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Occupation in the lives of adults with schizophrenia: creations of hope

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Occupation in the lives of adults with schizophrenia: creations of hope

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Content OCCUPATION IN THE LIVES OF ADULTS WITH SCHIZOPHRENIA:
CREATIONS OF HOPE
by
Susan Saylor Stouffer
-------------------------------------------------------------------------------------------------
A Dissertation Presented to the
FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(OCCUPATIONAL SCIENCE)
August 2007
Copyright 2007 Susan Saylor Stouffer
ii
Acknowledgements
Despite the fact that ultimately, I had to do the work to complete this
dissertation, doing a dissertation is anything but a solitary experience. Many people
contributed to this process and helped make it possible. Let me begin by
acknowledging my research participants. I owe a large debt of gratitude to
Demetrius, Frank, and Lloyd. I feel honored by the faith they have shown in me by
trusting me with some of their life stories. Because of their trust, the responsibility I
have felt to try and communicate some of the things I have learned from them was
great, and was a large part of what kept me moving forward to finish this
dissertation. In addition to sharing their stories with me, I appreciate that they have
also listened and tried to support me in doing this research. I wish that everyone
could have the experience of getting to know these three men and have the
experience of sharing a bit of life’s journey with them.
Next, I would like to express my appreciation for my dissertation chair and
my professors who helped shaped my thinking. As I have worked with Dr. Ann
Neville-Jan as my dissertation chair, she has helped me frame my thinking, organize
my thoughts, and provided support when I needed it. I appreciate that we have even
been able to share our own stories of hope and challenge through the process. Dr.
Jeanne Jackson has challenged me and helped shape my thoughts about feminism,
and provided support throughout the process. Dr. Cheryl Mattingly inspired me to
think about the process of qualitative research and theory-making. Dr. Ruth Zemke
influenced my thinking about time use, as well as being a mentor and being
supportive throughout my doctoral studies. Dr. John Brekke influenced my thinking
iii
about schizophrenia. In addition to my committee members, I would like to express
my appreciation for Dr. Gelya Frank both for her support in my studies and for her
work in qualitative research which challenged my assumptions about what it is to do
research. Finally, I would like to thank Dr. Mary Lawlor who helped me frame my
thinking about hope when I was struggling to name that which I wanted to research.
This dissertation would not have been possible without the support of my
friends and family. Jill Goodman, Kim Wilkinson, Tomomi Watson, Don
Fogelberg, and Aaron Eakman, were all doctoral students with me who contributed
to this dissertation at different points. My housemates Sharon Tool, Leslie Fine, and
Darrel Tautofi provided lots of support and encouragement as I worked on
completing this manuscript. My friend Christy Snyder listened to me think out loud
and provided invaluable feedback and support throughout the dissertation process.
My minister Frank Wulf, my mom Carolyn Saylor, my friend Sharon Tool, and my
husband Carlos Stouffer all read parts of my dissertation and gave me feedback. My
brother Lanny L. Saylor, mother Carolyn Saylor, and father Lanny R. Saylor, and
other members of my extended family provided invaluable encouragement
throughout the process of this dissertation.
Finally, special thanks is due to my husband Carlos Stouffer. When things
got too hectic along the way, he was the one who had to do more around the house.
When I woke up some days full of doubt and despair that I would ever finish, he was
the one who told me I could do it. He also helped me keep a sense of humor along
the way. For being the supportive partner that he has been, I am truly grateful.
iv
Table of Contents
Acknowledgments: ii
Abstract: viii
Chapter 1: Introduction 1
Overview of this Study 1
Reasons for this Study 2
What I Have Learned from this Study 4
Multiple Axes of Alignment/Differentiation 8
Feminist Research Methods 13
Collaborative Ethnography 18
Occupation Defined 25
Schizophrenia Defined 26
Hope Defined 26
The Intersection of Hope and Occupation with Schizophrenia 27
Format of the Text 29
Chapter 2: Connecting the Dots: ETE, Me, and this Research 32
How I came to ETE 32
A View of ETE 41
ETE”s Program and Philosophy 47
Getting Started at ETE 56
Chapter 3: The Research Process 63
Becoming a Researcher 63
Research Relationships 64
Demetrius – an Introduction 70
Demetrius and I Cross Paths at ETE 71
Demetrius’ Relationship with Me 72
Frank – an Introduction 75
Frank and I Cross Paths at ETE 76
Frank’s Relationship with Me 78
Lloyd – an Introduction 81
Lloyd and I Cross Paths at ETE 82
Lloyd’s Relationship with Me 83
v
Chapter 4: The Three Research Participants 88
Demetrius Occupational Story: “What Makes Demetrius
Tick, is Basically, um Religion” 88
Introduction and Overview 91
High School 93
College 94
Leaving College 96
Demetrius is Diagnosed with Schizophrenia 96
Returning to College 100
Going to Work 101
Leisure Occupations 105
Demetrius Looks for Help Getting Started in Exporting 107
Demetrius and ETE 110
ETE Closes 116
Frank’s Occupational Story: The Pursuit of Recovery 119
Introduction and Overview 119
High School 120
College 121
Frank is Diagnosed with Schizophrenia 121
Changing Schools 122
Employment after College 123
Return to School 124
Leisure Occupations 125
Religion 135
Frank Looks for Employment Help from ETE 138
Going to Work 142
ETE Closes 146
Frank’s Struggles with Mental Illness 148
Lloyd’s Occupational Story: “I Wanna Be Rich” 154
Introduction and Overview 154
Lloyd is Diagnosed with Schizophrenia 158
High School 161
Pursuing Religion 162
College 165
Work 166
Leisure Occupations 169
Getting Help from ETE and other Vocational Services 172
ETE Closes 177
vi
Chapter 5: Viewing Schizophrenia through Occupations
in the Lives of Three “Regular Guys” 183
Introduction 183
Occupation as Lens 185
The Diagnosis of Schizophrenia 190
Treatment for Schizophrenia 193
Political and Socio-Cultural Context
of Understanding Schizophrenia 194
Schizophrenia in OS and OT Literature 198
Schizophrenia in Literature from the Field of Mental Health 202
First Person Narratives of Schizophrenia
and Qualitative Studies about People with Schizophrenia 205
Schizophrenia through the Lens of Occupation in this Study 206
Participants Want the American Dream 207
Being Diagnosed with Schizophrenia 210
Living with the Diagnosis of Schizophrenia 214
Receiving Disability Payments 219
A View of the Participants’ Lives through the Occupation of Work 222
A View of the Participants’ Lives through Church
and Religious Occupations 228
A View of the Participants’ Lives through Leisure Occupations 233
Final Summary 242
Chapter 6: Living Hope 244
Introduction 244
A Brief History of Hope 246
Defining Hope 249
The Positive Side of Hope 251
The Negative Side of Hope 253
Responding to the Criticisms of Hope 255
Hope and Schizophrenia in the Occupational Science
and Occupational Therapy Literature 257
Hope and Schizophrenia in Literature
from the Field of Mental Health 258
The Research Process as a Source of Hope 261
Participants’ Hopes 269
Hope as a Process 269
Sustaining Hopes with Relationships and/or Role Models 280
Hopes and Religion 289
Hopes Related to Occupations 295
Critics of Hope and Views on Hope 308
Summary of Hopes 315
Final Summary 318
vii
Chapter 7: ETE Revisited 320
ETE as a Different Kind of Program 320
ETE Closes 325
The Implications of ETE’s Closing 332
Chapter 8: Conclusions 335
Introduction 335
How the Research Participants Lived with Schizophrenia
and How that is Related to Occupations 335
How Hope and Occupations Intersected in the Lives of the
Research Participants Living with Schizophrenia 339
How Funding Issues Impacted ETE and the Research Participants 342
Implications and Areas for Further Research 344
References 350
Appendices
Appendix A: ETE Letter of Approval to Conduct Research at ETE 365
Appendix B: Diagram of ETE 366
Appendix C: The ETE Good Service Checklist 367
Appendix D: Informed Consent 368
viii
Abstract
This ethnographic study was conducted to better understand the roles and
process of hope and occupation in the lives of adults with schizophrenia. During the
course of several months, I conducted semi-structured interviews and participant
observations with three men who had schizophrenia. I found that these three men
distanced themselves from labeling associated with schizophrenia, preferring to be
associated with their work and leisure occupations. They each had what some others
in their lives considered to be high hopes. These hopes both shaped and were shaped
by the occupations in which they engaged. In the face of criticism, each of them
continued to pursue their hopes and revise them as necessary when they encountered
obstacles. Despite debates in the hope literature about “false hopes,” clients with
schizophrenia would be better served by trying to understand their hopes, and
helping them in the process of revising them and trying to attain them.
1
Chapter 1
Introduction
Overview of this Study
This dissertation is about the intersection of schizophrenia,
occupation, and hope in the lives of three men who have been diagnosed with
schizophrenia. It is about how these three men have created and maintained
hope, while living with this diagnosis, and despite negative feedback from
friends, family, and mental health/employment service providers. It is about
a process of hoping, and how it relates to everyday activities, or occupations.
My dissertation began with the question “What is the experience of adults
living with schizophrenia as they attempt to create meaningful lives?” I
wondered about the struggle to create meaningful lives related to everyday
activities or occupations. Finally, I considered how these experiences of
trying to create meaningful lives was related to hope, and the process of
hoping.
In this chapter I begin with my reasons for doing this study, and what
I learned from doing it. I examine some of the axes of alignment and
difference between the participants and me. Next, I outline aspects of
feminist research methods and collaborative ethnography used in this study.
Finally I briefly define schizophrenia, occupation, and hope as used in this
study.
2
Reasons for this Study
There are three primary reasons for doing this study. The first reason
comes from my experiences working as an occupational therapist with adults
diagnosed with schizophrenia, and with other chronic mental illnesses. I
once worked with a funny, talented, spiritual, and caring man, who struggled
to create a meaningful life within the context of his mental illness. He had
great potential. He wrote poetry, did desk-top publishing, and was a leader in
a community program for people with mental illness. He managed to finish a
master’s degree in Library Science, and was very active in the community.
Yet, he ended up dying from an overdose of his medications. Because of this
man and others with whom I worked, I wanted to do this study so that I could
better understand what it was like to live with schizophrenia.
My second reason for doing this study has to do with the fact that the
body of literature about people with schizophrenia has been overly focused
on pathology, and much less on people’s strengths. I believed that some
communities of people, like those living with schizophrenia, have acquired
unique knowledge through the struggle of living with difficulties. In fact, I
believed that often the strengths of an individual arise from their struggles.
Frankl (1963) addressed such meaning that can be found in suffering. From
his experience in a Nazi concentration camp, he realized that in order for
human beings to find justification for their own continued existence, they had
to be able to find meaning in suffering. As I thought about my study, I was
interested to find out more about the experience and meaning of struggle in
3
living with a disorder like schizophrenia. Thus, I arrived at the idea of
studying the experience of adults living with schizophrenia, and their
struggles and successes in creating hope in the face of the difficulties that
living with this disorder presents.
Third, in addition to my desire to understand the experience of living
with schizophrenia, I was also attracted to this subject because of my own
experiences. As a child, I survived cancer, and was left with a visible
disability. The experience of coping with this disability and the possibility of
the cancer recurring, have been the roots of my interest in others’ struggles
with disability, disease, and their long-term effects. The experience of living
with cancer is quite different from the experience of living with
schizophrenia. Yet, my own experiences with cancer have instilled in me a
profound respect for the power of hope in the face of disability and disease,
and an interest in learning more about this power. In addition, I have
struggled with depression during my life, which has furthered my interest in
working and doing research in the arena of mental health.
In summary, I have conducted this study because, having worked with
adults diagnosed with schizophrenia, I want to understand better the
experience of living with schizophrenia. I am also interested in this topic
because of my desire to contribute to literature focusing on the strengths of
adults with schizophrenia instead of pathology. Finally, I have chosen to do
this study because of my own experiences with cancer, disability, depression
4
and hope. Having chosen this topic and having completed the research, I will
now describe what I have learned from this study.
What I Have Learned from this Study
What I have learned from this study can be divided into several
themes. The first theme is about the intersection of hope, schizophrenia, and
occupation. Secondly, there is learning about the experience of living with
schizophrenia. Thirdly, I experienced my own transformation as a researcher
and as a person in the course of this study. In the section that follows, I
briefly describe the learning related to each theme.
Hope
Hope was an important mechanism in the lives of the men diagnosed
with schizophrenia who participated in this study. I learned that it was
important to understand the context of each man’s hopes so as to understand
better the experiences, skills, and resources that made each man’s hopes more
realistic. They taught me how resilient hopes can be, and how hopes can be
supported by relationships and role models. Religion and religious
occupations were also important forces in sustaining hopes and regaining
hopes when each man became discouraged. They also taught me about the
process of hoping – how someone can have a specific hope and as obstacles
are encountered, find pathways around those obstacles or refigure the hope.
From them I learned how hopes shaped, and were shaped by their
occupations. They were, however, negotiated hopes. Hope comes not just
5
from what the participants do and believe, but also gets negotiated with other
important people and organizations in their lives. The negotiation process
many times involved other people making judgments and offering feedback
about the feasibility of the participants’ hopes. This feedback may or may
not have be helpful, and may or may not have even be desired. This leads to
a question about whether such feedback about the feasibility of someone
else’s hopes should even be offered. It is a topic which I will explore in a
later chapter of this dissertation.
Living with Schizophrenia
Other learnings from this dissertation were about the experiences of
living with schizophrenia. Though schizophrenia is a serious mental illness
with sometimes debilitating symptoms and much associated stigma, the
participants in this study also taught me that schizophrenia was merely one
aspect of their lives and not the central focus. This lack of centrality of the
illness experience was quite unlike the experience of people with whom I
worked in the hospital setting where I was previously employed as an
occupational therapist. In that acute care psychiatric hospital, we often saw
people in great distress due to an exacerbation of their disorder. In that kind
of acute crisis setting, the illness experience was paramount, seeming at times
to consume all of the person’s time, energy, and focus. Being able to share
many aspects of these three men’s lives for the past two years has provided
me quite a different view. The three men who participated in this study were
6
adults working to build meaningful lives in their own space and time, and
schizophrenia was just one piece of that puzzle. The aspect of schizophrenia
which concerned these men the most was the stigma and prejudice they
experienced as a result of this diagnosis. Their negative experiences ranged
from being called names to being turned down for jobs. These negative
experiences of living with the diagnosis of schizophrenia may have been
much of the force behind them trying to distance themselves from association
with this diagnosis and led to their desire to be seen as “normal” or “regular.”
The three men in this study engaged in a variety of occupations that
were meaningful to them on multiple levels. These occupations had personal,
spiritual, and socio-cultural meanings. The men participated in a wider
variety of occupations with more levels of meaning than I could have
anticipated in the early days of my research when I was observing them in
appointments with their job coaches at Enrichment through Employment
(ETE).
Funding and ETE
Finally, I have learned much about the possibilities and difficulties of
running a non-profit employment agency for people with mental illness, such
as Enrichment through Employment (ETE), my research site. ETE was a
program that was started by parents of adult children who were mentally ill
and hadn’t really been able to work. ETE had become a place that both made
employment accessible for adults with mental illness and helped them to
7
succeed at it. ETE had a long waiting list because of its success in helping
adults with mental illness become employed. When ETE was unable to
successfully negotiate an increase in funding after several years of success,
the agency closed. This was shocking to me. I had assumed that such a
successful program would be able to secure additional funding. This
experience made me realize the importance of both understanding funding
mechanisms and being able to effectively advocate for successful programs.
Personal Learning
As I have contemplated and analyzed this research, the relationships
and understandings that I experienced over the period of the past two years
has had a personal impact. First, I realized that it is impossible to study
something like hope in the abstract. As the participants and I shared stories
of hope, I found encouragement in my journeys – both as a researcher and as
a person. Second, I began this research hoping to understand better the
experience of living with schizophrenia. I sensed that there must be more to
people’s lives who were living with schizophrenia than pathology. What I
didn’t realize fully was how powerful it would be to get to know someone’s
story and life in the way one does with qualitative research. I was impressed
by the strength and resourcefulness that these three research participants
demonstrated in creating meaningful lives despite living with schizophrenia.
I felt very privileged to have the three participants share their lives and stories
with me, but I also felt a great sense of responsibility in trying to be
8
respectful of them in the process of the research and in conveying their
stories. From the beginning I wanted to convey a sense of respect for and
partnership with the participants. This desire influenced even my choice of
methods which I describe later in this chapter. Even so, I struggled
throughout this research process with how to conduct myself as a researcher
while maintaining a human face with the participants. I discuss more of this
struggle in a later chapter.
Since qualitative research methods tell us that there is really no such
thing as an objective researcher (Bloom, 1998; Frank, 1997; Hasselkus, 1997,
Stoeltje, Fox, and Olbrys, 1999), it is important to situate one’s self as a
researcher and claim whatever perspective that entails. I am certainly no
exception. I chose this research topic because of aspects of my own
experiences and beliefs which I described earlier in this chapter.
Next, I will describe points of alignment and difference between me
and the research participants.
Multiple Axes of Alignment, Differentiation
In disciplines such as anthropology there have been questions about
the role of the “insider” as researcher (someone who is studying a
community/culture from which she/he comes) versus “outsider” as researcher
(someone who is not from the community/culture she/he is studying).
Narayan (1997), described the role of “outsider” in this dialectic as follows:
“Those who are anthropologists in the usual sense of the word are thought to
9
study Others whose alien cultural worlds they must painstakingly come to
know.” While “insiders” “are believed to write about their own cultures from
a position of intimate affinity.” Narayan calls this dichotomy into question.
She explores the multiple and shifting axes of alignment and differentiation
of the researcher from those being studied. From the perspective of this
tradition of alignment and difference, I find major aspects of alignment and
difference between me, and the men in this study. In the following section, I
will describe these similarities and differences.
Similarities
There were several aspects of alignment between me and the research
participants: socio-economic background, educational access, ability to work,
exposure to the mental health system, and struggle with disability/disease. I
am a Euro-American woman with a disability who comes from a middle-
class background. The three men in this study also came from middle-class
backgrounds, though one was of Arab descent, one was African-American,
and one was European-American. I have been able to pursue college both as
an undergraduate and graduate student, and all three men in this study had at
least some involvement in college. Prior to returning to school for my Ph.D.,
I worked in several different fields including information systems, education,
and occupational therapy. The three men in this study all worked in various
fields at different points in their lives. One worked as a painter and janitor,
one in an import business and as a consultant, and one as a clerk at a grocery
store and a few short-lived jobs. Most all of my practice as an occupational
10
therapist has been in the field of mental health, and at times I have seen a
therapist during periods of depression. The three men in this study have had
varying degrees of interaction with the mental health field as clients, but all
have at least had some interaction. My own experience as a woman with a
disability has led me to be sensitive to, and perhaps more understanding of,
the struggles of many groups which are seen as different in some obvious
aspect from the majority – racially, ethnically, religiously, physically,
mentally, sexually, etc. In this way, though my struggles as a woman with a
disability are obviously different in specifics from those with a diagnosis like
schizophrenia, I feel some sense of connection between fellow strugglers
traveling against the mainstream currents.
Differences
The differences are equally important between my experiences and
those of these three adults with schizophrenia. The points of difference
between me and the research participants included views on accommodation,
educational attainment and vocational struggles, relationships, and finances.
I have been actively involved in social justice issues and campaigns, both at
work and outside of work. These interests in health and social justice have
been the driving force in much of my professional and personal life. In
contrast, the three men in this study had all learned to be more
accommodating to the ever-varying demands of the mental health, and
vocational system, so that they seldom “rocked the boat.” I have also been
afforded both ability and access to work toward a graduate degree in the field
11
of my choice – occupational science. Prior to this, I was able to try out
several job and career options before finding a career in occupational therapy,
which I found meaningful and also financially sustaining.
The men in this study had varying degrees of difficulty with
educational attainment and vocational pursuits. Schizophrenia frequently
manifests as psychotic episodes during formative college or early career
years, as was the case with these men. Though the three men who
participated in this study were able to achieve some educational goals and
had some success with vocational goals, coping with schizophrenia made the
completion of educational goals and career goals more difficult. In addition,
the stigma attached to a diagnosis like schizophrenia contributed to their
difficulties since people sometimes made negative assumptions about their
abilities to succeed.
Another arena of differences between our experiences relates to
relationships. I have maintained a long-term relationship with a significant
other for many years. Though each of the men in this study desired, thought
about, and desired to find a significant other with whom to share his life, this
hope was still unfulfilled. Part of each man’s struggle for a lasting significant
relationship was the desire to have a stable job, and to be able ability to
provide a home for a significant other one day. Their inability to attain job
stability interfered with their longer term goal of providing a home.
My husband and I are far from wealthy, and perhaps not even middle-
class by some economic standards, yet we have always had enough money to
12
be able to provide housing for ourselves. We have also had enough
disposable income to be able to do such things as travel. The men in this
study, due to the struggle for job stability, lacked the disposable income to
pursue some leisure interests. All three had assistance with housing to
varying degrees due to income limitations. One lived with his family, while
another lived in housing owned by his family. The third lived in a group
home.
Neither the alignments, nor the differences with which I began this
research project were insignificant. Hopefully, by being clear about these
alignments and differences from the outset, I have been able to create a
meaningful dissertation and experience for myself, the men in the study, and
the readers of this manuscript.
In the next sections, I will describe more of the methods I chose for
this study. Primarily because of my social justice values, it seemed important
to be as collaborative as possible in this research. In this way, I hoped to
convey respect and value to the participants, since people living with
schizophrenia have often been stigmatized and dis-empowered. Thus I
arrived at a collaborative ethnography conducted in the tradition of feminist
research methods with a design of multiple case studies. I will begin by
describing the feminist research methods that guided this study, and then
describe the collaborative ethnographic procedures I used.
13
Feminist Research Methods
One of the important underpinnings of this study is that I chose to do
it using Feminist Research Methods. When I first encountered Feminism in
my Ph.D. classes, I thought it was only about advancing an agenda of
political and social issues for women. I was wrong. As I studied, I began to
see that Feminism had grown well beyond that arena and encompassed ways
of being in the world and relating to it. For the purpose of this study,
Feminism specifically puts forth a way of conducting research – Feminist
Research Methods. Feminist Research Methods seek to “break down the
barriers that exist between the researcher and the researched” (Bloom, 1998)
or the “knower” and the “known” (DeVault, 1999). When I was planning
this study, I found great resonance with the ideas of feminist research
methods. I really appreciated feminist research methods as they attempted to
address issues of power in research and the idea of objectivity. Therefore I
chose to incorporate aspects of feminist research methods, outlined below,
into this research.
Feminist research methods have many complexities and nuances. For
the purposes of this brief overview, I will only discuss some of the pertinent
primary themes and issues. Feminist research methods seek to break down
the barriers between researcher and research participant by addressing
concerns such as reflexivity, collaboration, and the researcher’s authority as
interpreter (Bloom, 1998). Some of the methods whereby these concerns
have been addressed include: 1) addressing issues of empowerment and
14
social transformation through research, 2) challenging the norm of objectivity
that says that the subject and object of research can be separated from one
another, and 3) using reflexivity in all aspects of conducting the research
(Cook & Fonow, 1990).
Empowerment and Transformation
In this study, there are several ways in which I addressed the issue of
empowerment. First, I chose to focus on the creation of hope in living with
schizophrenia because I thought it would potentially be empowering to the
participants to highlight the positive aspects of how they lived with this
diagnosis. In so doing, I wanted to highlight the successes and strengths of
people living with schizophrenia, rather than the pathology of the disorder.
As I was designing this study, I thought that even if the participants lacked
hope, this study would allow for increased understanding of the contexts
social, cultural, and political issues that might be obstacles to their hopes,
such as the disability support system. This knowledge gained could
potentially be socially transformative. If, as a result of this research, we were
able to better understand how people with schizophrenia were successful in
moving ahead and what issues presented obstacles to their success, it would
be easier to support the successes and address the obstacles. My study did
point out both the resilience of the hopes the men held, and also the
challenges to those hopes.
I also addressed issues of empowerment and transformation by my
intentional use of language. I chose to use the term “people with
15
schizophrenia,” as opposed to “schizophrenic,” “client,” or “patient with
schizophrenia,” thus privileging each man’s personhood above his disorder.
I only refer to people as “clients,” in relationship to Enrichment through
Employment (ETE) where I conducted my study. I have used the word
“client” in those cases because that was the language used by ETE. In the
same way, I only refer to people as “patients” in reference to hospitals where
I worked because that was the language used there. I have also consciously
chosen to call the people enrolled in this study “participants” instead of
“subjects.” Even when the Internal Review Board for Human Subjects
Research (IRB), asked me about “subjects,” I chose to respond by speaking
of the “participants” in this study. I believe such language highlights the
collaborative aspects of this study. This change in language from “subject”
to “participant,” “stakeholder,” or “respondent” is also changing in the
literature. It reflects a more empowered view of the participants as partners
in the research (Punch, 1994). My choice of words accentuated the
empowerment experienced by persons who chose to participate as
collaborators in a research project. It did this in lieu of focusing on
medicalized identities of “schizophrenic” and “subject.”
I also addressed the power differential in this research project by
giving each of the research participants in this study the opportunity to
choose their own pseudonym. Doing this made at least as much sense as my
choosing some name for them – either a random name or something that
meant something to me. Naming, even the assigning of a pseudonym – is an
16
act of power. Since I was interested as much in the process as the outcomes
of this research, it was important to shift some of the power to the
participants.
Empowerment was also an important factor in my choice of
collaborative ethnography. The collaborative aspects of this study
empowered the participants to participate in the analysis of the data and the
creation of the text. These efforts at empowerment might not have eliminated
all of the power differentials in this research, but they took some steps toward
addressing them.
Objectivity and Reflexivity
I also attempted to address the illusion of objectivity by using
reflexivity in the research process or reflecting on my role in this research. In
the feminist tradition of research, the challenge from a reflexive standpoint is
not to eliminate bias, but to use the subjective to deepen insight and
understanding (Frank, 1997). Reflexivity involves “consciousness about
being conscious, thinking about thinking” (Frank,1997, p. 87). Reflexivity
has been increasingly the focus of theoretical discussion in ethnography,
particularly in regards to power discrepancies between researcher and
participants (Jaschok & Jingjun, 2000).
Reflexive strategies of analysis have become so predominant that the
concern has become not whether the subjective or self should be included in
the research, but rather how to keep this analysis from becoming the end in
17
itself (Lal, 1999). Solving the dilemma of how much of oneself to include in
the research process has also been discussed as the tension between building
relationships that allow for the kind of intimacy needed to share sensitive
information, while trying to alter as little as possible the everyday life
experiences the researcher is trying to understand (Lawlor & Mattingly,
2001). This balancing act has also been framed as the dilemma of how much
of the researcher’s private world is interjected into the research process of
creating knowledge in the public domain (Edwards & Ribbens, 1998).
In the case of this dissertation, I have chosen to begin reflexively by
describing my positioning and beliefs as the researcher in this project.
Describing the multiple axes of alignment and difference between myself and
the participants is part of this process. I have also tried throughout the
process of collecting data and analyzing it, to reflect on how my presence and
position influence the process. I recognize that the topic itself and how I
have framed it come from my own beliefs, interests, and experiences. In
addition, the research relationships are just that, not just “subjects” answering
questions, but relationships that are shaped by both the participants and by
me. Thus, the data itself is shaped by the interaction between me, the
participants, and the questions asked. The analysis is also shaped by the
information and experiences shared by the participants and by my
understanding and reflection on that, as well as the influence of relevant
literature. By being both cognizant of my role in this process, and by
reflecting on it in the text, I hope to have owned my own position and role in
18
this research and to have avoided the illusion of objectivity. This is in
keeping with the feminist tradition of advocating “a participatory research
strategy which emphasizes the dialectic between researcher and researched
throughout the entire research process (Cook and Fonow, 1990).”
I have tried to address some of the dilemmas of research by focusing
on empowerment and social transformation, by carefully situating myself as
the researcher, by assessing the points of alignment and difference, and being
reflexive about my role in the research in order to avoid the illusion of
objectivity. The dilemmas to be addressed in research include the power
differential between participants and the researcher, the need for a different
way of knowing than the qualitative attempt to be objective, the ethics of
access to the participants, and the need for transformation and social change
(Cook and Fonow, 1990).
These same issues of power in research also led me to another aspect
of my methods – collaborative ethnography – a method of collaborating with
the participants in the analysis and construction of the text. In the next
section I will talk more about what collaborative ethnography is and how I
chose to do this research as a collaborative ethnography.
Collaborative Ethnography
I decided to do this research as an ethnography because the literature
points out that ethnographic methods including participant observation and
prolonged fieldwork (Savage, 2000) could provide better insight into the
19
relationship between occupations in people’s daily lives and their hopes.
Some important benefits of conducting this research as an ethnographic study
come from the occupational therapy literature. They include: 1) providing an
“insider’s” view of illness, 2) allowing a more holistic perspective of the
person with an illness in his/her natural environment, and 3) focusing on a
participant’s experience of everyday life as it might be related to health
policy decisions (Krefting, 1989). Additionally, the relationship building that
ethnographic methods require, produces insights into complex phenomena
(Lawlor and Mattingly, 2001). In Lawlor and Mattingly’s (2001) research
about African-American families who have children with illnesses or
disabilities, ethnography has involved the intersection of healthcare services,
providers, families of children with disabilities or illnesses, and race.
Specifically, I chose to conduct this research as a collaborative
ethnography to help balance some of the inherent power differential between
researcher and participant. I also thought it would allow me to better
understand the experience of occupations and their meaning in the lives of
the three men who participated in this study. Collaborative ethnography
includes the research participants or a group of consultants from the
participants’ community in the analysis and design of the text (Lassiter,
2000). Collaborative ethnography, reflexive ethnology, and other innovative
methods are attempts to manage potential power differentials between
researcher and research participant, and to bring the researcher into the text
(Lamphere, 1994).
20
My concern about participant inclusion in the research endeavor can
be illustrated by a story in Holland, Lachicotte, Skinner & Cain’s (2001)
work on identity and agency. Holland described an incident in which she and
her colleague Skinner were interviewing women in a community in Nepal in
which the caste system was very strong. Holland and Skinner had invited
different women to come and be interviewed at Holland and Skinner’s house.
As they were sitting on the rooftop balcony interviewing one woman, another
woman showed up and they called down to her to come up. The woman,
instead of taking the usual route through the house and up to the balcony,
climbed up an outside wall to the balcony. Skinner and Holland speculated
about the possible causes of this woman’s action. They ended by discussing
this event as pivotal in their developing theory about situationally improvised
identities created from available cultural resources. What is interesting to me
in this story is that they say they did not know how the woman herself would
have explained her actions. They did not ask her. I recognize that there can
be multiple interpretations and understandings of an event, and that the
woman herself might not have even been able to enumerate the many factors
that caused her to scale the wall – yet she might have, had they asked.
In my own study, I attempted to understand the participants’
motivation and analysis of their own actions and responses by asking them
why they thought they “climbed the wall to get to the balcony” and how their
understanding should best be presented. Sometimes this worked and
sometimes it didn’t, because sometimes they could, or were willing to tell me
21
what they were thinking when they performed certain actions, and other
times, they couldn’t tell me or weren’t willing to share this information. Yet,
I felt it was important to give them this opportunity as an aspect of allowing
them to have more of a voice in the text.
Another method for giving research participants a voice in the text is
to allow them to participate in the construction of the text. At the least,
Herrera (2001), in writing about research ethics and interpretive stance, said
that the subjects of research have a right to know how the researcher plans to
describe them to the readers. There are also calls in qualitative research for
renewed methods that respond to critiques of representation (O’Neill et al,
2002). In an anthropological research tradition, Lassiter (2000) discussed the
issue of allowing the research participants from a community, such as Native
Americans, to have a voice in the analysis of the information collected. He
said that some ethnographies now include comments from people within the
community, but mostly as a parallel voice.
Some researchers have taken a further step in equalizing this power
structure and responding to the critique of the researcher giving voice to
others by conducting collaborative or reciprocal ethnographies (Lassiter,
2000). In collaborative ethnography, the content of the text, as well as
control and authority, is resituated in a dialogical relationship between
informants and the researcher. The analysis by the researcher, as it evolves,
is taken to consultants from the community being studied, who offer their
22
interpretation, critique, and suggestions. The evolving manuscript is, thus,
co-constructed.
In their study of women living with HIV/AIDS, the researchers Lather
and Smithies (1997), did a collaborative ethnography. After conducting the
research, they constructed the manuscript and then allowed the research
participants to be an editorial board and give feedback, which the researchers
used in revising the text. Horwitz (1993) described a similar process of
presenting a draft of the text to the research informant for his/her feedback.
He described the range of experiences in what is not always the easy task of
editing the text together with the informant. “These editing sessions have
ranged from the most congenial to the most acrimonious encounters of my
adult life.” (Horwitz, 1993).
In their research about clinical reasoning conducted in collaboration
with a group of occupational therapists, Mattingly and Gillette (1991)
discussed the wealth of insights and implications that such a collaboration
brought forth. Occupational scientists have also used these methods. Frank
(2000) used such collaboration in her ongoing study of and attempt to write
about Diane DeVries. DeVries is a unique individual who has been
constructing a meaningful life for several decades despite being born without
arms or legs. Frank discussed the struggles she had in letting go of complete
authority and control over her manuscripts and subsequent book. As Frank
gave up this control, she was able to allow DeVries to help shape the way in
which she was represented in these works.
23
Research in its very essence is a collaborative process. Without
sharing and participating in the daily life activities afforded by the
participants in a research project, there is nothing for the researcher to write
about. Thus, it is a natural extension of the dialogic and negotiated
partnership that has always existed in the research process to extend this
same process to the construction of the text (Lassiter, 2001). This attempt at
collaboration, even in the construction of the text, can be particularly
important and empowering in communities such as adults with schizophrenia.
The everyday lives of these adults involve frequent power differentials –
deference to the medical expertise of others, lack of societal positions of
power or jobs, and even deference to families who must make care decisions
for them at times when they are incapacitated. Some researchers within the
mental health arena argue that “conventional approaches to research on
mental illness provide yet one more source of the loss of self, unwittingly
undermining rather than promoting recovery by treating the person with the
disorder as a passive object to be investigated and acted upon by others”
(Davidson, Stayner, Lambert, Smith & Sledge, 2001, p. 164).
This is not to say that collaborative ethnography is the only and best
method of conducting research. Research takes many different forms that
involve varying levels of participant involvement, based on the way the
research project is conceived, the participants’ interest in involvement, and
what the desired outcomes are. Also, as a colleague reminded me, not every
participant might desire to become involved in the actual interpretation of the
24
research. So, though collaborative ethnography might answer some of the
challenges as to research participants’ representation in the text, the
collaborative aspect of this ethnography existed only to the extent that the
participants desired to become involved in the analysis.
As I developed each participant’s story, I gave him a copy of it and
asked for feedback. Each of the three men thanked me for including them but
each responded differently. One of the participants asked me about selling
his story that I had written. One was interested in using his story for a book
he was writing. One was interested in correcting a few factual errors and in
being supportive of my finishing the manuscript. All three indicated a desire
to stay in touch and have periodic updates, but none of them seemed
particularly interested in reading and helping construct the entire manuscript.
They did respond to periodic discussion about what I was thinking. At times
and to varying degrees, they helped me think through the analysis.
I have outlined the methods I have chosen to use for this dissertation. The
methods are firmly rooted in feminist methodology, with the particular
method being a collaborative ethnography. I will now turn to the specifics of
the topic I have chosen. I will describe and briefly define the key concepts to
be used in this dissertation – occupation, hope and schizophrenia. I will
begin with the concept of occupation.
25
Occupation Defined
I conducted this study from the interdisciplinary perspective of
Occupational Science. Because it is a study that is focused on hope as seen
through occupation, occupation provides a unique window to see hope in
action and application to meaningful activities. Unfortunately, many upon
hearing that this study is about occupation will immediately assume it is
about work. Occupation in contemporary language usage is often narrowly
defined as jobs/work. This kind of misunderstanding was present as I
attempted to explain my field of study – occupational science - to the staff at
the site where I conducted my study, Enrichment through Employment
(ETE). I had to explain that occupation has come to be associated narrowly
with jobs, but that in the field of occupational science, we were concerned
with a much broader and older definition of occupation. An important idea
about occupation is that it involves activities can be considered activities of
everyday life (Yerxa et al., 1990) and as such can encompass the array of
human endeavors – bathing, cooking, eating, driving, reading, writing,
drawing, working, walking, skydiving. They are the “activities people
engage in throughout their daily lives to fulfill their time and give life
meaning” (Hinojosa & Kramer, 1997, p. 865).
This broad definition of occupation provides a powerful lens for
viewing and trying to understand hope in the lives of adults living with
schizophrenia. An occupational view of hope focuses on hope as lived,
rather than a theoretical concept. This occupational view of hope through
26
occupations is like the difference between seeing the time on the face of a
watch, and being able to see the watch keeping time as you lift off its back.
An occupational view of hope is a richly detailed view of the daily workings
of the mechanism of hope in the lives of adults with schizophrenia.
Schizophrenia Defined
Schizophrenia is defined as a severe mental disorder which impairs a
persons thoughts, emotions, and understanding of reality and includes such
symptoms as hallucinations, delusions, disorganized thinking, inappropriate
behavior, blunted affect, loss of motivation, poverty of thought, and social
withdrawal (Diagnostic and Statistical Manual of Mental Disorders [DSM-
IV], 1994). Functioning in activities of daily living such as work and self-
care must be markedly below the level achieved prior to onset of the
symptoms, and in addition, symptoms must persist for at least 6 months
(DSM-IV, 1994). Though there are differing types of schizophrenia such as
paranoid and disorganized types (DSM-IV, 1994), I used the definition for
the basic disorder of schizophrenia as outlined above rather than any
particular sub-type. In the next section, I will give a brief definition of hope.
Hope Defined
In framing my question about the experience of living with
schizophrenia, I was searching for a concept that offered an opportunity for
understanding both the difficulties and the accomplishments of participants. I
27
arrived at the concept of hope through reading, discussion with professors,
and reflection. Hope is often differentiated into two broad types – a general
type that pervades one’s outlook, and a more particular type related to
specific goals or outcomes (Farran, Herth, & Popovich,1995; Shade, 2001).
The more specific type of hope seems most closely related to
occupation; thus it is the form of hope upon which I focused in this study.
Specific hopes are about desired future outcomes that must be perceived as
possible to the person hoping, but not at all certain (DuFault & Martocchio,
1985; Shade, 2001; Farran et al, 1995). Since the person who is hoping,
perceives the object of his/her hoped for desire as possible to attain, hopes are
more than just wishful thinking that may not be perceived as possible at all
(Nunn, 1996). At their most basic, specific hopes are about possibility and
desire (Godfrey, 1987). This idea of hope as a combination of desire and
possibility can lead to forward motion in the pursuit of the hoped-for result.
This definition of hope as the combination of the desires of the person
hoping, and the belief held by the person hoping that there is a possibility of
attainment, is the definition for hope that I used in this study.
In the following section, I will discuss how hope, occupation, and
schizophrenia intersect in the literature.
The Intersection of Hope and Occupation with Schizophrenia
Much of the research about schizophrenia is quantitative and focuses
on pathology and medication (Bhui, 1997; Lee, Jayathilake, and Meltzer,
28
1999), or outcomes such as quality of life (Aubin, Hachey & Mercier,1999;
Röder-Wanner, Oliver & Priebe, 1997). Clearly living with schizophrenia is
difficult, but there is little literature about the strengths and positive aspects
of the lives of adults with schizophrenia.
There isn’t much qualitative research that attempts to understand how
adults diagnosed with schizophrenia use occupations or activities to create
meaningful lives. There are only a few studies focusing on adults with
schizophrenia using occupations to create hope. One study by Borell, Lilja,
Svidn, and Sadlo (2001)that focused on how older adults who had to give up
valued occupations due to physical impairments had reduced hope. Other
strong links between hope and occupations are presented in the narratives of
adults with schizophrenia (Childers, 1995; Kramer & Gagne, 1997; Davidson
& Strauss, 1997). One person struggling with psychosis described how she
began to realize there were possibilities for life outside the seclusion room in
the psychiatric hospital, and so she began to notice and explore opportunities
and started getting more involved in the activities around her (Davidson &
Strauss, 1997).
Because of my desire to better understand the lives of adults with
schizophrenia outside of the hospital and to focus on more positive aspects of
their experience, I became interested in hope as something that might allow
them to move forward through difficulties. For my dissertation I chose to
study how the daily life experiences and occupations of some adults with
schizophrenia were related to their hopes.
29
Having outlined my reasons for doing this study, what I learned from
it, the methods I used, and having defined the basic concepts used in this
research, next I will describe the layout of the rest of the text.
Format of the Text
In this final section of the introduction, I will overview the remaining
text of my research. Having done the initial analysis of the data I collected, it
was not easy to decide how to organize the text. I finally decided that what
made sense to me was to follow something of a chronological order in the
account of my experiences in conducting the research. In other words, I
decided to put the manuscript together as an unfolding story. This means that
the text begins with my first experiences in the field and ends with final
updates from the participants and research site. In the initial chapters the
reader of this manuscript will find a lot of “me” present as a character.
Chapters 2 and 3 chronicle my getting approval to conduct the research,
finding a site, and dealing with the dilemmas in the field. I am less present as
a character in the later chapters though I obviously remain the narrator and
am present in my reflections and analysis of the research.
Writing in this manner means that my research participants don’t get
introduced until I have found the site and begun to find my way as a
researcher. Though this may seem a little unusual, it made sense to me to do
it this way as the story of this research unfolds chronologically. It also made
sense to me not to introduce them as just people I met at ETE until I could
30
fully introduce them as the research participants, describe our relationships,
and provide the story of their occupations. This also means that the stories of
the three research participants weave in and out of the story of the larger text.
I introduce their stories in Chapter 4, but continue to revisit them in the
analysis of Chapters 5, 6, and 7.
Since I am following a chronological order in the construction of this
text, I begin Chapter 2 after my dissertation committee approved the research
proposal. I detail the process of obtaining approval from the Internal Review
Board for Human Subjects Research (IRB) at U.S.C. After receiving
approval from IRB to conduct this research, I describe my struggle to find a
research site. This search for a research site lead me to Enrichment Through
Employment (ETE). In the text I describe ETE as the setting for this research
including the program, philosophy, and staff. I also describe how I
conducted my research at ETE, including the research methods.
In Chapter 3 I tell about the research process. I describe what is was
like learning to be a researcher, and the dilemmas that occurred in the field. I
briefly introduce and describe each of the three research participants in this
study and how I met them at ETE. I also discuss the research relationships I
had with each of these three men. Then, in Chapter 4, I present the
occupational story of each man’s life.
In Chapter 5 I analyze the role that occupations played in each man’s
life in general and in relationship to having a diagnosis of schizophrenia.
Chapter 6 discusses the relationships between hope, occupations and
31
schizophrenia based on my research data. Finally in Chapter 7, I give an
update on ETE and its relationship to the mental health and vocational
system. In Chapter 8, I conclude with a summary of findings and
implications for future research.
32
Chapter 2
Connecting the Dots – ETE, Me, and this Research
“Assisting people recovering from mental illness to achieve a lifetime of
successful employment” (Mission Statement of ETE)
How I Came to ETE
Internal Review Board for Human Subjects Research
The site for my research was an employment agency for people with
mental illness – Enrichment Through Employment (ETE). My route to ETE
was a circuitous one. After having my research approved by my dissertation
committee, I had to get approval from the Health Science Campus Internal
Review Board (HSC-IRB) for human subjects studies. I hadn’t really
anticipated how difficult that might be.
At my university, there were two campuses with two separate IRB’s.
The IRB on the main campus was responsible for approving research from all
the programs such as anthropology, sociology, education, etc. The IRB on
the health sciences campus was responsible for all the medical research. This
meant that the main campus IRB dealt with qualitative research proposals
frequently, and was quite familiar with this type of research. On the health
science campus, the research that was typically submitted to IRB was almost
all quantitative. Since the Occupational Science program was on the health
science campus, I was required to submit my proposal to this IRB. My
department was one of the few on the health sciences campus doing
33
qualitative research, thus the IRB wasn’t very familiar with this type of
research.
I submitted all the paperwork for the IRB process with a little
trepidation, but also with some hope that it might be approved quickly. I
wasn’t prepared for the first response from the HSC-IRB that came back with
many questions and concerns. The IRB committee was concerned about
several aspects of my research involving the potential risk to “subjects” as
they named the potential participants. They questioned the “hanging out
phase” of the research before enrolling participants, audio-taping interviews,
taking pictures of important objects related to meaningful
activities/occupations, and video-taping participants engaged in their favorite
occupations. About the “hanging out” phase they said “It appears coercive to
spend several months getting to know the people living in the study and then
trying to enroll them in the study” (IRB Response 6-19-03). Concerning the
audio-taping of the semi-structured interviews, video-taping favorite
activities, and taking pictures of important objects related to their favorite
occupations they said:
The literature review does not justify nor explain the effect video-
taping, voice recording, and taking photographs may have on these
subjects. This is very intrusive for an individual with schizophrenia.
(IRB Response 6-19-03)
I was quite taken aback both by the number and type of concerns.
There were twelve stipulations that I was required to address. Though I
could understand the need to prevent harm to any people involved as
34
participants in this research, I thought that the HSC-IRB didn’t understand
my methods. In the initial stage of ethnographic research there is a period of
“hanging out” at a research site and allowing the participants to get to know
the researcher as part of the methodology (Fetterman, 1998; MacClancy,
2002; Krefting, 1991). Audio-taping and video-taping interactions and
interviews are important tools used in ethnographic studies (Adler & Adler,
1994, Dewalt & DeWalt, 2002) that allow the interviewer to capture longer
passages of dialogue (Fetterman, 1998).
As I read their concerns, I wondered how audio-taping interviews or
video-taping them in their favorite activities, could be more invasive than
some of the quantitative medical research that I had read about. In
addressing these stipulations, I cited an example of a study that involved
video-taped interviews of 30 people with schizophrenia before and after
injecting them with apomorphine or a control substance (Ferrier, Johnstone
and Crow, 1984). To me, this certainly seemed more invasive than audio-
taping interviews or video-taping favorite activities. I hoped that the HSC-
IRB would be convinced as well. In other studies which I cited – both
quantitative (Kring & Neale, 1996), and qualitative (Dzurec, 1990; Laliberte-
Rudman, Yu, Scott, & Pajouhaudeh, 2000) - researchers video-taped and
audio-taped the research participants who had been diagnosed with
schizophrenia.
I also responded to their question of how spending time at a research
site “hanging out” and allowing the participants to get to know me and my
35
research might be coercive. I wondered how this period of allowing research
participants to get to know me as a researcher so that they might then be
comfortable enough to opt in or out of my research, could be considered
coercive. It seemed to me that a researcher who is unknown to research
participants, and perhaps represents an authority figure by being a medical
provider, or being in a hospital setting, would represent more risk of
coercion. I responded that the literature detailed related to the researcher
being an authority figure and having research participants respond with
whatever they think the researcher wants to hear (MacClancy, 2002). I also
described how qualitative researchers need to build relationships with their
research participants (Fetterman, 1998; Lawlor and Mattingly, 2001).
Though I had been surprised by some of the questions and concerns
raised by the HSC-IRB Committee, I would have never imagined that I
would have to respond to IRB questions/concerns three times, and that it
would take me a period of almost a year to get approval for my study. Each
time I received the IRB responses and read their concerns, I would get
discouraged. It would take me time to re-group and attempt to respond to
their questions again. The IRB continued to raise concerns about the
ethnographic that I was using. During time I was trying to get IRB approval,
someone working in the HSC-IRB office requested that our department do an
in-service for them. The woman making the request happened to be the
mother of a student in my department. She said that the people on the HSC-
IRB really didn’t understand qualitative methodology. The approval for my
36
study finally came after one of my professors – Dr. Gelya Frank – did a series
of in-services for the HSC-IRB committee members about qualitative
methods. In fact, Dr. Frank had heard of my difficulty getting approval from
the IRB committee and even tailored some of her examples to their concerns
about my research. When the final approval came from the IRB for my
study, one person on the committee still abstained from voting, citing
concerns about the validity of my methodology. I was relieved to have
finally gotten IRB approval, but frustrated that it had taken so long and been
so difficult. I was still amazed that ethnography and qualitative methods
seemed so foreign and questionable to the HSC-IRB, since this type of
research has been done in the social sciences for decades. In speaking with
someone who was part of the IRB on the main campus of my university
where they received submissions from students in the social sciences, I was
told that research using qualitative methods such as the ones I used was
commonly approved. Then, having finally gotten approval from the IRB to
proceed with my study, I had no idea that finding a site for the study would
also be difficult.
Finding a Site - a Supported Living Program
I had initially planned to do my research at a supported living
program for adults with mental illness. The program was a non-profit agency
intended to provide apartments and some support services for people with
37
serious mental illness. I had learned of the program through a professor in
my department – Deborah Pitts.
After making initial contact with the executive director of the
program, I explained my research proposal and my hope to conduct the
research at one of their apartment sites. I spent several months in written
correspondence, telephone calls, and emails with the director. There were
often delays while I awaited responses from her. Often she did not contact
me directly, but had a series of assistants contact me. I felt I was finally
making headway when she told me to meet with the consulting psychiatrist
for the program and one of the service providers to seek their approval. I sent
each of them a copy of my research protocol and arranged a meeting with
both of them. Over lunch we discussed my research protocol, and I answered
their questions. When both the service provider and consulting psychiatrist
told me that I had their approval to proceed, I was hopeful that I could begin
my research.
I contacted the director again about how to proceed. She informed me
through email that she had the final say in whether my research would be
approved, and she was still not sure. She then sent me a series of questions
and stipulations – about 15 in all. Some of them were fairly straightforward,
but some were much more involved. For example, one stipulation stated that
I must have frequent meetings with her and her staff to answer questions and
inform them of my research progress. I was also required to submit frequent
written reports of my research. I was concerned that both of these
38
requirements to report back to staff had the potential to make research
participants hesitant to talk freely about their experiences.
There were stipulations about not being able to meet with any of the
clients in their apartments or go off site with them to other activities. Since I
had specifically stated in my research protocol that I intended to observe the
research participants in their activities or occupations, not being able to
observe them doing these activities was a significant limitation. The only
activities I would have been able to see were the very limited activities
performed in the common space of the apartment lounge.
When I responded that some of the stipulations wouldn’t be a
problem, but some, like the reports and observation restrictions, would be
difficult, there was another lengthy period while she considered my response.
Though the approval process had been difficult, I was still hopeful that my
research would be approved. Finally, I received a call from the director while
I was vacationing with my family. I was sitting in a parking lot of a flea
market when I received the call on my cell phone. I was feeling apprehensive
about the director’s response by this point since the process had dragged on.
She began by telling me that her assistant was also on the line. I could only
suspect that this was intended to provide a buffer or witness, and so I felt
even more apprehensive. I didn’t think she would need a witness for good
news. Even though my dissertation committee, the HSC-IRB, and the
consulting psychiatrist at the supported living program, had approved my
39
protocol, the director told me that my research study was too risky for their
residents and thus she denied me permission to conduct it at their site.
I was really frustrated and angry about being turned down by the
director of the supported living program. I had felt sure that the approval of
my committee, and the rigor the IRB approval process would convince the
director of the supported living program that my research had been very
carefully scrutinized and would not be harmful to participants. I was
frustrated that I had lost several months of time, while spending tuition
money needlessly. Though I understood her need to make sure the residents
of their housing program would not be harmed by research, in this case I
thought the director’s decision was paternalistic. It seemed to me that she felt
the need to make decisions for adults that were legally competent to make
decisions for themselves about whether to participate in my study. This is an
attitude that I had encountered before, both from professionals who work
with people who have mental illness, and sometimes from the parents of
those who have mental illness.
After I was turned down by this program, I wondered if there was
something I could have done differently. I wondered if I had given the
director adequate information to understand my study. I thought perhaps I
might have picked up earlier on the possibility that I wouldn’t be allowed to
use this site. I wondered if I should have somehow given the director a
deadline by which I needed a decision. In retrospect, perhaps there wasn’t
40
much that I could have done differently because it was all part of the process
and learning about how to do research.
Finding a Site - ETE
I then began a new search for a site to do my research. I contacted
Deborah Pitts, the same professor in the Department of Occupational Science
and Therapy at USC who had earlier helped me find the supported living site.
She worked in mental health settings and I was hopeful that she might know
of another good site. She told me about ETE. I got in touch with the
Director, Bob (Bob is a pseudonym as are the names of all the staff at ETE),
and from the beginning, he was quite positive about my research project. It
was very refreshing after my experience at the supported living program. He
told me that ETE was a place that valued research and was always looking at
research to find best practices for their agency. He read through my protocol
and asked me some questions. Mostly, he asked about the qualitative
methods, since he was a psychologist and more familiar with quantitative
methods. I answered his questions and explained more about my research as
a collaborative ethnography. He also asked if I would be able to work with
clients to provide services while I was doing my research. I explained that I
wouldn’t be able to provide services while I was doing my research. He
asked me to attend a staff meeting and explain my research and answer any
questions that the staff had, which I did.
41
After a fairly short time, ETE gave their approval for me to conduct
my research project there. I asked Bob for a letter to the Health Sciences
Campus IRB, approving my research at ETE. He asked me to send him the
information that I needed in the letter, and then he sent me the letter (See
Appendix A). With this letter of approval from a research site, I received the
final approval from the IRB. I was finally able to begin my project at ETE in
November 2004.
In the next sections I will describe more about ETE – its physical
space, staffing, and philosophy. I will describe a case that ETE staff cited as
an example of how their program was different from other employment
programs. Then I will discuss issues that arose over funding. Finally I will
go into more detail about how I started conducting my research at ETE.
A View of ETE
Enrichment Through Employment is in a fairly large one-story brick
building – kind of like a small strip mall – except it appears to be an
industrial/business kind of area instead of retail. From the outside it is
like a little business office. It has a large front of glass. There is a
glass door with three panels of glass around it – one on each side of
the door and one on top of the door. The door has a simple sign that
says “Enrichment through Employment” with their logo “ΕT∃” - all
in black letters. Beneath this simple sign is the statement “No
Soliciting”. There are no other cues about the actual business that
goes on behind this doorway. The businesses on either side appear to
be quiet and somewhat industrial – related to cars and repairs…
(Field Note 11-23-04)
As described in the preceding field note I wrote from one of my first
visits to ETE, ETE’s exterior gave no hint to the business that it conducted.
42
Behind its non-descript office-front, ETE was assisting adults with mental
illness in finding employment, and quietly transforming lives. This agency
seemed distinct from other such organizations with which I was familiar. For
one thing, this non-profit employment agency for adults with severe and
persistent mental illness was started in 1988 from the volunteer efforts of a
few parents of adults with mental illness. In the beginning the parents held
garage sales, bake sales, and other fundraisers to start the agency. At a staff
meeting, I met Barbara, one of the founding parents, and a member of the
board. She was an older Caucasian woman with silvery hair, who seemed
pragmatic, determined, and caring. Though her son is now working and no
longer participates in ETE, Barbara has a strong presence at ETE, often
attending staff meetings.
Initially, ETE began with just $15,000 from the parents’ fundraisers.
According to Barbara, when the parents first envisioned ETE as an agency to
assist adults with severe and persistent mental illness in finding employment,
it was considered a radical idea. She said that, at the time the agency started,
people thought that adults with schizophrenia wouldn’t be able to work and
should just be supported by the disability system. She and the other parents
were convinced that their adult children could work and thus began the idea
for ETE.
Though ETE is located in a small town on the outskirts of a large city,
the clients come from a fairly large geographic area. Several of the clients
with whom I spoke, had found out about the agency through family or
43
friends, or were referred by a local mental health center. Some had
discovered ETE through an ad in the local paper.
ETE – The Physical Space and Staff
Bob, the director at the time I did my research, was a psychologist and
also ran his own employment agency. He was a later middle-aged Caucasian
man, with graying hair and beard. He spoke a bit softly at times, and tried to
be very calm, reasonable, and supportive, but could also be quite determined
and passionate. His office was the first one you encountered from the
reception area. This spoke both of his accessibility to clients, staff, and
families, and also to his centrality in ETE’s programming and success.
Bob said that when he became the director 5 years before I began my
research, they only had a few clients. His goal was to make ETE and
employment as accessible as possible. ETE streamlined procedures so that
clients only had to come in the door, provide a record of a diagnosis, and
state their desire to work. The agency eliminated much initial paperwork and
job readiness assessments that they had been using. Under Bob’s guidance,
the program moved away from a pre-vocational skill focus that included
groups for job readiness, preparing a resume, and interviewing to a rapid
employment model. According to Bob, the rapid employment model worked
on the assumption that clients learned best by receiving feedback in the real
world with support from staff, instead of through job simulations. The staff
worked to quickly move clients into employment – supporting the clients
44
through the process of finding, getting, and keeping a job. Using a rapid
employment model, ETE was more successful in helping their clients become
employed. Word spread about their success. According to Bob, the caseload
grew from less than 10 clients to about 80, with a waiting list of more than
130 people. At the time of my study, about 25% of their clients were
working. According to Bob, this was well beyond anything the local mental
health programs in the area had been able to accomplish. He told me that
other mental health programs in the area had success rates for employment in
the low single-digits.
From my observations, clues about how this program became so
successful were everywhere inside – from the ways in which the space was
arranged and decorated, to the people who worked there and how they did
their jobs.
One of the first things you notice as you enter the ETE offices –
starting in the receptionist’s area – are the certificates in frames that
run at about eye level in 3-4 rows all along the wall and even down
the hallway toward the other offices. These are certificates of
recognition for everyone who even works a few days – these are in a
kind of blue color. There are a few pink ones which are interspersed,
and these are recognition for 10 years on the job!
(Field Note 11-23-04)
These dozens and dozens of framed certificates spoke to the agency’s
success in finding jobs for clients. I heard clients and visitors to the agency
remark on the abundance and prominence of the certificates. Hanging the
certificates recognizing a clients success at obtaining a job alongside the
certificates for 10 years employment spoke of the way the agency valued
45
every client’s success. There was also a framed picture on one of the walls
that was actually done by one of my research participants. He talked about
how having his framed picture displayed made him feel valued.
The staff at ETE were also an important part of its success. Each day
the job coaches met with clients, helped them with resumes, applications and
calls to potential employers, went with them to interviews, and shadowed
clients in new jobs. Mark and Bobbie were the two job coaches and their
offices were on the right as you went down the hall.
Mark was a young man – probably in his mid to late twenties – who
told me his family was Filipino. He had black hair and usually wore dress
pants, white dress shirts and a tie. He smiled and laughed often, but could be
quite directive at times with clients. For example, when a client wanted to
quit a job because he felt frustrated, Mark told him that he just had to stick
with it as he reminded the client how the client had been able to push through
the frustration previously.
Bobbie was a later-middle-aged Caucasian woman who had blonde
hair, glasses, and usually dressed in suits, or skirts and blouses. She seemed
to enjoy talking, and could become quite passionate and animated. She was
quite supportive and encouraging with clients. I observed her interactions
with one client who was having difficulty getting help with buying her books.
Bobbie responded with support and encouraging words as she helped her
figure out how to get assistance from the school.
46
As you went past the job coaches’ offices, you encountered the office
for the part-time mental health case-manager, Kim. Kim was a young
Caucasian woman who was had graduated from a local university with a
degree in social work. She had long dark-brown hair, wore glasses, and
usually dressed in dress shirts and pants. She laughed often and made joking
and pointed comments. Once I observed her jokingly but seriously cajoling a
client not to let his worries get the better of him. Though I didn’t sit in on her
appointments, the clients said she was very supportive but also directive
when needed. One of my research participants found her to be the person he
trusted most to give him feedback and support about his concerns.
Together, the two job coaches, the mental health case manager, and
the director constituted the primary staff of ETE. The support staff were also
important in ETE’s success – the receptionist and the janitor. Both of them
contributed to the sense of ETE as a friendly and caring place. Both of them
were also mental health consumers.
Bonnie, the receptionist, sat behind the rather large “L” shaped
reception desk wearing a headset, and greeting everyone. She was a later-
middle-aged Caucasian woman with blonde hair, and was somewhat
heavyset. She was a welcoming presence and always had a friendly word, a
smile, and often a chuckle for people who interacted with her everyday.
What was not apparent, but she explained to me once, was that she was in the
process of recovery from mental illness herself.
47
As you walked through ETE’s offices, you usually encountered John,
the custodian, busily cleaning up. John was a middle-aged Caucasian man
who always dressed in khaki pants and shirt. He didn’t often speak unless
spoken to, but was always polite, friendly, and helpful when he responded.
Mark explained to me that John was also in the process of recovery from
mental illness.
ETE’s office space included a small kitchenette area in the back,
where staff and clients often grabbed a cup of coffee or a snack. In the very
back room of ETE’s space were computer cubicles along the wall where
clients could conduct their job searches. Next to the cubicles was a fairly big
sitting/meeting area with couches and chairs, and a large meeting table. (See
Appendix B for a diagram of ETE).
Having introduced the program, staff, and spaces of ETE, I will now
explain more about ETE’s program and philosophy.
ETE’s Program and Philosophy
Bob, ETE’s director, developed the program and philosophy under
which ETE operated during the time that I was there. He decided that ETE
was far from living into its potential when he became the director 5 years
before and found only a few people on the caseload. As a non-profit agency,
ETE wasn’t an official program of the mental health system so it didn’t have
a guaranteed referral base. The only way it could obtain more referrals was
with more success in finding jobs for clients. Bob was the one who decided
48
that ETE should remove all barriers for finding employment, so that all
someone with a mental illness had to do was come through the door desiring
to work. He implemented what he called the rapid employment model
described earlier in this chapter. Clients learn by doing actual job searches,
interviews, and work. Bob contrasted this model with what he described as
the rehabilitation model that involved simulations and job preparatory work,
before ever beginning to seek employment. Bob said he believed the rapid
employment model was effective because rehabilitating from a mental illness
was very difficult. Job success required motivation and rewards that come
from real work, not simulations. In a field note dated 1-20-05 from a staff
meeting I wrote:
Bob says that rehabilitation is a process that happens on the way.
People with MI [mental illness] get rehabilitation in the process of
applying for jobs and then later when getting jobs. Bob says the
rehab model is a model of preparing for going back to work and then
working and it doesn’t work for MI clients. According to him,
research shows that rehabilitation in the actual process works best for
MI…. He says that we don’t know why but he speculates that it is
because MI is very difficult rehab and needs a lot of motivation that
isn’t available in a classroom. An individual with MI goes through an
institutionalization process that may work in classrooms and job prep
but not in the real world. That is why real change happens in the real
world. Bob says it is even helpful to learn by getting fired if there is
good support. Bob says that the client is shaken out of their
institutional process by seeing reality. Then the job counselor can be
there to say it is okay and you can learn this and do it next time.
Bob’s experience running his own employment agency, led him to
believe that every client needed not just a job, but a career. ETE staff didn’t
just work to find clients jobs, but jobs that were meaningful, and allowed for
the possibility of advancement. Bob told the job coaches that it wasn’t
49
enough to just find the clients work, but that the clients deserved careers that
interested them. At meetings, the staff often discussed whether someone was
in a job that addressed their interests, and how they could help clients find a
career path. It was a very different type of discussion than I had heard about
from mental health clients I worked with in the past. Many patients I worked
with in the hospital would tell me how they were forced to take any job
available just to be employed. They described being encouraged by different
programs to take jobs, even if they weren’t interested in them.
At ETE, once the client found employment, the staff continued to
