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Coping Strategies Of Three Adolescents With Disabilities

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Coping Strategies Of Three Adolescents With Disabilities

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COPING STRATEGIES OF
THREE ADOLESCENTS WITH DISABILITIES
by
Carol Deming Simpson
A Thesis Presented to the
FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
MASTER OF ARTS
(Occupational Therapy)
December, 1995
©1995 Carol Deming Simpson
UMI Number: 1378435
UMI Microform 1378435
Copyright 1996, by UMI Company. All rights reserved.
This microform edition is protected against unauthorized
copying under Title 17, United States Code.
UMI
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Ann Arbor, MI 48103
UNIVERSITY O F SO U T H E R N CALIFORNIA
T H E GRADUATE SC H O O L
U N IV ER SITY PA RK
L O S A N G E L E S. C A L IF O R N IA 9 0 0 0 7
This thesis, written by
C a ro l Deming Sim pson
under the direction of he.r. Thesis Committee,
and approved by all its members, has been pre
sented to and accepted by the Dean of The
Graduate School, in partial fulfillment of the
requirements for the degree of
Dean
Date....
THESIS COMMITTEE
Chairman
This volume is dedicated to
Don, my husband,
for all of his loving support,
and to my family.
May God bless us,
every one.
TABLE OF CONTENTS
LIST OF FIG URES.....................................................................................................v
ABSTRACT .............................................................................................................. vi
Chapter
I. INTRODUCTION TO THE PROBLEM .................................... 1
Goals .................................................................................................... 2
Research Design ................................................................................ 3
Questions This Study Addresses .............................................. 10
Limitations of This Study ........................................................... 11
Conclusion ....................................................................................... 12
II. LITERATURE REVIEW ................................................................ 13
Sociocultural Views of A d o lescen ce......................................... 13
Overview of Adolescent D ev elo p m en t.................................... 15
Mainstreaming and Inclusion .................................................... 22
Possible Sources of Threat or Challenge
in the Mainstream Context ......................................................... 47
Discussion ....................................................................................... 52
Theories of Coping ........................................................................ 56
Coping and Disability ................................................................... 60
Coping Research ............................................................................. 62
Coping and Occupational Therapy ......................................... 78
Discussion and Conclusion ......................................................... 82
III. METHODOLOGY .......................................................................... 86
Research Approach ........................................................................ 86
Subject Selection ............................................................................. 87
Instrumentation ............................................................................. 88
Researcher Bias ................................................................................ 92
Methodological Protocol .............................................................. 93
Conclusion ....................................................................................... 98
IV. RESULTS .......................................................................................... 99
The Context .................................................................................. 101
Narrative Number One .............................................................. 105
Narrative Number Two ........................................................... 121
Narrative Number Three ......................................................... 138
Conclusion ..................................................................................... 152
V. SUMMARY AND DISCUSSION .......................................... 153
Who Gets Included in General Education? ........................ 157
Biding Time or Experiencing Challenge? ............................. 160
Figures 1 Through 6 ................................................................... 162
Portraits of Coping ..................................................................... 164
Scott ................................................................................................. 165
Jason ............................................................................................... 172
Anne ............................................................................................... 179
Reflections of the Researcher .................................................... 185
H ow Occupational Therapy Can Help ................................... 191
Suggestions for Future Research................................................ 192
Final Summary and Conclusion................................................. 193
BIBLIOGRAPHY ............................................................................................... 196
APPENDICES .................................................................................................... 212
A. Letter of Informed Consent— Participant................................ 212
B. Letter of Informed Consent— Teacher ..................................... 215
C. Student Interview Format .......................................................... 218
D. Teacher Interview Format ......................................................... 220
E. Model of Triangulation ............................................................... 222
F. Categorical Data— Scott ............................................................... 224
G. Categorical Data— Jason ............................................................... 229
H. Categorical Data— Anne ............................................................... 233
I. Categorical Data— The C o n te x t.................................................. 238
J. Definition of T e r m s ...................................................................... 243
iv
FIGURE
LIST OF FIGURES
1. Scott’s Coping Strategies ............................................................ 167
2. Scott’s Sources of Challenge ..................................................... 168
3. Jason’ s Coping Strategies .......................................................... 174
4. Jason’s Sources of Challenge ..................................................... 175
5. Anne’s Coping Strategies .......................................................... 181
6. Anne’s Sources of Challenge ..................................................... 182
v
ABSTRACT
This study explored the coping strategies of three students with
disabilities during daily activities in a general education high school
context. Coping was defined as “those efforts exerted to maintain balance
in the face of threat or challenge.” This qualitative study explored
student’s subjective experiences of such threat or challenge. Descriptive
data of coping behavior were collected, via student interviews, teacher
interviews, and researcher observation, pertinent to architectural,
attitudinal, and/or systemic barriers, and are presented in the form of
emplotted narratives. Results found that uses of coping strategies varied,
reflecting the meaning of the strategy used within each student’s life
context. Important coping strategies used included taking direct action to
solve problems, confrontation of responsible persons, and persistence.
Parental advocacy and student assertiveness in negotiating the
Individualized Education Program were found to be important elements
associated with inclusive education, in this context.
Chapter I
INTRODUCTION TO THE PROBLEM
The present study explored how adolescents with physical and
developmental disabilities cope with the threats or challenges they
experience in a general education high school context. It was an
assumption of this study that a change of social and academic setting,
from segregated education to integrated or mainstream education, was
likely to bring about experiences that may be threatening or challenging
for some individuals. This study sought to gain information about what
situations in the high school environment are experienced as threatening
or challenging for students with disabilities, and what strategies, if any,
these students used to cope with such threats or challenges.
It has long been known that people with physical disabilities have
occupied a marginal social status (Brill, 1994; Goffman, 1963; Gliedman &
Roth, 1980). This marginal status may be related to the stigma assigned
to visible, physical difference, and it is thought that separation from the
mainstream of social activity helps to maintain this status (Brill, 1994;
Murphy, Scheer, Murphy, & Mack, 1988). With the passage of P.L. 94-142
1
(1975), students with disabilities were given rights to receive an equal
and appropriate education, including contact with their non-disabled
peers, in the least restrictive environment. A change of this potential
magnitude, from marginal, separate status to equal, integrated status,
requires much beyond the legislation itself (Wisniewski and Alper, 1994).
It is hoped that systemic, architectural, and attitudinal changes are in the
process of being realized in the efforts to carry out the law.
Yet, w e know that humans do not deal w ell with difference (Crewe
& Zola, 1989). According to Eisenberg (1982), humans deal with such
differences by classifying and assigning labels to everything in the
environment, including people, to reduce anxiety over any threat to
survival that unfamiliar objects might represent. It is the devaluation of
difference which is of concern in this study of adolescents with
disabilities. Perhaps human society may be coming to realize that such
devaluation of difference is too often more destructive than constructive.
GOALS
The goals of this study were the following:
1 . To gather qualitative data through student interviews, teacher
interviews, and researcher observation, about what threats or challenges
were perceived to exist in the high school context for adolescents with
disabilities.
2. To gather qualitative data, through student interviews, teacher
interviews, and researcher observation, about what students with
disabilities did to cope with perceived threats or challenges.
RESEARCH DESIGN
The method of research chosen for this study was qualitative because
it was thought that the subject matter would be best understood with the
use of a naturalistic method (Taylor, 1988; Stainback & Stainback, 1984a;
Fourqurean & LaCourt, 1990). This section will define the concepts
coping and mainstreaming, and will present a discussion of the fit of this
subject matter to naturalist methods.
According to Lincoln and Guba (1985), naturalists view reality, as
humans experience it, as made up of multiple constructed realities which
can only be studied holistically. This idea is in contrast to the positivist
view which holds that there exists one objective reality which can be
known and controlled through the study of its parts. Coping, for the
purpose of this study is defined as the effort exerted to maintain one’s
physiological, emotional, cognitive, and/or psychosocial balance in the
face of threat or challenge (Monat & Lazarus, 1991). It is understood to
be a subjective experience in which the individual determines what
stimuli in the internal or external environment constitute threat or
challenge according to his or her personal agenda. Coping, according to
3
this definition, is a matter of personal meaning to each individual. The
meaning of coping varies with the person and with the person’s beliefs
about what is occurring within the context of his or her own life (Seiffge-
Krenke, 1993). This view of coping fits well with the naturalist’s view of
multiple constructed realities which must be understood holistically.
Each individual constructs his or her own beliefs about what may or may
not be coped with in every day life and these choices about how to cope
w ill only make sense individually and within the person’ s total life
context, as an aggregate.
Since coping is subjective and varies with the individual and even
within the individual, the meaning of specific coping behaviors for the
subject must be observed, verified and made clear, through interaction
between the researcher and subject. The researcher, in clarifying data,
becomes involved with the subject and has an influence on the subject
and vice-versa. This fits with the naturalist paradigm in which "knower
and known are inseparable” (Lincoln & Guba, 1985, p. 37). This is in
contrast to the positivist view in which the researcher works to maintain
objective distance from the subject to be studied in order to avoid such
influence.
The subjective nature of coping, also makes generalization to a
broad segment of the population difficult, as is the case in much of
4
naturalistic study (Lincoln & Guba, 1985). Specific coping strategies of
individuals in a given context could not be expected to occur in the same
w ay for other individuals because the subjective meaning of an
environmental stimulus or of a coping strategy would likely be different
from one person to another.
While a positivist view of research would hold that the results of
study should be time and context free, naturalists believe that any study
dealing with an open system, especially human behavior, cannot
realistically be viewed as either time or context free (Lincoln & Guba,
1985). This is true of researcher’s views of coping behavior. Coping
behavior is view ed by some researchers as part of a stable personality
pattern, which can then be predicted to occur in other contexts (Scheier,
Carver, and Weintraub, 1989; Krohne and Rogner, 1982). However, even
these researchers recognize that the choice of specific coping behavior
and the manner in which it is executed could not always be predicted in
any situation. Many researchers on coping agree that coping behavior
may vary both within the individual and within the context, across time
(Monat & Lazarus, 1991; Folkman & Lazarus, 1985; Seiffge-Krenke, 1993).
The naturalist paradigm focuses on the mutually shaping factors of
all entities rather than on cause and effect (Lincoln & Guba, 1985).
Coping fits w ell within this premise, since many authors are in
agreement that simple cause and effect thinking cannot provide
5
understanding of coping behavior (Haan, 1982; Monat & Lazarus, 1991;
Coyne & Holroyd, 1982). The transactional nature of coping is described
by Coyne and Holroyd (1982): "Ongoing commerce between person and
environment are viewed in terms of their reciprocal action, with each
affecting and in turn being affected by the other” (p. 109).
Lincoln and Guba (1985) discuss the role of values in research and
point out that for the naturalistic researcher, inquiry is not value free, as
positivist view s hold, but that inquiry is value bound. Authors studying
coping discuss at length the difficulty of separating out their values about
coping. Haan (1982) insists that the study of coping and much of social
psychology research is necessarily value-bound. The Lazarus group
(Monat & Lazarus, 1991; Folkman & Lazarus, 1985) discuss values and
coping and while refusing to label avoidance behaviors and other
defenses as maladaptive, nevertheless agree that values enter into the
study of coping.
A study of coping behavior can only have meaning within a context
which provides possible stressors. Coping and coping behavior, by
definition, cannot occur unless there exists the experience of a stressor
which provides threat or challenge and toward which effort must then be
exerted in order for balance to be maintained. The environmental stressor
which was to provide the possibility for threat or challenge to be coped
6
w ith in this study were the architectural, attitudinal, and systemic
barriers existing in the mainstream high school context. The above
rationale which discusses the fit between coping and the naturalist
paradigm, therefore also held true for that which was to be coped with—
integration issues within the mainstream high school setting.
H ow might a study of the personal experience of mainstreaming or
educational integration fit within a naturalistic paradigm?
Mainstreaming is defined as "the provision of opportunities for students
labeled as handicapped who are in special education settings to spend a
portion of their time in general education” (Lipsky & Gartner, 1989, p.
17). The terms mainstreaming and inclusion attempt to go beyond the
concept of integration, by specifying placement of a student with a
disability into a general education classroom, alongside his or her non
disabled peers, for the purpose of ensuring that the student is being
given opportunity to gain a free and appropriate education in the least
restrictive environment (Sailor, Anderson, Halvorsen, Doering, Filler, &
Goetz, 1989; Lipsky & Gartner, 1994). Quantitative studies of the
subjective experience of mainstreaming have been done which gather
data about teacher’s experiences and expectations (York, Vandercook,
MacDonald, Heise-Neff, & Caughey, 1992; Semmel, Abernathy, Butera,
and Lesar, 1991; Savage & Wienke, 1989) and about those of students
7
with disabilities (Fourqurean & LaCourt, 1990), and their non-disabled
peers (York et al., 1992; Weisel, 1988; Gillies & Shackley, 1988). It is
hypothesized that the nature of contact between groups of students in a
mainstreaming situation, and the subjective experience of such contact,
varies greatly, and “ can be the origin for the inconsistent results of
research which examined the effect of these contacts” (Weisel, 1988, p.
162). While quantitative studies should and will continue to be done, the
variation in the results of these studies suggested that qualitative study of
the subjective experience of students with disabilities in the mainstream
context could be valuable. It was hoped that such a study might provide
an in-depth view of the personal dynamics involved, uncovering
individual truths and critical issues for future studies (Stainback &
Stainback, 1984a), both quantitative and qualitative.
Discussion
The purpose of this study was to explore what coping strategies, if
any, were used by students with physical and developmental disabilities
as they went about their daily lives in the mainstream high school
context. The two concepts of major interest in this study are coping and
mainstreaming, or inclusion.
A coping strategy is a highly individual and very complex choice.
To understand coping behavior, one must ask why, in a given situation,
8
one student w ill choose to ask his or her teacher for help when posed
with perceived challenge or threat, while another will choose to research
a textbook, or to ask for help from his or her classmate after school. It
depends, in part, on the student’s internal motive, and in order for the
meaning of motive and choice to be clarified, one must collaborate with
the student to apprehend his or her point of view. While it is possible to
research the logic of such subjective matter with quantitative measures, it
would necessarily be with a very selective focus on a particular aspect of
coping skill. Such a selective focus must probably neglect the study of
subjective meanings of chosen coping strategies which were of particular
interest to this study. In order to understand subjective meaning, it was
necessary to interview with the individual subjects because they were the
source of assigned meaning within their life contexts. Qualitative study
is better suited to gain this subjective information than is quantitative
study.
The rationale for using qualitative methods in this study was also
reinforced by the social context in which coping was to be studied, the
mainstream high school. The social integration issues inherent in a study
of mainstreaming are, by nature, larger than the scope of any simple
cause-effect relationship. A student with a disability may be isolating
him or herself as a way of coping in the mainstream context; or his or
her non-disabled peer may be avoiding the student with disability,
9
because he or she is uncomfortable with physical “ difference.” More
probably, it is an interaction of both of these, as w ell as many other
possible factors. Such is the nature of the mutually shaping factors of all
entities, as discussed by Lincoln and Guba (1985).
In addition, the subject matter of this study was very obviously
value-laden. Mainstreaming, that is, educational integration has come
about as a result of legislation, in the form of P.L. 94-142 of 1975, now
known as the Individuals with Disabilities Education Act (IDEA), which
upholds the human rights of all individuals to receive equal and
appropriate education. Just treatment of all citizens in a free society was
the value under consideration. Such value-laden content, as w ell as the
interactive nature of the context, was more appropriately studied using
qualitative methods.
QUESTIONS THIS STUDY ADDRESSED
With the assumption that the point of "mainstreaming" students
with disabilities is to provide them with physical, social, and academic
access to as normal an educational experience as possible, the following
broad questions about coping in the mainstream context were posed:
1. H ow could coping behavior be discerned in adolescents with
disabilities in the mainstream high school context?
10
2. What, if any, were the physical, cognitive, psychosocial, and/or
emotional challenges or threats with which students with
disabilities must cope in the mainstream high school context (See
Appendix J for definition of terms)?
3. What strategies, if any, did the student with a disability report
using to cope with the challenges or threats experienced?
4. What coping behaviors, or the absence of them, could be
observed by the researcher in regard to these issues?
5. What coping behaviors, or the absence of them, were observed
by the general education and/or special education teacher in regard
to these issues?
LIMITATIONS OF THIS STUDY
The limitations of the present study included the following:
1 . The number of subjects was limited because of the time constraints
involved in gathering the amount of data needed in qualitative
description of subjects.
2. The literature reviewed that provided background for this study was
limited to that which was available through the libraries of the University
of Southern California in Los Angeles, California.
11
CONCLUSION
This study focused on how these adolescents coped with the threats
or challenges they experienced within a mainstream school context. It
was thought that developing humans learn their self-concepts partly
through interaction with the social environment, as feelings and
impressions about the self are reflected back to the individual from
family members and other relationships (Erikson, 1968; Bogdan & Biklen,
1982). If the larger social environment selects out difference, imbues that
difference with significance and chooses to devalue it (Higgins, 1992), the
developing individual will then learn also to devalue that which is
different about the self (Higgins, 1992; Erikson, 1968; Gliedman & Roth,
1980; McNeil, 1969; Brim, 1966; Goffman, 1963). It was reasoned that
adolescents with disabilities, placed in a mainstream school context,
might be coping with their ow n experience of being different (Carlson,
Ricci, & Shade-Zeldow, 1990), in a world which tends to value
conformity to an ideal physical image (Higgins, 1992; Wolfe, 1991;
Orbach, 1978; Iphofen, 1990; Wells, 1983). The challenges they faced and
the behaviors they chose to cope with those challenges were the focus of
inquiry for this study.
12
CHAPTER II
LITERATURE REVIEW
The purpose of this study was to gather information from three
adolescent students with physical and developmental disabilities about
what phenomena in the mainstream high school context they found
threatening or challenging, and how they coped with those threats or
challenges. This chapter begins with a discussion of sociocultural view s
of adolescence followed by an overview of adolescent development. A
review of the literature on mainstreaming is then presented, in order to
establish that threats or challenges to coping may exist in the mainstream
high school context. A definition of coping and theories of coping are
reviewed to provide understanding of concepts involved in this study.
The chapter concludes with a brief review of the theoretical relevance of
adolescent coping to the field of occupational therapy.
SOCIOCULTURAL VIEWS OF ADOLESCENCE
The state of rapid technological change in which modern society
exists (Toffler, 1970; Conger, 1974; Keniston, 1960) has had effects on
13
many social institutions, including the family. It is hypothesized that the
experience of adolescence and the parent-adolescent relationship is
effected by this rapid change. It is thought that as the speed of change
increases, the gap between the parent’s experience of adolescence and
that of his or her child widens correspondingly. As Conger (1974) states,
“the greater the rate of social change, the larger the generation gap may
be expected to be” (p. 409).
Historically, before society became industrial, adult work roles were
more often carried out at or near the home, and young people, in the
home, were expected to learn and gradually take on increasing amounts
of responsibility, facilitating a natural transition to the adult role
(Erikson, 1968). As our society has become industrialized, adult work
roles have increasingly been performed away from home. The child and
adolescent in today’ s world, often have little or no opportunity to view or
practice adult work role functions (Erikson, 1968; Kleijwegt, 1991). It is
thought that this lack of clarity regarding role function, contributes to the
formation of the “ sub-culture” of adolescence that w e see in modern times
(McNeil, 1969; Erikson, 1968; Clausen, 1968).
14
OVERVIEW OF ADOLESCENT DEVELOPMENT
Adolescence is a period in human development which spans the
years between dependent childhood and independent adulthood. Most
sources are in agreement that adolescence begins with the onset of
puberty (Kimmel & Weiner, 1995; Daub, 1988; Conger, 1973), which
occurs approximately between ages eight and 13 in females and between
ages 10 and 15 in males (Daub, 1988). Adolescence is generally thought to
be ended at the attainment of legal adulthood or at the completion of the
developmental tasks of adolescence. These developmental tasks include
completion of physical growth (Daub, 1988; Conger, 1973), the pursuit of
emotional independence from the family (Pennington & Sharrott, 1985;
Erikson, 1968; Bios, 1979; Havighurst, 1972), the definition and planning
of vocational goals (Conger, 1973; Kielhofner & Barris, 1985; Havighurst,
1972; Pennington & Sharrott, 1985; Erikson, 1968), the development of the
capacity to interact effectively with peers (Pennington & Sharrott, 1985;
Havighurst, 1972; Erikson, 1968), the attainment of an adequate sense of
sexual identity (Erikson, 1968; Ausubel, 1977; Daub, 1988), and the
development of a value system and self-esteem which support
responsible citizenship (Pennington & Sharrott, 1985; Havighurst, 1972).
In order to accomplish these numerous tasks, the adolescent must
undergo profound physical, psychological, and social change, the earliest
of which is puberty.
15
The physical changes associated with puberty, or the onset of
adolescence, include the rapid maturation of the primary and secondary
sex characteristics (Kimmel & Weiner, 1995; Conger, 1973), as w ell as
changes in the cardiovascular and musculo-skeletal systems (Daub, 1988;
Conger, 1973). This period of change can be dramatic, because of the
speed at which it occurs and because of the large percentage of the body
which is affected by it (Erikson, 1968; Kimmel & Weiner, 1995).
Cognitive or intellectual development during the adolescent period
may also be a source of profound change (Conger, 1973; Kimmel &
Weiner, 1995). Piaget’s (1952) theory of cognitive development places the
appearance of formal operational thought at approximately age 11, and
brings with it to adolescence an increased capacity for logic and ability to
deal with symbols (Piaget & Inhelder, 1958). This ability of the growing
child to deal with the symbolic is associated with his or her ability to
consider contrary-to-fact situations and to consider the possible as w ell as
the actual, bringing with it a capacity for a future orientation (Piaget &
Inhelder, 1958). The cognitive ability of the child to contemplate the
future is thought to be related to youthful idealism (Daub, 1988) and to
the ability to plan ahead for occupational and career goals (Kielhofner &
Barris, 1985). The attainment of formal operational thought is also
associated with increases in social awareness of both self and others
(Elkind, 1967). It is considered to be a necessary, but not sufficient
16
condition basic to adolescent moral development (Kohlberg, 1969) and
may therefore, play a role in the developing adolescent’s ability to take
the part of the “ other” (Daub, 1988; Kohlberg, 1969; Kimmell & Weiner,
1995). It should be noted that Piaget’s theory of cognitive developm ent
asserts that development occurs more as a result of the child’s active
experiencing of the environment, than as a result of chronological age
(Piaget and Inhelder, 1958).
The social development of the adolescent is a complex aspect of this
time in his or her life. The need for the adolescent to begin breaking
away from his or her parents and to establish independence is a difficult
issue, for both parent and child (Havighurst, 1972; Erikson, 1968; Conger,
1973; Bios, 1979). The struggle for a mutually satisfying balance of
dependence and independence between parent and adolescent may be
confusing and a source of conflict (Daub, 1988; Havighurst, 1972; Conger,
1973; Bios, 1979; Kimmel & Weiner, 1995; Kielhofner & Barris, 1985).
Parents may demonstrate ambivalence during this time in their wishes
for the adolescent to learn the lessons which w ill prepare him or her for
responsible adulthood, while yet fearful that these lessons may be painful
or dangerous (Havighurst, 1972; Kimmel & Weiner, 1995; Conger, 1973;
Bios, 1979). The adolescent may also experience feelings of ambivalence,
in relation to this issue, desiring the freedom of independent decision
17
making, yet in some trepidation at unfamiliar and complex adult
responsibilities and roles (Havighurst, 1972; Kimmel & Weiner, 1995;
Kielhofner & Barris, 1985).
As the struggle to become independent of parents occurs,
adolescents begin to look to their peer group to build interdependent
relationships (Smart & Smart, 1978; Havighurst, 1972; Pennington &
Sharrott, 1985; Kimmel & Weiner, 1995). Positive peer group experiences
appear to serve many functions in the socialization of adolescents
including improvement of social skills (Kimmel & Weiner, 1995;
Havighurst, 1972; Conger, 1979; Daub, 1988), and increase in feelings of
self esteem (Kimmel & Weiner, 1995; Conger, 1979; Pennington &
Sharrott, 1985). As social skills and self confidence increase, these may
lead to the capacity for intimate friendships with both same-sex and
opposite sex peers (Kimmel & Weiner, 1995; Havighurst, 1972; Conger,
1979; Daub, 1988; Pennington & Sharrott, 1985). Experiences of intimacy
w ith peers of the opposite sex may help to form the basis for an adequate
sense of sexual identity in the maturing adolescent (Erikson, 1968;
Havighurst, 1972).
Positive peer group experience may contribute to identity formation
in the developing adolescent in many ways (Conger, 1973; Erikson, 1968;
Kimmel & Weiner, 1995; Kielhofner & Barris, 1985). Peer interaction may
help clarify the adolescent’s developing sense of self, through trusted
18
sharing of personal information (Conger, 1973; Kimmel & Weiner, 1995),
through involvements in shared skills and interests (Conger, 1973), and
through continuous comparison and testing of "possibilities . . . and . . .
values” (Erikson, 1968, p. 87) as adolescents experiment with new
behaviors (Kielhofner & Barris, 1985).
Another often noted characteristic of the social world of, especially,
early adolescence is the tendency to a rigid conformity in dress, musical
taste, use of language and choice of friends within the peer group
(Erikson, 1968; Havighurst, 1972; Conger, 1973; Daub, 1988; Kimmel &
Weiner, 1995). This need for rigid conformity within the peer group is
associated with the growing adolescents need to establish identity
separate from the style of his or her parents (Erikson, 1968; Havighurst,
1972; Conger, 1973; Kimmel & Weiner, 1995). It is also associated w ith a
need for the adolescent to maintain a solid sameness within the peer
group while he or she learns to cope with the myriad physical and
psycho-social changes that are an inescapable part of his or her
development (Erikson, 1968; Wright, 1983; McNeil, 1969). It is noted that
this tendency toward conformity within the peer group may have a
negative aspect exemplified in rejection of “undesirable" peers, and in
peer pressure to join in delinquent activities or drug experimentation
(Conger, 1979; Erikson, 1968). It is noted that failure or delay in
19
accomplishing the social maturation that may be afforded by peer
interaction is associated with unhappiness in adolescence or with inability
to move beyond this basic task (Havighurst, 1972; Kimmel & Weiner,
1995).
Moral development may be another important aspect of identity
formation for adolescents (Havighurst, 1972; Daub, 1988; Erikson, 1968;
Kohlberg, 1969). The presence of a system of values unique to the
developing person which can guide him or her in making choices
independently of his or her parents is a mark of increasing maturity
(Havighurst, 1972; Erikson, 1968; Daub, 1988; Conger, 1973; Kimmel &
Weiner, 1995). The capacity for moral judgement in humans is thought
to parallel cognitive development, so that to the extent that the adolescent
is capable of formal operational thought, he or she is also capable of
reciprocity, or taking the part of the ‘other’ (Kohlberg, 1969; Cantwell &
Svajian, 1974). The capacity for moral judgement may or may not mature
in a given individual beyond the minimum capacity that is attained with
formal operations (Kohlberg, 1969; Daub, 1988; Havighurst, 1972).
Gilligan’s (1982) view considers that gender may play a part in
moral development. She notes that females experience a complex
maturation process, developing their identities concurrently with the
cultivation of interpersonal relationships with others. This process of
20
growth, including relationships to others, is thought to result in an ethic
of care that Gilligan (1982) has found to be more characteristic of females
than of males. This view is in contrast to, the perhaps, more male-
oriented models of Kohlberg (1969) and Erikson (1968), in which identity
formation precedes the ability to be intimate with others.
It is hypothesized that the developmental process may differ from
the norm for children and adolescents who are disabled (Gliedman &
Roth, 1980; Strax & Wolfson, 1984; Battle, 1974; Wright, 1983; Pennington
& Sharrott, 1985). There are many possible reasons cited for a lengthened
adolescent period for the person with a disability. Among them are
mobility problems within the school and community environment (Strax
& Wolfson, 1984; Park, 1975), over-protection of the person with
disability by his or her family (Strax & Wolfson, 1984; Hawke &
Auerbach, 1975), cumulative developmental delays that remain
unresolved from earlier childhood stages (Battle, 1974; Strax & Wolfson,
1984; Pennington & Sharrott, 1985), delay in attainment of intimacy with
peers of the opposite sex (Wright, 1983; Pennington & Sharrott, 1985),
and extended economic dependence on the family due to delayed
capacity or opportunity to assume the worker role (Park, 1975; Wright,
1983). The isolation and peer rejection that are thought to be related to
the stigma of physical disability (Wright, 1983; Gliedman & Roth, 1985;
21
Goffman, 1963; English, 1971), may also affect the developmental process
(Gliedman & Roth, 1980).
The developmental challenges with which adolescents must cope
are numerous. It is probable that adolescents with disabilities may find
coping within the mainstream high school context to be challenging or
threatening in some ways. The following section reviews the literature
on mainstreaming and points out some possible areas of challenge for
this population.
