As most genealogists would say, studying your family history begins with you. Knowing where you come from or about your grandparents or parents and their siblings’ names, birth and death dates give us a reference for belongingness. Out of curiosity, many of us search for details about family members rather than merely accepting the facts of our ancestry. We are that inquisitive, striving to get the unusual, interesting tidbits about our family members’ attributes and why they did what they did. Similar physical and personality traits of our ancestors either amuse or annoy us. By asking questions or engaging in conversations about events in our lives with family members or unrelated individuals, we often discover there are different perceptions to a memory that happened so long ago. Yet we are baffled at the question: Is it worth rehashing the past? For some of us the truth prevails, while for others, moving forward unknowingly may be the safest way. However, family is still everything to us, whether we readily admit it or not.
When we choose to talk about our siblings, we do it out of a sense of purpose: they have been and continue to be part of our lives. Sharing stories about them also confirms we are ready to reveal a deeper intimacy to our spouses, children, friends, acquaintances or service providers for how it defines us as a sibling in our family. Daily conversations about our families may be a common topic for discussion, but for some people it enters unchartered territory they would rather not talk about. Still there exists an untapped feeling inside of us which often cannot be explained—unless you are a sibling. Being a sibling is an emotional attachment that has grown on us, marking it as an experience that will always be part of us. Whether it is a birth of a sibling, adoption or a foster sibling, the sibling relationship is derived from hourly, daily, weekly, monthly, and accumulated years, of interactions. Building relationships is complex, especially when all we have is words, gestures and non-verbal forms of communication to create them in the first place. As time passes, our interactions come to form habitual ways that may or may not foster trust, respect and admiration for one another as a sibling. Ultimately however, we expect our siblings to know us as well as we think we know them.
Often when people ask if we are close with our siblings, it is their way of assessing the degree of intimacy in our lives. When this occurs, the boundaries expand from being private about ourselves to sharing personal information about ourselves to people we meet, always checking whether it’s safe. Some siblings share stories about their siblings as a means of seeking mutual understanding, even including their harmless bickering. Others describe how they and their siblings share a common enemy, creating a co-dependency; there is a survivor’s need in their sibling bond. And there are siblings who describe their closeness as middling or so-so, not close, but not distant either. Some define sibling closeness by creating an overall synthesized experience, interpreted or possibly misinterpreted into a single story. In contrast, our approach is to emphasize that sibling relationships are fluid and ever evolving throughout our lives. By looking at a continuum of intensities of sibling closeness ranging from intimate to hostile, it can be a way to take a step back and reassess our feelings about our sibling (Cicirelli 1995, Gold 1989). This analysis may lead us to jump start an interaction with our siblings. For some siblings, the relationship may have taken a turn for the worse, resulting in a complete halt, while for others, connecting or reconnecting to a sibling is seen as a worthwhile pursuit, depending on changing circumstances.
The single events as told to us by the people we interviewed portray multiple angles using different genres: one person’s narrative, fictionalized conversations based on the actual events in siblings’ lives, and anecdotal vignettes directly from the interviews. The genres were written to make it accessible to the multiple levels of linguistic and academic skills among prospective readers. Stories were specifically designed as an “easy read” to clearly identify the challenges enmeshed in sibling relationships and to give readers the opportunity to see that they are not alone—that other siblings have similar experiences. Simultaneously, we created a balance honoring the differing perspectives of siblings who live as deaf and hearing individuals. While it may appear that hearing status is the defining attribute, instead we’ve identified subtle distinctions emerging in the behavior of siblings surrounding how they adapt to one another, either inhibiting or nurturing sibling bonds. During the process of analyzing the sibling relationships between deaf and hearing adults, as researchers we present the deaf perspective, rarely seen or heard in many scholarly studies about sibling relations. For decades, traditional studies published the hearing perspectives. Deaf and hearing perspectives are not oppositional perspectives; instead they are simply the perspectives of how the person encountered the experience.
As authors our objective was to acknowledge the deaf and hearing experience while simultaneously presenting alternative possibilities that these experiences, by their very nature, are also in the context of being siblings. That the deaf perspective we know today comes from being marginalized daily in their interactions with hearing people is not a new phenomenon. Yet, deaf siblings confront their isolation with resiliency, evolving from daily encounters with people who do not sign in the family, the workplace, and their communities. Often the deaf perspective is misunderstood as being “emotionally immature” either by expressing their anger, possibly through yelling, behaving disruptively, or not caring when their authentic bluntness to the family and sibling experience is merely a response to the disempowerment they feel surrounded by loved ones. Their hearing counterparts’ responses are scrambled with witnessing the injustice, feelings of helplessness and confusion.
