Running Head:

DEAF-BLIND OF DEAF: A CASE STUDY

A Case Study Analysis of Sociolinguistic Development by a Congenitally Deaf-Blind Child Raised in an ASL Environment

Concept Paper S. Jordan Wright Spring, 2014 Gallaudet University

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Introduction Upon discovering she would give birth to a congenitally deaf-blind child Holly, a Deaf mother recalled her poignant reaction to me: Hes just one of us, period (personal communication November 21, 2013). Despite a maelstrom of covert belittlement by doctors stemming from a deficit perspective of deaf-blindness, Holly is a superadvocate choosing to accept a deaf-blind son for precisely who he is a notion that flies in the face of modern medicine. Holly essentially defies the notion of normalcy and instead, chooses to redefine the mainstream definition of normalcy as the central pillar of being for what she calls her Deaf Family (personal communication November 21, 2013). It has been said that to see and to not hear, is not living (Arauz, Aronson, Pinto, Preti, & et al, 1997). This statement stems from the research team of Arauz, Aronson, Pinto, and Preti, studying the effects upon cochlear implantation in deaf-blind individuals. The team explicitly stated the purpose of their research strives to restore normalcy and order to an otherwise desolate manifestation of a human being. Such perspectives upon deaf-blind individuals are rampant, as will be demonstrated by the literature review in this paper. Yet, the institution of medicine remains a powerful juggernaut in what Valente terms the colonization of young deaf bodies (Valente, 2011). In this mad scramble of rehabilitation disguised as covert warfare towards a hearingnormative society, Holly a middle class mother from the south emphatically resists the monolith of hearingstream America. In accepting deaf-blindness as a perfectly natural state of being, one that speaks to the whole child and not merely pieces of a disability jigsaw puzzle this very notion shakes the foundation of medical deficit perspectives on disability. At the same time, such a notion

DEAF-BLIND OF DEAF challenges the status quo of Deaf Critical Theory and the notion of Deaf individuals with

disabilities or commonly known in the familiar as Deaf plus. In the dynamics of this particular family, there lie rich opportunities to document and study unchartered experiences for social and linguistic development of a deaf-blind child raised in a Deaf family in which American Sign Language (ASL) is the native language. While working with the Signs of Literacy research team housed at Gallaudet University, I became part of the Family Study. This study seeks to understand the cornucopia of diversity that falls under the umbrella of Deaf Families. This particular family became of interest to me, which lead to a pilot study. In this paper, I will offer a statement of the problem to be followed by a review of the literature. Drawing on these conclusions, I will offer a synopsis of my pilot study coupled with critical theory framework that lays the foundation for my dissertation. Statement of the Problem Deaf-Blindness1 is generally considered to be a low incidence disability within the United States population (Chen & Haney, 1995). As such, there exists a dearth of research where Deaf-Blind individuals are concerned. Within this field of research, the literature review reveals polarized notions of what qualifies one as deaf-blind, and what constitutes appropriate linguistic and educational contexts for deaf-blind individuals. The term Deaf-Blindness is broad and includes a range of visual acuities in conjunction with hearing levels that differ from normative hearing (Chen & Haney, 1995). The most common cause of vision change resulting in a diagnosis of deaf-blind is Usher Syndrome Type I (Chen & Haney, 1995; Hartmann, 2012).

In this paper, Deaf-Blindness is capitalized when indicative of individuals identifying themselves as culturally Deaf-Blind. Deaf-Blindness is generally considered a subculture of Deaf Culture with the notable difference being a bundle of communication modalities that are utilized, whereas Deaf Culture recognizes American Sign Language as central.
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DEAF-BLIND OF DEAF Where the majority of research focuses on students of school age to adults with residual

hearing and vision, there exists scant evidence that explores congenitally deaf-blind2 infants in the sense that the infant in question is born near-totally blind and categorized as deaf. A review of the literature reveals there is no research-based study that examines the implications for deaf-blind of Deaf children raised in an environment in which the native language is ASL. There also exists no study involving deaf-blind children of Deaf parents. The purpose of this review is to demonstrate the paucity and inconsistency of research regarding Deaf-Blind individuals while laying a foundation for the basis of an ethnographic case study approach to a deaf-blind of Deaf infant with unique sociolinguistic needs, thereby contributing to this body of research. It is commonly held that deaf children born to hearing parents are often at a four-pronged disadvantage within the developmental realms of language, psychosocial ability, independent living skills, and academic success (Erting, 1994; Mitchell & Karchmer 2004; Thumann-Prezioso, 2005.) There exists some research that suggests deaf children with Deaf parents (hereafter, Deaf of Deaf) fare much better in the four developmental realms material to critical literacy and living skills (Erting, 1994; Morford & Mayberry, 2000; Traxler, 2000). These studies attribute such success to a direct communication between parents and child that is natural, spontaneous, and absent of a learning curve where a hearing family may but often does not learn ASL to communicate with their children. Deaf parents with deaf children possess a worldly knowledge replete with mastery of life-maze navigation equal to hearing parents with hearing children. When a deaf child is born to hearing parents, the equilibrium of shared experiences, the ability to foster

