University of Southern California Dissertations and Theses
Rehabilitative narratives of individuals with neurological illnesses and their caregivers in a rehabilitation unit in central Taiwan: An ethnographic study
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Rehabilitative narratives of individuals with neurological illnesses and their caregivers in a rehabilitation unit in central Taiwan: An ethnographic study
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REHABILITATIVE NARRATIVES OF INDIVIDUALS WITH NEUROLOGICAL
ILLNESSES AND THEIR CAREGIVERS IN A REHABILITATION UNIT IN
CENTRAL TAIW AN: AN ETHNOGRAPHIC STUDY
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
Copyright 2005 Ling-Hui Chang
UMI Number: 3219857
Copyright 2005 by
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My path to further my professional growth and gain a doctoral degree has been
long and has involved numerous projects. My dissertation is but one of them. Still, I
would like to take this opportunity to thank those who had helped me along the way.
First, I am incredibly grateful to the patients and caregivers in the study who so
graciously allowed me into their lives, particularly at especially chaotic and stressful
times. I also thank the rehabilitation professionals who so willingly shared their
experiences with me throughout the process made doing this research a remarkably
meaningful experience for me. I wish to thank my committee chairperson, Dr. Cheryl
Mattingly, whose intellectual creativity has greatly inspired me. Through classes and
many discussions with Dr. Mattingly, I have learned a great deal about what it means
to be a scholar. My committee members, Dr. Jeanne Jackson, Dr. Ann Neville-Jan,
and Dr. Donald Polkinghorne have provided invaluable suggestions and insights to
Last, a personal dedication of appreciation to my dear family. My parents have
provided unyielding support throughout my pursuit of a higher degree. My three
children, Han, May, and Wei, have put up with a mommy who has spent a lot of time
in front of computer and her papers. My dear husband, Jye, has in every way
supported my endeavor, including being a father and a surrogate mother to the
children while I was away. I thank them and this dissertation is not my own, but ours.
Table of Contents
Chapter One Introduction.............................................................................................1
About the Researcher .......................................................................................2
Theoretical Framework ....................................................................................3
Organization of the Dissertation ....................................................................22
Chapter Two A meaning-Centered Approach to Illness Experiences ........................ 28
The Diseases ..................................................................................................28
A Meaning-Centered Approach to Illness Experiences .................................30
Interplay of Illness Experience and Local Contextual Factors ......................46
Chapter Three Ideology, Culture, and Power in a Medical Institution ......................51
Biomedicine as the Dominating Ideology in Medicine..................................52
A Foucaultian View of Patient-Staff Interaction ............................................66
Chapter Four Research Design...................................................................................76
Ethnographical Approach............................................................................... 76
Data Collection ..............................................................................................79
Chapter Five Rehabilitation in Taiwan and the Unit................................................104
Introduction and Dominance of Biomedicine and Rehabilitation in Taiwan
Enduring Popularity of Pluralistic Approaches to Health and Illness..........108
The Rehabilitation Unit................................................................................ 112
About the Patients ........................................................................................126
Chapter Six The Day of the Days ............................................................................136
The Activities of The Day ............................................................................137
A Sea Of Suffering Without Boundaries......................................................147
Occupation to Pursue a Diet That Facilitates Healing .................................155
Chapter Seven Another Chance for Miracle ............................................................160
Making Sense of What Happened................................................................161
Another Chance for a Miracle......................................................................173
Use of Alternative Therapeutics in a Biomedical Institution .......................188
Chapter Eight Therapy is Pure Agony .....................................................................195
Therapy Time ...............................................................................................197
Compulsory Rehabilitation ..........................................................................198
Surrender to the Rehabilitative Narrative ....................................................201
Chapter Nine “Tsau is Good, Tsau will Bring Recovery”........................................222
“He (the Patient) Is Lazy. He Needs to Be Drilled Hard.”...........................224
The Need for A Tough Therapist..................................................................229
The Legitimization of the Tough-Love Approach........................................241
The Young/Minor and Yet Authoritative Therapist...................................... 246
Chapter Ten Occupation, Power Relations, and Ideology .......................................255
Desire For More Rehabilitation ...................................................................257
Occupation as a Means Tto Dominate and to Resist....................................275
Significance and Limitation of the Study.....................................................277
Closing Remarks ..........................................................................................279
Appendix A Patient Activities in a Rehabilitation Hospital.....................................299
Appendix B The Development of Medical Institutions from a Foucaultian
Appendix C Informed Consent ................................................................................306
Appendix D The Financial Impact of Rehabilitation on the Patients and Their
Appendix E Who to Care for the Patients................................................................319
This study adopted an ethnographical approach to investigate the lived
experiences of patients with recent debilitating neurological diseases and their
caregivers during an early stage of their illnesses when they were hospitalized for
intensive rehabilitation. A review of illness experience studies in medical
anthropology, occupational science, occupational therapy, and nursing reveals that
this issue has received scant attention, and neither has how these experiences are
mediated by the culture of rehabilitation and medicine.
A four-month fieldwork experience in an inpatient rehabilitation unit in central
Taiwan was conducted to explore the daily routines of the patients and caregivers in
order to understand their lived experiences with rehabilitation. Participation
observation was the primary mode of data collection, including regular observations
of the daily happenings and activities of the unit, a series of taped in-depth
interviews with patients, their caregivers, and rehabilitation professionals, and
documentation reviews. In total, twenty-one patient and caregiver pairs were
observed and interviewed. Among them, the researcher was able to observe and
converse with or interview nine pairs on an almost daily basis. Thirty-three ninety-
minute tapes were fully recorded and later transcribed. Several hundred field notes
were recorded. Data collection and analysis was guided by the concepts of illness
and medicine developed by the researchers interested in using phenomenology,
narrative, critical analysis, or occupational science to understand illness experience
and clinical encounters.
What was at stake for the patients and caregivers was to make sense of their
illnesses and sufferings and to effect changes to reverse the life disruption.
Participation in therapy in the therapy clinics, marked by pain and exhaustion,
received the priority in the daily routines of the patients and caregivers. Selective
Chinese pedagogical philosophies were incorporated in therapy and facilitated
patients’ compliance with rehabilitation ideology. Pluralistic approaches of illness
and healing in Taiwan provided the framework and context for the patients and
caregivers to make sense of their experiences and to seek alternative therapeutics to
facilitate recovery. However, certain occupations of alternative therapeutics, such as
herbal medication, were turned into an underground practice in order to comply with
the primacy of biomedically-oriented rehabilitation.
Chapter One Introduction
This dissertation is to explicate the rehabilitation experiences of patients with
physical disabilities and their caregivers with an ethnographic approach. The
literature review will draw primarily from occupational science, medical
anthropology, nursing, and occupational therapy. The conceptual framework of this
dissertation is based upon:
1. An occupational science perspective that explores occupation as a product
and process of the interaction of individuals and their environments.
2. A phenomenological understanding of illness and body.
3. The narrative concepts developed by the scholars who study clinical and
4. A critical analysis of culture, ideology, and power relations in
biomedicine and rehabilitation and it is the local contextual factors in
which the lived experience is situated.
Knowledge from these four theoretical foundations serves as a guideline for the
literature review and assists in the collection and interpretation of the data, which
derived during a four-month intensive ethnographic fieldwork on a rehabilitation unit
in central Taiwan in the summer of 2002.
The following three basic research questions that will be explored in this
1. To explore and understand the occupational experiences of individuals
who have had a sudden physical disability and the role of their
caregivers on a rehabilitation unit in Taiwan. What were their
occupations? How and what did the patients and those involved in their
rehabilitation see and experience in the activities on the unit
2. To explicate the interaction between the patients’ occupational
experiences and interpersonal relations with caregivers and therapists.
3. To situate the occupational experiences of the patients and caregivers
not only in a biomedical institutional context but also in the Taiwanese
culture which consist of pluralistic illness and healing approaches.
This chapter Introduction is divided into three sections beginning with a brief
autobiographical sketch of myself as a researcher and clinician. The theoretical
framework of this dissertation, as outlined above, is discussed in detail in the second
section of this chapter. Lastly, how subsequent chapters of this dissertation will be
organized is presented.
About the Researcher
I have been involved in the world of rehabilitation for over fifteen years, both as
a clinical occupational therapist and/or an educator in both Taiwan and the United
States. In my clinical work, I have always been very interested in listening to patients
and caregivers’ describe the stories of their lives. My interest has been reinforced by
the willingness and occasional enthusiasm of patients and families to share their
experiences. They spoke of their lives in medical institutions and at home,
disruptions caused by disease and disability, and their outlook on the future.
However, my exposure to patients’ lives on the rehabilitation unit in Taiwan was
limited to the context of the occupational therapy clinic.
I did not have the
opportunity to observe them on the rehabilitation ward on a regular basis. From the
little they shared with me in our casual conversations, their real lives on the
rehabilitation ward intrigued me, and, thus, grew into the subject of my dissertation.
This section begins with an examination of illness experience studies from an
occupational science perspective along with the benefits of such a perspective.
Definitions of occupation and the significance of exploring occupational experiences
in an institutional context are discussed. Following is the theoretical framework of a
meaning-centered approach. It particularly addresses the phenomenological
understanding of illness and body and the narrative theories developed in the effort
to study human experience from an ethnographic perspective. Specifically, the work
of researchers who do narrative and ethnography in clinical settings will be
addressed. References will also be made to the narrative concepts developed in
psychology in terms of how people make sense of their experiences. Last, but not
least, a brief review of the merits of a critical analysis of medicine and illness are
sketched to situate illness experience. For as Foucault (1961/1973a) described in his
study of asylums, the culture “silently organized the world of the asylum, the
methods of cure, and at that same time the concrete experience of madness” (, p.
Unlike occupational therapists in the United States who routinely go to the patient’s room
to get them for therapy or even provide therapy in the room, occupational therapists in Taiwan rarely
go to patients’ rooms. Most of the time, patients are brought to the occupational therapy clinic by their
Occupational science is a discipline devoted to the systematic study of humans
as occupational beings. What we do, i.e., our occupations, is a major source of
experience and defines our personhood. We are what we do. Occupations and
personhood are themselves inextricable (Clark & Carlson, 2000). Active
engagements in occupations allow us to create, develop, and express our identities
“Occupations are keys not just to being a person, but to being a particular person”
(Christiansen, 1999, p. 547). Choices and performance of occupation reveal an
individual’s values, identity, and competency (Persson, Erlandsson, Eklund, &
Iwarsson, 2001). Participation in occupation, when successful, also gives a sense of
competence and helps create meanings in our lives. This is particularly the case for
people with acquired disabilities who struggle to find meanings in their now-
disrupted lives (Clark, 1993; Labiberte-Rudman, 2002).
Personal meaning is a distinct quality that defines occupation. One cannot name
a particular activity someone else's occupation if they themselves do not feel its
significance. "An occupation is the experience of a person, who is the sole author of
the occupation's meaning" (Pierce, 2000, p.139). Some activities, although
insignificant or incomprehensible in their action, may carry meaning for a particular
person and qualify as that person’s occupation (Spitzer, 2003).
There are numerous attempts in literature to formulate a definition of
occupation that can be applied in both cross-context and cross-person situations. One
of the very first recent attempts to formulate a definition conceptualizes occupation
in the context of interaction between individual action and culture. Clark, et al. (1991)
defined occupation as the “chunks of culturally and personally meaningful activity in
which humans engage that can be named in the lexicon of culture” (p. 300). This
definition has served as a building block for many other explorations of what defines
occupation. The spectrum of definitions in literature range from the very general
“everyday tasks and activities in which people are actively engaged” (Laliberte-
Rudman, p. 12), to the very specific, such as Pierce’s (2000) definition. Her
definition emphasizes the experiential aspect of occupation stressing the importance
of studying occupations from an individual’s perspective. She defines occupation as
"a specific individual’s personally constructed, nonrepeatable experience … a one-
time occurrence " (p. 139).
Wilcock (1998) broadly defines occupation as “all purposeful human activities”
(p. 3) , which stress the important role of occupation in the process of human
evolution and adaptation. Engagement in occupation is indispensable to individual
health and human perpetuation. We humans have innate occupational needs. It serves
our adaptive function to survive as individuals and perpetuate as a species.
"Occupation is central to the human experience" (Wilcock, p. 25) and our "primary
health mechanism" (p. 11). It helps us develop as individuals and as members of
society. Joined participation in occupation contributes to binding people together and
forming the foundation of a group or community. Examples of such groups or
communities are a literary society, a hockey team and their fans, or the patients and
caregivers on a rehabilitation unit. Occupation has its adaptive function. By
“selecting and organizing activities (or occupations),” we “improve life opportunities
and enhance quality of life according to the experience of individuals or groups in an
ever-changing environment” (Frank, 1996, p. 50). The active process of occupation
helps fulfill not only a biological need but also socio-psychological expectations.
Occupational engagement can maximize individual potential and well being
(Christiansen, 1999; Wilcock, 1998). When persons are deprived of the opportunities
to participate in occupations by internal or external factors, such as illness or poverty,
they are at higher risk of losing their health and sense of well being (Lyons,
Orozovic, Davis, & Newman, 2002; Nagle, Cook, & Polatajko, 2002).
The definition of occupation that best serves the purpose of this study is
Wilcock’s (1998) who defines occupation as all purposeful activities. This is more
inclusive and avoids unnecessary omission of the spectrum of activities in which the
patients and caregivers participated on the rehabilitation unit. At the same time I try
to remain keen to the experiential and meaningful quality embedded in occupation in
a local context.
An increasing number of scholars have endeavored to investigate the relations
between occupation and health. An occupational science perspective can help to
illuminate aspects of illness experiences that might not otherwise be recognized,
such as the use of occupation centered interviews to enable the participants to reveal
their skills for occupational adaptation instead of traditional emotional existential
reflections that permeate most of the illness experience literature (Thoren-Jonsson &
Moller, 1999; Thoren-Jonsson, Moller, & Grimby, 1999).
In a study of how people with poliomyelitis manage their daily occupations,
researchers concluded that occupation was the participants’ primary means to express
a sense of agency and to reach a balance in life (Thoren-Jonsson, Moller, & Grimby,
1999). The participants predominantly used problem-focused strategies, stretching
beyond their physical capabilities and setting priorities, to cope with complications
of poliomyelitis, rather than the dominant emotion-focused strategies stressed in
coping literature. The participants did not dwell on their emotional response toward
disabilities in the interviews, but, rather, described more concrete details about
completing the task with the resources they had and utilizing various strategies to
achieve goals of, for example, completing a job assignment, making dinner, or even
using the restroom without asking for help. Through their competence in managing
daily occupations, participants developed a conception of occupational-self and a
positive sense of control. In fact, an individuals' ability to choose occupations is
thought to be necessary in gaining a sense of coherence and personhood following a
physical disability (Rozario, 1994).
In keeping with the western individualistic cultural ideology from which it
springs, occupational science and occupational therapy literature have traditionally
focused more on intra-individual characteristics than on contextual dimensions. Most
occupational science research centers on the individual, exploring the relationship
between occupation and the individuals’ identity, sense of coherence, adaptive
strategies, sense of well-being, and so forth as reviewed above (Christiansen, 1999;
Clark & Carlson, 2000; Collins, 2001; Laliberte-Rudman, 2002; Nagle, Cook, &
Polatajko, 2002; Rozario, 1994; Spitzer, 2003; Thoren-Jonsson, & Moller, 1999).
The current literature in occupational science provides limited understanding of
the dialectics of individual occupational experience and institutional constraints
(French, 2002). Very few studies have attempted to understand the occupational
experiences of patients and caregivers in the world of rehabilitation, where
occupation was first systematically put to use to restore health. In academic
disciplines that have studied illness experience in depth, such as medical
anthropology and nursing, there are also few studies that provide in-depth
interpretation of patients’ and caregivers’ lives within the context of rehabilitation.
As Kleinman (1995) suggests, researchers interested in healing tend to be drawn
toward "more ritualistic treatment" rather than "mundane everyday responses" (p. 9).
The "mundane everyday responses" are what occupational scientists claim to be
integral to human experience because daily occupations are the primary means
through which individuals are able to communicate and create a sense of personhood
and competence (Christiansen, 1999).
Since the 1970s, an increasing number of scholars, critical of biomedicine's
denial of the legitimacy of subjective experience and of its over emphasis on
scientifically based ideology, have adopted a meaning-centered framework to study
illness as a human experience. They did this to produce an “experience-near account
that renders the body present” (Good, 1994b, p. 55). This approach recognizes
subjective experience as a legitimate source of knowledge. It aims to hear the voices
of people who experience illness in an effort to understand their personal experiences
and their (i.e. our) world (Dahlberg, Drew, & Nystrom, 2002; Good). In other words,
a meaning-centered approach of illness experience investigates “how meaning and
interpretive practices interact with social, psychological, and physiological processes
to produce distinctive forms of illness and illness trajectories” (Good, p. 54). The
meaning-centered approach places the experience of the individual with illness and
the culture in which that experience is situated at the center of the analysis.
In this approach, illness has meaning – the patient’s resultant interpretation of
bodily changes that are seen as disease demonstrates “how the sick person and the
members of the family or wider social network perceive, live with, and respond to
symptoms and disability… the lived experiences of monitoring bodily processes
[with the disease]” (Kleinman, 1988, p. 3-4). The perspective of the patient and
family is emphasized. Illness experience is always culturally shaped and varies from
person to person. Disease, from the biomedical perspective, is the biochemical
occurrences within a patient’s body. Health professionals reconfigure the patient’s
illness problems into narrow technical issues “only as an alteration in biological
structure or functioning” (Kleinman, p. 5). In other words, the health professional’s
perspective of the bodily problem takes precedence over the meaning the patient
ascribes to the illness.
In the last two decades, some medical anthropologists further blurred the
boundaries between disease and illness by claiming that it is impossible to have a
clear distinction between these two because disease, considered as a biological
process, occurs in the body – the very ground of experience (Kleinman, 1995; Good,
1994a). Illness and disease are a “syndrome of experience” in which the diseased
body is the experiencing agent (Good, 1994b, p. 5). Illness is “knowable only
through interpretive activities,” which are always situated in a social, psychological,
and cultural processes (Good, p. 53).
Because of my interest in exploring the lived experience and everyday lives of
people with physical disabilities, I was particularly drawn to a phenomenological
approach, within the meaning-centered framework, that brings everyday lived
experiences and the body to the forefront. Moreover, the fascinating narrative
analysis of illness and healing has grown exponentially in the last few decades
among researchers interested in "what is at stake" for the person experiencing illness
(Kleinman, 1988; Mattingly & Garro, 2000; Mattingly, 2003c). These two
perspectives, particularly the narrative perspective of illness, have been influential in
the formulation of this dissertation. I first present a brief review of the
phenomenological approach to the body and lifeworld, and follow with an in-depth
discussion of the narrative approach pertaining to illness experiences.
Phenomenology is the study of phenomena, things or events, in the everyday
world. It studies from the viewpoint of the experiencing person of the structure and
essence of experience for a particular group of people. “Our everyday worlds are
valuable sources of knowledge” (Becker, 1992, p.11). One can gain important insight
into the essential nature of an event by analyzing how it is perceived as it occurs.
Scholars have proposed that lived experience and the meaning-making process are
best understood using a phenomenological approach (Becker; Van Manen, 1990).
The works of researchers, who have attempted a phenomenological understanding of
illness and body, have greatly contributed to the current insights of illness as lived
and embodied experience (Csordas, 1990, 1994b; Good, 1994b).
Phenomenological investigation tries, on the first level, to understand the
lifeworld of an individual through his/her lived experience. Lifeworld, according to
Merleau-Ponty, is the lived world, the world we have access to through our bodies
(Dalberg, Drew, Nystrom, 2002). Experience begins in the body and the body is a
“setting in relation to the world” (Csordas, 1990, p. 8). The body is the “creative
source of experience" (Good, 1994b, p. 5). Therefore, all our experiences are
Because the body is the locus of experience and orientation to the world, the
body is full of existential meaning. Any disease or accident that afflicts the body is
experienced in the body. A bodily affliction forces people to reflect on their
existence, perceptions of self, and worlds. “These organs, and the body itself, are
among the foundations upon which we build our sense of who and what we are, and
they are the instruments through which we grapple with and create reality” (Murphy,
1987/1990, p. 12). Our bodies are the medium through which we have access to the
lifeworld. When the medium is shattered, the lifeworld changes.
Phenomenology also asserts the inter-subjective aspect of our lifeworld. Being-
in-the-world means being-in-a-world-with-others. Our experience is so inter-related
with others that our lifeworld is a world of inter-subjectivity. Our relationship with
others affects our experiences of being-in-the-world (Dalberg, Drew, Nystrom,
2002). Illness not only strikes the person physically undergoing a pathological bodily
change but also afflicts every one closely related to that person.
As researchers, we do not have direct access to others’ lifeworlds because of the
primordality of the lifeworld. Researchers can however use observation and
narratives to get a glimpse of the others’ experiences through indirect apperceptions,
“part of our experience of other humans” (Dalberg, Drew, Nystrom, 2002, p. 65). In
other words, understanding others under the assumption that everyone is human and
there are similarities in the mental lives of all. These similarities provide an
approximation of their lifeworlds.
Much of what we know about illness we know through stories. (Good, 1994c,
The illness narrative is a story the patient tells, and significant others retell, to
give coherence to the distinctive events and long-term course of suffering.
(Kleinman, 1988, p. 49)
I love stories. In my clinical work as an occupational therapist, I have always
been interested in conversing with patients and caregivers, hearing their stories, and
observing their rehabilitation. In the process of developing a research topic and
selecting an appropriate theoretical framework for my dissertation, the use of
narrative theories to understand human experience and the culture of the local world
in which the experience takes place are especially appealing to me. Particularly
valuable to me are the narrative concepts, as developed from an ethnographic
perspective and/or built upon studies of illness and medicine (Becker, 1997; Good,
1994c; Kleinman, 1988; Mattingly & Garro, 2000). In addition, references are drawn
from the narrative perspective of human experience, developed in the fields of
psychology and sociology, to help understand illness as part of human experience
(Brunner, 1986, 1990; Frank, 1995; Mishler, 1999). A brief review of narrative
theories with regards to health and illness as human experience is presented here.
To appreciate individual actions, Bruner (1986) argues that it is important to
understand the mental organizations on which individuals rely and construct their
world – how people create and understand the worlds they live in. Narrative
reasoning is a mental process that enables people to relate seemingly sporadic events
within a plot, understand other people’s intentions and actions, and make sense of
what is happening (Bruner, 1986, 1990; Polkinghorne, 1995).
When asked to recount experience or events surrounding their illnesses, people
usually tell stories of the past and the present, disruptions and struggles in life to
overcome illness, the impact of illness, and hopes and despair for the future (Becker,
1997; Frank, 1991, 1995). Such narratives are in stark contrast to the impersonal
biomedical-oriented, matter-of-fact scientific and biological accounts health
professionals often recount about diseases (Bendz, 2003). Telling an illness story
enables the tellers to "give shape to experience and make past experience available to
sufferers themselves," (Good, 1994c, p. 164) as well as offer witness to the
experience of suffering and illness (Frank, 1995).
Narrative accounts enable the tellers to make sense of the past from the
perspective of the present within a particular cultural world. Particularly, when
experiencing a life disrupting event like a debilitating illness or accident, people
often turn to a narrative discourse to make sense of what is occurring, figure out why
something happened the way it did, and connect the cause to the consequences
(Garro, 1992; Garro & Mattingly, 2000). There is a need to deliberate on what
happened, to reconstruct and give new meaning to the past, and make sense of
experience. In other words, there is a need to create or tell a corresponding narrative.
Therefore, illness narratives are always more than the story of an illness but a life
that led to and was disrupted by their illnesses (Garro).
Despite narrative generated from differing contexts and by different narrators,
most narratives share some similarities in structure. For example, generally narrative
is temporally structured and shows a specific succession of events, usually a
beginning, middle, and end. The events and plot are connected into a coherent whole
(Bruner, 1986; Mattingly, 1998). However, the teller may not be aware of the
centering plot. The plot of a narrative, particularly an enacted narrative, is usually
“not the habitual enactment of pregiven cultural scripts but rather a more emergent,
improvised and socially orchestrated emplotment of action” (Mattinlgy, 2003b, p.
11). Mishler (1999) also suggests the possibility of multiple plots in a life story. “If
our stories are to present our lives with any adequacy, then they must leave room for
the complex interplay of multiple, and sometimes competing plot lines” (p. 80).
The idea of beginning and ending can sometimes be problematic as well. In
illness narratives, there is often an unfinished ending as the story is lived out, an
ending is not necessary and often not in sight (Wikan, 2000). A good beginning can
make a good story; however, there can be uncertainty in the idea of a beginning as
well. A beginning can be redefined as the tellers re-interpret the meanings of past
events in light of their present situation (Mishler, 1999).
The issue of coherence in a narrative structure is also under debate (Collins,
2001; Garro & Mattingly, 2000; Kirmayer, 2000; Mishler, 1999). The story is not
always coherent, particularly when dealing with illness. Stories that were told and
stories acted out were often fragmentary or undeveloped. “Where narratives are most
coherent, they also may be formulaic and distant from suffers’ experiences”
(Kirmayer, p. 153). The moments of breakout from coherence into chaos sometimes
tell more of the experiences of the actors than the constructed coherence (Kirmayer).
Mishler calls coherence of a life story an artifact, a “negotiated achievement of the
participants. We make them so (emphasis in original text)” (p. 85).
Given the controversial issues on narrative structure, it is not surprising that
some scholars have even argued that a formal narrative structure is essentially an
illusion (Barthes, cited in Garro & Mattingly, 2000). Garro and Mattingly suggest
instead that although there may not be a narrative structure, it is possible to describe
features of the narrative. This makes narrative particularly suited to the study of
illness and healing experiences (Mattingly, 1998). The following are characteristics
that have been influential in the interpretation of the data collected during this
1. Narrative is “event-centered … (and) experienced-centered”
(Mattingly, 1998, p. 8). People’s accounts of events are narratives. As
with occupations, action and experience are essential to narrative.
Researchers can infer from people’s narratives “what it feels like to be
in the story world,” and decode the values and beliefs that the tellers
or actors behold (Mattingly, p.8).
2. Narrative is constructive. When told retrospectively, the outcome is
already known to the narrator. The denouement enables the narrator to
derive meanings from previous events in terms of the end
(Polkinghorne, 1995, 2001)
3. Narratives can also be prospective. in terms of making sense of the
past and guiding present actions with a motive for an outcome that is
hoped for but not yet certain (Mattingly, 1998). In this sense, narrative
is about desire, a desire for a possible future. Narrative construction
thus becomes an evolving process, with breaches of the ordinary,
transformations, desires, and suspense – characteristic of the
experience of living with sudden physical disabilities.
4. Narrative is subjunctive (Bruner, 1986). Subjunctivity in narrative,
which is about possibilities and desires, allows people to draw
conclusions about what happened, or to imagine what might happen
“with varying perspectives that can be constructed to make experience
comprehensible” (Bruner, p. 37).
5. Narrative is context-specific (Becker, 1997). Although narrative
analysis focuses on the particulars of individual experiences, it
recognizes that these stories do not exist in a vacuum exogenous to
the particular context of the individual, but, rather, is “produced in
institutional contexts that give legitimacy to narrative ideas and
provide some voices with more resonance than others” (Lindenbaum
& Lock, 1993, p.xii). Experiences are constructed, interpreted, and
recreated through story-telling within the socio-cultural, political, and
economic climate of the society where they take place (Becker;
Mattingly, 1998; Mishler, 1999; Polkinghorne, 1995). It is only with
an awareness of the given cultural context of a given storyteller and
the audience for which the story is meant, that one can fully
understand the meaning of the narrative.
In summary, narrative enables the individual to make sense of experiences.
Illness stories, especially stories of chronic illness, share structural qualities with
narratives, such as action-centeredness, temporality, human desires and motives,
subjunctivity, and a centered plot. These illness narratives are the product of a co-
construction process between the narrator and the audience in the telling and
interpretation of their illnesses in their local worlds (Garro & Mattingly, 2000).
Having described the general features of narrative, a selective review is now
made of anthropological studies that adopted a narrative approach to illuminate
illness experiences from an experience-near and cultural perspective. The concept of
subjunctivity in narrative has been adopted to explore illness narratives (Garro,
1996). Subjunctivity enables individuals to derive multiple interpretations of
illnesses from personal experiences and available cultural resources. Based on
studies of an Anishinaabe community learning how to make sense of diabetes, a
relatively new disease to them, Garro suggests that contrary to the presumed absolute
scientific interpretation of disease in biomedicine, subjunctivity in narrative allows
people to selectively draw from cultural understanding of illnesses based on personal
experiences and history to reconstruct the past (Garro, 2000a, 2000b). They were
then able to formulate multiple interpretations of the diabetic that were distinct to
their own histories and needs and were able then to create their own illness narratives
Subjunctivity also allows the teller, listener, and researcher to explore the
various perspectives of participants in illness narrative because every individual who
participates in the construction of illness narratives may, and usually does, construct
a different interpretation of what is, at least objectively, the same illness experience
(Good, 1994c). Not only are those who physically suffer from pathologies impacted
psychologically and emotionally, but also all those in contact with the illness
including the people surrounding the patient and those recording and reading the
patient’s narratives at some point and to some degree share in and contribute to an
interpretation of the illness. Their interpretation can differ based on the context of
their “biographical situation.” “Experience is encountered, attended to, and rendered
thematic in terms of one’s unique situation, in light of one’s own special interests,
motives, desires, aspirations, religious and ideological commitment, and so forth”
(Toombs, 1992, p. 5).
Based on his studies on the experience of people with psychiatric illness in
Chinese and North American societies, Kleinman (1986; 1995) suggests that illness
is a complex cultural phenomenon and inter-subjective experience. Rooted in the
dialectic between a patient and a society, such illness experiences are often
influenced by the society’s political and sociological processes. Thus, meanings of
illnesses are often shared, negotiated, and mediated by both the individual and the
societal network. Embedded with cultural meanings and the web of shifting dynamic
power relations in the culture, illness narrative can serve as a mirror to the collective
experience and the power dynamics within the local culture that mediate personal
experience. In order for the researcher to stay close to the experience of the ill person
in interpretations and understand what is at stake, the researcher has to position and
interpret the illness story within a local social and cultural world.
Broadly speaking, narrative can be both stories told and action enacted. In
studying illness and health, the use of narrative in the textual form, via the
individual’s recounting of illness experiences, is by far more extensively researched
than narrative in action (Riessman, 2004). For example, Garro’s and Kleinman’s
research (discussed above) is largely based upon the verbal recounting of illness
experiences. As for narrative in action, the work of Mattingly is representative of the
recent interest in understanding the clinical world through enacted narrative (1994,
1998, 2000, 2001, 2003b, 2003d, 2004a, 2004b). Mattingly, studying a group of
occupational therapists in clinical practice and African American families caring for
their children with severe illnesses and/or disabilities, suggests that the “small
moments” and “typical routines” in clinical practices are sometimes infused with
healing drama. They take on a narrative form and share similar qualities of a textual
narrative, such as temporality, subjunctivity, and plot (Mattingly, 1998, 2003c).
Narratives of clinical encounters reveal the clash and negotiation of two cultural
worlds, medical and non-medical, in which the actors actively negotiate and
strategize to ensure their desires are fulfilled. The patients and families emerge as the
cultural broker. They learn “when to submit, when to resist, and how to collaborate”
with the medical world (Mattingly, 2004b, p. 2). The subjunctivity of narrative
allows room to explore the multiple perspectives inherent in clinical encounters.
Thus, approaching illness experience from a narrative perspective not only allows
understanding of the patient’s subjective experience; it also enables understanding of
the patient’s local world (Kleinman, 1995; Mattingly, 2003a).
The merits of a meaning-centered approach have been reviewed, with particular
attention to the phenomenological and narrative perspectives, to study illness
experience and the local worlds in which the experience is situated. The meaning-
center approach can be used in appreciating the contested and hegemonic nature of
narratives and the influences of specific contextual factors, such as social politics and
power relations, over individual experiences. This has left a few meaning-centered
minded researchers in conversant with a recently developed approach, critical
Critical Analytical Approach To Illness and Medical Institutions
A critical approach to illness and medical institutions developed in
anthropology “understands health issues in light of the larger political and economic
forces that pattern human relationships, shape social behavior, and condition
collective experience, including forces of institutional, national, and global scale”
(Singer, 1986, p. 128). In other words, this approach investigates how, in local
worlds, historical and macro-societal political factors in global health care systems
are manifested in health and illness representations. For example, a critical analytical
approach investigates how the social origin of illness and/or the practice of a local
medical institution in a particular place interact with local contextual factors, such as
politics, economy, and power relations in the levels of health care systems (Saris,
1995; Schper-Hughes & Lock, 1986; Singer).
A critical approach of medical practice claims that illness is often mystified
under the name of nature and is used to advance the dominance of the more powerful
party, which may be the government or medical establishment. Although it unveils
the effects of marco-level structures and processes in local illness representations and
medical practices, this approach sometimes runs the risk of “neglecting the
particular, the existential, the subjective content of illness, suffering, and healing as
lived events and experience” (Schper-Hughes & Lock, 1986, p. 137). Therefore, the
challenge of critical-minded researchers, who wish to stay near the experience, is to
eliminate such mystification and ultimately unveil the conflicts and resultant
resistance within local health care cultures. They must do this while entailing an
appreciation of humans as active agents who partake in constructing their own
experiences (Good, 1994a; Schper-Hughes & Lock).
With growing interests in a critical analysis of medicine and its practice in
various societies, biomedicine as the dominant ideology in western medicine has
been extensively criticized by many researchers. Moreover, many researchers have
become interested in the manner through which medicine becomes an arena of
competing ideologies, power manipulation, knowledge production, and
fragmentation or suppression of the voice of the sufferers (Kirmayer, 2000;
Lindenbaum & Lock, 1993; Lock & Gordon, 1988; Rapp, 2000; Rhodes, 1991,
1993; Young, 1993, 1995).
Organization of the Dissertation
This dissertation is divided into ten chapters. The first two chapters following
the Introduction are literature review. Chapter Two is meant to provide an overview
of the studies that adopted a meaning-centered approach to studying illness and
healing. When appropriate, the discussion is centered on the illness experience of
those who had a stroke or other neurological condition, given that most patient
participants in this dissertation suffered from neurological diseases.
Although the impacts of physical disability on activities of daily living are
discussed in most of the studies, the drastic changes in occupational patterns
following sudden physical disabilities, especially in the initial stage of the
transformation while in medical institutions, remains an issue relatively unexplored.
Also highlighted in this chapter are the conflicting findings reported in patients’
experiences with rehabilitation. Patients’ rehabilitation experiences, as reported in
research articles and autobiographies, contained stories of unpleasant experiences
and hard work that often led to disappointment. The dissatisfaction came from an
inability to establish a sense of continuity and an inability to return to previous
meaningful and cherished occupations; yet, most participants in the illness
experience studies desired more therapy. In lieu of this, patient satisfaction with in-
patient rehabilitation services somehow remains high. The conflicting findings do
not give a coherent picture of patients’ experiences with multifaceted and multilevel
As many medical anthropologists have pointed out, the study of the experiential
dimensions of illness lead not only to the phenomenology of the experience but also
to “the practices and ideologies that encode structures of social relations and power,
as these shape the rhythms of illness and therapies” (Good, 1994a, p. 134). Chapter
Three continues with a critical-oriented discussion on culture, ideology, and power
relations embedded in the practice of biomedicine, which permeates the world of
rehabilitation. Clinical interactions in particular, when explored from a critical
perspective, reveal the influential institutional structure and hegemonic and contested
nature of the experience (Kirmayer, 2000; Rhodes, 1991; Young, 1995). Kirmayer
asserts that researchers must endeavor to understand clinical narratives "against a
backdrop of information about the larger myths, ideologies, and institutions that
govern the beliefs and practices of the clinician and patient" (p. 175). A synthesis of
contributions from these scholars will be used to unmask the ideologies and
hegemony of the modern medical institution in which biomedicine is practiced, and
will ultimately make clear the repressed voice of the patient and practitioner.
Chapter Four focuses on research methods describing the steps taken to collect
and analyze data based on an ethnographic approach. Although specific steps are
outlined in the data collection and analysis in the proposal, the recursive process of a
qualitative study necessitates the improvisational flexibility and creativity of the
researcher in response to the ever-changing context of life and yet, at the same time,
abiding to the rules of qualitative research. Also discussed are the difficulties
encountered during fieldwork and necessary improvisation made to complete the
Chapter Five provides contextual information of the environment, particularly
the rehabilitation unit and the Taiwanese medical culture at large, in which the
patients and caregivers carried out daily activities and learned to “do rehabilitation.”
A historical perspective is taken to describe how biomedicine and rehabilitation were
introduced in Taiwan and their current status. The pluralism in medical beliefs and
treatment in Taiwan are described, which are particularly significant because they
play an important role in the rehabilitative experiences of both patients and
caregivers on the KMH rehabilitation unit. The second part of the chapter describes
the rehabilitation unit, including its physical layout, members, admission policies,
and average rehabilitation course of a patient. Some background information on the
patients and caregivers discussed in this dissertation is also given.
Chapter Six communicates the daily routines of both patients and caregivers on
the rehabilitation unit, with a focus on the caregivers’ perspective of how they took
on the responsibilities of organizing their days on the unit. Patients needed extensive
personal assistance in completing daily tasks and during rehabilitation and since
there were a limited number of nurses to meet this demand, it necessitated that every
patient provide a personal assistant at all times of day and night. The patient and
caregivers were essentially together all of the time. First, a general description is give
of daily life on the unit regarding how patients and caregivers select, prioritize, and
organize daily occupations to ensure maximal participation in the therapy clinics.
Many family caregivers expressed the feelings of being “stuck here all the time” and
“having to do so much” to care for their loved ones. The caregivers own health was
often negatively affected. The specific occupation of the preparation and
consumption of food is discussed in greater detail in this chapter.
Chapter Seven explicates an important occupation that carries significant
meaning to many patients and caregivers – the pursuit of alternative therapeutics to
facilitate recovery. Building upon the work of medical anthropologists on the
narrative explanation of illness, I suggest that the patients and caregivers made use of
the pluralistic illness explanations and treatments available in Taiwanese culture,
regarding health and illness, to make sense of their suffering in the context of their
life stories, to reclaim control of the healing process that was lost in the biomedicine-
dominated rehabilitation process, to restore the hope that rehabilitation professionals
so deliberately avoided giving or relinquishing, and to take full advantage of the
healing resources at their disposal. However, certain alternative practices, such as the
use of herbal medication, were censured by the rehabilitation staff. As a result, the
patients and caregivers had to devise a variety of strategies to conceal its practice
from the rehabilitation staff.
Chapter Eight focuses on explicating the lived experience of another important
occupation of the patients and caregivers on the rehabilitation unit – doing therapy in
therapy clinics. Lin’s experience with rehabilitation therapy, in particular
occupational therapy, is used as an example to illustrate the pain and agony many
patients went through to regain bodily control. Doing “compulsory rehabilitation” is
“pure agony,” as one patient exclaimed. A patient had minimal choice of what he
wanted to do and what he did not want to do in therapy. There was a concerted effort
from caregivers and therapists to make the patient reframe the pain and suffering as
“nutritious food for recovery.” Although the goal of rehabilitation is to reboot one’s
confidence and control with the body, the process of doing therapy ironically
intensifies a sense of alienation, objectification, and uncertainty in a patient after a
sudden debilitating disease.
It is important to note here that, the imposed pain and agony on patients in the
process of doing therapy may at times seem inconceivable. The tough love approach
to help the patient regain bodily control was in reality expected and even desired by
most patients and caregivers. A plausible explanation for the local contextual factors
that contributed to the acceptance and desire of such a tough-love approach is
examined in Chapter Nine.
Comparisons are drawn between the relationship of therapist and patient and
teacher and student. The prevalent Confucian-oriented educational philosophy in
Taiwan is discussed to make clear that the therapist’s tough love approach is in line
with the educational beliefs of patients and caregivers who consider themselves to be
students of the therapists. For example, it is believed that “only strict and severe
teachers will be able to cultivate good students” and that the effectiveness of a tsau
tough-love teaching strategy, which is frequently used in Taiwanese classroom to
physically and mentally drill students, gets the best results
Chapter Ten brings the analysis presented from Chapter Five to Nine together
with an occupational science perspective and situates the occupational experiences of
patients and caregivers in the context of power and ideology. Drawing from
Bourdieu’s social theories of habitus, doxa, and orthodoxy as well as Foucault’s
conceptions of disciplinary power, it is explored how structures and rules imposed on
daily occupation can be conceived as a means to inculcate a preferred ideology from
the institutional perspective. The occupational pattern of the patients and caregivers
on the unit also reflect their creativity in orchestrating their daily routines to meet the
rules and regulations of the rehabilitation units, and, at the same time, covertly
maintain their own health beliefs. As a result, participation in occupations can also be
interpreted as a means of resisting the exclusive dominance of a foreign, unfamiliar
ideology and of re-establishing one’s control in healing and life.
Chapter Two A meaning-Centered Approach to Illness Experiences
A meaning-centered approach helps to gain an understanding of the lived
experiences of patients with debilitating illnesses and their caregivers and the
ensuing rehabilitation. This chapter gives a review of a selective meaning-centered
literature on the illness experience with physical disabilities and lays out the
groundwork for interpretation of the analysis chapters.
Some background information on the nature of the neurological diseases that
patients in this study suffered is provided at the beginning. The rest of the chapter is
organized into two sections. Primarily drawing from nursing, occupational therapy,
occupational science, and medical anthropology, I present a synthesis of current
readings in nursing and occupational therapy that adopted a meaning-centered
approach to explore the illness experiences of people with neurological conditions
and resultant physical disabilities. The themes that are related to occupational and
bodily experience are further elaborated. Secondly, considering the specific focus of
this dissertation to understand how people experience rehabilitation and the limited
numbers of studies on the patients’ and caregivers’ lived experiences with
rehabilitation, a synthesis of the above literature pertaining to rehabilitation is
presented to highlight issues and needs for further in-depth investigation.
According to the census taken by Taiwanese Department of Health, cerebral
vascular accident was the second leading cause of death in Taiwan in 2002. Stroke
leaves a large number of people who require in-patient rehabilitation services. It is
the diagnosis of the majority of the patients on inpatient rehabilitation programs.
Taking into consideration of other neurological diagnoses such as brain cancer, head
injury, and spinal cord injury, people with neurological diseases cover over ninety-
five percent of the inpatient rehabilitation population (Hsieh, et al, 1996). I will now
use stroke and spinal cord injury as examples to describe the physiological nature of
the illnesses that brought the patients to the rehabilitation unit.
Stroke or spinal cord injury represents an assault, usually sudden, to the
individual’s body. Stroke is a commonplace term for a cerebral vascular accident
(CV A). The term refers to a blockage of a blood vessel in the brain due to a
thrombosis, an embolus, or a hemorrhage; the resulting brain damage often leaves a
person with permanent multiple deficits, such as impaired motor control and
sensation on one side of the body. Emotional, perceptual, language, and cognitive
abilities are also frequently affected (Woodson, 1995). Another commonly seen
neurological diagnosis on rehabilitation units in Taiwan is spinal cord injury. It,
unlike stroke, results in motor and sensory loss in the lower part of the body from
either the neck or waist down, depending on the level of injury on spinal cord. There
is usually no cognitive, perceptual or language impairments in these patients. The
onset of stroke or spinal cord injury is usually acute. For stroke, the progress varies;
it can take seconds or gradually develop in hours or days until it is complete,
although the latter is infrequent. A spinal cord injury often happens within a matter of
seconds, such as in a car accident or a fall.
Regardless of the difference in their diagnoses, the patients of an inpatient
rehabilitation unit usually suffer from multiple complications that severely limit their
participation in daily occupations. In addition to physical impairments, psychosocial
issues such as adjustment and social relation are usually among the issues that they
have to deal with (Woodson, 1995). Their recovery usually takes a long time, can be
months or years. In general, within an average of three to six months, stabilization
does occur, mostly at a lower functioning level than prior to the illness (Woodson).
Neurologically speaking, a complete recovery of the brain or spinal cord is nearly
impossible, the totality of the damage irreversible.
Although stroke was the second leading cause of death and disability among
Taiwanese in 1997, the illness experiences of these individuals are rarely explored,
let alone the experiences of people with other neurological conditions such as head
injury and spinal cord injury. On the other hand, in the last few decades, there was an
explosion of qualitative studies from medical anthropology, sociology, psychology,
nursing, and occupational therapy, occupational science, investigating the illness
experiences of people with physical disabilities in American and north European
cultures. In particular, nursing research dominates the textual representations of
patients with neurological conditions. I will present a review of relevant literature in
the next section.
A Meaning-Centered Approach to Illness Experiences
In Chapter One, I discussed the efforts of occupational scientists to define what
constitute an occupation and the merits of an occupational science perspective in
exploring illness experiences in general. In this section, I review meaning-centered
studies of illness experiences with physical disabilities from an occupational
perspective. When appropriate, the experiences of people suffering from neurological
conditions such as stroke are further analyzed because physical disabilities as a result
of these neurological disorders were the reasons the majority of the patients in this
study received rehabilitation.
Since the idea of occupation as defined by occupational science is relatively
new in the academic field, it is understandable that the term occupation has rarely
been used in illness experience research other than by occupational scientists. Of all
the illness experience studies on people with physical disabilities I reviewed for this
study, only a few in occupational therapy and occupational science had explicitly
identity occupation as part of the analytical focus and focused on the impact of
illness on occupation. However, a lens of occupation defined in the broadest sense as
all purposeful activities (Wilcock, 1998), or more specific “everyday tasks and
activities in which people are actively engaged,” (Laliberte-Rudman, 2002, p. 12)
was helpful for me to see the central importance of occupations embedded in the
lived experiences with illnesses described in the literature.
Occupational Changes after Debilitating Diseases
Experience with changes in occupational experiences is prevalent among almost
all the narratives told by people following physical disabilities. The sense of
occupational competence is often compromised following a physical disability
because of a sudden diminished ability to fulfill previous occupational needs. A sense
of discontinuity in maintaining the occupational patterns that they had established
prior to illnesses was prevalent. Illness experience studies are abundant with
narratives of individual struggles with dramatic changes in occupational patterns.
For instance, individuals with stroke first experienced the discontinuity of
familiar occupational patterns immediately following the disability. They could no
longer take their prior occupations for granted. This sense of occupational
discontinuity was sometimes intensified when they returned home. Problems
continually emerged as they tried to engage in previous occupations. Personal
hygiene chores might take twice as long as before the stroke, moving around the
home may become very difficult, and previously simple tasks such as getting clothes
out of the closet may no longer be manageable. Modifications and priorities in terms
of the occupations that mattered to them most had to be made (Becker, 1993;
Doolittle, 1992; Nagle, Cook, & Polatajko, 2002; Pound & Gompertz, 1998).
Another discontinuity frequently reported is the change in social relations,
manifested in the changed patterns of shared daily activities. The gradual loss in
bodily function instigated by the disease was often perceived as one of the major
reasons, if not the only reason, for the changes of the attitudes and expectations of
others, such as family members and employers (Monks, 1995). Changes in social
relations can be experienced through a new set of daily routines. People with
physical disabilities may have to negotiate who does what with their caregivers.
They may have to switch roles with their spouses. The previous monetary provider
may now have to stay at home and be forced to adopt a passive and withdrawn role
in interacting with friends because of limitations in mobility and energy (Jongbloed,
1994; Sisson, 1998).
For the people with physical disabilities, the close relationship of occupation
and self did not change but in some way intensified. Discontinuity in occupation also
meant a discontinuity in self, in life that is worth living. When life is disrupted
unexpectedly, such as by sudden physical losses and dramatic occupational changes
following a stroke, such a discontinuity sometimes can be seen as an end of life, an
impending death with no more hope for the future. One stroke survivor in Becker'
study (1997) stated, "A stroke does not just hit one side of your body. … It seems
that my whole torso – my trunk – is just totally messed up by the stroke. It is like
being dead inside and dead outside" (p. 56).
Therefore, restoring a sense of continuity in life and coherence out of life chaos
brought on by sudden disabilities necessitated that they re-evaluated life and
reorganized their life narratives (Becker, 1997; Hafsteinsdottir & Grypdonck, 1997;
Kaufman, 1988a, 1988b; Secrest & Thomas, 1999). Each person sought to define and
build links between the old self and their life ahead. A sense of continuity was the
goal people strove for to make their life worth living again. Also focused upon is the
restoration of previously cherished occupations (Becker, 1993;Clark, 1993; Doolittle,
1991; Dowswell, Lawler, Dowswell, Young, Forster, & Jeff, 2000), which was hoped
to be the bridge that can establish the continuity, bridging the present, past, and
Initially, most people viewed recovery as the restoration of continuity, that is,
their return to the existence they had prior to the stroke, marked by how well they
were able to resume the occupations that mattered to them and that gave them
identities (Becker, 1993; Doolittle, 1991; Dowswell, Lawler, Dowswell, Young,
Forster, & Jeff, 2000). While individuals focused in therapy on regaining the use of a
leg or a hand, such endeavors were only a small part of a larger plan. They expected
nothing less than full recovery for themselves, which meant being able to engage in
the occupations as they did or to resume the social position they occupied prior to the
stroke. Those goals were undoubtedly more ambitious and broader in scope than
those of their rehabilitative professionals, whose views tended to focus in objective,
measurable, and functional independence (Bendz, 2003; Kaufman & Becker, 1986;
Lawler, Dowswell, Hearn, & Forster, 1999; Wressle, Öberg, & Henriksson, 1999).
For many persons with stroke, the initial success in achieving a continuity
following the sudden disruption hinged on the ability not only to engage in
previously cherished occupations but also to return home upon discharge from
hospital rather than being placed in an institution (Unsworth, 1996). With prior
occupational patterns brought to a complete halt and their bodies not functioning in
the ways they would like, it was sometimes assumed that being home was the only
sign of continuity between the past and the future, and subsequently, the only reason
to want to go on living (Kaufman, 1988a). Home seemed to be the only context in
which life could resume its path.
In addition to the change and search for continuity, illness experience is also
characterized by ambiguity and uncertainty (Becker & Kaufman, 1995). Uncertainty
in chronic illness has been reported in numerous studies of illness experiences
(Kaufman, 1988a, 1988b, 1988c; Wiener & Dodd, 1993), with the body as the locus
of uncertainty about the future (Becker, 1993, 1997; Murphy, 1987/1990). People
with chronic illnesses have to deal with not only the universal indeterminacy
inherent in lived experiences but also deal with it “in exaggerated form and with
severely limited options” (Mattingly, 1998, p.18; Wiener & Dodd, 1993;).
Much of the uncertainty was related to the nature of the disease. For people who
experienced a stroke, a sense of living with uncertainty began early in the course of
the illness. Uncertainty in the course of paralysis progression following the stroke
and after the first awareness of neurological problems, such as weakness, was a
common experience, which might take minutes, hours, days, or even weeks to
complete (Ryson, 1990). Persons with stroke often did not know at the time of onset
that they had had a stroke, why they had it, or what caused it (Jongbloed &
Morgan,1990). The suddenness and unpredictability of the onset left them with the
fear of whether the progression would stop and in fear of when the next stroke would
occur (Bendz, 2004; Kaufman, 1988a; Doolittle, 1991). They did not have a precise
prediction of what would happen in the future with regard to their bodies (Becker,
1993; Bendz, 2004). In other neurological diagnoses, such as multiple sclerosis, the
course may be like a roller coaster, with exacerbation, remission, and no satisfactory
prediction of when stability will occur (Garro, 1992).
In the midst of all these uncertainties, diagnoses are often used as a cognitive
map to locate possible futures. For diseases like stroke, head injury, or spinal cord
injury, the illness course has, in general, a certain degree of clinical predictability.