work with him/her for some time to ensure job stability and to help them find
career paths that would allow them to grow in their jobs. ETE staff worked
with clients both in finding the jobs, and keeping the jobs, because they had
funding from both the State Department of Rehabilitation and the County
Mental Health System. Initially clients were assigned to Mark’s and
Bobbie’s caseloads, for help in finding jobs. The staff time involved in
finding and keeping a job initially was funded by a contract with the State
Department of Rehabilitation. The staff worked to ensure a client’s job
stability for 90 days, and sometimes up to 180 days. In some particularly
challenging cases, the client was maintained on the employment caseload for
even longer. In these cases when the client was on their active caseload
longer, they tried to justify the rationale to the Department of Rehabilitation
for keeping them on the active caseload. They weren’t always successful.
50
When clients had achieved job stability for some period of time, they
were switched to Kim’s caseload for case management services. These
services were paid for through a contract with the Department of Mental
Health. Bob said that about 90% of their funding came from the Department
of Rehabilitation, and the other 10% from the Department of Mental Health.
This was because most of the intensive time spent with clients was in finding,
getting and keeping jobs. After they were able to maintain the job for a
period of time, they needed less intensive services and less time. Bob said,
however, that they did more case management with clients than what the
contract with the county mental health system reimbursed.
ETE’s philosophy also drew from the work of Caplan (Caplan,
Vinokur, Price, & van Ryn, 1989), a psychologist that did research on
employment. Caplan’s work was about how stress can inhibit someone’s
ability to obtain a job. He recommended that people be “inoculated” against
setbacks. In Caplan et al.’s (1989) research, people seeking jobs who
received help with problem solving and positive reinforcement had higher
earnings and job satisfaction once they found a job. In addition, he found
that those who were still unemployed had higher motivation to keep seeking
employment. At ETE, this research was applied by creating a list of
problem-solving questions, encouraging statements, and questions to help the
client cope with stress. This document was called “The ETE Good Service
Checklist” and the job coaches would use it as a guide when meeting with
clients (See Appendix C). This helped the job coaches focus on the progress
51
of clients, and encouraged the clients to think about their successes, and ways
to cope with setbacks.
Not everyone at ETE agreed with the new approaches Bob instituted,
and not everyone was always able to implement the new approaches. Mark
agreed with the philosophy of rapid employment, inoculation against
setbacks, and addressing careers and not just jobs. He used these approaches
most of the time. Sometimes he seemed a bit skeptical about helping clients
find careers in which they were interested if he thought their desires exceeded
their abilities. He did credit Bob with much of the agency’s success by
bringing in the new program emphasis.
Even though Bobbie had some philosophical differences with the idea
of rapid employment, she worked under this model, as well as the inoculation
against setbacks, and career finding. She had worked with the pre-vocational
focus that the agency had before Bob. Sometimes, in staff meetings, she
expressed her feelings that starting pre-vocational groups would be helpful
for clients. Bob continued to believe that these kinds of groups were not very
helpful and that the rapid employment model was the most effective. A few
times, this difference in views about the rapid employment model led to
Bobbie and Bob having rather heated disagreements over approaches during
staff meetings.
52
Despite their occasional disagreements, my impressions of the ETE
staff is that they operated more like a family. Here is an excerpt from an
early field note on 11-23-04:
Though the physical environment itself seems very business-like, the
atmosphere seems much less formal. The feeling I get from the staff
is very involved and somewhat intimate, yet very receptive. They
seem to know each other well. They are even comfortable enough to
disagree and have minor skirmishes in staff meetings, yet they seem
to respect each other, and mostly like each other.
ETE – A Different Kind of Agency demonstrated through one
Client’s Story
When asked about their program and what made it different from
other programs, staff at ETE often cited the following story of one of ETE’s
most challenging clients. The story illustrates many components of ETE’s
philosophy. A client in his 30’ had schizophrenia and came to ETE with his
parents. He was very disorganized and disheveled. He had great difficulty
with even simple everyday tasks such as bathing and dressing, yet he became
a client of ETE. After several months at ETE, he was finally able to get a job
working in a warehouse. He wasn’t able to get to work on time, and wasn’t
able to do the work. He was finally fired after being caught smoking on the
job in the warehouse. The staff said they thought he would never be able to
succeed on a job. Bob continued to believe that this client was employable
and encouraged the staff to keep working with him. After a few years of
working with ETE, he was finally able to get another job at a store. The staff
at the store were willing to work with the client. The client’s job was to
53
sweep the lobby of the store and monitor the bathrooms. Bobbie and Mark
worked alongside the client, shadowing him on the job. At first he couldn’t
follow-through with any of the tasks of his job without Bobbie or Mark
telling him what to do. He needed constant supervision.
The client was only working a couple of hours a day, 2-3 days a
week. The ETE staff shadowed him for a few months. He was still having
trouble doing the job without any prompting. The staff began to despair that
he would ever be able to do the job independently, but they continued to
work with him. Even Bob got involved in shadowing him on the job since it
required so much staff time. Finally after several months on the job, the
client began to do his work with less prompting. He began to bathe more
regularly and dress more neatly. After about a year, the client was finally
able to do his job independently. At the time I spoke to the staff, he had been
working for about two years.
This was a client upon who most agencies would have probably given
up, if they had even taken him as a client. He might have ended up in some
sort of sheltered workshop. I got to go on a jobsite visit with Mark to observe
the client. He was working and continued to do his job without help while
we were there. He even made an effort at small-talk with me.
This was a great story of success for the client and for ETE. It
demonstrated ETE’s philosophy in practice. It showed how ETE was willing
and able to work with clients whom other programs might not have
considered “ready” for employment and whom they might have kept in pre-
54
vocational programming indefinitely. This story illustrates the type of
commitment and resources that are needed to work with a client who was
significantly impaired from schizophrenia, and how ETE was able to provide
both. It also shows how the Rapid Employment Model was effective in
helping this man transform both his work and his life.
ETE - Funding
Toward the end of my research activities at ETE, a dispute over
funding issues arose. With the approach of contract renewal time (July
2005), ETE requested an increase in funding from the Department of
Rehabilitation and the Department of Mental Health. They had not received
an increase in 9 years and wanted to be able to give the staff a long-overdue
and well-deserved raise. The Department of Rehabilitation was providing
about 90% of ETE’s funding for helping clients find jobs and keep jobs for at
least 90 days. The Department of Rehabilitation said they could not increase
ETE’s contract funding since they were already funding the majority of
ETE’s services. The Department of Mental Health was providing about 10%
of ETE’s funding for clients who were just receiving case management at
ETE. Though ETE was providing quite a bit of case management, the
Department of Mental Health said they could not increase ETE’s funding
unless ETE changed their program. To get more funding from the
Department of Mental Health, ETE would have to become more of a mental
health program with a psychiatrist on staff to dispense medications, or more
55
of a mental health program that followed all aspects of client care such as
managing other appointments and counseling for mental health needs.
The board of ETE made the decision that they wanted to remain a
different type of program; they wanted to stay true to their mission as an
employment agency for adults with mental illness. For a few weeks, Bob,
the director, and Barbara, a member of the Board of Directors, met with
different representatives of the Department of Rehabilitation and the
Department of Mental Health to try and get the increased funding. They also
began to look for alternative funding from different granting agencies. Since
ETE had rejected the offer to continue the funding at current levels, the
contracts with the Department of Rehabilitation and the Department of
Mental Health were cancelled by the agencies. By mid-July 2005, ETE’s
funding ran out and they had to let their staff go. The staff members were
under the impression that ETE was closing its doors permanently. Several
weeks after ETE’s closing, I stopped by their offices and happened to catch
Bob there. He said the agency was keeping the current location and had
enough money to pay the rent for a while. He said they were continuing to
seek funding so that they could re-open at some point. I will discuss more
about ETE closing and the impact it had on the research participants in the
final chapter entitled “ETE Revisited.”
56
Getting Started at ETE
Conducting this Research
Even though Bob and the staff had been supportive of my conducting
research at ETE, it was clear that my research methods were not well
understood. The following excerpt is a description of the first staff meeting I
attended. It is taken from my first field note on November 18, 2004.
After I finished my introduction, the director began by asking me
some questions and then said he didn’t want to monopolize the
conversation so he started going around the room asking the others if
they had questions. They had a few questions but clearly the director
was the most focused on the research and asked the most questions.
He also has a Ph.D. and a research background so he is probably more
familiar with the process. Even he, though, was not very familiar
with the kind of qualitative research I was doing. He asked questions
about the “small numbers” of research participants and the
“hypothesis” I was testing. I think I was able to explain adequately
about the type of ethnography I am doing so that the staff has some
idea what the process is and why it is done that way.
After I had explained my research methods to the staff, I was ready to
proceed with the research. The only problem was that my research plans
reflected the fact that I had initially planned to conduct my research at a
supported living program. I had planned to hang out with residents in a
common area of the supported living apartments such as a dayroom, thus
allowing the residents to get to know me before trying to enroll them as
participants. At ETE, since they had changed the focus of the program from
pre-vocational issues to rapid employment, there were seldom groups of
clients for me to be able “hang out” with in common spaces. Mostly people
came just before their individual appointments, met with their job coach, and
57
then left. Sometimes someone would work on the computers on his/her own,
but this didn’t happen too often. This meant that the primary contact I had
with the clients at ETE was when I sat in on an appointment with him/her and
the job coaches - Bobbie and Mark. I didn’t really get much of a chance to
hang out informally with the clients, so that they could get to know me
outside of their appointments.
I spent several weeks sitting in on appointments with job coaches as
they met with clients, hanging out at the computer terminals with the few
clients who came in to work there, and attending staff meetings. These were
the ways I was able “hang out” in order to try to building relationships with
participants so they would feel comfortable enough to participate more fully
in the research. The staff was friendly and supportive, and frequently they or
Bob would ask me if I was getting all the information I needed or if they
could do something to help me in some way. Initially I divided my time
between Bobbie and Mark as they met with clients. As has been reported in
other research by occupational therapists turned occupational scientists, I
found it difficult at first just to listen and observe without interacting in a
therapeutic way to help “solve” client problems and without becoming part of
the staff (Lawlor, 2003; Cusick, 2001). The following is from the same field
note when I attended my first staff meeting on Nov. 18, 2004.
I found it difficult at times to just listen and not to participate and give
suggestions. I am so trained by my work and by inclination to do
problem-solving that this was a good experience in trying to just
understand and not problem-solve with them. I also found that I
wanted to be sensitive to them about taking down notes as they were
58
talking. I didn’t want them to be self-conscious that I was writing
down everything so I tried to take only very few notes.
After several visits to ETE and spending time with the staff and
clients in appointments and staff meetings and spending time there “hanging
out”, I began to feel comfortable being there. The staff and clients also
seemed to be more comfortable with me. As I began to feel more
comfortable at ETE, the relationships began to develop more. In a field note
from 1-4-05 I wrote:
Everyone seemed very welcoming today when I came in and [the staff
and clients] asked how my holidays had been. We all chatted briefly
about our holidays. It seems like I am becoming a regular fixture
here, which is important I think for the research. I feel like I am also
beginning to learn more about how things work here and what I
would like to know more about. At first it was a little overwhelming
and probably kind of awkward. Now it seems much more familiar
and comfortable.
Though the research process at ETE proceeded pretty smoothly for
the most part, there were points along the way at which I became
discouraged. As I had been “hanging out” at ETE for several weeks, the time
came to begin to think about enrolling participants in my study. As I talked
to Bob about enrolling participants, he suggested it was probably important to
discuss the need for any further approval with the Mental Health Department.
Because it took me over a year to get approval from IRB to conduct my
research and then over a year to get approval from a site in which to conduct
my research, I was somewhat nervous about any further approval processes
or hurdles. Fortunately for a person like me who was learning the research
59
process, there were some people who were quite reasonable and even
supportive. In a field note from 1-28-05 I wrote:
This week Bob told me that I should contact the MHC [Mental Health
Center] Contract Administrator about enrolling subjects in my
research. I was really worried that it would mean even more
approvals and delays. I had thought that my research wouldn’t
involve the MHC since I was looking at the client’s work [and not
their issues in case management for which the Mental Health Center
contract paid]. I thought clients who were looking for work were only
under the DOR [Department of Rehabilitation] contract. Bob had said
to speak to him about enrolling people and the MHC contract. That is
when he told me to check with this person. I called her with much
trepidation and dread. She was so very nice. I explained what I was
doing for my research and that I was a Ph.D. student from USC. She
asked if my proposal had been through IRB and I said yes. She said
she assumed that I had an Informed Consent Form and I said “yes”.
She said that all I needed to do was to put a copy of the Informed
Consent in the chart at ETE. She said anything I could do with this
research to help shine light on these issues would be nice and she was
sure people would like to talk to me and have someone interested in
their stories. I was so relieved and uplifted because she was so
practical and nice.
I was so relieved that my fears had not materialized in the form of yet
more requirements and hurdles to conducting my research. I was then ready
to begin recruiting participants. Since I had been unable to “hang out” with
clients informally due to the way the program was designed at ETE, I had
been unable to follow my plan to allow the clients to find out more about my
research in this kind of informal way outside of appointments. I had hoped
that by allowing the participants to opt in or out of my study in this informal
way as they learned about my research, they could reveal their diagnosis as
they self-select into the study on their own.
60
This self-selection process was important in my study since I had
developed my protocol with the assumption that clients would be able to
hang out with me, and decide if they wanted to reveal their diagnoses and be
in my research. By conducting my research in that way, I had been able to
say that the research would be exempt from Health Insurance Portability and
Accountability Act (HIPAA). This meant that I did not have access to
medical information such as client’s diagnosis. In order to follow this
protocol of being HIPAA exempt, the staff at ETE agreed to briefly describe
my study to the clients they were working with who met my criteria – over 30
years of age, with a diagnosis of schizophrenia, and without a legal guardian.
If the clients were interested in learning more about my study, the staff would
let me know and I would meet with them to provide further information, go
through informed consent, and enroll them in my study if they so chose.
I had met most of the clients before the enrollment period, when they
agreed to let me sit in on their employment appointments with Bobbie and
Mark. At ETE they had decided to divide the caseload by whether the clients
disclosed their diagnosis to their employers. Mark took the clients who did
disclose, and Bobbie took those who didn’t disclose. Only about 25% of
ETE’s clients disclosed their diagnosis to employers, with the majority
preferring to keep that information confidential for fear of discrimination.
The clients who disclosed their diagnosis though, tended to be the ones with
the more difficult diagnoses who required more support and accommodation,
such as clients with schizophrenia. Mark ended up with most of the clients
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with schizophrenia because his caseload consisted of the clients who had
chosen to disclose their diagnosis. As it turned out though, there weren’t that
many clients with schizophrenia at ETE. Some of the other diagnoses that
clients had at ETE included anxiety disorders, depression, bipolar disorder,
and schizoaffective disorder. Of the clients they did have with schizophrenia,
most were male. The few women who had schizophrenia on the ETE
caseload were either already employed and not currently receiving services,
or weren’t coming in for other reasons. That left only men with
schizophrenia on the active caseload as potential participants in my study. Of
the male clients with schizophrenia at ETE some were too young for my
study criteria and some had legal guardians, so that left only a few potential
participants.
Mark was very helpful in agreeing to ask his clients who met the
criteria for my study if they would like to meet with me to find out more
about the study. Mark referred the ones to me who wanted to meet with me,
and I met with each individually. As it happened, the first person who was
referred because he met the criteria for my study and was interested in it,
didn’t really believe he had schizophrenia and instead felt he was bipolar.
When he met with me and understood better that the study was about people
who had schizophrenia, he said he couldn’t be in the study. The next three
men who were referred to me each met the criteria, and each agreed to be in
my study – Lloyd, Frank, and Demetrius.
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I met with each participant to describe the process of my study –
hanging out with them in their appointments at ETE, and in other activities
outside of ETE. I went through the informed consent process with each of
them individually (See Appendix C for Informed Consent Form), and then
asked to meet with them again to allow them time to think about it. When we
met again, I asked them questions about the protocol to be sure they
understood it, and then asked them if they wanted to be in the study. Each of
the three men signed the informed consent and was enrolled in my study. In
the next chapter about the research process, I will describe some of my
experiences in the research process. I will also briefly introduce the three
participants and my relationship with each of them.
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Chapter 3
The Research Process
“Research is formalized curiosity.” (Hurston, 1996, p. 143)
Introduction
I have found the research process to be a space that allows for
curiosity. It allows for curiosity not just about the subject or people being
studied, but also about the researcher’s role in that process. In this chapter, I
will describe some of my process of learning to be a researcher, and relating
to the research participants in this study.
Before I began this research study for my dissertation, I had only done
a couple of research projects. Neither of them was anything comparable to
this dissertation in terms of scope, time commitment, or methodology. I had
done a very small study in a psychology class in my undergraduate work.
The project was a relatively straightforward quantitative study and lasted
only a couple of weeks. In my master’s program in occupational therapy I
had done a collaborative research study with a classmate. In that study, the
research was more involved but it also employed quantitative methods and
only lasted a few months.
My dissertation study is the biggest project I have ever undertaken.
My professors suggested that I begin exploring the topic for my dissertation
in papers I wrote for my doctoral classes. Since I took their advice, I have
been thinking about, writing about, and actively working on this dissertation
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study for the past 7 years. It has been a huge undertaking but also an
interesting process of learning more about becoming a researcher and
conducting a study of this type and scope.
In this chapter, I will describe my process of becoming a researcher. I
will discuss some of my challenges and achievements during the research
process. Next I will give a brief introduction to each of the three research
participants. After introducing each participant, I will describe my research
relationship with each of them.
Becoming a Researcher
There were many things, both about myself and my research
participants, that I learned while conducting this research. How could I keep
moving ahead on this research on days when I would get discouraged and
couldn’t even make myself take the few steps from the couch to my desk to
begin work? There were a couple of answers that seemed to work for me.
One strategy was to not think about doing the whole research project. I
would just think about the very next step. I would tell myself “all you have
to do is this one thing, and then if you don’t want to continue, you won’t.”
Another thing that was very helpful to me was having people who supported
me along the way – from my dissertation chair, to my husband, to my friends,
to my dissertation group, and to my extended family. On days when I felt
really discouraged, I would talk to some of my support people. Sometimes I
just talked to them about how I was feeling when I was frustrated or
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discouraged, or I would discuss ideas with them. At other times I would ask
them if they thought I would really be able to finish my dissertation. If I
needed to hear some specific words of encouragement, I would let them
know. For example, I might say “I don’t need advice. I just need you to tell
me that I can do it – that I can get it done.” The supportive people in my life
were very obliging, and provided support as needed.
Though the feedback I received was invaluable, too much of a good
thing can even become discouraging. The following passage is from an early
time in the research process when I was still mainly observing and “hanging
out” at ETE :
I met with my dissertation group. I had tried to print out field notes
for them and the printer was acting up so it took forever and kept
getting jammed. I was late to the meeting. When I got there I ended
up talking to them about my notes and they didn’t even really have
time to read them. I guess I should have sent them out in advance.
When I was talking about what I was seeing in my observations, some
in my dissertation group felt like I was focusing too much on the staff
at ETE and not enough on the clients. I explained that I can only
observe and hang out right now so I see and hear more from staff.
They said not to forget the focus of my study on the clients and it was
a good reminder. It also seemed though like they didn’t see the good
stuff in what I was doing. It was just too much. It is really difficult
doing research when you are learning and don’t quite know how to
proceed. It is even more difficult when you encounter problems after
years of trying to get moving on the research. At times like this I just
feel tired and overwhelmed. After getting some rest I felt better. I
just keep going. (Field Note on 1-28-05)
I continued to puzzle over and struggle with my role as a researcher,
even after a few months of conducting my research. As I became more
comfortable at ETE and with the clients, I was able to reflect about this
struggle to understand my role. In a field note dated 2-3-05 I wrote:
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I usually learn something new whenever I go to ETE. It is a very
warm and nurturing place where they really try to work with how to
help their clients and are always questioning assumptions. Sometimes
it is difficult not to start feeling like I am part of this place – maybe
that is part of doing ethnography – being both inside the place and
outside. If you are too outside you can’t be accepted and have people
be comfortable with you, and if you are too inside, you might lose the
ability to try and understand. I don’t know exactly how this should
work. I know when anthropologists used to go out into remote
cultures they would struggle with this. I remember reading about a
man who went to study a remote group in the Amazon and ended up
staying there and marrying a girl. I read that this is considered “going
native” and was something to avoid at all costs. Yet, it seems to me
that it is much more complex than just either/or. It is some kind of
dance to go inside and look deeply into something yet to continue to
have some ability to step back at times and puzzle and reflect.
As I continued to think about my role as a researcher, I began to see
the importance of the “hanging out” period of ethnographic research that is
discussed in the literature. Ethnographers usually begin by spending time in
a particular setting getting to know both the setting and the people who
inhabit it (Fetterman, 1998). In this way, the researcher can earn the trust and
respect of the participants and perhaps avoid the pitfall of being told what the
participants think the “authority figure” wants to hear (MacClancy, 2002).
Hanging out allowed me the opportunity to develop more of an identity as a
researcher before enrolling participants. It also allowed me the opportunity
to become comfortable with the staff and clients, and for them to become
comfortable with me.
Krefting (1991) in a discussion about rigor in qualitative research
described the importance of relationship building with the research
participants. She said:
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“This extended time period is important because as rapport increases,
informants may volunteer different and more sensitive information
than they do at the beginning of a research project. (pp. 217-218)”
As a researcher, I agreed with this need to build relationships that
allow for adequate understanding and data collection. I also felt though, that
this kind of relationship building was more than just a means to an end of
better data. In statements such as Krefting’s (1991) above, about the research
relationship, it sounds as though the only reason to build these relationships is
in order to get better information. To me building these relationships also
seemed important in its own right. Lawlor and Mattingly (2001) described
the importance of this relationship work relative to their ethnographic
research. They have conducted research over a long period of time with
African-American families who have children with a disability or illness.
They described how, in their work with the families, the relationships have
deepened as a natural part of sharing in the families’ struggles. This is
similar to my own experience. Because I wasn’t just a researcher in a lab
coat, but built real relationships with the people at ETE and the research
participants, I was able to better consider them and their needs and desires as
people. I wasn’t able to maintain a detached stance as a researcher, but came
to care for the people involved in the study. Lawlor and Mattingly (2001)
also described how in ethnographic studies in which the informants are
struggling and suffering, it is important to move beyond the “clinical gaze” of
neutrality and respond with a human face. Surely, this is how any human
endeavor, including research should be. It seems important not just try to
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“know” or “understand” the facts and theories, but to feel and relate to each
other’s lives and stories as fellow human beings.
The three men who agreed to be research participants in this study
came to have particular relationships with me. Each participated in the
research through interviews and by allowing me to become a participant-
observer in their worlds. I will discuss some of the importance and
challenges of these research relationships in the next section.
Research Relationships
I had a unique relationship with each of the three research participants
in this study. With each of them, I found myself enjoying our relationship.
For me though, it created an interesting dynamic to spend so much time with
the research participants while trying to determine the boundaries of what
constituted a research relationship. As was discussed earlier in this
manuscript, it is impossible to achieve the level of trust necessary to conduct
a qualitative study without building these relationships. Yet I found myself at
times wondering what the boundaries of that relationship should be with each
participant. As I spent time with the participants in interviews, learning
about their lives through their stories, it was impossible for me not to feel
some connection with them. Perhaps I also felt the pull of being involved in
their lives because of participant observations which took me into their
homes, work, and daily activities.
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Quantitative researchers collect and anayalyze data with as little
personal involvement as possible (Polkinghorne and Gribbons, 1998). Even
in classical ethnography expected the researcher to remain totally objective
and only represent what was being observed (Frank, 1977). This need for,
and even possibility of, being totally neutral was later called into question.
As critics called for more honest approaches to research, the researcher was
called on to try to understand and present his/her own situatedness in both a
lifeworld and in theoretical and historical traditions (Denzin & Lincoln,
1994). In addition, there was a call for reflexivity or examination of the
subjectivity of the researcher. This involved the researcher attempting to
understand how his/her own situatedness and responses could, and did,
influence the research (Marcus, 1994). These critiques of the “neutrality” of
the researcher led to a different understanding of relationship building in
ethnographic studies such as that described by Lawlor and Mattingly (2001).
Once the researcher accepts the importance of building a relationship
with the participants, the problem then becomes where to draw the line. As
the research develops and the relationship grows, what are the boundaries?
Clearly, partnering with participants to complete the research, is at the heart
qualitative research. Yet, in my experience, the relationships worked out
between me and each of the three participants were all a little different from
each other. In the next section, I will begin by first introducing the
participants. Then I will discuss the research relationship with each
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participant and how I struggled to determine the boundaries of each
relationship.
Demetrius – an Introduction
Demetrius was the name one of the research participants chose for his
pseudonym because of his interest in all things Greek. This was one of the
early and important themes that Demetrius discussed with me. In the first
interview, Demetrius described his involvement in the Greek Orthodox
Church as an important part of “what makes Demetrius tick” (Demetrius
Interview 3-14-05). Demetrius traced this interest in all things Greek back to
his days at a private university in Southern California. He said in the same
interview: “when I was at the university, it was basically a Greek culture,
the, uh, Greek Fraternities, and the uh, government was run by Greeks. And
so, um, I looked and did some research to find out that the New Testament
was originally written in Greek.”
Now that we have his name and its origin for the purposes of this
research, let me begin with a little introduction to Demetrius. He was a fifty-
something-year-old African American man who looked younger than his
years, and had a quiet easy demeanor, with a wonderful smile that lit up his
face when he became animated about something. He was soft-spoken and
had an easy chuckle that made you want to laugh along. Demetrius was
usually dressed in a long-sleeve dress shirt – usually starched, white, and un-
tucked, and wore dark dress pants, and dark dress shoes. He was of medium
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build and his hair was always neat, and cut short. He lived alone in a
condominium that his family owned. The condo was located in a small city
near the coast of Southern California. Though he lived alone, his mother
often brought him food she had cooked for him.
Demetrius and I Cross Paths at ETE
I first met Demetrius when he allowed me to sit in on an appointment
he had with Mark, his job coach at ETE, on 1-31-05. I had been shadowing
Mark and sitting in on appointments with clients who agreed I could observe.
Before Demetrius agreed to participate in this study, he had given permission
for me to attend a few appointments he had with Mark. When it came time to
begin enrolling clients in my study, Demetrius met the criteria – over 30, no
legal guardian, and having a diagnosis of schizophrenia. Mark told him
briefly about my study and asked him if was interested in meeting with me.
He agreed and we met on 3-8-05 so I could tell him more about my study.
My plans was to tell him about my study and then give him time to think
about it. He was more eager to start than I had anticipated. In a field note on
3-8-05 I wrote;
I spoke to Demetrius about my study and went through the informed
consent with him and asked him questions to make sure he understood
it. Then I was going to give him a week to think about it, but he said
he was ready to sign the informed consent already. He said he would
really like to be in the study and help me out with my research. He
even smiled, which wasn’t something I had seen him do much in the
job seeking process. He said he had attended the same university at
which I was enrolled during this study for a while. He had even
worked there part-time as a student. He seemed to be excited about
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being connected to the university again and also being able to help me.
He wanted to start right then with the interviews, but I told him I
wasn’t quite ready and we would start next time.
Since I met Demetrius at ETE, I wondered how Demetrius had come to be a
client there. He told me in an interview on 7-22-05.
D: The way I found this place, found, found ETE, was my mother, she
kept reading newspapers and she found the program.
S: Mm. She was looking for something for you or she was just
reading in general?
D: She was just, she was just glancing, reading in general, so she
found it.
So, because I had found this research site at ETE through a professor in my
department at USC, and because Demetrius mother just happened to be
reading the newspaper one day and found out about ETE, Demetrius and I
embarked on this research process together. I will now attempt to describe
the research relationship between Demetrius and me.
Demetrius’ Relationship with Me
Demetrius and I almost always met at places like ETE and the
Library, so that probably helped create a professional or academic
atmosphere. At times it almost seemed like we were students from two
different departments, occasionally discussing our individual work and
sometimes collaborating. I think the mutual background that each of us
shared as students at a private university – past or present – also contributed
to the collaborative academic atmosphere that appeared in some of the
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interviews. Obviously I had the advantage in time and position as the
“researcher” in learning about Demetrius’ work, but in addition to
participating in my research, he followed up with questions about my
dissertation progress. Demetrius was sharing with me about his work in
researching and trying to start an export business, but occasionally inquiring
or offering advice about my research process and project.
This educational focus became a point of alignment for Demetrius
and me. Demetrius was a serious student. He spent a lot of time studying the
things that interested him and that were important to achieving his goals. He
studied other people that he admired, and tried to learn what strategies they
had used that could be helpful to him. Demetrius often asked questions about
my progress as a student and researcher. He would sometimes tell me stories
about his time at the university. He would discuss things he had learned, or
we would share a joke, or he would offer me advice. This is from an
interview on 4-25-05:
D: How’s your project doing?
S: [Laughs] It’s coming along. Keeping going, keeping going. The
good thing about it is that it is, it is interesting, I get to talk to people
like you and the other people. I get to learn a lot, and I like that.
D: Are you gonna write a book?
S: I don’t know. I, first I just have to write the dissertation but, you
know it’s possible it could turn into a book one day, I dunno, it seems
like a lot of work though [laughs].
D: How many pages is a dissertation?
S: It varies, um. Some of them that I’ve looked at are 200, 300 pages.
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D: Yeah. ‘Bout the size of a book.
S: Yeah [laughs] but then, I guess it depends on, if you wrote a book,
what kind of book, because you know, a part of what you’re doing
when you’re writing is you’re writing to a specific audience that has
specific kind of, um, expectations and requirements. So for a
dissertation, it’s very kind of academic work. I mean you want it to be
interesting, and whatever, but you kinda have to fit some format. Um,
and I suppose there are books that are like that, but it seems like if
you wrote a book you’d want it to be kind of different and more
interesting and accessible to people, you know.
D: Well I did a project once on, on how people wrote books to
become the bestsellers, and got on, got on the bestseller’s book of the,
in the United States. And it’s nothing like, you know you take three to
five of the best sellers, and you do a correlation, find out what these
books have in common, and how they became bestsellers, and was it
in a certain way that they wrote, and a certain, certain, in terms of
popularity, and in terms of having an agent, you know. And, it was
interesting to see that you could, you could become a bestseller.
S: [Laughs] I don’t think many people do but yeah, I guess it’s always
possible.
As Demetrius and I met over the course of several months and I
continued to sit in on his appointments at ETE, I learned about things that are
important to him. I also learned not to underestimate him and his
involvement in things because of his quiet demeanor. If someone didn’t
know Demetrius and only made assumptions based on his quiet participation
in the employment process at ETE, and also on stereotypes about people with
mental illness, one might miss both the reality of the richness of Demetrius
life. Detail about his life will be described more fully in the next chapter. In
the next section I will introduce another research participant – Frank – and
describe the relationship between Frank and me.
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Frank – an Introduction
Frank was the name that another of the research participants in this
study chose for himself because it was the name of a cousin he grew up with
and considered to be like an older brother. Frank was always actively
creating his own recovery from mental illness. This often involved reading a
new book or re-reading a book in order to figure out how better to manage his
life. He talked to me in the first interview on 3-8-05 about some of his
reading at the time and what he had learned from it:
The book that I’m reading? It’s called QBQ! The question behind
the question….Well, like you could ask questions, uh…that are either
pessimistic, which are called, uh…which are called, uh, inferior
questions I choose, something like that, or you can call Q…ask QBQ
questions which are more optimistic ones, like instead of saying who
dropped the ball, you can ask – what can I do to make the company
better. It’s geared towards organizations but it can be applied to all
facets of life. The neat thing about it, is that in the end, it tells you
that what knowledge is important for change in you, and also to read
the book over again, once you read it once. It suggests re-read it,
which is what I thought I’d do and since it mentioned it, that even
reinforces it more….Life Management…..and, I uh….and, you know,
I, I can’t understand it but the author, who uh, who wrote the book,
his whole profession is that, to help, uh, organizations, businesses, be
more optimistic. I don’t know how he makes a living doing that, but
apparently that’s his job. And, uh I can’t figure it out, but, but it’s
interesting for me, you know that there are people, there are jobs out
there that are not mundane, that really affect people and you can get
paid for it, no matter how simple sounding it is. So, that was also
something that really, uh, inspired me.
Now that we have met Frank as he has chosen to be called, let me tell you a
little more about him.
He was a thirty-something Arabic man who wore wire-framed glasses
that emphasized a look of intensity, but with a nice smile that softened his
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look. I often saw him in his courtesy clerk uniform from the grocery store,
which consisted of dark pants and a tan print knit shirt. He was of average
height, had olive skin tone, and short, well-groomed dark hair. He often
worried about being somewhat stout. He spoke frequently about the books he
was reading, and the things he was thinking about. Frank lived with his
parents in a house near the coast.
Frank and I cross paths at ETE
I first met Frank on a site visit with Bobbie, his job coach from ETE.
In early January we went to his job site at a grocery store. He was working
as a courtesy clerk. With his permission, I accompanied Bobbie while she
did on-site job coaching with him. I later met him in his regular employment
appointment with Mark. Frank and I met about the possibility of being in my
study on 3-3-05. Since he met the criteria for my study, Mark had told Frank
briefly about my study and asked him if he wanted to meet with me about
possibly being in the study. I had only met Frank a couple of times before
and wasn’t sure how interested he would be in participating in the study. He
surprised me as is obvious from the field note of that meeting:
I had planned to go over the informed consent and give him a week to
think about it, but he was eager to participate and wanted to sign the
consent form right away. I asked him questions to make sure he
understood the study and he remarked that it seemed I had covered it
all in too much detail. I explained that it was required that I do the
informed consent like that. He actually asked me if we could start the
interviews now, but I told him I wasn’t quite ready to start today. He
told me that I should tell my instructor that it would take more than
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one time to really get to know and understand him. I told him we
would have several interviews. (Field Note 3-3-05)
Since we met through ETE, I wondered how Frank had come to be at ETE.
He explained the circumstances of his coming to ETE in an interview on 4-
26-05:
S: Well so then, I was trying to kind of trace the path of how you
ended up at ETE, so—
F: Oh, that. Because uh, my half-brother, I’d like to think of him as a
half-brother, uh, he looked it up in the newspaper.
S: Mm. So, so you hadn’t found a job at some point, you were looking
to find a way to get—
F: I was uh, lost in all kinds of hallucinations that brought me to
where I am today.
S: Hm. And so, he, what made him look up ETE? He was just…
F: He was just reading the newspaper.
S: He just found it.
F: Right.
S: By accident.
F: Right.
S: And so he told you about it.
F: Yeah.
S: So you decided to check it out.
F: Yeah. He told my parents about it, they checked it out.
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Like Demetrius, the happenstance of a family member, his “half-brother”
reading about ETE through an ad in the paper, led Frank to work with ETE.
Thus Frank and I met and embarked on this research journey together.
Frank’s Relationship with Me
As I mentioned previously, my relationship with each of the three
research participants was unique. Frank often kept an eye both on what we
were talking about, but also on how it might be received by my audience of
professors and peers. He was happy about the prospect of having an
audience for some of his ideas and work, although he was also writing his
own books. Perhaps because of his interest in having this outlet, my
relationship with Frank was something like a co-pilot at times on my
research. He helped keep me on track. He would help monitor our time
during the interviews. For example, he would say “Is it about time, because
we finished one side? [of the audio-tape I was recording on] (Frank Interview
3-29-05).” He also helped keep me on track with the progress of our
interviews with questions like “What percent of our discussion have we
completed?” (Frank Interview 3-29-05). He was very concerned with being
thorough and making sure we were getting it done correctly – sometimes I
thought he was even more concerned than I was. When we came together to
do an interview, he would sometimes have made notes about things he had
forgotten to tell me, or wanted to add. Several times he asked for feedback
about his participation in the research process with questions such as “so with
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everything that I’ve told you now and last time, does it seem like I covered
everything to answer your questions and whatever that’s relevant? Or, are we
lacking anything?” (Frank Interview 3-15-05). He was often quite insightful
about the research and the process: “Well, I was just wandering, after you go
through this, will your questions be more uh, will it help you, re, uh
formulate other questions from what, what you got here?” (Frank Interview
3-8-05). Thinking as a fellow writer, he once asked me about something he
had told me from a book he was reading “And I don’t know if you need any
quotes to back it up so it doesn’t sound like plagiarism,” (Frank Interview 3-
8-05). He also speculated about how this research would impact my life:
F: How is that all gonna help you when you want to, uh, approach a
problem in the future?
S: What will I take out of this research?
F: Yeah, when you wanna, when you’re approaching problems
further on down.
S: Well, like I think already, you know, I have the same experience
that you do, I think we all have this, um, need to see how are we alike,
and how are we different, and what can I learn? And one thing you
learn is that we’re all struggling with our own issues and that’s
helpful. Just like you said, you know, when you find somebody else
and you can relate to that, it’s like, wow, you know that’s really cool.
(Frank Interview 3-29-05)
Sometimes Frank would privilege me by telling me about specific
information that he was giving to me for this research. For example, when
we were talking about specific books he had read and what he had learned
from each, he said: “And that’s something that I won’t mention in my
writing. It would just be listed as books in the back, but it’s specially for
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you” (Frank Interview 3-8-05). Meaning, he wouldn’t include what he had
told me in the book he was writing, it was his gift to me for the dissertation I
was writing.
Frank provided so much information in his descriptions, and with
such a richness of connections between issues and with such complexity, that
I sometimes struggled to keep up with his ideas. I found it important at times
to try and summarize to Frank what I thought he had been telling me. He
would then agree, or clarify what he was saying. At times I worried that this
could cause me to put words into his mouth, but I found it to be necessary to
see if I was understanding what he was trying to tell me. This concern came
up in a dialogue between Frank and me about how long the transcript of a
previous interview had turned out to be, because he had wanted to use it for
his book. In this exchange I tried to clarify why I sometimes tried to
summarize what I thought he was saying to me:
F: And I’m kind of dismayed that you told me it came out to fifteen
pages, because how am I going to produce a summary for my
publisher [chuckles] if it’s all that lengthy? [S chuckles]. I, I couldn’t
have imagined it com…I thought it would come out to five pages.
S: Well, it’s fifteen pages, you have to think about, it’s a dialogue
between the two of us. So, it’s like, there’s, you say a few lines and
then there’s a space. And then I ask you something and then there’s a
space, and then you know…So there’s a lot of, it’s not like, if it were
condensed, it would probably be a lot less.
F: And then on top of that, you have to complete my incomplete
phrases.
S: No, I don’t complete your incomplete phrases, it’s just my
incomplete understanding. I’m just trying to, you know, better
understand what it is you’re saying. (Uh-hm). So that’s why I say it
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back to you, I’m trying to make sure I’m getting what you’re saying.
(Interview 3-15-05)
Frank sometimes related what he was reading to what we were discussing.
After Frank had been telling me about an interview he enjoyed reading
between Bill Moyers and Joseph Campbell, we had the following exchange:
S: No, no, that’s about all I have for today. I just want to thank you
again.
F: I feel like, uh, I’m Joseph Campbell and you’re Bill Moyers.
S: We’re having our own dialogue? It is, it is like that. That’s what
I’m saying, that I feel very privileged to be able to do this research.
It’s very, um, it’s amazing to me, that we sit and we have these
dialogues.
Thus I was able to have some access into Frank’s world and try to
learn from him and understand the richness of his life and thoughts. Next I
will introduce the third research participant – Lloyd, and discuss our
relationship.
Lloyd – An Introduction
After much discussion, “Lloyd” is the name another of the
participants in this research chose for himself. When I first asked Lloyd what
name he would like to select, he first suggested minor variations on his own
name. I told him that those variations might be a little too close to his real
name. Then he suggested “Forest Gump,” since he explained that some
people had once called him that. I suggested that it might be better not to use
a movie star’s name, but mostly I was concerned because I felt that the name
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might carry negative connotations that he did not deserve. Finally, he
suggested “Lloyd,” and said it was the name of one of his cousins.
Lloyd was a forty-something year old man with gray hair. He had the
kind of stocky similar to someone who did physical labor. He had in fact
worked off and on as a painter. When I met with him, he often wore work
pants or jeans and a t-shirt, or sometimes dressed in overalls. He had a broad
smile that came quickly to his face and lit up his eyes, but disappeared just as
quickly. He lived in a small city near the coast of Southern California in a
group home with about 30 residents. He shared a room with another
gentleman. Lloyd was pleasant and polite, though often a man of few words.
Lloyd and I Cross Paths at ETE
I first met Lloyd in a job counseling meeting with Mark on 1-11-05.
Lloyd and Mark talked about Lloyd’s desire to paint houses and whether he
could return to that work due to problems with his knees. Mark also talked to
Lloyd about the trouble he was having in verifying Lloyd’s past employment.
When I began to enroll participants in my study, Mark determined
that Lloyd met the criteria I had described for my study. On 3-3-05, after I
sat in with Mark and Lloyd in another job counseling meeting, I left the room
and Mark asked Lloyd if he was interested in talking to me about being a
participant in my research. Lloyd agreed so he and I met and I explained the
research to him and went through the informed consent process. Lloyd asked
if I could pay him and I explained that I couldn’t. He agreed to be in the
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study and signed the informed consent. Afterwards, he asked me for gas
money for his van. Although I wanted to help him, I felt as though I couldn’t
because of the research parameters in which I had stated that I wouldn’t be
paying the participants.
During our first interview I asked Lloyd to describe how he came to
ETE.
S: And, um, how did you come to find out about ETE?
L: Uh, Brother Dan. The pastor, Dan, at Trinity Church.
S: How did be know about it?
L: Uh, he was told from Frank Smith, the senior pastor.
S: And they just mentioned it to you?
L: Yes, a long, long time ago. They mentioned it.
S: How long have you been going there?
L: ETE, about 5 years now, something like that I think.
Thus, my research relationship with Lloyd began.
Lloyd’s Relationship with Me
I’m not quite sure how to characterize my relationship with Lloyd.
The meetings and interviews were pleasant, but sometimes challenging.
Sometimes he would initiate the conversation and ask my opinions, but often
his answers were brief, or he kept coming back to an issue that he was really
focused on that day. Lloyd also kept me on my toes about the research
relationship by asking me for help with problems he was having with job
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services or finances. It made perfect sense to me that he would ask me for
help, since I was asking about his problems and seemed to have some sort of
training that had given me professional standing at ETE. I was sometimes
frustrated by this research process that allowed me to have access to Lloyd
and listen to his problems, but not be able to help him directly. I understood
that I couldn’t “practice occupational therapy” since I wasn’t in that sort of
position. I also understood that research is a different kind of helping. I
continued, however, to find it difficult and contrary to my training just to
listen, or refer him back to people who were the designated “helpers.” This is
illustrated in an interview on 3-10-05:
L: Do you uh, know where I could get a good deal on a cell-phone
because that’s, Mark’s thinking about that I need to have a cell-phone
that has, uh. Do you have the internet on your phone and everything,
or just the basics?
S: Just the basics.
L: He said I could buy just the basics for $5 a month but I don’t know
where to get it.
S: Yeah. He’s gonna, I think he’s gonna help you look into that,
remember.
L: He said he was going to help me look into a cell-phone. Why
don’t you remind him again because I really need one.
S: You can remind him.
Another time on 5-4-05 the issue came up again and I fumbled with
what to say to him:
L: Here’s the number of guy that, you can call and tell him I’d like to
work for him some more.
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S: Well that’s kind of Mark’s stuff, I’m just, I’m just here to kind of
talk to you and, and, and so you can help me understand what it’s like
for you but Mark can help you, you know, actually find a job. Um,
…sorry about that, um.
Since having enough money was a continuing struggle for Lloyd, it
continued to come up during our time together. I continued to feel for all
three participants as they struggled with financial issues. I often had to
decline helping Lloyd out with money, since I had written into my protocol
that I wouldn’t be paying the participants. Without the funding to be able to
offer the money as compensation for his time, I also felt that it was too much
of a power issue to have him needing to ask me for money. I tried to
compensate by occasionally treating him to lunch when we were meeting
over a meal. I also continued to suggest that he address the financial issues
with the counselors and agencies who were working with him since that was
their area of expertise. Sometimes though, since I suggested he ask for help
from the agencies with whom he was working, Lloyd would want me to call
them and talk to them. I had to remind him that I was only working as a
student doing a research project, and was not in an official capacity to be able
to work like that. When he said he didn’t have money for the pay phone to
call them, I did let him call on my cell phone.
Besides financial issues, another area in my relationship with Lloyd
was a bit tricky. I noticed that sometimes some of the facts in Lloyd’s stories
seemed to shift. At first I found this difficult and wondered what the “true”
story was. Eventually I decided that this concern was my issue, and not
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Lloyd’s. I decided what mattered was trying to understand Lloyd’s issues
and concerns as he shared them with me each time, no matter what form that
took. This was not an easy thing for me as someone who sometimes obsesses
over details and facts. Again, I had to learn to live with my issue and meet
Lloyd just as he was and for who he was. He was just living his life and
sharing his stories, experiences, and perceptions with me.
When I relaxed more and just took Lloyd on his terms, we had good
conversations. This was a pleasant interaction in the car on the way to lunch
for an interview on 7-7-05 in which there was not a pressured agenda from
me:
S: That’s a pretty color for a car, I always kinda liked that.. black-
blue.
L: I like blue in everything, my favorite color overall for everything.
Blue. What’s your favorite color overall for everything?
S: Yeah, blue pretty much. I like bright colors too though, you know,
different—
L: I like blue because it’s a bright color too and it’s a color of itself
where you feel secure compared to everything else and separated
from the herd. That’s why I like it. Blue snowcones, blue, oh
everything, stuff like that.
S: [distant talking]
L: What’s your second, guess what my second most favorite color is
when it comes to the energetic ones, nightclubs and all that. Dancing.
Guess what my second favorite color is I like a lot. Guess.
S: I dunno.
L: Take two guesses.
S: Mm, yellow.
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L: No.
S: Uh, red.
L: Yes, red.
S: [laughs] A good color.
So I was able to find ways to deal with my own issues of “truth”
while getting to know Lloyd and all the richness of his life and thoughts that
he shared with me. It was a good lesson and made it possible to have good
conversations by my not having to impose such a rigid agenda.
From each of the three research participants I learned much – some of
the learnings were similar, and some were unique to each participant. I am
grateful for all of it. I feel the weight of the responsibility of being in a
relationship with these three men as I try in the following chapter, to write
each of their stories.
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Chapter 4
The Three Research Participants
The universe is made of stories, not of atoms. (Rukeyser, 1996)
Introduction
In this chapter I will tell the stories of the three participants. It is with
some trepidation that I undertake the task of telling these stories since I feel it
is like a sacred trust for these men to have shared their lives and stories with
me in the hopes of contributing to some worthwhile results and
understanding. I will begin by briefly describing the process by which I went
about constructing these stories.
During the course of seven months in which I was actively conducting
interviews with them from March 2005 through September 2005, these three
men shared their lives, activities, stories, and feelings with me. I conducted
semi-structured interviews with each participant at least six times during the
course of seven months in various locations such as their homes, at ETE, at
restaurants, or with one participant at the public library. I also spent time
with the participants in their daily activities – attending appointments with
them at ETE, going to their work, sitting with them at the library, visiting
their churches and homes. Since it was a collaborative ethnography, I
continued to maintain contact with the participants and had a few brief
interviews, during the course of constructing the manuscript over the next
year and a half. During that time, I conducted the analysis of the interviews.
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I read and re-read the interviews and coded them by themes that emerged
such as “role-models of hopes” or “making meaning through occupations.”
As I worked on the analysis, I struggled with how to construct each man’s
story. I finally realized that since I was an occupational scientist, and had
developed the research questions and interview questions focused on
occupation, I named each participant’s story as an “occupational story.”
During the course of our interviews, I had gathered information about each
man’s life through the occupations in which he had participated, the ones he
particularly enjoyed, or the ones in which he hoped to participate. In these
occupational stories, I focused on their hopes, their experiences with
schizophrenia, and interactions with employment services and the mental
health system through the lens of occupation. After I had constructed each
man’s occupational story, I gave it to him to read. Demetrius read his story
and offered only a few factual corrections. Frank took his story and said he
would use it to help him with the books he was writing. Lloyd took his story
and mentioned the possibility of being able to sell it to make some money. I
explained to him that it was the story I would be using for my dissertation
and that selling it wasn’t such a good idea. I don’t think he actually read his
story.
Since the three participants have had the opportunity to read what I
have written about them and none of them had much feedback, I hope that
this is an indication that I have at least presented their stories in a way that
was acceptable to them. What follows, though far from the complete story of
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each participant’s life or even of all of the information that was
communicated in the interviews, is my attempt to tell the story of each
participant’s hopes, struggles, and pathway in life through his occupations.
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Demetrius’ Occupational Story: “What Makes Demetrius Tick is
Basically, um Religion”
Introduction
There were two prominent themes running throughout Demetrius’
occupational story - his hope to work in healthcare, and his hope to own his
own exporting company. The foundation which supported both of these
hopes, was Demetrius involvement in religion and church. Let me begin by
giving an overview of his desire to work in healthcare. He described how
even in high school he thought he would become a physician. As he
continued to move through life, this desire was shaped by different forces, yet
he remained interested in healthcare. At one point in college, he thought
about working in the business of healthcare. When he joined the Greek
Orthodox Church, he took Saint Luke as his patron saint, because Luke was a
physician. When he ended up working to restructure an importing company
into an exporting company, he became interested in exporting healthcare
equipment. This desire to work in healthcare became an overarching hope
which guided many of Demetrius’ decisions.
Embedded within his desire to work in healthcare was also a desire to
own his own exporting company. He had studied business and earned a
business degree in college. As part of his studies, he had also researched
what made people successful in business. After college he and some friends
decided to start an importing company. They ran the company successfully
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for several years. Later Demetrius decided that he should be working in
exporting in order to help with the national deficit, therefore he wanted to
own his own exporting company. He spent much time researching how to
start this exporting company.
Supporting these desires to work in healthcare and own his own
exporting company were Demetrius religious beliefs and practices. During
college he became interested in “all things Greek.“ This led him to explore
and later in life to join the Greek Orthodox Church. Demetrius described the
church and religion as occupying a central role in his life. As a young man
he had been a Baptist. When he converted to Seventh Day Adventist, in line
with the precepts of this religion, he became a lifelong vegetarian. When he
joined the Greek Orthodox Church, he became a follower of St. Luke. He
spent quite a bit of time at the church and said much of his social life was
through the church. He attended services regularly, volunteered in the
church’s bookstore, and helped with special activities, such as the Greek
Festival, each year. He described the church and his religious practices and
beliefs as central to his ability to maintain his hopes.
I will begin Demetrius’ story by describing how his desire to work in
healthcare organized many of his occupational choices, beginning in high
school. Then I will discuss his occupations across his lifetime up to the time
of this research. I will particularly highlight some of his involvement with
the church and will also describe his experiences with schizophrenia, the
mental health system, and the vocational system. I will end by discussing
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Demetrius’ hopes for the future, critics of his hopes, and how he managed
these critics. As much as possible, in order to catch the richness and nuances
of Demetrius’ ideas and to accurately represent his thinking, I have included
Demetrius own words as transcribed from interviews we did together.
High School
“I wanted to be a Physician in High School”
When Demetrius was in high school, he thought about becoming a
physician. Even during his high school years, he experienced challenges to
this hope. He stated:
Well I didn’t—first of all, my, when I, I wanted to be a physician in
high school, but the high school I went to didn’t have a physician
program, or physician club, to gear students into that field, so I wasn’t
aware of certain high GPA was supposed to be maintained, and a
certain score on SAT was supposed to be maintained...So that was, I
didn’t find that out until my senior year…By that time, you know, it
was kind of late. So I said well, I’ll have to do the second best thing,
what other choices do I have? The other choices were engineering,
business, and so I looked and I said well, um, I really didn’t know
what I wanted, but I knew that um, it was going to be close to the
health care industry. (Demetrius Interview 4-25-05)
So, Demetrius’ goal of working as a physician began to be shaped by
educational policies that didn’t provide adequate advising to him about his
career goals. He continued to hope that he could somehow be involved in the
medical field. He first attended a public university for a year, and then spent
a year at another college before transferring to a private university.
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College
“I Never Did Really Get to the Medical Field”
When he began his studies at the private university, he had planned to
study business law and also take classes in the medical field. He soon
encountered another obstacle. He said:
Well, that was fine and good, but I never did really get to the medical
field because my school was located, the school is split in
half…Where you have the undergraduate campus, located at, um,
Hoover and ‘round there Figueroa…Where the medical campus is
way across town.
(Demetrius Interview 4-25-05)
So, because the university’s primary campus was located in one part
of town while the medical campus was several miles away in another part of
town, Demetrius found it difficult to take classes on both campuses. So once
again his hopes were shifted. Demetrius decided to continue in the
university’s school of business. He seemed to feel he could make the
connections between business and his early interest in the medical field.
“What makes Demetrius tick is basically, um religion”
Another thing that shaped his path towards his hopes was his
encounter with the Greek system at the university. He had always had a
strong interest in religion; but because of the Greek system at the school, he
was influenced to change his religion to the Greek Orthodox Church. He told
me:
What makes Demetrius tick is basically, um, religion. I’m a Greek
Orthodox, but before that I was a Baptist for about 15 or 20 years.
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Then I was a Seventh-Day Adventist and became a vegetarian for
about 8 years; then I became a Greek Orthodox for…almost 18,
almost 15 years…. And we, the way I found out about the church is
when I was at the university, it was basically a Greek culture, the, uh,
Greek Fraternities, and the uh, government was run by Greeks. And
so, um, I looked and did some research to find out that the New
Testament was originally written in Greek, and so I uh, looked up in
the yellow pages at that time, if there was any churches or cathedrals
that were Greek. And that’s how I found the Greek Orthodox Church,
Greek Orthodox Cathedral. (Demetrius Interview 3-14-05)
The Greek Orthodox Church continued to play an important role in
Demetrius’ life. As he states in the following quote, he credits the church
with shaping his personality, as well as being the place where he did most of
his socializing:
They say that I have a mild attitude, a mild personality and it’s
probably because of my religious studies… that I go to church every
Sunday religiously. And um, I’m always reading the Bible, and I, I
listen to the sermons. So, uh, that’s basically my social life is
basically the church. If I have any social life as far as going to any
events or any type of parties, it has to do with the Greek Orthodox
Church, or Cathedral. (Demetrius Interview 3-14-05)
Demetrius also volunteered in the bookstore at his Greek Orthodox
Church for a couple of hours after the Sunday services. He invited me to
come and see him working in the bookstore, and I once bserved him there
working. He showed me around the bookstore and seemed proud of his role
there. He seemed very comfortable and the people seemed to respect him.
He seemed to enjoy the work, and the other people from the church who were
working in the bookstore told me they appreciated his work as they interacted
with me. Thus his participation in the Greek Orthodox church that began in
college continued through the time of this research.
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In the meantime, while still studying at the university, Demetrius
began to face financial obstacles, since getting an education at a private
college can be very expensive. He decided that leaving college and going
into the military could be a way to get the rest of his college financed.
Leaving College
“I had duty to myself and our country to serve in the Military”
Demetrius left college to join the military service. He entered the Air
Force, and hoped to become a pilot. He stated:
And I went before my age elapsed to go into the service. I went into
the Air Force and got the GI Bill. I got orders to North Dakota…in
about 1977 to ’78. And then I got orders to Great Britain, England,
LakenHeath Royal Air Force Base. (Demetrius Interview 3-14-05)
Yet again, Demetrius’ hopes for finishing school and working in a field
related to healthcare were shaped by external forces. Both his sense of
patriotic duty and the reality of financial constraints in finishing college led
him to defer his education and vocational hopes by joining the military.
Demetrius is Diagnosed with Schizophrenia
“They said it was a mild case of schizophrenia”
While Demetrius was serving in the Air Force, he ended up being
stationed in England. While there, he had fallen in love with a woman who
was a nurse and they had thought about getting married. When the woman
became sick and died, her death precipitated a crisis in Demetrius’ life.
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Well, it started, um, um, with a girl that, when I was overseas in
England, and what happened was, she was from the United States,
and she came down with some kind of disease, and, she was my, my
girlfriend. And I remember I was driving a truck or a bus or
something, and so I picked her up, and then um, she became very ill,
so I took her to hospital on Base in England, Lakenheath Royal,
Royal Air force Base…. And uh, she expired, she died. So that was a
big influence. So, you know, when somebody, when you have a death
in the family or somebody that you love dies, it can be devastating.
(Demetrius Interview 5-9-05)
I asked him what happened after his girlfriend’s death. He further explained.
D: Well, I was very sad that she died. And think I was playing a game
of football, broke a finger. And I had to get that, I remember I broke a
finger, I had to get a cast on my arm, for the whole thing, they had to
put a cast all up to my arm for a broken finger. And, well, things
weren’t very good for me; it was the worst part of my time that I had
in the Air Force. So things that I thought about were very sad
thoughts.
S: Did you notice something was wrong and that’s why you went to
get help, or—
D: Yeah, yeah, I couldn’t function, I couldn’t work on my job.
Constantly thinking about it. … (Demetrius Interview 5-9-05)
From what he told me it seemed that Demetrius had an episode of
paranoia at the time his girlfriend died, and he was subsequently diagnosed
with schizophrenia. He explains what he was feeling at the time he was
diagnosed:
I remember my therapist used to ask me, do I feel a conspiracy
against me. One time I had an episode like that, but it was about the
time when the girl died. That they’re against me. But I haven’t had
any episodes since then. (Demetrius Interview 5-9-05)
Demetrius explained how he was diagnosed with schizophrenia.
And so um, so I was thinking about marrying her. And so, after she
died I went to the funeral. Things weren’t the same. And so I went in
for a check-up, a check, you know, a consul--, a psychological
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counseling. And so then they found from blood tests, I think it was,
that I had a chemical imbalance. And so um, said I had a chemical
imbalance, and they said it was a mild case of schizophrenia. So um,
well my time in England was up, so they sent me back to the States, in
San Francisco. So I was going through medical observation.
(Demetrius Interview 5-9-05)
At the time, Demetrius hadn’t really understood this diagnosis, so he tried to
find out more about it by looking it up. He also decided to see a private
doctor about the diagnosis when he was back in the U.S. The doctor
explained more about schizophrenia to him, but he still seemed unconvinced
that this was his diagnosis, since his symptoms were different.
S: And what did you think about after they told you that, about
schizophrenia?
D: Well I didn’t know what it was. I looked it up in the dictionary,
and then um, … uh, when I went to United States, came back home, I
went to a private doctor, and they were trying to describe what
schizophrenia was but, you supposedly hear voices and see things that
are not there, but I didn’t have any of those symptoms. So they said it
was mild, so I was basically trying to find out what it was all about.
S: You found out any more?
D: Well yeah, I saw some programs on some people who had acute,
acute schizophrenia where, uh, they’re in prison, prisons and jails.
They’re hollering and screaming. And uh, they’re talking to invisible
people, to everybody else they’re invisible, but to them the person’s
real, like I’m talking to you. But somebody came in and they were
just the empty chair, it’s like that. But I never really experienced any
of those things, but I kinda understood what it was, what it was like.
S: What do you think about it now?
D: It’s just strange. (Demetrius Interview 5-9-05)
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I asked Demetrius if he had any specific symptoms. He described his
symptoms and how his concern about having schizophrenia led him to
abandon his plans for becoming a pilot in the Air Force.
S: Do you ever have problems still with it? Do you take medication?
D: I take medication.
S: Do you have any other symptoms or anything?
D: No, just anxiety and doing things too fast. Um, or rush, rush to do
things, make mistakes.
S: Um, have, do you feel like that that’s made much impact on your
life, having that diagnosis?
D: No I just learn to live, live with it. Um… I try to be, I try to take
my time now, instead of being so anxious to get things done.
S: Mm.
D: So it influences, influenced my um, my rate of reacting to
situations. You know, like for instance, it’s like, we’re sitting here and
someone hollers fire, and you know you just immediately get up,
jump, jump up and run out of the door, and, and you forget to take
things with you. Well, I would pro—that’s, that’s anxiety…Um, you
have that perceptively, you have to think calmly, in, in situations like
fire, and um, it, it influenced me when I was flying airplanes, little
Cessna airplanes, I was a student pilot in the Air Force, and um, I was
flying these little planes, and so um, I stopped flying because of that,
cuz it was dangerous, I said well maybe something, maybe something
will go wrong. You know, end up crashing… So I stopped flying
because of it. I could still have gotten my license and everything, but I
didn’t want to.
(Demetrius Interview 5-9-05)
In summary, while serving in the Air Force, Demetrius found a
girlfriend and was almost married, but he ended up bereft when she died of a
sudden illness. This loss of his girlfriend precipitated a crisis that led to his
being diagnosed with schizophrenia. Demetrius had questions about this
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diagnosis, but seemed to have made his peace both with the diagnosis and
with the fact he just needed to slow down and take his medication. He did
end up deciding not to finish his pilot training and left the military because of
his diagnosis.
Returning to College
“It was 10 years late that I got my degree, from, from the original
schedule”
After leaving the military, Demetrius did get benefits from the GI Bill
in order to return to school. He told me he realized that he didn’t need to
return to the expense of a private school. He said:
And so um, when I went to England, it brought to my attention that it
doesn’t make a difference what school you graduate from as long as
you graduate from a school. So I said well, I’ll, I’ll finish up where I
left off, at Cal State where I first got accepted. And so I, I went back
to Cal State, got my degree in business administration.
(Demetrius Interview 4-24-05).
Overall, it took Demetrius about 10 years to complete his BS degree
because of changing schools, going part-time, and performing military
service.
Now according to schedule I graduated from high school in ’69. I
was supposed to have my degree in ’73, but with the advent of going
into the service, I ended up getting my degree in ’83. So, it was 10
years later, so I had to pre, I had to be persistent and not give up, even
though it was 10 years late that I got my degree, from, from the
original schedule. (Demetrius Interview 3-14-05)
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Demetrius took a lot of pride in the fact that he was a college graduate
from one of the California public universities with a Bachelor of Science in
Business Administration/Finance. He spoke once in an interview about what
his degree meant to him.
Oh yeah, well, the degree. The business degree. You don’t need a
de…, a business degree to run a business, to be a entrepreneur,
especially in the United States. But if you do have a degree, it gives
you a, a added advantage, because you understand marketing,
management, computer, quantitative analysis…And um…personnel
management. So it makes it a little easier to believe in yourself, that
you can do it, when you have a degree. (Demetrius 3-14-05)
Thus, with some persistence, Demetrius was able to finish his degree. He felt
proud of his degree and it gave him confidence. Having finished his degree,
he began to think about going to work.
Going to Work
“Um, basically the things I enjoy doing most would be, the
research for my export company”
After getting his business degree, Demetrius went to work as a consultant.
He was able to use his business degree to open doors in consulting with
others who were trying to start their own businesses.