Our readers will also see how an influential man, who was well connected in many circles, was sought as a respected leader at the 1880 Conference of Milan. Using his deaf wife as a model example, this led the educators all over the world to enforce a communication policy in deaf education: forbidding sign and requiring speech and lipreading only. The beliefs, policies and training of educators and medical practitioners stemming from Milan have successfully been established as the mainstream objective. Even though the Milan Conference is ancient history, the goal to find a cure for deafness is not without tensions from many who have pleaded, not only for recognition as a cultural, linguistic group, but who seek authenticity within themselves and from others as human beings. Social justice activists tried to counter the consequences of the Milan edict, but they were up against centuries of forced marginalization towards people who are deaf. Deaf and hearing family members were the carriers of a stigma, the deaf attribution, in every aspect of their lives.
Access to mainstream society is a stepping stone to economic, political, and social opportunities. By digging deeper and identifying how the stigma is enmeshed in attitudes and behaviors acquired and held onto by previous generations as well as current society, deaf and hearing siblings have long-term opportunities to improve their interactions and relationship. Siblings acquire ways of interacting from parental and educators’ modeling. Then what fosters family harmony? We’ve identified the communication patterns of human interactions. Do they tend to interrupt when others are talking? Do they maintain eye contact? Do they sit down and talk during meal times, paying attention when everyone has a chance to tell about their day? Do they turn away while others are still talking to them? These questions focus on communication patterns, but clear and distinct behaviors have emerged with deaf and hearing siblings, based on auditory and visual cues. Our analysis addresses the tensions surrounding these issues, regardless of the degrees of sibling closeness.
Writing about siblings is revealing hidden family secrets. When we began our work as researchers, the interview process was almost like having a conversation with a therapist in our head. Sibling stories have rocked us, pushed our buttons, and brought out the worst or best in us. Selfishly, by learning how other deaf and hearing siblings in different stages of their lives responded to their daily stresses, it gave us insights to ponder in our own lives. It brought clarity, even joy and despair, yet at the same time the need for healing was a necessity for our emotional well-being. Even if we have yet to resolve our own sibling tensions, the pathway widened opportunities for responding to the interactions with our sisters and brothers in healthier ways. By comparing our sibling relationships with those of siblings we met, it gave us a framework: the search for a common ground to bond.
As authors, we begin the text as siblings, highlighting our backgrounds, our personal and professional experiences and how we live our lives as siblings. Unlike colleagues who know each other well collaborating in their respective offices, we were mere acquaintances. The conditions for partnership was each had to have a sibling who was either deaf or hearing, be fluent in American Sign Language (ASL) to communicate with one another, and be a social justice activist. How did two people, three states apart, write a book together, where we needed to blend our ideas, every phrase and every word? Interactive conversations were essential, not only for our role as authors, but in our commitment to keeping the perspectives of the siblings we interviewed. Our process became the defining challenge, especially since our sibling experiences were at opposite ends of closeness. Never anticipating how our intense and intimate conversations would bare our innermost vulnerabilities, we never wavered.
Early in our writing journey we had lengthy discussions and engaged in research about whether to use the upper case or the lower case letter D when we used the word deaf in our text. For close to thirty years, it had been common for authors to highlight the big D or little d, whether in their scholarly texts or lay articles, often with lengthy footnoted explanations, for the purpose of defending the existence of a cultural-linguistic deaf group. However, we’ve read that scholars and lay authors were inconsistent in their usages of the lower- and upper-case word, and have begun to question the purposes served by these distinctions (Brueggemann 2009). In addition, since the deaf community is diverse with multiple identities, our work is specifically geared at those who self-identify themselves as part of the DEAF-WORLD.1 Since our focus on being a sibling transcended our need to single out any distinct trait of anyone’s group affiliation, the particularity surrounding the lower case or upper case became moot. The DEAF-WORLD we describe is not a separate entity in society, but an existence of a group with its own language, culture and people co-existing in the mainstream. Those who are part of the DEAF-WORLD describe themselves as proponents of ASL and have had formative experiences in a deaf environment with native and near-native signers. Other communities, such as the Amish, feminists, or even groups who share a common interest with their own jargon, such as techs in Silicon Valley, share similar attributes that distinguish themselves from outsiders.
