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RACE, CLASS, AND DISABILITY:
NONCOMPLIANCE AND PATIENT-STAFF RELATIONS
By

Carrie Kathleen Alexander

A DISSERTATION
Submitted to
Michigan State University
in partial fulﬁllment of the requirements
for the degree of

DOCTOR OF PHILOSOPHY

Department of Anthropology

2000

ABSTRACT

RACE, CLASS, AND DISABILITY:
NONCOMPLIANCE AND PATIENT-STAFF RELATIONS

By

Carrie Kathleen Alexander

The events and interactions recorded and analyzed in this document focus the
anthropological lens on the physical rehabilitation unit as a microcosm of society in
which the elements of change, loss, and conﬂict are forced upon people in a constriction
of space and time. Noncompliance is a term used in the health care profession to label
those patients who are not following a prescribed treatment regime. When examined
through an anthropological lens, noncompliance is illuminated as a function of the
relationship between health care professionals and patients. This analysis examines the
physical rehabilitation unit as a microcosm of societal conﬂicts, with a focus on race and
class, which are nearly inseparable in the Southern US. still today, as this study shows.
The critical exploration of institutional structure and its effect on the lives of patients and
staff in a physical rehabilitation center provides insight into the lives of newly disabled
individuals, their families, and the staff members with whom they come in contact while
in the hospital.

Ethnographic analysis is used as the major source of data, augmented by
population statistics and historical research. I draw from the literature on an
anthropological theory of praxis to address disability identity. I developed an historical

perspective on race, with evidence to show that racism persists, although it may have

changed forms in the past thirty years. Differing deﬁnitions of racism abound, with many
white people being totally unaware of the privilege that whiteness brings.

Ultimately, race is one path institutions take to limiting access to economic and
political power. As discussed further in this study, from the beginning of the European
colonization of this land to the present day institutional reproduction of culture and power
relations, race has been used as a way to support one ideology over another, creating a
structure invisible to most individuals.

My description of the structure of the rehabilitation unit begins the presentation of
ﬁndings of this project. At times, the examples in this study show that race was not a
conscious issue with many patients or staff, but the habitus was a silent and ever-present
shadow brought to occasional consciousness by a racist statement or action, or by the
recognition of the reproduction of the institution. Particular informants, especially
technicians, had a unique vantage point: partly in the professional world of health care
workers, and partly in the patients’ world, blurring the lines between subject and object,
and professional and patient. The theoretical foundation of embodiment, political
economy, and power is expanded, including a discussion of how these concepts are
exempliﬁed in my ﬁndings, relating them to institutional policy and reproduction. The
concluding chapter redeﬁnes noncompliance, and calls for a recognition of the
complexity of rehabilitation as it relates to access, agency, and resistance in medical

institutions.

Copyright by
CARRIE KATHLEEN ALEXANDER
1999

ACKNOWLEDGMENTS

Many people have helped me accomplish this rite of passage, and I wish to
recognize their noteworthy efforts. My committee members, Ann V. Millard, Judy Pugh,
Loudell Snow, Frederic Roberts, and Richard Thomas, facilitated stimulating directions
for this document and were exemplary educators in my tenure at Michigan State
University. I wish to especially thank Ann Millard for her constant guidance, editorial
expertise, availability, and organizational skills. Additional readers and ﬁiends were a
source of support and idea development: Molly Lauck and Julie Reyes. I thank my
parents for never letting me think there were limits to what I could accomplish. My son,
Wesley, was a constant source of joy, and I hope he will forgive the time I had to spend
being an anthropologist instead of a mom. Most of all, I thank my husband, Ross
Bernhardt, for his computer skills, typing, transcription, editing, parenting, and loving

support. I could not have done it without him.

TABLE OF CONTENTS

LIST OF TABLES ..................................................... viii
LIST OF FIGURES ..................................................... ix
CHAPTER ONE

Introduction .' ........................................................... l
Contextualizing Myself ................................................... 5
CHAPTER TWO

Embodiment: The Body As Living Sculpture

Literature Review ............................. ‘ ........................... 7
Sequestration of “Races” in the US. ........................................ 11
The Black Underclass ................................................... 12
Objectivism and Ofﬁcial Knowledge ....................................... 15
An Anthropological Analysis of Disability ................................... l9
Subject/Object ......................................................... 20
Stigma ............................................................... 21
Liminality and Commmiitas ............................................... 22
Disability and Cosmology ................................................ 24
Embodied History: Toward a Theory of Identity ............................... 27
CHAPTER THREE

Methods

Evaluation of Historical Data .............................................. 33
Participant Selection and Data Collection .................................... 37
CHAPTER FOUR

Eggshells and Kid Gloves: Race Relations in Madison County ................... 45
The Building of New Barriers ............................................. 47
Other Aspects of Jackson History .......................................... 55
CHAPTER FIVE

The Setting -

Social Networks and the Difﬁculty of “Getting In” ............................. 58

vi

Points of Conﬂuence .................................................... 65

The HOSpital ........................................................... 66
Getting In ............................................................. 66
The Rehabilitation Unit .................................................. 72
Discussion ............................................................ 81
CHAPTER SIX

Theory on the Ground in Jackson

Anthropological Theory: Praxis Explored in Jackson ........................... 85
Acquisition of Embodied Traits ............................................ 86
Western Individualism Meets Embodied History .............................. 88
Political Economy: The Bottom Line Masquerades as Necessity .................. 90
Reproduction Through Obj ectivism ........................................ 95
Agency, Resistance, and Consciousness .................................... 103
CHAPTER SEVEN

Power and Resistance in the Rehabilitation Experience ........................ 110
Team Conferences: Findings ............................................. 1,12
Voices .............................................................. 113
Josephine ............................................................ 116
Grace ............................................................... 117
Monique ............................................................. 122
A]. ................................................................. 125
Toni ................................................................ 131
Brief Glimpses ........................................................ 134
Policy and Race ....................................................... 136
Noncompliance ....................................................... 141
CHAPTER EIGHT

Discussion and Conclusion .............................................. 142
Noncompliance: Fault Line Over Deep Rumblings ............................ 148
GLOSSARY ......................................................... 153
APPENDD( A: Semi-Structured Interview Guide ............................. 157
APPENDIX B: Selected Interviews and Cases ............................... 159
APPENDIX C: Sample SOAP Note ....................................... 163
BIBLIOGRAPHY ..................................................... 165

vii

LIST OF TABLES

Table l - Race, Gender, and Position of Participants in In-Depth Interviews ......... 40

Table 2 - Rehabilitation Patient Statistics (1996-1997) ......................... 1]]

viii

LIST OF FIGURES

Figure l - Rehabilitation Unit Lay-out ....................................... 75

Figure 2 - Rehabilitation Department Organizational Chart ...................... 77

ix

CHAPTER 1
INTRODUCTION

“Noncompliant” is a strong word used by health professionals to describe a patient
who refuses to follow the advice of medical professionals, and is used freely in medical
records and in discussions of patients in the halls of hospitals and clinics in the US. When
viewed through the lens of medical anthropology, however, noncompliance is transformed
from a way to unconsciously blame the patient for the failure of suggested treatments to a
complex interaction of misunderstandings, disagreement, and resistance between the
patient and the health care professional. This study explores the proposition that
noncompliance as a medical phenomenon is most prominent when the patient and the staff
differ signiﬁcantly in factors such as class, race, religion, and personal values. The medical
setting of a physical rehabilitation unit is the site where most of this research was carried
out to address noncompliance in the context of daily conﬂicts between patients and staff.

When a person is suddenly beset with a life-threatening and life—changing illness or
injury such as a stroke or paralysis and is forced to interact with others while learning new
ways of accomplishing personal daily tasks, interactions take on an intensityI of purpose
and level of conﬂict not otherwise witnessed in routine activity and encounters.
Rehabilitation units are ﬁlled with people in transition and crisis, and therefore often
involve upheavals in family relations and power struggles of patients with family, friends,

and staff. The emphasis of this document is the rehabilitation unit as a microcosm of

2

societal conﬂicts, especially in terms of race and class. “Race” is a term used frequently
throughout this document, however it does not represent the physiological or
morphological meaning of the word, but rather the most common term for ethnicity used
within the community of Jackson, and the South in general. For discussion of race as a
concept, refer to Chapter Six. Race or ethnicity has been an issue with which I have
struggled since childhood, and I have recognized a need to examine my data collection
with this inﬂuence in mind. I have approached this subject as an advocate for improving
race relations and eliminating racism, and have wrestled with my admitted advocacy in
data collection and analyzation.

The critical exploration of institutional structure and its effect on the lives of
patients and staff in a physical rehabilitation center provides insight into the lives of newly
disabled individuals, their families, and the staff members with whom they come in contact
while in the hospital. The ultimate goal of this project is to illuminate the socially
embedded creation of noncompliance, and to deconsU'uct the ofﬁcial knowledge and
rhetoric of the medical community. Embodiment is explored as a way that conﬂict arises
between patients and staff, employees and employers, and African Americans and whites
within the context of the Southeastern United States. Racism exists in many forms, and is
still a fundamental concept in comprehending societal conﬂict, and essential in
understanding the cosmology and cultural reproduction of this region. My hope is that
this project will help to achieve a deeper and richer understanding of the struggle to be
whole in an increasingly fragmented society.

Chapter Two, entitled “Embodiment: The Body as Living Sculpture” explores the

literature, and outlines the development of habitus (Bourdieu, 1990) within the context of

3
anthropological praxis theory. Recent anthropological views of disability are highlighted,
with discussion of the socially constructed concept of “handicapped” within this culture.

Chapter Three, “Methods,” Through interpretation and ethnographic analysis, I
found noncompliance to be primarily a function of the relationship between the health care
professional and the patient, rather than difﬁcult, stubborn, or uneducated patients
resisting what is right and logical. Institutionalized racism, economics, education, and
social mores all play a signiﬁcant role in forming the uneven ground on which the social
dance of medical intervention takes place. The effect that the anthropologist can
sometimes have on the community is considered, with a personal example of how the
interpreter is interpreted.

Chapter Four begins the major ﬁndings of this project. I present an overview of
historical and geographic aspects of the community of Jackson, Tennessee. Class and race
relations are reviewed, including critical examinations of how racial discrimination and
segregation continue to effect the interactions of various sects of the community. Chapter
Five describes the difﬁculties with obtaining permission for research, as well as the major
ﬁndings of the project. Challenges to communicating and accomplishing daily tasks
highlight my navigation through business, personal, and professional interactions.
Perceiving economic and education differences between the black and white communities
in Jackson is paramount to understanding the climate of overt friendliness and covert
resentment. Signs of hope for narrowing the schism between the communities exist with
increasing frequency despite the difﬁculties.

In Chapter Six, theoretical constructs are revisited and expanded, including how

- the separation of Aﬁican Americans and white Americans in this community and others

4

contributes to differences in perceptions of which problems exist, and how to solve these
problems. Individualism, social responsibility, and economics demonstrate the
separateness of the rhetoric within the region. Concepts such as political economy,
official and unofﬁcial knowledge, and resistance illuminate the environment in which the
label of “noncompliant” is born within the hospital. Objectivism is deconstructed as a
method of reifying the power structure within a system, and minimizing the legitimacy of
active and resistive agents. The lack of room for grief in the physical rehabilitation
process increases the possibility of conﬂict, depression, and resistance.

Chapter Seven adds a deeper context to informants’ voices, with revealing
interactions and discussions as the focus. Detailed analyses of several cases demonstrates
the effect of institutionalized racism framed as “noncompliance.”l

The eighth chapter concludes the study, with discussion and analysis of power,
resistance, embodiment, habitus, and praxis. Future research is implicated, with emphasis

on improving access, equality, and humanity with the rehabilitation process.

 

lInstitutionalized racism is deﬁned in this document as primarily unintentional actions
or policies which guide the production and reproduction of a system, with a functional
outcome of exclusion of those of color from beneﬁtting from the system in a variety of
ways (Gregory, 1993; Harrison, 1995; Millard, 1994).

Contextualizing Myself

I have crossed many lines. . .

Not another middle class white person on race!

You gotta do whatcha gotta do. . .(My mother)

The task of contextualizing my role in the complex strands of this community
should begin with my own origins and aspirations so that they may be scrutinized for
biases (“true objectivity” denounced). I have lived in several different regions at varying
levels of economic class, beginning with my upbringing in the nearly all-white rural Ozarks
of southwest Missouri. There I grew up around poverty, practicality, and unfortunately,
racism. Due to the mobility required of my father’s military career when I was a child, and
substantially through my parent’s career changes brought about by his injuries and
disability, I was exposed to multiple perspectives of cultural regions, educational levels,
and economic classes. I began to question the values of the culture within which I had
been raised, one of which dealt with my puzzlement and amazement regarding the level of
racism against Aﬁican Americans in an area where there was less than one percent Aﬁican
Americans. In other words, how do people who have never met members of a speciﬁc
- race category develop such an ingrained hatred of them?

I remember the summer of my ninth or tenth year, and how I discovered that,
despite what most of the people of the small all-white town in the Ozarks believed, there
were good black people in the world. During one memorable camping trip, I lay awake
and eavesdrOpped on my father’s conversation with a an old high school ﬁiend in which he
discussed his experiences in Vietnam in a way that ten-year-old girls are rarely exposed. I

learned that some of the men responsible for saving my father’s life on a rice paddy in

6

Vietnam were black, and that perhaps they had come back for him because my father
treated them with respect.2 This planted a ﬁerce belief in my child’s mind that bigotry was
the root of many evils. It was so rampant in whites that a white who treated blacks with
respect was rare enough to warrant acts of decided bravery in order to save him.

Although I have yet to answer completely the question of racism and how it became so
endemic, it continues to drive my need to discover more about the process of race
relations and personal concepts of race.

Later, as an aspiring occupational therapist, I questioned some of the perceptions
commonly held about people with disabilities, and recognized the pain and conﬂict
inherent in dealing with the onset of a disability. My parents’ discussions of their
difﬁculties in dealing with an occasional self-righteous health care professional during my
father’s hospitalizations and surgeries helped me to develop a tempered view of “medical
authority.” I chose to be a medical anthropologist because of the. tools and concepts in
anthropological research appropriate for understanding the complex perspectives of the

medical experiences of my family and others.

 

2The Vietnam era was in many ways a tmning point for civil rights and race relations,
and is beyond the scope of this document.

CHAPTER 2

EMBODIMENT: THE BODY AS LIVING SCULPTURE

In this chapter, I review the anthropological literature for themes of biomedical
constructs, and I also analyze “race” as a socially constructed concept, with speciﬁc
examples from Jackson, Tennessee. I draw from Pourdieu’s theoryigof practice to analyze

experiences and data from my ﬁeldwork, focusing on the themes of embodiment, agency,

and resistance. An anthropological analysis of disability concludes this chapter.

Literature Review
Pierre Bourdieu has articulated a theory in The Logic of Practice (1990) that he
intends to reconcile theoretical and practical thought in anthropology. Bourdieu states

that:

The theory of practice as practice insists, contrary to
positivist materialism, that the objects of knowledge are
constructed, not passively recorded, and, contrary to
intellectualist idealism, that the principle of this construction
is the system of structured, structuring dispositions, the
habitus, which is constituted in practice and is always
oriented towards practical ﬁmctions (1990, p. 52).

He deﬁnes practical sense as "a practical mastery of the sense of practices and objects",
that is, action dominated by the non-logic of everyday activity and habits. The habitus is
"embodied history," and can be described as formed through the social structures and
events which inﬂuence people as they develop, and which continue to shape the actions of

7

8

the person throughout life. Examples of these aspects of habitus include gender, class,
family, ethnicity, age, sexual orientation, region, language, nationality, education, and
occupation. Embodiment is the incorporation of these aspects into activity and ritual,
bodily movement, and ways of thinking about the world. The embodiment of habitus is
the expression of the past in the present (1990). Race is a concept consciously and
unconsciously applied to all people in the Southern US, and ﬁgures prominently in the
formation of habitus.

Western individualism has been explored through many anthropological and
sociological texts (Douglas, 1970; Dumont, I970; Dumont, 1977; Foucault, 1977; Gaines,
1982; Geertz, 1977; Gordon, 1988; Kondo, 1990; Scheman, 1983; Shweder and Boume,
1982), with the extreme of this concept found in North America (Gordon, 1988),
particularly in the United States. Lock and Gordon (1988) lay a foundation for the
Western concept of self in Biomedicine Examined, and how it translates into concepts of
the body, wellness, and illness. The distinguishing characteristics of Western biomedicine
include Cartesian dualism, the individual as independent from society, the objectiﬁcation
of illness, the power differential between "knower" and "known," the assumption that
technology is better, the belief that modern medicine is beyond moralistic judgments and
superstition, the concept that the human is a biochemical machine, and the dominance of
objectivist epistemology: there is only one way of truly knowing, which is through the
scientiﬁc method (Lock, 1988).

Western individualism in its extreme version in the United States sees the
individual as unitary and completely distinct from society, and often in conﬂict with

society. Society is merely a grouping of these individuals, and the core self is relatively

9

unchanged, no matter the situation or environment (Gordon, 1988; Kondo, 1990). The
self is considered an object, not a culmination of interactions. To be swayed by society or
by the group is considered weak and undesirable, with the ideal being the free agent who
can overcome society and all its trappings.‘ In hospital settings, this is apparent in the
emphasis of occupational, physical, and speech therapy in which personal independence in
daily activities and the acquisition of new skills to re-enter society is the major goal of
physical rehabilitation, not necessarily the return of a person to a social role or unit. It is
also the self’s responsibility to maintain or regain health in this cosmology, with individual
blame and responsibility for illness as the opposite side of the wellness coin.

An excellent example of this ideology of blaming the patient can be found in the
treatment of chronic pain. In the US, pain is accepted as a largely physical and
biochemical phenomenon, and many physicians prescribe heavy doses of analgesics and
narcotics to treat chronic pain.2 When a person complains of severe or ongoing pain, both
the physician and the patient have a need to ﬁnd a physical cause which can be treated
promptly. This need perpetuates a series of medical evaluations and tests that inevitably
rule out acute disease or injury. This practice is further justiﬁed by availability and

“magical thinking” surrounding the use of more and more complex technology,

 

1For an example of “free agent” psychology, see Jean-Paul Sartre’s [he Emotions: An
W (1943)-

2Physical pain is in fact a perception, usually beginning with detection of noxious
stimuli by receptors in the skin. These receptors respond by ﬁring electrical impulses
along nerves to the brain, which, through past learning and socialization, begins to
interpret what might be the source of the pain and how it might be stopped. Pain
receptors can also trigger reﬂexes, such as when an arm jerks away ﬁom a hot iron
(Morris, 1991 ).

10

contributing to fantasies of a simple solution to pain (Barley, 1988). However, when no
discernible cause is found, physicians and other health care professionals become
uncomfortable with their lack of knowledge. This discomfort, when coupled with the
patient’s display of behaviors indicative of pain, leads some medical professionals to label
the pain as “not real,” or “all in your head.” A recommendation for psychiatric therapy is
oﬁen made, which angers the patient. The implication is that the problem is created by the
patient, does not warrant serious medical treatment, and could be easily corrected if the
patient would just “act normal.” More signiﬁcantly, the patient’s motives are most often
questioned if ﬁnancial gains such as disability payments or worker’s compensation are
being sought.3

Snow (1993) explains how traditional medicine and cultural ideals among a
Midwest US. African American community may coincide or conﬂict with physician and
nurse recommendations for various ailments. A lack of follow through of
recommendations is often labeled as noncompliant behavior, and the patient may be
blamed for subsequent health problems. Health care professionals, having been
indoctrinated by training into the belief that health is the sole responsibility of the
individual, tend to place blame on the patients when the recommended treatment is
incomplete or unsuccessﬁrl (Ronald Frankenberg, 1992). The patients' actions are

thought to be inﬂuenced by ignorance and lack of motivation and frequently interpreted as

 

3These ﬁndings of a pattern of responses by health care professionals was repeatedly
noted during my tenure as an occupational therapist in chronic pain programs in Charlotte,
North Carolina, and Columbia, Missouri, from 1986 through 1991, and in
industrial/occupational rehabilitation programs in Columbia, Missouri, and Jackson,
Tennessee in 1991 and 1997-1999 respectively.

ll

noncompliant.4 Noncompliance, viewed through the lens of the daily experience of people
in difﬁcult circumstances, may in fact be more accmately identiﬁed as the embodiment of
economics (Segar, 1994; Stack, 1974), cultural identity (Crandon-Malamud, 1991;
Gofﬁnan, 1963), and resistance to an antagonistic health care system (Crandon-Malamud,

1991; Massey and Denton, 1993; Snow, 1993;).

Sequestration of “Races” in the US.

In addition to differences in treatment strategies, larger gaps are illuminated
between white and Aﬁican American concepts of self and society. As outlined above, the
Western European intellectual concept of self is of the individual who takes complete
responsibility for his or her health or illness. According to several ethnographic works, in
many Aﬁican societies, views of the self have been noted to be based more in a socially
embedded concept of self, with the person being born into a social web (Comaroff, 1985;
Field, 1960; Mbiti, 1969; Bennett, 1988; Devlieger, 1995). This concept of self makes the
community responsible for the health and growth of its members, and several authors
suggest that these concepts have remained strong within African American communities

(Stack, 1974; Snow, 1993; Mbiti, 1969).

 

‘F or additional readings on traditional medical viewpoints on noncompliance, see
Meichenbaum and Turk (1987) and Haynes, et al, (1985).

12

The Black Underclass

When considering concepts of “race” and class in the US, a phenomenon of the
black underclass becomes important to understand. The lower economic ranks of the
African American community have less social mobility, affecting a wide range of factors,
including access to health care. Massey and Denton presented a strong case for the
continued existence of housing discrimination as a major factor for the creation and
maintenance of a black underclass (1993). By concentrating African Americans in the
inner cities, housing discrimination compounded overcrowded conditions and set up black
communities for ﬁnancial disaster when economic downturns occurred. Massive and
overwhelming statistics showed that the degree of isolation ﬁom the rest of society
experienced by blacks in the inner cities is unique among ethnic groups and categorically
affects blacks of all classes. When income was controlled in several studies, and when
surveys showed that Aﬁican Americans were knowledgeable about housing prices and
supposed availability, the concenuation of blacks of all economic levels in the inner cities
was still profound. In other words, African Americans of all economic levels can be found
in concentrated areas, whereas whites are spread out in different neighborhoods based on
ecomomic class. This further indicates that afﬂuent and middle class African Americans
are experiencing barriers to living in more affluent or middle class white neighborhoods.
Even as recently as 1990, ten million applications for housing and loans were examined
nationwide in an audit which also controlled for income differences, and whites were 50 to
100 percent more likely to be approved for housing and loans (Massey and Denton, 1993).

Housing discrimination is still alive and well, and conspicuously absent from current

l3

academic and public discussions of race, racism, and poverty in the ghettos of the US.
(Massey and Denton, 1993).

Other perspectives have been used to explain the existence and maintenance of the
black underclass. William Julius Wilson postulated in The Declining Signiﬁcance of Rage
and in The Truly Disadvgtaged that Aﬁican Americans are less strongly affected by racial
discrimination than by class discrimination. The ﬂight of middle class blacks effectively
removed what economic and political power had existed in the black urban communities,
leaving the poorest of the poor to live in politically and economically powerless
neighborhoods. According to Wilson, this concentration of poverty led to dependence on
the welfare system, the breakdown of the black family, and increasing pregnancies among
unwed parents. Massey and Denton’s statistics overwhelmingly show that discrimination
is still an active and major factor, even when income is taken into account. Carol Stack
(1974) also refuted the contention that welfare dependency and concentration of poverty
led to the change in family structure (the change from mostly nuclear families to 50 to 60
percent single-headed households among African Americans between 1950 and 1980 is
well established by Hacker, 1992; Edsall and Edsall, 1992; Massey and Denton, 1993;
Wilson, 1987). J oblessness in the inner city (due to the downfall of industrial inner city
businesses along with the suburbanization of businesses and wealth) was the major factor
in making marriage a disadvantage among poor urban African Americans—a factor further
supported by the loss of welfare checks when single mothers married (Stack, 1974;
Hacker, 1992; Massey and Denton, 1993). Wilson reluctantly admitted the role of

joblessness, but seemed to cling to other explanations of changes in family structures.

 

14

Charles Murray has created furor in public rhetoric with his contention that
“generous” welfare payments create a lack of motivation to work, that this motivation is
automatically passed down to future generations, and that the ghettos are created due to
this chain of events (1980). Murray used Oscar Lewis’s concept of the culture of poverty
(1968) to establish the barely covert racist contention that “defective culture” is
responsible for the plight of inner city ghettos rampant with increasing violence and
fatherless children. The history of this skewed view of the effects of poverty can be traced
back to D. Patrick Moynihan’s report to the President on the state of the black family in
1968. Moynihan echoed the sentiments of W.E.B. DuBois (1903) in pointing out that
poverty was having extremely detrimental effects on the structure of the black family,
coining the phrase “a tangle of pathology” (Moynihan, 1968). The swift and harsh
criticism by white liberals and black leaders was based on the interpretation that blame was
being laid by Moynihan (and hence by much of the dominant white patriarchy) on the
victims of discrimination, rather than the perpetrators, and discussion of the problems of
violence, crime, and family structure were essentially silenced for nearly 30 years.
Moynihan had been misinterpreted, and liberals feared a similar backlash and alienation
from black citizens (and ultimately, voters). Hence, present-day liberal discussion of
ghetto formation has been reactionary and inadequate to contend with the conservative
rhetoric, at best (Edsall and Edsall, 1992; Hacker, 1992; Wilson, 1987). Charles Murray
and his followers will continue to dominate the discussion of the roots of the black
underclass, with devastating effects, unless academicians, social scientists, and politicians
can effectively and proactively refute the popular (among conservative whites) and

misleading rhetoric of the day.

15

These two opposing explanations for the creation of a black underclass (the
responsibility of the white power structure as postulated by liberals versus the lack of
initiation or over-indulgence of Aﬁican Americans on welfare as Charles Murray
contends) continue to polarize the debate on what is to be done now. Most white
J acksonians do not classify themselves as racist, and are greatly offended when
suggestions are made that the white power structure continues to prevent economic
advancement of African Americans. When asked to deﬁne racism, most informants in this
study deﬁned it as an individual who discriminates against people based on race.
Occasionally informants would also list “believing some races are inferior to others” as a
part of racism. None of the white informants identiﬁed themselves as racist, yet were
noted to make derogatory comments about African Americans on other occasions.
Classism has become an excepted way to categorize the have-nots, but it is often thinly
veiled racism when examined closely. Jackson continues to struggle with and deny the
racist practices which still exist, and many individuals seem to be consciously unaware of

their own racist attitudes.

Objectivism and Ofﬁcial Knowledge

Bourdieu criticizes the artiﬁcial division of subject and object in the ﬁeld of social

science:

Objectivism, which sets out to establish objective
regularities (structures, laws, systems of relationships, etc.)
independent of individual consciousnesses and wills,
introduces a radical discontinuity between theoretical
knowledge and practical knowledge, rejecting the more or
less explicit representations with which the latter arms itself

 

16

as "rationalizations," "prenotions," or "ideologies" (1990, p.
26).

By not exploring the objectiﬁcation of Objectivism, science takes no account of the
distance it establishes between observer and observed. Objectivists claim to have an
"absolute viewpoint, the 'perspectiveless view of all perspectives'" (1990), ignoring the
point that Objectivism is an ideology. Objectivism "imposes on the object norms of
construction" which clouds the understanding of more meaningful, though less "logical"
explanations (1990).
Bourdieu uses the example of language to attest to this point. Saussure's study of

language is an objectiﬁed account which renders the language lifeless:

. . . the tendency towards intellectualism entailed by

apprehending language from the standpoint of the listening

rather than the speaking object, that is, as a means of

decoding rather than a "means of action and expression". . .

(l 990, p.33)
By making language a study of the relationships between words, Saussure misses the
fundamental ﬁrnction of language: to convey meaning and expression between people.
Using objectiﬁcation in this manner asserts "the epistemological privilege of the observer",
taking no account of the division between the theoretical and the practical (1990).

Objectivism is a major foundation of the medical ﬁeld, to the extent that only

objectiﬁed knowledge receives any serious consideration (Waitzkin, 1991; Martin, 1992;
Gordon, 1988b; Lock and Gordon, 1988; Kinnayer, 1988; Lock and Scheper-Hughes,
1990; Armstrong, 1988; Gordon, 1988a; Kaufert, 1988; Koenig, 1988; Barley, 1988;
Rhodes, 1990; Bellaby, 1992; Frankenberg, 1992; Pizzini, 1992). Objectivism has its

roots in the mind-body dualism proposed by Descarte in the early seventeenth century. In

l7
attempting to justify his passion for knowledge about the body and how it worked, in a
religious climate which suppressed non-spiritual explanations of illness, Descarte
postulated that the mind (or spirit/soul) and body (the physical shell) were separate entities
(Rhodes, 1990). By the 18005, the scientiﬁc method upset the balance (Kuhn, 1970), and
became the dominant epistemological process for explaining illness. One of the effects of
this ideologically positivist domination has been the delegitimizing of behavioral,
emotional, or social ills-all categories which are difficult to isolate to unitary individuals.
Social ills or problems, such as racism and its effect on the economy and health of a
people, have an especially negative connotation in Western ideology, as these ills would
conﬂict directly with the individualized self concept. The person steeped in the
individualized concept of self would be likely to blame the social ills on the weakness of
those individuals who were suffering, and who had not been able to pull themselves up by
their own bootstraps.5 Later examples will exemplify the conﬂict between individual-
oriented self concepts and those who view history as embodied in the present.