MAINSTREAMING AND INCLUSION
In a naturalistic study such as this, it is necessary to gain an
understanding of the context in which a phenomenon occurs. In order to
grasp the meaning of individual actions, one must have an understanding
of the physical, intellectual, and socio-cultural environment in which
actions take place (Lincoln & Guba, 1985). To address this concern, a
review of the literature pertaining to the current climate and state of
mainstreaming in the schools is presented.
The concept of mainstreaming can be equated with educational
integration and will be defined for the purposes of this study as follows:
“ the provision of opportunities for students labeled as handicapped who
are in special education settings to spend a portion of their time in
22
general education” (Lipsky & Gartner, 1989, p. 17). Lipsky and Gartner
(1994) go beyond the term mainstreaming to define the more specific
term— inclusion. Inclusion is defined as “ the provision of services to
students with disabilities, in their neighborhood schools, in age
appropriate regular education classes, with the necessary support services
and supplementary aids~for both children and teachers” (Lipsky &
Gartner, 1994, p. 36). According to Lipsky and Gartner (1994), the
philosophy of inclusion goes beyond the term mainstreaming, in that it
no longer assumes “ the existence of two separate systems— regular
education and special education" (p. 36), as mainstreaming does.
The Education for All Handicapped Children Act (P.L. 94-142) of
1975, now known as the Individuals with Disabilities Education Act
(IDEA), states that all children have the right to “a free appropriate public
education” (§ 612) within the least restrictive environment. This means
that many children who were formerly placed in self-contained special
education classrooms are now to be placed in a regular classroom setting
with special education support used as little as is absolutely necessary.
The law implies that students with disabilities have rights to access as
normal an educational environment as possible, including contact with
their non-disabled peers.
23
While the implementation of P.L. 94-142 has been view ed as ‘ ‘ one of
the finest achievements in American public education” (Lipsky & Gartner,
1989, p. 8), progress in the enactment of mainstreaming is improving
slowly. The current state of application of P.L. 94-142 has been reviewed
by the U.S. Department of Education (1994) and denotes that 35.7% of
students with disabilities are assigned to regular classes for at least 80%
of the school day. This figure represents an 8.4% nationwide increase in
the number of students with disabilities served in regular education
settings during the 1991-92 school year. This is an improvement since the
1988 report which denoted 26.5% of students placed into mainstream
classrooms (U.S. Department of Education, 1988).
A “ continuum of placement” (California Department of Education,
1994, p. 101) model continues to be utilized by school districts as a range
from which to choose placement alternatives which will, optimally,
represent the individual student’s least restrictive environment. The
continuum model, generally, implies that students will be placed
primarily in the environment which is most appropriate to their needs,
whether in the regular classroom, the resource program, or the separate,
special education classroom, or an appropriate combination of these. An
individual student’ s placement within the continuum is determined
through the Individualized Education Program (IEP), which is a legal
24
document whose contents are negotiated between the student, the
parents, the special education teacher, and other concerned school related
officials, such as counselors or therapists. A breakdown of placements
describing the continuum of different educational environments is
provided by the California State Department of Education (1994) and
includes the following: general education programs, resource specialist
programs, designated instruction and services, special classes and centers,
nonpublic, nonsectarian school services, and state special schools. In
more detail, these are described as follows: 1) General education
programs. This placement is described as primarily within the general
education classroom with special services provided as needed "to support
the general education program” (p. 102). 2) Resource specialist
programs. The resource specialist is described as providing instructional
materials designed to support the core curriculum in general education.
This includes provision of "assistance, consultation, resource information
and material, and coordination of special education services for
individuals with exceptional needs” (p. 102). 3) Designated instruction
and services. This aspect of the continuum of services includes such
items as speech and language development and remediation, health and
nursing services, psychological services “ other than assessment” (p. 102),
and physical and occupational therapy. 4) Special classes and centers.
25
This placement category is described as the instructional setting provided
for students “ when the nature or severity of the disability prevents their
participation in the regular school program. 5) Nonpublic, nonsectarian
schools or agencies or both. This aspect of the continuum of placement
provides private school options to students whose needs cannot be met
within the public education system. 6) State special schools. This
placement option is described as serving “ students for whom no
appropriate placement is available in the local plan area” (p. 103).
Students whose primary disability is deafness or blindness are the
examples given as students w ho might fall into this category (California
State Department of Education, 1994).
Danielson and Bellamy (1989) note a wide variation between states
in the numbers of students placed in different settings. The state of
Maryland, for example, placed 40% of students labeled as retarded in
segregated settings, while 13 states placed less than 3% of these students
in segregated settings (Danielson & Bellamy, 1989). Biklen (1992) and
others (Danielson & Bellamy, 1989; McWilliams, 1991; Fad & Ryser, 1993)
note that a large percentage (40% or more) of all students designated as
disabled are placed in the learning disabled (LD) or speech impaired
categories and that this fact deceptively inflates the number of regular
education placements cited.
26
Lipsky and Gartner (1989) cite teacher training programs in both
general and special education, and “ the absence of alternative models and
paradigms of integration” (p. 10) as probable reasons for resistance to
change. Biklen (1992) and others (Walker, 1987; Danielson & Bellamy,
1989) contend that factors other than student characteristics “ have been
identified as influencing placement practices and, therefore, clinical
judgement” (p. 102). Funding policies which allocate resources according
to the nature of services or labeling, are cited (Biklen, 1992).
The concept of a continuum of placement has been supported by
many (Will, 1986; Kauffman, Gerber & Semmel, 1988; Madden & Slavin,
1983). However, the continuum concept is viewed by some as a way of
maintaining separate programs and thus, not supportive of the goal of
integration (Biklen, 1992; Stainback & Stainback, 1984b, 1989).
Alternative solutions are being sought in the form of a movement toward
regular education for all students in their neighborhood schools,
regardless of the student’ s disability. One aspect of this movement has
been called the Regular Education Initiative (REI) in which all students
would be served by “increasing the capabilities of the regular school
environment, the mainstream, to meet the unique needs of all students"
(Stainback & Stainback, 1989, p. 42).
27
Inclusion, whether described as full inclusion, or as inclusive
education, is a term that has grown out of this movement toward regular
education for all students. Full inclusion, according to Rogers (1993),
implies that all students will be placed in the age-appropriate,
neighborhood school classrooms they would attend if they did not have
a disability. Inclusive education, on the other hand, emphasizes
placement into the general education classroom, but provides for
curricular modifications and specialized techniques to support students as
needed, with collaboration between general and special education
services (Roach, 1993).
Least Restrictive Environment
The debate surrounding where and how students with disabilities
ought to be educated seems to be a struggle to determine what
constitutes the least restrictive environment (LRE), as mandated by the
Individuals with Disabilities Education Act (IDEA). The LRE mandate,
generally, implies that students should be placed in the educational
environment which allows them access to a free and appropriate
education, including contact with their non-disabled peers. Within this
scheme, special education supports should be used as little as is
absolutely necessary.
Providers and consumers of public education are debating how the
LRE mandate can be operationalized (Yell, 1995). Yell (1995) has
28
provided a legal analysis which reviews the original wording of the LRE
mandate and some of the conflicts resulting in court cases whose
settlements help “ clarify and define the concept of LRE” (p. 390). Yell
(1995) summarizes a number of recent cases including "Sacramento City
Unified School District v. Holland (1994)” , and presents "principles
extrapolated from these court decisions” (p. 400). These six principles are
as follows: 1) Determination of the LRE must be based on the individual
needs of the child. 2) Good faith efforts must be made to keep students
in integrated settings. The courts stress that these efforts cannot be
gestures, but “ must be authentic attempts at inclusion” (Yell, 1995, p. 400).
3) A complete continuum of alternative placements must be available to
the extent needed by special education students in the school district.
The courts emphasized that "only when the complete continuum of
educational settings is available is it possible to ensure that the
appropriate placement will be chosen” (Yell, 1995, p. 401). 4) In making
LRE decisions, the needs of the students peers should be considered. If
the presence of a student with a disability is disruptive to the regular
class environment, or if the teacher is required to neglect other students
to meet the needs of the student with a disability, then the courts found
the placement to be inappropriate. 5) When students are placed in more
restrictive settings, they must be integrated to the maximum extent
29
appropriate. This integration may include lunch, recess, physical
education an d /or non-academic subjects. 6) Schools w ill bear the
burden of proof in defending placement decisions.
The following section reviews research pertinent to significant
issues surrounding mainstreaming and inclusion questions. The studies
presented here depict a broad view of issues which may suggest sources
of challenge for adolescents with disabilities in a high school context.
A study done by Sawyer, McLaughlin and Winglee (1994) analyzes
educational placement trends over time for students with disabilities,
utilizing data collected annually from the Office of Special Education
Programs (OSEP). Trends demonstrating placements into general public
schools from 1977-1990 are presented. In addition, trends indicating
placement into general education classrooms from 1985-1990 are viewed.
Authors discuss reliability questions regarding the OSEP placement data.
They make use of the continuum model of placement used by OSEP,
described earlier in this chapter (see p. 25), documenting changes in
number of placements according to disability category. Results regarding
general education classroom placements between 1985 and 1990
demonstrated increases in almost all disability categories, with a 6%
increase of all disabilities combined. Sawyer et al. (1994) note that
resource room placements decreased during the same time period and
that separate classroom placements remained unchanged. The authors
30
also note that low numbers of students in the hearing or visual
impairment category cause percentages to fluctuate more readily in these
than in other categories. The authors state that "percentage increases in
general education class placements (since 1985) could be due, in part, to
the recent identification of large numbers of students with specific
learning disabilities” (Sawyer et al., 1994, p. 213). However, the results
also demonstrate encouraging increases in general education placements
for students with hearing impairments (8%), students with speech and
language impairments (6%), students with severe emotional disturbance
(7%), and students with multiple handicaps (6%). Sawyer et al. (1994)
caution that integration trends vary from place to place, stating,
“ substantial variation still exists” (p. 213). The authors conclude that the
least restrictive environment (LRE) mandate of the Individuals with
Disabilities Education Act (IDEA) continues to be sought for and give
some credit to "attitudinal changes and advocacy for integration on the
part of parents and the public schools” (Sawyer et al., 1994, p. 213) such
as is exemplified by the Regular Education Initiative.
A qualitative study of the implementation of the least restrictive
environment (LRE) provision of the Individuals with Disabilities
Education Act (IDEA) was done by Hasazi, Johnston, Liggett and
Schattman (1994) in six states involving 12 school districts. Data were
31
gathered over a two year period via semi-structured interviews with 16
to 24 people at each of 18 sites. Of the 18 sites studied, eight were
identified as high users of "residential facilities, separate schools, and
separate classes” (p. 492), and 10 sites were identified as low users of
separate placement options. These low user sites were considered more
likely to place students with disabilities in general education classrooms.
The interviewees at the sites were described as “leadership personnel”
(Hasazi et al., 1994, p. 492) including school administrators and teachers
at state and local levels, and parents and members of advocacy
organizations, “ all of whom were known for their statewide knowledge
of LRE policy implementation” (p. 492). Based on the interview data, six
major factors were identified as influential in implementation of LRE
policy: 1) finance, 2) organization, 3) advocacy, 4)implementors,
5)knowledge and values, and 6) state and local context.
Generally, results of the study found that high users of separate
facilities tended to view financial and organizational considerations as
requiring “literal compliance or close adherence to the strict categorical
nature of the systems” (Hasazi et al., 1994 , p. 504). In other words, high
users of separate facilities tended to continue to rely on separate funding
and schooling systems that had worked well for them in the past. The
influence of parent advocacy at high user sites “ acknowledged the
32
importance of both maintaining and expanding options within the special
education system’ ’ (p. 505). It was found that in the high user sites, the
most vocal parents were “ those who favored more segregated options,
and wanted to maintain the existing system” (Hasazi et al., 1994, p. 505).
Implementors of LRE policy included State Department of
Education administrators and staff, central, general, special and regional
education administrators, principals, and special and general educators.
State level implementors at high user sites used their positions “ to further
more integrated approaches to LRE policy” (Hasazi et al., 1994, p. 501),
while regional and local implementors tended to support existing service
models of separate funding and education.
Knowledge and values at high user sites were also “ directed at
maintaining the existing model [leading] to incremental changes in the
delivery of special education” (Hasazi et al., 1994, p. 503).
State and local influences on implementation of LRE policy at all
sites were related to concerns of the local traditions of rural versus urban
settings, and with the size, complexity, and political power of existing
bureaucracies. These influences varied with site location.
Low user sites tended to view finance and organization as
“necessary realities that could be ‘flexed’ to push the system to do what
they wanted” (Hasazi et al., 1994, p. 504). Parent advocacy at these sites
33
tended to favor ‘ ‘ integrated options” (p. 505) and were helpful in
“ disseminating knowledge about integration to and supporting change
efforts at the local district level” (Hasazi et al., 1994, p. 505).
Implementors of policy at the state level at low user sites were
found to be using "resources to support local model demonstration
projects, [proposing] changes to eliminate financial disincentives” (Hasazi
et al., 1994, p. 505). In addition, these implementors were supportive of
parent training organizations and professional development.
Knowledge and values were found to be a formidable influence in
the promotion of integrated approaches at low user sites. Hasazi et al.
(1994) conclude stating their belief that persons and organizations who
work in carrying out policy “ must be intensively sensitive to the reality of
the organizations involved and the politics that surround and permeate
them” (p. 506). Yet they also found “ a clear relationship between LRE
intent and what happened in the real world” (Hasazi et al., 1994, p. 506)
and that implementation of policy sometimes depended on favorable
circumstances. The results of this study imply that implementation of
LRE policy may depend on different forces at work within different
regions and local districts.
Lombardi, Nuzzo, Kennedy, and Foshay (1994) studied "integrated
education" (p. 315) as an area of inclusion, for one academic year at a
34
high school in West Virginia. Special and regular educators,
administrators, and parents of the 44 participating students were exposed
to training sessions which emphasized “ cooperative teaching, team
decision making, and the sharing of responsibilities” (p. 316) to encourage
an environment “ supportive of [an] inclusion philosophy” (Lombardi et
al., 1994, p. 316). The 44 students with mild disabilities who participated
were described in the following categories: 1) mild mentally impaired, 2)
moderately mentally impaired, 3) specific learning disabled, 4) behavior
disordered, 5) communication disordered, and 6) autistic. Students were
placed in full or partial integration programs “ in as many core classes as
seemed feasible and in all their electives” (Lombardi et al., 1994, p. 316).
Data regarding the perceived efficacy of integrated education were
gathered via questionnaires administered to special and regular
educators, students, and parents of students with and without disabilities.
The resulting data were generally “ supportive of a collaborative effort
among teachers, parents, and students in support of the value of
integrated education” (Lombardi et al., 1994, p. 320). However, regular
educators were found to be significantly less sure that students with
severe disabilities would benefit from an integrated classroom setting.
Lombardi et al. (1994) caution that one year is a short time in which to
record the effects of change within school programs.
35
A pilot study done by Gillies and Shackley (1988) looks at attitudes
of able-bodied students toward their schoolmates with disabilities. The
students were separated into two groups, those who attended integrated
classes with students with disabilities and those who attended a school
where no integration took place. The data were gathered using self
completed questionnaires and structured interviews. The results of the
study showed that able-bodied students who attended classes in which
students with disabilities were mainstreamed were significantly less
likely (p<0.05) to “ hold a negative opinion about having handicapped
pupils in their class at school” than were those who attended a non
integrated school. Gillies and Schackley (1988) caution that
generalization of results must be limited because of small sample size
(208) and geographic limitations.
W eisel (1988) has done a study on attitudes toward disability which
attempts to take "multi-dimensional” (p. 161) measures. Using the
Disability Factor Scale— General (DFS-G), Weisel (1988) studied the
attitudes of 156 seventh and eighth grade normally hearing children in
three groups. The three groups consisted of 1) those who had high
contact with students with hearing impairments, mainstreamed in their
classroom for part of the day, 2) those who had some contact with
students with hearing impairments who attended self-contained special
36
education classrooms at the same school, and 3) those who had very little
or no contact, having no students with hearing impairments attending
their school. The DFS-G attempts to measure attitudes toward disability
both through direct measures of social and personal response, and
“ through subtle and indirect measures of . . . discomfort . . . and defenses
against the condition of disability" (Weisel, 1988, p. 162). The results of
the study showed a “ not necessarily linear” (p. 165) relationship between
amount of contact with persons who are hearing impaired and attitudes
toward disability. While the high contact group tested to have generally
better attitudes than the moderate and low contact groups, the differences
were not significant, supporting the claim that “ a closer proximity by
itself is not necessarily associated with more positive attitudes” (Weisel,
1988, p. 165). Weisel and others (Lord, Varzos, Behrman, Wicks, &
Wicks, 1990) note that contact without careful structure may have
negative effects on attitudes toward disability. She discusses the
possibility that keeping students with disabilities separated in special
education classrooms on a general education campus, the experience of
the moderate contact group, may be perceived by regular education
students as a reflection of "segregative attitudes” (p. 166) on the part of
educational authorities, and thus, lend reinforcement to segregation as the
acceptable status quo. Weisel (1988) compares this concept to what
37
Miller, Brewer, and Edwards (1985) call “ category-based contact” (p. 65)
in which persons are deindividualized and viewed as “ out-group”
members.
A study done by Lord, Varzos, Behrman, Wicks, and Wicks (1990)
looks at the academic skills, social skills and subjective social experience
of 31 adolescent students with spina bifida in three conditions: 1) self-
contained classroom placement, 2) mainstream classroom placement, and
3) a combination of self-contained and mainstream classroom placement.
The students completed the UCLA Loneliness Scale (UCLALS) as a
measure of the subjective experience of loneliness, and the Peabody
Picture Vocabulary Test (PPVT) as a measure of verbal intelligence. The
student’s caregivers completed the Personality Inventory for Children
(PIC). Results demonstrated that the students with spina bifida in all
three groups, generally "had impaired academic and social skills” (p. 24)
and their scores on the UCLALS “ were significantly higher than those of
an able-bodied high school population” (p. 24). However, the three
groups demonstrated significant differences in academic and social skills
among themselves, with the mainstream group highest in verbal and
social skills, and the combined placement group reporting significantly
less loneliness (p< 0.05) on the UCLALS than the other two groups. Lord
et al. (1990) note the probability that classroom placement and skill levels
38
are interactive, "with children who demonstrate good skills at younger
ages being placed in more challenging environments, thus facilitating
further learning” (p. 26). The authors conclude that placement decisions
should be carefully made and that placements combining mainstream
and special classes may be less stressful for students than exclusive
mainstream placements.
A qualitative study done by Fourqurean and LaCourt (1990) elicited
the opinions and comments of 215 former special education students and
their parents. Information regarding their experience of the efficacy of
special education and transition services in the school district, as they
struggled with post-secondary adjustment, was gathered through open-
ended interview done by telephone. The majority of these subjects had
attended a combination of special education and mainstream classes.
Results indicated that, for the former students who had been employed
since leaving high school (n=174), difficulties with social skills and
effective communication were the most commonly reported problems in
their adjustment to the work environment. The next most cited problem
was difficulty maintaining effective work habits. For the students who
had gone on to college (19%), academic difficulties were the most
pressing, followed by social and emotional concerns, such as difficulty
relating effectively to peers and instructors, and difficulty coping with
39
“the numerous demands of college life” (Fourqurean & LaCourt, 1990, p.
19). Responses were elicited regarding what the students and their
parents felt had been the most helpful about their high school experience
and what might have made the high school experience more useful, or
better for them. Students and their parents reported needs for more
vocational classes, more emphasis on job-finding skills, more
encouragement and guidance from teachers and counselors, more
emphasis on self-concept development, and more academic development,
especially reading. "A surprising number of respondents (n=21)” also
reported their concern that “ the negative stigma caused by special
education” (p. 21) might have hurt self esteem and led to lower
expectations. Fourqurean and LaCourt (1990) conclude that non-
academic issues such as social and affective concerns were very important
to these respondents in their post-secondary adjustment. Vocational skills,
job-finding skills and self-advocacy skills were also of much importance.
The findings of this study were shared with the school district in which it
took place in hopes that “ the data generated from this project w ould lead
to improved services for students with handicaps within the district” (p.
16).
Madden and Slavin (1983) reviewed research done on the efficacy
of mainstream programs. With a goal of least restrictive environment as
40
mandated by P.L. 94-142, they view the continuum of possible
placements for students with disabilities and draw tentative conclusions
as to which combinations of placements might work best for students
w ith mild academic handicaps. Madden and Slavin (1983) note that the
Team Assisted Individualization (TAI) approach used by Slavin (1984)
correlated with marked gains in social acceptance of students with
disabilities by their non-disabled peers. Madden and Slavin (1983) note
that the use of a combination of cooperative learning methods and
individualized instruction appears to bring about the best results in terms
of positive social contact between groups of students, as well as for
academic outcomes for students both with and without disabilities.
Madden and Slavin (1983) state that "there is no support in the research
for a retreat from mainstreaming . . . except perhaps for very low IQ
students” (p. 560) and they note that even these may still be
mainstreamed into non-academic classes.
A study done by Johnson and Johnson (1982) compared the efficacy
of two methods of instruction on social interaction in a mathematics class
in which students with disabilities were mainstreamed. A cooperative
learning format was compared to an individualistic learning format to
determine if either format was more conducive to social interaction
between students with and without disabilities. The study also looked at
41
academic achievement for both groups of students and at the social and
cognitive development of students without disabilities. The disability
types involved in the study were classified as severe learning and
behavioral problems and educable mental retardation. Thirty-one
students, randomly separated into two groups, participated in the study
which lasted for 16 days of instruction over a four week period. The
cooperative learning method, to which half of the students were exposed,
involved formation of small groups of three to four, with three members
non-disabled and one member disabled. Groups were balanced for sex
and math ability. The individualistic learning method involved
traditional lectures to impart material and individual completion of
assignments. Students in both groups were individually tested on the
material covered each week. Results indicated that social contact
between students with and without disabilities occurred four times as
often in the cooperative learning condition as in the individualistic
condition. Results also indicated that “ both handicapped and non
handicapped students in the cooperative condition tended to achieve at a
somewhat higher level” (p. 266) (p< .10) than did the students in the
individualistic condition. Also of interest was the result that the non
handicapped students grouped in the cooperative condition were more
accurate (90% accuracy) in taking the perspective of the students with
42
disabilities, than those in the individualistic condition (66% accuracy),
when asked to respond to how difficult they thought the material was for
their disabled peers.
A study done by Johnson, Johnson, and Maruyama (1983) reiterates
the view of Johnson and Johnson (1982) that instructional methods which
utilize a cooperative learning format as opposed to competitive or
individualistic learning formats, are more likely to promote acceptance
between heterogeneous groups, rather than rejection. The authors
present a theoretical model of the social judgement process and a meta
analysis of 98 studies on the effects of interaction and physical proximity
on heterogeneous groups conducted between 1944 and 1982. Results of
the meta-analysis offer some validity to the theoretical model and the
authors conclude that “ there are ways of structuring interaction between
majority and minority students so that constructive and supportive peer
relationships result, or so that destructive and rejecting peer relationships
result” (Johnson et al., 1983, p. 37).
Feedback was obtained from special and general educators (n=18)
and from non-disabled peers (n=181) of students with severe disabilities,
w ho were involved in a year long program of mainstreaming, through a
study done by York, Vandercook, MacDonald, Heise-Neff, and Caughey
(1992). Information about the strengths, weaknesses, successes, and
43
difficulties of the program perceived by teachers and non-disabled
students was gathered through open-ended interviews. The interviews
were individualized in order to gain information about specific
experiences with the individual students involved. York et al. (1992) give
an example of a possible interview question: “ Do you think it is a good
idea for John to be integrated in regular classes like your reading class?”
(p. 246). Feedback from special educators, general educators, and non
disabled peers were generally positive. York et al. (1992) found it
remarkable “ that all educators and the overwhelming majority of
classmates [89.5%] recommended that integration into general education
classes continue” (p. 255). York et al. (1992) note that results of this study
must be applied cautiously because of study limitations including: 1)
subject selection was geographically limited to a suburban community in
the Midwest, 2) teachers were selected according to their tendency to be
positive and receptive to integration, and 3) some subjective
interpretation is necessary in the use of open ended questionnaires.
On the other hand, a study done by Semmel, Abernathy, Butera,
and Lesar (1991) which gathered data from teachers regarding their
attitudes, beliefs, and perceptions about mainstreaming issues,
demonstrated that both special and general education teachers did not
believe that regular classroom curriculum instruction could be readily
44
adapted to meet the needs of students with mild learning disabilities.
Specifically, while 58.42 % of the respondents “believed that regular class
teachers could adapt instruction to a wide range of student needs” (p. 18),
only 17.89% of these same respondents agreed that instruction could be
adapted if such students were placed in general education full time.
These educators also did not believe that mainstreaming would have
positive social benefits for students with disabilities. In addition, Semmel
et al. (1991) state: "we do not know the experience these educators have
had with the consultant m odel” (p. 20) but only 1 /3 of them were in
favor of using a special education consultant in the regular classroom to
teach students with mild disabilities.
A study done by Savage and Wienke (1989) view attitudes of
teachers toward mainstreaming. Teachers of elementary through high
school classes were surveyed and 62 secondary teachers responded. The
instrument used was the Teacher Opinion Survey which gathered data
regarding teacher opinions about mainstreaming and background
information. Background information included the number of years of
teaching experience, the number of workshops or classes pertinent to
special education issues participated in, and how recently, grade level
taught, and frequency of contact with a special education consultant or
resource room teacher. Results of the study showed a non-significant
45
(p>.05) negative relationship between attitudes toward special education
students and grade level taught. This finding would seem to infer that
secondary level teachers were more likely to have poor attitudes toward
special education students than their elementary or junior high
counterparts. Savage and Wienke (1989) note that perhaps, as the age
and grade of the student progresses, he or she is more likely to "have
deeply ingrained failure syndromes” (p. 72) and that this may account for
less optimism on the part of secondary teachers. Another finding of
interest was “ a small, but significant positive correlation (p< .001)
between Attitude and Frequency of Contact with the resource teacher” (p.
71). However, secondary teachers were found to be unlikely to engage in
such contact. Savage and Wienke suggest that contact between regular
education and consulting special education teachers be encouraged by
school administrators.
This review of the mainstreaming literature gives a general view of
the kinds of questions researchers are studying in their efforts to better
understand pertinent mainstreaming issues. For this study, it points out
a number of issues which may be sources of threat or challenge to
adolescents with disabilities. For example, to what degree is the student
allowed input as to what he or she thinks is an appropriate range along
the continuum of placement, whether in separate, special education
46
classroom, resource program or general education classroom? H ow does
the student cope with these decisions regarding his or her placement?
H ow does the student cope with the administrative practice of labeling
and placement of students according to severity or type of disability?
H ow does the student cope with the acceptance, rejection, or pity of his
or her non-disabled peers? These and other questions are posed in the
following section which summarizes some possible sources of threat or
challenge to adolescents with disabilities in the mainstream school
setting.
POSSIBLE SOURCES OF THREAT OR CHALLENGE
IN THE MAINSTREAM CONTEXT
It was not possible to state in advance what stimuli in the
mainstream setting would be experienced by the student with a disability
as a threat or challenge. However, literature review provided clues as to
what sources of threat or challenge may exist. The following discussion
utilizes the term barriers to describe any object, attitude, or policy which
tends to block the ability of an individual to gain and use full access to a
chosen environment. Yet, it is important to note that w hile barriers to
access may be a source of threat or challenge, so also may access itself be
experienced by any individual as threatening or challenging (Fromm,
1969; Peck, 1978), especially access to a new and unknown environment.
47
The intent of placing students into the mainstream is to allow
opportunity for integration of minority students into the broader
population to occur. While the barriers to full integration are considered
numerous (Halvorsen & Sailor, 1990), this discussion of barriers w ill be
limited to those with which adolescents with disabilities have direct
contact in the mainstream high school setting. The challenges or threats
which may require coping strategies for adolescents with disabilities may
be view ed in three categories: architectural barriers, attitudinal barriers,
and administrative or systemic barriers.
While much progress has been made in removing architectural
barriers (Stilwell, Stilwell, & Perritt, 1983), many remain (Halvorsen &
Sailor, 1990; Chandler, 1995). In the words of Daily Breeze N ew s staff
writer Rich Redding (1991), indeed, "persistence exists among the Los
Angeles Unified School District’ s 3,750 physically handicapped students
w ho must contend with daily hardships foreign to their peers. For
example, battles await with stairways, steps, doors, drinking fountains,
counters, buses. Even desks” (p. 81).
