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"It's really shaped who I am" : identity in hearing siblings of deaf adults Yeo, Siou Shien 2012

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  “It's really shaped who I am”: Identity in Hearing Siblings of Deaf Persons by Siou Shien Yeo B. A., Simon Fraser University, 2005  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF  MASTER OF SOCIAL WORK in The Faculty of Graduate Studies  THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) August, 2012    © Siou Shien Yeo, 2012                  ii Abstract  In the past few decades, there has been a surge of interest in the experiences and perspectives of siblings. The sibling relationship has come under scrutiny for its impact on life quality, life trajectory, and self-identity. Although interest in the perspectives of siblings has flourished, there continues to be a dearth of research on hearing siblings of deaf persons. This qualitative study seeks to help fill this gap by exploring the stories of hearing siblings of deaf persons in a retrospective. The overarching question that guided this study was, “How do hearing siblings of deaf persons navigate their identities?” Semi- structured interviews were conducted with six hearing adult siblings of deaf persons. Questions were asked regarding the experiences of growing up with a deaf sibling, family life, and impact on life trajectory.  A narrative analysis using the categorical-content perspective (Lieblich, Tuval-Mashiach, & Zilber, 1998) yielded an overarching theme of sameness versus difference, with four subthemes of 1) differential treatment 2) sibling de-identification 3) the (un)luck of the draw, and 4) boundaries. Participants navigated their identities through these concepts, articulating an understanding of the positioning of themselves and their siblings. All the stories told revealed that the sibling relationship has had a significant impact on participants' life trajectories and sense of self.                          iii Preface The research methods in this study were implemented with adherence to the University of British Columbia Behavioural Research Ethics Board’s guidelines for research involving human subjects. The Behavioural Research Ethics Board granted approval under certificate number H11-03038.                                                         iv Table of Contents  Abstract......................................................................................................................................................ii Preface…..………………………………………………………………………………………………iii Table of Contents......................................................................................................................................iv List of Tables…..…………………………………………………………………………………………v Acknowledgments.....................................................................................................................................vi Chapter 1 – Introduction............................................................................................................................1  Locating Myself.............................................................................................................................2  A Social Constructivist Lens..........................................................................................................3  Entering Deaf Territory..................................................................................................................4 Chapter 2 – Literature Review...................................................................................................................8 Sibling Theories..............................................................................................................................8  Siblings of Persons with Disabilities............................................................................................17 Siblings of Deaf Persons...............................................................................................................19 The Research Problem..................................................................................................................21 Chapter 3 – Methods................................................................................................................................22  Participants...................................................................................................................................22  Data Generation............................................................................................................................23  Data Analysis................................................................................................................................25  Credibility.....................................................................................................................................27 Chapter 4 – Findings................................................................................................................................29 Celeste...........................................................................................................................................29  Val.................................................................................................................................................32  Elizabeth.......................................................................................................................................36  Linden...........................................................................................................................................39  Mabel............................................................................................................................................41  Bridget..........................................................................................................................................43 Themes..........................................................................................................................................46  Differential Treatment..................................................................................................................46  Sibling De-identification..............................................................................................................50 The (Un)Luck of the Draw...........................................................................................................53  Boundaries....................................................................................................................................58  Constancy and Change Across Time............................................................................................63  Agency..........................................................................................................................................66 Chapter 5 – Discussion............................................................................................................................71  Considerations..............................................................................................................................71  Situating the Findings in Current Research..................................................................................73 Directions for Future Research.....................................................................................................77  Implications for Social Work Practice..........................................................................................78  Conclusion....................................................................................................................................80 References................................................................................................................................................81 Appendix A..............................................................................................................................................87 Appendix B..............................................................................................................................................89                     v List of Tables Table 3.1 Participant Characteristics………………………………………………………………27                                       vi Acknowledgments  Writing is a lonely act, but it is not an act that is done alone – at least not in my case. I feel very lucky to have so many wonderful people in my life during the process of developing my thesis. This study would not have been possible without the following people.  First and foremost, I owe a huge debt of gratitude to the six individuals who took the time and emotional energy to participate in the research. I feel so honoured that you allowed me to share in the storying experience with you. Your generosity of spirit is both inspiring and humbling. Thank you for a wonderful learning experience.  My deep appreciation to the members of my thesis committee – Elizabeth Jones, Vaughan Marshall, and Rachelle Hole. Liz, thank you for supervising me on this project and taking on all that entails. You have been so supportive, not just with my thesis, but throughout my two years in the social work program. Vaughan, I am so grateful for your confidence in my abilities. Without your encouragement, I likely would not have embarked on this journey to begin with. Rachelle, thank you for agreeing to be part of this project as an external reviewer.  A great big thank you to my family and friends. Thank you to Aireen for her advice and interest in the subject matter. Thank you to Doreen for her lack of interest and not being afraid to tell it to me like it is. Thank you to Alex for always letting me put off our conversations when I needed to. Thank you to Pat and Vic for knowing me so well – and not minding anyway. Thank you to Krys, Ken, and Kels for always being there. Thank you to my classmates for being the best part of my education.  Lastly, no words can adequately express my gratitude for the support of my partner, Ryan. Thank you for your kindness, patience, and humour. Most of all, thank you for helping me approach not just this project, but life in general, with more excitement than fear.   1 Chapter 1 – Introduction  “A sibling may be the sole keeper of one’s core identity, the only person with the keys to one’s unfettered, more fundamental self.” - Marian Sandmaier (1994, p. 11)  Over the last few decades, research on the family system has gradually recognized the importance of siblings. Siblings inhabit a unique niche as a social relationship that typically exists from birth to end of life. They are the first peers in life and the first models for social interactions. For many people, siblings are the one constant in their relationship sphere, though the dynamics of this relationship may change throughout different developmental periods and life stages. Sibling relationships are also about our relationships with ourselves, for sibling issues are identity issues. Although research initially focused on secondary accounts of sibling relations, primarily drawing from parental and professional observations, the perspectives of siblings are increasingly being integrated, and even taking primacy, in the literature. However, there is still very little known about the perspectives of siblings of deaf persons. There is also scant research on how having a deaf sibling impacts identity development. This paper explores the perspectives of hearing siblings of deaf persons and seeks to understand how they navigate their identities as a sibling of a deaf person. The term navigate is typically used to refer to plotting or charting a specific route or path; here, it is used similarly, although what is charted is one's identity. To navigate one's identity, then, implies the cultivation of a sense of self which is used to direct one's thoughts and behaviours.  The paper begins with this introductory chapter in which I locate myself in the study by articulating my connection to and interest in the research, as well as explicate the theoretical lens used in conducting the research. From there, some terminology and concepts related to deafness are briefly examined in order to familiarize readers with this territory. The second chapter is a literature review, which briefly explores some of the pertinent theories and research related to this topic. The literature review closes with the rationale for the research question pursued in this study. In chapter three, I explain how the study was designed, outlining key aspects of sampling, data generation, data analysis,   2 and credibility. Chapter four begins with a brief retelling of the individual narratives, followed by an analysis of the emergent themes. The study concludes with chapter five, in which I discuss the findings in relation to how they are situated in the current literature, what they suggest for future research, and resulting implications for social work practice. Locating Myself  My interest in this research is rooted in one aspect of my identity as a hearing sister of a deaf person. This aspect of my identity provided the impetus to explore the research question of how hearing siblings of deaf persons navigate their identities. It also influenced how the interviews were conducted and how the data was interpreted. I freely disclosed my hearing sibling status to the participants, which affected what the participants shared and did not share in their narratives. As Murray (2003) notes, the co-constructive nature of narratives means that they are embedded in an “interpersonal and social context” (p. 107). The knowledge gained from this study is recognized as being contextually loaded.  As the third child in the family, I am closest in age to my younger brother by the span of about two and a half years. Alex was born the only deaf child and the only boy to a Chinese family. There is no previous history of deafness in the family. Because my mother recognized that there were very few resources or opportunities in Malaysia for deaf people, our family moved to British Columbia when I was five and a half years old. From this move alone, I can say that my brother's deafness affected my whole life trajectory. My life would have been very different if we had stayed in Malaysia. In Canada, our family learned sign language through home tutors, and Alex was immersed in the language, attending the Jericho School for the Deaf and Burnaby South Slope. Alex is profoundly deaf, having little to no hearing, and communicates through sign language.  Our sibling relationship has undergone a number of changes over the years. Of the sisters, I was closest to my brother during childhood, so I often attended deaf camp and participated in deaf community activities with him. Because we were close in age, we also fought frequently. As I became   3 older, I became less close with Alex and closer with my sister. As adults, we continue to have a fairly superficial relationship. My dominant emotions about my brother are worry for his future and frustration at past choices that he and my family made and present choices that we all continue to make. Recognizing that each sibling relationship is unique, it is nevertheless likely that I anticipated certain responses from research participants depending on my experiences of my sibling relationship. These experiences, as well as the complex feelings I associate with this relationship, guided some of the questions that I asked, the comments that I made, and the stories that I shared. A Social Constructivist Lens  In looking at how hearing siblings of deaf persons navigate this aspect of their identities, I take a constructivist approach to the research question, which is informed by Denzin and Lincoln's (1994) work on qualitative research. Constructivism is fundamentally the opposite of essentialist and individualist perspectives rooted in the psychological and science traditions. Categories of being are understood as socially constructed – the sibling as a category of being, then, is a social construction. Meanings are created not only within the home, but in institutions outside of it, and different institutions are also brought into the home. That is, larger cultural and power structures may be reflected for example, in parental roles and gender roles, which impact on how siblings construct the identity of 'sibling'. A social constructivist lens is appropriate for the study of identity because it recognizes that identity is always “profoundly relational in that it is bound up with others' identities and shaped by the meanings and ways of understanding them that are available to us” (Edwards et al., 2006, p. 9). And because it is relational and situational, identity is not static but shifting, with different aspects of the self coming to the forefront in different contexts. The 'I' that we construct has multiple parts and is produced by processes of negotiation with the self and with others.  A constructivist approach is particularly suited for this study due to the researcher’s direct experience with the phenomena being explored, and due to the narrative approach chosen. A constructivist undertaking employs an understanding of the subjective nature of reality to co-create   4 stories within a particular space and time. Thus the data created cannot be generalized to a population, but must be seen in the context they occupy. Objectivity is neither possible nor desired, as I am an agent in the study, co-constructing the stories that emerge from the dialectical relationship of the researcher and research participant. All parties to the research assume and relinquish roles and identities as each situation demands, and there are no master identities that cut across settings. Identities are never just given - we articulate positions for ourselves. Thus, certain behaviours are displayed that have an impact on the data generated. Knowledge acquisition is recognized as being tentative, partial, and interactional. Because of this, meaning can also never be fixed because it is open to contestation and reinterpretation. Entering Deaf Territory  When speaking of deafness, it is first necessary to clarify that it cannot be equated with being hard of hearing. Hard-of-hearing refers to varying degrees of hearing capacity; some loss of hearing occurs at one or several points in a person's life, but is not a significant  barrier to spoken communication. Gallaudet University's definition of who qualifies as a deaf person is “anyone who cannot understand speech (with or without hearing aids or other devices) using sound alone (i.e. no visual cues such as lipreading)” (Canadian Association of the Deaf, 2007). For the purpose of this research, the definition of deafness is taken further.'Deaf' here also refers to prelingual deafness – I will focus on those persons born with, or having acquired, severe to profound hearing loss at an early age, which has a significant effect on their capacity to develop intelligible speech (Smith & Campbell, 1997). Prelingual deafness is fairly rare – about 1 in 10,000 in the United States (Glickman, 2003). Because the relationship of siblings in childhood is a major point of focus in this research, it is necessary that participants have grown up with a deaf sibling, thus the prelingual deafness requirement. This is not the final point of departure. There are many types of deaf identities to which one may subscribe. These identities have their academic origins in Glickman's (1993) Deaf Identity   5 Development Scale (DIDS). These four identity types are outlined below and a short explanation of cochlear implants and a summary of ways that deaf people communicate are given.  Culturally Deaf. Although no credible census of the deaf community has ever been conducted in Canada, the Canadian Association of the Deaf (2007) estimates that there are about 310,000 culturally Deaf people. The term culturally Deaf refers to the movement away from a pathological or audiological perspective of deafness towards a claim of deaf people constituting themselves as a distinct cultural and linguistic minority group with their own beliefs, customs, and language (Munoz- Baell & Ruiz, 2000). The preferred use of the capital 'D' is meant to signify this idea that deafness is a culture, not a disability. Rather than a sense of loss that people may associate with not being able to hear, being deaf is a place of identity and a source of empowerment. Glickman (1993) also refers to this positive identification with deaf culture as “immersion”. Because I cannot know how the siblings of the participants view their deafness, the small 'd' deaf is used in the study, but with the disclaimer that it is not meant to signify either support of or opposition to the culturally Deaf perspective.  Culturally Hearing. A culturally deaf identity is directly at odds with a culturally hearing identity, which is aligned with the dominant (hearing) culture's perspective on deafness; that is, that deafness is a disability (Glickman, 1993). A culturally hearing deaf person is likely to communicate primarily through oral language (Glickman, 1993). Glickman's typology is supported by research on deaf persons. Bat-Chava's (2000) study found that culturally hearing deaf persons felt that having clear speech was of utmost importance and that signing was not important. They had mostly negative attitudes towards deaf people and considered themselves separate from the deaf community. In his study of prelingually deaf adolescents, Kobosko's (2010) also found that oral deaf adolescents were more likely to identify with oral language and the hearing community, whereas signing deaf adolescents were more likely to identify with deaf culture and sign language.  Bicultural. The balance between a culturally hearing and a culturally deaf identity is found in biculturalism. Glickman (1993) states that bicultural deaf persons identify with both the deaf and   6 hearing communities and feel that both sign language and oral language are important. Bat-Chava's (2000) study supports this hypothesis. The study found that deaf persons who identified as bicultural felt that both speech and signing were important. They had very positive attitudes towards deaf people and identified somewhat with the deaf community – not as strongly as those who identified as culturally deaf but not as poorly as those who identified as culturally hearing.  Marginal. Deaf persons who identify with neither the hearing nor the deaf community, but are ambivalent or confused about their connection to these communities are termed as having marginal identities (Glickman, 1993). Individuals may feel a pull in both directions, but be unable to reconcile this tension. Lacking this key aspect of identity, they may be more prone to social isolation.  Cochlear Implants. The vast majority of deaf people are born into hearing families (Erting & Kuntze, 2008; Glickman, 1993). This means that their language acquisition is, to a large extent, shaped by health and educational professionals (Bat-Chava, 2000). With rapidly advancing technological developments, the medical community has for some time now been encouraging families of deaf infants into cochlear implantation and the accompanying speech-only intervention programs (Erting & Kuntze, 2008). The purpose of early implantation is to help encourage and nurture the acquisition of language and hearing. However, Johnson (2006) argues that the outcomes of cochlear implantation are very much like the outcomes of deaf persons who are not implanted – there is a wide variation in the ability to hear and speak. Cochlear implantation is an imprecise science and may or may not enable a child to gain functional hearing, depending on the child and the circumstances. If cochlear implantation is successful in the sense that the child gains functional hearing, the child still does not have the same level of exposure to speech that hearing persons do, and his or her oral language development depends to a large extent on the programs and resources available. People with cochlear implants are imperfectly positioned between the hearing community and the deaf community. Given that prelingual deafness is quite rare, the deaf community has a legitimate concern that the medical push for cochlear implantation removes possible future members from their already small community.   