The Lifeworld of People Engaging with Cochlear Implant Users: What will be gained by studying parental experience of hearing

differentness? Theme A. Family-school relationships/partnerships for social and educational inclusion, equity and justice Key words: cochlear implant (CI), lifeworld, differentness, sign language, interpersonal relationships

Liz Adams Lyngbck Department of Education Stockholm University 106 91 Stockholm Tel: 46-70-87 50 80 Email: liz.adams.lyngback@edu.su.se

Conference Paper 9th International Conference September 4-6, 2013 European Research Network about Parents in Education Abstract The advancement of cochlear implant technology over the past 20 years has changed how perception through sound is contemplated and has brought about new questions in regard to language, communication, identity and distribution of resources in education. Hearing has been redefined to include a biotechnical extension of the body that is said to provide the use of CI technology to 95% of children born deaf or with a severe hearing impairment in Sweden (Karolinska Institutet, 2007). These biomedical practices influence attitudes and beliefs about sign language use and bilingualism. Due to the fundamental value of social equity that language use has for identity and socialization, I propose that the experiences of people who interact closely with CI users need be studied from a phenomenological perspective. Interdisciplinary research in education, informed by exploring the lifeworld focuses on taken for granted experience which can help us understand what it is like to live a life in a context of hearing differentness and how this compares to the recurring rhetoric at the societal level of individual solutions for hearing problems framed in technological, medical and economic terms. Guardians of candidates for CI surgery engage in making the decision for a corrective measure which determines potential perceptual experiences and existence. This also entails choosing and influencing a language environment for the child. What will be studied are the first perspective accounts of people engaged in communication with CI users who initially experience the world differently (deafness/hearing impairment) and then use a technically aided acquisition of spoken language and/or sign language. Parents or guardians also experience going in and out of ways of being in the world when they are directed and engaged with their children as they go through these changes. In focus will be what takes place in interpersonal relationships under newly forming linguistic circumstances and how people understand changes in ways of being in the world, their own as well as others. Key words: cochlear implant (CI), lifeworld, differentness, sign language, interpersonal relationships

Introduction Research in education involving parent perspectives on growth and learning together with their children draws on knowledge areas related to interpersonal relationships, communication and strategies to uphold streams of mutual understanding. What will be in focus in this paper is how to study experiences of change in a persons way of communicating with a user of a cochlear implant (CI). This will include a review of the research in Sweden in the CI field with an emphasis on experiences or perspectives of parents to CI users to be able to discuss an approach to this research objective. Reasons will be given to pursue an interdisciplinary approach where I will emphasize studying first person perspectives after first doing ethnographic work in order to show what can be gained by a phenomenological analysis of parents experience. Focus will be on the changes that occur when going in and out of different ways of being and communicating with others when there is a context of hearing differentness. The ethnographic work will contribute to an understanding of the subject area and the social and cultural context the parents/guardians are submerged in. Experiences of what is encouraged and discouraged in how to communicate and by whom, are of particular interest in the initial stages of the ethnographic study. There will be a proposal of how to develop an interview study building on two parts: 1) a summary of findings related to what is important to cultivating language development and personal growth and 2) a discussion of a pilot study interview with a parent of a CI user. The ambition is to put focus on the intuitive knowledge of parents and examine what practices are shaping the world of people living in a context of hearing differentness. I suspect that the expert voices on language learning, psychosocial development and deafness are being, at best ignored and at worst, subverted. The answer to understanding complexity of human experience is not done by cutting out perceptual pieces but by attempting to understand them as a whole. I have not yet found a phenomenological study on the experience of people who interact with CI users or HA users. I want to do this empirical work to make explicit the experience of parents/caregivers of people with hearing differentness in a society that medicalizes deafness which in turn is contributing to claims to solutions to pedagogical issues from a biomedical perspective. The strength in this contribution is that it will elucidate the lived experience of people who ordinarily are treated as exceptions or problems, and to argue for their rights. This is good for society as a whole, to make us think about what it means to live in a context of differentness.
