Journal of Deaf Studies and Deaf Education Advance Access originally published online on May 12, 2006
The Journal of Deaf Studies and Deaf Education 2006 11(4):461-476; doi:10.1093/deafed/enj044
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
They Only See It When the Sun Shines in My Ears: Exploring Perceptions of Adolescent Hearing Aid Users
New Zealand Ministry of Education
New Zealand Ministry of Education and Massey University
Correspondence should be sent to Bruce Kent, Ministry of Education (Special Education), PO Box 76 620, Manukau, Auckland, New Zealand (e-mail: bruce.kent{at}minedu.govt.nz).
Received August 23, 2005; revised April 5, 2006; accepted April 14, 2006
Hard-of-hearing (HOH) young people may encounter multiple challenges to their educational, social, and emotional development. The benefits of wearing hearing aids to enhance communication may be countered by negative stigma associated with hearing aids. This study explored the experience of 16 bilaterally, moderately to severely HOH adolescents in mainstream education to understand their perceptions of using hearing aids. A core category of "normality" emerged from the data, which captures the predominant issue for these young people. The sense of being normal may be situationally determined, but those who are able to perceive their use of hearing aids in a given context as normal most frequently use them. Regardless of the age of diagnosis or length of time since fitting, if use of hearing aids is perceived as not normal then their use is disguised or negated. The perceptions of the young people indicate that psychosocial supports focused on promoting their identity as HOH young people and normalizing the use of hearing aids should be a key feature of interventions.
 |
Introduction |
|---|
 TOP Introduction The StudyConclusionAppendix A: Sample...Appendix B: Suggestions of...References |
|---|
Current thinking in the area of disability studies endorses the shift from a pathological model to a broader conceptualization of disability as a social construction involving psychosocial processes. It is not uncommon for the perceptions of deafness among young people to be maladaptive (Blood, 1997
; Warick, 1994). A recent study (Israelite, Ower, & Goldstein, 2002) extends the investigation of the perspective of deaf youth by considering the school experiences and identity development of partially mainstreamed deaf young people. A study of mainstreamed hard-of-hearing (HOH) New Zealand adolescents (Kent, 2003) indicates that identity issues may significantly influence the behaviors of some of these young people. A hearing aid may be perceived as a stigmatizing element that is not compatible with their perceptions of what is desirable and is therefore rejected (Blood, 1997).
Arnold and MacKenzie (1998) suggest that there are three possible reasons why people reject the use of a hearing aid: (a) the cost, (b) technical difficulties, and (c) psychosocial factors. In the New Zealand context where hearing aids for school-aged young people are funded by the government, the cost factor does not apply. Students may choose not to wear hearing aids because they perceive them to be of little benefit. However, the body of literature strongly supports the view that likely psychosocial factors are featured in the decision of young people to wear or not to wear hearing aids. Stigmatization of HOH people wearing hearing aids has been explicated by Hetu (1996), who maintains that addressing self-stigmatization is essentially a problem "of restoring the social identity of those with hearing impairment" (p. 19). It is likely therefore that the development and maintenance of an acceptable sense of identity is implicated in the decision of young people to wear or not to wear a hearing aid. Arnold and MacKenzie note that it is very desirable to develop sufficient understanding "to predict from the configuration of a particular [student's] attitudes whether that [student] will use or reject a hearing aid" (p. 196). In the situation where the use of hearing technology is functionally preferable but is not a "forced choice," young people may base their decisions on socially derived and subjective aspects of their experience. To explore this proposition it is necessary to understand the perceptions of those involved.
|
The Study |
|---|
|
TOPIntroductionThe StudyConclusionAppendix A: Sample...Appendix B: Suggestions of...References |
|---|
The Participants
Interview data were gathered from 16 adolescents. All the participants used English as their first language (receptively and expressively) and received their education in a regular school. Although the participants all received some degree of specialist support (itinerant Teachers of the Deaf and Advisers on Deaf Children [AODC]), the school peer group for the participants consisted of hearing adolescents. The 16 participants were aged 12–17 years (mean age of 14.5 years), eight were female and eight male. Thirteen of the participants describe themselves as having New Zealand European ethnicity (Caucasian), two as Maori (the indigenous people of New Zealand), and one as part New Zealand European and part Maori. Eight of the students have a bilateral moderate hearing impairment, and eight have a severe bilateral hearing impairment. All the students have been fitted with hearing aids, and 14 of them are described as regular hearing aid wearers, whereas two wear their aids sporadically. Four of the young people received their first hearing aids within the first year of their life, six as preschoolers, four within the first year at school, one at the age of 13 years, and one could not remember when she received her first hearing aid. Certainly, 14 of the young people had used hearing aids for several years, whereas the person who received hearing aids at the age of 13 years had worn them for 4 years.
Although the participants sometimes refer to "deaf" or "hearing impaired" in the New Zealand context, this commonly is synonymous with HOH. It needs to be noted that none of the participants explicitly identified themselves as Deaf.
A table of relevant individual characteristics is provided in Appendix A.
The Context
The study was conducted in New Zealand and influenced by the educational systems that exist for HOH young people in that country. The overwhelming majority (around 85%) of Deaf and HOH young people of school age in New Zealand receive their education in regular schools (Culling, 2002). A variety of support mechanisms are available according to need, including provision of appropriate technology, specialist teacher allocation, and paraprofessional support. One feature that characterizes the New Zealand education provision for Deaf and HOH young people in regular schools is the involvement of AODC. These professionals are trained and experienced Teachers of the Deaf who have undergone additional study to equip them to provide substantive support and advice for parents, family, and teachers involved with young Deaf or HOH children. AODC typically establish important relationships with the family and the child throughout the school years. Because the quality of the data gathered in the methodology used in this study depends on the quality of the relationship the researcher has established with the participants (Measor, 1985), it was important that AODC were involved in this study.
New Zealand schools typically are populated by young people from the surrounding communities and therefore represent the ethnic characteristics of that community. The students in this study broadly represent the sociocultural ethnic qualities of the respective communities.
