|UFDC Home||myUFDC Home | Help|
This item has the following downloads:
LEISURE EXPERIENCES OF YOUNG ADULTS
WITH DEVELOPMENTAL DISABILITIES: A CASE STUDY
KARI MICHELLE KENSINGER
A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY
UNIVERSITY OF FLORIDA
Kari Michelle Kensinger
This dissertation is dedicated to the athletes of Special Olympics Nebraska and
Special Olympics Florida, who inspired this project.
For every major endeavor in life, there are people who help along the way. Some
people are official necessities needed to make sure the "i"s are dotted and the "t"s are
crossed. Without these official necessities a person cannot navigate the red tape of the
system. But these official necessities are not the reason a project like this gets
accomplished. Intangible support from family, friends, and mentors (and a belief in
something bigger) helps a person navigate the obstacles that stand in the way of
completing a task. For the unofficial necessities, I am truly grateful.
I would first like to thank the Holy Trinity for calling me to pursue my doctorate,
for inspiring my ideas, and for giving me the strength, wisdom, and perseverance to
complete this project.
Secondly, I would like to thank my family for their support and encouragement
throughout this process. My family understands my passion, and shares it with everyone
they meet. Every person whom they encounter knows what therapeutic recreation is. I
thank them for being more proud of me for being a recreational therapist and an advocate
for individuals with disabilities, than for earning this degree. I thank them for helping me
keep things in perspective. My parents, Chuck and Kathy, supported me in everyway
possible. It would take a whole dissertation to describe how much they have supported
and encouraged my endeavors. My sister, Kim, has always been with me on this journey.
As a speech language pathologist she understands my passion, and helps me keep things
in perspective. My grandparents, Toni and Chuck Vana, have always encouraged my
pursuits and inspired me to pursue my dreams. They built the foundation which enables
me to reach my true potential. I thank my aunt Patti Vana; my uncle Chuck Vana; and my
cousins, Eric, Allison, and Annie Vana, for always reminding me of the importance of
family. I would also like to acknowledge Robert, Helen and Howard Kensinger, Kim
Vana, and Mark Norris.
The individuals who participated in the study are like family to me. I thank them
for letting me into their lives, for keeping me in their thoughts and prayers, for reminding
me of my true passion, and for believing in me and working with me to share this
message. They are very special people in my life, and I will never forget them.
I would be remiss if I did not acknowledge the contributions of my dissertation
coach, Dr. Candace Ashton-Shaeffer (formerly of the University of Florida, currently at
the University of North Carolina at Wilmington). If not for her, I would never have
pursued my doctorate. I thank her for being there through the good, the bad, and the ugly
parts of this experience. I thank her for continuing to guide, mentor and advise me: and I
thank her for not abandoning me. I never would have started, let alone finished this
project, without her assistance.
Dr. Heather Gibson picked up where Dr. Ashton-Shaeffer left off. I thank her for
adopting me, for challenging me and for understanding me. I thank her for being there
whenever I needed assistance or advice. Her continuous devotion to the project was
demonstrated by her willingness to spend hours above and beyond that which she ever
could be recognized or compensated for. This devotion is greatly appreciated. Without
Dr. Gibson's assistance, the project would never have developed. Without her
mentorship, friendship, encouragement, and words of wisdom I never could have
survived these last few years. For that I will always be grateful.
I thank Steve Anderson, my chair, for serving as the inspiration and motivation for
completing this project. Furthermore, he found his way back to shore this summer, so that
I could defend before hurricane season. His confidence and belief in my skills and
abilities allowed me to finish this project on time.
I thank Dr. Jeanne Repetto for serving on this committee and for sharing her
expertise in transition and special education with me. She has the great ability to ease the
stressors associated with graduate school with her calm demeanor. Her understanding and
interest in the multiple facets of this study enhanced this project. She helped me develop
an academic plan which allowed me to develop a cohort at the University of Florida.
Therefore, I also acknowledge her colleagues in the Department of Special Education and
the College of Education including: Drs. Diane Ryndak, Vivian Correa, Cecil Mercer,
and Anne Seraphine; the students in the transition class, and the doctoral students in the
trends class. They all showed me that there was a safe haven at the University of Florida.
I also thank Holly and Charlie Lane for providing opportunities to network with this
I thank Robert Beland for serving on this committee. I appreciate his attempts to
help me gain access to the DD community in Gainesville. Drs. Lori Pennington-Gray and
Dovie Gamble were not on this committee but they were always available to talk to for
advice about graduate school and the dissertation.
I would also like to thank Drs. Frank Brasile and Don Greer (at the University of
Nebraska at Omaha). They have always been there for me, on my good days and my bad.
They have continuously encouraged and supported my professional development.
Without them, I would not have mastered nor understood our discipline to the extent that
I have. They provided me with a strong foundation one that enabled me to conduct
research and pass my qualifying exams and coursework at this level.
I would also like to acknowledge the contributions ofDrs. Jo-Ellen Ross and
Jerome Singleton. They helped me get my thoughts in order while writing the
dissertation. I truly appreciate their words of guidance, encouragement, and support.
There are several other mentors that I wish to thank for encouraging me over the
years. I met these individuals at conferences of the American Therapeutic Recreation
Association (ATRA) over the past 10 years. They are leaders in the profession. They
write textbooks. The have served on the board of directors, chaired committees, or were
elected to the chapter affiliate council. They are truly a great group of professionals, too
numerous to name. Each has inspired me to be a leader, continue my education, and grow
as a person and professional. Their mentorship, support and encouragement have been
I must also acknowledge my students at the University of Florida. I must especially
thank the "TR nerds", Kelli and Emily, for they are the reason I persisted in this
endeavor. Their enthusiasm for TR, their willingness to learn, and their dedication to the
profession reminded me why I wanted to be a professor.
I thank the little fishies in and out of the fish bowl who introduced me to a much
bigger sea than I ever would have imagined. I must thank those graduate students who
introduced me to Professor Kegger. I want to thank Professor Kegger for teaching me
how to bring balance to my life. I thank, Jenny Green for being a constant source of
support and for providing opportunities for me to escape. My special gratitude goes to Jill
Jaggers and Mandy Wilson with whom I shared this writing/rugby/procrastinating
experience. Cari and Gloria showed me what this program was all about and were there
on my worse days.
I thank my friends and colleagues back in Omaha for encouraging me to take this
journey on the road. When there were forks in the road they reminded me of my true
passion and put this mission in perspective. Is this proof that I am not hiding out in my
TABLE OF CONTENTS
A C K N O W L E D G M E N T S ................................................................................................. iv
L IST O F F IG U R E S .... ...... ................................................ .. .. ..... .............. xii
A B S T R A C T .......................................... ..................................................x iii
1 IN TR OD U CTION ............................................... .. ......................... ..
The Problem ................................................... 2
S tereo ty p e s ....................................................... 3
C clinical D definition ................................................. ..... ... .. ........ .. 5
Quality of Life ............................................ ................ ......6
L leisure ......................................................................................8
The D ynam ic R research Process....................................................... ............... 10
Theoretical Fram ew ork ................................................... ....... ... .........11
G rounded Theory ........................................................ .... .............. 11
Sym bolic Interactionism ...................... ....... ................................... 12
P purpose ............................................................... .... ..... ... ...... 14
R research Q u estion s .............................. ........................ .. ........ .... ............15
Lim stations and D elim stations ............................................................................. 15
S u m m a ry .......................................................................................................1 6
2 LITERATURE REVIEW ............................................................ ...............17
Q u ality o f L ife ................................................................17
D einstitutionalization ...................... ................ ..................... .. .. .... 18
C om m unity Integration ............................................... ............................ 19
C om m unity A dju stm ent ........................................................... .....................20
Normalization ................................... .. ................... .... .......... .21
Implications for Recreation Service Delivery ...............................................24
Leisure and the "Normal" Society........ .................................................... 26
C characteristics of L eisure ........................................................................ .. .... 27
F re ed o m ............................................................................... 2 7
Positive Feelings .......................... ...... ...... ... ...............28
The N ature of the Leisure Experience ............................................................ 29
L eisu re as E x p erien ce............................................... ..............................2 9
The Social N ature of Leisure........................................... ............... ...............42
Leisure and Individuals with Developmental Disabilities........................................46
C characteristics of L eisure ........................................................................ .. .... 46
Freedom and Self-D eterm nation .............................................. ................46
Positive Em otions.............. .... ...... .... ........ .. .. ... ..............49
The Nature of the Leisure Experience of Young Adults with DD....................50
L leisure as E xperience............................ ................. ................ ..............50
Operationalizing the Leisure Experience of Individuals with DD ...................56
Social Nature of Leisure Among Individuals with DD ....................................62
Friends .................. ..... ..... .......... ........... .. ........... 62
F am ily ................................................... 64
Summary ....................... ......... ............. ...............65
3 M E T H O D S ........................................................................................................... 6 7
D ata C o lle ctio n ...........................................................................................................6 8
Interviews and Developmental Disabilities............................ ............... 68
A applying the Interview Process............................................... 69
D ata A nalysis................................................... 72
R eliab ility an d V alidity ......................................................................................... 7 3
Recruitm ent Strategies............................................. 74
The Physical Community ................................................79
R research P articip ants..................................................................................... 82
D a n n y ................................................................8 3
D ia n e .........................................................8 4
B ecky ................................................................................................... ......85
C a ro l ................................................................8 6
Je ssic a .................................................................................................... 8 6
A n d y ................................................................8 7
M ike ......... ......... ....................................................... 88
C h a rlie ........................................................................................................... 8 9
K e lly ................................................................9 0
N a o m i ................................................................9 0
Su m m ary ......................... ........................................................................ 9 1
4 R E S U L T S .............................................................................9 3
The Global Nature of the Leisure Experience ..................... ...............94
The Social Domain .......... ......... ..........................94
Friendship ......................................................................... ......... ................. 95
The Work Domain ............... ........................ .........108
The Specific Elements of the Leisure Experience ............ .............................. 113
Characteristics of Leisure, Leisure Awareness and Leisure Meaning ...........1...14
The Existential Nature of the Leisure Experience ...................................1..14
Leisure as a Reflection of "Normalcy"............... ....................................... 117
The Q quality of L ife E quation..................................................................................125
S u m m a ry ......................................................................................................12 5
5 DISCUSSION .................. ................................... ........... .............. 127
The Global Nature of the Leisure Experience: GNL= I CI.................................... 128
The Specific Elements of the Leisure Experience (SEL)............... .................. 131
The Leisure Experience (LE= GNL+ SEL)......................................................134
Leisure as a Reflection of Normalcy (LRN)........................................................136
Q quality of L ife ................ ..................................... ................. 138
Implications for Professional Practice ....................................... ...............140
Im plications for Future R esearch......................................... ......................... 141
Conclusion ..................................... ................................. ......... 142
A INITIAL IN TERVIEW GUIDE ..................................... ......................... .. ......... 144
B FOLLOW-UP INTERVIEW GUIDE................................... ....................... 146
C CIR CLE O F SU PPOR T GU ID E ......................................................... ..................148
D REVISED CIRCLE OF SUPPORT INTERVIEW GUIDE ....................................150
LIST OF REFEREN CE S ................ .......... ............................ ....... ..................... 152
BIOGRAPHICAL SKETCH ............................. ............................. ............... 169
LIST OF FIGURES
1 Domains of Life: Work, School, Family and Leisure .................. .... ..........128
2 Initial Facets of the Leisure Experience (Mannell, 1999).................................... 132
3 The L leisure Experience......... ................. ................... .................. ............... 135
4 Leisure as a Reflection of Normalcy........ .......................................... 137
Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy
LEISURE EXPERIENCES OF YOUNG ADULTS
WITH DEVELOPMENTAL DISABILITIES: A CASE STUDY
Kari Michelle Kensinger
Chair: Stephen Anderson
Major Department: Tourism, Recreation and Sport Management
The aim of several human service professions is to enhance the quality of life of
individuals with developmental disabilities, through the use of interventions such as
recreation and leisure services. These services are often based on the Normalization
Principle. The concepts of quality of life and leisure are subjective in nature, and
therefore are interpreted indifferent ways by different people. The purpose of this study
was to determine how young adults with developmental disabilities perceive their own
Semi-structured, face to face, in-depth interviews were conducted with ten
individuals (ages 21 to 32 years) who have developmental disabilities. Each participant
was interviewed twice. In addition, the parent or parents) of these individuals were
interviewed. All ten of the participants in this study live, work, and play in a variety of
settings with different levels of support. All of them are white; live in an upper-middle-
class, suburban area of a moderate-size city in the heartland of America; and have
Using constant comparison, several themes emerged from the data. The two most
prevalent themes suggest that the leisure experiences of these individuals are existential
and social in nature. These young adults with developmental disabilities seem to establish
a hierarchy of preferences regarding activities and social interaction. Most of the
participants in this study prefer spending time with friends and family.
Grounded theory and symbolic interactionism were used to guide this study. The
leisure experiences of this population appeared to be based on the interactions that these
individuals have with others, which is consistent with the ideas of symbolic
interactionism. Grounded theory was used to generate a model that describes how the
leisure experiences of this population involve internal and external dimensions. Overall,
the leisure experiences of young adults with developmental disabilities reflect the leisure
experiences of young adults without developmental disabilities.
In America, there are approximately seven million individuals with a
developmental disability such as: mental retardation, autism, Down syndrome, or cerebral
palsy (ARC, 2004). These individuals with developmental disabilities have values,
preferences, and a desire for happiness. Over the years, many people have developed
stereotypes and clinical labels, in order to describe this population. These descriptors,
however, tend to mask individual differences and abilities, thereby allowing society to
hinder the individual's ability to reach his or her potential. To counter society's
perceptions, services have been designed to minimize differences, to expose abilities, and
to enhance quality of life. Many of these service providers use recreation and leisure
interventions to meet these goals. My study explores the subjective nature of leisure from
the perspective of individuals with developmental disabilities.
This study uses a case study approach to examine this phenomenon, in a unique
community embedded within a state known to provide innovative services for individuals
with developmental disabilities. A variety of programs have been used by members of
this community to enhance quality of life. These programs include: residential services,
vocational services, special education services, recreation programs, parental support and
advocacy services, and community outreach, education and awareness programs.
National corporations that offer residential and vocational services to this population (i.e.,
Bethage, Martin Luther Homes) developed within this state. Special education programs
within the public school systems were initiated decades before the implementation of
Public Law 94-142. Disability awareness programs such as The Kids on the Block puppet
shows are prevalent throughout the community. The state had one of the first chapters of
Special Olympics. Likewise, there are other recreation opportunities such as camps and
sports leagues available for this population. I grew up in this community. I was the
product of these disability awareness programs. I worked in the schools and the
This case study uses a variety of qualitative research methods to describe the
leisure experiences of young adults with developmental disabilities who live in this
community. A qualitative study recognizes the role of the researcher, and acknowledges
his or her subjectivities. Every study begins when the researcher identifies a problem or
an issue which the researcher feels is important. The researcher begins to explore this
problem or issue from a perspective based on personal experiences and values. The
researcher adopts a method that best helps explain and describe the issue at hand.
Throughout this project, I will use both first-person and third-person terminology to
describe the role of the researcher. First -person terminology is used to emphasize those
situations where my subjectivities might influence this study. Therefore, this chapter
begins where my interest in this topic began, and it explains the process through which
this study came to fruition.
I was guest lecturing a few weeks ago on therapeutic recreation for people with
developmental disabilities. At the end of the class, one of the students approached me.
"Do you consider me to have a developmental disability?" she asked. The student, who
was driving an electric scooter, told me that she had cerebral palsy. I thought about her
question for a few moments and gave an ambivalent response. After all, there are clinical
definitions, like the one I used when I proposed this study nearly a year ago; and, there
are stereotypes, our own perceptions of a label based on experiences.
My response to her question is as follows. "I know clinically, that cerebral palsy
can be a developmental disability if it impairs functional skills in a few areas of life." I
did not mention the idea of developmental onset because she was a young adult and it not
seem important at the time. I knew that was not what she wanted to hear, so I continued.
"But in my mind, I tend to think about developmental disabilities in terms of cognitive
delays. I worked at a camp for children with developmental disabilities during high
school and college, and several of my co-workers had cerebral palsy or spina bifida I
never considered my co-workers to have developmental disabilities. For the most, part
they had physical disabilities," I explained.
This response reflects on stigma associated with developmental disabilities. I often
hear wheelchair athletes say "I am not a Special Olympian, I'm not retarded." They
continue to differentiate themselves from individuals with developmental disabilities
stating, "I'm an athlete ... I'm not in it for hugs." This particular student with a physical
disability didn't make statements such as these. She was just looking for me to tell her
what label I associated with her. I do not know if she viewed one label as being more
positive than the other. We didn't discuss the connotations associated with these labels.