The DEAF-WORLD exists within the deaf community, which may be somewhat confusing to outsiders. When describing the deaf community, depending on whom you talk with or the context being discussed, it is often based on the identities of people gathered in specific places such as deaf clubs, silent dinners or retreats, deaf nights out, national, state and local conferences, deaf exhibitions, or other deaf events. How do hearing sisters and brothers of deaf siblings identify themselves to one another or when they are in the DEAF-WORLD? Being hearing has a double meaning: Born hearing is a biological definition, but H. Dirksen Bauman defines hearing identity as a “social construction” and “a profoundly different way of being in the world.” When a ten-year-old deaf boy at a school for the deaf told Bauman, “You are hearing,” for the first time Bauman awakened to the experience of being in the DEAF-WORLD, an “epistemological and cultural border that separates the Deaf and hearing worlds” (Bauman, Open Your Eyes: Deaf Studies Talking, 2008, viii). Many of the siblings we interviewed had similar experiences in which another identity, “becoming Hearing,” was revealed, like the layers of an onion. Some realized they had no choice but to be, or might want to be, part of their sibling’s DEAF-WORLD.
Another item throughout the text deserved a closer look: Sign. In the DEAF-WORLD, the definition for several lexical items have no equivalents in English. The term American Sign Language, conveyed in signed form, is ASL and capitalized in print to state its legitimacy as the official language used by native and near-native users. However, English uses the word “sign” in many different forms following English grammar rules. As a consequence, we’ve chosen to use the word “Sign,” not ASL, referring to forms of signing following English word order. However, in the DEAF-WORLD, ASL has two discrete vocabulary terms: one sign states the person is fluent in ASL; the other sign refers to person who uses another form of signing, either as “learning how to sign” or “not skilled,” or “lacks non-grammatical ASL features.” In English, the word sign does not show these distinctions. For these reasons, when the interviewees were ambiguous about whether they were referring either to ASL or another form of signing, we use the lower-case “s” in the word sign.
From the interviews we had, in spite of the variety of communication modalities, siblings’ objective was to understand and be understood. Our work is the platform for siblings who are deaf and hearing to begin having conversations. It is the place for siblings to analyze and understand how monitoring, facilitation or interpreting dictates the behaviors of both deaf and hearing siblings at family events, as they form partnerships with deaf and hearing family members. This text also presents the complexity surrounding using ASL interpreters at family events: The presence of a third party forces a shift in intimacy, changing the dynamics that often leaves deaf and hearing siblings feeling uneasy. However, rather than perpetuating the isolation among deaf and hearing siblings, the opportunities to get to know one another become available.
Professionals who work with deaf and hearing families are the closest in recognizing the severity of isolation and its impact on deaf and hearing siblings, yet there are many gaps in providing solutions. When families seek guidance from professionals, they are often sidetracked into single-focused positions on language approaches and educational issues, leaving them more bewildered and frustrated than ever. Early parental decisions affect every aspect of the deaf child’s education, interpersonal and social skills, and overall well-being. Hearing siblings are witnesses and live with the lasting effects woven into their lives. For some, the sibling relationship becomes the final product molded by the lack of resources and tools either unavailable or ineffectively applied. However, for other siblings, by virtue of their differences, they’ve found ways to nurture their bonds. They turn to one another, believing “the life of anyone with a sibling begins with a sidekick and traveling companion who can be with you the entire way. Wasting that relationship is folly of the first order. It’s true when we’re kids, it’s true when we’re adults, and it’s surely true when we’re aging and alone” (Kluger, The New Science of Siblings, 2006, 290).
Another factor contributing to the dilemma of fragile sibling relationships is the kind of help families receive. In the last decade or two, deaf professionals have been trained as social workers, psychologists, therapists, guidance counselors, audiologists, case managers, rehabilitation counselors, and physicians. Why are many of them not sought for their professional expertise? Does a pervading stigma remain ingrained in the psyches of those who fear interacting with deaf professionals? Is it because they sometimes do not share the same language and have had different life experiences? Or are employers unwilling to invest in deaf professionals, preventing them from providing services to families in the first place? Even though communication is key to any relationship, our interviews with deaf and hearing siblings led us to new insights and laid the groundwork for understanding how they address the inevitable tensions surrounding their interactions.
This book presents an overarching overview of how interacting with a deaf family member reflects the larger society’s attitudes and beliefs that have pervaded families’ lives. They may appear to be isolated issues, but they are a microcosm of the mainstream. These efforts require a shift in how we interact with one another daily, either in person or through social media, especially toward people who are not like us. This text is a pioneering work; little has been written about this topic. For the first time, we aim to expose layers of sibling interactions that others have not addressed, made possible by the stories siblings told us during lengthy free-formed, unstructured interviews. Their stories introduce a change in world view—using the lens of deaf and hearing siblings—to achieve family harmony.