their daily lives. In the first chapter, I began with a story, making the point that disability conceptually alters the context in which identities enacted through occupations are interpreted. This is important because the looming discourses of disability were peppered throughout myriad social contexts ranging from the workplace and tennis courts to ordinary community settings such as the bank and a friend's home and were infused into the environments in which the participants in this study carried out their lives. It was within these types of environments, peopled by characters that had misguided perceptions of people with disabilities, and within storylines of disabling images where occupations were carried out, inevitably infused with either enabling or constraining ideologies. In subsequent chapters, I illustrated through the unique stories of Wesley, Rosalyn, Sam, and Dylan how socially constructed discourses about disability factored into the process of shaping their identities. In particular, it was in contrast to a context of socially perpetuated misconceptions about disability, that the participants crafted their identities through occupations such as working, playing tennis, driving, meeting friends, mothering, traveling, partnering, riding a 276 recumbent bike, ascending an escalator, or having a grilled cheese sandwich at the beach. Through their stories, I emphasized different aspects of how occupational experiences largely influenced how each participant perceived themselves, were perceived by others, and perceived others to perceive them. The findings in this study suggest that occupations were not enacted within neutral socio-cultural worlds, but enveloped the socially charged complexities of myriad discourses existing within a broader social milieu. The participants in this study orchestrated a plurality of occupations within multiple worlds, and these occupations were imbued with associated privileges accorded therein. I have suggested that it is through the experiences that come from actually engaging in occupations, sometimes the seemingly simplest occupations, in which the powerful possibilities that exist within a person are felt as potentiality. The findings from this study thus also suggest that sometimes the most unexpected, ordinary, and seemingly trivial occupations emerge is the most powerful in revealing the continuous and sometimes arduous process of crafting identities. In exploring the construction of identities, I have drawn heavily on Holland et al. (1998) to lay out several contexts in which to consider identities. The first was referred to as figured worlds, a context giving way to frames of meaning and allowing for particular interpretations to be made regarding the people, actions, objects, storylines, and ideologies populating particular worlds where individuals create and express their identities. Figured worlds also provided an avenue in which to conceptualize the influences of social power and privilege on people's identities 277 within the environments where they carry out their daily occupations. Furthermore, within the context of shaping and expressing identities, 1 endorsed a process of taking in and orchestrating discourses in the form of voices and mediating devices. I have attempted to build on research in occupational science, continuing to expose the complexity of ordinary occupations and the processes in which four individuals with spinal cord injury created and shaped multiple co-existing identities through active participation in occupations. Contribution To Occupational Science Occupational science is a rapidly expanding discipline, serving as a field for an increasingly diverse and rising number of recent scholarly pursuits. I believe that the present study contributes to this growth, and in particular to the advancement of understanding how people actively shape who they are through their occupations. This study builds on a line of research pertaining to the construction and expression of identities through occupations (Bagatell, 2002; Christiansen, 2004; Clark, 1993; Jackson, 1995). In the following sections, I summarize what I add to this line of research, exploring the various ways in which social ideologies and discourses relate to occupation, how the actual participation in ordinary occupations can yield powerful experiences, and how occupations can contribute to a more inclusive view of people with disabilities as members of society. Occupations And Social Ideologies In her dissertation, Jackson (1995) wrote, "Occupational scientists may wish to take a look at occupations as a way to understand how social ideologies become 278 reinforced in the typical daily practices of humans, in addition to how social ideologies influence choices for occupations" (p. 280). Indeed, some of the social ideologies pertaining to disability were critical in the exploration of identities as constructed and expressed by the study participants through occupations in daily practices. For example, as I described in Chapter 5, many social ideologies pertaining to motherhood undermine occupations of mothering as less significant and taken-for-granted (Falk, 2000; Farber, 2004). These social ideologies are confirmed and perpetuated in stories such as Rosalyn's, when she reflects upon the occupations of mothering, saying, "1 don't do anything [italics added]. I just [italics added] basically take care of her." Yet, when observing Rosalyn and her daughter, or when taking occupations out from a context of mothering, Rosalyn is explicit about conveying that these are deeply meaningful, satisfying, and life-altering occupations. Examples of this include Rosalyn's statement that: "I see life in a different way....Now I have something to look forward to, something to live for, you know, like my daughter," or, as I described earlier, her excitement when wheeling around the house with her daughter in her lap. I argued that undermining the significance of mothering occupations in her life was not an intentional act on Rosalyn's part, but rather based on aspects embedded within the social climate of the worlds in which she carried out her occupations. Rosalyn illustrated how many social ideologies surrounding mothering informed her self-reflections about what she did as a mother, and that these occupations were most central to her construction of identities. 