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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 “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: DP71312
All rights reserved
INFORMATION TO ALL USERS
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in the unlikely event that the author did not send a complete manuscript
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a note will indicate the deletion.
UMI
D issertation R jblishing
UMI DP71312
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UNIVERSITY OF SOUTHERN CALIFORNA
THE GRADUATE SCHOOL
UNIVERSITY PARK
LOS ANGELES, CALIFORNIA 90089-1695
This dissertation, written by
Mats Eric Ken Asaba
Under the direction o fh i s dissertation committee,
and approved by all its members, has been presented to
and accepted by the Dean o f the Graduate School, in
partial fulfillm ent o f the requirements fo r the degree o f
D O V T O ^ F PHILOSOPHY^
Dean
7 1 5 /0 5
D ate
Dissertation Committee
timusL M i'
Chair
ACKNOWLEDGEMENTS
It is difficult to describe the breadth of feelings that I have experienced over the
past few 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 Mattingly, Dr.
Donald Polkinghome, 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.
I l l
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
Hillock 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. I am grateful for
the editorial assistance provided by Faryl Saliman-Reingold. I wish to thank Audra
Stemke, 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.
IV
I want to extend a special thank you to Candice Huang for her continual support
and bright smile when 1 could not seem to find that energy within me, to Wenchun 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 in which to pursue my goals, and have created a sense of home
where I know that I always belong.
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 Reconnection With Tennis...............................................................................135
Objects In Figured Worlds: “That Is Exactly What I Need” ................... 137
Retiring From Tennis ............................................................................................141
Bringing Figured Worlds Together: “Forget That Tm Disabled” .......................... 143
Chapter Summary.........................................................................................................146
CHAPTER 5.................. 149
Rosalyn’s Story.............................................................................................. 149
“I Never Expected It To Happen” ...................... 150
vu
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 Wheelchairs” .............................................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
“Honey, 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
The 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
CHAPTER 8......................................................................................................................275
Conclusion.......................................................... 275
Contribution To Occupational Science...................................................................277
Occupations And Social Ideologies............................................................. 277
vin
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 fi’ om 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 2L* century.
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 Storv: The Humdrum Of A Dav In Weslev’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 for 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 pearl 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
with 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-moming, Wesley
has responded to his first batch of 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 lo 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.
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
resulting in a spinal cord injury with subsequent tetraplegia^. 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 all 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, um... thinking positive
and saying it's not so bad.
I can do it. I can do more than most able bodied, you
know. More than people with their full 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^.” So much hangs on a socially constructed
interpretation of disability, but the gap between what is being constmcted 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.
nondisabled, while retaining unique identities as someone who is “still me^,” 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 come to feel 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 personally 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
^ Borrowing from the title and story 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;
ICC?, 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,
Kadowaki, & 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.
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”
from 1983-1992 (Cole, 2004). Naturally, much of the research since the 1980s was
biomedical m nature (Ditunno & Formal, 1994; Führer, 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 1 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 e^gerience 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
young 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 tluoughout 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
12
(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 interactions,
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
14
living with a disability - specifically a spinal cord injury - in the 21^ century and
expressing identities in complex social worlds.
Significance Of Study
This study contributes to the growing 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 having 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, I 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 Therapv
In his book Still Lives: Narratives o f 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 to 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 writes 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 tread the 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,
Anders son, & 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 learn 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.
17
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 disability. 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. I will discuss more
concretely what is meant by “occupation” and the ways in which identities have been
explored 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
explore 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
18
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 frilly a series
of themes and analyses brought forth through the storied accounts of four
participants 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 leam 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 I 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'^, 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
- 1 outline some defining characteristics that inform the analysis in this dissertation.
Identity or identities have generally been interpreted as: (1) plural rather than
I use the term body to mean both the physical and the mental.