The term d/Deaf is used in a similar manner as d/Deaf-b/Blind. The former notation indicates a medical term, which does not carry a cultural implication. The latter notation indicates an individual who identifies themselves as part of Deaf of Deaf-Blind culture. In the case of children, deaf and deaf-blind are notations used to reflect a stage of development in which children do not independently claim membership of any cultural group.
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DEAF-BLIND OF DEAF like development, the ability to relate, and the ability to communicate are often sacrificed to the demands of cyborgization and colonization of young deaf bodies (Valente, 2011). The colonization of such children is often performed in a blitzkrieg approach to rectifying the disability on three fronts; speech therapy, oralism, and cyborgization via audiological equipment (Wright, 2013). A deaf-blind child born to Deaf parents presents a unique opportunity that does not otherwise exist in the realm of research. In the absence of scholarly discussions that contribute to

furthering our understanding of such dynamics, review of the literature was conducted to discover the status quo of current findings among the field. Next, I will offer a categorical synopsis of the literature review that shapes research questions and implications for the pilot study and dissertation. Review of the Literature Cognitive and Linguistic Development in Deaf-Blind People Research into the linguistic development of Deaf-Blind people through a review of the literature can be described as scattered and inconsistent at best. There is one piece of evidence that suggest Tactile American Sign Language (TASL) is distinct and different from ASL, therefore requiring a different linguistic approach to literacy that is not the same as ASL (Collins, 2004). It can be argued that TASL be broken down into different modalities: one-handed tactile and two-handed tactile sign language. However, these modalities are not the same in terms of linguistic uniformity and authenticity as recognized within English, ASL, and British Sign Language (BSL) (Mesch, 2013). There exists one case study that demonstrates emergent literacy strategies with deaf-blind children ages 3-21 (McKenzie & Davidson, 2007). McKenzie and Davidson studied the

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classroom dynamics of 29 deaf-blind (or deaf with visual and multiple impairments) students ages 3-21. They sought to determine what environmental characteristics promoted emergent literacy, what strategies were successful, and whether the role of the teacher had significant impact upon emergent literacy. Mackenzie and Davidson (2007) found that the majority of classrooms were print-rich environments that were essentially inaccessible to deaf-blind students. They reported that only 13.8% of the student records indicated a completed learning media assessment. A learning media assessment is a tool, which shows areas of strength in reading, printing, using braille, and Internet technology. The authors note that the absence of such assessments call into question how the decision to teach readable print as opposed to braille, for example is determined. While the majority of the student Individualized Education Programs (IEP) indicated literacy as a key component, Mackenzie and Davidson found only 18.6% of time was spent on such activities. Most importantly, the study found that students were categorized by teaches as readers or nonreaders which, in the opinion of Mackenzie and Davidson (2007) indicated a deficit perspective on behalf of the educational system. I would like to point to a recent study that touts the sociolinguistic development for DeafBlind preadolescents using Video Phone as a means to create a social circle among Deaf-Blind peers (Emerson & Bishop, 2012). Emerson and Bishop used a sample population of ten DeafBlind participants in an education setting in which ASL was used. Each participant was provided with a videophone (but not internet access) in their homes, spread among four southeastern states. Through a call log maintained by a family member, communication memos of the lead investigator, and an Intrinsic Motivation Inventory (IMI) tool to gauge enjoyment, data was collected and recorded. The basis of the study was to provide students with an avenue of