279 Furthermore, the participants in this study illustrated in myriad ways how social ideologies impacted their choice of occupations. For instance, Wesley remained on the tennis court sidelines for years before joining as a player, largely due to the self-perceived images of dependence and disability that he thought he would embody as a "disabled athlete." A simple object transformed his identities from tennis spectator to tennis player through a shift in the way that Wesley participated in this world. As much as the tennis racket splint device served as a mechanism by which to open the figured worlds of tennis, it also impacted Wesley's choice of occupations. Moreover, the ideologies of "disability," deeply embedded in playing wheelchair tennis with assistance, overwhelmed Wesley it o initially choosing occupations of watching rather than playing. Thus, for Wesley, there were multiple factors that influenced his decisions to participate in occupations, but social ideologies were visibly important factors in his choices for occupations. All in all, Wesley tended to err on the side of caution and chose occupations based on high chances for personal success and symbolic representations of "ability." Sam chose a very different repertoire of occupations through which to create and express his identities, although he too was influenced by the social discourses and ideologies circulating in the worlds where he carried out his occupations. Sam illustrated how he constantly orchestrated discourses of disability against other, more personally desirable discourses of "living low" or "Semper Fi." Sam often chose occupations that involved high risk, many times to tight the social ideologies permeating a particular encounter; for instance when he insisted on riding the two- 280 wheel recumbent bike in the hospital parking lot or when he did a wheelie off a curb when traveling abroad. As Sam reflected upon these actions, he said, . .You know, 1 did it the next time, and that's all I needed to do was break my chair while I was over there. I thought about that later." In this moment of reflection, Sam acknowledged that the risk was high, perhaps too high, but, as evidenced by his actions, these were risks that he took in order to fight the disabling images inherent in overarching ideologies of disability permeating the occupations and the environments in which he lived. Power Of Ordinary Occupations In, Occupational Science: The Evolving Discipline, Johnson (1996) suggests that people are increasingly seeking the latest and greatest trend that will lead to more material and economic wealth, and perpetually celebrating the artificial while losing a more basic sense of their identities as rooted in the ordinary experiences of daily life. Johnson (1996) suggests that occupational scientists might include in their endeavors an exploration of the "minute acts of regression" (p. 23), the power of ordinary occupations such as "counting one's toes, sitting out in the air and in the sun, swimming in the ocean or a pond or a brook, and walking barefoot in the sand" (p. 23). Furthermore, he implies that expressing a sense of who we are in ordinary occupations is not always so "ordinary." It is not always enough to express identities; sometimes people need to ' declare" themselves (Johnson, 1996). To exemplify this concept, Johnson (1996) offers "taking time lighting a pipe (especially when someone is waiting for an answer).. .painting a picture on a 281 sidewalk, formally setting a table in a public environment to eat out of doors, or holding a class in a park" (pp. 23-24). From the perspective of a sculptor in the "art genre of social statement," Johnson highlights the power of the "individual" and the "ordinary," while maintaining a spotlight on the "social." Leaders in the field of occupational science have indeed placed great value on the "ordinary" in occupation (Clark, 1997; Jackson, 1995; Zemke & Clark, 1996). During my exploration of a repertoire of occupations impacted by ideologies of disability, and in honor of the early visions put forth in occupational science, I have repeatedly emphasized the significance of ordinary as well as unexpected daily occupations. In particular, I have given emphasis to the inherent potenza of ordinary occupations to bring about experiences of potentiality. I have suggested that potentiality provides a way of explaining the emergence and crafting of ongoing and future identities through occupations perpetually existent in the present. In shifting the focus to the doing and experience of occupations, identities become more than constructions and expressions of the "I" within people. Instead, identities become more fluid expressions of what percolates within the reservoirs of the "I," that is, within the beliefs, values, habits, social discourses, dispositions, and arsenal of mental tools that people continuously develop, orchestrate, and revise. From a perspective filtered through concepts of occupation and potentiality, people's present and future identities are aspects of who they are but have not yet realized. People are continuously building upon the inner "I" through