I was a business consultant and to make ends meet as they say, I had
clients. And I would help them start their own business and I would
give them, uh, advice, consultation, and they would give me a little
fee for that. And since I had a degree in Business Administration they
trusted my advice a little more. (Demetrius Interview 3-14-05).
Eventually Demetrius went into business with a few friends. They
started a company together to import furniture. Demetrius says of the
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company: “I mean, we’d take furniture that was made in Taiwan and we
would market it in the United States, and we would make a nice commission”
(Demetrius Interview 3-14-05). These friends stayed in business together
until one of them decided to leave the business and become a minister. At
that point, Demetrius decided to turn the company into an exporting
company. Since he had earlier been a partner in an import company, I asked
Demetrius why he wanted to start an export company. He responded:
Well, basically, I’ve always been patriotic and in the Air Force; it’s
duty to God and country. And there’s a problem with the United
States deficit of payments. It was basically that we’re doing too much
importing versus exporting, and the more exporting the United States
does, which means products in the United States to be sold to other
countries, it causes our deficit of payments to go down, which is the
ideal situation. And so, um, since our deficit payments is too high, we
do too much importing, it was, I took it upon myself as far as duty to
country to…try to alleviate the problem by exporting products made
in the USA to different countries like Australia, and India, Africa,
Mexico, China. (Demetrius Interview 3-14-05)
Demetrius once again responded to the pull of doing his patriotic
duty. Instead of military service, his response was to help alleviate our
national deficit by trying to change his company from an importing company
to an exporting company. He was able to reframe his hope of working in the
medical field by directing his exporting business ideas toward the medical
field. “Since we we’re doing exporting, um, something like hospital
administration, it’s medical administration, it’s um, selling medical products,
medical equipment supplies” (Demetrius Interview 5-9-05).
This desire to own his own exporting company was something more
than just a job quest for Demetrius. It was related to his long held hope of
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being an entrepreneur. I had asked Demetrius in the first interview (3-14-05)
what he enjoyed doing most and he said:
Um, basically the things I enjoy doing most would be, the research for
my export company. Um, it’s a passion that I have and it I guess it
mighta came from my background of getting a degree in business
administration, and that’s basically, what, what I’ve uh, what my
goals in life has been to uh, have my, to be the boss and have my own
export business.
“If you don’t do anything, society will frown on it”
Demetrius seemed very focused on his desire to attain work. Part of
his focus was due to how he wanted to work in a field related to healthcare by
exporting medical equipment. His focused desire to work in exporting was
also related to his perception of societal values that people should be
working: “If you don’t do anything, society will frown on it, and say he’s a
couch potato. If you’re not working on any type of projects or anything”
(Demetrius Interview 7-22-05).
Demetrius’ strong desire to work was driven both by his interest in
working in healthcare and by his desire to be an entrepreneur and own his
own business. He also felt that there were strong societal values on people
working. His desire to work forced Demetrius to get out of the house and
was the occasion for some of his social contacts as will be described in the
next passage.
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“A lot of people know me”
Demetrius’ hope of owning his own importing company also
permeated much of his daily routine. He did research for his export company
in the city library, at the computers there, as well as at home. I visited him at
the city library on a few occasions and observed him to have a network of
peers and librarians there who knew him. When we agreed to meet at the city
library branch where he did research for his exporting company, he gave me
the following instructions: “Ask at the desk, ask Don, his name. He, he
knows me. A lot of people know me. You’ll m—you’ll see me sitting down.
(Demetrius Interview 6-27-05)
When we met at the library, he greeted the librarian behind the desk
by name as he signed up for a time to work online. As he showed me how he
was working on his resume and getting his email on the library’s computer,
he also interacted with some of the other people working at the computer
center. They were mostly males who seemed to be in their 30’s and 40’s. It
was clear that Demetrius had a niche in this library world, something that
would not have not been apparent from just seeing him in a more passive role
at ETE. The staff and patrons of the library provided some suggestions and
support for Demetrius, and he in turn did the same for the other patrons.
Demetrius also had leisure interests that were not apparent from just
seeing him at ETE. Many of his leisure interests were also related to his
desire to do exporting.
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Leisure Occupations
“If you can speak these languages, your opportunities increase”
Demetrius’ hobby of studying languages was related to his hope of
running his own exporting business. He discussed the importance of his
hobbies as more than just fun and a way to pass the time. He studied Spanish
and Japanese on his own at home. He spent quite a bit of time each day
studying these languages from textbooks he had acquired. He once told me
that he had been through the textbooks more than once, but that is what it
took to really learn from them. The particular languages he studied were ones
that he felt would be helpful in his business of exporting. In the following
passage, Demetrius talks about how he became interested in studying
languages.
Oh yeah, languages, the tower of Babel. [Both chuckle]. It’s so con,
it’s, it’s um, very interesting that you have all these cultures, and they
all speak different languages. When I was at Cal State, I was, at that
time, part of what they called the secretariat of model united
nations….And so by being a member of the model united nations, I
became intrigued with languages. And so, in the Tower of Babel, in
the Bible, they talk about how people are so confused because they
speak these different languages. And so I also knew that some of the
people in Saudi Arabia when I was up at the university, they spoke 4
and 5 different languages, and…people in Europe, they speak 3,4,5,6
different languages. So I was, I was exposed to that culture, and so I
said “if I can speak 3 languages that would be fine, that would be
good for me.” And on the West Coast, you have the influence of
Mexico, which is Spanish. Half the streets are written in Spanish.
And then you have, uh, Japan, which is a G-7 country, which means
there’s seven countries that are the most industrial countries or richest
countries in the world, and they are the United States, England,
France, Canada, Italy, Germany, and Japan, and also now Russia.
And so, these are the wealthiest countries in the world, and if you can
speak these languages, your opportunities increase. (Demetrius
Interview 3-14-05)
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Thus Demetrius became interested in languages because of the
academic environment to which he was exposed in college and because of the
diverse cultural environment in Southern California. He also became
interested in studying languages because he felt it could be helpful to him in
the business world. As can be seen in the following section, other influences
on Demetrius’ life also came from college – bodybuilding and vegetarianism.
“So I was, I was brought up in that type of [healthy]
environment”
While he was attending the university, he also became interested in
their gerontology program. He worked part-time for the program and became
interested in the study of longevity and the factors that led to long life. He
discovered that longevity was related to exercise and eating healthy, so he
began to incorporate these factors into his lifestyle. He discussed
bodybuilding as something related to his ideas of pursuing health. This
interest in longevity led to his becoming a lifetime bodybuilder and
vegetarian. He said:
And so, eat the right foods, nutrition, I became a vegetarian because
of it. And um, had these, in the muscle magazine they had all these
different products and so, it was right along with my university,
because when they’d lift weights to play football, they, they have to
lift maybe 200, 300 pounds, and so to build upper strength. That’s
what gave them the advantage over other teams in United States, it
basically came out of Venice Beach….But um, when my school was
competing against all these other schools, lot of the football players
went to Gold’s Gym to do their training. And so when you have these
guys with all these muscles going up against these other teams that
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don’t have it, the program, of course they would be NCAA champs.
So, uh, the program worked so well that the university started to
invest money to have their own equipment on campus, where guys
could come in, and girls could come in, and lift weights. So I was, I
was brought up in that type of environment. So, I just kept, stayed
with it. (Demetrius Interview 4-25-05)
As Demetrius studied Spanish and Japanese and worked on
bodybuilding, he continued to work on getting started in the exporting
business. At some point Demetrius realized that he could use some help
getting started in the exporting business, so he turned to employment
agencies.
Demetrius Looks for Help Getting Started in Exporting
“Around, Round, Round in Circles”
Before he began working with ETE, Demetrius had worked with
several other mental health and employment agencies. One day he began to
describe some of his other experiences with employment agencies. He told
the stories with a sense of humor as he and I laughed at how outrageous some
of his experiences have been. He began by talking about his experience with
an employment office in the city where he lived.
Then one time I went to um, the employment office. They didn’t
know what to do, they wanted to set me up, as a veteran, cuz I was in
the Air Force, they wanted to put me in industry as far as, what
veterans do. They wanted to give me a job as a veteran, and when I
said something about exporting, it just like, there was, there was, they
had nothing in their mind to connect it with…And all they had was,
they have standardized programs, where you say well if you’re a
veteran then you go here. You try to tell them you’re not a veteran,
they say but you are a veteran. And you still go here. And [laughs]
and no matter what you say, they just, they just uh, what would you
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say, concentrate on just that fact that you’re a veteran… And I’ll be
saying to myself, why did I tell them I’m a veteran? [Laughs] You
know, I just, they just constantly say well, before I help you, you’re a
veteran, so you must go to the veteran counsel. (Demetrius Interview
6-27-05)
After being categorized as a veteran by the employment office, he
was referred to the Veteran’s Counsel. He said:
You go to veteran counsel, then they say well we’ll send you to a job
fair, job fair for veterans. And I’m also saying well I want a job in
exporting. But they say well but you’re a veteran [laughs] and so, and
it just goes on and on, around, ’round, ’round in circles. And so you
can’t really talk to those people, you can’t really tell them that you,
you want exporting cuz it just, it doesn’t even make sense to them.
(Demetrius Interview 6-27-05)
“And they’d start again with the veteran”
As we talked about his employment experiences, he continued his
story of trying to work with the employment office.
Yeah I kept going to employment office, talk to the counselor. You’re
a veteran, and they’d start again with the veteran [laughs] and they
send you way out to Westwood. You’re a veteran, you gotta go in
here. Said, you’ve been in the Air Force, you can work in aerospace
industry, aero—[laughs] I said no, I don’t, I said, sometimes I just
wouldn’t say, I wouldn’t argue with them. I said ok, they’ll send me
out to this aerospace place, and this place that manufactured aero
par—airplane parts. Then they would say you, you should be
working for uh, Boeing or MacDonald Douglas. And go out to
MacDonald Douglas and they’re looking for engineers. And I got my
degree in business. And you know just, just way outside my expertise.
And just waste time, you know, I just look back on this, on how much
time it, it wasted. You know. (Demetrius Interview 6-27-05)
“I’d try to make it fit”
Though he felt that much time had been wasted with inappropriate job
referrals, Demetrius persevered in his work with the employment office.
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They continued to disregard his interests, experience, and education, and
made job referrals on the “one size fits all” model. He discussed his
frustration with these efforts, and expressed his continued desire to work in
exporting. However, he tried to make the most of the referrals. He was even
quite creative at times in finding justification for doing jobs that seemed
inappropriate to him.
They would say well, what are you applying for? I’d put export and,
it’d just stay in their computers but, it’s that—and one time they sent
me on a job, I remember I was going to the employment office, they
said they have a job for a carpenter. I, I said, how am I gonna use
this, working as a carpenter? Um, saying, talking about mental
health. I was gonna be so dis—I’d be so disillusioned and so
depressed being a carpenter, but then I said, I’d try to make it fit,
right? So I’d say “okay, Jesus Christ was a carpenter, right?” I said
“maybe I’ll learn something that way, right?” And so it’s, it’s, it’s
macho, right? I was trying to find all the positives, positive things
about it. I said well, maybe that would be to my interests, you know
like the ways maybe, you know of construction. It had nothing to do
with education, and nothing to do with my, my degree in business.
And so, I would get in the car, my car, I had a car of my own then,
and I would drive way out to um, um, Sylmar to the c—uh
Carpenter’s Union. And I was taking classes with them, and working
with this company doing carpentry work, you know like, putting up
the walls… Those are some of the things. I said what am I doing
here? But I said, well I stayed motivated you know, I said “well,
maybe this is fine.” I said “you gotta make it fine.” So I would try to
make it fun, try to say well, uh, come home, be kinda little tired. I’d
say well, we put up a wall today, put up something [laughs], we just
would submit work. And I’m going, I went to the Air Force, I went
to, got my college education, to work in construction? I said well if
that was the case I should have got a degree in engineering, right?
[Laughs] Said, well engineering, I said what am I doing here? But
this is what the employment office sent me. That’s all they had.
(Demetrius 6-27-05)
All of these inappropriate referrals led me to ask Demetrius if the
employment office considered his feelings about all the referrals. He
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said, “No [laughs], you know, no [laughs]. Never did ask” (Demetrius
Interview 6-27-05).
Finally, after many inappropriate job referrals at several agencies, Demetrius
connected to ETE.
Demetrius and ETE
“They cater to the individual”
Demetrius went round and round with an employment system
designed to find him a job, any job, but not necessarily the job in which he
was interested. He finally found his way to ETE because his mom read an ad
about ETE in a newspaper. He contrasted his previous experience with
“regular” employment offices with his experiences at ETE.
Yeah. This is mainly it, and what they do, difference this employment
office [ETE] versus the general, average employment office is they
cater to the individual and they take their time with the individual.
And they, they um, spend time and effort in pursuing what the
individual’s goals are. When you go to the regular employment
office, they, they used to have a listing of jobs available and say do
you, do you wanna job? Well here’s the jobs that are available. Take
it or leave it. [Laughs] And so, they were very cold, you know, and
they, they were like, well, they didn’t seem to, they had so many
people, so many clients. So many people come in there, that they
didn’t have time to take their time with one person. (Demetrius
Interview 6-27-05)
“That’s the program that ETE had at the time - they weren’t
really into…, helping me… get a job in exporting”
Though Demetrius found his more recent experiences with ETE to be
different from that of other employment agencies, the difference wasn’t
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always so clear. Demetrius described how before Bob became the director,
ETE operated much more like “regular” employment agencies.
Yeah well like um, when I first started, it was like um, things I
worked on wasn’t really on getting a job. It was basically on goal-
setting, what, what you want out of ETE. Um, it wasn’t um, how to
find a job in exporting. So it’s only lately that I finished a resume,
well there was resume preparation, and um, they had different type of
opportunities, like maybe um, a library aide. I had to get tested, set
me down to take a test to be a library aide, cuz I had a college degree
so I qualified to be a library aide. So I went to Garden High School to
take a test in a, in a room with about fifty people. So I passed the test,
then for a whole year I went on interviews to try and get a job as a
library aide. And a library aide, I said I just went along with it
because this is what, how ETE was at that time. And so um, it wasn’t
really, I wasn’t really that enthused about it. I, one time I wanted to
be a teacher, but uh, I couldn’t pass, after I got, graduated from
college, I couldn’t pass the teacher’s exam. It was very difficult, it
was way outside my expertise. As far as exporting, teachers,
teach—li—well librarian aide has nothing to do at all with exporting.
Uh, it’s like two apples and oranges, you know it’s like two different,
two different type of uh entities… So I went on uh, maybe twenty
interviews. [Laughs] I never will forget that, when I had twenty and
they kept calling me, “would you like to come in for an interview?”
Go to the elementary school, and you had to explain, um, why you
wanted to be a, a librarian aide. And um, they were looking for
people who were basically bilingual because 80 percent of the schools
are Hispanic now. And so I would go in there and they would ask me
do I know Spanish. I said I know a little bit of Spanish but I didn’t
know how to speak it fluently. And so um, the people who really got
the job were people who were bilingual, speak fluent English, as
fluent in Spanish. And it was just a whole year wasted. And that was
based on, that’s, that’s the program that ETE had at the time. You
know they weren’t really into, you know, helping me to become, get a
job in exporting. They were just getting what was available, what
was out there. (Demetrius Interview 6-27-05)
“I guess they just decided, well let’s see what does he want?”
Demetrius definitely noticed a change at some point in the way ETE
operated, and the way he was helped in his job search. He wasn’t sure why
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things had changed at ETE. Apparently the change in philosophy of ETE
from job readiness to actually learning by doing jobs, wasn’t explained to
him. He appropriately wondered if ETE changed because people weren’t
getting jobs under the previous philosophy.
And so um, went to my, went on a job interview for, with ETE for
um, Smart [laughs], Smart and Final, and a group of us come
together. And so we went over to Smart and Final, we did personal
interviews. It was really stale, nobody got the job, and they didn’t
wanna hire uh, uh, disabled people I guess, even though they had.
They said they did, but uh, no one ever got hired. And so, it was after
uh, so many failed attempts, I guess they just decided, well let’s see
what does he want? Cuz no one was hiring us anyway. So when I
told them about exporting, well Brian, he said, well that’s what we
wanna try to do. And so um, I don’t know, for a while he was asking
me questions about exporting, how I started my business, and what
happened to it. And then we had to go through um, how to do the
resume to reflect my, my ability. Really pulled a lot of things out of
me on how to do the resume. The resumes that I had before, they
were, they weren’t pertaining to exporting. Really they were just
general jobs that I had, you know. So we had to come up with a
resume just for, like exporting. And still the resume needs some,
needs some uh, revision. But it was uh, it was a better than it was,
was. So it seems like I’ve been at it for a while, but, in retrospect, the
resume has only been completed in the last three months I would say.
(Demetrius Interview 6-27-05)
“I was very patient, you, I said, well, something’s gonna happen”
I asked Demetrius what he thought about the previous time spent at
ETE when he wasn’t working towards his goal of working in exporting.
A waste of time, but I was very patient. You know I said, well,
something’s gonna happen, I just know it will. I just kept trying and
trying. I said well, I don’t know why I keep, keep coming down here.
[Laughs] Every Monday. At first it was, it was um, once a month,
then it was twice a month, and then he started to say I’m gonna start
coming now every week. And I, I kept saying well I don’t know why,
I’m just wasting gas [laughs]. I’m not getting anywhere. And a lot of
people were in it, in ETE, they just stopped coming. They just
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wouldn’t come anymore. I said well I, I’m not that type of person. I
just keep coming, you know just keep [laughs]… I don’t know where
they’re sending me, I don’t know where this way can lead to.
(Demetrius Interview 6-27-05)
“And so they just came around”
So Demetrius continued to go to ETE regularly even though he felt as
though it wasn’t helping him towards his goal of exporting. So I asked him if
he could remember what ETE was telling him before they started working
with him on his exporting goal. He tried to remember what they were telling
him, and how that changed.
I don’t…let’s see if I can remember, it was, well, you have, they have
all these, all these um, plaques on the walls, people that had gotten
jobs. And um, I looked at those jobs, and I said well, I couldn’t
qualify for any of those jobs. They would say oh yes you can, you
can do it, you can do it, and they would motivate me that way. And I
said uh, “I don’t really wanna work in these jobs.” And they said,
said “well, it’s part of mental health, if you don’t really wanna work
there, we’re not gonna force you to.” And I said “oh that’s good, I’m
glad that, that, they’re that way.” And so I kept saying I really would,
wouldn’t wanna work at some of those shops, like sewing, you know,
working in a factory, and doing sewing. I said I would, I would like
to use my college degree, you know, for export industry. You know?
And so um, you know, somehow, they just stopped saying things like
um, ok, we’re gonna send you out on this type of job or on this
interview. And so they just came around, I don’t know why, if it was
my persistence or they just felt sorry for me, or what it was. But I’m
satisfied now, that they’re finally doing something in exporting that I
can use. (Demetrius Interview 6-27-05)
“That’s what ETE is all about, getting people jobs”
When the focus of ETE changed from job readiness to actual
employment in an area of interest, it wasn’t exactly what Demetrius was
searching for. Although he found it to be an improvement, Demetrius was
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interested in exporting, specifically in his own export company. He had
previously run a successful import company with some friends and felt the
transition to a successful export company would not be that much of a
stretch. He saw some benefit though in ETE’s new offer to help him get a
job working in the exporting industry. He felt it would at least be helpful in
learning the keys to another exporting company’s success. He related the
following in a dialogue with me:
D: Well, what, what Mark suggests is that um, I get some more
experience in with the export company, to start my own company.
And, to see, to, wants me to get with a export company and work for
them for a while, and see their operation. And it’s like, a middle-
sized company. And then copy their methods, and, and systems, and
incorporate it in my own business. So I said ok, I’ll do that, you
know. Cuz that’s what ETE is all about, getting people jobs. So
they’re not necessarily into me starting my own business, even though
they help me to try to start my own business. So, they, they want me
to work for somebody and get some experience like that, then start my
own business.
S: What do you think about that?
D: Well I think it’s gonna be a little time consuming, but uh, I don’t
mind. Take a year. Take a year out to work for somebody, to see
how they’re, how the system—as long as the company is, is making
some money and is prosp…—I guess if it, it’s doing halfway decent
business, to making a few million dollars I guess I can copy that.
(Demetrius Interview 6-27-05)
“I can talk to him about exporting and he doesn’t get turned off”
Demetrius described how Mark had been helpful by being supportive,
as well as helping him work towards a job at an exporting company.
He’s [Mark’s] very, he’s been very helpful on getting companies that
do exporting. His, his girlfriend is into that industry, um, so he’s been
very helpful as motivator. I can talk to him about exporting and, and
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he doesn’t get turned off on it. He doesn’t say uh, let’s talk about
something else. He doesn’t do that. He says let’s, let’s motivate you,
motivate me even more to get a job in exporting, and start a business
in exporting. (Demetrius Interview 6-27-05)
“ETE… is an exception to the rule”
Demetrius saw ETE, especially under Bob’s leadership, as helpful to
him in his job search. He saw a real difference between ETE and other
employment programs. He seemed to feel that ETE was interested in his
skills and education and not just placing him in any job, as he had with other
employment agencies.
So when you have a majority of the people only have high school
degrees, we’re talking millions and millions of people who only have
high school degrees, so then, when you come into their system, the
employment office, you’re like, one in a million. And they don’t have
anything specialized for you. They only have programs for people
with high school degrees… But now like ETE would, is, an exception
to the rule, where they would cater to programs for somebody with a
college degree, where they take time with someone with a college
degree. (Demetrius Interview 6-27-05)
Somehow, after patiently working with the employment office, going
to job interviews he felt were inappropriate, and working at jobs for which he
felt ill-equipped, Demetrius had begun working with ETE. He and Mark had
just begun to work on resumes and attend networking lunches with other
exporters when the news came to ETE staff and clients that ETE might close.
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ETE Closes
“At first it was kind of like a shock”
ETE had been operating on funds from the Mental Health Department
and the Department of Rehabilitation. They hadn’t been able to get more
funding for their contracts though, and staff hadn’t had raises in several
years. The Department of Mental Health was only willing to increase
funding by having ETE offer more mental health services such as psychiatry
and counseling. ETE’s director and board had taken the stance that they
didn’t want to become a mental health services agency; they just wanted to
get what they considered more fair funding for the great success they had as
an employment agency for people with mental illness. There were some hard
negotiations between ETE and the Department of Mental Health and the
Department of Rehabilitation. There were attempts at working out the
funding for several weeks, but finally word came that ETE would be closing.
All its clients would be referred to other existing mental health programs.
Demetrius talked some about what ETE’s closing would mean to him.
Well, at first it did, at first it was kind of like a shock, but then I just
said, I have to work a little faster. Make sure I know how to paste. I
know how to copy and paste and I know how to send my emails out.
Cuz that’s what I was gonna be doing the rest of the year. So I’ll
probably be doing that on my own now, in the library. (Demetrius
Interview 6-30-05)
So I asked Demetrius if he thought ETE’s closing would make things
more difficult for him in his job search.
Well, yeah, it’ll just be difficult. I won’t have, I won’t have anybody
to um, to counsel me as far as um, interviews or what to say, or
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how… Maybe like one step I was gonna do is to re, refine my, my
resume for more exporting skills. So I won’t be able to do that. I’ll
have to keep it the same way for me, hope that’ll work. So, I can do
the best I can, and hope they like what I got.
(Demetrius Interview 6-30-05)
“I have, I have to have obstacles that I have to overcome now”
In that same interview, Demetrius also described how he was coping
with ETE being closed, both without the physical assistance and without the
support and structure.
But uh, I dunno, it’s, it’s gonna be slow. ‘Cuz like I even look, I look
at my schedule, when they announced they been closed for almost
four, four weeks, three weeks now. And look at my progress as far as
trying to keep up some type of schedule, and I haven’t really done
anything except for work on my business. And so like um, I find
myself, like during the week, oh, gotta go to the agency, gotta go to
ETE, oh that’s right, they’re closed…. And so, have, you know I’m in
the habit of, of thinking that way now, and forget about thinking that,
and have to incorporate and say well, since I can’t go to ETE this
Monday, I should be working on finding a job Monday…. So, like
two weeks ago I was supposed to um, go on the internet, like that,
you’d, like now the internet’s down so I can’t do anything. But um,
two weeks ago I was supposed to do, do something on the internet, I
messed around, trying to get my resume, how to do, how to send
resumes out, so I only put in half an hour, instead of an hour. So I
have a struggle. I have, I have to have obstacles that I have to
overcome now.
(Demetrius Interview 7-22-05)
As I continued to maintain contact with Demetrius during the course
of writing this dissertation, he spent several months in a referral limbo. He
was supposed to be working with another agency but didn’t receive
appointments or services for some time. Late in 2006 he did finally begin to
receive employment services from the Department of Rehabilitation and its
“Job Club.” Eventually he was able to find work as a tutor for teenagers in
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Middle School and High School. As of December 2006, he was still working
on his exporting business but had begun to study medicine on his own with
the hope of attending medical school one day.
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Frank’s Occupational Story: “Nobody Can Help You Like Yourself”
Introduction and Overview
The overarching theme of Frank’s story is his active pursuit of
recovery from mental illness. Many of his occupations were useful to him
because they were helpful in his recovery. He read books so that he could
learn how to help himself. He watched television programs that he thought
would be instructive in some way. His writing was devoted to writing about
things that he had found helpful in his recovery from mental illness. Exercise
was yet another pursuit that helped him feel better. At times he struggled to
understand why the recovery process was so difficult and to understand why
he didn’t receive more support for his recovery.
In the sections which follow, I will tell Frank’s story through his
occupations as he described them to me. I will begin with his occupational
desires in high school and continue his occupational pursuits through the time
of these interviews. I will also relate Frank’s interactions with ETE and the
mental health system. Finally I will describe Frank’s hopes for the future,
and how he interacted with critics of his hopes.
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High School
“I decided I was gonna be a philosopher”
Since this is to be Frank’s story as seen through occupations that were
important to him, I’ll begin with High School where he started the story of
his occupations with vocational aspirations. Frank began by telling me about
the program he was in during high-school that had a vocational component
leading directly to employment after graduation.
F: and you know, like uh, there was this uh, I’d have to get it out but,
…I forgot what it was called, it was called. And I wanna do it without
having to get out my folder and uh, uh… a program that was kinda
like ETE, that t—talked about dress code and I don’t know what else.
But at the end they offered, they actually offered a job to people.
There was no inter—the only interview, the only need for an
interview was for the employer to get to know the person. Otherwise
the job was guaranteed.
S: Were you in that program?
F: Right, right. And at the end of high school, I walked in there
because I wanted to see what it was like, but in my deranged state of
mind, I decided I was gonna be a philosopher, which I never became,
instead of going to that hardware store in Peninsula Center and
working there. (Frank Interview 4-26-05)
“It’s funny how you think you made the wrong decisions”
While he was telling me about his high-school experience and the
opportunity for employment that he passed up, Frank went on in the same
interview to wonder about the choice he had made at that point and whether
he should have just accepted the job at the hardware store.
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I don’t know why, it’s like I was hallucinating, because, here I am,
right where I, or right back where I started, but then again, if I did
that, that was before the time the paradox, Progress Paradox book
came out, before all these tools that I have now were available and I
could develop. That was before then. I don’t know how I would do.
But then again, I wouldn’t have to make time that wasn’t there, like if
they, they customers weren’t there all I had to do was just stand
around. But you know, it’s funny how you think you made the wrong
decisions, then there comes a time when you find out it actually
worked out for the best. So I can’t really judge how it would’ve
affected me if I had done things in a more orderly way. But there was
some order, especially in high school. (Frank Interview 4-26-05)
College
“I didn’t like it there”
Frank next described his college experiences after high-school. “I
graduated high-school in like ’86. I went to a private university for one year.
I didn’t like it there. It wasn’t a good experience” (Frank Interview 3-8-05).
While he was there, Frank experienced his first psychotic symptoms.
Frank is Diagnosed with Schizophrenia
“Well, I just started hallucinating”
Frank was diagnosed with schizophrenia while he was in college at
the private university. He described some of the process of how he was
diagnosed with schizophrenia.
S: Mm. So, then, at some point after high school is when you first, uh
got diagnosed with mental illness?
F: In 1986 to ‘87, right about. No actually, before then, when I was…
yeah I guess you could say somewhere around there.
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S: And this was when you were going through college, some of those
years?
F: Yeah, at the private University, uh, before it consolidated into
another campus.
S: And, and what happened that finally got you encountered with the
mental health system at that point?
F: Well I just started hallucinating about all the things I threw away,
which became a subject of my book. And uh, and I, I went to see the
local hospital of the university, or the other campus, and uh, they put
me on medication. (Frank Interview 4-26-05)
Besides his hallucinations, Frank also had difficulty with obsessions. Once
he told me this moving story about how frustrated his dad had become over
Frank’s obsessions.
At one point, I was near the refrigerator, I wasn’t sure that I touched –
closed it or not. And my dad was so upset, he started crying and
covering his head. He doesn’t have much hair, but I saw his bald spot
as he covered his head and kneeled down and started crying because
he was so upset with my obsession. (Frank Interview 3-29-05)
Changing Schools
“I had some rough times”
After being diagnosed with schizophrenia, Frank continued to
struggle with his symptoms and going to school. He left the private
university and started at one of the California public universities.
I found out I could go to the public university right away and I should
have. But then I did – after that first year I went there …. Anyway
when I went there, um…I had some rough times.
(Frank Interview 3-8-05)
When he started attending the public univesity, he seemed to be doing
better with his symptoms. He said:
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And I started medication from then on, and uh, I stopped for a while I
think, until I had an episode at the public university, um uh, I don’t
know when. I don’t know when, I think there was, that must have
been in ’87 as well. (Frank Interview 4-26-05)
“I realized that I have to look for the jobs in the market”
Even as Frank struggled with his mental illness, he was also
struggling with what to major in and what kind of employment he might find.
First I was trying to uh, do communications which I thought was
good. I learned at the private university I could do that. But then
when I went to the public university, I realized that I have to look for
the jobs in the market – not just something that was there but
something that the market demands. So then I started going towards
uh, I tried to do art, but my art wasn’t like something that I had a lot
of credit like I could be an animator – I couldn’t do that. I couldn’t be
like Picasso or anything like that. So, then I went towards the area of
accounting. When I had accounting, I uh, had a rough time. I got to
cost accounting and then I started quitting. Then I went to see my
counselor again and he recommended Public Administration, because
I could transfer some of the business courses into that, uh, and go into
the Financial Management concentration. So I did that, uh, I was uh,
you know, uh, very optimistic. I had no idea what was ahead of me
that was going to be obstacles, but not knowing that I was very
optimistic. When I graduated in ’93, I uh, wanted to pursue my
master’s and then I learned that I needed experience. So that was a
setback. But I couldn’t get my Master’s because it was too difficult.
(Frank Interview 3-8-05).
After getting his degree in Public Administration, and deciding he
couldn’t get a Master’s degree, Frank left school.
Employment after College
“And that’s when I stopped going to school for awhile”
When he left school he decided to try to find a job. He then described
a series of brief jobs that he had that didn’t work out.
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And that’s when I stopped going to school for awhile. I went to uh,
employment agencies and for one, one day, I got like uh, a two-day
job where I assembled car brakes, automobile brakes but then they let
me go. But then I had a telemarketing for the daily paper, but I said
something like can I just tell them like I’m doing it for my job, I hope
it doesn’t interfere with you. Um, and um, but when I said that
apparently they didn’t like it, the, the, uh person in charge and so the,
the second day I got a call back that I wasn’t needed and I figured out
probably it was what I said. And there’s another time later when I
said something, it seems like I say things and it sets people off. (Frank
Interview 3-8-05)
When Frank had difficulty finding a lasting job, he decided that perhaps he
should return to school.
Return to School
“Then I decided that I’d take Computer Application Systems”
When Frank returned to school, he planned to study computers, but
had difficulty with some of the courses.
Um…then I decided that I’d take Computer Application Systems at
the city college….And so I got frustrated with that after awhile and
then I quit. Then, um, I couldn’t get my certificate. But then, I
realized that I could get, get uh, maybe I could get, take another
elective instead of that which was internet. And I said well, how hard
could that be? But, the instructor made it hard. So then I decided to
take it from another instructor but that instructor, who uh, who I liked,
which I liked, who I liked, um, decided on other plans so I ended up
with the same one during summer school. And then I quit for real.
So I wasn’t able to get my certificate in Computer Application
Systems. Then I decided some years later, or I don’t know how long
afterwards, to take up Computer, uh, Repair. And, uh, apparently I
needed experience in that area which I didn’t have. But I didn’t get
the full-blown Computer Repair, uh, certificate. I got a Computer
Support system, Support Specialist Certificate, because I wasn’t able
to get the basics like everyone else…. I couldn’t even find anything in
Computer Support Specialist (Frank Interview 3-8-05).
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So, after some difficulty with courses, and after stopping for a number of
years, Frank finished school with a certificate as a computer support
specialist. Besides pursuing his education, there were several other
occupations that were very important to Frank. I will describe them in the
next section. These important occupations were diverse and included
writing, reading, exercise, and religious pursuits.
Leisure Occupations
Writing
As Frank was relating to me his educational and vocational history, he
also told me about other occupations that were important to him. For Frank,
one of the most important occupations in his life, which overlapped both
vocational and leisure interests, was his writing.
“I think it started back in ’98”
An occupation that seemed quite important to Frank was working to
become a writer. Frank explained to me that he hadn’t always been
interested in writing, but then he got the idea to work on a book. As he
continued to work on the book, he became more motivated. He said:
Well I think it started back in ’98. That was the, the far, the uh, the
farthest back time I could remember that I started thinking about it,
but it wasn’t until around 2001 that I actually started filling in the
framework, and then after that, I started wavering here and there, and
I started adding some divisions, and then after that, I, I , it was just
this, the beginning of this year that I really started seriously filling in
all the gaps. (Frank Interview 4-26-05)
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“I find things that other people do not find”
Once when I was interviewing Frank, he talked to me about how he
saw himself and his skills in relationship to his writing. He saw himself as
having unique insights that helped make him a good writer. In an interview
he said:
F: Oh (somewhat emphatically). Well, I made this sentence a long
time ago. I wrote it down. Uh, I, uh to describe myself in one
sentence, I find things that other people do not find.
S: Hm. Can you tell me more about that?
F: Well, that’s what has made me a writer. That’s what has made me
an authority, uh, to write about these things. (Interview 3-8-05)
“As soon as I can get them down in writing, I can, it would be
such a relief”
Frank also saw his writing as a part of his recovery process. He was
able to use the writing both to express his ideas and also as an avenue of
expression to channel some of the energy of the constant thought process in
which he was often engaged.
Right, yeah. And I am so bombarded with these thoughts, that, um, as
soon as I can get them down in writing, I can, it would be such a
relief. It would be finally all this load off my mind. It would be such
a tremendous relief, but uh, already I’ve recovered a lot, but, that’s
kind of odd, I recovered a lot but yet I still have so much load. (Frank
Interview 3-8-05)
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“Whenever I find time, uh, it becomes useful to me to write”
Frank wasn’t just writing in general. He had specific goals of
completing two different books. One of the books was about the helpful
things that he had discovered in coping with his own problems and issues.
The other book was about his experiences he had been through. Frank told
me that he spent a lot of time working on these books, and he worried about
whether he would be able to finish them.
When I visited Frank’s house on 4-26-05, I saw that he had a large
blotter on the dining room table and some papers and books. In the corner of
the dining room were a stack of papers and books that Frank said belonged to
him and his dad. He said that he kept the most recent work he was doing in
the dining room where he preferred to work. It seemed that his working
location in the center of the house with his writings there spoke to the
centrality of writing in Frank’s life. I asked Frank if he had a specific time
that he worked on his writing every day and he answered: “Uh, no.
Whenever I find time, uh, it becomes useful to me to write” (Frank Interview
3-15-05).
“So I take things out, and then I re-write”
Frank felt pressured to work on his writing, both because of its
importance to him and because he felt that he had gotten a late start in life.
As he spent much of his time and energy on his writing, he had developed a
process for how he worked.
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Well, I’ve had to edit from what I wrote before. So I take things out,
and then I re-write and then I try to say the same thing in fewer
words. And then I get rid of the other ones, or put them aside. Then
there’s another book that I write, and that book is going to based on
all my organization skills, on uh…on uh, how to be independent and
that sort of thing…, And that’s gonna take some time. So, I, time is
very valuable for me right now, and you know I want to spend it as
usefully as possible. I don’t have a lot more, I’ve wasted too much
time already, and I can’t afford to waste any more time. So, I have to
do all these things and I have to figure it out, as overwhelming as it is.
(Frank Interview 3-8-05)
“Both uh, [Books] different… addressing two different factors”
Frank’s idea for writing the two books came from his own recovery
process. He decided to write one book that was more process and
experiential about his own recovery. The other book he decided to write with
more concrete advice and helpful tips.
S: So that’s how you plan to bring them together – the responsibilities
and…
F: Right – in two books.
S: and the experiences?
F: One, both uh, different with two, uh, addressing two different
factors.
S: One of the books is about your organizational…
F: Right and the other one is about my experiences, things that have,
other than responsibilities, that have enriched my life.
S: Hm. Do you write them both at the same time, or do you…
F: Well, I uh, I uh, go back and forth but I do it in a very consistent
way, so that I’m not jumping arbitrarily from one to the other. But
mostly it’s the enrichment part right now.
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S: The enrichment part, the things that you’ve…
F: Other than responsibilities. (Frank Interview 3-8-05)
“I try to compensate in my writing, for, uh anything that I have
weaknesses in”
Frank talked about how he was helped through this occupation of
writing: “I go into more, uh, other parts, where I, I try to compensate in my
writing, for uh, anything that I have weaknesses in” (Frank Interview 3-8-05).
He found that the act of engaging in the process of writing gave him more
hope that he would be able to complete his writing. “And as my writing
progresses, and as I move on through life, I’m getting less and less
overwhelmed” (Frank Interview 3-15-05). Working, though it took him
away from his writing, also provided support for the writing as he described
in the following passage:
Yeah, like uh I don’t have as much time to write. So I have to take a
break cause I have to work. But then when I’m at work, I start
thinking of things that, uh, I have to add on to where I stopped.
Whereas if I just continued without having those thoughts occur, I
would have not made it as good as it would be.
(Frank Interview 3-8-05).
Thus Frank invested a lot of time and energy in his writing but found it to be
a good outlet for expressing himself. He also found his writing to be a good
place to record his experiences and share what had been helpful to him in his
recovery from mental illness. He found the writing itself to also be a way to
find hope about his recovery. In addition to writing, Frank also found a lot of
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help for his recovery in the things he read. I will talk more about this in the
next section.
Reading
“I’ve tried to read things that will change me”
Frank found a lot of help in the occupation of reading. He read things
that he thought would be helpful to his recovery. Some of these books were
books that Frank came across in the course his various activities. When I
visited the supermarket where Frank was working, he showed me a book he
was reading that came from the book section of the supermarket. He sought
out books that he thought had something to say that would help him in some
way. He seemed to feel that it was very important to always be working to
improve himself and work on his recovery from mental illness. In the
following passage he talks about this need to read things for self-
improvement and contrasts that with his father’s watching television just for
enjoyment.
No, like the book says and what I’ve always tried to do, I’ve tried to
read things that will change me. If they don’t change me, I don’t
bother with it (hm). Which is something, I’m very unlike my dad, he
just turns on the television and watches anything. Sometimes he
watches some real nice things like Dr. Phil or, uh, but when he goes
into things like Jeopardy on television, that game show, I, I can’t
understand how anyone can just get a general idea from all kinds of
things and change from that. (Frank Interview 3-8-05)
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“I’m trying to find ways of not thinking like that, that’s it’s all
gloom and doom”
He also read specifically to support his hopes: “But, I’m trying to,
I’m trying to find ways of not thinking like that, that’s it’s all gloom and
doom by choosing books and things, trying to find answers…” (Frank
Interview 3-8-05). When he read, he found ideas that were helpful and
allowed him another outlet for recovery besides his writing.
S: Yeah, sure. So, do you read a lot of books like that, like the…
F: Yeah, I’ve read a lot of books. They all give me a different,
uh…uh, view of how to help myself but this one has been the most
helpful, you know.
S: What, what about it have you found to be helpful?
F: That I can read it over and over again, and its, uh, which I don’t
have to depend on my own writing to read over and over to help
myself re-cooperate. I can start already without, and still try to
complete my work. And if something happens to my work, at least
I’ve done something else to help myself – that sort of thing. (Frank
Interview 3-8-05)
Reading was very important to Frank. Mostly he read to find more
ideas and tools to help him recover from mental illness. He also felt that it
was a productive act because he was working on improving himself through
reading. In a similar way, Frank found exercise to be a productive outlet for
self-improvement. In the following section I will describe more about his
relationship to exercise.
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Exercise
“I’ve tried every exercise you can imagine”
Frank seemed to see exercise as very beneficial to him on several
levels. He had participated in different forms of exercise. One type of
exercise in which he enjoyed participating was what he described as Christian
Martial Arts. He participated in a class once a week that was led by an
instructor who trained with one of Bruce Lee’s students. The class was held
on the campus of a church and had from 2 – 6 students in it. He was also
working on developing his own exercise program which he performed
regularly. Frank told me that he went through several different types of
exercise during his daily exercise routine.
Well, I’ve tried every exercise you can imagine, resistance, I’ve
combined one with another and made up something myself. You
know, I’ve…I’ve put bands around my uh, rower and did crunches
using my own system, I use a bar and uh, resistance, to do push-ups. I
just make things up myself. And uh, put two things together that no
one thought about. Sort of like, what Bruce Lee tried to do. (Frank
Interview 3-8-05)
In the same interview he also explained about making up different sets of
exercises, and putting them down on cards that he could use to organize his
exercise routine. He showed me the cards he made. Each card included a
specific exercise with a description and the number of repetitions that he
should do. In the following passage he explained how he varied his exercise
routine using the cards.
And, then I do one exercise…which, incidentally they’re not so,
they’re more like dancing, very light dancing, increments, that I
separated into several days. And once, I finish that, I’m thinking
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about re-arranging the cards that I stacked, in order of which exercise
that I do, so that there are more high-impact ones with less-impact
ones, once I get through this phase. (Frank Interview 3-8-05)
Frank also said he enjoyed walking regularly “Every time I feel like
walking I’ll walk. I’ll try to make it at least three times a week, but…I at
least take a walk” (Frank Interview 3-8-05).
“I’ve learned a whole lot about nutrition and exercise”
In addition to engaging in regular exercise, Frank was also interested
in nutrition. He pursued his interests in fitness and health with much energy
as he sought to learn more.
And I also learn a lot about nutrition. I mean just when I got, like I
got a caliper, you know those things that measure your fat? And I
learned a whole lot about nutrition and exercise when I bought that,
even though I returned it. I don’t know what it is, but something
about me is that, like I told you before, how I uh, I uh, find things that
other people can’t, that don’t. And I hope that everyone understands
that once you get through more of what you have to research, that
becomes more apparent. (Frank Interview 3-15-05)
“It has to be something structured…and that’s what Martial Arts
has provided”
Similar to Demetrius, Frank also found support for pursuing his other
occupations through exercise. He liked to do martial arts because of the
focus he said it gave him. This was from an interview on 3-15-05 in which
he was talking about the benefits of martial arts.
F: Yeah, it helps me focus, uh, because uh, along with the medication
that I take. Because I can’t handle overwhelming, uh, amounts of
information.
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S: So it’s just helpful, to you, for you to be focusing on something
else.
F: Right. (And the…) And it has to be something structured, it can’t
be anything, and that’s what Martial Arts has provided. (Frank
Interview 3-15-05)
“Progression in exercise…and that’s a possibility right there”
Frank went on to talk about how exercise was giving him hope for
accomplishing other things.
S: Is the physical aspect [of exercise] helpful too?
F: Yes. (long pause)
S: In the same way? Like focusing?
F: Yeah, because uh, you know, uh…like I’m beg…I’m beginning to
feel like there isn’t anything I can’t do within reason….
S: Hm. So…the, the exercise and the martial arts helps you feel like
you can achieve other things?
F: Within reason. (Frank Interview 3-15-05)
Frank also gave an example of how his hopes were nurtured just by
what he was able to accomplish in his exercises.
I mean like for example tomorrow, I, I can’t wait till tomorrow
morning, because first of all I’m not gonna be at work yet, if I wake
up early enough and I’m going to uh, start my…progression in
exercise in a different way, even though I still have a long way to go.
And that’s a possibility right there. (Frank Interview 3-15-05)
Exercise then, not only provided Frank with a way to pursue his goals
in health and fitness, but also helped him in other areas of his life. By
exercising, he found that he was able to better focus on other tasks. He also
found that progress in his exercise regime helped him feel hopeful about
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other areas of his life. Besides exercise, pursuing religion was another
important occupation of Frank’s. I will talk more about his religious
convictions and pursuits in the next section.
Religion
“There are just so many examples of how coincidences indicate
God is working in my life”
Frank talked quite a bit about his religious beliefs and seemed to
spend a lot of time reading things related to religion. He also liked to speak
with his pastor about his concerns and questions. He seemed to get a lot of
hope from his beliefs.
S: Oh you also mentioned sometimes you see God helping you, but
sometimes you feel like it’s not enough. Is there, do you have a sense
of, you know, why that is sometimes, or what your beliefs are about
that?
F: Perfect example. Like you said, your friend got a video camera,
and you can help, help me, for Christmas or whatever, and you have a
contact with her and that helps you help me. It’s like God helping us,
in a way, or me or you or both of us, in some sense. Or when was
drinking a soda, a, a drink, with my pastor when we were at
Starbucks, my tipping over my drink, had something to do with the
discussion we were having. It all seems like, uh, everything goes in
hand, hand-in-hand, when God helps you…. Well, you know, to, to
make it short and brief, there are just so many examples of how
coincidences indicate God is working in my life. There just is, it’s
just not possible to go through all of them. It would have to take us
another session, and I’d probably have to take a memory pill. (Frank
Interview 3-29-05)
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“It’s about whatever you …uh call your higher power”
Frank’s views on religion were influenced by the things he read. In
this interview, he was explaining to me how his religious views were shaped
by a book he had read about the power of intention.
F: Like right now. You’ve come to me and I’ve come to you. It’s
like the power of intention. We’ve contemplated and whatever our
need is, it arrives to us. That’s the only way I get through – things
come to me, because I allow them. Otherwise I’d go, I’d go crazy….
The spirit, which is un, unsee, invincible [sic]. That which is
invincible which has a more rapid frequency and a faster rate than the
lower, slower forms of energy which are hate and uh, pessimism and
those kinds of things.
S: So like a positive kind of spirit comes to you and helps you.
F: Like the force that led Star Wars.
S: And, where does that come from do you feel like? Is that like a
religious thing?
F: You have to ask Wayne Dyer [S chuckles] because he said it more
exactly than me, but I’ll try. Let me see, how can I answer that?
Um… it’s not about God you know, it’s, it’s about whatever you throw
your higher, uh call your higher power. It doesn’t have to be exactly
religious. And it’s basically whatever that grows my nails, grows your
nails. You know, and he joked and says, whatever my hair, he doesn’t
have hair so he says then well maybe that’s not a good example. But
he says, whatever that, like the nail, my nail doesn’t grow longer than
your nail. This is all through this spirit of, that, that moves all of us.
And through this, is how we, um, should act. You know that there’s a
organized force that works on our behalf. It doesn’t, uh, it doesn’t
compete with anyone else. It doesn’t choose one person over another,
but, and we’re not…better than anyone else, but we’re better than we
used to be. And that’s the key, right there…in his words.
(Frank Interview 3-15-05)
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“It’s better to think that it’s going to happen and have some kind
of hope than nothing at all”
Frank’s religious views also influenced his hopes. He looked
hopefully toward Jesus’ Second Coming as it related to not having to struggle
anymore. Though Frank was an active agent of his own recovery, he
sometimes became discouraged by his struggles to create a meaningful life.
These moments of frustration must have made the idea of Jesus’ Second
Coming and an end to sorrows and struggle sound very appealing.
F: Since Palestine is making progress with Israel, we could be looking
towards the rapture very soon, according to one evangelist. And
that’s one, that’s very, and I can’t wait until things start moving ahead
in that direction quicklier, quicker, I mean.
S: Why would you want to move ahead quickly in that direction?
F: Because, that’s the key. ….and the final war will be all the
nations coming against Jerusalem, but before then, all those people
who are just are going to be raptured so they don’t have to go through
the seven-year tribulation.
S: Now is that something you are looking forward to?
F: Yeah, I’m not sure, you know, you can’t be sure about these things
but, you know, but it’s better to think that it’s going to happen and
have some kind of hope than nothing at all. Cause you know, in this
lifetime I’m going to have mental illness, I’m going to have old age
and these kinds of things but when I look towards the future and the
possibilities, it all has to end somehow. (Frank Interview 3-8-05)
Frank continued to look to religion as a way to find meaning in life
and connection to others. He also found hope for an end to his struggles with
his religious views on the Second Coming of Christ. Thus, religion was a
powerful and positive force in his life. Another important aspect of his life
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was work. Due to his struggles to find appropriate and lasting work, Frank
had become involved at ETE. In the next section I will describe more of
Frank’s relationship with ETE.
Frank Looks for Employment Help from ETE
“There was a program there, it was all psychology and, uh, really
mundane things”
Since Frank had so much difficulty finding and keeping a job after
college, he had stumbled onto the employment services at ETE. Prior to
working with ETE, Frank hadn’t really received employment services from
other agencies. He had only seen a private psychiatrist over a long period of
time. He did have one encounter with a program at UCLA that his
psychiatrist referred him to. It didn’t seem to have any real connection for
Frank so he stopped after a day or two.
There was a program there, it was all psychology and, uh, really
mundane things. I didn’t know how it would help me, and uh,
anyway, I didn’t wanna go there, because I didn’t. I dunno why, I
just, I didn’t wanna be bothered I guess. (Frank Interview 4-26-05)
“I thought they would just give me a job”
Frank finally made the connection with ETE, through a newspaper ad
that his “half-brother” found in the paper. When I met him he had been
working with ETE for five or more years by his recollection. Because he had
a long history with ETE, he could really see the differences in philosophy and
approach that ETE had used with him over the years. In the following
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passage, he described his first thoughts about what ETE might be versus the
realities over time as he has participated there.
And uh, I had some trouble with my sleep, trying to wake up and get
there, but I, but I don’t have that trouble now. And uh, I thought that
they would just give me a job, I wasn’t sure what they would do. I
thought I would make a high income, I thought I had, I knew
something in my field right away, or something related right away or,
uh, I never thought I’d have to start at the bottom, uh. … I thought
that there would always be fun activities, like the classes they held.
But now it’s more serious, one on one. I thought they wouldn’t push
me so much, I thought I wouldn’t debate with them so much.
[Laughs] I thought that Maria [the previous director] could never
leave, and uh, I, I didn’t know how things worked in the wor—work
world. I didn’t know much about interviews or anything like that. And
I thought that applications would not be so difficult that you’d have to
get a really good one to cover everything. (Frank Interview 4-26-05)
“I said I wanna be an Urban Planner”
His work with ETE did not always go smoothly, particularly in the
beginning. He explained how he began at ETE by first selecting a job in
which he thought he might be interested, only to have this encounter with the
director of ETE at that time.
F: Yeah. Uh, when I was um, with Maria the director, she said, you
know, we can’t, I, she said what would you like to do, and I
remember what I liked about public administration that sounded real
fancy to me at the time was uh, let’s see, urban devel—urban planner.
I said I wanna be an urban planner. And she said well, you don’t have
the experience. Just because you have the degree, do you know any
experience about it? Do you know what it’s like and so on and so
forth? Do you have your masters and so on. And I said no I don’t.
So that was the first bombshell right there.
S: Mm. And so what did you do when, when she said that?
F: I started looking around like uh, hectic, like a delirious person, and
she started holding my hand to try and comfort me, and uh, I don’t
remember the, uh, conversation after that. (Frank Interview 4-26-05)
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“The two of them got together and they brainstormed this idea”
When Frank had been at ETE a little while, they strayed somewhat
from their job focus and decided that what would really help Frank most
would be to help him clarify his diagnosis. As Frank describes it in the
passage below, this didn’t work out too well.
Oh yeah, there was this one time when I was at Enrichment Through
Employment, and I, I, it seems like I’ve talked to you about this
before where, uh, Cathy, the next director that came before, uh Bob
just took over the whole thing. Uh, she and the other job developer
that was, that, that was there before Franklin, that was there before the
one that is here now, and the, the two of them got together and they
brainstormed this idea about how an obsessive-compulsive disorder
specialist can help me with uh, what they perceive as my biggest
problem. And uh, but the, but the thing is that it took an enormous
amount of money, and they kept bringing my mom back, and trying to
make her do it, and she said, wouldn’t you like to find out, wouldn’t it
be a relief to find out if this is what he really needs. And then I had a
problem with waking up and this and that, this and that, and uh, and
my psychiatrist, Dr. Orion at the time, said that uh, why don’t you just
tell them we’ll think about it, because he wasn’t convinced that I had
an obsessive-compulsive disorder problem.
(Frank Interview 4-26-05)
“And now, they have…more of a hands-on approach”
Even though he had some difficulties with ETE, Frank stayed with the
program. He was able to see a change in the focus at ETE as he continued to
work with the program. He noticed the change in philosophy that Bob had
described to me, when Bob moved ETE away from a job-readiness program
to having people learn by doing actual employment interviews and working.
Like, there was a phase a long time ago, where we would just have
classes. We would first have classes about dress code, interviewing
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skills, uh, artistic expression, uh, uh, we would role play, uh, we
would have people come in a discuss things, various types of things.
And uh, we would even have a booklet, but that was, but that was
something that didn’t work out. But even that was a little helpful,
because it gave me time to explore myself, and to think through things
before I was ready to work. And now, they have a more, uh, less of a
training approach and more of a hands on approach, where they help
you look things up on the internet, they, uh, counsel you, they’re a
speaker on your part, behalf, for the uh, employers, where nobody
else would do that, because it’s their, it would be their job. (Um-hm).
Uh, Bob is an industrial psychologist, so he knows how the mind
works. He helps us through when we, uh, are incapacitated by our,
uh, illness. And he knows a little bit about how the mind works, so he
can direct us through his own training, and uh, you know you learn
from other people as they come and go. There’s just so much to say, I
don’t think I can say it all. (Frank Interview 3-29-05)
“[ETE] won’t give me everything but will help me, uh, do things”
Frank also described ETE’s current approach as being more of a
partnership in working with him to help him achieve his goals.
I see them as a provider, who, that won’t give me everything but will
help me, uh, do things. You know like, the book question without a
question, the manager, a leader’s role is not to do things for you, but
to allow you to do things for yourself. And that’s what Enrichment
through Employment has helped me do. It’s helped me, it’s allowed
me to do things for myself, which I would not have been able to do
without them. (Frank Interview 3-29-05)
“They really take pride in you and, and rejoice in you, and
celebrate you”
Though Frank seemed to understand and be satisfied with ETE’s
current approach, he did miss some things about the former approach. He
liked the way the earlier program focus was more of a traditional mental
health program with job readiness classes and holiday parties. (Frank
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Interview 3-29-05). One thing that seemed consistent throughout the
programmatic changes at ETE was that he seemed to feel he had gotten and
continued to get a lot of support from ETE. Once he showed me the framed
picture he had made that still hung on the walls at ETE. It had apparently
been photocopied from the original picture he had made.
Well, like that picture. You know, um, it overlapped, because I could
only photocopy it one way, and so, I didn’t know how to set, cut it off
so that it would connect correctly. The time when Cathy was here,
she knew someone who would be able to do that, and to this day I
don’t know how they did it so they could cut it and it could connect
correctly, in symmetry or whatever you call it. And uh, you know,
like I said, where else would I go for someone to do that but here. I
mean that’s just, that’s probably the best example. And also, that they
frame the certificate of when I was working, just like they do with
other people. They really take pride in you and, and rejoice in you,
and celebrate you. (Frank Interview 3-29-05)
Going to Work
“One thing led to another and I decided I’d end up in retail”
Frank worked with ETE for a few years under the programmatic focus
on learning through actual work before they helped him get a job working at
a local grocery store as a courtesy clerk.
So then, one thing led to another and I decided I’d end up in the retail,
which I’m doing now, at uh, as a courtesy clerk, at uh, Ralphs, cause
uh, after all that schoolwork that’s all I ended up doing. But the good
thing is, that, if I keep at it, and I asked this from them, they could use
my Public Administration as management degree, so that I could,
once I move up the ladder a little bit, I could do, be manager. I asked
them and they said it would be alright. (Frank Interview 3-8-05).
Frank never described a hope to go into retail, however ETE was able to find
him work as a courtesy clerk and he was willing to take the job. The
interesting thing was that after taking the job, Frank was able to re-process
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his hopes to incorporate some of his previous hopes for working in finance
and administration by thinking about working his way up the ladder into
management at the grocery store.
“Ever since I’ve worked there, I’ve changed immeasurably”
Though working at a grocery store was not his first choice, Frank was
able to see the ways that working had benefited him in his recovery. He
explained that even the social worker at ETE, Kim, could see the benefit.
I don’t know. You can even ask, uh, Kim. Ever since I’ve worked
there, I’ve changed immeasurably, you know, from, the uh, person
that speaks off tangent in group, (um) to the clear speaker that I am
now. My psychiatrist sees it. My mother sees it. My father sees it.
Uh…you know, Kim sees it. And uh, you know, so many people see
it. (Frank Interview 3-8-05)
“This has to be solved”
Despite the progress towards recovery from mental illness that Frank
recognized that he had made while working, he continued to struggle with
keeping his job. He had gone up and down in the number of hours he was
working as he tried to balance his desire to work with his problems associated
with his mental illness. After a few months of getting to know him, he
became really distressed because he felt the symptoms of his mental illness
were interfering with his ability to work. The following is an exchange in
which he explained to me what he was feeling as he struggled to keep
working.
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F: Unfortunately I, I’m not adjusting well to work, and it’s showing,
you know. This time it’s showing, before I could talk about it and say
well, you know, I feel this way. Now it’s showing, now it’s actually
showing.
S: What do you mean that it’s showing?
F: You know like uh, the, my eyes are moving around, I keep bending
forward, backward—
S: Has somebody said something to you about it?
F: No, I, I notice it.
S: Oh, ok.
F: You know, like someone, someone who’s uh, delirious, who’s on
drugs and at work. You know, and you can’t have that, you can’t have
someone who’s paranoid and, you know like delusional and at work.
That’s not gonna work.
S: Right. Hm.
F: So, I feel like I tried, you know, I really tried. But um—
S: What about—
F: The way that I’m acting is a clear indication that uh, either this has
to be solved or I, I, I don’t, I don’t see how I’m gonna be benefiting
anyone. (Frank Interview 7-11-05)
“But I just can’t be an object, you know?”
He had been feeling as though people around him – friends, family
and ETE staff - were pushing him to stay at the job. He talked about his
frustration with the job and the pressure he felt to stay there even though it
wasn’t a job that used his skills and education. He seemed to feel that others
were telling him that he should just consider himself fortunate because there
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were people who had it worse than he did. He thought people were not really
hearing and validating his feelings.
But I just can’t be an object, you know? You know how like a tramp
is an object, they sell themselves on the street. That, I, I feel worse
than that. I don’t, I’m tired of being like an object, just being pushed
to the limit. Like it’s my problem and it doesn’t matter, and because
I’m not hungry, I’m not starving, I’m not this, I’m not that, you know.
That’s not acceptable to me anymore. (Frank Interview 5-10-05)
“Social security could, should give me more money”
Related to his frustration with working at a grocery store as a courtesy
clerk, he wondered why he should have to struggle so much. He wondered,
like many of us with a philosophical bent, why it couldn’t be different.
I, I feel, you know like, I, I, social security could, should give me
more money simply because of the fact that I’m an idealist writer.
Even though I haven’t produced. Because it’s very important, what I
may write, whatever science can’t provide. I may be the link, the
missing link that, that could help the rest. (Frank Interview 3-10-05)
Though he continued to struggle with staying on the job at the grocery
store, most of the time he was willing to try to stay with the job, as the staff at
ETE advised him to do. He went on in this same interview to say he wanted
to go back to ETE and talk to them about all his job difficulties and see what
they said.
“I’m not gonna let Mark manipulate me and say, well you can’t
quit”
The one complaint that Frank voiced about his interactions with ETE
was in the midst of his struggling about whether to quit his job at the grocery
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store. He felt unhappy with ETE because he thought he was being pressured
by the staff there to keep the job. Frank had been frustrated with his job. He
felt that it was not going well. He told me “So I’ve made up my mind, you
know. Maybe it’s time after seven months I stop working there. Because it’s
real hard (Frank Interview 5-10-05).” He finally was determined that he was
going to quit whether Mark, his job coach at ETE, liked it or not.
And I’m, I’m, that’s the way I’m gonna do it, I’m not gonna let Mark
manipulate me and say, well you can’t quit, you can’t, don’t quit, you
know, don’t be a—and then start raising his voice and that kind of
thing. (Frank Interview 5-10-05)
ETE Closes
“It didn’t work, did it?”
After ETE had asked for more funding from contracts with the
Department of Mental Health and the Department of Rehabilitation and been
turned down, they decided to close. Before they closed though, Frank had
been asked by the staff at ETE to do an interview with a local newspaper to
discuss how important ETE was to him. I asked him how that had gone. He
replied “It’s uh, aimed at helping us, uh, not have to close, not them having to
close down, but it didn’t work, did it” (Frank Interview 7-11-05)? ETE had
been working under the same contract for reimbursement for several years
with no raises for staff. Bob, the director, had been told that the only way to
get more funding would be for ETE to become a more traditional mental
health treatment program. ETE refused to alter its program or accept the
contract at the same rate. So, it closed its doors.
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“I guess you have to look for other ways”
In a later interview, as Frank continued to struggle at work, he talked
more about how difficult it was for him to continue working and how he
would normally meet with the mental health case manager at ETE about
these struggles. At this point, ETE had already closed and the participants
were referred to other programs for mental health and employment services.
I asked Frank what he thought about ETE closing. He replied somewhat
nonchalantly “Um, …interesting [laughs], interesting and uh, oh I guess, you
have to look for other ways, that, that’s what it means, you have to look for
other ways, you know” (Frank Interview 7-11-05).
“I gotta, uh, be more valuable than to depend on something
outside of myself”
Again, as with Demetrius, I wondered about Frank’s seemingly slight
response to ETE’s closing. I thought perhaps it might have been that both
Demetrius and Frank shared some of the same coping strategies because of
their experiences. Encounters with the mental health system and job finding
frustrations had entailed a lot of disappointment and frustration with which
they had learned to cope. I also wondered if coping with ETE closing may
have been more difficult than the participants wanted to acknowledge, so
they minimized the impact. This idea was confirmed somewhat by another
statement Frank made:
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For whatever that happens, whether I can’t go back to ETE or
whatever. You know, I, it can’t be my fault, I, I gotta, I gotta, uh, be
more valuable than to depend on something outside of myself, no
matter what it is. (Frank Interview 7-11-05).
After ETE closed, similarly to Demetrius, Frank waited several months
before another agency began to work with him actively again. He finally
began to receive case management through a local mental health program.
He also worked with the Department of Rehabilitation for job placement.
Throughout all his difficulties with job finding and job keeping, and
throughout his working with ETE, Frank continued to struggle with his
mental illness. Despite the difficulties, Frank seemed to be quite active in
seeking his own recovery. In the following section, Frank was able to share
some of the strategies, resources, and ideas that had been helpful to him in his
recovery.
Frank’s Struggles with Mental Illness
“So then I say to myself and hit me like a ton of lead”
During the time I was meeting with Frank, he continued to struggle
with his mental illness. Despite the difficulties Frank had in living with his
mental illness, he was very creative and persistent in finding tools for his own
recovery. He told me about how he finally was able to deal creatively with
his obsessions about closing or locking things.
But you know what I do now, every time I want to make sure, uh, I’ve
locked my car or I’ve closed the door, the major things at least. Um,
there’s a song by Z.Z. Top, you know that group? [sings] Give me all
your loving, all your hugs and kisses. So then I say to myself and hit
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me like a ton of lead. Every time I lock the door, I say to myself, and
hit me like a ton of lead. And then when, uh, I want to make sure I
close the garage door, I repeat that afterwards. I just do it and surely
enough, I never have to obsess about it again.
(Frank Interview 3-29-05)
“There are several books that helped me”
It seems that much of the way Frank was able to cope with his mental
illness, as well as other struggles in his life for employment and relationships,
was by reading. He read books that he found to be helpful to him in his
recovery from his mental illness. He also looked for strategies to help him
with other areas of his life.
That’s uh, you know there are several books that helped me. The one
about myth taught me that first of all even handicapped people don’t
have to be afraid because of their condition, because they just have to
learn to accept. I don’t know exactly how he phrased it, but he
phrased it, the author phrased it so wonderfully that I wasn’t afraid if
something like that happened to me. Where I was physically,
something happened. Because he explained in a way that you can just
surrender to it. I can’t exact…I don’t remember the words exactly but
it was the only way to write about it and he hit it right on the spot.
And it amazes me because he’s in perfect health but he has the