DEAF-BLIND OF DEAF communication and the means to expand the network of peers and support systems within the participants lives. Emerson and Bishop (2012) claim that several positive results came from the usage of videophone as a tool for social interaction. Despite this perceived success, Emerson and Bishop

note that while students understand the importance of having a videophone, they were at a loss for an explanation as to why it was important. They go further to claim having videophone technology is a step towards solving isolation issues that are allegedly a mainstay of Deaf-Blind lives. The authors claim that this type of technology forces us to rethink or notions of literacy where Deaf-Blind youth are concerned. In summary, there is no denying that the landscape of tomorrow is becoming increasingly digitized. Literacy for deaf-blind youth is by and large, an area of study that bears no seminal underpinnings, no theoretical basis, and certainly has not amassed a body of research. As evidenced by Mckenzie and Davidsons (2007) the only study in this category using academic rigor the status quo for education of this marginalized population leaves much to be desired. Mckenzie and Davidsons study along with Emerson and Bishop (2012) use a sample population of d/Deaf-b/Blind individuals that have visual acuity that works in conjunction with residual hearing which does fit the technical definition of deaf-blindness but falls short for a research basis within congenital deaf-blindness. This calls into question the merits of Collins (2004) claim that TASL is categorically different from ASL. This claim is based upon two participants, sighted for the first half of their lives. There is no research to support, or suggest otherwise that authentic TASL utilized by a congenitally deaf-blind child as a native language has the same dynamic as what is commonly understood to be TASL. In short, there is no scholarly evidence that demonstrates TASL

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development from birth to adulthood, which problematizes the issue of seminal underpinnings for the literacy development of congenitally deaf-blind youth. Education and Early Intervention for Deaf-Blind Children Like cognitive and literacy development, early intervention and education for deaf-blind children in research is scarce and inconsistent with findings. Education and intervention for deafblind children is directional. Depending upon the perspectives of educators and interventionists, such strategies can focus on rehabilitation based upon residual hearing and vision or they may focus on the whole child but not both. The overwhelming majority of the literature points to a deficit perspective of deaf-blind children in which they must be rehabilitated using what little valuable cultural capital they have left: hearing and vision (McKenzie, 2009). The focus upon the deaf-blind child as an individual who may benefit most from the use of signed and tactile signed language for example is evidenced by one study from the Netherlands (Jannsen, RiksenWalraven, vanDijik & Ruijssenaars, 2010). Janssen, Riksen-Walraven, van Dijik, and Ruijssenaars performed a comparative case study with two deaf-blind three-year-old boys. The team sought to study the effects of the Diagnostic Intervention Model by coaching the hearing mothers of deaf-blind children through a series of interventions. Goal items for the interventions consisted of: initiatives, confirmations, approving answers, disapproving answers, turn taking, turn giving, attention, regulation of intensity, and affective involvement. Due to the communication gap between hearing mothers and deaf-blind children, language acquisition in their native sign language proved to be difficult. The interventions took place over the course of six to eight weeks averaging ninety minutes in length. The data show that for every categorical baseline, the effect with coaching improves dramatically. Implications of this study point to embracing the whole child, the natural

DEAF-BLIND OF DEAF communication methods of the child, making this interaction the focal point for laying the framework for effective language scaffolding techniques.

In summary, paradigms within the education and early intervention of deaf-blind children are largely directional. The study performed by Janssen et al. (2010) is the only study in the literature review that supports a whole-child approach. The remaining eight studies found in this category portray a field that is fraught with dialectical standards of practice, an uneducated workforce, or a position that deaf-blind children must be taught to speak and hear (Chen, 2004; Giangreco, Edelman, MacFarland, & Luiselli, 1997; Hartmann, 2012; Jensema, 1981; Loeding & Greenan, 1998; McKenzie, 2007; Proctor, Niemeyer, & Compton, 2005; Towles-Reeves, Kampfer-Bohach, Garrett, Kearns, & Grisham-Brown, 2006; Wheeler & Griffin, 1997). Clinical Perspectives on Deaf-Blindness The deaf-blind child in my pilot study has received a cochlear implantation device at the decision of his Deaf parents. This presents a unique perspective under the theoretical lens of Deaf and Disability Critical Theories. As such, a literature review on Deaf-Blind individuals with cochlear implants revealed only one study. The very first cochlear implantation on a deaf-blind (late deafened, visual acuity onset by age) individual is documented in a research article that opens with to see and not hear is not living, as previously mentioned in the introduction Pinto, Preti, & et al. (1997). The overall clinical perspective regarding deaf-blindness is that of a condition that can be fixed, returning the individual to a more righteous placement among the ranks of society (Arauz, Aronson, Pinto, Preti, & et al, 1997). Although this study clearly demonstrates that deaf-blindness is an intolerable condition to not only the self but society, the merits of this claim lie in the technicality of semantics.