experiences that are reflected upon and through imagining future possibilities. Moreover, potentiality is a matter of 282 sensing that "I can" despite not yet knowing quite how. Aspects of a self-perceived potential made possible through the actual doing of occupations have been of interest to researchers, and an area begging further investigation (Borell ei al., 2000). When Dylan rode the bus to the beach and took a stroll down the pier, he had no sense of what it would be like to experience eating a grilled cheese sandwich alone at the beach for the first time since his spinal cord injury. In fact, eating a grilled cheese sandwich represented something so ordinary that Dylan initially did not even reflect upon this as an occupation of much meaning. Dylan had started the day by planning to visit the beach, and his ambitions for that day had not been more than to ride the bus to and from the beach. However, it was in the unexpected moment of realizing that he was alone, several miles from home, and needing to eat without the assistance of a therapist, friend, or family member for the first time, that Dylan felt the anxiety of "how am I going to do this?" Without knowing how, Dylan knew he could manage lunch. He did not anticipate an experience of potentiality to come from this occupation ^ut it was in actually eating the sandwich at the beach in which potentiality became a way of interpreting this ..perience. Through this occupation, Dylan not only proved to himself that he could, but he was filled with a sense of "maybe I can..conjuring up images of himself on future dates at a nice restaurant. On that day at the beach, a seemingly ordinary occupation became the impetus for an extraordinary experience. In much the same way that eating a grilled cheese sandwich gave way to an extraordinary experience of potentiality for Dylan, so did riding a two-wheel 283 recumbent bike in the hospital parking lot for Sam. Without knowing how, Sam was filled with a similar sense of "I can.'' While riding a two-wheel recumbent bike was in many ways not as ordinary of an occupation as was eating a grilled cheese sandwich, these experiences similarly arose unexpectedly and out of ordinary daily contexts. In both cases, the bitterness of experiencing "can I?" before being filled with a sense of "1 can" was rooted in underlying discourses of disability. In both cases, the actual "doing" of the occupation gave way to a sense of agency and inherent potential existing within each of these participants. These examples also shed light on Johnson's (1996) two concepts pertaining to the expression of identities mentioned earlier. Whereas Dylan experienced identities through a "minute act of regression" (Johnson, 1996, p. 23), Sam expressed himself through "declarations of being" (Johnson, 1996, p. 24). Inothei vords, Dylan took a moment to reconnect with nature, recycling and reconstructing old identities into a new sense of himself as someone who could go out to enjoy a day by the beach, and possibly more. On the other hand, Sam expressed identities that were more avante garde, informing not only himself but others through his occupations with an outward-bound social message of "I can." Potentiality added a dimension of what was powerful about the experience of these occupations for the construction and expression of identities, but the social ideologies and contexts upon which I have also drawn heavily offer an important perspective on the meaning of these occupations in a broader social milieu. 284 Occupation As A Lens For The Broader Society Although an ambitious endeavor and one that continues to need more attention, I have aimed to honor the vision that occupational science can contribute both inwards toward further innovation and progress of the practice and scholarship of occupation, as well as outwards towara the betterment of the societies in which we live. Yerxa (1993) suggested that occupational scientists should contribute to mainstream discourses relevant to broader issues within society: "Such a basic science also assures that peoHle with chronic conditions or disabilities are viewed within the mainstream of human knowledge rather than being abandoned to an island of abnormality as is often required by an 'applied' science which sets them apart as 'pathological' or 'different'" (p. 5). The individuals in this study exemplify in numerous ways how they did not want to be "abandoned to an island of abnormality." Individuals living with disability constitute a substantial minority group within American society, and yet the experiences of disability can hardly be said to exist in the mainstream. Although many efforts have been made to "assess," "treat," or "cure" diseases and illness, little attention has been devoted to understanding the typical daily experiences among individuals living with spinal cord injury in society. And yet, as much as the acute medical stabilization and treatment of something like spinal cord injury is indeed critical, a greater portion of people's existence is spent living and experiencing daily life in society. Although my analysis is deeply embedded in theory, my aim has been to enliven and represent the voices of the participants, remaining true to their 285 stories. However rather than merely reporting their stories, I have shed light on critical processes, informing a"id informed by the theoretical analysis. I have placed identities at a level of action and experience through occupations, and I have suggested that it was often amid the humdrum of everyday life or the most ordinary occupations where participants in this study created and crafted their identities in various worlds shared with others. To the end of including individuals living with spinal cord injury within the mainstream, my hope is two-fold. I hope that these stories provide an insight into the possibilities of occupation as well as the power of the ordinary in people's daily experiences. Certainly there are differences in people's physical, mental, and spiritual worlds, but I think that these stories can be about a mutual and respectful understanding, and to the greatest degree possible, about the experiences of who we are through our occupations. Contribution To Occupational Therapy While occupational science is an academic discipline devoted to the study of specific features of occupation, occupational science is also dedicated to supporting the practice profession of occupational therapy (Clark et al., 1991; Wilcock, 2001; Yerxa et al., 1989). From a clinical perspective, an acute spinal cord injury results in a sudden disruption (Becker. 