23
singular (Bagatell, 2002; Christiansen, 1999; Clark, 1993; Jackson, 1995;
Polkinghome, 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; Polkinghome, 1988), (3) formed and expressed through
narrative and occupation (Bagatell, 2002; Clark, Carlson, & Polkinghome, 1997;
Jackson, 1995; Mattingly, 1998; Mattingly & Gillette, 1991; Polkinghome, 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 constmcting 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 extemal 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 tlirough 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 Summarv
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. Hahn (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 extemal 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 w ious
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)
handicaps 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 paralysis 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 current 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 prevalent 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 being “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, “normal” 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 little 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^ 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
^ 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.
35
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 influential 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 with 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 bom with Down syndrome:
I fear.. .that children like James will eventually be seen
as “luxuries” employers and insurance companies
cannot afford...I do not want to see a world in which
human 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 normative, 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 dommant
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/7er 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 modem day political theory is reductionistic.
Section Summarv
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 spinal 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 comer 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 and
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 concem 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 such as
anthropology, cultural studies, psychology, and sociology.
43
Rejecting Some While Embracing Other Theories On Identities
In this dissertation I explore the experiences of individuals living with spinal
cord injury, and the ways in which these 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 (Polkinghome, 1988), enacted
through narratives (Mattingly, 1998), created and expressed through occupations
(Bagatell, 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 ftrom Cole’s (2004) study discussed his discontent with
viewing the 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-culturalist 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 evolution 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 Theorv 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^.
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, I
offer a simple description 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 well as
negotiate a process of embracing certain identities while rejecting others.
^ 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
47
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 concem 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 Identitv
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
“[ojccupations 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.
1 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 AA. 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 AA 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 leam 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 o f 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, I 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).
I 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 el 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 social 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 collective 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 alone.
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
Authoring 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 et 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 action. 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 interpsycho logical to intrapsycho logical :
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 “voices” (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 or 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 perspective 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. From 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 in 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 politics
inform social discourses of and against disability, I also explore these theoretical
applications in my analyses. However, in addition, I focus on the “doing” of
identities through ordinary everyday occupations.
Section Summarv
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”
(Polkinghome, 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, 1 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 bom. 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 o f words, something about this experience outside the 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? 1 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 “1 can,” which does not refer to any certainty
or specific capacity but is, nevertheless, absolutely
demanding. Beyond all faculties, this “1 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, 1 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 Summarv
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 I 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 m 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
CHAPTERS
Research Method
In this chapter I provide a background to the research methods used; I also
delineate the research procedures and 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 begin 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; Yerxa 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 paradigms of
qualitative research (Bailey & Jackson, 2002; Clark et al., 1997; Clark et al., 1996;
Mattingly & Lawlor, 2000; Spencer, Krefling, & 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; Polkinghome & 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
(Lawlor, 2003; Mattingly & Lawlor, 2000; Polkinghome & Gribbons, 1998;
Schwandt, 2001). Analytic methods informed by 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 events with a plot and assigning motives, intentions, and reasons
to actions (Becker, 1997; Bruner, 1986; Mattingly, 1998; Polkinghome, 1988;
Polkinghome, 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 bom 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 Southem Califomia (USC). The degree of
personal and academic fulfillment that has come from this initial opportunity is vast,
however to the extent that this influenced the methods 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 Southem
Califomia (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 influenced 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
75
and the events surrounding the development and treatment of the ulcer. As a
recruitment criterion, all of the participants m 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.
Participant Selection
I relied on techniques of network and convenience sampling (Polits &
Hungler, 1999) to recruit participants for this study. All recruitment efforts
76
commenced upon receiving final approval from the Institutional Review Board
(IRB) committees at both University of Southem California (USC) and RLANRC
(see Appendix A). Because I was able to rely on the institutional connections of the
broader USC-RLANRC Study referred to earlier, I 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. Second, I contacted
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). Lastly, I 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. 1 decided against enrolling another person, a man, because 1 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 grant 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^ (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, attended 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.
79
pseudonyms. Each participant selected their own pseudonym for the purposes of the
study. However, for some participants, 1 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 fi*om 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 her 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, I met
with Angela for 6 interviews lasting approximately 8 hours; I also met with Angela
on 3 other occasions for participant observation^. 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.