While the removal of architectural barriers may take time and
revision of funding, attitudinal barriers are perhaps, not so easily
removed. The fact that attitudinal barriers are perceived to exist may be
inferred from the large number of studies which attempt to quantify the
48
amount and quality of social contact between persons with and without
disabilities. This review deals only with some of those studies which
involve mainstreaming in schools (Weisel, 1988; Gillies & Schackley, 1988;
Savage & Wienke, 1989; Semmel et al., 1991; Bender, 1987; Eichinger,
1990; Johnson et al., 1983; Tin & Teasdale, 1985; Bohan & Humes, 1986;
Archie & Sherrill, 1989; Mercer & Denti, 1989). The observations and
reported feelings of loneliness and isolation mentioned by many
researchers (Blum, 1983; Carlson, Ricci, & Shade-Zeldow, 1990; Lord et
al., 1990; Davis, Anderson, Linkowski, Berger, & Feinstein, 1985; Tin &
Teasdale, 1985; Sailor et al., 1989) can be considered a result of attitudinal
barriers. It is likely, according to these observations, that students with
disabilities are struggling to cope with derision and rejection from non
disabled peers in the mainstream school (Johnson et al., 1983; Tin &
Teasdale, 1985; Johnson & Johnson, 1982; Madden & Slavin, 1983;
Bruininks, 1978; Biklen, 1992; Asch, 1989). The experience of being
separated out as “different” and therefore, not equal, and “the stigma of
special education” (Fourqurean & LaCourt, 1990) reported by researchers
of mainstreaming may be related to the stigma that is assigned to
physical disability by society in general (Goffman, 1963; Gliedman &
Roth, 1980; Hathaway, 1943; Killilea, 1952; Bowe, 1986; Franchild, 1985;
Wagner, 1985). It is probable that high school students with disabilities,
49
placed in the mainstream setting, are struggling to cope with results of
the stigma that is assigned to disability, in addition to the numerous
developmental tasks of adolescence (Pennington & Sharrott, 1985).
While research regarding the relationship between teacher attitudes
and integration has been inconclusive, teacher attitudes are generally
considered to be of much importance in the implementation of
mainstreaming programs (Lipsky & Gartner, 1989; Biklen, 1992; Bender,
1987; Kauffman et al., 1988; Savage & Wienke, 1989; Rist, 1978;
Fourqurean & LaCourt, 1990; Kluwin & Moores, 1989; Johnson & Bauer,
1992). Issues influencing teacher attitudes in the mainstream classroom
may include personal biases regarding deviation from the norm
(Gliedman & Roth, 1985; Lipsky & Gartner, 1989; Asch, 1989; Rist, 1978),
and political implications of mainstreaming, such as turf issues (Lilly,
1989; Allington & McGill-Franzen, 1989), pressure to improve academic
scores (Semmel et al., 1991), and program funding (Biklen, 1992; Walker,
1987; Danielson & Bellamy, 1989).
Administrative barriers, or what Stilwell, Stilwell, and Perritt (1983)
refer to as “policy barriers” (p. 342), may have broad effects. In a study
of barriers at the level of post-secondary education, they define policy
barriers as those which “ include the w ide range of administrative
decisions that influence resources delivered to students with handicaps”
50
(p. 342). Such administrative decisions necessarily effect architectural,
academic and social accessibility. Stilwell, et al. (1983) include admission
policies, availability of interpreters and readers, installment of Braille
markings on office and classroom doors, and availability of emergency
personnel, as some of the areas effected by such administrative decisions.
The practice of categorizing or labeling students with disabilities is
considered by some researchers (Biklen, 1992; Fourqurean & LaCourt,
1990) to be a systemic or administrative barrier to integration, and
represents a threat or challenge with which adolescents with disabilities
must cope in the mainstream setting. The practice of labeling students
according to disability for the purposes of placement and funding that is
currently being used by the administrations of many school districts
(Organisation for Economic Cooperation and Development, 1994) is
thought to contribute to discrimination against students with disabilities
(Johnson et al., 1983; Biklen, 1992; Eisenberg, Griggins, & Duval, 1982;
Hobbs, 1980; Weisel, 1988) and is considered to be destructive to the self
esteem of these students (Biklen, 1992; Eisenberg et al., 1982; Bogdan &
Taylor, 1982). Bogdan and Taylor (1982), in a study on the social
meaning of mental retardation, state their belief that the social
consequences of labeling are “ social rejection, stereotyping,
institutionalization, [and] the self-fulfilling prophecy" (p. 208).
51
DISCUSSION
In this review of the literature on mainstreaming, a number of
political, academic, and social concerns were raised. Many of these
issues can be viewed in terms of attitudinal, architectural, and
administrative barriers for students with disabilities in the mainstream
high school context. A discussion of the pertinent issues raised by this
literature review is presented here.
There is encouraging evidence that placement of students with
disabilities into general education classrooms is continuing to increase
(U.S. Department of Education, 1994; Sawyer et al., 1994). Yet, as noted
by Sawyer et al., (1994) and others (Danielson & Bellamy, 1989; Hasazi et
al., 1994) "substantial variation still exists” (p. 213); there continue to
exist at regional and local district levels, schools which tend to rely on
the separate funding and schooling systems that have worked w ell for
them in the past (Hasazi et al., 1994). In addition, many authors (Sawyer
et al., 1994; Danielson & Bellamy, 1989; Biklen, 1992; Fad & Ryser, 1993)
contend that large numbers of students in the learning disability category
deceptively inflate the number of regular education placements cited for
students with disabilities. The studies done by Hasazi et al. (1994) and
Yell (1995) on implementation and interpretation of LRE are very
enlightening in terms of how the socio-political systems work. Yet, many
questions remain concerning how best to carry out the process of
52
educational integration so that young people with and without
disabilities may benefit from it.
It is postulated by many authors (Lipsky & Gartner, 1989; Biklen,
Ford, & Ferguson, 1989) concerned with integration issues in the
mainstream school setting that philosophies of education are necessarily
in the process of change, both because of questions about academic
excellence and about such issues as the interpretation of LRE. Weisel
(1988) acknowledges that when school environments are carefully
structured to support cooperative learning and interaction, that attitude
change can occur, but that unfortunately “ these prescribed conditions
represent an optimal situation that rarely exists” (p. 162). Those who
oppose full integration for all students regardless of type of disability cite
their view of insurmountable budget difficulties (Kauffman et al., 1988;
Semmel et al., 1991), and even those who support full inclusion for all
students (Sailor et al., 1989) admit that the programs they propose
represent an ideal.
While, generally, increases in contact between heterogeneous groups
seems to increase the opportunity for positive regard for students with
disabilities by their non-disabled peers (Gillies & Shackley, 1988; York et.
al. 1992), it would seem that closer proximity, by itself, is not enough
(Wiesel, 1988). As some researchers note, contact without careful
53
structure may have negative effects on attitudes toward persons with
disabilities (Wiesel, 1988; Lord et al., 1990). A number of authors
contend that specific instructional styles, such as the cooperative learning
methods studied by Johnson and Johnson (1982), and the Team Assisted
Individualization approach, studied by Madden and Slavin (1983), have
important social and academic effects improving both the quality and
quantity of contact between students with and without disabilities. One
might conclude from these findings that the type and structure of
classroom curriculums guiding interactions between students with
disabilities and their non-disabled peers have potential import and
warrant further research.
Many of these issues can readily be seen as evidence of attitudinal
and administrative barriers for students with disabilities. In addition,
much progress can continue to be made in the area of architectural
barriers.
As noted by Ferguson (1987), choices structuring our educational
systems must be consciously based on the question “ What is it w e want
our children to learn?.” A number of questions regarding the values
underlying our systems of education can be posed here. For example, to
what extent is the majority willing to learn tolerance of difference? To
what extent are w e as citizens willing to fund a system of education that
54
is based on tolerance of difference in order to prepare all students for
productive life in a pluralistic society (McWilliams, 1991)?
This section has reviewed the literature concerning the current
climate and state of mainstreaming and inclusion in schools. Pertinent
issues discussed included the degree of integration attained in schools in
the United States since the passage of P.L. 94-142 in 1975, the socio
political interpretation and implementation of least restrictive
environment (LRE), and the concept of a continuum of classroom
placements for students with disabilities versus full inclusion for all
students. Studies on the quantity and quality of contact between
students with and without disabilities, and the effects of such contact
were reviewed. The social and academic efficacy of mainstreaming for
students with and without disabilities was also reviewed. Studies
gathering information regarding teacher attitudes and opinions about
mainstreaming issues were reviewed. Possible sources of threat or
challenge with which students with disabilities may be coping were
summarized. Finally, a discussion of pertinent issues raised in the
literature review of mainstreaming was presented.
It could not be known, in advance, what situations in the high
school environment would be experienced as threatening or challenging
for students with disabilities, since such experience is subjective. But
those that may exist, according to this literature review, included
55
architectural barriers, attitudinal barriers, and administrative barriers.
The focus of this study was to gain information about how students
coped with such threats or challenges experienced in the mainstream
context. The following section provides a definition of the concept of
coping, a theoretical description of the coping process, and a review of
current research on coping behavior.
THEORIES OF COPING
Although the definitions of coping and stress continue to be
debated, coping is generally considered to be the physical, emotional,
intellectual, and/or psycho-social effort made by an individual to
maintain his or her equilibrium in the face of threat or challenge (Monat
& Lazarus, 1991). Some researchers theorize that a person’s coping style
may be determined by measures of personality traits and their coping
choices predicted accordingly, across varying situations (Scheier, Carver,
& Weintraub, 1989; Krohne and Rogner, 1982). Other researchers believe
that coping behavior must be understood within its particular context;
that the variety of external and internal stimuli in any situation combine
in a dynamic way to affect chosen coping strategies (Monat & Lazarus,
1991; Folkman & Lazarus, 1985: Seiffge-Krenke, 1993).
Haan (1977,1982) sees coping as part of a continuum of human
behavior including coping, defending, and fragmenting. Coping is
56
view ed as those efforts exerted by individuals to “ attempt to overcome
difficulties on equal terms” (p. 256), while defending is “ unyielding
fortification” (p. 256). She states that defense within an appropriate
context may be adaptive and likewise, coping is best studied and
understood contextually (Haan, 1982). Fragmentation is described in
terms of ritualistic and privatistic thinking and behavior, or “ delusional
ideation” (1977, p. 34). Haan (1982) states her belief that all humans, at
some time, utilize these three modes of behavior. Haan (1982) notes the
lack of consensus among social scientists as to the defined meanings of
the terms stress, coping and defending. She suggests that social
scientists’ unwillingness to accept that these concepts are value based is
part of the difficulty in reaching agreeable definitions (Haan, 1982).
For Folkman and Lazarus (1991), coping “ consists of cognitive and
behavioral efforts to manage specific external and/or internal demands
that are appraised as taxing or exceeding the resources of the person” (p.
210). It is thought to be a transactional process between a person and his
or her environment, that is, as a person’s coping behavior may influence
the environment, so likewise may a resulting environmental change
influence a person’s ongoing choice of coping strategy (Monat & Lazarus,
1991; Fondacaro & Moos, 1987; Coyne & Holroyd, 1982).
57
The concept of cognitive appraisal is important for the Lazarus
group (Monat & Lazarus, 1991; Folkman & Lazarus, 1985). Through
appraisal, the person questions ‘What is at stake for me in this
transaction?’ and secondly, ‘ What are my coping options?.’ The concept
of appraisal helps to make clear the subjective nature of the experience of
stress, since the meaning of any challenge or threat in the environment
may vary with the individual and with the context (Monat & Lazarus,
1991; Haan, 1982).
Coping strategies are categorized as problem-focused or emotion-
focused (palliative) coping (Monat & Lazarus, 1991). Examples of
problem-focused coping include information seeking, the use of restraint
w hen appropriate, and confrontation of responsible persons. Emotion-
focused, or palliative coping includes thoughts or actions “ w hose goal is
to relieve the emotional impact of stress" (Monat & Lazarus, 1991, p. 6).
Examples include “denying that anything is wrong” , “ detaching oneself as
in joking about what makes one feel distress” (p. 6), or meditating,
relaxing, or jogging to provide oneself with a distraction from the
stressful matter (Monat & Lazarus, 1991). Some examples of emotion-
focused coping are acknowledged as similar to what are traditionally
known as defense mechanisms. Monat and Lazarus (1991) believe that
58
humans use a complex combination of problem-focused and emotion-
focused coping in daily living.
The concepts of problem-focused and emotion-focused coping are
somewhat similar in meaning to the terms approach coping and
avoidance coping used by Ebata and Moos (1991) and others (Roth &
Cohen, 1986). Approach coping is “ problem focused and reflects
cognitive and behavioral attempts to master or resolve life stressors”
(Ebata & Moos, 1991, p.39). Avoidance coping “ tends to be emotion
focused and reflects cognitive and behavioral attempts to avoid thinking
about a stressor and its implications, or trying to manage the affect
associated with it” (p. 39). Ebata and Moos (1991) find that adolescents
who use approach coping strategies tend to be better adjusted, while
“greater reliance on avoidance coping is related to poorer adjustment” (p.
51).
It is not yet agreed upon whether avoidance coping behaviors
should be included as part of an adaptive definition of coping, or
whether they should be considered maladaptive and defined as
defending behaviors (Haan, 1982; Monat & Lazarus, 1991; Ebata & Moos,
1987; Roth & Cohen, 1986). It seems that avoidance coping, including
some of the defense mechanisms, is found to be a useful coping behavior
w hen immediately following a traumatic event (such as spinal cord
59
injury) on a short term basis (Roth & Cohen, 1986; Adams & Lindemann,
1974). As Ebata and Moos (1991) state, “the positive effects of avoidance
are those that facilitate or eventually enhance approach coping” (p. 51).
COPING AND DISABILITY
Wright (1980) also discusses coping, or the coping versus
succumbing frameworks of persons with disabilities. For Wright, to adopt
a succumbing framework, is to view disability, and therefore the life of
the person with a disability, as primarily a grievous tragedy, with little
or no focus on a hopeful view of life as a challenge in which an
individual may develop and grow as a person. The succumbing
framework focuses on the disability itself as the central issue. The coping
framework, on the other hand, is one in which the value of the
individual’s assets are the primary focus, and in which persons take an
active role in dealing with the challenges of life with a disability.
Wright’s (1980) view of coping for people with disabilities suggests two
fields of action. One focuses on environmental change, with a view to
dealing with architectural and social barriers, and discriminatory hiring
practices in the community. The second focuses on change within the
individual, emphasizing the necessity to obtain medical and
psychological assistance to reduce disability, on education and the
60
acquisition of skills, and on restructuring of personal value systems, so
that an individual may set realistic goals and be proud of meeting those
goals. These changes within the persons value system are suggested with
a view to “seeking solutions and discovering satisfactions in living”
(Wright, 1980, p.275).
Yet, it seems that the journey a person with a disability must make
between a “ succumbing” framework and “coping” framework is often
impeded by the stigma that is assigned to disability. For any person who
has been labeled as a result of some personal trait, whether physical or
behavioral, the possibility of being stigmatized by the larger society
exists. Stigmatization, according to Goffman (1963), is the attribution of
disgrace to a person’s identity as a result of some undesirable personal
difference, or “ a failing, a shortcoming, [or] a handicap” (p. 3), and
represents a source of possible threat or challenge with which adolescents
with disabilities must cope in the mainstream context. A discussion of
Goffman’s (1963) concept of "passing" as a struggle or effort to manage
stigmatized identity w ill be presented later in this chapter (see p. 83) as a
type of coping strategy that has been often used by persons with
disabilities.
An important aspect of coping with disability is how it is
interpreted within one’ s own life and value system. Wright’s (1980)
61
discussion of the coping versus succumbing framework for persons with
disabilities encompasses this concept, and others are in agreement (Blum,
1983; DeLoach & Greer, 1981; Davis et al., 1985; Carlson et al., 1990;
Biklen et al., 1989). Blum (1983) studies friendship and social patterns of
adolescents with spina bifida and notes that while ambulation plays an
important role in the maintenance of a satisfactory social life, it is
secondary in importance to how the adolescent perceives his or her own
degree of disability. DeLoach and Greer (1981) concur in their view that
the meaning that disability has for each individual “ depends on how he
interprets that disability, not on how severe the disability is” (p. 20).
The following section presents current research on coping behaviors
of people both with and without disabilities. A broad range of coping
research is viewed which may suggest possible coping strategies and
sources of challenge for adolescents with disabilities in a general
education high school context.
COPING RESEARCH
A study was done by Zeitlin and Williamson (1990) of the coping
characteristics of children, ages three months to four years. The children
were separated into two groups, those with disabilities (n=1035) and
those without disabilities (n=405). The subjects were rated by observers
over a period of at least six weeks, using the Early Coping Inventory
62
(Zeitlin, Williamson, and Szczepanski, 1988) which views behavior in
three categories; sensorimotor organization, reactive behavior and self
initiated behavior. Results showed that children with disabilities scored
significantly lower than their non-disabled peers in all three categories.
It is noted that a full range of effective and ineffective coping behaviors
were observed in both disabled and non-disabled groups. The authors
suggest the importance of emphasizing self-initiated adaptive functioning
in early intervention programs (Zeitlin & Williamson, 1990).
A study done by Timberlake (1985) compared behaviors used to
cope with the fact of physical difference among twenty 8 to 11 year old
elementary school children with disabilities. The children were grouped
according to whether they were born with a disability or had acquired a
disability between ages three and six. Data about the children’s
“ defensive-adaptive coping” (p. 238) behaviors were collected through
structured interviews with the parents. Results demonstrated that
children who acquired a disability were more likely to use “ eradication of
the difference” (p. 238) as their choice of defensive-adaptive coping
behavior, than children who were born disabled. This type of coping
behavior is described as pretending that the physical defect is cured, or
verbally denying that the physical defect exists. Results showed that
children who were born with a disability were more likely to use
63
“ symbolic repair" (p. 238) of the physical difference than the children who
had acquired a disability. This type of coping is thought to involve such
behaviors as the child collecting objects and pretending that the collected
items make up for the physical difference, or the child pretending to be a
famous, talented, or heroic person. Timberlake (1985) discusses the
general adaptation of both groups of children and states that “ four out of
five of these children use five or more of the study’s 10 defensive-
adaptive mechanisms at least several times a w eek” (p. 242). She
suggests that coping with physical differences in the mainstream
elementary classroom may be overwhelming in addition to the academic
and developmental tasks these children are struggling to accomplish
(Timberlake, 1985).
A study by Patterson and McCubbin (1987) reports the construction,
development and validity testing of a coping assessment done with a
group of 709 adolescents, ages 11 to 18. The study compared the
adolescent’s coping behaviors to substance use. Results reflected very
similar coping patterns between males and females, except that females
more frequently used seeking and developing social support as a coping
behavior, while males more frequently used humor as a coping device.
Results also demonstrated that adolescents who cope by seeking to solve
family problems, by seeking spiritual support, and by engaging in
64
demanding activity were significantly less likely to use substances.
Conversely, adolescents whose coping behaviors included ventilating
feelings, investing in close friends and developing social support were
significantly more likely to engage in substance use. The need for peer
acceptance and the need to establish independence from the family were
suggested as factors that may contribute to placing adolescents at risk for
substance use (Patterson & McCubbin, 1987).
Fontana and Dovidio (1984) studied the relationship between
stressful life events and the school-related performance of two groups of
high school students. The students (n=150) were grouped according to
their scores on the Jenkins Activity Survey (Glass, 1977). Type A
students were those who scored seven or above on the survey, which
measured reported level of challenge, problem-solving and general
activity present in the student’s current life. Type B students were those
who scored less than seven on the survey. Results showed that Type B
students demonstrated poorer school performance related to increased
stressful life events, than did their Type A counterparts, whether the
events were perceived as controllable or not. The Type A group
demonstrated only one result that was statistically significant (p<.05):
stress that was considered to be uncontrollable by the Type A students
correlated with absenteeism. Fontana and Dovidio (1984) suggest that
although stress has its effects on both types A and B, that the two groups
65
utilize different coping strategies, so that the effects of stress appear in
different ways.
A study done by Ebata and Moos (1991) looks at the coping
responses of 190 adolescents divided into four groups; adolescents with
rheumatic disease, adolescents with conduct problems, depressed
adolescents and healthy controls. The instrument used to measure coping
responses was the Coping Response Inventory-Youth form. Coping
measures were compared to measures of psychological well-being,
psychological distress, and behavior problems. Results indicated that the
depressed adolescents and the adolescents with conduct problems were
significantly more likely to use avoidance and emotion-focused coping,
w hile adolescents with rheumatic disease and the control group were
more likely to use approach and problem-focused coping. It is of interest
to note that only one of the behaviors in the emotion-focused coping
category, seeking of alternative rewards, was associated with the
psychological measures of higher well-being and less distress. Ebata and
Moos (1991) touch briefly on the concept that avoidance coping may be
useful within a generally problem-focused pattern of coping behavior.
A qualitative study done by Charlson, Strong, and Gold (1992)
examines isolation and reported loneliness among 23 “outstandingly
successful” (p. 261) high school students with severe or profound
66
deafness. This study viewed students in three situations; total
mainstream placement, partial mainstream placement, and separate
residential school placement for students with hearing impairments.
Qualitative data gathered and presented in case study format, reported
the experiences of these outstandingly successful students within each
placement; whether they reported feelings of loneliness, and if so, what
they did to combat it. “ Outstanding success” was defined as
demonstrating achievement academically, socially, athletically, a
combination of these, or “ impressive ability to achieve ‘against all odds’”
(Charlson et al., 1992, p. 269).
Results demonstrated that most of the students in all groups
experienced isolation and reported varying amounts of loneliness, with
communication difficulties as either the direct or exacerbating cause. The
study found that the students in residential school placement and whose
parents were also deaf, to be the best adjusted; this group was found to
have fewer communication difficulties with both peer group and parents.
This group rarely or never stated concern about lack of contact with
hearing teenagers. However, some of the students demonstrated isolation
from their families, related to living away from home, or to lack of skill
in using American Sign Language on the part of hearing family members
(Charlson et al., 1992).
67
Students in the total mainstream placement found themselves
somewhat socially isolated from the hearing community at school, even
though excelling within that setting in sports or academics. These
students coped with loneliness by becoming active in community
activities, both within and outside of the hearing community, or by
staying in social contact with non-hearing friends from schools previously
attended (Charlson et al., 1992).
The students placed in partial mainstream programs were found to
be experiencing isolation and loneliness, again, even though very
successful academically, and whether or not their communication with
parents and family was good. Interestingly, one academically superior
student in this group characterized his deafness “ as an advantage”
because it required that he "pay more attention in class than the other
students” (Charlson et al., 1992, p. 268). The students, generally, tended
to cite difficulty with communication as the reason for their sense of
isolation, and most did not mention or consider alternative school
placement as a possible solution.
The authors conclude, citing Diver’ s (1990) findings that adolescents
experience loneliness and isolation when they identify themselves as
‘ different’ from the norm. Charlson et al. (1992) state that adolescents
with hearing impairments should be informed that these feelings are
68
normal. In addition they suggest the importance of contact with non
hearing peers, good signing skills among parents and family, and the
teacher’s role as facilitating contact between the hearing and non-hearing
community at school, as well as sources of acceptance, support, and
motivation for students (Charlson et al., 1992).
A study of coping strategies among 51 adults, ages 17 to 78, with
diabetes mellitus, done by Kvam and Lyons (1991) compares subjects
methods of coping and their perceptions of social support with their
general health status. This study found that coping strategies that
focused on problem-solving correlated positively (non-significantly), with
general well-being, while a wish-fulfillment or a detachment (refusal to
believe) method of coping correlated negatively with well-being.
College educated subjects yielded higher well-being scores than those less
educated. Also, while no significant association was found between
problem-solving coping and perceived social support, persons using
detachment (refusal to believe) as a method of coping, perceived less
support from their families. The authors suggest increased emphasis on
diabetes education programs may encourage problem-solving coping
skills for persons with this disease (Kvam & Lyons, 1991).
A study was done by Fondacaro and Moos (1987) view ing the
interrelationship between social support and coping among 380 clinically
depressed men and women, receiving treatment over a 12 month period.
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The researchers attempted to determine if social support had more
influence over coping capabilities, or if coping capabilities carried more
w eight in determining the presence or absence of social support. Results
showed that while coping and social support are associated, “ neither
family support nor problem-solving coping had a predominant causal
influence over the other” (p. 669). While there was a significant decrease
in depression over the 12 month period for both men and wom en, there
were differences in reported methods of coping and perceptions of social
support. Generally, women reported increases in family support and
affective regulation, and decreases in emotional discharge. For men,
there was an association between reports of increases in family support
and decreases in emotional discharge coping. Also, men reported less
use of information or support-seeking coping behavior over the 12 month
period. The authors suggest that “ support and coping may have both
independent and joint influences on stress and adaptation” (Fondacaro &
Moos, 1987, p. 671), and that future research should study these
relationships within specific social contexts.
A study by Folkman and Lazarus (1980) was done using the Ways
of Coping checklist to assess the coping strategies used in daily living of
100 community residents aged 45 to 64. The study took place over a 12
month period. Self-report questionnaires were provided to subjects, to be
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completed between monthly interviews. Results supported the view that
persons use a combination of problem-focused and emotion-focused
coping, rather than using one type in preference to the other. Results
also showed that problem-focused coping was more likely to be used for
work-related stressors, while emotion-focused coping was more likely to
be used for health-related stressors. The authors note that w hile men
were more likely to use problem-focused coping in a work situation, than
w ere women, the difference was associated to the differences in job
duties between the men and women. The authors conclude, em phasizing
the complex, transactional nature of the coping process, stating that “ the
assessment of coping will always have to face the issue of self-report
versus observational and inferential techniques” (Folkman & Lazarus,
1980, p. 236).
A pilot study done by Blom, Ek, Irwin, Kulkarni, Miller, and Frey
(1982) looks at coping, social competence and quality of life among a
sample of nine adults with physical disabilities, who were considered to
be leading satisfactory lives and doing “ remarkably well" (p. 4). This
“ inductive and exploratory” (p. 5) study was done to gather information
about these three aspects within the lives of the subjects, to gain
understanding about how these phenomena can be supported “ for
achieving the goals of social integration, least restrictive alternatives, and
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independent living” (Blorn et al., 1982, p. 27). The method used for
gathering data was a structured interview of four to six hour duration, at
a cite of the subjects choice. Six of the subjects were female, w hile three
were male, and their ages ranged from 24 to 41 years. The nine subjects
represented a range of type of physical disability, including spina bifida,
spinal cord injury, dwarfism, disfigurement from severe burns, blindness,
and musculo-skeletal disorders. All of the nine subjects were very active
in self-advocacy organizations for persons with disabilities, “ a clearly
biasing factor” (p. 19) in the study. Results demonstrated no significant
relationship between the three aspects of coping, social competence, and
quality of life, and gender, or whether or not the person’s disability was
congenital or acquired. The results also found that, overall, the rankings
for coping process and competence outcome, for each subject, were very
similar to each other, with some variations. Five of the nine subjects
stood out as “ productive, independent, coping, competent, and satisfied
members of their communities” (Blom et al., 1982, p. 25). Two of the
subjects scored lower on independent living, one having recently lost a
job, and the other unemployed, but active in leisure and community
pursuits. The two remaining subjects, while ranking high in independent
living and productivity, were dissatisfied with their quality of life, one of
these reporting frustration in a number of areas. In conclusion, the
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authors emphasize their belief that study of the strengths of individuals,
rather than taking a “ pathology orientation” (Blom et al., 1982, p. 27), can
help to identify characteristics and choices that work in favor of persons
with disabilities as they seek to establish satisfying lives.
Rueda and Mehan (1986) discuss the concept of "passing” for
persons with learning disabilities. Passing may be defined as “ the
management of undisclosed discrediting information about self”
(Goffman, 1963, p. 42) and can be viewed as an example of an emotion-
focused coping strategy. Rueda and Mehan cite, among others, Goffman
(1963), Ramos (1973, 1979), Garfinkel (1967), and Edgerton (1967) in their
study which compares the "strategic interaction” (p. 146) involved in
passing for persons with learning disabilities, to that which is involved in
“ metacognition, a concept associated with the highly sophisticated
reasoning of experts mastering complex bodies of knowledge” (Rueda &
Mehan, 1986, p. 146). Of interest to this study is the authors’ point that
passing may involve both elaborate stage setting before the "performance”
(Goffman, 1963), as w ell as spontaneous improvisation (Garfinkel, 1967)
to assist in managing a presentation of identity, when the threat of the
devaluation of social status is perceived. Especially this idea of
spontaneous improvisation can be viewed as a coping response to threat,
as it occurs in context. Rueda and Mehan (1986), citing Edgerton (1967),
summarize this phenomenon well: “Particularly when identities are
threatened, management and improvisational work enables people who
perceive themselves to be at risk, to shroud themselves in a ‘ cloak of
competence’ (Edgerton, 1967,).” (p. 147).