audacity to talk about something, an ailment like that and uh, that’s
very powerful to me. And another thing is he brought me in
connection with myself as not my own center, but how I relate to
everyone else. This is Joseph Campbell with his interview with Bill
Moyers, the journalist reporter on The Power of Myth. (Frank
Interview 3-15-05)
“So then you have ups and downs, and all this is reflective of
schizophrenia”
Frank sometimes seemed hopeful about living with mental illness and
other times he would express frustration. In this passage, he describes some
of the ups and downs.
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Yea, but that’s the thing about mental illness, I think, that nobody
talks about, it gets to you when you get older. Then you start to
become a creative person and this person and that person, so then you
have ups and downs, and all this is reflective of schizophrenia. (Frank
Interview 3-8-05)
“So they have all these labels to hide everything that is good that
you could provide”
Frank then went on to discuss how mental illness labels get in the way
of people being able to see all that a person is, and of what he/she might be
capable. “So they have all these labels to hide everything that is good that
you could provide but you’re not able to yet” (Frank Interview 3-8-05). At
other times Frank was more hopeful about living with mental illness: “And as
my writing progresses, and as I moved on through life, I’m getting less and
less overwhelmed” (Frank Interview 3-15-05).
“If I had done everything correctly at that point, then I wouldn’t
have had the ability to do things now”
Frank was also philosophical about having a mental illness as he
struggled to find meaning in the experience.
The same time that I started having obsessions about things I’ve given
away or lost or destroyed or for some reason wasn’t able to keep.
And that was in 1986, but the interesting thing about not having
things I wanted and didn’t know why is because it was all part of the
grand creation of the design of my book. At the time, I didn’t know
it, but I was lacking knowledge in that. That’s why everything
seemed so elusive, seemed to slip out of my hands so easily. It was
designed so that I would come to this point in time. Because if I had
done everything correctly at that point, then I wouldn’t have had the
ability to do things now. (Frank Interview 3-29-05)
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“You can’t wish to be a cheetah if you’re a leopard”
He also tried not to think too much about why his life was different
from other people’s, but instead to be more accepting and philosophical.
S: Do you feel like your struggles are more different from other
people’s struggles, or…?
F: Well, like the author in this book I’m reading says, you can’ wish
to be a cheetah if you’re a leopard or a leopard if you’re a cheetah,
you can’t have a long neck like a giraffe if you’re a dog, and I try to
think of it that way so I don’t get down on myself, why am I not this
way instead of that way? But, uh, other than that, uh, I do feel, yeah,
that I have maybe more struggles. I would be amazed if there’s
someone else who’s going through particularly the same things I am.
(Frank Interview 3-8-05)
“It’s just about mental illness and nothing else”
Frank talked quite a bit about his struggles to understand why it had
been so difficult for him to become a writer and create the meaningful life he
envisioned. He described his frustration about the way different domains of
life are carved out and assigned to different professionals who don’t talk to
each other, since life itself doesn’t operate in discrete domains.
F: Well, it would be nice if there was a group of people who would,
uh, like, review the news and give us more information about how it
relates to the rapture. But how would they know that unless they
knew this person that I know on television and so on and so forth. So,
nobody is in touch with anyone else. It’s just about mental illness
and nothing else.
S: You mean like psychologists don’t speak with preachers and…
F: Yeah, there’s no connection. There’s no focus of anything except
mental illness. Nothing else, just simply that and that’s it. How do
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you make this person lose weight so that they don’t have pain. That’s
not considered before the medication. (Frank Interview 3-8-05)
“Nobody can help you like yourself”
Another way Frank coped with his mental illness was often by trying
to make connections himself between science, medicine, religion, and his
experiences, so as to better help himself. He had a strong belief in a person
with mental illness ultimately needing to help his/herself.
You can’t, you can’t, you know, nobody can help you like yourself,
especially if you’re a baby for the longest time. You know, if
someone else is gonna be the way that I was, there’s nothing I could
write to them that could help them. They gotta train their own mind
just like I did mine. I don’t, I don’t think there’s a single person who
could be a specialist in solving problems for someone else that, where
it really hurts. You know, you just have to, you do without, and and
pray and whatever, but you know. All this stuff about taking
medication and seeing this person and that person, it’s a lot of wasted
breath, you know. Like a lot of gibberish but nobody says anything. If
they say it once, why do they have to say it again, and so on and so
forth. (Frank Interview 4-26-05)
“I wanna have artwork. I wanna have the job. I wanna have
writing”
Perhaps because Frank had become frustrated at times trying to cope
with his mental illness, he did cast about for possibilities of help. He wanted
to have the rich meaningful life that he felt he was capable of. Once he came
to a scheduled interview and he was really frustrated with his work at the
grocery store. While he was struggling to cope with that frustration he told
me about some new medical developments he had heard about on NPR that
might be able to treat mental illness more effectively. He was so excited and
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hopeful that he told me “I immediately called my psychiatrist and asked him
about it” (Frank Interview 5-10-05). His psychiatrist told him about two
additional experimental treatments that were in the works. Frank decided to
do more research on his own at the library, and he felt the treatments were
promising. “So it got me thinking, damn, I’m this close and I wanna have
artwork. I wanna have the job. I wanna have my writing. I’m this close.
What am I gonna do?” (Frank Interview 5-10-05).
As I worked on this manuscript, I kept in contact with Frank. He
continued to work with the mental health program for case management.
ETE continued its quest for alternate funding. As a step towards re-opening,
ETE accepted a contract to provide employment for people to do piece work.
Frank went to work with them a few hours a week.
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Lloyd’s Occupational Story: “I wanna be rich”
Introduction and Overview:
It is virtually impossible to tell Lloyd’s story without talking about a
primary organizing hope of his – to be wealthy. I’m not sure if prior to
meeting Lloyd, I had considered the pursuit of wealth as an occupation.
After talking to Lloyd and getting to know him, I began to think the pursuit
of wealth might be an occupation – perhaps a kind of meta-occupation that
organizes many individual occupations. In her book entitled Feeding the
Family, Marjorie DeVault (1991) discusses how feeding a family is a kind of
umbrella task that encompasses many other individual tasks such as menu-
planning, shopping, eating, etc. Similarly, Lloyd’s desire to become wealthy
was woven throughout his occupational history and in discussions of work,
religion, relationships, and many other aspects of his life. This hope for
wealth also helped organize how he went about these other occupations.
Lloyd spent much time and energy thinking about, asking about,
dreaming about, and working on becoming wealthy. In our very first
interview on 3-10-05, he said of his goals/hopes/desires, “I wanna be
wealthy.” He discussed this desire to be wealthy frequently in subsequent
interviews saying what he wanted was “to be real prosperous” (Lloyd
Interview 3-10-05) and saying “I wanna be rich, be prosperous and I wanna
be, be a big tycoon, like, like the big giants are, like General Motors, stuff
like that” (Lloyd Interview 7-7-05). In yet another interview Lloyd explained
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"I can be a, a Christian, serve God, and be very, very, extremely wealthy”
(Lloyd Interview 5-4-05).
His pursuit of other occupations was related to this overwhelming
desire to be wealthy. We had many conversations in which he talked about
how he might become wealthy. Lloyd talked to me about the possibility of
becoming wealthy through gambling. He suggested that he might have
become wealthy by wagering against his van in Las Vegas: “If I would’ve
bet my van on there, probably win all kinds, like hundreds of thousands”
(Lloyd Interview 7-7-05). He saw gambling as an avenue to fortune:
L: Well, I kinda thought about betting my van at a table, if I’d won
the jackpot, uh, slot machines, progressive jackpot…. What’d you
think of betting your car, is it, is it the highest form of greediness, you
think it’s greedy? Play the tables in Vegas?
S: It’s a lot of risk, that’s for sure. Couldn’t afford to lose it, I’d be in
big trouble.
L: Ah. Just thinking about all, all the prizes and all the money you
could win if you did win if you bet your car. There’s such a thing as
what’s called a “push,” you either win or you lose. (Lloyd Interview
7-18-05)
Another plan for wealth came up over the course of several
interviews. Lloyd talked repeatedly about his desire to inherit wealth. “That
would be nice to have $25,000 dollars in a will inherited from my uncle, or
maybe even $40,000” (Lloyd Interview 3-10-05). Apparently Lloyd had
built some of his hopes for wealth on the possibility of inheriting money or
property from a rich uncle who had died.
L: Always uh, felt I’m the right person to have, be in my uncle’s will
because he had a lot of property and everything, I thought he would
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leave me the, some property, the house or the apartment building,
duplex or something like that.
S: Uh huh.
L: That’s what I was hoping that would happen before he passed
away. (Lloyd Interview 5-4-05)
In the case that he didn’t inherit money from his uncle, Lloyd had also
been hopeful that his avenue to wealth might be through inheriting his
uncle’s company.
L: I would inherit, I would inherit the engineering company that my
uncle had, rather do that than painting because it’s worth millions,
tens of millions of dollars.
S: Ok, so the painting to you is mainly a source of income—
L: Source of income, yeah.
S: --And if you could do something else that made more you’d
rather—
L: Right, I rather run, have, my uncle’s company had a big aerospace,
he owned a big corporation himself and he was one of the smartest in
Kentucky, uh Kentucky, Florida, and California, three places. (Lloyd
Interview 5-4-05)
Though at times Lloyd talked about the fact that he hadn’t inherited
the money from his rich uncle who died, he hadn’t given up hopes of
inheriting wealth. He soon turned his attention to the fact that he might still
inherit money from his cousin – the son of the rich uncle.
I might get all that money from big inheritance from my cousin
Mills…. I might get all that money for being, have a big huge
inheritance. (Lloyd Interview 7-7-05)
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“I can’t have real property or be a landlord if I’m on SSI and
Medi-Cal”
Although Lloyd devoted a lot of mental energy to thinking about
various ways he might become wealthy, he also devoted some energy to
thinking about the problems he might encounter with the disability system if
he had a lot of money. “The thing is that my dad’s cleaning up the house in
Temecula, it’s not mine because I can’t have real property, or be a landlord if
I’m on SSI and Medi-Cal” (Lloyd Interview 4-28-05). In another interview
he talked about thinking he might get dropped from the disability system if he
made too much money:
L: I’d have to pay all my doctors. I could be close to $70,000 in
losses because I tried to renig, tried to take a shortcut.
S: Yeah, well hopefully that won’t happen though, that, that would be
really hard.
L: I wouldn’t, I wouldn’t be living there in the home anymore, I’d be
living with my brother and sister-in-law.
S: Yeah—
L: Cuz I wouldn’t have any money to pay the rent there because I get
cut off, knock, knocked off of SSI. (Lloyd Interview 7-7-05)
“Why do you think you should get $100,000 a year?”
Lloyd was aware that many people were skeptical of his ability to
become wealthy. He talked to me about the negative feedback he often got
about whether such wealth was possible for him. I once asked him about
whether people ever tried to discourage him or told him his goals were not
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realistic. He said “Lots, everybody’s told me that. Everybody says I can’t
even make $5,000 a year, why do you think you should get $100,000 a year?
Lotta people say that” Lloyd Interview 7-7-05).
This pursuit of wealth was as an organizing theme for many of
Lloyd’s occupations during the course of his life and an important place to
begin his story. With this understanding, I will now begin by describing
Lloyd’s experience of being diagnosed with a mental illness. Then I will
discuss his occupational choices across his lifetime – from high school to the
time of this study. I will particularly focus on his work, religion, and
involvement with ETE. Finally I will discuss his hopes and how he coped
with the critics of his hopes.
Lloyd is Diagnosed with Schizophrenia
According to Lloyd, he was diagnosed with “something” when he was
a child, though the diagnosis of schizophrenia seemed to come later in his
life. He wasn’t quite clear what the diagnosis was that he received as a child.
S: Um, when did you get diagnosed with your mental illness?
L: When I was a little child.
S: When you were young?
L: About five years old or some…, something like that. Six years old
maybe.
(Lloyd Interview 5-4-05)
When I asked him more specifically about schizophrenia, he explained how
he was diagnosed as an adult.
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Doctor Hector and Doctor Grainger over at Torrance, a medical
doctor, he says I’m schizophrenia because uh, I’m seeing a girl and
we’re uh, my parents told them that I’m getting married to this
woman from the Singles at Trinity Church. And, and, he says, being
both her and I are very, very retarded and way off our rocker, and
then Doctor Grainger set the family counsel with me and my mother
and dad. And her parents said me and her have lost all our marbles at
least a hundred times in our lifetime or more.
(Lloyd Interview 7-7-05)
Lloyd also described receiving other diagnoses.
Yeah it’s a case manager and, and uh, one of those people told me
that my problem is retardation, not autism. My dad thinks autism but
the form says it’s retardation being the disability, limitations on it.
And uh, the psychiatrist in the home says it’s near one of those, it’s
called depression what I have.
(Lloyd Interview 7-7-05)
Lloyd, more than any of the three men, described a lot of prejudice
and disparaging comments as a result of his mental illness. “Yeah, they
called me retarded, also. Hell, called me moron, smelly, disabled also”
(Lloyd Interview 5-4-05). He seemed to struggle with his aspirations versus
the negative feedback he received. The following is one encounter he
described that occurred in a job situation. “I thought, I thought I had a thirty
dollar an hour job, but the guy was just playing, messing with my head”
(Lloyd Interview 5-4-05). He even received a hard time from some people at
his church.
People at Trinity Church would give me a hard time, say I can’t go on
men’s retreat, can’t do this, can’t do others. I’m too mentally sick.
And if it was a men’s retreat I might get into trouble with a woman by
picking up on her, and go to jail with her, and they’ll be responsible
for getting me out of jail. That’s why they don’t want me on a, on a
men’s retreat because I’m too much of a womanizer. I want to get
married and find a girlfriend. That’s why they bar me from a lot of
things at Trinity Church, cuz I’m too, a high desire with women.
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Later he said that one of the Pastors at Trinity Church had slandered him by
calling him “retarded” and that he had complained to the church board.
Lloyd also described prejudice within his own family. I once asked him if he
left the group home to visit his family on the weekends. This was his
response:
[I] see my uh, brother and sister-in-law sometimes too. But uh,
they’re kinda, frown on me cuz I’m a disability. My brother and
sister-in-law, they think that I might get in trouble there, and they’d
have to bail me out or something like that. They think that, that they
have to be responsibility over me and they don’t wanna do that
because they got their own life… (Lloyd Interview 7-7-05)
Lloyd also described difficulties in getting jobs because of his mental illness.
S: Did you ever have things that um, like your mental illness got in
the way of doing?
L: Yes.
S: Like what kind of things?
L: Construction. Working mechanics, stuff like that. Many things.
S: And how did it interfere?
L: Even being in painting, mental illness has affected me. Affected
me in getting the good jobs, end up taking the low-paying jobs at
minimum wage, ten dollars an hour. Cuz I have mental illness. And
when I went to an interview and asked for twenty-five an hour like
two years ago and she laughed me off the property. I told her I’d do it
for twenty-five an hour and she laughed, this is at least three, four,
five years ago.
S: Did people know you have a mental illness?
L: Yes.
S: Did you tell them or the—
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L: No, uh, rehabilitation told them that. State Department of Rehab.
(Lloyd Interview 4-28-05)
Similarly to Frank, Lloyd tried to find something positive about his
experience of living with a mental illness. I asked him if he had anything he
would like to tell people about living with a mental illness. He responded: “I
don’t know, be a blessing to other people. Like uh, Brother Dan is a blessing
to me, and I like to return the favor and be a blessing to him” (Lloyd
Interview 5-4-05). Thus Lloyd described a lot of stigma and prejudice
towards him because of his mental illness. Despite these negative
encounters, he seemed pretty upbeat in our time together and still felt that he
should “be a blessing to other people.” In the next section, I will continue
Lloyd’s story with his occupational desires and pursuits in high school.
High School
“I wanted to be a…. musician”
Though when I met him, Lloyd was looking for work as a painter and
had done painting much of his adult life, he hadn’t always pursued painting
as his vocation. I asked him once in an interview if he had wanted to go into
the painting business when he was in high school. We had a little
miscommunication about his desires as I misunderstood what he was saying,
but I eventually understood as can be seen in the following passage:
S: What um, what about when you were in high school? Did you
wanna be a painter then or did you wanna be something else?
L: Be something else.
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S: What didya wanna be?
L: A magician I thought…
.
S: ….A magician? How come you got interested in being… a
magician?
L: Because I figure I had the knack to play the guitar.
S: Oh a musician?
L: Yeah…and I didn’t do it…
S: You took lessons?
L: I took lessons and they wouldn’t accept me in any bands, cause I
had, I couldn’t play well enough. I was diabetic back then as I am
now, and everything. (Lloyd Interview 5-2-07)
Lloyd didn’t end up becoming a musician because he said his diabetes
interfered with his ability to play by impairing his ability to use his hands to
create the chords. So, Lloyd continued to search for a vocation. This search
would later lead him to college. Lloyd also became interested in religion
during high school as I will describe in the next section.
Pursuing Religion
“If you… let God do it, he’ll make me very wealthy and
prosperous”
While he was in high school, Lloyd developed an interest in religion
and began attending Trinity Church. This particular church supported his
hopes and desires to be wealthy. In one interview, he described Trinity
Church as a health, wealth, and prosperity church (Lloyd Interview 4-28-05).
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He took me by the church to see it once. Though it wasn’t very ornate, it
occupied quite a large area. The buildings were interconnected and more like
a school campus. I wasn’t able to get a clear sense from Lloyd which came
first - his involvement in this church, or his interest in becoming wealthy. In
another interview, Lloyd was describing some well-known evangelists and
what it was about them that appealed to him. Again wealth was a primary
theme as he discussed being attracted to their message of God making his
followers wealthy.
L: And I like to go to, Benny Hinn’s crusade because they’re very
uplifting, and the gifts of the Holy Spirit and everything. I saw Benny
Hinn twice at a crusade, in the past, (hm). He was real good. So was
Kenneth Hagen, so was Oral Roberts, and T.J. Hicks, and people like
that (hm). I don’t know about Jim Jones, I haven’t been to that one
yet.
S: What do you find helpful about what they say?
L: That, uh, if you follow God, and, and, let God do it, he’ll make me
very wealthy and prosperous. Have my business prosper like crazy.
(Lloyd Interview 3-10-05)
His involvement with his church and religion was related not only to
his interest in doing what he believed in religiously but also in the pursuit of
wealth. In the following passage, he explained how Trinity Church’s
teachings about God and about wealth were important to him: “Yes. Cuz, I
like going there because I can be a, a Christian, serve God, and be very, very,
extremely wealthy (Lloyd interview 5-4-05).”
Though Lloyd wanted to be rich and felt that Trinity Church could
help him fulfill his hopes of becoming rich, he also thought that becoming
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rich would be proof that he was living the way in which God wanted. In the
following passage, Lloyd is responded to my question about whether he
would be satisfied if he made enough money to pay his bills or if he would
still want to be rich.
I wanna be wealthy because the Pastor Frank Smith at Trinity Church
says “Jesus Christ wants us all be wealthy, to be prosperous, to be
entrepreneurs, and stuff. You just follow God and do it his way.” If
you go to another church and do it your way and you’re selfish, you’ll
be around minimum wage, $10 an hour for a long time. I don’t want
that to happen. (Lloyd Interview 3-10-05)
Lloyd described similar ideas about how the pursuit of wealth and the pursuit
of religion were linked in another interview.
L: This church is the richest church in the whole wide world. Uh, all
of Trinity Church, there’s a lot of other Trinity Church’s, not just this
one.
S: Oh there’s a lot of them?
L: It’s even, it’s even richer than the Mormon, the Catholic, and
everything all put together.
S: Wow.
L: I’m going here because I wanna be rich, be prosperous and I wanna
be, be a big tycoon, like, like the big giants are, like General Motors,
stuff like that. That’s why I go here.
S: Mm.
L: Once you start coming here, if you wanna go up that corporate
ladder, start climbing it real fast.
S: Hm. Now, what would you do if you had all that money, what do
you wanna do—
L: Get a company, run it, and and and have, let the Lord guide me
how to run all the stuff. (Lloyd Interview 7-7-05)
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In addition to his attachment to Trinity Church, Lloyd had a particular
fondness for one of the Pastors there – Brother Dan. Once he told me “my
religion means a lot to me because I knew Brother Dan since I was, getting
into high school. He’s the pastor at Trinity Church” (Lloyd Interview 5-4-
05). Lloyd once described Brother Dan to me as a man in his sixties, the
assistant pastor of Trinity Church and one of its founders. Brother Dan was
someone that seemed to be supportive of Lloyd and was important in his life.
I will discuss more about Lloyd’s relationship with Brother Dan later in this
chapter.
College
“I was studying, uh to be an engineer”
After high school, Lloyd did spend a short period of time in college,
in technical school. He had mentioned in an interview how he wanted to go
back to college, so I asked him about when he was in college before.
S: Did you go to college before?
L: Yes, I went to college and didn’t quite, uh make it.
S: What were you studying?
L: I was studying, uh to be an engineer. I studied air-conditioning. I
tried, uh, auto-body, electrical and couldn’t do either one because it
was very complicated. (Lloyd Interview 3-10-05)
Perhaps Lloyd had decided to pursue engineering as a degree because his dad
was an engineer. Whatever the reason, after several attempts at pursuing
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different technical degrees, Lloyd gave up on college for a while. Instead, he
decided to go to work.
Work
“My dad helped me get into the paint business”
After attempting to get a technical degree in college, Lloyd got some
help from his dad in pursuing another vocation – painting houses. He got
started in house painting in his early 20’s and was still doing painting jobs in
his 40’s when I met him at ETE. He told me in an interview once how he got
started painting houses.
S: So, um, I don’t remember if you were telling me before, how, how
you got interested in painting. You said your dad was an engineer…
L: My dad was an engineer, and uh, painting, he had his own general
contractors that worked under him, and, and he, uh, my dad helped
me get into the paint business.
S: So he had people doing painting for him?
L: Yes.
S: And you started doing painting with ‘em?
L: Yes. (Lloyd Interview 4-28-05)
Painting houses was also connected to Lloyd’s desire to be wealthy.
He often described his desire to become wealthy through owning his own
painting business.
S: For you painting, do you have a goal?
L: Being a CEO and having a big corporation, a painting company.
(Lloyd Interview 5-4-05)
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In the same interview, he described in more detail his hopes for becoming
wealthy through owning his own painting company:
S: Mm. ’Kay. Can you um, tell me, what does it mean to you to have
your own painting business?
L: Well it means I’m being responsible and God will bless with a very
rich wife or something like that in the future. And Brother Dan says,
the pastor at Trinity Church over there, that if you open up the
windows the blessings will all pour out on me from heaven. If I be a
beam to God, even uh, as much as up to $32 million, that’s what
pastor Brother Dan says. (Lloyd Interview 5-4-05)
Lloyd even had business cards made for his painting business. He said he
had been able to secure some painting jobs in the past. This fact was attested
to by the large van he drove that was crammed full of painting supplies.
Some of the supplies were well used and appeared to be left over from
previous jobs he had done, while other supplies looked newer, as though they
might be used for possible future jobs. He explained that Mark, from ETE,
had been trying to help him organize the supplies in his van and clean out
some things that he no longer needed or used. Mark had told him that being
well organized with his supplies would make a good impression with people
who might wish to hire him to paint. The problem was that he had nowhere
to store the extra supplies and he didn’t want to get rid of them. So mostly
his van remained crammed full of supplies.
“Rather do that than painting because it’s worth millions”
Since becoming wealthy was Lloyd’s overriding concern, I wondered
if becoming wealthy through owning his own painting company was his first
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choice or just the one with which he was most familiar and comfortable. I
asked him in an interview if he really liked painting or if he would do some
other type of work if he could make more money at it. His response is in the
following passage.
S: What about um, painting? What about that do you like?
L: Running my own business, having the guys work for me and….
S: But the actual painting, do you like doing that?
L: Yes, I like doing that, yeah….
S: How do you find painting jobs?
L: …Well they, they just pop up because I have a good reputation of
word of mouth and everything but I don’t have to handle the paint
business that, I would inherit, I would inherit the engineering
company but my uncle, rather do that than painting because it’s worth
millions, tens of millions of dollars.
S: Ok, so the painting to you is mainly a source of income –
L: Source of income, yeah.
S: - And if you could do something else that made more, you’d
rather—
L: Right, I rather run, have, my uncle’s company had a big aerospace,
he owned a big corporation himself and he was one of the smartest in
Kentucky, uh Kentucky, Florida, and California, three places. (Lloyd
Interview 5-4-05)
Lloyd also discussed how people gave him a hard time saying if he
had gone into fast food and worked his way up, by now, he could have
already become a CEO.
L: Wish I could have one [a cell phone], but I can’t afford it, not
working. …I think I’m way too old to work at a place like
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McDonald’s, flipping burgers, stuff like that. Should’ve been a long
time ago, when in my 20’s, 30’s, when I could’ve had...
S: Did somebody tell you, you should do that?
L: They told me should’ve done it a long time ago, and I would’ve
probably made a CEO by now, or, or a corporate manager. (Lloyd
Interview 7-18-05)
So Lloyd had moved from early hopes of being a musician to working
as a housepainter. Along the way he had tried to get technical training in
other areas such as electrical engineering but was unable to complete the
degree. His interest in housepainting seemed to be mostly a matter of
exposure since his dad had a crew that did painting and helped Lloyd get
started. Lloyd clearly stated that he would be happy with other work if he
could find something that paid better. Lloyd once told me that he was one of
the few people at his group home who worked. He did pursue some leisure
interests as well as working, but his options were somewhat limited due to
living in the group home. I will discuss this more in the next section.
Leisure Occupations
“I still have hobbies I used to do, and I’d like to get back to it
again”
One leisure interest that Lloyd pursued periodically was fishing. He
told me in an interview on 5-4-05 that he liked both saltwater and fresh-water
fishing. In the same interview, he described a fairly recent fishing expedition
he had been on.
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S: Did you catch anything?
L: Uh, no. Had a good time. I caught something, got away. It was way
too big for check line.
S: Oh yeah? How big about?
L: The check line goes up to 25, then goes 30-something out.
S: Broke the line?
L: Fish broke the pole. All. Side is cracked.
Lloyd mentioned several other leisure interests but most of them he
wasn’t doing often, or sometimes not at all. He told me in an interview on 7-
11-05 that he wished he lived near the water so that he could engage in
fishing and swimming and other water sports that he had pursued previously.
In the following passage he described interests and hobbies he once pursued.
L: Ye—Yes. I still have hobbies I used to do, and I like to get back to
it again, like used—fishing, things like that, surfing. Used to surf
when I was a kid, be a surfer.
S: And what made you stop?
L: Getting too old for it, got dizzy, got, my, my company that I
inherited from my uncle. Inheritance, have to watch after.
S: So you don’t go fishing anymore either?
L: No, not very often.
S: And you said it’s hard to go scuba diving cuz it’s expensive.
L: Expensive, yeah, right.
S: Do you have other things you do though, just for fun?
L: Going on vacations with my parents.
S: Where do you go?
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L: Cruise and stuff, see relatives, different things like that.
Lloyd mentioned not pursuing some interests due to access issues
from living at the group home, expense, and his age. He was the only one of
the three research participants who lived in a group home. I once asked him
what kind of things they had at the group home for fun and he replied
“Bingo, darts, uh games, group discussions, things like that.” (Lloyd
Interview 4-28-05). These were things that were done easily and cheaply at
the group home without the need for transportation to another site. Another
leisure interest Lloyd enjoyed was watching sports, which he had access to at
the group home. He described his interest in sports in the following passage.
L: Yes I like it. [Long pause] Well the Dodgers, if they’re gonna get
in the play-offs, they gotta beat the Yankees, Red Sox or the Marlins,
get way past them to get in the play-offs, which would be pretty tough
for the Dodgers. Dodgers uh, doing pretty well at first, then lose
everything in the end. They probably got clobbered real bad by now. I
think the diamondbacks or, or the red sox, probably.
S: You like sports a lot?
L: Yes.
S: What’s your favorite sport?
L: I like them all. (Lloyd Interview 7-7-05)
Thus, based on Lloyd’s interviews, activities other than work were
fairly limited. He mainly engaged in inexpensive leisure activities that were
provided by the group home. Other activities were too expensive or too
difficult to access. He was only able to engage in some leisure occupations
that were more expensive, such as traveling, through his family.
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In the next section, I will describe Lloyd’s interaction with vocational
services. The primary service with which Lloyd had worked was ETE. He
had had some brief contact with other vocational services.
Getting Help from ETE and other Vocational Services
“[Been going to] ETE, about 5 years now”
Even though Lloyd had worked some on his own, he seemed to have
some difficulty locating jobs. Perhaps because of his difficulty locating jobs,
or locating the kinds of jobs that he wanted, Lloyd had begun working with
ETE about five years before I met him. As I mentioned previously, his pastor
– Brother Dan – had seen the ad about ETE in the paper and helped Lloyd get
connected to ETE for services.
S: How long have you been going there?
L: ETE, about 5 years now, something like that I think. (Lloyd
Interview 4-28-05)
“Somethin’ to do with rehabilitation”
Prior to working with ETE, Lloyd had worked with another
vocational program. This other program obviously hadn’t made a big
impression on Lloyd since he couldn’t remember too much about it.
Ultimately, the other program wasn’t successful in helping him find work.
S: Were you in another program or something before…
L: Yes, another program, yes.
S: What was it?
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L: I don’t remember. I know it was, uh, rehabilitation. Somethin’ to
do with rehabilitation.
S: So it wasn’t necessarily a work program?
L: I think it was a work, trying to get jobs, now, back then what I was
doing now.
S: Did they help you get a job?
L: They helped me get one but the people wanted someone with
more experience….They said back there, we’ll pay you $60/hr., you
have to be part of the union and know what goes on around here. We
can’t go around supervising, babysitting you. This was in the year
2000. The end of 2001 and 2001, they say we’re gonna pay 60 bucks
an hour, I expected it. (Lloyd Interview 4-28-05)
Lloyd had thought the program was going to help him get a good-
paying union job but instead they ended up trying to help him get volunteer
work. This was not something in which Lloyd, whose goal was wealth,
showed much interest. As he described their efforts to get him volunteer
work, he laughed at the idea of it. “The other program they just wanted to
get me out working and when I would, even if it was only work or volunteer
work [laughs] (Lloyd Interview 4-28-05).”
“They’ve been helpful with uh, getting to know my limitations
physically and mentally”
Lloyd seemed to appreciate ETE’s services in ways, but didn’t always
have the most positive view of them. His description of how ETE was
helpful even seemed a bit negative, focusing on his limitations. Some of
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Lloyd’s negativity may have been because he felt Mark often gave him
feedback about his goals/hopes being unrealistic.
S: And what do you think about ETE?
L: It’s a good program and helps people. Mark says I will benefit a
lot from ETE becoming more realistic. He says that, uh, there’re not
many offers out there anymore that pay $60/hr. like they used to, like
twenty years ago when things were good.
S: What do you think about that?
L: I think, uh, people wouldn’t have as much money to pay you $60,
maybe $10/hr or 15 back then, if you’re lucky. Because there’s a lot
of wetback competition out there. That’s what my mom and dad told
me, back then.
S: Are there specific ways that ETE’s been helpful to you?
L: Uh, yes…They’ve been, uh, they’ve been helpful with uh, getting
to know my limitations physically and mentally and my experience
and everything, down to a pinpoint and the other program didn’t do
such a good job, a long time ago. (Lloyd Interview 4-28-05)
“Being a CEO and having a big Corporation”
When I sat in on job coaching appointments with Mark and Lloyd,
they both seemed frustrated with each other at times. Mark focused on the
fact that Lloyd was not realistic. Lloyd also seemed frustrated at times that
Mark wasn’t helping him become a CEO and/or become wealthy.
S: What does it mean to you when you go to ETE?
L: Um, means I’m trying to be more responsible, learn how to take
charge, so, that’s what my mom says, if you’re gonna have all that
property inherited from my uncle, gotta be responsible. Learn how to
take care of it, make sure people pays the rent in time and everything.
S: How would you describe what you do at ETE?
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L: I don’t know.
S: It’s like… tell me about what, what it’s like there when you go to
ETE, what you do with Mark, and…
L: Mark tries to get me a job and Mark says that, to make $300 an
hour, 500 bucks an hour, and, and $700 an hour is not realistic unless
I know my skills and really know my shit. That’s what Mark says.
S: Mm. Do you and Mark have a goal of when you think…
L: Uh, I have a goal, when to be a CEO, being uh, invent a company
like Larry Miller’s Sit N Sleep.
S: I mean, for you painting, do you have a goal?
L: Being a CEO and having a big corporation, a painting company.
(Lloyd Interview 5-4-05)
“Nothing at all happens”
Because Mark was sometimes frustrated with Lloyd’s hopes and goals
and because he sometimes had difficulty verifying employment history,
Lloyd hadn’t yet gotten a job. Lloyd had his own frustration about this which
came out in one interview.
S: Um, does working with Mark at ETE, does that influence what you
hope for, what you think is possible?
L: Uh, no, he thinks it’s not possible and I’ll be probably end up
flipping burgers the rest of my life, Mark says. He says I’m hopeless.
That’s why I like to quit Mark cuz, people like Mark are a dime a
dozen.
S: Who says that?
L: Uh, my dad or mom. And them um, my dad says why isn’t Mark
helping to get you a job? And then he says… I agree with my dad,
he’s terrible, nothing at all happens.
S: So—
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L: I tell you what, I’d be better off with Brother Dan, at church,
Trinity Church.
S: Do you think that Mark will be able to help you get some work
soon, or—
L: Uh, no. He says I have a problem with not knowing what to do and
how to run a corporation, that I’m gonna waste in my career with,
with me being out of the program if I get a big windfall from my
uncle. (Lloyd Interview 5-4-05)
“John said I had a problem with reality”
Before Lloyd started working with Mark, he had another job coach at
ETE – John. John seemed to have some of the same issues with Lloyd’s
goals/hopes being unrealistic.
S: Have you, now have you, did you meet with other people there
besides Mark?
L: I was meeting with someone before but he took off, and he’s, he’s
on his own.
S: And what was his name?
L: Uh, John….
S: Um, how was it with John?
L: Uh, John said I had a problem with reality hanging around the
church. Trinity Church with uh, is a health, wealth and prosperity, get
rich church, and uh, name it claim it kind of church, and uh, leave it
you’re healed, you’re healed if you’re being a beam to God and if
you’re not a beam you’ll be left out and lost…
(Lloyd Interview 5-4-05)
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Despite some negative feedback Lloyd had received about his
hopes/goals from the job coaches at ETE, he continued to attend ETE and
work with the job coaches.
ETE Closes
“They’re ending my case because Mark and I are both doing
something illegal”
After five years of working with ETE, and before getting a job, Lloyd
received notification that ETE would be closing. Unlike Demetrius and
Frank, Lloyd seemed to receive this news rather personally and felt that
somehow he was to blame for ETE’s closing.
S: So uh, you said you got a call from Mark or something, that the,
they were ending your case there?
L: Uh, my parents talked to them, and they said they’re, they’re
ending my case because Mark and I are both doing something illegal
and uh, even though it wasn’t legal, Mark lost his job and I got
terminated the case, because, they started to ask things, I made all that
money and not report it to Social Security and SSI and that’s why I’m
having problems.
S: I think actually though, it may be, you may wanna check with
Mark, but I think the reason that they’re closing all the cases out is
because they’re closing the agency. Cuz they didn’t get enough
funding to stay open.
L: I thought it was uh, dad says part of the reason, but the main reason
is this part, it’s me and Mark’s fault for uh, going out there, making a
quick buck and not breaking the law, and now where you have to pay
the piper if you’re found guilty. Dad says they could still take me to
court for, I could lose my Social Security for a whole year, year and a
half, before I get back on again….
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S: Ok. Um, you might wanna check that out with Mark because I
don’t think that’s the case, I think it’s just um, the agency was trying
to get funding, you know because they haven’t had any increased
funding in uh, like, nine years or something and, and they couldn’t get
the funding that they needed. So, I think they’re closing the agency in
another week or so. So I don’t, I don’t think you, you have to feel bad
about anything or anything like that.
L: My dad says I have many faults, not just trying to evade taxes and,
and cheat the IRS but, Mark was the one that, that got me to it. I
didn’t know it was uh, evade, get arrested for tax evasion and go to
court and pay all that money back that I shoulda got from Social
Security, cuz I was working. And possibly may pay penalties interest
on top of that in court fines.
S: Uh huh.
L: So that could be a lot of money.
S: Yeah I don’t know anything about that but I’m just saying like the
reason that they’re closing, I don’t think that’s your fault or anything,
I think it’s just the, the funding problems with the agency getting
money. (Lloyd Interview 7-7-05)
“He knows how to talk to people, get the jobs better than I do”
Even after receiving news that ETE would be closing, Lloyd
continued to meet with Mark for job coaching. The struggle also continued
over how realistic Lloyd’s hopes were.
S: So you have any um, painting jobs coming up?
L: Yes, with Mark. He’s helping me now, because he knows how to
talk to people, get the jobs better than I do and he, Mark says, you
wanna $30 an hour job, come see me, I’ll help you. That’s what Mark
told me uh, ten times now so far.
S: Are you gonna see him again before they kinda close up or…
L: Uh yes.
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S: Do you have an appointment scheduled or you’re just gonna make
one?
L: I already made one. He says he’ll let me know.
(Lloyd Interview 7-7-05)
“They didn’t call back”
Like Demetrius and Frank, after ETE closed, Lloyd waited quite a bit
of time during which he didn’t receive any vocational services. During one
interview after ETE closed, Lloyd had attempted to call the Department of
Rehabilitation and leave a message. When I met with him again, he still
hadn’t heard anything from them.
L: They didn’t call back.
S: Well uh, I think you’re gonna have to just call them. I, I don’t
know why they don’t call you back, but, I can’t, you know, really call
them for you just because I’m a student and I’m not really working as
a, uh, job counselor or anything. But they’re supposed to be, think
ETE’s supposed to have transferred your case to them, so they should
be able to help you.
L: Uh. I wish it was a place closer, it’s all the way in Carson. Black
Hill, said go all the way out there.
S: There’s nothing around here?
L: No, nothing around here.
S: I guess you could ask if, if Laura ever calls you can ask her.
L: Ok, alright. (Lloyd Interview 7-18-05)
“Yes they called my parents”
The design of this research allowed me to have periodic contact with
the participants after we finished the more intensive interviewing. Because
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of this extended contact, I was able to meet with Lloyd again after a few
months. When I met with him again, I found out that ETE had begun trying
to start a program again on a very limited basis. As I understood from both
Lloyd and Frank, ETE was offering direct employment to former participants
to fulfill a job contract they had gotten.
S: Have you heard anything from, uh, ETE?
L: Uhhhhhhhhhh, yes they called my parents and my parents said that
uh, to me that ETE has a job at minimum wage and uh, they don’t
want me working for minimum wage, $12 an hour. It’s not enough
money, because I’ll lose my Social Security and my Medi-Cal and
everything, and I won’t, I’ll be stuck with a lot of bills. They said if I
want to work for ETE it’d have to be a job with, my dad says
minimum, a minimum of 24 an hour or nothin’ less than 25 an hour,
because of losing my benefits – Social Security.
S: What was the job, do you know?
L: Longshoreman.
S: No, the, the one that ETE was offering.
L: Uh, it was a record job. I don’t know, working somewhere in the
LA area, and it was only 11 something, 11.30 an hour. It’s not, not
good enough. I gotta have at least, uh 45, 43 an hour and up, cause of
losing my Social Security.
S: Was that recently?
L: Yes.
S: When was it, do you know?
L: About a month or two ago.
S: So you haven’t been back there?
L: No, because they don’t have anything that pays, by, I’d like to get
$60 an hour, or more. (Lloyd Interview 5-2-06)
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“They said they’re gonna get me an apartment”
When I met with Lloyd again after I had spent a few months writing
up this research information, I found out that he had finally gotten connected
to another program. It seemed as though the program might have been more
mental health than just vocational.
S: Oh….do you um, are you working with some other…?
L: I’m working for, uh, I was working for that short guy at ETE but I
don’t know what his name was, Ronald, I mean uh Franklin,
something like that, that short guy, nice guy. I think it’s Franklin, I
don’t remember what the name is.
S: Are you talking about Mark?
L: Yes. Mark was uh, saying that I never had a job in my life before
and I was trying to get Mark to offer to help me get a job paying, uh,
paying $62 an hour with Mrs. Richards. She’s in charge of the
longshore issue, in Wilmington, Long Beach, and San Pedro. And
she owns that property there and she’s a rich woman there I think,
‘cause her family was rich in that, that stuff. And, uh, she’d be the
one to hire me at, at least 62 to $150 an hour, Mrs. Richards, over at
the docks.
S: But, I mean, are you working with another agency now, like…?
L: Uh, no, the agency the agency has…
S: Like the Department of Rehab or anything?
L: Department of Rehab says that, uh, they don’t have anything that
pays at least $45 an hour. I’m worried about losing all my benefits
and I won’t have any way to pay all those medical bills. I’ve got
medical bills and everything, at least 10 to $15,000 a year, or more.
Last year it was $24,000 of expenses. I have enormous size medical
bill. Cause I’m diabetic, that’s why I have all kinds of problems. It’s
in our family. I’m type one. I was born with it that way.
S: So you don’t, do you meet with them at all at that Harbor Regional
or…?
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L: Uh…yes, Harbor Regional, they meet. They say they’re gonna get
me an apartment and I don’t have to worry about working for Mrs.
Richards, making a lot of money from her. Because, they’ll get me an
apartment for only, rent’s only $10 a week. They’re trying to get me
uh, his name is Don. I don’t know his last name, from FOCUS.
(Lloyd Interview 5-2-06)
The last time I spoke with Lloyd at the end of 2006, he was still
searching for jobs and working with vocational rehabilitation. He was also
still living at the same group home. He asked me if we could exchange
Christmas presents. I reminded him once again of my role as a researcher
and suggested we meet for coffee sometime to catch up on how he was doing.
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Viewing Schizophrenia through Occupations
in the Lives of Three “Regular Guys”
Freud was once asked what he thought a normal person should be able to do
well. The questioner probably expected a complicated answer. But Freud, in
the curt way of his old days, is reported to have said: “Lieben und arbeiten”
(to love and to work). (Erickson, 1950/1963, p. 264)
Introduction
One of the questions with which I began this study was "what is the
experience of living with schizophrenia as viewed through the lens of
occupation?" I felt that much of the existing literature about living with
schizophrenia was focused on symptoms and pathology. Even my own
experiences of working in an acute care psychiatric hospital had created an
idea of living with schizophrenia in which coping with schizophrenia would
be the paramount concern. In fact, as could be seen in the occupational
stories of the three participants in this study, this was not the case. They
didn’t see schizophrenia as the most prominent aspect of their lives. They
had meaningful occupations with which they preferred to be identified
distancing themselves from being labeled “schizophrenic.” The motivation
for distancing themselves from the diagnosis of schizophrenia may have been
due to anticipated stigmatizing or may have been from actual discrimination
experienced because of this diagnosis.
Each of the three men who participated in this study engaged in a
variety of occupations. I was able to observe and experience some of these
occupations through participant-observation. These occupations were often
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important connections to their hopes and desires. In addition, these
occupations provided a better understanding of the richness of their daily
lives than would have been available if I had only observed them at ETE, or
had only conducted interviews. These occupations also provided a window
for understanding the contexts in which each of these men were living -
socio-cultural, political, historical, spiritual, etc.
A review of the literature provided a foundation for understanding the
relationship between occupations and living with schizophrenia. There were
three bodies of knowledge from which this review of the literature was drawn
– 1) Occupational Science and Occupational Therapy, 2) mental health, and
3) the perspective of mental health consumers. Occupational science, being a
fairly new discipline hasn’t yet developed much literature about the
intersection of occupation and schizophrenia. Much of the mental health
literature has traditionally focused more on symptoms, coping, and
pathology. The focus on the experience of living with schizophrenia from the
consumer’s perspective brings a different understanding to the issues of
living with schizophrenia. After reviewing the literature from the perspective
of these three bodies of knowledge, I will discuss ideas about schizophrenia
as viewed through occupations, from the experiences of the three men who
participated in this study.
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Occupation as Lens
I will begin this chapter by defining occupation in the broader and
more encompassing sense upon which this study is grounded. Occupations
can be all types of active involvement or “doing” (Yerxa et al., 1990; Fisher,
1998; Gray, 1998). Yet, what kinds of “doing” are included in the idea of
occupation? Occupation is said to be about “work, play, rest, self-care, and
care for others” (Wilcock & Townsend, 2000, p. 84). Since these types of
“doing” are so broad, it might be helpful to describe more specific ways of
thinking about them. An important idea about occupation is that these
activities can be considered activities of everyday life (Yerxa et al., 1990)
and as such can encompass the array of human endeavors – bathing, cooking,
eating, driving, reading, writing, drawing, working, walking, skydiving.
They are the “activities people engage in throughout their daily lives to fulfill
their time and give life meaning…. Occupations always have some degree of
personal meaning having contextual, temporal, psychological, social,
symbolic, cultural, ethnic, and/or spiritual dimensions” (Hinojosa & Kramer,
1997, p. 865).
Though occupations may seem to be synonymous with activities,
unlike activities, occupations have been viewed in occupational science and
occupational therapy literature as those activities that are meaningful to a
person. Meaning was a central theme in the Well Elderly Study (Jackson,
Carlson, Mandel, Zemke, & Clark, 1998). In this study, older adults who
participated in meaningful occupations under the guidance of an occupational
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therapist made significant gains on wellness measures, as opposed to another
group of older adults participating in general activities. Again, meaning was
important in Clark’s Eleanor Clark Slagle Lecture (1993) about the use of
occupation in helping to rebuild a meaningful life for a professor that
suffered a debilitating aneurysm. In addition to personal meaning,
occupation has been discussed as sometimes having symbolic meaning
(Clark et al, 1991). An example of activity having symbolic meaning is when
people make origami paper cranes in a symbolic gesture towards bringing
about peace. In the tradition of Japanese culture, if someone folds a thousand
paper cranes his/her wish will be granted (Dream Come Through
Productions, 1997-2002).
Occupation has also been discussed as part of a temporal framework
of orchestrating lives (Clark et al., 1991; Gray, 1998). I experienced this
temporal aspect of occupations in the disconnected feeling I had when we
moved to Los Angeles before we were able to re-establish engagement in old
occupations or develop new ones. Occupations not only help organize time
but are also influenced by time. In Mary Catherine Bateson’s (1990) writings
about the lives of five very successful women, she discusses how women’s
occupations are not neatly parceled out and completed one by one, but are
enfolded throughout daily activities. Because women’s lives are so involved
with family caregiving responsibilities, she argues that women’s occupations,
more than men’s, are often woven throughout the daily responsibilities of
caring for a family.
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Occupations are also embedded in a socio-cultural context (Yerxa et
al., 1990; Hocking, 2000) as well as a historical context (Jackson et al., 1998;
Clark et al., 1991). These occupations are shaped by socio-cultural contexts
and also continue to shape these same contexts. Who can imagine a large
family dinner without imagining it being defined by the food that is a part of
his/her own socio-cultural background and experience? Such contexts
quickly became apparent when my husband and I were planning a pot-luck
dinner with our international neighbors in family housing at USC. Our
neighbors from Iran needed hallowed meats because of their religious beliefs
as Muslims; we were vegetarian because of philosophical and health beliefs;
and our neighbors from Pakistan didn’t eat beef because of their cultural
background. This event evolved into an outdoor cookout in which all
brought their own meat/meat-substitute to grill, and a vegetable dish to share.
Occupations have a historical and political context. Eating can be a
venue in which we observe the historical aspects of occupations. Many
Americans continue to celebrate Thanksgiving by eating turkey and dressing,
as was said to be the menu at the first Thanksgiving dinner shared by Native
Americans and Pilgrims. Jackson (1995) discussed the political aspects of
engagement in occupations in her doctoral dissertation about the lives of
lesbian women in the arena of healthcare. Some of their occupations were
overtly political as when they worked to pass anti-discrimination legislation.
Other occupations, though not overtly political, could be seen as having a
political context, such as working to create an environment in which one
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could live openly as a lesbian woman. For example, one woman brought her
partner to a Christmas party though she saw it as a “hetero event.” Another
couple invited heterosexual friends to a restaurant frequented by many people
who are gay, in an attempt to introduce them to gay culture.
Other dimensions of occupations include the social and
developmental aspects. Occupations are not always solitary activities, but
can be activities that require the involvement of other people. These shared
occupations are social by definition, as in the context of mothers’ activities
with their infants (Dunlea, 1996). It is difficult to imagine that many other
occupations aren’t also shared, such as playing baseball, engaging in politics,
or writing articles for a newspaper or magazine. Engagement in occupations
is also developmentally influenced (Clark et al., 1991), as when babies
engage in a game of dropping objects repeatedly as they try to understand the
properties of the physical world around them.
And finally and perhaps most importantly, occupation has been
described as having the ability to influence health (Yerxa et al., 1990; Clark
et al., 1991; Wilcock, 1993; Cox, 1995). An example of occupation’s ability
to negatively influence health is when someone becomes depressed because
an acquired disability leaves him/her unable to engage in his/her favorite
occupation – eg. running or drawing. An example of occupation as a positive
influence on health is when I am stressed and find it calming to be outside in
nature enjoying a favorite occupation such as gardening.
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From all these ideas about occupation, I will be using the following
definition for occupation within this paper. Occupations are activities that
are performed in the midst of our everyday lives. They are developmentally
influenced and personally meaningful, and can also be symbolically
meaningful. Occupations are embedded in political and historical contexts,
and both shape the socio-cultural context and are shaped by it. Likewise,
occupations both organize a temporal framework and are organized by it.
Occupations are a powerful force, having the ability to influence health.
It is through this lens of occupations that we will be able to view the
richness and difficulties of living with schizophrenia. These occupations
allow us to see the meaning embedded in everyday activities or occupations.
The levels of meaning such as socio-cultural, political, and historical may
also be viewed through occupations. These occupations give a framework
for organizing time and routine. By viewing the attempt to use occupations
to create meaningful lives while living with schizophrenia, there may be yet
other dimensions of occupations that will be revealed. In the next section, I
will look more closely at the diagnosis of schizophrenia. I will describe the
historical, political, socio-cultural, and other aspects of living with
schizophrenia. In this way, I hope to provide a context for what it is like to
live with this disorder before looking at the experience of the three
participants in this study.
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The Diagnosis of Schizophrenia
When I began this study, I had knowledge of schizophrenia from my
studies as an occupational therapist, and from working with clients diagnosed
with schizophrenia. As I took a closer look at schizophrenia for this study, I
realized that though the psychotic symptoms associated with schizophrenia
must make it a difficult disorder with which to live, the added challenge of
living with a diagnosis like schizophrenia comes from the difficulty society
has had in understanding schizophrenia. Because of this difficulty in
understanding the psychotic symptoms associated with schizophrenia, there
has been a lot of misunderstanding and stigma in relationship to the
diagnosis. These misunderstandings have been seen historically, as well as
contemporarily.
Though the disorder known as schizophrenia has been discussed in
Western medicine for over 150 years, it remains a complicated and
sometimes controversial diagnosis today. Some of the controversy related to
schizophrenia has involved the definition, and understanding of the disorder,
and its causes. Schizophrenia, as a diagnosis has existed since Emil Kraeplin
first described it in the late 1800’s as Dementia Praecox (Johnstone,
Humphreys, Lang, Laurie, & Sandler, 1999). Kraeplin defined this disorder
based on his study of the symptoms and outcomes of a group of severely
mentally ill patients. Though Kraeplin ultimately failed, he had hoped to find
the neurobiological mechanism and disease causing this disorder (Flaum,
1995). When the name “schizophrenia” was given to this disorder in 1911 by
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Eugene Bleuler, he not only changed the name but also the concept to include
a more psychological understanding of a disconnection or schism between
different functions of the brain (Johnstone et al., 1999). From the 1920’s
through the late 1960’s the psychoanalytic view of schizophrenia
predominated, which blamed “schizophrenogenic” mothers as the cause of
schizophrenia (Noll, 2000). This blaming carried through the family
interaction theories from the 1950’s through the 1970’s and focused on
unhealthy communication patterns within the family (Noll, 2000). The
understanding of schizophrenia in the later part of the Twentieth Century
turned once again to a more biological model, but problems in defining
schizophrenia have persisted despite the ongoing efforts of psychiatry. Two
persistent problems in defining schizophrenia remain: 1) The same
schizophrenic symptoms may arise from varying causes and we do not know
what these causes are, and 2) as yet no actual biological markers have been
identified that would definitively indicate the presence of schizophrenia
(Vinogradov, 1995).
Contemporarily, schizophrenia is defined as a severe mental disorder
which impairs a persons thoughts, emotions, and understanding of reality. It
includes such symptoms as hallucinations, delusions, disorganized thinking,
inappropriate behavior, blunted affect, loss of motivation, poverty of thought,
and social withdrawal (Diagnostic and Statistical Manual of Mental Disorders
[DSM-IV], 1994). These symptoms fall into three broad categories – positive
symptoms, negative symptoms, and cognitive symptoms (National Institute
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of Mental Health [NIMH], 2007). Positive symptoms are unusual thoughts or
perceptions manifested by the person such as hallucinations and delusions.
Negative symptoms represent a loss of certain aspects of usual behavior such
as blunted affect, or loss of motivation. Cognitive symptoms are things like
loss of memory or difficulty concentrating. Functioning in activities of daily
living such as work and self-care must be markedly below the level achieved
prior to onset of the symptoms, and in addition, symptoms must persist for at
least 6 months (DSM-IV, 1994). Though there are differing types of
schizophrenia such as a paranoid and a disorganized type (DSM-IV, 1994),
my use of the term “schizophrenia” in this study focuses only on the general
criteria for the disorder of schizophrenia.
Despite the more unusual symptoms of schizophrenia, it is not an
uncommon disorder. About 1 in 100 people will develop schizophrenia by
age 55 (Gottesman, 1991). The first symptoms of schizophrenia are usually
manifest in a person’s teens or early twenties (NIMH, 2001). By occurring
during this point in development, schizophrenia may disrupt the process of
achieving independence, a career, and adult relationships (Stein &
Wemmerus, 2001). A person diagnosed with schizophrenia has to cope not
only with the diagnosis, but also with the subsequent disruption of his/her
development as an adult. This disrupted development before he/she has
achieved any of the hallmarks of adulthood can thus alter the lifecourse that
the person and his/her family had anticipated prior to this diagnosis. For a
number of reasons, including the disrupted lifecourse caused by this disorder,
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and the continuous or recurring symptoms, schizophrenia remains the most
chronic and disabling of the severe mental illnesses (NIMH, 2001). It has
been estimated that 10% - 15% of people with schizophrenia commit suicide,
well above the general population average (Siris, 2001).
Although even the diagnosis of schizophrenia has been seen to have a
universally negative prognosis, in reality, the course can be variable (Warner,
2000). About 20 to 25 percent of people with schizophrenia recover
completely; another 20 percent have some symptoms, but lead full and
productive lives (Warner, 1994). For most of the remainder, the experience
of schizophrenia may be periodic or continuous severe illness (Warner,
2000).
Treatment for Schizophrenia
Perhaps because the understanding of the diagnosis of schizophrenia
has been so difficult and varied, the treatments for schizophrenia have also
been quite varied, and have even bordered on torturous. In Eighteenth-
Century Europe, before schizophrenia was even classified as such, people
with the symptoms of the current diagnosis of schizophrenia such as
delusions and hallucinations, were “treated” or housed in insane asylums.
Lack of understanding about people suffering with such symptoms led to a
shocking array of extreme “therapies” designed to invoke terror, and to bring
about subjugation of the patient’s will (Whitaker, 2002). These “therapies”
ranged from beating and induced purging, to near drowning, bleeding, and
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blistering (Whitaker, 2002). These same “therapies” were often adopted by
Americans in the treatment of mental illness.
Though the advent of the moral treatment movement in the late
Eighteenth and early Nineteenth Century saw an improvement in conditions
and treatment for the mentally ill, this was not the end of experimental
therapies. These experimental treatments continued well into the Twentieth
Century. After the advent of the moral treatment movement, the goal was no
longer terror and subjugation; but with some of the treatments being used, it
is hard to imagine such reactions were uncommon. Some of the Twentieth
Century treatments included deliberately introducing malaria to the patients
as a fever therapy, and inducing a coma through insulin shock therapy
(Green, 2001). By understanding the drastic measures undertaken in an
attempt to try to cure people with mental illness, it is possible to see the fear
and judgment that a disorder such as schizophrenia generated historically.
Political and Socio-Cultural Context of Understanding Schizophrenia
Though the course of schizophrenia can be quite debilitating, almost
as difficult and detrimental to those struggling with this disorder are the
associated and social policies that affect their day-to-day lives. People who
are diagnosed with schizophrenia continue to suffer from stigma and lack of
public understanding (NIMH, 2001). The prognosis of schizophrenia in
industrialized countries is exacerbated by the accompanying stigma that
comes from the public’s poor tolerance of bizarre behavior (Kruger, 2000).
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Similarly, the social construction of schizophrenia itself results from
society’s same inability to tolerate the bizarre behaviors and thoughts of those
so classified (Sarbin, 1991). The average person, even if he/she hasn’t been
clinically depressed, has had some experience with feeling sad or blue, but
few people can relate to the hallucinations and delusions that can accompany
schizophrenia. People with schizophrenia are often seen as more mysterious,
alien, and violent (Warner, 2000). These societal views of people with
schizophrenia impact those with the disorder. One study found that people
with mental illness who perceived the most stigma associated with mental
illness, had the lowest self-esteem and sense of mastery (Warner, Taylor, &
Powers, 1989). Even necessary hospitalizations resulting from schizophrenia
are a source of stigma. A loss of dignity and self-esteem were reported by
people with mental illness when they were hospitalized (Letendre, 1997).
An article published in USA Today (“Stigma creates”,1998) described
a study by the National Alliance for the Mentally Ill, which focused on
stigma and discrimination related to employment for people with
schizophrenia. One participant described his/her experience: “When I was
first diagnosed, I made the mistake of telling my supervisor at the time what
was going on. She decided I couldn’t handle a job I’d been doing for 10
years and demoted me.” (“Stigma creates”, 1998, p.16)
People with severe mental illness such as schizophrenia experience
the negative impact of stigma, and are also disadvantaged due to lack of
social power. The problem for those with schizophrenia is that they have
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limited access to social power and influence due to the limited social roles
that they occupy. They are often unemployed, hospitalized, jailed, and
impoverished (Warner, 2000). The likelihood of someone with schizophrenia
marrying and having children is about 1/3 to 1/2 of that of someone without
the diagnosis (Gottsman, 1991). People with schizophrenia are more than
twice as likely as the general population to be jailed, and to remain in jail
longer than those who do not have the disorder (Warner, 1994). Despite
perceptions that people with schizophrenia may be dangerous to others, a
study by Brekke, Prindle, Bae, and Long (2001), on risk associated with
schizophrenia, found that adults with schizophrenia were 14 times more
likely to be victims of violent crime than to be arrested for committing a
violent crime. Those diagnosed with schizophrenia are much less likely to be
employed and, if employed, usually have lower wage and lower status jobs
(Warner, 2000). Even having one’s subjective experience objectified and
seen as an illness, can be dehumanizing and disempowering (Warner, 2000).
Social policies enacted in this country on behalf of those with mental
illness have also had a profound, and sometimes unintended, effect on the
lives of people with schizophrenia. In the 1960’s there was an effort to
deinstitutionalize people with severe mental illnesses like schizophrenia, in
favor of less restrictive community-based treatments (Accordino, Porter,&
Morse, 2001). Though such an effort was an attempt at more humane social
policy, without sufficient funding and provision of community access to
treatment, the move from institutionalization led to criminalization and
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incarceration (Accordino, et al, 2001). Now, many persons with
schizophrenia find themselves in a penal system that is ill-equipped to deal
with their problems. Another unintended consequence of
deinstitutionalization policies has been an increase in homelessness among
people with schizophrenia. This is due to inadequate access to services and
support (Lehman, Kernan, DeForge, and Dixon, 1995). Even the disability
system, which provides income support to people who are disabled due to
mental illness, has proved to be a barrier to employment. The disability
system has built-in disincentives for working such as reduced or discontinued
benefits for people once they go to work (Warner, 2001).
From the historic controversies about the etiology of schizophrenia, to
the contemporary struggles to overcome the stigma of the diagnosis,
schizophrenia has been, and continues to be a difficult disorder. The historic
controversies about the diagnosis of schizophrenia, were also the genesis of
many terrible treatments. Since we didn’t know what caused it, or exactly
what it was, an array of torturous treatments were fair game. In addition,
because schizophrenia has been so poorly understood by the public, people
with schizophrenia have had to cope with much stigmatization. Thus, despite
the high cost of schizophrenia, in both loss of human potential and in the
tremendous cost of treatment, the available services have been inadequate
and absent. With this understanding of the context of schizophrenia, in the
next section I will begin the overview of some of the relevant literature from
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Occupational Science, Occupational Therapy, mental health, and first person
accounts.
Schizophrenia in Occupational Science and Occupational Therapy
Literature
Betty Yerxa, a founder of Occupational Science, proposed that the young
discipline of occupational science address the question “What sort of life
experience will the person with cerebral palsy or a head injury or chronic
schizophrenia have in the twenty-first century?”(Yerxa et al, 1990, p.3). It
seems that Yerxa understood that being able to answer this question was
important because it addressed occupational science’s ability to contribute to
understanding the qualitative experience of living with difficult diseases and
disabilities such as schizophrenia. Yet, in the past 15 years, there has been
little research on this topic within the discipline of occupational science.
Minato and Zemke (2004) conducted a quantitative study of adults
living with schizophrenia in the community in Japan. They described how
people with schizophrenia spent more time sleeping and resting than did the
general population. The adults with schizophrenia, and those without
schizophrenia, spent less time sleeping if they were employed. This study
does begin to answer Yerxa’s question about the life experience of living
with schizophrenia by helping us understand the relationship between time
use and occupations for people with schizophrenia, but it is only a beginning.
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Krupa, and occupational therapist, has conducted research (2004)
about how the process of recovery is related to working for people with
schizophrenia. One of her qualitative studies involved in-depth interviews
with three adults who had schizophrenia, two of whom had worked for
several years and one who had not. She described different phases of the
participants recovery related to work – such as the first phase - assuming
control - as a time when the participants in the study were overwhelmed by
symptoms and trying to cope in order to be able to work. The second phases
included developing a work identity that was separate from the illness
identity but included features of the disorder. This study was helpful in
understanding the challenges of working while living with the disorder of
schizophrenia but didn’t address the role of other occupations. From an
occupational science perspective we also learn about how working is related
to recovery. Though Krupa (2004) and Minato and Zemke (2004) advanced
the understanding of living with schizophrenia through the lens of
occupation, these two studies provide a specific focus on time use and work,
and not a broader view of occupations in the lives of adults with
schizophrenia.
There are studies about schizophrenia in related occupational therapy
literature; but since it is a more applied clinical field, much of the literature is
framed in terms of clinical and therapeutic issues. There is little literature
that examines the experience of living with schizophrenia through the lens of
occupation. We get some understanding of this experience in a letter by
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Murray (2002) in the American Journal of Occupational Therapy. The letter
described her experience of the difficulty in becoming an occupational
therapist (OT) while having schizophrenia. Murray described her struggles
with her sense of self-esteem as she tried to go to school and cope with the
diagnosis of schizophrenia. Despite finishing her degree and becoming
licensed as an OT, she said that she hadn’t ever practiced as an OT. She
found that many of her own fears and a lack of self-esteem prevented her
from practicing. Her OT degree and professional identity seemed important
to her as she described how she had incorporated the values of occupational
therapy into the way she organized and lived her life.
There are several studies within the occupational therapy literature
that focus on a specific issue of schizophrenia related to occupation, such as
time use, or the flow theory of Csikszentmihalyi (1990), but not a broader
view of schizophrenia and occupations. Similarly, time use studies in the
occupational therapy literature illustrate the disrupted patterns and rhythms of
occupations in the everyday lives of adults with schizophrenia. Having
difficulty organizing time would seem to relate to difficulty pursuing
occupations important to professional and leisure goals and values. In a
related vein, Neville, Kreisberg, and Kielhoffner (1985) discussed in a
conceptual paper, the problems people with schizophrenia encounter in
organizing daily activity and occupation, and also in planning and carrying
out future occupational goals. A related study found that people with
schizophrenia spent more time sleeping and in passive leisure activities than a
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normal sample, and that they felt less control over the time spent in active
leisure activities (Weeder, 1986).
The study in the occupational therapy literature that comes closest to
using occupation as a lens by which to understand living with schizophrenia
was conducted by Suto and Frank (1994). It was a qualitative study of the
“structure of daily life in community-based sheltered-care, using a theory of
temporal dysfunction in schizophrenia” (Suto & Frank, 1994, p. 5). This
study provided a sense of the difficulty someone with schizophrenia might
have in organizing an occupational agenda related to her/his interests and
values while living in a board and care home. Although this study looked at
the daily occupations of the participants, and considered how those
occupations were related to the participants’ values, the focus was more on
the temporal aspects of daily life and routines, than issues of meaning
generated by engaging in those occupations.
Though we learn about some of the issues that might create barriers to
pursuing desired occupations while living with schizophrenia, we don’t learn
too much from the literature within occupational science or occupational
therapy about how occupations create meaning in the daily lives of adults
with schizophrenia. The OS and OT literature does help us understand that
pursuing desired occupations might be more difficult for someone with
schizophrenia due to difficulties such as organizing time, and creating a
routine. Next, I will review the literature on schizophrenia and occupation
from the mental health literature.
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Schizophrenia in Literature from the Field of Mental Health
Much of the research in mental health literature does not focus on
understanding the daily life experiences of adults with schizophrenia as
related to their occupations. There is some research in mental health
literature that sheds light on aspects of living with schizophrenia. There is
mental health literature that examines life with schizophrenia through quality
of life, or other measures of the subjective experience of living with
schizophrenia. Many variables which might impact quality of life have been
studied, such as work (Priebe, Warner, Hubschmid, & Eckle, 1998), and
socialization (Borge, Martinsen, Ruud, Watne, & Friis, 1999; Tempier,
Mercier, Leouffre, & Caron, 1997).
In the mental health literature, there are some studies that examine
factors such as subjective experience. Brekke, Long, and Kay (2002)
developed and tested a model for measuring social functioning for people
with schizophrenia. The model examined five factors related to social
functioning: number of friends, symmetry of friendships, quality of social
relations, satisfaction with social life, and social competence. These factors
were found to have validity in assessing social functioning for people with
schizophrenia. Brekke, Kohrt, and Green (2001) also did a study that found
neuropsychological functioning acts as a moderator between psychosocial
functioning and the subjective experience of self. This research seemed to
indicate that those with higher executive functioning didn’t improve in
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measures like self-esteem despite modest gains in psychosocial functioning,
perhaps because they were able to more readily recognize their deficits
compared to a variety of reference groups. Thus, from the mental health
literature we learn about the subjective experience of living with
schizophrenia and how functioning can impair self-concept.
I found two qualitative studies that highlighted a broader view of the
experience of living with schizophrenia. These two studies also described
how this experience influenced the participants’ views of themselves. The
first was a qualitative study conducted in New Zealand about the life
experiences of people with schizophrenia who were residents of a supported
living program (Humberstone, 2002). This study used grounded theory, and
discussion with participants, to arrive at a unifying theme called “A way to
survive.” The results grouped the participants’ responses into categories
related to this theme of “A way to survive” – such as identity, religion and
psychosis. This study indicated that participants found that asserting a strong
