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LIFE SATISFACTION AMONG PEOPLE WITH
PROGRESSIVE DISABILITIES

presented by

ROY KUAN-YU CHEN

has been accepted towards fulfillment
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LIFE SATISFACTION AMONG PEOPLE WITH PROGRESSIVE DISABILITIES
By

Roy Kuan-Yu Chen

A DISSERTAION

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

DOCTOR OF PHILOSOPHY
Department of Counseling, Educational Psychology, and Special Education

2006

ABSTRACT
LIFE SATISFACTION AMONG PEOPLE WITH PROGRESSIVE DISABILITIES
By

Roy Kuan-Yu Chen

People with congenital disabilities do not necessarily react the same way to
disability as people with acquired disabilities (Smart, 2001). Despite the known
importance in rehabilitation outcomes, research on life satisfaction among people with
progressive disabilities remains minimal. The purpose of the present study was to provide
rehabilitation professionals with a better understanding of the impact of progressive
disability on the adjustment to disability and life satisfaction. Specifically, the study
investigated the relationships among life satisfaction, self-acceptance of disability, future
time orientation, hope, and Spiritual well-being in people with neuromuscular and
neurological diseases. A total of 228 individuals were recruited through the Muscular
Dystrophy Association and the National Multiple Sclerosis Society across the United
States. They completed questionnaires containing several scales measuring predictor and
outcome variables, as well as two open-ended reflective questions.

A series of regression analyses and an adapted phenomenological study were
performed to analyze quantitative and qualitative data, respectively. The combination of
future time orientation, spiritual well-being, hope, importance of religion, and acceptance
of disability explained 42% of the variance in life satisfaction. Likewise, hope, spiritual
well—being, levels of physical functioning, importance of religion, and future time

orientation explained 42% of the variance in self-acceptance of disability. Additionally,

the results revealed that life satisfaction was positively correlated with spiritual well-
being, hope, and self-acceptance of disability. Moreover, participants with higher levels
of hope also reported having higher spiritual well-being and self-acceptance of disability.
Although there was no relationship between future time orientation and life satisfaction,
future time orientation was negatively correlated with hope and self-acceptance of
disability. Interestingly, respondents with multiple sclerosis had higher scores on future
time orientation and were more future-oriented than those with muscular dystrophy.
Several important themes emerging from the qualitative study included fear of
uncertainties, lack of accessible transportation, hereditary diseases, and a here—and-now
mentality. Furthermore, participants reported a hindrance to establishing and maintaining
intimate relationships. The limitations to the study and implications for rehabilitation

practices and further research concerning progressive disabilities are discussed.

Copyright by
Roy Kuan-Yu Chen
2006

ACKNOWLEDGEMENTS

It is impossible to thank every person who crossed my path during my seven years
of doctoral study at Michigan State University. AS I reflect upon this amazing odyssey,
the first thing that I realize is how blessed I was by God to have met many wonderful
people, including my professors, students, classmates, friends, colleagues, bus drivers,
counseling clients, janitors, grocery store clerks, scholarship benefactors, and good
Samaritans, who lent me much appreciated helping hands during the long, snowy winter
seasons. More importantly, through their kindness and care I am constantly reminded to
remain humble before God, no matter how a high educational attainment I might achieve.

First and foremost, I would like to express my sincere gratitude to my major
advisor Professor Emerita Nancy M. Crewe, who selflessly stayed on the faculty years
after her retirement to ensure that I completed this dissertation. I am also indebted to my
supportive dissertation committee members: Dr. John J. Kosciulek, Dr. Michael J. Leahy,
Dr. Kimberly S. Maier, and Dr. Susan J. Peters. Each played an important role in my
work. I particularly am thankful to my first mentor Dr. Martin G. Brodwin at California
State University, Los Angeles. A big thank-you goes to Joyce Schultz for her support and
prayers during this process. I would be remiss if I did not acknowledge all the research
participants at the Muscular Dystrophy Association and the National Multiple Sclerosis
Society.

Lastly, I dedicate this dissertation to my paternal and maternal grandparents, for it
was their love and guidance that allowed me to pursue my dream under very difficult
circumstances. In their memory, I carry the inspiration to be a decent-hearted and faithful

servant to Lord Jesus Christ. Thank you and I love you all.

TABLE OF CONTENTS

LIST OF TABLES ............................................................................ viii

LIST OF FIGURE ............................................................................. x

CHAPTER 1

DITRODUCTION ............................................................................ 1
Statement of the Problem ............................................................ 4
Purpose of the Study ................................................................. 5
Research Questions .................................................................. 7
Definition of Terms .................................................................. 7
Delimitations .......................................................................... 8
Significance of the Study ............................................................ 9

CHAPTER 2

REVIEW OF THE LITERATURE ......................................................... 10
Life Satisfaction ...................................................................... 10
Religion and Spirituality ............................................................ 12
Acceptance of Disability ............................................................ 17
Future Time Orientation ............................................................. 27

CHAPTER 3

METHODOLOGY ............................................................................ 32
Design ................................................................................. 32
Participants ............................................................................ 33
Instruments ............................................................................ 32
Procedures ............................................................................. 36
Statistical Analyses .................................................................. 38
Qualitative Analyses ................................................................. 40

CHAPTER 4

RESULTS ...................................................................................... 42
Quantitative Findings ................................................................ 42
Qualitative Findings .................................................................. 60

CHAPTER 5

DISCUSSION ................................................................................. 78
Self-Acceptance of Disability ...................................................... 78
Satisfaction with Life ................................................................ 81
Future Time Orientation ............................................................. 84
Other Emerging Themes ............................................................ 85

vi

Limitations of the Study ............................................................. 87

Implications ........................................................................... 88
Conclusion ............................................................................ 93
APPENDICES ................................................................................. 94
Appendix A Self-Introductory Letter .............................................. 95
Appendix B Consent Form ......................................................... 96
Appendix C Recruitment Flyer ..................................................... 98
Appendix D Demographic Questionnaire ......................................... 100
Appendix E The Satisfaction with Life Scale .................................... 102
Appendix F The Hope Scale ........................................................ 103
Appendix G The Spiritual Well-Being Scale ..................................... 104
Appendix H The Future Time Orientation Scale ................................. 105
Appendix I The Acceptance of Disability Scale-Revised ....................... 106
REFERENCES ................................................................................. 108

vii

Table Number

1

2

10

11

12

13

LIST OF TABLE

Title of Table
Descriptive Statistics for Categorical Study Variables ...........
Descriptive Statistics for Continuous Study Variables ...........

Results of Regression Analysis with Demographics and
Background Variables Predicting Future Time Orientation

Results of Regression Analysis with Demographics and
Background Variables Predicting Acceptance of Disability

Results of Regression Analysis with Demographics and
Background Variables Predicting Life Satisfaction ...............

Correlations among Future Time Orientation, Spiritual Well
Being, Hope, Importance of Religion, Acceptance of
Disability, and Life Satisfaction .....................................

Results of Regression Analysis with Future Time Orientation,
Spiritual Well Being, Hope, Importance of Religion, and
Acceptance of Disability Predicting Life Satisfaction ............

Correlations among Hope, Spiritual Well Being, Physical
Functioning, Future Time Orientation, Importance of Religion
and Acceptance of Disability ........................................

Results of Regression Analysis with Hope, Spiritual Well
Being, Physical Functioning, Importance of Religion, and

Future Time Orientation Predicting Acceptance of Disability

Sample Coding for Romantic Relationships, With Quotations
F rom Participants ......................................................

Sample Coding for Becoming a Better/More Accepting
Person, With Quotations From Participants ........................

Sample Coding for Not Wanting Children, With Quotations
From Participants ......................................................

Sample Coding for Burden, With Quotations From Participants

viii

Page
50
53

54

55

56

57

58

59

60

63

63

64

64

14

15

16

17

18

19

20

21

22

23

24

25

26

Sample Coding for Employment Issues, With Quotations From
Participants .............................................................

Sample Coding for Caregiving, With Quotations From
Participants .............................................................

Sample Coding for Transportation Issues, With Quotations
From Participants ......................................................

Sample Coding for Planning for the Future, With Quotations
From Participants ......................................................

Sample Coding for Diminished Sexual Activities, With
Quotations From Participants ........................................

Sample Coding for Self-Esteem and Confidence, With
Quotation From Participants .........................................

Sample Coding for Modified Goals, With Quotations From
Participants .............................................................

Sample Coding for Inability to Sustain Employment, With
Quotations From Participants ........................................

Sample Coding for Being an Undesirable Intimate Partner,
With Quotations From Participants .................................

Sample Coding for Apprehensive of Future, With Quotations
From Participants ......................................................

Sample Coding for Disability and a Concept of Guiding Deity,
With Quotation From Participants ..................................

Sample Coding for Feelings of Loss, Sadness and Turmoil,
With Quotation From Participants ..................................

Percentage and Frequency of the Sampling Codes ...............

ix

64

65

65

66

66

67

67

67

68

68

69

69

70

LIST OF FIGURE

Figure Number Title of Figure Page

1 A model of acceptance of disability and employment status as 6
mediators of the relations among hope, level of physical
functioning, spiritual well-being, future time orientation and
life satisfaction .........................................................

CHAPTER 1

INTRODUCTION

“Are you satisfied with your life?” is an uncomplicated question that nevertheless
conceivably entails an infinite number of answers. At first glance an individual’s
response to this seemingly simple question might fall into the dichotomy of yes or no.
However, as we attempt to understand what life satisfaction means to people through
their own lens, we soon realize that no two people in the world would define it in the
same way, because life satisfaction has temporal, cultural, psychosocial, spiritual,
philosophical, contextual, and self-referential properties. For instance, suicide is perhaps
the most drastic and tragic form of expressing dissatisfaction in life. Nonetheless, most
people suffering from varying magnitudes of depression and unhappiness still go on with
their lives. This raises a pondering point: Is life satisfaction determined by expectations
or by experience? (Carr, Gibson, & Robinson, 2003).

Bioethicists and disability rights activists are known to hold divergent views
toward such disability-related issues as eugenics, reproduction rights, and stem-cell
research, which at times require legal interpretations from the judicial system to mediate
their differences (Reinders, 2000; Wendell, 1996; Wolbring, 2003). One controversial
bifurcating point pitting both camps against each other is their stance on the perseverance
of life against the will of the afflicted individual. Conflict in the ideologies of
fundamentalists and liberals can and has escalated to a full-scale legal battle. The stark
contrast lies in the argument as to who is entitled to decide when a life may be terminated

prematurely—God or the individual. In April, 1999, Dr. Jack Kevorkian was sentenced in

Michigan to two concurrent terms of imprisonment for his infamous role in abetting a 52-
year—old man who had amyotrophic lateral sclerosis (ALS, a neurodegenerative condition
better known as Lou Gehrig’s disease) to take his own life. This case attracts extensive
monitoring from both domestic and international news media in part because of the
public’s bitter split on its opinion of voluntary euthanasia and assisted suicide. However,
amid the debate over Dr. Jack Kevorkian’s fate, no one seems to be able provide a cogent
and irrefutable definition of quality of life pertaining to people with disabilities, terminal
illnesses, or chronic ailments.

The subject of disability in American culture has become a field of theoretical,
clinical and policy interest. Regarded as a taboo subject until recent years, disability now
engages a growing interest among human rights activists, academics, rehabilitation
professionals, and those responsible for the organization and delivery of rehabilitation
services. The conceptual and practical difficulties involved in assessing life satisfaction
among people with progressive disabilities have resulted in inadequate research into this
important area. The effects of inevitable physical and cognitive changes in the course of
life span make it even more difficult to interpret the changing status in quality of life.
Schou and Hewison (1999) criticize much of the life satisfaction research for retaining a
biomedical focus on behavioral change, and for its exclusion of vital features of the
experience of disability and chronic illness that are interwoven in the social,
psychological, spiritual, and institutional contexts of patients.

What exactly construes disability is also a hotly contested point that threatens the
unity of the disabled community. Deaf culture has always adopted the View that hearing

impairment and deafness are not deficits per se. Rather, deaf culture sees Sign language as

another form of communication. It is the failure on society’s part that hinders the full
participation in society by people with hearing impairment. Sound and Fury, which
received a 2001 academy award nomination for best documentary feature, depicts the
bitter division among three generations of both hearing and deaf family members over the
use of cochlear implants.

In an interview with the Australian Broadcasting Corporation, Christopher Reeve,
a staunch proponent of the use of embryonic stem cells and of therapeutic cloning,
revealed his immense unhappiness with spending his life in a wheelchair (Goggin &
Newell, 2004). It is a bewilderment to many wheelchair users why someone of his status
who has the access to abundant resources including money, media attention, social
support, strong family ties, and the most advanced medical treatments has little
satisfaction with his life.

Study of life satisfaction is a formal attempt to include the rehabilitation services
clients as well as the rehabilitation services providers in an effort to affect greater
rehabilitation outcomes. Variables that have been linked to higher life satisfaction include
age (Mehnert, Krauss, Nadler, & Boyd, 1990), employment status (Aquino, Russell,
Cutrona, & Altmaier, 1996; Mehnert et al., 1990; Viemero & Krause, 1998), income
(Boschen, 1996; Mehnert et al., 1990; Viemero & Krause, 1998), marital status (Mehnert
et al., 1990), future time orientation (Prenda & Lachman, 2001), age at onset of disability
(Mehnert et al., 1990). People with congenital disabilities do not necessarily react the
same way to disability as do people with acquired disabilities (Smart, 2001). In recent
years the survival rates for disabilities such as traumatic brain injury and spinal cord

injury have improved markedly due to rapid advances in treatment technology and

pharmaceutics. Despite its known importance to rehabilitation outcomes, research on life
satisfaction among people with incurable progressive disabilities such as muscular
dystrophy (MD), multiple sclerosis (MS), and amyotrophic lateral sclerosis (ALS)
remains minimal.

Very few studies have examined the association between future time orientation
and acceptance of disability. “Future time orientation is inherent in a person’s need and
motive system” (Gjesme, 1979). An understanding of how people with disabilities
envision their present and future may provide rehabilitation counselors and their disabled
clients with a sound basis for developing effective strategies for achieving desirable
employment goals. The conception of the future influences an individual’s selection and
pursuit of goals (Fung & Carstensen, 2004; Kamiol & Ross, 1996; Zimbardo & Boyd,
1999). Psychologists have called for more research on time perception, which is an
integral part of human motivation (Carstensen, Issacowitz, & Charles, 1999). It is
unknown how time perception affects people whose outlooks on life are affected by
incurable progressive disabilities.

Statement of the Problem

A substantial amount of research has been conducted on the correlates of life
satisfaction among people with disabilities (Boschen, 1996; Boswell, Dawson, &
Heininger, 1998; Cotton, Levine, Fitzpatrick, Dold, & Targ, 1999; Coyle, Lesnik-Emas,
Kinney; 1994; Heckman, 2003; Hinckley, 2002; Nosek, Fuhrer, & Potter, 1995).
However, thus far relatively few psychological studies have been carried out that focus
specifically on the progressive disabilities group. Low incidence rates of neuromuscular

diseases and neurological disorders, compared with more common developmental

disabilities, mental health illness, and HIV, contribute to the scant attention they receive
from rehabilitation researchers and practitioners (Chen, 2001). Psychology literature is
also replete with studies using hope theory to examine people’s inner strength and their
outlook on life (Chang, 2003; Chang & DeSimone, 2001; Danoff-Burg, Prelow, &
Swenson, 2004; Horton & Wallander, 2001; Kwon, 2000; Snyder, Lopez, Shorey, Rand,
& Feldman, 2003; Snyder, Shorey, Cheavens, Pulvers, Adams 111, & Wiklund, 2002).
None of these studies involve participants with progressive disabilities either.
Purpose of the Study

The purpose of the present study is to test a theoretically based multidimensional
model of life satisfaction. The model addresses ways in which cognitive, physical,
spiritual, and psychological variables mediate acceptance of disability and employment
status.

In this proposed model of life satisfaction, constructs believed to have influences
on a person’s level of perceived satisfaction in life include hope, acceptance of disability,
future time orientation, level of physical functioning, importance of religion, and spiritual

well-bein g.

 

Demographic

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Variables
Hope
Spiritual Well-
: Being Acceptance of
Disability
Life
// Satisfaction
Physical ' i
Functioning
Employment
Status
_ Future Time
' Orientation
Importance of

 

 

 

 

 

 

Religion

 

Figure 1. A model of acceptance of disability and employment status as mediators of the
relations among hope, level of physical functioning, spiritual well—being, future time

orientation, importance of religion and life satisfaction.

Research Questions
The following are the primary inquiry areas.

1. Which demographic and background characteristics (i.e., age, sex, marital
Status, educational attainment, race, type of disability, employment status,
level of physical functioning, and duration of knowledge of disability) are
predictive of fiiture time orientation, acceptance of disability, and life
satisfaction?

2. Are future time orientation, Spiritual well-being, hope, importance of
religion, and acceptance of disability predictive of life satisfaction?

3. Does acceptance of disability or employment status mediate the
relationship between future time orientation and life satisfaction?

4. Can acceptance of disability be predicted by hope, spiritual well-being,
level of physical functioning, importance of religion, and future time
orientation?

Qualitative inquisition of the study is guided by the two open-ended questions in the
demographic questionnaire.

1. In what ways does progressive disability affect the pursuit of personal
goals such as employment and romantic relationships?

2. How does the uncertainty of progressive disability influence life
perspectives?

Definition of Terms

Progressive Disability: Types of disabilities which are characterized by their
unpredictable course of gradual loss of physical function and/or cognitive function. Some
prominent examples are MD, MS, and ALS.

Acceptance of Disability: The extent to which a person accepts his or her inability
to perform certain activities of daily living resulting from the loss of the use of his or her
physiological and cognitive function.

Physical Function: The physiological function within a human body that enables
a person to perform activities of daily living such as walking, lifting, standing, and
squatting.