A case study done by Iphofen (1990) looks at how a person with
petit mal epilepsy struggles to control the stigmatization related to this
disease. Using Goffman’s (1963) synthesis of stigma as a frame of
reference, the study takes the form of a “selective, edited autobiography
based on a diary, interview and self-report which was necessarily
‘worked up’ as a practical accomplishment” (Iphofen, 1990, p. 450) by the
researcher in collaboration with the subject. The data gained in this
study relate to the very subtle differences between the experience of
struggling to accomplish “ passing" for a person whose disability is
relatively covert and not visible, as opposed to the experience of
"passing” for a person whose disability is quite visible. This directly
relates to Goffman’s (1963) analysis of the “ discreditable” versus the
“discredited” aspects of "spoiled identity” (p. 4) for persons who have
need to deal with stigmatization by the majority or by general society.
The study points out that, in addition to being relatively covert, the petit
mal seizures, as related in the experiences of this individual subject,
occurred at random, without any forewarning, a situation requiring its
74
ow n unique management, or collection of coping strategies, especially
within a social environment (Iphofen, 1990).
Bogdan and Taylor (1982) have presented a study of two life
histories in autobiographical form of persons labeled "mentally retarded” ,
which provides an insider’ s view of how it feels to go through life
bearing such a label in modern American society. Both informants had
experienced placement in state schools for “the so-called mentally
retarded” (Bogdan & Taylor, 1982, p. xi) as a result of the inabilities of
their families to care for them. The autobiographies give a detailed
description of everyday life as it was experienced by the informants in
that setting. The following statement of the informant introduced as “ Ed
Murphy” , w ho states that his congenital disability was described as
“ severe retardation and cerebral palsy” (Bogdan & Taylor, 1982, p. 30), is
of interest to this study as an example of emotion-focused coping. In
relation to the threat of being labeled ‘retarded’ , Ed states:
It’ s a struggle. I’ll tell you it’s a constant struggle as long as I can
remember. . . . You can’t give in to that mental retardation image.
You strive to be extra careful. You struggle to be not what the
image of the retarded is. You can’t look the way they say you are if
they call you retarded. (Bogdan & Taylor, 1982, p. 90)
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The other informant is introduced as “Pattie Burt", and describes a history
of behavioral difficulties, which she was told characterized her as
“ emotionally disturbed” (p. 107-108) and "retarded” (p. 107). Her
description provides a good example of emotion-focused coping w ith pity
from others:
People saying ‘ Oh, you poor child,’ soon I am going to hear that too
much. I am just trying to show them that I am not a poor child. I
want them to see what this grand child is doing for herself. The
poor child stuff just doesn’t turn me on now. Before I was looking
for pity because I felt sorry for myself. I have grown up about it. I
have realized that things have happened that I can’t change.
(Bogdan & Taylor, 1982, p. 189)
In addition, both informants provide examples of problem-focused
coping as well, in the confronting of responsible persons and in the active
coping that is required everyday in employment and in independent
living. The authors conclude stating their opinions that application of the
label “ retarded” , and other negative labels of its kind, is a practice that is
“ stigmatizing; it tells the world that you don’t measure up” (Bogdan &
Taylor, 1982, p. 217). The authors, on the basis of the experiences related
by the informants in this study, advocate the abandonment of the practice
of labeling persons according to their deficiencies, and seek to promote
76
environments and services which will “ accommodate all persons in the
society” (p. 225).
This section has provided a definition of coping and a variety of
theoretical views of the coping process. In addition, quantitative and
qualitative studies of coping have been presented. In this review of
research on coping, active coping behaviors, such as, taking direct action
to solve problems, and confrontation of responsible persons, are found to
be associated with greater psychological and emotional well-being (Kvam
& Lyons, 1991; Ebata & Moos, 1991), and with lesser likelihood for
substance use in adolescence (Patterson & McCubbin, 1987). Ebata and
Moos (1991), however, also note that emotion-focused or avoidance
coping can be viewed as useful within a generally problem-focused
coping style. The study by Folkman and Lazarus (1980), finds that the
majority of humans use a complex combination of both problem-focused
and emotion-focused coping strategies. Essentially, the Lazarus group
differs in their approach to the study of coping, because it is their
hypothesis that, while styles or patterns of coping can provide some
knowledge about possible coping behavior in future instances, coping
w ill be best understood within specific situations and contexts. In their
words, “ efforts have to be made to capture the ways that coping efforts
change throughout an encounter. Until the dynamic quality of coping is
77
described, our assessment procedures remain incomplete” (Folkman &
Lazarus, 1980, p. 236).
A variety of qualitative studies reviewed here dealt with the
management of stigmatization (Rueda & Mehan, 1986; Iphofen, 1990;
Bogdan & Taylor, 1982). These efforts on the part of people with
disabilities may be viewed as emotion-focused coping strategies used to
deal with the effects of labeling and attitudinal barriers.
Although not all of the studies reviewed here have dealt with
adolescent subjects, the studies selected were chosen because they
provided a broad range of information about the coping processes of
persons with disabilities. As theories of coping suggest, it is probable
that coping strategies take many forms and it was expected that a w ide
variety of coping behaviors would be seen among high school students
with disabilities as they dealt with integration issues in a mainstream
school context.
COPING AND OCCUPATIONAL THERAPY
The motivation of the human to make use of his or her capacity for
productivity and creativity is asserted to be a central focus for
occupational therapy (Reilly, 1962; Kielhofner & Burke, 1985). In order to
exploit the fullness of one’s capacity for these qualities, it is necessary to
78
have access to a broad range of the socio-cultural environment. This is
one of the tenets of the Independent Living Movement (ILM) which has
prompted all of the professions concerned with rehabilitation to broaden
traditional views of adaptation (Pennington & Sharrott, 1985).
Coping, a strategy of adaptation (White, 1974), has been viewed by
occupational therapy as useful for people with disabilities because it has
been thought to "improve the physical and psychological functions of the
patient to allow for successful reentry into the everyday w orld”
(Pennington & Sharrott, 1985). Coping skills, such as the confrontation of
responsible persons, and taking direct action to solve problems, are
view ed as increasingly important to people with disabilities because these
are valuable skills for gaining access, as well as for dealing with the
challenges and/or threats met in an ever-widening environment (Blom,
Ek, & Kulkarni, 1984; Pennington & Sharrott, 1985).
While the Model of Human Occupation (MHO) does not specifically
address coping, Kielhofner (1985) does deal with the larger concept of
adaptation. He views occupational functioning as "a subcategory . . . of
human adaptation” (p. 63). He states that “ A person is considered
adaptative who is able to meet the challenges, expectations, and
opportunities of the environment and who behaves so as to maintain and
enhance personal integrity and potentials” (p. 63).
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Within the MHO (Kielhofner, 1985), coping behavior w ould fall
within the realm of the volition subsystem, which is composed of three
symbolic motivational constructs; 1) personal causation, 2) values, and 3)
interests. Coping, from this view, is the process of making choices based
on values, interests, and “ what the person believes himself or herself
capable of doing” (Kielhofner & Burke, 1985, p. 15). Kielhofner addresses
the intrapersonal process of choice, and how it takes place within the
human, stating that this process “ is complex and presents a vast unknown
area for future exploration” (1985, p. 23). He goes on to say that adaptive
choices “ reflect a strong influence of volition, or willing, in occupational
behavior. Choices for behavior often incorporate necessary compromises
and persons may sometimes choose because they are responding to
constraints or expectations from internal factors and the external
environment” (Kielhofner, 1985, p. 23).
The profession of occupational therapy, by its nature, is involved
with and interested in how humans with disabilities cope with adverse or
challenging circumstances. Coping was defined in this study, as those
efforts exerted to maintain balance in the face of threat or challenge
(Monat & Lazarus, 1991). All humans, including people with disabilities,
experience challenge on a daily basis. Coping for people with disabilities
may have pervasive significance as when dealing with a major life-style
80
change because of the loss of the use of one’s lower extremities, as in
spinal cord injury. It is also of importance within smaller trials, as when
negotiating access to services such as note-takers or sign-language
interpreters for students with disabilities. Or coping may take the form
of action as simple as advocating for oneself by letting bus company
management know that some of their drivers are not providing adequate
service.
Coping behavior is of major importance at many junctures during
which a person with a disability may be living with the process of
rehabilitation. It is often critical immediately following traumatic injury
or illness (Ben-Sira, 1983), or while the person goes through the grief
process and begins to redefine themselves and their lives (Helfrich,
Kielhofner, & Mattingly, 1993). It can be critical at turning points, such
as making the choice to undergo surgery to alleviate severe spasticity, or
w hen a young person newly diagnosed with schizophrenia is discharged
from the psychiatric unit to return home with his or her family.
Occupational therapists are concerned with helping clients to cope with
these issues. In the words of Llorens (1969), “Facilitating growth and
developm ent during and following traumatic experiences is the task of
occupational therapy” (p. 95).
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Coping skill is thought to lead eventually to mastery of
environmental challenge, or competence, when such skill is carefully
developed (White, 1974). Indeed, a balance of challenge in a given
environment is thought to facilitate the development of coping skill
(Csikszentmihalyi, 1984; Fine, 1991; Llorens, 1969). Yet the concept of
careful balance is critical, as Fine (1991) notes: “ Although mastery is both
developed and sustained by manageable challenges, challenges that are
too demanding or too dangerous defeat resources for coping and
reintegration" (p. 494). It is when environmental challenge becomes
overwhelming to levels of personal resource and defeat becomes
imminent that intervention is needed. The experience and tradition of our
profession makes occupational therapy well suited to undertake this task.
DISCUSSION AND CONCLUSION
While it is necessary, in a naturalistic inquiry, to enter the field as
free of preconceived notions as possible, it is also true, as noted by
Lincoln and Guba (1985), that we do not enter the field either "empty-
handed . . . [or] empty-headed” (p. 209). Numerous questions about
adolescent coping, about the values underlying the philosophy of
education, and about how one’s interpretation of disability changes, can
be posed as this review of the literature is concluded.
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While there may be some qualities that describe adolescent
development generally, it seems important to note that each adolescent
develops individually and this may be especially true for adolescents
with disabilities. As Wright (1983) notes, while intellectual development,
for example, may lag behind for adolescents with disabilities, spiritual
development may exceed that which is normally found among able-
bodied adolescents. The ability to look at and question what meanings
have been assigned to one’s own disability seems an important part of
the personal development process for persons with disabilities.
Students with disabilities in the mainstream high school context
may be learning to cope with their own feelings about being different as
w ell as with the responses of others. Wright’ s (1983) view of coping, or
the coping versus succumbing framework, is especially enlightening to
this issue, because this model of coping was conceived with people with
disabilities in mind. Wright’s (1983) discussion of “ as if” (p. 117)
behavior parallels Goffman’s (1963) concept of “ passing” and relates to
coping behavior in the sense that passing, or "as if" behavior is sometimes
consciously done "because of the belief that awareness on the part of
others would contribute to disturbed social relations. This is one basis on
which the cosmetic hand instead of the hook" (Wright, 1983, p. 117) is
used. In this case, passing can be viewed as an active coping behavior
purposefully used to ease social interaction. Wright (1983) cites
additional examples in which "as if” behavior is strategically used.
Alternatively, “ as if” behavior may be used with the motive of
concealment when the person with a disability has the belief that “ having
a disability inherently makes the person less desirable, less good” (p.
118). Note Wright’s view that the person’s interpretation or belief about
his or her disability is the significant factor. This type of “ as if” or
passing behavior parallels more closely to emotion-focused coping or
defending behavior. But, as stated by Ebata and Moos (1991), such
behaviors may be useful if they lend support to a general pattern of
“approach coping” (p. 51). It is hoped that a qualitative study of coping
behavior can help to uncover individual strengths and environmental
elements which support adaptive coping strategies.
This literature review has presented background theory and
research pertinent to the main concepts of interest in this study. Theories
of adolescent development were reviewed initially and consideration
given to developmental variation for those with disabilities. Definitions
of mainstreaming and inclusion were presented, background information
and research about the mainstream school context was reviewed, and
possible sources of threat or challenge within the school context were
listed. Coping was defined and theory and research on coping was
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presented. The importance of research on coping to the field of
occupational therapy was also presented. The section concluded with a
discussion of issues significant to coping with disability in a pluralistic
society. The following chapter on methodology provides specific
information about how this study was carried out.
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CHAPTER III
METHODOLOGY
This chapter presents the methods and procedures that were utilized
in this study. A description of the research approach introduces the
section, followed by criteria for subject selection, instrumentation used,
and the methodological protocol employed.
RESEARCH APPROACH
The approach to this study was qualitative. The study explored
coping strategies used by adolescents with disabilities to deal with threats
or challenges perceived in the mainstream high school context. This
information can be useful to increase general knowledge in the field of
occupational therapy about coping behaviors and how such behaviors can
be supported to improve adaptation for adolescents with disabilities. It
was expected, in a qualitative study such as this one, that some aspects of
the research design would change during the initial stages of
implementation, data collection, and analysis (Bogdan & Biklen, 1982;
86
Lincoln & Guba, 1984).. This has been true for this study. Changes from
the original proposal are noted throughout the following sections.
SUBJECT SELECTION
The subjects selected for this study were students with physical
and developmental disabilities selected from within the Anaheim Union
High School District. Because of the time limitations inherent in
qualitative study, the number of subjects was limited to three. The
selected subjects were within the age range of 16 to 22 years. While it
was planned to select subjects with physical disabilities who were placed
in a general education classroom for a minimum of two hours per day, it
was found that the range of possible subjects from which selection was
made, rarely met this criteria. Therefore, subjects were selected who had
disabilities with physical and developmental characteristics, were placed
in a special education classroom on a general education campus, and who
had varying amounts of experience with general education placements at
their school. Subjects were interviewed during school hours with their
teacher’s consent. In addition, each of the students consented to one
home visit during their personal time. Permission to access student
enrollment information for the purposes of this study was obtained from
the Anaheim Union High School District. Students were then contacted
by this researcher in person, via a screening interview conducted at the
87
high school with their teacher’s consent, both, to determine whether the
subject qualified for participation, and to request participation. The
student’s parents were then contacted by phone to arrange for informed
consent. The consent forms, which advised the students’ of their rights,
w ere then signed by parents and students prior to beginning
participation in this study.
INSTRUMENTATION
The primary instrument through which data are gathered in a
qualitative study is the human observer (Lincoln & Guba, 1985; Spradley
& McCurdy, 1972). Qualitative data are best gathered by the human
researcher through "interviewing, observing, mining available documents
and records, taking account of nonverbal cues, and interpreting
inadvertent unobtrusive measures” (Lincoln & Guba, 1985, p. 199). The
researcher, through interview, observation, and study of documentation,
acted as the primary data gathering instrument in this study. Three
instrumentation tools were used to assist data gathering in this study: a)
a student interview format, b) a teacher interview format, and c) a system
of classification to organize the data gathered.
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Student Interview
Interviews with students consisted of open-ended questions seeking
to gain information about the students experience of events and/or
feelings perceived to be threatening or challenging and their ensuing
coping responses. The initial student interview format was composed of
broad questions derived from this study’s research questions, related to
general physical, psychosocial, emotional and/or cognitive sources of
threat or challenge. However, it was found necessary to add questions
that probed for examples of specific events or feelings that students had
experienced as sources of challenge or threat, such as events found to be
fun, difficult, easy, or boring, or evoking feelings of excitement, anger,
and so on. See Appendix A for an example of the revised student
interview format. The duration of the interview process was a minimum
of 10 hours, arranged into ten one-hour sessions. For the researcher’s use
in transcription of interview data, the interviews were recorded on audio
tape, when this was permissible by the student.
Teacher Interview
Interviews with the general education teacher and/or the special
education consulting teacher, consisted of open-ended questions which
sought to gain information from the teacher’s perspective about what
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phenomena in the mainstream setting he or she has observed to be
challenging or threatening to the particular student. In addition,
information was sought regarding any coping responses on the part of
the particular student that the teacher may have observed in the
mainstream setting. Also, while not included in the original teacher
interview format, questions were added which sought to gain
fundamental information about the implementation of the mainstreaming
and inclusion processes at the high school. The duration of time spent in
interviewing each teacher was a minimum of two hours. See Appendix B
for an example of the revised teacher interview format. Again, for
transcription purposes, the interviews were recorded on audio tape when
permissible with the teacher involved.
Data Classification
After completion of data collection and transcription, the data
gathered for each case was separately coded. The coded categories,
derived from the research questions, included coping strategies, sources
of challenge or threat, developmental tasks, values, emotions, social skills,
and student experience of mainstreaming or inclusion. Additional
categories were derived that reflected data gathered within the individual
cases, including intelligence, valued events, and involvement in ethnic
culture at the high school. Data descriptive of the high school context
was gathered and coded also. See Appendices F through I for a
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presentation of the categorical data pertaining to each of the participants
and the context.
In addition, a visual representation of the sources of challenge
experienced and of the coping strategies used by each of the participants,
was derived from the coded data. These visual aids are presented in
Chapter V as Figures 1 through 6. These visual representations of the
students’ coping strategies and sources of challenge were derived from
the coded data in the following manner. All coping strategies and
sources of challenge were coded, and broken down into categories, for
each individual student. Each time a coping strategy was reported by the
student, or was observed, either by the researcher or by a participating
teacher, the student received one point in the pertinent coping category.
For example, let us imagine that the student reported one episode of
asking for help with a challenge. In addition, that student’s teacher
reported that, in his or her experience, the student was w illing to ask for
help when needed. These two episodes would equal two points under
the coping strategy category 'asking for help’ for that student. When all
of the coded data points were totaled, the Figures were designed
portraying the number of points in each category, shown as the zero to
seven scale on the Figures. The terms, never, rarely, sometimes, often,
and typically, were assigned, by the researcher, along the point scale to
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provide additional descriptive understanding of the Figures (See Figures
1 through 6 on pages 167-182). Figures 2, 4, and 6, depicting the
students’ sources of challenge were derived in the same fashion as were
the figures depicting the students’ coping strategies.
Triangulation
The technique of data triangulation as discussed by Lincoln and
Guba (1985) was utilized in this study since data about the informants
were gathered from three sources, the student, his or her teacher, and
researcher observations of the student’s spontaneous behaviors in context
(See Model of Triangulation, Appendix D). Triangulation as a technique
is considered to increase credibility of the findings in a study, in the
sense that if a qualitative detail is proposed by one source, it can be
reiterated or contradicted by a second or third source. Triangulation is
described as a kind of “ contextual validation” (Diesing, 1972, p. 147). It
is thought that the use of triangulation “ increases the depth of
understanding an investigation can yield” (Berg, 1995, p.6).
RESEARCHER BIAS
Because qualitative study in a natural context requires the close
involvement of researcher and subject, as they collaborate to clarify the
data collected (Lincoln & Guba, 1985; Bogdan & Biklen, 1982), the
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subjective experiences of the researcher are called into play. Thus, the
probability for researcher bias exists. Although bias cannot be completely
controlled (Bogdan & Biklen, 1982; Spradley & McCurdy, 1972), two
w ays of controlling its influence are suggested by Bogdan and Biklen
(1982). The first is that the researcher should include his or her
subjective impressions as a part of daily field notes, and the second, that
field notes should be critiqued by a colleague. Both of these methods
were employed for this study.
METHODOLOGICAL PROTOCOL
Following the subject selection process as described earlier in this
chapter, interviews with students were conducted in a quiet informal
setting of the student’s choice. Settings used for interviews included an
unoccupied classroom at the high school, the student’s home, a
conference room at the high school, and outside in the student quad. As
stated earlier, interviews were recorded on audio tape, with the
individual’s permission. Data were transcribed as soon as possible
following the interview, with follow-up interviews utilized to clarify any
information that was unclear.
The students’ files were reviewed for background information, to
aid in thick description (Geertz, 1973) of the individual students’
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situations within the high school context. This review took place once for
each student after the third week of data collection.
Informal observation by the researcher was ongoing throughout the
study, while scheduled classroom observations took place during the
final five weeks of data collection. Scheduled classroom observations
did not exceed three hours per student and were conducted in twenty to
thirty minute increments. Informal activities observed included
spontaneous lunch-time and break-time activities, and student
participation in field trips. More formal extracurricular activities
observed included student participation in an Associated Student Body
meeting, and student attendance at a dance concert celebrating a cultural
event. Transcription of data took place immediately or as soon as
possible following observation. As stated above, the data were coded
after all data collection and transcription were completed, according to
categories derived from the research questions.
Interviews with general education and/or special education
teachers were conducted last, and followed the same protocol as the
student interview.
Following coding, the categorized data were then taken through the
process of narrative analysis, as delineated by Polkinghorne (1995), in
which “ the researcher organizes the data elements into a coherent
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developmental account” (p. 16). Polkinghorne (1995) and others (Clark,
1993; Helfrich, Kielhofner, & Mattingly, 1994; Mattingly, 1994) assert that
“ emplotted narrative” (Polkinghorne, 1995, p. 7) expresses “a kind of
knowledge that uniquely describes human experience in which actions
and happenings contribute positively and negatively to attaining goals
and fulfilling purposes” (Polkinghorne, 1995, p. 8). The individual case
studies, thus, took on the form of emplotted narratives, or stories which
sought to express "the emotional and motivational meaning”
(Polkinghorne, 1995, p. 11) of the situations and actions of each of the
participants, as these related to coping strategies within the mainstream
high school context.
The following list of possible coping strategies derived from the
literature review remains pertinent to data that have been gathered via
observation and interview with the selected subjects.
• Talking with friends about perceived threats or challenges (Ben-Sira,
1983; Folkman & Lazarus, 1985; Fondacaro & Moos, 1987; Patterson &
McCubbin, 1987).
• Seeking social support in the presence of perceived threats or
challenges (Ben-Sira, 1983; Carver, Scheier, & Weintraub, 1989; Dise-
Lewis, 1988; Folkman & Lazarus, 1985).
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• Avoidance of perceived stressful situations (Ebata & Moos, 1981;
Folkman & Lazarus, 1980; Patterson & McCubbin, 1987).
• Asking for assistance with perceived threats or challenges (Dise-Lewis,
1988; Fondacaro & Moos, 1987).
• Ignoring perceived threats or challenges (Folkman & Lazarus, 1980).
• Isolation and withdrawal in view of perceived threat or challenge
(DeLoach & Greer, 1981; Folkman & Lazarus, 1985).
• Using humor in the presence of perceived threat or challenge (Folkman
& Lazarus, 1980; Patterson & McCubbin, 1987).
• Denial of the presence of perceived threat or challenge (Carver et al.,
1989; DeLoach & Greer, 1981; Ebata & Moos, 1991).
• Remaining passive in the presence of perceived threat or challenge
(Dise-Lewis, 1988; Ebata & Moos, 1991).
• Using aggression in the presence of perceived threat or challenge (Dise-
Lewis, 1988).
• Regulation of emotion in the presence of perceived threat or challenge
(Dise-Lewis, 1988; Fondacaro & Moos, 1987; Ebata & Moos, 1991).
• Venting of emotion in the presence of perceived threat or challenge
(Carver et al., 1989; Dise-Lewis, 1988; Ebata & Moos, 1991; Fondacaro &
Moos, 1987).
• Confrontation of responsible persons (Folkman & Lazarus, 1980).
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• Taking direct action to solve a problem (Carver et al., 1989; DeLoach &
Greer, 1981; Folkman & Lazarus, 1985; Ebata & Moos, 1991).
• Seeking spiritual support (Carver et al., 1989; Patterson & McCubbin,
1987).
• Seeking alternative rewards (Dise-Lewis, 1988; Ebata & Moos, 1991).
• Positive reinterpretation of perceived threat or challenge (Carver et al.,
1989; Folkman & Lazarus, 1985; Ebata & Moos, 1991).
• Giving up when a situation is perceived to be too threatening or
challenging (Carver et al., 1989).
• Seeking diversions in the form of distracting or relaxing activity to cope
with emotional threat or challenge (Folkman & Lazarus, 1985; Fondacaro
& Moos, 1987; Carver et al., 1989; Dise-Lewis, 1988; Ebata & Moos, 1991).
• Engaging in demanding activity to cope with perceived challenge or
threat (Dise-Lewis, 1988; Patterson & McCubbin, 1987).
• “Passing” intellectually, that is, pretends to understand academic or
social input in order to appear competent as a way of coping with
perceived threat to social status when, in fact, the subject does not
understand (DeLoach & Greer, 1981; Iphofen, 1990).
Also, the following list of additional coping strategies were found
to be in use by the participants in this study when faced with threat or
challenge in the mainstream high school context.
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• Following rules when faced with perceived threat or challenge.
• Persisting in activity participation when faced with perceived threat or
challenge.
CONCLUSION
This chapter has presented the methods and procedures that were
used in this study. Procedures for subject selection were presented and
the utilized methodological protocol was summarized. While the human
researcher was the primary “ instrumentation” through which data were
gathered in this qualitative study, formats for the student interview, and
the teacher interview were also used as supporting instrumentation. The
processes of data collection, transcription, and coding were summarized,
and the process of narrative emplotment of the data was briefly
described. Finally, a list of possible coping behaviors, generated from
the literature review, that adolescents with disabilities might demonstrate,
when faced with threat or challenge in the mainstream high school
context, was presented.
The following chapter presents the data in the form of individual
narratives. These narrative emplotments or stories seek to express the
unique personal meaning of the contextual situations of each of the
students as they dealt with individual coping challenges.
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CHAPTER IV
RESULTS
This chapter presents the results of this qualitative study of the
coping strategies of students with disabilities within a mainstream high
school context. The three case studies introduced here, in the form of
emplotted narratives, are the result of data collection, transcription, and
coding that were generated in answer to the following research questions.
1. H ow could coping behavior be discerned in adolescents with
disabilities in the mainstream high school context?
2. What, if any, were the physical, cognitive, psychosocial, an d /or
emotional challenges or threats with which students with
disabilities must cope in the mainstream high school context?
3. What strategies, if any, did the student with a disability report
using to cope with the challenges or threats experienced?
4. What coping behaviors, or the absence of them, could be
observed by the researcher in regard to these issues?
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5. What coping behaviors, or the absence of them, were observed
by the general education and/or special education teacher in regard
to these issues?
Each emplotted narrative is structured according to the following
seven criteria as guides for generating a case history from qualitative data
as proposed by Dollard (1935) and restated by Polkinghorne (1995).
1. Description of cultural context.
2. Description of the embodied nature of the protagonist.
3. Description of significant others as they relate to the actions and
goals of the protagonist.
4. Description of the protagonist’ s “ vision of the w orld”
(Polkinghorne, 1995, p. 17) including his or her plans, goals,
motivations, etc.
5. Description of the protagonist’s historical life context as
background to his or her current situation.
6. Description of the bounded temporal period in which the case
history begins, progresses and ends.
7. The final draft of the case history should present an emplotment
of the gathered data into a unified story which meaningfully
describes the protagonist’s responses and actions.
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Results of the study contribute information about the varieties of
coping behaviors that individual students with disabilities found useful
within their life contexts at high school. The emplotted narratives
presented in this chapter are stories configured to depict the general
coping styles of each of the participants. In addition, examples of specific
coping strategies in use by the students and sources of challenge
experienced by the students are also occasionally included in the plots.
However, discussion of the nature and uses of student coping strategies
are not included in the emplotted narratives presented here; a thorough
discussion of student coping strategies and sources of challenge is
presented in Chapter V of this document. As noted by Lincoln and Guba
(1985), data gathered through the study of individual cases, as in these
narratives, should not be used to make generalizations to the larger
population, but should be viewed as knowledge contributing to “ working
hypotheses” (p. 123) in regard to the subject of study.
THE CONTEXT
While details about the context will be described within each
narrative, general descriptive data will be included here (See also
Appendix I). In the interest of confidentiality, the context w ill be
referred to as Greenwood High School.
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Greenwood High School appears to be a typical high school within
its geographic region. It has existed within its community for at least
twenty years. While it cannot be described as a beautiful campus, it has
some aesthetic qualities in the jacaranda trees set around the school site,
and in the small rose garden at the center of the quad and landscaping at
other specific points. Greenwood is a campus of m iddle age; the trees
situated around the school are large, but not yet of venerable age. The
benches around the quad area have been painted and repainted, showing
the multiple coats through peeling layers.
Greenwood is a place of calm, work-a-day order. It is expected that
the students will act and behave within the ruled boundaries, and they
do so. While there are occasional disruptions to this sense of order, they
are dealt with quickly and firmly. Yet much of adolescent behavior tests
the limits of this order, and small infringements sometimes go unnoticed.
The social environment at Greenwood is noteworthy. Teachers and
other staff take notice of strangers on campus; one senses that they feel a
responsibility to be protective of this environment. Yet, all
communication is done with helpful courteousness, and a view to good
public relations. It is apparent that definite lines of communication exist,
and that many of them are well-used. One can observe communication
between teachers, office staff, administration, maintenance staff, and
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students, constantly during an average day. Typically, interactions
between teachers and students are respectful, and amicable; they are
often even friendly.
While the presence of the school administration can be felt, it is not
obvious. One is aware of its presence in noticing teachers and aides
poring over the individual classroom phone bill, or in hearing teacher’s
and staff’s concerns over budget difficulties which may result in staffing
cuts. While administrative policy has its effects on the Individualized
Education Programs of each of the students with disabilities, neither are
these effects obvious, until one studies the situations of individual
students, as in the following narratives.