Therefore, I didn't point out the similarities between myself and individuals with
developmental disabilities. I didn't talk about how we all have needs, wants, and desires.
I didn't talk about how we all feel happy and sad; how we all experience love, fear, joy,
pain, hope and despair. I didn't talk about our commonalities. I assumed that this student
knew this; after all, I was labeling her a "therapeutic recreation" student. I assumed that
therapeutic recreation students were empathetic and accepting. If I was talking to a
different audience, I would emphasize these commonalities in hopes of breaking down
some of the negative stereotypes associated with the labels of "developmental disability,"
"mental retardation" and "Down syndrome." The perceptions that some people have
regarding these labels can mask the abilities of individuals who have one of these
A few years ago, I was working with a boy who had Down syndrome. For the
purposes of this example, I will call him Billy. I was hired to help facilitate an inclusion
program within a general recreation program for individuals without disabilities. Billy
was an excellent swimmer; he swam laps with proficiency using a picturesque freestyle
form. On our first day at this general recreation program, the lifeguards conducted a skills
test on all of the children, including Billy. Billy passed the test and the lifeguards told
Billy that he could swim anywhere in the pool. Later in the afternoon the director of the
recreation program visited the pool. He was shocked to see Billy in the deep end of the
pool. He vetoed the lifeguard's initial decision, and instructed us that Billy was only
allowed to play in the shallow end of the pool. We protested his decision, and educated
him on Billy's abilities. Eventually, through our advocacy efforts, Billy was able to swim
anywhere in the pool. The director's preconceptions were consistent with stereotypes
perpetuated throughout society.
Several stereotypes associated with the labels of developmental disabilities have
been perpetuated over the years. Many people view individuals with developmental
disabilities as being helpless; and therefore people pity them, and want to take care of
them (Devine, 1997; Funk 1987; Hey & Willoughby, 1984). People with mental
handicaps are stereotyped as being incapable of thinking, speaking, and acting for
themselves (Dudley, 1987). Danforth and Navarro (1998) found that people use the term
"mental retardation" when people describe a group of people, things that are "abnormal",
special places, and people of whom they are afraid.
As society embraces stereotypes such as these, people associated with a given label
(e.g. mental retardation) are stigmatized (Goffman, 1963; Bedini, 2000). Bedini suggests
that stigma breeds animosity, pity or fear; which can be one of the greatest barriers to
pursuits of individuals with disabilities. She implied that as people resist perceived
stigma, they strive to make interactions in the community more acceptable.
Other have suggested that stigmatization can be reduced, if labels such as mental
retardation are deconstructed and eliminated. Kauffman (1999, 2003), however,
suggested that in some instance, removing labels can mean removing services. He
suggested that labels exist for a reason people have special needs, and they receive
special services to address these needs. Labels (e.g., mental retardation, developmental
disability) have been used by professionals who provide education, health care, and other
human services to individuals with special needs.
The National Association of Developmental Disability Councils (NADDC, 2003)
defines a developmental disability
* As a severe, chronic disability of a person five years of age or older,
* Attributable to a mental or physical impairment or combination of mental or
* Manifested before the person attains age twenty-two;
* Likely to continue indefinitely;
* Resulting in substantial functional limitations in three or more of the following
areas of major life activity: self-care, receptive and expressive language, learning,
mobility, self-direction, capacity for independent living, and economic self-
S Reflecting the person's need for a combination and sequence of special,
interdisciplinary, or generic care, treatment, or other services which are of lifelong
or extended duration and are individually planned and coordinated, (except that
such term, when applied to infants and young children means individuals from birth
to age 5, inclusive, who have substantial developmental delay or specific congenital
or acquired conditions with a high probability of resulting in developmental
disabilities if services are not provided).
The term developmental disability is a collective term used to describe a variety of
disabilities, including mental retardation, Down syndrome, autism, and cerebral palsy.
The NADDC, and other organizations (e.g., The Association for Retarded Citizens, ARC;
and The American Association for Mental Retardation, AAMR) advocate for people with
As previously mentioned there are approximately 7.2 million people with mental
retardation or a related developmental disability (ARC, 2004). During the 2001-2002,
academic year, approximately 26% of the students (ages 18-21 years) who received
special education services, had either mental retardation or autism (IDEA data, 2003).
Quality of Life
On behalf of individuals with developmental disabilities, organizations (like those
mentioned earlier) advocate that people with developmental disabilities have access to
(and opportunities to excel in) employment, education, and community living. In turn,
agencies strive to provide services that enhance these individual's quality of life.
Quality of life is a complex and abstract phenomenon. Despite being a complex
concept, the goal of many health care, human service, and education professions is to
enhance the quality of life of their clients (Iso-Ahola, 1980). The concept of quality of
life is used by these professions when planning and evaluating services for people with
disabilities (Dennis, Williams, Giangreco & Cloniger, 1993; Halpern, 1993). Several
studies have examined how the phenomenon of quality of life pertains to the lives of
individuals with developmental disabilities (Fisher, 1991; Goode, 1990; Malik, 1988;
Schalock, Harper, & Carver, 1981; Schalock, 1990a; Schalock et al, 2002). Traditionally,
leisure services have been used as a means to enhance the quality of life (Coyle, Kinney,
Riley & Shank, 1991; Iso-Ahola, 1980; Leitner & Leitner, 1996; Romsa, Bondy, &
Much of the quality of life literature (e.g. Dennis et al, 1993; Halpern, 1993; Heal
& Sigelman, 1990; Schalock et al., 2002) suggests that the phenomenon is conceptualized
in a variety of ways. People all have different ideas of what quality is. People define their
quality of life based on "expectations and hopes which are chiefly the result of the social
environment in which they live," and they revise these expectations based on "what they
have seen and heard others to have or to be" (Iso-Ahola, 1980, p. 392). Flanagan (1978)
examined 15 factors that defined quality of life. These 15 factors were grouped into 5
dimensions. Of these 15 factors, 6 areas (material comforts, health, work, active
recreation, learning, and creative expression) were highly correlated with overall quality
of life. Flanagan's work serves as the foundation for much of the work addressing the
issue of quality of life (Dennis et al., 1993; Fisher, 1991; Heal, Khoju & Rusch, 1997;
Iso-Ahola; Keith, 1990; Schalock, 1990b)
Others (Iso-Ahola, 1980; Dennis et al., 1993)have suggested that quality of life is
characterized by feelings of happiness, life satisfaction, and psychological well-being.
Halpem (1993) suggested that physical and material well-being, performance of adult
roles and personal fulfillment are three basic domains of quality of life of people with
disabilities. Recently, a panel of experts examined the conceptualization of quality of life
(Schalock, et al., 2002). Schalock et al.,(2002) stated that quality of life:
* Is composed of those same factors and relationships for people with intellectual
disabilities that are important to those without disabilities;
* Is experienced when a person's needs and wants are met and when one has the
opportunity to pursue life enrichment in major life settings;
* Has both subjective and objective components but is primarily the perception of the
individual that reflects the quality of life he/she experiences;
* Is based on individual needs, choices, and control; and
* Is a multidimensional construct influenced by personal and environmental factors,
such as intimate relationships, family life, friendships, work, neighborhood, city or
town of residence, housing, education, health, standard of living and the state of
one's nation. (p. 460)
Several models of quality of life consider leisure to be a domain of quality of life
(Flanagan 1978; Halpern, 1993; Heal et al, 1997; Stark & Goldsbury, 1990). If quality of
life is directly related to the amount of control a person has over his or her own life (Iso-
Ahola, 1980; Fisher, 1991; Wehmeyer & Schwartz, 1998), and if self-determination and
intrinsic motivation are concepts associated with leisure (Iso-Ahola, 1980, 1999; Mannell
& Kleiber, 1997; Wearing & Wearing, 1988;), then it seems that leisure and quality of
life would be a natural fit.
Like the concept of quality of life, leisure is a complex phenomenon. Many
definitions of leisure have been proposed over the years. Leisure has been viewed via a
temporal perspective. Most lay people perceive leisure as beingfree time. Brightbill
(1960) uses two measures of free time: time that is free from work, and time that is freely
chosen. A second definition of leisure is based on the notion that leisure is an experience
that can occur anywhere, at anytime. DeGrazia (1962) and Pieper (1963) embrace this
notion, by calling leisure a "state of mind." This state of mind involves feelings of
positive affect (enjoyment), and relative or perceived freedom. They postulate that
anytime we have these feelings, we can experience leisure. The classic definition of
leisure is also hard to measure. The classic definition of leisure, as postulated by
Aristotle, discusses the concept of schole (de Grazia). Arististole's definition is based on
a notion that leisure is a means by which we contemplate, we seek self-fulfillment, we
learn for the sake of learning (de Grazia, 1962). Other scholars (Godbey, 1990; Kelly,
1999) claim that leisure is one of life's domains; a social institution in and of itself, much
like school, work, family, and church. Rather than define leisure as an institution,
scholars such as Veblen (1899) postulates that leisure choices are related to social class,
race, and occupation. Veblen describes the bourgeois class as the leisure class. He
suggests that they embody the idea of freedom of choice, and are able to attend school
only if they want to, work if they want to, and play if they want to. Veblen uses the term
"conspicuous consumption" to describe the elaborate use of products to display the
leisure lifestyle of this class of people.
Leisure is a difficult concept to define, because it is a subjective experience
(Mannell, 1999). Leisure means different things to different people. Furthermore, the
leisure experience is a complex process, and as such is difficult to measure. Therefore,
Coalter (1999) suggests that it is time to attempt to understand the meaning of leisure.
Over the years, the subjective nature of the leisure experiences has been examined
among men and women and the young and the old. However, there little research has
been conducted regarding the subjective nature of the leisure experience of young adults
with developmental disabilities. Much of the leisure-related research pertaining to this
population focuses on recreation participation patterns (Hoge & Dattilo, 1995;
Richardson, Katz, & Koller, 1993; Sparrow & Mayne, 1990), recreation opportunities for
this population (Schleien & Werder, 1985), programming strategies (Burch, Reiss &
Bailey,1985; Dattilo, 1987), community integration (Pollingue & Cobb, 1986; Schleien,
Krotee, Mustonen, Kelterborn, & Schermer, 1987), leisure skills (Ashton-Shaeffer &
Kleiber, 1990; Crawford, 1986; Hawkins, 1991; McGuire & James, 1988; Schleien,
Cameron, Rynders, & Slick, 1988), social skill development (Dattilo & O'Keefe, 1992;
Green & Schleien, 1991; Kultgen & Hawkins, 1992), and enhancement of self-
determination (Dattilo & Barnett, 1985; Mahon & Bullock, 1992).
Malik and her colleagues (Malik, 1990; Malik, Ashton-Shaeffer & Kleiber, 1991),
however, used interviews with individuals with developmental disabilities to gather
information about their leisure interests. We know from the literature on self-
determination (e.g., Dattilo & Barnett; Mahon & Bullock) and leisure interests (Malik;
Malik et al.) that individuals with developmental disabilities are capable of making
decisions that reflect their needs, interests, wants, and desires. The question remains,
however, do these individuals have the opportunities to make and act upon leisure-related
decisions that affect their quality of life?
This study will build on the existing body of knowledge in developmental
disabilities and leisure. By understanding how individuals with developmental disabilities
perceive leisure experiences, service professionals will be able to enhance recreation and
leisure service-delivery practices.
The Dynamic Research Process
During the course of conducting this study, I often questioned what the overall
purpose of this project was. After weeks, months, and years of agonizing over this
question, it finally became clear that my purpose was to describe the leisure phenomenon
that I bear witness to, from the perspectives of the individuals with developmental
disabilities whom I have come to know over the years, and from the perspectives of their
families. Initially I set forth to examine the subjective nature of the leisure experience by
asking individuals with developmental disabilities about their leisure experiences. In
doing so, it was appropriate to adopt a naturalistic research perspective and a theoretical
framework that included grounded theory and symbolic interactionism. This research
perspective allows the data to guide the research process ultimately influencing the
purpose, research questions, and design. The dynamic nature of this whole research
process is told throughout the chapters that follow. This information is addressed as the
methods, findings, and implications are presented.
Initially, as I proposed this study, I adopted a theoretical framework based on two
principles: grounded theory and symbolic interactionism. Grounded theory was chosen to
allow for the data to guide the study. My humility prevented me from being an "all
knowing" scholar. My anti-authoritarian view of scholars allowed me to be open to the
world of the participants. It was my belief that the participants in my study would open
the door to their worlds, their perceptions, and their realities. They would be the
authorities on their own leisure experiences. I adopted a symbolic interactionist
perspective that valued the meaning that these "authorities" placed on their own
experiences and could help us understand how such meaning was formed.
One way to examine the subjective nature of the leisure experience for people with
disabilities is to ask them about their leisure experiences. A naturalistic research
perspective embraces the idea that "an emerging propositional or theoretical
understanding ... is grounded in the real lives and the real worlds of the persons and the
phenomenon being studied" (Bullock, 1993, p.29). To truly view the world from the
perspectives of those individuals who are being studied, the researcher cannot enter the
research process with pre-conceived ideas. The data need to speak. The process whereby
theory is "derived from the data" is known as grounded theory (Strauss & Corbin, 1998).
Strauss and Corbin proposed that grounded theory be used to generate new theories or
expand on existing theories. Strauss and Corbin (1998) said, "theorizing is the act of
constructing ... from data an explanatory scheme that systematically integrates various
concepts through statements of relationship ... it enables users to explain and predict
events thereby providing guides to action (p. 25).
Although the grounded theory approach stresses that the researcher enter a research
project without pre-conceived notions, the truth is that every research project begins with
a research question. These research questions are formulated based on the researcher's
experience and background. Strauss and Corbin suggest that these research questions
emerge from (a) suggested or assigned research problems, (b) technical or non-technical
literature, (c) personal and professional experience, and (d) the research itself. The same
information that guides our research questions also guides our initial data collection.
Although this information serves as the foundation for study, researchers are open to and
encourage additional data to emerge, thus broadening their perspective on a given
One perspective frequently adopted (as a theoretical rationale in the field of leisure
studies) to understand leisure experience and meaning is symbolic interactionism (Kelly,
1983, 1987; Rossman & Schlatter, 2000; Samdahl, 1986, 1988). According to Hewitt
(1991), symbolic interactionism "provides a distinctive way of understanding human
social conduct and group life" (p.5). Symbolic interactionism is a perspective that blends
the individualistic elements of psychology with the social influences of sociology
(Blumer, 1969; Hewitt, 1991; Mead, 1962). This perspective embraces the notion that
individuals are capable of internally developing meanings associated with external
influences. Central to symbolic interactionism is the concept of meaning proposed by
Mead (Blumer). Mead explains that meaning is the "relation between the gesture of a
given human organism and the subsequent behavior of this organism as indicated to
another human organism by that gesture" (p. 179). He further explains that meaning is
associated with social processes. Therefore, suggesting that as people meet others, they
form opinions based on this interaction.
Symbolic interactionism is based on the premises that (a) "human beings act
toward things on the basis of the meanings that the things have for them"; (b) "the
meaning of such things is derived from, or arises out of the social interaction that one has
with one's fellows," and (c) "these meanings are handled in, and modified through, an
interpretive process used by the person in dealing with the things he encounters"
(Blumer, p.2). Therefore, symbolic interactionism attempts to describe how people
interpret and describe their life experiences.
Numerous authors have suggested that leisure behavior may be examined via a
symbolic interactionist perspective (Kelly, 1983, 1987; Rossman & Schlatter, 2000;
Samdahl, 1986, 1988). A symbolic interactionist perspective embraces the idea that
leisure should be viewed as a "characteristic relationship between the individual and the
social milieu" (Samdahl, 1986, p. 22). Samdahl elaborates on this premise stating that
"leisure is a particular definition of the situation" (p. 22). Rossman and Schlatter
similarly state that "leisure is a special meaning attributed to specific social occasions
that are created by the individuals involved through interaction with objects in the
occasions" (p.23). According to Rossman and Schlatter, when using a symbolic
interactionist perspective, the leisure experience involves three phases: anticipation,
participation, and reflection. The leisure participant assigns meaning to the leisure objects
involved in each phase of the leisure experience. They further explain that these leisure
objects can be physical (e.g., equipment, supplies), social, or abstract (e.g., ideas,
Therefore, when examining leisure from a symbolic interactionist perspective,
emphasis is placed on understanding the meanings that individuals perceive during the
leisure experience. These meanings may be associated with definitions, motivations
and/or satisfactions. In essence, from a symbolic interactionist perspective, emphasis is
placed on analyzing the relationships between the research participant and the leisure
objects that he or she perceives to be involved with the leisure experience.