Hope: Positive expectations for goal attainments. Hopeful thinking requires the
perceived ability to envision feasible ways to accomplish predetermined objectives,
sustained by will power.

Future Time Orientation: The cognitive construct that impacts an individual’s
propensity to work for a distant goal (Gjesme, 1983a; Nuttin, 1985).

Religiosity: Transcendence in views toward life through the belief in God or a
religion.

Employment Status: The category that describes the type of an individual’s
remunerative work, e. g. full-time, part-time, unemployed, retired, and volunteer.

Life Satisfaction: An individual’s subjective appraisal of his or her own position
in life with respect to domains such as social, health, spiritual, and financial status.

Delimitations

There are many types of progressive disabilities. For the scope of the present
study, prospective participants will only include individuals with MD, MS, and ALS who
are at least eighteen years of age.

Significance of the Study

This study will provide rehabilitation counselors with a better understanding of
the impact of progressive disability on the adjustment to disability and life satisfaction.
The findings from this study may help identify and dispel the stereotypes that society has
in regard to individuals with disabilities that it has toward people of color and same
gender sexual orientation. By confronting these issues, researchers and service providers
in the field of rehabilitation can acquire the insight necessary to improve knowledge of
disability.

The next chapter includes a discussion of the literature bearing on conceptual and
methodological issues related to this study. Although disability is an individualized
experience, this study will generate ideas to help rehabilitation professionals and their

clients with disabilities in increasing life satisfaction.

CHAPTER 2

REVIEW OF THE LITERATURE

This chapter provides an overview of literature relevant to the present study,
focusing specifically on the four research questions stated in the previous chapter.
Themes presented will include (a) life satisfaction, (b) acceptance of disability, (c) future
time orientation, ((1) spirituality, and (e) hope.

Life Satisfaction

Life satisfaction is a key construct that has been frequently employed in
psychosocial, medical, and theological studies to evaluate an individual’s perceived well-
being. Standards for happiness and quality of life vary in the contexts of culture, health,
spirituality, and wealth accumulation. The considerably higher prevalence of suicide rates
in developed nations illustrates the complexity and limitation of understanding life
satisfaction from one single perspective. Pavot and Diener (1993) posit that the affective
and cognitive components of subjective well-being form the basis of evaluative criteria
for people to compare their own happiness to that of other people. Life satisfaction thus
involves a judgmental process because people assign different weights to the
aforementioned contexts.

Individuals must also demonstrate long-term stability in their global assessment of
their own life circumstances in order for their life satisfaction to be meaningfully
measured. There is an assumption that people choose relevant and salient information
from their lives to make meaning of a new situation (Diener & Lucas, 1999). Often

people repeatedly rely on memories of past emotional experiences such as work, social

10

relationships, and academic performance to form successive life satisfaction judgments
(Schimmack, Diener, & Oishi, 2002). The result of this cognitive regurgitation of
pertinent information is a self-perceived well-being that remains quite stable.

In a cross-sectional study of 75 patients two years or more after a severe traumatic
brain injury, Mailhan, Azouvi, and Dazord (2005) found no linear relationships between
life satisfaction and severity of disability. The reported subjective quality of life in
participants with severe disabilities did not differ significantly from those with less severe
disabilities. A similar study of 45 individuals with a variety of physical disabilities who
were receiving services from independent living centers also corroborates that disability
may not be the only determinant that influences one’s perceived well—being (N osek,
Fuhrer, & Potter, 1995).

Informed Desire Theory

Philosophers have debated whether the nature of human well-being is subjective
or objective (Varelius, 2004). It is helpful to use the informed desire theory to analyze
what the connotations of well-being are to a person. Griffin (1986) contends that
enhancement of well-being is contingent upon satisfying the goals that informed people
would desire to pursue. In other words, one ranks preferences of a set of goals to attain.
Another facet of the informed desire theory is that one’s sensibility is funneled through a
vast store of practical information that exists ubiquitously in daily life. The subjective
well-being of a person who uses a wheelchair is likely to be more affirmative if he or she
engages in a leisure activity that does not preclude his or her full participation, such as
playing musical instruments, instead of sulking in self-pity for not being able to scale the

highest peak in the world.

11

According to De Ruyter’s (2004) interpretation of personal flourishing, humans
will burgeon into a state of holistic metamorphosis if they truly feel they are flourishing.
Put simply, human thriving occurs only if people believe they are actually flourishing. A
person’s mental states are attributable to how well off he or she is. For instance, a novice
music student’s own acknowledgement of well-being elevates as his or her mastery of
musical instruments increases. But this raises the question of how appropriate hedonism
is as an indication of a high level of well-being. Tiberius (2004) suggests that humans
possess moral capacities to reason out a cogent, logical, moral approach to making clear
distinctions between pleasant and unpleasant contentment. The nature of well-being is
thus objective rather than subjective because it is completely up to that person to
delineate the premise of life satisfaction. This is in contrast to Griffin’s viewpoint of
informed goal seeking.

Religion and Spirituality

Sigmund Freud and Albert Ellis are two prominent psychologists who denounced
the use of religion and spirituality for the purpose of research. Lack of concurrence on the
definitions on religion and spirituality makes it hard to use them as quantifiable,
operational constructs. In order to facilitate the scientific study of religion, Koenig,
McCullough, and Larson (2001) selected several criteria to distinguish religion from
spirituality.

“Spirituality is about a person’s beliefs, values, and behavior, while religiousness
is about the person’s involvement with a religious tradition and institution.” (Spilka,
Hood, Hunsberger, & Gorsuch, 2003, p. 9). The terms religion and spirituality have

become increasingly synonymous in recent years. Religion plays a functional role in the

12

study of human behavior as it unveils how faith operates in an individual’s world (Spilka,
et al., 2003). Scientific comprehension of the impact of religion on cognition and
perception departs from the way traditional hermeneutic analysis of religious doctrines
makes meanings out of life events.
Religion As an Asset and As a Liability

Wulff (1996) describes the paradoxical nature of religion using the study of
religion to interpret how and why human beings act and conduct themselves in certain
ways. He asserts that religion is both an asset and a liability in orienting oneself toward
other people and the universe. As an asset, religion inspires, provides insights to self-
actualization, fosters the growth of hope and wisdom, and transforms narcissism into the
pursuit of perfection. On the other hand, religion is a liability that inhibits the infinite
potentialities in people. Traditional religious values have throughout history acted to
strictly control and determine the norms in society by reinforcing desired behaviors. The
Oedipus complex, according to Freud, is the root of human being’s eternal search for the
father-child bond with a ubiquitous higher being when facing unpredictable situations.
Some psychologists and social scientists deem this mystical psychological phenomenon
as irrational and pathological and thus not worthy of scientific research.
Implications for Bifurcation of Religion and Spirituality

Researchers have in recent years used religion and spirituality to link to mental
and physical health (F aull, Hills, Cochrane, Gray, Hunt, McKenzie, & Winter, 2004;
Kim, Heinemann, Bode, Sliwa, & King, 2000; Powell, Shahabi, & Thoresen, 2003). But
the rapid growth of such studies has created confusion in the conceptualization and

measurement of religion and spirituality (Hill & Pargament, 2003). The increasing use of

13

the terms religion and spirituality as interchangeable by some researchers is drawing
criticism from others who attribute separate and distinct meanings to each term (Makros
& McCabe, 2003). Religion is now routinely used to refer to a belief system of organized
religious practices (Wulff, 1996) whereas spirituality encapsulates the personal,
emotional, and subjective expressions of religiousness (Koenig etal., 2001). Leading
scholars in theology research have spoken out about the dangers of polarizing religion
and spirituality. Pargament (2002) argues that bifurcation of these two highly correlated
constructs could lead to the possibility that the helpful and harmfiil effects of each on an
individual’s well-being might be overlooked. Moreover, findings based on interviews,
surveys, and questionnaires may be subjected to important concerns about whether the
responses are generated within spiritual or religious contexts because most people
untrained in theology, sociology, and psychology are unable to distinguish clearly
between these phenomena (Marler & Hadaway, 2002).

Notably, between 67 to 74 percent of American Christians consider themselves as
both religious and spiritual persons (Scott, 2001; Zinnbauer, Pargament, Cole, Rye,
Butter, Belavich, Hipp, Scott, & Kadar, 1997). From researchers’ perspectives, time and
effort spent on needless duplication in concepts and measures of religion and spirituality
could be better directed to other research interests (Hill & Pargament, 2003). In an
attempt to be more inclusive of these two terms, Thoresen and Harris (2002) coin the
term Religious/Spiritual Measures to denote measurement of these two constructs co-

concurrently.

l4

Theory of Religious Coping

In his much-quoted book The Psychology of Religion and Coping, Kenneth
Pargament (1997) provides several theoretical approaches to explicating the role of faith
in relation to coping behavior. The process of coping with a negative life event begins by
mobilizing an orientation system to appraise a circumstance-specific meaning. This
orientation system, comprising religious beliefs and practices, serves as a useful resource
for people in distress to counter stressful situations. A person with an acute spinal cord
injury may at the onset ask what the unanticipated accident means to himself or herself.
Whether the incident is interpreted as a threat or an opportunity for personal growth
depends on the individual’s existential schema. In the next step of the coping process the
individual prays to God to be restored to his or her premorbid health. However, some
researchers warn that prayer can be dysfunctional if the individual waits passively for a
miraculous healing instead of resorting to immediate medical help (Spilka, et a1. (2003).

Pargament (1997) posits that people deploy problem-focused coping when an
adverse situation is deemed changeable and emotion-fodused coping when it is not
modifiable. A sense of the situation’s significance and a composite of values, beliefs, and
feelings determine which coping mechanism is appropriate to activate. Disability,
whether congenital or acquired, invokes mysticism as it drapes over the life of the
afflicted individual. Although genetic counseling, biopsy, magnetic resonance image, etc.
can help determine the etiology of a disease or disorder, they cannot explain the question
why one is selected to become the victim of tragedy while another is not. The coping
function of religion allows people who are facing a difficult situation to make sense out

of it. Pargament further asserts that comprehending a tragic event through religion gives

15

meaning and helps regulate emotion to facilitate successful coping and adjustment. He
delineates three categories of religious coping styles: (3) the self—directing approach, (b)
the deferring approach, and (c) the collaborative approach. In essence, the first approach
seeks to resolve problems without God; the second approach waits for Divine
intervention; and the third approach combines the efforts of the individual and God to
work out crises.

Spiritual Well—Being

Ellison (1983) suggests that Spiritual well-being has both a religious component
and a psychosocial component. In other words, there is a sense of comfort in connection
with God as well as an experiential understanding of life purpose and life satisfaction. In
a study of 120 college students, personal spirituality was correlated positively to
satisfaction with life (Fabricatore, Handal, & Fenzel, 2000). Finding a sense of life’s
meaning reverses the shame often firmly internalized by people with disabilities. Once
the stigma that shackles self-worthiness is broken by forging a new self-identity, the
individual with a disability is no longer bogged down by humiliating looks and fear of
rejection. More importantly, transcendence over limits on bodily functions, mental
deficits, and cognitive impairments leads to inner peace, a quintessential property of
spiritual well-being.

God has always been viewed as a source of both comfort and resentment for
people whose lives are struck by tragedy. No consensus on whether God is merciful or
cruel will ever be reached among the Jewish survivors of the Auschwitz concentration
camps or the victims of the Indian Ocean tsunamis. Nevertheless, spirituality as a coping

method is frequently deployed by people with disabilities and chronic illness to help them

16

look to a brighter future. To test the hypothesis that strong religious and spiritual beliefs
are positively correlated with both cognitive and affective perceptions of subjective well-
being, Daaleman (I999) administered the Spiritual Well-Being Scale to 80 outpatients at
a university-based family-practice center. His findings support the notion that patients
who are apt at constructing an existential meaning for life usually have a proclivity to
incorporate the concept of a loving God in their schema.
Acceptance of Disability

Disability acceptance is an ongoing experiential phenomenon people with
disabilities undergo in their lives. Adjustment to disability has been linked to the
individual’s perception of disability, and is shaped by personal beliefs, family support
(Alston, McCowan, & Turner, 1994; Elliot, Shewchuk, & Richards, 1999), perceived
social attitude (Li & Moore, 1998; Prince & Prince, 2002), cultural values (Chen, Jo, &
Donnell, 2004), religious orientation (Alston, McCowan, & Turner, 1994), and
spirituality. Persons with disabilities and their non-disabled counterparts differ greatly on
what constitutes a disability. In a study to assess the attitude toward individuals with
disabilities in the workforce, Popovich, Scherbaum, Scherbaum, and Polinko (2003)
discovered substantial differences in non-disabled workers’ beliefs about what constitutes
a disability and the definition of disability as per the Americans with Disabilities Act
(ADA). Although the participants were accepting of mobility and sensory disabilities,
they clearly did not believe alcoholism and schizophrenia are disabilities when in fact
they are recognized to be disabilities by the ADA.

In general, a person is said to have come to terms with his or her new disability

identity after activating both acknowledgement of and adjustment to the disability (Martz,

17

Livneh, & Turpin, 2000). In a sample of 1,266 people with a variety of disabilities, Li
and Moore (1998) correlated the nature and manifestation of disability with disability
acceptance. Participants with congenital disabilities are more likely to be accepting of
their own disabilities than are participants with acquired disabilities. Facing stigma and
discrimination, people with less visible disabilities are under tremendous social pressures
to “pass” as individuals without disabilities.

Hahn (1988) disagrees with the prevalent belief that acceptance of disability is
achieved solely through an internal process. He argues that while the internal locus of
control might play an important role in motivating an individual to overcome the
challenges accompanied by a disability, rehabilitation professionals sometimes fail to see
how both functional limitations and social attitudes could stall the reconfiguration
process of a new self-concept. Martz et a1. (2000) surveyed individuals with disabilities
to determine if differences in disability acceptance existed between individuals with
internal and external loci of control. They found better adjustment to disabilities among
those with an internal locus of control than among those with an external locus of control.
Confusion by rehabilitation professionals and their clients with disabilities over what
contributes to satisfactory adaptation is compounded by an inundation of contradictory
studies on acceptance of disability. For instance, there are positive correlations between
acceptance of disability in people with acquired brain injuries and their quality of life
(Snead & Davis, 2002). Disability acceptance is also reported to be negatively associated
with perceived discrimination (Li & Moore, 2001), which in turn increases illicit drug use

and practice (Moore & Li, 1998).

18

An unrelenting focus on the loss of physical function and on a sense of
worthlessness is not unusual for persons with disabilities. Developing a positive image of
self presents a rather difficult psychological goal to attain for many people with
disabilities. Ayrault (1997) notes a widely mistaken approach in attempting to counsel
individuals with disabilities to readily accept their disability status. In contrast to
traditional rehabilitation psychology literature, denial of disability has proven to be an
effective coping strategy (Olney, Kennedy, Brockelman, & Newsom, 2004). Those who
accept their disabilities report more mental health problems than do those who reject their
disability status. Moreover, recent research also indicates conflicting findings (e. g. Li &
Moore, 2001) with regard to gender in reaction to disability. Women with disabilities
appear to have a lower level of disability acceptance compared to their male counterparts
(Hampton & Crystal, 1999).

Somatopsychology

In their classical writing on psychosocial adjustment to disability, Dembo,
Leviton, and Wright (1956) liken acceptance of disability to acceptance of loss. The
degree of acceptance of loss is contingent upon a process of value changes. They suggest
the following behaviors as indicative of a desirable adaptation to disability: (a) focus on
the residual abilities and strengths rather on the deficits, (b) undertake personal
responsibility in mapping out one’s life course and establish preferred goals, (c)
recognize any personal achievement accomplished, (d) avoid expatiating on negative life
experiences and downbeat thoughts, (e) decrease the scope of restrictions in the physical

and social environments, and (f) partake of and take pleasure in cherished activities.

19

Building on the earlier writing of Dembo eta1., Wright (1983) further posits four
value changes to militate devaluation of self and to broaden acceptance of loss, which
include (a) enlargement of the scope of values, (b) subordination of physique relative to
the other values, (c) containment of disability effects, and (d) transformation of
comparative—status values into asset values. She regards shifting away from the mourning
of a presumed loss of physical function as critical to finding new meanings in life during
the phase of enlargement of the scope of values. The lessening emphasis on body image
permits the person with a disability to construct a heightened self-concept by augmenting
the relative weight of certain values such as intelligence, charisma, and confidence over
other values like dexterity and athleticism. Containing disability effects alludes to
delimiting the spread effects of functioning losses. In other words, the impacted area
(e.g., amputation of an arm) and the unaffected area (e.g., friendliness) must not be
frivolously lumped together. Disability should be seen as a possession of rather than as a
characteristic of an individual. For example, the semiotic descriptor of “a learning
disabled person” is problematic in the sense that an individual’s difficulty in processing
information has become a characteristic and the descriptor fails to appreciate the
wholeness of a person. A deleterious outcome of allowing learning disability to be
portrayed as the central and sole characteristic of that person is that it selectively
overlooks the familial, vocational, and social roles he or She may assume.