^ 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.
Weslev
Wesley was bom in southem Califomia 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.
Rosalvn
Rosalyn was bom during the 1970s and moved to California when she was
young. She attended elementary and secondary school in Califomia. 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 from 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 bom in southem Califomia during the mid 1950s. Sam did not
graduate from high school but did complete his GED while serving in the U.S.
81
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.
Dvlan
Dylan was bom in southem Califomia 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 Califomia. 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^ recorded interviews and participant
observation to analyze the experiences of participants in this study. In particular I
attended to the constmction 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
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. 1 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 1 used both semi
structured and narrative interviews, fused in-depth semi-structured interviews to
elicit responses to certain questions that 1 had formulated based on prior reading, as
well as to clarify responses from previous interviews; 1 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, I relied more
heavily on the more open-ended narrative interviewing techniques. Moreover, 1
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^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 level 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
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 1 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. I 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 tie together a
number of different events (Bruner, 1986; Polkinghome, 1988; Polkinghome, 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
86
analytic concern has been about what is conveyed in the messages of these stories.
Moreover, 1 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 tangential 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 recently happened in his life. His life was full of stories. His stories were
often very revealing and as I reflected upon many of his stories, I felt glad that he
had shared because I would not have thought to ask. Wesley for example, typically
87
responded with brief answers and once in a while would 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., 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 the participant’s choice, where we could interact in
a natural way rather than the more traditional face-to-face interview. My reasoning
88
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, I 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 I
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 degiee 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
90
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*^ laptop computer via USB cable using the software,
DSS Player Pro - Dictation Module, version 1.0.7 (Olympus, 1997-2001 a). 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
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 were deleted fi-om 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 & Cuba, 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 (Polkinghome, 1995). Then I delineate the process and shifting
94
in thinking that informed my final analysis. I will provide examples through this
section, where it serves to clarity 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
material required 11 hours of transcription. As I gained skill and improved my
efficiency, I 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, I 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*^ completed a total of 22 interviews.
The graduate seminar was titled OT590 Directed Research Semina/'^ 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 “abbs.” 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
My dissertation committee chair, Dr. Jeanne Jackson, and I designed this seminar during the 2002
Fall semester.
The seminar was offered during the 2003 Spring semester through the Department of Occupational
Science and Occupational Therapy at University of Southern California.
96
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 Analvtic 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. I 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.
98
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-
care] 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 m 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,”
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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 transcripts, 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
of 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
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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 in 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 man 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 firom 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
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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
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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. Polkinghome (1995) writes, “The
final story must fit the data while at the same time bringing an order and
meaningfiilness 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. Based 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) of the research
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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). Polkinghome (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
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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 of the 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 participant observation as part of a qualitative
research is deeply reliant on rapport building and mutually respectful discussions
surrounding the research topic(s) in question. 1 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 1 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
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researcher should avoid letting her or his subjectivity permeate the data or the
interpretations of the data to the greatest possible extent. 1 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 well 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
(OT590 Seminar) allowed for me to hear alternative views to my own thinking.
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Moreover, these seminars served as part of my mentorship in qualitative research.
T hird, 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
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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
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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, bom 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
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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,
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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 o f 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
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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.
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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
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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 firacture 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
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the water. William laid Wesley on a bed of 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 re framed 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 during rehabilitation, when he returned home there were many elements of
transitioning from rehab to the community that were a challenge. Re-integration into
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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:
When 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.
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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.
Disabilitv In An American Workplace: “Don’t Treat Me Anv 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
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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.
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Second, and more importantly within the context of this study, Wesley questioned
what I could leam 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, I 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
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at work because of Wesley’s spinal cord injury would undermine Wesley’s position
at his workplace. Not only would 1 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^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.
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).
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“Architectural, transportation, educational, attitudinal, and legal barriers combine
with awesome force to deny a majority ot disabled adults the opportumty 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
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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, I 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
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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
comer 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 I 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
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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
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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: Sw hols 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
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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, leams 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'^'.