For example, most recovery of function following a stroke is traditionally believed to
occur within the first three or six months after onset. In rare instances, functional
recovery may continue for years (Woodson, 1995). Recovery occurs fastest in the
first few weeks after the stroke and continues at a lower rate (Wade, 1992). However,
the multitude and complexity of the factors that affect outcomes make precise
prediction extremely difficult. All these factors intensify the reluctance of health
professionals to give patients a precise prediction of what and when to expect
recovery, which often exacerbates the patient’s sense of uncertainty about how the
illness will progress (Becker & Kaufman, 1995; Eakin, 1987; R őding, Lindstr őm,
Malm, & Öhman, 2003). The illness course is more like a “guessing game in which
prognoses are revised as the illness is lived out.” (Good, 1995, cited in Mattingly,
1998). This externally imposed uncertainty compounds already-nervous patients’
uncertainty about the future to which their lives will evolve.
As reviewed above, themes of occupational change are ever present in almost
every study on illness experience with neurological diseases, even though the term
“occupation” is hardly used in any of them. Much research in illness experience has
shown the totalizing influence of changes in physical abilities on people's
occupations. When they lose their abilities to perform daily activities, the sense of
competency and well-being are deeply affected. Lament about lost or changed
abilities to perform occupations and struggle to re-engage in some form or another
are prevalent in most illness narratives. Their abilities to return to prior occupations
were often used as a standard to assess the degree of recovery. These activities do not
have to be very grandiose. In fact, most of them are everyday routines, which are no
longer mundane and become significant with a symbolic meaning for the person with
acquired physical disability.
However, not much is known about the specifics of these changes, the process,
or what they are like at the earliest stage, that is, when the patients are still in hospital
and experience most recovery. With the exception of a few studies that
systematically documented the activity pattern of patients on rehabilitation units (see
appendix A for a review of patient activities on rehabilitation units) or explore the
subjective experiences of the patients and caregivers with rehabilitation via
retrospective accounts, the lives of these patients (and their caregivers as well) in
inpatient rehabilitation settings are scantly understood, let alone their occupational
experiences. The question remains: What kind of occupational choices were
available to them in an institutional settings? What are their occupational patterns on
the unit? How do they prioritize their occupations on the unit? How do the local
contextual factors, such as ideology and culture, facilitate or constrain their
occupational engagement? How does the notion of occupation work in a
biomedicine-oriented environment, such as a rehabilitation unit? How and what do
they see the role of occupation in their effort to maintain and improve their health?
The existing literature does not tell us much regarding these questions.
Alienated, Objectified, and Medicalized Body
Becker (1993, 1997) suggests that prior to bodily disruption, people tend to take
their bodies for granted. They move through their everyday routines without paying
attention to their bodies until a change in bodily functionality results in diminished
ability to carry out daily activities. This is an experience frequently encountered and
reported by people with physical disabilities (Murphy, 1987/1990).
Such a bodily disruption cuts through the routine of bodily experience and
shakes the fundamental trust in the integrity of the body (Becker, 1997). Persons
with acquired physical disabilities tend to ascribe more alienation and objectification
to their bodies. Since neurological disorders such as stroke and head injury are a
bodily experience instigated by traumatic changes in the functioning of the body,
there is no surprise that themes related to experiences with bodily changes dominate
many illness narratives with neurological disorders. The feeling of objectification
and alienation, such as “never quite being like oneself again,” was expressed by
many stroke survivors, even many years later by those without significant residual
physical disabilities (Doolittle, 1991, 1992).
For the stroke survivors, the neurologically affected body, the previous center of
experience, becomes an object that can be disowned, alienated, or re-integrated.
Many people with stroke were confronted with arms and legs that no longer worked
completely or at all. The shock of sudden immobility left individuals “suspended in a
passive, objectified body” (Doolittle, 1991, p. 237; Ellis-Hill, Payne, & Ward, 2000).
A sense of bodily integration was missing in the individuals’ ruminations on their
own bodies (Doolittle, 1992). The involved extremity was spoken of in a passive,
frequently referred to as “it” or “they,” rather than “my arm” or “my legs.” They
were treated as objects that had to be manipulated. This “bodily experience of
deterioration” dismantles the person’s life-world, creating feelings of “total
disability,” dependency, fear, and paralyzed self (Doolittle, 1991; 1992, p. 122-123).
In addition to objectifying their bodies after physical disabilities, individuals are
often encouraged to medicalize their bodies as well (Csordas, 1994b). The
rehabilitation process requires patients with physical disabilities to put their bodily
experiences under medical scrutiny. In other words, an increasing number of bodily
processes and behaviors that are considered as natural processes, such as the ability
to urinate or to eat, become medical problems that are subject to objectification and
With the medical professionals’ guidance, patients are encouraged to be mindful
of their bodies and to engage forcefully in “mind-over-body thinking” and “effortful
mental striving;” that is, directing their bodies with their minds (Eakin, 1987;
Doolittle, 1991). They have to learn to reclaim their own bodies. Patients often stated
that they had to “ask” the arm to move, “ask” the leg to lift, etc. They had to control
consciously and deliberately their bodies with their minds. In doing so, they strove to
regain a sense of control over their lives and remained actively involved in their own
recovery. However, the emphasis on the association of will and recovery makes
recovery a moral issue that can have negative consequences for patients. If the
recovery is incomplete – as it is for most patients with neurological diseases – the
propagation of this belief can foster feelings of guilt and self-blame, further
weakening their mental and physical well-being (Eakin, 1987).
Perceptions of Rehabilitation From Patients’ Perspectives
Although there were only a few studies that focused on the experiences of
people with physical disabilities with rehabilitation, there were a significant number
of illness experience studies that included the individuals’ retrospective accounts of
their encounters with rehabilitation, even though often in passing remarks, which
reflect the scant attention rehabilitative experience has received in literature, despite
of its importance in the patients’ pursuit of recovery. Very few researchers reported
observations as the rehabilitation took place (Pound & Ebrahim, 2000; Parry, 2004;
Also see Appendix A for patient activities in a rehabilitation hospital). This section is
to synthesize the themes related to these rehabilitative experiences reported in these
studies, for this dissertation focuses in the rehabilitative narratives of individuals as
This section is organized as follows: First, a relation is established between the
rehabilitation period and Turner’s (1987) liminality
. Although the majority of
studies here do not specifically refer to Turner, the idea was implicitly present in
many of them. Liminality is useful in situating rehabilitation in the context of the life
stories of the patients. Drawing mostly from the nursing literature, patients’
Liminality is a state of “betwixt and between,” describing a situation in which people are
separated from the place where they had been previously, but not yet enter the next stage. It can be
activated by a breach of health following an onset of illness. It is dominated by ambiguity, a common
theme in illness experience studies as previously reviewed. Some researchers have been begun to use
liminality to understand what happens after a physical disability (Clark, 1993; Mattingly, 1998).
perceptions of rehabilitation therapies, their responses to stagnation in progress, and
lastly, their levels of satisfaction with rehabilitative services are reviewed.
Rehabilitation implicitly means the restoration of health or restoration to a
previous capacity. Literally, the term rehabilitate means “to restore to a former
capacity” or “to restore or bring to a condition of health or useful and constructive
activity” (Merriam-Webster’s Collegiate Dictionary,10
ed.). However, the majority
of the people admitted into inpatient rehabilitation units suffered from multiple
health problems and never returned to a previous state of functionality. Some were
not able to partake premorbid activities in a personally meaningful and satisfactory
way and required extensive assistance from others (Doolittle, 1992). With the hope
of returning to previous lives even years after reaching a plateau, some people with
physical disabilities are stuck in a liminal state described by Turner (1987) as a state
of liminality, “betwixt and between,” separated from everyday life and in a place that
is not where they were before and not yet the place they would like to be.
In the societies which biomedical ideology dominates their primary health care
systems, admission to rehabilitation units can be considered as the ritual to a liminal
state. Initially, rehabilitation programs were conceived by patients, health
professionals, and families as an opportunity for transformation, as a transitional
period towards a better future (Bendz, 2003; Mattingly & Fleming, 1994). Health
professionals, such as occupational therapists, place a lot of emphasis on the
influence of this period for the future well being of their patients (Chang &
Hasselkus, 1998; Mattingly, 1998). Hope was maintained through participation in
therapy. It was believed that the therapy would become a meaningful experience for
their patients, hopefully significant enough to bring about transformation (Mattingly
& Fleming, 1994).
With so much emphasis on the importance of rehabilitation in recovery from
medical professionals in biomedical culture, it is not surprising that individuals with
stroke often received the impression that rehabilitation was the only appropriate
therapy for stroke, despite of their perceived lack of adequate understanding of
rehabilitation. Rehabilitation represented the only mechanism by which they could
influence the return of functional ability and thus partially control the recovery
trajectory following stroke (Becker & Kaufman, 1988, 1995; R őding, Lindstr őm,
Malm, & Öhman, 2003). Patients often spend a major portion of the day engaging in
therapies, both in hospitals and at home (Kaufman, 1988b).
related activities occupied most of their daily routines (See appendix A for a detailed
review of time studies on rehabilitation units), most patients still did not have a clear
picture of what rehabilitation is like, even after a prolonged period of intensive
therapy (Jongbloed & Morgan,1990; R őding, Lindstr őm, Malm, & Öhman, 2003).
They were confused in the specificity of the rehabilitation therapies, and unable to
differentiate disciplines like physical therapy, occupational therapy, and speech
therapy. They were unable to tell which one had been most beneficial. Patients were
The following is how one informant in Kaufman’s study described her day:
“After breakfast, I start with my exercises, and I have a program. I start down the walkway
on the walker. I go right down to the end and go back and forth twice, and that’s six times a day. Then
I ride the bicyle; then it’s the hand exercises. Really, it’s amazing. The exercises takes quite a good
portion of the day; I have so many. (p. 89)
also often unaware of the goals and various purposes of different disciplines (Cox,
Dooley, Liston, & Miller, 1998; Doolittle, 1992; Jongbloed & Morgan,1990). Most
narratives from the autobiographies of individuals with physical disabilities and
some from illness experience studies reviewed above have described fairly
unsatisfactory experiences with rehabilitation. Rehabilitation was described as
belittling, humiliating, "a big torture chamber
," dehumanizing and purposeless.
There was a tremendous sense of rehabilitation provided not meeting their individual
needs (Callahan, 1990; Clark, 1993; Hoffman, 1998; Murphy, 1987/1990; R őding,
Lindstr őm, Malm, & Öhman, 2003; Sabari, Meisler, & Silver, 2000; Wressle, Öberg,
& Henriksson, 1999).
Nevertheless, many wanted to continue therapy indefinitely because of their
belief that medical care could cure them or at least continue to help them in some
meaningful way (Kaufman, 1988b; R őding, Lindstr őm, Malm, & Öhman, 2003;
Sabari, Meisler, & Silver, 2000). The expectation that the hard, physical exhausting
work of rehabilitation therapy would be able to reverse effects of stroke and lead to a
return to normalcy is a prevalent theme in illness experience studies (Kaufman,
1988c, Jongbloed, 1994). When stagnation occurred or when the therapy had to be
terminated for various reasons, people were often devastated (Chang & Hasselkus,
1998; Hafsteinsdottir & Grypdonck, 1997; Sabari, Meisler, & Silver, 2000).
One day in a rehabilitation unit at Midwest in November, 2001, in response to my greeting
"how are you doing today?" one patient exasperated "I don't feel good. You have to send me back up
(to my room). I can't stand it anymore. This is a big torture chamber." His primary therapist later
explained it to me that he had not getting much sleep for the last few days and "he was just very tired
by all these therapies. But we have to give him therapy; otherwise, he will never get better."
Eventually, most people with stroke experienced a limitation in progress, a
plateau. They realized that their motor recovery had stabilized and that no more
significant change could be expected. Plateau periods occur as early as 2-3 weeks
following stroke, and individuals might experience multiple plateaus during the
course of rehabilitation. These were difficult times because the plateau – compared
with the rapid visible improvement in the early stage of recovery – in a sense is the
experience of a decline in the return of strength and motor ability. Individuals often
experienced a feeling of “going downhill” when they plateaued (Doolittle, 1991, p.
238; Hafsteinsdottir & Grypdonck, 1997).
Most people with stroke did not anticipate these plateau periods, nor had they
been informed of them by their rehabilitation professionals. The last blow came
when the professional services were withdrawn, which usually happens when
therapists no longer think further progress is likely. There was a traumatic sense of
abandonment and personal loss (Clark, 1993; Sabari, Meisler, & Silver, 2000). To the
individual, potential for improvement was defined by the presence of health
professionals working on rehabilitation activities. Withdrawal of rehabilitation
services meant the end of recovery, the end of improvement, and therefore the end of
hope (Doolittle, 1991).
Despite the discrepancy in expectation, confusion about treatment, and
occasional negative comments of the impersonal treatment of the rehabilitation
professionals, patients wanted more therapy and their reported satisfaction remains
high as reported by the limited number of studies on rehabilitative services
1995, cited in Keith, 1998). This high level of patient satisfaction is interesting for
two reasons. First, most patients admitted to rehabilitation for the first time knew
very little about the services. As was aforementioned, those who had already gone
through an intensive course of rehabilitation even reported a great deal of confusion
over the rehabilitative services they received. Therefore, the validity of their rating
some services about which they had no clear idea is questionable. In addition,
because most had no prior experience, and their experience with rehabilitation was
most likely to be a one-time deal, they had no baseline for comparison (Keith).
The literature thus presents very conflicting perceptions of rehabilitation
services. Although patient satisfaction is not the focus of this project, the
comparative analysis of studies on patient satisfaction with rehabilitation juxtaposed
with selective illness experience studies and autobiographies of people with
disabilities which found many faults with rehabilitation does raise the question of
exactly how and in what way do patients, especially inpatients on a rehabilitation
unit, experience rehabilitation?
Although there has been a rapid rise in studies investigating satisfaction in general health
care, such as family medicine, patient satisfaction in rehabilitation remains an area relatively
unexplored (Keith, 1998; Materson, 1997). Among the few studies targeted at rehabilitation services,
the majority had methodological weaknesses such as small numbers of participants and selective
sampling. People with stroke were often not included in the study (Keith). Moreover, the subjects
were predominantly individuals with orthopedic problems. Individuals with severe neurological
problems such as stroke were less apt to be included in the study because of their language and/or
cognitive impairments (Keith).
Interplay of Illness Experience and Local Contextual Factors
As I read more and more the studies reporting on the illness experiences of the
people with physical disabilities in the context of North America and Europe, I often
feel strangely perplexed with the themes reported in literature. Perplexed because
these themes did not stand out as something significant in my observation of the
patients whom I worked with in Taiwan. Were their experiences different? If yes, was
it because of differences in the context in which the experiences took place and/or of
individual differences associated with personal experience prior to rehabilitation?
These studies of illness experience with stroke and with rehabilitation reviewed
above reveal very little about the interplay of context and experience as well as the
context of health care systems in which these experiences were often situated, for
example, the world of rehabilitation that is dominated by biomedicine.
Some recent studies of clinical interactions, albeit in non-rehabilitation settings,
investigated the dynamics of human experience, ideology, culture and power or
attempt to situate individual experience "against a backdrop of information about the
larger myths, ideologies, and institutions that govern the beliefs and practices of
clinician and patient” (Kirmayer, 2000, p. 175; Rhodes, 1991; Young, 1995). The
insights from these studies can allow us glimpses into this phenomenon. For
example, Kirmayer's narrative analysis of a clinical interview is imbued with the
relationships of narratives to social power: how a psychiatric patient and her doctor
negotiated the authority and legitimacy of patient's bodily experience against the
values and beliefs each brought into the interview, and how the context of the
interview, such as the medical setting, power asymmetry, and the pressure for the
doctor to make a diagnosis, had led and constrained the structure of the interview.
For patients with physical disabilities, they often become deeply involved in the
health care system as they persist in efforts to cure their physical disabilities. Their
interactions with the medical system play a crucial role in shaping their experience.
For many of the patients involved in rehabilitation, interaction with their health care
providers, such as home health aid, nurses, therapists, and the bureaucracy of
insurance, had come to occupy much of their time and activity
. Good (1994a) gave
an example of one TMJ patient that lost her job because of the intensive time
demands in negotiating and conforming to the requirement of American health
systems. Although the goal of medicine for people with acute or chronic illnesses is
to bring their disrupted lives back, it often leads to the opposite end. “Conforming to
the schedule of the health care system and attempting to negotiate the irrationality of
the American welfare and insurance bureaucracies came to be a world of its own,
replacing the everyday world which had preceded it” (p. 128). A severe physical
disability following illnesses like stroke inevitably brings about the “unmaking of the
I had once interviewed a patient with spinal cord injury who visited the occupational
therapy clinic on an outpatient basis in 1998. He told me his daily routines. It involved three-
mornings-per-week visits to occupational and physical therapy clinics in the hospital I worked. On the
days that he did not come to the hospital clinic, he went to an outside independent rehabilitative clinic
operated by one physiatrist from the hospital three nights a week. The national medical insurance
system only reimburses three visits a week to the same setting. That is where the three visits comes
from. He would have attended more rehabilitative sessions if it would be reimbursed. He also went to
a Chinese clinic to receive acupuncture and manual manipulation out of his own pocket. In his own
words, “my life right now is to do as much rehabilitation as I can to get my strength back.”
world,” which is further shaped and mediated by social structures and practices (p.
A narrative of personal experiences with a chronic illness begs to be explored
“embedded within various institutional structures that influence its production as a
story" (Saris, 1995, p. 39-40). For individuals with disabilities and their families,
they often become deeply involved in the health care system as they persist in efforts
to seek a cure (Good, 1994a; Mattingly, 2003c). Their lives outside of the hospitals
and inside the hospitals became so intertwined the boundaries blurred. Therapy
clinics can be re-created at home and therapists in hospitals endeavored to simulate
home-like scenarios in therapy (Mattingly, 2004a, 2004b). The complex negotiations
and contestations that often surround illness inevitably lead researchers far beyond
the phenomenon of illness itself into the very fabric of everyday social life
Therefore, to gain a deeper appreciation of illness experiences situated in local
worlds requires researchers to investigate the voices of the individuals who are the
very agents of the experience and to situate the experience in the complex fabric of
the social world (Good, 1994c). Of this complex social world, I am particularly
interested in issues related to culture, ideology, and power in biomedicine. I have
reviewed literature pertaining the lived experiences with neurological disorders
(stroke in particular) in this chapter. In the next chapter, an analysis of the
institutional context in which rehabilitation takes place from an ideological, cultural
and power perspective is presented.
I want to briefly summarize the meaning-centered oriented literature on illness
experiences with neurological conditions here before moving on to the next chapter
on ideology, culture, and power in medical institutions in which illness experiences
of the patients in rehabilitation were situated. There has been increasing attention on
the illness experiences of persons with debilitating neurological diseases in the
context of American and European cultures within the field of nursing, medical
anthropology, and occupational therapy. Continuity and discontinuities in
occupational patterns following physical disabilities from an occupational science
perspective, and alienation, objectification, and medicalization of the body are the
dominant themes in these studies. The majority of the data from this research relied
on the patients’ retrospective accounts of how they experienced the diseases in their
Although the impact of diseases on activities of daily living is discussed in most
of the studies, the drastic changes in occupational patterns following sudden physical
disabilities, especially in the initial stage of the transformation, for example, when
they were in hospitals, remains to be an issue relatively unexplored. Very little is
known about the actual occurrences and the meanings of the changes in the initial
period of this disruption within the context of rehabilitation institutions. There are
very few studies that record and attempt to understand the rehabilitative experience
of people as it is lived out. This lack of data is mostly due to a methodological
weakness, the over-reliance on self-reported narratives, which will be further
discussed in the chapter on research method (Wikan, 2000).
In addition to the methodological weakness of over-reliance on retrospective
accounts of illness experiences, another issue that begs further exploration in the
illness experience literature with stroke and rehabilitation is the lack of in-depth
discussion of the interaction of institutional structure and illness narrative, that is,
“the condition of narrative production” (Saris, 1995). Saris defines institutions as
“bundles of technologies, narrative styles, modes of discourse, … erasures and
silences” (p. 42). He asserts that institutions have a definite role in the structuring of
narratives. In other words, issues such as the ideology and history of rehabilitation
and biomedicine have an influence on the local world of rehabilitative settings and
the rehabilitative experiences of patients and caregivers. With this last note, I move
on to the next chapter on critical-oriented literature regarding the culture, ideology,
and power negotiation of modern medical institutions.
Chapter Three Ideology, Culture, and Power in a Medical Institution
Medical institutions in most industrialized societies represent the first and
primary context in which personal encounters with rehabilitation occur. Thus, it can
be said that full apprehension of the lived rehabilitation experience is impossible
without giving consideration to the institutional context in which the experience
takes place. This chapter provides a critical analysis of the institutional context of
modern medical practice with regards to culture, ideology, and power relations,
drawn mainly from medical anthropology literature.
Biomedical ideology dominates rehabilitation ever since rehabilitation
establishes itself within medicine. Because a critical discussion on the culture of
rehabilitation is still very much absent in the current literature, this chapter instead
addresses biomedicine, in which rehabilitation must fit in order to gain its due
recognition, from a critical perspective. Particular attention is paid to ideology,
culture, and power. This chapter initially reviews the set of qualities that have been
described as aspects of the ideology of biomedicine from a Foucaultian perspective.
Next, Bourdieu’s conception of doxa, orthodoxy, and heterodoxy is used to explore
hegemony of ideologies and multiple discourses in medicine to deal with the ever-
shifting situations clinicians encounter in practice.
Despite the limited number of studies on rehabilitation, attempts are made to
relate the discussion to the rehabilitative culture by introducing a few studies done by
medical anthropologists regarding this subject. Finally, a critical review is given of
the interaction between staff and patients in medical institutions from a Foucaultian
perspective. In particular, an analysis focusing on the power differential and
negotiation between these two parties is given along with an analysis of the use of
occupation as a means to reinforce this power difference.
Biomedicine as the Dominating Ideology in Medicine
First, the ideologies of modern medicine in the context of institutional cultures
are addressed. Ideology in this sense is a system of ideas, beliefs, and propositions,
which serve the institution and justify the action of the staff and the patient (Frankel,
1989). It is a “local system of knowledge embedded within particular institutional
hierarchies and production processes” that are used to subvert rival ideas, coerce
reluctant followers, and serve the important interests of the dominant party. Ideology
is often cloaked in the name of objectivity and science (e.g., biomedicine) but is in
fact arbitrary and situational (Young, 1993, p. 118). Medical authorities often invoke
ideology to ensure that the preferred mode of knowledge and behavior is integrated
into the daily practices of the institution (Young, 1995).
Biomedicine is generally said to dominate the ideological structure in modern
medicine. This ideology permeates not only the culture within clinical settings, but
also permeates the education of medical professionals in order to ensure its
perpetuation. It is incorporated into most of the lay/folk models in industrialized
societies (Chang, 1989; Cheng, 1998; Good, 1994b). Biomedicine became a
discipline in the late eighteenth century (Foucault, 1963/1973b) and did not gain
dominance in global health care systems until after World War II. The growing
dominance of a mechanistic worldview facilitated the establishment of biomedicine
as a scientific discipline (Gordon, 1988; Martensen, 1995). The mechanistic
perspective of nature and naturalism as well as the philosophical view of individual
supremacy and individualism together have greatly influenced the formation of
biomedicine. The practice of medicine as a scientific field that distances the
individual from the environment in its study, along with these primary influences,
have helped biomedicine and its health professionals establish and maintain its
dominance (Foucault; Frankel, 1989; Gordon).
Biomedicine conceptualizes diseases from a naturalistic (i.e., mechanistic)
perspective as disordered biological processes within the human body. Biomedicine
holds disease as a natural phenomenon that follows the rules governing natural
courses: observable, explainable, and repairable by mechanical laws
Martensen 1995). Whereas human consciousness is on some level independent of
nature, the mind is seen to be in essence outside the body (Spretnak, 1997). This
classical mind-body dichotomy lays the foundation for a naturalistic/mechanistic
paradigm of the Western conception of the physical human corpus. This belief
stresses the individual’s responsibility to one’s own health (Gordon). The
independence of rational thought, it is hoped, keeps the individual emotionally
distant and permits one to objectively analyze one’s diseased body. A manifestation
The body is seen in this view as something of a fleshy machine, functioning according to
mechanistic principles (Spretnak, 1997). If a part of this “body-machine” breaks down, such as a
screw, mechanics (i.e. health care professionals) can repair it through the application of the rational
understanding of the machine at hand. The Human Genome Project is only the most recent
manifestation of the mechanistic worldview of a human body, as its progress upholds the idea that
every human functioning can eventually be traced to a gene (metaphorically speaking, a basic
mechanical part such as a screw) and then modified by deliberate manipulation.
of such rationality in terms of the ill persons’ medical encounters in westernized
health care systems is the emphasis on patient motivation and compliance. Both ask
the individual to detach an emotional response and to use self-control in dealing with
The emphasis on the association of disease and body and the dissociation of
mind and body in biomedicine tends to devalue patients’ subjective experiences,
which are the main sources of knowledge in meaning-centered research on illness
experiences, as discussed in the previous chapter. From the biomedical perspective,
disease is a legitimate pathological change in the body. The subjective symptoms of
patients, often filled with emotions, are not considered as legitimate knowledge but
rather as obstacles to the discovery of knowledge and an impediment to their
adaptation to disease. “In order to know the truth of the pathological fact, the doctor
must abstract the patient. … The patient is only an external fact” (Foucault,
1963/1973b, p. 8). People’s experience with disease is presumed to distort
professionals’ assessment of the disease and thus is not valued.
Medical professions impose the devaluing of subjective experiences onto their
patients. The individual who suffers from disease and physical disability is expected
to put aside an emotional response to physical disability, to analyze, and then to
make appropriate behavioral changes accordingly. For example, in the case of people
with chronic pain, substance abuse, or post-traumatic stress disorders, depression,
anger, and remorse are considered maladaptive behaviors, detrimental to progress,
and should be handled as soon as possible through consultation or other medical
means, such as anti-depressants (Frankel, 1989, Jackson, 2000; Livneh & Antonak,
1991; Young, 1995). “Denial” and “poor insight” are often used to describe patients
who do not agree with a medical professional’s assessment of their conditions or who
are not able to realistically reflect on their prescribed realities after a debilitating
disease. A team effort is often set forth to facilitate a patient’s acceptance of this
reality. It is this very autonomy from circumstance, the ability to disengage, stand
back, and reason that is considered the supreme hallmark of the individual in clinical
practice. Illness experience, if not irrelevant, is very marginal to the actual practice of
Despite the seemingly scientific and objective grounds of medicine, the value or
belief the medical establishment chooses to enforce in medical practice is often
arbitrary, depending on its potential contribution to the perpetuation of the regime.
For example, the clinical ideologies and therapeutic regimes in Young’s post-
traumatic stress disorder unit were closely related to the personal beliefs of the
clinical director as to what would and would not work for these patients. On the unit,
the procedures to assess and treat patients and the professional meetings in which
therapists discussed their patients were set up to ensure that the therapists and the
patients were inculcated into the values and beliefs embedded in the ideologies,
thereby facilitating the regime’s implementation and perpetuation.
Another example of the arbitrary enforcement by the medical establishment is
how the subjective experience is often marginalized in biomedicine. When needed, a
certain subjective experience such as motivation will no longer be devalued but
emphasized to advance the dominance of medicine, such as the authority of the
clinical staff. Clinical studies have shown that the rehabilitative staff believed in
“morale treatment” of people with stroke, that is, the staff needed to help these
patients maintain a “positive disposition” (Eakin, 1987, p. 538). They consciously
tried to boost their patients’ motivation with encouragement by avoiding discussion
of undesirable outcomes to their recovery, hinting at the possibility of a complete
recovery, or suggesting to the patient a strong linkage between will and physical
welfare. The rehabilitative professionals viewed patient motivation (and not, say, the
extent of physiological recovery) as the single most important factor in determining
functional outcomes for older stroke patients who underwent rehabilitation (Becker
& Kaufman, 1988, 1995). An expectation for a person to use rationality to take
control of life is observed in many medical settings, not only within medical units
but also in psychiatric units (Rhodes, 1993).
In summary, biomedicine is the dominant ideology in modern medicine in most
industrialized societies. Assumptions associated with naturalism and individualism
have helped biomedicine establish and maintain its dominance. However,
biomedicine founded on the mechanistic worldview does not persist without
criticism. The presumed autonomy of medical knowledge – that is, the knowledge
that is assumed to be free from exogenous factors, such as human consciousness,
religion, culture, society, morality, time, and space – has been refuted by many
researchers (Foucault, 1961/1973a; Good & Good, 1993; Gordon, 1988). Studies
have shown that a mechanistic gaze of the human body and disease is not
autonomous. This argument against the mechanistic perspective comes from fields
such as anthropology and sociology and is gaining recognition within the medical
For example, Good and Good’s (1993) study of the acculturation of medical
students into the medical world demonstrates that the students had to abandon many
of their preconceptions in medical thinking and learn a new set of semantics, values,
and thinking processes that were consistent with the medical world. Their
experiences were similar to people who have had to learn a new way of life when
entering a new culture. Therefore, Good and Good suggest that biomedicine is
indeed a learned cultural practice into which students need be acculturated. The
culture of the medical world, like many other cultures, also has a plural set of values,
beliefs, and perspectives, which sometimes contradict each other and lead to power
conflicts and struggles. Following is a discussion on pluralism and hegemony
reported in medical practice.
Multiple Discourses in the Practice of Medicine
As discussed above, biomedicine is the dominant ideology of modern medicine,
an ideology which simplifies illness as diseases confined within the body and leads
to exclusion of other medical frameworks that link health and illness to other non-
body factors. The exclusive nature inherent in biomedicine, in regards to other illness
and health frameworks, has received serious criticism from scholars and the public.
Dissatisfaction with biomedicine’s dominance and denial of the complexity of
illnesses has led many to search for alternatives to this medical perspective.
The conflicts for ideological dominance within medicine characterize what
Bourdieu calls a situation of doxa, orthodoxy, and heterodoxy (Bourdieu, 1977)
under which people buy into, but at the same time struggle against, the dominant
structure. Similar to Foucault, Bourdieu proposes a dialectic between power and
knowledge: “the theory of knowledge is a dimension of political power” (p. 165).
Doxa is the “misrecognition of arbitrariness” that is legitimized as the cultural
constructed reality, the “sense of limits” that every one has and that is taken for
granted “goes without saying because it comes without saying” (p. 167). In the field
of medicine, the knowledge of power is biomedicine. The question of biomedicine’s
legitimacy does not even arise. Orthodoxy and heterodoxy are distinguished from
doxa because they bring into consciousness and recognize the possibility of different
or antagonistic realities. This occurs when “the social world loses its character as a
natural phenomenon” (p. 169), and the unquestioned sense of limits is questioned.
Orthodoxy is to restore the “primal state of innocence of doxa,” and can be defined
as “a system of … acceptable ways of thinking and speaking to the natural and social
world,” still within the limits of doxa (p. 169). Heterodoxy is the “overt opposition
between right opinion and left or wrong opinion (italics added)” (p. 169) and to the
legitimacy of doxa. It offers different, often antagonistic, discourses as “the means of
expressing experiences usually repressed” (p. 171).
In reality, the practice of medicine in clinical settings is characterized by
multiple discourses in which the action of people is contingent upon the context and
the problems they are faced with, even though medicine is still assumed to be the
dominant ideology in the clinical world. Jackson (2000) describes this situation in
clinical settings of orthodoxy and heterodoxy as, “a dynamic process of domination
in which those subordinated within the practice both accept it as just and proper and
resist it” (p,13). Within the culture of medicine, the institutions or disciplines that
aim to help patients whose problems are least understood or who least benefit from
biomedical treatment are those where the orthodoxy and heterodoxy of ideologies
become a central feature. Examples of patients that these institutions or disciplines
aim to help are those with chronic pain, psychiatric issues, or I might add, those who
For example, a long and unsatisfactory search for biomedical diagnoses and
therapy is a common theme reported in the narratives of people with chronic pain
(Jackson, 2000; Garro, 1992). Endlessly and tirelessly, these patients admitted
themselves into biomedically-oriented programs and subjected themselves to
medical examinations and treatments in order to find biomedical justification for
their problems. Subsequent lack of precise diagnosis and effective treatment was a
constant source of dissatisfaction. Many were skeptical and frustrated as they
resisted the explanation offered by biomedicine. However, they continued to believe
in the efficacy of biomedicine to locate and cure the problem, at least strongly
enough to continue to resort to it. Valuing and accepting, yet resisting, the system
and its ideology bespeaks the tension arising from the problematic fit of biomedicine
with the complexity of human experiences.
Rhodes (1991) suggests that medical practice is like a swamp that lacks clear
boundaries. Instead of the exclusive visual and mathematical gaze that dominates
biomedicine as suggested by Foucault (1961/1973a), medical professionals actually
rely upon a multi-layered gaze for navigation through its marshy land. The
complexity of actual medical practices requires that knowledge be applied in a
localized and context-specific manner. These multiple layers are often not static, and
medical professionals cannot simply switch from one to another in a set order; rather,
they exist “in a state of tension, shifting according to the context, coexisting within
practitioners as contradictory or alternative ways of thinking” (Rhodes, 1993; p.
132). The staff in Rhodes’ study had to pick and choose, improvise, and adapt with a
multilevel gaze when facing the multitude of problems presented by their patients in
the acute psychiatric unit in which they worked. In practice, if a professional fails to
grasp the shifting nature of gaze and relies on only one track of reasoning in
decision-making, she or he fails to grasp in some key way the essence of practice
(Rhodes, 1991). As the director in Rhodes’ acute psychiatric unit said of a nurse,
“She knew all the rules but was totally useless” (p. 102).
Thus, in reality, multiple discourses along with the hegemony of biomedicine
more accurately project the clinical experiences and needs of professionals and
patients. This occurs as a result of the struggle to juggle theoretical knowledge and
the constraints of reality. They must do this so as to tackle the ever-present
multiplicity of medical problems that constantly occur in a shifting context (Lock &
Kaufert, 2001; Kirmayer, Groleau, Guzder, et al, 2003; Kirmayer & Young, 1998;
Rhodes, 1991, 1993).
The review of the ideologies of modern medicine and their dynamic relation in
the local clinical world is made to provide an ideological context in which illness
experience is situated. In medical institutions, ideologies demand people’s
compliance in thought and behaviors and therefore have a major influence in shaping
experiences (Young, 1993, 1995). A critical view of institutional culture is useful in
situating individual experiences in the complex web of the politics of power and
knowledge. As is previously discussed, human agency is constantly present
everywhere in all health behaviors. Medical professionals and patients alike, after
being indoctrinated into the doxa of medicine, are confronted with the complexity of
real-life situations and begin to engage in a situation of orthodoxy and heterodoxy.
Both struggle against, improvise, adapt, or completely overthrow the doxa and
change the culture of the particular institution.
Rehabilitation Situated in Biomedicine
In addition to the hegemonic and contested nature of biomedical practice
discussed above, a discussion on the ideology and practice of rehabilitation as it
relates to biomedicine is also helpful to appreciate the institutional context of this
dissertation – a rehabilitation ward in a biomedical hospital. Selective studies of
rehabilitation (although not done with a critical analytical intention) are reviewed
from a critical perspective. A short synthesis is first given of the development of
as a clinical specialty in order to underscore the struggle of
rehabilitation as it established its legitimacy within the medical field. The imperfect
fit between rehabilitation and biomedicine is then presented.
Although the concept of rehabilitation following physical disabilities has a long
history, the development of rehabilitation as a clinical specialty began in the late
nineteenth century. It flourished after the twentieth century’s two world wars due to
increasing governmental involvement in the medical management of veterans with
physical disabilities (Gritzer & Arluke, 1985). Since rehabilitation for physical
disabilities as a clinical specialty arose while biomedicine dominated the medical
field, it adopted several of the same assumptions in biomedicine, such as belief in
cure. This belief in cure is derived from the naturalistic view of the human body and
selective emphasis on the body-mind dichotomy in the name of motivation and
compliance (Kaufman & Becker, 1986
With the evolution of rehabilitation as a specialty and the increasing variety of
patients that rehabilitation professionals treat, there is growing recognition of
biomedicine’s inadequacies and of the contradictory beliefs between biomedicine
and rehabilitation. This results in questions of how to deal with the multiplicity of
problems rehabilitation professionals and patients face due to these inadequacies and
Medical anthropologists Gritzer and Arluke’s (1985) study of the history of rehabilitation
medicine in America is one of the most extensive and comprehensive resources in this area and
therefore is my primary reference for this historical brief.
Becker and Kaufman’s research
focuses on the socio-cultural mechanism of stroke
rehabilitation, and at this point in rehabilitation literature, seems to be the only relevant large-scale
systematic investigation. Their numerous publications from this study were referred to throughout my
discussion of rehabilitation when appropriate.
contradictions. Consequentially, rehabilitation specialists, while realizing and
accepting that the influence of biomedicine penetrates all areas of treatment, believe
that rehabilitation is indeed conceptually and practically different from the
biomedical model of care. This belief is not always suitable for patients in
rehabilitation (Friedland, 1998). Therefore, given the incongruity between
rehabilitation and biomedicine and given the history of rehabilitation rooted in
biomedical practices, it is conceivable that rehabilitation professions face similar, if
not greater, dilemmas within their practice in terms of pluralism and contestations of
The assertion that medicine’s purpose is to remedy disease and symptoms
impose upon rehabilitation and initiates countless conflicts within the practice. As is
aforementioned, a mechanistic worldview sees individuals as essentially a
combination of mechanical components. A disease is thus viewed as an insult to a
specific organ or organs of the person. The focus of treatment is to cure the
malfunctioning of a specific mechanical component. However, often the disease or
accident (for example, a stroke or spinal cord injury) that brings people into
rehabilitation is, given current technology, physiologically irreversible and thus, in
biomedical terms, incurable. Therefore, although rehabilitation professionals try to
conform to the biomedical doxa in an effort to survive as a medical specialty, they
are in constant confrontation with the fit of biomedical doxa to the reality of their
In an effort to conform, rehabilitation specialists engage in orthodoxy as
described by Bourdieu (1977), creating a different way of thinking that is still within
the limits of biomedicine. Since a cure and the total recovery from injury to certain
organs, like the brain and spinal cord, are often impossible, rehabilitation specialists
redefine cure and recovery to replace biomedicine’s struggle for total recovery. The
observable and measurable progress in the patient’s ability to perform daily activities
becomes the goal that rehabilitation specialists pursue during the patient’s
rehabilitation (Danieè, Winding, & Borell, 2002; Lawler, Dowswell, Hearn, &
Forster, 1999; Kaufman & Becker, 1986; Wressle, Öberg, & Henriksson, 1999). This
“recovery within chronicity” is the professionals’ attempt to fit into the dominating
biomedical ideology while endeavoring to develop an ideology that is situated to and
within their reality (Kaufman & Becker, p. 986).
When the limits of biomedicine and the necessities for rehabilitation intersect,
tension results for rehabilitation specialists; indeed, this tension is often cited as a
major source of dissatisfaction for therapists and is a major cause of decisions to
leave the profession (Chang & Hasselkus, 1999). The near-impossibility of total
recovery from stroke or spinal cord injury means that rehabilitation professionals
have no way of knowing how far a certain patient will ultimately progress (Kaufman
& Becker, 1991). Painfully, this uncertainty leaves professionals and patients alike
with a confusion of hope and disappointment, a “seesaw effect between hope and
hopelessness” (Becker & Kaufman, 1995, p. 166; Burton, 2000; Dowsell, Lawler,
Dowswell, Young, Forster, & Jeff, 2000; Wiles, Payne, & Murphy, 2002). Almost all
patients reach a plateau at which point very limited progress is expected in either
physiological improvement or functional independence, and this is often hard for
both professionals and patients to face. Influenced by a biomedical model that strives
for an ultimate “cure,” this plateau forces professionals to face their limitations in
“curing” others and to re-evaluate the ever-present influence of the biomedical
ideology on rehabilitation (Chang, 1996; Friedland, 1998).
Eakin’s study (1987) of the treatment of stroke patients in a Montreal general
hospital presents another ramification that has arisen from the ideological conflicts
between biomedicine and rehabilitation. Eakin found that the staff generally held an
attitude of “nothing can be done” and even feelings of “dislike” (p. 535) toward
stroke patients because of frustration due to the incongruity between rehabilitation
and biomedicine. This incongruity arose because the general hospital setting
emphasized cure and healing while no cure or chance of total recovery was possible
in these patients or for the nurses to work toward (Eakin; Roth & Eddy, 1967).
In summary, despite the general assumption of the autonomy of biomedicine as
an absolute science and the portrait of biomedicine as “monolithic ‘biomedicine’ or a
univocal medical ‘discourse’ ” (Good & Good, 1993, p. 82), biomedical knowledge
and its practice is in reality an irreducibly social and cultural practice that is nested
within society at large, and the relation between the institution and its people is
dynamic (Good & Good; Lock & Gordon, 1988). Biomedical knowledge has been
intensively criticized when its application fails to satisfactorily explain and resolve
medical problems which patients and professionals face (Lindenbaum and Lock,
1993). A critical analysis of biomedicine and its practice also reveals the unfitness of
biomedical treatments for the multiplicity of human illnesses. Orthodoxy and
heterodoxy of ideologies – complementary or contradictory to each other – more
accurately describe the experiences of professionals and patients, as exemplified in
some psychiatric units and rehabilitation.
A Foucaultian View of Patient-Staff Interaction
During the eighteenth century, as medical institutions began housing the ill and
mentally disabled, a power hierarchy was created in which the institutions’ staff
dominated the institutions’ inmates (see appendix B for a discussion of the
development of modern medical institutions from a Foucaultian perspective).
Foucault (1961/1973a) suggested that the concept of a family was often emphasized
in defining the institutions’ communities, which were composed of the inmates and
the staff who participated in the development and management of the institutions.
Together with a panoptican architectural and managing style, the family-like
community reinforced the subordinate status of the inmates as minors and the
authority of the staff as parents (Foucault, 1961/1973a; Rabinow, 1984a, 1984b).
This power relation is maintained through what Foucault called “disciplinary power”
that uses “hierarchical observation, normalizing judgment, and the examination” to
modify the dominated individual’s behaviors (Foucault, 1975/1977, p. 170).
“Discipline makes individuals (emphasize added in original text” (p. 170).
The practice of disciplinary power can be observed from the moment a patient
is admitted to the medical arena and voluntarily relinquishes himself to the scrutiny
of professionals who presume an authoritative position. The professionals, who
presumably possess a better knowledge of the diseases than the persons suffering
from the diseases, thus assume the primary responsibility in providing care. The
observation process begins, and patients fall under the intense scrutiny of the
A compilation of studies and medical assessments, in accordance to the
ideology upheld by the institution, is generally quickly conducted by various
disciplines in the initial period of hospitalization to “diagnose” the patients’
problems. In this examination, patients are classified and categorized. Their
behaviors are normalized in terms of medicine.
For example, if the patient were in
an addiction unit, as were patients described by Frankel (1989), the results of
evaluation determine precisely which parts of the patient’s pre-existing pattern of
thought and behavior need be adjusted to ensure a life of sobriety. This was also the
case for the patients in a post-traumatic disorder unit studied by Young (1991, 1995).
The staff decided what parts of patients’ experiences were appropriate to share and
how the patients should react to the narratives in their psychotherapy sessions that
aimed to facilitate healing.
Furthermore, in settings that require the staff to be a model for the patient and to
take responsibilities in modifying patients’ behaviors, there is a pattern of
hierarchical, “non-reciprocal observation” from the patient to the staff (Foucault,
Normalizing judgment is a practice that divides and classifies people, distinguishing those
who are normal from those who are abnormal (Foucault, 1975/1977). In medicine, this practice is
done in diagnostic tests or assessment procedures that differentiate the healthy from the sick.
1961/1973a). Not only are patients under constant observation by the staff, the
patients are all intensely observing the staff’s behavior toward other patients in an
effort to develop an understanding of the behavior expected of them, i.e. what is
considered to be ‘appropriate behavior’ in the unit. They had to learn what is normal
and strove to behave accordingly. Compliments, neglect, or chastisement from staff
continually maintained the patients’ reflection upon their behaviors, promoting self-
discipline and self-surveillance among the patients (Foucault, 1975/1977; Frankel,
1989; Rhodes, 1991, Young, 1993).
Like criticisms of the over-deterministic Foucaultian view of the state and its
people, researchers hold various views on the uni-directional, totalizing effects of the
disciplinary power that characterized relationships between staff and patients as
suggested by Foucault. Critics maintain that power is negotiated, shifted, and
constantly changing. For example, in rehabilitation, whether for people with
psychiatric issues (Frankel, 1989; Jackson, 2000) or for people with physical
disabilities, power does not always necessarily remain with the staff. Rehabilitation
emphasizes the importance of cooperation between the professional and the patient,
and, thus, there is a certain sharing of power between the two. However, the
authoritative position of the professional is still strong because of their function —
they are expected to teach clients what is best for the clients to do for themselves.
The active roles that patients are expected to assume is simply to mobilize their
rational thinking, be highly motivated, and comply with the therapy regime.
In the day-to-day practice of medicine in particular fields, patients are not
always at the periphery of power relations and sometimes are allowed to take a more
central role in their recovery (Frankel, 1989). In units where there is an emphasis on
the healing power of sharing among patients, such as programs for chronic pain or
addiction, fellow patients’ experiences and knowledge about specific problems are
considered to be valuable and worthy. Regular discussion groups to ensure that
patients share experiences, albeit modulated by the staff, are believed to have more
influence on fellow patients’ attitudes and behaviors than in other medical settings.
Thus, power is situated in the interaction among community members and does not
rest with one particular person. It is a model of fluidity and dynamism (Frankel;
Contrary to the Foucaultian view of the institution empowered over the
individual, studies have shown that patients and staff in clinical settings have the
power to create their own experiences and their own culture that, although largely
shaped by the society at large, is situated, particular, and fragile (Rhodes, 1991,
Pound & Ebrahim, 2000). Rhodes (1991), in a two-year study of an emergency
psychiatric unit in an inner city, concluded that the values, beliefs, and manners of
managing the work conducted by the staff in the unit reflect not only the culture of
psychiatry, medicine, and the community at large, but also manifest the situated
knowledge that the staff developed as a result of the specific setting in which they
functioned. Therefore, the continuation of that specific culture is, at least partly,
contingent upon the members who remained in the cultural world. In her Afterward,
Rhodes describes a visit to the care unit two years after her initial visit. She
discovered that the unit had changed and that the culture she had studied had
disappeared because the majority of individuals who created the culture had left the
Though today’s medical institutions are dramatically different, this manner of
distributing power between staff and patients remains. In fact, a clinical setting in
which the patient is actually the director is yet to be discovered. Furthermore,
complaints made by patients about the staff’s patronizing attitude in rehabilitative
narratives are not uncommon. The longevity of this power hierarchy reflects its
origin in the socio-cultural values inherent in the society that surrounded it and the
biomedical ideology that has dominated the medical institution since its inception.
Occupations as a Means to Reinforce Disciplinary Power
The concept of occupation as developed in occupational science has been
traditionally considered in-line with a meaning-centered approach because of its
emphasis on meaning and agency as reviewed in Introduction chapter. Only in recent
years have some researchers called for an investigation of the local contextual factors
in the practice of occupation, such as power relations, politics, and economics. For
example, Smith (2003) called on occupational scientists to examine “the relations,
organizations, and forms of power that intersect with and organize the everyday
world” (p. 61). A few occupational scientists have also included the contextual
factors in part of their exploration of occupation (Molyneaux-Smith, Townsend, &
Guernsey, 2003; Nagle, Cook, & Polatajko, 2002; Pierce & Frank, 1992; Whiteford,
With a feminist and occupational-centered approach, Pierce (1992) explicates
the caregiving experiences of a mother whose baby was born with complicated
medical needs. Pierce highlights how this mother built the caregiving occupations
within her and her family’s routines, managed the abyss of the medical
establishments, such as health insurance, medical equipments, and a variety of health
care services each with its own agenda. The mother was able to create a schedule in
which she met her baby’s needs, fulfilled her own needs of being a mother, and
advocated on behalf of her baby.
Molyneaux-Smith, Townsend, and Guernsey (2003) explore how certain
environmental factors had an influential role in limiting the occupational experiences
of some Canadian farmers with disabilities. The local contextual factors reported
included insurance, local and national farming policies, and community resources,
such as the availability of adaptive equipment. This type of research situates
occupation in a local context – “in a web of family, community, governmental,
insurance, banking, and other financial conditions” (p. 19). This section is an attempt
to echo this endeavor by taking a historical-Foucaultian perspective of how
occupations were used in medical institutions.
Occupations in the form of externally imposed daily routines are used as a tool
to control patients’ behavior and maintain the power hierarchy. Externally imposed
daily routines date back to the rise of moral treatment in the management of mental
asylums in the eighteenth century. When asylums were first built, regular
employment and work were utilized in the institution to organize the lives of the
inmates, apparently in the name of “moral treatment” (Foucault, 1961/1973a). It was
believed that a regular routine would heal both the body and the soul of mentally sick
patients. The staff dictated the rules and formats of these workshops. They decided
what was best to initiate the healing that was deemed necessary for the inmates
Today in many medical institutions and therapy units, the healing power of
occupations in the form of regular employment is still assumed, albeit in different
forms, especially within clinical settings in which psychological transformation is the
primary goal, such as psychiatric, addiction, and chronic pain units. Jackson’s
chronic pain unit study (2000) illustrates that the staff emphasizes keeping a regular
daily routine schedule. Discipline and enforced independence as a tough love
strategy, however unpleasant for the patient, were considered keys to effective
treatment of chronic pain. The patients were required to eat, attend compulsory
meetings and therapy sessions, and rest or sleep at certain times and in certain
locations. For example, meals were served only in the dining room at specific times,
medication was given according to a regular schedule and from the nursing station
only, and those who missed their pain medication would not receive any until the
next normal medication time. The staff used such externally imposed authority to
extinguish patients’ passive and manipulative behaviors which, presumably, only
increased their pain. Similarly, Frankel’s (1989) study of the addiction unit also
described the efforts of the staff to force patients to follow a regular schedule. The
staff functioned as police to enforce the patients’ dictated schedule therein
establishing the staff’s dominance.
Although the patients of physical rehabilitation have physical disabilities, the
medical specialty of rehabilitation partly originated from a belief in moral treatment
and also maintains the values of regular employment and work (Gritzer and Arluke,
1985; Penoquin, 1988). For example, active participation of patients in regular
therapy is the key to ensuring continuing insurance coverage and the efficacy of
treatment. Current Medicare regulations demand that only patients who can
participate in at least three hours of therapy on a regular basis will be reimbursed.
Therefore, it is critical that patients be able to participate in regular therapy
. Those who cannot keep up with this schedule are discharged to another
facility and lose the opportunity to receive intensive rehabilitation (Becker, 1994).
Some literature of individuals with physical disabilities describes the inescapability
of participation in rehabilitation programs, even when these patients did not feel
ready for therapy (R őding, Lindstr őm, Malm, & Öhman, 2003). Therapists
encouraged, pushed, and coerced patients to participate in therapy (Callahan, 1990),
due to the fear that if patients did not participate in the scheduled therapy sessions,
they would be discharged from the hospital or suffer a functional decline.
Medicare requires patients to be involved in at least three hours of rehabilitative therapy to
stay in rehabilitative units. Similar to what was described in studies of psychiatric, chronic pain, or
addition units, on almost every rehabilitative unit I had worked, there was a set schedule of therapies
for patients to attend. All staff members, physicians, nurses, and therapists work together to ensure
that all schedules are followed.
This view of occupation as embedded in power relations has surprisingly
received relatively little attention in literature. Despite the use of occupations as a
therapeutic means in medical institutions dating back to the beginning of modern
medical institutions and occupational therapy (to which most occupational scientists
are closely related), there are very few studies that specifically address the issue of
occupations, let alone its relations with power, in the modern clinical settings. Only
in recent years have some scholars attempted such an approach. This is particularly
alarming, as the ultimate goal for patient and staff in rehabilitation programs is to
regain patients’ abilities and to empower patients with the abilities necessary to
pursue occupations that bring meaning to their lives. This issue of occupation in
medical institutions and its relations to power are revisited in subsequent analysis
This chapter I drew upon the work in medical anthropology that explores the
culture and ideology of medicine and medical institutions, discussing it from a
critical perspective, to establish that medical practice is a cultural phenomenon and is
dynamic and multi-layered. Participants in clinical worlds—both patients and staff—
struggle to manage the balance between theoretical ideologies, most of which are
grounded in biomedicine, and the constraints of reality, like institutional codes,
insurance regulation, and the specificity of patient conditions.