According to Davis (1997), the application of statistical science in the form of
political arithmetic during the late nineteenth century gave an impetus to the growing
hegemony of normalcy. Implicitly, this myth precludes any variant from the ideal body

image. Thus, a person of a short stature is assigned to an inferior comparative-status

20

compared to a person of a tall frame. When the worthiness of an individual is arbitrarily
devalued by preconceived norms, the process of adaptation to the disability is made more
difficult. Reframing disability requires the transformation of comparative-status values
into asset values (Wright, 1983). Put simply, the person is perceived in a more positive
way only when appraisal of asset values shifts its focuses to what one can do instead of
what one cannot do.
Stigma Incorporation Theory

DeLoach and Greer (1981) draw on psychodynamics stigma incorporation to link
the relationship between self-concept and disability acceptance. Stigma is the social
disgrace rendered onto an individual who is considered to have deviated from the norm,
be it behaviorally, aesthetically, culturally, etc. The stigma incorporation theory purports
that adjustment to a disability will take place only after a lucid self-state, comprising
appraisal of one’s own and others’ perception of the disability, has been conceived. This
theory has three components: (a) stigma isolation, (b) stigma recognition, and (c) stigma
incorporation (DeLoach & Greer, 1981). People in general prefer to be in control of their
own lives. The onset of a disability, regardless of its severity, can arouse tremendous
anxiety and stress in individuals as they are forced to figure out how to best cope with the
unexpected. The process of stigma isolation revolves around the continued manifestations
of denial and repression. By isolating the stigma from the self-state, one is presumably
able to abate the occurrence of frequent and intense disability-related stress. As one
enters the phase of stigma recognition, one first comes to grasp the implications of having
physical limitations and then surveys task-oriented strategies to resolve new life

challenges. To reach the stage of stigma incorporation, one must discern both the positive

21

and negative aspects of living with a disability. The disability no longer looms in the
foreground of a person’s life as the perceived stigmatizing conditions subside
concomitantly with one’s new self-concept (Ososkie & Schultz, 2003).
Disability T ranscendence Theory

Acceptance of disability requires embarking on a lifelong process of
acknowledging disability. This process is affected by one’s continued personal, cultural,
spiritual, physical, intellectual, and emotional revolution (Vash, 1994; 1981). Disability
Transcendence Theory (Vash, 1981) puts forward a model that embraces disability as an
opportunity for psychological development and spiritual growth. Transcending disability
implies tapping into the innermost consciousness to move beyond disability-related
constraints imposed by functional abilities, societal expectations, personal perspectives,
and emotional reactions. Vash explains that the grth experience is catalyzed by three
levels of acknowledgement of disability: (a) recognition of the facts, (b) acceptance of the
implications, and (c) embracing the experience. At the first level the individual
recognizes the inherent negative valence in disability. However tragic the disability might
look, one must learn to live with it to move on with life. At the second level of disability
acknowledgment, the individual views disability as an inconvenience of neutral valence
that can be overcome. The metamorphosis of a new self emerges as bitter brooding
resulting from the sense of loss of physiological function starts to subside. As a
consequence, the implications of the disability are imbued with a chosen way of life. The
individual operating from the third level embraces disability as a chance to attain self-
actualization. Disability, regarded as a positive valence, motivates the individual to

extract a new meaning in life by turning potential adversity into potential opportunity.

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Philosophy of Existentialism

Viktor F rankl, a Vienna born psychiatrist who survived the Nazi concentration
camps, is credited with applying existentialism to searching for meaning and purpose in
life, especially in one who is in dire and despondent circumstances (Corey, 1996;
Ososkie, 1998; Ososkie & Schultz, 2003). Neurotic reminiscence of the before injury
lifestyle and obsessive contemplation of the etiological origin of a hereditary genetic
defect are the antithesis of existential thinking. The constantly evolving nature of the
existential approach requires the individual to accept the responsibility for the
consequences of a choice made. One’s destiny takes the path of the chosen options. As
Corey (1996) puts it, “facing existential anxiety involves viewing life as an adventure,
rather than hiding behind securities that seem to offer protection” (p. 179). Refusal to
change for the better, arising from making poor excuses and blaming others, impedes the
formation of a new self-identity. Instead of posing the question of why a tragic event has
befallen oneself, an existentialist would try to construe a sense of meaning out of the
present predicament. From a rehabilitation counseling perspective, people with
disabilities are to be encouraged to explore deep human experiences so that the
conception of a meaningful existence in relation to a world that highly stigmatizes
disability is feasible.

The development of a person’s capability to cope with physical suffering and
mental anguish culminates in a successful search for a new meaning in life (Frankl,
1984). Contentedness and happiness will come to an individual who seeks them. The

central tasks of change fall squarely on the shoulders of persons with disabilities. As

23

such, finding meaning in life with a disability lays the foundation for disability
acceptance from an existential standpoint.
Livneh ’s Unified Approach to Adaptation Process

In an attempt to synthesize a multitude of disability acceptance theories, Livneh
(1991) carried out an extensive literature review of over 40 reaction to disability models
and presents a unified model for conceptualizing the process of adjustment to physical
disability. This non-static adaptation process consists of five interwoven temporal stages:
(a) initial impact, (b) defense mobilization, (c) initial realization, (d) retaliation, and (e)
reintegration; it is deemed a prerequisite for a successful transition from non—disabled
status to a new disability identity. The initial impact stage is characterized by feelings of
shock and anxiety. Presumably, the individual suffers from severe shock following the
occurrence of a traumatic situation or a life-threatening situation. Uncertainty about what
changes an unfamiliar physical or functional impairment might entail often trigger such
acute emotional symptoms as confused thinking and cognitive flooding (Livneh &
Antonak, 1997) which lead to enormous anxiety. The main feature of the defense
mobilization stage is refusing to acknowledge the disability and its impact. To cope with
the initial strain of disbelief, the affected individual mobilizes psychological defenses in
hope of bringing some sense of orderliness to a world that is seemingly spinning out of
control. In this phase of the adaptation process, the person with a disability might first
find himself or herself trying to bargain with God or a higher spiritual being to seek a
second chance in life. The promise to adhere to high moral standards is made in

anticipation for an exchange for a reversal to the previous able-bodied physical state.

24

When the much-expected immediate recovery fails to materialize, denial of disability
soon replaces bargaining.

Denial of disability involves a string of long-term suppressions of the altered body
image as well as the reduced physical functioning. It implies a subconscious yet futile
attempt to block any reminder of the reality. The malleable human mind is usually very
cognizant of the self and its surrounding. In the third phase of the adaptation process, the
person with a disability starts gradually to sort out information regarding what awaits in
the future. Typically, the mourning of a lost physical function is accompanied by a bout
of depression that is either brief or deep depending on the individual’s personality,
network of support, and severity of the disability. Self-directed resentment is another
phenomenon frequently observed in the stage of initial realization. For example, a person
with spinal cord injury may internalize the guilt for his or her indulgence in high-risk
behaviors such as skydiving and bungee jumping. In the fourth stage, retaliation, a person
with a disability replaces self-blame with outward hostility. The feelings of antagonism
for the onset of a physical impairment are directed at external events, objects, and people.
For instance, a blind person may attribute the loss of sight as a punishment by God for his
or her parents’ transgression or as an injustice done at the hands of the enemies in war.
Put simply, the disabled individual is inculpable of the personal tragedy.

To complete the final phase of the adaptation process, reintegration, one must
journey through three cognitive substages, i.e. acknowledgment, acceptance, and
adjustment. Acknowledgement takes place only when the individual recognizes the
economic, vocational, personal, familial, social, and physical ramifications of the

disability (Livneh, 1991). This reorganization of schema is critical to assist with the

25

acceptance of a changed body image, which engenders the creation of an entirely new
disability identity. Healthy adjustment to a disability is feasible only if the person
concentrates on the repertoire of his or her remaining Skills and strengths, rather than
focusing on the deficit areas.

Although disability acceptance theories can Shed light on the mental turmoil
persons with disabilities may have to endure, several caveats should be noted when
applying these theories to the rehabilitation practices. People with disabilities whose
recoveries do not proceed in accordance with the clinically hypothesized stages are
oftentimes labeled as pathological or deviant (Vash, 1994). Olkin (1999) criticizes the
adjustment theories used by psychologists and rehabilitation professionals for failing to
evaluate the progress within the sociocultural milieu of their clients with disabilities. She
points out several theoretical and empirical flaws embedded within the framework of
stage models of response to disability. First, the human mind is extraordinarily complex
and it is highly improbable for two persons to adapt to a disability in the same fashion.
Likewise, the assumption that an individual ought to go through a sequential series of
steps to reach the goals of successful adjustment is both erroneous and overly simplistic.
Second, findings drawn from small samples of participants in the hospital and in
rehabilitation settings might not withstand stringent validity tests. Researchers cannot
remain objective observers if they hold a pathogenic view of their subjects, and values
and beliefs of people with disabilities are not taken into consideration. Third, the
variations in the psychological states among people who experience depression and anger
make it nearly impossible to quantify an appropriate length of this stage. Lastly, stage

models of response to disability do not elucidate why some people with disabilities

26

display positive outlooks on life despite bypassing certain phases in the adaptation
process.
Future Time Orientation

The exact origins of the concept of time is an issue that has drawn research
interest among anthropologists, scientists, theologians, and historians, but they have yet
to arrive at a consensus as to when and how time is quantified. The first indication of
tasks being performed in a loosely structured time frame can be seen in primitive
nomadic men who hunt and gather during the day and rest at night. The Biblical notion of
a God who creates the world and rests on the seventh day further demonstrates that
people have both cyclical and linear views of time. One might argue that human beings
are not the only specie in the animal kingdom that has the ability to perceive time. The
migration of caribous across the tundra and the hiatus of polar bears in wintry months
appear to reflect a sense of time. But human beings are set apart from animals by time
orientation, which requires complex cognitive skills to think in abstract forms of past,
presence, and future.

The human brain is a work of wonder. It can store, retrieve, disseminate, and
synthesize plethora of information with marvelous ease. Cognizance of time orientation
takes place when either an actual or an imagined incident is being processed in reference
to a time frame (Cottle & Klineberg, 1974). To illustrate this point, let us consider two
possible reactions of a person who has just been diagnosed with degenerative retinitis.
Jogging down memory lane to reflect on his or her sighted days is a reaction that is in the
mode of past time perspective. Projecting a new self-image of being blind in the near

future is in the mode of future time perspective. Time orientation thus confers a sense of

27

reality upon an event. To deal with uncertainty, persons with progressive disabilities
envisage their future based on what they would experience if they actually found
themselves in those uncertain scenarios.

Models of Time Orientation

Seeking a new meaning is actually future-oriented (Ososkie, 1998). The confusion
in defining time orientation is evident in the proliferation of divergent models proposed
by researchers and scientists. Boris (1994) conceives a model of time orientation based in
the discipline of psychiatry. He posits that time has no dimension and therefore cannot be
measured. Stated differently, if time existed, it might move in various unpredictable ways
like arrows because we cannot tell whether the psychological state of mind and the
physical state of being are framed by time or vice versa. Time seems to drag its feet when
college students must sit through a boring 90-minute lecture that hardly keeps their
interest and excitement. On the other hand, the time spent watching an entertaining 90-
minute movie with a boyfriend or girlfriend may appear to fly by in light speed.

Gjesme (1979; 1983a; 1983b) defines future time orientation (FTO) as an aptitude
for anticipating and organizing future events. People with high FTO are usually more
adept at making plans and solving problems. The capacity for thinking about a personal
future is critical to the successfiil vocational rehabilitation of people with progressive
disabilities because they need to be able to foresee what awaits them in their lives as their
physical condition continues to deteriorate. Three factors that shape an individual’s
development of FTO include (a) the motives, (b) the delay of gratification, and (c) the

ability to conceptualize the future. Culture, age, gender, anticipation of death, and

28

disability are some of other factors that have been attributed to variations of time
orientations (Martz, 2003; Martz & Livneh, 2003; Teahan & Kastenbaum, 1970).

Using J. W. Atkinson’s achievement motivation theory, Gjesme (1983b, 1979)
explains that the strength of a person’s FTO is determined by two intrinsic and differing
motives: the desire to approach success and the desire to avoid failure. Put simply,
motives direct people towards future achievements, in the form of both pleasure seeking
and pain avoidance. One distinction between the two types of motives needs to be made.
Awaiting the positive oftentimes harbors a longer FTO than does attempting to steer clear
of the negative. The lucrative potential earnings of physicians and attorneys, for example,
definitely have an impact on a student’s decision to spend more time studying and less
partying in order to gain admission into professional schools.

Future time oriented people usually think farther out in time about their future,
whereas present time oriented people appear to pay less attention to possible
consequences in regard to their own choices and have a propensity to engage in risk-
taking behaviors such as reckless driving and unsafe sex. Developmental psychologists
theorize that children and adolescents are more inclined to seek instant gratification if
they have failed to form a bond with their primary caregivers (Teahan & Kastenbaum,
1970). Their need to seek immediate gratification is a result of their failure to develop the
ability to conceptualize the possibility of future gains.

Using socioemotional selectivity theory, Fung, Carstensen, and Lutz (1999)
caution that goal selection must be examined in the temporal context. The relative
importance of a specific goal changes as a function of time (Fung & Carstensen, 2004).

Perhaps goal-oriented individuals recognize the contingency of their future outcomes and

29

their current actions (Rothspan & Read, 1996). In their study of sex behaviors among
heterosexual college students, Rothspan and Read found that those who were less
sexually experienced and who tended to have fewer sexual partners were also high in
FTO. In contrast, the responses of those participants low in fear of HIV and high in the
number of sexual partners were higher in present time orientation. Gender also has an
influence on a person’s time perspective. Females are more future time oriented and
report possessing fewer dangerous driving habits (e. g. speeding, tailgating). Males, on the
other hand, are more present time oriented and do not anticipate themselves being
involved in accidents (Zimbardo, Keough, & Boyd, 1997).

What is so remarkable about the conception of FTO is that it is clearly evident at
an early age. Past studies have demonstrated that schoolchildren high in internal control
are more future time oriented because they have a higher capacity to delay gratification
from forthcoming rewards (Klineberg, 1968, 1967; Lessing, 1972, 1968). But empirical
results correlating intelligence and individuals’ future time perspective in regard to
gender remain inclusive. Although men and women are of equal intelligence, Siegman
(1971) speculates that boys are indoctrinated by social learning from a young age to set
ambitious goals which usually take many years to materialize.

Although a definite answer is lacking as to how long it takes for a person with an
acquired disability to adapt, an optimistic outlook on life may be explained by time
perspective. In their study on death anxiety as a predictor of F TO among 317 individuals
with spinal cord injuries, Martz and Livneh (2003) found a relationship between
disability-generated depression and FTO. Participants who dwell in the past are less apt

to move forward with life and as a result remain unmotivated. It is possible that people

30

with disabilities might deploy temporal displacement as a defense mechanism to deny
their loss of physical function. They savor what they could do in the past rather than
acknowledge what they are no longer able to do after the onset of disability.

The relationship between future time orientation and desirable employment
outcomes can be located in a line of several previous inquiries (Feather & Bond, 1994;
Feather & Bond, 1983; Martz, 2003; Teahan & Kastenbaum, 1970). Feeling disoriented
in their sense of time is commonly observed among people who have been out of the
labor force. Furthermore, individuals who predict an earlier death are less likely to be
employed than their counterparts who believe they would have a longer lifespan. If the
preconceived views towards life in the distant future are overtly bleak, then it is not
surprising to find that people whose minds are trapped in the state of hopelessness and
helplessness choose to relinquish any goals. Hence it is interesting to notice that future
time oriented people with a high level of hope report having had more satisfying lives. A
recursive self-fulfilling prophecy seems to dictate one’s cognition to either a positive path

of thought or a negative path of thought.

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CHAPTER 3

METHODOLOGY

This study examined life satisfaction among people with progressive disabilities.
Its specific purpose was to investigate, in people with neuromuscular and neurological
diseases, the effects of hope, acceptance of disability, physical function, spirituality, and
future time orientation on life satisfaction. Another of its purposes was to learn if
acceptance of disability is related to hope, physical function, spirituality, and future time
orientation. The investigator looked into whether employment status can significantly add
to the prediction of life satisfaction after controlling for the aforementioned factors.

Design

The nature of this study was non-experimental, i.e. no attempt was made to
manipulate the variables. Research participants were not assigned to treatment and
control groups. Survey is the most common type of descriptive research used in
rehabilitation (Bellini & Rumrill, 1999). For this quantitative research, the investigator
used descriptive studies (e. g. surveys and questionnaires) to gather information.
Relationship analyses (e. g. multiple correlations, path analysis, and structural equation
modeling) were used to test the relationships of predictor variables (independent
variables) to criterion variables (dependent variables).

Participants

Men and women aged 18 and older who have progressive disabilities were invited

to participate in this study. A power analysis using an independent sample t-test at the .05

level (Bausell & Li, 2002) indicated that 64 participants per group would result in an 80%

32

chance of obtaining statistical significance for the effect size of .50. Cohen (1988)
suggests that a multiple regression model with six predictor variables and one outcome
variable, at an Oi level of .05 with power = .80 requires a sample size of 97.
Instruments

Spiritual Well—Being Scale (SWBS: Paloutzian & Ellison, 1991). The SWBS is a
self-report instrument designed to assess the subjective quality of life. It is comprised of
two lO-item subscales, the Religious Well-Being (RWB) and the Existential Well-Being
(EWB) scales, to gauge the construct of spiritual well-being. Each item uses a 6-point
Likert-type scale ranging from 6 (strongly agree) to 1 (strongly disagree) to indicate the
extent of agreement. Stronger agreement represents a higher level of well-being. The
RWB (odd numbered items) and the EWB (even numbered items) subscale scores
measure well-being expressed in relation to God and in the notion of life satisfaction and
life purpose respectively. Negatively worded items (numbers 1, 2, 5, 6, 9, 12, 13, 16, 18)
are reverse scored. The total possible score for SWBS ranges from 20 to 120. The
original scale was standardized on a normative sample of 206 students attending four
colleges, three in California and one in Idaho (Paloutzian & Ellison, 1982). The authors
estimate SWBS has an internal consistency of .89 to .94 and a test-retest reliability of .82
to .99. The validity of this scale is evidenced by its positive correlation with life purpose
and its negative correlation with loneliness.

Acceptance of Disability Scale-Revised (AD-R: Groomes & Linkowski, in press).
The AD-R is a 32-item self-reporting measure of adjustment to disability among people
with disabilities. Each statement is rated on a 4-point Likert-type scale ranging from 1

(strongly disagree) to 4 (strongly agree). Possible scores on the AD-R range from 32 to

33

128. A low score reflects a low level of acceptance of the disability. The AD-R was
adapted and modified from the original 50-item Acceptance of Disability (AD) Scale,
constructed by Linkowski (1971). The AD Scale is a widely used instrument and has
been translated to other languages. Its high level of internal consistency in measuring
degree of adjustment among people with disabilities is evidenced by its Cronbach’s a
values varying from .79 (Li & Moore, 1998) to .95 in the Swedish version (Nordstrom &
Lutzen, 1995).