Time is a concept which also has multiple interpretations, with the industrialized
concept of time dominating the ﬁeld of biomedicine. In "Your Time or Mine: Temporal
Contradictions of Biomedical Practice," Ronald Frankenberg (1992) outlined a critical
analysis of time within the ﬁeld of biomedicine, and concluded that the ﬂexibility of time
scheduling was inversely related to status and power within the hospital.

Frankenberg uses the example of the revolt of women against inductions and

Caesarean births to illustrate the control over patients' lives through control of time. Since

 

5For more detailed discussion of the Western individualized concept of self, see
Giddens, 1991.

 

18

most births occur at night, the timetable for inductions and Caesareans has been moved
largely to the daytime hours by physicians. Since the "patients" violated the physicians’
private time at home, the physicians then felt free to violate the boundaries of the bodies of
their patients.

Frankenberg also asserts that the conception of illness is contextualized within
each culture by the perception of time and chronicity. Using an example of a tuberculosis
hospital, Frankenberg describes a situation of the medical resident who, when conﬁ'onted
with the case of a women whom he thought had been in the hospital for two years, stated
"We have to get her out of here." Upon learning that she had not been in the hospital
continuously but had been in and out, the resident changed his mind and argued that the
patient should in fact stay longer. In this case, the woman's condition had little or nothing
to do with her date of discharge, but the amount of time spent in the hospital (as perceived
by the resident) was the determining factor. Frankenberg provides a compelling argument
for the control of time by health-care practitioners in Western biomedicine, calling for a
renewed critical analysis of time control in all research projects involving illness.

Adams (1992) supports this argument with an analysis of illness within the
continuum of time, and how the concept of time is used to judge a person's wellness or
competence. She maintains that "Orchestrated cycles of activities when desynchronized or
speeded up may best be conceptualized as stress which in turn may result in ill health and
accidents." Adams [uses examples such as Korsakow Syndrome, depression, and mania to
illustrate how loss of ability to orientate within the birth-death continuum can cause a
clock-imposed illness category upon the person afﬂicted. In further development of her

analysis, Adams discusses the "non-temporal principle of invariant repetition." Rhythms of

 

l9
nature "entail repetition with variation, the essence of temporality." When the objectiﬁed
clock time is used to regulate a factory, for example, the variation inherent in natural time
is destroyed. This may result in illness such as repetitive strain injuries from performing a
single movement or task over and over at a greatly increased speed. Timeliness and the
importance of adhering to the institutional schedule are critical aspects of daily activity in
the hospital setting. In later chapters, I will expand the concept of the commoditization of

time, and how this is used to reproduce the hierarchy of power in the medical institution.

An Anthropological Analysis of Disability

Self-identity in this society is intimately connected with the body, as illustrated in
the extreme by the "disabled" body. The term "disabled" is controversial in the community
of people with disabilities, as it tends to identify the person as an objectiﬁed disease. The
term will be used as little as possible, with more humanizing (and perhaps more wordy)
terms substituting as needed.

In many societies, however, the body is much less important than relations with the
community and with faminICrwo major theoretical models of disabiliQhave been

I

. developed within the social sciences: [Ewing Goffman’isociological model of deviance
(1963), anriRobert Murphgsianthropological model of liminality based on the theories of
Van Gennep and Turner (Murphy, et al, 1988). While much can be learned from the
examination of these illustrations, they remain inadequate when considering non-Western

cultural regions. Ingstad and Whyte (1995) offer a cross-cultural perspective on disability,

highlighting the differences in deﬁnition, social stigma, and self-identity in varying

 

20

contexts. Although the theoretical constructs in this most recent work are weak or absent,

I relate the accounts to the theory of praxis as postulated by Bourdieu (1990).

Subject/Object

"The anthropologist is a positioned subject, one who occupies a position or

structural location and observes with a particular angle of vision. . . . The

notion of position also refers to how life experiences both enable and

inhibit particular kinds of insight" (R. Rosaldo, 1989, p.37).

My own background predisposes me to the enablement and the inhibition of insight
to which Rosaldo referred. My father is a disabled Vietnam veteran who has experienced
a gradually worsening physical condition throughout the past 28 years. His experiences as
well as my interpretations of them led me to a career in occupational therapy in which I
have encountered many people with different disabilities. Through these personal
experiences, I am able to capture the subjective point of view to which Bourdieu alluded,
while my position within the health care ﬁeld may inhibit my insights regarding the
experience of patients within the hospital milieu. I have attempted to counter these
inhibitions through the critical analysis of the Western medical system guided by
theoretical models in medical anthropology. My intention is to provide a critical and
analytical voice in the ﬁeld of rehabilitation, in hopes that services to patients will become

r\

increasingly meaningful and empowering) My intention in this chapter is in part to provide

\

a preliminary theoretical exploration of disability from an anthropological perspectivEx

 

21
Stigma

Erving Goffman presented a model of social deviance in W;
W (1963) in which the person with a disability was
marginalized to the extreme. Goffrnan deﬁned stigma as "an attribute that is deeply
discrediting,” and researched early Greek writings in which the disabled person was a
"blemished person, ritually polluted.” Goffrnan asserted that as we encounter people in
daily social situations, we automatically assess their "social identity" which could include
such constructs as personal characteristics, social status, and occupation. When
encountering a person with an obvious physical disability, the entire social interaction is
tainted due to the stigma of disability, which tends to reduce the humanity of the person
with the disability. The blemish of the disability is generalized to other characteristics,
which further inhibits normalized social interaction.

The stigmatized person in Goffrnan's model intemalizes the category and is ﬁlled
with self-hate and self-derogation. The person may attempt to "correct his condition
indirectly" by rele sports or excelling in a former activity. According to Goffrnan,
stigmatized persons include all marginalized groups such as minorities, criminals, people
with mental illnesses, and women, and they tend to have similar "moral careers":

"Persons who have a particular stigma tend to have similar learning

experiences regarding their plight, and similar changes in conception of

self—a similar 'moral career' that is both cause and effect of commitment to

a similar sequence of personal adjustments" (p. 32).

As a personlleams of their stigma, he or she will confront prejudice in others and

helplessness in themselves. Goffrnan claims the role of the medical professional as having

the "special job of informing the inﬁrm who he is going to be.” Goffman posits the

‘F'L J—‘h’.’

 

 

22

medical professional as the agent of change, rather than the patient who must create a new
identity for him or herself. This frame of reference reﬂects the ultimate arrogance of a
medical system at its height of power and autonomy.

Goffrnan provides a few examples of personal statements from people with
disabilities, but does not give voice to particular informants. He often refers to the
temporarily able-bodied as "we normals" and to the person with a disability as "the inﬁrm"
or "the cripple,” which reiﬁes the divisions about which he writes. I-Iis emphasis on stigma
is illuminating, but his categories of the stigmatized are so broad as to make them useless,
and he makes no distinctions between types of disability. Goffman never questions or
even recognizes the assumptions he has made about the authority of the medical
professional in the identity formation of the person who is suddenly faced with a disability,
and in fact never gives an operational deﬁnition for self-identity, ego identity, or "normal.”
Perhaps the greatest problem in this work is the lack of realization that perceptions of
disability vary according to cultural context, to which Goffman makes no reference.

These problems severely limit any application of Goffman's theory to a cross-culttual or

even cross-class, -ethnicity, or -gender study.

Liminality and Communitas

Robert Murphy, et al., outline a model for disability based on the work of Arnold
Van Gennep and Victor Turner in "Physical Disability and Social Liminality: A Study in
the Rituals of Adversity" (1988). Van Gennep (1960) postulated that life crises have three
stages: separation, transition, and reincorporation. Rituals in "traditional" societies were

used as an example by Van Gennep, and later by Turner (1967) to describe these stages.

 

 

23

Separation occurs at the beginning of the crisis or of ritual, before which the person has a
certain social identity. In the transition stage, the person suspends all former identities and
becomes liminal to the group. The ﬁnal stage returns the individual to society with a new
identity. Turner argued that during the liminal stage, social relations are without divisive
structures or categories, and that those who are liminal become social equals. Murphy
contends that people with disabilities experience this type of liminality with the onset of a
disability, but society has no expectation of that person as leaving the liminal state. As

Turner would say, "they are suspended in social space without ﬁrm identity or role

7. a- ~rc..n.aiii‘a

 

deﬁnition" (1967). Murphy, et al., may also be the ﬁrst group of researchers to use
ethnography of the "disabled community."

This model may be more applicable to varying contexts than was Goffrnan’s.
Murphy found that the complete authority of the staff and egalitarian relationships
between patients were very similar to Turner's traditional societies. Murphy also
distinguishes between the stigma of disability and other stigmatized categories, as
disability can be acquired by anyone, whereas other categories tend to be "inherited.”
Murphy criticizes positivistic studies of disability due to the tendency to objectify disability
and to make it a static condition rather than a process.

While Murphy has described a stimulating model of cultural symbolism, he has not
examined the category of disability as a "Western" construction. European and Western
societies are unusual in that they have large numbers of people with adult-onset disabilities
(due to the surviving of wars, automobile accidents, and violence through enhanced
medical care) and that these societies categorize people according to physical function

(Whyte and Ingstad, 1995). Murphy may be correct about egalitarian relations between

24

persons with disabilities while in a hospital setting, but personal experience has shown me
that disability does not erase divisions of ethnicity, class, or gender which people embody
throughout their lives. To say that a person is no longer considered primarily of these

groups is to say that the person and society has forgotten their social or embodied history

(Bourdieu, 1990), an argument which I ﬁnd to be highly unlikely.

Disability and Cosmology

Benedicte Ingstad and Susan Reynolds Whyte have taken an important step by
collecting. studies of disability from various societies and regions of the world in Dmhrmy
W (1995). In their introduction, Whyte and Ingstad offer deﬁnitions used by the
World Health Organization. An impairment is "any loss or abnormality of psychological,
physiological, or anatomical structure or ﬁrnction" (WHO, 1980), whereas a disability is
"any restriction or lack (resulting from an impairment) of ability to perform an activity in
the manner or within the range considered normal for a human being" (WHO, 1980). A
handicap is a "disadvantage for a given individual, resulting from an impairment or a
disability, that limits or prevents the fulﬁllment of a role that is normal (depending on age,
sex, and social and cultural factors) for that individual" (WHO, 1980). The WHO made
an effort to place cultural context in the picture, but failed to see that the divisions were
based on Westemized conceptions of physical function, ignoring "the way in which culture
structures whole life worlds, imbuing individual variations of the human condition with
signiﬁcance more far-reaching than the simple ability to perform a given activity" (Whyte
and Ingstad, 1995, p.7). It is only through the export of Westerrrized rehabilitation

medicine that disability is becoming a more solid category of person in societies where

25

handicaps are rooted in very different concepts. “Disabled community” may therefore, be
a term limited in its use to biomedical systems, and then it must be used carefully, avoiding
stereotyping an extremely diverse group of people.

Major differences have been noted in the social identity and relations of pe0ple
with disabilities in "complex,” stratiﬁed societies compared to small-scale societies.6
Among the Songye of Zaire, physical anomalies at birth fall into three categories.
"Ceremonial children" often have special powers such as the ability to heal; these children
are usually of an unusual presentation at birth or twins (Devlieger, 1995). "Faulty
children" have disabilities such as cerebral palsy or other motor impairments, and are an
indication of distorted relationships. "Bad children" are inhuman and come into the world
to die; these children include albinos, dwarfs, and children with hydrocephalus. As
Devlieger points out, "what is central for the Songye understanding of physical disability is
not so much the classiﬁcation of bodily singularities as the embeddedness of embodied
persons in networks of relations" (1995). It is especially important for people of the
Songye to determine how and why the child is different (witchcraft, the actions of the
mother or father, family relations), so as to determine the category of the child.

Ceremonial children are given special treatment, faulty children are cared for, and bad
children are "socially amputated" from the society.

The Punan Bah of Sarawak characterize a person's identity based on the socially

recognized father, establishing a kinship identity. Illegitimate children (those born without

 

‘5 "Small scale societies" can include smaller sections or subcultures within larger
societies, such as noted by Nora Groce in her study of deafness on Martha's Vineyard

(1985).

26

a social father), twins, witches, and spirit children are all considered nonhmnan.
Personhood can only be recognized through marriage and children; therefore, the people
with disabilities are found to be cared for and considered a person if they marry and have
children or are given children. The person with the physical abnormality is given tasks
which they have the ability to complete, and the rest are divided among kin (N icolaisen,
1995). Talle found similar cosmologies with the Masai (1995).

Handicaps based on individual ability to function are not limited to "Western"
societies. Helander found that the concept of personhood among the Somali is based on
individual differences and abilities, and on "ﬂexibility, growth, and change; thus inﬁrmity,
which inhibits this, is a dirninishment of personhood" (1995). This view of the person with
a disability was incompatible with the concept of rehabilitation, as the incurable conditions
deserved care but were unchanging and therefore unworthy of efforts to improve the
disabled person's abilities.

Europeans with multiple sclerosis were found not to be concerned so much with
social relations as with their own concepts of the self and the body. Reﬂexivity was a
consistent theme in the narratives (written accounts as well as interviews) and consumed
- much of the energy of the newly diagnosed person. Biomedicine played a prominent role
in the formation of body image and experience (Monks and Frankenberg, 1995). Murphy
also provided an analysis of social encounters between people with disabilities and the
able-bodied in the United States, emphasizing the culture of the "body beautiful" (1995).
These themes relate closely to Giddens’s concept of the reﬂexive modern self in

-‘J. ' u s «.n . ‘ .0.‘ ' s ' e . d A i .! - pate More. ‘ u ‘e (1991). Giddens

contends that reﬂexivity is the project of the modern self, while "personal meaninglessness

27

. . . becomes a ﬁmdamental psychic problem in circumstances of late modernity" (p. 9).
The sequestration of experience is the root cause of this meaninglessness through the
separation of the person from existential events, such as illness and death (as illustrated
brilliantly in Aldous Huxley's Bmve New World). This separation prevents the self from
considering the meaning of life and its end, with mediated experience such as TV replacing
real events through "reality inversion", in which the soap Opera seems more real than

actual events.

Embodied History: Toward a Theory of Identity

The collection edited by Ingstad and Whyte (1995) brings together informative
ethnographies which have attempted to compare disability categories across many
societies. However, Ingstad's point about the concept of disability being very Eurocentric
should not be taken lightly. While we should continue to examine disability, it should be
within the context of particular societal cosmologies (see Ingstad's work on the export of
"rehabilitation" in the name of development in Botswana, 1995). Some authors (Murphy,
et al, 1988; Murphy, 1995; Goffrnan, 1963; Schl'issler, 1992) have even failed to recognize
that self-identity after disability can differ widely within a cultural region due to differences
in gender, class, ethnicity, cosmology, and economics. The habitus of people with
disabilities must be explored when explaining how the disability affects self-identity.

The age of the person at the onset of a disability or disease is of singular
importance in the development of self-identity in Western society. Giddens’s concept of
ontological security is based on the development of trust in an ordered existence partly

through routinization of daily interactions and activities:

28

"The maintaining of habits and routines is a crucial bulwark against

threatening anxieties, yet by that very token it is a tensionful phenomenon

in and of itself. . . The discipline of routine helps to constitute a 'fonned

framework' for existence by cultivating a sense of 'being', and its separation

from 'non-being', which is elemental to ontological security" (1995, p. 39).
If a person is born with a disability such as cerebral palsy (CP), the mobility, speech, and
(sometimes) cognitive problems which exemplify CP are incorporated into the daily
routine and habits of the person and family, leaving ontological security relatively intact as
long as the caretakers are careful to develop this as with other unaffected children.
Giddens appropriately labels this security as the "protective cocoon." With the sudden

onset of a disability in early adulthood such as paraplegia caused by an accident, however,

ontological security is severely challenged due to the loss of control of the body and a
l

l
I
l

complete disruption of daily habit and interaction: the protective cocoon has been broker/l.”
Giddens’s development of the concept of ontological security ﬁts well with the

Westernized preoccupation with the body and its functions, but it may not ﬁt so well with
cosmologies wherein the person is conceptualized primarily in terms of kin networks.
These societies also have daily habits, typical tasks, social interactions, and primary care
givers, but why do these not translate into a conception of disability as "loss of bodily
function"? Giddens’s failure to consider non-Eurocentric cosmologies limits the credibility
of his theory as an exploration of "globalization" except as the exporting and
commoditization of Western technology and ideology.

{Another factor which affects self-identity of the person with a disability is the
cause of explanation offered for the disabilityélThe most common cause of disability
among young adult men in the US is motor vehicle accidents, many of which are caused

by the use of alcohol when driving. The newly paralyzed young man not only has to deal

29

with his own grief and guilt about having been personally responsible for his condition (or
anger at someone who was responsible), but medical professionals and family members
often remind him about his role in the accident. Many of these types of injuries are
compounded by minor brain injuries, which cause further changes in personality
characteristics and cognitive abilities. Ontological security may be not only interrupted,
but destroyed for many years.

Religious beliefs may also inﬂuence how the person thinks of him or herself, as
with the case of a young woman I met during my pilot study in Lansing, Michigan, who
had recently been diagnosed with multiple sclerosis (MS). Ruth Wilson was a member of
a fundamentalist Christian church but felt that she had not been living up to the high
standards in which she believed. During therapy one day, she told me she thought that
God had taught her a lesson by giving her MS, as she had been partying and drinking too
much on the weekends. Her sense of guilt made her depressed, but at the same time
mobilized her to change certain routines in her daily life.

Elderly people in this society are socialized to expect a gradual decline in their
faculties and abilities; therefore, the onset of a disability tends to reinforce this concept.
The perceived social worth of the elderly in the US. is low, and disabilities such as strokes
or Alzheimer's disease further compound this tendency. The young adults with whom I
have worked in rehabilitation usually conclude that life must still be lived, and want to
releam how to go about daily activities (with varying degrees of acceptance). Many of the
elderly people in rehabilitation, however, have given up any hope of return to "normalcy,"

oﬂen deferring to family members for decision-making and for assistance with daily

30
activities.’ Depression and feelings of hopelessness and worthlessness are common in this
age group.

Ethnicity may have signiﬁcant effects on self-identity of people with disabilities
through cultural practices and cosmologies, and through the double je0pardy of being of
an ethnic minority group and being disabled. African Americans, for example, have
experienced marginalization and discrimination in US. social, legal, and medical
institutions (Hine, 1989; Edsall and Edsall, 1992; Dressler, 1991; Massey and Denton,
1993; Thomas, 1992) and have received fewer resources, increasing their mistrust of
hospitals and medical professionals (Snow, 1993). The constant scrutiny and awareness
of skin color to which Aﬁican Americans are subjected in this society contributes to
mistrust of medical institutions, and folk traditions which are still consistently used remain
undisclosed due to this mistrust and to a history of scorn from the medical profession
(Hacker, 1992; Snow, 1993; Morrison, 1981; Angelou, 1969).

The identity of being black in this society is ingrained through nearly every
interaction with whites, which brings into question Murphy's assertion that former societal
divisions are erased when people with disabilities encounter others with similar conditions
(Murphy, et al, 1988; Murphy, 1995). African Americans, who already experience the
"invisibility" of which Murphy speaks due to their ethnicity in this racially polarized
society, encounter increasing invisibility when faced with a disability. The effect on self-

identity can translate into an ever-widening gap between the narrative of the self and the

 

7 This may be in part the expectation of elderly working class people that the
retirement stage in life is to be used for "resting,” not developing a new way of life. This
tendency may change as people live longer, and as younger age cohorts reach the elderly

years.

31
"ofﬁcial" narratives of "mainstream" (white, able-bodied) society. This gap not only has
far-reaching effects on self-concept, but can ﬁrrther complicate relations between the
mostly white rehabilitation professionals and Aﬁican American patients.

Economic status is drastically affected by the onset of a disability, especially for
working class people who depend on manual labor for employment. This group usually
lacks long term disability insurance, and may not even have access to medical insurance.
The high cost of rehabilitation (5600-900 per day just for the hospital room and at least
three hours of therapy per day for several weeks at $60-100 per hour) quickly creates a
lifetime of debt or bankruptcy, at least until the person can qualify for Medicaid (or the
state’s equivalent, such as Tennessee’s Tenncare). The person with a new disability is
suddenly plunged into poverty, with little chance of becoming upwardly mobile. Seeking
disability beneﬁts can become a new career, requiring hours of paperwork per week
applying for disability beneﬁts and insurance coverage. To qualify for beneﬁts, a person
with a disability may be encouraged to exaggerate, stretch, or even worsen their own
deﬁcits; the payments rarely cover the increased living expenses which the disabled
experience (due to the need for special equipment which insurance does not cover,
adapted housing, and personal attendants) (Segar, 1994; Whyte, 1995; Sackett, 1976).

I have only touched the surface of exploring the embodied history of people with
disabilities in the Midwestern and Southeastern regions of the US. An expanded
theoretical model is needed in the social sciences to trace the thread of self-identity
through the maze of cosmology, ethnicity, gender, class, age, and disability (Steedly,
1993; Kondo, 1990). Goffrnan (1963) and Murphy, et a]. (1988), have provided some

groundwork, and Ingstad and Whyte have provided access to ethnographies of people

32

with disabilities in various societies. The category of "disabled" should not be used,
however, without a critical analysis of the concept in the intended context. Further
explorations are also needed in analyzing self—identity within subcultures of the US,
including the Aﬁican American community, in order to understand relations between
patients and staff.

The theory of praxis best accounts for all of the complexities of embodied history
when a crisis such as the onset of a disability disrupts the narrative of the self. Themes
such as the conception of the body, the objectiﬁcation of disease, the use of technology,
and the reiﬁcation and reproduction of the status quo through the rehabilitation process
also require ongoing study. Self-identity is ultimately embedded in all of these concepts
and more, providing a wide ﬁeld for the illumination of personal narrative, social
difference, and individual and collective agency within expanded psychological

frameworks.

CHAPTER 3
METHODS
The major research questions I sought to answer with this document included: I)

How was noncompliance or compliance interpreted by patients and staff? 2) Who was
labelled as noncompliant, and were there trends in this process? 3) How does the
rehabilitation environment reproduce “noncompliance?” In order to address the
interpretation issue, daily participant-observation was punctuated with contemporary oral
accounts and interviews. Historical data was important to establish the cultural,
economic, and social changes which affected the present pOpulation of Jackson. Without
tracing the history of race relations in this region, it would have been impossible to
interpret the current climate of separation and doubt. Empirical data was added to
emphasize the inconsistencies between general population statistics and rehabilitation unit

statistics. The following pages review methods I used in data collection.

A Evaluation of Historical Data

The only written account speciﬁcally of Jackson and Madison County area history
isthe 1946i ,- aro,‘ [e tn 0 ack or. c. M-'IJ_ o _I_ e __l- r-
W by Emma Williams. This work was originally
written in 1946, with reprints in 1972 and 1986. The copy I was able to access belonged

to a former assistant to Mrs. Williams. It continues to reﬂect the common racist views of

34

the times, and is still widely respected as the historical account of Jackson and Madison
County (emphasis mine). The book of 534 pages mentions “Negroes” on 22 pages, with
all but one accormt portraying black people as lazy, mean, chronically slow, and in need of
discipline. “Miss Emmy,” as the author was affectionately called, taught high school for
many years at Jackson Central High School, which was the all-white high school.1 Her
racist viewpoints, especially vocal in comparison to other white citizens, were well-known
by those who worked closely with her. I encountered little knowledge or objection in the
white community about the content of the work, and the pro-secessionist views are still
prominent in the region. “Miss Emmy” served as the cormty historian for several decades
according to her former assistant. The current historian2 uses Williams’ book as a major
resource for presentations to community organizations, and the local library has an entire
cabinet display devoted to this author. Although this viewpoint of the “Negro” was the
social norm of whites at the time of its writing, the fact that this account remains the only
historical documentation of post-Civil War Jackson, and has continued to be referenced
without critique is indicative that Jackson has not dealt openly with its recent racist past.
No history of African Americans in Jackson or Madison County has been written to date.

I obtained information on history after World War II from various interviews, from The

 

1This high school merged with Merry High School (located across the street) in
1970 to form the integrated Jackson Central Merry High School. Though these schools
have been integrated for some time, the difference in quality and upkeep of the buildings
and facilities is quite glaring. The Central Campus was constructed of stone with a
uniform design, athletic ﬁelds, and has a large arena on campus. The Merry Campus was
constructed of less dlnable materials, and is still in obvious need of renovation.

2The position of County Historian is appointed by the County Mayor. Emma
Williams was the ﬁrst County Historian. The current Historian is Harbert Alexander, Jr..

 

 

 

35
laclmnm newsPaper, IhLthistiaandex newspaper, and from TheMemEQnan
newspaper.

I reviewed W daily for 3 years from 1995-1998, and reviewed
selected editions ﬁom the 19605 which coincided with signiﬁcant historical events in
Memphis, Tennessee, Selma, Alabama, and throughout the South. I chose to review
periodicals (W, W) dating shortly before, during, and after
historically signiﬁcant events, such as the Birmingham bus boycott, the Sanitation
Worker’s Strike in Memphis, or the assassination of Martin Luther King, Jr. IhelacLscn
Sun purposefully did not cover Civil Rights era news, except for the assassination of
Martin Luther King, Jr. (the editorial staff was all white, and did not wish to print these
stories; stories concerning the war in Vietnam took precedence). The front page story
reporting the assassination was not written by a local reporter, but was retrieved from the
Associated Press wire. Johnny Malone, a reporter for The Jackson Sun in the 1960s
(currently a Senior News Editor for 11]; Jackson Sun), was allowed to print a story on the
inside of the paper two days after the assassination announcing a rally of “Jackson
Negroes” on the following day. Three days after the assassination, Mr. Malone reported
(again, buried on the inside in a column less than 6 inches in length) that over ﬁve hundred
“negroes” had rallied peacefully in Jackson. No other coverage of civil rights activities
were reported in W until the latter 19703. The current newspaper staff is
ethnically diverse, and has given coverage to Community Treasure Awards, 3 program
recognizing signiﬁcant contributions of older Aﬁican Americans in Jackson and Madison
County, as well as stories on the church burnings in the past 4 years, and other stories

covering race-related issues. When asked about the few civil rights activities (such as this

36
peaceful rally, or the Woolworth Lunch Counter Sit-In), most African American and white

citizens are not aware that these events even occurred (Schneider, 1999; other interviews
of informants by author).

W was the main periodical for the Christian Methodist Episcopal
Church, published and founded in Jackson, Tennessee beginning in 1867. It is the second
oldest black periodical in the United States. I again reviewed the paper on selected dates
(on microﬁhn in the local public library). This newspaper (it later became a magazine)
rarely printed politically charged articles in its early years, but by the 19505, occasional
editorials regarding civil rights were included. The editorials urged integration and
positive regard to white institutions and individuals (Murchison, 1954a; Murchison,
1954b; Murchison, 1954c; Merriweather, 1964).

mm is a weekly newspaper published by the National Newspaper
Publishers Association3 which targets the Aﬁican American community in Jackson, was
begun in 1989 and is a signiﬁcant source of advertisement to the black community. I
reviewed ﬁfty weekly issues of The Metro fem from June, 1997, to May, 1998. It is
the only local periodical which regularly addresses issues of racism, institutional racism,
and inequality, as well as other social concerns of the Aﬁican American community in

Jackson.

 

3The National Newspaper Publishers Association is an Aﬁican American publishers
assocation. Each copy of W contains this statement: “Credo of the Black
Press: The Black Press believes that America can best. lead the world away from racial and
national antagonims when it accords to every person, regardless of race, color or creed,
ﬁrll human and legal rights. Hating no person, fearing no person, the Black Press strives
to help every person in the ﬁrm belief that all are hurt as long as anyone is held back.”

37

Local librarians, especially those in the Tennessee Room at the Madison County
Public Library in Jackson, were helpful with vertical ﬁle information, microﬁlms of
newspapers, and recommendations for accessing journal articles. Libraries I accessed
included the Madison Cormty Public Library in Jackson, Lambuth University Library in
Jackson, Lane College Library in Jackson, University of Tennessee-Martin Library,
University of Memphis Library, and University of Tennessee--Memphis Library. Other
written sources of the history of West Tennessee included articles in W
W journal, speciﬁcally by a local reference librarian and archivist
for Union University in Jackson (Baker, 1994 and Baker, 1995). I found voluminous
writings on civil rights in Memphis at the University of Memphis library. Very few of
these writings or books were available at any of the Jackson libraries. Lane College, an
all-black college in Jackson founded by the Christian Methodist Episcopal Church
(formerly the Colored Methodist Episcopal Church), had a library rich with historical
information on the CME Church, but had no materials on the history of Jackson or civil

rights activities.