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
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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.
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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
than “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, albeit 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 closes the door, she sees a
large poster of a bikini-clad model pinned to the back of 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
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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. My presence would displace
Wesley’s identities associated with being a manager at Caliwestech to that of
disabled individual, someone who 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 as 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
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these worlds. My focus remains on how Wesley goes about forming identities
through his negotiation of occupations between these social contexts.
Becoming A Tennis Player: Going To San Diego
It was toward the end of the first year of this research project that Wesley and
I planned a road 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.
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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 know. 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
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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 well.
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.
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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 spectator ship. 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, Bjom 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
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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 bom 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. Tennis comes to be
an outlet for Wesley to engage in an occupation with others who also use
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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 Glaring 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.
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The Reconnection With Tennis
Wesley’s transition Ifom the sidelines ot spectatorship to the court ot
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
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residual effects of the stroke limited her ability to participate in meaningful
occupations. I he analytic focus that 1 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.
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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^^.” 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 leam 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 Exactlv 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.
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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 was
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 the 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.
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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 fi*om 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
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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
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conceptual and material aspects of figured worlds, and
of the artifacts through which they are evinced, are
constantly changing through the improvisations of
actors. This context of flux is the ground for identity
development. (Holland 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 Wesley’s involvement in tennis was more than “just
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
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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 with 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 I 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
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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 constituting
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” within 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
I 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.
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I'm an equal. Get me on a beach in sand, 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 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
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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
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social context, as a starting point from which to explore the construction of identities
through occupations. Jarman (2ÜÜ4) 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 bom.
(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
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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
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in the community question his “sameness,” he is forced to reassess his position
within the figured worlds in which he has become a part.
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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 constmcts, 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
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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
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entire day, running between houses, preparing food, and taking care of last-minute
details. Alter 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 comer 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.”
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Meeting Rosalyn
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 fi'ont 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 décor 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
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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 comer 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. I 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
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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, I 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. I came to leam 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
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mothering became the single most important aspect of her life. The significance of
mothering for Rosalyn was made 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: “Mv 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^^.
She said that she tried every drug on the market that did not require the use of a
needle, confessing that, “I was using a lot of drugs for a long time. That was my
main focus - 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 described
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
Rosalyn actually hesitated to reveal her drug history with me during interviews when I 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.
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her drug use on more than one occasion, she says her initial 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 help 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
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was reckless. Now I look back on it and I'm like, ‘What were you doing’ - well, I
remember thinking it was kinda ftm!”
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
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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.
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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 fi'om the broader context, then it becomes important
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to present the mother’s perspective in more detail. Moreover, because figured
worlds are socially and culturally constructed, it is reasonable to expect multiple
worlds of motherhood to exist 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 parameters of motherhood from her perspective, I believe
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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
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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
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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. I 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 I 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.
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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 leam 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
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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 to a 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 know, 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. I 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.
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Rosalyn’S commitment to her daughter’s well-being was clear, and her intentions
were certainly tied to the ideals of mothermg. 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 lifest>de. 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. I mean. I'm glad he's here to
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help me. I mean, I have my parents, so, I 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, I think her grandma will probably
read her some stuff in Spanish.
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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. I 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 her
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 other through ordinary everyday occupations:
Like carrying her, I used to be like. Oh my God, how
am I 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, like I better hold on, 'cause I
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
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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 and her daughter. I witnessed this orchestrated
mother-daughter dance of mobility within the house. Sometimes as Rosalyn would
come around a comer, 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
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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 Dvnamics 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 bom 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
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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^^ in which power can be further explored.