It is not uncommon for phenomenological researchers to utilize observation, participation, and reflection to understand the data that are gathered; therefore, it is appropriate to note the connection the researchers have to the field. Both are trained Teachers of the Deaf and psychologists. One researcher worked as an AODC for 3 years, and at the time of writing, the other manages a cochlear implant habilitation program. One of the researchers is audiologically deaf. The study topic and the researchers' reflections on the data are influenced by these experiences.
The Research Issue
The central question guiding this study was "what are the reflections on hearing aid use of adolescents who can derive audiological benefits from wearing them?" To address this question, phenomenological methods were used to understand the experiences of HOH young people in mainstream schools. The purpose of the study was to explore a lived experience and the associated perceptions: the ways these young people have of "being-in-the-world." With this objective in mind, it needs to be understood that the study was not designed to address questions related to the quantification of particular characteristics that may or may not be representative of the HOH adolescent population. However, increased awareness of the reported perceptions of the participants offers considerable heuristic and clinical value.
The Methodology
The methodology used emphasizes the primacy of ontology and the dialectical nature of interpretation/reinterpretation. By these means it was intended to achieve "the revelation of shared meanings; the illustration of uniqueness and diversity; the provision of multiple interpretations of the phenomenon; the unveiling of practices; the seeing of new ways of Being; ... portraying ‘the voices of the informants in their daily struggles and in their struggles over time’" (Annells, 1996, p. 709). The categorization of the shared meanings among the participants emerged from the interview data and were not predetermined or quantified variables.
The study was based on unstructured interviews with HOH students in regular schools who were selected from the case lists of nine AODC who agreed to participate in the study. The criteria for selecting students required that (a) they were enrolled in a regular school and received their education in regular settings only, (b) they were diagnosed with a moderate-to-severe hearing loss, (c) they were fitted with hearing aids, (d) they were secondary school students aged between 12 and 18 years, and (e) the students, their parents, and the school they attended were all informed about the study and consented to the student participating. These students and their parents were provided with information about the purpose and procedure of the interview and were invited to participate. Participation was voluntary and unrelated to any support entitlement. All the students invited to participate agreed to do so. Some data on the personal characteristics of the participants were required (gender, age, age at fitting, ethnicity, degree of hearing loss, type of hearing aids fitted, and whether the person was a regular hearing aid wearer or not).
The interviews were conducted and taped by the AODC in the young person's school because it was considered that the AODC's established relationship with the young person was most likely to optimize free expression of the views the young person held. The AODC (who were all hearing adults) were provided with information outlining the rationale for the study, protocols for selecting participants, attaining informed consent, and ensuring the well-being of the young people, and suggestions of areas that might be considered in the interview. One interview request was specified, namely, "Tell me what it is like to be HOH and need to wear a hearing aid." It was suggested that the interviewer may find it useful to invite description of perceptions held by the young people with additional questions pertinent to the context of the interview (examples are provided in Appendix B). The interviews were transcribed by the researchers and coded using NVivo qualitative analysis software. In some instances the recorded interviews were replayed with the interviewer to confirm the accuracy of the transcription. The names of the young people have been changed to safeguard confidentiality.
The initial analysis involved the researchers coding all the data and identifying categories that were consistently featured in the narratives provided by the participants. The emerging categories were refined through a process of ongoing review of the participants' narratives, consideration of the literature, discussion, and reflection.
The second phase of the analysis occurred when the researchers reviewed the analysis with an expert advisory group constituted by colleagues experienced in working with HOH young people (AODC, audiologists, cochlear implant habilitationists who were experienced AODC). The advisory group agreed on categorizations that most effectively appeared to capture the commonality of the described experience shared by the young people. Comparison and discussion of the categories obtained from the transcripts confirmed and refined the material. The reflections on the categories applied were considered further in relation to the literature. The voice of the informants as they reflected on what it is like to wear hearing aids is captured in five dominant categories (normality, visibility, pragmatics, identity, and social support) that illustrate the frequency of the participants' views as well as the inherent diversity. The analysis revolves around a core category of "normality." It needs to be noted that the concept of normality refers to the young peoples' own perception of their individual context in comparison with their hearing peers in regular school settings.
Terminology
The transcribed voices of the participants represent the terminology used by the young people themselves. The term "deaf" was often used to refer to a person who would more correctly be described as HOH. References to individuals who are culturally Deaf are shown with a capital D.
Normality
Those young people who clearly indicate high levels of personal adjustment and willingness to use of assistive hearing devices also demonstrate a strong sense of "being normal." This is evident with Tina who lives in a Deaf family:
Interviewer. So have you always accepted your deafness as part of you?Similarly, Julie talks of feeling "normal" with supportive friends:Yeah, pretty much, because my family are Deaf. If my parents were hearing I probably wouldn't be able to cope with it as well.
Yeah. Do you know many Deaf people?
Yes, I know a lot.
They [her friends] just accept me as me. They don't really mind if I'm wearing hearing aids or not. So they do know for instance if I go out with friends and it's Guy Fawkes [a public celebration involving fireworks] or something and they all are saying "Is it hurting your ears?" and stuff.Conversely, those young people who struggle to participate and who are reluctant users of the technology tend to see themselves as "not normal." David is very explicit about this when he comments:Yes, they help me when it's needed when it's not needed they just be with me for who I am.
Treat you normally?
Yeah.
If I meet someone new they wouldn't think I could be normal with them, 'cos they'd treat me like a deaf person, like, they wouldn't know me because I wouldn't be able to speak, couldn't speak properly.In David's view, the hearing aids mark him as not normal.
How do you feel about wearing hearing aids?This wish was also vividly expressed by Josh who, even though he enjoys very good social relationships and is academically successful, could state:Annoying. Like, just, like, want to be normal.
If I go to school, I want to be able to go into a room and sit down, and just be like everybody else, even though I have a hearing loss. Just be like, talk to everybody and nobody's going to look at me and go "You know, is he, like, retarded or something?"Mere indicated a similar desire when she said to the interviewer (a hearing person)
I want to be like you with no hearing aids.