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To strive to understand the internal subjective meaning of others lived experience in everyday existence contributes to a humanizing and rational use of knowledge that improves lives. It is ethically motivated by values pertaining to the common good. Empirical studies in phenomenological research are designed to make observations of concrete events and specific situations as they are experienced by people. The researcher does this in order to show what this situation is like, how it evolves and changes, how that matters for people in that situation and to discern their participation in what happens to them (Fischer, 2006). I want to explore events of engagement in hearing differentness between parents and children as they are lived by the parents. I believe that studying first person perspectives of people living this particular situation will advance our understanding of deafness and our understanding of the cultural and social impact of the medical technology of the cochlear implant. The overall objective presented in this paper is to be able to carry out a study of the lifeworld of parents of cochlear implant users and/or hearing aid users. I will first discuss methodology and then relay findings of related research and ethnographic work. Lastly I will present insights drawing on a pilot interview to show how I will proceed with the study. This paper argues for investigating experience using phenomenological methodology in an interdisciplinary approach. I use social scientific health studies of medical technology, knowledge about adult learning and adult language learning, studies on communication and disability, parent research and psychology to examine an experiential process of change. Experience, phenomenology and the lifeworld Drawing on inspiration from a phenomenological study focusing on body language I would like to discuss the relationship between body, speech, thought and communicative intent. Magnusson & Karlsson (2008) explored how blind adults use their bodies in speech acts. They collected videotaped data and compiled a typology of different forms of body expression. It is relevant to the study I propose to understand how to interpret similar speech acts where speech may be included in the communicative act by the parent as part of the production but is not included in what the other person can fully take part of due to deafness. Magnusson & Karlsson describe situations where the word or explanation couldnt be found but the hand form demonstrated the thought therefore conveying it in part of its form like with showing a dish form with their hands or placement in a room using the space in front of them together with their hands. The people I will include in my study will be learning to draw on
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the same type of relationship between body, speech and thought but where they most likely will be put in the position of having a speech form for the thought but not hand/body form. In their reflections on these events of the persons hands finding the form but not the word, Magnusson & Karlsson draw on the ideas of Merleau-Ponty in Phenomenology of Perception (1962) and McNeill in Hand and Mind (1992). In particular the idea of a dialectic process between body, speech and thought is drawn on to understand how expression can be contemplated. Magnusson & Karlsson say Body language has to be understood here in relation to both spoken language and thinking. The ideographs [like hands forming a dish but not finding the word dish, authors note] help give expression to a thought that is intended to find completion in spoken language. Seeing the thought as complete in itself and waiting to affix itself to appropriate words, would be partly to simplify the relationship between thought and language, and partly to reduce the defining function of language in the formation and completion of the thought. The thought points me in a direction that speaking makes manifest: speaking defines and gives form in a dialectical relationship with the thought. (p 79) I would like to use this description of a dialectical relationship between thought, language and form to analyze the experiences of changes in ways of communicating with people who do not hear as I do. Parents often find ways of conveying ideas when speech in verbal form cannot be used, heard or understood. The communicative act becomes more visual to meet the needs of the child. This can be manifested in different forms, some of which are consciously learned symbolic systems, like in the case of using sign language, supporting signs and cueing speech. Other forms are more similar to the body expressions utilized by blind people described in Magnusson & Karlssons typology (p 75). The change from only using expressions of the body to acquiring a linguistic system can say something more about the dialectical relationship in the manifestation of thought, especially in instances when signs or body expressions start to forego or circumvent the spoken form. Awareness of the differentness in hearing, ideas about the functioning of technology of the CI or hearing aid and every day experiences of deciding how, when and if to use space and body through conscious choice are central areas I hope to explore using phenomenological methodology. Also the ideas an individual has about their own thinking and relation to space

and how it changes because of adopting communication strategies to accommodate another person are of central interest. Experiences of the lifeworld of parents can be investigated by uncovering structures of consciousness in how they contemplate situations in everyday life. The study I propose is a study of consciousness and it requires a method that accommodates that it is a human act. A phenomenological methodology specifically recognizes the nature of consciousness as being intentional. Consciousness is always consciousness about something (Karlsson, 1993). A parents thoughts about the child and communication with this child are directed towards something outside themselves. It is this first person perspective of what they think about their childs way of experiencing which can be used to trace the changes the parent goes through to share a context with them. Differentness A phenomenological approach uses a point of departure in first person experience. How life is experienced through the senses, perception is related to what is outside the individual. The sense of self and the likenesses and differences are the backdrop to first person accounts. A way of talking about experience deals with events but how they bring about emotional responses and feelings. I choose to use the suffix ness to emphasize the first person quality in experience. Differentness is then a term that contains 1) a focus on experiences of existing differently which is the lived experience of difference 2) accounts for knowing that the person you are engaging with experiences differently than you do and 3) being made to feel different by others. Often the differentness of a person is what is in focus, noticed or paid attention to. What then happens with this quality of differentness tangents the processes of how it is possibly embraced, utilized to ones advantage or defended in enacting agency, a type of normalization of differentness, one could say. Even so when using this term to denote a quality it still points towards a notion of normality but emphasizes that this quality starts from a subjective experience. In respect to hearing there is less focus on dis/ability and more on what can be gained by focusing on what it reveals about a persons lifeworld. Hearing differentness is related to using the term hearing status instead of hearing impaired, hard-of-hearing or deaf. Hearing status represents a way of expressing diversity of the ability to use sound and is not focused on problematizing or correcting the