In the beginning, I set forth to understand the subjective nature of the leisure
experiences of young adults with developmental disabilities. In doing so, I aimed to a)
examine what leisure means to young adults with developmental disabilities, b)
investigate the motivations and constraints of these individuals regarding their leisure,
and c) determine the primary socialization agents that influence this experience (e.g.,
school, family, work).
Based on the purpose of the study stated above, the following questions were used
to guide the initial phases of this study.
1. What does leisure mean to young adults with developmental disabilities?
2. What role do primary socialization agents (i.e., parents, school) play in the leisure
of young adults with developmental disabilities?
3. What are the constraints on leisure experienced by young adults with
4. What are the facilitators of leisure for young adults with developmental
Limitations and Delimitations
Limitations are those things which potentially limit the internal validity of the
results of a study (Pyrczak & Bruce, 1998). In this study, limitations may be associated
with the cognitive impairments associated with the individual's developmental disability.
These impairments may have affected the research participants' ability to answer all
questions and actively engage in the interview process. An acquiescence scale was used
to screen the participants. I attended to the research participants' needs, prompting and
clarifying when appropriate. To prevent fatigue, the length of each interview was limited
to no more than 45 minutes with most lasting under 30 minutes. Multiple interviews with
the participants and their parents were also used to ensure the consistency and accuracy
of the responses. My personal subjectivities might also have influenced the internal
validity of this study. I attempted to expose most of my personal subjectivities as I
explained this project. I had external reviewers review the transcripts to verify themes
According to Pyrczak and Bruce, "a delimitation is a boundary to which the study
was deliberately confined." Delimitations also have implications pertaining to the
generalizability of the findings.This study was delimited to individuals with
developmental disabilities who lived in Prairie View and who met the criteria for this
study. Due to the nature of the community being studied, all participants were white
caucasian, were of an upper middle class socio-economic background, and all of these
participants had strong parental support. Most of these participants were participating in
organized recreation programs or had done so in the past. Therefore, this study is limited
in its generalizability. It is however, generalizable to similar popluations (i.e. those with
I wanted to know what leisure meant to people with developmental disabilities. I
predicated this study on a variety of concepts associated with the leisure experience (i.e.
motivations, constraints, satisfaction). I attempted to examine the role of special
education, in preparing individuals for post-school leisure.
Yet, as I set forth to determine how these concepts were perceived by individuals
with developmental disabilities, things changed. The leisure experience was broader in
scope than initially thought. Other socialization agents (i.e., friends, family) appeared to
be more influential than the schools. The overarching idea of quality of life, appeared to
be ever more important. The one thing that remained constant was that the study remains
focused on how young adults with developmental disabilities perceive their own leisure
The intent of this chapter is to provide an overview of literature that helps us
understand the overall phenomenon being studied. In Chapter 1, I described the concept
of quality of life, as it serves as the basis for the realm of services that individuals with
developmental disabilities receive. Quality of life has been a catalyst for the development
of philosophical positions such as community integration and normalization. As these
philosophies emerged, recreation and leisure services adopted them as guiding principles.
At the same time that the philosophies regarding the human services surfaced, the manner
in which leisure was being studied also evolved. Leisure studies shifted from examining
leisure as a philosophical construct to examining it as a construct that can be explained
from theories in the social sciences (Kelly & Freysinger, 2000). As this chapter
progresses, the evolution of human service principles and the conceptualization of leisure
is explored. The concept of leisure is described by examining the characteristics and the
nature of the leisure experience. Specific implications for individuals with developmental
disabilities are also addressed.
Quality of Life
While the concept of quality of life was introduced in Chapter 1, the implications of
this construct were not. In Chapter 1 the idea was presented that quality of life is
multifaceted concept with several dimensions (e.g. leisure, health, financial security). As
we explore the concept further, it can be noted that quality of life can be measured in
numerous ways (e.g., life satisfaction, economic impact, health indices). Another way to
examine the concept of quality of life is by looking at social movements and
philosophical principles founded on the idea that the quality of life of individuals with
developmental disabilities can be enhanced.
The concept of quality of life served as the impetus for movements associated with
deinstitutionalization, community integration, community adjustment and normalization
(Fisher, 1991; Heal, 1994; Hemming et al., 1981; Malik, 1988; Schalock, 1990c). During
deinstitutionalization, a movement in the 1960s and 1970s, individuals with disabilities
were moved from large state-run institutions to the community (Bullock & Mahon, 1997;
Nirje, 1994; Wolfensberger, 1994). The act of being in the same communities as people
without disabilities is considered to be community integration (Kleiber, Ashton-Shaeffer,
Malik, Lee, & Hood, 1990; Schleien, Ray & Green, 1997). According to Fisher, as
people are integrated into the mainstream of society, a process known as community
adjustment occurs, whereby individuals with disabilities adapt to the physical
environment, and learn to cope with societal attitudes. Bullock and Mahon suggest that
society's attitudes may change via the process of normalization, which encourages people
to treat individuals who have disabilities with the same respect that would be shown to
individuals who do not have disabilities. The evolution of these principles is based on the
idea that the quality of life of individuals in institutions was horrendous.
As mentioned previously, deinstitutionalization refers to an era when individuals
with disabilities were moved from large state-run institutions to the community (Bullock
& Mahon; Nirje; Wolfensberger). This idea emerged as people became aware of
conditions in these institutions via photographs (Blatt & Kaplan, 1966), investigative
journalism (Terry, 1968), and the written word (Bogdan & Taylor, 1982, preface). The
following is how Bogdan and Taylor described their encounter with these institutions.
We were taken first to the "model living units" housing young children with rare
conditions and deformed bodies. Amid expensive equipment and busy aides, thirty,
perhaps forty, unattended children lay helplessly in seemingly endless rows of
cribs. "Society doesn't want to care for these children," commented one aide to an
observer. "We do the best with what we've got."
We were also profoundly struck by the wards full of older men and women. There
were several coloring books strewn about. A television encased in wire mesh sat
high on one wall. Several of the people were rocking. Most sat quietly, just passing
the time. There were no obvious signs of abuse or neglect. Yet the atmosphere was
one of boredom and depression, of wasted lives and lost opportunities.
With mixed emotions we toured the locked units, the institutions' "back wards."
Our anxiety heightened as we approached the wards for "severely and profoundly
retarded, aggressive, ambulatory, young adult males." The combined smells of
antiseptic and excrement were overpowering, Haunting screams filled the air. An
overwhelming desire to flee accompanied the turning of the key to the locked ward
door. And there they were, an anonymous mass of unwanted humanity. The images
are unforgettable: some nude, but most in baggy institutional garb; several in
straightjackets or tied to long wooden benches; all with close-cropped hair; many
with scars; some hunched over; some drooling (preface).
As people saw the conditions in these institutions, advocacy groups were formed,
legislation was passed, and efforts were made to improve the quality of life of individuals
with developmental disabilities (Schalock & Braddock, 2002). People with
developmental disabilities moved from the institutions to their home communities. They
were given the opportunities to attend school and otherwise partake in other community
activities. As people left the institutions to live in the communities, efforts were made to
aid in this transition. These efforts fell under the auspices of the concept known as
Community integration involves two components: physical integration and social
integration (Kleiber et al., 1990; Smith, Austin & Kennedy, 1996). According to Kleiber
and colleagues physical integration involves placing people in environments that foster
opportunities for social interaction. They define social integration as the act of social
interaction. Initially, the physical act of integration merely meant providing opportunities
within local communities. As such, special schools, special recreation programs and
special workshops were created.
Individuals with disabilities were physically living in the community; but they
were not learning, working or playing in the same settings as individuals without
disabilities. Efforts were made to physically bring individuals with disabilities into the
same schools, workplaces, and recreation centers as people without disabilities. The
phenomenon known as "mainstreaming" was conceptualized to define these efforts. The
mainstreaming efforts led to special self-contained classrooms in the neighborhood
schools, and led to adapted aquatics programs in the neighborhood pools.
But still, individuals with and without disabilities lived their lives independent of
one another. As such, the idea of inclusion was brought to the forefront. Inclusion
promotes interaction among individuals with and without disabilities in the world of
individuals without disabilities. Several questions remain, however. Do integration,
mainstreaming and/or inclusion actually address the idea of quality of life? How are
people affected by these practices? To answer these questions, the concept of community
adjustment emerged. Community adjustment goes beyond integration by involving
personal, environmental and psychosocial variables (Burchard, 1994).
Community adjustment is a complex idea. It involves an awareness of the self,
(Burchard, 1994; Fisher, 1991; Kleiber et al., 1990), an awareness of others (Burchard;
Fisher; Halpern, 1985; Kleiber et al.) and an awareness of the environment (Burchard;
Halpem). According to Fisher, an awareness of self involves how an individual copes
with one's disability. Kleiber et al suggest that an individual's ability to cope with his or
her disability may manifest itself via feelings of self-worth and/or self-esteem and his or
her general mood. In the realm of social adjustment they allude to the degree of
satisfaction associated within the context of their interactions. Fisher suggests that an
awareness of others involves understanding how others perceive disability. Halpern states
that environmental adjustment involves adapting to the conditions associated with
residential living and employment (Halpern, 1985).
The outcome of community adjustment involves overcoming the obstacles that a
person with a disability encounters while meeting normal challenges associated with
human development (Fisher, 1991). As such, human service agencies aim to promote
independent functioning and a normalized lifestyle (Burchard, 1994).
As Burchard suggests, normalization is a guiding principle used to develop
community programs post deinstitutionalization. Much has been written on the
normalization principle over the years, yet few of these studies actually refer to the
origins of the principle (Nirje, 1994). I could merely describe normalization in my own
words as a process whereby individuals with disabilities are treated in the same manner
as those without disabilities. I could discuss the idea of age-appropriate programming and
least restrictive environment. But, I would be doing a great disservice to the principle as a
whole. Normalization may be one of the guiding principles in this study; as such I feel
the historical evolution of this principle is important.
In 1959, a Danish law was promoted by Bank-Mikkelsen. The preamble to this
law read "to let the mentally retarded obtain an existence as close to normal as possible"
(Perrin, 1994). In 1967, Nirje coined the phrase "the normalization principle" (Nirje,
1994). According to Nirje:
the normalization principle means that you act right when you make available to all
persons with intellectual or other impairments or disabilities those patterns of life
and conditions of everyday living that are as close as possible to, or indeed the
same as, the regular circumstances and ways of life of their communities and their
He believes that all people with disabilities should have access to:
1. A normal rhythm of the day.
2. A normal rhythm of the week.
3. A normal rhythm of the year.
4. The normal experiences of the life cycle.
5. Normal respect for the individual and the right to self-determination.
6. The normal sexual patterns of their culture.
7. The normal economic patterns and rights of their society.
8. The normal environment patterns and standards in their community.
Nirje founded these principles upon observing the lives of the individuals with
disabilities in Sweden. According to Perrin, Bank-Mikkelsen described normalization as
the 'acceptance of the mentally retarded i/ ih their handicap, and offering them the same
conditions as are offered other citizens'. He further suggests that "it means making
normal housing, working and leisure conditions" (p. 183). Eventually, the normalization
principle transcended the boundaries of Sweden (i.e. United Kingdom's Ordinary Life
Movement) and made its way to the United States where Wolf Wolfensberger
According to Yates (1994), Wolfensberger defined the principle of Normalization
The use of culturally normative means (techniques, methods, tools) to enable
people's life conditions (income, housing, jobs, recreation) to be at least as good as
those of average citizens. Culturally normative is not used here to mean the
average, the normal, the mean, but rather, in the sense of what's broadly accepted, a
range of what is expectable and ordinary, where people would not raise their
eyebrows to encounter. Moreover, culturally normative means would be called in to
play to, as much as possible, enhance and support people's behavior, appearance,
experiences, status, and reputation in their own eyes and in the eyes of others (p.
Yates suggested that Wolfensberger also defined Normalization as:
The utilization of means that are culturally normative as possible in order to
establish, enable or support behaviors, appearances, and interpretations that
themselves are as culturally normative as possible (p. 118).
Wolfensberger's conceptualization of the normalization principle eventually evolved into
a concept known as Social Role Valorization (SRV). According to Thomas and
SRV proposes that people who hold valued roles in society are more apt than
people in devalued roles to be accorded 'the good things in life' by their society.
Consequently, if people who are devalued by their society, or who are at risk of
being devalued, are to be given the good things of life, then they should be helped
to as much as possible fill roles that are highly valued in society. Otherwise they
will probably be very badly treated (p. 126).
Several principles are the basis of SRV, the first pertain to the concept of social
roles. Thomas and Wolfensberger suggest that our social roles reflect "behaviors,
privileges, duties and responsibilities" which are "widely understood and recognized
within society." They further postulate that these social roles characterize a "particular
position within a social system." Thomas and Wolfensberger imply that these social roles
fall along a continuum of perceived value and occur within different domains (e.g.:
relationships, work, education, sports, community participation, religious, and residence-
related). They also state that these roles may be negative or positive, narrow or broad.
SRV is based on assumptions that humans by their nature value and devalue other
people. They suggest that social image and personal competency are two factors that may
enhance social role value.
These principles of deinstitutionalization, community integration, normalization
and social role valorization all have been designed to enhance the quality of life of
individuals with disabilities by including them in society. Furthermore, the aim of these
efforts was to make society more accepting of individuals with disabilities.
Implications for Recreation Service Delivery
As these principles have evolved, the human service fields (i.e.: therapeutic
recreation and special education) have adopted them via service delivery. Concepts like
least restrictive environment, mainstreaming and inclusion are rooted in these principles.
While these concepts may have affected the field of special education in the 1970s
because of legislation (e.g.: PL 94-142), the origins of these principles include recreation
As mentioned previously, the normalization principle was specifically applied to
the recreation and leisure domains of life. Perrin (1994) reported that one purpose of the
Scandinavian normalization movement was to make normal "leisure conditions." Nirje
(1994) reports using his experiences in Sweden's residential and recreational facilities to
develop the principle. Subsequently, Nirje credits Elliot Avedon, a founding father of
therapeutic recreation, for introducing recreation to Sweden. But, why were recreation
and leisure important in the beginning? Perhaps, it is because as Godbey (1990) suggests
leisure is part of the "rhythm of daily life" (p.43). He defends this idea by using time as a
measure of leisure.
The principles of community integration and normalization continue to guide the
field of therapeutic recreation (Bullock & Mahon, 1997; Smith, Austin & Kennedy, 1996;
Schleien, Ray & Green, 1997). These principles serve as the foundation for therapeutic
recreation practice (i.e. Austin & Crawford, 1991; Bullock & Mahon; Carter, Van Andel
& Robb, 1995; Schleien, Ray & Green; Smith, Austin & Kennedy). As such, knowledge
of these basic principles is considered to be a minimum competency expected of
therapeutic recreation professionals (Kinney & Wittman, 1997; NCTRC, 1997).
Likewise, these principles guide research projects within the field of therapeutic
recreation. (Devine & Dattilo, 2000; Devine & Lashua, 2002; Germ & Schleien, 1997;
Hayden, Soulen, Schleien, & Tabourne, 1996; Kleiber et al.,1990; Miller et al., 2002;
Richardson, Wilson, Wetherald & Peters, 1987; Schleien, Cameron, et al., 1988; Schleien
et al, 1987; Schleien, Rynders & Mustonen,1988; Schleien & Werder, 1985; Wachter &
McGowan, 2002;Wilhite & Keller, 1996).
The most evident implication for therapeutic recreation practice is inclusive
recreation. Inclusive recreation involves including individuals with disabilities in those
recreation programs designed for individuals without disabilities (Bullock & Mahon;
Dattilo, 2002a; Schleien, Ray & Green; Smith, Austin & Kennedy). Smith, Austin and
Kennedy suggest that recreation service delivery needs to address elements of society
(e.g.: architectural barriers and societal attitudes) which may exclude individuals with
disabilities from full participation. Bullock and Mahon emphasize the development of an
accepting community recognizes individuals with disabilities as "valued members" and
"active participants" in "typical environments." Inclusive recreation can play a role in
helping society value individuals with disabilities (Dattilo; Schleien, Ray & Green).
Society will value individuals with disabilities when accommodations are made,
participation is encouraged, the unique talents of each individual are recognized and
everyone's choices are respected (Dattilo, 2002; Schleien, Germ & McAvoy, 1996).
The field of leisure studies also addresses "inclusion" from the individualistic
perspective via the identification of specific benefits obtained through inclusive programs
(Anderson, Schleien, McAvoy, Lais & Seligman, 1997) and through program
implementation (Schleien, Ray & Green; 1997). Schleien et al point out that immediate
inclusion in recreation programs may not be appropriate for all individuals. And so, from
an individualistic perspective, inclusive leisure services are based on each individual's
needs and tends to celebrate diversity.