Because a critical discussion on the culture of rehabilitation is still absent from
current literature, this chapter instead addresses the culture of biomedicine that
dominates rehabilitation. Features of institutional cultures and patient-staff
interaction are reviewed with a Foucaultian perspective. This framework often yields
a static and over-deterministic picture, emphasizing the absolute authority of the staff
over the patient via the use of disciplinary power. However, researchers have argued
that in modern medical institutions, power is negotiated and fluid, especially in
settings such as chronic pain units and addiction units. Here patients must assume
active roles so as to change their participation in occupations, not only in the
hospital, but also after discharge. These aforementioned institutional issues for
people with physical disabilities have received much less systematic attention than
have those with mental illnesses.
Another issue raised in this chapter is the occupational experience of patients in
medical institutions. From the available research on the history of medical
institutions and modern psychiatric facilities, scholars have suggested that the
occupational experience of patients, in a form of imposed daily routines, is not only
believed to assist in healing and recovery of patients’ physical and mental faculties,
but also quietly reinforces the power differentiation between staff and patients. It can
be said that the imposed occupations, which often fill most of patients’ time in a unit,
also organize their experiences while in the hospital.
Chapter Four Research Design
The goal of this dissertation is to explore the rehabilitation experiences of the
patients and caregivers and the local contextual factors in which their experiences
were situated. Here I describe the methods and the processes of data collection and
analysis to achieve the intended goal.
This chapter begins with a discussion of the merits of an ethnographical
approach to get to the “native point of view” and the lived experiences of the people
on the rehabilitation unit. Following this is a description of the process of data
collection, including site selection, participant selection, the primary mode of data
collection (participant observation and interview), and data analysis. The observation
included four months on a rehabilitation unit doing intensive interviews and
observing the daily routines of patients, families, and rehabilitation professionals.
Subsequent analysis was performed over the next two years, with focus on
explicating the lived experiences encoded in the vast amount of recorded data. The
issues and difficulties encountered during this process are discussed, including how
my role as an occupational therapist and a researcher on the unit influenced the
The focus of this study on the lived experiences of the participants in a clinical
world calls for an approach that privileges experience, the perspectives of the
experiencing person, and the cultural context in which the experience is situated.
Therefore, I relied on an ethnographic approach to hear the voices of the participants
and to situate their stories in the culture of a local rehabilitation world.
In the broadest sense, ethnography is the process of describing the way of life of
a group of people in a particular context from their perspectives through an extended
period of systematically observing, detailing, describing, documenting, and
analyzing their experiences and activities (Spradley & McCurdy, 1972). Ethnography
accepts as superior the knowledge verbalized by the individual who experiences a
given event over that of reporting via another’s voice. The value of this research
framework is that it aims to understand lived experiences and occupations from the
experiencing person’s perspective. Questions such as how does one make sense and
situate oneself in an unfamiliar territory and what are one’s occupational experiences
become answerable in this context.
Geertz (2000a) defines culture as “a historically transmitted pattern of meanings
embodied in symbols, a system of inherited conceptions expressed in symbolic forms
by means of which men communicate, perpetuate, and develop their knowledge
about and attitude towards life” (p. 89). With increased globalization,
communications within communities via mass media, books, and the Internet, as
well as increased awareness of human resistance to the dominant culture, have
enabled scholars, particularly from a critical perspective, to argue a new notion of
culture beyond Geertzian. This new definition states that culture should not be
confined to a particular community at given times and places (Abu-Lughod, 1997;
Ortner, 1997) and stresses the interplay of the political, economical, and material
conditions on human experience (Lamphere, Ragone, & Zavella, 1997). The focus
shifts from the definition of culture as a community to one that defines culture within
a situated context but still considers the impact of others (Ortner).
An ethnographer in quest of understanding human experiences endeavors to
contrive a “thick description” of that experience in order to understand the condition
in which an act is “produced, perceived, and interpreted” (Geertz, 2000b, p. 7). In
other words, the ethnographer engages in the construction of how people make sense
of their own and others’ experiences and the explication of the structures behind
people’s acts. Ethnographers also attempt to gain a microscopic perspective of
cultural analysis beginning with localized, situated data from individuals and
particular events that happen in human lives and extending the analysis to bring the
mega-concepts that describe the characteristics of the society into the actualities of
their daily lives. Such grounding of cultural analysis on localized, specific data is the
only way to guarantee its theoretical relevance to the “the hard surfaces of life-with
the political, economic, stratificatory realities within which men are everywhere
contained” (Geertz, p. 30). Therefore, in order to understand the lived experiences
and culture of the people in rehabilitation worlds, one must “plunge into the midst of
them,” (p. 30), and begin with the needs, emotions, acts, and desires of the
individuals in the unit.
My interests in the culture and the lived experiences of people in clinical
worlds, both of which have been influenced by the work of the researchers who
favored narrative and phenomenology in doing ethnographical exploration
(previously discussed in Chapter Introduction), have greatly influenced my
organizing and carrying out of this research. There are a number of advantages to
using an ethnographic approach with a phenomenological and narrative focus. One
advantage was that I was able to contrive a thick description of the individual
experiencing subject, situated in context, and enable interpretations of their voices to
emerge. The use of in-depth, open-ended interviewing with a focus on exploring the
concrete nuisance details of everyday events allowed me the opportunity to
emphasize the meanings these people attribute to shaping their lives. Another
advantage was that as an experienced therapist I was able to reflect on my own
values and become aware of the many implicit cultural premises that are embedded
in the work of rehabilitation (Dahlberg, Drew, & Nystrom, 2002; Spradley &
McCurdy,1972). In addition, a critical reading of the culture, ideology, and power in
illness and medical institutions (as reviewed in Chapter Three) enabled me during
my observations and analysis of the data to see the local contextual factors that
mediated the individual experiences such as the power relations of the rehabilitation
professionals and the patients and the ideology of rehabilitation therapy.
Site and Participant Selection
In the process of selecting a rehabilitation unit for my fieldwork in Taiwan,
practical consideration of whether the unit would offer enough patients that fit the
criteria, along with other pragmatic issues such as the location of the unit in relation
to my house and the desire for a personal connection, preferably at an administrative
took precedence. Kua-Ming Hospital (KMH) was selected as fitting all
criteria and also because it was one of the few hospitals in the region with
specialized rehabilitation wards. KHM was particularly suitable for this study
because it admitted mostly acute patients, one of the main criteria for the participants
in this study.
Purposive sampling was used to select participants for this study. Purposive
sampling is utilized when the researcher has a specific research question in mind and
sets out to find participants that are considered best able to provide the most
information needed for the study (Bernard, 1995). Additionally, it is particularly
suited to naturalistic inquiry, especially when the researcher intends to select a few
cases for intensive study.
In the proposal, a guideline for the recruitment of patient participants for the
purposes of this study was designed. Initially, I had hoped to recruit patient
participants with no previous rehabilitation experience and with a recent physical
disability. This criterion of no previous experience with rehabilitation proved to be
too limited when the nursing supervisors on the unit attempted their referrals.
Because of the demographic features of the patients on the unit, which consisted of
patients with neurological diseases in their fifties and sixties, the majority of the
patients on the unit had prior illnesses which had in the past rendered them, at least
temporarily, disabled or required them to go through a short period of rehabilitation.
Such personal connection was crucial in the acceptance of my research project by the
hospital and by the unit
In addition, because the unit has a highly praised intensive inpatient rehabilitation
program in the region with a long waiting list for admission, most first-timers
already had prior experiences with rehabilitation. While most of this rehabilitation
had been received within acute wards of KMH or other hospitals while awaiting
admittance to the unit, the previous rehabilitation tended to be irregular and
infrequent due to the patients’ fragile medication conditions. Therefore, this
recruitment criterion was changed to be more inclusive to include patients with no
intensive inpatient rehabilitation experience.
After this criterion was modified, the number of qualifying patients greatly
increased and the nursing supervisors on the unit were able to begin their referrals. I
chose the patient participants whom I considered to be potentially most informative
(best able to articulate their experiences and not necessarily representative of all
individuals with disabilities on the unit) (Bernard, 1995). In the end, the patients who
participated in this study could be generally characterized as those:
1. Who had acquired a physical disability for the first time.
2. Who had a neurological illness (such as stroke or spinal cord injury) as the
primary cause of physical disability.
3. Who had no prior intensive inpatient rehabilitation experience.
4. Who were able to participate in the study in the first week of admission to the
5. Who were able to communicate verbally; that is, had no established language
6. Who had at least one family member who was physically present and cared
for the patient at least a few hours a day on the unit.
At the heart of anthropological method is the practice of witnessing, which
requires an engaged immersion over time in the lived worlds of our
anthropological subjects. (Scheper-Hughs, 2001, page 318).
I spent four months in the summer of 2002 on the rehabilitation unit. I was
usually there from eight or nine in the morning to five or six on weekdays and
occasionally visited the unit at nights and on weekends. Such an extended period of
immersion in the field was required because I wanted to know as much detail as
circumstances allowed about the lives of patients and caregivers on the unit and the
patients’ experience with rehabilitation from admission to discharge. The average
first-time stay in the unit was fifty-six days – a little less than two months. Therefore,
the four-month intensive fieldwork allowed in-depth observation of several patients’
and caregivers’ lives during their entire stay.
Inviting participants to the study
Written informed consent was obtained from each study participant (see
Appendix C for Chinese and English translation of Informed Consent Form).
Participants were informed that pseudonyms would be used in this study and a few
personal details would be altered in the writing as to avoid revelation of their real
identifies, that each interview and observation may be interrupted as often as
necessary and for as long as necessary in order to meet their needs, and that they
could terminate the interview and/or their involvement in the study at any time with
no further obligation. When the participants were patients and caregivers, I advised
them that participation in the study would not affect the rehabilitative care given to
them. With the exception of a few, most participants were surprised and even
appeared embarrassed at my attempts to attain informed consent
also showed little interest in hiding their identities.
None of the participants rejected the invitation, which was done either out of
good will hoping their experience would advance understanding of human
experience or probably a desire to show their compliance with the request of the
nursing supervisor, who asked for the permission of the patient and caregivers on my
behalf. Once included in the research, none asked to withdraw, even when it
sometimes appeared that they would rather not have had me around. For example,
they were very silent and spoke very little. My closest experience to verbal rejection
was with a caregiver who told me upon my entrance to the room, “I don’t think that
he will have time to talk to you today. We are very busy with rehabilitation.”
In total I observed and/or interviewed twenty-one patient and caregiver pairs,
meaning that each had at one point been the focus of my observation and/or
participated in taped interviews. Among these twenty-one pairs, I was able to
regularly observe nine pairs (instead of three to five as originally proposed),
completed taped interviews with the patients more than twice, had individual
interviews with their caregivers, doctors, therapists, and nurses at least once, most
often twice. There were also numerous daily conversations that were recorded on the
Informed consent for participation in research is not by large a regular practice in Taiwan.
field notes as I followed them in their routines. Their stories are the main focus in the
following chapters. I came to know many other patients and caregivers whom I had
observed and with whom I had engaged in many casual conversations because of my
extensive time on the unit. However, they did not necessarily fit into the recruitment
criteria because most were admitted to the unit more than once, participated in prior
intensive inpatient rehabilitation, or had had physical disabilities for some time.
Their stories nonetheless were insightful and helpful me to understand the
rehabilitative experience of the patients and caregivers on the unit and offered a
preview of what the lives of those who were on the unit for the first time might be
The central form of data collection in this project was participant observation. It
is a research strategy wherein the researcher spends a significant period of time in a
research site with the study participants. This prolonged engagement with the people
and the setting enables the researcher to get close to people and their living
environment, and it minimizes their discomfort or uneasiness with the researcher so
that the researcher can observe and record information about their lives (Spradley,
Indeed, Bernard (1995) suggests that getting a general understanding of the
people and the culture of a social institution such as a hospital is best achieved by
participant observation. Therefore, by using participant observation as the data
collection method, I was able to observe behavior as it occurred in a naturalistic
setting and situated that particular person and setting within the larger social-
historical realm. As a result, the research procedure yielded a rich database of the
experience and the context under study.
Participant observation involves an array of methods. Those that were employed
are observation in natural settings, natural conversations, in-depth interviews, and
unobtrusive methods of documentation review (Bernard, 1995). I chose participant
observation instead of the interview research method adopted by the majority of
illness experience studies (reviewed in Chapter Two) because it helped me get at a
more comprehensive picture of the lives on the rehabilitation unit.
Although confidence can be placed in what participants said to researchers, very
little observation had been conducted to support or contest the narratives in these
studies. One cannot know with absolute certainty if this is exactly what happened.
Although what actually happened may not be as important as how one perceives
events from a meaning-centered perspective, the use of observation and other data
sources, together with the narratives of the experiencing person from an
ethnographic fieldwork, can provide a framework to situate the interpretations of the
experiencing person. Observation of events as they occur help researchers "to anchor
and offer resistance to a person's telling-it-as-it-was" (Wikan, 2000, p. 221).
I had planned specific steps of data collection and analysis in my proposal;
however, the on-going shifting and dynamic nature of the interpersonal interaction
and of the context in my fieldwork often begged for recursive thought and
improvisation within the standards of an ethnographic study. The methods I used and
the difficulties I encountered in the process of data collection and analysis are
described in the following paragraphs.
My original plan was to schedule regular observations with patients and their
caregivers when they were in therapy and in their room. However, after the first
week, I found it rather difficult to observe their activities when they were in their
own rooms. It was awkward for me to just sit there for three or four hours, observing
them while they went about their private business such as toileting, feeding, and
bathing. I also felt embarrassed when they attempted to entertain me as a guest. I did
not wish to interrupt their rest and privacy for the sake of my research. I felt uneasy
with their discomfort.
As a result, the scheduled observation time in their rooms
was greatly reduced, especially in the initial stages of getting to know each other. At
this stage, I usually spent in their room just enough time, often less than ten to fifteen
minutes, to exchange daily greetings and chat about events of the day. As time went
on, I stayed for longer when there were other significant things they wanted to share
or if we had a pre-arranged interview. Therefore, most of my observations occurred
while they were in therapy in a public space. During my regular stays on the
rehabilitation unit, at any given time, I usually had at least two patient-caregiver
pairs on my observation and interview list. Everyday we spent some time together
for at least an hour and usually more, either in their room or in the therapy clinics.
From my own experiences and discussion with a few rehabilitation staff about this issue,
this feeling may come from the unequal social status between me and the patients and caregivers.
They mostly came from working class and received minimal education. I was often introduced to
them as someone studying in United States for a doctoral degree and with more clinical experiences
and knowledge than any of the therapists on the unit. Therefore, they may feel a sense of inferiority in
The process of data collection has its up and downs. I had no problems
soliciting participation from rehabilitation staff and caregivers on the unit, but did
have problems getting patients to participate. Almost all patients who were asked
agreed without hesitation. Only a few patients stayed enthusiastic throughout the
research process, while the participation of the rest ebbed and flowed and most times
seemingly coincided with the status of their mood, which understandably fluctuated
throughout their hospitalization.
The first patient I observed and interviewed never explicitly refused but
obviously did not like to be interviewed and only gave short answers to my questions
- rarely volunteering information. I was not aware of her reluctance and took her as
someone who was not used to being verbal and reflective about her experience. This
is fairly common for people with a similar background as hers –female, in her
seventies, and with minimal education. Her caregiver told me the day before her
discharge that the patient had in private asked her for the reasons of my numerous
questions even after my explanation of the purpose and procedures of the study.
Another patient became so depressed after the first week of rehabilitation that
he did not want to talk much. Although he did not ask to terminate his participation, I
felt his reluctance and kept my distance. Every day I saw his stone face and debated
with myself whether to drop him from my research. In two weeks his mood changed
and he turned out to be one of the most informative and reflective patients I
observed. Yet another patient, for unknown reasons, was willing to be observed, but
nonetheless only responded “yes” or “no” in the first interview and later showed a
very distant attitude in our following interaction. Because of this, I felt the patient’s
unwillingness to participate and discontinued my close observation.
Getting at lived experiences through story telling
Because of my personal interests in stories and the lived experiences of the
participants with inpatient rehabilitation, I sought every opportunity that emerged
during my fieldwork to hear stories from the patients and caregivers and the details
of their experiences Examples included what had brought them to the unit, their
interaction with fellow patients and caregivers, their experiences with alternative
therapeutics, and rehabilitation therapy in the therapy clinics.
I used in-depth, semi-structured, open-ended interviews to further explore
emerging issues and meanings people attribute to their experiences (Becker, 1992;
Berg, 1998; Seidman, 1998; Spradley, 1979). Intensive interviews also facilitate a
trusting and open relationship between the researcher and the participants
(Polkinghorne & Gribbons, 1998). Seidman’s guidelines for in-depth,
phenomenological interviewing were used to structure the interviews.
In addition to interviewing patients, I also interviewed participants’ respective
families and rehabilitation teams (including physicians, nurses, occupational and
physical therapists, and psychologists) because of their extensive involvement with
the patient. I also carried out semi-structured individual interviews with them once
permission had been secured. The first interview of all patient participants took place
within one week of their admission, and subsequent interviews were scheduled at
their convenience to best accommodate their busy rehabilitation schedule.
The interviews with the rest of the participants, such as caregivers and
rehabilitation staff, were loosely scheduled and mostly geared toward one interview
at the beginning of their rehabilitation and one interview upon discharge or soon
after discharge. The participants were told that I was interested in their experiences
with rehabilitation and/or with their illnesses. These interviews not only helped me
gain their perspectives on the patients’ rehabilitative process but also helped me
understand their expectations and ideas about rehabilitation and the unit. The data
then enabled me to situate the lived experiences of patient participants in context.
The interviews were relatively non-directed, open-ended, and loosely structured
and aimed to elicit detailed descriptions of the illness and the rehabilitation
experiences. Although some guiding questions were developed and written in my
field notes prior to each interview, I did not strictly adhere to the guidelines and let
the participants choose whatever they wanted to share with me in the context of their
rehabilitation experiences. In general, the first interviews covered their illnesses and
their hospital experiences, such as how and when it occurred and its magnitude, as
well as the care they received in hospitals in the acute stage, which was usually
within the first two months after the onset of their illnesses or accidents.
In subsequent interviews, patients were encouraged to describe experiences with
rehabilitation, gains being made in therapy, treatments used to facilitate recovery,
views of the present and future, and life stories. Interviews with a focused life history
orientation allow the researcher and the participant to examine the meaning of illness
in the individual’s life or the relationship of illness to the expression, alteration, or
construction of a life history. This is a method that has been supported by research as
an important issue to understanding illness experiences (Frank, 2000; Kaufman,
The later interviews also aimed at eliciting descriptive concrete details from the
participants regarding the experiences. This brought me into their life-world and
allowed me to further understand their reflections on the meanings of these
experiences (Becker, 1992; Seidman, 1998). A narrative perspective was also useful
to solicit specific, situated events in the narrator’s lived experience because of its
“event-centered” and “experience-centered” nature (Mattingly, 1998). With the intent
to get to the lived experience from the patients’ narratives, I paid particular attention
to the events that I observed in therapy or that were spontaneously brought up during
interviews, for example, a certain exercise or a certain event, such as the frequent
unsolicited information exchange among caregivers and patients that occurred during
therapy. I also tried to let the interviewees take the lead to discuss whatever they felt
comfortable talking about (Seidman). Coupled with my observation notes, I was able
to accumulate a dense description with a great deal of specificity regarding patients’
experiences in rehabilitation.
During the interviews, field notes were written describing the interview
situation, how the respondents appeared, and how I felt about the interview. In all, I
had thirty-three 90-minute audiotapes fully recorded and transcribed. Notes were
made of pauses, hesitations, silences, and non-word vocalizations, such as mm,
laughter, comments about physical movements, or happenings in the surroundings.
After a few interviews, I found that most patient and caregiver participants did
not like to have a formal interview, i.e., to schedule a meeting to “talk,” especially
when a tape-recorder was present. They often talked less and were more reserved
about their thoughts when a microphone was pinned to their clothes. They were more
at ease to share in our almost daily brief and spontaneous casual conversations about
what was occurring in their rehabilitation or when I joined their daily chitchat with
fellow patients and caregivers in therapy. Although taped interviews were a major
source of verbal data in this study, the many unstructured conversations with the
participants described in my field notes were equally revealing and sometimes even
more poignant of their experiences.
The arrangement for one-on-one interviews with patients and caregivers posed
another difficulty. I had more success with securing one-on-one interviews with
rehabilitation staff. Despite my best efforts at the beginning of the interview to
inform the main interviewee about the focus of the interview, all interviews were
conducted in the presence of both parties, with the exception of one interview with
one lone patient and three interviews with lone caregivers.
The difficulties of securing one-on-one interviews with patients or caregivers
are multiple. First, I found it difficult to find a time to do the interview alone with the
patient or the caregiver because the caregivers usually stayed with the patients all the
time to provide personal assistance. Moreover, I did not feel comfortable asking the
caregiver to leave when I did the interviews with the patients, and the caregivers also
seemed reluctant to leave the patient alone. Therefore, the few one-on-one interviews
occurred mostly by chance. Second, in most instances when I interviewed the
patients, the caregivers usually freely interjected their comments, corrected the
patients’ responses, or sometimes took over the entire interviews even when I
explicitly stated that the interviews were for the patient. Therefore, these interviews
need to be situated in an inter-personal interaction and in an institutional context
(Kirmayer, 2000; Mishler, 1986; Reissman, 1993)
In fieldwork the relationship of the researchers and the participants plays an
important role in the research. Being an occupational therapist seemed to influence
my interaction with the participants in this study, and I desired to research further
how this may have had an effect.
Being an occupational therapist and an participant-observer at the same time
I came into this study from a background of doctoral training in occupational
science and many years of experiences practicing occupational therapy in various
settings in both the United States and Taiwan. The perspective of a comparatively
experienced occupational therapist and graduate student is important because it
provided some advantages in the process of doing this research and, at the same
time, positioned me in a particular “horizon” to understand the rehabilitative
experiences of patients and caregivers explored in this study (Dahlberg, Drew, &
Compared with the therapists on the unit who were in general several years junior than me,
I was considered as an experienced therapist.
There were advantages and disadvantages associated with being a known
occupational therapist on the unit. I purposely had not voluntarily revealed my
background in occupational therapy at the beginning of my fieldwork. However, as I
spent more time on the unit, it was difficult to keep my training a secret since the
rehabilitation staff often asked me about my research and my background. When the
interviewees learned of my previous clinical and teaching experiences as an
occupational therapist and as a university instructor, they addressed me as either
or teacher Chang. Most patients and caregivers eventually also learned about
or guessed my expertise in rehabilitation and affiliation with the rehabilitation staff.
As a recognized clinician on the unit, I soon found out that I was expected to
carry out both of the roles of observer-as-participant and participant-as-observer
during data collection.
What Narayan (1997) called “shifting identification amid a
field of interpenetrating communities and power relations” (p. 23) was a process I
went through constantly in the interaction with the people on the unit. Depending on
the context and the nature of the interaction, I was viewed sometimes as an
occupational therapist and researcher, sometimes more as a researcher than a
therapist, and at other times more as a therapist than as a researcher.
I was seen as an occupational therapist when the therapists initiated discussion
of the treatment of the patients with me and wanted to know my opinions and
“American” experiences. They often did not shy away despite the presence of the
Senior with a female pronoun ( 學姐) is a common term that is used to address someone
who enters the school (or the professional field) before oneself.
Discussion on participant-observer and observer-participant. See Germain, 1986
patients and caregivers.
When interacting with patients and caregivers, there were
many circumstances when they saw me as a therapist and sought after me for
information, such as the purpose of a particular therapeutic activity, some medical
terminology they did not understand, the nature of their diseases, or, in particular, the
In these encounters with rehabilitation staff, patients, and caregivers, I felt
obliged to share my experiences with them, in particular to the patients and
caregivers, in order to repay their hospitality and acceptance of my intrusion into
their worlds. I also felt a sense of responsibility as a therapist when they asked me
for information which I thought would assist their rehabilitation and understanding
of things. I tried to limit my responses to simple information sharing that helped
bridge the gap to a medical world and tried not to give judgment or assessment of
their rehabilitation. In terms of prognosis, almost every patient and caregiver I
became familiar with wanted a “second opinion” from me, particularly when they
had doubts. They directly asked or circumvented their questions. For example, a
patient with paraplegia asked me my opinion of adaptive equipment saying, “What
do you think of the cushion the therapist recommended?” I told him what I knew of
the pros and cons of the specific cushion. His wife then asked me: “so you think that
My seniority in occupational therapy and previous experience as a known University
teacher in occupational therapy, I believe, greatly influenced my relationship with the therapists. They
saw me as a senior and a teacher who they can share their experiences and have meaningful
discussion about their therapy. I wished for their friendship, partly because it was always good to
establish good rapport with them for my research. Therefore, although I avoided initiating treatment-
related discussion but I never refused such discussion when they brought it up. However, in the
presence of patients and caregivers, I tried to keep the discussion as general and professional as
possible. I did not wish to have the patient compare my knowledge to their therapists.’
he will really need it?” I tried to keep my answers as ambiguous as I could and say in
general what the rehabilitation staff would probably say so that I would not
jeopardize the words of their rehabilitation staff. I told them of the statistics and the
uncertainty of the healing process of which I was aware, even though my trained
instinct told me that he would very likely need the equipment for the rest of his life.
It was foreseeable that my status as a therapist would have cast a shadow on my
interaction with the patients and families because they might have perceived me on
the established dominate side of power. In one first interview I had with a caregiver,
she asked me if I were a spy for the rehabilitation staff and asked me if I would tell
on them if they told me that they had tried some alternative therapeutics that were
censored by the doctors.
Nonetheless, there are advantages to being an experienced occupational
therapist. For example, it helped me to “get into the field” in a fairly short time,
especially with the rehabilitation staff. Their acceptance and recognition of my
expertise eased my communication with them, and I believe in a significant way
facilitated the patients’ and caregivers’ acceptance of me not as an intruder but as an
observer in their private and already chaotic lives. As narratives are created between
an interviewer and interviewee, the relation between researcher and participant must
be taken into account. In addition, the background of the researcher contributed to
the production of stories must be considered when reading the analysis (Kondo, 1990;
Another advantage of being an occupational therapist was that it allowed me to
move fluidly and unobtrusively throughout the research environment to locate,
obtain, and understand more contextual data from alternative sources, such as the
thick file of patients’ medical records and the unit census. These additional data
sources served to complete and validate the data from interviews and observations. It
also eased my process of maneuvering smoothly within therapy clinics without
negatively obstructing the therapy of the participants.
The disadvantage of being considered an insider has been suggested. For
instance, limited awareness of researcher bias during data collection and analysis
could potentially affect the research (Boyatzis, 1998; Dalberg, Drew, Nystrom,
2002). Several strategies were employed throughout the study to minimize the bias.
Extensive field notes were written during and after interviews and observations.
Multiple data sources pertaining to each participant were collected, such as
observation notes, medical data, and interviews with multiple persons involved with
the care of each patient participant. This multiplicity of data sources served to
validate and complement each other (Boytzis, 1998; Dalberg, Drew, Nystrom, 2002).
In summary, data collection for this study consisted of: (a) using participant
observation techniques, (b) conducting, recording, and transcribing unstructured
interviews, (c) gathering additional and alternate data through medical records, and
(d) generating field notes for each interview and observation.
First in the analysis is the theoretical background that influenced my analysis of
the data. This is followed by a discussion of the process of data analysis.
A Brief Theoretical Background for Analytical Process
Supplemented by references on hermeneutical interpretation (Dahlberg, Drew,
Nystrom, 2002; Kvale, 1983; van Manen, 1990), Polkinghorne’s (1995, 2001)
suggestions for narrative analysis were very helpful to me in terms of making a
cognitive map in order to stay close to the lived experiences of the patients on the
rehabilitation unit. The purpose of narrative analysis is to “configure the data
elements into a story that unites and gives meaning to the data as contributors to a
goal or purpose” (1995, p. 15). The final product of the research is a coherent story
that connects events together and gives a plausible explanation as to how the story
came about. In contrast to what most qualitative researchers suggest about breaking
down the data into separate parts by coding and categorizing (Glaser and Strauss,
1967; Polkinghorne; Strauss & Corbin, 1990), Polkinghorne proposes that qualitative
analysis is a synthesis of data into “a coherent developmental account” (p. 15).
Polkinghorne suggests that Dollard’s (1935, cited in Polkinghorne, 1995, 2001)
criteria for judging a life story can be used to guide the researcher in the process of
data collection and interpretation. To summarize, the guidelines include (a)
consideration and descriptions of the contextual factors such as the culture of the
local worlds and the perspectives of the significant others, (b) the personal aspects of
the protagonist such as beliefs and desires, (c) the generation of a story as the
outcome, and (d) generation and evaluation of a plot.
The imagination and creativity of a researcher is critical to narrative
interpretation (Polkinghorne 1995, 2001). The back and forth process in a narrative
analysis is similar to a hermeneutical circle which aims at interpretation of meaning,
where the meaning of the separate parts is determined by the plot as it is anticipated.
The closer examination of the meaning of the separate parts may change the
originally anticipated meaning of the plot and this again influences the meaning of
the separate parts (Kvale, 1983). In principle, a hermeneutical explication of the data
is an infinite process and leads to a deepened understanding of the meaning; in
practice, it ends when the researcher reaches “a sensible interpretation, free of inner
(or logical) contradictions” (Kvale, p. 185). Kvale also suggests that at the end of this
phase it may be necessary to test the interpretation of the data used to support the
plot against other data on the same individual that was thrown out at earlier stages.
One characteristic of qualitative research is the cursive, inseparable process of
data collection, analysis, and writing. As suggested above, data analysis is a
continuously developing process – analysis remains in operation throughout the
writing process – and each writing brings the interpretation to another level (Kvale,
1983; Strauss & Corbin, 1990). In analyzing my field notes, I noticed many
analytical interpretations that I had made during my observation. The analysis and
writing had already begun before I had even realized it.
More intensive analysis occurred after the fieldwork was finished, tapes
transcribed, and field notes organized. Keeping the guidelines suggested by the
theoretical framework discussed above in mind, I reviewed and analyzed all
interview transcripts and field notes at least once, most often multiple times. I paid
specific attention to the personal details and contextual factors that may shed light on
the lived experiences with occupation, physical disability, and rehabilitation. The
perspectives of the patients, caregivers, and rehabilitation professionals were
juxtaposed and compared. I wanted to understand the desires and motives of the
participants and what was at stake for them (Mattingly, 1998; Kleinman, 1995). I
organized and read my notes in various ways to help with the analysis. For example,
I grouped together all of the notes on a particular patient, including interviews with
the patient, the caregivers, the rehabilitation staff, and my observation notes. Within
each patient database, I organized the notes in chronological order. I also put all the
data together and regrouped based on themes, such as therapy time, self care,
In the beginning, I was particularly interested in finding the “small moments”
that were infused with healing drama (Mattingly, 1998). Preliminary comments and
codes were written throughout the analysis on the transcripts such as therapy, pain,
feeding, caregiver burden, and information exchange. During further reading I
highlighted instances which either confirmed or conflicted with the themes identified
(Boyatzis, 1998; Strauss & Corbin, 1990).
Because of my particular interests in how patients experienced therapy and
occupational experiences on the unit, I was particularly perceptive to the data about
therapy and daily routines during my initial analysis. As a result there were a great
deal of analytical notes on the perspectives of the patients and caregivers with
rehabilitation regarding therapeutic occupations, daily routines, and the pursuits of
alternative therapeutics, which occupied the majority of their time outside of therapy
clinics. I organized the data and put all relevant coding notes under each theme. This
could be considered as the initial categorization of data analysis ((Boyatzis, 1998;
Strauss & Corbin, 1990).
However, all initial categories merely pointed to the appearance of the patient
and caregivers’ lives on the unit. I wished to gain a more in-depth appreciation of
how they perceived their occupations, how they engaged on the unit, and what was at
stake for them (Kleinman, 1995; Spradly, 1979). I also wished to know more about
how each participant shared or differed in their experiences related to the initial
categories. I needed a more individualistic approach.
I reviewed the data again by the chronology of the events, one patient
participant at a time, in order to identify the plot and individuality of each story
(Polkinghorne, 2001). As I reviewed the interviews and field notes for each
participant, I became more and more familiar with and sensitive to their style of
speaking and expressing themselves, as well as with the continuities and changes in
their interpretations of their rehabilitative experiences over time. Although there was
a great deal of similarities in the participants’ experiences, specific themes
particularly stood out among the rest, and each story seemed to have its own unique
aspects. For example, every patient had a caregiver with him or her at all times, but
the story of Chen had a particular aspect of inseparableness with his caregiver, Ms.
Huang, in structuring his daily life. For instance, every interview I scheduled with
Chen had to be “approved” by Ms. Huang. One of her subtle ways of asking me to
change the time was to imply my intrusion on Chen’s rest time. For example, the first
time I wanted to schedule an interview with Chen, he was very willing to do
“whatever time you (I, the researcher) want.” Huang overheard our conversation and
later in the same visit said that Chen needed a lot of rest time before and after
therapy because he was still very weak. Huang states, “We come back from therapy
at ten thirty and he usually takes a nap. If he does not, he will be very groggy for the
afternoon therapy. So I don’t know how he would respond to your interview (at
eleven o’clock). I don’t know if he will be awake enough for you.” I thus changed
my interview schedule right away.
Although pain and exhaustion were a common experience for all the patients
when they participated in daily therapy, with the complicity of his therapists and
caregivers, one patient in particular, Lin, went through a series of “painful and
exhaustive” physical exercises in hope of more recovery. Another patient, Chu, and
his mother pursued every alternative therapeutic other than rehabilitation that they
were able to access. However, it should be noted that Chen, Lin, and Chu all had
their painful moments, pursued alternatives other than rehabilitation, and to various
degrees, their experiences were co-experiences with their caregivers.
My exposure to critical-oriented literature also helped me to see the possible
roles of ideology, culture, and power in the individual’s experience and in each
category I had made. For example, I came to see how and why the patients and
caregivers pursued alternative therapeutics to facilitate recovery, particularly in terms
of how this pursuit was constrained by the ideology and structure of the
With each writing and discussion, new insights were brought to the data, and
propelled me to return to the data for further analysis, which resulted in a deeper
appreciation of the meanings of the narratives. I then would write a new
interpretation. The process of writing was therefore inseparable from the process of
analysis, which made my ethnographical investigation a recursive process in which I
went back and forth among analysis and writing in the hope of getting closer to the
lived experiences of the patients and caregivers on the rehabilitation unit.
Every researcher of experience written and formalized in text interprets the
phenomena from the researcher’s own horizon of understanding (Dalberg, Drew,
Nystrom, 2002). Interpretations are a natural part of telling, hearing, and retelling
stories. Narrative is representation of the experience, albeit always selective,
incomplete, and partial (Reissman, 1993). The patients and caregivers told me of
their rehabilitation narratives in words and in performance. I endeavored to stay
truthful to their experiences in my presentation of their stories. It also should be
noted here that my understanding of the literature and choices of the framework to
ground the interpretation, my experiences from years of clinical rehabilitation
practice both in America and in Taiwanese and familiarity with multiple perspectives
of Taiwanese illness and healing culture at large also bear weight in my
interpretations of the data. Although some critics of qualitative research may suggest
that the researchers’ personal perspectives and experiences bring biases and are in
general undesirable, with meticulous attention to stay true to the data during analysis,
I believe that my personal experiences and perspectives can be seen as an advantage
because it brings forth certain interpretations of the experiences that are otherwise
hidden from the participants.
Chapter Five Rehabilitation in Taiwan and the Unit
To contextualize the experiences of the patients and caregivers in the KMH
rehabilitation unit, it is important to have a preliminary understanding of the local
institutional and cultural context in which the unit is situated. Therefore, I begin this
chapter with a brief history of Taiwan’s introduction to biomedicine and
rehabilitation to highlight the newness and dominance of biomedicine and
rehabilitation in official medical institutions in Taiwan.
Second, occupations related to pursuits and implementations of alternative
therapeutics emerges as one of the most important occupational experiences of the
patients and caregivers on the unit and I am particularly interested in how pluralism
in illness explanations and health behaviors contributes to the sense-making process
of patients with physical disabilities and their caregivers and the performance of their
related occupations in a biomedical institution. Therefore, I will in the second section
of this chapter describe the current plural medical practices in Taiwan and make
references to selective readings of pluralistic medical practice in medical
anthropology. Following this is a description of the KMH rehabilitation unit with
regard to its physical layout, members, and general information about the admission
policy of the unit. Lastly, the patients and caregivers that are discussed in this
dissertation are given some background information to help situate their experiences
in the following chapters. The average rehabilitation course of the patients on the
unit is also described to highlight how the patients and caregivers manipulate the
insurance system to maximize their rehabilitation opportunities. Certain features of
Taiwanese health care insurance policy that is of particular importance to the patients
and caregivers in their experiences with rehabilitation are also included.
Introduction and Dominance of Biomedicine and Rehabilitation in Taiwan
Because of the geographical location of Taiwan as an island off China’s coast,
immigrants from China had established a system of plural illness and healing
approaches prior to biomedicine’s arrival. In last few hundred years before the
twentieth century, a few western countries have colonized Taiwan for different
periods. With this, Taiwanese people gradually came in contact with western
medicine through missionary activities and trade.
In the seventeenth century, Dutch missionaries first introduced western
medicine to Taiwanese people who had been using Traditional Chinese Medicine
(TCM) and folk therapies as their primary healing methods. Although for the next
two hundred years numerous missionaries continued to introduce and practice
western medicine in Taiwan, the influence of western medicine on local healing
practice was minimal until the beginning of the twentieth century when Japan
colonized Taiwan and used its political dominance to establish western medicine as
the only officially privileged medical practice. In the first two-thirds of the twentieth
century, the governments of imperial Japan and the following Republic of China
governments set up a systematic network of hospitals and clinics in Taiwan, and
founded several medical schools for health care workers. Privileged doctors well-
trained in biomedicine oversaw this network of medical practice. After World War II,
the fervent and direct influence of several international organizations and nations,
such as the World Health Organization and the United States, further established the
status of biomedical practice on the medical and health policies of the Taiwanese
government (Du, 1952 ﹔Cheng, 1998 ﹔ Xyi ăo Tyín Jyàn Láng, 1995). As for the
development of TCM and folk therapies, in Japan’s colonization period, the
government place severe restrictions on the practice of folk therapies and TCM in
order to discourage its use and continuation, disparaging its practice as unscientific
and against modernism
This prejudice again TCM and folk
therapies still carries today in the society, particularly in medical institutions as
evidenced by this study. (I will revisit this issue of medical pluralism and
biomedicine in medical institutions in Chapter Seven.)
Even with the establishment of hospitals and clinics around Taiwan in the first
two-thirds of the twentieth century, the majority of Taiwanese people had limited
access to these facilities due to their geological centralization in metropolitan areas
and the medical expense accrued via their use. In addition, there was a severe
shortage of medical professionals to staff the existing facilities in the first half of the
twentieth century (Cheng, 1998; Chung, 1998). However, with the increasing
number of doctors and allied health professionals graduating from medical schools
and the installation of governmental health insurance that provided coverage to the
Before Japanese occupation, there was then an estimated two thousand Traditional Chinese
Medicine doctors whom, in addition to healers who provided folk therapies, the two and half million
Taiwanese people relied on for health and illness management. After Japan occupied Taiwan in 1895,
it used strict regulations in governing and discouraging TCM’s practice. During its fifty-year
occupation, only one licensure certification was held in 1901. No more new TCM doctors were
certified after the 1901 certification for forty years. After the end of Japan’s fifty-year occupation in
1942, there were less than one hundred licensed TCM doctors on the island.
majority of Taiwanese people, the utilization of hospitals and clinics for illness
management dramatically increased in the last few decades of the twentieth century.
The Development of Rehabilitation in Taiwan
Throughout 1957 and 1958, there was an epidemic of poliomyelitis in Taiwan
affecting many, including the army post of the United States. In 1958, two American
physical therapists sponsored by the United States came to the National Taiwan
University Hospital (NTUH) to provide in-service training in physical therapy to a
selected group of nurses and to help set-up a physical therapy room with a focus on
poliomyelitis rehabilitation. Several other therapists sponsored by the World Health
Organization joined the program in the next two years. At first, the program aimed to
provide rehabilitation services for United States military personnel and their families
stationed in Taiwan. Meanwhile, the Taiwanese government sponsored a group of
physicians and nurses from NTUH for overseas advanced training in rehabilitation.
Among these trainees, one physician trained in the United States and two nurses
trained in Japan and returned to NTUH in 1960. This was the beginning of the
formation of NTUH’s own rehabilitation staff, the first rehabilitation program in
Taiwan (Chung ，1998).
A physical therapy program was formally established at NTUH in 1963. In the
same year, a new building for rehabilitation was completed to house the physical
therapy and rehabilitation department. In 1965, a twenty-bed inpatient unit was set
up for in-patient rehabilitation. Occupational therapy and speech therapy were
established in 1967. For the next twenty years, rehabilitation in Taiwan was largely
concentrated in the Taipei metropolitan area and NTU was the only accredited
university program for rehabilitation therapists. Rehabilitation in other parts of
Taiwan, such as the central and more rural southern provinces, slowly developed
until the last decade of the twentieth century. Development dramatically increased
when several other educational programs began to turn out an increasing number of
physiatrists and therapists to staff the flourishing rehabilitation facilities (Chung ，
1998). Within the last twenty (and particularly within the last ten years) of the
twentieth century, rehabilitation gained an increasing stronghold in the medical field
in Taiwan with the work of professional associations. Although the public showed an
increasing awareness of rehabilitation as a profession, many were still unable to
specifically differentiate the sub-disciplines under the umbrella of rehabilitation, and
the majority of the population was still fairly unfamiliar with rehabilitation (Hsieh &
Mao, 1994; Mao & Hsieh, 2000,).
Enduring Popularity of Pluralistic Approaches to Health and Illness
While Taiwanese national health insurance system established and perpetuated the
dominance of biomedicine in official medical institutions,
such as spiritual healing, diet regulation, TCM, acupuncture, and other folk
therapeutics remain popular among locals for health maintenance, particularly in
rural areas (Cheng, 1998; Kleinman, 1980). Therefore, it can be said that Taiwanese
I define the health care settings that are regulated by the government as legitimate and
eligible for insurance reimbursement as “official.” Although there are many other resources people
use for illness management, such as shaman, temple, and herbal medicine clinic, they are categorized
as folk therapies in this study, to differentiate from the official institutions.
lay medical culture is characterized by the co-existence of biomedicine and
alternative therapeutics in illness interpretations and the existence of corresponding
health seeking behaviors (Chang, 1983, 1989; Cheng, 1998; Chiou, 1999; Chiu,
1994; Harrell, 1991; Kleinman, 1980).
This co-practice of biomedicine and alternative therapeutics is particularly true
for people who are older, less educated, who have had less experience with
biomedicine, and for people in rural areas who have limited access to hospitals and
clinics. Shaman and self-mediation based on folk therapies and media advertisement
are often their first attempts at healing when physical abnormalities appear. Studies
by western anthropologists on the medical practice of Taiwanese people living in the
1960’s through the 1980’s characterized Taiwanese people’s medical beliefs and
practices as pluralistic (Chang, 1983, 1989; Harrell, 1991; Kleinman, 1980) 。
According to Kleinman’s studies (1980) on the health behaviors of Taiwanese
people in metropolitan areas, the origins of people play an important role in the
choice of modality used in the face of illness. People born in Taiwan (whom
presumably were deeply immersed in the pluralistic medical culture in their growing
up) tended to rely on TCM and folk therapies, such as shaman and herbal therapy.
People that recently migrated to Taiwan from China usually sought biomedicine and
acupuncture for treatment. Building on Kleinman’s (1980) illness explanatory model,
Chang (1983) reported on the health behaviors of people in a rural village in northern
Taiwan in which the majority of residents were born in Taiwan. When an illness-like
symptom occurred, the people relied on their experiences to determine the possible
etiology. Biomedicine was usually sought after if the symptom was considered to be
acute or life-threatening. TCM was considered as the specialty in the problems of a
more chronic nature, such as imbalance in body, a muscular strain, or a minor
fracture. If the symptoms appeared to be mental or psychiatric in nature, such as
being frightened by spirits, shaman or religious healing was adopted. In short, when
abnormal behaviors were noted, patients and family chose the approach for healing
based on their interpretation of the nature of the etiology. Their decision largely
depended on their previous experiences and knowledge of body and health. Western
medicine, folk therapies, and TCM were often incorporated together with no
perceived conflicts (Chang).
The studies that supported a simultaneous use of multiple therapeutics in
Taiwan were done in the years of 1960s to 1980s. The popularity of TCM in the
arena of health maintenance and chronic disease management still persist today.
Based on my observation and personal experience, people also use plural approaches
to maintain their physical health and facilitate recovery from physical illnesses,
evidence by the increasing availability of over-the-counter TCM herbal powder
extract for everyday health maintenance and many other health ailments, such as
cold, allergy, upset stomach, and regulation of menstrual periods in Chinese
pharmaceutical stores and most pharmacies that primarily sells western medication.
These themes on the multiplicity of healing approaches, particularly in rural areas
and lower socio-economic classes, and the popular practice of self-diagnoses and
treatment, carry special significance to this study because the majority of patients
and caregivers in this study were from rural areas and of the working class.
It should also be noted that these previous studies on the plural health-seeking
and health maintenance practice in Taiwan have been mostly focused on how people
dealt with psychiatric illness outside of official medical institutions, very few studies
have investigated how people deal with chronic physical illnesses such as stroke and
spinal cord injury (Chiou, 1999). In addition, these studies mostly adopted a cultural
perspective to explore beliefs, values, and the performance and a variety of
alternative therapeutics used by laypersons in their homes and communities. A
political societal perspective has also been used to explore the dominance of
biomedicine over the use and development of alternative approaches (Chang, 1983,
1989; Cheng, 1998; Cheu, 2001; Kleinman, 1980). Overall, the researchers seem to
be more interested in the elements of the lay medical culture and its activities than
how, from an individualistic perspective, people make use of the alternative
therapeutics that are available to them. In addition, there is very limited information
on how Taiwanese people utilize alternative approaches in a biomedical institution
from an individualistic perspective. For example, how the patient made sense of
his/her illness, how the patient made a choice amongst the repertoire of therapeutic
options, and how the patient’s choices were mediated by personal experiences and
institutional contexts. Such issues were rarely explored in previous studies on related
On the other hand, scholars have addressed these issues of medical pluralism
and biomedicine at some level in studies on the medical behaviors of people in other
societies, such as native Canadian and British (Garro, 1996, 2000a; Stevenson,
Britten, Barry, Bradley, & Barber, 2003). Steveson et. al in a study of the medical
consultation behaviors in Britain suggest that the individual’s choice of using
alternative medicine to deal with new medical problems in part depends on their
perceptions of the legitimacy of the treatment, available financial resources to pay
for the treatment, and the attitudes of the doctors. Patients avoided disclosing their
experiences with and intent to try alternative medicine in their medical consultations
with their doctors, perceiving that these doctors may be opposed to or not interested
in their use of alternative medicine.
The Rehabilitation Unit
The KMH rehabilitation ward is located in a metropolitan area in central
Taiwan in a medical complex within the affiliated medical university. It is the only
rehabilitation unit within a two-hour drive that specializes in acute rehabilitation.
With its one-to-one therapist-to-patient ratio, consisting of all college graduate
therapists, and many amenities in double-occupancy patient rooms, the unit has
acquired a reputation as the most sought after rehabilitation unit in central Taiwan.
There are only a few specialized rehabilitation wards in the metropolitan areas and its
vicinity. The main reason was mostly financial. Inpatient rehabilitation program was considered as a
non-profitable specialty, compared with other specialties such as surgery or internal medicine. Health
insurance reimbursement was comparatively low, rehabilitation was labor-intensive, and the average
length of stay was long.
Physical Layout of the Rehabilitation Unit
The rehabilitation program occupied part of the second to seventh floor in an
older building among the medical complex. The rehabilitation unit was spatially
divided into several sections: a rehabilitation ward from the fifth to seventh floors
and rehabilitation therapy clinics on the second, third, and fifth floors. The expanse
of patient rooms was located on three separate floors with a total of a one hundred-
bed capacity; however, because of the limited number of available nursing staff and
physiatrists, the occupancy rate was kept between seventy and eighty percent of full-
capacity. Most patient rooms were double occupancy. At every bedside there was
ample room for a chair that could be folded down into a make-shift bed for
caregivers. Each room had its own refrigerator, television, and a balcony for hanging
clothes to dry. All these amenities increased convenience for the patients and
caregivers to complete their daily tasks.
Occupational therapy was on the second floor and speech pathology and
psychology were both located on the fifth floor. The occupational therapy clinic
occupied part of the second floor and was composed of two differently sized rooms.
There was no fourth floor in this medical building, similar to the majority of hospitals in
Taiwan where no floor was named as the fourth floor. Floor plan usually goes from 1, 2, 3, skips four,
and jump right onto to 5, and so on. Because four shares the same pronunciation with “death” in
Taiwanese. Therefore, patients and families do not like to visit the fourth floor if there is any.
The majority of the hospitals in the vicinity have no inpatient rehabilitation unit. Patients
who receive rehabilitation are scattered among various units in the hospital. Patients and caregivers
credited the unit as the best for the following reasons: (a) Every patient had individual therapy
sessions for sixty minutes every weekday; whereas, in other rehabilitation facilities near this part of
Taiwan, therapists usually simultaneously co-treated two or more patients, (b) the therapists in the
program were all college graduates and experienced. In other places, therapy assistants were often the
primary providers, and (c) the amenities of patient rooms were considerably better than other
hospitals.Whereas in other facilities, four or more-occupancy rooms are more common. There is no
TV, room refrigerator, nor balcony.
The outer, bigger room housed most of the apparatuses for therapy, such as standing
tables, mirrors, a mat, and a table at the center of the room for upper extremity
training. The inner, smaller room was divided by shoulder-height cabinets into two
sections that included therapists’ desks and a therapeutic area with gadgets for splint-
making and fine motor training. During the busiest times in the clinic, a patient
occupied every chair near the table, every standing table, and all exercise
apparatuses, with caregivers standing behind or nearby.
Physical therapy had an orthopedic clinic on the second floor and a neurological
clinic for inpatient rehabilitation on the third floor, which has four variously sized
rooms. Each had big see-through windows in most rooms so that therapists could
easily observe activities in other rooms. Each room was equipped with a big mat for
mat exercises and various exercise apparatuses, such as standing frames, stationary
bikes for arm and leg exercises, pulleys for weight training, and treadmills. Similar
to Occupational Therapy clinic, in the busy time every exercise machines and mat is
occupied by patients. Because of their popularity, physical therapists had to sign their
patients up to use the apparatus.
Members of the Rehabilitation Ward
A total of fifteen nurses, with an average of three nurses per floor, provided care
for the ward, along with four attending physiatrists, two residents, and two nurse-
trained physical assistants. According to the census for the last month of my data
collection, there were twenty-three patients on the fifth floor, twenty-two patients on
the sixth floor, and thirty patients on the seventh floor, a total of seventy-five patients.
The KMH rehabilitation unit, like other rehabilitation programs elsewhere in
Taiwan, required patients to provide their own personal assistants. This was due to
the fact that the patients required an extensive amount of assistance in their daily
routines and that the limited nurse-patient ratio (one nurse to seven or eight patients)
significantly limited nurses’ availability to meet the patients’ personal care needs.
The caregivers were to be with patients twenty-four hours per day to transport
patients to appointments, buy or prepare food, take care of personal needs, and assist
other daily tasks. They were mostly family members, hired Taiwanese personal
aides, and/or foreign helpers.
Caregivers rarely left the patients’ side because the
patients often had extensive needs and were judged by their caregivers and
rehabilitation staff as too incompetent to be left alone, “I cannot leave her by herself.
She is not safe to be by herself,” a caregiver said when he complained that he
desperately needed a haircut but did not have time to do so. During my observation, I
rarely saw a patient without his or her caregivers within vision range for an extended
period of time.