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body. Similarly, I am positioning myself as a researcher in a phenomenological project by seeing the body as that through which we know the world and by using the term hearing differentness. Ethnographic study of a Swedish context related to hearing differentness The ethnographic work laid out for beginning this study includes taking part in practices emerging out of the current development of the use of CI technology in Sweden to pinpoint how it might be influencing ideas about language, learning, bilingualism and using sign language. I need an understanding of the social and cultural context of the individuals I am going to interview. I attended a parent conference in Sweden on the new perspectives and developments of CI in the fall of 2012, carried out study visits to authorities and organizations dealing with hearing and deafness and am conducting participant observation in groups of adults learning Swedish sign language both at university and parent education programs. The Swedish context of this study presents opportunities to investigate the experience of parents in a society where technical development in the field of hearing and deafness is highly advanced, the social welfare system is comprehensive and includes services that aim at educating and supporting parents of children who were found to hear poorly. In addition to this, Sweden is one of relatively few countries where sign language has been given official language status for its users and is protected by law providing an equivalent status to Swedens minority languages. The availability of advanced medical technology to all citizens, the structures of rehabilitative services and the sanctioned and supported status of sign language are examples of what create the social context backdrop of the experience of parents in Sweden. Also the right to instruction in ones native language in the Swedish school system and language rights of immigrants make up a part of how language is talked and thought about. These factors offer a rich combination of potential experience where the parent often takes on a learners role as well as an instructors role impacting how they interact with their children and on behalf of their children. Studying experience from a first person perspective in this shared environment can provide knowledge on what is valuable to individuals and their families in their daily lives. Most parents to deaf children are hearing (90-95%) (DHB, 2013). Depending on the needs of the child a system of signs based on Swedish Sign Language are used when the child is still
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an infant and is found to be deaf or severely hard of hearing. Support in communicating with ones child is offered through the municipally run hearing habilitation center. The needs of the child determine what is offered to and encouraged of the parents. Up until the childs age of 20 the hearing center provides advice and programs. I will continue to do field work about how a CI center organizes their work and what type of communicative practices are encouraged when using CI technology. The hearing rehabilitation center is another site where parents are referred to for services, information and education. An extension of these services continues in a program called TUFF (SPSM, 2013) which is a state financed program for parents to learn Swedish Sign Language in a continuing education environment. This program is under the direction of SPSM, National Agency for Special Needs Education and Schools which also administers the special schools for the deaf and support for schools and teachers of integrated/mainstreamed students with special educational needs. Parents come into contact with these actors in addition to their childs school and possibly parent organizations for deaf and/or hard-of-hearing children. The ethnographic research is being used to navigate in the available sources of support, help and care parents use. Understanding the content of interview material requires being familiar with the context in which parents are acting. What they describe, tell, experience, find significant and attach meaning to, are grounded in relationships and networks in the field of hearing differentness. This pre-understanding will help remove some of the conceptual boundaries of being an outsider and identify themes umbrellaed by the phenomenon of change in ways of engaging with their children. Literature survey The initial purpose of this survey is to extract findings pertaining to the involvement and experience of parents in the CI field, in particular, their role in interpersonal communication and their learning processes to complement ethnographic work. A search for related qualitative studies useful in planning a phenomenological study of parents accounts in this context became the primary objective. Following below are short summaries of the work that is most relevant to the argument of pursuing a line of study of experience of CI technology. Language learning, competency and use Anderson (2002) looks at interpersonal communication with children with special needs who have hearing loss. She has compiled a list of what facilitates interpersonal communication and
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what makes this difficult. The parents accounts of the childrens communicative environment and linguistic ability were included in the study. In general it was described that different types of communication were used in different environments. The communicative competence of the adults in the school and home environment, as well as their attitudes toward disability, varied. This variation lead to shortcomings in the provision of reliable communicative situations. It was a common experience that it was hard to understand the child and that most interpersonal communication occurred between the child and an adult. Where there were defined communication strategies of the individual including a shared code of communication that could be used in the childs different environments, then development was seen as being facilitated. It was pointed out that when parents were looked upon as a communicative resource and shared the aims of the people working with the child then it was seen as beneficial to the overall goal of enabling communication. Factors that were seen as working against aims of communicative and linguistic development were inconsistency in expectations, planning and follow-up of the students. Limiting effects on communication included language competency of adults in the childs different environments and attitudes toward disability which focused on limitations of the individual child. Understanding the needs of individuals when it comes to language environment and providing an opportunity to express these needs was an important finding in Ann-Christine Wennergrens dissertational work (2007). She studied the dialogue competence of hard-ofhearing students by looking at the pattern of communication with an action research study approach. The needs expressed by students when they had the role of listener involved a cleaned up sound environment, visual support, conversation rules and comfortable surroundings but differed for individuals. A main focus of teachers in the schools where the research was carried out dealt with how to improve dialogue exchange among the students and how to share these structures with other teachers.