7  Language. Deaf people communicate in a number of ways. Deaf persons can be categorized as signing deaf or oral deaf, indicating their preferred style of communication, although a deaf person may be able to communicate both by visual language and oral language. In North America, American Sign Language (ASL) is the primary form of visual language, although some other forms of sign are used, including fingerspelling, English-based sign, and international sign. These are less fully developed as a language than ASL, however, and the deaf community in Canada and the United States have sought recognition of ASL as a true and legitimate language. Deaf people who have some degree of hearing, through the use of hearing aids or cochlear implantation (though these devices do not work for all deaf persons), may be orally inclined, using speech and lipreading as their main forms of giving and receiving information. Their speech tends to have what is known as the 'deaf accent'. It is necessary to note that most deaf children are oriented towards visual language because they do not have the unfettered access to the speaking community that hearing children do (Erting & Kuntze, 2008). Thus, whether their main form of communication is sign or speech is not a function of their predisposition, but mostly a function of what type of education they receive.    8 Chapter 2 – Literature Review  To put a spin on a common phrase, research always stands on the shoulders of the research that came before it. To better situate this study, this chapter reviews some of the literature pertinent to the research question of how hearing siblings of deaf persons navigate their identities. I review some popular sibling theories and concepts, as well as qualitative and quantitative research in the sibling area. The theoretical frameworks that have gained the most ground in sibling research belong broadly to the developmental, psychoanalytical, social psychological, and ecological schools of thought. These frameworks all have direct or indirect implications for sibling identity politics. This section undertakes a brief review of some of these concepts within these frameworks. This is followed by a foray into the literature on siblings of persons with disabilities. While this literature cannot be generalized to siblings of deaf persons because deafness cannot be subsumed under the disability construct, deafness and disability have similarities in terms of a cultural and minority model, which bear out the value of looking at research on siblings of individuals with a disability. Lastly, I review the existing research on siblings of deaf persons, followed by an explanation of how the current literature bears on my research question. Sibling Theories Theory of Mind. One of the developmental approaches that has been prevalent in literature on child development is Theory of Mind (ToM). ToM is thought to develop through language and refers to the possession of “knowledge that the beliefs of others can differ from one's own and also from reality” (Woolfe, Want, & Siegal, 2003, p. 240). It highlights the recognition of persons as intentional agents independent from the self with separate cognitive or mental states. The process of acquiring ToM is associated with an understanding of human psychology and is thus related to the development of skills in communication, interaction, and social understanding (McAlister & Peterson, 2006). Siblings are theorized to be helpful to the development of ToM because they function as a sort of practice arena for the development of these skills. In one study, Perner, Ruffman, and Leekam (1994) administered false   9 belief tests to 76 children aged 3 to 5, and discovered that the more children there were in the family, the better the child's test performance. Similar results were obtained from Jenkins and Astington's (1996) study of preschoolers, where it was found that children with one or more siblings significantly outperformed only children in a series of false belief tests. ToM does tend to be quite narrow and reductionist in its approach. The generalisability of the false battery tests to everyday social performance has also not been demonstrated. For the purposes of this research, the focus in ToM on language is the primary point of interest. Language acquisition and thus the development of ToM may look different for all children in a family with a deaf child. Some existing research has found that deaf children of hearing parents are more delayed in ToM acquisition than hearing children (Schick, de Villiers, de Villiers, & Hoffmeister, 2007; Woolfe, Want, & Siegal, 2002). If siblings provide practice arenas for each other, what impact does a deaf sibling's ToM acquisition have on a hearing sibling's ToM? And relatedly, then, what is the impact on the ability to recognize one's sibling as an intentional agent separate from the self, to differentiate the self? This is a hitherto unexplored territory of ToM research. Birth Order. Birth order is broadly posited to impact the roles we take in life and the personalities we develop. Alfred Adler is widely recognized as the first theorist to consider birth order an important factor in personality development, which he set forth in his theory of individual psychology (Carlson, Watts, & Maniacci, 2006). In Adlerian theory, it is not the ordinal position – the actual birth order – that matters, what is of importance is the psychological position – the actual role one assumes in social interactions (Carlson et al., 2006). Psychological positions can also have blends; that is, one could have the traits of both a second-born and a third-born (Carlson et al., 2006). Birth order has entered the public lingo of psychological explanations of self. The common conceptions are fairly true to Adler's typology. Adler's typology of birth order posited that only children would be perfectionists used to getting their own way, oldest borns would be analytical, controlling, and self- reliant, second borns would tend to be rebellious, independent, and seek to offset the first born's   10 dominance in one domain with dominance in another domain, middle borns would be diplomatic people pleasers interested in fairness and justice, and youngest borns would be thrill seekers ambitious in their goals and skilled at manipulating people (Carlson et al., 2006). However, Adler also accounted for disability in one child and wide age gaps (five years or more) as having possible impacts on psychological position (Carlson et al., 2006). There is more flexibility in Adler's birth order theory than is accounted for in popularized notions of birth order. Since Adler, there have been a number of theorists who have taken up the birth order card. Some have supported his claims, others have modified them, and still others have discounted them altogether. One of the often cited works on birth order is by Ernst and Angst (1983), who surveyed more than three decades of previous birth order research and also carried out their own study of 7,582 young adults, measuring twelve aspects of personality through self-reporting personality tests. They found no major differences in personality traits among first borns and second borns and concluded that birth order was not relevant to personality development. They did notice that in studies where family members were asked to evaluate other family members' personalities, first borns and second borns tended to be portrayed in a different light, so they hypothesized that patterns of behaviour related to birth order may exist, but only within the family environment and do not manifest outside of it (Ernst & Angst, 1983). However, because their tests required self-reporting, they were only able to measure the conscious aspects of birth order; the unconscious effects would have no measurement. Almost two decades after their study was done, Harris (2000) conducted a review of more recent studies on birth order, with the results supporting Ernst and Angst's (1983) hypothesis. Harris concluded that learned behaviour is context-specific and does not automatically transfer to another context. She allowed that behaviour might transfer between two contexts if these contexts were very similar, but even that would be rare (Harris, 2000). Thus, she concluded that our learned patterns of interaction “are left behind, along with other mementos of our childhood years, when we leave home” (Harris, 2000, p. 177).   11 One of the other major works on birth order is Frank Sulloway's (1996) Born to Rebel. Sulloway went through Ernst and Angst's (1983) studies of birth order research and claimed to have different data that supported his arguments. His major point of contention was that eldest children identify with their parents and tend to support the status quo, while younger children rebel against it. Siblings compete in a Darwinian manner for their own niche within the family. Sulloway (1996) ultimately tended to portray first borns in a negative light as staid, tyrannical figures, while portraying younger siblings as creative innovators. By documenting the birth order of famous historical figures, Sulloway (1996) made sweeping claims, attributing the French Revolution, among other events, to the effects of birth order. It was a matter of second borns rebelling against first borns, of sibling conflict changing the course of history. Such sweeping arguments invite critique. Townsend (2000) argued that Sulloway's claims about birth order effects were not well substantiated. He pointed to contradictions in the theory, citing famous first borns such as Mao Tse-tung and Pancho Villa who started revolutions, as well as naming a number of fascists who were not first borns, Goering and Goebels for example (Townsend, 2000). He questioned Sulloway's classifications, calling for better reasoning as to why certain personality traits are assumed to lead to rebelliousness, and also critiqued Sulloway for not revealing the data that he had used to refute Ernst and Angst's (1983) findings. Birth order theories are attractive by virtue of their parsimonious nature and their seemingly intuitive arguments, but they are not without contention. Studies on birth order have also tended to focus on its conscious effects for obvious reasons. The difficulty in measuring the possible subconscious effects of birth order, however, does not preclude it. A narrative analysis that pays attention to form may be able to capture the more unconscious effects of birth order, if any, because emotional truth, while fairly easy to manipulate in the content of the story, is more difficult to conceal in how that story is told. Sibling Conflict. Adler's theory of individual psychology has been one of the most influential theories in sibling studies, if one infers from the sheer number of studies based on his theories. Aside   12 from birth order, Adler also pioneered the work on inferiority complexes and the response to it, de- identification, which are both integral to understandings of sibling conflict. Inferiority complexes are different from inferiority feelings in that they are “behavioural manifestations” (Carlson et al., 2006, p. 59) of those feelings. How a person deals with his or her low self-esteem and poor sense of self is the key issue. The inferiority complex may be categorized as normal if it only restricts a person's life in minor ways but is termed psychopathological if it interferes with carrying out major tasks of life (Carlson et al., 2006). Adler theorized that when one's self-concept fell short, there were several responses to it, which he called safeguarding mechanisms, also known as defense mechanisms (Carlson et al., 2006). These included 1) symptoms, unconsciously manifesting in phobias, obsessions, and so forth; 2) excuses, consciously made to avoid certain tasks and situations; 3) aggression, through putting other people down (depreciation), blaming others (accusation), or hurting oneself in order to hurt others (self-accusation); 4) distance-seeking, through backward movement, standing still, hesitation, or creating obstacles; 5) anxiety, where fear impedes activity; and 6) exclusion tendency, restricting oneself to those domains where success is guaranteed (Carlson et al., 2006). The inferiority complex is purported to be at the root of sibling rivalry (Whiteman, McHale, & Soli, 2011). In sibling rivalry, social comparisons and power dynamics in families are key to the formation of self. Social comparison theory, part of the social psychological tradition of thought, is related to Adler's inferiority complex in its focus on the ego. Individuals use others, especially those they perceive to be similar to themselves, as a measuring stick for self-evaluation of worth (Whiteman et al., 2011). We learn about ourselves through comparison with others. Siblings, typically encased in the family environment together, are thus prone to making extensive social comparisons with each other. Social learning theory posits that this process may result in siblings becoming more alike each other through mimicking and imitation (Whiteman, Becerra, & Killoren, 2009). This is why siblings are judged as alike to each other. Tesser (1980) modifies this theory through her argument that social comparison is not a blanket process; rather, comparison only occurs in those domains that are relevant   13 to how a person defines him or herself. If the domain where the other sibling excels is not essential to one's definition of self, it is of little import. However, if the domain is of key importance and the sibling's performance threatens self-esteem, individuals may respond by improving their own performance in that domain or reducing closeness with the sibling (Tesser, 1980). This idea of reducing closeness is similar to equity theory, which posits that people keep an ongoing tally of the rewards they receive from and contributions they make towards a relationship; when one outweighs the other, they pull out of the relationship (Whiteman et al., 2011). Ideas about costs versus benefits seem to borrow broadly from economics; in a sense, equity theory is about social economics. While reducing closeness with one's sibling could refer to spending less time together or decreasing the level of affection for the other (Tesser, 1980), reducing closeness can also point to the de-identification process.  Sibling de-identification is defined as “the tendency for siblings to consciously or unconsciously define themselves as different from one another in order to reduce competition, establish their own identities within the family, and garner their share of parental love and attention” (Whiteman, McHale, & Crouter, 2007, p. 16). This process of de-identification is an attempt to distinguish oneself from one's siblings in order to escape comparison and the possible resulting feelings of inferiority. Siblings choose different niches and develop different personality traits in order to carve for themselves a unique identity. The results of Schacter et al.'s (1976) questionnaire of 383 students with siblings at Columbia University is consistent with the theory in that de-identification was seen as the primary method for resolving sibling rivalry – the “Cain Complex”. In the study, it was found that first pair siblings (first and second child) de-identified significantly more than jump pair siblings (first and third child) (Schacter et al., 1976). The same results were found in a study of 95 mothers of two children and 45 mothers of 3 children, where the children were an average age of 6.4, although it was the mothers who were surveyed about their children's de-identification rather than the children (Schacter, Gilutz, Shore, & Adler, 1978). The study also found that de-identification was higher for same-sex first pairs, which is consistent with the theory. In Whiteman and Christiansen's (2008) study of first borns and   14 second borns, which tested for both social learning and de-identification, they found that only 20 percent of first borns reported being influenced by their sibling, while almost two-thirds of second borns reported being influenced by their sibling. They also found that when second borns in same-sex dyads reported de-identification, there was less negativity in those dyads (Whiteman & Christiansen, 2008). This seems to support the theory that de-identification operates to reduce sibling rivalry. The positive effect of de-identification can also be seen in that first borns in the study who reported more differentiation were more likely to have well-functioning younger siblings, whereas first borns who reported being a role model for their younger sibling tended to have younger siblings with low self- esteem and symptoms of depression (Whiteman & Christiansen, 2008). However, Whiteman et al.'s (2007) study found that it was difficult to isolate de-identification from other dynamics. In this study of two-parent families with two children, Whiteman et al. (2007) found patterns that younger siblings tried to be different and not compete with older siblings, but they also found that younger siblings tried to be alike and compete with older siblings. There was no clear dominance of either pattern. Adler’s inferiority construct and the social psychological theories draw attention to key dynamics in sibling relationships. However, there are a number of valid critiques of the application of these theories. Research is inclined to be ad hoc in explaining sibling patterns and is often too top- down, in that younger siblings tend to be surveyed and measured much more than older siblings (Whiteman et al., 2009). It is also unclear the direction of and the extent to which siblings influence each other, as well as whether social learning and de-identification processes work together or separately (Whiteman et al., 2009). These theories also do not allow enough room for the context within which comparison happens – that is, differential treatment from parents may have different effects in individualistic cultures than collectivist ones (Whiteman et al., 2011). Perceptions of fairness and justice may differ greatly depending on the roles people are socialized to inhabit. Role Theory. Social learning has been discussed in conjunction with de-identification processes. Social learning is also key to an understanding of role theory. Role theory borrows from both the   15 psychoanalytic tradition and the social psychological tradition in an attempt to explain the dynamics behind this process of identity formation. A general definition of roles is taken from Mendelson, de Villa, Fitch, and Goodman (1997), who describe a role as consisting of “behaviours associated with a position in a social context” (p. 550). These norms of behaviour are “implicitly and explicitly prescribed expectations about functions, obligations, and rights associated with a particular role” (Mendelson et al., 1997, p. 550). Identity in role theory is relational, which makes it ideal for applying to the sibling relationship, for this is where one of our first conceptions of both sameness and difference in relation to another person occurs (Young, 2007). These norms are affected by adult intervention and modelling, gender, birth order, stage of development, and social context (Mendelson et al., 1997). The broad school of social learning theory teaches us that the primary way individuals acquire these behavioural norms, including cognitive behaviours such as attitudes and beliefs, is through observation and reinforcement of the behaviour of others (Whiteman et al., 2011). Role expectations that have been found to be related to birth order include behaviours of teaching, helping, caretaking, consideration, and domination for older siblings (Mendelson et al., 1997). The process of norm acquisition seems to prioritize the stages of childhood and adolescence, when siblings are most likely to have the greatest contact with each other and their family, and thus be most subject to modelling and adult intervention. What might be interesting to examine is how these role boundaries may become blurred through adulthood. Family systems theory. Family systems theory is a broad area of research with its theoretical genesis in general systems theory. Because of the extensiveness of the literature in this area, it is beyond the scope of my paper to address this theory in depth. The general assumptions of the theory are explicated and considered for application to sibling dyads. For this purpose, Cox and Paley’s (1997) review of systems theory as applied to families is helpful. They summarize the general principles of systems theory as wholeness and order, that the sum of the whole is greater than its parts; hierarchical   16 structure, related to the workings of subsystems; adaptive self-stabilization, which refers to the homeostatic function; and adaptive self-organization – adapting, changing in, or challenging the very system itself (Cox & Paley, 1997). Interdependence and continuous and reciprocal influence are some of the main themes that merge from these principles. Cox and Paley (1997) emphasize the importance of boundaries in subsystems, such as sibling dyads, for these boundaries help prescribe how family members learn to interact with each other. This notion of boundaries and norms ties the family systems framework closely to role theory. The principles of adaptive self-stabilization and self-organization also draw attention to the openness of the family system – its ability to change and be affected by larger societal forces that may indirectly impact on the sibling relationship. These changes may be directly related to transition periods in the system and its subsystems (Whiteman et al., 2011). A family systems framework allows for a multiplicity of factors to be examined, at the micro, meso, and macro level, contextualizing the sibling relationship. This context tends to be missing from theories rooted in the psychoanalytical traditions. Most studies on siblings implicitly or explicitly subscribe to systems theory in their analysis, though not always in their approach. Lifespan Theory. The sibling relationship is often characterized as a lifelong bond, yet research on siblings disproportionately favours childhood and adolescence as the foci of analysis. In research on siblings across the life span, there is the assumption that life stages are correlated with different developments and role transitions that impact the sibling relationship. Some theoretical frameworks applied specifically to life span research include Tanner's recentering framework and social convoy theory (Conger & Little, 2010). The recentering framework contends that as people develop new relationships, they pay less attention to their family relationships, while similarly, social convoy theory asserts that some relationships become more important and others less important over the life span (Conger & Little, 2010). Fowler (2009) accounts for one dynamic behind these relationship changes through exploring how motivation for sibling communication develops across different life stages. The reasons siblings communicate with each other is thought to differ depending on what stage of life each   17 sibling inhabits. The results of Fowler’s (2009) survey of 299 participants aged eighteen and older suggest that, though life stages do affect the sibling relationship, the primary motivation for communication at all life stages is relational (intimacy and comfort) rather than for control/escape or obligation.  There is also evidence that parents have an impact on the sibling relationship. It seems a reasonable assumption that becoming older and gaining independence from the parental unit affects how siblings relate to one another. Scharf, Shulman, and Avigad-Spitz (2005) found that the quality of parental relationships had less impact on the sibling relationships of participants in their early adulthood than in adolescence. The finding in a recent Taiwanese study was that sibling support tended to decrease with age, with support most likely to be received in early adulthood and least likely in old age (Lu, 2007). Conversely, White's (2001) study found that social support, in terms of contact, giving, and receiving, tended to decline in early adulthood. The inconsistency among these findings may be a result of small sample size and may also be correlated with cultural differences. Sibling of Persons with Disabilities  Much of the sibling literature focuses on the effect that a child with a disability has on the family. Not surprisingly, the literature seems to reflect the social paradigms of the times. Earlier literature tends to conclude mostly negative effects of having a sibling with a disability. This conclusion is compatible with the medical model prevalent then. More recent literature tends to find a balance between the positive and negative effects of having siblings with disabilities. This finding correlates with the increased acceptance of the social model of disability. “Disability” is also an umbrella term for a number of diagnoses and conditions that are distinct from each other, which makes generalizing among different studies difficult and inadvisable. These studies are generally descriptive explorations of the experiences of siblings, and point to some trends in correlation.  