Patients and caregivers usually addressed the nurses by their last time or first
name such as Ms. Ling or Ms. Chang, or as Ms. Nurse if they did not know the
nurse’s name. Therapists were addressed as Teacher (Last Name), such as Teacher
Chang. Because the therapists were considerably younger than patients (most in
Because of the labor import policy in Taiwan, there are an increasing number of families
who employ foreign helpers from southwest Asia countries to provide care for the ill family members.
Many families prefer this option than domestic personal aides because the economic cost is one third
of Taiwanese aide and the foreign helpers tend to be more compliant with the tedious and exhausting
physical aspect of care.
their late twenties or early thirties), the therapists usually called their patients
“Uncle” (a-bei) or “Grandpa” (a-koun).
Doctors were called Dr. (Last Name). How
patients and families addressed their personal aides varied as some aides were
agreeable to be addressed by first names and others preferred “Ms. (Last Name).”
Admissions to the Rehabilitation Unit
There was usually a long waiting list for admission to the rehabilitation unit.
The average time on a wait list was more than one month. However, exceptions to
this waiting-period were not unusual. A single call from the director of the hospital or
other physicians could change a person’s priority on the waiting list. Admission
priority was generally based on two criteria:
1. The time elapsed from disease onset: The psychiatrists designed this criteria
based on their understanding of the illness trajectory – the more recent the
onset of the disease, the greater the patient can benefit from rehabilitation,
therefore the higher the patient received in priority. For example, patients
with a stroke one-month ago would be admitted before those who already
had a stroke for six months. People who had suffered from their debilitating
diseases for more than one year were usually not considered for admission,
unless their medical history showed that they had very limited prior
In Taiwanese society, the way of addressing other people reveals the relationship between
the addressee and the caller. Therapist as teacher reflects the more formal, superior-to-minor teacher-
student relationship between therapists and patients specific to the context of rehabilitation. I will
discuss this aspect of therapeutic relations in details in Chapter Eight. Nurses as Ms. (Last Name) or
Ms. (First Name) suggests the more informal, non-hierarchical but still professional relationship. The
address of aides on a First-name basis indicates a slightly inferior relationship.
rehabilitation. The staff felt that these patients in particular deserved an
opportunity for rehabilitation.
2. The number of previous admissions to the ward: The beds were reserved for
patients who had never received rehabilitation on the unit, even though
many may have participated in rehabilitation in other hospitals. The priority
for admission decreased as the patient sought repeated admissions.
However, if the patients were considered to be compliant with therapy and
had made progress in previous admissions, the chance of their repeated
admission increased exponentially. Coupled with the consideration of the
one-year limit, patients at most received four admissions. Each admission
allowed thirty to sixty days of inpatient rehabilitation, depending on how
many times the patient had been previously admitted. The number of days
of admittance became shorter as the patients were repeatedly admitted.
These two criteria demonstrated the staff’s belief in the biomedical ideology
that an illness trajectory progresses on a predictable, universal, and mechanistic
principle. This “time” factor in the admission criteria comes from the idea of a
“golden period of recovery” and the early intervention approach emphasized in the
education of rehabilitation professionals. Research has shown that patients with
stroke will most likely achieve most of their recovery in the first six months and that
the involvement of patients in rehabilitation as early as possible contributes to better
prognosis. Therefore, the potential for further recovery, in terms of time elapsed from
the onset of the diseases, is an important consideration for admission.
Patients who had demonstrated high motivation and compliance with the
rehabilitation regime on the unit also received priority in their applications for
repeated admissions. Consistent with the presumption of the ability of
mind/rationality to govern body in the mind-body dichotomy rooted in biomedicine,
this criterion demonstrates the staff’s belief in the will power of the patients to
change the path of recovery. If a patient demonstrated a willingness to work hard
and made progress, the patient was admitted again and again. These criteria
effectively ensured the compliance of patients and their caregivers with the policies
of the rehabilitation if they desired to seek repeated admission.
The admission criteria were also set-up to manage the rehabilitation-seeking
behaviors of the patients and caregivers in this part of Taiwan in which patients and
caregivers seemed very reluctant to go home before a complete recovery and sought
repeated admissions to rehabilitation programs (I will return to this issue later in this
chapter). It was not uncommon that patients spent at least one year in various
inpatient rehabilitation programs before they finally went home. In general, patients
in this rehabilitation program were given, at most, two months
for their first
The two-month limit on length of stay was designed to reduce possibilities of the unit
being audited by the National Health Insurance (NIS), which was the governmental insurance
available to all citizens. NIS routinely audited the medical claims submitted by hospitals and was said
to pay particular attention to the claims when the length of stay exceeded two months, regardless of
the diagnosis. When a claim is found to be faulty, such as charges for unnecessary services, the
National Health Insurance has the right to cut all the claims sent by the hospital by a set percentage
and put the hospital on close monitoring. Therefore, most hospitals try to keep the length of stay
within the two-month limit.
admissions. The allowed length of stay decreased with repeated admissions. For the
fourth admission, patients were at most entitled to a one-month stay
The effort to seek repeated admissions reflected the patients’ and caregivers’
confidence in the efficacy of rehabilitation, their relentless pursuit in the hope of care,
and their reluctance to deal with the disease and disability at home. They preferred
staying in hospitals and continuing intensive rehabilitation for as long as possible.
Unlike their western counterparts, who were often eager to go home as soon as
possible (Doolittle, 1991), most patients and caregivers in this study were reluctant
to go home unless they had no other option. The patients and caregivers interpreted
the willingness of the physiatrists to admit them as in-patients as hope for further
recovery. In addition, while they were on the unit, there was minimal medical
expense due to the National Health insurance (see Appendix D on the financial
impact of rehabilitation on the patients and families). Moreover, the unit had plenty
of opportunities to socialize. If at home, the patients would have had to pay out-of-
pocket for the transportation between hospital and home for outpatient rehabilitation
and would have had to endure long hours of social isolation.
The limitations in the physical environment of home and community for
wheelchair maneuvers also partly contribute to the reluctance of the patients and
caregivers to seek outpatient care. Once patients went home, it often required major
efforts to help them out of the house for outpatient rehabilitation. Most homes were
The decrease in length of stay along with the repetitions of admission was set up arbitrary
by the physiatrists in the department and did not relate to the reimbursement policy of the National
too packed with furniture to allow wheelchair mobility. Most patients just stayed in
bed or were carried between the bedroom and the living room. In addition, there
were usually stairs in home that had to be climbed in order to get in and out of the
house. Once the stairs were overcome, the streets were usually not wheelchair
friendly, cramped with motorcycles parking on the sidewalk and curbs on every
block. Buses are impossible to use because there are no wheelchair lifts. Most taxi
deliberately ignored the patients’ and the caregivers’ hail for a cab when the driver
noticed a wheelchair. Most older family members did not know how to drive, and the
younger family member who did and had a car could not take time off work on a
regular basis. All these pragmatic issues make inpatient rehabilitation more desirable
than outpatient one.
The Average Rehabilitation Course of A Patient on the KMH Rehabilitation
The structure of the health care system in Taiwan played a major role in
defining the hospitalization course of the patients in this study, particularly the
reimbursement policy of the National Health Insurance. For example, most hospitals,
including the KMH rehabilitation unit, try to keep the length of stay within two
months to minimize potential for audits as discussed in Footnote eight.
The hospitalization courses of the patients in this study reflect such imposed
rules by the hospital administration. The patients often stayed in one hospital for
about two months before they were discharged to another. Discharge decisions were
made mainly based on the length of stay and not on the patients’ needs. Patients were
told of this rule either by their rehabilitation staff or other patients and caregivers.
Patients also learned that the insurance system can be manipulated for the purpose of
receiving maximal rehabilitation, such as possibility of re-admission once the
patients have left the hospital for more than two weeks.
However, the long wait list
for re-admission sometimes resulting in a wait of up to one month. For example,
after his car accident, Lin was admitted to Sha-Tung Hospital (STH) for emergency
surgery and post-operation rehabilitation. He stayed in STH for about two months
and was discharged. His doctor told him that the KMH rehabilitation program would
help him more.
He learned of the length of stay rules while admitted to KMH. He
was discharged from KMH just when he was making most significant progress in his
ability to stand and walk. Regardless of these improvement, Lin had to leave KMH.
All the rehabilitation staff urged him to come back soon after the two-week wait to
continue his therapy. Lin’s discharge was based on the arbitrary length of stay
allowed and not on his need for rehabilitation nor on his potential for recovery.
Although the focus of this study was on the experiences of those patients who
were first admitted to the rehabilitation unit, an understanding of other patients with
repetitive admission shed some light on the rehabilitation journey most patients
experienced. Most patients, at least for the first year, desired un-interrupted
After two weeks, their admissions to the same hospital was considered as a new episode
for the purpose of insurance reimbursement. Some patients with financial means sometimes decided
not to leave the hospital but to stay on a private-pay basis and returned to insurance-basis after two
My professional guess is that his discharge from STH had more to do with the imposed
two-month stay limit than his readiness for rehabilitation, because according to his description, he was
ready for rehabilitation a few weeks after the operation.
rehabilitation, partly because they were told that the first year was the “gold period”
for recovery. They achieved this continued care by self-transferring among different
hospitals with rehabilitation programs. Another rationale for seeking continued
rehabilitation, even in numerous hospitals, related to the difficulties of participating
in rehabilitation in any other place than as an inpatient in a hospital.
In Taiwan, the options for post-hospital rehabilitation are very limited compared
to what are available in the United States. In the United States, when a person with a
disability leaves the hospital and is in need of rehabilitation, there are usually many
available options on a long-term basis, such as rehabilitation hospitals, nursing
homes, and home care. This is not the case in Taiwan. Although western
rehabilitation was introduced in Taiwan in the early 1960’s and has witnessed a
steady growth and increasing recognition in Taiwanese society, rehabilitation
professionals and in-patient facilities have never been sufficient to meet the needs of
people with disabilities. There is no greater evidence of this than the long-waiting list
and long waiting period for people in need of intensive rehabilitation in KMH.
Within a two or three hour driving distance of KMH, there are only a handful of in-
patient rehabilitation programs.
The development of nursing homes is still in its infancy, and rehabilitation is
usually not available there either. Also, there is a social stigma associated with
putting family members into nursing homes (Kao & Stuifbergen, 1999; Lin, Lee,
Huang, Liu & Lin, 2000). Therefore, when a patient who relies on a wheelchair and
others’ assistance to get around is discharged from the hospital and still needs further
rehabilitation, the options are to either seek out another hospital with a rehabilitation
program that will admit the patient, as the majority of the patients did in this study,
or receive therapy on an outpatient basis. However, the environmental barrier in
Taiwan is such that when patients return to their homes, usually an apartment in a
multiple-floor building or a town house, outpatient therapy becomes a challenge of
perseverance and resourcefulness for both the patient and the caregiver. As far as the
possibility of home health, although there was an experimental project funded by the
government for provision of home rehabilitation therapy in many cities, including
where KMH is located,
none of the patients and rehabilitation staff to whom I
spoke on the KMH rehabilitation unit were aware of this project.
Given the environmental barriers to commuting between the hospitals and
homes for outpatient rehabilitation, the cramped home environment prohibiting
wheelchair movement, the social stigma to institutionalizing a family member with a
disability, and the scarce post-hospital rehabilitation opportunities, it is not surprising
that the majority of patients in this study desired to stay in the hospital, at least for
the first year after the onset of the illness, and hoped for the continuation of
rehabilitation until no hospitals would admit them. In short, the hospitalization
course of the patients on the rehabilitation unit are largely influenced by the belief in
“Golden Period for Recovery,” the desire to facilitate maximal recovery, the structure
According to my personal communication with the president of Taiwan Occupational
Therapy who oversaw the occupational therapy home care project
of the health care system, and the available options for continuing rehabilitation in
A Mix of Seasoned and Fresh Patients on the Unit
Because of the repeated admissions of patients, the patients on the ward
consisted of new and seasoned patients and their caregivers. The patients and
caregivers spent a lot of time together in rooms and in therapy clinics. Most of them
spent at least three hours each day in therapy clinics, and there were many
opportunities for them to meet and share their stories and information. This mix of
levels of patients on a range of disease progressions and the long hours in which they
were put together created an environment that supported illness story exchanges and
Because of a belief in the adaptive effect of experience sharing among patients
and caregivers, the therapists on the KMH unit also encouraged or facilitated the
acquaintance of patients and caregivers with similar conditions if the patients did not
already do so by their own initiative. One therapist said, “It is more effective for
them to accept and know what they will become and what they need to do get there
when they see other patients who have already been through this.”
There were many instances in which the seasoned patients and caregivers
offered encouragement to fellow new patients and caregivers. They provided witness
to the progress the others or themselves had made and brought hope of progress to
the new patients that themselves in time would gain with rehabilitation. New patients
may have been in a state of not wanting to converse, but there seemed to be a sense
of what Frank (1995) called a moral responsibility in seasoned patients and
caregivers to share their experiences. Most volunteered their stories with new comers
and often did so in an impromptu manner, which sometimes left the newcomers
For example, when Lin, a patient with a spinal cord injury, was first admitted to
the unit two months after a motorcycle accident, a seasoned patient who also had a
spinal cord injury greeted him in the therapy clinic. The seasoned patient made
conversation with Lin and good-heartedly offered suggestions on the use of cushions
for wheelchairs and the use of air mattresses for pressure sore prevention. Lin was
“I just came in here (to begin rehabilitation) and he came in and told me all the
stuff about the cushions. Who is he to tell me that I will never get better?”
Lin’s reaction was certainly what the therapists had expected. The presence of
another patient with a similar diagnosis and with a degree of recovery that Lin could
not accept forced Lin to confront the possibility that he would never get to the way
he were, would stay in a wheelchair, and need a cushion for skin protection. Despite
his anger, Lin actively observed other patients, particularly the ones with spinal cord
injuries like him. He shared with me many illness stories he had heard from others,
compared his experiences with them, and sometimes made decisions based on his
observations and conversations with these patients and caregivers, such as the type of
wheelchair he ordered. Many other patients and caregivers experienced similar
illness story exchanges for emotional as well as informational support (Price, 1987).
The social environment of the KMH rehabilitation unit in which the seasoned and
new patients stayed together, in a sense, facilitated such experience.
About the Patients
As I will discuss in depth the patients’ and caregivers’ experiences with
rehabilitation in the next five chapters, some background information on the patients
and caregivers that are included in the discussion will be helpful to situate their
Chen and Ms. Huang
Chen is a sixty-five year-old man. He spent his adult life promoting his religion,
Baha’i. According to his friends in the Taiwanese Baha’i association, he was like a
big brother or a father to many of them and had helped them in various stages of
their lives. His devotion and passion for his religion and friends Therefore, although
he did not have immediate families in Taiwan, his friends from the association were
his primary social support system after a stroke that completely paralyzed his left
side of his body, impairing his abilities to speak and swallow. Hs friends, upon
learning the severity of his stroke, hired a personal assistant, Ms. Huang, to care for
him immediately after he was transferred out of intensive care unit. Them visited him
daily on the unit. From my observation, he had the most visitors than any other
Even though Chen made meaningful sarcastic remarks about his therapy, such
as privately referring to a standing table in occupational therapy as “a punishment
table,” he was nonetheless compliant with therapy, doing whatever therapists asked
him to do in the clinics (although mostly resting in bed when in his room), and made
slow but steady progress.
In addition to rehabilitation, Chen also received various alternative therapies
offered or introduced by his friends, including daily chi therapy and visits to
traditional Chinese doctors. Every therapy had a specific set of rules to follow.
Chen’s personal care assistant, Ms. Huang, was very attentive to all these details to
make sure Chen followed all the rules, such as no visitors allowed during Chi
therapy. She also scrutinized Chen’s food and drinks to ensure his food was
compatible with his disposition. Because of Chen’s limited energy level, Ms. Huang
prioritized his activities to make sure his participation in rehabilitation therapy was
Chu and Mrs. Chu
Chu, in his street clothes, walking around the unit with a slight limp, was not a
typical patient one would see on the unit. He had no physical appearance that is
usually associated with head injury, such as a shaved head or scars. He was young,
only in his teens, and mobile. He was a junior student in an evening vocational
school, studying to be a mechanic. He worked as an apprentice during the days in a
steel-rope making workshop.
A van ran over Chu on a sidewalk one day when he was helping his boss with
deliveries. He suffered a severe head injury. When he was medically stable, he was
transferred to a regular ward where he suffered a stroke two days later, a
complication of the head injury. His memories of these early days were very vague
and often inaccurate. His mother, Mrs. Chu, quit her job and took on the
responsibilities of caregiver.
Mrs. Chu and Chu had tried various therapies after Chu’s accident to facilitate
his recovery. They were firm believers in alternative therapies, particularly religious
healing, acupuncture, herbal medication, and diet therapy. Chu’s mother, prepared
special foods to improve his chi flow and general constitution every day. In fact, he
denied his first opportunity to the rehabilitation unit so he could go home to pursue
the other therapies.
However, after two months at home, they sought out rehabilitation, as Chu’s
recovery seemed to have reached a plateau and they had run out of financial
resources to pay for all the alternative therapeutics. Chu’s attitude towards recovery
via rehabilitation provided in the hospital had fluctuated from skeptical to positive,
depending on his mood. He always had every confidence in his recovery, however, “I
have to get better. I have to earn money. There is no other way. There cannot be any
Kuo and Mr. Kuo
Kuo had a busy life and she considered herself to be a person who cannot stand
idle. When she was young, she took care of her parents-in-laws and raised three
children mostly by herself because her husband was away working in the cities. She
also worked on their small family farm. For the past ten years or so after her children
left home, she worked in a factory in her spare time, where she was hit by a loaded
wheelbarrow and suffered a spinal cord injury that partially paralyzed her body from
the waist down. She was then in her early sixties.
When I met her and her husband, who had retired from a factory job two years
ago and assumed the role of her caregiver after the accident, they had already gone
through the program three times, and Kuo was able to walk with a walker with Mr.
According to their narratives and my observation, the course of their forth stay
on the unit was very similar to their previous ones. They worked hard on all the
exercises taught by the therapists. The therapists and nurses called them the “model
patient” and “perfect caregiver.” Mr. Kuo learned every exercise quickly and took it
upon himself to work Kuo very hard (sometimes her therapists had to intervene and
asked Mr. Kuo to go easy on Kuo). When Kuo was unable to do some exercises, he
blamed her for not working hard enough. He would sometimes become so upset that
he walked away from Kuo for a few minutes to collect himself. It was then that Kuo,
who never openly complained of the demand of the exercises, quietly expressed her
frustration. “Normal people do not understand the suffering we disabled people
Throughout their year-long rehabilitation there was some progress, which was
often undermined by complications. Kuo had frequent urinary tract infections that
further debilitated her to the point of being unable to participate in therapy because
of high fever and general discomfort. Mr. Kuo had unstable blood pressure and had
several flare ups that needed urgent medical attention for himself. As Mr. Kuo said,
“doing this therapy is like taking two steps forward and one step back.”
Lin, His Mother, and Wife
Before a late-night motorcycle accident that brought Lin to the rehabilitation
unit, he was a successful young man. He started as an apprentice in bulletin board
construction business in his late teens, worked his way up, and owned his own
workshop by his thirties. He had been married for three years before the accident and
his favorite past-time was modifying and driving his expensive sports car. The
accident changed all that.
Nobody, except probably Lin and his family, foresaw Lin’s progress in the two
months of his rehabilitation, not even when he was half way through. When he first
came in, all four of his limbs were paralyzed as a result of several severed cervical
nerves, he could not even sit up in a wheelchair. By the end of his rehabilitation, he
could walk with a walker for at least fifty feet with the support of a therapist.
Lin had a rough time with rehabilitation for sure, particularly in the first few
weeks. He seldom went through one rehabilitation session without a lot of physical
agony, and in a sense, psychological anguish, too, because of extreme fatigue,
nausea, or pain. Still, he managed a goal in therapy every time, such as being able to
do fifty repetitions of lifting. His therapists increased the number of repetitions the
next time. He said on numerous occasions, “doing therapy is pure agony.”
From my observations, Lin’s family never let up their pressure for Lin to try his
best to bring about recovery. They asked his therapists to work him hard and always
commented on what Lin could not do. Lin’s mother was particularly bitter about
having to assume caregiving for Lin. “He was too big for me to carry. I am so sore
and tired from moving and carrying him all the time.” Lin and his family were eager
to gain any information about his prognosis from his rehabilitation staff. However,
nobody gave them definite answers, but always implied that they should prepare for
Yang and Mr. Yang
One morning after a month of long, hard work caring for her daughter and her
new-born son while making a living selling her famous home-made rice cakes at a
local market, fifty-five year old Yang woke up and found herself on the floor as she
attempted to get out of her bed. She struggled and crawled to the bedroom door and
kicked the door with her able right leg. Her husband and her son came running up
and rushed her to a local hospital. She had suffered a stroke.
Yang was transferred to a rehabilitation unit four weeks after her stroke and
began three-weeks of rehabilitation. Mr. Yang, Yang’s husband, assumed the
responsibility of caregiving 24 hours a day, never taking a day off, despite an
incident in which he fell and suffered from a mild head injury and severe leg
laceration. To reclaim the control of her left-side body, Yang worked very hard in her
daily regime of intensive rehabilitation with the assistance of Mr. Yang and her
Yang’s progress and stay on the unit was complicated by her worsening cardiac
problem. Her doctor discharged her, indicating that the intensity of the rehabilitation
program might do her heart more harm than good and asking her to take care of her
heart before seeking readmission. Yang went home and sought therapy from a
Traditional Chinese Medicine doctor, and began taking herbal medications.
According to her, her cardiac problem dramatically improved.
Fang and His Parents
Mrs. Fang was one of the parent caregivers who were complimented by many
patients and caregivers for her devoted care of her son, Fang fell down from a
scaffold in his construction work and sustained a severe head injury. He did not open
his eyes for several months. At the time of my fieldwork, his eyes were open, but he
did not seem to follow any verbal command. Mrs. Fang provided total assistance in
every aspect of his daily routines, including tube-feeding every two hours. Fang had
never left home. He and his family of a wife and two children lived with Mrs. Fang
and Mr. Fang, who were farmers with a very small and barren farm all their lives.
Mrs. Fang tried everything within her power to facilitate Fang’s healing. Even
though she was at a complete loss when it came to biomedical explanations and
interventions provided by Fang’s medical professionals, “it is too deep to
understand,” she stated, she complied with most of their recommendations, including
rehabilitation. She also hurried to every temple and spiritual healer said to be
effective in healing. She had numerous evil-expelling rituals done at the site of
accident. She spent a lot of money on herbal medication and specialty foods. In our
first interview, in which she detailed her experiences of caregiving, almost ten
months after the fateful accident and her resources near exhausted in pursuing
healing, she asked me if I knew of any therapies that she had not tried.
Liu and Mrs. Liu
Mrs. Liu was a caregiver who I considered very resourceful to new patients and
caregivers. Her husband, Liu, suffered from a severe bilateral stroke and lost control
of his whole body. Mrs. Liu had claimed that she felt no significant deficits of Liu’s
mental status and she knew how to communicate with him, although every one of his
rehabilitation professionals I spoke to felt that the stroke had severely impaired his
Mrs. Liu provided total assistance for Liu for the first ten months without any
other help, even though their marital relationship had been rocky in the past twenty
years and she was close to leaving him. She decided to hire a foreign assistant
because of a rapid decline in her own health from the extreme stress of caregiving.
Within the first month, she discharged two helpers because of unsatisfactory
performance. “She (referring to one of the assistants) slept so soundly at night. I still
had to get up to turn him (Liu) in bed every two hours. What do I need her for?”
Liu’s needs for extensive assistance and Mrs. Liu’s determination to try all she could,
even at the expense of her own health, put Mrs. Liu under such a constant stress that
she said, “doing rehabilitation is like going to hell.”
Deng and His Mother
Deng was the youngest patient in the unit. A few days before his fourth birthday,
he was knocked down by a television falling from a cabinet that caused extensive
internal abdominal bleeding which was not discovered until he suffered from a
general brain hypoxia. “The last thing he said was ‘Mama my tummy hurt,’” said his
His mother quit her manufactory job and, with the assistance of Deng’s
grandmother, cared for him. They carried him to the therapy, to the spiritual healers,
and to the traditional Chinese Medicine doctors. Deng did not make much progress.
The only sound he made was his crying, particularly in his rehabilitation therapy. It
was almost an unbearable incessant wailing, which made me tear up so many times,
thinking of my own children and Mrs. Deng’s suffering. Mrs. Deng, “in the
beginning, I cried with him. I don’t have many tears now. You can only cry so
much.” By the time of his discharge, the third time from the unit, they knew Deng
would not be readmitted to the unit because of the limited progress he had made.
Deng’s doctor had suggested a very expensive series of shots that might ease Deng’s
pathological hypertonic posture, which made almost any voluntary movement
impossible. Mrs. Deng still had hope for Deng’s recovery and was contemplating
who else she could borrow money from, “I want to give him another chance for
In this chapter, I briefly reviewed, from a historical and cultural perspective, the
medical pluralism in the Taiwanese medical culture and the dominance of
biomedicine and rehabilitation in the medical institutions in which the rehabilitative
experiences of the patients and caregivers took place. A description of the KMH
rehabilitation unit was given in the second section of this chapter, including its
physical layout, members, admission policies, average rehabilitation course of a
patient, and the unique social environment of a mixed seasoned and new patient
population. Also described was some background information on the patients and
caregivers that are discussed in this dissertation. With this understanding of the local
context in which the patients and caregivers carried on their daily lives on the unit, I
now turn in the next chapter to explore the daily routines of the patients and the
caregivers, with an emphasis on the caregivers’ perceptions, from an occupational
Chapter Six The Day of the Days
In this chapter the daily occupational patterns of the patients and caregivers on
the KMH rehabilitation unit are explored in light of Frank’s (1996) occupation-
oriented definition of adaptation. This is done in order to investigate how the patients
and caregivers adapted to life on the rehabilitation unit by “selecting and organizing
activities (or occupations) to improve life opportunities and enhance quality of life
according to the experience of individuals or groups in an ever-changing
environment” (p. 50).
The daily routine activities are described to give background information on the
patients’ and caregivers’ life on the unit. Following this, I focus on the strategies the
caregivers and patients used to prioritize their daily activities. Morning routines and
visits from friends and relatives are used as examples to illustrate their endeavor to
prioritize their tasks to keep their rehabilitation schedule. It is understandable that the
caregivers were under great stress because they mainly took charge of the patients’
daily routines. The experiential aspect of caregiving is also explored in the third
A few occupations stood out as more significant than others in the daily routine,
on account of the time and resources the patients and caregivers devoted to them:
preparation and consumption of food, organization of daily activities to keep their
therapy schedule, engagement in therapy on the therapy clinics, and pursuits of
alternative therapeutics. In the last section of the chapter, preparation and
consumption of food to facilitate recovery as an important occupation are discussed,
particularly the pragmatic issues involved with pursuits and execution of this
occupation, such as time and resources. Therapy and pursuits and engagement of
alternative therapeutics are discussed in chapters Seven to Nine.
The Activities of The Day
Due to the intensive needs of patients for assistance in almost every daily
activity, such as feeding, toileting, moving, and also due to the limited number of
nurses on the unit available to help, the unit asked that every patient obtain a
personal caregiver for all times of day. This meant that the unit only accepted
patients that were able to supply their own caregivers
(See Appendix E for who
these caregivers were in relation to the patients and how this relation reflected
changes in socioeconomic changes in Taiwan). Observation of exclusively the
patient’s routine was impossible as it was so intertwined with the caregiver’s daily
routine. The constant presence of both patient and caregiver first struck me as a
unique theme in the rehabilitation experiences of the patients and caregivers on the
unit. This unique nature of togetherness made most of the daily occupations in which
they participated co-occupations, although each patients or caregivers played a
different role or attributed a different level of significance to the activities.
It was made clear to the patients and caregivers during orientation when they
were first admitted to the unit that attendance in therapy was the priority of the day.
On weekdays, the patients and caregivers spent the majority of time in therapy
As noted in Chapter Four, the constant presence of a caregiver was one of the reasons for
the difficulties in scheduling one-to-one interviews with patients.
clinics, between two to six hours a day. The therapy clinics operated from nine to
twelve in the morning and from two to five in the afternoon. Most patients had
thirty-minute individual treatment sessions for physical therapy and occupational
therapy in the mornings and afternoons.
For example, Chen had a physical therapy session at eleven o’clock in the
morning and occupational therapy at three-thirty in the afternoon. After a few days
on the unit, he and his caregiver soon learned that most patients and caregivers, when
their stamina held, usually spent more than their scheduled thirty-minute sessions on
the clinics. Most took full advantage of the clinics by going when it opened and
working on various apparatuses until it closed. (The experiences of the patients and
caregivers regarding their therapy are further discussed in Chapters Eight and Nine.)
Chen followed suit and joined a group of patients and caregivers who congregated
outside of the therapy clinics in the mornings and afternoons waiting for the doors to
open. As a result, any free time outside of the therapy clinics occurred mostly on
weekends and sporadically on weekdays during the early morning, at noon, and
during the evening. They crammed all their other activities, such as preparing and
consuming meals, bathing, and changing, into the little time they had outside of
therapy clinics. Managing how to orchestrate daily activities to keep up the
rehabilitation schedule became very important for both the patients and caregivers,
which will be elaborated in greater detail in the second section of this chapter.
Nights on the unit were in general quiet. Evenings were a time for resting,
eating, grooming, washing, and bathing; however, even in the evenings, therapy
frequently still occupied patients’ and caregivers’ thoughts and time. The patients
who still had energy left could often be seen practicing walking up and down the hall
with the assistance of their caregivers.
Sleep disturbance was a common complaint among patients and caregivers. As
tired as they were from the intensity of therapy during the day, many patients still
found it hard to get uninterrupted sleep. Yang had frequent nightmares and was, in a
way, fearful of falling asleep. She dreamt of having another heart attack, of falling on
the ground with no person to help her up, or of drowning. Lin said that he could
never get into a comfortable position because he could not move any body part
except his shoulders and his head. By his own accounts, Chen rarely had a good
night’s sleep, although his caregiver, Ms. Huang, felt that he was so exhausted from
the day’s work, he slept very soundly and even snored a lot. The quietness of the
nights imposed a reflective mood for some. Sleep never arrived as they dwelled on
their illness and their future. Lin spent hours lying in bed at nights thinking of his
Most caregivers spoke of lack of sleep as well, frequently waking up during the
night to check on their patients. For example, many patients refused to wear diapers
at night and required assistance to toilet. Nightshift nurses said that it was not
uncommon at all for the caregivers to come to the nursing station in the middle of the
night to ask for clean sheets as they were too late in providing the patients with
assistance. Some patients needed their caregivers to turn them in bed every few
hours for pressure sore prevention.
In addition to the regular nurses who checked on their vital signs at nights, there
were various other reasons for not being able to get good quality sleep. Some were
disturbed by the noise from next-bed activities. Some patients were asked to place a
breathing mask on their face for oxygen.
However, very few were able to tolerate
the mask for more than one night.
Nights and weekends were also time to try out other methods of rehabilitation,
i.e., other than the regular therapy in the clinics. Many caregivers either voluntarily
or obediently provided leg-and-arm massage
for their patients. The massage was
said to facilitate the flow of qi and blood as well as to relax muscles.
believed that the more massage, the better the recovery, and as such it could
sometimes last hours.
The extended times outside of therapy clinics, particularly on weekends, were
also a time for rest and visiting. There were no therapies, examinations or
procedures, unless it was an emergency. It was a time for caregivers to replenish
supply, such as diapers, bed mat, and etc. Few patients took the opportunity to obtain
a pass (up to four hours according to the rules of the unit) to go visiting, see local
folk healers, or see TCM doctors. There were few visitors and most patients and
One of the attending physiatrists believed that lack of oxygen during sleep was one of the
causes for stroke. Therefore, he put almost every one of his stroke patients on oxygen masks at nights.
推拿 (twei-ná) and 按摩 (àn-mó) in Taiwanese language: both refer to manual massage on
the limbs to facilitate the flow of qi and blood.
通血路 (thong xyu ě lyù 、活 絡筋骨 (hwuó lwuò jyin gw ŭ): terms to describe the goals of
the massage described in Footnote Three. “Thong xyu ě lyù” means to de-obstruct qi and blood flow.
“Hwuó lwuò jyin gw ŭ” means to make the limbs flexible and mobile.
caregivers spent the night lounging in bed or in a chair, watching TV , chatting with
companions, and dozing in and out of sleep.
Strategies To Meet The Demands Of Rehabilitation
I now turn to the experiences of Chen, a patient who had a previous stroke, and
his hired personal aide, Ms. Huang, supplemented by the experiences of other
patients and caregivers when appropriate. I try to explicate how selecting and
organizing occupations can be seen as an adaptive process for the patients and
caregivers to their lives on the rehabilitation unit. Most important to this explication
is that the patients and caregivers together orchestrate their daily occupations in a
way that enable them to make the most out of the rehabilitation.
Chen and Ms. Huang
in general started preparations early every day. There
were many self-care tasks to attend to before going down to the clinics, such as
grooming, breakfast, washing, toileting, and so on. Chen was still fairly weak when
he came to rehabilitation, as Ms. Huang described, “You cannot imagine how weak
he was at the beginning. He could not even sit in a chair without falling. Just sitting
in a chair for 10 minutes tired him out.” He was unable to do much for himself and
would easily lose all the energy Ms. Huang was hoping to conserve for
rehabilitation. In my first interview with him in the first week of his rehabilitation, he
could barely keep his eyes open during the interview.
Chen had no family but had many good friends from his association with Bahai who
organized a committee to help manage Chen’s medical-related issues once they realized that Chen’s
recovery would take a long time. His friends hired a personal aide, Ms. Huang, to care for him the
first day after Chen was transferred out of intensive care unit. They delegated the responsibility of
caring for Chen around the clock to her.
Considering the numerous tasks, the time and energy consumed in completing
these tasks, and the priority of doing rehabilitation, Chen and Ms. Huang had to
decide who would do what and how best to accomplish these tasks in order to keep
up with the rehabilitation schedule. Ms. Huang did everything for Chen, just as many
other caregivers on the unit, even though at times Ms. Huang thought that Chen
might have wanted an opportunity to do certain tasks himself such as sponge bath in
bed because “he was very embarrassed and tried to cover himself up. He might do it
if I had given him the towel. … I did everything for him. It was just much faster and
easier.” The pragmatic issues of “faster and easier” clearly outweighed the subjective
issues of embarrassment and the possibility of increasing self-confidence via
Prioritizing time and energy for rehabilitation sometimes involved adjustment
of a life-long habit to fit into the rehabilitation schedule they were asked to keep.
Chen was known to his friends as caring little for regular daily routines, as eating
whenever he was hungry, and usually staying up very late. In his stay on the acute
ward before his transfer to the rehabilitation unit, there had been no set schedule for
him and he pretty much followed his own desires for activities and rest, just like
before his stroke. However, being on the rehabilitation unit demanded him to keep a
regular routine because he could not go to therapy whenever he felt his energy level
was high enough. His therapy schedule dictated his daily routines and he had to
modify his habits accordingly.
It usually took a few days for the patients and caregivers to find their new
routines, and to organize their activities in a way that would fit their needs. Mrs. Fan
who cared for her son Fang, who had had a severe head injury, said of her routines.
I used to get up very early and take a shower before I did everything. And I
washed him. I sweat so much washing him I had to wash myself again. … I
learned now. I still get up very early and I did everything for him first. … After
I am done (washing him), if I have time, then I wash myself. Sometimes I just
have to wait till the evening.
After a few days on the unit of trying new routines to fit into the rehabilitation
schedule, Mrs. Fang decided that she had to change her old routines in order to keep
the therapy schedule. She chose to complete her son’s care before she took care of
herself. Similar to what Ms. Huang had done for Chen, Mrs. Fang chose to do
everything for her son instead of trying to solicit the minimal involvement that her
son was capable of putting forth but would have cost him all his energy. The
caregivers took upon themselves the management of the activities outside of the
therapy clinics, as part of their caregiving responsibility, and also the actions
necessary to ensure their patients’ maximal participation in rehabilitation.
In addition to the self care tasks that needed to be done several times a day,
there were always multiple medical appointments, therapy twice a day, an
ultrasound, an X-ray, and other tasks. There was a concerted effort on the unit from
the rehabilitation health professionals to maintain the primacy of patient’s
participation in rehabilitation and, as such, everything revolved around it. For
example, if Chen needed to leave the unit for medical appointments, such as
ultrasound or dental appointment, every effort was made to schedule the time away
so that it would not conflict with his therapy schedule. The physiatrists even did their
rounds in the evenings or early in the mornings to avoid conflicts with patients’
rehabilitation schedules. If they missed Chen on their rounds, they went down to the
clinics to see him.
Because of the patients’ limited energy and limited abilities to do things for
themselves, the caregivers had to use a variety of strategies to select and organize
their activities to allow time and energy for rehabilitation therapy. The strategies I
have described so far are in provision of total assistance in self-care, change of daily
routines to fit into the rehabilitation schedule, and scheduling of other medical
appointments around rehabilitation therapy. In addition, there were a variety of other
adaptive strategies employed that necessitate knowledge of the culture in Taiwan on
illness and healing. For example, pursuits of alternative therapeutics are often sought
in order to increase a person’s qi, improve his constitution, and facilitate his
recovery. Acupuncture, herbal medication, massage, and consumption of specialty
foods are some alternative therapeutics often sought after. The responsibility of
coordinating these alternatives often lies on the shoulders of caregivers, as personal
Another activity that was sometimes prioritized out of the activities of the day,
partly based on a cultural belief of the relation between healing and emotion, was
visits from friends and relatives, who were encouraged to come to see the patients in
the evenings or on weekends if possible. This was done because “they (the patients
and caregivers) were often too busy” during the days. Aware of Chen’s limited
energy, Ms. Huang considered it very important to allow Chen enough rest and she
wanted to shield his already limited energy from, for example, the emotional ups and
downs he experienced when his friends visited. Visitations usually occurred at
numerous times of the day, particularly in the first two months following his stroke
when he was still very weak.
“When I first took care of him on the day he was transferred out of intensive
care into his room. … At least a dozen (friends) came to express their concerns.
Encourage him to work hard. … My first thought was, I then suggested them,
in the hospital, the patient, we sometimes do not, do not give him too much
pressure. … This patient, sometimes his emotion went up and down.
Sometimes his friends came. He was very happy. Particularly his blood
pressure was very high. … had difficulty to control with medication. Went up
to two hundreds …. I observed (him and the visits) for a few days. … I
suggested them that it was really good that they came to see him. But their
visits seemed to affect his routines. … I suggested them, either you all come
together … do not come throughout the day. … He even did not have the
opportunity to rest. … No rest is not OK.
Her statement reveals a Taiwanese belief on the relation between emotion and
healing and the resultant constraint on the visiting activities on the unit. Ms. Huang,
being Chen’s hired personal aide, took it upon herself to organize Chen’s daily
routines to maximize his recovery, including how and when his friends should
interact with Chen to facilitate his recovery.
They should pay care not to “give him
too much pressure” and also “all come together” in their visits to allow Chen
opportunity to rest. Ms. Huang perceived the connection between Chen’s
uncontrollable hypertension to be due to the visits because after the visits “he was
Mrs. Huang told me about two disadvantages of Chen’s friends’ frequent visits. One was
the possibility of emotional upset. The other was Qi-related: She believed that the non-purified Qi in
their bodies contaminated Chen’s Qi and undermined his recovery.
very happy.” Ms. Huang believed that Chen’s emotional excitement “went up and
down” in association with his friends’ visits and that put “too much pressure on
him,” unnecessarily taxed too much energy from him, and, ultimately, was not good
for his healing. Ms. Huang’s rationale was in line with a traditional Taiwanese belief
that excessive emotion was detrimental to health and that the ill person should avoid
any emotional ups and downs. This belief in part influenced my interaction with the
patients and caregivers as well. As an example, in our interviews, I tried to avoid
questions that would cause unnecessary emotional turmoil. Sometimes, when I
unknowingly touched upon a sensitive issue, the caregivers usually right away
interrupted the conversations with distractions.
In order to prioritize Chen’s energy, Ms. Huang acted, so to speak, as a
gatekeeper to friends’ visits, watching Chen’s energy level and in her gentle way
hinting at proper times for the visitor’s come and/or depart. She suggested to his
friends that they limit the number of visitors and coordinate their visits because
“their visits seemed to affect his routines” to the point that “he even did not have the
opportunity to rest.” I had first-hand experience with Ms. Huang as a gatekeeper for
Chen’s visits. The first day I met Chen, I tried to schedule an interview and
observation with him. Chen expressed his willingness to do interviews with me at
any time and I had scheduled an appointment for nine-thirty in the morning the next
day. Ms. Huang overhead our conversation and informed me of Chen’s occupational
therapy at eleven o’clock in the morning and appeared to wait for my response. I did
not realize at first that she hinting subtly to me that I was taking away Chen’s rest
time. She then expressed her concern about Chen’s energy level if I were to do the
interview before or after his therapy. This interference from caregivers on the behalf
of the patient with well-intended messages was by no means rare. There were
numerous times when I went into the patient’s room, even at a pre-arranged time,
and was informed by their caregivers that the patients needed rest and the interview
time needed to change. The patients, like Chen, rarely objected to the caregivers’
A Sea Of Suffering Without Boundaries
This section attempts to explore the family caregivers’ experiences of
caregiving occupation. As discussed above, all the work of completing personal care
and juggling between schedules is a tremendous amount of work for the patients and
caregivers. The caregivers were even under severe physical stress as most of the
work involved providing physical help to the patients, particularly those whose
patients were physically bigger than the caregivers themselves. They took upon
themselves the responsibility of shouldering as much work as possible in a manner
that would give their patients opportunities to participate fully in therapy. A feeling
of constant physical and mental exhaustion, “becoming ill myself,” “having to do too
much,” and “stuck here all the time” characterized the experience the caregivers
shared with me with regards to their rehabilitative experience.
Ms. Huang spoke very little of the toll on her body from the physical demand of
caregiving, probably because she was a hired personal aide and had been doing this
for many years and also because she, from my observation, was not one who
complained openly in the front of her patient. On the other hand, family caregivers –
being not used to the work and also bearing the emotional burden of a loved one’s
suffering – often had much to say. Sometimes in front of their patients and
sometimes in private, they talked about the toll of caregiving on their bodies, health,
and mental state. In particular, the elderly caregivers who cared for their spouses or
their children seemed to be more acutely affected by the process of helping their
patients to restore their health.
Mrs. Liu cared for her husband Liu who had suffered a bilateral stroke that left
him severely paralyzed. Her daily routines reflected the tremendous workload of a
caregiver to meet Liu’s complicated and extensive needs and to keep up the
rehabilitation schedule. Liu was unable to move much of his body, what the
rehabilitation professionals categorized as a patient who required “total assistance.”
Mrs. Liu did a lot of physical work to take care of Liu’s self care needs, such as
moving him in bed every two hours for pressure sore prevention, transferring him
between bed and wheelchairs several times a day for various appointments, washing,
changing and cleaning him.
Feeding Liu was a very important and time-consuming task for Mrs. Liu.
Because Liu had difficulties chewing and swallowing regular food, his feeding was
done through a feeding tube. Mrs. Liu pureed every food Liu needed and fed him via
feeding tube. There were many kinds of food Liu needed to consume, such as regular
nutrient drinks every three or four hours. In addition, Mrs. Liu juggled between
home and hospital to make specialty food that was said to be good for Liu’s recovery
and she also sought out alternative therapeutics that would aid in Liu’s recovery.
From my observation, she was a great resource to other caregivers in this area after
caring for Liu for six months. She prepared special drinks and special herbal
medication that had to be spaced out with regular food. In all, Mrs. Liu told me that
she had to feed Liu almost every two to three hours, each feeding took at least thirty
minutes and often more time to complete.
Family caregivers experienced a constant sense of physical and mental
exhaustion; particularly, the caregivers like Mrs. Liu and Mrs. Fang who cared for
her son who had had a severe head injury. Their patients had very limited movement
and required a lot of assistance in transferring them or even in moving them into
different positions in bed, which could happen many times a day. They also deemed
pursuits of alternative therapeutics and specialty food preparation and consumption
as integral to their caregiving responsibility. “I ran around places all day… having to
do so much. … I am becoming stupid myself,” said Mrs. Fang of the mental stress
she was under, that she had difficulties concentrating and thinking from “having to
do so much” and “ran [running] around all day.”
Mrs. Liu had cared for Liu by herself for over ten months and only recently
hired a foreign helper to share the task because of her own deteriorating health. She
said to me:
You know I have problems with my blood pressure too.…. I am becoming ill
myself with caring for him.… Having to do so much. … the other day I heard
someone said this recipe is good, I asked the girl [a foreign helper who was
hired to share the caregiving] to care for him and I went home and made it. It
was so much work, but I had to do it. I came back and nearly passed out on my
motorcycle. [relating an incident she saw on the clinic the other day of another
caregiver’s sudden onset of hypertension, He nauseated and vomited. He had
to be wheel chaired back to his room to rest]. Look he is still here [caring for
his family]. People say that the patient do not die but the caregiver fall [i.e., die]
first. You know, since I came here [for rehabilitation], I realized the meaning
of “the sea of suffering has no boundary.
… Doing rehabilitation is like
going into hell.”
This statement displays several aspects of the perceptions of the family
caregiver in regard to caregiving. “Having to do so much” is a perfect example of
one of them. Other examples are a sense of feeling stuck, having to put one’s own
needs on hold to care for the patient, and deteriorating health.
The caregivers were under the stress of having to be with their families at all
times and added stress of having to find ways to accomplish work that could not be
done in the hospital, such as preparation of specialty food, replenishment of supplies
such as diapers, clothes, and groceries, and obtaining herbal medication refills for
their patients. Mrs. Liu had to “run around places all day,” rushing back to the
hospital after errands, even when she had a hired helper with Liu. She did not feel
comfortable leaving Liu with her (tales abound on the unit about abusive or negligent
behaviors of hired personal aides).
Having to be with the patient at all times often came at the expense of the
caregiver’s own needs. The family caregivers, particularly the elderly spouses who
assumed the caregiver roles, were forced to put their own needs on hold, needs such
as a simple task of getting a hair cut for themselves or maintaining their own medical
“A sea of suffering with no boundary (Gw ŭ hâi w ŭ by ān)”is a quote from a Buddha sutra
that suggests there is endless suffering in human lives and this suffering will never end like a vast sea
with no boundary.
appointments. “I have not had a haircut for two months now because I cannot leave
her alone here. … She is not safe by herself. It is not safe to leave her alone,” said
one caregiver who cared for his wife. Although every week he and his wife went on
passes to go home to “help her get used to being home,” he had not had time to go to
the barber for a haircut. When they were home, he was busy with cooking, laundry,
house cleaning, et cetera.
The stress of having to “run around places all day” like juggling between the
home, the store, and the hospital and not being able to “leave the patient alone” left
the caregivers with a sense of being “stuck here all day” and without having the time
and energy to attend to their own needs. This experience was so contrary to what
ordinary people expect of the golden age, a life of “eating well and playing with
” as the old Chinese saying goes. But here they were, “stuck” with
the bad “joke that fate had played on us,” with the reality that they “cannot leave the
patient alone.” It was not surprising that such severe demands of caregiving often
took a heavy toll on the family caregivers, particularly the older ones. This stress
along with not being able to keep up their own medical appointments eventually left
many caregivers suffering from deteriorating health. Like Mrs. Liu said, “I have
problems with my blood pressure too. … I am becoming ill myself with caring for
含飴弄 孫 (Hán Yí Nwùo Sw ēn): A Chinese saying that refers to the ideal life for older
people as having a delicious candy in your month while playing with your grandchildren.
Complaints of aching backs and bones, exhaustion, and even deteriorating
health often came up in the daily chitchat among the caregivers. Exacerbations of old
minor aches and pains and ailment often turned into full-blown problems that
required medical attention. Sometimes even the medical attention that the caregivers
needed to improve their own health had to be put aside to ensure the continuity of
Mrs. Lin spoke about caring for her son with quadriplegia saying, “I had to lift
him out of his bed and put him in his wheelchair so many times a day. My body just
cannot handle it anymore. My back and my knees hurt so much.” Mrs. Lin had knee
and back problems in the past but she had not been bothered by them for many years.
However, this new imposed load on her body from caring for Lin exacerbated the
weakness of her body, bringing out old disease, to the point that she had to go home
on bed rest for many days. She was one of the few caregivers who took a break from
caregiving to recuperate. Most other caregivers did not. Mr. Lo, a caregiver who had
hypertensive problems prior to Lo’s accidents – had several exacerbations of
dangerously high blood pressure that required emergency room visits after he started
to care for Lo. One such incident was alluded to in Mrs. Liu’s statement. Mr. Lo was
the caregiver who threw up while attending Lo in therapy. He had to be wheeled
back to Lo’s room to rest but resumed his caregiving shortly after, wheeling Lo back
to the room after therapy was over.
Mr. Yang is another example of the suffering of caregivers. He had suffered a
mild head injury and severe leg laceration a few days before Yang, his wife who had
a stroke, was admitted to the unit for a second time. He assumed the care despite his
own problems:for about a week, his walking unsteady, his faltering and halting
speech revealed his problems with concentration and organization of thoughts, and
his leg laceration later became badly infected because he was not able to have his
dressing changed on a timely basis. Mrs. Chu said of her inability to take care of her
own health because she had to help her son:
I myself had so many diseases and I had to take so many medications. But now
I often forgot to take my own medication. I don’t even have time to go to the
doctors anymore. Sometimes I can feel my blood pressure going down and was
near faint.… I rode my motorcycle and suddenly everything went black for me.
I am just thankful that I managed to stay on my bike and got here.
The grueling daily routines she managed came at the price of “forgetting to take
her own medication,” with “no time to go to the doctors,” and even at times putting
herself in danger of being injured in a motor vehicle accident – the very thing that
had brought her son to the rehabilitation unit in the first place. Several family
caregivers repeated similar axioms of thankfulness for “[managing] to stay on my
bike and [get] here,” in gratitude that “nothing bad had happened to me yet”.
Constantly facing the reality of their own deteriorating health and of overstretching
their limits, family caregivers like Mrs. Liu, Mrs. Chu, and Mr. Lo realized that
being a caregiver means not only taking on the extreme stress of caregiving but also
facing their own mortality. They faced the possibility that caregiving would hasten
their ends and that they would succumb to the stress before their loved ones did.
“The patient do not die but the caregiver fall [i.e., die] first,” said Mrs. Lo.
At the acute stage of rehabilitation as observed in this study, these elderly
caregivers, while still in deep shock or mourning the losses that come with the
physical disabilities of their loved one, were forced to put their lives, usually an easy
life of retirement, on hold. The demands and expectations to learn new routines and
new technically complicated tasks, such as tube feeding, transfer techniques, and use
of exercise apparatuses and a new understanding of the regime on the therapy clinics
were overwhelming to them. This along with the culminating stresses of “feeling
stuck,” “having to do too much,” always having to put the patients’ needs above all
else, her deteriorating health, and facing her own mortality led to Mrs. Liu’s
desperate cry that “doing rehabilitation is like going into hell.” With limited hope of
recovery in the patients for which they cared, caregiving was like being plunged into
“a sea of suffering that has no boundary,” and in which one is continually treading
exhaustingly in water with no shore in sight.
I observed tremendous stress, mounting bitterness, and a sense of acquiesce to
fate as the caregivers went about their daily routines. One would imagine that these
feelings would subside as the caregivers gradually mastered the new routines and the
technically complicated tasks. One would imagine that this would beget a sense of
satisfaction of personal accomplishment. However, I rarely felt in my interaction
with them any sense of satisfaction or accomplishment. All accomplishments seemed
to be drowned by not only their own weakening health and the seemingly long road
ahead of them on account of the prognosis of their loved ones, but also by the
reasons why they became caregivers in the first place. As one caregiver responded
when another caregiver commented on the ease in which she transferred her husband
between wheelchair and mat, “Oh. I would rather be good at something else, not
Occupation to Pursue a Diet That Facilitates Healing
One of the most important occupations on the unit was the preparation and
consumption of food, as reflected by the energy and time that both patients and
caregivers, particularly the latter, voluntarily devoted to it. Every patient and
caregiver had a different way of performing this occupation. An exploration of the
pragmatic issues involving how this occupation is perceived and carried out
according to individual experience and familial constraints and resources is
The use of food to improve the general health of patients and facilitate recovery
was a common practice on the unit and a popular cultural practice in Taiwan (Tang,
2000). It was not surprising to note that any occupation involved with patients’ intake
of food was considered very important and a major responsibility of caregivers.