DEAF-BLIND OF DEAF The medical community looks for various ways to solve the problem of dual sensory loss. Borg, Neovious, and Kjellander claim that sound localization is a problem for the hearing impaired, deaf, and deaf-blind. As such, the team devised military warfare gear in an attempt to

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fix this problem (Borg, Neovius, & Kjellander, 2001). These technological advances designed for military warfare as an applicable form of tactilely locating sound and movement are based on the premise that such headgear, through the use of spectral cues can allow deaf and deaf-blind individuals to locate sound. This research team believes the implications of such technologies could be a benefit to deaf-blind and deaf individuals as an attempt to rehabilitate them into society. The research team of Sladen, et al., (2005) performed a quantitative experiment that sought to further understand the visual skills of deaf people. The premise of this study operates under the perceptual compensation theory. This theory argues that the body works best when all senses are available and working in synergy (Sladen, Tharpe, Ashmead, Grantham, & Chun, 2005). When one sense is deteriorated or at loss, other senses will take over and compensate for the lack of sensory input. It has been found by this team that Deaf individuals have better peripheral sensory abilities compared to their hearing peers. However, hearing individuals scored better in every other category of visual abilities, which contradicts the perceptual compensation theory put forth by this research team (Sladen, Tharpe, Ashmead, Grantham, & Chun, 2005.) In light of several different clinical approaches and perspectives in the rehabilitation of deaf-blind people, these findings pose the following problems: None of the studies mentioned above take into account subsequent communication needs and modes post-treatment. For example, the first cochlear implantation performed by (Arauz, Aronson, Pinto, Preti, & et al, 1997) was performed on an elderly man who used fingerspelling and homemade tactile quasi-

DEAF-BLIND OF DEAF signing as a means of late-deafened communication accommodations with his wife. It was

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believed by Sladen et al. (2005) that hearing and speaking would be the new avenue in which he would communicate, but they did not offer support or evidence of this endeavor. The focus was by and large, upon the medical improvements that occurred on a minuscule scale clearly not proportionate to becoming whole by cultural or linguistic standards. The same language and visual acuity issue, replete with cultural implications ring true for research involving military applications as an attempt to rehabilitate deaf-blind persons. Cuing such an individual to the locus of sound and movement is only ne part of human functions. Deaf individuals such as my self would argue tat the provision of being able to do so is not necessary for functionality as a way of being Deaf or Deaf-Blind. Finally, the study performed by Sladen et al. (2005) purports that Deaf and hearing people are dissimilar in visual acuity ability. If this is true, it contradicts with the perceptual compensation theory that seems to be the foundation for using residual human functions as a means of rehabilitation in early intervention. Using residual human function in attempt to force rehabilitation into a hearingnormative society is akin to hybridizing a disability where as deaf-blind does not equal deaf plus blind (deaf-blind deaf + blind: Bruce, Mann, Jones, & Gavin, 2007). Critical Theory Lens Drawing on Bruce et als (2007) concept that deaf-blind does not equal deaf plus blind, it is necessary to examine the terms Deaf Individuals with Disabilities or Deaf Plus as it is known in the familiar. Disability Critical Theory reflects a binary division between the consciousness of ableism among those who are able-bodied and those who are disabled and therefore labeled as such. As a member of the Deaf community, even among our members there exists a binary division in which Deaf individuals view themselves as able bodied and reserve

DEAF-BLIND OF DEAF the cultural right to categorize, or essentially shun those Deaf individuals having disabilities (Ware, 2000.) As such, the term Deaf Individuals with Disabilities exists to suggest a sort of

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hybrid disability, which relegates Deaf-Blind individuals to mere aberrations that must carry the scarlet letter of being Deaf plus. As a member of the Deaf community, it is a common belief that we as a people are not disabled. Yet, at the same time many of us want all of the rights and lifestyle accommodations that are afforded to us within the purview of the Americans with Disabilities Act to name but one piece of legislation. In doing so we must, by contracts of adhesion don the label of DeafDisabled. The dance of forced consent and inner contention is a literal walking contradiction. That is to say, while inside we hold ourselves to be perfectly whole and normative we must bow to the whims of colonization by legislation in order to receive a lifestyle many of us believe we deserve. DeafCrit, while still in its infancy does not share the same platform as Disability Theory. While Deaf individuals do not view themselves as disabled merely different but equal to hearing people, absent the notion of ability (Horejes, 2009; Humphries & Humphries, 2001), DeafCrit has not yet fully confronted the notion of Deaf individuals with disabilities. Even among prominent authors in the field of DeafCrit, the focus is by and large on the Deaf experience alone (Horejes, 2009; Humphries & Humphries 2011; Neese-Bailes, 2002; Valente 2008; & Valente, 2011.) The Pilot Study Under the framework of critical theory lenses in conjunction with the literature review, which consistently demonstrates a dearth of research on congenitally deaf-blind children, a pilot study was performed to assess the potential for the dissertation. The study of a Deaf-Blind child within the dynamics of a Deaf family provides rich opportunity to document a shift in perspective