Language As Power: “I Don't Do Anvthing”
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 formality 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
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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 relationship at a
given time. For instance, depending on the context and how an individual perceives
his or her own 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 language 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 the 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
speech; to comfort or to discomfort; to voice or to
silence. (Holland et al., 1998, p. 128)
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
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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, I asked Rosalyn to tell
me about her daily routine and about what she liked to do. I 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. I
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, I 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 unknown to me, 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 have tuned into what Rosal>m 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
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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 daughter 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 I continued probing for more details or rephrasing my questions to see if there
was more to Rosalyn’s words than I was hearing. I pondered the possibility 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
Mothering 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
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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 about 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 fact, 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 went
through that kind of shift of responsibilities in the
corporate world, 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, fimstration, 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.
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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 “work.” 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 in 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.
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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^^. 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.
Although I 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.
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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
language, 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 Evervdav”
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
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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, I 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!” I 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,
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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
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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 of disempowerment, 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
1 8 2
“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 Rosalyn, 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, Rosalyn
was with her daughter at a friend’s party. During the party, someone approached
Rosalyn’s friend to inquire about whether Rosalyn 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 Rosalyn, this was not an
inquiry of general curiosity but rather plain ignorance. As the exchange continued,
Rosalyn approached and entered into the conversation. At this point, Rosalyn 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.
Rosalyn: No, 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?"
Rosalyn: Due to my condition, how was it possible?
EA: I see.
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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 pregnant 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 fact, 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
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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 undercurrent 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. Holland 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
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to their honor. They noticed and were ever likely 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 al, 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 leam
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 your 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." And 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
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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^\ 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
I pondered these events for quite some time. I 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? I believe that the answers to the
questions I 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.
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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, that 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 mothering.
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
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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 bom out of public misperceptions. The
occupations of mothering, made explicit through my interviews with Rosalyn, were
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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
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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.
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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^^.” I 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
22
Sam used “wheeling” as an alternative term to refer to ambulating in a wheelchair.
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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. I 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 comer 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
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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 fiancé. 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, naturally-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^^, 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
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://wAvw.cureparalvsis.org/statistics. August, 2004).
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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.
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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 that 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
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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:
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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 o f 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 identities
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
friendships, 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
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participate in occupations with his friends, including going to restaurants and
celebrating birthdays.
Through 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 some of the most pivotal junctures in revealing Sam’s perspectives often
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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
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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 image 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
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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
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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:
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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
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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 D iff 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,”
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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 powerftil
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 Ifom 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 bom 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
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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.
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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-
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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 o f 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
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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, I 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
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when I visited Sam for our regular interview and he told me he burned himself while
cooking a tray of enchiladas. I 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 bum 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
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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 microwave.. .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—
Sam: 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
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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 later, when 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 discourse
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 magazine:
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 new 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)
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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 treatment 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
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hand cycle^"^. Sam thought the sport looked interesting and wanted to try, but he was
told that this was not something appropriate tor “quads.” After much negotiating,
Sam convinced the therapist to let him try. Sam described how 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 tor 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 coming 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
This is a 2-wheel bike propelled 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 front side to Side. With the outriggers in
the retracted or up position, the Hancffiike will tip over about 30 degrees. You won't fall out of the
seat but will, at first, fmd 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.” (http://www.mobilitveng.com. August 2004)
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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 t^p ed and
understood.
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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 expected that the staff that reported to him be on time, have their tasks
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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 emphasis 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. Bom to
defend, built to conquer. The steel we wear is the steel
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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 fiancé met over the Internet and had maintained contact hy 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 fiancé twice. His fiancé was from a region of the world
that was politically unstable at the 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
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already been noted^^. I asked Sam about his trip. He told me that, just after he
landed and met his fiancé, 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: “Nobodv Ever Dreams Of Being With Somebodv 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
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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
fiancé over the phone:
I 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 fiancé 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 I 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 fiancé in person. I had seen pictures of Sam traveling with his fiancé.
I 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
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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 fiancé, 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 fiancé that continues to contribute to
this process. Sam continued to state that his fiancé 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
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an unexpected bowel movement^^. 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 o f 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 fiancé 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.
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 fiancé as well as in a hotel in which he
was a guest.
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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
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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.