Although it is commonly assumed that an early age of identification and fitting of hearing aids promotes adjustment, the evidence in this study suggests that this is not always the case. In this study, one of the strongest expressions of "being normal" and adjusted to wearing hearing aids came from Kim, a 13-year-old person fitted with hearing aids at the age of 11 years, when she said:
It's actually really cool wearing hearing aids because it makes you, you, and it makes you special [as in valued] in that way, and you shouldn't feel self conscious about it because people are going to realise that they're not so bad anyway, and they're just like, "They're actually pretty cool," and they won't judge you much.By contrast, the strongest expressions of not "being normal" were repeatedly provided by David who was fitted at the age of 3 years. Moreover, a considerable portion of the young people displayed varying degrees of being normal. Not uncommonly, acceptance of being HOH and un-self-conscious use of hearing aids was situationally defined, even among those fitted before the age of 5 years. With empathic peers some young people considered themselves "normal" yet the same individuals could also engage in the nondisclosure of their deafness in other contexts. This was well illustrated by Leonie in the following interaction:
Life is normal anyway. I don't know life any different. Get along like everyone else does. If I can't hear something I just tell them—they speak up. If I can't hear the teacher I tell them too.Similarly, Greg also is a regular hearing aid wearer but demonstrates some ambivalence:How do you feel about that?
It's alright. I've never had any problems anyway.
It's really good you feel confident to do that.
Yeah. Most people don't know so it's never a problem.
Most people don't know ...?
That I have hearing aids. They can't see them.
Most of the time no-one notices I'm wearing them [hearing aids].How come they don't notice you're wearing them?
Because I've got long hair.
Yeah, and what else?
And they fit inside my ear.
OK, so what makes it easy to wear your hearing aid?
No-one can see them and they fit right inside your ear and they don't get sore on the outside.
Do you like these better than your other ones [Behind The Ear]?
Yeah, these ones are better 'cos no-one can notice them.
The tendency to selective disclosure of hearing aid use is consistent with the view that a person participates in and therefore "coconstitutes" their reality in a cultural, historical, and social context. More specifically in relation to young HOH people, this confirms the assertion of Ahmad, Atkins, and Jones (2002) that these young people may have multiple and hybrid identities that become evident in different interactional contexts. Some contexts are more likely to highlight, support the use of, and support the disclosure of hearing aids than others. When asked why she had felt self-conscious in the past, Kim replied:
'cos you know, you think people might laugh at you or something.David reported sometimes feeling uncomfortable wearing a hearing aid because
I don't fit in sometimes and people think I'm someone else, like Deaf and can't speak, but, like, I'm not.As Matui said,
I normally forget I'm deaf. Sometimes, not very often, but until someone comes up with it, then I remember.
"Normality" represents the current understanding of how the world works that an individual has extracted from a range of incoming stimuli as processed through his/her existing knowledge (Bell & Cowie, 2001). For some of the young people in this study, there was an indication that although hearing aids were an accepted part of their self-identity, the introduction of the related technology of a Frequency Modulation (FM) system did not fit well with their perception of what is "normal." For example, an interviewer discussed this issue with Mark:
But your FM is that part of you.The narrative of selfhood captures the interpretation of what is (Barresi, 1999HMMM [laughs].
No? Why don't you want your FM?
My FM a little bit.
How come only a little bit? What's the problem with your FM?
Too big, you know, and not comfortable.
It's not comfortable? Really?
Hmmm.
But it's only a little bit on the bottom.
But it might ... looks funny.
Do you think it makes you look different?
Hmmm.
But you don't think your hearing aids make you look different?
They're good.
The hearing aids are OK but ....
Don't like FM.
; McAdams, 1990). The development of self-identity as a Deaf or HOH person may be a process that represents how the individual reflects on his/her interaction history and provides a situationally responsive frame of interpretation (Ohna, 2004). Deafness therefore becomes one dimension in the interactions with others and to achieve a sense of being "deaf in my own way" involves the person's engagement in an existential situation that is likely to be characterized by latent instability as complex and competing social demands must be accommodated. Although Ohna (2004) considers that this process may be subject to the acquisition of life experience over time, features of his conceptualization may be consistent with the voiced perceptions of the adolescents in this study. Their individual self-history may well reflect their dynamic reconciliation of life experiences, including attitudes highlighted by their interaction history with deafness as one dimension. For some, the interactions can be accommodated:Oh, if I meet them for the first time ... most people don't really ask about them—just see them and say "Oh yeah, she's deaf," you know.But for others, the interactions present challenges to acceptable ways of being. Some of the interactions may be negative as apparent in this narrative:
My friends, they will play with me [names friends] and they're on the bus, so when people are getting smart they say "Don't get smart to her," and they give her a hiding. My friend gives her a hiding because I'm deaf: "Be quiet, don't get smart to Mere—you're sad man." I'm almost crying and the girls say "Tell Mere that I'm just going to drop her hearing aids," and I was crying. Everybody says "Mere's crying. Do you know why Mere's crying? Because they call her deaf." And I went in the toilet and somebody help me, and I was really, really embarrassing.
Approaching the individual perceptions of using hearing aids as a narrative pedagogical activity grounded in the experience of a minority grouping invites comparison with the educational experience of minority cultural groups. Using the context of the indigenous Maori in Aotearoa/New Zealand, Bishop (2003) provides a model of pedagogy in which the young people's sense-making processes (cultures) are validated and contribute to the coconstruction of "accepted" knowledge. In this model, narrative pedagogy is "an approach in which young people are able to recollect, reflect and make sense of their experiences from within their own cultural context and preferably in their own language. In such ways their interpretations and analyses become ‘normal’ and ‘accepted’" (Bishop, 2003, p. 232). The young people involved in such a learning environment will have something done "with" them rather than "to" them. In a similar manner, the perception of using a hearing aid as being normal requires that the individual scripts or rescripts his/her narrative to reflect the issues that have significance within the experience of the person concerned. Willing acceptance and use of a hearing aid depends on how readily it fits the script of the prevailing context. Early fitting, instruction regarding the benefits, directives to use, application of reward systems, and suggestions that it is "just part of you," may have limited utility unless the young person's script (at a given point in their interaction history) is compatible with the acceptability or "normalness" of wearing the hearing aid. Negative or inconsistent attitudes toward hearing aid use invite similar rescripting strategies as cultural minorities (see Bishop, 2003) through recognizing and validating the reality that exists for the individual involved.