One theme of the research is that sibling perceptions of the child with a disability are mostly typical of general sibling attitudes towards each other. In Stalker’s (2003) interviews of 24 siblings of a   18 child with a disability, most children did not talk about the sibling’s disability when describing the child and tended to emphasize his or her “ordinariness”. Most did not report any restrictions on their activities or impact on their social life as a result of having a sibling with a disability (Stalker, 2003). Similar findings resulted from Baumann, Dyches, and Braddick’s (2005) interviews of twelve school- aged siblings of children with Down Syndrome (DS). Participants’ responses indicated that children were accepting of their sibling’s special needs and did not find the diagnosis of DS particularly important to them (Baumann et al., 2005).  The literature on the effects of having a sibling with a disability is varied – with findings of no effect to findings of advantages and disadvantages. One Taiwanese study found that, contrary to cultural norms which see disability as a source of stigma and “losing face”, mothers reported both positive and negative effects of a child with an intellectual disability on the typically developing sibling or siblings (Huang, Ososkie, & Hsu, 2011). Some of the children in Stalker’s (2003) study reported feeling more aware and accepting of difference as a result of their sibling, but some also reported a high level of anxiety, and almost all worried about their sibling. In terms of observable behavioural problems, Cuskelly, Chant, and Hayes (1998) found no major differences between a group of siblings of children with DS and a group of siblings of typically developing children.  Nearly all of the studies discussed mediating effects of different variables on the sibling relationship, which may help account for some of the inconsistencies in findings. The severity of the disability and the severity of the behavioural problems associated with the disability were mediating factors consistently noted. In a study of 228 siblings, Aksoy and Bercin Yildirim (2008) found that the higher the degree of disability, the less positive the sibling relationship. A similar finding by Orsmond, Kuo, and Seltzer (2009) was that the behavioural problems of children with Autism Spectrum Disorders (ASD) impacted negatively on their relationships with siblings. Parental influence was also hypothesized to have a major impact on sibling dynamics. Stalker (2003) found that the parents of the siblings in her study had made considerable effort over the years to minimize the effect on children of   19 having a brother or sister with a disability. In adult sibling relationships where one sibling has an ASD, parental support was also found to be associated with positive affect in sibling relationships (Orsmond et al., 2009). Parental support – emotional and financial – of the sibling with autism seems to help siblings relate in a more positive manner toward each other. The opposite case – where parents have a negative impact on resilience in children – has also been found. Ishizaki et al.'s (2007) study of Japanese siblings of children with disabilities factored in the mental health of parents, with the finding that siblings were more likely to experience psychosocial problems when mothers had a minor psychiatric illness. Siblings of Deaf Persons  As noted, there is a dearth of research on hearing siblings of deaf persons. The general purposes of the studies on this topic are similar to the studies on having a sibling with a disability – to understand the effects of having a deaf sibling and to explore the dynamics of hearing-deaf sibling relationships. Tattersall and Young’s (2003) retrospective study looked at how six siblings aged 18 to 60 perceived their childhood relationship with their deaf sibling. The researchers’ analysis of these narratives yielded a theme of “simultaneous versions of reality” (p. 112), with participants relaying seemingly inconsistent views of their sibling relationships. These included views on social perceptions of deafness (negative and neutral), the nature of communication (non-problematic and superficial), and views on the sibling’s deafness (acceptance and something to be cured) (Tattersall & Young, 2003). While the researchers acknowledged that these inconsistencies may have been due to difficulties of memory recall in retrospective undertakings, they drew from psychoanalytic theory to conclude that these inconsistencies were the result of psychic conflict or emotional ambivalence, which arises when one has both positive and negative feelings towards something or someone (Tattersall & Young, 2003). In a way, the participants’ versions of reality were a way of meaning-making through this psychic conflict.  Unlike Tattersall and Young (2003), Raghuraman (2008) does not have a specific interest in cultural deafness, with his sample including siblings of deaf and hard of hearing persons. Through a   20 comparison of 35 children with a deaf or hard-of hearing sibling and 25 children with a sibling with no hearing loss, Raghuraman (2008) found that having a sibling with hearing loss did not result in negative effects on the hearing sibling. There were no differences among the two groups of siblings in the areas of feelings of closeness/warmth, perceived parental attention, and household tasks and caregiving responsibilities. One surprising discovery was that the greater the severity of the child’s hearing loss, the fewer the behavioural problems exhibited by siblings. Raghuraman (2008) speculates that in cases of greater hearing loss, the situation may be clearer for family members. This finding has interesting implications for research on siblings of profoundly deaf persons.  Verte, Hebbrecht, and Roeyers (2006) used a similar method, administering standardized questionnaires to 24 siblings of children with hearing loss and 24 siblings of children with no hearing loss. As with Raghuraman’s (2008) study, they found no significant differences in the quality of the sibling relationships among the two groups. The only surprising finding was that having more children in the family was associated with decreased social competence in the siblings of children with hearing loss group, which was the opposite of the control group.  Unlike the previous studies discussed, Bat-Chava and Martin (2002) operate from a family systems perspective in looking at sibling relationships in families with a deaf child. Unlike the two previous studies, participants consisted of parents of deaf children. The researchers examined the effect of several child and family characteristics on the sibling relationship, including type of hearing device used (cochlear implants or hearing aids), birth order, gender, family size, parental anxiety, and negative sibling comparisons. They found that cochlear implants were associated with more positive sibling relationships, as were having more than two children in the family, having a deaf child older than the hearing child, and less parental anxiety (Bat-Chava & Martin, 2002). Having a deaf child as a first-born seems to have the effect of normalizing deafness and minimizing the idea of “difference” in relation to deafness (Bat-Chava & Martin, 2002).    21 The Research Question  Research on siblings has mined the topic matter to produce interesting theories and findings on how people understand and interpret the sibling role, how siblings affect behaviours and thought patterns, and how having a sibling can impact on identity development. Most theories on siblings discussed have their roots in psychology, and these theories tend to be parsimonious in nature. Context is often cited as a variable, but not implemented in the research as such. Nevertheless, sibling theories have provided some useful parameters for how to understand the dynamics of this relationship. Research on siblings of persons with disabilities has isolated one aspect of identity as particularly salient to how children develop and how patterns of interaction form. This is a very rich exploratory area and because of this very richness, does not lend itself to easy correlations. Intervening variables, such as parental attitudes and cultural norms, have a major impact. Similarly, research on siblings of deaf persons understands context as shaping the direction of influence. Most of this research has found that siblings see this relationship in largely positive terms, with few negative effects mentioned.  The research topic of sibling relationships where one sibling is deaf can be justified by the lack of research alone. The existing literature on siblings of deaf persons also primarily examines this relationship in childhood. Very little research focuses on later life stages, and this has been seen to be true of research on siblings in general. Furthermore, though qualitative studies are common to this field of research, there are very few which use narrative theory as their major mode of inquiry and analysis. Because theories on siblings and sibling relationships center on identity formation in relation to others, narrative method is well-situated to explore meaning-making in the context of how people story their lives. Given these gaps in the literature, a rationale exists for the research question, “How do hearing siblings of deaf persons navigate their identities?” This paper aims to contribute to the current body of research by exploring the possible impact of having a deaf brother and/or sister on siblings' understanding of and navigation of their identities. I hope to make a modest contribution to, and stimulate greater interest in, this neglected field of study.   22 Chapter 3 – Methods  This chapter outlines how this qualitative study was designed. Under discussion are the recruitment process, participant profiles, data generation, data analysis, and credibility criterion. The narrative analysis approach is reviewed in the data analysis section. The rationale for applying these methods to the question of how hearing siblings of deaf persons navigate their identities is explicated. Participants  Participants were recruited through the Western Institute for the Deaf and Hard of Hearing (WIDHH), the Greater Vancouver Association of the Deaf (GVAD), the West Coast Association of Visual Language Interpreters (WAVLI), and the Douglas College Centre for Students with Disabilities. I targeted the WIDHH and the GVAD because of their prominence in the province's deaf community. The WIDHH distributed the recruitment poster (see Appendix A) in hard-copy format in their offices and also posted the information online. The GVAD posted the recruitment poster on their DeafBC website. I was referred to WAVLI and Douglas College Centre for Students with Disabilities. These organizations emailed the recruitment poster to their email lists. Participants contacted the researcher directly by email or phone. Although I had some trepidation about recruitment from the beginning, there were no challenges in achieving the desired sample. There was a gratifyingly quick response to the recruitment posters from a number of interested persons.  Participants met the researcher's criteria of having a deaf brother or sister, being 18 years of age or older, and residing in British Columbia. The deaf sibling must have been diagnosed in infancy with severe to profound hearing loss. He or she must also have no diagnosis of developmental disability as this might have added layers of meaning beyond the scope of the study design. The age requirement was set due to the retrospective nature of the study. Because the interviewer's primary language is English, all participants needed to be able to speak and understand English, although it was not necessary for English to be their mother tongue. Participants also had to be residing in BC during the time of the interview because of my preference to conduct the interviews in person.   23  A minimum of five participants and a maximum of seven participants was the set number for the study. Because the study is narrative in nature and does not seek to achieve generalizability, this number of participants was considered adequate to provide sufficient data for in-depth analysis. Furthermore, it was anticipated that participants might provide “shadowed data” (Morse, 2000, p. 4), which would enrich the information gathered. Because the focus of interest in this narrative study was not only on a specific group or population but on the person, sampling is stated to be “illustrative/evocative” (Mason, 2002) in order to avoid any allegations of “truth-finding”. Although ten participants were interested in participating, four of them did not meet all the criteria, so the participant group consisted of six individuals. Table 3.1 – Participant Characteristics Pseudonym Celeste Val Elizabeth Linden Mabel Bridget Age 26 28 25 22 48 20 Gender Female Female Female Female Female Female Ethnicity Caucasian Caucasian Caucasian Caucasian Caucasian Caucasian Sibling Age 24 19 24 20 52, 46 18 Sibling Gender Female Female Male Male Male Female Female Sibling's Primary Form of Communication Oral Oral (Cochlear Implant) Signing Signing Signing Signing  All of the participants happened to be female and Caucasian. All of the participants were also the older sibling in the deaf-hearing sibling dyad, with the exception of Mabel, who also has an older deaf brother. (In Mabel's story, however, she focused on her younger deaf sister). Mabel was also the only participant who was not in the twenty-something age range. Most of the participants provided pseudonyms for themselves and their siblings. Bridget had no particular preference, so I assigned names for her and her sister. Data Generation  Semi-structured interviews lasting one to two hours were conducted with six hearing siblings of deaf persons. Participants were prepared for the interviews through an initial phone conversation, in   24 which I informed them of the purpose of the research, including my personal and academic motivations. I stressed that my approach was narrative, which meant that I was interested in hearing their stories. I also apprised participants of the nature of the commitment required, which included a recognition of the emotional nature of the research topic. I explained issues related to consent and confidentiality, and checked for understanding of these. Participants were given time during the phone conversation to ask questions on any of the above, and were also given at least 24 hours prior to the interview to call or email if clarification was needed.  Interviews were conducted in a private location of the participants’ choosing. For most of the participants, this was a home residence. One interview took place in a university setting, and another was conducted through Skype because the participant was not able to meet in person. A digital audio recorder was used to preserve the entirety of the conversations. I opened the interviews with a review of confidentiality in order to put participants at ease. Specifically, I informed participants that their names and identifying characteristics would not be published, that only the research investigators would have access to the data, and that the audio recordings would be put under lock and key during and after the completion of the research project. Subsequent to discussion of confidentiality, I reviewed consent, checking for questions and comfort level prior to participants signing the consent form (see Appendix B).  The constructivist nature of this qualitative study necessitated that I be completely transparent regarding my own interest in the research. Thus, in reviewing the research question, I situated myself as an older sister of a profoundly deaf brother in a Chinese family. I briefly discussed my interest in understanding how this sibling relationship has influenced my life. By sharing a small piece of my narrative, I hoped to disrupt the hierarchical nature of the interview, giving way to a more reciprocal exchange. I allowed that this sharing would impact what participants would choose to include and exclude in their stories. My hope was that this sharing would also lead participants to begin their stories without excessive prompting because, as much as possible, I wished to keep the interviews   25 unstructured in order for participants to direct the construction of their stories. I was also open with the participants about wanting to hear their stories as they wished to tell them, rather than follow a traditional question and answer format. In a similar vein and consistent with the theoretical underpinnings of narrative methodology, what I might have viewed to be deviations from the research question were not redirected; rather, I followed the participant in her story to see where it led. As Arendt (1958) has noted, “no matter how accidental or haphazard the single events and their causation may appear,” (p. 97) the end result is a coherent story. In place of questions, I sometimes used personal stories. The purpose of this was two-fold: 1) to share pieces of myself so that the exchange did not feel artificially one-sided, despite it containing the artifice that must be part of any research, and 2) an invitation for participants to draw from what I shared in order to share stories with me, avoiding the directive nature of questions and allowing participants more leeway in what followed. When I was compelled to asked questions, following my curiosity, I was guided by Paget's (1983, cited in Mishler, 1991) hesitant and tentative interview style, which is meant to encourage respondents to engage in a similar manner, one that is also engaged in finding meaning. I reformulated questions as I asked them, tentatively offered themes I had picked up, and also probed for the emotions behind certain stories. Data Analysis  The narratives underwent analysis in order to yield themes in emotional structure and messaging. Analysis is predicated on the general theory that storytelling reveals meaning, and more specifically, on Arendt's (1958) concept of the daimõn – the idea that revelations about a person may be more accessible to others than to that person. This is essentially the idea that there may be unconscious messages in a person's story that they may not have accessed, alongside the more conscious and accessible messages.  A narrative approach was chosen due to it being particularly well suited to research on siblings because any study of roles implicitly assumes a study of identity. As Riessman (1993, p. 5) writes, “Because the [narrative] approach gives prominence to human agency and imagination, it is well suited   26 to studies of subjectivity and identity.” People create stories and in turn stories create them. Stories are the stuff of which we build and understand our lives, imbue them with meaning and purpose, and tie them to a larger culture. MacIntyre (1981) writes “It is because we all live out narratives in our lives and because we understand our lives in terms of the narratives we live out that the form of narratives is appropriate for understanding the actions of others” (p. 197). The ubiquity of stories is recognized as an indicator of their centrality to the human experience. Didion (1979, cited in Mishler, 1991) goes one step further, asserting that stories are necessary to living, that “we tell ourselves stories in order to live” (p. 151).  Didion argues that stories provide a way to resolve core universal human problems and avoid crises of culture continuity and discontinuity. Narrative binds values and goals, so narrative functions specifically in situations of conflicting values and interests.   I was solely responsible for all transcription as the process enabled me to gain familiarity with the data, which helped facilitate the process of analysis. I listened to the interviews and read the transcriptions several times. Interviews were transcribed verbatim in order to capture subtle aspects of the storytelling performance. Long silences, laughter, and all other non-word sounds were transcribed. Storytelling is a performance, and these are all aspects of that performance. In the findings, I incorporate excerpts from the interviews. For greater readability and flow, not all aspects of the storytelling performance that were transcribed are presented. However, anything that helps the reader understand how the participant is saying what she is saying, such as laughter, is included. Where my words have a direct impact on what participants choose to say, I also include this in the excerpts.  All interviews were subjected to a narrative analysis using the categorical-content perspective described in the seminal work of Lieblich, Tuval-Mashiach, and Zilber (1998). Because the story form of all six narratives tended to be sequenced more thematically than chronologically, producing topic- centred narratives (Riessman, 1993), the categorical perspective was favoured over a holistic perspective. I also attended to story form as well as content because form is less susceptible to manipulation than content, and thus perhaps reveals more unconscious dimensions of identity (Lieblich   27 et al., 1998). Due to my specified interest in identity formation, Bamberg's (2012) typology of the dimensions of identity navigation was central to the analysis. Bamberg (2012) categorizes identity as always being navigated along three dimensions: 1) constancy and change across time, 2) sameness versus difference, and 3) agency. Constancy and change across time refers to how people position themselves along a spectrum of no change at all to radical change. Riessman (1993) also points to this dimension in categorical-content analysis, asserting that there are several continuity types: intentional, unintentional, continuing without awareness, revolutionaries, and self-made individuals. Sameness versus difference refers to how narrators position themselves in relation to others, of affiliations with identity categories, and of boundaries between the group and the individual. The sameness/difference divide is recognized as central to sibling relationships by Edwards, Hadfield, Lucey, and Mauthner, (2006).  Sameness and difference, then, are two of the key intersubjective notions that children and  young people use when describing and reflecting upon their own sense of self, notions that are  closely tied up with feelings about individuality and being part of a group, belonging,  connection and separation, dependence and independence” (p. 38). Agency refers to how narrators position themselves as active agents or passive receivers. Discursive devices are analyzed for how they mark low or high agency. Credibility  Qualitative research is subject to its own checks for credibility or “trustworthiness” (Riessman, 1993, p. 65), as it is better known in qualitative lingo. The distinction is an important one because many of the typical and more widely-known methods of checking verisimilitude that apply to quantitative research do not factor here. This is due to fundamental theoretical differences about the nature of 'truth'. A qualitative study with a constructivist lens and a narrative approach does not search for absolute truths, but is more concerned with the truths of specific discourses in specific contexts. As Riessman (1993) notes, a narrative “is not meant to be read as an exact record of what happened nor is it a mirror   28 of a world 'out there'” (p. 64), and our readings of these narratives are themselves discursively situated. However, relativism does not preclude measurement. The criterion I use for credibility is taken from Riessman (1993) and Creswell (2007).  