Satisfaction With Life Scale (SWLS: Diener, Emmons, Larsen, & Griffin, 1985).
The SWLS is a 5—item self-reporting positive emotion scale that requires participants to
indicate how intensely they are experiencing global life satisfaction. Each item of the
instrument is measured on a 7-point Likert scale ranging from 1 (strongly disagree) to 7
(strongly agree). Adding up all the items derives the total score, which ranges from a low
satisfaction of 5 to a high satisfaction of 35. According to Diener and his colleagues
(1985), the SWLS has an average score of 23.5 with a standard deviation of 6.43. The
original 48-item SWLS was constructed with a convenience sample of 176
undergraduates at a research-oriented university in the Midwest. Factor analysis and
elimination of redundancies reduced the current scale to a group of 5 items (Pavot &
Diener, 1993). Diener, et al, (1985) found that the two-month test-retest correlation
coefficient and the Cronbach’s a coefficient were .82 and .87 respectively. Internal
consistency for another study to predict life satisfaction in black college students coping
with race-related stress was .80 (Danoff-Burg, Prelow, & Swenson, 2004). Lucas, Diener,

and Larsen (2003) assert that short scales with four or five items measuring positive

34

emotions often exhibit strong reliability similar to that seen in long scales with over one
hundred items. The SWLS is in the public domain and not copyrighted.

Hope Scale (HS: Snyder, Harris, Anderson, Holleran, Irving, et al., 1991). The HS
is a 12-item self-referent multidimensional cognitive appraisal designed to reflect the
relative level of hope pertaining to goal-related activities. The HS has two subscales and
four filler items. Among the 12 items of the questionnaire, four items assess pathways
(numbers 1, 4, 6, 8), four items gauge agency (numbers 2, 9, 8, 12), and four items serve
as a distracter (numbers 3, 5, 7, 11) to make the intent of the survey less apparent. They
are not used for scoring. The individual completing the instrument rates each response on
a 4-point Likert—type scale ranging from I (definitely false) to 4 (definitely true). The
psychometric properties of the HS have been shown to be both internally consistent--
Cronbach’s a coefficients of .82 to .84, (Chang & DeSimone, 2001; Danoff-Burg et al.,
2004) and stable, test-retest reliability of .85 after intervals of several weeks, (Snyder,
1995). Its concurrent validity demonstrates that hope correlates positively with optimism
and inversely with depression (Snyder, Shorey, Cheavens, Pulvers, et al., 2002). Adding
the 8 items, with a possible range from 8 to 32, derives the total score. Higher scores on
the HS correspond with greater hope.

Future Time Orientation Scale (FTOS: Gjesme, 1979). The FTOS is a l4-item
self-assessing instrument that measures the ability to cognitively organize and anticipate
future events. Gjesme refined the FTOS by adding eight items from Heimberg’s Future
Time Perspective Inventory (1963) to an earlier version of his 6-item FTO instrument.
Responses to these test items use a 4-point Likert format of agreement or disagreement: 1

= is very true ofme, 2 = is fairly true of me, 3 = is not too true of me, 4 = is not true at all

35

of me. Reverse scoring is used for statements 1, 3, 4, 5, 6, 7, 8, 9, 11, 12, and 13. The
items are summed to yield a possible total score of 14 to 56. Higher scores on the
instrument manifest a stronger orientation toward distant rewards and goals in the distant
future. The internal reliability of the FTOS has been measured in terms of Cronbach’s a
coefficient ranging from .57 (Martz & Livneh, 2003) to .67 (Halvari, 1991).
Demographic Questionnaire

A demographic questionnaire has been designed by the investigator to gather the
background information about research participants pertinent to the study. Research
participants are asked to respond to such questions as age, sex, racial ethnicity, religion,
educational attainment, type of disability, current employment status, and age at the onset
of disability.

Procedures

The principal investigator (PI) used the Internet search engine to locate web pages
of the National Multiple Sclerosis Society (NMSS) and the Muscular Dystrophy
Association (MDA). A courtesy letter explicating the purpose of the present study and
requesting teleconferences were sent to the program directors at both the national offices
and selected local chapters. To expedite the solicitation process, a brief e-mail message
containing a flyer document was also forwarded to those program directors whose e-mail
addresses are readily available on the Internet. Four or five days after delivering the
introductory letter, the PI made formal phone calls to these contact persons inviting them
to collaborate in the study. To recruit prospective research participants, the PI submitted
to the newsletters and magazines of the NMSS and the MDA a short feature article

indicating the importance and benefits of participation in the proposed study. Another

36

means to increase exposure was to place an advertisement in the aforementioned
organizations’ printed and electronic media.

Once approval was obtained to contact their members, pre-research invitation
cards were mailed to individuals on mailing lists provided by the collaborators. Invitation
cards returned by the postal service as undeliverable were eliminated from the mailing
list. This step was deemed necessary so that the actual surveys could be launched two
weeks afterwards. The contents of the survey packet included an explanatory letter, the
measurement instruments (described in the instruments section above), a demographic
questionnaire, a consent form, and a prepaid self-addressed envelope for the participants’
convenience. Brief instructions were printed on top of the first page of every instrument
to guide participants through the surveys. All survey packets were coded so that
information generated from the questionnaires could not be traced to individual
participants. To ensure participants’ anonymity and confidentiality, names and other
pieces of identifying information were not collected.

An electronic alternative to the traditional paper format was also available to
people with visual impairment and to those who have access to the Internet.
SurveyMonkey.com, an external online survey provider was used to collect data.
Electronic surveys, built using a web browser interface, were distributed via e-mail and
embedded as a part of an existing website. These were a flexible and cost effective means
to reach a geographically diverse population. Prospective participants would find the
URL link for the surveys in either the advertisement or the introductory letter. A follow-
up reminder/thank you card was sent to every participant during eighth week as a final

attempt to improve the response rate. Participants were also encouraged to refer the study

37

to other people with similar disabilities. The amount of time for overall data collection
was estimated to be approximately four months. As an added incentive, the first 100
participants received a $5 check.

Statistical Analyses

Heppner and Heppner (2004) recommend using a series of screening and
preliminary analyses to detect any irregularities in the normality of distributions, outliers,
and multicollinearity in variables before conducting a full scale of statistical analyses.
This Step is necessary to ensure that demographic variables such as sex, marital status,
education, race, age, religion, etc. do not limit scores on the outcome variable of the
present study.

A series of independent-samples t-test with Bonferroni procedure was used to
compare the mean differences on variables between two types of disability:
neuromuscular disease (e. g. muscular dystrophy) and neurological disease (e. g. multiple
sclerosis). The t-test was suitable for analysis of one categorical independent variable
(type of disability) and one continuous dependent variable (life satisfaction).

Both descriptive and inferential statistical techniques were employed. Initially,
descriptive statistics were provided for all study variables. This included means and
standard deviations for all continuous variables (i.e. age, duration of knowledge of
disability, future time orientation, acceptance of disability, and life satisfaction), and
frequencies and percentages for all categorical variables (i.e. gender, marital status,
educational attainment, race, type of disability, and employment status). For subsequent
analyses, some categories of the categorical variables were collapsed because the

observed frequencies were too low.

38

All inferential analyses were two-tailed using an alpha level of .05. The first
research question was: Which demographic and background characteristics (i.e. age,
gender, marital status, educational attainment, race, type of disability, employment status,
and duration of knowledge of disability) are predictive of future time orientation,
acceptance of disability, and life satisfaction? Three multiple regression analyses were
conducted to examine this research question, one for each of the three outcome variables.
In each case, the eight demographic and background variables were employed as
predictor variables. For the nominal variables with more than two categories (i.e. race,
marital status, level of education, and employment status), a set of dichotomies was
constructed and entered as predictors. The regression analyses were conducted by
entering all predictor variables simultaneously.

The second research question was: Are future time orientation, spiritual well-
being, hope, importance of religion, and acceptance of disability predictive of life
satisfaction? To examine this research question, a multiple regression analysis was
conducted with future time orientation and acceptance of disability as predictors of life
satisfaction. Bivariate correlations among these three variables were also computed.

The third research question was: Does acceptance of disability or employment
status mediate the relationship between future time orientation and life satisfaction?
According to Baron and Kenny (1986), and Frazier, Tix, and Baron (2004), there are four
steps to performing a test of mediation. First, it must be established that the predictor
variable (i.e. future time orientation) is related to the outcome (i.e. life satisfaction).
Second, the predictor variable must be related to the mediator (i.e. either acceptance of

disability or employment status). Third, the mediator must be related to the outcome

39

when controlling for the predictor. Fourth, the strength of the relationship between the
predictor and the outcome must be reduced when the mediator is added to the model. The
mediation can be either complete (if the effect of the predictor is entirely removed when
the mediator is added to the model) or partial (if the relationship between the predictor
and the outcome is smaller, but not zero, when then the mediator is added to the model).
Separate analyses were conducted to test mediation by acceptance of disability and
mediation by employment status. For the tests of employment status as a mediator, a set
of dichotomous dummy variables were constructed and the mediation test was performed
for each.

The fourth research question was: Can acceptance of disability be predicted by
hope, spiritual well-being, level of physical functioning, importance of religion, and
future time orientation? To examine this research question, a multiple regression analysis
was conducted with hope, Spiritual well being, level of physical functioning, and future
time orientation as predictors of acceptance of disability. Bivariate correlations among
these three variables were also computed.

Qualitative Analyses

An adapted phenomenological study was used to help the investigator understand
how the uncertainty of progressive disability affects the pursuit of personal goals and
influences the life perspectives in the focus group. Two open-ended questions were added
to the demographic questionnaire to elicit participants’ views on psychological and
behavioral manifestations of progressive disability. A three-step strategy guided the
interpretations of the qualitative data. The first step was to go through the data to identify

metaphors the participants used to describe their lived experiences and views. To extract

40

meanings, the second step focused on developing a list of tentative codes and matching
them with text segments. The last step required the investigator to tally the frequency of
codes and categories to note recurrent patterns and themes. The counts determined a

chain of logical frameworks in which the meanings were fittingly contextualized.

41

CHAPTER 4

RESULTS

This study’s initial purpose was to test a theoretically based multidimensional
model of life satisfaction among people with progressive disabilities. Although the
proposed model was influential in helping to conceptualize the myriad relations among
the cognitive, physical, spiritual and psychological variables, the investigator was unable
to test it due to the sample’s small size. Nevertheless, many interesting and useful
findings were generated through quantitative and qualitative analyses of the data set.

Quantitative Findings

Of the 228 participants who took part in the present study, 175 (76.8%) chose the
online option to submit their responses on line. The remainder used paper-and-pencil
packets and 53 of the 64 prospective participants who telephoned to request the packets
returned them (a response rate of 82.8%). Calculation of the online participants’ response
rate was not possible because the website provider did not keep track of the number of
hits it received. Moreover, the “consent to participate” page was programmed to deter
unsuitable prospective participants. Visitors to the website would exit automatically from
the online survey if they did not click the “yes” button on the consent form. Using SPSS
12.0, all data were screened for errors, outliers and skewness. Multicollinearity was
checked to detect whether the regression model’s independent variables were highly
interrelated. Tabachnick and F idell (2001) suggest that the correlations between the
independent variables should not exceed the limit of r = .70. None of them appeared to

violate the statistical assumptions.

42

Descriptive Statistics

The present study’s internal consistency Cronbach’s a coefficients were as
follows: Acceptance of Disability Scale-Revised or = .92, Spiritual Well-Being Scale on =
.93, Satisfaction With Life Scale or = .93, Hope Scale or = .83, and Future Time
Orientation Scale or = .58.

Descriptive statistics for the categorical variables describing the 228 participants
are shown in Table 1. Approximately two-thirds of the sample (N = 151, 66.2%) were
female, and the vast majority of the respondents were Caucasian (N = 203, 89.0%). The
Midwest provided the most respondents (N = 113, 49.6%), followed by the West (N = 45,
19.7%), the South (N = 35, 15.4%), and the Northeast (N = 27, 11.8%). Exactly half of
the respondents were Protestant, with an additional 23.2% being Catholic. The
respondents tended to report either low (N = 94, 41.2%) or average (N = 66, 28.9%)
physical functioning. More than half of the respondents were married (N = 118, 51.8%),
but 31.1% (N = 71) had never been married. The most common education levels were
bachelor’s degrees (N = 78, 34.2%) and high school diplomas (N = 70, 30.7%). The
employment status of the respondents varied widely, with 23.2% (N = 53) retired, 21.5%
(N = 49) employed full time, and 18.4% (N = 42) unemployed. In addition, 11.4% (N =
26) were students, 10.1% (N = 23) were homemakers, 7.9% (N = 18) were self-employed,
and 7.5% (N = 17) were employed part time. Approximately twice as many respondents
had neuromuscular diseases (N = 152, 66.7%) as had neurological diseases (N = 73,
32.0%).

Table 2 contains descriptive statistics for the continuous study variables. The

average age of the sample was 46.44 years (SD = 13.30 years). The skewness and

43

kurtosis of age and years since diagnosis of disability were less than 1, indicating the
scores from this sample are normally distributed. As a rule of thumb, the closer the values
for skewness and kurtosis to 0, the better. Both variables age (skewness = .024, kurtosis =
-.469) and years since diagnosis of disability (skewness = .839, kurtosis = -.067)
appeared to meet the normality of the distribution assumption. The average rating for the
importance of religion was 3.28 (SD = 1.48) on a scale from 1 to 5. The respondents had
been aware of their disability for an average of 18.08 years (SD = 14.10 years). In other
words, most of the participants were not new to their disabilities. The mean score for
hope was 25.79 (SD = 3.65) out of a possible 48. People with progressive disabilities had
more hope in general than did women of ages 70 and older (M = 22.5, SD = 5.4)
(Westburg, 2001) and other disability types—diabetes (M = 24.66, SD = 3.02), spina
bifida (M = 21.24, SD = 4.97) and cerebral palsy (M = 22.90, SD = 4.50) (Horton &
Wallander, 2001). The mean score for spiritual well-being was 79.27 (SD = 19.03) out of
a possible 120, which is much higher than the mean score of patients (M = 55.15, SD =
24.33) discharged from a rehabilitation hospital after medical recovery (Kim,
Heinemann, et al., 2000). Despite the medium levels of hope and spiritual well-being,
peOple with progressive disabilities seemed to be quite accepting of their disabilities. The
average rating for acceptance of disability was 100.93 (SD = 16.47) out of a possible 128,
which is quite comparable to the sample of women with poliomyelitis sample (M =
101.49, SD = 12.76) (Barton, 2005). The participants had an average of 30.56 (SD =
4.95) for future time orientation. The mean for satisfaction with life was low at 21.73 (SD
= 7.51), compared to healthy young adults (M = 26.18, SD = 5.72) (Arrindell, Heesink, &

Feij, 1999). The reliabilities of the acceptance of disability (.93), hope (.83), life

44

satisfaction (.85), and spiritual well being (.93) scales were all high. The reliability of the
future time orientation scale was only .58, although this is consistent with existing
literature on this scale.
Inferential Statistics

Research Question 1

The first research question of the current study was the following: Which
demographic and background characteristics (i.e., age, sex, marital status, educational
attainment, race, type of disability, employment status, level of physical functioning, and
duration of knowledge of disability) are predictive of future time orientation, acceptance
of disability, and life satisfaction? The categories for three of the demographic and
background variables, marital status, educational attainment, and race were collapsed
based on the observed frequencies. Marital status was collapsed into married, never
married, and other. Educational attainment was collapsed into high school or less,
associate’s degree, bachelor’s degree, and graduate degree. Race was collapsed into
Caucasian and other. The coding for the categorical variables was as follows: sex was
coded as O = male, 1 = female; marital status was coded into two dummy variables
indicating never married and other individuals (i.e. separated and divorced individuals);
education was coded into three dummy variables indicating associate’s degree, bachelor’s
degree, and graduate degree; race was coded as 0 = Caucasian, l = other; type of
disability was coded as O = neuromuscular disease, 1 = neurological; employment status
was coded into six dichotomies indicating employed full time, employed part time, self-

employed, homemaker, student, and unemployed

45

Table 3 presents the results of the regression analysis with future time orientation
as the outcome variable. Overall, the model was not statistically significant, F (17, 199) =
.90, p = .581, R2 = .07. However, two of the predictor variables did have statistically
significant individual effects. First, the type of disability was statistically significant ([3 =
.17, p = .035). Because the coding for this variable was 0 = neuromuscular, 1 =
neurological, the positive value for the [3 coefficient indicates that respondents with
neurological disorders had higher scores on future time orientation and were more future
oriented. Second, being employed full time was statistically significant ([3 = -.19, p =
.050). This indicates that respondents who were employed full time tended to have lower
scores on future time orientation. In other words, they tended to focus more on the
present and less on the future.

Table 4 presents the results of the regression analysis with acceptance of disability
as the outcome variable. This model was statistically significant, F (17, 198) = 2.67, p =
.001, R2 = .19. The R2 value was .19, indicating that 19% of the variance in acceptance of
disability was explained by the set of predictors. Four of the predictor variables were
statistically significant. First, females tended to have higher scores on acceptance of
disability than males ([3 = .16, p = .029). Second, being employed full time was
associated with higher scores on acceptance of disability ([3 = .18, p = .046). Third, those
with higher levels of physical functioning tended to have higher acceptance of disability
scores ([3 = .15, p = .029). Fourth, those with more years since diagnosis tended to have
higher scores on the acceptance of disability scale ([3 = .21, p = .005).