individual identity, as well as identifying with family and religion, were
important survival strategies. In contrast to all the other research participants,
only one participant with the longest history of institutional care, found that a
strong identity of “schizophrenic” was helpful to him. Though this study did
illuminate some issues with surviving schizophrenia, it didn’t contribute to
the understanding of how these quests to be more than a diagnosis, were
related to occupations.
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In the second study, Estroff (1981) carried out an ethnographic study
of clients with chronic mental illness who were involved in a community
mental health program called PACT. In this study, she attempted to
understand the experience of living in the community when one is identified
as a “crazy” person. Estroff found that the mental health treatment system,
and the larger cultural context in which it occurs in this country, almost
seemed designed to forge an identity of a “crazy” person or mental patient.
Some of the factors which contribute to this kind of negative identification of
the person living with mental illness include systems of treatment and
disability that reinforce dependency, and the pre-conceived idea that many
professionals hold of the person with schizophrenia’s inability to manage
his/her own life. These same systems of treatment and disability also isolate
the person from the rest of society, and mostly provide interactions with other
clients who share the same problems. The system also limits the interactions
of the person with a mental illness to professionals who hold a view of the
client as a “patient,” thus reinforcing negative ideas. Estroff says that the
insidious nature and long duration of chronic illnesses such as schizophrenia
seem to contribute to confusing the person with the illness/symptoms.
Though we learn quite a bit from her research about the experience of “being
crazy,” such as how the system and culture create and reinforce this labeling,
there isn’t much viewing of this experience through occupations.
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First Person Narratives of Schizophrenia and Qualitative Studies about
People with Schizophrenia
The literature by and about consumers, is populated with accounts
describing the importance of a positive and agentic identity other than that of
“schizophrenic.” From first-person accounts of people with schizophrenia,
we learn about the importance having a sense of self beyond the mental
illness. Dykstra (1997), a mental health consumer, describes how important
it was to her to have meaning, apart from her diagnosis, through her writing.
Similarly Greenblat (2000, p. 245), talks about how important it was to her to
be treated “as a human and not an illness.” Additionally, she discusses the
importance of realizing her own agentic role in her wellness process. In her
discussion of how important it is for her to make friends, Parker (2001) talks
about how difficult that interaction is with schizophrenia. She says she
wishes for a “normal” life that would include a partner, family and career.
Finally, in a qualitative study with women who have mental illness, they
discuss some of the negative labels they have received because of their
schizophrenia:
“ I know, you feel you’re a misfit in the eyes of other people.”
“I don’t feel it. I know it.”
“A second-class citizen.”
“An oddball.”
“A weirdo.”
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“But it’s not true. Everybody has feeling, and the feelings are
similar.” (Chernomas, Clarke, & Chisholm, 2000, pp.1518-1519)
From the review of the relevant OT, OS, and mental health literature
about schizophrenia and occupations, several ideas emerge that are relevant
to this study. First and perhaps most importantly, people with schizophrenia
seem to strongly desire to be perceived as “normal.” Most of the consumers
tried to distance themselves from being too closely linked to their diagnosis.
They desired to be seen as people with work and relationships, even as
societal systems seem to support and reinforce associations with diagnoses
and pathology. The literature also indicated that people with schizophrenia
may have some difficulty organizing their time, though similarly to people
without schizophrenia, they had more productive use of their time if they
were working. Living in a board and care home also seemed to negatively
impact people’s ability to organize their time.
In the next section of this chapter, I will look at the issues of living
with schizophrenia that come from the participants in my study. This look
will be seen through the lens of occupation that I as an occupational scientist
have chosen to use.
Schizophrenia through the Lens of Occupation in this Study
The three participants in this study had something to teach me about
living with schizophrenia. Echoing the narratives of adults with
schizophrenia, the three men in this study focused on their lives as “regular
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guys,” with schizophrenia being just an aspect of their lives with which they
had to live. In addition, their lives seemed to be much more defined by the
occupations in which they chose to engage, even as how they saw themselves
dictated the occupations in which they participated. In the following
sections, I will discuss how each of the three men in this study saw himself in
relationship to schizophrenia, and discuss how each man’s view of himself
was related to the occupations in which he chose to engage. I will also look
at how their engagement in occupations reflected the historical, political, and
socio-cultural context in which they were living. I will particularly look at
each man’s participation in work, religious, and leisure occupations. I will
begin with Demetrius.
Participants Want the American Dream
I grew up hearing that the American Dream was to have a good job,
own a house, have a family, a car, and pets. Demetrius, Frank, and Lloyd all
described variations on this idea as their dream. These visions of the
American Dream are sometimes considered developmental milestones – to
have a job, a spouse, a house, and children.
Demetrius
For Demetrius these priorities were ranked in an order that made
sense to him.
Well, it’s basically like, my priorities are set in which, first comes the
income, or the job with the income, and then comes the relationship,
as far as having a girlfriend and wife, then comes…um…the
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apartment or house, and then the children. So I usually keep it in that
order. (Demetrius Interview 3-14-05)
For the job part of his dream, Demetrius wanted to be involved in
healthcare, particularly in exporting medical equipment. His desire to work
in healthcare was influenced by his following St. Luke as his patron saint,
since Luke was a physician.
And I was following the, uh, evangelist named Luke. And what Luke
was, Luke was a disciple of Jesus Christ and he was a medical
doctor…. And um, the Greek culture goes back, in terms of medicine,
a couple thousand years. It was, it basically received its information
from Egypt. Egypt and Greece would work really closely, tight-knit,
and um, at one point in time in history, you wanted to become a
doctor, you would study under the Greek system, you would go to
Athens, or Constantinople, to their medical schools, to become a
medical doctor. So they have a very strong foundation in medicine.
And um, that influenced me to do the research for, ex…, medical
equipment and supplies, export medical equipment and supplies to
third-world countries. (Demetrius Interview 5-9-05)
Frank
Frank also had his vision of the dream. He wanted to be able to have
a job and do things that were important to him like writing and art. When he
heard on the radio about potential new treatments for mental illness, he got
excited about the prospect of being able to do the things he wanted to do.
“So it got me thinking, damn, I’m this close and I wanna have
artwork. I wanna have the job. I wanna have my writing. I’m this
close. What am I gonna do?” (Frank Interview 5-10-05).
In another interview he described his desires to be normal which he
equated with developmental milestones of having a wife and a job.
Why couldn’t I be normal like everyone else? You know where I’d
have a relationship by 30, where I’d have a job even earlier. I mean
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things have worked out pretty well, but, by no circumstances have
they been always normal. (Frank Interview 3-29-05)
Lloyd
Similar to Demetrius and Frank, Lloyd had goals which he hoped to
be able to achieve someday that were related to developmental milestones.
When I asked Lloyd about the goals he had for his life, he explained them as
follows: “Getting married, having children….Uh, own an house and all that
stuff (Lloyd Interview 7-11-05).” In addition to these milestones, Lloyd also
wanted to be wealthy and be the CEO of a big company: “I wanna be rich, be
prosperous and I wanna be, be a big tycoon, like, like the big giants are, like
General Motors, stuff like that” (Lloyd Interview 7-7-05).
Summary
Demetrius, Frank, and Lloyd all engaged in occupations that were
reflective of their desires to achieve developmental milestones. The fact that
all three of these men were focused on these milestones at middle-age is
consistent with the issues of living with the diagnosis of schizophrenia. Since
the onset of the symptoms of schizophrenia often occurs during late
adolescence and early adulthood, it often delays and disrupts the course of
pursuing these milestones (NIMH, 2001). All three men continued to work
towards these goals, with employment being a priority.
In the next section I will describe how each participant was diagnosed
with schizophrenia.
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Being Diagnosed with Schizophrenia
Demetrius, Frank, and Lloyd had each been diagnosed with
schizophrenia. None of them emphasized schizophrenia as a major
organizing factor in their lives. Mostly they seemed to see it as something
with which they had to cope, and often something from which they wished to
distance themselves. Sometimes, they also questioned this diagnosis or
described being diagnosed with other disorders.
Demetrius
Demetrius described how he was diagnosed with Schizophrenia while
he was in the Air Force.
I went into the Air Force and…. I got orders to North Dakota…in
about 1977 to ’78. And then I got orders to Great Britain, England,
LakenHeath Royal Air Force Base. And um, then they discovered
that I had a chemical imbalance which was schizophrenia paranoia.
But it was, it was a mild case. (Demetrius 3-14-05)
After being diagnosed with schizophrenia, Demetrius seemed to
struggle with this diagnosis, since what he knew of the disorder didn’t seem
to fit that well with his own experience of it.
Well I didn’t know what it was. I looked it up in the dictionary, and
then um, … uh, when I went to United States, came back home, I
went to a private doctor, and they were trying to describe what
schizophrenia was but, you supposedly hear voices and see things that
are not there, but I didn’t have any of those symptoms. So they said it
was mild, so I was basically trying to find out what it was all about….
I saw some programs on some people who had acute, acute
schizophrenia where, uh, they’re in prison, prisons and jails. They’re
hollering and screaming. And uh, they’re talking to invisible people,
to everybody else they’re invisible, but to them the person’s real, like
I’m talking to you. But somebody came in and they were just the
empty chair, it’s like that. But I never really experienced any of those
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things, but I kinda understood what it was, what it was like.
(Demetrius Interview 5-9-05)
Frank
Frank’s symptoms and diagnosis of schizophrenia came during his
college years. He described this experience as follows:
Well I just started hallucinating about all the things I threw away,
which became a subject of my book. And uh, and I, I went to see the
local hospital of the university, or the other campus, and uh, they put
me on medication. And I started medication from then on, and uh, I
stopped for a while I think, until I had an episode at Dominguez Hills,
um uh, I don’t know when. I don’t know when, I think there was, that
must have been in ’87 as well. (Frank Interview 4-26-05)
In Frank’s case, he didn’t question his diagnosis of schizophrenia as
much as some others around him. While he was attending ETE, some of the
staff decided that it would be helpful to clarify his diagnosis since they
thought perhaps he had obsessive-compulsive disorder. Frank described this
attempt in the following passage:
Oh yeah, there was this one time when I was at Enrichment Through
Employment, …where, uh, Cathy, the next director that came before,
uh Bob just took over the whole thing. Uh, she and the other job
developer that was, that, that was there before Franklin, that was there
before the one that is here now, and the, the two of them got together
and they brainstormed this idea about how an obsessive-compulsive
disorder specialist can help me with uh, what they perceive as my
biggest problem. And uh, but the, but the thing is that it took an
enormous amount of money, and they kept bringing my mom back,
and trying to make her do it, and she said, wouldn’t you like to find
out, wouldn’t it be a relief to find out if this is what he really needs.
And then I had a problem with waking up and this and that, this and
that, and uh, and my psychiatrist, Dr. Orion at the time, said that uh,
why don’t you just tell them we’ll think about it, because he wasn’t
convinced that I had an obsessive-compulsive disorder problem.
(Frank Interview 4-26-05)
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Frank didn’t seem as concerned with the diagnosis of schizophrenia as he
was with being an active agent of his own recovery from mental illness. In
the following passage he described how the important thing is for a person to
help him/herself.
You can’t, you can’t, you know, nobody can help you like yourself,
especially if you’re a baby for the longest time. You know, if
someone else is gonna be the way that I was, there’s nothing I could
write to them that could help them. They gotta train their own mind
just like I did mine. I don’t, I don’t think there’s a single person who
could be a specialist in solving problems for someone else that, where
it really hurts. You know, you just have to, you do without, and and
pray and whatever, but you know. All this stuff about taking
medication and seeing this person and that person, it’s a lot of wasted
breath, you know. Like a lot of gibberish but nobody says anything. If
they say it once, why do they have to say it again, and so on and so
forth. (Frank Interview 4-26-05)
Frank also took issue with the idea of diagnoses or labels in general:
“So they have all these labels to hide everything that is good that you could
provide but you’re not able to yet” (Frank Interview 3-8-05).
Lloyd
Lloyd also had issues with his diagnosis. He had received a variety of
diagnoses during the course of his life. He described being diagnosed with
“something” when he was a child, but when I asked him more about it, he
wasn’t quite sure what the diagnosis was.
S: Um, when did you get diagnosed with your mental illness?
L: When I was a little child.
S: When you were young?
L: About five years old or some…, something like that. Six years old
maybe. (Lloyd Interview 5-4-05)
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When I asked him more specifically about schizophrenia, he explained how
he was diagnosed with it as an adult.
Doctor Hector and Doctor Grainger over at Torrance, a medical
doctor, he says I’m schizophrenia because uh, I’m seeing a girl and
we’re uh, my parents told them that I’m getting married to this
woman from the Singles at Trinity Church. And, and, he says, being
both her and I are very, very retarded and way off our rocker, and
then Doctor Grainger set the family counsel with me and my mother
and dad. And her parents said me and her have lost all our marbles at
least a hundred times in our lifetime or more.
(Lloyd Interview 7-7-05)
Lloyd also described receiving other diagnoses.
Yeah it’s a case manager and, and uh, one of those people told me
that my problem is retardation, not autism. My dad thinks autism but
the form says it’s retardation being the disability, limitations on it.
And uh, the psychiatrist in the home [Lloyd’s group home] says it’s
near one of those, it’s called depression what I have.
(Lloyd Interview 7-7-05)
Lloyd didn’t seem to be that concerned about this disagreement over
his diagnosis. Like Demetrius and Frank, he was more interested in living his
life and just coping with the aspects of having a mental illness.
Summary
It is not surprising that Demetrius, Frank and Lloyd might have some issues
with this diagnosis since there has been such a longstanding debate about
what the diagnosis of schizophrenia really means (Noll, 2000; Vinogradov,
1995, Johnstone et al., 1999). Sarbin (1990) even called into question the
validity of having schizophrenia as a diagnosis based on the difficulty of
using current criteria to differentiate schizophrenia from other disorders.
What is clear from these three men’s stories, is that they were more interested
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in living their lives and trying to cope with issues that arose from having a
mental illness, and less interested in being identified by any label.
In the following section, I will discuss how the participants related to
the diagnosis of schizophrenia in their everyday lives.
Living with the Diagnosis of Schizophrenia
What concerned these three men about living with schizophrenia were
the societal perceptions and stigma associated with the diagnosis. Each of
them talked about negative reactions they experienced towards them and their
diagnosis. In the following section, I will describe how each of them
perceived such stigma and prejudice and reacted to it.
Demetrius
Demetrius in fact, seemed to prefer to keep his identification with
schizophrenia to a minimum. He preferred not to disclose his diagnosis on
job interviews, even though he realized there could be some benefits to
disclosing, such as receiving special accommodations at work (Demetrius
Interview on 5-9-05). Instead, he talked about his preference for “regular”
jobs and being treated as a “regular” person, and not being treated differently
because of his diagnosis.
D: And one time I went as a, couple times I went as a group, but um, I
just prefer going to regular jobs.
S: What do you think about that? What, what, why do you prefer it
that way?
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D: Well, because stigmas. And jobs I’ve had before, didn’t know how
people think about it.
S: How do they think about it?
D: Oh, I dunno, they just think that, well, we’re doing this guy a
favor. And he’s not really qualified, but we feel sorry for him so we’ll
give him a job. Eh, stuff like that, it just drives yah nuts.
S: Mm.
D: [Laughs] So I’d rather not even think about it.
S: Right.
D: I just like to use my brain.
S: Right.
D: You know, stuff that I learned in school. Just use that part.
S: So you want people just to take you on your qualifications, and—
D: Yeah, just like a regular, just like anybody else, you know.
(Demetrius Interview 7-22-05)
So, Demetrius avoided this stigma and many of the associated negative
ramifications as much as possible by limiting his association with the
diagnosis. Even when talking about his own diagnosis of schizophrenia, he
was careful to mention that his case was a “small case.” He recognized
though, that many people in the general public had difficulty differentiating
between people who had differing severity of mental illness.
Because there’s stigma of mental illness in United States. And they
won’t hire people who they think is gonna be crazy and go off and
shoot somebody or, it’s like, like the post office incident, the guy just
went nuts and started shooting, killing people. Um, the stigma, people
don’t understand different levels of mental illness…. And so um, even
though it’s small, small case of being nervous, nervous condition, um,
it would be misunderstood. (Demetrius Interview 5-9-05)
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Frank
Frank described his concern about schizophrenia in terms of how
people might react if they noticed some of the symptoms he was
experiencing. He particularly worried about how people at work might react
to him.
F: Yeah I, don’t like to get people worried, but, you know,
unfortunately I, I’m not adjusting well to work, and it’s showing, you
know. This time it’s showing, before I could talk about it and say
well, you know, I feel this way. Now it’s showing, now it’s actually
showing.
S: What do you mean that it’s showing?
F: You know like uh, the, my eyes are moving around, I keep bending
forward, backward—
S: Has somebody said something to you about it?
F: No, I, I notice it.
S: Oh, ok.
F: You know, like someone, someone who’s uh, delirious, who’s on
drugs and at work. You know, and you can’t have that, you can’t have
someone who’s paranoid and, you know like delusional and at work.
That’s not gonna work. (Frank Interview 7-11-05)
Similar to Demetrius desire to be seen as a “regular” guy, Frank
expressed a desire to be “normal” (Frank Interview 3-29-05). He also
seemed to have more issues with internalized stigma as in the following
passage.
Can you imagine feeling ashamed for feeling good, because of what
other people have done to you? That’s the way I feel sometimes, even
when I was eating, I was feeling ashamed of, of enjoying myself,
because of all the, the garbage that I’ve been fed. Learning disability,
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mental illness, this, that, my post-traumatic stress disorder in
American literature class. Now, I know this is an accident that I ended
up this way and I wasn’t the perfect student, but, you know, all, and
I’m willing to pay the price for it. And then I’m sorry, but that’s
where it should end. I mean, but, the thing is is that, it’s not my fault
that I’m born the way I am. (Frank Interview 7-28-05)
Lloyd
Lloyd, more than Demetrius or Frank, described experiencing
prejudice and discrimination because of his mental illness. In the following
passage, he talks about having trouble getting a job painting once the
property owner found out that he had a mental illness.
S: Did you ever have things that um, like your mental illness got in
the way of doing?
L: Yes.
S: Like what kind of things?
L: Construction. Working mechanics, stuff like that. Many things.
S: And how did it interfere?
L: Even being in painting, mental illness has affected me. Affected
me in getting the good jobs, end up taking the low-paying jobs at
minimum wage, ten dollars an hour. Cuz I have mental illness. And
when I went to an interview and asked for twenty-five an hour like
two years ago and she laughed me off the property. I told her I’d do it
for twenty-five an hour and she laughed, this is at least three, four,
five years ago.
S: Did people know you have a mental illness?
L: Yes.
S: Did you tell them or the—
L: No, uh, rehabilitation told them that. State Department of Rehab.
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S: Oh. When you went out for the interview?
L: Yes. (Lloyd Interview 4-28-05)
In another incident, Lloyd described how a person at another job site
harassed him: “I thought I had a thirty dollar an hour job, but the guy was just
playing, messing with my head” (Lloyd Interview 5-4-05). Lloyd also
discussed how people had called him names such as “moron, smelly,
disabled” (Lloyd Interview 5-4-05)
Summary
All three of these men recognized some of the negative aspects of
being viewed as mentally ill. Demetrius chose to avoid the label as much as
possible, preferring to be a “regular” guy. Frank also wanted to be seen as
“normal” and worried about people’s perceptions of him. Lloyd described
discrimination and harassment related to his mental illness. There has been
much stigma associated with schizophrenia (Warner, 2000; NIMH, 2001) and
the stigma has been discussed as even affecting the person’s prognosis
(Kruger, 2000). As reported in the earlier review of the literature, people
with schizophrenia who perceived the most stigma had the lowest self-esteem
and mastery (Warner, Taylor and Powers, 1989). To the extent that these
three men were able to distance themselves from being associated with their
diagnosis, it may have contributed to their successes.
In the following section, I will discuss Demetrius, Frank, and Lloyd’s
views on disability payments.
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Receiving Disability Payments
Demetrius, Frank, and Lloyd all received payments for having a
psychiatric disability. All three of them described receiving disability
payments in positive terms. They were more worried about losing their
disability status and not receiving any benefits such as healthcare.
Demetrius
On a practical level, Demetrius recognized that the diagnosis of
schizophrenia had been helpful to him in receiving disability related financial
support while he worked on his goal of changing his importing company to
an exporting company.
Trying, well, we had to, we were doing importing and so, a person
from the United States Department of Commerce came out from
Washington, DC to our company and told us that they want us to do
exporting. And so we had to re-tool our importing business. And um,
it took about 2 to 3 years and…meanwhile, um, we didn’t have
anything to live on, so the question was did I have any disability –
maybe that I could get some money from the state if I had a disability.
And so, I had a disability out of the Air Force – a chemical imbalance
– Schizophrenia Paranoia – so um, I got the assistance from ETE to
give me some money to help my disability and then I got SSI.
(Demetrius 3-14-05)
Frank
Frank thought that he should get more support from Social Security so
that he could do his writing and not have to worry about trying to work. He
felt that he would then be able to help others through his writing.
I, I feel, you know like, I, I, social security could, should give me
more money simply because of the fact that I’m an idealist writer.
Even though I haven’t produced. Because it’s very important, what I
may write, whatever science can’t provide. I may be the link, the
missing link that, that could help the rest. (Frank Interview 3-10-05)
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Lloyd
Lloyd had once worked at a job that didn’t provide benefits and he
lost his healthcare so he was always concerned that he might lose it again.
Yeah I lost the benefits cuz I was working in a place that had no
benefits, I was only making my small wages, ten or fifteen dollars an
hour and I was off Medical a long time, I went to the doctor and I
couldn’t get back on SSI, took almost a year, maybe more than a year,
year and a half to get back on Medical. Cuz I worked and made a few
dollars. (Lloyd Interview 5-4-05)
In another interview he talked about not wanting to work at a low-paying job
for fear of jeopardizing his disability benefits or SSI and then not having
enough money to be able to stay at the group home.
I wouldn’t, I wouldn’t be living there in the home anymore, I’d be
living with my brother and sister-in-law….Cuz I wouldn’t have any
money to pay the rent there because I get cut off, knock, knocked off
of SSI. (Lloyd Interview 7-7-05)
In our last interview, he had heard from ETE that they were offering jobs to
former clients under a new contract. Lloyd wasn’t interested though, because
again he worried that it didn’t pay enough to be worth jeopardizing his
benefits under the disability system. He said his parents were also against the
idea.
They [Lloyd’s parents] don’t want me working for minimum wage,
$12 an hour. It’s not enough money, because I’ll lose my Social
Security and my Medical and everything, and I won’t, I’ll be stuck
with a lot of bills. They said if I want to work for ETE it’d have to be
a job with, my dad says minimum, a minimum of 24 an hour or
nothin’ less than 25 an hour, because of losing my benefits – Social
Security. (Lloyd Interview 5-2-06)
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Summary
Each of these three men received disability benefits. For Demetrius,
he saw the disability benefits as a bridge to help him get his exporting
business going. Frank thought that he should receive more disability benefits
so that he could write and thus be able to help others, without worrying about
having a job. Lloyd had lost his disability benefits before and was always
worried about whether any job he took would provide enough income and
benefits to be worth the risk of losing his disability benefits again.
Lloyd’s views on disability are more aligned with the idea in the literature
that disability benefits serve as a disincentive to work because the recipients
worry about losing their payments and healthcare (Resnick, Neale, &
Rosenheck, 2003; Elinson, Houck, Pincus, 2007). Demetrius’ and Frank’s
views were different from the literature about disability being a disincentive.
Demetrius wanted to use the disability system as a bridge to the work he
wanted to do. Frank wanted to use the disability system as a support for the
work he wanted to do but that might not pay well. Thus disability payments
and benefits were important to these three men, but only Lloyd saw this as a
barrier to working – and then only to poorly paid work without benefits.
Unfortunately, according to the literature (Warner, 2000) adults with
schizophrenia usually have lower wage jobs.
In the next section, I will describe the participants’ lives as viewed
through the occupation of work.
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A View of the Participants’ Lives through the Occupation of Work
Demetrius, Frank, and Lloyd all saw finding employment as a priority
and as the first step towards other things they desired – like having a house, a
wife, and a family. For each of them, their desire to work was expressed
differently; yet all three of them wished to be either self-employed or to be
the head of his own company. Demetrius wanted to export medical
equipment. Frank wanted to use his business degree and/or to be a writer.
Lloyd wanted to be the CEO of his own company, perhaps a painting
company, but he mentioned several other ideas as well.
Demetrius
Demetrius put a lot of effort into the occupation of working towards
becoming an exporter of healthcare equipment. He once told me why
working, and looking for work, was so important in his opinion.
Well, in, depending, depending on the city, on what, like for instance
if a person becomes a jazz musician… Now, society looks upon them
and say well they’re a musician and they’re doing something with
their life. But it, if you don’t do anything, society will frown on it, and
say he’s a couch potato. If you’re not working on any type of projects
or anything, and that includes, like also um, if you’re a housewife, or,
or if you’re at-home father, well they’re raising kids, you’re doing
something, you’re, you’re preparing the future of a, of a offspring, or
you’re um, preparing meals for your family. So you have a routine
from 8 to 5 that you follow. But if you don’t do anything, then society
will frown on you. (Demetrius Interview 7-22-05)
Thus Demetrius felt both the push of societal expectations to work,
and the pull of his desire to export healthcare equipment. For Demetrius, this
desire to export medical was also an important fulfillment of a long-held
desire. I asked him in our first interview (3-14-05) what he enjoyed doing
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most and he said:
Um, basically the things I enjoy doing most would be, the research for
my export company. Um, it’s a passion that I have and it I guess it
mighta came from my background of getting a degree in business
administration, and that’s basically, what, what I’ve uh, what my
goals in life has been to uh, have my, to be the boss and have my own
export business.
Demetrius found support for becoming an exporter in the city library
where he engaged in the occupation of researching his potential exporting
business. I visited him at the city library and he seemed to have a network of
peers and librarians there who knew him. The staff who worked there and
the peers who attended the library provided some suggestions and support for
Demetrius, as he did for them. Engaging in the occupation of researching his
exporting business at the public library gave Demetrius standing within the
library community. It helped reinforce his association with being an
exporter and distance him from association with the diagnosis of
schizophrenia.
Frank
Frank desired to be a successful worker, and had hoped to do some
kind of work that would incorporate his business degree. When ETE helped
him get a job at a local grocery store, he tried to make the best of it by
thinking about how he might move up the ladder into management, and use
his degree.
I couldn’t even find anything in computer support specialist so then,
one thing led to another and I decided I’d end up in the retail, which
I’m doing now, at uh, as a courtesy clerk, at uh, a grocery store, cause
uh, after all that schoolwork that’s all I ended up doing. But the good
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thing is, that, if I keep at it, and I asked this from them, they could use
my Public Administration as management degree, so that I could,
once I move up the ladder a little bit, I could do, be manager. I asked
them and they said it would be alright. (Frank Interview 3-8-05)
Although his job at the grocery store wasn’t a fulfillment of a
longstanding desire, he did recognize the transformative aspects of working
there. Engaging in the occupation of working seemed to have a positive
impact on his organization and interactions, so that it helped shape how he
saw himself and how others saw him as well.
I don’t know. You can even ask, uh, Kim [the social worker at ETE].
Ever since I’ve worked there, I’ve changed immeasurably, you know,
from, the uh, person that speaks off tangent in group, (um) to the clear
speaker that I am now. My psychiatrist sees it. My mother sees it.
My father sees it. Uh…you know, Kim sees it. And uh, you know,
so many people see it. (Frank Interview 3-8-05)
Though he struggled with remaining optimistic, Frank was often looking for
ways to make the best of his situation. In the following passage he told me
how a book he read was helping him think more positively about his work
situation.
I don’t have to have a bad image of myself, because first of all, I’m
making an honest living. I don’t believe in pressuring people to buy
things they don’t want. (Um-hm) And that should give me pride, and
uh, I’m sure people will notice that…And uh, with that, I, I, I, it’s like
I’m gonna tell my director tomorrow, all that and also, that I hope that
will help me, uh, increase my hours and you’ll look favorably upon it,
even though I haven’t had too many hours but, uh, my director at ETE
said I was taking a wise move because of slowly, gradually increasing
it. And uh, so I hope you’ll take that into consideration as my six
months comes up in the next two weeks – the chances of promotion,
try and make myself look good, and try to think on those terms. I
should be able to cope longer than some of the other people who
probably left because they couldn’t. (Frank Interview 3-29-05)
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Finally, after struggling for several months to keep his job at the grocery
store and trying to remain engaged in the occupation of working, he decided
it might be best to quit. This struggle with keeping his job seemed to also
affect his positive view of himself as someone who was doing well in
recovery, as the following passage describes.
So I’ve made up my mind, you know maybe it’s time after seven
months I stop working there. Because it’s real hard, I can uh, you
know, I can um, relate to that person who gave up and then, uh his job
and had, had this finding, and that sort of thing. And uh, you know if I
can’t align with the progress of everybody else when they get help
and I get help, and it doesn’t work, it doesn’t matter anyway anyhow.
So now I just wanna have everyone feel my pain of disappointment,
and maybe that’s all I’m gonna get out of this lifetime. (Frank
Interview 5-10-05)
It wasn’t too long after this interview that Frank quit his job at the
supermarket. He quit about the time that ETE was closing. The timing was
more than coincidental it seemed. Frank had considered quitting several
times before but the job coaches and case manager at ETE had been able to
work with him and support him so that he just adjusted his hours but
continued to work. Although Frank had struggled with his mental illness in
relationship to his work, he had been proud of working. Even moreso, he had
appreciated future possibilities such as becoming manager of the store.
Lloyd
Most of Lloyd’s interest in working was related to painting houses
which he had been doing for many years (Lloyd Interview 3-10-05). Lloyd
often talked to me about trying to get a painting job. Often he would tell me
about someone he had spoken to about a job but he hadn’t been hired. He
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often spoke of his painting jobs as part of a larger plan to own his own
painting business and have others working for him.
S: For you painting, do you have a goal?
L: Being a CEO and having a big corporation, a painting company.
(Lloyd Interview 5-4-05).
Lloyd even had business cards made for his painting business. I
wondered if painting was his choice of jobs, or just the job with which he was
most familiar and comfortable. I asked him once and he explained it to me
like this:
S: What about um, painting? What about that do you like?
L: Running my own business, having the guys work for me and….
S: But the actual painting, do you like doing that?
L: Yes, I like doing that, yeah.
S: What’s that like, can you describe it?
L: Extra skies and well to make movements more, make me move
into spirits that are like, the pastor at Calvary Chapel would tell me
the last 25, 30 years now.
S: How do you find painting jobs?
L: …Well they, they just pop up because I have a good reputation of
word of mouth and everything but I don’t have to handle the paint
business that, I would inherit, I would inherit the engineering
company of my uncle, rather do that than painting because it’s worth
millions, tens of millions of dollars.
S: Ok, so the painting to you is mainly a source of income—
L: Source of income, yeah.
S: --And if you could do something else that made more you’d
rather—
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L: Right, I rather run, have, my uncle’s company had a big aerospace,
he owned a big corporation himself. (Lloyd Interview 5-4-05)
Even though Lloyd had been painting houses and businesses much of his life,
his primary goal was to make money, painting was just the outlet with which
he was most familiar. He saw the occupation of work as just an end to a
means to becoming a wealthy businessman. Thus he told me that if he could
have worked at something else and made more money, he would have
preferred that.
Summary
Work was a very important occupation to all three men in this study.
It was part of their desire to be seen as something other than someone with a
mental illness, it was a stepping-stone to their larger hopes for their lives, and
it was a way to use their skills and experiences. As in Demetrius’ discussion
of the way people who don’t work are viewed by society, being employed
was also part of fulfilling a societal expectation that people will work
(Christopher & Schlenker, 2005; Ali, Falcone, & Azim, 1995). Working, or
finding work, was also a method for organizing their time and routine.
According to the literature, people with schizophrenia who don’t work,
experience a lack of structure and productivity in their daily lives (Minato &
Zemke, 2004; Neville et al., 1985), and a lack of meaningful social roles
(Marrone & Golowka, 1999). Working or looking for work was a primary
occupation for these three men and organized much of their time.
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Next, I will discuss the participant’s lives as viewed through religious
occupations.
A View of the Participants’ Lives through Church and Religious
Occupations
Demetrius, Frank, and Lloyd all participated in church and religious
occupations. Their religious occupations included attending church, praying,
participating in social events through church, volunteering at church, reading
the Bible and religious books, and listening to religious tapes. These
occupations also sometimes moved them away from being seen as mental
patients or schizophrenic and allowed them to simply be religious
participants. The relationship with church wasn’t always positive, though it
often provided them with support and encouragement.
Demetrius
Besides the desired occupation of being an exporter, being a
church/religious participant was the occupation that was really important to
Demetrius. Demetrius described his participation in church and religion as
one of the most important things in his life in the first interview on 3-14-05.
It was obviously an important aspect of how he saw himself, as when I asked
him what made him “tick.” He had this response:
What makes Demetrius tick is basically, um, religion. I’m a Greek
Orthodox, but before that I was a Baptist for about 15 or 20 years.
Then I was a Seventh-Day Adventist and became a vegetarian for
about 8 years, then I became a Greek Orthodox for…almost 18,
almost 15 years. They say that I have a mild attitude, a mild
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personality and it’s probably because of my religious studies. That I
go to church every Sunday religiously. And um, I’m always reading
the Bible, and I, I listen to the sermons. (Demetrius 3-14-05)
Religion was an important part of Demetrius’ life. He participated in many
religious occupations such as reading the Bible, listening to the sermons, and
praying. He also did much of his socializing around the church, and spent his
free time engaging in the activities there.
So, uh, that’s basically my social life is basically the church. If I have
any social life as far as going to any events or any type of parties, it
has to do with the Greek Orthodox Church, or Cathedral.
(Demetrius Interview 3-14-05)
He also volunteered in the church bookstore after church some Sundays. I
got to see him there once, and he seemed to enjoy his work there and the
other people from the church seemed to respond positively to him in the
bookstore.
Frank
Religion was also very important to Frank. More than participating in
church, Frank described how he saw God as participating in his life.
Well, you know, to, to make it short and brief, there are just so many
examples of how coincidences indicate God is working in my life.
There just is, it’s just not possible to go through all of them. It would
have to take us another session, and I’d probably have to take a
memory pill. (Frank Interview 3-29-05)
He had also participated in social activities such as a singles group at
his church in the past, but hadn’t found it helpful in meeting someone to date:
“I’m sure not willing to go to the singles group that is starting again because
that never worked” (Frank Interview 4-26-05). Frank found studying about
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Christ coming back in the Rapture to be a source of hope for him. He looked
forward to an end to struggling with mental illness: “You know, even if
heaven, was, was to come back, which is I’m always looking forward to
something, rapture and all that” (Frank Interview 9-13-05).
Sometimes though, as he prayed and studied about Christ coming back, he
felt that he was too busy looking ahead to the future and not living fully in
the present.
Prayer, so that, uh, Christ will come back by 2012, the Rapture in
2019, uh…the Second Coming…uh, you know books that might help
me, meanwhile, while I write. Everything is always about things that
are coming up. I’m not living in the present.
(Frank Interview 3-8-05)
Lloyd
When talking with Lloyd, it was apparent that religion was a very
important part of his life. He explained to me that he had been going to
Trinity Church since he was in high school. The theology taught at Trinity
Church - a health, wealth, and prosperity church – was in keeping with, and
even supportive of, Lloyd’s desire to be a wealthy businessman. The overlap
between the church’s teachings and Lloyd’s desire for wealth can be seen in
the following interview:
Yes. Cuz, I like going there because I can be a, a Christian, serve
God, and be very, very, extremely wealthy and be a big multi-type big
millionaire, like they preach over at Trinity Church how to be real
prosperous and everything. If you do God’s will He’ll bless you, He’ll
throw out the blessings of heaven’s window and you’ll become real
wealthy and have more than you can imagine. Jesus Christ made
himself poor so become (sic), we could become entrepreneurs, and
become CEO’s. Stuff like that. That’s why he died. That’s what they
preach, they teach at Trinity Church. (Lloyd interview 5-4-05)
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Besides attending church, Lloyd also engaged in the religious occupation of
reading books by religious leaders and attending special crusades. The
leaders who wrote these books and led these crusades shared similar
theological viewpoints about wealth with his church. In an interview on 3-
10-05, Lloyd described the teachings of these evangelists.
L: And I like to go to Benny Hinn’s crusade, because they’re very
uplifting, and the gifts of the Holy Spirit and everything. I saw Benny
Hinn twice at a crusade, in the past, (hm). He was real good. So was
Kenneth Hagen, so was Oral Roberts, and T.J. Hicks, and people like
that (hm). I don’t know about Jim Jones, I haven’t been to that one
yet.
S: What do you find helpful about what they say?
L: That, uh, if you follow God, and, and, let God do it, he’ll make me
very wealthy and prosperous. Have my business prosper like crazy.
Lloyd’s relationship with church and religion wasn’t all positive.
Lloyd said that he had tried to join the Mormon Church during the 80’s. He
said that they turned him away because of his history of mental illness:
I tried to become a Mormon like several years ago, back in the
eighties. They said it would be a problem because my history and
mental health, my ability to take care of myself and everything.
(Lloyd Interview 7-7-05)
Lloyd had a particular fondness for one of the Pastors at Trinity
Church – Brother Dan. Lloyd told me that Brother Dan was the assistant
pastor of Trinity Church, but he said that Brother Dan was there even before
the head pastor came. When I asked Lloyd on 5-4-05 about what was
important to him in life, or gave him meaning, he mentioned Trinity Church
and the teachings of Brother Dan.
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Summary
Demetrius, Frank, and Lloyd all participated in church and religious
occupations. They each reported finding hope and support through this
participation and these occupations, as well as allowing them to be seen as
just another religious participant, and not a mental patient. Demetrius felt
that participation in religion was an important part of what made him mild-
mannered and helped define who he was. It was also a social outlet for him.
Frank found hope in God’s involvement in his life and in anticipating
Christ’s return, though he worried that he was looking towards the future too
much. Lloyd found support and encouragement for his hopes of becoming
wealthy through his church participation. Church wasn’t always a supportive
place for him as he was once turned away from joining another church
because of his mental illness. It is not surprising that these three men found
meaning in participating in some religious occupations since occupations
have been defined as having spiritual dimensions (Hinojosa & Kramer,
1997). The literature also describes religion as an important element for
coping with mental illness (Rogers, Poey, Reger, Tepper, & Coleman, 2002;
Koenig, Larson, & Weaver, 1998).
In the final section, I will describe the participants’ engagement in
leisure occupations and the meanings those leisure occupations had.
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A View of the Participants’ Lives through Leisure Occupations
Demetrius, Frank, and Lloyd all participated in leisure occupations
that were meaningful to them. The leisure occupations in which they
participated were many and varied by person. All three men participated in
leisure occupations that were related to their work interests to some extent.
Demetrius and Frank also participated in health related occupations. Lloyd’s
leisure interests were more recreational.
Demetrius
Demetrius enjoyed studying languages. He studied Spanish and
Japanese on his own at home. He spent quite a bit of time each day studying
these languages from textbooks he had acquired. He once told me that he had
been through the textbooks more than once, because that is what it took to
really learn from them. The particular languages he studied are ones that he
felt would be helpful in his quest to become an exporter.
Oh yeah, languages, the tower of Babel….And so I also knew that
some of the people in Saudi Arabia when I was up at the university,
they spoke 4 and 5 different languages, and…people in Europe, they
speak 3,4,5,6 different languages. So I was, I was exposed to that
culture, and so I said “if I can speak 3 languages that would be fine,
that would be good for me.” And on the West Coast, you have the
influence of Mexico, which is Spanish. Half the streets are written in
Spanish. And then you have, uh, Japan, which is a G-7 country,
which means there’s seven countries that are the most industrial
countries or richest countries in the world, and they are the United
States, England, France, Canada, Italy, Germany, and Japan, and also
now Russia. And so, these are the wealthiest countries in the world,
and if you can speak these languages, your opportunities increase.
(Demetrius Interview 3-14-05)
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Demetrius discussed the importance of his hobbies as more than just
fun, and a way to pass the time. His bodybuilding was something related to
his desire to work in healthcare, it was also about his idea of pursuing health.
His pursuit of health and wellness and led to him becoming a lifelong
bodybuilder and vegetarian.
And so, eat the right foods, nutrition, I became a vegetarian because
of it. And um, had these, in the muscle magazine they had all these
different products and so, it was right along with my university
because when they’d lift weights to play football, they, they have to
lift maybe 200, 300 pounds, and so to build upper strength, that’s
what gave the university the advantage over other teams in United
States, it basically came out of Venice Beach. Lotta people don’t
know that, but today, even the Heisman trophy, like if you look at the
gym that’s on campus, that gym is only bout 20, 25 years old. But um,
when our school was competing against all these other schools, lot of
the football players went to Gold’s Gym to do their training. And so
when you have these guys with all these muscles going up against
these other teams that don’t have it, the program, of course they
would be NCAA champs. So, uh, the program worked so well that the
university started to invest money to have their own equipment on
campus, where guys could come in, and girls could come in, and lift
weights. So I was, I was brought up in that type of environment. So, I
just kept, stayed with it. (Interview 4-25-05)
Since Demetrius wasn’t working yet, occupations associated with
working supported his desire of working in exporting. He researched
aspects of the exporting business at the public library, which allowed him to
have access to a network of peers. He studied Spanish and Japanese because
these languages would allow him to do business with important markets in
Spanish-speaking countries and Japan. His religious occupations such as
prayer and participating in church, helped support his hopes of being able to
run his own exporting business one day. Engaging in the occupations of
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being a religious participant, as well as doing body-building, being a
researcher, and studying languages also positioned him to be seen in a
positive context. Instead of being seen as disabled in some way, he could be
seen as a productive, healthy, educated member of society who was working
towards his goals.
Frank
An important occupation to Frank that he often talked about was his
writing. He explained to me, though, that he hadn’t always been interested in
writing, as he described his process of writing his books.
Well I think it started back in ’98. That was the, the far, the uh, the
farthest back time I could remember that I started thinking about it,
but it wasn’t until around 2001 that I actually started filling in the
framework, and then after that, I started wavering here and there, and
I started adding some divisions, and then after that, I s—I , it was just
this, the beginning of this year that I really started seriously filling in
all the gaps. (Frank Interview 4-26-05)
He said he did most of his writing in the dining room of his house.
When I visited his house on 4-26-05, I saw that he had a large blotter on the
dining room table and some papers and books. It seemed that his working
location in the center of the house spoke to the centrality of writing in
Frank’s life. Frank said he wrote frequently and his writing was linked to his
quest for recovery. Once when I was interviewing Frank, he talked to me
about how he saw himself rehabilitating through his writing: “I try to
compensate in my writing, for uh, anything that I have weaknesses in” (Frank
Interview 3-8-05).
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In the following passage as well, it seems clear that Frank also sees
his writing as a way to reach out and help others.
[I would like to] one day make contact with these people who have
inspired me and get my word out too but about how I’ve, uh, re-
cooperated, how I’ve rehabilitated, and uh, you know like my
psychiatrist says, it may not help everyone, but whoever it helps, it’s
worth it. (Frank Interview 3-8-05)
Thus Frank’s engagement in the occupation of writing was important part of
how he saw himself and how he made progress towards his recovery. He felt
that his writing allowed him to express what had been helpful to him in his
recovery, as well as helping him in areas of recovery in which he was still
struggling. He respected writing in general and felt that he would be able to
share his insights and recovery through my writing as well. Just as central to
Frank’s life and recovery as writing, was the occupation of reading. In the
next section I will look more at how reading was an important occupation to
him.
Reading was also another important occupation for Frank. He read a
lot of books in an effort to find new ideas for his own recovery from mental
illness.
No, like the book says and what I’ve always tried to do, I’ve tried to
read things that will change me. If they don’t change me, I don’t
bother with it. (Frank Interview 3-8-05)
Not only did Frank read books looking for new strategies and ideas, he
re-read them trying to get as much from them as possible towards his
recovery, as he told me in the very first interview I did with him:
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F: Yeah, I’ve read a lot of books. They all give me a different,
uh…uh, view of how to help myself….
S: What, what about it have you found to be helpful?
F: That I can read it over and over again, and its, uh, which I don’t
have to depend on my own writing to read over and over to help
myself re-cooperate. I can start already without, and still try to
complete my work. And if something happens to my work, at least
I’ve done something else to help myself – that sort of thing. (Frank
Interview 3-8-05).
Frank was constantly looking for new books to help him in his
recovery. He often visited the library as a source of reading materials. He
also told me once that he had even found one of the books he found helpful in
the book section of the supermarket where he worked. Though he found
exercising to be a helpful occupation in different ways than reading, it was
still an important occupation to him. I will describe his participation in the
occupation of exercising in the next section.
Exercise was another important occupation for Frank. He saw
himself as someone who worked on his physical fitness and tried to improve
his weight and health. One of the exercises that he enjoyed participating in
was what he described as Christian Martial Arts. He did this once a week.
He let me know that this class was led by an instructor who trained with one
of Bruce Lee’s students. The class was held on the campus of a church, and
had from 2 – 6 students in it. He was also working on developing his own
exercise program, which he performed regularly. He had made up cards that
he showed me on which he had written different exercises on a number of
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repetitions to do. Frank told me that he went through several types of
exercise during his exercise time each day.
Well, I’ve tried every exercise you can imagine, resistance, I’ve
combined one with another and made up something myself. You
know, I’ve…I’ve put bands around my uh, rower and did crunches
using my own system, I use a bar and uh, resistance, to do push-ups. I
just make things up myself. (Um-hm). And uh, put two things
together that no one thought about. Sort of like, what Bruce Lee tried
to do. (Frank Interview 3-8-05)
He seemed to enjoy identifying with Bruce Lee and also enjoyed the
creativity of making up his own exercise program. Frank also said he also
enjoyed walking regularly “Every time I feel like walking I’ll walk. I’ll try to
make it at least three times a week, but…I at least take a walk” (Frank
Interview 3-8-05). Frank pursued his interests in fitness and health with
much energy.
And I also learn a lot about nutrition. I mean just when I got, like I
got a caliper, you know those things that measure your fat? And I
learned a whole lot about nutrition and exercise when I bought that,
even though I returned it. (Frank Interview 3-15-05)
Throughout all of Frank's occupations, he expressed and reinforced
his desires to be a successful worker, writer, person who has rehabilitated,
reader, and creative fitness participant. He continued to find these "normal"
occupations to be desired views of himself, despite his struggles. He would
however, sometimes express great frustration with how his continued
struggles with mental illness made his goals more difficult.
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Lloyd
Lloyd didn’t talk too much about leisure occupations. He said that he
mostly did the activities at the group home. The following is his response to
how he spent his time at the group home. “Little sleep, relax, uh, listen to the
radio. Then comes Bible study or activities, I do a single or they have group
activities there [at Lloyd’s group home]” (Lloyd Interview 5-4-05). He also
told me about how he was taking a class to learn more about computers
because he thought it might be helpful to him in his business (Lloyd
Interview 7-7-05). The only other leisure occupation outside the group home
that he seemed to pursue at least periodically, was fishing. He told me that he
liked both saltwater and fresh-water fishing and described a fairly recent
fishing expedition he had been on.
S: Did you catch anything?
L: Uh, no. Had a good time. I caught something, got away. It was way
too big for check line.
S: Oh yeah? How far about?
L: The check line goes up to 25, then goes 30-something out.
S: Broke the line?
L: Fish broke the pole. All. Side is cracked. ( Lloyd Interview 5-4-05)
Most of the other leisure occupations he mentioned, he either
presently didn’t do often, or maybe not at all. He told me in an interview on
7-11-05 that he wished he lived near the water so that he could engage more
regularly in fishing, and swimming, and other water sports that he liked.
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Lloyd explained to me some of the reasons that he no longer engaged
in the kind of leisure occupations he had done earlier in his life:
L: Ye—Yes. I still have hobbies I used to, and I like to get back to it
again, like used—fishing, things like that, surfing. Used to surf when I
was a kid, be a surfer.
S: And what made you stop?
L: Getting too old for it, got dizzy, got, my, my company that I
inherited from my uncle. Inheritance, have to watch after.
S: So you don’t go fishing anymore either?
L: No, not very often.
S: And you said it’s hard to go scuba diving cuz it’s expensive.
L: Expensive, yeah, right.
S: Do you have other things you do though, just for fun?
L: Going on vacations with my parents.
S: Where do you go?
L: Cruise and stuff, see relatives, different things like that. (Lloyd
Interview 4-28-05)
Lloyd still participated in fishing and was taking a computer class.
Though Lloyd had difficulty participating in some of his previous leisure
interests, he participated more in activities at the group home. Living in the
group home could have made accessing outside occupations more difficult
and made it more convenient just to do the activities already provided at the
group home.
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Summary
Demetrius, Frank, and Lloyd all engaged in leisure occupations. They
participated in occupations that helped them in their life and career goals, as
well as goals just for recreation. Demetrius had leisure occupations of
learning languages were more related to his employment goals of becoming
an exporter, and could also be seen as productive or work occupations.
Frank’s primary leisure occupation was writing, though it could also have
been seen as a productive or work occupation. Demetrius and Frank also
both engaged in leisure activities related to fitness. Even though Demetrius
wasn’t working and Frank was only working very part-time, their
occupational choices to spend so much of their time engaged in productive
occupations was more in keeping with Minato and Zemke’s (2004) findings
about the amount of time spent in productive activities for those who were
employed. Lloyd’s leisure occupations were more often recreational and
involved activities easily accessed at the group home. Lloyd’s leisure
occupations of relaxing, and listening to the radio were very much in keeping
with Minato and Zemke’s (2004) findings that people without a work routine
spent more of their time listening to the radio and watching television.
Lloyd’s more unstructured time use was also in keeping with Suto and
Frank’s (1994) findings about the difficulty of organizing an occupational
agenda while living in a board and care home. This makes sense since Lloyd
was the only one of the three men who lived in a group home.
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Final Summary
Demetrius, Frank, and Lloyd had all been diagnosed with
schizophrenia. Though none of them seemed completely accepting of the
diagnosis, they worried less about the specifics of their diagnosis and more
about the stigma that came from living with it. They often chose to distance
themselves from the diagnosis and much preferred to be seen in relationship
to their occupations. Overall, Demetrius, Frank, and Lloyd engaged in a
variety of meaningful occupations. These occupations served many function
in their lives – from structuring their use of time to helping them have more
positive social roles than just being mentally ill. Their engagement in
occupations also provided them with goals and a sense of accomplishment as
they pursued them. They found encouragement for pursuing other goals as
they engaged in religious occupations, and occupations provided them with
outlets for socializing with others.
These three men also had difficulty accessing some occupations
which were important to them in large part due to living with schizophrenia.
Work was something that each of them valued and tried to attain with more
or less success. Sometimes they would have difficulty acquiring jobs due to
stigma attached to having a diagnosis of schizophrenia. Sometimes the
difficulties that came from living with schizophrenia such as anxiety and
paranoia made it difficult to get and/or keep a job. Also, because these three
men wanted particular jobs and wanted to be well-paid, they had difficulty
accessing the kind of employment they were seeking. They also had
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difficulty at times accessing leisure occupations due to constraints such as
inadequate funds for the type of leisure interests they wanted to pursue.
These kinds of difficulties accessing meaningful occupations have
been discussed by Wilcock and Townsend (2000)) in their work on
occupational justice. Occupational justice is when a society provides
“equitable opportunity and resources to enable people’s engagement in
meaningful occupation” (Wilcock & Townsend, 2000, p. 85). In the case of
these three men who are living with schizophrenia, they have had difficulty
accessing meaningful occupations both because of having the diagnosis itself
and because of lack of opportunity. When people are unable to access
meaningful and important occupations because of external restrictions – in
this case stigma and lack of opportunities, these difficulties have been labeled
as occupational deprivation (Whiteford, 2000). By recognizing the
difficulties in accessing occupations as in large part due to societal issues
such as stigma and lack of opportunity, and labeling these difficulties as
occupational deprivation, we are moving towards a recognition of societal
responsibility in addressing these issues.
In the next chapter, I will look at the intersection between hope and
occupations from the literature, and in the lives of the three participants in
this research study.
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Living Hope
“Hope is the thing with feathers that perches in the soul.”
(Dickinson, 1960)
Introduction
I began this study believing hope to be powerful, both from my own
experiences and from my work as an occupational therapist in mental health.
I thought hope might be particularly powerful in the lives of adults living
with schizophrenia. I also wondered if their hopes would be related to their
occupations. In the course of conducting this research, I did find hope to be a
powerful force in the lives of the three men who participated in this study –
Demetrius, Frank, and Lloyd. I began to see their hopes not just as cognitive
plans but as powerfully connected to their daily occupations – both directing
and shaping their occupations and in turn being shaped by their participation
in many types of occupations. In this way, I began to see hope as existing in
the everyday acts of living, thus the idea that these three men were living
hope. I also learned about the process of hoping in which these men
engaged, which included adapting their hopes as they encountered obstacles.
I learned several other important lessons about hope that I hadn’t anticipated.
I learned that there is a social aspect of hope that can be powerful even in the
research process. They taught me about the resilience of hope despite
encountering difficulties and critics. I also learned from them that hopes may
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be more grounded in possibility than they may at first appear, and that role
models can be important in sustaining hope.
In this chapter I will begin with a brief historical overview of the
concept of hope, describing the growing presence of hope as a topic of debate
and research in recent history. Though there are many important theories of
hope to be found in the literature, I will only briefly describe some of them
and then give more specifics of the theories I am using in this dissertation.
Next I will define hope and discuss the conflicting views of it as both a
positive and negative force. I will look specifically at what has been written
about hope in the OS/OT literature, literature from the field of mental health,
and in first person narratives.
Then I will present hope as it appeared in the lives of the three men in this
study.
Since work was such a prominent theme of their hopes, I will
particularly focus on their hopes related to work and how they tenaciously
held onto these hopes. They were able to retain these hopes for work despite
employment and mental health services that seemed to disregard their hopes
and even tried to dissuade them from pursuing their hopes. I will focus on
how each of these participants found support for his hopes in relationships, in
role models, and in religion. I will discuss how their occupations influenced
their hopes, and in turn how their hopes influenced their occupations. Then I
will present each of these men’s views on hope and their views on people
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who give negative feedback about others’ hopes. Finally, I will describe how
each man responded to others’ criticisms of their hopes.
A Brief History of Hope
Hope has been a theme in literature, religion, and philosophy
throughout history. Some of the earliest records referring to hope come from
mythology and religion (Eliott, 2005). In Greek mythology, Pandora was
given a box that she was never to open (Panofsky & Panofsky, 1991). When
her curiosity compelled her, she opened it and released all the evils on the
world. The only thing that remained in the box was hope. Writers of the Old
Testament of the Bible (New Revised Standard Version) used hope as a
theme in the Psalms (songs), and Proverbs (wisdom sayings). In the New
Testament of the Bible, there are numerous references to hope such as in
Paul’s letter to the Corinthians, 13:13, highlighting the importance of hope in
a trilogy of faith, hope, and love. Also in the New Testament, Paul’s letter to
the Romans, 8:24-25, the virtues of hoping something without knowing it are
described.
In the literary tradition, Aeschylus’ (trans. 2002) Agamemnnon
mentioned hope as that which exiles depended upon to keep up their spirits.
In the Fourteenth Century Dante Alighieri (2002 version) wrote in his Inferno
that upon the gates of hell was written an admonition to abandon hope.
Later, in the late Sixteenth to early Seventeenth Century, in Richard III
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Shakespeare (1981 version) described the power of hope to raise spirits such
that it could make kings into gods and lesser men into kings.
While hope has been a theme throughout history in religion,
mythology, and literature, many of the substantial treatises on hope have been
written more recently. The philosopher Immanuel Kant (1929/1965) wrote of
“What may I hope?” in his Critique of Pure Reason in the Eighteenth
Century. There was an explosion of writings on hope in the later half of the
Twentieth Century (Eliott, 2005). In a 1951 translation Gabriel Marcel wrote
in Homo Viator: Introduction to a Metaphysic of Hope that “there can strictly
speaking be no hope except when the temptation to despair exists. Hope is
the act by which this temptation is actively or victoriously overcome (p. 36).”
Ernst Bloch (1959/1986), a philosopher, wrote an extensive examination of
hope both historically and socially from an Atheist’s perspective. A
systematic study of hope from a philosophical perspective was undertaken by
Godfrey (1987). In his study he outlined a theory of hope in dialogue with
Kant, Marcel, and Bloch’s works on hope. In Habits of Hope: A Pragmatic
Theory, Shade (2001) delineated a theory of hope from the pragmatic
philosophical tradition in which he discussed hope as a process of relating the
means necessary to achieve the desired ends. He described his theory as
hope having two components: “being grounded in real conditions and being
productive of new and better ones (Shade, 2001).”
Additional thinking about hope and its possibilities comes from more
recent disciplines such as psychology and medicine. Stotland (1969) wrote a
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book entitled The Psychology of Hope in which he discussed a clinically
derived theory of hope and its application particularly to psychological
problems and mental illness. Snyder (2000) edited and contributed to the
Handbook of Hope, which outlines the relevance of hope to a variety of
psychological problems and physical illnesses. Hope and Hopelessness:
Critical Clinical Constructs (Farran, Herth, & Popovich, 1995) examined
hope in a variety of diagnoses, such as mental illness and cancer, and with a
variety of populations from children to the elderly. Similarly, Dufault and
Martocchio (1985) put forth a theory of hope in their book Hope: Its Spheres
and Dimensions, based on a study of elderly cancer patients. This hope
theory has been applied broadly to both mental and physical illnesses.
Thus, hope has been a subject of reflection and study for centuries in
traditions such as philosophy, literature, and religion. In the later half of the
Twentieth Century, research and theorizing about hope proliferated. Much of
the increased interest in the concept of hope comes from disciplines such as
psychology and medicine and their intersection with life issues such as
terminal illness and mental illness. As people from these disciplines have
worked with clients who have chronic and terminal illnesses, hope has been
used as a way of understanding struggles and transcendence.
All of these theorists add to the body of literature about and
discussion of hope and its potential. Even though a dissertation does allow
more breadth and depth than what is possible in a journal article, even a
dissertation does not allow for a full discussion of the theories of hope. It
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also would not be possible to address all of this growing and diverse body of
literature within this research. As such, there are some theorists that I have
used more extensively to provide a grounding for this dissertation research. I
pay particular attention to the clinically derived theories of hope from
DuFault and Martocchio (1985), Groopman (1994), and Snyder (1994). I
also use extensively the philosophical theory of hope by Shade (2001) and
Godfrey (1987).
In order to enter the larger conversation about hope, it is first
necessary to define hope as I have used it in this study.
Defining Hope
Hope is often differentiated into two broad types – a general type that
pervades one’s outlook and a more particular type related to specific goals or
outcomes (Farran, et al, 1995; Shade, 2001). The generalized aspect of hope
has no specific end in sight; it can function as an overall outlook on life or on
a particular situation (Dufault & Martocchio, 1985). It is also sometimes
referred to as hopefulness (Shade, 2001) or fundamental hope (Godfrey,
1987). This type of hope is an attitude that maintains an openness to future
possibilities (Godfrey, 1987; Shade, 2001). It can act to protect against
despair and restore meaning when specific hopes fail to be realized (Dufault
& Martocchio, 1985). Thus generalized hope can be a wellspring that can
give root to new specific hopes when old hopes have withered and died. It
can also serve to nourish ongoing hopes. Hope has sometimes been
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described as rather vague and indefinite, unquantifiable to some extent
(Farran et al, 1995). This more vague sense of hope is probably related to the
general type of hope rather than the specific type of hope.
Bloch (1959/1986) writes about this kind of general hope as a process
of daydreaming. In this kind of daydreaming, we reach beyond what is
possible in the present and imagine other possibilities, some not yet
conscious (Aronson, 1991). Bloch’s theory of hope not only imagines what
might be possible, it is a possibility that might be if we do something to move
toward this positive hoped for direction. In this way, Bloch’s view of hope
can be seen as a call to action for social transformation (Giroux, 2004).
Specific hopes, though related to general hopes and sometimes built
upon them, are different from them in a number of ways. One of the most
important ways that specific hopes are different is that they are more defined.
This more defined type of hope is sometimes referred to as particular hopes
or fundamental hopes (Godfrey, 1987; Shade, 2001). This type of hope is not
an abstraction; it is something that must be understood as occurring in a
particular circumstance in an individual life at a specific time and with a
particular object of hope (Shade, 2001; Dufault & Martocchio, 1985).
The more specific type of hope seems most closely related to
occupation; thus it is the form of hope that I focused on for this study.
Specific hopes, or particular hopes, are about desired future outcomes that
must be perceived as possible to the person hoping but are not at all certain
(DuFault & Martocchio, 1985; Shade, 2001; Farran et al, 1995). Since the
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person who is hoping perceives the object of his/her hope for desire as
possible to attain, hopes are more than just wishful thinking that may not be
perceived as at all possible (Nunn, 1996). At their most basic, specific hopes
are about possibility and desire (Godfrey, 1987). For this research, I used the
definition of hope as the desire for some specific outcome perceived as
possible by the person hoping.
The Positive Side of Hope
This idea of hope as a combination of desire and possibility can lead
to forward motion in the pursuit of the hoped-for result. This is similar to
Mattingly’s (2000) discussion of the narrative theory based on clinical
encounters between occupational therapists and patients. In her discussion of
clinical narratives, she described desire and possibility as a vehicle for
propelling a client forward in a clinical plot constructed by the therapist.
This process of moving forward towards hopes is also something found in
hope theory literature. In a pragmatic tradition, when Shade (2001) discussed
particular hopes, he said they involve an activity connecting means with ends.
There can be no ends apart from means, thus he said that hope is best seen as
the action of hoping. It involves the process of trying to find the means to
achieve the hoped-for ends. In this way, hoping is part of a process that
leads to further activity and further hope.
Snyder’s (1994) theory of hope from a psychological perspective also
involves a process of hoping. In his theory hoping is a cognitive process.
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Hope is described as a combination of three things – goals, willpower, and
waypower. Goals are the desired ends. Willpower is the feeling that you are
able to achieve the goals. Waypower is the ability to find the means to
achieve the goals. Inherent in Snyder’s definition of hopes is the process of
figuring out how to achieve them with waypower and feeling they are
attainable so that there is forward movement through willpower.
Groopman (2004) discussed his theory of hope that is derived from
his practice as a doctor in hematology and oncology, and from his own
experience with chronic pain from a back injury. He described the process of
hope that takes place when someone is struggling with a difficult diagnosis.
In the process of hope, Groopman (2004, p. 120) said “hope can be imagined
as a domino effect, a chain reaction, each increment making the next more
feasible.” This combination of desire and possibility creates a powerful force
for moving forward in a process of hoping.
Studies also demonstrate the power of hope in its ability to influence
health. In a study by Herth (1990) of elderly widows and widowers, there
was a significant positive relationship between effective grief resolution and
having a high hope level. Meadows, Kaslow, Thompson and Jurkovic (2005)
did a study of protective factors against attempting suicide in African-
American women who were experiencing domestic partner violence. They
found having higher hope and more family social support to be highly
predictive of women not attempting suicide. Hope was also positively
correlated with quality of life, and negatively correlated with anxiety and
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depression in Italian cancer patients (Vellone, Rega, Galletti, Cohen, 2006).
A strong positive relationship was shown between hope and well-being in a
study of women caring for family members with Alzheimer’s Disease (Irvin
& Acton, 1997). Thus hope is a force whose impact can be seen across the
breadth of human endeavors and can even influence the quality and quantity
of life itself.
Though hope has been written about as a positive force, the concept
of hope is not without its detractors. In the next section, I will describe some
of the criticisms of hope.
The Negative Side of Hope
Though hope can be powerful, the question arises as to whether it is
always positive. Some have written of hope as fickle, even capricious.
When author Emily Dickinson (1960) in the Twentieth Century wrote
“‘Hope’ is the thing with feathers that perches in the soul,” she captured the
duality of hope. Hope, like a feathered bird, can take us to faraway and out
of reach places that we could never reach without it. Like a feathered bird,
though, hope can be elusive at times and evade our grasp, leaving us empty-
handed and perhaps defeated. This duplicitous nature of hope seems to be a
theme echoed throughout literature, religion, psychology, and healthcare.
In Greek tragedies such as Sophocles’ (trans. 2001) Antigone, the
chorus warned Creon of the good and bad side of hope. Elliott (2005)
describes how the Greek myth of “Pandora’s Box” has sometimes been
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interpreted in modern history to mean that hope was the one gift left hiding in
the box when all the evils of the box were released on the world. She
describes how an earlier interpretation of the story, though, had hope as the
final evil in the box – the invitation to “foolish over-optimism” (Elliott, 2005,
p. 5). Benjamin Franklin (1997), commenting on the fickleness of hope, once
said that if you depended on hope to sustain you, you would die hungry.
Probably, these admonitions about the fickleness of hope arise
because of the dire consequences when someone loses hope. Some have seen
hope as a siren luring unsuspecting hopeful people onto the rocks of despair
when their hopes are found to be unattainable. When hope is lost, the
outlook is bleak. For those who have lost hope:
Truly these individuals are imprisoned in a drab world of limited
opportunities. Without a horizon of meaning rich enough to breed
promising possibilities, even the simplest of tasks becomes an
onerous difficulty that is either unworthy of our efforts or altogether
impossible to achieve. (Shade, 2001, p. 147)
Thus the consequences of losing hope can be serious, to the point of inaction
and death (Nunn, 1996; Frankl, 1963).
Because of these dire consequences, when someone loses hope there
has been discussion about whether healthcare providers should intervene