DEAF-BLIND OF DEAF from the medical deficit perspective and stems from a holistic perspective by embracing the

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whole child. Such a study has the potential to offer a thick description to the scholarly community in the development of deaf-blind youth that has not been addressed in prior research. Through the guidance of grounded theory methodology, which includes participatory research, the ability to engage with members of the family creates an ethnographic experience that is unique in nature through the critical theory lenses of DeafCrit and Disability Critical Theory. My philosophical positioning aligns with the Transformative paradigm. The ontology of this paradigm provides for the possibility that multiple realities exist. What is particularly interesting to me to me is attempting to understand how literacy develops in Deaf-Blind children (fully deaf-blind at birth) through the understanding of Deaf parents who embrace ASL as a native language. Whereas most early intervention programs focus on what hearing and vision is left in an attempt to steer the child towards an oral/hearing-based way of being, the reality of language development from a Deaf and Deaf-Blind perspective is one worth observing. The methodology of a case study seeks to put the traditionally marginalized and silenced voices in the driver's seat. This pilot study was driven by the following research questions: How do the parents mediate an understanding of, and communication of concepts and the acquisition of language? How does the family mediate deaf cultural and deaf-blind cultural values?

Pilot Study Methods Grounded Theory Methods were used in the data analysis of the interview for this pilot study. I will address each step of the process separately although; the different stages of working with the data intertwine, overlap, and work in synergy with the document review, observation of the

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blog site, memos, and my field notes. Here, I specifically discuss how I coded the data within the interview to reach saturation in which categories became clear through a constant comparative method (Charmaz, 2012, p. 23) HyperResearch was used in the analysis of data for this pilot study. However, it was not used to (nor is able to) auto code, conceptualize, or build theories. HyperResearch is a software program used for coding and transcribing data, and functions largely as a data management tool that can assist the researcher in managing codes in a constant comparative method that can handle significant amounts of codes without the use of paper or other visualization aids. In this instance, due to the restraint of time and a relatively small amount of data, IHyperResearch was only used to code the interview. The development of categories and building of theories was done using paper and visual aids. The process has been documented via photograph as evidence. Coding After transcribing the interview from ASL into verbatim English, I began a line-by-line analysis of the transcription. The purpose of this analysis was to identify experiences, thoughts, and emotions that are summarized in a specific label for that line. Part of open coding involves a conscious awareness of patterns that may repeat and explain phenomenon presented in the data, while not making finalized decisions as to what categories truly emerge from the data (Charmaz, 2012 p. 92). Axial coding is the second level of analysis in which categories start to become more apparent and connected to properties and dimensions of subcategories (Charmaz, 2012 p91). These categories are compared alongside other categories to seek patterns, develop relationships, and identify further dimensions. In essence, the codes derived from open coding are weaved together in a way that relationships between singular codes form categories that demonstrate

DEAF-BLIND OF DEAF relationships and possibly answer questions the researchers may ask of the data before them (Charmaz, 2012 p 87). In this pilot study, four categories emerged as a result of axial coding, which seemed to be possible core categories. Results of the Study This interview was conducted with a Mother, Holly. She is the parent of a deaf-blind son, Johnny, in which his identity was learned prior to birth. This interview focuses upon

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clinical experiences prior to Johnny s birth, emotions experienced prior and after birth, as well as exploring the definition of ones place in life as it pertains to socially constructed norms of reality and disability. Defining Normalcy: The Definition of Family and Community The central theme emerging from this interview focuses on Defining Normalcy: The Definition of Family and Community. As the parents are both culturally Deaf, with the mother a graduate of Gallaudet University, both parents have significant exposure to deaf-blind individuals, as well as hearing individuals with multiple disabilities. In every instance where Holly has described another experience with a deaf-blind or blind individual, her language use is markedly positive. That is to say, every experience discussed is optimistic, progressive, and demonstrates a welcoming attitude towards such individuals. Of particular interest is Hollys story about a deaf-blind student enrolled in the same dance class she took at Gallaudet. At first, she states Wow. This is a HUGE challenge at the time! How to move, how to accommodate him, and adapt wow! She further describes how her experiences with this particular student became normal, finishing with a summary of sometimes it was pretty bad, but you know what, we made it! She narrated this story smiling at the memory from

