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Marsh, James Peter
Voices from a marginalized population
h [electronic resource] :
b life histories of individuals with physical impairments /
by James Peter Marsh.
[Tampa, Fla.] :
University of South Florida,
Thesis (Ph.D.)--University of South Florida, 2005.
Includes bibliographical references.
Text (Electronic thesis) in PDF format.
System requirements: World Wide Web browser and PDF reader.
Mode of access: World Wide Web.
Title from PDF of title page.
Document formatted into pages; contains 197 pages.
ABSTRACT: Individuals with physical impairments have been marginalized and discriminated against since the social identification of these individuals occurred as a sub-group within society. While much has been done to resolve prejudice against individuals with physical impairments, more needs to be done to decrease, or at least deter, discrimination and prejudice against individuals who have been marginalized. The purpose of this study is to give four individuals with physical impairments the opportunity to tell their stories. Through the telling of these stories, I believe others can identify with these individuals, and thereby, help decrease discrimination against individuals with physical impairments.Life history has been shown to be an effective method to study individuals with impairments. In order to facilitate understanding of what it is like to be an individual with a physical impairment, four individuals with physical impairments shared their life histories.Research questions include: How do these individuals with physical impairments understand and give meaning to their lived experiences? and How do participants in this study who have congenital disabilities differ from those who have acquired disabilities in the ways they understand and give meaning to their lives? The research questions and parameters of interest are intended to develop and share what it is like to be an individual with a physical impairment. The researcher has known each of the participants for at least ten years. The participants include a 33 year old male with a congenital disability who is white, a 32 year old female who acquired a disability 12 years ago and who is African American, and a married couple who are 62 and 63 years old, one with a congenital disability, the other acquired a disability when she was 14 years old.
Adviser: Dr. Ann Cranston-Gingras.
x Special Education
t USF Electronic Theses and Dissertations.
Voices From a Marginalized Population: Life Histories of Individuals With Physical Impairments by James Peter Marsh A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Special Education College of Education The University of South Florida Major Professor: Ann Cr anston-Gingras, Ph.D. James L. Paul, Ed.D. Robert F. Dedrick, Ph.D. Sara E. Green, Ph.D Date of Approval: January 21, 2005 Keywords: physical impairment, assistiv e technology, life history, marginalized individuals Copyright 2005, James Peter Marsh
Dedication This study and dissertation are the essen ce of four people who were willing to share their lives, their successes and failures, an d what it is like to be an individual with a physical impairment. To Mike whose wit and humor are so sim ilar to mine that it is almost scary; To Theresa who I could not admire more; To Ellen whose forthrig ht objectivity is exceeded only by her dedication to family; To Bill whose acerbic eye allowed me to see closest what it is like to be an individual with a physical impairment. I am forever in their debt as friends and confidantes. My life is richer for knowing each of them. I hope the impact they have on other pe ople is as powerful as the impact they had on me.
Acknowledgements Dr. Jim Paul, doctoral program director professor, mentor, committee member, and friend, encouraged me to pursu e knowledge and truth honestly. Dr. Ann Cranston-Gingras, the quintesse nce of a major professor, extended phenomenal expertise, combined with unendi ng patience, as she skillfully guided me through the doctoral program. Dr. Robert Dedrick taught me acc ountability in thinking and writing. Dr. Sara Green instilled in me a commit ment to the disabili ty movement while artfully directing me to wards special education. Dr. Michael Angrosino, always availabl e, and always prompt with valuable critiques and insights, taught me the art of qualitative inquiry. The doctoral experience has been an ove rwhelmingly positive experience due in large part to our doctoral cohort, the future : Dr. Tandria Callins, Dr. Michelle Duda, Dr. Kati Fowler, Dr. Ben Graffam, Dr. Julie Greiss, Dr. Sara h Semon, Dr. Dee Ubinas, and for her editing and patience, the future Dr. Karen Voytecki. My wife, confidante, and friend, Nancy Ma rsh, proof read everything I wrote with a keen, unbiased, critical style. As with th e rest of my life, she positively facilitated improvements.
Table of Contents ABSTRACT iv Chapter One: INTRODUCTION 1 A Justification 2 Research Questions 3 Method 4 Participants 6 Analysis 7 Credibility 7 Transferability 8 Discussion of Ensuring Chapters 8 IRB and Informed Consent 9 Chapter Two: INDIVIDUALS WITH PHYSICAL IMPAIRMENTS: A MARGINALIZED POPULATION 10 Students with Physical Impairments in the Educational System 10 Historical Context: The Disability Rights Movement 12 Medical Model vs. Social Model of Disability 15 Definitions 18 Physical Impairment Defined 21 Contextual Factors 23 Assistive Technology Defined 27 Use of Assistive Technology for Indivi duals with Physical Impairments 28 Chapter Three: METHOD 31 Why Life History 31 Pilot Study As Guide 32 Background 32 Pilot Study Protocol 34 Protocol for Main Study 38 Self-Descriptors 40 Analysis 40 Sampling 42 Participants 42 Triangulation 43 Peer Review 43 i
Audit Trail 44 Referential Evidence 44 Transferability as Verisimilitude 45 Researcher Veracity 45 Chapter Four: MIKE: WHAT IT IS LIKE TO BE DIFFERENT 48 Self Description 62 Reflections and Response to Mi ke 63 Chapter Five: THERESA: A HALO WITH A TILT 67 Background 67 Peers with Disabilities 71 Age and Disability 71 Race and Disability 73 Gender 74 Acquired Versus Congenital 75 Disability and Assistive Technology 75 Blending It All Together 76 Disability and the Civil Rights Movement 79 Disability and the System 81 Individual before Disability 82 Summary 84 Self Description 84 Reflections and Response to Theresa 86 Chapter Six: ELLEN: FAMILY IS EVERYTHING 90 The Accident 91 The Fall 91 The Hospital 92 Retrospection 96 Family Life 97 The Early Years 97 Adolescence 99 Civil Rights 100 The Medical Model 101 Travel, Vocation, and Employment 101 Starting a Family 105 Advocacy 106 Gender and Disability 108 Age and Disability 108 Self Description 109 Reflections and Response to Ellen 110 ii
Chapter Seven: BILL: IM NOT CRIPPLED 113 Family and the Early Years 114 The Medical Model 116 Education 118 Vocation and Employment 121 Civil Rights and Advocacy 123 Politics 125 The Future 126 Self Description 126 Reflections and Response to Bill 127 Chapter Eight: SUMMATIVE RESPONSES 132 Understanding and Meaning to the Lived Experience 133 Family Life 133 Race, Culture, Ethnicity 139 Gender 142 Age 145 Assistive Technology 147 Congenital Versus Acquired 148 Self Description 150 Medical and Social Model 151 Individual Model 153 Lessons Learned 154 Co-Construction 158 Future Considerations 160 REFERENCES 163 APPENDICES 175 Appendix A: Self Data Template 176 Appendix B: Mikes Self Data 177 Appendix C: Theresas Self Data 179 Appendix D: Ellens Self Data 181 Appendix E: Bills Self Data 183 Appendix F: Informed Consent for Life History 184 ABOUT THE AUTHOR End Page iii
Voices from a Marginalized Population: Life Histories of Individual s with Physical Impairments James Peter Marsh ABSTRACT Individuals with physical impairments ha ve been marginalized and discriminated against since the social identif ication of these individuals occurred as a sub-group within society. While much has been done to resolv e prejudice against individuals with physical impairments, more needs to be done to decr ease, or at least dete r, discrimination and prejudice against individuals w ho have been marginalized. The purpose of this study is to give four individuals with physical impairmen ts the opportunity to tell their stories. Through the telling of these stor ies, I believe others can id entify with these individuals, and thereby, help decrease discrimination ag ainst individuals with physical impairments. Life history has been shown to be an e ffective method to stud y individuals with impairments. In order to facilita te understanding of wh at it is like to be an individual with a physical impairment, four individuals with physi cal impairments shared their life histories. Research questions include: How do thes e individuals with physical impairments understand and give meaning to their lived expe riences? and How do pa rticipants in this study who have congenital disabi lities differ from those who have acquired disabilities in the ways they understand and give meaning to their lives? iv
The research questions and parameters of interest are intend ed to develop and share what it is like to be an individual with a physical impairment. The researcher has known each of the participants fo r at least ten years. The pa rticipants include a 33 year old male with a congenital disability who is white, a 32 year old female who acquired a disability 12 years ago and who is African American, and a married couple who are 62 and 63 years old, one with a congenital disabi lity, the other acquired a disability when she was 14 years old. The researcher shares his responses and reflections, thereby becoming the fifth participant in the study. Because this type of research depends upon verisimilitude, the responses to the research questions are presented for each indi vidual. Each participan t defines areas of his or her life that best defines how that person constructs his or her identity and what part the physical impairment plays in that definition. The participants feel that there are some differences between individuals with congenital physical impairments and those with acquired physical impairments. The participants relate that individuals with acquired physical impairments have greater access to funds and equipment based on their perception of how funding agencies provide services and equipment to individuals with physical impairments. The participants also feel that there is a greater stigma associated with ha ving a congenital physical impairment compared to having an acquired physical impairment. Recommendations for future research are offered. v
1 Chapter One INTRODUCTION Individuals with disabilities have be en described in various ways in the professional and research lit erature. Different voices ha ve described the lives of individuals with physical impairments. In th e early years, scholars spoke on behalf of individuals with physical impairments, w ith impairments that ranged from spastic quadriplegic cerebral palsy to va rying forms of paralysis. All of these impairments were readily apparent to the casual observer. In 1978, Weinberg and Williams wrote about How the Physically Disabled Perceive Thei r Disabilities. Beatri ce Wright (1983), an early scholar of individuals with physical impairments, wr ote one of the first books on physical disabilities from a ps ychological perspectivewhat it is like to be an individual with a physical impairment. Erving Goffman (1 963) described the stigma associated with individuals with physical impairments. Mitc hell and Snyder (1997) pr ovided an excellent historical perspective of phys ically impairing conditions and the individuals affected by these conditions. It is difficult to determine exactly wh en individuals with physical impairments demanded a voice or when the disability rights movement started. It may have been in 1984 when the National Council on Disability b ecame an independent federal agency, or in 1986 when Irving Zola founded the Society fo r Disability Studies (Fleischer & Zames,
2 2001). Regardless, the mid eighties sounded the rallying cry for individuals with physical impairments to speak for themselves. A Justification Advocates within the disabi lity movement maintain that individuals with physical impairments have been marginalized and discriminated against since the social identification of these indivi duals occurred as a sub-group within society. Murphy, R., Scheer, Murphy, Y., and Mack (1988) desc ribe how individuals with physical impairments have been forced to th e periphery of soci ety resulting in a non-entity status. These individuals are talked about, rather than talked to (Cah ill & Eggleston, 1994). In his seminal work on stigma, Goffman (1963) depicted these physical deformities as abominations of the body (p. 4) and refe rred to these attributes as deeply discrediting (p. 3). Much has been done to resolve prejudice against individuals with physical impairments (see, for example, Barton, 1996 and Marks, 1999). However, more needs to be done to decrease, or at least deter, discrimination and prejudice against individuals with physical impairments. The disability rights movement, empo wering the voices of individuals with disabilities, is the historic al landscape within which the present study was conducted. Central to the disability rights movement ha s been enabling individu als with disabilities to speak for themselves and be heard on all matters affecting their lives. In this study, individuals are provided an opportunity to speak directly about matters that have led them
3 to understand their lives in par ticular ways and to develop stra tegies for coping with lifes demands. In this study I look at culture as perceived by individuals who have been marginalized. Observing the world as they expe rience it helped provide a better picture of some of the centrifugal social forces such as labeling and stigma that hold individuals with physical impairments at the margins of society. This study provides a view of the social dynamics of their world and a basis for deconstructing the power arrangements of the world in which they live their lives. Among the issues explored, two hold particular interest to me because of my background as a physical therapis t and as an assistive tec hnology provider for individuals with physical impairments. The first are the differences between an individual with an acquired physical impairment compared to an individual with a congenital impairment. The second is the role that assistive tec hnology played in the lives of these four individuals with physical impairments (B ryant & Bryant, 2003; Church & Glennen, 1992; King, 1999). Research Questions We have a lot of research on the social construction of self in individuals who develop typically and have no severe physic al disability (Erikson, 1963). We know less about the development of self in individuals with physical impairments, the ways they interpret their lives, and the ki nds of attributions that give meaning to their social world (Dupont, 1989). Several ecological variables su ch as the limitations on exploring the
4 physical world, attitudes of others toward th eir disability, and thei r interactions with assistive technology may influence their de velopment of self. This study asks two questions: How do these individuals with physi cal impairments understand and give meaning to their lived experiences? How do participants in this study who have congenital disabilities differ from those who have acquired disabilities in the ways they understand and give meaning to their lives? Method I am a physical therapist and have wo rked with individua ls with physical impairments for many years. At one point in my career I became aware that students with physical impairments who had more sophist icated and extensive assistive technology equipment seemed to enjoy a higher social st atus among their peers, teachers, family and friends. I became interested in examining specif ically how identity might be impacted or shaped by circumstances of family life, cultu re/race/ethnicity, gender, age, and access to assistive technology for individu als with physical impairments. I also wanted to learn whether individuals born with the physical impairments defined themselves differently than those who acquired physical impairments later on in life. A life history pilot study was conducted from January, 2004 through April, 2004. Based on the protocol for the pilot study ou tlined and described in Chapter 3, three
5 additional life histories were conducted for th e study in order to furt her explore areas of interest. The results of the pilot study were then include d as part of the study. Life histories have re-emerged as a vi able research method within qualitative inquiry to give voice to indivi duals and groups in society who have been marginalized (Angrosino, 2002; Angrosino & Mays de Per ez, 2000; Denzin & Lincoln, 2000; Lincoln & Guba, 2000; Lindlof & Taylor, 2002). Angros ino (1998) effectivel y incorporated life history as a research method in his studies of individuals with mental retardation who were also mentally ill. This study utilizes life history as a means and opportunity for individuals with physical impairments to speak for themselves. Because I have known each of the participants for many years, we co-construct a narrative that is unique based on our previous and present relationshi ps (Fransella, 2003; Kelly, 1991). I bring my own constructs to the interviews and to the life history process. The participants also bring their respective c onstructs to the interviews. The combination of each participant and the researcher, as well as the coordination of all five participants in the study (the researcher is included as a participant), culminates in a co-construction unique to the time, place, and participants. Th e major advantage of including friends as participants in this life hist ory study is the unique in-depth narrative that otherwise would not be possible. Although our long-standing relationship sign ificantly adds to the study, that same prior relationship and prior know ledge carries certain risks. These risks include omissions of events or facts due to assumptions on the pa rt of the researcher or participant that the topic or occurrence is common knowledge be tween the participants in the discussion.
6 Similarly, events may be reported as having occurred based on the researcher and the participant having been at the same event co incidentally, but not having interacted. An example might be both attending an event a dvocating for the rights of individuals with physical impairments, but each rememberi ng the event differently; followed by the researcher reporting the event as he remember s it without receiving verification from the participant because the event is assumed knowledge. While friendship is an integral contributo r to this research, that same friendship between the researcher and the participant has the potential to act as a barrier of information (Seidman, 1998). There may be certa in feelings or interpretations that the participant may be unwilling to share for fear of jeopardizing the resear chers opinion of the participant. Likewise, the researcher may phrase questions, guide the discussion, or even interpret events and conversations that reinforce a preconceived perception of the participant or of the relationship. Participants I have known each of the four individuals at least ten years in my work as a physical therapist, durable medical equi pment provider, and/or colleague through advocacy agencies for individuals with impair ments. The four individuals vary in age, gender, race/culture, family life, and the type and etiology of physical impairment whether the impairment is congenital or acquired.
7 Analysis These interviews produced a rather dense sc ript of the participants experiences of life and meaning. The data were analyzed in two stages. I approached the first stage of data analysis through coding and re-coding in to categories (Charm az, 2000; Glaser & Glaser & Strauss, 1967; Strauss & Corbin, 1990). Themes in each participants script were compared for similarity and consistenc y and overarching themes were constructed (Charmaz, 2000; Glaser & Strauss, 1967; Strauss & Corbin, 1990; Weitzman, 2000). Based on the coding and categorization of the data obtained, I emphasized what I determined to be the salient points of each in dividuals life history as they were described to me. Verification of this coding has been obtained by comparative coding of the data by a colleague, a doctoral candidate trained in qualitative methods of inquiry. In the final interpretive analysis, I draw conclusions about how well the study answered the research questions. The second stage of analysis involved the researchers re flections on each life history. As the fifth particip ant in this study, I include my reactions, responses, and reflections to each of the interviews (D enzin & Lincoln, 2000; Ellis & Bochner, 2000; Gergen & Gergen, 2000). Credibility Using the pilot study as a trial base for the study, issues regarding credibility of the study are discussed. Various forms of tria ngulation as well as peer review and an
8 audit trail for the entire study are described. Referential evidence and researcher veracity are described as forms of authenticity. Transferability Transferability in life history research relies primarily on the principle of verisimilitude. What each reader brings to th e reading of this study will influence what each takes away from the study. What appears to be true and real may differ depending upon the readers background and how each reader defines his or her own sense of self. Discussion of Ensuing Chapters In Chapter II, a historical background of individuals with physical impairments is presented including definitions pertinent to the study. These terms include congenital physical impairment, acquired physical impa irment, handicap, assistive technology, race, culture, and family. Cognitive ability of the individuals in this study is discussed. In addition, defining individuals with physic al impairments from a medical model perspective is contrasted w ith the social model construc t. Finally, individuals with physical impairments are discussed in rela tion to the educationa l systemfrom centerbased schools, to self-contain ed classrooms, to fully incl uded educational environments in regular schools, to post hi gh school graduate experiences. Chapter III provides further depth and desc ription of life histor y interview as the preferred method of qualitative inquiry for this study. The site, sample selection, and interview process is discussed. Trustworth iness (Lincoln & Guba, 1985) and various forms of triangulation in relati on to reliability related to this study are also described.
9 The life histories of the four participants are shared in chapters IV, V, VI, and VII. Based on the coded life history conducted wi th Mike in the pilot study and relayed in chapter IV, the life histories of Theresa, Ellen, and Bill are shared and described in chapters V, VI and VII in a revealing style th at allows each participan t to speak in his or her own voice. At the conclusion of each of the participants chapters, I provide a response and reaction to each life history. In Chapter VIII, I present summary re sponses and my summative reactions to narratives from the field. My reactions to interviews and to the participants, as well as the personal meaning of the experience, are presen ted for review and criticism. A discussion of how well the study addresse d the research questions l eads to recommendations for future research for individuals with physical impairments. IRB and Informed Consent In addition to complying with the Institu tional Review Boards criteria for human subject investigation, each participant was aske d to complete an informed consent form. Participants were also give n periodic opportunities to re view their interviews to authenticate veracity. All id entifying nomenclature included in the study, such as personal names, site locations, and locales were changed to prevent disclosure of participants identities.
10 Chapter Two INDIVIDIUALS WITH PHYSICAL IMPAIRMENTS: A MARGINALIZED POPULATION Students with Physical Impairme nts in the Educational System Today, the educational placement for individuals with physical impairments runs the full gamut from self-contained classrooms at center-based schools to full inclusion at regular schools where the only visible diffe rence between individuals with physical impairments and regular students may be th e method of mobilityone walks to classes, the other rolls. In the public school system, placement for a student with a physical impairment is determined by an evaluation process that usually includes an educational assessment, a psychological evaluation, a medical assessment, and a social history (Education, 2003; Kranzler, 1997). Predicated on guidelines set forth in IDEA (P.L. 10517), students with physical impairments have their educational needs met in the least restrictive environment (C rockett & Kauffman, 1999). The educational setting for individuals w ith physical impairments covers a wide range, contingent upon the evaluations and the staffing teams recommendations. For students who require the greatest amount of edu cational, medical, social and/or emotional assistance, a self-contained classroom at a cente r-based school may be the least restrictive educational environment. Students with physical impairments who require less
11 assistance, but still need a center-based school environm ent, may be mainstreamed throughout the school curriculum for recreational, diversiona l, or vocational needs. Some school districts physic ally locate self-containe d classrooms for students with physical impairments on regular educati on campuses, encouraging interaction with peers who do not have disabilities (Jenki nson, 1997). Some private schools maintain separate school facil ities for individuals w ith physical impairments at the request of parents and advocates (School, 2003). These pare nts and advocates feel that a separate facility is safer and that a child with a physical impairment has more social and extra curricular opportunities going to the prom, running for student government, etc. than if the student with a physical impair ment attended a regular school. As the mainstreaming model of the 1980s gave way to the inclusive model of the 1990s (Barton, 1996; Swann, 1985), more students with physical impairments were seen in regular educati on, either within sp ecial classes for students with varying exceptionalities or in the regular classroom (Stafford, Williams, & Heller 2001). As we proceed in the 21st Century, perhaps the equal status for individuals with physical impairments will become more of a reality through education. An individual with a physical impa irment may be limited in post graduation opportunities. In a study done in 1990, Li ebert, Litsky, and Gottlieb found that postgraduate vocational opportuni ties for students with severe physical impairments were determined more by social contacts of pare nts than by ability or disability of the individual. While many educat ional programs for individuals with physical impairments are geared toward vocational rather than academic futures, job opportunities and
12 placements appear to be somewhat limited for individuals with physical impairments. Higher education and continuing education may prove to be the viable alternative for individuals with physical impairments due to the liberal nature of these institutions and their ability to accept differen ces more readily. Individuals with physical impairments appear to be headed towards acceptance a nd integration. Headway has been made in education. Through education, progress can be made within society. Assistive technology appears to be facilitating change and in creasing opportunities fo r individuals with physical impairments. Little has been done to explore varying perspec tives of individuals with congenital physical impa irments compared to indivi duals with acquired physical impairments. While society appears to be more willing to accept responsibility for the differences created between people who are di fferent and those who are the same, these differences need to be explored and define d in order to provide an understanding of our differences. This study is intended to assi st in bridging that gap in understanding. Historical Context: The Di sability Rights Movement Much of the progress made toward full social/economic participation by individuals with physical impairments can be credited to the Disability Rights Movement. The main body of literature related to physic al impairments is contained within the Disability Rights Movement. There have been few studies done concerning the demographics and distribution of individua ls with physical impairments. The primary emphasis has been on the psychological as pect of having a physical impairment (Weinberg and Williams, 1978; Wright, 1983). Goffmans seminal work on stigma in
13 1963 served as the base for the social constr uct of disability. Work s that followed often discussed the social aspects of having a physical impairment. Cahill and Eggleston (1994) described the emotional response of being in a wheelchair in public. Berube (1996) and McDermott (2000) described a parents perspective of what it is like to have a child with a disa bility. While Murphy (1990), an academician, described the social response to an individual with an impairment from the standpoint of one who lives th e life of an individual with an impairment; Sacks (1998), also an academician and advocate for individual s with disabilities, described the personal response to societys treatment of individuals with physical impairments as he became an individual with a physical impairment fo r an extended temporary period of time. Thomson (1997) included the feminist perspectiv e of disability within American culture and literature. Marks (1999) discussion about the disabling environment and the limitations that society imposes on individuals with disabili ties reinforced the social construct of disability described by Barton ( 1996), Oliver (1996a), and Barnes (1996). Priestley (2003) attempted to take the em phasis away from the disability and draw similarities between the mainstream culture and individuals with physical impairments by emphasizing lifes stages that are common to both groups. Priestleys life course approach acknowledged the individual model of disability that describes each person moving through their respective st ages, but maintained that collective gains are greater when commonalties are compared and shared. Although many events and individuals we re instrumental in the historical underpinning of the disability rights move ment, the formation of the Centers for
14 Independent Living (CILs) in 1972 appears to represent the time wh en individuals with physical disabilities received public acknowledgement of thei r needs and of the quest for independence and equal status (Fleischer & Zames, 2001; Marks, 1999). The impact of activities preparatory to the disability right s movement prior to the formation of CILs did not receive comparable public support. Even though Franklin Delano Roosevelt contracted polio in 1921, establishe d Georgia Warm Springs Foundation for Rehabilitation in 1927 and became President in 1932, individuals with disabilities received minimal public awareness of thei r concerns (Houck, 2003; Krauthammer, 1997; Thomas, 1997). As testimony to the lack of groundswell fo r the disability rights movement, the League of the Physically Handicapped was or ganized in 1935, but was disbanded in 1938 (Fleischer & Zames, 2001). However, i ndividual and group e fforts on behalf of individuals with disabilitie s continued. In 1948, Tim Nugent effectively established wheelchair accessible facilities a nd sports for people in wheelc hairs at the University of Illinois (Fleischer & Zames, 2001). In 1949, th e United Cerebral Pals y Association, under the leadership of Leonard Goldenson, presid ent of the board of ABC Broadcasting and father of a child with cerebral palsy, united a ll the local cerebral palsy organizations into a national effort (Goldenson, 1991). The Civil Rights Act was passed in 1964 a nd had a major impact on the disability rights movement. Parallels betw een the civil rights movement and the disability rights movement have been drawn on more than one occasion (Charlton, 1994; Fleischer & Zames, 1998). Following the passage of the Social Security Act establishing Medicare
15 and Medicaid in 1965, amendments were made in 1972 that would allow recipients of disability benefits under the ag e of 65 to qualify for Medica re (Fleischer & Zames, 2001). It was during this period of the 1970s that P.L. 94-142, The Education for All Handicapped Children Act, later known and amended as IDEA, the Individuals with Disabilities Education Act, became la w in 1975 (Orsi, 2001). Through education, individuals with physical im pairments could receive an equal education. Meanwhile, on the employment front, individuals with phys ical impairments were bolstered by the regulations of Section 504 of the Rehabilitation Act of 1973. Five years after the United Nations decl ared 1981 as the Inte rnational Year of Disabled Persons, Irving Zola founded the So ciety for Disability Studies (Fleischer & Zames, 2001). The American with Disabilities Act (ADA) became law in 1990 mandating equal accessibility, employment, and legal status for individuals with physical impairments (Congress, 1990). As ADA was im plemented, voices spoke for individuals with physical impairments. Medical Model vs. Social Model of Disability The medical model is the traditiona l model of defining and describing an individual with a disability (Marks, 1999). While Billson et al. (1996) provide an organically oriented definition of the medical model of disa bility, I prefer to put this descriptive model of disability in a reparable malf unction perspective. That is something is wrong (with the individual) and if worked at long enough, can be fixed. At the very base of this model is that someone external to the individual with a physical
16 impairment considers himself or herself a be nefactor and is determined to do something to the individual with th e physical impairment to fix the disabling condition. The onus and responsibility for the condition rests on th e individual with the physical impairment. In this case, the victim is to blame for his or her diffi culty (Marks, 1999). Ever since the inception of the disability, whether it is acq uired or congenital, the medical community has diagnosed the problem. The sole purpose and thrust of all interven tions is to help the individual with a physical impairment retu rn to a state of nor malthat is, without disfigurement and appearing to function as an individual who is able-bodied. There are two notable examples of the medical model in action. The first is the evolution of politically correct designations of individuals with physical impairments. The derogatory terms of today (e.g., cripple, sp astic) were previously acceptable clinical terms. For example, The Crippled Childrens Society and The Spastics Society in Great Britain were not only acceptable terms in th eir day, but were also used to garner sympathy and generate funds for those less fortun ate. It is exactly th at perspective of the individual with a physical impairment being me dically dependent that gave rise to charity support (and degradation) (Drake, 1996). Indi viduals with physical impairments were described by their condition. An individual w ho was paralyzed from the waist down as a result of an automobile accident was referred to as a para to connote that the individuals legs were paralyzed. Compare that designation to a quad who was someone whose arms and legs were paralyzed. A spastic quad was an individual who had spastic quadriplegic cerebral palsy, and in all probability, could not walk w ithout significant assistance, experienced difficulty with expressive language due to spastic throat musculature, and
17 required a good deal of assistance for activities of daily living. A spina bif was an individual who had spina bifida, was essentia lly paralyzed from the waist down as the result of a birth def ect (notice the term defect is short for defective). The individual with spina bifida was most likely incontinent of bladder and or bowel and was limited to a wheelchair for mobility. Nowhere is the medical model more eviden t than in the educational system. This second example of the medical model in ac tion is somewhat disconcerting because the perpetuation of the medical model is learne d and passed along to the next generation. While individuals with physical impairment s have progressed from being handicapped to being physically handicapped to being physica lly impaired and are finally, individuals with physical impairments, there is still a gr ouping and a delivery of services based on the handicapping condition (Riddell, 1996). Ev en as the educational system has progressed from having separate schools and classes for spastic children to providing service delivery systems based on the severity of the disability (i.e ., mild, moderate, or severe), it appears that th e emphasis of the educational intervention is still based primarily on the handicapping cond ition and not on the individual. The social model of disability is a cont rast to the medical model. The emphasis in the social model of disability is societys failure to provide a ppropriate services and adequately ensure the needs of disabled peopl e are fully taken into account in its social organization, according to Oliver (1996b, p. 32). In the social model, fault of the physical impairment is not at issue. The physical impairme nt is not considered an aberrant condition that requi res fixing. Rather, the onus is on society to make
18 accommodations that will facilitate acceptan ce of individuals with physical impairments as equals. There is a long history of the social c onstruct of disability (Barnes, 1996). Based in part on the industrial revolution and on th e inability of individuals with physical impairments to compete equally in producti on assembly, a less-than-equal status was created for individuals with physical im pairments (Finkelstein, 1980). Because the differences of the handicapping condition were readily apparent to the casual observer, individuals with the physical impairments were castigate d for their differences, rather than accommodated and accepted. That is the summary of the social model of disabilityarrangements for equal status fo r individuals with phys ical impairments are created and maintained and the commonalities among and between individuals with and without disabilities ar e emphasized and encouraged. The disability rights movement based on the social model of disability is quite similar to the platform of the civil rights movement. Definitions There has been considerable inconsiste ncy in and confusion over, the use and definitions of terms related to the concept of disability. The terms handicapped, disabled, and impaired have often been used interchangeably. The terms physicallyhandicapped physically-disabled physically-challenged, and physically-impaired have been variously applied to i ndividuals, more in an attempt to maintain politically acceptable terminology than as a way to accura tely describe indivi duals with physical
19 impairments. (See Sutcliffe, 1972 in Physiotherapy as an example of referring to individuals with physical impairments as physically handicapped and see Schoenman, 1995 as an example of referring to indi viduals with physical impairments as physically disabled persons) In the 1980s, however, the World Hea lth Organization (WHO) differentiated among these terms in the International Classi fication of Impairments, Disabilities, and Handicaps (ICIDH). An impairment is defined by the World Health Organization as any temporary or permanent loss or abnormality of a body structure or function, whether physiological or psychological. An impairment is a disturbance aff ecting functions that are essentially mental (memory, consciousne ss) or sensory, internal organs (heart, kidney), the head, the trunk or the limbs. A disability is a restriction or inability to perform an activity in the manner or within the range considered normal for a human being, mostly resulting from impairment. And a handicap is the result of an impairment or disability that limits or prevents the fu lfillment of one or several roles regarded as normal, depending on age, sex and social a nd cultural factors (W.H.O., 1980; W.H.O., 2001). The preferred designation is to refer to the individual fi rst and the condition second, i.e., an individual with a physical impairment (Fernald, 1995; Lehrer, 2004). When clarifying the distinctions among thes e terms, this tripartite conception has been criticized by the proponents of the Social Model of Disability and the Union of Physically Impaired Against Segregation (UIPAS). UPIAS was specifically concerned with the limitations that society placed on i ndividuals with physical impairments which prohibited participation in mainstream social activities (ENABLEnet, 2004).