when a client has hopes that seem unrealistic. These unrealistic hopes are
also sometimes labeled “false hopes” because they are seen as unattainable
(Polivy & Herman, 2000) or based on “unrealistic positive outcome
expectancies” (Kwon, 2002). This idea of false hope leads to questions with
which healthcare providers have struggled, such as whether patients who
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have difficult or even deadly disorders should hope against hope that they are
cured, or be dissuaded of what might be considered false hope and have to
deal with reality (Wilkinson, 2005; Miller, 1998, Ruddick, 1999). Many of
these questions about hopes are related to a larger debate in medicine about
the “patient’s” autonomy and control, versus that of the healthcare provider
(Badcott, 2005). Perhaps part of this feeling of “responsibility” for making
sure that a client is not hoping unrealistically comes from what has been
described as a western medical atmosphere of “benevolent paternalism”
(Badcott, 2005, p. 177). Healthcare providers feel responsible for their
clients and are sometimes reluctant to let them chart their own course if it
might involve the possibility of bad outcomes. Such questions also occurred
when I was working in mental health services. Should people with mental
illnesses hope and aspire to goals that some may deem “unrealistic,” or label
“false hopes”? Should people with mental illness be steered towards
“realistic” hopes and goals?
Responding to the Criticisms of Hope
Some hope theorists and healthcare providers have tried to endorse the
power of hope, and avoid the pitfalls of “false hope,” by theorizing that
“false” hopes based on unrealistic expectations are not really hopes at all.
Writing from the pragmatic tradition, Shade (2001) differentiated between
good hopes and bad hopes. Good hopes are those that have possibility of
attainment, and bad hopes are those that are “blind hopes” without resources
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for the possibility of attainment. Groopman (2004) wrote about the
difference in types of hopes from his experiences as an oncologist and also
his personal experiences with a back injury. He, similarly to Shade (2001),
suggested that there is a difference between true hopes, which are based on
knowing the facts, and false hopes which are based on some form of
deception. Godfrey (1987) wrote in his theory of hope that there is difference
between hopes and fantasies. Hopes have a likelihood of fulfillment.
Perhaps as these hope theorists suggest, the problem is not with hopes, but
with unrealistic and unattainable desires that are sometimes mistakenly
labeled as hopes. Yet, who decides what is unattainable? According to
Shade’s (2001) definition, hope is something that is believed to be possible
by the person hoping. What happens if the person believes what they are
hoping for is possible but it ends up being unattainable? Was it a true hope?
Later in this chapter, I will examine these questions about hope, and the
potential problems with hope in the lives of the three men who participated in
this study.
Thus, literature about hope provides a view of hope as a powerful
positive force that can lead to transcendence of difficulties, and can positively
impact health. The potential negative side of hope has been described as
when hopes may lead people to aspire to that which is unachievable and lead
to despair. Some theorists and researchers have responded by saying that
these unachievable desires were never really hopes, because hopes must
contain a measure of attainability. In the next section, I will look at how
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hope has been written about in the OS/OT literature and literature from the
field of mental health. I will look specifically for how hope is related to
living with schizophrenia and to occupations. I will also include passages
about hope from the first person accounts of adults with schizophrenia.
Hope and Schizophrenia in the Occupational Science and Occupational
Therapy Literature
In the occupational science and occupational therapy literature, there
is little research concerning hope viewed through occupations in the lives of
persons who have schizophrenia. However, several studies focused on hope
in general or hope with persons who have other diagnoses. Neuhaus (1997)
conducted a qualitative study to learn more about how occupational therapists
(OT’s) use hope in their practice. This study found that OT’s reported using
hope in their practice; however, they often documented it as something else
because of concerns that addressing hope in treatment wouldn’t be
reimbursable. Spencer, Davidson, and White (1997) discussed the
emotional, cognitive and spiritual aspects of hope. They proposed three
strategies for using hope in occupational therapy practice based on their
research experience and the literature. The three approaches they proposed
were “goal setting and goal attainment, examination of change in a client’s
occupational configurations over time, and qualitative interviews about life
history or narratives (p. 193).” A study by Borell et al. (2001) examined
hope as it related to occupations. They interviewed 21 older adults with
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disabilities about their participation in occupations. They described a loss of
hope as being related to loss of enjoyment in occupations for these older
adults. As an occupational scientist, Mattingly (1999a, 1999b), has also
presented papers about hope in the struggles of African-American parents
whose children are ill or disabled in some way. Though it seems to be a more
recent development, hope has become the subject of some research related to
occupation, just not with adults who have schizophrenia, and not about the
mechanism of hope relative to occupations.
Hope and Schizophrenia in Literature from the Field of Mental Health
In literature from the field of mental health there is also a paucity of
studies related to schizophrenia and hope. Of four studies that I found
concerning schizophrenia and hope, three focused on loss of hope and
hopelessness (Birchwood, Mason, MacMillan, & Healy, 1993; Aguilar et al,
1997; Hoffman, Kupper, & Kunz, 2000), while the fourth addressed the
predictive ability of two Snyder Hope Subscales – agency/goal motivation,
and pathways/goal planning (Cramer & Dyrkacz, 1998). Of the three studies
that addressed hopelessness, one found that poor rehabilitation outcomes are
better predicted by external loci of control, negative self-concept, and
depression than negative symptoms of schizophrenia such as blunted affect,
emotional withdrawal, and difficulty with abstract thinking (Hoffman et al.,
2000). Another demonstrated that the perception of not being able to control
the illness correlates highly with depression for people who have
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schizophrenia (Birchwood et al., 1993). Loss of optimism was found to lead
to hopelessness and thus to a poor outcome, according to the third study
(Aguilar et al, 1997). These three studies did indicate the importance of hope
in the lives of people with schizophrenia by describing the negative
consequences of losing hope. The study that examined the predictive ability
of two Snyder Hope Subscales looked at its ability to predict pathology on
the Minnesota Multiphasic Personality Inventory [MMPI] in a group of
college students (Cramer & Dyrkacz, 1998). This study found that a low
score on the Agency Subscale had the most predictive ability for symptoms
of schizophrenia on the MMPI in the group of college students studied.
Though these four studies didn’t describe much about the experience of hope
while living with schizophrenia, they did indicate that hope is an important in
the lives of adults with schizophrenia.
For me, the most compelling works about hope as it impacts the lives
of adults with schizophrenia came from first person accounts. For example,
Dykstra (1997, p. 698) described her battle for many years to achieve her
hopes of graduating from college, despite her struggle with schizoaffective
disorder and despite being told by a psychiatrist that she would never
graduate:
After completing day treatment, I was determined to finish my
degree. College had been an on-and-off 14-year struggle. Studying
was not easy. Because of poor concentration, I had to re-read
countless sentences and settle for low grades on in-class exams. In
the past, I even had to withdraw from several sessions because the
stress was too much. Despite all the setbacks …I finally received my
B.A. in political science.
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Parker (2001), an adult with schizophrenia, described her hopes as
wanting to get back on her feet and lead a “normal” life. In her definition of
the “normal” life she would like to lead, she described hopes for a future of
possibilities beyond her diagnosis – “Normal is a very subjective word so I
will clarify it by saying that I want to lead a life free from the symptoms of
my illness, with a partner, a family, and a career” (Parker, 2001, p. 718).
Greenblat (2000) described the difficulties of living with schizophrenia and
coping with the constant presence of voices she hears. She had hopes of
finishing school after being diagnosed with schizophrenia and despite being
hospitalized 13 times. She described her pride in achieving her hopes “I
graduated magna cum laude….[and] I’m now enrolled in a master’s program
in the Johns Hopkins School of Public Health (p. 243).” In another narrative,
a person struggling with psychosis seemed to find power through hope as she
described how she realized there were possibilities for life outside the
seclusion room in the psychiatric hospital (Davidson & Strauss, 1997).
These studies and first person accounts are important because they do
indicate that hope is important in the lives of people living with
schizophrenia; however, none really examined the influence of hope on
adults with schizophrenia as they lived their lives. Nor did any focus on hope
through the lens of engagement in occupations or daily activities. That is
why I have attempted to do in this study. I examined hope as a force in the
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lives of the three men in this study, and explored the relationship of hope to
occupations.
I will begin by examining hope in the context of the research process.
Next I will discuss each participant’s hopes. Each of their hopes will be
examined as part of a process of hoping. How each participant used role
models, relationships, and religion to support their hopes will be the next
section. Finally I will examine how each of the participants has dealt with
critics of their hope and the advice they give about hope.
The Research Process as a Source of Hope
A relational source for hope comes from someone helping another
person hope; and in the process, hope is created not only for the person being
helped but also for the person helping. Shade (2001), who wrote of hope
from the pragmatic tradition within philosophy, speaks of the reciprocity of
this hoping process as growing out of the social nature of hope. When we
help another person hope, we create and reinforce the possibilities of hope
within ourselves. One additional aspect of the relational nature of hope is
contained in the sharing of stories. When stories of hope – whether real or
fictional – are shared between people, the seeds of hope are nurtured for all
(Shade, 2001).
I had read about the social and reciprocal aspects of hope as I was
beginning this study. I also knew that I had chosen collaborative
ethnography and feminist methodology that required participation by both me
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and by the research participants in the research process. Therefore, it should
have come as no surprise that this research would have an impact on both the
participants and me; yet it did surprise me. Perhaps the surprise was that the
research not only affected me and the participants on a cognitive level, but
also on a deeply personal level.
Frank’s Hopes and This Research
In the following passage, Frank talks about how his hopes of
expressing himself through writing a book were affected by my dissertation
research.
Well, uh, you know, just look what it’s done with the research we’re
having together. I’ve gotten some things out of myself, out of my
system, that I never thought possible. And it might be just as good or
even better than the book I could write. Or, at least it could be the
best introduction to my book. And I don’t even need to have it
published. It’s going to be in front of the whole class or an instructor.
It’s gonna be in front of some knowledge of somebody that’s gonna
have an impact on them, and not just as an instructor, not just some
way for you to get a grade. She’s learning, you’re learning. Uh, the,
the, uh students who might look at the presentation get something out
of it, and that, that means a lot to me, even though it might, even
though like I said, we’re all sinners and we’re all self-concepted, you
know. (Frank Interview 3-15-05).
If Frank hadn’t told me about these feelings so explicitly, I never would have
guessed that my research affected him in that way. This research had a
different impact on each participant’s hopes.
Demetrius’ Hopes and This Research
Though Demetrius wasn’t as explicit as Frank about how this research
affected him, it seemed that he enjoyed the aspect of helping with research
and having a project of which he could be part. He told me the first time I
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met with him to go through the informed consent that he was looking forward
to helping me complete my research (Field Note 3-8-05). I realized though,
as I was constructing this manuscript, that I hadn’t asked him directly about
how this research might have affected his hopes. Since I said I would ask the
participants “why they climbed the wall to get to the balcony,” I called him
and asked him if doing this research had any effect on his hopes. He said that
telling me about Thomas Edison and his success after so many failures,
reinforced the possibility of achieving his own hope and “made it stronger”
(Demetrius Phone Conversation 3-24-05). He said that prior to our
interviews, he hadn’t thought about Thomas Edison for some time, but
talking about him gave Demetrius more hope. He also said that participating
in this research and helping me with my dissertation helped him feel more
like he could achieve something too in his own work (Demetrius Phone
Conversation 3-24-05). So the relational and reciprocal nature of hope, even
talking about hope and sharing stories of hope, had an effect on Demetrius
and his hopes as well.
Lloyd’s Hopes and This Research
For Lloyd, the process of this research had an impact on his hopes on
a very practical level. He often asked me for assistance with his hopes – such
as advice on whether he could become wealthy through gambling (Lloyd
Interview 7-18-05) or if I could help him get a cell phone to facilitate his
painting business (Lloyd Interview 3-10-05). He also asked me to help him
contact a man for whom he had done painting before to see if he could do
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more painting for him (5-4-05). So he saw this research project, and me as
the researcher as an aid to achieving his hopes.
My Hopes and This Research
At one point during the course of my interviews with the three
participants, I was experiencing a lot of stress and turmoil in my own life. I
was having a difficult time following through with the research process. I
had an interview scheduled with Frank, which I felt I needed to do to stay on
track with the process and to respect Frank’s time and involvement in the
research. I went to the interview and found that Frank was doing better with
some struggles he had been having, but he was also wondering if he was
alone in his struggles. He specifically asked me if I had any experiences of
difficulties like he was describing. At first I was thinking about how I should
respond as “the researcher” in some objective fashion. Then I decided that
the most important thing at that moment, whether I was wearing my
“researcher” hat or not, was to act with integrity as a human being – to be
“real” and not just something that I imagined a “researcher” might be.
This dilemma between the need to fill a perceived role as a researcher
and the need to be authentic in research relationships is not at all uncommon
in qualitative research. It reflects recent discussions about subjectivity in
research (Stoeltje et al., 1999; Foltz & Griffin, 1996; Richardson, 1992;
Frank, 1997; Segall, 2001; Lawlor & Mattingly, 2001). Lawlor and
Mattingly (2001) reflected on this issue as qualitative researchers in
relationship to the African-American children with disabilities/illnesses they
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were studying, and in relationship to the children’s families. They described
the importance of building authentic relationships as human beings, while
navigating their role as researchers. Foltz and Griffin (1996) wrote about
their discomfort in revealing too much about their personal experiences in
studying a coven of Dianic Witches – a feminist religious group that
professes to be an agent of empowerment and change. Even though they
found themselves changed by the experience of conducting this research, they
felt vulnerable as “junior faculty” to revealing the ways in which they had
cried together with the participants and ritually and humanly bonded with the
participants. Frank (1997), in her work on reflexivity in qualitative research,
described the importance of being receptive to and responding to “feelings
and intuitions that arise through the subtle dynamics of interpersonal relations
(p. 85).”
Going back to my dilemma about how I should respond to my
research participant Frank’s question about whether I had ever had times of
despair, I felt that the authentic response was to share some of my own
experience and feelings of hope and despair. That is not to say that I felt I
was able to act in whatever way I chose as long as it had integrity. I
discovered that sometimes the ethics of being a qualitative researcher require
being a “real” human being able to respond as a person who has also had to
cope with the difficult issues of life. What follows in the passage below is
the interaction between Frank and me in regards to this question.
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F: Have you ever felt like, oh God I feel like filth now, this hasn’t
happened, this hasn’t worked out and that hasn’t worked out, now
instead of feeling like I’m thriving on this, it’s like filth now. Have
you ever felt that way?
S: I think we’ve all felt that way before, sure. You know I think
there’s, that’s what I was saying, you know, and I, I don’t, you know,
you should read the Victor Frankl book, but you know, talk to more
people cuz I think it’s, you know, it’s a common thing, I, you know
sometimes I feel like things are going so well. It’s just incredible, you
know, and, and how can I, how can things, how can I deserve for
things to go so well? And how can things be so good for me? And
then I don’t know why, and, and it’s not that things change that
drastically, but, sometimes stuff happens, and you know, you get
kinda down. And all of a sudden it’s, you feel totally different, you
know, and you think why is it so hard? Why do I have it so hard, and
why isn’t it so hard for everybody else? But I think it’s uh, the, nature
of life, maybe, you know.
F: So what I can pick up from this, again, one, once again, is that I’m
not alone, in any way.
S: Um, not as far as I can tell, in my experience of people I’ve talked
to. Don’t you think people…
F: Well sometimes I wanna, I, it’s good to hear it.
S: Mm. Yeah. I agree.
F: So, the answer is yes?
S: I, uh, yeah, yeah of course, of course I’ve felt that way before, and
I think you’re right, I think it is good to hear that we’re, we’re not
alone, I think that, you know, we’re all looking for those points of
commonality and connection. (Frank Interview 9-13-05)
During this exchange, I think we both learned something. Frank learned that
most of us are not all that different in our difficulties. I learned to find my
space of being authentic within the research process. This experience also
reinforced for me how important this research topic is to me and how we can
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all learn from each other. This can be seen in the rest of the exchange that
follows:
F: And mine is not, by far not the worst case or anything like that.
S: Read Victor Frankl. You know, I mean you’re a thoughtful guy,
and you’re a sensitive guy and you think about things, you know,
really hard things and, and it’s not easy and sometimes, you know,
you struggle, but maybe that’s part of it. And then you come up with
really nice things like this [the following reference is to something
Frank had written and shown me during this interview], you know,
what better place than here with me, what better time than now, we
have to “accept happiness” and “treat joy as unnecessary
expec—anticipations” and go for the joy anyway. “Treat life as if it’s
an incurable addiction.” That’s pretty cool. …And I guess you know,
that’s probably uh, part of what attracted me to this research, you
know, this topic is … you know, I know I’ve had struggles in my life
and felt hopeless and wondered—
F: Like things were getting worse and worse and worse—
S: Oh yeah of course.
F: And you’re dragging everyone down with you.
S: Sure. Or if you’re not dragging everyone down with you, you know
maybe, it would be, people would have it better if you weren’t around
in some way or something, but, but you know, and, and, and then, you
know, and then I, you know, I’ve worked in mental health, so I’ve
seen other people’s struggles. And so I guess that’s part of what I
wanted to do was, to think about, in the midst of those struggles, you
know, how, how do we find hope? In, in our daily lives, you know,
what keeps us going? And, and it seems, it seems to me like we do
that, because at least most of us, most of us keep going, and even in,
even when things are hard, you know even, you know, when people
have depression, or you know, schizophrenia or whatever they have,
people keep going. So we find ways to do that, to create hope, and so
that was my idea, you know, to, to look at that more, think more about
that, and talk to people, and see what their experience was.
F: Now certainly this could be a breakthrough for me. Uh, looking at
it differently in different ways could be a breakthrough, talking to my
psychiatrist could be a breakthrough. (Frank Interview 9-13-05)
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In the preceding passage by sharing hope, and stories about hopes,
hope was nurtured for both Frank and me. So, hope was manifested in the
process of discussing hope during the research process. I went into the
preceding interview with my own sense of despondency and came away
feeling hopeful, just by sharing hope with Frank. Additionally, in one other
incident, as I was writing this manuscript for my dissertation, I again found
myself feeling doubtful and despairing about my ability to finish. One day as
I was sitting and thinking these dark thoughts, it occurred to me that it was
ironic to feel hopeless as I was writing a dissertation on hope. Soon
thereafter, as I again immersed myself in the stories of these three men’s
hopes and the literature on hope, I found my hopes renewed. Just by reading
how hopes had allowed these three men to move forward and by reading
stories of the power of other people’s hopes, I was able to feel hopeful again
and return to completing this manuscript.
As was seen in the preceding section, the three research participants
also experienced hope in the research process. It seems only fitting that
examining hope is not something that can be done in the abstract, it must be
experienced to truly understand its transformative power. As Shade (2001)
wrote, when stories of hope are shared between people, hope is nurtured for
all involved.
In the next section I will look more closely at the three participants’
hopes.
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Participants’ Hopes
Each of the three research participants in this project taught me
something about hope. They shared many aspects of hope and views on
hope, yet each one also had a little different something to add to the
discussion of hope. I will begin by describing how each of the three men
approached hope as a process. Next, I will look at how their hopes were
shaped by significant relationships and/or role models. Then I will discuss
how each man’s hopes were related to his religious views and practices.
How each participant’s hopes were related to occupations will be the next
section. Finally, I will look at each man’s views on hope and their responses
to critics of their hopes.
Hope as a Process
Each of the three participants in this study had hopes, and each
encountered obstacles to attaining their hopes. When they encountered
obstacles, each of them found ways to reconfigure their hopes or bypass the
obstacles, or both in a process of hoping. In this next section, I will look
more closely at the process of hoping for each of the three research
participants. I will describe their hopes and how they were able to make
adjustments when they encountered obstacles while pursuing their hopes.
Since some of their most important hopes were related to work, much of this
analysis will be in the context of their hopes about the occupation of work.
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Demetrius’ Process of Hoping: The Scientific Method
Demetrius primary hopes were to have his own exporting business
and do work related to healthcare. This led to his hope of running a business
that would export healthcare equipment to Australia, where he read there was
a growing market. Pursuing this hope involved a process for Demetrius. Not
only was there a process in his hoping, he even described it to me. It was
similar to finding a way to overcome obstacles through finding a way around
them or “waypower,” described in Snyder’s (1994) theory of hope. Though
Demetrius referred to his process of hoping as the scientific method, it
involved the same concept of hoping and then moving forward; and as
obstacles are encountered, trying to find a way around them.
S: Do you feel like you kind of learned what was possible as you went
along, did, did you get more information about, you know, what
might be possible to do, or not possible?
D: Oh well I used the uh, scientific method, that I learned in
Washington, D.C. in middle school. Junior high school. It’s basically,
you find, you define the problem, then you gather data, information
on the problem, then you formulate a hypothesis, a theory, then you
test the theory, and based on that new information that you get from
testing the theory, you can redefine the problem, or use that data
information to solve the problem. (Demetrius Interview 5-9-05)
Important hopes for Demetrius were having his own exporting
company, getting a home, getting married and having a family. He had a
particular order for these hopes he was working on:
My priorities are set in which, first comes the income or the job with
the income, and then comes the relationship, as far as having a
girlfriend and wife, then comes…um…the apartment or house, and
then the children. So I usually keep it in that order. (Demetrius
Interview 3-14-05).
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Since the income and job were the first priority, that is what
Demetrius spent a lot of time discussing. He didn’t just want any job though;
like many people, he hoped for meaningful work. For Demetrius, finding the
kind of meaningful work he hoped to pursue was part of a process that was
central to his life story. First he described his early hopes in high school to
become a physician:
The high school I went to didn’t have a physician program, or
physician club, to gear students into that field, so I wasn’t aware of
certain high GPA was supposed to be maintained, and a certain score
on SAT was supposed to be maintained. So that was, I didn’t find
that out until my senior year. By that time, you know, it was kind of
late. So I said well, I’ll have to do the second best thing, what other
choices do I have?…I really didn’t know what I wanted, but I knew
that, um, it was going to be close to the healthcare industry. And so, I
said well, to myself, if I’m not gonna be a medical doctor, maybe I’ll
be a corporate lawyer. So, so, when I went to the university, I was
studying business law. (Demetrius Interview 4-24-05)
So, his first hope of becoming a physician met with obstacles in the
necessary preparation he should have done in high-school. He encountered
obstacles so he revisited his hopes and re-envisioned them. Perhaps he
wouldn’t become a physician, but he would work in healthcare as a corporate
lawyer. Going to college to become a corporate lawyer did not go exactly
according to plans, and more revisions were necessary.
So I was going to the university part-time and so I was trying to get
into the business school. Meanwhile, I was attending the clubs, like
the finance club, and the marketing club, and um, I went to, um, a
round table discussion where these millionaires are sitting around
these tables, and um, they were trying to explain the stock market and
investments to me, and so um, after four years of going part-time at
the university, um, I looked at my requirements for the military
service. I had, I had, duty to myself and our country to serve in our
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military, and my age was increasing so I had to join the Air Force.
And I just wanted to join for 4 years. End up serving five years. And
so um, when I went to England, it brought to my attention that it
doesn’t make a difference what school you graduate from as long as
you graduate from a school. So I said well, I’ll, I’ll finish up where I
left off, at the state college where I first got accepted. And so I, I went
back to the state college, got my degree in business administration.
(Demetrius Interview 4-24-05).
Demetrius original hopes of becoming a physician became hopes of
going into corporate law, which finally became the fulfilled hopes of
majoring in business administration. All the while, Demetrius never lost his
original hope of staying close to the medical field. These same hopes of
being involved in the medical field continued to evolve in the process of
living, as Demetrius worked for a period of time with friends in an importing
business buying furniture from Taiwan and reselling it. When his friends left
the business, Demetrius decided to change the importing company to an
exporting company, trying to export medical equipment. “Since we we’re
doing exporting, um something like hospital administration, it’s medical
administration, it’s um, selling medical products, medical equipment supplies
(Demetrius Interview 5-9-05).
Demetrius’ goal was to find a way to make a living running a
company exporting medical equipment to Australia. I asked Demetrius what
he would do if he couldn’t get a job that paid for him to do what he wanted to
do, but someone offered him a volunteer position doing something related.
Demetrius ideas demonstrated the process of hoping by taking advantage of
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the volunteer opportunity but trying to see if it could be turned into
something that paid him.
S: What if you um, what if you found a, uh, way to do it, but it was
like, through a volunteer agency or something, that said we can’t pay
you, but we can get you involved in doing this?
D: I would probably take it [Laughs], because it would be something
that I like to do and I get e—I would get experience doing it, and then
I would try to get it, I would try to get paid doing it after about so
many months.
Having looked at how Demetrius used a process of hoping to
overcome obstacles he encountered while pursuing his hopes, next I will
describe Frank’s process of hoping.
Frank’s Process of Hoping: “So then I….”
Frank also described several hopes to me, but similar to Demetrius,
work seemed to be one of his most important hopes. With Frank, the hope
for meaningful work was definitely not a linear path but involved a process of
decision making about the next direction in which to move towards a career
when he encountered obstacles – “so then I….” He explained to me some of
his process of hopes for meaningful work beginning with finding the right
college.
I graduated high-school in like ’86. I went to a private university for
one year. I didn’t like it there. It wasn’t a good experience. I found
out I could go to a public university right away and I should have.
But then I did – after that first year I went to the public university.
(Frank Interview 3-8-05)
After finding himself at the public university, he began trying to
decide on a major.
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Anyway when I went to the public university, um…I had some rough
times. First I was trying to uh, do communications which I thought
was good. I learned at the private university I could do that. But then
when I went to the public university, I realized that I have to look for
the jobs in the market – not just something that was there but
something that the market demands. So then I started going towards
uh, I tried to do art, but my art wasn’t like something that I had a lot
of credit like I could be an animator – I couldn’t do that. I couldn’t be
like Picasso or anything like that. So, then I went towards the area of
accounting. When I had accounting, I uh, had a rough time. I got to
cost accounting and then I started quitting. (Frank Interview 3-8-05)
So Frank’s hope of a meaningful career involved a process of deciding
on a major. He decided that his first choice of communications might not be a
field with enough demand. He changed from communications to art but didn’t
feel he had enough talent to work as an artist. Next, he pursued accounting as
a degree but found that some of the classes were really difficult. He felt
maybe he needed help in figuring out this career path so he went to the career
counselor.
Then I went to see my counselor again and he recommended Public
Administration, because I could transfer some of the business courses
into that, uh, and go into the financial management concentration. So
I did that, uh, I was uh, you know, uh, very optimistic. I had no idea
what was ahead of me that was going to be obstacles, but not knowing
that I was very optimistic. When I graduated in ’93, I uh, wanted to
pursue my master’s and then I learned that I needed experience. So
that was a setback. But I couldn’t get my master’s because it was too
difficult. And that’s when I stopped going to school for awhile.
(Frank Interview 3-8-05)
Thus Frank’s hopes turned to pursuing a degree in public
administration, which he was able to complete. He decided however, that he
needed to get his master’s degree to move forward towards this hope of a
career in Public Administration. Frank started working on his Master’s but
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found that the course work was too difficult, so he stopped going to school.
At this point, Frank turned his hopes towards finding some kind of work. He
described a series of brief jobs that didn’t work out which finally led him to
return to school.
Um…then I decided that I’d take computer application systems at a
technical school….And so I got frustrated with that after awhile and
then I quit. Then, um, I couldn’t get my certificate. But then, I
realized that I could get, get uh, maybe I could get, take another
elective instead of that which was internet. And I said well, how hard
could that be (kind of disbelieving)? But, the instructor made it hard.
So then I decided to take it from another instructor but that instructor,
who uh, who I liked, which I liked, who I liked, um, decided on other
plans so I ended up with the same one during summer school. And
then I quit for real. So I wasn’t able to get my certificate in computer
application systems. Then I decided some years later, or I don’t know
how long afterwards, to take up computer, uh, repair. And, uh,
apparently I needed experience in that area which I didn’t have. But I
didn’t get the full-blown computer repair, uh, certificate. I got a
computer support system, support specialist certificate, because I
wasn’t able to get the basics like everyone else…. I couldn’t even find
anything in computer support specialist (Frank Interview 3-8-05).
After completing the certificate in computer support, Frank began to work
with ETE. He worked with them for several years before becoming
employed.
So then, one thing led to another and I decided I’d end up in the retail,
which I’m doing now, at uh, as a courtesy clerk, at uh, a grocery store,
cause uh, after all that schoolwork that’s all I ended up doing. But the
good thing is, that, if I keep at it, and I asked this from them, they
could use my Public Administration as management degree, so that I
could, once I move up the ladder a little bit, I could do, be manager. I
asked them and they said it would be alright. (Frank Interview 3-8-
05).
Thus Frank’s initial hopes began with communication and arts; then they
evolved into public administration and finally computers. Frank never really
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described a hope to go into retail; however, when ETE was able to find him
work as a courtesy clerk at a grocery store, he took the job. The interesting
thing was that after taking the job, Frank was able to re-process his hopes to
incorporate some of his previous hopes for finance and administration by
thinking about working his way up the ladder into management at the grocery
store. This seems to illustrate the process in which people engage in
changing their hopes as they move through life’s changing circumstances
(Shade, 2001, Snyder, 1994).
Lloyd’s Process of Hoping: “I wanna be rich”
Lloyd also had hopes in similar categories to Demetrius and Frank.
He hoped for work, a home, and a wife and family. His hopes for work were
important but were usually the means to his most prominent goal of
becoming a wealthy businessman. Since the hopes for employment were part
of his hope of becoming wealthy, I will begin by discussing Lloyd’s hopes
for employment.
When I met Lloyd, he had already spent quite a bit of his life doing
house painting. He explained to me how he got interested in painting. “My
dad was an engineer, and uh, painting, he had his own general contractors
that worked under him, and, and he, uh, my dad helped me get into the paint
business” (Lloyd Interview 4-28-05). He talked about other hopes for
employment that he had pursued along the way, and how his hopes had
changed:
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Yes, I went to college and didn’t quite, uh make it…. I was studying,
uh to be an engineer. I studied air-conditioning. I tried, uh, auto-
body, electrical and couldn’t do either one because it was very
complicated.
(Lloyd Interview 3-10-05)
Lloyd also talked about how his hopes for wealth through work
changed as he encountered obstacles in the process of hoping. Though he had
done some painting, he had hopes of becoming a wealthy CEO: “I wanna be
rich, be prosperous and I wanna be, be a big tycoon, like, like the big giants
are, like General Motors, stuff like that” (Lloyd Interview 7-7-05). Though
his hope to become a wealthy businessman remained consistent, he continued
to change his hope for the type of business. When I asked him in another
interview about his hopes he described them as “being a CEO and having a
big corporation, a painting company” (Lloyd Interview 5-4-05). Lloyd also
talked about other hopes for jobs and work that might pay well. “Uh, I have
a goal when to be a CEO, being uh, invent a company like Larry Miller’s Sit
N Sleep” (Lloyd Interview 5-4-05). If he stayed with the painting business,
he had some ideas about how he could grow his business:
L: I’m thinking about, I want to get my general contractor’s license
soon.
S: What do you have to do to do that?
L: Take a big test and it costs like, several hundred dollars, according
to what my dad and my mom said.
S: Have you ever tried to do that before?
L: Yes, and uh, yes, that took the book uh, South State, um to get my
B1 contractor’s license, and there was a lot of stuff you had to know
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and everything. I’m not too good at calculus, that’s some of the things
you gotta know, math.
S: Did you take the test?
L: No.
S: You just studied for it.
L: Just kinda studied for it, with, with uh, John, my guy before Mark.
(Lloyd Interview 4-28-05).
Though Lloyd encountered difficulties in finishing a college degree, and in
studying for his contractors’ license, he continued to hope, and the process of
his hoping helped him find other pathways for his hope.
Despite the fact that many of Lloyd’s hopes centered on finding work,
the type of work he was seeking varied at times as he became aware of
different employment options that might make him wealthy. Thus, his hopes
about work were also in process as they served as means to his hope of being
wealthy. He was always interested in work that might bring him more
income than the work of painting, which he most often had done. This was
from an interview on 5-4-05 explaining his ability to get painting jobs, but his
desire to do something that would make him a wealthy businessman.
L: …Well they [painting jobs], they just pop up because I have a good
reputation of word of mouth and everything but I don’t have to handle
the paint business that, I would inherit, I would inherit the engineering
company of my uncle, rather do that than painting because it’s worth
millions, tens of millions of dollars.
S: Ok, so the painting to you is mainly a source of income—
L: Source of income, yeah.
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S: --And if you could do something else that made more you’d
rather—
L: Right, I rather run, have, my uncle’s company had a big aerospace,
he owned a big corporation himself. (Lloyd Interview 5-4-05)
So Lloyd, similarly to Demetrius and Frank, had hopes for working
that were in process. His primary hope was to become a wealthy
businessman, but his hopes for the type of employment evolved as he came
upon different possibilities. At times along the pathway to fulfilling his
hopes, just as Demetrius and Frank had done, he encountered obstacles –
difficult college classes or difficult math for licensing tests. Sometimes he
just encountered realities such as not inheriting his uncle’s company. As with
Demetrius and Frank, Lloyd was able to find alternative visions and
pathways that allowed him to pursue his hopes.
Summary of the Process of Hopes
Each of the three men who participated in this study had hopes that
were beyond their reach at times; or they encountered obstacles in the pursuit
of their hopes, yet they found ways to continue to move forward. When
someone realizes that the desires of his/her hoping are beyond reach at
present or the means are insufficient, the process of hoping allows for
reconfiguration of both ends and means (Shade, 2001) and finding ways
around obstacles (Snyder, 1994). This idea of hope as a process was evident
in the lives of the three participants in this study.
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The process of hope was a dynamic one for all three participants.
They did not quit or become despondent when they encountered obstacles.
They were able to navigate past the obstacles and continue to move forward
in their hopes. As the three participants in this study continued to move
forward in pursuit of their hopes, it was important for them to be able to
sustain their hopes. Significant relationships, and sometimes role models that
they had adopted, became important strategies for sustaining hopes in the
lives of these three men.
Next, I will describe these hope sustaining strategies in more detail.
Sustaining Hopes with Relationships and/or Role Models
When roadblocks are encountered in pursuit of hopes, hope sustaining
strategies can be vitally important. For each of these three men as they tried
to maintain their hopes, sometimes they were sustained through relationships,
and sometimes by looking to role models. Each of them had relationships
with people and/or significant institutions that they looked to for support.
Role models were people they looked to in deciding what might be possible.
In this section I will look at each of the three men’s hopes in relationships
and role models.
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Demetrius’ Hopes Sustained in Relationships and Role Models:
The Church, Businesspeople, and Thomas Edison
Demetrius had a few people who were supportive of his hopes, but he
found most of his support in his relationship to the church. “I don’t get any
encouragement, um, except my own, my own will, and the church, and lifting
weights (Demetrius Interview 5-9-05).” Though he found church to be
supportive, it wasn’t specific people at church so much as his relationship
with the church itself that was hope sustaining. The following passage was
Demetrius’ answer to how he kept his hopes alive:
Well, um…I guess well, I do a lot of prayer and go to church, and so
when I feel down, I feel like that well…why, why should…maybe I
should just give up hope or, or feel down, when I go to church, the
Greek Orthodox Church, it fills me up to say that you can do it, and
that other people have done it. (Demetrius Interview 3-14-05)
The few people who did believe in his hopes of running an exporting
business were people who shared the similar foundations about what might
be possible.
As far as the people who ask me about how to start their business, I
get a little positive incentive from them. Um…but there’s one client
that is very supportive. He’s got his degree in business and we
graduated at the same time at the public university, he’s got his own
business and we talk on the phone and I get encouragement from him.
And…he wants to be a millionaire, and he cleared a million dollars
not too long ago. And so I get an incentive from him to keep going,
but it’s not in exporting though, it’s just general business. So…that’s
about the only…emotional support that I have. (Demetrius Interview
3-14-05).
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Besides the church and a few supportive businesspeople who
supported Demetrius’ efforts to start his own export business, he had role
models that he looked to for hope. Demetrius had made it a practice to
research people who were successful. This practice of looking toward
successful role models for hope began when he was in high school. In this
interview, Demetrius related how he began this practice of studying role
models.
And so one of the projects we had in Physics was to write a book
report and so um, I decided to write one on a scientist. You know at
the time it was uh, Albert Einstein and so I got it, I went to the library,
got a paperback book on Albert Einstein, and I read it from cover to
cover, and I wrote, I was fascinated by him, and I wrote a um, a paper
on Einstein. So since then I, I became fascinated by scientists in the
world. And so Thomas Edison was the next, um, subject that I did
research on, read a book on Thomas Edison and his, his advancements
and his achievements, and so then I read one on um Booker T.
Washington and um, I became fascinated with how these people could
solve these complex problems. And so um, that was, at the time, I
wanted to be a scientist. This was in high school. So I went through
these different phases of what I wanted to be, like any other
youngster, and so um, well when I came across Thomas Edison, I
found out that this guy had 19,999 failures and one success. It was, it
was beyond comprehension almost. It was like, how somebody could
do that. (Demetrius Interview 4-25-05)
The struggles of Thomas Edison and his 19,999 failures before he had
success was a story Demetrius often recited as one of the things that gave him
hope when he became discouraged.
And then I look at Thomas Edison and…I use him as a role model
because Thomas Edison, I think it was Nineteen thousand, nine
hundred and ninety-nine failures and he came up with one success
called the Tungsten filament for the light bulb. And so I always think
about whenever I, I feel that, why should I go on, I always think, that
if he can do it, maybe I can do it too. So I just keep trying to be
persistent like Thomas Edison. (Demetrius Interview 3-14-05)
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Thomas Edison was Demetrius’ role model for persistence and
keeping on hoping. He also cited other role models as giving him hope in
other ways. Some of the role models he cited were people who were
successful in business. In the following passage, Demetrius is responding to
a question about whether he picks people he knows personally as role models
or people he has learned about.
Well, um, it’s usually people that I’ve read about. For instance, I had
to memorize the millionaires, the billionaires of the United States, of
basically the world, and they were Bill Gates, Rupert Murdoch,
Warren Buffet, Ted Turner, Howard Hughes, John D. Rockefeller,
Oprah Winfrey. And so, it was at that time that’s when the business, I
was, still, trying to get the best of the best that I could find that had
that mentor ability, on how did they accomplish these things? You
know, they were similar to scientists, but they were in the business
world. So they weren’t people that I, that I met personally, it was
people that I read about and um, studied.
(Demetrius Interview 4-25-05)
Thus, Demetrius found sustenance for his hopes in his relationship
with his church, in some other businesspeople, in the persistence and success
of Thomas Edison, and in the success of other businesspeople. Next, I will
describe relationships and role models that sustained Frank’s hopes.
Frank’s Hopes Sustained in Relationships and Role Models: Kim
[ETE Case Manager], Ordinary People He Met, Wayne Dyer, and
Joseph Campbell
Frank also found sustenance for his hopes in some significant
relationships and in role models he found in books that he read. Frank’s hope
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in relationships seemed to focus mostly on Kim, the social worker at ETE.
This was a significant relationship for Frank. Kim was someone Frank
enjoyed talking to about his ideas and hopes. She was someone that he
referred to often as the person to whom he would turn for advice and help
when issues arose.
F: Yeah Kim said that, you know, uh, when I was so fixated on, uh,
you know, chores, breaking down chores like uh, watering the lawn
and this and that and the other thing, all these different things I tried
to break down. And I did it anyway. But before I was doing all that,
before I was continually obsessing, she, she stopped me for a moment
and said, you know you’re the only one who’s creating all this.
S: Hm. So that had an impact on your thinking about…
F: Yeah. (Frank Interview 7-11-05)
He also referred to her as a kind of reference point whereby he and
others could judge his progress:
You can even ask, uh, Kim. Ever since I’ve worked there, I’ve
changed immeasurably, you know, from, the uh, person that speaks
off tangent in group, (um) to the clear speaker that I am now. My
psychiatrist sees it. My mother sees it. My father sees it. Uh…you
know, Kim sees it. (Frank Interview 3-8-05)
Additionally Frank discussed the fact that a role model for him could
be just an ordinary person he met who had some impact on his life.
Sometimes my role model is as simple as a customer who told me
today, uh, what did he tell me, he said something, like uh, what did he
say, “go get ‘em brother.” I may never see him again, but, you know,
uh, role, that’s the other thing, this uh book talks about, and maybe
somewhere else I’ve read too, that role models are not people who
have to be important. We are all emulating each other. We are all
role models of each other. (Frank Interview 3-15-05)
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Besides his relationship with Kim, and support from ordinary people,
the most important influence for hope that Frank discussed regularly was
from the books that he read. When Frank discussed the books that he read,
he often talked about how much they meant to him and what he had learned
from them. The authors themselves were something of role models; but in
addition, Frank discussed their writings in ways almost as if he had
relationships with them. Usually role models are people whose example we
follow in their actions and lives. These authors and their works were more
like role models for Frank as he read and re-read the books, and then tried to
practice what he learned from them.
Wayne Dyer was one of the authors Frank gave as an example of
learning something about hope and directing ourselves toward what we
desire.
It’s like this author of the book called “The Power of Intention” –
Wayne Dyer…. If we contemplate on the uh, the results that we
desire, they will come to us. All we have to do is contemplate on
them, and they will come to us…. Where he talks about how there
must be an invisible force beyond subatomic particles even, that
cannot be seen. And that’s called spirit. And spirit moves us by our
uh, willingness to contemplate on the results we desire and it will be
provided to us. But we can’t just sit there and say, I want to feel good
or something. We have to be optimistic about it. And then it comes.
(Frank Interview 3-15-05)
Interestingly, this intentional optimistic thinking about what we desire
that Frank described, sounds very similar to the possibility and desire used in
this research to define hope. When I asked Frank if there was any advice he
would give about hope to someone going through something similar to his
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own situation, Frank suggested referring people to Joseph Campbell in an
interview with Bill Moyers.
Uh, …look to someone like Joseph Campbell, you know, or Bill
Moyers, inter, uh, interview. Because he’s always so calm and, you
know, everything seems to go in the right direction, uh, for everyone
according to him. You know, pick up on what he has to say, his book
about the power of myth. Um, because the whole time that I was still
messed up and I wasn’t mature and whatever, I, I couldn’t, I uh, I
always saw him as a man, uh, that was always transcending
everything…. Uh, how he puts, puts things in perspective, like uh,
when he said that, when you go down the roads a little bit in your life,
and how you look at things, they all come together like there’s a
master dreamer, who dreams things and puts them together for you,
and uh, it becomes such a thing of beauty that you’re amazed, and so
on and so forth. I mean, uh, he put, he put it so well that even I
couldn’t put it that way…. And all of a sudden my mind kind of, my
mental illness became a little more calm, and I became, began to uh,
assert myself that even though things are not the way they used to be
when I was younger, that this is the way I have to think, even if it,
even if it’s not exactly that way, I have to keep trying to think like
that. (Frank Interview 3-15-05)
So, Frank found support for his hopes in his relationship with Kim, the case
manager at ETE. He also found sustenance for his hopes in a variety of role
models from Joseph Campbell to an ordinary person who was a customer
from his job at the grocery store. In the next section, I will examine Lloyd’s
hope sustaining relationships and role models.
Lloyd’s Hopes Sustained in Relationships and Role Models: Dad
and Brother Dan
Lloyd also found sustenance for his hopes in relationships and role
models. He spoke about a couple of relationships that were important to him
and his hopes. He sometimes talked about his father in relationship to his
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hopes. His father seemed to be someone whose advice he valued and who
was important to sustaining his hopes. I once asked Lloyd about what
supported his hopes and he responded “my dad helps me a lot in that” (Lloyd
Interview 4-28-05).
Lloyd’s hopes for his painting business were also born out of his
relationship with his father:
“My dad was an engineer, and uh, painting, he had his own general
contractors that worked under him, and, and he, uh, my dad helped
me get into the paint business” (Lloyd Interview 4-28-05).
Besides his dad, Lloyd also talked a lot about one of the pastors of
Trinity Church, Brother Dan, in the context of relationships and hopes. He
thought of him as a role model.
S: Do you um, …do you have people that are um, that you’ve ever
kind of looked up to as role models? People that you learn—
L: Yes, uh Pastor Brother Dan, the one at Trinity Church, one of the
pastors. (Lloyd Interview 4-28-05)
In one of our first interviews on 3-10-05, Lloyd talked about what
Brother Dan meant to him. He explained how his hopes for wealth were
related to Brother Dan’s ideas:
Oh sometimes, I don’t have that many jobs. That’s why, I learned
how to, have people help me out at the church. Brother Dan did that a
lot for many, many years and that’s why Dan is so blessed with all
kinds of property and everything, and he drives around in a 1981
Malibu car and he used to be the chief, well-known pastor over at
Trinity Church. He uh, now he’s into that. He’s also into uh,
miracles and Trinity Church is a Benny Hinn Church, they believe a
lot in Benny Hinn and miracles, things like that. (uh-huh). That’s
why I go there so, not only do I want to learn to be a good Christian
but I also want to become blessed and be an entrepreneur over there.
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Lloyd also talked about Brother Dan directly when asked about
something that made him feel more hopeful: “It’s uh, me and Pastor Brother
Dan at Trinity Church. Uh, and every time I feel more hopeful, I been, I’ve
known him for a long, long time” (Lloyd Interview 5-4-05). In the same
interview, I asked him if he ever had doubts about becoming successful as
they taught, or in other words if he sometimes lost hope in becoming wealthy
through his beliefs. He replied positively based on his relationship with the
pastors at the church. “The pastors at Calvary Chapel think it will happen if
you be a beam of God, God’s will” (Lloyd’s Interview 5-4-05). In addition
to Brother Dan’s influence on sustaining his hopes, he spoke about Brother
Dan in relationship to re-gaining hope.
S: What do you do when you lose hope to get hopeful again?
L: Call pastor at Trinity Church, pastor Brother Dan.
(Lloyd Interview 5-4-05)
Summary of Hopes in Relationships and Role Models
Thus, all three men found support and sustenance for their hopes in
relationships with a few important people. Relationships and interaction with
others are important aspects of constructing and pursuing hopes and these
ideas are found in hope literature (Shade, 2001; Dufault & Martocchio, 1985;
& Farran et al., 1995). Hope was not simply something that lived inside
these three men, or just within their activities. It was nurtured within their
relationships. When they faced doubts about their abilities to remain hopeful,
they would also look to role models who were successful. This idea of
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looking to role models for instilling hope is also found in the literature. In
their qualitative research about drug abuse recovery Sowards, O’Boyle, and
Weissman (2006) described having a role model that is further along in drug
abuse recovery as being critical to instilling hope for women in recovery.
In the next session, I will look at another major influence on these
three men’s hopes – religion.
Hopes and Religion
All three of the participants in this study talked about their hopes in
relationship to religion. Each of them saw religion’s influence on their hopes
in a little different way. Demetrius talked about getting support for his hopes
from the people at the church and how his religious views and prayers gave
direction to his hopes and aspirations. Frank talked about hope for having his
struggles end through his religious views about the end of time and having
God helping him now. Lloyd’s views on hope and religion were more
similar to Demetrius’. Instead of the church itself, though, he saw the pastors
and their teachings as giving shape to his hopes.
Demetrius’ Hopes in Religion: The Greek Orthodox Church and
Luke as a Medical Doctor
As Demetrius said when introducing himself, his church and religion
– specifically the Greek Orthodox Church - were central to how he defined
himself: “What makes Demetrius tick is basically, um, religion. I’m a Greek
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Orthodox (Demetrius Interview 3-14-05).” He also discussed the church and
his religious beliefs as being important in relation to his hopes. For
Demetrius, the very shape and direction his hopes had taken were influenced
by his religious beliefs. He explained the connection between his desire to
export medical equipment and his following the example of Luke, Jesus’
disciple, who was also a medical doctor.
I was following the, uh, evangelist named Luke. And what Luke was,
Luke was a disciple of Jesus Christ and he was a medical doctor. And
so um, I’m sure he, he had something to do with Jesus healing people.
And um, now Jesus, he was, he was different. He wasn’t a medical
doctor, but he could heal people by touching them. And um, the
Greek culture goes back, in terms of medicine, a couple thousand
years. It was, it basically received its information from Egypt. Egypt
and Greece would work really closely, tight-knit, and um, at one point
in time in history, you wanted to become a doctor, you would study
under the Greek system, you would go to Athens, or Constantinople,
to their medical schools, to become a medical doctor. So they have a
very strong foundation in medicine. And um, that influenced me to do
the research for, ex- medical equipment and supplies, export medical
equipment and supplies to third-world countries.
(Demetrius Interview 5-9-05)
In addition to having his hopes reinforced and sustained through his
church, Demetrius explained how he regained hope through the church and
prayer:
Well, um…I guess well, I do a lot of prayer and go to church, and so
when I feel down, I feel like that well…why, why should…maybe I
should just give up hope or, or feel down, when I go to church, the
Greek Orthodox Church, it fills me up to say that you can do it, and
that other people have done it, and um…it, it keeps me, since I have
faith in God, it keeps me to have faith in the business, like when the
church, that’s basically where it comes from.
(Demetrius Interview 3-14-05)
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Thus, Demetrius found the Greek Orthodox Church and prayer to be
hope inspiring. He also chose Jesus’ disciple, Luke – the medical doctor, as
an example of how medical practice is important. His hopes to work in
medicine were nurtured by using the biblical figure of Luke as an example to
follow. In the next section, I will describe Frank’s hopes in relationship to
religion.
Frank’s Hopes in Religion: Jesus’ Second Coming and
God Helping Us
Frank also related his hopes to religion. For Frank though, he talked
about his hopes for the “rapture” or end times according to Christianity, in
relationship to not having to struggle anymore. Though Frank was an active
agent of his own recovery in seeking out and reading books that he found
helpful, he sometimes became discouraged by the challenge of trying to
create a meaningful life. These moments of frustration must have made the
idea of an end to all difficulties sound very appealing.
F: Since Palestine is making progress with Israel, we could be looking
towards the rapture very soon, according to one evangelist. And
that’s one, that’s very, and I can’t wait until things start moving ahead
in that direction quicklier, quicker, I mean.
S: Why would you want to move ahead quickly in that direction?
F: Because, that’s the key. ….And the final war will be all the
nations coming against Jerusalem, but before then, all those people
who are just are going to be raptured so they don’t have to go through
the seven-year tribulation.
S: Now is that something you are looking forward to?
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F: Yeah, I’m not sure, you know, you can’t be sure about these things
but, you know, but it’s better to think that it’s going to happen and
have some kind of hope than nothing at all. Cause you know, in this
lifetime I’m going to have mental illness, I’m going to have old age
and these kinds of things, but when I look towards the future and the
possibilities, it all has to end somehow. (Frank Interview 3-8-05)
Besides looking forward to Jesus’ Second Coming, Frank believed
that God was involved with his life in the here and now. He described how
sometimes things happen that could be written off as coincidences but are
really indications that God is at work. In the following passages, he discusses
some of these seeming coincidences.
Like you said, your friend got a video camera, and you can help, help
me, for Christmas or whatever, and you have a contact with her and
that helps you help me. It’s like God helping us, in a way, or me or
you or both of us, in some sense. Or when was drinking a soda, a, a
drink, with my pastor when we were at Starbucks, my tipping over
my drink, had something to do with the discussion we were having. It
all seems like, uh, everything goes in hand, hand-in-hand, when God
helps you…. Well, you know, to, to make it short and brief, there are
just so many examples of how coincidences indicate God is working
in my life. There just is, it’s just not possible to go through all of
them. It would have to take us another session, and I’d probably have
to take a memory pill. (Frank Interview 3-29-05)
Frank also talked about the fact that we will all die some day so that hopes
are not the final word. God is the final authority on what will happen to us.
“But when we die, no, no one except God himself can, can say what happens,
you know how, how it carries on afterwards” (Frank Interview 7-11-05).
Thus Frank found hope in his religious beliefs that all the difficulties
would end one day with the “rapture.” He also believed that God was at
work in his life and this was demonstrated through seeming coincidences.
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This work of God helped him move forward in his life towards his
goals/hopes. Next, I will analyze Lloyd’s hopes in relation to religion.
Lloyd’s Hopes in Religion: Trinity Church, Brother Dan, and
Crusades
Lloyd also had hopes that were related to religion. He often described his
hopes of becoming a wealthy businessperson. He related his personal hopes
for wealth to his church’s teachings on becoming wealthy. His hopes were
that if he followed the teachings of his church, and of some religious teachers
that his church recommended, he would become rich. He described the
teachings of Trinity Church:
Cuz, I like going there because I can be a, a Christian, serve God, and
be very very, extremely wealthy and be a big multi-type big
millionaire, like they preach over at Trinity church, how to be real
prosperous and everything. If you do God’s will He’ll bless you, He’ll
throw out the blessings of heaven’s window and you’ll become real
wealthy and have more than you can imagine. Jesus Christ made
himself poor so become, we could become entrepreneurs, and become
CEO’s. Stuff like that. That’s why he died. That’s what they preach,
they teach at Trinity Church. (Lloyd Interview 5-4-05).
In addition to the teachings of his church, Lloyd found support for his
hopes of becoming wealthy through the crusades and teachings of some
prominent religious leaders. He described how these religious teachings
supported his hopes:
L: And I like to go to, Benny Hinn’s crusade because they’re very
uplifting, and the gifts of the Holy Spirit and everything. I saw Benny
Hinn twice at a crusade, in the past. He was real good. So was
Kenneth Hagen, so was Oral Roberts, and T. J. Hicks, and people like
that. I don’t know about Jim Jones, I haven’t been to that one yet.
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S: What do you find helpful about what they say?
L: That, uh, if you follow God, and, and, let God do it, he’ll make me
very wealthy and prosperous. Have my business prosper like crazy.
(Lloyd Interview 3-10-05)
Lloyd not only found support through religion for his hopes of
becoming wealthy, but was also told that through this church was the only
way to achieve these hopes. He even felt a threat of losing his ability to
achieve his hopes of wealth if he attended another church.
I wanna be wealthy because the Pastor, Frank Smith at Trinity
Church, says “Jesus Christ wants us all be wealthy, to be prosperous,
to be entrepreneurs, and stuff. You just follow God and do it his
way.” If you go to another church and do it your way and you’re
selfish, you’ll be around minimum wage, $10 an hour for a long time.
I don’t want that to happen. (Lloyd Interview 3-10-05)
Religion was an important force in Lloyd’s hopes. It nurtured his
hopes through the teachings of his church and its pastors. He found further
support through the crusades of prominent religious leaders. He particularly
found support for his hopes of wealth at Trinity Church and feared he might
lose the opportunity to fulfill his hopes for wealth if he attended another
church.
Summary of Hopes and Religion
Each of these three men found support for their hopes in religion,
though in different ways. Demetrius found support from the church and from
his religious beliefs in general. Frank found support in the fact that one day,
with the second coming of Christ, his struggles would end. Lloyd found
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support in his church’s teachings on wealth, his pastors, and the books and
evangelists who shared these views on wealth. Yet, all three of these men
shared a view that religion was important in their hopes.
Support for the idea of hopes being influenced by religious beliefs and
practices can also be found in the literature. In Snyder’s (1994) research on
hope from a psychological perspective, he found that people who pray have
more hope. Similarly, Davis (2005) found that there was a significant
positive correlation between hope and spirituality in older adults. Benzein,
Norberg, and Saveman (1998) found that a group of Pentecostalists reported
that their hope was strengthened by reading the Bible and praying. Religious
practices and beliefs do sustain and increase hopes.
In the section that follows, I will look more at how each man’s hopes
were related to his engagement in occupations, particularly leisure.
Hopes Related to Occupations
There were several types of relationships between hopes and
occupations that came from the three participants in this study. First,
occupational pursuits were shaped by hopes. The hopes of each participant
were lived out in their daily lives and occupations as they pursued their
hopes. Second, hopes were shaped by, and often strengthened by,
occupational pursuits. As the participants engaged in occupations hopes were
strengthened by successes that helped the participants make progress towards
attaining a hoped-for result. Sometimes, hopes had to be adjusted when
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engaging in occupations didn’t support the hopes. Finally, occupations
helped sustain hopes by providing an outlet for coping with frustrations, and
by providing arenas for success that enhanced feelings of possibility in other
areas. The following data illustrates these relationships between hope and
occupation.
Demetrius’ Hopes Related to Occupations
As stated previously, Demetrius’ biggest hope was to have his own
exporting business. This hope for running his own exporting business shaped
his pursuit of occupations as he spent time doing research for starting his
company.
Um, basically the things I enjoy doing most would be, the research for
my export company. Um, it’s a passion that I have, and it I guess it
mighta came from my background of getting a degree in business
administration, and that’s basically, what, what I’ve uh, what my
goals in life has been to uh, have my, to be the boss and have my own
export business. (Demetrius Interview 3-14-05)
In order to find out more about having a successful business,
Demetrius researched successful businessmen. As he engaged in the
occupation of researching other businessmen who were successful, he found
support for his own hopes of being a successful businessman. In the
following passage he described how he learned to persevere and remain
hopeful by reading about how other business leaders were able to turn failure
in business into success.
I look at people like Donald Trump, who’s been bankrupt three times
and he still keeps going. And so, so it gives me an inspiration to see
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that there’s a lot of people in business who have junior high school
educations that are doing real good, but they weren’t always
successful. There were times when a business didn’t make any
money, there are times when a business made a lot of money; And so,
from them I learned to um, take the bad with the good, and constantly
hope that the business will make a lot of money, but you’re test, the
person is tested once not making any money, a lot of people just give
up. Say well, this business is not making any money so I’ll just go and
get a job, or I’ll just go and do something else. But, in looking at the
role models of Donald Trump and Rupert Murdoch, how they
struggle, during their, during times in business, and then they make a
recovery. That really influenced me… to keep hope. (Demetrius
Interview 5-9-05)
Demetrius’ hope for having an exporting business was born out of his
previous engagement in the occupation of working in importing. After
operating a successful importing business with some partners for a while, the
partners decided to leave the business. After his partners left, Demetrius
decided to transform the import company into an export company.
Yes. Well, um…the President, when we re-tooled the company to do,
go from importing to exporting, he bailed on us. He basically said,
that well he’s gonna become a minister and he’s gonna work in the
community, so he’s not gonna be president anymore. And the other
business partner, he, he said that well, he doesn’t want to do any
exporting ‘cause it was too hard and he got his degree from Cal State
in business administration. So I took the responsibility to re-tool the
company and to go up, and be President/CEO.
(Demetrius Interview 3-4-05)
Although Demetrius had a specific hope to run his own exporting business,
he was still working on this. He told me once that he had been working on
this goal for “about three years, three or four years now” (Demetrius
Interview 3-14-05).
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In another interview, Demetrius described how his hope was
increased by success in the occupation of researching his idea for an
exporting company.
Well if I’m working on a project like this thing in Australia [exporting
to Australia] and, I get an idea, say well let me check the computer,
and the idea doesn’t produce anything, then you feel silly, say oh
well, that just didn’t, that was a waste, a wasted day. So then, I go
home and say “What did I do wrong? How can I make it better?” And
I try to come up with another idea. And sometimes it might take two
or three days, trying to put forward an idea, then I get an idea and I
come back with the computer. And so um, then sometimes the idea
really pays off, and I’m really happy, I have a lot of hope. (Demetrius
Interview 5-9-05)
Demetrius’ hopes of running his own exporting company were also
enhanced by other non-business occupations. One of his other occupations
was studying Spanish and Japanese. I asked him how studying these
languages was related to his hopes of having his own exporting business and
this was his reply:
The skills are helpful in business to do international business, and sell
products made in United States to advance cultures and countries…
(Demetrius Interview 3-14-05)
One of the other occupations in which Demetrius engaged was
bodybuilding. The connection between the occupation of bodybuilding and
having a successful exporting company are not immediately obvious. In the
following passage, he explained to me how doing bodybuilding helped him
cope with frustrations and thus enabled him to move forward with his hopes:
Well, when I, it releases the frustration, any frustration I have, any
negative idea that I don’t think I can do it or why is it taking so long,
well when I lift weights, it gives me a positive attitude. And it
reminds me of Jesse Owens as a track star, and the athletes of my
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university, the Olympic team, and so I, I can tune in when they have
athletic sports like basketball, football, and baseball, by me lifting
weights [chuckling] I’m some, some sort of an athlete. And so, I’m
able to mentally think on a small level, of accomplishment, like when
I lift so many reps, there’s so many, um, repetitions with my weights,
I can see the advancement, and I can see that I’m trying. (Demetrius
Interview 3-14-05)
Similarly in an interview on 5-9-05, he said: “You have to lift weights and
say well, make your little small accomplishments lifting weights, whenever
you feel bad, you just lift some weights.”
Thus, Demetrius’ hope for having an exporting company
shaped his occupations as he spent time researching his ideas for the
company. As he was able to move forward in his research, he also
strengthened his hopes for having an exporting company. In addition, he
found support for his hope of being an exporter, as he read about the success
of other businessmen. As he engaged in the occupation of studying foreign
languages, he was also supporting his hope of exporting to other countries.
Finally, he found support for his hopes by staying positive as he worked out
frustrations through bodybuilding, and saw success in being able to lift more
weights. In the next section, I will describe how Frank’s hopes were related
to his occupations.
Frank’s Hopes Related to Occupations
One of the primary hopes of which Frank spoke was his writing.
Though Frank was working at a large supermarket during much of the time
we were doing interviews together, writing continued to be the focus of much
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of his hope. Thus I will focus this analysis on hopes related to his writing.
The very act of writing itself was the expression of a hope for Frank. He had
hopes of writing two books – one more process and experiential and one with
more concrete advice and helpful tips.
S: So that’s how you plan to bring them together – the responsibilities
and, and the experiences?
F: One, both uh, different with two, uh, addressing two different
factors.
S: One of the books is about your organizational…
F: Right and the other one is about my experiences, things that have,
other than responsibilities, that have enriched my life.
(Frank Interview 3-8-05)
Frank also talked about how his hopes were supported through the
occupation of writing: “I go into more, uh, other parts, where I, I try to
compensate in my writing, for uh, anything that I have weaknesses in” (Frank
Interview 3-8-05). Frank also found that engaging in the occupation of
writing his books, and seeing progress, helped him feel more hopeful and
positive in general. “And as my writing progresses, and as I move on
through life, I’m getting less and less overwhelmed” (Frank Interview 3-15-
05). The occupation of working also provided some support for his hope of
writing, even though it took time away from it.
Yeah, like uh I don’t have as much time to write. So I have to take a
break cause I have to work. But then when I’m at work, I start
thinking of things that, uh, I have to add on to where I stopped.
Whereas if I just continued without having those thoughts occur, I
would have not made it as good as it would be.
(Frank Interview 3-8-05).
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Frank also found a lot of help for staying hopeful in the occupation of
reading as he read things that he thought would be helpful to his recovery.
“I’ve tried to read things that will change me. If they don’t change me, I
don’t bother with it” (Frank Interview 3-8-05). He also read specifically to
support his hopes: “But, I’m trying to, I’m trying to find ways of not
thinking like that, that’s it’s all gloom and doom by choosing books and
things, trying to find answers…” (Frank Interview 3-8-05). When he read, he
found ideas that were helpful and allowed him to feel more hopeful.
S: So, do you read a lot of books like that, like the…
F: Yeah, I’ve read a lot of books. They all give me a different,
uh…uh, view of how to help myself but this one has been the most
helpful, you know.
S: What, what about it have you found to be helpful?
F: That I can read it over and over again, and its, uh, which I don’t
have to depend on my own writing to read over and over to help
myself re-cooperate. I can start already without, and still try to
complete my work. And if something happens to my work, at least
I’ve done something else to help myself – that sort of thing. (Frank
Interview 3-8-05)
Similarly to Demetrius, Frank also found support for his hopes of
writing in exercise. He liked to do martial arts because of the focus he said it
gave him. In the following passage, he talked about the benefits of martial
arts.
F: “Yeah, it helps me focus, uh, because uh, along with the
medication that I take. Because I can’t handle overwhelming, uh,
amounts of information.”
S: So it’s just helpful, to you, for you to be focusing on something
else.
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F: Right. (And the…) And it has to be something structured, it can’t
be anything, and that’s what Martial Arts has provided.
S: Is the physical aspect helpful too?
F: Yes. (long pause)
S: In the same way? Like focusing?
F: Yeah, because uh, you know, uh…like I’m beg…I’m beginning to
feel like there isn’t anything I can’t do within reason….
S: Hm. So…the, the exercise and the martial arts helps you feel like
you can achieve other things?
F: Within reason. (Frank Interview 3-15-05)
Frank also gave an example of how his hopes were nurtured just by
what he was able to accomplish in his exercises.
I mean like for example tomorrow, I, I can’t wait till tomorrow
morning, because first of all I’m not gonna be at work yet, if I wake
up early enough and I’m going to uh, start my…progression in
exercise in a different way, even though I still have a long way to go.
And that’s a possibility right there. (Frank Interview 3-15-05)
Frank’s hope of writing his two books shaped his occupational
pursuits as he spent a lot of time engaged in writing them. He also found
support for his hopes as he wrote and felt he was making progress. Even
when engaged in the occupation of working at the grocery store, he was able
to gain support for his hopes as he thought of ideas at work that he wouldn’t
otherwise have had. Even engaging in reading strengthened his hopes as he
sought out books that made him feel more hopeful and feel he was making