Clearly parents and teachers have similar ambitions in optimizing communication environments which include individual hearing needs and acoustic, visual and technical factors. As part of a longitudinal study, Cramr-Wolrath (2011) wrote about strategies used by deaf parents of twins, one hearing and one deaf. The functions, describing facets of attention in the linguistic exchange, were categorized as getting, directing, maintaining, redirecting and changing. A discussion of seating and placement during story time was also of importance for communicative interaction. These two studies, one from a multiple-user multi-modal school
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environment and the other studying a single familys interaction during story time exemplify the variation of type of knowledge that can help to make clear what adults do in situations that are quite different on the surface but build on a type of knowledge about how I direct myself to others and the world intending to enable communication. But what happens when difficulties in obtaining mutual understanding cause a person discomfort and insecurity due to the fear of failing at such a basic social act? Linikko (2009) examined the situation of inclusion at special schools for the deaf and hard of hearing. In reference to communication, some pupils require teachers to use several modalities. The teachers who do not have daily contact with these pupils felt incapable of doing what was necessary to communicate and would sometimes choose to avoid interaction. This impacted the level of inclusion since it created barriers in schedules, sharing workloads and substituting practices. Findings support the idea that inclusion requires more time and resources to be achieved. In respect to relevance to parents situations, they are in a similar way required to use several modalities especially in home environments. Barriers are created in using or not using verbal and visual communication. They are shared differently, in different mediums, sound and sight. Choice of modality can be excluding and including.

It is a recurring issue of how to provide the type of language environment a deaf or hard-ofhearing person needs when parents are seldom proficient in Swedish Sign Language (SSL) since most deaf children are born to hearing parents. In linguistic studies of language learning questions, concern acquisition and proficiency and explaining the conditions under which these occur. Schnstrm (2010) studied language proficiency of school-aged deaf pupils from a bilingual perspective, meaning literacy in Swedish and SSL. An important part of this work includes the history of (deaf) bilingual education and the status of a signed language. The conclusion of this study supports the notion that SSL plays a crucial part in the development of Swedish among deaf learners. Opportunity to develop the signed language naturally should go before learning to read and write in a second language just as is the case in spoken language. Often ideas about what helps and hurts the ability to become fluent in a native language are simplified by a monolinguistic assumption. Khattab (2010) points out how misconceptions about having multilinguistic backgrounds cause these situations to be seen as problematic by teachers and professionals. The study focuses on the experiences of multicultural hard-of10

hearing pupils and how they use sign language. The researcher has asked how and when students use sign language in a school environment. Issues of multiculturalism and multilingualism are raised questioning the lack of awareness of the strengths that can be utilized in the students learning. Lack of stimulation and lack of knowledge of the individual students abilities are also examined. Meristo (2007) writes about the importance of a shared language in the development of mentalizing skills in children. It was found to not be of significance if the language was verbal or visual but that it was shared meaning continuous access to fluent communication with those in close contact at home and school. The measurement of understanding others thoughts was the basis on which the significance of access to language was determined. Studies on the conditions of deaf and hard-of-hearing children and students point to issues that are crucial to include and investigate when talking to parents about their ideas on how this actually works in their lives with their children. Communication is taking place in every relationship and studying what parents see as a way forward and helpful for them in their engagement with a child using a CI will enhance the picture we currently have in the numerous areas of knowledge in this field.