The age at identification and fitting with hearing aids may contribute to subsequent adjustment, but self-perceived normality appears to be both necessary and sufficient. In this study, it is evident that young people who commonly expressed a sense of feeling "normal" in their interaction history were those who would also be described as "good" hearing aid users. There was a tendency for those who indicated a heightened awareness of not being normal to wear but hide their hearing aids, to use them intermittently, or to use inside the ear hearing aids. Self-stigmatization or socially induced perceptions of "abnormality" are one response to the visibility of hearing aids.
Visibility
For some young people, hearing aids set them apart from their peers. One young male was unequivocal about this:
At school what makes you different from your friends or what makes you the same?The young people in this study often commented on attracting attention when hearing aids were fitted or noticed by others. When asked of his earliest memory of wearing hearing aids Matui replied:Different.
You're different. How? Do you feel different or look different?
I look different.
When I was in, I think it was year 2.... When I first got into the class, everyone goes "What's that thing in your ear? What's that thing in your ear?" And they kept on going on for about a week. Then they finally gave up because they knew.Several other young people similarly commented on being questioned about what the hearing aids were.
For some young people the visibility and consequent questions were opportunities for constructive social engagement. For example, when on a student exchange trip to Australia, Julie recollected:
Half the people at the school in Australia .... I must have worn my hair long and they all didn't know I was wearing hearing aids. And after a while I must have put my hair up and they said "You're deaf", and I'm like "You didn't know?" They were interested and I didn't mind telling them because of the way they asked me. When people ask me rudely I don't answer.Sometimes the questioning appears to contribute positively to the individual's construction of identity:
I feel when people ask me questions and stuff it actually helps me quite a lot to understand about me myself, about my hearing aids, you know?Even among those adolescents who were reportedly "good" hearing aid users being visible invites attention:
You've got to be ready to, you know, answer the questions and stuff.One person noted that she had been self-conscious when people noticed her hearing aids:
Because you have things in your ears, like, "why have you got them in your ears?"Another suggested that his peers could help him
... by not noticing them and asking me questions about them.
A risk concomitant with visibility can be teasing. Greg indicated this in his immediate response to the key request of the study:
Tell me what it is like to be HOH and need to wear a hearing aid.Another young person replied to a question about if his friends and other children had helped him with his hearing aids by commenting:Some people tease you and all that, some people don't mind it.
No, not really. On and off [long pause] umm, sometimes they made fun of them.
As indicated above, it is not uncommon for hearing aid users, even those who seem to have readily accepted them as part of their identity, to sometimes reduce the visibility of the hearing aids. This is commonly done through not wearing hearing aids, having long hair, having hearing aids that match skin color, and using transparent ear molds. There can be an inherent ambiguity in adopting these strategies. Leonie is a confident user of hearing aids, but she also deliberately wears long hair to cover them. She has "sparkly" ear molds, but these are not visible unless she has her hair up and the lighting is conducive to showing the molds. The un-self-conscious presentation of hearing aids is conditional on the interaction context. As Leonie says:
They only see it when the sun shines in my ears.
Pragmatics
The young people who felt psychologically comfortable with wearing hearing aids provided appreciative comments about them such as:
They help me.There can be some pragmatic social benefits too. Andrew appreciated being invited to social events organized for HOH young people and therefore viewed his hearing aids as beneficial:I suppose I can hear people a bit more.
Oh they're cool because I get to go on trips.
The assistive hearing devices do tend to distinguish those who use them from their peers. One common complaint about using FM systems was the way in which they require additional effort. In response to a question of why she did not like FM Tina said:
Because it's a hassle and I have to take it to every single teacher and then take it back and it's just annoying. And I don't want to have to rely on a microphone all the time—I want to be independent.By contrast she was comfortable with her hearing aids
'Cos they help me to hear just everything and I don't really notice them. I don't really notice that they're there most of the time.
Removing hearing aids was identified as a strategy for dealing with teasing (makes the young person appear more normal). One individual commented on wearing BTE aids:
I hardly wore them because people teased me.A young female discussed being teased and the ongoing impact on her school experience.
When I was little I was wearing my hearing aid and this girl was picking on me 'cos I was wearing my hearing aids. I said don't pick on me.I take my hearing aids and put them in my pocket when I just grow up. Last year when I went to [name of school] and, umm, I was wearing my hearing aids and nobody don't like me, because don't have to play nothing with.
Zheng, Caissie, and Comeau (2003) report that teachers and peers of deaf or HOH adolescents underestimate the communication difficulties they experience, particularly in background noise. This lack of awareness of the impact of background noise on communication may mean that conversational exchanges are not always facilitated. Two students identified their frustrations when communicating with peers.
How would you describe what it is like to be HOH?Some students have developed strategies to enhance communication.Just say to them that it's a frustrating time. People don't make allowances for it but other than that it's fine.
When do you find it frustrating?
Noisy; when it's noisy. Yeah, people don't [bother] ... not their fault ... it just happens. They don't talk loud enough and it's too noisy.
Um, they'll repeat things if someone's talking to me and I don't hear they'll tell me what they said. So if I don't hear them they'll tell me what to say and I'll just say it.
What about times when you haven't heard something, or they've said something too quickly, do they ever help you in ways to hear what's gone on?
Like, some people in the class, they'll talk to me and I won't hear them, and I'll try to figure out what they said, like try to make it up, but that doesn't work—I hear it wrong. They just say—"don't worry," and it feels like "Oh man."
How do you feel when they say don't worry it doesn't matter?
Annoyed, because I do want to know—'cos just you don't want to miss out on what people say.
Get along like everyone else does. If I can't hear something I just tell them—they speak up. If I can't hear the teacher I tell them too.Describe what your world is like.