More specifically, within the special education department, perhaps
the most noticeable quality is that the teachers communicate with each
other, often, and with their aides continuously, during the day. They
work at keeping one another informed about issues related to the
students and to the carrying out of the planned curriculum. Keeping
one’s sense of humor while working within the demands of special
education seems to be an often used coping strategy among teachers and
aides.
The students often address the teachers and aides by their first
names, and this is the acceptable status quo. The students, like their
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peers in general education, find opportunities to “ goof off” if the teachers
are not attending. However, any unacceptable behavior, such as physical
aggression toward others, is dealt with quickly and firmly. Discipline is
carried out in a manner that reflects belief in the student’s rights and
dignity as a person.
Generally, the prevailing values within the special education
department appear to be the importance of education, the importance of
communication, and respect for individual rights, especially those of
person’s with disabilities.
In addition, there was also a value for the practice of educational
activities within the realistic constraints of the existing administrative and
political system.
The following sections present the collected data for each of the
participants in the form of narrative emplottment. Each narrative
represents data collected via interview and observation within a ten week
period at Greenwood High School.
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Narrative Number One
“I’m working on my behavior. . . .
I have to watch my mouth.”:
Coping in a Confused Environment
The protagonist of this narrative is a young man named Scott. He
is a student at Greenwood High School, and has just turned age 21. Scott
has the look of a regular high school student about him; he has green
eyes and brown, slightly curly hair, worn in a short, ‘retro’ style haircut.
He dresses, as many of the students do, in teeshirts, denim pants, and
tennis-shoes. He carries his belongings in a black nylon backpack on the
back of his wheelchair. As people come to know Scott, the most
noticeable quality about him is his engaging smile.
Scott is a person with a disability. He is paraplegic as a result of
cerebral palsy, and has limited use of his left hand. Perhaps the most
difficult aspect of Scott’s disablement, is the neurological impairment of
his oral-lingual musculature, making it hard for him to speak with
clarity. In addition, Scott has had a seizure disorder, that is now
controlled through the use of medication.
Scott was born into a family that was unable to care for him, and so
he has been cared for, since the age of two, by a foster family. He has
lived with his foster parents for nineteen years. He has foster brothers
and sisters, some of whom have grown up and moved out on their own.
H e has two brothers and one sister at home, right now. Scott sees his
grandmother, from his family of origin, during school breaks, since she
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lives in a neighboring city. Scott also sees his father, who lives in El
Salvador, a few times a year. These times are important to him.
Scott lives with his foster family in a large residential neighborhood
in an area of sprawling suburbs. His house is yellow, with brick trim,
has attractive landscaping, and is on a cul-de-sac. His home is about
three and a half miles from Greenwood; he uses the district bus to get to
school. One thing that is difficult for Scott about his home environment
is that there is no ramp for him to enter or exit his house. He cannot
easily get to his wheelchair and exit, unless he has help. H e does not use
his wheelchair inside the house; he moves from place to place by using
his arms.
Scott’s memories of his early school years include those of a
therapist that was very good to him. He thinks of her as someone who
was a special person in his life. Scott has had many therapists, including
speech therapists who helped him with speaking more clearly. He has
had other friends while growing up who seem to all move away, or go to
different schools, and so he doesn’t see them anymore, and this makes
him sad and a little angry sometimes.
Scott attends Greenwood High School; he has one more year to
complete at Greenwood, after this one, and then he will graduate. He
has had lots of friends during his time at Greenwood, although, again,
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many of them have graduated and moved on with their lives. He does
not see these friends anymore, and it is hard on him, emotionally, but he
tries not to care. However, Scott is a friendly person and he seems to
continue making new friends at Greenwood, so that helps.
Getting around the high school campus is not a problem for Scott.
Although there are still a few classrooms at Greenwood that are not
wheelchair accessible, most of them are, and Scott finds that he is able to
go, virtually, anywhere on the campus that he wants to go. While it
takes a little effort, Scott manages to negotiate even the cafeteria line,
which some people in wheelchairs find troublesome. Scott knows the
w ay around the campus very well, and has no trouble getting to his
classes on time. He is quite adept with his wheelchair, yet he knows that
he has to be careful about going too fast, for safety reasons.
Scott is highly persistent. While he knows many students at
Greenwood, a lot of these students are people he does not know very
w ell. Since his speaking is sometimes hard to understand, people have to
be willing to be patient and work together with Scott in order to
understand his speech. Scott’ s speech patterns get easier to decipher
after people get to know him, but it can be difficult at first. Some people
are patient about this; others are not. Scott sometimes gets frustrated and
a little angry at having to struggle to communicate. But when he persists
and is able to get his message across, it makes him feel great.
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Scott has had many different school experiences during his time at
Greenwood. He has taken driver’s education, which, although having
taken it with a friend and having enjoyed it, Scott found to be difficult.
He has been placed in general education classes, such as history, and life
science; he enjoyed these classes. He especially liked these classes
because they rendered him with the opportunity to make friends with
different people, and he often found the class material to be interesting
and challenging. He especially liked the life science labs.
Scott had life science in Ms. Curtis’ class. He liked the class and
mentioned that he especially enjoyed talking to the girls in the class.
Sometimes he found the class material to be pretty difficult, but if he ever
needed help, the other students were happy to help him when he asked.
He found himself talking to the other students during class, and Ms.
Curtis w ould occasionally get after him to get back to work. He would
give Ms. Curtis his most attractive smile, and get right back to work. He
managed to stay on good terms with her that way. He still sees her
around campus and says hello to her from time to time.
Sometimes, Scott has such a good time talking to people at school,
that it gets him into trouble. On the one hand, Scott likes talking to
others and getting to know them; sometimes this seems more interesting
than doing his schoolwork. On the other hand, he knows that his
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teachers want him to concentrate on his work. Mrs. Walters and Mr.
Benjamin in special education have talked to Scott a number of times
about how he has to learn to socialize with others at appropriate times,
instead of during class. Scott also knows all of the office and
maintenance staff at the high school, and has been told by his teachers
that he has to be careful not to interrupt them while they are supposed to
be working. This poses a problem for Scott, because he does like talking
to people, and people like talking to him. Maybe it is especially hard for
Scott to refrain from talking because he so enjoys the experience of
getting his message across, successfully. But since it has been getting him
into trouble, he has given it serious thought, and realizes that he must
learn to restrict his socializing to appropriate times.
Sometimes Scott gets frustrated at his situation, though. H e
complains that people are so supportive of his efforts at communicating
with others, and then they turn around and give him a hard time about
talking too much! He finds it annoying! He gets a little moody, because
people fail to understand how hard he has to work just to get his point
across. And sometimes it seems like there are too many other people,
mainly his foster parents and his teachers, who get to tell him w hat to do
in life, and that he has little control over what happens. He thinks about
his future a lot, about maybe getting a job, and living on his own, but
this would be difficult because, where would he live? Would he be able
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to manage his own Social Security? Who would help him with the
everyday struggles of living with a disability? How would he get
himself to the doctor? These are questions Scott has for which he has few
answers.
His Individual Education Program (IEP) describes Scott as having
deficits in speech intelligibility because of reduced oral motor
coordination associated with cerebral palsy. For this reason, and because
he uses a wheelchair, Scott is placed primarily in a separate special
education classroom. It is recommended that he have not more than one
hour per day of general education classes. However, Scott has all of his
classes in the special education classroom, this year. He likes Mrs.
Walters and Mr. Benjamin; he knows they are good people. But the class
has about 25 students this year and sometimes the classroom is too noisy
for him to concentrate on his work. He finds it easier to concentrate in
Ms. Marshall’s room. He spends a good amount of his class time
working on computer games that help with reading and math skills. He
sometimes gets to use the drawing and coloring programs, also, which he
enjoys. Mostly, the computer is pretty useful, but he has gotten used to
many of the programs, and wants to try some new ones.
The special education department at Greenwood often plans field
trips for the students; they have been able to go to many different places
including the local shopping mall, a few amusement parks, and a
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professional baseball game. Scott enjoys the field trips. He is glad to go
when he can.
He had an especially good time, this spring, at a field trip that the
class went to at a local university. This was a ‘ Special Games’ event for
students with disabilities. Special education classes from all of the
surrounding schools came to participate. It was an opportunity for the
students to play games and sports and participate in competition if they
wanted to do that. Scott was in a wheelchair race at this event. It was
quite an effort, but he completed the racecourse with good speed, and
really had a great time doing it.
Sometimes Scott thinks that some of the class assignments in special
education are too childish for him. He likes working in the gardening
class and on recycling newspapers in Ms. Marshall’s class; at least these
things seem like they have some practical use. A person might be able to
use some of these skills to get a job, someday. Scott is looking forward
to having vocational experience class again, although some of the job sites
they get seem a little childish, too. For example, some of the students are
working at a party supply store, doing sorting of balloons and putting
candy into boxes. This seems a little juvenile and Scott is not sure he
would want this job placement, although he thinks it might not be bad to
try it.
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Through the special education department, Scott had a vocational
experience class last year, that allowed him to work at a golf course
bussing dishes and cleaning tables at the golf course cafe. Scott really
liked this job. He liked the golf course environment, and was glad to
have the opportunity to work. He got into trouble a couple of times for
talking with friends when he was supposed to be working. His teachers
told him to be sure he finished all of his work, and to do his best at it.
Then, he got in trouble for having a disagreement with one of his co
workers. Then, one day, Scott took a set of keys from a golf cart. His
manager at the golf course found out about it, and discussed it with Mrs.
Walters. The two of them decided that Scott was not taking his job
placement seriously. As a result, Scott lost his job at the golf course.
Since then, his teachers have been reluctant to place Scott at another work
experience site. They have set up goals on his Individual Education
Program (IEP) to try to encourage Scott to be more careful about his
behavior. When he makes progress with these goals, his teachers told
him, they would consider another work experience placement for Scott.
Scott does not like going to his IEP meetings. He has difficulty
expressing to his parents and teachers his ideas about his life at school.
He knows he is interested in vocational experience classes, and his IEP
reflects this. But his teachers do not yet seem to believe that he w ill be
able to behave appropriately at a job site, because even though he has
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been working on improving his behavior, and his IEP says that he will
have vocational experience class this year, he has not been placed into
that class. Maybe (in this researcher’s view) Scott’s teachers are worried
that if they place him into vocational experience class, that he w ill not
have a successful experience. Or maybe they just have too many
students, and have forgotten about his program goals.
This year, Scott has tried hard to work on his behavior. He has
tried working alone sometimes, so that he can concentrate on his
assignments. He has been careful about talking with school staff, so that
he does not distract them from their work. He has worked at not talking
to his friends in class. He has experienced some success with these
efforts and hopes that his teachers have noticed.
But, after a time, Scott decided that hoping for his teachers to notice
the improvements in his behavior was not enough. He had concerns
about his future and wanted to do something to help him define a plan
for his life as a working adult. Besides, his teachers were always so
busy; it might be a long time before they noticed his efforts, and he did
not want to wait. So, one day this spring, Scott asked Mrs. Walters if she
w ould help him sign up for a work experience class in summer school.
Mrs. Walters said that she was glad Scott had asked; she sent him to
take care of some of the paperwork at the counseling office at
Greenwood. Scott learned from the people in the counseling office that
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there would be a delay; it was too soon for him to sign up. But, Mrs.
Walters told him that this was no problem, and that they would m ove
ahead with the plan to get Scott signed up for work experience class,
w hen the time came.
Scott was glad that Mrs. Walters was willing to sign him up for the
summer school class, but it was still a little confusing. If (in this
researcher’ s view) he had asked at the beginning of the year, w ould they
have placed him in vocational experience then? Scott thinks that
vocational experience class is important for him, and now, this w hole
year has passed by without it. Maybe Scott’ s foster father is right: they
sometimes set up IEP goals, but then do not follow through on them.
H ow (in this researcher’s view) can Scott make use of the IEP system, if
the system changes at times that seem arbitrary? Why (in this
researcher’s view ) should Scott take his IEP goals seriously if no one is
attending to whether or not he meets them?
A few weeks later, Scott learned that his foster family did not want
to allow him to participate in this summer school work experience class,
because they had vacation plans and wanted Scott to be with them. Scott
felt a little discouraged, but decided that the work experience class
w ould have to wait until Fall. He did not think he could manage to care
for himself at home alone, and get himself to work without the help of
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his family, w ho would be on vacation. Scott really wants to gain some
work experience, but sometimes it seems as if there is no one else in his
life w ho cares about this, except him.
Scott knows that an important part of growing up for young men is
having relationships with young women. He has many friends at school
w ho are girls. He is especially friendly with a few certain girls. One of
them is a person who uses a wheelchair also. Scott thinks maybe she is
becoming a better friend.
Scott has another friend who is not disabled and w ho he sees a lot
of at school. Her name is Andrea. One day Scott was in the special
education classroom, waiting for the bell to ring before he w ent to fourth
period. Andrea was among the people in the room, and she came over
to say hello to Scott. He was glad to see her, and began telling her that
he had been to a restaurant over the weekend with his father to celebrate
Scott’s birthday. They had decided to celebrate a couple of weeks early
because his father had to leave to go back to El Salvador. Scott had
really enjoyed the time with his father and the restaurant outing, so he
was very excited about it. In his excitement, Scott laughed as he told
Andrea about it, making it harder for her to understand his speech. She
teased him about this, but he didn’t mind. Although she got a little
confused, thinking that today was Scott’s birthday, she seemed to
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understand most of the story, and invited Scott to come and visit her
during a detention that she had to attend. Then the bell rang and they
both w ent on to their classes.
Scott likes Andrea, but he is not sure about the nature of her
interest in him. Does she want to be just friends? W ould she like him
for a boyfriend? He is not sure, and she lives far away from him. Scott
thinks it would be hard for him to visit a friend w ho lives so far away,
since he does not like to use the public bus system. He knows it would
be difficult for his family to give him a ride so often; to a job, to social
events, and to visit a girlfriend. Scott is not sure that he w ould want to
start a relationship, anyway, because it is so hard when relationships
break up. One of his sisters went through it recently, and it was very
hard on her.
Sometimes, Scott has difficulty communicating with his foster
parents. Although he knows that they care about him, it seems as if they
don’t have much confidence that he will be able to work and have a job
someday. Scott’s foster parents think that some of the goals that his
teachers have set up for him are too difficult for him to accomplish.
After all, Scott is disabled. His foster parents don’t think Scott will be
able to manage his own affairs as an adult, such as getting himself to the
doctor when he needs to, or managing his Social Security. His foster
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parents don’t believe that Scott will be able to do these things, so they
don’t teach him how to do them. Scott worries about them from time to
time, because they have some health problems of their own.
Next year, the high school district will be opening up another
general education high school site for students with disabilities, and the
new high school is closer to Scott’s home. Ms. Marshall told Scott that he
m ight be able to move over to the new school setting, and be in her class
if he wanted to, but Scott thinks he will stay at Greenwood, since next
year is his last year before graduation.
Although Scott is not sure what he will do after high school, he
thinks about it often. He hopes to gain some work experience through
the vocational experience class next year. Mrs. Walters has told him of
some possible job sites she is working on. One of them is a video rental
store, right near the Greenwood campus. Another option for work
experience might be found on the high school campus, itself.
Scott is looking forward to next year’ s events with both hope and
fear.
While he is afraid that work experiences might not turn out exactly the
way he would like, he really hopes that he will be able to do w ell at
whatever opportunities come his way. It is very important to him to be
able to have a job, and work as an adult, someday.
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In this researcher’ s view, an ideal future for Scott w ould consist of
an independent life-style that includes work, educational, and social
challenges. With training in independent living skills, Scott would learn
to do much of his own self-care at home, including cooking and laundry.
Scott would learn to use a public bus on his own, and this skill would
afford him transportation to work, to community college, and to visit
family and friends during his leisure time. If he wanted to, Scott could
attempt driver’s education and driver’ s training in a motor vehicle
adapted for people with mobility impairments, to see if it is possible for
him to become an independent driver.
Scott would be able to find work in a number of possible settings.
He could work as an inter-office mail person in a large organization. He
could bus tables and do custodial work in a cafeteria. Scott could
become expert at negotiating the various financial resources available to
people with disabilities and then become a counselor to young people
with disabilities who need help understanding the system.
In this ideal world, Scott would become an active member of his
local center for independent living, making use of their peer support
groups, and opportunities for social-leisure participation. If he found it
useful, Scott could hire the services of an attendant at home on a regular,
or as-needed basis.
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In the long term, Scott would use coping strategies to manage his
resources in a way that would reflect the quality of life that he chooses
for himself. For Scott, quality of life means sharing enjoyable experiences
with friends and family. In an ideal world, Scott could arrange to do this
on his own, as an independent working adult, a few times a w eek or
more if he chose. From this basis of independent living, Scott w ould
continue to learn about and use personal and community resources to
help him build the future he chooses.
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Narrative Number Two
"I just go along with what they w a n t. . .
what they think w ill be better for me, you know.”
Coping in an Environment of Benevolent Neglect
The protagonist of this narrative is a young man named Jason, a
seventeen-year-old who attends Greenwood High School. Jason usually
enjoys his day at school, but he finds that he often has a real problem
w ith waking up in the morning to get ready to go to Greenwood. He
manages to get started every day with his mom’s help, but it is just hard
to wake up, get cleaned up and dressed, eat something, and be ready for
the bus which picks him up at seven o’ clock in the morning. He
sometimes resolves to himself that he will not come to school the next
day, because he does not want to deal with his morning routine. But,
every day, he finds himself at school, anyway. Once he gets to
Greenwood, Jason likes being there. And he even manages to wake up
completely by the time he gets to Marcy’s class for first period.
Marcy, Mrs. Walters, that is, is one of his teachers in special
education. Jason likes the teachers in special education; he feels that they
are very good to him and, in fact, that they are people who are making a
difference in his life. Jason especially finds it helpful to talk with Mr.
Benjamin from time to time if he has anything troubling him. But, Mr.
Benjamin has been out sick for part of this year.
Jason, being of somewhat slight build, appears slightly younger
than many students his age. His hair is black, and cut very short,
although when it is allowed to grow out, it takes on a slightly tousled
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look. Jason has a sparkling sort of smile, that is often accompanied by a
searching, thoughtful look; he has a habit of thinking something over
before he makes comment on it. His eyes are dark brown and he
occasionally wears glasses during study in the classroom. Jason dresses
comfortably, wearing sweat pants, teeshirts, and black sandals over
cotton socks. H e sometimes wears a watch. He ‘drives’ a powered
wheelchair, upon the back of which hangs a knapsack style backpack
which is made of a woven fabric of Mexican design. Jason’s intelligence
and his sense of humor are, perhaps, his most obvious personal qualities.
Jason is a person with a disability: he is quadriplegic as a result of
cerebral palsy. However, he has enough hand control to drive his
powered wheelchair, and make limited use of a computer keyboard.
Jason lives at home with his family, about three miles from Greenwood
High, in an area of sprawling suburbs. Their home is modest but
comfortable. Jason is bi-lingual, speaking both English and Spanish, as
do most of his family members. Besides his parents and three siblings,
Jason has extended family who live nearby in his community; some of his
cousins have attended Greenwood High in the past. Jason’s parents have
many responsibilities, such as caring for young children, and working at
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their jobs; for this reason, they are often not able to be present for events
at Jason’s school, such as meetings with his teachers.
Jason’s memories of earlier school years include a good friend in
junior high, with whom he no longer has contact, because this friend
attended different schools. Jason is sorry to have lost that friendship, but
he seems to accept these sorts of changes as part of life. His other
memories of early school years are mostly that he missed a lot of school
because of time spent recovering from surgeries. Just last year, at the
time of Christmas vacation, Jason missed some time at Greenwood
because of a surgery. The nature of the surgeries is related to relieving
musculo-skeletal pain resulting from spasticity in his arms and legs.
Jason’s experience as a student at Greenwood is pretty comfortable
these days, but it was not easy for him when he came to Greenwood
High as a new student. He found himself feeling nervous about
beginning school because he did not know what to expect from the
people or the environment. While he is a person who likes people, he
was unsure about whether he would like this new school environment,
and whether these new people would like him. He found that meeting
and talking with the people at Greenwood made all the difference for
him. For the most part, Jason likes being a student at Greenwood.
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Jason’s Individual Education Program (IEP) describes him as having
multiple handicaps and developmental delays which require a small
group setting for academic support. For this reason, Jason has been
placed in a separate special education classroom at Greenwood High.
Jason spends the majority of his day in the special education classroom,
leaving it at second period to go across campus to adaptive physical
education, then returning to the special education classroom for third and
fourth period. He comes outside to the ‘ quad’ area for lunch when the
weather permits, which is most of the time. The quad is where most of
the students ‘hang out’ at lunch; there are sometimes organized activities,
meetings, etc., that also occur there, either during lunch or at other times.
After lunch, Jason spends fifth and sixth periods in the special education
classroom.
The special education classroom can be a busy place; w hile it
sometimes appears chaotic, there is an underlying order, and the students
know how they are expected to behave. However, the atmosphere is
pretty relaxed most of the time, with different people coming and going,
students as well as adults. The classroom is something like a home
environment, sometimes, with the students as the children in the family,
and the teachers and aides as parents. Jason has good relationships with
both the teachers and the aides. Sometimes (in this researcher’s view) it
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seems as if the adults in Jason’s classroom are more like Jason’s friends,
than they are like parents. Although he likes the class, Jason finds that
the amount of activity and noise in the room, sometimes makes it hard
for him to think. While the special education classroom is an interesting
place, it is probably not sufficiently challenging (in this researcher’ s view)
to help Jason develop his potential. While Jason spends all but one
period in Mrs. Walters room, many of the other students come and go
during the day, as their schedules change each hour.
Jason’s life at Greenwood High School is comfortable, if perhaps too
predictable. Jason sometimes wonders about the larger high school
environment outside of special education, although he has not yet had
much opportunity to explore it. Jason is not one to complain, and
although he values all opportunities to participate in different activities,
he trusts that his teachers and parents know what w ill be best for him.
Yet, some of the classes sound interesting. He has heard from other
students about the Life Science labs, in which the students do biological
dissections. The idea of this sounds pretty repulsive to Jason, but he
would like to have the opportunity to try it.
Jason’s school work consists of work on reading skills, and math
skills, some of these on a computer, social studies, and daily living skills,
such as cooking. Also, Jason goes on community outings with his class,
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to shopping malls and amusement parks. Through these field trips, Jason
has many opportunities to practice handling money, and dealing with the
general public.
Jason and the other students in special education, also receive some
training with public bussing, which they sometimes use on the field trips.
While this could be good training for him, Jason does not yet trust
himself to use a public bus, independently. Besides, his mother does not
like the idea of Jason using the public bus, by himself.
This past fall, the special education department arranged for the
students to go on a field trip to a shopping mall, just before Halloween.
During this outing, Jason had a slightly uncomfortable learning
experience. But since Jason enjoys looking for the humor in life, he was
eventually able to laugh at himself about the following experience.
Jason had brought money from home with instructions from his
mother to buy some Halloween candy. This was a worthwhile task, and
one Jason enjoyed doing. He selected a good assortment, and purchased
it. Later, as he was ordering his lunch at the Mall Food Court, he
realized he had run out of money; he must have spent too much on the
H alloween candy. It is easy for people to become overly zealous when
buying candy for Halloween, and Jason is no exception. However, this
had never happened to him before, so he asked his teacher, Mr.
Benjamin, for advice in this matter. Mr. Benjamin, no doubt thinking that
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Jason should not skip lunch, assisted Jason as he went back to the store
where the candy was purchased, refunded enough of it to allow for
lunch money, then returned to the Food Court to get something to eat.
W hile Jason was mildly embarrassed about this turn of events, he later
found he could easily see the humor in the situation. For awhile he
resolved to let his mother do her own shopping, but this soon passed.
This was a learning experience for Jason.
Sometimes, the special education field trips take place during after
school hours. While the bus is sometimes available to help with
transportation after school, sometimes it is not. When there is not a bus
available, Jason has to work out getting a ride from his family. His
family, either his brother or his mom, are usually willing to give Jason a
ride if the car is available, and if they are not busy with other things, but,
it can be hard to arrange that. Sometimes, it just does not work out.
Jason finds that getting a ride can be a problem.
Using a paper shredder to shred old documents is a task that Jason
has learned this year in special education. He had expressed an interest
in using machinery as a possible career choice for himself, and so his
teachers arranged for him to have use of the paper shredding machine.
Jason found that shredding was interesting at first, but that the novelty
soon wore off. In fact, shredding paper for very much time at all, has
become boring for Jason. But he does not think it would be right to
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complain about things. Jason is concerned that if he were to complain,
his teachers might feel that he does not appreciate their efforts on his
behalf. Besides, he feels that he has been given paper shredding as a
responsibility; it is his job to make sure that all of the paper shredding
that needs to be done, is completed. There are now other students w ho
are also learning the use of the machine, so he is not doing as much
shredding as he had been.
Jason finds it helpful, sometimes, to talk things over with Mr.
Benjamin. Mr. Benjamin has told Jason that he must learn to speak up
and let others know what his wants and needs are, because people are
not able to ‘read his mind.’ Jason is learning that taking responsibility
for letting others know what his needs are, is helping him to be in
control of his life.
As w e know, Jason is a person who does not complain and who
does his best to get along with everyone. In fact, he is a person w ho w ill
sometimes inconvenience himself, so that life will go smoothly for others.
Jason does not want anyone to become upset with him; he would much
rather cooperate so that everything goes along smoothly. One day, the
class was having a cooking activity; they had shopped for vegetables and
were going to make a salad. They purchased lettuce, carrots, tomatoes,
cheese, and avocado for the salad, and planned to put it together that
afternoon during the period following lunch. Jason was looking forward
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to it; he enjoys cooking. But something happened; a college student
doing some research at Greenwood came by to see if Jason could spend
time with her during the period following lunch. Jason really wanted to
do the cooking activity, so he told the college student about it, telling her
that he could change his plans if she needed him to. The college student
thought that the cooking activity sounded like fun, and that Jason
shouldn’t miss it, so they scheduled their business for a later time. While
Jason is getting better at speaking up about what he would like to be
doing, he does not think it would be appropriate to speak up with his
teachers in this way. After all, he thinks, they know what is best for
him.
The special education environment can be pretty fun sometimes.
Early this spring, there was a Valentine’s Day party in one of the special
education classrooms. Many students participated, and this party took
up most of the day. Since the party took place in what is Jason’s usual
classroom, he was present for most of it, and he enjoyed it very much.
There was music playing, Valentine’s Day decorations, and many
students visiting who aren’t often there, just ‘hanging out’ and socializing.
Jason really liked it and wished that they could ‘party’ at school like this
more often.
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As w e know, Jason finds humor in many situations. This spring,
the weather was particularly rainy, much more so than usually expected
in the area of Greenwood High. One rainy day, Jason, having just
finished his movement therapy at the school gymnasium, was faced with
‘driving’ his wheelchair back across the quad to Mrs. Walters’ room
where he has third period. It was raining and the wind was blowing,
but Jason, wearing a raincoat with a hood, decided to do his best to get
to third period. As Jason began this usually easy journey, the wind blew
the hood of his coat over his eyes, so that he could not see where he was
‘driving.’ This caused him to slow his progress, considerably, until one
of the physical education coaches came by, and helped him to move the
hood back out of his eyes, so that he could continue on. So this was
good, and Jason was almost all the way to his destination, when his hood
blew down over his eyes again, causing him to nearly collide with a
metal post. Afterward, Jason laughed about this episode, although
getting a little embarrassed at the idea of being stuck in the rain. Safe
‘driving’ in rough weather conditions was a new experience for Jason;
next time he will know better what to expect.
An outing to the mountains this past winter was planned for the
students in special education, and Jason was among the group that went.
They had planned to use an inner tube for sledding on the snow. Jason
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had had to convince his mother that the students would be careful, that
there would be plenty of teachers and aides along to assist, and that it
w ould be safe for him to go. As it turned out, he did not get to try the
sledding, but participated in many snowball fights, with a great deal of
enjoyment.
Jason knows that an important part of growing up for young men is
having relationships with young women. There are many girls at school
that Jason knows, and some that he considers to be friends. Jason
believes that finding a girlfriend is something he would want to do on
his own, without help from others. He wants to be sure that he likes
them for w ho they are.
Like many adolescents, Jason enjoys listening to music. He
sometimes listens to the “ oldies” radio stations, and finds that he likes
"The Supremes.” But more often, Jason listens to Spanish music on the
radio, and watches Spanish programs on television as well. Recently, an
Hispanic singer named Selena, one of Jason’s favorites, was killed. He
was shocked and saddened to hear of this; it was a tragedy that he
could hardly believe. He followed the story in the news to discover the
details of the murder, and the resulting legal process for the alleged
suspect. He found that he had little compassion for the suspect, a person
who took the life of one whose career appeared to be so promising. He
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sometimes finds himself becoming saddened when he hears one of
Selena’s songs on the radio.