When talking about what to eat and when to eat, the caregivers usually did not need
an invitation to elaborate and would give a great deal of details on the diet rules they
observed, on their rationales, and on their effort in preparation and consumption of
Almost every patient and caregiver to whom I talked had a particular diet rule in
accord with Taiwanese conceptions of health and diet, which they devised from their
previous experience and from information exchanges with other patients and
caregivers. Caregivers spent a tremendous amount of time exchanging information
with others about possible specialty food to facilitate recovery. The type of food
good for the patient’s constitutions and for recovery was a topic that was often heard
in the chitchat among patients and caregivers. There seemed to be a sense of moral
responsibility when it came to sharing experiences on the use of diet to facilitate
recovery. Many times when other patients or caregivers overheard my conversation
of diet with a particular patient or caregiver, they voluntarily joined in our
conversation and gave their own opinions or suggestions of, for example, how to
prepare a special drink (vegetable juice or herbal juice) or the advantage of eating
food with a high acidity (good for stroke patients). For almost every ailment that the
patient or the caregiver suffered, there was said to be a type of specialty food to help
with the resolution of the problem. If the patient were constipated, he was given an
herbal juice. If the patient had a fever, he was encouraged to drink lots of coconut
milk, considered a cold food, which would bring down the fever.
Neither the nutrient nature of the food as protein, fat, or carbohydrate nor
calorie intake was considered in any sense. Very few people had a clear concept of
these western-oriented ideas. Most considered food in the traditional Chinese way of
“hot vs. cold,
” which follows the TCM conception of the human body in a
balancing quality of being hot and cold. When the balance is thrown off, illness
There is a strong relationship between food intake and health in the TCM assumptions of
health maintenance. Every person has a physical constitution that can be conceptualized by a
continuum of hot and cold. A person’s constitution is in a constant flux with changes of the season,
changes of the environment, or innate changes. Illness is viewed as bringing dramatic changes to a
person’s constitution. When the constitution of a person is considered in a state of cold or hot, as
when seriously sick, any food that is too hot or cold, will upset the body further.
follows. Therefore, for every disease, there is a certain imbalance of cold and hot in
one’s constitution and intake of a specific food to reset the balance helps with
recovery. When a patient suffers from a disease that is caused by being too hot, such
as a stroke, he or she should limit intake of hot food.
Most specialty foods were either prepared with the limited facilities available in
the hospital room, such as a rice cooker, prepared at home in a hurry by the
caregiver, or delivered by other family members. In fact, most patients preferred
buying or preparing their own food rather than receiving hospital meals because the
latter was more expensive, considered less tasteful, and did not meet the particular
diet requirements that each patient and caregiver adopted. For example, everyday
Mrs. Chu diligently prepared specialty food with a slow cooker in Chu’s room to
facilitate Chu’s Qi and blood flow and to strengthen his constitution in hope of a
quicker recovery. Other than homemade food, there were many vendors or small
cafeterias outside of the hospital that catered to preparation and sales of such food.
The qualities of food are not always beneficial as inappropriate intake of food
can be detrimental to one’s general health or recovery. For example, having too much
“hot” food was frequently cited to be the cause of certain diseases. Chen’s friends
thought that the lamb hot pot Chen had eaten the night he had a stroke was too “hot”
for him and partly contributed to his stroke. During the first few months after Chen’s
stroke, his blood pressure was fluctuating and was often too high, which was
considered in lay beliefs as a sign of one’s constitution becoming too hot. Ms. Huang
took it upon herself to limit any hot food, including some of Chen’s favorite fruits
and dishes. Chen’s Qi therapist limited the type of water Chen drank, because they
believed that bad Qi from the environment contaminated regular water. In order to
get rid of the bad Qi circulating in the hospital he gave Chen “blessed” water to
drink, to wash his utensils, and to cleanse his room.
Not every patient on the unit received frequent delivery of specialty food,
although the majority did. It seemed that it rarely had to do with the beliefs of the
individual patients and caregivers but with the constraints on their resources, such as
lack of family members committed to make the preparation or lack of financial
resources to provide long-term supply. For example, prior to her stroke, Yang was a
very good cook and sold homemade rice cake in her local market. She had a wealth
of knowledge in terms of the hot and cold quality of food and their relations to
health. However, I never saw her with a specialty food. Her husband provided care
for her and he did not cook, and he did not want their children to prepare and bring
homemade food because they lived some distance away (about an-hour drive). Even
with a limitation on a lack of homemade specialty food to facilitate recovery, Mr.
Yang made do with the available resources at his disposal. He bought all of their
food from outside vendors and avoided giving Yang any high calorie and fat food,
which were usually categorized as “hot,” usually made from meat and fish that were
more expensive as well. Yang once lamented, “I would really love a soup of pork. I
am becoming a vegetarian here.”
The previous chapter described the general structure of the days on the KMH
rehabilitation unit, mostly from the caregivers’ perspectives. The practical and
experiential aspects of how the caregivers managed their daily routines to adapt to
life on the rehabilitation unit were explored.
The priority of daily tasks and the allocation of responsibilities in daily routines
were made according to what the patients and caregivers considered as most
important –to preserve the patients’ time and energy for therapy so that the patient
could have maximal participation in therapy. They prepared specialty food to
increase energy and facilitate recovery. However, the time and effort demanded from
caregivers took a heavy toll on them. The constant feeling of physical and mental
exhaustion was not uncommon. The stress of having to be on the unit all the time to
provide care for their patients and “having to do so much” left them with a feeling of
being “stuck here all the time” and with their own deteriorating health.
Chapter Seven Another Chance for Miracle
While in the rehabilitation program, most patients and caregivers structured
their daily routines for the patients to have maximal participation in therapy in hope
to bring forth wished-for recovery. However, the biomedical explanation of their
diseases provided by their rehabilitation staff made little sense to them. The progress
they gained from rehabilitation was never enough to meet their expectations. In
addition, the ambiguous responses they received from rehabilitation professionals in
terms of prognosis left them to face an uncertain and bleak future. Within the
constraints of a biomedical institutional culture that failed to give plausible
explanation to their illnesses and limited hope for the future, the patients and
caregivers were faced with the questions of “why me” and “what else can I do?”
In a search for a hope that had been steadfastly denied by their medical
professionals, the pursuit of alternative therapies was a common practice on the unit.
Anecdotes of the miraculous effects of certain remedies for certain problems were
circulated among patients and caregivers. Although their personal experiences with
the effectiveness of alternative therapies might not prove effective, they were ready
for something else to produce the miracle they longed for.
Many patients and caregivers on the unit had a stock of Taiwanese cultural
knowledge that provided them with alternative therapeutics that were believed to
have the potential to bring forth the recovery they had hoped for. They sought and
tried out alternative therapeutics to find explanations for their sufferings as well as
more and speedier recovery. It seemed to offer them opportunities to understand
what was going on and to change the current course of their sufferings, in the midst
of their losing control of their lives to fate, luck and biomedicine. However, their
pursuits of recovery brought dilemmas and obstacles, such as limited resources,
questions of the effectiveness of the therapeutics, and the constraints of staying in an
institutional environment. Their endeavors in pursuit of alternative therapeutics and
how these approaches helped them made sense of their experiences and take control
of their healing are the focus of this chapter. In addition, I will also discuss how the
rehabilitation unit as a biomedical institution constrained the choice an engagement
of the patients’ and caregivers’ pursuits of alternative therapeutics.
Making Sense of What Happened
I first discuss how patients and caregivers perceived the biomedical
interpretations of their illnesses provided by the medical professionals as they
attempted to understand what and why happened. Many patients and caregivers also
relied on alternative frameworks of illness and health available in Taiwan to make
sense of their illness experiences via a narrative mode. Their narrative interpretations
of illness reveal the perceived multiple illness causes and the consequent engagement
of various healing alternative approaches available in Taiwanese medical culture to
Uncertainty in the Cause of Disease and Future from a Biomedical Perspective
Mrs. Lo talked about her son who fell from 2nd floor during work and suffered
a severe head injury: (every health professional) did not dare to tell you when
(he) will recover. … I asked him (the doctor). The first time he (Lo) did not
wake up. I asked him in ICU. He said, “I dared not tell you when he will
recover. It is probably a month. Two months. Three months. … If he did not
wake up in three months. Probably six months. … If not wake up in six months,
then it is a year. When will he wake up, nobody knows. … it is very slow.” He
said that it is very slow. Very slow to get better. I dared not say when he will
wake up. … I don’t know what is going on in his brain. I don’t know whether
he should have his bone put back. Some doctors said this, some said that. I
don’t know. How did he (the doctors) assess, I don’t know, to tell the severity
(of the injury). … The doctor said that if I want it put back, he will do it. But
how should I know? … it is fate that it happened to us. … I owed them (her
sons) too much in my previous life. … I am fated to carry the burden of my
sons. ... This life I cannot work hard enough to raise my children. (cried)”
There was a tremendous sense of uncertainty and a feeling of lack of
understanding when the caregivers and the patients talked of the diseases that
brought chaos to their lives and their future, particularly the future that was offered
from a biomedical perspective. “Nobody knows” and “I don’t know” were often
mentioned when they tried to understand the causes and progression of their
diseases. The patients and caregivers looked to the medical professionals for
explanations, but they were often given ambiguous and sometimes even conflicting
answers. “Some said this, some said that,” or often the answer was too vague to
understand. The doctors “dared not” tell them the prognosis, but painted an equally
bleak future with “very slow” recovery, “two months, three months, … six months
… a year … no body knows.” Or, they felt that the medical description was too much
for their comprehension. “How should I know … it is too deep to know.”
Therefore, it was not surprising then, that the biomedical talk (Gubrium &
Buckholdt, 1982) that dominated the rehabilitation professionals’ verbal and written
discourses did not often appear in the narratives of the patients and caregivers when
they talked about what happened, some biomedical talk was completely omitted and
some mentioned in a very transient and fleeting manner.
The repeated attempts of the patients and caregivers to ask their rehabilitation
professionals what the possible prognoses for the patients reflected their desires (and
their letdowns as well) to get a specific response.
From the perspectives of the
rehabilitation staff, they deliberately avoided specifics in prognosis projection to
avoid false hope.
Lin’s therapist talked about Lin’s future in our interview: “His recovery is his
getting up and walking, getting up walking. But then I did not tell him (he
could do that). Because I felt that he is still in spinal shock. The effectiveness
of therapy is still, I will not say too much to him. … I don’t know (of his
prognosis). … So I did not dare to say much to him. We will see. We will wait
for a while. … (I) will not give him too much (answers) about his future. (I)
will listen to him. But will not give him any answer. … There is no way that I
will give him too much hope. Let him feel that he can rush forward. What if he
could not reach the goal, then the frustration and the, I feel that that is not
what we wanted, because that is too big a blow. … (so when he said when he
will walk again). I did not speak.”
Although Lin’s therapist did not tell Lin that he would never walk but his
silence – “I did not tell him (his goal of walking was unrealistic),” “will not give him
any answer,” “I did not speak” in response to his assertion of his walking again –
along with his action and treatment plan all pointed to a bleak future of Lin’s need of
long term assistance. In the first week of Lin’ s rehabilitation, I had observed Lin and
his mother trying to get some answers either directly or indirectly from his
rehabilitation professionals about his prognosis. The responses he received were
almost uniformly evasive and uncertain, just like his physical therapist had described
above. “We will see” was frequently quoted when talking of a future or prognosis.
Almost every patient who came to know my medical background of my opinions also
asked me of my opinions of their prognosis. My responses to the question, similar to the responses
they received from the biomedical professionals, were deliberately vague.
Lin used the analogy of students working hard on an examination to get a good
score as his working hard on recovery to describe his frustration with not getting a
straight answer from his therapists. Although from the therapists’ perspectives, such
deliberate evasive and ambiguous answers were well intentioned, given in order to
avoid unwanted frustration if the wished-for recovery did not come true in the end.
Lin’s interpretation was however, different. He saw it as giving him no hope.
They (the therapists) do not tell (me of a specific prognosis), they only said to
me, I teach you and you work hard, it is God who will let you walk or not. …
When you take an exam, there is no knowing what score you can get. Y ou
cannot know. But at least (if I work hard) you will give me 50 out of 100. But
the teachers gave me zero. They gave me zero! ”
The therapist: “there is no way that I will give him too much hope. … What if
he could not reach the goal, then the frustration and the, I feel that that is not
what we wanted, because that is too big a blow. ”
The therapists so tediously and deliberately avoided raising any unrealistic
expectations for fear that they would be disappointed. However, such effort was
perceived by the patients as giving no hope at all, a score of Zero for hard work. It
was not only the silence and ambiguity from the therapist in response to the question
of future but also his hints and suggestions to prepare for long-term caregiving that
specifically revealed their expectation of the future for the patients and caregivers.
Although avoiding to give more definite responses regarding to Lin’s prognosis, the
therapists talked to Lin and his mother about home modification, hire of a foreign
helper to share the caregiving burden, air mattress and wheelchair cushion for
pressure sore prevention, et cetera. In Lin’s first week of rehabilitation, the treatment
focus was on Mrs. Lin, her ability to transfer Lin by herself, as he said to Mrs. Lin:
“If you cannot transfer him right now, how will you transfer (him) after you
get home? Are you going to let him lying in bed all the time?”
Mrs. Lo also described similar experiences with the medical professionals who
hinted at the likely grim prognosis of her son. According to Mrs. Lo, when she was
learning how to tube-feed her son, she was very anxious and asked the nurses’ help
several times. She stopped asking for her help when one day she overheard a talk
between the nursing supervisor and the student nurse who was in charge of Lo’s care
and had responded to her requests of help.
“The nurse supervisor said to the student nurse. Stopping doing tube-feeding
for the family. If you do not teach the family (Lo’s parents) to do tube-feeding,
are you going to do it forever for them? Who do they ask for help when you
The significance of these hints and treatment plans, at least to the caregiver,
however difficult to accept, was clear: that the caregiving was for the long haul
because the wished-for complete recovery would not come, at least in the foreseeable
future, so they had to learn “the basics” of caregiving, such as transfer and tube-
feeding. It was not only the patient who was doing rehabilitation but also the family
had “basics” to learn to take on the caregiving responsibility as well. Even though
the medical professionals tried to avoid giving specific verbal answers regards
prognosis, by their silence and firmly insisting that the family caregivers learn the
techniques and prepare for long-term caregiving because “no one will help you once
he returns home,” they told the patients and caregivers that there was not much hope.
In sum, it seems that, in addition to the uncertain nature of the illness trajectory
inherent in the diseases the patients experienced on the unit, the uncertainty and
confusion the patients and caregivers felt about their illnesses were in a large part
related to the deliberate ambiguity imposed upon their communication with their
rehabilitation professionals by the latter as well as the inconsistency in the verbal
messages and the action the latter took. This might contribute to the feelings
expressed by the patients and caregivers that the medical-related knowledge was out
of their comprehension. There was a sense of uncertainty, confusion, and
powerlessness when they attempted to understand their illnesses from a biomedical
Remembering What Happened?
When patients and caregivers talked about their diseases or accidents that
brought them to the rehabilitation unit, they seemed to ponder on the meaning of the
event. They dwelt on the smallest details of the tasks they participated in, prior to the
disease or the actual accident, sometimes even when those moments were mostly a
blur to them, like the time they spent in intensive care or the accident itself. Their
memories were sketchy. Nonetheless, they concentrated on any details they could
remember, even making things up so that the experience made sense to them. The
transcripts of these early moments were full of my repeated efforts in clarifying the
details. Dahlberg, Drew, and Nystrom (2002) suggest that “the way to understand
occurs … is the coming-into-language of the thing itself” (p. 90). The language used
and its structure is assumed to reveal the experience of the patients. Therefore, the
patients’ efforts in telling what happened and the often un-intelligible, disjointed,
halting statements of their earliest experiences with the accidents or disease seemed
to tell the significance of those moments to them (however vague hazy that may be),
their desire to make sense of what happened, and their experience of the onset as
fragmented, confusing, and incoherent.
Chu, a seventeen-year-old young man, suffered a head injury as a result of a
motor vehicle accident three months before he came to KMH. In my first interview
with him, Chu, together with the help of his mother, spent the first half hour
rambling through what they thought brought him to the rehabilitation unit. Chu
ruminated on the dinner party that he went to prior to the accident, how he did not
want to go, but since it was his boss’s party and he had to go. He talked about the
dishes he ate and the dishes he saved in a bag to bring home to his mother. After the
party, he returned to his boss’s workshop to help clean up, probably because of the
food he had, he had a stomachache and he had to go to use the restroom. While
getting ready to do toileting, he was called out to help with a delivery. “I remember I
had my pants down and squatted, just ready to go and then I heard my name.” That
was his last concrete and coherent memory before the accident. And he made up
details of what he thought happened afterwards. He immediately got dressed, hurried
out, and waited at the sidewalk to help with a delivery. A moment later, a van ran
In describing his accidents, although trying to tell the details, Chu’s words were
often uncertain and vague, and sometimes even inaccurate (corrected or
supplemented by his mother on the spot or later). I had to repeatedly ask for
clarifications. He confused his memories of this car accident with another previous
motor accident. He said things that his mother silently shook her head in
disagreement (and later told me that Chu made it up). Some of these details,
particularly what happened immediately before the accident and what happened in
emergency room and in intensive care unit, Chu talked as if he remembered them but
later on Mrs. Chu told me that Chu did not remember much of them. He had heard it
told by others so many times that he memorized them as if he really remembered
The details of the preceding events that led to his accident, which did not appear
relevant to me at first, seemed to be his attempts to make some meaning out of the
chaos he experienced with his illness. He often injected his sentences with “that is
right, that is it, “that is right, that is what happened,” as if to reassure himself that the
meaning he attributed to the experience was correct. After the accident, with so much
that was out of his control and he could not make sense of, such as his headache and
frequent upset stomach, he had to re-assure himself that he could make sense of what
had happened to him, to figure out what was “right”, even sometimes he had to
“make up” things. As if within his mind, he needed to reconstruct the motor accident
and his early hospitalization, which he only had a vague idea, so his current suffering
made sense to him.
Chu: “If I had eaten all the food and not saved it for later (then will have a bad
diarrhea) … If I had eaten more and had squatted down (for toileting)
(laugh) … and I would not be here today. … That means that I did not in the
past do enough good deeds to accumulate merits. I did not do good deeds to
Chu strove to figure out why it was him who had a stroke complication after a
head injury but not others who had head injuries. Although he seemed to accept the
biomedical interpretation of a stroke as a complication of his head injury and adopted
treatment suggested by his doctors, such as hyper-oxygen therapy and rehabilitation,
there was a sense of uncertainty and confusion when we discussed his illness from a
biomedical perspective. The biomedical explanation made little sense to him and his
Alternative Interpretations of the Illnesses
Unlike biomedicine which insists on an absolute interpretation of disease and
focuses only on cells and organs but leaves patients and caregivers with confusion
and questions of “why me?” and the future, narrative interpretations of illness and its
causation from alternative frameworks available in Taiwanese culture enables them
to re-examine their lives, to connect their illness to their life story, and to make sense
of the experiences (Kleinman, 1980; 1988). It seemed to offer them opportunities, in
the midst of losing control to one’s fate, luck and biomedicine, to understand what
was going on, and to change the current course of their experience. “If people told
me (some alternatives that are effective), there I went.”
Some suggested that their current experiences with illness or caregiving was
caused by evil spirits, some by imbalance in diet, some by fate or by bad luck. One
interpretation stood up among the rest as the most prominent one – a spiritual-
oriented interpretation of their illness. I had never explicitly asked patients and
caregivers for a spiritual interpretation of their diseases. It was always spontaneously
brought up as they described their experiences. In my first interview with Chu and
his mother, Mrs. Chu, when we talked about Chu’s needs for rehabilitation, the
biomedical explanation of a traumatic head injury after MV A, as noted on chart, was
not mentioned in their narratives. In addition to the payback for past sins mentioned
above, Chu also offered other possibilities.
Chu: “When my mom told me that he (the shaman) said I ran into evil spirits
when I went to all these places (his previous favorite haunts such as a local
park). Probably he was right. … I was surprised that he knew because I never
told anybody. … I loved fishing. … I killed too many live. … I loved fun,
loved too much. … When I went fishing, I put firecrackers in the fish. And I
lighted it. And it boomed. And it trembled. … it was a lot of fun then.”
Mrs. Chu described Chu’s incident with an ICU nurse when he tried to read her
name by grabbing her name tag that was rested on her breasts: “He probably
touched her breasts and she slapped his hand, just once. The next day he could
not move that hand. Very strange. … He was probably frightened out of his
soul or something else. I don’t know. But he could not move that hand the
Chu: “I think I am taking the punishment (for past sins) for my boss. He had
families to take care and I don’t. I only drag down my mother with me.”
Sickness is “the process through which worrisome behavioral and biological
signs, particularly ones originating in disease, are given socially recognizable
meanings” (Young, 1982, p. 270). First, Chu and Mrs. Chu believed that disruptions
in life, particularly un-expected sufferings from sudden diseases, could not be
adequately explained by mechanistic principles. They relied heavily on the
alternative frameworks of illness and health available in Taiwanese culture to make
sense of their experiences. To account for the motor accident event that damaged his
brain and the subsequent medical complications of a stroke, which did not happen to
every one with head injury, Chu and Mrs. Chu proposed various interpretations.
First, it was connected with a supernatural relationship that was incurred by
Chu’s past behaviors. It was a “payback (rewards for good deeds and punishment for
bad deeds)” for various sins that Chu had committed, such as visiting places that evil
spirits dwelt, indulging in fun without consideration for other live forms
(unnecessarily killing fish for fun). Secondly, disease is not merely a pathological
change within Chu’s body, as Chu’s rehabilitation professionals had suggested and
practiced in the bodily-centered physical training they prescribed. Illness was also
related to the intricate inter-personal relationship of the patient and others, such as a
conflict (a frightful accident with a nurse that frightened Chu’s spirits out of his
body), a quality of the relations between Chu’s boss and him that resulted in his
having the accident while running errands for his boss.
It was also Mrs. Chu’s fate
to provide caregiving that doomed Chu to have the car accident. Lastly, there were
some bodily pathological changes that cannot be cured by biomedicine, such as
disruption in Qi and blood flow and can only be improved with acupuncture,
specialty food, and herbal medication.
Many other patients shared similar spiritual-oriented interpretations of their
illnesses. Mrs. Lo thought that Lo’s head injury was a result of sin (for thinking of
killing lives – an abortion) and fate.
Fate do tricks on us. This is it. My child fell. … Right before he fell, she (his
wife) was pregnant. They wanted an abortion and I would not let her. … If
A Taiwanese folk belief: people are related by the quality of relationship between each
other that has been accumulated throughout past lives. What Chu implied was that he believed he
must have owned his boss some debts in this life and past lives, that was why he had this accident
while running errands for him. It was his fate (and his mother’s as well) to take this bad luck instead
of his boss’s.
they had not thought about abortion, this thing would not have happened. …
(Fate) Doing tricks on us. … We the old people have to suffer. This is it. If
they had not said that, this would not have happened. If only there could have
been an addition (the baby), in exchange for this child (Lo) to wake up. .. It is
fate that it happened to us. … I owed them (the sons) too much in my previous
life. … I am fated to carry the burden of my sons. ... This life I cannot work
hard enough to raise my children.
Illness and burden of caregiving are “tricks” played by fate that she cannot
escape, that she would never be able to support their children no matter how hard she
worked. Fate, spirit possession, payback for past sins, such multiplicity of
interpretations to make sense of why the illnesses happened to them noted in Chu
and Lo’s narratives were very common in the narratives of the patients and
caregivers on the unit when they recounted their experiences (Kleinman, 1980). Chu
and Lo’s are examples of spiritual and fate-oriented reasoning. There was also other
reasoning that was believed to be the causes of their illnesses, such as imbalance in
physical constitution and stress on the body and mind. Chen’s friend believed that
Chen’s stroke, in addition to his poor compliance with medication to control his
blood pressure, was brought upon by a lamb stew he shared with his friends in the
previous meal, which was popularly believed to be a very nutritious “hot” food that
brings up one’s metabolism and blood pressure. Yang felt that her stroke was related
to her exhaustion from caring for her daughter who just gave birth and to her eating
too much “hot” food that she made for her daughter. She also regretted that she had
not provided care for her father-in-law when he had a stroke. She thought that was
why she had a stroke as a punishment for not being a good daughter-in-law.
“Culturally available knowledge about illness and its causation … as a resource
that may guide the interpretation and reconstruction of past experience” (Garro,
2000a, p. 70-71). The alternative philosophies of illness and health available in
Taiwan provided patients and caregivers with frameworks to reflect on the past,
gives the past a new meaning (Brunner, 1996). The fun Chu had with fishing and
visiting strange places was not fun any more but instead was acts of doing bad deeds
and attracting evil spirits for which he was punished. These events, as they occurred,
had not such a potency of meaning until the occurrence of the illness made it the
beginning of an illness narrative, helped the question of what and why a bit more
understandable. Through reflection, the meanings associated with the events were
transformed. For each illness cause, there was corresponding therapeutic that aimed
to remedy the cause and facilitate recovery. With such multiplicity in the
interpretations of the causes of the diseases, it was not surprising that there was a
widespread adoption of alternative therapeutics on the unit.
Another Chance for a Miracle
The variety of therapeutics the patients and caregivers engaged in reflects the
multiplicity of the illness explanations they attributed to their diseases when they
talked about their experiences (Kleinman, 1980). Among all the alternative
therapeutics that the patients and caregivers had reported using, spiritual healing,
herbal medication, and diet management were the most popular ones. Although
researchers have documented spiritual healing, traditional Chinese medicine (TCM),
and diet management as popular health-seeking behaviors in Taiwan (Chiou, 1999;
Kleinman, 1980; Lo, 2002 ), very few had discussed how patients and caregivers
pursued these alternatives while staying in a biomedical institution and its
significance to these patients with sudden physical disabilities.
“To Treat a Dead Horse Like a Live Horse: ” Spiritual-oriented Healing Approach
Considering the prevalence of spiritual-based illness interpretations offered by
the patients and caregivers on the unit, it was not surprising that every patient and
caregiver I talked to had tried various means of spiritual healing to facilitate their
recovery during different stages of their illnesses. When, how, and what they pursued
seemed to be related to the perceived causes of their illnesses, their resourcefulness,
and beliefs in spiritual healing.
For those patients and caregivers who believed in the spiritual causes of their
illnesses, particularly those whose illnesses that were brought on by accidents, they
often turned to spiritual healing to facilitate their recovery. No one knew why the
accident happened to that person, not the others, such as Chu and Lo, whose head
injuries were results of a motor vehicle accident, or a fall from second-floor window
Early after Chu's injury, he was still medically unable to leave the hospital. On
behalf of Chu, Chu’s mother, Mrs. Chu, and his sister brought his clothes to a
shaman with a reputation for healing
. The shaman claimed Chu’s disease came
from “being frightened” by evil spirits and named several places that Chu had visited
It is a common practice in spiritual healing ceremonies that when the afflicted person
cannot be present, his clothes can be used on behalf of the person. This is the means that I heard most
when people pursued spiritual healing on behalf of their patients on the unit because they were unable
to get the patients to the ceremonies in person.
in the past that were the sources of the evil spirits. This explanation partly validated
Mrs. Chu’s belief that Chen was “frightened out of his soul” by a slap on hand by
one of the ICU nurses.
Mrs. Chu: She (the nurse) slapped his hand. The next day he could not move
that hand. … Probably he was frightened (out of his soul) or something. It
happens. … I went to the doctor and ask them, my child was slapped by your
nurse and the next day he could not move his hand. What do you think
happened? … (In the first trip to a shaman) That master said, you bring, if you
can bring that person over, this child has been very badly frightened. That is
why he could not move his arm and leg. …We feel very strange. We did not
tell him anything. We only told him (the master) his (Chu’s) birthday and
name. That is it. … So we brought him over and the master chanted some
verses for him. His left arm, he could raise his left arm. … We were half
skeptical and half believing (at first), but we saw that he could really move.
And after his (the master) treatment, his whole body is more, did not said that
this hurts and that sores anymore. … That master (in our first visit) said. This
child has been to this place and that place. We came back and told him. Said
that the master said you have been to this and that. He (Chu) said yes, yes. All
these we did not tell him (the master). We don’t know ourselves. Because we
did not know where he had been. But that master knew.
Although Mrs. Chu was readily receptive to the idea of spiritual healing, Chu
was “skeptical” at first. However, he came to see it as a last resort, a desperate
approach to bring forth a hope that was denied by biomedicine.
Chu: “I was very skeptical (about spiritual healing). But” (interrupted by Mrs.
Mrs. Chu: “He was still hospitalized then. We had to do a pass and went to the
Chu: It was to treat a dead horse as if it were still a live horse.
His brain damage was like a “dead horse” because of the irreversible nature of
brain damage. The hope of complete recovery was quenched, at least from a
biomedical perspective. On the other hand, spiritual healing offered some hope. The
master diagnosed the problem –“ this child has been very badly frightened” and
offered treatment, “bring that person (Chu) over.” The master treated him like a “live
horse.” A sense of hope was renewed. Chu indeed was able to raise his arm after his
first personal visit to the spiritual healer. But they had to discontinue, because they
did not want to burden Chu’s married sister with transportation.
Mrs. Chu’s resort to, and her following experiences with spiritual healing to
facilitate Chu’s recovery were not uncommon on the ward. Albeit this was probably
the most dramatic one personally experienced by the patients I came to know, though
I had heard more miraculous anecdotes circulated among the patients and caregivers
on the unit.
For the majority of the patients on the unit, they were not as mobile as Chu and
were unable to take a trip to temples themselves, their friends and families went and
asked for blessing on their behalves, just like Mrs. Chu and his sister did in their first
visit. The caregivers (and patients) attended healing rituals offered by shamans,
prayed, and gave offerings in terms of food or/and money for Gods’ blessing. They
brought back blessed food and ornaments with special designs and writings, such as
miniature statues of Gods or blessed ornaments on a necklace, wristband, a necklace,
and a breast pin. These blessed objects from various temples were so common that
their meanings were rarely discussed except maybe where it was attained. They
could also be seen on the bedside chest or the wall of the patients’ rooms, a picture of
A traditional Taiwanese belief: A married daughter is like a basin of water that was thrown
out of the door, meaning that she was no longer part of a family. Therefore, Mrs. Chu did not want to
bother her daughter with the burden of Chu’s family.
the Gods, a Fú.
Some patients played chanting Sutra on tapes all day in their
These trips to temples could be very time and energy consuming for the
caregivers, as most of the temples were in rural areas and the rituals also asked
particular offerings that needed special trips to various places to collect. As Mrs. Lo
described her many trips to seek blessings to facilitate Lo’s recovery after a severe
If people told me one that is good, there I went. … I must have gone to a dozen
places, walking under the sun for many hours looking for the temples. It took a
lot of time and energy. .... My husband said, don’t do this anymore. Doing so
much still did not wake him up. … I said, I have begged for all the Gods till
there was no God left that I did not visit. I can only beg them to bless us now. I
have begged the Gods to this degree. I don’t know how to continue to beg. I
don’t know. Only pray that these Gods will bless us. … That is it. I don’t know
what more I can do. I have taken care of him to the point that I am becoming
stupid. And I cannot continue to beg (Gods) anymore. … I do not have the
strength. … That is way I have not been do much begging (Gods for blessing)
and asking (Gods for prognosis). Begged till I had visited all the Gods, you
know. … Must have already prepared more than a hundred offerings.
As described earlier, Mrs. Lo could not understand at all the biomedical
interpretation and management of Lo’s head injury “How should I know … it is too
deep to know.” She considered Lo’s illness as “life play tricks on us.” As if in order
to regain control of her life amidst the loss of control to biomedicine and fate, she
seized every opportunity to confront the “tricks.” One way for her was to pursue
spiritual healing, “If people told me one that is good, there I went.” She had gone to
Fú: a piece of paper that has been blessed by Gods and that has written symbols on the
paper to repel negative spirits.
One of the folk beliefs in Taiwan is that where there is the symbol of the God, God is
present. The ever presence of the symbols of Gods reflects the desire of the patients and caregivers for
the blessing of God all the time, after such a “unlucky” disease.
many places and spent a lot of time and energy in her endeavor to pursuit spiritual
healing, to the degree that it took a heavy toll on her. “I have taken care of him to the
point that I am becoming stupid. And I cannot continue to beg (Gods) anymore.”
Having said that, she later on also said that if she heard of a place that she had not
been there before, she would still go “to beg God for blessing.” It was a hope that she
could not let go.
Even though almost every patient had some spiritual-oriented explanation for
their diseases, not every patient tried spiritual healing for various pragmatic reasons,
such as limited financial means and energy to do the trips to temples as well as
availability of information and people who were willing to pursue this means of
healing on behalf of the patients. Yang’s daughter had gone to temples on her behalf
to ask for blessing once. Yang seemed to be very willing to try further spiritual
healing if she had the means to go herself. However, Mr. Yang, not a person into folk
religion, was always very apprehensive about adding extra burden on his sons
their families. But they seemed to be in the minority.
In sum, the prevalent spiritual-oriented illness interpretation and healing in
Taiwanese society provided the context in which such an approach was available to
the patients and caregivers. However, individual circumstances such as previous
experiences, supportive network by families and friends, logistics of pursuing the
Yang had several arguments with Mr. Yang during the four weeks they were there. The
reasons were mostly because of disagreements on asking their sons for help. For instances, what Yang
sometimes desired, such as a specialty food and transportation assistance, would require help from her
sons and their families. Mr. Yang however forbade Yang to ask them and also refused to make the
requests himself and because he did not want to add extra burden on his sons’ families.
approach (money, time, energy, etc.) also play an important role in the individual’s
choice of spiritual-oriented occupation in seeking better health.
Pursuits of Traditional Chinese Medicine for Better Recovery
Here in this section, a combination of health-seeking occupations that built upon
Chinese medicine is discussed. The rationale and activities that are involved with
acupuncture, qi therapy, massage, and consumption of herbal medication are
discussed. Probably of all the alternative health-seeking approaches, herbal
medication was the most controversial one on the unit. Pursuit of herbal medication
is an important occupation for many patients and caregivers. However, they had to
deal with the censure of its use by their rehabilitation health professionals. Use of
herbal medication was turned into an underground activity on the unit.
Acupuncture, qi therapy, massage, etc.
Obstruction of Qi and blood flow is widely believed to be a possible cause of
physical ailments. In addition to intake of a special diet and herbal medication,
patients and caregivers use a variety of other approaches to facilitate qi and blood
Patients and caregivers learned massage and manipulation to work on their
body, in particular those body parts that lost motor and/or sensory control, to dis-
obstruct the blood flow and facilitate blood and qi flow, to relax the muscles, and
keep the limbs flexible.” They learned these techniques from friends, relatives, and
in particular from the experienced hired personal aides who were experienced with
caring for people with physical disabilities and usually very willingly to share their
experiences. I frequently observed that caregivers performed some form of massages
and manipulation on the limbs of the patients when they were resting in their rooms
or when they were taking a break from the exercises in the therapy clinics. There are
exceptions to this.
Chen and Chu did not receive much massage and manipulation from their
caregivers. Because of Chu’s heightened sensitivity of others’ touch which often
caused him a great deal of pain and his frequent physical aggressiveness towards
Mrs. Chu, Mrs. Chu did not want to do any massage and manipulation on him.
Mrs. Chu: “he always complained of pain when people touched him, when he
is upset, he does this (made a gesture of twisting her neck), I am not doing this
Chen asked Ms. Huang, his hired personal aide, to provide massage for him but
she skillfully refused.
“You know yesterday he asked me to do this massage. I think that he sees
other people doing it and he wants it too. I did not say anything. But the next
day I ask the therapist whether the massage was effective in improving his
ability to control his body. The therapist did not think so. So I told him and he
did not ask me again.”
Qi therapy is another popular technique that was quoted a lot by patients and
caregivers as beneficial. Some patients had Qi-Gong masters visit the unit to do Qi
therapy. Some brought patients to visit Qi masters in one of their four-hour pass.
Chen received daily Qi therapy from a Qi-Gong master every weekday evenings
during the first few weeks of his stay. His friend had referred and paid the master to
provide the therapy. The master claimed that Chen’s stroke was a result of an
obstruction of Qi-flow in his body. He came every day to transfer good Qi generated
by his body to help clear the obstruction and the bad Qi Chen received from the
polluted environment in hospitals where many diseases exists. During his visits, Ms.
Haung sat at the doorway to bar any entrance of visitors who would have brought in
bad qi and interrupted the qi atmosphere in the room. Nurses were aware of such
schedules as well and they would do their rounds on Chen before his Qi master came
in. Among the patients that I closely observed, Chen was perhaps the only one at that
time on the unit to have regular visits from qi masters. However, there were plenty of
anecdotes with similar qi therapy recounted by patients, caregivers, and staff.
There are various other alternative therapies that were not as commonly seen as
the above and I had not personally observed but were shared with me by some
patients and caregivers, for example, bloodletting, acupuncture, foot reflexotherapy,
and folk herbal treatment for various problems associated with the patients on the
Chu relied on daily acupuncture done on his head to facilitate the blood flow in
his brain after he was medically stable to discharge from the hospital. He endured the
headache associated with the therapy for two months until the intensity became
unbearable and he ran out of the insurance allowance for acupuncture. He had to
stop. But he planned to return to acupuncture after his discharge from KMH. Mrs.
Chu supported his decision because both of them in the past had satisfactory
For example, to soak a limb with sensory loss in hot water that were previously boiled with
herbs to help recovery of sensation, to soak a limb with edema in hot salty water to help with release
of edema, to apply a specialized herbal juice to adjust qi and blood flow in body, to apply a herbal
paste to relieve soreness of the limbs or to help with healing of pressure sore
experiences with acupuncture to ameliorate physical ailments and unpleasant
experiences with biomedicine.
Mrs. Lo: “Whatever people said that was good, I got it (for him to eat). (He)
finished this (herbal medication and/or specialty food) and then change to tube-
fed that. Finished that and tube-fed this. … It is like, his stomach is like, tube-
feeding non-stop. Tube-feeding to this point (he) is still like this (referring to
Lo’s semicomatose). Still tube-feed non-stop. … (I tried) everything. He is still
like this. There is no better way. … People told me and I tried. … You can not
let them (the doctors) know. … I did it stealthily. I did not tell anyone. They
(the medical professionals) did not know what we are having. … We do not let
them see it. Sometimes when they saw it they scold and make you sign (a
contract) saying if anything happens, you have to take responsibilities. …
When he (the doctor) did not come, I made the preparation and fed him. If they
(the nurses) bring medication, like they just brought medication, We then see
what to feed him now. When to feed him what. Timing has to be precise. That
Use of herbal medication as a health occupation has a long history and has been
very popular in Taiwanese for health maintenance and illness management,
particularly for people with chronic illnesses and with neurological or
musculoskeletal problems (Cheu, 2001). Many patients and caregivers had regular
herbal medication for self-health maintenance or for illnesses, such as control of high
blood pressure, even before they came to the unit; therefore, herbal medication was
already a part of their daily routine before their stay on the unit.
Although openly against the simultaneous use of herbal medication and
prescribed western medication by the patients and caregivers on the unit, many staff
took herbal medication for their own health maintenance. However, when it came to
the patients’ use of herbal medication, their attitudes were skeptical. They believed
that because there was still very limited knowledge how herbal medication might
interact with western medication, it was best for patients to try only western
medication on the unit.
The differences in the use of herbal medication between doctors and patients
reflect a fundamental ideological conflict between biomedicine and the traditional
Taiwan medical culture. Biomedicine insists on one absolute interpretation and
management of disease, whereas traditional Taiwan medical culture is characterized
by pluralistic healing approaches. Having being immersed with the cultural
knowledge of medical pluralism in Taiwan, some rehabilitation staff took herbal
medication for their own self-health maintenance. However, also being acculturated
into biomedical ideology that excludes all other alternative therapeutics and expected
to treat their patients with biomedicine, the rehabilitation staff understandably
assumed a skeptical attitude when it came to the patients’ use of herbal medication.
In addition to ideological conflicts, there were also power issues involved in
taking herbal medication on the unit. The rehabilitation staff was supposed to uphold
the biomedical ideology and therefore this responsibility put them in a compromised
position of having to maintain the exclusive primacy of biomedicine and at the same
time conceding to the fact that medical pluralism and herbal medication is part of
everyday practice for people in Taiwan in terms of health maintenance.
One way to control the possible conflict was to convince patients and caregivers
that there were possible deadly complications when herbal medication and
biomedication were used together, because there might be possible interactions
between the ingredients. This interaction, which none of the rehabilitation staff could
specify what kind of interaction they had encountered in the past, could potentially
bring harm to the patients whom the rehabilitation staff were responsible because
they were supposed to be in charge and to “do no harm.” Therefore, they made the
patients and caregivers “sign a contract” that if they were caught in taking herbal
medication to release them of the responsibility
The majority of patients and caregivers took both western and herbal
medications. However, when asked if there was any concern about the possibility of
herbal medication interacting with western medication they took, I was always told
that as long as it was taken at least thirty-minutes apart, it was OK. “Timing has to be
precise.” “We have to take it half an hour or an hour later (after taking doctor-
prescribed medication). … Then it will not conflict.”
Another means that the rehabilitation professionals seemed to use to avoid the
appearance of compromising the primacy of biomedicine was a “don’t ask, don’t
tell” approach. “The nurses did not dare to ask,” said Mrs. Chu. The rehabilitation
staff did not voluntarily ask the patients and caregivers whether they used herbal
medication. The patients and caregivers were aware of the professionals’ opposition
and, therefore, carefully kept their herbal medication away for fear of their discovery
and deliberately disguised their consumption. In one of my interviews with a patient
and his family, when asked if they had tried any herbal medication, the first response
of his family was, “ you are not a spy, are you? Will you tell on us?” Mrs. Lo had
said: “You can not let them (the doctors) know. … I did it stealthily. I did not tell
anyone. … When he (the doctor) did not come, I made the preparation and fed him.”
Mrs. Chu also shared her experiences with me:
Now we have in powder (herbal medication in powder form). … He (the
doctor) did not know that it was for the patient. Sometimes, sometimes the
caregiver, the family already could not maintain physical health (with the
demand of caregiving). So the family has to take it (herbal medication). How
could he know (whom the medication is for)? The nurses did not dare to ask
either. If she asks, we say that it is for us (the caregiver). Like my herbal
medication is also stored there (in the drawer). If the doctor asks, I tell him it is
for my health maintenance. He will not know. There is no name-tag there.
It seems that both rehabilitation professionals as well as the patients and
caregivers engaged in this complicit practice to ensure, at the appearance, the
primacy of biomedicine and at the same time allows individuals to make their own
choices of the healing approach they wanted to use. Mrs. Chu and Lo denied their
use of herbal medication when being confronted by professionals, although it rarely
occurred. It only happened when they were “caught in the act” or in Chu’s case, were
reported to NOT take western medication but took herbal medication. For example,
Chu’s nurses and doctors suspected Chu’s not taking his western medication and
having herbal medication. They had received reports from other patients or
caregivers and also were suspicious of Chu’s not taking his prescription because
many of his problems, such as impulsivity, multiple muscular pain, and frequent
diarrhea, did not respond to the medication they had prescribed. But Mrs. Chu and
Chu flatly denied it when his doctor raised the question. And they deliberately took
the nametag off the pack of their herbal medication so that they could pretend that
the medication was for Mrs. Chu, whom the rehabilitation staff had no authority
because she was not their patient.
Many patients took herbal medication for many purposes. The most common
ones are to adjust the qi and blood flow in body, to increase physical stamina, to
improve constitution, to clear the blood clot in the brain, and etc. Mrs. Huang, a
caregiver for her husband with a bilateral stroke, had tried various types of oral and
external herbal medication to help him with his many symptoms, such as pressure
sore and resolution of blood mass after brain hemorrhage. Like many other patients
and caregivers, she actively exchanged information on the effectiveness, cost,
prescriptions, and sources of their herbal medications in their private talks. She had
tried various herbal medication based on personal experiences relayed by fellow
patients and caregivers. She had commented once to me that the expense for herbal
medication, which was mostly not reimbursed by the insurance, was over one million
dollars (an average bill for one rehabilitation stay was about a few thousand dollars).
She felt that it was effective and therefore a worthy medical expense.
With only a few exceptions, almost every patient and caregiver on the unit that I
talked to was, or had been on some kind of herbal medication therapy at some point
after their illnesses. I had talked to many people who had debilitating illnesses for
many years and came to the clinic on an outpatient basis and yet had not met one
who did not personally try any herbal medication at some point in their journey to
pursue recovery. However, despite of the cost and energy spent in the pursuit of the
herbal medication, very few patients or caregivers could specifically testify to its
effectiveness. It was, however, generally acknowledged as “having only benefits and
no detriments” or “if it did not directly cure the disease, it is good for the general
There were exceptions on the unit, patients who did not try herbal medication,
mostly the first-timers, Chen and Yang among them. Chen considered the diet rules
designed by his TCM doctor impractical, one of them being all liquid drunk at 35°C.
Therefore, he did not want to try any of his prescriptions. Yang had wanted to try
herbal medicine but did not know of any clinics that she could go to. In addition, Mr.
Yang did not want to add extra financial burdens on their sons in terms of the money
and energy to seek out alternative therapies. He also prided himself as a person who
had been in good health and rarely needed to pay particular attention to health-
promoting behaviors, which I think greatly influenced the way he provided care for
But within one week after her discharge, her sister-in-law visited her at
home and brought her to a famous TCM doctor in Taipei (a three-hour drive away),
whose medication, she felt, greatly helped ease her cardiac symptoms as well as
improved her appetite and general stamina. She did look much more rosy and in
better spirits when I visited her at home one month later. There were also a few other
patients who did not try out herbal medication because their families were more
receptive to the biomedical ideology that excluded other alternative medicines. They
Even though Mr. Yang was very patient with assisting Yang with daily routines on the unit.
Several times Yang hinted at Mr. Yang’s lack of attention or willingness to seek out alternatives as
many other caregivers did. She also did not agree with Mr. Yang’s apprehension about asking their
children for help, “We have done so much for them in the past. Why cannot I ask them to do these
[making some special food, taking me to a Chinese doctors, et cetera] for me?”
objected to the idea of taking western and Chinese medication at the same time. The
patients themselves, from my observations, wanted to try herbal medication.
In short, similar to the pursuit of spiritual healing, perceived cause of the illness,
personal beliefs of the caregivers and patients and their past experiences with herbal
medication, the practicality of taking the medication, knowledge of a specific clinic
to get prescriptions, financial resources, and family dynamics play important roles in
deciding whether herbal medication was to be used. The use of herbal medication
was turned into an underground practice because of the perceived objection of
Use of Alternative Therapeutics in a Biomedical Institution
The beliefs and philosophy of the alternative therapeutics enabled the patients
and caregivers to connect their illness with their life story and experiences, to seek a
sense of coherence out of the chaos imposed by their illnesses. With biomedicine as
the dominant ideology in insurance-reimbursed medical institutions such as KMH in
Taiwan, biomedicine is usually the first resort when people have acute illnesses that
cannot be handled by home remedies (Cheng, 1998; Cheu, 2001). However, even
when the patients and caregivers stayed in a biomedical institution, they actively
pursued and initiated a variety of alternative treatments, either simultaneously or
consecutively, from the other sectors of the health care system, e.g. spiritual and
Chinese medicine-based approaches, to facilitate recovery.
There are two issues here that are inter-related and warrant further exploration:
the perceived needs for multiple approaches and its compatibility with biomedicine.
First, as demonstrated in various accounts of patients and caregivers, many discussed
in great length and provided various explanations of why they had the illness.
However, a biomedical interpretation of their illnesses was least dwelt upon. Various
spiritual-oriented interpretations dominated their narratives in trying to make sense
of their experiences. Most illness experience studies done in western culture did not
have such extensive discussions on the perceived multiple accounts of illness
explanations. The difference suggests the possibility that the patients and caregivers
on the unit did not find any explanation by a specific framework absolute, even the
one biomedical explanation offered by the authorities in the hospital, and were
agreeable to the multiple interpretations available in Taiwanese culture to help them
better understand their experiences. Depending on their experiences and the context
in which they engaged in making sense of this experience, various possibilities based
on different frameworks were considered. However none are complete and therefore
beg for alternatives. Five months after his head injury, on our last interview, Chu and
Mrs. Chu were still haunted by what they had to go through all the misery with Chu’s
They understood that Chu’s head hit the floor when the car accident happened,
but why did it happen in the first place? Chu elaborated in details on his perceived
coincidences of multiple events that lead him, on one evening after a wedding party,
to stand on the sidewalk to help with a private delivery of his boss when a van ran
over him. Many “if I had” statements that would have changed the course of his life
pervaded many of his narratives. For example,
If I had refused to offer help with delivery. .. If I had not wanted to save the
dish for home and finished it right then, I might have a diarrhea and would
have to stay in the bathroom. Then I would not have come up on the sidewalk.
If I would have gone a few minutes early, I would not run into Fan (a co-
worker), then he would not ask me to come back (to the boss’s home) with him.
Experience has a subjunctivizing quality that demands rooms for multiple
interpretations (Brunner, 1986). Fate/coincidences, debt accumulated in past lives to
his co-worker and his boss, past sins, evil spirits, and poor constitutions were mostly
what Chu and Mrs. Chu perceived that why Chu was hit by a van and why he
suffered a stroke, not happening to everybody with a head injury but to Chu.
Therefore, a straightforward and absolute biomedical treatment of high-oxygen
density treatment and rehabilitation and medication would not have helped with all
these causes. It required more interventions that specifically addressed the causes. It
asked for cleansing rituals to rid of evil spirits, acupuncture and nutritious food to
improve Chu’s qi-flow and constitution
The illness experiences of the patients and caregivers on the unit also
demonstrate a sharp difference with their counterparts in western context in terms of
how multiple healing approaches were perceived to interact with biomedicine. Illness
experiences with alternative medicine have drawn attention from researchers,
particularly when the illness has a chronic nature (Garro, 1992; Jackson, 2000).
These accounts often reported an initial disappointment with biomedicine before
alternative medicines were sought. In addition, biomedicine and alternative
therapeutics, at least from the perspective of medical authority, were often
considered as incompatible (Chou, 2001). On the rehabilitation unit, the therapists,
nurses, and doctors, who received biomedical education in their professional training
and some of them used herbal medication for their own health maintenance, were
more dubious of these alternatives and considered most, with the exception of herbal
medications and acupuncture, as more psychological supports for the patients and
The majority of the patients and caregivers on the unit simultaneously adopted
multiple approaches from the beginning, even before they realized the chronic nature
of their illnesses. They considered the relationship between different types of
therapeutics as complementary, not incompatible, particularly when asked in terms
of its relationship with rehabilitation, although there was an openly-acknowledged
understanding that their rehabilitation professionals disapproved of the joining use of
alternative therapeutics with rehabilitation, particularly herbal medication.
Nonetheless, the use of multiple approaches to deal with their illnesses was still
widespread and popular. They however recognized the importance of fitting into the
ideology of rehabilitation on the unit, all the complementary therapeutics they
adopted rarely conflicted with the execution of rehabilitation therapy. Qi-gong, TCM
medication, herbal treatment, and spiritual healing all took places outside of the
therapy schedules and became a complicit underground practice on the unit.
The caregivers and patients carefully kept their engagement in alternative
therapeutics from their rehabilitation professionals. They might ask their therapists of
their opinions with very general, impersonal questions, avoiding giving clues of their
own personal use. Their therapists also rarely actively investigated the engagement
of their patients in this matter. Both sides engaged in the complicity to maintain the
underground practice of alternative therapeutics. Therefore, although therapists were
aware that therapeutics other than rehabilitation was common on the unit, they often
did not know about specific details such as which patient adopted what therapeutics.