1997) in a person's life trajectories. Initially, acute medical assessment and treatment is absolutely vital for the survival of the individual. Over the course of subsequent months, the survivor of a spinal cord injury most often engages in a period of rehabilitation and transitioning back into the 286 community. As life unfolds, people increasingly diverge from the clinical path of standardized care to paths as diverse as the individuals themselves. Occupational therapists work with individuals who have spinal cord injury from the time of acute medical care to a time of community life. Acute medical units are environments where people become patients and where saving life itself is of utmost concern. Everyday life in the community, on the other hand, is about working, playing, crying, laughing, homemaking, and pursuing individual dreams, among many other things. As individuals recover from the acute stages of their injuries, they are increasingly in need of occupational interventions grounded in the community, and less in need of medical interventions (Becker & Kaufman, 1995). Occupational therapists as a collective have a responsibility in this way not only to be present along a spectrum of care spanning from medical to community, but also to comprehend the possibilities of occupational interventions within particular contexts and to implement these therapies along a continuum of care: Persons are coerced by new disabilities to learn to live with a different body, an invading alien tumor, or a confusing mind. To begin to embrace this new life, occupational therapists believe that patients need to integrate their disability into a new self expressed in occupation. (Jackson, 1998a, p. 471) In the hospital and clinic, interventions consist of developing skills in activities of daily living, adapting environments, or focusing on other occupations of interest and need through various treatment methods. Sometimes this might involve upper extremity strengthening in preparation for an independently consumed meal, while 287 other times it might involve a trip to the mall in preparation for community re-entry. However, the community aspect along this spectrum of care is not truly implemented until the individual is in fact living in the community where everyday dreams and potential are formed and realized. Yerxa (1967) writes, "Understanding patients' views of themselves, their worlds and their sources of satisfaction is central to the therapeutic process" (p. 152). Gaining a comprehensive appreciation for the form, function, and meaning of occupations is in keeping with the mission of occupational science and is essential to effective and relevant occupational therapy intervention (Zemke & Clark, 1996). The stories and analyses within this dissertation emphasize the importance of perspectives that place people and occupations into suitable contexts. As Johnson (1996) suggests, the power of ordinary occupations used by conscientious occupational therapists can yield effective outcomes for the people served, who "can be retaught by therapists where they have atrophied by alienation or have been severed by trauma" (p. 25). Chapter Summary Throughout the analyses in this dissertation, I have attempted to illustrate how the identity-making processes transpire through occupations among four individuals living with spinal cord injury. These processes were often facilitated or inhibited by environmental circumstances. I have established a view of occupation that encompasses man)' aspects, ranging from the mundane activities of daily life to the more momentous and exciting events. Because multiple social discourses are 288 constantly coming into play, a large part of the identity-making process involves internalizing and orchestrating discourses that inform a continuously evolving self- understanding. I have argued that the context in which occupations are enacted, the ideologies and discourses that inform and are embedded in these occupations, and the experiences of the participants as they carry out these occupations in daily life, are all critical aspects in making the concept of identities comprehensible. I have drawn from the work of several occupational scientists as well as scholars from other disciplines to show that occupation is crucial to the conceptualizing of identities. I have relied on in-depth narratives of people living with spinal cord injury to frame the complexity of renegotiating a sense of identities after a sudden onset of disability. In an attempt to honor the voices of the participants in this study, I have grounded my analyses in their narratives and everyday occupations. 