Since he is bi-lingual, Jason is able to talk with students at
Greenwood whose English is not yet very good. He has been able to act
as an interpreter for people, on occasion. While Jason has friends at
school who are also Hispanic, some of whom are in special education,
Jason does not think that being Hispanic is of any particular significance
at Greenwood; the Hispanic students are the same as the rest of the
students.
It happens that a large percentage of students at Greenwood High
are members of the Hispanic community. Greenwood has a large and
active MEChA (Movimiento Estudiantil Chicano de Aztian) organization,
and Jason has a few friends who participate in MEChA activities.
MEChA is a student organization designed to encourage understanding
of Hispanic, and especially Mexican cultural heritage within the school
and surrounding community through extracurricular events. This spring
MEChA sponsored a Cinco de Mayo celebration on campus with
decorations, food, and entertainment in the Quad at lunch time. The
campus, and especially the Quad area, was decorated for the day in red,
green, and white paper streamers; large bunches of helium-filled balloons
of the same traditional colors helped to make the school atmosphere
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festive. At lunch time, the entertainment began with traditional Mexican
music; Jason noticed that they were having a little trouble getting the
sound system working, so there was a slight delay in starting the
presentation of traditional Mexican dance that the students had planned.
Since Jason knew two of the performers, one male and one female
dancer, involved in the dance presentation, he was interested and
managed to get a very good seat in the first row to watch this event. The
female dancers wore white dresses with tiered skirts and red trim, while
the male dancers wore white shirts and white pants. The entertainment
was w ell attended; the overall atmosphere at lunch time that day was
peaceful, yet with a holiday feeling. Jason enjoyed the activities that day,
and remembers other Cinco de Mayo celebrations he has attended in the
past with his family, at a park near his home. Jason’s mother worries
about attending the celebration at the park these days, because she has
heard of gang-related incidents occurring at the park, and so the family
has not attended for a couple of years.
While Jason seems to enjoy aspects of his life as a student at
Greenwood, he does not have a clear idea of what the goals of school are
supposed to be. In fact, if he were given the option, he says he would
discontinue coming to school at all. He has not yet given much thought
to what he will do after high school, but he has a dream of becoming a
doctor. Having had a complicated medical history, himself, he knows a
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little about human anatomy, and its importance. But Jason does not
know of anything he can do to move toward realizing this dream. If he
were to talk to his parents or teachers about it, they might have some
ideas about how to provide learning experiences for Jason that w ould
help him begin to define a plan for his future life. But it seems as if
there is no one who is working on a serious future plan with Jason. In
the meantime, Jason is biding his time at Greenwood. He especially likes
the field trips arranged by the special education department, and only
wishes that transportation were less of a problem, so that he could
participate more. The class recently went on a field trip to a professional
baseball game, but he was not able to go, because it ended at such a late
hour.
In this researcher’s view, an ideal future for Jason, would be one in
which Jason would begin to realize that he is in control of what happens
in his life. He would ask to be placed in a general education science
class that studies human anatomy. He could begin to learn for himself
whether the study of medicine is of real interest to him, and whether his
capabilities for work in that area match his interest. Jason would
experience inclusive education using as many of the support services and
aids he might need, such as the recording of class lecture material on
audiotape, and being allowed to take tests orally.
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School transportation schedules, in this ideal world, would be
arranged to allow for extracurricular activities on a twice-weekly basis, so
that students with disabilities could participate. Jason would then be
able to enhance his social life at school, by becoming a member of
MEChA. Jason could use his bilingual translation skills as part of the
MEChA organization, or perhaps as part of a community service class.
Improved transportation schedules would also allow Jason to attend
sports or cultural events at school from time to time.
The history class designed to support diversity would be of special
interest to Jason, because he is both a person of Hispanic descent and a
person with a disability. His point of view would be very valuable to
the other students.
In this ideal world, Jason would learn to use all of the aids and
supplements that the school system is legally required to provide for him,
so that he could become as good a student as he is able. With his interest
in people and in interpersonal communication, Jason could gain entrance
into college and study to become a school counselor or a psychologist.
Another possible work option for Jason would be to act as a bilingual
interpreter in a medical or educational setting.
Eventually, in an ideal world, Jason would learn to use all of the
resources available to people with disabilities, as an active member of his
local center for independent living. Jason’ s point of view would be
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valuable, especially, to people of ethnically diverse backgrounds, because
of his experiences learning to manage all of the resources in his
environment to provide himself with the kind of life he chooses.
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Narrative Number Three
"I like school, because I like my friends":
Coping in a Changing Social Environment
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The protagonist of this narrative is a young woman named Anne, a
student at Greenwood High School. One’s early impressions of Anne
depict a smiling, and friendly high school student, who, although slightly
shy at first, was willing to talk things over. Anne has recently turned 21
years old. Her birthday was a matter of much anticipation; her parent’s
took her out to dinner to celebrate.
In appearance, Anne does not stand out in a crowd of high school
students. She has short, slightly curly, light brown hair, which is
stylishly cut, and hazel eyes. She wears glasses some of the time, the
lenses slightly tinted, with wire frames enameled in subtle shades of pink
and blue. Her calm, relaxed demeanor is as easily noticed as the light
scattering of freckles on her fair complexion. Anne is petite in height,
and struggles, successfully, to manage her weight. She dresses like many
of the students, wearing woven or knit pants, a t-shirt, sweatshirt, or
blouse, and sneakers. A favorite outfit is a white sweatshirt with Mickey
Mouse pictured on the front, with red knit pants. During an average day
at school, Anne can be seen carrying her books in a nylon backpack
between classes. On a special occasion, Anne might be seen in a peach
colored dress, nylons, heels, and small gold earrings. With this outfit,
Anne would carry a purse.
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Anne was born with a developmental disability known as Down
Syndrome. When she was a child, her parents loved her very much, so
they took time and made many efforts to be with her, play with her, and
educate her as fully as was possible for Anne. Her mother taught her
how to read before Anne started school. The teachers at this school did
not believe that it was possible for a young child with this particular
disability to be able to read. But Anne’ s parents believed that Anne had
rights to a good quality education, so they persisted. Anne’s parents
continued to persist, even though they discovered that many people,
students, teachers, and school administrators did not want to deal with
their concerns about Anne’ s educational rights.
Anne attends Greenwood High School now. Her parents are still
working to make sure Anne’s educational rights are respected, and
carried out. Anne is a person who really enjoys being with others, and
participating in activities. She is enthusiastic about doing things. She
works hard at being a good student. Because her parents have
persistently fought for her educational rights, Anne has had many
experiences that, at one time, would never have been considered for a
person with a developmental disability. Anne has held a position on the
high school student council. While Anne spends part of her day in
special education classes, she has also had opportunities to be in classes
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at Greenwood High with regular students her own age and who live in
her neighborhood.
Anne has many friends in the special education program at
Greenwood. She enjoys talking with them and doing things together
with them. Once in a while, when they are not able to go to Vocational
Experience Class in the afternoon, a few of the special education classes
join together and watch movies. The students all enjoy this. Also, Anne
takes every opportunity to attend the field trips that are arranged by Mrs.
Walters and Mr. Benjamin and the other special education teachers. They
have gone shopping at the mall, attended a professional baseball game,
and visited a couple of amusement parks together. Anne and the other
students really enjoy these experiences. It gives the students
opportunities to spend time with each other outside of their classes, as
w ell as to learn about participation in their community. Anne is very
enthusiastic about being involved in such activities.
Last year, Anne was able to participate in the high school Choir.
This was a class that she attended every day, in which they practiced
singing songs and doing dance steps with the songs. Sometimes, Anne
had difficulty following along with the songs and dance steps. When
that happened, she would stand quietly and wait until the music became
familiar again, and then she would continue to participate. After many
weeks of practice, the Choir periodically gave performances at school
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concerts. Everyone in the school community was invited to attend these
concerts. Anne really enjoyed this opportunity to be a part of the Choir,
and perform at concerts with her family members in the audience. It
meant a lot to her.
However, Choir was not an easy class for Anne. Learning the new
songs took time and effort, and some of the dance steps were too difficult
for her to learn. Also, the other students in her class were not always
very helpful. The students in her class did not seem to mind having her
in their class, but, on the other hand, they were not friendly with her,
either; sometimes they would not talk to her. The students were very
involved in their own lives, and in talking to their own friends. They
just didn’t seem interested in making new friends. Anne was not
accustomed to this; she had always liked socializing with the other
students, especially during an activity that is as much fun as singing.
One day, before Winter Break, the Choir class had arranged to have
a Christmas celebration. They had brought Christmas cookies to share,
and all of the students were sitting together, talking, and enjoying the
sweets. Anne had made gifts for her teachers, in another class, and her
Choir teacher had seemed to really like the gift Anne had made for her.
But as they were having the Christmas celebration, Anne looked around
and noticed that none of the other students were being friendly with her;
it hurt her feelings and she began to cry. Ms. Lindbergh noticed that
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Anne was unhappy, and Anne asked her teacher why the other students
w ould not talk to her. Ms. Lindbergh seemed to sympathize with her
feelings, but did not know what to do to help.
In spite of some difficulty with making friends in the class, Anne
persevered with Choir; she really enjoyed the music. With the support of
her family, Anne participated in all of the concerts. She hopes that she
w ill be able to participate in Choir again at some future time.
This year at Greenwood, Anne has had many enjoyable experiences.
She has English and History class in a regular education classroom
during first and second period. Then she goes to her physical education
class. Then, in fourth period, Anne is a teacher’s aide in one of the
special education classes. She enjoys the feeling of being helpful to
others. After lunch, Anne has a Vocational Experience Class which takes
place at a jobsite off of the school campus. In Vocational Experience,
Anne and her classmates learn skills that can be used at a work setting.
These skills will, eventually, allow the students to be able to work for
pay. Anne hopes to be able to work at a restaurant like Taco Bell or
McDonald’s, in the future.
It happens that Anne’s first and second period classes take place in
the same classroom. Often, after first period is over, Anne goes over to
visit friends in one of the special education classrooms for a few minutes
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during the break between classes. Sometimes she is a little late getting
back to second period, but the teachers do not seem to mind very much.
Mr. Simon, her history teacher, sometimes teases the students about this.
One day, Mr. Simon came out into the hallway to close the classroom
door, as second period was beginning. Anne, along with a few of her
second period classmates, was approaching the door, and Mr. Simon saw
them coming. He began closing the door, as he announced to them that
they would all have to do an extra chapter for being late to class. The
students, including Anne, all at once raced to get in the door before Mr.
Simon closed it, so that they wouldn’t have to do the extra chapter. They
seemed to take his warning about being late seriously, even while
knowing that he was kidding around.
Anne’s history class is interesting. Mr. Simon and the other
teachers of the class designed the curriculum to support diversity. They
seek to enroll many different kinds of students to be in the class; those
with different cultural backgrounds, students who speak different
languages, students who can walk, those who use wheelchairs, students
with records of high academic achievement, students who need help with
studying, and students of different ethnic backgrounds. The teachers
designed this history class to encourage all students to share about their
experiences and what their experiences mean to them. This team-taught
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history class is very large, having 60 or more students. While the
atmosphere in the class seems active and boisterous, the students seem to
find the experience stimulating. Anne enjoys this class too. Although
she finds the classwork is sometimes difficult, Anne thinks this class is
relaxing and fun. When the class work is difficult for her, Anne just does
as much of it as she is able to do. Overall, she likes her history class, and
she especially likes being able to share her experiences with the class.
Anne had a really enjoyable experience this spring at a weekend
camping event she attended with other young people with disabilities.
These were people from outside of Anne’s neighborhood; people came
from many communities to be at this weekend campout. Anne enjoyed
the weekend so much, that she could hardly wait to tell her friends at
school about it. Anne took the opportunity to share this weekend
campout experience with her history class. She brought in an 8x10
photograph of the entire group of, approximately, 80 people who
participated in the event that weekend, talked to the class about the
event, and passed the photo around for her classmates to view. Anne’s
sharing was well received; the teachers and the other students in history
demonstrated their support of Anne’ s willingness to share her experience.
Anne had had such a good time that weekend, that she talked about little
else for a few days.
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This spring, the students in Anne’ s history class were assigned a
special project. The students were to bring in an audiotape of a song that
they especially liked, to play for the class, and to be prepared to share
with the class what the song meant to them. Although many of the
words in the songs were difficult to make out, the assignment seemed to
have significance for the students; some of the subject matter included
teenage pregnancy, the importance of family, and the generation gap.
Anne enjoyed the class that day, although she was not sure why.
Anne has physical education during third period. She enjoys
playing games and sports in her physical education class. The class has
about 15 students, and Anne knows all of their names. A good friend of
Anne’ s is in this class; his name is John. Some of the student’s in this
class get in trouble for misbehaving in class; sometimes they talk out of
turn, or are uncooperative about carrying out the assigned work. But
Anne does not let their behavior effect hers. She works hard at doing the
exercises and playing the sport or game that the teacher has assigned,
and she enjoys doing so in this class. Even the students who do not
always behave in class seem to enjoy the sports and games.
One day this spring, the class was playing horseshoes. The teacher
had explained the rules of playing and scoring the game to them before
the game started. Although the rules were complicated and few of the
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students knew them well at the beginning, everyone played and seemed
to be having a good time. Anne had played this game before. She
volunteered to be on a team with two other girls.
One of these girls, whose name was Helen, was a student who
sometimes misbehaves in class. Helen seemed to be a person who liked
to tease others, and it was not always clear whether she was teasing to be
humorous, or teasing to be unkind. Her manner at times was slightly
aggressive, or pushy. Helen seemed to be a person who would test
others to see how far she could push them.
The three girls, Anne, Helen, and their classmate, began playing the
game. They soon learned how to tell each of their horseshoes apart when
it came time to score. They took turns being first to throw the shoes, as
the rules of the game suggest. They did fairly well, and seemed to enjoy
the game.
Helen said she was feeling too tired to walk over to pick up her
horseshoe, because she had thrown it too far. She asked Anne to do it
for her. Anne, a person who likes the feeling of being helpful to others,
said no to this request of Helen’s. Anne told Helen that it was her
horseshoe, and that she should pick it up. She seemed to realize Helen's
tendency to be ‘pushy’ with others, and, assertively, told Helen to take
care of her own responsibilities. Helen did so. Later in the game, Helen
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again tried being ‘pushy’ with Anne. Helen had been first to throw her
shoe in this round. Helen’s shoe came very close to the post, and this
w ould score one point, as long as none of the other players hit her shoe
with their’s and knocked it out of range. Helen laughed a little, saying to
Anne, “ If you knock [my horseshoe] out, I’m gonna ‘get’ you, Anne!”
Anne just laughed at this. She was good at this game and she continued
to play as well as she could. Anne threw one of her shoes and it landed
standing up on end against the post. Anne, Helen, and their classmate,
all laughed at this, and asked the teacher how to score it, because this
was not in the rules that they had learned.
Anne likes being at school because she likes doing things with her
friends. She notices that people at school sometimes tease. She knows
that teasing is sometimes fun, but that it can sometimes be mean and hurt
people’s feelings. She has had the experience of getting her feelings hurt
by someone who was teasing, and so she is careful about teasing others.
One day in P.E., some of the students were teasing Anne’s friend John
and Helen about how they ‘liked’ each other, hinting that maybe they
should be boyfriend and girlfriend. Many of the students in Anne’s P.E.
class found this to be funny and they joked around about it for awhile.
Even the teacher called John ‘Romeo.’ Anne smiled, but she w asn’t sure
that this was a kind thing to be joking around about. She didn’t join in
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with this teasing, because John is a good friend of hers, and she thought
it might hurt his feelings, even though John wasn’t allowing his feelings
to show.
Anne has known John for a while, and she values his friendship.
One day this spring, when Anne and John were in their fourth period
class, Anne became concerned that John was upset with her for some
reason. After class, Anne made a point of seeking John out, to apologize.
She wanted to make sure that he was not upset with her, so Anne asked
John to shake hands, and be friends again. John agreed to this, and was
glad to join Anne when she asked him to come sit at the table with her
and their friends at lunch that day. Anne has another friend at school
named Caren. She has known Caren for a long time; she and Caren
shared the same elementary school. Also, Anne and Caren attended a
special school for students with disabilities together when they were
younger. Anne and Caren used to spend time talking and doing things
together. However, during the last year or so, Caren began dating a boy
that she especially liked, and the two of them began a serious
relationship. Since Caren spends more time with her boyfriend, now, she
has less time to spend with Anne, and so Anne and Caren aren’t able to
do as much together anymore, although they still see each other at
school. Anne finds that dating boys is just not of interest to her, yet.
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Following her graduation from Greenwood next year, Anne plans
to work part time. She hopes to find a job as a restaurant worker. Since
she has had some experience working in the school cafeteria, as w ell as
other work experiences through school, this is probably an achievable
goal. Anne has had some experience with using a public bus
independently and is getting better at it, so transportation is not a
problem for her. Also, she is considering attending a local community
college, after graduation. However, some of the independent living skills
classes that are offered for students with disabilities, may be a little too
easy for her, since Anne already has many of those skills. So, her classes
at community college will have to be chosen carefully.
Any of these settings that Anne might choose after high school w ill
be a new opportunity for her to participate in activities with her friends.
Being as enthusiastic, friendly, and willing to participate as she is, it is a
safe bet that she will find more enjoyable experiences in the future.
In this researcher’s view, Anne does not seem to require an ideal
world in order to make her life work. With the guidance and advocacy
of her parents, she is already beginning to create a plan for her future life
in which she will be a productive person, working part time and going to
community college. In that future life, Anne will continue to seek out
and make use of opportunities to participate in activities she enjoys with
family and friends. When the time comes for Anne to decide about
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living independently of her parents, her choices will be informed choices,
and they w ill be carefully made in her interests. To envision an ideal
world for Anne, is to envision a community in which people with
disabilities are valued and accepted as the individuals they are, with
their own personalities, feelings, and capabilities.
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CONCLUSION
This chapter presented the data for each of the participants in the
form of emplotted narratives. These narratives were formed using the
method of narrative analysis as described by Polkinghorne (1995), and
were based on qualitative data collected via researcher collaboration with
each of the participants. The emplotted narratives presented here, seek to
describe the coping strategies of each participant according to the
individual meanings assigned to them by the students within their life
contexts at high school. In addition to the narratives presented here, a
visual representation of the sources of challenge experienced and the
coping strategies used by each of the participants is presented in the
following chapter. (See Figures 1 through 6 on pages 167-182).
The following chapter presents a summary of this study and a
discussion of the collected data in relation to important issues raised by
researchers on coping, adolescence, and educational integration, or
inclusion within the general education high school context. Specifically, a
discussion of each of the student’ s coping styles and reported or observed
sources of challenge is presented in relation to a definition of adaptation.
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CHAPTER V
SUMMARY A N D DISCUSSION
This chapter presents a summary of this study and a discussion of
the issues found to be of significance in relation to the data gathered.
The discussion considers both the context for coping and the individual
students’ coping styles. These are discussed utilizing an occupational
science view (Frank, in press) of adaptation. Issues related to the process
of inclusion, and the provision of challenge within the high school
context are addressed. Portraits of the individual coping styles of each of
the participants are presented, and a view of this researcher’s reflections
during the study’ s progression is provided. Applications for occupational
therapy useful in helping adolescents with disabilities to learn and use
adaptive coping strategies are reviewed, followed by suggestions for
future research, and a final summary and conclusion. It is important to
note that the results of this qualitative study should be used “ to provide
the reader insight and understanding” (Polkinghorne, 1995, p. 221) about
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the individual participants, and are not meant to be useful in
generalization to a larger population.
For the purposes of this study, coping was defined as the effort
exerted to maintain one’s physiological, emotional, cognitive, and/or
psychosocial balance in the face of threat or challenge (Monat & Lazarus,
1991). The presence of a coping behavior or process, according to this
definition, implies that threat or challenge is present. The mainstream
high school was defined in this study as the context in which sources of
challenge or threat might be found. The process of educational
integration, issues related to the stigmatization of persons with
disabilities, and issues related to the developmental tasks of adolescence,
were thought to be possible sources of challenge or threat for students
w ith disabilities within this context. This study, through the collection
and analysis of qualitative data, hoped to uncover adaptive coping
strategies and environmental supports to adaptive coping for students
with disabilities in this setting.
In this discussion, it w ill be useful to view coping as a strategy of
adaptation as it is understood from an occupational science perspective
(Frank, in press). From this perspective, Frank (in press) defines
adaptation as “ a process of selecting and organizing activities (or
occupations) to improve life opportunities and enhance quality of life
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according to the experience of individuals or groups in an ever-changing
environment ” (p. 263-264). She goes on to define adaptive responses or
strategies as being “ nested within” (p. 264) adaptive systems. Adaptive
strategies “ are sequences or chunks of action [used] to improve life
opportunities or enhance quality of life, often becoming part of a
repertoire or style” (Frank, in press, p. 264). This definition can be said
to overlap with the definition of coping used in this study. The principal
difference is that Frank’s definition focuses on external sources of
challenge, meaningful activity or occupation, while coping, as defined for
this study, dealt with challenges from within the person, as w ell as
challenges found in the external environment. To make use of Frank’s (in
press) definition of adaptive strategies, it will be questioned whether the
participants in this study could be described as coping with challenges in
a w ay that improved their life opportunities or enhanced their quality of
life. In addition, the importance of the high school context, and how it
can influence the developmental process for its students w ill be
considered.
H ow can the context influence a student to make use of the high
school years to “improve life opportunities or enhance quality of life”
(Frank, in press, p. 264) ? First, one must consider the long term goals,
or the meaning of the high school years, for this age group: the
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developmental tasks of adolescence. Students at this age are working to
build their academic and social skills to prepare themselves for
productive adult work roles. For some students, these years are a
prelude to entrance into institutions of higher learning, while for others,
these years have a more vocational focus. Whatever path the student
may choose to take, the general goal during this time is to gain
knowledge, and learn skills which will support independent, responsible
adult citizenship in the career or vocation of the student’s choice. These,
along with physical and emotional maturation, are the long term goals of
this developmental period.
The avenue presented by the high school to help meet these goals is
through the provision of a carefully structured and appropriately
sequenced curriculum of academic and social challenge. Part of the
process of providing an optimal level of challenge for students with
disabilities is through appropriate placement along a continuum of
placement options which occurs via the IEP. The context has much
influence over these educational processes, for students with and without
disabilities. Administrators, teachers, and counselors have much control
over the design of high school curriculums. Through curriculum design,
they can influence the quality and quantity of academic and social
content and structure. In addition, administrative policy, working with
teacher and parental input, has influence over placement of students into
the appropriate classes. However, to meet educational goals, high school
systems must also have the interest, support, and cooperation of the
parents of these young people. School systems, also, are compelled to
work within existing financial constraints.
The following sections discuss concerns about how the process of
inclusive educational placements seemed to occur for the study’ s
participants within this high school context, as well as concerns about the
structure and quality of challenges experienced by this study’s
participants. A portrait of the coping styles of each of the participants is
then presented, followed by a view of the reflections of the researcher as
the study progressed.
Who Gets Included in General Education?:
Strong Parental Advocacy and ‘ Squeaky W heels’
The high school context, while serving to educate adolescents, is
also a primary means of general socialization for them (Kimmel &
Weiner, 1995; Busch-Rossnagel & Vance, 1982; Conger, 1973). For this
reason, learning to cope within the high school context is an important
part of adolescent development; a prerequisite to coping within adult
social environments. The issues of educational integration into a
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mainstream context, can make the process of socialization especially
difficult for adolescents with disabilities.
As noted by Hasazi et al. (1994) and others (Sawyer et al., 1994;
Danielson & Bellamy, 1989), the process of educational integration or
inclusion, is occurring at different rates within different regions in the
United States. At Greenwood High School, the plan for inclusion of
students with disabilities must be described as conservative, that is,
tending to believe in “the importance of both maintaining and expanding
options within the special education system” (Hasazi et al., 1994, p. 505),
in terms of its implementation of least restrictive environment (LRE).
This study found that, in this context, the students with physical and
developmental disabilities who were interviewed, seemed to experience
inclusion as a consequence of either parental advocacy, as in Anne’s case,
or student assertiveness, as in Scott’s case.
Anne’s story was an example of the advantages of consistent
parental advocacy. Her academic program was well-balanced, with two
hours of general education placement, two hours of special education
placement, and two hours of off-campus vocational work experience
class. This is the result of intensive advocacy on the part of her parents
w ho understand the system and the educational rights of persons with
disabilities.
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Jason’s parents, having not yet been present at either of his IEP
meetings at Greenwood, are presently foregoing their role as advocate,
and this may account for the failure of his academic program to include
him in general education. In addition, Jason’s propensity for passive
cooperation decreases the probability of his becoming “ the w heel that
squeaks” ; the analogy used on separate occasions by two of his teachers
to describe w hy some students experienced general education placements
w hen others did not.
Scott’s story was quite different in this regard. While Scott’s foster
parents were moderately informed about the details of Scott’s IEP, they
noted that at times, the goals were not carried out, and that some of the
goals seemed beyond Scott’s ability to achieve. The role taken here
appears to be that of monitor of Scott’ s educational progress, rather than
that of advocate. Scott’ s somewhat random experiences of general
education placement may reflect the quality of his foster parent’s
involvement. Yet, Scott’ s occasional emotional venting, and urge to
communicate with others in the school setting have been noticeable
enough to demand the attention of his teachers, thus establishing him as
a ‘squeaky w heel.’
To summarize this phenomenon, it seemed that either the student’s
parent must act as advocate, insisting on inclusive placement experiences
159
for the student, or the student must become "the wheel that squeaks” ,
gaining the attention of his teachers or other educational authorities, in
some way, e.g. as with Scott’s mild behavioral difficulties, in order to
attain a program of study that is more inclusive.
Biding Time or Experiencing Challenge?
Another area of concern in regard to the context for coping, was the
low level of challenge reported by one of this study’s participants, while
placed in a separate special education classroom. Coping, as it is defined
for this study, can only have meaning within a context which provides
challenge. Legally, the school is required to place the student in the least
restrictive environment, an attempt to provide the student with a balance
of challenge that is appropriate to his or her needs and capabilities (Yell,
1995). This study found that the separate special education environment
in at least one case was not meeting this requirement. Jason, who spoke
both English and Spanish, an example of whose spoken vocabulary may
be viewed in Appendix G, and who understood w hy he must take
responsibility for asking for help, was consistently unable to name any
content or activity at school that he found to be difficult. The only
exception to this was that he found navigating the cafeteria line in his
wheelchair to be difficult. Jason did report finding “ waiting around to
160
ask for help” and shredding paper to be boring, but was unwilling to let
his teachers know, out of concern for their feelings. This student’s
everyday experience in this context seems to be one of biding time, with
very little exposure to content that held challenge for him. One has the
feeling that because he is physically challenged, the social context acts as
if it w ould be unkind and unfair to present him with additional academic
or social challenge. Such a protective attitude results in boredom and
isolation for a student in this situation.
While the IEP exists for the purpose of designing an educational
program to fit the individual capabilities and needs of the student with a
disability, for the student who remains in the separate special education
classroom, the IEP is no guarantee of prevention against low levels of
environmental press (Barker & Wright, 1971). Efforts to determine the
efficacy of placing students with moderate to severe disabilities into
general education classrooms, are being made by Hunt and Farron-Davis
(1992) and others (Hunt, Farron-Davis, Beckstead, Curtis, & Goetz, 1994).
These researchers are studying the comparative quality of curricular
content and IEP design for students with disabilities placed in special
versus general education settings. The quality of curricular content in
special education has continued to be an area of concern providing
impetus to the movement toward inclusive education (Lipsky & Gartner,
161
1989; Sailor et al., 1989). In this particular context, however, because of
class size (approximately 25 students) and the varying levels of
individual student capabilities and needs within the class, the amount of
academic challenge and environmental press appeared to remain,
purposefully, at low levels. This is one of the arguments suggesting that
the use of a more restrictive placement along the continuum should be
available only if it is needed (Sailor et al., 1989). Perhaps school systems
should be provided with some incentives to promote less restrictive
placements when
they are appropriate.
Figures 1 Through 6
Before presenting the individual student portraits of coping, it
seems important to provide a brief explanation of Figures 1 through 6,
which provide a visual image descriptive of the coping strategies used
and the sources of challenge reported by each of the students. These
figures are intended to visually illustrate the character and w eight of the
data collected within each category, whether coping strategy, or source of
challenge, for each of the students. These figures were derived from the
coded data. This process is delineated in Chapter III.