Participant Selection and Data Collection

Following the approval from the hospital Institutional Review Board for my
research project in March of 1997, I was able to begin interviewing patients, families, and
staff members. During two and a half years of ﬁeldwork, I was involved in daily
participant observation, with 75% of that time spent in hospital or clinic settings as an
observer or actively participating as an occupational therapist, 20% spent in the

community, and 5% in informants’ homes. I selected subjects based on my access to them

 

38

and to their therapists dming therapy sessions or team conferences. The subjects
consisted of the following: those patients who had been labeled as “noncompliant” and the
family and staff members connected with them (approximately 100 people), patients who
had not been labeled as noncompliant (approximately 100 people), and the general public
encountered in a variety of daily interactions as a source of general information about
people in the Jackson area. I selected seventeen key informants for more lengthy
interviews and observations to represent a variety of class, race, gender, and position
(patient, professional staff, non-professional staff, student/intern). These seventeen key
informants were selected based on accessibility to me, and I made an attempt to access a
variety of informants. See Table 1 for identiﬁcation of these informants. Eleven of these
seventeen key informants were not originally native to Jackson, due to a variety of
reasons: 1) informants from Jackson tended not to be very outspoken or willing to discuss
difﬁcult issues, 2) my own status as a non-native tended to net fewer natives as
informants. It should be noted that the most prominent informants (Daryl Kincaid,
Shirlene Mercer, and John Watson) were Jackson natives, and another prominent
informant, Toni Proctor, was from Memphis, but had spent most of her life in Jackson.
Semi-structured interviews were conducted in a variety of settings, including the hospital,
homes, and public places.4 Due to the challenges noted here with interviews, I was
prompted to use daily interactions in Jackson as major sites for data gathering. Public

interactions were numbered in the hundreds over a period of three years.

 

4For a sample of questions used in the interviews, see Appendix A.

 

39

Written ﬁeldnotes were the most common mode of collecting data during my
participant observation, with historical documents and media as the second most common
form of data. Interviews were occasionally tape-recorded. Early in the ﬁeldwork process,
I noted that many patients and staff members were reluctant to have interviews recorded,
and spoke more freely when interviews were conducted less formally and in a
conversational style without a tape recorder. When I could not tape-record interviews, I
took more copious notes with care to record speciﬁc quotes. My interviews ranged from
1 1/2 to 3 hours, and I observed each patient for eight to two hundred seventy-ﬁve hours.
As my time between work, interviews, and family became less available, I concentrated my
writing to particular events or interactions, organizing my ﬁeldnotes (written one to three
times per week) arormd the theme of race, racism, and compliance, with comparisons
made between patients and staff members. I focused my ﬁeldwork on events,
conversations, and interviews which brought perceptions of race, compliance, and culture
into stark relief against the background of everyday interactions. I avoided physicians as!
informants, as the dynamics of physician interactions are beyond the scope of this
document. While physicians remain an integral part of the rehabilitation team, therapists
and nurses interacted with the patients for a vast majority of the time, and physicians had
signiﬁcantly fewer interactions with the patients. Staff members chosen for interviews
were selected based on their close working relationships to patients who had been
interviewed.

I began the selection of informants for life histories with observation of and
participation in team conferences in which patient cases were discussed and reviewed.

The team conference was a weekly meeting focused on treatment and discharge planning,

40

Table 1: Race, Gender, and Position of Key Informants“

Patients

Aﬁican Americans
Women

Men

White Americans
Women

Men

Latino Americans
Women

Staff
Aﬁican Americans
Women

Men

White Americans
Women

Men

Grace Sirnon
A.J. Porter
Ronald McGee
Darryl Kincaid
Arthur Deaton

Georgia Nimke
Josephine McGregor
Charlie Jones

J irn Roche]

Maria Sanchez

Monique Stapleton
Toni Proctor
Trudy Smith

John Watson

Jean Forbes

Jackie Hatﬁeld

Bob Burkeen

*F or more detailed information on these participants, see Appendix B.

41

md involved all therapists, nurses, doctors, social workers, and other professionals
iarticipating in each patient’s care while in the hospital rehabilitation unit. Team
onferences are a requirement of the Commission on Accreditation of Rehabilitation
'acilities (CARP), and are held for the purpose of communicating goals of each discipline,
nd to ensure discharge planning. CARP also requires patient and family input as team
members, with documentation to show that this has taken place (1997). This meeting was
re most common formal setting for discussion of noncompliant patients.

I selected some informants based on my own observations and experiences
rorking with patients and staff. I also solicited assistance from other occupational,
hysical, and speech therapists, asking them to inform me of patients who seemed to have
:sues with compliance. Direct observation of staff and patient observations in
epartrnents other than my own (such as going to the physical therapy gym) was not well
ccepted, unless the primary therapist in question had approached me to identify a
articular patient as noncompliant. In other words, the therapists in some departments
rere very uncomfortable with having their interactions observed unless they had
olunteered a particular “problem” patient’s name.

The interview questions (see Appendix A) were used as a vehicle for gaining
etails about the key informant’s background, while establishing rapport until the pressing
sues were broached. Due to the social taboo against discussing or pointing out negative
;pects of life in Jackson, or being critical of pe0ple or ideas in general, subjects such as
rcism, noncompliance, and negative emotions were avoided by most informants. In order

. prompt informants to go beyond this “code” to deal with more controversial issues, I

rent more time in daily interaction and participation with them to develop deeper rapport.

 

42

questioned them more directly as incidents occurred, to explore immediate emotional
:sponses which might later have been suppressed. While the information gained in the
terviews was helpful in creating a whole picture of the person’s habitus, the bulk of the
:h data came from participant observation in the daily life of the community. Weddings,
nerals, parades, ﬁmd raisers, and school events, as well as daily activities in. the hospital,
“ovided insights into perceptions and constructs which would not have been accessible
rough direct questions. Directness was considered a social ﬂaw in this community,
erefore indirect methods of learning were more meaningful in content. The social
»nstruction of race, racism, and compliance (or lack thereof) were revealed as
mdiscursive constructs during candid interactions and chance discussions.

The themes around which I analyzed the information included race, racism,
sability, and compliance. Race was chosen as a theme due to the common view among
formants in the community of Jackson that race is a dominant factor in determining past,
esent, and future circumstances of a given individual. Although this was rarely directly
rted, the review of media, interviewee answers, public interactions, and ﬁeldnotes about
ily interactions revealed a tendency for people to categorize individuals primarily as one
:e or another, then added other factors perceived to be less descriptive than race, such
gender, occupation, or neighborhood of residence. When writing my ﬁeldnotes, I
etc a brief analysis of them ﬁrst, then later reviewed the materials for a more sustained
alysis. I then analyzed my data through a full review of my ﬁeldnotes, highlighting
ssages with the dominant theme present, and began interpreting the actions and

rtements of my informants.

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43

Racism was also examined as a theme in ﬁeldnotes, interactions, interviews, and
media. I collected three years of articles in the local newspapers on stories dealing with
race or racism, reviewing them for assumptions, constructs, and trends in reporting. I paid
particular attention during interactions when informants expressed racist viewpoints,
comparing them to earlier statements made when being pointedly asked about racism. I
paid particular attention to comments regarding prominent African American citizens in
the community, such as Shirlene Mercer, or Wesley McClure, president of Lane College.

Disability and compliance were constructs that were very important to staff
members in the hospital, but were not important or even familiar to key informants who
were patients. The staff members immediately categorized patients into disability groups
by diagnosis, and most held a coherent view of the patient as a person with a certain type
of disability throughout their interactions with patients. The patients seemed largely
unaware of this classiﬁcation system which was so important in assigning of staff team
members, room assignment, or types of activities expected of each diagnostic group. For
this reason, the construction of disability as an entity unto itself was explored in Chapter
Two.

Compliance was also an important construct for staff members, but not necessarily
by patients. Compliance or noncompliance was frequently, though not consciously, used
to delineate which patients deserved more attention and resources. Fieldnotes were
reviewed to determine which passages dealt with which themes, with my own
interpretations analyzed as well as interpretations of informants. I selected some passages
in their entirety which contained ready examples of the theme, while I reinterpreted other

passages or events to highlight nondiscursive constructs.

 

44

The methods I used in this study included oral histories and interviews, historical
documents and books, newspapers, and participant-observation, with the latter category
providing the bulk of data. Very little written history exists regarding Jackson-area civil
rights, race, class, or medicine when compared to the strife in Memphis, as conﬁrmed by
area historians, librarians, and newspaper editors. The local newspaper was reviewed
daily and searched for phrases such as “African American,” “race,” “racism.” I selected
ﬁeldnotes and interactions dealing with these themes as well as with disability and
compliance, with ethnographic analysis and interpretation heavily emphasized. These
methods were selected to reveal the nature of subconscious perceptions and the social

construction of race in a Southern community.

CHAPTER 4

EGGSHELLS AND KID GLOVES-RACE RELATIONS IN MADISON COUNTY

“Darryl is the biggest son-of-a—bitch I have ever known. He is horrible to deal
with, he cares about nothing and nobody, and he is just out to manipulate the system,”
Jackie exploded into my face. Jackie Hatﬁeld was a coworker of mine at the rehabilitation
center, and she had noticed Darryl Kincaid waiting to see me in outpatient occupational
therapy. Darryl had been an inpatient at our facility a year prior to this encounter, having
become a quadriplegic after stealing a vehicle while on cocaine and then crashing it during
a high:speed chase with police. The community was experiencing a sudden increase in
violent crime, and emotions were running high about this particular incident. Darryl was a
young, street-wise, low income, black man who used raw language and emotional
outbursts in daily discourse. In contrast, Jackie was a middle-aged white woman therapist
from a working class family in the Upper Midwest. It was no coincidence that the rehab
staff considered Darryl one of the most noncompliant patients they had ever seen. In
cases where noncompliance was an issue, signiﬁcant differences existed between those
doing the labeling and those being labeled. These differences included race, class,
education, and geographic origins.

History is a key concept crucial to understanding embodiment, which is the

expression of the past in the present. When the embodiment of history, race, culture, and

45

46

economic class was expressed very differently between most professional staff members
and Darryl, it had a direct effect on his level of care. Two of the technicians (who were
Aﬁican American) had another opinion of Darryl. One labeled him a “jive turkey,” who
was mostly bark and no bite, and who just needed to be reminded in a ﬁrm, motherly
fashion of the priorities. Another tech stated that you just needed to take what Darryl said
“with a grain of salt” and go on about the business of taking care of him. She also said
that Darryl just needed to have some control over a few choices, and he was “much easier
to deal with” when given choices and treated like a human being. The technicians felt that
most of the white professionals were scared of young black men, especially of those with
the life experiences of Darryl. The history of race relations, economics, and culture in the
area has immense effects on interactions between people in this town, and ultimately
shapes and is shaped by embodied history.

Historically, Jackson (with a current population of 65,000) was named for Andrew
Jackson, whose wife was from the area It was developed as a cotton growers’ settlement
aﬁer settlers fought wars and then signed treaties with the Chickasaw and Cherokee
people of the region in the early nineteenth century.1 Many of these settlers (of European
descent) were from the older states, such as North Carolina, and brought with them a few
slaves to begin clearing and planting for the future economic mainstay of cotton farming.
By the mid-18005, the cotton business was lucrative, and the slave market was increasing
in proﬁt as the railroads allowed shipping to Memphis for distribution along the trade

routes and ports of the Mississippi River. By the early 18605, only sixty-one free blacks

 

lThe Chickasaw people were essentially driven south and the Cherokees to the
west by armies and white settlers led by Andrew Jackson.

47

were known to live in Madison County (Williams, 1986; Baker, 1994). The Civil War and
Reconstruction changed everything and nothing. While the slaves had been emancipated,
the power and resources continued to be controlled by the white property owners and
business people, a trend which continues today.

When the slaves were freed and Reconstruction of the South began, white farmers
(many of whom were former Confederate soldiers) were required to pay for housing,
clothing, food, and a portion of the harvested crop as salary for contracted laborers called
“Freedmen,” who were the former slaves. As the economic foundation of the cotton farm
was unpaid slave labor, fewer than half of the former slaves were now employed as share-
croppers. New laws and restrictions were developed by white politicians to control the
black population (Baker, 1994). Bitter feelings developed between the former
Confederate soldiers and the Reconstructionist “Yankee” politicians and leaders; the latter
were essentially appointed throughout the South by barring former Confederates from
voting (Williams, 1986), leading to a long-standing pattern of underground networking

and political maneuvering on the part of former slave owners to control the economics of

the South (Stack, 1974).

The Building of New Barriers

Inequality between the races developed simultaneously with colonial economic
structures in the New World, as slaves became a major commodity for the building of
agricultural industries, especially in the Southeastern United States (Smedley, 1993;
Thomas, 1993). Reproduction of the economic structure of slavery was further reinforced

by the people whose lives and economies depended on this labor, who developed a view

48

of black people as “Other”: separate, unequal, subhuman (Hacker, 1992; Smedley, 1993).
This distancing allowed economic exploitation to continue, and the concept of black as
inferior became endemic in the culture of the burgeoning United States. The formdation
was laid for long-term racial conﬂict,2

The Civil War rhetoric was (and is) signiﬁcant in the South in that it stressed that
the issue was states’ rights, not the enslavement of humans. Historians make valid points
that the Union had many economic interests, and not necessarily humane social concerns,
which led to the war with the Confederacy. The South’s cotton industry was becoming a
dominant economic power in the European market, which worried the Northern
merchants and industrialists. The Northern politicians were also concerned with the
continuing stronghold of Southern politicians (Catton, 1961; Davis, 1982; Nichols, 1961).
The continuing conﬂict over the ﬂying of the Confederate ﬂag above the South Carolina
capital building (among other sites) is used as a staging point for century-old arguments
over pride in an economic and historical tradition versus the ultimate symbol of
enslavement of an entire race of people.

The post-Civil War era was ﬁlled with hope in the African American community,
and many migrated to the Northern United States for work that was difﬁcult to ﬁnd in the
South. Those who stayed behind faced continued poor living conditions, wages lower
than their white comterparts, and racial violence (Edsall and Edsall, 1992; Massey and

Denton, 1993; Stack, 1974; Thomas, 1992; Williams, 1946; DuBois, 1903). Even though

 

2Smedley (1993) offers the most well-supported and in-depth academic study of
the origin of the term race, its meanings, and how the perception of race came to be such a
dominating world view in North America and South Aﬁica.

49

the economic structure of slavery had been made illegal in its formal sense, share-cropping
continued to exploit the labor of poorly educated black people.

Jim Crow laws began to ﬂourish, forcing the separation of blacks and whites in
housing, businesses, and social gathering places. The practice of “redlining” was used to
deny black people loans for housing in certain areas, or to discourage white people ﬁom
buying houses in certain areas (Edsall and Edsall, 1992; Massey and Denton, 1993).
When a neighborhood began to be integrated, it was considered unstable, and white ﬂight
began to occur. Even in the 19905, sm'veys from across the US. have shown that most
white people say that they believe in racial equality in housing, but statistics show that
most white neighborhoods tolerate up to about 20% black occupancy before white ﬂight
begin/s; while blacks prefer a 50-50 ratio. Once an area hits the critical 20%, many whites
are anxious to leave, and many blacks are anxious to further integrate in an area that has
shown an acceptance of a racial mix. Those who ﬂee a neighborhood because of black
integration, or fear of declining property values as many profess, go to areas which are
known to be white. This would seem to indicate that there are mechanisms in place to
keep certain areas white (Massey and Denton, 1993). These mechanisms are complex and
subtle to the outside investigator.

Today, glaring economic disparity continues to exist between Aﬁican Americans
and whites in the South. Foreign nationals, as well as Jackson residents originally ﬁom
other parts of the country, commented to me frequently and shockingly about the
differences between housing and schools for “white areas” compared to “black areas” of
Jackson. The school district in Jackson came under Federal indictment in 1980 to

integrate the schools, and was again in conﬂict in 1996 and 1997 with the discovery by a

50

black school board member of all-black classes at the magnet elementary school. The
reason given by the white principal for this resegregation was that they wanted to avoid
making the few white children uncomfortable (Branum, 1996). Such “consideration” had
never been given Aﬁican American children in traditionally white schools. African
Americans account for 40 percent of Jackson’s population; however, the major hospital
system (the largest employer in Jackson with approximately 5000 employees), in which I
did my ﬁeldwork, employed African Americans in 90% of non-technical, lower paid
positions, and only 3% of administrative positions were ﬁlled by black people. This pattern
of inequality follows those in most urban areas of the United States (Darden, et al, 1987;
Edsall and Edsall, 1992; Hacker, 1992; Hine, 1989; Kotlowitz, 1991; Kozol, 1991;
Massey and Denton, 1993; Thomas, 1992; Wilson, 1987).

Another more personal scenario highlights the role of landlords in facilitating white
ﬂight. My family and I moved into an apartment complex in Jackson in an area which was
10 percent white, 85 percent Aﬁican American, and 5 percent Latino. The complex
housed primarily working class and low income families, but was not classiﬁed as a
Section 8 (federal low income) business. The apartments were approximately 15 years
old, and had originally been considered upscale apartments in a historically white section
of town. The current landlord had owned the complex for several years by report of
community members, and did the least amount of maintenance possible. The ﬂoor of the
back porch was rotting, the plaster ﬁom the ceiling frequently ﬂaked off and fell to the
ﬂoor, and poison ivy grew in trees around the apartments. The landlord, Mr. Smith, was a

succeszul white business man who owned several rental properties. He refused to make

51
some repairs and delayed other repairs for weeks. Several of my neighbors and my family
were without air conditioning in the blistering July heat of Tennessee for several days.

Most of the neighbors in the complex were hard working and ﬁiendly until Mr.
Smith allowed several new renters to move in one week. These renters immediately
caused difﬁculties. The rumor was that Mr. Smith was selling the complex, and was tying
to ﬁll it up so that fewer questions would be asked about why there were so many empty
apartments. Within a span of ten days,1 was awakened by gunﬁre, one of the new
neighbors had stabbed her boyﬁiend, and a car had been stolen. Suddenly, anyone who
had the means was looking for a new place to live. Police ofﬁcers investigating the recent
stabbing informed me that my complex was now on the police force’s ‘Wvorst of the
worst” list for trouble. My family and I moved to an apartment complex which had an
immediate opening and which was known for its security measures. The new complex
required considerable references, and was in the northern, mostly white section of
Jackson. Despite only a $60 difference in monthly rent, none of my other neighbors
moved into this new complex. White ﬂight had occurred through a complicated mix of
economic advantage and a landlord-facilitated crime wave. Those with economic
advantages (including better salaries and better credit) allowing quick mobility into a nicer
neighborhood were more likely to be white.

When African Americans get close to these barriers between all-white areas and
black areas, and are denied housing through realtor discouragement, withholding of loans,
and violence, the black neighborhoods become caged in and are not allowed to expand
except into other black or mostly black areas. Over time, this compresses more black

people into smaller areas with less and less contact with the white community. Even when

52

economic levels are taken into account statistically, the compression of Aﬁican Americans
of all economic levels into contained areas in US. cities is astounding (Massey and
Denton, 1993).

The over representation of African Americans in the lower socioeconomic classes
has been well—documented (Darden, et al, 1987; Edsall and Edsall, 1992; Farley, 1985;
Hine, 1989; Kotlowitz, 1991; Kozol, 1991; Massey and Denton, 1993; Wilson, 1987).
Massey and Denton propose that housing discrimination and hypersegregation3 have been
the major forces creating an Aﬁican American underclass, while Edsall and Edsall outline
the political maneuvers which affected economics throughout the 19th and 20th centuries.
Wilson argues that African Americans make up a distinct class, much like the castes found
in India, limiting economic ﬂexibility and power. Race and economies are nearly
impossible to separate in a region where one race is systematically kept contained and
controlled through constricted opportunity, poor education, and restricted networking.

The concentration of jobs in cities and the lack of workers during WW1 and WWII
drew Aﬁican Americans to ﬁll these Openings, and the new workers and their families
began to compete more seriously with poor and working class whites. When the Jim
Crow laws were overturned through various cases such as Brown v. Board of Education
in 1954, the Civil Rights Act in 1964, the Voting Rights Act in 1965, and the Fair Housing
Act in 1968, the need for housing pushed the blacks into formerly white sections of cities.
Whites fought back with violence and police brutality in the mid-20th century, and these

trends continue today. Aﬁican Americans were effectively prevented from moving into

 

3'Hypersegregation is deﬁned as the compression of more and more members of an
ethnic group into small, deﬁned areas for housing (Massey and Denton, 1993).

53

white areas of the cities, even as new waves of migration of African Americans from the
rural areas continued. The jobs offered to Aﬁican Americans were more menial and
required fewer skills, and management positions were offered only to whites (for
contemporary examples, see Chapter 7). The discrinrination in housing and the violence
against blacks created increasingly concentrated sections of Aﬁican Americans in cities
and towns, close to the manufacturing and service jobs available to them. This housing
demand caused families to take in kin, creating overcrowded and inadequate conditions
(Massey and Denton, 1993).

As African Americans continued to apply for jobs with improved wages and
opportunities in the 19405, resentment in the white community began to build. Whites and
middle class blacks were appalled at the practices and “uncouth” manners of the black
farmers-turned-city dwellers, contrbuting to stereotypes about black people in general,
much to the dismay of established middle class blacks. By the 19505, violence against
blacks frequently erupted along residential borders between white and black
neighborhoods, and ﬁnancial institutions had implemented “redlining,” as noted earlier in
this chapter. Block busting also came into practice by white realtors, who would
purposefully place newly-immigrated, rural blacks into white neighborhoods, then
advertise this fact to the whites who feared the loss of property values. The realtors
would buy the white-owned properties at a “fair price,” then rent to poor Aﬁican
Americans at a high price. Neighborhoods quickly turned over along racial lines,
facilitated by the practice of loan institutions which denied ﬁnancing to more liberal whites

in these “rmstable” neighborhoods, effectively creating and maintaining racial segregation

54
within the cities (Darden, et al, 1987; Edsall and Edsall, 1992; Massey and Denton,
1 993).

The late 19505 and early 19605 brought racial tensions and nonviolent civil
movements into the public eye, and new political alliances began to form around the issue
of race. From the Civil War to the 19305, African Americans had traditionally voted on
the Republican ticket, siding with the “party of Lincoln.” New Deal programs outlined by
Franklin D. Roosevelt in the 19305 facilitated a party change in African American
communities to the Democratic party. Friction began to arise in the Southern Democrats
against the Democratic line of acceptance of blacks into the party affiliation. White
politicians in the South effectively wrestled control of the Republican party from the few
Aﬁican Americans who had come to power in the black communities. As laws such as the
Voting Rights Act in 1965 were enacted, the Supreme Court decisions such as the
Miranda Act and others protecting the rights of criminals increasingly alienated more
conservative white Democrats (Edsall and Edsall, 1992).

Nixon was able to seize the moment in his 1968 election contest against Humphrey
(who embraced the acceptance of minorities and women, along with other disenfranchised
. groups, into the Democratic party) and George Wallace (who had effectively pulled the
conservative and overtly racist Southern Democrats into an Independent party). Nixon
won due to the split Democratic party, and forged ahead toward re-election plans to win
Wallace’s poor Southern whites and Northern working class whites, who were
increasingly unhappy with integration of the schools and the increased taxation in support

of the Vietnam War and New Deal social programs. Nixon succeeded and started the

55

swing in political power to the conservatives, which continued through the early 19905
(Edsall and Edsall, 1992).

Residential segregation along racial lines continued to build throughout this period.
Milestones such as the overturning of the Jim Crow laws and the Fair Housing Act of
1968 had little effect on the discriminatory practices of ﬁnancial institutions, realtors, and
private citizens due to the gutting of the Fair Housing Act as a political deal to pass it
through a bipartisan Congress. The Housing and Urban Development Department (HUD)
was effectively prevented from acting on the Fair Housing Act, and individual citizens
were left to bring suits with no monetary or legal support. Needless to say, little progress
was made in the arena of housing discrimination. When President Reagan attempted to
wlrittle away at the Fair Housing Act, moderate politicians were disgusted with the
continual racial divisiveness in the two party system, and passed bills to strengthen the Act

in 1988. It remains to be seen if this will have a legal effect on fair housing practices

(Massey and Denton, 1993).

Other Aspects of Jackson History

During the much publicized Sanitation Workers’s strike in Memphis and other
conﬂicts around the Mid-South region, Jackson remained largely subdued throughout the
civil tmrest of the 19605. A very strong taboo against public disagreement existed in
Jackson, with the favored public presentation being restraint and congeniality (a trend
which has remained largely rmchanged). The major newspaper in town rarely reported any
news of the black community, despite the fact that nearly 50% of the population was

African American. Events such as the Brown vs. Board of Education decision and the

56

Montgomery, Alabama bus boycott received little attention, with interviews of local
(white) politicians and leaders downplaying any local effects. Sit-ins occurred at the local
ltmch counter at Woolworth’s department store, which did not allow blacks to eat there.
Once the Jim Crow laws were swept aside, Woolwortlr’s closed its lunch counter.
Although Memphis is only an hour away from Jackson, their histories are signiﬁcantly
different. While Memphis citizens were rallying and making headlines, Jackson headlines
continued to report on the Vietnam war. White J acksonians were and still are quick to
denounce Memphis. When I mentioned Memphis to white Jackson residents in 1996-
1999, many of them expressed distaste for the city of Memphis, often relating to me the
crime and “dirtiness” of the city. Black citizens had fewer negative comments about
Memphis. Few citizens with whom I had contact during ﬁeldwork, black or white, ever
spoke of civil rights or the signiﬁcant role Memphis played in the 19605.

In 1970, the all-black Merry High School merged with all-white Central High
School to become Jackson Central Merry High School. The buildings were and are
located across the street from one another, and there is still an appreciable difference in
the quality and state of the buildings (Merry’s building being signiﬁcantly more
dilapidated). One of the more public disagreements to occur in Jackson was the ﬁght
against merging the city and (largely all white) county schools, as well as the forced
integration of Jackson schools in 1980. The latter case was signiﬁcantly supported by the
NAACP.

This chapter has reviewed the historical events in the United States which have
informed the social development of Jackson, Tennessee. Historical information on

Jackson and West Tennessee were included when available. Understanding history, both

57
local and regional, is imperative in interpreting the daily interactions between people in
public and private spaces, especially within the medical setting of a physical rehabilitation
center. The rehabilitation center is ﬁlled with people in crisis as they begin to grasp their
transition: from able-bodied to disabled, from productive worker to unemployed worker,
from dependent spouse to head of household. These crises serve to bring into stark relief
those characteristics that are so personal and important in this region, such as family unity
or lack thereof, independence in self care, a positive self concept, and productivity and

worth.

CHAPTER 5

THE SETTING:
SOCIAL NETWORKS AND THE DIFFICULTY OF GETTING IN

Jackson, a community of approximately 65,000, is experiencing rapid growth W
while. maintaining its small town character. For native J acksonians, a comforting

familiarity still exists in many areas of the town. For newcomers to Jackson, especially

 

for those unfamiliar with the culture of the Southeastern United States, the town is a r
perplexing and ﬁ'ustrating lesson in uncovering unofficial knowledge and nondiscursive
social structures and cultural patterns.

When approaching Jackson on Interstate 40 from Memphis or Nashville, a series
of poorly planned exit ramps (the rural drivers tend to come to a dead stop due to the very
short ramps, causingithe more traffic-experienced Jacksonians to zoom around them or
wait in a line behind them) leads directly onto the two main thoroughfares in Jackson:
Highland Avenue and Highway 45 Bypass. The Bypass was built to lessen the trafﬁc on
Highland, but has become a tourist and fast-food strip, complete with 20 restaurants and a
musetun devoted to Jackson native Casey Jones (a famous railroad engineer involved in a
major train collision around the turn of the century), all within a single square mile. The
north end of town is where the major portion of new residential and business projects are
booming, and is largely populated by whites. Driving south towards the center of town
(takes ten minutes ﬁom the Interstate), well-kept older neighborhoods emerge, alternating
with run-down older homes rented out to lower income families. Going past downtown,

58

59

driving south on Highland, the former town of Bemis (now a part of Jackson) is still
apparent in the old cotton mill structures and shopping centers still bearing the name of
Bemis. Bemis was created in the late 18005 by the Bemis Cotton Mill owner operators,
who built schools, stores, and housing for former farmers looking for work.

The eastern section of town is considered the center of the black community in
Jackson. East Jackson, as it is referred, suffers from lack of close grocery stores and
shopping, and neglectful landlords. Industrial parks have made eastern Jackson a mecca
of manufacturing, with a large Proctor and Gamble site responsible for Pringles potato
chips, Van De Kamp’s frozen foods, Pillsbury, Delta Faucets, plastics and metal
industries, and sewing factories. A recently added minor league baseball park, Pringles
Park, has brought new life to the eastern edge of Jackson.

. Little variation exists in the religious life of Jackson, with the Baptist
denomination being the most prominent sect. A synagogue exists, but does not advertise
its presence, located in a quiet residential neighborhood with nothing but a faint Star of
David stain glass window to declare its nature. There is also one Catholic Church in the
community, located on one of the main thoroughfares. There are no Buddhist, Muslim,
or Bah’ai temples or gathering places. While economic stratiﬁcation does exist in the
black and white communities, most prominent positions are held by white males.
Working class people are steadily employed at the numerous factories. Several small
colleges are present in the area, all with religious afﬁliations.