DEAF-BLIND OF DEAF start to finish, exuding a positive air that demonstrated a complete level of comfort with challenges in alternative communications. The definition of normalcy as often critiqued by Disability Critical Theory becomes

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apparent as a pillar of defining ones own reality and taking ownership of normalcy that shifts away from the status quo and becomes centered within the owner of the definition. The grieving process in particular, is a prominent dimension within this category in which Holly almost feels trapped by the social implications of having a deaf-blind son. The social implications are threefold: the Clinical perspective, Hearingstream Americas perspective, and the implications of having a blind child born to a Deaf family in which ASL is the native language. As the mother explains it, the first diagnosis was that of blind. It was not known that the child is deaf at this point in time. The poignancy of the grieving process is evident when she states There was no warning. It hit me like a ton of bricks but still it was so cute! You could see his face, it was flat. Almost like there was no shape where the eyeballs should be. I kept looking at the ultrasound, and I kept thinking to myself how cute that was. And then the Doctor said in a serious tone (he wrote it on a piece of paper) Your baby has little or no eyes. The tone conveyed by the mother in this interview was that of sterile, clinical news delivered to her with a seemingly negative connotation. The stark contrast between the mothers fondness for her babys image on the ultrasound screen and the blunt delivery of clinical news forces Holly to grapple with the reality of defining family within the larger context of Deaf cultural values when she relates: Then it hit me. I freaked out for a moment. Im thinking to myself we are a Deaf family. What are we going to do with a blind kid?! That was my first reaction. Of course when I say we are a Deaf family, my daughter is hearing but she uses ASL so of course, we are a Deaf family. ASL, regardless of the family members hearing or seeing status is a defining dimension as a qualifier for normalcy within the locus of this familys place in the world. Having prior

DEAF-BLIND OF DEAF experience with deaf-blind, blind, and individuals with multiple disabilities coupled with a determinedly positive outlook on life, the grieving process immediately shifts to one of accommodating a new family member in the best way possible. Grief mixes with planning, bordering on acceptance and perhaps fear of the unknown as Holly drives home with the news and thinks to herself with tears streaming down her face:

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I had a moment of clarity where I remember thinking to myself OK, now what can I do t o make everything accessible for him? I went back and forth with this for so long, just back and forth. What am I going to do? Where is he going to go to school? The questions I had were endless. Mom, the Advocate / Preparing for the Future During axial coding, it was at this point where I realized that the mother as the Advocate plays a role in buttressing the central pillar of Defining Family and Normalcy. This realization of a monumental change in her family immediately became a catalyst to developing Holly as an Advocate who hit the ground running. Interestingly, I discovered through constant comparison that Holly is not merely an advocate for the Deaf, or an advocate for ASL or tactile ASL. She is an advocate for her family, which includes Deaf, Hearing, and Deaf-Blind members united by a common language and an evident feeling of love and belonging through this interview. Not only is advocacy a theme that centers around the birth of her son or preparing to make accommodations for her child, she actually advocates as a way of being in nearly every story narrated throughout the interview. A prime example is when Holly was just delivered the news of her babys diagnosis, the tech began to dictate how her hearing daughter would have to assume certain roles as she states: The woman, the tech knew my daughter was hearing, and she was telling her that shes going to have to be a helper because she has a blind brother. I was like No. No. Shes a kid. Leave her alone. Clearly, Holly takes upon an advocacy role as a central

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way of being amidst the delivery of unexpected news, being in a sterile clinical setting, yet at the same time, being a mother and an advocate for her family. Throughout this interview there are several examples of how Holly becomes an advocate for Johnny, as a deaf-blind individual. Communication was a phenomenon that occurred naturally and effortlessly as soon as Johnny was born. The family had already made immediate alternatives to ASL to communicate with Johnny as an infant not yet capable by size, stature, or dexterity could not reasonably communicate using tactile sign language. As Holly states: When it was time for milk, we already figured out how to accommodate him by grabbing his forearm for the sign for milk. That was the very first thing we did. Right away, Johnny learned to associate the sign milk with actual milk. She further explains that due to his size and stature, altering signs in a way he could learn and associate became second nature. For example, I will sign pants on his legs going upward, indicating time to put on pants. The opposite for pants off, I would sign on his legs pants down. The tactile opportunity is so important. I later learned that this was called touch cues. Clearly, the instincts of the family align with formal methods of communicating with deaf-blind youth as the family learned through Johnny s intervener and his attendance at Texas School for the Deaf. Through constant comparative method, it became clear to me that what starts out as a series of accommodations give way to a family unit that functions as a way of simply being. Hes just one of us, period. We are just another family, I felt like one of them. Hes deaf, just like you. All of these statements support the core theme of family, community, and normalcy as a phenomenon that has been inherently defined and lived out by the family, instead of succumbing to the hearingstream notion of what a normal family should be. This spirit of