“Honev. Watch Out For That Curb”
A few days into his most recent trip, Sam and his fiancé went to a nearby
mall to pick up a few things and to peruse the storefronts. For Sam and his fiancé,
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, Sam was very much living low. When Sam and his
fiancé arrived at the mall they found there was no elevator. The dilemma that
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presented itself was that Sam’s fiancé 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 fiancé
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 fiancé 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 Tm 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 fiancé. In this case, riding the escalator
allowed Sam 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
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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 fiancé 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 fiancé 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 fiancé 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 would have
been great. So, anyway, so, she's, you know, learning I
can do, Tm 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
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quote, as Sam said, “of course, you know, I did it the next time.” When his fiancé
doubted his ability to do something, for Sam it was not so much of a challenge as it
was an indication that his fiancé was still not seeing him in a way consistent with his
own perspective. Moreover, he heard the socially dominant voice of disability in his
fiancé, something that provoked the inner voices of resistance to emerge ever more
forcefiilly.
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
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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 ahout being
able to spend time with his fiancé 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.
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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 fiancé to return. In the next
pivotal moment, however, he sees an opportunity in the arrival of his fiancé’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 fiancé 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
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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 fiillest. 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
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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 fiancé.
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 fiancé, 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
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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.
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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 occupations. Although I
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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 a l ’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.
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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 comers 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 o f 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
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occupations defined by possibilities rather than limitation. It became apparent that
reading this book was a pivotal event in Dylan’s re framing of past events, as in
narrative meaning-making (Bruner, 1986, 1990, 2002; Mattingly, 1998;
Polkinghome, 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 ftill-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 years, 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
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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
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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
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were interpreted as turning points, filtered through a lens he called “the power of
positive thinking.”
Those are kind of two turning points in my life that
really affected me a lot, to really have that bad
experience and then to decide 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 o f 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. He had struggled
to make sense of the events surrounding his 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
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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).
Se If-Authoring And Mediating Devices
In examining what The Power o f 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 to 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
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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 persuasive
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^^ (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
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 a l, 1998; Vygotsky, 1978).
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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
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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^^” (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 leams to understand his own life as
an A A life, and himself as an A A 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^^. This serves to alter the AA member’s
The drinking non-alcoholic 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).
“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).
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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
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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 o f 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 o f Positive Thinking influences
Dylan’s interpretation of events along a temporal continuum of past, present, and
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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 Disabilitv - Adding Complexitv 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 fi-om 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
Dylan 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
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adult male in the United States. Initially, this was tme 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 haying sex or pomos.. .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
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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
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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 unattractiveness, 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.
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you know. It works with kids, but, see, it really
bothered me because I'm an artist and they were tiying
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
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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 Refisurins 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
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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
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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
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position and instead said, “It really bothered me because I'm an artist.. .and I'm like,
T'm not doing this.’” The 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 connect 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 Potentialitv
Upon discharge from rehabilitation, Dylan engaged in a meaningful 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
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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 got a real nice pier. And when I got
down there, though, it was probably about 11 o'clock
going on 12ish and I realized, “Wow, I didn't think
about lunch and I didn't think about eating first, so now
what am I going to do?” So this is the first time that I
ever decided that I could eat but 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 I 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 I going to be able to handle that? Am
I going to make a mess? “ So I thought, “Well, how
about if I just go for a grilled cheese sandwich cause
that seems pretty fiat, easy, and not 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 I 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. I 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.
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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 I
going to do this?,” “How am I going to get my money?,” “What can I order so I
don’t make a mess?,” “Can I handle this?,” and 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 fiat, easy, and not much could fall out
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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 firiends 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
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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 begun
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 would 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
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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 as 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 Svmbol 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
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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, possibilities 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 similarities 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
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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
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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
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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 community.