The coping strategies listed in Figures 1, 3, and 5, represent
strategies reported or observed to have been used by the individual
students as they went about their daily tasks at school. The terms used
162
to characterize sources of challenge in Figures 2, 4, and 6 represent the
individual student’s description of how a particular challenge was
experienced by the student. Field trips are an example of experiences
typically described as 'fun’ or 'enjoyable’ , and the anticipation of
planning for a field trip reportedly elicited feelings of 'excitement’ or
'gladness’ (See Appendices F, G, and H for individual examples of
strategies used and sources of challenge experienced). Positive
descriptors and feelings such as these may be viewed as representing an
experience of an optimal level of challenge as it is understood by
Csikszentmihalyi (1984, 1990) in which an individual’s level of skill and
level of challenge during activity are perceived to be in balance. The
experiences descriptive of optimal challenge are portrayed at the tops of
Figures 2, 4, and 6.
Experiences and feelings of challenge of a more neutral nature, such
as academic challenge, boredom, or barriers of architectural or
administrative origin, are presented in the middle area of the figures.
These terms describe challenges the students reported experiencing, or
which the students were observed to experience, either by the researcher,
or by a participating teacher. It should be noted that all reported sources
of challenge represent the subjective experiences of individual students
163
within their own life contexts and should not be considered as objective
measures for comparison between the students.
Toward the bottom of the figures, the terms describe challenges that
may perhaps, be viewed as the negative aspect of challenge, that is, as
threat. The less enjoyable emotions, reported and coded as sources of
challenge, such as anger, fear, and sadness are described here. Again,
these figures are intended to provide a visual illustration of the character
and w eight of the coping strategies and the sources of challenge reported
or observed to be in use by the students during this study’s process of
data collection. See Appendix J for definitions of terms used in Figures 1
through 6.
Portraits of Coping
Each of the participants used coping strategies in meaningful ways
within their specific life contexts. Scott communicated persistently with
others, confronted responsible persons, and used denial to cope with
some of his emotions. Jason sought out humor as a way of coping with
boredom, and used passive cooperation when challenged by potential
conflict. Anne confronted responsible persons, took direct action, and
asked for help when faced with challenge. The following sections
portray how the students used these strategies within their situations and
164
discuss the extent to which their coping styles seemed to improve or
maximize their life opportunities as high school students.
Scott
Scott, with neurological impairment of his oral-lingual musculature,
was a person who worked daily and with persistence at communicating
his needs, wants, ideas, and feelings to others. When he was able to do
so, successfully, it was an important source of personal satisfaction for
him, as well as a source of positive reinforcement from others, who, it
was often observed, encouraged him in these efforts. Yet, as he
approaches adulthood, he must learn to use his efforts at communicating
with others within the limits of social restraint that is appropriate to the
particular context. The paradoxical nature of this challenge makes it a
particularly difficult one for him (Refer to Figures 1 and 2 on pages 167-
168). Having to cope with feelings of frustration at the difficulty of
making himself understood was observed to be a struggle in itself. The
encouragement of people within the high school context was easily
observed, and yet within this context of encouragement, he was required
by his teachers to make progress in learning social restraint, before he
could be appropriately placed in further vocational training. While this
requirement represents a realistic view, his difficulty in struggling to
comply with it is understandable.
165
Scott’ s opportunities for general education placement seemed to be
somewhat random, and appeared to be related to his naturally outgoing
personality, his confidence in using his wheelchair to gain access, and his
mild behavioral difficulties which gained the attention of his teachers and
other educational authorities.
Scott and his teachers reported that he was “ getting into trouble” for
talking at inappropriate times, for “ talking back” to his teachers, and for
occasionally venting anger. While he reported struggling to cope by
working on these behaviors, he was also observed to be continuing to use
them. Scott’s difficulty with expressing his thoughts and feelings about
his general life situation might be contributing factors in his occasional
emotional venting and mild behavioral difficulties.
An additional concern may be that the special education
environment did not consistently demand appropriate behavior, or hold
Scott accountable for his behavior. Thus, the environmental demand,
appropriate social restraint, is unpredictable for Scott. H ow can he learn
to cope with a challenge whose characteristics are variable? Sometimes,
talking out of turn, his reported behavioral challenge, was
“ inappropriate” , but sometimes it was tolerated as part of the normal
special education environment. He continued to gain positive
reinforcement for talking out of turn, because such student behavior was
166
Typically
Fun
Enjoyment
Easy
Gladness
Excitement
Boring
Academic
Psychosocial
Neurological
Architectural
Transportation
Administrative
Physical
Behavioral
Fear
Sadness
Anger
0 1 2 3 4 5 6 7
Never Rarely Sometimes Often Typically
Figure 2. Scott's Sources of Challenge
typical in the relaxed special education environment. Again, because
student needs and capabilities vary so much within the separate special
education classroom, levels of environmental press (Barker & Wright,
1971) remained purposefully low.
In relation to Scott’s behavioral goals, it seemed that Scott was
coping within an environment of inconsistent reward or feedback.
Although specific behavioral improvements were required of him as a
contingency for vocational experience placement, his efforts toward
improvement were not consistently monitored, and the vocational
experience placement efforts were not made according to the contingency
plan. Rather, his asking for placement provided the impetus in this
direction. His behavioral goals became meaningless within a system of
inconsistent demand and feedback.
Scott used some emotion-focused coping strategies, notably denial,
in stating that he did not care about the challenges in his life. He relied
more typically, however, on problem-focused coping strategies, such as
persistence with verbalization, and seeking out and negotiating with
responsible persons, to solve problems.
While progressing in all of the developmental tasks of adolescence
(See Appendix F), lags in Scott’ s development compared to his non
disabled peers, may be observed in the area of definition and planning of
169
vocational goals. As a result of delayed capacity or opportunity to
assume the worker role, Scott may be experiencing extended economic
dependency on his family, contributing to a lengthened period of
adolescence. This situation is common in students with disabilities (Park,
1975; Wright, 1983). While Scott is demonstrating progress toward
attainment of intimacy with opposite sex peers, he is perhaps making
slower progress than that of his non-disabled age mates. Mobility
problems, an example noted by some researchers (Asch, 1989; Strax &
Wolfson, 1984; Park, 1975), may also be effecting Scott’s rate of
progression toward completion of his developmental tasks. While
transportation difficulties were reported by Scott on only one occasion,
training in using the public bus, independently, would be useful to Scott
in his efforts to take on the worker role, and in interaction with both
same sex and opposite sex peers. Improved transportation would also
afford him more opportunities to participate in general education
extracurricular activities.
Scott, having just turned 21 years of age, seemed especially to be
struggling with attaining a measure of adult independence for himself.
His interest in vocational experience was evident from almost the first
interview. The classes he participated in this spring, that were more
vocationally focused, seemed to hold more interest and have more
meaning for him, as well. Although his knowledge of the vocational
170
world was limited, opportunity for exploration in this area w ould help
Scott to define his goals. Scott’ s interest in gaining a sense of adult
independence is, perhaps, undermined by his foster parents tendency to
view his life situation in terms of its limitations rather than its possible
potentials (Wright, 1980).
Was Scott’s style of coping with challenges one that might improve
or maximize his life opportunities as a high school student? Although
coping in an environment of inconsistent demand and reward, Scott
demonstrated persistence in making himself understood, and in being
willing to interact with a large segment of his social environment, even
though this was a difficult challenge for him. His persistence and
willingness to make use of the social environment are sources of
improved quality of life for him in this context. They are also traits that
w ill serve him in the future, especially as he refines their use, as is
suggested in the goal of appropriate restraint. His willingness to seek
out responsible persons and ask for help as coping strategies, also serve
to improve his life within this context.
However, an area of concern for Scott, may be that in his persistent
efforts at interpersonal communication, he may neglect other aspects of
his potential. He may be at risk for imbalance, as he tends to emphasize
the importance of thought and verbal skills, to the detriment of his
171
“ doing” self. The importance of "performing, producing, or causing” (p.
8) actions, in addition to using verbal skill, is noted by Fidler and Fidler
(1978). Emphasis on verbal skill, to the detriment of Scott’s performance
skills, w ill diminish his life opportunities, as a student in this setting and
in the future.
Scott’s use of denial, while helping him to cope with his emotions,
is potentially a source of confusion to others in his environment,
however, and if misunderstood, may act to diminish his life opportunities
as a young adult in a school setting. When Scott states that he does not
care about seeing old friends or experiencing a job placement, people w ill
often believe that he is stating his true feelings, and act accordingly.
Perhaps, most importantly, Scott cannot afford to continue to allow
his future plans to be dictated by the inconsistent context in which he is
currently working. Without an advocate, or an accurate understanding of
his educational rights, Scott’s vocational goals and his future as a
working adult will continue to be very indefinite, and may be at risk for
capitulation, if he becomes discouraged in these efforts.
Tason
Jason, the youngest of the participants at 17, still has a few years of
high school ahead of him to define his plans for the future. While
studying to become a doctor is probably not a realistic goal for him, his
172
interest in science and anatomy might provide him with academic
challenge in the interim, if he makes this interest known (Refer to Figures
3 and 4 on pages 174-175; See Appendix G). Jason’s propensity to
cooperate, even to his own detriment, was marked. Jason’s ability to
speak both English and Spanish might be another source of both
academic and social challenge. The provision of bilingual translation
skills could be applied to a variety of community service uses.
Two of Jason’s teachers agreed that the absence of parental
involvem ent and Jason’s cooperative attitude contributed to the lack of
impetus for Jason to be placed in general education classes. His lack of
knowledge about his options, and about the nature of a higher level of
academic challenge are part of what allow him to remain passive about
school choices. He expressed some concern about making inappropriate
choices in signing up for classes, believing that his parents and teachers
knew best. While he described the paper shredding activity as boring, he
was adamant that he could not hurt his teachers feelings by telling them
of his boredom. Thus, Jason’s appraisal of the situation led him to a
passive response. In asking the questions ‘What is at stake for me in this
coping transaction, and what are my coping options?’, Jason decided that
staying with the status quo was the most acceptable solution to the
challenge of boredom. In his view, if he were to tell them of his
173
174
Persists
Takes Direct A ction
Confronts Resp. Person
Seeks Soc. Support
A sks for H elp
U ses Humor
U ses Appr. Restraint
Follow s Rules
Seeks Spir. Support
Ignores
U ses D enial
W ithdraw s/Isolates
Rem ains Passive
V ents Em otion
' -
W M m r n m m
o
Never Rarely Sometimes Often Typically
Figure 3. Jason's Coping Strategies
Fun
Enjoyment
Easy
Excitement
Boring
Academic
Architectural
Transportation"
Administrative
Physical
Fear
Sadness
0 2 1 3 4 5 7 6
Never Rarely Sometimes Often Typically
Figure 4. Jason's Sources of Challenge
boredom, the feelings and good will of his teachers’ were at stake, and
for him, the stakes were too high. It was preferable to remain bored than
to risk the hurt feelings and perhaps, annoyance of his teachers at having
to work out a new goal for him.
The absence of anything that Jason could describe as “difficult” ,
seemed to mean either that Jason knew of nothing that was a challenge
for him, or that he did not like to discuss difficult items. His answers
about challenge in this area demonstrated a wish to cooperate and come
up with an answer, but he could not: “ Honestly, nothing.” The
following quote demonstrates Jason making an effort to please the
researcher by coming up with some interesting data for the case study:
“ And like I told you, I’m going to [local amusement park] and to [local
water recreation park] . . . mmhmm, busy, busy, busy. I don’t know how
I’m going to get there, but I’m going to get there.”
While Jason could occasionally be observed to be experiencing
physical challenges, such as fatigue, and skin irritation due to healing
scar tissue, he was also often alert, interested, and willing to interact and
find humor in his environment. The vocabulary list of 13 words shown
in Appendix G of this document provides an example of the
sophisticated verbal capabilities of this academically underchallenged
student. In addition, his efforts to find the humor in his life situations
176
can be view ed as a coping strategy; he was actively seeking the comical
aspect of situations as a way of coping with boredom, or the absence of
challenge.
Jason would probably experience more psychosocial challenge upon
general education placement and would benefit from a carefully
structured balance between general and special education placement as is
suggested by Weisel (1988) and others (Lord et al., 1990). His interaction
with other students of Hispanic background seems a possible basis of
social support for him, in addition to that of his peers in special
education. The history class at “ Greenwood” , the curriculum of which is
designed to support diversity, might be a worthwhile experience for
Jason, considering that he has both ethnic and physically diverse
characteristics.
Jason reported difficulty with transportation as a barrier to
participation in both special education and general education activities, as
is noted by some researchers (Asch, 1989; Strax & Wolfson, 1975; Park,
1975), to be a contributor to a lengthened period required to complete the
developmental tasks of adolescence. While Jason is progressing in all of
the developmental tasks of adolescence, it is observable that he is lagging
behind what would be considered the norm for his non-disabled peers.
Lack of definition of vocational goals, and slow progress in attaining
intimacy with the opposite sex may be considered such areas of delay for
177
Jason. A strength in the area of good interaction with his peers, might be
in his favor, yet it may be difficult for Jason to find true peers, since
many of the students with disabilities function at an intellectual level
below his, and since he has not, as yet, had much interaction with the
general education environment. It seemed that much of his interactions
within special education were with adults, that is teachers, and teacher’s
aides.
While his parent demonstrated realistic knowledge of what w ould
be required for Jason to use a public bus independently, she expressed
serious reservations about allowing Jason to do so, either now, or in the
future. Although understandable, such protective concern could result in
isolation for Jason, as is noted by some researchers (Strax & Wolfson,
1985; Asch, 1989).
Jason, as did the other participants, genuinely enjoyed the field
trips to shopping malls, amusement parks, and the “ Special Games”
event, that were arranged by the special education department at
"Greenwood.” These outings provide valuable experiences in consumer
education, money handling and management, and decision making
within a general public context. Greater involvement of the general
education students on outings such as these, might be a w ay to
encourage contact between heterogeneous groups.
178
Can Jason’ s choice of coping strategies be described as maximizing
his life opportunities as a student in his high school years? Generally,
they cannot. While he demonstrated beginning awareness of the
importance of asking for help and confrontation of responsible persons,
he more consistently used passive cooperation as his choice w hen faced
with important challenges, such as those related to his IEP goals. Jason’s
active seeking of humor in his environment as a way of coping with
boredom, does add to his quality of life in this context, however. If, in
the long term, this pattern of coping through passive cooperation is not
interrupted, he may continue to lead a protected life of boredom and
isolation.
Anne
Anne’s situation within the mainstream high school context would,
perhaps, represent an ideal, in that she is experiencing a careful balance
of placement between special and general education environments. With
two hours of general education classes, two hours of special education
classes, and two hours of vocational experience classes, she is in a
position to experience challenge (Refer to Figures 5 and 6 on pages 181-
182), but with plenty of contact with her peers in special education to
provide social support (See Appendix H). In addition, the academic
content in special education provides her with an appropriate level of
179
intellectual challenge. This balance of educational challenge is, in part,
due to the quality of parental involvement demonstrated by Anne’ s
parents. It seems clear that Anne’s parents, who act as advocates for her
educational rights, are very aware of and involved in her academic,
vocational, and social development.
While Anne has experienced general education placement in the
past with some success, it has not always been so. She has also
experienced some difficulty in the area of social interaction with her non
disabled peers, as evidenced by a “burst into tears” observed by her
Choir teacher. Anne, who states, “ I like school, because I like my
friends” , was accustomed to enjoying social interaction as part of activity.
Her experience in Choir, with which she persisted to completion, was
observed by her teacher to be one of “ toleration” by the other students,
w ho tended to be involved and concerned with their own affairs and
friends.
To observe Anne’s experience this year would seem to demonstrate
that she is coping more effectively with social interaction within the
general education environment. While experiencing occasional isolation
in her history class, she was also observed to initiate interactions with
non-disabled peers and to initiate sharing her personal experiences with
the class as a whole. Anne’s willingness to initiate interaction with her
180
Persists
Takes Direct Action
Confronts Resp. Person
Seeks Soc. Support
Asks for Help
Uses Humor
Uses Appr. Restraint
Follows Rules
Seeks Spir. Support
Ignores
Uses Denial
Withdraws / Isolates
Remains Passive
Vents Emotion
0 1 2 3 4 5 6 7
Never Rarely Sometimes Often Typically
Figure 5. Anne's Coping Strategies
Fun
Enjoyment
Easy
Gladness
Excitement
Boring
Academic
Psychosocial
Administrative
Confusion
Sadness
7 3 5 6 1 2 4 0
Never Rarely Sometimes Often Typically
Figure 6. Anne's Sources of Challenge
non-disabled peers within the general education classroom setting, can
be view ed as a problem-focused coping strategy. Having experienced
problems with social interaction in a general education context in the
past, she now takes action to deal with this problem, by taking the
initiative to begin social interaction, herself.
This team taught history class of more than 60 students, has a
curriculum designed to “ support diversity” and encourage the sharing of
personal meaning among diverse groups of students. Anne reported
liking the class, generally, although finding some of the academic content
difficult.
Anne also demonstrated a tendency to cope by following specific
rules. For example, she adhered very closely to schedule constraints,
especially bus schedules, and she routinely copied information from the
blackboard, in both regular and special education environments, as an
academic responsibility, whether or not it was assigned. Yet Anne also
demonstrated the use of experiential knowledge (Sternberg, 1985;
Sternberg & Wagner, 1986), in her ability to spontaneously take note of
and interpret social cues. For example, she was able to anticipate that the
presence of the researcher, outside of the normally scheduled time, meant
that a schedule change was imminent.
Anne also often coped by asking for help within the high school
environment. If she needed information, or guidance, her teachers,
183
teacher’s aides, and peers, both with and without disabilities, were
resources for her.
While Anne demonstrated progress in each of the developmental
tasks of adolescence, her progress may be considered to be behind that of
her non-disabled peers in some areas. Anne's plans for the future
included hopes to work part-time in a fast food restaurant, and attend
community college, following high school graduation. While her
progress in the definition and planning of vocational goals must be
considered very good, she may be experiencing some extended economic
dependency on the family due to delayed capacity or opportunity to
assume the worker role (Park, 1975; Wright, 1983). Also, Anne
demonstrated remarkable strengths in the area of social interaction with
her peers, using a supporting value structure that guided her choices and
actions in initiation and maintenance of friendship (Kielhofner, 1985). It
was easily observed that Anne, trusting in her parents’ support, believes
in herself as a person with rights.
While her parents discussed their philosophical struggle with the
long-term implications of relationships, marriage, family, and child-
rearing for persons with Down Syndrome, Anne reported feeling no
particular interest in relationships with the opposite sex, at this time.
184
This might be considered evidence of a delay in the area of attainment of
intimacy with opposite sex peers.
Anne’s choices of coping strategies can be described as maximizing
her life opportunities as a student in high school. Anne worked daily at
dealing with as much academic content as she was able to at school. If
content became more than she could comprehend, she would occasionally
withdraw her participation briefly, but then continue on to participate in
activities as w ell as she was able. Anne also participated in the social
environment at school, experiencing different levels of challenge between
special education and general education. When social issues became
overwhelming, Anne withdrew her efforts briefly, but continued to be
present, and participate with good effort in activities. In summary, Anne
demonstrated primary use of adaptive coping strategies, and her habits
of adaptive coping were becoming a generally adaptive style of coping
(Frank, in press). The variety and quality of her high school experiences
reflected this adaptive coping style. One can envision a future for her
that w ill continue to include good quality and variety of life experience.
Reflections of the Researcher
Qualitative methods of research, unlike positivist methods of
inquiry, are expected to be value bound, rather than value free (Lincoln
185
& Guba, 1985). Efforts to address the values involvement or bias of the
researcher have been made in this study, including the transcription of
the researcher’s ongoing reflections during data collection, and peer
review of the researcher’ s field notes. This section w ill attempt to
summarize the researcher’s personal reflections during the research
process of this study.
Before entering the context, I thought it seemed a matter of good
balance for students with disabilities to experience both a mainstream or
general education environment, and a special education environment,
because this w ould reflect the “ real world.” Yet, I found m yself favoring
a higher level of inclusion, hoping that students with disabilities would
receive many opportunities to experience the mainstream environment.
This seemed a matter of social justice, that like any minority group, these
students should be provided with these opportunities. In order for
people with disabilities to eventually work in a mainstream environment,
it seemed to me that they needed to learn to compete in a mainstream
environment, and school seemed a good mileau to begin this process. As
the study concludes, I find myself believing, once again, in a balance
between the two environments, because peer support is so important for
adolescents. I believe that adolescents with disabilities need the social
186
and academic stimulation which is supplied by interaction w ith their
own peer group, as well as exposure to that of the larger population.
Having completed an internship working with adolescents with
disabilities in a high school setting, I thought I had a fair idea of how
adolescents with disabilities were dealt with in such a context. However,
early in the interview process, I began to realize that the 'mainstream’
experience, for two of the three students I was working with, was
meeting the requirement of least restrictive environment in only a very
minimal sense, if at all. For this reason, I began to feel som e ambivalence
about the particular high school context that I was working in. The
teachers and aides were all so helpful to me, that I found that I liked
them and wished them well, yet my feeling about their efforts toward
“ implementation of least restrictive environment” was wonder at the slow
progress in this area. As the study concludes, I tend to attribute this
slow progress to lack of adequate funds, conservative political thinking,
and the human tendency to dislike change.
As data collection progressed, I became concerned that I was
tending to focus on issues to which I am sensitive. I am beginning to
understand what is meant by going into the field with only general and
flexible ideas of what to study and how to study it, or the importance of
remaining open to what emerges during data collection. However, no
187
matter how effective one’ s use of naturalistic methods becomes, it seems
as if one would still continue to see more readily those issues to which
one is sensitive. Working with a research team would help to control for
bias in this area.
My own areas of challenge tend to be coping with the human
environment. I became concerned that I was looking more closely at how
the participants coped with others, than at how they coped with
academics or physical access. Yet, coping within a general education
campus, by its nature, seemed to involve coping with humans. Gaining
access to general education placement requires coping with teachers and
other educational authorities. Dealing with academic challenges
effectively, often requires working with other humans; teachers, peers,
tutors, and parents. The issues of social integration definitely require
coping with the human environment.
I found that I identified with each of the participants in different
ways. I really enjoyed getting to know each of them in their uniqueness.
I perhaps identified most with Jason, who with all his verbal skills, was
easily overlooked because he worked at being cooperative; he was not
“ the wheel that squeaks.” I identified with Anne in her struggle with
making friends in Choir, and feeling hurt at being treated differently
than others, or as if there was something ‘different’ about her. I admire
188
her willingness to persevere in that effort. I identified also with Scott
who has capabilities and qualities that others don’t realize, because of his
difficulty with communicating them. Scott’s perseverance with
communication is a good example to follow.
Carrying out this study has changed my point of view in a number
of ways. The experience has brought home to me, as a therapist, the
importance of understanding each person as an individual whose actions
have meaning within their general life context. Understanding the
meaning of actions within a context seems fundamental to a good
therapy experience.
The process of doing this qualitative study has deepened my
understanding of some of the struggles that people with disabilities
experience. I have a better knowledge of how ingrained passivity can be
self-limiting for an individual. Having been reminded of the intense
struggle toward independence that is characteristic of later adolescence, I
realize that this struggle is just as intense for people with disabilities as it
is for those without them. Also, I have a better understanding of the role
that parents can play in the lives of their children with disabilities.
In addition, I have learned a great deal about characteristics of the
school context, including elements which effect the process and rate of
social change, and how the ’consumer’ of education can influence those
189
elements. Looking at the developmental tasks of adolescence, and the
potential role that the high school can play as a source of social and
academic challenge, I have gained a renewed sense of urgency that the
high school years are vitally important and should not be a period of
'biding time’ for any student. Also, I have been reminded of the
significant role that teachers can play in the lives of students.
Lastly, in carrying out this study, I have learned to value research.
I have a much improved understanding of the importance of both
qualitative and quantitative methods, how research contributes to the
body of knowledge in a profession, and how it can, eventually, affect a
profession’s practice.
This section has discussed the process of inclusive education as it
seemed to occur within the Greenwood High School context, and has
discussed some concerns about the structure and quality of the challenges
experienced by this study’ s participants. Portraits of the coping styles of
each of the participants was then presented, followed by a view of the
reflections of this researcher as the study progressed. The following
sections review applications of occupational therapy which can assist
adolescents with disabilities to learn adaptive coping strategies, and
present suggestions for further research in the area of coping for people
with disabilities. Lastly, a brief summary and conclusion are presented.
190
HOW OCCUPATIONAL THERAPY CAN HELP
Occupational therapists can help students with disabilities in the
high school setting to develop and use adaptive coping strategies to
improve their life opportunities (Frank, in press) in a number of ways.
Assertiveness training, when taught and then applied in a specific
situation, such as using a public bus, or requesting to enroll in a specific
class, is one example of an occupational therapy application for this
situation. In the area of enhancement of quality of life, occupational
therapists can assist students with exploration and application of their
capabilities by grading difficult tasks, breaking tasks down into steps,
and helping students develop compensatory strategies, if needed, in
activities such as horticulture, art, or social recreation. Occupational
therapists can provide training and support in the performance of the
tasks and initiative required for student fund raising efforts, such as
candy sales, or bake sales, within the high school community. Such
activities increase student social interaction within the high school, and
afford opportunity to practice the pre-vocational skills needed in such an
enterprise. On a broader scale, occupational therapists have the ideal
skills required to act as advocates to students with disabilities who need
assistance to access the educational system to gain needed supplementary
aids and services to which they have rights.
191
SUGGESTIONS FOR FUTURE RESEARCH
Future qualitative studies of adolescent coping in a mainstream
high school context might benefit from the use of a participant-observer
design, because, while the students did their best to articulate what they
found to be challenging, they were not always able to report the
challenges or threats experienced in the kind of detail that observation of
students coping with daily events in context, with a follow up interview,
was able to uncover. In addition, a participant observer, such as a
researcher working as a teacher’ s aide, might be less intrusive to the
natural context, since he or she would be acting as a normal character
within the context.
A qualitative study of the curriculum supportive of diversity, in
relation to students with disabilities could be useful in discovering
environmental supports for adaptive coping. Another area worthy of
exploration might be a study of the relationship between social skills and
patterns of adaptive coping. Also, occupational therapists might find it
of interest to study the relationship between generally adaptive styles of
coping and engagement in demanding activity (Patterson & McCubbin,
1987), or the seeking of alternative rewards (Ebata & Moos, 1991), such as
enjoyable occupations, as specific coping strategies.
192
FINAL SUMMARY AND CONCLUSION
The purpose of this study was to gather qualitative data, through
interview and observation, which described sources of challenge or threat
experienced by three high school students with physical and
developmental disabilities, and the coping strategies these students used
to deal with those threats or challenges. The mainstream high school was
defined as the context within which sources of challenge were thought to
be found. Architectural, and systemic, or administrative barriers were
thought to be areas of possible challenge or threat within this context. In
addition, the developmental tasks of adolescence, and attitudinal barriers
related to the stigma assigned to disability were thought to be possible
sources of challenge or threat within a mainstream high school context.
A variety of coping strategies were found to be used by the
participants within this context. Each of this study’s participants
demonstrated the use of situation specific coping strategies, as w ell as the
use of a general style of coping. Also, each participant used a complex
combination of problem-solving and emotion-focused coping strategies,
as is suggested by Monat and Lazarus (1991).
Yet the meaning of specific coping strategies for each student was
not clear until one viewed the participant’s actions as they existed within
the individual’s life context. This may demonstrate that the meaning of a
193
coping strategy changes, as the individual context changes. For example,
in this study, a passive response to challenge within Anne’s life, did not
have the same meaning as a passive response to challenge within Jason’s
life. The importance of this idea is clarified by Frank (in press) in her
discussion of the meaning of proximate actions within adaptive systems,
in which she points out that actions sometimes have symbolic, as w ell as
functional meaning and that the success of actions may be indeterminate
if the context in which they are performed is not considered. This idea
seems increasingly important in a professional world, such as that of
allied health, which seems to value only “ verifiable, proximate, functional
outcomes” (Frank, in press, p. 263).
This concept is also of importance within the world of education, in
which student’ s are placed in separate special education classrooms,
because they use wheelchairs, or because of their diagnostic category.
The use of the Individual Education Program (IEP) for each student is
designed to provide an appropriate educational curriculum based on the
individual student’s needs and strengths, not on his or her specific
diagnostic characteristics. Ideally, the IEP considers and reflects a broad
picture of the individual student’s capabilities within that student's life
context. But, as w e have seen in the life of one of this study’s
participants, this is not always the case.
194
It has been noted that social change sometimes occurs very slowly,
and that this is perhaps, especially true within school systems. However,
when one considers the individual lives of students w hose high school
experience encompasses four to six very important years, it seems that
change may be occurring too slowly, and that school systems may need
further assistance or incentive to promote the use of less restrictive
environments.
195
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APPENDIX A
Letter of Informed Consent— Participant
212
Letter of Informed Consent
Participant
Title of the Project: Coping Strategies of Adolescents with Disabilities in the
Face of Challenge or Threat in the Mainstream High School Context
Principal Investigator: Carol Deming Simpson, OTR
University of Southern California, Department of Occupational Therapy
24-Hour Phone: (818) 794-0924
Name of Participant:
Purposes and Procedures:
This is a study on coping skills. This study is being conducted to find out
how students manage challenging situations or solve everyday problems that
occur during an average day at school. This information will help occupational
therapists better understand the types of situations that students find
challenging to promote good problem-solving skills for students in the future.