Research with parents When CI technology became an option for parents of deaf children it changed the landscape of hearing and deafness. Even though ones child may not have even been eligible it required people in this context to form an opinion on the use of an invasive measure on children. Jacobsson (2000) uses discourse analysis to reveal how deafness is talked about in the time period when the conflict was at its climax in Sweden, the conflict being whether parents should have their children implanted or not. It is still an important area to include and understand the experiences of parents when it comes to talking about communication with ones child and within the family. The sociocultural backgrounds in which people live are reflected in the relaying of individual experience. Johansson et al (2008) include a study building on parent interviews which focuses on the outcomes of a CI operation. Mostly positive descriptions in reference to the childs development, speech, communication and willingness to interact were reported. Besides problems with technical equipment and proximity to the CI clinic, negative experiences refer
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to the climate of debate surrounding the practice of cochlear implantation, having a need to defend ones decision and concerns about the childs future and how the child will be treated by the deaf community. The other context where parents are studied in Johansson et al (2008) are in the network model of language training. In short, this is a method building on inspiration from ecological models of human development (Bronfenbrenner, 1994) and education research in enrichment and empowerment movements. Parents, relatives and significant individuals in the childs day to day environment including professionals in school and rehabilitation services meet on a regular basis to promote the communicative development of the child using a CI. Most notable from this part of Johanssons work is that parents value the experiences of participation and influence on the habilitation practices and are described as the prime motivator to stimulate and interact according to mutual communicative interaction goals. Midboe (2009) studied young CI users experiences of participation/involvement in social communicative interaction by posing questions about how they communicate, what they do to facilitate communication and how they feel that what they do achieves communicative goals. They were also asked about what factors contribute to or pose problems for being able to participate. It was found that functional ability, activity, surrounding factors and personal factors have an impact on participation. The experience of involvement in a situation has an influence on the activity which can in turn impact the event. Past experiences of having a chance to develop speech in a stimulating environment or spend time in stimulating sign language environments influenced the current level or ability to participate. It was pointed out that whether or not family members were provided with sign language instruction in a way that resulted in being able to share this language mode with their child had an effect on their ability later in life to be able to participate and be involved. These CI users believed that if parents are successful learners of sign language, they contribute to facilitating their childs possibilities of participation and involvement. Willstedt Svenssons (1999) conducted a survey study of parents on the educational needs and possibilities of children who use CI with social and communicative development in focus. Parents were asked about how their children use their CI and how well they communicate in sign language. When the parents discussed why they chose to give their child a CI, they expressed a wish of letting their child chose to use sound or silence and offer them the
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opportunity to decide later on about the group they would identify with. Thinking about the childs future life was a motivating factor. All of the parents who took part in the survey had the understanding that a foundation in sign language was important for their child which was also a part of the child being able to make decisions about the future. In closing there was an interesting comment about accepting the childs abilities and conditions, whether they were born with them or not which was referring to the CI as being accepted as a part of the child. There may lay an explanation to the relatively high involvement of parents in dialogue and rehabilitative practices with professionals when seeing the CI more as a part of the individual than other hearing aid devices. A later study by Nelfelt & Nordqvist Palviainen (2004) found that parents and professionals experienced a large degree of uncertainty concerning what type of language and communication techniques can or should be chosen for children using CI technology. The cause of this uncertainty centered on not knowing what realistic goals and expectations to have of their childs development and ability. To be able to communicate linguistically and in a developmentally appropriate way at a very early stage in a childs life is the most important goal in promoting early language development. For deaf or hard of hearing children as these young ages, this must include a use of signs. Sign language instruction programs must be adapted to the different needs and abilities of parents/caretakers. Maximizing the time spent in calm environments providing opportunities for mutual attention are a prerequisite for optimal language development. Daycares and pre-school environments seldom provide this type of environment. Parent courses need to include bringing this to the attention of parents since it is neither a generally obvious or shared idea. In schools, the description of communication situations often involves group interaction and this rapidly changing landscape is more descriptive of what everyday life is like for children. Bergstadius (2006) studied children who use CI technology and how their school situation allowed for communication. She reports seeing that the use of language mode, spoken Swedish or Swedish sign language or a blending are used for communicative goals in being active in a dialogical and interactive event. There were language role models for the students who were encouraged to focus on natural language learning in authentic events in order to be active and creative in the learning environment.