20 In response to these concerns, a new set of definitions (ICIDH-2) has been introduced by WHO. According to the ICIDH2, the disability experience is composed of three dimensions: impairment, activity, and participation. These dimensions were defined at the Fifty-Fourth World Health A ssembly of the World Health Organization: Systematically groups domains of health and health related domains for a person in a given condition (i.e. what individuals can do or do when they have a disease or disorder). The body component defi nes functional structures of the body system. The activity and participation co mponent covers a range of life domains in which individuals may engage (e.g. learning, moving around, self-care, work, etc). Capacity and performance of each individual can be coded in a defined domain. ICIDH-2 also lists environmenta l factors that interact with all these domains (W.H.O., 2005). By using this classification system, im pairments are viewed as health-related outcomes and not disabling or handicapping conditions. These health-related outcomes are norm-referenced on the mainstream population, thereby in directly including individuals with physical impairments. By in cluding the environmenta l factor associated with all three domains, the emphasis shifts away from the medical model and strongly accentuates the social model of disability (Turmusami, 2003). However, until the service delivery system catches up with the definitions in ICIDH-2, individuals with physical impairments remain at a disadvantage. Almost all service delivery systems such as Vocationa l Rehabilitation and Developmental Services (part of Health and Rehabilita tive Services) continue to pr ovide services to individuals with physical impairments based on their me dical diagnoses (Florida Developmental Disabilities Council, 2004). The purpose of this study is to give f our individuals with physical impairments the opportunity to tell their stories. Speci fically, I explore the impact of assistive
21 technology and contextual vari ables (age, sex, race, cultur e, ethnicity, and family structure) on activity and part icipation in the lives of the four study participants and the way in which impairment, activity, and pa rticipation have contributed to each participants sense of self. Physical Impairment Defined Physical impairments have been traditio nally defined based on the medical model of disability, primarily by defining the part(s ) of the body that do not perform in what is considered a normal coordinated moveme nt (Bobath, 1967; Council, 2001; Myers & Shapiro, 1999). These impairments may range fr om mild, where fine motor activities are impaired (Abbruzzese & Berardelli, 2003; AOTA, 1997; Ayres, 1979; Case-Smith, 2002 Schwellnus & Lockhart, 2002), to severe, wh ere total assistance is required (Bidabe, Barnes, & Whinnery 2001; Cook & Hussey, 2002) In addition, the individual may have problems with communication (Lloyd, in pres s) and self-help sk ills (Bundy, Fisher, & Murray 2002; Finnie, 2000; Kellegrew, 1998). Varying levels of assistive technology may be required dependent upon what portion(s) of the body are affected by the physical impairment (Iannaccone, 1992). The causes for the physical impairment can be genetic. or may be acquired (Best, Heller, & Bigge, 2005; Bowman, McLone, Gr ant, Tomita & Ito, 2001; Chapman, 2002; Finnie, 2000; Kaye & Longmore, 1997; LaPlan te, Carlson, Kaye & Bradley, 1996; Msall & Tremont, 1999; Myers & Shapiro, 1999; Ob ringer & Coffey 2003; Uyanik, Bumin, & Kayihan 2003; Willard-Holt, 1998). The Oxford English Dictionary on-line (OED)
22 defines congenital as existing or dating fr om one's birth, belonging to one from birth, born with one (a congenital disease or defect ). Likewise, OED offers the third definition of acquired as a developmen t in an individual occurr ing during its lifetime through the influence of its environment. By combin ing these terms with an individual with a physical impairment, the terms used to descri be an individual with a physical impairment has been categorized in one of two ways. E ither the person is born with the impairment, in which case the person is said to have a congenital physical impairment, or the person incurs a physical impairment as the result of a life-altering event, and is said to have an acquired physical impairment. The federal definition of a physical impai rment is described as an orthopedic impairment, impairments caused by congenital anomaly, impairments caused by disease, and impairments from other causes (U.S.D.O .L., 1987). In the context of this study, I define an individual with a physical impairme nt as a person whose di sability is readily apparent to the casual observer and whose impa irment interferes with social integration. While there may be similarities in di sease or medical condition presentation, no two individuals with phy sical impairments can be considered identical due to the inherent individual nature of each person (Keefe & Jenkins, 2002), and because the medical condition affects each individual differently (Council, 2001). Consequently, it is the evolved social model of disabi lity reflected in the definition of impairment by the World Health Organization that ta kes precedence and priority over the medical model of disability in this research. This perspective is reinforced by each of the participants as well as by the researcher.
23 Cognitive ability varies in individuals with physical impairments, just as cognitive ability ranges for any other group in society. In this study, cognitive refers to the action or process of knowing. The indivi duals in this study demonstr ate the process of knowing by effectively describing his or her relationship to the environment, thereby demonstrating cognitive abilities that allow each individual to function within the mainstream of society. Contextual Factors According to the Florida Developmental Disabilities Council, mo st agencies that collect statistics on individuals with disabilities approximate th at ten per cent of the total population in any given area within the United St ates has a disability. By combining this generalization with the lack of agreement of what constitu tes a disability, much less a physical impairment, and it becomes evident th at descriptive statis tics may assist in providing a general descript ion of individuals with physical impairments, but generalizations to target popul ations proves prohibitive. For example, LaPlante (1992) repor ted that 17.4%, or 5,873,000, of the 36.1 million individuals with disabilities in the United States, had an orthopedic (or physical) impairment. Previous to that, Laplander ( 1988) described 13.9% of individuals less than 69 years of age with physical impairments had disabilities related to the back and spine; while 18.1% of those with physical impairm ents under the age of 69 had disabilities relating to physical impairment s other than those relating to the back and spine. LaPlante (1996) limited the number of individuals who were disabled as the result of paralysis to 1.8% of the total number of people who were disa bled in the United Stat es at that time. In
24 the same study, LaPlante described 14.1% or 8,806,000 individuals as having orthopedic impairments. These two categories could r oughly be equated with individuals with acquired physical impairments being equal to those with paralysis, and those with orthopedic impairments equaling individuals with congenital physical impairments. Interpreting the data from the U. S. Census Bureau (2005) provides more definitive demographics pertinent to this study. The population for the United States in 2003 was reported at 262,582,164. Five pe rcent of the population, or 12,766,882 individuals, were between 16 and 64 y ears old and reported having a physical impairment. Of these individuals with physical impairments, 9,693,540 were male; 4,038,381 reported that they were empl oyed, and 5,655,159 were not employed. The females with physical impairments between th e ages of 16 and 64 years of age numbered 519,327; 151,188 were employed, and 368,139 were not employed. Of this same age group of individuals with physical impairmen ts, 9,510,262 listed their ethnicity as white and 2,036,574 described themselves as either A frican American or Black. These figures are provided for background onl y and are not intended to fac ilitate conclusions of any kind. Factors that may contribute to feelings of marginaliz ation for individuals with physical impairments include age, gender, race, culture, diversity, and family life. Researchers have contributed to each of these areas throughout the disability rights movement. Noonan, et al. (2004) and Neath (19 97) provide interesting studies of gender perspective relative to physical impairments. Neath (1997) de scribed the social causes of impairment and disability from the femini nist perspective and explained how these
25 causes contributed to the abuse of individua ls with impairments. Noonan et al. (2004) theorized a system of influences around a core of the dynamic self for 17 highly achieving women with physical disabilities. Th ese influences on self include identity constructs (disability, gender, race/ethnicity/culture, personality), personality characteristics, and a belief in self. Indications are that a large part of identi ty is socially constructed. Using Eriksons theory of psycho-social development as a ba se, the fifth stage of development, identity versus role confusion, implie s a relationship with the envi ronment. The environment is only one component that contributes to the creation of self. In addition to social competence as an indicator of self, physical competence, conceptual intelligence, and emotional competence all play a part in th e personal competence of an individual. Borrowing from a model of personal compet ence outlined in Raymond (2004) and based on AAMR (1992), Greenspan and Granfield (1 992), Gumpel (1994), Mathias (1990), McGrew and Bruininks ( 1990), and McGrew, Bruininks and Johnson (1996), the formation, creation and maintenance of self is re flected in the individual s feelings of self which, in turn, are controlled by feelings of physical compet ence, social competence, and emotional competence. For the purposes of this study, self will be defined as what one is at a particular time or in a particular as pect or relation; one's nature, character, or (sometimes) physical constitution or appearance, considered as different at different times. Oftentimes it is the personal construct of self that helps define an individual (Fransella, 2003; Kelly, 1991; Kelly, 2003). An understanding of an individuals place in
26 the world can be gained by looking at the constr ucts that an individua l uses (Kelly, 1991). By looking at self-descriptors an indication of the percep tion of self can be obtained (Markus and Nurius, 1986). Without making a value judgment regarding these selfdescriptors, clues that help de fine the self of an individua l can be obtained (Morse, 2005). In this construct, questions relative to the self are: How do individuals describe themselves; Are there indicators that inform how an individual deals with life? By searching for answers to these questions and assessing each participants relative level of development using Eriksons stages of psychosocial development (Erikson, 1963), a definition and assessment of self can be constructed for each participant. Race, culture, and ethnicity can have an impact on the marginalization of individuals with physical impairments (B lock, Balcazar & Keys, 2002; Obiakor & Wilder, 2003). Individuals from a culturally di verse background have been exposed to the same marginalization that in dividuals with physical impairments presently undergo. In fact, comparisons have been drawn between the civil rights move ment of the 1960s and the disability movement of the 1980s. (For an overview, see Zolas review (1994) of three books [ A Review of The Disability Business: Rehabilitation in America by Gary L. Albrecht; No Pity--People With Disabilities Forging a New Civil Rights Movement, by Joseph P. Shapiro; and We Overcame: The Story of Civi l Rights For Disabled People by Richard Bryant Treanor]). Of the four individuals in this study, only individuals from African-American descent and European descent have been included. However, individuals and groups who are part of other culturally di verse populations may identify with perspectives and opinions expres sed by the individuals in this study.
27 Formative family life and present family structure can also have an impact on the perception that individuals w ith physical impairments have of themselves (Banks, 2003). The family unit will be discussed as the indivi dual with the physical impairment matures, matriculates through school, and establishes his or her own family. A perspective of what family life means to an individual with a physical impairment will be addressed from each individuals viewpoint. Assistive Technology Defined Assistive technology has been defined as the applications of science, engineering, and other discipli nes that result in processes, methods, or inventions that support people with disabilities (Bryant & Bryant, 2003, p. 2). Applie d to an individual with a physical impairment, assistive technology is designed to carry out an activity with or without another person, or to facilitate the individua ls involvement in regular activities (Council, 2001). The access to the activity may be the key use for assistive technology and may be oriented towards mobility for the individual who is nonambulatory (Bergen. Presperin & Tallman, 1990; Church & Glennen, 1992). Assistive technology may be designed for positioning to allow the individual with a physical impairment a comfortable, therapeutic positi on that facilitates access to the environment (Cook & Hussey, 2002). Or, the assistive t echnology for individuals with physical impairments may be adaptations to access a computer or other el ectrically powered devices (Bryant & Bryant, 2003; Esposito & Campbell, 1987). Finally, assistive technology may modify the environment for th e individual with a physical impairment,
28 such as electric door openers or voice actuated electronic devices (Angelo & Trefler, 1998; ScanSoft, 2003; Schmeisser & Seam one, 1979). Although augmentative and alternative communication devices (AAC) are an extensive part of assistive technology for individuals with physical impairments, communication devices a nd that segment of assistive technology will not fall within the realm of this st udy. Those interested in AAC are referred to Lloyd and Arvidsons Augm entative and Alternative Communication Perspective Series and the associated bibliographies (Lloyd, in press). Use of Assistive Technology for Indivi duals with Physical Impairments The scope of assistive technology be comes quite narrow when applied to individuals with physical impairments. A ssistive technology can be used for positioning to prevent expensive and painful skin breakdow n or to facilitate body alignment for erect posture that encourages midline head and body alignment for educati onal activities. This type of assistive technology incl udes sidelyers, adaptive chairs, adaptive strollers, cut-out tables and standing devices. Assistive techno logy can also be used for mobility for individuals with physical impairments that would include manual and power wheelchairs, strollers, and ambulatory aides such as canes walkers, crutches, helmets, and gait belts. Educational accessibility for individuals with physical impairments can be enhanced using assistive technology. Low-tech devices in this category include built up pencil grips, adaptive handles for utensils and slant boards for reading and writing. Higher-tech assistive technology devices in this category range from switches to interface
29 with computers to environmental control un its such as electric door openers, manual and electric lifts, and voice actu ated computer programs. In addition to the laws underlying an d directing assistiv e technology in school settings, Levine (2000) discusses reasonable accommodation for including students with physical impairments into re gular education. Weiss and Dykes (1995) relay the legal issues related to a ssistive technology ("Brown v Bo ard of Education Topeka," 1954; "Individuals with Disabilities Education Act Amendments of 1997 Pub. L No. 105-17. 64 Fed Reg. 12406," 1999; Medicaid, 2003 "Technol ogy-Related Assistance for Individuals with Disabilities Act of 1988," Congress 1990; Government, 2003). Research in the area of assistive technology falls into one of four categories: mobility, positioning, environmental control devices, and augmentative and alternative communication devices. Mobility for students with physical impairments is one of the more common areas to which authors have directed their attention. (See Bergen, Presperin & Tallman, 1990; Butler, 198; J ones, McEwen, & Hansen, 2003; Korpela, Sirtola & Koivikko, 1992; and Primaro & Colata rci, 2003 for a sampling of this area of assistive technology for students with physical impairments). A few authors have offered predictions of the future of assistive technology (see Hasselbring, 1997; Malcom, 1998; and Nick erson & Zodhiates, 1988). However, the majority of research written about students with physical impairments and assistive technology addresses the concept and practical implementation of inclusion into regular education for students with physical impairm ents. (See, for example, Bleck, 1979; Blenk & Fine, 1995; Bodine, 2002; Lahm, 2003; and Zabala, Blunt & Clark 2000).
30 As Todis (1996) has pointed out, there are many reasons why assistive technology may not be effectively used for a student w ith a physical impairment. The primary reason appears to be that the student was not incl uded in the equipment selection process. In addition, lack of training of the student, teache r, and family on the benefits and use of the equipment contributes to the la ck of utilization of assis tive technology by students with physical impairments. Although lack of funding can be an issue, the recommendation of expensive high technology when medium, or even low technology is preferable, contributes more to the poor utilization of assistive tec hnology. Assistive technology works best for individuals with physical im pairments when a team approach is used (Zabala, Blunt & Clark 2000). In the text and in the interviews, the terms disability, impairment and handicap are used interchangeably according to the respondents own vernacular. That is, each respondent will refer to himself or herself as a person who is handicapped, disabled, or impaired. How each respondent chooses to use th e term will be considered to be correct. Through the advent of the Disability Rights Movement and as a result of the transition away from the medical model of disa bility towards a social model of disability as reflected in the definition of an indi vidual with a physical impairment by the World Health Organization, progress has been made towards decreasing discrimination against individuals with physical impairments. Regard less of whether educa tion proves to be a medium of equality for indivi duals with physical impairments, caution must be exercised if the parallel continues between the disabi lity rights movement and the civil rights movement, lest valuable ground be lost to separate, but equal.
31 Chapter Three METHOD Why Life History Life histories have been used to study individuals with mental illness and mental retardation. Angrosino (1998, 2002) used life histories effectively in ethnographic research speaking for and with individuals with disabilities. By encouraging the individuals to speak on their own behalf, Angrosino created an environment that allowed the reader to identify with the participants of the study. In this study, life histories are used to allow individuals with physical impairments the opportunity to speak for themselves. Nuances of identity formation wi thin social attributi ons of age, gender, race/culture/ethnicity, and fa mily life can be explored, de veloped and shared from the first-person perspective of th e individual with the physical impairment. Issues of the effect of time of acquisition of the physical impairment and whether assistive technology plays a role in an individuals life can be more poignantly shared. Life histories make personal contact with the audience (Angrosino, 2002) since individuals can identify with a life story told from the person who lived it. Therefore, a wider audience can be reached and more lives can be impacted. In this chapter the role of a pilot stud y is described. Following that description, a discussion about sampling and participants in the study takes place. Next, methods of
32 triangulation are detailed. Immediately after that, an examination of the peer review process incorporated into the study is relayed. An audit trail for the entire study is then detailed. Next, referential evidence is described, followed by a discussion of transferability as verisimilitude. The final sect ion of the chapter describes the researchers veracity. Pilot Study As Guide Background A pilot study as described by Maykut and Morehouse (1994) was completed as a precursor to this study. The participant in th e pilot study, Mike, agreed to be interviewed and be part of the study for many reasons. Fi rst, and foremost, Mike had something he wanted to say about being disabled. He felt he had a story to tell and he wanted people to hear what he had to say. Because part of my agenda as a researcher was to relay the lived experiences of individuals with a physical impairments from their perspectives, our goals were mutually aligned. Life history was an appropriate method to accomplish our mutual goals. Mike also agreed to be a participant in the study because of our long standing friendship. We have known each other for over 25 years in our roles as he being a patient and my being his physical therapist, co-i nventor and supplier of durable medical equipment; but most importantly, as friends with very similar personalities and perspectives on life.
33 The benefits to Mike for participating in the study were a chance to tell his story (Ellis & Bochner, 2000), and to help dete r discrimination against individuals with physical impairments by contributing to the re search on the similari ties of individuals, rather than the differences. A possible risk for Mike was the emotional stress resulting from talking about sensitive issues. Since we were such close friends and have known each other on a medical level as physical th erapist and patient, on a business level as seller and buyer of services and products, and on a very pe rsonal level having discussed matters of intimacy and relationships about girl friends and wives, I felt the emotional risk was minimal and I felt that I could provide the emotional support as needed. Being that our friendship would continue long after the study was done, I felt even stronger that if Mike needed counseling beyond what I could prov ide, that I could secure and ensure that it was provided. We were, and are, close friends. That is relevant to the study because what Mike and the other three participants share with me is a more in-depth, more candid, more honest response and is closer to each pers ons core beliefs due to the nature of our relationship. There is a unique relationship of trust and interd ependency established between an individual and his or her physical therapist. There is an emotional bonding that transcends intellect becau se of the private and persona l touch between the (physical) therapist and patient. Becau se of this bond, a long-las ting deep, abiding, trusting friendship is possible between the physical therapist and the patient long after therapy stops. And when personalities and outside inte rests coincide between the therapist and the
34 patient, a meaningful, trusting friendship ensu es. Such was the case with Mike and with the remaining three participants in the study. In addition to being a therapist and a fr iend, I add a third perspective to the study. As a researcher, I offer a scientific perspective of what it is like to be an individual with a physical impairment. An outside researcher could offer differe nt biases and perspectives, but could not offer the depth of the expe rience due to the absence of the intimate friendship. In this study a friend, therapist, and researcher interacts, records, and responds to individuals with physical impairments in an organized, scientific, coherent manner. Pilot Study Protocol The following protocol was used in the pilot study: Initial phone contactI had s een Mike two days prior to my initial phone contact about the study, so the call came as no surprise to him. After exchanging pleasantries, I explained that I was doing a study on individuals with physical impairments and that I was interested in individuals speaking for themselves rather than someone speaking for them. I told him that in addition to the anticipated two or three extended intervie ws that would occur at a place and time that was convenient for him, that I would be including my perspectives of what he said as well as including what I kn ew and could find out about his lifes history. He was typically sa rcastically enthused about the prospect of talking about something that was important to him.