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Justice and politics of difference. Princeton, NJ: Princeton University Press. Zemke, R., & Clark, F. (1996V Preface. In R. Zemke & F. Clark (Eds.), Occupational science: The evolving discipline. Philadelphia, PA: F. A. Davis. Zemke, R., & Clark, F. (Eds.). (1996). Occupational science: The evolving discipline. Philadelphia, PA: F. A. Davis. APPENDIX A Informed Consent 305 University of Southern California, Dept. of Occupational Science & Therapy 1540E. Alcazar St., CHP-133, Los Angeles, CA 90033 and Rancho Los Amigos National Rehabilitation Center 7601 E. Imperial HIVY, Downey, CA 90242 Informed Consent Form Title of Project: Principal Investigator: Department: Telephone Number: Occupation, Health, and Daily Living Context: Exploring the Experiences of Five Individuals with Spinal Cord Injury Eric Asaba, (PhD Cand.), OTR/L University of Southern California Dept. of Occupational Science and Occupational Therapy 1540 E. Alcazar St., CHP-133 Los Angeles, CA 90033 323-270-7071 (24-hour voice mail and numeric paging) Purpose Of Study: You are invited to participate in a research study about how health and meaningful activities play out in your daily life. The following information is provided in order to help you make an informed decision whether or not to participate. I hope to learn how you view health and meaningful activities within the context of your environment and your life. You are invited as a possible participant in this study because you sustained a spinal cord injury at least one year ago and you have never experienced a pressure ulcer (stage III or IV). Approximately five participants will take part in this study. It will be your responsibility to inform me of any other study that you are currently participating in, or decide to participate in at some point in the future while still in this study. If there is a conflict between two studies, you may need to forego participation in one study. Procedure: This study is exploratory in nature and will consist of interviews and observations. If you should agree to participate, there will be sixteen interviews over a one-year period. You will be interviewed three times the first month, twice per month between the second to fifth months, and once every six weeks thereafter until the eleventh month. You will be interviewed twice during the twelfth month. Interviews will be audio taped and conducted at a location convenient for you. I wili also schedule times when you would be agreeable to having me come and observe 306 you in your home, at work, or during some other event that is meaningful to you and pertinent to discussing your health. I will be the only person interviewing you although materials will be discussed in a team. Risks: There will be no interventions in this study. You will be asked only to participate in several interviews and observations during the next twelve months. The only foreseeable risk to participating in this study is that you may find certain personal events of your life difficult to share. There are no foreseeable additional risks for women who are pregnant. Benefits: Although you will have no direct benefits from participating in this study, you may find it beneficial to discuss your own values and perceptions regarding meaningful activity as it pertains to your health. Your responses will also help in developing an understanding of how some people establish and sustain health and meaningful activities. Your responses may also be beneficial to treatment planning relating to occupational therapy. Compensation: There will be no compensation associated with your involvement in this study. Alternatives To Participation: Your participation in this study is completely voluntary. An alternative would be not to participate in this study. Your health care or any membership in organizations will not be affected in any way by your participation in this study, or by declining to participate. Confidentiality Statement: The results of this research may be published for the information of other physicians and scientists. Your name of photographs will not be published or used without your consent. To comply with Federal regulations, we must inform you that your individual health information may be subject to re-disclosure outside the research study and no longer protected. Examples include potential disclosures for law enforcement purposes, mandated reporting of abuse or neglect, judicial proceedings, health oversight activities and public health measures. Offer to Answer Questions: Your participation will be supervised by Eric Asaba at 323-270-7071 who you may contact with any questions or concerns regarding your participation. If you feel you have been injured as a result of your participation you may contact the Principle Investigator, Eric Asaba at 323-270-7071. If you have any questions regarding your rights as a study subject, you may contact the University of Southern California Institutional Review Board Office at 323-223-2340 or the Rancho Los Amigos National Rehabilitation Center Institutional Review Board Office at 562-401-8111. You will be given a copy of this form to keep. Voluntary Participation and Withdrawal Statement: Your participation in this research study is voluntary. Your decision whether or not to participate will not interfere with your right to health care or other services to 307 which you are otherwise entitled. You are not waiving any legal claims or rights because of your participation in this study. If you decide to participate, you are free to withdraw your consent and discontinue participation at any time. Injury Statement: In the unlikely event that you should suffer any injury as a direct consequence of the research procedures described above, emergency medical care required to treat the injury will be arranged however the financial responsibility for such care will be yours. This does not imply any fault or wrong-doing on the part of the investigator or the study. Termination by Investigator Without Your Consent: Your participation in this study may be terminated without your consent if the investigator feels that you or another person is at risk of harm due to your participation in this study, or if the investigator unforeseeably needs to end the study. CALIFORNIA LAW REQUIRES THAT YOU MUST BE INFORMED ABOUT: 1. The nature and purpose of the study. 