Political wrangling is still the norm in many towns and cities, and Jackson is no
exception, even in daily encounters in the community. Jackson is particularly steeped in

elusive social networks and unwritten nrles. My assessment of Jackson is that of a

60

stubbornly provincial town which does not appreciate new ideas or transplants that
introduce the ideas. When newcomers settled in Jackson in 1995 and 1996, road maps of
the town were difﬁth to locate and outdated, causing problems in ﬁnding businesses.‘
Many businesses were not listed in the reference section of the telephone book, especially
those owned and operated by Aﬁican Americans, or those located in the traditionally
black sections of town.

One example of the strength of the network was my search for ﬁrewood in
Jackson. As the winter of 1996-97 approached, I began to look for ﬁrewood suppliers to
reduce the winter heating bill in our draﬁy apartment. Only three were listed in the
newspaper classiﬁed ads, and only two of them would deliver. I called one of the
contacts and made an appointment for delivery, but the wood dealer never showed. I
repeated the process with another ad. This proprietor also did not show. I began to ‘
wonder if my address in a mostly black neighborhood was affecting my ability to receive
services. Finally when I mentioned my plight in front of one of the patients at work (who
happened to be African American), she offered to give me the name and number of a
family member who often cut and delivered ﬁrewood. Within the week, I had plenty of
ﬁrewood at a reasonable price. This networking through people I knew at work and in
the community became the only reliable way to receive services or ﬁnd out where some

item could be purchased, providing you used the name of the person making the referral

for you.

 

‘Although newcomers to this area are still a minority, the city is growing rapidly and
may soon outgrow its former small town ﬂavor.

61

When I arrived in Jackson, the separation of the black and white communities in
Jackson was immediately apparent and quite solid, though many in the community would
have denied (and did deny) this fact. As with many communities nationwide, churches
were nearly completely segregated, and residential areas were usually quite separate in
most areas of the city. One nearly all-black section was commonly referred to as “East
Jackson,” even though it was not a separately incorporated community from Jackson, nor
was it listed on any map or in any reference book. The purpose of calling this area “East
Jackson” seemed to be to let the listener know that the speaker was talking about a black,
generally low-income neighborhood. During the ﬁrst (very hot) summer in which I lived
in the area, I was inquiring about ﬁnding a public pool in which I could cool off and take
my one-year-old to play. When I mentioned a certain community center to a white patient
with whom I worked, he looked around the room and whispered to me that that was a
“black place.” He seemed pleased that he had been able to offer this bit of advice to a
newcomer, implicitly warning me away from what was perceived to be the certain doom
of entering a place separate from my proper societal path. These descriptions are typical
of many communities in the United States, especially in the rural south; however many
white Americans continue to deny the overt and covert indications of two separate and
unequal races in this nation.

The separateness of the races (particularly of whites and African Americans) is a
continual struggle for the local school system. In 1975, a federal judge ordered the three

elementary schools to be clustered2 to integrate these schools. As students reached the

 

2”Clustering” is the practice of pooling all students from particular schools, then
redistributing them with roughly equal numbers of minorities in each school. In this case,

62

age to move to the 5m and 6tb grade school, which was formerly all-black and was still
located in East Jackson, the rate of withdrawal of white students to private schools
suddenly and rapidly increased (The Jackson Sun, 1988). In 1990, the school system was
ordered by a federal judge prompted by the local NAACP to negotiate the terms of a
merger with the largely white county schools to ensure integration as the clustering
system came to the end of its mandatory tenure (The Jackson Sun, 1990). Numerous
private schools still exist and are largely white in composition.

Even today, if not for school integration, young black and white children might
not come in contact with each other in the context of play and casual social interactions.
The preschool-aged black children in the neighborhood in which we lived had obviously
never had much contact with white children, as many would stare at my preschooler and
pet his blonde hair upon ﬁrst meeting him. The children of school age did not behave in
this manner, leading me to believe that white kids were nothing new to them.3 Certain
grocery stores tended to serve one community or the other, depending on location. Bars
were often frequented by either blacks or whites, and some were known risks for Aﬁican
Americans.

Religion, speciﬁcally Christianity, was often used as a description which paved

the way for interracial connections. For example, when I went to greet a new neighbor

 

one school was used for K-2, one for grades 3 and 4, and one for 5 and 6.

3Despite the casual interaction provided in integrated schools, it should be noted that
black and white children do not randomly mix in structured or unstructured school
activities at the middle school and high school level. Informants who have spent
considerable time in the public and private schools note that in the lunch rooms,
auditoriurns, gymnasiurns, and hallways, the two races generally keep to themselves.

63
who was a middle-aged African American man,- he said, “No, I’m not moving in here, I’m
just helping the family. They are good Christian folks, though, good Christian folks.
They’re good folks.” He snriled and nodded his head a lot, and seemed over-eager to
make a positive impression. Advertisements depicting child care providers in The
Jacksgnﬁm newspaper4 often included the phrase “Christian woman will provide child
care for your child . . .” When checking for child care in the area, I discovered that this
phrase was used for either white or African Americans, but the few Aﬁican Americans
who did advertise as providers almost always used this phrase. White child care
providers used the phrase less often.

My interpretation of these and other interactions led me to believe that in this
religiously conservative community with a church on nearly every major street comer
(and on many minor ones), advertising oneself as “Christian” was an instant way of
communicating that this person was more acceptable than those who would not profess
this advantage. It was sometimes a way of making black people more acceptable to the
white community. The African Americans with whom I came in contact who had need
for child care services more oﬁen relied on relatives, friends, and neighbors, and did not
rely on the local papers or Yellow Pages to ﬁnd child care. Therefore, I interpreted
advertisements in Ihglacksonﬁrm by black proprietors to be a primary tool for

communicating with the white community. W, a newspaper which targets

 

W is the major local paper, and is owned by Gannett News Service. It
employs a multiracial staff, and has done so since the early 19805. It has a largely white
readership. Reporting of African American events and news has signiﬁcantly increased
since the Civil Rights era, however there remain complaints that it still does not represent
African Americans as well as it should.

64
the African American commrmity in Jackson, was begun in 1989 and is a signiﬁcant
source of advertisement to the black community.

Jackson experienced substantial growth in manufacturing and the service industry,
driving the population up quickly in 1995-1997. The Chamber of Commerce was key in
selling Jackson as the home of a stable, reliable work force to incoming businesses (labor
is cheap and tends to be union-free). Recently, particular efforts have been made to
attract minority owned businesses (Bennett, 1997). The downtown area contained many
old and abandoned buildings but has recently experienced a renewed effort to rebuild the
county courthouse and other businesses. Many businesses had relocated from the
predominantly Aﬁican American downtown area to the prosperous (and largely white)
northern section of town, where new housing was scarcely meeting the demands. Now,
efforts are being made to halt the ﬂow of urban ﬂight.

Although the white community is largely unaware of them, a few major historical
beginnings or accomplishments of African Americans has occurred in Jackson: The
Christian Methodist Episcopal, or CME church (formerly known as Colored Methodist
Episcopal) was founded in Jackson, Tennessee, in 1867. Lane College was created as the
church afﬁliated school with Bishop Isaac Lane as its president, and the parents of Alex
Haley were educated there. Shirlene Mercer, an African American anti—crime activist in
Jackson, was the ﬁrst person in the United States to institute community anti-crime
marches, which has become a nationwide activity. Jackson is also known for home-
grown musical talents such as Carl Perkins (wrote “Blue Suede Shoes” which catapulted
Elvis Presley into the limelight), the ground breaking blues harmonica player, Sonny Boy

Williamson, the blues singer Mabel “Big Maybelle” Louise Snrith, and blues band leader

65

Big Joe Turner. Carl Perkins was a white rock and roll singer/songwriter from Jackson,
and was known for popularizing black blues music and presenting “Rockabilly” music to
an otherwise unaccepting white community (Meyer, 1998). Dr. Miles Lynk was the ﬁrst
black physician in Jackson, and published the ﬁrst Aﬁican American journal of medicine
in the United States: The Medical and Surgical Observer.

Civil War societies are common in the Jackson area, such as the re-enactment
organizations which sponsor performances every year at nearby Parkers Crossroads. The
United Daughters of the Confederacy also has an active chapter, although membership is
gradually decreasing due to lack of interest in the current younger generations.
Considerable letter writing has occrured in the local newspaper regarding the use or
reverance of the confederate ﬂag, with most letters favoring the continued displaying of
the ﬂag. Most area high schools have voted to ban the Confederate ﬂag from school
property to avoid racial tension, a decision which seems to have settled well with the
community.

The education level of many J acksonians and the surrounding region remains low;
the state is ranked 49‘h in literacy in the United States, and Madison County has 6,679
adults over twenty-ﬁve (out of 48,976) who have less than nine years of education.
Fifteen percent of all adults in the state are illiterate, and 39% are at remedial levels in
educational measures (Literacy Foundation of Memphis, 1992). Many of the Jackson
youth attending college are the ﬁrst in the family to do so, and they struggle with the
adjustment to the college setting with no family role models. The median household
income, $22,434, does not accurately illuminate the gaping chasm between classes and

races. The value of the average white housing unit is $66,242, while the value of the

66

average black housing unit is $36,967 (Center for Business and Economic Research,

1991).

Points of Conﬂuence

The black and white communities have made changes which are proving
beneﬁcial in the context of race relations. Since the outbreak of church burnings in 1996
and 1997 (a majority of which were within a four hundred mile radius of Jackson),
churches across the community have increased communication and activities across racial
boundaries. A new interdenominational and multiracial community choir now exists,
with community acclaim at recent concerts. Traditionally Aﬁican American and white
colleges have joined in activities and choral performances. Diversity Lunches are
sponsored by the city mayor, and take place on a monthly basis. These lunches have
allowed prominent African American and white business leaders to get acquainted and
discuss matters of importance. Signiﬁcant Aﬁican American holidays and events, such
as Martin Luther King, Jr.’s Birthday, and Kwanza, are celebrated with positive media
attention. The Chamber of Commerce has identiﬁed minority businesses as the target of
growth in this area. These beginnings are hopeful signs in a community which has

historically been divided.

The Hospital

The separateness of the black and white communities in Jackson is apparent in the
physical rehabilitation ward at the larger of two hospitals in Jackson. The hospital system

is the largest employer in Jackson and in Madison County, employing 5000 people in its

67

entire system, and occupies a ten-acre campus as well as several off-campus clinics and
hospitals. The vast majority of the professional staff members in the rehabilitation ward
are middle class, white (with many from other regions of the country and abroad), female,
and between the ages of twenty-two and thirty-ﬁve, whereas most of the nonprofessional
staff are of the working class or working poor category, Aﬁican American, female, and
between the ages of thirty and ﬁfty-ﬁve.

Ninety percent of the patients in the ward were white in 1996-97, and ten percent
were African Americans, most of the latter being above the age of sixty. Most of the
patients were considerably lower in educational and economic levels than the professional

staff.

Getting In

I had been an occupational therapist for 10 years in 1996. I had worked in ﬁve
major hospital systems in a variety of health care settings, providing me with background
and depth of knowledge of health systems and policies. This knowledge and familiarity
with hospitals and clinics had been essential in gaining easy access to hospital patients in
past research or clinical evaluation experiences. I also had interviewed or worked with
over 2,000 patients in my career as an occupational therapist. Occupational therapists
were in short supply nationwide (especially in the rural South), and I assumed that I
would be able to easily ﬁnd part-time work as an OT while I completed the ﬁeldwork
phase of my research.

To my surprise, “getting in,” that is, becoming accepted in my role as researcher

in the rehabilitation unit, was time-consuming and frustrating. Hortense Powdermaker

68
(1939), captured the essence of the introductory phase of ﬁeldwork in any setting, stating
that “it is essential that the ﬁeld worker should in the beginning have some easily '
understandable and acceptable role, other than that of professional observer.” Having
been an occupational therapist for ten years, I assumed that I would have less difﬁculty
gaining access to research subjects, especially when a few professional connections could
be established. When my husband gained a position at a small college in Jackson as a
music professor, I began my search for facilities where I could gather data in Memphis,5
starting with an introduction by a local medical anthropologist. This professor warned
me that the environment was very closed in this city, especially if the subject involved
race matters. I felt, however, that I might be perceived as an “insider” since I was a
health care professional, and that this would allow a much improved ease of movement
into and within a hospital or clinic. Despite a few signiﬁcant contacts established in area
hospitals and universities, most phone calls went unheeded for months. Life was
complicated by my struggle to ﬁnd part-time work in order to continue my research, and
to locate appropriate child care for our nine-month-old infant who seemed to be on the
road to chronic ear infections. At the point of having to sell possessions to buy groceries
and antibiotics for our son (my husband often travelled as a musician, therefore single-
Darenting became a role at least three months out of the year), I came to the conclusion

tl‘nat ideological stances regarding separating work from research were a luxury I could no

\

’Although I lived in Jackson, I did not want to pursue research in the same facility in
which I was a paid employee because of difﬁculties encountered in past ethnographic
rescarch. Inevitably, the researcher is frequently placed in an awkward position of
choosing between loyalty to the research project versus loyalty to a highly competitive
health care system, complicated by inquisitive coworkers who want to know why you

chose to speak to whom.

69
longer afford. I plunged wholeheartedly into the search for work which would also
provide a population of informants.

Occupational therapists are in great demand in most regions, and I expected to
ﬁnd several openings with the hours of my choice. Once again, my conﬁdence (some
might say overconﬁdence) was eroded when facilities promised home health caseloads
that never materialized. Facility managers with whom I spoke seemed curious as to why I
wanted only part-time work, and how I came to be in Jackson. As many have
experienced in the South, timeliness is not valued, but socially established connections
are of the utmost importance. Native Jacksonians took note if one had to ask for
directions to get to a business,‘ and immediately commented on differences in accents. I
began to use a more native accent and refrained from giving clues which might suggest
that I was ﬁ'om elsewhere. This resulted in quicker acceptance and less curiosity about
why I had moved to the area, presumably because I was not initially detected as a
stranger. Initial social conversation about local events or people was the normative way
of establishing a base for doing business, at which time I could mention that I had a
young child. I found it easier to gain acceptance in this “buckle of the Bible Belt” to let
others assume I wanted to be home with my child part of the time, but needed part time

work. It is no coincidence that I ﬁnally found work through a New Jersey native who was

accustomed to hiring from outside the area.

°Direction5 often included references to landmarks which may or may not still exist,
i -e. “Turn right where the old mill used to be. . .”

70
Once I} ﬁnally gained part time employment, I began getting to know the medical
director7 of the rehabilitation unit in which I was employed. I told him of my dissertation
research, and he was very pleased to have someone doing research within his facility.
With a letter of support from him and the administrative director, I began the process of
research approval within the hospital system. Once again, I was treated as a suspicious
stranger when I contacted the Chief of Staff’s office, and tried to obtain information on

the process of research approval:

CA: “I am an occupational therapist on the rehabilitation unit, and I am
calling to get information about doing my dissertation research within the
hospital. 15 there a board which oversees this activity?”

Secretary: “You have to get approval to do that kind of thing here. You
can’t just do research without permission.”

CA: “Yes, I know. That is why I am calling. I have a recommendation
from Dr. C and from Mr. R to begin this process. Can you tell me how I
can begin?”

Secretary: “Does Dr. K [chief of staff] know about your research?”

CA: “No, I haven’t yet spoken with him. Is he the person with whom I
should make an appointment, or do you have an application I need to ﬁll
out?”

Secretary: “1 don’t know about those things. There is a review board
which meets every quarter. You need to go through them. John Jacobs is
in charge of that.”

CA: “Can you tell me where to contact him?”

Secretary: Pause. “He is the Director of the Cancer Center.” (This last
statement had a note of amazement at my ignorance).

7The medical director was a native Grenadian of Aﬁican ancestry. This may have
been a signiﬁcant factor in gaining approval and support from him for research.

71

When I contacted this person’s secretary, I was given verbal information on what had to
be submitted. I gathered the appropriate materials and immediately sent them to the
office. After a few weeks, I called back to check on the progress of my approval. I
ﬁnally spoke to the actual chair of the Institutional Review Board, and he stated that I
needed to ﬁll out the application before I could be considered for approval! Trying to
keep my frustration from boiling over at a goose chase that had taken several months
now, I asked for a copy of the application. I obtained all the necessary materials, and sent
them to him. I called to check on the progress, and no return calls were given. Dr. C, the
medical director of the rehab unit, continued to ask me how my research was going, and I
told him about my frustrations. He made a phone call that day, and the chair of the
Review Board called me and apologized for having lost my packet on his desk. He said
there should be no problem with my project, and that I could commence with
interviewing subjects. A written consent soon followed. After trying for nine months to
get research approved, it suddenly came through with a strategic phone call from a doctor
and at the seeming whim of the Review Board Chair. No questions were ever asked of
me regarding my research from the review board, except to give an annual update on how
many subjects I had involved in my study.

This type of process was repeated in many social arenas until I began to slip into
the social dance required especially when frequenting white-owned and managed
businesses:

CA: “Hi, how are you?”

Proprietor: “Just ﬁne. And how about yourself?”

72

CA: “Just ﬁne. I was just talking to my ﬁiend, Mr. Butchy at ABC

business, and he told me that you all do the best work on carburetors in

town. Have you got any openings today to take a look at my car. ”

Proprietor: “I believe we do. What seems to be the problem? . . .”

Conversation would often turn to community events or weather, and would end with a
congenial goodbye. I was careﬁll not to ask for a time line, as this would have pointed
me out as untrusting of the mechanic’s ability to ﬁnish as best he could. “There’s no
cause for people to get ugly” was a frequent comment encountered regarding anyone
displaying assertiveness or (heaven forbid) aggressiveness in business encounters.
Dropping names and giving complements were near essentials in initial contacts. Having
little knowledge of or not using this social banter provided enough of a barrier to keep
unwanted people out of any given business or network. Those individuals who had not
come into contact with the accepted business community may not have learned the social
codes necessary to successfully negotiate daily interactions.

Although this lack of “customer comes ﬁrst” mentality seems unusual in the midst
of a materialistic culture, it is a subject that is commonly discussed among residents new
to the Mid-South. The local newspaper editor commented on the problem of being
unwelcome as a newcomer to Jackson, and solicited stories from new arrivals to monitor
this ongoing challenge in the community. My perception is that the customer does not
come ﬁrst in this community, unless they are richer in social network, local family
history, and/or monetary funds than the proprietor of the business. Positive social

relations (or at least the appearance of positive regard) are more important in the culture

of the South than other aspects such as economic gain, school, or employment.

73
Initially, I was employed as a staff occupational therapist working primarily with
outpatients, and would be a substitute therapist as needed for inpatients. After 5 months,
I accepted the newly vacated position as Acting Supervisor of inpatient occupational
therapy, a department with 13 employees. I was considered to have a good working

relationship with all departments, as well as having the most experience of any of the

occupational therapists.

The Rehabilitation Unit

As I walked down the hall one day toward the physical therapy gym, I was met by
cacophonous sounds of therapists speaking encouragingly, loudly, and ﬁrmly to patients
to “stretch it out a little farther,” “just two more steps,” and “come on, you can do it.”
What that must sound like to someone who has never been near a physical rehabilitation
unit, much less a hospital! Many patients, especially elderly ones, expressed fear of
therapy, assuming that painful torture was a part of the routine. One elderly woman
refused to go to the therapy gym on her ﬁrst day because “those Amazon women will hurt
me.” Sensory overstirnulation is a signiﬁcant factor for both patients and staff. The
occupational therapy gym was especially cramped, and staff members often spent several
minutes per thirty minute treatment session rearranging patients, staff, visitors, and
furniture in order to ﬁt everyone in (try ﬁtting 9 patients in wheelchairs, 5 staff members,
a mat and 3 tables, 6 large cabinets, and 7 desks against the wall into a room which is
roughly 15 ft. x 40 ft.). We were continually promised a new space “sometime next

year,” but I had my doubts as to whether it would be adequate considering the general

74

clamor for space in the hospital building. See Figure 1 for a general lay-out of the
rehabilitation unit.

The patients were selected for the rehabilitation unit by the physiatrists, who were
consulted in cases where rehabilitation is being considered due to the patient’s lack of
ability to care for him or herself, or due to the lack of a better placement.8 Selection
involves deciding whether the patient has the potential to beneﬁt from rehabilitation (they
must have the potential to improve their mobility or self care status, or their families must
have the potential to learn to provide the appropriate level of care for the patient), or
whether the patient is able to tolerate at least 3 hours of therapy per day. The physiatrist,
admission nurses, and/or discharge planners talk with the patient and family, advising the
patient of the recommendation for admission to the rehabilitation unit, and explain the
purpose of rehabilitation. Patients and families are often in a state of shock at what has
happened to the patient, and frequently do not remember or comprehend the detailed
explanation. When written materials are given, the patient and family are much more
likely to come prepared for the rehabilitation experience.

Admission packets include information on what clothing to bring (clothing with
allows comfortable and free movement, and which are familiar to patient and relatively
easy to put on-no pajamas during the day, as the goal is to get the patient back to a
productive and normal role rather than the sick role), what therapies are available, and
what other staff members may be available for assistance (social workers, psychologist,

patient advocate). A consent for treatment is obtained from the patient (or from the

 

8The patient may be within the hospital itself on another ﬂoor, or in another hospital or
long term care facility.

75

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

South
OT Gym Nurse
Stairs Pt. Rooms Station

Elevators
OT Patient Rooms
Kitchen

Physician ﬁzz}!

Ofﬁces 0 fﬁc cps y

Social

Work

Ofﬁces

PT Gym

 

 

Patient Rooms and
North Nurse Station
4

 

 

 

 

Figure 1. Rehabilitation Unit Layout (diagram not drawn to scale).

76
family if the patient’s competence has been affected). Once the proper insurance
precertiﬁcation has been obtained, the patient is then transported with all belongings to
the rehabilitation ﬂoor. A nursing and physician assessment are performed ﬁrst, and a
wheelchair is selected for the patient to use. The therapy assessments commence within
the ﬁrst 24 hours. These assessments include evaluations of bed mobility, self care,
strength, coordination, visual perception, language abilities (presence or absence of
aphasia or dysarthria), cognition, ambulation or wheelchair mobility, transfers, family and
social history, and premorbid status of the patient.

The organization of the staff in the 50-bed rehabilitation unit within the 750-bed
hospital was typical of rehabilitation units around the US. (see Figure 2). The hospital
was jointly owned by the city and county, and was a not-for-proﬁt, public system. One
point of interest is that the staff members at the bottom of the pyramid, having the least
amount of prestige and power, are the ones who spend all of their work day in direct
patient contact.

From another perspective, dealing with seriously ill or injured people is a highly
stressful job. Escaping this stress is a ﬁequentneed of staff members, and some may ﬁnd
solace in moving into supervisory roles, allowing the health care worker to stay within the
context of “helping pe0ple” without burning out on patient care. As I noted one day in
my ﬁeld notes,

November 21, 1996: I attended a “Guest Excellence Revisited” lecture by

a motivational speaker who works for the Disney Corporation. He had a

well-polished presentation about being “people who care for people”

which was not superﬁcial like so many of these presentations. What I kept

coming back to was that this was the way that the institution tries to

continue to motivate employees that are more and more stressed. The
speaker talked about caring for our patients as if they were our invited

77

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Executive Dtr Medical M D
of Rehab. "m Director ‘—1‘ ' '5
(M.D.)
Admissions Manager Manager Manager Director of
and Public of OT of PT of ST Nursing
Relations
Asst Dtr
of
Nursing
Social Nurse OTRs PTs STs
Work Admit
Specialist
RNs
COTAs PTAs
I l LPNs
OT PT I
Techs Techs
ng
Techs

 

 

 

 

 

 

 

 

 

Figure 2. Rehabilitation Department Organizational Chart

78

guests, and about not complaining about the place in which we work while
in ear range of guests. Perhaps I am a jaded old therapist, but I wondered
how he (and our administrators) thought we got to the place we are now-
tired, complaining, and stressed. We have no private spaces in which to
legitimately air grievances or difficulties throughout the day, we have
more and more patients, and less time to do everything, and we feel badly
when we can’t offer the services to our patients and their families that we
know they need. Paying an excellent motivational speaker thousands of
dollars to speak to all of us hits just the tip of the iceberg. Why can’t they
see that if peOple enjoy their work and feel like they are doing a good job,
that half of these issues disappear?! With appropriate workloads and the
occasional discussion about how we are dealing with the grief all around
us, we don’t begrudge 5 or 10 minutes per day of helping people out, and
we are even able to get to the extras that really make a difference to
patients and their families.

This pattern may inform the discussion on why so many misunderstandings take place
within the context of the hospital environment, and why more and more patients and
family members complain of a less personal environment.

The prestige and power surrounding the medical ﬁeld became clear with an
excerpt ﬁ'om my ﬁeldnotes regarding one informant. He was discussing why he preferred
not to hire people with a medical background as his own personal care attendants:

I also spoke to a new volunteer who is a C,9 quadriplegic [paralyzed from
the neck down]. He talked freely about his accident 11 years ago when he
was in the Army Special Forces, completing anti-terrorist training. He was
rappelling down a building, and was to throw a grenade into a window,
when the grenade bounced off of something and blew apart his support
ropes, causing him to fall 3 stories. His femur was severely ﬁactured, and
it severed his femoral artery. He was medi-vaced out, and required nine
pints of blood before surgery was even considered. I personally can’t
believe he lived. Anyway, he is a very talkative fellow, to the point of my
not being able to get a word in edge-wise. I ﬁnally did get to explaining

 

9A person with this level of spinal cord injury may have the ability to shrug his or her
shoulders, but is otherwise paralyzed ﬁom the neck down. This particular informant used
a joystick near his chin to control his electric wheelchair, and he was able to breath
without the use of a respirator. He lived with his parents, and hired personal attendants to

help with his daily care.

79

my research, and he had some very interesting comments. “I prefer not to

hire personal care attendants with health care experience, because they

have a ‘know-it-all’ attitude. They often have trouble letting me be the

boss, and attempt to change my routines even when I protest it! I guess

they think with their experience, that they know better what I need than I

do. People in the health care ﬁeld are ‘corrupted’ by being hardened and

burnt out, as well as dominating. I don’t have the ability to reach over and

grab them and make them stop. The only power I have is over who I hire.

So I hire people with no hospital or nursing home experience, and train

them up myself.”

The perception by medical staff members that they know best for any and all patients was
a common theme when speaking with staff members on a daily basis. The implied
“naturalness” of the staff authority and knowledge over the patient is an indicator of
ideology (Taussig, 1980). The unconscious ideology of the staff implied the assumed
“rightness” of compliance and “wrongness” of noncompliance.

The administrative organization of the rehabilitation center included an Executive
Director who reported to one of nine hospital vice-presidents, who, in turn, reported to
the executive vice-president, who reported to the chief executive ofﬁcer. The structure
and adrrrinistrative functioning of the rehabilitation unit was as follows: all standard
nursing functions were part of the “routine” orders, which were automatically performed
upon admission (including vital signs, assisting with self care, dispensing of
medications). Functions which were not standard, such as placing of restraints, or
arranging for special dietary constraints, required a physician’s order. Physical and
occupational therapy were automatically ordered for all rehabilitation patients, and speech
and recreational therapy were added as needed by order of the admitting physiatrist.

Contact between the therapists and physicians consisted of weekly team meetings and

chance meetings in the halls. Other than these direct contacts, the therapists generally had

80

the independence to create and follow the treatment plan within the standards of practice
for each ﬁeld. Each therapist typically spent approximately 75% of his or her day with 4
to 10 patients which had been assigned to this “primary” therapist, but the use of
substitute therapists, assistants, or technicians, was common as meetings had to be
attended or progress notes written.

Documentation for therapists consisted of weekly SOAP notes (divided into
subjective data, objective data, assessment of the patient’s condition, and treatment plan)
on each patient (see Appendix C for an example), as well as brief daily notes describing
the activities completed and patient’s response. The therapists may also be required to
write additional progress updates on particular days for the purpose of the insurance
company. Team conference notes and FIM (ﬁrnctional independence measures) forms are
also completed by therapists and nurses on a weekly basis on each patient. The physician
ultimately decides on the length of stay in the rehabilitation unit, but the therapist has the
ability to discharge the patient from a speciﬁc therapy. Due to the Medicare rule that
patients must have at least three hours of therapy per day in order to justify an inpatient
admission in a rehabilitation unit, this discharge from a speciﬁc therapy happens only on
rare occasions. If a patient is discharged from a particular therapy, the other therapies
have difﬁculty making up for the time lost from the discharged therapy. In most cases,
the therapies compromise with each other, stretching a little on the goals so as to continue
to prove the “necessity” of each therapy, allowing time for the more necessary therapy
service to accomplish the patient goals within the estimated length of stay.