For the most part these studies have examined the desired outcomes of these
inclusive recreation programs. As such, these studies have determined best practices for
inclusive programming by examining factors that influence successful integration
(Hayden et al., 1996; Wilhite & Keller, 1996). Research related to the best practices
associated with inclusive programming describes the role of the program staff (Germ &
Schleien, 1997; Wachter & McGowan, 2002) as well as the role of the participants
(Devine & Lashua, 2002; Germ & Schleien, 1997) in such programs. Some studies
examine the role of inclusive programming on social acceptance (Devine & Lashua,
2002; Miller et al., 2002).
Despite, references to the key principle of normalization, few studies actually
explore the role of normalization in relation to the leisure of the "normal" society. The
next section of this chapter describes what we know about leisure for people without
Leisure and the "Normal" Society
In this section, we are going to examine the concept of leisure as a whole. While
the philosophical and definitional approaches described in Chapter 1 will not be explored
here, it is worth repeating that leisure can be defined in a myriad of different ways. While
there is little agreement related to the philosophical and definitional understanding of
leisure, there is much agreement as to certain characteristics of leisure (e.g: freedom and
positive feelings). Once the characteristics of leisure have been described, the existential
and social nature of the leisure experience will be discussed.
Characteristics of Leisure
Two generally agreed upon characteristics of leisure include some degree of
freedom and some positive feelings (Godbey, 1990; Kelly, 1990; Kleiber, 1999). As
mentioned previously, the idea of freedom can be perceived or it can be relative. The
concept of freedom involves the idea that an individual is capable of making choices and
that an individual chooses to engage in leisure. Some positive feelings are also associated
with leisure. Godbey (1990) uses the terms "personally pleasing" and "intuitively
worthwhile" to describe the later characteristic. Kelly, on the other hand, uses the term
"intrinsic satisfaction." And Kleiber uses the term "preferred experience." Regardless of
the terms used, the ideas remain the same. Therefore these characteristics will be
explored in further detail here.
As mentioned previously, the concept of freedom seems to be central to the notion
of leisure (Godbey, 1990; Iso-Ahola, 1999; Kelly, 1983, 1987, 1990; Kleiber; Neulinger,
1981). Freedom may be perceived, as Neulinger suggests, or it may be relative. Perceived
freedom is conceived in the mind of the person through his or her feelings. Perceived
freedom can be exemplified via the following questions. Does the personfeel free to
participate in the experience? Does the personfeel that he or she may make choices about
the experience? Kelly (1990) describes the freedom associated with leisure as being
relative, stating "it is more than just a feeling" (p.22). The concept of relative freedom
depends on how society constructs the notion of freedom. For example, if a person is in a
prison, society might say that the person does not have freedom because there are bars on
the windows and a structured schedule dictating how that person can experience life.
The construct of freedom involves the element of choice implying that leisure is a
freely chosen activity (Iso-Ahola, 1999; Mannell & Kleiber, 1997; Wearing & Wearing,
1988). A concept synonymous with choice is self-determination. Self-determination
describes our ability to make and to act on our own choices (Deci & Ryan, 1980). It has
been suggested that as people make choices about an activity he or she is more likely to
participate in that activity for that activity's sake (Iso-Ahola; Kleiber 1999; Mannell &
Kleiber). Iso-Ahola insinuates that as people have more control over an activity
pleasurable feelings soon follow. Dattilo and Kleiber (1993) suggest that self-
determination and intrinsic motivation are essential to enjoyment
Happiness! Enjoyment! Fun! There are so many words that can describe positive
feelings. These positive feelings are often associated with leisure (Godbey, 1990; Kelly;
Kleiber). Csikszentmihalyi stated, "happiness is the prototype of the positive emotions"
(1997a, p.18). Happiness is the outcome of an experience which Csikszentmihalyi calls
flow (1975, 1990, 1997a, 1997b). Flow occurs when there is a balance between a
person's skill level and the level of challenge within a given task (Csikszentmihalyi 1975,
1990, 1997a, 1997b). When a person is in flow, he or she is completely focused, his or
her self-consciousness disappears, and his or her sense of time is distorted
(Csikszentmihalyi, 1997b). According to Csikszentmihalyi, "flow is generally reported
when a person is doing his or her favorite activity" (1997a, p.33). Several studies have
linked leisure activities to the flow experience (Ellis, Voelkl, & Morris, 1994; Voelkl &
Ellis, 1998; Jones et al., 2000).
And thus, freedom and positive feelings are characteristics associated with the
leisure experiences. If my participants do not understand the terms, recreation and leisure,
as was the case in Malik (1990), they might have experiences marked by these
The Nature of the Leisure Experience
The nature of the leisure experience is complex. In order to understand the nature
of the leisure experience we need to know if the concept actually exists. Kelly (1987,
1999) explains leisure's existence via existential sociology. He implies that the nature of
leisure is made up of two essential components or truths:
* Leisure is an experience.
* This experience is dependent upon social interaction.
This section describes how we know that leisure is an experience. Multiple facets
and processes associated with the leisure experience will be discussed. This section will
also elaborate on the social influences associated with the leisure experience.
Leisure as Experience
According to Kelly (1987), we know that leisure is an experience because leisure is
a decision, a creation, a process that evolves and changes with situations. There are
several ways that we can determine the existence of leisure. Kelly further explains that
leisure produces meaning and that leisure is an act with its own "history, emotion,
interpretation, episodic development and telos" (p.50). He elaborates stating that we
know that it is an experience because it exists within a social context. Attempts to
operationalize this experience have emerged as the field of leisure studies evolved.
The existential properties of this experience include an understanding of how the
construct evolves and changes over the course of one's life. Another way we can verify
the existence of leisure is to compare the construct to a similar dimension of life such as
work. A third method of determining the existence of leisure is to explore how it
operationalized. Therefore, in this section, the leisure experience will be explored via the
life course, work, participation, satisfaction and meaning.
Life Course. One way that we can determine the existence of leisure is to
determine the presence of this construct at different periods throughout life. A
developmental approach is traditionally used to examine leisure in the context of different
phases of life. Many leisure scholars have written about leisure and the life course (Kelly
1990, 1987; Kleiber, 1999; Mannell & Kleiber 1997; Rapoport and Rapoport, 1975).
Kleiber describes how development influences the manner in which individuals
experience leisure as well as how leisure impacts person's development. He describes the
leisure experience as having four properties that relate to human development. According
to Kleiber, leisure can be:
* Derivative the result of life experience.
* Adjustive a way to cope with our life experiences.
* Generative a means to promote the growth process
* Maladaptive a mechanism that hinders development.
The interaction between leisure and human development occurs at all phases in our
life. It may occur when we are young and when we are old. As we age and experience
different life events the role of leisure in our lives takes on different meanings. Literature
suggests that as people age, they cease, replace or continue participating in certain leisure
activities (Iso-Ahola, Jackson & Dunn, 1994).
We can examine changes and continuity, which occur throughout one's life in a
myriad of ways. Kelly (1987) identifies five traditional methods of examining
developmental change: He suggests that the family life cycle approach studies the role of
family in various life stages. The life span approach was defined by Kelly as being
focused on age-related change. Whereas, he defined the life course approach as being
focused on stages linked by transitions. When describing the crisis model, Kelly
emphasizes struggles that occur at different stages of life. And, the developmental model
is described by him as involving task achievement at various stages in life.
In this study, we are examining the period of life in which people are young adults.
This period of life is marked as the time in which individuals leave their parent's home,
but before they establish a family of their own (Rapoport and Rapoport, 1975).
According to Kelly, this transition period is marked by a life stage when a person is
challenged to embrace a life that is self-directed, while becoming less connected to his or
her family. Young adults are faced with the crises of finding their own identities while
attempting to establish intimate relationships. This struggle may result in role confusion
or social isolation (Erikson, 1982). Leisure can assist people in successfully making the
transition from adolescence to adulthood (Kleiber, 1999; Mannell & Kleiber, 1997).
During this period of life many changes occur regarding our leisure interests. Mannell
and Kleiber suggest that this is the time when the leisure activities that we enjoyed as a
child mesh with the leisure interests that we enjoy in adulthood.
As we age, the institutions that exist in our lives define us (e.g. school and work).
For example, children ages birth to five are often called "pre-schoolers'; next, we group
children as those in either elementary or secondary school, then there is life after school.
Similarly, the dimension of work can be used to define us. It is often said that "play is
child's work." In high school, students may identify with the camp, pool, grocery store,
or gas station that they worked at. After high school parents ask "what are you going to
do with your life" referring to the occupational choices that young adults pursue. Adults
are often defined by their occupation (i.e. teacher, lawyer, doctor, therapist). When a
person retires, the lack of work in his or her life allows them to form a new identity (e.g.
snowbird as in the case of older adults who migrate to warmer climates for part of the
Work. Since leisure is like other domains of life (e.g. school and work) from a
developmental perspective, the existence of leisure can be established by comparing
leisure to work. The relationship between leisure and work has long been examined
(Godbey, 1990; Kelly, 1990,1999; Mannell & Reid, 1999)). The relationship can be
measured temporally or it can be studied attitudinally. The temporal perspective measures
work and leisure using time (Kelly, 1990; Brightbill, 1960; for examples see Hunnicut,
1989; Schor, 1991). Whereas, the attitudinal perspective examines work and leisure
using constructs such as satisfaction and enjoyment (Csikszentmihalyi 1975, 1990, 1997).
Regardless of the perspective used to study this relationship, it is evident that this
relationship is complex.
If leisure is defined as "time that is free from necessity" and if work is defined as
"accomplishing something that needs to be done", one would expect this relationship to
consist of two dimensions which contrast with each other (Kelly, 1990). Yet, if we
examine actual activities that we consider to be leisure such as gardening, we see that
there may be some necessity. Likewise, there are aspects of work that are enjoyable.
As we look at the construct of work for a moment, we see that work is multi-
faceted. We can define work by the tasks we do and perform. We can describe work by
the amount of money and/or amount of power that comes from the occupations that we
choose. The tasks, the money, the structure and the environment can satisfy us or we can
look for something better. In some cases, we might not be in it for the money. We might
be fulfilled knowing that we are making a difference in people's lives. Therefore
exploring the concepts of participation, satisfaction and meaning can operationalize the
experience of work. Such factors are also examined as we operationalize the experience
Operationalizing the leisure experience. Mannell describes three ways that
leisure scholars have traditionally examined the subjective nature of the leisure
experience. These three perspectives include the definitional approach, the immediate
conscious experience approach, and the post-hoc satisfaction approach (Mannell, 1999;
Mannell & Kleiber, 1997; Mannell & Iso-Ahola, 1987).
The definitional approach involves "identifying the attributes and meanings that
people must perceive as being associated with an activity or setting for it to be construed
or defined as leisure" (Mannell, 1999, p.235). The immediate conscious experience
approach involves "measuring the quality or texture of what people experience during
leisure and examining the impact of the physical and social setting as well as personality
factors on experience" (p.237). The post-hoc satisfaction approach "is an 'after the fact'
assessment or experiential consequence of an earlier involvement or set of involvements"
(p.238). These three approaches to studying the subjective nature of the leisure
experience suggest that the leisure experience is composed of three facets: participation,
satisfaction and meaning. Participation describes what exactly we do and how we go
about doing it. Meaning refers to how we define each of these experiences by examining
the why, where, when and with whom we do or do not do things. We have needs, wants,
and desires in all areas of our life, satisfaction describes the degree to which these needs,
wants, and desires are met.
Participation. As mentioned previously, leisure participation involves the
behaviors associated with being engaged in an activity that is freely chosen and
enjoyable. When attempting to operationalize leisure participation, scholars examine
specific activity involvement, motivations, and constraints.
Specific Activity Involvement:is measured by examining those activities that
people find enjoyable. This construct can first be examined by looking at the types of
activities in which people participate (burlingame & Blascho, 2002 ). When examining
specific activity involvement, diversity of interests along with frequency and duration of
participation are examined. A person may spend 20 hours a week playing rugby, but do
they do anything else? Another person may spend the same 20 hours at dance class,
riding a bike on trails, eating out with friends and watching a movie. When attempting to
examine participation patterns, additional factors help explain why people engage in
Motivation: Motivation theories describe why people engage in certain behaviors
(Deci & Ryan, 1985, p.3). In the field of leisure studies the concept of motivation has
been addressed in numerous ways (Beard & Ragheb, 1983; Iso-Ahola, 1980, 1989;
Mannell & Kleiber, 1997; Neulinger, 1981; Tinsley, Barrett & Kass, 1977). Theories of
motivation can be based on needs, preferences, or a combination of the two.
One of the earliest ideas of motivation was Maslow's (1954) hierarchy of needs.
According to Maslow, human beings strive to ensure that certain physical, social, and
psychological needs are met. Additionally leisure scholars have postulated needs based
theories of motivation (Iso-Ahola, 1980; Mannell & Kleiber)
As motivation theories evolved many began to examine needs based on leisure
preferences (Tinsley, Barrett & Kass; Beard & Ragheb, 1983). Tinsley, Barrett and Kass
identified a list of 45 needs associated with leisure activities. They examined whether
these needs were present in five activities: watching TV, reading, attending plays,
bicycling, and drinking. According to Beard and Ragheb, there are four reasons why
people are motivated to participate in leisure activities. They suggest that the first type of
motivation is intellectual, which pertains to wanting to participate in an activity because
an individual has a need to learn, to explore, to discover, to create, or to imagine. Their
second form of motivation is social, which refers to the need to develop friendships and
esteem for others. The third form of motivation described by Beard and Ragheb is called
competency or mastery. Examples of competency and/or mastery motivation include
participating in an activity for the purposes of achieving, mastering, challenging, or
competing. The last type of leisure motivation that Beard and Ragheb mention is
stimulus/avoidance. This type of motivation occurs when people avoid social contacts,
seek solitude, and seek to rest and unwind themselves.
Neulinger suggests that the three levels of motivations associated with the leisure
experience include: extrinsic motivation, intrinsic motivation and a combination of the
intrinsic and extrinsic motivations. Extrinsic motivation involves participation in an
activity because of "some payoff from the activity" (Neulinger, 1981, p. 17). He suggests
that intrinsic motivation involves participation in an activity because of the activity itself
Although there are several motivational theories, the field of leisure studies has generally
focused on the theories of intrinsic motivation and self-determination (Iso-Ahola, 1980,
1989; Mannell & Kleiber, 1997, Neulinger).
While intrinsic motivation assumes "that people are active organisms working to
master their internal and external environments" (Deci & Ryan, 1980, p. 35) self-
determination is "the capacity to choose and to have those choices rather than
reinforcement contingencies, drives or any other forces or pressures, be the determinants
of one's actions"(p. 38). Intrinsic motivation and self-determination are frequently
mentioned in the literature as integral components of the leisure experience (Iso-Ahola,
1999; Mannell & Kleiber, 1997; Wearing & Wearing, 1988; These concepts relate to the
leisure experience, since "leisure means full autonomy, freedom and control" (Iso-Ahola,
p.39). He illustrates this idea, stating "one participates in an activity because he or she
finds it intrinsically interesting, for its own sake, out of sheer pleasure and enjoyment"
There are many times when we all want to do things, but do not. The reasons why
we do not engage in activities that we would like to has been described by the idea of
constraints. Leisure constraints are those things that prevent people from participating in
the activities that they choose (Crawford, Jackson, & Godbey, 1991; Jackson, Crawford
& Godbey, 1993; Raymore, Godbey, Crawford & von Eye, 1993). Crawford et al.,
suggest that there are three types of constraints: intrapersonal, interpersonal, and
Intrapersonal constraints are those factors within a person that interfere with an
individual's ability to act on their preferences (Crawford & Godbey, 1987). According to
Raymore et al., intrapersonal constraints include issues related to: a person's
psychological health (i.e. stress, anxiety or depression), his or her personal values; and
his or her perceived competency. Interpersonal constraints involve situations when a
person does not participate in an activity because of his or her interaction with other
people. They suggest that an example of an interpersonal constraint would be if
individuals do not participate in an activity because they could not find someone to do
that activity with them. Structural constraints are those external factors such as financial
resources, time and opportunity which that interfere between a person's leisure
preferences and his or her participation (Crawford & Godbey, 1987; Raymore et al,
1993). Intrapersonal constraints directly affect leisure preferences, interpersonal
constraints affect the linkage between leisure preferences and interpersonal compatibility
and structural constraints affect the linkage between interpersonal compatibility and the
level of participation. Samdahl and Jekubovich (1997) found that these types of leisure
constraints do indeed occur in the leisure experiences of adults who were 30 to 65 years
old. They also found that there are other factors that influence leisure participation. Shaw,
Bonen & McCabe (1991) examined how the presence of 11 different barriers related to
levels of participation in 35 physical activities among 18,293 Canadians aged 18-69.