Toward Conceptualizing Potentialitv 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 much 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
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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 tfom 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, I
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,
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1998; Mattingly and Garro, 2000). On the other hand, it is a story worth telling
because Dylan wondered, “Could 1 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 might 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 questions 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 to 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 Agamben (1999)
states, potentiality is a matter of a deep knowing that one “can” even though the
details might not yet have been revealed:
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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)
Something transforms Dylan during his initial encounters with disability. 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 guess 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
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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 Basis For More Agencv- Shades Of Potentialsv
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) do provide room for much
agency and for ideas about concepts likened to potentiality, the stories that I have
shared through this dissertation portray an even more open-ended agency expressed
in terms of more specific potentiality. Holland et al. (1998), do not describe human
potential in terms of the openness that I put forth here:
In the making of meaning, we “author” the world. But
the “I” is by no means a freewheeling agent, authoring
worlds from creative springs within. Rather, the “I” is
more like Levi-Strauss’s (1966) bricoleur, who builds
with preexisting materials. In authoring the world, in
putting words to the world that addresses her, the “I”
draws upon the languages, the dialects, the words of
others to which she has been exposed, (p. 170)
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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 bom 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
considered. What I 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 T ij^® Festival - 1 contrast the open-ended potentiality that I
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 I 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
Tij Festival has been described as the “relation of the rituals to Brahmanical cosmology and
ideology,” (Holland et al., 1998, p. 254), with an emphasis on singing and dancing although
contextualized 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., 1998, 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. (1998) 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 iç>on 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-ended and one that sets into motion a
sense of agency as well 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.
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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
(a 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. In this imaginary realm, the women are afforded a
sense of agency not generally perceived in their everyday, ori-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
Ill
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 they expressed these identities^ \ 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 A A storyline cannot create a sense of possibility, for it creates a possibility
of sobriety. However, these possibilities have been defined by a notion such as
“non-drinking alcoholic” within the AA storyline, and in some abstract 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
Holland et al. (1998) write, “Over the period of our research this time-bounded world began to
expand, l ij groups became less circumscribed in time, their compositions less controllable. Their
songs became available both in hmidwritten 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). The
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
time imagining possibilities, the potentiality within him is emergent in the moments
of enacting occupations in the here-and-now.
Chapter Suiiimaiy
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 potentiality. The kind of self-authoring that occurs within
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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.
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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, 1 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 as 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
Ill
within the environments where they carry out then daily occupations. Furthermore,
within the context of shaping and expressing identities, I 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 multÿle 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, “I 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 constmction 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 into 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 fight 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 travelmg abroad. As Sam reflected upon these actions, he said, . .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.” 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 Ordinarv 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 et 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, but it was in actually eating the sandwich at the beach in
which potentiality became a way of interpreting this experience. 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 “1 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 “I 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). In other words,
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 toward 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 people 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 and 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 Therapv
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 suiwival 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 many 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 mlorm 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. Indeed, it is in their voices that the processes of creating and
expressing identities through occupations could be most directly captured and
effectively revealed within myriad social contexts.
289
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304
APPENDIX A
Informed Consent
305
University o f Southern California, Dept, of Occupational Science & Therapy
1540 E. Alcazar St., CHP-133, Los Angeles, CA 90033
and
Rancho Los Amigos National Rehabilitation Center
7601 E. Imperial HWY, Downey, CA 90242
Informed Consent Form
Title of Project: Occupation, Health, and Daily Living Context:
Exploring the Experiences of Five Individuals with
Spinal Cord Injury
Principal Investigator: Eric Asaba, (PhD Cand.), OTR/L
Department: University of Southern California
Dept, of Occupational Science and Occupational
Therapy
1540 E. Alcazar St., CHP-133
Los Angeles, CA 90033
Telephone Number: 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 will
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 wül 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 of Participant (Printed) Signature of Participant Date
Name of Witness (Printed) Signature of Witness Date
308
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 o f this study is to explore how personally
meaningful and/or purposeful activities contribute to 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,
PLEASE CALL
Eric Asaba at 323-270-7071
310
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.
Iniurv 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 me about three occasions before your injury when you felt really healthy.
Tell me about three occasions before you injury when you remember feeling
unlicalthy.
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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Core Title I'm not much different: Occupation, identity, and spinal cord injury in America

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