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A contrasting home situation would be where the child develops in a different language environment and uses a combination of signs and speech or a code switching which their parents arent exposed to. Persson (2011) investigates parents experiences of using signs as alternative and augmentative communication (ACC). The main question leading the project was to identify the factors that affect the parents use of sign supported speech. Persson interviewed parents about their experiences using signs and found that the main factors affecting the use of signs were 1) the parents own knowledge of signs 2) the course content and structure and 3) the childs school and home environment as whether or not they are given inspiration to have a larger knowledge of signs than their child. The study also reports that parents want the habilitation services to be more pro-active oriented and offer advanced sign courses. A pilot interview- a guide for a phenomenological interview study with parents I met Erika, the mother of a child with bilateral cochlear implants to discuss her participation in a pilot study interview focusing on her experiences of relating to a person who hears differently. This discussion quickly resulted in an interview where hand-written notes were taken and complemented with clarifications immediately after we parted. A number of potential issues were revealed within the first five minutes that would help generate questions for future semi-structured interviews. These focused on communication, parenting, sound, language environment, illness narratives, normalizing strategies, and rich description statements about identity, both the parents and the childs. Also made visible were the effects of having a controversial medical technology (CI) as a departure point. The importance of complementing a study of experience in using a CI in communication, as a parent does with a study of the social circumstances in which the experience takes place, became evident. It appeared that there are layers to be worked through; the debate climate which begs a positioning of opinion by the parent-as-consumers, the voicing of the childs experience being more prominent than the interactors first person experience, ideas about what is normal/desirable and the good parent role involving choosing the best for the child as well as the family. Some quotes can be reported for the sake of identifying important areas to Erika. In the very first correspondence she told of how her child refers to and thinks about his cochlear implants. He calls them his robot ears. He says, Im special. I have my robot ears. Other than that he doesnt think about it. At night he takes them off, gives them to us to
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change the batteries, then we put them back in his box by his bed. When he gets up he just puts them on. Completely anxiety free. The family doesnt have contact anymore with other families that have a child who uses a CI which may reveal how parental choices affect identification processes. He goes to school in a normal class. He plays with a small group of boys on a daily basis after school. Here Erika goes into describing a theme that is important to her; normal socialization. She went on to describe how they have worked very hard with supporting their sons speech and language development by reading out loud, using difficult words and explaining them. His Swedish is above average in both comprehension and vocabulary use. Providing this type of language input was important for the family. Now after they have seen how well things have turned out for their son when it comes to speech and learning Erika says they want to put emphasis on an age appropriate social environment so he can learn to use the type of language children use. I had asked if he ever meets or plays with other children who have a CI. She answered that he did when he was younger, when they were involved in groups organized by the hospital and habilitation team they had. Not now. Again she mentioned that they rarely think about it since there is no need since he does so well in the environments he is in. Noting surprises during the interview help to focus on the experience of the parent and to put pre-conceptions aside (van Manen, 2001). What I might expect to be problematic, like not having a way to communicate with ones child, school placement, the childs friends or lack thereof, are the focus of a research aim and interfere with an overriding goal of being able to examine experience. Unexpected issues can then be used to interpret such researcher bias and be able to approach the study with an open mind and hear what is significant to the parent. The big issue when he was small was the magnet situation, they kept falling off. The magnet that keeps the CI attached to the side of the head created more concern than the surgical procedure. Also any health issues like balance problems after meningitis concerned Erika much more than hearing and language development. Interestingly, what is not said in interviews reveals a way to go forward in a phenomenological study. Either the exchange is too vague and general or the elicitation of concrete examples and accounts are too few. The previous research I have taken part of is guided by questions in the professions and disciplines of those researchers. The literature and research centering on parents often focuses on the hours of training and the extent of
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commitment parents must have in devoting time to being involved in the speech training regimens lead by others. In the interview with Erika no professionally guided or instructed speech therapy was mentioned at all. A jump in the exchange goes from the school environment to the background sound in the noisy caf we were sitting in. That would have been an environment Erika would have avoided with her son only a short while ago. She said that after the age of 6 the child is involved in the programming of the sound the CI provides. Before this there is a standard program for all child users since it is hard to get them to give responses about preferences of how they want to use the CI. Erikas child has now had the opportunity to do this which explains why noisy environments used to be something she avoided or was concerned about. She would sit and think, Ok, its noisy here. He cant hear a thing. After this exchange, Erika then mentioned something that had happened just the other day. I was using a normal conversation voice in the kitchen in our apartment, we have two-floor, and Magnus heard me and commented on what I had said. This