Table 5 presents the results of the regression analysis with life satisfaction as the

outcome variable. The model as a whole was statistically significant, F (17, 199) = 2.80, p

46

< .0005, R2 = .19. The R2 value was .19, indicating that 19% of the variance in
satisfaction with life was explained by the set of predictors. Five of the predictor
variables were statistically significant. First, females tended to have higher life
satisfaction scores ([3 = .24, p = .001). Second, never having been married was associated
with lower life satisfaction scores ([3 = -.21, p = .008). Third, being separated or divorced
(i.e. the “other” marital status category) was associated with lower life satisfaction scores
([3 = -.20, p = .005). Fourth, higher levels of physical functioning were associated with
higher life satisfaction scores (13 = .14, p = .040). Fifth, a larger number of years since
diagnosis was associated with higher life satisfaction scores ([3 = .15, p = .039).
Research Question 2

The second research question was the following: Are future time orientation,
spiritual well-being, hope, importance of religion, and acceptance of disability predictive
of life satisfaction? Table 6 presents the bivariate correlations among the Six variables.
Life satisfaction was positive correlated with spiritual well-being (r = .39, p < .0005),
hope (r = .55, p < .0005), and acceptance of disability (r = .58, p < .0005). Future time
orientation was negatively correlated with hope (r = -.18, p = .003) and acceptance of
disability (r = -.15, p = .010). Spiritual well being was positively correlated with hope (r
= .37, p < .0005), importance of religion (r = .43, p < .0005), and acceptance of disability
(r = .34, p < .0005). Finally, hope and acceptance of disability were positively correlated
(r = .62,p < .0005).

Table 7 contains the results of the corresponding regression analysis. Overall, the
model was statistically significant, F(5, 221) = 32.49, p < .0005, R2 = .42. The R2 value

was .42, indicating that 42% of the variance in life satisfaction was explained by the set

47

of predictors. Three of the predictors were statistically significant. First, higher spiritual
well being scores were associated with higher levels of life satisfaction, [3 = .17, p = .006.
Second, higher hope scores were associated with higher levels of life satisfaction, [5 = .28,
p < .0005. Third, higher acceptance of disability scores were associated with higher levels
of life satisfaction, [3 = .36, p < .0005.
Research Question 3

The third research question was the following: Do acceptance of disability or
employment status mediate the relationship between future time orientation and life
satisfaction? The first condition of mediation is that future time orientation must be
predictive of life satisfaction. This condition must be met before the test for mediation
can proceed. As can be seen in Table 6, the correlation between future time orientation
and life satisfaction was not statistically significant (r = -.07, p = .132). Because there is
no relationship between future time orientation and life satisfaction, there is no possibility
that either acceptance of disability or employment status can be a mediator variable, and
therefore no further analyses were performed for the third research question.
Research Question 4

The fourth research question was: Can acceptance of disability be predicted by
hope, spiritual well-being, level of physical functioning, importance of religion, and
future time orientation? The bivariate correlations among these five variables are shown
in Table 8. Eight of the 15 correlations in this table were statistically significant.
Acceptance of disability was positively correlated with hope (r = .62, p < .0005), spiritual
well being (r = .34, p < .0005), and physical functioning (r = .21, p = .001), and

negatively correlated with future time orientation (r = -. 16, p = .009). Hope was

48

positively correlated with spiritual well being (r = .38, p < .0005) and physical
functioning (r = .27, p < .0005), and negatively correlated with future time orientation (r
= -. 19, p = .002). Importance of religion was positively correlated to spiritual well-being
(r = .43, p < .0005). No other correlations were statistically significant.

The results of the regression analysis are shown in Table 9. The model was
statistically significant, F(5, 218) = 31.39, p < .0005, R2 = .42. The R2 value was .42,
indicating that 42% of the variance in self-acceptance of disability was explained by the
set of predictors. Three of the predictors were statistically significant. First, higher scores
on the hope scale were associated with higher scores on acceptance of disability, [3 = .53,
p < .0005. Second, higher scores on the spiritual well being scale were associated with
higher scores on acceptance of disability, [3 = .20, p = .001. Third, higher scores on the
importance of religion were associated with lower scores on acceptance of disability, [3 =

-.16, p = .008.

49

Table 1

Descriptive Statistics for Categorical Study Variables

 

 

Frequency Percentage
Gender
Male 77 33.8
Female 151 66.2
Race
Caucasian 203 89.0
African American 10 4.4
Hispanic 3 1.3
Asian or Pacific Islander 8 3.5
American Indian or Alaskan Native 2 .9
Multiracial 2 .9
Geographic Location
Northeast 27 1 1.8
Midwest 1 13 49.6
South 35 15.4
West 45 19.7
Other 7 3.1
Missing 1 .4

 

50

 

Frequency Percentage

 

Religion
Buddhism 2 .9
Catholic 53 23.2
Judaism 10 4.4
Islam 3 1.3
Protestant l 14 50.0
Other 45 19.7
Missing 1 .4

Level of Physical Functioning

Very low 27 l 1.8
Low 94 41.2
Average 66 28.9
High 27 11.8
Very High 1 l 4.8

Missing 3 1.3

Marital Status

Never married 71 31.1
Married 1 18 51.8
Divorced 34 14.9
Widowed 5 2.2

 

51

 

Frequency Percentage

 

Level of Education

Less than high school 2 .9
High school 70 30.7
Associate’s degree 34 14.9
Bachelor’s degree 78 34.2
Graduate degree 43 18.9
Missing 1 .4
Employment Status
Employed full-time (40 hrs) 49 21.5
Employed part-time (less than 40 hrs) 17 7.5
Self-employed 18 7.9
Retired 53 23.2
Homemaker 23 10. 1
Student 26 11.4
Unemployed 42 1 8.4
Type of Disability
Neuromuscular disease 152 66.7
Neurological disease 73 32.0
Missing 3 1.3

 

52

Table 2

Descriptive Statistics for Continuous Study Variables

 

 

Mean SD Reliability
Age 46.44 13.30 -
Importance of Religion 3.28 1.48 -
Years Since Diagnosis 18.08 14.10 -
Acceptance of Disability Scale 100.93 16.47 .93
Hope Scale 25.79 3.65 .83
Future Time Orientation Scale 30.56 4.95 .58
Satisfaction with Life Scale 21.73 7.51 .85
Spiritual Well-Being Scale 79.27 19.03 .93

 

53

Table 3

Results of Regression Analysis with Demographics and Background Variables Predicting

Future Time Orientation

 

 

B SE3 [3 t p
Age -.02 .03 -.06 -.72 .472
Gender -.67 .81 -.06 -.83 .409
Never married 1.09 .89 .10 1.23 .219
Other marital status .63 1.02 .05 .62 .534
Associate's degree -.92 1.1 1 -.06 -.82 .412
Bachelor's degree .02 .86 .00 .03 .978
Graduate degree -1.24 1.01 -.10 -1.23 .221
Race .05 1.19 .00 .04 .967
Type of Disability 1.81 .85 .17 2.12 .035
Employed full time -2.27 1.15 -.19 -1.97 .050
Employed part time -2.94 1.52 -.16 - l .93 .055
Self employed -1 .36 1.43 -.08 -.95 .342
Homemaker -l . 12 1.43 -.07 -.78 .437
Student -2.45 1.44 -.16 -1.71 .090
Unemployed -l .22 1.16 -.09 - 1 .04 .298
Level of Physical Functioning .29 .36 .06 .79 .430
Years Since Diagnosis .01 .03 .02 .31 .753

 

Note. F(17, 199) = .90, p = .581, R2: .07

54

Table 4

Results of Regression Analysis with Demographics and Background Variables Predicting

Acceptance of Disability

 

 

B SE3 [3 t p
Age .14 .10 .11 1.34 .182
Gender 5.62 2.56 .16 2.20 .029
Never married -3. 12 2.79 -.09 -1.12 .264
Other marital status -5.33 3.19 -. 12 -1.67 .096
Associate’s degree .99 3.50 .02 .28 .777
Bachelor's degree 3.68 2.71 .11 1.36 .176
Graduate degree 4.67 3.18 .1 l 1.47 .144
Race -3.10 3.74 -.06 -.83 .408
Type of Disability .43 2.68 .01 .16 .872
Employed filll time 7.26 3.62 .18 2.01 .046
Employed part time .64 4.78 .01 .13 .893
Self employed 5.90 4.48 .10 1.32 .190
Homemaker -1.30 4.50 -.02 -.29 .774
Student 6.28 4.52 .12 1.39 .166
Unemployed -1.69 3 .66 -.04 -.46 .644
Level of Physical Functioning 2.52 1.14 .15 2.21 .029
Years Since Diagnosis .24 .08 .21 2.82 .005

 

Note. F(17, 198)=2.67,p= .001,R2= .19

55

Table 5
Results of Regression Analysis with Demographics and Background Variables Predicting

Life Satisfaction

 

 

B SE3 0 t P
Age -.04 .05 -.07 -.87 .387
Gender 3.77 1.16 .24 3.25 .001
Never married -3.36 1.26 -.21 -2.66 .008
Other marital status -4.09 1.44 -.20 -2.83 .005
Associate's degree 1.71 1.58 .08 1.08 .281
Bachelor's degree 1.26 1.23 .08 1.03 .306
Graduate degree .85 1.44 .04 .59 .554
Race 1.36 1.69 .05 .80 .423
Type of Disability -.73 1.21 -.05 -.61 .546
Employed full time .67 1.63 .04 .41 .680
Employed part time -.91 2.16 -.03 -.42 .674
Self employed 1.73 2.03 .06 .85 .396
Homemaker -1.04 2.04 -.04 -.51 .612
Student -.41 2.05 -.02 -.20 .843
Unemployed -3.20 1.66 —. 16 -1.93 .055
Level of Physical Functioning 1.07 .52 .14 2.07 .040
Years Since Diagnosis .08 .04 .15 2.07 .039

 

Note. F(17, 199) = 2.80, p < 0005,18: .19

56

Table 6

Correlations among Future Time Orientation, Spiritual Well Being, Hope, Importance of

Religion, Acceptance of Disability, and Life Satisfaction

 

 

 

Future Spiritual Hope Importance Acceptance Life
Time Well of Religion of Satisfaction
Orientation Being Disability

Future Time 1.00

Orientation

Spiritual -.07 1 .00

Well Being

Hope .39* -.10 1.00

Importance .55* -.18* .37* 1.00

of Religion

Acceptance .06 .03 .43 * .07 1.00

of Disability

Life .58* -.15* .34* .62* -.02 1.00

Satisfaction

*p < .05

57

Table 7

Results of Regression Analysis with Future Time Orientation, Spiritual Well Being,

Hope, Importance of Religion, and Acceptance of Disability Predicting Life Satisfaction

 

 

B SE3 [3 t P
Future Time Orientation .08 .08 .05 .95 .343
Spiritual Well Being .07 .03 .17 2.76 .006
Hope .57 .14 .28 4.14 <.0005
Importance of Religion -.12 .29 -.02 -.39 .696
Acceptance of Disability .16 .03 .36 5.39 <.0005

 

Note. F(5, 221) = 32.49, p < .0005, R2: .42

58

Table 8
Correlations among Hope, Spiritual Well Being, Physical Functioning, Future Time

Orientation, Importance of Religion, and Acceptance of Disability

 

 

 

Acceptance Hope Spiritual Physical Future Importance
of Well- Functioning Time of Religion
Disability Being Orientation
Acceptance 1 .00
of
Disability
Hope .62* 1.00
Spiritual .34* .38* 1.00
Well-Being
Physical .2 1* .27* .06 1.00
Functioning
Future Time -.16* -. 19* -.10 .05 1.00
Orientation
Importance -.03 * .07 .43 * .09 .03 1.00
of Religion
*p < .05

59

Table 9
Results of Regression Analysis with Hope, Spiritual Well Being, Physical Functioning,

Importance of Religion, and Future Time Orientation Predicting Acceptance of Disability

 

 

B SE; B t P
Hope 2.37 .27 .53 8.82 .000
Spiritual Well Being .17 .05 .20 3.22 .001
Physical Functioning 1.18 .89 .07 1.32 .187
Future Time Orientation -.13 .18 -.04 -.71 .479
Importance of Religion -1.73 .65 —. 16 -2.70 .008

 

Note. F(5, 218) = 31.39, p < .0005, R2: .42

60

Qualitative Findings

In addition to the instrument, this survey also contained two open-ended questions
to allow participants to express their satisfaction with life. The raw data of qualitative
inquiry provides the researcher with the opportunity to capture more precisely the inner
worlds of survey respondents in a way that might not be quantifiable with standardized
questionnaire items on quantitative-based scales.

The investigator used an adapted phenomenological study to explore the central
issue of essential influences on life perspective of uncertainty by progressive disabilities.
This type of qualitative inquiry aims to extract the meaning of several research
participants’ individual lived experiences regarding preconceived ideas about the
phenomenon (Creswell, 1998). The data were collected from the written answers to the
two open-ended questions furnished by the subjects. The research outcome of a sound
qualitative study is contingent upon the selection of fitting philosophical and theoretical
frameworks. Impartial interpretations of subjective human experiences require the
investigator to examine and understand how people with disabilities react to the prospect
of uncertainties that are inherent in their future. Purposeful sampling strategies, such as
finding prospective participants who have similar disabilities, permit a phenomenological
study to establish criteria necessary to generalize patterns of psychological and
behavioral manifestations ubiquitous only in the target population.

Social scientists espouse a three-step analytic strategy being considered in the
qualitative data dissemination process (Huberrnan & Miles, 1994; Taylor & Bogdan,
1998; WOlcott, 1994). The initial step of the procedure is to read through all collected

information to form a general sense of the data as a whole. Special attention is paid to

61

identifying the metaphors used by research participants to depict their worldviews and
experiences. Further reduction of the text data is made possible by creating a list of
tentative codes and categories. In essence, the second step functions as a mechanism to
extract meanings systematically by matching a code with a text segment. Lastly, the
investigator tallies the frequency of codes and categories to note patterns and themes that
seem to appear recurrently. The counts can later be used to determine a chain of logical
frameworks in which the meanings are fittingly contextualized.

Participants were asked to answer two open—ended questions to tap into their
feelings and beliefs on how disability might have altered the course of their lives. The
two questions were the following:

1. In what ways does your disability affect the pursuit of personal goals such

as employment and romantic relationships?

2. How does the uncertainty of your disability influence life perspectives?
To extract meaningful themes, a phenomenological existential approach was used to
cluster significant statements.

Of the 228 research participants, 107 chose to respond to the qualitative section of
the present study, which number consisted of 83 (77.6%) online participants and 24
(22.4%) mail survey participants. Moreover, there were 38 (35.5%) male respondents and
69 (64.5%) female respondents. In term of their disability types, 81 (75.7%) had a
neuromuscular disorder and 26 (24.3%) had a neurological disorder. The demographic
composition breakdown was 92 (86%) White, 3 (2.8%) Black, 1 (0.9%) Asian, and 11
(10.3%) Other. The descriptive statistics for the categorical variables in the qualitative

sample are roughly proportional to the overall sample.

62

Table 10

Sample Coding for Romantic Relationships, With Quotations From Participants

 

Significant Statements: Romantic Relationships

 

 

Participant 0016 “Hesitancy in establishing relationships - not everyone is willing to
put up with the idiosyncracies of my disease.”

Participant 0019 “It's harder to have a relationship with somebody and be in a
wheelchair.”

Participant 0028 “Romantic relationships are a moot point, as no one really has time or
patience for a long term relationship with someone who is not
physically able.”

Participant 0069 “I felt romance was never to be and I doubted anyone would want to
deal with all the assistance I need in order to deal with the day.”

Participant 0098 “As far as romantic relationships it made me hesitant as I was unsure
how things would or wouldn’t work after my first exacerbation.
Things worked out fine.”

Participant 0126 “Unable to find someone who would want a romantic relationship
because of my appearance.”

Participant 0136 “Romantic relationships have been frustrating. I still haven’t found
someone who can handle my disability. The last girl I went out with
told me, ‘it is too much’.”

Participant 0149 “My romantic relationship is hard due to me getting weaker.”

Participant 0210 “I am married, but my disability has caused a strain on our
relationship as it was built partially on our love of outdoor and forest
activities, which I can no longer do.”

Table 11

Sample Coding for Becoming a Better/More Accepting Person, With Quotations From

Participants

 

Significant Statements: Becoming a Better/More Accepting Person

 

Participant 0020

Participant 0039

Participant 0045

Participant 0085

“I have been treated badly because of my physical disability, and that
has showed me how to treat others.”

“Having this disabling disorder has been the best thing that has ever
happened to me. I have learned to love each minute knowing it could
be my last.”

“. . .my disability is the reason for my having a great perspective on
life.”

“I see many people in the world with pain mhysical & emotional), so
my Dystonia has opened my eyes even more to helping other people,

 

63

to being more patient with myself and with other people, to not being
so hard on myself and on other people, and to living ‘in-the-

9”

moment .

 

Table 12

Sample Coding for Not Wanting Children, With Quotations From Participants

 

Significant Statements: Not Wanting Children

 

 

Participant 0026 “I do not plan to have children because of the disability.”

Participant 0107 “I think about the possibility of one of my children or grandchildren
inheriting this disability.”

Participant 0113 “My husband and I decided not to have children, in part, because of
the uncertainty.”

Participant 0155 “We want to be marriend and have a family as well but I feel so
scared to pass on my disabil[i]ty to a future child.”

Participant 0168 “It has impacted my life. . .physically. . .and emotionally because it is
genetic and I have two children.”
“I also have a great deal of grief over the idea that my children have a
50% chance of also having cmt and that their children may have it.”

Participant 0196 “I have concerns about how pregnancy would affect my mobility and
use of mobility devices.”

Table 13

Sample Coding for Burden, With Quotations From Participants

 

Significant Statements: Becoming a Burden

 

 

Participant 0026 “I resisted romantic relationships because I did not wish to burden
another with the disability.”