Quite hard, like always having, not always but sometimes, having to ask what they said, like, yeah, usually saying pardon and all that to people.
Oh great. That's brilliant. What about in class? If the teacher is talking to the whole class then he uses this transmitter. But what about the other kids? What if you're having a discussion? How do you get on there?
We pass the microphone around.
How does the school help you with your hearing aids?
During assembly when we're going to have assembly we make sure whoever is going to speak wears the microphone.
If people talked I'd like try and pick out what they're saying by lip reading and that, but I'm very bad at that.
What are the particular characteristics of a person who wears a hearing aid?
They're very cautious about what's going on around them, especially noises and sometimes I even hear noise that didn't even appear. Yeah, you're very cautious of noises and you're always watching when someone's talking to you. And some people really don't like it sometimes.
The use of assistive hearing devices is clearly influenced by personal perceptions. In addition to the desire to be independent (as Tina comments), to be normal or to ameliorate the extent of the visibility there may also be subjective (often erroneous) views of personal capabilities. In response to the statement that she had previously been a "good wearer of her FM," Julie replied:
Yeah, I used to wear it all the time at intermediate school, but at high school it's different. I guess 'cos I'm getting better.The evidence from the AODC was that she was not getting better but may have become more adept at using hearing strategies. Not infrequently, there were self-assessments of communication capabilities (rather than self-assessment of the extent of the hearing difficulty) that seem overly optimistic such as the following comments in relation to lip reading and body language:It's not getting better (the young person's hearing). You are used to using strategies better.
Yeah, I know the point when I need to listen harder than other times.
I lip read quite a lot.The optimistic self-evaluations of the participants' ability to function in much the same manner as their mainstream peers by applying some coping strategies may confirm the inclination toward presenting one's self or being perceived by others as normal. It is certainly clear from the interviews that many of the participants identify themselves as generally aligned with their mainstream hearing peers. They have very clear concepts of who is deaf and tend to define themselves as being different from Deaf.People get quite surprised about how much I can tell what they're saying.
I could read the body action in the testing.
Identity
One of the main challenges facing young people as they transition from childhood to adulthood is the formation of a secure sense of personal identity (Muuss & Porton, 1998). Identity can be difficult to define, not least because it can underscore the difference between social science views of identity as a complex and dynamic phenomena of human experience and the views of disability studies that tend to regard identity as stable and representing a shared experience (Shakespeare, 1996; Watson, 2002). For HOH adolescents, deafness may introduce an additional dimension to the task of establishing their sense of self-reflecting both the individual dynamics and elements of a collective shared identity. It is notable that several of the young people in this study provided similar and very clear explanations of how they (as HOH people) were distinctive from commonly held stereotypes of what it means to be a deaf person. The ability to speak was often emphasized as a primary determinant of identity:
Do you think there is any stereotype about people who wear hearing aids?This perceived distinction of Deaf and HOH people is supported by the comments of another young male:They call them deaf—not really hearing impaired or hard of hearing—just deaf. There is a difference.
Can you explain the difference?
I think HOH people like me—who can talk and don't have to use sign language. But a Deaf person can't hear as well and they have to use sign language and can't really talk.
What do you think creates the difference between the two groups?
Their way of life I suppose. The way they're able to talk and communicate—sign language and just talking normally.
So you think its some kind of communication they choose that makes them decide to be one of those two groups. Do you think it might have something to do with hearing loss?
It could do I suppose, if you know.
So how do you see that?
People who, like, do sign language and they don't talk—they go to a special school and they're not around so called normal people—they don't know.
OK, but the HOH group?
We go to a normal school and people know what it's like to be around us.
What happens if people saw your hearing aids, assumed you couldn't speak and they just started signing to you? What would you do?I would just go up to them, like, I don't know. I guess I'd do: "Hi, I don't do sign language and I'm not Deaf." Someone did that to me in a shopping centre when I was a little Greg and my Nana was right next to me, and the shopping counter lady was doing sign language and I just stand there. We walked out of the store. My Nana, she's like, she just did sign language to you. Oh, OK.
Are they different from you?
They can't talk.
Because they are likely to be visible, hearing aids can affect the image the young people hold of themselves. The mark of difference may be interpreted by hearing peers as representing an identity that is in fact not representative of the HOH young person as indicated in the following comment:
What makes you uncomfortable wearing a hearing aid?One young person described his perception of the "stereotypical HOH person" and a contrary example in the following dialogue:I don't fit in sometimes and people think I'm someone else, like deaf and can't speak, but, like, I'm not.
Umm, well, I suppose you'd say the stereotypical hearing aid wearer is someone who can't speak very well, who's slightly uncoordinated maybe. Like that sort of person, but I've seen people who wear hearing aids when you wouldn't actually notice it. You know, like the way they are. I remember once, when I was in [names a city], we were at this cafe, and there was a waiter there who had hearing aids and to look at him you wouldn't ever know.Why didn't you know?
It's just like, he was like a normal person, and you look at him and say, here's this really nice, normal person who's waiting on people, and then it's like, "Whoa, he's got hearing aids." I remember, like when I was at a science quiz earlier on this year, there was another guy from another college ... and he had hearing aids as well, and I saw him, and it's like, yeah, he's the very stereotypical hearing aid wearer, you know, you got the whole look ....
What's the look? Slightly uncoordinated?
A person who looks like retarded, but probably isn't, and slightly deformed facial features, and stuff like that. And you sort of look at him, "Oh yeah, he looks like he's got hearing aids," and he has too. Whereas other people, it's like, "They've got hearing aids? Wow."