gave me goose-bumps! I had no idea he could do that! These two accounts about environment, the noisy caf and the hearing at a distance, can potentially lead to focusing on the use of space as a category for asking about communication in a daily context. This would be done to ask participants to describe situations as concretely as possible. Before this short meeting ended she wanted to share a motivation for why she wants to participate in research by being interviewed. She feels the picture given in media in the form of debate articles emphasizes problems and contentions between groups. Again she mentions how normal things have turned out for their son. The deaf community thinks we have stolen one of theirs; that by not teaching sign language or putting him in a signing environment we are depriving him of what he needs. He really doesnt have anything in common with them. He became deaf over the course of an afternoon. After a number of weeks he received his implant(s) and after another three weeks he was hooked up. Motivation for participation only concerned me as part of the work a researcher does when recruiting people for the study. This last quote actualizes beliefs and opinions that are a part of
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experience that breaks through. Accounting for experience anchored in a social debate is part of how I want to go about this project. In my masters thesis (Adams Lyngbck, 2010) one of the main findings was the realization of ones own opinions and how they affected behavior in everyday situations. I see the above quote as an example of what possibly frames the experience of the relator to the CI user. Changes Erika went through included dealing with her sons near death illness and balance problems which hindered Magnus from being able to walk put the hearing status in the background. These changes were the conditions which capsuled the hearing loss. She didnt think of it at first. Energy went towards trusting that the child would survive. The changes came later in the home environment where reading out loud was the primary plan of action for helping Magnus to learn to listen with his new implant. This was done in both languages since the family had moved to an English speaking environment after implantation. Erika said that Magnus had much less progress in acquiring English than the parents had hoped. Their younger child at the same preschool picked up English very quickly. They deducted that he simply did not have the learning support he needed at the time. His Swedish was strong though and they continued to strengthen his speech environment as mentioned earlier. I noted that she mentions learning support and not hearing support as well as not mentioning the acoustic environment like she had when talking about the noisy caf. These would be areas where I would try to elicit more concrete descriptions in a longer interview. TSS (Tecken Som Std) is the Swedish acronym for speech supporting signs. Erika said these courses were encouraged when Magnus had received his first implant. Here Erika had met other parents of children who had received a CI. She said that they had stopped using what they had learned when they realized it wasnt needed since their son spoke so well and heard what they said. What depicted the exchange was the reflection of how well things had turned out and that Erika feels there are more and more indications that this is the direction events in her childs life will continue to take. What I can gain from this exchange is that thinking about the childs environment and ability is a way of going into a different way of being, imagining or directing ones thoughts to think what it is like to be or hear like ones child. I do wonder, as many have before, what question the child is answering for us. What part of child experience is being studied when using parent perspectives including imagining what it is like to not hear or contemplating what is happening in another persons world.
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Summary The guiding question when doing the research at this preliminary stage was What is lacking? I found the answer to be that more should be done to understand what it is like to be a parent who lives with a child who hears and communicates differently. These people can talk concretely about practices, including accounts of how they use signing as well as how they use technology that depict their avenues of communication in everyday life. This is interesting for a number of reasons. Adult motivation for learning and adapting differs from childrens but it also affects the language development of them to a higher degree since it is in a context of hearing differentness. People differ in how active they are in learning signs or taking part in rehabilitation practices to promote listening. This then changes to a situation where children can develop in different communication environments like in schools or in groups of friends which changes the language environment at home, at least potentially. If not the language environment then there will be changes elsewhere like in the patterns of communication with the child and other family members or the emotions connected to knowing what you do and dont do result in including/excluding. How well has the focus of research in this field been able to answer questions about how a relationship contextualized in hearing differentness differ from other relationships. I can think of two main areas where an interpretation of parents experience is needed: 1) How can the process of change in an individual be described when being parent-as-teacher, parent-aslearner (first from other adults and then from ones own child) and parent-as-caretaker? 2) How do parents talk about how this change feels in a life altering sense? Furthermore, the descriptions that can come out of a study of experience can reveal the nature of the relationship between thought, language, body and space as it is lived. Variation in perception can be represented in different acts: like touch when tapping someones shoulder, directing ones body by turning to face each other, forming hands and mouth in gestures and learned linguistic systems, using space and gesture to symbolize the world, closeness between bodies by signing with each others hands, the prerequisite of presence in the same room, proximity to allow interaction, sight enabled communication through windows and across rooms. How is this type of change embodied in what people do and how they think? What does engaging with a person with hearing differentness do to them? The goal of this project is to understand what constitutes the nature of that lived experience.