Cresswell (2007) writes that reflexivity is an important aspect of any narrative study. To this end, I have made explicit my personal and academic interest in this study. I have also been forthcoming with the participants about my self-location and various aspects of my relationship with my brother. In the analysis, I also draw out the implications of my involvement in the research. Riessman (1993) argues that both persuasiveness and correspondence should be included in validity criterion. The first refers to how well the researcher's claims are supported as well as the presentation of alternate interpretations. In order to achieve persuasiveness, I have supported my claims with quotes from the participants, and where the data indicates more than one possible interpretation, have offered these alternate interpretations. Correspondence refers to member checks – where the data and the analysis are brought back to the participants from whom the data was collected. Participants all had the opportunity for further collaboration – albeit a restricted one - through reviewing the data and the draft analysis to check for factual errors and to give feedback on my interpretations. I brought this feedback into the work by making changes where I felt it was valid. Where participants and I differed on interpretation, I intended to offer both views, while explaining why I felt one to be more valid than another. This ended up being unnecessary as the participants did not offer any major points of contention on how the data was interpreted. Ultimately, I take responsibility for the work and what it says.         29 Chapter 4 – Findings  In this chapter, a short overview of each participant and her story is presented, followed by a more in-depth categorical analysis of the themes that emerged. Celeste  Celeste was the first participant I interviewed and also the only one with whom I used Skype to communicate. Celeste was not able to come to the Lower Mainland to meet in person, but was eager to participate in the interview and expressed her willingness to conduct the meeting through alternative means. After having done the in-person interviews with the other participants, I am quite certain that we could have co-constructed a richer story had Celeste and I met in person. The interview we did was about half the length of most of the other interviews done in person. However, the story we did construct was one which yielded plenty of interesting information about the experience of growing up with a deaf sibling.  Celeste is a 26 year old woman who is pursuing education to become a sign language interpreter. In our preliminary chat, she revealed that she is married and pregnant with her first child. She lives in a small town close to the city of her birth. Her 24 year old sister lives close by and was diagnosed at 18 months of age as having been born with severe hearing loss. Celeste has great affection and love for her sister, which runs alongside criticism of her sister's passivity and lack of self- confidence. Celeste is supportive of a culturally deaf identity, although she portrays her sister as having more of a culturally hearing identity. This is related to their parents' – particularly their father's – concern about her sister fitting into a hearing world. Her sister was mainstreamed, attending the same hearing school as Celeste, with the assistance of hearing aids and an interpreter.  Someone to rely on. Growing up, Celeste and her mother were the ones who were most proficient at signing and thus the ones who were most involved with Celeste’s sister. (Celeste's father has a rudimentary knowledge of sign language, as evidenced by Celeste's humourous mimicking of how he signs.) Celeste stated that she is close with her sister, and attributed this to several factors   30 including their small age gap, having no other siblings, and having few children around their age in the area where they lived. They also participated in many activities together such as horseback riding, Brownies, swimming lessons, and gymnastics. In many of these activities, Celeste was responsible for facilitating communication between her sister and the outside world.  We were in Brownies and she was really big into horseback riding – and so whenever she did  things like that, she always needed an interpreter, and I kind of took – either my mom or myself  – would take on that role. So it was a bit of a different dynamic in that sort of way. From an early age, Celeste was someone who shouldered responsibility. Her mother also relied on her to help her sister with things like translation because “it's just what you do – an obligation almost”. When she was young, this was frustrating for Celeste because she did not have the full sign language capacity in order to be an effective interpreter. As an adult, she still takes on the interpreter role at family gatherings because none of her other family members sign. Her husband will also ask Celeste to translate, which drives her “nuts”. Clearly, this interpreter role continues to be a source of frustration for Celeste, who is irked that other people do not put the effort into learning sign language. However, she allowed that this is “learned behaviour” and thus difficult to change. There is also some learned behaviour apparent in how she and her sister relate to each other. Celeste said that now, she tries to empower her sister to do things for herself rather than doing things for her, implying that she used to do a lot of things for her sister when they were younger. Her life trajectory seems geared towards this role of being the person others can rely on.  As I got older, I became more of an advocate for my sister, I found. And when I was in high  school, I started taking ASL classes, and then I went to Vancouver Community College, and I  took the ASL and Deaf Studies program. And so I, during that point, very quickly became the  person who was telling everyone else about deafness. Whether a function of personality or learned behaviour or both, Celeste has found her niche in a   31 helping role situated directly within the area of deafness. She recognized that her experiences with her sister have led her to take on this type of role.  Every job I've had, it's always been working with people, whether it's somebody with a  disability or somebody who's elderly or just somebody who needs support, I've always been  drawn to that position. And I think that comes from having a sister who's deaf.  It's personal. Celeste is a year into the ASL and Deaf Studies program. It has been an interesting experience for her and one that does not match her expectations. Celeste found that most people in the program do not have the passion for deaf culture that she does; rather, the majority are those who wanted to enter speech pathology but did not get in so they went into deaf education as their second choice. There are only two people in the program who can sign, which really bothered Celeste. She found that her being a sibling of a deaf person gives her a far different perspective than most of her classmates. There is a bias towards teaching oralism rather than embracing deafness as a culture. The program is very “academic”, focused on research, and unconcerned with personal experiences. But whereas for Celeste, where the subject matter is “so personal to me”, this translated as being “a job for them”. Her personal connection to, and passion for, deaf culture is apparent in the following excerpt, where she relayed a conversation with a classmate.  I said, “If ASL is a true language and English is a true language, then why do we place such  value on teaching deaf kids how to speak and use English?” And she said, “Well, if that's how  you feel, then you shouldn't even be in this program. Don't you realize that this is an oral  program?” Celeste stated that she was completely taken aback by her classmate's statement and felt that it reflected the kind of attitude that should not be allowed in the program. For her, the subject matter is not just an abstract concept, it is life – one that she is connected to, both by her sister and by her friends in the deaf community, some of whom are oral, some of whom are signing.    32 Val  When I met Val, I felt an immediate affinity to her. I think this had something to do with being at a similar stage of life. She was the same age as me and, like me, was in the last year of her Master's degree, though hers was in audiology. We met at her school lab and conducted the interview there. Hers was the longest interview, running over two hours, although the time seemed to go by fast. Val was quick to speak and would talk at length without much prompting. She was open with her opinions and would often self-dissect, having an analytical bent. She was the only participant whose sibling had a cochlear implant. Having very little knowledge of cochlear implants, I found this to be a fascinating area for me. Val's story is centred on the unique emotional territory that comes with cochlear implantation.  Val is a 28 year old university student. Originally from a small town in another province, she moved out west with her fiancé to pursue her education, with the intention of moving back home once her education was complete. She originally meant to pursue speech pathology, but quickly realized that audiology was more suited to her. Her sister is nine years younger and was diagnosed at two years of age with bilateral profound hearing loss. She was implanted with cochlear implants shortly after. Val also has a brother five years younger than her. Her siblings are beginning post-secondary education and live with their mom back home.  A parent's worry in a sister's shoes. Val's relationship with her sister is more of a “parenty” relationship than a typical sibling relationship in large part due to their wide age gap. She also identified with her mother and feels that they are very much alike. Although she does want to develop a more sister-sister relationship, she realized progress is still needed in that direction. She continues to stand “somewhere in between” a mother role and a sister role. This is most apparent in how she seems to feel a great deal of responsibility for the well-being of her siblings. Of all the participants, Val voiced the most worry about her siblings. She is particularly concerned about the transitions they are facing.   33  One thing I've been thinking about lately, too, is with both my brother and sister just starting  university, I feel like I could be helping them with that a lot. And because I'm here, I feel  like I can't, like I'm totally helpless, like I can talk to them on the phone about it, but it's not  quite the same. She talked at length about some of the challenges her sister is facing, particularly regarding the self- conscious aspect of speaking with a cochlear implant accent, and feels somewhat guilty that she is not there to help her through this transition. She recognized that she should not feel guilty, but there is a nagging voice in her head that wonders how things might be if she was back home. However, she does not feel free to disclose her anxieties to her sister because she does not want to burden her with those thoughts, to “put that on her”.  It's been like a year now and I just, I'm kind of always worried about everything. And I would  never let on that I was. One of the things she worries about is her sister's choice of vocation, which she is pursuing at a technical school. Val has devoted quite some thought to how well her sister might fare in her chosen field, citing several possible disadvantages and advantages specific to a cochlear implant user. For Val, education is the key to a successful future for her sister. She also worries that because her sister is in a new town where she does not have the safety net of the people who know her and have grown up with her, she might become socially isolated. She pointed to the danger of her sister and her mother spending all their free time together, and laughingly talked of a future where her mother and sister grow old together with cats in their laps. But there is real fear behind this laughter, as Val is keenly aware through her studies of the risk of social isolation for people with cochlear implants.  Soul-searching. Val said that her parents' decision to implant her sister was made without a whole lot of “soul-searching”. However, it seems that Val herself has been doing a considerable amount of soul-searching in the last few years. Although she stressed that she does feel that her parents made the right decision – and possibly the only decision they felt available to them – she is deeply   34 contemplative about the ramifications of this decision. This came through when she spoke of how long it took her family to realize that cochlear implantation would not result in normal hearing, and that more work would be needed to help her sister develop hearing.  I mean there's always how motivated a person is and how hard a person's willing to work  always helps but at the same time, there's probably ways that she's behind developmentally that  she'll really like never catch up on. Like she's, we've kind of put her in this position where she  has no choice but to be in the hearing community. But her verbal skills are still not [there]. Val went on to explain how devastating the hearing world's perspective of people with cochlear implants can be. She also mentioned how her sister became very upset recently because she thought some of her peers were making fun of her accent. It was clear how deeply this affected Val. She also talked at length about the cochlear implant versus deaf community debate. The crux of the debate is that cochlear implant users are imperfectly situated between the deaf and hearing community, not really a part of either. Choosing one path over another necessarily means choosing a different set of opportunities. What value is given to those different sets of opportunities is largely dependent on one's perspective. Although Val's sister has a cochlear implant, Val is able to see both sides of the debate. She explained her emotional reaction upon watching Sound and Fury, a film about one family's decision whether or not to choose cochlear implants for their deaf children. Val said, “I felt all the blood draining from my head and I was lightheaded after. Like it was so intense to watch.” Val felt every hesitation that the family in the movie had, relating it to her own family's decision. Ultimately, though, she stated that cochlear implantation was the best decision for her sister because, as much as there was a lack of support for children with cochlear implants in her province, there was no support for deaf children. She is somewhat resigned to the imperfect nature of any choice, as can be seen in the following passage where Val talked about reassuring her mother regarding the choice of school for her sister.   35  I said no, I don't think you made the wrong decision at all. I think there would've been problems  no matter what you did. So maybe you would've solved some problems but there would've been  different ones. Like I don't, I don't know that there was any right or wrong way to go about this,  and there was no one person that like made a mistake or something.  Connecting the dots. It is only in the last few years that Val has made a connection between her choice of career and the fact that she has a sister with a cochlear implant. People started asking her if she entered the audiology program because her sister is deaf, and she realized that she had never thought about it that way before. That she found out about this study when she started thinking about this connection seems strangely coincidental. She knows that it is not a coincidence, though, that she began thinking about her sister at the same time that she began the audiology program. The subject of her classes is people with hearing impairment and what runs through her mind every day while discussing this subject is “oh my gosh, that's my sister”. Most of the people in her program do not have anyone in their life who is hearing impaired, but for her, personal interest in the topic is greater than her scientific interest. Her research topic reflects this personal connection. Val's research is on how people with a hearing impairment process sound, with the hope that this research will lead to suggestions for how to improve the cochlear implant device. Val also feels that her familiarity with the challenges of cochlear implantation through her experience with her sister will help her be an effective audiologist.  It's not that I necessarily know anything better, but I think now when I'm counselling a parent  and I say something like ok, you know, little Joey's going to need an FM system or just  anything, I think when I talk to them about the educational setting and that kind of stuff, I'm  going to really know that this is incredibly important. If I'm giving a recommendation, it's  incredibly important and I think I'll have that motivation to get in contact with the teacher and  follow  up with the teacher. It is clear that her sister has a major bearing on her career choice, although Val does not know the extent of this influence. She pointed out that not every person who has a child with cancer will become   36 an oncologist, for example. The confluence of a number of factors, including her desire to help people, her fondness for children, and her scientific leanings, contributed to her decision. This was also influenced by her knowledge that audiologists are in high demand but short supply. But she would not have known of this need had she not had a sister with a cochlear implant. Elizabeth  Elizabeth heard about this study through her mother, who saw it on the WIDHH website. Her mother felt that Elizabeth would benefit from talking about her experience as a sibling of a deaf person. From my emails and initial phone conversation with Elizabeth, it was clear to me that this was a topic near and dear to her heart, something that she was keen to talk about. When we met in person, she was very welcoming and had a nervous energy that matched my own. As we chatted and made small conversation, we relaxed with each other and I found her to be very open and forthcoming in the interview that followed. Her manner of sitting on the couch – legs tucked underneath and sometimes sitting on her hands – gave some indication of her vulnerability as she was telling her story.  Elizabeth is a 25 year old woman who works as a special education assistant (SEA) with the school board. She lives in the town where she grew up, close to her parents' home. Our interview was conducted in her parents' home while they were out of town. Elizabeth is fourteen months apart from her younger brother. She has no other siblings. Her brother was born profoundly deaf and communicates through sign language. Elizabeth is also fluent in sign language. Her brother moved to Vancouver with his girlfriend so she does not see him as often as she used to. Nevertheless, Elizabeth stated that she is close with her brother and that the family in general is quite close-knit. In her story, she narrated a journey from not belonging to the struggle to belong to herself.  “All alone”. Elizabeth was one of the few participants who gave her story a title when given the opportunity to do so. I asked Elizabeth if she had a title for her story and she said she would call it “All Alone”. This was the same title as a short story she wrote as a child about being left behind by her brother and his friends. All her life, Elizabeth has felt socially isolated. In her family, she identified as   37 the odd one out, the “black sheep” in her family. She described her brother as this “golden child” with a wonderful personality and handsome features. He has a great relationship with a woman he has known since childhood. Her parents, too, are the perfect couple, with an enviable relationship. Her father is a wealthy businessman and her mother is highly successful in her career, while still having the time to advocate for deaf issues on the side. Elizabeth tends to feel that she comes up short in comparison. She stated that it is as if she does not even belong to this family, so far removed is her identity.  Elizabeth also felt that her brother received all the attention because of his deafness and that, as a result, she was overlooked. Her parents would attend his extra-curricular activities rather than hers if they were scheduled at the same time. Although her mother explained this in terms of the need to interpret for Elizabeth’s brother, Elizabeth did not think this was a valid reason since there were school interpreters available. Elizabeth was also complicit in this attention dynamic as she felt protective of her brother. She was always interpreting for him and doing things for him – “he doesn't have to do anything”. The inattention extended to outside her immediate family. She felt that her grandmother favoured her brother and that people would try to be friends with her just to get close to her brother. Grade 12 was a defining year for Elizabeth as it was the year that her mother put her brother into her school. Elizabeth was once more alone, left in the shadow cast by her brother's glow. I was Elizabeth the whole time I was in grade 12. And then as soon as he came in, I was  [my brother’s] sister. And I already did that growing up. And I was so angry. I just was hurt and  crumpled and  my grade 12 year was a disaster. And I ran away from home, and I went into  huge depression, and all this stuff. Elizabeth was not as open with her feelings when she was younger, describing herself as timid, quiet, and invisible. She stated that she was not the type of person to ask for help or stand up for herself. One of the ways she expressed herself was through self-injurious behaviour, where she would cut herself as a way to release some of the pain. More subtle ways of harming herself emerged in some of the men she chose to be with, men that her mother did not approve of. A response to feeling like the black sheep   38 of the family was to actively rebel and adopt that outsider identity as her own.  Deaf saturation. Elizabeth's mother was very involved in deafness, advocating for deaf issues and integrating the family into the deaf community. She was also the manager of the deaf volleyball team, which Elizabeth’s brother is part of, and highly involved in deaf sports. The family had deaf boarders come and stay at their home and the family participated in deaf social events, such as deaf camp. At family dinners and holiday gatherings, people from the deaf community were often included – her parents' friends and her brother's friends. Elizabeth's friends were not invited and even if they were, she knew that they would be too intimidated and scared to enter an environment with so many deaf people communicating in a completely different language. The result was that Elizabeth felt saturated by deafness. In her words, “my life was so deaf community growing up”.  On the other hand, Elizabeth realized that having these deaf supports in her brother's life has helped him not become isolated. She is glad that, for the most part, her brother has not felt left out. She credited her parents for helping him become the strong person that he is, but wishes that they had made her that strong, too.  She has come to the recognition that in order to develop as her own person, she has to move away from deafness, which means establishing some distance between herself and her family.  Especially growing up with [my brother], I never had my own identity. And now I'm really  struggling. I'm like who am I and last couple of years, I really feel like that's a huge thing that  I'm working on, is who am I and really trying to set boundaries. Elizabeth is searching for the identity she could never really develop under the shadow of her family and under the shadow of the deaf community, which loomed over most of her life. This identity must be separate from deafness but also cannot be fully divorced from it. In her job, for example, she is proud of all that she has accomplished. Gains she has made with one child in particular have been partly due to Elizabeth's fluency in sign language. She recognized that deafness will always be part of her identity, but that it is up to her to manage how it informs who she is.   39 Linden  Being a sign language interpreter, Linden heard about the study through the WAVLI mailing list. We met at her boyfriend's residence as she was in the process of moving to Vancouver from another town, but had not completed the move. She was very receptive to the questions and expressed the desire to help with my research. There was, however, a sense that she was somewhat guarded in her responses. It was during the last twenty minutes of our discussion that I felt she let down her guard more. I may have also felt her to be guarded because she did not discuss her emotions as much as the other participants I had interviewed thus far. Linden, too, noted that she is not too comfortable showing her emotions although she is able to discuss them in the abstract.  Linden is a 22 year old woman with a younger brother sixteen months apart. He is her only sibling and lives in Ontario. Most of her family lives in Ontario, including her father and his partner. Linden's mother died of breast cancer when she was a child, so she and her brother were raised by her father with the help of his partner. Linden's brother was born profoundly deaf and communicates through sign language. Linden's narrative is infused with an easy self-confidence and maturity that belie her years. Her strong sense of self is paired with an easygoing nature that finds humour in life's journey.  