Chen’s therapists were never made aware of Chen’s daily Qi-Gong therapy in the
evenings. Relevant discussion occurred only in the private talks between patients and
caregivers that were prevalent on the unit.
To summarize, patients and caregivers used multiple frameworks to make sense
of their illnesses and simultaneously or consecutively adopted a multiple approach of
therapeutics to facilitate the recovery. The priority of therapeutics they adopted
varied. At the time of my fieldwork, the participants, being in a hospital, accepted
rehabilitation as the top priority to pursue in their quest for recovery. At other times
and places, other therapeutics may take over the precedence.
Patients and caregivers considered the relation of alternative therapeutics and
rehabilitation in the hospital as complementary. Unlike what has been suggested in
many studies with chronic illnesses in western societies that people turn to
alternative medicine after biomedicine failed them. Biomedicine in the form of
rehabilitation did not or had not failed the patients and caregivers on the unit.
Instead, they respected the primacy of rehabilitation upheld by the rehabilitation staff
on the unit and therefore turned their engagement in alternative therapeutics into an
One last note on the engagement of alternative therapeutics. Preparation and
consumption of specialty food on the unit was another alternative therapeutic almost
every patient and caregivers used at some point in their stay. Most specialty food had
some herbal ingredients that were used in TCM herbal medication; however, its use
did not seem to be a major issue with the rehabilitation staff as herbal medication
did. I had not heard any compliant from caregivers that they were forbidden to
prepare specialty food with herbal ingredients. One possible explanation for the
acceptance of food with herbal ingredient on the unit might be that it did not threaten
the authority of the rehabilitation staff (whom were trained in biomedicine) as herbal
medication did. The pursuit of herbal medication usually involves consultation,
diagnosis, and prescription from a TCM doctor and therefore encroaches on the
exclusive authority of the biomedical-oriented physiatrists. On the other hand, intake
of specialty food with herbal ingredients to improve health and recovery seems to be
considered more as a folk health behavior, which the patients and caregivers were the
authorities of what to eat and how to eat. It therefore did not directly question
biomedical diagnoses and management and did not pose threat to the authority the
Because of the hospital structure in Taiwan and the severity of the illnesses that
brought the patients and caregivers to the hospital, the biomedical interpretation and
corresponding management offered by the medical professionals was usually the first
one the patients and caregivers on the unit received in dealing with their illnesses.
However, the deliberate vague and ambiguity that the medical professionals
communicated with the patients and caregivers regards to their disease and prognosis
left them with a sense of uncertainty and confusion, lack of control as well as a lack
of hope for the future.
Narrative offers offer the patients and caregivers opportunities to connect their
acute-onset, debilitating illnesses to their life story, to make sense of their experience
amid the chaos brought upon by the illness. They did so in part by utilizing the
cultural knowledge on health and illness in Taiwan that allows multiple alternative
illness interpretations and management in dealing with diseases. Contrary to the
submission to authority in biomedicine, pursuits of alternative therapeutics
empowered them to regain control of their illness management, to pursue perceived
appropriate steps in facilitating recovery.
The patients and caregivers were receptive of trying out various approaches but
the availability of options did not guarantee engagement. Various pragmatic reasons,
such as personal and situational factors, including past encounters with alternative
medicine, personal understandings of these alternative approaches, financial
resources, source of information, social network, the attitudes of the rehabilitation
professionals, play important roles in their choices and engagement of a specific
alternative therapeutic. The simultaneous adoption of multiple therapeutics and
biomedical rehabilitation were seen more complementary to each other rather than as
challenge or a resistance towards the dominance of biomedicine.
Chapter Eight Therapy is Pure Agony
Rehabilitation as dominated by biomedical ideology and mediated by Taiwanese
medical culture has shaped the rehabilitative experience of the patients and their
interactions with their therapists in the KMH rehabilitation therapy clinics. Drawing
from data related to the experiences of the patients and caregivers when they were
doing therapy in the KMH therapy clinics, this chapter explores how patients’
experiences with rehabilitation were dominated by biomedicine. Their experiences
were characterized with an emphasis on physical training, repetition, uncertainty of
body, and pain. While the lived bodily experiences of the patients when undergoing
rehabilitation is central to this chapter, a Foucaultian perspective of how the body is
reconstructed via a visible and semantic gaze towards biomedicine and technologies
of disciplinary powers is evident in the narratives of the patients regarding their
therapy (Foucault, 1963/1973b).
The therapy clinics and the routines of therapy for a particular patient, Lin, are
described first. Then, the focus of the main portion of the chapter becomes the
exploration of rehabilitative experiences of patients and caregivers in therapy.
Literature in medical anthropology and nursing on bodily experience after illnesses
and a medical perspective of the body are the main theoretical references for this
chapter. The first theme is the learning of a biomedical framework to scrutinize,
control, and perceive one’s own body, through repetitions of therapeutic exercises.
The ultimate rehabilitation goal for Lin was to re-own his body and to experience his
body as he did prior to the injuries. In therapy, however, he was trained to disown his
body by transforming his body from an experiencing subject to an object that he
himself could observe. He had to learn not only how to observe his body in discrete
parts, in specific movements and postures but also how to disregard the subjective
experiences of his body such as pain when, from the perspective of his rehabilitation
professionals, these experiences interfered with rehabilitation.
Secondly, studies of illness experiences have reported that people with physical
illnesses often experienced a sense of uncertainty and unpredictability. Such a sense
of uncertainty and unpredictability was, ironically, further intensified by the daily
clinical rehabilitation therapy in which the patients participated. It was achieved
through the process in which they came to accept the primacy of a biomedical
framework to their physical state and faithfully engaged in repetitive practices of
carefully prescribed therapeutic exercises, which were originally aimed at increasing
their control over and confidence in their bodies. It was as if to reclaim their bodily
control, they had to first lose confidence in their own perception and control of their
bodies and learn to accept the authority of a new framework and others over their
The third issue explored here is the pressure from the therapists and caregivers
on the patient to reframe the bodily pain he experienced in therapy as “nutritious
food” that would aid in his recovery. In doing countless repetitions of exercises that
challenged his physical capacities, the patient was expected not only to disregard but
also to willingly bear some negative bodily experiences when these experiences were
considered non-productive, such as feeling exhaustion, pain, and agony. They were
encouraged to see this physical agony as an inevitable pathway to recovery and
something that was “good for them.”
The clinics were open from nine to twelve in the mornings and from two to five
in the afternoons. Most patients had thirty-minute individual treatment sessions each
for physical therapy and occupational therapy. Because therapy was usually very
exhausting, therapists took tremendous care not to schedule both physical therapy
and occupational therapy in the same half day. The caregivers and patients quickly
learned that they could maximize the use of the rehabilitation clinic by coming down
to the clinics earlier than their scheduled time and/or stayed after their therapy to use
the equipment. In fact, they were encouraged to do so. In physical therapy, therapists
signed their patients up on certain apparatuses before and after their scheduled
individual sessions as soon as they felt that the patients were physically strong
enough to do a longer treatment session.
Therapists set up schedules for each apparatus, usually fifteen-minute
increments per patient. Patients, in addition to the 30-minute individual therapy
sessions in which therapists offered individual hands-on therapy, went through a set
of three or four exercises in each physical therapy visit. Caregivers and patients also
quickly familiarized themselves with the use of the equipment. The caregivers
became sort of therapy assistants to assist patients with these exercises. Although
their therapists were often too busy to give them much individual attention during the
“extra” therapy time, both sides did not hesitate to have brief exchanges as needs
arose. On average, every weekday patients and caregivers spent two to six hours
(such as those patients and caregivers who reported to the clinics from the moment
its door opened until closed), depending on the stamina of the patients and
caregivers. There was no therapy on weekends.
It was common for visitors, family members, and caregivers to accompany a
patient to the therapy clinics. Because of the extensive time patients spent in therapy
and the number of caregivers or visitors with the patients, the clinics were always
jammed with people and bustled with activity. It was nearly impossible to freely
wheel a wheelchair in the clinic without other people turning and shifting positions
to make way. There were many dialogues among people, patients, caregivers,
visitors, and therapists. There was also a lot of observation, which sometimes could
be considered very intrusive from a person who wanted to be left alone. The ample
social exchange among the patients and caregivers are particularly noted here
because it set the stage for information exchange and morale building that were
central to the rehabilitative experience of the patients and caregivers on the unit.
With the introduction of the therapy clinics, I now proceed to the rehabilitative
experiences of the patients with therapy on the KMH rehabilitation unit.
Lin’s wife said, “I like the program here better than the other one. The other
one just bent your arms … Here (it is) compulsory rehabilitation. … They try
all means to get him (the patient) to do rehabilitation.”
Doing therapy in the KMH therapy clinics demanded that the patients go
through carefully prescribed therapeutic exercises intended to increase physical
control, regardless of their own will. The rehabilitation on this unit was better, at
least from the caregiver’s perspective in this case, because it was “compulsory
rehabilitation.” Patients were not merely passive objects with therapists bending their
arms. On this unit, the patients had to work hard. The therapists used “all means to
get him to do rehabilitation.” These means included encouragement, bribery,
intimidation, coercion, et cetera. I also observed many instances in which the
therapists or caregivers deliberately extended the exercises despite the patients’
wishes to discontinue, using such tactics as, “Let’s do ten more and you can rest.”
The patients rarely got their wishes right away. They could plead or object the
challenge because of fatigue, pain, or perceived inability to do the task, but their
pleas were not usually taken into consideration in the way they wanted. The therapy
often went on.
In his first few days of therapy, Lin learned that it did not matter much whether
he wanted to discontinue the therapy because of physical discomfort or fatigue. He
had to do it. On his first day of therapy, even though Lin was uncertain that his body
could meet the demands of the task to sit up, Xiao sat him up anyway, despite Lin’s
visible tremble, profuse perspiration, and murmurs of nausea and dizziness during
the process. He described the session for me (for which I was present, but he seemed
to forget or not notice my presence) the next day:
Lin: “I sat up one and a half hours yesterday.
Wife: "No. It was only half an hour.”
Lin: I was so nauseated, sweated like rain, I also had a headache. I
slept for three hours after therapy. It was physical exhaustion,
The time in therapy was so difficult for him that half an hour felt three times as
long. He was so totally occupied with the “physical exhaustion and pure agony” of
sitting up that he forgot or did not even notice I was there. The second day he
pleaded for a break from therapy to recuperate. His family, after seeing his agony in
sitting the day before, was sympathetic and unsure of the aggressiveness of the
therapy. They did not bring him down for therapy, but Xiao came up to his room and
sat Lin up for another thirty minutes.
The third day I met Lin in his room prior to his scheduled therapy. I asked if he
was planning to go down for therapy. He meekly shook his head, but his mother said,
“Of course we will go. Twice a day. I am just about getting ready to go.” Lin said
nothing, as if he already knew that he had to go, even though he did not want to. He
seemed to shake his head more as a lame protest to the pressure on him to go through
therapy, in which he suffered so much, than as an indication that he was not planning
to go to therapy. It was his mother who was ready, “I am just about getting ready to
go,” not he was getting ready, he did NOT want to go. She had come to see the
“exhaustion and agony” as an unavoidable (or necessary) part of therapy, something
that they “of course” had to do, or to get through in order to realize Lin’s potential
for recovery. There seemed to be an implicit assumption that it was not Lin’s choice
in terms of whether he wanted to go to therapy or what therapy he wanted to do. He
had to perform his part as a patient who wanted to overcome his physical disability.
He had to do what the therapists and his mother said he must do.
Lin’s first two days of therapy in his own room foreshadowed his daily regime
in the KMH therapy clinics, where he dutifully attended therapy twice a day in the
next two months. During that time, Lin focused on learning how to monitor and
control his body from a biomedical perspective, where he experienced a heightened
sense of uncertainty with his body, and where physical agony and exhaustion became
a daily experience.
Surrender to the Rehabilitative Narrative
Using an interaction between Lin’s caregiver and his therapist as an example,
this section explores how the patients and caregivers were encouraged by the
rehabilitation staff to adopt the rehabilitation discourse as dominated by biomedicine.
Next, the way that Lin talked about his body both before the accident and after the
rehabilitation is discussed to demonstrate how Lin’s perspectives of his body shifted
from life-embedded to biomedical-oriented.
Lin’s life narrative was disrupted by a sudden debilitating motor accident. He
was an owner of a small bulletin board making business and “in one night” became a
patient with quadriplegia. “I was the boss. In one night, the business was closed. I am
here.” He came to the rehabilitation program in hopes of being the “boss” of his life
again. Even though his goal for rehabilitation was grounded upon the life he had
prior to the disability, doing rehabilitation on the unit demanded him to bracket that
part of life and concentrate on the main task of the unit – to regain physical control
of his body. He was expected to accept the primacy of “working hard to get his
movement back” in his rehabilitation, regardless of the person he was prior to the
accident. One physiatrist verbalized such expectation when she described her
interaction with a patient “from an upper socio-economic background:”
It does not matter if you are a professor, a doctor, or a labor worker. You come
in here and you are all the same. … There is no privilege. I heard about his
background and I did not talk to him about his work. I don’t want to emphasize
that part (of his life) so he thought that I knew and that he is very important
and receives special treatment. … Everybody is the same here. You have to
work hard to get your movement back.
The physiatrist had little interest in the personal details of her patients because
“it does not matter” who the patient was, and “You come in here and you are all the
same.” This view is consistent with the biomedical perspective of considering the
personal information of a patient as a distraction. The irony here was that the patient,
Chen, as discussed in a previous chapter, was not a university professor as the
nursing staff had believed. He was the secretary of a religious institution and had
very limited income and savings. His friends had to organize fund-raising to help
with his medical expenses. He did not volunteer any such personal information to the
nursing staff, although he shared many personal stories in our first interview when I
expressed my interest in learning from his experience.
During my interviews and observations of Lin and his family, I came to know
their struggles as a family in coping with the disruption in their lives. Lin was greatly
pained by the actions of his wife. She preferred spending her time job searching than
caring for him. He did not know what to do with his business of bulletin board
construction and his financial future if he could not reclaim his body. He was blinded
in one eye after the accident, which greatly worried him of his capacity to return to
bulletin board construction, or any kind of work. Despite all this, he did not discuss
these concerns with his rehabilitation staff because he considered them irrelevant to
his rehabilitation. For example, I asked Lin why he did not reveal his left-eye
blindness to any one other than his family on the unit, not even his rehabilitation
staff. Lin replied, “Why tell them? … They did not need to know.”
When in therapy, Lin talked about adaptive equipment, changes in muscle tone,
his ability and difficulties with sitting, standing, moving his hands and legs, walking,
et cetera. That is, he discussed with his therapists the issues that he thought they
“needed to know.” He concealed the issues that were considered irrelevant to his
rehabilitation, those issues that the rehabilitation staff “did not need to know.” He
did this even though the issues were important to his life as a continuous story. He
did not discuss his fears and anxieties of how he could go on as a husband and as a
boss who was in charge of the family and the business, now with one eye blind and
four limbs paralyzed.
There were fleeting moments in the interaction of patients and their caregivers
with their therapists when the former brought up non-biomedical issues, but rarely
did I observe a therapist make earnest attempts in following up. One week after Lin
was admitted to the unit in the therapy clinic, Mrs. Lin, Lin’s mother, was learning
from the therapist how to transfer Lin between wheelchair and bed by herself, she
commented on how her back pain increased after providing care for Lin and having
to transferring him several times a day between his wheelchair and his bed.
Mrs. Lin: My back and knees are killing me. He is a big guy and I
have to carry him to the chair by MYSELF.
Therapist: I told you to get a back brace and knee brace before. This is
for the long run. You have to take care of yourself. When you
transfer, you have to pay attention to your posture (started to
demonstrate and instruct on how to do a good transfer).
Mrs. Lin (watching the therapist but still talking): I have been so upset
that I am losing weight.
Therapist (continued to demonstrate and not responding to the
Mrs. Lin: I have been so upset.
Therapist: What? Upset about what?
Mrs. Lin: Our lives have been already difficult and now this.
Therapist: Well. It is not that we ask for it, right? (pause) Now pay
(The therapist continued to instruct Mrs. Lin on the details of doing a
good transfer. They practiced helping Lin to sit up).
In this short exchange, there was a moment that Mrs. Lin seemed to want to
share her experiences of providing care for Lin and the disruption of Lin’s disability
on their lives. She expressed her frustration with doing the transfer by herself with no
help from Lin’s wife, her daughter-in-law, and the toll of caregiving on her body. She
also revealed her anguish of a difficult life exacerbated by Lin’s disability. The
therapist at that time as well as on other occasions merely acknowledged what was
said, but did not offer any encouragement or show any interest in listening more or
sharing that aspect of Lin’s and Mrs. Lin’s life narrative. He seemed to consider this
kind of talk a distraction and he wanted Mrs. Lin to “pay attention” to the transfer
techniques he wanted her to learn. The conversation was redirected to the concrete
details of doing rehabilitation, such as how to do a transfer.
The patients and caregivers probably learned what to say and when to say it
from their experiences with the rehabilitation professionals’ avoidance of discussing
personal issues since “everybody is the same here.” They “learned to read the minds”
of their therapists in terms of when and what to say in order to fit the impression of a
good patient that does not talk about his own subjective experiences and personal
background (Mattingly, 2004b, p. 10). It was not surprising, then, that the
experiences Lin chose to share with the rehabilitation staff were those that fit into the
“working hard to get movement back” narrative, the biomedical narrative.
The therapists did not completely reject trying to understand the other-than-
biomedical aspects of the patients’ experiences. The therapists talked to their patients
and the caregivers and it was rare that one therapy session would end without any
attempts at maintaining social conversations. It does seem, however, that the
therapists filtered the information shared with the goal of ensuring an optimal
participation in rehabilitation and maximal recovery. They saw Lin and his family
from the perspective of whether he and his family were working hard to get his
movement back and whether there were obstacles in reaching such goals. For
example, from the therapists’ perspectives, Lin was someone who had a spinal cord
injury and resulting quadriplegia, and who “was pretty depressed. … did not yet fully
comprehend his own condition … still in the stage of spinal shock,” said Lin’s
physical therapist after the first week of therapy. His occupational therapist
commented, “His family did not quite get it. They did not know how to take care of
him. … He himself was fairly cooperative.”
Lin was observed through the rehabilitative lens of whether he could “work
hard to get his movement back,” which included his strengths and limitations in
The narrative here is used in an expanded sense to refer to the discourse biomedical
professionals used in their discussion of the patients, such as clinical case stories as suggested in Good,
M. (1995) and Frank’s (1995) writings.
reaching such goal. Lin’s ability to cooperate with therapy, his understanding of his
illness, his depression that might interfere with his therapy and the care provided by
his family to facilitate Lin’s recovery were the issues the therapists focused on. Lin’s
pre-accident experiences of working hard since he had been a teenager and becoming
a small business owner in his twenties were irrelevant and little known among his
The deliberation in which illness narrative is told and, eventually, in which
illness narrative precedes others is what Frank (1995) calls a narrative surrender (p.
6). In modern institutions where most people seek assistance with illness, it is the
biomedical discourse, the experience of surrendering body to medical authority,
which people learn to adopt and to accept as the prime method of interacting with
their health professionals (Frank).
The ill person not only agrees to follow physical regimens that are prescribed,
she also agrees … to tell her story in medical terms. … The ill person’s stories
come to depend heavily on repetition of what the physician has said. (p. 6)
Lin and his family had learned to tell their experiences from a biomedical
perspective when they considered it was appropriate, such as when they talked to his
rehabilitation staff and when I asked they how they were doing with rehabilitation.
Doing rehabilitation in the therapy clinics means subjugating one’s experience to a
biomedical discourse in not only the interactions with the rehabilitation staff, but also
in the way patients experienced their therapy and their own bodies, as evidenced by
the significant changes in the way Lin talked about his pre- and in-rehabilitation
body. When Lin talked about his bodily experience prior to the accident, the
descriptions of his body were situated in his life and closely related to how Lin saw
himself as a person who was very physical capable and had control over his life.
(Before the accident) I could carry the bulletin board on my back and climb
twenty flights of stairs. … (describing a hospitalization for a fall from the
fourth floor of a building in the past) I stayed in hospital for four days. I did the
hospital, just so I did not have to make appointments to see doctors every day.
I had my own room but I went home and came to the hospital whenever I
wanted. I asked for discharge the third day.
(Describing how he never paid attention to health-keeping behaviors and his
erratic, supposedly unhealthy daily routines prior to the accident) I really had
very few experiences with hospitalization or any doctors. Sometimes I had a
cold, but when I had a cold, I went to see the doctor. Got one shot. Took the
medicine home and had one dose. The rest, I discarded them all.
Although body was the focus in this short statement, the description was
situated in Lin’s life and his perception of himself. It told of Lin’s work that
demanded great stamina—to carry a big bulletin board on his back and climb
numerous stairs. It also told of an aspect of his personality that tried to keep things
simple and under his control – such as that he agreed to be hospitalized, so he did not
have to make daily outpatient appointments to see the doctors. In fact, he did not stay
in the hospital, but actually came and went as he pleased. He experienced his body in
the context of his life and its capacity to do hard work, sustain major impact, and
recover from numerous previous injuries he had, such as a fall from one and half
flights of stairs and another fall from the fourth floor of a building. He never paid
much attention to health maintenance, as if he was invincible. He asked his wife, “be
afraid of what?” when she was on the scene after the falls. There was a sense of
pride, control, certainty, and connection with Lin as a person as he described his
Lin’s discourse regarding his body after a short stay on the rehabilitation
changed from a narrative that was about who he was in lieu of his body to a
biomedical-oriented narrative that was only about a body that was uncertain and had
little connection to his life and to him as a person. Lin described how his physical
therapist taught him to stand:
You know that I practiced standing today! (excited). He (the physical therapist)
taught me when I stand, I stand and do not move. And then I have to control
(move) my hips to right, to left. Keep my head straight. And I also need to
move my leg forward and backward. Forward is the right way. … And I have
to watch the tone (of my legs). Sometimes in a certain posture, it will come
(tremors of the legs) and I have to push it down to calm it down. … If not, I
fall backwards…Left (leg) is easier to control than right.
This talk of body in terms of movement, posture, muscles, and tones was very
much a biomedical talk. The minute details of how he regained control over his body
with a biomedical gaze became the center of the narrative that he shared with his
therapists on the rehabilitation unit, and with me as well as every day we
communicated his progress in therapy. In this narrative Lin as a person was veiled,
however. Lin had learned how to tell a biomedical-oriented story. I wish to stress that
the clinical language most patients and caregivers resorted to when interacting with
their rehabilitation staff regarding their injuries was not the only mode of discussion
when they talked about their rehabilitation experiences on the unit. Lin and Mrs. Lin
shared many other aspects of their experiences with fellow patients and other
caregivers. I often observed Mrs. Lin engaged in earnest discussions with other
patients and caregivers about their struggles to deal with disability and rehabilitation,
that is, more life-embedded story exchanges. Other caregivers and patients also
sometimes related Lin’s stories in our conversations. Lin did not totally surrender the
mode of his storytelling to a biomedical discourse. Instead, he learned a new one. He
learned to tell his story in clinical language, but also retained the rights to choose
what he wanted to tell and whom he wanted to tell it.
Deliberate Objectification and Manipulation of Body
Doing rehabilitation in the therapy clinics means to objectify one’s body, to see
it not as an experiencing subject, but as an object that can be observed, described,
and manipulated according to technologies developed from a biomedical perspective
in the context of rehabilitation. Interpretive-oriented research on the experiences of
people who suffer physical injuries has long reported that objectification and
alienation of body is a central theme of how these people experienced their bodies
(Akin, 1987; Dolittle, 1991, 1992; Ellis-Hill, Payne, & Ward, 2000). The experiences
of the patients with rehabilitation in the therapy clinics suggest that, with the help of
their therapists, they learned to objectify and manipulate their bodies from a medical
gaze through repetitive exercises in the therapy clinics.
In Lin’s description of his physical therapy session quoted above, the most
important task was clearly learning how to observe and control his body with a
biomedical gaze in the context of his rehabilitation. This rehabilitation gaze makes it
possible for one to see the body in terms of muscle tone and motor control, of
movement patterns and posture, of discrete body parts, of its capacity and
as well as in terms of “desirable/normal or functional and
undesirable/abnormal or dysfunctional.” It is this gaze that the rehabilitation
therapists are trained to use to see their patients and that the patients learned to see
The patient was asked to objectify his body to deliberately observe and
manipulate the body using the technologies developed in rehabilitation to facilitate
motor control. Like Lin said, “(the therapist) taught me when I stood. … I have to
move my hips to right, to left. Keep my head straight and I also need to move my leg
forward and backward. Forward is the right way.” Lin learned the techniques and the
rules. He learned how to move his body parts in certain way and certain directions.
He had to learn what is the right/desirable way to move his body.
Very often in therapy, the therapist put a mirror in front of Lin and asked Lin to
see his own reflection in the mirror to monitor and manipulate his body saying,
“Look at the person. Is he standing straight?” Such observation asked Lin to detach
himself from his body and see it as another person for whose actions he was
responsible. He learned to observe and move his body as separate, yet interconnected
mechanical parts like shoulders, hands, hips or legs and paid attention to minute
details of how these body parts moved in relation to each other and to the
environment. He learned to move his hips right or left, to bend his knees and lean his
body forward to sit down on a mat. In essence, doing therapy for Lin meant that he
I borrow the terms from Foucault’s medical gaze (1963/1973b) that emphasizes visibility
and use of language to describe what one sees. A rehabilitative gaze of the body is in essence a
mechanistic view of a visible body that derives from biomedicine.
subjected his body to the therapist’s scrutiny with a rehabilitation gaze. He then
learned how to observe and control his body with a rehabilitative perspective as well.
Under this rehabilitation gaze, Lin also learned to see his present body in a
pragmatic way and had to make choices about his body in terms of whether it was
helpful or detrimental to a future that he wished for. With his own experiences of
watching and moving his body along with feedback from his therapists, Lin realized
that although he had lost all movement below his shoulders at the beginning, not
every returning movement was always good, only the ones that could help him to
reach a certain goal.
For example, Lin learned to “watch the tone” of his legs. He was very excited
when he first found out that he had increasing muscle tone in his legs and that he
could use the increased tone to stand on his feet. However, his frustration later grew
when he realized that this increased strength/muscle tone was actually undesirable
because it was out of his control, often interfered with his ability to stand or walk,
and lead to frequent “fall backwards,” but without which he could not stand on his
feet nor walk at all. The muscle tone of his legs was something that he needed but
also wanted to rid of to attain his goal of walking on his own. His doctors had offered
him options of using medication to reduce the tone. Lin however was hesitant and
unable to make any decision by the time of his discharge. “What if I lose all my
strength after the medication?” He needed his muscle tone to stand and walk but also
wanted to rid of it to regain further control of his body.
Many other patients exhibited such a conflicting perception of their own bodies.
For example, I often saw them caress their immobilized body part such as their hands
when they were not doing exercises with them. They stroked their hands back and
forth like they were stroking a baby or a beloved pet.
Often, if their hands failed to
perform a certain task, such as grabbing a block, they also hit the hand really hard,
blaming the hand for disappointing them.
In therapy, Lin had to be constantly vigilant in order to do such deliberate
objectifications and manipulations of his body to reclaim control. He engaged in
what Dolittle (1992) calls “mind-over-body thinking” and “effortful mental striving”
(p. 122), that is, directing the bodies with the minds (Akin, 1987). The shift in
turning a person experiencing rehabilitation into an object to be manipulated is an
artifact of modern medicine (Foucault, 1963/1973b), which has dominated the
rehabilitation ideology (Gritzer & Arluke, 1985; Kaufman & Becker, 1986). In fact,
such is often the goal in rehabilitation – that the patients learn the knowledge and
skills to do self-monitoring and self-correction of one’s body according to a
rehabilitation gaze. This is consistent with a Foucaultian perspective of modern
medicine as “a technology of power, which objectifies the body in order to control it”
(Ecks, 2004, p. 81).
Medicine is a disciplinary practice (Bourgois, 2000; Wheatley, 2005).
Disciplinary power is exercised through medical knowledge and technologies to
The stroking can be interpreted in two ways. One is the interpretation above. The other is
that they were doing massage for their hands to facilitate Chi and blood flow, which was a common
practice on the unit.
investigate and control a person’s body (Foucault, 2000, cited in Samuelsen &
Steffen, 2004). The patients learned to focus on their bodies in terms of how to
discuss them, how to observe them, what is desired, and what is not desired. They
take up the knowledge and technology and internalized it so that it becomes the only
way to observe and manipulate the body in a rehabilitative context. The patient
becomes personally responsible for the objection and manipulation of his own body
(Clarke & James, 2003; Wheatley, 2005). Lin’s experience reveals that a mechanistic
view of body from a biomedical ideology, to which he at first was a stranger and
later internalized, permeates rehabilitation practice and contributes in part to the
experience of objectifying and deliberate control of the body after a physical
An Uncertain Body
A sense of uncertainty and unreliability with one’s body has been extensively
reported in illness experience studies of people with physical disabilities (Frank,
1991, 1995; Murphy, 1986). The focus has usually been more on the existential
aspect of the uncertainty that comes with a debilitated body, such as how the
uncertainty in one’s body influences one’s sense of self and one’s lived world
(Hafsteinsdottir & Grypdonck, 1997; Wiles, Ashburn, Payne, & Murphy, 2002). This
study follows the same logistics of the previous section to look at how therapy on the
KMH rehabilitation unit affected the patients’ senses of insecurity and uncertainty
with their own bodies. (Ironically, the objective of rehabilitation was to increase the
patients’ control and confidence over their bodies.)
Lin’s response in his first day of rehabilitation when his therapist asked him to
sit up in bed, “I don’t know whether I could sit. I have not sat up for two
Lin described his standing exercises the day before his discharge, “I have to
watch my tone (of the legs). Sometimes they just begin to tremble and
sometimes I can stop it by pushing it down like this (both hands on knees).
Sometimes I can’t. I just have to wait for it to wear out. … (if the tremble is
not stopped right way) I fall backwards.”
Before Lin started rehabilitation, he was not able to move his body except above
his shoulders. In terms of participating in his daily routines, he was fed, washed, and
carried places. He did not know what he could do, not even in the case of the
seemingly simple task of sitting up in bed. “I don’t know whether I could sit. I have
not sat up for two months,” said he repeatedly in his first therapy session when Xiao,
his occupational therapist, came up to his room to sit him up. He was still physically
very weak from all the physical changes his body went through with the injuries.
Lin made steady progress during his therapy. He learned to tolerate sitting and
progressed to sitting, to standing, and walking with assistance. With each success,
however, his body’s unpredictability and uncertainty seemed not to lessen, but only
manifested themselves in different ways. As he overcame one obstacle, such as being
able to sit for hours, he was challenged with the next task such as learning to stand.
When Lin began to practice standing and walking, the frequency of losing his
balance also increased, often in unpredictable patterns. As he described his standing
practice, he had no control when the tremors of his legs would come up. Because he
could not predict the tremors, nor consistently stop them from happening, he never
knew when he would be thrown off balance. Even though Lin had made a lot of
progress from his perspective, as well as from the perspective of his therapists, and
had gone from not being able to sit to being able to practice standing and walking,
his perspective regarding his body revealed a similar uncertainty as when he was not
even able to sit. While he gained more bodily control, he remained insecure and
uncertain of his body, two seemingly contrary feelings which appeared to be
The ever-present uncertainty and unpredictability of one’s body came not only
from a patient’s impaired ability to command his body, but also from the negative
feedback he received about his perceptions of his own body. This was particularly
relevant in therapy sessions in which Lin was constantly encouraged or pushed to the
capacities and limitations of his ability in doing therapeutic tasks
and of which the
goal was ironically to increase his confidence in controlling his own body. He was
always asked to do some bodily movement that he could not quite master and
therefore had to rely on others’ help to acquire the skills needed to master it.
In almost every movement Lin practiced, he usually received inconsistent
visceral feedback from his own body. He was rarely sure whether he was doing the
movement correctly without external feedback, such as others’ observation or a
reflection from a mirror, which usually proved more accurate than his own
perception. He asked the therapist or his caregiver constantly whether he had done
the movement right. It often happened that he might have felt that he performed the
In occupational therapy education I received, the optimal difficulty level in a therapeutic
activity is slightly above the person’s current ability in hope to challenge the person to realize his
movement correctly, but was told otherwise. It was as if his body had deceived him.
In a sense, the process of reclaiming his bodily control also meant experiencing the
uncertainty and ambiguity of his own body, distrusting his own bodily judgment,
and, however unwillingly, surrendering the authority he once had over his body to
Therapy is Pure Agony
No patients left the rehabilitation unit without going through countless
repetitions of therapeutic exercises prescribed by the therapists. In this process to
reclaim their bodies, they came face to face with their own inability to control their
bodies along with the physical exhaustion and agony that were imposed by the
therapy demands. In every occupational therapy session, Lin did strengthening
exercises for his body, arms, legs, trunk, et cetera. The forms of his exercises were
similar throughout the course of his rehabilitation with the number of repetitions
(sometimes up to hundreds) and the level of difficulties increasing as he made
Every repetitive movement challenged Lin to explore his limitations and
potential in terms of what his body could do and his ability to control it. For
example, Lin practiced sitting up for thirty minutes the first week. The next week he
had to sit up for one hour. Then he practiced sit down, and stand up, sit down again,
and stand up again. He practiced lifting weights with his legs, performing fifty
repetitions to start with and adding ten more with each day. Lin perceived the doing
of repetitions of tedious exercises prescribed by his therapists as the path to recovery.
I think rehabilitation is like … he (the therapist) says…that he can teach you
(to do well), but (you) have to receive (the teaching). I think that the patient
who receives gets better. There must be a cooperation between these two
persons. Otherwise, you (the patient) do not pay attention. I (the therapist)
teach you all I can, but it is useless if you do not receive. … Now I can do the
hand exercises one hundred repetitions in two minutes. … for real, and very
strong arms too.
Diligent repetitions of prescribed exercises are what Lin considered as proof
that he did indeed “receive the teaching of his therapists.” He considered the
progress he made on the unit a result of “cooperation between himself and the
therapist.” Throughout his therapy, Lin practiced the exercises prescribed by his
therapists countless times. Part of the “cooperation” meant continuing the exercise
despite the physical discomfort and fatigue inherent in doing repetitive strenuous
exercises and exerting oneself to an extreme degree in every repetition.
In therapy, Lin moaned and groaned. His face was often very tensed and tight,
screwing up in concentration on the task at hand (or pain). Every movement requires
a great deal of, “mind-over-body thinking,” and, “effortful mental striving.” That is,
directing his body with his mind (Akin, 1987; Dolittle, 1991). Every movement was
a potential to develop his strength, at least from the perspective of his family and his
therapists, but also, for Lin, a possibility for pain and exhaustion and a reality check
of his inability. For the patients on the rehabilitation unit, even though they make it
through many repetitions of such effortful mental striving, they still very often were
faced with the reality that they could not do the desired movement. “I just cannot do
it. I don’t have the strength,” Lin cried out in frustration when he could not keep his
hips steady in standing practice. Not only the physical exertion to do the exercises
was very exhausting, but also the process of repetitively facing one’s inability and
weakness was “very agonizing.” Lin said:
(when I practiced standing,) standing like this is very agonizing. Because, in
fact, when you stand like this, you have to, you use your brain to control,
(pause) like my brain is not injured. I want to control my body to right, to left,
but when you want it to left, it just does not listen to your commands.
It was not only the repetition of extreme efforts in doing the required movement
that was agony but also the inability to command his own body, frustration with
himself and with the body that “just does not listen to your commands,” the body
that he was once proud of its ability to do heavy work. Now he could not even will
his body to right or left. Along with having to constantly meet the demands of the
exercises and the often concurrent repetitive frustration, physical exhaustion and
agony became an experience Lin went through on a daily basis. “Pure agony” was a
phrase he returned to repeatedly when he talked about his therapy on the unit.
Doing rehabilitation was not only a challenge to Lin’s physical capacity, but
also to his mental capacity to endure this difficult time, in other words, how strong
he was mentally to take on the challenges inherent in having physical disabilities and
in handling the agony in rehabilitation. Many times in therapy when Lin was in pain
because of doing the exercises, he had limited control when the relief would come.
He described his therapy as:
Doing this (therapy) is like in agony. Yesterday I went down to work on my
shoulders. The pain was like taking my life. (wife interrupted and said the
exercises were to practice sitting up from lying down.) And I told Teacher
Xiao. He absolutely pretended not hear me. Totally ignored me.
Not only the therapist ignored Lin’s plea of pain, but his family also ignored it.
There was a concerted effort, at least from both therapists and caregivers that asked
the patients to endure the physical exhaustion and agony that came with
rehabilitation. As described earlier in this chapter, Mrs. Lin considered that
rehabilitation on KMH unit is better because it is compulsory. For Lin, not only it is
compulsory to do therapy, but it is also encouraged to reframe the physical pain that
becomes an anticipated part of this therapy as an inevitable path to recovery. It is
necessary to “tolerate” or “get through” the pain.
Reframing the Bodily Pain as Road to Progress
Throughout the process of rehabilitation, the idea of pain and suffering as an
inevitable process of rehabilitation and even as good for the patients were conveyed
to the patients and the caregivers in many locations and by different agents, fellow
patients, caregivers, and the rehabilitation staff. The therapists tried to educate the
patients and families that pain and physical discomfort were often part of the process
of doing rehabilitation. Most patients and their caregivers on the unit, especially
those who had been doing rehabilitation for some time, shared their rehabilitative
experiences with fellow patients and caregivers and in a way perpetuated this
practice of asking the patients to take on the challenge of the therapy and see the
physical exhaustion and pain as a path to recovery.
In the first few days of therapy when Lin underwent severe physical discomfort
as a result of his body adjusting to an upright position, Xiao, his therapist, repeatedly
addressed the issues of physical discomfort with Lin and his family. He wanted Lin
and his family to reframe the pain and suffering Lin went through as an inevitable
physiological process that Lin (and his family) had to overcome, to believe that the
physical discomfort would pass and lead to a better future in which Lin would be
able to sit again, if they were willing to work through the pain.
In Lin’s second physical therapy session in the therapy clinic, a family member
of other patients, who Lin did not know, stood close by and observed his therapy for
some time and gave some encouraging words: “Think of taking in all this torment
like taking in nutritious food that is good for your body.” Not only was pain thought
of as something that one had to endure as an inevitable process of therapy, but pain
was also reframed as nutrition that was good to health and recovery for the patient.
The caregiver of Lin’s roommate-patient, who was present in many of Lin’s therapy
sessions repeatedly told Lin, “The first week is the most difficult time. Bear it and it
will pass and get better.”
In essence, there was a prevalent assumption in the therapy clinics that
experiences such as pain, exhaustion, and agony that sometimes come with therapy
are to be perceived as an inevitable physiological process that the patients’ bodies
had to go through to get used to the work of rehabilitation, such as getting used to an
upright position and using one’s hands to bear one’s body weight. An emotional
aspect of one’s experience with body is thus legitimized as a physiological process
that can be objectified and manipulated, just like one’s body. The patients and
caregivers were also encouraged to conceive these demanding experiences as a
“nutritious food” for the sake of further recovery. To borrow Bourdieu’s socializing
theories in the legitimacy of doxa, new patients and caregivers are socialized into
accepting the legitimacy of these subjective experiences and these expectations as
part of doing rehabilitation (Bourdieu, 1977).
This chapter explores the experiences of the patients on the KMH rehabilitation
unit with a focus on how they perceived the therapy in the clinics. One of the goals
of rehabilitation for people with physical disabilities is to facilitate motor recovery
and thus reclaim confidence and independence in their abilities to control their body.
However, for the patients on the KMH rehabilitation unit, participation in therapy,
ironically, contributed to an intensified uncertainty and dependence on others
regarding their bodies. Such dependence and uncertainty is in line with a biomedical
perspective that sees the patient as a passive object and that strengthens the authority
of the rehabilitation staff over the patients’ bodies.
In doing the repetitive, physically demanding exercises and exerting oneself to
extreme degrees in every attempt, physical exhaustion, pain, and agony became to
some patients daily experiences of doing therapy in the clinics. However, these
subjective experiences were legitimized and reframed as a necessary path to recovery
and “nutritious food for future recovery.” What were intriguing were the patients’
and caregivers’ cooperation and acceptance of such means that led to the negative
experiences which seemed in many ways to undo the goals of rehabilitation – to
reclaim their bodily control and their confidence in themselves. This is explored in
the next chapter.
Chapter Nine “Tsau is Good, Tsau will Bring Recovery”
As described in the previous chapter, the severe physical demands of
therapeutic exercises that are geared to maximize patients’ potential often impose
great physical agony and can sometimes undo the goals of rehabilitation. The
prevalent thought on the unit was to ask that patients reframe the physical discomfort
as an inevitable, even beneficial, experience towards recovery. That being said, Lin’s
experiences may not be the most typical of the patients on the unit. However, every
patient had similar experiences to some extent, albeit, not as extreme as Lin’s
experience. Aspects of physical discomfort pertaining to the patients’ experiences
with rehabilitation on the KMH rehabilitation unit also broaches the question raised
in the literature review: Why do most patients desire more rehabilitation when so
many have dissatisfying, seemingly inconceivable, inhuman experiences with
The intent of this chapter is to question this experience and to explore the local
contextual factors on the unit and in Taiwanese culture at large that legitimized and
perpetuated such practice and experience of having to tolerate grueling physical and
mental demands in therapy. The question arises as to what made such a tough-love
relationship between patients and therapists not only acceptable but also at times
anticipated or even desirable? This chapter is an attempt to offer some plausible
explanations to these questions while drawing from my personal reflections on my
my years of experience practicing occupational therapy in
Taiwan, and a selective review of literature in traditional Taiwanese Chinese
The described experiences of the patients with rehabilitation, such as those of
Lin, so far cast the therapists as the villains. However, Lin’s therapist, Xiao, was a
well-respected senior therapist on the unit and many of his past patients would have
liked to have him again should they return to the unit for further rehabilitation. My
observations found his style to be a bit brash at times. A caregiver jokingly hailed
him as a retired mafia man recently released from being incarcerated for years.
Rarely was there a dull moment in watching him with his patients and caregivers.
When the patients were doing monotonous exercises in the therapeutic clinics, he
made jokes and engaged the caregivers and them in playful conversations. He was
also very proficient in providing hands-on therapy. I have seen many therapists and
supervised many students in fieldwork. Xiao, in my opinion, was a therapist capable
of handling almost any patient that came to him. What made his style of tough and
grueling drills on the patients desired by so many?
One possible answer is that a presumption exists that prejudges patients to be
lazy. This presumption is buttressed by therapists who are willing to enforce severe
drills to bring out the potential in patients. The following sections explore this notion
An examination of the National Thesis Database in Education in Taiwan did not reveal any
previous studies that used a qualitative method to explore the classroom experience. Therefore, to
ensure my interpretations of Taiwanese pedagogy and classroom experience are not a distorted
version, four Taiwanese teachers (one in middle school, one in cram school, two in an university
program (one of them was also an occupational therapist) read this chapter and all agree that my
interpretations are in line with their experiences.
and also describe how traditional Chinese educational philosophy and classroom
practice were incorporated into the biomedical-dominated clinics. A preliminary
exploration of Taiwanese pedagogy and educational philosophy show that they were
influential in structuring patients’ experiences with therapy and sometimes led to
conflict. The last section discusses how therapists and patients perceive the tough-
“He (the Patient) Is Lazy. He Needs to Be Drilled Hard.”
The attitudes of caregivers played a very important role in the extent to which
patients exerted themselves in therapy. Most caregivers shared the assumption that
the more therapy and the stricter the therapist the better the results. They brought
their patients to the clinics as soon as it opened and stayed until it closed for breaks.
Even when patients complained about the demands of therapy and wished to
discontinue, few caregivers would give in without first trying to encourage them to
continue. There was a sense of urgency in ensuring maximal participation in therapy
because of the limited time patients had on the unit. Sometimes only when patients
physically broke down from therapy, collapsing or spraining a joint from overuse,
would caregivers or therapists concede that the patient could not physically handle
the demands of therapy any more.
According to the narratives of Chen and his personal attendant, Ms. Huang,
during one of Chen’s early occupational therapy sessions, he was put on a standing
frame, which he jokingly called a “punishment table,” to help him practice standing.
He was getting very tired after a while and asked that he be allowed to sit down. Mrs.
Huang, although very suspicious of his claim, brought his concern to his therapist.
They both agreed that mere standing should not tire him out. They wanted Chen to
stand a bit longer and did not help him down to his wheelchair. A few minutes later
Chen passed out.
Chen’s perceived exertion during the exercise did not align with his caregiver
and therapist’s expectation of the difficulty of the exercise. Patients sometimes
complained that the caregivers and therapists underestimated how difficult or taxing
the exercises were to them. If the patients showed less than desired enthusiasm in
therapy and a reluctance to continue in therapy, they were often presumed to be lazy
and in need of encouragement and coercion. Chen’s claim of fatigue from “mere
standing” was mistaken as a sign of his wanting to take it easy, which was not
acceptable to Ms. Huang and his therapist. They deemed it their responsibility to
bring out Chen’s potential and to make sure that Chen was really putting forth his
best effort. Their authority, particularly the therapist’s, always overrode Chen’s own
desire. The compulsory and painful nature of this activity was probably the reason
why Chen called it a “punishment table.” The incident did not change Ms. Huang’s
presumption of the patients being lazy. By the end of Chen’s stay on the KMH
rehabilitation unit, she still said that Chen “could be very lazy” and, therefore,
needed a carrot-and-stick strategy to maximize his participation in therapy. She
You know, he is like a child now. He could be very lazy if you let him. So you
have to encourage him a lot, sometimes you also have to threaten him to keep
The presumption of being “lazy” in part contributed to the transformation of
physiological problems into moral issues, another presumption that was also
prevalent on the unit. When Lin could not perform a certain movement, his family
often attributed the cause not to his neurological damages that resulted in his
weakness but to his not working hard enough. Even though some patients and
caregivers had experienced the negative consequences of linking recovery to being
hard working, their behaviors sometimes still reflected such presumptions. For
example, Kuo, in one of her treatment sessions, was afraid of losing her balance
during a standing exercise and was very hesitant to swing her hips from side to side
per her husband’s instructions. Mr. Kuo became increasingly impatient and
eventually burst out, “You are not working hard enough. What are you afraid of? It is
your fear that you cannot do this!” He walked off despite the deep regret he had
repeatedly expressed about a similar previous incident that had ended unfortunately.
A few weeks earlier, Kuo had suffered a severe muscle sprain from overuse when
Mr. Kuo was assisting her in her climbing stairs practice. Mr. Kuo felt that the
accident was because he had pushed Kuo too hard to practice walking. “Eat too fast
and break the bowl,”
was what he said of his attempt to want to help Kao to a
In summary, caregivers presumed (a) that patients “could be lazy” if they were
allowed to be themselves, (b) that when there was a lack of desired performance, it
吃緊弄 破碗 (Ch ī jyîn nzhòng pwò wûo), a Taiwanese slang that describes the haste of a
person who rushes to eat, ends up breaking the bowl, and therefore has nothing to eat.
was because patients were “lazy” and “afraid” to do the exercises, and (c) that
patients were “like children” that needed to be “encouraged or threatened” in order to
“keep them going” and in order to “work them hard” toward recovery. The
responsibility as such fell on caregivers and therapists to not let patients be lazy and
to provide the external incentives to motivate them to be their best. Even therapists
sometimes exhibited such presumptions. For example, Xiao had several times, albeit
jokingly, told Lin to stop complaining about not having enough strength and that he
must work harder to get his movement back.
In one treatment session, Xiao worked with Lin to practice his body control in
the hands-and-knees position. Lin was asked to keep his pelvis steady, not swing
from side to side and not to make any jerky movements during the exercise. After
numerous repetitions, Lin still could not keep his pelvis steady. He could not even
tell whether his hips were swinging from side to side. Lin was getting frustrated and
said, “I just cannot do it. I do not have the strength.” Xiao mockingly retorted, “What
do you mean by no strength? You did not work hard enough.” This short exchange
reveals that while patients attributed their inability to produce certain movements to
physiological impairments, therapists as well as caregivers often thought otherwise.
They assumed that persistent and industrious practice would enable patients to
overcome their physiological damage and resume control of their bodies. Lin’s
inability to keep his pelvis steady was not innate but because he was not willing to
work hard enough. Therapists and caregivers transformed the patients’ lack of
performance into an issue of weak morale and determination, and did not attribute it
to a physiological pathology that led to their inability to control their bodies in the
first place. This transformation of the physical issue and the presumed weak morale
of the patients supported the need for a therapist who was tough and able to drill
patients to overcome their fear and “laziness” to bring about recovery.
Along with legitimizing physical agony to an experience that patients had to go
through as a natural part of therapy, even beneficial to further recovery, the
preconception of the laziness of patients and their needs for encouragement or
coercion to fully participate in therapy supported the needs of a tough-love therapy
and a therapist who is willing to “drill the patients hard.” Literature in medical
anthropology has explored similar “tough love” approaches of the health
professionals to change a patient’s behavior on the chronic pain and addition units
(Frankel, 1989; Jackson, 2000, p. 71). The studies reported that the staff considered
such an externally imposed discipline of following the schedules and observing the
rules of a clinical setting, however unpleasant for the patient, as one of the key
factors in effectively changing a patients’ undesirable or self-destructive behaviors.
However, for the patients who recently experienced a life-threatening
debilitating disease on the rehabilitation unit, the tough-love approach took a
different turn. On the units for patients with chronic pain or additions problems, for
which biomedicine can not provide an adequate explanation and therefore are often
assumed to be “psychological” in nature, staff considered that most of the physical
and emotional suffering patients went through was at least partly self-inflicted and
thus required self discipline to rid oneself of the suffering. For the patients on the
KMH rehabilitation unit, their illnesses had a physiological explanation and their
pain and physical exhaustion were not only from the process of adjusting to major
physiological changes in their bodies but also were from the sometimes severe
physical and mental demands imposed on them by the therapists in doing therapy on
The Need for A Tough Therapist
A preliminary understanding of teacher-student relationship in Taiwan is
essential here because the therapeutic relationship between therapists and patients on
the KMH rehabilitation unit was framed as a pedagogic relationship between
teachers and students. Therefore, a selective review of Taiwanese classroom culture,
particularly the pedagogic relationship and educational philosophy that shares similar
characteristics with the therapist-patient relationship on the KMH unit, merits some
discussion here to illuminate the tough-love approach to the therapeutic relationship
between therapist and patient on the unit.
On the unit, the patients and caregivers address the therapists as Teacher.
designation contributed to the casting of therapeutic relations into a pedagogical one
between teachers and students. Metaphors associated with learning and teaching
were often used in the clinics to describe experiences with rehabilitation. Patients
referred to themselves as students, those patients who were admitted to the unit
during the same period were referred to as their classmates, and discharge was
It is a custom in rehabilitation in Taiwan that the therapists are addressed as Teacher. For
example, Xiao was addressed as Teacher Xiao by patients, caregivers, and rehabilitation staff on the
considered graduation from rehabilitation. One of the frequently heard forms of
encouragement offered to the new patients was to “Earnest in learning from your
teachers.” In other words, patients were encouraged to perceive themselves as
students to “receive the teaching of the teachers (i.e., the therapists)” and the degree
of progress as a “score” on an examination for which they had worked very hard, as
Lin had said (discussed in details in the previous chapter).
Incorporation of Traditional Chinese Educational Philosophy into Rehabilitation
In this section, the use of a few very popular cultural idioms that indicate
Chinese pedagogy are used to introduce some of the beliefs and philosophies of
Confucian-based Chinese classroom culture. Many of these idioms came from
ancient Chinese folk stories of renowned people, some from humble origins, who
had emerged out of a long and persistent hard study and became successful. The
stories are embedded with a deep-rooted Confucian ideology that shapes the
educational philosophy of traditional Chinese classroom culture (Hwang, 2001).