Participant 0047 “i have a terminal illness, and therefore can not seek out a romantic
relationship with anyone as it would be a burden on them.”

Participant 0066 “You just are sorry that your spouse. . .is touched with the difficulty
of your disease every day.”

Participant 0097 “I was (and still am in a way) afraid of becoming dependent upon
others, unable to function, unable to support myself financially. I fear
losing the quality of my life.”

Table 14

Sample Coding for Employment Issues, With Quotations From Participants

64

 

Significant Statements: Employment Issues

 

 

Participant 0033 “I BECAME VENT DEPENDAeNT AND HAD TO QUIT A JOB
THAT I LOVED.”

Participant 0040 “I have to plan for an early exit from the work force...”

Participant 0060 “I have not been sucessful with a part-time job either, due to fatrigue,
weakness, stamina, etc associate with CMT.”

Participant 0066 “As my disease progressed and I retired.”

Participant 0085 “I was forced to resign from a very good job as an editor in
educational publishing (and I believe it had a lot to do with my
disease)”

Participant 0110 “I stopped working. . .when I could now longer sit at the computer for
more than an hour without symptoms.”

Participant 0122 “. . .employment in the traditional sense(go to an office, work all day)
impossible for me.”

Participant 0130 “I worked full time until I was 40 yrs. old.”

Participant 0144 “I don’t think I can be employed due to my fatigue.”

Participant 0170 “My progressive disease greatly affected my employment history.
The job hunt in itself was a major challenge.”

Participant 0205 “. . .it made choosing a career path very difficult.”

Participant 0210 “I am unemployable due to inability to stand and walk for long
periods of time and extreme lethargy.”

Table 15

Sample Coding for Caregiving, With Quotations From Participants

 

Significant Statements: Caregivers

 

 

Participant 0027 “. . .my husband is my sole caregiver...”

Participant 0041 “I ponder my fiiture and worry about what will happen if I don't have
family to take care of me.”

Participant 0052 “My late husband was always willing to provide assistance.”

Participant 0078 “My husband has stood by me through all the trouble. . .and we still
have a loving and committed relationship.”

Participant 0081 “I have been blessed with a very wonderful husband.”

Participant 0087 “The only thing is I wonder what will happen when I. . .cannot take
care of myself.”

Participant 0148 “How will visit them [children and grandchildren] someday if my
husband can’t take me?”

Table 16

Sample Coding for Transportation Issues, With Quotations From Participants

65

 

Significant Statements: Transportation Issues

 

 

Participant 0019 “It’s hard to get transportation.”

Participant 0027 “. . .availability of transportation is completely tied to his schedule.
Because of this, I spend most days alone at home...”

Participant 0061 . .limited in employment because of transportation.”

Participant 0115 “We can’t afford a van for social security to adapt for me so I still
can't drive places.”

Participant 0148 “Transportation seems to be the hardest thing to deal with.”

Table 17

Sample Coding for Planning for the Future, With Quotations From Participants

 

Significant Statements: Flaming for the Future

 

 

Participant 0027 “My disability affects all areas of my life...[and] does not allow me to
plan too far in the future.”

Participant 0036 “I am unable to plan ahead for much of anything, except possibly
long-term care and/or my death.”

Participant 0038 “Basically. . .I cannot plan for the future.”

Participant 0045 “. . .the future of my disability is uncertain. .

Participant 0050 “I try not to dwell on what’s coming for me...”

Participant 0061 “I’m uncertain about having a family because I don't know how I will
handle it.”

Participant 0080 “One cannot make long—term future plans because it is impossible to
know the status of one’s health at any particular time in the future.”

Participant 0140 “I don’t know what my future holds so I am hesitant to plan ahead.”

Table 18

Sample Coding for Diminished Sexual Activities, With Quotations From Participants

 

Significant Statements: Diminished Sexual Activities

 

Participant 0029 “I couldn’t care less.”

Participant 0058 “. . .we stopped having much some ten years ago...”

Participant 0073 “Due to medications they have limited my relationship with my
wife.”

Participant 01 12 “. . .I’ve lost interest in sex...”

Participant 0130 “. . .the sex life has slowed somewhat. .

 

66

Table 19

Sample Coding for Self-Esteem and Confidence, With Quotation From Participants

 

Significant Statements: Self-Esteem and Confidence

 

 

Participant 0016 “I think it has had a big influence on my shyness and sense of self.”

Participant 0066 “As my disease progressed. . .my self esteem, confidence and self
consciousness are a management issue.”

Participant 0115 “I think my disability has given me doubts about myself.”

Participant 0126 “Afraid to approach. . .women because of definite rejection.”

Participant 0141 “I sometimes question my self-worth and my self-esteem suffers
greatly”

Table 20

Sample Coding for Modified Goals, With Quotations From Participants

 

Significant Statements: Modified Goals

 

 

Participant 0037 “Over the years I’ve had to change my personal goals as my disease
progressed.”

Participant 0045 . .I had to be conscious of the career I pursued because of physical
limitations (1 use a wheelchair)”

Participant 0046 “Employment options are more limited as I tire easily.”

Participant 0050 “It limits the type of work I can do because of weakness. . .work areas
that are not big enough for me to work in them with a wheelchair.”

Participant 0065 “It has obliged me to choose a career that does not involve any sort of
physical exertion. . .”

Participant 0069 “I have never gone back to get my Teaching Certificate because of
the limitations 1 face...”

Participant 0092 “I have had to modify various goals in my life. In making career
choices, I had to give up ideas about more physically challenging
careers.”

Participant 0108 “Disability affected my job choices in order to exclude a lot of
walking.”

Participant 0173 “My biggest regret is my inability to travel via an airplane. Too much
medical equipment needed to make trips.”

Participant 0195 “Dreams become altered accordingly and activities have been
systematically eliminated.”

Table 21

Sample Coding for Inability to Sustain Employment, With Quotations From Participants

67

 

Significant Statements: Inability to Sustain Employment

 

Participant 0074 “I am not employed as I can not get help going to the bathroom at a
job. The aides provided by my state are not allowed to help you at a
job or at school.”

Participant 0099 “I was an RN working in surgery and now I am unemployed due to
my disability.”

Participant 0112 “MS ruined my career as a statistician... I do not have the energy or
clarity of mind for that anymore.”

Participant 0141 “I am unable to work due to my MS...”

Participant 0149 “With my disability I am not able to work due to having trouble
sitting, standing, lifting, walking-what little I do.”

 

Table 22
Sample Coding for Being an Undesirable Intimate Partner, With Quotations From

Participants

 

Significant Statements: Being an Undesirable Intimate Partner

 

Participant 0058 “. . .now my body is so deformed I can understand that I no longer am
a viable partner.”

Participant 0067 “. . .I found that many men shied away from becoming romantically
involved with me.”

Participant 0125 “it makes me less attractive to women, it has inhibited my seeking
romantic relationships.

Participant 0201 “I find myself avoiding romantic relationships because I feel I am
missleading the individual.”

Participant 0214 “It has also made me more accepting of those who may not find me
attractive because of my disability, since I myself still struggle with
this.”

Participant 0234 “. . .it does seem like I will never be able to find anyone again that
finds me attractive.”

 

Table 23

Sample Coding for Apprehensive of Future, With Quotations From Participants

 

Significant Statements: Apprehensive of Future

 

Participant 0102 “YOU CAN NOT PLAN FROM DAY TO DAY.”
Participant 0140 “I don’t know what my future holds so I am hesitant to plan ahead.”
Participant 0141 “It is very scary. I have no clue what tomorrow will bring, therefore it

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is hard to plan ahead for much.”

Participant 0149 “I have found myself to be getting weaker and what the future holds 1
am not sure of and needless to say I am scared.”

Participant 0185 “I wonder how long I'll want to live in a body that is uncreasingly
unable to perform basic functions...”

Participant 0211 “. . .i dont know how long i'll live.”

 

Table 24
Sample Coding for Disability and a Concept of Guiding Deity, With Quotation From

Participants

 

Significant Statements: Disability and a Concept of Guiding Deity

 

Participant 0097 “I fear losing the quality of my life. I do, however, have a very strong
Christian faith and believe that things happen for a reason.”

Participant 0120 “God is with me helping me through this lifetime. “

Participant 0124 “. . .much of the uncertainty is mitigated by my faith. I cannot
emphasize enough the importance of believing in a Savior and a God
who is interested in your life and has a plan for your life that iS made
evident on a consistent basis.”

Participant 0148 “I know that God is taking care of me.

 

Table 25
Sample Coding for Feelings of Loss, Sadness and Turmoil, With Quotation From

Participants

 

Significant Statements: Feelings of Loss, Sadness and Turmoil

 

Participant 0168 “I also have a great deal of grief over the idea that my children have a
50% chance of also having cmt and that their children may have it.”

Participant 0220 “I am depressed about the furture and unsure what will be next.”

Participant 0234 “I try not to think about death and when it will come, but sometimes
it is hard not to.”

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Table 26

Percentage and Frequency of the Sampling Codes

 

 

Sampling Codes Frequency Percent of Respondents Citing
This Concern

Forming/maintaining romantic 26 24.30
relationships

Becoming a better person 7 6.54
Concern about sources of caregiving 4 3.73
Passing defective genes to children 9 8.41
Not wanting be a burden 6 5.61
Not wanting to become self-absorbed 1 0.01
Involuntary early retirement 23 21.50
Spouse or partner as a caregiver 7 6.54
Lack of suitable transportation 10 9.35
Not planning too far in the future 10 9.35
Loss of privacy 1 0.01
Loss of hope 3 2.80
Lack of assertiveness; low self-esteem 8 7.48
Changing personal or career goals 18 16.82
Inability to continue working 13 12.15
Feeling less desirable and attractive 11 10.28
Contemplation of suicide 3 2.80
Uncertain about the future 15 14.02

70

 

Sampling Codes Frequency Percent of Respondents Citing
This Concern

 

Here-and-now mentality; doing things 7 6.54

while one still can

Abandonment by spouse/partner 5 4.67
God’s plans 8 7.48
Avoidance of human contact 2 1.87
No faith in the Americans with 3 2.80

Disabilities Act
Suffering from emotional turmoil & 8 7.48

sadness

 

Emerging Themes

Although there were noteworthy individual divergences in the lived experiences
of 107 participants with progressive disabilities, a collective set of experiences
characterizing their methods of coping with uncertainties emerged after the investigator
had extrapolated inferences from a list of non-repetitive and non-overlapping statements.
Theme 1 : Involuntary Early Retirement

Twenty-one point five percent of the study participants (21 .5%) stated that they
chose to resign from their jobs before the mandatory retirement age for several reasons.
An oft-cited reason was that they had little faith in any legal protection of employment
rights the Americans with Disabilities Act might offer. Their pessimistic views mirror the
trend of unfavorable rulings in recent years by the US. Supreme Court, which have

favored corporations and business entities. Moreover, the study participants had neither

71

the knowledge nor financial resources to navigate through the labyrinth of the legal
system and challenge their employers. Most of them found it was far easier simply to
receive cash benefits from the Social Security Disability Insurance (SSDI) and the
Supplemental Security Income (881) programs than demand that employers agree to the
provisions for reasonable accommodations.

Some female respondents with multiple sclerosis felt they were being unfairly
accused of malingering because their managers and colleagues did not understand that
two individuals with the same disability might not have comparable levels of stamina and
strength in performing similar tasks. Because the presence of a personal care attendant at
the workplace is not always feasible, people with low levels of physical functioning may
not have their basic needs, such as assistance with toileting and feeding, met. Even in
cases in which employers were supportive and understanding, some participants with
neuromuscular diseases, knowing that they would no longer be able to keep up with their
past work productivity, decided to leave their companies on amicable terms before they
overstayed their welcomes.

Theme 2: Hindrance to Establishing and Maintaining Romantic and Intimate
Relationships

Finding the right person to spend the rest of one’s life with is never an easy task.
In a pattern consistent with the findings of previous studies (Chen, Brodwin, Cardoso, &
Chan, 2002), the occurrence of a progressive disability presented a major roadblock for
the participants in the focus group to fulfill goals of relationships and marriage. More
than 24% voiced their frustration and despair with forming and maintaining meaningful

romantic and intimate relationships with the opposite sex. Fear of rejection probably

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explains their hesitancy in becoming romantically involved with other persons. Study
participants who were fortunate to be in close relationships felt that equal partnerships
were hard to attain because in order to please their partners and keep them in the
relationships compromises were made indiscreetly at times.

According to several female respondents, spousal and partner abandonment
appeared to coincide with the extent of physical deterioration inflicted by a progressive
disability. A marriage or relationship that was built on sheer physical attraction or
common interest in, for example, outdoor activities, is especially susceptible to a
breakup. Adjustment and adaptation to a new disability involves not only the individual
who has a progressive disability but also his or her spouse or partner. The dynamics of a
marital or similar relationship shift from egalitarian to subordinate when the role of
caregiver is thrust upon the unaffected individual.

Theme 3: Changing Personal and Career Goals

Some of the participants (16.8%) in the study pointed out that the unpredictable
course of neuromuscular and neurological disabilities led to leveled expectations and
cause them to settle for more attainable personal and career goals. They found themselves
compelled to come to terms with their own disabilities and to accept what they could and
could not do. For example, flaring up of muscle weakness and loss of motor coordination
make jobs that demand high levels of physical exertion, such as those of deliveryman or
farmhand, unsuitable choices. Ignorance about rare medical conditions deters prospective
employers from hiring job seekers who have progressive disabilities. Some respondents
were willing to put up with stressfiil and unsatisfying jobs because they could not live

without the medical insurance coverage provided by their employers. Furthermore, they

73

considered it too risky to switch jobs given their declining physical conditions and the
exodus of many types of jobs overseas.
Theme 4: Fear of Uncertainties
Knowing that one will be taken care of as one ages provides the psychological security to
reduce stressors. For many people with progressive disabilities, however, the only known
element an uncertain future holds is the inevitable deterioration of physical functioning
and degeneration of cognitive modus operandi. Afflicted individuals often wonder where
the help will come from when they become incapable of performing the activities of daily
life. These legitimate worries have firm grips on the psyches, especially for those who do
not have spouses and children on whom to rely. After the initial phase of shock, many
newly diagnosed individuals delve into books and web resources to learn more about
their disabilities. Fear of uncertainties grows more terrifying when they understand the
prognosis for the loss of independence.
Theme 5: Feeling Less Desirable and Attractive

The aesthetic standards for the body projected by the mass media have
tremendous impact on personal self-esteem. People with disabilities who do not meet the
perceived beauty criteria may encounter rejections in the arena of dating and
relationships. Poor body image induces not just a low sense of self-worth but also
depression. Many people with disabilities lack the know-how to initiate friendships with
other persons within acceptable boundaries, because they never acquired or fully
developed appropriate dating etiquettes as youngsters. What is missing in them is the
confidence that allows for the dynamics of interaction. The challenges facing people

whose onset of disability takes place after they are married or in long-term relationships

74

include spousal ambivalence toward the new disability identity. Although varied types
and degrees of disharmony precede divorce and separation, dissatisfaction with a
spouse’s altered physical appearance and reduced energy level are often cited as the straw
that breaks the camel’s back.

Theme 6: Lack of A ccessible Transportation

Americans love the freedom and independence of roaming from place to place at
their own will. The car culture thrives on the premise that an individual has total control
over when and where he or she desires to go. However, this may not always be the case
for people with disabilities. The lack of accessible transportation severely limits
participants from entering the workforce and from integrating into their communities
socially. A handful of the respondents faulted worsening eye-hand coordination, gradual
muscle weakness and constant fatigue as the reasons for their eventual relinquishment of
driving privileges.

Punctuality is a highly valued work ethic expected of every employee regardless
of disability status, which makes keeping a job more difficult if people have to miss work
or Show up at work late due to transportation problems. This predicament is magnified in
rural communities where it is cost prohibitive for local governments to provide door-to-
door paratransit services for a small number of riders with disabilities spread out over a
vast geographical region. Going out on dates often proves to be an insurmountable
obstacle for those respondents who rely on public transportation or rides from family
members and friends. Consequently, social lives of people with disabilities are gravely
circumvented because reliable, affordable, and accessible transportation is hard to come

by.

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Theme 7 : Here-and—Now Mentality

Short future time orientation is clearly evident among people with neuromuscular
and neurological diseases. With no medical breakthrough for their diseases available in
the foreseeable future, the study participants’ here-and-now mentality seemed to be a
frequently adapted coping mechanism that forces them to live an accelerated frame of
lifespan. Knowing that time is not on their side, people with progressive disabilities tend
to prioritize things they want to accomplish in anticipation of the eventual loss of
physical functioning. Many choose to travel the world, to complete college education, to
visit family members and fiiends, to develop new hobbies, etc. The prospect of dying
convinces some of them to engage in financially irresponsible lifestyles, as they do not
see the need to save money for emergency use or retirement. They would rather spend
their money on themselves than leave it to their next-of-kin or the Internal Revenue
Service.
Theme 8: Passing on Hereditary Diseases

Children born to parents with neuromuscular and neurological disabilities are at a
great risk of developing the same diseases. With rare exceptions, the severity of
hereditary disability is more pronounced in successive generations of a lineage. A thorny
question often asked of people with these disabilities is whether it is ethically and morally
right to bring a child into the world knowing the kind of adversity he or she will endure.
Some parents express enormous grief and sorrow that their children will never be able to
play sports and to function independently. The bickering between medical ethicists and
theologians over who has the right to live once a disability has incapacitated completely

seems hollow because the lives of individuals living with progressive disabilities are

76

changed irrevocably. The quality of life for a child with a disability is bound to be
different from that of a child without a disability, no matter how much parents want to
believe the children’s lives are the same. On the other hand, by allowing eugenics to
determine who is fit to live, the world in effect condones a systemic extermination of
“undesirable” humans as carried out by the Nazis and the Spartans. Scientists did not
discover the gene that is responsible for causing muscle atrophy until recently. This lack
of knowledge and information about genetically based diseases strikes at the core of
affected parents’ hearts as they look at their own offspring and wonder if they would
have made the same decision to conceive children if they had known that they were to be

extremely susceptible to devastating medical conditions.