Fun and games. Linden defined the nature of her sibling relationship as “visual slapstick” - involving a lot of silly games and jokes. She compared it to The Bugs Bunny and Tweety Show, highlighting the playful nature of their interactions. Linden’s brother was her main playmate growing up and there is a strong sense that she treasures that relationship. As a child, she always wanted to play with her brother, even though he would often be happier playing on his own, and described herself as a “terrible tease” in her attempts to engage his attention. When they did play together, which was often, their interactions were almost Charlie Chaplin-esque. She described an activity called the “gross game”, in which one person would mime doing something disgusting like spitting into the hand and throwing it at the other person. The other person would then have to take the imaginary spit and do   40 something even more disgusting with it. They would play this game for hours, cracking each other up with the fruit of their imaginations. Most of her stories about their childhood paint their relationship in this lighthearted and impish manner. She does feel protective of her brother, but does not consider this protective instinct the defining characteristic of their relationship.  Rolling with the punches. Linden's pragmatic nature comes through strongly in her narrative. She tends to accept things as they come without too much fuss or clamour. Interpretation for her brother, for instance, was seen as just part of her life. They were in a number of sports together and Linden took on the task of interpreting for her brother. She never resented having to do so and views her ability to interpret as a gift. In dinner table conversations, she would even prefer that her family ask her to interpret so that she could “fix” the communication barrier.  Linden, do you want to sign it? Like yes! I'd love to! 'Cause then everybody is getting it, you  know. And for an interpreter with that whole like problem-fixing thing, there's just so many  problems that I can't fix, I'm like aahhh, I'm so stressed out right now - that would be a solution  that I could do. She is a practical person, doing what needs to be done and making the necessary adjustments. The idea of taking things as they come is apparent in a story she tells about the family dog. When she and her brother stay at their father's house, they sleep in bedrooms across from each other. The dog will whine at Linden's bedroom in an effort to sleep on her bed. If he fails, he will try her brother just across the hall. However, the dog does not whine at her brother's door, but enters the bedroom and nudges her brother with his nose without making a sound. She summarized this story as “the whole family adapts”. That Linden rolls with the punches also shows in how she talks about people's reactions to hearing that her mother died of cancer.  Usually, when you talk about it with somebody who hasn't had that experience, you get a lot of  the pity, and the sorry, and it's like no, you don't have to be sorry, it doesn't change anything, it  could even be a good thing in ways.   41 She has little patience for self-pity, for herself or others. In talking about the prejudice that deaf people face, Linden also does not dwell on the unfairness of social practices. She is aware that the world is not a just place, but that this injustice applies not only to her brother as a deaf person but to herself as a woman. She does not rage against the way the world is because there is no point in doing so. That road is just too “dark”, “frustrating”, and “powerless”. Linden cannot control what life throws at her, so she rolls with the punches by being in control of how she reacts to them. Mabel There was some delay in my interview with Mabel as she had recently gone through a difficult break-up and was not feeling emotionally ready to participate in the study. She anticipated that her story would be clouded by her current state of mind. The likelihood of this happening was increased by her view that the break-up was partly due to residual issues from a childhood of having deaf siblings. We postponed the interview until about a month and a half later, when Mabel contacted me to reschedule. I met Mabel at her home and we chatted within arm’s length of each other on her couch. She had a very gentle demeanour that was offset by some nervousness about the interview. Of all the participants, I felt most comfortable interviewing her, although I am not sure why. Mabel is a 48 year old woman with two siblings, both of whom are profoundly deaf. Her brother is four years older and her sister is two years younger. She and her siblings all live in the Lower Mainland. Mabel is closest to her sister and has more of a distant and strained relationship with her brother. This is partly because her brother was schooled in another province from the age of 14 onwards. She has a pleasant relationship with her father, although not a particularly close one as he was not a major influence in her life growing up. Her mother, who raised her, was immersed in deafness, teaching at a deaf school and writing for a deaf newspaper, as well as participating in deaf advocacy. She is not a figure of trust or support in Mabel’s life and their relationship is marked by tension. In Mabel’s narrative, her mother is a pivotal figure. The handicapped one. Mabel saw a counsellor years ago when she was in an abusive   42 relationship. The counsellor told her that she must feel like she is the handicapped one in the family, the one who is different. That was the first time she had thought of her situation that way because she has always had to feel as though she was the lucky one for being hearing. Other counsellors she had seen before had even expressed this view that she was the lucky one in the family. But Mabel does not feel like the lucky one. Growing up, her ability to hear differentiated her in ways that she feels was detrimental to her sense of self-worth. I just felt because I was the one who was quote unquote normal that I was kind of not given the attention that I need. So I kind of felt like the one who was handicapped. This feeling of being handicapped was largely attributed to her mother, who Mabel said was angry at her for her whole childhood. There is the sense that Mabel felt like she did something wrong or that there was something wrong with her to cause her mom to be so angry. In the following excerpt, Mabel again connects this to being hearing, although she struggles to understand why this was so. I just feel like my mom had some resentment towards me and I always felt that it was because I was hearing. But I don’t know if it was I was too needy or because sometimes I didn’t need her as much. Mabel’s sense of being deficient is also apparent in how she described her sister in relation to herself. In her eyes, her sister is the “smart”, “balanced”, and “well-rounded” one. She has her life together, having achieved a stable marriage and a successful career. Mabel, on the other hand, feels as though her life is replete with “bad choices”. It is clear from how Mabel spoke that love and admiration, rather than resentment, characterize her feelings towards her sister. But she does feel that her mother gave her sister more because she was deaf and thus enabled her sister to develop self-confidence. Her sister’s deafness also caused society to react in ways that fed Mabel’s insecurity. Upon hearing that her sister was deaf, people would praise her looks because they did not know how else to respond. Consequently, she and her sister internalized this view that her sister was the pretty one and Mabel the ugly ducking. Mabel showed me a picture of the two of them when they were children and they both looked similarly   43 attractive and cute to my eyes, though Mabel was quick to point out how cute her sister was. This view of her sister contributes to Mabel feeling that her sister was deserving of love, attention, and accolades, and Mabel was not. On an intellectual level, Mabel can understand why this is not true, but on an emotional level, feelings of inadequacy persist.  On the surface of things. Mabel’s narrative made frequent reference to superficiality – the surface layer of things. One of the ways this shows up is in her sibling relationships. Even though she is closer to her sister than her brother, her sibling relationships are altogether “pretty limited and pretty superficial”, not going past the surface. There is the sense that much goes unsaid, that there are layers of that relationship which are not permitted exploration. Another image that Mabel drew is the image of herself as a shell. This came up in talking about the “material things” she was given as a child. She said that she had a “good childhood” because her parents gave her gifts and the opportunity to participate in trips, camp outings, sports, and other activities. They lived in nice house with nice things. Her father placed a high value on appearance. Mabel said that he would not care if someone was “in turmoil internally” as long as they could display the trappings of wealth, such as a nice house or a flashy car. However, these worldly goods were poor substitutes for the emotional nurturing that Mabel sought. I didn't know my place in the world. I felt like – a lot of times – I felt like I was just a shell, that  I wasn't – I didn't feel that I had any worth. And that translated into choices that I made. At another point in her narrative, she described herself as a “shell” again, saying, “I always felt like I had a void in me all my life.” The abundance of material support she received in her childhood seemed to enhance the lack of emotional support. The former did not give her the sense of being cared for which would have helped her feel as though she was worth being cared for. Her mental health suffered as a result – she reported being depressed for much of her younger years. Bridget  Bridget was the last participant that I interviewed. She was one of the first participants who   44 contacted me about the study, but was not able to meet until after she had finished her practicum. As with all the other participants, I informed her that we could meet wherever was most convenient for her, stating that most of the participants found it most convenient to meet at their home. Bridget did not offer her home and I knew that my place was too far out of the way, so we met at the Harbour Centre campus of Simon Fraser University. I was unable to secure a private room, so we sat in small corner that was fairly quiet. Occasionally, however, people did walk past our alcove. My interview with Bridget was one of the shorter ones, running just over an hour, and I think that this had something to do with the public nature of our meeting place. The location did not seem to bother Bridget, though, who had a cheerful disposition from the moment we met to the end of our interview. She reminded me of Linden in how she talked, and this perception of similarity was enhanced by the fact that, like Linden, she was a sign language interpreter in her early twenties.  Bridget is a 20 year old woman in the process of completing her education to become a sign language interpreter. To pursue her education, she moved to Vancouver from the small town where she was raised. Bridget has one younger sister, one older brother, and two older half-brothers. Her sister is two years younger and is attending Gallaudet University the following year. She was diagnosed as profoundly deaf at one year old and communicates through sign language. Bridget is close to her sister and described her family as being close and supportive of each other in general. Bridget's narrative embodied the beginning of a journey as the sense of discovery and unfolding opportunity is weaved throughout.  Me, too. In how Bridget spoke of her family, it is easy to get the sense that love and trust are aspects of her familial relationships which she takes as a given. Bridget described her parents as “really awesome” people that she can always depend on. She stated that she received a lot of love and support growing up, as did her siblings. However, she did feel that her sister's deafness affected her own development. She felt that she had to be more independent early on because her sister received more attention and energy from her mother than herself.   45  She really needed a lot of support and to be advocated for. Now looking back, I understand it,  but you know when you're a teenager and you're like focus on me [laughs] and there was a lot  of focus and energy and time put onto my sister. The attention helped her sister develop into a secure and confident person, “which is awesome”, but Bridget felt slighted as a result. Although her parents attended Bridget's extracurricular activities and gave her emotional support, they gave her sister just “a little bit more”. As a child, Bridget strongly felt the unfairness of this difference in time and attention. She has some feelings of resentment towards her sister as a result, but most of this is directed at her mother, who was the key person in charge of the children's upbringing, making all of the parenting decisions.  An education. In discussions about her past, the present, and an exciting future, Bridget invoked the idea of a constant life education. This learning was always situated as being connected to deafness. Although she said that she learned a lot from her sister, it is implied that this is mostly indirect learning. Her sister being deaf exposed her to experiences and understandings that she might not otherwise have had. From the beginning, it gave her the experience of another culture and the knowledge of another language. The family had deaf boarders come and live at their home and teach them sign language. Sign language interpretation practicum students also stayed at their home, which Bridget credited as the impetus for her to pursue sign language interpretation as a career. Now, in pursuing her career, she is being educated in ways that she was not even aware she could be educated. Growing up with the culture and the language, she thought she “had it all”, but her sign language interpretation program has opened her eyes to seeing the culture and the language in different ways.  I realized that I was kind of interpreting wrong [laughs] with my sister. With ASL as you  probably know, it's not like exact English. You have to flip it around, create – it's like visual 3D. She explained how signing looks different in different social contexts – that conversational signing is much different than the process of interpreting. Through her program, she also came to realize oppressive qualities in her interactions with her sister, such as telling her to wait until after a   46 conversation for Bridget to interpret it to her, thus effectively barring her sister from engagement in the conversation. The program has also revealed oppressive aspects of society in general – the ways in which deaf people are misunderstood. Bridget feels a responsibility to change these constructs.  As an interpreter and as a sibling of somebody deaf, I feel like it's my job to educate sometimes  and just say maybe something as simple as deafness is a culture, culture is shaped by language,  and you know, maybe giving examples of cultural norms and comparing it - that ASL isn't just  English on your hands. Having been given the gift of all this learning, Bridget feels it is her turn to educate others – not just to give back but because it is a duty tied up with her identities – interpreter and sibling. Themes  There was significant congruity in the narratives of the six participants, with a number of emerging themes. One particular dimension of Bamberg's (2012) typology of identity navigation, sameness versus difference, proved salient to these particular stories. Four interrelated subthemes emerged that spoke to the sameness/difference divide: 1) differential treatment 2) sibling de- identification 3) the (un)luck of the draw, and 4) boundaries. In this section, each topic is explored under its own heading, though all in relation to the overarching theme of sameness/difference. The other two dimensions of identity navigation, a) constancy and change across time, and b) agency, were found to function in a cohesive manner as both support of and response to the sameness/difference concept. Differential Treatment  Participants relayed recurring instances of differential treatment based on the categories of deaf and hearing. A major aspect of differential treatment was being given less emotionally than their sibling. One of the ways emotional difference manifested was in feeling a lack of attention as children from their parents. Celeste talked about how her sister's particular needs led to less attention for herself.  Well, if you ask my parents, of course, they'll say that I was always jealous of my sister [laughs]   47  because she got a lot more attention because of all the things that she was going through,  um...and I think that was probably true as well. Celeste also experienced frustration at having to sign for her sibling and still finds it frustrating that other members of her family do not put the effort into learning how to sign. She noted that “I was kind of put in a different kind of role than if I just had a sibling that wasn't deaf.” The role she is implicitly making comparison to is a sister role. When talking about receiving less attention from her parents than her sister, another participant, Bridget, also mentioned how she had to step up and interpret for her sibling even when she did not want to, and the emotional burden of that.  So that was really difficult for me. I mean I had a - like a few [laughs] breakdowns kinda thing,  and uh resentment towards my parents for sure. Bridget's laughter – an interlocutor voice that breaks from the narrator voice to provide evaluation – may denote the desire to distance herself from that past event by making light of it. However, when asked which emotions came to mind when thinking of her sister, resentment was one of them, revealing the emotional legacy of those childhood experiences. Mabel and Elizabeth had very similar anecdotes regarding receiving attention for their extra-curricular activities – sporting activities for Elizabeth and stage performances for Mabel. And then my parents like, even if my basketball game was happening, [my brother] had volleyball and they would always go to [his] volleyball games.  I had no choice. We went to all the Christmas parties and concerts every year at Jericho and um,  I don't remember - obviously, it wouldn't be as exciting for my sister to come to my Christmas  concerts, but I don't remember her coming to mine. They also relayed receiving less from their family materially than their siblings. In describing unfair allocation of financial resources, Elizabeth said her parents paid for her brother's cell phone, and gave him a car as opposed to helping her buy a car. She also had to pay rent while her brother did not. Mabel relayed that her mother paid for her siblings' college education, but insisted that Mabel get a student   48 loan to pay for rent and school, although her mother later paid off her student loan after Mabel pointed out the unfairness of the situation. In both situations, it was a case of, in Elizabeth's words, “they pick him over me.” These are zero-sum games, where one sibling's gain is achieved at the other sibling's loss. This results in an emotional dissonance, where love for, and envy of, one's sibling sit in tension with each other.  Participants were clear on the point that they did not blame their sibling for differences in treatment; they understood their parents as being responsible for that aspect. Irony exists in that parents tended to emphasize that their deaf offspring were no different and should not be treated differently, yet their words were contradicted by their actions. There is a contradiction between being exhorted to view deafness as a normal part of their lives and their siblings as normal and the differential treatment demonstrated by society and parents. Linden talked about this societal pressure to define her brother by his deafness.  If I ever was picking on my brother, teasing him or whatever, it was always like so much  worse because I was picking on the deaf kid. Not just like my brother. In society's eyes, he cannot be “just” her brother; he is her deaf brother, which is presupposed to alter the nature of their relationship. Val talked about her father treating her and her sister differently because of his skewed idea of what siblings should be like and because he pathologized the idea of deafness. She never resented her sister, though, but resented her father's idea of what sibling relationships should be. The conflicting nature of her father's messaging is clear, as in the following passage, where she uses the character voice of her father:  And so then when [my sister] was born DEEEAAFF, oh my god, she's deeeaaff? And she's the  youngest. It was like, we must do everything for her allll the time and don't ever get mad at her  and like - you know, he was sooo overprotective of her. But then if anything - if anybody else  ever said anything like ohh [she’s] deaf, he would be like [gruff voice] "What? Don't feel  sorry for her! What? She has a cochlear implant! She can hear. She's fine. Like just 'cause she's   49  deaf!"  Differential treatment was seen to extend outside the family domain to the larger social world. What was learned about worth and non-worth in the family was reinforced by their interactions with society. Elizabeth and Mabel relayed very similar childhood anecdotes of differential treatment at the hands of strangers. Elizabeth had a very vivid memory of an experience at a bakery.  I remember we were at Bunsmaster when I was probably like 7 and a lady gave my  brother my cookie - and I know that they're coming from like a bad place 'cause they feel  sorry for him so they handed him, but then as a sibling, you're standing there like  where's my cookie? Elizabeth's wording of “as a sibling” is particularly telling because her perspective of that event is shaped by that sibling role, which gives primacy to fairness and social justice. Mabel's ice cream anecdote also emphasizes the unfairness of the treatment received.  And just society made um my sister - I remember specifically one thing, and this  happened different ways throughout my growing up. Um, she and I and my mom  went to this restaurant on West 10th. And my sister and I both for dessert ordered ice  cream, vanilla ice cream. I got a scoop of vanilla ice cream and [my sister] got a vanilla ice  cream with a smartie face and an ice cream cone hat. Following this story, Mabel used present tense to talk about her perception that her sister was treated differently because she was cuter and smarter, before quickly correcting herself to past tense, revealing the immediacy of the memory and, as illuminated from the rest of her narrative, a continued belief that her sister is cuter, smarter, and deserves more. Although both narrators were able to explain this differential treatment in terms of social ignorance, the anecdotes were clearly very sharp memories and revealed their belief as children that their siblings were somehow more deserving of all the things they received.    50 Sibling De-identification  In the process of sibling de-identification, siblings differentiate themselves from each other in order to escape rivalry, competition, and feelings of envy or resentment. One's sense of self depends on sharing out personality traits and domains of performance in order to carve a unique identity. Each sibling has a different role to play in the family. Although de-identification did emerge as a clear theme, the mechanics of this process did not always conform to the research.  Three participants – Elizabeth, Mabel, and Bridget – described their siblings as secure and confident, moreso than themselves. These are the same three who felt like they received less attention from their parents as children due to the focus on their siblings. Mabel and Elizabeth felt like they had less “identity” than their siblings. Mabel compensated by trying to be the “good” sibling.  