The typical daily schedule of a patient in the rehabilitation unit began with being

awakened by nursing aides (called “technicians”) at 6:00 am. for toileting, being

81

weighed, and beginning to get dressed. Showers, which were given every other day, were
saved for the evening shift of nurses, as mornings were considered too busy with meals,
toileting, therapies, and the dispensing of medications. Some patients would be
scheduled to work with an occupational therapist by 6:30 for dressing training, others
began breakfast. For patients in physical rehabilitation, self care activities (such as
bathing, dressing, personal hygiene, and toileting) often lasted for 2 hours, due to the
increased difﬁculty and length of time required to move paralyzed limbs, transfer ﬁ'om
bed to wheelchair, use a nomdominant arm for eating and brushing teeth due to paralysis
of the dominant arm, or to get dressed while lying in bed due to the inability to stand.
Patients then went to the dining room to eat breakfast with the other patients, with the
assistance of nursing technicians. For those identiﬁed as having difﬁculty feeding
themselves, an occupational therapist or assistant and a speech pathologist would have
these patients grouped at a “feeding group” table.

Therapies would resume in the PT or OT gym or speech pathologists’ offices by
8:00 am. Most patients attended an hour of occupational therapy (if they had not already
worked with one in the early am. for dressing), then a half hour of physical therapy, and a
half hour of speech therapy by lunch time. Lunch was served in the dining room again,
usually at 12:00, then therapies resumed at 1:00 pm. Most patients were encouraged to
stay in their wheelchairs all day if possible, as getting in and out of bed was time
consuming for the staff. The patients who were more vocal and assertive about resting
received more attention to creating a schedule which allowed for an extended rest period.
An hour of physical therapy, perhaps a half how: more of OT and ST, and sometimes a

therapeutic recreation activity follOwed in the afternoon, completed by the 5:30 supper

82-
hour. Showers were begun immediately after supper. Many patients were exhausted by
this time of day, and were desperate to get into bed. Patients often complained of
exhaustion, which is no surprise if one considers the effects of severe illnesses, surgeries,
and bed rest on endurance level. A majority of the patients were over sixty years of age
and in poor health before their hospitalization, which contributed to the exhaustion factor.
Light sleepers also had problems being able to sleep in a busy hospital, which may

explain why many patients were encouraged to take sleeping medications.

Discussion

When comparing experiences with other graduate students and other
anthropologists, I had assumed that my experience as a health professional would lend
itself to ease of movement within another hospital bureaucracy. The difﬁculties I
experienced resulted from many factors. The hospitals in which I had completed research
in the past were teaching hospitals associated with major universities. The Jackson
hospital was unaccustomed to research projects, and I suspect the Institutional Review
Board had never dealt with research initiated by a non-physician, or with research with a
. social science emphasis.

Another factor which is of considerable importance in the South is the “Yankee”
factor. While I was born and raised mostly south of the Mason-Dixon line (the Ozarks of
southwest Missouri), I was not from a “Southern” state, and my Ozarkian accent was
somewhat different than the Southern draw] of Tennessee (undetectable distinctions for
those who have never lived in or near the South). Being labelled a “Yankee” was a

deﬁnite negative in Jackson social etiquette, for it was a symbol of the invasion of an

83

unwanted population. In Jackson, and in the South in general, public criticizm of anyone
or anything is taboo and lacking in gentility, even if a person is asked to give an opinion.
Anyone who publically criticized Jackson or its residents, or its history, was subject to
being labelled as a “Yankee,” and identiﬁed as someone to distrust.

As I became more guarded in my responses and maintained a positive and friendly
demeanor (hence the term “Southern hospitality”), I encountered less opposition. Having
to seek information or respond to queries in a socially-necessary indirect manner,
however, often added considerable time and effort to my data collection.

My young age (31 years old upon moving to Jackson) and my gender may also
have contributed to challenges in being considered as a serious researcher by the mostly
middle-aged, socially-correct white men in administrative positions. In some
communities, higher education degrees are an advantage in social situations. In Jackson,
I was regarded as an oddity, if not an over-educated Yankee woman with bad intentions,
bringing up subject matters that were “over and done with in the 19605” or too painful or
critical to discuss with anyone, much less an outsider.

Last, I was an anthropologist studying “us,” which was met with suspicion by staff
and patients alike. Most informants’ idea of an anthropologist was of someone who
studied old bones or contemporary and exotic “others,” not as social scientists seeking to
make sense of medical and social matters within our own society. The discomfort and
initial suspicion expressed by some informants reﬂected an informed public who knew
the power of information and interpretation, and who did not wish to be under the
microscope. I also experienced this discomfort, especially in light of the social taboo

against public criticizm, and became anxious that a local newspaper would somehow ﬁnd

 

84

this dissertation and use bits and pieces out of context to the detriment of myself and the
community.

Due to the assistance of some key people (the Medical Director of Rehabilitation
Services who was a native of Grenada, the Supervisor of Occupational Therapy who was
a native of New, Jersey, and an administrator who was a native of Connecticut), I was able

to ﬁnally access the patient population and successfully collect data.

Chapter 6

THEORY ON THE GROUND IN JACKSON

Anthropological Theory: Praxis Explored in Jackson

When applied to a small town in the Southeastern United States, the construction
of knowledge can be exempliﬁed by the concept of race. Most citizens of Jackson view
race as a biological category which is solid and unchanging, and which has a variety of
related traits encompassing the physical, moral, emotional, intellectual, and spiritual
realms. Anthropologists have revealed that race is a social category, not a biological one.
The use of anthropometrics and morphology, which was a common way to categorize
races in the recent past, produces no distinct populations which are coherent, measurable,
and hereditary in nature (Barrett, 1984; Burgess, 1978; Livingstone, 1964; Sauer, 1992;
Smedley, 1993). Despite visible differences among “races” in the US, the genetic
patterns are not correlated with skin color and other aspects of appearance that are taken
as emblematic of race. In other words, there are as many differences within races as there
are among races, making “race” non-ftmctional as a morphological or biological category.
Race is a social category, not a biological one; therefore, it is socially constructed.
Anthropologists are more likely now to use the term “ethnicity,” referring to a
categorization which encompasses shared language, institutional forms, material culture,

and cultural products (Johnson, 1995).'

 

1F or further discussions of ethnicity, anthropology, and symbolism, see Burgess
(1978) and Gans (1979).

85

86

Socially constructed races are the foundation of two nearly separate communities
in Jackson, and have been since the immigration of European settlers and Aﬁican slaves
in the early 18005 (see Chapter 4). Racial conﬂict is also the foundation of decades of
discontent in this area, with Aﬁican Americans and whites living (with few exceptions) in
uneasy sequestration ﬁom one another. The discomse between the two communities, or
lack thereof, is embodied by every person growing up in the town and surrounding
cormties, and shapes the explanations of social inequality. How is this embodied, and

why would these communities develop such different embodiments?

Acquisition of Embodied Traits

Movement patterns are the result of years of forming neural pathways which are
linked according to the function of a particular movement (Quartz and Sejnowski, 1997),
that is, contextualized by the goal of the activity, place, position in space, and the cultural
or social function of the activity. As a young girl, I spent many summer evenings
attending my younger brother’s Little League baseball games, and I was fascinated by one
of my brother’s teammates and his father. This father and nine-year-old son had
something in common: they had the exact same walking pattern.2 They did have similar
builds, but how could a boy consciously learn and imitate his father’s posture in just nine

years? I would wager that if either of them had been told that they walked just alike, they

 

2Some researchers in the ﬁeld of physical medicine suggest that changing postures
can actually inﬂuence a person’s affect. For example, some patients who are depressed
exhibit a slumped posture. When cued to use a more upright posture, their demeanor
changes, and facial expressions become less sad or dull (Burkhart, 1997; also validated by
many personal experiences with depressed patients). This is embodiment and re-
embodirnent in action.

87

would have been surprised, and then perhaps self-conscious of this fact, thereby changing
the way they walked for a period of time. The genetic similarities between these two
people could not explain the postures in isolation from other factors, such as walking
posture as a form of communication, the emotional meanings of a given activity such as
walking, or the cultural or social context of an event in which walking is an integral part.
This exempliﬁes the habitus of which Bourdieu writes. Taken to its inevitable extreme,
this line of reasoning leads one to consider and begin to understand that when groups of
people live in isolation ﬁ'om one another, they form different ways of perceiving and
approaching life events, and ultimately, different interpretations of history and the present
(Hall, 1976). As Ruth Frankenberg described, “. . . experience constructs identity . . .
there is a direct relationship between ‘experience’ and ‘world view’ or ‘standpoint’ such
that any system of domination can be seen most clearly from the subject positions of
those oppressed by it,” (1993, p. 5). Humans create variety across the world through the
process, but they also create conﬂict when differences arise in interpretations, and
particular interpretations are favored in the struggle for power and the distribution of
resources.

As discussed earlier in this document, the Aﬁican American community and the
white community in Jackson have been isolated from each other since the beginning of
the town’s history. Aﬁican Americans have had fewer places to choose to live, poorer
schools leading to poorer literacy levels, lower paying jobs, and less access to daily
business Opportunities. Those interested and successful in moving to a higher social class
learned the “code switching” required in behavior, language, and socialization which

would allow upward mobility in the mostly-white business community (Snow 1993;

88
Stack 1974; Powdermaker, 1966). This code-switching entails speaking less in a variant

dialect and more in a standard English dialect, a change from informal to formal
behavior, and limiting discussion to benign small talk. Children growing up in the white
community remained fairly ignorant that another community existed until exposed to
black children and families through school integration, which did not occur in Jackson
until the 19805 (and is still questionable in several schools). With no economic or social
incentive, and often with negative pressure against it, whites had no reason to cross the

color line and learn about African American culture in their own community.

Western Individualism Meets Embodied History

One of the major issues with race relations today is that a part of our population
says “Why keep bringing up the past? I have done no wrong-J have had no slaves,” and
another part of our society counters with, “This is not over. It will never be over.” The _
following excerpt was found in the local newspaper after discussion of a presidential
apology for slavery had been highlighted in the news media, and was written by a recently
hired community commentator, who is a white woman in her sixties:

Are we truly beholden to correct the mistakes, sins if you will, of our
predecessors? I am so sick of being told that we must make just
retribution for the past! Yes, many Japanese Americans were unjustly
incarcerated, but that is what war is all about. And remember, the
Japanese attacked us! Yes, slavery was wrong and cruel, but as many
black people as white people owned slaves and that was just the way of
life at that time in history. To whom do 1 turn to get retribution for my
ancestor, who was unjustly accused as a witch and burned at the stake? To
whom do I turn for recompense for the political stupidity which caused the
depression and brought such grief and misery to so many? To whom do I
turn for justice for the years my children were made to learn new math and
missed all that good quality time of learning in the classroom? My taxes
paid for that shot of stupidity! Who repays me? Let’s stop whining about

89

the past and get on with today’s challenges of living peaceably together

(“Readers tackle issues from Tenncare to racism”, The Jackson Sun,

March 29, 1998, p. 4F).
The next excerpt is from W, a newspaper targeting the Aﬁican American
community in Jackson, and published by the National Newspaper Publishers Association.
The article is by colmnnist Shirlene Mercer, a well-respected black community activist3:

There was a list from the . . .[Jackson Sun] newspaper which features the

most powerﬁrl [people] in Madison County. No African Americans nor

women were among those listed. . . . I would like to take the privilege of

suggesting several persons who could be matched up with any person of

power and inﬂuence. . . . So many people are being honored in Jackson,

but it is heart breaking to see our community being overlooked. Black

organizations should feel compelled to give honors to those within the
community who spend time dealing with troubled youth and older citizens.

(“Politically Speaking,” 1111mm, January 13, 1998, p. 4)
The language of anthropological theory is key to explaining this schism in understanding
about our history as a nation. How have two groups of people living in the same region
of the world-European Americans and African Americans-developed such divergent
world views on societal issues surrounding race? Cosmological differences, economic
pressures, and continued (and perhaps increasing) separation from each other have
contributed to differing understandings of the past and of the necessary future steps for

. improving relations. Speciﬁcally, the ideology of individuality so strongly endemic to

 

3It should be noted that Shirlene Mercer was also Chair of the Board of Trustees at
the hospital in which I was doing my research, but few white people in the institution
knew of her column or its contents. Ms. Mercer single-handedly started the community
anti-crime marches in Jackson, which were the ﬁrst of their kind in the nation. Ms.
Mercer is also on several state and national hospital organization boards. I would
characterize her as the most powerful and compelling black woman in Madison County,
if not the state.

90

Em'opean American culture clashes directly with the community-oriented Aﬁican

American culture.

Political Economy: The Bottom Line Masquerades as Necessity
Personal independence in daily activities is central to the goals of occupational,

physical, and speech therapy. At times, these goals override and conﬂict with the intent
of the rehabilitation team to guide the patient through purposeful and culturally
meaningful therapeutic activities and to include the patient and farme as a team
members. While working in a small rehabilitation unit within a larger, for-proﬁt hospital
in Virginia, my coworkers and I noted that patients needing physical rehabilitation were
rare and aggressively sought after due to competition with the larger hospital across town.
Frequently, patients were admitted ﬁom a musing home setting, then returned to that
setting having made very few changes in physical or functional status: that is, patients
were no more independent or strong than when they left the musing home, and were not
signiﬁcantly more able to care for themselves. Due to the Medicare rule that patients
must attend three hours of therapy per day in order to continue to qualify for intensive
inpatient rehabilitation, deconditioned and fatigued patients were aggressively
“encornaged” to attend therapies, even when they had no desire to attend. Goals such as
“Patient will be independent in upper extremity dressing” were frequently noted in the
medical chart, when the therapists and nurses knew it probably would not continue when
the patient returned to the typically short-staffed nursing homes. Helping the patient to

struggle through an hour of independently dressing herself was not something that nurses

aids would have time to do once the patient was back in the nursing home, and the

91

patients often expressed the fact that they were not interested in pursuing this goal.
Perhaps a more realistic, meaningful, and patient-centered role for the therapists would
have been to work with patients in the nursing home to accomplish small goals of being
able to feed themselves a little better, or being able to remember and play with their great-
grandchildren. Alas, the hospital needed the income provided by therapy services, and
there were no funds or willingness in the nursing homes to provide ongoing therapy, so
the pattern of admitting these patients into the rehabilitation ward in the hospital
continued. Therapists clung to the sometimes unreachable ideals of physical
independence, rather than enhancing the cm'rent social or familial roles of the patients.

How do all of these concepts affect people labeled as non-compliant, disabled, or
"different" ethnically or according to class? When we examine how institutions are
formed, we see that they follow the ideals, policies, and beliefs of the dominant builders
of the institution. As Geertz suggests, cultural systems have the capacity to express the
nature of the world, and shape the world according to those dimensions (1973). In this
society, white, able-bodied, middle- to upper-class males have had the resources
necessary to build businesses and institutions, and traditionally have had control over the
process of making policies for these organizations. When patients enter a hospital which
has been built and managed by the dominant group, and the patient is ﬁ'om a non-
dominant group, conﬂict inevitably arises.

A scenario I observed which exempliﬁes this difference in cosmology is that of a
physician, Dr. John, who labeled a patient, Martha, as noncompliant, thus ridding himself
of individual responsibility for the illness. Martha became frustrated that Dr. John would

not take seriously her complaints about working conditions at her plant or about the lack

92
of an affordable pharmacy within reasonable traveling distance. In the ﬁeld of physical

rehabilitation, a more common example is the rehabilitation professional who insists on
the therapy goal of independence in dressing and bathing with a patient who knows that
his family will be assisting in these tasks. Conﬂict ultimately arises when the
occupational therapist comes into the patient room for dressing training, and the patient
has already been dressed and bathed by his daughter. The patient may reﬁlse to repeat
these tasks just to placate the therapist (the occupational therapist is required to observe
an activity in order to evaluate the patient’s performance of the activity of daily living).
Upon refusal of this evaluation, the therapist will absolve his or her individual
responsibility in improving the independence in dressing and bathing of this patient by
labeling him noncompliant. The therapist then recommends discharge sooner than he or
she originally intended. This scenario has often been repeated in my twelve years as a
practicing occupational therapist in several cities and states.

Other misunderstandings occur when professionals are unaware of the history or
cultural practices of a patient’s ethnic group. One particular incident involved Mr.
McGee, an elderly black man in the hospital after having suffered a stroke. Hi5 young,
white occupational therapist, Sherrie Hampton, reviewed the OT’s role with Mr. McGee,
stating that she would be coming to his room in the morning to help him get dressed. The
next morning found Mr. McGee already dressed by his family members. When this
occurred on several occasions, another staff member learned from the family that Mr.
McGee had grown up in the deep South, and had known of black men who had been

lynched for being alone with a white woman. Mr. McGee was reluctant to put himself in

93
the position of being alone with a young white woman, especially when disrobing was
required.

Another example of lack of knowledge or comfort between ethnic groups was
described by Toni Proctor, an Aﬁican American rehabilitation technician: “I think a lot of
white therapists are afraid of blacks. They have no idea what to do with black patients’
hair. Most times they just leave their hair uncombed in the morning, because they don’t
know how to ﬁx it. They could at least take a comb to it!” Maggie Anderson, a white
therapist, relayed another example of ignorance among health care professionals. She
recormted the story of a young white therapist working with African American patients
for the ﬁrst time. The therapist, Janice Gunner, saw the bath water that a black patient
had used, and commented on how dirty black people were, as evidenced by the dirty bath
water. Maggie pointed out to Janice that used bath water has signiﬁcant amounts of skin
cells, and that it is easier to see the darker skin cells of darker people in a light colored
bath tub.

The community orientation of the Aﬁican American culture may be related not
only to cultural roots in various Aﬁican cultures, but also to economic necessity (Stack,
1974). One family with whom I had contact experienced economic upheaval with initial
loss of the sole breadwinner. The family abruptly changed ﬁom a solidly upwardly
mobile, middle class family to a family headed by a single mother raising three children
on a quickly diminishing bank account. As ﬁnances became more sparse, the values of
ﬁerce individualism in maintaining a certain ﬁnancial lifestyle gave way to an emphasis
on sharing resources with another single mother and her children and seeking money and

assistance from the extended family, close friends, and former business partners. Hence,

94

a community network was formed to ensure stability and prevent the family ﬁ'om having
to seek governmental assistance or ﬁling for bankruptcy. This example suggests that
below a certain critical income level, networking and sharing can become vital strategies
for providing for families. Since Aﬁican Americans are over-represented in the lower
socioeconomic categories (as described in earlier chapters), more African Americans are
at or below this critical income level. Networking and sharing of resources is common in
lower income Aﬁican American households (Stack, 1974). This process facilitates the
development of a community-based rather than an individual-based concept of self in low
income Aﬁican American communities.

The divergent values of individualism and the socially embedded self facilitate the
conﬂict manifested by the newspaper columnists quoted earlier in this chapter. Another
factor. which continues to widen the divide is racism. For instance, a vast majority of the
white Americans with whom I came in contact and who were native to the area believed
that interracial marriages were wrong. When questioned further about these beliefs, most
espoused feelings of negative regard toward Aﬁican Americans in general. While in a
grocery store one day, a white woman (assuming that I believed as she did) saw a white
mother with interracial children and said to me “Isn’t that awful? Why would she want to
do that?” The meaning of her statement was obvious: the white mother had committed a
wrong by having children with a black man. Another white man commented on the
difficulties that a rural hospital was having, explaining it by saying “Well, they have a

black administrator,” indicating that this was the obvious explanation for the struggles the

95

hospital was experiencing.‘ Some Aﬁican Americans also had negative attitudes toward
interracial bonds, but these attitudes were more often expressed as resentment towards the
black person for abandonment of the race. While it has become chic to equate anti-white
prejudice with anti-black prejudice, I have found that they have different origins, as the
aforementioned example shows, and they certainly have differing levels of power and
inﬂuence. When the vast majority of the successful businesses are owned by whites, and
the majority of public offices are held by whites, the power differential is unquestionable.

As with the example of Darryl and Jackie in the beginning of this chapter, the two
major racial groups in Jackson are operating on different maps of how the world works.
With neither party ever communicating deeply with the other, these differing experiences
facilitate conﬂict and misunderstanding. Even those who had prided themselves on
having “seen the world” still viewed the world through lenses shaped by years of

separation, assumptions, and ignorance of the other.

Reproduction Through Objectivism

One way that obj ectivism inﬂuences therapeutic interventions in health care
settings is by the construction of ofﬁcial knowledge. In one pilot project for this study, I
studied the experiences of patients within a rehabilitation unit in a hospital in Michigan.
The following incident at the facility is an excellent example of the thorough embodiment
of official knowledge by staff members. I was helping a new patient learn to get dressed.

She had been admitted to rehabilitation for her weakened condition after a fall at home

 

4These examples are a small sample of comments that took place on a daily basis
in Jackson when white people were together without minority presence.

96
and a brief hospital stay. She spoke only Spanish, so 1 communicated with her in my
halting Spanish. She was 86 years old and was able to do most of the tasks, except
putting on shoes and socks. I probably could have encouraged her to do more of her
morning routine without my help, but I like to get to know the patient before I feel
justiﬁed in deciding whether the patient just needs a little encomagement. I was not Mrs.
Sanchez’s primary therapist, and I did not know whether getting dressed independently
was her own goal, or just the standard rehabilitation goal.

When I asked her "gDesayuno?" (Breakfast?), she replied "No" and rubbed her
stomach and made a face as if she did not feel well. I then asked "gCafe?" (coffee?), to
which she also replied no and pointed to the bed. It is a general policy on the unit that
once patients are up for the morning, they should stay up in order to build their
endurance, which is usually quite poor. Exceptions are sometimes made for especially
deconditioned patients, but no exception had been made in this patient's case. The
patients are often awakened at 6:00 or 6:30 am, and then breakfast does not arrive until
7:30. The ofﬁcial rhetoric for the schedule of a rehabilitation unit is stated in terms of
what is best for patients, but I have often found through countless staff meetings that
. hospital ward schedules are based on staffing needs, and accomplishing necessary tasks
with the fewest staff possible. This conﬂicts with some patients’ needs to maintain a
schedule more like home. I had come into her room at 7:30 to help with self-care
(washing, hair care, dressing) before she ate breakfast, then she had obviously not wanted
breakfast after getting dressed and bathed, but she did want to lie back down (by this time
it was a little after 8:00 am). I made the decision to help her get in bed so she could rest

until her next therapy at 9:30.

97

A few nrinutes later, one of this patient's roommates wanted some orange juice, so
I brought the roommate the juice. Mrs. Sanchez then said "5Naranja? Tambien." (she
also wants some orange juice). Another possible conﬂict arose in my mind—was this
patient expecting breakfast in bed? This is a practice that is discouraged on all
rehabilitation units, since the idea is to create an atmosphere to encourage independence
in self-care and to simulate the home atmosphere. Eating a meal in bed was probably not
what she would experience at home (I would naturally check this out with her family,
though others would just assume this). I said "What the hell" to myself and brought Mrs.
Sanchez the OJ for which she was thankful and seemed quite satisﬁed.

Twenty minutes later I was confronted by one of the orderlies, whom I will call
Tom Beadle. He said, "Did you put Mrs. Sanchez back in bed?" I replied, "Yes." Then '
Tom said "She needs to eat breakfast." I said "I asked her if she would go to breakfast,
and she said no. I even asked her if she would just go down [to the dining room] and
have coffee, and she said she didn't want to. She wanted to lie down, so I helped her lie
down." In the background, one of the RN 5 said, "Mrs. Sanchez does not like to get up
early!" Torn ignored this and replied to me, "In order for her to go through therapies, she
needs energy. So she needs to eat breakfast." I repeated, "She didn't want it. " Tom had
not inquired whether Mrs. Sanchez normally ate breakfast. I knew Tom was probably the
one who had gotten Mrs. Sanchez up early, and I knew his method would have been to
wheel her down to the dining room no matter if she said "No!" all the way down the hall--
I had seen it done this way. I did not have time to ﬁnd out if in fact Tom had gotten Mrs.

Sanchez out of her bed and made her go to breakfast. I began to dread the meeting I

98
would probably have with the nursing supervisor or ﬁom the manager of the rehab unit,
anticipating that I would be reminded that "you can't just do what the patient wants."

I have found this type of incident, in which the patients wishes are placed below
the priority of what the staffs "knows to be true," to be frequent. These “truths” often
included but were not limited to: 1) eating with a group whenever possible, facilitating
“normal” socialization; 2) awakening in time to begin therapy at 8:00am, as this was the
“normal” time to start a day; 3) attending therapy despite feeling nauseated or severely
fatigued, as this was “the only way to gain endurance and strength back.” These official
explanations hid other possible explanations, namely that the above guidelines also make
staffing easier and more efficient in a hospital ward, cutting down on costs. This
indicates the inﬁltration of objective and ofﬁcial knowledge into the daily action of staff
members. My own willingness to ensure that Mrs. Sanchez dressed and bathed herself
without ﬁnding out if this was actually her own goal was the ﬁrst level of enforced
ofﬁcial knowledge, and was followed by my questioning her decision not to go to the
dining room for breakfast due to the "tru " of the belief that eating alone in your room
encourages isolation and dependence on people to serve you (which are negative states of
being according to official rhetoric).

The orderly enforced the rules which I failed to enforce; this is an example of the
concept of "dominated dominators." One of my coworkers harassed me for the ﬁrst
several months of my employment there about howl need to "push" the patients, and I
"shouldn't just let them manipulate me like that." After all, our goals were to get the
patient to be as independent as possible in self-care so they could be discharged as soon

as possible, with the implication that this would decrease the costs for the hospital and

99
insurance company. This exempliﬁes the pressure to conform to the official knowledge
of the rehabilitation unit, and reveals the relative lack of freedom which the staff
members have in acting on their own practical knowledge, or the knowledge of the
patient. As Lorna Rhodes (1991) found in her ethnography of an psychiatric unit,

Though the staff sometimes used the vocabularies of institutional and

community psychiatry, what they were doing did not ﬁt into either model.

They were practicing something else—getting patients out (p. 171).

This discussion is further informed by the concept of the hospital as a field of
power. According to Bourdieu (1992),

The ﬁeld of power is a ﬁeld of forces deﬁned by the structure of the

existing balance of forces between forms of power, or between different

species of capital. It is also simultaneously aﬁeld of struggles for power

among the holders of diﬂerent forms of power (original italics; p. 76).

The hospital has many holders of different forms of power, each struggling for control of
the dominant ideology, dominance over the patient, economic capital, prestige, and
cultural capital.

Therapists and other staff members may therefore not only be the dominators, but
are also dominated by the ﬁeld of power within the hospital. The hierarchical nature of
the hospital creates varying levels of power, encouraging competition for power over
others at lower or equal levels in the hierarchy. This competition was frequently played
out during "team conferences," in which the therapists, nurses, and doctors discussed the
patient's problems and goals, and in which they competed for dominance in the
explanatory models of illness and courses of action. The patient's statement of goals or

explanatory models were rarely discussed during these meetings, as the "team's" goals

had primary importance, with the "family considerations" given next priority. This

100

example demonstrates that understanding the political economy of health care settings in
the United States is paramount to informed discussions of patient and staff relations in a
physical rehabilitation rmit.

Political economic forces are powerful variables in health care settings (Morsy,
1990). The majority of patients in most rehabilitation units are elderly and have sustained
strokes, and Medicare is a major payer source. Medicare regulations often deﬁne how a
rehabilitation rmit is structured. For instance, in order to qualify for inpatient
rehabilitation, the patient must have a “medical necessity”5 for at least two of the
following: occupational therapy (OT), physical therapy (PT), and speech therapy (ST).
While in the rehabilitation unit, the patient must receive a total of at least three hours of
these therapies for at least ﬁve days per week. Nursing education time, psychological
testing or counseling, services from a social worker, time spent with the physician, or
therapeutic recreation (all vital services) cannot be used as part of the three hours. This
regulation often causes difﬁculties when patients’ needs are not consistent with Medicare
rules. Although skilled nursing beds are intended to be utilized for those patients who
cannot tolerate three hours of therapy per day, these gravely ill patients are sometimes
admitted to the rehabilitation unit anyway for lack of other beds available, and are quickly
scheduled for the difﬁcult therapy regime. The struggle to make the patient conform to
therapy and nursing schedules begins with the thought that the patient will ultimately

suffer economically when Medicare denies payment, as will the hospital.

 

"‘Medical necessity” is a third party payer code phrase for requinn' g physician
consent, prescription, and rationalization.

101

Charlie Jones, a patient in the rehabilitation unit after a complicated recovery ﬁ'om
heart surgery, was exhausted by 11:30am, and had already argued with his occupational
therapist about whether he needed to wash more thoroughly when bathing. Then his
physical therapist came into his room and said it was time to walk. "I really am too tired.
I don't want to do this right now. " The PT cajoled and pressured Mr. Jones into
participating by reminding him that he needed his strength in order to go home as soon as
possible, and that lying down would only make him weaker. As she explained this, she
began to push his wheelchair (with him in it) out the door of his room. He did not
attempt to stop her, but sighed and seemed to have resigned himself to attending therapy.
He refused to walk in his afternoon session. The PT stated that she felt that Charlie
should be discharged ASAP because this had happened on three consecutive days, and
Medicare was "sure to deny payment on this one."

Physical rehabilitation is situated within the economics of the "bottom line"
climate of hospital administration. The term "reﬁrsal" is used in discussion and in the
medical chart when a person declines to participate in therapy or some procedure. This
highlights who has the power of interpretation—obviously, the staff has this power. Any
comments that patients make can be used to characterize their attitudes that day, which
can be damning in the eyes of an insurance company or in a court of law. For example, if
it is recorded that a patient is "uncooperative and reﬁlses therapy," the insurance company
may use this to deny payment for the whole stay in the rehabilitation unit.