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CHAPTER FIVE

DISCUSSION

The current study was an attempt to deduce empirical evidence on life satisfaction
in people with neuromuscular and neurological diseases by investigating the relationships
among self-acceptance of disability, spiritual well-being, future time orientation, and
hope using multiple regression methods and qualitative procedures.

Self-Acceptance of Disability

Employment status, sex, level of physical functioning, and years since diagnosis
were found to be Significant predictors of self-acceptance of disability. The mean scores
were higher for those participants who held full-time employment. The vanishing of a
highly stratified caste system of the medieval era has led to redefinition of social status
by occupation of choice and its potential earning in the contemporary time. Employment
provides not only a financial security net; it also allows persons with disabilities to make
inroads into mainstream society. Evidence has revealed a strong correlation between self-
acceptance of disability and community integration (Snead & Davis, 2002). The identity
of a person, with or without a disability, is chiefly superimposed and defined by the type
of work he or she performs.

This study’s data support a relationship between sex and self-acceptance of
disability. Rigid societal expectations of gender roles that confirm men are less accepting
of their own disabilities than women. Disability connotes imperfection and
incompleteness, which evokes the image of emasculated manhood and feeble

masculinity. Once men with visible and significant disabilities realize they fall short of

78

the expected norms, feelings of inadequacy, unattractiveness and shame are internalized
into an inferiority complex. Moreover, the female fertility instinct further precludes men
with disabilities from the mate selection process. On the contrary, women in most
cultures are not subjected to the same high expectations. Because women tend to be more
religious (Dickie, Ajega, Kobylak, & Nixon, 2006), they can come to terms with their
disabilities knowing adversity and hardship are parts of God’s grand plans.

Contradictory to the conclusion of Attawong and Kovindha (2005), time Since
onset of disability and levels of physical functioning have considerable effects on self-
acceptance of disability. Outright rejection of a disability by people with progressive
disabilities seems to wane noticeably, coinciding with the number of years since
diagnosis. Harrison and her colleagues (2004) speculate that the social and cultural
implications of aging mitigate the demand for being a strong and independent individual.
In other words, as able-bodied persons enter their golden years, they are no longer asked
or expected to play the roles of provider, protector, and dominator. Subsequently, the
confluences of lifestyles between the disabled and the elderly populations help lighten the
stigma and make acceptance of disability easier. Another possible explanation for the
divergence in opinion on acceptance of disability is that people with progressive
disabilities have a better understanding of how their bodies work. They learn new ways to
compensate and adapt to the physiological dysfilnctions that may otherwise aggravate
fatigue and injuries. The perceived rising levels of physical functioning might be in fact
resultant of more efficient use of existing abilities and better conservation of energies.

The current investigation indicates that high hope correlates with high acceptance

of disability. Acceptance of disability does not mean one has given up hope on being

79

restored to his or her premorbid health status. On the contrary, high hope works as a
coping mechanism to fend off psychological distress and anguish. Recognizing the
futility of attempting to undo a disability, however agonizing, is the beginning of a long
sequence of detaching the old identity and creating a new self-image that resonates with
the post-disability psyche. It comes as no surprise that in this study people who are more
accepting of their own disabilities also have better life satisfaction. Increased self-esteem
is instrumental in helping how a person lives with his or her disability. Rejection of a
disabled body is responsible for the high levels of depression experienced among people
who have low body esteem (Taleporos & McCabe, 2002).

It is worthwhile to note the inverse relationship between acceptance of disability
and the importance of religion to self. The puzzling finding that people with strong
religious convictions are less accepting of their own disabilities is difficult to explain.
The hypothesis that people who have strong faith in God, in spite of the presence of a
disability, would have an easier time accepting a life—altering happenstance as they look
forward to living a suffering-free eternal life was not validated. To ask why God allows
tragedy to befall innocent people is a blasphemy, offending firmly held religious beliefs.
Humankind sees judging God’s action as a direct challenge to the biblical teaching of
complete obedience and submission. Therefore, a pious person should reject the disability
and not question God’s motive. Gourgey (1994) states that faith, not healing and
miracles, is the true content of Jesus’ teaching. Divine use of the trials of life forces the
afflicted individuals to reinterpret the meanings of suffering. Cognitive dissonance is
hence created when the perception of incompatibility between the actual disability and

the rhetorical ordeal becomes too stunning. The fact that the current study shows that

80

 

 

people with high spiritual well—being are more accepting of disability refutes the belief
that spiritual well-being and importance of religion mean the same thing to people with
progressive disabilities. As the levels of spiritual well-being increased, problems
pertinent to living with a chronic illness appeared to decrease significantly (Landis,
1996)

Satisfaction with Life

Results of the current study fail to support employment status as a significant
contributor to satisfaction with life among people with progressive disabilities. Contrary
to an Australian study of people with intellectual disability who were placed on the open
competitive market (Eggleton, Robertson, Ryan, & Kober, 1999), being able to hold
down a job does not necessarily translate into personal fulfillment and contentment for
people with progressive disabilities. Although more than half of the research participants
have earned at least a bachelor’s or advanced degree, the startling high unemployment
rates among them reflect a rather bleak yet accurate employment outlook. Moreover, the
issues of being passed over for promotion and continuous underemployment can
adversely afflict their mental health. What frustrates employees with chronic illnesses and
disabilities even more is their inability to quit an unsatisfying job that offers health
insurance coverage.

Life satisfaction is also influenced by martial status according to the present
study. Compared with the married, never having been married and divorced people
indicated lower satisfaction with life. For many people with disabilities, singlehood is not
always a consciously chosen status. Desolation, isolation and a general lack of social

support engender feelings of loneliness. One of the benefits that marriage brings is

81

emotional support. The never married are less likely than the married or divorced to have
a confidant as the frequency of interpersonal, interaction outside of the social realm
decreases substantially in later adulthood (Barrett, 1999).

Contrary to expectations that men with disabilities have a better quality of life
(Riedinger, Dracsup, Brecht, et a1. 2001), this study implies that women with disabilities
seem to be happier. The rise of the human rights movement in recent decades,
particularly for women, the minority and the disabled, has changed the landscape of the
power structure in American society. Perhaps women are more satisfied than men with
the progresses made in education, careers, intimate relationships and social status. By
nature women are also more cooperative, collaborative and gregarious (Catipovic-
Veselica, Ilakovac, Durjancek, Amidzc, et al., 1995). On the other hand, the pressure to
stay on top of the game, driven by unhealthy competitiveness and territorial mentality,
might cause men with or without disabilities alike to feel less satisfied with their lives.

Duration after disability correlating positively with life satisfaction is somewhat
perplexing to explicate. Life satisfaction is subjective and may change in different
contexts and times. No one is more aware of any functional changes in his or her body
than persons with disabilities themselves. They are adroit in adapting to and utilizing
their remaining physical capabilities to the fullest extent. Rehabilitation theories posit that
adaptation to a disability is an ongoing instead of a static learning process. As the
intensity of initial feelings of anger, confusion, and embarrassment subsides over the
years, disability is then infused into the overall self-identity. Disability becomes part of
but not the only defining trait of that individual.-Life satisfaction in people with

disabilities will remain low if they fail to move forward with their lives. To pursue more

82

achievable goals they may alter their original ones. This sense of accomplishment feeds
off self-worthiness, which in turn greatly enhances the perceived quality of life.

The finding of this study indicates that participants with high hope reported
enjoying high life satisfaction. Earlier research has documented Similar results among
people with spinal cord injuries (Elliott, Witty, Herrick, & Hoffman, 1991). It is a cliché
to say that life without hope is meaningless. Hope symbolizes the light at the end of the
tunnel to many individuals who have been scarred physically and emotionally following
the occurrence of a disability. Realizing that hope offers a vision of how one could
transform a grim situation to a better tomorrow is critical to heightening satisfaction with
life. The positive effects of spiritual well-being on the level of life satisfaction
exemplified by research participants in the current study further reinforces that the
contemplation of priorities in life is indeed a cognitively learned process.

The present investigation finds a Significant relationship between high levels of
physical functioning and satisfaction with life. Hope mediates the relationship between
perceived functional ability and c0ping (Jackson, Taylor, Palmatier, Elliott, & Elliott,
1998). Underlying the interrelatedness of hope, functional ability and life satisfaction is
society’s premium value on independence and self-reliance. Dutch researchers (Post, de
Witte, van Asbeck, et al., 1998) have found that perceived self-care abilities in people
with spinal cord injuries are an accurate predictor of life satisfaction. Life satisfaction is
influenced by an individual’s functional ability to perform basic hygiene-related activities
such as bathing, feeding, dressing, and toileting (Hicken, Putzke, Novack, et al., 2002).
Autonomy, self-control, and self—determination are integral to the psychological

empowerment of people with disabilities.

83

Future Time Orientation

An unexpected result of the current study is the contrasting view toward future
time orientation between individuals with neuromuscular diseases and those with
neurological diseases. The latter group appears to gravitate more toward the distant
future. While both types of disabilities are characterized by ineluctable physical
deterioration and in some cases cognitive decline as well, the rapidness and course of
degeneration may set them apart. The life expectancy of people with multiple sclerosis is
normally longer than for those with muscular dystrophy. Someone with Duchenne
muscular dystrophy, who normally does not live beyond the second decade, is likely to

envision the clock ticking down faster than usual.

 

Given the unpredictable nature of progressive disabilities, it is not astounding to
find people with full-time employment are low on future time orientation. The unusually
high prevalence of involuntary retirement in this population demonstrates the worries and
fears they have when planning long-term professional goals. The devastating effects of
uncontrollable rapid spurts of muscle atrophy and diminished cognitive function can have
a disastrous impact on the ability to conduct simple activities of daily living. The one-
day-at-a-time approach to overcome uncertainties must not be mistaken as mere 1
maladjusted pathological responses to highly stressful demands of life.

The present study was unable to establish mediating effects of acceptance of

 

disability and employment status on the relationship between future time orientation and
life satisfaction. The absence of a relationship between future time orientation and life
satisfaction has already been speculated about in the preceding paragraphs. People with

progressive disabilities are so engrossed in maintaining the present levels of physical

84

functioning that they either will not or do not want to think too far ahead about what
might happen in the future.
Other Emerging Themes

Availability of accessible transportation emerges from the analysis of qualitative
data as an urgent issue. This finding echoes the same concern of Swedish people with
muscular dystrophy (Bostrom & Ahlstrom, 2004). Low-income status means that private
vehicles that require expensive adaptations are beyond the means of people with
disabilities. Likewise, the provision of public transport subsidies tends to fluctuate with
the existing political climate and economic trends. With no reliable accessible buses and
vans available to people with mobility and sensory impairments, their freedom of
movement, which leads to independence, recreation, and employment, is severely
compromised.

Consistent with previous research on dating and marital issues in other disability
groups, the present qualitative data show that peOple who have been diagnosed with
neuromuscular and neurological diseases experience dissatisfaction with forming and
maintaining intimate relationships with the opposite sex. This frustration comes from
poor perception of self-image and disinterest in people without disabilities. Deprived of
the courtship skills normally developed during the teenage period, many people
diagnosed with neuromuscular and neurological diseases do not know how to initiate
friendships in an appropriate manner. Fear of rejection paralyzes people with progressive
disabilities from approaching persons in whom they are interested. For those whose onset
of disability occurs after they enter a marriage or relationship, the spouse or partner tends

to assume the role of caregiver. Many marriages and relationships fall apart eventually

85

because the caregivers never quite anticipate the physical and psychological demands of
tending partners with disabilities. The restriction on personal time for recreational
activities and work grows to be a huge stressor.

The high probability of passing on hereditary diseases to the next generation
worries many married couples and those who plan to enter long-term, committed,
monogamous relationships. They are absolutely torn at the gloomy prospect of seeing
their children endure the exact struggles and discrimination they have dreaded so much as
persons with progressive disabilities. Moreover, a sound decision to determine whether
the joy of parenthood would outweigh the astronomical costs of lifetime health care for
that child is next to impossible to arrive at when being pressured from both sides by
eugenics and pro-life proponents. Most importantly, no informed parents in the whole
world would want to live with regrets about a difficult decision they made years ago.

Although the scores on the revised AD scale seem to be relatively high, findings
from the qualitative data suggested otherwise. One plausible explanation is that the
instrument may not accurately measure acceptance of disability and life satisfaction from
a multidimensional perspective. Another possibility is that it is human nature to fear
uncertainty. Self-acceptance of disability may help people with progressive disabilities to
recognize and redefine their disability identity; however, worries about the future persist.
A third possibility is that the negative wording used in the qualitative research questions
may have contributed to the observation of the participants’ pessimistic outlook on life
satisfaction.

Some other surprising findings emerged, including the lack of association

between employment status and life satisfaction. People with severe disabilities who have

86

never worked in their whole life can still be content because nobody expects them to
make a living for themselves. Their urgency to enter the job market may be weak because
of society’s lowered expectations for them and because monetary support from social
welfare programs removes pressure from people with progressive disabilities to
aggressively search for gainful employment and to construct a career path. The absence
of a correlation between employment status and life satisfaction for those who currently
work or who had worked in the past is intriguing. It could be that people with progressive
disabilities were resigned to the necessity of early retirement because of their declining
physical condition. In addition, early retirement in their 508 and 608 may seem an
acceptable deal when they are eligible to receive benefits from Social Security Disability
Insurance or Supplementary Security Income.
Limitations of the Study

Several caveats must be considered when interpreting the present study’s
findings. The sample’s small size is problematic. The prevalence numbers for muscular
dystrophy and multiple sclerosis in the US. are estimated at about 200,000 (Siegel, 1999)
and 350,000 (Brandes & Willmott, 2002), respectively. Admittedly, it would be
imprudent to conclude that the responses of the 228 participants, a tiny fraction of this
population, reflect those of the majority who were not polled in the current study. MD
consists of some 40 different types of muscle diseases including amyotrophic lateral
sclerosis (ALS). Duchenne the most common affects males, although other types affect
females. MS also affects both sexes but it seems to disproportionately occur in Caucasian
women living in regions away from the equator. Within the present sample, almost 90%

of the respondents claimed to be of European American descent. Therefore, the sample

87

 

population’s homogeneity may limit the ability to generalize the results of ethnic
minority members with progressive disabilities.

To avoid inundating prospective study participants with too many survey items,
proven standardized instruments were not used to measure either the constructs of the
levels of physical functioning or the importance of religion. Rather, estimation was
derived from the self-report of the participants’ subjective perception of their own
physical well-being and religiousness. Another possible shortcoming that might
invalidate the results’ generalization is the under-representation of Buddhists and
Muslims in the datasets. Christian values and beliefs perhaps influence the nature of the
results collected.

It is not feasible to extrapolate the personality and attitudinal differences between
people with progressive disabilities who chose to take part in the study and those who did
not. Only about half of the participants answered the two open-ended qualitative research
questions. This lack of the overall sample’s full participation somewhat curtails the valid
representation of participants’ views toward certain themes and issues, as evidenced in
the apparent contradiction between quantitative and qualitative data. Finally, the two
open-ended questions might have unintentionally been stated in a way that skewed to less
positive comments and a more downbeat perception of the disability and its adverse
effects on life perspectives.

Implications
Implications for Rehabilitation Practice
The benefits of having a strong support system for a person with a disability are

indisputable and well documented in psychological and social research. However,

88

permanent disability alters not only the lives of the care recipients but also the lives of the
care providers. The need for around-the-clock continuous physical tending can take a toll
on the most patient and caring person. Declines in spousal impairment and caregiver
strain have been found to correlate to increased anxiety and depression (Beach, Schultz,
Yee, & Jackson, 2000). Cannuscio, Jones, Kawachi, Colditz, et al. (2002) concurred with
similar conclusions in a four-year longitudinal study of spousal caregiving
responsibilities and mental health. Women who provided care to a disabled or chronically
ill spouse were almost six times more likely to exhibit depressive and anxious symptoms
than noncaregivers. Indeed, prevention of caregiver burnout is an issue that has not been
talked about much in part due to the reluctance on the part of family members and
spouses to admit their own emotional and physical drains. The pressure is particularly
acute in the Asian American and Hispanic communities where societal expectations
about caring for disabled and chronically ill parents and spouses are high and deeply
engrained. Rehabilitation counselors, when appropriate, need to explicate to their clients
and family members that placement in a community-based, long—term care facility is not
equivalent to abandonment of loved ones. Vulnerability also makes people with
progressive disabilities easy targets for mistreatment. To protect the clients, rehabilitation
counselors must detect any signs of spousal and familial neglect and abuse. Conversely,
support group meetings for caregivers and identification of resources within the V
community will no doubt help caregivers alleviate their pent-up negative energies, such
as tension and stress.

Improving rehabilitation counselors’ understanding of the progressive nature of

neuromuscular and neurological diseases has important implications for writing short-

89

 

term and long-term vocational rehabilitation plans. In circumstances in which uncertainty
is likely to impede fruition of positive vocational outcomes, rehabilitation counselors
need to be able to foresee possible challenges their clients might face in 3, 5 and 10 years
down the road. Advocating employment rights for people with disabilities and educating
prospective and current employers on compliance with the ADA and provision for job
accommodations will be key to keeping people with progressive disabilities in the
workforce.

Social and cultural forces have immense influences in shaping the collective
attitudes toward disability. Humankind has been using religion and pseudoreligion to
explain the occurrence of tragic, catastrophic and joyful events since the beginning of
recorded civilization. Organized religion provides psychological relief to the masses who
are experiencing internal mental anguish. Therefore, rehabilitation counselors should
consider incorporating different counseling modalities to dispel myths about disability as
God’s punishment. A prime example is cognitive behavioral therapy, which aims at
helping a client to disconnect a distorted picture of bothersome situations from unhealthy
and improper reactions. Rehabilitation counselors attempt to convince their clients that
disabilities are not divine retributions for indiscretion and transgressions. Nothing
productive will come for the clients if they are fixated on finding a seemingly nonexistent
answer. On the other hand, referral to church clergies for counseling is most effective
when working with clients who are deeply religious and pious.