As demonstrated by Blood (1997), hearing aids are likely to elicit stereotypical assumptions of the characteristics or identity of the wearer. The young people in this study repeatedly distinguished themselves from stereotypes they assumed they might be perceived as representing. Indeed, their reaction to what they perceived would-be others' assumptions also reveals their own understandings of what "deaf" is. Kiff and Bond (1996) underscore the diversity of HOH young people when they state that "one of the problems for people who are deaf is that they are in a minority group in society, but probably ... have the most heterogeneous needs and range of abilities [which] many writers, parents, professionals and even the deaf themselves, fail to appreciate" (p. 23). Similarly, Valentine (2001) argues that young people are often provided with an identity that reflects ecological circumstances and is not of their own making. Personal identity may reflect multiple influences, but "structural constraints limit the range of identity claims one can make [and] remind us of the importance of power, ideology, politics, structure and history in legitimating people's sense of identity" (Atkin, Ahmad, & Jones, 2002, p. 22). Although some of the participants can readily define themselves by what they are not, establishing a positive sense of identity is more difficult. This may well reflect embedded ideological and political structural limitations that inadequately encompass the perceptions and experience of HOH people.
The experience of the young people in this study tends to support the view that there are multiple determinants of the behaviors and identity of adolescents (e.g., Cote & Schwartz, 2002; Kiesner & Kerr, 2004; Seginer & Lilach, 2004; Umana-Taylor, 2004). Ahmad et al. (2002) also confirm that the identities of HOH young people are not fixed but are responsive to varying contexts. Similarly, Ohna (2004) critiques the four-stage model of deaf identities suggested by Glickman (1996) and addresses the ambivalence and dilemma that can emerge through variations in contextual conditions. The assumption of identity characteristics that accompany use of hearing aids may not match the current perceptions of the people involved. In certain situations these assumptions may stigmatize the wearer or prompt the wearer to self-stigmatize (Hetu, 1996). At the same time, HOH people who are prone to be caught between deaf and hearing worlds have a "need for connections with some segment of the deaf community" (Leigh, 1999, p. 243). The evolution of the self-narrative that molds the individual sense of identity occurs in interactions with significant others "because the pattern of social or reference group identity that one adapts is likely to depend partly on the extent to which relationships with various social groups have been rewarding or discouraging" (Stinson & Whitmire, 2000, p. 70). This resonates with Bruner's (1990) understanding of how a sense of meaning is created. He posits that a sense of self is determined by the individual's reflexive review of his/her culture and past encounters as well as when he/she can envision alternatives.
Social Support
A common feature among those young people who were comfortable with wearing hearing aids was the presence of a valued social support network. Some participants commented on the influence of parental attitudes, which normalized the hearing difficulties, and the use of hearing aids. One young female noted:
Yeah, they've supported me, like with, ‘cos I was real self conscious and scared, but Mum just like, "Oh Kim, you know that makes you. Hearing aids make you who you are, and you don't need to feel like that 'cos that's just who you are."Several young people referred to specific supportive behaviors used by family members, such as gaining the young person's attention, facing them to speak, assisting with managing the technology, or clarifying schoolwork as mentioned by Julie:
They've definitely helped me with my schoolwork, especially when half the teachers they still don't stop and think that I do have a hearing loss. They just think I can do everything when sometimes they go a bit fast for me. I have to go home and ask my parents.This confirms the view of Leigh and Stinson (1991)
that family involvement is one of the significant factors in personal development and identity formation (see also, Bat Chava, 1993; Leigh, 1999). Although there are a multitude of dynamic elements that may influence an individual's identity and limited options of structures compatible with that sense of identification, the family is an important framework for defining, refining, and validating historical, social, and personal factors that nurture identity development (Jenks, 1996). However, adolescence typically involves individuation or a transfer of emotional attachment from parents to peers (Hay & Ashworth, 2003) and this is evident from the importance the HOH young people in this study placed on their friendships.
The comments of Julie that were noted above illustrate the benefits of peers whose behaviors are consistent with the process of destigmatization explicated by Hetu (1996). In that model, the hearing peers acknowledged the explicit limitation of the hearing difficulty, took it for granted, and accommodated it depending on a given situation (in Julie's example, the firework display). Another example of destigmatizing is provided by the following account of one young female's friend displaying a sense of partnership.
They (friends) haven't seen you grow up and go to Audiology and get your hearing aids checked....Friendship has been identified as crucial to the happiness of HOH adolescents in their school experience (Ridsdale & Thompson, 2002Some of them have.
They come with you?
Yeah, when I went the other day the tube was broken ... and my friend came up with me, and she was looking around and saying "what's this?" "What's this?"
How did you feel about that?
I didn't mind.
Do you feel that's a good thing to happen?
Yeah ‘cos then she's learned something.
). The literature reviewed by Ita and Friedman (2001) provides support for the view that "children who are deaf or HOH who are in general education programs apparently have real concerns about their peer relationships" (p. 179). There is evidence to suggest that friendship can be a determinant in cultural and religious identification for some HOH young people (Ahmad et al., 2002): positive and accepting relationships may override other sources of self-identity. Jarvis (2003) concludes that for efforts to enhance the inclusion of deaf young people in mainstream settings attention should be given to the development of peer support. The importance of peer engagement is supported by the work of Kef and Dekovic (2004) involving adolescents with visual impairments. Their study compared the importance of social support for well-being among 178 adolescents with and 338 without visual impairments. The results indicated that for the visually impaired adolescents (unlike the sighted young people) peer support was significantly predictive of well-being. The conclusion drawn was that this reflected the desire of the adolescents with visual impairments to be independent and as normal as possible. Similarly, a study by Mpofu (2003) of the effectiveness of a school-based program (involving 8,342 participants) aimed at enhancing the social acceptance of adolescents with physical disabilities demonstrated that peer interaction was the most effective means of raising the social status of the students with physical disabilities.
In the current study, the young people who indicated experiencing affirming or accepting attitudes in their relationships with family and friends were those who were most comfortable with wearing hearing aids. The "taken for granted" limitations and the accommodation of diversity among significant others appears to have supported a self-perception of normality. As Watson (2002) explains, this process creates a biography that incorporates "their impairment into their sense of identity in such a way as to normalise the impairment" (p. 517) and the impairment is not an identifier. The inherent diversity of the social relationships of HOH young people and the effect of it on identity development is supported by Atkin et al. (2002), who refute the notion of singular identities or a hierarchy of identifications. Several researchers have strongly urged that those involved in the education of HOH young people need greater understanding and sensitivity to the diversity of their self-perceptions (e.g., Ita & Friedman, 2001; Kiff & Bond, 1996; Ridsdale & Thompson, 2002; Zheng et al., 2003).
|
Conclusion |
|---|
|
TOPIntroductionThe StudyConclusionAppendix A: Sample...Appendix B: Suggestions of...References |
|---|
As stated above, this study seeks to understand the perceptions of the participants and does not provide quantitative evidence of aggregated data. The shared experiences of the participants in this study may contribute to the design of other studies or to comprehending the realities of at least some HOH young people. The conclusions are drawn on exhaustive analysis of the data provided by the participants and reviewed in the light of current literature.