And I think that, and that other reason I didn't have that strong sense of self, self-worth, and  identity, is from my childhood and me feeling like um not..not, just not um worthy of the  attention that my brother and my sister got. So I must not be as important. So, and I always  wanted to please people. Mabel continually brought up the idea of her sister as the “perfect” one and herself as the flawed one, thus implying a strong sense of differentiation. But she was ultimately not able to garner the affection and attention from her mother that she desired, and struggled with developing a strong sense of self. Similarly, Elizabeth talked about her brother as the “golden child” and herself as the “black sheep”. Elizabeth tried to turn herself into the “golden child” when she was young by always being on her best behaviour and never causing trouble. As she got older, however, her frustration at not being able to change roles lead to embracing the “black sheep” role she felt she had been given, and de-identifying not just from her brother, but from the whole family. In talking about how her parents have the perfect relationship and how her brother and his girlfriend have a “perfect little relationship”, she said “I've always go with like the bad boys, and I don't know why, but I think it's because I rebel in that sense.” But the sense is that she was pushed into that rebellion, that it was not so much a choice but an   51 inevitable consequence of having such a “perfect” sibling. Her brother possesses the natural athletic ability, the enviable body type which he does not need to work at, unlike herself. In comparing with her brother, Elizabeth 'loses'. Elizabeth also brought up the idea of her brother being exactly like her mother and herself being like her father, positing clear dichotomies in terms of personalities. As well, in stories of unfair treatment where her father was implicated, she never assigned blame to him, but focused on her mother. She also told a separate anecdote about her father standing up for her. In terms of alliances, it is brother-Mom and Elizabeth-Dad.  She and my brother are like the spitting image of each other, though. Like they are so  personally, like personality-wise, are so alike and me and my dad are really alike. He's very to  myself and quiet and when he gets to know somebody he starts talking and and yeah, we  definitely are alike. In the above excerpt, Elizabeth even used the wording of “to myself” rather than “to himself”, indicating the depth of her identification with her father. Although Elizabeth significantly differentiated herself from her brother, her feelings of being inferior to him were strong – at least within the family environment. She asserted that this is an ongoing struggle, and in this sense, her efforts at differentiation may work towards achieving a goal of a strong sense of self and worth.  Differentiation in Bridget's story is less focused on feelings of inferiority than on carving out a niche. Bridget did identify herself as “shyer” than her sister, who is “confident”, but she talked about them both being outgoing and social. The main sense that de-identification is important came in her mention of having the “middle child syndrome” of not having an identity.  Like my older brother, he was always like funny and like social butterfly - everybody knew  him - and my sister was deaf and the baby. So I always felt like I was just like...nothing.  [laughs]. But I mean that's not fair to say either. I had a lot of support and love and I - but I  always felt like I had to be good at school, be good at sports, everything like perfect 'cause I had  this kind of perfectionist quality. Maybe that was because I was middle child and because I had   52  a deaf younger sister and a crazy hearing older brother. [laughs] Bridget identified very clear roles her siblings possessed and, like Mabel, defaulted to being the “good” child, trying to please everyone. That was how she could carve an identity for herself. And when talking about school, Bridget said that she was strong and confident in her own identity, indicating a situational quality to sense of self. Perhaps the feeling like “nothing” was limited to the realm of her family environment and the realm of a specific time in her life – spatially and temporally based. She talked about how in the school environment, her sister is known as Bridget's sister. In the deaf community, however, Bridget is known as her sister's sister. In the overarching community, she is her father's daughter. Her role changes according to the environment. This supports Harris' (2000) conclusions on birth order roles – that they are context-specific and do not automatically transfer from one environment to another. Val also mentioned birth order as having an impact on her sense of identity.  I'm the oldest so I was who I was, everybody knew me already anyways, I was Val. And then  [she] was my sister, whereas I think maybe that would be different for somebody who say like  they had a deaf older sister, they were the youngest in the family or something. Not only is Val articulating an idea of birth order, her words also allude to the bias in sibling de- identification research where younger siblings are thought to participate in comparison and de- identification moreso than first borns. However, there is no clear birth order or de-identification pattern across the stories. Linden and Celeste did differentiate themselves from their siblings, one in terms of extroversion and the other in terms of focus, but they balanced these with a number of similarities in personality and interests. There was no indication that differentiation was particularly important to their sense of self. Val spoke of being completely opposite from her sister, having no similarities at all. She seemed to have a strong sense of self and also claimed that her sister had a lot of self-confidence, as well. This seems to be in accordance with de-identification research. But Val is nine years older than her deaf sibling and, by her own admission, has more of a “parenty relationship” with her sister. The   53 participants who presented the clearest sense of self - Linden, Celeste, and Val - were the eldest of their siblings, whereas Bridget and Mabel were the middle children. However, Elizabeth was the eldest but was similar to Bridget and Mabel in having less identity claims as a child. As well, Mabel's main mode of comparison and feelings of inferiority tended to stem from her younger sister, and she is the elder in that dyad. Bridget is also the elder in her hearing-deaf sibling dyad.  There are, however, some other interesting patterns that do emerge. It is noteworthy that the three participants – Elizabeth, Mabel, and Bridget – who had some difficulty as children establishing a niche for themselves were also the ones who had mothers who were strong deaf advocates. All three commented on having had deaf boarders come and stay at their home. Correspondingly, their siblings had very little orality and primarily used sign, whereas Celeste, Val, and Linden's siblings could lipread and had greater orality. The de-identification process might be seen as easier in a relationship of clear opposites – deaf/signing versus hearing/oral – but in actuality, this does not pan out. It seems that in families where siblings primarily signed and families were involved in the deaf community, 'deaf saturation' in a sense caused increased difficulty or struggle in de-identification claims. The (Un)Luck of the Draw  The (un)luck of the draw refers to the idea of chance and choice – that we are each drawn (or we each draw) different cards. Sometimes we think our cards are lucky, sometimes we think someone else has a better card, and sometimes we turn an unlucky card into a lucky one. This theme involves the emotional environment around fundamentally different categories of being. Participants explored the worth and non-worth of the not-so-immutable categories of hearing and deaf. Chance often becomes choice, as in the often spouted “I-wouldn't-change-a-thing” idea that flourishes after the fact – it is one thing to be confronted with a choice, it is another to look back on something already done. We justify decisions made by ourselves and by others in order to accept their consequences. A number of participants demonstrated marked ambivalence about the value of deafness versus the value of hearingness.   54  Bridget talked about how she would not change the cards they had been drawn - “I wouldn't change it for the world” - because of the experiences her sister's deafness has given her. She is also confident about her sister's ability to succeed in the world as a deaf person. However, Bridget also asserted that certain aspects of her sister's deafness must be hidden.  Bridget: I mean I don't know if this is [laughs] politically correct, but we always said you know  um turn your voice off, because people are gonna think that you have a disability because, you  know, the deaf voice sounds different. So she, she was always like ok. She understood that. We  weren't like rude - oh you sound you know whatever, but um. But yeah, now she doesn't care.  And nobody ever really picked on her for using her voice or anything because we always said  you know-  Arby: Turn your voice off. [laughs]  Bridget: [laughs] Which I don't think is oppressive or anything. I think it's just a fact of life. You  know people don't understand. Bridget is articulating the social risk of speaking as a deaf person. She implied that other people do not understand that deaf people do not automatically have deficits in cognition. The deaf voice has an accent which could be perceived as an indication of intellectual challenges. Bridget is keen for her sister to not be seen as having been drawn that particular card. Val also mentioned this faulty social perception, relating a study she had read where employers all thought the deaf person they interviewed had an intellectual disability. As her sister is oral but has a cochlear implant accent, Val feared that she would also face this kind of discrimination.  A subtheme of reverse handicap is prominent in Elizabeth and Mabel's stories. In their cases, the hearing “card” was the unlucky one and the deaf “card” was the lucky one. For both participants, an inversion of the larger pattern in society where deaf people are minoritized and made to feel less than was found within their families. Elizabeth and Mabel felt like the minoritized and less than members of their families. They frequently described themselves as the ill or “handicapped” one in the family, in   55 contrast to their healthy and “perfect” sibling. This is best summed up by Mabel's assertion that “I truly feel that my sister's deafness in this case helped her become a more whole, happy person, whereas my hearing, hearingness was like a detriment.” Mabel went on to amend her statement, saying that “I don't know if it was really that, because I was hearing and she was deaf, or if it was just because of the way we were parented,” indicating a recognition that one cannot separate the disability from the circumstances – it is always socially embedded. Despite this recognition, Mabel explicitly connected being deaf to being rewarded and being hearing to being “punished” several times in the narrative, as in the following passage:  Mabel: Yes, because I was given the gift of hearing so I have, so it's like, not like I'm  being punished, but it's, yeah it should be my obligation. You're right, like what you said, like I  owe it him.  Arby: And you say it's not like you're being punished, but it sounds like growing up your  whole life, you were punished for being hearing.  Mabel: I felt that, yeah. The irony of the “gift of hearing” wording is not lost here. On three occasions, she used the wording of wishing or wanting to be deaf when she was younger and frequently spoke about her mother resenting her for being hearing. It is only near the end of the narrative that she discussed being “fortunate” for being hearing and re-interpreted her previous statements by saying “I probably didn't wish I was deaf, but I wish I was treated differently.”  The reverse handicap subtheme particularly presents itself in an illness metaphor. Mabel discussed a childhood where her deaf brother would tell her she was “weird” and had “germs” because she was hearing. Her deaf sister would try to throw ice cream into her mouth so that Mabel's hearing germs would not contaminate the spoon. In Elizabeth's discussion of her clinical depression, she contrasted her continued illness with her brother's healthy recovery:  I think also the things that happened with me like my depression, he never got. He got rid of   56  that anxiety when he was younger, and he got treated for that. But then he was on medicine,  now he's not on medicine, and he doesn't need it and he's doing great with the anxiety and here I  was, I was still depressed and maybe that's in the back of my head, that I wanted to stop my  antidepressants 'cause well he's off his meds and it's always been such a comparing with them-  with him. In this comparison, Elizabeth always comes up short. Not just with her brother, but with “them” - her family. She saw her family as a healthy unit and herself as the unhealthy or diseased part of that unit. In her narrative, she described her brother as never making mistakes and being “perfect” and the “golden child” and herself as “less than him”. Mabel, too, described her sister in a tone of certainty and admiration as “perfect”, “well-balanced”, and “more valued”. Both grew up with low self-esteem which they realized translated into some poor choices that they made.  The idea of a reverse handicap also emerges with Linden describing the deaf advantage of being largely immune from hearing or perceiving trouble.  Linden: Um, and with deaf people, they get the impression that oh like they're really naive. And  not even naive, but they're really um like childlike innocence, I would say. Um, so then my  brother always gets the benefit of the doubt and stuff like that, and childlike innocence attached  to him. And it's like no way, little brother. I know what you do. [both laughing]  Arby: Sort of like your dad believing him over you, right?  Linden: Exactly, yeah. Exactly! And it was really interesting growing up kind of related to that,  different, bit of a different frame, in that you would just go and like do anything and we  wouldn't really get in too much trouble for it because he was deaf so either he couldn't hear the  trouble that was coming at him, or it just didn't have the same effect or whatever. Mabel and Elizabeth also talked about this advantage of deafness – that it protected their siblings from getting into trouble. Elizabeth remembered getting “the brunt of all the screaming” from her parents and that she “always got yelled at because they can't yell at [my brother]”. Mabel, too, observed that   57 her sister did not pick up on tension or tone like hearing people do, which shielded her sister “from the things that hearing people would maybe internalize”.  But Mabel and Linden also talked about feeling bad for their sibling for being deaf. Mabel said she felt sorry for her brother because he would never be able to listen to music or hear his children speak, although she would never tell him that. Linden talked about feeling as a child that she wanted her brother to be hearing so that he could experience music, movies, and television. She believed that “his life must suck”, but reassessed that belief as an adult, saying, “I don't, don't feel as much [that his life must suck]”. Both Mabel and Linden said how glad they were for the things that deafness had brought into their lives. This can be described as sometimes feeling glad for deafness, but feeling bad for deaf people.  Val's story is quite a bit different from the others, which is likely due to the unique nature of cochlear implantation, as well as Val's large age gap – nine years – from her sister. Much in the same way that Val described her sister and other cochlear implant users as stuck in between two worlds – hearing and deaf – but not really belonging to either, Val has a parallel emotional journey of being stuck in a “funny grey area” of really not being sure what card her sister has been drawn. Throughout Val's transcript, words like "devastating", "totally broke my heart", "guilty", "worried", and "scared" are often voiced. Because the boundaries of hearing and deaf in cochlear implantation are blurred and complicated to navigate, Val has a difficult time navigating her own feelings, her own emotional ambivalence. The emotional content of Val's story is very much about being conflicted, and conflict by definition is being held or pulled between two different things. She spoke about the validity of the argument against cochlear implantation, but also defended her parents' choice by saying that it was probably the best option for them considering where they were and the lack of resources. She judged that “I don't know that there was any right or wrong way to go about this.” But the worry that ran through her story was the emotional backdrop which washed over everything. The depth of Val's emotional conflict – and worry and fear for her sister - was revealed in the debriefing, where she shared   58 that when she recently heard from her mother that her sister had said, “I wish I hadn't been born deaf”, Val went into a state of depression for three weeks and could not even speak for one day. When asked what emotions came to mind when she thought of her sister, the first one she named was fear and she emphasized that that was “a big one”. She is constantly fearful for her sister.  Val: Um, and she's doing well - she's doing very well - but I always kind of wonder like how  well would she be doing if, you know, this had gone differently or whatever. And so it's very  frustrating 'cause you  just feel like-  Arby: You're always questioning if you're-  Val: You're always questioning and you - even though there's nothing to fight against, like  you're not actively fighting against anything, you just like, you almost feel like you are. Like  you're just kind of like raging against this circumstance that just is what it is. Val used the language of “fighting”. I would go one step further to say that she has given this fight a more substantial form (than the frustratingly intangible one she described) by her choice of audiology as a career. The fight can then be defined as a scientific one, and she is thus a scientific soldier, crusading not only for her sister but against her own emotional conflict. Boundaries  Identity navigation, to a large extent, is about boundaries – defining them, blurring them, guarding them. The divide between “us” and “them” is part of how we understand where we begin and where we end, who we are and who we are not. Tension is felt between the wish to connect and the wish to be separate. The participants in this study articulated an awareness of the boundaries they were engaged in navigating.  One of the major arenas of struggle was the deaf-hearing boundary. For Mabel and Elizabeth in particular, this boundary was not well patrolled growing up. They articulated this theme in various ways throughout their narratives. Elizabeth said, “My life was so deaf community growing up” and Mabel stated, “I felt like I never had a break – from deafness.” Commonalities in their stories include   59 having mothers who were very involved in and strong advocates for the deaf community and having deaf boarders come and stay with them. Deafness becomes intertwined with the idea of family to the point where the family comes to symbolize all things deafness.  Individual identity and deaf identity were blurred together. For Mabel, this blurring of self and deafness reached the extent where she had to pretend that she herself was deaf. She told two stories, one in which she was a teenager and one in which she was an adult, where she had to adopt a deaf identity. In the teenager story, her mother told her to pretend to be deaf on a Jericho school field trip so that she would not have to pay the entrance fee. In the adult story, her brother exhorted her to pretend to be deaf on a camping trip so they would not have to pay the firewood fee. She instinctively spoke back to the firewood person when he came around, incurring the wrath of her brother. These were lessons in having to hide a part of herself in order to be accepted. For Elizabeth, she did not exist – her identity was supplanted by deafness. Elizabeth asserted, “And I didn't know who I was growing up – like I had no identity. It was just deaf world.” She stated this using similar wording several times more in her narrative. She also discussed a major low point in her life in grade 12, when her mother enrolled her brother in her high school. Prior to that, school had been her “space away from the deaf community,” but after, “As soon as he came in, I was [my brother’s] sister.” Her identity became tied to both family and deafness again, which for Elizabeth, is interchangeable.  Elizabeth and Mabel narrated struggling to establish their boundaries with the deaf world and with their families as they grew older. This is necessary to achieving a sense of self as can be seen in Elizabeth's statement, “A hard thing was who am I, because I don't want to be deaf culture. I want to be Elizabeth and I want to separate those two things.” The way she has chosen to do this is to separate herself from her family.  I just had to like step back from my family. I can't be who I want to be whenever I'm with you  guys. It's a huge fight, it's a huge fight to try and do that. But I think it's a bit better now.  Especially since they leave and they're not around, and it's like I'm free, I can be who I want to   60  be. She is only allowed to be her own person in the absence of the family unit. In the second sentence above, she speaks as if addressing her family directly. The use of this character voice is almost akin to practising or rehearsing a speech in order to maintain vigilance over her boundaries. Elizabeth experienced being excluded and isolated from her family and a response to that as she grew up was to exclude and isolate herself – to take that agency back. For Mabel, her struggle is to separate her deaf role (interpreter) from her family role (sister) as in her story about being asked to interpret for her brother at their grandmother's funeral. And I said, I, I said I refuse to do it, and I said, not because I'm trying to be mean but because  then I will miss out. And I said to [my brother], I'm not going as, you're not hiring me, you should've hired an interpreter, I said I'm going as your sister. This statement conveys Mabel's attempt to separate her family identity of “sister” from the identity of interpreter, which in the past has confounded deaf world with her family world. Her statement to her brother is her attempt to wrestle her own identity back by drawing a line in the sand as it were.  Most of the participants articulated an understanding of how boundaries came into play in their career choices. Much of identity is tied to our work and for the participants, work was a place where they felt good about themselves. Bridget, Linden, Val, and Celeste all saw their careers as being related to deafness. Bridget, Linden, and Celeste are in the sign language interpretation field. Val originally wanted to enter speech pathology but realized audiology suited her better. Bridget talked about how her mother was surprised that she choose a career related to deafness.  My mom was really shocked - she was like I can't believe you want to be an interpreter, you  hate it. It's like no, I hate interpreting for my sister. There's a difference, I think. Like Bridget, Val was quick to point out that she does not dislike working with deaf people, she disliked working with her sister. This points to the recognition that her identity necessitates the separation of working with the deaf and interactions with family.   61  [My dad] was like [gruff voice] you never helped [your sister] with her homework! If you were  gonna be a speech pathologist, you'd be wanting to help [her] every day and help her like  learn to talk better and stuff! And I'm like, yeah, no, that's, she's my sister, I don't care about her.  [laughs] And again, that was my own ignorance of myself and my own motivations. Val named her audiology program as responsible for helping her become more aware of herself and her motivations. Her participation in the program has increased her awareness of the issues cochlear implant users face, and thus issues that her sister faces. In her educational life, then, she is constantly being immersed in contemplation about the consequences of cochlear implantation for her sister. Although her physical self is several provinces away from her family, her mindset is still very much at home. In contrast, Linden specifically sought to create partitions in her life. Confounding work and play is seen as problematic, so there is a “don't-bring-your-work-home” mentality.  I'd experienced how small the deaf community can be and how like if I'm going to be  working in that community already and be a huge part of my career, be involved in that  community, like I don't want my personal life to be involved too, so I purposely keep my  weekends and that sort of thing to, to my hearing friends. But, of course, the work is personal for Linden and she is personally involved, as she recognized several times throughout her narrative. But Linden does delineate quite clear boundaries – an understanding of where she places herself in the hearing and deaf world.  