Learned helplessness attributes to low self-esteem and lack of assertiveness
prevalent in such oppressed groups of people as domestic violence victims and persons

with disabilities, who tend to perceive themselves as powerless. Such a psychological

90

impasse usually stems from the faulty thought that their efforts in command of life events
will be ineffective. Successful job placement and rehabilitation service outcomes lie
largely in rehabilitation clients’ preparedness of vocational skills, as well as their mental
readiness to work. Rehabilitation counselors can play a vital role in helping persons with
disabilities transcend feelings of hopelessness and uncertainty in the face of adversity.
Directions for Future Research

Psychology theorists and social scientists have presented an array of suppositions
in an attempt to unlock the myths of human cognitive adaptation and psychological
defense mechanisms in unfamiliar intimidating situations. Although the call for
secularism in governmental and judicial affairs has gained steadfast support in the
increasingly diverse American society, it would be nonetheless of great benefit for
rehabilitation researchers to identify and differentiate the coping strategies utilized by
religious and nonreligious people with disabilities alike. With 49 participants in the
present study atheists and agnostics, the numbers are too large not to be reckoned with by
service providers as a unique subgroup of the rehabilitation population.

To enhance the generalizability of the findings, this study could be replicated in
other types of disability groups to corroborate how disposition to future time orientation
might exert influence on the rehabilitation client’s preference in choosing short-term over
long-term vocational plans or vice versa. People with disabilities’ perceived uncertainty
about the unpredictable progression of disability may instill in them a strong urgency to
accomplish personal and vocational goals on a pace that is fast relative to people without
progressive disabilities. It is therefore highly recommended that a future direction for

research concentrates on seeking additional factors that contribute to the lessening of

91

death anxiety and better mental preparation for the ever-deteriorating physical
functioning.

One crucial topic for future empirical studies on life satisfaction will be the
development of a structural model to evaluate the theoretical assumptions of self-
acceptance of disability and spiritual well-being. Due to the present study’s small sample
size, statistical analyses of the present study were limited to the use of a series of multiple
regressions. In general, an effective structural equation modeling (SEM) requires a
sample size of not less than 300. Klein (1998) states that SEM provides a far more
rigorous alternative to multiple regressions to testing an overall fit of a proposed model to
the data by inspecting many relationships among interdependent variables
simultaneously.

Buddhism, Islam, Hinduism, and Eastern Orthodox Christianity have flourished in
recent years as more non-European immigrants settle in the U.S. Because European-
American Christians comprise the majority of rehabilitation practitioners, there is an
urgent need for them to grasp different religions’ dogmatical interpretations of the
meanings of disability, of suffering, and of eternal life. This could be done by conducting
surveys in the communities that subscribe to non-Judaeo-Christian beliefs or by
interviewing their religious and spiritual leaders at places of worship.

Health, in physical and mental forms, affects the quality of life in persons with
disabilities and their ability to search and maintain gainful employment. The emergence
of positive psychology offers rehabilitation researchers an exciting new arena to examine
health outcomes and human strength and virtue. Further understanding is needed of this

body of knowledge, particularly how living with uncertainty and unpredictability can

92

 

 

moderate adjustment to disability. More importantly, future studies must emphasize the
importance of promoting personal well-being by highlighting the gradual shift in focus
from a decrease in pathology to an increase in untapped potential and potency.
Conclusion

The objective of this investigation was to better understand the unpredictable
nature of progressive disability in relation to satisfaction with life. Specifically, the study
attempted to examine the issues and effects of self-acceptance of disability, spiritual well-
being, future time orientation, and hope in people with incurable neuromuscular and
neurological diseases. The results suggested that life satisfaction was positively
correlated with Spiritual well-being, hope, and acceptance of disability. In the analysis of
future time orientation, respondents with neurological disorders had higher scores, and
full-time employment was associated with lower scores. Self-acceptance of disability was
positively correlated with hope, spiritual well-being, and physical functioning, and
negatively correlated with future time orientation. However, the results failed to establish
the mediating effects of acceptance of disability and employment status on the
relationship between future time orientation and life satisfaction. Finding means of
accessible transportation remains a daunting barrier to the seeking of independence and
employment for people with mobility and sensory disabilities. Another controversial
theme is the benefits and costs of bringing babies replete with cureless hereditary
diseases to the world. Despite the present study’s limitations, it has added new
understanding of life satisfaction and acceptance of disability in relation to people with

progressive disabilities.

93

 

 

APPENDICES

94

Appendix A
Self-Introductory Letter
Dear Program Director,

My name is Roy Chen and I’m a PhD. Candidate in the Rehabilitation Counseling
Program in the Department of Counseling, Educational Psychology, and Special
Education in the College of Education at Michigan State University. I’m writing to
request your kind assistance to help me recruit participants for my dissertation research.

The purpose of my study is to explore the joint contribution of demographic variables,
hope, religiosity, future time orientation, disability acceptance, and physical function to
life satisfaction and employment status in people with multiple sclerosis. The Short time
your clients spend filling out this survey will generate useful information for
rehabilitation professionals to deliver better rehabilitation services.

Also attached is an abbreviated curriculum vitae for your reference. It contains my
academic training, professional experience, and selected publications. I will conduct this
study independently under the supervision of my major professor, Dr. Nancy Crewe. I
will be contacting you by phone in a few days. I hope you will give me an opportunity to
discuss my study with you in length. Thank you very much.

Sincerely,

Roy Chen, PhD. Candidate, CRC CC:

Michigan State University Nancy Crewe, Ph.D., CRC, LP, ABPP
College of Education Professor

Rehabilitation Counseling Program Michigan State University

935 Cherry Lane # D College of Education

East Lansing, MI 48823 Rehabilitation Counseling Program
(517) 355 —8091 459 Erickson Hall

chenroy@msu.edu East Lansing, MI 48824-1034

 

(517) 432-0606
ncrewe@msu.edu

 

95

 

 

Appendix B
Life Satisfaction Among People With Progressive Disabilities
Consent Form

In this study you will be asked to fill out a questionnaire regarding your attitudes and
feelings about self-acceptance of disability and life satisfaction. It will take 15 to 20
minutes to complete the survey.

Your participation in this Study is voluntary and will be used for research purposes only.
You may discontinue participation at any time. Results of the study will report only
aggregate findings from the group, and no individuals will be identified.

The first 100 participants who complete all parts of the survey will each receive a $5
check in appreciation for their time. If you would like to be eligible to receive the $5
check, please provide your name and mailing address in the space below.

YOU INDICATE YOUR VOLUNTARY AGREEMENT TO PARTICIPATE BY
COMPLETING AND RETURNING THE QUESTIONNARE.

If you have any questions regarding this research study, please contact:

Roy Chen, Ph.D. Candidate
Michigan State University
935 Cherry Lane # D

East Lansing, MI 48823
(517)355-8091
chenroy@msu.edu

Peter Vasilenko, Ph.D., Chair

The University Committee On Research Involving Human Subjects
Michigan State University

202 Olds Hall

East Lansing, MI 48824

(517)355-2180

vasilcnk@msu.edu

 

 

 

Cut and mail with the questionnaire

Name:

Address:

96

Debriefing

Thank you very much for participating in this research study. The purpose of this project
is to understand the relationship between life satisfaction and self-acceptance of disability
in people with progressive disabilities. Your participation will contribute to this important
knowledge base.

I expect to have the results analyzed by May 2006 and if you are curious about the
findings, please contact me at chenroy@msu.edu or (517) 355-8091. Questions asked in
the survey may evoke your thoughts and feelings about your own disability. Although
there are no foreseeable risks, please read the suggested book or use the online
counseling and support groups provided by the National Multiple Sclerosis Society or the
Muscular Dystrophy Association should you experience emotional issues.

 

Smart, J. (2001). Disability, society, and the individual. Gaithersburg, MD: Aspen
Publishers, Inc.

97

 

 

Appendix C

Recruitment Flyer

 

 

98

Research Participants

Wanted
Study On Life Satisfaction

People With Disabilities

 

 

Researchers at Michigan State University are interested in
studying the relationship between acceptance of disability
and life satisfaction in people with progressive disabilities.

IF YOU
0 Are 18 years of age or older
0 Have been di‘ gnosed with neuromuscular diseases

(e.g. muscular dystrophies, motor neuron diseases) or
neurological disorders (e.g. multiple sclerosis)

r338“

First 100 participants who complete all parts of the survey
will each receive $5 in appreciation for their time. Please
respond by March 31, 2006.

This survey contains 83 questions, which will require about 15 to 20
minutes to complete.

You are cordially invited to take part in this research study. T o obtain
a copy of the questionnaire or instructions for completing the survey
online, please contact Roy Chen at (517) 355-8091; chenroygastu.edu

If you have questions or concerns about this study, please contact Dr.
Nancy Crewe, (517) 432-0606, e-mail: ncrewe@msu.edu, or regular
mail: 459 Erickson Hall, East Lansing, MI 48824.

 

Appendix D
Demographic Questionnaire

Please circle the answer that best describes you. It is extremely important that you answer
every question. Thank you for your cooperation.

Sex:
1. Male
2. Female
Age:
Race/Ethnicity:
1. Caucasian
2. African American
3. Hispanic
4. Asian or Pacific Islander
5. American Indian or Alaskan Native
6. Multiracial
7. Other, please specify

Where are you located?

Religion:
1. Buddhism
2. Catholic
3. Judaism
4. Muslim
5. Protestant
6. Other, please specify

How important is religion to you? ( l = very unimportant, 5 = very important)

 

1 2 3 4 5
Marital Status:

1. Never married

2. Married

3. Divorced

4. Widowed

Level of Education:
1. Less than high school
2. High school

100

 

3. Associate degree (e. g. AA)
4. Bachelor’s degree (e.g. BA)
5. Graduate degree (e.g. MA, PhD)

Current Employment Status:
1. Employed full-time (40 hours/week or more)
2. Employed part-time (less than 40 hours/week)
3. Self-employed
4. Retired
5. Homemaker
6. Student
7. Unemployed
Type of Disability: 5
l. Neuromuscular diseases (e.g. Duchenne, Becker, ALS, Myasthenia Gravis) '
Please specify

 

2. Neurological disease (e. g. Multiple Sclerosis, Parkinson’s Disease)
Please specify I ‘

 

 

How long have you been diagnosed with this disability? years

In what ways does progressive disability affect the pursuit of personal goals such as
employment and romantic relationships?

How does the uncertainty of progressive disability influence life perspectives?

101

Appendix E
The Satisfaction With Life Scale

Instructions: Please use one of the following numbers from 1 to 7 to indicate how much
you agree with or disagree with the following statements.

7 = Strongly agree

6 = Agree

5 = Slightly agree

4 = Neither agree nor disagree
3 = Slightly disagree

2 = Disagree

1 = Strongly disagree

In most way my life is close to my ideal.

The conditions of my life are excellent.

I am satisfied with my life.

So far I have gotten the important things I want in my life.
If I could live my life over, I would change almost nothing.

9:593"?

102

 

 

Appendix F
The Hope Scale (The Goals Scale)

Direction: Read each item carefully. Using the scale shown below, please select the
number that best describes YOU and put that number in the blank provided. Thank you.

1 = Definitely False
2 = Mostly False
3 = Mostly True
4 = Definitely True

__ 1. I can think of many ways to get out of a jam.

__ 2. I energetically pursue my goals.

_ 3. I feel tired most of the time.

__ 4. There are lots of ways around any problem.

__ 5. I am easily downed in an argument.

__ 6. I can think of many ways to get the things in life that are most important to
me.

__ 7. I worry about my health.

_ 8. Even when others get discouraged, I know I can find a way to solve the
problem.

9. My past experiences have prepared me well for my future.
10. I’ve been pretty successful in life.
11. I usually find myself worrying about something.
12. I meet the goals that I set for myself.

103

 

 

Appendix G
The Spiritual Well-Being Scale

For each of the following statements, circle the choice that indicates the extent of your
agreement or disagreement as it describes your personal experience:

SA = Strongly Agree D = Disagree
MA = Moderately Agree MD = Moderately Disagree
A = Agree SD = Strongly Disagree
1. I don’t find much satisfaction in private prayer with SA MA A D MD SD
God.
2. I don’t know who I am, where I came from, or SA MA A D MD SD
where I am going.
3. I believe that God loves me and cares about me. SA MA A D MD SD
4. I feel that life is a positive experience. SA MA A D MD SD
5. I believe that God is impersonal and not interested in SA MA A D MD SD
my daily situations
6. I feel unsettled about my future. SA MA A D MD SD
7. I have a personally meaningful relationship with SA MA A D MD SD
God.
8. I feel very fulfilled and satisfied with life. SA MA A D MD SD
9. I don’t get much personal strength and support from SA MA A D MD SD
my God.
10. I feel a sense of well-being about the direction my SA MA A D MD SD
life is headed in.
11. I believe that God is concerned about my problems. SA MA A D MD SD
12. I don’t enjoy much about life. SA MA A D MD SD
13. I don’t have a personally satisfying relationship with SA MA A D MD SD
God.
14. I feel good about my future. SA MA A D MD SD
15. My relationship with God helps me not to feel SA MA A D MD SD
lonely.
16. I feel that life is full of conflict and unhappiness. SA MA A D MD SD
17. I feel most fulfilled when I’m in close communion SA MA A D MD SD
with God.
18. Life doesn’t have much meaning. SA MA A D MD SD
19. My relationship with God contributes to my sense of SA MA A D MD SD
well-being.
20. I believe there is some real purpose for my life. SA MA A D MD SD

Note: Items are scored from 1 to 6, with the higher number representing more well-being.
Negatively worded items (#1, 2, 5, 6, 9, 12, 13, 16, 18) are reversed scored. Odd number
items assess religious well-being; even numbered items assess existential well-being.

104

 

Appendix H
The Future Time Orientation Scale
Instructions: Please answer all of the following questions concerning your view of time:
4 = Is not at all true of me
3 = IS not too true of me

2 = Is fairly true of me
l= Is very true ofme

 

l. I always seem to be doing things at the last moment. 1 2 3 4
2. I have been thinking a lot about what I am going to do in the future. 1 2 3 4
3. I find it hard to get things done without a deadline. 1 2 3 4
4. I need to feel rushed before I can really get going. 1 2 3 4
5. Half a year seems to me a long time. 1 2 3 4
6. I think about the future only to a very small extent. 1 2 3 4
7. I am most concerned about how I feel now in the present. 1 2 3 4
8. I am not so very much concerned about things a little ahead in time. 1 2 3 4
9. It's really no use worrying about the future, because what will be, will 1 2 3 4
be.
10. I reflect a great deal about the future, and I feel it is rapidly 1 2 3 4
approaching.
l 1. It often seems like the day will never end. 1 2 3 4
12. I often find myself looking for ways to kill time. 1 2 3 4
13. The future seems very vague and uncertain to me. 1 2 3 4
14. Usually I feel time is going too fast. 1 2 3 4

 

105

Appendix I
The Acceptance of Disability Scale-Revised

Instructions: Please read each statement below and circle the number that indicates to
what extent you agree or disagree with the statement.

1 = Strongly disagree
2 = Disagree

3 = Agree

4 = Strongly agree

1. With my disability, all areas of my life are affected in some 1 2 3 4
major way.

2. Having my disability, I am unable to do things like people 1 2 3 4
without disabilities do.

3. Disability or not, I am going to make good in life. 1 2 3 4
4. Because of disability, I have little to offer other people. 1 2 3 4
5. Good physical appearance and physical ability are the most 1 2 3 4

important things in life.
6. A person with a disability is restricted in certain ways, but 1 2 3 4
there is still much s/he is able to do.

7. No matter how hard I try or what I accomplish, I could I 2 3 4
never be as good as the person who does not have my
disability.
8. It makes me feel very bad to see all the things that people 1 2 3 4
without disabilities can do that I cannot.
9. The most important thing in this world is to be physically 1 2 3 4
capable.
10. Because of my disability, other people’s lives have more 1 2 3 4
meaning than my own.
11. Because of my disability, I feel miserable much of the 1 2 3 4
time.
12. Though I have a disability, my life is full. 2 3 4
13. The kind of person I am and my accomplishments in life 1 2 3 4
are less important than those of persons without
disabilities. _
14. A physical disability affects a person’s mental ability. 1 2 3 4
15. Since my disability interferes with just about everything I 1 2 3 4
try to do, it is foremost in my mind practically all of the
time.
16. There are many things a person with my disability is able 1 2 3 4
to do.
17. My disability in itself affects me more than any other 1 2 3 4

characteristics about me
18. There are many more important things in life than physical 1 2 3 4

106

 

19.

20.

21.

22.

23.

24.
25.

26.

27.

28.
29.

30.

31.

32.

ability and appearance.

Almost every area of life is closed to me.

My disability prevents me from doing just about
everything I really want to do and from becoming the kind
of person I want to be.

I feel like an adequate person regardless of the limitation of
my disability.

My disability affects those aspects of life that I care most
about

A disability such as mine is the worst possible thing that
can happen to a person.

You need a good and whole body to have a good mind.
There are times that I completely forget that I have a
disability.

If I didn’t have my disability, 1 think I would be a much
better person.

When I think of my disability, it makes me so sad and
upset that I am unable to do anything else.

People with disabilities are able to do well in many ways.
I feel satisfied with my abilities and my disability does not
bother me too much.

In just about everything, my disability is annoying to me so
that I can’t enjoy anything.

Physical wholeness and appearance make a person who
s/he is.

I know what I can’t do because of my disability, and I feel
that I can live a full life.

107

NM

bk

 

 

 

 

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