35 First interviewat the first interview, I shared the informed consent form and emphasized the areas of interest included on the formage, gender, race/culture/ethnicity, family life, time of onset of the disability, and assistive technology as they relate to forming the iden tity of an individual with a physical impairment. We reviewed the possible be nefits to him of telling his story and helping to deter discrimination against i ndividuals with physical impairments and the potential risk of emotional disclosure Mikes scoff at the potential risk reinforced my perception that emotional risk would not be a problem. To help organize the telling of Mi kes life history, a backdrop concerning some of lifes major milestones was offered. For example, I prompted with comments such as When I think about how I would go about telling someone about my life, I think of the major stages or events in my li fe, such as where I was born, where I first went to school, the best (and worst) thi ngs that happened to me in elementary school, when my siblings were born, wh ere I went to high school, what happened when I graduated, the major incidents in my life. For a start, where were you born...? Providing feedback and clarificationI showed support and encouragement as Mike started to talk about his life. My focus was on providing a safe context for Mike to talk. In the begi nning I specifically tried not to direct what he was saying. Beginning to direct the interviewone of my interests in the study is how a participant understands the self and how he makes meaning of his life as a person
36 with a disability. I began to explore this issue after Mike told me abut his girlfriend. I then thought it reasonable to be gin to encourage him to talk about his personal life and experiences. For example, You said that yo u didnt think that she broke up with you just because you we re in a wheelchair. What did you mean by that? Points of interestwhen th ere were lulls in the conversation, poi nts of interest that had not yet been covered were su ggested. For example. In thinking about your experiences in a wheelchair, are th ere experiences you have had that might be different to someone who is not a white male? These additional probes continued throughout the inte rview process until all items of interest had been covered. Sensitive issuesBecause of the quality and nature of our relationship and my having been Mikes physical therapist, I thought it more likely that Mike would be willing to discuss sensitive issues such as sexuality and hygiene (incontinence secondary to spasticity). My percep tions proved true. At no point in our interviews did Mike display any verb al or non-verbal reservations about discussing even the most intimate of topics. Gender issuesMikes gender bias wa s subtle throughout the life history interview process. All attempts will be made to appreciate gender perspective and bias throughout the study. History with participantsha ving a history with Mike, I entered the life history process with a mindset based on 20 years of friendship. Therefore, I had special
37 knowledge of his life. Since my questions came out of that knowledge, I had to remain aware that we were co-construc ting our story. Such would be the case with each participant. The culmination of the entire study was the joint product of all five of us. Second interviewPrimarily due to our l ong-standing friendship and familiarity with each other, we were able to pick up where we left off fairly quickly in the second interview. Having transcribed the pr evious interview, I simply read back the last transcribed page and Mike con tinued his story as if there had been no interruption. The second interview also lasted almost three hours. Third interviewthe duration of the third and final interview was also approximately three hours and was mutual ly concluded (Charmaz, 2000). That is, Mike felt that there was not hing additional he wished to contribute about his life history and, having transcribed and reviewed the interviews to date, I felt that no additional information would add to th e pool of knowledge about the items of interest including age, gender, race/cu lture/ethnicity, time of onset of impairment, family life, and assistive technology relating to individuals with physical impairments. At the conclusion of the interviews, my commitment was given to Mike that I would provide him with successive copies of the transcribed interviews as well as the final propos al and dissertation to allow him the opportunity to review the data for ve racity. I relayed, and he understood and accepted, that his review of the data was for accuracy, but did not include editorial authority. He affirmed that he was comfortable with those guidelines.
38 Evaluating the interviewThe interview process was critiqued by a colleague after audio tape recording and transc ribing the pilot study. Following a careful review and analysis, questions, prompts, and cues were adjusted to obtain a smoother flow of information from each remaining participant. Protocol for Main Study The protocol that was used in the pilot study was the same one used for the succeeding interviews. Based on my experiences using life history method and on the protocol used in the pilot study, the following procedures were implemented in the final study: Establishing relationshipseach particip ant is known to me as a friend, as a physical therapy patient, as a consumer of adaptive equipment that I supply, and as a co-researcher. It is the in-depth fri endship that I enjoy as a result of the therapist/patient relationship th at makes this study unique. Transitionsestablishing trust and rapport ar e crucial to transition to topics of interest to the researcher. Unless the partic ipant can be made to feel comfortable, guiding the conversation meets with resistance and ends in mutual frustration. My interpersonal skills and our established fr iendships have helped pave the way for smooth transitions. Sensitive issuesIf the participants app ear reluctant to share sensitive issues or concerns because they feel that might lower my opinion of them, I address the issue forthright, reassuring them that I va lue our friendship and trust and that my
39 opinion of them will not be negatively affected by anything they may choose to share. Likewise, I reframe from avoi ding sensitive questions or guiding the discussion away from sensitive issues or interpreting the results based on a preconceived perception of the participant. Because of our trust, sensitive issues are discussed and handled. Friendship encourages the open exchange of ideas a nd feelings that woul d not otherwise be possible. This study is dependent on the trust and friendship already established between the researcher and the participan ts. We were, in fact, all participants together in a mutual effort and product. However, because we are friends, I caution against assumptions being made by both the interviewer and the participan t. Because our friendship bespeaks a common knowledge, the potenti al to assume that the other knows what one is saying can lead to the si n of omission of potentially critical information. Similarly, I run the risk of including even ts solely from my perspective without receiving verification from the participan t due to an assumption on my part that the recall of the event is common knowledge. Because I am aware of these potential pitfalls of interviewing friends (Seidman, 1998), I monitor our discussions in progress, and after th e fact, during transc ription. I make adjustments accordingly, thereby keeping this potential problem to a minimum. Interviewsmore than thr ee interviews were require d. Approximately three hours per interview were indicat ed. Each interview session was contingent upon the dynamics of each individual.
40 Recording interviewseach interview was tape recorded and transcribed by the researcher. Dragon Dictates, a voice-to-pri nt software program, was used for the first interview with Mike and was f ound to be technically pleasing to the researcher, but more time-consuming and la borious than productive. Its use was discontinued. Likewise, Atlas ti, a qualitative data anal ysis software program was used for data collection and storage, but due to its complexity and design as a grounded theory analytic program, was discontinued (Strauss & Corbin, 1990; Weitzmann, 2000). Self-Descriptors In order to obtain self-descriptors of th e participants, a self data survey (Morse, 1978) was administered. Results of the survey for each participant are included as well as a response by the researcher. The self data survey instrument and each participants response to the survey are included in Appendix A. Analysis The interpretive framework for each life history was chronologically oriented and followed the life span of the individual. Each participants life history is shared in separate chapters with a sub-chapter followi ng that provides the re searchers reactions and responses to the life history. A summative chapter of overall re sponses and reactions of the researcher follows the final participants chapter.
41 Critical markers that relay significant or important self-defining issues in each individuals life were shared as they arose. Areas of interest such as age, gender, race/culture/ethnicity, family life, time of onset of disa bility and assistive technology serve as points of discussion within the ove rall framework of the narrative. Each life history interview was informed by verbatim ma terial from the participants to achieve authenticity and to provide low inference descriptors (Ary, Jac obs, & Razavieh, 2002; Johnson & Christensen, 2000). Issues for analysis included: Conflating the roles of re searcher, therapist and fr iend and relaying how that affected the interaction between th e researcher and the participants. My feelings of relating to each partic ipant and the effect that had on us individually and mutually. Knowing the participants beforehand pr ovided insights into areas that perhaps would not have been considered by anot her outside researcher. This also may have led to information that was assumed and readily apparent to the researcher and the participants, but would not be common knowledge to an outside researcher. The ethical issue of abandonment does not a ppear to be germane to this research. I was each participants friend before th e research began and will remain so following the culmination of this study.
42 Sampling By selecting a diverse range of gender, ag e, race/culture, fami ly and congenital or acquired physical disabilities, this purposeful sampling provid ed a variety of individual perspectives (Guba & Lincoln, 1981). Opini ons by each respondent provided one perspective of what it was like to be that person. Incorporat ing five perspectivesmine, plus the four participants interviewed in this study, increased the potential for transferability of the results. Participants There are a total of four pa rticipants in the study. Mi ke is a 32-year-old single male of European descent with cerebral pals y. Mike has no children and lives alone in an apartment. Theresa is a 36-year-old single female widow of African American descent with a 15 year-old daughter a nd a 12 year-old son. Theresa and her children live in a house and she commutes back and forth to work and college in her power wheelchair. Theresa was paralyzed as a result of an auto accident 12 years ago. Ellen and Bill have been married to each other for 39 years. They are both of European descent; Ellen is 62 and Bill is 63. Ellen was paralyzed from the waist down due to a fall when she was a teenager, and Bill was born with cerebral pals y. They met in a special residential school for people with disabilities when they were young.
43 Triangulation In addition to the recorded life histor ies of the four part icipants, I provide reactions and responses to each of the lif e histories, thereby including self as a participant. Maintaining a journal of refl exive field notes throughout the intensive, extended interviewing process assisted in de fining my responses. Participant observation as an active participant in the disability m ovement over the last 25 years, as well as the ethnographic experience of interacting with each of the respondents throughout the last ten years is included as part of the life history process. Peer Review Peer review as a method of consensus is incorporated into the study (Denzin & Lincoln, 2000; Eisner, 1998). Based on the pilot study, data were organized through the technique of coding and re-coding (Dey, 1999; Strauss & Corbin, 1998) and provided a form of pattern matching. In the pilot study, e ach line was coded to reflect the contents. Obvious codes denoting gender, race, congenita l and acquired were us ed as well as less obvious codes of personality, environment and circumstances. Codes were initially as elaborate as needed to describe each line of data, such as psychological factors of individuals with physical impairments and sibling effect on household operation. Each category was then evaluated for its pertinen ce to the study and was either incorporated into the study or was collapsed into a larg er family of similar concepts, e.g., sibling effect on household operation eventually became part of family life.
44 After the pilot life history was coded, the list of codes and the uncoded data were shared with a colleague who wa s trained in qualitative data analysis. The colleague is a doctoral candidate in special e ducation with extensive course work in qualitative inquiry. She is also the parent of a child with a di sability and has eight years experience teaching students with impairments. She independen tly coded the data using the code list provided. Similarity between code assessments was conducted and was found to match fairly consistently. Audit trail The colleague also conduc ted an audit trai l three times in the studyinitially following the pilot study, midw ay through data collection, an d at the completion of the study. The audit trail consisted of reviewing th e logistics of the interview environment, reviewing the characteris tics of each respondent, revi ewing the interview and transcription process, verifying the code/recode procedures, comparing the narrative to the transcribed interviews and field notes and finally reading th e narrative and the researchers response for accuracy compared to recorded data. Referential Evidence Referential evidence as described by Johnson and Christensen (2000) is included using participant feedback as member checks. In addition to comple te audio recordings and transcriptions from each responde nt, each participant was given periodic
45 opportunities to review their interviews for authenticity. Reviews continued throughout, including the final draft. Transferability as Verisimilitude Each participants story and narrative ma y have different meaning for each reader of this study. What one takes from this st udy will depend, in large part, on what one brings to the study. That is how meaning is created from this studyyou, the reader, the four participants, and I co-construct the mean ing. Together, we create a truth that has meaning for each of us. Transferability in lif e history research relies primarily on the principle of verisimilitude. Researcher Veracity Journal entries were kept to assist in reflexivity for the researcher. A sample journal entry from the pilot study: March 12th1:00 p.m. Initial interview with Mike. Description of living envir onment3 story subsidized apartment complex. Individuals must have physical impairment to live there, but must be independent of all ADLs (Activities of Daily Living). They must be able to exit building independently in case of emergency. (Are there limitations on level of cognitive ability for residents?)
46 (How does Mike feel about th e requirements for living here and what are his opinions of his neighbors?) The reflexive component becomes most poignan tly applicable in the analytic section of this study when self as informant reacts to and responds to the interviews. Having known each of the respondents for at least ten years in varying capacities as a physical therapist, medical equipmen t provider, colleague on advocacy boards and councils, and as a friend, I approached each of them with certain pr e-conceived ideas of who they were and what each represented to me. Based on the pilot study, I found that at each stage of interaction with the data, I learned more about the individual. From the initial recorded interv iew, through transcription to proof reading the tran scription, during coding and re-coding the data, wh ile creating the first narrative from the field and in the proofreading stage, I developed a closer unders tanding of what it may be like to be an individual with a physical impairment. My pr econceptions told me that there was no real difference between being an individual with a congenital physical impairment and being an individual with an acquired physical impair ment. Mike, as the init ial respondent in the pilot study, proved me wrong by relaying vocati onal opportunities and financial benefits that individuals with acquire d physical impairments receive that are not available to individuals with congen ital physical impairments. By incl uding self as respondent as part of the analysis of the life hist ories, I added another interpreta tion of what it may be like to be an individual with a physical impairment. The reporting of the data in each partic ipants life history differed. After reading, reviewing, analyzing, and assimilating each life history, I developed an intuition how best
47 to present each persons story to access the strengths of each life history. Underlying that intuition was an intent that I not speak for individuals with physical impairments; rather, that each person speak for herself or hims elf as much as possible. As interviews progressed, I was more able to finesse the discussions towards my areas of interest without disrupting the personal flow by the participant. Would others studying the same topic and using the same methods reach the same conclusions? By incorporating various methods of triangulation, incl uding an audit trail, incorporating peer review, utilizing reflexivity in journal entries and field notes, a truth about this subject can be shared allowing others to identify with that truth.
48 Chapter 4 MIKE: WHAT IT IS LIKE TO BE DIFFERENT Mike is about 38 years old. He has neve r been married, but would like to be. He has loved and lost, much to his chagri n, due to his disability. Just like King Gimp an individual with severe spastic quadriplegic cerebral palsy portrayed in a documentary on television, Mike was forsaken by a friend, a girl because of his disability. Mike identifies with King Gimps feelings of liminality as de scribed by Murphy, (1988)individuals with physical impairments are forced to the periphery of society; they are forced to assume a non-entity status Mike also shares the Kings sense of humorlooking at life from inside a body that does not do what he wants it to. Mike named his consulting company P. M. I. G.which is gimp backwards. Mike is the second born son of a typical Florida family. A sister and another brother followed his somewhat traumatic birth. In August 1965, Mike came screaming into this world, never to be silenced agai n. While his legs did not work within normal physical parameters due to congenital spasti c diplegic cerebral palsy, there is nothing wrong with his entire language mechanism, and he continues to use it to his advantage every day. We first met when I came to his school di strict as a physical therapist. Mike was mainstreamed as an exceptional student in a special class in a regular junior high school.
49 I was a relatively young (33 year old), idealis tic windmill-chasing, out-to-save-the-world, pediatric physical therapist. What Mike and I immediately had in common was a dry, sardonic, somewhat jaded, somewhat cynical, sense of humor. We were both champions of the same causefighting for the underdogbut we knew that we would never win; hence the cynicism. The sense of humor kept us going. Mike was using a manual wheelchair when I first met him. He had l ong leg braces made of metal and plastic. We worked on locking the leg braces so he coul d get up from the wheelchair and walk for 20 feet or so using a reverse rolling walker. Wh at we mainly did in those early sessions was solve all the world problems according to Mike and me. Our friendship continued over the year s as Mike progresse d through high school and then to Bowler University as the first student with a significant physical disability ever to attend that university. We resumed our friendship when Mike had to return home from college after thr ee years due to a combination of medical conditions, none of which was related to having cerebral palsy. Due to a combination of the annual influenza strain going around that year, a paras ite in the water, and stre ss, Mike developed bleeding stomach ulcers. The condition was severe enough to require Mike to drop out of college and return home to recuperate. The recupe rative process took ove r a year and a half. Our paths crossed again when his wheel chair, (now power), needed repairs and I was in the business of making and repairing wh eelchairs. He was older, but he was still Mike. I was older, but did not have the know everything attitude that I had before. I attributed my change to expe rience; Mike just attributed it to age. According to Mike, you always know more as you get older, rega rdless of your disability. This increased
50 awareness only continues up to a point, accordin g to Mike, after that, the synapses start falling off. For the first eight years of his lif e, Mike lived in Hollywood, Florida where he attended a completely handicapped school: School there was a lot better than here even though they were both completely handicapped schools. Because here, they just put you in that school because they didnt know what to do with you. In Hollywood, its like they had a plan and direction. I was with that brain-drain, Ms. Houston, until they took a whole bunch of us that werent ment ally deficient or brain suckers in one form or another, and stuck us over at B ecker (a regular elementary school). Ms. Houston, in her infinite wisdom, said, Oh, let's put them all in the third grade. Well, you know me, thats just like two y ears of my life just wasted. Pissed me off! On top of that, I hated Becker, b ecause I hated Ms. Houston. She was one of them coddle em, baby em, and all that ki nd of crap. So I put up with that until I went to junior high school. And we got Ms. Hedges! I got a lot of breathing room. God was that fun! That was better. Much better. Looking back, Mike thinks it may have been an age awareness thing. When he was younger, he really didnt see himself as different from other kids. All he knew was that it was raining and he couldnt go outside and play. As far as he was concerned, the extent of it went as far as I just busted another wheel on the wheelchair, now I gotta go get another chair from Salvation Army before I can go play in the mud again. As Mike
51 got older, he was made to feel the differen ces that having a physical impairment brought. Mike relays: At Streamside Junior High School pe ople were starting to figure it out. Okaythere are handicapped people here and they could deal with it. And Id have the occasional person say to whoeve r was pushing my wheelchair, Whats his name? And Id look right at them and say, Oh God, I dont know. You wanna know my name? Ask me, for Gods sake! In high school, we had less and less of that. And by the time I got to college, it was just fun because all my friends, no matter who they were or wher e they came from, just, Oops, its Mike. Not, oh, theres the guy in the wheel chair, none of that crap. Its just Mike. And Mike happens to be in the wh eelchair; if you cant deal with it then, too bad, because thats the way it is. Mike has a solution to the problem. It all boils down to integration. When he wins his copyright lawsuit, Mike plans on building a large apartment comp lex that is totally integrated with individuals from regular walks of life, individuals who are in wheelchairs, individuals from varying soci oeconomic backgrounds, and individuals from varying cultures. It will be a totally integrated living environment. Mike presently lives in a HUD Secti on 8 subsidized apartment complex for individuals who are disabled and who are recei ving Supplemental Social Security (SSI). Living in the dorms during college eliminat ed a lot of the discrimination. Everybody saw him and was around him every day and it was no big deal. Now he feels segregated and discriminated against.
52 Mike relays a story that poigna ntly demonstrates his point: So we were over at the airport pick ing him up and I'm in the elevator. And theres a very pleasant lady there with a little girl, 5 1/2 years old. And she looked up at her and said, Mommy, why is that guy in a wheelchair? And her mother gave one of the best answers I've ever heard in my life. You know, most people are like, oooh, don't stare, don't say anything, and all that stuff. Well that's a stupid thing to tell a child. Don't ever deny me a child's curiosity. You know, just don't. Umm, well, you remember that talk we had one time about Gods special people, theyre just a little bit different sometimes? And she said, yes. And she said, hes one of those special people. And I thought, well there's a good way to explain it to a kid. Cause it's something that makes sense when you are that young and they'll figure out the rest as they grow. And I thought; now if all the parents would do that, life would be a hell of a lot easier. And I still see it. After recuperating from bleeding stomach ulcers for a year and a half, Mike moved into his present two bedr oom subsidized apartment. Af ter three months, he asked Sam Pebble, a friend from high school who was also in a wheelchair, to move in with him because everyone else in the building gave him gas, except for Lana. I suggested that Lana was an exception because she ha d no expressive language. Mike was totally non-responsive to my observation.
53 Mike then proceeded to get a real esta te license because Vocational Rehabilitation (Voc/Rehab, V/R) told him that the only job he was suitable for, and for which they would help train him and help him secure em ployment, was at a hospital. According to Mike, Voc/Rehabs rationale was that he wouldnt be as noticeable in a hospital; everybody there is used to seeing people in wheelchairs. This was reason enough for Mike to do anything else. So Mike went to the local community co llege to pick up cred its that he needed towards his major of business administrati on. His best experience at the community college occurred in his favorite professors class: I loved the guy, he was a hoot. Thought I was brilliant. Half the time I was brilliant, half the time I wasn't. We got along fine. And I think I took him for two or three classes, we got along fine. One was business law, one was economic something, I don't remember what the other one was. But, yeah, I loved the guy; he was fun. I remember I was sitting there one day in class and he walks up to me and says, you know something? One of th e girls chewed me out Tuesday after class. I said, for what? She said for me telling you to get your damn wheelchair out of my way. I said, are you kidding me? He said no, she was offended by that. I said, well don't that be at all? I didn't care. "Get that damn chair out of my way. Yes, sir. You know he was a colonel in the Army. I loved it. That's the way it is. I loved it. It was apparent to me that Mike just wa nted to be treated like everyone else. I saw that attitude reflected at his home at an ear ly age. His parents treated him no differently
54 than any of their other th ree children who happened not to be handicapped. Mike was just beside himself with joy the first time he came home from college to find a ramp: I didnt get a ramp until I damn we ll moved out of the house. I came home from college, and look at this shit, look at this I gotta ramp, I can get in and out of the freakin frickin front door. Look at this; I can even ge t the key in there when I get up to the door. I damn sure shoulda had this when I was a kid. After taking all the classes that he could tolerate at the community college, Mike enrolled in an accelerated business administra tion program at the university extension in town. Hed catch a ride with a friend or re lative to the bus stop, and then take the wheelchair lift-bus to classes. Mike had tr ied driving and found it to be an exhilarating experience, but just too difficult to manage so many variables: I did drive, but I found it to be, although highly, highly enjoyable, and a great deal of freedom, I found it to be a very complex set of variables to coordinate at one time. Because, having spastic cerebral palsy, if you move this, something else is going to move, no ma tter what. So I always had two things moving at once when I only wanted one. So I found it a very complex set of variables to coordinate, but fun as hell. Yeah, if I ever get around to doing it again, I'll try to learn it again. It's a lot of freedom. Mike had been working as a real estate agent for over a year by the time he earned his bachelors degree in business administra tion. Mike knew he had selected the right person to work for when he went for his interview:
55 I go all the way out there, and I go in there for the interview, and he's looking at me and stuff. Took a lot of guts to come in here in a wheelchair for a job like this. And I said, yeah, well, I guess so. Were talking, back and forth, and he says, where do you live? And this was before I moved in here, so I said well, that way [pointing toward the eas t], way out there, that way, way out by Miquilla State Park. Oh I don't know, 40-50 miles that way. And he goes, Huh? You mean to tell me that you came all the way over here, up my back steps (Mike was in a manual wheelchair and there was no ramp) and in here for a job? And I said, yeah, do I have the right place? And he said, yes! Youre hired. John has since sold the real estate agency, but Mike continues to work for him on a part-time commission rate as needed. Wh at Mike really wanted to do was play Monopoly with real houses. According to Mike his expertise and area of interest in college was leveraged-buy-outs (LBOs). He wa nted to test theory to practice and set up a real estate deal buying a building and la nd on Fiesta Key worth 1.5 million dollars. Although his financial plan was solid and was endorsed by his college professor and admired by a bank president, he was unable to secure the total capital necessary to do the deal. He got $800,000 committed, but because he was in a wheelchair, he couldnt get the remaining $400,000 needed. Even though one bank vice president had described his preparation and presentation as not ha ving seen anything this clean and beautiful since the eighties, a textbook case; he would still not loan him the money. Mike thinks they didnt want the little guy in the wheelchair makin all that money. And they didnt
56 want to loan the little guy in the wheelchair all that money. I act ually had four private guys tell me they were not going to loan it to me because I was in a wheelchair. After the deal fell throu gh and Mike lost the escrow money, he ventured into private consulting. Having a background in fi nance and in computer programming, he secured a sub-contract from a major accounting firm to write a program that would allow differing accounting software programs to talk to each other. Mike included a covenant in the contract with the accounting firm that guaranteed Mike copyright of the program he wrote if he was not paid for his work. If payment was received, the copyright would revert to the accounting firm. Mike wrote the program; it worked, and he was not paid. Mike has been suing the accounting firm fo r at least two years and hopes that its resolved before he dies of old age. Copyright suits are some of the trickiest, but I think Ill prevail. It's just a matter of before I'm 40, or before I'm 60. Hopefully it's before I'm 40, because its holding me up. Well, I can't go back and get my master's degree before I settle. Mikes plans include a Masters in Business Administration (MBA) and even a Doctor of Jurisprudence (JD) if he can ever finish the lawsuit. But he cant leave now; hed be a nervous wreck; I cant trust somebody here to handle it all if Im not here. Mikes perception of other factors that may impact what an individual with physical impairments can and cant do, such as gender, race or ethnicity was the same. I dont know what impact gender or race has on an individual with a physical impairment; Ive never looked. Not so with the apparent inequity between an individual with an acquired physical impairment and a person w ith a congenital physical impairment. Mike
57 has discussed this issue at length with his friends Sam and Nate. Both Mike and Sam were born with a disability. Mike has cerebra l palsy and Sam has spina bifida. Nate was paralyzed when he was 27 as a result of an auto accident. All three use manual wheelchairs for mobility. Mike also has a power wheelchair that he uses when the distances are too far to propel. The commonalities in persp ective of all three had to do with anger at their disability. According to Mike: I actually had somebody ask me that once, he said, are you angry about this? And I said, angry about what? Clin ton bein in office? What? And he said, no, about being in a wheelchair. I said, why? It's natural. How can you be angry about something that's natural? I have my bad days, just like everybody else. Well, no matter what you do, your legs aren't going to work right, and some muscle is not going to do what you want, and you just have a bad day. But other than that, there's no reason to be mad about being in a wheelchair. And he thought I was nuts because I wasn't mad. Mike and Sam asked Nate his perspec tive of having acquired a disability: Cause we talked about it a lot, cause we were curious. How do you look at it, Nate? It's nothing for us because it's just normal. But we were curious; how do you look at it? And he said, basically, that he looked at it th e way that we looked at it with the exception of there were da ys that he was angry cause he couldn't do what he was doing before. It doesn't mean that he was angry about being disabled,
58 he was just angry because he couldn't do what he was able to do before. And that was a little bit different way of looking at it. According to Mike, the difference be tween individuals with acquired disabilities and individuals with congenital disab ilities is the way people treat them: One, people feel sorry for people in an accident in a different way than they feel sorry for guys like me. I, as the victim (of a handicapping condition), become the accused; I am somehow res ponsible for my handicapping condition. But hes not; hes a victim of circumstances And hes taught things that we didnt know. The first thing they taught him in a rehab hospital was how to deal with his limitationshow to manage, how to handl e the wheelchair, up-and-down. They never taught us that shit, ever. You want to know how I ended up learnin that stuff? Trial and error; smashin my head on the sidewalk. To this day, Ive never had a lesson. Whats one of the first things they teach them? This is a wheelchair; this is how to use it. They never taught us that stuff. Ever. An d its easier for him to get financial aid than it is for guys like us. Because they will spend as much money as needed, even supplanting his income, to rehabilitate him to get him back in the work force. At the same time, they wont spend 1/20th of that amount to habilitate us to get us in to the work force, unless its for a job that theyve predetermined thats all we can do because were gimps. Mike doesnt see much difference in the perception or th e use of assistive technology between individuals with congeni tal physical impairments and those with acquired disabilities:
59 Its all according to what you need and if youre smart enough to use it. Its not so much a matter of who uses it more, or who knows more about it; its a matter of who can afford it. So from th at standpoint, I guess guys with acquired handicaps use it more because they have better access to funding. [According to Mike], so ciety is divided into the haves and the havenots If an individual with a physical impairment is not part of the have-nots when starting out, that person ce rtainly will be by the time the system finishes with them. See, I understand there s a disparity between the haves and the have nots The haves do not want the have-nots to have. Then they would be haves and the haves do not want the have-nots to have it; they want the haves to have more and the have-nots to have nothing. Even though Mike comes from a cohesive middle-income family, and is a college graduate with advanced skills in finance, co mputer technology and real estate, he falls into the lower socioeconomic status, according to his tax returns. One reason for that may be that Mike created a 99-year irrevocable trust for all hi s personal assets and business interests. Mike continues to place all income and assets in the trust to maintain minimal tax exposure because the trust isnt required to file a tax return (Mike secured a ruling from the IRS and keeps the chapter and verse listing of the IRS regul ation at the ready); Mikes reportable income is well below the poverty level. I asked Mike, and now, looking back, if you had a way to do it over again, what would you change? Mike replied:
60 Wouldn't have changed a thing when I was a kid, I had a hell of a good time. I did. I had a good time when I was a kid. I had a lot of fun. I had a lot of fun in college too. I wanna go back a nd do that all over again. The practical jokesoh God, were they fun! I probably wouldn't have tried to buy that one piece of property; I would have saved my money and done it different. Going back farther than that, I pr obably would have figured out some way to avoid the whole event in Miami when I was there for that weekend, I'm sure, (Mike is referring to breaking up with his girlfriend). I'm not quite sure what I would have done, but I would have thought of something. I'm not sure what it is, but I would have figured it out if my life really depe nded on it. I probably would have backed out of Bowling University ear lier than I did, and skirted it a different way so I could have made it a ll the way through to graduation. But now Mike has visions for the future. I don't know exactly cause you just go with the flow as it comes along. Ive got a lot in my head. Pete: yeah, married, two kids Mike: unless it kills me first, yeah (laughter). Pete: graduate school in Lorland? Mike: probably Dadeland. But don't quote me on that; that could change. They have a program there, and I want it. If I fi nd it somewhere else, and the opportunity is there, I'll go somewhere else. Pete: do you see teaching in your future after you finish school?
