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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

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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 useof 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

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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 notincluded 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 themtogether 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 inPhenomenology of Perception

(1962) and McNeill inHand 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

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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 suffixness 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 observationin 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 ofhearing 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-ChristineWennergrens dissertational work(2007). She studied the dialogue competence of hard-of-

hearing 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 asgetting, directing, maintaining, redirectingand

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-of-

hearing 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 byteachers and professionals. The study focuses on the experiences of multicultural hard-of-

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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. Besidesproblems 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 theirchildspossibilities 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, theyexpressed 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. Otherthan 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 ofspace 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 havestolen 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 areaswhere 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-as-

learner (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 parent3) 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 Swedishcontext

5) The hybrid example, CI parent learning sign language and speech therapy6) The deaf parent perspective of their child using a CI7) The parent of a child with multiple disabilities, strengthening communication any way

possible

8) Using signs our way sign supported speechAn 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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