Their findings challenge the assertion that constraints reduce participation. They suggest
that societal factors such as gender and class may be more influential than inter and
structural constraints per se.
Specific activity involvement, motivations and constraints are ways that leisure
scholars can examine the idea of leisure participation. While leisure participation
examines the act of engaging in leisure activities, the concept of leisure satisfaction
examines the outcomes of such engagement.
Leisure Satisfaction. Leisure satisfaction is measured once a person engages in a
leisure activity. According to Mannell, (1989) leisure satisfaction can also be
conceptualized as molecular, focusing on a few specific activities; or molar, that is
exploring the overall phenomena of leisure. He suggests that the concept of leisure
satisfaction can be used to determine whether preferences, expectations and needs were
met during the participation phase of the leisure experience. Beard and Ragheb (1980)
define leisure satisfaction "as the positive perceptions or feelings which an individual
forms, elicits, or gains as the result of engaging in leisure activities and choices" (p.22).
Leisure satisfaction measures are often related to the concept of motivation
discussed previously (Mannell; Beard & Ragheb). Ragheb and Tate (1993) suggest that
motivation can either lead to participation, or it can directly influence satisfaction.
According to Beard and Ragheb, there are six types of leisure satisfaction: psychological,
educational, social, relaxational, physiological, and aesthetic. They describe
psychological satisfaction as pertaining to the satisfaction that is the result of the leisure
experience: being intrinsically motivated, fulfilling self-actualization needs, instilling a
sense of accomplishment, and/or providing an outlet for self-expression. According to
Beard and Ragheb, if an activity provides for intellectual stimulation; allows participants
to seek new experiences, and/or satisfies the participant's curiosities, that activity is a
source of educational satisfaction. They state that social satisfaction occurs when
participants are able to maintain and develop freely chosen social relationships.
Satisfaction which meets the needs associated with rest, relaxation and stress reduction is
called relaxational, according to Beard and Ragheb. They believe that if a person is
challenged and restored physically, if he or she develops physical fitness and enhances
health; or if his or her physiological needs are met, that he or she is physiologically
satisfied. Finally, they imply that aesthetic satisfaction occurs if the physical environment
As mentioned previously, the different types of satisfaction identified by Beard and
Ragheb (1980) are similar to the different types of motivation (Beard & Ragheb, 1983).
For example, a person may be psychologically satisfied if he or she is motivated
intellectually. Likewise, people may be both motivated and satisfied by their social
interactions. Someone motivated by stimulus/avoidance may be satisfied via relaxational
satisfaction. And a person motivated by competence and mastery might experience
Another component used to understand the leisure experience is leisure attitude
(Ragheb & Tate, 1993; Ragheb & Beard, 1982). According to Ragheb and Tate, attitude
has two components -- one cognitive, the other affective. Ragheb and Beard suggest that
the cognitive component of attitude is "affected by our knowledge and beliefs about
leisure activities" (p. 156). They state that the affective component of attitude relates to
the person's likes, dislikes, and other feelings about a given leisure activity. There is a
direct relationship between the cognitive component of attitude and motivation (Ragheb
& Tate). Whereas the cognitive component of the model is only directly related to
motivation, Ragheb and Tate believe the affective component is directly related to
motivation, participation and satisfaction.
While satisfaction examines an individual's perception of the outcomes associated
with leisure activities, leisure meaning explores how a person perceives the leisure
experience and is used to determine how a person values such experiences.
Leisure Meaning_ Therefore, according to Mannell (1999) the third component of
the leisure experience is leisure meaning. Kleiber (1999) defines leisure meaning as
"what people think of when asked about the feelings they associate with it" (p.3). Lawton
(1993) describes two types of leisure meaning that have been explored in leisure studies.
He uses the term denotative meaning to describe "observable properties of an object, that
is, physical characteristics, uses, history, and so on" (p.25). As such, Lawton suggests
that leisure studies have examined the denotative meaning of leisure by grouping types of
activities. He uses the term connotative meaning when referring "to the more abstract,
affective and linguistic characteristics of the object" (p.25). Lawton suggests that leisure
studies have examined the connotative meaning of leisure when dimensions of the leisure
experience (e.g. leisure attitude and leisure satisfaction) have been explored.
Furthermore, Lawton postulates three categories of leisure meaning: experiential,
developmental and social. He suggests that experiential leisure meanings embrace
concepts such as: intrinsic satisfaction, solitude, diversion, and relaxation. He states that
the developmental meanings use concepts such as intellectual challenge, personal
competence, health, expression and personal development, and creativity. And Lawton
says that social leisure meanings include concepts such as social interaction, social status,
and service. Similarly, Kleiber suggests that ideas such as: perception of freedom or
choice, intrinsic motivation, freedom from evaluation, relaxation, and enjoyment are
reflected in the research on leisure meaning.
Shaw (1985) examines the meaning of leisure in everyday life. When reviewing the
literature she identifies three ways that leisure meaning had been explored. The first
method looks at how people define leisure. The second method examines the values and
satisfactions associated with leisure. The third approach examines "factors believed to be
associated with leisure" (e.g. freedom and motivation). Shaw chooses to conduct an
exploratory study of leisure and tests "perpetual dimensions" (e.g. enjoyment, relaxation,
effortless, satisfaction, free choice, personal development, intrinsic motivation,
spontaneity, no evaluation, and social interaction) identified in the literature. Using
interviews and time diary procedures, she compares the respondent's perceptions in
leisure and non-leisure activities. The focus of her article was to define leisure. Shaw uses
a symbolic interactionist paradigm, to examine "the process by which an individual in a
given situation comes to define that situation as leisure or as work, or as some other
category of experience" (p.5). Using this perspective she was "primarily concerned with
attitudes toward and perceptions of a situation rather than with the objective situation
conditions in terms of understanding definitions and meanings" (p.5).
And so, the leisure experience is a complex phenomenon comprised of three facets
participation, satisfaction, and meaning. Since a human being is capable of engaging in
such behavior and since humans are capable of assigning meaning to this experience, the
idea of leisure must exist. This idea is present throughout the life course and is similar to
other domains of life. But, according to Kelly (1999) the nature of leisure is not merely
existential. It requires some interaction with others.
The Social Nature of Leisure
The social nature of leisure has long been recognized (Avedon, 1974; Kelly, 1999;
Samdahl, 1992). Leisure is prevalent in the presence of family and friends (Samdahl,
1992; Shaw, 1984). As Kelly explains the social nature of the leisure experience is used
to help define the leisure experience using the meanings associated with our social
interactions. Eight social interaction patterns occur within our recreational pursuits
(Avedon, 1974; Peterson & Gunn, 1984; Peterson & Stumbo, 2000; Stumbo & Peterson,
2004). These social interaction patterns describe those activities that are done with others
and those which are performed in the absence of others. A description of the eight social
interaction patterns identified by Avedon follows:
* Intra-individual activities occur within the mind of the participant.
* Extra-individual activities occur between an individual and an object.
* Aggregate activities occur between an individual and an object while other
individuals perform similar tasks independently.
* Inter-individual activities involve one person competing against one other person
* Unilateral activities involve competition among three or more individuals, one of
whom is an antagonist.
* Multilateral activities involve competition among three or more individuals.
* Intra-group activities involve two or more people cooperative working towards a
* Inter-group activities involve competition between teams of two or more.
While these social interaction patterns are common in recreation and leisure
pursuits, little attention is given to these social interaction patterns when studying leisure
behavior. The social structure associated with leisure pursuits have been found to
enhance overall health and well-being (Crandall, 1979; Iso-Ahola & Park, 1996; Lin,
Simeone, Ensel & Kuo, 1979). The benefits of this social structure come from the social
supports provided by our relationships with family and friends. Therefore, much
attention is devoted to understanding the social nature of leisure via our relationships
with friends and family (Freysinger, 1995; Green, 1998).
Friends. Friendships help people live longer, healthier and happier lives; therefore,
increasing levels of life satisfaction (Johnson, 1996; Lin et al.; Lowenthal & Haven,
1968). Like leisure, the word friend is hard to define, yet several characteristics of
friendships are prevalent in the literature. The literature illustrates that while friendships
are important for all subgroups of society, the perceptions of friendship differ among men
and women (Green 1998; Green, 2002; Wright, 1969) and the young and old (Adams,
1993; Field, 1999; Green, 2002; Jerome, 1981).There are certain elements of friendships
that are commonly recognized in the literature. Friendships are voluntarily chosen (Field;
Jerome) for reasons unique to each individual (Adams, 1989; Field). Furthermore, Jerome
highlights the ability of friendships to adapt to changes.
Weiss and Lowenthal (1975) examined the characteristics associated with
friendships. In this study, 216 respondents (of varying ages) were asked to describe their
friends. They suggested that friends are people with whom one has shared interests,
experiences and activities, and with whom one feels comfortable talking. In this study,
friends were also seen as people who are supportive, dependable, understanding, and
More recently, Green (2002) interviewed 10 women (ages 50-87 years) who lived
in two rural communities in Florida. She found that friendships were characterized by
reciprocity, similar interests, trust, and transcended time and place. Green defines
reciprocity, as a "system of exchange" (a give and take relationship) which involves such
actions as helping, providing emotional support, and confiding. Furthermore, the women
in Green's study placed their friendships in the context of what it would be like to be
without friends. Green also examined the role of leisure in friendship. She found that
certain specific leisure activities facilitated friendships. Leisure time among these women
was spent with friends. Furthermore, many of these women identified communicating
and staying in touch with friends as being a leisure interest.
The examination of leisure in the context of friendships and friendships in the
context of leisure reveals an interactive relationship between these two dimensions of life
(Adams, 1993; Green, 1998; Green 2002). The nature of this relationship has been
examined in the lives of men and women, older adults, and individuals with disabilities.
We have learned from these studies that: 1) people meet friends while participating in
leisure activities, 2) people enjoy spending time with friends during leisure; 3) leisure
activities provide opportunities for friends to interact with each other (Adams, 1993;
Freysinger, 1995; Green, 1998; Green 2002).
Family The role of family has also been examined in the context of the leisure
experience (Kelly, 1999; Rapoport & Rapoport, 1975; Willming & Gibson, 2000;
Zabriskie & McCormick, 2001, 2003). In order to understand what the relationship
between leisure and family is, we need to understand what a family is. When we grow up
our family is made up of our parents or guardians or those people who raise us. We may
have brothers or sisters, aunts or uncles, cousins, nieces, nephews, and/or grandparents.
Shaw (1997) suggests that the nature of families is changing and non-traditional families
are emerging (e,g, single parent families, gay and lesbian families, blended and non-
custodial families, and families without children). For some of us they are a source of
support, people we trust, people who are there forever, might be able to choose our
friends, but we have no choice in our families. As mentioned previously, some
researchers such as Rapoport and Rapoport (1975) track the changes in our life, based on
the family life cycle. There are those moments when we are children and we are
dependent on our parents to take us to ballgames, on vacation or to the zoo. As we grow
we tend to rebel against the parental forces and attempt to find our way in the world -
sometimes our parents watch us fail, other times they are there to support us. Then we
reach a point in life when we have children, take them to ballgames, on vacation or to the
zoo. Then there are times when we take care of our parents take them to ballgames or
the zoo. The family life cycle is cyclical. The family remains constant in a world of
change. The family is just that family.
Rapoport and Rapoport suggest that the relationship between leisure and family
changes throughout the course of a life. They suggest that when people have children
they tend to do pursue different leisure experiences than families without children.
Willming and Gibson (2000) discuss how having a family can get in the way of the
parent's pursuit of leisure. Others have discussed how leisure has brought families closer
And so, leisure is a complex phenomenon with the characteristics of freedom and
positive affect. The nature of this phenomenon is existential and involves social
interaction and societal influence. We know that leisure exists throughout one's life and
is often compared to other domains of life such as family and work. Leisure is an
experience in which people participate and from which people derive satisfaction. This
experience is unique to each individual and involves motivations and constraints.
Furthermore, the leisure experience often involves some form of social interaction. This
is what the leisure experience is about in the "normal" society. Is the experience similar
or different for individuals with developmental disabilities?
Leisure and Individuals with Developmental Disabilities
If the primary purpose of most human service agencies is to enhance the quality of
life of their clients with developmental disabilities, and if the normalization principle is a
reflection of quality of life, then it is essential to determine whether or not the leisure of
young adults with developmental disabilities reflects the leisure of the normal society. So
in this section, we will examine what we know about leisure and young adults with
developmental disabilities. Using the format of the previous section we will examine how
the characteristics of leisure are present in the lives of young adults with developmental
disabilities. We will also examine the existential and social nature of the leisure
experiences of this population.
Characteristics of Leisure
Recall from the previous section that leisure has two generally agreed upon
characteristics. The first is that leisure is something in which a person freely chooses to
engage. The second characteristic is that leisure generates positive emotions such as
happiness. The literature supports the notion that individuals with developmental
disabilities are capable of experiencing these two characteristics.
Freedom and Self-Determination
In order for individuals to experience freedom it is essential that individuals with
developmental disabilities be given the opportunity to make choices. And while this may
not always have been the case, recent developments in the human service fields promote
practices such as person-centered planning and self-determination. We know that when
individuals with developmental disabilities are given the opportunity, they can make
choices about their lives.
Individuals with developmental disabilities historically have had few opportunities
to make choices in their lives (Mahon, 1994). Perhaps one reason why these individuals
have had so few opportunities is because of their dependence on social institutions (e.g.:
the educational system, the health care system, and families) to meet their needs
(Wehmeyer, 1995). A lack of opportunities to make choices should not be confused with
an inability to make choices, however. Dattilo and his colleagues have consistently
demonstrated that individuals with mental retardation are indeed capable of making
choices (Dattilo, 1988; & Dattilo & Barnett, 1985).
Dattilo (1988) assessed the music preferences of three individuals with severe
mental retardation. Using a single subject research design, he asked each participate to
identify which type music (Classic, Pop, Christmas and Rock) each participant preferred.
He found that each individual could use an electrical switch system to rank his or her
preferences and to decide which types of music he or she prefers.
Dattilo and Barnett (1985) studied the relationship between choice making and
pleasure among four individuals with severe mental retardation using a single subject
research design. Facial expressions and vocalizations were the units used to measure
affect in this study. They found that there is a difference in affect depending on situations
where individuals make choices versus the situations where individuals are not asked to
make choices. In this study, the individuals with severe mental retardation made choices
using an electrical switch system. The Dattilo studies suggest that even individuals with
the lowest functional skill levels are capable of making choices.
While the Dattilo studies demonstrate that individuals with severe disabilities are
capable of making choices, Mahon and his colleague describe effective strategies that
enable individuals with mild disabilities to make decisions regarding their leisure.
Mahon and Bullock (1992) examined an approach that taught adolescents with mental
retardation in a self-contained classroom to make decisions in leisure. In this study, four
students with mental retardation were observed two times a week during an eight-week
leisure education program. Each session lasted approximately one hour. The leisure
education program emphasized instruction in decision-making and leisure awareness. A
single subject alternating treatment design was used in this study. Mahon and Bullock
found that the program was successful in promoting decision-making.
Mahon (1994) studied two components of self-determination: decision making in
leisure and independent leisure participation. He studied four adolescent males with mild
to moderate mental retardation in a self-contained classroom. Using a single subject
research design, Mahon examined how teaching decision-making skills impact self-
instructed decision-making in leisure. These adolescents were observed in both a
structured leisure education session and in an unstructured leisure time. Mahon found that
decision-making instruction facilitates "an increase in self-instructed decision-making"
(p.67). In addition to these studies, Schleien et al (1995) suggest that choice making
should be a skill addressed in leisure skill development programs for individuals with
While we know individuals with developmental disabilities are capable of making
decisions, we also know that individuals with developmental disabilities are capable of
Happiness was the primary emotion discussed in the section of leisure and the
"normal" society. Much has been written about how individuals with developmental
disabilities are capable of experiencing happiness. Carver (2000) suggests that
individuals with developmental disabilities experience joys and sorrows the same as
people without disabilities. Therefore, he believes that "no one's happiness is any more
real or valid than anyone else's. People who work with this population often describe
situations like the following. Crocker (2000) writes of visiting a three-year-old boy
who lit up our space with his spirit of joy" He had been born prematurely (with a
birth weight of 800g) spent 90 days on a respirator, was initially diagnosed with
serious visual impairments, and went on to have major expression of cerebral palsy
(requiring surgical intervention). When we saw him many of these elements had
modulated, and he clearly loved life. In this visit he was curious, social, sensitive,
and warmly projecting. After he left we all felt that we had been touched by a
gifted little person, and we were searching for some insight regarding his
unmistakable happiness. The final interpretations were not complicated (p. 319).