61 Mike: I don't know. And that's a good question cause it's come up a couple of times cause I used to teach. And most of my friends are teachers. You know, that's just what a whole bunch of us e nded up doing when we got out of college. So it's possible. But if I taught, I'd on ly teach college and up. Because anything below that is not worth it. Too much at titude. Too much discipline. Too much trouble. College and up, that's for sure And if it was, it would probably be something like finance, business law; you know that stuff that's just right up my alley, that's all in my head, anyway. Mikes vision for the future includes advocacy: I wanna do something specifically. Th e worst thing in this county is two things. Handicapped facilities, in genera l, period, across the board; they suck. Two, handicapped assistance, no matter what they say, anywhere, stinks. If any kind of handicapped individual, anybody, that's anybody that wants any kind of assistance in the United States, they're up the wazoo. And the reason is, theres no money in it. When there's no money in it, you're not going to get any help; it doesn't make any difference if your heads falling off, if there's no money in it, they're not going to stop and pick it up for you. The best place for a handicapped pe rson to be is in Canada. Well, I don't want to go to Canada; Canada sucks. So, you have to get somebody's attention here. So there has to be a way to do it in a way that's not really abrasive, but I've got to get somebody's attention. And the way that I figured that I can do that, is to
62 get enough money behind me so I can go out there and do whatever needs to be done in the world so they will notice. Even though things have gotten better for handicapped people; who gets stuck holding the bag?The people in wheelchairs again. Mike wants to change that. Self-Description Mike describes himself as a cynic with a warped sense of humor This perspective is reflected early on in our discussions as we solved all the world problems, according to Mike and me. Mikes assessment of being sm art is probably accurate if his irrevocable trust is reviewed and his comparative succe ss in college is taken into consideration. Mikes self-assessment of being loyal is re flected in his long-t erm friendship with Sam. Sam also has a physical impairment, and he and Mike went to sc hool together since the sixth grade. Mike encouraged Sam to move into his apartment with him, and, although they are no longer roommates, Mike continually takes res ponsibility for Sams social life. The friendship has lasted over 24 years. When asked how the person who knows hi m best would describe him, Mike deflected the question by responding that sh e would probably use the same descriptors that he had used to describe himself. However, he did say th at his girlfriend in college, whom he described as the person who knew hi m best, used to say that she wished I could see myself the way that she does. Mikes responses to who he is most lik e is probably the best reflection of how Mike sees himself. He is like his mom because he has what you can call, kid stuff. I
63 like super heroes, magic, and fun. Mike is like his dad in that he has the ability to stand his ground and his temper. He is like his pate rnal grandfather because he has control of his temper; has a healthy dose of street smarts (common sense); and has a sense of humor. Mike is like his paternal grandmothe r because he has a sense of order (anal), sternness, and a lot of backbone. And he is like his maternal grandmother because he has moxy, an eclectic natu re, and is intelligent. Reflections and Response to Mike Mike, as an individual with a congen ital physical impairment cites three ways that individuals with acquire d physical impairments are diffe rent from individuals with congenital physical impairments. For Mike, as an individual with a congenital physical impairment, there is no anger associated w ith his disability. For him, being in a wheelchair is as natural as not being in a wheelchair is for an individual who is not physically impaired. However, Nate, an indivi dual with an acquire d physical impairment is occasionally angry at the things that he cannot dothe things that he was able to do before the accident. People feel sorry for people in an accident in a different way than they feel sorry for guys like me. In this statement, Mike reveals how society reacts and treats individuals who are physically impa ired. He acknowledges that there is a differentiation between individuals with congenital physical impairments and individuals with acquired physical impairments. According to Mike individuals with acquired physical
64 impairments have a distinct advantage ove r individuals with congenital physical impairments. This preferential treatment for indivi duals with acquired physical impairments extends to financial assistance. Individua ls with acquired physical impairments are substantively assisted to re -join the work force. Indivi duals with conge nital physical impairments are never given that opportunity at the same level as individuals with acquired physical impairments. The inequity is obvious to Mike. As an individual with a physical impa irment, Mike does not know if age or gender plays a part in how individuals with physical impairments perceive or define themselves. He has never really looked at it that way; nor has he discussed it with anyone else. It appears that socioeconomics play s a part in defining an individual with a physical impairment. According to Mike, he came from a middle-income typical Florida family. And yet, as an adult, Mike is classified in the lower socioeconomic area. Although Mike may have chosen that status by creating a 99-year irrevocable trust, he may well be representati ve of individuals with physical impairments, regardless of how that status is attained. Mike says that he picked a good family to be born into. As a result, he had a great time as a kid. Not all children with physical impairme nts may be that fortunate. When I was a program specialist for students with physical impairments for the local school district in 1994, I took an informal su rvey of the 123 students identified with physical impairments in the school district. Eighty-three percent of these students came
65 from single parent families, and 56% of these families were identified as having incomes below the national poverty level (at that time poverty was c onsidered to be an annual income of $14,400 or less for a family of four). Mike did not have an op inion about culture and ethnicity as it relates to individuals with physical impairments. That is entirely understandabl e. As a member of the non-marginalized majority, I am acutely aware of the fi ne line that I cannot cross by societys standards. Whats it like to be black ? I dont know; whats it like to be white? Take out the words black and white and insert disabled and temporarily ablebodied (a term Mike, and others in the commun ity of disabled individuals, use to refer to individuals who are not in wheelchairs yet), and a comparison and conclusion can be made explaining why Mike does not have a perspective on culture and being disabled. A good part of how Mike defines himself is tied into his disability. Well, no matter what you do, your legs arent going to work right, and some musc le is not going to do what you want, and you just have a bad day. Combine Mikes perception of how soci ety feels sorry for individuals with physical impairments and a picture begins to emerge that indivi duals with physical impairments define themselves in terms of th eir disability and how society perceives that disability. According to Mike, the use of assistiv e technology by individua ls with physical impairments is more directly related to funding than to need, or to knowledge that particular technology exists, or to the intellect or ab ility of the individual to use assistive
66 technology. Mike describes the use of a ssistive technology as relating more to economicsthe haves and the have-nots than to viable decisi ons by individuals with physical impairments.
67 Chapter 5 THERESA: HALO WITH A TILT Background Theresa projects the distinct impressi on that she would be equally competent whether she is standing erect on legs that function or de pendent on a power wheelchair for mobility. Theresa is a 32 years old, black fe male (her preference of designation), with two teenage children and is essentially paraly zed from the neck down. She is not married and has never had any difficulty disciplining her children since the car accident 12 years ago. Her children were three and one at the time of the accident. Theresa is working towards a Masters in Social Work (MSW) degree while working full time. When Theresa first went to college: I wanted to work with girls who were teenage parents. And then once I got hurt it was, I should do this [work with pa tients with spinal cord injuries]. So I think for myself, the different things that Ive experienced in life, and all the trials and tribulations that Ive been through. Personally, I think I can lend a different ear, or position for somebody else, because I have been through so much. I just think I would be helpful, valuable. She owns her own home in a quain t neighborhood and drives her power wheelchair five miles back and forth to wo rk every day. Rather than improving her
68 income by collecting disability, she prefers the independence and status that working brings: For one, my whole purpose of going back to work is to let my kids see. I had two small children and I di dnt want their life to be affected by my disability. Having a parent with a disabili ty doesn't mean that their lives have to be different. So I looked at itIf Im here on disabili ty, my kids are never going to have a normal life. Would they ever have a yard of their own? I don't think I ever would have moved out from my grandmother's. Anywhere you move you have to have a job. You just can't be getting a check every month. That was the first thing. The second thing was always living in somebody else's household. You have to live by their rules. How could I raise my children the way that I wanted to raise them living underneath somebody else's house? Then what type of example would I be to my daughter? As a woman, and that type thing. OK, then my sonsame thing. And then living with my grandmother, while I think she did a great job, I didn't agree with every tactic she used with raising kids. So I wanted to have the independence to raise my kids the way that I wanted to raise them, for them to have the values that I wanted to instill in them. So I had to make certain steps for myself to make sure after I took the step s that I could raise my kids the way I wanted to. Working was the first step of that. Theresa describes her childhood as different:
69 I was born here in Brighton at Ma ngo Memorial Hospital. I am a native Floridian. February 29, 1972. Im a leap year baby. Every four years, so now I'm only actually seven. I was raised by my grandmother. When my parents were divorced, they couldn't agree on who was going to have custody of me the only thing that they could agr ee on was that my father didn't like the man that my mother was dating. They did agree that my grandmother would get custody of me. Theresa was 15 when her daughter was born yet she still r eceived a college athletic scholarship to play basketball. She describes what it was like playing high school sports and having a daughter: Yes, I went back to playing bask etball after I had her. When I was at basketball camps and games and like that, e ither my grandmother kept her or my aunt would keep her. And like during ba sketball games, we would go pick her up from day care, get her bag ready, and go take her to the game. She would go to almost all my games whether they were aw ay or at home. She would usually ride with one of the parents. It was diffe rent, you know, to play basketball in high school and look up into the stands and s ee your daughter. To be a senior in high school and look up into the stands an d see your daughter watching you play basketball. She could care less what you' re doing at that time; she's looking at everything else. It was strange, looking up there, like most people would look up and say there's my brother or my sister watching me; and I would look up and say, there's my daughter. It was school in a way, but it was different. It was a different childhood, it was a different bri nging up, it was just different.
70 Her son was born after her first year in college and the car accident was soon after that: We were driving from Aldonia, me my mom, my son, his dad and my moms boyfriend. And there was an 18 wheeler on the wrong side of the road, and I swerved to keep from hitting it head on and I couldnt get back control of the car and the brakes locked up, instead of just letting the car coast ( now that I know), I hit the brakes and the brakes locked and made the car flip. My mother was killed in the car accident, and I was hurt and th at was it. My son and everybody else was okay. Im a quadriplegic C-4-5-6 Pete: incomplete? Theresa: actually, its seve red, but Im a weird case. Pete: yeah, because you shouldnt be able to extend your wrist. Theresa: and I have complete feeling. Pete: you do have complete feeling? Y ou told me that before; I dont know why I forgot Theresa: I have total feeling. In my lowe r extremities, I cant te ll hot and cold. If you were to pinch me, it wouldnt hurt, but I could tell that you were pinching me. Like, I pulled my toenail off my toe the ot her day. I knew that should have hurt. My toe was spasming and I knew that it shou ld have hurt, but it didnt hurt me. I can tell what happened and where it happene d, but so far as pain, I dont really experience that.
71 Pete: how old were you when the accident happened? Theresa: I was 20. Peers with Disabilities Up to that point, Theresa had very littl e exposure to individual s with disabilities. She remembers a teammates brother who was handicapped and another student in school who was in a power wheelchair, who they called Speedy: One of the girls on the basket ball team, her brother, John, was a quadriplegic. He was doing flips on a mattr ess and he landed on his neck. He was in my classes when I was a senior. He came to all our basketball games. He was there in his wheelchair all the time dur ing the summer when we went to her house; he was bothering us all the time. When I was in high school there was another boy in a wheelchair, he wa s white. I think he had muscular dystrophy we used to call him Speedy because he had a motorized wheelchair. He would go so fast [hmmm that sounds familiar] [Theresa likes speed in her wheelchair]. I think Im the first black person I've ever saw in a wheelchair. Age and Disability Theresa feels that age of onset of th e disability for the individual makes a difference: If you are a teenager and get a di sability, you're going to be pushed differently, you'll be motivated different ly. If you're in your mid-twenties or
72 thirties, the motivation will be different. I remember when I was in the hospital there was this guy, he had a head injury. He got hurt in a motorcycle accident, his girlfriend was killed but he got a head injury. Because he was so nasty and uncooperative, they totally de alt with him differently. Th ey put the time in that they were supposed to put in with him, and that was it. Whereas with me, my therapists came in on Saturdays and took me out to the mall, they took me out to taverns to have lunch. The nur ses, on their days off woul d come in to sign me out and take me shopping. So it strictly depends on the person. Your motivation motivates the people around you that want to help you. If it's a teenager, hopefully the therap ist or the people working with them, no matter what their attitude is, no matte r who the child is, they push them no matter what. Versus an adult who has an acquired disability, they cant be pushed away easily. Take me as an exampleas a 32-year-old woman, if I had a very nasty attitude, always nega tive, I think a therapist w ould give up and say, well I'm going to teach you what Im going to t each you, and then I'm going to go home. Versus, Im that 32-year-old woman who co mes in there with an attitude of Ive gotta do this. They're more motivated to help you. They're going to help you; they're going to work harder for you becau se you are putting forth to be better. Versus that teenager who is going to be pushed from day one, cause he's got his whole life ahead of him and they're going to push him the hardest. Until they just totally shut down on themselves out of rebe llion. And then when they don't want
73 to do anything, the therapist is going to say, okay, I'll leave them here for their parents. But I think initially they're going to push them both. Race and Disability Theresa has definite opini ons on race and disability: I think when it comes to the white community, there's a different embracing there. There's a different pus h there. Throughout the black community you have differences. Like, for instance, a kid that is born with a disability, you have a different motivation for getting that child to be as normal as possible, when theyre born with it. They want them to be normal. They want them to be accepted. They want to let them know that they can do everything that everybody else can do, they just do it differently. I think that's why black people aren't exposed to disabilities, because they think, why, what's wrong with her? I thi nk black people have it in their mind that things like that don't happen to them, because they don't see it. And therefore, it's not true. So it's just like when our kids are born with cerebra l palsy, and our kids are born with other handicapping conditi ons, we don't deal with it because something is wrong with herMama di d that, something's wrong with her. Because what did she do to have her ch ild born with that? Because we are not exposed to it. We don't think that can ha ppen to our kids because it's not put out there for us. I think that goe s whether its black or white, as far as if its a congenital disability.
74 In the white community you have that parent that financ ially or socially will stick by you to the end. In the black community, that support system may be absolutely, positively zero. So, it is totally different how its done and the way its done [in the black community as co mpared to the white community]. Gender As far as race, gender and disability are concerned: I think white men accept all aspects of disabilities, as far as urinating on themselves, as far as being incontinent of bowels, all that kind of stuff. Black menNah. To be with a woman that some body else has to come in and help in the morning, get up to bathe, and so fort h or even if the man had to get up a couple of hours early to help his wife a nd get her up in the morningI just don't see a black man doing that. I think a black woman will take on the disability of the black man easier. She'll be more able to take care of that man, and clean his butt and do all the kinds of things that he cant do. When asked if it would it be preferable to be a male or female with a disability in the white community, Theresa responded: I think it depends on their status quo [financial, SES]. I think it depends on, if it's a man is in a very high-po wered, high-paying position, and he has an image to uphold, I don't think he would have that woman with a disability that he would have to do all that work for. If he did, she would be the woman at home where he would have another woman on th e side. I think that when they're both
75 not poverty level, but middl e-class, I think he woul d find it more accepting to where he would be more willing to do those things for her, or could afford to do those things for her. Acquired Versus Congenital Theresa makes the transition from race and disability to acquired versus congenital disability. She relays: I think that as far as the black community, youre cursed either way you go. I think if you acquire it, people tend to not know how to take it. But then again, if it's something that you are bor n with; people are more stand-offish. They're more stand-offish to the point where they don't ask, don't tell. If I don't know then I don't have to worry about it ; so, they don't ask. But if it's acquired and they knew you before you got the disa bility, they hang around trying to figure things out, and then they ask questions. It's a 50-50 thing and it depends on the person with a disability. I guess when you' re born with it, the system helps you more. Disability and Assistive Technology When asked if a person with an acquired disability or one born with a disability has an advantage getting assistive technology, using assistive technology, or learning assistiv e technology, Theresa replied:
76 I think if you are born with a disabi lity, you're better off. But then again, no. Because if it's an acquired disability, if it's going to help you get out there better than I take that back, I guess eith er way. When it comes to computers, it's as easy as getting a driver's license, anybody can get one, versus a rent-to-own, versus going to Wal-Mart and buying it, putting it on layaway and paying for it. So I guess it's the same for being acquired or if you're born with it. Blending It All Together According to Theresa, a lot of the issues associated with disability, such as race, gender, age and inception of the disability are intertwined. Y ou cant look at one without including another: I think that as far as John was con cerned (he had an acquired disability), I think he was embraced by more people just because of the fact that people knew him. This actually happened while we were in middle school. Johns sister was on the basketball team too. So people just embraced him differently. He hung around with a different crowdthe girls bask etball team, boys basketball team and football players. Athletes come together you know. He was embraced by that sort of people. Where Kyle, (the one with the c ongenital physical impairment), was embraced more by his surroundings, the people in his classroom. He didn't really get into the athletic world or the in cr owd. And it was mostly girls that were surrounding him, mostly white girls.
77 So where John hung around more bl ack kids (John had an acquired disability, but was white), it was more like they (individua ls with acquired disabilities) were embraced more by the athletes. So John was more popular; he went to football games because he had a wheelchair van. Our senior year is when he learned to drive also. He did almo st everything we did. He would go to (basketball) camp with us in the summer; watch us play games and all. His friends were really good to him. They would come and take him to go fishing; take him in a boat and all. His friends would come take him to do everything. Theyd put him in the van and go everywhere. John ev en had a girlfriend. That surprised me at that point and time too. He dated a black girl, too. He was embraced more by blacks because that's just who he hung around. Theresa doesnt necessarily think that the black community is more embracing, more supportive of a person with a disability: It depends on how you look at it. I think if its something new. When people see me riding down the road every da y theyre just at a disbeliefYoure always smiling, youre always happy, youre always this, youre always that, you know. You know it's more of a disbelief thing because they are not exposed to it. It's not something that they're exposed to. It's not something that you have to embrace in our community, I think in the black community its more so something that happens to you. I'm not sa ying it doesn't happen to people, but you don't see it because they don't continue to live their lives in the community. They look at it as a curse ra ther than a blessing.
78 I think it's something totally as a black community that were not exposed to. So you don't know how to embrace a pe rson with a disabi lity; you are totally caught off guard. You don't know what to ex pect. So you go to a lot of people in the black community and ask them what a paraplegic is and they have no idea. For me to explain what happened, and what I can and cannot do, they're just totally amazed. They're like, huh? They don't understand the physical challenges of getting out of bed. They don't understa nd the physical challenges of getting here, or taking a shower, or ju st eating, or just wanting to be me more than just a statistic and not sit home and just collect disability. Why are you working, that type of thing. So it's just a whole different outlook for us, for the [black] community. As far as the white community and di sability and age a nd congenital versus acquired, Theresa thinks that: When it comes to the white community, there's a different embracing there. There's a different push there. Throughout the black community you have differences. Like, for instance, a kid that is born with a disability, you have a different motivation for getting that child to be as normal as possible, when theyre born with it. They want them to be normal, they want them to be accepted, they want to let them know that they can do everything that everybody else can do, they just do it differently. I think that goes whether its black or white, as far as if its a conge nital disability.