I've been feeling like sorry for my brother all this time and really like he's been given a gift of  ownership, like part ownership of culture. Yeah. No matter how hard I try, I can't really be  because I'm just not in the in crowd. I'm in the fringe crowd. But not in the in crowd. That he is.  And that's cool.  For Mabel, she used the wording of “intentionally” not choosing a career related to deafness. She did once work at the Western Institute but stated not liking it “because of the deafness”. However, Mabel has had opportunities to use sign language in her job, which made her feel good about herself.   62 This is a recognition that there are positive aspects to having been immersed in deafness, that she gained something even though she felt she lost so much. Elizabeth, too, asserted that “sign language has got really good parts of my life”. She uses sign language in her job, which she finds rewarding. She also saw the nature of her job as something still tied to deafness.  And now I think I'm working on that a lot now, is that I'm trying to find out who I am. So I'm 25  and then I think from 20 to 25, right now, like who am I and because I'm so like focused on the  deaf community, and that's not me, and I know it's not me, and I gotta get out of it. And then I  look at my job and I'm like special ed assistant [laughs]. I can't get out of it! [laughs] Elizabeth is unable and perhaps also unwilling to fully escape deafness; it is entrenched in who she is and how she became who she is. In her phrasing that sign language has “got” her, she reveals the captive state of her identity to deafness. It is interesting, too, that in the above passage, she talked about being 25 years old, but chose to focus on the ages of 20 to 25 rather than 25 to 30 in discussing her sense of self. On one hand, this could be a reflection of the social pull towards youth. However, I think that this is an indication that Elizabeth continues to look back more than look forward. She needs to “get out” of the deaf community in order to get out of her past.  For Celeste, boundaries are strange because she, the hearing sibling, seems to have more connections with the deaf community than her deaf sister. Celeste described herself as being much more involved in the deaf community and having more deaf friends than her deaf sister. She recognized the irony in this positioning, laughingly stating, “I know, it's kind of weird.” It is interesting how involved Celeste is in deafness when contrasted with how “against the deaf community” her sister is.  She always says, “Well, deaf people are weird.” That what she always used to say. And I'd be  like, “Well, you're deaf.” [laughs] In Celeste's eyes, her sister seems to delineate clear boundaries between herself and other deaf people, rejecting the idea that she should be aligned with them by virtue of one aspect of her identity. But for Celeste, her sister's rejection of deafness runs contrary to the idea of a natural group identity.   63 Constancy and Change Across Time  Because the story form is so familiar to us, we are drawn to telling and understanding stories in a way that respects some of its tenets – notably the notion of change. One can argue that some change is required of all stories in order for them to be recognized as stories. Stories cannot be static or they cease to be stories, thus the “hero” must undergo some change. People are faced with a choice of how to position themselves along a spectrum of no change at all to dynamic change. The interesting thing is how people navigate this dilemma in their narratives by making coherent their past and their present – how the first led to the latter, how life events are linked. In this way, they can articulate how their journey has progressed but by using a thread of sameness throughout – a balance of continuity and discontinuity. Change must also fit in thematically. The script running throughout the participants' stories is that having a deaf sibling has shaped the participants' identities and life paths. The events that occur, the experiences they have, owe a great deal to this aspect of their identity.  For Bridget and Celeste, deafness is not just a trait of their sibling, but a defining characteristic of themselves, as well. In Bridget's words, it is “a big part of” who she is and has had “a big impact” on who she is today. She even attributed the type of life she has had to her sister, saying, “Pretty cool life I've had, for sure, because of her.” When I opened up my interview with Celeste by asking what her opinion of the topic was, she immediately talked about this causal relationship between deafness and her life path.  I thought [the topic] was interesting because in my case, having a sister that has been deaf has  really influenced my life a lot because it's, because it's created the path with which I'm going for  a career and all that kind of stuff, so it's something that I was really interested in as soon as I  saw it. Having a deaf sister has also shaped her identity. She stated that if she had not had a deaf sister, “I'd be a completely different person. It's really shaped who I am.” She later used the phrasing of “the ball got rolling” to describe how her relationship with her sister led to the experiences she had and the choices   64 she made. It is a great visual metaphor, the notion of this ball rolling and rolling, picking up speed, increasing in size like a snowball. There's also a certain fatalism to the metaphor, because how do you stop the ball once it starts rolling? In a similar vein, Mabel described her siblings' deafness as indirectly shaping her own life through societal conditions and parenting practices.  I don't think me necessarily being hearing and them being deaf was the issue, the thing that  caused me to internalize and be shy and feel less valuable was my sister - I don't think it had  anything to do with our differences and the fact that I could hear and she couldn't. It totally was  how we were viewed by society and how my mom, what my mom gave to each of us  differently. At the very end of her story, Mabel summarized, “I am who I am because of how I was and maybe that, maybe it would've been worse if you know we were all hearing or all deaf.” She connects her past self (“how I was”) and present self (“who I am”) with a very specific aspect of her and her siblings' identities – being hearing or deaf. This identify category has primacy in her life story. Mabel sent me an email later that day in order for her to better wrap up her story, carving a summary and an ending that it seems she felt was missing from her oral telling. In her email, she imbues her life story with purpose and meaning, that all the events of her life, everything she went through, has coherence – they do not make sense in and of themselves; they only make sense when seen together.  I feel that I had a very good childhood, that my Mom did the best she could do and that having a  deaf brother and sister made me a more open-minded, compassionate, accepting and tolerant  person. So those are all very good qualities that I may not have learned if I didn't have deaf  siblings. God gave me hearing but my deaf siblings taught me to listen with my heart. For Mabel, this reconciliation of the present with the past enables her to live without bitterness or resentment. There was still a strong sense of loss that ran throughout her narrative, but this was balanced with the idea that there were gains from her losses, as well. Elizabeth, too, confirmed this idea of purpose - that everything she went through had meaning and that her suffering was not for nothing,   65 but ultimately resulted in a self that she could take pride in.  Elizabeth: But I don't think I would change anything. I think...  Arby: You feel like it's been like - everything has led up to what it is sort of thing? Like it had a  purpose?  Elizabeth: Yeah. I think I grew up really fast. I think you know I'm - it's made me want to find  out who I was. [laughs] Yeah. It's pushed me to that. And now I think I've got a lot of  qualities that not a lot of people have. [emphasis added] Most people talk about finding out who they are, but Elizabeth articulated the knowledge that in order to find out who she is, she needs to find out who she was. This may have been a simple slip of wording, but her dissection of her past throughout her story indicates otherwise. Her exploration of the causal relationship between her childhood and her present issues is recognized as key to understanding her story. Causality also emerged in Linden's story, when she talked of how she re-evaluated her brother's deafness as something positive for both him and herself.  I always just, I always wished that my brother could hear. Like that's if it was something that I  wished for in the relationship with my brother, it'd just be like, yeah, yeah I wish he could hear.  Now, like I, I think I've changed that, like I don't - I'm really glad for the situation that he's in  'cause it's given him a new experience in life, it's given me a really, really different path in life,  like I wouldn't, I wouldn't be here. I could be in Vancouver but I wouldn't be interpreting. I  wouldn't be doing a lot of the things that I'm doing. Um, I wouldn't know my boyfriend 'cause I  went to VCC, which is where I met him, which is where the program that I took, which is my  brother's deaf. So. [emphasis added] She explicitly links the major aspects of her life – relationship, career, family – using the phrase of “which is” three times in succession. The refrain is almost poetic in its structure, the “so” at the end a summary punctuation, emphasizing the causality established. Linden positions her whole life trajectory as launching from her brother's deafness. In a later statement, she asserted, “I think with being an   66 interpreter and stuff like that, signing is more a part of my life than just having a brother who's deaf.” Linden is voicing both continuity and discontinuity – that signing has been a constant throughout her life, but has grown beyond the connection to her brother. Her connection to deafness has matured. It has become a thing of choice (agency) more than something she was born into (situational). Val was more tentative about how much of her life path is shaped by her relationship with her sister. On the one hand, she talked about being “ignorant” in “not realizing that my experience with my sister was guiding my career path”. But she also clarified that there were other variables at play – that her personality (practical) and interests (helping people, working with children) were maybe just as much responsible for the career she chose. Her sister's influence on herself and her life cannot be accurately measured.  It's so hard to know how much that shapes you as a person, like it's a part of your life every  single day. For most of your life. Like it's gonna be a pretty profound, have a pretty profound  effect on you. So really knowing how much of me was shaped by that, I have no idea. Val explained how her relationship with her sister is slowly changing to more of a sister-sister relationship and less of a mother-daughter relationship than it has been in the past. That is her hope for the future – that it will continue to progress more and more in this direction. But she recognized that her sister's deafness is part of why their relationship is the way it is, so in some sense, there are parts of their relationship that will never change.  I don't want to make her feel like I think about her differently than I would if she wasn't deaf.  But the bottom line is, I do....She is deaf, like we probably will never have a relationship where  I act like she wasn't deaf because she is. Agency  The identity dimension of agency is intertwined with the identity dimension of constancy and change across time because establishing continuity and discontinuity in their stories is a way for storytellers to take agency for themselves. By establishing a pattern of causality to the events in their lives, they weave a tapestry that is not haphazard but harmonious – something that makes sense, that is   67 explicable. Bamberg (2012) asserts that people position themselves as “agents” - in control of their lives – or as “undergoers” - victims of forces out of their control. The first group see themselves as making things happen, the latter group as having things happen to them. Some of the participants portrayed themselves as agents while others saw themselves as undergoers for most of their lives, who are transitioning into agents. For the latter, the act of telling their story was particularly important to helping achieve this transition.  Celeste and Linden positioned themselves as being in the driver's seat, while pointing to their sibling as more of a passenger, content to go where the ride takes them. Celeste's sister would even let herself be driven to an undesired destination, whereas Celeste would immediately change the GPS directions.  She's the kind of person where somebody will tell her, "You can't go into audiology 'cause  you're deaf" and she'll be like, "Well, then I can't." Whereas I'm like, "Why don't you talk to  people? Why don't you figure things out?" And you work around it. Again, I'm always trying to  empower her to, to just do it. There's nothing that should be holding you back because you're  deaf. Whereas she sees a lot of barriers and then she just freezes. Like Celeste, Linden also described her sibling as someone who is prone to taking on a victim role – one of little agency. In contrast, Linden saw herself as someone who needs to guide the action, rather than being guided by it. She identified herself as a “fixer” and her brother as a “leaf”. Unlike her brother, she cannot “go with the flow” but needs to have direction, “something to aim for”.  There are some interesting patterns related to age, distance, and agency. Linden talked about her father being a controlling person and her decision to move away after high school being partly a response to that. Like many young people entering their twenties, she sought to escape the control of another (usually a parental figure) in order to establish control over herself. When asked to explain more about what her father's controlling behaviour was, Linden said “stuff like defining me” and then went on to explain how her father would always accuse her of lying. Participation in this study was   68 participation in telling a story in a venue where that story was not only accepted, but explicitly desired. It could then be seen partly as a way to take back definition of herself. Five of the six participants were in their twenties, a time when people are typically seen as trying to achieve a measure of independence and adulthood. Two of the participants – Linden and Val – had moved from their hometown in a different province in the last few years. Bridget had relocated within the province in the last year. Many of the participants were also in or had just completed an education program related to deafness (Val, Linden, Bridget, Celeste). Linden and Bridget both went through an interpreting program and talked about having their eyes opened to oppressive hearing practices they had been perpetuating in the past. Val recognized explicitly that her audiology program had prompted reflection on the role of her sister in her life. Young adulthood is typically a time when people seek to redefine themselves. Transitions at that stage such as post-secondary education and relocation can be associated with that redefinition. Moving away from the family of origin, for example, can be seen as a way to move away from how one is defined within that setting. The fact that the majority of the participants were in their early twenties and that half had set spatial boundaries between the place of their childhood and their current location may be a coincidence, but it may also tie in to the fact that at a time when we seek to establish ourselves, what better complementary aid than stories? For the stories we tell about ourselves, as has been argued, are a way we create ourselves – who we are, who we were, and who we wish to be.  Although Mabel does not fit into this age group, she seems out of all of the participants to be most in need of the storytelling mechanism to gain agency. In our debriefing, she used the word “cathartic” to describe the experience of telling the story and shared that she felt less alone after having told her story. Much of our conversation was marked by her tentativeness, often searching for confirmation from the interviewer. This may seem to indicate a deep-seated desire for her story to be heard and understood. Her use of deintensifiers in the narrative may also point to feelings of helplessness, which are brought to the surface when describing painful aspects of her childhood.  Ok, so um I'm the middle child of um three kids and if I'm not going in the right direction, you   69  can just tell me. Just stop me, ok? Later on, she stopped to ask again if she was going in the right direction and if what she was saying was “ok”. At another point, Mabel asked permission to be “completely honest”, implying that perhaps she has hitherto felt an unspoken pressure to be less than fully revealing – to herself, possibly, as well as to others – about her story. Later on, she used this wording of “honest” again to talk about how she may have repressed or blocked a lot of memories of her childhood. With a few different anecdotes, she threw in an evaluative clause, warning “this doesn't sound nice”, again implicitly reinforcing the right previously given to be honest, to tell the nitty-gritty, to tell the story as she knows it and not as how others might want it to be told or heard. She has spent most of her life in a passive role and seeks to take on more of an agent role.  Mabel and Elizabeth's stories are very similar, both expressing a childhood of not being heard, lacking a strong sense of self, and feeling as though they did not belong. They described their childhood selves as timid, quiet, and invisible – in short, lacking any sense of agency. This may be why, out of all the narrators, they presented the strongest sense of pursuing agency through the act of narration. For them, Didion's (1979) assertion that stories are necessary to living rings true. Elizabeth often said that her mother did not hear her, and thus telling her story is a way of being heard.  I've always been very open with everything 'cause I always think because I closed it in so much  that I never wanted to close it all in so I've always been so open. Everything goes, like if anyone  ever asks me a question, I'm so open because I just, I don't want to keep it all inside again and  go crazy. Elizabeth is articulating the idea that storytelling, for her, is fundamentally about holding her own, about maintaining her identity. To speak and be heard is to actively counter becoming lost in quiet invisibility, as she was lost in her childhood. Elizabeth also wrote and illustrated a story for school in grade 7 called “All Alone” about her experience camping with her brother.  There's a little group of people, stick men, the people that walked away from me. Yeah,   70  and then I think at the end of the story I sat down [my brother] and said - and I never did this  actually - but in the story, I sat [him] down and said you know it really hurts my feelings  when you go off with your friends and don't include me. And then in the story, [he] included  me and we all went off together. As a child, Elizabeth tried to write herself a different story, with the ending she wished for in real life. As an adult, she continues to tell her story, but with the purpose of eventually fashioning in her real life a happy ending.    71 Chapter 5 – Discussion   The analysis has revealed a number of themes, which are discussed here for their implications. Specifically, the findings are situated within the current research, with a focus on how they support or contradict certain theoretical assumptions. This leads to a discussion of what kind of future research might be helpful to this field of study and different angles to take in research design. This study has also raised some salient questions to be asked of social work and social workers in this field, particularly as to gaps in services and programs and how these gaps could be filled. Before undertaking these discussions, however, the study has shed some light on a few considerations to take into account, which are presented first. Considerations  The first major consideration that arose from analysis was the nature of the sample. Although it was noted in the section on methods that sampling cannot be judged as representative but only as evocative, I find it worthwhile to emphasize again that this sample may not be representative of hearing siblings of deaf persons. Self-selection and the venues through which the study was promoted (WIDHH, DeafBC, WAVLI) resulted in the majority of participants being closely affiliated with the deaf community or with deaf issues or with having their career tied to deafness, or all of the above. Participants also verbalized this recognition. Bridget stated that “our family's kind of rare” in that her mother was an advocate for deaf rights. Mabel also noted that her mom was an “anomaly” in her parenting style of a deaf child, which did not reflect the dominant disability lens of that era but more of an empowering deaf community lens. Linden said, “I know it's a pretty unique experience for my brother to have like family members that sign. To have a family member that's an interpreter, like that's really, really rare.” And yet in my small sample, I have three interpreters. It is highly unlikely that siblings of deaf persons all gravitate towards being interpreters or audiologists, or that all interpreters and audiologists have a relative who is deaf. Two participants had careers that were not directly related to deafness, but they were also the ones who reported the highest level of deaf saturation growing up.   72 Clearly, there is a missing group in our sample, one that we have no data on – hearing siblings of deaf adults who have no close affiliation to the deaf community, either in their childhood or in their careers. Thus, this study has little to say about the effects on identity of having a deaf sibling for that group.  Another major consideration lies in my involvement in the study. Use of self was touched upon in the introduction, but the effect of my involvement became clearer in the analysis. Some of my involvement helped facilitate a conversational environment. Participants and I often laughed at the same time because of our shared understanding of a sibling experience. One of the participants – Linden – also tended to sign when relaying to me conversations between her and her brother. In this, we were able to avoid the 'lost in translation' problem because the subtleties of the conversation did not get lost. Linden was able to tell her story in all the languages of that story. I think there was a level of comfort overall in telling the story to an insider. That level of comfort also sometimes meant that I made some major assumptions, which were reflected in the interviews. I noticed in my questions that I showed some of my biases, such as that there would be frustrations or worries about a sibling's future and that there would be meaningful differences in how parents treated their children. Sometimes, these topics came up organically, but I often led participants to these topics. On these topics, most participants were of like mind. But where participants negated my assumptions, I would continue to probe out of the belief that if I probed deep enough, I would find the answers I expected. This, of course, was not always the case. One example is my discussion with Bridget about her sister attending Gallaudet University, a university for deaf students. Bridget was optimistic about her sister's future. I relayed some aspects of Gallaudet that my brother found oppressive and talked about my brother's poor employment opportunities after graduation. Despite my hedging to get at any feelings of anxiety, Bridget was resolutely positive that her sister would succeed in her education and career goals. Through transcribing, I was able to get a better sense of my biases, but it is inevitable that my “interpretation relies on a variety of implicit assumptions and ad hoc hypotheses” (Mishler, 1991, p. 65). My predominant emotions around my brother are worry and frustration, which I believe impacted   73 the direction I went in the analysis.  