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What needs to be done? A proposal for an interview study Drawing on the findings in the ethnographic work, the literature study and the pilot interview the task now at hand is to propose a way forward in data collection. Using a phenomenological approach focusing on first person experience I will conduct one to one and half hour interviews with parents or guardians of CI users. I will diversify the data I collection by planning interviews that can be described as follows: 1) The CI parent using AVT (Auditory Verbal Therapy) 2) The sign language learning parent 3) The parent of an adult deaf sign user, following ones child into Deaf community/culture 4) The multilingual immigrant family facing hearing loss/deafness in a foreign Swedish context 5) The hybrid example, CI parent learning sign language and speech therapy 6) The deaf parent perspective of their child using a CI 7) The parent of a child with multiple disabilities, strengthening communication any way possible 8) Using signs our way sign supported speech An analysis of experiences will draw on these in-depth interviews with people learning to communicate in new ways with CI (cochlear implant) users, HA (hearing aid) users and deaf individual. Questions will include asking people to give accounts of adopting visual communication in interpersonal relationships and/or using therapeutic practices to support speech development.

Conclusion Posing questions to ones self at the same time as posing questions to a vast field of research as diverse as the one centering on the cultural artifact of the cochlear implant was truly a mental exercise. I truly want to know what can be gained by studying parental experience of hearing differentness. I look forward to the comments and discussions that will emanate from this paper. Is it feasible that a phenomenological interdisciplinary approach drawing on the
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current knowledge production in the CI field will link the impact of these technological practices on bodies to the linguistic and interpersonal development of individuals and families from a lifeworld perspective? I certainly hope so. By utilizing research practices in education research, especially seminar discussions and inquiries, we study processes that impact day to day living. I want to direct this lens on the lives of families living in hearing differentness. I hope to make a significant contribution towards promoting language learning as an issue of social equity.

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Merleau-Ponty, M. (1962). Phenomenology of Perception. London: Routledge & Kegan Paul Ltd. Midboe, M. (2011). Upplevelse av delaktighet i det sociala samspelet hos ungdomar med cochleaimplantat. Stockholm , Sweden: Stockholm University. Nelfelt, K. &. (2004). DET HRS! -Frn visuell till auditiv kommunikation hos sm dva barn med cochleaimplantat. Gothenburg, Sweden: Gothenburg Papers in Theoretical Linguistics. Persson, J. (2011). Frldraerfarenheter av TAKK -tecken som alternativ och kompletterande kommunikation Parents Experiences of Using Signs as Alternative and Augmentative Communication.(student uppsats). Karlstad Sweden: Karlstad universitet. Schnstrm, K. (2010). Tvsprkighet hos dva skolelever: Processbarhet i svenska och narrativ struktur i svenska och svenskt. Stockholm: US-AB Universitetsservice. Wennergren, A. (2007). Dialogkompetens i skolans vardag: en aktionsforskningsstudie. Lule, Sweden: Universitetstryckeriet. Willstedt Svensson, U. (1999). Att hra eller inte hra.En studie om barn med cochleaimplantat. Stockholm, Sweden: Institution fr specialpedagogik. Internet sources: Karolinska Institutet. http://www.karolinska.se/Verksamheternas/Kliniker--enheter/Horsel-ochbalans/Diagnostik-och-yrsel/Horselundersokningar-pa-barn/Nyfoddhetsscreening/ accessed 20130124 DHB National organization for children deaf, hard-of-hearing and speech impediment http://www.dhb.se/?id=57 accessed 20130124 TUFF Tecken utbildning fr frldrar. Sign language for parents http://www.spsm.se/sv/Vierbjuder/Kurser-och-konferenser/For-foraldrar/Teckenspraksutbildning-for-vissa-foraldrar/ accessed 20130124

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