79 But when it's an acquired disabili ty, youre fighting a different battle, especially when it comes to age differences at what age were they hurt? At what age did they get the disab ility? What are th eir support systems going to be like? Do they have a support system? Its a to tally different fight. But it goes past the disability, it goes back to the person with the disab ility. I think, speaking for myself, when talking with the elderly pe ople in the black community, when they finally get around to speaking to met hey ask me what happened and they always say Im smiling. Whereas most white people that see me, theyre not sure if Im faking or if they come up to me, am I going to rob them or something, you get that I dont know if thats just the way the world is today, not trusting people and all, but its kinda funny seein that Im in a wheelchair and all. Its more stand-offish for them in the white co mmunity; where in the black community, theyre more apt to act different. Disability and the Civil Rights Movement Comparing the disability movement w ith the civil rights movement, Theresa relays: When you look at the civil rights m ovement, you look at protests that black people were trying to be treated equal, saying th at they have to have the right to work, they have to have the right to make a better life for their family, to not be judged by the color of their skin, but by the character of who they are. If youre going to judge a person, judge th em by meeting them and what they
80 present to you. If they presen t a lazy bum, then judge them as that. But if they are productive and working hard, judge them by that. And its the same thing as being di sabled. Dont judge me because you see this hardware attached to me. Its the type of thing where the wheelchair doesnt define who I am; I define the wheelchair. Its not the oh, you see the wheelchair right there with the girl in it? Its the girl in the wheelchair. Im not just the wheelchair. Im the girl sitting in the wh eelchair. The wheelchair is not who I am. Im the person in it. Its the same as l ook at that person in that car. You dont want me to judge you by the car you drivedont judge me by the wheelchair. So its really one and the sameyoure just fighting to be treated equally, fighting for the chance to prove yourself, fighting for the chance to be treated equally. Just as individuals with the same skin color should not be judged based solely on the color of their skin; neither should it be assumed that all people in wheelchairs are the same. Theresa explains: I remember when I first got hire d here; they hired somebody else in a wheelchair. Well they took that person to be like me. You cant expect every person that you hire in a wheelchair to have the same abilities as me, to have the same drives as me, to have the same att itude or personality as me. And they were totally shocked because that person didnt work out. And I had to tell them that, You know, you cant judge every person th e same. Everybodys not going to be the same just because they are in a wheel chair. My whole thing when I came to work was that I had a point to prove. Everybody else kept saying that I couldnt
81 do it. Well, you might be able to do this; you might be able to do that. So I was like okay, Ill show them. Disability and the System As a person with an acquired disabilit y, Theresa sometimes becomes frustrated with the system : I get up and go to work every morning. I work, I pay my bills and so forth, but I'm dependent on someone coming to he lp me get out of bed and get dressed. If no one shows up to help me, I'm in be d all day. With my job, they are very patient with that. But as far as insu rance companiesthey say we cant send someone out to help you do that because that's a teaching skill. But if I was on Medicaid, you would send a nurse out ever y morning. But I can't get Medicaid; I can't get disability, because the state of Florida doesn't consider me disabled because Im employed, which is fine. But if I was to, say for instance, lose my job, become unemployed, you would give disability, you would send a nurse out every morning to get me up, you would give me Medicaid, you would give my children money. Youd do all this because I can't work now. You'd do all this to help me get back to work, but instea d of helping me keep employed by sending that nurse out, you won't do that. That ange rs me most of anything. So you have a person who doesn't want to become a st atistic, who wants to make their own money, but you wont help now. It just doesn t make any sense. It's almost like a rule of fate. There are times that I thought it would be easier for me to go on
82 disability, have my kids raised by thei r dad, put myself in a nursing home and forget about it. I couldn't do that; but it's almost like that's what they want you to do. It's like, why try? Why try to better yourself ? Why try to become independent? Why try to do all this stuff right here? They don't want you to do that. The state doesn't want you to do thatthat's the message the state is giving to the disabled. Individual before Disability It depends on the person with a disability is a recurrent theme throughout Theresas recount of her life history and that position is reflected very strongly as she relays her opinions on disability and race, age, gender, family life, assistive technology and acquired versus congenital impairments: It boils down to being yourself, being who you are. Respect me first because I'm Theresa, then respect me because I'm a mother, then respect me because Im disabled. Those things are mo re important than respecting me as a black woman. And that goes back to be ing a person, being who you are. I am a person with a disability; I am a person first. I have just acquired something that you haven't acquired yet. Theresas identity is intertwined with he r disability. She reflec ts her individuality before her disability: I was talking to a friend a while back and I was telling her that it was funny that I always said I wished that be fore I got hurt, my biggest regret was
83 having my kids so early. I could have b een playing in the WNBA. I could have been doing this; I could have been doing th at. If I hadn't had Brandi when I was in school, I would have gone to college, I w ould have played bask etball, if I hadn't done all this other stuff. But if I hadn't had my kids early, would I have the same drive that I do? No, I hones tly don't think that if I hadn' t had my children before I had my accident I would be person that I am today. Just because a lot of my focus, a lot of my drive is my children, to make sure their life isn't disrupted, to make sure that their life is what I percei ve it to be as normal. My past makes me who I am now. To change something may be changing a vital part of who I am. Knowing who you are is a big part towards accepting what you did wrong or right. I haven't led that person's life; I don't lead that person's life I made mistakes. I'm going to make mistakes. But at the same time, those mistakes made me the person I am. The good things are part of who I am and the bad things are part of who I am. I may have a halo, but its tilted a little bit, one side may have a horn. Im not going to be the perfect person; I'm not going to live up to everybody's standards. I'm not going to pl ease everybody; I'm not going to make everybody happy, everybody's not going to like me. Okay, so what? That's life. Issues in my life may suck, but my life doesn't suck. I have issues that suck, but those issues are not going to ove rwhelm me so that my life sucks. No, thats not going to happen.
84 Summary Theresa has some final thoughts on what it is like to be an individual with a disability: I dont know if I said this to you be fore but, I think that when people talk about being handicapped, and I always refe r to myself as being disabled; I'm not handicapped, I'm disabled. Disabled is a compound worddis is a prefix of able. I no longer am able to do what I used to do; I'm disabled. I think of a person who is handicapped as being born with it. Th eyre handicapped; this is something theyve always had, and they're trying to get past; theyre handicapped. You got it from God. When you get a handicap, it's something you have; you try to get past that handicap, you have to deal with it and go on. I just think if people stop looking at a disabled person as a handicapped person, if you stop defining people by the situ ation, and define the person first, all of us would be better off. As a disabl ed person, don't try to define us, let us evolve, let us become who we want to be, let us be ourselves first. When you define a person with a disability, you put a limitation on them. Self Description Theresa accurately describes herself as persevering and committed. The phrases that Theresa chose to best desc ribe herself on the Self Data Survey (Morse, 1978), include never say never, take nothing for granted, never put off tomorrow what can be done today, a nd dont try and categorize me. The
85 healthy commitment to her family, her job, and her continuing self development are reflected in her life history. She sees herself as a role model for her children demonstrating what can be done. She is a valued employee; the company for which she works is willing to accommodate a flexible work schedule to allow her to attend classes. The fact that she driv es her power wheelchair five miles back and forth to work and school every da y is testimony to her dedication. When asked how the person who knows her best would describe her, Theresas responses included treat her like everyone else, never feel sorry for her, and just as stubborn. Theresa prid es herself on her healthy attitude of being differently able. When she origina lly started back to college in pursuit of a degree in social work, she wanted to work with females who had become paralyzed. She has since expanded her intere sts to include wanting to work with juvenile offenders, perhaps in a half-way house. She is certainly secure enough in who she is to be able to give of hersel f to others to try to help them. Theresa explains, a lot of my family member s and friends call me for advice and sometimes just to have someone to listen to their problems. I never judge them. Im just there for them. I may not always ag ree, but I try to be what they need at that time, whatever it may be. As far as her children are concerned, Theresa feels that, I try to be mom and best friend. My children and I talk about all subjects. I am learning when to be mom and when to be friend. Theresa views herself as a very strong, independent woma n with enormous faith.
86 Reflections and Response to Theresa There is a tendency for me to assign nobl e characteristics to certain individuals with disabilities, which they may not de serve. Green, Davis, Karshmer, Marsh, and Straight (in press) discuss the stigma associat ed with being disabled and the impact that having a disability has on the person with a disability and on societ y. Im not sure if the tendency to assign noble characte ristics to certain individu als somehow makes me feel better about myself by indirectly generating em pathetic emotions towards the individual with the disability, or if a ssigning these noble characteristics raises my own self-esteem by recognizing another persons worth at a higher level than is warranted, thereby raising my own level by association. Either way, Th eresa points out that I have failed to recognize the individual in the wheelchair as an individual: Dont judge me because you see this hardware attached to me. Its the type of thing where the wheelchair doe snt define who I am; I define the wheelchair. Its not the oh, you see the wheelchair right there with the girl in it? Its the girl in the wheelc hair. Im not just the wheelc hair. Im the girl sitting in the wheelchair. The wheelchair is not who I am. Im just the person in it. Its the same as look at that person in that car. You dont want me to judge you by the car you drivedont judge me by the wheelchai r. So its really one and the same. Respect me first because I'm Theresa, then respect me because I'm a mother, then respect me because Im disa bled. Those things are more important than respecting me as a black woman. And that goes back to being a person, being who you are. I am a person within a disability; I am a person first.
87 It appears so trite, How do you treat a person with a disability?Like a person, but more than any other poignant quote or pers pective that Theresa may have shared, this message was eloquently communicated through her verbal and non-verbal messages. Of course Theresa was equally eloquen t in her messages about the parameters associated with disability. She talked a bout race and disability, about gender and disability, about age and disability, about family life and disability, a nd even a little about assistive technology and disabili ty. As a black woman [agai n, Theresas preference of designation], Theresas observati ons about disability and the black community appear to cross all other areas of interest. Whether a pe rson is born with the disability or acquires the disability later in life impacts how the bl ack community reacts to and responds to that individual. Theresa relays that there is a f eeling of shame associat ed with having a child with a disability and the parent s main concern is helping th em get over and helping the child understand that they can do everything that everybody else can do, they just do it differently. Yet a person with an acquired di sability is often seen as a person out of context in the black communit y. People dont know how to r eact to me, Theresa relays; and I am the first black woman with a disability that I have known. As a pediatric physical ther apist working with children with conge nital disabilities for 20 years, and as an assistive technology equipment provider for th e last ten years, I have not appreciated the lack of exposure that individuals with physical impairments receive in the black commun ity. I have been to many patients houses in the black community in varying roles as therapist, as equipment supp lier, on behalf of the school system, and as an advocate, and as a friend. Ye t I was never made to appreciate that I was
88 seeing these individuals in their home, behind cl osed doors. In that respect, my eyes have been opened to discrimination that occurs within cultures against individuals with physical impairments. Notwithstanding that Theresa is one persons opinion and perspective, but it is a truth for her, a nd therefore bears merit for thought for me. What became apparent towards the end of our discussions is how Theresa had managed to incorporate philosophies of disabi litiesthe medical model versus the social model, parallels of issues of discriminati on between whites and blacks compared to ablebodied and disabled, and had intertwined th e areas of interest of race, gender, race/culture/ethnicity, fa mily life, time of onset of disa bility and assistive technology in a way that each was inextricably linked to the other. I had thought that there was a marked distinction between the erudite philosophers writing for the disability movement and the working class people with physical impairmen ts with whom I socialized and worked. Even though researchers such as Oliver, Priestley, and even Sacks when he was temporarily physically impaired were speaking for the disability movement as individuals with disabilities, I felt they were disenfranc hised from the person on the street who was in a wheelchair. Not that these skillful research ers were out of touch with the day-to-day indignities associated with being a person with a disability, but that they were writing from a philosophical perspective that was not necessarily connected with the common person with a disability. Although Theresa is well on her way toward s an advanced degree, she recounted her life and the areas of interest in su ch a manner as to connote the common person perspective. By so doing, she demonstrated th at the issues of concern of age, gender,
89 race/culture/ethnicity, time of onset of disability, fam ily life and assistive technology not only played a significant role in her life and helped her de fine who she is, but that her views, observations and outlooks about disability coincided with authors and experts in the disability movement. Theresa used differe nt words than the experts, but, in my opinion, spoke far more eloquently about what it is like to be a person with a disability. In Theresas case, I was not wrong in a ssigning noble character istics to her. She would have those characteristics regardless of her physical condition or form of mobility. Theresas observations were candidly unique and poignantly sh ared. I have a much better perspective of what it is lik e to be a black woman in a wheelchair from Theresas perspective.
90 Chapter 6 ELLEN: FAMILY IS EVERYTHING Ellen is now 62 years old. She is white and was born and raised in the Northeast corridor in Connecticut. The first time she met anyone from an ethnic background differing from hers was when she was eighteen and living in a reside ntial hospital school She fell through a glass skylight on a roof and became paralyzed from the waist down as a result of the fall. Ellen acquired a p hysical impairment when she was fifteen. Family is everything to Ellen: They were good when I had my accident when I was 15. My mother was 37; my father was the same age; they were born in 1910. My father was used to people with disabilities. He had a brother who had infantile paralysis and muscular dystrophy; they used to put him in a wagon and took him everyplace. He died by the age of 17. Even after Ellen got married, her father was there for her: Of course my father had to build the ramp. Th ere was no question, he did whatever I wanted and needed to have done. Ellens father died at 54 of a coronary thrombosis two weeks before he turned 55. Her mother died at 90 in the year 2000. Ellen has always been afraid of death. Ive always been afraid of death; they thought I had died when I fell through the roof. I thought, O h well, Im dying, so what? Because that's what I thought, because that's what it felt like and I did die. They couldn't find any
91 breath in the mirror or anythi ng like that, and they gave me adrenaline I guess, and brought me back. And I wasn't told for quite a while after th at that I had died. They thought I was dead. But I dont reme mber seeing anything like people say they see. I don't remember seeing any of that. The Accident The Fall Her accident occurred when she was 15: I was bored, a lot of kids were bored; you had nothing to do, and no places to go. So we had this thing of climbi ng roofsclimbing on top of roofs in the downtown area. And on that roof there was coal, for some reason, I don't know why. There was coal over near the area where the door was when you got onto the roof, so we never went that way. We us ed to go around coal piles to go across to the other roof. And I was leaning over the roof and looking down and I had just lit a cigarette and I looked down and I saw my boyfriend was downstairs and he was yelling up to meYoud bette r get off the roof and come down or else we are through. And my temper took over and I said, who does he think he is? I stormed off and I went where the coal wa s, instead of around where we used to go. And there was a black glass that I stepped on. And when I stepped on it, it turned out to be glass because it was painted black because we used to have blackout days back then. And you had to pull black curtains and stuff down whenever they had the air raids. And that was painted black, and they never
92 changed it. And I went down 40 feet in an air shaft. And there was a bench down there, and I landed on the bench and I pa ssed out; I don't remember landing; I just remember putting my foot up and then starting to go down and that was it. The Hospital Ellens life was changed forever: I remember when I got to the hospita l and they were trying to get my jeans off, I couldn't feel them doing that and I just started yelling at them, dont amputate my legs, don't amputate my legs . I thought I had broken my legs. I didn't know. I had never broken a bone in my body before. I had no idea what sensation or what it is you get with a broken bone. But it was a broken back. They said that I broke my lumbar spine, the fi rst and second vertebrae. Later on in years when I was at Lucerne and had Baclofe n, Dr. Green looked at my x-rays. He didn't think it was the lumbar spine. He said that it was thoracic, T9, T10 around there. So I don't know, that's what he sai d. But I was told it was lumbar first and second vertebrae. Ellen relays what it was like in the hospital: My mother and father had Blue Cr oss/Blue Shield. But after eight weeks of being in the regular two-bed room, a semi-private room, insurance was running out, so they had to move me. And they moved me down to the woman's ward which they had nicknamed the snake-pit. When they put me down there, they left me on my back all day and all night. I ha d a cast that was put on when I had my
93 accident. I lost 20 pounds, bam, just lik e that. So then you could put your hand there and move the cast around. Well, it cau sed a pressure sore on the spine. The doctor came in and took the cast off and left me laying on the front of the cast on my stomach, he took the back off so I could lay on my stomach. And I was laying there and it was getting very, very painfu l laying on the cast. I started crying and my father came in and he was saying (I had a toothache) you shouldnt be crying about a toothache with all this going on. I was laying there crying and they had a group of people that were going to become nurses, they were going to go to work there. They had them come around and here I was they had them coming around to look at me. My sisterin-law, who ended up being my sister-in-law after that, was one of the people in that group and she thought that was terri ble that they did that. They brought everybody in to look at me laying there in the bed just like that, crying away because I was in such pain. And she always remembered that. They had separated the cast; they put the cast on the floor, the back part, and the cleaning lady came in and took the cast and threw it away. And everybody was saying goodbye to her. I guess they t hought that the doctor was going to have her fired. Half my cast goneshe threw it away. So I never had another cast put on after that. And I was there about eight w eeks. And then Dana, my sister-in-law, was working in the snake-pit. It was her and her friends that had come in; it was that group when I was in there. That's where she was working.
94 So when I went down to the woman's ward and they put me on the sun parlor. They started using the sun parlor as another room. And they had two or three beds on each side of the doorway, lined up. And then I started getting a pressure sore where I just had surgery on. That was in 1953. I got that and they put me on the striker frame. The striker frame is about as wide as your body is, and I was very skinny at the time. You get flippe d over on your back, and you get put in like a sandwich, and you get flipped over on your back or over on your stomach and they put this thing here that your face goes through, when you're lying on your stomach so you can breathe. And that's it. You don't lie on your side. And I always wondered, if I had such a bad pressure sore on my bac k, why did they have me lie my back, unless there was a place there where there was an opening and I'm not sure that there was. So they put you in this thing and they sandwiched you in and they're supposed to strap you in while they flip you over. Well they didn't. I held on, but I couldnt hold on with my legs. So they w ould take chances and they would flip me over, hoping that my legs wouldnt fa ll out. And my mother came in to visit one time, and they had my mother help them. And she could see that my legs were going to fall and she knew that I was worried about my legs falling out. So she tried to grab my legs to hold them, and she got her arm caught in the machine as it was turning.
95 So they flipped me over to my stomach and left me sandwiched, and grabbed my mother and took my mother to emergency as I, the brat that I was, was screaming and yelling, get me out of this thing. I didn't know what happened; they didn't tell me what happe ned. They just took off with her to emergency to get her wrist sewed up while I'm in this position. They should have had another nurse and put straps around my legs. When I went to Lakeville, they put straps around so that my legs wouldn't fall out. Somehow or other I was able to ge t out and look behind me, and that was the first time that I had ever seen it (I ha d never been in the hospital other than to get my tonsils out), to see that sore, y ou could put your fist in it. They had to debride it and do all kinds of things to it, it was so bad, and it never healed that much because it was so close to the bone And that's what's been breaking down on and off all these years, until the doctors just went in and did a muscle flap transplant. I also had surgery that took some of my feeling away. It really surprised me that they did that kind of surger y because I was only 16 or17 years old. They did what they wanted. They got permi ssion from my parents. But they didnt know what was going on. They didnt know any of that stuff.
96 Retrospection If there was anything that she coul d change in her life, it would be: I wouldnt go on that roof. I abso lutely, positively would not have gone on that roof that night. If I could go back, Ive said many times, I wish I could go back and change those two seconds of my life. That screwed it up. Changed it certainly. I guess in some ways Im more fortuna te because I cant feel certain areas because then it would cause more difficulties. Id probably hurt more than I do now. My muscles, my shoulders, and my arms are killing me all the time, and my neck. So I could imagine what it would be like if I could feel everything. So would I like to do stem cell and get everything back? I guess I would even though I know I would be in an aw ful lot of pain there for a while. My husband, Bill has been telling me for yearsyou dont want to get everything back; do you realize how much youre goi ng to hurt when you do because of all this thats been going on over th e years? Yeah, I still would. Would I like to be able walk again, like normal? Id love it. I can get out there dancing in a wheelchair, but its now here near like being able to get out there and dance. Id love to be able to roller skate. I used to be a great roller skater. All those things. And do you know what the funny thing is? Not too long before my accident I stood in front of the mirror in my bedroom and was looking at myself and said, thank God Ive got my legs. A nd then I had my accident. I feel lucky
97 with my diabetes when I see my brother, but still I need to exercise and lose weight, but Im not doing it. I wish that I could get up and walk like I used to. I used to love to walk. Family Life The Early Years Ellen grew up as the last of four kids. Im the baby. I have a sister that is the oldest and I have two brothers in between. When she had her accident she was the only one home at the time. My sister had gone into the Air Force, my ol der brother, John was in the service, and my brother Bill had taken o ff; he had come to Florida. He was 16; he was a year older than me. So at the time it happened, I was the only one living at home. It was very devastating to my parents. But it wasnt the first time she had fallen from a building: I got an upside down v scar on my lip from when I was three years old and I fell over a railing. A friend of my mother's was babysitting my brother and me and we were on the porch throwing pe bbles over the railing and looking to see where they went. I got up on the railing to look over to see where mine went and I started to go and my brother grabbed my feet but he couldn't stop me; he started to go with me, so he had to let me go. So my brother ran in and got the babysitter and she took three flights of stairs like it was three st airs. There was a black kid that just happened to be standing down there and he caught me. I was headed for a picket fence before he caught me. That's the story that I've been told. I don't know
98 how come he was there, or I dont know I was only three years old. I dont want to fall three stories again. Third time Ellens family didnt make much money when she was growing up: My father was a local truck driver. He drove for a company called Stone Express. He delivered to Jordan Walsh and Pisces Basement in Boston. What he did before that was he drove, I'm not su re which company, but around in the city where we used to live he used to driv e the truck and bring home cow skins from cowsthe skins from the cows and stink up the whole area, the whole neighborhood. He had them in the truck and he would come home for lunch. And he would stink up the whole place; I re member that because I would be coming home from school for lunch, and here w ould be dad coming home for lunch. Then he went to work for Stone Express. My parents didn't have very much m oney; my father used to make seven dollars a week back then, and we lived in a four room house with four kids and two parents. It waswe used to ca ll them twin housesit was two houses together where the middle of it was a cem ent yard. We used to play hopscotch in the cement yard. The houses had cella rs. And we had two stories. My mother stayed at home until I was in school. Then, she worked in a laundry. Back then you used to send yours sheets out to a la undry, and she did that. I can remember going to the laundry where she worked. They used to have these great big long mangles, that they would put sheets on, and they would have to come through the mangle. And then they would take them and they would have
99 that special way of folding. She did that fo r a while and then she went to work at Vernons Plastics and she worked there pr etty much for the rest of her working years. Until Vernon left Massachusetts and my mother left Massachusetts and then she went to work for another plastics factory. I think she us ed to pull plastic and I'm not real sure exactly how she did that. And I think she had carpal tunnel and I think she didn't reali ze it; no one ever realized what she had but her hands used to bother her all the time. And she wa s in her forties before she ever learned how to drive. Back then, the women didn't drive that much. My father used to drive us back and forth to Boston. Adolescence Ellen had just starting dating Danny when the accident happened. But they stayed together as a couple for four years following the accident. Danny used to come see her in the hospital every day until the insurance money ran out and she had to go to a sanatorium: Danny and I went together for four years. We had just started going together not long before I got hurt. We were planning on running away to get married when I turned 16 in Decem ber (the accident was the previous September). I was supposed to be teachi ng him to dance and we were going to go to the radio station dance the next night I was supposed to start teaching him to dance the day after I had my accident. I guess he does okay now [dancing] I dont know. [They are friends to this day].
100 Of course I got hurt, and that t ook care of that. And my father was allowing me for the first time to go to the midnight show of Frankenstein. So Danny went to the dance after my accident, and they announced things about me over the radio. And a popular singer was at the dance and she signed dollar bills and gave them to me. I dont know what happened to them. And when I went to Lakeville Sanatorium, not sanitarium [Ellens emphatic clarification] it wa s an old TB hospital, it wa s two hours away. And my parents would come one day on the weeke nd. After a while I talked them into letting me go out for rides. Civil Rights Ellen was born in Lyon, Massachusetts in 1938. For her, growing up in the 1940s and 1950s in urban Massachusetts near Bost on did not provide much opportunity for racial interaction. When I aske d her if there were any kids with differing backgrounds at the sanitorium where she lived, went to sc hool, and underwent rehabi litation, she asked me what I meant, then rep lied, I knew one guy, his name was Gerald. He was black. I remember he was tall, thin and he walked on crutches. We were friends. We never went out; we were just friends. Ellen relayed that there were only one or two individuals who were black at the hospital sc hool. She implies that race has no particular bearing on disability, either on having a disability, or how people view an individual with a disability. While Ellen does not gi ve any indication of racial prej udice, she still feels that:
101 obviously Id rather be white. Th eyre still having a lot of problems with blacks and we were fortunate to be born white. And, sure, Id like to be young. There are too many problems. You have enough problems being disabled and then it adds to it because of age. But ours are added to more because were disabled. So more aches and pains in there because were disabled. The Medical Model However, it does not appear that Ellen has allowed the f act that she is disabled create barriers in her life. She met her fu ture husband, Bill at the hospital school for the handicapped (Ellens term). Bill had been bor n with cerebral pa lsy and had undergone numerous surgeries to correct physical de formities. Ellen and Bill shared a medical background and a medical orientation toward disabilities. After Ellen and Bill were married and lived with her parents for two years, they bought their own home and worked for the original Goodwill Industries, Ellen as a cashier and Bill as an electronics technician. They didnt make a lot of money: We both worked at Goodwill and we left and went to work at Ace Electronics, so we used to go to work together. The guy hired a lot of handicapped. I guess it was to his advantag e, too. But we went from 55 cents an hour (at Goodwill) to $1.10 an hour at Ace. And thats $52.00 a week for the two of us. Id get $30.00 if I worked si x days. I was a cashier there.