Self-perceptions of normality, or the lack of them, appear to be the principal determinants in the willingness of the young people in the current study to wear hearing aids. These perceptions overrode the age at fitting, the length of time since fitting, or the extent of deafness. Commonly, the use of hearing aids is a visible characteristic that invites comment from peers. For some young people the comments may be interpreted as questioning, which they either respond to constructively or ignore. For others the comments may be taken as unwanted teasing that stigmatizes them. Inherent in stigmatization is a perception of normality and, by implication, the risk of being identified as not normal.
The young people were often very clear in distinguishing a sense of identity as mainstream HOH individuals. Several of the participants distinguished themselves from culturally/linguistically Deaf in terms of communication mode. From their narratives it is evident that identity synthesis is achieved to a large extent by interaction with peers. Participants in this study who had positive relationships with hearing peers who accepted hearing aid use as normal were the individuals who appeared to be confident hearing aid users with a robust sense of identity. Those who expressed difficulties in their relationships with peers were also prone to strong expressions of being other than normal because they wore hearing aids. Comprehending the willingness of HOH adolescents to comfortably use hearing aids therefore requires understanding the idiosyncratic and dynamic influences of the multiple contextual elements that affect the life of the young people. Their willingness to allow "the sun to shine on their ears" involves external factors (not least, hearing peers) as well as promotion of their own sense of agency.
The implication of the voice of the participants is that confident use of hearing aids by HOH adolescents in mainstream education depends on them being able to perceive that behavior as normal. This is most likely to happen if the HOH person is accepted in his/her peer group. The sense of identification with a chosen peer group (whether hearing, Deaf, or HOH) can be the means by which the HOH young person develops a "normalizing" attachment. Therefore, practitioners may need to pay close and careful attention to the social context and relationships of the young people. Nonuse of hearing aids may well be indicative the fact that "the deficiency lies within the context" and that interventions should be applied there rather than to the HOH individual.
This current study attempted to hear the voice of a particular group of young people. The researchers were keen to enhance the likelihood of capturing the views of the participants and considered that the use of familiar, supportive interviewers from outside the school system (the AODC) would help to achieve this objective. A risk of this procedure is the possibility that differing individual interviewing methods affected the data that were collected. Certainly, being immersed in the transcriptions highlighted to the researchers the value of empathic, nondirective interviewing for eliciting robust data, and the richest descriptions were derived from interviewers applying such skills. Equally, the researchers' perceptions, discussions, and conclusions presented another risk of distorting the voice of the young people. The second phase of the analysis (reviewing the data with colleagues) was a necessary procedure in confirming the findings. It would have been useful to have confirmed the analysis with some of the participants, but practical issues and additional complexities in attaining appropriate consent meant that this was not feasible. Within the constraints of the current study it was not possible to evaluate the extent to which the findings might be similar across cultures and this could be a topic for further investigation. Although further studies may examine the generalizability of the core categories that have been identified, this study does provide a small indication of the perceptions of mainstreamed adolescents who wear hearing aids.
|
Appendix A: Sample Characteristics |
|---|
|
TOPIntroductionThe StudyConclusionAppendix A: Sample...Appendix B: Suggestions of...References |
|---|
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
Notes. Age = age at the time of interview; age at fitting = as reported by students at the time of interview; degree of loss = mild (less than 25 dB), moderate (26–65 dB), severe (66–95 dB), and profound (over 95 dB); NZE = New Zealand European; BTE = behind the ear hearing aid; ITE = inside the ear hearing aid.
|
Appendix B: Suggestions of Areas That Could Be Explored in Interviews |
|---|
|
TOPIntroductionThe StudyConclusionAppendix A: Sample...Appendix B: Suggestions of...References |
|---|
Tell me how you first started your education and the educational stages you have gone through.When you look at your classes and the teachers you have had, what qualities did they have that made them good classes/teachers for you?
What is your greatest challenge as a hard-of-hearing student?
How would you describe being hard of hearing to someone who did not fully understand what it means to be hard of hearing?
What are the most severe problems, with both students and teachers that you have had to overcome as a hard-of-hearing student in the school system?
What are the positive things, done by students and teachers that have helped you to become a successful learner and school participant?
Think about when you started school (primary, intermediate, or secondary). If you could have chosen the type of school that would be most helpful for you what kind of support would have been best for you?
How important is being part of the regular school to you? Explain why.
Tell me about your friendships in school.
What steps would you like to see implemented to make going to school easier and more rewarding for all hard-of-hearing students?
What would you like to do when you finish secondary school? What do you need to help you do those things?
|
Acknowledgments |
|---|
No conflicts of interest were reported.
|
References |
|---|
|
TOPIntroductionThe StudyConclusionAppendix A: Sample...Appendix B: Suggestions of...References |
|---|
-
Ahmad W, Atkin K, Jones L. (2002) Being deaf and being other things: Young Asian people negotiating identities. Social Science and Medicine 55:1757–1769.
Annells M. (1996) Hermeneutic phenomenology: Philosophical perspectives and current use in nursing research. Journal of Advanced Nursing 23:705–713.[CrossRef][ISI][Medline]
Arnold P and MacKenzie I. (1998) Rejection of hearing aids: A critical review. Journal of Audiological Medicine 7:3173–199.