DEAF-BLIND OF DEAF advocacy is further evident when Holly is constantly asked by Johnny s peers and classmates why Johnny is the way he is as the mother narrates:

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Sometimes school kids will ask me why are his eyes like that? Is he blind? Can he see? I actually think its cute. I waste no time explaining, and always take as much time as I can to advocate and inform people of all ages about the DB community It can get tiring after awhile, having to explain all the time but once they truly get it and understand it, they will move on and act normal around him and be his friend as opposed to getting mixed messages from adults. I dont like that. Clinical Conflicts: The fourth theme was the densest in terms of coding frequency. This was an emotionally charged category with polar perspectives. On the one hand, the Mothers attitude towards clinical conflicts was largely positive despite a seemingly negative influence. On the other hand, clinical perspectives from doctors, counselors, and techs were often negative and bereft of emotion. The results of this axial coding is still true after filtering out negative codes for common human experiences in clinical settings such as fear of needles, claustrophobia during an MRI, and an overall apprehension of going to the doctor. During the initial discovery of Johnny s diagnosis is peppered with observations and reactions from the mother that describe a feeling of confusion and panic as she narrates: the tech couldnt make sense of it. They ended up calling in the top guy to come and take a look. At the same time, it seemed almost as if the mother became an outsider to her own pre-natal health care needs because, as she relates: What was really interesting to me is, Im watching all this commotion going on between the techs they were telling me something was wrong with the eyes, but it seemed at the time, looking back that the interpreter didnt convey this information correctly. This pattern continues as we saw earlier with the tech attempting to place Hollys daughter in a role that violates the natural order of normalcy within her family. Not only that, she describes the

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genetics counselor as a man who was not very gentle. He really was very businesslike which I found shocking. Even through a series of various diagnoses tossed about and assigned, then reexamined, and reassigned, the anguish and fear caused by this clinical to-and-fro is evident as a force that significantly affected her family. However, for each potential scare Holly manages to naturally align herself with a positive outlook for the future. Everything is going to be ok Is a subcategory and a strong dimension in this theme that demonstrates a polar viewpoint that is held between Hollys family, and that of the medical community. Although my initial research question focuses on the linguistic development of a deafblind child raised in an ASL environment, it also encompasses the child-rearing dynamic of this family. Understanding the history prior to Johnny s birth has shown to be a cornerstone in knowing this familys story. This history provides a framework for how this family, as narrated by the mother, moves forward in building a positive and bright future for Johnny. If one were to start uncovering the linguistic dynamics of literacy development of Johnny, it would be remiss to start at the point of documenting language use as data. Touch cues could easily be construed as a deficit perspective, being that touch cues are not the same as TASL. With a dearth of research on early language development in deaf-blind youth, there is no consensus as to what way is the right way. Knowledge of adaptations and accommodations that fall away and become a way of being is key to understanding his initial language development. Not only is it language development for Johnny, it is in a larger sense a shared language as a component to the diversity that exists within this Deaf family. The very diversity within this family is precisely what defines it, held fast by the home language use of ASL at its core. Under this umbrella, there is a respect and an embracing of spoken English language as well as touch cues and tactile methods of communication. In a larger

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sense, the diversity of this family is precisely what makes them more alike than they are different, as a traditional society view on normalcy would hold. With the birth of Johnny, there is a re-birth of his mother as a plural advocate. This advocacy seems contradictory in the sense that Holly advocates for micro-diversity within her family which, in the larger world are communities often living disharmoniously with each other. With this strength and knowledge, the family is able to withstand the powerful grasp of colonization from the institute of medicine. This freedom and liberation is what lays the ground for unchartered territory in the future study of Johnny and the familys quest within the folds of life and language. Going Forward: The Dissertation Building upon the foundation laid throughout the pilot study coupled with the research questions herein, it is my goal to design a robust study using grounded theory and case study methodology. The methods described for use of the pilot study will essentially carry through for the dissertation. As this is a grounded theory approach, there are changes to the specific participants and literature review after data collection that will be different from, and build upon the pilot study. The pilot study was limited to the mother, Holly as a participant. I propose to use the following participants: Johnny as the focal participant, Father, Sister, and Brother as secondary participants. The dynamic of the whole family will provide for rich data to collect. While the primary focus is upon the mother and childs interaction, a secondary focus will look at the family dynamic as a whole t o observe how the father and two deaf siblings communicate with their deaf-blind brother. A tertiary focus will observe the various early intervention strategies used by paraprofessionals during their visits to the home.