Lastly, stories are circulated within a particular group. Each participant directly shared their story with me, but they also knew that the paper would be shared with the other participants – the particular circulation group was hearing siblings of deaf persons. How much this bore on their stories, it is hard to know, but I speculate that while there are many things one might share freely with the same members of a group, there are even more things that one does not share with those same group members. The deaf community is small – some participants mentioned this, as well – and for those who were well-affiliated with the deaf community, either through their jobs or their families, this may have been a very real concern, despite assurances of confidentiality. There is the possibility that participants might have felt constrained to share stories that would respect the beliefs of the deaf community. In this regard, they may have brought certain things to the forefront and minimized other aspects of their experiences or feelings. Situating the Findings Within Current Research  Sibling Theories. Some of the ways in which the findings are situated within theories on sibling dynamics have already been indicated. De-identification and its attendant processes, in particular, have been of some note. These processes were considered fairly important to many of the stories, although the way in which these processes work sometimes conformed to research, but sometimes were at odds with it. Gender, for instance, has been thought to be a factor. Social learning and de-identification are both thought to be stronger where both persons in the sibling dyad are of the same gender. This idea bears out in Mabel's case, as her point of comparison lay with her sister rather than her brother. However, Elizabeth had a deaf brother, but she presented one of the strongest cases of de-identification out of all the participants. At the same, time, this de-identification does not seem to have lessened her feelings of resentment or envy, as de-identification theory posits. The direction of influence or comparison is also an interesting departure from most of the research, which tends to measure younger siblings' perceptions. All the hearing siblings in this study were the elder in the hearing-sibling dyad,   74 except for Mabel, who also had an older brother. However, she mostly compared downward – to her younger sister. This may also be because her brother was absent from much of her formative life as he attended a boarding school. From the stories, it seems that de-identification is very important for older siblings, as Whiteman and Chistiansen (2008) have posited. De-identification also occurred in conjunction with social comparison, as has been found in Whiteman et al.'s (2007) study. Where these occurred together, there were very little feelings of resentment or envy. Perhaps where these work in concert, they do not cancel each other out as Whiteman et al. (2007) have tentatively suggested, but complement each other.  As some studies have suggested, birth order theory does not seem to be relevant to identity development. Although some participants themselves alluded to their self-recognition of birth order on their identity development (Val talked about already having an identity because of being the eldest, and Bridget talked about having middle child syndrome), there was no consistent pattern across the participants that birth order was of particular importance in this respect. Most of the participants were the eldest child and they voiced different experiences based on parenting styles, their personality, and other variables. In their presentation of themselves, they also did not all fit the authoritative figure that Sulloway (1996) described, nor the control-fixated person that Adler described. If birth order does have any sort of influence, it would need to take in a great number of variables in the analysis to place this influence in context.  Theory of Mind was an interesting lens from which to examine some of the participants' stories. A few participants talked about how they had signed so much as children that they had less opportunity to talk. Elizabeth, in particular, had a deaf nanny, as well as a deaf brother, so she had to interpret for both. She said that because she had no one really to talk to, her oral and written language development were behind. In her childhood and adolescence, she “didn't know how to really talk” but beginning at age 19, started talking a lot, which she continues to do. Elizabeth's experience supports ToM's assertion that siblings are a practice arena for the development of skills. It is difficult, though, to conclude how   75 having a deaf sibling impacted on Elizabeth's acquisition of ToM, since ToM primarily measures this impact in childhood. It might be worthwhile to conduct a study measuring this in toddlers with deaf siblings. The impact could thus be more adequately measured.  Siblings of Persons with Disabilities. The research on siblings of persons with disabilities is vast and varied. Where this study fits in is the diversity of its participants and their stories. In terms of the effects of having a sibling born with a special circumstance, the study bore out the research in general which concludes both positive and negative effects. All of the participants had very positive things to say about the impact of having a deaf sibling on their lives. Mabel said it made her a more compassionate person. Bridget noted that it has given her great experiences. Elizabeth said if not for having a deaf sibling, she would never have met some really wonderful people in her life. As in Stalker's (2003) study, where most of the participants did not report any restrictions on activities, the participants here indicated having the opportunity to participate in even more activities, such as deaf camp, because of their sibling. But the participants also pointed out the detrimental effects of this relationship. Mabel and Elizabeth, in particular, discussed receiving less parental attention and the impact on their self-esteem. This echoes 18 of the participants in Stalker's (2003) study, who felt they had 'lost out' in terms of time and affection from parents. As with some of the participants in Stalker's (2003) study, Val exhibited a high level of anxiety about her sister. However, she is the anomaly – most of the siblings in the study demonstrated little, if any, anxiety for their sibling.  In the area of attitudes towards siblings, all the participants demonstrated great love and affection for their sibling. Most of them were very close to their sibling, both in age and relationship. As with the siblings in Stalker's (2003) study, they described their siblings as like anybody else and of having a sibling relationship like any other. This included being protective of a younger sibling, fighting with siblings, and having fun playing with siblings. Some participants contrasted their view of and attitude towards their siblings with the views of others outside the family, a recognition that others defined their siblings differently. Fighting with one's sibling could become, to an outsider, picking on   76 the deaf child, as Linden relayed. Val also talked about how her sister is viewed differently by other people because she is different when she is with others. Participants also talked about the support given by parents, but unlike in Orsmond et al.'s (2009) study, not all cases where parents were supportive of the deaf child were associated with positive affect in the sibling relationship. Granted, there was positive affect in all of the adult sibling relationships, but in discussing their childhood relationships, some of the participants were most envious when parental support of their deaf sibling was the strongest. Orsmond et al.'s (2009) study was also based on the idea that parental support took away some of the burden that siblings might have felt had they felt solely responsible for their sibling. This idea of caregiver burden was not apparent in any of the participant stories, which points to a fundamental difference in issues of siblings of deaf persons and siblings of persons with disabilities.  Siblings of Deaf Persons. There is only a scattering of research on siblings of deaf persons, and most of it tends to be with small sample groups, similar to this study. There are two particular studies on which this study has some bearing. Like Tattersall and Young's (2003) study, the research done here was of a retrospective nature. Although psychic conflict was not the focal point of my findings, the data points to common themes. There were, for instance, some findings of emotional ambivalence regarding the positive and negative effects of deafness, both in their lives and in their siblings' lives. Although all the participants did not wish that their sibling was hearing, some reported having this wish when they were children. One participant even had the opposite wish as a child – that she was deaf rather than hearing. As with the majority of the participants in Tattersall and Young's (2003) study, most of the participants in this study had careers related to deafness. However, they had greater awareness of this connection than the participants in Tattersall and Young's (2003) study, with five reporting that their sibling's deafness had influenced their career choice.  Because this study had no comparison group, it is difficult to ascertain how the emotional well- being of hearing siblings of deaf persons might have differed from siblings of persons with typical hearing, as was the focus of Raghuraman's (2008) study. That study was also done with children and   77 did not differentiate between deafness and being hard-of-hearing. That said, there are some differences worth noting. In the present study, some negative effects of having a deaf sibling were identified. As well, the data generated does not support the idea that greater severity in hearing loss is associated with fewer behavioural problems. Three of the participants had siblings who signed and had little to no orality; two of the participants had siblings whose preferred mode of communication was oral language; one participant's sibling mainly signed but also had some orality. The first group reported more problems in childhood and adolescence than the latter groups. As speculated, this may have been connected to immersion in deaf culture and the requirements of interpreting for one's sibling. Future Directions for Research  There continues to be a need for more research that examines the experiences and perspectives of siblings of deaf persons. There are an inadequate number of studies for making even the most broad of generalizations or conclusions about this group. Most of the research has been qualitative in nature, such as the study done here, and could benefit from a balance in quantitative research. Quantitative research may also be able to reach greater numbers of siblings, as most studies so far have had small sample groups. That said, qualitative research is still needed to delve into how people understand their positioning. In particular, more research using a narrative approach and attending to form in the analysis could be useful in examining unconscious aspects of identity. Both holistic-form analysis and categorical-form analysis could draw out some of the emotional truths in sibling stories.  The study has also drawn attention to some gaps in research. In particular, I echo Whiteman and Christiansen's (2008) call for more research on how de-identification works in older siblings, and also for conducting research that measures both de-identification and social learning processes at the same time. These processes do seem to be important to how siblings navigate their identities, but how they work is indeterminate. The age group of siblings under research have also tended to be limited to childhood, adolescence, and early adulthood. While this study did not specify any age range above 18 years old, the majority of the sample ended up being in their twenties. Research on siblings in middle   78 adulthood is sadly lacking. Research that does exist for that age group tends to be focused on caregiving, rather than on a retrospective evaluation of the sibling relationship.  In terms of the particular group of interest – hearing siblings of deaf persons – it has already been noted that this study's sample was likely not representative of the group as a whole. This is not detrimental to the purposes of this study, but does raise the issue of diversity among this broad group. In particular, the nature of the language that deaf siblings use, whether ASL or oral, may have significant implications for the sibling relationship. A study that compares siblings of both groups could help deduce what, if any, implications. One particular subgroup – siblings of cochlear implant users – is unique in the way in which its members are situated between the deaf and the hearing world. The aspect of choice inherent in cochlear implantation may spell out a different emotional world than that of persons whose siblings were not implanted. Siblings of deaf persons are not a homogenous group, and future research in this area would benefit from plotting out the differences in how members of this group perceive themselves, their siblings, and the sibling relationship. Implications for Social Work Practice  The participants' stories drew indirect attention to the socially constructed nature of deafness and to social justice issues related to deafness. The actions of some of the parents in the stories can be seen as a response to major social inequities in the treatment of deaf persons. Because deaf people are marginalized in the larger society, parents compensated by giving the deaf child more attention. They tried to build a strong sense of self out of the instinctive realization that this particular child needs everything it can to survive in a world hostile or simply indifferent to its existence. Thus, any attempt to address hearing sibling issues must also prioritize raising consciousness of deaf issues and changing social, political and economic structures that discriminate against deaf people. Because social workers have a grounding in anti-oppressive practice, they could be instrumental in this regard, particularly through conducting and disseminating research and through policy recommendations.  Lack of resources for families with a deaf child was one of the main oppressive structures that   79 participants identified or implied in their stories. Half of the participants grew up in small towns. While some of the positives of a small town atmosphere were voiced, such as having a supportive community base, participants also talked about how there were few resources for deaf people. Val said that her family chose cochlear implantation to give her sister access to the hearing world, but also noted that there was very little available for deaf people – in terms of access to programs and in terms of access to other deaf people. In her feedback, Val emphasized that there was also very little available for persons with cochlear implants, but speculated that what was available for deaf persons may not have been enough for her parents to think there was any other “viable option” than cochlear implantation. Bridget talked about how her mother would have to make frequent trips from their small city to Vancouver in order to access resources. Elizabeth and Mabel, who did not grow up in small towns, had mothers who were deeply involved in advocacy activities in order to ameliorate the situation regarding lack of resources for deaf people.  The deficit in education for deaf persons was also mentioned as part of the resource problem. Val described at great length the frustrations encountered in the education system with speech language therapists and inappropriate programs. Only once a year was the speech language therapist able to see her sister. Linden explained the unfairness of an education program that based its curriculum for deaf children on a curriculum for children who hear English all the time. She also said that her brother was denied entrance into a college program because they do not accept deaf people, and was not accepted into another program because of the unavailability of interpreters. Bridget and Elizabeth did mention that their siblings were able to get government funding for their education, but described their mothers as integral to finding and applying for these programs. There was the sense that one had to be particularly resourceful and persistent in order to achieve gains. One of the main tasks of social workers is to help navigate people through complicated systems, systems that often seem to be exclusionary. Social workers not only could help deaf families navigate the systems through which to access resources, they also need to be active in advocacy to help families create the programs they   80 need.  Lack of resources was not confined to their siblings, but also extended to the participants themselves. Participants mentioned the need for sibling support groups and other supports for siblings. Some participants felt alone and isolated in their youth. Mabel relayed not having anybody to talk to who was in a similar situation. Elizabeth wanted a group that was just for her and other siblings, a place where she could feel normal. Elizabeth even specifically talked about having a lifelong dream of running groups just for siblings of deaf persons. Having sibling groups more readily available might have helped these participants develop their voice with peers in a similar situation. Social workers could advocate for the creation of these groups, and those trained in group work could help fill this particular gap in resources. Conclusion  The findings from this study have things to say about worth and non-worth – what categories of being in our society are considered of worth, what aspects of identity have value. The undertaking of the participants in telling their stories was one of seeking to hold their own in the face of difficult conditions. By that, I mean that in order for a sibling to understand and ascribe value to her own identity, she also had to understand and ascribe value to her sibling's identity. Because participants' identities are intertwined with that of their siblings, the task was two-fold – to develop an understanding of one's own identity, one has to develop an understanding of a sibling's. The act of storytelling, as a co-construction between myself and the participants, can be interpreted in a literal and metaphorical sense as the act of gaining one's voice and having that voice be heard. The voices heard here tell of a relationship that has had a significant impact on their lives and that continues to shape part of who they are and how they fit in the world.     81 References Aksoy, A. B., & Bercin Yildirim, G. (2008). A study of the relationships and acknowledgement of non-  disabled children with disabled siblings. Education Sciences: Theory and Practice, 8(3), 769-  779. Arendt, H. (1958). The human condition. Chicago: University of Chicago Press. Bamberg, M. (2012). Narrative practice and identity navigation. In J. A. Holstein & J. F. Gubrium  (Eds.). 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M., & Killoren, S. E. (2009). Mechanisms of sibling socialization  in normative family development. In L. Kramer & K. J. Conger (Eds.). Siblings as  agents of socialization (pp. 29–43). San Francisco: Jossey-Bass. Whiteman, S. D., & Christiansen, A. (2008). Processes of sibling influence in adolescence:  Individual and family correlates. Family Relations, 57(1), 24–34.   86 Whiteman, S. D., McHale, S. M., & Crouter, A. C. (2007). Competing processes of sibling influence:  observational learning and sibling deidentification. Social Development, 16, 642–661. Whiteman, S., McHale, S., & Soli, A. (2011). Theoretical perspectives on sibling relationships. Journal  of Family Theory and Review, 3, 124-139. doi: 10.1111/j.1756-2589.2011.00087.x Wong, T., Branje, S., VanderValk, I., Hawk, S., & Meeus, W. (2010). The role of siblings in identity  development in adolescence and emerging adulthood. Journal of Adolescence, 33, 673-682. Woolfe, T., Want, S., & Siegal, M. (2002). Signposts to development: Theory of mind in deaf children.  Child Development, 73(3), 768-778. Woolfe, T., Want, S., & Siegal, M. (2003). Siblings and theory of mind in deaf native signing children.  Journal of Deaf Studies and Deaf Education, 8(3), 340-347. doi: 10.1093/deafed/eng023 Young, S. (2007). The forgotten siblings. ANZJFT, 28(1), 21-27.  NEGOTIATING THE HEARING-DEAF SIBLING RELATIONSHIP  87 A p p e n d i x  A T H E  U N I V E R S I T Y  O F  B R I T I S H  C O L U M B I A     RESEARCH PARTICIPANTS NEEDED  Do you have a brother or sister who is deaf?   I am a Master of Social Work student at the University of British Columbia. For my thesis, I am conducting a study entitled “Negotiating the Hearing-Deaf Sibling Relationship Across the Life Span”. I am interested in the stories of siblings of deaf persons.  You are eligible to participate in this study if: • You have a sibling who is pre-lingually deaf, and is in the severe to profound range of deafness • You are over 18 years old • You live in the Lower Mainland of BC • You speak and understand English • You are willing to provide up to 2 hours of your time to be interviewed  You will be given the option to review a written analysis of the study’s finding. Total maximum time commitment (including review of the analysis) will not exceed 4 hours.  This study is being supervised by Elizabeth Jones, Instructor, UBC School of Social Work.   Interested? Please contact: Arby Yeo, MSW student       School of Social Work 2080 West Mall Vancouver, B.C. Canada V6T 1Z2 Tel:  (604) 822-2255     Fax:  (604) 822-8656 www.socialwork.ubc.ca NEGOTIATING THE HEARING-DEAF SIBLING RELATIONSHIP  88 A p p e n d i x  B T H E  U N I V E R S I T Y  O F  B R I T I S H  C O L U M B I A      Consent Form  Negotiating the Hearing-Deaf Sibling Relationship Across the Life Span   Principal Investigator: Elizabeth Jones, Instructor, UBC School of Social Work  Co-Investigator: Arby Yeo, MSW Student, School of Social Work, University of British Columbia  This research is being conducted as a requirement for a thesis, a semi-public document. You will be informed regarding the use of and access to the information provided. All identifying information will be removed from information collected during interviews.  Purpose The purpose of this study is to learn the stories of siblings of deaf persons.  Study Procedures You will be asked to participate in a one to two hour interview. In the interview you will be asked to share your story of as a sibling of a deaf person. The interview will be conducted by Arby Yeo, co- investigator. You will also be asked to review the written analysis of the interview. This review is optional. Including the optional review, maximum total time commitment would not exceed four hours.  Confidentiality Your identity will be kept confidential. Any identifying information will be removed from interview transcripts. Audiotapes and written transcripts of the interviews will be kept in a locked filing cabinet. Any study documents stored on the computer will be file-protected. Participants will not be identified by name in any reports of the completed study.  Risks The research study deals with a sensitive topic. While no risks are anticipated, I, Arby Yeo, will attempt to alleviate any potential risks to you by ensuring that you are aware of your right to stop the interview at any point if you become distressed or are unable to continue.  Remuneration/Compensation School of Social Work 2080 West Mall Vancouver, B.C. Canada V6T 1Z2 Tel:  (604) 822-2255     Fax:  (604) 822-8656 www.socialwork.ubc.ca NEGOTIATING THE HEARING-DEAF SIBLING RELATIONSHIP  89 No remuneration or compensation is offered for participation in the study.  Contact for information about the study For further information regarding this study, you may contact the investigators named above.  Contact for concerns about the rights of research participants Any concerns about your rights or treatment as a participant may be directed to the Research Subject Information Line in the UBC Office of Research Services at the University of British Columbia at 604- 822-8598.  Consent Your participation in the study is entirely voluntary and you may refuse to participate or withdraw from the study at any time without consequence.  Your signature below indicates that you have received a copy of this consent form for your own records.  Your signature indicates that you consent to participate in this study.    Signature:  __________________________________________________  Printed Name:  __________________________________________________  Date:   __________________________________________________                 


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