Much like Crocker, Robison (2000) describes how his children with Down
syndrome share their stereotypical happiness with people whom they encounter. While
numerous examples are available to provide anecdotal evidence that these individuals are
capable of experiencing happiness, according to Meyer (2000) several quality of life
studies indices document happiness among individuals with developmental disabilities as
And so, based on the characteristics of leisure, it would seem as though individuals
with developmental disabilities are capable of experiencing leisure. What follows then is
a description of how other facets of the leisure experience pertain to this population.
The Nature of the Leisure Experience of Young Adults with DD
As mentioned previously, the nature of the leisure experience involves existential
and social components. Therefore, this section describes what we know regarding the
nature of the leisure experiences of young adults with developmental disabilities. We
discuss this topic much as we did earlier -- focusing on the idea that leisure is an
experience that occurs throughout the life course in the context of similar domain.
Furthermore, the leisure experience involves concepts such as leisure participation,
leisure satisfaction and leisure meaning. The social nature of this experience will also be
Leisure as Experience
For individuals without disabilities, the leisure experience is multi-faceted. The
existential nature of this experience occurs throughout life in the context of other
domains of life. The leisure experience involves participation, meaning and satisfaction.
This section describes how the existential nature of the leisure experience has been
studied among individuals with developmental disabilities.
Life Course. It was mentioned previously that studying leisure from a life course
perspective involves examining leisure at different stages of an individual's life. While
much of the life span has been examined in the generic leisure literature, relatively little
attention has been paid to the life span of individuals with developmental disabilities.
That which has been written has focused on two areas: leisure for older adults with
developmental disabilities and leisure for individuals with developmental disabilities as
they transition to adulthood.
Transition services. In this study, the participants are currently transitioning from
high school to adult life. As young adults with developmental disabilities, they have been
and are currently recipients of specific services which have been designed to aide in this
transition. This section will describe transition services and implications related to
recreation and leisure.
In 1984, transition services were brought to the forefront when Will suggested
that schools should better prepare children with disabilities for adult life (Flexer, 1999;
Halpem, 1985, 1993; Will,1984;). The emphasis of her transition model was placed on
employment outcomes. In 1985, Halpem suggested that transition services embrace a
broader viewpoint which includes the overall concept of community adjustment.
Transition services refer to those services provided by the school system that assist
students in making the transition from school to adult life.
According to the Individual's with Disabilities Education Act, IDEA (1997)
transition services are a:
coordinated set of activities for a student with a disability that (a) is designed
within an outcome-oriented process, that promotes movement from school to post-
school activities, including postsecondary education, vocational training, integrated
employment (including supported employment) continuing and adult education,
adult services, independent living or community participation; (b) is based on the
student's needs, taking into account the student's preferences and interests; and (c)
includes instruction, related services, community experiences, the development of
employment and other post-school objectives and when appropriate, acquisition of
daily living skills and functional vocational evaluation (Section 602).
The purpose of these services is to teach the skills "needed for successful adult
functioning" (Flexer, McMahan, & Baer, 2001, p. 39). Flexer et al., suggest that there are
nine transition practices which have received wide-support. According to Flexer et al,
these nine areas include: self-determination, ecological approaches, individualized
backward planning, service coordination, community experiences, assistive technology,
post-secondary education, systems change strategies, and family involvement; and are
commonly incorporated into transition curricula.
Transition services and leisure. Often transition services focus on developing
skills associated with the living, working, and learning domains of life (Lohrmann-
O'Rourke & Gomez, 2001). It is suggested, however, that the playing domain is
important also (Lohrmann-O'Rourke & Gomez; Strand & Kreiner, 2001). According to
Lohrmann-O'Rourke and Gomez, the playing domain involves developing the skills
necessary to participate in recreation and leisure activities. According to Strand and
Kreiner, "leisure skills are a critical component of the transition process because it
provides many connections and relationships for common participation" (p. 476).
The idea, that recreation and leisure are important transition services, is supported
by legislation that recognizes the importance of recreation and leisure in the lives of
individuals with disabilities. When IDEA was reauthorized in 1997, related services were
added to the transition components of the law (Flexer, 2001). Recreation is a related
service that involves four components: (a) assessment, (b) leisure education, (c)
therapeutic recreation and (d) recreation in school and community agencies (Bullock &
Johnson, 1998). According to Bullock and Johnson, assessment involves determining the
"current functional strengths of students with disabilities in terms of skills, abilities and
attitudes" (p. 114). Leisure education is "instruction to improve school and community
involvement and social connectedness through the development of positive attitudes
toward leisure, the development of skills necessary for recreation participation,
knowledge of recreational resources, and recognition of the benefits of recreational
involvement" (p. 114). Therapeutic recreation is defined as "the purposive use of
recreation activities and experiences to ameliorate deficits in social, cognitive, and
physical functioning of students with disabilities" (p. 114). And, "the provision of
recreation services to students with disabilities in the most inclusive setting possible" is
referred to as recreation in school and community agencies (p. 114).
Assessments and curriculum designed specifically for transition services also
include recreation and leisure components (Brolin, 1978; Sample, 1995; Smith, 1995).
Brolin's Life Centered Career Education (LCCE) curriculum addresses 22 competencies
in the areas of daily living skills, occupation guidance and preparation, and personal-
social skills. These areas are supported once academic skills are developed. In this
"Utilizing Recreation and Leisure" is one of competencies in the daily living skills
domain of this curriculum. The subcomponents of the utilizing recreation and leisure
competency embedded in the LCCE curriculum are a) participate actively in group
activities; b) know activities and available community resources; c) understand
recreational values; d) uses recreational facilities in the community; e) plan and choose
activities wisely; and f) plan vacations.
In 2000, da Gama examined the role of recreation in five transition programs (the
Transition Plus Program in St. Paul, Minnesota; Project Challenge in St. Cloud
Minnesota; Community Based Services in Seattle, Washington; Transition Program in
Issaquah, Washington; and the Prevocational Program in Bremerton, Washington). He
interviewed nine parents, 21 program staff and six community programs associated with
these programs. "There was a general consensus among all of the subjects that the role of
recreation in transition so far had been minimal" (p. 121).
Transition services continue to prepare individuals with disabilities for all facets of
adulthood. A consistent theme throughout this literature review has examined leisure in
the context of other domains of life (e.g. school and work). Transition services connect
the different domains of life, preparing individuals to work, to play and to live within the
Work and Leisure Among Individuals with DD. Working is an important facet
of adult life this is true for individuals with developmental disabilities, as well. This
section will describe the role of work in the lives of individuals with developmental
disabilities. A comparison between work and leisure will also be addressed.
According to Hickson, Blackman & Reiss (1995), while most adults with mental
retardation are capable of working as many as 90 percent are unemployed. Fesko,
Temelini and Graham (1997) surveyed 568 staff and 303 consumers from community
rehabilitation providers, independent living centers, and state vocational rehabilitation
agencies. They found that:
* 82% of individuals with mental retardation earned less than $5.50 an hour.
* 39% individuals with mental retardation worked 20 hours or less.
* Individuals with mental retardation were less involved with the job search process
than individuals with other types of disabilities.
* Staff use more individualized job placement strategies for this population.
Individuals with mental retardation who work do so in a variety of settings ranging
from competitive employment to sheltered workshops. Competitive employment typically
refers to working in a community based facility, performing tasks the same as individuals
without disabilities (Hickson et al.; Luft, Koch, Headman & O'Connor, 2001). In this
setting, individuals with disabilities earn the same wages and have the same opportunities
for advancement as individuals without disabilities. The literature uses the term
supported employment to describe situations where individuals with disabilities work in
the community but have additional supports and training. Clustered placements and
enclaves are terms that describe a small group of workers with disabilities who work with
in an organization that primarily employs individuals without disabilities. Mobile crews
involve taking a group of individuals with disabilities into various sectors of the
community to do a specialized task. Entrepreneurial employment involves creating a
small business primarily operated by individuals with disabilities but also employs people
without disabilities. .lhehi ed workshops employ large numbers of individuals with
disabilities and provide additional services to these employees.
While having a job, in and of itself, might contribute to a person's quality of life,
another contributing factor might be the degree of satisfaction associated with one's job.
According to a study by Virginia Commonwealth University (VCU, 1997) 90% of
individuals with disabilities surveyed (n=110) reported liking their job. 53% of these
respondents felt that their job was O.K. but that they'd rather be doing something else.
They reported people, job duties, work conditions and having a job as being the aspects
of the job that they liked.
Dixon and Reddacliffe (1996) interviewed young adults with developmental
disabilities in Australia about their work experiences. These young adults stated that they
enjoy work, because work prevents boredom, develops skills, enhances self-concept,
promotes independence and provides life experiences. In the same study, Dixon and
Reddacliffe report several work-related problems identified by these young adults. These
problems include interpersonal difficulties, asocial behavior, qualifications and learning
difficulties, rejection, time constraints, and underemployment.
It has been noted by Dixon and Reddacliffe that one of the biggest work-related
problems of individuals with disabilities is their ability to interact socially with co-
workers. Yet, Fesko, Temelini and Graham report that 96% of individuals with mental
retardation report that they felt comfortable asking co-workers for assistance and 90% of
these individuals felt comfortable asking their supervisor for help when necessary.
According to Sinnott-Oswald et al (1991) leisure activities, use of leisure time, and
involvement in activities were related to supported community employment.
The amount of free time associated with not working, the perceived enjoyment
associated with the work experience, and the social nature of the work environment
suggests that the relationship between work and leisure for this population might reveal
interesting findings. Little research, however, has been done in this area.
Operationalizing the Leisure Experience of Individuals with DD
Most of the research about recreation and leisure of individuals with developmental
disabilities examines the operationalization of the leisure experience. Efforts to
understand the participation patterns, motivational properties and constraints have been a
primary interest of researchers in this area. Likewise, the benefits of therapeutic
recreation programs for this population have been examined thoroughly. Less attention
has been granted to the areas of leisure meaning and leisure satisfaction associated with
this population. This section will address the research in each of these areas.
Participation. As mentioned previously, the concept of leisure participation
involves the behaviors associated with being engaged in an activity that is freely chosen
and enjoyable. When attempting to operationalize leisure participation, scholars examine
specific activity involvement, motivations, and constraints. In the area developmental
disabilities, this concept is measured most frequently in articles examining recreation
Specific Activity Involvement. As mentioned previously, specific activity
involvement is measured by examining those activities that people find enjoyable.
Research in this area has examined leisure preferences, actual participation patterns, and
benefits associated with participation.
Individuals with mental retardation have leisure preferences. Malik (1991) and
Hoge and Dattilo (1995) found that individuals with mental retardation preferred certain
activities over other activities. Malik found that relationships are very important to this
population. Individuals with mental retardation also prefer participating in activities with
people who are like them (Neumayer, Smith, & Lundegren, 1993).
While some studies examined what the preferences of this population are, Sparrow
and Mayne (1990) examined actual participation patterns. They observed 40 adults with
mild intellectual disabilities and found that 49 % of the participants participated in
hobbies and pastimes; 35% participated in indoor recreation; 18% in health and fitness
activities; 10% in team sports and outdoor pursuits; and 3% in individual sports and water
activities. Hawkins (1991) found that males with mental retardation were more likely
than females to watch sports and take classes. She also found that males indicated more
of a desire to dish, boat or canoe, ride a bicycle, engage in pet care, and jog or run than
females. Hayden el al (1996) examined two groups of individuals with mental
retardation. One group lived in an institution, the other group lived in the community.
Both groups tended to participate in passive leisure activities (e.g. watching or listening
to TV, radio, and records).
In some cases, researchers explored the benefits of recreation participation for this
population. Bedini, Bullock, and Driscoll (1993) found that individuals who participated
in a leisure education program demonstrated positive changes in the areas of competence,
self-esteem, communication, perceived control, social skills, feelings about leisure, life
satisfaction, and feelings about life. These changes, however, were not statistically
significant. Wilhite and Kleiber (1992) found that individuals with moderate to severe
disabilities who were involved in sport were more likely to frequent other community
locales and showed a trend towards interacting with other people to a great extent than
those not involved in sport. Likewise, Mactavish and Searle (1992) found that
participation in physical activity was found to have a significant and positive effect on
perceived competence, locus of control and self-esteem.
And so, several researchers have studied the preferences, actual participation
patterns and benefits associated with specific activity involvement. Some researchers
have gone beyond this in order to understand the motivations and constraints associated
with recreation participation.
Motivations. As mentioned earlier, motivations explain why people engage in
specific activities. Several studies reveal different motivations related to the leisure
pursuits of individuals with developmental disabilities. Some studies focus on
motivations for specific recreation programs (Kleiber et al, 1990; Shapiro, 2003) while
others examine the motivations for leisure on a broader spectrum.
Kleiber et al (1990) examined the reasons why people went to Special Recreation
Association (SRA) programs. They found 30% referred to specific activities; 28.3 %
participated because it was something to do, 21.2% reported that they enjoyed being there
and 6% reported being with friends and meeting new people as a reason why they kept
going to SRA programs. Shapiro and Yun (2003) developed and tested a Sport
Motivation Questionnaire for persons with mental retardation. Shapiro (2003) found that
Special Olympic athletes primarily participated in order to improve their abilities and to
interact with their friends.
On a more global basis, Koegel, Dyer and Bell (1987) suggest that social
avoidance behavior increases after individuals with developmental disabilities
experienced repeated failures in social situations. They also found that successes in child-
preferred activities might serve as motivation to decrease social avoidance behavior.
Malik (1990) found that participants in her study wanted to learn "adult skills."
This literature related to individuals with mental retardation supports two areas of
motivation identified by Beard and Ragheb (1980). The two types of motivation are
social and stimulus/avoidance.
Constraints The literature has identified several constraints which limit the
recreation and leisure participation of individuals with developmental disabilities Some
studies found the lack of financial resources to be a barrier to leisure participation among
individuals with mental retardation (Bedini, Bullock, & Driscoll, 1993; Hawkins, Peng,
Hsieh & Eklind, 1999; Hoge & Dattilo, 1995; Sparrow & Mayne, 1990). Hoge and
Dattilo, Hawkins et al., and Sparrow and Mayne found that individuals with mental
retardation lacked the transportation necessary to get to the leisure activities that they
prefer. Furthermore, all three studies found that individuals with mental retardation often
lacked the skills necessary to pursuing leisure activities. Hoge and Dattilo found that
many times these individuals were unaware of leisure services. The lack of opportunities
was cited as a barrier to leisure participation in two studies (Hoge & Dattilo; Sparrow &
Mayne). Bedini (2000) described the phenomenon where the society's attitudes about
individuals with disabilities limit leisure opportunities as being a stigma. Hoge and
Dattilo and Sparrow and Mayne identified social stigma as being a leisure constraint for
individuals with mental retardation. The lack of friendships and social support is yet
another leisure constraint identified in the literature (Green & Schleien, 1991). Hawkins
(1991) reported that individuals with mental retardation have low levels of perceived
competence and that these low levels of perceived competence may limit an individual's
ability to participate in freely chosen leisure pursuits. The last barrier to leisure
participation mentioned in the literature pertains to the concept of self-determination.
Many individuals with mental retardation are not allowed to make choices about their
leisure pursuits (Dattilo & Barnett, 1985; Hawkins et al, 1999). This lack of choice limits
the number of leisure opportunities that individuals with mental retardation are given.
These constraints can easily be categorized into the types of constraints identified
by Crawford et al., (1991). For example, constraints related to activity skill, perceived
competence, self-determination, and awareness may be classified as intrapersonal
constraints. The lack of friendships and social support would be consistent with
interpersonal constraints. And, structural constraints might include the lack of financial
resources, transportation, opportunities, and social stigma. Hawkins et al. tested the
hierarchical negotiation of constraints model (Crawford et al., 1991; Jackson et al., 1993),
with individuals who had developmental disabilities. Hawkins et al (1999) found that
structural and interpersonal constraints were most common among individuals with
Satisfaction. We know little about the concept of leisure satisfaction in relation to
individuals with developmental disabilities (Bedini et al., 1993; Williams & Dattilo,
1997). Bedini et al., reported that they asked individuals with mental retardation, as they
made the transition from school to adult life, about leisure satisfaction. Williams and
Dattilo report that individuals with mental retardation could demonstrate feelings of
positive affect via smiles and vocalizations. They suggest that these gestures indicate a
type of psychological and/or physiological satisfaction response. However, more research
is needed regarding leisure satisfaction among individuals with mental retardation and
other developmental disabilities.