102 Travel, Vocation, and Employment But Ellen had always wanted to go to California: Bills brother was over there [in California]. So we went to their house first. We were only in Long Beach, Calif ornia for five months. We drove out there, Bill and me and the dog. On the way out to California we got the last motel room at Howard Johnsons in Pennsylvani a during a snow storm and we got stuck in mud in Indiana. And he had German boots that his brother had gotten in Germany, and he had those boots on and he left them in the mud. Hes walking on his crutches in the mud, trying to get help. And this guy says, dont you people have any mud back East? It took us about a week to get out to California. And we stopped in Las Vegas. Thats the first time that we ever went to Las Vegas. Bill had a job in Fullerton, California before we left Massachusetts. And when we got there, the job wasnt ther e. So we drove around for five weeks, looking for a job. He finally got a job with Air Research Corporation and Richard and Kara (brother and sister -in-law), wanted us out, so we got a small place. He worked there for 2 months, and you ha d to work there three months to be considered full time and they laid him of f. He was the last one hired, so he was the first to go when they cut back. They gave him severance pay, so we called up New England Instruments to see if they wa nted him back. They did and they even sent us the money to get back home. So we left in July, we bought a used U-Haul trailer and packed it full and we set out. We went back through Las Vegas. It was hot. We bought a swamp
103 coolerit had water in it and you put it in your window and rolled up your window and the air blew water mist into your face. But when we got back East and it was cold, we couldnt get it out of the window and I nearly froze. We almost got killed in Wyoming. We di dnt have the right h itch and the trailer started swaying and all. A nd I had to get out and look at it. And we were on the edge of an embankment that went down nearly 30 feet. Why I didnt fall down that embankment in my wheel chair, Ill never know. We drove a 61 Ford that could on ly go 10 mph up a mountain pulling that trailer. Truckers used to get so mad at us. They went back to New Hampshire and liv ed there for a year or so. They then moved to Massachusetts: We bought a ranch style house in Be llingham, Massachusetts in 1968 and lived there until Bill got laid off. Then in 1970, Bills mother died; she was exactly the same age as my father when he died. Before, we were both wondering if we would make it past the age of 54 (t heir parents had died at 54). (They are 66 and 65 now). We didnt pay the mortgage for over a year because Bill had been laid off and we werent getting that much from unemployment. I had already started getting disabili ty at that time. I was gettin g $ 98.00 a month. It wasnt very much. So we finally got in touch with Ted Kennedy and no one bothered us about the mortgage for quite a while. Then they started foreclosing on us, so we had to move. So we ended up getting a 14 by 60 mobile home. We had it built for the disabled. We had a great big long ramp on the trailer, and I used to shovel that
104 ramp. Id just take the shovel and push it along in front of the wheelchair. I cant stand to be penned in and not be able to get out, so I kept the ramps clean. The cold winters got the best of them, and they moved to Florida: We moved to Florida because I wanted to get away from the cold. Thats why we went to California. We wanted to get to the warm weather. My grandfather and grandmother and aunt and uncle lived down here in Florida. We got the house through Farmers Home (a ty pe of funding agency). We moved in here in 1978. At first they werent going to give us the mortgage because we were both in wheelchairs. But then something came through that said that you couldnt discriminate. So they stepped all over themselves trying to lend us the money. John Hill, I remember his name, with Farmers Home. He was a black guy and he didnt even want to keep the appointment. And then they said that I had to ha ve a job so I got a job at Belk-Lindsey making signs. But I got fired because I said something to the boss about how he was wrong about changing his mind after I started making the sign and would have to start over. Of course they also asked me not to come into the store when they were having the grand opening because they were going to be so busy and I was in a wheelchair and would take up too much room. So I put in for the program through VocRehab to go to cosmetology school and I got accepted.
105 Starting A Family Ellen had always wanted children, but had come to the conclusion that adoption was the only way that was going to happen. Th e adoption process was not easy for them because both she and her husband, Bill, were disabled: We had tried husband insemination. But we found out that since I had a catheter and because I had leaking around it, that was probably killing the sperm and that was the reason I couldnt get pr egnant. We didnt know that until years later. We did different positions and ev erything else, and we went to the doctor and finally decided to try to adopt. When we went to the adoption agen cy, they asked me all the questions, what kind do you want? Well, blond, blue-e yed, all those things. And then when they found out I was in a wheelchair, they asked me, well, how are you going to do that in a wheelchair? I never told them Bill was disabled. So when they asked, what are you going to do at night? I said my husband would take care of it. So we never could get any foster children. We finally were able to adopt Morg an. Morgan was one of three kids of friends who said they wanted friends or re latives to take care of the kids while they traveled to Arizona. After two years, my sister-in-law asked the mother why she just didnt let us adopt Morgan. She was 21 months when she came to live with us and she was 4 when we moved to Florida. We applied for adoption and right after they officially abandoned her, we immediately went in and applied to adopt her and we got her.
106 I tried to get Morgan in touch with her biological mother a few years back and she saw her the last time we went to Massachusetts. I was able to get Champus insurance for Morgan because her biological father died in the military. I couldnt get her on my social security because she was adopted after Bill went on social security, so they wouldnt a llow us to put her on social security disability. Thats why we had to get her on Champus. Advocacy Because of everything that she has been through, Ellen has somewhat of a unique perspective on being disabled. She acquired a disability when she was 15. She has been married to Bill who has a congenital disability for 38 years. Married couples where both partners are disabled are not all that unco mmon in Massachusetts, according to Ellen: Thats not all that uncommon up in Massachusetts. A lot of it has to do with we all went to one school-the Ma ssachusetts Hospital School. So we knew each other, dated each other and married each other. Everybody was disabled. A lot of people met in those places and marri ed from those places. And people that we knew that werent in the hospital sc hool we knew from MAPMassachusetts Association for Paraplegics, or the Disabled Vets. Another part is that we were so involved with wheelchair games. I used to bowl. I have a 205 game out there. Of course I was bowling with my father and his group.
107 Ellen and Bill consider themselves successful at accessing services and advocating on their own behalf as well as advoc ating for other people with disabilities: So we got a lot of things cha nged for accessibility up there. We didnt have a lot of things then. A lot of thi ngs that young people have now they have because of what we did. And they st ill complain. I dont know if young people get more now because I havent really st ayed in that for a long time now. Were not involved with the groups like we used to be. We used to picket. We picketed city hall in Boston. We used to have meetings with MAP and the alumni association from the hospital school. Down here, we cant get people to get together. We found that out when we tried to get into groups down he re. Everybody was separate. Nobody wanted to get into a group to access things and do things. Other people just went their own ways. All people wanted to do was so cialize. I didnt want to go to advocacy groups to socialize. I dont need handi capped to socialize. I socialize with anybody. On self-advocacy related to the time of onset of the di sability, Ellen thinks: A lot depends on the individual. It s knowledge and what you do. A lot of people dont know anything. People that ar e newly disabled dont know anything. People that are newly handicapped or ol der people that get handicapped dont know anything or you cant get them to do anything. You see some stupid things that they do and you say, Why? When it s out there and you go looking for it, and you ask for it; you dont just go and live with what it is without trying to get
108 some kind of help or asking someone about it. We have people call us all the time and ask us about the van, and different th ings. When they see that van, they want to know how we got it. They have to unde rstand that its quite a process to get something like this. Its not as simple as just getting a ramp. Gender and Disability So far as gender and disability, Ellen thinks: I dont know. Because Bill and I go through different agencies for different things. And I have to say; except for a few times up in Massachusetts when I had problems with Vocational Reha bilitation, other than that, Ive never had problems with the agencies I deal with. When I lived in Massachusetts, I used to get a manual wheelchair from them ever y two years. And I would sell the one I had or give it away. Age and Disability When it comes to age and disability, Ellen thin ks in terms of availa bility of services: I just got in touch with VocRehab again about getting another power chair. Up in Massachusetts VocRehab allows homemaking as a profession. Down here, they say they do; but they dont. They ll put a ramp on the house or something like that if you need it; but thats about it. I dont know if its more difficult to get stuff when youre younger. Up until a c ouple of years ago I was able to get everything I wanted. Ive just been luc ky I think. Ive had bad counselors and Ive had really good counselors (VocRehab). If you have bad counselors, you just do
109 what you can, or try to get a different counselor. Weve done a lot of stuff over the years. Its getting harder now Self Description Ellen and Bill, as wife and husband, appear to be well suited for each other. Both consider themselves indepe ndent. In addition, Ellen sees herself as self sufficient, and controlling. Ellen is committed to task and conscientious about most things that she undertakes. She likes to see things that are started, finished. And when she thinks of something, she wants to do it now. Ellen chose her daughter and her gr anddaughter who both live with her as the people who know her best. Ellens impr ession of how they would describe her is grouchy, mean, that I expect more out of them than they are willing to do. However, Ellen counters this aut horitarian impression with humor as she relays how Bill thinks of her, he thinks I shop too much. One of the indicators of how a pers on effectively deals with lifes challenges is a sense of humor (Markus and Nurius, 1986). Like her predecessors in this study, Mike and Theresa, Ellen in corporates humor into her daily life. She will laugh at the irony of not being able to use the last wheelchair accessible parking space because the lift gate for thei r van is on the side and not the back of the van, and the handicapped parking space does not allow enough room on the side for a wheelchair lift to operate. The humor to her is that she has advocated long and hard for enforced handicapped parking in her community.
110 According to Ellen, she is most lik e her mother. She liked to play bingo, and she was a terrific dancer, as was I, before I had my accident. Ellen has led a productive, positive life. She has raised a family and contributed to her community. She demonstrates how she deal s with life through her intensity and dedication to family and community. Reflections and Response to Ellen I have known Ellen and her husband, B ill, since 1980. We met at the United Cerebral Palsy Telethon. Ellen and Bill were being interviewed as consumers; Bill has cerebral palsy. I was bein g interviewed as a pediatric physic al therapist working with kids who had cerebral palsy. Later, a ll three of us would join the board of directors for United Cerebral Palsy. Ellen and Bill provided the critical perspective of direct consumers to the board as we tried to build programs and se rvices for individuals with developmental disabilities. Ellen kept the boa rd of directors honest and on task because she was bluntly outspoken about what a person in a wheelchai r needs. She never allowed non-consumers on the board of directors the false luxury of providing fluff y, unnecessary programs to individuals with disabilities; hers was the realistic, hands-on needs from the perspective of someone with a disability. It was that perspective, combined with Ellens 40 plus year s of experience of dealing with disability issues, which led me to want to incl ude her life history in this study. I expected from Ellen outright demands and ultimatums on what individuals with disabilities need. What I got was concern and compassion for the family unit as the
111 pivotal influencing factor in an individuals life. If the i ndividual also happened to be impaired, then the family unit was all that more critical. I knew a lot about Ellen, the advocate, befo re we started the interview process. I knew that her self-determination had developed in Boston where services for the disabled were some of the best in the country. Such was not the case in Florida. When Ellen and Bill moved to Florida in 1978, Florida was seco nd only to Mississippi in being the worst provider of services to indivi duals with developmental disabi lities in the United States (Florida Developmental Disabilities Council, 2004). Because services for individuals with disabilities in Florida co mpared so poorly to that found in Boston, Ellens life as an advocate entered a resurgent stage. I first met Ellen under her guise as self-appointed advocate. I did not know Ellen the mother, Ellen the daughter, Ellen the adventurous traveler, or Ellen the wife of an equally strong and independent individual with a disability, Bill. Without using the term medical model Ellen described what it was like growing up, receiving services in the form of treatment, and perceiving herself as disabled from a medical viewpoint. Ellen acquired a physical impairment in 1953 when the medical model was the only perspective of de scribing and treating a disability. From being an unknowing participant in the medical model of disability, Ellen developed a personal perspective of disability. She feels that full inclusion for individuals with physical impairments in school is not alwa ys the best or most appropriate. She feels strongly that the schooling a nd socialization that she r eceived at a segregated school/rehabilitation center/hosp ital for individuals with physical impairments met her
112 developmental, social, educational, and physical needs. Ellen explains, A lot of it has to do with we all went to one schoolthe Massach usetts Hospital School. So we knew each other, dated each other and ma rried each other. Everybody was disabled. A lot of people met in those places and married from those pl aces. It worked for us and for many other disabled people. She met her future husband at the ho spital school and many of her life-long friends are from the hospital school. My interpre tation is that she thi nks that a continuum of services is indicated for individuals w ith physical impairments and that each person should have an active, authoritative voi ce in making the determination about what placement is best.
113 Chapter 7 BILL: IM NOT CRIPPLED Bill is 63 years old and was born with cerebral palsy. He lives with his wife, Ellen, who is paralyzed from the waist down as the result of a fall when she was fifteen. Both Bill and Ellen use motorized wheelchai rs for mobility. They have a wheelchair accessible van with a power lift for transporta tion. Bill lives with his extended family (wife, daughter and her husband and their da ughter) in a wheelchair accessible home that they had built 17 years ago. They had to ta ke out a second mortgage on the house to buy the wheelchair accessible van two years ago. They are both on disability income. Wit turned inwards is cynicism, (aut hor unknown) seems to best describe Bill Even at an early age Bills cynical outlook appeared pervasive throughout his personality. When asked what his life was like when he was growing up, Bills response was, It sucked. I was in the hospital most of the time. Once they found out something was wrong with me, I was in the hospital all the time, un til my father ran out of money and couldnt borrow any more money. Then they said, well, hes going to die befo re hes 21, take him home, and forget about it.
114 Family and the Early Years Bill has a brother who is three years younge r. Bills sister is five years younger than Bill. Bill describes his mother as, nice. But you had to know my mother. She was a different kind of a person, always cheery, sm iling. It didnt seem like it took much to make her happy. Bill seems unsure of what his parents had in common. Bill relays: I dont know where my parents met. Their backgrounds are completely different. My father was a college gradua te and my mother never went to high school; she probably never went past the eight or ninth grade. My father was a biochemist, but he didnt make a lot of money. He was the director of a big laboratory at Wald en Fewes Fishery. In 1940 he was one of five scientists in the coun try picked by the government to do research on vitamins. He used to go all around the country gi ving speeches on nutrition and vitamins, but he hated to travel. Bill was born with cerebral palsy in 1935 and knew at an early age that his life was going to be different: Well, at that time they called it spas tic paralysis. That was the dark ages, you know. Nobody knew much about it; nobody knew what to do with it. They think it was caused because the doctor wa s late and they held me back with forceps. A lot of CPs (cerebral palsy) ar e born with CP because of forceps. Its tender on the brain and when you use for ceps you can do some damage, which is what happened to me.
115 It became obvious. I couldnt stand up. I went on the floor on all fours up until the age of seven years old. So it was always the life of looking at knees. I had terrible problems with my knees at th at age. I used to have water on the knee all the time. They used to have to drai n them. They used to have to put these stinky hot pads on. That would suck. They didnt think there was anyt hing wrong with me mentally. They didnt associate mental retardation with the physical impairment because I could communicate at a very early age. I was able to say a lot of things, big words. I could talk. Most of the spastics couldnt verbally communicate. Bills early demonstration of language foreshadowed his mental abilities and facilitated changes in his life: Because of my apparent intelligence two things happened: the first was extensive surgery at Sinders hospital. When I was seven years old my father happened to be talking to somebody wher e he worked who owned the fishing piers in Boston and was a Shriner. He se t us up with the Sinders Hospital in Springfield, Massachusetts, the Sinders hospital for that area. So we went up there. Of course my father would have taken me anyplace to try to find somebody that could do something. When he took me up to Sinders, they said, well, theres only so much we can do; but we can have you standing and walking with crutches probably within a year. As far as my family wa s concerned, that was unbelievable.
116 The second thing that happened beca use of my intelligence was being enrolled in the Massachusetts Residentia l Hospital School when I was 12. We had an interview. You had to take a mental te st before they would allow you in there. You had to have an IQ that was high enough. You had to show that you could be taught, that you had the capacity to increas e your mental powers before you could get in there. You were given away to the state. I was there for nine years. I came home for summer vacation. My parents knew it was better than what I was getting. The Medical Model Like his wife, Ellen, Bill grew up in a society that defined physical impairments as handicaps and treated these disabiliti es as medical conditions that required intervention. Bill describes what it was like to be the subject of well-meaning interventions: I had surgery twice. Nine months, almost a year each time. I was in the hospital; I stayed right there. They rel eased my knees in the backcut them. They stabilized my ankles. My ankles were turned under; th ey brought them out and stabilized them. And they released the cords in the groin. After they released my knees, my legs would cross over, so they had to release those. And then my handsthis one here us ed to be something like this one. It didnt work. So what they did was they cut the cord from underneath and brought it back over the top. In f act, you can see where they di d it. However, they didnt
117 realize it at the time that if you put a CP in a cast for almost nine months, when you take that cast off, thats where what ever youve done is gonna stay. So when they took the casts off my legs, my legs were stiff. And when they took the cast off my arm, the wrist just sprung right back up here because the pull here was more than the pull there. It pulled th e fingers in and pulled the hand out. So they did some of it (the surgery) first, and then I went back and they did the rest. It was terrible because I had my legs out straight, way out wide because they did the release here and stra ightened the knees and I had a cast from my stomach all the way down to my toes w ith a bar in between with my legs out as far as they could go. And this arm here was up by my side like this with a bar here. For nine months. It was fun when th ey had to turn me because they didnt turn the top part as fast as they tu rned the bottom part so the pain was unbelievable. And they had to hang half of me off the bed because this arm was stuck way out. It was fun. One of my favorite stories from Bill relays how he perceived himself and how he related that perception to other people: You should have seen me when I was younger. I absolutely terrorized people when getting back to my seat on the airlines. I would swing one leg up and way out and then swing the other leg up. Like going into the subwaysI used to be able to go up and down steps. Id fa ll down big flights of subway stairs, and people would just step right over me. And then Id be going up a four inch curb
118 and five people would grab me and try to help me, and Id be down on the ground. I used to jump off the buses becau se the buses didnt kneel down like they do now. So I would get one foot down, and the other foot would be up in the bus, and Id throw the crutches and Id jump and land on the crutches and Id be off. They said the bus driver would cringe every time. Sometimes I didnt make it. They say that walking is a series of c ontrolled falls. For me, every step is a controlled fall. Education Prior to attending the Massachusetts Re sidential Hospital School when he was twelve, Bill had been at ho me going to opportunity clas ses. These classes were for handicapped and problem kids a nd everything from young to old all in one class with one teacher. You made baskets and you colored and you raised hell and got the teacher crying ten times a day. Because of his varied educational experien ce of attending special classes in his hometown and matriculating at a residential vocational preparatory school, Bill has definite ideas about e ducation. Bill explains: I dont think mainstreaming is for everyone. There should be options. Everybody cannot be taught in a mainstream ed school, I dont care what they say. Massachusetts is the only sc hool that did what it did in the world. It combined medical with education. The education wa s not just a simple show up and do this
119 and that. The school was accredited by the state of Massachusetts the same as any other school in the state. Any kid there that passed, that graduated from the Massachusetts Hospital School, ha d no problem getting a job. What hurt Massachusetts Hospital School more than anything is when the law came down that you would be mainstr eamed into the education program if you were disabled. That hurt the disabled a lot more than helped them, as far as the hospital school was concerned. The dow nfall of the hospital school is when they started allowing mentally handicapped there. Bills formative years were spent at the Massachusetts Residential Hospital School. According to Bill, this is where he came into his own: Thats where I became thats where things started happening. I moved out of seclusion into the daylight. I deve loped my own little world there, my own system at the hospital school. I had a re putation. It was one way to get rid of people that you didnt want around you, keep people at a di stance, keep from letting them in. I came up through other ages, through other leaders that were there, and then eventually they would dr op off and others would take over and so the last few years that I was there, it wa s sort of my turn as overseer of the campus. I got my own way. Bill describes the hospital school: You had a couple of hundred kids th ere; girls on one side, boys on the other in cottages, and a big hospital. The place was like a college campus. There were a lot wheelchairs, bed carts, everything like that.
120 The education was the best you could get because your class sizes were five, six, ten at the most, you know, one-toone. Besides regular school subjects, they had shop, shoe-making, brace-ma king, watch repairi ng, and printing. Canyon (Massachusetts Hospital School) was an unbelievable place. It was unbelievable for the people who went there and for what ha ppened to them after they left there. There was the whole thing of buildi ng relationships. Year after year, even after I left, there was a c onnection there to when you got outside. You still had friends. You built on those friendships. After we got married we went to weddings of other kids who were at Ca nyon. There were more married handicaps in Massachusetts than any place in the country. There was a whole bunch of us. We had clubs, we had meetings. But it wasnt always the ideal setting fo r Bill. During the polio epidemic in the 1950s, attendance at the residential sc hool was at a premium. Bill relays: I was almost thrown out of there during the big polio outbreak in 1954. That place was loaded. We had iron lungs all over the place. They brought more polios into there; it was unbelievable. A lot of them that were there had to leave. I was almost one of them. They just didn t have the room. I was in vocation then. They wanted to watch me. And I was stay ing there part of the summer after the school year to put more time into learning watch repair. Bills tenure at the Massachusetts Hospital School may have been partly attributable to his cleverness:
121 Of course I got campused [restricted to campus] a lot. But I pretty much got around that any time I wanted. When kids were campused, when they wanted to go out, theyd try to sneak out through the back and over the fence and stuff like that. And theyd get caught. What I did is, I went into the front office where the telephone and all that stuff is, where the board is, and Id call a taxi, walk out the front door and get in the taxi. And nobody questioned it. The othe rs would get caught all the time and Id just walk out. Vocation and Employment Watch repair is not the first vocation that a new acquaintance would associate with Bill, mainly because Bills hands are us ually held in a tight table-top position due to the surgery he underwent at an early age. And yet, watch repair is the exact vocation Bill chose to pursue. Bill explains: Its kind of ironic, working in wa tch repair with these hands, handicapped with cerebral palsy and surgery, and yet I can do watch repair. Not for assembly line or speed, but they work real well for the delicate stuff. I can work with this hand under a microscope using tweezers on th e tiniest thing and I hold things with these fingers. I made up devices that hold stuff. I made up a thing that when youre working under a microscope and youve got two things that you have to solder together and neither one is bigger th an a hair and youre reaching for your
122 soldering iron and youre trying to put th e soldering iron back into the stupid holderthats a real deterrent to what youre doi ng. So I took the case out and just took a piece of metal and put a thick round magnet on it. Then I could just rip the soldering iron over ther e and hit the magnet. I di dnt have to screw around trying to fit the soldering iron into the case; I just threw it over there. On the small vices that I used, I replaced the bar handl e tightener with a thumbwheel tightener and that worked great. Bills assessment about being disabled doe snt seem to apply to himself. Bill stated that, your choices when youre disabled and handling things are limited a lot more than when you are not disabled. Youve got pa rameters when youre disabled that really tie you in. It appears that Bill set out to deliberately overcome the parameters that limited him as a person with a disability. Pe rhaps that is because Bill perceived his mental abilities as a major strength and cons idered them as an avenue for success when he was very young. That perception persiste d when Bill pursued employment after graduating from the Massachusetts Hospital School. Bill explains: As far as getting a job, the more handicapped you are, the harder it is getting a job. It boils down to brainpow er, if you havent got that, theres no way youre going to get a job. Its still the same, the discrimi nation is still there; its the same as it has always been. The wo rse you are, the less youre going to be wanted. Thats it. The big fallacy of 504 or ADA and all that stuff is that it claims it has made a difference in employment and it ha snt. Its made a difference in the
123 education and its made a difference in accessibility. The numbers on employment are exactly the same as they were before ADA and 504. Everything else has changedaccessibility and education; but the employment has not. Its still around 50% among disabled. According to Bill, problems arise once you are employed as an individual with a disability and you lose employment: The real difficulty if youre hand icapped and youre getting any kind of help like from Developmental Services or Medicaid and you get a job and then lose the job, is get ting that help back. You have a harder time getting that help back after you lose it if you are unempl oyed again. So you think about that a lot before you go out and look for a job. Becau se then trying to get what you had before is very difficult. Civil Rights and Advocacy Bill and I discussed the comparison betw een the civil rights movement and the disability rights movement. As with every other topic we discussed, Bill had a definite opinion and perspective: I think that handicapped are the la st minority that are discriminated against. We are the last ones. The blacks always bitched that they had to drink from separate fountains. Well we couldn t drink from any damn fountain. They had to sit in the back of the bus. We couldnt get on the damn bus. So if you go
124 along those lines, we are the most discrimi nated against than any of them thats lasted the longest. The discrimination that Bill feels may be partly due to terminology associated with individuals with disabilities. Everyone has particular terminology and attitudes with which they take exception. Bill is no different: Another thing thats always bugged me is being called crippled I was never a crippled child I was always able to do someth ing. A car is crippled at the side of the road and it wont move. If its handicapped, youve got a couple of bugs in it, but youre still moving. I got pissed off one time with The Rehabilitation Center when they said the handicapped there were happy, they never complain, they were always smiling. I called them and said thats a bunch of crap. You dont think I want to go out and swim and ski and do all that st uff, even if I havent done it before? And they said, well, you ve never done it before, ot hers are handicapped after theyre 20 or 30; theyve done it. I don t know about that. If someone came up to me and said that, Id say, well at least you had 20 or 30 years. Dumb. I havent had any of it. Although Ive tried most of it. Tried going off a ski jump; almost got killed. Used my crutches as ski poles; didnt work. First-hand knowledge of di sabilities has made Bill a strong advocate within the disability movement. He has become so mewhat disenchanted over the years: Over the years I got out of advo cacy because I found th at you couldnt tell the difference between the handicapped and the county or state department that
125 you were trying to change. They had become one. When I went in to do something Id get shot down as much by the handicapped as by the department. So I said to hell with you all; I dont wa nt anything more to do with it. When you cant tell the difference between the ha ndicapped and what youre fighting, its time to get out. Handicapped arent always the be st for the handicapped either, you know, they can be jerks just like everybody else. There are good ones and bad ones. I know some of the biggest jerks in the world who ar e in wheelchairs and are handicapped. You are your own advo cate. Your best advocate is you. If the handicapped community isnt mo re together then that will make us go backwards. In Florida, thats the way it is. One group fights another group and they get nowhere. Politics According to Bill, programs for people with disabilities are tied directly to politics: The liberals create all the programs a nd the conservatives take it all away. So we see cycles when the Liberals are in power, programs expand. When the Republicans take over, the programs are cut back. You woul dnt have social security or ADA w ithout Liberals. With four more years of Republicans, youre going to see a lot of that stuff disappear. The thing that I have (Devel opmental Services, part of Health and
126 Rehabilitative Services) is now being pr ivatized under Jeb Bush. You might as well consider that gone. Okay, so whats that tell you? Theres nothing to it. Youre not going to get anything. People that are handicapped are not going to get anything. The Future Bill has grave economic and social concerns for the future as a person with a disability. Bill thinks, Its harder. Its almost impossible now. I dont know whats going to happen, which is why we try to go where we want to go and do what we want to do, next week I may not be able to move. Self Description Like his wife Ellen, Bill describes himsel f as fiercely pro-independent as far as peoples rights go, especially di sabled. Bill sees himself as helpful to other people. Bill likes to have fierce discussion or debate s, and he likes perfection. According to Bill, these four phrases best describe him. Th e fifth descriptive phrase that Bill used in the Self Data Survey reflects his sardonic humor. Bill says that he is a helluva nice guy. It is easy to observe Bills humor on life as he traced his life history, describing his exploits as a teenager in finding ways to get off campus from the hospital school where he lived, Again like Ellen, Bill chose his daughter as the person who knows him best. Bill feels that his daughter would describe him as, independent, as self-sufficient as
127 possible, stubborn, grouchy, and a nice pe rson. The qualities that Bill sees in himself are reflected in how he perceives others see him. Bill effectively describes how he fits into his chosen environment. Reflections and Response to Bill I have known Bill for over 25 years. I know him to be bitingly caustic, but poignantly accurate about issues and interests of individuals with physical impairments. I found Bill to be directly eloquent. At this stage of the study, I was forced to confront the fact that while I thought I was empathetic and understanding of what it is like to be an indi vidual with a physical impairment, I was deluding myself. Bill gave me indications that I had been pretentious about what it is like to be a person with a disability when he talked about adopting their daughter. Like Bill and Ellen, my wife and I ha d adopted. But our side of the story was what Bill had talked about, When we went to the adoption agency, they asked me all the questions, what kind do you want ? Well, blond, blue-eyed, all those things. For Ellen and Bill, the rejoinder from the adoption agen cy was well, how are you going to do that in a wheelchair? For my wife and me, the re sponse was, Would you be able to receive the baby in ten months? Bill further emphasized my delusion of understanding what it is like to be an individual with a physical impairment. We discussed our options for old age. Bill: its like I told her; Im not going into a nursing home.