Your participation in this study involves being observed and interviewed by
an occupational therapy graduate student on 5 occasions, once every two weeks
over a ten week period of time.
The observation includes an occupational therapist watching how you
interact with the school environment, both people and things that you may
come in contact with during an average school day, or at school related events,
such as a school ball game, dance, or club meeting. Observations will take
place only with your knowledge and permission, beforehand. The interview is
a series of questions about what situations at school you have found
challenging, interesting, or difficult, and what you did when faced with a
challenge. The interviews will be held after school and will be tape recorded if
you are comfortable with that. The total time required for interview and
observation will not exceed thirteen hours. One of your instructors will also be
interviewed to gain the same information from an adult viewpoint. This study
is in no way related to your school performance. All information discussed in
the interviews is confidential. You may withdraw from this study at any time.
Your educational record may be read for background information.
Changes:
You will be informed of any changes in the study set up or topics for
discussion. You may ask the researcher questions about the study at any time.
Discomforts and Risks:
There is a minimal possibility of emotional risk in this study. Also, a
possible discomfort would be that you may find some of the interview questions
213
to be personal, but you are not required to answer any questions that you do
not want to answer.
Injury Statement:
If you require medical treatment as a result of injury arising from your
participation in this study, the financial responsibility for such care will be
yours.
Benefits:
No direct benefits of the study are anticipated for the participants.
Participants may find the interview process to be a positive experience and may
contribute valuable information to the study of adolescent coping.
Alternative Treatment:
This study does not involve treatment and therefore there is no alternative
treatment.
Reports:
Results from this study may be published in a scientific journal. If this
should occur, the information will be presented so that no one will know who
has participated in the study. Again, all information about the participant will
remain confidential.
Review by Committees:
University committees are reviewing this study from a scientific and ethical
standpoint.
Consent:
I have read or have been explained and fully understand the contents of this
consent form. I consent to allow my son or daughter to participate in this
study.
Student’ s signature Date
Parent/Legal Guardian’ s signature Date
Parent/Legal Guardian’ s signature Date
214
APPENDIX B
Letter of Informed Consent— Teacher
Letter of Informed Consent
Teacher
Title of the Project: Coping Strategies of Adolescents with Disabilities in the
Face of Challenge or Threat in the Mainstream High School Context
Principal Investigator: Carol Deming Simpson, OTR
University of Southern California, Department of Occupational Therapy
24-Hour Phone: (818) 794-0924
Participant’ s Name:
Purposes and Procedures:
This is a study of coping skills. This study is being conducted to find out
how students manage challenging situations or solve everyday problems that
occur during an average day at school. This information will help occupational
therapists better understand the types of situations that students find
challenging to promote good problem-solving skills for students in the future.
One or more of your students has agreed to participate in this study. Your
participation in this study involves being interviewed by an occupational
therapy graduate student on three occasions over a ten week period of time.
Each interview will take approximately thirty minutes to one hour, for a
maximum total of three hours of interview time. The interview is a series of
questions about your experience of the student’ s coping skills. Specifically, the
interview explores what situations at school, if any, you believe the student
finds challenging, interesting, or difficult. The interviews will be held after
class hours, at a time that is convenient for you and may be tape recorded if
you are comfortable with that. This study is in no way related to the student’ s
academic performance. You may withdraw from this study at any time. All
information gained from this study or discussed in the interviews is
confidential.
Benefits:
You, as a teacher, may benefit from exposure to current
research on adolescent coping skills and on general coping behavior.
Risks:
There are no appreciable risks to you as a result of your participation in this
study.
Injury Statement:
If you require medical treatment as a result of injury arising from your
participation in this study, the financial responsibility for such care will be
yours.
216
Reports:
The results of this study may be published for professional use, but your
identity will not be revealed. All information gained from this study is
confidential.
Review by Committees:
This study is being reviewed by committees to ensure that it meets certain
scientific and ethical standards.
Consent:
I have read and fully understand the contents of this consent form. I
consent to participate in this study.
Teacher's signature Date
217
APPENDIX C
Student Interview Format
Student Interview
1. What events or tasks in the school environment, if any, have you
found to be fun, difficult, easy, or boring? If you found events or
tasks to be difficult, too easy, or boring, what, if anything, did you
do?
2. What events in the school environment, if any, have made you feel
glad, mad, scared, or sad? Any other feelings? If so, what, if
anything, did you do about these feelings?
3. H ow do you make your way around the school campus?
4. If you had a problem getting where you wanted to go on the school
campus, what would you do? Can you think of an example when
this has happened to you?
5. H ow do you get along with the people on campus?
6. If you had a problem getting along with someone, or if someone
was bugging you, what would you do? Can you think of an
example when this has happened to you?
7. H ow do you manage your class and homework assignments? Have
you found any of your class or homework assignments to be fun,
difficult, easy, or boring?
8. If you were having a problem with your school work or w ith one of
your classes, what would you do? Can you think of an example
when this has happened to you?
9. During an average school day, do you usually feel pretty happy, or
do you sometimes find that you are frustrated or upset?
10. If you were having a bad day and were feeling upset, what w ould
you do? Can you think of an example when this has happened to
you?
219
APPENDIX D
Teacher Interview Format
Teacher Interview
This is a study on adolescent coping skills within the mainstream high
school context. For the purposes of this study, coping is defined as the
effort exerted to maintain one’s physiological, emotional, cognitive,
an d /or psychosocial balance in the face of threat or challenge.
1. H ow is inclusion or mainstreaming being carried out at this high
school, in your opinion?
2. From your viewpoint, does the student experience challenge or
threat in the classroom and/or elsewhere on campus?
3. Can you describe an example of a physical challenge or threat with
which you have witnessed the student to be struggling?
4. What strategies, if any, did the student use to cope in this situation?
5. Can you describe an example of a psycho-social challenge or threat
with which you have perceived the student to be struggling?
6. What strategies, if any, did the student use to cope in this situation?
7. Can you describe an example of an emotional challenge or threat
with which you perceived the student to be struggling?
8. What strategy, if any, did the student use to cope in this situation?
9. Can you describe an example of an academic challenge or threat
with which you perceived the student to be struggling?
10. What strategies, if any, did the student use to cope in this situation?
221
APPENDIX E
Model of Triangulation
222
Student
Interview
Descriptive
Data
Researcher
Observation
Teacher
Interview
The Model of Triangulation
223
APPENDIX F
Categorical Data— Scott
Categorical Data— Scott
Coping
• Seeks social support in view of perceived threat or challenge.
• Asks for assistance in view of perceived threat or challenge.
• Ignores perceived threats or challenges.
• Uses humor in presence of perceived threat or challenge.
• Denial in the presence of perceived threat or challenge.
A. Admits to saying " I don’t care’ ’ about issues and opportunities that
he really does care about.
• Occasionally aggressive in the presence of perceived threat or
challenge.
A. Reports “talking back” to teachers in the past.
• Vents emotion in presence of perceived threat or challenge.
A. Occasionally moody, demonstrating sadness, frustration, or anger.
• Confronts responsible persons.
A. Communicates directly with teachers to negotiate getting his needs
or wants met.
• Takes direct action to solve problems.
• Demonstrates persistence in the presence of perceived threat or
challenge.
A. Very willing to persist with efforts at verbalization, in spite of oral-
lingual neurological impairment.
• Practices appropriate restraint in the presence of challenge or threat
(sometimes).
Intelligence
• Demonstrates good judgement regarding safe wheelchair speed.
• Demonstrates good understanding of high school schedule constraints.
• Able to advise his teacher’s aides in use of specific computer software
programs.
• Demonstrates knowledge of geographic layout of the high school; able
to negotiate the environment with confidence.
• Understands that vocational experience placement is contingent upon
meeting behavioral goals.
• Observed to be able to play specific educational computer game
(Concentration) with 90% accuracy.
• Understands that the Department of Rehabilitation and Social Security
Disability Income are important issues in his life.
225
Social Skills
• Friendly, willing to initiate interaction.
• Good manners.
• Good sense of humor.
• Considerate of others.
• Able to “ reach out” to others, emotionally.
• Persistent, in spite of difficulty with verbalization.
Emotions
• Gladness.
• Enjoyment of pleasurable activities.
• Sadness.
• Excitement, anticipation.
• Anger.
• Frustration.
Values
• Family.
• Friends.
• Opportunity to participate.
Sources of Challenge or Threat
• Fun: Driver’s education, joking or teasing with friends, being with
friends, talking with friends, cooking, Living Skills class, playing
games, working puzzles, coloring program on computer, birthday
celebration with family, amusement parks, gardening class, talking to
girls, life science class, life science labs, being in a wheelchair race.
• Gladness: Successful verbalization.
• Sadness: Friends he no longer sees, friends who w ill be graduating,
• Anger/Frustration: People getting “ on [his] case” , upon difficulty with
verbalization, class material he feels is inappropriate.
• Difficult: ‘Driving’ his wheelchair on rainy days, verbalization,
“ keeping [his] mouth shut” in class, academic material in a mainstream
class, driver’s education, negotiating the cafeteria line, concentrating in
a noisy classroom, distractions, worry about family members who are
ill, dealing with medical concerns, dealing with adult transition issues,
IEP meetings, golf course work experience, communicating with his
“foster dad” , missing friends whom he no longer sees.
• Easy: Accessing the high school geographic environment, drawing and
coloring program on computer, asking for help in the cafeteria line,
some computer programs,
226
• Boring: Some computer programs, watching movies at home.
• Excitement/Gladness: Going to amusement park.
• Fear: A shooting at a school assembly a few years ago.
Developmental Tasks of Adolescence
• Completion of physical growth: near completion.
• Definition of vocational goals: in progress.
• Effective interaction with peers: good progress.
• Emotional independence from parents: in progress.
• Adequate sexual identity: in progress.
• Development of a value system and self-esteem which support
responsible citizenship: in progress.
Future Plans and Options
• Voices concern about transition to adult life issues.
A. Independent living options.
B. Meeting medical care needs.
C. Dealing with Department of Rehabilitation and Social Security
Disability Income issues.
D. College and work options.
• Foster family voices willingness to continue with current living
arrangements.
Feels Really Good About Himself When:
• He has spent time with his family of origin.
• He communicates his thoughts and feelings accurately.
• Interacting with people he knows well.
• Joking or teasing with people he knows well.
• Participating in pleasurable activities.
Experience of Mainstreaming/Inclusion
• Strengths
A. Student has specific social skills.
B. Student demonstrates good perseverance in efforts to overcome
difficulty with verbalization.
C. Supportive special education and general education teachers.
D. Students without disabilities demonstrate willingness to help
students with disabilities, especially when asked.
E. Student demonstrates good interest in some of the academic content
of the general education classroom.
227
• Weaknesses
A. Parental involvement in IEP process appears limited.
B. Students propensity to socialize sometimes lacks appropriate
restraint.
C. Transportation difficulties exacerbate student’ s lack of participation
in general education extracurricular activities.
228
APPENDIX G
Categorical Data— Jason
Categorical Data--Jason
Coping
• Seeks social support in the presence of perceived threats or challenges.
• Asks for assistance with perceived threats or challenges.
• Avoids perceived stressful situations.
• Ignores perceived threats or challenges.
• Uses humor in the presence of perceived threats or challenges.
• Passive in the presence of perceived threats or challenges.
A. When placed in repetitive task which student perceived as boring,
student chose to take no action.
• Regulates emotion in the presence of perceived threats or challenges.
• Confronts responsible persons.
• Takes direct action to solve problems.
A. Solves problems via interpersonal negotiation.
Social Skills
• Attractive smile.
• Friendly, willing to interact.
• Enjoys humor.
• People oriented.
• Sensitive, considerate of others.
• Good manners.
Intelligence
• Vocabulary.
A. Correct usage of the following words or phrases: appreciate,
attendance, available, cellular phone, combination, compassion,
conscience, cooperative, environment, fire extinguisher, opportunity,
options, react.
• Awareness of world events of interest to him.
A. Death of rock star Selena.
B. Apology made by Howard Stern in relation to Selena.
• W illingness to learn.
• Enjoys games on the computer.
• Understands etiquette.
• Understands the dynamics of interaction.
A. Passive versus assertive interaction denoted as “the back and forth
game.”
230
B. Awareness of the importance of taking responsibility for asking for
help.
Emotions
• Gladness.
• Excitement, anticipation.
• Enjoyment of pleasurable experiences.
• Fear, nervousness.
• Sadness.
• Embarrassment.
Values
• Family.
• Friends.
• Opportunity to participate.
Sources of Challenge or Threat
• Fun: Field trip to the snow, amusement parks, shopping mall,
Valentine party, joking with friends, working on the computer, making
salad, selling candy for fund raising, parties, ‘special games’ event.
• Easy: Shredding paper, cutting carrots for salad,
• Boring: Getting up in the morning, “ waiting around” to ask for help,
shredding paper.
• Difficult: Negotiating his wheelchair through the cafeteria line, getting
up in the morning, getting transportation, ‘driving’ his wheelchair on
rainy days.
• Excitement, anticipation: going to amusement parks, field trips.
• Fear: N ew or unknown environments.
• Sadness: Death of sibling, death of rock star Selena.
Feels Really Good About Himself When:
• Experiences success in activities.
A. Selling candy to raise funds for school events.
• Interacting with others.
A. Enjoys sharing humorous situations with others.
• Involved in activities.
A. Class cooking activity.
B. School field trips (snow trip, amusement parks, mall trip, etc.).
C. Class holiday ‘parties.’
231
Involvement in Hispanic Culture
• Interested attendance at Cinco de Mayo entertainment at the high
school.
• Student is bi-lingual, English-Spanish.
• Choice of Spanish radio and television entertainment at home.
• Interacts with Spanish speaking friends at school.
• Interest in Hispanic performer Selena.
• Lives in a predominately Hispanic neighborhood.
Developmental Tasks of Adolescence
• Completion of physical growth: in progress.
• Definition of vocational goals: little progress.
• Effective interaction with peers: good progress.
• Emotional independence from parents: in progress.
• Adequate sexual identity: in progress.
• Development of value system and self-esteem which support
responsible citizenship: in progress.
Future Plans and Options
• Three more years of high school.
• Interest in studying medicine.
• Career worksheet (one year ago) indicates student chose to work with
machinery.
Experience of Mainstreaming/Inclusion
• Strengths
A. Student exposed to general education environment on a daily basis,
during lunch, between classes, at student assemblies, at student
government (A.S.B.) meeting, at lunchtime events (Cinco de Mayo
celebration).
B. Student behavior indicates that the student includes himself as a
member of the general Hispanic community at the high school.
C. Potentially supportive general education and special education
teachers and environment.
• Weaknesses
A. Parents unable or unwilling to act as advocates for the student in
the IEP process.
B. Transportation difficulties add to student’s inability to participate in
general education extracurricular activities.
C. Student tendency toward passive acceptance of the status quo; “ I’m
not much of one to complain.”
232
APPENDIX H
Categorical Data— Anne
233
Categorical Data— Anne
Coping
• Asking for assistance with perceived threat or challenge.
A. Trait; student believes the school environment to be a helpful
environment.
B. Situation specific; student uses spontaneously during activity.
• Seeks social support in view of perceived threat or challenge.
• Withdrawal (non-participation) in view of perceived threat or
challenge.
• Confronts responsible persons.
A. Accepts responsibility for friendship maintenance.
B. Negotiates sharing of responsibilities and space with involved peer
or peers.
• Takes direct action to solve problems.
A. Initiates social interaction with peers, both with and without
disabilities.
B. Volunteers to be first in activity.
• Adheres closely to (commits to memory) specific learned behaviors to
guide actions or activities in the presence of threat or challenge.
A. Adheres strictly to high school schedules and routines, including
bussing times.
B. Habitually copies information from the classroom blackboard as
part of academic responsibility.
C. Habitually gives compliments during the course of social
interaction.
D. Gives rote answers to questions when answer is an unknown (e.g.
“ Sometimes it is, sometimes it isn’t” , and “ I don’t know, but Mrs.
Walters knows” ).
• Vents emotion in the presence of perceived threat or challenge.
• Practices restraint appropriately in the presence of perceived threat or
challenge.
• Uses rationalization in the presence of perceived threat or challenge.
Social Skills
• Good manners.
• Willing to initiate interaction.
• Willing to take responsibility for friendship maintenance.
• Sensitive to the feelings of others.
234
• Consistently present and on time for activities.
• Likes the feeling of being helpful to others.
• Good grooming.
• Enthusiastic about activities.
Emotions
• Gladness, well-being.
• Enjoyment of pleasurable activities.
• Sympathy for others.
• Sadness.
• Excitement, anticipation.
• Embarrassment.
• Confidence, trust.
Values
• Family.
• Friends.
• Opportunity to participate.
Valued Events
• Participation in choir.
• Camping weekend with friends.
• Birthday celebration.
• School field trips.
• Family events, e.g. baby shower.
Sources of Challenge or Threat
• Fun: Shopping mall, pro baseball game, amusement parks, playing
P.E. sports and games, playing Uno card game, weekend camping trip,
being with friends, talking to friends, birthday celebrations, folding
newspapers in fourth period class, being a participant in Choir, going
to the beach, being at school, sharing with the class, winning a race,
grocery shopping with Mrs. Walters’ class, having a day off from
school to spend time with her mother, playing basketball at home.
• Easy: History class, making friends (sometimes), reading, sharing with
the class.
• Difficult: History class (sometimes), being a participant in Choir.
• Embarrassing: Forgetting someone’s name.
• Confusing: School schedule changes (occasionally, but “no big deal” ).
• Boring: Watching television.
235
• Sadness: Sympathy for a crying friend, misses absent teacher (“ a little
bit” ), misses brother who is away from home (“ a little bit").
• Relaxing: History class.
• Hurt feelings: Being teased (“ a little bit” ).
Feels Really Good About Herself When:
• Participating in activities.
A. Games and sports.
B. Field trips (amusement parks, professional baseball game, shopping
mall, etc.
C. Weekend camping event.
D. Vocational experience classes.
• Interacting with friends or others.
Experiential Intelligence
• Spontaneously interprets social cues.
Developmental Tasks of Adolescence
• Completion of physical growth: near complete.
• Definition of vocational goals: good progress.
• Effective interaction with peers: good progress.
• Emotional independence from parents: in progress.
• Adequate sexual identity: in progress.
• Developm ent of a value system and self-esteem which support
responsible citizenship: good progress.
Future Plans and Options
• Choice of vocation: restaurant worker.
• Part time work.
• Community college program.
Experience of Mainstreaming/Inclusion
• Strengths
A. Parental involvement.
B. Careful balance of time spent between special and general education
environments.
C. Supportive general and special education teachers.
D. General education class structured to support diversity.
E. Student has above average social skills.
F. General education students are generally supportive of students
with disabilities, especially when help is requested.
236
• Weaknesses
A. Occasional isolation in general education environment.
B. Inadequate remediation of academic material in general education
environment.
237
APPENDIX I
Categorical Data— The Context
238
Categorical Data— The Context
Communication
A. Between teachers and teacher’ s aides.
B. Between teachers, teacher’s aides, and students.
C. Between teachers and administrators.
D. Between faculty and office or maintenance staff.
E. Between faculty, staff, administrators, and the general public.
F. Between teachers and parents.
Curriculum Content
A. In special education.
1. Computer assignments designed to improve math, spelling,
reading, and art skills.
2. Students working in small groups on reading and writing skills,
assisted by student aides.
3. Teacher interaction with class as a whole, working on specific
social skills needed when going out to a restaurant to eat.
4. Group of approximately ten students working with teacher’ s
aide on daily living skill: cooking.
5. Two small groups of students, supervised by teacher’ s aides,
working outdoors on gardening tasks, and collection of rubbish
on campus grounds.
6. Teacher interaction with class as a whole, working on meanings
of different cultural holiday traditions.
7. Teacher interaction with small group of students discussing
biology of reproduction.
8. Multiple special education classes combined to watch movies.
9. Multiple special education classes combined to celebrate
Valentine’s Day.
10. Special Education class field trip to local shopping mall.
11. Students working individually on sorting newspapers for a
recycling project, with teacher supervision.
12. Students copying down a "Quote for the Day” from the
blackboard.
B. In General Education.
1. Teacher interaction with class as a whole discussing symbolic
meanings of characters in a fictional piece designed to illustrate
Civil Rights and segregation issues in U.S. History.
2. Students working independently on essay assignment out of a
history book.
239
3. Teacher interaction with class working on individual
presentations by students of songs they liked, and what
meanings the songs had for them.
Special Education: Dealing with unique problems.
A. Using discipline with unacceptable behavior.
1. Aggressive behavior, such as hitting.
2. Suspension of student with a behavioral disability.
B. Helping students with physical or medical concerns.
1. Scheduled toileting.
2. Making sure students have a change of clothing available in
case of mishap.
3. Making sure medications concerns of students are dealt with.
Special Education: Values.
A. Importance of education.
B. Dignity and rights of persons with disabilities.
C. Allowing as much freedom of choice as possible within an orderly
structure.
D. Importance of communication.
E. Importance of carrying out discipline promptly.
Special Education: Dealing with Administrative Issues.
A. Classroom phone bill.
B. Concern about cuts in staffing due to district budget difficulties.
Teacher’ s thoughts about inclusion.
A. Special education.
1. Both students and teachers need education about disability,
because they do not know what to expect in relation to
disability.
2. Students with disabilities should be carefully placed; a poor
sociocultural match may lead to stigmatization.
3. It is very important to communicate with the general education
teacher in whose class a student with disability has been placed.
It is important that the general education teacher should not
feel that the student has been “ dropped off” , but that the
student’ s progress is being monitored.
4. The most significant barrier to inclusion is “ fear.” The example
given to describe this was a math teacher having heard a rumor
about an autistic student having been placed; the student
demonstrated inappropriate behavior, disrupting the class. This
240
rumor appeared to have resulted in an attitudinal barrier for
the math teacher.
5. The Individualized Education Program (IEP) “tends to reflect
parental expectations.”
6. In relation to the placement of students with disabilities into
general education classes, the analogy of ‘the squeaky wheel
getting the grease’ was given.
B. General education
1. Contact between groups of students with and without
disabilities is a good educational experience for non-disabled
students. It helps non-disabled students to “ learn how the other
half lives."
2. Inclusion of students with disabilities into general education
classes helps end prejudicial attitudes and segregation.
3. Placements need to be monitored to make sure they are
appropriate, and that the student is gaining something from the
experience.
4. Placement of a student with a disability should not be allowed
if it keeps the rest of the class from moving forward.
Contextual strengths for student coping in the mainstream.
A. All teacher participants, having experienced inclusion, spoke
positively about it.
B. Environment generally supportive of students with disabilities.
Non-disabled students observed to be willing to help, especially
when asked; also willing to interact.
C. General education history class with specific curriculum designed to
be “ supportive of diversity.”
1. Structured to reflect and support the diversity of all groups on
this high school campus (although not in proportion).
2. Emphasizes the importance of personal meaning, and the
sharing of diverse points of view with the class.
3. Emphasizes self-esteem and self-concept, and “ development of
student voice.”
D. Ongoing collaborative efforts driven by Special Education.
1. Integration with other departments on campus, on a regular
basis, resulting in students with disabilities participating in
general education academic events such as Life Science
Dissection Labs.
2. Presentation given each year to Freshman English classes on the
nature of disability.
241
3. Opportunities for heterogeneous groups to interact socially,
through arrangement of general campus outings to cultural
events such as community theatrical productions.
Contextual weaknesses for student coping in the mainstream.
A. The number of placement options along the ‘ continuum’ appeared
limited, in that there was no resource room or resource specialist’s
services in visible use, during this study.
B. There appeared to be few organized efforts to involve students with
disabilities in the extracurricular activities of the general high
school, even as spectators.
C. Some evidence of attitudinal barriers among general education
teachers was gathered, such as reported fear of the unknown in
relation to students with disabilities, and reported aversion to the
physical or medical characteristics of disability.
242
APPENDIX J
Definition of Terms
Definition of Terms
Academic Challenge— Those events or feelings which took place as a
result of classroom cognitive requirements perceived by the student with
a disability to be disruptive to his or her emotional, physiological, or
social balance as he or she attempted to access the school academic
environment.
Administrative Challenge— A type of psycho-social threat or challenge to
a student’s ability to access the general school environment, as
understood by Stilwell et al., (1989) as “ the w ide range of administrative
decisions that influence resources delivered to students with handicaps”
(p. 342).
Anger— A strong feeling of displeasure and usually antagonism (Merriam-
Webster, 1993). For the purposes of this study, this is a type of emotional
challenge.
Architectural Challenge— A type of physical challenge or threat in which
the student experiences architectural barriers as causing disruption to his
or her ability to access the school’s physical environment.
Behavioral Challenge— A type of intrapersonal psychosocial and
emotional threat or challenge to a student’s ability to access and make
appropriate use of the general school environment.
Boring— Tiresome. That which causes the state of being weary and
restless through lack of interest (Merriam-Webster, 1993). For the
purposes of this study, an example of cognitive challenge or threat.
Cognitive Challenge— Those events taking place as a result of academic
requirements perceived by the student to be disruptive to his or her
emotional, physiological, or social balance as he or she attempts to access
the school’s academic environment.
Confusion— The act or instance of being disturbed in mind or purpose;
thrown off (Merriam-Webster, 1993). For the purposes of this study, an
example of emotional challenge or threat.
Coping— The effort exerted to maintain one’ s physiological, emotional,
cognitive, and/or psychosocial balance in the face of threat or challenge
(Monat & Lazarus, 1991).
244
Easy— Activities described to be carried out without any mistakes,
mishaps, or trouble of any kind, in the student’s experience. The level of
challenge experienced in such activities would include a higher degree of
personal skill than was demanded by the activity in question, yet not so
high as to make the activity boring (Csikszentmihalyi, 1984, 1990).
Emotional Challenge— Intrapersonal feelings and their associated
physiological effects perceived by a student to be disruptive to his or her
emotional, physiological, cognitive, or psychosocial balance as he or she
attempts to access the general school environment.
Enjoyment— The action or state of taking pleasure or satisfaction in an
activity (Mirriam-Webster, 1993). For the purposes of this study, this is
used to reflect the student’ s experience of an optimal level of challenge
(Csikszentmihalyi, 1984, 1990) during activity.
Excitement— An emotional experience of enthusiasm when challenged or
in anticipation of challenge. For the purposes of this study, an example
of emotional challenge or threat.
Fear— An unpleasant, often strong emotion caused by anticipation or
awareness of danger (Merriam-Webster, 1993). For the purposes of this
study, an example of emotional challenge or threat.
Fun— An experience of an optimal level of challenge, as understood by
Csikszentmihalyi (1984, 1990) in which the individual’s level of skill is
experienced to be in balance with the demands of the specific activity.
Gladness— A state of experiencing pleasure, joy, or delight (Merriam-
Webster, 1993). For the purposes of this study, an example of emotional
challenge.
Inclusion— “ The provision of services to students with disabilities, in their
neighborhood schools, in age appropriate regular education classes, with
the necessary support services and supplementary aids— for both children
and teachers” (Lipsky & Gartner, 1994, p. 36).
Mainstreaming— “ The provision of opportunities for students labeled as
handicapped who are in special education settings to spend a portion of
their time in general education” (Lipsky & Gartner, 1989, p. 17).
245
Nervousness— The state of being easily excited or irritated; jumpy, timid,
or apprehensive (Merriam-Webster, 1993). For the purposes of this study,
a type of psychosocial and emotional challenge or threat.
Neurological Challenge— A type of physiological challenge or threat
which is experienced by the student as disruptive to his or her
physiological, emotional, or social balance as he or she attempts to access
the general school environment.
Psychosocial Challenge— Any external phenomenon that leads to or is a
result of human interaction, or its absence, that is perceived by the
student to be disruptive to his or her emotional, physiological, or social
balance as he or she attempts to access the school’ s human environment.
This definition was purposefully broad in order to include larger issues,
such as the carrying out of administrative policy, as w ell as individual
issues, such as brief verbal engagement with friends.
Sadness— The state of being affected with grief or unhappiness (Merriam-
Webster, 1993). For the purposes of this study, an example of emotional
challenge or threat.
Transportational Challenge— A type of physical challenge or threat in
which a student perceives that the availability of transportation he or she
is provided with, or it’s lack, is disruptive to his or her ability to access
the physical and social aspects of the school environment.
246

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Creator Simpson, Carol Deming (author)

Core Title Coping Strategies Of Three Adolescents With Disabilities

Degree Master of Arts

Degree Program Occupational Therapy

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

Tag education, special,health sciences, rehabilitation and therapy,OAI-PMH Harvest,psychology, physiological,psychology, social

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Advisor Clark, Howie A. (committee chair), Neville-Jan, Ann (committee member), Parham, Linda Diane (committee member)

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