The general requirement by insurance companies (started by Medicare about 15
years ago) is that patients in rehabilitation units must get 3 hours of therapy a day. If the

patient "refuses" and it is recorded as such in the chart, and the patient has not received at

102

least three hours of therapy, then the insurance company may decide to "refuse" to pay the
bill. At least this is what therapists are taught when learning about chart documentation
for insurance companies. The patient's reasons for refusal are not always investigated,
although I must give credit to the psychologists on the rehab units who frequently did
explain why a patient might be refusing. It is interesting that most patients who decline
therapy more than once are considered a case for the psychologist by the other
rehabilitation team members.

This system reproduces itself with little encouragement from the outside, as
therapists rarely if ever receive feedback regarding an insurance company's denial of
payment. Most staff members assume that this is the reason for recording "refusals" and
attitudes in the chart; however, I have never met a therapist who has had personal
experience with lack of payment by an insurance company for an inpatient. (I have
personal experience with this for outpatients, but not because the patient refused
treatment.) The feedback loop can often take two years for the rehabilitation physicians
(called physiatrists) to receive notice by the insurance company; the physiatrists may
choose to address the problem themselves (I have heard them discuss cases, but not
speciﬁcally patient reﬁrsal cases), "and often the original staff members are no longer
employed by the hospital. From past personal experiences and from comments from
other therapists, I suspect it is just the possible threat of non-payment by insurance
companies that keeps the therapists following the "rules."

I have heard therapists (including myself) justify their actions in enforcing the
three hours of therapy rule with a vengeance by stating that if they do not make the

patients go to therapy, the patients will just get a bill from the hospital that they will not

 

103

be able to pay (the cost of a few weeks, considered a short stay in a rehab unit, can easily
total $50,000). Most of the patients we saw would be quite upset at getting this bill and
would not be able to pay it off, even in installments. I recently learned, however, that
when Medicare or Medicaid (which cover a large majority of rehab patients) refuses to
pay, most hospitals’ policy is not to even send a bill to the patient. Of comse I was told
by the billing department in one facility not to advertise this fact, the implication being
that patients would learn of this and take advantage of the system. Rarely will a therapist
actually tell the patient of the true consequences for refusing therapy. I have the
impression that it is just too much trouble to explain the intricacies of insurance coverage
to patients who rrright have difﬁculty understanding the reasoning. In fact, I suspect
(from personal experience) that the act of explaining these "facts" to patients would
illuminate the economization of the health care system by turning the patientsinto parts
of a dehumanized equation" Could it be that non-payment by insurance companies for
the reasons of "patient refused therapy" is relatively rare, and that the system is just using
the therapist in this way to stay aﬂoat econorrrically, or to make a proﬁt (since a
signiﬁcantly increased proﬁt can be made ﬁom time spent in therapy)? What does this

. tell us about the role of the patient in this decision making process?

Agency, Resistance, and Consciousness
I have drawn heavily from Bourdieu’s theory of praxis in this document, however

some signiﬁcant shortcomings in Bourdieu’s theory should be noted. In the following

 

’See F romm's (1992) translation of Marx for a more detailed account of alienation
suffered by those caught in complex, economically-based systems.

104
section, I augment Bourdieu’s theory with more emphasis on individual agency and
consciousness, and the various forms of resistance.

Bourdieu suffers ﬁ'om his own habitus, including his background of structuralism.
Although he attempts to free himself from the oppositions cherished by the structuralist
school, he continues to use oppositions to explain conﬂict and self-identity throughout his
writings (1990). This tendency toward black and white explanations prevents Bourdieu
from explaining the gray areas that inevitably occur in human interaction, involving
agency, power, and resistance. If Aﬁican Americans are socialized to wield less power,
how does that explain the Shirlene Mercers of the region? Although a group of people
may have similar backgrounds in social conditioning, each is still an individual, with
unique aspects of family, personality, emotional response, and thought patterns. The
habitus guides some along the majority path of nondiscursive normative rules and
encourages resistance among others. Predicting exactly who willoresist the norm, and in
what way, is rather like trying to predict which root of a tree will end up growing in a
certain direction--impossible. Maj or trends, however, can sometimes be foreseen. Such
is the case in Jackson, Tennessee.

The example earlier in this chapter of the patient named Charlie is a case in point.
Charlie’s only path of resistance left available was to choose to do nothing, which
probably resulted in a desirable course of events: discharge ﬁ'om the hospital. Some
patients resisted therapy through aggression and anger, some through despair and
depression. Others used denial to fend off the perception of permanence of a disabling
condition, refusing to participate in difficult therapy activities because “I will be able to

do it just ﬁne when I get home [and am cured].” Resistance in Jackson tended to be

105
passive aggressive, as direct confrontation was the ultimate of social sins in this
community. One elderly white woman with whom I worked in outpatient therapy
requested some more physical therapy in addition to the occupational therapy services I
was providing. When the doctor approved and the patient discovered that she would be
seeing a Filipino PT, she suddenly asked for a transfer to another facility which was
“closer to home and more convenient”-this when she had been coming to see me for
three weeks. In the culture of Jackson, and much of the conservative South, telling me
that she preferred not to have a minority male work with her would have been considered
an unacceptable social faux pas.

Other passive aggressive resistance techniques common to the area were using
different levels of congeniality and helpfulness in customer relations. Class, race, and
region of origin (and the degree of similarity or lack thereof to the service provider) were
the markers used to measure the kind of interaction which would occur.

The heaviest criticism which 1 must level at Bourdieu and other anthropologists
who ignore or devalue the theories of their informants, is the contention that:

Native theories are in fact dangerous not so much because

they lead research towards illusory explanations, but rather

because they bring quite superﬂuous reinforcement to the

theory of practice that is inherent in the obj ectivist

approach to practices . . . (Bourdieu, 1990, p. 102).
With this statement, Bourdieu has negated all former statements about the importance of
the native construct of reality, and in fact denies the theory of praxis. The assertion that
native theories are dangerous suggests the supremacy of the objectivity of the observer.

He conveniently sidesteps this criticism by postulating that once a person attempts to

bring to consciousness the reasons for a practice, that the experience of practice

106

immediately takes on new dimensions, and that the experience is no longer in its original
state. For this reason, he discounts the theories and musings of the native as to why he or
she is performing a ritual or practice.

Ruth Frankenberg (1993) put it another way:

there is a link between where one stands and what one perceives . . . the

oppressed [or least advantaged] can see with the greatest clarity not only

their own position but also that of the Oppressor/privileged, and indeed the

shape of social systems as a whole (italics mine; p. 8).
It would seem a shame not to include the voices which might possibly present the clearest
view of the system. I propose that the absence of the native voice in ethnographies
demonstrates that we as anthropologists have much work to do in order to practice
praxis.7 Fairclough theorized that ideologies legitimize existing social relationships
through the acceptance of "common sense" or shared knowledge about situations and
people. Power differentials often go unrecognized in social situations, such as with the
example of a physician confronting a medical student with questions about the student’s
clinical reasoning and resultant actions. The doctor has the power to interrupt, embarrass,
and question, while the student generally accepts this use of power without questioning it.
Fairclough stated that text was a dialectic between self and other situated in context and
social conditions (1989).

Ricoeur was also a post-structuralist who placed the language event at the center

of his studies. Ricoeur felt that by concentrating solely on langue (the structure of

 

7For similar postulations, the extensive literature on the crisis of representation
experienced in American anthropological circles provides stimulating reading: di
Leonardo, 1991; Kim, 1990; Lewin, 1992; Ortrrer, 1984; M. Rodrnan, 1992; W. Rodrnan,
1991; and W. Rodrnan, 1992.

107

language) rather than the parole, or meaning and context of a speech event, that we
actually do violence to linguistic experience. By not examining power and ideology,
structuralists actually reify the status quo (1978). Discourse is “a space grown more, not
less, proliﬁc in the face of modernity and postrnodernity. Caught in a cultural order of
things and yet still ex-centric and vulnerable, it depends on the claim that things are not
what they seem,” (Stewart, 1996).

Bourdieu and other anthropologists were correct in stating that bringing
something to conscious thought immediately changes it, but that does not invalidate it.8
For example, if a golfer or tennis player is asked to analyze his or her own swing or
backhand, he or she will often suddenly be unable to repeat the movement. In the process
of explaining it, they can lose the unconscious or subconscious aspect they had embodied,
and can lose the ability to perform it automatically and smoothly. The same can be said
for discussions of concepts. The acts of observation and questioning can change
behaviors and thought processes in subtle or signiﬁcant ways, but those thoughts and
behaviors are the very streams of ethnographic evidence in which anthropologists try to
swim. William Rodman states:

the anthr0pologist . . . was as much the question as the questioner. . . . and

so are all ﬁeldworkers: the people we study us, even in moments when we

do not seek to study them. We are not just observers observed; we are

interpreters interpreted. To ﬁgure out what the devil they think they are up

to requires us to try to ﬁgure out what they think we are up ton-our

motivation, purposes, and (sometimes) the moral message we bring with

us. This is an Other side to reﬂexivity, one crucial to understanding the
dialogics of encounters in ﬁeld research (1991, p. 433).

 

8Duvignaud (1970) offers an illuminating example of the effect of ethnographic
research on the people and events studied, and the profound effect the anthropologists had
on the village.

108

Consciousness on the part of the informant should not negate the theory, but rather should
be woven into the ethnographic analysis. The anthropologist cannot know what the
native knows in the nondiscursive parts of his psyche/body/being. It is my contention,
however, that there are those few individuals in each subject group who concentrate on
bringing these constructs into conscious consideration, and form theories which have
richer meanings than any of those who could come from the outside. To health care
workers I would also'say: “Listen to your patients. They have much to say with their
words and their actions.”

Culture is in part deﬁned as common or shared understandings we use to interpret
our daily lives. The only way to have shared understandings is with communication,
through the medium of language. Language and culture are intimately interwoven, each
inﬂuencing the other during a human interaction. When we use language during a speech
event, we are in essence reproducing our culture. Agency enters into this equation with
our own individual interpretations and actions, and the unique ways we may each
reproduce the structures and forces prevalent in our lives. Language allows us to bring
these understandings outside of ourselves, opening the door for the exchange of ideas and
interpretations with others, thus shaping societal change and reproduction.

Embodiment is a central tenet of this study, incorporating a process in which the
individualism of the white American biomedical system overrides a more socially
embedded concept of self of Aﬁican American patients. Objectivism and official
knowledge are major pillars in the medical disciplines and help to reproduce the system.
Political economy must be examined before a full understanding of the construction of

policies (both written and unwritten) can be explained. Agency, resistance, and

109

consciousness are present in the daily actions of patients and health care professionals, as

my examination of noncompliance demonstrated.

CHAPTER 7

POWER AND RESISTANCE IN THE REHABILITATION EXPERIENCE

The ideal of the “good,” compliant patient or the “good employee” is revealed in
the following pages as an ideology which helps to control the time, econorrrics, and
behaviors of those within the institution. Other encounters illuminate the continued
struggle for identity and power along the lines of race and professionalism. Echoing the
concerns of Rhodes (1991) in her examination of a psychiatric unit, I have attempted to
examine many sides of the issues, but have found it problematic to represent all sides
simultaneously. I have intentionally represented the patients more often than staff, whose
words, especially of the professional level staff, are represented almost exclusively in
many other ways, i.e. professional journals, the medical chart, and team meetings. These
cases by no means represent a “norm,” but have been selected for the power and
resistance inherent in their journeys through the rehabilitation experience.

Of the 1,233 patients which were admitted to the rehabilitation unit while 1
completed my interviews, ninety percent were white and nearly ten percent were African
American. Less than ten individuals were of other ethnicities.l This ratio differs
markedly ﬁom the population of the region in general (estimates of the African American

population in Jackson range from forty to forty-ﬁve percent). It should be

 

1See Table 2 for rehabilitation patient population statistics.

110

111

Table 2: Statistics on Rehabilitation Patients in the Unit (1996-1997)
Total # patients: 1,233

Gender
Female 72%
Male 28%
Race
White 90%
Aﬁican American 1 10%
Insurance
Medicare 77%
Private Insurance 9%
Tenncare (Tennessee Medicaid) 6%
Other (HMO, CHAMPUS, etc) 4%
Uninsured 4%
Diagnoses
Orthopedic (hip replacement, fractures) 45%
CVA 31%
Debility 10%
Brain Injury 5%
Spinal Cord Injury 4%

Other 5%

112

noted that the hospital adnrits patients from a seventeen county region, and many of these
counties have percentages of African Americans ranging ﬁom twenty to thirty-ﬁve
percent. The question of why only 10% of rehabilitation patients were Aﬁican American
was ﬁrst posed to me by a young African American medical resident in Michigan during
my pilot study. He noted that African Americans have a signiﬁcantly higher rate of
hypertension and cerebrovascular accidents, or CVAs, (Dressler, 1991a), and that CVAs
made up the largest portion of patient diagnoses (forty percent of rehabilitation patients
had had a CVA). The roomful of white physical and occupational therapists to whom the
resident physician addressed the remark had not considered these statistics before. Some
suggested that the rate of survival from CVA was lower due to the probable increased
severity of hypertension among African Americans. When it was suggested that African
Americans had less access to health care, an uncomfortable and thoughtful silence
followed. It has been my experience that most white health care professionals prefer to
deny the possibility of institutionalized racism than to consider its existence and its

possibly devastating effects.

Team Conferences-Findings

Often, the therapists would initiate discussion with the team regarding a patient
who was reﬁrsing to participate in an activity, with the intent of encouraging the physician
to act on this information. Expectations of action included a variety of suggestions,
ranging from talking with the patient, to early discharge from the hospital, or discharge to
another setting (such as long term care in a nursing home). Professional level staff

members identiﬁed noncompliance in thirty-ﬁve percent of the patients during my tenure

113

in the rehabilitation rmit.2 In half of these cases, I noted signiﬁcant differences (and
implied lack of understanding) between the staff members and the patients. These
differences included ethnicity, class, region and culture of origin, and educational level.3
I present the following cases to illustrate the difficulties experienced by patients who do

not ﬁt the “ideal patient” category, and explain the details of each case.

Voices

Georgia Nimke was a woman in the rehabilitation unit who had spent several
months recuperating in a long term care facility. Georgia had a rare tumor removed from
her spinal cord and required therapy in order to regain the strength lost while on bed rest
post-operatively. Georgia was a middle-aged white woman who had spent much of her
life struggling to be a single mom on a pink-collar salary. She was from the Upper
Midwest and was an assertive, no—nonsense woman. Her physical therapist was an

inexperienced young white woman from West Tennessee“ who complained in team

 

2This did not encompass the larger category of patients which were considered to
have “motivation” difficulties, but included only the patients which were more distinctly
identiﬁed as noncompliant.

3Gender has not been addressed more speciﬁcally in this study, due to a variety of
factors. Most of the health care professionals working directly with patients are women,
therefore ﬁnding examples of gender differences was problematic. Also, a signiﬁcant
majority of patients are women (72%). Gender is beyond the scope of this document, but
is a subject worthy of further investigation.

‘The fact that one woman was from West Tennessee in this interaction is
signiﬁcant in that people in general, but women in particular, from the South are deeply
discouraged from being assertive. Negative comments are not aired publicly, but may be
communicated to parties other than the person directly involved. Most informants
commented that it “was not proper or nice to say something bad,” even if it was
constructive in content. Conﬂicts were therefore not settled face to face, but required a

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conference that she was having difficulty getting Georgia to cooperate with the intended
endurance and ﬁequency of ambulation goals. The physical therapist wanted the
physician to speak to the patient, and to encourage her to participate more ﬁrlly in her
therapy. She also thought the psychologist should get involved in this case.

When I interviewed Georgia, we chose to go outside the building so that Georgia
could smoke at will. Georgia spoke of her fatigue and depression, as well as some of the
highlights of being a mother and career woman. She was an intelligent woman facing her
near future as a partially disabled person, and was having difficulty coping with the
devastating events fate had dealt her. She had little support ﬁom any source. She was
aware that the physical therapist wanted her to do more and do it faster, but her discharge
from the hospital was to be only the beginning of another difficult struggle, one that she
was not anxious to hasten. She was undertaking what she felt to be a reasonable pace
after several months of not walking. She and the physical therapist had discussed her
general goals, but they had not discussed the speciﬁc goal of walking 200 feet two to
three times per day. The speciﬁc short term goals are set by the primary therapist, with
the long term goal of reaching independence in home activities in the shortest time
possible. Perhaps if they had discussed and negotiated this goal, the conﬂict would have
been avoided altogether. The psychologist, attempting to ﬁnd a compromise between
therapist and patient, suggested giving Georgia reasonable choices and encouragement for

every step taken. The physical therapist was trying to facilitate the movement of this

 

number of individuals to circumnavigate the person at issue, with problems and solutions
directed at anonymous groups, rather than particular individuals. Persons ﬁ'om the Upper
Midwest tend to be direct, which upset those accustomed to a non-confrontational style of
communicating.

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patient onto the next level of the “critical path’” toward hospital discharge. Georgia was
using individual resistance to delay discharge from the hospital to a less than hospitable
life, a reasonable goal by many standards, if not by hospital standards. Georgia was
eventually discharged ﬁ'om the rehabilitation unit and went to live with her daughter and
grandchild. She requested a copy of my dissertation and left her forwarding address.
Georgia’s case was a common example of the rehabilitation team setting goals
during team conference without the patient present, and without the patient’s
collaboration or agreement. Regulations are in place to ensure patient participation in the
goal-setting. However, the only mechanism to ensure that this happens is an occasional
(once every three years) visit from an accrediting agency. At the time of the inspection,
charts are reviewed for evidence of consultation with the patient or family regarding the
goals. If staff members have mentioned in the medical record that the goals were
reviewed with the patient, this will usually suffice. Often, therapists may brieﬂy discuss
the goals that the therapist has chosen with the patient or family, but the therapists do not
allow time for discussion or alteration of these goals. Heavy pressure ﬁom administrative
directors places therapists in a difficult position: getting the patient through the necessary
activities in the quickest amount of time, or be continually counseled, then disciplined

regarding the lengthy hospital stays.

 

5A “critical path” is a term commonly used in hospital systems for the ideal
treatment plan for a given diagnosis. In the realm of official knowledge, it involves a
suggested ﬁnite time line, and is used as an evaluation device to suggest a sequence of
activities to be accomplished. Unofﬁcially, it is used to present intended time lines to
third party payers, and to facilitate the shortest length of stay possible. Many critical
paths do not allow or encourage social and psychological adjustment to phases of
treatment.

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While many patients passively go along with goals that are set by the team,
Georgia resisted the pace of the goals set for her. She used what methods she could to
slow the process to allow herself more adjustment time and to delay the inevitable. She
would be going to her daughter’s home, with little support or income, and would need to
help care for her granddaughter. Although Georgia was considered to be manipulative by
the team members, perhaps her actions were not illogical, but resource-conscious and

driven by fear of the future.

“Josephine”

Josephine McGregor was another example of a patient who resisted the
suggestions of a therapist. Josephine was an occupational therapist who had undergone
knee surgery due to a work related injury. In contrast to Georgia, Josephine had a
complete understanding of her own rights and an in-depth knowledge of her alternatives,
and she insisted on using a walker instead of crutches due to other health concerns. The
physical therapist was taken by surprise by this assertion from a patient and promptly
modiﬁed her plan without ﬂagging the treatment team to “encourage” this patient. Her
higher class standing, greater educational level, and better internal knowledge of hospital
policies allowed Josephine to make choices more easily and which ﬁt her circumstances
with less conﬂict than Georgia had experienced. Generally, the patients who had class,
educational level, or social background in common with the staff were able to negotiate
through the health care system with more case than those who had less in common with

the staff members.

 

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“Grace”

Education was an essential ingredient in determining job potential, as well as a
foundation to wield considerable power in a given patient-staff situation. The education
level of many Jacksonians and the surrounding region was low. The higher the
educational level, the more successful the patients were in wielding the power to make
choices during rehabilitation. Grace Simon was an Aﬁican American woman in her
forties who had been involved in a car wreck, and had sustained multiple ﬁactures and
contusions. She was a 2”d grade teacher in the local school system, and she was
categorized as a “multiple trauma” patient from a car wreck in which she suffered a
broken pelvis, a broken leg, and a crushed forearm. She probably also received a mild
head injury, but that seemed to have resolved.

She was born and raised in Gary, Indiana, then attended college at Lane
University here in Jackson. Her parents were originally from Alabama, but they moved
up to Gary in the 19405 when her father had heard there were many jobs available in the
steel mills. Her parents had 2 children at the time, then had 7 more after moving to
Indiana. Her mother still lives in the same house. Grace considered herself to be from a
. middle income background. She was married and had 3 children, with the youngest 3
years, then a 12-year-old, and a 15-year-old.

Grace had a serious demeanor, with a hint of steel nerves. She was very forthright
in talking about some of her experiences in the hospital, such as the ﬁrst time she was
turned while in traction for her leg and pelvis. “I was in excruciating pain, and I
screamed for them to stop [turning me in the bed]. The nurses and orderlies must have

been accustomed to this, because they didn’t say much and just kept light on. I don’t

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blame them. I know they were doing what they had to do, but I just felt so helpless.”
Otherwise, she was very pleased with the care she got ﬁom the staff on the acute ﬂoor.

When she began to talk about the staff on rehab, speciﬁcally the techs and aids on
the nursing unit, she became almost angry, and said she felt they treated people with no
respect, and treated them as if they were children. She said that she had to make it clear
that she would not be talked down to, and that other patients seemed to fear the techs and
aids. One example she gave was at mealtime, when most hospital patients are allowed to
choose whether to eat their meals. The rehab patients, however, are cajoled, ﬁightened,
and harassed into eating their food, even if it is something they had chosen not to eat.
During mealtime, the tone of voice and phrasing of the aids‘5 reminded her of how people
speak to the mentally retardednvery patronizing. Grace also described the “pass the
buck” syndrome as being very bad on the nursing unit for rehab. An RN may come to the
bathroom responding to a call, and when Grace asked for a soapy. washcloth, the nurse
would say “I will go get a tech to do that.” The amount of time it took to ﬁnd a tech
would probably have been more than getting the soapy washcloth herself. This was very
frustrating to Grace. She felt that these kinds of behaviors were common on rehab, but
not on the acute ﬂoor where she had been.

When I asked Grace if she had experienced any problems which might have been
ethnic or racist in ﬂavor, she said that the only thing she experienced was that “some
people act like I’m a welfare case [just because I amiblack].” No one looks their most

professional or best when a patient, and Grace dressed in T-shirts with matching

 

6 Most of the aids are black women who have worked in the hospital for many
years.

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bandanas covering her hair. She felt people were assuming she was low-income and
poorly educated because she was black. Beyond this statement, Grace did not seem to
wish to go into any more details on the issue of race. She did say that she felt that the
problems she had described applied mainly to nursing staff. We did touch on the lack of
power a person has when a patient on rehab. She gave the example of when the nurse
was orienting her to the therapy schedule the ﬁrst day. Her breakfast was at 7:30, and her
therapies started immediately after. Grace assertively asked, “What if I don’t want to get
up and go at that time?” The nurse looked blankly at her, then repeated that this was the
schedule she was to follow. Grace rephrased her question, and the nurse again seemed to
be puzzled and clueless about Grace’s hypothetical question. At that point, Grace said
she left it at that, and decided to cooperate.

During her hospital stay, Grace initiated two more brief encounters—she seemed
anxious to support my work and proud of being asked to participate. One day, Grace
caught me in the hallway and told me excitedly that she was being discharged the next
day. She had a ﬁiend from church and her oldest daughter there. Her daughter was
complaining that the youngest sibling, for whom the daughter had cared for the last 3
months, was spoiled. Roberta Simon and her mother argued about whether the young
child was spoiled, and discussed her likeness to the grandmother or aunt who was also
instrumental in her current care. As Roberta left, Grace called out for her to come back
tomorrow, and to dress up (she was in jeans and a t-shirt), to which Roberta replied, “I
might.”

“You better!” carped Grace down the hall.

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When asked what brought on the discharge (over a week ahead of time), Grace
responded that God felt that she was needed at home now. (I guess I had expected her to
talk about her surprising progress due to her own hard work). “My oldest son [age 15]
has been left on his own a lot, and coming in late at night, and I knew that God is sending
me home to take care of business.” This was before her daughter had left, and her
daughter stared at her (a little skeptically), while the church ﬁiend added a few nicely
punctuated “Arnens” and “Yes, lord.” It made me think of scenes which Maya Angelou
described of the “pious” Sunday church lady speaking in tongues, then going back to her
usual demeanor and activities the rest of the week. Angelou’s point was that the public
demonstration of the religious intention and fervor of the person can be very important
socially. Inpassing, Grace had mentioned her faith in earlier sessions, but chose this time
(in front of her church ﬁiend) to really glorify God. It was also a joyous time for Grace
after having been in the hospital for 3 months, so this may have been her usual way of
expressing happiness when things took a turn for the better. The look on her daughter’s
face said otherwise, however. Grace also said that God had changed her heart while she
was in the hospital, and made her cherish the life she had. In an earlier session, she also
said the experience made her appreciate older people (referring to the many elderly on the
unit).

Grace asked her daughter if her hospital stay and injuries had affected her, and
Roberta replied “It has affected me a lot! I have been trying to take care of my sister, and
it is work!” I asked how this had affected them ﬁnancially, and Grace seemed not as
concerned about this issue, as she had the forethought and money to buy disability

insurance. “My daddy taught us all the importance of taking care of your loved ones with

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insurance. I even purchased cancer insurance due to several relatives on my dad’s side
having cancer. When I was ﬁrst injured, I was getting regular sick pay as well as
disability insurance checks, then my sick time ran out and my income deﬁnitely
decreased.” The previous session had ended abruptly when she was on the phone (being
quite short) with some relative—possibly husband--in trying to locate some bills. Today,
however, it seemed to be the last thing on her mind.

Grace gave me her home phone and address, and seemed to look forward to my
making a home visit in the future. In talking with Grace, it became more and more clear
to me that many of the differences between patients and staff are economic and somewhat
educational. Grace denied any kind of major race issue involved in their hospital stays,
and she categorized herself as middle class. I have observed a large gap in understanding
between very low income patients and the middle class staff who work with them.

Grace was a professional with a bachelor’s degree in education, and was an
unusually assertive woman for a native of Jackson. She had successfully negotiated a
change in therapy schedules by asserting herself in a ﬁrm, reasonable manner, and used
her status as a professional to gain respect and cooperation from the staff members. She
also stated that some health care professionals assumed she was a “welfare case” just
because she was black. “I straightened them out quickly on that point, and had no further
difﬁculty with it.” Overall, she felt very positive about her experience in the hospital and
rehabilitation unit. While most of the African American patients in the rehabilitation unit
were of lower econonric and education standing, Grace was an exception who used her

status and knowledge to gain what she needed ﬁ'om the health care system. Class and

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education often transcended other categories such as ethnicity or social standing when the

person possessing the “social capital” knew how to use it.

“Monique”

Duvignaud and his colleagues in Change at Shehike; Repert from e No@ Aﬁjgn
Village (1970), successfully communicated the astonishing effect anthropologists can
have on their informants. I experienced this phenomenon in a small and uncomfortable
way when I interviewed an OT student. It was so rare that our facility had an Aﬁican
American student that I was eager to talk with Monique Stapleton. A couple of the
technicians I had already talked to had stated that they felt the Aﬁican American students
who had been at the hospital had been treated much more harshly than the white students.
I wanted to get a sense of whether Monique felt that this was a problem, as she was barely
passing her ﬁeldwork.

I waited until I knew she was passing, then asked her for an interview, which
she was delighted to grant me. Unfortunately, others saw our weekend meeting take
place. (I would rather they had not known). The student was not an exemplary
informant, as she had not really given much thought to conﬂicts among patients and staff,
or between herself and the therapists. I asked open-ended questions, without hinting that
I suspected problems. We Spent most of the interview discussing patients and how they
were adjusting to rehab (or not adjusting). While some African American informants in
the previous months had held back on the subject matter of race and racism (one actually
declined, stating “There’s just some things better left unsaid”), Monique did not seem to

have previously considered the questions I asked about race.

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When the student left our facility having barely passed her affiliation with us, she
wrote on her evaluation of the facility that she felt she had been judged unfairly because
she was Aﬁican American. She mentioned that there were only three people who had
treated her fairly: our two physicians, one who is African American, and one who is
Aﬁican Grenadian, and me! I felt very mixed emotions about having been named in her
evaluation-glad that she perceived me as unbiased about her ethnicity, but dismayed that
all eyes were now upon me about my relationship with Aﬁican Americans at this facility.
In our interview, she had stated that she was being treated fairly, and seemed to have no
conscious awareness of the possible race issues which had been mentioned by the
technicians. She did mention that she thought it was curious that no Aﬁican American
therapists were employed in a system which was the largest employer of the area. I did
not pursue the issue with her during the interview.