progress. Finally, similarly to Demetrius, as he engaged in martial arts and
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exercise, he found he had more focus for working on other things. The
progress he made in his exercise routine also helped him feel more hopeful.
Next, I will discuss Lloyd’s hopes in occupations.
Lloyd’s Hopes Related to Occupations
Lloyd’s primary hope was to run his own company and become
wealthy. Much of Lloyd’s work experience had been in painting and owning
his own painting business was one of his hopes.
S: What about um, painting? What about that do you like?
L: Running my own business, having the guys work for me….(Lloyd
Interview 5-4-05)
Lloyd had ideas about how to increase his business by getting his
general contractor’s license. In this case though, as he engaged in the
occupation of studying for the test, his hopes were not supported because he
found that the test had difficult mathematical problems.
L: I’m thinking about, I want to get my general contractor’s license
soon.
S: What do you have to do to do that?
L: Take a big test and it costs like, several hundred dollars, according
to what my dad and my mom said.
S: Have you ever tried to do that before?
L: Yes, and uh, yes, that took the brook uh, South State, um to get my
B1 contractor’s license, and there was a lot of stuff you had to know
and everything. I’m not too good at calculus, that’s some of the things
you gotta know, math.
S: Did you take the test?
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L: No.
S: You just studied for it.
L: Just kinda studied for it, with, with uh, John, my guy before Mark
[Job Coaches at ETE].
(Lloyd Interview 4-28-05).
This hope was born out of Lloyd’s previous occupational experiences
of painting.
S: And um, how long have you been painting?
L: Many, many years.
S: Is that the main work you’ve done?
L: Yes, that’s the main work I’ve done and the construction industry.
S: That and construction, or just you’ve painted in construction?
L: Painted in construction and uh, did my own jobs, here and there.
(Lloyd Interview 3-10-05)
Lloyd felt hopeful he could succeed in his hope of owning his own painting
company because of his previous success as a painter.
S: How do you find painting jobs?
L: …Well they, they just pop up because I have a good reputation of
word of mouth and everything. (Lloyd Interview 5-4-05)
Lloyd also had other hopes for owning his own company. One of the
ideas was to own his own computer company. This hope came from the
computer classes that Lloyd took.
S: Now you, uh, you said you’re taking some class right now?
L: Yes.
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S: What is that on?
L: Computers. And uh, academical.
S: Oh. What do you wanna do with that?
L: Uh, own a computer company. The other parts may help me
become a big giant of computers, this church here, become like Bill
Gates. (Lloyd Interview 7-7-05)
Lloyd had previously described his hopes by saying he had hopes of
one day “Getting married, having children….Uh, own and house and all that
stuff” (Lloyd Interview 7-11-05). When I asked him what made him feel
more hopeful about attaining these things, he described how he would feel
more hopeful if he made tangible progress in achieving one of these hopes.
In the following passage he says that the occupations of dating and working
would help him feel more hopeful. These were stepping stones towards his
hopes of a wife, children, and a house.
S: Are there some times when you feel more hopeful than other
times?
L: Uh huh. Yes.
S: What makes you feel hopeful?
L: Getting a girlfriend or a job or inheriting something from my
relatives. (Lloyd Interview 7-11-05).
As mentioned previously, Lloyd had difficulty accessing many of the
recreational occupations in which he had once engaged. Perhaps that is why
he didn’t mention recreational interests as being particularly helpful as an
outlet for frustration, or arena for success as Demetrius and Frank had
discussed. He did discuss recreational interests from his past wishfully as in,
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he wished he could live closer to the water and be able to fish more (Lloyd
Interview 7-11-05).
Lloyd’s hopes to become a wealthy CEO of a painting company
shaped his occupations as he tried to build his painting business. Sometimes
his occupations didn’t support his hopes as when he found out the test for
becoming a general contractor had difficult math aspects. When he worked
with computers, he felt hopeful that perhaps one day he would own his own
computer business. Lloyd didn’t find support for his hopes in leisure
occupations, perhaps because he didn’t engage in many of them.
Summary of Hopes in Occupations
Each of the three participants in this research had his own hopes that
shaped his occupation occupational engagement, influencing the occupations
in which he chose to engage. Their hopes were in turn influenced by the
occupations with which they were involved. Each of these three men gained
hope as they engaged in work occupations. By working on his research for
his exporting company, Demetrius felt hopeful as he made progress. Frank
felt that his writing was helpful to him in his recovery and allowed him to
make progress on the two books he wanted to complete, thus allowing him to
feel more hopeful. Lloyd felt hopeful about running his own company
someday as he engaged in painting or working with computers. He also felt
hopeful about his larger hopes of a wife, house, and children as he made
progress by working or getting a job.
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As for Demetrius and Frank, their hopes were supported by finding
outlets for their frustration, enhancing their focus, or seeing success through
leisure occupations of exercise. Demetrius also felt that studying foreign
languages increased his possibilities for exporting to other countries. Lloyd
didn’t discuss leisure occupations as being related to his hopes, perhaps
because he wasn’t often engaged in leisure interests.
The literature doesn’t provide much detailed information about the
relationship between hopes and occupations, though it does indicate a
relationship. Borrell et al. (2001) found that a loss of hope was related to a
loss of enjoyment in occupations for older adults. Dykstra (1997), in her first
person account of living with schizophrenia described how her hope of
attending college shaped her everyday activities and in turn she felt more
hopeful as she made progress by engaging in these activities - attending
classes, taking notes, and studying for exams. Thus the relationship between
occupation and hope is seen in more detail in the lives of the three men who
participated in this research, though the literature provides some support for
such a relationship.
Along with the support for their hopes that came from each man’s
occupational pursuits came the critics of their hopes. In the next section, I
will look at the critics of each man’s hopes and at their critiques. Then I will
describe how each man responded to his specific critics and what response
can be found in the literature for critics of hope more generally.
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Critics of Hope and Views on Hope
Some critics said that Demetrius’, Frank’s, and Lloyd’s hopes were
each unrealistic in some way. Each of them had specific hopes that involved
running a business or being self-employed. The critics and critiques of each
man’s hopes varied, and each man responded differently to these criticisms.
Yet each of them continued to persevere in pursuing their hopes. In the next
section, I will discuss some of the criticisms about their hopes and their
subsequent responses to those criticisms. Finally, I will look at what the
literature says about unrealistic hopes and how to respond to other’s hopes.
Demetrius’ Critics of Hope: “Reality Checks”
As mentioned earlier in this chapter, Demetrius didn’t feel as though
he had many people who understood and supported his hopes. I asked him if
there were people he found to be encouraging of his hopes. He replied “No,
no. Uh…It’s like, uh, like even with my mother, they wonder why am I
doing this? I have, I’ve learned not to really try to explain to them what I’m
doing, because of criticism” (Demetrius Interview 3-14-05). He talked about
how discouraging it was when people didn’t understand and gave negative
feedback about his hopes.
People from church, friends, they always ask me what do I do and I
tell them I have my own company and we’re doing exporting, export
computers. And when they ask more detailed questions, it’s a little
frustrating. I can’t really tell them that we’re going re-organization
and, and restructuring because it’s a negative thing to say. And…
they may want to start their own business and so I can only tell them
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general answers to the specific questions that they may ask. So it’s
kind of frustrating sometimes. (Demetrius Interview 3-14-05)
Demetrius also found criticism from some people in business from
whom he expected more support.
Um, some people in the business field will be negative. They, they
would say “Why, why would you want to export all the way to
another country when you could make money in the United States?”
So, I would say that, they’re right, it’s more difficult to export to
another country, when you can make it in United States. But, it’s not
necessarily the right thing to do. (Demetrius Interview 5-9-05)
About the only people that seemed to understand his passion to do exporting
of healthcare equipment, were people who shared an interest in healthcare.
“Usually people who are in the medical field are more positive, they’re more,
I’ve found, I haven’t found anybody in the medical field that were against my
uh, aspirations” (Demetrius Interview 5-9-05).
Demetrius’ experience with people not understanding his hope to
export healthcare equipment, except for people in the medical field, probably
led him to part of his views on how to relate to someone’s hopes. The
following is an analysis that Demetrius offered about why some people may
not be able to understand others’ hopes and how to find people who would
understand your hopes.
It’s like um, to them it’s like talking about the moon. I mean, the only
people would understand the moon is NASA. I mean, you talk to
people at NASA, talk about the moon, oh yeah they’re really into it,
and really motivated about it, talk the space shuttle and the whole
space program. Talk somebody else about it, that’s not into
engineering or the moon, it’s like it’s far-fetched man, it’s way out
there, I don’t wanna hear, really talk about, let’s talk about something
else, right? But like, exporting is like that, you talk to people that are
in the export industry, they’re really motivated about it, make a lotta
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money. You know they’re really for it, helping the United States
deficit, but if you talk to people outside that realm, it’s like what is it,
you’ve never heard of it before, they wanna talk about something else.
So um, you don’t get too much motivation uh, I was reading, certain
millionaires would say that, to stay motivated he’d talk to, talk to
people that are into what you’re into. You know, like um, surround
yourself with, with those people in that industry. I’m supposed to
surround myself with people that are in exporting, and that way I will
stay motivated and I won’t have to constantly try to motivate myself,
it was, it’d be automatic. (Demetrius Interview 6-27-05)
These reflections led me to ask Demetrius about whether people
should ever give negative feedback about someone’s hopes. Thinking about
my experiences working in mental health, I asked particularly about someone
who might think that the person’s hopes were unrealistic and that they were
helping him/her not be disappointed. Demetrius referred to this kind of
feedback as a “reality check,” and said that people had given him that kind of
feedback (Demetrius Interview 5-9-05). In the same interview he said “it’s a
shame. I think it like uh, a person should do whatever they wanna do,
whatever their desire is, and they should encourage the person to do that.”
Obviously, Demetrius felt very strongly about not giving this type of negative
feedback about a person’s hopes, even if someone thought they might be
helping the person avoid disappointment. I asked him if there was ever a
place for a “reality check.” He responded, “I think you should never do it”
(Demetrius Interview 5-9-05). He also gave a good example of how even a
little doubt or negative feedback could change the outcome of an effort.
It’s like, it’s like standing at a free throw, and everybody’s booing
you, you gonna take a free shot with a basketball, and you just have to
have hard armor and you just have to just block it out of your mind.
People are booing, and you have to concentrate, focus on making the
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shot. It’s like that. It’s like, it’s like, whatever they say, you make
sure it just goes in one ear and out the other. Because, all they, all
they can do is make you feel, doubt yourself, that’s one thing a person
doesn’t wanna do in business or in life is doubt their self. (Demetrius
Interview 5-9-05)
He also referred back to his role model Thomas Edison with some
humor about why you should never give a “reality check.”
So I don’t think you should ever do it. I think it’s a shame, it’s like
Thomas Edison when he was doing light bulbs, that guy says you
know, I think it was um, 19,999 failures. Uh. People are saying what
are you doing? [Laughs] You should give it up, Thomas Edison!
You’ll never find it. The light bulb, you’ll never do it. And he just
locks it out of his mind, says uh, I don’t wanna hear that. I’m gonna,
gonna invent the lightbulb, and so he just keeps going through his
experiments, and it takes years, might take 5, 10, 15 years, and then
he finally comes up with Tungsten, and he invents the light bulb. And
all those people said he couldn’t do it, you know what they said?
They said oh I knew you could do it all the time. (Demetrius
Interview 5-9-05)
Even though Demetrius received much criticism for his hopes of
having an exporting company, he continued to pursue these hopes. He felt
that people should never discourage someone else’s hopes, even if someone
thought they were helping protect the person from the disappointment of not
achieving his/her hopes. He described how such criticisms could cause
someone to doubt him/herself and thus affect the outcome of what someone
is trying to do.
Next, I will discuss the critics of Frank’s hopes.
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Frank’s Critics of Hope: “Dampening Hopes”
Frank had a little different view on people who give feedback that
someone’s hopes are unrealistic, he called it “dampening hopes.” Frank
seemed to focus more on his own reaction to people’s advice. He seemed to
think that though he might not like someone dampening his hopes, it might
have a place.
And then, when I think of it that way, then I go back and I think about
all the books I read, and all the things people said, and now it begins
to make sense, why they kind of tried to dampen my hope, not to be
too hopeful, not to be too optimistic, that sort of thing. And get, get
myself so worked up that I miss the whole picture. (Frank Interview
7-11-05)
In his view, what seemed to be more important was whether the person
getting the advice was ready for it. He seemed to feel that perhaps people
had been trying to dampen his hopes for good reasons, but he wasn’t mature
enough to understand them at first.
S: Mm. Well, so, if you were gonna give advice to people who, like,
they, they’re, they think they’re, they’re helping people by dampening
their hopes or whatever because they’re not realistic, would you say
that that’s a good thing, or would you say don’t do that?
F: Depends on how you make them understand. Because probably the
same thing I’m trying to tell you, people have tried to make me
understand, but they didn’t put it in those ways and I wasn’t, and I, I
wasn’t mature enough at the time to think like that. I was kinda
getting the direction it was going at that, but I wasn’t mature enough.
Now I’m finally mature enough to put some understanding to it.
(Frank Interview 7-11-05)
Frank also said that when someone is thinking of giving advice about
someone else’s hopes, the person with the advice needs to be wise about
whether to give it or not.
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S: …So, do you, do you think there’s ever a time…do you think
there’s a time when people should be encouraging, times when they
shouldn’t be, or…
F: That’s right.
S: And, and how do they know the difference, like what’s the time to
encourage and what’s not?
F: Depends on how wise they are, [chuckles] you know—
S: [Laughs]
F: If I get to the end of my journey, where I write and so on and so
forth, then, then I’ll be able, then that’s a good place for me to set that
example. (Frank Interview 7-11-05)
Finally I asked Frank if he felt people had sometimes encouraged his
hopes when they should have discouraged them or vice versa. Again he
focused on his own reactions more than the advice being offered. “Uh, just a
lot times when I was disappointed in myself and uh, I could see that people
weren’t able to help me and, uh, got frustrated over the fact, basically” (Frank
Interview 7-11-05).
When Frank received criticism about his hopes being unrealistic, he
felt it was his responsibility to be able to respond well to that criticism. He
also said that he could understand why people had given him such feedback
in order to help him see the whole picture. He said that people offering such
feedback about another person’s hopes should be wise enough to know when
to offer the feedback.
In the next section, I will describe Lloyd’s critics of his hopes and
how he responded.
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Lloyd’s Critics of Hopes: “Wake Up and Smell the Coffee”
Lloyd also had people trying to tell him that his hopes were
unrealistic. He felt that this kind of feedback was not uncommon for him –
particularly in regards to him having his own business and making lots of
money.
S: What if somebody thought that was not realistic [having his own
business], should they tell you that?
L: Lots, everybody’s told me that. Everybody says I can’t even make
$5,000 a year, “why do you think you should get $100,000 a year?”
Lotta people say that. I’m now seeing a woman named Karen. She
says “you’re not gonna make no $100,000 a year. Not even gonna
make $30,000 a year. You should say you can’t make $5,000,
$10,000 a year.” And she’d yell at me, and say “you’re retarded” to
me. (Lloyd Interview 7-7-05)
I asked then how he felt about that kind of feedback towards his hopes.
Though he acknowledged the negative impact such feedback could have, he
also seemed to be somewhat philosophical about it. Similarly to Frank, he
seemed to imply that it was his responsibility to make sense of the feedback.
Eh, depressing, but she’s trying to tell me to wake up and smell the
coffee. You’re born that way for a reason. God make you that way,
disabled, for a reason. Where I can’t make a large amount of money
to have a house and all the good things in the world. Buy a beautiful
wife and all. She says God put me on SSI for a reason, Social
Security. (Lloyd Interview 7-7-05)
Thus Lloyd reported that many people had been critical of his hopes
for wealth. According to Lloyd, this feedback was given in a very negative
manner. Though he said that it was depressing to get such feedback, he also
thought such feedback was meant to be constructive.
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Summary of Critics of Hopes
Demetrius, Frank, and Lloyd all had people in their lives who didn’t
think their hopes were realistic. Each one of them talked about how difficult
it was to have received such negative feedback. Demetrius reacted with the
strongest advice not to ever give someone a “reality check” for his/her hopes.
Frank and Lloyd both seemed to agree that though such advice might be hard
to hear, it was more their failing to appreciate it than the fault of those giving
such advice. Frank did add a caveat about the necessity of the person trying
to “dampen” hopes to be wise enough to know when to encourage and when
to “dampen.” Perhaps some critics of their hopes thought that it wasn’t
realistic for people with schizophrenia to hope to be self-employed or run
their own company. In the case of each of these three men, though their
hopes were lofty, they were grounded in their experiences and expertise.
Demetrius wanted to run his own exporting company, but he had previously
been a partner in an importing company, had done research on exporting, had
a business degree, and had helped other people get their companies started.
Frank wanted to write two books, but he had spent a lot of time writing his
experiences and advice for the books already. He had also read many self-
help books. Lloyd wanted to be the CEO of his own painting company, but
he had been doing painting jobs for many years, had his own business cards,
and had a van full of supplies.
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Perhaps the critiques were based more in a kind of protective and
paternalistic attitude of trying to keep these three men from being
disappointed by setting their hopes too high. An example of this debate
about hopes being potentially misleading or hurtful occurred in the
psychological literature. Polivy and Herman (2002) started a debate about
“false hope” when they wrote an article about how some people appear to try
to make the same changes in their lives over and over, despite repeated
failures – eg: stopping smoking, losing weight, or stopping drinking. They
seemed to feel part of the problem was a “false hope” that these changes were
possible even after repeated failures. They suggested that if the people
making these repeated failed attempts could learn from them, they would let
go of these hopes and move on to a more productive use of their energies.
They also suggested that part of the problem with these “false hopes” was
that the people who hold them have hopes that are too high and unrealistic.
Snyder, editor and contributor to the Handbook of Hope (2000), author of
The Psychology of Hope (1994), and numerous articles and studies about
hope (Snyder, 1998; Snyder, Irving, & Anderson, 1991, Snyder, Cheavens, &
Michael, 1999) disagreed with Polivy and Herman’s ideas about the problem
with false hopes. He and Rand (2003), responded to this article by saying
that there really is no such thing as “false hope.” In Snyder et al. (2002),
Snyder and colleagues analyzed the concept of false hopes in relationship to
their research. They stated that in relationship to all their hope research
“perhaps in future research, evidence will arise to substantiate the existence
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and parameters of false hope. If false hope presently exists, however, we
have not found it (p. 1017).” They also responded to specific issues critics
have cited to support the concept of false hope. Snyder and Rand (2002)
stated that people who set their hopes high are just as likely to succeed as
those who don’t. They also found that if the one hoping has good ways of
finding a pathway, she/he will adjust when encountering an obstacle and find
a way to move forward. Even if the person’s hopes are so high as to be
delusions, the problem more often is in “waypower” of ascertaining how to
revise the hopes and accomplish them, than in the hopes themselves (Snyder
et al., 2002).
These arguments by Snyder et al. (2002) and Snyder & Rand (2002)
against the idea of “false hope,” and supporting a process of hope even for
those with high hopes, support Demetrius’, Frank’s, and Lloyd’s views of
hope. They didn’t feel their hopes were too high or potentially misleading.
They sometimes felt hurt by others who offered negative feedback about their
hopes. Demetrius in particular felt that negative feedback about someone
else’s hopes should never be offered. Frank’s advice was to be wise in how
and when negative feedback about another’s hopes is offered. Lloyd said that
kind of negative feedback was depressing, though he thought it was meant to
be helpful.
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Final Summary
Overall, hope seemed to be a positive force in each of these three
men’s lives. For all three of them, they had a process to their hoping. As
they encountered obstacles, they were able to find pathways around the
obstacles, or reconfigure their hopes so that they could continue to move
forward. Their struggles and experiences in hoping also speak to the need for
support in trying to achieve one’s goals and hopes. Demetrius, Frank, and
Lloyd all had strategies for maintaining their hopes. They each found support
for their specific hopes in relationships, religion, role models, and
occupations. Their specific hopes were also nurtured by their general
hopefulness, much of which seemed to come from religious views that things
would indeed get better, if not now, then in the long run.
The hoped-for world that each of these three men imagined and
dreamed about – a world in which they would have good jobs, a house, and a
family of their own, should not be only a personal dream. This vision of a
world in which everyone can find their personal and occupational niche and
be adequately supported and fulfilled is a vision that we can all aspire to, and
more than that, work for. This is the challenge of Bloch’s (1959/1986) idea
of hope as a call to what might be if we work towards it – this view of hope
as a call to social transformation. This is also the view of occupational
justice – a world in which everyone has occupation that is both satisfying and
sustaining (Wilcock & Townsend, 2000; Whiteford, 2000). This world in
which Demetrius, Frank, and Lloyd and all others who are occupationally
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marginalized, find adequately supportive and satisfying employment is only
possible when we as a society begin to address the barriers which prevent
such access – stigma, disability payment disincentives, poorly paid jobs, etc.
It is also important that as we address the barriers which prevent
occupational access at a societal level, we address the ways in which each of
us may undermine someone else’s hopes. As an occupational therapist, I
often thought it was important to help patients in our psychiatric hospital
make sure their hopes and goals were “realistic.” My experience talking to
Demetrius, Frank, and Lloyd called into question this belief. At the very
least, their advice about giving negative feedback about someone’s else’s
hopes should be a caution. Such advice should be given sparingly and
sensitively, if at all. At the most, perhaps this advice about someone else’s
hopes is not helpful. As Snyder et al. (2002) write, perhaps what is most
important is helping those with whom we work or with whom we have
personal contact to determine what will be required to achieve their
goals/hopes and how to work towards them in a process of hoping.
In the next chapter, I will discuss more about their experiences with
ETE.
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ETE Revisited
ETE as a Different Kind of Program
ETE was a special kind of employment program for people with
mental illness. It was a program that removed barriers for people seeking
employment through their agency. All consumers had to do was to come
through the door with a mental illness and a desire to work. They wouldn’t
have to fill out reams of paperwork or attend lots of classes to begin. They
would immediately begin working with an employment specialist who would
get them started on finding a job, and not just any job but the kind of job that
they desired and that had possibilities for advancement.
Bob had instituted this kind of barrier-free protocol when he became
director and found there were very few clients working with ETE. Because
of the changes Bob instituted in removing barriers to working with ETE, and
using actual employment as the method of rehabilitating, ETE went from a
very small caseload with only a few people working, to a full caseload of
about 60, over 1/3 of them working, and a waiting list of over 100.
He explained to me during my time at ETE that mental health
consumers needed the kind of motivation and feedback that could only come
from real world situations. That is why they had moved to a rapid
employment model that quickly got clients involved in applying for jobs,
interviewing, and hopefully working. He had also explained that many
consumers had become so reliant upon a mental health system that fosters
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dependency that they needed to be empowered and to have as few barriers as
possible to accessing services. Bob described ETE as an employment agency
for adults with mental illness – not a mental health program. Later, I will
describe how this would turn out to be a crucial distinction. First though, I
will describe each of the three research participant’s ideas about ETE.
Demetrius’ Ideas about ETE
Demetrius had been working with ETE for several years, long enough
to see the change in ETE’s philosophy and programming after Bob became
director. He described how ETE functioned initially with more traditional
job readiness programming. They also seemed to focus more on finding a
client “a job,” than a specific job of interest to the client.
They [ETE] had different type of opportunities, like maybe um, a
library aide. I had to get tested, set me down to take a test to be a
library aide, cuz I had a college degree so I qualified to be a library
aide. So I went to Garden High School to take a test in a, in a room
with about fifty people. So I passed the test, then for a whole year I
went on interviews to try and get a job as a library aide. And a library
aide, I said I just went along with it because this is what, how ETE
was at that time. And so um, it wasn’t really, I wasn’t really that
enthused about it…. As far as exporting, teachers, teach—li—well
librarian aide has nothing to do at all with exporting, uh, it’s like two
apples and oranges, you know it’s like two different, two different
type of uh entities… So I went on uh, maybe twenty
interviews….And it was just a whole year wasted. And that was based
on, that’s, that’s the program that ETE had at the time. You know
they weren’t really into, you know, helping me to become, get a job in
exporting. They were just getting what was available, what was out
there. (Demetrius Interview 6-27-05)
These types of job interviews, in fields unrelated to the client’s hopes
and desires, happened despite clients like Demetrius telling ETE staff that he
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wasn’t interested in such jobs. Later, clients like Demetrius saw the
difference when ETE’s philosophy and approach changed.
And so, it was after uh so many failed attempts, I guess they just
decided, “well let’s see what does he want?” Cuz no one was hiring
us anyway, so when I told them about exporting. Well Brian, he said,
well that’s what we wanna try to do. (Demetrius Interview 6-27-05)
After the focus of ETE’s program changed, Demetrius felt supported
by his job coach Mark, in his quest to become an exporter.
Mark was really supportive as far as um, um, helping me get started in
importing, exporting. Somebody used to own a company, and so
before the company went belly up, when, when it broke, because the,
the president wanted to do missionary work, um, it was making
money. So Mark thought that was b—that was pretty good, he’s very,
he’s been very helpful on getting companies that do exporting. His,
his girlfriend is into that industry, um, so he’s been very helpful as
motivator, I can talk to him about exporting and, and he doesn’t get
turned off on it, he doesn’t say uh, let’s talk about something else. He
doesn’t do that. He says let’s, let’s motivate you, motivate me even
more to get a job in exporting, and start a business in exporting.
(Demetrius Interview 6-27-05)
Demetrius also described how ETE was different from other employment
programs, particularly with the newer focus.
So when you have a majority of the people only have high school
degrees, we’re talking millions and millions of people who only have
high school degrees, so then, when you come into their system, the
employment office, you’re like, one in a million, and they don’t have
anything specialized for you. They only have programs for people
with high school degrees… But now like ETE would, is, an exception
to the rule, where they would cater to programs for somebody with a
college degree, where they take time with someone with a college
degree. (Demetrius Interview 6-27-05)
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Frank’s Ideas about ETE
Frank also had been at ETE long enough to see ETE change from its
initial job readiness programming. He described to me the initial focus of
ETE programs.
Like, there was a phase a long time ago, where we would just have
classes. We would first have classes about dress code, interviewing
skills, uh, artistic expression, uh, uh, we would role play, uh, we
would have people come in a discuss things, various types of things.
And uh, we would even have a booklet, but that was, but that was
something that didn’t work out. But even that was a little helpful,
because it gave me time to explore myself, and to think through things
before I was ready to work. (Frank Interview 3-29-05)
Though there was a lot of job readiness programming initially, Frank
found it somewhat beneficial. Frank was able to see the changes that Bob’s
directorship brought.
And now, they have a more, uh, less of a training approach and more
of a hands on approach, where they help you look things up on the
internet, they, uh, counsel you, they’re a speaker on your part, behalf,
for the uh, employers, where nobody else would do that, because it’s
their, it would be their job…. Uh, Bob is an industrial psychologist, so
he knows how the mind works. He helps us through when we, uh, are
incapacitated by our, uh, illness. And he knows a little bit about how
the mind works, so he can direct us through his own training. (Frank
Interview 3-29-05)
Frank found ETE to be a different kind of mental health program. He
described various aspects of the program’s uniqueness. The first thing Frank
mentioned was how they empowered him so he could help himself.
I see them as a provider, who, that won’t give me everything but will
help me, uh, do things. You know like, the book question without a
question, the manager, a leader’s role is not to do things for you, but
to allow you to do things for yourself. And that’s what Enrichment
through Employment has helped me do. It’s helped me, it’s allowed
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me to do things for myself, which I would not have been able to do
without them. (Frank Interview 3-29-05)
Although Frank seemed to have a very positive relationship with ETE
overall, he had some conflicts. The most conflict he had was with Mark, his
Job Coach, about whether to leave his job at the grocery store or not. Frank
was able to stay with his job for several months with support and
encouragement from ETE. After sometime, Frank became increasingly
unhappy with the struggle to remain employed at his job. He told me in an
interview on 5-10-05 that he had decided to leave his job at Ralphs. He was
particularly concerned that Mark not try to stop him from quitting. “I’m not
gonna let Mark manipulate me and say, well you can’t quit, you can’t, don’t
quit (Frank Interview 5-10-05).”
Lloyd’s Ideas about ETE
Lloyd had been working with ETE for a while but didn’t describe any
changes in philosophy and programming associated with Bob’s directorship.
When I asked him about what he found helpful about ETE, he said “they’ve
been helpful with uh, getting to know my limitations physically and mentally
(Lloyd Interview 4-28-05).” Mark and Lloyd seemed to get along pretty well
in the job sessions I observed, yet they were sometimes in conflict over what
Mark perceived as Lloyd’s unrealistic employment goals. Lloyd explained to
me about Mark’s response to his desire to earn several hundred dollars an
hour. “Mark tries to get me a job and Mark says that, to make $300 an hour,
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500 bucks an hour, and, and $700 an hour is not realistic unless I know my
skills and really know my shit (Lloyd Interview 5-4-05).” Sometimes Lloyd
seemed to think that Mark was not being helpful enough in finding him a job,
and that Mark didn’t believe in his abilities, as seen in the following
passages.
L: Uh, no, he thinks it’s not possible and I’ll be probably end up
flipping burgers the rest of my life, Mark says. He says I’m hopeless.
That’s why I like to quit Mark cuz, people like Mark are a dime a
dozen.
S: Who says that?
L: Uh, my dad or mom. And them um, my dad says why isn’t Mark
helping to get you a job? And then he says… I agree with my dad,
he’s terrible, nothing at all happens. (Lloyd Interview 5-4-05)
Most of the time though, Lloyd was more positive about ETE and Mark
helping him find a job.
S: And what do you think about ETE?
L: It’s a good program and helps people. Mark says I will benefit a
lot from ETE becoming more realistic. He says that, uh, there’re not
many offers out there anymore that pay $60/hr. like they used to, like
twenty years ago when things were good.
ETE Closes
Each of these three men found ETE to be helpful in their quest for
meaningful employment. Each had some issues with ETE – from the length
of time they had been looking for work, to the fact that ETE counselors tried
to keep them from quitting jobs. Overall, though, they seemed to feel that
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ETE was different from other mental health and employment programs, and
thus more helpful.
That is why the closing of ETE was even more poignant. It was not
due to a lack of efficacy, but because of struggles of defining the program
and because of funding issues. The agency was mostly funded by the
Department of Rehabilitation since they focused on finding jobs for people.
Another small part of the funding came from the Mental Health Department
for doing some case management with clients after they were employed.
ETE had not had a raise in their contract funding for several years. That
meant that the staff had not had a raise in several years either. ETE decided
that they would seek additional funding through their contracts in 2005. The
Department of Rehabilitation said they couldn’t provide more funding. The
Mental Health Department said that the only way ETE could get additional
funding was if they became a more traditional mental health program with
more mental health services offered through ETE. ETE refused to accept the
renewal of their contracts with both agencies without increased funding.
Since the agencies wouldn’t provide any additional funding, and since ETE
refused to sign the renewal for the existing contracts, ETE closed its doors in
June of 2005. Bob said they would continue to maintain their lease on their
offices and try to secure more funding to re-open.
In the meantime, all the clients were referred to other programs. The
staff left for other jobs. It all happened very quickly. The participants in this
study who were clients of ETE seemed to be in shock about ETE closing, as
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was I. They seemed to cope with the news better than I thought they would.
Perhaps they were able to be somewhat philosophical about ETE closing
because these kinds of decisions beyond their control were not uncommon to
them as mental health consumers who had been in the system for some time.
Demetrius has to Do it Himself after ETE Closes
It seems that just as Demetrius was finally feeling that ETE was
listening to him and he was making progress towards his hopes for
employment in exporting, word came that ETE would be closing. Demetrius
said his first reaction was “at first it was kind of like a shock (Demetrius
Interview 6-30-05).” I believe ETE had sent out some letters explaining the
funding issues and asking for clients and their families to support ETE’s
position. It still came as a shock to Demetrius and others when they found
out that ETE would really be closing. In a later interview he was better able
to describe the feelings he had about ETE closing.
I just think that uh, it’s kinda sad, but um, think what’s gonna
happen….and they’re [the clients] gonna be left to fend for
themselves. Um, the uh, the odds of them getting a job for
themselves is very, it gets slimmer and slimmer as the months pass by
that ETE is closed. Cuz ETE was supposed, one-on-one…And, and
the employment office gives them large numbers of people
basically…So, they’ll still be stuck on SSI, and trying to find a job,
and they probably, the odds of them getting a job now is gonna be
slimmer than what it was when ETE was in operation….So I think it’s
sad. (Demetrius Interview 7-14-05)
Though Demetrius was upset about ETE closing, he continued to be
very pragmatic in his general reflections about what it meant.
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Not, well, I got, oh it was a shock at first, but I got over it. So I kinda
cleared it out of my mind, I don’t think about it, I just think about um,
what, what can I do from here on. And, I don’t look in the past too
much. Uh, haven’t really thought about it, uh, so, after after I got over
the shock, then I just kinda figured it’s like going to a funeral. Then
after the funeral’s over, then what do you do next? So it’s like that.
(Demetrius Interview 7-22-05)
Interestingly, Demetrius’ choice of funeral imagery seems to suggest
more grief than he was able to express about ETE closing. His final
reflection about ETE was about what that meant to him personally and his job
quest.
But I have to do it my own, my own energy has to do it, because
there’s, there’s no agency now. So I have to do it myself, I have to
wanna do it, I’ve gotta psych myself to do it, I have to be my own
cheerleader to do it. I gotta say let’s do it, everyday I gotta get up and
say ok, I’m going to um, send out some emails. (Demetrius Interview
7-22-05)
This sense of having to do it all himself, including motivating himself,
gets at some of the basic things that a client receives from a program like
ETE – assistance, encouragement and motivation. These are things that are
very important in supporting hopes and goals a client may have for himself.
Demetrius went on to describe how he had been trying to keep working on
his goals/hopes on his own, but how difficult it was.
So, like two weeks ago I was supposed to um, go on the internet, like
that, you’d, like now the internet’s down so I can’t do anything, but
um, two weeks ago I was supposed to do, do something on the
internet, I messed around, trying to get my resume, how to do, how to
send resumes out, so I only put in half an hour instead of an hour. So I
have a struggle. I have, I have to have obstacles that I have to
overcome now. (Demetrius Interview 7-22-05)
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After ETE closed, Demetrius spent several months in some kind of
referral limbo. Finally he did get connected and began to receive
employment services from the Department of Rehabilitation and its “Job
Club.”
Frank Has to Depend on Himself More after ETE Closes
Frank also seemed disturbed by ETE closing, but not in the way I had
anticipated. He had been asked by the staff at ETE to do an interview with a
local reporter about ETE and the services it provides, in an effort to help keep
it from closing. After he did the interview, ETE ended up closing anyway.
Frank seemed to feel in some way that he had failed to help enough with the
interview, because ETE closed anyway (Frank Interview 7-11-05).
Similarly to Demetrius, Frank was fairly pragmatic and philosophical
about ETE closing. He seemed to feel that ETE closing just indicated that he
needed to depend on himself more, and perhaps had come to rely on ETE’s
help too much (Frank Interview 7-11-05). He also felt frustrated that the
ETE staff had been able to find jobs quickly after ETE closed but he
continued to have difficulty finding a job: : “Yeah they, they [ETE staff] get
back on their toes real quick. It amazes me how people always do that, and
I’m not able to” (Frank Interview 7-11-05). Though Frank didn’t elaborate
much on his feelings about ETE closing, in a subsequent interview, he did
name ETE’s closing as one of the negative influences in his life.
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Having mental illness, dizziness at work, Enrichment Through
Employment closing down, all these negative things that make you
feel ashamed even for feeling good. You know, that’s, that’s not the
way it should work. (Frank Interview 7-28-05)
Just as with Demetrius, I kept in touch with Frank as I worked on writing this
manuscript and similarly to Demetrius, it took Frank several months to have
another agency begin to work actively with him again.
After several months of being closed, ETE had re-opened on a limited
basis to offer direct employment to some former clients doing piece-work.
Frank explained to me that the purpose was to generate some funds to re-
open ETE and also to provide some limited employment to former clients.
Frank worked there for some time each week. He was still looking for
another job as of December 2006.
Lloyd Feels ETE Closing is Partly His Fault
Lloyd also seemed to be upset by ETE closing. He seemed to think
however, that it was closing because of something he and his job specialist,
Mark were doing.
S: So uh, you said you got a call from Mark or something, that the,
they were ending your case there?
L: Uh, my parents talked to them, and they said they’re, they’re
ending my case because Mark and I are both doing something illegal
and uh, even though it wasn’t legal, Mark lost his job and I got
terminated the case, because, they started to ask things, I made all that
money and not report it to Social Security and SSI and that’s why I’m
having problems.
S: I think actually though, it may be, you may wanna check with
Mark, but I think the reason that they’re closing all the cases out is
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because they’re closing the agency. Cuz they didn’t get enough
funding to stay open.
L: I thought it was uh, dad says part of the reason, but the main reason
is this part, it’s me and Mark’s fault for uh, going out there, making a
quick buck and not breaking the law, and now where you have to pay
the piper if you’re found guilty. Dad says they could still take me to
court for, I could lose my Social Security for a whole year, year and a
half, before I get back on again…. (Lloyd Interview 7-7-05)
After ETE closed, I asked Lloyd how he felt about it closing. He
didn’t express many feelings, but did express concern about how he would
get help with practical matters like gasoline.
S: So did you ever hear from Mark again?
L: Uh no.
S: You got that letter though, about ETE closing?
L: No.
S: You didn’t?
L: No. What do I do about gasoline uh, since ETE closed? (Lloyd
Interview 7-11-05)
Like both Demetrius and Frank, Lloyd waited several months before
receiving services again. He spoke to me on several occasions about calling
the Department of Rehabilitation and not getting calls back. After several
more months, Lloyd mentioned that ETE had been in touch with his parents
and was operating on a limited basis. Apparently ETE had gotten a contract
for some assembly work and was offering direct employment to some of its
former clients. Lloyd declined the offer saying it was not enough money. He
indicted they had offered him something around $12 an hour:
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Yes they called my parents and my parents said that uh, to me that
ETE has a job at minimum wage and uh, they don’t want me working
for minimum wage, $12 an hour. It’s not enough money, because I’ll
lose my Social Security and my Medi-Cal and everything, and I
won’t, I’ll be stuck with a lot of bills. (Lloyd Interview 5-2-06)
As of December 2006, Lloyd was still looking for working doing painting
jobs and hoping to work his way into being the CEO of a company and
becoming wealthy.
The Implications of ETE’s Closing
It seems clear that ETE was trying to do something innovative in
being an employment program for people with mental illness and not a
treatment program. Clients like Demetrius and Frank felt that ETE had
listened to them and was a place that supported their goals and took pride in
them. Lloyd felt ETE was helpful too but in a way that was more about
understanding his limitations. Frank had actually gotten employment through
ETE while he was there, though it wasn’t his original goal to work in a
grocery store. He felt he had benefited from working and felt good that ETE
was helping him see how he could advance in his career at Ralph’s and
perhaps become a manager. Demetrius was just at the point of beginning to
contact exporting companies, send out his resume, and fill out applications
when ETE closed. Lloyd was working on getting his equipment and
information better organized to begin trying to get some painting jobs.
After ETE closed, all three of these men spent several months in
transition. It took some time for them to receive services again even after
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being referred to another program. This was the most obvious effect of
ETE’s closing. Besides this immediate effect of transitional time between
programs, the three participants were also still looking for employment.
They all seemed to be trying to make the best of things, but hadn’t been able
to find employment.
Additionally, all three of these men who had faced various challenges
within other mental health and employment programs, seemed to feel a sense
of being once again, cast out on their own. Each of them mentioned either a
sense of responsibility for ETE closing, or not being able to help keep it
open, or concern that they had depended on ETE too much and should
depend on themselves more. This to me, seemed like a very negative
outcome of ETE closing – a sense that once again, the “system” had let them
down and a sense that they should never have “trusted” in it so much.
Finally, there is the frustration that an effective and innovative
program like ETE wouldn’t be recognized for its value and be adequately
funded. Research has shown that employment programs like ETE which de-
emphasize prevocational programming have better outcomes (Gowdy,
Carlson, & Rapp, 2003). ETE could only get the needed and desired funds if
it were willing to be a mental health program more like other mental health
programs. Such policies seem to provide disincentives and discourage
innovation. Demetrius offered some thoughts on why an employment
program like ETE for mental health consumers was not able to get funding.
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He was again both philosophical and humorous. He explained why most
people don’t get involved in trying to get better funding for health services.
Well I just think it’s, it’s basically an interest group. Those people
who are in the health caring field, physicians, nurses, um, physicians’
assistants, those are the ones who care, because those, that is their
profession. People who are outside the healthcare, don’t really care
until it happens to them. You know, if they get sick or if they have a
problem in health, then it m—then it matters to them. But um, usually
most people in United States, they’re not, they don’t, unless they have
a loved one, a aunt, uncle, mother, father, who’s ailing, the bec—they
become concerned. But other than that, if, if it’s not, if they’re not in
the health care industry, and they’re not affected by health care like
that, they’ll basically say thank God for Aspirin [Laughs].
In the end, ETE was left to reinvent itself once again. The same
forces that gave birth to it – the desire of those with mental illness to work
like everyone else, and the desire of parents and families of consumers to see
their loved ones employed – seem to be the forces that continue to drive it
and will hopefully see it through into another reincarnation. It continues to
exist as an employment program offering piece-work to a few clients at the
current time, but with an eye towards an uncertain but hopeful future of again
offering innovative employment services to those with mental illnesses.
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Chapter 8
Conclusions
Introduction
I began this dissertation with the question “What is the experience of
adults living with schizophrenia as they attempt to create meaningful lives?”
I wondered both how this experience intersected with activities or
occupations, and with hopes and the process of hoping. I summarize my
findings in three categories: 1) How the research participants lived with
schizophrenia and how that is related to occupation, 2) How hope and
occupations intersected in the lives of the research participants living with
schizophrenia, and 3) How funding issues impacted ETE and the research
participants. After describing these findings, I discuss their implications and
areas for further research.
How the Research Participants Lived with Schizophrenia and How that
is Related to Occupations
I started this study with the assumption, based on my experience of
working in an acute care psychiatric hospital, that schizophrenia itself would
be a prominent concern in the lives of the men in this study who were living
with it. I did not find this to be the case. The three men who participated in
this study were busy creating meaningful lives and were in fact, much less
concerned with the diagnosis itself. At times, the participants in this study
336
and/or their doctors even questioned the accuracy of the diagnosis of
schizophrenia. Most often, what concerned these three men was the stigma
and prejudice they experienced related to this diagnosis. Their negative
experiences related to schizophrenia ranged from being called names, to
being turned down for jobs or church membership. Unfortunately, the stigma
and prejudice described in the literature (NIMH, 2001; Warner, 2000;
Warner, Taylor, & Powers, 1989) continued and was experienced by these
three men. This negative bias toward schizophrenia may have been the
reason that these men often distanced themselves from the diagnosis and
preferred both to be seen as “regular” or “normal” and to be associated with
the occupations in which they engaged.
The research participants engaged in a variety of occupations that
were meaningful to them on multiple levels. These occupations had personal,
spiritual, and socio-cultural meanings. The men participated in a wider
variety of occupations with more levels of meaning than I could have
anticipated in the early days of my research when I was observing them in
appointments with their job coaches at ETE. Both Demetrius and Lloyd were
trying to work on their own businesses – Demetrius as an exporter and Lloyd
as a house painter. Even though Frank was the only one who was actually
employed, part-time as a courtesy clerk at a supermarket, each of them spent
significant amounts of time in productive activities and/or work.
Demetrius spent time in the library researching his exporting
business, studied Spanish and Japanese on his own because he thought it
337
would be useful in his exporting business, and attended job appointments at
ETE. In addition to working a few hours each week at his job at the
supermarket (the hours varied as he kept adjusting his work schedule) Frank
also spent a significant amount of time writing. He was working on two
books, one about his life experiences and the other about advice for people
who might have difficulties like his. In addition to time spent in job
appointments at ETE, Lloyd spent a good deal of time trying to find painting
jobs by talking to people he thought might need a painter. He was also taking
a computer class that he thought might be helpful to him in his business.
Much of the productive activity that structured these men’s days
might be missed if someone only interacted with them only by asking about
paid employment, volunteer work, or treatment programs. Because they had
productive activities other than work, they had fewer issues with structuring
their time than the literature predicted for people living with schizophrenia
(Weeder, 1986; Minato & Zemke, 2004; Neville et al., 1985). Clearly,
however, the fact that the research participants were able to find productive
activities to structure their time and give them goals should not be taken as
acceptance of their employment status. All three men strongly desired to
have meaningful employment for which they would be well paid.
All three of them received disability payments and benefits. Of the
three, Lloyd was the only one who even temporarily experienced losing his
disability benefits. Thus, he was more concerned than the others about taking
a low-paying job without benefits that might jeopardize his disability status.
338
The concern and reluctance of persons living with schizophrenia to accept
jobs for fear of losing disability payments and benefits is described in the
literature (Resnick et al., 2003, Elinson et al., 2007). Lloyd’s reluctance fit
well with what the literature describes. Demetrius saw the disability benefits
as a bridge to support him on the way to running his exporting business.
Because of his struggles to remain employed at the supermarket, Frank
thought that the disability system should support him better so he could focus
on writing his books without have to struggle as much as he did to remain
employed. The views of Frank and Demetrius about the disability system
differ from the disincentives discussed in the literature.
In addition to the work components of the research participants’ lives,
each of them was involved in religious occupations and leisure occupations.
These occupations gave them encouragement, meaning, social outlets, and
provided opportunities to be seen in more positive roles rather than just as
mental patients. Engaging in these occupations also helped then structure
their time and provided productive outlets when they weren’t working.
Engaging in these occupations was also an outlet for expressing their
personal values such as health and fitness.
These aspects of occupations have been discussed in the literature –
structuring time, expressing personal meaning, being influenced by socio-
cultural values, expressing spiritual meaning (Hinojosa & Kramer, 1997;
Jackson et al., 1998, Clark et al., 1991). Yet, with adults who have
schizophrenia, the richness of this occupational tapestry that makes up their
339
lives may sometimes be obscured by assumptions and biases related to
schizophrenia. It is important to delve more deeply into their daily lives and
occupations to get a more well-rounded view of their experiences of living
with schizophrenia. Being a participant-observer in the lives of Demetrius,
Frank, and Lloyd for a period of time afforded me this view and occupations
provided the lens through which to see the richness of variety and meaning in
their lives. It also allowed me to see the ways in which each man’s desires
for meaningful employment were made more difficult because of stigma and
prejudice related to his diagnosis, as well as disincentives in the system of
disability payments.
How Hope and Occupations Intersected in the Lives of the Research
Participants Living with Schizophrenia
I began this study with the idea, based both on my experience as an
occupational therapist and on my own personal experiences, that hope might
be a powerful force in the lives of adults with schizophrenia. I did find this to
be true but in ways that I hadn’t anticipated. In the process of studying hope
in my dissertation research and in sharing stories of hope with the
participants, hope was nurtured in each of us.
The three men who participated in this study each had specific hopes.
Demetrius hoped to own his own business exporting healthcare equipment to
Australia. Frank hoped to become the manager at the grocery store where he
was a clerk and/or to be a writer. Lloyd hoped to be the CEO of his own
340
business. Although he thought mostly about starting a painting business he
had other ideas as well. He certainly hoped to become wealthy. Had I not
gotten to know these men’s histories, experiences, and occupational pursuits,
I – like others in their lives – might have thought that their hopes seemed
rather lofty. Yet, upon getting to know better the context for each man’s
hopes, I found that they were much more grounded in reality. Demetrius had
successfully run an importing business with some friends for several years,
and had a degree in business. Frank had a degree in public administration
and had been working on the two books he was writing for several years.
Lloyd had been painting houses for many years and been self-employed.
It was also important to learn that each man’s hopes involved a
process of hoping, moving forward toward the hope, encountering obstacles,
and eventually either finding paths around the obstacles or modifying their
hopes. They were not merely fixated on their hopes. They had arrived at
these hopes through a process and the process was continuing. This was very
much like Snyder’s (1994) theory of hope that involved having hopes or
goals, finding pathways to the goals, and drawing on agency to continue to
move forward.
Each of the three participants in this study had strategies for
sustaining their hopes when they encountered difficulties. Each had role
models and relationships that were hope-sustaining. They also drew strength
and support for their hopes from other sources such as religious beliefs and
church. The positive connection between hope and religion has also been
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described in the literature. Snyder (1994) in his study of hope, found that
people who pray have more hope. Davis (2005) found a positive correlation
between hope and spirituality in older adults.
Occupations were important vehicles for helping the men in this study
move forward toward their hopes. Their hopes were shaped by successes
they had had in occupational pursuits related to those hopes. Having success
in other unrelated leisure occupations such as exercising also made them feel
more hopeful. As they read about and listened to the successes of others,
they were filled with more hope. Their hopes also shaped their occupational
choices. They frequently pursued occupations that would help them make
progress towards their hopes. There is not much literature about the
relationship between hope and occupation. Borrell et al. (2001) did find that
a loss of hope was related to loss of enjoyment in occupations for older
adults. This does not really address how important it is to understand
occupations as vehicles for conveying hopes and as forces for shaping hopes.
Each man had encountered people in his life who told him his hopes
were unrealistic. They might have encountered such critics of their hopes
anyway, but having a diagnosis of schizophrenia may have made their hopes
seem more unrealistic. Each of the three participants responded to the critics
of their hopes a little differently. Demetrius said that people should never
give someone else a “reality check” about their hopes because hopes were too
hard to maintain. They need to be supported by others. Frank said that
people had tried to “dampen” his hopes, but he thought it was his
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responsibility to process their feedback. Even so, he said that people should
be wise about when to provide negative feedback about some else’s hopes.
Lloyd said he had been told to “wake up and smell the coffee.” He thought
this feedback was given to him out of concern. He did, however,
acknowledge that sometimes negative feedback was “depressing.”
There is discussion in the literature about the issue of allowing
patients to have false or misleading hope (Wilkinson, 2005; Miller, 1998,
Ruddick, 1999). There was a recent debate in the psychological literature
about whether false hope exists (Polivy & Herman, 2002; Snyder et al., 2002;
Snyder & Rand, 2002). Snyder et al. (2002) analyzed the concept of “false
hope” in relationship to their research on hope. They stated that if false hope
existed, they had not found it. Snyder and Rand (2002) stated that people
who set their hopes high were just as likely to succeed as those who didn’t.
They described how the important aspect of achieving hopes was to be found
in the process of finding paths around obstacles and being able to revise
hopes as needed. This process of hope seemed to fit with Demetrius, Frank,
and Lloyd’s experiences with hope. Overall hope seemed to be a positive
force in each man’s life.
How Funding Issues Impacted ETE and the Research Participants
When I began my research project at ETE. I was happy to have found
a site at which to conduct my research. It seemed like an interesting place
but I had no idea how special it was. I also didn’t know how the story of
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ETE would evolve during my time there. ETE was a program that was
started by parents of adult children who were mentally ill and hadn’t really
been able to work. ETE had become a place that both made employment
accessible for adults with mental illness and helped them to succeed at it.
ETE had a long waiting list because of its success in helping adults with
mental illness become employed. They had over a third of their 60+ caseload
working, which was well above other mental health programs in the area
where it operated. ETE’s director reported that other programs in the area
had employment rates in the low single-digits. ETE had moved from a pre-
vocational model to a rapid employment model based on the theory that
people learn best in real situations such as applying for a job, interviewing for
a job, and working.
After being at ETE for several months and learning what a successful
program it was, I arrived at the site one day to find that ETE might be
closing. The director had tried to re-negotiate ETE’s contracts with the
Department of Rehabilitation and the Department of Mental Health for more
funding but had been turned down. Despite the success of their program and
the fact that they hadn’t had an increase in their contract for several years, the
funding of the contracts would not be increased. They were told that the only
way they could get more funding was to provide additional mental health
services and become more of a traditional mental health program. The Board
of ETE and the director decided that they didn’t want to change the focus of
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the program or continue with the existing contracts, so the agency closed in
July 2005.
This was shocking to me. I had assumed that a successful
employment agency for people with mental illness wouldn’t have trouble
getting additional funding. I thought for sure their success would be
rewarded. Yet, ETE closed. Maintaining the status quo and bureaucracy
seemed to be more important than rewarding successful and innovative
programs.
Besides all the other clients who had to be referred elsewhere, ETE’s
closing left Demetrius, Frank, and Lloyd in a kind of referral limbo for
several months during which little happened. It had taken them many years
to get to the point that an agency was listening to their employment hopes
and trying to work with them. Then it closed. They expressed feelings of
shock about ETE closing. They talked about needing to depend on
themselves more. To these three men, ETE’s closing was yet another
obstacle on the path toward their hopes. At ETE, they seem both to have felt
supported and to have learned that their hopes mattered. Its closure
confirmed for them their need to depend mostly on themselves. Although
they were eventually able to get re-connected to employment services, they
hadn’t made much progress toward their goals when last we spoke.
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Implications and Areas for Further Research
As seen in the stories of these three research participants, a diagnosis
of schizophrenia obscures many important aspects of the lives of those who
are affected by it. The lives of these three men were richly detailed tapestries
of occupations and meaning. In order to see this, I had to put aside my
previous experiences and ideas about life with this diagnosis. By putting
aside the diagnostic lens and by viewing their lives through the lens of
occupation, I was able to see this richness. As an occupational therapist who
has worked for a number of years in mental health, and after doing doctoral
studies as an occupational scientist, it seems that this occupational view
would have come naturally to me. Yet I am also aware that many times in
my practice as an occupational therapist, the psychiatric diagnosis tended to
become a more primary filter than occupation was for understanding people.
As an occupational scientist, I learned about many important intersections
between occupation and concepts drawn from other fields. Sometimes, as I
pursued an interest in one of these concepts it seemed as though I was in
danger of losing my grounding in occupation. It is important that as
occupational therapists and occupational scientists, we begin our work by
centering ourselves in our own tradition and learning to view clients and
research participants through the powerful lens of occupation. It is only by
starting at this point and then examining the intersection with other concepts
and disciplines that we can make the unique contribution that occupational
therapy and occupational science have to offer – such as the ways
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occupations and their meanings function in the lives of adults with
schizophrenia.
There is also much more to be learned about the intersection of
occupation and hope. Other disciplines such as psychology and medicine,
have created much theory and research about hope. There is much for us as
occupational scientists and occupational therapists to learn about hope from
these theoretical and research aspects. We do, however, have a unique
contribution to make. These disciplines have researched and theorized about
hope as a mostly cognitive and belief based concept, rather than hope in the
doing and living - hope in occupation. As occupational science research and
occupational therapy practice have become more concerned with health and
wellness, it has become important to study the mechanisms by which
occupation impacts health. Since hope is one of the mechanisms by which
occupation can impact health, this intersection merits further study.
It is important to study and learn more about how hopes are embodied
in occupations. As we learn more about how occupations become the
vehicles that move hopes forward, and shape and are shaped by the hopes
they convey, we can better support and encourage our own and others’ hopes.
Healthcare providers are often faced with dilemmas of clients whose hopes
are considered unrealistic by medical staff. Research on hope and occupation
can help inform this debate. Knowing the potential power of hope and the
debate about false hope, in our practice as occupational scientists and
occupational therapists, we should be cautious in how we approach someone
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else’s hopes. We should spend more time listening to others hopes and
supporting them, helping them determine what is necessary to attain them
and find pathways to do so. In our work we should include such things are
the hope enhancing strategies developed by Lopez et al. (2004). In working
with these stragegies, the addition of the concept of occupation would only
make hope enhancing strategies stronger.
As we study and learn more about the intersections of hope and
occupation, and are better able to understand the hopes of those with whom
we work, it is very important to understand that barriers to someone
achieving his/her hopes are not merely personal but often societal and
structural. In understanding this, we begin to recognize the importance of
more than personal interventions to help a person attain their hopes. We
begin to see the ways knowledge brings responsibility. Just as I learned
much about the individual and intervention on a personal level as an
occupational therapist, occupational science has increased my knowledge of
barriers and issues at a societal level. This knowledge creates both the
possibility of intervention at a societal level and the onus to do so.
When a person with schizophrenia or some other diagnosis or issue
has difficulty attaining meaningful and sustainable employment, it is not
enough just to work harder in helping them find employment. We as
occupational therapists and occupational scientists must begin to address the
societal barriers that make finding such employment difficult. We must work
to see that issues of the disability system that serve as disincentives and
348
barriers to work are eliminated. Someone should not lose their healthcare
benefits if they return to full-time work when their job may not provide any
such benefits. Returning to work should not jeopardize the very medications
and mental health support that allow the possibility of returning to work.
Another area that requires societal intervention is at the level of
employment opportunities, for those with mental illness and others who are
economically and occupationally marginalized. When someone has difficulty
attaining employment because of stigma and prejudice associated with a
diagnosis or disease from which they suffer, it is incumbent upon us all to
ensure that we are educated enough about mental illness an other disorders to
make informed decisions and not reactionary ones. We who are practitioners
in healthcare in general and mental health in specific, have particular
responsibility to help educate others about the realities of living with mental
illness. Further, we as society bear a responsibility to see that all are afforded
opportunity for living wages. As occupational therapists and occupational
scientists, our field has sounded the call for meaningful work for all, a call for
occupational justice which we must heed if such a vision is to ever come into
fruition.
Finally, it would be useful to understand better how employment
programs impact participants’ overall occupational pursuits – not just their
work occupations. It would also be important to understand the relationship
between occupations other than work and pursuing employment. Since
employment programs like ETE have such importance in their clients’ lives,
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it is important to understand how employment programs are shaped by and
impacted by political decisions, policies, and funding. It is also important for
occupational scientists and occupational therapists to study how better to
influence these same political decisions, policies, and funding, and then with
such knowledge, begin to act.
In all these ways, occupational therapists and occupational scientists
can contribute to both better understanding and supporting individuals and to
improving the possibilities afforded by our society to those who are
sometimes left on the margins. We as occupational therapists and
occupational scientists have defined occupation as being about the “doing” of
activities. We have a long and rich history and tradition in studying, teaching
and improving the conditions for these acts of doing at the individual level.
If we bring to bear the same creativity, capability, resilience, and dare I say,
hope, to the issues of social transformation, we have every possibility of
creating the kind of occupationally just society that we have as yet only
imagined.
350
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Appendix A
Letter of Approval from ETE
Name Omitted
366
Appendix B
Appendix A
Diagram of ETE
D=Desk = Chair = Door
Table
D
D
D
D
D
Table
D
D
D
Bathroom
Bathroom
Table
Bob’s
Office
Mark’s
Office
Bobbie’s
Office
Kim’s
Office
Kitchen Area
Meeting Area
Computer
Workstations
Bonnie’s Desk
Reception
Area
D
367
Appendix C
ETE Good Service Checklist
368
Appendix D
Informed Consent – Revised 9-16-04
Title of Project: Occupation in the Lives of Adults with Schizophrenia: Creations of
Hope and Identity
Principal Investigator: Susan Stouffer
Department: Occupational Science
24-Hour Telephone Number: 323-766-6830
Purpose of the Study
You are invited to participate in a research study about the lives of adults with schizophrenia.
Through this research I will be studying how adults with schizophrenia work to create
meaningful lives and how this meaning is related to everyday activities or occupations.
Additionally I will study how this experience of trying to create meaningful lives is related to
hope and identity. You are invited to participate in this study because you are an adult with
schizophrenia who is living in the community. About 4 other adults will take part in this study.
Procedure
If you decide to participate in this study:
1. I will be spending time with you during some of your usual daily activities. I will be
interested in observing a variety of daily activities that are important to you and that you
enjoy. I would like to see you in these activities approximately 10-12 times over the period
of about 6 months. Each observation will generally last about 1-2 hours but may be
longer if the activity requires it. Some observations may be video-taped if you agree, so
that I can later review the video and analyze it.
2. I will be interviewing you approximately once a month over the course of about 6 months.
The interviews will be mostly unstructured though I will be asking you questions about
your background, your daily activities and experiences, and your hopes. These interviews
will take place at a location of your choice. Interviews will last approximately one hour.
Each interview will be audio-taped with your consent. The tapes will later be transcribed
and analyzed.
Risks
The risks and discomforts you could experience during this study are minimal. It is possible
that you might experience some discomfort during observations or interviews or upon
completion of this study. I will attempt to minimize any discomfort you might feel and will
respect your need to end an interview or observation if you want to, and will regularly allow
time to discuss how you are feeling about participation in this study.
Benefits
You may receive no direct benefit from participating in this study. However, information from
this study may be beneficial to occupational therapists and other mental health care providers
as they attempt to better understand this experience and assist people who have
schizophrenia.
369
Alternatives to Participation
An alternative would be not to participate in this study.
Confidentiality Statement
Every effort will be made to keep your personal information confidential. Instead of your
name, a pseudonym will be used, and other identifying information such as your age will be
disguised. All audio-tapes, video-tapes, transcripts, and notes that I write after observations,
will be stored in a locked file. Only my dissertation advisor, peer dissertation analysis group of
about 5 people, and I, will have access to this information. After the study is completed, these
recordings will be destroyed. The information from this study may be published in journals or
presented at conferences, but your identity will be kept strictly confidential. The only
exception to this confidentiality would be that as the researcher, I am required to report if I
suspect that someone is abusing you.
Offer to Answer Questions
Your participation will be supervised by me, Susan Stouffer, at 323-766-6830, who you may
contact with any questions or concerns regarding your participation. If you have any
questions regarding your rights as a study participant, you may contact the Institutional
Review Board Office at 323-223-2340. You will be given a copy of this form to keep.
New Information
During the course of the study, you will be informed of any new findings such as changes in
the risks or benefits resulting from participation in this research that might cause you to
change your mind about continuing in the study. If new information is provided to you, your
consent to continue participating in this study will be re-obtained.
Termination From This Study Without Your Consent
If you become ill or are unable to continue with this study, the researcher will attempt to
contact you to discuss your continued participation in this study. Should you become too ill to
continue with this study for an extended period of time and you are unable to discuss your
continued participation with the researcher, the researcher may be forced to end your
participation in this study. If this should occur, the researcher would attempt to notify you and
answer any questions at such time as you would be able to talk with her.
Voluntary Participation and Withdrawal Statement
Your participation in this research study is voluntary. Your decision whether or not to
participate will not interfere with your right to health care or other services to which you are
otherwise entitled and will not affect your living situation. You are not waiving any legal claims
or rights because of your participation in this study. If you do decide to participate, you are
free to withdraw your consent and discontinue participation at any time.
Injury Statement
In the unlikely event that you should require medical treatment from an injury as a direct
consequence of the research procedures described above, the financial responsibility for such
care will be yours.
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California Law Requires that you must be Informed About:
1. The nature and purpose of the study.
2. The procedures in the study and any drug or device to be used.
3. Discomforts and risks to be expected from the study.
4. Benefits to be expected from the study.
5. Alternative procedures, drugs or devices that might be helpful and their risks and benefits.
6. Availability of medical treatment should complications occur.
7. The opportunity to ask questions about the study or procedure.
8. The opportunity to withdraw at any time without affecting your future care at this
institution.
9. A copy of the written consent form for the study.
10. The opportunity to consent freely to the study without the use of coercion.
11. Statement regarding liability for research-related injury, if applicable.
Agreement
I have read (or someone has read to me) the information provided above. I have been given
the opportunity to ask questions and all my questions have been answered to my satisfaction.
I agree to have interviews with the researcher audio-taped.
I agree to have favorite activities that I choose, video-taped.
I agree to have photographs taken of objects/projects that I choose that are related to my
favorite activities (such as a bicycle, camera/photos or knitting needles/knitted sweater).
My signature below indicates that I have decided to participate having read the information
provided above.
Name of Subject Signature Date Signed
______________
Name of Witness Signature Date Signed
I have personally explained the research to the participant and answered all questions. I
believe that he/she understands the information described in this informed consent and freely
consents to participate.