Atkin K, Ahmad W, Jones L. (2002) Young South Asian deaf people and their families: Negotiating relationships and identities. Sociology of Health and Illness 24:121–45.[CrossRef]
Barresi J. (1999) On becoming a person. Philosophical Psychology 12:79–98.[CrossRef]
Bat Chava Y. (1993) Antecedents of self-esteem in deaf people: A meta-analytic review. Rehabilitation Psychology 38:221–234.[CrossRef]
Bell B and Cowie B. (2001) Formative assessment and science education (Kluwer Press, Dordrecht, The Netherlands).
Bishop R. (2003) Changing power relations in education: Kaupapa Maori messages for ‘mainstream’ education in Aotearoa/New Zealand. Comparative Education 39:221–238.[CrossRef]
Blood IM. (1997) The hearing aid effect: Challenges for counseling. Journal of Rehabilitation 63:459–63.
Bruner J. (1990) Acts of meaning (Harvard College, Harvard).
Cote J and Schwartz S. (2002) Comparing psychological and sociological approaches to identity: Identity status, identity capital, and the individualization process. Journal of Adolescence 25:571–586.[CrossRef][ISI][Medline]
Culling V. (2002) Issues within health and education for children and young people with sensory impairment: A New Zealand stocktake (Ministries of Education and Health, Wellington).
Glickman N. (1996) The development of culturally deaf identities. In Glickman NS and Harvey MA (Eds.). Culturally affirmative psychotherapy with deaf persons (Lawrence Erlbaum, Mahwah, NJ) pp. 115–153.
Hay I and Ashworth A. (2003) The development of adolescents' emotional stability and general self-concept: The interplay of parents, peers, and gender. International Journal of Disability, Development and Education 50:177–91.[CrossRef]
Hetu R. (1996) The stigma attached to hearing impairment. Scandinavian Audiology 25:Suppl. 43, 12–24.[ISI]
Israelite N, Ower J, Goldstein G. (2002) Hard-of-hearing adolescents and identity construction: Influences of school experiences, peers, and teachers. Journal of Deaf Studies and Deaf Education 7:134–148.
Ita C and Friedman H. (2001) The psychological development of children who are deaf or hard of hearing: A critical review. The Volta Review 101:3165–181.
Jarvis J. (2003) ‘It's more peaceful without any support’: What do deaf pupils think about the support they receive in mainstream schools? . Support for Learning 18:4162–169.[CrossRef]
Jenks C. (1996) Childhood (Routledge, London).
Kef S and Dekovic M. (2004) The role of parental and peer support in adolescents well-being: A comparison of adolescents with and without a visual impairment. Journal of Adolescence 27:453–466.[CrossRef][ISI][Medline]
Kent B. (2003) Identity issues for hard-of-hearing adolescents aged 11, 13, and 15 in mainstream settings. Journal of Deaf Studies and Deaf Education 8:315–324.
Kiesner J and Kerr M. (2004) Families, peers, and contexts as multiple determinants of adolescent problem behaviour. Journal of Adolescence 27:493–495.[CrossRef][ISI][Medline]
Kiff P and Bond D. (1996) The inner life of deaf children. In Varma V (Ed.). The inner life of children with special needs (Whurr Publishers, London) pp. 15–16.
Leigh I. (1999) Inclusive education and personal development. Journal of Deaf Studies and Deaf Education 4:236–245.
Leigh I and Stinson M. (1991) Social environments, self perceptions, and identity of hearing impaired adolescents. The Volta Review 93:77–22.
McAdams DP. (1990) Unity and purpose in human lives: The emergence of identity as a life story. In Rabin AI, Zucker RA, Emmons RA, Frank S (Eds.). Studying persons and lives (Springer Publishing Company, New York) pp. 148–200.
Measor L. (1985) Interviewing: A strategy in qualitative research. In Burgess R (Ed.). Strategies of educational research: Qualitative methods (The Falmer Press, London) pp. 55–77.
Mpofu E. (2003) Enhancing social acceptance of early adolescents with physical disabilities: Effects of role salience, peer interaction, and academic support interventions. International Journal of Disability, Development and Education 50:435–454.[CrossRef]
Muuss R and Porton H. (1998) Theories of adolescence 7th ed. (McGraw-Hill, New York).
Ohna SE. (2004) Deaf in my own way: Identity, learning and narratives. Deafness and Education International 6:120–38.
Ridsdale J and Thompson D. (2002) Perceptions of social adjustment of hearing-impaired pupils in an integrated secondary school unit. Educational Psychology in Practice 18:121–34.[CrossRef]
Seginer R and Lilach E. (2004) How adolescents construct their future: the effect of loneliness on future orientation. Journal of Adolescence 27:625–643.[CrossRef][ISI][Medline]
Shakespeare T. (1996) Disability, identity and difference. In Barnes C and Mercer G (Eds.). Exploring the divide: Illness and disability (The Disability Press, Leeds, United Kingdom) pp. 94–113.
Stinson M and Whitmire K. (2000) Adolescents who are deaf or hard of hearing: A communication perspective on educational placement. Topics in Language Disorders 20:258–72.
Umana-Taylor A. (2004) Ethnic identity and self-esteem: examining the role of social context. Journal of Adolescence 27:139–147.[CrossRef][ISI][Medline]
Valentine G. (2001) Exploring children and young people's narratives of identity. Geoforum 31:257–267.[CrossRef]
Warick R. (1994) A profile of Canadian hard-of-hearing youth. Journal of Speech Language Pathology and Audiology 18:253–259.
Watson N. (2002) Well, I know this is going to sound very strange to you, but I don't see myself as a disabled person: Identity and disability. Disability and Society 17:509–527.[CrossRef]
Zheng Y, Caissie R, Comeau M. (2003) Perception of hearing difficulties by adolescents who are deaf or hard of hearing and their parents, teachers, and peers with normal hearing. The Volta Review 103:3185–202.
CiteULike 
Connotea 
Del.icio.us What's this?
This article has been cited by other articles:
|
|
 |
|
  K. Woodcock and J. D. Pole Health profile of deaf Canadians: Analysis of the Canada Community Health Survey Can Fam Physician, December 1, 2007; 53(12): 2140 - 2141. [Abstract] [Full Text] [PDF]
|
|
| ||||||||||||||||||||||||||||||||