2. The procedures in the study and any drug or device to be used. 3. Discomforts and risks to be expected from the study. 4. Benefits to be expected from the study. 5. Alternative procedures, drugs or devices that might be helpful and the risks and benefits. 6. Availability of medical treatment should complications occur. 7. The opportunity to ask questions about the study or the procedure. 8. The opportunity to withdraw at any time without affecting your future care at this institution. 9. A copy of the written consent form for the study. 10. The opportunity to consent freely to the study without the use of coercion. 11. Statement regarding liability for research-related injury, if applicable. Agreement: I have read (or someone has read to me) the information provided above. I have been given the opportunity to ask questions and all of my questions have been answered to my satisfaction. My signature below indicates that I have decided to participate having read the information provided above. Name ofParticipant (Printed) Signature of Participant Date Name of Witness (Printed) Signature of Witness Date APPENDIX B Recruitment Poster 309 SCI RESEARCH STUDY A Study on Health Perspectives Among Individuals Living With Spinal Cord Injury in the Community The purpose of this study is to explore how personally meaningful and/or purposeful activities contribute io individual health. This is a longitudinal study involving mostly interviews over a one-year period. We are seeking individuals who have lived with a spinal cord injury for more than one year and who have never experienced a pressure ulcer needing surgical attention. Times and locations would be scheduled to meet your needs. For more information, CALL Eric Asaba APPENDIX C Categories Of Sample Questions 311 The following are only examples of the categories and types of questions that I propose to ask the informants. The indented questions represent the types of information that I am seeking and probes for further details. I realize that as I begin to interview the participants, my questions may also shift to focus more on one area than another. Moreover, I expect that these questions will result in many more and different kinds of questions and discussions. These examples are therefore intended to guide me as I begin my interviews. Occupational History Tell me about your childhood. Probes: play, toys, school, peers, family, Tell me about some of the happiest and unhappiest moments in your life? Probes: injury, issues related to family, school, friends, work, romantic involvements. Tell me about some of the most memorable times in your life. Injury Trajectory How would you describe your life before your injury? Tell me about what a weekday would be like. Tell me about what a weekend would be like. Tell me about work or school. How would you describe your life after your injury? Tell me about what weekdays were like following your injury. Tell me about your first weekend in the community after your injury. Have you had any secondary medical complications as a result of your injury? If not, what is the about your life that you attribute to not having any complications? Tell me about your experience with different type of support groups after your injury. How did you find support groups that were beneficial to you after your injury? What was the process like when you first joined these groups? What about now? Health Tell me about the three most recent times when you felt healthy. Tell me about the three most recent times that you felt unhealthy. Tell rre about three occasions before your injury when you felt really healthy. Tell use about three occasions before you injury when you remember feeling unhealthy. Probes: Can you describe the circumstances surrounding those times, such as your living arrangements, any significant relationships, and/or what kinds of occupations were central in your life at the time? Tell me about how your understanding of health changed since your injury. 312 Tell me about the things that have been most helpful or unhelpful to you after your injury. Can you describe your family's involvement in your care, how you re structured your schedule, or what kinds of activities you participate in? What types of experiences make you feel like giving up or not caring about events in your life?

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Asset Metadata

Creator Asaba, Mats Eric Ken (author)

Core Title "I'm not much different": Occupation, identity, and spinal cord injury in America

School Graduate School

Degree Doctor of Philosophy

Degree Program Occupational Science

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag health sciences, rehabilitation and therapy,OAI-PMH Harvest

Language English

Contributor Digitized by ProQuest (provenance)

Advisor Jackson, Jeanne (committee chair), Clark, Florence (committee member), Mattingly, Cheryl (committee member), Polkinghorne, Donald (committee member), Zemke, Ruth (committee member)

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c16-351028

Unique identifier UC11336714

Identifier 3180414.pdf (filename),usctheses-c16-351028 (legacy record id)

Legacy Identifier 3180414.pdf

Dmrecord 351028

Document Type Dissertation

Rights Asaba, Mats Eric Ken

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the au...

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus, Los Angeles, California 90089, USA