128 Pete: yeah, but realistic ally what will you do? Bill: yeah, realistically. Pete: at some point, Ill be too infirmed and the only place that can take care of me is in a nursing home. Bill: thats right. Do you have insuranc e? Will you have insurance for it or will you have Medicaid? Will you go into a good nursing home in a retirement situation or will you go in a dump? It make s a hell of a difference. Ill be in a dump. I dont want to be in a dump. Pete: so what happens when you cant physically get up anymore? Bill: I dont know. Pete: will they send in caregivers? Bill: down here, no. Pete: so how are you going to stay here if you cant get out of bed to take care of bodily functions? Bill: I told you. I just told you. Pete: you gonna die? Bill: yeah Pete: is this going to be self-administered? Bill: sure. Pete: and how does E llen feel about that? Bill: I dont know. She didnt say too much about it. Ive told her over and over that Im not going into a nursing home. Pete: I can understand that. Even th e nice nursing homes dont appeal to
129 me, and we have plenty of nice ones down here. Bill: yeah, for money. You do not have plenty of nice ones for me. In fact, you dont have any nice ones for me. Pete: it requires money. Bill: there was talk about that up nort hthat we were going to start our own (nursing home). Because we could get the money for it up there and we were going to start our own nursing home, run by us (the disabled). This would give us a lot better control. We just didnt ge t together. People moved. And it depends on how its run as to how good it is. I was again confronted by my tendenc y to assign stereotypi cal attributes of nobility to people with disabilitie s. Just as I had assigned nobl e characteristics to Theresa, I wanted to assign those same characteristics to a program that wa s run by individuals with impairments. I made an assumpti on that a nursing home run by people with impairments would automatically be better than one run by people who are able-bodied. Bill had corrected my misconception. One of my favorite sayings is, I reserve the right to dislike anyone I choose. Just because you happen to be in a wheelchair, doesnt mean you cant be a jerk. My interpretation of that is that I am forced to look at the person and not the device surrounding or encompassing the person. Perhaps I am not as egalitarian as I would like to think I am When the time comes that the wheelchair or assistive technology device does not re gister when I form an opinion of someone, then I will be that much clos er to equality. That has happened only
130 once. I remember working for Linda Simpson, whose interpersonal and management skills were exemplary. It wa snt until years la ter when someone asked me to describe her that I discov ered that I included a wheelchair in the description of her. Up until that point, I had never thought of Linda as being in a wheelchair. Bill, more than the other three contribu tors, has forced me to draw a parallel between my self-interpreted liberalism about individuals wi th physical impairments and how I felt about being a pediat ric physical therapist worki ng with parents who had kids with disabilities. I considered myself to be very caring, understanding and empathetic of parents who had a child with a disability. Wh en I would include a home program as part of the physical therapy treatment for their child, I would try to be considerate of the time and effort it took to complete the home program. I would try to include the home program into regular day activities, such as doing range of motion for an affected arm or leg as part of the bathing activity. Or I would try to make a game out of the home program so that it could be included in a daily play activity. It was not until after I had babies of my own that I came close to understa nding what I was asking of the parents of a child with a disability. For many of the pa rents, getting through a 24 hour day was all they could manage; forget about the luxury of a play time. While I am not saying that I would ha ve to experience a permanent physical impairment to truly understand what it is lik e to be an individual with a physical impairment, although a case can be made for that; I am saying that Bill would be the same caustic, acerbic outspoken individual he is regardless of his physical attributes. Its
131 because Bill and I share such similar viewpoints on so many topics that I can so easily identify with him. Through that projected identi ty, Bill has helped me feel what it is like to be him. Perhaps our mutually mellowing age has contributed to the increase in understanding on my part. Regardless, I have a better understanding of what it is like to be an individual with a physical impairment because of Bill. But, more importantly, I better understand that I will never completely know what it is like to be an individual with a physical impairment, I can only appr oximate that experien ce through propinquity and juxtaposition.
132 Chapter 8 SUMMATIVE RESPONSES In this chapter I review the area of inte rest for each participant that appears to have been the most influentia l in their respective creation of self. In so doing, I address the first research question, How do persons with physical impairments understand and give meaning to their lived experience? I in clude the parameters of interest for the studyfamily life, culture /race/ethnicity, gender, age, a nd assistive technology. I include additional areas of interest th at contribute to the formation of self that arose from each participants life history. I also relate the re sponses to the research questions to both the literature and the disability movement. I then address the second research qu estion of how individuals with congenital physical impairments understand and give meani ng to their lives compared to individuals with acquired physical impairments. I offer observations of how and why the differentiation between individua ls with congenital physical impairments and those with acquired physical impairments are maintaine d. As the fifth participant in this study, I describe the effect and impact the study has made on me. I conclude with implications and recommendations for future study regardi ng individuals with physical impairments.
133 Understanding and Meaning to the Lived Experience Family Life How does giving meaning to lived expe rience differ from person to person for individuals with physical impairments? The para meters of interest th at contributed to the formation of self had different import for each participant in the study. Of the five areas of interestage, gender, race/c ulture/ethnicity, assistive tech nology and family life, Ellen demonstrates through her life history that family life is a primary force in her life. (My parents) were good when I had my accident wh en I was 15. My sister came home on emergency leave, and my brother came, they all came. And they were there with me. And my brother Bill came back. My uncle, who had died before I was born, was born with infantile paralysis and muscular dystrophy. And he died by age 17. My father used to tell us about him. They used to put him in a wagon and take him every place with them. My father was used to people with disabilitie s. (My father) did whatever I wanted and needed to have done. My mother came in to visit one time, and she could see that my legs were going to fall and she knew that I was worried about my le gs falling out, so she tried to grab my legs to hold them. Ellen has lived directly with, or geographically close, to her extended family her whole life. When she married Bill they lived with her parents for two years and then bought a house two blocks away. When she moved to California, it was near her husbands brother and his wife. They moved back to Massachusetts a short while later to be near family. When they finally made the big move to Florida, they moved within a mile and a half of Ellens grandparent s and close to her aunt and uncle.
134 Presently Ellen and her husband have an extended family in their own home. Ellens adopted daughter and her husband and their daughter live t ogether in a three bedroom house. Ellen is very protective of her family: I couldnt dream of letting my kids walk because of whats out there toda y. I walk Donna (Ellens granddaughter) to the bus stop because of whats around. While family life plays a large part in defining who Ellen is, family life was also important in the formative years of Mikes life: Wouldn't have changed a thing when I was a kid, I had a hell of a good time. I di d. I had a good time when I was a kid. I had a lot of fun. I wanna go back and do that all over again. Although Mike is not married, family is still important to him. He takes his role as uncle very seriously and remains close to his mother and father. While family life does not appear to be the dominating factor in determining who Mike is, it is di fficult to pin down one area that is the most influential in the defining of self for Mi ke, although being handica pped is certainly one area that receives a lot of emphasis from Mi ke. Mike relays, The best place for a handicapped person to be is in Canada, (becau se of socialized medicine). And even though things have gotten better for handi capped people; who gets stuck holding the bag?The people in wheelchairs again. Mike appears to relate to the concept of social discrimination (Barton, 1996; Oliver, 1996a). Mi kes response to the felt discrimination is to create an equal living environment: Take this building for examplethis is a building filled with handicapped people. Okay? Once again, segregated. I never, ever, would have built the building like this. It's a very good idea. It gave some people who need a home, a
135 home. And I'm not against that, that's a very good thing. But why did you do it this way? Why can't you just build a great big apartment complex and have some of the apartments handicapped and some of them not? Why do you have to segregate the people? That's my whole pointdon't segregate the people, and you won't have this problem. At college I wasn 't segregated; I rarely had the problem. You don't segregate, you don't have the problem. Theresas family life, while not the domi nating influence in the definition of self, is still a major part of her life. She was ra ised by her grandmother and respects her, but wanted to move out after her accident so sh e could raise my children the way I wanted to and give them the values that I thought were important. Theresa sees her role as mother to her children not as a handica pped woman that cant do everything that a normal mother could do, but as a role mode l for her children. It is important to Theresa that she and her 15 year old da ughter are best of friends so we can talk about anything, including sex. She doesnt need to get pregna nt when she is 15 like I did. I lost my virginity even before I knew what it was. She wants more for her kids than she has. They dont need to just see me get a check every month, not work for it, and not earn it. Thats why I workto be a role model for them. Just as Priestley (2003) expanded upon in his life course approach to disability, Theresa manages to intertwine many issues surrounding disability in to a common thread of conversation. Priestley talks about th e commonality of lifes stages between individuals with impairments and individuals without impairments. Theresa discusses racial issues and disability while referencing gender and fa mily life issues. Listening to
136 Theresa is like listening to scholarly work s on disability by Oliver (1996b), Marks (1999), or Barton (1996), but with the simple eloquence of a stor y told by the person living the life of an indi vidual with a disability: I think it's something totally as a black community that were not exposed to. So you don't know how to embrace a person with a disability; so you are totally caught off guard. Youre totally caught off guard, you don't know what to expect. I think when it comes to the white community, there's a different embracing there. There's a different push there. Like, for instance, a kid that is bo rn with a disability, you have a different motivation for getting that child to be as normal as possible, when theyre born with it. They want them to be normal, they want them to be accepted, they want to let them know that they can do everythi ng that everybody else can do, they just do it differently. I think that goes whether its black or white, as far as if its a congenital disability. But when it's an acquired disability, youre fighting a different battle because especially when it comes to age differencesat what age were they hurt? At what age did they get the disability? What are their support systems going to be like? Do they have a support system? A totally different fight. In the black community, that support sy stem may be absolutely, positively zero. Whereas in the white community you have that parent that financially or socially will stick by you to the end. So, it is tota lly different how its done and the way its done (in the black community as compared to the white community).
137 Thats just what we we re taught all our life. Its just been driven into our heads that people want to make women th e lesser equal, but we have to make ourselves the one thats more valuable. A nd we get that driven into our heads and we get this attitude about it even. Theresa further intertwines the disc ussion by making the comparison between the civil rights movement and the disability movement: I think its just something thats been driven into our heads for so long. You see it in school where they talk a bout slavery where the black woman was treated. They want to fight for this because somebody fought for this, and somebody fought for that. But at the same ti me, we, as individuals have to realize that we have to fight our own battles. We cant go off and expect that somebody else fought the battle for us 50 or 60 y ears ago. We cant want something because of something that somebody else did. N o, you have to make your own. You have to stand on your own feet; you cant sta nd on somebody elses fight. I deserve this because Harriet Stowe had the U nderground Railroad. No, I dont. If I deserve it, its because of what Ive done because of what Ive accomplished, or because of what Ive put forth. Not because of what Martin Luther King did, or not because of what this person did. They thought that they gave me the right and they gave me the opportunity to do it, but if I dont stand on my own and go forth with it, I dont have a right to it. Thats just my persona l take on it, the way that I look at it.
138 Theresa operationalizes the concept of individual responsibility combined with unity effort that Priestley (2003) describes wh en he calls for a forward movement for the individual rights of the disabl ed without risking the progress that has been made for the disabled as a unified front. Bills family appears more important in de fining who he is in later life than in his formative years. What Bill didnt say a bout his family spoke volumes. Bill became a ward of the state at 12 when he was sent to live in a residen tial hospital school in Massachusetts. According to Bill, the hospital school was where I became thats where things started happening. I moved out of seclusion into the daylight. Bills formative years were spent in a residential hospital school. As a result, he has strong opinions about education and the facility he attended: The Massachusetts Hospital School was the only one of its kind in the world. Massachusetts is the only school th at did what it did in the world. It combines medical with education. Any kid that graduated from the Massachusetts Hospital School had no problem getting into college. They were automatically accepted. Thats how good their record was. It was fantastic. I dont think mainstreaming is fo r everyone. There should be options. Everybody cannot be taught in a mainstreamed school, I dont care what they say. Today, Bill is the head of the household of an extended family that includes three generations. He feels responsible as the patr iarch of the family. It is obvious in his carriage and demeanor about his house that he deserves the respect that his family accords him.
139 Race/Culture/Ethnicity Of the four participants in this study, Theresa speak s the most eloquently about race/culture/diversity and disability. She feel s strongly about her ra ce and culture and her role in it. Theresas role as a black woman in a matriarchal society is closely tied to her family life: I think its a lot like my grandmot her. She didnt want to have a man over her children because if something ha ppened where he did something wrong, it would be him out the door. I just rememb er her putting her life on hold a lot for us, for her children, for her grandchildren; sh e just wanted to raise the children in her household. And I think as far as in the black community, when it comes to a black woman in a household, we take on th is attitude that if we dont do it, it wont get done. Theresa thinks that in the black commun ity there is more of a tendency to hide a person with a disability or to blame the mother for the childs handicapping condition: I have a friend whose son is 16 now. He was born with hydrocephalushe had water on the brain. But because she was afraid of what her friends would think and all kinds of stuff, she neve r had him tested. She never sought out the help he needed until he was older, until he was three and couldnt sit up by himself. But she wouldnt admit it to herself. A lot of the kids that are born with (disabilities) are probably be ing raised by grandparents. Not so in the white community. Theresa f eels that there is a different embracing, a different push in the white community. A lot has to do with a higher socioeconomic
140 status in the white community compared to the black community. Theresa relays that in the white community, they have th e money to get the help they need; so they seek it out. Its not as much the mothers fault if the child is handicapped. Those kids are raised mainly by their parents, not their grandparent s. Its different in the white community compared to the black community for the disabl ed. As Theresa says, Im the first black woman I have known in a wheelchair. Mike relays that he has no perspectiv e on race and disability. We were just kids; we didn't pay any attention to that kind of st uff. We were just kids, having a good time. Who was faster in their wheelchair, that's a ll we thought about. As for as racism, I don't know. Although Mike went to school with ki ds who had physical impairments and were from differing cultural backgr ounds, his current friends are all of European descent. Previous to attending the hospital school Bill had very little interaction with differing cultures when he was growing up: I didnt have that many contacts with blacks. I come from a town where the only time that you saw a black was wh en the summer people came with their chauffeurs and maids. Gloucester wasnt black, Rockefeller was snowy white. I dont think there was a black in the whole town. Most of the No rtheast corridor all the way up to New Hampshire was white. The only place there were blacks was in the big cities. At that age we never went to the big city. I asked Bill if there were any black kids in the hospital schoo l that he attended. Bill: yeah, why? Pete: I was just wondering what discrimination was like back then.
141 Bill: this was Massachusetts. Pete: whats that mean? More liberal? Bill: yeah. Pete: so theres no bi gotry in Massachusetts? Bill: yeah, there probably is, but bigotry is every place. But I think its lesser there. Even from this brief interlude there are indications that race/culture/ethnicity do not play a significant role in id entity formation for Bill. Like Mike and me, Bill is part of the dominating social classwhite and male, an d, as such, is not forced to deal with prejudicial issues based on race. That doesn t prevent Bill from having an opinion on racial issues: Yeah, well I mean a lot of blacks bring it on themselves. I think Bill Cosby got it right on the nosedumb a nd black, themselves, the way they talk. There is no reason in this day and age for people that are black to talk stupid. And he got in all kinds of trou ble for that. Well, theyre just trying to be white. Thats got nothing to do with it, he says. He sa ys talk, just talk. Theres no reason why you people cant talk good English. Speakin in this two-bit black. Why do they talk that way? Did you hear the big c ontroversy about him a nd everything? Hes really pissed off at the blacks and the wa y they handle themselves. He thinks that they dumb down. And other blacks that see blacks moving up and doing the same thing, they call them whiting out. He said its terrible from both ends. Youre
142 dumbing down and whiting up. What th e hell chance you got ? You bring it on yourselves. Like Bill, Ellen grew up in the Northeast a nd had very little interaction with other kids from varying backgrounds. She only reme mbers one student at the hospital school who was black and she never went out with him; we were just friends. Ellen implies through her life history that race has no particular bearing on disa bility, either as having a disability, or how people view an individua l with a disability. But then, Ellen would obviously rather be white. Theyre still ha ving a lot of problems with blacks and we were fortunate to be born white. The only participant in the study who had an acknowledged position on culture/r ace/ethnicity and disability was Theresa, who defines herself as being part of the black community. Gender What starts out as a gender issue becomes a personal defining position for Theresa: I think so far as black woman in a wheelchair, men, black men, white men, I think its men period; they have a cer tain stereotype or persona that they're looking for. And as a man, most men see the wheelchair and the girl in the wheelchair. They don't see the woman as a person. Which is not all men. But I tend to push men away. Which is probabl y a bad thing, but my whole thing is it's so funny because there's this one guy th at wanted to date me before and the whole time that he was talking to me, I was saying to myself what's wrong with
143 you that you want to date a person in a wh eelchair? It wasn't that he saw things so differently than me, it was that, whats wrong with you, are you alcoholic, do you have a drug problem? Do you think that I' m just this lonely person that maybe you could You see me going to work ever y day so maybe I got an easy ride hereI can make her think I love her type thing. You know there are so many guards up for me, when it comes to relationships. But man, I'm going to have to break them down so I can st art meeting people. I mean, there are just so many people that are totally in the dark. For Theresa, gender and disability are tied to race and disability: I think white men accept all aspects of disabilities, as far as urinating on themselves, as far as being incontinent of bowels, all that kind of stuff. Black menNah. To be with a woman that some body else has to come in and help in the morning, get up to bathe, and so fort h or even if the man had to get up a couple of hours early to help his wife a nd get her up in the morningI just don't see a black man doing that. There's probably on e out there, but he's not in Florida. I could be totally wrong; I ma y just not have ever met that man that has that side of him where it's unmanly to love some one like that. But I just haven't been positioned with that person. And when it come s to dating, I'm not really open with the total aspect of my disability either. B ecause, to me, that's a very guarded issue, it's very personal. But I think a black woman will take on the disability of the black man easier. She'll be more able to take car e of that man, and clean his butt and do all
144 the kinds of things that he cant do. If you look at it, you're better off being disabled as a man to find a healthy wo man. A woman will help a man with that kind of thing, whereas a man wouldnt help a woman do that. Ellen, on the other hand, felt a disparity of privileges awarded to students at the hospital school based on gender: They got the privilege to smoke and females werent allowed to. Even though I had my fathers permission, I sti ll wasnt allowed to smoke. It turned into a big issue. I was president of the senior class and I met with the superintendent of the hospital school at breakfast and I wanted to smoke and I brought it up. And the boys just wanted me to be quiet because they didnt want to lose the privilege. But I wouldnt. We never were allowed to smoke the whole time I was there. It was really unfair. Because Ellen is experienced and becau se we have known each other for a long time, I felt I could ask her direct ly about gender a nd disability. Pete: do females look on disability differen tly than males? Do they get services differently? Are they treated differently? Is there a gender issue with disabilities? Ellen equated her response with the services that she and her husband, Bill, respectively receive secondary to their disabilities: I dont know. Because Bill and I go through different agencies for different things. And I have to say, except for a few times up in Massachusetts when I had problems with Vocational Reha bilitation. Other than that, Ive never had problems with the ag encies I deal with.
145 When asked if he thought females looked at disability differently than males, Mikes response was, I dont know. Ive tried to figure that out. Age Ellen: Id like to be young. Who wo uldnt? There are too many problems. You have enough problems being disabled and th en it adds to it because of age. But ours are added to more because were disabled. Mike: being older is a disa bility, in and of itself. No w combine that with being disabled, then what happens? When I was a kid, I really didn't look at it differently, I didn't really see it differently, but it was different. You know when you're a kid, you're a kid. All you think about is, what's in my lunchbox, you know, why can't I go outside and play? But now I think of things like I'm still on my dad's insurance for very practical reasons. Cause way back whe n, my dad and I discussed it, and we decided unless I got really, r eally lucky and found the right job with really, really good insurance; there was no way that I wa s ever going to be able to get on somebodys insurance policy, cause theyd ne ver insure me, in spite of the fact that I'm healthy as a horse. So I look at things from that perspect ive. I always have to make sure that I have insurance. Do I have enough money coming in to cover myself if I do something to myself and I get laid up? Be cause the odds are more in my favor that
146 I'm gonna hurt myself and do something and get laid up than the average guy. Even though, technically, they're not. That's the way it's looked at in the world. So I have to do the same thing. Getting a job is tough. That's why I work for myself. Cause it doesn't matter how smart you are, they're not looki ng up here (points to head). And when I was a kid, I figured, all I gotta do is make sure I'm smart. Because no matter what happens, I don't have legs anyway, I can use my head to get me through. Well that kind of logic works great when you're a kid. Doesn't really apply to the way things work out in real life. Theresas perspective on age and disability is from the viewpoint of a person who acquired a disability later on in life: If you are a teenager and get disabi lity, you'll be motivated differently. It strictly depends on the person. Your mo tivation motivates the people around you that want to help you. An adult who has an acquired disability, cant be pushed away as easily. Take me as an exampleas a 32-year-old woman, if I had a very nasty attitude, always nega tive, I think a therapist w ould give up and say, well I'm going to teach you what Im going to teach you, and then I'm going to go home. Versus, Im that 32year-old woman who comes in there with an attitude of Ive gotta do this. They're more mo tivated to help you. They're going to help you; they're going to work harder for you because you are putting forth to be better. Versus that teenager who is goi ng to be pushed from day one, cause he's got his whole life ahead of him and they 're going to push him the hardest. Until
147 they just totally shut down on themselves out of rebellion. And then when they don't want to do anything, the therapist is going to say, Okay, I'll leave them here for their parents. Bill thinks his marketable skills have diminished as a result of age: Well, the worse you are physically, the less youre going to be wanted. Thats it. I could never get back into what I was doing before. Its harder now than it was before because Im older and am able to do even less physically now than I was before. And accessing stuff is ge tting harder too. Its harder. Its almost impossible now. I dont know whats going to happen. I cant get a wheelchair. Ellen cant get a wheelch air. VocRehab shot her down too. The only way you can get a wheelchair is if we go out and work. Assistive Technology Theresa best describes how she feels a bout assistive technol ogy and disability: Dont judge me because you see this hardwa re attached to me. Its the type of thing where the wheelchair doesnt define who I am; I define the wheelchair. Its not the oh, you see the wheelchair right there with the girl in it ? Its the girl in the wheelchair. Im not just the wheelchair Im the girl sitting in the wheelchair. The wheelchair is not who I am. Im the pers on in it. Its the same as look at that person in that car. You dont want me to judge you by the car you drivedont judge me by the wheelchair; its really one and the same.