Name of Investigator/Person Signature Date Signed
Obtaining Informed Consent (must be the
same date as
subject’s)

Abstract (if available)

Abstract This ethnographic study was conducted to better understand the roles and process of hope and occupation in the lives of adults with schizophrenia. During the course of several months, I conducted semi-structured interviews and participant observations with three men who had schizophrenia. I found that these three men distanced themselves from labeling associated with schizophrenia, preferring to be associated with their work and leisure occupations. They each had what some others in their lives considered to be high hopes. These hopes both shaped and were shaped by the occupations in which they engaged. In the face of criticism, each of them continued to pursue their hopes and revise them as necessary when they encountered obstacles. Despite debates in the hope literature about "false hopes," clients with schizophrenia would be better served by trying to understand their hopes, and helping them in the process of revising them and trying to attain them.

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Asset Metadata

Creator Stouffer, Susan Saylor (author)

Core Title Occupation in the lives of adults with schizophrenia: creations of hope

School School of Dentistry

Degree Doctor of Philosophy

Degree Program Occupational Science

Publication Date 07/26/2007

Defense Date 04/17/2007

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

Tag Hope,Mental Health,OAI-PMH Harvest,occupation,Occupational Science,schizophrenia

Language English

Advisor Neville-Jan, Ann (committee chair), Brekke, John (committee member), Jackson, Jeanne Marie (committee member), Mattingly, Cheryl (committee member), Zemke, Ruth (committee member)

Creator Email stouffer@usc.edu

Permanent Link (DOI) https://doi.org/10.25549/usctheses-m687

Unique identifier UC1225715

Identifier etd-Stouffer-20070726 (filename),usctheses-m40 (legacy collection record id),usctheses-c127-525442 (legacy record id),usctheses-m687 (legacy record id)

Legacy Identifier etd-Stouffer-20070726.pdf

Dmrecord 525442

Document Type Dissertation

Rights Stouffer, Susan Saylor

Type texts

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

Repository Name Libraries, University of Southern California

Repository Location Los Angeles, California

Repository Email cisadmin@lib.usc.edu