To further complicate matters, my picture and brief abstract appeared the same
week in Q 1: Week, the national weekly publication from the American Occupational
Therapy Association. The minute I walked into work that morning, my department
director brought me into her ofﬁce and was nearly in tears, saying she had been accused
of racism, and wasn’t that ironic since my abstract about Aﬁican Americans in rehab had
just appeared in Q] Week?

My supervisor did not attempt to gain information from me about the interview
which she knew had taken place, but another co-worker persistently tried to ﬁnd out what
had been said in the interview. He was a good friend of the supervisor of the student in
question and was asking if I had seen any discriminatory type behavior going on in the

clinic. He knew I had an interview with the student, and was asking if she had mentioned

124

any of this to me. I mumbled something about it being a politically and socially charged
subject throughout the country, and suddenly had an urgent patient issue to divert my
attention. The supervisor of the student, to her credit, never mentioned it to me.
However, this incident signiﬁcantly detracted ﬁ'om the trust between me and the student’s
supervisor. Later, I was able to formally interview this therapist, and we were able to
mend our relationship.

For these very reasons, I had initially been reluctant to do my research at the same
facility where I worked. Circumstances were not conducive, however. I learned that the
anthropologist should constantly be aware of the effect he or she may have on the
informants and their relationships. It also highlights the pitfalls of having multiple roles
in one setting. I was able to act on information which I gained as a worker in this
department to pinpoint key informants. Perhaps it was poor judgment on my part to
interview this student, but I did ﬁnd out some interesting contrasts between the supervisor
and the student. Monique was from a low income family in an urban area in which she
rarely had encountered white people, and her college environment was no different. Her
obvious discomfort during the ﬁrst few weeks in the facility may have been in part
explained by her attempts to become familiar with unknowns in the environment, coupled
with the fact that she was not an exemplary student. Her supervisor, Jean, had in contrast
grown up in a middle class white neighborhood, and had been rated near the top of her
class. Jean’s conﬁdence as a therapist was at times intimidating to those with less
experience and knowledge. These factors, along with a general personality clash was
enough to complicate and lengthen Monique’s affiliation (she was required to spend 2

weeks beyond the standard 12 week rotation in order to pass). According to the

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technicians, Monique’s experience was strikingly similar to that of the only other African
American student in the OT departnrent a few years before Monique. According to the
supervisor, neither student had been very academically impressive. These conﬂicts added
validity to my thoughts about noncompliance (or other types of disagreements) being a
flmction of the relationship between people. When staff members have rigid ideas about
the “ideal patient” or the “ideal student,” these ideals often reﬂect the ideology of the

white middle class staff.

“A.J.”

During my ﬁeldwork within the hospital and surrounding community, I struggled
with the concept of racism, and how racism is reproduced in this society. The conﬂicts
waged in the media tend to polarize the issues, making clear delineations between racists
and non-racists. Consciousness is implied in all interactions, with persons categorized
accordingly. Racism was equated by most of my informants with conscious and overt
negative behaviors toward pe0ple of another race. Many Aﬁican American patients did
not feel that they had experienced racism in the hospital setting, and most whites did not
feel that they were racist. The following is an example of an Aﬁican American patient
who felt he knew racism when he saw it, and felt very positive about his hospitalization
experience. When asked, most informants deﬁned racism as overt acts or covert attitudes
people harbored against those of another race or ethnicity. Very few informants
articulated an awareness of institutionalized racism or social trends as forms of control.

A.J. Porter was a quiet, digniﬁed, and articulate man of 55 years who lived in a

small nearby town. He was an inpatient in the rehabilitation unit for a week after surgery

126

to stabilize the stenosis in his cervical spine. 1 had gotten to know him as I had treated
him in the occupational therapy clinic. He had difficulty with sensation in his hands, as
well as some motor function, causing him to lose dexterity in both hands. At the time he
was reporting his neurological difficulties, the doctors found a spot on his lung (he was a
heavy smoker for many years), and he had set a date for a month in the future for
exploratory surgery. I was fascinated by Mr. Porter and his wife, as they displayed a
certain air of control, as if every request made by a therapist or nurse was being weighed
brieﬂy in their minds, then acted on only if it ﬁt with the Porters’ ideas of what was
appropriate and helpful activity. This was decidedly different from the other Aﬁican
American patients whom I had observed in this setting. I did sense a banier that I have
sensed in other urbanites (the Porters were originally ﬁ'om Chicago), especially in African
Americans from the cities. They had a rather stony-faced exterior, and l was unsure if
they would even speak to me when I asked them for an interview. After asking them if I
could visit them in their home after Mr. Porter was discharged, they took a few minutes to
ask how the information would be used and for what purpose, then agreed on the date and
time. I called them the day of the interview for directions, and Mr. Porter was happy to
oblige.

I traveled to Bells, a town located 20 miles from Jackson, and commenced with
following the directions given to me by A.J. Porter. It was a dreary November day, with
mud and clouds coloring the leaﬂess landscape. As I drove through the streets of Bells, 1
came to an area in which the houses were more dilapidated, with obvious poverty as the
marker of the neighborhood. I became lost in the confusion of short alleys which

someone had named and called streets, 50 I found a gas station and phoned A.J. After

127

speaking to both him and his wife, I drove a few more blocks and found the street on
which the Porters lived. I approached their single-wide trailer and pulled into the muddy
tracks making up the driveway, hoping that the rains had not created a permanent parking
place for my car. I walked up the make-shift plywood ramp which had been considerably
warped by the moisture of the past few weeks. The Porters apparently had added this
ramp just before A.J. had come home from the hospital. He still used a wheelchair, but
was beginning to walk with assistance.

I was concerned that the Porters might not be terribly enthusiastic about sharing
intimate details of their lives with a near stranger. I became conscious of my middle-class
white professional status, and wondered whether the trip to Bells would be worthwhile.
They welcomed me warmly, however, and I realized they must have been assessing me
and my motivations. I ﬁnd that this is a conunon occurrence among urban dwellers as
opposed to the ﬁiendly and outgoing (if superﬁcial) demeanor of small-town Southerners.
The initial lack of eye contact and hesitance to engage in interactions did not necessarily
indicate stone hearts, only a stony countenance as a ﬁrst defense against whatever the
world might throw at them. Mr. Porter and I settled down in his scantily furnished living
room, while his wife made sweet potato pies for the upcoming Thanksgiving holiday.

A.J. was born in Mississippi, but his family (seven brothers and sisters) soon
moved to Indiana, as his father was a poor farmer and had heard of work in the north.
When A.J. reached adulthood and sought work, he eventually settled in Chicago, where
he met his future wife. Louise was originally ﬁom Tennessee, and three years ago they
decided to “get away from the rat race and the crime” and moved back to Tennessee. He

was not terribly forthcoming in his social history, and I suspect that the area of Chicago in

128

which they lived must have been poor also. Mr. Porter was on sick leave ﬁom his
assembly line job at a local metal parts manufacturer. He felt very positive about the
company, and found the insurance case manager to be very helpful. I found this
perspective to be interesting and very unusual, as this company was known to be one of
the most difficult employers in the area. The reputation was that of a hard-nosed and
demanding management staff who used people in very difficult jobs, then “let them go”
when the inevitable injuries occurred.

Mr. Porter felt very positive about his experience at the hospital, and in the rehab
center. He had no complaints, and was not shocked or surprised by any aspect of care as
had been expressed by most patients in the rehabilitation unit, as he had multiple injuries
in a car wreck in 1989 and was in traction for 90 days. He had some physical therapy
after that period. When asked speciﬁcally about any racial incidents or discrimination, he
said he had no problems. He was an articulate man who spoke precisely and with
measured words: “I have been in a lot of places, and I know discrimination when I see it.
I have seen plenty [of discrimination], but my hospital stay was free of any problems.” I
asked him about the difference between the north and the south regarding racism. “It
(racism) exists everywhere, but it is deﬁnitely more overt in the south. I know they hire
blacks for a lot less wages than whites. That’s why I’ll always be a union man, although
there are no unions to speak of in Jackson. When asked, he said he felt that unions would

eventually be prominent in Jackson, although it might take a while.7

 

7An incident of signiﬁcant violence surrounding the attempt to start a union at a
plant in Jackson several years ago makes unionization in Jackson even less likely. When
asked about unions, most natives of Jackson espoused very negative emotions about
unions, citing the incident in which one person was killed. Unions are categorized by

129

Mr. Porter stated that the industries were hiring illegal and legal Mexicans, and
paying them $2.00 an hour to do work that no American would do for that pay. He also
cited a company in Bells as mishandling it’s food waste (it is a frozen food company),
and that sometimes the whole town smelled like rotten food. “Why has this problem not
been protested, or brought to the attention of state or federal agencies?” I asked, knowing
well what the answer would be in a small, authority-abiding, Southern town. “Because
people just want to work and raise their families. They know that if they make trouble,
trouble just keeps coming their way.”

Mr. Porter was hopeful and optimistic in general about life, despite his run down
neighborhood and trailer. He worked hard in therapy, and I suspect he was a very good
worker in the plant. He completed high school, then mentioned that he had served in the
Army in 1965-67 as a draftee, and spent his overseas duty in Germany. He stated that he
really enjoyed Europe, and would very much like to go back some day. He had an
awareness about him that suggested that he had seen a lot of places and people and knew
that some places were better than others. I had the distinct feeling that no matter how
many questions I asked, and how smoothly 1 presented them within the context of our
conversation, that I would never be allowed to see the full depth of his life experiences.
He preferred not to discuss the negative aspects of his present and past.

Mr. Porter’s siblings live in Mississippi, California, and several other states. He

had an unexpected death in his family a few weeks before our interview--his older sister

 

native Jacksonians as “a Yankee kind of thing”, and not something to be sought after.

130

had died. This brought many of his siblings into the Southeast and he was glad for their
visits to him after the funeral. He felt it had really helped him.

Mr. Porter had excellent private insrnance, and had so far maintained a working
relationship with his employer, with plans of return to work if possible. He seemed
realistic about that. He did mention the worries about creditors calling (it sounded as if
they had been calling recently), but he was not overly anxious about it. He mentioned
that his faith in God was one of the main things which kept up his spirits, and which
helped him recover. He said his siblings, wife, and son were very helpful, and they all
prayed together, which seemed to him to be fulﬁlling and meaningﬁll. A.J. Porter and his
wife Louise, continued to deal with life’s difﬁculties with positive attitudes and religious
faith. Although they did recognize that bad things did happen, attitude was viewed as a
self-ﬁrlﬁlling prophecy. In A.J.’s words, when racism confronted him in the past, he said
“You have to forgive ‘em and forget ‘em. Having a bad attitude will get you nowhere but
down and out.” '

A.J. was closer to the “ideal patient” than other informants noted here according
to staff members who worked with him. He was articulate, compliant, and somewhat
passive during daily therapy. He worked hard, and expressed no unhappiness or
disagreement with treatment methods, and generally presented with a cooperative
attitude. A.J.’s success at getting the most out of the rehabilitation experience may have
been due in part to his recognition that the best way to gain what he needed was to give
over active decision making power to the “authorities,” keeping opinions to himself.
Some patients and staff were more likely to resist the erasure of agency, as the following

case demonstrates.

131
“Toni”

Toni Proctor was in many ways a complete contrast to A.J.’s quiet and
unassuming demeanor. Toni, an African American aide ﬁom Memphis, had been a
technician in the rehabilitation unit for many years, and had been a nurse’s aide before
that. She was also unlike most J acksonians in her outspokenness and willingness to
conﬁont and point out problems. She was described to me by one patient as “that big
sassy woman.” She was my only informant who willingly admitted that racism, both
overt and covert, was alive and well within the hospital. “How many black therapists do
we have in this department? None!! How many have we ever had? None!! We have
had thirty therapists in this department since it started in the late 19803, and no black
professional level employees. We have had a total of 2 black students, and neither of
them has been treated equal to the white students. The one we have now is not passing,
and the one we had a few years ago also didn’t pass without a lot of extra time and wor .”

Toni was a 43—year—old single mom with 3 kids at home, and a daughter and
grandchild who lived nearby. I visited her home one day for an interview which she
willingly granted, and I drove into an all—black neighborhood in what was referred to as
“East Jackson” consisting of single family rental dwellings and duplexes. As was
common in lower income neighborhoods, the landlords had not taken pains to keep up
maintenance on the houses. Toni’s children were at school or work, so we were able to
talk ﬁeely that aﬁemoon. Toni grew up in a low income area of Memphis. “I ain’t no
country girl. I grew up in the city, with pavement under my feet. I went to visit a cousin

on a farm once, and when I found out that what was bein’ served on the table had recently

been out in the ﬁeld, I couldn’t eat nothin’. I am deﬁnitely not country-raised.”

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Toni spoke of how young and inexperienced therapists tended to “lord it over us
techs”, assuming that her knowledge level about patient care was poor and uninformed.
Most of the technicians in the rehabilitation unit were African American. Toni described
how she was expected to act as a therapist at times when stafﬁng was low and patient
census was high, and how she chose patient treatment activities based on her experience
and knowledge of each patient. When therapists were late for a particular patient’s
treatment session, she hated to see a patient just wait, so she would often choose
something to get started on. Some therapists appreciated this effort, but many did not,
confronting Toni or reporting to her supervisor that Toni was usurping the role of the
primary therapist with no professional training ﬁ'om which to choose activities. Toni and
the other technicians had stopped initiating anything after having been reprimanded every
time a new therapist came on board. Many of the therapists in the rehab unit viewed the
techs as “lazy”, as they frequently saw them sitting and talking when patients were
waiting for their therapist to arrive. Toni felt caught and confused, ﬁghting the authority
of the professional level staff but knowing it was a battle that could not be won. Without
professional credentials, Toni was not at liberty to make treatment decisions, although at
times she was implicitly expected to do so when therapists were absent. There was not so
much a misunderstanding of roles, but a disagreement as to whether the roles of therapist
and aide being set were appropriate and consistent. Toni felt that these role delineations
were erased when it was convenient for the system and for the therapists, but not when it
was initiated by the technician. “This is how we’re kept in our place. I don’t really have

an interest in being on committees or anything [as we are expected to do], because

133

anything I say doesn’t count anyway. It’s always been this way. I was here before these
new therapists were, and I will be here a long time aﬁer they’re gone.”

Despite her frustration with the system, Toni worked constantly at trying to better
her situation. She continues to go to night school at a local community college to obtain
more professional standing, and better pay. She continues to express ideas and opinions
in staff meetings, even if they fall on deaf ears.

Toni described how the all-white professional staff sometimes misinterpreted or
disregarded African Americans. “I think white therapists are afraid of working with black
patients. They are scared of ﬁxing their hair. I saw Mrs. Smith being wheeled into the
clinic by her therapist aﬁer they had supposedly spent the morning doing self-care
activities. Mrs. Smith’s nappy hair was sticking straight up! Ain’t no comb had touched
that hair! Why couldn’t the therapist have just combed it? It don’t bite! It ain’t difficult
to just comb some hair. But white therapists, especially the young, new ones, are afraid
of black folks’ hair. Sometimes you can tell that the therapists are just ignorant of some
things. They don’t really know what it’s like to go without, to not have money, so they
recommend this piece of equipment, or that home program, not knowing what the home
situation is, or how desperate it may be. It is like pulling teeth to get special adaptive
equipment for these families that haven’t got the money. Just so they can get their
Momma in the tub once a week.”

Toni appeared tired, bored, and frustrated with her status as a technician, but she
knew change was slow in coming. “One of these days, maybe I will have my degree, and
I will be able to do something with my ideas. I would really like to advance.” Toni’s

vantage point was one of crossing the line between the professional staff and the patients.

134

She had not been indoctrinated as had the professional staff to believe in particular
treatment techniques or in maintaining professionalism in the patient-staff relationship.
This allowed her the freedom to be blunt with patients or staff in a way that would be
discouraged in professional training. She described situations in which some patients just
needed to be cajoled into participating for their own good, or in which she lectured to
some rebellious young patient who just needed a “good tongue lashing”. Tongue lashing
was a special skill of Toni’s, one which will hopefully continue to spice up the lives of
patients and coworkers.

At the time of publication of this document, Toni had found herself looking for a
job. Her position had been terminated, and aﬁer 17 years as a hospital employee, and a
less than stellar employee evaluation due to her “verbal disagreements and refusal to
follow protocols,” Toni was offered a position in the laundry service, or as a nursing
assistant. She felt strongly that these positions were far below her abilities, but she had
little choice as a single mother with only a high school diploma. Toni had been an easy
target, with her educational vulnerabilities and her blunt nature. These ultimately resulted

in further loss of power and position.

Brief Glimpses

Patients’ awareness of race as an issue during their hospital stays waxed and
waned, but the staff members who had been there the longest recognized a pattern. This
pattern, which can be found at most institutions in the US, was echoed in some entries

from my ﬁeld notes, i.e. the lack of awareness whites have of African Americans and vice

VCI’SﬂZ

135

One day I was sitting at the cafeteria at work eating lunch alone, when I looked up
and took note of my surroundings. All employees were grouped according to race
and station. I saw no mixed groups, and no professional level black employees. I
know we have a few, so where are they? How do they feel about mealtimes and
with whom do they eat? I remember wondering what our student did when she
was the only black person of professional level around—I learned that she
eventually just went out of the building everyday for lunch. It seems she may
have been penalized or ostracized for hanging out with the black techs.

Another day I was sitting at a nurses station writing in a chart, when a patient’s
call bell rang and rang and rang. I was faced with the daily dilemmaudo I try to
respond, and use up all of the only paperwork time I have today, or do I try to ask
one of the grumpy, overworked RN 5 to assist? I decided to continue on with my
paperwork, knowing that a tech was supposed to be responding. Five minutes
later, the tech did come up to the nurses station, looking a little harried from her
last patient, and mumbling to herself “Don’t everybody get up at once.” She was
black (as are all but one of the techs at this station), and all of the professional
staff sitting around was white. Hmmmm .....

I was at the Kroger grocery store today waiting in the checkout line while the
cashier rang up my groceries. The sacker was a middle-aged black man who
seemed to know the business very well, as he was dismayed at how the cashier
was passing the groceries down to him. He tried to get her to modify her method
but to no avail. So he just kept sacking while he sang “Yes Lord” many times
under his breath, shaking his head many times. It was as if to say, “ this child is
not doin’ this job right, and I cain’t stand it.” The cashier was a young black
woman. I rather doubt that he would have given any instruction to a young white
woman-African Americans still tend to defer to whites in social and work
situations that I have observed. It was a strange experience to stand here in the
grocery store in a small Southern town and hear a proud middle-aged black man
sing “Yes Lord” as he packed my broccoli. I was thinking this must have
happened so many times before in so many different ways.

I observed an argument today between an Aﬁican American student and a white

student. The disagreement began as the white woman, Jan, resisted the hairstyle

recommendations of her friend, Sue, an Aﬁican American woman and fellow

student.

Sue: “You need to get the split ends cut off your hair.”

Jan: “It took me forever to get it this long. I don’t ever want to cut it.”

Sue: “It would make it look better. You have such a pretty color [dark blonde] of
hair. And those ends just make it look raggedy.”

Jan: “I really wish I had black hair like you.”

Sue: “My hair is not black. I have sand colored hair.” Sue’s hair is brown with

golden highlights.
Jan: “I have never seen any sand that color. Your hair is way darker than that.”

136
Sue: “My hair is not black, though. Look.” She shows her hair more closely to
Jan. “I have nieces with black hair and I wish my hair was that color. But
it’s just this dirty brown.”

In the latter example, Jan was acting on a stereotype (that all black people have
black hair, or hair of the same color), while Sue resisted this assumption. This was one of
the few honest and open interactions in which the agents exchanged concepts in a positive
manner, and came away with a new understanding of each other.

The pattern noted here is this: that groups of people who lead separate existences
have a lack of knowledge of each other, and they make assumptions about each other.
Overt and covert racism and prejudice are still prominent, and can be seen in many daily
interactions throughout the community of Jackson. Although the patients may not see the
differences during their single one admission to the rehabilitation unit, the staff members
at the bottom of the power pyramid who have been there for a long time see the patterns.
Institutionalized racism may not be an intentioned effect, but it is real and present in the

structure of the system. The labeling of patients as “noncompliant” is one way that lack

of knowledge and institutionalized racism is expressed.

Policy and Race

Covert institutionalized racism inﬁltrates daily policy formation within a hospital
through subconscious or unconscious means. A common policy I have encountered in 5
different hospital systems is that concerning absenteeism from scheduled outpatient
therapy. The general policy is that if a patient misses 3 scheduled appointments, he or she
may be discharged for noncompliance. Most therapists and supervisors believed this to

be a very reasonable policy which would not affect most patients. Upon closer

137

examination and when viewed in the context of econorrrics and ideology, Aﬁican
Americans are proportionately penalized by this policy. As established in Chapter 4 on
the history of Jackson, the average economic level of the African American household is
signiﬁcantly lower than the average for white households. The low-income African
Americans in “East Jackson” were so tmderserved that the hospital system built and
ﬁnancially supported a farme medicine clinic in the vicinity where it was needed most.
This allowed the nearby community to alleviate some of the transportation problems
inherent in getting low income patients across town for medical care.

Physical and occupational therapy was not provided by this clinic, however, and
patients still had to travel farther to receive such services. The consistency of attendance
was directly linked to the patient’s ability to have a network of people who were available
to drive and who had a working car on the day of the appointment. If no such
transportation could be located, coupled with occasional lack of phone service due to lack
of funds to pay the phone bill, communication with and attendance at the therapy clinic ‘
became problematic at best. 1 tended to change the policy as needed for those who did
not have their own transportation: I saw them when they came, and I did not see them
when they were not there. They were pleased to be seen and were not frustrated by
having to wait until I could ﬁt them in. I had both white and African American patients
who fell into this category, but it was clear that African Americans were overrepresented
in the lower socioeconomic classes, as established in earlier chapters. Most therapists
were not tolerant of this scheduling ﬂexibility, as informed by the commoditization of

time within Western biomedicine.

138

The discussion of time becomes more closely linked to this project when
considering the discussion I had with a white woman in her ﬁfties. We were discussing
how racism is more covert, and she began relating sayings which were common
knowledge a few decades ago. The phrase “CP time”, or colored people’s time, was
frequently used among whites to describe African Americans’ use or attention to time.
“Whenever a black person was late for something, we would always say they were on ‘CP
time,’ and we all knew what each other meant: that Negroes did not pay attention to
appointment times, or did not seem to be concerned if they were late.” This negative
perception of some whites regarding African Americans’ use of time may continue to
inﬂuence policies through more unconscious channels.

Another policy implication is that of nepotism, or what I call the pseudo-nepotism
of the good ol’ boy network which was so prevalent in the hospital system. This
particular hospital system was especially resistant to the ideology of written records in
policy development. The other hospital systems in which I had worked were steeped in
written policies and standards of practice, while the Jackson facility had relatively few
written policies and standards. The oral tradition was quite prevalent in this cultural
region, and the literacy rate was poor compared to most states as established in Chapter 4.
This would seem to have inﬂuenced the learning of hospital standards by word of mouth.
I discovered another possible reason for the resistance of putting policies in written form:
it would set a standard which would need to be followed, and this would seriously
undercut the ability of the staff to trade political favors in order to accomplish a desired
end. The case of a student becoming an administrator is an excellent example of

nepotism and pseudo-nepotism at work.

139

A student asked to be placed in my department ﬂour a remotely located university,
as he had family who lived within an hour of Jackson. Before I learned of this student, I
was told by an administrator that I needed to hire Jim Smith. I told the administrator that
I had not heard of a Jim Smith, but that I would be glad to consider him along with other
candidates. Later when Jim was introduced to staff members, he made it known that his
brother was a physician, and that he was personally acquainted with the chief executive
officer of the hospital. This white student had no signiﬁcant or lengthy work history. By
the time he ﬁnished his internship, he had met with the CEO on several occasions, had
offered his own clinical supervisor a job working for him, and had an agreement that he
would be a manager of a new service in the town in which his brother worked as a
physician (this job had formerly been promised to a woman who had worked in the
hospital system for several years). By being a brother of a physician and being acquainted
with the CEO, this student’s Opportunities were far greater than .most students or long
term employees. If a written policy existed which prevented hiring employees based on
nepotism or pseudo-nepotism alone, then other qualiﬁed candidates might have had a
chance; those who were not in the loop of personal acquaintance with key players were
not considered. By the same process, African Americans and women often had fewer
opportunities to advance in the hospital system, as their connections with the decision
makers was oﬁen tenuous at best.

Patient choices were not the only facet of hospital life shaped by education, class,
and culture. Employment in the system was also greatly affected by these structures.
Approximately eighty-ﬁve percent of the Aﬁican Americans employed within the

hospital system were employed in environmental and food services. Only ten percent of

140

professional or administrative jobs were held by African Americans, although Aﬁican
Americans made up forty percent of the population in Jackson. Trudy Smith was an
African American nursing technician in her ﬁfties employed in the rehabilitation unit.
When asked why she thought that so many black people were hired'into low end jobs in
environmental services, and so few in some other departments, she had this to say, “I
reckon folks are just used to hiring blacks in domestic jobs. Around here they are just
used to being waited on by black people.” John Watson, a younger African American
technician, commented on the process of being hired, ‘you just got to know somebody to
get in. And sometimes they just don’t want to hire blacks.” John also expressed
frustration that his opinions about patient care were not taken into account, due to his
non-professional status in the rehabilitation unit. He stated that he and the other
technicians actually spent more time with the patients, yet the nurses and therapists often
did not consult him regarding patient behaviors or suggestions which he felt would work
more effectively.

These life histories and notable interactions exemplify how a system reproduces
itself, and how this reproduction reﬂects the ideology of those in power. Georgia was a
patient who was not accomplishing her therapist-generated goals quickly enough to meet
the standard which the system had set, and she was unwilling to give up her power to
decide when and how much she should walk. Josephine used her knowledge of the
therapy world to smooth her own transition to home and daily activities. Trudy and John
recognized the pattern of reproducing the status quo in practices of hiring more African
Americans into “domestic” jobs. Grace fought against racial stereotypes among some

staff members, and resisted the domination of the institution’s schedule over her own

14]

needs. Monique became more conscious of racial issues during her tenure at the
institution, but was unable to articulate possible links with her own situation. A.J. ﬁt the
institution’s ideal of the cooperative, quiet patient, and he beneﬁtted from this positive
regard among the staff. Toni continued to struggle against the patterns she recognized as
institutional racism, but was frustrated with her lack of power to effect a change.
Institutional policies, whether official or unofﬁcial, continued the reproduction of the

system in its own image.

Noncompliance

Noncompliance is a phenomenon which is situated within the context of patient-
staff relations, the power structure of the institution, and the political economy of the
health care ﬁeld. Most cases in which noncompliance was reported in this study involved
major ethnic, class, cultural, or educational differences between the patient and the staff
member reporting the problem. These differences were largely unnoticed by most staff
members, or were framed in terms of “value” or “moral” differences. Those patients or
staff judged to have lesser morals or values were more often African Americans of low
socioeconomic standing, continuing the cycle of institutional reproduction, and

maintaining the power of the white middle class.

CHAPTER 8
DISCUSSION AND CONCLUSION

Noncompliance is not a simple phenomenon which befalls certain uncooperative
patients, nor is it an "irrationally motivated" nonadherence, as suggested by the American
Psychiatric Association (Meichenbaum and Turk, 1987). “Noncompliance” as a
legitimate term should therefore be limited to those few cases in which purposeful and
dishonest manipulation take place. In the inpatient rehabilitation unit, this type of
behavior is so rare (in comparison to its occurence in other types of settings, such as
outpatient treatment of Worker’s Compensation cases) that I cannot actually say that l
have seen it among the thousands of patients with whom I have worked. More often, it is
a ﬁmction of the relationship between patient and staff who differ in ideology,
explanatory models, education, class, or ethnicity, or a combination of the above factors.
This lack of agreement between patients and staff can be a result of resistance in action,
depression, or disagreement with a system which has become increasingly standardized
for some ideal patient in a fantasy world. It may also be a lack of knowledge of the
system on the part of the patient and therefore of the types and timing of choices that can
be made more easily. The grief which people experience during the initial phase of
disability often goes unrecognized or at least unaddressed as a legitimate factor in
rehabilitation, and can lead staff members to assume inappropriate conclusions about a

patient’s motivations.

142

143

In a recent television documentary, a young woman sat talking about adjustment
to her disability (both her legs had been amputated above the knee due to severe injuries
sustained when she was hit by a speeding van one evening). She talked of how shocking
it was to look in the mirror and see her stumps, or to just sit and contemplate the fact that
she would never again be able to thoughtlessly get up ﬁom a chair and stride across the
ﬂoor. She lamented the loss of habit and routine, of unconscious movement and body
ritual that walking with her own legs had given her, and that she had not been aware of
until it was suddenly taken away. These losses are so rarely brought into the open and
verbally expressed by people with new disabilities that I felt it pertinent to comment on
this young woman. Most people going through physical rehabilitation express this loss in
other waysuthrough anger, denial, resistance to therapy, and depression, as with the
patient, J irn Roche].

Jim was an active white man of 56 years when a severe stroke left him with one
side of his body paralyzed, and unable to walk or use his left arm. His occupational
therapist asked Jim what he would like to be able to accomplish through therapy. With
an incredulous look on his face, J irn answered angrily, “Well, I want to walk and use my
arm, of course!”