Meaning. While little research has been conducted examining leisure satisfaction
among this population, even less research has been conducted regarding the concept
leisure meaning and leisure perception (Dattilo & Hoge, 1995; Malik, 1990). Malik
interviewed 19 residents of group homes in Illinois who had mental retardation questions
regarding leisure awareness, leisure perception, and leisure interests. Two of the
respondents in her study were able to define leisure and did so by including a component
of being by oneself. Twenty-seven percent of the respondents in the Malik study were
able to define recreation. They described recreation as: activities, time and freedom, and
Dattilo and Hoge (1995) interviewed 100 individuals with mental retardation who
were participants in a leisure education program. They identified three overarching
themes associated with the concept of leisure perception. These were leisure preferences,
benefits of leisure participation, and constraints to leisure. Both studies on leisure
perception, suggest a need for further research in the area of leisure meaning.
Social Nature of Leisure Among Individuals with DD
As mentioned previously, part of the social nature of the leisure experience
involves the interactions that we have with others. For individuals with developmental
disabilities, friends and family are important to the leisure experience. Despite the
importance of social interactions and the leisure experience, individuals with
developmental disabilities are more likely to do things by themselves (Dattilo & Hoge;
Sparrow & Mayne, 1990). Sparrow and Mayne found that 44% of their participants (n=
40) spent time engaged in solitary activities, while 37% spent time with friends and 19%
spent time with family. Therapeutic Recreation programs for this population tend to focus
on the development of social skills and friendships (Dattilo & Schleien, 1991). Many of
the leisure experiences of individuals with developmental disabilities involve interacting
with others. This section will describe what is known about the interactions that these
individuals have in relation to friends and family.
The friendships of individuals with developmental disabilities are just as important
to the leisure experiences of this subpopulation as they are to the "normal" population.
Individuals with developmental disabilities can benefit from friendship much like the rest
of the population. Thus, friendships can help individuals with developmental disabilities
live longer, happier and healthier lives. This section describes what is known about the
friendships of individuals with developmental disabilities.
As previously mentioned, there is some conflict in the literature regarding
friendships and social interactions as being a motivational component associated with the
leisure experiences of individuals with developmental disabilities. Recall that Dattilo and
Hoge (1995) report that individuals with mental retardation like to do things by
themselves. Does this necessarily mean that they prefer solitary activities? Might it mean
that they prefer independence and autonomy? Malik (1990) suggests that relationships
are very important to individuals with mental retardation. Kleiber et al (1990) conducted
a study in a similar region of the country and found that 6% of the individuals kept
attending the SRA program so they could be with friends and meet new people. Likewise,
they found that 82.1% of their participants indicated that the SRA program helped them
make new friends. Almost 44% of the participants in Kleiber et al's study reported doing
things with SRA friends outside of SRA.
If friendships are important to this population, how are friendships perceived by
them? Neumayer, Smith and Lundegren (1993) suggest that individuals with Down
syndrome prefer bowling with other individuals who have Down syndrome. Hayden et
al., (1996) found that their participants primarily engaged in activities with friends who
were also disabled. Kultgen and Hawkins (1992), likewise use social comparison theory
to describe why people with disabilities might prefer being friends with other individuals
who have disabilities.
Several researchers suggest that inclusion should encourage friendships between
individuals with and without disabilities (Dattilo & Schleien, 1991; Green & Schleien,
1991; Hayden et al., 1996). In fact, many inclusive recreation programs fail in their
attempts to facilitate friendships between individuals with and without disabilities. Green
and Schleien suggest that adults with mental retardation who live in the community rarely
develop meaningful reciprocated friendships. They further suggest that this population
does not meet or make friends via recreation participation. Some researchers attribute this
failure to the poor social skills of individuals with developmental disabilities and,
therefore, suggest that therapeutic recreation programs include social skill and friendship
development interventions (Green & Schleien, 1991; Heyne, 1997).
While individuals with developmental disabilities may not interact fully with their
peers who do not have disabilities, it is unknown as to why this occurs. It may be a
reflection of an individual's preferences or it may be a reflection of the person's skill
deficits. Likewise there is conflicting information about the role of friendships in leisure
pursuits. Much more research is needed in this area in order to understand the nature of
As stated earlier, we can choose our friends but we cannot choose our families.
Families are important to individuals who have developmental disabilities. When
children with developmental disabilities are born, parents begin advocating for the rights
of their children. Parents and guardians identify and seek out the best services for their
children. Sometimes family decisions (e.g. where to live and work) revolve around the
services that these children receive. As the children age, siblings join parents in being
advocates for these individuals. Many adults with developmental disabilities live with
their parents. Since families are instrumental in the lives of this population, a body of
knowledge emerges which illustrates the role of family in the leisure pursuits of
individuals with developmental disabilities. This section will describe the familial nature
of this leisure experience.
Mactavish (1994, 1997) found that three family recreation patterns tend to exist in
families who have children with developmental disabilities. She suggests that the whole
family may participate in a given activity. She also found that within the familial
structure small groups emerge. These small groups engage in activities together.
Mactavish also found that people alternate between doing things with the large familial
group and the smaller one. In her study, the small group activities tended to dominate.
These families participate in five categories of activities which include passive
activities, play, physical, social and entertainment (Mactavish, 1994, 1997; Mactavish &
Schleien, 2000). Mactavish found that the level of disability affects the recreation
patterns of these families. Her findings suggest that families who have children with
significant disabilities tend to engage in passive, play-oriented activities, while families
who have children with milder conditions tend to participate in physical activities and
entertainment. Overall, she found that these families frequently participate in physical
activities, passive activities and social activities.
Mactavish, Schleien and Tabourne (1997) report that 60% of the respondents in
their study (n=65) believed that their family recreation occurred equally in both the home
and the community. While 29% reported spending this time at home and 11% reported
spending this time in the community. They found that during the summer months nearly
77% reported spending more family time in community locations.
The body of knowledge reflecting the nature of family recreation in families who
have members is relatively limited in scope. Most of this literature is based on one study
(Mactavish, 1994) and therefore describes the recreation patterns of families who have
children with developmental disabilities in one large urban center in the upper Mid-West.
More information is needed on families who include individuals (who are not children),
yet have developmental disabilities.
While much has been written about the leisure experiences of individuals who have
developmental disabilities, there are some gaps in the literature. The literature suggests
that the leisure experiences of young adults with developmental disabilities may reflect
that of young adults without disabilities, thus revealing that the leisure experience might
be a reflection of the normalization principle actualized. The characteristics of leisure
(freedom and positive affect) have been reported to exist in both populations. Likewise,
the existential and social nature of leisure appears to be present in two groups. Further
research is needed to expand our understanding of the comprehensive nature of the
leisure experiences of young adults with developmental disabilities. This study intends to
fill that void.
This chapter describes the processes and procedures used in this study.
Furthermore, in this chapter the unique and defining characteristics of the people and
places studied in this project are described. The beginning of this chapter describes the
methods used to collect data for this project. Once these procedures are described, the
actual process that occurred in this study is explained. Characteristics about the research
participants and the unique community in which they lived are shared.
The purpose of this study was to understand the subjective nature of the leisure
experiences of young adults with developmental disabilities. In order to accomplish this
task, a naturalistic perspective was adopted and qualitative research methods were used.
A naturalistic research perspective embraces the idea that "an emerging propositional or
theoretical understanding... is grounded in the real lives and the real worlds of the persons
and the phenomenon being studied" (Bullock, 1993, p.29). As Glancy (1993) states, "to
become informed about the subjective perspective, the inner way of knowing that frames
the thinking and behavior of a client or group must be learned as it is known by them" (p.
259). In the context of this study, the naturalistic perspective was used to understand the
leisure experience from the words of young adults with developmental disabilities.
In order to accomplish this task, a variety of qualitative research methods were
used. The primary method of data collection involved in-depth interviews with
individuals who have developmental disabilities. A secondary method of data collection
involved follow-up interviews with the research participants and their significant others.
Additionally, participant observation was used to gather additional information about the
community and the research participants.
Since the intent of this project was to understand the subjective nature of the leisure
experiences of young adults with developmental disabilities, a research method which
examines an experience from the perspective of the research participant was used.
According to Henderson (1991), interviews are used "to find out what is on people's
minds and to access the perspective of others" (p.81). Holstein and Gubrium (1995) state
"social researchers generate massive data by asking people to talk about their lives;
results, findings, or knowledge come from conversation" (p.2). In an approach that
Holstein and Gubrium call the "active interview," both the researcher and the research
participant guide the interview process. Right or wrong responses are non-existent. The
process of interviewing is flexible and topics evolve throughout the conversation.
Interviews and Developmental Disabilities
While the importance of including the perspectives of individuals with intellectual
disabilities in the research process has been noted, there have been few successful
research endeavours in this area (Mactavish, Lutfiyya, & Mahon, 2000). Historically,
when individuals with cognitive disabilities were interviewed, standardized, open-ended
interviews have been used (Dattilo, Hoge & Malley, 1996; Malik, et al., 1991; Sigelman
et al, 1983). Malik et al., stated that "yes/no and either/or questions have been found to
be the easiest type of questions for persons with mental retardation to answer. Yet such
questions are subject to the greatest amount of aquiscence" (p.62). In regard to multiple
choice and likert type scales, "items are somewhat more difficult, but offer less chance
for acquiescence" (p.62). Studies such as the one by Malik and her colleagues (1991)
demonstrated the ability of individuals with cognitive impairments to be actively
involved in the research process. Malik et al. suggest that interviews should not last
longer than 30 minutes at a time, in order to prevent participant fatigue. In recent years,
research with this population has included more informal interviewing techniques
(Dattilo, 2002b; Dattilo & Hoge, 1995; Mactavish et al., 2000; Malik, 1990; Pedlar,
Haworth, Hutchison, Taylor & Dunn, 1999).
Applying the Interview Process
There were three phases of the interview process. The first phase involved
interviewing research participants who agreed to participate in this study. The second
phase involved re-interviewing these initial participants and interviewing those
participants recruited during the second phase of this study. The third phase of the
interview process involved interviewing an individual whom the initial research
participants identified as being a member of their circle of support.
All of the interviews conducted for this study were semi-structured, in-depth and
face to face. Furthermore, each interview conducted for this study was audio-taped and
transcribed. Each interview was conducted at a time and place chosen by the interviewee.
Therefore, these interviews occurred in bowling alleys, fitness centers, private residences,
The purpose of the first phase of this study was exploratory in nature. These first
interviews were scheduled and conducted once participants indicated an interest in
participating in this study (further information about the recruitment phase of this study
and the individuals who participated is discussed later in this chapter). Once these
individuals expressed an interest in this study, an acquiescence scale was used to assess
each research participant's ability to respond appropriately to questions. The scale
described by Perry and Felce (2002) that was used involves the following four questions:
(After pointing to the person's watch or some item of clothing)
* Does that (watch) belong to you?
* Do you make all your own clothes and shoes?
* Have you seen the people who live next door?
* Did you choose who lives next door?
According to Perry and Felce, the second and fourth response should be negative. All of
the individuals who expressed an interested in this study were deemed appropriate.
Once the research participant's skills were assessed, an informed consent process
occurred. Parents were asked who the legal guardian of each participant was. Consent
was obtained by the legal guardian, in some cases the legal guardian was the individual
with the developmental disability. In all cases, the research participant was informed of
the research protocol via the informed consent document or the assent script approved by
the Institional Review Board at the University of Florida.
The interviews were conducted when the informed consent process was complete.
During the first phase of this study, interviews lasted between 15 minutes to 42 minutes
depending on the participant's ability to answer questions. A predetermined interview
guide (Appendix A) was used to initiate the conversation between the researcher and the
research participant. This interview guide was designed to understand the leisure
experiences of individuals who have developmental disabilities. Questions addressed
facets of leisure experience (e.g. constraints, motivations, perceptions, attitudes,
participation, satisfaction and meaning). Prompts and probes were used to clarify and
elaborate points made by the research participant.
The purpose of the second phase of the interview process was to verify and
expand upon themes developed during the initial interview process. Therefore, during the
second phase of the interview process, interviews lasted between 10 and 20 minutes. A
second interview guide was used for this interview (Appendix B). The questions on this
interview guide examined emerging topics (e.g., normalization, friendships, family) and
verification topics (e.g., happiness, enjoyment, activities).
The third phase of the interview process involved interviews with individuals
whom the primary research participant identified as being an individual trusted or felt
knew them best. These individuals were considered to be a member of the primary
research participant's circle of support According to Pedlar et al., (1999) a circle of
support includes those individuals in a person's life who "reinforces his or her strengths
by providing encouragement, instruction where needed, reassurance, trust, and
unconditional love and caring" (p.6). This person was identified during phase one of the
interview process with the questions:
* Who do you trust?
* Who knows you best?
* Would you mind if I ask them questions about you, like the ones I asked you
In this study, all of the participants identified their parents as the individuals) that they
either trusted the most or knew them the best. For the most part, one parent was
interviewed for each participant in this study. The exception was that one mother asked
her husband to help respond to the questions. In this interview the parents responded to
the questions together. These interviews lasted from 15 minutes to 1 hour. The initial
circle of support interview guide (Appendix C) designed for this project, was modified
(Appendix D) to reflect the emerging themes in this study. These interviews discussed the
parent's understanding of their own leisure; the parent's understanding of their child's
leisure; information about the child's background (e.g., diagnosis, schools, family life),
friendships, and the parent's perception of normalization.
The information obtained from these interviews served as the basis of this study.
As themes emerged from the data obtained in the interviews it became apparent that an
unique community was being studied. Therefore, participant observation was used to
gather additional information about the community, the families, and the participants
The emerging nature of the data collection process is consistent with the process
of constant comparison. Constant comparison techniques were used throughout this study
interviews were transcribed and analyzed continuously. As these transcriptions were
analyzed, themes emerged. Initially open coding procedures were used. According to
Strauss and Corbin (1998) open coding is "the analytic process through which concepts
are identified and their properties and dimensions are discovered in the data" (p.101).
Once open coding procedures were implemented, axial coding procedures were applied.
Axial coding is the process of grouping data by means of sub themes Once the processes
of open coding and axial coding were implemented, a theory is refined and integrated
through the process of selective coding. This process occurs at the point of theoretical
saturation, which is "the point in category development at which no new properties,
dimensions or relationships emerge" (p.143). Therefore, a grounded theory is developed.
Constant comparison was used "for raising questions and discovering properties
and dimensions that might be in the data" (Strauss & Corbin, 1998, p.67). Furthermore,
constant comparison was used to determine the point of data saturation, which may occur
with a sample size of eight (McCracken, 1988).Once the initial eight interviews were
conducted, the interviews were transcribed and initial themes surfaced. Upon analysis of
these initial themes, additional questions arose. Consistent with the constant comparison
technique, a second interview guide was developed (Appendix B) to verify themes that
were emerging. Likewise, the interview guide initially designed to be used with the circle
of support (Appendix C) was revised (Appendix D) to reflect the emerging themes.Two
additional participants were recruited for the second phase of data collection, to verify
Reliability and Validity
Efforts were taken initially, to recruit individuals who were capable of providing
consistent and accurate responses. Due to the nature of the study, the research
participants were screened via an acquiescence scale. In order to assess the reliability and
validity of these interviews, two methods were used. First, as previously mentioned,
verification interviews were conducted with each research participant to determine
whether initial responses were accurate and to determine whether themes were repeated.
Within each interview session, several questions were repeated to determine consistency
and accuracy of the responses of each participant. Likewise, several questions from the
first interview were repeated with each respondent. Secondly, data from the interviews
with the research participants were compared to responses from interviews with
individuals in the research participant's circle of support (Appendix C). For the most
part, the responses that the participant's gave during the first interview were consistent
with the responses in the second interview. Likewise, most of the responses of the parents
reflected that the initial responses of the primary research participants were accurate.
All of the interviews were conducted by the same researcher. She also transcribed
each of the interviews and analyzed the data. During the initial phase of data analysis, she
consulted one of the dissertation committee members who has experience conducting
qualitative research. Upon consultation, the researcher and the consultant revised
subsequent interview guides.
During the data analysis phase of this project, two experienced researchers
independently read the transcripts of the interviews obtained in this study to check for
emerging themes. These researchers both earned master's degrees in Recreation, Parks
and Tourism and have extensive research experience. These researchers independently
reviewed each transcript and identified themes and sub-themes. Their findings were
consistent with the primary researcher.
Participation Criteria.The primary research participants were young adults with
developmental disabilities. The criteria used for this study was that young adults with
developmental disabilities include those individuals ages 18 to 35, who are no longer
enrolled as full-time students in a special education classrooms. A developmental
disability was defined using the criteria identified by the National Association of
Developmental Disability Councils (NADDC) which was described in Chapter 1.