Following is an idiom that tells the story of a renowned scholar in Chinese
history who “shí nián hán chu āng kŭ dú ( 十年寒窗苦讀),” meaning that he had
studied very hard in a very desolate environment for ten years and later became a
renowned scholar (The Online Dictionary of Chinese Idioms by Bureau of
Education, Taiwan). The key word I wish to focus on here is k ŭ, a descriptor to
describe the effort one puts into study. The dictionary meanings for k ŭ indicate a
heavy, almost unbearable, extreme, difficult, and hard-on-spirits-and-minds
circumstance. For example, when a person is to “eat ku (吃苦),” it is meant that he is
to confront a harsh prolonged drudgery and then to emerge from the experience as a
better person (The online Chinese Dictionary by Bureau of Education, Taiwan). Ku
in that sense also refers to the toil one puts in to overcoming any hardship that comes
in one’s way. In other words, “shí nián hán chu āng k ŭ dú( 十年寒窗苦讀) ” implies
that only when one has studied under such k ŭ circumstances with such a resolute
attitude for a prolonged period of time can he accomplish the state. The idiom
imparts a Confucian-based belief that learning is the way to success (and for many in
the lower socioeconomic class, the only way) and education requires hard work and
perseverance. It can also be said that the process of education is not supposed to be
enjoyable, that there is not to be instant gratification. The pleasure derives from the
long-term outcome of education – becoming an accomplished scholar with high
social status (Leung, 2001).
Another Chinese idiom more graphically depicts education as welding ore into
steel. “Loath the ore that is not hardened into steel ( 恨鐵不成鋼 , hèn ti ĕ bù chéng
gāng)” is an idiom that describes the severe disappointment of a teacher to see the
student who fails to fulfill his potential. To educate is to weld ore into steel. The
student is the ore and is expected to go through a grueling drill (high heat and
repeated welding) that, although painful and excruciating,
will transform him into
There are many, many Chinese historical stories that emphasize the association of pain,
learning, and achievement. To name two. There was a renowned scholar who jabbed himself with
needles to keep himself awake at nights to study before he achieved success. There was also an
emperor who in captivity slept on brushwood and tasted bitter gallbladders (literally eat k ŭ ) every day
to remind himself of the shame of losing his country. He later revenged his enemy and won back his
steel, something worthy and valued. A teacher can be thought of as an iron-master
who fuels the furnace, welds the sledge, and manipulates raw ore into steel polished
and worthy. Therefore, the teacher must not be idle but must work equally as hard as
his students as the saying goes: ‘If the teaching is not severe and strict, it is the
slothness of the teacher ( 教不嚴, 師之惰, jy īao pwù yán sh ī zh ī dwùo).” He bears
the enormous responsibility of making certain his students fulfill their potential
(transform from ore to steel). His teaching is intense like high heat and repeated
welding that will form the students.
Another key characteristic of the Chinese classroom culture is the authority of
the teacher over the student. A Confucian ideology dictates respect for elders and
adherence to authority. The classroom is no exception. Teachers have received
reverence and been given a relatively high social status in traditional Chinese society.
In traditional culture, they are juxtaposed with the Heaven, the Earth, the Emperor,
and the parent. The saying of “one day thy teacher, thy father for life ( 一日為師、
終生為父, yí rì wéi sh ī zh ōng sh ēng wéi fwù)” reinforces the expectation that
students pay fatherly respect to their teacher (Hwang, 2001). In summary, the
Confucian-based beliefs of education discussed to this point are as follows: the
characteristics of education are (a) the power of education and learning to empower
self transformation and redemption, (b) limited short-term gratification but always
hard work and perseverance, similar to the process of welding ore into steel, (c) the
expectation of students to venerate their teachers and to endure the intensive welding
process of education, and (d) the expectation of the teacher to be authoritative and
strict and severe with their teaching as well as to take on the responsibility of
transforming their students into accomplished scholars.
An understanding of a specific tough-love teaching strategy – Tsau ( 操) –
frequently used to describe the grueling demands of the therapy on the unit is
explained here to shed light on the seemingly inconceivable acceptance of such
tough love approach on the unit. According to the Online Dictionary by the Bureau
of Education, Taiwan, the meanings of Tsau as it relates to education refer to the
possession of a moral virtue, such as used in the description of a person with “tsau
behaviors,” or an exercise that improves and challenges physical capacity. Tsau also
means to challenge a person’s perseverance, such as “tsau his strength and morale
with adversities”. On the surface, tsau is more closely linked to physical challenge,
but the multiple semantic meanings of tsau allow for interpretations of a morale
virtue of the ability to endure hardship.
In education, tsau refers to the imposition of severe physical demands on the
students via use of relentless physical discipline or drill to bring out the best in a
student, especially his physical capacity and morale in order to endure hardship (like
high heat and repeated welding to turn ore into steel).
This technique is frequently
In classroom settings, tsau is a popular teaching strategy but also sometimes controversial
because of its blurry boundary with corporal punishment. It is sometimes difficult to distinguish the
two because both impose severe demands on students. When a student who had failed to recite a
poem was asked to write the poem a hundred times to the point of utter exhaustion, was it an attempt
to tsau the strength of the student so he could memorize the poem by heart or a punishment? In most
classrooms, corporal punishment within the degree of “no physical harm done” as a disciplinary
means to ensure the students’ learning was considered legitimate and regularly used. During my years
in grade and junior high schools, physical punishment was frequently used as a disciplinary method.
But I want to emphasize here that this is no longer the case. Nowadays if a teacher uses excessive
used in military training or in physical education classes. For example, in military
training school, cadets are tsau-ed through relentless and harsh physical training to
strengthen their physical and mental capacity. Tsau as a teaching strategy is in line
with the Confucian educational philosophy that the teacher is to be strict and severe,
that education is hard work and demands perseverance, and that pain and exhaustion
are a necessary part of the learning experience.
On the KMH rehabilitation unit, tsau was frequently used to describe the
patient’s experience with therapy, particularly doing repetitions of arduous
therapeutic regimes. For example, when the patient just had a very intensive and
grueling therapy, they said that they had been tsau-ed by their therapists. When the
caregivers wanted the therapists to challenge the patient, they said “Just get him tsau-
ed,” or “this patient needs to be tsau-ed,” et cetera. In these circumstances, there was
nothing else to say, the therapist, the caregiver, the patients, and the I-researcher all
understood the meaning and the experience associated with tsau in therapy. In
another word, the frequent use of tsau to describe the therapy reflects the shared
cultural experiences and expectation of physical agony and bodily pain in severe
physical drills with those of the repetitive exercises in the therapy clinics. The patient
as a student was expected to participate and did participate in, however reluctant they
might be, the grueling exercises that were to help them get better. Along with the
presumption of the patients’ being lazy and needing external incentives to work hard,
the therapist as a teacher was expected to “give the patient a tsau,” to challenge the
force, parents protest and there may be extensive media coverage.
patient/student physically and mentally to bring out their best via intensive exercises.
Doing therapy was often described as “to eat Ku,” revealing the expectation that
patients consider the hardship from tsau that will bring about their redemption.
Lin’s mother and wife very explicitly expressed their desires for this tough love
approach and their wish for a tough therapist. They repeatedly in front of Lin and his
therapists said: “he is very lazy and needed to be tsau-ed.” They wanted Lin to be
drilled rigorously, and the therapists to be tough on Lin, even when he was very
depressed by his disease and exerted very little effort in therapy.
Some caregivers also encouraged therapists who showed reservation in
imposing too great a physical stress on their patients to be tough in therapy. The
caregivers asked the therapists to work the patient hard, not to worry about the
possibility of therapy being painful for patient, and encourage the patient to continue
in therapy as long as the therapist asked them to keep going. For example, Deng was
a child with a head injury. In therapy, he was regularly put in a kneeling-on-hands-
and-knees position which seemed to distress him very much because he was always
crying incessantly. At one time, his therapist was puzzled about why Deng’s back
was still hunched in such a position, a sign of hyperactive muscle tone that they
wished to correct.
Mrs. Deng: “his physical therapist always pushes down his back with
Lin was very depressed at that time and made minimal effort in therapy. He told me later:
“You know, I did not care that much at that time. I don’t want to do anything. They could do whatever
they wanted TO me. I was not going to do it.”
The therapist: “It hurts more that way.”
Mrs. Deng: “if it hurts, it hurts.”
The therapist started pushing Deng’s back down. Mrs. Deng was willing to
increase Deng’s physical distress because she had seen the other therapist effectively
use the approach of “push down his back forcefully” to reach their desired goal, even
though this approach might increase physical pain. She urged the reluctant therapist
to use this similar forceful technique. Despite the therapist’s reservation to increase
the pain, she considered this subjective experience as something that could be
ignored and dealt with, “if it hurts, it hurts.” Pain and physical exhaustion was
legitimized as a routine experience of rehabilitation, as a “natural” part of therapy
that would help patients get better and lead to a better future. Therapists were
expected to give patients a tsau.
In sum, the patients’ rehabilitative experience marked with strenuous physical
drills and physical agony and the therapists’ tough-love approach in pushing the
patients to their utter limits are then understandable in such a local context in which
Confucian educational philosophy pervades the therapy clinics. The general approval
or even desire of a tough therapist who places severe physical demands on the
patients when the intention is to realize the patient’s potential, even though the
demands seem like physical punishment, is in line with the presumed acceptable
I want to stress that the quality and expectation of what a good teacher is and how
discipline should be enforced in classrooms has undergone great changes in the last decade, such as
the growing disagreement with the notion of “the stricter the teacher the better” and the perception of
physical punishment as legitimate disciplinary method. But I think that a review of the traditional
teacher-student relationship is still relevant here. Because the patients and caregivers on the unit were,
like myself, educated in traditional classrooms and thus familiar with the customs and values
means a teacher can use to realize his students’ potential by Taiwanese teaching
The Toughest Therapist
The teacher who is strict and severe can produce accomplished students巖師出
高徒(yán sh ī ch ū gāu tú).
If the teaching is not severe and strict, it is the slothness of the teacher ( 教不
嚴、師之惰, jy īao pwù yán sh ī zh ī dwùo).
The expectation that therapists drill their patients with strenuous exercises,
challenge their capacity to maximize their potential, at least in physical abilities such
as motor control and muscle strength, made the “toughest” therapist desirable,
particularly from the caregivers’ perspectives. The following exchange between Lin,
his wife, and Xiao in their second therapy session revealed Lin and his wife’s
expectation of the therapist and the therapeutic relationship they wanted.
Lin told Xiao: “I heard that you are the teacher who tsau the students most on
Xiao made no response.
Mrs. Lin: “the most tsau means the best. … To work him hard is good. Only
tsau will bring recovery. This lazy student needs to be tsau-ed.”
Lin wanted to validate what they had heard from other patients and caregivers
about Xiao’s therapeutic style. He was not sure at this point whether he wanted a
tough therapist, particularly after the grueling therapy session he went through the
day before. Xiao did not agree with the comments nor did he deny them. Mrs. Lin
immediately voiced her agreement with the tsau approach and her expectation of
associated with the traditional teacher-student relationship. The nature of the traditional Taiwanese
pedagogical relationship and of the therapeutic relationship on the unit shared many similarities.
Lin’s needs, “this lazy student needs to be tsau-ed, ” because of her belief in the
causal relation between tsau and recovery, “only tsau will bring recovery.” Therefore,
she was happy that Xiao was assigned to Lin as his therapist because he was said to
be the toughest and most aggressive therapist on the unit, “the most tsau means the
Despite the spoken words and desires, Lin’s family at the beginning was
hesitant in regard to Xiao’s aggressive approach and very anxious about Lin’s ability
to tolerate therapy. They did not openly disagree with Xiao but, in Lin’s first two
therapy sessions of sitting practice, they stayed right close to him, with hands out as
if ready to pick him up if he fainted or fell to the floor. They did not encourage Lin’s
participation when Lin declined therapy.
Other than the cultural acceptance of the tough love approach described above
and the approving remarks by fellow patients and caregivers regarding Xiao’s
competence, I believed that it was also Xiao’s confidence in Lin’s ability and his
success in bringing out Lin’s potential that eventually convinced Lin’s families of the
success of the aggressive approach. They had not anticipated Lin being able to sit up
but Xiao had done it twice by keeping Lin sitting up for thirty minutes, which not
only supported the endorsement of fellow patients and caregivers about Xiao’s
capacity as a very good therapist but also validated their presumption of “only tsau
will bring recovery.”
After the first two therapies, Lin’s family got him ready for therapy and
encouraged or coerced him to continue therapy despite his lame protest and
“physical agony.” They also later on many occasions recommended Xiao to other
patients and caregivers and expressed their satisfaction with Xiao because he was
said to be “the therapist who tsau their students most on the clinic” and “what he did
(with Lin) was based on profound knowledge.” In other words, because Xiao gave
Lin physical drills and brought out Lin’s potential by his exercises, he was deemed
not only a competent but also the best therapist.
Xiao did not refute the idea of his being tough and recognized that his therapy
challenged his patients. He saw himself give his patients opportunities they did not
have with their caregivers, opportunities that challenged their potential to recover
their damaged bodies. Xiao said:
I spend a lot of time observing my patients, observing what they can do. …
When a new patient comes in. I almost always try (the patient’s ability) first,
even if he is a CVA patient and he cannot stand. I will try (to let him stand)
first. To encourage him to present this ability. Sometimes he is not necessarily
unable to stand. Sometimes he is afraid. Sometimes it is family who does not
know how to handle. And we know how to handle, so we try and his ability
can be very easily found out (in these trials).
Xiao considered the exercise regime that he methodologically prescribed for his
patients as opportunities that enabled them to reveal their potential. Because as a
therapist, he “knows how to handle” and how to “try the patient” more than the
caregiver who “does not know how to handle.” He believed he was able to create
opportunities that “encouraged his patients to present their abilities,” the abilities that
he as a therapist believed the patients had but were dormant because of the lack of
opportunities or fear of falling.
Xiao was also aware that the severe physical exercises he put his patients
through sometimes resulted in physical pain which he carefully monitored and
sometimes selectively ignored. For example, Xiao was not as oblivious to Lin’s
frequent incidences of painful experiences in therapy as Lin had claimed that Xiao
“absolutely pretended not hear me. Totally ignored me.” He observed Lin’s sweating
and his agony when he first learned to sit. He noted Lin’s pain when he practiced
sitting with both arms at his sides as support.
Sometimes there are several kinds of pain (patients experience). I will observe.
If it is what he should experience (with the therapy) … then I don’t
intervene. … If this pain will not cause any further harm, in fact I feel that he
should be able to tolerate, that is good for him. … I am constantly watching. …
I was watching him at that time. … SCI patients when they do therapy with
their hands, there will be injury. In fact, nine and half out of ten do. He needs
to practice push, or practice many exercises that will use his hands. Because
his hands had never experienced such loading before, and all of a sudden we
put such loading (his weight) on his hands, there will be injury. … But I will
be very attentive. I will not let him focus on this. But I am aware of it and I
keep it in my mind. … If it is only going to hurt a few times, then I will
probably let him work through it.
Xiao did not ignore Lin’s pain as the latter had believed. On the contrary, Xiao
was “attentive, watchful, observant.” He made a conscientious choice in terms of
how he handled patients’ subjective complaints based on his professional experience
of working with many patients with similar disabilities that had gone through the
same process, “nine and half out of ten do (experience injuries or pain).” He
explained the nature of the exercises to his patients. He reframed the physical
discomfort as an inevitable process of Lin’s body getting used to rehabilitation and
disability. But he did not discontinue the source of physical discomfort – the
exercises. He believed that under careful monitoring to avoid further harm,
overcoming physical pain was good for the patients. “It was good for him.” To Xiao,
pain was a distraction to therapy and that he “will not let Lin focus” and expected
Lin to “work through the pain.”
The Legitimization of the Tough-Love Approach
Lin did not take the idea of tough love easily in the beginning. He had resisted
the imposed severe demands of therapy, although his resistance in the form of poor
compliance came more from a lack of hope for the future, “I was like a dead person.
… they (the therapists) can do whatever they wanted to me. I was not going to do it.”
His resistance did not succeed in terms of getting himself out of therapy. The cultural
expectation of tsau being good to his recovery was repeated to him not only by his
family but also by some didactic fellow patients and caregivers, such as “eat k ŭ
liking eating nutritious food (for recovery).” The message was that he was expected
to meet the rigorous physical and mental demands that came with his therapy, even
when he felt that he could not endure it any longer. One day, Lin and his wife
described his therapy on the previous day to me.
Lin: My hands hurt so much (from doing the exercises) and I told him
(the therapist). He absolutely pretended not hear me. Totally
Wife: Pain will bring recovery. Teacher Xiao thinks that he can do it.
He just has to endure it.
Lin: By the end I could not handle it anymore. I told her (the wife) go
talk to Teacher Xiao and I really cannot endure it for any more
minutes. What can you do when you cannot endure it anymore?
You just endure it, what else can you do? If I were the me
before (the accident). I would have hit him really hard.
There was a deep sense of powerlessness in the inability to change one’s
predicament in this short exchange. Lin was complaining of the severe demands of
therapy. He relied on his family to help him out of the painful position or discontinue
the therapy. But over and over again, his family, who were firm believers in the
causal relation of tsau and recovery, refused to offer the kind of help he wanted. They
got him ready for therapy despite his reluctance. They did not go to his therapist as
he had requested them to do to relieve him from the painful posture. Instead, they
snubbed Lin for being lazy, not being able to take the pain, for not believing in
himself as his therapist and family believed that he could have done the therapy if
only he were willing to bear the pain.
His therapists also did not let Lin’s reluctance get him out of therapy. They
came up to his room to provide therapy since he did not go down to the clinics. They
selectively ignored Lin’s requests to discontinue the therapy, “he (the therapist)
absolutely pretended not hear me. Totally ignored me.” When Lin experienced pain
from therapy, both his therapists and his family made him to continue the therapy by
ignoring his complaints and asked him to consider his bodily pain as beneficial to his
recovery, “pain will bring recovery.” Lin, being unable to get out of therapy by
himself, was aware of his powerlessness and knew that he had to do the therapy,
there was nothing else he could do. “What can you do when you cannot endure it
anymore? You just endure it, what else can you do?”
Lin felt the pain and was fully aware that an emotional outburst, particularly in
desperation, was not encouraged. After a session of experiencing great pain with
practicing the long-sitting exercise with his body weight bearing down on his hands
and a delayed relief mentioned above, Lin told a fellow caregiver next to him whose
child (Deng) was wailing incessantly: “I wish to cry very much but dare not cry.” Lin
knew that he was not a child anymore and had lost the right to cry like Deng was
able to in order to protest the therapy. He knew that he was expected to endure the
physical agony and get on with the exercises. He “dared not cry” to reveal his
emotional responses to his disabilities, his resentment to the roughness of the
Lin’s experience of “fatigue and pain being ignored” and “pushed over physical
limit” was very common from my observation of rehabilitation therapy in the clinics.
Reviewing my field notes, there was rarely an observation that went by without
noting a particular patient who physically or verbally expressed their pain and
exhaustion. But some were attended to, but others it appeared to me, were
intentionally ignored by their therapists or caregivers. There was a concerted effort
among fellow patients, caregivers, and therapists to instill upon patients the
legitimacy of tough love or tsau approach and to reframe these severe physical
demands from therapy as “a nutritious food for recovery.” The attitudes of both the
caregivers and therapists suggests that the lack of a patient’s enthusiasm with therapy
or the inability to take on the challenge given by therapists was perceived to be due
to laziness on the part of the patient and his attitude of not wanting to get better. This
reinforced and sustained the tough-love approach. These practices in a way
effectively silenced most of Lin’s complaints and facilitated his acceptance of the
tsau approach in therapy and the associated physical anguish.
Although much of the physical anguish Lin experienced was imposed by the
demands of therapy, one might imagine that he would have objected to the tough
love approach. However, with an appreciation of the Confucian educational values
and beliefs Lin was acculturated into, he was understandably ambivalent about the
practice of always taxing him to the edge of utter exhaustion. He complained about
the physical agony he experienced every day but at the same time he wanted a tough
therapist. He never told any therapists of his one-eye blindness because “they do not
need to know. They would only cut some slack for me. Stricter is better.” He wanted
his therapists to work him hard as well.
By the end of his stay, Lin considered himself lucky to have “the best (for him,
it meant toughest) therapists in both occupational therapy and physical therapy” who
helped him to walk. Of all the rehabilitation staff members that he worked with, he
was most pleased with Xiao and had the most confidence in him. Lin was so
convinced of the effectiveness of his therapy, that at one point he considered the first
few weeks when he was too depressed to participate in therapy as a time that was
wasted. He felt that if he had worked hard in the beginning, he might have made
more progress. He also became an active participant in the perpetuation of tough-
love approach. He voluntarily shared his experiences with other patients and
caregivers, expressed his satisfaction with therapy, and encouraged them to consider
the physical agony as a nutritious food for recovery.
Bourdieu’s (1977) socialization theory of habitus and disposition is useful here
to illuminate Lin’s and his family’s acceptance of the tough love approach on the
unit. Bourdieu use habitus and disposition to explain how a value or belief is
inculcated into individuals socializing into a group and perpetuates itself in the
group. Habitus is a system of “durable and transportable disposition” (Bourdieu, p.
72) because it structures the individual members’ behaviors, while leaving room for
individualistic creativity and improvisation to adapt to varying conditions. The
individual’s practice and acceptance of the disposition in turn perpetuates the
disposition. The habitus indicates the sense of limits that tells what is right and
proper, which in reality is arbitrary but misrecognized as natural. This
“misrecognition of arbitrariness” is the doxa, the reality that “goes without saying
because it comes without saying” (Bourdien, p. 167).
When Lin and his family came to the KMH rehabilitation unit, the habitus of
the rehabilitation unit “inculcated” in the earliest time they had with the group. They
learned of the importance of the therapy and compliance with therapy via many
means, for example, the emphasis in their orientation on keeping their therapy
schedule. Equally important is that the habitus such as the legitimacy of the tough
love approach was “constantly reinforced by calls to order from the group”
(Bourdieu, 1977, p. 15), when Lin and his family seemed to disagree or become
skeptical. With the frequent feedback of the rehabilitation staff, the other patients,
and the caregivers throughout his stay on the unit, emphasizing what doing
rehabilitation should be like, Lin came to accept the tough-love approach as just and
proper, as his family had done before him. The patient was expected, for the sake of
progress and a better future, to use the disciplinary power described in the previous
chapter to observe, manipulate, and interpret their experiences with their bodies.
They had to be strong and perseverant in taking on the extreme physical demands
placed on body and mind. The issue of physical recovery is transformed into a moral
crusade. If a patient wants more physical recovery, the patient had to desire the
The Young/Minor and Yet Authoritative Therapist
In this last section of the chapter, issues of authority and power in the
therapeutic relationship in the clinics are discussed. The combining effects of a
biomedical ideology and Confusion-based pedagogy in terms of the therapists’
authority are first reviewed. Next I will look at how traditional Chinese values of
reverence for elders and life experience impacts on the authority of usually younger
therapists, and how this impact is manifested in a specific interpersonal style that is
fairly characteristic of Xiao and a few other therapists. The therapists sometimes
demonstrated what appeared to be a sense of disrespect that resulted in
characterizing the patients as inferior and minor and causing emotional distress for
As discussed in Chapter Three, rehabilitation is often considered to be
marginalized by mainstream biomedicine. It is no exception in Taiwan. The KMH
rehabilitation program is an example. The unit occupied an insignificant area of the
medical complex and its budget lagged in the hospital administration priority
(according to one of the physiatrists). However, as rehabilitation is dominated by
biomedicine, the therapeutic relationship between therapists and patients still shared
the similar power differentiation observed in biomedical professionals in relation to
their patients. Therefore, augmented by the status given by traditional Chinese
pedagogy to a teacher, therapists’ authority in terms of therapy was well established
in the clinics by their being considered both a teacher and a medical professional.
However, therapists’ authority was sometimes implicated by other cultural
values that strengthen the authority in the first place. The Teacher revered in
traditional Chinese culture is – in comparison to his students – in general much older,
with more life experiences, with moral superiority, and with higher social status. We
can say that the reverence a teacher receives comes not only from being a teacher but
also by being an elder, one who has in tradition occupied the position of respect and
authority. However, the therapists in the therapy clinics – in comparison to their
patients – were in general much younger, with less life experience, and not
necessarily with higher social status than some of their patients who had enjoyed a
life of success in their careers, et cetera.
Therefore, taking into consideration biomedical ideology in regard to therapists
and Taiwanese cultural values about the teacher as elder, a paradox exists when the
therapist/teacher is superior and authoritative and at the same time younger and
socially inferior. Nevertheless, their older patients were expected to submit to the
position of passivity and inferiority when it came to his body and medical care on the
unit. They were expected to be bereft of their social status because “every body is the
same,” as one physiatrist had said.
Many patients and caregivers compliantly respected their therapists’ authority
and rarely questioned the exercises the therapists prescribed nor the manner in which
it was delivered. I rarely heard any patient or caregiver complain of the therapist
being rough or disrespectful. Lin and Chu however are among the few exceptions
who had several times explicitly acted out their resistance to this imposed
Lin who considered himself older and with more life experience than his
therapists, seemed to more acutely feel this imposed diminished status, particularly
when his therapists derided him of his inabilities to move himself or his low morale
to tolerate the therapies that were imposed on him with the tough-love approach,
which he did not yet wholeheartedly embrace.
In one treatment session, Lin was lying on a mat resting and Xiao asked Lin to
move over to make room for another therapist. Xiao jokingly said: “Hey. Don’t lie
there like a dead pig. Move over.” Lin did not respond (I could not see his facial
expression from where I sat). The caregiver of Lin’s roommate patient said: “why
don’t you tell him that I don’t want to be a dead pig either.” Lin did not respond to
Xiao’s joke of his being “a dead pig,” probably because he felt powerless lying there,
unable to move himself, feeling really “like a dead pig.” Even though the situation
was not his choice, he had no control. In other circumstances, Lin was more
expressive about his displeasures of the occasional deriding remarks from others.
When I first came here and they (the therapists) asked me to do things. I was
too lazy to attend to them. For real. They are younger in ages than me. Ask me
It should be noted here that there were some other patients who resisted therapy; however,
I did not know those patients well enough to interpret their resistance with confidence.
to do things. … I owned a business before. I was, I was ordering others around.
Scold others. I now come here to let you (referring to his therapists) scold at
Teacher Xiao is like … if I stopped for a moment, he came and slapped my
head and said, dead monkey kid why aren’t you working hard? … if I talk (to
others) a little longer, he slap my head. … You know, I am a thirty-six year old
man and these therapists, they, they are all younger than me, and come in, and
come in to tell me what to do, to slap my head, if it had happened before (the
accident), I would have hit him really hard.
In the statement, Lin told of his anger towards not only Xiao’s deliberate
ignorance of his plea of discontinuing the exercise but also his mocking attitudes of
disrespect. Being used to being a person who had bossed others around, had more
life experiences, and was older than all the therapists on the unit, Lin felt humiliated
and angry when he was treated in a child-like way, when he was “ordered around”
and “scolded.” He now had to be watched all the time, could not take breaks
whenever he wanted to, had to listen to what the therapists “tell him what to do,” got
slapped on his head, and was called “dead monkey kid (a slang for a naughty kid)”
when he failed to follow instructions. For Lin, Xiao’s attitudes intensified the
negative experience of having a debilitating illness, his not only losing his bodily
control but also his social status.
Lin was aware of the power relation between a patient and a therapist on the
unit that put the patient in a socially inferior position of being a student. So there was
nothing he could do, even though he “would have hit him (the therapist) really hard”
if he were not paralyzed and needed his help. He complained of Xiao’s attitudes to
his family but I had not observed his acting out his displeasure to Xiao in response to
his mocking. Lin had such a conflicting perception of Xiao. He and his family
wanted a tough therapist but he also wanted to “hit him really hard” for imposing
such pain on him and also making him feel inferior.
However, I wish to add my observation of the interaction between Lin and Xiao
and of Xiao’s interaction with other patients and caregivers to complicate the issue of
the power controversy here. Not every therapist on the unit shared a similar tough
love approach and Xiao was perceived to be the toughest therapist. Xiao also had a
peculiar street-smarts and grass-roots personality that was rare among the college-
graduate therapists but very much in sync with the majority of the patients and
caregivers on the unit, mostly people of lower social-economic classes. It was rarely
dull when I observed him interacting with his patients and caregivers. He cracked
jokes and kept the conversation going. What Lin had described earlier in the incident
of “dead monkey kid” and my observation of “dead pig” were parts of the many
witty, sometimes belittling, small talk that some young patients, their caregivers, and
their therapists seemed to enjoy exchanging. Even those who did not participate in
the conversations but were within hearing range seemed to enjoy the joke as well.
Another example is the instance of some patients and caregivers jokingly
addressing Xiao as “senior brother,” a nickname commonly used for the leader of
criminal organizations or street gangs because of his sometimes audacious attitudes. I
had observed several instances when a new patient (not necessarily his) did not
cooperate with the therapy, and other seasoned patients or caregivers attempted to
encourage participation by jokingly asking Xiao to step in. For example, they hailed
Xiao as “senior brother” who just came out of incarceration and asked him to give
the new patient a good “tsau” so he knew who the boss was in the clinics. Xiao came
over and gave a few verbal hoaxes, such as “do you want to know what they do to
the prisoners who refused to work?” “Do you want to know what happened to the
patients who did not cooperate? Look at that patient (with head injury) over there.” I
was at first aghast at such verbal hoaxes as a means to force the patients’
participation in therapy, even though these exchanges were done in a humorous
manner and every body laughed. It however does reflect the perception of patients
and caregivers who saw Xiao as someone strong, powerful, and wanting his way at
whatever means and their acceptance of the tough-love approach on the unit.
There was also a possibility that the much belittling small talk between patients
and therapists and between patients themselves was their attempt to liven up an
otherwise depressing working environment when there was limited hope for patients
and when therapists faced day in and out the suffering and struggles of their patients.
Humor has been suggested as part of therapeutic process when therapists try to build
a working therapeutic relationship with their patients and offer some light moments
in therapy (Tsai & Hinojosa, 2002). However, when the humor went bad, when it
insensitively enforced the inferiority and powerlessness upon the patients, who
otherwise would have enjoyed respect and admiration, conflicts arose.
Having practiced occupational therapy in the US for many years and rarely
having observed any patients being pushed to their limits against their overt
objection in rehabilitation, I was somewhat troubled to find the degree of imposed
severe physical demands in therapy that I witnessed in some – not all – therapy
sessions in Taiwan. I shared part of the preliminary interpretations with fellow
occupational therapy instructors in formal presentations at two university
occupational therapy programs in Taiwan, and in numerous private conversations
with fellow occupational therapists and non-therapist Taiwanese friends. Many
were understandably ill at ease with my observations and interpretations that exposed
a particularly grueling and seemingly problematic aspect of therapy that implicated
them as the instigators. Very few were surprised at the findings. In fact, it was rarely
brought up as an issue unless I initiated the discussion – why the seemingly inhuman
tough-love approach was acceptable and even desirable on the unit, despite the
reluctance of the patients (and sometimes of the therapists as well) and the physical
pain patients had to go through? This lack of “surprise” seems to indicate the
perceived prevalence and cultural acceptance of a tough love approach in
rehabilitation, which is consistent with my observation of the rehabilitative
experiences of the people in the KMH rehabilitation unit, that this approach is taken
for granted as part of the everyday experiences for therapists.
This chapter has explored the tough-love therapeutic relationship between
therapists and patients with a focus on the ideological context of biomedicine and the
Taiwanese classroom culture that contributes to the relationship and experience. I
There was only one therapist that had cautioned the generalization of my interpretations to
other parts of Taiwan. He argued that the tough-love approach, although undeniably prevalent in
therapy, was probably more acceptable for the group of people I studied, who mostly came from
working classes or rural areas. He suggested that the study might have yielded a different finding if it
were carried out with a group of people from middle or high socioeconomic background.
have illustrated how within the KMH rehabilitation unit the Confucian-oriented
Chinese educational philosophy was selectively incorporated in accordance with the
biomedical ideology to ensure the authority of rehabilitation medical professionals
and the compliance of patients.
The acceptance and even the desire of a tough-love approach to tsau patients in
the name of recovery on the unit can be contributed to three cultural expectations of
education in Chinese culture. First, the therapeutic relationship between therapists
and patients in the KMH rehabilitation unit was framed in the context of the
Confucian pedagogic relationship between teachers and students. The pervasion of
teacher-student relationship into therapy reinforced the therapists’ authority in the
medical care of their patients, overriding the higher social status their older patients
assumed. Secondly, a tough-love approach that ignores subjective experiences and
emphasizes physical improvement is compatible with the biomedical ideology that
dominates rehabilitation and with the traditional educational beliefs that equate
education with hard and tough work and emphasizes severe drills to ensure learning.
By prescribing physically demanding exercises and selectively ignoring the
subjective complaints of their patients, therapists maintained the primacy of
biomedical ideology on the unit and met the cultural expectation of being a tough
teacher who tsau their patients/students hard to bring forth recovery. Such cultural
expectations also facilitated the patients and caregivers’ acceptance of the tough-love
approach on the unit.
Third, the traditional Chinese values of the teacher-student (i.e., therapist-
patient) relationship strengthened the therapists’ authority given by biomedical
ideology. This authority also gave the therapists added status to carry out the tough-
love approach. However, the age and life-experience difference between therapists
and patients created a potential clash of power because the therapists were mostly
younger and therefore socially inferior to their patients.
Chapter Ten Occupation, Power Relations, and Ideology
I began this study with two research directions in mind. Firstly, I wanted to have
a deeper appreciation of patients’ experiences with recent physical disabilities and
with rehabilitation in a rehabilitation unit; and, secondly, Iwanted to explore how
patients’ experiences are mediated by the local contextual factors in the clinical
world, such as the ideology of rehabilitation, the structure of the rehabilitation unit,
the attitudes of rehabilitation professionals, and the effects of Taiwanese culture at
large within the microcosm of the rehabilitation unit. are presented in the previous
chapters. My interpretations of these experiences, presented in the previous chapters,
raised two issues that are of particular interest. The first issue depicts how ideology
and power relations are embedded in the occupational experiences of the patients and
caregivers, and the second issue explorers a plausible explanation to why patients
and caregivers desire more rehabilitation when “therapy is pure agony?”
In general, occupational science literature has supported the notion that
occupations are embedded with cultural meanings (Clark, Parham, Carlson, Frank,
Jackson, Pierce, Wolfe, & Zemke, 1991; Molyneaux-Smith, Townsend, & Guernsey,
2003; Persson, Erlandsson, Eklund & Iwarsson, 2001; Rozario, 1994; Townsend,
1997). Like other social practices, the dialectics between individual and occupation
are always set within the cultural context of power relations and discourses. This
chapter is built upon similar assumptions that the choice and participation of a
specific occupation as part of social practice are necessarily situated in the local
context of ideology and power relations. Therefore one’s experience with a particular
occupation reflects an ideological stand one chooses to make – a stand that signifies
one’s perspective on life, illness, and healing. One’s experience with a particular
occupation also reveals the political, social, and economic contexts that lead to or
constrain the choice and participation in that occupation.
A discussion on ideology and power relations embedded in occupation from the
perspectives of the interaction between the individual and the institution is much
needed. I specifically explored the roles of occupation on how new patients and
caregivers were socialized into the biomedicine-dominated rehabilitation,
demonstrated their compliance with the dominant ideology, and, at the same time,
maintained their own cultural pluralistic values, beliefs of illness, and thoughts on
healing that were ideologically different from those of rehabilitation.
A Foucaultian view of power as a “discursive, continuously circulating, power
of discourses” on individual experience (Clarke & James, 2003, p. 1388) as well as a
Bourdieuian notion of habitus, doxa, orthodoxy, and heterodoxy were used to guide
the discussion. First to be explored was how participation in occupation was used as
a means to socialize the patients and caregivers into the acceptance of the
rehabilitation ideology as the doxa on the unit. Rehabilitation then became the
desired means to facilitate recovery. The incorporation of local Taiwanese cultural
beliefs and values into the daily life on the unit to facilitate such a purpose is then
discussed. Lastly, a discussion follows on how the patients and caregivers
orchestrated their daily life in such a manner that both simultaneously incorporated
the rehabilitation doxa and, at the same time, maintained their practices of alternative
illness explanation and healing approaches.
Although the rehabilitation professionals seemed to regard occupations related
to alternative medicine as resistant to the exclusion of alternative discourses inherent
in the rehabilitation doxa, patients and caregivers considered it as complimentary,
similar to Bourdieu’s ideas of heterodoxy, except that patients and caregivers did not
desire to overthrow the rehabilitation doxa.
Desire For More Rehabilitation
The ultimate goal of rehabilitation, from everyone’s perspective (the
professionals, patients, and caregivers on the unit), is to regain bodily control after a
debilitating illness, and, thus, to regain independence and improve the quality of life.
However, rehabilitation for patients on the KMH rehabilitation unit seemed to negate
the efforts towards this goal. The patients’ lived experiences with rehabilitation in
this study were characterized by increasing distrust of their bodies, a total reliance on
others for completing daily routines, a social atmosphere that demanded that the
patient surrender authority of their care to others (rehabilitation professionals and
caregivers), and by requiring that the patient disregard personal needs of emotional
Illness experience in the literature reported similar findings from the patients’
retrospective accounts of rehabilitation including discrepancies between their
expectations with their therapists, findings that the therapy provided did not meet
their individual needs, confusion about the proper course of treatment, and
occasional negative comments about impersonal, humiliating, and even belittling
treatment (Clark, 1993; Cox, Dooley, Liston, & Miller, 1998; Jongbloed & Morgan,
1990; Sabari, Meisler, & Silver, 2000; R őding, Lindstr őm, Malm, & Öhman, 2003;
Wressle, Öberg, & Henriksson, 1999).
Despite the dissatisfaction with rehabilitation, reported satisfaction remained
high in the limited number of studies on rehabilitative services and evidenced by the
desire of most patients on the unit and in the literature for more therapy (Kaufman,
1988b; R őding, Lindstr őm, Malm, & Öhman, 2003; Roush, 1995, cited in Keith,
1998; Sabari, Meisler, & Silver, 2000). How is it that patients and caregivers
remained hopeful and desired more rehabilitation when the process itself seemed to
contradict their goals? Application of Bourdiue’s theory of social practice provides
some explanation (1977) . Specifically, explanations can be arrived at by using the
conceptions of doxa, its transportability, and durability to examine the power
relations, ideology, and socialization issues in the patients’ and caregivers’
experiences with rehabilitation, particularly, the role of occupation in this
socialization process. The process of how one comes to accept the doxa of a
particular group as just and proper as described by Bourdieu can be applied to the
experiences of the patients and caregivers with rehabilitation on the unit – how they
came to accept and desire rehabilitation, as one of the proper and just means to
facilitate recovery, despite the negative experiences associated with rehabilitation.
The dominant discourses that structured the daily routines of the patients and
caregivers can be conceptualized as two systems. One system of ideas regards the
illness and healing approaches available in Taiwanese culture at large. The other
regards the biomedicine-dominated rehabilitation ideology that was espoused by the
rehabilitation professionals and which imposed a structure to their daily routines and
was unfamiliar to most first-time patients and caregivers on the unit. Nonetheless, by
the end of their stay, most patients became supporters of this rehabilitation doxa,
despite the pain and toil in their rehabilitation. They have been inculcated into
accepting the rehabilitation ideology as the doxa of the unit and indoctrinated into
the rehabilitation setting of the hospital.
In doxa, everyone has a perfect sense of limits. The question of legitimacy does
not even arise. The patients might feel that they were not able to handle the demand
of the task but there were no questions about the benefits or legitimacy of the task.
There may have been complaints about the attitudes of the therapists but there was
no resistance to the authority of the therapists over medical issues. There were no
doubts about scheduling routines around therapy, no contests to visits being
prioritized out of daily routines, and no arguments to turning the practices of
alternative therapeutics underground. Everyone accepted it as “the way it should be,”
and as a reality “that goes without saying because it comes without saying”
(Bourdieu, 1977, p. 167).
Doxa--Submission to Rehabilitation Discourse
How did rehabilitation establish its dominance on the KMH rehabilitation unit?
First, when the patients came to the unit, they had a very vague idea of what
rehabilitation was all about and were told one way or another by their medical
professionals that rehabilitation was the way to recovery. This mindset readied them
to submit to the rehabilitation ideology. The biomedicine-dominated rehabilitation
ideology localizes the disease within the patient’s body and dictates the ensuing
physical training to effect changes on the body. Recovery was assessed by physical
progress regarding muscle strength, ability to sit, and ability to stand. A complete
cure, as defined in biomedicine, was unlikely for these patients and a protracted
illness trajectory was a strong possibility. The rehabilitation professionals on one
hand avoided giving a clear prediction of prognosis and, on the other hand, stressed
the moral responsibility of patients and caregivers to comply with the rehabilitation
doxa to facilitate recovery.
The occupational experiences of the patients and caregivers on the unit revealed
six means by which their submission was ensured:
1. The expectation of upholding the primacy of the therapy schedule in daily
2. The use of therapeutic occupations to impose a biomedical gaze in which to
understand one’s disease and in which to view one’s body.
3. A very taxing physical and mental therapy which left them with limited
energy and very little time for anything else.
4. Censure of certain occupations related to alternative therapeutics.
5. Incorporation of local Taiwanese pedagogical philosophy in the process of
therapy that further cemented the authority of therapists and compliance and
perseverance from patients and caregivers.
6. The collective influences of the rehabilitation professionals and experienced
patients and caregivers to legitimize the occupational experiences of the
first-time patients and caregivers from a biomedical-rehabilitative
perspective as such perpetuate the dominance of the ideology.
The tradition of externally imposed daily routines was used as a tool to control
patients’ behavior, maintain the power hierarchy in medical institutions, and improve
health in western medical institutions (Foucault, 1961/1973a; Frankel, 1989;
Jackson, 2000). The patients and caregivers were expected to make therapy
schedules the priority of their days. They were told on their orientations that therapy
schedules would be arranged in one or two days and they were expected to follow
the schedule. The way therapy was set up encouraged patients and caregivers to
spend most of their daytime and energy on rehabilitation.
The rehabilitation ideology did not come naturally to the patients. Upon
admission to the unit, they had to literally learn how to talk the talk and walk the
walk. They learned how to communicate their illness experiences to the
rehabilitation professionals – how to talk a biomedical talk, what to say, and what not
to say, and how to use a rehabilitative gaze to manipulate the body, i.e., how to
observe, manipulate, and interpret the subjective experiences of their bodies. They
learned what to do and what not to do. A stroke survivor in England had a similar
experience with rehabilitation writing, “After a while you start to understand your
new role better and you learn the rules of the new game you are being forced to play”
For example, a reframing of bodily agony was considered more as a natural
process of healing that comes with rehabilitation than as a subjective, emotional
response. In other words, patients learned how to reframe their bodies, behaviors,
and experiences as medical issues that were then subjugated to the professional
jurisdiction of rehabilitation (Foucault, 2000, cited in Samuelsen & Steffen, 2004).
The emphasis on rehabilitation ideology and its ensuing physical training on the unit
clearly conveyed the message to the patients that, at least from the perspective of the
rehabilitation professionals who carried out such an approach, it was the preferred
way to facilitate recovery and the preferred discourse to disease and healing on the
Selective Chinese pedagogical philosophical assumptions prevalent in the
Taiwanese culture were also integrated, although most likely unconsciously by the
members of the groups, into the manner in which physical training was delivered to
facilitate the acceptance and compliance of the patients and caregivers with the
newness of rehabilitation. The therapeutic relationship between therapists and
patients was cast as a pedagogical one and as a result the power relations in
Taiwanese educational culture were tacitly incorporated into rehabilitation. The idea
of patients as subordinates and the false egalitarian, biomedical view of localizing
disease within a person’s body, irrespective of his social background, jointly deleted
whatever social capital patients possessed. Eliminated was the diversity of social
context patients came from and the life experiences they had prior to admission.
With hope of a better future at stake, the degree of recovery contingent upon their
cooperation with the unit (from their perspective), along with being bereft of their
symbolic capital, once they were admitted to the unit their submission to the
dominant rehabilitation ideology was secured. Every body had to learn the new daily
routines, the new exercises, and to learn to “work hard to get your movement back,”
as one physiatrist said.
A specific question was raised earlier regarding why patients desired more
therapy when there seemed to be so many painful aspects to their experiences with
rehabilitation. A possible explanation lies in the incorporation of Taiwanese
pedagogical philosophy, in particular a tsau teaching strategy that only physical pain
and toil lead to progress, which contributes to a specific cultural expectation of how
to do therapy in the clinics and legitimizes the often negative experience with
rehabilitation. The cultural expectation of the patients’ behavior made it hard to
behave other than enthusiastic and motivated; otherwise, they risked being labeled as
unmotivated and uncooperative. This expectation solidified the importance of
personal volition to recovery that originates in the body-mind dichotomy in
biomedicine and is emphasized in rehabilitation (Becker & Kaufman, 1988, 1995;
Along with the emphasis on the tsau approach, rehabilitation professionals and
seasoned patients and caregivers, who had accepted the rehabilitation doxa together,
also contributed to the conformity of the patients with the grueling therapy. Their
complicit collaboration and ignorance on emphasizing physical training resulting in
exhaustion kept the rehabilitation doxa going. In Bourdieu’s words, the patients’ and
caregivers’ conformity was “reinforced by the practice of the other members of the
group … (the circular reinforcement is the foundation of collective belief)”
(Bourdieu, 1977, p. 167). Some first-time patients, like Chu and Lin, were resistive
to the legitimacy of this ideology at the beginning. However, their continuing
participation, albeit often involuntary, in the therapy and the legitimization of their
experiences by other members of the unit facilitated their acceptance of the practice.
For example, Lin was exhausted from the first day of therapy and had doubts
regarding the aggressiveness in which the therapy was delivered. Although still
somewhat skeptical, his family emphasized the importance of the tsau approach to
recovery to him. His therapist reframed the experience of “doing therapy [which] is
pure agony” as a natural part of the recovery process and “good for the patients.” His
next bed caregiver who accompanied another patient in several admissions to the
unit also said to him and his mother matter-of-factly, “Doing rehabilitation is like
this. The first week is the hardest.” Lin and his caregivers’ confusion and doubts of
the appropriateness of the therapy were, therefore, repressed and kept in check. Lin’s
experience with therapy was legitimized and framed as a “natural phenomenon,” as
the way it should apparently be. Thus, in participating in therapeutic occupations, the
aspirations of the patients and caregivers were structured into a “quasi-perfect fit”
relationship with the doxa of the KMH rehabilitation unit (Bourdieu, 1977, p. 166).
All together, the unit’s emphasis on the patient’s compliance and perseverance
to do therapy transferred the responsibility of recovery, which the rehabilitation
professionals were unwilling to accept, to the patients themselves. The patients were
led to concede that if they did not work hard enough, as evidenced by failure to
execute particular movements, that a possible setback to bringing about recovery and
a better future might not occur. Therefore, participation in therapeutic exercises
meant more than just doing what the medical professionals asked. It meant that the
patient was expected to exercise disciplinary power on his body, to manipulate his
own body like an object and effect some wished-for changes for a higher goal of a
better future (Foucault, 2000, cited in Samuelsen & Steffen, 2004). It meant yielding
to a subordinate social position that values the teaching of one’s teacher (i.e., the
therapist) and working hard on the path of learning that brings accomplishment and
honor to the family. When one did poorly, it could bring shame to the caregiver. Like
Lin’s mother scolded him one day following his lack of effort in therapy, “If you
don’t do well, others will think that I did not take good care of you.” Rehabilitation
then became a moral issue. The patients and caregivers were propelled to seek more
rehabilitation if they wanted to get better.
Lin’s transformation from resisting the tsau approach and reluctance in the
beginning to diligently performing the therapeutic regime and voluntarily saying
encouraging words of “take this pain as nutritious food” to other new patients
reflected his incorporation of the doxa into his beliefs and practices. Such is the force
of doxa. Even though most patients and caregivers professed confusion and lack of
understanding of rehabilitation and the rationale for their treatment, the incorporation
of local beliefs into the delivery of the imported, foreign rehabilitation ideology
helped to legitimize the unfamiliar and seemingly unacceptable experience. It also
facilitated the patients and caregivers’ acceptance of and acculturation to the
biomedicine-dominated rehabilitation doxa.
In summary, the patients and caregivers were new comers to the dominated
class on the KMH rehabilitation unit, and the rules and structures on their daily
occupations served to initiate and inculcate these first timers to the rehabilitation
doxa. The imposition of a daily structure required that the patients and caregivers
spend the majority of their time and energy in a specific occupation – therapeutic
occupations in the therapy clinics – that supported the doxa of the unit. In doing
repetitive practices of therapeutic occupations, the patients learned to use medical
knowledge and technologies, taught to them by their therapists, to describe their
bodies, behaviors, and experiences. With the complicit help of the dominant class of
rehabilitation professionals and the dominated members of seasoned patients and
caregivers, patients’ experiences were legitimized in accordance to the rehabilitation
doxa, which in turn helped in its perpetuation. The incorporation of local Taiwanese
pedagogical culture into the process of doing therapeutic occupations eased the
newness of the rehabilitation doxa, which was based on a biomedical ideology that
most patients and caregivers found beyond their comprehension. The local cultural
expectation and rehabilitation ideology emphasized the importance of the patients’
self surveillance and motivation in recovery, and, thus, transformed the physical
recovery into a moral issue. It is not surprising that the patients wanted to get better,
wished to be motivated and compliant with therapy, and desired more rehabilitation.
Orthodoxy or Heterodoxy
Turner’s liminality (1987), “betwixt and between,” suggests that they are
separated from everyday life and in a place that is not where they were before and
not yet the place they would like to be, has been used to describe people’s
experiences with chronic illnesses. Turner’s liminality coupled with Bourdieu’s doxa,
orthodoxy, and heterodoxy is useful in describing the occupational experiences of
patients and caregivers on the rehabilitation unit in terms of how they complied with
and resisted the rehabilitation doxa as well as incorporated local frameworks of
illness and healing. Orthodoxy and heterodoxy each partially describe the state of
this aspect of their experiences. It appears that the patients and caregivers are in more
of a liminal state between orthodox and heterodox, yet without a real opportunity or
intention to overthrow the doxa and enter the state of heterodox.
Orthodox and heterodox are distinguished form doxa because each recognizes
the possibility of different arrangements. Orthodoxy occurs when “the social world
loses its character as a natural phenomenon” and when there are questions raised
about the originally unquestioned reality (Bourdieu, 1977, p. 169). The dominant
class then attempts to restore the “primal state of innocence of doxa,” or create in its
place “the necessarily imperfect substitute, orthodoxy.” Orthodoxy is “the official
way of thinking and speaking the world” and the incorporation of different
discourses that support the doxa (p. 169). Heterodoxy is the “overt opposition
between right opinion and left or wrong opinion” (p. 169) and adds to the legitimacy
of doxa. It offers different, often antagonistic, discourses as “the means of expressing
experiences usually repressed” (p. 171).
Orthodoxy-Incorporation of Taiwanese Cultures
Although illness experience research in a western context suggests that
participation in alternative medicines is a result of the patient’s and caregiver’s
dissatisfaction with biomedicine. Jackson (2000) suggests that this experience is
similar to the state of an orthodox indicating a questioning of the doxa, as
conceptualized by Bourdieu. However, orthodoxy can only partially describe the co-
existence of the rehabilitation doxa and the alternative discourse of illness and
healing that the patients and caregivers adopted in the local KMH rehabilitation unit.
Compared with the patients and caregivers, their rehabilitation professionals on
the unit were much more receptive to the legitimacy of biomedicine-dominated
rehabilitation ideology and used it to deal with the disease with which their patients
suffered. They put a great deal of emphasis on ensuring the practices of the primacy
of the doxa as discussed in the previous section. Nonetheless, the occupational
experiences of the patients and caregiver – the dominated class – suggest that they
did not explicitly question the dominant ideology, but only complied with selective
aspects of the doxa, and at the same time creatively, covertly maintained the
practices of various discourses that the doxa did not support. Their diligent
participation and compliance in therapy and orchestration of daily routines around
therapy schedules reflect, at once, both a selective acceptance of the rehabilitation as
one of the means to facilitate recovery and also the desire to stay on the unit. The
continued contrived practice of alternative therapeutics of the patients and caregivers
in this study reflect their pluralistic perspectives of illness and healing and their
furtive resistance to the idea of biomedicine as the only legitimate discourse of
illness and healing.