“What activities or tasks would you then be able to do that you can’t do now?”
asked the therapist, attempting to get more speciﬁc goals for which “objective” progress
could be measured.

“1 would live, instead of rotting in this wheelchair, instead of rotting in this
hospital bed. I don’t want to go to a nursing home-they just leave you there to starve and

die!” Jim’s recovery was punctuated by angry interchanges with therapists and nurses

144

who wanted Jim to continue to do more for himself. Jim resisted attempts to learn new
methods of accomplishing his tasks, which would have allowed him to go home sooner in
the care of his wife.

When I interviewed Jim in his home three weeks after his discharge from the
rehabilitation center, he was bitter about some of his experiences there. “One of the
worst things was not being able to decide anything for myself. If they wanted me to get
up at 5:30 am to get weighed, that’s what I had to do. I just wished they would have
listened once in a while, instead of telling me what to do constantly.” When speaking

with Jim’s therapists and nurses, most expressed frustration at J irn: “J irn was so abrasive

7" II -1

 

‘ .

that he was hard to be near,” or “He was so noncompliant with everything I suggested. I
don’t think he really wanted to get better.” One therapist managed to create a working
rapport with Jim, and at least understood that his personal history had everything to do
with his behaVior in the rehab center: “Jim had a horribly abusive background. He
described things that had been done to him as a child that no one should have to endure. .I
think J irn didn’t trust anyone, and was so afraid of losing what little control he had of his
life, and aﬁ'aid that his wife would leave him, that he was sabotaging efforts to help him
get back to a semblance of normalcy.” My interpretation was that Jim was expressing his
loss of control, and loss of familiarity of bodily ritual. Most of Jim’s rehab team
members were rmable to recognize or uninterested in pursuing Jim’s reasons for his
“noncompliant” behavior. With little enough time in the day to care for 6 or 7 more
patients dealing with disabilities that were just as severe as his, most staff members
avoided interacting with Jim, and were relieved to see him leave. The therapist who had

been able to develop a rapport with Jim received a poor evaluation for “spending too

145
much time talking with patients and staff, and being continually behind on
documentation.” Perhaps if more tolerance of emotional repercussions of disability had
been built into the system of rehabilitation, and more therapists were rewarded rather than
penalized for spending time with patients, the rehabilitation experience would have been
more successful for J irn. The pressures against J irn were largely economic pressures
(decreased time available for staff to spend listening to patients, and rigid rules about
reimbursement based on accomplishing certain “essential tasks” in the shortest length of

stay possible). Other pressures include the emphasis on the purely physical, and less

I...“

emphasis given to the psychological and emotional factors faced by patients negotiating a

 

life-changing illness or injury.

Many people have difficulty adjusting to having paralyzed limbs, and not being
able to feel it or move it as in the past. One woman with whom I worked in a rehab
center, Moira Elswood, was an active person in her sixties when she was paralyzed ﬁom
the chest down in a freak tram accident. We were working towards being able to use
adaptive equipment to hold a spoon in her hand so that she could eat independently. We
had spent many sessions, and “Moira” had difficulty conceptualizing that there were
alternative ways of accomplishing daily tasks. “I can’t move my ﬁngers. How do you
expect me to be able to feed myself?” She had ﬁnally had the “Aha!” experience when
she had been able to fork a piece of bread and get it to her mouth using the universal cuff
device. My student and I were thrilled along with her at this triumph, and we hoped she
would begin to accept and understand that life could approach normalcy in some ways,
and that all was not lost. Her mood had been considerably brighter that day, until she had

smprise visitors—old friends with whom she socialized weekly before her accident. Her

146

friends were obviously shocked at the sight of so many people in wheelchairs and seemed
apprehensive about visiting Moira. Moira’s mood immediately sobered, and her ﬁrst
statement to her ﬁiends was “Look, Madge, I am paralyzed. I can’t move anything!” as
she waved her immovable ﬁngers in the air.

I felt Moira had suffered a setback in her adjustment and that we needed to
provide more successes in therapy in order to help her acknowledge that she was able to
do some daily tasks independently. Moira struggled through therapy and apprehensively ;
returned to her lakeside condo (which had been modiﬁed slightly for her electric :

wheelchair) with the help of home attendants and a supportive man whom she had been

 

‘E-

dating. I learned two weeks later that Moira had decided she could not live independently
and had admitted herself to a local nursing home.

I often think of Moira and her struggle with her own disability. I have come to the
conclusion that Moira did not have difficulty understanding thepossibilities so much as
she could not get past her loss of bodily control and function in the allotted 12 weeks of
rehab immediately after her accident. If rehabilitation could have taken a slower pace for
Moira, giving her time each day to emotionally process the days accomplishments and
failures with trained staff and family members, perhaps she could have more successfully
entered independent community life, and found meaning once again.

How does economic status inﬂuence self-identity? Not only does income level
directly shape choices in services and material goods, but class values have a tremendous
effect on how a newly disabled person views the future. Joe Sonoco was a young black
man with a high school education who had been trying to extricate himself from drug

dealing in his neighborhood. One night he was stabbed in the back at a party over a drug-

147

related conﬂict, with permanent paralysis from the Waist down being the result. His
options upon discharge ﬁ-om rehabilitation were to live in transitional housing (Section 8
Federal Housing for those without income or home) or to move in with his brother and
his family in a small, wheelchair-inaccessible house (his girlfriend with whom he had
lived had left him while he was hospitalized). His concept of himself as someone who

had been working at making himself better was shattered, mirrored by the expression on

 

his face as we watched the roaches crawl across the ﬂoor on an outing to visit transitional I?

housing.
J oe's story is completely different ﬁom John Pillsbury, who had experienced a

similar injury from a cycling accident. John had a doctoral degree in public health and iv

was a top executive in the state health department. His girlﬁiend, who became engaged
to him during rehabilitation, came to visit him every day to learn his exercise program
and daily routine. My most memorable outing with him was a trip to the state health
department building to evaluate it for wheelchair accessibility. John was able to place
orders for all new office and conference room furniture to allow for wheelchairs, as well
as having the bathrooms and water fountains rebuilt for easier access. Automatic doors
were also installed at the building entrances. While J ohn's future was certainly affected
by his paraplegia, his personal narrative was much less interrupted than Joe's. John was
able to return to work, maintain his personal relationships, return to participation in
sports, and become an advocate in the state government for people with disabilities. His
educational backgrormd and personal power also helped him to obtain an accessible

apartment at no extra expense. His ontological security was quickly re-established.

148
Noncompliance: Fault Line Over Deep Rumblings

This project has supported the concept of noncompliance as a function of the
relationship between patient and health care professional: the embodiment and
expression of resistance, grief, depression, action, and power. The relationship in which
this fundamental lack of communication and comprehension exists is complicated by lack
of time, trust, and attention to the heart of the issue. The ability to live a fulﬁlling and
meaningful life is at stake. The same could be said about the relationship between the
races: the rhetoric of blame surrounding “the noncompliant” is suspiciously similar to the
current explanations of racial inequities in this society. Statements such as “They just
don’t want to improve themselves” or “they are lacking in personal responsibility” are
easy ways of framing a world in which the speaker sheds the necessity for effort to make
things better.

This project has contributed to the anthropological literature by operationalizing
how institutionalized racism and continuing economic pressures in the health care sector
directly effect patient care. The study also establishes the continued importance of
personal, community, and political history as the foundation of current trends in social
and political life. Without understanding the ideological implications of a current “level
playing ﬁeld” as a denial of history and habitus, we will not be able to respond to those
who would continue the reproduction of institutionalized racism, whether intentional or
unintentional. Although the discourse has changed from overt racism to learned
helplessness or ﬁscal irresponsibility, the discourse and official knowledge continue to

conceal the nondiscursive intentions of socially constructed ethnic identity.

 

149

In Chapter One, I introduce the reader to the major concepts of noncompliance,
race, and disability. Chapter Two reviews the literature, including a discussion of
disability and identity, informed by anthropological theory of praxis. Chapter Three
outlines and explains my methods in this study. In Chapter Four, I developed an
historical perspective on race, with evidence to show that racism persists, although it may
have changed forms in the past thirty years. As racist statements and behavior have
become socially unacceptable, a new classist tendency has renewed the separation of
races, veiling the inequities of the races in more appealing concepts of “economic
instability” or “ﬁscal irresponsibility.” Differing deﬁnitions of racism abound, with many
white people being totally unaware of the privilege that whiteness brings.

Ultimately, race is one path institutions take to limiting access to economical and
political power. As discussed in Chapter Four, from the beginning of the European
colonization of this land to the present day institutional reproduction of culture and power
relations, race has been used as a way to support one ideology over another, creating a
structure invisible to most individuals.

Chapter Five describes the structure of the rehabilitation unit, and begins the
presentation of ﬁndings of this project. At times, the examples in this study show that
race was not a conscious issue with many patients or staff, but the habitus was a silent
and ever-present shadow brought to occasional consciousness by a racist statement or
action, or by the recognition of the reproduction of the institution. Toni and the other
technicians had a unique vantage point: partly in the professional world of health care
workers, and partly in the patients’ world, blurring the lines between subject and object,

and professional and patient. In Chapter Six, I revisit the theoretical foundation of

 

150

embodiment, political economy, and power, and how these concepts are exempliﬁed in
my ﬁndings. Chapter Seven ﬁmher develops my ﬁndings and relates them to
institutional policy and reproduction. The concluding chapter redeﬁnes noncompliance,
and calls for a recognition of the complexity of rehabilitation as it relates to access,
agency, and resistance in medical institutions.

The events and interactions recorded and analyzed in this document focus the
anthropological lenson the physical rehabilitation unit as a microcosm of society in
which the elements of change, loss, and conﬂict are forced upon people in a constriction
of space and time. This country has successfully built an underclass in which Aﬁican
Americans are overrepresented, as reﬂected in access to goods and services, and in the
perceived noncompliance of patients in a physical rehabilitation unit. The physical
rehabilitation unit is a space ﬁlled with struggles for ontological security, personal
empowerment, and a meaningful life, in the context of sudden change and new
beginnings.

A clear responsibility exists within the ﬁeld which facilitated the beginning of
race rhetoric, and then was paramount in discovering the ﬂawed logic of a biologically
based racial deﬁnition. The rhetoric of “difference” which has been so liberally applied
to a variety of situations and events undercuts our abilities as humans to prosper as a
species. Anthropology as a discipline has the potential for analyzing the root of racism
and Classism, for explaining the perceived and actual differences between people, and for

suggesting changes which may improve the status of patients, families, and communities.

 

151

Anthropology has begun the task of taking on this responsibility', but we need to move
more quickly before other more damaging explanations take hold. Many in the scientiﬁc
community recognize that race is not a biological classiﬁcation system (although many
questions remain as to whether the medical community has embraced this idea), but
rather a social classiﬁcation system with very real consequences for those in each
category. Anthropologists now need to convince the public in the US. of this fact and
take a more active role in providing data to support this reality.

Jackson, and other towns like it, need more Shirlene Mercers--native Jacksonians,

or at least those who know how to best present information to other Jacksonians. They

 

'2' ljr :13

need to hear ﬁ'om more people who know both sides of the issue, and who care enough to
do something positive about it. Bright spots of hope exist in Jackson, with the advent of
Diversity Luncheons sponsored by the mayor, interdenominational and interracial church
activities, and the courting of minority businesses in the region. In an effort to improve
quality and availability of health care to all people, this project’s results will be shared
with the hospital, the community, and with rehabilitation professionals in a responsible
and constructive manner.

Anthropology can be a unique and powerful tool with which many aspects of
culture are analyzed and challenged, including the anthropologist's own lens upon the
world. It is my h0pe that this project will contribute’meaningful cultural interpretation of

the challenges presented to society in understanding race, and how the continual social

 

lSee W from 1997 to present for continued commentary

on the subject.

152

construction of race is reﬂected in the official and unofﬁcial knowledge acted upon

through institutional policies and structures.

 

GLOSSARY
ambulation: technical rehabilitation term for walking.

aphasia: partial or total loss of the ability to comprehend or recognize language; may or
may not affect the ability to write or recognize written language. Receptive
aphasia may result in the person’s lack of ability to understand language, but 3,
words are produced without difficulty (Wernicke’s aphasia). Expressive aphasia i,
does not effect the ability to understand, but only to produce language (Broca’s F
aphasia). 1.

bed mobility: the ability to roll, move, and get up and down from the bed. Assessed by
PT and OT. F

 

CVA: cerebrovascular accident, or stroke.

dysarthria: the loss of the function of the oral structures in speech production; language
comprehension is not affected.

femur: the long bone of the thigh
femoral artery: the major artery of the thigh

FIM: functional independence measurements; most commonly used nationwide system
for rating the patient’s ability to complete essential tasks including ambulation,
self care, swallowing, cognition, and social interaction. The rating scale is from 0
to 7, with 0 indicating unable to do any of this activity, to 7 indicating that the
patient is completely independent and needs no adaptive equipment or extra time
to complete the task.

hemiplegia: paralysis of one side of the body, as with a stroke or some brain injuries.

hypertension: high blood pressure.

multiple sclerosis: a chronic degenerative disease of the central nervous system in which
gradual destruction of myelin in patches throughout the brain and/or spinal cord
interferes with the nerve pathways and causes muscular weakness, loss of
coordination, and speech, cognitive, and visual disturbances.

MVA: motor vehicle accident.

153

154

neglect: medical term for the lack of the brain’s ability to process sensory input from one
side of the body (usually the left) as a result of brain insult. Not related to the
capabilities of the eyes or the sensory organs of skin and ears--these may function
perfectly, yet the patient is still unable to process information from these organs,
and is essentially blind and insensate on that side of the body. Patients are most
often unaware that they have a deﬁcit, as the brain tends to ﬁll in the “blind spot.”
This creates a special safety risk, as patients who have neglect run into walls
which they are unable to perceive, or they attempt to use a paralyzed limb and fall
frequently.

not-for-proﬁt hospital: hospital which utilizes any proﬁt to reinvest in the institution; for-
proﬁt institutions give proﬁt to the owners or investors. The hospital in this study
was a not-for—proﬁt institution, but has historically given a signiﬁcant portion of
its year—end proﬁts to the city and county (these gifts have ranged ﬁom $300,000
to $1,000,000).

nursing technician: non-professional level nursing assistant having on-the-j ob training, or
a CN A (certiﬁed nursing assistant) background; responsible for toileting patients,
dressing, feeding, and transportation to and from therapies; similar to orderlies in
some systems; referred to as a “tech.”

occupational therapy: a health related profession focusing on purposeful, meaningful, and
culturally-appropriate activities to improve independence or enhance role
performance in work, leisure, and self care tasks for people who have physical or
emotional dysfunction. A registered occupational therapist has at least a
bachelor’s degree in occupational therapy ﬁ'om an accredited college, and a
certiﬁed occupational therapy assistant has an associate’s degree, and both have
passed a national board exam to receive the designation “OTR” (occupational
therapist registered) or “COTA” (certiﬁed occupational therapy assistant).

OT: occupational therapist.

physiatrist: physician specializing in physical medicine, dealing with the treatment,
prevention, and diagnosis of disease by essentially physical means, including
manipulation and exercise.

physical therapy: a health related profession focusing on the physical parameters of
regaining function-strength, balance, coordination-through the application of
therapeutic exercise and modalities. A physical therapist has at least a bachelor’s
degree in physical therapy from an accredited college and passed a national board
exam to receive the designation “RPT” (registered physical therapist), and a
physical therapy assistant has an associate’s degree and has passed a state board
exam to receive the designation “PTA” (physical therapy assistant).

 

155

professional staff: clinical licensed staff members having at least a bachelor’s degree in
their discipline; registered nurses, occupational therapists, speech pathologists,
physical therapists, physicians.

PT: physical therapist.

public hospital: hospital which accepts all patients. Private hospitals reserve the right to
turn away patients who are indigent.

quadriplegic: a person who had sustained a spinal cord injury in the cervical spine;
usually results in at least partial paralysis of the upper limbs, and full paralysis
from the chest down.

SOAP note: standard documentation of patient progress for therapies; consisted of
subjective (patient’s statements or reports), objective (quantiﬁable or observable
ﬁndings of evaluation), assessment (the professional interpretation of the
subjective and objective), and plan (treatment plan and measurable goals).

speech language pathology: the study and treatment of speech and language disorders
especially through the use of exercises and audio-visual aids. Speech language
pathologists have at least a master’s degree from an accredited university, and has
passed a national board exam.

ST: speech therapist or speech language pathologist.

synergy pattern: pattern of movement which is characterized by decreased voluntary use
of smooth muscle contraction, involuntary movement of the ﬂexor muscles of the
upper extremity, and extensor muscles of the lower extremity; occurs as a result of
brain damage to the motor cortex.

therapeutic recreation: leisure activities used by a therapeutic recreation specialist in order
to improve a patient’s mobility, self care, emotional, social, or cognitive skills
toward improved quality of life. The therapeutic recreation specialist has a
bachelor’s degree in therapeutic recreation ﬁ'om an accredited college, and has
passed a national examination to receive the designation “TRS.”

therapy technician: non—professional level assistant having on-the-j ob training, or a CNA
(certiﬁed nursing assistant) background; responsible for transporting, toileting,
dressing, and feeding patients, and assisting the therapists and therapy assistants;
considered a step up from nursing technician as it requires more training and less
physical labor; referred to as a “tech.”

TR: therapeutic recreation.

 

156

transfers: transitional movements ﬁ'om one position to another, such as moving ﬁom bed
to wheelchair, or wheelchair to ﬂoor.

universal cuff: an elasticized or velcro-fastened band worn on the hand of a person who
has no active ﬁnger movement but has active wrist, elbow, and shoulder
movement; the band has a pocket attached within which can be placed a variety of
utensils.

 

APPENDICES

 

IL‘ -

APPENDIX A

 

APPENDIX A
Semi—Structured Interview Guide

The following questions were used as a basis for interviews and discussions with
patients or former patients and their family members. Interviews were 45 minutes to
three hours in length, with some patients being followed brieﬂy, others for several months
to a year, depending upon my access to them. Interviews were ﬂexible and semi-
structured, allowing the participants to say whatever they wanted, and to lead the
discussion with what they felt was important. When the information given was minimal,
more detailed follow-up questions were asked to help develop the topic. Straight-forward
questions about problems encountered were avoided in most cases, as most participants
declined to offer criticism or complaint in this manner. When the participant was allowed
to bring up conﬂicts without particular prompting, the information given was detailed and
genuine.
1. How old are you? Are you manied, single, divorced? Do you have children?

How many? Where are they?
2. Where is your family from? Where did you grow up? Tell me about your

childhood.
3. How much schooling have you completed?
4. Are you employed? If so, what kind of work do you do? If not, retired? From

what? Homemaker? Unemployed?

157

158

Where are your parents from?

What kind of work have they been involved in?

Has rehab been what you expected it to be? Tell me about your experiences here.
What is your typical day like? Tell me about occupational, physical, or speech
therapy. How did night-time differ from day-time in the rehab unit?

What surprises has rehab brought you? Was it what you expected? Had you ever
known anyone who went through rehab?

What is the most difficult part of going through rehabilitation? If you knew

someone who was about to begin rehabilitation, what would you tell them?

APPENDIX B

APPENDIX B

Biographical Proﬁles:
Alphabetical by Last Name

Bob Burkeen : 33-year-old single white man who was an occupational therapist ﬁom
Canada. He was from a middle income family. He ﬁ'equently spent extra time getting to
know his patients, and was often penalized for not getting his paperwork done.

Arthur Deaton : 48-year-old married African American man who had suffered a spinal
cord injury due to a poor surgical outcome. He spent 6 weeks in the rehabilitation unit,
then returned home to the care of his wife. He was unable to return to work in a local
manufacturing plant. He initially had private insurance, then switched to Medicare when
he was ofﬁcially retired from his job and rated for permanent disability. He was
considered compliant during his inpatient and outpatient therapy. He was from a middle
income family.

Moira Elswood: 72-year-old widowed white woman who was a retired homemaker. She
had sustained a spinal cord injury in a freak tram accident in the resort town where she
lived. She was paralyzed from the chest down with partial use of her arms and no active
ﬁnger movement. She spent 12 weeks in the rehabilitation center, then was discharged to
home with the use of an electric wheelchair, personal care attendants, and a good ﬁiend.
Soon after her discharge, I learned that she had admitted herself to a nursing home after
an especially difﬁcult weekend with unreliable personal attendants.

Jean Forbes: 25-year-old single white woman who was an occupational therapist in the
rehabilitation unit in Jackson. This was her ﬁrst job as an OT, and she was originally
from the Midwest. She was from a middle income family.

Sherrie Hampton: 23-year-old single white woman who was an occupational therapist in
the rehabilitation unit in Michigan. She was ﬁom an upper income family, and had been
raised in a suburb of a large Midwestern city.

Jackie Hatﬁeld: 49-year-old divorced white woman who was born and raised in the
Upper Midwest. She had worked the ﬁeld of occupational therapy for 4 years, and was
from a low income family.

Charlie Jones: 74-year—old married white man who was in rehab for deconditioning
following heart surgery (Michigan pilot study). He was originally from Michigan, and

159

 

160

had retired ﬁom automobile manufacturing. He was considered noncompliant, and was
in the rehabilitation turit for 10 days before discharging to a nursing home, as his wife
was unable to give him as much assistance as he would need. His insurance was
Medicare. He was from a middle income family.

Darryl Kincaid: 23-year-old single Aﬁican American man who was attending outpatient
therapy after paralysis due to a spinal cord injury acquired when he crashed a stolen truck.
Darryl had a sporadic work history, and was living with a girlﬁiend in an apartment that
was not accessible to his wheelchair. His family had declined ﬁrrther contact with him.
He attended outpatient therapy 2 times out of the 12 visits prescribed. I later learned that
Darryl was living in a nearby nursing home. At the time of his inpatient admission to the
rehabilitation ﬂoor, he was considered extremely noncompliant and stayed for 4 weeks.
He was from a low income family.

Ronald McGee: (Michigan pilot study) 76-year-old married Aﬁican American man who
was in the rehabilitation unit for 15 days after having a mild stroke. He was born and
raised in Mississippi and had been a farmer and handyman. He had moved to Michigan
looking for work in the 19605. He was considered mostly compliant, with the incident
about dressing as an exception. His insurance was Medicare. He was ﬁ'orn a low income
family.

Josephine McGregor: 48-year-old married white woman receiving physical therapy in
acute section of hospital. Josephine was a health care worker who had had knee surgery.
She is ﬁ'om the Northeastern United States, but has lived in the Southeastern US. for
twenty years. Before she became a health care worker 6 years prior to this event, she had
worked in a variety of industries and businesses. She was considered mostly compliant,
having an instance or two of noncompliance. She had private insurance, and she returned
to home within the week. She returned to work the following week. She was ﬁom a
middle income family.

Shirlene Mercer: A married African American woman in her ﬁfties, and a local activist.
At the time that my data was gathered, she was the Chairwoman of the Board at the
hospital. She was retired ﬁom teaching in the public schools, and was a political activist
for a local politician.

Georgia Nimke: 46-year-old divorced white woman ﬁom Ohio, was in the rehabilitation
unit after having surgery to remove a spinal cord tumor, then spending several months in
a nursing home. She had been a medical ofﬁce secretary in the past, but was unable to
return to work due to her level of disability. She discharged ﬁ'om the hospital after 27
days, and moved into her daughter’s home to help with the grandchild and to get what
assistance she needed. She still used the wheelchair about 50% of the time at the time of
her discharge. Her insurance coverage was Tenncare (Tennessee’s equivalent of
Medicaid), and she was considered to have signiﬁcant problems with compliance by her
therapists and muses. She was from a low income family.

161

A.J. and Louise Porter: 55-year-old Aﬁican American man and his 53-year-old wife,
entered rehabilitation unit after surgery to stabilize his spinal stenosis. Born in
Mississippi, then moved to Indiana as a child, eventually settling in Chicago where A.J.
met Louise. Louise was originally from the Jackson area. A.J. had private insurance, and
was regarded as a compliant patient. He was in the rehabilitation unit for 14 days, and
was interviewed in his home after his discharge ﬁ'om the hospital. A.J . was an assembly-
line worker in a local manufacturing plant. He was not able to return to work. A.J. was
well on his way to graduating from the wheelchair completely when I interviewed him.
He was from a low income family.

Toni Proctor: 43-year-old separated Aﬁican American woman originally from Memphis
who was employed as a therapy technician. She had worked as a nurse’s aid before
becoming a technician. She was from a low income family.

Jim Roche]: 56-year-old married white man who had lost his manufacturing job due to
his illness and subsequent disability. He had spent 3 weeks in the rehabilitation unit after
a stroke had caused paralysis in his left side, and had been home in the care of his wife for
3 weeks at the time I interviewed him. Jim used a wheelchair for mobility, and was
making slow gains in his ability to walk. He was considered to be noncompliant and
unpleasant in his interactions with staff. His insurance was Tenncare, and he was from a
low income family.

Maria Sanchez: (Michigan pilot study) 86-year-old widowed Hispanic woman originally
ﬁom Mexico, currently living with her daughter in Michigan. She was in rehabilitation
for 12 days after a fall at home and brief admission to a general medical ﬂoor in the
hospital. She had Medicare as her insurance, and was considered noncompliant. She
spoke only Spanish, and was provided with an interpreter on brief occasions. She
returned to her daughter’s home after her discharge. She was from a middle income
family.

Grace Simon, and daughter Roberta: 45-year-old married African American woman in
rehabilitation after a motor vehicle accident. Categorized as multiple trauma (fractured
leg, fractured arm, concussion/mild brain injury, internal injuries). She was born and
raised in Gary, Indiana, though her parents were from Alabama. Grace attended Lane
College in Jackson, and met her husband here. She was in the rehabilitation unit for 22
days. She was considered largely compliant, with occasional instances of resistance
noted by the nursing and therapy staff. Grace was a school teacher in the public schools.
She had private insurance, and was ﬁom a middle income family. She went home after
discharge with the help of some family members, then eventually returned to work as a
school teacher.

Trudy Smith: 5 5-year-old married African American woman who had worked for the
hospital for twenty-ﬁve years. She was born and raised in Jackson, and was from a low
income family.

 

162

Monique Stapleton: 22-year-old single Aﬁican American woman who was a student
intern at the hospital. She had a family member who lived in a nearby town, but she had
been raised in a metropolitan Midwestern city. She was ﬁom a low income family.

John Watson: 32-year-old single Aﬁican American man employed as a nursing
technician. He had transferred from the housekeeping department 2 years before this
interview. He was born and raised in Jackson, and was from a family with a low income.

 

reﬁ-

APPENDIX C

APPENDIX C
Sample SOAP Note

S: “I can’t move my arm.”

0: Patient is a 57 yr old black male, attended initial occupational therapy evaluation in
standard w/c [wheelchair], unable to propel. Med. hx. [history]-s/p [status post; “after”]
right CVA [cerebrovascular accident, or stroke], left hemiplegia with onset on 10/12/97;
hx of HTN [hypertension], insulin-dependent diabetes mellitus. Was employed
premorbidly as a plumber; married. Wife in good health. Patient oriented x 3 [able to
identify himself, his location, and the time/date].

Grip: right dominant 85 psi [pounds per square inch] left 10 psi [very limited]
Pinch: right lateral: 20 psi left 2 psi
3 point: 15 psi unable
tip pinch: 12 psi unable

Range of Motion: right UE [upper extremity] WNL [within normal limits]
left UE shoulder ﬂexion 70° actively [normal is 180°], 130°
passively with pain.
elbow WNL with mild synergy pattern noted [typical pattern of
movement after a severe stroke; often causes arm to
involuntarily ﬂex close to body]; active extension
wrist and hand WNL

Nine hole peg test: right 22 seconds left unable to grasp pegs
Sensation: Delayed pain sensation throughout left UE.

Visual Perception: Severe left neglect noted with House-Clock-F lower drawing test.
Cognition: Slow processing noted. Poor short term memory. Remote memory intact.
ADLs [activities of daily living]: Max assist [maximum assistance, requiring assistance
with 75% of task] with UE dressing and bathing, dependent [unable to do any part of
task] for LE [lower extremity] dressing and bathing. Moderate assist [able to complete

50% of task] for feeding. Max assist x 2 [with two people helping] for transfers
[transitional movements from chair to bed, sit to stand, etc.].

163

164

Assessment: Patient has deﬁcits 1n left UE strength, ROM [range of motion], sensation,
coordination, visual perception, and cognition. Severe left neglect noted.

Plan: OT 2x/day, 6 days/wk for 4 weeks with the following goals:

1. UE dressing at min assist

2. LE dsg [dressing] at mod assist

3. Patient will be able to use left UE as a nondominant assist in manipulating
objects.

4. Patient will be able to identify objects in left visual ﬁeld with min cues.

Recommended LOS [length of stay]--4 weeks. Will need 24 hour care, at least mod assist
for some self care by discharge. [This estimate is usually given by all therapists and
nurses involved with a particular patient. This statement projects that this patient will
need constant supervision and moderate assistance for self-care activities after discharge,
due to the severity of the deﬁcits listed in the objective and assessment sections of the
note.]

Carrie K. Alexander, MA, OTR/L

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