Rather than expanding this sample to include a wide variety of developmental
disabilities or by limiting this study to one specific type of developmental disability, (e.g.
mental retardation) I focused on a variety of individuals who primarily had cognitive
impairments. Therefore, my sample included individuals with mental retardation, autism,
Down syndrome, and other non-specific syndromes or disorders.
Sampling. A combination of convenience, snowball theoretical and purposeful
sampling methods were used to recruit research participants. According to Patton (1980)
"purposeful sampling is used as a strategy when one wants to learn something and come
to understand something about certain select cases without needing to generalize to all
such cases" (p. 100). Patton suggests that purposeful sampling be used when researchers
"desire in-depth, detailed information about cases" (p. 101). Lincoln and Guba (1985)
described purposeful sampling strageties as having certain particluar characteristics,
which include a) emergent sampling design; b) serial selection of sampling units; c)
continuous adjustment or "focusing" of the sample; and d) selection to the point of
While the identity of the researcher was important throughout this study, perhaps it
was most important during the recruitment phase. Whether the study is quantitative or
qualitative the researcher's subjectivities play a role. Who the researcher is, where he or
she is from, who the researcher knows, and what experiences the researcher has had in
the past are always reflected in the research being conducted. Qualitative research
methods recognize this fact and do not attempt to hide it behind the mirrors of random
sampling, outliers, or other statistical methods. The qualitative researcher brings a
dimension to the research that ultimately affects the nature of the study. This is evident at
every step in the research process, especially in the recruiting phase.
Initially, I targeted agencies in Alachua County, FL that serve individuals with
developmental disabilities (e.g. the Association for Retarded Citizens) to recruit potential
research participants. Letters describing this study were sent to these agencies seeking
permission to recruit and assistance in recruiting participants from each agency. I sought
permission to make oral presentations to the participants and staff at each agency.
While visiting the agencies in Alachua county, I wore garments that indicated my
involvement with a national organization serving individuals who had developmental
disabilities. The reason I wore these garments was to illustrate her experience in working
with people who have developmental disabilities. In one agency that I walked into,
clients walked up to me and pointed to the emblem on my shirt and said "I used to do
things with that organization." They then proceeded to tell me about recent events in his
or her life. Likewise, I attempted to establish rapport with the executive directors of these
agencies by discussing public policy issues. Unfortunately, these attempts to establish
rapport did not significantly help in recruitment. I relied upon recommendations and
referrals of potential research participants and agency staff. Although several agency
staff agreed to assist in the process, after three months, one out of 400 potential
participants expressed an interest in this study. Numerous attempts were made to contact
this potential participant but all attempts failed. I was not successful in breaking into the
developmental disabilities community in north central Florida.
This was not the first time my efforts failed. Three years earlier when I first moved
to the community, I attempted to become involved with a chapter of a national
organization for people with developmental disabilities. It took me approximately six
months to get into the organization. After a year of doing administrative tasks for the
organization (e.g. planning special events, recruiting volunteers, fund-raising), I was still
considered to be an "outsider" and gradually she left the organization. Perhaps this is
because of the "turn-over" in a university community or perhaps it is because of the
dynamics of the developmental disability community in general. In the developmental
disability community, parents band together to fight for services when the children are
young. They support each other through the life course and as such they have shared life
After three months, I switched communities. I made the transition from being an
"outsider" to being an "insider". I returned to a large metropolitan area in the midwest,
where I was an active member of the developmental disabilities community for 12 years
prior to studying in Florida. I knew several people who worked in agencies that provided
services to young adults with developmental disabilities. I was "an insider" who grew up
in the physical community in which these individuals now live. I knew what schools
these individuals attended, because my friends and I attended the same schools while
growing up. I had worked closely with the school districts and other area agencies
throughout high school and college. I attended Individualized Education Plan (IEP)
meetings in the district. I knew these people and they knew me. So, the eagerness on the
part of these staff and agencies to participate was of no surprise. The staff and agencies in
this community invited me to attend a parent support group meeting.
This parent support group meeting was taking place at a community bowling alley
and recreation center. While the parents met in the concession area, young adults with
developmental disabilities from all over the metropolitan area, bowled and watched
others bowl. They socialized and snacked. There were over a hundred young adults with
developmental disabilities in the bowling alley that day. Some were with Special
Olympics, some were just there to bowl. For others, it was a day structured by their group
I initially met with the parents and staff to explain the project to them, to get an
idea of which people would be appropriate participants in this study, and to obtain
consent where appropriate. After meeting with the parents, I went out to the lanes and
began to meet the potential participants. Several of the participants remembered me from
a few years ago and were excited to see me. They ran to me and embraced me. These
participants introduced me to other potential participants saying:
* "This is Kari, she used to work at << fill in the blank>>."
* "This is Kari, she used to coach everything."
* "This is Kari, she'd help us when we needed her."
* "This is Kari, she used to do everything for us until she moved to Florida."
* "This is my friend, Kari."
They initially began telling me about their current jobs, their friends, and of course,
their bowling scores. These participants had never seen me at a bowling alley before. I
am not a bowler, I throw gutter balls even with bumpers and a ramp. The ability of these
potential research participants to recognize me in a new environment, three years after
our last encounter, demonstrates a few points. The first might be that I am "an insider",
someone with whom they are familiar. The second point is that these potential research
participants are of a high skill level -- which enables them to acquire, maintain and
generalize the skills to recognize certain people in their environment.
That day was the turning-point of this project. At the meeting, parents and young
adults with developmental disabilities agreed to participate in this study. They then
started to encourage others to participate as well. People were pulling out cell phones and
scheduling interviews for me. I was home for the holidays and without a car, so members
in the developmental disabilities community began driving me from one person's home
to another. I was an "insider" and was getting the story from other "insiders." This
project had a life.
The Physical Community
It has been recognized that the community being studied also affects the research.
In this study, the physical community in which these individuals live is unique. It is not
rural. It is not inner city. It is not urban. It is suburban. It is even unique for a suburban
community. It is a small town embedded in a busy metropolitan community. In this
study, the researcher will call the small town Prairie View and the larger city at the heart
of this metropolitan area River City.
Prairie View is a suburb of a large metropolitan area in the Heartland of the United
States. Prairie View has its own mayor and city council, police department, volunteer fire
department and school district. In the midst of the hustle and bustle of the large city that
surrounds Prairie View on three sides, Prairie View still has a small town atmosphere.
Downtown Prairie View is about five blocks, yet is home to the annual Fourth of July
parade. People come from all over the state to attend this parade and other festivities such
as the "firefighter's games." There is a gazebo in the center of town where live music is
played every week during the summer. There is a community pool that is open to dues
paying members. The large new public library provides access to recreational books,
children's literature and the internet. There are five public parks within the city limits and
several nature trails. A private golf course and a private fitness center are also located in
the small town.
Although the Prairie View is independent from River City; the small town is
considered to be part of the larger city -just another borough in the larger community.
Two of the borders that join Prairie View to the larger River City are busy corridors
which contain industrial parks and recreational areas. The industrial areas include: car
lots, furniture stores, restaurants, and lumbar yards. The recreational areas include a small
par 3 golf course and driving range; a few upscale of recreational facilities such as: a
small scale amusement and water park and a horseracing track; and a large River City
municipal park with space available to accommodate four softball games, 15 soccer
games, disk golf, tennis, skeet shooting, trail biking, soap box derby racing, and a remote
control airplane strip.
On the third side where Prairie View joins River City there are several upper
middle class subdivisions and apartment complexes. There are grocery stores and strip
malls. Embedded within one of the subdivisions is one of River City's community centers
operated by the municipal recreation and parks department. This community center has a
classroom, gymnasium, swimming pool, and game room.
The fourth side of the town borders a small town similar to Prairie View. This town
is slightly smaller but also houses recreational facilities such as a large community center,
private golf course and park. The homes in this town are smaller and more run down in
contrast to the upper middle class properties in Prairie View. In Prairie View, the
residents take great pride in remodeling homes, adding on major additions to existing
properties, and pursuing massive landscaping endeavors.
Prairie View is a community of approximately 6,000 people. In December of 1998,
when most of the research participants in this study were still in school, 77 students
between the ages of 16 and 21 received special education services in the Prairie View
School District. Of these students 13 had a diagnosis of mild mental retardation, three
were classified as having moderate mental retardation, and four were classified as having
severe and/or profound mental retardation. In the Prairie View School District, the
number of students with mild mental retardation ranked seconded to those with a specific
learning disability (n= 42).
Prairie View is located in a state which has been recognized for innovation in the
field of developmental disabilities (Schalock & Braddock, 2002). According to
Wolfensberger (2002) there are major sociocultural values in the state, which lead to
positive actions in the areas of advocacy, legislation, and service delivery. He suggests
that people in the state value: law and order, constitutionalism, middle-church
Protestantism (service oriented; guilt motivation), Protestant ethic, fiscal conservatism
(non-duplication of services), rugged individualism (mutual assistance), private
enterprise, frontier pragmatism, local initiatives and control. According to
Wolfensberger, these values prompted the citizens of the state to act by recognizing:
* Service as a right;
* The retarded (sic) as citizens;
* A confrontation with dehumanization;
* Schooling, training and work;
* Cost-benefit rationale;
* Generic agency integration;
* Citizen advocacy;
* Consumer-professional partnerships;
* Competitive institution standards;
* Realistic limits to demands;
* Dispersal of services;
* And, funding partnerships.
It was actions such as these that prompted the development of innovative programs
in the state. Wolfensberger "Americanized" the normalization principle in this state.
Schalock studied quality of life of individuals with developmental disabilities, in this
state (Schalock & Braddock, 2002). It was one of the first states to have advocacy groups
such as the Association for Retarded Citizens (DeKraai, 2002).
Within this community there are several individuals who helped make this study
possible. Without the research participants and their families, the project never would
have evolved. Initially, ten interviews were scheduled and eight were conducted due to a
snow storm that came into the region that weekend. Upon analyzing the initial data, the
two participants not interviewed in phase one, were recruited and interviewed during the
second phase of the project.Among the research participants, there are differences and
similarities. The participants live in different types of residential settings and work in
different types of vocational settings. Some knew "me", others did not. Some are
actively engaged in structured recreation activities, others are not. Some are males and
others are females. As for commonalities, there are a few. All of the participants were
from white, middle class families (as opposed to representing different racial or socio-
economic groups). They are all young adults ages 21 to 32 with developmental
disabilities (as opposed to being school aged or older adults). They all reside in Prairie
View. All of them have tremendous support and encouragement from their families.
Of the ten interviews, two were conducted with individuals with whom I had never
worked. One of the two moved to the community from another state after I moved to
Florida. The other individual was from another suburb of River City. She recently
became active with this group of participants. Two of the interviews were with people
who are no longer participating in structured recreation programs for individuals with
developmental disabilities. These individuals knew me when they were younger. The
remaining research participants were individuals that I worked with in the past. These six
are still enrolled in structured recreation programs. Four of the research participants are
male and six are female. At the time of the initial interviews, one was unemployed, four
worked in sheltered workshops, and five worked in the community. Two of the
participants lived on their own either in an apartment or house, three lived in group
homes and the remaining five lived with their parents. Thisstudy is the story of ten
individuals and their collective experiences. For the purposes of this study, these ten
individuals will be called Danny, Diane, Becky, Carol, Jessica, Andy, Mike, Kelly,
Naomi, and Charlie. A description of these ten individuals follows.
Danny is a rebel without a cause. Anyone who walks into a room where Danny is,
will immediately be struck by the strong presence of a frail looking young boy with no
ears. Danny is tall and wirey, yet his fragile body holds the heart of a gladiator. Danny's
personality and spirit are vivacious. He is full of energy, always talking and bouncing off
the walls. This energy and spirit often get him into trouble. His restless temperament
knows no limits. He will challenge his peers without realizing his limits. He will do what
everyone else is doing just to fit in. Danny is cool, there is no doubt about that. He walks
with a swagger and hangs out with the cool kids. His parents identify his social presence
as one of his strengths. Where ever he is he runs into people he knows.
He was born 22 years ago with a rare syndrome, that involves an extra tag on
chromosome 21. According to Danny's mom, "we got a big surprise when he was born
because he had no ears and they were fearful that he had no kidneys and when he finally
urinated, the nurses were screaming, 'he pee-ed, he pee-ed! "' His parents were told when
he was born that there was only one other person in the country with his syndrome. They
were told to do the best they could with him and they did.
Danny attended Prarie View Public schools where he was primarily in self-
contained classrooms as mainstreaming did not work well for him. When his sister went
off to college, they sent him to a group home in the same city. When that group home
shut down, Danny moved to a group home in the metropolitan area where his parents
reside. He currently resides in this group home. During the first interview he was
unemployed, now he works on a voluntary basis at a thrift shop and his parents pay him
to mow the lawn. While Danny's parents had little information about his syndrome other
parents were given information about their child's disability since birth.
Diane was born in Portland, Oregon January 1, 1981 with Down syndrome.
According to Diane's mom, they knew as soon as Diane was born that she had Down
syndrome. Before they even left the hospital she had a nurse in her room with hands full
of brochures on what they could do and where they could go for help. Ever since the
beginning, Diane's parents sought out the best programs for her. Diane's mom preferred
the individualized attention of small self-contained classrooms, where the teachers were
speech-pathologists. Diane spent two years in a public school, which was not in her
neighborhood, in an experimental mainstreaming program. This program proved to be
disastrousus" Her parents did not have a choice over Diane's placement in this program
and eventually moved her to the Metro Private Special School.
One thing obvious about Diane is that she wears her emotions on her sleeve. She
smiles when she is proud of herself, when she is surrounded by her family and friends,
and when she talks about her passions. When she is frustrated, sad, or just having a bad
day, that shows on her face, as well. Diane thrives when she is around people like her --
when she feels accepted. Diane is creative. She is a poet, a dreamer and a romantic. She
has a rich vocabulary and the ability to describe things with much detail. She is a hard
worker and seeks perfection in those activities she pursues. She lives with her parents and
works at a grocery store in the community. While Diane is an easy person to read, Becky
is a bit more deceptive.
I first met Becky when I started doing this project. At first, she appeared shy. She
did not say much nor did she establish eye contact. Her parents told her that I would like
to ask her a few questions, and I thought she felt obligated. But she said O.K. and we sat
in the corner of a bowling alley that cold winter day. We talked for a while and her mom
walked over a couple of times to see how things were going. During the course of the
interview, I was repeating myself, clarifying questions and doing a lot of probing. When
Becky talked about things she liked, her face lit up and she was articulate. At other times
during the interview however, she seemed withdrawn. Upon questioning her father
during the verification interview, I learned that Becky has a pervasive developmental
disorder, or a form of autism. I was immediately surprised by this diagnosis, because
during my interview with her she exhibited very few of the stereotypical behaviors that
often accompany this disorder. I was impressed by her ability to communicate and to be
actively engaged in the interview process. The week following my second interview with
Becky, I had the opportunity to interact with her on a few occasions. During this time, it
was as though I met a new friend. She knew who I was and would approach me when she
saw me. One of Becky's strengths and interests involves math calculation. Once Becky
learned of my age, she calculated how old I would be in 2011, 2025, etc, then she told me
whenever she saw me.
Becky was adopted by her current parents at the age of one in Boston. She has lived
with this family for 21 years all around the world, Germany, New Mexico, Oregon and
Praire View. Since the third grade, Becky was mainstreamed for the non academic
subjects and was in a self-contained classroom the rest of the time. She lives with her
parents and works at a sheltered workshop.
Carol is the other person who I met in the course of this project. I am surprised
that I have not met Carol before as she has been enrolled in area programs most of her
life. Carol was born in the state capital and moved to the River City when she was five.
From what I have seen of Carol, she is very much focused on the task at hand. During our
interview, Carol was very attentive to each question I asked. Her answers were brief and
to the point. There typically was no need to probe because she answered questions
directly. I could also tell that she was not going to expand on any topic in great detail.
Carol seems to take after her mom. Carol's mom's answers were also direct and short.
Her mom describes Carol as being very smart, very caring and hurts deeply when she
get's hurt. Carol lives in a group home and works at a sheltered workshop, a different one
from the one where Becky works.
Carol and Becky's timidness was expected as neither of them knew who I was prior
to this project, Jessica on the other hand has known me for about six years. Jessica is
quiet. She may not say much, but her presence is felt in a room. She looks up and smiles
at you when you least expect it indicating that she knows who you are and she is happy
to see you. According to Jessica's mom, Jessica's job coach says that her shy demeanor
masks her true abilities. Her looks have always been deceiving. Jessica was born 21 years