As an example, Chu and Mrs. Chu voluntarily admitted Chu into the
rehabilitation program. In addition to rehabilitation, they also chose and participated
in a variety of activities to facilitate Chu’s healing, including specialty food
consumption and preparation as well as pursuits of spiritual healing, acupuncture,
and herbal medication. They did not adopt the alternative discourses because they
were opposed to the rehabilitation doxa and the embedded mechanistic
individualistic view of body and illness, although they often found biomedicine
beyond their comprehension. Instead of conceiving the biomedical framework as the
only legitimate discourse, they saw it as one among many discourses that were
available in the society, and one that was upheld by the authority in hospital.
The variety of alternative therapeutics society and cultural knowledge available
in Taiwanese serve as a “system of ideas that people use” instead of “a deterministic
grid that directs their thinking” (Price, 1987; p. 330). It also gives most patients and
caregivers opportunities to “pick and choose” among available occupational choices
within the constraints of an institution and their own resources to meet their needs.
This individualistic approach can be said of every patient and caregiver dyad that I
came to know. Every one had a different approach to how they combined alternative
therapeutics and rehabilitation to facilitate recovery on the unit. Such a variety of
strategies reflects the potential of the habitus that allows room for individuals to
make “countless inventions” to adapt to the ever changing environment (Bourdieu,
1977, p. 15). These choices also reflect perceived multiple mutually compatible
perspectives of illness and healing that differ from the rehabilitation doxa.
Therefore, a successful composition of daily routines required the patients and
caregivers to understand both cultures – the world of rehabilitation as well as the
world of alternative therapeutics – and creatively orchestrate what they perceived as
the best of these two to meet their needs. For example, the patients and caregivers
scheduled their herbal medication schedule around the medication prescribed by
their physiatrists. They creatively stored their herbal medication to avoid discovery.
Visits to traditional Chinese medical doctors were done during a four-hour pass out
of the unit. Herbal ingredients that were believed to facilitate a person’s recovery
were deliberately put into the specialty food they made, which was not censured by
the unit. The effort to schedule their days, with limits on visits, time, and energy
spent on self care required a great deal of improvisation and coordination. The
ultimate benefit of this practice was that it allowed them to take full advantage of the
governmental (i.e., the hospitals) and folk (i.e., alternative therapeutics) resources
available in Taiwan for healing, and, therefore, maximize their opportunities for
healing. Their experiences reflect the occupational adapation suggested by Frank
(1996), that is, they “select and organize activities (or occupations) to improve life
opportunities and enhance quality of life according to the experience of individuals
or groups in an ever-changing environment” (p. 50).
Bourdieu’s notions of doxa and orthodoxy are also helpful in understanding the
patient’s and caregiver’s experiences with rehabilitation in terms of the roles of doxa
in structuring their behaviors and routines and the complicit practice of the patients,
caregivers, and rehabilitation professionals in turning the practice of alternative
medicines into an underground practice. Their insistence and perseverance in
covertly incorporating pluralistic illness practice into their institutionalized lives on
the rehabilitation unit demonstrate a desire to preserve the appearance of the
dominance of the doxa. The rehabilitation professionals’ deliberately ignoring and
acknowledging the prevalence of alternative medicines on the unit showed their
desire to keep the doxa, while at the same time maintaining the pluralistic practices.
However, the legitimacy of the doxa was not questioned by all members, a defining
characteristic of orthodoxy, in which “the social world loses its character as a natural
phenomenon,” when there is questions raised about the originally unquestioned
reality (Bourdiue, 1977, p. 169).
Heterodoxy – Refute the Rehabilitation Ideology?
As previously discussed, why is it that so many patients and caregivers came
back to the unit desiring more rehabilitation when the approach seemingly went
against their goals and brought about so many negative experiences? This issue can
be further explored with the concept of heterodoxy suggested by Bourdieu (1977).
When a patient did not desire more rehabilitation or openly refuted the rehabilitation
ideology that was perpetuated on the rehabilitation unit, their actions could be
considered a break from the doxa and entering into the stage of heterodoxy. This
occurs in “crisis situations in which everyday order is challenged” by the dominated
class who seeks to make their un-doxical experiences public and to “manifest and
reinforce their concordance” (Bourdieu, p. 170-1). In heterodoxy, possibly
antagonistic discourses are overtly entertained. However, this is not what the
experience of the patients and caregivers on the unit revealed. On the rehabilitation
unit, there was no real possibility of heterodoxy. There was no opportunity for the
patients and caregivers to reject the legitimacy of the rehabilitation to facilitate their
recovery. If they wanted to get better, they had to have rehabilitation.
First, although the patients and caregivers perceived the relationship of
rehabilitation and alternative discourses to be more complementary than conflicting,
they were aware of the stance of the rehabilitation staff some of whom showed
strong opposition to and deliberate avoidance of the issue of multiple approaches.
Despite this difference, all demanded that the patients and caregivers honor the
primacy of rehabilitation in terms of following the exercise regime and keeping the
therapy schedule. The patients and caregivers strove to maintain their occupations of
alternative therapeutics that were ideologically different from biomedicine, and, yet,
at the same time, complied with the rehabilitation doxa. Their creativity and
improvision was essential in orchestration of daily occupations to incorporate their
own agendas into the rehabilitation doxa, or at least they concealed it enough to
prevent open confrontation.
Secondly, because the rehabilitation unit, from the perspectives of the patients
and caregivers, was a transient community, the only lasting members were the
dominant class – the rehabilitation professionals. On the unit, there were many
patients and caregivers who were admitted for the first time and eager to learn what
rehabilitation was all about. They were compliant with whatever means they deemed
necessary to bring forth recovery, particularly when they wanted to maximize their
opportunities of re-admission in the future. The patients who resisted such an
approach might do one round of rehabilitation and never come back. Their awareness
and recognition of the possible different or antagonistic beliefs of healing to the
rehabilitation doxa did not have lasting effects on the unit and were not enough of an
impetus to evoke a crisis situation in which the misrecognized doxa was questioned.
On the other hand, there were many seasoned patients and caregivers that were
believers of rehabilitation and sought repeated admissions to the unit. They were
mostly vocal advocates of the rehabilitation approach and often more than willing to
share their stories. Their influence and the witness they offered helped perpetuate the
general acceptance of the rehabilitation approach, and gave hope to the patients and
caregivers first admitted to the unit who had not yet garnered a clear understanding
of the illness trajectories.
The acceptance of the rehabilitation doxa was not the only reason that propelled
the patients and caregivers back for more inpatient rehabilitation. There were
contextual limitations that minimized the patients’ opportunities of pursuing healing
activities outside of the rehabilitation unit as described in Chapter Five The
Rehabilitation Unit. For example, if the patients and caregivers did not want to stay
in the hospital, the only alternative was going to a nursing home or their own home
with no access to rehabilitation but which did allow access to alternatives (still a
major effort to get out of the house). Therefore, the rehabilitation unit offered an
environment in which patients and caregivers were able to take full advantage of the
resources available in Taiwan to facilitate recovery. They were not only able to
participate in rehabilitation but could also simultaneously pursue alternative
therapeutics, although they had to turn it into an underground practice.
A sense of hope also propelled patients and caregivers to come back for therapy.
From what I observed, there was rarely a patient who left the unit without a sense
that some progress had been made, small though it may seem. Successful
rehabilitation stories flowed and perpetuated. Amid the uncertainty and ambiguity
associated with their prognoses and future, they never lost their hope and were
always ready for “another chance for a miracle.” The recovery trajectory following
an acute neurological event like stroke and spinal cord injury is marked with
moments of despair and an ever-present sense of hope (Laskiwski & Morse, 1993;
Lohne & Severinsson, 2004). In addition, rehabilitation professionals, fellow patients,
and caregivers always ceremonially noted any progress made, even though many
patients and caregivers could not specifically state whether the rehabilitation or the
alternative therapeutics they engaged in brought forth the progress. On the unit, the
environment was such that it allowed the patients and caregivers, if they were
creative and careful enough, to remain hopeful and to take full advantages of the
healing resources available in Taiwan. The covert incorporation of local Taiwanese
cultures maintained at the surface the primacy of rehabilitation ideology and its
effectiveness was not questioned. This social context, along with the individual
progress that every patient experienced, seems to justify and legitimize all the
negative experiences of agony that the patients and caregivers went through, as long
as there was a possibility that rehabilitation would lead to a better future. The
ambiguity in their future conveyed by the rehabilitation professionals brought about
feelings of despair but also a sense of hope because “nobody knows.” Like Lin’s
mother said, “We came in here in an ambulance on a stretcher, of course we hope to
get out in our own car.” The ever presence of hope for a better future, the ambiguity
and uncertainty of the prognosis, and the social environment that perpetuated such
hopes and pursuits of pluralistic approaches are partly what keep the patients and the
caregivers coming back for more rehabilitation.
Occupation as a Means Tto Dominate and to Resist
Rehabilitation and biomedicine were imported into Taiwan, which already had a
long tradition of pluralistic view of illness and healing. In Taiwan, the government
has established biomedicine and, thus, rehabilitation as the dominant ideology in
medical institutions. Building upon the interpretations of the occupational
experiences of the patients and caregivers on the KMH rehabilitation unit, I explored
these experiences in terms of power relations and ideology. I also explored how the
biomedicine-dominated rehabilitation ideology and local Taiwanese culture, in
particular pedagogical philosophy and multiple discourses of illness and healing, are
tacitly incorporated into the daily lives on the unit by the rehabilitation professionals,
the patients, and the caregivers to serve each group’s respective interests. Their
experiences reveal that the members in a local group can use their choice and
engagement of occupation as a means to advance each party’s own preferred
ideologies and power relations.
To summarize, occupation is used as a means to initiate and inculcate the
rehabilitation doxa by the rehabilitation unit. It is a means to dominate (a) when a
structure on daily routines, require participation in specific occupations, such as
therapeutic occupations, and a way in which the proper interpretation of the lived
experiences with the occupation are imposed and reinforced, and (b) when a certain
occupation challenges the doxa and the authority of the rehabilitation professionals,
such as pursuit of Traditional Chinese Medicine in terms of disease management,
that occupation is officially censored. In short, the imposition or prohibition of a
specific occupation serves as a means to promote the propaganda of the dominant
doxa and discourage the non-doxic discourses.
From the perspectives of the dominated class, occupation can be a means to
resist the dominance of the doxa. The strategic incorporation of Taiwanese illness
and healing beliefs with Taiwanese pedagogical philosophy in the orchestration and
implementation of daily occupations reflect the patients and caregivers’ attempt to
conform to the selective aspects of the rehabilitation doxa; yet, at the same time
covertly maintain their practices that reflect their multiple perspectives of illness and
healing. In other words, they re-insert their control in the healing process and resist
the exclusive dominance of the doxa.
Significance and Limitation of the Study
The acts and speech of an individual or group of individuals are manuscripts for
analysis and are open to interpretation by the ethnographer. Ethnography is therefore
necessarily and naturally an interpretive account. The ethnographer observes,
records, and analyzes an experience in order to transform a might-have-been passing
event into a narrative that, after the event, is persuasive enough for the reader to
understand and appreciate the experiences of the observed people (Geertz, 2000b).
Every writer writes what concerns one most and what makes a good story. To claim
to provide a comprehensive description of experiences is methodologically
impossible. The writing presented here reflects not only personal interpretations of
the narratives of the patients and caregivers, either in words or in action told to me
regarding their experiences, but also my personal interests in occupation from a
cultural and critical view of rehabilitation practice in Taiwan. I hope that it brings to
light some aspects of the occupational experiences of the patients and caregivers that
would have otherwise remained hidden.
Despite the explosion in investigation of illness experiences within American
and European medical cultures and despite the overwhelming dominance of people
with neurological conditions on the rehabilitation units in Taiwan, illness experiences
with neurological conditions in Taiwan remains a territory almost untouched by any
systematic research. This study tries to contribute to this issue by exploring the
patients’ and caregivers’ perceptions of rehabilitation. It focuses on the delineation of
the occupations in which they engaged to adapt their lives on the KMH rehabilitation
unit. It also tries to enhance understanding of how these patients and their caregivers
orchestrated various therapies that were geared toward enhancing their functioning.
It takes into account what they have to say about their lives on a rehabilitation unit,
how they made sense of their experiences, and how their experiences are situated
within the context of a rehabilitation unit that invokes biomedicine-dominated
discourses and local Taiwanese plural beliefs of illness and healing.
The homogeneity of the patients and caregivers, in terms of their acceptance of
the legitimacy and effectiveness of rehabilitation in dealing with their illnesses,
reported in here could be considered a limitation to this study. This study focused on
those who voluntarily admitted themselves to the rehabilitation unit subsequent to
their debilitating illness, supplemented by the comments of seasoned patients and
caregivers who repetitively sought admission to the unit. There was minimal
exposure to patients who refused to accept rehabilitation as the dominant means of
healing, and who would not seek admission to the unit. Their perceptions of
rehabilitation were noticeably absent in this study. Therefore, without their voices of
resistance and contestations, this study presents a somewhat one-sided picture of
rehabilitation as an almighty institution that has overwhelming control over an
In addition, the patients and caregivers in this study shared very similar
socioeconomic background, which limits the perspectives of rehabilitation that are
presented here. Almost all were members of the working class. Many patients and
caregivers were from rural areas. The literature has shown that people from this
socioeconomic background practice plural beliefs and practices of illness and healing
in Taiwanese culture more than people who receive higher education and live in
metropolitan areas such as Taipei, the capital of Taiwan, (Chang, 1983; Kleinman,
1980). These individuals might also yield more readily to the authorities of
biomedicine and the practice of certain pedagogical assumptions. As one
occupational therapist commented upon the findings pointed here, if this study were
done in a rehabilitation unit in National Taiwan University Hospital, the most-
sought-after rehabilitation program in metropolitan Taipei in which many patients are
well educated and from high or middle classes, the results might have been very
I wish to make some comments here about where these patients were in 2003,
one year after my fieldwork. After Lin was discharged from the rehabilitation unit,
his wife left him and took all the monetary compensation he received for his
accident. According to the therapists, he came back to the KMH rehabilitation unit
for two more rounds of rehabilitation. His mother repeatedly told his therapists and
him that she was only willing to give one year of her time to care for her son. Lin
still could not walk by the end of his last inpatient stay. Although his therapists urged
him to come back, he never did. When I called him at home, his brother answered
and told me that Lin was “indisposed,” could not talk, and would not say anymore.
Chu went back to his previous job of steel rope making and finished the last year of
his vocational school education. He felt that there was minimal lasting complication
from his head injury and stroke. After discharge from the hospital, Chen went to
Malaysia to stay with his closest family member, his nephew. He continued to
practice his multiple approaches of healing – rehabilitation, spiritual, folk therapy,
etcetera. The last I heard he was starting a part-time office job. Yang went on to
receive two additional rounds of rehabilitation and then stopped because of lack of
financial resources. She spent most of her time in the wheelchair in her living room,
watching neighbors’ activities from her living room window. She lost her vendor
stand with which she made homemade rice cakes in a local farmers market. She was
still hopeful that there might be more recovery.
After one long summer of fieldwork and two years of poring over data and
intensive writing, my work with this dissertation is drawing to an end. I set out in
this study intending to learn about the rehabilitation unit from the patients’ and
caregivers’ perspectives. One of the goals of a narrative analysis is to understand
what is at stake for the person and to provide a plausible explanation of how the
story came about. I hope that this dissertation has to some degree met these
expectations. I hope that the reader gains a glimpse of the life of the patients and
caregivers on the KMH rehabilitation unit in central Taiwan and learns to understand
what was at stake for them.
The dark side of rehabilitation seems to be presented here. My experiences as an
occupational therapist in both Taiwan and the United States and a critical view of
rehabilitation practice in Taiwan in part contributes to my interpretations of the
patients’ and caregivers’ experiences. Yet the stories of the patients and caregivers
that I presented here were mostly “success stories” from the rehabilitation
professionals’ perspectives. I hope to have a chance to share my findings with fellow
rehabilitation professionals in Taiwan, stimulate some thinking of what we in
practice do day in and day out, and show how we structure the experiences of those
who put their hope in our hands.
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Appendix A Patient Activities in a Rehabilitation Hospital
Summaries of Research
In the field of psychology, there are two major systematic investigations, which
were led by Edwin P. Willems in Texas and Robert Allen Keith in California, and
subsequent, numerous publications that provide a glimpse of patient activities in
rehabilitation hospitals. Both projects are based on an ecological psychology
approach, investigating naturally occurring activities in natural settings (Keith,
1988). Data collection included quantitative information on patient activities in
rehabilitation hospitals as gathered by trained observers. It was assumed that these
observers could objectively describe and categorize individual observable behaviors
in response to environmental factors, such as the availability of staff members.
The Texas project, directed by Drs. Willems and LeCompte, was conducted in
The Institute for Rehabilitation and Research (TIRR), beginning in 1968. The
subjects in TIRR included only patients with spinal cord injuries (Frieden &
Halstead, 1976; Halstead, 1976; Halstead, Willems, & Frey, 1979; Norris-Baker,
Stephens, Rintala, & Willems, 1981; Vineberg & Willems, 1971; Willems, 1972). In
addition to providing descriptive data about patient activities, the study investigated
the main issues of the relationship of patient behaviors, hospital environment, and
outcomes. The variables in this project included:
1. The location of patient activities in the hospital (LeCompte, 1972),
2. Time use by patients, including the time during which staff was present
3. The activities initiated by patients (Vineberg & Willems; Willems),
4. Wheelchair mobility as recorded through using wheelchair odometers
which monitored wheelchair activities (Frieden & Halstead; Halstead;
Norris-Baker, et al.),
5. Time not spent in bed as determined by the use of pressure-sensitive strips
under patients’ mattresses (Halstead, Willems, & Frey),
6. Functional outcomes as measured by degree of independence and time
away from home after discharge from hospitals (Norris-Baker, et al.;
Rintala & Willems).
Some of the interesting findings are summarized below:
1. There were a total of 122 places in which patients could have spent time
but they utilized merely 15% of them; in other words, patients showed
limited mobility around their environment (LeCompte).
2. Among all the staff, patients spent the most time with the least medically
trained members such as orderlies and aides (LeCompte). They spent only
11% of their waking hours in therapies, although they were in the hospitals
because they needed rehabilitation (Vineberg & Willems).
3. Using time alone and time during which behaviors were initiated by
patients as a measure of their independence, patients had more
independence in cafeterias and hallways, which were the two most public
and most marginal to treatment settings. In the rehabilitation training and
nursing care settings, patients had the least control over their own behaviors
(Vineberg & Willems; Willems).
4. Patients spent more time in bed if they had more complications, such as an
5. The number of behaviors initiated by patients, behavioral diversity in
multiple places, wheelchair mobility, and time not spent in bed were
positively associated with post-discharge performance (Norris-Baker, et
al.; Rintala, & Willems).
Dr. Keith attempted another systematic investigation of patient behavior in
rehabilitation hospitals. Although much smaller in scope than that of TIRR, the study
provided some interesting results. Stemming from the same theoretical background
of ecological psychology, Dr. Keith’s team observed activity patterns of both patients
and staff, focusing on patients’ use of time in a rehabilitation unit (Keith, 1980; Keith
& Cowell, 1987; Miller & Keith, 1973; Winter & Keith, 1986). While the TIRR
research focused predominantly on a spinal cord injury population, the majority of
subjects included in Dr. Keith’s research were patients who had suffered strokes.
Some of the added insights in relation to patient activities are as follows:
1. Earlier studies in the 1970’s (Miller & Keith; Keith) demonstrated that
patients spent the most time in passive or solitary activities, with less time
spent on treatments. Studies in the 1980’s (Keith & Cowell) showed that
with increasing cost-control and efficiency demands made by insurance
companies, patients spent more time in treatment than they did in the
2. The percentage of time that patients were alone—approximately forty
percent—remained fairly consistent throughout the years (Keith &
3. A different approach—participant observation—was attempted to
understand how life is while living in a rehabilitation ward. One student,
David French, simulated being a patient living in the ward with merely the
director’s awareness that he was doing so. French found that the
experience was stressful as it involved not knowing what was happening
and included much time spent alone (French, McDowell, and Keith, 1972).
These aforementioned two projects provide detailed information about the lives
of patients in rehabilitation units from an observable and measurable perspective in
terms of the manners in which and places at which patients spent their time. The
results support many medical anthropologists’ observation that the experiences of
individuals cannot be isolated from the socio-cultural context (Good, 1994b).
Situational factors, such as changes in insurance regulations, can have significant
influences on individual behaviors.
However, through these projects, we gain only a limited understanding of the
lived rehabilitation experience of the subjects, except in the simulated experience of
one student (French, McDowell, and Keith, 1972). The French et al. study supported
evidence of the experience of initial confusion and solitariness as this experience is
reported as a common experience during hospitalization in the autobiographies of
people with physical disabilities (Murphy, 1987/1990). This finding led Dr. Keith
(1988) to acknowledge the limitations of the observation methodology in
investigating the subjective experience of patients in rehabilitation wards; moreover,
this finding promotes more participant observation in research.
Appendix B The Development of Medical Institutions from a Foucaultian
Foucault’s work in the examination of the history of mental asylums and
biomedicine creates one of the most monumental and influential frameworks for the
research conducted by many who followed. He situated his analysis of the beginning
of biomedicine and modern hospitals within the dialectic had between power and
knowledge (Rabinow, 1984a, 1984b). Along with the birth of biomedicine in the
eighteenth century came the establishment of the prototype of modern health care
institutions, which were born amidst the interaction between then-current political-
societal ideologies and medical technologies (Foucault, 1963/1973b).
In the case of mental asylums, formation flowed from several sources (Foucault,
1961/1973a; 1963/1973b). First, the state and physicians needed clinical settings that
were supervised by prominent doctors so that they could carry out medical training
for future physicians. In gaining the control of the clinical settings and of medical
practice licensures, the authority—the state coupled with prestigious physicians—
secured the mode and pathway of knowledge production and reproduction as well as
their continuing prestige in medicine. Secondly, the authority wanted to establish a
system through which they could gain control over the already established asylums
for people with mental illnesses, who were often those alienated from society,
although the powerful were also institutionalized. Consequentially, the authority had
the influence over who would be institutionalized. Thirdly, the state wished to show
its concern for the well being of its citizens by providing support to public asylums.
Although families were considered to be responsible for caring for the sick, there
were patients whose families were too “ignorant” to provide the appropriate care,
who did not have families, or who were so sick that they necessarily required care
that could not be met by their family. A clinical institution sponsored by the state, or
some wealthy and powerful party, served the philanthropic proposition asserted by
the community that those more fortunate heed society’s need. With the influence of
the state and the medical society and society’s needs for mental asylums, the
prototype of modern hospitals was born.
With the societal and cultural development over the last two hundred years, the
facilities and the style of medical practice has been shown to change accordingly in
many aspects, such as in its temporal and spatial features (Armstrong, 1988). Very
different from the mental asylums in Europe in the seventeenth and eighteenth
centuries, the modern hospital, with doctors’ offices and clinics, wards, an arena of
health care professionals, and a complex administrative body, can be affirmed as a
specific product of both capitalization and the power manifested between patients
and non-patients (Rabinow, 1984a).
Appendix C Informed Consent
年齡 ________，性別 ________
Informed Consent – English Translation
TITLE OF PROJECT:
Rehabilitative Narratives of Individuals with Physical Disabilities in A
Rehabilitation Unit in Taiwan: An Ethnographic Study
Department of Occupational Science and Occupational Therapy
University of Southern California
24-HOUR TELEPHONE NUMBER: 0952257841
PURPOSE OF THE STUDY:
You are invited to participate in a research study of rehabilitative experiences of
patients on a rehabilitation unit. The following information is provided in order to
help you make an informed decision whether or not to participate. We hope to learn
rehabilitative experiences of patients on a rehabilitation unit from the patients’
perspectives. You are invited as a possible participant in this study because your
medical diagnosis match the inclusion criteria of this study. About three to five
patient subjects will take part in this study.
If you decide to participate, I will spend two half days per week observing you
as you take part in the rehabilitation. I will observe you approximate 9 to 12 times
over the course of your hospitalization. I will take notes during the observation.
Videotapes may be taken with your prior consent for each taping.
.I will also schedule interviews with you every other week, with the time and
location at your convenience. Each interview will take one to two hours. There will
be approximate three interviews during your hospitalization. I will tape record the
interviews. The tape will be transcribed in verbatim and analyzed later.
You may experience minor discomfort as a response to my close observation of
your daily routines and to some personal questions during the interviews during this
study. I will make every attempt to make you comfortable and you have the right to
discontinue the observation and interview at any time.
You may receive no direct benefit from your participation in this study.
However your participation in this study may help us learn more about the
rehabilitative experiences from the patients’ perspective and in turn to promote the
rehabilitative services provided to the patients.
ALTERNATIVEs to participation:
An alternative would be not to participate in this study.
Every effort will be made to keep your personal information confidential. The
information from this study may be published in scientific journals or presented at
scientific meetings but your identity will be kept strictly confidential by use of
OFFER TO ANSWER QUESTIONS:
Your participation will be supervised by me, Ling-Hui Chang. My number is
0952257841. You may contact me with any questions or concerns regarding your
participation. If you have any questions regarding your rights as a study subject, you
may contact the Institutional Review Board Office at University of Southern
California, 323-223-2340. 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
which you are otherwise entitled. You are not waiving any legal claims or rights
because of your participation in this study. If you do decide to participate, you are
free to withdraw your consent and discontinue participation at any time."
In the unlikely event that you should suffer an injury as a direct consequence of
the research procedures described above, emergency medical care required to treat
the injury will be provided however the financial responsibility for such care will be
CALIFORNIA LAW REQUIRES THAT YOU MUST BE INFORMED
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 their risks
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
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.
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 Subject Signature Date Signed
Name of Witness Signature Date Signed
I have personally explained the research to the subject or the subjects legally
authorized representative and answered all questions. I believe that he/she
understands the information described in this informed consent and freely consents
Name of Investigator/Person
Obtaining Informed Consent
Signature Date Signed
Appendix D The Financial Impact of Rehabilitation on the Patients and Their
The economic cost of rehabilitation on the patient and the family in the KMH
rehabilitation unit can be categorized by several factors: the hospital bills, the fee for
personal aides or hired foreign helpers, the cost of alternative therapeutics, food,
supplies (such as diapers, nutrient supplements), the loss of income from the patient
and/or caregivers are the main factors. I will describe the cost of rehabilitation in the
first half of the appendix and finish with how the patients and families dealt with the
financial impact of rehabilitation. It should be noted here that the economic impact
of having a family member disabled and in need of medical care was an issue that
most patients and caregivers did not voluntarily share with me during my fieldwork.
When it was brought up by chance or on purpose, it was usually very brief and
vague. People seemed more willing to talk about some expenses that were more
widely considered public knowledge and with a known range, such as how much
they had spent on personal aides, herbal medication, and hospital bills. But they were
often vague in terms of how they paid for it, whether it was a financial burden on the
family or whether they had any financial compensation from private insurance or the
accidents that lead to the illness. Most of the analysis presented here was drawn from
the few patients who shared with me the financial aspect of their experiences with
Hospital bills rarely came up as a problem in the pursuit of rehabilitation for
patients in this study. Taiwan has an existing national health insurance system that
gives every person comprehensive coverage with a premium and co-payment.
Recognizing the chronic and disabling nature of certain diseases that usually put the
person and the family into financial distress, the insurance also subsidizes the
premium and co-payment of those who are qualified as severely disabled. The
criteria for severe disability depend on the diagnoses and the extent of disability.
The National Health Insurance and its subsidy of premium and co-pay for
people with severe disability plays a significant role in the hospital bills the patient
receives. For example, people with spinal cord injuries, such as Lin, are approved of
benefits within months of their accidents. For two months of inpatient rehabilitation,
Lin paid around one thousand Taiwanese dollars (approximately US 40 dollars),
which he considered minimal, based on his savings, family resources, and the
compensation from the accident. People with strokes, have to wait one year after
onset to be assessed and determine if they are eligible. Therefore, Yang with a stroke,
who although by the end of her stay was much more functionally disabled than Lin,
was not qualified to receive the subsidy for people with severe disabilities.
Subsequently, her hospitalization bills were much larger, approximately ten thousand
Taiwanese dollars (approximately US 350 dollars), about eight times more than Lin’s
bills. Because of their lack of resources, the combined impact of the hospital bills
and associated expenses related to food and miscellaneous items as well as lack of
income generated from Yang and Mr. Yang’s previous sale of home-made rice cake,
the economic burden on her family was great and led to her inability to continue
rehabilitation six months after her stroke.
With a diagnosis of stroke like Yang, Chen however had a different story. In
addition to the mandatory national health insurance, Chen also had a worker’s health
insurance from his job and a life-health insurance policy that helped pay his related
medical expenses. His friends also provided various forms of financial support such
as personal donations and fund raising activities for his medical expenses. When he
was discharged, his personal savings were not significantly affected by his medical
Cost of Having a Full-time Caregiver
The cost of caregiving varies, depending on who assumes caregiving
responsibilities and whether there is financial assistance available. Some family
members quit their jobs to care for the disabled family member. Among these
families, some, if they live in certain counties, were able to receive subsidies from
the county office for the care to the hospitalized family member. The monthly
stipend approximates the salary of a full-time worker at a minimal wage. Some
nursing staff believed this financial benefit to be an additional incentive for some
families to keep their loved ones in hospitals. If the patient or family chose to hire an
outside helper to assume caregiving responsibility, there was a widely known range
of fees, about sixty thousand (approximately US 1700 dollars) a month for a personal
aide and about twenty thousand (approximately US 570 dollars) for a hired foreign
helper. The latter usually had a two to three-month wait once the application was
completed. Because of the significant difference between the fees of these two types
of caregivers, it is not surprising that the majority of patients whose family cannot
personally take on the full-time caregiving responsibility on a long-term basis
usually, sooner or later, turned to foreign helpers once they realized the chronic
nature of the illnesses.
The other additional cost associated with hospitalization included the bills for
alternative therapies (such as herbal medication, massage), supplies, meals, et cetera.
This cost, unlike the hospital and caregiving expense which was fairly similar for
every patient, had a much wider range, depending on how much the patient and
families were willing to spend. Mrs. Fang, who cared for her son with the head
injury, had at the beginning of her son’s illness procured an herbal medication to help
with his recovery, which cost six-thousand dollar a week (to put this into perspective,
his two-month rehabilitation hospital bill was around one-thousand dollars). By the
time I interviewed her, six months after the fateful accident, she told me she had
pretty much exhausted all of her family’s saving in providing care for her son.
The patients who received outpatient rehabilitation, who were usually at least
one year out from their disease, were more willing to share with me information on
the economic impact of their disease on themselves and their families. They told me
not only how much they themselves had spent on each one of the therapies but also
often compared their cost to other fellow patients they had known. Overall, fees for
alternative therapies and hired personal aides were the biggest part of the bills. Only
the patients and families with resources were able to sustain the expense on a long-
term basis. For the patients and caregivers who were more vague about this aspect of
the experience at their initial stage of rehabilitation in this study, it seemed that they
were overwhelmed with all the tasks and difficulties they had to deal with. Money
was one thing that they did not want to think about at that time. Mrs. Liu, who cared
for her husband with bilateral stroke, had estimated that she had probably spent over
one million dollars on his care in one year, she said: “I don’t know how much his
care has already cost me. I don’t want to do the calculation. If there is money, then I
buy it. I don’t want to think about it.”
The Financial Impact of Rehabilitation on the Patients and Families
Except for the subsidies from government and insurance or personal and family
resources, monetary compensation for the accident that caused the patients’
disabilities is sometimes a source of income for some patients. Mrs. Chu quit her job
to care for her son, Chu, a teenager with head injury following a car accident, and
went into debt for expenses incurred with the pursuit of many alternative therapies to
facilitate Chu’s recovery. The compensation from the car accident, pending on a
court ruling, was her only hope to repay the debt. She had no other resources
available if the court ruled against the compensation she asked for. She sometimes
got anxious answering the phone, fearing it was a call from people to whom she was
indebted. “In order to pay his bills, I displeased so many of my friends.” She was
also very disappointed at her son’s employer for not financially supporting them
because her son was injured while helping the employer out while performing a
personal household errand.
Despite the reluctance of families to talk about the financial burden, I once
boldly asked a mother, Mrs. Fang, whose son suffered a severe head injury in a
work-related incident whether she received any compensation from his employer.
She told me that she did not nor did she intend to demand it either. “He (the boss)
had a hard life himself. His wife is also paralyzed from waist down. He sometimes
visits us here and brought us some money and food. I did not want to go to court
with him. It hurts our relationship if we have to discuss this money issue.
our fate and what else can you do except bear it?”
Unlike most patients with accident-related disabilities on the unit who were
involved in some legal process to pursue monetary compensation, Mrs. Fang did not
want to pursue financial compensation for the accident. out of consideration for the
good long-term working relationship between her son and his boss, her appreciation
of what the boss had done in their time of needs, and her pity for his personal
tragedy. She did not think of her son’s accident as the fault of others but as the fate of
her family. They had to bear the suffering themselves, despite the fact that she and
her husband lived on a poorly cultivated farm and she had no clear idea how she
“ 談錢 傷感情 (tyán qyán sh āng gân qyíng) don’t mention the money. It hurts our
relationship if we have to talk about the money):” This is a popular slang in Taiwanese society. It is
used most when there are potential money transactions between people who are close or know each
other, such as friends or relatives. When one party did not want the other to give him money for
whatever he had done, he could say that “don’t mention it. It hurts our relationship if we have to talk
about the money.” Occasionally it is also used as an excuse when one party did not want to pay the
could financially support the care of young Mr. Fang and his growing family (two
children and a pregnant wife) on a long-term basis.
Another family, Mr. Yang, also avoided any discussion of the financial issues
for another reason, particularly in front of Yang. He believed in a positive
relationship between emotion and recovery. Therefore, he did not want to upset the
already emotional and depressed Yang for the financial difficulty her stroke put the
family into, despite that he was equally concerned about losing the main income of
their family, the possibility of becoming a financial burden to his sons’ families, and
spending the savings that he had hoped to leave their children for a better future.
Having gone through many financial hardships in their lives, he saw this as another
obstacle in their fate that they just have to bear, “what else can you do? It is not as if
we asked for it.”
The financial impact of rehabilitation on the patients and families varies with
the resources of the patient, the families, the social welfare offered by the
government on both national and local levels. For families with limited financial
resources to begin with, the economical impact can be so great that it brings the
whole family into debt. For those families who are able to receive private insurance
and/or social welfare benefits for people with disabilities and in hospitals, money
becomes less an issue.
The economic cost of illness and rehabilitation on a person with disabilities and
families is often discussed in literature from an objective and measurable perspective
(Taylor, David, Torner, et al, 1996; McGinnis, Osberg, Seward, et al, 1988). For
participants in this study, finance is not only a sum of numbers. It is experienced in
the context of an inter-personal relationship situated in the life narratives of the
persons involved. It is about the maintenance of a relationship among family, friends,
or employer-employee, about the resources accumulated in the past to cope with the
present and foreseeable future crisis, about the changes in the dream that the family
had cherished for the future, and its impact on the interpersonal relationship. It is
also about how the individual copes with a family crisis, how the crisis is explained,
who is to answer for the crisis. A person could look at the disability as their own fate
and they have to bear it. In sum, the economic impact of a disabled family member
in need of medical care needs to be considered from a personal, inter-personal as
well as contextual perspective.
Appendix E Who to Care for the Patients
Who are the caregivers in relation to the patients on the rehabilitation unit?
Because the caregivers of patients have significant influence on the rehabilitative
experiences and daily routines of the patients on the KMH unit, I will discuss who
the caregivers were in relation to the patients, their rationales for taking up the
caregiving responsibility, and how their relations and rationale reflect the societal-
cultural changes in Taiwan in response to urbanization and globalization.
Caregivers of Older Patients
Caregivers on the unit can be divided in two general groups: family members
and professional hired helpers. Since the recruiting criteria of this study gave
preference to the patients who had family members as caregivers, I had more
opportunities to meet and know the family caregivers than the professional helpers,
although I sometimes also make reference to the latter in this dissertation. Family
caregivers are usually the spouses, parents, or adult children of the patients. I will
first focus on the first two groups of family caregivers – spouses and parents. The
lack of the presence of adult children as caregivers on the unit will be discussed in
detail later in the following paragraphs.
The example of Yang, a patient who suffered from a stroke, was cared for by her
husband, Mr. Yang. They had two married sons, each of whom had one or two
children. All the families stayed with Yang and Mr. Yang because the economic
recession in Taiwan, beginning in the late 1990’s, forced them to lose their jobs and
were therefore unable to financially support their families. At the time of Yang’s
illness, one of her sons was trying to open a startup printing business at home and the
other was still looking for sustainable employment, which by traditional Chinese
values would have made him a good candidate to share the responsibility of
caregiving. However, Mr. Yang still shouldered all the care by himself, even when he
himself had a recent fall a few days before Yang’s second admission to the
rehabilitation unit. The accident caused him severe leg laceration, which later led to
severe infection because he was unwilling to leave the unit to see his own doctor.
felt that he must also have sustained a mild head injury because he seemed dazed,
unshaven, unable to concentrate, and even unsteady on his feet at times over the
period of one week, compared with how I had known him a month earlier in Yang’s
first admission. I suggested to him to find a substitute caregiver until he returned to
his full strength. I suspected because of limited financial resources for hired help and
concern of the quality of care by hired helpers,
he declined my suggestion. He did
not want a hired helper and also adamantly refused to ask his son for help,
still take care of her. I will be extra careful. … I have nothing to do at home.
Mr. Yang did not want to leave the unit to see his own doctor because (a) It would take a
few hours to travel back to the clinic which he went for the emergency treatment, and he was
unwilling to leave Yang alone nor called on his sons for respite care, (b) the cost of transportation and
medical care would add extra financial burden to his already cash-strapped condition, and (c) he had
very minimal previous experiences with the health care system in Taiwan and did not know that he
did not have to go back to the same doctor who dressed his wound for further wound management. He
could have seen some other doctors in KMH for wound care.
Other than financial reasons, concerns about quality of care by hired helpers was a reason
many patients and family caregivers opted to do it themselves. Abounding on the unit among family
caregivers and patients were tales of abuse and neglect by some of the hired helpers.
I did not feel comfortable probing this issue further for fear that it might be their sons that
had refused or explicitly not volunteered to share the physical or financial responsibility. If that was
the case, asking Yang and Mr. Yang the question of why their sons and daughter-in-laws were not
there to help would bring them embarrassment of having un-filial sons and possibly put Yang into an
emotional turmoil. I did not want either to happen.
…Children are all grown up now. They are busy with their own things too. Why ask
them when I can still care for her well?”
In another words, as long as the other elder spouses still perceived themselves
as capable of caregiving, “why ask them when I can still care for her well,” caring
for their ailing spouses was a contribution that they could make to their homes and
their children. So instead of having “nothing to do at home” and transferring the
caregiving responsibilities to their “all grown up” children who were “busy with
their own things,” such as starting a business or looking for employment, Mr. Yang
took up the job, even at the expense of his own health (this issue will be discussed
further later in the chapter). The elderly spousal caregivers did not want to have
themselves seen as being, a burden to their children, or to appear as the obstacle to
the opportunity their children could have to build themselves a good living even
though they were in real need for help themselves.
Lo and Mr. Lo lived in a rural city near KMH. Their children were all married,
had their own careers, and lived in other metropolitan cities. After Lo was ill, she did
not have any grown-up children nearby to share the physical responsibility of care.
Her husband, Mr. Lo, who had retired two years previously, took on the task. In the
process of almost one-year of rehabilitation at the time of this study, their children
provided economical support and occasional respite care for Mr. Lo when he was in
desperate need. For example, Mr. Lo had a precarious hypertension problem and was
several times debilitated by his headache from hypertension, a few hours to a few
days at a time. In those instances, both Lo and Mr. Lo did not want nor expect their
children to provide physical care for them. Mr. Lo would have paid for hired
personal aides but Lo had insisted on no professional helpers (she did not feel that
Mr. Lo was too week to care for her nor that her needs were too demanding for Mr.
Lo to handle). She finally reluctantly agreed to the help from her daughter-in-laws at
the earnest entreaties of her children. Only then one of their daughter-in-laws came
to help for several days.
Mr. Lo and Lo did not want to take their children away from their work or their
families on their accounts because they felt their children had more “important tasks
to do,” such as raising and supporting their own families. Mr. Lo said, “They (his
children) all have their families and their own careers now. … I can still take care of
her. I don’t want to burden my children.” “Now it is one person one family.” In other
words, each person is responsible for his own family. That is, like Mr. Yang, Mr. Lo
felt that he alone should take care of Lo and make any sacrifice if needed. Similar
statements were made by almost every elderly spouse caregiver I talked to in terms
of sharing caregiving responsibilities among immediate family members, even when
one of the children was physically capable and available to assume the care, like Mr.
Out of the over one hundred patients on the unit throughout my fieldwork, to
my understanding there were only four or five patients that were exclusively cared
for by their adult children. Many adult children paid frequent visits to the unit but
they delegated the physical task of care to hired Taiwanese professional attendants or
foreign helpers. The fact that so few adult children would consider caring for their
ailing parents is in stark contrast to the typical Chinese family values and beliefs of
filial piety. The discussion above shows partly the reason why the elderly parents
resisted the idea of having their grown children share the responsibility.
When there is no spouse to care for the elderly patients, it is often acceptable or
even desired by the patient or the children that the children pay hired helpers
instead of providing care themselves. An example is Huang, who was widowed, had
a younger son who was unemployed, single (therefore no family to take care like Mr.
Yang and Mr. Lo’s), lived with her prior to her illness, and continued to live in her
house following her hospitalization. Her older son was a successful fruit vendor and
had several grown-up children. After Huang became debilitated following a fall and
a failed spinal surgery, traditional values would have dictated either her younger son
or her stay-at-home daughter-in-law, or any of the adult grandchildren, share in the
caregiving tasks. Instead, her older son provided the financial means to hire personal
aides to provide physical care, to take the load off his children and his wife – who
had a rocky relationship with Huang in the past. Living in a neighboring city, Mr.
Huang visited his mother once or twice every week and was recognized as a filial
son by other patients and caregivers because he frequently visited and took full
I have a personal observation to add. I practiced occupational therapy in Taiwan from
1989-91 and 1996-99. In the early 90s, the patients on the rehabilitation unit where I worked were
mostly cared by their spouse, children, or daughter-in-laws. Only a minority were cared for by hired
helpers. Many caregivers quit their jobs to care for their ill family members. In the late 1990s, the rate
of professional aides increased and after the import of foreign personal aides to the Taiwan labor
market, their market share in long-term care rapidly increased. Although I could not find any studies
that specifically look into the changing patterns of caregivers in Taiwan, I have shared my observation
with many of the therapists and Taiwanese personal aides. They mostly concurred with my
responsibility for the expenses incurred by his mother’s care. The traditional filial
expectation for children at the time of a parents’ illness seemed to have changed from
provision of physical care to fulfillment of responsibility by providing financial
support in hiring helpers as well as the supervisory role in caregiving.
Caregivers of Younger Patients
For younger patients, the type of caregivers showed more a diverse variety. For
example, Chu and Wu suffered from head injuries and were in their teens. Both
Chu’s and Wu’s mothers quit their jobs to care for them, despite the financial
hardship that came with the loss of their income.
Fang suffered from a much severe
head injury (still in semi-comatose state). He was in his thirties and married with two
very young children. His parents cared for him because they were concerned that his
wife (being from Vietnam and unable to speak Taiwanese well) was not able to
adequately communicate with medical professionals. She was also expecting another
baby. Fang said:
Fate plays a bad joke on us. … It is our fate. What can you do? You bring him
up and now he is like this. You can only do the best you can (to care for him
now). So he can be independent again and take care of his own family. The
new do not have to care for him any more.
Fang’s parents shouldered the responsibility without much complaint. They
considered the caregiving as fate and part of their parenting responsibility, to once
again raise their child to independence, even when in reality there was very little
Wu’s mother received a subsidy from a local county that assists the families with
hospitalized severe disabled children. The monthly compensation was a stable income source, a little
less than what she would have made, for example, on factory assembly line. But Chu’s mother, living
in a different county which did not have the benefit, did not have such compensation and had to
borrow money from relatives and friends to cover the expenses.
hope – at least from the perspective of most rehabilitation professionals – that Fang
would ever be able to do things for himself, let alone become independent again and
take care of his family. Chu’s and Wu’s mothers voiced similar perceptions. They
saw caregiving as fulfilling the responsibilities of parenting, however extended it
may seem to be.
A debilitating accident and the resulting physical disability of their children
eradicated their past efforts of raising the children and they were forced to do it all
over again. However, I had only heard occasional lamentations from them. For them,
caregiving for their children seemed to be perceived as the path every parent treads
and therefore not much to be complained about. After six-months of caring for Fang,
Fang’s parents realized that Fang’s recovery would take more than one or two years
and they were also needed at home to care for their expectant daughter-in-law and
later for the new grandson. They decided that being needed in two places at the same
time was a demand they could not meet and applied for a hired foreign helper to
assist in providing care for Fang.
But not every parent was as willing as the parents mentioned above to take on
the responsibility of caregiving. Lin, a quadriplegia, was married with a stay-home
wife. Mrs. Lin and old Mrs. Lin, Lin’s mother, shared the caregiving. However, as it
was becoming evident that Lin was not expected to recover soon, Mrs. Lin showed
less and less interest in caregiving than in finding some paid employment and
eventually left him. Expecting Lin’s wife to take full responsibility for caregiving
and the reality proved otherwise, old Mrs. Lin became very upset and complained
bitterly of the burden of caregiving. She eventually gave up too.
Caregiving Pattern and Sociocultural Realities in Taiwan
The increasing numbers of elderly spouses as caregivers, decreasing physical
commitment of adult children to caregiving, and increasing reliance on hired helpers
for these elderly patients on the KMH rehabilitation unit reflect in part the change in
family values and socioeconomic realities of contemporary Taiwan. First, in addition
to the perception of caregiving as spousal responsibility, these elderly caregivers
perceived the caregiving of a parental duty that strives to remove any obstacle in the
development of their children. Secondly, caring for elderly parents in Taiwan is no
longer considered, at least from the perspectives of the elderly spousal caregivers, as
a filial obligation of their children but a burden to them.
The traditional expectations and values with regard to Taiwanese families in the
care of parents with physical disabilities have changed as Taiwan has undergone
tremendous social transformation associated with globalization and urbanization.
Three major transformations in the socioeconomic realities in Taiwan that are related
to the change in caregivers for the patients on the unit are the structures of families,
the value and practice of piety, and the relative cost of caregiving.
There have been changes in family structures in terms of a gradual increase in
the percentage of nuclear families and a concomitant decrease of extended families
in the last several decades. Taiwan has experienced a mass migration of the
productive, i.e., young, people from rural areas to the large cities. In addition, there is
an increasing acceptance for the adult children who have their own careers in other
cities or have their own families, to move out of the parents’ houses. In rural areas
where most patients in this study came from, it was common that one family consists
of only one or two elderly parents whose adult children were living in the cities. The
children who still stayed with their parents, like Yang’s and Huang’s, had
encountered difficulties in their lives, such as the loss of their job. Their parents
hesitated to add the burden of caregiving on them. Therefore, when one parent was
sick, their children usually were not asked to share caregiving responsibilities.
There has also been a change in the practice of filial duty. Traditionally, it was
highly valued that children provide care in person for their parents whenever it is
needed to show their piety. Taking care of family members in need, especially those
who are elderly, is expected and brings honor to the entire family. Inability to
perform this traditional duty, especially for the adult offspring, brings the family
shame (Chou, LaMontagne, & Hepworth, 1998; Kao & Stuifbergen, 1999). In my
observation of the family involvement in the patients’ care in KMH and my personal
experiences with rehabilitation in the past ten years, it was evident that this value and
its practice have however changed quite dramatically. Because of the changing
family structure from extended family to nuclear family as well as societal values
that emphasize individualism and productivity, instead of quitting their own jobs to
care for their parents as I had observed in the 1980’s and early 1990’s, more and
more children now choose to relegate caregiving to some one else, mostly hired
helpers. Parents also do not consider physical caregiving as part of filial obligation
and perceive the responsibility less valuable than their children’s careers. They
therefore do not want to burden their children with caregiving, particularly when
they themselves were still capable and available to do the job.
Concurrent with the change in family structure and the value and practice of
piety is also the relative low cost of getting a hired foreign helper due to a change in
the national labor policy in the last decade in which foreign workers from south Asia
countries such as Vietnam, Thailand, and Philippines are being imported more
extensively to Taiwan. The cost of a hired foreign helper is about one third of a hired
Taiwanese personal attendant. It is then not surprising that many families,
particularly the adult children who were unable to commit to full-time caregiving
without giving up their jobs, opted to hire a foreign helper.
When it comes to family caregivers that take on the physical care for their loved
ones, the participants in this study would be considered as somewhat atypical to the
pattern described in literature. Studies have suggested that women tend to more
willingly take on the role of caregiver and change their occupational pattern
accordingly (Chou, LaMontagne, & Hepworth, 1999; Kao & Stuifbergen, 1999).
This study shows a somewhat inconsistent pattern. True that on the unit, almost all
the hired personal aides and foreign helpers were women, but they received
monetary compensation to provide caregiving. Caregiving is their paid work. A
family member as a caregivers not only did not get paid but also sometimes
experienced the loss of income as well. The two male caregivers mentioned above,
Mr. Lo and Mr. Yang, had stood by their disabled wives and earned the reputation of
a good caregiver on the unit. They willingly took on the responsibility because there
was no one else available.
The caregiver pattern in this study suggests that in terms of caregiving, patients
and families are “rule users” in adopting and modifying the beliefs and resources
available in the society (Mishler, 1999). Traditional Chinese family values and
structures although still influence the caregiving behaviors in Taiwan, especially
those of the adult offspring, but the way they fulfill responsibility has changed quite
dramatically from that of sacrificing their own careers to care for their parents to
keeping their careers and paying for hired help. The expectations of parents has also
changed from that of expecting children to physically care for them to that of
providing financial support or only emotional support in the case that the expense
may add burden to their children’s families.
Parents appeared to be more willing to take on caregiving for their children with
disabilities (Martison, Davis, Liu-Chiang, Yi-Hua, Qiao & Gan, 1995). The pattern
of how family members share caregiving becomes a very complicated issue.
Diagnoses, age, or the needs of the patient seems to play a less significant role than
the more pragmatic issues, such as individual availability, family needs and
dynamics, and the changing socioeconomic realities in Taiwan.
I would like to end this appendix on how family members decide who is best
able to care for the patient with a comment by a professional attendant who had been
in the business for many years and observed many patients and their families. She
summed it up, in a satirical way, very well in terms of the emotional and moral
aspect of sharing caregiving among family members. She referred to an old
Taiwanese saying (though I had never heard it before):
My wife and children are mine,
Mom and pa are every bro’s and sis’,
Grandpa and Grandma are everybody’s.
In more explicit terms, my spouse and my children are mine and when they are
sick, I will take care of them. They do not have to be afraid that no one will care for
them. Parents belong to every sibling and when they are sick, we siblings share the
responsibility, i.e., no one is expected to provide the physical care by herself or
himself. So it is unfair when a child is forced to take a major role in caregiving.
Grandparents are everybody’s and when they are sick, although everyone in the
extended family is supposed to share caregiving, no body will care for them
(thinking of someone else should do it).
University of Southern California Dissertations and Theses
No words necessary: An ethnography of daily activities with young children who don't talk
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The Personal Projects Approach: A method to use with persons with multiple sclerosis
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Therapeutics and science in the history of occupational therapy
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Establishment and sustainment of friendships of women with physical disability: The role of participation in occupation
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Taiwanese parents' attitudes toward play for their children with cerebral palsy
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Constructing identities in social worlds: Stories of four adults with autism
Rehabilitative narratives of individuals with neurological illnesses and their caregivers in a rehabilitation unit in central Taiwan: An ethnographic study
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