148 Although Mike, Bill and Ellen are equally dependent on assistive technology for mobility, none acknowledge assistive technology as contributing to how each thinks of himself or herself. Mikes perspective on assis tive technology and disability is related to whether the person has an acquired or a congeni tal disability. Its all according to what you need and if youre smart enough to use it. Its not so much a matter of who uses assistive technology more, or who knows more about it; its a matter of who can afford it. So from that standpoint, I guess guys with acquired handicaps use it more because they have better access to funding. Congenital Versus Acquired According to Mike, who has a congenita l disability, individuals with acquired disabilities have it easier: People feel sorry for people in an acc ident in a different way than they feel sorry for guys like me. I, as the victim (of a handicapping condition), become the accused; I am somehow responsible for my handicapping condition. But hes not; hes a victim of circumstances. And hes taught things that we didnt know. The first thing they taught him in a reha b hospital was how to deal with his limitationshow to manage, how to handl e the wheelchair, up-and-down. They never taught us that, ever. And its easier for him to get financ ial aid than it is for guys like us. Because they will spend as much money as needed, even supplanting his income, to rehabilitate him to get him back in the work force. At the same time, they wont
149 spend 1/20th of that amount to habilitate us to get us into the work force, unless its for a job that theyve pre-determin ed thats all we can do because were gimps. Mike recognizes the anger that is asso ciated with having an acquired disability, he was angry because he couldn't do what he was doing before. It doesn't mean that he was angry about being disabled, he was just angry because he couldn't do what he was able to do before. Mike feels that it is partly due to having two different frameworks, because you have two different realities that you're looking at, and one is crashing into the other. Ellen, who also has an acquired disabilit y, thinks that a lot of people that were born with disabilities didnt have much knowledge of the outside world. I think that people that were born with disa bilities were certainly a lot di fferent because they were in institutions most of their lives and never sa w the difference until they got out of there. However, individuals with ac quired disabilities may not fare that much better, according to Ellen. People that are newly disabled dont know anything. People that are newly handicapped or older people that get ha ndicapped dont know anyt hing or you cant get them to do anything. You see some stupid thi ngs that they do and you say, Why? When its out there and you go looking for it, and you ask for it; you dont just go and live without it without trying to get some kind of help or asking someone about it. Whether one has an acquired or congenital disabilit y, its knowledge and what you do with it. Before Theresa acquired her disability, she had occasion to compare two students with disabilities at her school One student had a congenital disability, the other had an
150 acquired disability. Theresa relates, as far as the one that was acquiredI think he was embraced by more people just because of the fact that people knew him. But you have to look at that person who is born with that disability too. How far can they push him? How much can he do? Bill believes that discrimination is still out there. Its not based as much on whether the person has an acquired versus a congenital disability as much as it depends on the persons mental abilities and how moto rically limited he or she is. Yeah, its strictly brainpower. Its still the same. The discrimination is the same as its always been. The worse you are physically, the less youre wanted. Bill, who has a congenital disability, and Ellen, his wife, who has an acquired disability, applied for jobs at the same place of employment. Bill thought Ellen had a distinct advantage in getting hired be cause, she had two good hands, and she looked less handicapped. But Bill recognizes that a lot of people that ge t hurt after theyre able-bodied have a harder time accepting it. Self Description Each of the four participants describe d themselves and how they fit in their environments. The commonalties among the four participants are intriguing. Each is strongly independent and has developed into a strong advocate for others. Mike, Ellen, and Bill display a cynical sense of humor that helps keep some of their perceived inequities like discrimination for employing in dividuals with physical impairments in a workable perspective. Theresas humor is much more subtle.
151 When Theresa described five phrases of how a person who knew her best would describe her, she responded with, girl, better you than me and aint nothing wrong with her. Theresa feels that people dont al ways think she really is disabled, and she deals with that through humor. Overall, the commonalities that I perceived in the five participants (the researcher is included as the fifth participant) are: an intelligence reflected in a quick wit, which was often cynical; a sense of humor that is used to keep untoward perceptions in a balanced perspective; a fierce sense of independence; a dedication and commitment to cause; and a stubbornness that preferred to be perceived as perseverance. Medical and Social Model Perhaps the age in which individuals gr ow up has something to do with how they define themselves. Ellen and Bill are 62 and 63. The fact that they met in a hospital school and both underwent extensive surgeries and hospitalizations certainly contributes to their definition of self in terms of the medical model of di sability. A good part of each of their life histories is deta iled descriptions of the trauma each underwent in an effort to maximize their function. Ellen describes herself as a para and Bill remembers he was a spastic when he was a kid. Like Bill, Mike was born with cerebral pa lsy, but 30 years later. He has named his company P.M.I.G., which is gimp backward s. This social term appears to be a reflection of the period in which Mike gr ew up. The disability movement was well underway when Mike was born (Fleischer & Zames, 2001) and there was a transition of
152 moving from the medical model of disabili ty to the social model (Oliver, 1996a; Tursumani, 2003). Social terms within the disability mo vement developed during this transition period. Both Theresa and Mike refer to able -bodied individuals as TABs (Temporarily Able Bodied). Theresa explains, They are a person within disability; they are a person first. They have just acquired something that you haven't acquired yet. Bill finds the derogatory term spas in todays teenage vernacular to be offensive. Just as many schoolyard names such as idiot imbecile and moron had their beginnings as medical designations (Linneman, 2001; Trent, 1994), so t oo with designations fo r individuals with physical impairments (Barnes, 1996; Holmes, 2001). The medical terms of cripple and spastic found in Bill and Ellens day have given way to defining handica p and disability in social terms. Bill describes what crippled means: I was always able to do something. A car is crippled at the side of the road and it wont move. If its handicapped, youve still got a couple of bugs in it, but youre still moving. Theresa explains: I think that when people talk about being handicapped, and I always refer to myself as being disabled; I'm not handicapped, I'm disabled. Disabled is a compound worddis is a prefix of able. I no longer am able to do what I used to do; I'm disabled. I think of a person w ho is handicapped as being born with it. Theyre handicapped; this is something th eyve always had, and they're trying to
153 get past; theyre handica pped. You got it from God. When you get a handicap, it's something you have; you try to get past th at handicap, you have to deal with it and go on. Individual Model Theresa continues, I ju st think if people stop looking at a disabled person as a handicapped person, if you stop defining people by the situation, and define the person first, all of us would be better off. As a disabled person, don't try to define us, let us evolve, let us become who we want to be, le t us be ourselves first. When you define a person with a disability, you put a limitation on them. Everybodys not going to be the same just because they are in a wheelcha ir. You cant expect every person in a wheelchair to have the same abilities as me, to have the same drives as me, to have the same attitude or personality as me. Mike relays striving to ac hieve recognition as an indivi dual at an early age. He remembers in junior high school what it was lik e to be talked about as if he was not even there, being forced to a position of limina lity as described by Murphy (1988). When I was with somebody, occasionally, some guy wo uld come up and say, yeah, whats his name? I'd look right at him and go, Oh God, I don't know. You wanna know my name? Ask me, for Gods sake. No, theyd talk to somebody else. In college, Mike was accepted as an individual. Not, oh there's the guy in the wheelchair, none of that crap. It's just, Mike And Mike happens to be in the wheelchair; if you cant deal with it, then too bad, because that's the way it is.
154 Priestley (2003) discusses the social model of disabilit y, but puts that model in the perspective of the individual firs t. Each of the four participan ts in the study said, in many different ways, and in many different forms, look at me as an individual, dont pass judgment on me based on how I look or on the hard ware that is attached to me; judge me by who I am and what I presen t to you. I thought that wa s what I was doing when I started this study. I now know that I am just beginning to understand wh at it is like to be Mike, what it is like to be Ther esa, what it is like to be Elle n, and what it is like to be Bill. Lessons Learned I have incorporated my responses and r eactions directly and indirectly throughout the study. I defer to Mike, Theresa, Bill and El len on the perceptions of disability related to age, gender, race/culture/et hnicity, family life, and assis tive technology. Therefore, I include in this section only thoughts and responses that have not heretofore been mentioned. Mikes concept of integrated comm unity housing struck a cord with me. Egalitarian housing is certainl y not a new concept, but it took Mikes perspective and description for the concept to develop into a realistic construct for me. Bill later relayed that Massachusetts had such a working model in operation. Although I intellectually accepted that Florida was at the dismal end of providing services to individuals with disabilities, it took Mike and Bill to make me feel what it is like to be at the bottom of the social food chain.
155 Ellens graphic descriptions of living the medical model of disability made me appreciate how the treatment of individuals with physical impairments may not have evolved into the social model of disability as I would like to believe. Comparing Ellens description of living the medical model in the 1950s with Sacks (1998) recounting of his experience of being physically impaired in the 1990s drew many similarities As a physician and advocate for individuals with di sabilities, Sacks found himself at the mercy of the medical community for several months following an accident th at left him with a temporary physical disability. Sacks descriptio n of that account belies a social model of disability. Quite the contrar y, Sacks recounts feeling helple ss and dependent because of his medical condition and diagnosis. Bill reinforced the experience of the medical model as he unfolded his life history. I am chagrined to learn that Bill f eels that the employment rate for individuals with physical impairments is no better now than it was before Section 504 and ADA were enacted. Bill believes that only 50% of indivi duals with disabilities who are eligible for employment are, in fact, employed. Bill, Ellen Mike, and Theresa helped me understand that there is a difference between individuals with congenital physic al impairments and those who acquire physical impairments. The system perpetuates that difference. Theresa explains the system: But if you want to use the system to better yourself and not be in the predicament that you're in, you wouldnt ac cept disability (payment). You can't get disability and make a living at the same time. It's like, forget about disability
156 and just work on trying to better yourself. My biggest dream is to make enough money where I can hire somebody to come in, pay them two hours a day just to help me take care of my daily needs like getting out of bed and bathing. Just not have to deal with the disability and all th at. If I could win the lottery today, that's the first thing Id do. If I never had to call VocRehab again to help me get wheelchair repairs, that's the biggest dream that I could ever have; that's the goal. But as Bill points out, Vocational Rehabilitation is generally considered to be limited to individuals with acquired disabilitie s. Bill had very little luck with VocRehab when he was trying to get a job, as did Mike. Ellen and Theresa have both used VocRehab extensively. Ellen and Theresa, on th e other hand, are not eligible for services from Developmental Services (D/S), a divi sion of Health and Rehabilitative Services (HRS) as are Mike and Bill. The services and funding provided by D/S is based on the medical model of disability and is limited to individuals with congenital disabilities with diagnoses of mental retardation, cerebral palsy, spina bifida, epilepsy, or autism. Combine the delivery of services based on the type of disability with societys reaction to individuals with significant congenital physical impairments, and the reason for the continued differentiation between individuals with c ongenital physical impairments and those with acquired physical impairments becomes evident. In the study done by Green et al (in press) individuals with acquired phy sical impairments such as quadriplegia secondary to auto accidents we re less stigmatized th an individuals with spastic quadriplegic cerebral palsy. The soci al aesthetics of an individual who is paralyzed are easier to identify with than a pers on who is disfigured due to a birth defect.
157 Mike initially highlighted this concept during hi s oral life history and each participant, in turn, reinforced that perception during their life histories. Theresas culture perspective is invaluable I think again of what it may have been like being in the black community and not seeing any other indivi duals with physical disabilities. After an interview session with Theresa, I had written in my journal: I had not appreciated th e lack of exposure that individuals with physical impairments receive in the black comm unity. I have been to many patients houses in the black community, yet I was never made to appreciate that I was seeing these individuals in their home, behind closed doors. I did not know that the black community considered the mother to be at fault if the child was born with a disability. Nor did I realize that I saw very few adults with disabilities out in the community. As Theresa said, Im the first black woman with a disability that I know. Theresa was also the first bl ack woman that I knew with a disability. In that respect, my eyes have been open ed to discrimination that occurs within a culture against individuals with physical impairments. Theresa summarizes for all of us: It bo ils down to being yourself, being who you are. Respect me first because I'm Theresa, then respect me because I'm a mother, then respect me because Im disabled. Those things are more important than respecting me as a black woman. And that goes back to being a person, being who you are.
158 Co-Construction The method of research selected for this study proved the most efficacious because of the extensive personal and professi onal relationships I had with each of the participants. That foreknowledge was essentia l to achieve the depth and understanding of what each participant was willing and capable of sharing. Future studies wishing to incorporate similar topics using similar me thods would do well to assess the extent to which participants are known to the res earcher when selectin g a research method. Our co-constructed narrativ e is unique to this stud y. The mix of the five participants with their respective constructs contributed to the creation of who we are individually and who we became collectivel y (Fransella, 2003; Kelly, 1991). The merits and pitfalls of that co-const ruction are the same--that it is unique. Only the combination of these five participants w ould have yielded these results. The study has the potential of transferability through id entification with one or more of the participants in the study. The pitfall of the co-construction is its replicability. While the process and participants with similar characteristics can be replicated, the dynamics of the coconstruction may yield an entirely different interpretation. The value of the study is what these participants present individually and collectively. The depth to which the participants were willing to share because of our mutual friendship encourages a better understanding of what it is like to be an individual w ith a physical impairment. Understanding decreases discrimination. Following the interviews and at the culmin ation of the life history project, Bill spoke for all of the participants when he said that there was no way in hell that he
159 would have been nearly as forthcoming if there had been another interviewer present. However, an additional interviewer might have proven helpful to develop additional areas of interest through more in -depth, probing questions, thereby adding another layer of interpretation to each life history. A more regimented questionnaire might ha ve produced more consistent results between and among the participants. A format could have been followed and consistent responses could have been obt ained. Such would be the case if this study incorporated only an oral history or any other time limited method of data gathering. Using life history as a data gathering technique that cont ributes to an overa ll ethnography (Angrosino, 2002) of individuals with physical impairm ents discouraged the use of a limiting interview technique such as a script. The que stions needed to be layered and complex. Because each participant had a different stor y to tell, different questions, different prompts, and different facilitory measur es were required that would allow each participant the latitude to describe himself or herself in terms and parameters that were the most meaningful to that person. It was the dynamic process of interviewi ng, of sharing stories and perspectives, that when combined with everything that I had come to know about each of the participants led to questions and probes specific to that i ndividual. Immediate feedback was essential in the interview process. Non-ve rbal feedback was part icularly critical in dealing with sensitive areas. Friendship and intuition helped guide the discussions. My friendship with each of the participants s eems to have magnified as the result of the
160 study. I believe that life histor y is the best data gather ing technique to gain an understanding of what it is lik e to be an individual with a physical impairment. For me, the life history process emerged as a research tool that contributed to the ethnography of a subculture within our society. The process taught me that each researcher assimilates the life history interview process as a tool for research, and the skill for conducting these interviews develops with preparation for the interview, practice of the interview, and precision of knowing the right question to ask at the right time. Life history is an intuitive ski ll that develops over time. Future Considerations Several questions and concerns have arisen because of th is study. The last survey that was done to assess how individuals with physical impairments perceived themselves was done in 1973. Having transitioned from the medical model of disability toward the social model of disability, complete with so cial descriptions of handicap, disability, and impairment by the World Health Organiza tion, it may well be time to re-assess if individuals with physical impairments perceive themselves differently in light of the social construct of disability. It would be in teresting to see what impact the individual model of disability as alluded to by Priestley (2003) has made on the identity construct of individuals with physical impairments. Most of the research on sexuality and disability is from the medical model perspective and concentrates on individuals with acquired disabilities, specifically quadriplegia and paraplegia. In addition to expanding the issue of sexuality for
161 individuals with congen ital physical impairments, studies should also focus on the social perspective of sexuality while includi ng the necessary medical background. Bills impression that there has been no im provement in the employment rate for individuals with physical impairments follo wing the implementation of Section 504 and ADA requires validation. The causes for the inte rpretation of this disparity need to be examined and corrected. Part of our true sens e of identity of who we are is integrally centered on what we do for a living. If individua ls with physical impairments are to make strides towards equality, their sense of pur pose and identity needs to be bolstered by meaningful employment. Research to help achieve that goal is essential. Priestleys (2003) agenda for future resear ch for the disability movement includes race and disability. Theresas glimpse into the life of a woman who is black and disabled eloquently relays that much more could, and should, be written a nd described concerning other cultures, ethnicities, races and disabilitie s. Just as there has been a parallel drawn between the civil rights movement and th e disability movement, the language and the cultures of each minority are beautifully inte rwoven and need to be shared to develop mutual understanding. The societal institutions th at perpetuate polarization fo r individuals with physical impairments should be explored to develop a further understanding of the reason for their creation and retention. Bureaucratic agencies th at provide services t o, rather than with, individuals with physical impairments should be examined to determine their rationale for populations served. For example, why doe s Vocational Rehabilita tion primarily serve individuals with acquired disa bilities and Developmental Services provide services only
162 to those with congenital medical diagnoses? Wh at can be done to eliminate the disparity of services? (According to Bill, it is fairly common knowledge in the disabled community that VocRehab has much more money than a nyone else and if ther e is any way possible to get on V/Rs rolls, one should jump at the chance). What other social institutions intentio nally, or unintentionally, perpetuate discrimination against individua ls with physical impairments? When I began this study, I thought that individuals with physical impairments were on the cusp of acceptance and equality in our society. Bill proved me wrong, maintaining that, handicapped are the last minority that are discriminated against. We are the most discriminated against and that has lasted the longest. Just as this study ha s attempted to do, future studies should be designed to decrease discrimination of individuals with physical impairments.
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176 Appendix A: Self Data Template (Morse) 262.16M 1. Write out five phrases (or senten ces) which best describe "you." a. b. c. d. e. 2. Consider the person who knows you best. Wh at five phrases would you expect that person to use in describing you? a. b. c. d. e. 3. What person or persons (parents siblings, other) are you most like? ___________________ In what ways? 4. What was your role growing up in your family at: a. Preadolescence b. Adolescence c. Now (if pertinent) 5/78
177 Appendix B: Mikes Self Data 1. Write out five phrases (or senten ces) which best describe you. a. Warped sense of humor b. Not quite what others expect c. Loyal d. Smart e. Cynic 2. Consider the person who knows you best. Wh at five phrases would you expect that person to use in describing you? a. Interesting question as I ha ve not seen her for some time, but she probably would say the same as above. She used to say to me that she wished I could see myself the way that she does. 3. What person or persons (p arents, siblings, other) are you most like? Oh, you need to ask my mom for a good answer to that one. But, I have traits of my grandparents and parents. In what ways? My mom: I have what you can call kid stuff. She likes super heroes, magic, fun, etc. My dad: I have my ability to stand my ground and my temper. My paternal grandfather: I have the ability to control my te mper, a health dose of street smarts, common sense, and a sense of humor. My paternal grandmother: I have my sense of order (anal), ster nness, and a lot of backbone.
178 Appendix B: (Continued) My maternal grandmother: I have moxy, eclectic nature intelligence. My maternal grandfather: I never knew him, but from the stories I have been toldhe has got to be in here too. 4. What was your role growing up in your family at: a. Preadolescence: I was a kid. I did kid stuff. b. Adolescence: I was a teen ager. I did teenage stuff. c. Now (if pertinent): I am an uncle. I do uncle stuff.
179 Appendix C: Theresas Self Data 1. Write out five phrases (or senten ces) which best describe "you." a. Always deep in thought b. Never put off tomorrow what can be done today c. Taking nothing for granted d. Never say never e. Dont try and categorize me 2. Consider the person who knows you best. Wh at five phrases would you expect that person to use in describing you? a. Girl, better you than me!!! b. Aint nothing wrong with her c. Treat me like everyone else d. Never feel sorry for her e. Just as stubborn 3. What person or persons (parents, siblings other) are you most lik e? The person I am most like is my grandmother. In what ways? Being raised by her, I have always b een a very strong, independent woman with enormous faith. To raise six of her own childre n and 5 of her grandchi ldren all alone with no husband. She always taught me to put my fa ith in God. Through all the things that life has dealt me, I know that help is just a pray er away. He puts no more than I can bear.
180 Appendix C: (Continued) Everything I go through is for a reason. I ma y never know the reason, but I know God is with me 4. What was your role growing up in your family at: a. Preadolescence: Spoiled Brat b. Adolescence: I was a teen mother and the oldest grandchi ld. I had a lot of responsibility towards my brothers and sisters. c. Now (if pertinent: A lot of family members and friends call me for advice and sometimes to just have someone to listen to their problems. I never judge them. Im just there for them. I may not always agree, but I try to be what they need at that time, whatever it may be. To my children, I try to be Mom and best friend. My children and I talk about all subjects. I am learning wh en to be mom and when to be friend.
181 Appendix D: Ellens Self Data 1. Write out five phrases (or senten ces) which best describe "you." a. Independent b. Self Sufficient c. Controlling d. I like to see things that are started, finished e. A spur of the moment person, when I think of something, I want to do it now. 2. Consider the person who knows you best. Wh at five phrases would you expect that person to use in describing you? Well lets say that if I ask my kids, they will say that I am: a. grouchy b. mean c. The thirteen year old hates me a lot, and the 32 year old, probably thinks more than she will say, probably that: d. I expect more out of her than she is willing to do e. Bill will say, I shop too much 3. What person or persons (par ents, siblings, other) are you most like? Mother ___________________ In what ways? I look like her. We both liked to play Bingo, a nd she was a terrific da ncer, and as was I, before I had my accident. 4. What was your role growing up in your family at:
182 Appendix D: (Continued) a. Preadolescence: I was the baby of the family b. Adolescence: I had to get dinner started, as my mother worked (Like peel potatoes, etc.) c. Now (if pertinent): I am the sister or the aunt that lives far away.
183 Appendix E: Bills Self Data 1. Write out five phrases (or senten ces) which best describe you. a. Fiercely pro-independent as far as peoples rights go, especially disabled b. Helpful to other people c. Like to have fierce discussions or debates d. Like perfection e. A helluva nice guy 2. Consider the person who knows you best. Wh at five phrases would you expect that person to use in describing you? a. independent b. As self-sufficient as possible c. Stubborn d. Grouchy e. A nice person 3. What person or persons (parents, siblings, other) are you most like? Father In what ways? Lost hair like him, his humor 4. What was your role growing up in your family at: a. Preadolescence: I was the eldest b. Adolescence: Spent my adol escence in a hospital school c. Now (if pertinent): Brother, and Dad
184 Appendix F: IRB Approval FWA 00001669 IRB Number: 10257 From 12/11/03 Thru 12/09/04 Informed Consent Social and Behavioral Sciences University of South Florida Information for People Who Take Part in Research Studies The following information is being presented to help you decide wh ether or not you want to take part in a minimal risk research study. Please read this carefully. If you do not understand anything, ask the pers on in charge of the study. Title of Study : Understanding Individuals with Acquired and Congenital Physical Impairments Principal Investigator : Pete Marsh Study Location : Respondent's Residence You are being asked to participate because you are an individual with an acquired or congenital physical impairment. General Information about the Research Study The purpose of this study is to determine how an individual with an acquired physical impairment defines him/herself as compared to an individual with a congenital physical impairment. For individuals w ith physical impairments, are there other factors involved
185 Appendix F: (Continued) that markedly impact their perception of what they can and can't do, such as age, gender, race and culture? This study also hopes to determine if indivi duals with an acquired physical impairment view and use assistive technol ogy differently than individual s with a congenital physical impairment? Plan of Study A life history will be conducted with you usi ng open-ended interview questions. Three to four separate interviews will be scheduled at your convenience in your home, each session lasting 3-4 hours. The interviews will be audio-recorded; the recordings transcribed, and the audio reco rdings destroyed. Following anal ysis of the transcriptions, all electronic and printed copi es will be kept by the prim ary researcher in a secured, locked office environment. Your identity will remain confidential and will not be disclosed. All names, locations and identifying nomenclature will be changed to eliminate possible identification. Payment for Participation You will not be paid for pa rticipation in this study Benefits of Being a Part of this Research Study By taking part in this study you will be gi ven the opportunity to help others better understand the experience of disability and provide a better understanding of how individuals with physical impair ments use assistive technology. Risks of Being a Part of this Research Study
186 Appendix F: (Continued) There are no known risks asso ciated with this study. Confidentiality of Your Records Your privacy and research records will be ke pt confidential to the extent of the law. Authorized research personnel, employees of the Department of Health and Human Services, and the USF Institutional Review Board and its staff a nd other individuals, acting on behalf of USF may inspect the records from this research project. The results of this study may be published. However, the data obtained from you will be combined with data from others in the publication. The publis hed results will not include your name or any other information that would personally identify you in any way. Code names will be used to protect confidentiality. All data will be kept by the primary investigator in either locked files and/or locked office. Volunteering to Be Part of this Research Study Your decision to participate in this research study is comp letely voluntary. You are free to participate in this rese arch study or to withdraw at any time. Your decision to participate or not to participate will in no wa y affect your personal or professional status. Questions and Contacts If you have any questions about this resear ch study, contact Pete Marsh at 941 378 2295 If you have questions about your rights as a pe rson who is taking part in a research study, you may contact the Division of Research Comp liance of the Universi ty of South Florida at (813) 974-5638.
187 Appendix F: (Continued) Consent to Take Part in This Research Study By signing this form I agree that: I have fully read or have had read a nd explained to me this informed consent form describing this research project. I have had the opportunity to question one of the persons in charge of this research and have received satisfactory answers. I understand that I am being asked to participate in resear ch. I understand the risks and benefits, and I freely give my consent to participate in the research project outlined in this form, under the conditions indicated in it. I have been given a signed copy of this in formed consent form, which is mine to keep. ________________________ ___________________________ ______ Signature of Participant Printed Name of Participant Date Investigator Statement I have carefully explained to the subject th e nature of the above research study. I hereby certify that to the best of my knowledge th e subject signing this consent form understands the nature, demands, risks, and benefits involved in participating in this study. ________________________ ___________________________ _________ Signature of Investigator Printe d Name of Investigator Date
About the Author James Peter Marsh is a non-traditional doctora l student at the Universi ty of South Florida. After earning Bachelors and Masters Degrees in Health Education from the University of Florida in 1975 and 1976, Mr. Mars h received a post-graduate de gree in Physical Therapy in 1977. Following retirement from the Sarasota C ounty School District as Program Specialist for Students with Physical Impairments, he retu rned to higher education in pursuit of a Ph.D. in Special Education in 2002. Having served as President of the Board of Directors for United Cerebral Palsy of Sarasota-Manatee for 15 years and as Chair of the Florida Developmental Disabilities Council for three years, Mr. Marsh maintains an avid commitment to advocacy for individuals with physical impairments. His areas of interest continue to be centered on individuals with physical impairments, and, most recently, the assistive technology that improves the lives of individuals with physical impairments.