DEAF-BLIND OF DEAF The data will be captured via video taken by myself and a co-researcher specifically for this project. Due to Johnnys age (currently almost three), the mother has agreed to provide

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archived video data of her own from birth up until his current stage in life. With a data collection spanning three years plus two weeks of intensive daily filming, there lies a rich source of data from which to utilize Grounded Theory Methods. The mother will participate as a co-researcher, as she has access to information not known to myself. For example, a significant amount of modified TASL signs are inherently their own communication, which would be unknown to an outside observer. Certain facial expressions and body language indicators easily missed by a casual observer could be the manifestation of several months work between the intervener and the child. Member-checks will be done with the mother, while using a Deaf-Blind professional as an auditor for the final draft of the findings from this research project. A focal point of this study seeks to interview each member of the family. I cannot predict that an interview can reasonably occur with Johnny. However, interaction with the child is important to document how he perceives new individuals, new environments, and navigates different register of TASL. A core component of using this observed data along with interviews is to unearth the stories from different viewpoints of the father, brother and sister, along with the mother. The naming of ones own reality, often giving voice to marginalized people (or families, in this instance) is important vis--vis stories, which infuse reality with life and provide background information (LadsonBillings, 2010). Ultimately, the data will follow the same rigor, triangulation, reporting, and a subsequent literature review as demonstrated by the reporting of my pilot study earlier in this paper.

DEAF-BLIND OF DEAF Limitations

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Certain limitations exist with this proposed study. Most prominently, the fact that this is a case study comes with limitations. Because a case study focuses on a single instance, and in this case a single unitthe issue of generalizability becomes conspicuous here when compared to other types of qualitative research. There is also an inherent bias present in conducting such a study. As a member of the Deaf community, as someone who has experienced oppression as both a Deaf and gay man, and as someone who is a staunch advocate of both the Deaf and Deaf-Blind communities, my emotions may carry some weight. Although we as researchers attempt to be neutral one cannot always remain neutral. In doing this study, I have an obligation to respect this family, the children, and cautiously consider the future implications upon them through my work. As the Deaf community is small, and the Deaf-Blind community even smaller, this caution is of extreme importance on my part as a researcher. As such the cultural and emotional ramifications may lean towards championing Deaf and Deaf-Blind lives. Building upon that, a general concern about case study research as Guba and Lincoln (1981) refer to as an unusual problem of ethics. A researcher could very well write and illustrate whatever she may please choosing from her own data set at will. However, with the tools of validity, reliability, and triangulation provided by tools suggested within grounded theory methods, I hope to dispel such concerns. Significance of the Study The significance of this proposed study has the potential to change and challenge commonly held notions pertaining to Deaf-Blindness. These changes will affect the currently held notion that TASL in its current state is not an actual product of Deaf-Blindness. TASL is a byproduct of linguistic accommodations for ASL users who experience a loss of acuity in vision.

DEAF-BLIND OF DEAF The true documentation of TASL literacy from congenitally Deaf-Blind infants, scaffolding methods of linguistic development between modalities of ASL and TASL, in addition to the sociolinguistic implications of such development is unchartered territory. Secondly, data from the pilot study suggests there is ample opportunity to challenge the cornerstones of DeafCrit theory. As mentioned earlier, it has been established that DeafCrit has

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not confronted the notion of Deaf individuals with disabilities. In this particular case, the family has expressed an unquestionable acceptance of a Deaf-Blind son in a holistic manner that essentially challenges the white unicorn of Capital D Deaf culture. To what end is this elusive culture available to the permutations evidenced in the various ways to be deaf within this diverse family? Thirdly, data from the pilot study suggests a new form of identity development not defined in scholarly literature. Surdescence, as claimed by Gertz (2006) is the process in which colonized deaf bodies embark upon a journey towards Deafness. Gertz builds this concept upon nigresence, which is essentially the process of becoming Black. Surd in Latin translates to deaf and the suffix escence indicates a process. This is a common theme in the lives of deaf children born to deaf parents and institution (Ramsey, 1997). Such data points to the possibility that the formation of a Deaf identity is only part of what the child in question can receive from the parents. To that end, what is the quest for Deaf-Blind identity development among the barriers of exclusion from Deaf Culture? It is possible that the proposed study will reveal the underpinnings of a young boys journey towards Surd-caecisence, the process and quest from being deaf-blind to becoming Deaf-Blind.

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